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View Full Version : Open the flood gates... (REALLY long, just ranting really..)



SoleSinger
08-17-2005, 11:07 AM
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!!

Katalanta
08-18-2005, 06:38 AM
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.

SoleSinger
08-18-2005, 07:32 AM
LOL!!! That's great! But, just their keyborads? I wanna take his WHOLE COMPUTER and cram it up there!!! :D

Amanda109
08-18-2005, 03:05 PM
Gosh I know how you feel.

SoleSinger
08-18-2005, 03:27 PM
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!

hippimom2
08-18-2005, 03:30 PM
I think a lot of people can relate to some or most of your story. Thanks for putting it out there.

Katalanta
08-18-2005, 03:47 PM
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?

SoleSinger
08-18-2005, 06:02 PM
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...

Saysusie
08-19-2005, 03:08 PM
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

Ouisch
08-19-2005, 09:01 PM
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?!" :mad:

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!!

SoleSinger
08-19-2005, 11:15 PM
Saysusie~

Thank you for replying!!! What type of music do (or did) you sing? I'd LOVE to hear something! Also, if it's not TOO personal... May I ask WHY you had to decide to stop singing? Was it complications with your voice, or just an energy issue or..?? And HOW do you do it? I wasn't able to sing for six months... I got to the point where I didn't think my voice was going to come back... And to be quite candid, I was seriously considering suicide... Because singing is all I really know, and do WELL, and without it I have no joy, no ambition and definitely no strength... It's not only my craft, and my instrument, but it's my escape as well... As I'm sure you understand... HOW do you manage, and is this something to look forward to in my future?

I am extremely sorry about your daughter... I'm sure your rage is MUCH deeper than mine... I know mine would be if it was my child... (No, I don't have kids, but if I did...)

Thank you again, for your response, and for this board... To my surprise, I definitely think I've found a "home" on this board... I guess I have to go thank my best friend for finding it for me, too...

SoleSinger
08-20-2005, 05:22 AM
Ouisch~

LOL!!! I didn't mind the classes of people too much... I figured, as long as they were learning about this "mystery thing" that was going on with me... (Apparently I was the talk of the hospital because my condition was so "unusual") they could teach me, too! And, really, I was glad that they were learning from my experience since my GP dropped the ball so badly... Now, if any of these students see this again, they'll remember me, and know a direction to go in...

I was also wondering, if I may ask, what kind of symptoms do you have with lupus in your nervous system... I'm starting to feel like I'm freaking out over everything, so, if the symptoms I'm having really aren't related, maybe I can stop feeling like a hypochondriac!!! LOL

Thanks for replying!!!

Saysusie
08-21-2005, 10:06 AM
Hi Solesinger;
I think that in the icons above, there is one for Music Online, you can hear a small porition an original piece that I did, written by the administrator of this forum, called Agnus Dei - it is a duet with a very dear friend of mine. It is a classical piece, but I am a smooth jazz and ballad singer.
I cut a CD in honor of my daughter which is very ecclectic (because she loved all genres of music) that can be purchased online at Songpeddler.com; The proceeds all go to the Lupus Foundation. I have two other CD's that I have not put on Songpeddler yet!

Now, to the reason that I've stopped singing -
I developed cancer in my thyroid which required surgery to remove it. My voice returned, but it was not my voice and I lost the strength that I once had and lost my range. I think, solesinger, that what really happened is that all of that caused me to become very depressed and I lost my joy for singing! Once the joy is gone, nothing seems worthwile. So, I continue to turn down gigs, I boxed up my equipment, quit my voice lessons, stopped going to the studio and just stopped singing!!
I have not sung a note in 3 months (as a fellow vocalist, you know that this feels like it's been a year!). I know that, since I am no longer using the instrument, the longer I abstain, the better the chances are that I will not be able to use it! It is a catch 22, but I am so depressed right now and have been missing my daughter terribly, that I don't care much about anything anymore!
So, that's my story :cry:

Sorry it was so depressing

Saysusie

Katalanta
08-21-2005, 04:02 PM
SaySusie, I am so sorry for your loss.

I hope you won't mind if I share one of my stories, which is along the same lines. I had kind of the opposite happen - I used to play piano, went to a rather celebrated school for classical piano, and was one of those who didn't really practice because I was playing for hours on end every day. It was absolutely my joy, my voice and my escape. Then my mother - I loved her deeply, but she was mentally ill and we had a complex relationship - shot herself in our basement.

It's been over 20 years since then - I still have the piano she bought for me when I was 5. During the last decade or so - once or twice a year I get the urge to play and I fumble my way through some scales and exercises. If it sounds ok, I actually try to play a piece or two. I get discouraged by how clumsy and incompetent it all sounds. And instead of being my voice and my escape, my silent piano is now just a very sad souvenir. It's been through earthquakes, fires and floods - the front legs are busted off and I haven't gotten around to fixing the borken pedals or having it tuned. The paint on it chipped (it was white with gold trim) so I got the idea to refinish it - but lost energy and interest about halfway through. Needless to say it looks battered and bruised and when people comment about it I usually laugh and say it's the physical representation of my soul.

Anyway, after all these years my refusal to play is still about grief and anger over losing my mom. Somewhere in my heart I know she's listening for it - and I still can't find the strength to play for her any more. Maybe if the plaquenil and DHEA give me back some of my long-lost energy, I'll find my way back to it. At least now I have some hope for that, which is more than I've had in a very long time.

SoleSinger
08-22-2005, 08:10 PM
Wow...

How do you do it? I mean, I understand not having the joy to do it... I've experienced that... But, never for long...


But, how do you LIVE without it? Because honestly, I feel that if it weren't for the music... I wouldn't be here...

My father plays guitar... Or I should say played guitar... He stopped about a year ago... Mid-life crisis or something... I don't know but, he used to play for hours everyday... Just for himself even... And now, he might pick up his guitar for about 15 minutes every two months... His once calloused fingers are now soft, and his beautiful guitars are dusty and hanging on the wall like some sad musical cemetary.... It makes me sad...

Katalanta
08-23-2005, 06:22 AM
Hey Sole!

It's the funniest thing - I haven't actually given up music, I've just stopped playing piano. I've kind of switched instruments to the one I am absolutely worst at. Sometimes I'll be sitting somewhere lost in thought and suddenly realize I'm singing out loud and have been for quite some time.

Singing is something I'm just not talented at, but it's become this kind of release valve. I had this one job years ago where I had to clean up the coffee cups for the rest of the staff every night. I hated that aspect of it. And this one night I was washing the cups and had no idea I was singing until the department receptionist stuck her head in the kitchen and said, "Girl! I can hear you in the lobby. You can blow!"

I'm not a good singer, but I am quite loud. :-D

I've been singing less lately. The fatigue just gets me and I can feel the a weak sort of urge to open my mouth but I can't even muster the energy to hum. For this, the neighbors are deeply grateful.

Saysusie
08-23-2005, 10:18 AM
Hi Katalanta and Solesinger;

Katalanta - I actually could feel your loss and you pain as I read about your mother. Even though it has been 20 yrs for you (six years for me) - it still feels as if it were yesterday. I still wake up most mornings crying for my daughter as I know you cry for your mother!

Solesinger - Going without music for such a long period of time only happens because the joy is lost. Katalana and I both seem to have lost our joy and our inspiration. Like I said, once the joy is lost, there is no more meaning in it for us. You have not lost your joy and I pray that you never do. I also pray that you can perform the way that you want to again!!
For me, I think that it is over!!

Peace and Blessings to you both
Saysusie

coco74728
08-23-2005, 06:47 PM
Thank you for your stories....I read every word. You made me cry becaues I am so sorry for your grief.

My daddy died 30 years ago....I loved him dearly. But I dont grieve for him because I know he watches me still.....

Blessing

Coco