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Got this in an e-mail from the Social Security Disability Coalition (see their site on my Links list). The article chronicles the situation in Buffalo, New York, but trust me, similar stories are happening all over the United States.

Social Security's slow, broken system of benefits

Poverty due to disability....ain't it grand?

Went to the endodontist first thing Thursday morning, foggy-headed and nauseous as I usually am whenever I have to get up too early. I filled out the paperwork in a daze but figured it wouldn't matter too much as it would probably be a quick consultation. There were no other patients in the office yet, so I got called in immediately.

I explained the situation to the endodontist, and he took an x-ray and looked at the tooth. He said I was already showing signs of the tooth being infected, and that since his earliest available appointment would be two months away, I should get antibiotic treatment right away, as in right that moment.

This caught me a bit off guard, but it was good in a way as I wouldn't have time to dread the procedure, so I agreed since I knew an abcess could cause me to lose the tooth. My mouth was still sore from the procedure I'd had Tuesday, so opening wide was no picnic, but I did my best. I made sure I was injected with the stuff that doesn't have epinephrine so I wouldn't have a reaction.

I kept my eyes closed through most of the procedure (it keeps me calmer), so I was a bit surprised when the endodontist announced that I had nerve/root over an inch long in that tooth! He was careful to measure a couple of different ways so that when I have the final procedure in a few months, he gets the whole thing taken care of. He put some kind of anti-bacterial stuff in the hole in my tooth and then put a temporary filling over that.

Part 2 of the root canal will be the last week of July, so I'm gonna have to baby that tooth until then. Once the root canal is finished, I'll have to go back to the regular dentist for a permanent crown. Sounds like a summer of fun for me.

Grumble.

Went to the dentist yesterday to get my right back tooth filled again (it already had two old fillings). She drilled, and drilled, and drilled, and then her eyes opened very wide. I'd seen that look on other dentists' faces, and it knew it did not mean good news.

It seems my tooth had decayed all the way to the root, which is now exposed. I had two options: root canal, or extraction. With Sjogren's, my extremely dry mouth would make implants or dentures difficult, so I chose root canal in order to save the tooth.

So the dentist put a temporary crown on, warning me that the tooth would be even more sensitive than it was before until the root canal is done. I called an endodontist, and was lucky enough to get appointment for a consultation tomorrow as someone else had cancelled. The endodontist will figure out what all needs to be done, and then I'll make an appointment for the actual root canal, and THEN I'll go back to the dentist to have a permanent crown done.

Sigh. This is the third time in three years that I've had this happen. I'm hoping like crazy I won't need any further work this year other than that tooth, because this is gonna max out my dental benefits for 2007.

I had Dan buy me some gluten free soup, yogurt, and more cream of rice and eggs so I'll have something soft to eat when needed. My jaw is already plenty sore from yesterday's procedure. Yikes.

Guess I'll just have to grin and bear it.

Posting the link to "A Hummingbird's Guide: What M.E. Feels Like" (see the entry below this one) gave me an idea. Since I once again am fighting for disability benefits, it might behoove me to have handy a detailed description of my own cognitive and neurological symptoms, particularly in light of the fact that I have trouble articulating them when asked. It would probably also be a nice addition to my fibromyalgia website.

Thing is, my long-term disability insurance company could drop my benefits any day now, and I'd like to have at least a laundry list of symptoms together before I submit an appeal, which means I'd better get on it. Considering some of my blog entries take me about three days apiece to compose, coming up with a finished detailed account of how my body and brain malfunction could take a couple of months. But it could very well be worthwhile because even if it doesn't help my disability case, it could be educational for people with chronic illness or those who want to learn more about it.

I do intend to post the results here as well. It will be good mental exercise for me as I've been so pre-occupied with unpacking, finding docs, getting acclimated, etc. that I haven't written a single article for But You Don't Look Sick since I moved. I hope to get back to regular article writing by the end of summer.

In other news, I've unpacked all my vinyl and probably half of my music CDs and audio cassettes. One of my storage units didn't survive the move, so I'm going to try to squeeze the rest of my tunes onto a set of shelves not really geared toward audio cassettes. If they don't fit, I may have to cave in and acquire another unit cheap.

Our 30 year old constantly leaking toidy is getting replaced Friday afternoon. I'm a bit cranky about the expense, but since we're converting to one of those new-fangled low water turlets, the city of Sioux Falls will actually reimburse us $75, which softens the blow a bit. I just hope the 25 year old air conditioner survives the summer because we can't afford to replace it now.

I get to have a crown installed tomorrow afternoon. These things always hurt like a son of a bitch, one of the joys of Sjogren's/fibromyalgia/chronic myofascial pain. Guess I'lll be having yogurt for supper.

My brain is suddenly without coherence again, so stopping here.

Have gotten a few things in e-mails the past few weeks that I've been intending to pass along. The first is from a chronic fatigue syndrome newsletter. It's about the brains of those with the disorder, utilizing the amazing fMRI.....

Neuroimaging Tracks Mental Fatigue in CFS

Next is the first-hand description of symptoms of someone with myalgic encephalomyelitis. The page is extremely lengthy, but part two is definitely worth taking some time out to read. Those of you with the disorder will be nodding in agreement, while those of you who are healthy will be shocked at just how debilitating it can be....

A Hummingbird's Guide: What M.E. Feels Like

Am hoping I can find enough energy to do some unpacking this weekend. I just want to get it over with. I'm tired of having that part of my life on hold.

Ok, maybe the last line of my previous post was a litle harsh. I don't hate EVERYTHING about living in Sioux Falls, just mainly the rheumatologists, the religious fanatics and the hypocrites, heh heh. I do find many good things about living here, and will at some point do a post about that.

But for now, I'm popping in to describe the latest crises that have kept me from blogging regularly. Never mind the unpacking....I haven't even had the time or energy to do any of that for a week and a half. Of course, another major surge of autoimmune fatigue is not helping things.

A few days before my last post, I went to a new dentist for a checkup. This is no big deal for most people, but it is nerve-wracking for a person with Sjogren's syndrome, fibromyalgia and chronic myofascial pain. It is actually quite a challenge to find a dentist who:
a) agrees with me that my tooth decay is from Sjogren's and not from poor dental hygiene
b) doesn't confuse my adrenaline reaction to novacaine with a panic attack (I'm not prone to panic attacks, ever)
and c) will use the utmost care to not aggravate my jaw muscle trigger points.

Anyway, the dentist seemed nice enough, but it was bad luck that I have yet ANOTHER decaying tooth requiring ANOTHER crown (I've already had this tooth filled twice). What's worse, the crown that broke last year no longer lines up with the tooth behind it, which is causing some of the sensitivity and trigger point activity I've been experiencing. AND one of my other crowns was done improperly and may need to be replaced!

The dentist fortunately realizes what an ordeal procedures are for me and is going to try a simple fix first. She is going to make a crown for the decaying tooth that is a bit odd shaped to try and close the enormous gap between that tooth and the broken crown. She'll only replace the other two crowns if I continue to have problems with them; it is possible the pain I'm experiencing in my other teeth is fibromyalgia-related, so fixing the tooth we know is the most likely culprit may get things to settle down (hard to explain, but it actually makes sense to me).

So I get to go in for the first (and I hope only) crown on Tuesday. Expensive sucker, especially since Dan had gum surgery last week and probably needs at least one more in the future. But keeping my teeth would probably be a lot less painful for me than having them pulled and trying to wear dentures in an extremely dry mouth.

I got a most unwelcome piece of mail Thursday from my long-term disability insurance company. I was expecting them to review my claim in August, but no, they want to do it NOW, before I've had a chance to find a competent rheumatologist in Sioux Falls! They sent paperwork requesting info on all current docs and meds.

In a panic, I called my lawyer. He said I didn't have time to find a new doc, that my best bet would be to go back to one in Denver that I already know is supportive. I was really hoping he wouldn't say that as my health insurance won't cover any docs outside of Sioux Falls, but I'm smart enough to know he's right, so I called the office of the rheumatologist that diagnosed me seven years ago and secured the first available appointment, which is June 19.

Unfortunately, plane fare from Sioux Falls to Denver is OUTRAGEOUS! But I haven't any other way to Denver as Dan does not have time off. So I coughed up the dough and am steeling myself to have to come up with several hundred more dollars for the appointment and associated tests.

The good part is that I'll get to see my family and Denver, both of whom I have missed. I can consider this to be my vacation for 2006, 2007 and beyond. Luckily, my dad has offered to let me stay at his place, and I think I can bum rides from family members to/from the doc and the airport, so that should save me some bucks.

Assuming my long-term disability company doesn't cut me off before next month, I should be able to fulfill their requirement of current documentation from a credible medical source. I still expect them to deny me of course, but they'll have less of a case against me with a board-certified reputable rheumatologist vouching for me. I will, however, ask him for a referral to someone closer to Sioux Falls, like Omaha or maybe Minneapolis, because it would be less of a financial strain to see someone there.

So let this serve as notice to my readers in Denver that I will be there from June 17 to June 20. Don't know how many people I'll be up to visiting, but I should at least be able to make some local phone calls. If nothing else, I'll get an opportunity to re-read "Harry Potter and the Order of the Phoenix" before the movie comes out in July.

In matters other than medical, it seems Dan and I are hemmorhaging money at present. We had already committed to putting in a backyard fence and Dan's first gum surgery prior to finding out about my need for dental work and the unexpected trip to Denver. Also, the toilet needs to be replaced as it is leaking so much that it is causing flooding downstairs.

I'm hoping that I have budgeted well enough to take care of both the planned and the unplanned expenses. It's still gonna hurt when the long-term disability company cuts me off, though. The amount I was getting each month was enough to cover groceries, utilities, car insurance and gasoline.

Sometimes the best intentions go awry.

Ok, in March, I received a letter from the Sioux Falls rheumatologist I saw in January telling me that one of my Denver rheumatologists had convinced him that I did at least have "probable" Sjogren's syndrome based upon symptomology and a positive lip biopsy. So I decided that I would go back to this doc because at least he wasn't demanding that I re-do the biopsy and insisting that going jogging was gonna cure my fibromyalgia like the doc from the second Sioux Falls rheumatolgist's office. But then, a few weeks ago, I got another letter in the mail stating that the Sioux Falls doc I had gone back to was leaving medical practice and that I could become the patient of the other rheumatologist in that office.

I called the office soon after I received that letter to see if I could get an appointment with the partner. I was told he was booked for the next SEVEN MONTHS! But they said I could see his physician's assistant right away, which I did yesterday.

Since the rheumatologist who had left had complained at my previous appointment that my medical records were incomplete, I brought with me records from no less than eight of the docs I had gone to in Denver. I needn't have bothered copying all those pages because the PA (physician's assistant) didn't even glance at them yesterday. She also completely ignored the summary of symptoms I handed her.

Mainly, she just wanted to know why I was even there. I told her that I needed to have current medical records available for my long-term disability insurance company and that Social Security would be expecting documentation from a rheumatologist when they reviewed me even if I wasn't doing any new treatments. She said that was absurd, which I don't disagree with.

But then she dropped a bomb on me: she stated that her office had a policy of not supporting disability for ANY fibromyalgia or Sjogren's patient! Shocked, I asked her why. Her answer was that neither ailments is EVER disabling!

I got really flustered, but managed to blurt out a question: "And how do you suggest I become NOT disabled at this point?" She said that no fibromyalgia patient is ever disabled as long as they follow a proper "program". When I pressed her as to the nature of this "program", she said it involved exercise and sleep management.

Trying to stay calm, I told her that I had been following just such a "program" for most of the past ten years. I explained that I go to a prescribed exercise class three times a week and went to a sleep management specialist for a year. I went into detail about my sleep regimen, the medications I had tried and the periodic limb movement disorder, but her only comment was that Ambien CR wasn't a very good medication (I agree, but my new insurance won't cover anything else).

I said, "Well, then what about the Sjogren's?" She sorta sniffed and replied that I couldn't be very sick since my antibody levels were normal. Great....another medical practitioner who doesn't believe in the existence of sero-negative Sjogren's, despite the wealth of medical records sitting right in front of her documenting a patient who is not only moderately ill but also disabled!

In my most patient voice, I described how severe autoimmune fatigue greatly interferes with my life every single day. I told her how cognitive dysfunction keeps me from efficiently performing even the most simple mental task. I started talking about the neurological problems, but she cut me off, repeating that her office would not support me and suggesting that I go back to my primary care doc, who is not an MD but a DO and thus won't be considered credible by the LTD company or Social Security (which is not fair since she's actually a better doc than the clowns that pass for rheumatologists here).

So THIS is the best rheumatologist Sioux Falls has to offer (I was told this more than once)?? What, did I turn a corner somewhere along the way and end up back in the year 1985?? So I'm supposed to believe that no one besides me in a city of 150,000 people who has fibromyalgia or Sjogren's is disabled?

I realize that rheumatology offices are free to discern which patients they will and will not treat, that some actually won't even take fibromyalgia patients. But their ridiculous blanket policy clearly violates the Hippocratic oath. I wonder how many fibromyalgia patients they've made worse by insisting that all they need is exercise and good sleep habits?

There is no fibromyalgia or Sjogren's support group here. Insurance won't cover any docs outside Sioux Falls, and I can't drive more than an hour to see one anyway. It's incomprehensible to me how a city that so prides itself on its health care excellence can't come up with a single competent rheumatologist.

I'm very discouraged. I'd just give up on the whole specialist thing except that the long term disability insurance company is discontinuing benefits next month and will expect current medical records when I appeal. I've engaged the services of a lawyer since the LTD guys are in violation of their contract, but there is no substitute for the support of a rheumatologist for Sjogren's/fibromyalgia patients in these cases.

Do these docs not realize how demeaning it is to go and admit you spend every day of your life unable to do anything productive? That I'd do almost anything to be self-sufficient again and not have to rely on the judgement of the medical profession, the government, greedy insurance companies and a society that looks upon me as lazy?? That I wouldn't have even needed to leave Denver if I'd been healthy enough to take a buyout from my employer in 2002 and find a job I really loved?

I hate living in Sioux Falls.