08-07-2005, 04:56 AM
Hello everyone. I'm Michele5 and just wanted to introduce myself since I've just joined this support forum. I've had Lupus for about three years now and also suffer from a few other chronic illnesses. I just hit the big
4-0, but when Lupus as well as everything else is at it's worse, feel more like 80. But, than again, things could be worse as there are certainly a lot of others out there who are a lot worse off than I am. So, I do not want you all to think I'm throwing myself a pity party here, but will admit that there are times, when alone and feeling VERY badly, that I do just that -- but alone as I do NOT like to bother others with my problems. I just thought I'd let you all knoww a bit about my medical history without getting into details. Despite all of my illnesses, I'm lucky enough to have a wonderful husband, two great dogs (corgies, Fred & Gretchen) and two great cats (Puddy, a tabby, and Stumpy, a Munchkin cat, very rare breed-absolutely adroable) -- they are my four babies since we do not have children. I also have a great family, in-laws, friends, and job (although I've been out for past 18 months due to illness), which I plan to return to in two weeks. I have been advised to go on disability, but I've been at my job for close to 20 years and really don't want to lose my status, great pay, benefits, co-workers, convenience (4 minute commute & across the street from my doctor's office, downtown, hospital, mother's house, etc.); therefore, I just feel it would be a mistake to give it up if there is anyway possible that I can return. I've already tried three times in the past and have always ended up getting too sick to continue, with absences varying from one month to the latest absence of 18 months. When I feel hopeless and ready to finally give in & quit, I think about a very simple sign in my doctor's office that says, "Regrets Are The Chances We Didn't Take." I know that it might seem insignificant to most, but I feel that there's still a little fight in me and although I'll never be in perfect health, I think of that saying and just cannot give up. So, it's been 18 months without a paycheck, I've drained my bank account, and gone through hell for all these months (emotionally and physically), so I'm going to give it one more shot. After all of that, it's the least I can do in order to see exactly what I've got. If, after all that and STILL not being able to sustain my health long enough to continue work (I'll never feel great, but o.k. is good enough for me!), I'll have no choice since I've promised my husband, my doctor, myself, and most importantly, my boss after all of the chances he's given me. Plus, disability may not pay a whole lot, but it's better than nothing & I'd really like to keep my house, so...
I'm sorry if I bored any of you and/or given too much information in my very first message, but I'm a very open and friendly person and am sure I'll meet many of the same on this board. We may all be suffering from Lupus as well as other illnesses/problems, but hey, we are still all alive and able enough to communicate with each other via our computers, so not all is lost. I'd really be interested to hear from and communicate with some of you, if I haven't scared you off yet with all of my babbling. :) :lol:
In the meantime, I hope you all have a nice day and feel well enough to enjoy it.
08-07-2005, 11:10 AM
Hi Michele: :lol:
You did not, in any way, bore us! We are here so that you can talk about this illness and how it has affected you. We are here so that we can listen, offer you comfort, understanding, information and support.
Like you, I tried and tried to hang onto my job. My bosses were not at all as understanding as yours and they tried to fire me. I completely understand you wanting to try, at least one more time, to see if you can make it. Otherwise, you will be living with the "What-ifs".
You are lucky to have a doctor who is willing to help you with disability - most of us did not! It will be a long, hard fight..but don't give up!!
We are happy to have you here and wish you the best of luck since we all understand what it is like to just never feel good! Listen to your body, learn as much as you can about the disease, take good care of yourself and remember: YOU ARE NOT ALONE!
Peace and Blessings
08-07-2005, 06:39 PM
Hey, you said I didn't bore with my first e-mail, which is short compared to this one. Sorry....once I get on a roll, there's no stopping me sometimes -- ask family, friends. and my poor, poor husband - not many can say this, but I married, in my opinion, the MOST wonderful, caring, smart, cute, funny, ambitious, helpful, you get the drift, I'm sure, man on in the world! But than again, I may be predudice cause he's my honey! He takes care of me, especially when my Lupus flare ups are really bad and Plaquenil, Prednisone, Lasix, you name it, I've tried it, won't work. !o bad with these things cause I generally like to type what I would say and usually say a whole lot, so.....lucky you, Susie! The others will probably get scared and run a way! Just infor on my Lupus & other illnesses which make it much worse sometimes! Happy reading (if ya can stay awake to fiinish it!).....
Hi Saysusie (I assum your name is Susie -- do you mind if I call you that?). Thanks so much for getting back to me so quickly. Yes, it is unfortunate that people with real, physical pain and illness have a hard time getting disability, when drug addicts & alcaholics (recovering or not), women that continue to have children so they never have to work, people with minor injuries that they play up but are fine enough to do everything else, welfare mothers who work under table, I could go on and on, since I happen to know all of the aforementioned, with a few in my family, mainly cousins and sister-in-law, and believe me, I let 'em know how I feel, as it's people like that who make it hard for people with legitimate disability claims. :mad:
As I said ealier, I have a few other illnesses besides the Lupus, and my doctor said that all of 'em combined should make it an easy decision, plus my therapyst (yes, I have one of those as all of this stuff gets to ya after a while, don't ya think?) is best friends with a husband/wife practice that just handles denied disability claims for people who are legitimately applying, with proper back-up info from docs. (I have at least 10; I'm not kidding, including ALL tests results, doctor's visits, meds (counted and have 15 scripts for different pills, 1 for Fentanyl Duragesic Patch, plus an asprin (had TIA years ago so I have to take one per day) and a Centrum vitamin, not to mention to for perscription laxatives for digestive problems (think this is bad -- if I got into that area, you'd be bored, believe me, if you are not already. I sometimes take all natural things like pure coconut oil (supposed to be good for Lupus, Thyroid condition, IBS, Chron's, etc., as well as weight loss if need -- thank God I don't have that problem anymore. Certain meds blew be up a few years back, gained over 50 lbs. in 6 mos., yet couldn't hold ANYTHING down due to digestive issues, mainly Chroniic Pancreatitis, and could do the strenous workouts anymore because of the Lupus, so.....nature took it's course, thus the extra weight. Noww I don't eat a ton, but a hell of a lot more than bofore and everyone thinks I should GAIN weight, which I've never been told in my life. It feels kind of good at first, but even I know I'm too thin and not matter what I eat, I can't really gain much, maybe up/down 5 lbs every weigh in, but nothing drastic. Then again, I don't want to jinx myself and wake up 300 lbs. My Rheumatologist and other doctors were giving me hell since the extra weight was really weighing heavily on my joints, bones, muscle (not that I have a lot!), everything. Since I have the onset of RA and Osteo- arthritis, and porosis (sp?), you name it, my movements have cut down to the point where I can hardly move at times, especially in the humidity (which has been unbearable) and dampness. And to think, we almost relocated to FLA or DC -- I really would have died. I used to bake in the sun, and now I can barely go it it, which really bums be out; then again, to look on the bright side, I'll save my face & chest from getting a few more wrinkles! I could go on and on, but I'd really like to know something about you, Suszie (hope it's o.k.).
How long have you had the Lupus, at what stage are you in now, ever go into remission, get so mad you literally can't move, rashes, vomitting, and all that funs stuff? I know every case is different, and some people go into remission and never have it again. It happened with my cousin; she had a baby, against her doctor's advice, by the way, and he's the cutest little thing -- about 4 now, with a 2-year old sister. My cousin hasn't had a sign of it since than, takes no meds, feels just great! Of coursse, I couldn't get pregnant & had a hysterectomy at 34, before being diagnosed with Lupus, RA, etc., so that option was out -- I'm telling ya, in my next life, I'm gonna beone of THE healthiest person, or one of them anyway, hope you are in there with us healthy people. I figure if I stay positive enough, am good person, pray to the Lord not so much for me, well I've been taught that I MUST pray for and love myself for others to love me, so...I do the best I can. I usually pray to get better so I'm not a burden on my poor husband, mother, neices & nephew (my babies since I don't have my own kids; they are closes thing to it), other family members, friends, everyone, in order to be the great wife, daughter, aunt, friend, worker, etc. like I was only 4 short years ago! sure you know the drill. Without getting speific, On the If only that happened to us all! Oops, there I go again, turning everything around again. Now, about you, any info you care to share? You seem like an extremely nice person, so again, I'd really be interested in knowing your story. This way I can get acclimated to the process and what/what not can be said on this site. Personally, I don't think I did anything wrong, but ya never know. So, in meantime, please get back to me. It wouuld really meen a lot to me, as I wasn't sure if anyone at all would take the time to read it, or this huge one for that matter -- may even take you a couple of days after your eyes start glazying over and you start dreaming about Lupus, treatment, hospitals, and this crazy woman named "Michele" who doesn't shut up, EVER!
So, I WILL FINALLY SHUT UP NOW! :D Again, I'd really like to know a bit more about you, unless you do not feel comfortable of course. Was the info I gave you too personal? Since they are all related to my Lupus in some shape or form, I figured it was o.k. This site seems prretty good, but I'm not sure how strict they are regarding these matters. So, would you please let me know, as I'd hate to get tossed out of the very first night and only two hours into it! Thanks again for your kindness, and againif you don't read my "novel," I don't blame you, especially if you're not into the the subject matter. In the meantimee, please keep in touch as I'm sure we'll all get to know each other (well not all us, but a few at least don't ya think) well enough to vent or pour our hearts out, or maybe bring us good news. I will be upon my 9 day cruise to Carribean, that's if work will let me after being out 18 mos., then ask for time off 7 weeks after my rern. [b] Take care & thanks for listening - now it's my time to listen to you and everyone else! Oh yeah, sorry for any typos, mistakes, etc., as I haven't had time to reread. Thanks again, Michele
08-08-2005, 05:51 AM
You're a far better and faster typist than me -- it would take me forever to type all you have! Thanks for sharing so much with us, I hope your health will allow you to return to work, feel good, and take that cruise. BUT - if you do take off on a cruise ship....
buy a BIG hat with a BIG brim you can't see through (that way the sun can't see through it either).. Wear it.
buy a gallon of SPF 40 or higher sunscreen (uva/uvb) and slather it on every 2 hours when the sun is above the horizon. Even if it is cloudy.
Wear long sleeves and slacks. Yep, even after putting on sunscreen
Yeah yeah yeah....but you KNOW the consequences if you don't!
Many hugs to you, welcome, and I hope we're hear from you regularly!
08-09-2005, 02:53 AM
My Goodness Michelle, like Hatlady said, you must be an exceptional typist. I believe that my hands would have cramped while typing :lol:
I wil tell you a little about myself, most of it you can also read in previous posts and in the bio on this forum!
I was dx with Lupus in 1985. Somehow, I achieved remission around 1992 and have remained in remission since (don't get me wrong, I still suffer from Lupus symptoms, I am just able to control them without medication). However, I do have Fibromyalgia (for which I am taking medication); Raynaud's Syndrome; TMJ; IBS; Thyroiditis; Migraines and a list of other ailments.
I am retired after being in law-enforcement for 25 yrs. I lost my bid for disability as I retired due, in part, to my illness! But, they did not seem to care!
I believe that there is a greater good and that we are all a part of it and my motto is "Look for the Good in everyone and everything. When you find it, praise it and rejoice in it!"
I am dedicated to this forum and to those who participate in it. I do this in loving memory of my daughter (whose picture I keep before me each time that I sit down to my computer) who succumbed to Lupus in 1999 at the age of 24.
My life is filled with happy memories of her but also very sad, lonely, long days when I long to see her smile, to smell her skin and to talk to her just one more time. So, that is the condensed version of who I am.
Thank You So Much for expressing an interest in me :D
I hope that you continue to find what you need on this forum.
Wishing you health, peace and blessings
Saysusie (by the way, my name is Susie and yes, you may call me that!)