Good News! I’m alive!

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Well, I suppose that depends on your perspective, but I’m happy I’m starting to feel human again. 🤣 I believe sleeping so much yesterday helped a lot. Usually sleeping so much doesn’t do much to tackle the exhaustion. Things are different when we are dealing with the flu.

It’s funny to me it takes so long to figure out when I have a flu bug or something. I get to feeling worse and worse, and my brain gets less able to figure out what is going on. Being nauseated and tired all the time is nothing new. Dizziness is standard. Flare-up happen. Headaches are constant. At least now I feel like I have one flu instead of two. And why do I get sores on my tongue every time I get sick now? Do not like. (When my daughter was a baby she used to say “Do not like it -push” 😂 she’s so funny).

Two weeks to neurologist appointment. I’m hanging in there. I’m hanging a lot on this. I know this is very dangerous, but it’s all I’ve got.

I am going to shop for some supplies. I am going to look for some aromatherapy supplies. I still have horrific menstrual cramps. Year’s ago a combination of bergamot and ylang ylang in oil massaged on my abdomen used to help. If you try this, it is not safe for pregnant women, because it can cause uterine cramping. I want to find some support pillows, and something to help me apply lotion when my husband and chief lotion-spreader isnt around.  Or is sleeping. 😊

I have new boxes to get organized, so I’m going to do just a tiny bit of that while I have the spoons and need to lie down again. Ten minutes?  I love making my nest cozy. Then I’m going to watch episode 2 of AHS:Cult. I’m so afraid of clowns! 🤡 Even before it was trendy! Maybe this week I can catch up on OITNB and Kimmy Schmidt, too. I’m even thinking of picking up a book. I feel centred enough to try.

I hope you’re doing well!

💜

PS, I felt like a real Zebra the other day! I was doing something where I put my arms out or something, and my son freaked out and asked if I was turning my arm upside down because it looked freaky. My arms are pretty normal, as Zebra arms go, but it made me laugh. 😄

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.

 

My Super Hyped Doctor Appointment!

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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.

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! 😘

Goals

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I had lofty intentions for this blog, but it seems to have devolved lately into a daily diary of my exploits. I could have said pain – but that’s just melodramatic. 😄 it’s kind of true, though.  I really do document my day to day pain at this point. I am in Survival mode, essentially.

…I started writing several hours ago. I’ve been distracted, had a nap, fielded a call from my daughter’s art teacher, (she suffers from anxiety, and has had spotty attendance this past month. He was concerned, understands, thinks she’s awesome. She endeavoured to turn in an assignment today, even though she was struggling).

As I was saying, I feel like I’m still in survival mode. I’ve had to shed most of my activities not actively related to living. This morning I felt as if I had taken a step out of the ooze. It’s great when I can add things back, like playing with makeup. Geez. Putting on makeup is something most people take for granted. For me, playing can take two or three hours for a simple face. A face most people would put on for date night. It takes me so long because I rest between steps, lie down, have to stretch.

I had to tell my mom I needed some space for a bit. I feel so responsible to her, but if I don’t get to her for a bit (Dad too, of course) I feel guilty, but I need to strip my life for a bit again. Just the basics. Making sure I get enough sleep, eating properly, taking my medicine and vitamins, bathing – which can be tough. I need to be for my family right now.

It looks like my husband needs to go for more consultation on his eye. He went to the doctor on Saturday, and the pressure was up in his left eye. The doctor wants him to see another specialist. Soon. I’m concerned. He was prescribed more drops, fully researched, for the one eye. Within two days his eye was red and angry again.

It’s kind of stressful over here. I suppose I shouldn’t be surprised if I am feeling exhausted and out of sorts. I’m trying to be responsive to and supportive of my friends, but it’s rather like I’m a flailing drunk trying to make sense of it all. My head pain has increased again, which isn’t too surprising, since I haven’t been looking after myself.

Going forward, I pledge to be gentler to myself. I will practice good self-care and remember I cannot be my best self if I am out of sorts.

My family needs me.

Besides, what ever turns out the way we expect it to, anyway?

Thanks for being here, Zebra friends! 😘

My Wonderful Husband 💙

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Things got a bit awkward? no, unfortunate last night. My darling husband and I started to snuggle, and we got about as far as Marge and Homer in the above .gif, only we were still wearing our matching pajamas (yes, every year at Christmas I buy the family matching pajamas. We are Canadian and it’s May, of course they’re on!) when suddenly I had the blinding head pain and nausea return. I was so upset. I’ve been in too much pain to be intimate for so long. Of course he understood, and just held me. He has to stop being attractive, too, though.

I was thinking if I should ask him if I could tell this story, I paused and I could almost hear him say “Why? It’s facts!” I started to cry. He’s so wonderful. Of course, just then my kids burst in with early Mother’s day gifts. They had a makeup brush I wanted and deodorant in a particular scent. They bought three sticks! My son informed me. Also, I stink. They wanted to know why I was crying, of course, so I told them it was because their dad was wonderful. They were fine with that. My husband rounded the corner shortly after and I had a chance to ask him if he would be embarrassed if I shared the story of last night. “Why, it’s facts?” He said.

Yesterday I just slept all day. I had stuff I wanted to do, but a two-hour nap turned into three, which became five… I think it was good. The pressure in my head was bad, and I needed to relax. My husband suggested I sleep in again today, but I thought if I did that I might not get up at all. When am I going to accept that he is always right? I did some makeup stuff, but the photos are awful. If I don’t feel good, the photos don’t turn out. Waste of time if I can’t show off. Or if I cringe looking at the photos.

Right now my head is throbbing and my jaw really hurts. I overdid things. My pubic bone hurts, too, likely from sitting up so long the past few days. I ache all over. I can’t remember much of any conversation. Watching TV is futile. I can only watch reruns of animated stuff I’ve seen a million times. I can’t follow other stuff. Law and Order was really bad. Archer is baffling to me. I keep calling him Bob. My husband watches sports beside me on his tablet. Or we watch together.

Ha! Husband just ran in, gave me a kiss and ran out again.

This head thing is really frustrating, but my husband really cheers me up. So glad he’s in my life. 💙

For Mothers day (because my husband is such a terrible speller, we refer to it as Mothra’s day, and of course Fathead’s day. Although that may have come about as a autoreplace suggestion. 🤔 My husband is a Fathead, yes he is! Full of knowledge!)

Anyway, I haven’t really been feeling well enough to do anything for my Mother, so in appreciation, Mom, if you are reading this, I will not take you to see Snatched this weekend, that atrocious looking movie with Goldie Hawn and Amy Schumer. My Mom works so hard looking after my Dad, she deserves major snaps, because she has her own challenges, yet she cares for him tirelessly. I’ve long felt it’s easier to be the patient than the carer. I know I would have bailed long ago.

I’m feeling really frustrated with this stupid head pressure affecting things so much. I didn’t even vape yesterday because inhaling was going to hurt too much. That’s not good. I’m frustrated it’s taking from the tiny amount of leisure I was afforded. I don’t want to have to give everything up. I’ve had to give up so many hobbies already.

I’m scared it will come down to choosing between functioning and being comfortable.

Have a great evening, Zebra pals! 😘

Monday Dawns

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I spent much of this past weekend crying in pain, but with some rest, slow massage, gentle movement, medication, and patience… I’m feeling slightly better. At least I’m not longer getting the spins every time I sit up. I even soaked in the bath for a bit! Washed my hair for the first time in two weeks! Well, my husband did. He then spent a half hour gently combing the tangles out. He’s so good to me. 💜

My head hurts right where I hit it all those years ago, where the fracture is. Holding it still is the most comfortable,  but I’m in danger of getting stiff, which makes things worse. My short term memory is still awful, and I can feel the pain creeping up. Lying on my side seems to help, so I suppose I will do that for a bit, see if it works.

When I woke up I felt fully okay for almost ten minutes. I was so excited.  Now I’m disappointed. I can feel the symptoms returning. The nausea, the dizziness. I’m so frustrated. I don’t want to bother anyone, but I can’t survive a month and a day until my appointment. Wait. That’s wrong. I can. I will. I just will be miserable.

To top it off, I gained a pound last week because I wasn’t eating, and my metabolism shut down. Grrr.

What would you do if you were me, Zebras? 🤔

 

UPDATE: an hour later, I feel worse, and joining the party my right lower abdomen feels like it’s harbouring a rabid squirrel. I did consider calling an ambulance, but it subsided. I can’t figure out why such acute pain all of a sudden. I’ve vaped, trying to be relaxed, seems to help, try to nap. See what that does.