Misery Inventory 😭

giphy1Please laugh at my misery. 😁 I am having a pretty lousy day.

It actually started last night. I did my makeup for a friend’s birthday, (once again, just ask) and I was just tuckered. I fell asleep at 5? And asked husband to wake me at 8-ish. He claims he couldn’t wake me. This could be true, as once I was in hospital, and the doctor actually picked me up and shook me, I could feel her do that, I felt myself trying to wake up, but I couldn’t. So I sleep deeply. I have CPAP, don’t worry.

So I woke up this morning, just barely, and my head hurrrrrts. My neck is just aching. I can’t follow a thing. I’ve tried four documentaries and they make no sense. I have to write everything down or it’s gone. I did buy a bunch of journals over the weekend this was so much fun, though.

My stomach is killing me too, though. I have heartburn, unusual. I’m so careful, and have been not cheating. I guess the chips are out. Lightly salted, too spicy. 😐 I am so very nauseated and yet am hungry. Plus my stomach hurts. Just the actual physical area of my stomach hurts. I was wearing a bralettes and it hurt, so I had to take it off. Another day where I can’t wear clothes, they are too much pressure. Physical pressure. My nightgowns are too close around my throat, though I know they aren’t. Any seam hurts. My fuzzy blanket is all I can handle. We’ve had honest discussions with the kids why mommy doesn’t wear clothes sometimes, and why that is a problem in society and we have to give her privacy.

Anyway, my stomach is acting up, but I did have a BM today, which is fantastic! 😀 I used to have to have shots that would reverse the opioids I was on so I could go. It was not a fun time.

But in addition to this, I’m having endometriosis-related cramps, and I can’t figure out why. I don’t know if my body is adjusting to the weight loss, which seems to be stable for now, around 195. Everything hurts for now, and I can never remember what I’m supposed to do.

I finally got it straight with husband. I’m supposed to take marijuana oil and then vape, but I don’t have the strength to vape. I don’t know if I’m just being lazy? Oh, hell no. I am not a lazy person. I really can’t. I don’t think it will do what I need it to do for my neck, anyway. I would really love a bath, but I can’t muster myself to get in there.

The kids are well amused. Daughter is downstairs doing whatever it is she does, and boy is playing the new Nintendo Switch we bought for Husband’s birthday next month. We thought we should get it early and have some time to play it. It arrived Friday, so the boys rushed through their chores, and husband and I had a long discussion about whether he really did ask me to order Zelda or not. I swear he didn’t. I am clear as day on this, but is it just my memory? But I would have no memory of the incident altogether, right? And he forgets to give me the phone every morning so I have to go crawl for it and hurt myself.

So, husband is calling the hospital every couple of days with no response. This is what you get with top doctors. Arrogance.

I have a ton of shopping due to arrive today. At least that should distract. And once I get that bath!

Painsomnia, Regrets.

I shared an article with my husband about one of the Teen Mom’s from MTV getting ‘butt and vaginoplasty’ procedures on-camera, grinning away. And he’s been making hilarious jokes all night. No body shaming, mostly about him going along to get his butt tightened when he’s not being relaxed about things.

http://www.ibtimes.co.uk/teen-mom-farrah-abraham-blasted-posting-private-photos-instagram-do-you-have-no-shame-1633533

This was the story, if you want to read it. I hope they aren’t tightening her uterus. Just, no.

 

I’m feeling sort of low. I’m reminded of so many of the accomplishments of my friends, and I had to cut so many things short. I was reminded the other day of a friend I’d had for 15 years, and was insanely jealous. I had no clue about this. That is the part I feel terrible about. I suppose I don’t spend time with people I don’t like, and if I do, I don’t blame them. But she envied, I’ve been told, my marriage, my babies, and my job with a bank. Oh, and house with another person’s income it was easier. I envied her ability to work and do something besides sleep. Her relationship with her parents, her baking skills, her bilingualism. I didn’t get to say those things because I felt it was weird to be nice sometimes. She would accuse me of buttering her up to ask her a favour.

I regret that I couldn’t finish university. I don’t know how I could have made this work. My dad was pretty mentally ill when I turned 18, and he wanted me out of the house. He wanted me out forever so he could have my mom to himself, but that’s his thing. So when I turned 18, I was out. I had no where to go. I ended up staying with my boyfriend, who was 10 years older. He was living in a different province. He was then transferred to a third province. I tried to enroll in school and apply for a loan, and was rejected. Apparently, my parents made too much money, and should be funding my education. So, I’m screwed, unless I’m married or 25. Whelp, there hadn’t been too much interest so far, my parents had convinced me I’d be lucky to get married at all. And this guy was willing, we got married in Vegas in November of 1989. Same Day as Bruce and Demi.

There are some people out there who absolutely loathe me for this. One even called me out in the middle of my 25 year high school reunion. Where were they, though, when I had no other place to stay? When I could have used maybe a decent boyfriend? Nah, I was too ugly. Nobody has actually come forward and told me why they are upset or hurt. I’m actually completely bewildered. I have not come up with any sort of explanation for this. I wasn’t even that close to these people. People are always looking for an excuse to hate you. It’s like a rubics cube.

Yes, my first marriage was brutal is a lot of ways, but I did learn a lot, also. Whatever the case, it led me to my current husband. The place I am meant to be. Sometimes you need to go through hell to get to heaven.

I hear other rumors, though. I hear whispers about my “perfect family” and “privilege” that got me a house in downtown Toronto.

Hey, there. I hear your whispers. I see your glances.

I have some privilege. But don’t you dare forget I worked three jobs for seven years, two of those years while going to school, when I did dip down to two. I have been working since the age of 12, securing them and transporting myself.

I have endured five laparoscopic surgeries while working, most of them taking less than three days off for recovery, instead using weekends to recover. All while in increasing pain, exhaustion, being told I was fat, work out more, eat less, and get over it.

Divorced the first guy, married the second, kids were supposed to fix the endometriosis. Had 2. Got sicker. Finally had to concede working.  Sister in law asks while pregnant with #2 “Why would you have another baby if you can’t look after the one you have?” Because we put my daughter in daycare after I tried to go back to work and failed. Nice. My husband is an incompetent child rearer? Thanks. On LTD.

We desperately wanted a third child, but decided we could not afford financially nor emotionally to support one.

My children, both with Autism, act well in public, but are becoming troublesome in private. School refusal has been a problem with the boy, and I don’t know how next year will be.

So if anyone wants to trade lives with me remember, I envy those who:

  • Can get up and go for a walk
  • Can eat some food, whatever they like without stomach cramps
  • Can get up and go somewhere
  • Can stay awake for more than 3 hours
  • anytime but midnight
  • Don’t hurt all the time
  • Can have some fun
  • Can go dancing
  • let’s go shopping!

 

I’m really okay, my husband is the best. He is so sweet to me. I wouldn’t travel this journey without him.

I suppose someone else (me) being content is really tough for people to figure out. True no drama.

 

Right now I’m in so much pain I can’t sleep.

  • Gastroparesis means my bowels are full and rumbly. They’ll be like this and cramps for a while
  • My neck is screaming in pain
  • I have something across the back of my head that hurts. Long ago head injury?
  • I may have a cyst on my ovary, occasional cramping
  • My back hurts
  • jaw pain from head troubles

Actually, not a bad evening. Going to try to sleep.

 

Summertime and the pain is …

giphy2

My symptoms tend to alleviate somewhat in the summer. It doesn’t mean I’m cured by any means, but I find my knees don’t ache as much, nor do they pop and crack as much. My muscle aches aren’t as intense. My elbows don’t feel as brittle, my hands ache, but they don’t hurt as badly as they do in December.  My neck has been quite a bit better, with my head pain bein not as intense, although that could be the Botox injections.

I heard from the EDS clinic after we followed up. They are waiting for info from my doctor, which they requested May 9. He swears they didn’t receive it. Waiting time for the clinic is 6 months. They have wasted 2 months for me. I am so angry. My husband is handling this because I don’t think I can be nice about it.

My cannabis doctors office called to reschedule my appointment on Friday from this Thursday to tomorrow. I was upset, and I let it show in my voice, it was trembling. I said I was upset and my husband would have to call back because he has to bring me and he has to take time off work. Well, this person got all snippy with me! She exhaled sharply and told me he couldn’t book appointments for me. I protested he’d been doing it for the three years we’ve been patients. She relented “Oh, yeah, I guess he is on your file” Fine. So husband calls, and the only appointment I can get before my expiry is the one offered, and it isn’t even with my regular doctor! Now, I do have some responsibility in this, as I had to cancel my appointment because I was ill. However, we book 3 weeks before my due date (June 29) because there’s a chance I could be ill. They could only offer me the 13th. I need to be renewed before Monday the 17th. They have rescheduled the last three appointments at the last-minute, and it is infuriating. I believe they have rescheduled many more. I have rescheduled two because of severe contagious illness. This, plus the location of the building means I can’t make it to the building unless I have a certain amount of stamina. The building is on one of the busiest corners in the city. (Yonge-eg for anyone who knows Toronto). So, either 1. my husband has to drop me off at the building where there isn’t parking and there are no seats in the lobby, so I have to be dropped off and have the stamina to make it up the stairs and to the office.  2. I go to parking with my husband and walk to parking with him. 3. We rent a wheelchair (or buy) and then the parking situation becomes more realistic. 4. We take a cab to the office building, which drops us off in front, however, we have a long wait to hail a cab, I have nowhere to sit (except the floor) and the walk to the taxi stand is just at the furthest limit of my walking ability. So we will take a cab and I will suck it up. I’m so brave! 😄

I guess I’m so sick of after all that time the first doctor spent treating me like a drug seeking video game player, now they’re upset that I’m actually disabled and need assistance because of it.

Even though the pain might be less, my joints are very wobbly.

I think it’s rainy this week, which is making my head sore, which is making me kind of grumpy. I should probably stay off social media. Find something else to do.

I’ve managed to do a bunch of organization this week. I feel so much better to have lots of things handy and knowing where things are. I’ve organized notes and snacks and email and…everything! I even made lists for everything I needed to speak to my husband about. We arranged for him to come to bed at 7 on Saturday night so we can hang out together. It was great! We got so much done, I don’t think we will need to do that much chatting again for a long time! Ha ha!

I’ve been going to nap for an hour and sleeping for four to six. I imagine my body is healing. I am enjoying it. I feel stronger and stronger.

Dang this headache.

In Pain and Grouchy.

giphy11

All right. I’m done. I am bloody well ready to shut it down and move to the furthest edges of where Sephora delivers. I’m over this friendship business. It’s overrated.

I had a person ask me to join a group she started, because it was a mutual interest, so I did. The members seem to devote a lot of time to this group, and it happened around the time all my major nonsense started this year. I haven’t posted much to the group, nor to this person much, except to explain my situation. She deleted me today, as a friend! (Yes, I have spyware) Now, I don’t hate her or think she’s a bitch or anything, but I think it’s pretty much a pattern of how abled-disabled friendships go. Tons of assumptions are made, three months go by, well – they must be feeling better by now! They must not be interested. Where do three months go? It took me four months to see my regular pain management doctor! So much can be solved by talking. But when you have an invisible illness, who has the spoons? How hard is it to check Facebook, really? You’d be surprised.

20170611_183303

This is a pretty nice picture. Notice my top from Old Navy with the Zebra print. This makeup took over three hours to accomplish. I had to keep lying down to quell the nausea and pressure in my head, increasing my headache. I also was dealing with a broken crown because my medical examination last week was so painful, I grit my teeth in pain, and… well. We do need to wait until after my Botox treatment shots tomorrow, because I get lidocaine and Botox in my jaw and it helps a lot. If I need to sit with my mouth open while they tinker, it just makes sense. I mean, my jaw aches, but it’s only really bad when I bite wrong. So, we don’t need to wait, but it makes sense. In this photo I have that headache, rapping the back of my head, jaw pain, my hands are achy from fumbling for stuff, shoulders are cranky, they don’t like holding cameras, and my abdomen/hip on the right side is doing that “you really could lie down you know, sure it bunches up your neck, but so what?” But I’m still trying to look cute and show off my makeup, because this is the Internet. Everyone has a perfect life here!

Why do I do it then? Because otherwise I just lie here bored. Some days that’s all I can do. Some days I need to get my family in order. Things take a lot longer than before. My memory is bad. It must be the pain. My neck hurts so much. I can barely keep track of what I’m doing.

I have been buying tons of makeup again. Partly because I can’t keep track of what I have. I was half-joking with my husband, saying makeup is all I have. I started listing all the things that were no longer available to me:

  • Sex
  • Watching complicated television
  • Milkshakes
  • Travel
  • Dancing
  • Beaches
  • Carbonated Beverages

I went on for a while until I felt good and sorry and it was no longer funny in the slightest.

However, I have discovered a few things that I can participate in:

  • Iced tea with aspartame (I do not care, this is keeping me alive right now)
  • Watching comedians on various corners of the cable service
  • Wearing my zebra outfits
  • Lovely Brand caramels, made with condensed milk – which isn’t FODMAP friendly, but if I only have a couple I do okay. The Sea salt ones are so good!

 

This cheered me immensely.

My son turned 13 yesterday, and my husband made a FODMAP friendly cake! Isn’t he the sweetest? Chocolate, which is the boy’s favourite. The girl likes vanilla. I can’t believe I’m Mom to two teenagers. That’s so weird. I’m just a teen myself! Well, it seems that way, in my head.

Speaking of my head, I spend most of my day in it. I deliberately stay away from people and try to stay busy. I’m always doing something. I have two blogs. My kids require as much support as I can give them, my husband needs loose ends tied up, and I need to maintain my health. All from my bed! I can get pretty foul tempered when I’m in pain. I want to save whatever good mood I can muster for those to whom I’m closest. I want to be as unstressed as possible, and that means releasing myself from as many entanglements as I could.

I even told my MOTHER I needed some space right now.

I see you people hanging on there. I appreciate the hell out of you.

Don’t think I don’t see the irony of me saying “people should really talk more” and me just dropping out of society, but if you were in my head you would totally understand. I feel like there’s a gremlin on my shoulder chopping at the back of my head. My neck is stiff, it hurts to turn right or left or look up. My jaw is stiff and sore. It’s tough to think and comprehend what people are saying. It’s quite embarrassing. It gets worse as the day goes along. It feels like I was put in a blender. My brain is spinning. It’s difficult to concentrate. I’ve been working on this post for two hours now. I’ve lost parts of it. Doing anything is like this. This is not what I am like. I am efficient and organized. It’s a nightmare for me.

I don’t remember if I said this, but the doctor said he was referring me to someone who was going to examine my neck/head and potentially do a block. I think that’s what they thought, but maybe an MRI first. Or an x-ray. Would be good. I don’t want them poking around without any idea of where anything is. I mean, even the dentist takes x-rays.

My face is killing me. I only need to make it to tomorrow.

Love to you, Zebra pals! 😘

 

My Super Hyped Doctor Appointment!

giphy8

As is apparent, I survived my doctor appointment yesterday. I had some mixed feelings about it, and needed time to process, but on the whole, I think I’m much better today. Emotionally. Physically, too. Let’s start at the very beginning where my happy alarm goes off at 6:00 am, my husband brings me coffee, and I start to look dazed.

First thing I grab my medication. The second thing I do in the morning when I have time is vape. I wasn’t going to have time today, so I should have used my marijuana oil. Vaping takes an hour and a half, start to finish. My therapist keeps nagging me because she thinks that’s too long for medicine to be consumed, it should go faster. Nagging me- she mentioned it twice. It still bugs me. I can’t control this. I didn’t remember my other medication – the marijuana oil – until we were partway there, but perhaps it helped with my sensitivity? Showing them how sensitive I truly am? I don’t know, I probably just screwed myself.

We dropped my son off at school, and proceeded to the hospital where we hung out. The doctor was only a half hour late, but we were treated to a bevy of overly perfumed women (really, don’t wear perfume in a hospital, it doesn’t matter when last you bathed) dramatically emphasizing how they were in the most pain of anybody! So Loud! I felt sorry for each woman in their own way. Each needed something they weren’t getting. And then I looked around and felt sorry for all of us, as I realized everybody had something they weren’t getting. And then the doctor called us in.

New, young, gorgeous, doctor this time. She had read all three volumes of my file and asked for update on the situation. We told her about the head pain. The neck pain, nausea, dizziness, having to lie down. The stomach pain. Just on the surface of the stomach. Did I throw a cyst recently? My pubic bone. My hands hurt, my joints hurt, my knees hurt, Things are not going well.

We discussed the effect of the pain, how it feels, quite in-depth. She wanted to examine me. This was going to be the toughest part.

I changed into my formal hospital wear, and my husband held my hands as she did a surprisingly gentle upper abdominal and lower abdominal palpitation exam. I didn’t scream, only major flinching around my lower right quadrant. It was incredibly sore. She did back off right away. It didn’t hurt so much then, but ten minutes later was …wow!

On to the pelvic. She did some sensitivity testing around my ladybits, and a modified pelvic exam. I’m usually screaming during pelvic exams, but there was no speculum involved. She said I was something that amounts to ‘not letting the horse into the barn’ (my words) and I should probably get back to pelvic therapy. I was teasing my husband that she was trying to tell me I was frigid, but he didn’t know what that meant. I had to explain. Cute.

Naturally, by this time, I’m not feeling too fantastic. We start talking about the weird headaches I was having. My husband volunteers that it was like I have these vertebrae sticking out, and she goes to touch them..

Bad idea!

This send a searing shock of pain up through my neck, up to my head and I cry out in pain. I think I scared everyone,  including myself. The doctor runs out of the room, embarrassed, leaving me to get it together.  I’m scream-crying, trying to hold on until the initial shock of having the top of my head blown off subsides.

I finally calm, husband helps me get dressed, and we wait.

The doctor comes back, apologizing, but saying the demonstration really helped. Even though she’s sorry.

After some back and forth with the Old doctor, where he threatens to cut my medicine down, because I’m on an awful lot, and sometimes too much isn’t good either, which feels like the new ‘lose weight’. I’m not on THAT much medication, and I adjust accordingly. I wish he’d discuss it with me. My husband is dismissive of this comment, but I am not. I feel like it’s a warning, but I’m just a paranoid girl.

I feel like he’s saying “if you bother me too much, you’re getting less medication”. Which is insulting, because hello, not a drugseeker, and we haven’t even discussed the problem yet. Fer chrissakes. It especially rankles me because I’ve been sucking it up for most of my life, pretending I’m okay, pretending I can get by, pretending it doesn’t hurt as much as it does.

After that bombshell, I just kept a straight face, and he continued his best recommendation was to continue on with the Botox treatment as planned, because it does so well for such a large part of me, we will try for a referral to a person who may do nerve blocks or x-rays of my c-spine to deal with the headaches. In the meantime, he is prescribing a compounded cream for my headaches that he said he thinks might help. I can’t remember what’s in it, but one of the things is ketamine. He said I could probably use it other places, too. Last night I was thinking about my abdomen. The pain is about an inch deep, if that. This may be perfect. Here’s hoping! It would be nice to not have to take something that has to traverse my system to work. (I know this enters my bloodstream, but it doesn’t need to go to the edges of the skin to be where it needs to be? But the brain… yeah, right, it’s been a long week)

So, we are just waiting for the magical compound to show up. I don’t know how my hair is going to like it,  but thank God for Olaplex.

The more I think about his recommendations, the more I think he is right, and I think he made good suggestions and I see how they are beneficial and applicable. The cream may be just the thing on my abdomen, as the pain only goes about a half an inch down, I’m excited to try.

We had briefly spoken about referrals to specialists, but in light of the EDS clinic referral, which is underway, I don’t know what will come of that. Does it make more sense, if that is imminent, to see their in-house people?

My memory is improving ever so slightly.  I feel like I’m at least over whatever cold or flu thing I had. I feel so much better than I did!

I spent the rest of the afternoon just flaking out and surfing the Internet and trying to stay comfortable. This morning was pretty much back to normal.

Have a great day, Zebras! 😘

 

PS. Just FYI, the reason I don’t use my family’s names in my blog is simple. I thought it might be too confusing for someone coming in in the middle to figure out which one was the husband, the son, or the daughter. I thought this would be simpler. Also, it gives them some anonymity when we go viral. 😁 I may slip up occasionally.  It’s not a tragedy to me. We aren’t in hiding.

Oh, Great! *Eyeroll*

giphy2

Fantastic development. Along with the neck pain, back pain and dizziness, in there with the nausea and headache, forgetfulness and general discomfort. Alongside the inability to sleep properly and horrible concentration, it seems I’ve caught the cold the kids were passing back and forth.

Fortunately, it’s not too bad, and the CPAP machine I use tends to cut down on the amount of mucous in my nose, so I have fewer breathing issues. I just have a vague sore throat and have this mantle of exhaustion that is unusual. I’m used to being tired, but I’m achy and uncomfortable, I can’t settle. I think that tipped me off that something was off. Also, my nose is booger heaven – ugh.

Lack of quality sleep is not helping my concentration or cognition. I will be watching a show, it will cut to commercial, and I will completely forget what I was watching. I’m having trouble communicating verbally, still, most of all, and paper is only marginally better. (I could be writing my name over and over thinking I’m being brilliant right now!). There is one Simpsons commercial that comes on, and I get so excited, thinking I’m watching the Simpsons. I feel like such an idiot when the commercial ends.

My Mom seems to think my family has terrible luck and absolutely everything happens to us. I admit, it does sound shocking to listen to someone with chronic pain describe flare-ups. I had been silent for years, but I think people ought to know what my life is like. Not in a complaining way, but in a this-is-how-people-live way. People have chronic pain. This is my life. My kids have had quite a few illnesses this year, yet this is my first cold, I think, since being ill at Christmas, with the rest of the world, and it’s mild. My husband has glaucoma issues, cataracts, and arthritis. Both run in his family. My kids have Autism. Sounds like a lot of families I know. Maybe these families aren’t so open, I don’t know.

I should get that nap.

Stay stripey my Zebras! 😘

Not Having Fun!

giphy1

Well this is a fine kettle of wax. Or ball of fish. My treatment appointment is actually on the 13th of June. I’m not pleased. My head is hurting again, as is my back. And it started about a week early, too. I kept saying I think it’s next week or the week after. I vaguely remembered it was after my boys birthday, which is on the 11th, and I was mildly upset I wouldn’t be feeling well on his birthday.

However, I see the same doctor on the 8th for a consultation. Perhaps it’s better I’m unmedicated by Botox. That way he can see what is really going on.  I will need to discuss with husband my goals and wishes for the appointment, because he will need to summarize and translate, likely. I’m in bad shape. If I spend any time not on my side – ie in any other position, I get a headache and nausea and back spasms. The headache isn’t bad, but the jaw pain is. I’m a grinder of teeth. I do wear a mouth guard when I sleep, but it needs replacing. I just have not been well enough.

It feels like there is a point at the back of my head, and when I’m lying on it, it’s wearing down or bruised? It hurts, but it’s the only way other parts are comfortable. I will roll over and nap soon. My husband thinks I should sleep all day. I haven’t been sleeping at night. I’ve been having good naps from 4:00 to 8:00.

When my neck gets all stiff and sore, and my head hurts and my skull hurts, my cognition gets totally screwed. I honestly giphycan’t reason, it’s such a bizarre feeling. On top of that, I can barely remember the words for most things. Yet, I lie down for a while, it has to be on my side and things get much better. If it’s raining, though, things are almost intolerable. The pain is always bad. Turning my head too quickly is a nightmare. The symptoms get worse the longer I am not on my side, too. I can feel the pain ramping, so I will be going to have that nap now.

My son’s birthday is coming up and I need to prep for my doctor appointment, so if I don’t touch base or check in, I’m rationing my time as much as I can. Know I’m thinking of you, I will be in touch when I can.

I was going to type something and it’s gone from my head. I hate this feeling. It’s not me at all. My husband said ‘it happens to lots of people!’ Not to me!

Oh yeah! It’s funny, my pain always seems to ramp up towards Friday. My Mom said I used to do this as a child, too – I would wait until the weekend to get sick. Hmmm…

Be well Zebra pals! 😘