That is why I said at the beginning to tell your family and all those you trust around you. You need to know who believes you and those who don’t . Who is on your team and who isn’t. Who will stand by you and those who refuse to listen.

My advocate is my husband. He is with me at every appointment. He stands by my words, actions, and deeds. Holds me up and catches me when I’m crushed. I cry every disappointment on his shoulder, son every betrayal in his ear, and then do the same for him at this trials by fire—he’s disabled as well, remember?

I’m sorry you have been self-advocating for so long. It’s a chore and weakens a determined will only to steel the spine when necessary.

Nothing I say in this is guesswork or out of naivety. It is from experience either in healthcare as a pharmacist or personally from being the caregiver of a man who suffers from severe, agonizing pain every day of his life, or as a progressive CRPS type 2 patient who has no hope of remission and only 40% control and who struggles for any form of relief on a daily basis.
Life was never promised to be easy but we don’t need to live it alone. We do need to be wise and smart though and THAT is all I was saying.
Today’s healthcare isn’t the same as it was 10-20-30 years ago. To act like it is, is asking for you to fall victim to malpractice.

Hi Ginger I could not pass up the opportunity to tell you what happened to me that you could relate to unfortunately.

I had intense groin pain and had to crawl up my stairs in my home for a month. I had a negative x-ray so my PCP sent me to ortho. By this time I could barely wait bear and was on crutches.

He ordered me an MRI and that as well as the X-ray came out negative. What he said to my husband and I when I went back even worse, to discuss the MRI results, was and I quote verbatim, " you know you're getting older, you are going to have pain, you need to take that pain put it in a box and store it in the back of your brain and the worst thing you can do is to stay off your leg."

It took us a few minutes to pick our Jaws up off the floor but we did and went home. There was a voicemail waiting for us and it was my PCP who said she wanted me to go over and get a bone scan which I did.

Usually you wait and a tech will come out and say thank you, you may go home now and someone will get back to you. This time it was the radiologist and he told me I had two broken pelvic bones and to stay off my foot!

So they will take me out in a wheelchair and ever since then I have wanted to write a note to this Ortho doctor saying something like, you know, I did not come to you for a psych eval. But I never did. Clearly he had second thoughts and called my PCP to see if I had had a bone scan.

Now here is the real clincher, after that over the years, I have had negative bone scans and a positive MRI which is in Reverse of what happened then. My PCP told me that a radiologist had told her that daily steroids can interfere with results so now if one diagnostic is negative they proceed with the other and vice versa. There is no Rhyme or Reason and it makes no sense. Now that I have a new PCP I will have to go over all that with that person and I know they usually don't believe me.

It is no pleasure and not fun being a Perpetual patient. But I know God has his purpose in it so I accept it but still advocate for myself. It has taken me so many years of learning so much to be able to do that and I really feel for the people who do not have that knowledge because they have not worked in healthcare and do not understand system errors and because they just do not have knowledge of what their rights are or how to advocate for themselves.

Take good care of yourself, Sunny flower. @gingerw. @faithwalker007

Hi Ginger, I am sorry for the pain and problems you have had with your journey with poor health.

Would you mind taking me through the sequence of you're getting diagnosed with systemic lupus?

I have a mixed connective tissue disease and they've called it collagen vascular disease but I've noticed there are something like 86 autoimmune diseases and many, many of them share many of the same symptoms.

If you are comfortable with sharing the process you went through to get diagnosed and the lab test and values I would be very interested to know.

You can private message me if you want.

I do not mean to be crossing any boundaries so if you are not comfortable sharing these things with me, then no worries at all.

I have been taking a demodifying anti Rheumatic drug (DMARD) called Auranofin aka Ridaura, for 23 years. At the same time I was put on daily prednisone and Plaquenil AKA hydroxychloroquine.

After 21 years, the Plaquenil caused some tissue death in my retina so I had to get off of it immediately. However, were I to get Covid-19, I would take it temporarily in a heartbeat!

My rheumatologist, pharmacist and nephrologist could not agree as to whether or not the auranofin was causing my stage 4 kidney disease.

I tried to get off of it 8 or 9 times but when it wore off I was in such intolerable pain that I said each time, never, never, ever again will I make an attempt to get off of this drug! It was so bad yet I still to this day want to try. But now that I have adrenal insufficiency and am steroid dependent because of my daily steroid use for so many years, my rheumatologist and I don't know what to do but we think we will try again.

My pain now with my neuropathy and other health problems is so much worse that I just don't know if I can do it or we'll try.

Besides being a long-term patient of many specialists, I also worked in healthcare for over 20 years and my career goal was to become a physician assistant. I became so ill that I never could accomplish that. But I have been a diagnostician since birth and am fascinated with the human body and pathology so that is why I asked you to share your journey and also because I might find a piece of the missing puzzle for myself.

I hope you are having some victories today and I will be praying you can experience relief and the comfort of God and peace of Christ which surpasses human understanding (Philippians 4 :7). Many blessings, Sunny flower. 🙏😊🤗