Woke Up Like This

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This is me just after I woke up and took out my mouth guard and took off my CPAP machine and pulled off my sleep cap.  This is because my friends on Facebook were teasing me about looking pretty awesome even though it was hot and sticky and I felt awful. I thought this would be a good ‘Me at my worst’ photo.

There is actually a reason for my youthful facial appearance, and it has to do with EDS. Because of our faulty collagen, some of us do maintain quite a youthful appearance.  I’m not certain of the mechanics of it. But it’s a thing. Also, I’ve essentially been in a darkened room for 15 years, wear that damn sunscreen! And I look after my skin as a hobby.

There are some things I am not happy with, of course. I have a wattle under my chin. That may be from the 120 lb weight loss however. I’m exercising my face to try to lose that. I have a pronounced line around my neck that I dislike. My arms are a bit flabby, my boobs are really saggy, I would like a major reduction. My stomach is often bloated from gastroparesis, which I haven’t been officially diagnosed with, but I have. I would like my hair to stop thinning. And the really dry skin that cracks, if that would stop, that would be cool.

I acknowledge these things are nitpicky and minor, and I would only have necessary surgery to correct anything, such as breast reduction, as that may help my back pain or my constant rashes. If I need intestinal surgery, it likely won’t help my gastroparesis. I’m probably stuck with that.

 

We decided to buy my husband a Nintendo Switch for his birthday, only a month early so the kids could play this summer. It was supposed to be here Monday, but it showed on Friday instead. Everybody is rushing through their chores. 😂

 

I think I finally figured out what I was trying to say about jealousy so I can finally drop it. You can’t pick and choose what aspects of my life you want to be jealous of if you’re going to revile me. If you are going to call me a monster or a saint, it isn’t fair to analyze a microscopic part of my life. I’ve made mistakes, some big ones. But if you’re ignoring the big picture, you’re missing everything. And I think that’s what fascinates me about people. Why I dwell on things like this. It’s a puzzle to me.  Because I know if people took into account my whole life they would not be jealous.

(Jealous of ME? I’m nothing! This must be getting like bragging, but I’m sincerely not understanding, I’m so unimportant, I don’t know why anyone would bother, maybe they don’t, though and I have too much time on my hands. This is my conclusion. People often bring this up to me. 🤐)

 

Anyway. I’m spending my weekend relaxing. I have a birthday makeup thing to do for someone! I need to see my kids, my husband. Have a bath.

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Enjoy!

If you want me to do makeup in your favorite colour, or your favorite style, let me know! I’d be happy to try! 😘

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!

 

 

 

 

Do Cookies Have Brains?

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OK,  so the reason I’m asking is that I feel like I’m eating a lot of cookies, but I also feel like a zombie. So this only really makes sense if Cookies have brains.

I am feeling so tired right now, but I want to play with my makeup. I have a plan, and I’m not going to give up, even though I keep snapping  my neck awake every few minutes. This exhaustion is just rude. I tend to eat cookies when I’m this tired because I think the sugar will help me. It just makes me fat. What I really need is a nap. I really should just sleep because I’m just going to be frustrated. 😔 I’m so upset. I want to do things, but I’m so tired almost all of the time. I keep having to postpone things.  I will try and get up at 3:00 and see if I can do it then.

I’m also having problems with bedsores. It’s getting annoying. I’m going to have to start wearing a bra again. That’s upsetting, because it binds my stomach. It hurts. I have had terrible heartburn and nausea has worsened lately. I’m eating even less nutritious food and more cookies. Everything hurts my stomach.

Okay, I’m going to nap now. The weather is cold. It was -25C overnight. Rest time.

Be good to yourself fellow Zebra! 😘