Life with Parkinson's Post #6- PD , A Complication

This morning my thoughts are on health issues I have other than PD (Parkinson's Disease). I started a new medication last night which I pray will help the nerve pain I suffer every day with. I've been taking narcotic pain meds for two years now and it's unpleasant to think of taking them forever, although they do help me function. This new medicine is not a narcotic but it takes the body a few weeks to adapt to it. So this morning I'm dizzy and very sleepy. I drove my 10 year old daughter to school; a little scary. There's no one else to take her.

Two years ago I injured a disc in my lower back; ruptured it. I had two surgeries to repair it. This year in January I had another surgery; a partial hysterectomy. This is opted to do because I endured nearly two years of constant bleeding; not fun. Also, last year for the entire year, I suffered daily migraines. These things were all complicated by PD. I'd go to the ER and the attending doctor would look at my history in disbelief. One said, "Lady, you've got a lot of problems." I said, "yes, I know." A few others tended to think I was in there just trying to get drugs; this was because of the frequency of my visits- 3-4 times a week. I am lucky to have survived it all. I was overdosed on pain meds by a nurse, and just on my own by taking the meds just as they were prescribed. I had many days when I just wanted to lay down and die. It was not my time to go. I have a sweet daughter, Ariana, who cares for me on my sicker days with such compassion for a 10 year old. I've been sick all of her life.

Medical professionals, other than my neurologist and GP really don't quite believe that I could have P. And...they don't really understand the disease. Each time I was in the hospital I had to fight them to give me the correct medication, to remind them again and again that my case is so different because my PD complicates and changes many of the 'usual' protocols. Most of them didn't understand at all and they probably never will. As I read on another blog today, unless you live something yourself it is very likely you cannot really, truly understand it.

The hysterectomy was successful in helping a lot of my aggravations. No more bleeding and pain from my diseased uterus. I also had a bladder repair which has helped me to function better also. I am just getting my 'pre-surgery' energy back. It's been 3 months. By 'energy', I mean something far different than what 'energy' means to someone without PD.

Now, medications.... I have done a lot of research on causes of my condition, tried many treatments, supplements, diets, and more medications. They have all been good and helped me in understanding my cellular structure and brain chemistry. Our bodies are so magnificent; they can really take a beating and still keep going. Last year I traveled to Pennsylvania and Idaho to see doctors and take part in clinical trial treatments. I no longer have migraines- Yahoooooooo!!
I have cut back on my P meds from 4 times a day to 3 times a day and sometimes less.

8 years ago, I was completely frozen on my left side, dragged my left foot. I couldn't tie my shoes or button a blouse. I couldn't cook anymore because I would cut and burn myself, I couldn't dance with my husband, I couldn't put my 2 year olds hair in a ponytail. I got into an auto accident because I blacked out. Now, in 2009, I don't have any visual symptoms to the untrained eye; that is after I have taken meds in the morning and as long as I don't have a virus or any other infection which changes the brain chemistry. I don't have the depression and mood swings anymore. My ambition is back, although I have found over and over again that I really cannot handle big projects like I used to. I love to organize and be in charge; PTA president, Volunteering, Teaching dance classes, putting on showcases, fashion shows, etc....... I have done most of these things in the last 8 years and I always crash after they are over and I'm down for weeks or months. I just got through making all the dresses for a wedding including the bride's. It was such an adventure but when they were done, I was sick.

You say, why do you do it then? Because it keeps me going mentally. I am learning slowly how to keep things simple yet fulfilling. It's not easy to a perfectionist, overachiever. PD changes everything I do and after 8 years I think I'm starting to understand this. I denied it for many years. I play the piano and I love to draw portraits (faces). I do it when I have the 'working hand' windows of opportunity. Very seldom do you see me cleaning toilets when my hands are working. That does nothing for my morale. Don't worry, they eventually get cleaned.

I think back on the past 8 years and shudder at how much I did, trudging along, sometimes falling into a pit for a while, then climbing out and finding my road again. My three oldest kids all went through high school with a PD mother. I tried to be involved anyway. It was tiring, sometimes an enormous load for me. But I knew these years with them would be gone all too soon and I was not about to let this stupid disease keep me from enjoying their teenage activities. They have all been very understanding and supportive for the most part. Now my two oldest daughters are married and tell me they really understand now what I must have endured. My adult son is also supportive and helpful, running errands for me and many other things. And my husband has been an amazing source of strength, enduring patience, and unconditional love. I am blessed.

PD is a complication of life like any other disease. But it doesn't have to be complicated. I have taken steps to eliminate any exposure to chemicals, including installing a shower filter because of the chlorine in our city's water, have worked hard on emotional healing (a lot to do there), and accepted the fact that this is my life, my only life, my only body. I make the best of it. Yes, some days I hate it and try to be angry but it doesn't do any good. I have family, great doctors, supportive friends, a home which is my haven. What more could I ask for? I have asked God to take away this disease and he said, "Not right now". So I live with it the best I can. Right now 9:00 am in the morning, I have full use of my fingers and hands and can type pretty fast. Later on today the slowness and stiffness will return until I take my scheduled meds. Some days I never have any down time. They are glorious days.

I am praying my body acclamates quickly to this new medicine and I can be free of the nerve pain and free of narcotics (which I am dependent on by the way). I stop taking them and within 12 hours I'm in withdrawals. So I hope this new method will work so I can get off the narcotics. It's hard taking so many medications, deciding when to take one so it does not interfere with the other. I get nauseous very easy and often vomit if I don't take the meds just the right way each morning. In spite of all this I am so thankful for these medicines. I would probably be dead without them.

I will probably sleep today, try to sew on a quilt I'm making for my mom, read my scriptures and ask God to help me today, clean my kitchen and my clutter spot in my bedroom. These things will take me all day. My daughter comes home from school at 3:30. Then we are going to make cookies and do homework and wait for dad to come home from work. We'll have an evening together that ends all too soon. I'm so thankful God has granted me one more day to be with my family and to function and find fulfillment. I really am living the dream......