vascular compressions: another day. another test.
Last week I crossed another test off the list... well sort of. I went in to do an upper GI series with barium. She got me all situated with my gown, explained the process, and then went to get the radiologist to get things started. I'm not sure how long she was gone, but it felt like quite awhile. When she returned she explained that the radiologist thought it'd be better to do a different test entirely. They then reached out to my PCP to ask, but the order was from Oklahoma not her. So she informed me she was going to run all that information by the radiologist and he'd decide. I thought there was no way they'd just change the test on me, but I was wrong and they did. I was a bit perplexed on what to say, so I just followed their guidance and went with it. The nice part was I could change back into my clothes and I got moved to a room with a recliner. They decided I should do a CT Enterography, which is basically a CT scan with contrast dye and you also drink barium to plump up your stomach and small intestine to help visualize everything better. So after I got situated I was given a bottle of grape flavored barium to drink. Honestly, at this point I was so thirsty from fasting that I didn't really care what I was drinking. In total you drink three bottles over the course of an hour. Once again the nurse, Lindsey, informed me that I looked cold and retrieved three warm blankets for me and then proceeded to completely bundle me. It was incredible. The CT portion should be incredibly uneventful, but as stated before, getting IVs in me is a laborious activity. She actually got the IV in right away, but for whatever reason kept getting resistance because the needle for the contrast is quite long. But, third time's the charm. The nurse was seriously so sweet and we had a good chat. Had her name badge not been covered up I would have surely remembered said name and given her a shout out! She lives in Owatonna and works part-time. Zach was the other person assisting, also very kind.
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| Mmmm Barium... |
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| Just me surrounded in blankets |
The report came back with a lot of words on it that I will need my doctor to transcribe for me. I'm still waiting to hear if the CT is acceptable or if I need to go back and do the GI series. I also got my referral for an IR to do my venogram here in Minnesota. I initially was going to do the venogram in Oklahoma when I went down to do my angiogram, but the way their schedules are set up I would have needed to be gone for over a week. That just wasn't going to work. So after about two and a half weeks he found someone in MN he'd like to do it. I have a consult with this doctor March 1 in Edina. He will also do a pelvic ultrasound at that appointment. Then ideally I can get my venogram scheduled the week or so after that.
I also got my return trip to Oklahoma scheduled. We will head down there end of March for my angiogram. Violet is going to tag along with us this time. She still thinks Ben and I are fun to be around. I personally will need to stay more bed bound after my procedure, but Ben will take her out to do some fun things.
I'm working on putting together a post about our Florida trip. Which will have more fun photos! Beyond that I am trying to stay positive and get through each day. I was a bit bummed that these last two tests are a bit far out yet. I'm trying to trust the timing of everything and just hope my body can keep it together for another 2+ months until I can get scheduled for my surgery. I'm still eating as much as I can tolerate. I feel gross most of the time. The pain and nausea are incredibly bothersome. I've found ways to manage and some foods that I can tolerate even if I don't want to eat. Basically butter with toast is at the top of my list. Canyon House Gluten-Free bread is my fave. My mom makes me lots of chicken soup. I eat a few other things here and there. If I'm having a good moment I might be more adventurous and have a dairy-free yogurt with chocolate chips ;) I still consume coffee with oatmilk because I can't let it go. Well and I'm always exhausted so it's also a survival tactic. I try to do protein shakes on occasion but I really just don't like them.
Here is the most important part of this post... The SLOTH RUN! I've started a Team for the Sloth Run to raise funds and awareness for MALS and SMAS. The proceeds go to those two foundations. My team is 'We BeDazzle!' I would love it if a few people would join my team. The beauty is that you can literally sit on your couch or you can get out and walk a half mile on your terms in support. I would love it if your attire dazzled a bit and you sent me a pic ;) A group of zebras is called a Dazzle. So that's where the name comes from. Zebras are the mascot of rare disease, EDS being one of those as well. I would also greatly appreciate donations for the MALS and SMAS foundations if you just want to support with funds! Thank you in advance!
https://givebutter.com/abdominal-compression-sloth-run/we-bedazzle/ashleesuker
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