Last Week Was Hell

 

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I spent last week curled in a ball, crying and hoping the pain would stop. I occasionally slept, ate crackers or drank water or iced tea when I could, but most of the time, I was too nauseated and in pain to eat much. I kept thinking ‘is this my life now?’.

I never seem to account for transition periods when I start new medication. I started or changed I think 6 new medications in the past two weeks. Not to mention the bowel cleanse I did (under doctor recommendation) the previous weekend. My abdomen was so sore I couldn’t wear anything that touched my abdomen or waist at all.

I am feeling much better this week. I am still very nauseated. I am on a lot of anti-nausea medications, but they aren’t really working well yet. I still have to ramp up on some of them. My back still really hurts, and I can’t stand for long, still. I’m very disappointed. These medications are making me so tired I am sleeping now, but I either don’t sleep or I sleep all the time. I’m either in agony, or I’m so wacked out I can’t do anything. Isn’t there a middle ground?

Frustration is definitely setting in. As well as the realization that this probably won’t change. I’m stuck with this, and I am bored as hell. I’m tired of pretending everything is great, because it isn’t.

I have two of my scopes scheduled, in January. They managed to schedule two for one day, so that’s handy. Looks like crackers and iced tea until then. Although the chicken and mashed potatoes stayed down over the weekend.  Whee!

Today is very rainy, so my joints are achy, but I feel better than I have in a while, so I will celebrate that.

Trying very hard to be positive.

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.

🦓

My GI Tract Will be Scoped

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I will also be looking at downsizing my huge tracts of land. I just tried on a 2x shirt I ordered and could barely get it over the girls. This is untenable.

Back to my GI appointment. I was a bit nervous because it was through the EDS clinic, and I met that awful doctor the first time, but these doctors were probably the best I have ever met. They had a fellowship student do the intake. She listened so carefully and asked such good questions. She really led the appointment and I didn’t feel like I had to explain myself or guess what may have happened to me. By this, I mean my guesses about my birth trauma are just suppositions. That’s when the pain started and it makes sense, but it’s really a guess.

I was examined, found to be full of gas, you can play my gut like a drum. The doctor came in, she confirmed everything and we went through the listing of about 6 scopes I will be going through. Timeline will be about six months. We will check my motility, scope up and down with a camera, I have to swallow rings and be xrayed the next day. Lots of things to check my motility. I won’t be enjoying those scopes, but I will like to poop more than once every 10 days.

Going to the EDS clinic is great, because there is an administrator there who is made out of sunshine. She is just the coolest person, and she talks with me and husband before our appointment AND takes care of stuff. I always feel like a real person again. I always look forward to seeing her. There is another woman who works there who used to work at my old pain clinic. I couldn’t recognize her face, but when I listened to her voice for a while, I realized it was because I always sent my husband up with my cards to register. I recognize her voice, but I didn’t see her much! I hope I see her soon to tell her! She’s sweet!

My husband does research, that’s his ‘thing’. So he looked up the lead doctor at the clinic. Not only is he handsome, he has a pretty darn good reputation for research. He may not have the reputation my pain clinic doctor has, but he has headed some large and important studies. He has the potential to be just amazing and well-known. My husband told me he is only 43. I am not comfortable with doctors being so much younger than me! (Not really)

I have sent letters to the patient relations department of the hospitals. One, being that my first appointment didn’t go well. I do not qualify for hEDS under the new qualifications, however it’s because I scored 4/9 on Beighton. Now this was January, and I told the doctor I could push further, I was in pain, but if he wanted to see something specific, please tell me. He was silent. The Patient relations person is amazing, and they aren’t taking away my diagnosis, but I am nervous. We are discussing. I can repeat the test fine during summer months, so we shall see.

The other letter is to the other hospital regarding the pain clinic and how I am not being heard. I am still in incredible pain. I’m not sleeping in any kind of pattern. 3 hours here, 2 there. I’m exhausted.

My husband and I have been discussing my presentation around doctors. I don’t know if I am doing something wrong or not. Am I not deferential enough? Too aggressive? I am running on pure adrenaline usually.

I have a whole new butt-load of medication to try. I know being more active will help, too. Sigh. I have also gained back 40 of the 120 I lost. I will cop to 15 lbs of that. When I eat oatmeal for breakfast and a couple of oatmeal bars for lunch, no dinner, how am I gaining weight? Besides not pooping? Honestly.

I also realized, I sound just like my grandmother. She was gassy, burpy, constipated, had awful heartburn, as well. I don’t know if she actually coughs up her food like I do. Gross. It’s like a cud. My grandmother had so much work on the farm and looking after grandpa, I don’t know if she actually had proper treatment.

That’s me up til now.

Will keep you updated if something fun happens.

Love to all.

🦓

 

Nachos, Flanders-Style!

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I had my Botox for migraine about nine days ago, and I feel the toxin beginning to work. The injections were an adventure. My appointment was for Thursday at 4, and somehow it was changed to Friday at 9, but nobody informed us. We learned through the grapevine. When we arrived on Friday, I was in a lot of pain, still static on these opioids, holding strong. I have not been able to sleep much, just two or three hours a night, and then every fourth or fifth night I sleep for ten hours.

I am waiting for my appointment, and three staff members are chatting. Then two start scream-laughing. I absolutely blacked out. I am so sensitive to noise and light, in pain so long, sleep deprived, I have no idea what happened,  but I found myself in a quiet room with husband in the dark. Crying.

Next, my doctor comes in. Have I mentioned she looks like Amy Adams? She drives needles in my face I can’t even feel. Then she tells me she is leaving to do a fellowship. She has referred me to her mentor, though.

I’m crushed.

I’m seeing my pain doc this week. Days are meaningless now. I’m so tired. My stomach is so upset. I’m constantly nauseated despite the medication.

Husband and I undertook an Ehlers danlos Triathlon last Friday. I had an EEG, bloodwork and an xray in two different hospitals in an hour and a half. We left the house at 8 am. and I was home with pajamas on and nachos by 10:58 am. Not bad. I eat FODMAP nachos, which are the corn chips, with lactose free cheese melted on top and lactose free sour cream. Yay. It’s my traditional after doctor food.

I hope this next appointment is helpful. I would like to have enough medication to function and to move without crying out all the time. Sleep would be nice, as I am so very grouchy.

I very much don’t want to live my life like this. I get so many comments about how my pain is from inactivity or I don’t move enough. It’s because I am in so much pain, geniuses! I’m glad they are actually looking at my pelvis and the structure at least. But, do they not get that if I wanted to sit around all day, I would sit around all day? I don’t need an excuse or a cover story about having chronic pain. My husband makes decent money now. I could just be a housewife. But I did actually have hopes and dreams.

🦓

 

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.

🦓

Yay! Pain is Fun!

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My nerve block from the end of May is wearing off significantly, and I am in pain. My face is very sore, making eating and speaking uncomfortable. The back of my head really hurts, traveling down my neck into my shoulders. I’m trying to be as calm and relaxed as possible. I think this will mean avoiding people for a bit. I’m very much an introvert, and I am quite sensitive. Knowing this about myself helps to make good decisions about setting boundaries. I’m not exactly great with boundary setting, but I need to work on this for my own health.

I tried the Cefaly on cycle 2 and found it surprisingly gentle. Almost more gentle than the gentle cycle. Electrode placement is so important. I’m now doing two cycles a day. It is helping so much. I’m still lying in the dark, but can watch TV, so am not bored too much. Using a tablet is tough for too long, and my vision is quite blurry.

My digestive system is very grouchy. I hope I see that GI doc soon. So uncomfortable. I found some exercises for my pubic bone online. I will try those starting Monday. I don’t want to hurt myself knowing we are going to the Banksy exhibit this weekend.  My first non-doctor outing in a year!

I approached my doctor about a breast reduction also. I don’t know how likely, but I am so uncomfortable all the time. I have sores, I can’t wear a proper bra because the band hurts my stomach. The straps even of a bralette dig into my shoulders. Despite the EDS, I have had 10 surgeries, four non-keyhole, and only one took a bit to heal because it was at my waistband.  Maybe? I sent an email afterwards, so we will see. The EDS clinic doctors seem super nice!

So, I am waiting for my treatment to begin, essentially. Saving my energy. I feel like garbage, but I have felt worse. I need some me-time. I’m pretty exhausted from trying to be social. From trying to make friends, from battling sheer assholishness. Putting up walls for people who refuse to accept boundaries. I didn’t realize it would be this much work to explain and explain again things that seem so simple to me. Like, please don’t ring my phone repeatedly after 9:00 PM because you feel chatty. Or ring my phone repeatedly at all. Or write nasty comments on my Instagram page because I haven’t returned your DM. You can see me writing about chronic pain.

I’m tired.

Happy Pride Month!

🦓

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!