Saturday, December 18, 2010

Social Security Disability, Student Loan Discharge

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?

Monday, December 13, 2010

Progress... what's that?

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.

Wednesday, December 1, 2010


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.

Thursday, November 25, 2010


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.



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.

Monday, November 15, 2010


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.

Friday, November 5, 2010


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 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.

Monday, November 1, 2010

Research Articles

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.

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

Monday, October 25, 2010

Concussion Clinic Appointment Today

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.

Wednesday, October 20, 2010

Update 10-20-10 / Sobakawa Pillow

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.

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?

Thursday, October 14, 2010

One migraine can't get me down

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.

Monday, October 4, 2010

Update Monday

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.

Monday, September 27, 2010

Concussion Update 9-27-10

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.

Thursday, September 23, 2010

Amitriptyline Withdrawal - UPDATES day 7-day 32

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.... :-(

Monday, September 20, 2010

Amitriptyline (Elavil) Withdrawal

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.

Saturday, September 11, 2010

Pure joy

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.

Thursday, September 2, 2010

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

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.

Monday, August 30, 2010


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

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

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.

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

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

Wednesday, February 3, 2010


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.

Friday, January 15, 2010


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........

Thursday, January 14, 2010


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.

Thursday, January 7, 2010

Good appt today!

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:

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!

Tuesday, January 5, 2010

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

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!

Sunday, January 3, 2010

The step after acceptance?

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....