Hi y'all! I am a 33 year old opera singer, I am married, and have two cats, and a therapy dog Maggie, who is the light of my life. I joined this site last fall when I was having trouble breathing, but never felt the courage to post. I finally decided what the hell.
My breathing issues turned out to be multiple severe lung embolisms, and I was in the hospital for a long time. I had to go to half a dozen doctors before one realized what was happening and sent me away in an ambulance. I told the people in the hospital that I totally couldn't stay because I had to rehearse. I had rehearsed the very same day, but passed out three times because I couldn't breathe. Anyway, THAT happened. :)
So I am not sure what to write here, so I will try to share my story. I might have to be brief because I am having trouble typing right now. I started having PsA and Ankylosing Spondylitis symptoms when I was about 9 or 10 years old. My parents dragged me to so many doctors, I did acupuncture, acupressure, cranio-sacral therapy, massage, physical therapy, Feldenkreis, yoga, meditation, pilates, ultrasound therapy, chiropractic, Reiki, magic crystal healing (I am not even kidding), magic tuning fork therapy (I swear this is not a joke), and even had a doctor tell me the pain in my feet would go away if I imagined "the sun rising" under my arches for 15 minutes a day. So yeah.... Obviously none of that helped. When I was 22 I was told by an orthopedic surgeon at the Cleveland Clinic that I had psychological problems based on a 2 minute examination and no tests, and he wrote me a prescription for a Psychotherapist. I told him he was sexist and full of S***, and he literally kicked me out of the hospital.
So I completely avoided doctors for several years even though the pain was unbearable, until I was in a car accident. After the accident, I was prescribed pain medications, which was a huge relief. Unfortunately I lost three years of my life on Nucynta plus several other drugs, which let me tell you helped the pain, but I don't remember a thing, and was unemployed most of the time.
Then three years ago, my foot blew up so big it didn't actually look like a foot. I looked more like a tree stump. I wasn't able to walk at all, and couldn't fit into any shoes, and I was sure my foot was broken and infected. I ended up in the emergency room because a Radiologist thought it might be thrombosis, and they told me I had Rheumatoid Arthritis. And I was like "um.... I thought that is what elderly patients have" because I was completely ignorant, and they said go to a Rheumatologist, so I did. And he was awful, and even though I insisted I had Psoriasis, he insisted it didn't look like "normal" Psoriasis, so it couldn't be PsA. However, it turned out to be Pustular Psoriasis, which even though rare, is totally part of PsA, which he finally had to admit I had, plus Ankylosing Spondylitis. But seriously, even when my skin is cracked and bleeding, it is the absolute least of my problems. After over a year on MTX and him doing insanely expensive tests that I couldn't afford, I finally moved to another city and switched doctors.
So far I have tried or am currently on MTX, Leflunomide, Azithioprine, Prednisone, Tilidin (a painkiller with Naloxone so I have my brain back, yay!), Xarelto, Nexium, Folic Acid, lots of vitamins which probably don't work, Gelatin (working wondering on my horrible nails), Tramadol (which gave me grand mal seizures), Mirtazapine to sleep, Zolpidem also to sleep, Fentanyl, Nucynta, Oxycodone, Celecoxib, and steroid eye drops. I take between 17-25 pills a day. Not fun at all...
My symptoms are too many to list here, I have a list going of about 80 symptoms, some of which have been life threatening. So far, I have had no relief from the DMARDs. I am finally starting Biologics this month once my TB test clears, and I am hopeful, but honestly it seems like people respond so differently that there is no telling if this will work for me at all. It is easy- especially on days like today where every single inch of my body hurts, and my skin feels so painful even when someone lightly touches me that I cry, and all I can do is watch reality TV in a supine position and I just want to sleep but can't- to feel like my career will be over in a few years at most, and that I will be on disability. But hopefully I am wrong. It's so hard not to feel like a burden on my loved ones, and to worry about how I in my condition will take care of my parents who are working so hard and can't retire. I wonder if I am feeling like this at 33, what will I feel like at 70?
So anyway, that is my sob story, I hope it wasn't too whiny and long winded, and I look forward to getting to know people in this community, and helping to support each other. I am very interested in other people's symptoms and comparing notes.
Thanks for reading, if you made it all the way, haha!
Maeggyn