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? 

Musings

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I had a huge nap this afternoon.  I’m feeling somewhat refreshed. I can always sleep. That’s the problem. These damn medications. If I take enough to ease my pain, I am drowsy. If I take a sleeping pill so I can actually sleep, I’m tired the next day. If I don’t take the sleeping pill, I have painsomnia.

That right lower quadrant pain is back. My husband calls it my porcupine. I may have started that. It’s so painful. I’m nauseated. I haven’t eaten much today. That may contribute.

Am feeling slightly disappointed. I originally started this blog to help my friends understand what my life was like. Instead of writing it on Facebook, which I felt was intrusive, I brought it here. You guessed! No one is reading, I’m speaking to people who already know what it’s like.

I find I’m running into envy from people who don’t know what my life is really like. From people who presume I’ve had things easy. I try not to complain about my aches, my pains, my financial burdens, my pain crises, because it’s boring. It’s boring to read about, and it’s boring to talk about. I don’t want to focus on those things. I want to talk to my friends and be a real person. An average person.

Glancing at my Instagram feed, you may get the impression I live a luxury lifestyle full of makeup and glamour. I do buy a lot makeup, and I constantly feel the need to defend this, however it is my main form of entertainment. It is essentially all I do for fun. I do not leave the house most months, so buying some makeup, putting it on, taking some Selfies can be tons of fun! Throw in an old product once in a while, plus my husband goes without so I can be entertained. My children are not huge consumers, and having free time plus loyalty points means I can cash in on sales. It, like most of the internet, is illusion.

I know I have advantages. My husband makes quite a bit of money. Why does nobody ever ask me about the career I lost? The one I’m mourning? Do they know his every success kills me a little inside? But we are sacrificing much of our kids’ future on medical expenses. Without some clever accounting, and massive amounts of luck, we probably wouldn’t be able to retire at all. My husband currently has to work until age 72.

Many people assume I don’t have an income. As a 50th anniversary gift, my husband and I paid for my in-laws anniversary party. They were given a cheque from our joint account. They still thanked him. Sent him a thank you card, and bought him a thank you gift. We’ve been married 15 years.

Another thing is that I am older than many of my friends. I don’t know if it’s the EDS that’s kept my face youthful looking. It could be good genes, or perhaps hiding in my bedroom for 15 years away from sunlight, but maybe people think I’ve achieved things at the age of 30 instead of nearly 50?

I don’t know what to do to dispel these myths. Do I start being honest? How does one be honest and upbeat? Can it be done? Maybe I should try anyway. I’m sick of being treated like an airhead princess.

Stay beautiful, Zebras! 😘

Fitting In

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I’m struggling a bit. But it’s only a bit. I’m finding it difficult these days to keep ignoring obvious ableist behaviours. I’m seeing it everywhere, stores offering special prices if you just come in, my own government just offered a special movie points program if you added a special fitness program and counted your steps. The former mayor of the city is running a charity to climb the stairs of the CN Tower, with language that assumes we are all at home sitting and waiting to join him. I’m increasingly feeling like I don’t belong in this world. It certainly wasn’t made for me. I don’t know if I should speak out.

My flare-up seems to be under control for the moment. I’m hopeful I can hang on for a while. I think Ren of Broken Down Body was really on to something when she suggested my psoas muscle. This could explain the whole pain wrapped around my back and everything. I’m still taking everything in my arsenal, and trying to rest.

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I was so absent-minded yesterday, I put a piece of bacon in my drawer. Don’t do drugs! 😃

My husband has his eye infection thing back. We assumed it was an eye infection, treated it with steroids, as soon as those stopped, his eyes were red again, started stronger steroids, those stopped on the 23rd. We expect it to be a systemic reaction maybe? The eye doctor may send him to either our GP or the ER to get bloodwork. The concern is with the ocular swelling that was going on. He’s booked tomorrow semi off work, because his eyes hurt so much, especially with any light.

As I think about it, my wish is to be average for a while again. I miss so much. There is so much I’ve given up. This stupid illness. I try to have as much fun as I can. I try to hide my disappointment from people. I swallow a lot of my resentment. If they only had an inkling.

My life was supposed to be so much different.

Stay in the light, zebras! 😘

Finding Joy

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My pain is feeling better. My breakthrough pain is subsiding. I feel it’s under control, but still a hair-trigger trap. I am taking my breakthrough meds. It sounds like a children’s book.  “She takes her breakthrough meds for her breakthrough pain, in her breakthrough house…😀”

My son came home from his school trip last night. He wouldn’t even speak to me. He wouldn’t come near me. He was exhausted.  He hadn’t slept the whole trip. This morning he revealed he had a panic attack on the bus coming home.  After 3 days of poor sleep it isn’t surprising. I hope they weren’t too cruel, however grade 7 boys… he won’t say.

wp-1488055003514.jpgI had a good chat with my sister. I love it when she’s able to chat. Shes teaching English in Beijing.  I was whining about my flare-up and she, in the spirit of those who are oh, so well-meaning but not helpful, suggested I try hot water, trying to be funny. She suggested I drink it until I was dead. It struck me so funny. She always cheers me up. She sent me the cutest video of her dancing with one of her students! It was the cutest!

 

Let me share other places I find joy!

Beauty and self-care:

Don’t automatically knock this. There is a lot to be said for putting some effort into your routine if you’re feeling up to it one day. I don’t necessarily mean every day, if it’s not your thing. But if you enjoy it, put on makeup,  pull your hair back if you can’t do both in one day. Take some photos. Remind yourself you can look average. Do a mask. If your products are too precious, see if you have the spoons one day to make it into a Sephora or another store for a makeover, or if a friend will come over and help. Guys, too, can benefit from a mask, brow trim, and foot mask.

Box subscriptions:

There is a cost associated with this, but if you can ask for one for a gift, you may be on to something. Things like Topbox in Canada can be had for $12 per month, so shop around for your favourite things and see if there is something you can take advantage of. 

There are more than just Beauty boxes out there. There is everything from beer to razor clubs to monthly menstrual clubs. My advice is to find a regional subscription box blogger and go from there. Two I like are @pinkaboutboxes on Instagram and @girlmeetsbox also on Instagram.

Product Review Clubs:

I am a member of Influenster.ca and Chickadviser.ca. They provide samples of products to be reviewed. Influenster is very hit and miss, Chickadviser.ca you can sign up for your products, although they sometimes send you things you don’t sign up for. It’s always stuff you use anyway, like shampoo, so its not like I have to go out and try to use a chainsaw! 😃 Product Review clubs only send out products a few times per year, so it’s not a large commitment. Influenster sometimes has you post to Instagram, it’s a little more involved, but lots of lead time.

Not only does this give you a bit of a hobby if you want one, but it gets stuff for free, too. A bit of digging can show the amazing plethora of items available. Many beauty products, but that isn’t all – Chickadviser.ca has plenty of calls for other items I’m not qualified for because of my eating plan. See what is available in your area.

Blogging:

By now you’ve figured out that I blog here. 😄  I also blog http://www.squidgesbeautyhaul.wordpress.com about my Beauty purchases and collections. Is there something you collect? Are obsessed with? Maybe you should blog about it.

Instagram

I’m also on Instagram @squidgeaboo with my Beauty collection . It’s fun. I do it from bed. I take pictures of my old stuff and my new acquisitions. What could you show off in photographs? Yes, a daily photo of your cat would be a hit. It’s the internet!

Guilty Pleasures

I will share this with you as long as you promise to stay friends with me. I will reveal my most disgusting guilty pleasure. Okay? Ready? I read Teen Mom gossip. I don’t watch the show, but I can’t not know what that Farrah Abraham gets up to! I’m so ashamed!

I suggest you develop some guilty pleasures of your own. I was going to check and see when the Real Housewives of Beverly Hills was on because Lisa Rinna is such a train wreck (I don’t know her Irl personality, but I hear it’s less bizarre) and they are starting a Toronto one, but I think it may be detrimental, all that yelling and backbiting. I’ll think on this one.

Good TV

Good positive uplifting TV shows

  • Who Line is it Anyway?zd2spvi4vbleo
  • Bob’s Burgers
  • Mrs. Browns Boys
  • The Simpsons
  • Friends reruns
  • Unbreakable Kimmy Schmidt
  • The IT Crowd
  • Last Week Tonight
  • Vicar of Dibley
  • Parks and Recreation

 

Internet Surfing:

When I find I am just in the mood to surf the Web and not really to interface, there are a couple of things I do.

  • Shop. That’s pretty self-explanatory.
  • Play on Kickstarter, this is new to me. I had not realized the fun one can have, and the creative items being made here. Do not miss this.
  • One of a Kind Craft Show: This is a quarterly show in Ontario, filled with artists. They have a website, I can peruse them for hours.
  • eBay poking around: I will often play on eBay for hours, looking for old toys I once had, evaluating some of my treasures, looking for weird stuff.
  • Cracked.com: goodness. If you go here, have someone check on you. You will get lost. Fascinating articles, one leads to another.

 

There are some of the ways I ensure I have joy in my life? What do you do to make sure there is joy in your life?

Stay joyful, my zebra friends! 😘

 

 

 

 

 

A Delicate Matter

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Firstly, I am in a slightly better position as to where my pain is. I’m more stable. The area is still very tender, and I’m trying to be delicate with it. I’m as medicated as I can be, and am trying to relax.

Another piece of good news is my son is on his way home from his school trip. I’m so pleased he did it, as there was some questions about his anxiety keeping him home.

Part of relaxing, I’m finding, is staying away from social media. This is unfortunate, as I don’t have many other ways to socialize. I made many new friends after Trump was elected President in the United States, many of us lefties banded together, they let me play from Canada, and I was very happy to do so. However, I’m finding many people are not at all sensitive to the needs or lifestyle of someone with chronic pain or with a chronic illness, and it’s been a huge adjustment. Not just with new friends, either.

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This week, especially, with the lack of sleep and needing to take extra medication has really underlined this phenomenon to me. I mean, I know I’m a sensitive person, but there’s a point. I had posted something and worded it awkwardly, and instead of saying I worded it awkwardly, my friend made fun of it, like I knew, or had done it on purpose. I don’t mind the teasing, but when I’ve goofed, because I’ve been drugged and sleep deprived, don’t think I’m going to ‘get’ something. It’s almost like expecting the parents of a newborn to pick up on subtleties. Not going to work. I constantly remind myself to be flattered to be mistaken for a normal, but I get frustrated.

I had another person go off on me because I used a word she didn’t like. Often, I find, people will hear I’m disabled and hear ‘captive audience’ or ‘someone always available’ those actually in this situation know there is so much we can do, if we want to, or have the spoons! Unfortunately, I find I often get imbued with many attributes by people I’m newly meeting, which I don’t possess and are then punished when I turn out to be me.

I am particularly sensitive to these issues, I suppose, because I work so hard to express myself. It’s not something I take lightly, and I actually care about people, so when I am shoved aside accused of being uncaring based on a poor word choice after a lengthy disclaimer about being tired and on heavy meds but still trying to be there… it’s frustrating. Do people hear disability, think deformity and don’t even consider pain?

I suppose it’s just hard right now. I have a few close friends,  but no one nearby. I have friends on social media, but it seems many of them are leaving in droves as I can’t be political enough or posting enough for them. I am getting damn sick of the sexual harassment. It’s not frequent, but it’s traumatizing. Especially when you feel awful.

I didn’t mean to be such a downer today. I just feel a bit lost. I’m not sad or angry, just pensive.

Hope you’re having a great day, Zebra friends! 😘

Pain, Pain Go Away!

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Finally, I came to my senses last night and took a sleeping pill. I don’t know if the nights of not sleeping contributed, or if this was on the way, anyway, but when I woke up, that right lower quadrant pain was searing. It started last night, actually. My husband was making dinner, and I went into spasm. It took my breath away. I wanted to call him, but I couldn’t even breathe. It lasted for nearly three minutes, but it felt like an hour.

Today it would twinge and spasm with any movement. I took my allowed medicine, the breakthrough stuff, and tried to relax, but it’s hard. Eventually, the lack of sleep and meds caught up, so I took a nap. I am feeling calmer, but still feeling like I’m sleeping with a live grenade.

These are days I just want to eat sugar and cry. So I had some cookies and my nap.

I still won’t see my pain specialist about this until June. My choices until then:

  1. Attempt to harass his staff
  2. Rush him at the next appointment in April
  3. Complain to my GP, who sent me to a specialist so he doesn’t have to deal with this
  4. Trips to the ER
  5. As much breakthrough medication as I can

I’m slightly nervous about harassing his staff, because they’ve been fairly clear they have nothing. I will definitely mention it in April at the next appointment, but I’m kind of annoyed the office staff goes *shrug* when you are in pain. My GP deals with general stuff, and is in no way prepared for this, so I’m not sure he’s appropriate. Hauling my ass to the ER isn’t effective, may get me branded a drug seeker, but if it gets too bad, I’m at a loss, not knowing what else to do.

What I will try for the next couple of days is medicating to the fullest, staying still, resting, relaxing, and hoping?

Any suggestions welcome, except ‘go kill yourself’. Wait, this isn’t Facebook.

Have a pain free day, my Zebra friends! 😘