Sunday, May 17, 2015
I didn't really notice until recently that I have, apparently, such a penchant for purple flowers! I really like red too but don't have as many of those. Or I guess they just are not blooming at this time of the year.
So, I'm feeling a little better, although not totally over the debacle of that last show. I finally got in to see the rheumatologist this past Friday, after waiting on that appointment for about 6 months. Unfortunately, it seems not to have gone so well.. I could be wrong and it was just my mood talking but I don't think so really. I was hurting pretty bad the day of the appointment and then had to sit for over an hour past my appointed time because he was late. Actually, I only sat a little. I literally could not take that pain so I stood in the waiting room and in the exam room. No one seemed to notice.
I was rather amazed by it all because I've never had a bad experience at Kirklin but this one made up for all the others I guess. The nurse's aide acted like she wished she was anywhere on this earth but at work, the doctor never acknowledged being late, no apologies for the wait and had about as much personality as a washrag. I tried my best to be friendly and even joke around a little but that went over about like a turd in a punch bowl. The doc ordered several blood tests and some X-rays but told me basically, not to get my hopes up for a diagnosis. He said only about 50% of the time do these tests show anything conclusive so it was pretty much a crap shoot. That was nice although I guess it was good that he was honest about it.
The lady who did my X-rays was super nice though and that helped some.
So, I think I have pretty much given up on going to the doctor. I don't see the point of it anymore. I went this time because I was thinking that, if I ever need in the future to apply for disability, having an actual diagnosis is paramount. And, of course, I was hoping that maybe there could be some treatment besides an ablation or just something I could use on occasion for this pain. But, it appears that once you say you don't want to take steroids that they kinda just write you off. Or something; hell I don't know. No one but Dr. Nabors has ever even asked me what was I doing for pain and they are quite aware that I am in a fair amount of pain on a regular basis. Maybe they think I'm gunning for narcotics? I guess that is probably common these days but not the case with me. This doctor did seem kinda surprised that even the pain clinic didn't do anything for me or offer me any alternative besides the ablation. They did drug test me and even after finding out I had nothing in my system still did not suggest any other treatment. They did charge the hell out of me though and my wonderful insurance decided that they would only pay a fraction of it, so now I'm still paying off a visit that was basically for me to pee in a cup and talk to 2 doctors for maybe 20 minutes combined.
And please know that I am NOT ranting against the doctors (well, a couple of them I am) ; it's mainly the insurance's system of only caring about how much money they can make. I have met several really good doctors, I have great respect for those. Dr. Nabors and my gynecologist, Dr. Summers. Two great guys that truly care. But I've met some shit heads too, to be fair. They are in every profession. And I suspect that liability has gotten so that nobody is willing to say anything definitive or give you any treatment unless some test show practically 100% positive results. I also realize you don't want somebody that just blabs out everything like one doctor I went to that suggested (out loud to me) that I had everything from a brain tumor to hepatitis. But I don't see where it's unreasonable to say, well, we've ruled out all this, and it really looks like it could be this, so let's try a little bit of this treatment and just see if it helps any. Not this shrugging of shoulders, no advice and wanting me to come back in 4 weeks so they can shrug their shoulders again and charge me for it. If I could just get something to help me out on these occasional bad migraines I get I would be ecstatic.
I also realize that I may not be expressing myself correctly to these doctors to indicate my need. I have come to see that I don't always interact socially the way most people do and there could be some problem there, but I don't know what else to do.
So, that is ultimately the final straw. I simply can't afford to go to the docs anymore for not even a suggestion of help. Heck, I don't know that I could afford to go even if they did a little. My insurance company has raised my premiums the past 2 years to the point that I truly can't afford to pay for much of anything above my monthly statement. Couple that with the fact they don't fully cover many blood tests now and have stricter policies about what applies to your deductible. I used to never have problems meeting my deductible but last year, despite what all I went through, I only met about one third of it. And that's the real kick in the teeth and shows you just how screwed up our healthcare is (and how corrupt). The pain and issues with my bones and such keep me from fully working as much as I normally could at times. I don't work as much, I don't produce as much, I can't sell as much, therefore I don't make as much money. So I can't afford to pay so much for medical care that might could help me get back to where I could work as much, so that I could better afford to pay for it. Got that? What a racket!
And before anyone suggest I sign up for the new ACA insurance...I've already tried, two years in a row. They said Jack and I made too much money for me to qualify for a subsidy, which is the only way I could afford the new policies they want everyone to switch to. Which, by the way, cover less than I have now (no dental) and would raise my deductible on some of them. Nothing about our healthcare system was "reformed"; what a total joke. The only thing that changed was that now, more people get government assistance to pay for their insurance. And I'm sincerely happy that those people get help. But those of us in the middle areas are getting screwed over more than ever, especially if you are self-employed. Insurance and medical costs are just as high, if not higher, than they ever were. That is why you can literally travel to another country, have surgery or whatever treatment (and good treatment too!), hang around for a while to visit the sites and come home, cheaper than you could have it done here at home. Now, I don't know about you...but to me, something just ain't right about that.
So, that's my mini-rant I've had on my mind for some time now. Basically, I've just said, fuck it. I'll try to take care of it myself. I'm truly grateful to the 2 doctors that have tried to help but unfortunately, my issues are not their specialty. Well, Klippel-Feil is nobody's specialty! No one even knows what it is. So, I've been doing much research and am trying to go as anti-inflammatory as possible in my diet and supplements. This new doctor did mark "non-specific spondylitis" on my chart too (which I had to look for; he would not tell me), so I'm just gonna kinda go with that and assume those treatments I can do myself, like exercise and diet. I know an excellent, local herbalist who has helped me out in the past and I'll get some stuff from him too. I'm now taking about 5,000mg of fish oil a day with curcumin and MSM. There's some other stuff too but that's the brunt of it for inflammation. And I have got to get religious about my stretching exercises, which did help some and keep up my regular aerobic and weight-bearing exercise, which helps prevent bone loss. I've done real good in that regard! I'm very proud to say I've lost about 25 pounds and hope to lose another 10 maybe! Yay me! I'm also avoiding milk and most milk products, peanuts and wheat. It has definitely helped to stop the milk and we'll see about the rest.
In other news, we finally got the whole garden planted but I still have to mulch everything. I'll try to do a garden post soon. And we might have a few new additions to our flock...and maybe one subtraction!
I hope everybody our there is doing well!