I Need a Reboot

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I was feeling pretty okay today, considering it’s just less than a week before my Botox, and traditionally I’m feeling rough the week to ten days before that appointment. Usually I’m as I was at the beginning of the week, exhausted, unable to move much, napping a lot. Just generally miserable and in pain. It seems the mmj adjustment is helping. I felt a lot better today, and was able to distract myself with the makeup blog and some looks. I didn’t even exhaust myself. My neck was very sore, and my head hurt, but I didn’t think about it.

One thing that disturbs me is in took some photos for Instagram the other day, and I was very tired. When I looked at the photos, my eyes were the aligned. I looked at more photos and you can see the more tired I am, the worker my eyes are. These were bad, though. I will bring it up to my eye doctor when I see him in a couple of weeks.

After I relaxed for today, my husband took our son to therapy. I had dinner, daughter is downstairs at her homework, when all of a sudden I had a cramp in my lower right quadrant that took my breath away. And then another. It’s like some invisible toddler is stabbing me. I have no idea what is happening, but it’s painful. Since my pot doctor said to vape, I’m vaping. The intensity of the pain might actually send me to the hospital if I thought they would know what to do with me. It’s not my appendix. I don’t have a fever, chances are good it’s not something acute, most likely something ripping. An adhesion? But things can change, so husband is aware.

Of course, since my husband had the winter tires taken off the car yesterday, we are in the midst of a spring blizzard. He was going to pick up the car tonight, but he may just come home. I want to snuggle.

I’m just going to flake for the evening and watch garbage TV.

I want to finish vaping, take my medication and go to sleep. Thank goodness my body likes sleeping. I’m very lucky.

Have a lovely day Zebra pals! 😘

 

PS. My predictive text is super aggressive and I just can’t fight with it today. Sometimes, yes. I do mean i, not in. Or it. Or I do mean the word I actually say. 🖕 I have been using this emotional and lot this week. Again. Emoji.  Yes, I know, I can choose the word in the bar above. My Lenovo never did this…

 

US Beauty Queen Has EDS – Throws fellow sufferers under proverbial bus.

Story is here

“I know plenty of girls who are in a near similar situation as me medically who are bed-bound, but I believe lifestyle has a lot to do with your attitude and how you view your situation.”

First rule of Zebra club is you do not shame others in Zebra Club. You have no idea of my physical or medical experience, and to judge me as having the wrong “attitude” because I’m doing everything I can and fall asleep every three hours is egregious. I may have more than one diagnosis, and, pardon me, but I have at least twenty years on you. I’m tired. 

🖕

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! 😙

 

 

Mixed Emotions

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I have the feels again. These are mostly anger and shock. I’m finally vaping the higher dose THC pot this morning. I mixed it with just a bit of my regular stuff because it has certainly little cannabinoid in there and I wanted it to be something substantial, not a desperation experiment. Well, here I am, and my back doesn’t hurt finally. I don’t feel stupid. I feel tired, but relaxed. Cold. My pubic bone hurts. My hands hurt. I don’t feel like sitting around playing video games. I feel productive. Artistic. Comfortable, almost. Getting there. I’m hungry.

I know I’m angry. Angry that I was kept from pain relief because… why? I can’t be in as much pain as I say I am? I must be a drug seeker? I remember joking with a (male, ironically) friend about us potentially being roofied, and surprising some guy/gal by saying “ooh, I feel great, do you have another of those things you slipped in my drink?” 😄 I’m one of those EDSers that is tough to drug. I used to blame my weight, but I don’t think that’s entirely it. I seem to have a high drug tolerance.

My body has been feeling not hellish for five minutes, it’s been nice. I have been struggling through. I put together a post for the beauty blog yesterday. It took me all day, but it gave my day some structure. I took a couple of naps, rearranged some things on my computer, watched TV. It was nice and peaceful. I remember how my parents used to nag me about making friends and being friends and going outside, and I have brief moments of anxiety that I’m not talking to enough people. But then I remember what happened last time I spoke to people, and I hide under the covers.

So, to recap, emotions: anger at my old pot doctor for withholding working drugs from me, gratefulness to my new pot doctor for listening and caring, anger and hate toward my genes for this situation to begin with, happiness at the momentary relief, annoyance at my internal dialogue, bliss at the momentary silence.

I was so out of it with pain the other day my husband came over to help me fid something. He handed it to me and I actually said, “Good Boy!”. WE DO NOT HAVE DOGS!!!

My Botox treatment is on April 4th, so that is one week. I just need to hang on a while longer, and we start the circus again. I can feel the pain in my head returning, I’ve had a slow, dull headache for a couple of days now. My neck and jaw just ache.

I want to crawl out of my body. Just leave it behind like an exoskeleton.

Wishing you a great day Zebra buddies! 😘

The Sleep Monster!

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The sleep monster has had me for the past couple of days. I start nodding off around eleven am, I get up around six am, so five hours isn’t bad… I decide to lie down for an hour or two and I end up sleeping for six or seven hours. I wake up just in time to have a small snack and go back to sleep. It’s very disheartening, because there are so many things I would like to do. We always hope this is temporary, but you just never know how long it’s going to last.

When these sorts of things crop up, we have to make decisions. Decide what our priorities are. Our worlds get smaller. We have to decide what to keep and what to cut. It’s not easy. Friends tend to pull away. I’m to weak to worry right now.

I’ve lost another five lbs. I’m on the verge of 200 at 202. I’d love to break 200, but I’m worried. This week was due to nausea and sleeping through dinner. Five lbs a week is also too much. What can I do? I eat when I can.

I am scheduled for Botox injections on April 4. That should help. Until then… I did receive the stronger Cannabis, both in THC, but mostly CBD, but husband needs to grind it, because even though it’s milled, I like it finer. Picky, picky!

This has taken a lot out of me. I need to rest. Soon.

Happy Zebras! 😘

State of the Union

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This .gif is from Idiocracy if you don’t recognize it. I don’t know what I’m doing using American imagery, being Canadian, but this is one of my favourite movies. If you haven’t seen it, do and soon. Written and directed by Mike Judge, the guy who did Office Space and King of the Hill, it was released in 2006, he now says “I didn’t intend it to be a documentary”!

A lovely woman has been messaging me on Facebook messenger, and she has been sending me greetings such as ‘have a pain-free day!’ I appreciate the sentiment, but I finally had to ask her to please say something else, as having a pain-free day is so unlikely as to be impossible, and it is almost depressing! She was amiable and lovely, however, it made me think of all the things I take for granted that people know.

 

What is ‘wrong’ with me

At this point I have a few diagnosed illnesses.

Endometriosis

This was my first diagnosed illness. Endometriosis is where your uterine tissue grows outside your uterus. It can cause organs and tissues to bind together, and horrendous pain during periods. I was diagnosed at 19 by a gynecologist through a laparoscapy.  I have had five laparascopies to remove adhesions, tissue, etc. My bowel and bladder are most affected.

Migraines

Migraines started monthly, soon after my periods started. As the years continued they became more frequent. By the time I was 40, they were up to two or three a week. I started on Botox injections shortly after. They were lifesaving.

EDS, Ehlers-Danlos H3 Syndrome

I was diagnosed with EDS at age 44 by a geneticist. She was not impressed until I put my leg over my head while standing. Ehlers-Danlos Syndrome is caused by a fault in a person’s connective tissue and collagen is made improperly. This results in myriad problems unique to each person. My stomach and digestion, as well as knees and neck seem hardest hit. And my wrist from years of computer work is very unhappy.

Fibromyalgia

I’ve heard this word tossed around a lot. I’m not certain it applied to me. For the longest time I actually didn’t believe in it. I thought it was something doctors used to fob off on whiners to get them to shut up. Now that it’s been explained, I understand a bit more. They suspect it’s been brought on by the continuous pain I’ve been in, my body is essentially misfiring pain signals constantly.

IBS – Irritable bowel syndrome 

They are definitely not in good humour, that’s for darn sure.

Hernia

I have a microscopic hernia in my stomach that people muse about whether is causing a problem or not.

Swan neck deformity 

This is more just interesting. My fingers are bent at the tips, so they look like a swan neck. It’s fairly common in EDSers.

 

What is being investigated

Carpal tunnel

I’m having massive wrist problems, my GP said this is what it was, but didn’t really examine me.

Complex regional pain syndrome

Something to do with my abdomen being so bloody sensitive to touch. You touch it and I jump sky high. It’s terrible.

Gastroparesis

I likely fit the definition for this, just no one has said the words.

 

Who is involved in my care

Right now, the people involved in my health care are:

My husband

All around point man, food getter, diet manager, cheerleader, favourite person.

GP – General Practitioner

He is really good at referring me to people. I have been with him for over 20 years now. Nice guy, no clout.

The Pharmacist

My hero. This guy is great. He extended us credit when we were poor, keeps me from dying prematurely. You know, regular stuff.

Pain Management Doctor

I love this man. He is impossible to get an appointment with at a decent time, but he looked after my pain when it was critical. I will always appreciate that.

My Therapist

She has had me do more work than anyone, but she is amazing! Adore her. Tough, but fair. Lucky to have found her.

My Dentist

Really good dentist, up on the latest pain management techniques, too bad he is on the second floor. Luckily they book me for same-day visits. I can go when I feel good.

My Cannabis Doctor 

My new doctor is so good! She listens! She cares! I adore her! I am so lucky!

My Gastroenterologist

Ugh. This guy. I need to go back, but I don’t even want to. I don’t think he knows what to do with me, and I’m not sure it interests him.

My Nutritionist

Still have not been able to set up an appointment, so I might have to contact the hospital liason.

My Gynecologist

She is a hoot! She told me one of her friends is a dentist and asked how she could look at vaginas all day. She responded with ‘how can you look at teeth all day?’ 😄😄😄

My Respiratory Specialist

I love her! She monitors my CPAP machine and my sleeping. I need to go and see her again, as I lost 100 lbs, we may need to adjust things.

 

People I need on my team

Carpal Tunnel Doctor

I have a name, I’m seeing my doctor in ten days, he may refer me to someone internally. He referred me to a hand specialist, but she retired.

Knee Specialist

You know how puppets ‘walk’? I feel like I have to kick my legs out to the side to make my legs work. It’s weird. And my knees are all wonky, like they are sliding around. It’s uncomfortable.

Physiotherapist

I know a great physiotherapist, I’m just in too much pain to get up, dressed, there and back by myself.

Pelvic Physiotherapist

I did this for a bit, but same as above. Too much pain to get up, dressed, there and back by myself.

 

That’s where things are as of right now. Unfortunately,  it looks like I’m going to have to sleep again today. 😔 I’m so annoyed.

Hope you’re having a great day!

Have a stripey day, Zebra friends!