Home » EDS » Where I’ve been…

Where I’ve been…


So, I’ve been gone for a bit. I’m lucky to have an amazing website host dude, Jay of Tech Surgeons, who has been updating stuff while I’ve been on a sort of forced hiatus.

If you’ve been following me, I think you deserve an explanation so you’ll understand why I haven’t been as focused. I’ve been living intensely and it hasn’t left as much room for an online life. Let me give you a timeline…

It started in January of 2017. I started off the year right…by finding out the medication I’d been on for my joints was causing extreme tooth decay. One of my most persistent nightmares has been the one where your teeth crumble in your mouth. I know other people have that nightmare, but that was my reality. It’d snuck up on me, but I would bite down and feel my teeth crumble and chip. When I went into my dentist, they mentioned they were aware that Celebrex could cause that. The pharmacy had also heard of that side effect when I went in to get RX toothpaste. I had to eat soft foods for two months as the enamel on my teeth rebuilt, but I ended up with multiple teeth with hairline fractures, two molars that needed to have major repairs, and chips in four teeth. I think I’d been on Celebrex for six months.

In February of 2017, my dog of thirteen years died from cancer. I was right in the middle of finishing up Secrets of Skin and Stone where the main character’s dog died at the beginning. I included my dog in the acknowledgements. I didn’t handle it particularly well, but one of my teenage kids absolutely fell to pieces and couldn’t go to school without crying. So, despite not being in the best of health myself, we got a puppy at the end of February from the Humane Society. Havoc was born on an unknown day the week of our previous dog’s birth so we gave them the same birthday. Puppies are a lot of work. I’d forgotten.

In March of 2017, I went in to have my esophagus scoped to check how bad my acid reflux was. On a scale of one to ten, it was an eleven. Unfortunately, scoping my esophagus knocked most of my ribs out of place and it took three months to get them back in. (I have hypermobility.) I’d never had that many ribs out of place at once and it was staggeringly painful. I was on pain meds for a good portion of the following months. Meanwhile, I was referred on because I had Barrett’s esophagus, which can be the precursor to esophageal cancer, and the reflux was so far beyond normal. I also had my Taming the Pack series released as a box set in ebook form that month. It was a busy month.

In April of 2017, we went as a family to Portland for the kids spring break. I spent most of the trip in a wheelchair from the pain in my ribs and because I couldn’t seem to keep my hips in place.

May was spent trying to get everything ready for the launch of my book, Secrets of Skin and Stone. This was my first foray into YA novels as well as an “own voices” book because the main character, Piper, has OCD. I can’t even begin to tell you how terrified I was that everyone would hate it…and yet I wanted to shout to the world because, FINALLY, it was coming out. FINALLY! I had such high hopes mingled with a desperate sort of pessimism trying to deflate those. My emotions were all over the place. Reviews started coming in and most were good. Some were not, but it’s a book with a trigger warning so I knew it wouldn’t be for everyone. My heart felt like it was on the line, though, and I couldn’t sleep.

And, in the middle, I was visiting doctors. I saw the surgeon about my esophagus and he recommended testing, followed by a surgery on my esophagus, stomach, and diaphragm. I saw my doctor and got a handicapped parking pass…because I finally had to accept that I was not getting better. I used to avoid parking in spots close to a building because I always felt there were people more deserving. Suddenly, I was parking in handicapped spots or near cart returns so I could use the cart as a walker in case my hip dislocated. I was, without a doubt, that unknown, less-fortunate person I’d always saved rockstar parking for.

June roared in with my novel release…and, I thought, I’ve done it. This is it. The rest of this year can just bite me…this is amazing. I’d fought and I’d revised and Secrets of Skin and Stone was finally out. Nothing could steal that feeling of accomplishment…until my grandmother died during my kids’ finals week right after the novel’s release. We decided not to tell them until they’d made it through finals. So, for a week, I was swamped in grief that I couldn’t voice. I felt so numb…like someone had bleached the color from the world. I went through the motions, but I was numb. I went on because you go on. You put one foot in front of the other and you go on, I was trying to be upbeat because of my book and upbeat because of my kids…and I was just shattered. I loved my grandmother more than words and the world is a bit emptier now.

July started off with the best week of my life. My husband and I celebrated our 20th anniversary with a cruise to Alaska. The scenery was gorgeous. The staff of Holland America went out of their way to accommodate me as I was in a wheelchair almost the entire time. It was just amazing. I’ve never had such a wonderful time. Best vacation ever. I came home to discover one of my kids was struggling more and more with OCD and depression. The other was dealing with issues from hypermobility. At the end of July, my surgeon referred me back to the rheumatologists to be diagnosed for once and for all with Ehlers-Danlos Syndrome Type III. It ended up being another “probably” diagnosis.

August was a flurry of getting ready for another school year–this time with two kids in high school.

September was so busy. The kids got into school and then we took them to Walt Disney World because my husband was there for a conference and so we snuck off with him. We had a lot of down days because of my health and my kids’ health. The park was good about accommodating us, but it wasn’t the least stressful vacation by any means. It ended poorly with the airport losing my Kindle in security because I’d been in the wheelchair lane and they took it out…and never returned it. We nearly missed our flight in the nightmare that was dealing with security at the Orlando airport. They were at the opposite end of the spectrum for helping someone in a wheelchair. It left such a bad taste in our mouths that none of us are anxious to go back. It was really appalling actually. I couldn’t believe how badly they handled people with disabilities in the screening process because we had to go through twice.

During October, I had some esophageal testing done that takes the cake for the worst testing ever. Run conduction tests on my nerves to your heart’s content, but I don’t think there’s enough money in the world to get me to do esophageal function and PH tests again. It started off bad because my esophagus is…not great. The lab assistant stuck the tube up nose and down my throat and I threw up and threw up, all over myself. In fact, I couldn’t actually lie down because I was throwing up stomach acid and she was afraid I’d aspirate. After my esophagus was shown to be mostly ineffective, I was supposed to keep a tube up my nose and down my throat for 24 hours to monitor the PH levels. Hahahahaha! I warned the assistant that I have a very bizarre alien probe phobia. What commenced was a nasty stomach acid sojourn in hell as I threw up constantly until stomach acid had burned my throat. In the wee hours of the morning, I was able to fall asleep, sitting up…at which time, I yanked the alien worm out of my nose in my sleep. I woke up to relief…and an invalidated test because I’d removed the tube from my esophagus, but I’d failed it so hardcore that the surgeon said I needed surgery ASAP.

ASAP ended up being November. On November 13th, I went under the knife and the surgeon discovered the unholy mess that was my diaphragm muscle. It was torn and needed a lot of repair. The surgery ran long and I awoke to find out that they were encouraging me to lengthen my stay in the hospital. I also awoke to a fully dislocated left shoulder, but no one would believe me because I had that “probably” diagnosis that didn’t make my charts. Hours later, my husband fixed my dislocated shoulder in recovery. My stomach didn’t feel awesome, but my shoulder felt like someone had shoved an ice pick into it. It was just blindingly painful, even while on heavy drugs. The surgeon anticipated me being on a liquid diet for about a month…so it’d be a liquid Thanksgiving. In the end, the recovery has been glacier slow and it wasn’t until March that I could really eat most solid foods…most days.

The internal damage discovered during surgery was finally enough for a diagnosis…or two, actually. I was diagnosed with Ehlers-Danlos Syndrome Type 3 (Hypermobility) and then also Undifferentiated Connective Tissue Disease. Deterioration in various joints were also noted and I was put on an immunosuppressant to stop the connective tissue disease from attacking my soft tissues, organs, and joints.

December crept in and I took in one of my teens to get put on medication for OCD and depression. The days were too hard for both of us, though we’d tried many alternatives and the doctor felt that therapy would be counterproductive. Knowing you’ve passed on something like OCD is hard. Knowing you’ve passed on all these things that I have…and seeing your children struggle with them. You feel like a lesser horseman of the apocalypse.

At this point, I just wanted 2017 to end. It could just bite me. It was too intense and it had won. I was trying to do anthology releases and also promote my Stealing Time series and I was just done in. My health was bad. My two kids were struggling. My husband was trying to juggle his very time-consuming job while helping me and the kids. It felt like too much.

We were packing up to leave for what felt like the most deserved vacation ever on the 20th of December…and I was home alone with my daughter when all the lights in the house started flashing like it was possessed. Speakers smoked and ozone filled the air as sparks started flying. I bolted to our fuse box and turned off the power for the whole house. The catastrophic power failure was beyond what my husband could fix and we couldn’t find an electrician as it was days before Christmas. We had to leave the power off completely. We threw away most of the food in our fridges and freezers and locked up the house and moved in with family.

It was the second week in January before we got our power back on. The home insurance helped out quite a bit, but you can’t imagine the stress. So much stress. We even ended up in a local hotel for a bit as the electricians worked with the power company to fix our frayed electrical line and malfunctioning breaker box. Half the appliances in our house were a casualty to the event.

My health just seemed to be on a steady decline and we had to switch to injected immunosuppressants because the others made me violently ill. I still couldn’t swallow very much and got sick frequently. I’d lost over 20 lbs since my surgery in November. The injected immunosuppressants are essentially chemo drugs and my hair started falling out constantly. I kept getting sick and they caused strange reactions with other medication. I’d noticed right before Christmas that my left arm (the shoulder that had been dislocated) was having problems with sporadic paralysis and numbness. The doctor currently believes it was nerve damage, but I’m in the process of getting more testing done. It’s possible that it won’t ever improve and it’s actually gotten worse lately.

For Valentine’s Day, I got tested for cancer as one of my tests kept coming back with bad results. They ruled out aggressive cancer, but I got referred to test for low-level cancer, among other things. I also had to up my OCD medication because I was dealing with depression like I never had before. The doctor warned me that it was very possible I’d lose all my hair so I went in and had my waist-length hair cut into a short pixie cut and donated the hair. Two feet of hair is now doing some good, hopefully, and I feel smug that I donated it before the disease and meds could take it. But I’d had long hair my entire life. Once upon a time, losing all my hair was on par with my nightmares about my teeth and alien worms or probes. Now, hair is just a thing. Teeth are just a thing. Alien worms should all die in a fire because that’s still scary as hell.

I can’t seem to stay well while on immunosuppressants. If I skip my injection, my body swells up and I have trouble swallowing through my swollen esophagus and diaphragm. If I do my injection while sick, it goes into an infection. I’ve already had both an eye infection and a sinus infection and I think I’ve been sick the bulk of 2018 so far.

My health has been so sketchy that we stayed close to home for spring break and spent it on a houseboat in downtown Seattle.

Soooooo…this is my life. It’s not all bad. I’m finding balance and trying to figure a path through all this health stuff. Luckily, everyone has been really understanding and helpful. I also didn’t have as many contracts in place, thankfully, so I’ve been able to concentrate on healing. I’m trying to get involved again online. It was all I could do to get my real life commitments done before, but I feel like I can do more now. It’s slow, but steady.

I think, in the end, balance will be key going forward…as will be recognizing what is important. You don’t always recognize the value of things until they’re slipping away. I have a lot less fear lately. I’m finding…acceptance. The cost was high and my need for control put up a huge fight, but what is going to be…is going to be. You fight the good fight and your best will have to be enough. I’m also letting go of the need to place blame. We’re all a bunch of human critters trying to find our path.

Last year was a year of complex emotions. There was death and loss. There were celebrations of life and love. I accomplished. I failed. I was a inept mother and a lackluster wife, but I was the best Wendy I could be and I think that’s enough. No, I know that’s enough. It has to be. Because there have been days lately where I’m worried about my symptoms, especially those with my heart, and I find myself wondering if I’ll wake up if I go to sleep, but I do and it’s another day. Tomorrow is another day…and that’s a gift I never appreciated, I think. It’s another day to either succeed or screw up, but it IS a day. My heart beats. My lungs inflate. The future is undetermined and that’s a gift. In all the studying of weird medical issues and discovering the complexity required to keep our bodies functioning, I can see the miracle of my health up until now. Yes, it’s a bit of a crisis but it worked for so long. The human body is a wonder.

Anyway, I hope this explains my absence and my need for tolerance.

3 Responses so far.

  1. Your need for tolerance? No, what you need is a medal, maybe two. One for courage in the face of all the sh*t life is throwing at you, and one for competence in dealing with it. Oh, and one for your hubby for being a saint.

    I wish I were closer to you and could offer you more than the ubiquitous thoughts and prayers that have been tossed around so much lately, basically because “thoughts and prayers” are being used as code words for “we’re not going to do anything about your problems” by skanky politicians when faced with everything from gun violence to sexual assault. But, there you are. That’s what I have to offer.

    If there is anything I can actually do that will help you in any way, please let me know. Email me or tag me on Twitter. *air hugs*

  2. grandmatina says:

    I’m praying for you and your family. There’s always a good reason why we go through what we go through. When I find it ill share it with you. Same here with Rheumatoid Arthritis shots in my back next is surgery. I know someday the world will be a better place and all the pain and sadness will vanish. I just wish it was now for all of us. Take care of yourself and your children. Spring will be here soon with beautiful flowers and sunny skies. Tina Myers

  3. underpope says:

    Thank you for sharing this all with us. I’d noticed you weren’t on Twitter much, and I was getting concerned. I know we’re nemeses but I can’t bring myself to do anything but cheer you on. You’re doing the best you can under horrific circumstances, and I’m pleased to call you my friend, even if it’s only online. 🙂

Leave a Reply