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.

Irreplaceable Me

giphy7

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! 😘

Creeping up on Feeling Better

giphy24

Yesterday, as I lay in bed, I actually could move around a bit without being in incredible pain. I was a very responsible person and slept the afternoon away. Of course, I missed my medication times, so I don’t know if that’s why I’m a bit screwed today. I woke up with mild pain. Enough that I knew it was there, enough that I’m afraid to do too much activity.

 

Today will  be another relaxing one. I was hoping to get

giphy25

Actual Photo of my right ovary.

something actually done, but that will not be happening.  I’ve already taken breakthrough medication,  so I’m not happy about that. There is the matter of the post office. Apparently, all the shopping I’ve done in the past 4 weeks has come to roost. I think there are 5 or 6 packages there to be picked up. They usually leave them, but I guess with so many, they just took them to be safe. It’s mostly Old Navy clothes. I bought a bunch of tanks and sleep shorts because I’m so chuffed I’m now an XL in regular sizes and not in plus. And a dress for wearing to the doctor, because it’s easy to change in and out of and has no waistband. Clever!

 

giphy3Today I’m also going to try to take a bath. I’ve got the Ola plex sitting on my hair. I haven’t really washed my hair in two weeks, or had a submerged bath in the same. Ugh. Bird baths just don’t quite do it, but I haven’t been able to move without pain. At least I don’t smell.

 

I’m hoping giving myself another day of rest will let me play a bit tomorrow.  I’m kind of bored, but have no energy.

My abdomen feels like a suitcase. Where the zipper along the sides is burning. If you can follow me for a second here, my daughter was a fairly traumatic c-section. They let me push for a long time, they let me sit for a long time, trying to get me to 37 weeks, she was stuck in my pelvis, there was pulling.

Anyway, I know what I feel like happened is not what happened, because my husband is 6’5″ and saw over the drape. What my abdomen feels like is a wheelie suitcase on its side with a zipper all around the bottom, right side and top, and was peeled back with burning pain. It makes no sense.

Then I have deep pain toward my right ovary, running through my back. This is connected. It is likely literally connected, because of the Endometriosis. I have adhesions connections and lashing the organs of my pelvis together. This is probably why it hurts when I move. Or sometimes just for fun! I have a Mirena, so I don’t know what’s up.

Then there’s my regular EDS discomfort that I deal with. That’s nothing to write home about. IBS, carpal tunnel, sore wrists and hands. Knee pain. The usual stuff. Migraines. Gastroparesis. The usual suspects.

Hope you’re having a good day, Zebra pals! 😘

Slightly Brighter Day Dawns

giphy23

You know how it is when you make a big deal about something, it always resolves itself immediately.  I woke up this morning feeling not quite so desperate. It’s an awfully good way to feel. The pain is still very much there, and my back is screaming at me even as I’m lying here, but I don’t feel quite as nauseated, and I haven’t even vaped yet this morning as the kids have just got off to school (I like to wait until they are out of the house if they are going). I feel that may take care of things, but I do have my breakthrough if not.

After I get my meds in, I expect to be somewhat comfortable as long as I don’t move too much. Stay loose, just maybe I can slip in the tub later if I’m good? Maybe?

I will be lying very still and calmly today. Trying to get some good rest in. I don’t want to exacerbate things again. Not to that level.

If the pain doesn’t subside enough we are aiming for an emergency room visit if we have to on Monday. I’m Canadian, so we had our holiday last week. The kids would be in school, less chance of upset. Husband wants to be with me, he’s expressed this, there is a major crisis at work, so this would be optimal. I have time to see if it resolves, and time to rest. Naturally, if it becomes too unbearable, we go, but even though my kids are aged appropriately, I am not certain leaving them alone is possible, and bringing them is also problematic. So my husband would have to drop me off, and that isn’t ideal, either. I’ve had some poor treatment in hospital, including the doctor who told me that I was “just constipated”. I grabbed his notes and threw them down the hall I was so insulted. I hope I’ve matured beyond this.

Time for rest. And vape! 😎

I’m expecting comfort. Not miracles!

Predictions

giphy21

I predict I will be visiting the hospital soon. This pain in my front right abdomen is agonizing. I feel like I’m on so much medication. But I’m not really ‘high’. In that Beavis and Butthead would be funny, kind of high. I feel like I’m  (shoot, I just made a mucromovement!) If I keep really still, but I’m trying to relax, anyway, I don’t have pain. If I move, though, something will sublux, and my pubic bone aches from my 2 pregnancies. Both of whom are teens. (Or will be in two weeks). I find it hard to think. I want to sleep. I’ve taken my sleeping pill, night marijuana oil, night meds, and breakthrough medication.

I’m extremely hungry, but my stomach is upset. I bought new clothes from Old Navy, I’m always spilling, in size XL. In regular people size! Not plus! I’m amazed! Thrilled! I essentially bought a new wardrobe! $3 tanks and sleep shorts, and the same dress 3 times. It’s a great dress, perfect for the doctor!

It’s what I’ve been doing to pass time. It’s the only attention span I have. Got to stop now.

Anyway. The pain is increasing, wrapping around my back, to the point it hurts to move often. Add this to the nausea and dizziness. Add in my neck and head pain and I just need to have a moment, perhaps.

It has occurred to me people have been treating my pain for the last few years, but not really looking after my other bits as well as they should have. We need to talk about that. I think my doctor finds girls icky, and avoids the tests he’s supposed to do. Not good. I will have to scold him. As if it will make a difference. Put that on the list of items to fix.

My husband has just come in from picking up a friend from England? South Africa? He lives both places, and just flew in, so picked him up and dropped him off, and now is at work downstairs in the dining room, because there was (is?) some sort of crisis.

giphy22

Do you love hospitals as much as I do? 

He did check on me first and felt there was a hospital visit coming. He doesn’t like that I’m still on the same amount of medication for a whole two days, (not a personal fault, a measure of pain) it doesn’t fit the pattern. I don’t remember, am in too much pain now, probably then, too. I think I will try to maintain as much as possible and go to the hospital at the most convenient time for our family. Also, I don’t want to scare the kids. When I told my daughter is might have to go, she burst into tears. She is under a lot of stress right now.  I’m feeling comfortable and sometimes I resolve cysts on my own. Plus, I might be catching the cold the kids had. Oh joy.

I love my kids. Is there some other way we could have gotten them? Pods? Amazon?

If you don’t hear from me for a couple of days, I am probably just very heavily medicated and trying to be very still. If something happens I will try and get a note somehow at some point.

My sincere apologies to Tylenol, you are much more useful than I thought.

To readers and commenters I’ve neglected, and well, everyone! I’m trying, but it shall continue for a time. I truly appreciate your patience – I will catch up! 😄.

The gentlest hugs to all of you. Have a wonderful whatever it is, wherever you be! 😘

…as a Kite! 😄

giphy20

The pain has not subsided in any way. I’m just lying here, taking my breakthrough meds as prescribed, and trying to hold off going to the hospital.

To answer proactively,

Why I don’t want to go to hospital:

  • It will greatly upset my kids, who are currently struggling with anxiety.
  • I do not think there is anything they can do for me there that I can’t do for me here.
  • If it is, in fact, a cyst, I am not having surgery, they will just send me home anyway.
  • Anything that is wrong with me, actually, they will drug me up and send me home.
  • I have more suitable (not better, granted) drugs here, until I really can’t take the pain.
  • I will be more comfortable here no matter what.

So, this is why I’m trying to hold out no matter what. I’ve been through this before, and it isn’t fun, but it’s definitely surviveable.

My husband is working from home today, so at least I feel protected. That’s not the right word… 🤔

Enjoy your day, Zebra friends! 😘

O-Vary Nice to See You!

giphy19

Today has already started out scarily awful. This was a long weekend in Canada. Our washing machine broke. It did only cost $250 to fix. I didn’t get my sheets changed. Our kids do theirs each week. I couldn’t move.

My two kids, who both have Autism, have been struggling with anxiety this past month. My daughter (15) has been sick off and on and struggled to make it to school other days, just the past two months. My husband has been walking her to school last week.

My son, 13 in 2 weeks, has struggled since February, maybe longer, so my husband walked him to school for two weeks, then met him at school for two weeks, and today was the day he was going to let our boy fly free!

Except the girl was struggling. So he was going to hang around the neighborhood, visiting various Starbucks until our children were ensconced in school.

Only the boy woke up still with that cold he had all long weekend. He’s missed so much school we have to send him unless he is actively vomiting or has a fever, the Principal will dismiss him.

My husband came to talk to me about the chaos when pain exploded in the right side of my abdomen. I began screaming. 30 seconds or a minute passed. The pain abated. The screaming turned into a moan. Husband continued his sentence as he crossed the room and grabbed my pill case. He handed my my breakthrough meds and said “ovarian cyst, take one every hour until you’re comfortable. Stop at 3. Vape when you need to. Rest.” He then popped the pill in my mouth as if he were offering me communion and held my water bottle to my lips. I lay back and waited for some pain relief.

Because the kids were not to know their dad was lurking in the neighborhood, he left at his usual time of 7:00. The kids continued on and I tried to keep comfortable. Around 7:30 I started to vape, as the kids were ready to go, they just needed to leave.

The boy finally left around 8:05, a bit late, but made his way to school.

The girl was supposed to leave at 8:20, but we hadn’t heard anything by 8:30, there’d been a problem. My daughter comes running up the stairs with the doorknob in her hand! The thing broke! We are actually in the process of replacing all our doors, too! She is in a panic because she can’t fix it, and she can’t just leave it, because she’s afraid I will get hurt. So I have to shine the dad-signal.

Dad comes running, of course. Daughter wasn’t happy, but he fixed the door. He walked her to school.

Does it end there? No…

My son is now home. They sent him home because of that cold, but he did get homework. My daughter is not able to stay at school, but she made it, so she’ll be back soon. I’m pretty sure she will be upset for not reaching her goals, so I am bracing for a day. But she could be fine.

I am two weeks away from my Botox treatment shots. The old ones are wearing off. I have excruciating back pain, my neck hurts, my head hurts, all my muscles hurt, I have abdominal menstrual-like cramps. I want a bath but I can’t move.

Two days after that I see my doctor again but we can talk about my head!

Have a fun day, fellow Zebras! 😘 I’m going to be relaxing.