Saturday, December 29, 2012

Curious new discovery

I'm back after several days away. I decided I was going to try to enjoy my Christmas holiday with my kids. It was a great Christmas and everyone is happy.
Right now, I am dealing with sores on the roof of my mouth near my sinus and up behind my front teeth. Very painful and hard to eat. I have to be super careful. I have not been taking my Plaquenil for a while now because I began seeing black objects fly before my field of vision. These black spots would scare the life out of me as if they were objects flying at me from my peripheral view and I would jump or flinch. I was also having headaches and blurred vision. Since I stopped the plaquenil, no more black spots and very few headaches. Vision is still a little blurred but nowhere as bad as it was. So yes, I do believe it was the pills. I even went to the Opthomologist not too long ago, who said they saw nothing wrong. Yet the pills stopped and so did the symptoms. I feel I did a wise thing by stopping the plaquenil.....we shall see how unwise my rheumy thinks it was when I see him next in early February.
I am still suffering ungodly acid reflux that subsides to nothing outside of TUMS. I'm supposed to have another endoscopy soon, but as of yet, have heard nothing about the referral.
I have what seems like inflamed organs. Some nights, when I lay down on my left side, the second my middle abdomen just below the ribcage touches the matress, I curl up in pain. It feels like something in there is big and swollen and gets pushed back up in my ribcage when I lay on it. It's excruciating at times. I  just lay there and cry myself to sleep. It happens with my right side too now. Not just when I lie down though. Forget about laying on my back. That is just no longer possible.
I am still awaiting approval of the medication for my muscle inflammation (Prior Auth.) Since it's not on the formulary. Meantime, my upper arms swell to make me look like a linebacker! They're painful to the touch too. Wierd thing is....I've had that pain long before the inflammation was evident. They called it Fibro. Now it's muscular inflammation. That goes to show...(They really don't know what they're dealing with either. We are all in this together. Learning and discovering something new all the time.) What is worrisome, is that I believe the inflammation in my muscles is causing my joints to dislocate and it's putting pressure on my spine. I hurt all the time lately. When I stand from a seated position, I look like an 80 year old woman. I cannot straighten for sometime. I have also developed what seems like panniculitis on my right hip and left upper arm. It is very painful and massage is amazing. Problem is that massage is unwise for me as I am on 11mg of warfarin and have started noticing bruising on my upper thighs. I will be going in for another PT INR in a day or so.
Last night, I was terrified because suddenly my chest had a crushing pain on the left side that took my breath away. I "at first" was not convinced it was a heart attack, merely a pulled muscle. So I changed positions and waited for it to go away. It only got worse. suddenly...my left arm went numb. Not cool! I began thinking "I'm way too young for a heart attack!" Until I remembered that I was the youngest person in the pulmonary ICU ward with my embolism last June. I continued to change position until feeling came back to my arm and the pain subsided. I guess I just wanted to believe that it was nerve issues, as I've had so many times before. Better than a heart attack! I still don't know what happened...not sure I want to.
Where I used to have the malar rash on my face lightly on occasion, it now seems to be more evident more frequently. Not only my face, but my chest as well. AND please feel free to tell me if you have a clue as to why.....my face has been so itchy, I could tear it off at the neck. Every day! I wake up and my whole jaw line is itching like crazy! I've walked around my house with a Calamine "painted on" beard. I take a Benadryl in the morning and it doesn't help! Now I'm trying a new product (ointment) called TriCalm. It worked the first day, but never since. It's becoming hopeless. Now, for the new discovery. I got a Sharper Image Super Wave Oven for Christmas and wanted to use it for dinner tonight. I set it up and put the food in it. It's a large glass bowl with a lid on it that holds a high powered fluorescent light source and heated waves to cook the food. I put my face up to the glass to look at the food (which totally did not seem dangerous in any way) and immediately, I had an inflammatory response My face started to get hot and swell as did my chest (areas of exposure) and it was immediate!
Wow! So then, I look around my apartment and realize that the lighting in my kitchen, and both bathrooms is fluorescent! Could this be the reason for my chronic inflammation at home? What a find!! I think I may be on to something here! Skin cancer may not be the only thing to worry about with regards to UV exposure! So, I have a new approach to go to my doctor with on my next visit. Now, how to change the lighting in my home because it's making me sick. That is not going to be an easy feat with my property management group. They HATE to be accomodating! I may just have to buy lamps :( 
It's late now, so I'm off to bed. Here's to hoping tomorrow is a good day. Good night all.
Muscle Inflammation
Mouth sores
 
Gentle Hugs ~ Heidi

1 comment:

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