I have Lupus. Still sounds weird for me to say. The other night I posted a picture on IG telling my followers that was my official diagnosis. I had someone come back and comment they wanted to know how it came about. Or how we finally figured out this was the disease I was dealing with. SO here’s my story from beginning of pain to diagnosis..
My pregnancy with Maddie was a rough one. I wasn’t sick or anything like that but my whole body hurt me. Bad. My spine would give out on me or I would get tremendously dizzy and have to sit down. I would even get short of breath very quickly but always thought it was just because I was carrying a big baby and had just carried two babies shortly before. When I look back on it now I think this is when my symptoms began. After having Maddie, I felt back to normal but would only have the occasional ache and pain in my hands, wrists, knees and so on. I just thought it was because my body had been through a lot within 15 months. Well, maybe that’s not the case after all.
Later that year in the fall, my body started aching all over. The weather was turning cold or colder than it was and I hurt all over. I thought it was the flu or something. Nope, not the flu past Jen. I hurt and I hurt bad. I cried when I got out of bed. It physically hurt me to lift my sweet baby out of her crib. I would cry every time I felt like I was letting my kids down and I had no clue what was going on. I went to a regular physician and they prescribed me Mobic. I started on that prescription and after a week of taking it I felt better. The pain just subsided for a while, so I thought maybe we had cured whatever was going on.
Maddie’s first birthday came and I noticed a weird pain on top of my feet. My back also hurt me so bad but again I thought it was from something else; a wreck I had while I was pregnant with the twins.
The summer passed by and then the fall came of 2014. My wrists started hurting. My feet, my shoulders, knees, fingers, elbows, toes, neck and jowl. You name it and I was in terrible pain. I started taking Aleve every 12 hours and it helped a bit. The only thing that had continued to hurt was my wrists, occasional knees, tops of feet, occasional back and jowl. I got use to the pain. I know you all know how little help we have with the babies so I just put it off because I thought it would just go away again like it did the year before. Boy, was I wrong. I had a colonoscopy/endoscopy in December. They took a good many biopsies which didn’t allow me to take NSAIDS for two weeks on the account it could have made my stomach bleed. I might would have taken that risk if I would have known the amount of pain I was going to be in within a week of not taking any anti-inflammatories. I could barely walk. Christmas was coming up and I just cried and cried thinking I was not going to be able to celebrate this magical time with my babies because I am hurting so bad. One Saturday shortly after the pain came, Matt kept the kids while I ran to a doc in the box. I don’t have a regular doctor so if I ever need anything I just run to a fast (slow-aren’t all doc in the box slow?lol) doctor. I told her she needed to take my blood and test me for RA because I was certain that’s what I had. I wanted her to run that test so it could come up positive so I could go see a Rheumatologist. You have to have a referral to see a doctor like that so the blood test was all I needed for her to refer me. They called me on Monday saying I had the RA positive and they would send me to a specialist. She did prescribe me some mobic until I could see an RA doc which helped a good bit just not all my pain. I was able to walk and not be in awful pain Christmas morning, so I was happy about that. The RA docs called me the day after Christmas to setup an appointment. Apparently rheumatologist are very hard to get into. The soonest appointment available was in the beginning of February. Well, ok then. I guess I have no choice but to wait, right?
I was just mad at this point. I thought my pain would just go away but till this day I still have not had a day pass where my wrists, ankles, knees, back or jowl didn’t hurt me. Why cant it just go away? I kept asking myself that question over and over again. Please just let it go away and let me be alright. I guess that’s just not what he had planned for me.
The waiting began. I ran out of mobic and that doc in the box wouldn’t prescribe me anymore, even after having the blood test. I was pissed. I couldn’t go again so I just started my Aleve every 12 hours again and taking lots of Tylenol in between. It got me there. It didn’t help a whole lot but I made it to the appointment. I told him everything that hurt, I told him to fix me. Please fix me. I have kids and a husband who need me. I don’t want to live like this. Please, sir, please just help me feel better so I can be the mom again who I love being and the wife that loves taking care of her husband and household.
Well, its not that easy. I had a bunch of x-rays done and a TON of blood taken. He told me whatever it is, we have caught it early because your joints are not that badly damaged. He noticed something in my toes though. They were starting to curl up under my feet which is a sign of RA so he assumed that’s what we were dealing with. That also explains why my toes are always numb. I think I might be walking on my own damn toes. Literally. He prescribed some medicine for RA until we got the results back. It was going to take two weeks.
During those two weeks, my stomach started hurting. Bad. This medicine was affecting everything that went wrong with my stomach before. I called my GI doctor to let them know everything and they put me on a higher dosage reflux medicine to protect my stomach from all these high dosage anti inflammatories. To be honest with you, I was so mad. I thought I had RA and it was making me so mad that the two diseases I have ( RA and IBS) were conflicting with each other. The medicine from RA was hurting my stomach and my stomach couldn’t handle this medicine. I have finally began to feel good about myself until taking this medicine. It made my stomach bloat, cramp and all the above. It physically hurts to wear jeans because of my stomach issues now and I want to. I want to be skinny again, I want to feel pretty. I’m done wearing yoga pants and pajama pants every day, all day. Or at least I thought I was.
The two weeks went by and I stopped taking that medicine a few days before my appointment because I figured why not? I am going to see him again anyways and he is probably going to put me on a different medicine.
I got to the doctor and waited and waited and yes, waited some more. It was hot as hell in there. I was nervous and I had no clue why. There were all old (and I do mean old) people sitting next to me falling asleep and I just thought why am I here. Honestly. Why me? JENNIFER VANZANT was finally shout out. I happily left that waiting room and went into a room by myself. Guess what? I waited some more! Make sure someone good keeps your kids if you do go to a rheumatologist because they damn for sure take their time. He finally walked in my room. Asked me how I had been doing and blah blah. I told him how the medicine was affecting my stomach and he told me to go off of it. Well, that’s done. He started reading my lab results to me. This is where I get kind of frustrated. He kept talking about RA and while reading my results he went on to say “oh that’s a lupus positive” and after about 10 more of those same statements he said “yup, that looks like we are dealing with.” Wouldn’t you think doctors would read results before their patient came? I mean he didn’t know I had lupus until he read the results… in front of me. THEN, didn’t tell me anything else about it. Just that I had Lupus and I needed to take these two drugs he was giving me and to come back in 6-8 weeks. WTH man? I am young, I know nothing about this disease and would really like to know just one tiny thing.
Because I didn’t know what I was dealing with I decided to search the Internet. BIG mistake. Don’t do it people. It will terrify you. Why is it that people put only the negative stuff out there and not the positive? I just don’t get it. I spent all last night crying about it. I literally could not calm myself down because I was terrified at what could happen. What if I die? What if I need a transplant in the future? What if God takes me off the earth and I leave my babies? I want to watch them grow. I want to watch them have babies and I want to hold their babies in my arms. I want to run and not feel pain. I want to be ok with this. After an hour of ugly crying and straight up bawling, my parents were able to calm me down via phone. Thank God for our parents, right? I just hope my kids will be saying that when they’re older. I am ready to fight this thing and I am ready to be ok. To be ok with this disease and live a happy full long life. I want to have another baby. I want to be healthy and not hurt. I know this isn’t possible.. to not hurt with this disease but I know I can spend the rest of my life not hurting some days and I am more than fine with that.
I think the key to kicking this disease in the ass is education and a good doctor. Don’t get educated by the web though. Please don’t. It is just negativity and it will scare the hell out of you. A good doctor is important. One that can educate you. Not only prescribe you medicine but give you information about your disease, make you feel good about hitting the disease head on, and tell you other things you could possibly do to help. Like vitamins, home remedies. Anything. The reason I am saying all of this is because I do not like my doctor. I have decided that. Thank goodness for IG and friends nation wide because one of my friends know a specialist right here in Birmingham and I will be giving them a call very soon.
So that’s my story. I got a shot the other day and have felt less pain than usual. Still hurting a lot so I will probably be going to that specialist before my 6-8 weeks is up with the other doctor. If you’re hurting, go to the doctor. It could be something. As moms we need to take care of ourselves first. As hard as it is, but they need us. They need us to be healthy and happy.
As for you Lupus? I am coming for you and you will soon be “hidden” inside my body instead of making me hurt every day.