Thursday, December 24, 2009
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.
Monday, December 14, 2009
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!
Wednesday, December 9, 2009
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!!
Monday, December 7, 2009
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.
Tuesday, September 15, 2009
Monday, September 14, 2009
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!
eyes are tired
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)
Body feels heavy
Sunday, September 13, 2009
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!
feeling weird and out of it
slight ringing in my ears
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.
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
Headache in the back of my head (getting worse- thinking about a Treximet)
Fatigue, but can't sleep b/c of Nuvigil
My eyesight is doing that weird slow motion thing.
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....
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!
Saturday, September 12, 2009
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!
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."
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.....
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.
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?