Resolutions

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One of the resolutions I made for this new year is to be more disciplined in my blogging. I have been very lacksidasical lately, and I don’t like that. Otherwise, my resolutions are month by month, as I did last year. I have most of them laid out, but need to get back to it. January is supposed to be for rest and relaxation, so maybe I’m doing just fine. February is when I crack the whip.

This week was rife with doctor appointments. Last Sunday I met with my cannabis doctor. This was a video call. It was amazing. I was able to talk without crying. He was so nice! He told me I shouldn’t skip any doses and not to short myself. I don’t like the feeling of being loopy, but I’m in so much pain right now, I can’t argue. I have come to some realization about why I’m so leery of being out of control or out of it on medication, but it’s family stuff, and I don’t feel comfortable sharing. However, I  should be able to work through it better now that I know I have a hang-up.

Monday, I had two appointments next door to each other, so I saw my gynecologist first, no big deal. Just a check in to see how I was. Then we had some time so my husband wheeled me around a bit, and we found a Manchu Wok! I haven’t had mall food in years, so I had some… so yummy! Even though I was steadily eating pain pills, by the time we got to the sleep specialist, I was in tears from pain. I got out my story, but she can’t really give me anything but what she has, and she says they are for ‘normal’ people. So I need another doctor. And because I’m crying, I need a psychiatrist. No, I’m in pain. Trust.

But, after that, I decide I’m getting my flu shot because we were there. So we go, but I didn’t count on having to wait under the speakers blasting horrendous music for 45 minutes. Why do they make it so loud? And if it’s so loud, why is it so bad? Then two ladies notice my distress, they were those weird ladies, too. The ones that are really big on top, but have really skinny legs and bums? And they always have feathered hair, and they wear big sweaters that never cover said tiny bums? Anyway, they noticed my distress, so they come over and start singing loudly and tap their feet right beside me and crack up. Lovely. I loathe people.

The next couple of days I just flaked. I did some organizing around here, because it really is one of my favorite things to do. Played with some makeup. Found my contact lenses. I don’t like being loopy, but I sure am in a better mood!

So, Friday. I call my Grandmother. Light of my life. She’s my world. Everything is good.

Then I decide to call an old friend I had been neglecting. Mistake. He starts going on this rant about how I need to find better doctors and I’m too young to be lying in bed all day. I just need to find the doctor who will cure me. I take too many pills. Blah blah. Then: All teenagers think their parents are stupid ergo mine think we are stupid. No amount of conversation would help. Because this wasn’t a conversation, it was a rant. So I started crying and said goodbye. That’s another thing, I’m not going to hide my emotions anymore. Why bother? If I end up just me and my family anyways, people need to know if I am hurt, offended or amused.

My grand total for last year was 4 visitors, including my sister and brother in law, and two social outings. If you count my two day conference as two, then it is three social outings. Not that I didn’t try much harder. I had three more engagements where I was … ditched? Anyway, no worries. Let us see what this year brings.

Happy 2018!

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The new year is starting off pretty well. The EDS Clinic called yesterday and notified me of a cancellation. My appointment has now moved from April 5, to February 22! Yay!

My sister was here to visit for a couple of days. She is 20180104_080853.jpgteaching English in Beijing with her husband. I haven’t seen them in two years. Of course, I was just getting over that flu/flare-up I was dealing with, so we just sat in my bed and chatted, but it was freezing here in Toronto, and most of North America, so going out wasn’t high on the list.

My sister brought me so much cool stuff! I will show you some over the next little while. I didn’t think of this until now, and loading photos after text is nigh impossible if you are slower than Usain Bolt. 😐

I am kind of glad the holidays are over. I love Christmas so very much. It is my favourite time of year. I love buying gifts and the family get togethers and being with everyone. I love the cold weather and being indoors and snuggly! This year was wonderful, however I ate all the bad foods and I am so uncomfortable. I am constipated and have horrible acid reflux. Oh, fodmap! I run back into your arms! My skin is all broken out – which rarely happens, so I know I need to get back to my regimen. To think, some toffee can cause such havoc!

I have an appointment at home with my cannabis doctor on the weekend. They are charging $75 per visit, which is only slightly more than taxi fare which is about $60 round trip. Driving is out of the question, as my husband would have to park blocks away, I don’t drive. I’m too wobbly to park and escort, and there is no place to leave me in the lobby… this works much better. I get so sick in the car as well. Then on Monday, I see my gynecologist and my sleep doctor. They are in buildings right next door to each other.  I’m going to be tired!

Both my sister and my husband helped me clear out the clothes that don’t fit anymore. I have a few more to go, because I have kept everything as I have changed sizes, but not anymore. I will buy new if I change again. I have kept a few oversize things, but I feel like I have stabilized. I haven’t weighed myself all month until yesterday and I have only gained five pounds, but within my range – it’s probably waste material, anyway. I don’ t fuss as long as I am in my range – within 10 lbs.

I was supposed to see my sleep doctor if I lost or gained 20 lbs. I use a CPAP machine, when I went on it I was on a huge dose of narcotics, and since I have lost 120 lbs and decreased my dose of that medication by a lot, so this doctor will be surprised. I wonder if I still need the CPAP?

Wishing you all the best in 2018!

Stunned.

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Things aren’t great here. I’m coping. But I’m just coping. That is all that is going on. My life has pared down a lot from even where it was before. I think that was necessary, for now. Let’s just be real about what’s up.

My back-of-head pain seems to be back as it was before. Now, I can only speculate I had a reprieve because of the BOTOX injections. I am nauseated and dizzy when I sit or stand for too long. I do see the neurologist in two and a half weeks.

I received my date for the EDS clinic. April 2, 2018. I could weep. I had somehow thought December. It doesn’t help that I am on the super-duper special accelerated list, either. I am on the cancellation list as well. They are booking for the regular plebian Ehlers-danlos patients in November, 2018. This is supposed to make me feel special. It does.

Currently searching high and low for a gynecologist. This won’t become a crisis for two weeks, yet.

My husband has been in touch with the pain clinic. They do not know what is going on, but are working on things. I can’t worry about that.

My daughter has had the flu now, recovered, and is perhaps catching it again since school started last week. My son’s autism is really not good.

I have been organizing and reorganizing everything I can get my hands on, because it soothes me.  I haven’t been able to talk to anyone lately. I just can’t stand any pity. I don’t particularly want any advice either. I mean, unless it’s really helpful.

What I would love is some support.

I posted on Facebook that the pain was so bad, I was really struggling. I took a nap. I receive some push notifications, and one person, I don’t even know who suggested I “seek help” and it sent me over. I haven’t been back. It hit me so hard just then. People don’t see me at all, do they? How many people think I’m depressed? Seek help. Yeah. I will get right on that.

I do, actually, feel quite peaceful. My husband needs to run interference for me for a while, because I can’t people, but it’s only another year of my life to waste.

Spotify, Netflix, these are my new best friends! Oh! I can listen to music again! So neat!

💜

Rough Night.

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I have been having horrible abdominal cramps the past couple of weeks. I was diagnosed with Endometriosis in 1989. It was originally thought to be the source of my pain. I have been fine since I had my kids, mostly due to the Mirena. I’m on number 3, and am on year 2 I believe, so nothing should be wrong. I haven’t had any spotting. In fact, it had been working miraculously in helping me with cramps.

Over the past week, I’ve had discharge as if I was ovulating, (that’s one thing about chronic illness, being really in tune with your body. I knew exactly when I was ovulating, which made pregnancy a snap). The cramps were slightly menstrual-like, but more sustained ovulation-like. Mittelsmertz, if you will. Yesterday I was so distracted I even forgot my medication all day!

I went to bed early, I was generally uncomfortable. My head is hurting at the back. Around midnight I woke up screaming with intense abdominal cramping. Did I have a cyst burst? It was just on the right side. The pain lasted almost 20 minutes with me just babble scream-moaning for that time. It eventually subsided, but I’m aching intensely this morning. It could be that I caught my ovary or twisted it a bit. Or a bit of adhesions ripping. It could be anything. Well, not anything. I don’t think it’s actually a hedgehog on a rampage. It just feels like it.

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This was under the gifs for Endometriosis.  I thought it completely appropriate.

I had a horrible time trying to sleep last night. I just couldn’t. I took extra meds, but it didn’t help. I read some junk on my tablet.

I have my makeup in stacked bins beside my bed. At 10:51 pm. The past two nights, a whole row has fallen over. 😮 spooky! I know my family has been in rough shape because we’ve all been in bed before 9:30 both nights.

I’m curled up in a ball, trying to amuse myself. I’m focusing on taking my meds, having some fun, and taking things a bit easy. I don’t know quite how this will play out. My gynecologist is part of the pain clinic, for the endo part anyway. I don’t have one for other stuff.

The BOTOX shots help a ton with any cramping or discomfort. I had forgotten how much pain this can cause.

My husband might just swaddle me and leave me at the emergency room. 🤣 Like he was giving up a newborn. What should the note say? Tag you’re It? She’s your problem now?  😈

My husband had no idea what to do, so he did nothing. I’m not exactly thrilled. We should probably have a discussion.

Another issue with my doctor being absent is he made a lovely compound for me, well, ordered, and I’m now gingerly using it. I don’t know if I can get it again. It has gabapentin and ketamine in it, it’s a lotion, and it’s unbelievable. It fixed my abdomen earlier. I don’t have another doctor for this.

It was upsetting when I mentioned my doctor situation on Facebook, people started speculating he was ‘up on charges’ that is such dangerous speculation. I took the post down. I wasn’t strong enough at the time. I’m still worried about his health.

Anyway, I need to rest. More soon.

Oh! I’m down to 188. This was the 20 lbs I was keeping for emergencies, remember? Heh. Oh well. Eating is hard. Nausea is pervasive. Heartburn is so often. Even though I’m on the max dose of medicine for it. I just rechecked the BMI charts, and I need to lose 15 more lbs and I’m normal weight. That blows my mind. I was certain I’d never lose this weight. I suppose I like being slim. I’m not so certain I like the attention from men. Wait. I like the respectful attention. I don’t like the disrespectful attention.

Ok, bit of rest now. 😊.

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!