So, How Can A Designer Call Herself A Chronic Illness Blogger?

The quick answer is the illnesses came first and affect every design.

I’m an introvert.

I’m a creative.

I’m a reader.

I’m a writer.

I’m a maker.

I’m a crocheter.

I’m a knitter.

I’m a designer.

I’m a daughter, a sister, a sister-in-law, an aunt and a great-aunt. I’m a niece and a cousin.

And I’ve been living with chronic illnesses for decades.

I have cervical vertebrae degenerative disc disease with bulging discs and nerve irritation, carpal tunnel syndrome, chronic fatigue syndrome, Diabetes Mellitus Type 2, fibromyalgia, myofascial pain disorder, recurrent abrasion syndrome with basement cell dystrophy, and recurrent labrynthitis. I am in constant pain. I am on twenty different medications, vitamins and supplements.

I do not work outside the home. I applied for disability. I was denied and am figuring out the next steps. Bridgwater Crafts is my creative business. It is the home base of all my creative endeavours. I’m a new crochet and knit designer. I started in June 2014.

On Monday, January 29, 2006, I awoke sitting straight up in my bed with my heart pounding out of my chest, a very sharp pain in my right eye and my alarm ringing. It was time to get up. I lay back down, let my heart rate return to normal and waited for the pain to go away. After a few minutes, the pain still present, I got up out of bed to get ready for work. It wasn’t until I left my dark bedroom that I realized I could barely see out of my right eye, even the slight 06:30 January light through the window was causing additional pain and my eye was overflowing with tears. I made it to the bathroom where the brighter light was extremely painful and just added to the tearing. I called in sick and returned to bed. I later went to the emergency department. I live in a small town. We didn’t have an optometrist let alone an ophthalmologist.

The physician in the emergency room couldn’t tell what was wrong. He consulted the ophthalmologist on call in the nearest city who agreed to see me the next morning. At that point, they weren’t sure if I had an intraocular hemorrhage, a detached retina or something else. I was scolded for driving myself to the hospital and told I could not drive home. This physician had known me since childhood.

The ophthalmologist determined I had an eye disorder called Recurrent Corneal Abrasion Syndrome. This syndrome usually causes sudden corneal abrasions. This abrasion covered most of my pupil and a large portion of my cornea. He explained it is usually caused by one of two causes, but it was too early to tell which was involved at this point. The syndrome is known to be extremely painful during abrasions and slow healing. Also, once the first abrasion occurs, there is a much higher risk of continued abrasions.

The two causes are previous corneal injuries and another disorder Basement Cell Dystrophy. Basement Cell Dystrophy is a disorder that causes the young cells in your cornea to not form as a unit. Basically the glue that holds the cornea cells together doesn’t work so, as the cells travel up towards the outer layer, they can break apart, causing these abrasions.

I had already talked with my parents to see if I’d had an injury before in my eyes. I had a vague memory of sand in my eyes when I was little. They confirmed the only previous issue with my eyes, beside being nearsighted, was an incident when I was three or four when another child in the sandbox threw sand in my face. I was rushed to the clinic and a large amount of sand flushed out of my eyes but there was no injury. The ophthalmologist said that probably wasn’t the cause, as it was well over twenty years ago and hadn’t involved injury.

So, it was most likely I had the second cause of the syndrome. It took months to regain my vision. A few days later, I sneezed and it happened again. It was during these months I learned how much I needed to see my stitches to crochet in the evening. I still have a parallelogram bath mat I crocheted because I couldn’t see well enough to realize I was missing a stitch at the end of every row and increasing at the start. It was supposed to be a rectangle! It still works, so even though it’s quite faded now I still use it occasionally.

I repeatedly had corneal abrasions closer and closer together to the point I was having two to three a week. The ophthalmologist referred me to an ophthalmological surgeon in another city who could do the last-resort treatment of surgery – photo-therapeutic keratectomy. It’s similar to laser surgery to correct nearsightedness or farsightedness. By the time I saw this new specialist, I was having multiple abrasions daily. It was decided the only route was surgery, which had a fifty-fifty chance of healing the basement cells. Even after surgery there was a chance of it returning in the future. I had the surgery a few weeks later in July 2007. I have had no new abrasions in my right eye. Although I had a few scares which turned out to be just dry eyes.

That October on Thanksgiving weekend we had one of very few opportunities for overtime in my department. Filing was behind and needed to be caught up ASAP. I volunteered, along with a few coworkers. I planned to work two 7.5-hour days of overtime that weekend. Saturday morning, I went in and started filing. After a few hours I started getting dizzy spells. I told the coworker who was also there that I was going home to eat and take a break. I’d be back in a few hours. The spells stopped. I returned to work and started filling. Immediately the spells returned. I worked through it until I had worked four hours total and went home.

The next day my family all got together for Thanksgiving dinner at my parents’ home. It was a day early, but one of us had to work the Monday. I can’t remember who. I started getting dizzy again as the afternoon progressed. It was so bad my sister drove my car back home. I ended up off work until February with those dizzy spells. It was so bad any motion, including eye motion, caused spells. I was diagnosed by the Ear Nose Throat specialist with recurrent labyrinthitis, basically recurrent dizziness. To this day I still get dizzy spells! I was very thankful for my stash of yarn that fall. Everyone got something crocheted for Christmas that year.

Fast forward to August 2010…

Dad had a deadly heart attack. When I called my boss and friend to let her know that night she cried. I told her I was going to need more time than our union contract allowed for bereavement of a parent. I told her I needed two weeks. The clause gave wiggle room for management to give more time. She said she wanted me to have as long as I needed, but our director would have to make that decision. It wasn’t in her power to give. But she would ask. I told her I understood and to use vacation time for the rest. I just knew I wasn’t going to be ready to go back that quickly.

When Mum called one of my cousins, his wife answered. My cousins had been called to the hospital because my aunt, who had been hospitalized for some time, was not expected to survive the night. It was a blow when we were already down. Aunt Sylvia hung on a few days more. She died on Friday, August 20.
Mum was devastated. In four days she lost her husband and big sister. I was numb. I am very fortunate that my immediate family all live here. We were able to hold each other up in those next few chaotic days. Family came from east and west. Some were already on the way when Aunt Sylvia passed. My mother is in the middle of five children. Dad was the eldest of four. Not everyone was able to come to either funeral. It’s a three-day drive from our town to where Aunt Sylvia lived.

Everyone felt tugged in both directions. All three of Mum’s brothers, a wife and a cousin came. Dad’s two brothers, his sister and her husband came. They headed to us the next morning and stayed until after the funeral. We did not have a post-funeral luncheon. We, family, got back together at Mum’s and finished off the last of the food that friends, coworkers and community members had brought. We didn’t have to plan meals for the entire time between Dad’s death and his burial.

Although it was not planned, and totally unintentional, both funerals occurred on the same day at the same exact time. Despite being a time zone apart. Mum jokes there must have been some cursing when they caught each other in line at St. Peter’s Gate!

Although again unintentionally, thinking only to give everyone enough time to arrive, we booked the funeral on my nephew’s eighteenth birthday. We didn’t even know the date. We just said we’d have it that Monday. August is birthday month for my family.
The 11th is my sister and her daughter Rhiannon’s birthdays.
Dad died on the 17th.

My birthday is the 19th.

Aunt Sylvia died on the 20th.

We buried both Dad and Aunt Sylvia on the 23rd, Michael’s eighteenth birthday.

I spent most of those days at Mum’s. My cousin stayed with me. We barely knew each other, but I think my uncle told him to watch over me once he found out I lived alone. We’d come home late in the evening and take a long walk with my husky Mira. Go to sleep. Get up, shower and go back to Mum’s. My uncle and cousin stayed a few extra days after the others returned home. Once I had the time and space to sit, the dizzy spells hit me again. I ended up off work for over two months.

I haven’t driven since that Fall. I had a dizzy spell while driving and hit the curb on a turn. I took the corner too wide. There were children on the sidewalk. They were well away from the curb and I don’t think even realized I hit it as I made that corner. But it scared me enough for all of us. I drove the rest of the way home parked my car and it has only moved once since. I still to this day have spells in vehicles. I get them with rapid movement, vibrations and sometimes for no reason at all, although they have improved greatly.

I noticed a lump in my throat that spring/summer. I thought at first it was a swollen gland from a cold. But the lump didn’t go away. One day, while in Emergency for something else, my family doctor was on call. So, I asked her as we were finishing up to feel it. Was I worrying over nothing or did we need to look into it? She said she thought it was my thyroid and to book an appointment at the clinic. We’d run some tests.

I booked that appointment. As she was writing out the lab test requisitions she said one is fasting. So I asked her to add a fasting glucose if she didn’t mind, as there was type 2 diabetes on both sides of the family. I already had to fast anyway. So she did. She also made me an ultrasound requisition. The next morning, I had the blood work done as soon as I came into work. Two days later I got a call from one of the clinic staff. They had a lab requisition for me. I went to pick it up after work. It was a blood-sugar test used to diagnose diabetes. I took the test. Then the next week I had the neck ultrasound. I couldn’t see the screen the whole time and I’m not trained to read it anyway, but to me it looked like I had two marbles in there.

A few weeks later, I met with the doctor. I was right on the border for type 2 diabetes but due to family history, we were going to start treating it as though I was over and not just barely below limits. So, she made out a requisition for the local Diabetes Program. Otherwise, we were going to treat it with diet and exercise. I also had two tumours in my thyroid – one on the right side and one on the isthmus. She referred me to an endocrinologist in a nearby city and for a radioactive iodine CT scan in the same city.

We were able to book them both for the same day. I had the test in the morning, then the radiologist read the CT scan and called the endocrinologist – they have this arrangement, so out-of-town patients don’t need to make multiple trips. When the endocrinologist walked in to the exam room she introduced herself. Then said she had good news: I did not have cancer, I just had an enlarged thyroid and that the results came back good and we’d follow up in a few months. I said but they saw tumours on my ultrasound. She said the radiologist made no mention of finding tumours. I most likely had Hashimoto’s disease but no cancer. So, I came home from the city kind of puzzled. But they were the experts and they said I was fine.

I left that weekend for a weeklong conference in Vancouver, BC. I had never been to BC. It was beautiful and we had a great time. Midweek, I had a call from the endocrinologist’s office. The conference hall was huge and there was no nearby exit. Even the washrooms had speakers in them so you didn’t miss anything. I let the call go to voicemail and called the endocrinologist when I was back home. She said there had been a mix up. The report she was given before seeing me was not mine but another patient’s. There were two of us from the same area of similar age and both her patients who had CT scans that day. There was a mixup regarding who she was seeing that afternoon. I did have two tumours and would need to come back to the city for fine needle biopsies. A referral had gone out and I should be in before the new year.

That Christmas, Michael, my eldest nephew, moved in with me. He needed to leave the friend’s room he’d been renting since moving out of his mother’s a few months earlier. I matched the price of a room he’d found that was kind of sketchy. He would watch Shadow, Gypsy and Mira for me when I went to my appointments for discounts on his room and board.

When February arrived and I still hadn’t heard from the hospital, I called the endocrinologist’s office. Her assistant said she was on the other line with the ultrasound office right now, as a few referred patients hadn’t heard anything yet. She said if I didn’t hear within two weeks, to call back and she would get after them again. It was over a month before I got in for my biopsies. On May 7, 2012, at 3 pm, while out of town for a workshop, the endocrinologist called. I answered and left the workshop room. I had thyroid cancer. She had sent a referral to the CancerCare Manitoba office and I should hear from them soon. I don’t remember that last hour of the workshop. Just a constant refrain of “I have cancer, I have cancer, I have cancer” running through my head. That weekend, I told my family and the next week my department coworkers. My boss cried and said to do whatever I needed to get better. The next day I got a call from the oncologist’s office with an appointment for the next week.

Mum and I went the next week to the oncology appointment. He explained the types of thyroid cancer and that I had the one with the best survival rate. He explained the surgery. He explained that with this type of thyroid cancer, chemotherapy and radiation are not done; radioactive iodine was used instead. He asked when I was available to have the surgery. I said as soon as he could get me in, that my boss said to do whatever I needed as soon as needed. This was a Wednesday. He said he might be able to do it on Friday, if there was a surgical space available. He would have his staff check. He left the room, and Mum and I just looked at each other, Friday, two days from now Friday.

But, there were no available spots that Friday, so I was booked for the following Friday. He would arrange with the anaesthesia department for me to have my pre-anaesthetic appointment the day before so we wouldn’t have to come back at the beginning of the week.

I was diagnosed May 7 and had my surgery June 1. How’s that for waiting time! When discussing the surgery, the oncologist had said the incision length and surgical time would depend on how things looked once he was inside. It would either be 20 cm or up towards 40 cm (4-8″). I don’t know how long the surgery lasted. No one came to the waiting room to tell Mum that I’d been moved to Recovery. By the time she got found me, I had already been transferred to the same-day care ward. I was already in a bed, still asleep, and the nurses were exchanging my bloody pillow for a clean one. As a surgical booking clerk in our hospital, Mum was not impressed with how out of the loop she was. That wouldn’t have happened here, she told me later.

The oncologist came to check on me and spoke to Mum while I was sleeping. They had to go with the full incision and it was a longer, harder surgery than expected. One tumour was extremely close to my vocal cords and there was a chance of damage. He had found a lot of swelling in my neck, which he removed along with the total thyroid and 100 lymph nodes. Did you know there were over 100 lymph nodes in your neck? I didn’t, after two college-level anatomy courses and integrated classes in certificate programs. Pathology came back that nine of the lymph nodes were also cancerous.
It took me quite a while to be coherent. I remember very little of that day post-surgery. I remember a nurse coming to check on me and removing my dressing, surprised it was still there. I remember getting insulin injections and thinking but I’m not on insulin, but not being able to tell the nurse that. I remember a nurse following me with an intravenous pole on a walk to the washroom. I remembered after being alone in there that I was wearing a backless gown. Then I looked in the mirror and thought sarcastically, I was glad they cleaned me up. They hadn’t done a very good job. And they’d used staples.

As the anaesthesia completely wore off and my meds were tapered down, I realized a few things. I was in a lot of pain. I also had a lot of numbness which I was told would wear off gradually. I’m still waiting for some of it to wear off four years later!
I basically had no feeling from the tops of my ears, across my cheekbones and nose to just above my breasts. My face and tongue felt like I’d been to the dentist. With my mouth and tongue frozen it was like talking with a mouthful of marbles. And the right side of my mouth drooped when I talked. It would all go away but could take a while, I was told, as so many nerves were cut.

Mum and I stayed in the city for a week post-surgery before I was released to return home. I hid in the hotel room most of the time as I had huge drains on either side of my neck for the first five days. I stayed with Mum the first two weeks after returning to our town. She was fearful of complications and lives just a few blocks from the hospital with an OR nurse living on the street behind her. My baby nephew JJ didn’t understand why I couldn’t carry him anymore. I wasn’t allowed to carry more than 2.5 kg (5 lbs). I had a radioactive iodine treatment that September.

Today that ear-to-ear incision (almost, only needed to go a few more cm) is almost invisible. The surgeon was very good about following the natural crease of the neck. The same with the staple holes and the drain holes. Most people, if they don’t know about the surgery, don’t see them. One of the advantages of being very fair skinned, I suppose. I still have numbness from my chin to slightly down my chest. My mouth is still occasionally full of marbles and will still occasionally droop.

After increased chronic pain and continued post-operative pain, I was diagnosed with fibromyalgia and chronic fatique syndrome in April 2013. When I did more research I realized I’ve probably had it since my teens. I’ve had chronic pain for as long as I can remember. And, I had a lot of the symptoms.

After a bad flare that summer, diagnostic imaging showed I had cervical (neck) spine degeneration. Further imaging was done to more accurately see the severity and a nerve conduction test was booked, as I was having numb fingers and hands periodically. The nerve test in September showed “nerve irritation,” primarily on the left and slightly on the right, as well as mild-to-moderate carpal tunnel syndrome in my right wrist. But the nerve irritations were not enough for the pain levels I was receiving, so fibromyalgia must be amping up the pain levels as it so loves to do.

Since I was off work with the flare anyway, I decided it was the time to give learning to knit one last try. So, I grabbed some needles I had from a previous attempt, some cotton yarn and started watching the Craftsy class I purchased in January. It finally worked and I’m off and knitting!

Fast forward to Summer 2014…

My fibromyalgia was flaring, my carpal tunnel was causing lots of pain and I was just counting down the days for my June vacation to start. I started to fear making it to retirement; my pain had grown so much and increasing medication too much made me too foggy to work. One day, just before starting vacation, I decided that my dream of becoming a crochet and knits designer could be started now instead of one-day and then could grow slowly and organically. I could publish enough over the next, hopefully, ten years to provide a nice supplemental income.

Bridgwater Crafts was born. A blog was re-started on an old Blogspot account, quickly moved to WordPress, and a domain purchased. A lot of reading and research occurred. July 2, Alys Cloth was published. July 15, Anya Cloth was published. Vacation was over and things slowed a bit. August 19, Ayla Washcloth was published.

In August 2014, I had my two-year cancer ultrasound. Turns out it’s very painful to lay on your back with a pillow under your spine and your neck turned to weird angles for an hour. The ultrasonographer went over my entire neck, constantly taking measurements. I went into the ultrasound with a bad feeling and left with a worse feeling. Mum and I took a taxi back to the hotel, picked up her car and hit the road. We weren’t even outside city limits and I was taking pain meds. I ended up calling in sick the next day and taking a muscle relaxant because I could barely move my neck.

Two weeks later, we returned to the city for my two-year check up with the oncologist and the test results. My feelings were correct. I had two lymph nodes, one on each side of my neck, which show abnormal on the ultrasound. They were too small to biopsy. I would have to go back in the New Year for another ultrasound and follow up.

September 29, I went off sick again. A bad fibromyalgia flare I’ve been holding back all summer came raging to the surface with the extra stress and seasonal weather changes. Mostly stress I think. I’ve been off ever since.

I released Drusilla Cloth on November 30, 2014.

I had that follow up ultrasound February, 2015 and a follow up in March with my oncologist. I saw the neurosurgeon on December 8 following a December 1 MRI. My neck had worsened over the year. But, the neurosurgeon wanted to wait until we knew what was up with the lymph nodes before deciding on surgery.

On August 21, 2015, I had an eye abrasion in my left eye. It’s the recurrent corneal abrasion syndrome rearing its ugly head. Since then I’ve had abrasions August 24 and 27, October 6 and 17, 2015 and January 27 and March 2016. My optomotrist is treating me this time since we know what it is. We plan for surgery with my previous opthamalogical surgeon. And we’re not waiting as long this time although she want to image my next abrasion first so she can relay exactly where the trouble spot is when she refers me.

Since I started this site I have slowly been blogging more about my life and my health. Recently I decided to transition my business to include chronic illness blogging. I’m talking about it anyway so why not do it more consistently. And that is how a designer can also be a chronic illness blogger. I have so many chronic illnesses no one can say I don’t have the right.

If you also blog about chronic illnesses and would like to talk with other chronic illness blogger, consider joining the Chronic Illness Bloggers Network. On the application please say I referred you. Every referral this month equals an entry in a contest via the network. Plus, it’s great to have others who really understand what we’re going through and Julie, the coordinator and leader is wonderful.

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