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.

*Groan*

giphy2A huge snowstorm is predicted overnight. Currently, I am applying and stockpiling every pain remedy we own. Ive happily dosed myself with medication and am still in excruciating pain. My back, nay my entire spine is trying to exit the top of my head and run for freedom. My hands hurt. I can’t move. Everything hurts.

There’s been nothing much exciting this week. Ive been putting some finishing touches on Christmas, buying tons of stuff for myself because I have no self control. It’s all little things. I think I had the flu or something, slept for 18 hours a day for most of the week. I’m eeling stronger now.

This storm, wow!

Gurgle

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I slept until 3:00 this afternoon.  I woke to my husband stumbling into the bedroom declaring he just had a nap! This may be the first nap he has ever taken as an adult.

On Friday I was waiting for Pat McGrath’s lipstick collection to drop at noon, and at 11:45, I started vomiting. I managed to buy some lipstick, but then took a nap. Saturday, I was just as gross, and I finally figured out I may have the flu. Considering my daughter has it, and likely my husband does, and my son has been feeling awful… I just may be a genius. There’s been a nasty flu going around here, and my daughter has been having trouble since before school started. She’s either had it twice, or had an extended remix.

My mom was so sweet, she sent me some money on Friday to buy a treat to cheer myself up. From both her and dad. So sweet.

It was tough, but I had to put my Beauty Blog on hiatus until October 5th. I just don’t have the spoons to keep up with it right now. I’m so sad, because it’s one of my favourite things. I’m hoping the neurologist has a theory and I’m feeling better. I would like some answers and a plan.

When I can’t even do the small things, it’s a problem.

I need joy. To be able to supply joy. And I’m not even talking about sex. I’m so many layers below sex, you can’t even imagine. I have about ten layers to go before I even can think about sex.

On this level is bathing, reading, amusing myself, sitting up, and taking my medications. Not just staring into space.

Sigh.

💜

Sucks to be Me

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Actually, I’m not a loser, but my body sure is.

My head and neck pain is back with a vengeance. The Botox injections I had for my migraines and body pain definitely did alleviate some of the pain I was feeling. My shots are now three weeks past due. I have not heard from the pain clinic, but my husband is in regular contact.

In addition, my back is spasming like it’s made for it. Topping things off, I’m having menstrual-type cramps like you wouldn’t believe. I’m essentially curled up in a ball most of the day.

Just like the week before my shots, I’m exhausted and sleep a lot. It’s quite defeating. I keep reminding myself the neurologist appointment is on October 2. Just over two weeks away. At least I will have a plan. I hope.

I’ve had to put my Beauty Blog on hiatus until October 5th.  It was such a tough decision to make, but I can’t provide quality at this time. I attempt to apply a face of cosmetics and I’m exhausted part way through. Ten minutes in. Add the photography, and content. I’m so exhausted. I’m so disappointed, as I really love that blog. I’m looking forward to my energy coming back.

My kids are struggling as well. I have another blog, because I have so much information for living with people with autism. Some anecdotes, some strategies, and some catastrophic challenges. Unfortunately, it’s been too much to get that started.

My daughter has either had the flu since the beginning of school, caught the flu twice, or is suffering anxiety. There has been a nasty flu going around, and I was at the ER, a great place for germs. My son has been refusing to attend classes, and been spending time in the office.

My husband, Angel that he is, has been holding everything together. He fell asleep last night with his tablet on his lap and dental floss in his mouth. Poor guy. He tries to stay up and entertain me, but 10:00 hit him hard. I managed to slip the floss out of his mouth and put his tablet away without waking him.

I’ve been sleeping most afternoons from 1 to 6 or 7 and then am up with my husband until midnight. He usually sleeps earlier. I wake up at 6 during the week and later on weekends. I’m sleeping a lot. It may be to escape the pain. I’m focusing on being right on time with my medication so I don’t have the pain build up. It really helps.

I’ve also been nesting. Any energy I have goes into organizing or reorganizing drawers in my bedroom, which is my comfortable space. I’ve bought dimmer light switches, mood lighting, decorative boxes to contain some of the clutter, a fuzzy zebra blanket, some cute file folders, and cute pencil boxes. I’m getting organized with style! Everything is within arms reach. I feel so cozy.

Even though my body is being a real jerk right now, life isn’t so bad. I’m quite happy and content, I just wish I had more energy to enjoy things more.

Hope you’re having a good day!

💜

Hellooo Nurse!

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Finally, after being in pain all week, one of my friends on here (I don’t know if she wants recognition or not) convinced me to convince husband it was time to get me checked out.

Now we haven’t done nothing, I know my husband put in an urgent call to my regular gynecologist on Monday morning.  We still haven’t heard back. My GP is on holiday the last few weeks of August, with no cover. We would have called telehealth, but they always tell you to go to the hospital.

WARNING: I WILL GET GRAPHIC ABOUT LADYBITS 

I don’t entirely blame my husband, although he sure blames himself. If I had said the pain was bad, we need to go, we would have gone. However, I have a cold as well, with that sore throat. All I want to do is sleep. So I really minimized the pain, as I hoped it would go away.

At first, because I had spotting, I didn’t worry. Then it got heavier, and heavier, with the pain, our theory was my Mirena IUD had started burrowing its way to freedom.

I arrived at the hospital. The one I go to for pain management,  and the ER was fairly quiet. Score! I sat down with one of the nurses,  Matthew, he was a sweetie, even though he couldn’t spell Ehlers Danlos. He thought ahead and put me somewhere where I didn’t have to get up and down. My husband asked right away if there was a place I could lie down and I was able to lie on a stretcher the waiting room. It made such a difference!

I was transferred to a room, like an ER bay, because you know the pelvic exam is coming…

The doctor came in and did a preliminary outward examination of me. When he got to my back, I screamed. I didn’t know that. Well, I guess that hurts.

Apparently, on my chart, it has huge notes all over saying DO NOT DO A PELVIC EXAM UNLESS ABSOLUTELY NECESSARY! This is because pelvic exams hurt me. Very badly. The doctor, realizing this and seeing the preliminary exam, orders 6 mg? Of morphine before we go any further. What a sane and sensible man!

Later, he comes back to do the pelvic exam, and can’t find anything too dramatic. Takes swabs.

Next is a pelvic ultrasound. I have done this a billion times. The technician is awesome. It hurts much less than it has in the past. In the past, I’m not on morphine.

We arrived around 10:30, it is now around 3:30, husband decides to grab some food because we have a lull. This is where everything happens.

The doctor comes in while husband is gone and informs me that the ultrasound shows my Mirena is in the right place, no problems there.

The doc comes back 3 minutes later to tell me there is no indication this is anything but an endometriosis flare up. However, because there was discharge and bleeding there is a small chance there is an infection. They have the culture, but it takes 48 hours to grow, they will call me and we will prescribe something then. Otherwise, many women still get their period with Mirena, (all of a sudden, after 13 years?) that’s what this may be, go home. Follow up with your doctor, you need more pain medicine.

So, fine, we were getting up to go and wending our way through the maze of stretchers and some bitch sitting on her boyfriends stretcher had seen us coming out of the room and stretched her foot out to kick me as I went past. Nice. Bitches in this city.

So, anyway, I’m frustrated. I feel like I’m back at the drawing board. I thought I had this sorted, and it’s reared its ugly head. I need to meet with my doctor, but she’s near impossible to get an appointment with.  So, I’m going to need to consider another doctor. That’s first up.

I don’t think I want a hysterectomy. All advice to date has indicated I’m in pseudo-menopause now. Having my organs removed won’t make a difference to the pain, but will for other things. Will have to discuss with the doctor I end up with.

In terms of diet, I am on FODMAP, and can’t really change that. It’s been suggested I go vegetarian, or fish-based, but I’m allergic to fish, I’m allergic to legumes, which screws up vegetarianism. But I am also allergic to soy. So I’m very picky about my food. I only eat about two dozen items, and most are well vetted for proper growing technique.

Once again, spending the long weekend resting up. I suppose we tackle this new adventure on Tuesday.

I’m going to rest. So tired.

💜

I’m Here… Sorry!

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It was pretty darn rude of me to just drop out of sight like that, but I’ve had a hell of a week.

My son has had phenomenal anxiety. He is enrolled in a day camp, and he can barely attend. He struggles so much. I had a long chat with his counsellor today, so I feel he is getting some good help. Being a teen is tough. I didn’t like it either.

EDIT: I spoke to his professional counsellor for therapy, not his camp counsellor, he actually did that himself.

We have permission for a wheelchair. A temporary one. My doctor is hoping we can still do something with my knees, and we hope I can walk part time.

My hands, wrists, and fingers have been awful. They hurt so much. I’m not sure what to do. Resting didn’t help. I keep being told to wait for the clinic but it could be 6 months away.

I want to sleep all the time. I’m so tired. I’m trying to be awake, but I start falling asleep like I am now.  So I have to go.

I’ll try again soon.  Taking vitamins.  Maybe it will pass.

😗

Sunshiny Day! 😄

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I have a feeling today is going to be interesting. I’ve noticed several people haven’t been posting, so I hope it means they are feeling better with the weather and are enjoying themselves. I know I have a way different experience in the summer months. My joints tend to be looser, making it harder to walk, but my pain tends to be less intense overall.

I was supposed to see my eye doctor today, but I’m in too much pain. I know I’m usually in less pain, but I saw my Cannabis doc this week, and well, actually I saw a different doctor, this being the third doctor, since my original doctor left the clinic at the end of last year. This new doctor actually gave me instruction, as opposed to the original doctor, who suggested I get all info from my friends. Since I had no friends that vaped, I was pretty much on my own. Of course he treated me like a drug seeker! This new doctor actually sat with me and suggested I break down my vaping times. Change is tough, though. My body is adjusting. I keep forgetting, so I get really sore.

My in-laws called and announced they were dropping over today. My husband won’t be home. My daughter and I aren’t sure where to hide. We are sure we’ll be embarrassing.

The good stuff:

  • I have clear skin, no acne today!
  • I bought these really cool stands from kikkerland, a phone stand and a tablet stand that hold my stuff perfectly. Now I always know where my phone is, and I can have my tablet on while I do other stuff. I will post photos, if interested. $15 and $20 USD.
  • I bought the Pat McGrath Lipstick collection launched this week. I’m lucky I can do this. 😊
  • My kids have been lazy as hell, but very loving lately. I have great kids.
  • I have some really great friends. They really understand me. That is a blessing.
  • I am slowly getting organized. It feels really good. I have to get my blog check-in in sync, but I will get better.

 

I may be hurting, but I’m feeling positive. There are many loose ends that need to be tidied. I need to find out what is happening with my doctor, the EDS clinic, etc. I need to follow up on the neurologist to find out what’s happening with this head pain. But I’m doing well otherwise. There’s lots of napping going on.

😊