There Might Be More

Having a chronic illness is a bitch, but twenty years or more of having a disease can lead to more questions than answers.

Autoimmune diseases, like I have (psoriasis and psoriatic arthritis), unfortunately travel in packs.  Which means, sucks to be me, I may have more than one, like Lupus, and other more awful things than what I think I already have.

However, a new diagnosis, would in fact, explain alot.  See, I've been on most of the biologics available on the market and none have worked.  Some have made be feel better for a few months, but after that I am in pain again and my skin gets worse.  I'm having that problem now with biologic number five; Cosentyx.  Cyndi Lauper takes it.  She's old, and it works for her, but her Queen's accented ass can still get up on stage and do what she has always done.  I had to give up my musical career due to my illness, I'm 32 and need a cane.

Cosentyx was supposed to be the answer to all my prayers (they clearly don't know what I pray for), my swelling was supposed to disappear, my skin was supposed to completely clear up, I was supposed to drop down fifty pounds and still maintain my 38K's (not really, but you get the picture).  Problem is, my skin is getting worse and I'm in fucking pain, and I lie about how much pain I'm actually in.  OTC's don't work, and Percocet just puts me to sleep, so I'm assed out.  My leg bones are grinding together.  It's the most unpleasant feeling in the world.  I'd rather be in labor and giving birth because at least I know it will end and I get a baby out of it.

I was promised a miracle with every single drug I've ever been on.  So what if this whole time, I've just been on the wrong meds for the wrong disease? There is no doubt that I have psoriasis.  But what if on top of my arthritis, there is something else? Something that would explain the severe pain and muscle weakness as well as all the other symptoms I have?

Luckily I may get that answer in two weeks.  My Dr. took eight large vials of blood to send to the specialist laboratory.  She's testing me for everything, from Lupus to Fibromyalgia, Cancer and Lyme's.  I even asked her to test for Familial Mediterranean Fever just cause I'm Greek and many of the symptoms fit (it's just the drugs for that are literally deadly).

I'll know in two weeks what the verdict is.  If nothing else is there, then I switch to Remicade which is a dangerous drug that treats cancer as well as causing it.  For that drug I must go to a special office to be monitored for three hours after the infusion because the side effects can kill me.  Such fun.😒

Part of me hopes there is something else there so I can finally have an answer and see if other drugs will work, the other part is scared and wants to be held and cry because it's all not fair.

In the meantime, my Dr. advised that I go gluten free again, this time for good (pasta is so delicious, but I must remain strong).  Then it's a wait and see game.  I'm just so tired of being tired and sick.

It also sucks that in the what I know helped me in the past I can no longer afford.  Acupuncture and herbs helped tremendously.  But it's expensive.  Cosentyx costs Medicaid 10K per injection, I don't pay a dime, but it's still way more expensive than if I were on holistic care.  I'm also interested in CBD oil.  In NYC, I more than qualify, but, it's 100 bucks a week, plus the cost for the card and doctor's appointment that Medicaid doesn't cover.  I wish they covered the more natural approach, but I'm grateful that I don't have to pay for anything, other wise I'd be a withered lump in bed unable to even walk.

So, I bid you all goodnight.  And wish me luck.  For those of you who are ill, don't ever give up, fight for your well being, especially the cost involved.  And also fight to legalize marijuana and other plants that can be made into meds.  We need more sustainable options that won't kill us.

Blessed Be!
🌒🌕🌘