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! 😘😘😘

Friends (do do do doodelly doo)

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It has been said every seven years one undergoes major life changes. Or maybe that’s Scorpio. It’s held fairly true in my life, anyway. I turn 47 in November, and my life is undergoing some real flux. One major area this is occurring seems to be friendships.

I’ve had a complicated relationship with making friends most of my life. Both of my parents have mental illness issues, and were constantly coaching me on how I should be interacting with my friends. How I could be doing better. The other messages were that I’d better hang on to any friends I get because I’m ‘ugly, stupid, and weird’. I think the motivation was to keep me from having a big ego, but I was crushed. The pain I was in with the endometriosis every month, plus my EDS pain, dismissed as ‘growing pains’. I started working at age 12, since my parents decided I should pay for everything. They would provide the room and food, which I rarely ate because I was already having stomach problems, and I bought everything else. They provided an allowance of $60 a month I think.

I barely had time for friends, but clearly I had to do whatever anyone asked of me, because that’s what friends do, right?

Set me up for 30 years of misery.

In my 20s I worked three jobs, I didn’t really have time for friends, I eventually moved away from all my high school friends, being nuts while on opioids alienated most of them. Some hate me because of my ex husband. Most have no idea what it was like growing up in my house. The suicide attempts.

When I was in my 30s I joined a baby names board. It was fantastic. I had a tribe. Until someone decided I was an addict and called me out. Nobody defended me. Lost a lot of people. I wasn’t an addict, but was on those damned short acting opioids that weren’t that great. Dependent yes. She was saying I was Rush Limbaugh.

Our friendships moved to MySpace then to Facebook. I got closer to some people. I was still mobile, seeing people at Meetup.com and having friends. But all my guy friends were still handsy, and my girl friends all required gifts and only talked about themselves. But that’s the cost of having friends, right?

I hardly go on Facebook now. I mean, a couple of times a day, vs sitting on it like before. Before, I used to chat with friends, but now everyone just wants to argue or sell you something or have sex.

I used to post on friends’ statuses, but now their friends want to aggressively argue with me. Or criticize. Or completely ignore. I don’t think it’s personal, I think it’s what the place has become.

A bunch of my friends have drifted away. The bunch that I talked to on a regular basis. What a strange coincidence. This hasn’t left me friendless, of course. But the ones I have remaining aren’t the ones you speak to every single day.

But you know what? I feel peaceful.

I feel like I’m not pretending to be someone I’m not. I’m engaging with people in small bits. I’m not overwhelmed. I’m not angry. I’m not listening to people’s problems.

I am able to engage with people I care about.

Perhaps it is just that I don’t have the energy right now to be more to anyone. My son has been coming for snuggles each night and it’s wonderful.  We need the connection. I owe my Mom a phone call, but I just don’t have the energy.

I’m finally learning to set boundaries.

I’m trying to let myself not feel guilty. There’s a stupid tape in my head about having to be social. It’s idiotic.

Maybe we will drift back together, maybe not. Maybe we’re just keeping different hours right now and things will change. Maybe they are ghosting me. I’m focusing on what I can control. Those who are responsive in my life, and what I can do to be comfortable.

Am I horrible?

My headache is subsiding, I just want to sleep 💤💤💤!

Have a great day Zebra pals! 😙

PS, I was having a ruminate about what bothered me so much about the men (and women) being forward on Facebook messenger.  There are two things. First is it’s rather like being cold called in your messages. Another telemarketing tactic? Although, with the amount of sales going on, yeah. And Second, you are treated rather like a non person. As I move through life having things explained to my husband, being shoved out of the way in my chair, it feels really great to be reminded I can’t even participate in the dirty nasty with my own husband.

Maybe it would make me less grouchy? 😂😂😂

State of the Union

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This .gif is from Idiocracy if you don’t recognize it. I don’t know what I’m doing using American imagery, being Canadian, but this is one of my favourite movies. If you haven’t seen it, do and soon. Written and directed by Mike Judge, the guy who did Office Space and King of the Hill, it was released in 2006, he now says “I didn’t intend it to be a documentary”!

A lovely woman has been messaging me on Facebook messenger, and she has been sending me greetings such as ‘have a pain-free day!’ I appreciate the sentiment, but I finally had to ask her to please say something else, as having a pain-free day is so unlikely as to be impossible, and it is almost depressing! She was amiable and lovely, however, it made me think of all the things I take for granted that people know.

 

What is ‘wrong’ with me

At this point I have a few diagnosed illnesses.

Endometriosis

This was my first diagnosed illness. Endometriosis is where your uterine tissue grows outside your uterus. It can cause organs and tissues to bind together, and horrendous pain during periods. I was diagnosed at 19 by a gynecologist through a laparoscapy.  I have had five laparascopies to remove adhesions, tissue, etc. My bowel and bladder are most affected.

Migraines

Migraines started monthly, soon after my periods started. As the years continued they became more frequent. By the time I was 40, they were up to two or three a week. I started on Botox injections shortly after. They were lifesaving.

EDS, Ehlers-Danlos H3 Syndrome

I was diagnosed with EDS at age 44 by a geneticist. She was not impressed until I put my leg over my head while standing. Ehlers-Danlos Syndrome is caused by a fault in a person’s connective tissue and collagen is made improperly. This results in myriad problems unique to each person. My stomach and digestion, as well as knees and neck seem hardest hit. And my wrist from years of computer work is very unhappy.

Fibromyalgia

I’ve heard this word tossed around a lot. I’m not certain it applied to me. For the longest time I actually didn’t believe in it. I thought it was something doctors used to fob off on whiners to get them to shut up. Now that it’s been explained, I understand a bit more. They suspect it’s been brought on by the continuous pain I’ve been in, my body is essentially misfiring pain signals constantly.

IBS – Irritable bowel syndrome 

They are definitely not in good humour, that’s for darn sure.

Hernia

I have a microscopic hernia in my stomach that people muse about whether is causing a problem or not.

Swan neck deformity 

This is more just interesting. My fingers are bent at the tips, so they look like a swan neck. It’s fairly common in EDSers.

 

What is being investigated

Carpal tunnel

I’m having massive wrist problems, my GP said this is what it was, but didn’t really examine me.

Complex regional pain syndrome

Something to do with my abdomen being so bloody sensitive to touch. You touch it and I jump sky high. It’s terrible.

Gastroparesis

I likely fit the definition for this, just no one has said the words.

 

Who is involved in my care

Right now, the people involved in my health care are:

My husband

All around point man, food getter, diet manager, cheerleader, favourite person.

GP – General Practitioner

He is really good at referring me to people. I have been with him for over 20 years now. Nice guy, no clout.

The Pharmacist

My hero. This guy is great. He extended us credit when we were poor, keeps me from dying prematurely. You know, regular stuff.

Pain Management Doctor

I love this man. He is impossible to get an appointment with at a decent time, but he looked after my pain when it was critical. I will always appreciate that.

My Therapist

She has had me do more work than anyone, but she is amazing! Adore her. Tough, but fair. Lucky to have found her.

My Dentist

Really good dentist, up on the latest pain management techniques, too bad he is on the second floor. Luckily they book me for same-day visits. I can go when I feel good.

My Cannabis Doctor 

My new doctor is so good! She listens! She cares! I adore her! I am so lucky!

My Gastroenterologist

Ugh. This guy. I need to go back, but I don’t even want to. I don’t think he knows what to do with me, and I’m not sure it interests him.

My Nutritionist

Still have not been able to set up an appointment, so I might have to contact the hospital liason.

My Gynecologist

She is a hoot! She told me one of her friends is a dentist and asked how she could look at vaginas all day. She responded with ‘how can you look at teeth all day?’ 😄😄😄

My Respiratory Specialist

I love her! She monitors my CPAP machine and my sleeping. I need to go and see her again, as I lost 100 lbs, we may need to adjust things.

 

People I need on my team

Carpal Tunnel Doctor

I have a name, I’m seeing my doctor in ten days, he may refer me to someone internally. He referred me to a hand specialist, but she retired.

Knee Specialist

You know how puppets ‘walk’? I feel like I have to kick my legs out to the side to make my legs work. It’s weird. And my knees are all wonky, like they are sliding around. It’s uncomfortable.

Physiotherapist

I know a great physiotherapist, I’m just in too much pain to get up, dressed, there and back by myself.

Pelvic Physiotherapist

I did this for a bit, but same as above. Too much pain to get up, dressed, there and back by myself.

 

That’s where things are as of right now. Unfortunately,  it looks like I’m going to have to sleep again today. 😔 I’m so annoyed.

Hope you’re having a great day!

Have a stripey day, Zebra friends!

 

 

 

 

Frustration

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There is so much truth to the old adage that says your life can’t be running well in more than one place at a time. So while my body isn’t in pure agony, all my relationships are in relationship hell. Well not all of them, but most of them, and some are actually just in relationship purgatory. At any rate, I sure am feeling low today. I’m just going to muddle through as best I can and see what happens. 8m just not certain what else to do anymore.

For the record, I don’t think everything happens to me. In fact, I’m pretty certain we are all blessed fairly equally in life, if we look at things. We don’t all have money or friends or health or brains to fall back on, but over a lifetime, I think most of us get lucky in a couple of places. We get a good spouse, or we meet a good friend, or we have luck with money, or we are lucky with our careers, or we have good health. I think we get pretty even in the end.

Since I’ve graduated high school,  I haven’t had a good friend who has had time for me, and I don’t mean every minute of every day, but once a week for fifteen minutes, and a genuine desire for my friendship, not seeing me as the crippled friend collectible. I’ve started a few friendships, they’ve fizzled, usually because I can’t get out, or had to cancel plans too many times, or things just fizzled. There are the friendships with men, where they always wanted something more. I have one friend now, everything I post something that triggers her on Facebook, she posts about how privileged I am. Lots of friends post about how we need to make the world more accessible, but not a single message asking how I’m doing. Disabled in the abstract is fine, but do you really want to deal with them one on one?

My husband snapped at me last night. It was even more painful because I’m in so much emotional pain. I’m realizing people I thought had my back, don’t. (I don’t mean my husband) He is exhausted, his eyes hurt, he has a cold, our boy is being a sassy jerk. He’s almost 13. I said something he didn’t expect, I was right, but my tone was off, as I hadn’t spoken for a while, that happens to me sometimes. I have trouble regulating air, and just, well, sound weird. My son had said something, he snapped at my husband, something like “I can’t take this anymore! I’m going to bed” and my husband was like where does that come from, and I said our son was imitating husband, because husband says that almost every night. He apologized, but it still felt awful.

People don’t hear this stuff because when they talk to me, they don’t ask. They call and tell me their problems. They ask how I’m feeling. I give them a brief description of my pain, because they don’t care, and then I listen. Because I’m Yoda.

I’m whining about this because I don’t think this is unique to me. I think this is fairly common among my zebra friends, and is the reason most of my actual friends are other zebras.

I’m still bummed about my ex-brother-in-law dying. He was a decent guy. I have no one to discuss this with as my husband is not impressed. He can’t fathom a decent guy being brothers with The Weasel. I can’t talk to my ex. Don’t want to open that crate of worms. So, I just sit here. It will pass. He was only seven years older than I am. Five years older than my husband. Cancer. My ex said it was from steroids? I know he played football, but he does get things wrong.

I’m trying to get my son to school, but he’s still so anxious he won’t go unless someone walks him there. I’m so worried for this kid. He made it once this week. My therapist pointed out things could be solved if I could just walk him to school. She’s right. Although, I would probably be working if I could walk. And really, walking him would just be a panacea.

Today should be interesting. I had a glorious nap yesterday. May do it again, today. Makeup could be on the agenda, as I concentrate on it and get out of my head for a while, it’s something I can DO. Unlike colouring, reading, TV, Netflix, jogging, cleaning, writing (for too long) etc…

My husband is talking about coming home to help our son to school as it’s the last day before spring break, and he needs to pick up any home work assignments.

Will definitely be staying away from Facebook much of the day. I’m feeling far too sensitive to venture into those waters. I need to know my limits. Lots of people are closet bullies. I don’t know why they hate closets so much! 😀

Sorry to be such a bitch today, but I needed to vent. Thanks for listening! It’s very much appreciated.

Have a fantastic day, Zebras! 😘

Rare Disease Day

wp-1488290747322.pngFor Rare Disease Day, I have asked many people to take the time to learn about my experience with my illness. I have written this post as if it were a one-time visit. Please indulge me.

Today is Rare Disease Day. On the last day of February every year, we celebrate the rare diseases. Why? Because February contains the rarest day of all, February 29th.

We ask people to wear their jeans in support of people in support of rare disease, because it’s in their genes.

I was diagnosed two years ago with Ehlers-Danlos Hypermobility Type 3 Syndrome. Ehlers-Danlos Syndrome is a genetic condition which means your connective tissue is faulty. Hypermobility is a common feature of Ehlers-Danlos Syndrome, determined by the Beighton scale in patients aged 16 to 35. To learn more about Ehlers-Danlos Syndrome, please visit Ehlers-Danlos.com.

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This is me, Dana, pronounced DAH-nuh.  This is what I look like on an ordinary day.

My Personal History

I was not diagnosed with Ehlers-Danlos syndrome until I was 44 years old. My childhood progressed normally, with a few peculiarities. My mom reports I used to eat every third day or so. This was mirrored in my teens, as I had severe disordered eating, but mostly because my stomach hurt.

My knees used to ache during ballet class in middle school. I was told it was growing pains. I used to walk everywhere. I was a free-range kid. And adult. As a person in my 20s, I worked three jobs, and loved it. But things started to wear on me. As I turned 25, I got one good-paying job. I worked eight hours, I would come home and sleep. Then I would need to sleep on Saturday. Then I would be sleeping most of the weekend. What was wrong with me?

I met my second husband in 1998, and we started talking about a family. We had an ectopic pregnancy in 2000, and a daughter in 2002. In 2003, the pain in my hip and pelvis from symphysis pubis was too much to bear, after three months, I couldn’t return, and was on short-term disability. Then long-term. In 2003, I fell pregnant with our son, and in 2004 our family was complete.

Not Much Has Changed

The only things that have changed since those days is how much more independent my kids have gotten and how much my pain has increased.

Pain

I am in pain every minute of every day. It’s not something I talk about much, because it’s boring, and I have been working with the best doctors in the world on treatments. Someone always has something negative to say or a better idea. The only input I entertain is from fellow pain sufferers who approach with respect. This sounds harsh, but you need to hear some of the stories I can tell!

My knees are without meniscus or cushioning, my hips are so sore they can’t be touched without me screaming in pain. I’m not exaggerating, either. My stomach muscles along the right lower quadrant have been spasming for two weeks. They go into a deep twinge where I can’t move or breathe. I’d scream if I could. It’s like being cut in half with a chainsaw. I get chronic migraines, they are pretty well controlled with Botox injections, but I still get them. My elbows are sore, I have killer carpal tunnel, trying to see a doctor about that. These things mostly keep me around the house and in bed.

Two of the worst ones, are the pubic bone pain, and the Proctalgia Fugax. The pubic bone pain is from the birth of my kids, the ones I’m so lucky to have at all, because my pubic bone separated and never went back together. So it feels like I’ve been kicked all the time. Walking is so incredibly painful. Proctalgia Fugax is a pain in my ass. Literally. This is so embarrassing, but it’s the worst thing ever. It’s when my anal sphincter cramps up. I get no warning, and I am in blinding pain, where I can’t see, think, or breathe. The first time it happened,  I was sleeping, I thought my first husband was violating me. Why he would, I don’t know, that’s just what it felt like.

My stomach pain and constipation and diarrhea are the most inconvenient. My stomach always hurts. I am currently on the FODMAP eating plan, which is gluten and Lactose free, garlic and onion free, and I still have wicked acid reflux. I eat about 800 kcals a day because that’s what my stomach will allow. I’m constantly nauseated. I’m always trying to force food down. There are maybe five things I’m eating right now. My constipation used to be so bad I used to get shots to make me go, shots that would counteract the opioids I am on. It was a horrible nightmare. Now I can go about once a week, but it’s always urgent diarrhea when I do! Fun times! This eating plan has helped with the bloating and gas pains, but I still have actual sharp stomach pain, and my last stomach biopsy last summer said my stomach had an ‘unusual texture’.

Money

Money is always a fun subject because people get pissed off. My husband and I have been damned lucky in our lives and I won’t deny that for a minute. I had a pretty good job when I got sick, so I have disability insurance and he is a genius, so he makes a good living, plus good benefits. We live in Canada, so that is a perk right there. We managed to buy single, detached house right on the edge of downtown Toronto right as the housing boom started. It’s tiny, sad and ready for destruction by the next person who buys it, but…

Some of our expenses include:

  • Medical, prescription marijuana
  • Botox injection fees
  • Therapy and counselling fees
  • Prescriptions not covered by our plans

In Canada, if your medical expenses exceed 4% of your income, I believe, you can write them off on your expenses. Likely we will get some of this money back. Considering we have two children with Aspergers, this medical expense amount can be high.

Medication

I do take pain medication, but I don’t like taking more than I absolutely need to, or I get fuzzy headed. This is why I negotiate with my doctors to keep the dose as low as possible. On the other hand, what is the point, though, if you can’t do anything because you are in too much pain? I’ve been struggling with this lately, as my back pain has been flaring as well as my lower abdomen. If I take the breakthrough medication I’m prescribed, I’m drowsy. If I don’t,  I’m in agony. If I take sleeping pills, I sleep for two days, if I don’t,  I’m awake for two. Lower the dose? I’m at the lowest that works, unfortunately.

Friends

I can’t tell you the number of friends that have come and gone. It’s too painful. I’m like a girl in a rom-com repeating ‘don’t get attached’ every time someone is nice to me. It starts out fun, usually. Especially if I am mobile for a while! I’m having a good couple of weeks! But then it drops off. Always. I do have some friends who have stuck it through. They always have chronic illnesses themselves. The able bodies who do stick around for a while do imbue you with some kind of deficit, however. Whether it be intellectual, social, or your judgement, they will second guess you at something and educate you at every turn. It’s fun.

Family

My family is mostly accepting. My husband is a gem from heaven. I had him running off his feet last night, as he was performing myriad little tasks for me and I finally asked him to stop when it came to cutting my toenails, which I find difficult, since my back hurts. I told him it wasn’t fair for him to do this for me. He responded that he wanted to. I told him that it made me look like a demanding wife. He told me to forget about appearances and be my own woman! 😂 I love him. Even though his parents actively tried to have him leave me when we found out I had chronic pain. Just after the kids were born. They decided I was faking and just didn’t want to wash dishes or cook or do laundry.

Loss

I feel a lot of loss in my life. There is the life I wanted. I had wanted to be a photographer when I grew up. I never had the stamina to study. I wanted more than two children, but my husband was raising them, essentially alone. He couldn’t raise more than two. I wanted to be a gym bunny! I can hardly walk, not even a block, never mind a treadmill. I wanted a big career, a degree, an education. I know at this time, that is futile. This was supposed to be a starter home. I know the over $30,000 in medical bills we average per year has stood in the way of that. Our kids love this house, though, so that’s probably not that big a deal. At any rate, I did not want to spend my life in bed.

The Plus Side

On the plus side, I have met some many wonderful people because of this disease. It’s given me a chance to slow down. I was able to see my kids grow up. My children always know where I am. Teachers know where to reach me. My husband has had the opportunity to be an outstanding father. My kids have learned how to be compassionate caregivers. I did manage to also lose 100 lbs over the past two years, through incredible stomach pain and vomiting. There were days I would lie curled up in a ball and sip water because my stomach would hurt so much. The gastroenterologist hoped the FODMAP eating plan would help, and it has, slightly. I still have the sharp pains, but they aren’t constant anymore.

I hope this has given you some insight into what my life is like. Feel free to ask any questions you may have.

Stay stripey, my zebras and friends! 😘

Edited to add: I kind of thought this went without saying, but we haven’t had sex in ten months, and that isn’t going to change until a doctor finds a way for me to be touched without screaming. I bet you’re jealous now! I miss snuggling. Hugs. Holding hands lasts for five minutes before my hands get too sore. See how easy it is to forget about intimacy?