Friday, July 24, 2015

Aches and Pains and Prickly Things

I haven't written a whole lot in the last 2 months and since I share so much with all of you, I think it is only fair that I share this. I have written before about the suck that is autoimmune diseases. Just about everyone on my mom's side of the family has some kind of autoimmune disease, so I come by it honestly.  We have Multiple Sclerosis, Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Osteoarthritis, Rheumatoid Arthritis and Crohn's Disease.  There are probably a few others that I am missing, but you get the point.  Any doctor who wants to study the hereditary link of autoimmune disease should really study my family.

I deal with muscle and joint pain on a daily basis. On a scale of 1 to 10, with 10 being excruciating pain and 1 being no pain, I have gotten used to living with a pain level of anywhere between a 6 and an 8 on a daily basis.  My rheumatologist has told me that it is caused by Inflammatory Arthritis, which means my muscles and joint swell causing a lot of pain.  She has also told me that she has no idea what to do for me since my body doesn't tolerate the immune suppressant drugs that are used to treat autoimmune diseases.  This would be frustrating if my rheumatologist actually listened to me when I told her about the things that have been happening to my body over the last year or so.  The fact that she has not listened to me and I am only getting worse is infuriating.  I have become so photosensitive that even  a little bit of sunlight causes my whole body to feel horrible prickly and all I can do it cry until medication helps the pain ease. I joke and say, "I live like a vampire," but it is really getting to me.  I look forward to cloudy, rainy or even down right stormy days so I can actually go outside without wearing a huge hat, big sunglasses, long sleeves, long pants and gloves.  On "bad" weather days I can get away with going out with just a hat, long sleeves, long pants and sunglasses. The worst part of this summer has been that I was unable to go out for a long period of time and photograph the daylilies that I look forward to each year.  I was able to run out during a rain shower and get a few, but nothing like I am normally able to do.

I have had suspicions that I am not dealing with Inflammatory Arthritis for quite sometime now.  UV light or a flare up leaves me with a "butterfly rash" on my face.  I am exhausted.  My whole body hurts. My blood work is all over the place, with my Sed Rate, which shows the inflammation in the body and should normally be between 0 and 31, registering most recently at 81. The most scary part for me has been my memory is total shit during a flare up.  Normally I have a steel trap for a memory, but during this flare that seems to be never ending, my memory is  more like trying to hold a gallon of water in a jug with a bunch of holes punched in the bottom.  It is terrifying. Today, I was in the grocery store with my mom I went in one aisle while she was in another and I looked around and couldn't remember what I was looking for.  Then in another section of the store my brain felt so fuzzy that I couldn't figure out what was going on.  I MUST say that my mom has continued to be my rock, especially since she knows what I am going through with this. She has been living it for a while now. Basically what my Primary Care Physician thinks is that I have Lupus.  I go next week to a new rheumatologist for a second opinion. I'm nervous, scared, worried and, in a strange way, hopeful.

Now, as if this wasn't enough, I am dealing with another breast infection...you know that thing that WASN'T supposed to happen again after my surgery (See Surgery and Stitches and Bandages...Oh My!).  There is inflammation in a new duct in my right breast.  There is no fluid collection at this point, which is good, the inflammation is a sign of infection.  I am on heavy duty antibiotics for 10 days and then I go back to the surgeon for a new ultrasound to see if the antibiotics have done their job and prevented fluid from collecting.  FINGERS CROSSED!

At the end of the day, right now I feel like garbage, but I am doing everything I can to remain sane, keep a sense of humor and do things to keep my brain going.  So I am asking everyone who reads this to please send in, via the comments section, any games or activities you do to keep your brain sharp. I need all of the help I can get!

Namaste