View Full Version : A Newbie In A New Year!
01-03-2009, 06:44 PM
Hello everyone! I can't tell you how happy I am to have found this posting board. A bit about me... I am a 42 y/o female who was diagnosed with SLE in July of 2008. Before that I had been an insulin dependent diabetic for 28 years so I was fully aware of the fun that went with autoimmune disorders. Over the course of the years after that, however, I had been faced with increased problems with fighting infections, recurring viruses, chronic aches and pains, dry mouth and eyes, migraines, sensitive skin, depression, etc. Of course, each of these problems had its own diagnosis--my doctors would say the infections were because I am a diabetic; repeat viruses was because I was a diabetic; aches and pains were because of several past surgeries; dry mouth and eyes were because of allergies; migraines were because of drug-induced rebound syndrome from my migraine meds; sensitive skin was because I was using the wrong cleansing products; depression was because of all of it. NO ONE thought they might all be related. Geesh!
Finally, my primary MD sent me for a series of blood tests for everything, including Lyme Disease. The two things that came back funky were my very low iron levels and a positive ANA. These, plus my allergies to penicillin and sulfa drugs triggered him to send me to a rheumatologist. My rheumie then tested me for things that no other dr. checked, including my C3 and C4 levels. I received a call 5 days later saying those specific numbers, which were low, were indicative of Lupus. He said it was most likely a connective tissue disorder or vasculitis. A simple eye exam would rule out vasculitis, which was fine. At that point I was put on Plaquenil and some anti inflammatories.
The diagnosis was bittersweet. It was not what I wanted to hear, but I was just glad to hear it was SOMETHING! The MDs didn't have to think I was begging for pain meds because I was an addict or was just a hypochondriac. Every time I would go to the doctor for an illness or ache/pain, I felt they would say, "Oh geesh... here she comes again..." Not only did I think my doctors said this, but I know my friends and family did as well. It was depressing to not be able to leave the house because of some cough, cold, ear ache, or joint pains. I felt bad for my husband too who constantly made excuses for me.
Next week, I'll be going back to my rheumie to have a barrage of bloods drawn. Our goal, he says, is to make sure the meds I'm on now are either reducing my numbers or at least keeping them stable. I have to say I have many more better days than before, but it's still a work-in-progress.
I often hear people on here talk about "flares". I'm not sure what my definition of a flare is. Is it when you can barely walk around the house for a day? Is it when you are in bed with a migraine that won't go away? Every day I hurt a little, but it's not enough to keep me in bed all the time. What are your definitions of "flares"?
I'm glad to read that so many of you went/are going through things like me. Sometimes you feel really alone... like "normal" people just don't get the accumulation of symptoms you feel. I'm constantly reading and researching so I hope to be able to contribute as well as learn as time goes on.
Here's hoping you all have a happy, healthy 2009. Best wishes all!
01-03-2009, 10:34 PM
Sassy, I totally understand the bittersweet feeling after being diagnosed. It was so frustrating. Everytime I would have a flare, my doctor would say "next time we'll try this"...At first he kept insisting I was having an allergic reaction...he sent me to an allergist, when th allergist couldnt find anything, the next time it happened he sent me to a dermatologist. It was the dermatologist that did blood work and suspected lupus. That's when my doctor referred me to U.C. Stanford Hospital. After a year of having this weird rash and fever along with joint pain and fatigue, it was a releif to hear someone say it was something... even if it was Lupus. You said you wondered what a flare is. I hear everyone is different. I would like to know what happens to others. Mine start with feeling achiness and fatigue...then I get a fever w/chills. The rash goes away after a few days, and the joint pain pretty much hangs around. Climbing stairs kill me. I take placquenil along with a host of other drugs. I am also new to this forum, and hope to learn more along with with you. Hang in there.
01-04-2009, 10:55 AM
Hey Mary Jane,
Well from one newbie to another, welcome to you too. It's sad that so many people here have different symptoms while it's almost refreshing to see others have the same as me. I tell people that I have lupus because when my indicator tests came back leaning towards that (positive ANA w/speckled pattern, low C3 & C4), the doctor also told me it could be one of two things--SLE or vasculitis. When my eye exam ruled out the vasculitis (I've had my eye doctor for over 15 years...I love him to pieces, he explained everything) that left me "assuming" it was SLE. I went back to my rheumie (THE best in my area I was told) and he told me in January 09 he'd check ALL my numbers again since I had been on plaquenil for 6 months now. I asked him what the purpose of the drug really was--to try and get my blood numbers back towards normal or just to relieve my symptoms. He looks at me and says, "Yes." Great. Then when I leave his office, his check-out sheet always says "Upspecified Connective Tissue Disease". I wonder if because I don't have all the symptoms all the time, then they keep the diagnosis vague.
Like you, I cringe at my stairs up to my bedroom. There are days I either go down them, bring up all my food and necessities and just park myself in bed, or I take all my goodies down and park on the couch. I haven't had much problem with my skin, but if something irritates it like a cleanser or makeup, I'm an itchy mess for over a week. Plus I WAS a fan of the boiling hot shower...man, I've had to change that. All of my tests for my kidneys, heart, etc have been great so I'm blessed there. Like you, when I start feeling exhausted and tired and my fever goes a bit higher than just 99.0 I know it's time to hang a sign around my neck for my family that says "Closed For Construction" for a few days. I am no long working and on disability which helps too.
I guess I'm somewhat lucky right now because I'm only on the plaquenil and a couple of anxiety/depression meds (Gee, ya think? Constant pain does wonders for your sanity!). I take a sleeping medication and something for acid reflux which has gotten terrible in recent months. Other than that, no regular pain meds, anti inflammatories, 'roids.
We'll see how the MD goes next week. I'm completely interested as to what my numbers will be since I've educated myself as to what they should be and remember where they were. I'll keep you posted!
01-04-2009, 03:53 PM
Hey Sassy, Your symptoms sound a lot like mine. I don't have a rheumatologist yet, just my primary care doctor.
I'm 46 years old, and still working full-time. However, there are days when I wonder how much longer I can keep this up. Are you on permanent Disability? And are you on it for the Lupus? I've wondered how hard it is to get approved for disability. I have a feeling like I may have to retire early. I can retire at age 50 if I can hang in for four more years. That will give me 30 years. If I can get disability, it would be like getting almost full pay, and I wouldn't have to worry about finances. I'd like to hear more about disability process.
Good luck at the next dr. apt....
01-05-2009, 12:12 AM
I just wanted to say welcome to both of you :!: I know being diagnosed is bitter sweet. On one hand you are so happy that they finally figured out what is going on with you and that you are not crazy but, on the other hand you want it to go away and you want to go back to living a normal, pain free life :?
You both will love it here :!: There will be at least one person who will be having or have had a sympton you have and they will jump in and share with you. For me, it has helped me feel a little less lonely with this disease. A lot of people don't understand and can't understand what we go through on a daily basis and here they all understand :)
Flares are so hard to define because they are as different as we all are :wink: For me I will get swollem joints, fever, my body will feel like it has been hit by a car :!: :!: I am so miserable when I have one :( Like you two, I feel like I am constanly fighting of an infection......cold, flu, bronchitis, all of them :!: This disease is tricky and shows itself different at different times :wink:
I am just so happy you two have found all of us! We are a family here and there are people from all over the world :!: You will learn so much from being here and you will feel what it is truely like to be understood. Keep posting and keep us updated on what the doctors say. Keep your heads up girls and remember we will be here for you both through the bad times and we will celebrate with you during the good times :wink: I am sending you gentle hugs and happy thoughts.......it was nice meeting the two of you :angel:
01-05-2009, 01:11 PM
Just wanted to pop in to add my "Welcome" to both of you. I fully understand the conflicted feelings of having a diagnosis of a chronic disease, but happy to know that it was "Something".
Many of us go through those feelings :lol:
Lupus is a disease that affects all of us differently, but as Danica01 said, there will always be someone here who understands exactly what you are going through :lol:
Just as the disease affects each of us differently, our flares are also quite individual. So, yes, your inability to walk around the house for a day, or when you are confined to bed due to a migraine may be your versions of a flare-up. Try to avoid exposure to the sun as this is one of the most common causes for a flare. Also, stress is our worst enemy and can throw us into the most horrible flare we've ever experienced.
Neither of you are never alone here. We are all here to provide you with answers, support, comfort and understanding. I am glad that you both are here.
Peace and Blessings
01-05-2009, 03:24 PM
Thank you all for your words of wisdom. What a whacky disease! It's no wonder doctors misdiagnose or worse... never diagnose... it at all. If I sent 3 different people into three different primary doctors with the same symptoms, I guarantee all three would either get diagnosed differently or referred to different doctors. One would be told she has migraines due to caffeine. One would be told she has dry eyes and mouth due to allergies. One would be told her knees ache because she wears high heels too much and ran track as a teen. I got ALL THREE of those! A neurologist visit, an ear-nose-throat specials visit and an orthopedic appointment later, I was still back to square one. And they wonder why the depression sets in. HA!
Mary Jane, to address your question about disability, I had somewhat of an odd situation. I was diagnosed with Type 1 diabetes when I was 14. I never had any problems and was in excellent control. When I turned 34, I ended up having three hernia surgeries (that's what I get for lifting air conditioners and pushing cars!). Because of the diabetes, the hernias took forever to heal. Before they were completely healed, I ended up needing a foot surgery. Before that one healed, I ended up needing female-type surgery. And so on and so on. This has gone on from 2000 till now, with 9 various surgeries in the process. Because my original condition worsened due to the accumulation of them all, I was granted my disability based on my diabetes and the fact that it has contributed to other problems (minor neuropathy, headaches, uncontrollable dizziness based on highs and lows, and now lupus)
The disability process can be a long and drawn out one. The key things are to make sure you go to the same doctors and to go regularly (like we don't go enough, huh?). When you think you might be ready for disability... or even just now... no matter what doctor you go to, tell them you're "not having a good day." I know you hate saying it because you're tired of feeling it, but it will help the process. Talk to you doctors as you feel you might not be able to work anymore. Tell them that working is getting to near impossible. Even mention "I don't know how much longer I'm going to be able to do this." That way, when you are ready to begin the paperwork, they will be prepared to be on your side.
I was denied benefits within a month after I filed my first application. This is normal and you shouldn't get discouraged. The government doesn't want to pay you. Anything. Period. So they figure if they make it difficult--tricky--for you, you'll give up. Don't. Honestly, it wasn't until I got a lawyer that things moved fast. The pros about having a lawyer is that SSD will look at your claims more thoroughly and quickly. You also don't have to do much paperwork after that either. They do everything. The bad thing? They take a good chuck of change. It's usually a percentage up to a certain amount. It is also not unusual to get denied a SECOND time. That denial can take as long as 18 months from your appeal filing. At that point, more paperwork, statements, etc. will be collected to try and overturn it yet still. THAT can take 18 months. So, already you are up to like 3 years. Key is to keep fighting. When they see you aren't giving up, they will be more likely to rule in your favor.
My doctors are amazing, and supported my claims 100%. They are respected in their fields and their documentation held alot of weight with the government. I filed my initial claim in June of 2008. I was denied at the end of July. At the beginning of September, I hired a lawyer and was given paperwork to bring to my doctors to help support my claim. My lawyer filed the appeal at the end of September and I received notification that my claim was approved in mid December. I was shocked. It honestly was a process I was prepared to fight for for the next year or two.
Any questions, Mary Jane, let me know and I'll help you as much as I can. Thank you all again for your help and support!
Hello Mary Jane and Sassy,
I'm Rob, I am 40 and was diagnosed with SLE in 2004. There are so many familiar aspects in both of your stories. The problems, symptoms, and fears you both speak of are things that just about all of us have had to deal with at one point or another. I find that the only people who can truly understand what it's like to live with Lupus, are others with Lupus. Knowing that there are others who are going through these things can be very comforting, and talking to others who understand can can really help us cope with this disease on a day to day basis. So, welcome to our group, and please make yourselves at home.
01-05-2009, 11:25 PM
Hi everyone, and thanks for the big welcome.
Sassy, thanks for sharing your experience with the Social Security process. I'm sure my day will come. My doctor once made the comment to me, we just need to keep you working...that was in the beginning. At one of my visits, I shared with him my fear of not being able to continue working full-time. He said he would support me if I decided to apply for disability. I have so many years invested in my job, I really need to try to stick it out. Although being a peace officer, I know I'm really not physically able to do a lot of my job requirements. Some of the defensive tactics training we do annually I have a really hard time with. In fact the last one, I basically watched everyone else. I'm waiting for them to approach me some day about my physical agility. I guess then i would be forced to retire early.
My kids are still young...9 & 12. So it would be nice to be home with them...I would definitely stay busy.
Once again, thanks for sharing, I really appreciate it.
I don't know about you, but I'm learning a lot reading about others experience with Lupus, since I don't know anyone with Lupus to talk to personally....Now I know all of you.....thanks :BIG:
01-07-2009, 12:38 AM
I wanted to also thank you for sharing your story with us. I am going to start the disability process. Your story will help remind me to keep fighting when the going gets tough :wink: Again, thank you :!: