My Post Concussion Syndrome

Non-Sleep Study

2012-01-19T20:46:00.002-05:00

I had a sleep study Monday night (they should call it a no-sleep study). It was so terrible. I felt like I didn't sleep at all, I was dreaming about not sleeping, and I couldn't tell if I was asleep or awake most of the time. At 5:30am when they woke me up to send me home, I felt awful and then they told me there was no apnea during the night.

So, no apnea is good because I don't have to wear a CPAP or any other breathing device while I sleep. I did have my hopes up that this would explain why I wake up feeling so crappy every morning, though. That's out, I guess. I'm still waking up all the time at night and don't feel rested when I wake up in the morning.

My neurologist is submitting a narrative to my insurance to try and get me approved for Botox treatments to prevent migraines. It was recently approved by the FDA for this use and has shown some good success. Because I've tried everything else to prevent migraines, this might actually get approved. I'm still getting 1-2 migraines every week.

I've had a rough month. I've been really down and discouraged for most of it and feeling physically awful. I have moments where I'm encouraged and am finding faith in my down times, but it was bad. This past couple of days have been better. A good friend reminded me of a verse: “Give thanks in all circumstances; for this is God's will for you in Christ Jesus” - 1 Thessalonians 5:18. She reminded me that these “speed bumps” make you slow down and look at why God has you where He does.

Please pray that I will continue to see Christ in my struggle and feel Him with me through every step. I know He's there, I just need to make sure I'm meeting Him. Please pray that I will be able to sleep soundly through the night and feel rested when I wake up in the morning. Please pray about the Botox treatments.

Clarity in the Storm

2011-12-21T21:42:00.000-05:00

It has been 6 weeks since I started taking the L-Methyfolate. I have noticed subtle differences such as increased clarity, focus, and ability to handle stress. It is possible that as I continue on this medication, I will see some more subtle improvements.

I am still struggling in a lot of ways. I still have fatigue, nausea, and headaches every day. I am still unsteady at times and am still getting 1-2 migraines per week. I do not currently have any medication for migraines that works for me without causing side effects that are worth the relief.

I saw my neurologist today who clarified some of the gene mutation questions I have. The MTHFR gene I have is mutated at 1298 (one copy). It causes an inefficiency in how my body process folic acid found in nature into L-Methylfolate (which is the form the body uses). There is a range of inefficiency, from not being able to process it at all to being able to process different percentages. I could increase my folic acid intake by a large amount to correct this, but it is more efficient to take the Deplin (L-Methlyfolate), and skip the step of making my body work harder to process less or none at all.

Due to my consistent struggles with migraine, we are going to try to get my insurance to cover Botox injections for migraine. It is supposed to be effective at preventing migraine. I have tried other preventative medication that has been covered, but it has not helped and given me terrible side effects. Please pray that the narrative the neurologist writes will sway the insurance company to cover the Botox treatments. I'm not sure if it will work, but I'm willing to try.

I will also have a sleep study to check my oxygen levels and decide if a CPAP would help my daily symptoms. The past sleep study I had showed low dips in my oxygen while I slept. I'm not excited about the prospect of using a CPAP, but maybe it will help.

I've been so discouraged lately. I am so weary, and feel like it's been so long. 2 ½ years has crawled by and I feel like I don't remember what it feels like to not be in pain or be limited in so many ways. I've seen God's glory in ways I can't believe, and I know He is holding me through this. I'm grateful for all the lessons I've learned and this journey, but I can't help feeling down.

I know that even when I can't go on anymore, my King in all His power can. Please pray that I will continue to see God's glory through this path I've been set on.

I'm a mutant! MTHFR

2011-10-26T09:48:00.000-04:00

Good news! I have been diagnosed with the MTHFR Gene Mutation. The MTHFR Gene produces an enzyme for proper folate absorption. If a person carries the gene mutation that blocks production of this enzyme it can result in problems with folate brain nutrition. If the brain does not receive adequate folate nutrition, you could suffer problems with motivation, initiative, alertness, concentration, mood, sociability, and other brain functions. It may cause other issues within the body as well.

The medication I'll be taking is called Deplin (it is L-methylfolate) and it works through a natural process in the brain to regulate all three neurotransmitters (brain chemicals called serotonin, norepinephrine, and dopamine) associated with mood by providing the increased dietary requirements for folate. It is NOT folic acid! The gene mutation causes the body to be unable to break down folic acid, so over the counter supplements and multivitamins are actually bad for this issue.

Dr Leddy, the doctor who has been conducting the PCS research at UB says that he thinks that I'm physically rehabilitated from the concussion. If that's the case, this gene mutation treatment might take away the other physical issues I'm having. With some occupational therapy and continuing this medication I might be better! I'm very excited about this! We should see results in 1-2 months! Please pray that this is it. God has been so good and so faithful through this process and this would be a great end to this chapter.

I had been praying Psalm 13 this week while I was struggling with my uncertainty and impatience:

How long, Lord? Will you forget me forever?

How long will you hide your face from me?

How long must I wrestle with my thoughts

and day after day have sorrow in my heart?

How long will my enemy triumph over me?

Look on me and answer, Lord my God.

Give light to my eyes, or I will sleep in death,

and my enemy will say, "I have overcome him,"

and my foes will rejoice when I fall.

But I trust in your unfailing love;

my heart rejoices in your salvation.

I will sing the Lord's praise,

for he has been good to me.

A new hope.... ;-)

2011-10-19T15:52:00.001-04:00

After a 6 week migraine, I called an emergency meeting with my neurologist's PA to discuss options. Every medication I have taken has caused side effects that outweigh the benefits. I can take the edge off the migraine, but it keeps coming back after a few hours or the next day.

She ordered a slew of blood-work to be done and a CPAP sleep study. Amongst my vitamin levels and blood counts, she ordered a test for the MTHFR gene mutation which can cause this reaction to medication I've been having. (http://ghr.nlm.nih.gov/gene/MTHFR) I will find out the results on Monday, Oct. 24.

After some research, I'm really hoping that this test comes back positive. From what I've read, it appears that this gene mutation can cause not only my adverse reaction to meds, but also migraines, fatigue, nausea, and more severe stuff down the road like stroke and heart issues. The solution would be to take a form of folic acid called methylfolate to counteract the effects of the gene mutation. It would be a simple thing to fix so much!

Although I still have more rehabilitation to go through, my physical rehabilitation seems to be complete. Before this 6 week funk I've been in, I could go 30 minutes on the treadmill with a heart rate in the 150s regularly. That was the goal set for me. When I start feeling better, I am going to be able to take the treadmill test again with Dr. Leddy to be sure. This would be a huge win for us!

I'm so hopeful right now that this gene mutation is the answer to how badly I've been feeling and the constant migraines. It would be so awesome to have this be the end to my story and the beginning of feeling well! Please pray that the blood-work is conclusive and clear. Please pray that if the tests come back negative that I don't lose hope and get too disappointed.

The Lord has been faithful and taught us so much during this time and it has all been worth it. Please pray we will continue to give Him the glory and trust His plan. Thank you!

"Poor - Me" Day

2011-10-06T07:27:00.002-04:00

It's been a tough couple of weeks for me. As I am learning to say no to things, I am feeling like I'm being tested thoroughly. I haven't been in a position to say “yes” for the past couple weeks. It's been rough.

I have developed a sensitivity to Triptans and they just aren't working to kick my migraines lately. I have tried Maxalt, Treximet, Imatrex, Frova, and Relpax. They all work to block different receptors in the brain. All of these, except Treximet (which includes Naproxen), only worked with the addition of an anti-inflammatory.

I found myself with a 6 day migraine that wouldn't break. The Frova I took gave me stroke-like symptoms, and I found myself not knowing what to do. My neuro put me on a Prednisone pack and eventually had to order an infusion yesterday. The infusion included a non-steriodal anti-inflammatory (NSAID), Benedryl, and Zofran.

My migraine was taken down from a pain level of 8 to a 4, but the nausea never left me. I went home and slept it off for a couple hours and found that I could get out of bed. I couldn't sleep last night very well and found myself up at 6 this morning.

My neuro is going to give me something else to try for migraines today. I've been so traumatized by different medication's side effects that I'm nervous to try anything new. I feel like lately all medication I take is either ineffective or makes crazy stuff happen to my body. Even vitamins come right back up. I've ordered gummy vitamins to see if I can keep those down more easily.

I'm having a “poor-me” day today and I'm trying to get back to a positive, hopeful place. Please pray that I can have faith and patience as I try out some new medication. I hope we can find something that will work for me.

Defining and Prioritizing

2011-09-29T17:35:00.002-04:00

I was on such a high when I found that I had a quantifiable way to tell people how I was feeling and to help myself make better decisions. I thought I would be able to take the emotion out of decisions with my new-found UNO card system.

In the UNO card system: 1,2,3 are red cards which means I am supposed to choose not to do anything. 4 and 5 are yellow, which means I have to choose based on how badly I want to do something or if I will get something positive from what I do. 6-9 are green, which means I should be able to choose to do things that I want to do. Seems pretty easy and straightforward. It's not! I can barely define what each number represents, let alone follow what I'm supposed to do within those boundaries.

I have learned that you can't take emotion out of these decisions. Prioritizing isn't always nice and is sometimes selfish. I am not used to choosing things that are best for me. I'm trying. A wise woman in my life explained to me that me getting better will make things better for my husband and kids. It's not selfish to make choices for myself, because it will get me back in the game for my family.

Over the past week that I have been trying to make better choices for me, several of my friends “needed” me. I almost got on a plane and flew to my friend who was going through a very difficult time in her life. I haven't flown once since my injury and was about to take a long flight halfway across the country to be there for my friend. I would probably have been no good to her when I got there, either. It didn't occur to me that I could probably do better for my friend from home until this wise woman in my life helped me to see that.

We have to make better choices for ourselves. When I'm in the red, it's so bad that I can't imagine doing anything, but I would get on a plane? When I'm in the yellow, I mostly choose things that are for other people, instead of preserving my precious tiny reserve of energy to hopefully hit the green tomorrow. When I'm in the green, I find myself looking for things to do around the house instead of resting and letting my brain heal.

It's been over 2 years since my head injury. I have these little epiphanies often, but each one of them seems to make things so much more clear. I am going to challenge myself to make better choices and to choose ME for a change. I have a fear in the back of my head all the time, “What if I never get better, and I waste my life resting?” It's a gamble, but I'm going to try gambling on the positive side for a while. Wish me luck!

Communication and UNO cards

2011-09-19T20:30:00.000-04:00

I had a couple of interesting doctor visits this past week. I am officially done with my scheduled Bowen Therapy appointments. This was an alternative treatment to get my body balanced and re-booted to fight my post-concussion syndrome. She said that she has done all she can for me and to only call if I need her.

I saw a psychologist this week who specializes in brain injuries and post-concussion syndrome. She has explained to me that I need to rehabilitate the stress processing part of my brain and she has ways I can do that. I operate at about 75% of what I used to be on my best days. That is my baseline (my 100%). In order for me to begin this rehabilitation, I need to keep my level above 50% consistently.

She has given me ways to monitor my exertion levels and is starting to teach me how to communicate with everyone so that I can keep myself healthy enough to start this rehab. For home, I have a stack of UNO cards that I can put in a card holder showing what level I'm feeling at the moment. 1-3 in red, 4,5 in yellow and 6-9 in green. That way my family knows what I am up for and can know how to approach me. It helps me know what I can and can't do also.

I'm learning what affects me and what things I need to change. I hope I can be more honest with everyone about how I'm feeling and what I need as I learn these things. Please pray for me as I go through yet another new treatment. I have so much hope for this! Now that I'm learning what I really need to get better, I have to stay rested and learn to let others do things for me.

Second Wind

2011-09-05T10:31:00.001-04:00

There are definite ups and downs in this fight against PCS. I waver through stages of “grief”. I am in total acceptance of it some days and looking for ways to live with it, and other days I examine all my symptoms and see what I can do to beat this thing (even if it's unbeatable).

My husband and I celebrated our 10 year anniversary by going out of town to Toronto for 5 days. I couldn't believe how far I could push my limits. Without the stresses of every day life, it was 3-4 hours before my symptoms reared their ugly heads.

When we got back into town, it was a huge wake up call for me. My limitations were set right back to 45 min – 1 hour before my symptoms kicked in. I've woken up with bad headaches with nausea and fatigue almost every day since I've been back. If I could live stress free and only experience physical limitations for 5 days, how can I make changes to my life here to accomplish some sense of “stress-free” every day?

I decided that I might need some help. I did some research and found a counselors group that takes my insurance and made an appointment with a psychologist. I see her next week to see if I can find ways to manage my stress more effectively. Some of you have said to me that this has helped you or that some of your neurologists have suggested that brain damage can include stress processing limitations. I am hoping that talking through things can help me to have less stress in my every day life and longer periods of time to function daily.

I also hired someone to come and clean my house. I can pick up the house pretty well and as a family we stay on top of the dishes and laundry, but my house just doesn't get cleaned, and it makes me crazy! It's one of those things that adds to my stress. I try to clean sometimes and it hurts my body so badly. I was vacuuming last week with a pounding, spinning head, and I paused to vomit when I just started laughing at myself. Why hadn't I been able to decide to get this help for myself?

It's so hard to look at myself and not only accept that I need help for some things, but that I'm worth it enough to be helped. I do our finances and am so tight with the money, trying to pay down debt and get to a place where we can start saving. It's crazy to me to try and spend some of that money on myself. A wise person in my life made me turn the situation around. She said, “If it was your husband, wouldn't you do everything you could, no matter what the cost?” She was right. It helped me to see that he just wants me to be better and the less I do to make that happen the worse he feels.

I hope these changes can give me longer periods of “ok” time where I can function somewhat normally. With school starting tomorrow, I know that will also take a lot of my stress away. What are some other suggestions for stress management and getting help that you guys have found?

Doctors, Doctors, Doctors....

2011-08-08T12:52:00.001-04:00

It's been Doctorpalooza these last couple of months. It's strange going through “breakthroughs” and not knowing if these different treatments are helping or not. It all started when I heard about the Bowen Technique. I'm going for my 6^th treatment today and people keep asking me if it's helping or working. I'm not really sure how to answer that.

The therapist told me that my entire body was a shift out of alignment and spent the first few visits aligning the right side with the left side of my body. She also fixed the tone of my muscles so that the ones that were worn and flat became springy and rounded again. She fixed my neck almost completely and I may never have to go for physical therapy for my herniated discs again! WHOO HOO! She released the muscles from the nerves and we are left with where we are now.

She saw that my jaw was out of alignment, but didn't want to adjust my jaw without my dentist seeing me first. He saw me 3 weeks ago and did a consultation with impressions and is working on a nightguard for me and is going to figure out how to adjust my bite so that my jaw is in a relaxed state rather than always in tension the way it is now.

I have felt really worn out and had lots of headaches through all this adjustment. I feel like getting this stuff squared away will be helpful for me when it's over, but getting through it has been really tough. I see Dr. Leddy (the UB doctor) next week and also my dentist that same day. The following week I go to Dent to see my neurologist. The Lord has put me in good hands with so many providers who understand my condition and are trying to help even after 2 years.

During this tough time when they are all working on me, it feels like it would be easier to just give up fighting this sometimes and give in to the PCS. I'm weary of fighting against it, but I know that it's better to fight it. Please pray for me through this tough time. Please pray for encouragement for me and my family, for endurance for me and all the doctors that are sticking with my desire to fight, and praises to God for all the amazing things He's done through these past 2 years of trials.

I heard a good analogy the other day on the radio, “God is the shepherd and we are the sheep, but there are also sheepdogs (trials) that keep us in line and on the right path. God cannot control the sheep, but can guide them with the use of the sheepdogs to go the right way.” This was so encouraging to me and helps me remember that there are reasons for this stuff.

In the crest of the wave

2011-07-14T10:39:00.002-04:00

I've started and stopped a few posts this week trying to figure out how to say what I want to say. I've been struggling, but have come through the other end with some encouragement. There are times I get caught up in my own private pity party and I can't break out of it for a few days.

People were bothering me with everything they said, “Well, you look good to me”, “I can't believe you are sick, I couldn't even tell”, “I saw a new treatment for migraines in the paper today – just eat a Dove Ice Cream bar when you start to get one”. Really, people? I know they mean well and are just trying to help or encourage. They just don't get it.

I stayed in that pissy, down attitude for a solid 5 days, but I'm heading out of it steadily. My health is improved so much from 2 years ago when this all first happened. I understand my body and what has happened to me. I have a pretty good handle on my limitations. My relationship with the Lord and my family is fantastic. I guess I can call that “living with PCS”.

There were so many things I asked God for before this happened. Maybe, in part, this is some of my way out of those things. I can only speculate what the King of Kings has in store for me. I wanted a way out of the mountain of debt we had put ourselves in. I wanted to be closer to my kids. I wanted my husband to lead our family and be the man of the house. All those things are happening now. I don't like the way that they are happening, but they really are happening.

I'm home with my kids every day. I am not really able to fully enjoy them, but I can watch them live each day and take their reports in small doses. I can see them becoming more and more independent, and know that they understand how I feel and how to have a relationship with someone with a disability. I get to spend every day with them - no matter how crazy they drive me ;-)

My husband has really stepped up. He works full time, is in the Air Force reserves, takes care of the house, and leads us to Christ and in our church. He has become the man of my dreams, a man like David from the bible, a man after God's own heart. He slips up, he's not perfect, but he has risen to this challenge and changed in ways that he might not have if it wasn't for my PCS.

We were approved for disability after 2 years of waiting. The lump sum back payment went immediately on some of our debt. We are well on our way to paying off so much of our debt. We are being faithful in our giving to the Lord, even when we didn't have much to give. He has been faithful to us financially and is returning much higher than any bank ever could.

There are more little things, but I am trying to focus on the good in my life. The other stuff is just stuff. There is a fresh, new body waiting for me with my King when this life is over. I will continue to try every treatment I hear about (except maybe the Dove Ice Cream Bars). I will keep my treadmill treatment up, and keep seeing all my doctors. I am fighting against this, but also trying to find a way to really live through it.

I would love to hear about the good things that you guys have experienced through your PCS. Have you met someone you never would have talked to? Have family members surprised you? Have you found a deeper relationship with yourself, others, or the Lord?

Faith and Healing

2011-07-03T14:04:00.001-04:00

Discussions about faith and God in our lives are always welcome here. This post will serve as a place to continue that type of discussion. Feel free to lovingly speak the truth here.

Our job that Jesus gave us was to love the Lord our God with all our hearts, minds, soul, and strength and also to love others as we love ourselves. Little differences in churches and traditions shouldn't be forces that drive a wedge between us. They can certainly be interesting to discuss.

I believe that I am saved by Christ, and not by my works. He is what gets me through each day and how I live with the pain and struggle that I am in now.

Anniversary

2011-06-07T09:35:00.003-04:00

Yesterday was the 2 year anniversary of my head injury. It's amazing to think that it's been that long since my life has been so severely altered. I don't really remember what it's like to feel good. I don't remember what independence feels like. I thank God every day that it wasn't worse, and I am as high functioning as I am.

My every day symptoms at this point are: low-level headache and nausea, fatigue, unsteadiness, lack of focus, average of 45-minute limit on physical, social, intellectual activity, difficulty with different areas of memory, mood changes, and an average of 1 migraine a week.

The approval for disability last month was a win in so many ways. Not only will we be able to catch up financially, but the declaration helped me feel validated. PCS is an invisible problem and that might be the hardest thing about it. I am told all the time, “Well, you look great!” I know it's meant to be an encouragement, one that I fully appreciate, but it shows that people really can't tell when someone is hurting inside. I am happy in life, though, and I am glad it shows through my pain.

I am still continuing with my treadmill therapy. At my last post, I was jogging at a high heart rate. Now, I have slowed it down a bit and increased my time. My doctor says that the high heart rate can be unhealthy for extended periods. Now I am at a speed of 4.5 for 30 minutes, and my heart rate peaks around 160-170. I see Dr. Leddy once a month, and will be seeing him June 20. The goal is to increase my endurance, and hopefully that will translate into increasing my activity limits daily.

I am still struggling with my herniated discs in my neck. I have been given a home traction unit, but I think it might be making things worse. I try to keep up with my physical therapy home exercises, but it's a nagging pain that is increasing my every-day headaches.

My husband found a therapy called The Bowen Technique (http://www.boweninfo.com/how_it_works.htm), which might help with a lot of my issues. I called the practitioner in our area and will hopefully set up an appointment to try it out. I will always try something new and see if it helps. God works through all things and can use all things for His glory.

I'm so thankful to my family and friends who continue to stick by me and support me in all I do. I am amazed at how people can be supportive even when they can't quite know how I feel or what I'm going through.

Praising in the Storm

2011-05-11T09:54:00.000-04:00

I'll start this update off with some good news. It's been 23 months since my head injury in June 2009. I applied for disability November 2009, and was denied and appealed February 2010. I had my appeal hearing April 2011 and yesterday (May 2011), I was granted Social Security Disability! Praise God! I am so happy to have validation and some breathing room. We should start getting checks within 3-6 weeks.

There have been some other things that are positive too lately. I have been issued a home traction unit for my neck, which I received and started trying yesterday. It really felt good when I used it and helps give me a ton of relief with the tightness in my neck.

I had some heavy fatigue a couple months ago that was not relenting. My primary doctor ordered some blood tests and found that my Vitamin D levels were around 10. She thinks that could attribute to the fatigue, some of the low level headaches, and the nausea. I have had 3 weeks of mega-dose Vitamin D so far and might be seeing a little improvement.

My treadmill therapy is going well. I am jogging!!! I can jog for 20 minutes a day now, with a heart rate around 180 with no aggravated symptoms. I will continue to train my heart-brain connection through this therapy. I see Dr. Leddy next week to check in and see where to go from here.

I have on average 1 migraine a week now, down from 3. It's a relief to have this limited the way it is. The migraine wipes out 1-2 days and feels like such a setback. The every day headache is more mild the last week or so. I have less nausea and a bit more energy. The doctor gave me a steroid pack last week to give me a boost in energy and wipe out any inflammation that was there. I think the pack helped in both of those functions.

I don't know how we would have gotten through all this these past 2 years without such a loving family. I have learned to humble myself and ask for help when I need it. My faith in God carries me through this and all the other challenges in my life. How amazing to have peace in the middle of this great storm! He is so good!

Where two or three gather in my name...

2011-04-07T19:38:00.003-04:00

It's been a rough couple of weeks, there's no getting around that. I do have praises that before the rough spot, I was having some marked progress. I had a lot more energy and was able to sustain about 20-30 minutes of physical, social, and mental activity before I started to see symptoms and had to take a break.

Then, I got a headache 2 weeks ago. It wasn't a migraine, but it did turn into one 5 times in the last 2 weeks. All the other days, it was my every day headache that I've been getting, but it felt so much worse. It carried along with it heavy fatigue and nausea. I cannot take medication for my every day headaches, because of the “rebound effect” they have. Basically, I would have gotten a headache again as soon as the medicine wore off.

Yesterday, the headache started to dull and the fatigue started to lessen. Today is even a little better. I walked on the treadmill slowly the last couple of days to try and get a little physical activity and I think it helps. Please pray that I will continue to see relief and that I don't let setbacks get me down. I was starting to get my hopes up that I was going to be better any day.

I know that God can do all things. I read about those in the time where He walked the earth that touched His cloak and were healed. I know I have the faith that I can be healed, and I feel that I've “touched the cloak”. The Bible is a whole, and there is so much in there that I know it's not that simple. There is more to my journey than a quick fix.

I have read that some suffered for decades, some for their entire lives for God's great glory. I am comforted by the knowledge that when my life is over on this earth, I will have a perfect amazing new body that won't be ailed by anything.

God's timing is perfect and may not be the same as mine. He has a plan and it is so much better than mine. I will put my life in His hands and trust His perfection.

I have my Social Security Disability hearing this coming Monday. This is another thing I am trusting God on. We have been so amazingly blessed to be able to make our budget work since I've been out of work, but this would help us get out of debt so much quicker. I am hoping that it is part of God's plan that we will get the Disability money. It's been since November of 2009 that we applied. I don't know how long a decision usually takes after the hearing, but we are praying that it will be quick and decisive in our favor.

Thanks for praying! “Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven. For where two or three gather in my name, there am I with them.” Matthew 18: 19-20

With faith, hope, and love,

Kate

Held back by fear

2011-03-18T16:40:00.001-04:00

So... not much to update anyone on. I have nothing new on the doctor front to report. I was sick for a while and struggling with that. I think when anything is thrown into the mix on top of PCS, it gets exaggerated. I feel like it's difficult enough and it's hard to handle any more discomfort. I rescheduled my next appointment with Dr. Leddy for mid-April.

It's been 10 days since I've been feeling better from being sick and I've been doing great on the treadmill. I'm trying to also take the same approach from my treadmill therapy and apply it to the rest of my life. I feel like if the issues I'm having with symptoms in social situations might be related to a stress disorder that can be dealt with through therapy, then I might be able to work on it myself.

I'm not discounting the success of therapy. I think talking about issues and finding out what's going on can be so helpful. I couldn't get an appointment at the place that takes my insurance until the middle of April, so I thought I could try to take a crack at it myself.

I've been easing myself into social situations and trying to push my limits a little at a time. I feel like I might be seeing some success. I know it will take a while to build up my endurance, but maybe regulated exposure to social situations can help me to build up a tolerance.

I also found that I was being held back by a fear of being better. I wonder if the “new” me that has existed since the head injury will disappear when I'm better. I've grown so much and love who I am now. I learned what my true priorities should be. I learned how to give up control of everything. I learned how to fully love myself for who I am. I learned that the amazing King of Kings, Lord of Lords is the greatest love of my life! I learned how to have a positive, wonderful, and healthy relationship with my husband. I learned how to appreciate my children. I could go on and on.

I don't want to lose the person I have become. I think that may have been holding me back for a while, but I feel more secure now in that fear. I think it's good to be aware of it and cautious that I don't slip back into my old ways, but I can't let it rule me.

Hopefully the more I can trust and let go, the better I might feel. I am glad that I followed the path of looking inward. Sometimes I think I just need someone to tell me that it's ok and I'm not going to hurt myself more if I do something. A special thanks to Dr. Leddy for being that person that God used to deliver that message.

Please pray that I will continue to see progress on the treadmill and out in my life. Maybe one day soon I'll be driving, jumping on the trampoline with my kids, dancing with my husband.... :-)

With faith, hope, and love,

Kate

PTSD and Concussion linked?

2011-02-08T10:28:00.000-05:00

It's been 2 weeks since I've been able to get on the treadmill, and it's getting frustrating. I've been sick with nausea, vertigo/dizziness, headaches, swollen glands, etc. I have a test Friday called a VNG to find out where the vertigo is coming from and how to go about resolving it. Up until the vertigo started, I had been making some pretty great progress on the treadmill, getting my heart rate up to 160 with no symptoms.

When I saw Dr. Leddy today I brought up the fact that although my exercise tolerance was increasing, the feeling of being overwhelmed in social situations is still a problem. I get nauseous, fatigued, and headaches still when I'm in a crowd of people and sometimes just at home with Dan and the kids if it gets too loud. Even just going to church or to the store causes problems for me for the whole day.

He thinks that we should explore the possibility of it being two separate issues. He wants me to try and seek counseling for PTSD, and thinks that might be the problems I'm having in social situations. He said it could be a result of the head injury, maybe not knowing what happened in the first place. It could be any number of things. Does anyone have any experience with PTSD or counseling that has helped? I'd really like to hear about it if you have.

I'm waiting to hear the test results of the VNG to move forward on the vertigo, etc, and I'm actively looking for a PTSD counselor in the Lockport area who takes my insurance (again – any suggestions?). Please pray about these things. I've never really approached anything like this and am a little nervous and hopeful. If it really is a PTSD issue and can be resolved, this could improve my quality of life drastically!

I did some digging and found a couple articles that make me feel completely opposite. It makes me think there might be a link or a symptom overlap or something. What do you guys think?

http://www.brainsource.com/mtbivs.htm

http://www.injuryresources.com/brain-injury/braininjury178.html

On a positive note – I got my hearing date for Social Security Disability. It will be April 11, and we are really hoping to be approved. We applied in November of 2009, were rejected in March 2010, and just got the hearing date for our appeal. It's crazy how backlogged they are!

Thank you for all your love and support. God is great and faithful!

Love, Kate

Breakdown

2011-01-30T08:18:00.000-05:00

Friday night, I was overcome with anger for the first time since my head injury in June 2009. I was so beyond frustrated and couldn't believe how I felt. My whole body was hot and shaking and I couldn't stop the tears from filling up my eyes and covering my face.

My husband was kind enough to let me have my fit without offering anything more than a hand on my arm to let me know he was there. After the anger was finished burning itself out, I immediately felt shame and sadness. It's been 19 months and there is no end in sight.

People tell me I have improved, and I know that on paper I have improved. I still feel terrible every day, though! So.... are terrible and more terrible all that different? I have been told that it is a slow recovery and could take another year or more before I'm back to the level of health I enjoyed before the injury. It's devastating to me sometimes to think further ahead than today. Even tomorrow gives me angst.

I know that God is with me. I can feel Him beside me, I can feel Him holding me. I am so grateful to have Him and I couldn't have made it this far without Him. He is everything. A friend shared this quote with me today: Sometimes God calms the raging storms. Other times He lets the storms rage and calms His child...

I hope all of you in this raging storm with me have the Lord Almighty to calm you as you go through this.

I have come to the conclusion that it's ok to break down. It's ok to get frustrated, angry, sad, and all the other 30 emotions I can feel in an hour. Job questioned The One. Others have too. God wants us to know Him, not just obey Him. I love to be able to speak to my Father and I couldn't go another day without that.

Ups and Downs

2011-01-10T14:37:00.002-05:00

We saw Dr. Leddy today, but there isn't much new to share. My progress is continuing and I am to just keep pushing my heart rate further and further. I can comfortably do 20 minutes keeping my heart rate under 138 so far, and he's given me permission to push up into the 140's. We may do another functional MRI to see if there is any visible progress in the blood flow to my brain during tasks.

I am trying to get over this virus that's been going through my body. I was sick with a cold type thing for a week, that got better, but now I feel nauseous and tired. I'm not sure if it's symptoms of my concussion getting the best of me, or a virus working it's way through my body, or some combination of both.

Please pray that I can stay healthy so I can keep making progress in my treadmill treatment. When I'm able to be consistent on the treadmill, I feel better. I have more energy and my symptoms are easier to manage. I only had 1 migraine a week for the past 6 weeks, so there is improvement there. The medication I have to treat the migraines also seems to be working pretty well.

Thanks for all the prayers and support. It's been 19 months now, since the first head injury. I go through ups and downs in my attitude and outlook all the time, but it helps me to know that I'm prayed for by so many.

Waiting...

2011-01-07T13:40:00.003-05:00

I'm steadily moving along with my treadmill therapy, but I'm finding that I'm reaching barriers that I can't push through. I hit a HR of 135 and after that, my symptoms cause me to reduce my speed or incline and keep my heart rate lower than 135. For a while, I had been able to push through the symptoms and push my HR to 140-145 symptom free.

I was sick for a week with a cold and it's possible that I got back out of shape and it's just taking time to get back up there. I shouldn't complain really, because I am supposed to only be able to get my heart rate in the 120's without symptoms.

I see Dr. Leddy on Monday, and it feels like 6 weeks without seeing him has brought down my morale. Maybe it was just being sick with a cold. I don't think there's much to gain by seeing him, because my condition won't improve just with seeing him. I think he has a good way of reassuring us and helping us understand what's going on and why. I always feel better when I leave his office.

I want to try to get on the treadmill today, but I have a headache threatening to become a migraine any minute and the nausea is not staying at bay today. I'm also having trouble with fatigue today. The headache hasn't been as constant lately, but the other symptoms (nausea especially) have been more prevalent.

I don't know really what any of this means, and it might not mean much, but anything different seems encouraging to me. I'm sleeping more and better too, but also having more vivid dreams that I can remember more easily.

I'll post an update after I see Dr. Leddy on Monday.

Social Security Disability, Student Loan Discharge

2010-12-18T16:43:00.001-05:00

Social Security Disability can be a hassle and it takes a long time. I was disabled in June of 2009, I applied for SSD in November of 2009, and I was rejected immediately. The office didn't look at my reports from my neurologist or my primary care physician before they made their decision.

I applied for a hearing to appeal the decision in February 2010, and am still waiting on my hearing. I hired a lawyer and they are taking care of the hearing for me when it comes around. They tell me that it will be a slam dunk and there's no way I won't be approved, but waiting patiently is tough!

I just found out a week ago that you can get a conditional discharge on your student loans for 3 years, and it can turn into a final discharge if you are still disabled after that time period. You have to be totally disabled or earn below the poverty level. I just applied today and hope it will go through. I got a forbearance, which lets you be relieved from paying it for a few months, but a discharge, where they forgive the loan would be so helpful!

Let me know if you need help finding the information. Has anyone had success stories with SSD?

Progress... what's that?

2010-12-13T19:52:00.000-05:00

I'm cautiously optimistic, but I think I might be making some progress. When we saw Dr. Leddy 2 weeks ago, he set my target heart rate at 123-128 for my 20 minute treadmill therapy. I have gotten to a point where I can do the 20 minutes at that heart rate symptom free. I called Dr. Leddy today to let him know about my progress. We are increasing my target heart rate to 140-145 for another 4 weeks until I have my next appointment.

I feel like I can have hope now and that maybe I really will be able to get better. I'm still going to take it one day at a time and try to keep my activity level under control. Dan and Dr. Leddy want to make sure I don't overdo it and even if I feel better, the more rest I have the better my brain can heal.

It's amazing to have you guys to have supported us through the last 18 months of this. I am so grateful to God for His constant faithfulness and love. Thank you for loving us and lifting us up. Seeing some progress after so long without any is so encouraging and so exciting! Please pray specifically that I will be able to continue to rest the way I need to so that my body can heal and I concentrate on the treadmill therapy.

Progress....

2010-12-01T12:34:00.002-05:00

I have had 2 doctor's appointments since my last update, and both were very positive. I feel renewed with hope and a good attitude for now and am excited to move forward with my treatments.

I had 11 migraines this month, so they are not slowing. I have been struggling with the medication for my migraines. The new types of medications they gave me at my neurologist appointment seems to be working better than anything I've had so far.

Although the Treximet I had been on from the beginning helped the migraines, it was tearing up my stomach because of the Naproxen in it. The Maxalt they switched me to didn't bother my stomach, but didn't touch the migraines. Now I have been given Imatrex and Naprelan. The two medications together are basically the same as the Treximet I used to be on, but the Naprelan only releases 10% of Naproxen into the stomach.

I was also given a prescription for Sumavel DosePro, which is a needle free injection of Sumatriptan. It's basically like Imatrex, but works so fast! You can use it when a migraine comes on unexpectedly or when you wake up with one. It hurts a lot, but within 5 minutes my migraine started to go away. It's definitely something every migraine sufferer should have in their arsenal of medication.

When I see Dr. Leddy, from UB, I always feel better. He helps us understand my condition better every time we are there. He has increased my target heart rate on the treadmill for the first time! I'm so excited to see a little progress. I have been able to maintain my new target heart rate of 123-128 for 20 minutes the last 3 days!

I start on the treadmill now at a speed of 2.5 and incline 0.5. Over 3-4 minutes, I work my speed up a little at a time until I reach the 120's. I steady it out and raise and lower the speed to keep me within my target range of 123-128. I go for 20 minutes total (including the time it takes to get to my target rate). If my heart rate goes above the range and I can't bring it back down, or my symptoms get to be too much, I stop.

When my heart rate goes up, more blood is sent to my brain, but it doesn't stop when there's enough blood there. My brain gets flooded with too much blood and that's what makes me dizzy, nauseous, headache, etc. The theory is if we push the symptom threshold, slowly, that my blood flow and heart rate will begin to regulate themselves automatically again.

Please pray that I will stay healthy and be able to control my activity so that I can continue to make progress in my treatment.

Thanksgiving?

2010-11-25T23:27:00.001-05:00

On a day where I am supposed to be celebrating thankfulness and feeling gratitude, I'm unfocused and distracted. This seems to be the only way to describe the way I feel when my weaknesses are being exploited.

Unfocused.

Distracted.

What does that even mean? I'm feeling attacked. You know what it feels like when you can see yourself and you know in your mind what is going on, but you can't stop yourself anyway? I'm wallowing and I want to make myself stop and acknowledge the things I am so deeply grateful for.

There are days where I can see the joy and the glory of the King that He puts inside me. Then, there are these days. On these days I'm disappointed. I'm feeling beaten down. I'm feeling frustrated to be where I am. I know it's momentary and light, but in the moment it feels like it's swallowing everything else up.

I know satan won't win. I have God woven through every part of me from the inside out. I have a general peace about this time in my life. My temper tantrums are brief and forgotten easily by the gifts and blessings I have every day.

Right now, the way I feel – it will be gone by tomorrow. Even though I can hate this moment and I want to be better so badly, I know that my journey has glorified the perfect, blameless, righteous, holy, awesome, mighty Rock, whose hands I place every single day in.

I want the world to know that my life belongs to Christ the King. If my struggle can show His faithfulness and grace, I would be honored to continue.

I just want you guys to know that I feel this way too. I can talk about God's glory and love, but I feel frustrated, disappointed, angry.... so many things. I feel them often, and it causes problems. It doesn't mean that I don't love God or I'm not thankful for the great things in my life, it just means it's ok to feel this way.

Happy Thanksgiving.

Update

2010-11-15T14:35:00.001-05:00

Things have been stagnant and frustrating lately. I know it's supposed to be a long road for me and that it might not end, but my human impatience is getting the best of me. I had a cold and a sinus infection for 2 weeks and I wasn't able to get on the treadmill for that time. I am going to try and get back on this week if my heart rate will cooperate. Dan and Bella have also been sick and it makes things tough around the house. It's so great to have help and encouragement from our church family to get us through these rougher days.

I'm trying to stay positive and keep trusting in God's timing. So many great things have happened through all of this and other than my health, life hasn't been better. My honesty and humility are continuing to improve, and it's easier to let people help us.

Please keep praying for us: for my health, Dan's ability to take care of everything around the house, the kids to continue to thrive through this, and our faith in God and His ways.

I see the neurologist on Monday next week and then I see Dr. Leddy from the UB study the following Monday.

Ugh!

2010-11-05T16:11:00.002-04:00

I've been really miserable this last week. I think I caught some sort of a bug on top of all my other symptoms I have to deal with daily. These are the days where you know that God knows more than you do about your strength.

I can't tell if I'm sick or if this is just a really long relapse. Since Saturday I've gone through 12 boxes of tissues! It's ridiculous!

It's been affecting my treadmill activity too, which is disappointing. I was so excited to be able to produce consistently on the treadmill and feel like I was maybe making some progress (for 3 days). My heart rate has been out of control and too high for what I've been doing. I haven't been able to go for 20 minutes every day either.

Hopefully this dark cloud will pass soon. I'm trying to stay positive. There's a free "read through the bible" website that's been very encouraging for me during the last few months. You can pick from different reading plans that suit your needs and wants. It's www.youversion.com. I'm reading the "Psalms and Proverbs" plan and it's been inspiring.

David went through extreme ups and downs. He was righteous and a sinner, and he loved God. It's great to put things in perspective by reading through his struggles and his cries to God. It helps me remember that it's ok to call out to God and not have to put on a brave face for Him. We can be real, broken, disappointed, frustrated.... and He loves us anyway. It's an amazing feeling to know that He is here and He's not leaving me.

Research Articles

2010-11-01T09:40:00.002-04:00

Hi guys, I re-read through some of the articles that Dr. Leddy from the UB Concussion Clinic has written. It's really cool to be able to understand the physiological side of what happens to your brain and body during PCS. It's a lot to get through, but if you break it up and read it a little at a time it's really valuable information.

http://concussion.buffalo.edu/management%20of%20concussion%20and%20post%20concussion%20syndrome.pdf

http://concussion.buffalo.edu/Leddy%20NeuroRehab.pdf

I feel like I understand better what is going on in my brain and how the research study I'm in is working.

Concussion Clinic Appointment Today

2010-10-25T16:12:00.002-04:00

Well... Dr. Leddy used the words "turned the corner" today. The appointment was very encouraging. My treadmill numbers have been climbing steadily. I actually went for 38 minutes and 40 seconds last night! The key is not the amount of time spent on the treadmill, though, but my tolerance to symptoms when my heart rate increases. The plan now is for me to go 20 minutes a day (if I can) at the same low speed and no incline and record the highest my heart rate goes. Up until now, I've been just going until my heart rate reaches above 115 and then stopping before I aggravate my symptoms.

So, with this new plan, I should see my maximum heart rate decrease over the next month while I do my 20 minutes on the treadmill. The point is to push the heart rate that I start to show symptoms at. When I see him again in a month, we will reevaluate and see if we can increase the intensity. He said it should be a slow progression for me and I can't push it.

Update 10-20-10 / Sobakawa Pillow

2010-10-20T14:56:00.003-04:00

It's been a rough week, but I think I'm getting through it. I ended up with a migraine Sunday night, but I got my medicine in time. I relapsed with the nose stuff on Monday, and it got really bad. I had a migraine sneak up on me that evening and didn't get the medicine in time. It was one of the worst migraines of my life. I'm still recovering from it, but the relapse seems to be over for now.

It's frustrating to get so bad and just want this all to be over. It's not a picnic any day, but most days I can tolerate all the symptoms. When it gets to be like it did on Monday, I wonder how strong God thinks I am! I got through it though, and am here today, so I guess He knows me better than I know myself.

I'm trying to stay positive and keep taking it one day at a time. I see Dr. Leddy on Monday and we'll see what he has to say about the treadmill stuff. I wasn't able to get on Monday or yesterday, but I'm going to try today.

Thanks again for all your prayers and support. I don't know how I could get through this without such a loving family!

1 Cor. 10:13 No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

On a different note: My husband bought me a Sobakawa Pillow last night. I was skeptical about it, because I've tried so many different things for my neck and nothing has been good. The pillow is AWESOME! I can't believe how good my neck felt when I woke up. It wasn't stiff, and I was able to sleep longer than I have been able to in a while.

If you are having trouble with headaches and neck pain, I would definitely recommend it! Here's the website. You can also buy them at Walgreens.

https://www.buythepillow.com/

10-27-10 Pillow Update:

After using the pillow for a few days, I am no longer satisfied with how it works (for my needs at least). I have found that it is firm at first, which is necessary to support my neck, but that I was waking up at several points in the night trying to regain that original firmness. It doesn't hold it's firm strength throughout the night, and my neck pain has increased as a result.

I've spent the last few days researching other pillows and can't seem to find anything that might work. I may try the Tempurpedic Classic, but I'm looking for a significant coupon somewhere to buy one. It's crazy to be spending all this money on pillows, just to find that they aren't working!

Any suggestions?

One migraine can't get me down

2010-10-14T17:17:00.003-04:00

It's been going ok since my last update. I didn't have a migraine for almost 2 weeks, and then I got one on Sunday. I'm trying to just stay positive and keep sight of the fact that it had been so long without one. I can't let my setbacks take away from the wins. I have been able to get on the treadmill every day for 15 days now, except for Sunday. My time keeps increasing, and it's so encouraging. I did 9 min and 30 sec on Saturday, and after my migraine Sunday I was back to 7 min and 20 sec on Monday. I would appreciate prayer on my ability to keep getting on the treadmill every day. I know it's going to keep taking time and I shouldn't be impatient, I'm trying to trust the process.

I still have the same other symptoms every day. Not getting migraines is a huge relief, but the every day headache is still there. It's manageable for me, because I've gotten so used to having it. I still have the nausea, some fatigue, and other cognitive/balance type issues. I have to continue to let my body rest and use the strength I have for the treadmill treatment. I feel like God is giving me a real light here with me not getting my migraines so much anymore. It's been a huge relief!

I see Dr. Leddy in 2 weeks, and I'm excited to show him my progress. We're praying that my migraines stay away and I'm able to keep myself from over-doing it.

Update Monday

2010-10-05T00:10:00.000-04:00

I haven't had a migraine since Monday, September 27! It's an amazing feeling to go a whole week without one! Please keep up the prayers for my migraines to stay away. I was able to get on the treadmill 7 days so far for 2 minutes! I'm so encouraged, but please don't stop praying.

Even if the migraines stay away and I'm still able to get on the treadmill consistently, Dr. Leddy believes that it could take 6 months to a year before I am able to have a recovery through this program (if at all). I have to try to make sure that I don't push the activity and focus all my energy on letting my brain heal and being able to get on the treadmill daily.

The withdrawal symptoms are getting better. This last relapse I had Friday-Sunday was the shortest one and was under control by this morning. Please pray that I won't continue to have these rough relapses of withdrawal symptoms. I'm falling asleep pretty well and only waking up once or twice during the night.

This spot of light in the recent darkness is shining so brightly for me. It's great to see some hope.

Concussion Update 9-27-10

2010-09-27T13:31:00.002-04:00

Dan and I saw Dr. Leddy this morning, the concussion research doctor. Although there is no cure for Post Concussion Syndrome (PCS), he does give us hope and is willing to work with us in a caring way. We are so fortunate that he lives in Buffalo and does his research here, because he is very interested and invested in me being able to be a part of his treatment plan.

Once again this month I had 12 migraines. This number has been consistent throughout the 17 months that I have had PCS. It ends up being on average 3 a week. The migraines are preventing me from the treadmill treatment that Dr. Leddy's research study prescribes.

The results from my endoscopy came in yesterday. The biopsies were negative – yeay! Dr. Leddy seems pretty confident that the gastritis (inflammation) they found in my GI tract is from the migraine medication I've been taking for the last 17 months. We are going to switch from Treximet (which has Naproxen in it) to Maxalt. Maxalt is another type of migraine medication that I can take when I start getting a migraine to help it go away, but it doesn't have Naproxen in it, so it should be easier on my stomach.

I had been trying for a few months to come off a daily medication I was on called Amitriptyline. It was prescribed to me in the beginning of all this to help with sleep, headaches, and pain. We are not sure if it has ever worked at all, because my sleep hasn't been restful or consistent since the head injury. I stopped it 11 days ago, but the withdrawal from it is very difficult.

The symptoms from the withdrawal include: allergy-type symptoms, stomach issues, paranoia, hot and cold, and just a general poor feeling. They said it should take 3-4 weeks for it to fully come out of my system and I just have to tough it out during this time. It's pretty horrible, but when it's done, we'll be able to reevaluate how I feel. Fatigue is a side effect from the Amitriptyline, so without it I may become more clear and sharp. Let's hope and pray that my health might improve without the drug in my system.

Thank you again for all your support. Dan and I continue our journey toward humility, and you have all made it so much easier to get there. We have gotten meals from some of you, we have had our house cleaned, we have gotten cards, and there has been a great general response of love and support. We know it's been a long time that I've been sick and it speaks volumes of your love and endurance that you have stuck by us and continue to help us through this.

We continue to appreciate any help that people are willing to give. It's been easier since the kids started school, so they are in good shape. Meals are always appreciated, and just knowing that you are interested in what's going on and are here for us means the world.

Amitriptyline Withdrawal - UPDATES day 7-day 32

2010-09-23T09:12:00.010-04:00

I'm on day 7. It's no picnic still.

My runny nose has subsided for the most part. It's still there a bit, but not as bad as it's been.

I think things have run towards my stomach now. I am having some stomach issues and they aren't too bad, but definitely there.

I also have this feeling of severe drunkenness in regards to my balance, the room spinning, feeling fatigued. It feels like I can't be on my feet for longer than 10-20 minutes and I'm feeling disoriented. I also feel like I can't remember a lot and I'm having trouble finding the right word for things.

I will keep posting through my withdrawal. It is scary to not know what to expect and I hope I can help others who are trying to get through this at some point.

I see Dr. Leddy (concussion doctor) on Monday, and we'll go from there in regards to my next steps.

Day 10 - I thought I might be through the worst, but the runny/stuffy/itchy nose and eyes started up again yesterday.

I'm having trouble moving past this in so many ways. I feel stuck. Physically, emotionally stuck. It's frustrating and it makes me just want to go numb.

My husband is being perfect. He's supportive without being overbearing. I have a great relationship with God. It's just a weird place to be. I want to move past this feeling of "stuck".

I slept for 5-6 hours last night, and about the same the night before, so I'm sure that's not helping matters.

Doctor tomorrow.

Day 14 - It's getting easier every day. I still have a runny nose from time to time. My stomach has been bothering me a good amount. It's not constant anymore.

I'm not having as much trouble sleeping as I thought I would. I've been consistently waking up once a night. I'm waking up with a hot sweaty flash.

It's hard to stay asleep in the morning when I wake up from a noise or something. I've just been getting up instead of trying to fall back to sleep.

I try to lay down during the day a few times to rest, and that's been helping things.

Day 17 - Had another relapse of withdrawal symptoms yesterday and today. I'd pay good money for my body to start producing natural antihistamine again!

It's tough to do anything when your nose is running like a faucet. I haven't been getting the hot flashes for the last few days. My stomach is settling down. I think things are getting better day by day.

It's hard to imagine while I'm in the middle of all this that I'll come out of it. I know the doctors said 3-4 weeks and I'm not even at 3 weeks yet, but it seems like it's been such a long time.

On the plus side, I've been able to string some consistent days together on the treadmill. I need to make sure I keep hydrating and eating to get through this withdrawal.

DAY 30 - Oct 16:

It's Saturday, the day I typically go through a relapse of withdrawal symptoms. I have a little sniffle, but it's not bad. I don't know if I'll relapse today, but I'm hoping that I don't. I didn't have any problems last night, and I usually start the night before.

I am still having a little bit of trouble with waking up in the night. I have to force my self to stay in bed and believe I'll get back to sleep. At first, I feel so wide awake. My nose gets runny, my throat is dry. It feels like I won't get back to sleep and I should just get up. If I make sure to stay in bed and keep my eyes closed, I can get back to sleep sometimes. Usually, I use that time to beg God to get me back to sleep. Today I slept until 9:30, which is pretty good for me!

If today I'm relapse free, I will feel like the withdrawal is over. So, for those of you who are discouraged and feel like it'll never end, HANG IN THERE! You can do it! There have been several times that I felt like I wanted to give up and get back on the meds. I am so glad that I've stuck it out. 30 days is a long time when you are going through these horrible feelings day after day.

I'll keep posting about the recovery from my Amitriptyline withdrawal, and let you guys know if I relapse today.

DAY 32 - Oct 18

Ok, I was wrong. I just relapsed last night again. I started the runny nose and all that comes with it along with a pretty bad migraine. I took a Maxalt and fell asleep eventually. I woke up just as bad as the last time. Runny nose, sneezing, watery eyes..... ugh! It's really rough.

I'll keep you posted as to how long it lasts for.... :-(

Amitriptyline (Elavil) Withdrawal

2010-09-20T23:57:00.006-04:00

It's been a few months since I've been weaning off the Amitriptyline that I've been taking for a blanket treatment towards my PCS. The theory is that in low doses it has been shown to help with 3 symptoms: sleep dysfunction, headache, and pain.

When I was first diagnosed with the PCS by Dr. Kang from Dent Neurology, he started me on 10 mg of Amitriptyline/night. He first gave it to me because I wasn't sleeping at night and when I did sleep I had very vivid and disturbing dreams.

When it was discovered that I had herniated discs in my neck, the Amitriptyline was gradually increased to 75 mg/night. When my neck became better, I wanted to try to reduce the amount of medication I was taking and eventually try to see if I could come off the Amitriptyline altogether.

I decreased to 50 mg the first drop, and then dropped in 10 mg increments every two weeks. Every drop was very difficult for me. I've had every side effect for every medication I've been on, and it seems that I am also sensitive to changes in medication.

The symptoms are always allergy/cold type symptoms with a low grade fever and sleep disturbance. It also feels as if I'm drunk. There is dizziness, vertigo, radical temperature changes, increased light/sound sensitivity, itchy/watery eyes, itchy/runny nose, nausea, headache. It feels really crappy, and scared me the first few times.

I just did my final drop 4 days ago. This withdrawal is the worst so far. I feel as if something is seriously wrong with me. It's scary and very difficult. I suppose there are psychological symptoms like paranoia with it too. It's not fun at all, and it makes me want to get right back on the medication, even though I'm just trying to get off it.

I hope it is not all for nothing. There could be benefits from the Amitriptyline that I'm not seeing, because I've been on it for 16 months.

I know there are negative side effects that come along with it. My fatigue has been the worst symptom of mine lately and the doctors and I discussed this being related to the Amitriptyline. If getting rid of it can help my fatigue go away or be reduced, I might have a shot at being able to stand more activity and going further through the research study.

I see Dr. Leddy in a week, and I'm anxious to get past this horrible withdrawal. I know how scary it's been stepping down off of this and I hope this post can be helpful to others going through the same thing.

I haven't seen much research online about it, other than it being associated with mental disorders in much higher dosages. I know that you are not supposed to stop it altogether, and have to step down very gradually. I didn't think that I would be so affected by the withdrawal stepping down in such small amounts.

Pure joy

2010-09-11T16:54:00.001-04:00

This month has had its ups and downs. Acupuncture hasn't helped anything, and the doctor doing it has said she doesn't want to waste my money anymore if it isn't helping. I am taking a break from it for know, since it isn't helping anything. I tried 3 visits with her doing different things, and she doesn't think she is able to help me at this point. I was pretty discouraged by that, and feel at this point as if there really is no medical answer for the migraines I'm having 2-3 times a week.

In the meantime, this stomach issue has been bothering me ever since I had my gallbladder out in April of 2008. I was in the emergency room last month with really bad upper GI pain that caused my blood pressure to go up, my heart to race, and me to pass out. We thought maybe it was my heart, but I was cleared and referred to a GI specialist. I saw her on Wednesday, 9/8 and her next step is to give me an endoscopy. I go for that on Wednesday, 9/15 - this coming week.

Please pray that this procedure will go smoothly. I will be put under general anesthesia, but it's a short procedure. I will be out for probably an hour at the most. Please pray that the doctor doing the scope will find something conclusive that is causing my pain and that there will be a way to fix it. There are several possibilities they are looking for including: ulcers related to the migraine medicine I've been on for over a year, some sort of complication from the gallbladder surgery where a valve isn't able to work properly, or any other visible issue through the scope. If they find out it is a dysfunction in the valves, I'll have another endoscopic procedure they can do to figure out what the dysfunction is.

All of this, coupled with the head injury stuff has been discouraging. I also had a cold this past week and a stomach bug, so it's been dark. I know that God will not give me more than I can handle, and that I'm stronger because of all of this. I know He's with me and walking along side of me. I can't imagine going through this without Him.

I'll see how this GI stuff goes, and I see Dr. Leddy (UB research doctor) at the end of the month to discuss the next steps in my concussion treatment plan. For now, it's just rest/sleep as much as I can, limit everything I do, and continue to take the same medication.

My journey towards humility is going forward slowly but surely. I'm able to accept help more and more each day. It's good being honest about what's going on with me. Especially when it allows people to know how to help and what to pray for.

James 1: 2-4 Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

Back on the horse... er, um... treadmill

2010-09-02T13:23:00.002-04:00

I had a dentist appointment yesterday. I have been on "bedrest" (couch-rest really) for the past 3 weeks and going to a dentist appointment and lunch wiped me out. It's really becoming clear that I need to use the energy I have to get on the treadmill every day. That's the whole point of me doing nothing else. I have to try.

I got on the treadmill today. I could only go for 50 seconds and now I have a headache, but I tried. I'm going to try again tomorrow as long as my migraine is in check.

I had my 3rd acupuncture appointment on Tuesday. This one hurt a little bit. The doctor said that she doesn't see any improvement yet, and we are taking a break for a few weeks. It would be nice if it were helping, but I don't think it is.

It's really my physiology that's messed up. Like clockwork, I'm getting 2-3 migraines a week. I can sit around and do nothing or aggravate my symptoms by being active, but I still get the migraines in the same way at the same times.

This is really proving Dr. Leddy's research. My brain and my circulation are off and not working together properly. It's so amazing that he's able to figure this stuff out. Hopefully with the rest from everything else in life, I can concentrate on doing the treadmill and maybe it will get my system back to what it needs to be.

I'm keeping track of my symptoms and my treadmill activity and I will keep everyone posted. I think the key to this research study is the ability to concentrate fully on rehabilitation without using your energy on other things.

Acupuncture

2010-08-30T13:47:00.003-04:00

We have tried all the prophylactic migraine treatments that we can think of, but the side effects hurt me more than the benefits might help.

Topamax (Topirimate) gave me extreme fatigue that glues me down and makes me feel as if gravity is working against me.

Propranalol made me so depressed that I was curled up in a ball crying the week before my birthday. My birthday (ask anyone who knows me) is the greatest month of my year for me usually. They took me off it before I started having serious thoughts of suicide.

There isn't much else out there being used to prevent migraines. Treximet helps when I get a migraine (as long as I take it before it's too late). I am prone to complex migraines that make parts of my body stop working. I have had complex migraines that made stroke-like numbness/weakness appear in one side of my body or the other. I have had central apnea (your brain stops telling your lungs to breathe while you are awake and asleep) from a migraine.

Bottom line... I should not let myself get a migraine.

Maybe I'm just sensitive to medications, but they aren't working for me. I'm trying acupuncture. I have my third session tomorrow. I haven't noticed anything positive yet, but I'm giving it a chance.

It doesn't hurt. I feel really tired after and have some weird tingling/numbness/weakness in my body. I have a weird craving for wonton soup after I'm done. I know that when she puts the pins in, it gives you this weird warm rushing feeling in your body. So... It's doing something, I'm just not seeing anything yet.

I'll keep everyone posted.

Where I am.... PRIDE

2010-08-30T13:42:00.004-04:00

I'm dealing with my pride right now. James 5 has some amazing verses about healing and faith and prayer. Read through the whole thing. There are some exciting parts, but there is also some work involved.

I'm trying to put my pride away and get help. It is so hard! I know that if the situation were reversed, I'd be there in an instant to help a friend or a family member going through this. Why am I trying to rob them of their blessings and gifts they want to give me?

I'm putting away my pride. I've written down every symptom and I'm asking people to take one thing and pray about it daily. I have 2 people signed up and I'm working on asking certain people to take certain things.

I'm not the only one with pride, though. I have to get help for my family and I, but it's hard to tell your husband to put his pride away too. God wants us to be honest, humble, and to lean on each other as a family. I'm trying to give this up to Him so that He can heal me.

This is so much easier said than done.

Dan has taken every task away from me. It's good. It's hard, but it's good. He is handling the cooking, cleaning, decision making, everything. I am to just sit and rest and get better. It's hard to watch him struggle through this, but he is so supportive and he still has energy left to tell me I'm beautiful and he loves me.

I can't imagine being in his position after going through this for 15 months. I know I would be the same way as him, but it's tough to be on this end of it... watching him do EVERYTHING!

I am glad to be giving up my pride, and I know it will help.

UB Research Study Information

2010-08-30T13:34:00.004-04:00

Here is the website for University at Buffalo's Concussion Clinic run by Dr. Leddy. I've been in this program since April and he really has a good understanding of PCS. I don't know if he can help you, but I know that my involvement in the program is very helpful for me.

http://concussion.buffalo.edu/

Ok.... I think i'm really back blogging now

2010-08-30T13:27:00.002-04:00

I'm sorry about not writing for a while. I go through some big ups and downs. I wanted to cut off my media for a while and try to focus on getting better.

I'm still suffering from PCS. I understand things a lot better now and feel like I have a better grip on what's happening to me. It doesn't make it any easier most days.

I'm posting the updates I had sent on my prayer chain at church. This should get everyone up to speed on my condition:

(8/11/10)Hey Guys, I guess I'm due to give everyone an update, it's definitely been awhile. Sorry this is so long, but I wanted to be clear and let you guys know what's going on. I still have many of the symptoms that I started with back in June of last year when I got that first concussion.

After the second concussion in October, they told me I had herniated discs in my neck. The neck issue was keeping me from the treatment that I am trying to receive in the UB research study with Dr. Leddy. My neck has been better since the last update I gave everyone.

I was feeling a whole lot better in terms of neck pain, and we thought that I would be able to get on the treadmill for the treatment, but unfortunately the other concussion symptoms have not been resolved yet.

We have tried a few medications that are supposed to prevent migraines, because I am having on average three migraines a week. I get all the other concussion symptoms daily still (nausea, unsteadiness, low-level headaches, sensitivity to light/sound, memory issues, fatigue) and they all increase as my activity increases throughout the day.

If I stay still in a quiet environment, I can keep things under control. Most days, life doesn't really allow for that for anyone, so I end up with a pretty rough day. The medications out there to control migraines give me side effects that are worse than the benefits. We have been looking for alternative treatments, so that I am able to continue with Dr. Leddy's research treatment.

Today I had my first acupuncture appointment. I'm optimistic, but I'm also being realistic. It's hard to keep getting my hopes up after 15 months of this! I know that God has reasons for everything, and I have seen so many great things come out of me being like this.

I'm really growing weary, though. I humbly ask you for your prayers. I'm restless, tired, and I really just want to be better. I still can't drive, work, keep up with the housework, play with my kids.... Anything that I choose to do, I'm choosing with the knowledge that my symptoms will increase. It's hard to choose anything, knowing I'm going to be worse after it's over.

Thanks for your patience, your persistence, and your prayers! I love you guys for not giving up on me, even though I've been a ghost for the last 15 months.

(From 05/21/10)
Hi Everyone, We've had some ups and downs with regards to what's going on with me. A few weeks ago, I felt like I was all better. I guess since I had felt so bad for so many months that any change was significant. I still have the effects of the concussion, though.

The doctors think that the improvement has been because of my physical therapy for the herniated discs in my neck. I don't wake up with all my symptoms anymore, but I still get them throughout the day. It's a little frustrating, but I'm still grateful to God for the improvement.

I had my second exercise test Monday evening. I was able to go for 4 minutes on the treadmill while inhaling 50% CO2 the last test, and this test I was able to go for 7 minutes and 23 seconds. This is an improvement for sure, and I'm excited about that. The test has left me feeling pretty rundown this entire week. Please pray that my body will continue to heal, so that I can return to my new "normal."

I'm still in the research study, and the doctors seem excited that they can focus on the head injury now, and that my neck problem is under control. I still have to continue my physical therapy to keep strengthening my neck. There are some other issues the doctors are looking at as well.

I have a problem with the oxygen level in my blood. It's normal for us to have 99%-100% oxygen in our blood at all times. My level drops down in the 70's and 80's occasionally. They are trying to figure that out, and it might be related to why my brain won't heal.

Sorry this is so long, I know I haven't sent out an update in a while. Thank you guys so much for praying for me and my family. It'll be a year on June 7th since this all started. It's wearing on us all, but we really appreciate the love and support from our church family! Love, Kate

(From 04/01/10)
I had an extensive exercise test Tuesday night that took about 2 hours. I was hooked up to monitoring systems and asked to breathe into a tube that had 50% Oxygen and 50% Carbon Dioxide for 8 minutes. It was supposed to make my body act as if I was working out at a high level. I still had to breathe into the tube, and I had to walk on a treadmill at increasing incline until I felt as if I couldn't do it anymore. I was able to go for almost 8 minutes on that.

They said that a person who is getting enough blood flow to their brain should be able to go for 30 minutes. Thursday night I'm going to Buff Gen to do a Functional MRI. The test is 2 hours in the MRI machine. I'll be given simple tasks to do while in the machine and they will view how my brain is working (or not working) during the various tests. I was told it will involve a wide array of things from arithmetic to motor skills.

I also am continuing my physical therapy at UB Sports Medicine and Neuro, working to resolve the herniated discs in my neck. He's using traction, stretching, nerve/deep tissue massage, posture improvement, and some strengthening exercises. It's only been a week, so I'm not sure how it's working.

I have a lot of faith in these guys- they really seem to get it and know what they are doing. The test last night was pretty rough on my system, but I'm so excited that I'm able to be a part of this study! No one else in the world has access to this kind of treatment.

It's pretty amazing to see how God's working in my life through all of this. Thank you so much for all your love and support. Please pray with me that I'll be as comfortable as possible during the testing and that the results will be helpful for this study and my health improvement. Love, Kate

(From 03/23/10) Hi Everyone! I just wanted to let you know that Dr. Leddy from UB accepted me into his concussion research study. I'm so excited that out of all the people with concussions, I'm in a position to receive this kind of treatment! I've attached some of the articles about his research and his ideas to heal concussions. I'll be working with the same staff members that have helped rehabilitate professional athletes that have had several concussions like me.

I'll also be doing my physical therapy with the staff at UB, so everything can be coordinated. I'm really optimistic about this study, but I believe that only God can make me better. Please pray with me that He will work through this program to help make me better. It's been almost 10 months since the first concussion, and it's starting to really wear on me. I can't wait to get better! Thanks! Love, Kate

UPdate

2010-02-03T13:29:00.003-05:00

Sorry it's been so long since I've written. I've had so many bad days it's been tough to stay connected.

I had my evaluation for PT a couple weeks ago, and was excited to start my rehabilitation. The therapist was awesome. She was so positive and totally seemed to get what was going on with me. She told me how my neck had become straight instead of curved like it was supposed to be.

She started by getting my full history and enlightened me to all the muscle groups that were being affected by my herniated discs at C4,5. I wasn't aware that there was so much involvement. She did some nerve and muscle stretches with me and evaluated my range of motion.

I left feeling optimistic and proactive about my PCS. I thought that I might get some relief in a few weeks.

I returned the next week to have my first official PT appointment. It was really light. She started with some heat on my neck and then took me through about 5 different stretches. There was some cage stretching, resistance bands, and an arm bike. After those stretches she applied some more heat and then stretched my nerves again.

I was ok when I left, but the next 3 days were rough. I could barely move myself. I felt like I had been hit by a truck. My symptoms were all exaggerated and on top of that, my husband was out of town. I was alone with the kids, and having a tough time with it.

I canceled the next appointment I was supposed to have there, because I was feeling too beat up to continue. I decided I would reschedule for the next week.

That appointment was supposed to be yesterday. I called the PA I had seen at my neurologist's office and checked in with her about the therapy I was receiving. She said that it wasn't the right type of therapy, and that I wasn't getting the craniosacral therapy (CST) she had recommended. She suggested I stop going to this PT place and find a place that actually does the CST.

I called the place she had initially recommended and spoke with one of the therapists. She and 3 others are certified in CST and that's all they do there. I also spoke with the office manager and they take my insurance. Good, good, good. I start my evaluation there this coming Monday. (fingers crossed)

I had to break up with the other PT place, and it wasn't fun. I really liked the therapist that was working with me. She was really optimistic and positive. I hope I'll have a similar experience at the new place.

I also saw a doctor that works for social security, disability. I saw that doctor this past Monday. To my surprise, the visit went really well. He gave me a neuro exam and a physical exam, and said he was making his recommendation for me to receive ssd. I'm encouraged by that, but I know that anything can happen. I'm trying to prepare myself to appeal if I get rejected. I should know either way in about 4-5 weeks.

Other than that, things have been pretty uneventful. I've been so tired that I haven't done much. My hubby worked at the base all week 2 weeks ago, and was gone all last week for a training week for the air force. Two weeks of waking up early with the kids took its toll on me.

This week is back to normal, trying to get back into a routine. Please pray for me and my family. We are all getting frustrated, exasperated, and overwhelmed. It's tough for them to be taking care of everything, and it's hard for me to sit by and watch.

I know that God has given me this opportunity for many reasons. I want to stay positive and trust that He won't give me and my family more than we can handle. It's pretty tough sometimes.

Thanks for listening and praying.

uggggghhhhh

2010-01-15T13:35:00.002-05:00

I thought I'd log in and share with everyone how horrible I feel today.

After all my upbeat attitude yesterday, maybe I've worn myself out. I think the ups and downs of this PCS are really severe sometimes.

I feel like garbage today. Really spinny and horrible migraine. "spinny" is my term for lack of a better one. It feels like i'm on a bad trip or something. I can't really put it together.

I really don't like these types of days, go figure. It's hard to get through it when I hurt this much! Time for some Treximet........

.......

2010-01-14T10:56:00.003-05:00

So, say all you want about couch potatoes like me, but The Biggest Loser is dang inspiring. After another sleepless night, I find myself sipping my coffee and watching this week's DVR'd episode. I immediately got up and made my husband and I a healthy breakfast.

I'm at a normal weight, but I guess that's not really what's important. I've been eating poorly and that's unhealthy. My husband works so hard, that I think he doesn't even have time to plan his meals. He picks up lunch after not eating all day sometimes not until 3-4 pm.

I don't want to use the word "resolution" because I've never kept one. I really just want to get our family eating better. We should eat real food! Fresh proteins and produce- whole grains! It would probably help my health too!

... end rant.

No sleep last night. It was 5am when I realized I had forgotten to take my Amitriptyline. I was totally in between sleep and awake all night. I was half dreaming all night long, and they weren't pleasant ones. Bad nightmares. I felt as if satan was pulling on me. I felt evil pressure for some of the night, and felt like the Lord helped me overcome it. It was pretty rough- scary, too!

I love God with all my heart, mind, soul, and strength. It's tough to feel attacked, but I will always know that God loves me and won't allow me to go through more than I can handle. Read the book of James if you don't believe me.

Hopefully I can rest today and recover from last night in time to sleep well tonight.

Good appt today!

2010-01-07T22:42:00.001-05:00

I saw my neuro today and it was a pretty informative appointment. Instead of my normal neuro, I saw the PA. At first I felt bad about that, as if I was being pawned off. It ended up being really good.

She was very informative and listened to me. The appointment lasted 30 minutes instead of the typical 5. She gave me a lot of information about alternative therapies that she suggested I try.

I've been taking 20 mg of Amitriptyline/day. She is going to up that to 30-50 during the next 6 weeks. She said the Amitriptyline should help with headaches, sleep, and muscle pain. If any of these three symptoms are not being helped by the dose I'm on, she wants me to up it by 10 mg. She said if we get to 100-150 without results, then we'll try something else.

She also revealed to me that I have a herniated disc at cervical C-4 and C-5. This was news to me! I thought maybe the pain I was having in my neck was "in my head".

She suggested craniosacral therapy (instead of regular physical therapy). I just did some research on it, and it sounds very interesting. She gave me the name of an office that does it in the area. She said all my neck, shoulder, and upper back muscles were in spasm because of the spine protrusion.

She also suggested an alternative chiropractor in the area that could help with the migraines. I'm going to see them and get evaluated.

She gave me a vitamin supplement that my neuro group designed to help with migraines. The mix is:

Riboflavin (B2) - 133mg per capsule x 3 capsules/day = 400mg
Magnesium - 133mg per capsule x 3 capsules/day = 400mg
Feverfew - 33 mg per capsule x 3 capsules/day = 100mg

She said they break it up to spread out the benefit and because it's rough on the stomach. She said it could take up to 3 months before I notice any significant difference, though.

If anyone is interested, here's the link:
http://www.pinepharmacy.com/store/in...TOKEN=57744666

I also brought up the UB Concussion study, and she said to go for it. She seems to be very proactive and I'm excited to have some new stuff to try. I'm going to call the UB study and see if I can be evaluated and possibly be a part of the study.

Hopefully I can find rides to all these new things. It would be tons easier if I could just drive! FRUSTRATING!

"I called, you answered, and you came to my rescue...."

2010-01-05T12:06:00.002-05:00

Hillsong, "You came to my rescue"

Falling on my knees in worship
Giving all I am to seek your face
Lord all I am is yours

My whole life
I place in your hands
God of Mercy
Humbled I bow down
In your presence at your throne

I called you answered
And you came to my rescue and I
I wanna be where you are

In my life be lifted high
In our world be lifted high
In our love be lifted high

It's such a simple song, but it's been in my head ever since worship on Sunday. I was brought to tears singing to Jesus this beautiful song. As the lyrics have run a loop in my head for the last 2 days, I've been trying to process them.

I love the Lord with all my heart, but I can't help calling out to Him right now. I'm begging Him to make me better. I'm calling, He's not answering! I don't love Him less, I don't have less faith in Him. I'm just calling....

I want Him to be glorified when I get better. I want it to be because He did it. He's the one who will heal me. My husband said it best "When you are complacent, it's easy to let the things in your life bring you joy. When you are hopeful, the joy is that much harder to find every day. It's going to be harder now that you are hopeful."

It's so true. I will continue to call, and one day- He will answer. He will be lifted high!

The step after acceptance?

2010-01-03T20:56:00.003-05:00

So, I had totally accepted that I have post concussion syndrome and that it may never go away. I was at peace with it and with God. I was excited to see how He was using me and my PCS to glorify Him.

I watched the movie "Akeelah and the Bee" the other day, and something clicked in my head. This quote was the moment things changed:

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? We were born to make manifest the glory of God that is within us. And as we let our own light shine, we unconsciously give other people permission to do the same.

I suddenly realized that maybe I hadn't really accepted that I was just stuck with this. Maybe I was just complacent and afraid. I think I have been afraid of getting better.

It seems so weird to say that I was afraid of getting better. My husband compared it to "survivor's grief" when I discussed this with him. It doesn't make much sense, but it is understandable. I don't know?

Couldn't God's glory be revealed in me getting better? Maybe I am worried about change, or that it would be too hard if I got better. I know who I am in this weird PCS life. I have redefined myself as this wife and mother with PCS. It was so scary and hard to redefine myself to this person, it's scary to think that I will have to do it again.

I'm not sure if these words are making sense, or if anyone gets it.

I am excited about it, though. I am able to pray more earnestly for God to heal me if He sees fit. I want it to be for His glory, not mine. I really believe that it is possible now. Maybe I wasn't ready to believe that God could really heal me, or that I was ready to be healed.

Ok, I don't know about you, but this is really making my head hurt. So I'm going to stop for now. :-)

Neuro appt on Thursday....

Merry Christmas

2009-12-24T11:37:00.004-05:00

Merry Christmas everyone!

I'm so excited that it's finally here! Thank you God for sending a beautiful baby boy with the infinite power to save us! As much as I am in pain and am having a hard time in life, I can rejoice and find joy in the Lord.

He is good!

I hope everyone has an amazing Christmas. It's wonderful to find joy in life's little moments. I am going to enjoy this time with my family and friends and save the suffering for later.

Applying for SSD

2009-12-14T14:23:00.003-05:00

I understand that there are those who may take advantage of disability, but that certainly makes it tough for those of us who really need it!

I completed the 4 hour online application about 3-4 weeks ago. I can't believe the information they needed. It took me so long to fill the forms out, and I was exhausted after I was finished.

About a week ago, I got a new questionnaire in the mail. It was a 10 page form that repeated several of the questions I had already answered in the original application. I also got a second form that just listed 10 questions that I had to answer, further repeating information already offered by me.

I just got home from a doctor's appointment with my general physician, so that she could examine me and fill out the 10 page form they sent her! Will it ever end?

I've been told that the process was time consuming and frustrating, but I guess you never realize until you go through it. Venting just now sure made me feel better about it, though. Thanks for listening....

I have done everything I can on my end for the SSD offices. I guess I just wait for them to send me more information or more questions now. It will be all worth it if I get approved. The bills/debt are starting to take their toll on us.

I have increased my Amitriptyline to 20 mg from 10 mg (as per my neurologist) to help me sleep better at night. I'm still taking a while to fall asleep, but it has been helping me get some sleep. Maybe my body is getting too used to it. I see my neuro again in early January, so I'll revisit this then.

My every day headaches have gotten worse. Could be the weather, added stress of the holidays? It also seems as if the Treximet doesn't work as quickly or as well as it has in the past. It's been a little over 6 months since the first concussion, I wonder what it all means.

I'm still solid in my faith. God has been doing amazing things to and through me! I know that what I have is just the PCS, and that one day, it will be gone. Hopefully I can keep this peace. The prayers certainly help a lot!

links...

2009-12-09T19:25:00.001-05:00

I just got interested and did a little online research. I'm going to pass along the links, but I'm not sure about them. I'll continue looking and maybe we can share what we find.

http://www.anxiety-and-depression-solutions.com/main/CAM.php

http://www.theclarocetstore.com/

http://www.tbirecoverycenter.org/frontallobe.htm

http://www.drugawareness.org/alternatives

I went through a little at a time, take your time to sift through. I don't know what you've tried, but I'd be interested to know.

I'm having more difficulty falling asleep and staying asleep lately. I'm also having more trouble with my daily fatigue. I think my meds are wearing off their effectiveness. I've also had a migraine for 3 days- aaarrrrrghghh!!

Update time....

2009-12-07T13:51:00.004-05:00

I haven't written in a while, so here's an update of what I've been up to:

There was a time when I just felt so overwhelmed with everything and felt like no one really understood what I was going through. I wrote this blog then and was struggling to find some sort of connection with someone. Through the PCS message board, and some other events I have figured some things out.

I'm not better physically at all, but I am better in so many other ways. Although my symptoms have not improved, I am on several good medications and my attitude has changed.

Of course I still have bad days and outbursts. I even get mad and frustrated with God here and there.

I have been focusing on success and not dwelling on what I feel. I can share with you some of the things that make me happy, and maybe you can find it too.

Firstly, My attitude is such that I have stopped worrying about getting better. As much as I would like to be better, it can be frustrating and overwhelming to even think about the future. I cannot plan or think more than a week ahead most of the time.

It's more about managing my symptoms well for me than the bigger picture. I was able to “blah” all my symptoms and feelings out over the Internet in black and white and through that I could see what I was feeling.

I broke my symptoms down one by one and found ways to manage them. I'm managing them well, and I'm able to be happy. I still don't feel good, but I'm happy anyway. I don't know if that makes sense, but it's working for me.

I have an amazing husband who (most of the time) does a lot to help me manage my symptoms. I was waking up with my kids in the mornings and getting them ready for school and on the bus during the first few months after my first concussion. I was exhausted every day and when you are that tired, you are bound to be in a bad mood.

Now my husband gets the kids up and on the bus, and during the week I sleep as long as I need to. I usually don't get out of bed until 11 or 12. Because I can't sleep most nights, or even if I do- I need the extra rest, I feel better when I sleep all I need to. Sometimes people call and wake me up, or on Sundays I get up to go to church, and then I'm feeling junky during the day.

I wake every day with a headache still, but it's much less likely that I get a migraine if I sleep the amount that my body needs.

I am still taking 10 mg of Amitriptyline to help me sleep at night. For the most part it helps, but sometimes I still lie awake in bed and my brain doesn't shut off. It also gives me a lot of very vivid dreams. I see my neuro once a month, and will probably address that next month when I see him.

I take Treximet for when my headaches become migraines. It works amazingly! It has been a great thing for me to have this medication. It usually takes my migraine right back down to a normal headache quickly. It makes me tired, so if I am not able to sleep at the time I take it, I may need to take a second one later, because the migraine might come back if I don't sleep it off.

I also take B12 every day. My physician recommended it for the twitching in my arm, and after a few months, the twitching has stopped.

I've been still struggling with my energy level during the day. My neuro gave me Nuvigil to take during the day, but every time I take it, I can't sleep at all that night. He's going to try Provigil now, I'm just waiting for a pre-auth from my insurance. Even when I wake up late, I only last until around dinner time, and then I want to crash.

My faith in God wavered quite a bit during the first 4 months or so of this. I couldn't find that connection with Him that I had before all this happened. I don't know if I was mad at Him or frustrated with Him or what. I just know there was a tremendous amount of distance between us.

When I went into the hospital and was having my central apnea episodes, there were many moments that I felt as if I was going to die. My husband was praying and crying by my bedside, and it really looked like that was going to be it.

The apnea stopped and I went home with really no explanation. I had it happen again a few times when I was really exhausted a few months later, and that's when I had my big epiphany. While I wasn't able to breathe automatically, I could still breathe manually. It was as if someone smacked me on the forehead and I had a giant “duh” moment.

If God wanted to take me, He would just take me. There wouldn't be a struggle. I wouldn't have to choose between sleep or breathing. This apnea is truly from satan. At that moment I really found peace. If satan was attacking me, I must be worth something to God.

Since that moment, I've kept a tremendous amount of peace and it hasn't gone away. I celebrate the things I can do, and try to manage my symptoms the best I can.

Like I said, I still feel bad physically, but I am able to live happily anyway.

You know how people ask you how you feel all the time, and you don't even know what to say to them? I started answering “happy, I feel happy” instead of any other thing I could say about my physical wellbeing.

I really believe it has so much to do with attitude and focus. I choose the things I do, and I know that when I choose to do something it will affect me physically. I do the things that I really want to do, and everything else gets a “no”.

I know that God can make me better if it's in His will, but that doesn't seem to be the case right now. I've found that there have been amazing things happening through my illness. I wouldn't be as bold as I am now if this hadn't all happened. It's given me a platform to reach more people in ways I wouldn't have had the courage to reach them before.

I am better mentally when I stop swimming in ideas of what this could be, and just accept it for what it is. I have the joy back in my life now. I did lose it for quite a while, though.

I guess I am not really a success story, b/c I am not healed or better physically. I have found success in living with PCS, though, and managing my symptoms (most of the time). I still have days, weeks, or moments where I have a bad attitude and I cry and throw a fit out of frustration.

Sometimes my husband will say the wrong thing, or something will come out wrong and I feel like a burden. No one really understands this, except people who are going through it.

g'mORNING

2009-09-15T10:42:00.002-04:00

Dan took the kids to school this morning and let me sleep in- what a guy!

Feeling crappy. Had lots of twitching and tingling last night before bed.

yuck

Let's Go Buf-a-Lo

2009-09-14T19:49:00.002-04:00

I'm impressed so far by the Bills 1st quarter, but along with so many other fans, I'm cautiously optimistic. It's been a while since we've had a winning team, but so far so good.

Dan is at his men's group bible study tonight- definitely an excuse for a bunch of men to get together and grunt at monday night football, but good nevertheless. I think they get more out of it than they realize. It's awesome for him to have that support from other guys, and while I'm sick like this especially- he needs it.

It's nice to have more quiet to myself tonight too. Usually this is the time when I really start to have trouble, and I can relax pretty easily now. Unfortunately, Time Warner Cable sucks! My DVR is broken and it looks like I'll lose all the shows I had already recorded. I'm bummed b/c that's what I do all day to veg out. It's stressful. Stress = bad for my symptoms.

Pretty good headache now, but I resisted the urge to take my Treximet all day. I definately did too much today, and am wiped out. I had a good talk with a good friend from church today who has MS. She gave me some great insight and encouragement. It's awesome to be developing this support group without having to leave the house. It's awesome to not have to leave the house!

It was tough on the kids today for me to not feel well. Dan doesn't come home on Mondays, b/c work is closer to his bible study and coming home would be a waste. When the kids came home, I took them on a nature hunt in our backyard for different kinds of leaves. We brought them inside and did crayon rubbings with them. It was fun (maybe more for me than them)! I think Joe enjoyed it more than Bella. He's got such a creative mind and it's really cool to watch.

After our craft time, I put together a dinner for them out of leftovers and made myself a salad with deli turkey and swiss cheese. I just put the kids down and didn't have any energy left for them. Quick prayer and g'night.

No Wii today!

Headache
fatigue
eyes are tired
little anxious

Good Morning

2009-09-14T09:18:00.002-04:00

Kids are off to school, and I have the whole day to myself! It's such a relief to have quiet in this house. It was a tough night and morning, but it's ok now.

Lying in bed, I had the twitching on my left elbow/bicep area for only a little while, maybe a 1/2 hour. My toes were pins and needles, and a new thing happened. My lips and tongue, and kinda the whole bottom part of my mouth seemed numb and tingly. Not quite numb, but like when the lidocaine wears off at the dentist and that weird tingly feeling is there. That was present just before I fell asleep. I woke up without any numbness.

This morning I woke up with so much tiredness. I could have pulled the covers over my head and slept for hours. Dan wasn't waking right up, so I got out of bed and made it happen. I told him I would be the one to get the kids up and off to school, so I really want to follow through. If I have all day to do nothing, it's the least I can do. My head ached and I was so slow physically and mentally, but the kids got dressed, groomed, lunches made, and on the bus without too much trouble.

Going to Wii fit today at some point, will post how much I can do today and how I'm feeling after.

Headache (back of head)
Neck and back sore/stiff
Slow (physical and mental)
Exhausted
Body feels heavy

Yikes

2009-09-13T19:18:00.002-04:00

So, things went from bad to worse. Dan was cranky when he came home from the base. It sucks for him to have to give up a whole weekend every month and have to get up early and lose sleep. It sucks worse that he doesn't get a break from taking care of me! I really overdid it just now. My head is killing, my body is exhausted and hot. My muscles are all twitchy.

I appreciate him so much all the time, it makes it so difficult when he has a fit. I can't be mad at him, and I just pick up the slack. The kids both needed showers, so they don't go to school Monday smelly. It's really a basic fact to me. He doesn't seem to feel that way though. I said that I had learned to wait for what I want, but things like that I won't wait for. I did it myself. We don't have a tub, b/c our bathroom is under remodel, so they need to be washed in a shower. It's too tough for a 7 and 5 year old to do by themselves.

Wow! It feels so good to get that all off my chest- and thank goodness for spell check! I'm going to give Dan the rest of the night off and put the kids to bed in a little bit. He really is a great man and does so much most of the time. I guess he's allowed his tantrums just as I am. I really do understand when it happens. If the least of my worries is whining and sulking- I'm a lucky wife!

Headache
HOT!
twitchy
feeling weird and out of it
emotional
slight ringing in my ears

Yuck

2009-09-13T18:01:00.001-04:00

Just made dinner and I feel yucky.

My headache is pretty bad
Loud ringing in my ears/head
My head is tingling
I feel shaky and unsteady
My eyes feel funny
Feel anxious and overwhelmed
Want to cry

Today's Wii Fit

2009-09-13T14:30:00.003-04:00

I just finished my daily workout.... if you can even call it that! I was able to get through the first 8 Yoga poses. At the 5th one, my head started to feel more achy. I probably shouldn't have pushed it and stopped at the 5th, but I guess I'm a little narcissistic. I really want to look great in my Maid of Honor dress for my sister's wedding in less than 2 weeks!

I hate that I have gained so much weight while I've been sick. I used to be so active all the time, and now I am so limited! At work, I was always up and down from my desk and running all over the place. I even took walks on the nice days during lunch. How I used to envy those on disability who could just relax all day long! Even eating is different. I can't drive, so I can't shop. I can only cook sometimes. My wonderful husband will shop and cook, and does a fantastic job. Of course there are always limitations.

I have learned that when you are asking someone else to do something for you, you really have to accept how and when they do it. I'm still adjusting to this new way of life, but I think it has helped me become more easy-going than I had been before. "My way" doesn't really exist anymore. I have learned to show my gratitude by keeping my mouth shut.

I am so grateful to the merciful Lord for my amazing husband. After reading some of the posts on some message boards, I really have had my eyes opened. Dan is so supportive in every way. Sure, he's human and makes mistakes, but look at what he has to deal with!

My mother always said to me when I came to her with any marital problem, "You're no picnic, either!" She's right- I'm not.

found great message board

2009-09-13T12:06:00.005-04:00

I found a great message board that seems to be completely dedicated to Post Concussion Syndrome! I have just submitted my first post on Neurotalk, and I am so happy to have found it! I really want to dedicate this blog to finding help for people like me who have wavered and searched for information on this crazy thing. It's tough to find any support, treatments, or hope!

I also just remembered a symptom worth mentioning. I only seem to lose the words I want to say while I'm on the phone or have already reached my limit. I think the phone conversation is a stressful scenario for me. I feel like I have to be "on" while talking to someone over the phone. Emailing or Facebooking is so much easier for me, because I can compose my thoughts and fix any silly mistakes that the PCS gives me.

I can't wait to see if I can find a place in this new community! The little improvements to my poor quality of life are so exciting!

Symptoms Right Now:
I have "pins and needles" in the toes on both feet
Neck tightness/pain/cramping
Headache in the back of my head (getting worse- thinking about a Treximet)
Light nausea
Unsteadiness
Slow thinking
Fatigue, but can't sleep b/c of Nuvigil
My eyesight is doing that weird slow motion thing.

Day 2 of message boards

2009-09-13T10:25:00.002-04:00

I was urgent yesterday about getting my story out. It felt so good to get it all out of my body and launched into a vast network that anyone could read. After I was finished posting everything, I felt a tremendous amount of sadness and despair. I have no idea why I felt this way. I just wanted to cry. I don't know if it was because of my symptoms or if it was because I had made myself vulnerable.

I felt better this morning when I had been replied to. People actually cared about what I had to say. I was amazed that strangers would take the time to welcome me into a group of people that share similar hardships. WebMD has a solid group of posters in some of their message boards. All the venting and angst that I felt yesterday was replaced by satisfaction.

Although I am satisfied with the responses and postings of other people, I feel a little addicted. I want to read everyone's posts and have everyone read mine. After 1 day of posting, I feel like I have a group of people I can be accepted into.

I think with my limitations and lack of prognosis, essentially having no end in sight, I need to have something to look forward to. I need to have some sort of pro-activity in order to feel like I am accomplishing something and fighting what is limiting my mind and body.

I have to get my Wii workout in at some point today. That is encouraging me and making me feel like I am fighting this thing. I have the kids by myself today, as Dan is at the Air Base. Bella, my 5 year, old is playing Wii Fit right now and challenging my times and records. It's great to see her trying to be fit and active. Joey, age 7, vegged in his bed playing his DS and is now vegging even more on the computer.

Nap time will come soon, I think....

Happy Sunday

2009-09-13T06:57:00.003-04:00

Good morning! I'm up way to early!

Went to bed around 10:30 last night, but had some trouble staying asleep. I woke up at 11:00 feeling like someone was squeezing my left arm right above my elbow. It was twitching intermittently, and didn't stop until around 1:30. I fell asleep feeling numbness in both my arms and legs. I woke up around 5 not feeling numbness or twitching or squeezing, but I couldn't get back to sleep. I had a stuffy nose and my mind wouldn't shut off.

So... here I am, watching DVR at 7am.

I think I'll try the Nuvigil again today and see how it works. I'm not sure if the sleeping will regulate or not- here's hoping!

Dan is at the base today, so no church for us. I hate to miss it, but i'm so proud that he's working so hard for our family and for our country. I'm so blessed to have every day and I will try to keep faith, hope, and love at all times. During the night, i was singing Tenth Avenue North's "By Your Side" to myself and it really comforted me. "my hands are holding you"

Love you Lord!

G'Night

2009-09-12T22:11:00.003-04:00

Off to bed now.... it's been an ok day. I'm not sure about the Nuvigil yet. I felt awake all day, but also kind of out of it. It was a weird feeling and I can't really describe it. We had a great dinner. My thoughtful husband picked up a rotisserie chicken and we had that with salad and veggies. It was exactly what I wanted. I had a craving to binge on junk food at about 8:00pm, but i was good and only had a chocolate chip cookie bar and a half bag of popcorn. I took an Amitriptyline for bedtime. I'm worried that I might not sleep tonight. I guess we'll see.

I think i might be a little obsessed with this blogging, but it's good to get out all my junk here and spare my family and friends from my whining!

Tomorrow it's just me and the kiddies. My father in law might take the kids to the park tomorrow to give me and them a break. Please!

Goodnight!

2009-09-12T16:24:00.007-04:00

now it's my right toes feeling the pins and needles. it started at 4:00, and i can feel it at rest and while i'm using it. no responses yet from anyone in any of the message boards. what's a girl gotta do to get some support? trying not to become my limitations. wii workout was good- did 5 yoga poses and one of the balance games.

here are some links i found: http://www.findingdulcinea.com/news/health/September-October-08/Little-Known-Syndrome-Afflicts-Many-After-a-Concussion-.html

"Traditional neurological and radiologic procedures, such as CT, MRI, and EEG, although helpful in identifying more serious concerns (e.g. skull fracture, hematoma, contusion), are not useful in identifying the effects of concussion. Such tests are typically unremarkable or normal, even in athletes sustaining a severe concussion. The reason for this issue is that concussion is a metabolic rather than structural injury. Thus, structural neuroimaging techniques are insensitive to the effects of concussion."
http://www.impacttest.com/impactbackground.php

Trying to communicate

2009-09-12T14:54:00.003-04:00

I'm trying to find a message board to talk with people about what i'm going through. I'm working on the WebMD message boards right now. I hope that I can find people who can relate. It's really tough not having anyone to talk to.

I think i'll try to zone out for a little bit and watch some tv.

Feeling funny from the Nuvigil. Best way to describe what my eyes are doing: trippy? like things are moving slower than they should? i don't know- LOL!

Think i'll do my Wii Fit for the day.... let's go yoga, let's go.....

September 12, 2009

2009-09-12T12:49:00.000-04:00

I woke up at 10:30 today. The kids and my husband are gone for the day. Dan is at the base for drill weekend, and Joey and Bella are with my in laws for a walk-a-thon. It's nice to have peace. My head hurt when i woke up and i didn't feel as if i had slept. I took a Nuvigil for the first time today. I am nervous about how it will make me feel. I don't feel refreshed or good, but i don't feel like i could sleep all day.

My right toes have had pins and needles feelings for the last few days. I think it started on Monday and it continues today. I don't always notice it, but i feel it when i put pressure on those toes. Also today i have noticed that my left knee twitches intermittently. When i sit for long periods of time, my lower back goes numb. I felt numbness in my upper left leg today too.

I have a dull ache in my head and i feel a little jittery so far. This might be from the Nuvigil. My vision is weird, but i don't know how to describe it other than weird. It's not blurry or double vision, but it is just different.

Maybe it's vain of me to say, but i hope this Nuvigil helps me lose some weight. I have gained about 15 lbs since my head injury and cannot work out for a long enough period of time to take any of it off.

My husband and i saw an article that showed improvement in post concussion cases with light excersize for limited amounts of time. I am trying Wii Fit yoga for a few minutes a day to see if it helps.

June 6-September 12, 2009

2009-09-12T12:03:00.000-04:00

So.... I'm starting a blog, because i feel alone. 3 months ago, I was visiting my husband in MS while he was on active duty in the AF. We went out drinking, came back to our hotel, and went to bed. During the middle of the night, my husband found me unconscious and bleeding from the back of my head.

I pushed all my bad feelings aside and continued to have fun for the weekend. I felt tired, nauseous, dizzy, and had a horrible headache. I didn't want to ruin the weekend, so i pretended i was fine. The flight back to NY was awful. My head felt like it was going to explode.

I wanted to go to work the next day, but i had such a hard time waking up and felt so horrible that i went to my dr instead. She examined me, did an xray and a CT, and concluded that i had a concussion, but there was no other damage.

I decided to go to work the next day even though i felt awful. The headache, nausea, unsteadiness, and exhaustion wouldn't cease. Halfway through the day a started vomiting and could barely focus on anything. I drove home and called my doctor.

She referred me to a neurologist, who was able to see me immediately. He prescribed me a sleeping pill to help out at night, and a few migraine samples to fight the migraines. He said if the symptoms didn't improve, he would send me for an MRI. 2 weeks later I saw him again. No improvement. I was tired all day, headaches, nausea, and dizziness. All of those symptoms would get worse if i did anything. He ordered an MRI that i would have to wait a week for.

I went to get the MRI, and saw the neurologist a few days later. The MRI was negative. I wasn't anxious to have something, but something was better than the unknown in my head! I wanted to scream. I didn't understand how i could feel legitimate symptoms if there was nothing wrong with me that would be picked up on any test.

I had some blood drawn by my MD and she also ordered an xray of my neck, because i also have tightness and cramping in my neck. The xray was negative, and the blood test showed a vitamin D deficiency which could be fixed with some prescription vitamin D pills. No big deal. She also said that we should repeat the test because there must have been a mistake in my billirubin levels.

I saw the neurologist every 2 weeks and continued to stay home from work. My husband came home from MS, and life became both easier and harder at the same time. I wanted to be with him and go out with him and enjoy the life i always have, but i was so limited! My head hurt and i was so tired all the time. There was very little i could do before i would go into overload.

My husband came to the neurologist with me and began to understand that what was going on was real. He didn't really get it until then. Every 2 weeks my neurologist would switch up my meds trying different things for my symptoms, but always saying that nothing was going to heal the concussion, just help my symptoms. Nothing helped my symptoms either.

The Treximet works for my migraines, but makes me feel like i'm having a heart attack. I've gotten used to feeling like i'm having a heart attack.

Four days before my 29th birthday, on July 25th, my left leg was numb. Not exactly numb- heavy, i couldn't use it. My leg would buckle when i tried to walk. I didn't think it was that big a deal. Maybe it was a side effect from the meds i was on. It felt like someone was squeezing my leg or something- heavy with a lot of pressure, tingling, weird. I couldn't describe it. I went to bed thinking it would go away.

I woke up in the morning with total craziness. I still couldn't move my leg, and it was worse. My arm started feeling heavy and tingly. I was also feeling very unfocused and confused. I called my MD and she said "Get to Gates". She thought i was having a stroke.

I got to the hospital, and they started all types of tests. MRI, CT, CT with contrast. Nothing was showing anything. They were all confused. They didn't have any beds, so i was turfed to the "observation room". My husband left to take care of the kids and get some sleep.

In the middle of the night, i began having trouble breathing. It wasn't that i couldn't take a breath. I just had to make my self breathe. It wasn't happening automatically like it normally does. I had to physically take breaths in and out. I was making my self breathe all through the night. No one understood what i was saying and i was becoming very tired from it.

I had a chest xray and it was negative. I began to become very distressed because it was so hard to keep myself breathing. I was so tired, but if i fell asleep i would stop breathing. Every time i fell asleep, my husband would wake me up, because my monitors would show that i wasn't breathing.

The doctors didn't really get what was going on until they saw me fall asleep, and let me stay asleep without waking me up. I didn't start breathing on my own when i fell asleep and my O-sats dropped into the 40s. When they finally woke me, I began speaking in gibberish. I couldn't say what i wanted to say. It was so scary.

They did a blood gas- ouch (an understatement) and it was negative. They finally began to see what was going on. It wasn't a breathing problem, but what was it. They put me in the ICU for monitoring and the condition did not improve.

I was taken for an EEG, which was negative, but during that time, i felt new symptoms on my right side. My right wrist felt like someone was bending it back. I wanted to sleep so badly but was being forced to stay awake because i had to be taken off the monitors for the test.

That night, the new nurse wanted to turf me to the telometry floor. She was trying to get me out of the ICU and into a room. There were several episodes of me falling asleep and waking up speeking giberish. It happened 4 times, and was scary every time.

Several times that day my husband and I felt as if we needed to say goodbye to each other. We prayed, held hands, and just cried. The night nurse finally moved me out of the ICU, against the attendings orders and put me onto the telometry floor. My night nurse looked like Florence Nightengale. She must have been in her late 60s and would not have been able to do anything for me in an emergency. She was smart and experienced, but slow and frail. My husband stayed the night.

The night went without episode, but also without sleep. I couldn't let myself fall asleep because i was scared that i wouldn't wake up. I didn't feel as if i was in good hands. The following morning, i was greeted by a new nurse and a new situation. I still couldn't breathe on my own and my leg was still numb. My arm was not too bad, but i was worried more about other things.

My billirubin levels were 8.7, which is more than halfway to dangerous. The attending was very upset that i was taken out of the ICU, but was conceeding that it would be ok. Every specialist in the hospital saw me, and no answers were given. I was vomiting and nauseous and felt a tremendous amount of pressure in my digestive system. I was feeling hungry, but eating made me sick. I was turning yellow in my eyes and my skin.

I was put on a saline IV and in several hours, things began to change. I was able to sleep for longer periods without losing oxygen in my blood. I would wake up only every 10-15 minutes instead of every minute. I was getting a few minutes of sleep here and there and was beginning to feel more confident. That night, i was able to sleep for even longer stretches of time. 30 minutes at the longest, but it was fantastic!

When i woke up in the morning, i was able to move my leg more. I had much more strength and mobility and was feeling better. I was taken for an ultrasound on my belly and an xray of my hip, because that was the only spot that still felt weird on my leg. My breathing was almost all the way better.

All the tests came out negative, all the specialists signed off on me, and the following day, i was released. The attending wanted me to follow up with someone to check out my billirubin issue and my MD and my neurologist. He didn't want me to leave without figuring out what happened, but there was no medical reason to keep me any longer.

I saw my neurologist again, and he didn't have any explanation either for what had happened. I didn't follow up with my MD until she could see me about 3 weeks later.

She said there was a disease called Gilbert's disease that causes your liver to not process billirubin well, so that the indirect billirubin will always be high. Stressful situations will cause the liver to function worse, and the indirect billirubin will rise very high. It isn't dangerous and can be lived with easily.

As far as my numbness and breathing was concerned, she seemed to think that it was the initial onset of MS. She said that legions wouldn't show up on the brain initially, and that my spine would have to be tested to show any signs of that. There was never any testing on my spine or mention of MS while i was in the hospital. She said that there would be no way to make a diagnosis unless i had another set of symptoms or some sort of consistency.

Since the hospital, i have had some instances of weird feelings in my body: tingling, pins and needles, numbness, heaviness. It hasn't been anything like what it was in the hospital, but scary anyway. I may be overthinking things or looking for symptoms.

I continue to see my neurologist regularly and will have more bloodwork done to ck my billirubin levels. I am blogging daily to try and record how i feel every day.

Maybe i will see a pattern? Maybe i can feel better by getting this all off my chest?