My GI Tract Will be Scoped

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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.

🦓

 

Friends!

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Yay! I have friends! I’m even wearing people clothes!

This past week has been a nightmare. That flu bug wiped me right out, and I am still feeling weak. Yet I am recovering faster than I have from other viruses, so I will take this! My daughter is still battling, she had to stay home from school, her headache was too intense.

My son is out for his first overnight trip! He’s out with the school. He has been bouncing off the walls all weekend. This will be so great for instilling his confidence. He’s a great kid. I’m just having trouble seeing my babies grow up. I had some insomnia over the weekend. I was the same way when his sister went.

If there is any confusion between the My/Our pronouns with the kids, there are just two kids, sometimes I remember to share credit, and sometimes I don’t. 😁

My good friend called me this morning, and we had a great chat, until I had to go, I suddenly started to feel awful again. But I had a nap, and if my surrogate little sister wasn’t coming to visit, I would probably still be napping!

My surrogate little sister is a good friend of my actual sister, and used to live with my family when she was a teen. I’m 14 years older than my sister, so I was long gone, but she’s an important part of the family. I haven’t seen her in at least ten years. She’s going to be surprised when she gets let in by my 5’9″ daughter who was knee-high last visit. 😅

I had to cancel my doctor’s appointment tomorrow at 1:00. I’m so annoyed. My husband can’t take me there, because he has to ‘work’ what kind of stupid excuse…( totally kidding ) No, he has to work, and the boss is out or something, and I can’t get there on my own because I’m so sore and weak right now. I have this awful pain in my abdomen that hurts when I sit up straight for more than a couple of minutes. Sometimes it twinges right away. I can’t seem to determine if it’s gynecological or gastrointestinal. We chased the gynecological theory for years, but my gastroenterologist was so dismissive and, frankly, rude, I’m not excited to try again. I mean, on FODMAP my inflammation issue is down, but the two spots of searing pain in my gut and my right lower abdomen are still present. The nausea has not gone away.

My friend has come and gone. We had such fun, and such a good chat. She lives an hour away, and is so kind to come visit me! She’s seeing her actual sister today, but had an extra couple of hours. I think we killed that and then some! Such good fun! I showed her part of my makeup collection. Silly bunny came to visit all made up! Who does that? I’ve actually resorted to storing my makeup in tubs. It’s just easier.

I love visiting, but I don’t love how tired it makes me, or how exhausted I get so quickly. I’m too young for this! I demand a recount!

We’ve made plans for next month. Visiting Bite Lip Lab, North America’s biggest Sephora is in Toronto, and lots more chatting. I have to rest up! Two venues? That is a tall order. I am excited to try!

It’s really nice being dressed. I feel so accomplished.

I haven’t been vaping the past few days, just using the marijuana oil at night. I’ve been worried about the vaping affecting my eye swelling flu thing, and been too nauseated to try, anyway. I’m hoping the pain in my back is ramping up only because of this, and not for some other fun reason. It is the most likely, however, hoof beats and all…

Hope my zebra pals had a peaceful day! 😘

Weekend!

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Hey hey! It’s Saturday! I woke up with the back of my head banging so much I felt like it was going to fly off. I’ve got my coffee and my mmj, so we shall see about that.

I stayed curled up in a ball last night. My friend didn’t make it over. We had a pretty big snow storm. 10 cm of snow isn’t a lot, but when it falls all at once, it’s a problem on city streets. She’s going to drop by today, after her massage.

I didn’t make it to my virtual party last night. I decided to join Rodan + Fields as a consultant, but only to purchase my own stuff. They call those ‘face washers’ apparently.  😂 This party was for those that were joining. I couldn’t uncurl myself enough.

I’m feeling a bit better today, not fantastic, but maybe moving will help. Going downstairs and seeing people.

Darling husband was super sweet today. He shops at Walmart every Saturday at 7:00 am, and there has been a sale on big fluffy pillows the past three weeks. He brought home one for everybody on week one and two, and two for me today, so I am just swimming in pillows. Unfortunately, he dumps things on me, so I am covered in things and can’t dig out. I will need his help later to make sense of all this. I don’t have the spoons, and my bed (our bed) looks like a bed from hoarders.

I need to find cheap tools for my mmj device. I keep losing them, and have to source more. Tried pipecleaners, not strong enough. This mmj is what is keeping me from certain death of spirit right now. It’s very high CBD, mid THC, so I can still function.

I have had the weirdest encounters with men the past few days. Normally, men are pretty respectful. I’m old, disabled, used to be pretty fat, and I’m still considered obese, but I’m about 5 lbs. away from being merely overweight! I chose a fairly man repellant icon for my Facebook photo, deliberately, not that I need to worry, yet I still had one guy in messenger saying he wanted to kiss my neck, another guy on my actual page saying he wanted to marry me! He claims he still wanted to marry me after I told him I needed a manservant to look after me, this bitch with pain, my personality does not make up for it, I wear nothing but onesies, and watch nothing but animated shows. Had to block someone on Facebook because he continually would judge my statuses, tell me I should be caring more about this or that. Just disrespectful. This one in particular was a petition on having Ivanka Trump’s Line dropped from a Canadian clothing store, which he didn’t feel is fair, because “she didnt do anything”. Disagree with me, yes, but don’t talk to me like you are my father. Anyway, I didn’t want him coming back with arguments or whining, hence the block.

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What takes the cake is my Instagram interaction this week. I deliberately chose a photo for my daughter’s birthday this week that was not so flattering. I’m glad I did. One tag I used was Aspergers. This one guy contacted me. Normal. He started chatting about struggling with Aspergers. Fine. Then he asked me if my daughter finds farts funny. Blocked.

This must be my punishment for participating in that thread and saying I wasn’t getting that much harassment so I didn’t mind friending men on social media. What is wrong with them? Does this work on anyone? If so, whom?

My friends always tell me to take my photo off my profile, use something neutral. But just because someone is a jerk, I’m not going to change my whole life.

I really, really, really love my socially awkward husband.

My friend showed up much earlier than I expected. I thought she was having a massage at 12:30 so I budgeted an hour, and then travel time, so 2:00 at the earliest, but she was here at 1:30, and I didn’t have time to finish vaping, never mind getting dressed, or finishing my blog post. But she was great, came and hung out in my bedroom. She’s so swamped at work. It’s terrible. I wish I could see her more often! We had a good catch up. My sweet husband made chocolate chip cookies. Gluten-free of course. They are delicious.

I’m still sore, my abdomen hurts. I have cramps. It feels like a bad period, or maybe a cyst. I don’t know what’s going on, but it hurts. I shouldn’t be having problems as I’m on Mirena,  so maybe it’s gastrointestinal. That makes more sense. I mean, my GI system has been bothering me since I was a toddler. I used to eat only every second or third day.

I should go do something productive, like check the weather, see if there are any storms brewing, find out how my week is going to be. Three seasons per year are tolerable here, really.

Have a stripey day, my zebras! 😘