Rough Night.

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I have been having horrible abdominal cramps the past couple of weeks. I was diagnosed with Endometriosis in 1989. It was originally thought to be the source of my pain. I have been fine since I had my kids, mostly due to the Mirena. I’m on number 3, and am on year 2 I believe, so nothing should be wrong. I haven’t had any spotting. In fact, it had been working miraculously in helping me with cramps.

Over the past week, I’ve had discharge as if I was ovulating, (that’s one thing about chronic illness, being really in tune with your body. I knew exactly when I was ovulating, which made pregnancy a snap). The cramps were slightly menstrual-like, but more sustained ovulation-like. Mittelsmertz, if you will. Yesterday I was so distracted I even forgot my medication all day!

I went to bed early, I was generally uncomfortable. My head is hurting at the back. Around midnight I woke up screaming with intense abdominal cramping. Did I have a cyst burst? It was just on the right side. The pain lasted almost 20 minutes with me just babble scream-moaning for that time. It eventually subsided, but I’m aching intensely this morning. It could be that I caught my ovary or twisted it a bit. Or a bit of adhesions ripping. It could be anything. Well, not anything. I don’t think it’s actually a hedgehog on a rampage. It just feels like it.

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This was under the gifs for Endometriosis.  I thought it completely appropriate.

I had a horrible time trying to sleep last night. I just couldn’t. I took extra meds, but it didn’t help. I read some junk on my tablet.

I have my makeup in stacked bins beside my bed. At 10:51 pm. The past two nights, a whole row has fallen over. 😮 spooky! I know my family has been in rough shape because we’ve all been in bed before 9:30 both nights.

I’m curled up in a ball, trying to amuse myself. I’m focusing on taking my meds, having some fun, and taking things a bit easy. I don’t know quite how this will play out. My gynecologist is part of the pain clinic, for the endo part anyway. I don’t have one for other stuff.

The BOTOX shots help a ton with any cramping or discomfort. I had forgotten how much pain this can cause.

My husband might just swaddle me and leave me at the emergency room. 🤣 Like he was giving up a newborn. What should the note say? Tag you’re It? She’s your problem now?  😈

My husband had no idea what to do, so he did nothing. I’m not exactly thrilled. We should probably have a discussion.

Another issue with my doctor being absent is he made a lovely compound for me, well, ordered, and I’m now gingerly using it. I don’t know if I can get it again. It has gabapentin and ketamine in it, it’s a lotion, and it’s unbelievable. It fixed my abdomen earlier. I don’t have another doctor for this.

It was upsetting when I mentioned my doctor situation on Facebook, people started speculating he was ‘up on charges’ that is such dangerous speculation. I took the post down. I wasn’t strong enough at the time. I’m still worried about his health.

Anyway, I need to rest. More soon.

Oh! I’m down to 188. This was the 20 lbs I was keeping for emergencies, remember? Heh. Oh well. Eating is hard. Nausea is pervasive. Heartburn is so often. Even though I’m on the max dose of medicine for it. I just rechecked the BMI charts, and I need to lose 15 more lbs and I’m normal weight. That blows my mind. I was certain I’d never lose this weight. I suppose I like being slim. I’m not so certain I like the attention from men. Wait. I like the respectful attention. I don’t like the disrespectful attention.

Ok, bit of rest now. 😊.

Gastroparesis Awareness

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Lovely, I was just reading a post on Twitter from the EDS Association reminding us it was Gastroparesis Awareness month. I replied I was pretty sure I had this, was awaiting diagnosis. Someone snarkily replied it was dangerous to diagnose yourself from the internet, and did I have tests scheduled. I replied I was trying, I had other priorities, which got, if you’re so sick, you should have your priorities in order. My retort was about needing my energy to bug my pain doc about my neurologist at the moment, but under normal circumstances, definitely.

It’s such a shame there are so many scammers out there we have to be suspicious of everyone. That really sucks.

I got partway into my makeup and just ran out of steam. I couldn’t go on. I’m dead. I hate using that analogy, but my lips are pale and I’m drained. I feel awful.

Anyway, back to gastroparesis. I have almost all the symptoms. It involves very slow digestion. I will eat at lunch, still be full at dinner. If you overeat, sometimes you vomit the remainder up. I am not doing this much anymore. I have a very small appetite, am constantly, well mostly, nauseated. My stomach is often bloated. Constipation, cramps, constant heartburn. I can’t think of much else.

My current diet consists of:

  • My morning coffee
  • Oatmeal for breakfast (the bad kind)
  • Homemade nachos with corn tortilla chips, melted lactose free cheese and low fat sour cream
  • glucose-fructose free iced tea
  • gluten free pizza
  • Chicken Tacos
  • Chicka Chicka Boom popcorn
  • Rice Crackers
  • Homemade hamburgers
  • Homemade hash browns
  • Chocolate (This is not necessarily FODMAP friendly)
  • Chocolate chip pancakes with syrup

 

  • I have been munching on lightly salted chips the past couple of days, as it quells the nausea. It worked during my pregnancies, my first one I lost 30 lbs! I was still 30 lbs heavier than now! 😮

This is all the food I would eat in a normal week. Other things we have in the house I can have are:

  • Lactose free ice cream
  • sorbet
  • Rice pasta with garlic and onion free sauce (gag)
  • Husband has a mini storeroom of chocolate in the basement, apparently.  For me.

I love my chocolate and popcorn, but I don’t miss my food. Since I started feeling better for the most part while on FODMAP, I don’t miss eating tons of things. I’m not often craving foods the way I used to, though I sometimes do get hungry. It takes a long time, though.

I hope I can get a gastroenterologist soon. I’m trying to think, and there just aren’t any other foods I eat. 🤔 Nope.

 

Friday Evening, Before the Long Weekend

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My tee from the Ehlers Danlos Society Fundraiser is here! I think there is another one on now. Go to Booster.com. There is also a Zebra Strong campaign that looks interesting. I’m waiting for my shirt from that one.

There have been thunderstorms all week here, and the humidity has been awful. My bedroom is hot as hell.

My head pain has been bad this week. Still haven’t heard from this neurologist. I’m three weeks away from my Botox injections, so I will follow up with my pain guy. Unless I end up in the hospital, first. I’m having terrible abdominal pain. It feels cyst-like. I’m curled up in a ball again. Glad we have the new tv. Netflix is easier to watch. They also have True Stories of the ER, which I love. The acting is awful.

Eating is awful again. My digestive system is super slow. I have lunch, and now it’s 7:15 and I’m still not hungry. Another hour maybe. Really, my neck hurts so much, I can’t think about it at all. The nausea comes and goes. I’d rather go back to sleep. But that’s no life.

20170804_185439Please ignore the clutter, but that’s my makeup stash in the background. I bought this awesome gadget from Kikkerland. (Kikkerland.com) it’s a tablet holder, and I currently have my timer on it. It attaches with a clip, and has an adjustable arm. It’s only about $20. I bought this after video messaging with my cousin and finding it so difficult to hold my tablet. Now I can watch tv shows, Netflix, listen to podcasts, and it also takes fantastic photos.

Another neat gadget I found, also at Kikkerland, is a 20170804_185357phone holder. I was forever losing my phone, and this way I always know where it is, I can find it easily, read and reply easily, and it was only $15! I’m delighted. This also attaches with a clip and has an adjustable arm.  Don’t laugh at my BlackBerry. Husband is in IT security and insisted on BlackBerry. Also, mess. As you can see, I use the IKEA metal rolly cart for a bedside table, and it’s amazing!

This weekend I plan to do some serious rest and relaxation. My XL elbow brace arrived, I need to do some serious skincare, my skin is in need of masking, I need some extra rest, and I have extra correspondence I need to catch up on.

I’m trying to get organized in many aspects of my life, however I need some assistance. Getting this assistance is almost as tough as doing it on my own.  Sigh.

 

Onwards. ❤

 

 

I’m Sick

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I guess I’m sick, I think. It’s tough to tell anymore. Last night the nausea got so intense I couldn’t even take my medication.  I just swallowed some Gravol and eventually went to sleep. I only refunded a little bit. I’ve been sitting around watching lame TV, as I can’t be arsed to find something great. Actually, Family Guy and John Tucker Must Die isn’t bad. I watched it yesterday.

I just popped two more Gravol, as my husband came to check on me, he hand fed me. How pathetic am I? Today is even chocolate chip pancakes day.

My neck and back are incredibly sore. I want to vape, but I’m too nauseated, I feel if I move an inch, I will be in big trouble. We keep an old cooking pot as a barf bucket, so it doesn’t matter if I can’t move fast. But I hate it. I should be used to it. Not only am I a puker in general, I have a past rife with bulimia.

I’ve been shopping. I’m bored and hungry and feeling sorry for myself. I just bought some Unicorn Snot! 😄 it’s glitter gel for face, body and hair, but also a lip gloss formula. I’m excited. That will be fun to play with. I bought some loose pigment and mixing medium from MAC, I don’t shop there much, and an eyeliner from Sephora.  I purchased a couple of cute boxes from Amazon, too. I have great toys to play with, now I just need the energy to play.

My husband has been on the phone most of the weekend in meetings. He’s working so hard.

I am scared because my nausea has been fluctuating with my neck and head pain. I had a weird experience this morning where I was asleep, I think, but I experienced these bright flashes of light, excruciating pain and a sound like an explosion, and then the pain would subside. It happened twice, maybe three times? And I either fell asleep or into a deeper sleep. It was horrible. But was it a dream?

I don’t know what to do anymore. I don’t think the hospital is the right place. I don’t think they can take the time to figure this out. Although the can ensure its not an urgent issue, I suppose. My GP would send me somewhere, and ask me for suggestions, so he’s really not much good. My pain doctor I’m seeing in a month, so I just need to hang on. The Clinic is supposed to be on the radar, but I haven’t heard from them. My options I’m considering are calling Tele health and asking for advice, although they usually send you to hospital.  Then, I could call my pain doctor or the evil social worker and ask for advice. I could at least have assurance I’ve been referred.

I should have a bath, although I just don’t feel like it. I can’t now.

Be well, Zebras! 😷

Worn Out – Part Two

I wanted to add some things to my earlier post. Some caveats, per se.

It’s certainly not everyone who contacts me on Facebook messenger or interacts with me that has been a problem or has been selling to me, let me be clear. I have made a number of new friends with people I have in common with others, and it’s been a lot of fun getting to know people. I’ve had several message me and want to chat, and I welcome that. Approximately 75% have been respectful. 5% have been perverts. 5% have been ‘you need to do this…’ types, and 15% are sales.

I do not mind being approached by people I have known for even a few months. They are generally nice, they converse, they continue to speak to me.

But when I’m added to a Facebook group about healthy weight loss through diet and exercise, or the best entertaining recipes..it’s like you don’t even know me. I’ve been added to seven Lula roe groups and I don’t think those things fit me. They are not pajamas or people clothes. Nix.

I suppose it’s just added to my long week that every second day someone was asking for something. Thursday, I think, some lady I had just recently friended was asking how many wraps or shakes I wanted. Since I’ve been subsisting on cookies and almonds this week, none, thanks! 😢😢😢 I had never spoken to her before, I didn’t answer and she hasn’t been back. What I think bothers me is there doesn’t seem to be any interest in pursuing any other relationship. I’m slightly put off by that. Of course, I’m deleting and blocking so they can’t re-add me, but, it’s so…defeating.

It’s not as many people as it feels like, it’s just been a few in a week. And when they disappear because I’m not a customer, before I get rid of them, I feel rejected. There have been a lot of friends who do check in and stick around and I do know this. I’ve been in the wrong place at the wrong time all week.

I often play into that goofy, ditzy, on-her-meds stereotype because it’s easier than calling people out on their bullshit.

I put a care package together for my Mom, and I was so excited, it took a lot to collect everything and mail it. It got to her, and I was so busy with the kids I didn’t get to call. Finally I did, and it was all complaints. The package had sat in the box for a week. The chocolate almonds I sent were stale. (I had some, I thought they were good) then she said she probably doesn’t like chocolate. Oh, hey! Have I heard from my sister? 😔 I don’t expect everybody to be happy all of the time. But every single person this week seemed to be having a bad day. And I was so disappointed I had let her down. I had ripped apart the bedroom to find the kids’ school pictures, sourced a special wash cloth for her, and when my friend’s son was selling chocolate almonds, grabbed an extra two boxes and didn’t even eat them! I know, it had nothing to do with that. I know that in my head. She doesn’t have an easy life. And when I tried to do something good, I fail.

Sometimes I wonder if people think I’m okay to treat however because they assume I don’t have any real responsibilities. 

I’m so sorry I’m so cranky. My neck is really sore. My pain was down around a 5 all last week and now it’s at a 8.5. My knees are clicking, my elbows. I can’t get warm. Husband has the children all week, so I can hide from the world. I’ve been shopping. Ugh. I’m over my budget, and I’m finding things I ‘need’. The only thing I think I could do for extra money is cam girl. I know I have a limit to my earnings. I’d be surprised if I could drum up enough interest in…I don’t know what I’d do? Blog? Put on makeup live? Yay? Is there a Fetish…oh rule 34…let perverts watch me sleep? 😐 maybe I will cut down on shopping…. yes I think that is the better decision all around.

I am aching so much right now. I am going to start the breakthrough medication I’m prescribed tomorrow, I think. I will have to order my cannabis in the morning. On a whim, I decided to check to see if I could order, and I can. No email as promised. I am ticked. I was spoken to like I was asking to get my new teapot a day early, and was firmly told Monday, be patient and I would get an email, but here it is Sunday, no email, I’m too tired and on meds to do it right, and here it is. How long has it been there?

I have a headache that feels under my scalp, my neck hurts, I can’t warm up. My joints are so achy. My wrists and elbows. My jaw. My pubic bone my right abdominal side, any movement means I want to cry out. This week is about rejuvenation and healing and rest. And trying to eat more than cookies. And almonds. No other food wants to stay down. We order our pizza on Sundays, gluten-free, lactose free, and I enjoyed it. But i had to lie down for an hour. Everything I ate, every bite today, I needed to lie down. So, I will be having fun with that. Plus, online shopping to a minimum. Or none at all. Except for the Urban Decay launch on the 23rd.

I’m going to try to keep my voice from sounding simply snarky and give a reason for that anger, if that makes sense?  I’m a bit reflective these days. In the morning when I’m up and medicated, it may help as well. I may have some time to relax and zen. ☺ It’s difficult to convey your true inner self when you’re in pain. Maslow’s hierarchy and all that.

I’m crying from pain and frustration, but going to try to sleep.

Goal for tomorrow is painting my toenails! 😄

Have a gorgeous moment today, Zebras. Just one. 😘

 

Adventures in FODMAP

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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

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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! 😘