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GIVEAWAYS
i’m reading you celeb list (add bernie mac) and thinking, boy, the dead ones are lucky, no more pain. that’s my mind set after 20 something years of this horror and the last 4 days bedridden. it sucks and is a sad excuse of a life.
i mentioned mr. bernie mac because i thought i recalled a news report right after he passed that said he had a form of lupus, sarcoidoisis. looked it up after email and discovered he did not have lupus, just something very similar in that it is a immune system attack. sorry!!
anyway it’s sad that he’s gone because he gave people joy. he still makes me laugh on his show reruns.
I hate living with Lupus I’ve been diagnosed when I was 17. I;m now 25 and I feel like my life is ending. I get sever vasculitis on both my legs. Sometimes I stay in bed for days on end. because I can’t walk. I hate taking medication it makes me feel worst. I don’t look at my self in the mirror anymore. I hate myself. I hate Lupus! I wish I was dead, can’t deal with it anymore.
Theres no cure and I’m sick of hoping that someday there will be a miraculous cure,
i was wonderful if anyone is doing the chemo RITUXAN. i am getting ready for my 5th treatment and i am afraid. i hate being afraid. if you have been taking this drug i would love to hear from you. thanks.
I haven’t been on that drug. I am dealing with low vitamin D again. I know how frustrating lupus can be. Hopefully you’ll find your answers somewhere
CC
I have a low vitamin D and it got down to an 8 and they put me on high doses of vitamins but now it is back down to 24. I have osto and they want me to come in to talk about more drugs. Is anyone else taking meds for this
thanks Jackie
Jackie,
I’m on mega doses of D on top of my regular dose. They cannot get the level up for nothing.
cc
I just received a letter with a prescription from my Rhumetologist for Ergocalcifer 50,000 IU’s to take for the next 12 weeks due to my Vit D levels being 15. I have been very adamant about not taking so many of these dang medications that are so toxic to our bodies and trying my best to get it through diet. I ‘ve noticed no one pn the post has mentioned strength building exercise. Ladies we have to exercise! I know how we hurt and are very tired but try the Wii system and I send love and support to all! and ask in return you send some my way because my biggest battle is family that just don’t understand!
Jamalicia
Alicia,
I understand the Vit D deficiency all too well. My daughter just received a WII so I am thinking about trying it out.
CC
Oh My Gosh! I feel like I am just talking to a brick wall when I talk to my Mother. She thinks that everything is going to be OK. She never wants to watch my children for me and give me a day of rest. I have a husband, but he works alot. I also deal with the low vitamin D. It just feels good to know that I am not alone. Thanks!
Doree,
Hi, glad to see you came by. You might want to share the blog with your Mom. It is such a huge struggle dealing with everything that goes with this stuff.
CC
My initial ana test has come back positive, and i have a vitamin d deficiency. My primary physician is transferring me to a rheumatologist, but I can’t get in for 2 more months. Is there anything I can do in the meantime while waiting for more conclusive test results?
Dustee,
The best solution for you is to keep yourself busy and try not to diagnosis yourself before you get to the doctor. I went through years of doctors tell me it was in my head. Finally, my primary doctor sent me to an excellent nerologist who listened to me and fought for me. He did the right tests which gave me a feeling of validation.
CC
I am 33 and recently diagnosed with Lupus. I went from young and healthy to sick and tired and feeling old over night. I was on one OTC med a day and am now taking 15-18 pills a day. My Rumy at my last appt. told me she could guarantee any type of remissioin only that she will do her best to treat the symptoms. Someone please tell me this isn’t what I have for the rest of my life. And to top it off I was called today and told to start on a new script for 50,000 IU vit D once weekly for the next several weeks. I feel like I’m sinking in a deep dark hole with no way out.
I ment to say my rumy could not guarantee a remission.
about 4 monthes ago my husband convinced me to get my ana checked after years of hearing me tell him i didnt feel good. (my mom had lupus and he just wanted me to rule it out) convinced my tests would come back negative i went to my pcp and asked for the test, which she was reluctant to give me “we just dont give blood tests for no reason” she said…well after i told her my mother had lupus she decided to give me the test. it came back positive and she refered me to a wonderful Dr. I was going crazy waiting for them to call back i needed to know what was going on with my body im 23 years old i shouldnt be sick im young. (thats what kept going through my head). i have had 2 blood tests since then (my Dr. is very through) they came back positve but not conclusive i have very low vit.D i have 50000 ui a week and i am on plaqunil (every day) but still i havent been fully diagnosed. i just wanted to share that with some one and maybe they have some kind of anwser or something for me.
Tifanie,
God be with you. I’ve been there with it all.
CC
Tifanie,
I am 27 and all my symptoms started 2 yrs ago. The ana test can b neg and u still have lupus and rheumatoid. I’m miserbable feeling like u were hit by a truck everyday is no fun. My dad has lupus and thank god I knew what to look for. I have had 3 ana, 2 came back positive, positive rheamutoid 2xs, chronic fatigue, numb arms and legs, weird rashes on chest and arms, sun sensitive,vitamin d deficency, anemia, migraines,muscle pain,joint inflammation,stiffness. I finally was sent to a rheumie after I had a bad kidney infection and pancreatitis in july. I have been out on short term since july from work. My reg dr said he thinks I should apply for disability. Mine gets real bad during my period,I have brain fog,slurred speech. I have been tested for ms which was neg. I never feel rested even when I have slept for 12 hrs. They diagnosed me with sjorgrens which is an autoimmune disease but most pts end up with full blown lupus! I’m in constant pain and the headaches r horrible.I just started plaquenil. Rheumie said it can take a month to feel ne better. I take neurotin for nerve pain for the fibro,foltrin for iron,vitamin d,calcium. I am depressed sick of feeling like this!! Stress makes it worse! Last winter was my worst flare.it was dreadfully cold for tn. Its weird for me and u to have it so young and even more weird dad has it he is cacausian and 52. You should visit the lupus foundation a lot of good information. Hope all is well.tell me how the plaquenil is working. Email me jdaily37087@hotmail.com. good luck!
It is interesting to me the Vit D connection. Three years ago I drug myself to the doctor and told them I felt and walked like my 89 year old father, who has since pasted. Anyway someone finally did a Vit D test and it was less than 7! Now I know that it couldn’t be measured, it was that low!! Anyway since then I have been diagnosed with Fibro and borderline Lupus…which I know it just a matter of time before more and more symptoms show up…my question is does anyone have white little round spots on their legs or arms? And my family? I have given up. Especially my sisters, who “think it’s in my head”…and my daughter who refuses to acknowledge that I have had any difficulties. My husband, however, has finally read a lupus book that I have had, and is starting undrestand. He has seen the changes I have been going through in the last 5 years. Inspite of everything, I was able to lose 90 lbs and excersize regularly. That in inself is a mircle! You all know how much it hurts, but I find that after 10 sometimes 15 minutes, it doesn’t hurt as bad! Thank you for this page!
Becky
I’m glad I found your blog! I have been out of work since October… my low back was hurting so bad. I’m on a bunch of pain meds 24/7 and it’s still severe. I saw a neurologist and she did bloodwork. Well my ANA is positive, and there’s a bunch of inflammation and whatnot. I’m seeing a rheumy in a couple weeks. My joints have started to ache so badly it hurts just typing. My knees are swollen up like baseballs and I walk like I’m 80. So no diagnosis as of yet, but I already have ulcerative colitis which is an autoimmune disease so I’m pretty convinced there’s another one going on. Because this is NOT normal for a 24 year old. My neuro did mention lupus though so I think that’s what she is suspesting. I haven’t had a rash though. This crap just started in October so I haven’t had any sun exposure since. I have been getting weird skin bumps and rashes, just little ones but it’s weird. I just hope I can get some answers soon.
Jolene
I had a really tough time today and I wonder if I will ever figure out a way to balance my life. I seem to go through phases where I almost pretend I don’t have lupus and then I end up in the same position all over again…feeling like garbage. I was limping around today and I couldn’t even sit at the movies for the whole movie bc my legs and arms kept falling asleep…does anyone else out there feel like this? I also had a brain MRI last night… ugh…. had my first seizure last week… I just feel horrible and depressed…. I’m totally lost and feel so alone
Allie,
Pretending I don’t have lupus hasn’t worked for me. I’ve had to pull up my shoes and tye my laces whether I feel like doing it or not. Gentle Hugs…
Depression isn’t easy.
Just found this blog,looking for answers.Im 47 and have been in some type of pain for 30 years.Doc says Fibro,Artritis,high blood presure,Diabeties,Nerve damage,and now Grandulomas on my legs.I also have an enlarged liver and spleen,but the doc hasnt even tried to find out why,its been 10 years sience I was told first about them being enlarged.I’m now wondering about Sarcoidosis.Any one know any thing about this.
Donna,
I’ve only heard of the condition by name by reading some blogs. Have you tried looking on WebMD, Mayo Clinic, or Cleveland Clinic. Also Talk to your doctor about things. Good luck it’s never easy living with health conditions. You might need to see a specialist such as a rhemo or get another opinion. I’m not a doctor just a patient whose been throurgh a lot dealing with hospitals and doctors.
I am so glad I found this blog, I have lupus my mom an two of her nieces its been in our family for over forty years it strange it treats each one of different, I lost my hair my scalp itches me to death, my kidneys, my lungs I take ton of med twice a day. I try not to get depress I been told by doctors not to have kids life really can get you down when I look at everyone else enjoying life. It is so sad I am unable to work I have a bad cough from my lungs. I use to work at the local telephone company wich I was around folks all day with the med I take for my Kindneys makes it hard for my body to fight of infections an it also makes me have gingivitus of the gum. So one day I may have to ha all my teeth pull out. So I am really feeling Blue………
Margie,
So sorry to hear your fighting with the lupus. I hate taking the medications, but I’m thankful for the medications. Make sure you have your vitamin d level checked. My teeth have been an issue for since my teen years.
I have been in pain many years due to Fibro,Lupus,degenerative bone disease in my spine so last year I quit my job and went on dissability. I am now still in pain but depressed and broke!!!I guess I can take more pain meds now that I am at home, but now I constantly worry how to pay my bills. Life is very hard when your given so many issues u have to dael with sometimes I wish God would just take me!
Becky,
I know it’s very difficult. The most important thing I’ve learned is keeping my mind busy. Do you like crafting? games on computer? Find a hobby you’ll look forward to doing. Hang in there. I know where you are since I’ve felt that way. There are a lot of great programs out there to help with things. Feel free to email me…..