Time Flies…

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Hi there! I know I have been super neglectful, but the last couple of months have been quite the rollercoaster and I have not had the spoons to also actually get off my arse and keep you updated, so now the time has come.

Firstly, I finally got in to see a gastroenterologist  and a fellowship student. Hallelujah! They listened, asked questions and took my concerns seriously! I am on a few new medications, I can’t even begin to describe how much better I am feeling. When you go from pooping every 14 days to nearly every day, what a difference! My back pain has cleared up considerably. I have a number of tests to do in January, scopes and such, so hopefully we can learn what is going on. Rather annoyed this took so long, but was rejected by rather a lot of doctors.

My chronic migraines are leaving me so dizzy I’m having to use my wheelchair more than I would like. I was referred to another doctor as my new doctor is studying for a year, and I think it will take some time to adjust. First visit, he injected into my jaw and chewing has been a nightmare since. I see him in a couple of weeks, so I will discuss this. He seems nice, so it shouldn’t be a problem.

My vision is so bad I can barely see even with my new glasses, so I’m going to try to get that sorted. I think it’s the migraines, but who knows?

My kids are struggling with school attendance. They love school, but anxiety is high, and with autism and learning disabilities, it’s just not easy. They get pretty high marks, though, so I hope they can pull through.

I’m still having trouble sleeping. I’ve been begging for help for over a year now with no results. I was told I needed to see a psychiatrist as they are the only ones who know about sleep medications, but when I brought it up to my doctor again he told me it was a waste of a psychiatric appointment. I have no idea what else to do. I’m becoming suicidal and wondering how much longer I have to live before I can say I tried. When I spoke to another doctor about crying from exhaustion she said “oh, yes, so you’re depressed.” My jaw dropped.

So everything is fantastic, as you can imagine. I am so tired of fighting to be heard. It’s frustrating to say something to a doctor and have them completely talk down to you, then have my husband say the same thing and they suddenly switch on their understanding. For example: I spend most of my time in my bedroom, but I’m not lying down or sleeping,  I’m puttering around.  Doctor tells me I’m lazy and should do something so I will feel better.  Husband repeats what I just said, Doctor now understands that I spend the day doing crafts, playing with makeup and puttering. It makes me furious!

I’m going to take a break now and cry some more. I will try to be back to a more regular schedule. Perhaps not as mentally deranged. Although I have a sense of humor about it. 😜

Hope all your pain is fleeting!

❤🦓

 

Party Weekend!

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I had the biggest party last weekend with a huge jug of Peglyte! Yes, the stuff you take before surgery to clean your bowels out. The GI doctors felt I had been so constipated for so long, I should start fresh, so to speak, before I started a bunch of new medications.

More TMI to follow.

I’m annoyed by some of these medications because they are huge! I used to be able to swallow the handful just fine, but now I must divide them up. It should help my motility – the rate at which food passes through your body- which is happy making.

Just attending the appointment on Thursday, the motion and movement – I pooped seven times on Friday with no medicine. Obviously, my lack of movement in general is impairing my movements, but I definitely need more help. The chronic nausea, never being hungry, I haven’t been eating much, maybe 800 kcal per day, and I still have gained 40 lbs. Not much has come off since the purge, either. My body is so weird.

I started on Saturday, with instructions to take the Peglyte every 10 minutes until it was gone. I took 4 of them and was so ill, I was sure I would be sick. It worked, but I repeated things on Sunday, waiting 15 minutes between and things went so much smoother! I still felt horrible, but once things ‘passed’ I went to sleep. You go until you are pooping clear liquid, by the way. Not fun. I am still weak and tired. My intestines are finding their way back to normal.  If they are able to. My son says I look so much thinner! I am not to leave things go that long anymore. Three or four days without a BM and I need to take action.

I can’t believe how much abdominal pain I had. I do feel so much relief. I am not able to wear waistbands, and yesterday I had a tank top on, but the lower band was too tight on my lower abdomen. I needed to change it for a loose tee-shirt.

I am sleeping now. Too much. Isn’t it always either too much or not enough? I don’t know if my body is just getting back to where it needs to be, or if it’s the medication I am on, but I can nap all afternoon and be ready for bed when the husband gets home. I suspect it’s the muscle relaxers that are supposed to make me drowsy.  Unfortunately my back hurts as much as ever. Well, my cleanse took it down around 10% or so.

It’s going to be interesting to see how this GI situation plays out. I already feel like I will be able to do more once I shake this exhaustion. If I can sort out some of the other issues and figure them out, it would be so great to feel better! I have 6 tests ahead, I think, and they said about 6 months to get them all. One scopes my throat, one my butt, one I must swallow rings and be xrayed, one I must wear a nasogastric tube for 24 hours, one I must eat a radioactive egg sandwich. and I can’t remember the last one.  I’m trying to focus on the possibility of feeling better, not tentacles of all sizes being shoved into my body. 😋

Hit by more exhaustion.

Sending love.

🦓

I Don’t Want to be a Pirate!

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…and I don’t want to walk a marathon, either.

So, I went to my appointment at the brand new EDS Clinic last week. I managed to survive. It took me a while to not only recover physically from the appointment, but to process the appointment itself.

Overall, the appointment was a success, I think. I went into the appointment with a fairly open mind, free from expectations, just hoping for some benefit.

Now, it seems the purpose of this clinic is to gather specialists who have an interest in seeing patients who have Ehlers-Danlos Syndrome. They currently have a gastroenterologist, a psychiatrist or psychologist I can’t remember which, and are working on the physiotherapist.

They reviewed my case, and then did a physical examination. First there was one doctor, then another came to see me and did her review. This took over two hours. Nothing special, except they detected arthritis in my left knee, which would explain why it hurts so much, and probably why the pain wakes me up at night. This is fairly new.

Now, really, aside from pills, the only treatment for EDS is physiotherapy. We all know this. So it was no surprise this was the hard sell I was given. They told me I was severely deconditioned. I cannot argue with that at all. But it was presented as: the doctor would say it normally. Then he would say it slowly, providing a long explanation. Then he would reiterate it quickly. He tested me for POTS, but kept me standing up, in pain, as the machine kept erroring. Then, he made a note for my doctor to monitor my blood pressure because it was borderline. I was so annoyed. This was toward the end of the appointment, I was in so much pain, the room was spinning, and nobody was nearby to catch me. Gee, blood pressure high? 🙄

One thing I consistently find frustrating is when doctors hear I spend my day in bed, they shut down right there, end of story. I am a complete invalid, sickie. They do not listen to why I choose a bed over the sofa. Firstly, all of my stuff is handy in my room. Secondly, I can stretch out and work out whatever kinks I get when I have space. Essentially, every morning, I fold up the blankets so I have room to work. There is a reason my nickname is Hamster Girl!

Another issue, he seemed not able to grasp the concept my pain clinic was not fully looking after my needs. As of this point, I have only had one Botox Migraine treatment since June 2017, and no Botox in my body at all since June. Although controversial, the body injections helped me a lot, and I am hurting! (Side note: the pain clinic has sent out a note saying they will no longer be doing injections. I also remembered, in my last convo with my pain doc, he said he wanted to switch my pain pills as he felt they weren’t working, I agreed.) Anyway, as we were about to leave, I blurted out we needed a referral to a pain clinic. Any Pain Clinic! He obliged. (Oh! I didn’t receive the note yet, but was told about it because the old pain clinic manager called me, as they had a cancellation with the old pain clinic’s new neurologist for next week. I mentioned this to the EDS Clinic doctor with some of the symptoms and he was very concerned about my head situation.)

Another weird thing was, he asked me if I exercise, and I said I do stretches, which he said do not count. He only counts timed exercise. Well, I hate timed exercise. I told him I used to be very active, walking everywhere, and that doesn’t count either. He suggested I go for a brisk walk. I nearly made another suggestion, but we had moved on.

I always love it when I am told things that hurt ‘shouldn’t’. Like my Symphasis Pubis. I began laughing. He told me it especially shouldn’t hurt because my daughter is nearly 16. Great. I will tell it. WTF?

All in all, it was a valuable appointment. I completely agree that I am deconditioned and physio with someone competent would be amazing. I had a really good guy for a bit, but I was in too much pain to continue, and three times a week – I was too weak to even do that. I think this is even more gentle, more home-based. I’m slightly nervous, because the time before the good one, the physio was all “join a gym! Join a gym!” Not good.

I didn’t like that they were trying to goal-set for me. One doctor wants me to start pool walking by the summer, and the other doctor was “I want to see you run a marathon in five years! Ok walk.” I have no desire to do either of those things. Oh, and the male doc kept saying “you’re still a young woman!” Uh, more than 3 and my bullshit detector goes off. 😆

They were both really pressuring me to start physio now! Now! Now! I do understand momentum is important. But I am not certain they are understanding how messy my pain management situation is. Yes, it’s fear, too! I barely sleep because of pain. I am just hanging on managing my pain. It’s very complicated. I spent this weekend mostly horizontal, trying to stay home from the emergency room. That’s how much that appointment took out of me.

I can completely see they are right. I need their help. But I am scared to add on more without more pain support.

I have scored a gastroenterologist, a therapist, a physiotherapist, and pain management. Not to mention neurology. Here’s hoping that appointment answers some questions.

Thank you to everyone for all your love and support.

 

Things Aren’t Happy

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This gif reminds me there is no one missing from our family. Things aren’t quite so dire. There are always people who are more in need than we are. We should remember them, at this time, and at all times. Drop someone a note. It really will make their day.

However, on to my tale of woe! 🤣 The past few days I have been sleeping. Waking occaionally to vomit. Yesterday, I was well enough to watch tv with my daughter, and had to use the washroom. Oy! Pardon the grossness, but I pooped a Christmas tree! I was vomiting, thank goodness my husband was working from home, I had my daughter rescue him from a conference call – I honestly thought it was hospital time. Now, I used to have problems with constipation.  So bad that I would have to take an injection to reverse the opiods so I could go. I was going everyday this week! I didn’t eat, though, much. So strange. I feel horrible still. I am hoping things improve. It sounds like the flu, right? Nah, just more intense version of my everyday. I’m cold, hot and I can’t stop shaking.

As for Christmas gifts, we celebrate Christmas, I have been ordering things, but I don’t remember what I bought for who or what. I haven’t maxed out my card, so we seem to be okay, but the boxes that are arriving? There’s a lot! What have I done? What do I need to wrap? Oh God help me. Next week will be brutal.

I have managed to escape the in-laws Christmas dinner. My husband has finally gotten across I’m too ill. My MIL understands, apparently, because we share symptoms. No, it doesnt bother me she’s 85. 🙄 However, she used to scream at my husband for helping me in any way. It’s best if I sit it out. It’s an hour each way. I can’t do it. My mother asked me if I was coming for Christmas. Even after I explained. They live an hour and 20 away. I wish people got this, ya know. LISTEN!

I wish I could stop obsessing about where my friends have disappeared to. I realize it’s the holidays, and I don’t expect to hear from people now, but… yeah. It’s pretty lonely here. I wish I was much more of an introvert. I need to work on this. I bought some therapy journals, and I hope they provide some distraction.

I’m working on getting some doctors working on these issues. Well, my husband is. It is not going well. I was rejected by one doctor because I have not been diagnosed with Chrohn’s disease. So new GI, go through the waiting list. I’m burping almost constantly, even water is painful to drink, and I have a huge pain the size of my fist on the right side that hurts when food moves around that bend. I’ve had it checked out gynecologically six ways, so we are confident it’s a GI thing.

This weekend, I think we try to put up the tree. I hope the minions can get it done. My kids are stuggling pretty hard with school. But they deserve privacy.

My husband actually showed them my Christmas tree poop yesterday! Part biology lesson, part ‘yes Mommy really is sick, this is evidence’ not that they doubted, but he’s so matter of fact, he just carries on! 😆 They are 15 and 13, so it wasn’t torture and they could have told him to take a flying leap. I wondered about it, but seriously, what if they were home alone with me one day and I had a fecal accident. It hasn’t happened yet, but it might. They will be a lot more prepared, and just thankful it is a normal colour!

That’s probably enough rambling from me today. Make sure you reach out to someone you love today. December can be cold and lonely.

 

Botox Shots

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I had my needles for my migraines on Monday, and it was an experience. My appointment was scheduled for 9:30, but we weren’t seen until 11. Around 10:15 is when I put my head down in my lap, and 10:30 is when I burst into tears.  I just can’t sit up that long. So they let me into a room to lie down, but it only had a dental chair. So I sat in it and dangled my head over the edge.

The doctor came in and he remembered me, but couldn’t place me, which is understandable. He believes anything over 200 iu of Botox in the body at any time is wasted, so my 600 of body iu was a total waste. At this point, I’m coping well without it. My back hurts like a demon, my pubic bone is not bothering me as much, though. I am better at taking my medicine.

I had some relief from head pain, as they also inject you with lidocaine, but the back of my head still aches. It’s really tough to stay cheery.

I have confirmed I have a referral to both a gastroenterologist and a neurologist. So there will be investigation. I am hoping for some relief with the Botox. I need to relax. My husband called on the cell this morning and I had to yell to be heard. It made my head hurt.

It seems as if this doctor will be running the clinic for the time being. I am to book for my regular interval, 9 weeks, but they aren’t set up that far yet.

I have purchased a bunch of new clothes, as my weight has stabilized, it seems. I have day pajamas and night pajamas. The Gap has some super soft knits if you know or are some people with SPD.  I’ve only seen the women’s clothes, as that’s all I’ve looked for. I had my nice pajamas on, as I’m walking up to the door, my husband comments that my pants are saggy in the butt again. Dammit!  They are too big, meaning everything is too big. On the bottom anyway. Maybe my stomach just isn’t bloated. 🤣

At the moment, I need to ensure I lie down often. Rest. Things take hours. But I can avoid these headaches. Neckaches. Which is from being tense from the pain, i think. My face usually hurts regardless.

I’m still sleeping a lot. I’m trying to reach out more to people. This is a rough week. Husband is working on year end. The kids are restless. Anxiety is up.

So, I wait.

💜

The Appointment

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I haven’t posted in a bit because my head and neck pain has been really bad. I have been trying to cope as best I can with frequent resting and making sure I take my medication on time. The pain has still been so overwhelming, the only thing I could really do was sleep. So I was sleeping up to 18 hours per day. I had also developed this weird swelling of my mouth, but I think we’ve figured that out. I didn’t have it last night, so cleaning my mouth guard seemed to help.

I was really hanging on for my doctor appointment.

Husband and I arrived well in time for our 8 am time. We waited a few minutes and were called in. He asked what we were there for, and I began describing my symptoms. He stopped me and asked if we were dealing with this before with the previous doctor. No… He referred us to you, the neurologist. Oh, but he’s not a neurologist! He’s an anaestheseologist! This appointment is to ensure I have enough medication!

My husband spoke for a while after that while I tried to compose myself. All I know for certain is we have more of the magic cream that makes my neck feel awesome for ten seconds. It’s actually not bad.

There is no neurologist on staff, but they are hiring one. So he will refer me. It will just take a long time. I also demanded a referral to a gastroenterologist, which he tried to dance away from, but I insisted. Sorry if you have to do work, doc.

I saw my GYN on Tuesday, much better appointment. She feels my period was a one-off. No cysts or anomalies on the ultrasound. Did a full exam, while uncomfortable, we determined most of my pain was likely gastrointestinal, hence the gastroenterologist. I have a very sharp pain on my lower right quadrant that is horrific. She also gave me a prescription for visanne, should things get out of hand.

My husband was brilliant and rented a wheelchair for these excursions. It made things so much easier! I didn’t feel like I was dragging myself down the hall. We have a prescription to buy one. We should get on that.

I’m not entirely certain what to do now. I can’t live like this for 6 months until they sort things out. I will get in touch with the EDS clinic and see what they have at that hospital.  My GP will refer, he just doesn’t know to whom.

The other option is ER with every flare. Not good options.

Oh, and I will be getting my migraine shots, at least. They are set up for October 24, with a doctor who is amazing, so that’s positive. He doesn’t do the rest of the body, though, and a shot in my pubic bone would go a long way to less pain. My back… I could probably do it myself after 12 years! Ha ha!

Ok, getting tired.

I’ve bought a bunch of cute things to cheer me up lately. I hope I have the spoons to show you soon! 😄

Hugs to all.

💜

I’m a 10 out of 10

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You know you’re gearing up for a migraine when you lecture a stranger in your dream for wearing too much perfume. I even gave her the speech on the proper distance you should be from someone before you first detect it. I was quite thorough. The proper distance, by the way, is conversational distance. That is where you should first detect someone else’s fragrance.  None of this where they walk into the establishment and you can taste it before you even see the person nonsense.

Anyway, I tried to play with makeup yesterday, but the migraine started creeping up. I continued, because it had been over a week! I played for a bit, then finally had a nap. Slept from 1 pm until 8:30 pm when my husband came to bed. I was so restless and uncomfortable.  I couldn’t settle my stomach. I didn’t have anything solid yesterday except for oatmeal for breakfast.

I couldn’t sleep last night, I was just awake, restless. I keep trying. I’d dissolve into tears every once in a while, the pain was so bad, and then it would dissipate. Then ramp up. Ugh. I would lie there, just trying to be still, trying to distract myself. Reading cat memes. Reading long form news stories.

I was supposed to have Botox injections for migraine and for pain management on August 22-ish.  Since then the migraines are back, I’ve had my first period in fourteen years, (Mirena) and I’m wracked with pain.

I have not heard back from the pain clinic. Realistically, it’s been 3 weeks? I think? It feels like an eternity. I feel like most of the pain right now is in the back of my head, whatever we are dealing with there. One month until my neurologist appointment.

It’s also been close enough to a month that I believe it is time to start harassing the EDS clinic again. I think we shall do those things, see where that leads us.

I’m interested to see if I have a period next month. The question: was the Botox contributing to my lack of menses? How? Dunno. Correlation does not equal causation yeah yeah. We will see.

Let’s tackle one thing at a time. I will certainly bring it up at the EDS clinic, I don’t know if they have a GYN on staff, but I will ask for a referral straight away, as well as for a gastroenterologist, as that doesn’t seem to be happening either.

Happily, however, my stomach seems to have settled and I no longer feel like throwing up my toenails. Yay Gravol!

Short term, I don’t seem to be sleepy. Or I am already dead. I occasionally find a comfy spot and all is happy for a while, so things aren’t terrible. I’m going to focus on medicating myself today, listening to podcasts, and maybe tv if I can. Tonight I’m definitely taking a sleeping pill, and back to that if I need to.

I was thinking of a warm bath, but moving…

I can do a month! Right?

And however long the EDS clinic takes…

💜