sinisterporpoise: (Default)
 I don’t know why, but I thought it would be good to look back at the past year and the stages I went through today.  Parts of my journey are ones I would like not to repeat, but they are not things I can take back.  Denial, anger, bargaining, depression and acceptance are part of it, but there are also stages that I went through in how I dealt with my new reality. Some of these mimic the states of grieving, and others do not. For me the stages were confusion, fear, a bit of anger, feeling sorry for myself and coming to the stage where I am now.  Something might lie beyond this stage, but I have yet to discover it.

Confusion set in when the severe cramps in my right thigh started to keep me up at night. I wondered what my body was doing and why it was doing it.  Having no insurance at the time failed to help the issue at all.  Trying to figure out what was happening to me and get some relief from the symptoms dominated my thinking.

Fear set in after the first clinic appointment. I was being asked questions about multiple sclerosis, diabetes, rheumatoid arthritis and several other autoimmune diseases. It seemed odd that they would even be asking me these questions since the pain seemed confined to my thigh. It was at that point fear set in.

The doctor’s assurance that it was a pinched nerve in the hip – miralgia paresthetica – only assured me for a little bit. Eventually the pain spread to other areas of the body and I knew something else was going on. I tried to seek other answers, but got told it was likely a meniscus tear. The doctor didn’t even admit she was wrong after the X-rays she ordered came back.  I wondered if it might be one of those scarier diagnoses the first clinic had mentioned.  At this point, I was still without insurance. Finally, I got insurance coverage back and saw my regular doctor. He said fibromyalgia.

At this point, I went through the anger and feeling sorry for myself stages. While I knew this was the best possible diagnosis for what was happening, it also meant he had let me know that I would likely have chronic pain for the rest of my life.  I was angry. I wanted to lash out at others, and I was wallowing in pity. This was the most difficult stage for me to leave.  I’m not proud of my behavior during this time. The misery I felt was something I wanted to share and spread around. With luck, this phase ended before it caused any permanent damage to some of my relationships

Eventually, I came out of this and realized whether I liked it or not – and I don’t –  that I was going to have to live like this.  The pain might be overwhelming at times, and I’ll have to put up with the depression and mood swings as they come.  And this is where I find myself now.  I’ve even come to the point where I recognize that doctors are not all-wise, all-knowing sages and have come to my own theories about what is wrong with me, even if I don’t think it’s wise to share them with my doctors.  I don’t know if this is another part of the process, where you get more and more pieces of the puzzle until it finally all comes together, or if you’re just waiting for your body to show more positive signs of certain illnesses.

As it stands right now, I’m pretty sure I have some kind of connective tissue disorder, especially since the most persistent pains seem to be just above the elbows and just above the knees. The ankles have decided to join the game more permanently know as well.  The fact is, I don’t know for sure, and I recognize that I could be wrong.

I don’t know what happens after this.

 Note: I still feel like crap today. The cough is getting worse, and it’s only be tampered by me sucking on cough drops all day.  I wonder if this is a result of the fluid-filled cysts caused by my Hashimoto’s Disease or just seasonal allergies.  Not that it matters either way. Coughing excessively is exhausting and it hurts after a while, with or without fibromyalgia.

sinisterporpoise: (Default)
 Spending time in fibro chat room can be depressing. Such forums often turn into a vehicle to air their complaints. However, it's also one of the few places you'll find other people who understand.  Last night, the topic turned, as it often does, to the financial struggles each of the regular chatters face. One person, who lives in Ireland, successfully got her social security equivalent. The people in the United States are still struggling with various elements of the disability system in the United States. Most of us are stuck in disability limbo. We are either married or have support from another source.  All of us would rather not have to live off of other people in this matter.  The system, in each of the states in question, seems to be the same one that exists in Indiana. The other two people I see regularly in the same situation cannot even get food stamps because their husbands make too much money.  (Now, everyone here, for some bizarre reason, has been diagnosed with fibromyalgia and some form of arthritis, even if the form is non-specific. I think it's just coincidence.)  Eventually, she expressed regret that there is no help for people like us.

And she's exactly right.  Even though she's in her late 50s and fairly close to collecting social security benefits anyway, the government expects her to prove that she cannot do the work that she used to do.  Her doctors told her to stop working, but the Social security administration is making her wait to even get the initial review. (The one that almost always says the doctors are wrong and someone either is not disabled or can do some other form of work.)  They sent her case into administrative review and she has to wait until December to even get that answer. My case went quickly.  I think they'll take more time with the reconsideration, as they're actually seeking out the records that exist under my dead name.

In the meantime, we exist in limbo. We live and keep roofs over our heads, but we enjoy this privilege only as long as others tolerate us. We're forced with living on the street or finding a new job to keep us afloat. As far as the government is concerned, getting a new job means we did not need to apply in the first place. If the same problem happens, the law does not consider that we were only delaying the inevitable to avoid the unpleasant circumstances of not having an income.

Part of me really wants to go back to Pennyslvania, but I'm stuck here for now, unless some other miracle occurs.
sinisterporpoise: (Default)
 1.) Lobby to provide low-income coverage to residents of the state of Indiana and get approved
 2.) Provide paperwork that shows an impressive array of services  at what are supposedly cost-saving measures.
 3.) Sign up  the state and get customers to pay a modest premium
4.) Do everything you can possibly can to prevent those services from being provided
5.) Ignore federal law that says you can't discriminate against transgender people, frequently change the gender marker every time a doctor's office sends in paper work with a gender marker that is the opposite of your legal gender
6.) Refuse to pay for this low-priced medication on principle, even though you've already refused to cover Linzess and probably certainly wouldn't cover Lyrica because there's no generic for it at the moment. (Thank goodness I'm on gabapentin.)

Okay, I'm done complaining.  This is the second time they've pulled this particular trick. I'm getting sick of it.   It was a fairly good day  until I went to pick up the prescriptions.

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