Check-in

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Hi there! I’m pretty sure I am still alive, but the days and nights are blurring together, and I don’t know where I am, (ha! I’m in my bed, duh!) Or what I am doing. (Either wrapping presents or sleeping. I may be doing both.)

The past 10? days have been strange. I have been incredibly ill. I am so exhausted I don’t know which way is up. I have been existing on what my husband (I presume) has been leaving for me. Brie and crackers, mostly. They are the only things that stay down.  I haven’t seen my husband much. I did force myself awake this morning to speak with him. (Plus, I creaked open one eye and he was running around in his cutest boxer briefs, yay eye candy!) I must be feeling slightly better!

I was to be seeing my cannabis doctor today, but I can’t. Short of a stretcher, I am not in any condition to be going anywhere. My prescription runs out mid-January, so I do have some time, but I need husband to be able to take me there. They have grown fond of him at work. Problematic. Now, the doctor has a remote program I may qualify for, if you’re sick enough, and if you remember last time I went I was forced to walk due to construction and sobbed through my appointment. They have also started a VIP program for $300 per year, which has something to do with remote appointments, but the info was vague, and my husband was the first to call, so… I am not thrilled about two tiered medicine. I am very thrilled we could afford $300 a year, if that is right. It goes with my husband being so beloved – and he wouldn’t have to take a full day off. He could work from home, and take just however long for the appointment. Such a relief for our family.  (Yes, I am aware this makes the doctors sound sketchy, I think they are on par, frankly. Are they money hungry? Hell, yes!)

I feel terrible I haven’t seen much of my kids, but I have been getting up every morning when my alarm goes off during the week at 6 am, and weekends at 9, but I was up around 8. I have seen my daughter during the week, and my son on the weekend, so not much has changed. They’re teens. Always stuff going on. I always want to spend more time.

In Aquatic news, one of our Elder Pleco died yesterday. We are quite upset. However, downstairsn, it seems we have our second litter of bushynose pleco! We didn’t intend to have them breed, but, here they are!

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I found this hilarious, I am tempted!

 

From my favourite advice column:

Not an Act

Prudie advises a letter writer who constantly gets questioned about her disability.

Mallory Ortberg, aka Dear Prudence, is online weekly to chat live with readers. An edited transcript of the chat is below. (Read Prudie’s Slate columns here. Send questions to Prudence at prudence@slate.com.)

Readers! Ask me your questions on the voicemail of the Dear Prudence podcast. Just leave a message at 401-371-DEAR (3327), and you may hear your question answered on a future episode of the show.

Q. Not faking it: I am currently disabled. I’ve worked my way up to being up and about for an hour to two each day. Whenever I go out, people say the oddest things to me. Today, when I parked my car, a man came up and said suspiciously, “You don’t look disabled.” I said I just had surgery and rushed away. This happens almost any time I use my handicapped tag. Friends will tell me that I don’t look sick, or that I look great, and then take it personally when I say that I can’t go out for long or go to events. One of my best friends today asked if I had just tried increasing my pain tolerance. I never know how to respond, and knowing that these interactions are coming makes me anxious about leaving my apartment. What can I say to strangers who confront me about my disability, and to friends who don’t get it?

A: This will hopefully serve as a reminder to all readers that not every disability is immediately visible, and that it’s not the job of the general public to monitor people with handicapped placards for signs that they “really” need them. You don’t owe strangers a damn thing, much less an explanation, and I’m so sorry that so many people have taken it upon themselves to demand one of you. Feel enormously free to ignore them.

Getting this sort of treatment from your friends seems so much more painful. I cannot imagine why your friend would say something as amazingly stupid as, “Have you tried just feeling less pain?” That’s worth revisiting, especially since you say this person is one of your best friends. This is not something you can simply decide to ignore, and your friend should apologize for suggesting you just “get over” something like chronic pain. I hope there are people in your life who understand that you are dealing with a new reality, and who are looking for ways to demonstrate their care and support, rather than demand when you’re going to “get better.”

 

 

I am thrilled I get to miss the in-laws Christmas again this year, as I always get treated with suspicion. The first 7? Years of my disability leave my SIL would ask if I was working yet? Although, I have thouroughly explained my illness to my parents, and my Mother has asked me 3 times if I am coming up for Christmas.

I do hope you are having a wonderful holiday season if you are celebrating!

We celebrate Christmas, and I am currently trying to wrap what I can day by day. My sister is coming to visit, she has been teaching English in China, and I haven’t seen her in a couple of years. She will be here after the holiday. I have no idea when, but hey – all will be revealed.

I’m desperately trying to rest up. Taking my vitamins. Staying warm, Husband knows he will get sick as soon as he stops.

Ok. I am exhausted. That was far longer than intended, but good to share.

Sending lots of love and light!

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!