Well guys my health has been iffy. I have been fighting this mysterious infection. The doctors think it’s from the complications from the colonoscopy and endoscopy that landed me in the hospital for several days. I was sent home with Cipro in pills for 2 weeks. Blood work was repeated and my white blood count was still elevated but this time around I was in pain and wasn’t eating and just overall in poor health. I was getting my fluids and the hematologist I see locally, was concerned and called my GI and they agreed I needed IV medications. My GI doctor is over 2 hours away; I hate being hospitalized over there because it’s a huge inconvenience to EVERYONE. My dad or my husband have to stop what they are doing, take time off from work and have my mom or brother watch our dogs. It’s just makes everything way more stressful then it needs to be. My GI typically calls the ER in my town with orders because they have NO idea what to do to me.  This time around my GI decided I needed IV med because she thinks I’m in a flare and absorbing the pills (because I am missing that part of intestines) so one week of IV meds should do the trick. Turns out that was not the case with me. My levels came back higher than before I started the IV meds, so we drove the 2 ½ hours to see what her next plan is. Turns out its still this waiting game. My next test is not until early August to see if a fistula is back and touching my bladder, Until then it is just keeping the fevers down and the pain at bay.

My local ER is a funny place. With the people I went to school with being my nurses or just knowing me by name because I go so much. The doctors know feel sorry for me and just give me what my GI prescribes and then some so I’m comfortable. There was this one doctor who just sat there with me while I cried not because of the pain but from not being able to sleep due to everything going on. He gave me anxiety meds and some sleep pills to take home to take whenever I got into those fits. He told me that on his nights off from working he gets the same way, where the anxiety just eats at you. Well, I didn’t get lucky I had TWO different ER stays in the same week because home healthcare couldn’t set up my medicine to me fast enough. The local division closed its pharmacy in town so everything needs to be shipped from two hours away.  The 2^nd day they saw me it was like they thought I was there again for more drugs?  I waited over an hour for a nurse to come into the room. What drug seeking person asks for IV Cipro and steroids? I was in pain and throwing up but I wasn’t there for pain meds like they assumed. I have orders from my doctor and a port. I might look normal but again they can’t see my insides. It is just so frustrating I deal with all my pain and issues and I am already uncomfortable and inconvenienced don’t look at me like I have drug issues. 99.9% I do not take pain medication. It makes me itch and go kinda cray cray. So then I need Benadryl and anxiety meds and I’m still so stressed that 1^st dose really did nothing. On top of that I also have built immunity to pain meds and need more to achieve that level to pain free that to me it’s not worth it. Doctor’s don’t like I have this issue so they wait till 25 min later they get a call from the nurse saying I have broken out in hives or some kind of rash. At the end of it all the relief is so minimal and I’m so drugged it takes me days to get back to normal. NOT WORTH IT TO ME.

Ok so in my small town I have seen three gynecologists about sever pain when my time comes. This pain makes me very ill and lands me in the hospital and for over a year now everyone has been saying it’s my Crohn’s. I have been very weary of this because it’s a different pain and it AWLAYS coincides with my auntie flow. My dad did some research and came across Endometriosis and I had just about all the signs. I went to see the gynecologist and he looked at my past medical history and said “yeah you probably have Endo but I would not operate on you to even see if you do have it. Let’s just put you on birth control to maintain it.”  It was kind of disturbing but I went along with it. I got on the Depo shot and went on my way. Since I go to Shands for my GI I called over to their gyno office and made an appointment with a specialist. He said the same thing!!!! I was shocked … why wouldn’t you want to help me get better? He changed my meds to pills (which I thought was bad idea because of my Crohn’s and possible flares and not absorbing issues) but I followed instructions and took them. Well after about gaining 35 pounds, I had a flare and the Tallahassee office put me with a new doc who put me back on the depo. A few months back on it pains still bad and I had a period. Another doc suggested we do the shots every 8 weeks instead of 12. I am not a big medicine person let alone one who makes me cry and gain so much weight!!! But what option do I have??? They office keeps telling the Depo is a short term fix but they don’t give me ANY long term ones.  I reached out to ANOTHER specialist who takes hard cases from all over the world. Let me tell you, this patient packet was worse than my grad school application!!! I had to gather so much medical papers and mail it all. Well after a few weeks I heard back, I got a call and this doctor has agreed I need the surgery. I almost dropped the phone because I was so shocked he even called me and yet I was hearing what I wanted, someone who wanted to give me answers…..he said he would want to do as soon as October ( grad school will push this back to Christmas break, more like December) and hung up. I am happy to finally get answers but I’m scared. My last surgery was so extensive that no one else wanted to go in not even my surgeon who when in the 1^st place because of risk of complication. I know I have a high risk of a colostomy bag but I am just relived to have answers and get of these birth control pills!

I have 150 days till approximate surgery date and in that time I need to lose 30 pounds.   My last surgery I swelled and was around 200 lbs. for some reason my body likes to hoard calories and shuts down so for my mental sanity I need to be back to my 130 range. I have 22 weeks and that about 1.5pounds a week! So do able. The last few months I haven’t lost any weight and was working out like a fiend and nothing but that’s what happens when you’re sick. I have rested taken a month of and I’m jumping back in! Zumba mixed with walk/runs and the STAIRMASTER!!

I’m going to try my hardest to do a 1/150 challenge to see my progress not just for y’all but for me. This will be a huge step in my life and I want it documented my highs and lows!

 

-XO,

 

• I know I  am already behind in my 150 day posting and I am getting on it!