The Doctor Appointment: or I’m the Girl with the Most Cake

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I attended the doctor appointment of intrigue on Monday, and found out SO MUCH INFORMATION! I have needed two days to recover. Also, my nerve blocks are wearing off, so please bear with me, my face hurts.

Well, it seems the lovely doctor who did my nerve blocks at the other hospital is now not able to be working at both hospitals. This may have contributed to communication breakdown. But it also means she had no reason to see me or take me on as her patient. When I sent her that desperate email, I had no idea, and she could have said, sorry, don’t work there. However, she took me on as her patient at the other hospital. I am so very thankful.

Now, the doctors at the clinic wanted to know how much I know, which was nothing.

The very first miracle was having the admin at the pain clinic bumping me up in the schedule so I could see the migraine doctor in the first place. I think she only saw a few people, and my husband was very nice to her, as he just is, and she knew how much pain I was in, so she got us in right away. I don’t think she brought many patients with her back to her clinic.

Now, back to the appointment. Remember the scary, nasty woman who worked there? She was in charge of this appointment. She was a ray of sunshine. I believe it was finally having job-related duties. Anyway, we had a lovely conversation. Originally, I was sent back to this clinic to get off of an inappropriate medication. Then she asked some questions. Who has been following up with me? No one. What are your other issues? Well, I spoke about my knees, arthritis, we are going to the arthritis society, it’s not too bad.

My pubic bone. I spoke about being laughed at and dismissed by the EDS Clinic. She looked concerned. I told her that it might not be an EDS issue, but it still hurts, and even if he says it shouldn’t it still does. Then it clicked. I told her it might be an injury from my daughter’s birth. They tried to keep her in until she was 37 weeks, but she was an oz short of 8 lbs. The doctor had to stand on the table during my c-sections and rip her out of my pelvis. The only reason I know is because my husband is 6’5″ and could see over the curtain. He turned white (er). He didn’t tell me until later. She looked at me in horror.

I told her about my back pain, which she blamed on inactivity, of course, but my husband jumped in and mentioned it was our original reason for visiting the pain clinic, and how I was improving for so long.

When I thought about it though, doesn’t it make sense that the back pain is the other side of the pelvic pain? Duh. I really am ashamed it took me 16 years to figure this out. Not to mention I was in labour for 2 days with my son slamming against my pubic bone. They gave me an epidural for the pain right away. Then when they looked at the ultrasound realized he wasn’t going to fit. I am 5’8″. I’m not some little, slight, thing. Oooh, fun fact. While I was still under the illusion of VBAC I received advice from Michelle Duggar, who was on kid number 8 or 9 at the time.

When the doctor came in he told me he had given me one round of Botox injections. I agreed. We then went through everything again… at which point I corrected him and said: Dr, you gave me two sets of Botox, and a guided nerve block under anaesthesia. He was not like being corrected, but was kind of… okay! Knows her stuff!

At the end of the meeting, he was unimpressed no one was following me. We were expecting to see an appointment at the EDS pain clinic in September. So he booked me for a full exam in July.

Surprise! We have an appointment with the EDS Pain Clinic mid – June! So we are going to let the other pain clinic know, just for transparency, and see what they can offer. Another Miracle!

It was so amazing, I called my Mom as soon as I could, as my spoons came back, on Monday. We are so different! I was marvelling at the miracles and my luck, my Mom wanted to know how everything got so screwed up! She said everything should be perfect! Well, yes. It has taken me so long to get over that expectation. Sometimes miracles happen when things are messiest. I can’t demand perfection when I live in chaos. My daughter has perfectionist tendencies and it nearly cripples her from doing anything. It’s painful to watch.

Embrace your imperfections. They are some of your most endearing qualities!

I am still working with the Cefaly! I will give you an update in a couple of days!

In the Blink of an Eye…

It looks like this didn’t publish when I tried to publish. Sorry. Let’s attempt it now, and I am working on another post…

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My beloved Grandmother died on May 7th. It was as unexpected as you can get for someone who is 96 years old (97 In August) and isn’t terribly ill. She was an amazing lady. She was my inspiration and role model in all things. She was so tough. She never let anything slow her down.

It was my utter frustration in not being able to attend her funeral, it being in Winnipeg, that led me to send a rather nasty (Canadian nasty) note to my doctor about me having to live in darkness while my life passes me by. Well, my doctor had me in her office and was sticking needles in my face within two days.

It seems she was sending me messages through the clinic, which I was not receiving, of course, and I was doing the same. Now that we are in touch, we can bypass the stupid place and get to business.

As for the MRI, my brain is fine, no leaking, no shifting, I seem to have good old fashioned chronic migraine. The doctor has a treatment plan, a bunch of it is old stuff from the last clinic, getting me off an old medication, Botox regularly. She feels I can probably feel good some of the time.

I was doing really well before, when my treatment was regular, so we shall see.

Sitting up is so amazing, I can’t even begin to tell you.

Why do people insist on wearing perfume to a headache clinic? Why?

Love

I’m a Badass!

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I survived my Botox injections yesterday. My regular doctor did them and started with the migraine portion and went down my neck and down my spine and back, to my bottom, and back up thru the other side. I then flip over and we start on the front. When he reaches my abdomen is usually when my screaming starts. It hurts so much.  After, I calm down fairly easily.

My husband is always looking after me. He’s so caring.

After, we spoke with the doctor.  Cleared some things up. We made another follow-up appointment. For October.  Right before our 16th wedding anniversary.

We headed to the car, well, the lobby, hubby picked me up. The dentist was ready for me, so we headed straight there. Skipped lunch. Had my crown repaired. X-rays, no cavities! In fact, no extra work to be done. Mold for mouth guards (2) because if I drop one, and it’s inaccessible, I can’t go to sleep until someone is home to rescue me. And with my hands becoming fumblier and fumblier, it just makes sense.

I had to crawl up the stairs to bed, but I made it.

I need to return on the 30th June to fit the mouth guards and finish the cleaning he started. What a treat!

That’s the short version. I will get you the long version soon, as it’s pretty funny, but I’m really tired and the back of my head and neck are killing me!

Be well, my Zebras! 😘

Exhaustion Takes Over

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I have been too tired for words lately. I feel like the exhaustion from my Botox treatments have passed, but I am the kind of tired from not sitting around doing nothing long enough or not sleeping well enough. My CPAP mask has been acting up, I just realized the other night I was spending an awful lot of time fiddling with it while I was supposed to be sleeping. My husband ordered a new one and it arrived today.

This month has been lousy with new makeup releases. I’ve been playing with makeup for so many days! My hands are sore, and I took  some photos today and noticed my eye was drooping in the photo, I was so tired. Yesterday, most of my photos were lousy. It’s hard to look good in a photo when you’re tired and sore. It’s possible, but, it doesn’t happen often.

I think the best thing is for me to put myself on vacation until Monday, April 24. If I feel inspired, I may post, but I’m hoping to sleep, rest my hands and wash my makeup brushes and rejuvenate. I have posts brewing in my head, but they will wait.

I’m getting jumpy. I should go.

Have a good weekend, my Zebra friends! 😘

The Sleep Monster!

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The sleep monster has had me for the past couple of days. I start nodding off around eleven am, I get up around six am, so five hours isn’t bad… I decide to lie down for an hour or two and I end up sleeping for six or seven hours. I wake up just in time to have a small snack and go back to sleep. It’s very disheartening, because there are so many things I would like to do. We always hope this is temporary, but you just never know how long it’s going to last.

When these sorts of things crop up, we have to make decisions. Decide what our priorities are. Our worlds get smaller. We have to decide what to keep and what to cut. It’s not easy. Friends tend to pull away. I’m to weak to worry right now.

I’ve lost another five lbs. I’m on the verge of 200 at 202. I’d love to break 200, but I’m worried. This week was due to nausea and sleeping through dinner. Five lbs a week is also too much. What can I do? I eat when I can.

I am scheduled for Botox injections on April 4. That should help. Until then… I did receive the stronger Cannabis, both in THC, but mostly CBD, but husband needs to grind it, because even though it’s milled, I like it finer. Picky, picky!

This has taken a lot out of me. I need to rest. Soon.

Happy Zebras! 😘

Worn Out

It’s been a long week. I don’t feel like I’ve had much time to myself. My kids have been needy. Which is fine, I just haven’t had any recovery time. I don’t feel like many of my interactions with the world have been all that pleasant, either. Every second person who contacts me on Facebook messenger is trying to sell me something. And these are brand new friends, not people I’ve had interaction with!

My lovely husband ran out and picked up new cable boxes for us last night. All last week they wouldn’t turn on, I couldn’t get any television at all..unless it would randomly decide to turn on, which it did occasionally. But mostly it would be pixillated garbage. The cable company would reset, but last night they finally said, yeah we have to replace those things, so he took them in. It’s great, because now I actually have room to record stuff. This has 400x the space or something. But the downside is I can’t read the guide. It’s on my tablet, but… blah.

We did our taxes. We spent $34,000 on out of pocket medical expenses last year. We are damn lucky to have that money, that’s my pension/Ltd money income right there. That went to medical marijuana, therapy for me and the kids, orthodontic work, likely, and my injection fees for Botox. I was mistaken about the tax situation. It turns out we get 3% of it back in our taxes. Whee. I don’t know what I could have done without that treatment. I’d probably be dead. I’d be in so much pain. Those are my two main sources of pain relief, Botox and mmj. Not to mention getting into the pain clinic which costs. There’s a huge fee. I’d have done myself in.

My neck is hurting so bad and I have such nausea today I am in tears. I had to help my son today with homework, and I snapped when he stabbed me with his pencil once too often. I feel awful.

I just need a break. I need a night out. With friends. Not a tall order at all!

Hope you’re having a great 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?