Party Weekend!

giphy1

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.

🦓

Doctor Appointment

giphy2

I am so infuriated I have no idea what to do next. Let me start from the top. I went to the pain clinic doctor yesterday. Before I see him, he has a gatekeeper who writes down notes and brings forward my concerns. They look at my chart, make a plan and discuss. Makes sense, right? Sure when it works.

I went in there with a few concerns. First, I have not been sleeping. I get an hour or two, then day 5 or 6 I get a full rest. This is three weeks. My pain is keeping me awake since I’m stepping down the opioid medication. She tried to tell me my pain was spiking because of withdrawal. Never happened to me before? Oh, well take melatonin. Really? Well, practice good sleep hygiene. Do you really think I’m new at this? Well, we will slow down the step down on your medication, you’re doing the rushing, not us! The doctor comes in later and first thing says I need off that medication now.

I explain about my muscle cramps, constant pain from it, how much it affects me and how it impacts my day. I reiterate my daughter’s birth story, and the probable damage. She forgot to mention the spasms to the doctor, but he has a medication that might help. Gatekeeper chimes in that it might make me drowsy so I’m actually tired when I go to bed. I refrain from strangling her. Then the doctor asks me if I have children and I nearly shit myself. Obviously she has told him nothing. I immediately launch into the saga of my week in labour, but he isn’t listening. This is vitally important, but lost.

I had mentioned about a breast reduction, but gatekeeper scoffed. Don’t wear a bra. She doesn’t get it at all. I manage to ask how I’m supposed to do physio if the band makes me vomit and the straps makes my fingers numb. This, brought forward. Least of my concerns right now. (I’m a G in Europe or an I/J in US with a 38 band. I have a small ribcage, but yeah. The band is extremely painful it presses on my stomach itself, the straps cause finger numbness immediately,  total loss of feeling in 2 hours, and I have constant sores developing underneath, it’s a freaking nightmare)

She does seem convinced I need a gastroenterologist. They are helping get one on board by harassing the one at the EDS clinic.  I’m still eating the small meals a day, and whatever I can manage in between. My stomach burns like fire. Ugh. We now carry ZipLoc bags everywhere. I expect people to mistake me for Beyonce anytime now.

I did get called a fucking bitch twice and a slut once. I mean, my husband was driving his car on the street like an asshole, not levitating for pedestrians, totes my fault. 🙄  I was also wearing sunglasses indoors, I’m so photosensitive. I deserve to be called a fucking bitch. 🙄  I must be one of those newfangled sluts who never have sex, and rarely leave the house. Mmmm, constant vomitus soooo sexy.

The more people I encounter, the more I want to be alone.

Present company excepted.

I’m starting to hallucinate from lack of sleep. What fun!

Oh, Gatekeeper heavily suggested I see a psychologist to talk about my problems. (This has been something I have been begging for) because people with way less problems than you see them, you know. I also want to see a psychiatrist who can please help me with sleep issues. Please? (Another rant culminating in me demanding to find me names for both.)

This was the woman I saw last visit. When she asked where I was from, and I answered “Winnipeg ” she said, “I’m sorry”. (People from Toronto think this is hysterical).

If people in this city are being treated the way I am, no wonder things are tense. I refuse to leave this house and it is because of other people.

To add to the love, our city being shot up the other night was right where my husband grew up. Beautiful area. For some reason my husband’s ex girlfriend had to post all about her feelings and tag my husband on Facebook. Sigh. Normally, but not after 20 years and when you’re living with my exhusband. Apparently saying the first part (the tagging) is making the shooting all about ME, and pointing that out, is slutshaming. I can’t stop laughing, because no. Reporters reporting doesn’t mean the news is all about them, and in the end, doesn’t it always begin and end with the triggered white Male? Losers (’cause it’s always a pile on 🙄) . Glad I know there ARE good ones out there or I would be so depressed.

Ok. I’d better stop or my eyes will roll right out of my head. I have a low tolerance today, I had better look after myself.

Trying to get back to love, but I’m so low on reserves.

🦓

Nachos, Flanders-Style!

giphy1

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…

giphy

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!

giphy2

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!

🦓

My brain…. molasses or something.

giphy

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

giphy5

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!