State of the Union

giphy4

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!

 

 

 

 

The Daily Grind

img_0201

I was looking for baby photos of my daughter to post on Facebook to embarrass her, when I came across this one.  My daughter took this of me taking a Selfie,  because she thought my hands were hilarious. They do look pretty EDS-y. Is that a thing? You can see my index finger clearly showing swan neck deformity. This was taken October of 2015.

I found the makeup palette I was looking for. It was in the drawer beside my bed. I don’t often wear my glasses at home, so I sometimes don’t see things in front of my face. I swear I looked there, though! With my glasses and everything! I also promised my husband I would call and confirm his appointment with a sleep specialist. Promptly forgot. Sigh. He remembered and did it, though.

My son didn’t make it to school all week due to anxiety. I feel for him. Grade 7 is horrible. Aspergers is horrible on the downslope. On the upside, it can be beautiful. I kind of want to blog about this journey, but three is too many. Beauty will have to go. Not ready yet.

I’m scheduled to see my friend tonight and she sent me an email saying she’s ready, but she understands if I can’t make it. Which means she loves me, but she loves her bed, too. 😁 I completely get it! I asked if she would mind coming over and ordering in. She gets to see my family, always a treat. But it’s a quiet night. I hope it’s okay, because I don’t know if I can go out. I’m getting frightened of going out without my husband. Part because of ice, and part because of pain. My back is so sore, still. I can’t even really sit up very well. My abdomen, holy moly! I am having the worst cramps. Everything from under my breasts to my pelvis is just one knot of pain. I don’t even know how I’m typing right now. Distraction.

I wanted a bath last night, but my husband was working from home and just sent me to bed at 1:00. Once again, woke up at 6:30. But this time my stupid cable box wasn’t working. He wasn’t home yet, as he took our son to physio, but he worked on the TV thing when he got home. We need a technician now. It’s just my room, too. Boo.

Of course, because I slept so long yesterday I missed a dose of medications, and that can’t be good. I’m probably long past it now. I still want to curl up and sleep. I know if I take extra medication, it will knock me out anyway.

I’d better do something, or I’m going to eat all the cookies in the world…Likely check my social media then nap again.

Stay bendy, my zebras!

 

My EDS Hands

yoemrr0r7n8sq

As you can maybe guess, I am kind of in a strange mood today. Positive, but strange. Twisted. Amused. I slept yesterday afternoon for a good chunk. Three hours. Until my son came running home, pounding on the door because he lost his wallet and keys. Daughter refused to open the door, as she thinks he should get his keys out and open it himself (unaware he has lost said keys). Brilliant husband figured out son’s route home, called local convenience store, and voila! Found wallet and keys.

 

My wrists are feeling better today, but I will spend some more time in

Side view of brace for right hand, my thumb goes in that pink loop.

those cast-like braces. They help so much, but there is just not much to do with them on. I really need to be evaluated by a specialist. I may need one of those fancy thumb stabilizers.

I have finger splints,  as I have swan neck deformity of the fingers. I will post a photo of that one day. It’s not too gruesome to google. I find, though, the finger splints don’t relieve that much pain. It’s equal to resting. The brace or splint does do quite a bit more.

20170127_105215.jpg

Top view of right hand brace.

It’s going to be a low-key weekend. I will rest, wash my hair, maybe do some makeup try-on for my blog http://www.squidgesbeautyhaul.wordpress.com, but that’s it! Fun only. I won’t be posting, I will be resting my wrist. Maybe trying out voice to text.

I’m certainly feeling better than I was last week. Still in bed, at least I’m not crying, too! Baby steps! 👣