Thank you all for accepting me into your group. I will start from the beginning so that you know a little more about me. I have never been a extremely healthy person, lots of colds as a child that seemed to last forever, and if anyone around me was sick, I was sure to catch whatever they had. Even then I was nauseous all the time and had trouble eating. My knees always hurt and were constantly popping, some days just getting through the school day seemed impossible. Yet the drs had never had any answers, telling me to take ibuprofen for the pain. At 16 I had my first seizure, one of the scariest things I had ever been through.... up to that point. In the years to follow I would struggle with the seizures and the side effects of the medications, some seiures were so bad that I would be paralyzed on the right side of my body (a temporary condition called Todds Paralysis lasting between 6-10 hours). This happened three times by the time I was 20. I have no feeling to this day in the fingertips and toes on my right side. Still drs had no answers, (epilepsy does not run in my family). Between the ages of 21-26 I had to have my appendix and my gall bladder removed, along with numerous ovarian cysts. At 27 i was diagnosed with cervical cancer and had to have a hysterectomy, (They left my ovaries hoping that my hormones wouldn't be affected). Three days after my hysterectomy I was back in emergency surgery due to a ruptured Intestine. Within those three days I was in so much pain, that I turned to whiskey for some relief, turns out that I shouldn't have survived, the whiskey helped to "sterilize" so to speak, my insides. (I do not recommend trying this at home)! I was in the hospital for four weeks, they put a med port in my chest pumping me full of meds, two weeks of which were spent with a tube down my throat, this now became the the scariest moment in my life. My preacher sat at my side for a month, praying.... All I could think is "why me"? Why is my body shutting down on me?? Why am I even still here?? Why is there still no answers? Something is clearly wrong with me.
By 30, I had to have my ovaries removed too, the cysts were bigger and more painful than ever, and on top of it there is so much scar tissue from surgeries that it was wrapping around the cysts, God forbid I try to lift something, then I would be bed ridden for days. The pain now is worse then ever, but nobody seems to listen. I was diagnosed with fibromyalgia, put on cholesterol and blood pressure meds, muscle relaxers, seizure meds....nothing was helping. In January of 2013, I was taken into the ER with chest pain, I thought it was a pulled muscle, I had just gotten over pneumonia, I was fine. Friends and family insisted I get checked out, I was immediately admitted, it was my heart. After two weeks I was released, failed stress test, but no blockage, thin heart walls. Take it easy they said, no lifting, no stress (yea right), but still no answers. I spent the next eight months in and out of the hosp, finally one dr asked if I had been tested for lupus, and if not to have them test me right away. Then the bombshell hit...the tests were positive.... I am still in shock, every day is a constant battle. Everything hurts, I cant stop puking, I cant get out because if I do then I am useless for at least two days. Nobody seems to understand, and thats what hurts the most. I have never been "normal" so I cant even say "I miss being normal", I guess I just wish that for one day I could know what it is like.
I have a great pcp, but I am still waiting to get into the rheumotologist! MyDr finally put me on hydroxychlorquine and pain meds, which helped a little but now it just doesnt do any good. I am still fighting through the side effects of the anti-malarial drug. i have lost 50lbs in the last four months. I look like a skeleton, and that is killing me, Its depressing.
I am lucky to live in Colo, and have a medical marijuana card. It helps with the nausea and if i find the right kind I even am able to eat something and keep it down.
I apologize for ramblng, I guess I really needed to get it out, and actually have someone understand!
Welcome to the group. Your story has parts that would probably be familiar to most of us here. Similar to you, I have difficulty with the side effects and have lost significant weight. I don't have a med card, but am on a synthetic form of THC that is supposed to help, which doesn't very much. Unfortunately, there are not a lot of meds out there to control our symptoms, and depending on whether or not you're ANA neg, your options are even more limited.
That said, the weight loss (if your lupus is not currently flaring) needs to be addressed. I understand the frustration of putting on a pair of shorts one week and having them fall off the following. I had to see a GI doc and am having everything scoped. My Rheumy said that many times docs just assume it's all related to lupus, however even if related we are more susceptible to other issues such as celiac disease.
I would look at the group on here for Gluten/Allergy free foods. There are some good recipes and I have found that cutting out gluten has helped...mostly with the nausea.
You are not alone in this and the people here do understand.
When you see your Rheumy make sure that you take a list with all of your symptoms, as your treatment may change as your symptoms change.
Hope you feel better soon.
Welcome JoJo
I am glad you shared your story.
JoJo, welcome to the group. You will find it very helpful. We all understand the condition, and what goes with it. We understand the pain, frustration, and being scared. It's okay to tell it all here. It's a good place to share and 'vent'. I'm so sorry to here of all you've been through. TRY to keep your chin up. Feel better.
Welcome! I can totally relate to your comment of never being “normal”. I’ve been battling these illnesses since I was 7 and didn’t know until I was in my 20’s that most people don’t wake up stiff and sore and ready to cry from the pain. Unfortunately, by that point my neural network had already developed to be more sensitive to pain. I was also sick constantly when I was young. I hope that your rheumy will be able to help find a drug regimen and lifestyle regimen that will help you. Remember that most of the meds take a while to work. Good luck!
Welcome JoJo. I too am glad you shared your story. My highest hope for you is once you see the rheumatologist that solutions began to be found to where you can at least see some improvement...but want much, much more for you. As for finding folks that 'get it'-- you have found the right place. You will find more folks that understand your symptoms and feelings here than just about anywhere. I agree with the whathappensinvegas about keeping a list of your symptoms. Me, I also keep a journal and come here. It helps you purge quite a bit of your feelings and also a good way to measure how you feel from day to day. When you first get diagnosed, it can be really daunting. But just keep track of what you experience and feel and rest as often as you can. I too hope you get a good rheumy that gets it. As you go along, you may find that some things you eat/drink increase your flare activity. Talk to your rheumy about that also and you can find resources about that here and on the internet. You've came to a good place JoJo. I wish you nothing but the best :)
I am so thankful that I found this site! It has only been a couple of days, but just being able to hear your words of encouragement and understanding, is exactly what I needed. I have spent hours reading all your blogs and discussions, and for the first time I have found hope! I finally know that I m not crazy!! What a amazing feeling. I will be starting a journal today, and I hope that it will help my drs and myself understand at least a little, what my body is telling me. Thank you all
I had a similar story of always being the one with mystery health issues in my family, but never anything so severe as yours! It’s a heart-wrenching story both in how hard you’ve had it and how strong you’ve been to survive it. Please try not to be afraid of your new diagnosis… It’s not “just one more thing”… It really accounts for nearly everything you described, except the Gyn cancer and of course surgical damage to your intestine (if that’s what caused it… If not, it could be lupus-related too!) All that to say now that you know, it’ll be possible to treat it correctly and get some results. Lupus is a very tough but also treatable disease. You may see a lot of your symptoms and dangerous conditions improve once you get stronger treatments (plaquenil doesn’t counteract active disease like the stronger meds, just prevents flares and provides a small but important level of maintenance for primarily joints and fatigue, plus can help a little with sun sensitivity. It also takes 6 months to build up and kick in, so don’t expect that to help yet!) One sad thing about lupus treatment is that many of the meds have other side effects, ranging from difficult to dangerous (steroids and chemo.) Some of the most promising new treatments (biologics) with less side effects (though some serious but uncommon risks) are not approved for lupus yet, but some of the most progressive and expert Rheumatologists will prescribe them off-label like mine. There’s a big issue remaining–very high cost. But I do hear the one that helped me so much, Rituxan, is coming off patent soon for generic! Hang in there, and know that you’ve probably (hopefully!) been through the worst of it already without proper diagnosis and treatment. We all welcome you and wish you the best!!!
Hi JoJo,
Welcome and am so sorry to hear what you are going thru. But don’t worry that is exactly what this support group is for for u to vent or ask any questions I know I have learned a lot from people here who have been diagnosed way longer than I have and it helps so much. Wait to see your rheumatologist mine was god sent he prescribed practically all my medication and can say I feel so much better hope god blesses you with a good doctor as well and helps you with a good treatment tomorrow will have my 2nd appointment with him and am so grateful his treatment has helped me so much can’t wait to see him and thank him in person. God bless and let is know how your appt goes with your rhumy best of luck.