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August 12 A quick updateAfter being denied for disability (first try-I knew I would be), I have the right to appeal. At the request of my older and much, much wiser brother, I contacted a disability adjudicator to help with the appeal. They're sending me a release form to sign, and then wonder of wonders, they handle the entire appeal for me. I was bowled over. I've been sitting here for a month trying to make sense of the appeal form and to better understand the process, because I thought I'd be going it on my own. And now I don't have to...glory be! I should have gotten in touch with her straightaway, but shoulda, woulda, coulda.....I have got to start getting through my brick-head that I can't do everything alone.
As this is good news for the moment (still may not win the appeal, but then you just appeal again), I am happy. For a few minutes, at least, the pressure is off me. Yippeeeee!
   Happy day, all! July 28 WhewWell, I made it. After I unburdened myself with my last posting, I managed to sleep for a little while. Since I got up, I haven't done much, but I am at least out of the bed and into the chair. And the pain has let up a little. I'm hoping it will loosen it's grip for a day or so. And if not, well then, the fight is on yet again. But I feel now as if I have a few more folks in my corner.
Thank you everyone. You've helped more than you can know.
Kat StumblingHello everyone, and thank you so much for all your support and kind comments. I've been laid up for a couple of days now, so I haven't been able to post anything. Not that my postings would be very cheerful...the pain has been pretty bad. It's 4:54 a.m., and I cannot close my eyes. I slept for about four hours this afternoon, but have been awake ever since, struggling, crying out of frustration, and stumbling with decisions. I haven't slept very much in about three days now. You see, I have some very strong medication for pain, but I'm never sure how much pain quantifies taking it. How much can I stand before I give in? Will taking one turn into taking a dozen? Does it make me weak in faith and spirit? Up until about a month ago, I refused any narcotics, until I had a week like this one, following a fall. Now that I have them, I'm afraid of them. Oh, I've had prescription pain medicine for ten years, only it was not classified as narcotic. This one is. The thought of addiction terrifies me, because I've already lost almost everything else. To lose to an addiction as well is something I cannot fight. And I fear my personality would eventually find a way to rationalize taking whatever would make this pain stop. I have learned one thing, if nothing else, out of this experience: pain can make your mind do things and have thoughts that will shock and surprise you. And right now, I'm going through what I call "mind-bender" pain. It's beyond physical into the emotional.
I'm sorry. This is a personal, emotional post made in a moment of great weakness on my part. If I've burdened anyone, forgive me. It's just that I can't call anyone at this time of night. My family worries enough, and I'll not have them worry anymore than necessary. I don't really feel like I can call my boyfriend, because I don't feel we're close enough yet to share this stuff yet. Besides which, I don't think he really wants to know. Which is not to say isn't a wonderful person in his own way; he's just very guarded emotionally, and he has good reasons. It's just too soon.
So, it's left for me to deal with, and I'm going to do that by sending all of it into cyberspace. I have a feeling it's safe there. And strangely, I feel a little better now. I almost feel as if I'm sending out a prayer, and it will be heard. I'm going to try and rest now. Thank you all for listening to me. July 24 Ah, that explains itWell, no wonder I felt strange yesterday. Around 4:00 or so, it hit.....some sort of nuclear explosion of a headache, accompanied by, ahem, various stomach ailments. I've never had a migraine, so I guess it was some kind of virus. Got so sick I didn't make my date, but he was very sweet about it. Feeling better today, although a bit washed out. So maybe I wasn't an emotional wreck for nothing after all. At least, that's my story and I'm sticking to it!
Have a good day, all
 July 11 The many faces of ironyHello all. Thank you for all your kind posts wishing me luck. I certainly will take all the luck I can get!
Now..the visit to Vocational Rehab seemed to go well. Essentially, it consisted of the caseworker giving me a brochure to read, some medical releases for me to sign, and instructions to make another appointment if I am, in fact, interested in applying for this program. Although the first meeting was fairly quick, I'm told the next one will take about two hours. I suppose I'll be tested for aptitude and possible mental state; these tests are fairly standard. I've taken them before, quite some time ago. I remember the questions on the personality test being framed in such a ridiculous manner that it was funny. I also realized immediately that this test was supposed to diagnose personality disorders, sociopathy, etc. Any good sociopath worth his salt could answer those questions exactly the way the doctors want and skate out just as nuts as ever. I do hope they've upgraded the test since the 1980s!
I may ramble a bit today, folks. It's raining here, thanks to Hurricane Dennis, and it seems to be making everything that bends on me hurt. I also have a bit of a fever going....I suppose you could say I'm "writing feverishly"....(insert rim shot here..for those of you who don't know what a rim shot is, " ba dum dum"). I was actually supposed to go to the doctor today, but I just didn't feel like making the trip. Since I'm uninsured, I drive about 2 &1/2 hours to my old doctor, who doesn't charge me, God bless him. Pretty ironic when you feel too bad to go to the doctor.
On the subject of irony, I don't believe I've mentioned that I was a ballerina as a child, up until about age thirteen. I was apparently quite good, because at the age of twelve, the instructors recommended that I be sent to New York to study at the school for the American Ballet Theatre. Yup, the big guy, George Balanchine. Needless to say, hell was going to freeze over before my parents were sending me to New York to live alone at the age of twelve. But, they knew what they were doing. You see, they could already see the effects that the pressure had on me (I was taught ballet in the old Russian style..anything less than perfection was unacceptable.). They knew I wouldn't be able to handle it. I had become almost obsessive about it, and then I almost broke. Ballet also planted the seed for a nasty eating disorder that has shadowed me throughout life. Thus ended my ballet career, although I went back a couple of times later in my teens and as a young adult for jazz and modern dance. Didn't stick with it though....jobs got in the way, or at least that's what I tell myself. I still love to dance, though.
But I digress...the subject was irony. You see, as a dancer I had complete control of my body. I could make it do beautiful and amazing things. Here's the funny part....now that I can barely walk, I've started receiving a complimentary subscription (through the salon) to a magazine called "Dance Spirit". It's filled with dancers, interviews, dance supplies....pictures of beautiful young ballerinas, filled with hope and promise, their movement displaying perfect form....sometimes, I look at them and admire how perfectly perfect they are. Other times, I throw the magazine in the trash without even opening it. Now, some might think this is a cruel twist of fate; sometimes I do. But then, sometimes I think it is to remind me that at one point in my life, I was truly good at one thing, and this is to keep me from forgetting that. And to remind me that if I can be that good at one thing, perhaps I can learn to adapt and be good at another, and perhaps many. I mean, I'd hate to think I peaked at twelve.....!
Have a good day, all.
Kat July 06 Is that a light I see?I just made a call to a place called GA Vocational Rehabilitaion Services. It appears they offer services to people like myself, who have become disabled but want to be retrained into another line of work. I have an appointment tomorrow with a genial sounding fellow named Ken who is going to evaluate my situation and see just what I am and am not able to do. From what I understand, I may be eligible for several things, perhaps even a college education. They even offer Disability Adjudication services. So, I'm hopeful, and wondering why I didn't call them sooner. I hope it goes well.
A light at the end of the tunnel, perhaps? We shall see.....
Kat July 05 MorningGood morning, all. I want to thank you all for your comments and support. I'm up extremely early today...woke up around 5:30. My body is tired, but my mind won't rest. I haven't been up this early in a while. It's nice in a way, but I hope I'm not exhausted by the time I'm supposed to work.
I'm going to talk a little about the pain. I know a lot of you out there have pain as well, so you'll be able to relate. I realized this morning that I've reached the point where the question is no longer "are you in pain?" but "how bad is the pain today?". It isn't exactly bad today, only constant. It's why I couldn't rest. What I would not give for one night of blissful sleep. Oh, how I took that for granted.
And now, yes, I'm going to talk about the monster. That's how I think of the depression sometimes. Today, it has me by the throat, sitting on my chest so that I feel as if I can't breathe. Sometimes I picture it in my head, like a black fog that's always just right behind me, sidling up around my ankles and trying to entwine me. And of course, I always have to find a way to run from it, or else it will consume me completely. But no matter where I am or what I'm doing, I know it's always there, lurking in the background, waiting for a weak moment. Some days it's exhasting just fighting it off, and I wish I could just lie down and sleep and let someone else watch over me for a while. Like today, for example...I'm so tired, and my muscles feel so weak....I can't really concentrate on anything (hence this rambling post). It's as if I'm sleepwalking while I'm awake. If that makes sense. And I have to get showered, dressed, and go to the salon to perform a head of foil highlights. For those of you unfamiliar with the process, it's where you weave out tiny strands of hair all over the head, place color on them, and then close the foil. The result is highlighted hair, very pretty. It was my specialty. Very detail-oriented work, and I took great pride in it. I loved haircolor. I guess it was my artistic medium. I used to even have shops that were my competition send me clients that needed corrective work, because they said I was the only one in town who would know how to "fix it." (Of course, I trained most of them..at one point or another, they all worked for me..I trained my own competition.) Now because of physical limitations, I find very little joy in it, and some days I even dread it. And I dread having to go in and smile and put on a happy face and make small talk when all I want to do is just lie down and sleep.
I do take an antidepressant. My doctor finally found one I could tolerate, but you still have to do some of the work yourself. Finding the mental energy to do it is the trick. I think that's what most people don't understand about depression. You have no mental energy.
Ah, but I've rambled on enough about that for now. I probably have everyone else depressed at this point. Sorry, guys! It feels good to try and explain it, though. For those who have never been seriously, chronically depressed, maybe it will give them some understanding of the subject, so that they may be able to spot a friend in distress, or just be more tolerant and understanding.
Well, it's time to get up and start fighting the monster....I don't have to be at work until noon, but if I don't get started soon, I'll be late, which I usually am anyway! It just takes me a long time to get moving in the mornings. And, sometimes, I think maybe if I put it off long enough it will go away...almost like a little kid. But, away I must..have a good day, all....
Blessings,
Kat July 03 Weekly illness update: DeniedYes, denied. I was denied disablity. I'm not surprised, because everyone told me that you're always denied on the first try. So, you appeal within 60 days, and you get an advocate or a lawyer. My favorite part of the denial statement was the sentence where they told me not only could I work, I could work at my current profession. Which is being a hairdresser. I found this laughable, and for a moment, I felt so very bitter. I never once saw a person. This was all decided through questionnaires, a phone call, and forms for my doctor to fill out. Ah, beauracracy. I wonder every day how I arrived at this position. Never in my wildest dreams did I think I would need public assistance. On a more positive note, there is a service called GA Vocational Rehabilitation. I'm going to find out what that's all about, but I think you have to be classified as disabled in order to qualify. I dream of having a job where I could work at home, at my own pace, on the computer. That would be ideal as I am often bedridden, but I could still work. I have an old laptop from my brother, and I think if I had a job that required a new one, he would probably find a way to get it for me. He is a saint.
As for the pain, it is a bit better today, and I'm thankful for that. For the last two weeks it has had a hard grip on me, so much so that I broke down and called my doctor for something stronger for the pain, after 11 years. I have held off asking for narcotics, for many reasons, addiction being the first. But the pain had a hold on me, and the depression was about to swallow me. I felt I had no other choice. What he gave me is very mild in terms of narcotics, and I took them only as prescribed. They did help some, but they kept me awake and made me nervous. And once again, there seems to be something wrong with my kidneys. Kevin (my saint of a doctor) has been watching them closely, because of some urine tests that showed I was casting off blood cells in my urine. It's like there's an infection that won't clear up, so I'm on antibiotics again, and I drink about a gallon of water a day. Which doesn't bother me, because my mouth is always so dry, I'm thirsty anyway.
I'm upset with my mother, though. I know she has good intetions and is only worried, but she made a remark that cut me to the bone. I couldn't believe she said it after watching me for the last 11 years. After finding out that I had asked for a stronger painkiller, she said that she thought I was already addicted to prescription drugs. My own mother thinks I'm an addict, even though the all the medications I have are non-addictive, with the exception of one. She apparently doesn't know how many times I wanted to reach for those bottles and take more, but I didn't. Her concerns stem from having an alcoholic mother, I think. She's afraid I'll turn out the same. But, there but for the grace of God, goes I.
Well, that's all the venting I have to do at the moment. Thank you all for listening.
Kat
June 22 Advice, please, my friends..Good morning all! I've been in bed, flat of my back for the last three days, so I haven't been posting much. but I do need some advice. It seems I've had a request asking me to talk about my illness and the depression that comes with it sometimes. I've been avoiding this topic a bit, because I don't want to sound whiny or self-pitying. I generally vent about that in my regular journal. But if it could help someone else to know they aren't alone, I wouldn't mind talking about it. So what do you think, guys? Should I bare all, so to speak, and try to put a positive spin on it? Let me know what you think. Hey Pete, I wrote a killer business letter for my boyfriend the other day...started to send it to you for a critique, but didn't know where to send it (didn't want to post it up here...Boring!) Now, if I could just find some people who want to outsource their business letters....lol! More later... Kat June 08 More whinin' and moanin'Well, I went to see yesterday if I might be able for any of the social services I've paid for with my taxes since I was fifteen. And according to the people in these places, I do not, at least not in my own county. The main reason I don't qualify is that I am childless. I think I may have said this before, but it makes me wonder how many Americans are falling through the cracks.....I think of those who are elderly, or children, or in desperate need of medical care that cannot get it. About three years ago, my sister-in-law's father had leukemia. Sadly, he didn't make it, but not for lack of treatment. He had the means to fly to Houston for a (now) fairly common drug treatment that's been documented to put several cancers in remission. Of course, even though this treatment is approved by the FDA, insurance companies still consider it experimental, and don't pay for it. Luckily, he could afford the $30,000 tab. My sister-in-law asked a nurse what happened if people couldn't pay. The nurse's answer? "They die, I guess." I didn't mean to sound so morose today, I'm just frustrated...tired, in pain, and tired of being in pain. I'll try and find a more appealing version of me next post.... K May 30 Talking about What the illness is...
Quote Well, I fear my little remission may be coming to an end. I certainly hope not, but I can feel it creeping back up on me. The fatigue, the muscle weakness....and the pain. Nothing to do except deal with it and pray. I can't imagine what it might take from me this time. I'm going to think positive and say, "NOTHING". So, guess I'll suit up and get ready to fight.... What the illness is... May 29 An amazing womanI have to take some time to tell everyone about an amazing client and friend I have. Her name is Karen Shayne. She is a source of endless inspiration to me. Karen has the gift of music, and she uses it to help provide support for cancer victims, survivors, and their families. She has boundless energy and positivity, and she's definitely one of the most special people I've ever met. You can see for yourself by going to: www.karenshayne.com or clicking on the "Help with Cancer" link on the left. Trust me, you'll be impressed! She currently has new projects in the works, so stay posted.
May 25 Talking about Talking about What Is Wrong With This Situation?
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May 24 Suggestions, anyone?Ok, I need a job where I can work from home. This hairdresser gig just isn't working out with the illness thrown in. Any ideas, anyone? Suggestions? Besides the obvious, of course.... May 23 What the illness is...http://www.merck.com/mmhe/sec05/ch068/ch068f.html Click on the above link, and this will explain to the curious what I mean when I talk about "the illness" or "the disease". Throw in some lower back problems, and there you have it!
K May 20 Having trouble dealingI'm having trouble dealing with my crap today. I'm really close to "dropping my basket" altogether. I've spent the afternoon dealing with government agencies trying to find some help for a broke 40 year old woman with a serious chronic illness. Apparently, there is none. I don't qualify for anything except--get this--food stamps. Well, that's great, but I don't eat. So, that's not so helpful. I have to find out where the insurance lobbyists are so that I can get involved to try and find health care for people like myself that fall through the cracks in the system. I had great health insurance until they raised the premium so high I couldn't pay it. Which, of course, is what they wanted. And now I'm considered "uninsurable". I'm in the process of filing for social security disability, but that can take up to two years. If I'm accepted. I'm so frustrated. Every where I turn, it's another brick wall. I can't take much more. The poor guy I'm dating is totally trying to pretend it isn't happening, because the last relationship he was in, the girl was in chronic pain. He made the statement that he spent 5 years dealing with it, and didn't want to go through it again. Who can blame him? It's so much to ask of someone. And my illness is so much more serious; I was in a small remission, but it feels like a relapse is coming on. Sometimes I wonder if the MCTD is going to take everything I have, even relationships. I've already lost almost everything. I want to have something left to hold on to. His advice was, "deal with it." Thanks, yeah, I'll give that a try. Jesus, yeah, deal with it. There's something I haven't thought of. But he doesn't know what else to say, so I'll give him credit for trying. May 14 And another thing....I'm really tired this week. The MCTD (lupus) is messing with me. The pain is better, but the muscle weakness and fatigue are rearing their ugly heads. And I can't say anything to the guy I'm dating. It is a lot to ask of someone, to date someone with an unpredictable, possibly fatal illness. He's doing fine while I'm in a small remission, but he hasn't seen a true flare yet. And I'm sure he wouldn't stick around for it. And I wouldn't blame him. God bless him, he thinks he can cure it with exercise. He's a problem-solving kind of guy. The kind that often disagrees with doctors and medicine in general. But for now, I think I'll keep relying on Western medicine. And any other thing that might help. May 05 Sigh....I owe, I owe, it's off to work I go....even though I feel like crap. Oh, but I'm not supposed to talk about "the illness". According to the last guy I dated, which lasted a grand total of six weeks, I talk about my illness too much and it's depressing to be around someone who's in pain so much. Hunh. And here I thought I pretty well kept it to myself. Guess not. so screw it, I'll talk about it here, because nobody reads this anyway! Met up with an old friend last week, and really hoped something might come of it....but I haven't really heard from him, so I guess not. Serves me right. Never should have let him get away in the first place. Stupidly, I went back to the one I ended staying with for so long, only for him to vaporize when I truly needed him. So, karma came back around and bit me in the ass on that one. Ah yes, karma....gotta love it. |
Kat
These health problems of mine are going to cost me a lot more than I thought. Two relationships so far, one 16 years, and one only 6 weeks, but it counts. I am, of course, broke, because I can't work much. And I'm so damn tired I can't even think. Okay, that's enough whining about that.|
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