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.

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.

 

Family Time

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Yesterday was Mother’s day, and I woke up to my alarm going off at 9:00. I usually sleep until 10 on Sundays, but have been enjoying getting up slightly earlier lately. Plus, my makeup look didn’t work out on Saturday, I wanted to try to squeeze in two looks as well.

I texted the kids, and was greeted with my usual Sunday fare of chocolate chip pancakes and coffee. My son carried those, and my daughter held a huge bag from Pandora! First to come from the bag was a gorgeous fuschia matte lipstick from Urban Decay called Menace that my son picked out. Apparently, he sat in the store with my photo and the lipstick samples and tried to match them. He will be 13 next month. He’s quite diligent. He was deciding among Menace, Alpha and EZ. He told me, even though I’m an Alpha, the colour wasn’t quite right. And he doesn’t think I’m EZ. Menace didn’t fit, but the colour is gorgeous!

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The cigarette holder in the middle is actually the Finger Brush. 

My daughter, 15, gave me a lovely glass box engraved with ‘Always my Mother, forever my friend’. So sweet. My husband gave me a bangle from Pandora, and of course we have the Finger Brush from Saturday. It’s called a finger brush because it’s supposed to mimic the action of your finger, in brush form.

Yesterday worked out well. I pottered and put on makeup, ND had very little pain and pressure. I was able to do two looks, no problem. Well, small problem. I was so tired by the end. I had to fight through.

Today I was battered, but I’ve managed. I played makeup today, I worked on an 80s look today that was fun. I was so tired and sore by the end. I needed a bath, too. I was going to bail, but I snuck up on myself. I almost dozed off inthe tub.  I was washing fast, before I fell asleep.

I’m fighting now to stay awake. I might get an hour before dinner. My back is killing me.  Gonna do it!

Hope your Mother’s day was great, Zebras! 😘

 

Worn Out

It’s been a long week. I don’t feel like I’ve had much time to myself. My kids have been needy. Which is fine, I just haven’t had any recovery time. I don’t feel like many of my interactions with the world have been all that pleasant, either. Every second person who contacts me on Facebook messenger is trying to sell me something. And these are brand new friends, not people I’ve had interaction with!

My lovely husband ran out and picked up new cable boxes for us last night. All last week they wouldn’t turn on, I couldn’t get any television at all..unless it would randomly decide to turn on, which it did occasionally. But mostly it would be pixillated garbage. The cable company would reset, but last night they finally said, yeah we have to replace those things, so he took them in. It’s great, because now I actually have room to record stuff. This has 400x the space or something. But the downside is I can’t read the guide. It’s on my tablet, but… blah.

We did our taxes. We spent $34,000 on out of pocket medical expenses last year. We are damn lucky to have that money, that’s my pension/Ltd money income right there. That went to medical marijuana, therapy for me and the kids, orthodontic work, likely, and my injection fees for Botox. I was mistaken about the tax situation. It turns out we get 3% of it back in our taxes. Whee. I don’t know what I could have done without that treatment. I’d probably be dead. I’d be in so much pain. Those are my two main sources of pain relief, Botox and mmj. Not to mention getting into the pain clinic which costs. There’s a huge fee. I’d have done myself in.

My neck is hurting so bad and I have such nausea today I am in tears. I had to help my son today with homework, and I snapped when he stabbed me with his pencil once too often. I feel awful.

I just need a break. I need a night out. With friends. Not a tall order at all!

Hope you’re having a great day, Zebras! 😘

 

 

Happy Surprise!

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What kind of portal have I entered? I think I will stay here! Or, alternatively, deal only with female doctors. No, that’s unnecessarily sexist. However, the past couple of days have borne some evidence this may bear some thought. Let me start at the beginning and tell you what happened.

You may remember yesterday I had to beg off my doctor appointment because I was in too much pain. My husband had a piggybacking appointment and spoke with her “for” me, strictly off the record, and let her know how I was doing. She assured him that my visit wasn’t a priority and to come in when I was able. My doctors trust my pain management doctor, Allan Gordon, a great deal.

Today I was to see my cannabis doctor. My husband has taken days off to make these appointments. This is how he uses his vacation days. My previous cannabis doctor has just retired, he wanted to research addiction. I am assigned a new doctor. My old doctor is very focused on goals. He wants me to go outside and go for a walk. I don’t think he can wrap his head around the concept that my knees have zero meniscus. Doctors won’t operate on me because of the complications involved. He wanted to lower my dosage, but my disease kept progressing. I think he was a caring doctor, who maybe couldn’t see the reality of chronic pain without it really affecting him. I don’t think he would accept it as being fact. He was also obsessed with what I did all day, where I spent my time. If I was in bed, I had to be asleep. No other choice. It took a year to convince him otherwise. Finally, my husband got through to him.

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Look! I’m wearing people clothes! 😃

When the new doctor walked in, I was hopeful. First of all, she has many Ehlers-Danlos patients. Second, she is on board with the idea of using marijuana in all its forms, oils, pills, green, instead of my other medication. Which conflicts with what the old doc’s priorities were. In fact, he said once he ‘didn’t want to give me anything stronger so I could sit around and play video games all day’. 🙄 I expressed to this doctor that I was still having a lot of pain, and I wished there was something I could take that would help. She reviewed my strain, we talked, she asked me some questions, she asked me if I needed to be alert for work, nope. I do not, so I have some things to try. All without being treated like a drug seeking non-person. One who could lie in bed if it’s more comfortable if she wants to!

This conversation led down an interesting path. She asked about my diagnosis of EDS. I was diagnosed by a geneticist. Asked about endometriosis.  Confirmed and diagnosed in 1989. Do I have a fibromyalgia diagnosis? Well…sort of. I was told they thought I had fibromyalgia, but I really have Ehlers-Danlos Syndrome. Once a massage therapist told me I had fibromyalgia. Then my husband pipes up that Fibromyalgia is in my chart as my official diagnosis. The doctor mentioned I could have both. This is news to me. I will have to investigate this more. Maybe not Lupus, maybe fibromyalgia! Will definitely ask at my appointment in June.

We had to walk a bit to get a cab. This place is badly situated, as we approached the taxi lineup, the first taxi in line is a company we don’t use, and was a minivan I have trouble getting into. As we started walking closer to the second cab, the first cab in line started freaking out (we approached from the back, so we didn’t pass him) it’s freezing and icy, the other cab is closer, and I’m hobbling, very obviously. The cabbie is blasting his horn and yelling. As the cab we’re in drives past him, he’s flipping us off and yelling. So glad I’m not in that cab. Road rage? That’s a major reason we don’t use that company.

It was nice to get out. It’s always nice to be home. I don’t have an appointment for a few weeks now, I can relax.

I need to say before I close, I have had a fair share of uncaring and rude female doctors and nurses, too. Female staffers are the ones responsible for demanding to know what drug I was detoxing from, when she found out I was taking methadone. To telling me to lose weight and I’ll feel better (plenty of men have told me this, I don’t feel better). Telling me I MUST be diabetic because I’m SO FAT, I was 260 lbs at 5’8.5″ and had put on 20 lbs due to being sick and bedridden for 6 months waiting for surgery. The nurse who told me I better not have a c-section after I needed help getting up after having my side sliced open for an emergency appendectomy, which turned out to be my period starting. No grudges, just a long memory.

Hope you’re having a good day, Zebra amix! 😘

Glitches Galore

My WordPress has been glitchy has hell. I finally gave up last night and left it alone. I think it’s sorted out today, as yesterday’s SECOND post has reappeared.

My husband is working from home today so he can take our son to physio. Today would be a much better day for me to be on semi-strike, as he does most stuff today, as he is nearby. My back is really angry today, so I’m ready to lie down as much as possible. I know you’re supposed to keep moving for sore backs, but I’m not going to be still, just reclined.

Some upsetting news, my ex-husband just messaged me to let me know his younger brother died on Tuesday. He was a great guy. In his early 50s. My husband said he had contracted cancer from taking steroids, but is not the most reliable source. Husband and I are just debating sending flowers to the family. There’s a button on the newspaper website, so it’s easy. They were my family for over ten years, but my husband is like, nah… I mean, I know he sees my ex one way, but his family is quite another. $75 is not going to hurt us.

That put me behind quite a bit. Not to mention, I spent part of the morning playing with the quizzes on Meaww.com.

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This is not wrong. Not wrong at all.  This, however …

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I do not look 28. That’s very flattering. But no.

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You’re hysterical, I do not look 18 in any way. Not at all. This isn’t even cute anymore.

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I’m immature? Is that what you’re trying to say? I have to agree. It’s closer to 2-9 than 29, however.

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You’ve mixed up my soul and my body, there. Also, am 5 months pregnant in wedding photo.

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This is very true. I am very insecure. I don’t feel talented or like everyone’s favorite person. I’ve been back stabbed and left too many times for trust in too many. There are 5 people I trust, two of whom I made.

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Seven…drops maybe! Beer and I do not get along, and especially these days alcohol is a bad idea!

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Maybe this is why I’m so gassy? Preliminary results indicate the stoppage of the Beet Fibre crackers are a success!

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Fast as in quick? No. Fast as in not eating? Maybe. Although I’ve had pretty good stable stomach the past couple days and have been eating like a pig!

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It would be nice if my story had a photo of my son, but I was down and out and I’m fighting my way, I guess. Just like everybody else.

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That’s not a bad quote, I suppose!

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That’s not a sixth sense! That’s Ehlers-Danlos Syndrome!

I’m going to play with makeup for a while and distract myself, maybe have a nap. I’m still too tired for a bath, and I think my back is too spasmy.  I’m feeling really sad and I’m going to just be with that for a while and remember. Makeup is very artistic for me, like painting on a canvas, with form.

Hope you have a wonderful day, Zebras! 😘

Update: just about to post this and transition to makeup and husband came upstairs, looked at me, laughed and asked what my plans was. I told him, and he shook his head and said ‘nap’. He’s absolutely right, I can’t keep my eyes open! 😅 Nap it is!

 

Feeling Okay

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It’s strange to wake up a couple of days in a row and not feel like you had been locked in the trunk of a car overnight. My back is still sore and my breasts have been inexplicably tender for the past couple of weeks. The nausea is still present, but quite diminished, which is a treat! However, the pain is so much less. I feel normal?

I did add to my troubles yesterday when I had dinner. My husband feeds me a half a cheeseburger with bacon for dinner on Saturday. We have been discussing the size of patty for a year now. I told him he needs to make them thinner or remove the bun. He grudgingly removed the homemade bun, but it was back last night. Knowing he went to the effort, I tried it. Wham! As I opened my mouth, and then wider I could hear the creaking of my jaw and then felt the flash of pain. I felt the whole bottom part move over? Is that a thing? I don’t think my jaw opens smoothly, it opens partway, then moves to the side to open more. I could hear the grinding and clicking, and then a snag. But the pain! I will speak to my dentist when I get there. I had a pretty bad headache last night, but I’m just a bit sore today. Soft food.

I did get lots of stuff done yesterday! Played around with my makeup, got some shots for my Instagram, Beauty blog. My daughter harassed some people to ask why they aren’t following my blog, it was sweet. 💜 I must be dying 😂

Vaping is the activity of the moment, more makeup (lots of stuff dropped this week) and hopefully I don’t try to overdo it!

Wishing you some pain diminished moments, Zebras! 😙