Doctor Appointment

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I am so infuriated I have no idea what to do next. Let me start from the top. I went to the pain clinic doctor yesterday. Before I see him, he has a gatekeeper who writes down notes and brings forward my concerns. They look at my chart, make a plan and discuss. Makes sense, right? Sure when it works.

I went in there with a few concerns. First, I have not been sleeping. I get an hour or two, then day 5 or 6 I get a full rest. This is three weeks. My pain is keeping me awake since I’m stepping down the opioid medication. She tried to tell me my pain was spiking because of withdrawal. Never happened to me before? Oh, well take melatonin. Really? Well, practice good sleep hygiene. Do you really think I’m new at this? Well, we will slow down the step down on your medication, you’re doing the rushing, not us! The doctor comes in later and first thing says I need off that medication now.

I explain about my muscle cramps, constant pain from it, how much it affects me and how it impacts my day. I reiterate my daughter’s birth story, and the probable damage. She forgot to mention the spasms to the doctor, but he has a medication that might help. Gatekeeper chimes in that it might make me drowsy so I’m actually tired when I go to bed. I refrain from strangling her. Then the doctor asks me if I have children and I nearly shit myself. Obviously she has told him nothing. I immediately launch into the saga of my week in labour, but he isn’t listening. This is vitally important, but lost.

I had mentioned about a breast reduction, but gatekeeper scoffed. Don’t wear a bra. She doesn’t get it at all. I manage to ask how I’m supposed to do physio if the band makes me vomit and the straps makes my fingers numb. This, brought forward. Least of my concerns right now. (I’m a G in Europe or an I/J in US with a 38 band. I have a small ribcage, but yeah. The band is extremely painful it presses on my stomach itself, the straps cause finger numbness immediately,  total loss of feeling in 2 hours, and I have constant sores developing underneath, it’s a freaking nightmare)

She does seem convinced I need a gastroenterologist. They are helping get one on board by harassing the one at the EDS clinic.  I’m still eating the small meals a day, and whatever I can manage in between. My stomach burns like fire. Ugh. We now carry ZipLoc bags everywhere. I expect people to mistake me for Beyonce anytime now.

I did get called a fucking bitch twice and a slut once. I mean, my husband was driving his car on the street like an asshole, not levitating for pedestrians, totes my fault. 🙄  I was also wearing sunglasses indoors, I’m so photosensitive. I deserve to be called a fucking bitch. 🙄  I must be one of those newfangled sluts who never have sex, and rarely leave the house. Mmmm, constant vomitus soooo sexy.

The more people I encounter, the more I want to be alone.

Present company excepted.

I’m starting to hallucinate from lack of sleep. What fun!

Oh, Gatekeeper heavily suggested I see a psychologist to talk about my problems. (This has been something I have been begging for) because people with way less problems than you see them, you know. I also want to see a psychiatrist who can please help me with sleep issues. Please? (Another rant culminating in me demanding to find me names for both.)

This was the woman I saw last visit. When she asked where I was from, and I answered “Winnipeg ” she said, “I’m sorry”. (People from Toronto think this is hysterical).

If people in this city are being treated the way I am, no wonder things are tense. I refuse to leave this house and it is because of other people.

To add to the love, our city being shot up the other night was right where my husband grew up. Beautiful area. For some reason my husband’s ex girlfriend had to post all about her feelings and tag my husband on Facebook. Sigh. Normally, but not after 20 years and when you’re living with my exhusband. Apparently saying the first part (the tagging) is making the shooting all about ME, and pointing that out, is slutshaming. I can’t stop laughing, because no. Reporters reporting doesn’t mean the news is all about them, and in the end, doesn’t it always begin and end with the triggered white Male? Losers (’cause it’s always a pile on 🙄) . Glad I know there ARE good ones out there or I would be so depressed.

Ok. I’d better stop or my eyes will roll right out of my head. I have a low tolerance today, I had better look after myself.

Trying to get back to love, but I’m so low on reserves.

🦓

Sickie!

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Although I think I’m done with the cat puking phase… 😂. It’s terrible when you have two kids in school, and a husband who is in different offices. He has to work in different spaces sometimes. Not to mention the amount of doctors offices and hospitals we hang out in. I feel like im not catching things as often as I was, and I’m getting over them more quickly, so there’s that.

So I’ve been curled up in warm blankets, shivering. My husband was even with me on Monday, but I wasn’t too bad then. Tuesday I slept, and Wednesday, I alternately slept and expelled kittens.

I was going to try and do some things today, but i asked my husband for some warm clothes, and he laughed at me and handed me the cold medicine. The nighttime stuff. I suppose he’s right. I’m so achy and cold I will probably need today just to warm up.

It’s not THAT bad a flu, though. Might as well coddle myself, since I have the opportunity! Warm blankets… my shoulders are really sore, though. Incredibly sore. They go along with the rest of the body aches, but I’ve never had anything target my shoulders before. Strange.

Oh, and our neighbors are having work done on their house this week and it echoes right into our bedroom. Good thing I can sleep through almost anything. Daughter brought me noise cancelling headphones and i slept through my alarm. 😃

Ok. Time for rest.  We’re all getting flu shots when healthy. I insist. I’m not doing this all winter. I’ll be down to my birthweight.

Hang Head, Feel Shame.

I have been so neglectful of keeping you updated, I really should be ashamed of myself. However, I have experienced a very disruptive two weeks, and I am merely catching up now.

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Firstly, today is my 47th birthday. (Cheers, applause) I take birthdays pretty darn seriously. I always have. Partly, because it gives me an excuse for self-care, which is not something I allow myself on a regular basis, although I am getting much better. I tend to celebrate myself for a week or a month. Depending. I have never celebrated my birthday with a party as an adult. I only had a couple of parties as a kid, then we had the family parties where we celebrated everyone’s birthday that month. In my 20s, we were too poor and I was always working, then babies and now I’m eating so funny, and I can never get anyone together. The banking industry has its year-end on October 31, so most of my friends were really busy these past two weeks to a month. Including my husband. I hope he starts coming to bed before I’m on my last leg now!

Enough of that whining, Sephora started their Rouge Sale this morning, so I saved up for ages! Bought tons of goodies! Yay! Toys!

It seems my Botox kicked in on Monday sometime. So I’m feeling much better. I need to be very careful and ensure I lie down, avoid stress, eat properly, relax, rest, but as long as I take care I have a lot of improvement. I’m excited for Christmas!

It seems our son may not have autism. He was evaluated with the school psychologist, and while he presents as autistic, he is very anxious and has some serious learning disabilities we are trying to negotiate. They involve information processing and executive function. Once these are rectified, he may do just fine, and the autistic appearance will hopefully fall away. If it doesn’t, then he is autistic and we have more to work on.

Still having trouble with daughter attending school regularly. Her anxiety is just overwhelming.

So that’s what has been occupying my day to day. Both kids have needed more time from me, so I’ve been there for them. I’m tired today. Mellow. This afternoon cries for a nap.

I did have some fun with Halloween costumes.

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Beware the Rainbow Kitty!

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Who’s the cutest zebra you’ve ever seen? 😛

Hope you had a great Halloween!!!

Here’s hoping things get back to ‘normal’ lol!

💜

 

Gastroparesis Awareness

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Lovely, I was just reading a post on Twitter from the EDS Association reminding us it was Gastroparesis Awareness month. I replied I was pretty sure I had this, was awaiting diagnosis. Someone snarkily replied it was dangerous to diagnose yourself from the internet, and did I have tests scheduled. I replied I was trying, I had other priorities, which got, if you’re so sick, you should have your priorities in order. My retort was about needing my energy to bug my pain doc about my neurologist at the moment, but under normal circumstances, definitely.

It’s such a shame there are so many scammers out there we have to be suspicious of everyone. That really sucks.

I got partway into my makeup and just ran out of steam. I couldn’t go on. I’m dead. I hate using that analogy, but my lips are pale and I’m drained. I feel awful.

Anyway, back to gastroparesis. I have almost all the symptoms. It involves very slow digestion. I will eat at lunch, still be full at dinner. If you overeat, sometimes you vomit the remainder up. I am not doing this much anymore. I have a very small appetite, am constantly, well mostly, nauseated. My stomach is often bloated. Constipation, cramps, constant heartburn. I can’t think of much else.

My current diet consists of:

  • My morning coffee
  • Oatmeal for breakfast (the bad kind)
  • Homemade nachos with corn tortilla chips, melted lactose free cheese and low fat sour cream
  • glucose-fructose free iced tea
  • gluten free pizza
  • Chicken Tacos
  • Chicka Chicka Boom popcorn
  • Rice Crackers
  • Homemade hamburgers
  • Homemade hash browns
  • Chocolate (This is not necessarily FODMAP friendly)
  • Chocolate chip pancakes with syrup

 

  • I have been munching on lightly salted chips the past couple of days, as it quells the nausea. It worked during my pregnancies, my first one I lost 30 lbs! I was still 30 lbs heavier than now! 😮

This is all the food I would eat in a normal week. Other things we have in the house I can have are:

  • Lactose free ice cream
  • sorbet
  • Rice pasta with garlic and onion free sauce (gag)
  • Husband has a mini storeroom of chocolate in the basement, apparently.  For me.

I love my chocolate and popcorn, but I don’t miss my food. Since I started feeling better for the most part while on FODMAP, I don’t miss eating tons of things. I’m not often craving foods the way I used to, though I sometimes do get hungry. It takes a long time, though.

I hope I can get a gastroenterologist soon. I’m trying to think, and there just aren’t any other foods I eat. 🤔 Nope.

 

New Hair!

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I forgot to show off my new Hair! It’s usually curly, but we put in a treatment to reduce the frizz and tangles. It’s better if the blowout stays for a couple of days.

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My family went out and bought me an aromatherapy diffuser. This one fits in your cup holder. Because I don’t go out, it’s small enough that I can manage it. I can pick it up to fill it. It’s pretty powerful! We have bigger ones, but this one is more manageable.

I’m still feeling worn out, but I’m looking toward the weekend for some rest. I can push until then. Gently. I’m not going to exhaust myself, though. Just makeup playing 😁.

Sunday’s Scoop

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Does anyone else do this when they are sitting or lying with their legs straight?  I’ve done this all my life, and wonder if other people do it, too. I don’t know if it’s EDS related, but it makes people laugh.

I’m starting to be mildly concerned about my head. The headaches are becoming persistent and my face constantly hurts. The pain in my head isn’t bad, though, just constant. My short term memory is getting worse, and I’m sleeping more and more. I’m so tired. I wonder if it’s the heat, although husband did some tinkering last night and it’s much better in here.

My husband is by no means lazy, he is so overwhelmed things aren’t being taken care of that need doing. I finally insisted we have a night where he comes to bed at 7:00 so I can talk to him. Otherwise I don’t get to see him. He comes to bed at 9. Closer to 9:30, and I’m not keen on bothering him when he’s fighting to stay awake until 10:30 so he can have spent time with me.

I do try to take the burden, but there’s only so much I can do. I’m trying to organize things on my side, and that’s helping, so there’s that.

I have a heart test this week. Is that the Eeg or EKG? I can never remember. It’s the last test before I am on the list for the EDS clinic. Six month wait. I hope they can speed it up.

Ok, I need to move.

Be well!

I’m Here… Sorry!

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It was pretty darn rude of me to just drop out of sight like that, but I’ve had a hell of a week.

My son has had phenomenal anxiety. He is enrolled in a day camp, and he can barely attend. He struggles so much. I had a long chat with his counsellor today, so I feel he is getting some good help. Being a teen is tough. I didn’t like it either.

EDIT: I spoke to his professional counsellor for therapy, not his camp counsellor, he actually did that himself.

We have permission for a wheelchair. A temporary one. My doctor is hoping we can still do something with my knees, and we hope I can walk part time.

My hands, wrists, and fingers have been awful. They hurt so much. I’m not sure what to do. Resting didn’t help. I keep being told to wait for the clinic but it could be 6 months away.

I want to sleep all the time. I’m so tired. I’m trying to be awake, but I start falling asleep like I am now.  So I have to go.

I’ll try again soon.  Taking vitamins.  Maybe it will pass.

😗