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!

❤🦓

 

I Miss Sleep

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First, today would have been my grandmother’s 97th birthday.  She was looking forward to reaching this milestone, and mentioned it every time I spoke with her. I miss her so much.

I am still struggling with my sleep. I have not yet been to see a psychiatrist, apparently these are the only people in Canada equipped to deal with sleep issues. Night before last, I broke down and took some Zopiclone I had left over. Oh, the difference! I slept deeply, restful the whole night. My pain was slightly better, I was in a better mood, but I was still tired yesterday. I couldn’t get anything done because I still had the effect of the sleeping pill on me. Last night I slept on and off, and today I am completely useless. I can’t do a single thing as I am simply exhausted. I have tears running down my face. I’m snapping at my kids. I can’t even keep my eyes open. But I lie down to sleep, and my pain keeps me awake. I only pass out from exhaustion.  I don’t actually sleep. I am then woken up by pain. It’s been nearly a year of this. I don’t know what to do, and I don’t think my doctors seem to think this has any urgency. I am dragging myself around. I pull my things out to do something,  but I just can’t. I’m too exhausted and uncoordinated. I usually end up bursting into tears and putting it all away again. I sometimes have a good day or two here and there, but I mostly have zero energy. I feel like I’m rotting from the inside. I have constant hallucinations.

Mostly I just lie here with my eyes closed. Anything else is too much effort.

I have no idea what to do.

Hope things are better on your side!

Hugs

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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.

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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.

🦓

 

Doctor Appointment

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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!

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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.

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