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!

💜

Why do People Gotta be so Mean?

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WARNING: MAY BE A BIT RAMBLY AND DISJOINTED. STILL NOT AT 100% MAKING SENSE. STILL FLUISH.

It’s Monday afternoon and I’m on my way to feeling human once again.  Somewhat. I am fairly sure it will take a few weeks before I am completely back and feeling whole, as it sometimes does with colds. It’s funny, it’s not always the really heavy colds, either. This one I had a light sore throat, but I was so tired, and those sores on my tongue came back. They seem to come back now the second I get run down. They are terrible. I can’t have more barriers to eating!

Yesterday was my husband’s 49th birthday. He looks much younger. He was asked last fall to join an under 30 kickboxing club. 😂 He declined.  The family finally got me to move at about 4 in the afternoon. I was still very weak, but I hung out, still in bed, because I’m always in bed, tried to be a good sport, and tried some food. My husband had made some FODMAP friendly brownies, so I had a couple. He eventually made me a smoothie, which I spilled all over myself. Yay! I’m just waiting to take a bath.

My head is really hurting today. It never ends. It’s nice my brain decided to ease up while the rest was acting up. Or I didn’t notice it.

The hospital hasn’t called back, and it’s long past 48 hours, so I assume we aren’t dealing with an infection. So, it looks like I have to face facts and will likely have to find a new GYN. I love mine, but she isn’t available enough to me, and did not return my husband’s call. Can’t work with that. I don’t have the energy.

So, I can’t remember if I mentioned this, but I’m too weak to check, as we were leaving the exam room, we walked by the patient at the nurses station on a stretcher. Obviously, I was in a room because of the examination that needed to be done. The patients partner was sitting crossways across the bed and my husband walks past, holding my hand, I’m clutching my stomach, and she stretches her legs out and tries to kick me in the knee. She just barely makes contact, though, short-legs-having-bitch. Why?

Then I get out to the waiting room, I had to make sure I didn’t hallucinate this one. This woman was sitting in the waiting room, and it was about half full. My husband found the closest chair and dumped me on it, and this woman was sitting across from me. Husband goes to get a cab, and she goes “Ha ha” and I assume she’s looking at her phone, but she’s staring me down. I just put my head in my hands. She may have taken a photo, because she had her camera out and in position, but that didn’t occur to me until later. 6 mg of morphine, remember. I did not fall asleep! But I did get somewhat stupid. I remembered what happened, but it took me a while to parse it. She looked so normal! Then this guy came out that ahe was with, and he did not look, uh, well. I appreciate a man who works with his hands, but this man looked like he worked with his face! Wow! I don’t know the relationship, but the age difference looked huge! I’m biased, because my ex was older and it was bad. Strange people everywhere.

I don’t understand deliberately trying to hurt someone. And on that note, a big shout out to twiggyjen44 whom I may have been inadvertently ornery with in my cold/pain/drug induced haze. I am very sorry if I was snarky. Thank you for your help and advice! 💜

Over this next week I’m going to work on recovering my strength before making any decisions. I seem to have had one round of bleeding that has stopped. Perhaps my lining had just built up enough that it needed to slough. We have moved my cranberry pill to the morning, so that should help with any chronic yeast problems.

Oh! Yes! When the nurse was inserting the iv into my hand, she really crammed it into the back of my hand. I heard it pop when it entered my vein. That has never happened before.  But I have the teeniest of yellow bruises. I am one Zebra who doesn’t bruise! And another thing, my body should be stretched out from being fat, but it snapped back! Reverse elasticity? 🤣 I think my skin just isn’t very involved.

Another thing at the hospital, while I had my blood drawn, this woman came in, she was in her large 60s, she approached the triage nurse. Patient explained she was at the ER and the doctor wanted her to come back for a follow up test. Triage nurse explained patient had to go to her GP. Patient claims the doctor told her to come back here. Triage nurse tried not to roll her eyes and started to ask the patient questions. Which start to go in circles. We go through this whole routine three times, at which point the patient decides she wants to come back tomorrow, and tries to book an appointment. All the nurses were listening in by the end, trying not to either laugh in sympathy or strangle the patient.

When I was still waiting in the hall, one lady jumped up because her partner was getting worse, they were worried about his heart. She bashed into my stretcher, which hurt so much, and surprised me, I felt so bad for calling out, but I couldn’t help it. She apologised, but her mind was elsewhere, of course. Goodness. I’m such a jerk when I don’t mean to be. It’s good I don’t go out much! 🙊

I must admit, though, even though I had to spell Ehlers Danlos for them, I did get treated awesomely. Adequate pain management, no drug seeking questioning (it does help to go to the hospital that does administrate my pain management), thinking ahead so I didn’t have to move too much, all in all, the staff was very considerate.

Okay, I’m going to go find someone to monitor my bath. I fell a couple of weeks ago, and I like to have someone keep an ear out for giant splashes or thuds.

💜

A Word on Munchausens Syndrome

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I have been reading a couple of articles on Munchausens, Munchausens by proxy, and have watched the documentary on Gypsy and her mother, and I find Munchausens Syndrome quite fascinating. I don’t understand why someone would choose to fake sick in order to gain attention. Yes, the answer must lie somewhere in the pathology of the illness, but how does the attention actually work? See, I have more than one verifiable illness and I am not drowning in pity and attention. Perhaps it’s because they don’t actually have the illness in question and have the energy to troll for it? Maybe because they usually invoke CANCER which for some reason gets everyone’s attention. I’ve never understood why cancer is held up above all other disease. It’s interesting to me. It is very serious, usually, don’t get me wrong. Maybe because we all know someone with it.

I mean, not that I want attention so much as it would be nice if people noticed the struggle and thought I was doing awesome. It’s better than being invisible.

 

Today went downhill fast.

My head is really in bad shape. My neck is awful. I didn’t sleep well last night, the pain was so distracting. I’ve been eating chocolate trying to soothe, which is a bad sign. I should curl up and either relax or sleep. My face hurts so much. I have intense abdominal cramps, and I’m spotting again or still, I’m not sure. It’s getting to the point where I can’t just wait it out much longer. I don’t know if the EDS clinic has a gynecologist on staff. There was one at the pain clinic, and I did see her privately, but it was kind of a pain to get in. My GP will not deal with this, so I’m not certain what to do. There’s always the possibility my Mirena has pierced something. Not pierced, um… shifted and embedded somewhere. I’m on a lot of medication, who knows what I feel and what I don’t? Sigh.

I need to see to a nap. I’m becoming incoherent. And grouchy.

💜

Mercury in Retrograde

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Mercury is supposed to be in retrograde the last two weeks of August, which is why I’ve had this horrible feeling of dread. Or so I’m telling myself.

I was so restless last night, I just could not settle. I was tossing and turning. I had to strip off my nightclothes, as they were getting all twisted up. I tried to make myself a nice pillow fort, but it didn’t work. Mostly, I kept swallowing air and having to sit up and clear it. Very uncomfortable. Not so ladylike, either.

I did fall asleep around 2:00 PM, though, and sleep until 9:00 PM. I usually have no trouble going back to sleep. I’ve been just exhausted, especially after getting outside to see the eclipse! (I will post about that soon!) .  At one point in our history, people used to go to bed around 7:00 PM, sleep until 11, be awake from 11 until 1 and then sleep from 1 to 5 or 6. I could live like that quite happily.

I don’t know if you believe in numerology, I tend not to, but this year my age is divisible by 7, and those do tend to be big years where I re-invent myself. I feel different this year. I have a new outlook. 😊

I bought yet another elbow brace. Size XXL.  Now, I’m not that big anymore, why do I need an XXL? Otherwise I’m ripping them off in agony in the middle of the night, only after a few hours. This one lasted seven. I do feel better, but woah, it’s sore. My hands are sore, too. I’ve been trying to rest them, but you really need your hands! XXL is pretty tough to find. I’m actually using sleeves, not braces. I will save braces until I’m fitted by pros.

Yesterday was supposed to be my BOTOX injections.  I haven’t heard anything from the clinic, but I’m doing amazingly well, considering. I’m not having that much head pain at the moment, but it does ramp up quickly as the day goes on. I’m having a ton of abdominal cramps. I am wondering if my cpap is contributing to my swallowed air. I need another sleep test. I’m to have them for every 20 lbs I gain or lose and I’ve lost 115 lbs without any follow up. It’s straight up due to my mobility. And, the pain therein.

And of course, just the stress. I feel stressed. I don’t really know why. Maybe it’s the start of school again. I worry about my kids. My boy didn’t have a great year last year. Grade 7 sucks, though. I need to focus on being relaxed today. My breathing. Relaxing. Perhaps some organization if I can. I love that.

My corner of the bedroom is bringing me joy. I am organizing things so they are easily found and accessible. I have a bunch of trinkets and items to make me happy. Netflix on the television, my makeup organized and close by. Masks and makeup products. Some cool magnifying and fisheye lenses, a zebra striped cuddle blanket. Enough braces to brace an army. Iced tea and lip gloss.

Life is good.

💜

In Pain and Grouchy.

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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.

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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! 😘

 

New Attitude

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I’m not gonna lie, the death of Chris Cornell has hit me hard. Aside from the usual fangirling, the man was only 5 years older than I am.  His voice is just something that moves me like nothing else. I’ve been randomly bursting into tears. But it really has brought about some changes and reflection.

Honestly, everyone, absolutely everyone has baggage we can’t

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Chris Cornell 

see. So why is this world becoming so very hostile? I truly don’t understand, but I am not about to be trampled any longer.

All my life I’ve tried so hard to be wonderful, to be accepted. To have friends. To be loved and nice and well thought of. What has it gotten me? Some truly outrageous behaviour by some people. 

  • A person I went to  high school with lectured me in front of a group of people at my 20 year reunion about what a stupid mistake it had been to marry my ex-husband.
  • My mother in law tried to convince my husband to take our two kids and leave me because I was sick. She was convinced he could find someone ‘well’ to look after him, because that’s what he deserves.
  • She also refused to have my name put on the car insurance for the car they essentially gave us because she didn’t want me driving it for ‘fun’. I wanted to be able to take the kids to hospital if need be. Husband threatened to return the car. I never drove it anyway. I’ve given up driving because of my medication.
  • My ex husband offered his business associates the opportunity to have sex with me in lieu of the money he owed them. I found this out years later. I was not complicit.
  • I chose a certain woman to be matron of honour at my wedding, she told me many years on another woman was so bitter about not being chosen she complained the whole time. Why did I have to know? I was friends with the complainer for another ten years before we had an ugly breakup where she accidently sent me an email saying ugly things about me.

So, my point is, if I’m getting this treatment after trying my hardest, why am I trying so hard? This is, of course, not an exhaustive list. I don’t know why I inspire such hatred sometimes. Such loathing. My good friend’s husband still hates me 20 years after I had to drop out of their wedding. I don’t think he gets that my then husband took every dime I was making and was alienating my relatives. I couldn’t go to them. I still cry at night over that.  Why do people seem to think I’m unaware of the stupid things I’ve done? Or maybe there was good reason?

I’m sliding into a mode where I can only do for me now. I wake up. I coffee up. Med up. Breakfast. Vape. Get some makeup. Why do I makeup? Internet likes? No. But it’s fun to show my work. I like to zen out. I can relax. Be creative. And I can touch a part of myself that doesn’t hurt. My face. It takes two sometimes three hours to get my face on and photographed. Not because I’m slow, but because I need to rest so much. I lie down and get my pressure regulated or rest my hands. Then I nap. Dinner, visit with husband, bed. Meds in there, interspersed. My kids visit. They’re pretty independent. They need me, though. Don’t get me wrong.

Frankly, the way I’m feeling, I could really sleep all day. Every day. But really, that’s no fun at all.

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EDS Awareness Look

My head and neck are still bothering me, and are really ramping up, in fact. Yesterday was bad. I did a makeup look for EDS awareness month, and I was so tired after. I wanted to post to the blog, but I was going to have a quick nap. Four hours. Probably best that I didn’t. It would have been angry.

I have been wracking my mind. If your relationships are all crap, you should really look at the common denominator. That’s me. I need to change something. Everyone can’t be a jerk, right?

I do have some very loyal friends, however. Don’t think my life is bleak and terrible. Oddly enough, they almost all seem to be nurses or have chronic illnesses themselves. I am constantly amazed at my husband.

I often wonder: do I not share enough? Am I not upfront enough? Am I too retiring? Am I too pushy?

But you know what? I can’t anymore. I just need to live. I will continue to be kind, as always. Respectful, of course. But I can’t work so hard anymore. I need to focus on myself. I need to focus on me. I’m project #1 right now. Family is second. I used to worry there would be nobody to attend my funeral. I can’t anymore. I can’t worry about my afterlife when I’m not even living this one. Such as it is. It’s mine.

I need to build it.

Have a great day, fellow Zebras! 😘

Refinery29: 12 Women Discuss Whether They Regret Their Decisions Around Motherhood pt 2

Refinery29: 12 Women Discuss Whether They Regret Their Decisions Around Motherhood. http://google.com/newsstand/s/CBIwle2Szzk

This is such a fascinating article. I never had doubts about motherhood. Well, let me explain.  Throughout my 20s, I had assumed I would remain childless. Partly because of my five operations for endometriosis, partly because my husband was not suitable for raising children with, and partly because my mother told me I’d make a terrible mother, as I’d hate it.

giphy15It turns out I’m having a blast. I don’t like kids, much. We don’t relate well, but mine are awesome. Other people have said just that. It is quite a struggle with managing my pain, but I have an extremely supportive partner, who works with us as a team, not a sperm donor. He attends all our appointments, as the kids are both autistic. Our 15-year-old girl has Aspergers, our boy is 13 in June, is part way through testing. They are certain he is on the spectrum, but resources are so limited, they have to test further up the line before finishing him up. My husband has Aspergers as well. He cloned himself when he made my girl! 😂

I work hard to find other things to talk about besides my children. I have many child free friends. In fact, I was on those boards in the 90s! I even campaigned for a hysterectomy for a while, as it was the only thing on offer to really ‘cure’ my endo.

My life would have been very much different without children. I may even be in less pain. I certainly wouldn’t know the love, wisdom, and depth of spirit I do now. We had discussed the very real likelihood I might not be able to conceive. When my now-husband and I met, I was 28, he was 30. (It was Halloween, 1998, my birthday is November 3, I was 27) Wednesday moved in together officially in July of 1999 (unofficially, much earlier, but we got a place together in July) and on November 13, 2000 I got pregnant for the first time. This was my ectopic pregnancy, which had given us so much hope! I could at least get pregnant.

I started bleeding on Christmas Eve, 2000 in Barrie, an hour’s drive north of the city we live in (Toronto). It started getting bad, beyond spotting, so I had husband take me to the hospital. At the hospital they told me their ultrasound technician was off for the holiday (1:00 p.m.) but my cervix was closed, don’t worry. Meanwhile, not fine. We have holiday dinner at my brother and sister in laws house with parents in law, while I am bleeding, and cramping and trying to hold it together while I know I’m in hostile territory.  We had planned the surprise for tomorrow, but I’m scared as hell and turning ghostly white. Husband finally makes announcement he’s taking me back to a better hospital. Oh, and that I’m pregnant.  Mother in law holds her head in her hands. Drama queen. We traipse off to the hospital, where I don’t remember what happened, but we have to keep my parents’ car overnight. I have to tell everybody over the phone the good news. I at least get to sleep in my own bed. The next morning I went back to the hospital and they ran tests on me. They discovered I had an ectopic pregnancy. The embryo had stopped growing in the fallopian tube. If it had decided to rupture, I could have died. What kind of hospital doesn’t have an ultrasound technician? Doesn’t think of this possibility and suggests I try another hospital? I was lucky enough that they caught it in time and two doses of methotrexate took care of and dissolved that blockage. Because, after getting the all clear, it only took us two months to conceive our daughter. The original plan was, we would try the 6 months leading up to the wedding, and then immediately after, start IVF. Usually they make you wait a year, but they were so convinced, and worried about my advanced age and surgeries. I’m so glad to prove them wrong. Husband takes all the credit!

We were planning to get married the following October. October 16 is the ‘family’ wedding day. Rebels that we are we married on the 20th of October, 2001. I was 5 months pregnant with Dorkus.

I remember those nights of pulling my daughter into bed because she wouldn’t stop nursing. She eventually stayed there. I’ve had days of stumbling around and not being able to see, so tired.

But she grew, she became more independent. It wasn’t long before I wanted a bigger family.

I must say, being adopted by my dad, with a half-sister, having genetic relations around is neat!

Honestly, my menstrual cycle returned in July, 2003. September, 2003 I had an ER room visit where I was clutching my abdomen in pain. I could barely speak, I was moaning. They were certain it was my appendix, although they couldn’t find it on ultrasound. They decided to go in after it. They removed a perfectly good appendix and I started my period the next morning. The nausea from the anaesthetic lifted after two weeks, but then I started getting sick again. Our boy was born in June of 2004.

I’ve never regretted them. They are my family.

Just today, I had such pain, I needed comfort. I asked my son to come snuggle me. Just sit with me and watch the Simpsons while I fell asleep.

Best nap ever.

One one side, I do have incredible pain and very little to no support from extended family. On the other hand, I have an extremely supportive, willing and able-appearing partner, who pushes through the pain of his own arthritis to keep us on track. We are in a first-world country with adequate health care that I have extended benefits for and the income to access, not to mention the skin tone.  This all contributes to making things slightly easier for me on that side of the equation.

Although, we left our kids with a sitter to actually go out, once. We went to my high school reunion. 25 years. Back in Winnipeg. We had adjoining rooms and the kids bounded in the next morning and wanted to know who was in bed with me. They didn’t recognize their father. 😄

I think we’ve left them with my parents a couple of times? Few? My Mom has taken our daughter to the library, we’ve spent time with them. Husband and I went for dinner for an hour and a half. No more than six times for sure. We just didn’t see them that much. Never with his parents. I was in labour with our son and we had asked them to come stay with our girl. They wanted to take her to their house and hour away! No! I want her to meet her brother! First! They didn’t get it. My Mom to the rescue! Or I would he rave been alone.

I don’t know if I told this story. I tell about my daughter’s birth, but when my son was in labour, the nurse checked my progress with two fingers and he grabbed them! She said he must have had his hand up by his head!

Parenthood: I feel like I’ve been given the greatest puzzle to solve. The more I put into it, the more love I get out of it.

Goodnight, Zebras! 😘

It’s the middle of the night, I hope this makes sense! 😘😘😘