WTH?!

By amypollock82

1 min read

Why couldn’t anyone tell me how the “next step“ in the progression of RA and MS put together would feel like physically and emotionally!

Why couldn’t anyone tell me that a trauma could push me further into the “next step”?

Why couldn’t anyone tell me that the pain I had before was nothing compared to my future.

Why couldn’t anyone tell me that RA and MS flares that happens at the same Feels like there’s a war going on in my body..

Why couldn’t anyone tell me that my life would forever change and not for the better.

Why couldn’t anyone tell me that in order for me to deal with the pain and my new reality would consist of constant sleeping and narcolepsy just to get through the day.

Why couldn’t anyone tell me there’s only so much positive thinking you swallow before you decide WTH?!

Oh right it’s because no one will ever know!

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L rick Phillips Moderator & Contributor
Amy, Unfortunately I was not able to find any direct information to share. I am sure it exists, but I simply could not find it, except... There was one pertinent article. Sorry it is not more. <a href='https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4937922/' target='_blank' rel='noopener noreferrer ugc'>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4937922/</a> rick - moderator
1. amypollock82 Member
 Don’t be sorry Rick that’s actually very interesting and good information. My mom has 3 autoimmune and lung cancer I’m surprisingly following in her footsteps. I just have a blood disorders that cause blood clots and an MS lesion that’s wrapped around the dead brain matter so it makes me skip a step or a few! I have many problems and I honestly think they are the reason I have more bad days then I have good days. I also say I’m a few numbers short on the DNA lottery. Between my mothers health and my biological fathers health. I was doomed from birth I just wish I could handle it more graceful and be able to push through all the hard times like I used to. I’d never thought I’d say I’d take the pain I was going through prior to the “pain pump” you’d think it would help my pain but nope not me I’m so much worse then I was. Apparently my spinal fluid is not A fan LOL!
2. L rick Phillips Moderator & Contributor
 Amy, I get that, my body is a wacky machine and it seems to get more wacky as I go along. I woudl file for a lemon aw guarantee, but apparently that is not yet possible.
piano14 Member
I felt the same way when I lost control of 2 of my fingers due to tendon ruptures that happened in my sleep! Then I heard from the doctor, "Oh, this is a common occurance." Would have been nice to know. Now I sleep with brace supports.
1. piano14 Member
 Thanks for your honest answer. I really like my doc, but she is young and very optimistic. When she prescribes me a new med I know she believes it will help. To me, though, after 21 years of RA meds, it's just more trial and error and getting used to new side effects. I'm ready to ask her to give me proof that one of her patient's has really benefitted from the drug before I undertake the huge task of changing medications. I don't believe the commercials or drug company reports. I'd have to hear it from a real person.
2. piano14 Member
 Thanks for the article link. I'd rather know what symptoms to watch for instead of realizing I have a problem too late. Maybe the docs think if you don't know the worst of it, you won't make "imaginary" complaints. Or, they just don't want to take the time to give you a full run down of what to expect as RA progresses.
claudetmich Member
Amy, I have had RA since I was a young child & not much was made of it then. I was given Cortisone pills which I took for many years. After I got out of school I stopped taking it and just took Tylenol for the pain. I didn’t go to a doctor for about 34 years after having bad experiences with both of my doctors during pregnancy. The only doctor I saw on a yearly basis was my eye doctor. He is the one who sent me for my first MRI which opened a huge can of worms. Lol. I then had to get a PCP, Neuro I had turned 60 that year. So now I have what I call RAMS. fun, fun. But laughing is better than crying.
1. amypollock82 Member
 I almost asked you what RAMS meant! Oi! Obviously I’m already losing my mind. I also had a stroke and I think there’s only so much a brain can handle before LOL but I love love that.. I’ll have to use your word! It’s gold. T-shirts must be made Hahahaha!