Chromosomes and a Medical Mystery…

   I suppose before we get too far into this I need to tell you our backstory. What we know so far and where we’re headed. This one may be a little long so hang with me…

   First about me…I randomly got sick back in 2009. In February of that year I collapsed while in Grand Cayman and got vertigo for 2 days. When I returned home I got the flu. Over the next few months I started having random muscle aches and joint pain. On October 27, 2009 I woke up to find my left knee swollen and my leg blue. Two days later the right side matched. It started jumping to all of my joints. Our first thought was I ingested something while in Grand Cayman like a bacteria but nothing came back positive.

   I was tested for Lyme Diseases, Lupus, RA, etc…I was put on Methotrexate and Prednisone among other things but it didn’t really subside until I quit taking birth control. The entire time the only constant had been the Yaz. (Ask me how I feel about Birth Control, I dare you!) 😉 All of a sudden the swelling went away. I had been to multiple Doctors, had multiple tests, Xrays, scopes, etc. We even went to Shands but nothing was found.  They did diagnose me with Fibromyalgia and an unidentified autoimmune disorder but that was all they could tell me. I finally asked the Doctor at Shands if she thought I was dying at a faster pace than anyone else and if not I wouldn’t be back. I stopped all meds and haven’t taken any since. Whatever this mysterious illness is only flares up when my hormones shift, when my body temperature changes dramatically, or when the barometric pressure drops. I’ve learned to just deal with it. 

   Fast forward to today and I haven’t had any other major swelling like back in 2009…(I also have never taken birth control again…jus sayin’…) Anyway, aside from the mysterious autoimmune disorder I don’t seem to have any other major health issues. The only issue with this nonsense is that it effects my hormones or is effected by my hormones rather…so with pregnancy comes hormone changes and with hormone changes comes…mysterious illness! (insert eye roll) We just have to wait and see what happens…As for all of my reproductive organs…the tests all say they are working fine. (obviously there’s a glitch in the system somewhere we just can’t find it!) I’m clearly a medical mystery…(any offers for book and/or movie rights will be gladly accepted!) 😛 

   Now for the hubs! Craig has a genetic chromosome abnormality known as a Translocation. Basically a chromosome split and re attached itself to another one. Translocations can cause a myriad of issues like Cerebral Palsy or major birth defects but the one Craig has only has one side effect…Miscarriage. According to our Maternal Fetal Medicine Doctor IF we can ever get pregnant we have a higher than average chance of miscarriage! Yay for us! 🙁 

This is not Craig’s but this is one example I found online of a chart for a Translocation. Its all a bit overwhelming.

   It’s very strange thinking to yourself…well I’ve gotta get pregnant first in order to lose it. I know that sounds harsh but it was the exact thought I had as the Doctor was explaining everything to us. This should do wonders for my anxiety. Sigh! As you can see we have a lot going on over here. We’ll cross the second bridge when it gets here but we have to get across the first one for now.

   I realize many people have it way worse than we do and we are very blessed in so many ways. Please don’t ever think I am complaining or whining about all my problems…I am only sharing this with the hope that someone else may feel better about their situation. Whatever the good Lord wants to happen will happen and it will happen in HIS time. We know this. 

   As for now…I have an appointment in the am to test my Progesterone levels and if that doesn’t check out it’ll be on to tests for Craig and then medications like Clomid for me. I am very hesitant about the Clomid because what does it do…alters my hormones and remember what tends to arise when my hormones shift…that’s right…the mystery illness. Please pray for peace and guidance about the medications. I have really bad anxiety about my body attacking itself again. It was a nightmare and not knowing is the scariest part. Your mind starts running wild with all the worst case scenarios and that’s never healthy! 

   I know this post was a bit longer than the first but I felt like I needed to get ya up to speed on everything so far! I’ll update soon about tomorrow’s tests and in the spirit of TMI I’ll tell you about the last appointment and how a speculum caused a spectacle in the middle of the Dr.’s Office! (insert face palm!) Oh this life of mine…

Xoxo,

JJ 

 

761 thoughts on “Chromosomes and a Medical Mystery…

  1. Birth control is the devil! I was being tested (and treated) for a multitude of things. One day Doc Bristol said, “Get off the pill.” Three months later, symptom free. Best of all my sanity returned, well that’s debatable on the best of days. Prayers for you. It’s hard to see you young folks struggle like this. God is in your heart so 3/4 of the battle is all ready won.

  2. Talk to me about Clomid. I took it years ago. I even took up to 350 milograms a day. It did not work for me but God knew the answer.

  3. I hate that for y’all! I too suffer from autoimmune disorders. Systematic lupus erythematosus, multiple sclerosis & fibromyalgia. There’s many triggers some of which you described. Good days & bad days! Thankful for understanding family! Best of luck in your journey! Maybe I’ll see you around Scott’s Ferry, home sweet home.

  4. I have had 8 miscarriages and now have 3 beautiful children… I took fermara (like clomid without the side effects). It will happen, just be persistent and pray!

  5. Hi Jami, I randomly found your blog. My husband and I recently moved to Atlanta. I’m 39 years old and have never been able to get pregnant. When I was 20, I was put on birth control (orthocyclen) due to terrible menstrual cramps. It messed my body up. My ankles were swollen and I felt really crappy. My body just didn’t “feel right.” I was on it for a year and then went off of it. A year after I went off of the birth control, I was rushed to the ER with terrible abdominal cramps. It turned out to be a burst ovarian cyst. I needed a laparoscopy done to clean it up. Doctors said that the cysts happened due to the birth control. A few years after that, I had a series of abnormal pap smears. I was found to carry HPV (not the STD, but the strand that could lead to cervical cancer.)
    I was previously married and couldn’t get pregnant with my ex. After the divorce, my ex remarried and had a child. I also remarried but have been unable to get pregnant.
    Unfortunately, I know that birth control is to blame. Ironically, the treatment I naively thought I was getting for dysmenorrhea turned out to damage my reproductive system.
    I am praying for you and your husband to be blessed with a beautiful child. <3 You make quite a dashing, model couple.

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