I Don’t Want to be a Pirate!

giphy5

…and I don’t want to walk a marathon, either.

So, I went to my appointment at the brand new EDS Clinic last week. I managed to survive. It took me a while to not only recover physically from the appointment, but to process the appointment itself.

Overall, the appointment was a success, I think. I went into the appointment with a fairly open mind, free from expectations, just hoping for some benefit.

Now, it seems the purpose of this clinic is to gather specialists who have an interest in seeing patients who have Ehlers-Danlos Syndrome. They currently have a gastroenterologist, a psychiatrist or psychologist I can’t remember which, and are working on the physiotherapist.

They reviewed my case, and then did a physical examination. First there was one doctor, then another came to see me and did her review. This took over two hours. Nothing special, except they detected arthritis in my left knee, which would explain why it hurts so much, and probably why the pain wakes me up at night. This is fairly new.

Now, really, aside from pills, the only treatment for EDS is physiotherapy. We all know this. So it was no surprise this was the hard sell I was given. They told me I was severely deconditioned. I cannot argue with that at all. But it was presented as: the doctor would say it normally. Then he would say it slowly, providing a long explanation. Then he would reiterate it quickly. He tested me for POTS, but kept me standing up, in pain, as the machine kept erroring. Then, he made a note for my doctor to monitor my blood pressure because it was borderline. I was so annoyed. This was toward the end of the appointment, I was in so much pain, the room was spinning, and nobody was nearby to catch me. Gee, blood pressure high? 🙄

One thing I consistently find frustrating is when doctors hear I spend my day in bed, they shut down right there, end of story. I am a complete invalid, sickie. They do not listen to why I choose a bed over the sofa. Firstly, all of my stuff is handy in my room. Secondly, I can stretch out and work out whatever kinks I get when I have space. Essentially, every morning, I fold up the blankets so I have room to work. There is a reason my nickname is Hamster Girl!

Another issue, he seemed not able to grasp the concept my pain clinic was not fully looking after my needs. As of this point, I have only had one Botox Migraine treatment since June 2017, and no Botox in my body at all since June. Although controversial, the body injections helped me a lot, and I am hurting! (Side note: the pain clinic has sent out a note saying they will no longer be doing injections. I also remembered, in my last convo with my pain doc, he said he wanted to switch my pain pills as he felt they weren’t working, I agreed.) Anyway, as we were about to leave, I blurted out we needed a referral to a pain clinic. Any Pain Clinic! He obliged. (Oh! I didn’t receive the note yet, but was told about it because the old pain clinic manager called me, as they had a cancellation with the old pain clinic’s new neurologist for next week. I mentioned this to the EDS Clinic doctor with some of the symptoms and he was very concerned about my head situation.)

Another weird thing was, he asked me if I exercise, and I said I do stretches, which he said do not count. He only counts timed exercise. Well, I hate timed exercise. I told him I used to be very active, walking everywhere, and that doesn’t count either. He suggested I go for a brisk walk. I nearly made another suggestion, but we had moved on.

I always love it when I am told things that hurt ‘shouldn’t’. Like my Symphasis Pubis. I began laughing. He told me it especially shouldn’t hurt because my daughter is nearly 16. Great. I will tell it. WTF?

All in all, it was a valuable appointment. I completely agree that I am deconditioned and physio with someone competent would be amazing. I had a really good guy for a bit, but I was in too much pain to continue, and three times a week – I was too weak to even do that. I think this is even more gentle, more home-based. I’m slightly nervous, because the time before the good one, the physio was all “join a gym! Join a gym!” Not good.

I didn’t like that they were trying to goal-set for me. One doctor wants me to start pool walking by the summer, and the other doctor was “I want to see you run a marathon in five years! Ok walk.” I have no desire to do either of those things. Oh, and the male doc kept saying “you’re still a young woman!” Uh, more than 3 and my bullshit detector goes off. 😆

They were both really pressuring me to start physio now! Now! Now! I do understand momentum is important. But I am not certain they are understanding how messy my pain management situation is. Yes, it’s fear, too! I barely sleep because of pain. I am just hanging on managing my pain. It’s very complicated. I spent this weekend mostly horizontal, trying to stay home from the emergency room. That’s how much that appointment took out of me.

I can completely see they are right. I need their help. But I am scared to add on more without more pain support.

I have scored a gastroenterologist, a therapist, a physiotherapist, and pain management. Not to mention neurology. Here’s hoping that appointment answers some questions.

Thank you to everyone for all your love and support.

 

Head Pain

giphy7

Aaagh My head! My head and neck are really sore. I’m just in so much pain. The back of my head really hurts. I fractured my skull in 1992 after a fall down some stairs. Like, a flight and a half. I saw my boots silhouetted against the sky. And I remember nothing. I woke up 10? Minutes later. I was taken to the hospital when fluid was leaking out of my ears later that day. I had some bladder incontinence for a day, but then was better and they sent me home, no follow up. But that’s where it hurts.  I’m also quite nauseated.

I rubbed Voltaren on my neck last night. Oh! Heaven! 😍! My neck is so much better. It may be why my head hurts, as I tend to have migraines when I relax. I want to be put in a harness and hanged by my neck so I can straighten everything out. My husband suggested he crack me like a whip to put everything into place!

I’m in a happy mood, my makeup guru drops a makeup collection today! I’m so excited! My friend made my week the other day. She went blonde, and said I had inspired her, because I have so much fun on my Instagram and beauty blog with different lipsticks and makeup. Wait until she sees my new lashes! Also, she’s quite a beauty. I’m flattered to have inspired someone so fabulous!

I have an appointment with my therapist today, and I’m slightly displeased. Mildly miffed? They have a 48 hour cancellation policy, as one does, and I understand it’s to keep those reluctant or anxious from canceling at the last minute every time. However, I don’t know when I’m going to be hit with blinding pain every time. This is not a therapy avoidance tactic, and although my therapist is kind enough to meet with me by phone, I am not exactly getting my $200 worth that I am paying out of pocket. Anyway.

I’m in tears from pain now. Still happy, though. You zebras know what I mean! Just vaped. Lol! 😂

Have a good day Zebra friends!

PS. To whom it may concern: I didn’t see any owls on my Facebook. If you go to my WordPress page, the icons at the top? Should take you directly to me. My avatar shows half my face. Also on my WordPress site is a contact form to email me so you can send me your name, I can look out for you!

My head is mushy and um… sorry. I am intelligent.

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.

wp-1488284129581.jpg

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? 

Worn Out

3o6mb6iownxr8uvrea

I posted about my weight journey yesterday. It was a post I had wanted to do for a while, and I needed some time yesterday to process.

I was supposed to go out with my good friend on Sunday, but hadn’t heard from her by noon. She called me at three, she had a family emergency. We had a good talk, and she let me know a therapist we had both been to see had died just last month. The therapist was just a couple of years older than we are. She apparently had an operation, was fine, and then caught a devastating infection. I saw her for about six months. The reason I stopped was because she was on the second floor of a renovated Victorian home. Just a stunning office. However, I was having trouble reaching it on the narrow stairs when my knees started to give me problems. My new therapist I found when I was having pelvic floor therapy. They insist you see a sex therapist. She and I really clicked, and she does other forms of therapy, so we started working together. Another bonus is, she sees me by phone, because she knows I’m actually doing the work, so that’s fantastic. I am still torn up about the loss of this lady, though. I had in my mind, somehow, thought I might go back to her, just because I liked her so much. You don’t expect to lose people so young. Or maybe I’m not young.

Therapy bills are choking us. At $200 per visit, my son is going 2x per week for Autism therapy, my daughter 1x per month, and I’m finally down to 1x per month for traditional therapy.  $1,200 is a lot. Add in my medication, which most of us covered, thank goodness, my injection fees are $225 every 10 weeks, if I want to start-up with regular and pelvic physio again, I’m going to be expensive. And then there are the cabs to and from. I’m not up to public transportation yet, and our Wheel-Trans is great, as long as you’re not in pain. I mean, I’m really lucky, we can afford it. I’m not whining really, I’m kind of scared, actually. I say it’s the money, but last time I started physio, I went into a pain spiral that lasted months. I don’t know if I should leave well enough alone. The physiotherapist said he couldn’t help my pain, but maybe my stamina. He could also help with the disassociation I have with my body. I can’t tell when someone has their hand on my leg, for example.  I guess I did that to deal with pain.

Pelvic therapy really helped me relax. I keep my whole pelvis tense, likely because of endometriosis pain. Trigger point massage was helping, but I got hit with that flare. I just am afraid to try again. Is it worth it? It was nice feeling relaxed, but I really don’t want to be that sick again.

I had the best nap yesterday afternoon. I went to sleep at 4:00, intending to get up at 6:00. Slept deeply until 8:00. But it was delicious.

My abdomen is very crampy. I have a Mirena, so it shouldn’t be menstrual. I wonder what is going on. I feel like curling up in a ball and crying. Maybe I just need a rest.

Have a bendy day! 😘

Transporting my EDS Body

p2zluyghl1awy

I don’t get out often these days, but when I do, I have several options. Lets look at them.

Walking

Walking for me is problematic right up front. My lower back pain is unpredictable. Some days are better than others. I’ll tell you a huge secret! No, I don’t feel different after losing weight. My pants don’t fit. I don’t miraculously feel lighter. Sorry to disappoint all the doctors who asked me that. My knees are still as wonky as always. They tend to sublux and cause me to stumble.  I found that wearing a small 1/4″ heel occasionally will help with pain. I don’t know the science of it, but I like it. I have orthotics, thank goodness my company pays for them, they helpyaqsguxbyq1jc immensely. My hips and knees aren’t as sore with them, and I use a cane. After about 20 minutes, my wrist and hand are very sore, but I’m not walking that far, anyway! I can’t walk more than half a block, and that’s slowly on an excellent day. My back is too awful. Stairs are hard. We live in a 2 storey, and I’m upstairs. I need to go to the dentist on Monday, and I’m afraid of both my stairs and theirs. When I first made my initial appointment a few years ago, I asked if the office was handicapped accessible and was told yes. The flight and a half of stairs tells me otherwise. But he’s a great dentist. Even though one time my son was helping me up the stairs there and a kid came running up and pushed by us and i nearly fell down the stairs. I still have nightmares. Good thing husband was behind us and grabbed her before she could do anything.

When going down stairs, I usually have husband or a kid go in front of me, and put my hands on my shoulders for balance. We then walk in tandem, like we were going through a haunted house.

Wheelchair

I do not own a wheelchair, so we have occasionally rented or borrowed one from the site we were visiting, or a rental store. These are good for longer trips, I’m much more comfortable,  I can relax and participate, I don’t get tired right away. My time here is about three hours. On an exceptional day? Five, but that’s with a week’s rest after. That’s pushing it. My husband usually pushes, but friends have stepped in. I have contemplated a scooter, but I want to lose weight first. I don’t want to be a stereotype. (Kidding, I’m actually just vain and cheap. I dont know that I’d use it often because I’m hurting right now, but maybe if I’m feeling better. They are really expensive, so I want to wait until I have a better idea of what to use it for.)

Car

I didn’t learn to drive until I was pregnant with my son, and even then, I never drove on the highway. Shortly after his birth, my pain increased again, and thusly, my pain medication. Did I want to be a new driver on pain medication? Nope! Especially not with two babies at home. So, I gave up my license. Fortunately,  I live in the largest city in Canada, and Ontario provides a non-drivers license. It’s a license that acts the same as a driver’s license for identification for non drivers. It’s fantastic, because I went to get cable hooked up at my new apartment, and they wouldn’t do it because I didn’t have a drivers license. Husband did it for me, but what the hell? Anyway, husband does all the driving. He takes public transportation unless chauffeuring me, or getting groceries. I can’t sit in a car too long, though. We just upgraded our car in 2014. Previously we had a 1989 Caprice Classic. This one is far more comfortable. My parents and in-laws live an hours drive north, so visiting is tough. I only made it once last year. It has to be a really exceptional day. Exceptional days aren’t that common.

Public Transportation

I used to take public transportation all the time. We have a good system here, no matter how many people complain, but I can’t walk the two blocks to and from the stop anymore, and I usually don’t get a seat. If I don’t get a seat, I’m usually falling all over because my balance is so bad. The street vibrations are terrible, they flare my pain incredibly. The stations, if something is out-of-order, the elevator, escalator, I’m screwed. For the number of times I’m out, it’s too risky. I could get hurt so easily. People get so impatient, I’ve nearly been pushed down the stairs a number of times.

Wheel-Trans

Wheel-Trans is run by public transportation. It’s a service for the disabled, and you need to qualify. Once qualified, you arrange in advance for a ride, and a car or Wheel-Trans bus picks you up and drops you off. You can arrange for a return ride as well. All for the cost of a transit fare. The issue is, they can drop you off within an hour of your appointment and pick you up within two hours after. Lets say you have a therapy appointment that lasts an hour. You take 20 minutes to ride there, they drop off 2 customers. So they pick you up 2 hours before your appointment,  get you there with an hour to wait, you have your appointment, you wait two hours for them to get you again, ride the half hour home, nobody to drop off this time. That’s a long day! If you’re in pain? Not happening. And they are on a tight schedule. If there are any screw ups? You are late. I used them a lot when I went out more. It’s easier at night, they’re not as busy, but doctor’s appointments happen during the day, mostly. I had this one therapist. I asked him what I should do if my ride was ever late? He didn’t want to talk about it. I pressed him. He refused, said it wasn’t an issue. One day, my appointment was for 11:00. 10:55 my ride still wasnt there, and it was 20 minutes away. I tried to call the doctor, no answer. Finally, at 11:05, my ride shows up, and I wave him away, what’s the point, right? My doctor calls me at 11:07 screaming at me that we could have had 15 productive minutes. Physician, heal thyself! Anyway, I’m not doing the Wheel-Trans thing at the moment, but it’s an awesome service when you’re out a lot and those cabs are adding up. I’m just a bit fragile, in pain, and lucky to have options at the moment.

Cabs

Cabs are how I get around, probably the most. If husband isn’t taking me somewhere, and these days he almost always is, I’m going by cab. The cab drivers in this city, for the most part, are
3oeduroxib6lo9rxgcexcellent. I’ve only had a problem with a few. Problems include the driver who stopped for me, found out I wasn’t going far enough for his liking, and pretended he was there to pick up a specific fare, after I was sitting in the back seat! Do you know how hard it is to untangle yourself from the back seat some days? That was one of those days! Mr. VITAMIN I referred to in a previous post, and the guy who was bringing me home from the hospital who drove so recklessly I thought we were going to have to go back!

Where am I going?

It sounds like I’m going places, doesn’t it? As of Friday, I haven’t left my house in a month. I have the dentist on Monday, it’s in the neighbourhood, my Botox treatment on Tuesday, and then rest. I’d like for the family to see Hidden Figures, since I live with 3 math, science, and space nerds, but it might have to come out on DVD. Next month I’d like to go to the Bite Lip Lab and get custom lipsticks with my friends. I have two different sets of friends who want to go. I have to choose places wisely. No huge staircases, must have places to sit, be a short walk from decamp to door, not too loud or bright, or smelly, not too far from home, must be a quick exit, have accessible washrooms or we are going to be less than two hours, and not too close to home, either. (Too close and I can’t get a cab. I still can’t walk it yet).

Doctor’s appointments and makeup. Sums up my life perfectly.

Medical Treatment

3oriemeuudrbgrmn2w1

Of course, I’m not just lying in bed in pain. I’m working with doctors trying to get me to the point where I’m stable. Since we’ve been chasing ‘stable’ for 15 years, it’s quite elusive. We are defining stable as a long-term situation where I’m able to do many of the things I want to do, such as socialize two or three times a week, sit downstairs with my family on a regular basis, and not be in incredible pain when I’m at rest. Also, being intimate with my husband would be nice.

Medication

When I was first established to have a chronic pain condition, I was put on opioids. One of the features common in EDSers is they often process medications quickly. I am one. So this 4 hour medication was processed in 3 hours for me. I needed to take it 4 times per day. What I didn’t find out until years later, in speaking with a therapist, I was likely going through a mini withdrawal every three hours. The pain was better, but I developed an awful online shopping habit in order to cope. I didn’t go into huge debt or anything, but it could have been better spent.

I’m now on a cocktail of medications that work very well. I won’t go into specifics, because that’s so individual, and my husband is my main pill manager, so I probably couldn’t even tell you if I wanted to! Included are an antidepressant, known to help treat chronic pain, a longer acting opioid, I have sleeping pills to use in an emergency, and have Marijuana based pills. I have cut down my opioid intake to a third of what I was taking in the beginning, and always look to cutting it down further.

Marijuana

I take three forms of Marijuana. I’m sorry to report it isn’t as fun as it seems. I take the pill form, and of course I don’t remember the name right now. I take the oils at night. My supplier uses olive oil, so it tastes like salad dressing made with paint chips. It doesn’t linger, though. I also vape in the morning.  I vape a high CBD low THC blend, so it’s closer to the stuff they give to the kids with seizures.  Closer, but not exactly. It has a little more THC, which I find helps the pain, but it’s not enough to make me stupid. None of this medication makes me “high” or “stupid” which is nice. The only time I’m out of it is when I’m in pain.

Eating Plan

I have had a horrible year with my stomach, but over the past two years, I’ve managed to lose 100 lbs. Part of it is because I’ve been sick and had terrible stomach pain. Based on this, my gastroenterologist suggested I try a FODMAP diet plan to deal with the stomach pain. This plan isn’t cute. I didn’t believe it would work,  either. I’ve tried eating plans for endometriosis before, no luck. But this was for a month, Andrew was going to help, it wasn’t THAT different from my eating now, and my stomach really hurt…. so FODMAP entails:

  • Gluten-free
  • Lactose free
  • No garlic
  • No onions
  • No glucose fructose
  • Low fruit

The Gluten-free is because of the sugars involved, the sugars produced are off limits. And because I’m low motility, little fibre, few vegetables because of allergies. I am working with a nutritionist,  because this does look kind of bleak.

After the first month I was amazed. I felt so much better. My joints felt better. I had significantly less pain than before. Even in my fingers! I have since spoken with others who have had similar success. I need to meet with the nutritionist to see if there’s stuff I can add back. I was feeling so good, I didnt mind. I was naughty over Christmas and am paying for it. As predicted, my stomach still hurts, but the rest is not bad.  Except my back…

Botox Injections

For ten years, I’ve been getting 400 iu of Botox every ten months in my torso and thighs. I’ve been also getting it in my head for migraines for about a year, 200 iu. It has been injected various times at the Wasser Pain Clinic at Mt. Sinai in Toronto, Canada. The torso injections are known as trigger point injections, as the doctor feels around your body, and when he or she hits a tender spot, you scream, and they mark, then inject that spot. You receive about 4 injections per needle, for about 50 to 60 injections. The Botox is mixed with lidocaine,  for some immediate relief. Unfortunately, as was predicted, my back hasn’t been taking well to the last two injections, and they may not work for me much longer. I see much doctor in ten days, we shall discuss.
A couple of things about this treatment, my physiotherapist is from England and has said this treatment has not proven effective for them there. I do not know how effective it is here, either, I know it worked for me…I could be a freak. At my last visit, my doctor mentioned he couldn’t start this treatment on someone now, that no insurance would accept it.

Therapy

Doctors seem to really like to know I’m in therapy, because then they don’t have to be responsible for my ‘depression’ if I cry. I really don’t understand why so many doctors will seem surprised and uncomfortable if you shed a couple of tears when they say something really quite upsetting to you. For example, my gastroenterologist looked positively shocked tears slid down my face when he said “You’re don’t really have much of a life, do you?” We’ll, not when I’ve been desperately I’ll for the past six months, lost 40 lbs in the last 3 weeks and am tired and scared. Based on these tears he pronounced me, “Profoundly depressed,” and dismissed me. I certainly have situational depression, which is being depressed about your situation, but I’m working on it as best I can. Trying to be positive.

Braces

When I go to bed, I can be braced head to toe if I want! I have ankle braces, knee braces, wrist braces, finger braces, arm splints, a mouth guard, my CPAP machine, and my satin lined caps to protect my curls. I promise you, I look ravishing!

Vitamins

I don’t necessarily believe in so-called vitamin therapy, but I do take a series of vitamins. I take potassium, known as vitamin k, to help with some of the deficiencies that occur, based on my medication profile. I spoke to my pharmacist for this advice.i take vitamin E to help with dryness. The same reason I take flaxseed, general nutrition, and because I’m on so much medication that causes drying, it’s helping somewhat. My eye doctor even commented it’s likely helping! I take melatonin to help me stay asleep at night. I found there’s only one brand and style that helps. I take a multivitamin and vitamin D supplements, because those with EDS often have poor nutrient absorption. I take them rather haphazardly, so I don’t have too many nutrients. I had a high B12 count over the summer, am trying to watch this count, not exacerbate it. I also take a cranberry juice pill. My husband claims my pharmacist recommended this as a way to help defeat the raging full body yeast problems I was having. I wasn’t so sure, but they aren’t expensive,  and I’ve not had a problem since I’ve started, except for some slight problems under my bust during the summer (totally expected, not as bad as previous summers)

So that’s basically what I’m doing at the moment. When I’m feeling a bit better, I will add more to my agenda. Pretty soon I will let you know what I’ve tried! 😀

If you liked this post, please let me know and click like below. Make a comment, tell me what you think, below also! Know how I can improve? Comments page!

Distraction

As I was mentioning in the wee hours of this morning, I tend to

  • Get distracted by shiny things
  • Go on tangents
  • Go on rants

Since I share a birthday with Dennis Miller, the third one should not come as a surprise.  Due to my personality,  the rants tend to be fairly loud, but good-natured.

I don’t know if this is a product of

  • Brain changes or neuroplasticity (I SMRT)
  • The wonderful medications I’m on
  • EDS in general
  • Aging (I R Old as you can probably guess…)
  • Adrenaline spikes that happen with EDS

For example, in my middle of the night post, I was very tired and couldn’t remember if I was to use the term lying, as in lying down or if that was the term for evading the truth and lying down was spelled lieing (when you are distracted by pain, sometimes silly things pop into your mind, you just think through it.) And then I thought well, is it supposed to be laying down? Well, no, because that would be like laying an egg. (See what I mean?) If you don’t pull yourself back to task you can be gone for hours. It’s like thinking through molasses, or running through water.

Sometimes I will go to answer an email and find myself writing a review of hand lotion 20 minutes later, it’s like- well, I’m still on the computer, OK.  Good start. Other times I’ve found myself cleaning out junk drawers, or painting my nails.

So, I’m tired this morning, for having a protracted sleep having drifted off around 3 am. Oh, everyone is tired! Yes, I hear that. When you add this on top of chronic fatigue,  it’s unreal. I’m feeling almost incoherent. The effort it takes to put together a sentence…I have to really focus. It’s important to me, though.

I have an appointment with my therapist this morning.  She’s wonderful and works with me by phone. My doctors are happier when I have a therapist, I get fewer accusations of being depressed this way. I will explore that phenomenon very soon.

Setting up this blog was hard work, but fun. I haven’t been able to work in years, and my migraines have been bad, but, piece by piece I did it! It took a long time-about 7x as long as it would have in my normal brain, but that’s gone! I will keep tweaking as we go, let me know what you like.