16 Years!

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It’s hard to believe, but we were married 16 years ago today! We still seem to like each other! 🤣 I know I like him, anyway!

He really is everything to me. He is everything fun in my life. We met on Halloween, 19 years ago. I feel both like I’ve known him forever, and I met him yesterday. Do you know what it’s like when you meet someone destined to be your family? He is my family. We do have two babies. Well, I was pregnant with one of those babies when we got married. I was told I couldn’t conceive, and we should start trying, so we could begin IVF right after the wedding…

Tonight will be a quiet night at home. He is exhausted, I am essentially bedridden, due to my chronic illness. That’s okay, we are homebodies. Restaurants are out, he has potentially fatal allergies, as do I. I have gastroparesis and the FODMAP diet makes eating out complicated.

He is exhausted from work, and I’m pretty hopped up on drugs due to my neck and head hurting so much. Although, Monday I’m going for migraine BOTOX injections. I am to talk to this doc about a neurologist. I’m starting to have fantasies about kidnapping a neurologist, forcing them to treat me, so something needs to happen soon.

Have a great evening!

So. Much. Pain

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My head and neck are absolutely killing me today. My face hurts. My joints hurt. My elbows and wrists hurt. No amount of medication or rub on medication has been working. I’ve spent the day lying in the dark watching Netflix. My daughter had trouble attending school today (that’s a whole other thing) but she came and sat with me while we watched some bad horror for a bit this morning. We don’t usually, as I don’t want her to be associating reward with staying home.

I’m not certain on next steps. I may have to just go to the hospital. This pain is wearing me down. I’m eating more chocolate than usual, which I often do when I want to be sleeping. It helps keep me awake. I want to stop, but I may sleep full time. I see a doctor on Monday for migraine BOTOX. Can I coax a few needles to the back of my head? I’m also to ask about a neurologist.

Still seems like a long time right now.

💜

The Migraine Dance

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I don’t really know what is going on with the back of my head, but it might be a migraine thing, so let’s call it an offshoot of my migraines for now.

I’m learning to dance with them. They are leading. I need to lie down when it’s time to lie down. Sleep when it’s time to sleep. It’s rather like having a newborn in the house, only I’m the newborn! Although I do like the idea of rebirthing myself. That may be too deep for my brain at the moment.

This does mean I’m keeping irregular hours. I did see my

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If we ever have competitive napping, though… I nap hard!

husband for a few minutes this evening, as I woke up to use the washroom as he was going to sleep. So much for my 4 hour nap. More like 10. I will sleep more. It’s 1 am now. By 2 I should be ready again. I need 18 hours every 2nd day.

I’m almost ready to plant myself at the ER.

My neck and back cracked loudly today, but the pain ended up intensifying in my neck. My back feels better. My toe feels like it’s healing, too.

I am supposed to be getting the Botox shots for migraine on the 24th of October, I think. The clinic can at least do that. I’m hoping that helps, because it did help a bit in June. I do tend to sleep more before my shots, as the pain gets worse and I’m 2 months without now, so I guess it isn’t abnormal for me, but geez, I would like to see my family.

Five minutes should be enough. 🤣 they’re teens!

I know this sounds like exactly the opposite of what I just said, but it isn’t. Those times I am awake, I am pushing myself just a bit to accomplish things. Blogging, putting on makeup, organizing this or that. At least when I’m sleeping I don’t feel like I’m not accomplishing anything, either. I’m trying to be awake between 6 am and noon, at least. It seems to be my best time, and I am happy I’m getting a few small things done.

Life. Still good. Bitchy as hell, but I have some great companions! 😁

The Appointment

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I haven’t posted in a bit because my head and neck pain has been really bad. I have been trying to cope as best I can with frequent resting and making sure I take my medication on time. The pain has still been so overwhelming, the only thing I could really do was sleep. So I was sleeping up to 18 hours per day. I had also developed this weird swelling of my mouth, but I think we’ve figured that out. I didn’t have it last night, so cleaning my mouth guard seemed to help.

I was really hanging on for my doctor appointment.

Husband and I arrived well in time for our 8 am time. We waited a few minutes and were called in. He asked what we were there for, and I began describing my symptoms. He stopped me and asked if we were dealing with this before with the previous doctor. No… He referred us to you, the neurologist. Oh, but he’s not a neurologist! He’s an anaestheseologist! This appointment is to ensure I have enough medication!

My husband spoke for a while after that while I tried to compose myself. All I know for certain is we have more of the magic cream that makes my neck feel awesome for ten seconds. It’s actually not bad.

There is no neurologist on staff, but they are hiring one. So he will refer me. It will just take a long time. I also demanded a referral to a gastroenterologist, which he tried to dance away from, but I insisted. Sorry if you have to do work, doc.

I saw my GYN on Tuesday, much better appointment. She feels my period was a one-off. No cysts or anomalies on the ultrasound. Did a full exam, while uncomfortable, we determined most of my pain was likely gastrointestinal, hence the gastroenterologist. I have a very sharp pain on my lower right quadrant that is horrific. She also gave me a prescription for visanne, should things get out of hand.

My husband was brilliant and rented a wheelchair for these excursions. It made things so much easier! I didn’t feel like I was dragging myself down the hall. We have a prescription to buy one. We should get on that.

I’m not entirely certain what to do now. I can’t live like this for 6 months until they sort things out. I will get in touch with the EDS clinic and see what they have at that hospital.  My GP will refer, he just doesn’t know to whom.

The other option is ER with every flare. Not good options.

Oh, and I will be getting my migraine shots, at least. They are set up for October 24, with a doctor who is amazing, so that’s positive. He doesn’t do the rest of the body, though, and a shot in my pubic bone would go a long way to less pain. My back… I could probably do it myself after 12 years! Ha ha!

Ok, getting tired.

I’ve bought a bunch of cute things to cheer me up lately. I hope I have the spoons to show you soon! 😄

Hugs to all.

💜

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! 😘

Some Thoughts Before My Head Implodes

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I do have some good news! The EDS clinic called yesterday. They wanted my GP’s information so he can be contacted for more information. At least they’ve heard of me! My husband called back, as I didn’t get the call.

My head wasn’t as bad this morning when I woke up, but the pain progressed as time has. It’s been two and a half hours and I can feel it settling in nicely. My husband did get a response from my doctor, and apparently whoever answered the call said there is no way it could be chiari malformation because it would have shown up on my barium swallow (?) I really wish he hadn’t said anything about my fears. I also have a skull fracture at the back of my head that may be affecting things. It’s been raining here all week, is sunny today, and is supposed to rain again tomorrow to Sunday. I thought that had something to do with it, but I’m hurting again today, so that doesn’t seem right.

I thought I’d blog early before the emotions and pain get too tangled.

I know I sound like an asshole much of the time. You’re getting real, unvarnished here. What I usually hide. What I find so challenging is, I should be falling back on the friendships I made years ago. But I didn’t make those. I’ve explained my weird adulthood before. Moving across the country, my ex-husband alienating any friends I did have, working too hard and making poor friend choices led to those relationships falling apart. Finding a group as an adult and being drummed out because I was accused of being a drug abuser (I wasn’t, someone decided an increased prescription dose = me freely taking as many pills as I want. I don’t talk quite as much as I used to, but that was a side effect of that stupid medication as well.) A couple of long – term friends, but they are spoonie, too. We rarely see each other or even talk. But they are really good people.

Some of the friends I did have don’t know what to do with me now that I can’t go out. They don’t even invite me over when they have movie nights at home. I could do those. I don’t even hear from them. Not even casual emails. It’s as if I ceased to exist.

My Mom tries so hard, bless her, but I need a Mom.

My husband is so busy looking after me, I rarely see him.

I really try to be a fun, happy person most of the time. I wonder if these episodes are just too intense for some people. It’s just right now I need friends most of all, just knowing someone cares means a lot to me. I’m probably looking in the wrong place or asking for the wrong things.

I just find so many are suspicious or angry or defensive, you cannot approach anyone. It’s harsh out there, and in all honesty, I’m getting tired. I’m getting tired of having my head bitten off when I ask for help. I’m tired of having it bitten off when I offer help.

A friend of mine, a friend I went to elementary school with, is a nurse. She is one of the most caring people I know. She wrote on her Facebook wall “I must be the first person in the history of the world to cancel a doctor appointment because of not feeling well.” Now, I don’t demand everyone think about me before they post something, but that hurt, it was so tone deaf and out of character. I mean, I’ll live, but…

Okay, the head is hurting time to vape. Nausea is rising.

Have a great day, Zebras! 😘

The Fog Lifts

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I have no idea what this gif is about, but I thought it was adorable.

I woke up this morning to more energy. I had to be careful to not go overboard and try to do everything, but I did get an impressive amount done, including a look for tomorrow’s Instagram, a Facebook live, which I’ve never done before, that was fun, and some organization stuff I wanted to do. I chatted on Facebook for a bit, nice to talk to people. I’m feeling more comfortable, not as picked at, I must be feeling better.

I called my Mom, to tell her about a nail polish I’d found by Smith and Cult called Birdie Num Num. If you’ve seen the movie The Party starring Peter Sellers, you’ll get the reference. I laughed so hard! I love that movie! It’s a family favorite, a good memory, as my Dad was well-ish at the time. He could at least laugh. It was before depression really took his personality.  I’ve so overspent this month Mom offered to buy it for me! So sweet! The brand doesn’t ship here, it’s tough to get, but I found it, so…yay!

I did some ambien shopping last night. I get dozy and shop and don’t remember in the morning. It does come back to me. My husband was complicit, I remember him helping. I bought a bunch of cheap eyelashes to test the quality. They should be fun to play with. I spent about $35. Then there was early in the day when I overspent at Beautylish. I was trying to buy the Jeffree Star Manny/ MUA collaboration, but I wasn’t sure what the total would be, and I had to be over $100 for expedited shipping. However, my son had a crisis as I was trying to put everything into my cart, and I forgot to take extra things out, so I bought more than I planned. We will survive, I just can’t get away with this excuse every month. 😃

Other than that, it’s been a good day. I took my migraines medicine finally. I think that was smart. I am having incredible neck pain, and I think it may have something to do with the bralettes I’ve been wearing this week. I had husband pick up a couple of sports bras, they are slightly big so they don’t irritate my stomach, but my neck aches. I’m very large busted. My breasts have been sore, so I want them controlled, but anything I wear hurts my neck. I’m at a loss. Ace bandage? 😃 I will bring this forward at the EDS clinic.

I’m glad I don’t feel quite as bone-weary as I did yesterday. That’s an absolutely frightening feeling.

Have a great evening, Zebra loves! 😘