I need to share my story :(

[whatdayisit11to7Nrse]

Hi AN

Sorry this is long.

I not only need some support from other nurses with illnesses but I'd like to share something that has happened to me. It was a mystery, until it risked my life. Now I wonder: Is my situation more common than I think? Maybe or maybe not, but couldn't hurt to share it.

I have systemic lupus, diagnosed 2013. It was labeled mild, with *periodic* moderate flaring. Bad flares got me finally getting medical attention, and diagnosed. So I got on the right track with treatment, and my lupus was never a huge issue since then...until more recently.

Suddenly, about 8 months ago, I found myself battling flare after flare. More times than not I was ill. Each flare increased in intensity, duration and frequency. It actually has actually started involving organs. My spleen was enlarged in February. I was pumped full of decadron and got better only to get worse again. This has affected my job terribly.

I keep coming back from a week or two of absense and I get sick shortly after and doc takes me out of work again. And for the longest time I did not know what was triggering my SLE, because the trigger was insidious. But even though we discovered the culprit a few weeks ago, my lupus is on a roll now and we have to fight it aggressively.

I was just told yesterday that we are going to start IV chemo therapy. My doctor called it, "putting the fire out before it gets any worse" and hopefully this will kick it back into remission, but I am not convinced anymore.

It all started subtly several month ago with dry eye symptoms. Eye drops helped significantly for a few months, until a couple of months ago, they were no longer as effective and my eyes rapidly got swollen, extremely dry, red and itchy. The skin actually started peeling off and flaking onto my lashes. I saw an eye doc in march, and had oasis plugs inserted and they helped, but their effectiveness only took care of the dryness, not the swelling, flaking or redness which had gotten worse. This became horrendous and left me unable to function at work or even think straight. Not only that but around this time my rheumatoid factor and smiths antibodies skyrocketed and my joint and nerve pain was unmanageable.

So now I had two doctors treating me aggressively for two "different" things and there was no significant improvement. Eye doc suspected an allergy, but the Lotemax drops were not working as expected. ABT drops did nothing at all. Cultures came back negative for infection. And any relief I did get was temporary.

At work, I went from being someone you could always count on, to someone you were scared to see on the schedule. Because you didn't know if I would be well enough to come in...you didn't know if you'd be working short on my shift, or working a double to cover my shift. It's become that unpredictable.

Doctors sent me to other doctors who sent me to more doctors and I felt hopeless. I still feel hopeless. But a new rheumatologist who I do have more faith in, is actually very hopeful...I'm just too scared to even try to be positive anymore.

The only thing worse than being sickly, is getting 100% better and then getting terribly sick again, over and over from one day to the next. I never know what kind of day/week I am going to have. And it's driven me to depression and anxiety.

Anyway, the medical "mystery" turned out to be an allergy to acrylates, which were in my cosmetics, my paints (that frequently did as a hobby) and pretty much half of everything I had in my house!!!

The reason that the Lotemax drops only helped a little bit, was because the problem was not in my eyes. It was the skin around them that was inflamed.

The new doctor was the one who picked up on this. I got patch tested and it was confirmed. He is convinced that this insidious allergy had been building up and triggering an immune response, leading to the rapid progression of my lupus. But he explained that just because my eye and skin problems are at bay, that I can't expect my lupus to calm down over night. It's been triggered for close to a year and now it's in full force, so we need to treat it aggressively to stop it now.

I am going to do IV methotrexate. I'm incredibly scared. And I was told that I cannot go back to work and can't give my job a date for my return.

They've been extremely supportive. But IF this even works, I'm going to have to prove that I am back to being that once reliable worker that they can depend on. I am just, so scared. And I feel very low, and have a lot of self doubt. I know I am being hard on myself, because I didn't ask for this, but I still feel ashamed.

Through a lot of my research I found a lot of documented cases of allergies to benzates and other preservatives, as well as acrylates. Sadly these chemicals are in everything, even majority of foods. I think it is possible that many people are unaware that they have these allergies, even if they are mild. They may be wrongly diagnosed with other skin and respiratory conditions, having no idea that it is an allergy, and could be treated more accurately, especially by avoiding the culprits. So I just wanted to share. Also wanted to just get that all out, for me, because I feel so low and maybe someone can say something of comfort or wisdom. Thanks AN

[HyzenthlayLPN]

((((HUGS)))) I feel for you. I went through a similar ordeal when I was in my early 30's and went from being a very active mother of two who worked 60 hours a week, went to school part time (earning straight A's) plus volunteering with a horse rescue to rehab abused horses....to being so sick I could barely get out of bed. Thankfully, my FMS (fibromyalgia syndrome) went into remission about 6 1/2 years later.

I hope your treatment is fully successful and you are back to your normal soon!!

[whatdayisit11to7Nrse]

((((HUGS)))) I feel for you. I went through a similar ordeal when I was in my early 30's and went from being a very active mother of two who worked 60 hours a week, went to school part time (earning straight A's) plus volunteering with a horse rescue to rehab abused horses....to being so sick I could barely get out of bed. Thankfully, my FMS (fibromyalgia syndrome) went into remission about 6 1/2 years later.

I hope your treatment is fully successful and you are back to your normal soon!!

Thanks so much for that thoughtful comment

[Dina116]

I can truly relate and understand what you are going through. I felt like I was reading my life story, as I read your story. I've been a nurse for 20 years, and found out in 2011 that I have psoriatic arthritis on top of having type one diabetes for 30 years. I was treated by my rheumatologist with methotrexate, and a biiologic at first. The first year and a half I was doing well enough to work. But after that I went down hill with excruciating flames of joint pain, unable to sleep, etc., etc., etc., I had worked in a hospital doing acute dialysis patients for the last ten years. So that being said, I was doing on call and could not continue, as it interfered with pain and sleep. So luckily my hospital also did chronic patients so I went on to try doing this part time. Well, of coorifice I couldn't do it, due to how involved dialysis is so physical also. So now I am trying for disability, but have been turned down twice and am waiting for a court date to see if I can get it. I would love to do something a few hours a month in nursing. I love being a nurse, and I miss it terribly. But the thing is, you never know day to day on what knd of day you will have. One day I feel goo then the next two or three I feel really bad. You just never know. I hate having to deal with this. At the beginning of my nursing career, I worked as an oncology nurse, and I enjoyed doing that also. But my mother ended up getting breast cancer and it really was hard to continue doing that. So, I continued only for about a year and a half after my mother had passed because I was very depressed. So I am at a stand still, awaiting to see if I get disability. It's very hard, giving up a job that I truly love. But when I read your story, it was like a mirror image of mine. So what are you doing now? Are you trying for disability, or are you going to try to continue working? It's not easy, as this has been my identity a good part of my life. It's good to talk and relate with someone else who is going through it also. If I can be of any help, please let me know. I know that I can turn to God and pray for His help. Good luck and God bless you. I just wanted to let you know that your not alone, and if I could be of any assistance in the future, please contact me, and I will give you my e mail. Take care.