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.

Lies I’ve Been Told…

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“Looks aren’t that important in life, it’s what’s inside a person that matters.” …

“I am your friend,”…

“That looks great on you!” …

“You’ll regret it!” …

“I’ll never tell anyone, I swear!” …

“You can count on me!”…

“This medication is non-addictive.”…

“I would never lie to you,”…

“I love you!” countless…

“If you lose weight you’ll feel better!” x infinity…

“Your doctor will call you back in three days…”.

“Your doctor will call you on Tuesday.”.

(Sigh)

Now, to be fair, it seems the clinic is moving floors. It essentially broke down earlier this year (at last check, admittedly a bit ago, only complaint with my doctor who ran clinic is about paperwork. Will keep you posted. Must have hubby do checking am too weak),  and it seems to have merged with another pain management service. My new doctor, who was only in this clinic once a week anyway, has not been in, due to the chaos. I have confirmed the scan is on my file. Now, I don’t even know if the doctor to administer the blood patch is still on staff. I caught a quick article up online for only a couple of hours that stated there are no doctors in my home city to treat chiari if it turns out to be. I will burn that bridge when I get to it, but I am pretty miserable here. I essentially lie in the dark most of the time. The straighter my neck the better. My vision is very bad. My tablet is turned way down, as is the tv. Very dark. I can’t stand noise. So it’s not always watchable or useable in the tablets case. Last week was great- I could sit horizontally and play with makeup for a little bit! Have a rest. Organize some items I had tossed aside when feeling terribler. So much better than lying on my side in the dark. I have incredible trouble sleeping, so I stare into black space for hours. It can be awful. And the facial pain. Ay-yi. And the back pain so bad you almost faint, but you don’t.  Because you’re home alone. On really good days I get to sit up for a while before the pain starts, the nausea and dizzy take over. On really really good days you can turn on a lamp.

The EDS Clinic said I could be in to the pain clinic there by the end of June, so hope oozes from every pore! No, I am grateful as I’ve been inappropriately medicated for a long time. I would like to sleep, maybe? Once a week? My former pain doctor had been planning to change my plans for medication for a while, as he suspected I might be causing myself pain with what I am on. (Apparently it’s a thing) Plus it has been a year since I have had proper migraine shots, so dealing with intermittent migraines, too. Fun! 😄

Oh, and a lady from Chiari Canada has been so lovely and supportive in corresponding with me, even though she is so busy. I appreciate it so much.

My rugrats gave me their flu or cold or whatever… I am not amused. I shall take my whiny butt back under the blanket.

I shall let you know.

 

 

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! 😘