My new reality

General Blog
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Well, its finally happened. I have accepted that I am a broken person, and have stopped saying "yes" to everything anyone asks me to do. After spending the last 4 days on bed rest for muscle spasms and my sciatic nerve sending ripples of hot agony down the back of both legs, and because my immune system has decided it's new playground is my FEET, I am learning the skill to say, "I'm sorry, but I am just not going to be able to do that at this time."

After several months of misery and the flare on top of the flare on top of the flare that I've been dealing with, my clinic doc has made a decision. As of today I am no longer taking MTX. He has some other pill that he wants to start me on (and it is one he will provide to me for free), but that begins next week. I don't remember the name of the pill he is giving me, but apparently it has fewer side effects (including leaving my ever loving liver alone), and he thinks it will be more effective. This is almost like the end of an era in my journey. As soon as I have the name, I'll let you know (I guess it is actually an antimalarial?!?). Oh...but that isn't all my news by a long shot...

I tried to sign up for a clinical research trial for a new drug for diabetes. Went to my first appointment, and came home with a shiny check for $50 and an appointment for the following week. After each appointment, I'd come home with another wonderful $50 check (extremely useful in our strapped financial times). Got a call Monday that I do not qualify for the study. Apparently the good news is my A1C is lower than their cutoff - a full point lower than it was the last time I had blood work. The bad news is my TsH is suppressed to the point that even if my A1C were in their range, I couldn't participate in the study. So now we get to add thyroid problems to my growing list of medical issues.

AND, my disability attorney called me to let me know that we are still in a holding/waiting pattern, and that I can expect my court date to be sometime after June.

AND I worked up our taxes, and because I was forgiven for my student loan for complete and total disability, and because the IRS counts the entire amount as taxable income (why, I don't know) and because if that is, indeed, income we no longer qualify for the earned income credit (though our actual real income was less than 30k)...we now owe the IRS over 5k.

Which means that we won't be getting the tax refund that I was counting on to pay the lawyer to help us declare chpt 7 bankruptcy which was not our first choice of things to do anyway, but has become increasingly apparent that it is our only choice because of the relentless phone calls we are getting from all of our creditors who are no longer content to wait to be paid.

The last 2 months have been hell.

But you know what? There is a certain freedom in saying, "OK God. Good joke! Time to let up on the crap and start letting me breath again, k?" Even more amazing, I really don't miss going constantly and doing all kinds of stuff that I know is going to be painful. <shrug> I may even get to like this new me.

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Oh, tmbrwolf, I’m so sorry. It doesn’t rain but it pours. You really are getting it from all sides, aren’t you. Hang in there … and hang out here as much as you can. I’ve been missing you, as I’m sure others have.

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thanks Seenie and Sybil. Sybil, in answer to your question: I could get on either the Humira or Enbrel patient assistance program, but I've been on both and neither worked very effectively for me longer than a year or so. I even went on Enbrel a second time after realizing I couldn't afford the infusion for Remicade anymore but it didn't work at all the second time around, and the doc (at the time) decided the risks outweighed the benefits to me in both cases. The Remicade worked really well for the time I was on it, but no one here will infuse for less than what my husband's paycheck is for two weeks of work - not going to happen! The free clinic I go to seemed "willing," but I question their effectiveness given that the majority of staff are first and second year med students and didn't even recognize Psoriasis when they saw it...not ready to put my life in their hands (literally). They do have one staff member who has even infused it before, but they work on a rotating schedule, so...yep. nope. Not running that risk.

To be completely truthful, my parents have offered to pay the attorney for our bankruptcy, and my mother in law has offered to pay the IRS, but I JUST.CAN'T.DO.IT. You may say it is pride getting in the way of my good sense, and that may well be a piece of it. But the biggest part of it is that I just can't get my head around the fact that I'm 47 years old and have to rely on mommy and daddy to take care of my problems. I have fought like hell to become self reliant. It wasn't easy during the 9 years I was a single parent of two kids with medical disabilities and I had to accept help a lot more back then - but it was for my kids, so I sucked it up and did it. I respect myself too much to slide back into the codependency in which I was raised. It may well come to my accepting their help again, though it pains me to no end. I know the stress is NOT helping my disease. Bless my hubby's heart - he is staying WAY out of this entire decision. He is leaving it up to me because he knows how I struggle with it. I guess I'll wrestle with it for a bit longer and then force myself to either accept the help or figure out plan B. Mostly I came on here to vent to people who understand what I'm talking about so much more than anyone else in my life. I can't thank you guys enough.

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Oh! and yes, its the plaquenil. Thanks for reminding me. Now I can look it up and see what the side effects are, etc. BEFORE I start it!

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I hear you, tmbrwolf, about the self-reliance thing and I would be the just the same. I can’t think of anything helpful to say, except that we’re here with you and for you. And we do get it, as much as anyone can get someone else’s suffering.
You may as well give plaquenil a try. As far as I can remember, it doesn’t have a lot of side effects. And the big positive is, your risk of contracting malaria is low. Very low.
Promise to stay in touch?

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promise. LOL I guess now is the time to rush out and visit a third world country, right? I was on antimalarials once before when I went to Honduras. Don't think I'll be doing any major traveling anytime soon. My mom is allergic to sulfa based meds, so at least there is ONE nasty genetic issue that I managed to avoid! go me!!

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Ya, tmbrwolf, a safari would be good. Glad to see that there’s still some of your sense of humour intact. Go you indeed!

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Tmbrwolf, I'm sorry to hear that everything has gotten so bad for you! Such stress--you definitely could do without it. Seems like sometimes things just build up and build up until something good finally happens! You are right in just letting go of the "crap".....they say in AA, which is probably a good message for all of us sometimes, "let go and let God". Which, whether you believe or not, the message can apply to anybody if you take its meaning to be not that you've given up, but that you need someone to intervene and help you figure this out--you can't do it yourself. The relatives are so nice to offer help--they must care so much for you. I know it's hard to accept their offer, but they want to help you. And, I hope plaquenil works! My cousin is on that for RA and it's working well for her and as far as I know she has no SEs from it. Good luck!

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So...I'm back. ish. Here's an update on the stuff we'll call: Hell on Wheels

Epic failure told in short story format: The plaquenil failed. Helped for a bit, got put on a ridiculously high dose to make it work. Then it stopped. Got switched to arava (leuflonomide I think is how its spelled). Worked ok. Got put on a ridiculously high dose to make it work. Then it stopped. I am now on (this is truly delightful) long term prednisone treatment. The clinic doc, who was never exactly helpful, has pretty much given up. I am now effectively NOT treating my Psoriatic Arthritis. I am treating symptoms of the disease...more or less. I cried. A lot.

More fun and games: Because my immune system is absolutely screwy, my little touch of strep throat turned into a raging ear infection in a matter of hours and ruptured my eardrum from the pressure. I can no longer hear out of that ear. Fortunately, the infection seems to be under control at the moment, though I've been through two full runs of oral antibiotics and antibiotic ear drops...and its starting to hurt again so that isn't a good sign.

I finally sucked up my pride, accepted my mom's help, and filed for bankruptcy. Our "meeting of the creditors" was this week. The whole thing should be finished by Dec. 28th.

Some good news: I FINALLY got a hearing date for my disability. November 10. Please please please cross your fingers, toes, eyes, anything you can and send warm fuzzy thoughts into the universe so that SS will decide that I really can't work just like all my doctors and the Oklahoma Department of Vocational Rehabilitative Services says. Now I'm a nervous wreck because I literally have no idea what to expect at this meeting and my idiot attorney hasn't seen fit to tell me anything other than "dress in what you would wear to go to the doctor. don't dress up." Wow. That was helpful advice. Not. In fact, I'm so nervous that I'm having panic attacks. Had one earlier today. A bad one. Or...it could be the prednisone. I just don't know.

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Oh...other good news (I almost forgot!) While seeing the attorney for my bankruptcy I mentioned that I had only filed my husband's income tax (and why)...the student loan forgiveness thing. He pointed out that the IRS has remedies for these things and sent me over to the local IRS office conveniently located 1 1/2 blocks from his office. Voila! I filled out one little easy to understand form and filed an amended return, and not only do we NOT owe the IRS a whole bunch of money we don't have...but we now qualify for the Earned Income Credit and are being sent a rather large return. Whew! What a relief! I just hope I filled the thing out correctly...

I won't actually get to spend any of the money from that return until the bankruptcy trustee ok's it, and some if not all of it will be given to our creditors as part of the bankruptcy...but I don't care! I don't have to miraculously make 5k+ appear out of thin air to pay the government.