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Thread: Open the flood gates... (REALLY long, just ranting really..)

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    Default Open the flood gates... (REALLY long, just ranting really..)

    I didn't really know which board this fit on... Sorry this is so long... I knew once I started it would be hard to stop... You don't really have to read this, it kinda just felt good to write it all down...

    I've always been heavy. Okay, understatement, I have always been obese. At my heaviest, I was 320 lbs. So, last year, I started on the Atkin's diet. This was a miracle for me! I could stick to it, I was losing weight, I stayed motivated... It was AWESOME!!! I started in February and by September I had lost 70 lbs. It was at this point that I started to plateau. For anyone who's ever tried losing weight, you know that's pretty normal...

    So, for three months I was hovering around 250 lbs... Finally, I just said "Forget it, I'll stop for the holidays and be re-motivated with the New Year!" This was in November. About two weeks before I went off my diet, I started noticing that my ankles were swelling. I had never retained water before, so this was kinda weird. But, it came and it went, so I chalked it up to getting older and typical female stuff. Didn't think anything of it, really...

    Cut to January. At this point, it wasn't just my ankles that were swelling it was my whole legs. Both of them! And I KNEW it was just water weight, because of how it displaced. I could sit with my leg up on the corner of my desk and in 15 minutes I'd have a perfect indent of my desk corner. I was going back up in my jeans size and I was sleeping... A LOT. Now, I'm a natural born insomniac, so, when I am literally sleeping my weekend away, something has to be wrong! But, again, I just chalked it up to getting older and needing more sleep. And, I really wasn't doing a great job getting back motivated to lose weight, either. About mid-January I also got this chest cold... No big deal, everyone else was having major respiratory issues at that point too, so I figured it was normal and would just go away... (I typically don't DO doctors)

    Fast forward to the beginning of March. My cold STILL wasn't gone, but it was getting better, and by this time, my legs had swollen so much that they were literally LEAKING water out of them... That CAN'T be a good thing! Since I am a soul singer (hence the moniker) in a blues band, the fact that it was taking this cold SO long to go away was bothering me, too. So, I went to the clinic I had been going to since I was little to gain some insight...

    Upon seeing me, I was told that I had a sinus infection and we'd have to run some tests to see about the swelling... Cool. So, she gave me an antibiotic and a diuretic and took a urinalysis... The urinalysis came back too cloudy to read, (Which I later found out was an overabundance of protein in my urine) so, when I went in for the small blood test that she wanted me to take I was also supposed to get another urine sample. I wound up doing three urinalysis' all too cloudy to read. The results from the small blood test, I was told, basically said my kidneys and liver were fine, nothing to worry about, but I needed to take a full CBC to get further results. I waited a month until I could go to the local health fair to get my CBC. All the while this "sinus infection" was getting better, then worse, then better... Never FULLY going away, just going away enough so that I had some hope... (Now, my band has been working on our first CD, so we weren't scheduling gigs really, but we had one the beginning of May and it was coming down to everything on the CD was done, or close to done, except for me...I wound up missing that gig, because three days before my voice completely crapped out.)

    I FINALLY got the results of my CBC in mid-May. Still suffering from a "chest cold", that now literally felt like I was coughing up chucks of my lungs, (sorry for the graphic image) she told me to take sudafed and gargle with Listerine... "If Sudafed was WORKING, why would I be calling YOU?" So, she gave me more anti biotics, which helped, but it didn't go away...

    The results of my CBC said I had way low Albumin (1.8, when normal is 6.5) my Creatinine was in normal range, my blood sugar was fine, my total protein was way low, My iron binding capacity was way low, my calcium was low, my cholesterol was WAY high, my thyroid was a little off, and everything else was fine... She called me into her office worried about the calcium and cholesterol... I found it puzzling that all this protein stuff would be low since I had been on Atkin's for so long, you'd think it would be too high if anything, right? Well, when I asked her about that, I was told that my protein results were "diluted due to the water retention"... So I was thinking: Well, then wouldn't ALL of my results be diluted? But, she's the doctor, she knows what she's talking about, okay...

    So, she put me on cholesterol meds and thyroid meds and prescribed me compression stockings for my swelling because according to her my kidneys and liver and heart looked fine. If I wanted further diagnosis I would need to get an ultrasound and echo-cardiogram and this and that and the other. But, it wasn't imperative that it happen right away because everything looked fine. But, she also wanted me to start a walking program. I was thinking: A WALKING PROGRAM???? I can barely walk to MY CAR outside my apartment!! My legs don't bend and I can't breathe, and you want me on a WALKING program!?!?!?!?!?!?!?!? RIIIIIIIIIIIIIIIIIIIIIGHT!

    So, June rolled around, I ordered my custom compression stockings, (from Germany because "American looms don't accommodate such large sizes") and waited three weeks for them. While I was wearing them I could move a LITTLE better and the water was being pushed up, (I had it in my arms, hands, and torso.) But, it really wasn't being pushed OUT, and when I wasn't wearing them the swelling didn't really go away, it was just kind of replaced. Sometimes, it got worse. But, my legs didn't hurt CONSTANTLY anymore, though, it was getting harder to breathe. Again, my chest cold was clearing up, so I was trying to get into the studio to get working on our CD. But, it still wasn't COMPLETELY gone. After two weeks of wearing these compression stockings, they developed a run and I had to send them back. This was two weeks before our next gigs. (we had two in one weekend)

    So, by the last week in June, I had put down some tracks on the CD that were passable, and it was looking good for these gigs that we had the following week. (Which was a good thing because after six months, the band was starting to look for a new singer) I couldn't walk, I couldn't bend, I couldn't move, and when I did move, I couldn't breathe! I was miserable and miserable to be around! I was walking like the Stay Puft Marshmallow man, and it HURT not just my joints, but my back, and every muscle and bone in my legs. When I would wake up in the morning, I'd have to walk on my toes, my heels hurt so much.

    The Tuesday before our gigs, my voice died again. Now, for me, singing is LIFE!! If I can't sing I may as well not be breathing. And, I LOVE my band like family. So, the thought of losing them sent me even further into depression than I was, because I felt like crap and couldn't sing... And, no one could TELL me anything...

    I called my GP and told her this was ridiculous there had to be SOMETHING that she could do, or a specialist she could recommend for EITHER problem. She referred me to an ENT guy, but said for my swelling I'd have to go in for the echo and the ultrasound and the blah blah blah... Not even a place to START! Not that I should have been surprised, since this woman lost my chart 3 times in the 4 months I had been seeing her, and never DID find my chart from when I was a kid and teenager going there...

    I missed the gig we had that Friday night, so that I could sing at the three hour paying gig we had the next day. Which was outside at a car show in 90 degree heat.(ahhhh hind site) By the end of the gig I was in so much pain I literally couldn't walk to my car. I always try to help the guys load their stuff but, I couldn't even get up to roll my own microphone cord. My mother brought my car to me and I could barely get in it. Everyone told me I looked like I was about to pop, and that's how I felt! I was half tempted to go to an accupuncturist and go stand on the grass and when they took the needles out, start watering the lawn!!! That was also the day of my grandfather's birthday party. So, after the gig, I went to my mom's house for that, I sat down and put my legs up and slept for three hours. Even after resting the rest of the night I still hurt too much to walk to my car.

    The next morning my mom took me to the emergency room. It started out looking like they wouldn't help me because I wasn't technically an "emergency" situation. But, after running one simple blood test and taking one urinalysis, they told me they were checking me into the hospital because I had something called nephrotic syndrome, which they said meant I had no protein in my blood. (This was AFTER they tried to find a vein to stick me in and water came out instead of blood!) Oh, no protein... That explains why my hair is falling out! They also did a chest x-ray finding so much water around my lungs they were surprised I could breathe at all.
    It amazed me that running the exact same tests these people knew I had something wrong with my kidneys, when my GP said they were fine, and she wanted me to take Sudafed. This is when the rage started, along with the fear... My own DOCTOR almost killed me! As if I didn't have ENOUGH trust issues...

    I had never been in the hospital before, in fact, I had always been a very healthy person, even for being a fat girl my whole life. I was always in pretty good shape, always had energy, very rarely got sick, and when I did, I healed quickly. The thought of staying in the hospital scared me to no end! I was in the hospital from Sunday to Friday. This was a teaching hospital, so I had CLASSES of people in my room all the time. That part didn't bother me, I wanted to learn as much as they did. In fact, they let me sit in on some of their discussions. It was really neat. They did the kidney biopsy on Tuesday afternoon and by Thursday morning they had a 99% positive diagnosis. I was AMAZED at how little time it took...

    Since getting out of the hospital a month ago I've lost 82 lbs. That's over ten GALLONS of water, and there's still some to lose! I am smaller now, than I was when all of this started. In fact, I haven't weighed this little since I was in middle school. This is the biggest positive in my life right now, aside from the few friends that I can count on. The only problem with it is, now that I CAN move, I WANT to move all the time, and I KNOW I am constantly overdoing it. "Over expending my spoons" as my best friend would say...

    Since my diagnosis, My life has been in shambles. I feel like I can't even function properly in the world anymore. Since I got out of the hospital I feel like I haven't stopped. Seeing this person or that person so that they can see I am still kicking. And it's wearing me out. I'm not in any real physical pain, but, I'm light headed almost all the time, I shake almost constantly, and I am continually tired. For months I've had no grip strength, but I figured it was because of the swelling, but, the swelling is gone from my hands and I feel weaker than ever. I have no memory anymore, and suddenly I am having vision problems. Though, thinking back a few months, I've been having some vision issues for a while.

    I hate every single part of this. From the pills I have to take, to the fact that I'm reacting so horribly to this. I have so much pure unadulterated RAGE about this, it scares me sometimes. And then there's the fear, somedays, I feel like a small child who's afraid of the dark... In my head, I KNOW that I shouldn't be scared... That mommy and daddy are just in the other room, should anything happen... And, that the monsters in the closet don't really exist... Yet, the overwhelming desire to bury myself under the covers, consumes me...Some days I feel almost crippled by it. I can't help thinking about the possibility that if I make one false step, I could die... Or if something doesn't work the way it's supposed to... buh bye...

    I have no control of ANYTHING anymore... Not my health, not my schedule, not my mind, not my emotions, not ANYTHING... And I HATE it!! I HATE that I know my way around the hospital as I do. I HATE asking for help. I HATE that I am constantly thinking "Oh, he's coughing, I better stay away from him" or "Oh no, I can't be out in the sun." or "If I lift this gallon of milk off the top shelf, it will kick my butt for the rest of the day." My attitude has gone down the drain about everything. Someone opened a door for me the other day and the first thing I thought was "You wouldn't have done that a month ago when I looked like the Michelin man." I cry all the time, and when I'm not crying, I'm screaming. And when I'm not doing either of those things, I'm holding it in until I'm NOT at work or around people...

    I ABHOR the words "sick", "illness", "disease", "condition"... So, when I talk about it, (if I talk about it) I say "I have this THING, and I don't feel well." Which means :"I'm sick and I have a disease." It doesn't REALLY help, but, I pretend it does...

    I work in my family's diesel truck repair company under my older brother, and he doesn't seem to get that I can't just "get over it". And he doesn't even know how hard I am taking it. He has me going at this pace that I SHOULD be able to work at... But, I forget things, I space things out, I think I've done something, but I really haven't, and I break down eevery timehe "talks" to me about it. I am SO SICK of hearing "get over it". He thinks that EVERY WORD out of my mouth is an excuse, so I can't tell him ANYTHING. I almost hope that when I'm so light headed I will faint in the middle of the shop, so that he knows how serious this is. For most people, I keep the brave face on. But, when I'm constantly being yelled at for things I feel I have no control over, I lose it... and then I'm just a whiny girl. And he wonders why I don't talk to him...

    Frankly, none of that matters. I just want my life back. I'll even go back to being 320 lbs. JUST to have my life back the way it was. No doctors, no pills, no hospital visits, no worrying about what I'm going to do since I have no insurance, No being afraid that if I catch a cold it could kill me, No being afraid of dying...

    And now, they want to run a CT scan to see if the Lupus is affecting my brain, because of my vision problems and grip issues... As if I wasn't scared enough, right? Something has GOT to give, and I think it may just be my sanity!!!

    I scream, and I cry, and I rant, and I rave, and I throw temper tantrums, LITERAL temper tantrums!! You'd think that letting it out like that would GET IT OUT! Noooooooo!!! With every fit I throw the rage or the fear or the sadness or the loneliness or whatever I am feeling at that moment, is just replaced. Sometimes, it comes back stronger, and it won't go away, and I don't know what to do!!!!!!!!!!! Some days, it's almost to the point where I want to say "FORGET IT!! I DON'T NEED THIS LIFE ANYMORE!!!!!" I am constantly saying "I'm done with this already, I want it over" And it JUST STARTED... How do I expect to live with this for the rest of my life???? I just don't think I'm strong enough to do it...
    Some days I just want to punish my body for what it's doing to me. I always knew I couldn't count on people in general. The one person I could always count on was me. I didn't need anyone, I could take care of myself. I mean, no one else was going to. But now, all of a sudden, the one thing I COULD count on is trying to kill me, by attacking itself. Maybe that's why I feel so alone... So lost... I always knew that people would leave... I never really thought that I'd wake up one day and find even I'm gone...

    Now that I've written a novel... I should probably shut up now... If you read this whole thing, thanks, you deserve a metal!!!! LOL!!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Default With Ya

    I'm with you on almost every point - except I'm a horrible singer.

    You know what gets me riled most these days? It's when people try to be "helpful". Your brother falls into that category. So does my boss who apparently knew a girl with lupus once at school, so now he's the authority. Or my beloved niece who tells me that she looked it up and it's just arthritis and her grandmother had arthritis but this faith healer cured it - so I'm sick because I have no faith. (I can't argue on that point, I am relatively faithless at this point) Or my supervisor who wouldn't even look at the information I sent him - and then he finds out he's sick with something else and overcompensates by sending me every article on lupus he can find - highlighting the rashes and telling me which ones look most like mine.

    They're all lovely people really. They'd be even lovelier with their mouths sewn shut and their computer keyboards...in a physically impossible place.

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    LOL!!! That's great! But, just their keyborads? I wanna take his WHOLE COMPUTER and cram it up there!!!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Gosh I know how you feel.

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    Thanks Amanda!

    I was surprised I actually put all that out there... It took me three whole days to decide I was going to try and write this thing and then once I did, it took me forever to actually press the button to send it into cyberland... I'm actually kinda surprised anyone actually read it, since it's SOOOOOOOOOOO long... I just kinda started and couldn't stop... Just like I seem to be doing now... GOSH I babble a lot lately... is that a Lupus thing???? LOL!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    I think a lot of people can relate to some or most of your story. Thanks for putting it out there.

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    Default Not that long

    Your post isn't really that long, and I found it pretty compelling because I knew that frustration at a bone-deep level. Plus, the writing style was very good! How does it feel now?

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    Thank you.... I'm actually really surprised how at home I am starting to feel here... Wow... Me... Talking to a bunch of people I don't know... Who woulda thunk it?

    Thank you for listening and being so helpful!! It actually is kinda nice to know that I'm not totally insane... And that other people can identify with what I've been going through...

    If you all can handle it, I'm sure you'll be hearing more from me!

    Thanks again...
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Hi Solesinger;
    Well, I feel as if you've related all of our Lupus stories. Somewhere in there was a symtpom, an incident or an emotion that we all have had.
    I have to agree that one of the things that angers me the most are those people who know nothing about Lupus, but who feel that they can tell us to "Just Get Over It"...those are the ones that I have visions of slapping the stupidness out of their mouths. They rank right up there with the ones who say "Well, you don't look sick?" Aaarrrgghhh!!!
    I, too, am a singer and, like you, singing is my life! However, due to other illnessess that I have acquired in my old age (on top of Lupus), I finally had to make the decision, this year, that I had to give it up. That has sent me spiraling into a state of depression. But, I did get to complete three CD's, sing on television and have my music played on the local radio station!! But, I miss it terribly!
    It is quite ok to rage, vent, cry and get it out here! You will find that there is no emotion that you go through that someone here has not felt and, at the very least, empathize with you and offer you some comfort.
    Your ordeal with your doctor was so much like what my daughter went through. Their failure to help her was because they kept saying that she was too young to have the symptoms she was having and they kept telling her to go home and take this, or take that!! By the time we got her to another hospital and a diagnosis was made, she was critically ill! So, I can definately understand your rage because I go there each time that I miss her and I miss her often!!
    Feel free to join us here! We want to give you as much support as we can!!
    I wish you the very best!
    Peace and Blessings
    Saysusie

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    I had to LOL at your hospital experience, SoleSinger, with the classes coming around and observing you. When I had to go to Detroit Receiving's emergency ward (for what was later diagnosed as a Lupus-induced stroke), there was a constant parade of interns and classes making the rounds. I finally hiked my sheet up under my chin and yelled "What is this, a glass-bottom boat tour?!"

    Your brother's reaction is typical - most of us have family members who are sympathetic but don't quite "get it" - they think that we can rub some dirt in this and walk it off. I've had central nervous system involvement with my Lupus and I know how frustrating the complications can be. Please try to hang in there - and always feel free to vent on this board! We're all in the same boat!!

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