Wednesday, August 17, 2011

Lupus and the kindness of strangers

The diagnosis

I'm glad I had someone with me when I finally saw the rheumatologist again yesterday after my unexpected absence this last 10 months.

I've had so many diagnoses in the last eight years, and we just discussed the insomnia I "woke up to" as a serious symptom for anyone, but most especially a bi-polar who has 24 hour drive-thru brain activity.

Dr. Kim had taken a whole slew of blood tests, but I had been side tracked with other more urgent issues, and when I did not return, I had no idea what these tests had revealed. There is a serious problem with communication between my doctors as these records should have reached my primary last November and only now am I hearing about the results.

Autoimmune has nothing to do with cars

With my first autoimmune diagnosis being Grave's Disease, I was told early on that if you have one you're likely to get another.

My endocrinologist told me this and had me tested for Lupus five years ago. Lupus is becoming big business and I was told that the rash on my neck which has stuck with me for six years connected me with the likelihood of this particular autoimmune disorder. 

I really didn't necessarily care or believe that I had this, as I have been told I had cancer at least three times, and given the variety of illnesses suggested, I didn't trust the tests or the testers.

This time I "felt it" when Dr. Kim said that I have the Lupus markers and that I have had them for years now. He also told me I had a severe Vitamin D deficiency too.

So, in the last 10 months, my tests have revealed not the probable onset of these disorders, but further confirmation of their on-going damage to my body.

I thought there was a cure

Knowing that I had been tested, the tests used were highly sensitive, and I knew somewhere in my mind that I have autoimmune problems, but I didn't know how bad it would get until now.

The doctor apparently didn't realize that I had been sidetracked because of other issues such as Bradycardia, pain episodes that no medicine can relieve, skin molting and weight loss, inability to get my thyroid under control, and finally the gastric issues that left a hole in my hull.

He was not sensitive as I asked about the cure for Lupus. There is a new therapy that had been touted around the internet as a cure for Lupus and my cousin thought to tell me that they could "cure" me.

Self delusion was what is was for me. I could have looked it up and researched it, but I wanted a cure and maybe I wanted hope of a cure. Either way I had a different expectation than what I heard.

The doctor told me they could treat it with Plaquenil the old standard and some Vitamin D which if he had listened to me, I would have told him I was taking a Vitamin D supplement during the winter but he had his agenda I guess. What that means is that there is still miscommunication, again.

Dr. Kim, who had been more sensitive the first time I saw him, made it clear that he was irritated that I had not returned. He said I could have kidney failure and die, that I have to treat the issue.

Well, they could have sent that information to my doctor here in the mountains, an hour away from his office, but five minutes from my home. Not to argue, which is what I do best, but healthcare is failing because of issues such as simply getting these records to the right people in a timely fashion. If this is so serious, then why wasn't a phone call made or a why didn't they check in when I cancelled the appointment because I had been harmed at the local ER?

So, I was told that this therapy would not end the pain, and I would not work again. Yeah, I was glad I had someone with me it was good for me and it also helped me to not hit him for being so coldly direct.

I am lucky to have my friends

I went quiet which is something that isn't me, and my friends have said the right things, as they are my support, they know me and what to say and not to say. They are also my counselors who are continuing to learn about PTSD which is a huge challenge at this stage.

My mind made a note yesterday of the methods the people are using around me to refocus my attention off of certain issues. I am always amazed at the gifts people have to give that they are often unaware of and I try to make sure they realize their importance in my continued life as well as what they bring to the world in general.

I would not have made it thru this last round without all the great care that has been given to helping me back to my feet. My friends have given me hope always, my father has been my strength, and my family has been my backbone, as I walk thru the valley of darkness I shall not fear.

Shit, I'm scared to death, but I have faith, and it's been God given and God driven. I was in the waiting room while one of my friends attended her appointment, and a conversation began with a woman who has many things in common with me.

She was sitting in a wheelchair, and we laughed talking about general things such as the new wave of pain management clinics. I threw in a few caveats about the legal "crack" industry and then I realized there was something about her that I needed to know.

Ask and you shall receive

"If you don't mind me asking, why are you in that wheelchair?" I wondered, being slightly invasive for asking her that so directly.

Her list started with Lupus.

And when she was finally done her husband pointed out her skin allergies, as she had huge red holes in her chest caused only by the EKG stickers.

My mind was reeling as she told me last week that she almost died in the hospital. But then she and her husband started laughing. I said, "you certainly have a good attitude about this."

She simply explained that it had been going on for 10 years and that she had to accept it or continue to be angry. I told her I'm still in the angry stage, but I realize I do need to move on from here as it won't help to do anything but make me more stressed out.

I got up after the conversation and was compelled to give her a hug. Though her issues from health problems were many, her ability to communicate compassion was still intact. She had a great sense of humor, she acted kind, and in that one hour I had a renewed sense that I am not my illness.

This woman was not her illness and I won't be either. Oh, you watch me work doctor, whether it be from my bed I will still maintain to whatever level I can reach comfortably. (though it may be uncomfortable for some certain others)

It's a new day with an infinite number of things I can and will do....

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