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.
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 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.
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.
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
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.
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:
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.
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.
She has had me do more work than anyone, but she is amazing! Adore her. Tough, but fair. Lucky to have found her.
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!
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.
Still have not been able to set up an appointment, so I might have to contact the hospital liason.
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.
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.
I know a great physiotherapist, I’m just in too much pain to get up, dressed, there and back by myself.
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!