Clarity in the Storm

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

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.... ;-)

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

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

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

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

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....

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

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

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

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

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...

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

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?

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

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

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...

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.