Hope for the brain damaged

Disclaimer: This blog is a reflection of my own experiences, and how I deal with them. It is not my intention to insult anyone who has similar conditions, nor is it meant to underplay the significance of the impact on individuals suffering from brain disorders.

Sorry I have been silent lately. Life has quite simply gotten in the way. In the last few months I have been dealing with some health issues and life in general. Although I still have an unknown question hanging over my head where my health is concerned, I wanted to step away from my normal genealogy posts and talk about my recent experiences. I do this because many of the folks I know are older and have problems of their own, and also, because there is a chance that my experience may help someone else. I will be back to genealogy before you know it.

So, brain damaged? What do I mean by that? I have two conditions that have literally changed the way my brain works. When I say that my conditions are "all in my head" it is literally, and not in the way that we generally use the term. Fourteen years ago, I was diagnosed with a dysautonomic disorder called Postural Orthostatic Tachycardia Syndrome (POTS). Basically, the part of my brain that controls things like heart beat and blood pressure doesn't work right. So whenever I stand up, unlike someone with neurogenic syncope who passes out, my body increases the heart rate. Truth is I have had symptoms of POTS since I was 8 years old when I began having near syncope. By the time I was a teenager I had several of the other symptoms, and I really noticed the tachycardia last.

I am pretty high functioning for a patient with POTS. It is true that POTS patients have a hyperawareness of their body and symptoms. (Although I think it's sometimes a nice way for doctors to call us hypochondriacs).  In my case, I have used that to my advantage. I know my limits, and know when I can push them and when I can't. How I deal with my POTS has a lot to do with how I deal with the other condition which I have been labeled. So I will go into it a bit more later.

Last month my (relatively new to me) doctor told me I was too young to have problems with my knee, and sent me to an orthopedist, which led to physical therapy. When the therapist told me I had chronic pain, I first thought "I don't want to be one of THOSE patients". Only another nurse or health care provider will understand what that means. On reflection however, it's true. I do have chronic pain.

A car accident when I was 19 started this journey. An injured shoulder bothered me for years, until finally when I was 27 I went to my doctor and told him I don't care if you have to cut it off, I need to do something. An orthopedic visit and an injection later, and it stopped bothering me until a car accident 6 years ago. That time I had surgery in 2 1/2 weeks, because I literally could not deal with the pain.

In the meantime, a work injury in 1998 sent me to a chiropractor (not by choice). I walked away from that experience with a diagnosis of sacroileotitis, or an inflammation of the Sacro Iliac joint. I have lived with that pain ever since. Four years ago I broke my patella on my left leg, and after the fracture healed I continued to have pain in my leg. For me it was just another problem I had to live with. Doctors are pretty good at prescribing pills, but the anti-inflammatory drugs don't seem to help all that much, and although I do now have a pain prescription, I don't like to use it.

Although I robotically ask patients to rate their pain on a scale of 1-10, for me it's not that simple. I don't think of my pain in that way. For me, much like my POTS, there are four levels. I know it's there but it's not that bad, it's there but I am easily distracted from it, it's there but it's hard not to think about it, and I can't work because it's all I can think about. Ironically, how I function in my POTS is exactly the same way.

The suck it up buttercup mentality I have developed from childhood, was honed with the idea of mental toughness in the Marines, and after 18 years as a nurse, my ability to compartmentalize and ignore my symptoms or my pain has been perfected. Simply put, if I am busy enough, I usually put it on my mental shelf and ignore it. When I found out 14 months ago my vitamin D level was 11, I thought I had the answer. Although it's still not normal, it's close enough that I had thought this was as good as it gets. Because fixing that went a long way towards making me hurt less.

When the physical therapist explained to me that chronic pain actually changes the nervous system, I was a little shocked. I had no idea that it could do that. The brain, trying to protect the body, tenses everything up and is in a constant protective state. In these actions though, the brain is often causing the pain it's trying to protect from. The result is a constant cycle in which no day is ever pain free.

That's not to say it is all in my head. I have a pretty significant instability in my SI joint. What that means as far as what activity I am allowed to do for a long time shocked me. No impact, no tread mill for 6 months. No stretching or yoga for at least a year. I will also have to have some kind of maintenance exercises for I don't know how long.

I started this article with hope, and that's what I am about to talk about. My therapist told me that when I said my pain was  4-5 it was like an 8-9 for someone else. I can tell there is pain, but I have trouble saying if one area is worse than another. My brain is just too used to those impulses. Therapy is retraining my brain. I was asked a goal when I started therapy. It was simple, to face stairs without fear. I have literally avoided stairs for most of the last 4 years. It was 2 1/2 years before I could make it up a flight of stairs, and I can do that easily now most days, but going down. I am afraid I will fall. I simply do not have the strength and stability in  my knee.I am working on that.

Here is my hope. What I did not expect to get out of therapy. I wake up, and I don't hurt. I worked two 12 hour shifts as a nurse, and I didn't come home in pain like I usually do. In fact, I have had little pain in the last week, so little that for me it's almost the equivalent of none. I did not hope for that. I had such low expectations, I didn't think that could be my reality. Now it is.

My mother gets angry with me when I tell her she should try something because it works for me. She's right, just because it works for me doesn't mean it will work for everyone, but then she's also wrong. I am right when I preach about Vitamin D levels to people. After reading several dozen studies, it is an epidemic. And if you have chronic pain or disease, you aren't going outside and getting half body sun for at least 30 minutes without sunscreen, and unless you live along the Gulf Coast, Texas, Arizona, New Mexico or California, that only works in the summer. So if you have chronic pain, ask your doctor about your Vitamin D.

Therapy won't work for everyone and every condition, but the decompression exercises he has me doing, were designed for women with osteoporosis. Studies showed an 8-15 percent increase in bone density in 6 months. And a benefit is better posture. I literally had to adjust my rear view mirror in 2 days because my posture had improved. There are things that we all can do to make ourselves healthier.

 I thought I was doing so good, because I work full time, but the reality has been, I live to work. The rest of my week is about "resting" so I can go to work. That's not life, that's existing. Here is what I have learned in a relatively short time. At this point and time medical science can fix POTS about as well as you can fix stupid. It's just not on the horizon. That part of my reality won't change, but I do know now that pain isn't good. It's not always okay to "tough it out". We need to listen to our bodies. We don't need to stop what we are doing, but go slower, do it smaller. Just keep moving. And most of all, don't give up hope.