Party Weekend!

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I had the biggest party last weekend with a huge jug of Peglyte! Yes, the stuff you take before surgery to clean your bowels out. The GI doctors felt I had been so constipated for so long, I should start fresh, so to speak, before I started a bunch of new medications.

More TMI to follow.

I’m annoyed by some of these medications because they are huge! I used to be able to swallow the handful just fine, but now I must divide them up. It should help my motility – the rate at which food passes through your body- which is happy making.

Just attending the appointment on Thursday, the motion and movement – I pooped seven times on Friday with no medicine. Obviously, my lack of movement in general is impairing my movements, but I definitely need more help. The chronic nausea, never being hungry, I haven’t been eating much, maybe 800 kcal per day, and I still have gained 40 lbs. Not much has come off since the purge, either. My body is so weird.

I started on Saturday, with instructions to take the Peglyte every 10 minutes until it was gone. I took 4 of them and was so ill, I was sure I would be sick. It worked, but I repeated things on Sunday, waiting 15 minutes between and things went so much smoother! I still felt horrible, but once things ‘passed’ I went to sleep. You go until you are pooping clear liquid, by the way. Not fun. I am still weak and tired. My intestines are finding their way back to normal.  If they are able to. My son says I look so much thinner! I am not to leave things go that long anymore. Three or four days without a BM and I need to take action.

I can’t believe how much abdominal pain I had. I do feel so much relief. I am not able to wear waistbands, and yesterday I had a tank top on, but the lower band was too tight on my lower abdomen. I needed to change it for a loose tee-shirt.

I am sleeping now. Too much. Isn’t it always either too much or not enough? I don’t know if my body is just getting back to where it needs to be, or if it’s the medication I am on, but I can nap all afternoon and be ready for bed when the husband gets home. I suspect it’s the muscle relaxers that are supposed to make me drowsy.  Unfortunately my back hurts as much as ever. Well, my cleanse took it down around 10% or so.

It’s going to be interesting to see how this GI situation plays out. I already feel like I will be able to do more once I shake this exhaustion. If I can sort out some of the other issues and figure them out, it would be so great to feel better! I have 6 tests ahead, I think, and they said about 6 months to get them all. One scopes my throat, one my butt, one I must swallow rings and be xrayed, one I must wear a nasogastric tube for 24 hours, one I must eat a radioactive egg sandwich. and I can’t remember the last one.  I’m trying to focus on the possibility of feeling better, not tentacles of all sizes being shoved into my body. 😋

Hit by more exhaustion.

Sending love.

🦓

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.

🦓

 

You Can’t Tell Me What To Do!

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I really don’t get the chance to interact with many people. It’s a huge effort for me. But your husband and kids! People exclaim. I see my kids when they drop off food, they are teens! Introverts at that. My husband arrives home from work around 7:30 and must take care of homework and lunches and clean up, so he rolls into bed around 9:00. I have an hour or so, if I managed to stay awake.

So, when I get to speak with a new person it’s pretty exciting! Unfortunately, though, some people (though their heart is in the right place, I’m sure, wanting to help) start in with the “You know what you need to do…” and it’s very rarely helpful. Now, of course I am not dismissing carefully considered suggestions, I’m not unilateral in this! What I’m talking about are the questions that could be better phrased as why questions. The ‘You need to find a new doctor’ ‘you need a housekeeper’ ‘the waiting list for neurologists is six years’  these types of unhelpful comments.

It would also be nice to be asked how I’m feeling, but we might all be pretending everything is fine.

I’m still lying here in the semi-darkness, grumbling most of the time. I feel like my life is flying by. I’ve been lying here for a year. I’m gaining weight back because I can’t move. I am having huge gastro problems. I’m so tired today, I can barely move. I’m not sleeping properly, pain is waking me up. My joints are so weak and painful I can barely do anything. I am so angry at being ignored. How much more of my life am I going to spend lying here?  I can do NOTHING right now. Even watching television is a struggle as the light and noise can only last so long.

I did buy a cervical pillow from Wal-Mart, it’s very nice. It’ helping my neck pain. I lie on it at first, after being propped up a bit and my neck hurts so much, but the next day it feels good. Less pain than usual.

I feel like if I could have a good stretch I’d be better. Momentarily, anyway…

 

After the awful van attack in Toronto,  one of the victims’ spiritual leader said she had so many loyal and beloved friends because she was a good person.  *Well* it’s really good to know where I stand. 🤔 Perhaps I should stick to Christianity over Buddhism, as it lauds suffering. 😄(Emotionally self-inflicted counts 😜).

Ugh, just occurred to me, my throat kind of hurts – I get really angsty and grouchy when getting sick. (Started to get that way around age 35. Awful.) At least it doesn’t take weeks to get over anymore.

Time for more rest.

Things Aren’t Happy

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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.