STILL SURREAL

I’m Monnica Forsythe and I was diagnosed with UCTD in August of 2016. I was 37 at the time and have been dealing with symptoms of an autoimmune problem since I was about 16 years old. I went to different doctors over the many years due to varying problems such as hives, rashes, fatigue, joint pain, fainting spells, reoccurring sinus infections, ringing ears, allergies, possible PCOS, multiple miscarriages, high risk pregnancies etc. Nothing concrete would ever come from my doctor visits. Most of these problems would come and go and usually didn’t occur at the same time, but I did have a couple of years mixed in that when looking back I was super ill, but just somehow powered through it. It all came crashing down on me in 2015 when I was about 4 months postpartum with my second child. I kept waiting my symptoms out thinking all this pain, fatigue, hair loss, has all got to do with the normal stuff that comes along with just having a baby. The kicker for me in which sent me to my OB Doc was intense pain that I was having in my pelvic area. I was also having low grade fevers and night sweats. It was pain that was night after night that I let go on for about 3 months before telling anyone about it. So I told my husband who is an E.R. Doctor and he said that I needed to get an appointment right away and that my pain wasn’t normal (I kind of had gotten used to having pain so often and being brushed off by some of my doctors that I have or had forgotten what’s normal). While my OB provider did the exam she thought I was having abdominal pain rather than pelvic pain and then started a series of questions which then led to a bunch of lab tests and a referral to a GI doctor. My OB provider was concerned that I had inflammatory bowel disease because I was also having diarrhea everyday for the prior 3 months. Got the call a week later notifying me that I had a positive Ana, positive rnp, and borderline positive anti double stranded DNA and needed to now go to the rheumatologist. I had never heard those words before that day so I really didn’t know anything about these autoimmune diseases. The wait time was supposed to be 5 months for me to get in to see Rheumatology. In the meantime I went to GI and had a colonoscopy which was normal and the diagnosis was IBS. I was miserable I couldn’t imagine having to wait 5 months just for an initial visit to rheumatology. Luckily my husband was able to get me in sooner I ended up waiting about 6-8 weeks. My first appointment didn’t go as expected for me, I again felt that my symptoms were undermined and I didn’t really feel like he wanted to hear everything that was happening to me. I left my first appointment with no answers accept for a diagnosis of hyper mobility syndrome and positive ANA. What the heck? Went back with my husband for the second visit so that he could help me relay everything that was happening to me ( I also had/have a lot of the brain fog and seem to forget things a lot) and that didn’t really feel like it helped. My husband who is a colleague was pretty much treated like he shouldn’t have even been there with me. It was appallingly, but I was desperate for some help and he did put me on plaquenil so I figured at least he is trying to treat my symptoms. I went for the third time after being on the plaquenil for about 3 months which worked by increasing my energy to a functional level. This is when he changed my diagnosis to UCTD. He didn’t even tell me. He kept taking about Mixed Connective tissue disease, but he didn’t tell me he was diagnosing me. I didn’t even know until I looked at my visit summary. I could now take care of my baby and 3 year old without feeling like I was going to die. Also in that time frame I was referred to an ENT doctor because of an enlarged submandibular saliva gland (confirmed through Ct scan) which I’m still not sure if that is going to get taken care of.

For some reason the ENT doesn’t think it’s sjogrens, although I do. Anyway, this story as you all know can go on forever. The disease and the symptoms have changed my life. I’m worried about being able to take care of my two young girls. They are so full of life and joy and I just want to be able to enjoy it with them. I have such a blessed full life and I feel like it’s being taken away from me in this weird invisible way. I just want the disease to go away. I’m still in awe and shock that I have something that will probably not go away and that is depressing. In some ways I’m very fortunate to be married to someone who has so much knowledge and believes me and wants to help me get well, but I feel like it also puts a lot of pressure on him that he can’t always do anything about. My husband thinks I have Lupus and he even thought that back when we were first married. He ordered the Ana labs back then, but they didn’t show positive and that was about 12 years ago. So much has changed for me in the last year just trying to wade through it day by day and really trying to soak up every good little moment because I know how fast it can change. Thanks for caring and reading!

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