sicker than your average

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meeks
Regular Member


Date Joined Dec 2007
Total Posts : 27
   Posted 3/27/2008 3:15 AM (GMT 0)   
...that'sthe name of a poem I'm working on about my struggle with Lupus thus far.
anyways lately I've been just that. I'm soooooooo sick of being sick right about now
earlier this month I had to have a colonoscopy b/c I was bleeding from my rectum ( i know TMI) Turns
out it was hemmorhoids and an anal fissure. eyes and as of this past weekend I had a lymph node become swollen on just the right side of my neck,the swelling has since gone away, but it's not completely gone.
None of my other nodes are swollen as of yet, but I am throroughly annoyed w/ myself and this illness.
There are days where I feel fine and others I feel like I'm gonna FLIPPIN' DIE! 
My money is being syphoned into paying bills from procedures & doctor visits.
It seems like everyday something new pops up that is wrong with me, and my dr is soooooooo super quick to ship me off to another phy. that's gonna suck some more money out of me.  I'm only 26 yrs old, I should be living it up.  But I'm stuck with the sickness.h
 Is there anyone in this forum who was diagnosed in their 20's, and could share the progress ( if any) that has been made since. 
 
Should I just cut my losses now and apply for SSI disablity and give up my dream of going to culinary school to become a chef.  b/c it seems the lupus thing has got me down for the count.

happy wife
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 3/27/2008 5:53 AM (GMT -7)   
ms meeks, i am 43 and was recently diagnosed with lupus.  The dr. says I had it all my life and was only now diagnosed.  In my 23 adult years,  I married the man of my dreams,I have birthed and raised to college age, 2 wonderfully polite sons, foster parented 7 children at one time for nearly a year in a children's home, I was 24 then. Been a stay at home "soccer" mom, and hosted large numbers of children almost every weekend in sleepovers, (it is still going on).  I look back and I remember sleeping a lot whenever I could and I remember going full steam whenever I could.  Sometimes I wish I was never diagnosed, but like you my face began swelling near the neck and my ANA test came up 1641.  Bingo! I am now a Lupus patient and it is really nice to meet you meeks.  There is hope, yeah please don't give up!!!

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 3/27/2008 6:56 AM (GMT -7)   
Sweet Meeks.  I wasn't diagnosed until I was 48.  I just wanted to let you know that I feel so badly for you.  I've been going through the same mess you are with one thing wrong after another and the medical system syphoning my paycheck through all its' various pieces of equipment.  I keep working full time because my daughter is at cullinary school at Le Cordon Bleu Atlanta.  She's finished her course work and now is at her externship in Disney World.  She finishes in May, just before her 23rd b-day.  BTW, I'm not paying for her classes- she got a loan. I'm just paying room and board. She goes to school with kids who got loans to cover everything and work a few hours a week at the school for spending money.  It's expensive, but worth it. I hope your rheumy gets your lupus under control (yes it's possible!!) and you're able to pursue cullinary school, perhaps one not as expensive. There are other women on this forum who are your age and going to school. It's a bear, but they're doing it. I'm sending you LOTS of Positive Energy Sweek Meeks!!  Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/27/2008 7:29 AM (GMT -7)   
meeks, I'm so sorry you have to deal with this at such a young age. I was in my late 30's when I was diagnosed and it was SO hard to accept all the changes this illness forced me to make and the things that I had to give up - the whole thing stinks!!!

Please don't give up your dream - you very well might get to the point where you find the right combo of meds that keep you feeling decent on a more consistent basis. It also sounds like you might want to think about finding a really good primary care doc who can be the center of your care and hopefully won't just ship you off to other docs for everything. Also, make sure you like your rheumy and you feel like he/she is doing everything they can to help you feel your best. A lot of us have had to go through several docs before we find one that we really like.

Hang in there and know that we are here for you. (((((Hugs)))))

Happy wife, welcome to our wonderful forum. You will find lots of friendly, helpful and supportive people here.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/27/2008 12:50 PM (GMT -7)   
Hi Meeks:

I'm 43 yrs old and can say that I had lupus when I was 23 yrs old. I wasn't officially dx'd with lupus until I was 36 but the word lupus was mentioned when I was 23. I can say that I went to college got a degree, had a baby, worked a full time job and managed the best I could. I had periods of time that I was healthy and doing well and others when I was laid off from a job because I missed to many days from work.

I wouldn't give up on your dreams. I know it's frustrating being so sick. I've done a terrible thing I was a lot sick with my lupus, I insisted that we try various drugs and I traded just having lupus to having lupus and cancer now. I've gotten a blood cancer from one of the meds I used to treat my lupus. I'm 43 and should be in the prime of my life and I'm lucky if I can walk to the toliet. I've been told I'll need a bone marrow transplant in 4 to 5 years, and they don't know if they'll find me a donor. So I asked my oncologist does that mean I'm going to die and he said w/o a transplant yes I'm gonna die. I'm not gonna give up though, I'm hanging in there and I think that you're young enough that you can go into remission and do the things you want to in your life. Sometimes we've just got to be patient and give our meds time to work.

Don't give up Meeks, try to stay strong. We're pulling for you and wishing you the best. Know that we're here for you and we do understand.

Best Wishes,

Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


happy wife
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 3/27/2008 6:26 PM (GMT -7)   
 
barbara lee I so sorry.  you can email me and we can talk some more. I am 43 also and would like to pray for you and encourage you.  What a hard thing you are going through.
 
And hippi mom:  thank you so much for kindly welcoming me to the group.  My best friend's daughter is a culinary major in SC.  My son should have pursued it, he is an awesome cook.

happy wife
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 3/27/2008 6:27 PM (GMT -7)   
barbara lee: oops! I forgot to give you my email
[img]/community/emoticons/yeah.gif[/img]

<Edited - email address removed. For your own safety, please edit your profile and put your email address there rather than in the body of a message. This prevents spammers and automated address programs from getting your address.>

Post Edited By Moderator (Lynnwood) : 3/27/2008 7:46:33 PM (GMT-6)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/28/2008 7:27 AM (GMT -7)   
Please don't give up your dreams because of Lupus. I was in my 20's when I was diagnosed. I actually had a 4 year period of remission in which I was
able to live life to the fullest and work 2 nursing jobs! Sometimes it seems like there's no light at the end of the tunnel but don't give up. You may
have some extra challenges along the way and have to come up with some unconventional methods of accomplishing your goals, but you can do!
Hang in there. You never know what doors God will open up to you. God Bless You, Judy

kanubewell
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 3/28/2008 3:41 PM (GMT -7)   

 

Hi Meeks

         Just a note to say that you are in my thoughts and you are at the opposite end from my age. I know how hard this is to settle in our minds....never mind the sore, tired body. I was only recently diagnosed with SLE but they figure it was there for sometime and it has been a rough 9 mths.... sick and tired of all the Drs. tests and  has sure altered my life. Never give up your dreams altho they may be done differently.. without our dreams we lose part of ourselves.

     Up until 5 mths ago I had a very busy sewing business which I so enjoyed and am targeting to get back-----probably in an altered fashion but I make notes in my journal as to how I can accomplish some of what I used to undertake.May until Nov are usually my busy times .So take care of yourself and remember there are a lot of supporters on this site.I figure having dealt with preinvasive breast cancer 3 yrs ago I have learned to only do what is necessary and leave the rest for another time...


meeks
Regular Member


Date Joined Dec 2007
Total Posts : 27
   Posted 3/30/2008 9:48 AM (GMT -7)   
thank you all for you positive words, I really appreciate all of your insight.
as far as an update, the "swollen node" is practically gone...go figure.  so no biopsy needed for now.
however my dr. now wants me to get a chest x-ray to rule out TB. eyes .... I guess.
 
One a happier note , my ANA is dropped signifgantly it was 1280 now its 83!!! ( that's good, right?)
but I still feel achy and tired, so I must be sick w/ something else. my dr. ruled out infectious Mono after my most recent blood test. So.....I'm not sure whats going on?
I honestly hope I don't have Pnuemonia!!! (my older sister died from that 2 yrs ago...she was only 30!!)
 
I'm am seriously scared you guys. Please pray for me and or send positive energy my way
-Meeks

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/30/2008 1:06 PM (GMT -7)   
Hi Meeks, 
   Never give up on your dreams!!!! I was dx'd when I was 32, but had lupus for 13 years before that. I'm now 50 years old and doing quite well. We never know from day to day how this disease will affect us, but we can't stop living just waiting for the next downfall. Lupus has knocked me down many times in the past, but I always bounce back. I take it one day at a time and cross one bridge at at time. I still have times when I get depressed and want to give up, but I know I can't let that happen. Go for your dreams and live!!
   Hang in there and take care. Keep us updated. You will be in my thoughts and prayers.
                                                                Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 3/31/2008 5:44 PM (GMT -7)   
Hi meeks ,
I am now 31 I was diagnosed at the age of 28. I think there is hope I am now considering going back to college myself. You are in my thoughts and prayers. I did struggle a lot in the beginning but now they are better then when I was diagnosed through many different medicines finally some that work best for me. Yes!!!!!!!! I understand how you feel it really will get better. Don't give up on your dreams.
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/1/2008 2:24 AM (GMT -7)   
Meeks, I have had times when the lupus left me unable to do much of anything. Instead of giving up on my dreams I learned to adjust the pace I reach for them to my illness. I am in grad school and pregnant right now. At 26 I was so sick I rarely left the bed due to pain and fatigue. I was untreated and undxed. I say apply for disability and work on your health. Once you have things under control then you can try and do school again. Your ANA numbers have absolutely nothing to do with disease activity. Those numbers jump all over the place some people feel great with a sky high ANA and others like me come close to dying or do die with a negative ANA.

You don't have to give up all your dreams, adjust your time table to accomodate your disease.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


meeks
Regular Member


Date Joined Dec 2007
Total Posts : 27
   Posted 4/2/2008 10:30 AM (GMT -7)   
redrose77 said...
Meeks, I have had times when the lupus left me unable to do much of anything. Instead of giving up on my dreams I learned to adjust the pace I reach for them to my illness. I am in grad school and pregnant right now. At 26 I was so sick I rarely left the bed due to pain and fatigue. I was untreated and undxed. I say apply for disability and work on your health. Once you have things under control then you can try and do school again. Your ANA numbers have absolutely nothing to do with disease activity. Those numbers jump all over the place some people feel great with a sky high ANA and others like me come close to dying or do die with a negative ANA.

You don't have to give up all your dreams, adjust your time table to accomodate your disease.

 
( @ part in bold)Are you serious?!?!??
 
I was told my ANA count had everything to do w/ my Lupus flares & remissions?? WOW! I've been lied to!
Meds: Prednisone - 5mgs ( 1mg x 5 )
Diclofenac sodium- 75mgs
Vitamins:  Vitamin B, C, and E


happy wife
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 4/2/2008 11:54 AM (GMT -7)   
Hello Meeks,
I was dxt in 1/07 with an ANA of 1600+. (0-99) is normal. But my doc, like Redrose's doc said ANA level has nothing to do with severity, it just indicates you have lupus.  I haven't had a flare since, and when I went last month to have my blood levels checked, since I am off all meds.  The ANA wasn't checked.  I was curious though what it might be without a flare, but I didn't ask to have him test it.  Prayed you'd be feeling better.

unhappy25
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 4/6/2008 10:21 PM (GMT -7)   
I was diagnosed in my middle 20's after my second child. It was hard to accept plus I had never even heard of lupus until then and I was scared to death. I have went though alot since then and I know how you feel about feel tired of being sick all the time. I would not give up your dream, you may find the right med. and doctor and go into remission. After I find out I worked for about another 5 or 6 years. I hope you can find the right comb. of med and go on and fill your dream. Don't give up.
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