Hi! I'm a 46-year-old mom of four diagnosed with Lupus on October 30. I went in to the doctors in September because I realized that I had been pushing through a lot of pain and fatigue for a long time and was just tired of feeling like I was 90. Thinking maybe I had fibromyalgia as I have always had point tenderness as long as I can remember. My nurse practitioner said, maybe, but lets run some tests. Well, I came back with high blood pressure (never had that before), high cholesterol (never had that either), and high CRP and ANA. Lucky for me, she suffers from mild lupus and took all of this very seriously, referring me to the best rheumatologist ever. JMHO. :D During the month and a half that it took to see the rheumatologist I had two pretty big flares. I was working full time, 10 hour days four days a week for the local health department under some pretty heavy fluorescent lighting and had asked my boss to see if we could modify the lighting in some way because I seemed to be extremely sensitive to it. She said she would look into it. So I finally saw the rheumatologist on October 30, having been warned that the visit would consist of lots of questions, exam, lab tests, and then I would be waiting to be treated until everything came back. After all the questions, exam, and tests, he said he rarely did this, but I was a poster child for lupus and he was treating me starting that day as I was so miserable. He also said I was so sensitive to fluorescent lighting that it was almost toxic to me and would throw me into a flare if under it for very long. Thank the Lord! However, the next work day I came in, feeling wonderful because the steroid taper had kicked in, and was fired for missing too much work. Even though I had vacation time and sick days. What a kick in the teeth, especially since I had asked her to change the lighting so I wouldn't be sick and it had been a good month and she had done nothing. So, luckily I have an awesome husband who took it in stride and said we would make it work. Since then, just going to the store grocery shopping for short periods of time is all I can handle. 20 minutes or more and I'm shaky, sweaty, lightheaded, nauseous, and everything starts to hurt. I also have been having problems with five day long migraines and the rheumatologist put me on a baby aspirin a day, which makes me wonder if there is vascular involvement. My nurse practitioner sent me to a cardiologist for heart palpitations and I ended up having an echocardiogram, stress echo, and a 48 hour holter monitor. Still waiting for results on the holter monitor, but the echos were normal thank goodness. However, I have been having progressive shortness of breath that has gotten to the point that even switching out a load of laundry has me sweaty, out of breath, weak, and it is necessary to rest for an hour before I can do anything else. The cardiologist sent me for a pulmonary function study and diffusion test that ended up showing moderate interstitial lung disease which has me freaking out more than just a little bit. I see the rheumatologist in January to go over all of my test results as far as what else is affected. All I know is that I am so fatigued all the time, the pain some days is all I can deal with, and I'm just starting to feel out of control with it all. I'm 46 and on 10 medications with more in the future I'm quite sure. How do I deal with all of this? I have a great husband and kids who make sure that I rest a lot, never go shopping alone so I don't have to lift anything, and do more around the house than I ever could. I just want to feel normal again but I'm thinking that's not going to happen. Thanks for listening to my story and vents. I'm glad this is available for us to get support and support others. :D
One day at a time friend..be kind to your body although there are days it's not too kind to you..know your limitations and except that your day could present you with more challenges than you really want to deal with as a positive attitude will carry you forward..
Don’t give up and take 1 day at a time. I experienced a lot of the same things as you…and then a miracle. I never thought I’d be myself again…but a few months ago I started getting my energy back…(after a few years)…started to breathe better…started walking, etc. I feel so much better…but always have in the back of my mind, “when am I going to get hit again.” But I’ll enjoy what I have for now. good luck to you. glad you have a great family…that helps.
I feel your pain. I was diagnosed a few months ago too. It has been a day to day learning situation for me. I enjoy and do what I can on good days and rest on the bad. I have learned not to plan activities too far into the future.
I will see my doc in January for follow-up on how my meds are doing. It sounds like you have a good support system. Hang in there and take it one day at a time.
Welcome. I know it is really too bad to be welcomed into a group such as this but it is reality and it is a great group even though it means we all are fighting Lupus. First of all, have the doctors ruled out some of this being side effects of all the drugs they started you on? That was my first thought even though you have a lot of problems that are very real. Another thing is your job....how can they fire you legally? Did you have short and long term disability? What about FMLA being offered? Another thing that will be hard is on good days you will want to overdue but try not to do that. This is something I rarely do. LOL It is so great to have a good day that I just go and go and love every minute of it. Try to find your niche of what you can do. Do you have any relaxing crafts? Cross stitch or knitting etc? I have gotten into quilting. I have also found that I have more opportunities to listen and guide my children even though they are adults and I have a lot of friends I talk with on the phone. These are opportunities in my mind to be a good listener. Good luck and gentle hugs!
I too have interstitial lung disease. I am pretty sure it was methotrexate that caused it. PlAquenil helps over all with lupus.
Welcome to the 'group'....it's an amazing group of people with lots of good advise. You will have to define your own boundrie's. Rest as much as you need, and learn to not beat yourself up for things you can no longer do. It's wonderful that you have a supportive family, so many of us don't. Listen to good music, read, if you like too, find good TV programs, talk to friends, find things that can keep you feeling good about yourself. Good luck, and feel better.
First of all: lawsuit.
I believe the federal law (Americans with disabilities act) makes what just happened (getting fired for being sick, AND their refusal to accommodate your needs) ILLEGAL. I would consult a lawyer. I know you’re dealing with lupus but you are going to miss that income and you were done a terrible injustice.
Meanwhile, also go after social security disability. Do not wait. Do it while you have a doc who is in your side and understands the severity of lupus. Get help with this too.
Second, do not give up hope. It is possible to reclaim your quality if life. I have. I have, over the course of 21 years, experimented with all kinds of deliver and alternative medicine and have found things that work for me. I’m currently only on a low dose of cymbalta (60mg) for mood and klonopin (1mg) for sleep.
That’s it.
At points I’ve been on 9 drugs plus chemo and transfusions. And my full time job was going to appointments.
Now I write and perform funny songs (several gigs a month, have 5cds out) and teach guitar out of my house (10 students a week).