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. ย 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! ย 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?

โค

Not Having Fun!

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Well this is a fine kettle of wax. Or ball of fish. My treatment appointment is actually on the 13th of June. I’m not pleased. My head is hurting again, as is my back. And it started about a week early, too. I kept saying I think it’s next week or the week after. I vaguely remembered it was after my boys birthday, which is on the 11th, and I was mildly upset I wouldn’t be feeling well on his birthday.

However, I see the same doctor on the 8th for a consultation. Perhaps it’s better I’m unmedicated by Botox. That way he can see what is really going on. ย I will need to discuss with husband my goals and wishes for the appointment, because he will need to summarize and translate, likely. I’m in bad shape. If I spend any time not on my side – ie in any other position, I get a headache and nausea and back spasms. The headache isn’t bad, but the jaw pain is. I’m a grinder of teeth. I do wear a mouth guard when I sleep, but it needs replacing. I just have not been well enough.

It feels like there is a point at the back of my head, and when I’m lying on it, it’s wearing down or bruised? It hurts, but it’s the only way other parts are comfortable. I will roll over and nap soon. My husband thinks I should sleep all day. I haven’t been sleeping at night. I’ve been having good naps from 4:00 to 8:00.

When my neck gets all stiff and sore, and my head hurts and my skull hurts, my cognition gets totally screwed. I honestly giphycan’t reason, it’s such a bizarre feeling. On top of that, I can barely remember the words for most things. Yet, I lie down for a while, it has to be on my side and things get much better. If it’s raining, though, things are almost intolerable. The pain is always bad. Turning my head too quickly is a nightmare. The symptoms get worse the longer I am not on my side, too. I can feel the pain ramping, so I will be going to have that nap now.

My son’s birthday is coming up and I need to prep for my doctor appointment, so if I don’t touch base or check in, I’m rationing my time as much as I can. Know I’m thinking of you, I will be in touch when I can.

I was going to type something and it’s gone from my head. I hate this feeling. It’s not me at all. My husband said ‘it happens to lots of people!’ Not to me!

Oh yeah! It’s funny, my pain always seems to ramp up towards Friday. My Mom said I used to do this as a child, too – I would wait until the weekend to get sick. Hmmm…

Be well Zebra pals! ๐Ÿ˜˜

Unnngh

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I’m so stressed. Yet it’s mostly self inflicted. I mean, I think the pressure is self inflicted. ย รŒ ended up sleeping a lot again today. I couldn’t stay awake, and my back and abdomen were just screaming in pain. I must have overdid it yesterday. It’s so irritating that I put on makeup for 20 minutes and it caused me to have to sleep for the day. I’m at a loss as to how to cope because there is just no help available until my doctor appointments unless I go to the hospital. Honestly, what can they do for me? I mean, besides berate me for wasting taxpayers money. Never mind the people going in for sore throats because their doctors office is closed.

My husband is working hours and hours, I haven’t seen him in days. I miss him. I also have to have an uncomfortable conversation with a person because they are doing things that are crossing boundaries and I’m not happy. I’m too exhausted to deal with this. I just want everybody to leave me alone, except the people I don’t want to leave me alone. ๐Ÿ˜ yeah, it’s just as bad in here.

I don’t want to sleep my life away.

Hope you’re having a great evening, Zebras! ๐Ÿ˜˜

 

Drowning in Exhaustion

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My migraine finally broke last night, but it’s been flirting around the edges of my brain, threatening to return with one wrong move.

Every day I start out happy and full of promise. With pain, of course, but I have plans for things to do, and stuff I want to accomplish! Soon, though, I’m worn out and wondering how much I can still push through. Trouble is, when I’m trying to take photos of the makeup I’ve accomplished, you can see the pain in my face if I push it too much. I suppose it’s a way of keeping me from too much.

I finally had a full bath today, instead of a sponge bath. It’s been tough to get in there, I’m so cold all the time. I feel better now. It took me ten minutes just to get warm. My lovely daughter babysat. I need help running the bath, and I like someone to stay on the second floor with me, so when I get out, in case I slip they can help. I’ve got such great kids. They don’t complain much.

My husband has been so exhausted lately. I miss him. I could barely speak when he came to bed last night. There are so many things I want to do with him (that too) but I’d like to start with a hug, or putting my head on his chest. I can’t get close enough to him yet. I’m too sore. He’s too stressed. The other day my daughter noticed a pair of my underwear that must have fallen when my husband went to put laundry away. It was kind of near the bed, not really obvious. She handed them to me, to which I cheekily replied, “oh, there those are! Wild night last night!” She’s 15, our bedroom doesn’t have a door and is right next to her bedroom. She gave me the ‘yeah, right’ face. ๐Ÿ˜‚

Okay, trying to catch up with everyone. I’m thinking of you!

Have a wonderful evening, Zebras! ๐Ÿ˜˜

 

 

The Fog Lifts

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I have no idea what this gif is about, but I thought it was adorable.

I woke up this morning to more energy. I had to be careful to not go overboard and try to do everything, but I did get an impressive amount done, including a look for tomorrow’s Instagram, a Facebook live, which I’ve never done before, that was fun, and some organization stuff I wanted to do. I chatted on Facebook for a bit, nice to talk to people. I’m feeling more comfortable, not as picked at, I must be feeling better.

I called my Mom, to tell her about a nail polish I’d found by Smith and Cult called Birdie Num Num. If you’ve seen the movie The Party starring Peter Sellers, you’ll get the reference. I laughed so hard! I love that movie! It’s a family favorite, a good memory, as my Dad was well-ish at the time. He could at least laugh. It was before depression really took his personality. ย I’ve so overspent this month Mom offered to buy it for me! So sweet! The brand doesn’t ship here, it’s tough to get, but I found it, so…yay!

I did some ambien shopping last night. I get dozy and shop and don’t remember in the morning. It does come back to me. My husband was complicit, I remember him helping. I bought a bunch of cheap eyelashes to test the quality. They should be fun to play with. I spent about $35. Then there was early in the day when I overspent at Beautylish. I was trying to buy the Jeffree Star Manny/ย MUA collaboration, but I wasn’t sure what the total would be, and I had to be over $100 for expedited shipping. However, my son had a crisis as I was trying to put everything into my cart, and I forgot to take extra things out, so I bought more than I planned. We will survive, I just can’t get away with this excuse every month. ๐Ÿ˜ƒ

Other than that, it’s been a good day. I took my migraines medicine finally. I think that was smart. I am having incredible neck pain, and I think it may have something to do with the bralettes I’ve been wearing this week. I had husband pick up a couple of sports bras, they are slightly big so they don’t irritate my stomach, but my neck aches. I’m very large busted. My breasts have been sore, so I want them controlled, but anything I wear hurts my neck. I’m at a loss. Ace bandage? ๐Ÿ˜ƒ I will bring this forward at the EDS clinic.

I’m glad I don’t feel quite as bone-weary as I did yesterday. That’s an absolutely frightening feeling.

Have a great evening, Zebra loves! ๐Ÿ˜˜

 

Stumbling Around in the Light

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Good God I’m tired. I woke up this morning feeling well. I had energy. I made plans! I finished my vaping and decided to call my Mom as I hadn’t called her in ages. Halfway through the call, I lost all my energy. It just disappeared. I was so disappointed. ย I had planned to do some fun makeup things, prep for Instagram and my Beauty Blog. It was not meant to be. I ended up trying to cry, but I was too tired to produce tears.

I had another three hour nap this afternoon. I put on some golf to listen to, and was out.

So I’m currently sitting amongst makeup detritus, waiting for my husband to come to bed so we can snuggle and I can go to sleep again.

I picked up a phone message yesterday and it seems my gastroenterologist from hell retired at the end of March. Everyone knew this but me, apparently, I guess I was trying too hard to stay upright I didn’t see the signs posted in the office, and husband didn’t mention it. I’m annoyed and relieved. It explains why he gave no fucks. Likely why he wasn’t interested in a long term patient. Let’s start over, shall we? Sounds like fun.

I have so much to do, so much to say, stuff to do, and zero energy. Ugh.

Is there such a thing as like medicinal energy drinks? Medicinal meth? In my day it was cocaine I guess. I was thinking, what speeds you up? Speed? ย Lol. I’m soo into drug culture, can you tell? I had a friend who used to show up with pot in high school. Perfect with the pain of my menstrual cramps, we now know I have endometriosis, but that’s all the unprescribed drugs I took. I can feel crappy all on my own.

One Facebook friend? had a status today that read 90% of illness is emotionally related. ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

I read one of those anecdote collection of medical stories, and it told of this one student who was sitting behind another student who pulled out a bottle of Tylenol and counted out 8 pills and went to swallow them before he stopped her and asked what she was doing. She said her pain was at an 8, so she was taking 8 tablets. That’s why doctors ask you to rate your pain out of 10, right? ๐Ÿ˜ฎ Scary.

Okay. I’m worn out. My hands are feeling good from all the rest, they’re just cold! ๐Ÿ™‚

Have a lovely evening, my Zebras! ๐Ÿ˜˜

 

So Hungry!

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I am so darned hungry and so darned nauseated at the same time! I really want a hot meal. I want French fries smothered in disgusting gravy and bacon and sour cream. Yesss.

I didn’t receive quite as much pain relief today, but enough that I was able to play makeup for a while. I had fun, and my back didn’t hurt much. My neck was killing me, though. It’s funny, pain is like an onion. You clear one ache up and there’s something lurking underneath. I think it’s our brain’s way of coping. I don’t think we can cope with it all at once, so our brain stacks the pain. I don’t know, it’s just a theory I have.

I didn’t have a nap today, surprisingly. I’m ready to drop now, but I pushed through today.

Today is pretty boring. I’m feeling pretty boring. I’m out of energy. I don’t have the spoons. I can barely move my fingers. My stomach is growling noisily.

I even started a book the other day. It’s good, I’m enjoying it. I miss reading.

Hope you’re having a good day!

Happy spring, Zebra friends! ๐Ÿ˜™