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.

🦓

Three Weeks Later…

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The past three weeks has been filled with trying to get my kids to pass and finish their respective grades, having them prepare for summer school, dealing with the first week of that, ushering in the purchase of new beds, and trying to facilitate the angst though the purchase of all new appliances.

My husband does not like change. He will put off purchasing anything until he absolutely must. The beds, for example.  Our fridge door is being held on with scotch tape. Dishwasher is broken. This must happen. I have no involvement with the kitchen, so it doesn’t bother me. He has things chosen, it now is having things picked up and hooked up, which is a huge chore. He can’t take all this time off and look after me.

The new beds, however,  are fantastic. My neck hurts less. Actually, I hurt more, but it’s not the bed’s fault!

Once again, with a whole new crop of doctors, we have to play around again. When I first started at the pain clinic 11 years ago, they put me on an opioid. That was standard practice. I am still on a bit of that opioid, and I’ve been trying to get off it for three or four years now. My pain doctor would say next appointment. Then that appointment would be in six months because that was first available, there would be 10 pressing matters to discuss,  then it would be… next time.

In the meantime I go on marijuana oil and a marijuana derived pain supplement. Fine. Everything is good. I’m okay as long as I don’t move too much.

My migraine doctor sends me back to my pain doctor saying take me off the opioid. At the same time, the marijuana pain pill is going out of stock. These two make up 62% of my pain relief. My marijuana oil only lasts for 5 hours at a time.

Now, my husband manages my medication.  He takes it and puts it in the weekly boxes for me, so I don’t know how much I stepped down, but before long I was in agony.

Now, those without Ehlers-Danlos Syndrome, and even those with, because everyone is different, right? The way mine works is that if my spine goes out-of-place, all of my muscles immediately tense up so nothing else gets ‘damaged’ until we get help. My stupid, well-meaning body. With my pelvis doing whatever nonsense it’s up to, my whole pelvis muscles tensed up, including my back. We have been trying to medicate them down ever since. Yesterday, we or actually, he gave me a booster: which is a smaller dose of medication set aside for emergencies allowed by the doctor. After that, I was able to sleep from around noon, to my regular time this morning. Previously I had been sleeping in two to four-hour chunks. I feel its much easier to cope. Like I’m able to.

I’m so frustrated with these doctors, though. What were they expecting? I was just supposed to stop everything? That I am actually not in pain and am doing this for fun? Honestly, the way people have been treating me. I might just break.  I don’t want to be on opioids. I don’t want my kids to hear me screaming in pain, either.

My migraine shots are coming up. I’m hoping that will help the face pain. I was talking with the other doctor about the pubic bone pain and he asked if my migraine doctor would be willing to shoot me with botox in the pubic bone.  So that’s a fun conversation I get to have. Although, last time I did compliment her on how smooth her legs were and asked if she waxed or shaved. ☺ I think I was completely giddy with pain relief.

Why do people think they already know what I think? Nobody ever asks what I want.

Someday someone is going to treat me like a person. Scratch that. My Migraine doctor is great. The office staff looks after me very well. It’s mostly the doctors who don’t know what they are doing and people who are rude in general. But those people still don’t see me as a human being.

The way things are as of now, I am completely off the marijuana based pain pill, as it’s out of stock at the moment and I have no choice. I cut down a bit on the opioid, but I need to stay where I am because I am hurting at an 8 or 9. I  am waiting to see the doctor who is supposed to be seeing me for this. I had an appointment last week, but was too sick. Imagine. Still taking the marijuana oil. It’s helping me through. I do have other medications, but those are the main ones for pain.

The physiotherapist is ready for me. My last two physical therapy experiences were:

1. Lose the cane and join a gym. For this, $125

2. A guy who couldn’t figure out why my legs were so unresponsive. Duh, I was full of Botox. I can’t be smarter than these people. I can’t.

Looking forward to this. 🙄

I will let you know if anything changes. First I want to walk without blacking out. Then physio.

🦓

Cefaly at Two Weeks

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My approximation of the box pose, only more ‘me’

Along with getting rid of my chronic case of tech neck, I am dearly hoping mid-July’s Botox treatment will give me the pain relief I seek. The last doctor treatment for migraine (or anything, actually) was May 28 when I had the nerve block. Over time, my facial pain, the pain in the back of my head that radiates down my neck and into my shoulders returns as the day wears on. On the plus side, I can sit up for ages before becoming dizzy. I usually become sore first. I have several lamps now and aim them all over the place at various levels to limit pain. Noise levels are still problematic.

Anyway, The Cefaly.

There are two types of Cefaly units. The US one, and the

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The Cefaly Box

Canadian and rest of the world? European? one. From what I understand, the US model has one speed and an allowable wear time of 20 minutes.

My model has three speeds 1. Active Headache 2. Prevent 3. Gentle and is allowed to be worn all day. (The website at http://www.cefaly-technology.com explains all this).

Included in the box is a set of electrodes, (3 maybe? My husband ordered a whole bunch so I got confused.) And some forehead wipes.

Cefaly works by cleaning your forehead with the wipe. Bioderma is the closest sub for this. It must be non-oily. Next you place the provided electrode (powered by 2AA batteries, don’t worry) on your forehead. The brochure will describe this, don’t worry. Mid forehead. You then slide the lovely Wonder Woman Headband down your head until it engages with the electrode. Press the button on your WWH until you get your program. (In US this is ONCE). Enjoy your 20 minute treatment. Repeat if desired, unless American. Lowest price we found in Canada was $299 at Costco.ca.

I am fortunate to have the gentle cycle, because I am very sensitive to TENS! Yes, I had no clue this was TENS at all. I had used a machine once at my grandmother’s house once about 25 years ago and it was so incredibly painful.

The first time I used it, thoughts I had included:

“Dear God, I hope this thing shuts off eventually. What if it doesn’t?”

“This feels like Dave Grohl playing timpani on my sinuses!”

“Did I buy a home ECT (electroconvulsive therapy) machine by accident?”*

*(I had a family member go through this treatment several times, we discussed it,  plus the awful scene in cuckoo’s nest, I understand it was a very mild situation.  My brains were being scrambled, and I was getting scared. That’s where my weird mind went.)

But I endured. The next therapy I needed to stop about 5 minutes in. It was just too painful. My husband complained of a headache that evening, so it was time for an experiment. He got to wear the band. He couldn’t feel anything! I couldn’t believe it.

 

The next time I used Cefaly, I sat up and carefully applied the electrode supplied, to my forehead using a mirror to judge the best spot midway between my eyebrows/forehead ridge and the start of where my forehead curves. This session was so much less painful. It still hurt, but was much better.  This time I noticed how much better I felt after the session. I had about 10 minutes where I felt I still was wearing the headband, and I was kind of scrambled for a few minutes, like waking from a nap. My shoulder and neck pain was so much better, and my facial pain was from a 6 to a 3 or 2.

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Electrode Placement is Very Important

 

The next three or four days were tough, as I had excessive sleeping. I would lie down for a quick nap, planning to wake around 5 for dinner, do my therapies; and wake up the next morning.  I’ve done sessions over the last three days, still on gentle. However, now the painful part is only a couple of minutes and I tend to fall asleep for the last part of the session. The damn beeping to signal the finish always wakes me. I’m thinking of going up to level 2 soon.

 

  • Having your electrode placed properly is very important. Use a mirror.
  • I found having the TV or something on is helpful to pass time or distract.
  • Bioderma is a fantastic substitute for the included wipes. I have not found a distributor. Alcohol is too drying and will degrade your electrode pad.
  • Just press the button for emergency stop. 
  • Two AA batteries.

 

At this point I am looking forward to my afternoon sessions. It’s like a challenge.

The fantastic part is my insurance reimbursed us for it. Yay!

Verdict: Even though I am sensitive to TENS, this product is highly effective in reducing and treating my headaches. Where I would expect to be useless, I can take a treatment and after 20 minutes my pain is seriously reduced.  I’m amazed.

I will keep you posted!

 

My brain…. molasses or something.

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I am in excruciating pain. My pubic bone and my back are at war. All my fingernails are squishy, so many just tore I ripped them all short. I am taking vitamins,  but I need to sleep again. I can feel the nerve block being gone. My face hurts just so much. It’s not so bad first thing when I wake up, but as the day progresses,  the pain gets worse and my spelling, vision and coordination also deteriorate.

I need to hang on to mid July. Whee! I am working on Cefaly first impressions, but this flare up, which I think was from deviating from FODMAP, actually.  I had some not gluten-free snacks. I think that is my kryptonite. One snack has molasses, and I can have 100 g with no issues. But gluten is out of bounds for me.

My memory is horrible.  I can’t concentrate on anything or think at all. Is it the pain or medication? I don’t know. I am trying so hard. You can tell it’s bad now.

Love.

The Doctor Appointment: or I’m the Girl with the Most Cake

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I attended the doctor appointment of intrigue on Monday, and found out SO MUCH INFORMATION! I have needed two days to recover. Also, my nerve blocks are wearing off, so please bear with me, my face hurts.

Well, it seems the lovely doctor who did my nerve blocks at the other hospital is now not able to be working at both hospitals. This may have contributed to communication breakdown. But it also means she had no reason to see me or take me on as her patient. When I sent her that desperate email, I had no idea, and she could have said, sorry, don’t work there. However, she took me on as her patient at the other hospital. I am so very thankful.

Now, the doctors at the clinic wanted to know how much I know, which was nothing.

The very first miracle was having the admin at the pain clinic bumping me up in the schedule so I could see the migraine doctor in the first place. I think she only saw a few people, and my husband was very nice to her, as he just is, and she knew how much pain I was in, so she got us in right away. I don’t think she brought many patients with her back to her clinic.

Now, back to the appointment. Remember the scary, nasty woman who worked there? She was in charge of this appointment. She was a ray of sunshine. I believe it was finally having job-related duties. Anyway, we had a lovely conversation. Originally, I was sent back to this clinic to get off of an inappropriate medication. Then she asked some questions. Who has been following up with me? No one. What are your other issues? Well, I spoke about my knees, arthritis, we are going to the arthritis society, it’s not too bad.

My pubic bone. I spoke about being laughed at and dismissed by the EDS Clinic. She looked concerned. I told her that it might not be an EDS issue, but it still hurts, and even if he says it shouldn’t it still does. Then it clicked. I told her it might be an injury from my daughter’s birth. They tried to keep her in until she was 37 weeks, but she was an oz short of 8 lbs. The doctor had to stand on the table during my c-sections and rip her out of my pelvis. The only reason I know is because my husband is 6’5″ and could see over the curtain. He turned white (er). He didn’t tell me until later. She looked at me in horror.

I told her about my back pain, which she blamed on inactivity, of course, but my husband jumped in and mentioned it was our original reason for visiting the pain clinic, and how I was improving for so long.

When I thought about it though, doesn’t it make sense that the back pain is the other side of the pelvic pain? Duh. I really am ashamed it took me 16 years to figure this out. Not to mention I was in labour for 2 days with my son slamming against my pubic bone. They gave me an epidural for the pain right away. Then when they looked at the ultrasound realized he wasn’t going to fit. I am 5’8″. I’m not some little, slight, thing. Oooh, fun fact. While I was still under the illusion of VBAC I received advice from Michelle Duggar, who was on kid number 8 or 9 at the time.

When the doctor came in he told me he had given me one round of Botox injections. I agreed. We then went through everything again… at which point I corrected him and said: Dr, you gave me two sets of Botox, and a guided nerve block under anaesthesia. He was not like being corrected, but was kind of… okay! Knows her stuff!

At the end of the meeting, he was unimpressed no one was following me. We were expecting to see an appointment at the EDS pain clinic in September. So he booked me for a full exam in July.

Surprise! We have an appointment with the EDS Pain Clinic mid – June! So we are going to let the other pain clinic know, just for transparency, and see what they can offer. Another Miracle!

It was so amazing, I called my Mom as soon as I could, as my spoons came back, on Monday. We are so different! I was marvelling at the miracles and my luck, my Mom wanted to know how everything got so screwed up! She said everything should be perfect! Well, yes. It has taken me so long to get over that expectation. Sometimes miracles happen when things are messiest. I can’t demand perfection when I live in chaos. My daughter has perfectionist tendencies and it nearly cripples her from doing anything. It’s painful to watch.

Embrace your imperfections. They are some of your most endearing qualities!

I am still working with the Cefaly! I will give you an update in a couple of days!

Intrigue…

giphy3In my previous post, belatedly posted, we established I have chronic migraine and messages between my doctor and me were not being relayed through the clinic, like they were supposed to be. My doctor was displeased, but I saw her at her home hospital, and I am on the pain clinic waiting list at the EDS hospital. The issue is, not many doctors hold a license for prescribing one drug I am on, but have been trying to quit, but my doc hasn’t had enough time to make that happen. Now it’s a priority. So I have to go back to the bad clinic for a bit.

Well, I just received a call saying there was a cancellation at the bad clinic and they called me right away because they know I am in need and they want to have a discussion about my needs going forward.

Anyone else sense a clinic about to lose a lucrative client?

I am certain my migraine doctor spoke up about leaving me hanging for three months. Part of the reason I hadn’t directly emailed my doctor earlier is I had once, and received a confirmation call from the nurse on duty who refused to speak to my husband, who is by my side constantly through this, and eleven years at this clinic, he has signed all forms indicating he is my proxy. She made it sound definitely not okay to be emailing.

Or, it could be just to refill my prescriptions.

Anyway, my migraine doctor recommended a new 20180525_120251.jpgmachine alled Cefaly. I hope it makes me look like Wonder Woman. I haven’t tried it yet. They zip tied the zippers on the case together and I thought I might sever an artery if I tried to cut it open. My husband opened it with nail clippers. Genius.

I am losing large chunks of my brain, it seems. I just can’t remember things. My brain is usually razor sharp. I’m forgetting how to spell! Well, but am I forgetting, or just screwing up? I wonder.

I’m starting to relax a bit. I hope to blog a bit more. Truthfully, Things have been tough. My parents follow me everywhere on social media, and are asking so many questions; after our distant relationship, it’s really hard to adjust. I’ve tried speaking with them, but I don’t think they get it. They imagine me talking to friends or my kids or my husband. No! Most of my friends deserted me. My kids are introverted teens. They talk to me when they need their Dad to understand something, and my husband gets up at 5 am, gets home at 8:30 and I may see him from 9:30 to 11 pm if he stays up late and I’m not in a sleep phase.

But things are getting better. I have more friends now. I’m not always sleeping. Though I have my weeks. My sister was here at Christmas, but the last thing I did with a friend was last June. Ha. Last time I even went out that wasn’t a doctor appointment. That sucks.

It’s just tough having your parents witness your every human interaction. My mom means well, but she offers opinions, and I take it as criticism (because it always has been in the past, even though she doesn’t mean it that way?), partly it’s great that people are treating me as normal, but I am really delicate still. I don’t get jokes much, (maybe it’s living with three people with autism?) Maybe I am too weak, still? I feel as if we are just going to end up hurting each other or saying something the other will misunderstand, because it’s easy, and I am in pain or the medication has made me fuzzy. But I feel too weak to have the conversation, too.

Blah, it’s awful. Does anyone else feel like this or am I awful? Or both.

On a lighter note, shortly after my Botox in July, I’m getting my hair done! Decided. 😜

Much love

 

In the Blink of an Eye…

It looks like this didn’t publish when I tried to publish. Sorry. Let’s attempt it now, and I am working on another post…

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My beloved Grandmother died on May 7th. It was as unexpected as you can get for someone who is 96 years old (97 In August) and isn’t terribly ill. She was an amazing lady. She was my inspiration and role model in all things. She was so tough. She never let anything slow her down.

It was my utter frustration in not being able to attend her funeral, it being in Winnipeg, that led me to send a rather nasty (Canadian nasty) note to my doctor about me having to live in darkness while my life passes me by. Well, my doctor had me in her office and was sticking needles in my face within two days.

It seems she was sending me messages through the clinic, which I was not receiving, of course, and I was doing the same. Now that we are in touch, we can bypass the stupid place and get to business.

As for the MRI, my brain is fine, no leaking, no shifting, I seem to have good old fashioned chronic migraine. The doctor has a treatment plan, a bunch of it is old stuff from the last clinic, getting me off an old medication, Botox regularly. She feels I can probably feel good some of the time.

I was doing really well before, when my treatment was regular, so we shall see.

Sitting up is so amazing, I can’t even begin to tell you.

Why do people insist on wearing perfume to a headache clinic? Why?

Love