Thursday, September 30, 2010

TBI Troubles

We are just about to reach the 27th month of my husband's care since he was wounded. It's been a long road and certainly stressful at times, but more recently it's the lack of being able to plan for anything that I'm finding the most difficult - for me anyway. I like to have some control of my situation and be able to have a plan and obviously that is something that doesn't mesh well with military life. I've also learned to let a lot of things go that are out of my control and in turn that seems to ease some of my stress and frustration a little.

It doesn't always work that way though.

One thing that really bothers me is when you do everything that you can and someone else drops the ball. I have an example as recent as yesterday when my husband went for his quarterly visit to the pain clinic. He has degenerative disc disease and a disorder of his tailbone so naturally sitting and standing for long periods of time are really painful for him. He was saying that it's getting hard to stand in formation even for a few minutes but that he's refusing to complain because there are amputees who stand there with him and if they can do it, then he's determined to do the same.

At the appointment, they gave him a shot of cortisone in his back again to help temporarily ease the pain. Mind you, they don't always work. Normally they call in a prescription for pain medication but this time the doctor forgot. He realized before the appointment was up and tried calling it in to the pharmacy but couldn't get ahold of anyone and now my husband is left being the one to jump through hoops to try and get the medication that he needs. That left him not being able to sleep for much of last night and just being in a lot more pain than usual. I felt bad for him because he's not one to want to take any kind of medication unless he absolutely needs it and now that he needed it, he didn't have any to take. I hope it gets straightened out soon for him.

Something that has really been a thorn in my side throughout the two and a half year process of recovery, has been getting a diagnosis of TBI. From day one, I have felt that my husband suffered a mild TBI from the IED blast. I have a picture of the giant crater that the IED left under their vehicle which was not light by any means. I think at least 10 of the surgeries he had were to dig shrapnal out of his wounds and he has several scars all over from where it pierced him. His paperwork even says he suffered a concussion but by the time he got from Bagram, Landstuhl, WRAMC, to BAMC, not much was said or done about TBI. In fact I've felt for a long time that they just glazed over it and didn't take his symptoms seriously. I've mentioned that on several occasions but some of his doctors have just said that it's just part of his PTSD or related to something else going on.

My husband has since admitted that early on he withheld information about what was going on with him because he didn't want to be labeled as being crazy or raise enough red flags that he should be admitted for psych evaluation. One thing that I've stressed to him that I was reminded of again over the weekend, was that everything he does is a normal reaction to an abnormal situation. Most people don't go to war at all or sustain traumatic injuries. I think he thought that by confessing that he was having some of the TBI symptoms that he felt like something was wrong with him, like he was inadequate. I have to admit, I was happy that he was forthcoming early on about dealing with his PTSD that I didn't even push the issue with TBI until a few months later.

I don't remember if it was a doctor or a nurse who did a simple exam on him and within 5 minutes determined that he didn't have a TBI. What some people don't realize is that some of the symptoms don't show up right away and sometimes they can take months to come to light. If the military does an MRI or CT scan and nothing shows up, in their eyes, that means it doesn't exist.

I started doing more research and realized that there definitely could be a link to the symptoms he has going on and TBI so I encouraged him to talk to his doctor about it more in depth. I went to a few of those appointments with him and explained what I had noticed and apparently it was enough to get him a referral to the TBI clinic at the VA. Normally at this point out, my husband goes to his appointments on his own, but if I tell him that I'd like to go with him or be his second set of eyes and ears, he's perfectly fine with it. There's a lot of stuff he doesn't remember or forgets to write down and he says it's nice to have me there to help him remember what to ask.

I happened to not go with him to the first TBI visit. The first thing they asked him was why are you here and why didn't BAMC take care of this for you? He said that BAMC kind of glossed over any desire to test him for TBI and that he doesn't schedule any of his appointments, his case manager schedules everything for him. They informed him that because BAMC didn't handle it that he might end up being billed for this appointment. Fortunately that didn't end up happening, but the lack of communication just really got under my skin. When it pertains to his injuries that were caused by enemy fire during his service to our country, he shouldn't be billed for anything. Unfortunately it happens more often than not.

While he was at his appointment he filled out a big long questionnaire about his symptoms, etc. Turns out he answered yes to about 80% of what they asked which did finally raise a red flag, or at least enough concern for them to warrant further in depth testing. Hard to believe a 5 minute once over didn't suffice isn't it? I am just glad that things are being taken seriously. I don't want him to have a TBI but if he does I definitely want it to be addressed and to be addressed prior to his medical discharged. If there's anything that can be done while he is still active duty, versus fighting with the VA later on, you'd better believe we're doing just that.

He has another appointment at the TBI clinic tomorrow so hopefully it goes well. I would like to be present for this one but it was scheduled right around the time that our daughter gets out of school and is way across town so I'm not going to be able to be there. In the meantime I've made a list of his symptoms for him again and armed him with some info from my retreat this past weekend to show him what he needs to remember to mention.

I went with him last week to talk to his PCM as well as a legal representative from the SFAC (Soldier & Family Assistance Center) and mentioned to both about how I feel about getting a TBI diagnosis. In the meantime, his PEBLO (Physical Evaluation Board Liason Officer) has been pushing for him to sign his VA claim so they can get it submitted ASAP. Believe me, I would like nothing better than to push this process along, but I am determined that it will be done correctly the first time. I don't want him to have to appeal and start the process over, I want to get this show on the road as much as the next person. Like I said, it's been almost 27 months. I personally would like to get off of this roller coaster. That being said, don't push him to sign something when he feels he needs to wait for the results of this TBI appointment and we have a chance to go over everything with a fine tooth comb with JAG next week. The legal rep from the SFAC told us that the attorney may request a hold to be put on the paperwork/PEB process pending the outcome of the TBI stuff. If that's what it takes, then I'm all for it. I just want things to be done right and to have him evaluated fairly. After all of the sacrifices that he's made, I don't think that's asking too much.

Tuesday, September 28, 2010

Letting It All Out

I'm hoping that by blogging again that I can just let out the things that are frustrating me and then let go of them since I don't have any control. I attended a retreat this past weekend for wives of wounded warriors (more about that in another blog) and learned how to cope with everything and not let it weigh me down so much. Well right now I need to just dump out that bucket of crap because it's threatening to spill over and this is the best way that I can find to do it.

This started out as a blog for my shop and then a blog about my husband's injuries but today's post is about me. I seem to have no shortage of ways to talk about myself. I never blogged about my surgery this past Spring because life picked right back up and moved on too quickly for me to slow down and write about everything. In a nutshell, I had a complete thyroidectomy for my Graves Disease and subsequently developed a hematoma and MRSA in my incision. During surgery I had a parathyroid gland that was stuck to my thyroid and damaged, leaving me with hypocalcemia and in and out of ICU. I figured why let my husband have all of the fun in the hospital, you know?

After surgery I was followed by my endocrinologist one time and given a 100 mcg dose of Synthroid. I spent the next 6 months trying to contact my doctor to be seen again because I started having a lot of problems from the dose that I was on but had no luck. I finally went to see my PCM out of frustration and he put in a new referral to force them to schedule an appointment with the endocrinology clinic. The earliest I could be seen was three months out and I still have another month to wait.

In the meantime, I have lost at least half of my hair, gained 25 pounds, developed intense muscle spasms, and my skin began to feel like an oil slick. Could I please feel any less attractive? I try to have a good body image but that sure makes it difficult. I finally got so tired of seeing clumps of hair at my feet in the shower and literally clogging the drain, that I went and had most of it cut off.

My PCM had labs drawn to check my thyroid hormone levels and he called me while I was sitting in the airport waiting to catch a flight home this weekend. Well it turns out that my Vitamin D levels are pretty low and it's most likely because my endocrinologist was too quick to pull me off of my Calcitriol that I was taking for the hypocalcemia. Of course he hasn't been following me post surgery progress so I would never have known if I hadn't scheduled a visit with my PCM. So now I'm on a dose of 50,000 units of Vitamin D for the next 12 weeks to bring it back up to a healthy level.

I have to say, I'm kind of angry about the whole thing. My husband gets excellent care and can barely breathe without someone scheduling an appointment for something. It is just so wrong for an endocrinologist to not follow up with their patient after surgery. I realize that he wanted me to have RAI instead of surgery, but let's remember that this is my body and therefore my choice for treatment. If we weren't looking at moving again soon, I would gather up my medical records and request a new endocrinologist from Tricare.

So frustration with that aside, I really hope that I can tolerate the weekly dose of Vitamin D and that I feel a lot better soon. I must be the only person in south Texas who has a problem from lack of sun. I need to start drinking milk on a regular basis again too and I am definitely not a big fan to say the least. Drinking a glass every day will probably pack on more weight but if the extra Vitamin D helps combat the muscle spasms, then maybe I will finally be able to work out again.

My biggest gripe lately is my skin. Because it got so oily feeling and with me having bad acne issues in my teens, I figured the best way to dry it up would be to use a facial scrub with a small amount of salicylic acid in it. Let me say right away, that that was a really bad idea. This was not acne. The salicylic acid actually burned my skin. It's red and extremely dry and feels like a wind or a sunburn. Even using my moisturizer is painful. Other than standing in the shower and letting the warm water run over my face, I leave it alone these days. Putting on makeup, even mineral makeup is so uncomfortable. I feel like my skin is just cracking and it's just raw. Hopefully I can bring things under control soon. It's certainly livable but just really annoying.

As frustrating as this health stuff has been, at least it all makes sense now. I thought all along that I needed my Synthroid dose adjusted and that might not even be the case now. There is still no excuse for my endocrinologist not doing anything, but at least I have a better understanding of what caused this and an option to treat it and feel better. I just hope it works!


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