Three Weeks Later…

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The past three weeks has been filled with trying to get my kids to pass and finish their respective grades, having them prepare for summer school, dealing with the first week of that, ushering in the purchase of new beds, and trying to facilitate the angst though the purchase of all new appliances.

My husband does not like change. He will put off purchasing anything until he absolutely must. The beds, for example.  Our fridge door is being held on with scotch tape. Dishwasher is broken. This must happen. I have no involvement with the kitchen, so it doesn’t bother me. He has things chosen, it now is having things picked up and hooked up, which is a huge chore. He can’t take all this time off and look after me.

The new beds, however,  are fantastic. My neck hurts less. Actually, I hurt more, but it’s not the bed’s fault!

Once again, with a whole new crop of doctors, we have to play around again. When I first started at the pain clinic 11 years ago, they put me on an opioid. That was standard practice. I am still on a bit of that opioid, and I’ve been trying to get off it for three or four years now. My pain doctor would say next appointment. Then that appointment would be in six months because that was first available, there would be 10 pressing matters to discuss,  then it would be… next time.

In the meantime I go on marijuana oil and a marijuana derived pain supplement. Fine. Everything is good. I’m okay as long as I don’t move too much.

My migraine doctor sends me back to my pain doctor saying take me off the opioid. At the same time, the marijuana pain pill is going out of stock. These two make up 62% of my pain relief. My marijuana oil only lasts for 5 hours at a time.

Now, my husband manages my medication.  He takes it and puts it in the weekly boxes for me, so I don’t know how much I stepped down, but before long I was in agony.

Now, those without Ehlers-Danlos Syndrome, and even those with, because everyone is different, right? The way mine works is that if my spine goes out-of-place, all of my muscles immediately tense up so nothing else gets ‘damaged’ until we get help. My stupid, well-meaning body. With my pelvis doing whatever nonsense it’s up to, my whole pelvis muscles tensed up, including my back. We have been trying to medicate them down ever since. Yesterday, we or actually, he gave me a booster: which is a smaller dose of medication set aside for emergencies allowed by the doctor. After that, I was able to sleep from around noon, to my regular time this morning. Previously I had been sleeping in two to four-hour chunks. I feel its much easier to cope. Like I’m able to.

I’m so frustrated with these doctors, though. What were they expecting? I was just supposed to stop everything? That I am actually not in pain and am doing this for fun? Honestly, the way people have been treating me. I might just break.  I don’t want to be on opioids. I don’t want my kids to hear me screaming in pain, either.

My migraine shots are coming up. I’m hoping that will help the face pain. I was talking with the other doctor about the pubic bone pain and he asked if my migraine doctor would be willing to shoot me with botox in the pubic bone.  So that’s a fun conversation I get to have. Although, last time I did compliment her on how smooth her legs were and asked if she waxed or shaved. ☺ I think I was completely giddy with pain relief.

Why do people think they already know what I think? Nobody ever asks what I want.

Someday someone is going to treat me like a person. Scratch that. My Migraine doctor is great. The office staff looks after me very well. It’s mostly the doctors who don’t know what they are doing and people who are rude in general. But those people still don’t see me as a human being.

The way things are as of now, I am completely off the marijuana based pain pill, as it’s out of stock at the moment and I have no choice. I cut down a bit on the opioid, but I need to stay where I am because I am hurting at an 8 or 9. I  am waiting to see the doctor who is supposed to be seeing me for this. I had an appointment last week, but was too sick. Imagine. Still taking the marijuana oil. It’s helping me through. I do have other medications, but those are the main ones for pain.

The physiotherapist is ready for me. My last two physical therapy experiences were:

1. Lose the cane and join a gym. For this, $125

2. A guy who couldn’t figure out why my legs were so unresponsive. Duh, I was full of Botox. I can’t be smarter than these people. I can’t.

Looking forward to this. 🙄

I will let you know if anything changes. First I want to walk without blacking out. Then physio.

🦓

Family Time

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Yesterday was Mother’s day, and I woke up to my alarm going off at 9:00. I usually sleep until 10 on Sundays, but have been enjoying getting up slightly earlier lately. Plus, my makeup look didn’t work out on Saturday, I wanted to try to squeeze in two looks as well.

I texted the kids, and was greeted with my usual Sunday fare of chocolate chip pancakes and coffee. My son carried those, and my daughter held a huge bag from Pandora! First to come from the bag was a gorgeous fuschia matte lipstick from Urban Decay called Menace that my son picked out. Apparently, he sat in the store with my photo and the lipstick samples and tried to match them. He will be 13 next month. He’s quite diligent. He was deciding among Menace, Alpha and EZ. He told me, even though I’m an Alpha, the colour wasn’t quite right. And he doesn’t think I’m EZ. Menace didn’t fit, but the colour is gorgeous!

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The cigarette holder in the middle is actually the Finger Brush. 

My daughter, 15, gave me a lovely glass box engraved with ‘Always my Mother, forever my friend’. So sweet. My husband gave me a bangle from Pandora, and of course we have the Finger Brush from Saturday. It’s called a finger brush because it’s supposed to mimic the action of your finger, in brush form.

Yesterday worked out well. I pottered and put on makeup, ND had very little pain and pressure. I was able to do two looks, no problem. Well, small problem. I was so tired by the end. I had to fight through.

Today I was battered, but I’ve managed. I played makeup today, I worked on an 80s look today that was fun. I was so tired and sore by the end. I needed a bath, too. I was going to bail, but I snuck up on myself. I almost dozed off inthe tub.  I was washing fast, before I fell asleep.

I’m fighting now to stay awake. I might get an hour before dinner. My back is killing me.  Gonna do it!

Hope your Mother’s day was great, Zebras! 😘

 

Return of the Porcupine

dk6cthn9wog2kMy husband and I have been referring to the pain in my lower right quadrant of the abdomen as my ‘porcupine’ for a while now. It feels like a giant porcupine is sitting there, as there is weight, and it doesn’t hurt unless you move. Then you have a stabbing, sharp pain.

My pubic bone is also back to aching. I’m tired. But I still feel pretty good. Better than I usually do. Because I’m usually aching all over, too. So, today I’m going to rest and see if I can’t prolong this winning streak! What a lovely surprise!

Yesterday I became curious when I ate lunch and became bloated and gassy again! A glance at the ingredients on the crackers reveals the suspect! Beet fibre! I’m allergic to beets! My husband knows this! I’m skipping them today to see if this helps.

My daughter is back at school, she seems better, still tired, though. My son is home again, still dealing with anxiety, I think. He has started testing for Autism, and is on the spectrum for sure. He is so precious, I worry. I know he has stomach issues, as autistic individuals often do, but with pain and sprains, I think EDS? I can’t help it.

My husband’s eyes turned red with irritation again. This time the eye doctor changed the glaucoma medication. We wait with bated breath.

I’ve had a blast playing makeup the past couple of days. I want to again today, but I should probably nap instead. I’m so torn!

My cannabis doctor just called and moved my appointment from the morning to the afternoon. They are always moving my appointment around. It is so irritating! My husband takes time off work so he can take me there. Then they change at the last-minute. If I could swan in anytime, I wouldn’t need the medication. Luckily, my husband took the day off this time instead of the morning. Only two people ahead of me, too. Last time I had to wait an hour and a half. It hurt. I was in tears. My old doctor retired to go into addiction recovery. Maybe now I will get someone who will stop trying to get me to cut down. I want this to replace my opioids, not the other way around. Plus, this guy was trying to shame me over my use! Having never used a vape machine before, sorry sir, there was a learning curve. I don’t exactly hang around with anyone who can show me. The stuff I threw out for the first three months was still green.

Anyway, I’m enjoying the heck out of myself. I’m puttering around, getting a few things done, but that nap will be coming up soon. I might even get a read of my book! I don’t know!

I hope you enjoy a respite as well, 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? 

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My Kid and Me

I can’t believe my daughter is fifteen today! It’s shocking to me. It seems like only yesterday she was an actual infant. Or I was in labour for one of my 96 hours. They were trying to keep her in until she reached her full term state of 37 weeks, but since she was 7lbs 11 oz, I think she was OK.  Remember, I’m 5’8″ and her Dad is 6’5″, albeit skinny, so she comes by it honestly.

Pregnancy was tough. I had lots of aches and pains. I was exhausted. I hadn’t been diagnosed with Ehlers-Danlos syndrome yet, but had severe endometriosis. I had constant ligament pain and nausea. I lost 30 lbs in my first trimester from vomiting. (I had it to lose) I came home every night, had apple juice and cheetos and fell asleep. I craved nachos and orange juice (not together) so much, and I hate orange juice!

I had to go on bed rest for the last two months because I was suffering from symphysis pubis. I tried chiropractic, as they were the only ones offering solutions, but I had no idea about EDSers and chiropractic compatibility. He did get me into orthotics, which was amazing.

During this time, husband and I also got married! We had expected to have trouble conceiving, as doctors predicted, but nope! The plan was to try for six months and then start IVF right after the wedding, but that turned out to be unnecessary.

I started mini contractions on February 4th, every 20 minutes or so. Nothing major. By midday on the 5th we were in the hospital. 5 minutes apart. They needed to stop these contractions so daughter could stay in until 37 weeks or the 7th. So contractions were on and off until the 6th. Then they took me off the medications and let me go home.

The next day, Thursday the 7th, around 9 am, I was back with 5 minute apart contractions. They had me on the monitors for a while, but I wasn’t productive, so they induced me. I started pushing around 5 pm, and for about five hours. No luck. She was stuck. My pelvis, it seems, is quite small. So c-section it is. But I had to wait, because some lady with twins was in there before me. I was unimpressed and started screaming. And puking. The nurses told me to be quiet or I’d scare the other ladies. I said they should be scared! 😂 I calmed down after a bit and we moved to the operating theatre.

They tried to suck my little girl out with a vacuum, no luck. Forceps, no luck. So it was cutting time. I couldn’t feel a thing. My husband, super tall, is by my side, and he can see over the theatre drape. He suddenly turns white. I feel yanking. I ask what’s going on. He says he’ll tell me later. Apparently the doctor had my daughter by the ankles, was standing on the operating table, straddling my body, and yanking her out. Maybe this is why her legs are so long.

I spent a few days in hospital learning to breastfeed. I remember leaving her with my husband for the first time and crying as I went to the hospital lobby to get a magazine. It’s not that I didn’t trust him, but I didn’t trust anyone with my precious bundle. I laughed when he said he felt the same about me!

So, here she is, fifteen. I can’t help but think of all the stuff I got into at fifteen and think she’s far more straightened up than I was. Sensible, smart, caring. I am so proud to be her mother. She is my glory! One of my set of pride and joy. Love this kid.

Pain Flare-ups

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By yesterday afternoon I was in quite a lot of pain. I’m not sure what the trigger was. It wasn’t one of the usual ones, like over exertion, or injury, but the weather is kind of strange with rain and snow or sleet, and warm then cold temperatures, and one of the treatments I get is starting to wear off. I haven’t been sleeping all that well, unusual for me, another major blessing! I’m certain all play a part.

When I have a pain flare-up, the most affected is always my back. My back is in spasm, and it hurts to walk or stand for any length of time. It hurts even when lying down. My abdominal muscles are also in pain, likely from keeping them stiff, keeping my back from moving.  My right hip is always worse than my left. It aches, crying for attention.  My knees are fairly quiet until I move. Then they pop and snap into place, and ache for a while. When I walk they are a little wobbly. I need to go slowly to make sure they are going to take my weight before I step onto that foot. If not, I tumble. My elbows are sore, right more than left. Wrists, right more than left, fingers on my right hand… but I’m going to rest in a bit.

What also hurts is my pubic bone. This started in pregnancy with my daughter. I had a mild case of symphysis pubis, hardly measurable, but oh my goodness, is the pain real! I had to go on bed rest. My daughter is 15 in 3 weeks and I still have days where I can barely walk. I feel as I’ve been kicked by someone wearing steel-toed boots. Still. A knee pillow helps. Also helps align my back and hips for better rest.

I do not have a migraine, and my neck does not hurt, so I will count those two blessings on the score! side.

On days like this I feel very nauseated. I try to stay off of social media as much as possible because I don’t often communicate my thoughts the way I want to, and they come out jumbled. I’m very afraid of inadvertently hurting someone. I tend to cry randomly. I’m very sensitive. I try to be extra good to myself. Sometimes these days feel like they will never pass, and you start to worry that things will never get better, but they always do. Eventually.

Napping, reading, if I am able (because sometimes I have no concentration at all), trying to keep my nutrition up, pampering with face masks, and ensuring I remember my medications, as well as scouring Netflix for good documentaries are usually how I spend these days. I’m almost always low energy, or medicated to the point I’m tired. Unfortunately.

I just need to keep on swimming!