Healing Sleep

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My husband took yesterday and today off to take me to appointments.

I had to go to the doctor on Tuesday, as I didn’t sleep at all on Monday because my tongue hurt too much. It feels like I burned it on hot coffee now, but there were blisters before. Ugh.

Thursday I couldn’t stand I was too weak. I have been pretty much sleeping on and off ever since.

It is pouring rain and thunderstorms, and the dentist is this morning. Let’s see if I can do it.

Cheers!

Remember Me?

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Hey everyone! I’ve spent the last two weeks freaking out over this past weekend’s beauty convention! It went over very well, and I’m hoping to soon have a cross-post up between my two blogs about my experience.

I was very nervous about this weekend because I purchased the tickets for me and three friends in March when I felt fairly well. With the head and neck pain I’ve been having, I wasn’t certain I could endure the entire weekend.

Add to this, I had my BOTOX injections and broke a crown on my tooth and had to have dental work done. Ugh.

Oh, I missed this story, so on the day of my BOTOX injections, there is a volunteer in who isn’t the usual. She comes in the lobby and calls for Diana. I ignore her, that not being my name. She then calls Diana with my last name. I figure it out. I stagger over, followed by my husband. I apologize for not answering to the wrong name before, being the Canadian that I am, and educate her on the correct pronunciation of my name. DAH-nuh to rhyme with banana. She gets all put out. She goes to the file and starts whining “Well, it’s just that we have four names here for you!” My husband goes over and asks what they are. She’s referring to my first, middle, maiden, and last. The only one I don’t use is my middle. And there’s a short form of my first name I use. So she lightens up a bit.  Then she comes back and want to know if she needs to fill all the serum, if we use all six vials. I told her yes. As we’ve been doing this for three years now? Maybe two and a half. She then says, I don’t know, it’s kind of a lot… And then looks to my husband for validation. 😠 She comes back after with another administrator, and thusly begins calling me Dayna for a good five minutes. I won’t even mention her mocking my husband when he went to get me up when he thought the doctor was ready for me but he wasn’t. I will send a note, though, to patient relations. Yikes!

Back to the convention, so after my BOTOX, I had my tooth fixed, went home, rested up and was really anxiety and pain ridden, and I couldn’t figure out why. I was angsty and stressed and such a mess. But then, as soon as the event was over, as my friend got in her car and drove away….

My throat began to hurt….my tongue began to swell…my lymph nodes are swollen and sore. I couldn’t sleep my tongue hurt so much last night. I’m glad it waited, that was kind. I do need to have my husband book off work to take me to the doctor. I can’t go alone. I get really upset and stressed when I’m sick. Sometimes even before I know I’m sick. It started in my 30s. It’s almost as if I am afraid to be vulnerable. I remember one day being so ill I could hardly walk I had such a cold, but I had decided I had missed four days of work and that was it, I was going in. It didn’t matter it was 8:30 at night, I was needed! My husband talked some sense into me, but I get so irrational.

A couple of conclusions: last time I went out socially was last August. This isn’t acceptable. I need to get out more, as does our daughter, so we do not have this much anxiety.

The world certainly treats you differently when you are thin..ner. I’m not quite thin, but I’m thinner. I’m about 60 less than last year? Wow. Last year someone asked if I was my friends’ mother. That’s the one who spoke to me. This year? Compliments and chats and nobody speaking to my carer (pusher? 😁) first…well, mostly…. but that’s a story for later!

There were actually moments when I didn’t notice my pain. I feel miles better today, spiritually, anyway. My mouth hurts. I’m thinking strep. All that turning of my neck may have worked out some kinks. Now, I’m far from sprinting a race. Much of this is because of a good medication balance. I did have two pretty scary incidents where my knees just buckled under me. My friend who is a nurse thought that was pretty cool, I think, except one was on stairs. It’s that with no meniscus, it feels like one bone goes one way and the other, well… I also had my fingers go out yuck. But in the grand scheme, I will take it.

I will try to get that post about my experience together, and I will let you know!

😘

Oh! No! More Fuckery!

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Remember how I said I clench my jaw when in pain? Ha! Ha! I woke up yesterday with a chunk missing from one of my crowns. It hurts like hell when I eat and misfire.

Hubby called my dentist right away (he’s on call) and we giphy9decided I could hang in until Tuesday after my shots. Combination of convenience of everyone, me getting some lidocaine in my jaw before lying there with my mouth open for hours, and the probability of me getting up the stairs. The dentist asked me if I needed pain relief. I laughed. He called me back in the afternoon to check up on me, he wanted to make certain I could make it to Tuesday, still. Also his best tech is on then. It makes things go quickly. See why I’m so reluctant to leave? He also mentioned it is a medium sized cavern, now that he’d checked the records. It’s work we had done about 10 years ago. Ten years? With my grinding? Woah.

I’m also being fitted for a mouth guard. I asked for two, fully intending to pay, because it’s worth the number of times I drop it and can’t reach it and then can’t nap until my husband gets home, or drop it and can’t rinse it. My dentist was all excited about this new tougher guard, so my husband will have to try to explain. I don’t think he even heard me.

 

Today is my son’s 13th birthday! I am the mother of teenagers now! Woah, I’m old. Ha ha! When I was young, I never imagined myself this old. I just didn’t! So weird…

I can’t wait for cake!

 

Have a wonderful day Zebras! 😘

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!

 

 

 

 

Dark Days

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I have never felt so dark as I have the past few days. The pain just feels never-ending. I don’t feel like there are any bright spots anymore. The tears keep falling. I know this is a temporary state, but damn, it’s no fun to go through.

I try so hard to be stoic all the time. I try to pretend I have this. It’s no problem for me to lie in bed all day every day and play on the computer. But it’s a huge problem. People don’t realize, I think, that when everyone on Facebook decides to have a shitty day, I don’t get to go outside and find other people to talk to. I’m stuck with what I’ve got.

I’m trying not to turn this into an ‘everybody is being mean to me’ because that is certainly not the case. I know I’m very sensitive right now, probably not safe for human consumption, and feeling very left behind, and I have no way of communicating this without feeling like I’m whining, because I’m in too much pain to do anything but whine.

I feel like my soul is being slowly ripped from my body. I just want this to end.

I was thinking yesterday, I would love to just have a day off. To just hand over my pain for a day. But whom would I burden with that? Oh, you know my first choice. Someone who needs to make decisions on health care reform. But is there someone else who needs to know what this is like? I couldn’t even do this to my ex-husband. I don’t particularly hate him, but sometimes, you know, I think he was kind of clueless.

My good friend is chronically ill. She’s lovely. She always says this thing, though, that interests me. When she’s talking about her pain she says, “but it’s nothing as bad as yours.”. She’s not the only one who does this. It’s so interesting to me because to me, pain is so individual. It may be that I’m a big wimp 😀. It’s almost not how much pain hurts, but how much it disables you.

My husband just interrupted me for a conversation. He is home today because he had a sleep study done last night. When he originally booked it, he thought it was the Family Day long weekend. I’m vaping as I blog, so I’m feeling better as I go. I’ve spilled my guts to him, and we’ve decided to cancel my dentist appointment for this afternoon. They are so darn good to me. They allow me to cancel and fit me in when they can. The weather is terrible. Snow and ice. I can’t get over the snow banks on a good day, but the ice? We have to try again. I really need a new bite guard.

So, my husband thinks I should medicate myself as much as I am allowed. Then take a warm bath. He will ensure I’m okay, and I don’t stop breathing. I mean, I’m not taking the same things as Michelle McNamara, but Patton Oswalt pulls at the heartstrings, ya know?

Our neighbour’s young daughter knocked on the door this morning to say ‘hi’. She informed my husband her father was at work and her mummy was at work. My husband told her he was at work (liar!) because sometimes they let him work from home, and our children were at school because it was Monday. Her eyes got big and expression was surprised. “Monday!” She repeated. He heard her grandmother start to frantically start to call for her two doors down, “Grandma, I’m visiting my friends!” She called back as she scrambled down the stairs.

Husband came up and began to tell me the story. We heard frantic banging against the door, as if someone were throwing their whole body against it. “Goodbye!” She called as he opened the door, “Grandma’s taking me to school!” As she flew down the steps and down the walk.

He also reminded me that it’s February and Valentine’s day is coming up. This may explain the rash of sudden expressions of love (or whatever) and some of the grouchiness. I can totally get that! Whether it’s being just sick of winter in general, or hating Valentine’s day, whether in or out of a relationship, February is a tough month.

Sometimes it is straight out hostility. It’s so funny, too, what people perceive about your life. I know I’ve lost at least one close friendship over jealousy of my relationship. It is incredibly sad, because I just figured it out recently. If this woman could only see my life now! I guess it seems great on paper, doting husband, two kids (who happen to be awesome), good drugs, lie around all day, play with makeup… but where does the horrible isolation fit in? The feeling everything you say is completely stupid and pitied? The aching in every part of your body every day, including your pubic bone? Doctors constantly questioning your mental state…are you depressed? You seem depressed. Of course I’m depressed you fucking nitwit! But this is temporary. This dark mood. They come and go.

Stay in the light, my mutant collagen cousins! 😘

Missing Out

pbnvdadnhoya4 Today I had to miss my dentist appointment.  I haven’t been to the dentist in almost a year, and I really need to have my teeth cleaned. Plus I need to have a new bite guard. I’m terrible with grinding my teeth. But, I am just aching too much, and I can’t do the flight and a half of stairs to the office. When I first called to make my initial appointment, they told me they were accessible. They are so good, though. And they do wonderful things like hitch me on to my husband’s and son’s appointments, so if I need to cancel it isn’t a big deal. The dentist also knew about EDS, and has knowledge of current pain management techniques. He’s so good!

My wrist and elbow have been really been bothering me lately, and I finally put on my arm brace overnight. The big, heavy one made by the physiotherapist. The one that goes from fingertip to just before my elbow, and I feel so much better today! Some days are smarter than others. But sleeping in all that junk is tough. I don’t know if I could sleep in both of them.

Husband has some vacation time to use up, so he took today off. He usually uses his time to take us to appointments, so he was surprised by extra time. I feel awful that I slept all day. Poor guy was so bored! It’s good for him, though.

My marijuana doctor has decided to move to another area of care, so I have to start with another. I’m nervous. I can stay with the practice, but it is somewhat inconvenient to get to, and it has an air of being for-profit. But can we get away from that? I see my Pain Management doctor tomorrow, so we need to talk. Also, husband has mentioned that if I say Botox isn’t working in my back, they may discontinue it altogether. This would be disastrous. Right now I consider myself to be coming off the Botox. I can barely move. When I have some in me, I get at least 6 or 7 pretty good weeks. I’m not out dancing, but I can occasionally do stuff, more so in summer than winter. But to lose it would be devastating.

I will need to tread carefully.