Day 4 - #HAWMC WEGO Health Writer's Blog Challenge - for the Month of November 2016

Day 4 - #HAWMC - A Letter to "Myself" at the time I was diagnosed knowing now what I did not know then....

 

 

Dear Rhia (self),


You had already "figured out" that something must be wrong with your immune system. You had been through enough doctors, tests, had so many symptoms resembling Lupus, RA, and several others like Sjogren's and Raynaud's that you really did not know much about.

When the 1st round of labs came back, from my own PCP (who diagnosed me at first), he knew that you needed to see a specialist. Although you come to find out your PCP has been more beneficial with the Lupus and Lupus Flares, that the Rheumatologist, who concentrates more on the RA than the other Autoimmune diseases.

You now can recall the first Rheumatologist, even though he was quite elderly, had just came back to work after a stroke himself, but his diagnosis, just after a thorough examination gave proof enough to show not only did I show signs of Lupus, RA, Raynaud's, Sjogren's, but had findings of probable MCTD, and that was almost more frightening than the Lupus and the others.

My moments that now I wished I had realized that ALL RHEUMY"S are NOT THE SAME, is something I wished I knew when I was first diagnosed. That caused me going through at least 7 specialists, each of which had a different "edge" and look on my diseases, or lack thereof. Most of them were only "blood work" driven. Not anything to do with all of the symptoms I had for years and years.

I could have saved myself a great deal of stress, worry, and getting nowhere, had I known to search for the "proper" Rheumatologist from the beginning. I've also come to find out my doctors here at my local Urgent Care know more about my conditions, than my Rheumy's for the most part. Plus if I am in a severe flare, there is no way I could get into my Rheumy in Dallas quickly. With those at Urgent Care I can be in and out, have the medications I need, and be hopefully on the road to curving the flare, without having to drive 40 miles each way, and maybe not getting what I need.


When I found out that I had 2 or 3 other 1st cousins, all on my Mom's side with RA, then we each began to piece together that this could very well be "genetic".

I wished I had known more about Sjogren's, for one. Maybe had one doctor done more about the Sjogrnen's I would not have lost ALL OF MY TEETH WITHIN A COUPLE OF MONTHS, requiring severe pain, and many dentists visits, to have all of them pulled that were left, and then try to deal with dentures, and the expense of over 15,000.00! Now I am still left with "pretty straight" teeth, BUT "fake" in nature.

So, I also wished I had more knowledge of how I could have been a volunteer and advocate before I myself had been diagnosed. I think had I been involved in some ways with the organizations who help us I may have felt "better" about myself, and not so ashamed of what these illnesses can do to us, our minds, bodies and souls... plus relationships, friendships, and the way people "see" us after we are ill.


#HAWMC

WEGO HEALTH

https://www.facebook.com/hashtag/hawmc?source=feed_text&story_id=10154656411124254 

 FACEBOOK URL FOR POSTS FOR THE BLOGGER'S CHALLENGE

 

 

Tomorrow is THE DAY (I dread)!!!! Discogram on lumbar/sacral spine....

I've said a bit about this here, but I have not went into lots of details...

About  months or more ago, I began to have a huge issue with severe pain in both hips. I did notice it was a bit painful kind of at the last vertebra on my lumbar/sacral portion of my spine.

I still thought it was my hips. I've had to have them injected a couple of times before with corticosteroids to calm down bursitis, and the like.

But, I had to go to my Orthopedic Surgeon that done my shoulder replacement and then my 4 level neck surgery a couple of years ago.

Due to insurance changes my former insurance would pay the local Ortho Docs, but they are not taking my newer one. I had already had this being "diagnosed" with my Pain Doctor. In fact he did epidural injections in that area.. and for about 3 days, it felt better... and then it went back to severe and now I can barely stand the pain. In the past two weeks, I guess due to ALL I've been trying to get done around my home, from getting the lawn mowed (I tried to "weed eat" part of the front where It was so tall.  My neighbor that usually mows it I guess was working a different shift and had not been home to mow mine nor his. Well, the weed eating did not help my hips, bu it did knock down some of the taller grass/weeds...

Then I moved all of my furniture around in my bedroom and some in my living room, took down an old desk, hauled it out front to get rid of it, along with a couple of "Mac" desktops. They probably needed power supplies, but I just didn't want to mess with trying all of that, and then the hassle of selling them. So, they went quickly, just like everything else I sit out there. I put a free sign on something and before I can come in the house good, someone always gets is quickly... great for me... no having to try and have it hauled off, or try to take it apart enough that the trash will pick it up etc...

So, between all of that, trimming trees, and gosh you name it, I've had been doing things  I really should NOT be doing but someone had to....

Anyway, I face a discogram in Dallas in the morning (Friday)... we are already pretty sure what it will tell.. I imagine that there are either compressions fractures due to the osteoporosis... and I know some slipped discs, plus I have something kind of like "scoliosis" My spine in that area is "tilted" ...

So, everyone keep my in your thoughts - my son has to drive down here in the early AM, I have to be in Dallas at the hospital by 7AM and I've read several things about these and just about every thing I read, one tells it this way, and another tells it the other... I will add a couple of links below. Right now I can barely stand the pain, just to sit in my computer chair. It makes my hips again feel as if they are on fire....

http://www.allaboutbackpain.com/html/spine_diagnostics/spine_diagnostics_discogram.html


http://www.ainsworthinstitute.com/discogram

https://www.cedars-sinai.edu/Patients/Programs-and-Services/Imaging-Center/For-Patients/Exams-by-Procedure/Interventional-Neuroradiology/Discogram/Discogram-Procedure-Information.aspx