Back in August 2007 I woke up one morning with super swollen hands. They were so swollen my rings were stuck so I ended up going to the doctor but nothing came from that. For the next few months I didn’t have any swelling but I was more tired than normal and just didn’t feel right. In November my feet and ankles became swollen and the next morning my eyes were really swollen. Off to the doctor again and they tested for a few things but only came back that I was hypo thyroid so they started me on medicine for that. My feet, ankles and eyes continued to be swollen off and on for the next month and I slowly was gaining weight. They decided to admit me to the hospital when I gained 30lbs of fluid in 2 weeks. I was so uncomfortable, clothes and shoes didn’t fit and it hurt to walk. I just wore sweatpants and ended up wearing these huge slippers because it’s the only thing that was comfortable and fit.
For some reason when I was admitted they put the IV in my really good vein in my left arm. I told them it wasn’t a good idea because my other arm sucked. They had to stick me several times in the right arm every time they needed blood which was multiple times a day and at least 10 tubes a day every day I was in the hospital which ended up being from Dec 12-17. I remember them throwing around things that they were testing for and what they thought it might be but they weren’t sure. They needed to do a kidney biopsy to find out more. I asked them to wait to do the biopsy until Bob could get there but they couldn’t wait so I was terrified going into this alone. It was the scariest and most painful thing I’ve endured (and I’ve had 2 c-sections since then). I think I may have broke the nurses hand from squeezing it so hard. Luckily Bob was there after which made things a bit better. He was there through everything with me and only left my side when he had to work.
I left the hospital on the 17th after being put on a few more meds including prednisone, which is the devil. On the 27th I was at work and received the call with my diagnosis, Lupus Nephritis (lupus that attacked my kidneys) and RA. So I now have 4 diseases and have to figure out what’s next. Dr appointment scheduled for January. I honestly can’t say enough about my Nephrologist, he’s amazing and I owe him my life. Bob wasn’t able to go to my first appointment but my parents did and I’m so glad they did because I couldn’t remember half of what was said, I was still trying to figure out what the hell Lupus was. The dr spent 2 hours with us and I ended up leaving with several prescriptions (a total of 19 pills a day).
Six of those pills ended up being chemotherapy drugs. The side effects of those along with the steroids were horrible. Not only did I have stretch marks on my feet and ankles from all the swelling, the prednisone caused me to get tons of stretch marks behind my knees. It was so painful, I would wake up some mornings just holding the backs of my knees. I tried ice and heat and everything else because I didn’t know what was causing the pain. Once I noticed the stretch marks I figured it out, it did feel like my skin was ripping so now I knew why. I also got the “moon face”, lost tons of hair (Bob said it was like living with Chewbacca), weight fluctuated constantly, hair didn’t grow where it normally does and grew places it normally didn’t. The hair that I didn’t lose on my head became very light in color, dry and brittle. You could see my scalp because it was so thin. Looking back at photos I should have just shaved it off. I asked Bob why he didn’t tell me how bad I looked and he said he didn’t notice since he saw me everyday. Even though those pills caused all of that and more, it put me into remission for the most part. All my swelling went away, my kidneys started functioning properly and my blood work was normal. It was an amazing feeling to hear that after being on all of those meds for 2 1/2 years. My doctor had told me originally that I would be on them for 3-5 years depending on how everything went. Bob and I were getting married and wanting to start a family so I had asked to get off of those meds. Since I was doing so well so quickly he said it would be fine.
I’m proud to say I haven’t had to be on those particular meds since October 2010 and I hope to never have to go back on them. I’m still considered in “remission” but I still have flares. I haven’t had any big ones but I have a ton of small ones. I’ll be on medicine for the rest of my life but it’s worth it if it keeps me alive. Everyday I wake up I’m in pain but I’m alive and I’m thankful for that. I don’t think I’ll ever know what it’s like to not be in pain again, I don’t see a cure for any of these diseases anytime soon.
I’ve always had a hard time explaining what it’s like to have Lupus and how I feel but the Spoon Theory is the best way I’ve found. You can read that here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
I shared this spoon theory with people when I was first diagnosed but I think most people have forgotten. In the beginning I did look “sick” and I think they understood. The problem is now I don’t look “sick” and I think they forget that I am and anyone new that I meet doesn’t know anything unless I say something. It’s such a hard thing having “invisible” diseases. I’m not asking for sympathy or anything, I’m just wanting understanding. More people need to understand these diseases and what people that have them go through. This is the reason my house is a mess most of the time. I was pretty lucky because Bob didn’t mind. Most days he would do the vacuuming and dishes and I would just worry about the dinner and laundry, laundry definitely wasn’t his thing. A lot of people don’t like taking their kids to the grocery store with them but the main reason I don’t is because it just takes too much out of me. It was nice when I was able to just go whenever because the kids could stay home with Bob, it’s so weird not having that now. What took me days to do before might end up taking me longer since it’s just me now. I literally have to think everything through and decide what I should attempt to do first. I miss out on so much because of this and it’s frustrating. I used to be such a planner but now I can’t really plan anything, I just have to take it one day at a time and hope I feel good when it’s the day I want to do something. I’ve had this disease almost 8 years and it doesn’t get any easier.
Lupus sucks. Having other autoimmune diseases to go along with it sucks even more.