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!

Things Aren’t Happy

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This gif reminds me there is no one missing from our family. Things aren’t quite so dire. There are always people who are more in need than we are. We should remember them, at this time, and at all times. Drop someone a note. It really will make their day.

However, on to my tale of woe! 🤣 The past few days I have been sleeping. Waking occaionally to vomit. Yesterday, I was well enough to watch tv with my daughter, and had to use the washroom. Oy! Pardon the grossness, but I pooped a Christmas tree! I was vomiting, thank goodness my husband was working from home, I had my daughter rescue him from a conference call – I honestly thought it was hospital time. Now, I used to have problems with constipation.  So bad that I would have to take an injection to reverse the opiods so I could go. I was going everyday this week! I didn’t eat, though, much. So strange. I feel horrible still. I am hoping things improve. It sounds like the flu, right? Nah, just more intense version of my everyday. I’m cold, hot and I can’t stop shaking.

As for Christmas gifts, we celebrate Christmas, I have been ordering things, but I don’t remember what I bought for who or what. I haven’t maxed out my card, so we seem to be okay, but the boxes that are arriving? There’s a lot! What have I done? What do I need to wrap? Oh God help me. Next week will be brutal.

I have managed to escape the in-laws Christmas dinner. My husband has finally gotten across I’m too ill. My MIL understands, apparently, because we share symptoms. No, it doesnt bother me she’s 85. 🙄 However, she used to scream at my husband for helping me in any way. It’s best if I sit it out. It’s an hour each way. I can’t do it. My mother asked me if I was coming for Christmas. Even after I explained. They live an hour and 20 away. I wish people got this, ya know. LISTEN!

I wish I could stop obsessing about where my friends have disappeared to. I realize it’s the holidays, and I don’t expect to hear from people now, but… yeah. It’s pretty lonely here. I wish I was much more of an introvert. I need to work on this. I bought some therapy journals, and I hope they provide some distraction.

I’m working on getting some doctors working on these issues. Well, my husband is. It is not going well. I was rejected by one doctor because I have not been diagnosed with Chrohn’s disease. So new GI, go through the waiting list. I’m burping almost constantly, even water is painful to drink, and I have a huge pain the size of my fist on the right side that hurts when food moves around that bend. I’ve had it checked out gynecologically six ways, so we are confident it’s a GI thing.

This weekend, I think we try to put up the tree. I hope the minions can get it done. My kids are stuggling pretty hard with school. But they deserve privacy.

My husband actually showed them my Christmas tree poop yesterday! Part biology lesson, part ‘yes Mommy really is sick, this is evidence’ not that they doubted, but he’s so matter of fact, he just carries on! 😆 They are 15 and 13, so it wasn’t torture and they could have told him to take a flying leap. I wondered about it, but seriously, what if they were home alone with me one day and I had a fecal accident. It hasn’t happened yet, but it might. They will be a lot more prepared, and just thankful it is a normal colour!

That’s probably enough rambling from me today. Make sure you reach out to someone you love today. December can be cold and lonely.

 

Rough Time

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We ended up, finally, with a couple of inches of snow this morning. My kids, or maybe one was my husband? Were kind enough to send me photos.

I’m in agony. I was whiny yesterday? Ha ha! I tried to stay moving so I wouldn’t stiffen up. Today, I am like Frankenstein’s monster. I have nearly no fine motor skills. I crash around like a huge boar.

Something strange happened this morning. I took my medicine, the marijuana oil, and a while later I felt better. I had been lying still, but I felt dramatically better, and just a bit loopy and nauseated. Did I accidentally take my medicine twice? I feel really good. Just sick. Oops! Then I was ill, which happens so often we keep kidney bowls nearby. I just coughed up some bile. I had to use the washroom. As soon as I went to stand- oh, yes! I had the correct dose. It is very strange for me to do things out of order. But if I had doubled my dose, I could not be in THAT much pain, I am fine. So I hobbled back into bed, and finished a couple of errands I needed to do.

On days that are not so intense, I can keep moving, even if I don’t walk around much. This means my back doesn’t hurt nearly as much. On days when the pain is head to toe, though, there is just no way to deal, except to get through it and recover and piece myself together on the other side.

I am so glad my family is understanding.

My lovely cousin was stuck in town at the airport this morning, when I was at the peak of my stoned-ness, (?) Or whatever was going on there: trying to relax and not cry. She messaged me, I know she could tell I wasn’t myself. I hope I didn’t scare her!

I’m sure it will alarm at least a couple of family members to see me. Over the last three years I’ve lost 120 lbs. Mostly due to gastroparesis, but I know this will be universally ‘positive’ however losing as much as 40 lbs in 3 weeks due to vomiting is not the right way. My body just rejected food. It was horrid. I’m straightening my lovely curly hair because I lie down so much the curls just get crushed and become difficult to manage. That wheelchair we will be investing in. I’m falling so often from my knees giving out, and don’t forget that damn exhaustion!

Ah, well.  Speaking of exhaustion, I am going to have a nap, as I haven’t been sleeping well. I just got a new onesie from Torrid, it has Hello Kitty on it! Just some sleep and when the weather breaks, I need to wrap some gifts. I do this every year. I shop, forget what I buy, my husband hides everything, and when it’s wrapping time, there is a mountain of things!  Ah, its usually small stuff. My daughter’s usually a good helper.

Okay! Gotta nap this out! My lower back, oh wow! Can they do transplants yet?

*Groan*

giphy2A huge snowstorm is predicted overnight. Currently, I am applying and stockpiling every pain remedy we own. Ive happily dosed myself with medication and am still in excruciating pain. My back, nay my entire spine is trying to exit the top of my head and run for freedom. My hands hurt. I can’t move. Everything hurts.

There’s been nothing much exciting this week. Ive been putting some finishing touches on Christmas, buying tons of stuff for myself because I have no self control. It’s all little things. I think I had the flu or something, slept for 18 hours a day for most of the week. I’m eeling stronger now.

This storm, wow!

I should nap…

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I don’t feel good. I don’t really feel sick, either. I’m cold and tired, uncomfortable, and out of sorts. I’m nauseated, and was sick to my stomach yesterday. My son was home sick on Tuesday, but he felt vaguely unwell. Up and around after a few hours.

So, could be the flu, or it could be a regular thing that happens where my digestive system gets wonky for a couple of days. Weird.

I’m going to isolate myself and probably nap until I feel better – likely sometime tomorrow. I will probably be less cranky. I am only cranky because I’m not going to sleep like a silly.

Anyway, I will go do that, catch you in a bit.

Sorry, I’m Late… Too Mellow…

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I know I said I would be back yesterday, but I have been dealing with a flare-up and have been sleeping up to 18 hours a day. If I am not sleeping,  I just lie there, curled in a ball. My husband tries to wake me, but he can’t when he gets home. Consequently, I haven’t had a bath in two weeks. A proper one, anyway. I’ve been washing in the sink. And using wipes. To think that is all some people can do! Today I will bathe properly!

I’ve finally smartened up and am taking the full course of meds available to me. I don’t care how loopy I get. I’ve asked my husband to force my medicine into me, not just try to wake me.  The distinction is important.

The reason I can’t bathe is I am not comfortable without my husband being here to get me out of the tub. I have fallen a couple of times, and the kids aren’t equipped to help if I am unstable at all. I keep thinking I will do it tonight, but then… oh well. My teens smell worse.

I have spent the last two weeks really regenerating. I did a lot of good things, some stupid. First thing I did was end my Beauty Blog.  That was a tough, but obvious decision. I just can’t keep up with the deadlines I put on for myself. I can’t even scroll through Instagram right now! So, once I ended that, at least the guilt and pressure was off. You can keep up with me on Instagram, which I do update regularly @squidgeaboo. If I am ever strong enough, I would love to do the Beauty Blog again, but I think things would look different. It would depend on my health at the time, of course.

Next, I deleted Facebook Messenger. I think that was a mistake, one I will rectify once I am done this post, but it made sense when combined with my original plan. I was going to originally delete Facebook entirely, but then I remembered how useful it is as a sign-on device. I then decided to delete all my friends. Remember, I was pretty close to total mental collapse, here! Or emotional. As I started deleting, there were some I just couldn’t. (Now, I had added a ton of people after the US elections last year. I was hoping to become more engaged, but it didn’t work well. I made some wonderful friends, so it wasn’t a loss. However, there were many people I didn’t engage with and didn’t recognize.) I know there are good people who got caught up in my zeal, and some in my clumsy fingers, and even a few in my original mandate! I had intended to go back and do a second wave later, but looking at my new feed, I could see all my old friends. I could chat with people I remembered. They were there all along.

Perhaps Facebook enagement is what I need. Perhaps that is what I can handle. I do hope people can forgive me. Although I don’t know if I should draw attention to my boneheadedness and apologize or just do better from here on in.

I’m still playing with makeup when I can. The exhaustion doesn’t help, but it’s important to stay flexible and keep my fingers working with dexterity. Crochet is out, so makeup is in. I asked my husband for a couple of craft supplies and he spent hundreds of dollars on duck tape, the fancy kind, and glue, papers, mats, exacto knives, etc. I’m in heaven! Don’t worry, I promise not to sell you any crappy crafts! 😂

The other project I am working on is organizing my house. Well, everything I can reach. The other three members of my family have executive function issues, meaning they aren’t great at the higher levels of care, such as throwing out empty bottles of shampoo, etc. Being organized means everything is in a pile. I have been out of commission for ages, so it’s time to organize and dispose of everything we don’t need. It is going to take ages, as I can only do a bit at a time. The rest of the time, I stare at whatever is on TV. I sat through an Extreme Couponing Marathon. Fascinating. My brain can’t comprehend anything complicated. Just staring at the pretty pictures!

Anyway, organizing! Started with the bathroom… now for my too-big clothes! But the socks go first! Anything uncomfortable…gone! How many pair do I need? 😂 Maximum 5. If I go out 7 days in a row, I can either wear fuzzy bed socks or my worn ones twice…

P.S. I should note that my husband has done an excellent job of things over the years: Our house is not exactly a craphole, except for the fact that our kids spread out everything they own in order to see it. He hasn’t gotten rid of some of the other stuff, though, like the shampoo I didn’t like, or the razors I don’t use anymore, or weed out the facecloths that are paper thin. He does think we need new bath towels! He’s taken all my clothes that don’t fit to the basement. I want them gone. That sort of thing. Big Purge. 😈