Painsomnia, Regrets.

I shared an article with my husband about one of the Teen Mom’s from MTV getting ‘butt and vaginoplasty’ procedures on-camera, grinning away. And he’s been making hilarious jokes all night. No body shaming, mostly about him going along to get his butt tightened when he’s not being relaxed about things.

http://www.ibtimes.co.uk/teen-mom-farrah-abraham-blasted-posting-private-photos-instagram-do-you-have-no-shame-1633533

This was the story, if you want to read it. I hope they aren’t tightening her uterus. Just, no.

 

I’m feeling sort of low. I’m reminded of so many of the accomplishments of my friends, and I had to cut so many things short. I was reminded the other day of a friend I’d had for 15 years, and was insanely jealous. I had no clue about this. That is the part I feel terrible about. I suppose I don’t spend time with people I don’t like, and if I do, I don’t blame them. But she envied, I’ve been told, my marriage, my babies, and my job with a bank. Oh, and house with another person’s income it was easier. I envied her ability to work and do something besides sleep. Her relationship with her parents, her baking skills, her bilingualism. I didn’t get to say those things because I felt it was weird to be nice sometimes. She would accuse me of buttering her up to ask her a favour.

I regret that I couldn’t finish university. I don’t know how I could have made this work. My dad was pretty mentally ill when I turned 18, and he wanted me out of the house. He wanted me out forever so he could have my mom to himself, but that’s his thing. So when I turned 18, I was out. I had no where to go. I ended up staying with my boyfriend, who was 10 years older. He was living in a different province. He was then transferred to a third province. I tried to enroll in school and apply for a loan, and was rejected. Apparently, my parents made too much money, and should be funding my education. So, I’m screwed, unless I’m married or 25. Whelp, there hadn’t been too much interest so far, my parents had convinced me I’d be lucky to get married at all. And this guy was willing, we got married in Vegas in November of 1989. Same Day as Bruce and Demi.

There are some people out there who absolutely loathe me for this. One even called me out in the middle of my 25 year high school reunion. Where were they, though, when I had no other place to stay? When I could have used maybe a decent boyfriend? Nah, I was too ugly. Nobody has actually come forward and told me why they are upset or hurt. I’m actually completely bewildered. I have not come up with any sort of explanation for this. I wasn’t even that close to these people. People are always looking for an excuse to hate you. It’s like a rubics cube.

Yes, my first marriage was brutal is a lot of ways, but I did learn a lot, also. Whatever the case, it led me to my current husband. The place I am meant to be. Sometimes you need to go through hell to get to heaven.

I hear other rumors, though. I hear whispers about my “perfect family” and “privilege” that got me a house in downtown Toronto.

Hey, there. I hear your whispers. I see your glances.

I have some privilege. But don’t you dare forget I worked three jobs for seven years, two of those years while going to school, when I did dip down to two. I have been working since the age of 12, securing them and transporting myself.

I have endured five laparoscopic surgeries while working, most of them taking less than three days off for recovery, instead using weekends to recover. All while in increasing pain, exhaustion, being told I was fat, work out more, eat less, and get over it.

Divorced the first guy, married the second, kids were supposed to fix the endometriosis. Had 2. Got sicker. Finally had to concede working.  Sister in law asks while pregnant with #2 “Why would you have another baby if you can’t look after the one you have?” Because we put my daughter in daycare after I tried to go back to work and failed. Nice. My husband is an incompetent child rearer? Thanks. On LTD.

We desperately wanted a third child, but decided we could not afford financially nor emotionally to support one.

My children, both with Autism, act well in public, but are becoming troublesome in private. School refusal has been a problem with the boy, and I don’t know how next year will be.

So if anyone wants to trade lives with me remember, I envy those who:

  • Can get up and go for a walk
  • Can eat some food, whatever they like without stomach cramps
  • Can get up and go somewhere
  • Can stay awake for more than 3 hours
  • anytime but midnight
  • Don’t hurt all the time
  • Can have some fun
  • Can go dancing
  • let’s go shopping!

 

I’m really okay, my husband is the best. He is so sweet to me. I wouldn’t travel this journey without him.

I suppose someone else (me) being content is really tough for people to figure out. True no drama.

 

Right now I’m in so much pain I can’t sleep.

  • Gastroparesis means my bowels are full and rumbly. They’ll be like this and cramps for a while
  • My neck is screaming in pain
  • I have something across the back of my head that hurts. Long ago head injury?
  • I may have a cyst on my ovary, occasional cramping
  • My back hurts
  • jaw pain from head troubles

Actually, not a bad evening. Going to try to sleep.

 

Disability Stories – My Mother-in-Law

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Let me preface this by saying I know my Mother-in-law isn’t truly evil. She just doesn’t think things through before expressing herself some  all the time. My husband had a fairly revelatory discussion with her the other day (Sunday, actually, beginning at 8:30) where we discovered she often thinks she’s being funny! Imagine!

My Mother-in-law is older than I think of most moms, in that she’s in her mid eighties. Her husband is nine years younger, and quite a hunk! Portends well for my husband’s aging process! Not only is my Father-in-law handsome, he is sweet as spun sugar. 💙

Now my Mother-in-law, I do believe, generally has the best of intentions, generally. I first met her after the breakup of our mutual relationships and when now-husband and I had just finished the ‘should we or shouldn’t we?’ dance. I think everyone knew this relationship was significant.  She served dinner on warmed plates, so fancy. She was trying so hard. It was sweet. It was my first trip to the Danforth. On Logan Avenue. Gorgeous neighbourhood. I’ve lived in Toronto twenty-five years, I’ve been on the east side maybe fifty times. Anyway, they were lovely. She ran around before I arrived removing photos of his ex-girlfriend. It had only been three or four months. They had been living together. They bought a house. (Oh, that really makes me sound like a home wrecker, but on reflection I do believe we were set up. It took me years to realize).

Things went well. July of 1999 husband and I moved into the top two floors of a house off of St Clair West near Oakwood. At this point I was dealing with just Endometriosis…except my thyroid started acting up shortly after we moved in together. I went from 190 lbs to 220 lbs in 5 weeks. Then another 20 lbs came on over the summer. By October of 1999 I was 240 lbs. Thyroid medication was the only thing that stopped the gain. We have no idea what happened.

Prior to this, my now-husband had drifted away from his family. Because of me being such a lovey-dovey nosy person who doesn’t know when to leave well enough alone, I declared this ‘strange’ (I was 29 and stupid) and encouraged him to get in touch with his perfectly lovely seeming family! His ex-girlfriend was much like my ex-husband. Very artistic, loves to be centre of attention, not really good with details. Which means both of our houses looked like trash heaps unless he at his or I at mine did something about it.

This is the scenario when I, a former go-getter have my first child, which was actually a fairly traumatic birth, involving a c-section, yanking, tugging, more yanking, THE DOCTOR GETTING ON THE TABLE AND STRADDLING ME, and finally her birth. Still no idea about my EDS diagnosis at the time. After this, I have a year off, nine months of which is pretty good, and the pain returns with a vengeance. (Things are hazy about this time, two young kids, pain, migraines, under medicated). I got my daughter into daycare and tried to go back to work, but I couldn’t.  I had my daughter in daycare in February, and by October I was pregnant. It was the only time I felt okay. He was born in June of 04. I had to put him into daycare as soon as I could. He was too active and my pain returned too quickly. Yet as soon as she heard about my pregnancy, my sister-in-law asked me “why would you get pregnant again when you can’t look after the baby you have?” I was gobsmacked. I muttered something like accidents happen, although he was no accident whatsoever. I assume she was referring to our decision to keep our daughter in daycare while I was not working. Not that it’s anyone’s business, but she really enjoyed daycare, and it was good for her. Plus, what’s wrong with her Dad? Is he a potato all of a sudden?

After both kids were here, both c-sections (where I actually got online V-bac counselling from Michelle Duggar, who was on baby 7?, hand to God!)  I was in a lot of pain. Here is where my Mother-in-law comes to my rescue? No…here is where my Mother-in-law sees I am not working. Probably assumes I have no income.* Sees I am slacking off on my household chores (My husband has this terrible habit when he is talking on the phone of saying “I’m doing the laundry” even if it is I who was doing the laundry.) And starts encouraging my husband to take the children and find a new wife. He is certainly young and good-looking enough, she assures him. (Why would he tell me this? My husband has Aspergers, it probably didn’t even occur to him I would see this as anything but ridiculous. He is incredibly sensitive, and has grown so much, 15 years ago he was a bit green, and we had babies).

To complicate things, husband decided to take our co-sleeping sprogs to sleep in the other room so I could deal with this chronic pain that was cropping up. Only he didn’t say that. He just left. I was sure it was because I was revolting. Or, he had the children he really wanted. He could go off happily now. My DNA is so Oooh speshul.  Haha! I was so crazy partly,

I had been prescribed opioids by my GP for pain. Whee! No not Whee! Like high. Actually, I was joking with a friend who has something… that lung thing… we’d be ‘lucky’ enough to be roofed at a club, I can see it. Picture it: *Hmmm, I’m actually not feeling too bad right now!* Lol! Back to the story: Hydrocodone, I think? Anyway, it was fine, I took my dose just fine, every four hours on the dot. HOWEVER patients with EDS tend to metabolize medication faster than the general population, and I am one of them. I am done with a 4 hour medication at 3 hours. Cold medication, pain medication, everything. So for almost a year, I found out fairly recently, I was spending that hour essentially going through withdrawal, how many times a day? That must have been the worst time of my life. No, I honestly can’t think of a worse time. Should there be an equation for this? My time with my ex was awful but it was extended, this was concentrated awful.

I know my husband stuck up for me to his mother, but she just wasn’t having it. I think it bothered me so much because I sort of agreed with her. Things got so much better when I got to a proper pain clinic and on to long-acting pain medication. Then life started turning around. We had a housekeeper for ages, but he could only do so much. Our kids have Autism, our daughter needs to see everything, she spreads her stuff all over the living room.

Hmmm. This was supposed to be about my Mother-in-law, and I guess it was, but it was a bit more winding than intended. 😄

I will have to follow-up with part 2, with some quips.

 

Have a good day, Zebras 😘

 

 

*My in laws’ 50th was last year, and my husband and I paid for the party, and his brother and wife bought them something amazing or something, they have exceptional taste, anyway, remember now, my husband and I have been married – it’s our 16th anniversary in October. Because my husband and I work for banks, we have TONS of accounts. Also because I’m stuck in bed, my husband has a private account his cheque goes into, then he transfers it to wherever, I don’t follow how it works. But he needed an account and couldn’t wait for me to feel well enough to get to the bank. Well, when he paid or reimbursed his Dad for party expenses, he wrote a cheque on his private account, not thinking of the optics. Well, he’s received two or three thank you cards and gifts, but they don’t mention me or the kids. I don’t know if I should bring my bank statements showing my pension and my disability payments, leave them lying around? Nah, they’d probably match up the account numbers. Ouch.

Seriously?

Just trust me Go here and read this article. This guy thinks women can glue their labia together and it will stop menstrual flow. Uh huh.

Painsomnia got me. I’m so annoyed that I can’t really talk to my doctor about this until I see him in June. I see him before this for my Botox treatment on April 4th. But we don’t have the time to lay it on the line and really go through it all. Maybe I should bottom line everything in a post, even for myself. I have a couple of options, as I see it.

  • I can douse myself with sleeping pills, take my breakthrough pills, sacrifice my steadiness for a bit of loopiness, see if that helps.
  • Or I can call his nurse, who is kind of brusque and see what she advises.
  • Suck it up and quit complaining
  • Whine and complain until I’m friendless and on my own.

I don’t like number four very much, and I’m not very good at holding my tongue, so three is out. I think I will start with one, and progress to two. I took a breakthrough dose of my pain meds and it did nothing, since I am allowed two I will try another, it’s been over three hours! I suspect the nurse would suggest the breakthrough meds first, anyway.

My back hurts so much I can’t sleep. I just want to cry. I don’t even know what to do to make it stop. I keep thinking heat, but that makes me wince. I can’t even be still.

Since sleep is useless, I’m going to work on a pain inventory page for the blog. I think it will help.

I hope sleep is not eluding you, fellow zebras! (Respecting time zone differences of course!) 😘

 

Microaggressions and Ehlers-Danlos Syndrome

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What are microaggressions? They are those questions, statements and comments, that might not be too annoying if they happened once, maybe twice. Unfortunately, they seem to happen often. These are the ones that seem to happen most to me. I’d love to hear yours!

When I’m well enough to travel on my own,  I often travel by cab. I’ll explain more on this in another post. Nearly every time I step into the cab, the question after,”Where to, Miss?” is nearly always,”Were you in a car accident?”! Of course, I was not in a car accident, I used to explain that I have a chronic pain condition. For a while I told them I had Ehlers-Danlos Syndrome, you can guess how well that went over! No one had heard of it, of course. So now I just say either I have a connective tissue disorder, or should genetic condition. That usually gets me through.

The next thing that comes up is always medical advice. So many cab drivers have pain, I get it. They know. They have great advice. I have learned so much wisdom from these men and women. But so help me, if one more gives me an exercise plan to follow, I just might scream! It always starts with a You know you just have to… However, I will be working with a very qualified physiotherapist when I am well enough to get there on a regular basis, and his assessment last time I saw him was he couldn’t make me stronger, there would be no ‘working out’ but I needed to work on my prioception (sense of self in space) and stamina, and he can help with that. Taking advice from someone unlicensed whom I don’t even know, would not only be dangerous,  it would be irresponsible.

Vitamins and herbs are what comes next, always! I haven’t been bothered by this one too often, but hoo, boy! When it happens! I take some vitamins for overall health. A multivitamin, because EDSers notoriously do not absorb vitamins and minerals very images-2-1. I take Flaxseed and Vitamin E for dry skin, and general benefit, and I take dried cranberry because my pharmacist recommended this as a way to help defeat the raging full body yeast problems I was having trouble with for the year prior. They went away, and it’s not expensive, so, okay! Obviously,  I’m not completely opposed. But when someone says it’s going to ‘cure’ me? Or I have to take hundreds of dollars worth? Then I have a problem.  One time I had hailed as cab, it was at night, the driver had given me a sales pitch, I had demurred, but we were about three blocks from my house, it’s all residential now. Remember I can barely walk, it’s cold, it’s going to be tough for me go get another cab if I stop this ride. He shoves the phone at me. He had been talking to someone in another language.  It turns out it’s some guy who is trying to set me up with a monthly recurring supply of vitamins and wants my credit card number! Yikes! I couldn’t say I didn’t have one, as I needed to pay with it. Good thing my husband was waiting up for me and noticed it was taking too long for me to get out of the cab, and came outside to help. They backed off when they saw him. He’s tall at 6’5″ but not hugely imposing. You bet I complained!

The next one I don’t get so often anymore. Pity. That’s: “You’re too young to use a cane!”. I’m sure I look younger than I am because I’ve been cooped up in my bedroom for years and haven’t been in the sun. A stellar argument for sunscreen if I’ve ever heard one! But I’m sure people mean I’m not 80 yet. I sure feel 80, although that’s pretty ageist because how is 80 supposed to feel? Is that old? I know people who have been old sticks in the mud at 20 and people who have the flutter of youth into their senior years. It’s all mindset. I don’t see what a mobility aid has to do with it, I’m just trying not to fall down.

The one I hate the most is,”You’re so lucky your husband hasn’t left you!”! And if I’m extra good they tack on: “yet!”! Isn’t that lovely? I love people. I know they mean this in a sincere manner. There are so many stories of people getting ill and having a spouse not being able to cope. It’s tragic. My husband is exceptional as a human being, whether I was ill or not, and you know, I wasn’t totally healthy when we got together! *GASP* I KNOW! It’s okay! Do you need to sit down? This might be shocking. Ready? He seems to like me for me. Yes. Not for what I can do for him. We’re a partnership, a family. Weird, right? I get it. We’ve actually talked about splitting up. I’ve had some really bad days and encouraged him to run for the hills. He realizes he would have sole custody of the kids. He is not going anywhere. 😃

My favourite, “You should probably lose some weight.”! I’ve heard this from so many doctors. How do they think I got fat in the first place? If I could move, I would be exercising, walking, moving! It’s not like I’ve always been fat, as a teen I had anorexia and was scarily underweight. (I still have anorexia, I am in recovery). It starts with the medication. Every single one puts weight on, it seems. Then motility issues, and then add in I’m pooping every 3 weeks. I finally started with MyFitnessPal to see how much I was actually overeating, and I was averaging 900 kcal a day. Not good. Not one of those doctors offered any solutions beyond the order of ‘lose weight’. I finally asked one doctor why? And she said it might help relieve the pressure on your joints so you will feel better. I asked the next doctor about this theory and he laughed. He asked me if I felt better when I was thinner. I said no, not really. It didn’t seem to make much difference.  He said, “don’t bother, then, you have enough on your plate!”. I sometimes suspect doctors offer this when they don’t have any other solution. That way, the onus is still on you to perform. It sure beats the therapist I had who interrupted a tearful story of mine to ask if I’d ever considered gastric bypass surgery.  I was 275 lbs. I hit 300 lbs in 2015, unfortunately.  I felt awful. I started again with MyFitnessPal, made sure I had enough food at 1600 kcals and my weight started to drop. 40 lbs in 2015. Got sick in 2016 and lost 60 more. Just weighed myself for the first time since Christmas.  I have been eating a lot more because I haven’t been as nauseated, so I suspected a gain of 15 lbs, I was hoping not more than 20! I lost 2! I’m so shocked! I’m now 206. I still want to lose 30 more as I’ve mentioned,  but I’m not desperate to do so, in case I get sick again like I did last year when I lost 40 lbs in 3 weeks. I’m 5’8″. Sorry for the tangent, anorexia takes over sometimes. Give me any point in my history,  basically,  and I can tell you what I weighed.

The woman at the eye doctor who won’t let me sit down. She is a lovely lady, but every time I walk in she stands between me and the seats and wants to chat. She won’t let me sit down no matter how many times the first thing I say to her is, “I need to sit down right now, my back is killing me!”! Sigh.

The most fun I have is with the people who I chat with at doctor’s offices and labs and goings who ask what is wrong with you. I’ve had both very wonderful and very weird conversations with people. The best was the woman who asked what was wrong with me, and I told her I had something called Ehlers-Danlos Danlos Syndrome,  it is a problem with my collagen and connective tissue. “Oh, I have that!” She says. She was older than I am and didn’t seem to be in much pain so I was curious. We chatted for a while, I come to find out the silent she is referring to is high cholesterol! But it’s really similar, in some ways…?

Hope you’re having a great day! If you like it, please give me a like, comment, or help me improve! 😍

Challenges of EDS

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Some of the challenges I face in my daily battle with Ehlers-Danlos syndrome are major. Some are minor, some are humorous, some aren’t. Let’s dive in.

Bathing and Grooming

Some days are better than others, but if I’m having a rough week, getting a bath is a tough prospect. Getting two is a dream! Part of it is having the energy. Part is coordinating with someone to be around in case I need help getting in or out of the tub (or need an ambulance if I fall). Let’s be real. I can slip pretty easily, and having my back seize up or my knee go out would not surprise me.

My husband spent an hour combing knots and tangles out of my hair today. My hair is super curly, and it gets so tangly. I wear a satin lined cap, usually, to sleep in, but it still will tangle and my arms can only go so long. My husband is amazing.

Digestive Issues

A common problem associated with Ehlers-Danlos syndrome is motility issues. This is where food sits in the digestive tract longer than usual. I  have serious issues with this. This, plus the medication results in serious constipation. Once every three weeks or so.  Unless I have diarrhea.  One thing for sure is the constant nausea. The medical marijuana helps with that, though. I don’t get the munchies, which is nice.

Tracking Medications

One thing I found very difficult was tracking my medicine, and when doctors asked what I was taking, I just looked blankly. My husband started making spreadsheets of my meds, with dosage, prescribing doctor, reason, and date prescribed to bring with me. I started bringing them to all new doctor appointments, and they were so helpful! Just print off a copy, they go right into your chart.

Dry Mouth and Skin

I try to drink as much water as I can, and take Vitamin E and Flaxseed. My eye doctor even commented it’s likely helping my eyes to stay slightly moisturized. Biotene makes dry mouth toothpaste, mouthwash, breath spray, but skip the mints.

I’m constantly trying to combat my dry skin, and I find I have to exfoliate a lot! I seem to have a lot of epidermis. I use Korean spa towels, and Caudalie Divine Oil on my body, and try an essence, serum and oil on my face when I have the energy.

Chronic Fatigue

I’m down to one major thing a day. Some days that’s a bath. Usually I have 3 hours of activity in me. Not hyper activity, slow activity. I need naps. I am really proud of the days I can stay up all day. I am having more of those, as I’m moving less. It’s a toss-up. I can move around for a short time, or I can be stationary and be available for a much longer time.

Weight Gain

Between not having the spoons to move too much and the medications I was on, it was really easy to put on a whole bunch of weight in 2009 to 2014. In 2009, I started getting sick from my gallery bladder and I couldn’t move. I was quickly confined to bed by the end of the year. While I was eating normal meals, about 1700 kcals a day, I was rapidly gaining weight. It was just too much for my non-activity. By end of 2014 I was 300 lbs.

Weight Loss

Starting in 2015, I decided to join MyFitnessPal and start watching what I eat. Towards the end of the year,  I was down 40 lbs. In 2016 I lost another 10, and then in April, 40 in 3 weeks. It took me a while to recover from being so ill. We don’t know what was going on,  but by the end of 2016, I had lost 100 lbs. I want to lose 30 more. I’m not pushing too hard, because I don’t mind some extra. In case I have another incident like April’s.

Losing Friends

Sometimes friends get it, sometimes they don’t. Sometimes they are okay with your terms, sometimes not. There’s always a negotiation when you have a disability, and sometimes it works out and sometimes it doesn’t, and sometimes things change in the middle. One thing,  I am often jealous of the things I haven’t been able to do.

Lack of Sleep

Adrenaline rushes or things on my mind will often keep me up at night.

Fun

A post on Instagram asked: What is the last thing you did for fun? And I couldn’t answer. I need to get more fun in my life and be more creative.

Chasing Dreams

I’ve had to give up many things I love. Crocheting is too painful now. Nail art was my passion, but my hands hurt too much now to continue. I love to read, but I can’t concentrate long enough to do it much anymore. I miss all these things. But I’m still trying to do them little by little or in my own way.

Staying Positive

It seems quite difficult to remain positive with all of this going on, but it can be done! It needs to be. My focus needs to remain on being as healthy and well as possible. Taking medication on time, eating well-balanced meals, following my food plan, admitting when I’m tired, staying away from negative people, not watching the evening news, maintaining relationships with my family, and practicing good self-care.

 

Medical Treatment

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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! 😀

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Pain Flare-ups

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By yesterday afternoon I was in quite a lot of pain. I’m not sure what the trigger was. It wasn’t one of the usual ones, like over exertion, or injury, but the weather is kind of strange with rain and snow or sleet, and warm then cold temperatures, and one of the treatments I get is starting to wear off. I haven’t been sleeping all that well, unusual for me, another major blessing! I’m certain all play a part.

When I have a pain flare-up, the most affected is always my back. My back is in spasm, and it hurts to walk or stand for any length of time. It hurts even when lying down. My abdominal muscles are also in pain, likely from keeping them stiff, keeping my back from moving.  My right hip is always worse than my left. It aches, crying for attention.  My knees are fairly quiet until I move. Then they pop and snap into place, and ache for a while. When I walk they are a little wobbly. I need to go slowly to make sure they are going to take my weight before I step onto that foot. If not, I tumble. My elbows are sore, right more than left. Wrists, right more than left, fingers on my right hand… but I’m going to rest in a bit.

What also hurts is my pubic bone. This started in pregnancy with my daughter. I had a mild case of symphysis pubis, hardly measurable, but oh my goodness, is the pain real! I had to go on bed rest. My daughter is 15 in 3 weeks and I still have days where I can barely walk. I feel as I’ve been kicked by someone wearing steel-toed boots. Still. A knee pillow helps. Also helps align my back and hips for better rest.

I do not have a migraine, and my neck does not hurt, so I will count those two blessings on the score! side.

On days like this I feel very nauseated. I try to stay off of social media as much as possible because I don’t often communicate my thoughts the way I want to, and they come out jumbled. I’m very afraid of inadvertently hurting someone. I tend to cry randomly. I’m very sensitive. I try to be extra good to myself. Sometimes these days feel like they will never pass, and you start to worry that things will never get better, but they always do. Eventually.

Napping, reading, if I am able (because sometimes I have no concentration at all), trying to keep my nutrition up, pampering with face masks, and ensuring I remember my medications, as well as scouring Netflix for good documentaries are usually how I spend these days. I’m almost always low energy, or medicated to the point I’m tired. Unfortunately.

I just need to keep on swimming!