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Living with Psoriatic Arthritis (PsA)

I'm not disabled


#1

Hello Everyone!

I’m new to the board and came upon it while doing a bit of research online.

I’ll start by saying I have PsA and P. Had P for years and PsA since 2014. It’s getting worse everyday. I’ve been most of the biologics with little to no improvement (skin or joints). So I pretty much running out of options.

Rewind a few months to Jan when my employer switched insurance companies. From that time forward it’s been a nightmare of drug approvals (prior had no issues). In order to use Taltz and I would have to try Stelara. I decided fine what do I have to lose and took Stelara. P calmed down a bit flake wise, but my PsA/ joints haven’t stopped flaring. I have it in my hands, elbow, hips, knees, ankle and feet. The Doctor I was seeing wanted to see me again for a re-evaluation to start the process for Taltz. At that time I made the decision that I wanted to switch Doctors and have another set of eyes look at my history. (bad decision). I didn’t care for the 1st Rheum, but the 2nd one was even worse. She basically told me that my only option was to start methotrexate, which I do not want to take. Maybe a bad decision, but it’s my decision. I kept saying no and she kept saying yes. I felt the whole visit was her push to sell me on methotrexate and I wasn’t having it. I left with another 12 weeks of stelara.

Fast forward a couple weeks when I had my appt with the Derm. She asked if I had ever tried Methotrexate and I said no that I didn’t want too. (I am thinking in my mind here we go again). She to my surprise said, I don’t blame you. Finally someone who will listen. We went over everything and she agreed I could give Taltz a try. She has patients on it who have seen great improvement. Of course it was denied because I haven’t tried Methotrexate, which wasn’t on my denial letter in Jan. We are appealing it and hopefully will have an answer soon.

Now fast word to this week. My handicap permit is set to expire in July, so I sent the paperwork to the Rheum to complete as they completed the last one 4 years ago. I got an email back from her asking what my disability is. Seriously? I have a hard time walking, my feet at times are swollen, I can’t bend my toes, my big toe is totally numb, pain from hips down to feet (sometime numb), ankles and back of feet hurt, most times I have to walk slowly due to the pain or stop and rest and I can no longer do stairs like normal. I fractured my left foot in 2013 and was in a boot for almost a year. Which is around the time I start having PsA symptoms and gained a major amount of weight due to inactivity. I can no longer do stairs like a normal person. Stepping off curbs I go sideways. This new Rheum won’t sign it because she doesn’t support the Eligibility Certification Statement and she asked the other Rheum to sign it and she won’t because I am no longer under her care. She seem to think that at my appointment the reason I was able to lose weight was by walking. Not the case (monitoring my food intake on WW). I try to walk as much as possible, as I want to keep moving and hopefully get better. Weight loss will only help my joints as I am about 175 over weight. Nothing has changed and if anything has gotten progressively worse since the originally Doctor signed the form 4 years ago. (she is no longer there sadly or she would still be my Doctor).

I’m beside myself. I surely don’t want to pay to see another Doctor (the other Rheum were PA/NP not Doctors) just to see if they will sign my paper. I keep sitting here thinking about the long walks I will have to take to work in the city and god forbid the elevators break down and I have to try going up and down flights of stairs in the parking ramp. I know I have some good days when I am not flaring, but those days are far and we between unless I am talking Aleve by the handful. Even Aleve don’t work anymore to numb the pain or inflammation. Maybe I am wrong to think I should be “approved” for the permit, I don’t need it, that others are worse off than me, that I am perfectly fine. This condition is depressing, if it’s not one thing it’s another.

Did I mention, now I will have to find another Rheum because I ain’t going back to this other lady. wish I could find one who I like and will listen to me and hear me out.

Sorry for the long rant. :frowning:


#2

It sounds like you’re in the gap. You may find that once you’re well medicated that you truly are not disabled. In the meantime, can your gp sign off on the paperwork?


#3

Well that’s part of the story too. I went yesterday to see a Doctor at my workplace. We have onsite healthcare. She works with my the Doctor who is listed as my primary Doctor. She wouldn’t sign the form either because “she doesn’t know me”. I’ve also seen this same Doctor a few times previously. I get up and walked out, as I wasn’t getting anywhere with her. She just looked at my chart and noticed that I had already dealt with Rheum prior to seeing me. So she came in questioning why I wasn’t in Rheum. I haven’t had a need to see any other Doctor as I was being treated by Rheum and now Derm (waiting for the Taltz approval). I agree. Once I get everything under control maybe I won’t have an issue, but nothing has worked. I don’t want to keep seeing Doctor upon Doctor just to be told the same thing. It’s pretty costly. I’m just so upset that no one can look at my file and notice how long I’ve been dealing with this. Maybe I need to start emailing and calling everyday with all the issues I am having for someone to listen and understand. Maybe I don’t complain enough so no one knows. Maybe I am just wrong for thinking I need one. :frowning:


#4

I think you can get a dentist to sign one in my state! They seem to hand them out like aspirin. I asked my rheumy if I could get one for days I couldn’t walk. He pulled one out and signed it no questions.

Where the heck do you live it is so much trouble?


#5

WI. The Rhuem says I am not severely impaired. :frowning: I give up really. I’m at a loss on what to even do at this point besides try finding a new Doctor. Unless I am crawling into her office she isn’t going to sign it. Needless to say I won’t be seeing her again. She obviously don’t understand the pain I am in.


#6

So sorry to hear. They are generally very hard to get here also - for example, I couldn’t get a 3 month temporary pass for something as obvious and “provable” as a broken leg. It was my left leg, so I hired an automatic car so I could drive - but then I’d get to the shopping centre and would have to be on crutches for 300m before I could get through the front door :joy::joy::joy:. After that experience, I didn’t even ask when I got rather “invisible” PSA.


#7

Thanks Jen for your reply. I know I am not alone and it shouldn’t be such a struggle. I’m to the point of switching medical centers all together and see if I am just nuts. It’s depressing and stressful, which isn’t good for this condition. someone has to understand.


#8

So sorry for your trouble. Some doctors are pure idiots with no empathy or compassion. I have trouble getting from the handicap parking to a cart that will help me walk. Just keep trying to find a good doctor who will actually want to help you. They are out there - Really! It took forever for me to find a doctor and a compination of medicines that help me cope. Hang in there and don’t stop trying till you get it right!
Blessings!