Sharing my story

Hi everybody. I want to tell you a little about my story. This could get long because it is something that has been occurring for the last 7 years. I've told people before about my brain injury. That happened in 2008 when I fell off my bicycle and hit my head on the pavement. I was wearing a helmet and I know it saved my life.

Despite the protection, I still managed to split my head open and I remember the sound my head made when it hit the pavement. That's the last thing I clearly remember until about an hour or so later when I was in the hospital getting stitched up and I don't remember the next few days until about a week later when we were in Vegas on a vacation we had been planning to take for a year. I remember little bits here and there in between but for the most part, it's lost.

After the accident, I began discovering problems with numbers and with finding words. Strange things happened -- like one time I was knitting and I had to count the stitches on my needle. Except I couldn't remember how to count. I had no idea. Suddenly the stitches grouped themselves together into sevens and I counted them by sevens. I was never great in math and the multiplying 7s and 8s were the hardest for me. So to suddenly be able to count by sevens freaked me out!

Now we'll fast forward a few years to about 4 years ago. I was CTing a lot and designing a little then, taking some designing courses online and selling in a little shop, making a few dollars. It was so exciting! I wasn't able to work outside the home anymore due to some painful things that were beginning to pop up. I always explained it away because most of them could be attributed to actual injuries like a torn MCL in my knee, sprained ankle and broken foot. I had my gall bladder removed. But there were other things too. Unexplained swelling and aches and pains. I saw my Dr about that for the first time. He tested me for thyroid problems and a bunch of other things they test for first. Everything came back normal. My Dr told me "Unfortunately, some women your age just 'get lucky' and develop things like oedema for no reason". I accepted that. After all, I was beginning peri-menopause and I had no idea what to be expecting. I googled peri-menopause. Lots of my symptoms appeared. Well, my doctor must be right.

In the interest of saving time, I'm going to just say that in the next couple of years I decided to go into designing full time. I found a few shops to sell in and was making some nice pocket money and I loved being able to create things and seeing other people use them. Things were going great, except... the brain fog was getting worse. I was having so much trouble concentrating. I couldn't think clearly enough to organize things in my head -- things most people can do like remember a couple of numbers immediately after being told them (you know, "Hey remember 214 for me for a minute while I do something else. Ok, what was that number I asked you to remember?" "Shoot. I don't know." I started doing strange things like typing the word fork when I really meant to type the word fire. I explained it all away. Must have something to do with that bicycle accident. The oedema was getting worse. The pain in my joints was getting worse. I started needing naps - not wanting a nap; needing a nap. I started to get frustrated and I went back to my doctor. Once again he did blood tests, but he did the same ones. The ones you get done at an annual physical. Once again, everything came back normal. And once again I was told "Women your age..."

More weird things happened. I noticed my face has begun to get a flushed look across my cheeks and nose. I started to get strange rashes and there was no explanation for them. No I didn't start using a different laundry detergent, no I didn't start using different shower gel or shampoo, no I didn't touch anything that would irritate your skin.

I started noticing that when I was typing my hands would shake. Then one day I was holding a glass of water and my hand was shaking so badly that the water spilled out. Back to my doctor! He diagnosed me with Essential Tremor. Nobody knows what it is, but it is more common than Parkinsons Disease. It's a neurological problem that affects you when you are actively doing something - like holding a glass of water or pressing and holding the shift key on your keyboard. I was given a prescription for propranolol and it stopped the shaking problem. But my body didn't like taking propranolol. I gained 70 pounds in a little over a year. During that year, I asked my doctor to get weaned off of propranolol 3 times because I was gaining weight. He told me that the propranolol was not likely causing the weight gain, because you know... "a woman my age" can find herself gaining weight. Finally, I just quit taking it. And guess what? I haven't gained a pound since. But now I have the pleasure of trying to lose those 70 pounds. And you know what? A woman my age has trouble losing weight. LOL

I started having a very hard time keeping track of deadlines for my stores and there were many contractual obligations like hosting speed scraps and monthly challenges that I was finding to be overwhelming. I couldn't keep up. Instead of loving to design, I was finding that it was no longer enjoyable. My health was taking a toll on my designing, which stressed me out, which affected my health more. I made the very difficult decision to leave designing and concentrate on getting better. I've taken up making mini scrapbooks and painting. My goal is to start selling them when I feel better. Until then, I'm getting quite a nice little inventory started. :)

Unfortunately, I'm not getting better, it's actually getting worse. I've started noticing that some foods will send me running to the bathroom almost immediately after eating them. Dairy products and onions seem to be the biggest offenders. The rashes come and go. My skin gets scaly on one leg and gets very itchy. I have Restless Leg Syndrome so bad that it goes into my arms and neck too and I take medication for it so I can sleep. When I wake up every morning I have what I call a "mini seizure". I can't stop it from happening - my body just goes rigid and everything shakes, including my eyes. It lasts about the length of time that it would take to yawn and then it is over and done with until tomorrow. My arms and legs feel like they lose circulation and I get pins and needles or just outright pain in them. My knees, elbows, ankles and fingers ache all the time. Sometimes my knees ache so badly that the skin feels like it's on fire and I have to put ice packs on them. The sides of my feet hurt, as if I'm being stung by a swarm of wasps. The only time I don't hurt is once I'm finally asleep.

I finally marched myself into my doctor and told him that he needed to find an answer to this because I know many "women my age" and not one of them has problems like this. I handed him a page full of symptoms and he had a look at it and raised his eyebrows. It was like he finally heard what I'd been complaining about for the past 4 years. He arranged for more blood work, but this time, he was looking for less common problems like Lyme Disease and even HIV. Those tests all came back negative. He arranged for me to see an Internal Medicine specialist.

I am now waiting for my follow up appointment with the Internist to get the results of the blood work that he ordered, plus I have an appointment with a Rheumatologist. The Internist is checking for Lupus, Diabetes 2 and Crohns/Colitis. The Rheumatologist appointment is for Lupus and Fibromyalgia. Once again, I turned to google. I know better than to self-diagnose, but let's just say I won't be surprised if the Rheumatologist diagnoses me with both Lupus and Fibro.

On top of all that, I'm dealing with the injuries from the motorcycle accident on July 1st that I told you about a couple blog posts ago. I attend physiotherapy twice a week and I am making progress. I have got a little use back in my leg. I've always been able to walk, albeit slowly and painfully, but I can't do things like lift my leg high enough to put on socks or shoes. I still use the walker, partly because I need the support but mostly because I can't walk far and need to sit down frequently. Stairs are very difficult and I avoid them as much as possible. Fortunately for me, this was a motor vehicle injury and our insurance has been pretty good to me. They bought me a raised toilet seat, a grab bar for the shower, and today I'm supposed to be getting a yoga ball to sit at my desk and for some of my physio exercises. They have leased the walker and a bench for me to sit on in the shower. They are paying for a housecleaning service to come in and do the things I can't do like clean the bathtub and vacuum and even make my bed.

I feel very fortunate that they are doing all this for me because between the accident and the other health issues, I just can't do it alone anymore. I am trying to stay positive. There is a lot of stress in my life right now but there's no point in worrying about it until I get the diagnoses. Somebody once said "Worrying is like a rocking chair. It gives you something to do, but you don't get anywhere doing it".  And that's so true.

I try to find humour in little things. I've started calling Whatever-Is-Wrong-With-Me, "Eunice". Eunice is quicker to say and WAY easier to type than Whatever-Is-Wrong-With-Me! My apologies to anybody who is named Eunice. ;) I chose that name because of the Carol Burnett character Eunice in some of her skits. Her Eunice isn't nice, and neither is mine. LOL

I was raised to be very independent but I'm finding out that it's ok to ask for help. I'm overwhelmed by the prospect of what life will be like after Eunice finally gets a real name. I would like to show you one of my paintings. A couple of days ago, at 2:00 in the morning when I couldn't sleep due to the pain, I painted what Eunice feels like to me. I found inspiration in a painting of a woman in a similar pose, but I put my own spin on it. This is not painted in my usual style because I usually paint only landscapes.  My perfectionist side hates painting muscles and bone structure.  Plus... she's green.  I find lots of ways to criticize this painting, but everybody I've shown it to tells me that I accomplished what I set out to do, which was painting what being overwhelmed by chronic pain is like.  My physiotherapist wants to hang this painting in the clinic.

Our dream of retirement may be affected by this diagnosis also.  That's another post for another time, but we had been hoping to retire in five years to someplace where it's warm year-round.  We will be young enough that we could live somewhere warm and enjoy it like a permanent vacation.  Perhaps Costa Rica or Panama.  But it may not be feasible to leave Canada if my needs mandate staying here for the healthcare we have here.

I hope that one day I will be able to return to designing.  But whether or not that will happen is anybody's guess at this point.  At the very least I hope to one day be able to sell my mini albums and paintings.   I'll blog about them another day.  Right now, I've tired myself out and it's time to say thanks for reading this!

~Dawna