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.

 

New Hair!

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I forgot to show off my new Hair! It’s usually curly, but we put in a treatment to reduce the frizz and tangles. It’s better if the blowout stays for a couple of days.

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My family went out and bought me an aromatherapy diffuser. This one fits in your cup holder. Because I don’t go out, it’s small enough that I can manage it. I can pick it up to fill it. It’s pretty powerful! We have bigger ones, but this one is more manageable.

I’m still feeling worn out, but I’m looking toward the weekend for some rest. I can push until then. Gently. I’m not going to exhaust myself, though. Just makeup playing 😁.

Sunday’s Scoop

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Does anyone else do this when they are sitting or lying with their legs straight?  I’ve done this all my life, and wonder if other people do it, too. I don’t know if it’s EDS related, but it makes people laugh.

I’m starting to be mildly concerned about my head. The headaches are becoming persistent and my face constantly hurts. The pain in my head isn’t bad, though, just constant. My short term memory is getting worse, and I’m sleeping more and more. I’m so tired. I wonder if it’s the heat, although husband did some tinkering last night and it’s much better in here.

My husband is by no means lazy, he is so overwhelmed things aren’t being taken care of that need doing. I finally insisted we have a night where he comes to bed at 7:00 so I can talk to him. Otherwise I don’t get to see him. He comes to bed at 9. Closer to 9:30, and I’m not keen on bothering him when he’s fighting to stay awake until 10:30 so he can have spent time with me.

I do try to take the burden, but there’s only so much I can do. I’m trying to organize things on my side, and that’s helping, so there’s that.

I have a heart test this week. Is that the Eeg or EKG? I can never remember. It’s the last test before I am on the list for the EDS clinic. Six month wait. I hope they can speed it up.

Ok, I need to move.

Be well!

I’m Here… Sorry!

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It was pretty darn rude of me to just drop out of sight like that, but I’ve had a hell of a week.

My son has had phenomenal anxiety. He is enrolled in a day camp, and he can barely attend. He struggles so much. I had a long chat with his counsellor today, so I feel he is getting some good help. Being a teen is tough. I didn’t like it either.

EDIT: I spoke to his professional counsellor for therapy, not his camp counsellor, he actually did that himself.

We have permission for a wheelchair. A temporary one. My doctor is hoping we can still do something with my knees, and we hope I can walk part time.

My hands, wrists, and fingers have been awful. They hurt so much. I’m not sure what to do. Resting didn’t help. I keep being told to wait for the clinic but it could be 6 months away.

I want to sleep all the time. I’m so tired. I’m trying to be awake, but I start falling asleep like I am now.  So I have to go.

I’ll try again soon.  Taking vitamins.  Maybe it will pass.

😗

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! 😄

 

Irreplaceable Me

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How many days has it been? A million? Ugh.

I’m so bored. All I can do is sleep and sometimes take medicine. I’m way off my routine, I’m not sure what I’ve taken on time this week. Actually,  I’ve mostly missed my 3:00 pills and my mmj. That should be it. My 6:00 a couple of times. But my husband has been getting home earlier and checks now.

I’m seeing the doctor tomorrow! Husband and I are making our list tonight of what we have been seeing. I’m not going to let him bully me into hoping things will get better. This has been consistent pain now for months. I don’t know that I necessarily need more pain medication, but I likely need more investigation into what is going on. This ‘it’s just eds/endo/fibro’ stuff isn’t going to work anymore. When I’m losing use of my hands, when I can’t eat for several days (usually when I have the flu I can take something in without the digestive problems I’ve had. I woke up this morning to find myself on the toilet, so, yeah, ew.).  I want to get this neck thing straightened out -literally! My knees, these damn headaches, the list goes on.

The positive side of things is that I’m reminded how valuable I am to my family. My son turns 13 on Sunday, and my husband has been admirably juggling everything, however the gifts had not been bought. That’s usually my domain. When I have a flare-up, I can still often get things done. When I’m completely out of commission and can do nothing but sleep? Then we have a problem. Then we start to see how not having Mommy around affects us.

I woke up yesterday evening around 7:00 to find my son hovering at the foot of my bed. He hasn’t been diagnosed, but he is definitely on the autism spectrum, and he was doing a little dance of impatience with hand flapping as he waited for me to wake up. As soon as I opened my eyes he dove into my bed and exclaimed he was waiting for me to wake up because he wanted a snuggle. He settled right in beside me, and we watched TV.  It was lovely.

It’s good to be needed.

These are the sleep shorts I bought at Old Navy. I bought 2 pair 20170606_201735of shorts, I think I have 3 complete pajama sets, as they have camisole to go with them, a romper, a strappy top, and a pair of socks all with the zebra pattern on them.  I will take a photo one day when I’m wearing them, once they are all washed up! It’s nice to buy from the regular size part of the store. There are so many choices!  I’m almost redoing my wardrobe. I have so many clothes to get rid of. I don’t ever want to get big again. But we can’t always control that stuff, can we? My biggest things are not eating when I’d rather be sleeping, because sometimes I just eat to keep myself awake, and keeping an eye on my sugar intake. When I eat too much sugar, my weight skyrockets. When I stop, my weight drops at 2 lbs per week. Magic.

OK.  I’m tuckered out. I have lots to do for tomorrow.

Have a beautiful day, Zebra friends! 😘

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. 😘