My GI Tract Will be Scoped

giphy

I will also be looking at downsizing my huge tracts of land. I just tried on a 2x shirt I ordered and could barely get it over the girls. This is untenable.

Back to my GI appointment. I was a bit nervous because it was through the EDS clinic, and I met that awful doctor the first time, but these doctors were probably the best I have ever met. They had a fellowship student do the intake. She listened so carefully and asked such good questions. She really led the appointment and I didn’t feel like I had to explain myself or guess what may have happened to me. By this, I mean my guesses about my birth trauma are just suppositions. That’s when the pain started and it makes sense, but it’s really a guess.

I was examined, found to be full of gas, you can play my gut like a drum. The doctor came in, she confirmed everything and we went through the listing of about 6 scopes I will be going through. Timeline will be about six months. We will check my motility, scope up and down with a camera, I have to swallow rings and be xrayed the next day. Lots of things to check my motility. I won’t be enjoying those scopes, but I will like to poop more than once every 10 days.

Going to the EDS clinic is great, because there is an administrator there who is made out of sunshine. She is just the coolest person, and she talks with me and husband before our appointment AND takes care of stuff. I always feel like a real person again. I always look forward to seeing her. There is another woman who works there who used to work at my old pain clinic. I couldn’t recognize her face, but when I listened to her voice for a while, I realized it was because I always sent my husband up with my cards to register. I recognize her voice, but I didn’t see her much! I hope I see her soon to tell her! She’s sweet!

My husband does research, that’s his ‘thing’. So he looked up the lead doctor at the clinic. Not only is he handsome, he has a pretty darn good reputation for research. He may not have the reputation my pain clinic doctor has, but he has headed some large and important studies. He has the potential to be just amazing and well-known. My husband told me he is only 43. I am not comfortable with doctors being so much younger than me! (Not really)

I have sent letters to the patient relations department of the hospitals. One, being that my first appointment didn’t go well. I do not qualify for hEDS under the new qualifications, however it’s because I scored 4/9 on Beighton. Now this was January, and I told the doctor I could push further, I was in pain, but if he wanted to see something specific, please tell me. He was silent. The Patient relations person is amazing, and they aren’t taking away my diagnosis, but I am nervous. We are discussing. I can repeat the test fine during summer months, so we shall see.

The other letter is to the other hospital regarding the pain clinic and how I am not being heard. I am still in incredible pain. I’m not sleeping in any kind of pattern. 3 hours here, 2 there. I’m exhausted.

My husband and I have been discussing my presentation around doctors. I don’t know if I am doing something wrong or not. Am I not deferential enough? Too aggressive? I am running on pure adrenaline usually.

I have a whole new butt-load of medication to try. I know being more active will help, too. Sigh. I have also gained back 40 of the 120 I lost. I will cop to 15 lbs of that. When I eat oatmeal for breakfast and a couple of oatmeal bars for lunch, no dinner, how am I gaining weight? Besides not pooping? Honestly.

I also realized, I sound just like my grandmother. She was gassy, burpy, constipated, had awful heartburn, as well. I don’t know if she actually coughs up her food like I do. Gross. It’s like a cud. My grandmother had so much work on the farm and looking after grandpa, I don’t know if she actually had proper treatment.

That’s me up til now.

Will keep you updated if something fun happens.

Love to all.

🦓

 

Things Aren’t Happy

giphy4

This gif reminds me there is no one missing from our family. Things aren’t quite so dire. There are always people who are more in need than we are. We should remember them, at this time, and at all times. Drop someone a note. It really will make their day.

However, on to my tale of woe! 🤣 The past few days I have been sleeping. Waking occaionally to vomit. Yesterday, I was well enough to watch tv with my daughter, and had to use the washroom. Oy! Pardon the grossness, but I pooped a Christmas tree! I was vomiting, thank goodness my husband was working from home, I had my daughter rescue him from a conference call – I honestly thought it was hospital time. Now, I used to have problems with constipation.  So bad that I would have to take an injection to reverse the opiods so I could go. I was going everyday this week! I didn’t eat, though, much. So strange. I feel horrible still. I am hoping things improve. It sounds like the flu, right? Nah, just more intense version of my everyday. I’m cold, hot and I can’t stop shaking.

As for Christmas gifts, we celebrate Christmas, I have been ordering things, but I don’t remember what I bought for who or what. I haven’t maxed out my card, so we seem to be okay, but the boxes that are arriving? There’s a lot! What have I done? What do I need to wrap? Oh God help me. Next week will be brutal.

I have managed to escape the in-laws Christmas dinner. My husband has finally gotten across I’m too ill. My MIL understands, apparently, because we share symptoms. No, it doesnt bother me she’s 85. 🙄 However, she used to scream at my husband for helping me in any way. It’s best if I sit it out. It’s an hour each way. I can’t do it. My mother asked me if I was coming for Christmas. Even after I explained. They live an hour and 20 away. I wish people got this, ya know. LISTEN!

I wish I could stop obsessing about where my friends have disappeared to. I realize it’s the holidays, and I don’t expect to hear from people now, but… yeah. It’s pretty lonely here. I wish I was much more of an introvert. I need to work on this. I bought some therapy journals, and I hope they provide some distraction.

I’m working on getting some doctors working on these issues. Well, my husband is. It is not going well. I was rejected by one doctor because I have not been diagnosed with Chrohn’s disease. So new GI, go through the waiting list. I’m burping almost constantly, even water is painful to drink, and I have a huge pain the size of my fist on the right side that hurts when food moves around that bend. I’ve had it checked out gynecologically six ways, so we are confident it’s a GI thing.

This weekend, I think we try to put up the tree. I hope the minions can get it done. My kids are stuggling pretty hard with school. But they deserve privacy.

My husband actually showed them my Christmas tree poop yesterday! Part biology lesson, part ‘yes Mommy really is sick, this is evidence’ not that they doubted, but he’s so matter of fact, he just carries on! 😆 They are 15 and 13, so it wasn’t torture and they could have told him to take a flying leap. I wondered about it, but seriously, what if they were home alone with me one day and I had a fecal accident. It hasn’t happened yet, but it might. They will be a lot more prepared, and just thankful it is a normal colour!

That’s probably enough rambling from me today. Make sure you reach out to someone you love today. December can be cold and lonely.

❤