Misery Inventory 😭

giphy1Please laugh at my misery. 😁 I am having a pretty lousy day.

It actually started last night. I did my makeup for a friend’s birthday, (once again, just ask) and I was just tuckered. I fell asleep at 5? And asked husband to wake me at 8-ish. He claims he couldn’t wake me. This could be true, as once I was in hospital, and the doctor actually picked me up and shook me, I could feel her do that, I felt myself trying to wake up, but I couldn’t. So I sleep deeply. I have CPAP, don’t worry.

So I woke up this morning, just barely, and my head hurrrrrts. My neck is just aching. I can’t follow a thing. I’ve tried four documentaries and they make no sense. I have to write everything down or it’s gone. I did buy a bunch of journals over the weekend this was so much fun, though.

My stomach is killing me too, though. I have heartburn, unusual. I’m so careful, and have been not cheating. I guess the chips are out. Lightly salted, too spicy. 😐 I am so very nauseated and yet am hungry. Plus my stomach hurts. Just the actual physical area of my stomach hurts. I was wearing a bralettes and it hurt, so I had to take it off. Another day where I can’t wear clothes, they are too much pressure. Physical pressure. My nightgowns are too close around my throat, though I know they aren’t. Any seam hurts. My fuzzy blanket is all I can handle. We’ve had honest discussions with the kids why mommy doesn’t wear clothes sometimes, and why that is a problem in society and we have to give her privacy.

Anyway, my stomach is acting up, but I did have a BM today, which is fantastic! 😀 I used to have to have shots that would reverse the opioids I was on so I could go. It was not a fun time.

But in addition to this, I’m having endometriosis-related cramps, and I can’t figure out why. I don’t know if my body is adjusting to the weight loss, which seems to be stable for now, around 195. Everything hurts for now, and I can never remember what I’m supposed to do.

I finally got it straight with husband. I’m supposed to take marijuana oil and then vape, but I don’t have the strength to vape. I don’t know if I’m just being lazy? Oh, hell no. I am not a lazy person. I really can’t. I don’t think it will do what I need it to do for my neck, anyway. I would really love a bath, but I can’t muster myself to get in there.

The kids are well amused. Daughter is downstairs doing whatever it is she does, and boy is playing the new Nintendo Switch we bought for Husband’s birthday next month. We thought we should get it early and have some time to play it. It arrived Friday, so the boys rushed through their chores, and husband and I had a long discussion about whether he really did ask me to order Zelda or not. I swear he didn’t. I am clear as day on this, but is it just my memory? But I would have no memory of the incident altogether, right? And he forgets to give me the phone every morning so I have to go crawl for it and hurt myself.

So, husband is calling the hospital every couple of days with no response. This is what you get with top doctors. Arrogance.

I have a ton of shopping due to arrive today. At least that should distract. And once I get that bath!

Progress!

giphy13

Finally, some good news! After another hellish treatment with Botox, (actually it’s not the needles that hurt, it’s feeling around for the trigger points to inject, because even gentle pressure on areas of my body really hurts). And I need to tell you the story of my day, still, because it was funny, but I’m still worn out.

My doctor gave me a cream for my head pain and said I can actually use it anywhere. It’s a bizarre mixture of ketamine, gabapentin, and other stuff. So far it’s helping to a certain degree. It may take time, though. I tried it first on Wednesday, and was immediately sick. But then the pain subsided slowly.

I tried it on my stomach last night and this morning. This morning, I was immediately ill. I may need to ramp up even slower. I don’t know quite how, except one part at a time. You only use a half a pea size amount per small area. My entire abdomen takes 1.5 pea sized amounts.

So, I guess this stuff is pretty strong? Or I’m just sick by coincidence, which is possible, because I hurt to be touched and my husband was rubbing some of the sorest spots on my body. Gently, but, sore nonetheless.

Just a bit about my doctor appointment from Tuesday: after we did the treatment, we had a chance to talk, and my doctor is concerned about my head and neck pain. He is sending me to a neurologist, even though he is one himself, he doesn’t have time to deal with this, his hands are full. The neurologist will consider a nerve block, likely, but will investigate the source of the pain.

My husband asked him what we should do in future with pain like this, and he shrugged without shrugging. It very much depends on my health, the danger, circumstances, everything, really. Am I in pain? What do I need? What am I looking for? So I asked if I should have gone for my head. He told me he won’t know until they find out what’s wrong. There ya go.

Last bit of gossip is we discussed my gastroenterology problem. I am now down close to 120 lbs. There is no way at nearly 47 years old I should be bedridden and losing two lbs a week. It makes no sense, metabolically. At about 193 lbs now, I’m only 25 lbs overweight. That blows my mind. I’m glad I’m getting something out of this. Um. I hope it stops somewhere. Anyway, my doctor agreed, and said this should be another priority. I then looked at him and said, this isn’t making sense. This doesn’t sound like just EDS. Something else is going on here. He was silent. He went back to writing scripts. He then said, I think you’re right. I haven’t seen anything like this, it’s progressing too fast to be just EDS.

Sleeping is easier.

Have a stellar day, Zebras! 😘

My Super Hyped Doctor Appointment!

giphy8

As is apparent, I survived my doctor appointment yesterday. I had some mixed feelings about it, and needed time to process, but on the whole, I think I’m much better today. Emotionally. Physically, too. Let’s start at the very beginning where my happy alarm goes off at 6:00 am, my husband brings me coffee, and I start to look dazed.

First thing I grab my medication. The second thing I do in the morning when I have time is vape. I wasn’t going to have time today, so I should have used my marijuana oil. Vaping takes an hour and a half, start to finish. My therapist keeps nagging me because she thinks that’s too long for medicine to be consumed, it should go faster. Nagging me- she mentioned it twice. It still bugs me. I can’t control this. I didn’t remember my other medication – the marijuana oil – until we were partway there, but perhaps it helped with my sensitivity? Showing them how sensitive I truly am? I don’t know, I probably just screwed myself.

We dropped my son off at school, and proceeded to the hospital where we hung out. The doctor was only a half hour late, but we were treated to a bevy of overly perfumed women (really, don’t wear perfume in a hospital, it doesn’t matter when last you bathed) dramatically emphasizing how they were in the most pain of anybody! So Loud! I felt sorry for each woman in their own way. Each needed something they weren’t getting. And then I looked around and felt sorry for all of us, as I realized everybody had something they weren’t getting. And then the doctor called us in.

New, young, gorgeous, doctor this time. She had read all three volumes of my file and asked for update on the situation. We told her about the head pain. The neck pain, nausea, dizziness, having to lie down. The stomach pain. Just on the surface of the stomach. Did I throw a cyst recently? My pubic bone. My hands hurt, my joints hurt, my knees hurt, Things are not going well.

We discussed the effect of the pain, how it feels, quite in-depth. She wanted to examine me. This was going to be the toughest part.

I changed into my formal hospital wear, and my husband held my hands as she did a surprisingly gentle upper abdominal and lower abdominal palpitation exam. I didn’t scream, only major flinching around my lower right quadrant. It was incredibly sore. She did back off right away. It didn’t hurt so much then, but ten minutes later was …wow!

On to the pelvic. She did some sensitivity testing around my ladybits, and a modified pelvic exam. I’m usually screaming during pelvic exams, but there was no speculum involved. She said I was something that amounts to ‘not letting the horse into the barn’ (my words) and I should probably get back to pelvic therapy. I was teasing my husband that she was trying to tell me I was frigid, but he didn’t know what that meant. I had to explain. Cute.

Naturally, by this time, I’m not feeling too fantastic. We start talking about the weird headaches I was having. My husband volunteers that it was like I have these vertebrae sticking out, and she goes to touch them..

Bad idea!

This send a searing shock of pain up through my neck, up to my head and I cry out in pain. I think I scared everyone,  including myself. The doctor runs out of the room, embarrassed, leaving me to get it together.  I’m scream-crying, trying to hold on until the initial shock of having the top of my head blown off subsides.

I finally calm, husband helps me get dressed, and we wait.

The doctor comes back, apologizing, but saying the demonstration really helped. Even though she’s sorry.

After some back and forth with the Old doctor, where he threatens to cut my medicine down, because I’m on an awful lot, and sometimes too much isn’t good either, which feels like the new ‘lose weight’. I’m not on THAT much medication, and I adjust accordingly. I wish he’d discuss it with me. My husband is dismissive of this comment, but I am not. I feel like it’s a warning, but I’m just a paranoid girl.

I feel like he’s saying “if you bother me too much, you’re getting less medication”. Which is insulting, because hello, not a drugseeker, and we haven’t even discussed the problem yet. Fer chrissakes. It especially rankles me because I’ve been sucking it up for most of my life, pretending I’m okay, pretending I can get by, pretending it doesn’t hurt as much as it does.

After that bombshell, I just kept a straight face, and he continued his best recommendation was to continue on with the Botox treatment as planned, because it does so well for such a large part of me, we will try for a referral to a person who may do nerve blocks or x-rays of my c-spine to deal with the headaches. In the meantime, he is prescribing a compounded cream for my headaches that he said he thinks might help. I can’t remember what’s in it, but one of the things is ketamine. He said I could probably use it other places, too. Last night I was thinking about my abdomen. The pain is about an inch deep, if that. This may be perfect. Here’s hoping! It would be nice to not have to take something that has to traverse my system to work. (I know this enters my bloodstream, but it doesn’t need to go to the edges of the skin to be where it needs to be? But the brain… yeah, right, it’s been a long week)

So, we are just waiting for the magical compound to show up. I don’t know how my hair is going to like it,  but thank God for Olaplex.

The more I think about his recommendations, the more I think he is right, and I think he made good suggestions and I see how they are beneficial and applicable. The cream may be just the thing on my abdomen, as the pain only goes about a half an inch down, I’m excited to try.

We had briefly spoken about referrals to specialists, but in light of the EDS clinic referral, which is underway, I don’t know what will come of that. Does it make more sense, if that is imminent, to see their in-house people?

My memory is improving ever so slightly.  I feel like I’m at least over whatever cold or flu thing I had. I feel so much better than I did!

I spent the rest of the afternoon just flaking out and surfing the Internet and trying to stay comfortable. This morning was pretty much back to normal.

Have a great day, Zebras! 😘

 

PS. Just FYI, the reason I don’t use my family’s names in my blog is simple. I thought it might be too confusing for someone coming in in the middle to figure out which one was the husband, the son, or the daughter. I thought this would be simpler. Also, it gives them some anonymity when we go viral. 😁 I may slip up occasionally.  It’s not a tragedy to me. We aren’t in hiding.

So Hungry!

giphy7

I am so darned hungry and so darned nauseated at the same time! I really want a hot meal. I want French fries smothered in disgusting gravy and bacon and sour cream. Yesss.

I didn’t receive quite as much pain relief today, but enough that I was able to play makeup for a while. I had fun, and my back didn’t hurt much. My neck was killing me, though. It’s funny, pain is like an onion. You clear one ache up and there’s something lurking underneath. I think it’s our brain’s way of coping. I don’t think we can cope with it all at once, so our brain stacks the pain. I don’t know, it’s just a theory I have.

I didn’t have a nap today, surprisingly. I’m ready to drop now, but I pushed through today.

Today is pretty boring. I’m feeling pretty boring. I’m out of energy. I don’t have the spoons. I can barely move my fingers. My stomach is growling noisily.

I even started a book the other day. It’s good, I’m enjoying it. I miss reading.

Hope you’re having a good day!

Happy spring, Zebra friends! 😙

 

 

Do Cookies Have Brains?

giphy3

OK,  so the reason I’m asking is that I feel like I’m eating a lot of cookies, but I also feel like a zombie. So this only really makes sense if Cookies have brains.

I am feeling so tired right now, but I want to play with my makeup. I have a plan, and I’m not going to give up, even though I keep snapping  my neck awake every few minutes. This exhaustion is just rude. I tend to eat cookies when I’m this tired because I think the sugar will help me. It just makes me fat. What I really need is a nap. I really should just sleep because I’m just going to be frustrated. 😔 I’m so upset. I want to do things, but I’m so tired almost all of the time. I keep having to postpone things.  I will try and get up at 3:00 and see if I can do it then.

I’m also having problems with bedsores. It’s getting annoying. I’m going to have to start wearing a bra again. That’s upsetting, because it binds my stomach. It hurts. I have had terrible heartburn and nausea has worsened lately. I’m eating even less nutritious food and more cookies. Everything hurts my stomach.

Okay, I’m going to nap now. The weather is cold. It was -25C overnight. Rest time.

Be good to yourself fellow Zebra! 😘

Adventures in FODMAP

3oeduhgxuh8mirqlrg

My adventure with the FODMAP eating plan really started in January in 2016. Well, that’s where it gets interesting, anyway. Technically, it would start at conception, when my genes decided I would have the stomach I have, but that’s reaching. I should mention in 2015 I had lost 40 lbs to go from 305 to 265. Let’s start in January of 2016

January/February 2016

I am having trouble swallowing. I find I have a bit of a ‘click’ in my throat, and food and medicine is beginning to stick. I visit my doctor, who refers me to an Ear, Nose, Throat Doctor (ENT). He is concerned, and books me for a barium swallow, at which they tack on a marshmallow test to test something else, but apparently this is significant.

The results came back indicating there were no issues with my throat per se,  but it was extremely damaged by acid, and I should see a gastroenterologist.

End of February: 250 lbs.

March/April 2016

Bloodwork needed to be done in order to see the gastroenterologist, so I did some with my GP, an found my B12 and white blood cells were high. Off to the Oncologist-Hematologist. After more tests and exams, which were painful, he said he may have to do a bone marrow biopsy, but no, thank goodness, he didn’t. He decided I just had a weird white blood cell count and took me off B12 supplements. Actually, all vitamins for a while.

For three weeks in April, I became violently ill. I was vomiting, had diarrhea, it was like day one of the flu for three solid weeks. I lost thirty pounds that month. I could barely eat. It was horrific. I was afraid I would die. I took Gravol continually. It was a nightmare. Eventually it subsided.

End of April: 220 lbs.

May/June 2016

The sharp stomach pain started in my lower abdomen and stomach. I was in constant pain and nausea. I ate what I could tolerate. What kept me going. The doctor made an appointment for an endoscopy with biopsy for the end of August.

End of June: 220 lbs.

July/August/September 2016

Feeling pretty awful but stable through July and August. I try to tell my doctor I can’t eat much and ask if it’s a problem. He tells me not to worry, I’ll get fat again as soon as they solve my stomach problems.  I have the biopsy. I swear I feel the snip.

End of September  215 lbs.

October 2016

My appointment to get my results in the October appointment were interesting. The gastroenterologist told me my stomach had an unusual texture. He asked about my life, I told him about how the pain keeps me mostly in my room. He told me that my life sounded pathetic, which made me cry. At that point he told me I needed to see a therapist because I was obviously depressed.

I’m not certain how the subject changed, but he asked me if I had problems with gas and bloating. As a matter of fact, I do! Much of it is because I eat too fast. I used to be teased for eating too slow, and eating hurts me, I’d rather not. The gastroenterologist then, almost as an afterthought, suggested I go see the Nutritionist across the hall and try the FODMAP eating plan and see if it works, just for a month, and then work to add foods back.

So I did. I made an appointment with her and my husband, as he does all the cooking and food shopping.

Why Don’t I Call it a Diet?

I suffered from eating disorders as a young woman, and I am nervous about the word. Also, I am not trying to lose weight, it is a plan for me, not a temporary measure. I need to be as serious about it as I should be.

 

What is FODMAP?

FODMAP is designed to help decrease your intake of fructose glucose, which, when you have slow motility like I do, will ferment in your intestines and create gas and bloating.

The best resource I’ve found for explanation has been at Diet vs. Disease.

 

From Diet vs Disease:

FODMAP described by co-creator Sue Shepard) stands for:

  • Fermentable– meaning they are broken down (fermented) by bacteria in the large bowel
  • Oligosaccharides– “oligo” means “few” and “saccharide” means sugar. These molecules are made up of individual sugars joined together in a chain
  • Disaccharides– “di” means two. This is a double sugar molecule
  • Monosaccharides– “mono” means single. This is a single sugar molecule
  • And Polyols– these are sugar alcohols (however, they don’t lead to intoxication!)

Let’s stick with the term FODMAPs shall we?

Those saccharides and polyols are short-chain carbohydrates that, if poorly digested, ferment in the lower part of your large intestine (bowel). This fermentation process draws in water and produces carbon dioxide, hydrogen, and/or methane gas that causes the intestine to stretch and expand.

The result is strong pain, bloating, visible abdominal distension and other related symptoms (1).

FODMAPS in the bowel

FODMAP Food Lists

Diet vs. Disease is an excellent resource. DietvsDisease.org

low-fodmap-diet-food-list-for-shopping-colorful

I look at a wonderful chart like this and it makes me depressed. Great list, huh? Lots to eat, still! I’m allergic to much of it. I have anaphylaxis to peanuts, as does my husband, he is allergic to tree nuts, so we don’t keep them in the house. I am allergic to fish, paprika, beets, bananas, pork (but can have bacon, small mercies). I am not to have soy, as it is thought to aggravate endometriosis.

  • Because of the peanut allergy, I’m tangentially allergic to legumes and peas, they give me eczema when I eat them. They are off limits as per my allergist. Alcohol hurts my stomach. I’m not a huge drinker anyway, but I enjoy it occasionally.

There are many foods I do not like. Squash, raw tomatoes, oranges, turnip, most things with a strong taste.

So What Do You Eat?

Breakfast

  • Monday through Friday – Coffee with Lactose free milk and sugar with Dinosaur Egg Oatmeal
  • Saturday – Coffee with lactose free milk and sugar with two hash browns and six pieces of bacon, of which I get two. (My boy steals the rest, it’s a game)
  • Sunday – Coffee with lactose free milk and sugar with two homemade chocolate chip pancakes and light syrup, and two pieces of bacon. I munch on breakfast through the early afternoon.

Lunch

  • Monday through Friday – 1 oz of lactose free cheese on two crisp bread crackers
  • Saturday – Homemade nachos; 2 oz lactose free cheese melted on some plain tortilla chips, with 2 oz dairy free sour cream.
  • Sunday – Leisurely finishing breakfast

Dinner

  • Sunday – order gluten-free pizza. 2 slices (small)
  • Monday – 2 slices leftover pizza (small)
  • Tuesday – Homemade chicken fajita night with dairy free sour cream and corn tortillas (2 small fajitas)
  • Wednesday – Pasta night. I hate this new pasta and no garlic, so I eat my last two slices of pizza and my husband grumbles about making different meals for every person.
  • Thursday – 1/2 Turkey burger with bacon and Lactose free cheese .25 oz. I started to have this with a homemade bun, they were fabulous, but my husband would make the patties so darn thick, I can’t get my mouth around them, so he stopped the buns for a while.
  • Friday – Chicken Fajita night – Homemade and so yummy! I have 2 small ones.
  • Saturday – I have the other half of my turkey burger

UPDATE: My husband has informed me he does more than grumbles, he actually complains, and the burger I consume is beef. 😉

Snacks and Dessert

Dessert will happen 4 days out of seven, usually. I have a stash of sweets hanging around. They aren’t always the best for FODMAP, but sometimes the pain demands it.

  • Chapman’s ice cream lactose free in caramel ribbon
  • Fruit sorbet
  • Glutino double cream cookies
  • Glutino vanilla cream cookies
  • Panda licorice
  • A wee bit of chocolate

 

Results

I started FODMAP in October of 2016. I started to see results immediately when I slowed my eating. When I changed my eating, it took about three weeks. I noticed I started to feel better. In fact, I felt better than I had in a long time.

I spoke to the nutritionist and she was somewhat supportive. I had an appointment with her in November, and have been trying to make a follow-up appointment ever since. When I contacted her in December to ask for some guidance about sticking to the plan when I had to attend a function at a restaurant, she replied “try to stick to the plan”. Ever so helpful.

Current Status

As FODMAP is supposed to be temporary, I have been seeking guidance as to how to add foods back. I am still waiting for an appointment with the nutritionist, I will send her another email. The pain in my stomach is not subsided, but it is less acute than it was. I should go back to see the gastroenterologist,  but I’m not excited to. The stabbing pain in my stomach is kind of insistent.

I have experimented with the occasional pop here, and bit of garlic there, and had blindingly painful results. I nearly went to meet my maker (painwise) after a bout with orange chicken a couple of weeks ago, so I’ve become resolute.

Current weight: 207 lbs.

Conclusion

FODMAP has helped with many of my symptoms, and it wasn’t that big of change in my eating habits, except for going gluten and lactose free.  Once those substitutions were made, I felt many of my aches and pains diminish. Now only my intense pain remains. How long can I remain on this plan? That is up to time, my stomach, and my nutritionist to decide.

I would be pleased if I lost another 30 lbs, but I am not actively trying to do so, but the nausea I have daily often prevents me from taking in my daily goal of 800 kcals. This is a low number, I acknowledge, however, I continue to be bedridden and hope on more days than not to take in more like 1300 kcals. Should I have another month like I did last April, I think it’s wise to keep some extra meat on my bones. I still suffer from near-constant nausea, I don’t know if there is a solution for that.

 

Have a lovely day, Zebra friends! 😘

 

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?