What to do?

For years I have suffered from pain due to arthritis. Then about a year ago I got this rash all over my face, neck, arms and back. It just would not go away! Saw a dermatologist, she did a biopsy and said I was having an allergic reaction to one of my meds. At that time I was only taking blood pressure meds and meloxicam for the arthritis. Rash persisted even after having all 3 of my meds changed. Then in March of this year out of the blue I have a heart attack. Missed about 2 weeks of work but went back to work full time light duty after that. about early March I started having unbearable pain in my right leg around my chin area. Went to the doctor. By this time I had done some research on my own on the interenet and after reading about Lupus wondered if that could be what I have??? So I ask my doctor to test me for it. 2 weeks later I go back he tells me my ANA test was positive, I am defeciant in Vitamin D. my sed rate is off and a whole bunch of other test came back positive for what he calls an autoimmune inflammatory disorder. Referred me to a rhemmatologist. Hurry up and wait. Still have not seen them because they are suppost to call me to set up the appointment. I have not been able to function or work since May 20th. Both legs had swelling in my ankles, inflammation on both shins and a couple of days with unbearable pain. Couldn't walk, couldn't drive my van, couldn't do much of anything except sleep. At one point I went 3 days without taking a shower because I could not bend my leg to get into the bath tub. I would sleep 12 hours at night and then take a nap again during the day. I am so tired most of the time. Can't eat, just the smell of food makes me sick. I have lost 24 pounds since May 5th without even trying to diet. I requested a medical leave of absence from my job rather than to get fired for missing so much work. I have about 9 weeks left on it. It is an unpayed leave. I have used up all my sick pay and vacation pay. My brain is fuzzy, one minute I will be talking then the next I forget what I was taking about. This has never happened to me before! So I looked into a few things, like where I am going to get money to pay the bills if I can not work. Welfare denied me any cash assistance, there program is for people with small children and my youngest is almost 19 yo. Also I have 4K in a 401 k thur my job. I looked into appling for SSDI and the 2 things that hit me the most are the long times people have been waiting for it and how a person should always get an attorney to help them to maybe speed the process up a bit. So I got a hold of Binder and Binder and am waiting for them to call back. I have paperwork that needs to be filled out by my doctor for my work and paperwork for him to fill out so I can get a handicap parking pass. Had to make an apt to just be able to have him do this. That's this coming up Saturday. So basically since around May 19th my body has been in what is called a flare. I am photosensitive and have stayed out of the sun much to my sadness. I have borrowed a walker with a seat attached just to be able to get out of this house and go grocery shopping or to the doctor. Had to sit at least 3 times grocery shopping on this past Sunday. It shocks me how rude some people can be, cutting right in front of me, wheezing by me as I barely clear the cross walk and letting there kids just run wild in a store with not a thought as to what it could do to a disabled person if there kids bump into your already sore and painful legs. WOW! I have 2 sons, and sadly both have been a huge disappointment to me. They only seem to care about there own lives and I really have had no one to help me when I am in the worst time of my life! I love this website and reading about other people and the suggestions you offer. What scares me right now is that after 2 weeks of feeling like I just wanted to die, this morning I wake up and feel fine. No pain, no inflammation, no headache, nothing! Should I go back to work? What if this is only a one day thing then tomorrow I am back to feeling like crap? I just do not know what to do! Also I have zero income coming in and what little money is left in my checking account will be gone by the end of June.

Wow - this sounds familiar! I share many of your questions and concerns! First - regarding the pain - if you cant get to a rheumy, ask your regular doctor for prednisone. With your elevated sed rate, it indicates inflammation somewhere - and prednisone is great for inflammation. Prednisone is the only thing that keeps my pain away - without it I am pretty much non-functional from pain.

Regarding working - I have this same question. I've been out of work since October (coincidentally the same time I was diagnosed with Lupus) and have now run out of everything (unemployment and severance) and have no income. I was able to qualify for food stamps since I have 0 income but that's all. Disability case is going nowhere fast. So, I'm trying to get a job that I think I can handle physically and mentally. I've applied for relatively easy jobs and part-time jobs and we'll see how it goes. Im worried that between my fuzzy brain, lack of memory, lack of stamina and periodic days when i cant get out of bed, I might fail but at least I'll have a little income and it might help my disability case (to fail).

Careful with the money in the 401K, if you can borrow from it you need to pay it back or the IRS slaps you with all kinds of fines and penalties. Check with an accountant before you touch that.

Good luck!



I'm sorry to hear all of this! Your symptoms sound so much like mine before I was diagnosed, I ended up dx with six different autoimmune diseases (lupus, Hashimoto's thyroiditis, celiac disease, RA, psoriasis, autoimmune hepatitis) plus fibromyalgia. But then my neurologist tested me for Lyme disease and it turned out to be positive. Apparently many autoimmune diseases can be triggered by viral and bacterial infections, and a big culprit is Lyme.

In any case, if you do go back to work, you will likely end up smack back in a flare again, IMHO. I was allowed to work from home for more than a year, and still had to quit and go on full disability because I couldn't take the stress of deadlines and preparing for telecoms. :(



Wow! You sound like me a few years ago. Lupus is like that. Feel awful for weeks then bam! You are okay again. It’s so frustrating. If I were you I would give it another week to see how you are doing before going back to work if you can. Just in case it comes back.

I would also be calling the rheumatologist every other day for a cancellation appointment or something because you need to get on some meds to calm down your immune system before it really wreaks havoc on you. I’m not a doctor but you sound just like I did.

One thing I thought if is do you have a short or long term disability policy through your employer? That is how I survived until I got SSDI. It was rough and I had to cut out a lot of things and borrow a few times but we made it. Also if you have a Catholic Charities in your area or an Area Agency on Aging they usually have resources. In Texas if you call 211 they can help too. You can also use a 401K without huge penalties if you are using it for a health reason. Check with your 401K company first though in case things have changed.

Unfortunately it is impossible to predict the future of how you will feel. Try to stay working if you can until it’s impossible. In the mean time try hard to save money to put away for that long wait for SSDI. If you have not been officially diagnosed with Lupus or RA be sure to get a life insurance policy and short and long term disability if you can ASAP. After you are diagnosed you will be uninsurable for these.

Sorry it’s not easy and exciting information. I’m only sharing what I had to go through. Fortunately I already had short and long term disability way before any diagnoses. It really helped.

Please take care of yourself and rest whenever you can! Hugs!

Oh and I just looked to the side and saw the Go Fund Me add. I used this when I was in the hospital and needed a lot of medical equipment to come home and no money to pay for it. We signed up and got a Go Fund Me campaign going and emailed friends and family which also really helped us!

Does your state have short-term disability income that you can apply for?

It sucks what you're going through, and I experienced some of these symptoms myself and the extremes of feeling fine to feeling like complete crap one day to another. in regards to a rheumatologist, do not wait around for the doctors office to call you back for an appointment--call them. or better yet, go there in person or shop around for other rheumatologists that would take you sooner. And with your job, I don't know how understanding they are, but see how they can compliment/assist your needs with returning to work, etc. Because me, personally, I don't like to miss out on things due to my Lupus in addition to me being stubborn and hard-headed, and if I were feeling fine, I would go back,lol. Or try to find a less demanding job so you'll get some sort of income. And as for your sons, having a lack of support, understanding or empathy sucks, especially for physical things. I can relate because I have two sisters who I think time to time forget that I even have Lupus and get aggrevated when they want to hang out and do stuff, but I'm just not feeling up to it. All I can say is that at least for social support, you have all of the wonderful people on this site here for you. Keep your head up & best wishes for you!

BTW Binder and Binder are "very" good at helping people get on disability. This is from a source that works with people with major disabilities. Don't always think that you'll be rejected. Pursue Binder and Binder. You don't have to wait for them to call back.

Are you getting enough sleep? There's always melatonin--just a suggestion.

You got to hold on.

Thank you all for sharing useful info with me. Today I called about the 401k and told the lady my situation. She said I could borrow half of it and they would mail me a check by June 13th. this is a loan and if I am able to return to work they would only take out 18.00 each pay period until it was paid back. If I can't go back to work they will let the IRS know and I will have to pay a 30% penality on it if I have not gotten awarded SSDI yet. So I went for it. Gotta have money to live off of. I live in WA state there is no short term disablilty and I don't have any long term disablitlity with my job. I was able to get food stamps and they will mail me something next few days. I have lived in public housing for 10 years now. Single mom with child. Now that child is still living here and will be 19 yo next month. He just got hired around May 1 fast food job. Seems like anyone I contact to help me wants to know all about his income and want to include it in household income. At least in this public housing your rent is based on your income so it will most likely go way down. His money is his money, not my money. In addition to all my heart meds I am also taking meloxicam and plaquenil 200 mg one per day. Also Vit D heavy dose once a week. my health care insurance is the bottom of the barrel. I qualified for it and receive the free Medicare insurance. You basically pay for nothing because my income was so low, but you must wait for referrels to be approved before you can make apt with anyone. Hurry up and wait, I call it! I am also waiting for Binder and Binder to call me back. I was told to not try to file a SSDI claim without a lawyer helping it along because you most likely will be denied and 3 years later still waiting to be approved. The stress of that would kill me for sure! Anyway thanks to all of you that seem to be in the same boat. I feel like I am going to lose my mind with people that no nothing about lupus or what it does to you giving me stupid suggestions! I am 53 yo.

You don't have to withdraw that amount as a loan. if you're having financial hardships, you can withdraw it to live on w/o penalties They won't volunteer this information. You just have to pay taxes on the withdrawn amount: 10% federal. Since your state has no income tax, should be a relief. Best to withdraw a little at a time, so you don't lose any earnings.

If you take the money out as a loan, it can easily go into the penalty zone and that 30% can double. Besides you don't have to take it out as a loan.

Hope I caught you before you withdraw a lump sum.

Here is mine. I went from healthy to taking 12 pills a day. From working at walmart 40 hoyrs a week to having my gallbladder rupture and needing it taken out. To the day I came out of the hospital to a pink slip from walmart saying I was sick to much. So I started unemployment. Six months later they told me I could no longer draw up because I haf not worked in the last 6 months. I went from being health to having lupus R.a, raymans disease and then 4 months ago. Neurplopy. Deoending on your state will be the time you wait. Here in alabama its 18 months. My mom lives in georgia I got hers in 180 days. Lawyer yes. Because most of the doctors offices will not give you the test results or finding. So doctors wont even tell you you are disability. I went with a small firm no a large one I like to call and talk to the lawyer not his secretary. I dont like leaving messages for him to get later. Good luck.