Monthly Archives: February 2008

We don’t have a family doctor, haven’t had one since The Mundane One’s doctor passed away a few years back…. our state of family doctors here in Ontario is horrible. So we are a part of a family clinic that has NPs (nurse practitioners) who see us and if the issue gets bad enough she refers us to the Dr. who oversees the clinic, or refers to a specialist for whatever the issue may be.

So… since she has known The Mundane One ( with CFS/ME & Fibro ) over a year now… our NP has been overly optimistic that a remission WILL happen, and that if we are optimistic enough and if we get the right doctor to help us, we could improve his quality of living… (We are not NOT optimistic, just painfully REALISTIC about the circumstances that come with this illness. We do the best we can with what we have, and try not to be too negative about what we cannot change. He’s going on 7 years now with this) Statistics say his odds decrease every year that passes and he doesn’t see any improvement.

He is not sitting in bed withering away letting this illness consume him… or NOT trying to do the best he can, he pushes himself constantly ( probably too much) to try and do stuff, be an involved father, and husband in the family affairs and in running the household. But he is limited severely due to the amount of pain and fatigue he battles daily. Just because he needs to rest and sleep 12 to 18 hours a day depending on the severity of pain and fatigue on any given day does not mean that he isn’t pushing himself to do stuff the other 6 to 12 hours a day he can get out of bed.

After yesterday’s fiasco with a really crappy email from someone about my husband just being lazy and unwilling to get better from his “supposed” CFS/ME, and how he was a poor example to our children….I was not feeling very good about going to see a new doctor for him today.. You have no idea how many doctors we’ve seen in the 7 years who have just patted him on the back and said “lose some weight, and you’ll feel better. Do stuff and you’ll feel better” don’t sit around and do nothing, get up and do stuff every day”… (well if he felt ABLE to do stuff, or course he wouldn’t feel this bad and looking to you the “expert” who took an oath to help, for some answers, and help managing the pain… and he WOULD be doing stuff, but because this is his level of ability when he PUSHES himself…we thought maybe YOU’D be able to help…how stupid of us to think that a DOCTOR could help. How asinine a stance is that from a doctor? It makes me furious!!! I swear because they can’t figure out what causes it, or how to cure it, they don’t care to try and figure out how to lessen the severity of the symptoms with even TRYING some different meds, or suggesting deep muscle tissue message or daily hydrotherapy, etc ( not that we COULD do those things anyway since the government disability will not cover those things… but I HATE being dismissed because they don’t have time, or think that a case that might have to make them THINK would be too much a bother…to think they’d actually have to WORK for their pay cheque.

Well we had an appointment to see a new rheumatologist today, in the city, which requires a 1 hour drive there; the appointment, and then usually a meal there due to timing, and then a 1 hour drive back. Hubby is totally exhausted now and will be completely useless to himself for the next 2 days, for what? For NOTHING… to be put through 20 minutes of lift this arm, bend that leg, twist your neck, pull my hand, and push my hand away. Etc … putting him in extreme pain afterwards from the exertion it took to complete the exam.

“In my experience in the people who come to me with CFS and fibro, there is nothing we can do to cure this, you know that right? You must have read a lot about this illness to know there is no cure… I don’t think pain meds help in the long run because they are only effective for a short time and then they need to increase the dose to allow it to work. So the best thing I can tell you is… to just push yourself and move everyday and much as you can so you can get some improvement.” well HELLO DOC… he’s been pushing and moving everyday for 7 years and it ain’t getting any better! the only time is was “better” and manageable was when he WAS on pain meds!

OHHHHHHHH I am SOOOOOO mad… but why should I be, I expected this kind of response…it’s nothing new…yet here I sit crying…so frustrated…I’m still so upset and disappointed and feeling let down by the medical establishment.

I looked at him and said ” so, forgive me for being crass or whatever but basically what your saying is..” because there is no cure, there is nothing I can do for you, and trying some things to try and lessen your pain and better your quality of living is not anything I can or am willing to do? So you’re basically telling him he needs to get of his ass and move and he’ll get better? Hmm don’t you think we would have done that already if that was all it takes? He can’t go for a 5 minute walk for exercise outside when it takes ALL the energy he has to put his SOCKS on, and by the time he got to the door to go outside, he’d have to turn back around and go to bed.” and when he does feel up to it, he DOES go for short walks with us!”

He reiterated his stance, and said again in his experience the people who “get better” or ‘improve” from this are the people who keep moving and don’t give up.
I said that we do the best we can to remain positive through this, and do what we have to do to accentuate the positive moments and minimize the negative etc…he ordered blood work and an x-ray on one hip that bothers him when he is in the car for too long sitting, and sent us on our way, to never be seen again.. “Your family doctor will get those results and deal with anything that comes up” “have a good day”

WHY WHY WHY, is it OK to pump a person who is going to die of cancer in 6 months full of pain meds to make their last days pain free, but someone with chronic pain who is destined to live this way for another 30 to 60 years, is not allowed to have access to that same kind of pain relief? They justify it and say that it is because the person will grow tolerant to it and require MORE and could develop a dependency for it, and the cancer patient is going to die anyway, so it’s ok if they develop a dependency, they won’t live that long anyway.

What a load of BULL that is!!!!!

He’s not looking to get high, he wants time released pain relief!

A diabetic has a dependency for insulin in order to live a longer healthy life normally, and if their body decided it needed MORE insulin on a daily basis to process sugars in their body, they’d have NO issues writing a script for more… but because the medicine that a person with sever chronic pain needs to live a longer healthy normal life is a narcotic usually, they say it’s not ok to NEED it and use it to have a better quality of living, so just do without?

So what if their body develops a dependency to it and they require 10 more MG a day then they did before? It’s ok for people with CFS and Fibro to live in constant pain and suffer for the rest of their lives?…BECAUSE they are not going to die in 6 months?… How backward is our society to think that way?… I am so let down by this backward system that I’ve lost all hope.

Recent studies have shown that people with CFS and Fibro suffer in pain JUST as much as people with HIV and end stage cancer, yet they are still not taken seriously when they complain about their pain and suffering. The divorce rate of people with CFS and Fibro is over 80% after 3 years of the illness onset…due to the pain they live i and how much it effects thier lives and ability to cope with life, making it hard on relationships. We’re going on 7 years now with this illness onset. Tell me we are NOT fighting this, and I’ll tell you to kiss my ass!

The suicide rate of long term CFS and fibro sufferers is over 20 percent higher then that of the general population. The only “cure” for this illness IS death and sadly some suffers are choosing that as an actual option now!!!I’ve read the articles and the statistics!!! How are doctor NOT doing harm, but refusing to give people pain meds to help them, if it leads them down teh path to suicide? that IS doing harm and against the oath they took!!! That makes me SOOOOO mad. it is SOOOO SICK I want to scream!

I cry for those poor poor people who live in such pain that the only way they can get relief is to never wake up again.

Statistics Canada reports that 393,000 Canadians have Fibromyalgia and 343,000 have CFS/ME. And there are MANY MANY more that are not officially dxed! Add to that 500,000 cases of chronic fatigue syndrome in the US, and 37 million people in the USA have Fibromyalgia,( yes I wrote thirtyseven MILLION)

The number of people in North America being treated like crap for suffering in pain by the very society that took an oath to help them, is just plain WRONG.

I don’t know what else to say… these people don’t have the energy to fight this kind of injustice? This is JUST WRONG, and I am SOOOOO furious for everyone who lives with this pain, and for every spouse who cares for those who suffer with this, and for every family that has broken up over this, and for every child who has lost a parent to this illness through death or divorce… it is totally and completely NOT RIGHT.

I just want to scream at the top of my lungs until they get it, but it does no good…people with CFS/ME and Fibro are still living in pain, and suffering unnecessarily. And being treated like crap by the medical society and not taken seriously. It’s no wonder people look at my husband and say he’s faking and just likes living on a government handout!

If the “professionals” don’t even believe it, or care enough to help. Why should anyone who doesn’t know him, or even family and friends care and believe that he is in pain and suffering and has a legitimate disability?!

Ya….. Life is SOOOOO luxurious alright… He enjoys living in poverty AND constant pain, unable to be the kind of man he wants to be and once was. What a life on easy street. I’m so fed up right now.

As far as I’m concerned right now the whole medical establishment can FUCK OFF. Was that harsh? yep it was, and I won’t apologize either…because ya know what is really harsh? Sitting there in that office today watching that ass of a “specialist” today tell my husband that it’s ok to live in constant pain.

kids are the cutest when they are learning english

Just a few mentions of the things Bupba has his own names for at three years old

oatmeal is “Hotmeal”
housecoat is “jacket house”
doctor pepper pop is “doctor office pop”
vitamin c is “vitanim seed”

Today was the day….I was up early this AM had to shovel 25 cm of snow out of driveway to be able to get to the hospital Got everybody ready and drove to to the city (an hour way)…got to hospital for 12:30…checked in, waited until 2:30… they had a decent private waiting room for people with kids that Hubby and the kids got to use alone for the whole duration of the hospital stay, had loads of toys and videos to watch so they watched a few movies and played…we got a free parking spot right by the front doors so we didn’t want to give it up, so that all worked out well that he didn’t need to take them anywhere to occupy them for 5 hours… got in the OR and was put under at 3pm….did the thing…woke up at 10 after 4… in recovery until 5, the crappy part was it happened during shift change, so hubby was beside himself with worry because no one gave him updates cause I think he got lost in the shuffle and the family room door was closed and “out of sight, out of mind” happened…he was getting nervous after 2 hours of no news.

They took me to the out patient post op admit and recovery area where they were in the family room and before they even went in to get him from the family room, he knew I was there and came out (energy is an amazing thing and we’ve always had that sense about each other’s presence)…

The kids were happy to see me! Bupba yelled “Mommy you home!!!” all excited, to which I replied.. “Yes I am bud, cause I’m here with you guys!” The nurses thought that was sweet LOL…got my vitals checked and the kids got stickers for being so good

Then I got up almost right away and dressed asap ( going slow), Anjohli wheeled me to front door of hospital LOL… then we went to Swiss Chalet for supper on gift cards from family (went there ’cause they have soup)…felt fine no sick feeling from the anesthesia or anything or shoulder pain so far… just been peeing like crazy from the IV fluids.

I was STARVING by 5 with no food since midnight the night before!….had the soup and half a sandwich and is was good!

I feel ok when I’m sitting or lying still, hurts a bit when pain meds wear off…stopped at Wal-Mart on the way home to pick up pain meds, thought I would walk slow and be ok, but thought better of that after a few minutes in the door and the pharmacy being at the opposite end of the store…so I got a powered cart to sit on… so with that felt good enough while sitting to pick up a few other things we needed and had been going without (stayed for about 45 minutes.. a short visit for us to a Wal-Mart…got out of Wal-Mart to meet the weather really coming in…second band of the storm started when we were eating dinner…

Hubby drove home in the heart of the storm, could hardly see in front of the van all the way, but no one else was on the road either, so that was good. He’s a good driver, was a taxi driver at one point in his life and has driven in every kind of weather going. But still, I was very alert while he was driving worried about his pain and exhaustion level, so I couldn’t rest in the car much. He doesn’t drive ever.. that’s the first time he’s driven that distance in like 4 years due to the extreme cramps he gets in his arms and legs and ribs from holding himself in that driving position for too long.

We got home at about 10:30 pm, from needing to drive slow… and we missed the ferry by 3 seconds and had to wait a half hour for the next one to get back onto the island that is the county… I coached the kids to put themselves to bed (WOOHOO) and laid down from 11 to now…hubby changed my dressings, and now I’m down stairs thawing soup for him cause he’s just exhausted.

Will be going back to bed as soon as the soup is finished…I feel ok…just slow response time from the anesthesia still. Going slow from sore stomach muscles and taking just Tylenol and or ibuprofen for pain as needed.

The Hospital seems like a great hospital…one of Canada’s top teaching hospitals. I told them that I was most nervous about the moments of going under the general…everyone was great… bedside manner was outstanding. The team all introduced themselves prior to going in the OR, and even the doctors used first names, not ” Hi I’m doctor so and so…” it was ” Hi I’m Peter…I’m the OBGYN we met a few weeks ago…good to see you again…” and ” hi I’m Joan, I’m your anesthesiologist…” they were all comforting and kind, they obliged answering my silly questions about them feeling on their game and had all had a decent lunch and good sleep the night before etc they were aware of my general anxiety issues…and the male nurse was great , he was from Cape Breton and when he asked me to visualize my vacation I wanted to go off to I picked to go visit Cape Breton, and he was really cool telling me to visualize CB on the map, and then to see the Cabot Trail, and that when I got there he’d meet me at the Red Shoe pub for a pint LOL… he did this while I was breathing in the mask to go to sleep, I felt the coolness of the anesthesia go in my IV in my hand and tasted it a bit in my mouth (kinda weird… I can still taste it a bit) and closed my eyes listening to him tell me this stuff, so he took away all my anxiety with his visualizations guidance, and I just let it come over me, and the next thing I new I was awake in the recovery.

Bupba thinks my belly button has a booboo and needed to be “sixed by de doctor office.”

I’m resting for the next few days for sure.. and I don’t care about the 40 cm (literally, it’s drifting) of snow in my driveway right now, I’m not going anywhere for a while. It can stay there. Or perhaps the wind will stay around after the snow stops falling and it will drift right back out.. one can always hope