Not-so-Brief Update

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I should be sleeping. People on TV aren’t really making sense anymore, and husband is snoring beside me. But I’m awake and my back hurts and my head feels as if a small Lego person is wielding a pickaxe and slamming it into the back of my head, right where it joins my neck. It’s wrapping around to my face, and I only feel good when I’m lightly biting on my mouth guard.

I spoke with my dietician today, and it looks like I’m down a bit more food. She is not qualified, of course, but she did confirm that it sort of sounds kind of like I’m tending towards gastroparesis, and I should see a gastroenterologist asap to get the tests.

  • Fatty foods are bothering me. Consistent with gastroparesis
  • Eat and drink alternately. I’m struggling, it’s cutting down on my food.
  • The pain I’m having is in my upper area, in my stomach, not bloating or flatulence.  Paired with nausea and vomiting, consistent with gastroparesis,

We spoke in depth, and until my stomach gets checked out, we are going to try garlic and onion just a miniscule bit. I am stopping anything fatty. I had some chips and oven baked hash browns make me sick.

I have tons of allergies, and damage to my throat due to acid damage, I’m very picky. So, it’s my fault really, I’m not eating such a varied diet.

I do have a Neurologist appointment for the beginning of October ❤ I just have to survive.

We put in the request for the gastroenterologist at the same time, so I am hoping it should appear shortly.  I’m such an optimist!

I went to bed at 2 pm yesterday and woke up at 7:30 This morning, for this appointment.  I woke up disoriented and started yelling. I didn’t expect to sleep so long. Husband took it personally. 😭 I felt awful. We need to work this out. He wants to go to our marriage counsellor,  but the person we were seeing I saw personally. Last I emailed her she answered really strangely. She took my words and quoted them, saying she was sorry I was feeling “awful”. This was right after my head pain, when it was really new and really bad. I was put off and not excited to deal with her again. I don’t know exactly why I was offended so much, but it almost feels like mocking. The mature person would ask about it. The mature person has more energy than I do, I think. I honestly think, she’s moved to a new office, under new rules and the rules may be stricter. But I’m really put off. If it is really important to him, I will suck it up, but it will be mentioned.

Speaking of which, husband paid me a strange yet flattering compliment via our son this weekend. Our son will be diagnosed with Autism when he returns to school in the fall, and he is currently seeing various therapists to assist with organization, motor control, etc. One therapist is leaving to move to a different facility and he had the choice to move with her or stay and work with another therapist. We expected him to make his dad do the talking, but he marched in (he’s 13, he usually goes into the session alone, but he’s not ready to travel alone. Not there, to school, yes. He’s about 11 in maturity, anyway) and essentially fired her. Did all the talking for the hour when he’s usually mute. My husband said that’s like me. I’m good at having the difficult conversations.

Like the time I had a pregnancy scare with my ex-husband? I found him at some stupid place he conned a friend into renting so they could play “office”. I pulled him outside saying “I need to talk to you!” Before I could say one word he said, “I know, you have AIDS.” I only wish I knew then that when people accuse you of something, they are always talking about themselves. I can’t believe how many more years I was in that stupid marriage, too. Definitely not pregnant. HIV-free too. Only 1 STD, and that wasn’t exactly consensual, KWIM. But it was the most easily cleared up thank goodness, no lasting effects. Phew! I wonder what risky behaviour he’d been up to? 🤔

I’m so tired I watched tv today. Just watched tv. Tired isn’t right. Uh. I don’t know the word.

If you’re bored, Naked on Netflix is hysterical. It stars Marlon Wayans Ass, I watched Leah Remini Scientology Series. My god her makeup is Divine! The Scott Petersen documentary about him killing his wife, where I’m supposed to think he’s innocent.  Pfft.

Ugh, I’m starting to have these brief, sharp pains in my upper right ribcage, under my boob when I take a really deep breath. I had it this morning, I thought I could find a good position, I don’t know. I should probably just zone out until I can see a doctor, have people keep checking on me and wipe me down every once in a while.

I am having such a tough time eating, too. I had to miss dinner because of the nausea. I had oatmeal, a half lunch plate of nachos (lactose-free cheese and corn based tortilla chips) the rest at 3:30, and water plus unsweetened iced tea. I’m nervous about this pattern and how long this will sustain me. Losing another 15 lbs would be so cool, but it’s gotta stop somewhere. It’s really not normal to have this metabolism at my age.

Ok. Midnight. I’m going to turn into a pumpkin.

But hey, I did two blog posts! If you are interested in beauty, check out my beauty blog, Squidge’s Beauty Haul this post is on The Ordinary skincare line.

 

Upsetting News

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Ugh. My husband called the pain clinic to harass them about my not getting callbacks. When he listened to the Clinics outgoing message, he learned that my doctor, the head of the clinic, is away indefinitely.

I’m frightened.

Firstly, he did not look at all well at our last appointment. He is quite overweight, and looked pale and well, grey.

Secondly, he is not a young man. Going by his graduation dates, he is in his late seventies to early eighties. He has been pushing himself hard, working at least five days a week at the clinic, and travelling all over the world lecturing on pain management. I do hope he is able to recover.

The clinic has assured us it is still running, but, selfishly, I have my shots in two? Weeks. Nobody is as talented as he is. I’m going to get some hesitating ass. Nightmare.

Currently I have referrals out to:

  • Neurologist
  • Gastroenterologist
  • The hand and knee specialists retired so I’m waiting for the EDS clinic.

My heart test came back, it was ‘grossly normal’. Now the EDS clinic has everything they need, and the Manager said we should hear from her within a month, if not to contact her to find out what is going on. I don’t expect an actual appointment, but a date gives me hope. ❤

My good friend is moving an hour and a half out of the city. I dont get to see him much anyway, but he was offred a great spot in a retirement home and he can’t pass it up. We talked for an hour last night and damn it cheered me up!

It’s just so hard to get together with people when you feel lousy, and your kids take over the house, it’s not that big to begin with, and you can’t even serve tea. You don’t want to treat your family as staff, but you want friends to yourself, but as adults, do they come over and hang out in your bedroom? What the hell, sure! 😂

I don’t like this change nonsense.

If you can pray for my doc, I’d appreciate it. I hope he just needs rest.

Misery Inventory 😭

giphy1Please laugh at my misery. 😁 I am having a pretty lousy day.

It actually started last night. I did my makeup for a friend’s birthday, (once again, just ask) and I was just tuckered. I fell asleep at 5? And asked husband to wake me at 8-ish. He claims he couldn’t wake me. This could be true, as once I was in hospital, and the doctor actually picked me up and shook me, I could feel her do that, I felt myself trying to wake up, but I couldn’t. So I sleep deeply. I have CPAP, don’t worry.

So I woke up this morning, just barely, and my head hurrrrrts. My neck is just aching. I can’t follow a thing. I’ve tried four documentaries and they make no sense. I have to write everything down or it’s gone. I did buy a bunch of journals over the weekend this was so much fun, though.

My stomach is killing me too, though. I have heartburn, unusual. I’m so careful, and have been not cheating. I guess the chips are out. Lightly salted, too spicy. 😐 I am so very nauseated and yet am hungry. Plus my stomach hurts. Just the actual physical area of my stomach hurts. I was wearing a bralettes and it hurt, so I had to take it off. Another day where I can’t wear clothes, they are too much pressure. Physical pressure. My nightgowns are too close around my throat, though I know they aren’t. Any seam hurts. My fuzzy blanket is all I can handle. We’ve had honest discussions with the kids why mommy doesn’t wear clothes sometimes, and why that is a problem in society and we have to give her privacy.

Anyway, my stomach is acting up, but I did have a BM today, which is fantastic! 😀 I used to have to have shots that would reverse the opioids I was on so I could go. It was not a fun time.

But in addition to this, I’m having endometriosis-related cramps, and I can’t figure out why. I don’t know if my body is adjusting to the weight loss, which seems to be stable for now, around 195. Everything hurts for now, and I can never remember what I’m supposed to do.

I finally got it straight with husband. I’m supposed to take marijuana oil and then vape, but I don’t have the strength to vape. I don’t know if I’m just being lazy? Oh, hell no. I am not a lazy person. I really can’t. I don’t think it will do what I need it to do for my neck, anyway. I would really love a bath, but I can’t muster myself to get in there.

The kids are well amused. Daughter is downstairs doing whatever it is she does, and boy is playing the new Nintendo Switch we bought for Husband’s birthday next month. We thought we should get it early and have some time to play it. It arrived Friday, so the boys rushed through their chores, and husband and I had a long discussion about whether he really did ask me to order Zelda or not. I swear he didn’t. I am clear as day on this, but is it just my memory? But I would have no memory of the incident altogether, right? And he forgets to give me the phone every morning so I have to go crawl for it and hurt myself.

So, husband is calling the hospital every couple of days with no response. This is what you get with top doctors. Arrogance.

I have a ton of shopping due to arrive today. At least that should distract. And once I get that bath!

Friday Evening, Before the Long Weekend

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My tee from the Ehlers Danlos Society Fundraiser is here! I think there is another one on now. Go to Booster.com. There is also a Zebra Strong campaign that looks interesting. I’m waiting for my shirt from that one.

There have been thunderstorms all week here, and the humidity has been awful. My bedroom is hot as hell.

My head pain has been bad this week. Still haven’t heard from this neurologist. I’m three weeks away from my Botox injections, so I will follow up with my pain guy. Unless I end up in the hospital, first. I’m having terrible abdominal pain. It feels cyst-like. I’m curled up in a ball again. Glad we have the new tv. Netflix is easier to watch. They also have True Stories of the ER, which I love. The acting is awful.

Eating is awful again. My digestive system is super slow. I have lunch, and now it’s 7:15 and I’m still not hungry. Another hour maybe. Really, my neck hurts so much, I can’t think about it at all. The nausea comes and goes. I’d rather go back to sleep. But that’s no life.

20170804_185439Please ignore the clutter, but that’s my makeup stash in the background. I bought this awesome gadget from Kikkerland. (Kikkerland.com) it’s a tablet holder, and I currently have my timer on it. It attaches with a clip, and has an adjustable arm. It’s only about $20. I bought this after video messaging with my cousin and finding it so difficult to hold my tablet. Now I can watch tv shows, Netflix, listen to podcasts, and it also takes fantastic photos.

Another neat gadget I found, also at Kikkerland, is a 20170804_185357phone holder. I was forever losing my phone, and this way I always know where it is, I can find it easily, read and reply easily, and it was only $15! I’m delighted. This also attaches with a clip and has an adjustable arm.  Don’t laugh at my BlackBerry. Husband is in IT security and insisted on BlackBerry. Also, mess. As you can see, I use the IKEA metal rolly cart for a bedside table, and it’s amazing!

This weekend I plan to do some serious rest and relaxation. My XL elbow brace arrived, I need to do some serious skincare, my skin is in need of masking, I need some extra rest, and I have extra correspondence I need to catch up on.

I’m trying to get organized in many aspects of my life, however I need some assistance. Getting this assistance is almost as tough as doing it on my own.  Sigh.

 

Onwards. ❤

 

 

Progress!

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Finally, some good news! After another hellish treatment with Botox, (actually it’s not the needles that hurt, it’s feeling around for the trigger points to inject, because even gentle pressure on areas of my body really hurts). And I need to tell you the story of my day, still, because it was funny, but I’m still worn out.

My doctor gave me a cream for my head pain and said I can actually use it anywhere. It’s a bizarre mixture of ketamine, gabapentin, and other stuff. So far it’s helping to a certain degree. It may take time, though. I tried it first on Wednesday, and was immediately sick. But then the pain subsided slowly.

I tried it on my stomach last night and this morning. This morning, I was immediately ill. I may need to ramp up even slower. I don’t know quite how, except one part at a time. You only use a half a pea size amount per small area. My entire abdomen takes 1.5 pea sized amounts.

So, I guess this stuff is pretty strong? Or I’m just sick by coincidence, which is possible, because I hurt to be touched and my husband was rubbing some of the sorest spots on my body. Gently, but, sore nonetheless.

Just a bit about my doctor appointment from Tuesday: after we did the treatment, we had a chance to talk, and my doctor is concerned about my head and neck pain. He is sending me to a neurologist, even though he is one himself, he doesn’t have time to deal with this, his hands are full. The neurologist will consider a nerve block, likely, but will investigate the source of the pain.

My husband asked him what we should do in future with pain like this, and he shrugged without shrugging. It very much depends on my health, the danger, circumstances, everything, really. Am I in pain? What do I need? What am I looking for? So I asked if I should have gone for my head. He told me he won’t know until they find out what’s wrong. There ya go.

Last bit of gossip is we discussed my gastroenterology problem. I am now down close to 120 lbs. There is no way at nearly 47 years old I should be bedridden and losing two lbs a week. It makes no sense, metabolically. At about 193 lbs now, I’m only 25 lbs overweight. That blows my mind. I’m glad I’m getting something out of this. Um. I hope it stops somewhere. Anyway, my doctor agreed, and said this should be another priority. I then looked at him and said, this isn’t making sense. This doesn’t sound like just EDS. Something else is going on here. He was silent. He went back to writing scripts. He then said, I think you’re right. I haven’t seen anything like this, it’s progressing too fast to be just EDS.

Sleeping is easier.

Have a stellar day, Zebras! 😘