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.

 

I am a Staaaaaaar!

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I adore Bob’s Burgers.  So much that Archer is weird now.

I have been neglectful of my blogging responsibilities. I am sorry. I have been spending all weekend rearranging my living space with the assistance of my family. We are not quite done, because they move like turtles. Well, they did until we straightened some things out. I like to give orders 1 through 10 and have them completed. Now go away and leave me until I need you again or work on task X. We were working as I was giving an instruction and waiting for it. Ugh. No. We sorted through a ton of my makeup and skincare. I feel well organized, because if I can argue my way into a couple more steps, I will be quite independent.

I was going to do my blog about beauty today, but I decided to nap. I think it was a great idea, because I was out. From 3 until 6. But here I am at 1 am, exhausted and unable to sleep. I don’t understand. How does this keep happening? I try to stay up, I fall asleep out of exhaustion, just a bit, and I’m still awake! I see another sleep study in my future!

I finished my medicine from the infection I had on Saturday. I felt great! Unfortunately, my tongue is starting to tingle and swell and go numb again. My lips a bit, too. My husband is off tomorrow for his eye appointment.  I dont want him to drag me to the doctor. Besides. I don’t want to go. I’ve NEVER had anything weird like this before! I don’t want to be around any more sick people (acutely). (Contagious)

For those who spend much time in bed, how do you configure your kingdom? I wonder if some of my back pain is in my setup, and would love some ideas of what to change!

One of the things I was going to do was pick up a book instead of a tablet at this hour. I sensed my husband was semi awake. He is autistic, what they used to call Aspergers, though not formally diagnosed*. I asked if he had a book light. He asked if I was going to read. I replied exasperated “No, I’m going to perform a colonoscopy!” He shot back he’d get the better flashlight. Thing with him, though, and all autistic people are different, although some are similar, you don’t know if it was sleep mutter, deadpan humour, or strict logic.

*Our daughter was diagnosed in 7th or 8th grade and the staff all commented on how exactly alike they are. Eerily alike. They look alike, they think alike, yeah.

So that’s been what I’ve been up to. Someone else is walking around the house. Probably my daughter, the other Insomniac. She’s so tired during the day, too.  We should make a boys club and a girls club. The girls can sleep all day, the boys can bring us food when they have time, and they can go to work during the day and sleep at night. Our daughter and I will stay up and watch Netflix. 😂. Our son has daycamp. We should cross paths morning and evening. Oh, goodness, can you imagine? Shift Workers do it, and it must be great for those who are dedicated or wired that way. I’m not really sleeping at all, just four to five hours altogether. It’s not helping me fight whatever body is fighting. I spend hours just lying here resting. I used to be a 9 hour a night person. My whole life.

I hope you have a great sleep!

PS   Sorry I sound kind of grouchy. 🤐 I dont want to be around me either! 😄

 

Healing Sleep

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My husband took yesterday and today off to take me to appointments.

I had to go to the doctor on Tuesday, as I didn’t sleep at all on Monday because my tongue hurt too much. It feels like I burned it on hot coffee now, but there were blisters before. Ugh.

Thursday I couldn’t stand I was too weak. I have been pretty much sleeping on and off ever since.

It is pouring rain and thunderstorms, and the dentist is this morning. Let’s see if I can do it.

Cheers!

Oh, Great! *Eyeroll*

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Fantastic development. Along with the neck pain, back pain and dizziness, in there with the nausea and headache, forgetfulness and general discomfort. Alongside the inability to sleep properly and horrible concentration, it seems I’ve caught the cold the kids were passing back and forth.

Fortunately, it’s not too bad, and the CPAP machine I use tends to cut down on the amount of mucous in my nose, so I have fewer breathing issues. I just have a vague sore throat and have this mantle of exhaustion that is unusual. I’m used to being tired, but I’m achy and uncomfortable, I can’t settle. I think that tipped me off that something was off. Also, my nose is booger heaven – ugh.

Lack of quality sleep is not helping my concentration or cognition. I will be watching a show, it will cut to commercial, and I will completely forget what I was watching. I’m having trouble communicating verbally, still, most of all, and paper is only marginally better. (I could be writing my name over and over thinking I’m being brilliant right now!). There is one Simpsons commercial that comes on, and I get so excited, thinking I’m watching the Simpsons. I feel like such an idiot when the commercial ends.

My Mom seems to think my family has terrible luck and absolutely everything happens to us. I admit, it does sound shocking to listen to someone with chronic pain describe flare-ups. I had been silent for years, but I think people ought to know what my life is like. Not in a complaining way, but in a this-is-how-people-live way. People have chronic pain. This is my life. My kids have had quite a few illnesses this year, yet this is my first cold, I think, since being ill at Christmas, with the rest of the world, and it’s mild. My husband has glaucoma issues, cataracts, and arthritis. Both run in his family. My kids have Autism. Sounds like a lot of families I know. Maybe these families aren’t so open, I don’t know.

I should get that nap.

Stay stripey my Zebras! 😘

Friday Morning

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I did manage to get a Beauty blog post up for today. I’m pretty pleased with myself. I took the photos when I had a pain respite one day ( I’m having trouble remembering what day it is) and wrote the copy slowly yesterday morning. I slept from 2:00 PM until 9:00, took my medication, looked at my email and futzed around until 11:00 PM.  Then slept until 6:00 this morning.

This morning so far isn’t too bad. My neck and jaw is pretty sore. The back of my head hurts, and I have a headache starting to wrap around my head. I’m so nauseated and dizzy, too. I have wicked bedspins, it’s like being in a standing MRI, or when I had that barium swallow. Instead of just spinning flat, I actually feel like I spin top ways, then sideways. It’s awful. Better lying down, best on my side. I’m probably sleeping so much just to be away from it.

Things are definitely worse when I sit or stand, and get progressively worse the longer I am upright. 

I do feel much better, though. We are keeping an eye on things, and I am not having as much head pain as I was having. My memory and vision are both not really good either, just a bit hazy, but not alarming. That kind of just woke up feeling.

We’re pretty sure I’m not going to die from this, so we will evaluate on Sunday whether we go to the Emergency Room for evaluation. If I keep improving, then we will just try to be low-key and calm for a few weeks. Otherwise we go.

I took some daytime cold medicine this morning, so maybe this is what’s helping.

I have had so much good support through this. When my brain returns, I will thank you properly and link a great article.

Also, two Facebook friends have admitted to reading my adventures. That matters so much to me, you don’t even know. Sometimes I feel I’m passing through this life unnoticed.

Am I having a mid-life crisis on top of everything? 😁

I’ve found, as an adult, maybe I haven’t been so great at choosing friends. The ones I’ve clung to have kicked me, and the ones I’ve dismissed have shown themselves to be the gems. I’m probably not in a good space and haven’t been for a long time. I don’t think it’s something I can fix at the moment. It’s just a musing.

I need to remember I’m in survival mode at the moment and act accordingly.

I have to put things in perspective. Be selfish. Be okay with being selfish. That may be the toughest part.

I was thinking about it. So what if people think I’m an asshole? For the first time in a long time, I like me. I don’t have the time and energy to explain myself to people who don’t understand or listen anyway. I’ve been exhausting myself trying to be wonderful to people who don’t appreciate it anyway. I’m tired. I’m tired of being nice. I’m tired of sending out care packages and getting a half-hearted ‘thanks’. I’m not a grandmother!

Anyway… rant over. I share a birthday with Dennis Miller. It comes naturally. 😂

OK,  Zebra peeps! I’m going to lie really still, because I just moved my neck and it hurts a lot now. Have a great day!

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! 😷

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My Kid and Me

I can’t believe my daughter is fifteen today! It’s shocking to me. It seems like only yesterday she was an actual infant. Or I was in labour for one of my 96 hours. They were trying to keep her in until she reached her full term state of 37 weeks, but since she was 7lbs 11 oz, I think she was OK.  Remember, I’m 5’8″ and her Dad is 6’5″, albeit skinny, so she comes by it honestly.

Pregnancy was tough. I had lots of aches and pains. I was exhausted. I hadn’t been diagnosed with Ehlers-Danlos syndrome yet, but had severe endometriosis. I had constant ligament pain and nausea. I lost 30 lbs in my first trimester from vomiting. (I had it to lose) I came home every night, had apple juice and cheetos and fell asleep. I craved nachos and orange juice (not together) so much, and I hate orange juice!

I had to go on bed rest for the last two months because I was suffering from symphysis pubis. I tried chiropractic, as they were the only ones offering solutions, but I had no idea about EDSers and chiropractic compatibility. He did get me into orthotics, which was amazing.

During this time, husband and I also got married! We had expected to have trouble conceiving, as doctors predicted, but nope! The plan was to try for six months and then start IVF right after the wedding, but that turned out to be unnecessary.

I started mini contractions on February 4th, every 20 minutes or so. Nothing major. By midday on the 5th we were in the hospital. 5 minutes apart. They needed to stop these contractions so daughter could stay in until 37 weeks or the 7th. So contractions were on and off until the 6th. Then they took me off the medications and let me go home.

The next day, Thursday the 7th, around 9 am, I was back with 5 minute apart contractions. They had me on the monitors for a while, but I wasn’t productive, so they induced me. I started pushing around 5 pm, and for about five hours. No luck. She was stuck. My pelvis, it seems, is quite small. So c-section it is. But I had to wait, because some lady with twins was in there before me. I was unimpressed and started screaming. And puking. The nurses told me to be quiet or I’d scare the other ladies. I said they should be scared! 😂 I calmed down after a bit and we moved to the operating theatre.

They tried to suck my little girl out with a vacuum, no luck. Forceps, no luck. So it was cutting time. I couldn’t feel a thing. My husband, super tall, is by my side, and he can see over the theatre drape. He suddenly turns white. I feel yanking. I ask what’s going on. He says he’ll tell me later. Apparently the doctor had my daughter by the ankles, was standing on the operating table, straddling my body, and yanking her out. Maybe this is why her legs are so long.

I spent a few days in hospital learning to breastfeed. I remember leaving her with my husband for the first time and crying as I went to the hospital lobby to get a magazine. It’s not that I didn’t trust him, but I didn’t trust anyone with my precious bundle. I laughed when he said he felt the same about me!

So, here she is, fifteen. I can’t help but think of all the stuff I got into at fifteen and think she’s far more straightened up than I was. Sensible, smart, caring. I am so proud to be her mother. She is my glory! One of my set of pride and joy. Love this kid.