Untitled.

I received an email this morning telling me that the reason my old pain management doctor was on leave was because he sexually assaulted three people and the College is calling for more stories. The clinic is being shut down. They didn’t hide their glee. They couldn’ t wait to lay their story on the College!

Look, I’ve heard the rumours. I’m horrified.  I’m disgusted. I don’ t know if there are any people out there who aren’t monsters. Yes, people. Women have been just as disgusting to me as men. Which is why I’m sitting here alone.

I really don’t understand why you have to clobber me repeatedly with the facts. I said I wasn’t sure what was happening, because I heard your version, everybody has heard your version, but the facts are playing out differently.

I am having appointment after appointment booked with… the new Head of the Wasser Pain Clinic? Dr. Peng! We go way back! He’s amazing! Very different from Dr. Gordon! Will this be permanent? Nobody knows yet.

What you don’t seem to understand, is that Dr. Gordon was always cordial to me. Was that because my husband was there? I don’t know. But he was the first person to listen to me. So I can’t throw him under the bus for a game of telephone. The first person to say he assaulted me, absolutely. I don’ t think he’s not capable of it. I just don’t lose my mind over non-verified conjecture. We are talking about a fifteen year relationship, here.

Anyway, moving forward, if anyone could show anyone else some compassion for losing their long term doctor, not being able to access care, that would be great. I sat here for three months not being able to sit up for more than fifteen minutes most days because my pain was so bad, and I couldn’t arrange to see anyone as he went on leave right before my appointment. If I sat up too long, I’d start puking.

I think if Dr. Peng is truly taking over, things will look completely different at Wasser, it will be like a breath of fresh air. The man is a genius! He is very strict, though. Doesn’ t like fatties. He treated me so differently this time around when I was skinny. 🙄 my only complaint.

I’m going to go process this some more. (Cry) I really only have to muddle through until April, when my appointment with the EDS clinic happens. I’m expecting big miracles from them!

 

 

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!

💜

I’m a 10 out of 10

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You know you’re gearing up for a migraine when you lecture a stranger in your dream for wearing too much perfume. I even gave her the speech on the proper distance you should be from someone before you first detect it. I was quite thorough. The proper distance, by the way, is conversational distance. That is where you should first detect someone else’s fragrance.  None of this where they walk into the establishment and you can taste it before you even see the person nonsense.

Anyway, I tried to play with makeup yesterday, but the migraine started creeping up. I continued, because it had been over a week! I played for a bit, then finally had a nap. Slept from 1 pm until 8:30 pm when my husband came to bed. I was so restless and uncomfortable.  I couldn’t settle my stomach. I didn’t have anything solid yesterday except for oatmeal for breakfast.

I couldn’t sleep last night, I was just awake, restless. I keep trying. I’d dissolve into tears every once in a while, the pain was so bad, and then it would dissipate. Then ramp up. Ugh. I would lie there, just trying to be still, trying to distract myself. Reading cat memes. Reading long form news stories.

I was supposed to have Botox injections for migraine and for pain management on August 22-ish.  Since then the migraines are back, I’ve had my first period in fourteen years, (Mirena) and I’m wracked with pain.

I have not heard back from the pain clinic. Realistically, it’s been 3 weeks? I think? It feels like an eternity. I feel like most of the pain right now is in the back of my head, whatever we are dealing with there. One month until my neurologist appointment.

It’s also been close enough to a month that I believe it is time to start harassing the EDS clinic again. I think we shall do those things, see where that leads us.

I’m interested to see if I have a period next month. The question: was the Botox contributing to my lack of menses? How? Dunno. Correlation does not equal causation yeah yeah. We will see.

Let’s tackle one thing at a time. I will certainly bring it up at the EDS clinic, I don’t know if they have a GYN on staff, but I will ask for a referral straight away, as well as for a gastroenterologist, as that doesn’t seem to be happening either.

Happily, however, my stomach seems to have settled and I no longer feel like throwing up my toenails. Yay Gravol!

Short term, I don’t seem to be sleepy. Or I am already dead. I occasionally find a comfy spot and all is happy for a while, so things aren’t terrible. I’m going to focus on medicating myself today, listening to podcasts, and maybe tv if I can. Tonight I’m definitely taking a sleeping pill, and back to that if I need to.

I was thinking of a warm bath, but moving…

I can do a month! Right?

And however long the EDS clinic takes…

💜

 

 

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. 😊.

I’m a Badass!

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I survived my Botox injections yesterday. My regular doctor did them and started with the migraine portion and went down my neck and down my spine and back, to my bottom, and back up thru the other side. I then flip over and we start on the front. When he reaches my abdomen is usually when my screaming starts. It hurts so much.  After, I calm down fairly easily.

My husband is always looking after me. He’s so caring.

After, we spoke with the doctor.  Cleared some things up. We made another follow-up appointment. For October.  Right before our 16th wedding anniversary.

We headed to the car, well, the lobby, hubby picked me up. The dentist was ready for me, so we headed straight there. Skipped lunch. Had my crown repaired. X-rays, no cavities! In fact, no extra work to be done. Mold for mouth guards (2) because if I drop one, and it’s inaccessible, I can’t go to sleep until someone is home to rescue me. And with my hands becoming fumblier and fumblier, it just makes sense.

I had to crawl up the stairs to bed, but I made it.

I need to return on the 30th June to fit the mouth guards and finish the cleaning he started. What a treat!

That’s the short version. I will get you the long version soon, as it’s pretty funny, but I’m really tired and the back of my head and neck are killing me!

Be well, my Zebras! 😘

Needle Day

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The past couple of days I’ve been in just incredible pain. It feels as if someone has been standing on my shoulder trying to chop my head off. It has been incredibly painful. Fortunately,  I had my Botox treatments yesterday, and they help immensely. I’m waiting for the juice to kick in, but they mix it with lidocaine, which helps.

He got my jaw and pubic bone good this time, I screamed at the pubic bone shot. He felt for the trigger point, I’ve known this doc for years, or it may have been my husband, they work together now. It’s sweet. I love the way my husband gives the doctor advice and he actually takes it. Aspergers isn’t all bad, also, being white, 6’5″ highly intelligent, male, and used to people listening to you helps. I’m usually in too much pain to do much more than grunt or squeak.  Husband translates. 😂

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The end of the session. My doctor ran out of there. I don’t think he likes my screaming. It is kind of intense. Not fun for me, either. You know how they say beauty is pain? So is walking.

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Since I only go out for doctor’s appointments, we commemorated the occasion of being fully dressed with a photo! This was before I learned the horrible news. Here’s my dilemma. My home scale says I’m 200.0 lbs exactly. It measures Andrew to what we’ve found is the proper weight on almost every scale. I went to the doctor’s office and was in a room I’m in only maybe 1/4 of the time. That scale weighed me at 210.0 lbs. Which one do I go by? The one I have access to? Or the one shoved in a corner that had files on it that I don’t even know is in use? 🤔 puzzled. (If this is my largest problem? Thank the Lord! Right!?!?)

My doctor is sending me to the EDS clinic at another hospital, which is confusing, because I thought he was starting an EDS clinic. Either that fell through, or we will have two? We can’t have two. He said the wait list wouldn’t be long, so that’s reassuring. I am starting to enjoy things and pains is getting in the way.

I enjoyed nesting this weekend. It was very enjoyable. I rested yesterday. I was hoping to come home and do some things, but no. That was too much.

My son came and cuddled with me. It was nice. I need more of that. 😊😊😊

Have a lovely day, Zebra friends!

 

Mixed Emotions

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I have the feels again. These are mostly anger and shock. I’m finally vaping the higher dose THC pot this morning. I mixed it with just a bit of my regular stuff because it has certainly little cannabinoid in there and I wanted it to be something substantial, not a desperation experiment. Well, here I am, and my back doesn’t hurt finally. I don’t feel stupid. I feel tired, but relaxed. Cold. My pubic bone hurts. My hands hurt. I don’t feel like sitting around playing video games. I feel productive. Artistic. Comfortable, almost. Getting there. I’m hungry.

I know I’m angry. Angry that I was kept from pain relief because… why? I can’t be in as much pain as I say I am? I must be a drug seeker? I remember joking with a (male, ironically) friend about us potentially being roofied, and surprising some guy/gal by saying “ooh, I feel great, do you have another of those things you slipped in my drink?” 😄 I’m one of those EDSers that is tough to drug. I used to blame my weight, but I don’t think that’s entirely it. I seem to have a high drug tolerance.

My body has been feeling not hellish for five minutes, it’s been nice. I have been struggling through. I put together a post for the beauty blog yesterday. It took me all day, but it gave my day some structure. I took a couple of naps, rearranged some things on my computer, watched TV. It was nice and peaceful. I remember how my parents used to nag me about making friends and being friends and going outside, and I have brief moments of anxiety that I’m not talking to enough people. But then I remember what happened last time I spoke to people, and I hide under the covers.

So, to recap, emotions: anger at my old pot doctor for withholding working drugs from me, gratefulness to my new pot doctor for listening and caring, anger and hate toward my genes for this situation to begin with, happiness at the momentary relief, annoyance at my internal dialogue, bliss at the momentary silence.

I was so out of it with pain the other day my husband came over to help me fid something. He handed it to me and I actually said, “Good Boy!”. WE DO NOT HAVE DOGS!!!

My Botox treatment is on April 4th, so that is one week. I just need to hang on a while longer, and we start the circus again. I can feel the pain in my head returning, I’ve had a slow, dull headache for a couple of days now. My neck and jaw just ache.

I want to crawl out of my body. Just leave it behind like an exoskeleton.

Wishing you a great day Zebra buddies! 😘