Dear IBS

January 31st


Dear Irritable Bowel Syndrome,


You and I have been having this tug of war battle for a while now and I feel like I'm losing my footing. I no longer have days where I'm not chained to the bathroom. I never know from one moment to the next how much pain I'll have or if I can actually eat and keep the food down. 


I understand that you are a problem that hits world wide. I totally get that you don't have a cure and that treatment doesn't always help. My concern is that you are now taking over my life. I struggle to eat because I don't want the hassle of vomiting into the nearest toilet. 


You were not invited into my life nor were you ever really desired. You showed up, took over my body and gave me this shallow frail identity in lieu of my original strong frame. Thank you but you can take it back. 


I've sought advice from Doctors, seen countless Specialists, unending hospital visits and nights in emergency. X-rays, CT Scans, MRI`s, Blood work, you have demanded it all, yet you give nothing but grief and sorrow in return. 


Why did you choose me? What heinous crime did I commit to deserve this harsh sentence? 


I beg for mercy and reprieve.  Leave me to enjoy the rest of my years. Although, I know this request is falling on deaf ears. You are what you are: A painful, irritating disease. 


Signed in disgust 


Stomach.

Waiting for the pain to subside

A familiar discussion *chronic illness sufferers have with other people*

What are you doing?

I'm waiting for the pain to go away. 

Does it ever subside?  

No, it just changes in intensity.

What about swimming, there is no pressure on the joints?

It's great in the pool, but an hour later I'm screaming in agony wondering why I did it in the first place.

How many medications are you currently on?

On a good day 20, on a bad day, MORE.

How many specialists do you have alongside your primary care?

Fibro Specialist, Meniere's Disease Specialist x 2, Internist, Soul Intuitive Chiropractor (brand new to me not the field), Mental Health Specialist, Vision Specialist, Arthroscopic Surgeon, Rheumatologist, Gastroenterologist (still waiting on that appointment) Assorted other clinic Physicians, Specialists during emergency hospital visits.

Is there a correlation between PTSD *Post Traumatic Shock Disorder* and Fibromyalgia conditions? 

 There have several papers documenting the correlation between developing Fibro after suffering a traumatic experience and there have been several Soldiers that have been diagnosed with both alongside GWS *Gulf War Syndrome*

Are there any cures?  

Sadly, drug therapy is available, physio and psychotherapies but no known cures.

Will you ever get better?

Again, sadly no. There are days that are better than others, but over the long haul, the progression of each disease runs at different rates so it's impossible to know what 10 years from now will look like.

Wow, what do you want for the future then? Or better still, what do you expect to see yourself doing in the future?

I see myself in a wheelchair, with little to no hearing. I see a visit from the Grim Reaper much sooner than most. Oddly, enough that part really doesn't phase me. The wheelchair is much more troubling to me then dying. 

Why, do you think death is less troubling for you?

Death is the only constant in life. You cannot escape it's clutches. You might be able to hide for awhile, but sooner or later Death ALWAYS comes for who he wants. It is the completion of the life cycle and the beginning of a whole new chapter of afterlife experiences. I fully believe, there will be another consciousness inside the realm of death and it will be one huge party! 

What piece of advice would you give other Chronic Illness Sufferers out there?

Well. Do what you can, when you can. Don't try to be the hero and complete everything in one day. Housework will always be there, take your time and spread chores out more during the week instead of doing it all on one specific day.

 

 

 

 

 

 

 

 

 

 

HOLIDAY SEASON AND CHRONIC ILLNESS

HOLIDAY SEASON AND CHRONIC ILLNESS

This time of year sees the malls and parking lots jammed full. Tempers flaring, anxiety growing, bank accounts emptying and stress higher than Santa's reindeer in full flight. 

For people with Chronic Illnesses, this time of year is a nightmare at best. The constant agony of trying to shop, carry bags (yeah right) and deal with the demands of family and friends is quite overwhelming.  In the seventeen days of December, I think I can count on one hand the non-flare up days. The closer it gets to Christmas, the worse it seems to be getting.

Yes, the added stress is certainly contributing and likely so is the wet damp weather (that is the West Coast). Of course, the bad news from the Specialist with regards to my Meniere's Disease and it's progression isn't really helping much either. 

The attempt has been made a couple of times to go out and do some shopping and other holiday related activities. Each time, the pain has been unbearable but I keep a 'brave' face on and keep going. 

Being someone who is a total 'foodie' and loves to cook and bake. This time of year is now extremely depressing. Gone are the days that I could bake and cook for hours on end and collapse around New Year's. Now, it's a struggle just to stand in one spot long enough to make a batch of cookies. I can no longer work dough with my hands because they cramp up too much. 

Wrapping presents is a challenge. I can remember sitting on the floor, surrounded by bows, wrapping paper and tags and spending the evening making sure every gift was wrapped in elegance. Now, I'm lucky if I can make sure the wrapping paper is cut straight.

Everything about the holiday season now is troublesome and problematic. There aren't enough medications on the planet to make me feel joyous this year. I'd be perfectly content to sleep my way into 2012. Alas, I don't sleep so even that idea blows. 

Any way you slice it, Chronic Illnesses impede your daily life. Even the holidays  can't fix that. 

Enjoy the holidays, the best you can in whatever means you can. Inner strength comes in waves but it is there. 

Maybe, we can luck out and Santa will bring us all cures!

Merry Yule, Merry Christmas, Happy Kwanzaa, Happy Channukah, Blessed Ramadan, Happy Unbirthday! 

Chronic Illness Update

Chronic Illness Update

So today was my appointment with my Rheumatologist in downtown Vancouver. The drive is painful at best and gives me just enough time to push my anxiety level to maximum overdrive. (roughly 45mins drive). 

Mercifully, she is fantastic and took me earlier than my appointment time. (how many Doctor's can do that?)  We spent the majority of the visit, discussing my Fibromyalgia and Disability Tribunal in February. After having such a horrid visit with my family Doctor a couple weeks ago, I was determined to make sure my specialist knew everything that I was feeling and experiencing before being 'pushed out' the door. 

She allowed me the time to sit and cry hysterically at one point while talking about my lack of appetite and inability to eat most days. She is quite concerned about my weight loss and vomit/nausea issues. 

While acknowledging my Chronic Illnesses (Osteoarthritis, Meniere's Disease, Fibromyalgia, Depression, Chronic Fatigue and Chronic Pain), she is also now checking me for Lupus. 

I guess, the best part of the visit, was the fact that she sat and let me vent about my family doctor. She made worthwhile and logical suggestions as well as ordering tests that haven't been done (that should be done on a monthly basis).

I told my doctor that I was fully aware of the progression and deterioration of the diseases and I'm at peace with that. What I cannot contend with is the day-to-day issues of the illnesses. I never know what to expect from one day to the next and that is the frustrating part.

I would love to know that tomorrow my pain level would be a 6 (that's amazing and as close to pain free for me as I get). I would like to know that I won't be strapped to the bed/sofa because even the slightest movement causes excruciating pain. I would love to be able to plan events days or months in advance without worrying about having to cancel because I'm completely immobile.

The guilt I feel is tremendous. Not because I can't work but because of the fear that I may have doomed my child to the same issues. Goddess, I hope not for her sake.

So now the countdown starts to the Tribunal. I'm far from confident on my case but know that whatever happens is supposed to happen. Of that, I have no doubt. Fate and destiny are the two things I never dispute. 

The journey continues.....

Insomnia Chronic Style

Insomnia Chronic Style

At some point in time, everyone has suffered a night where they just can't sleep. Hours of endless hours staring at the ceiling, counting sheep, tossing and turning and yet still sleep eludes you. 

Chronic insomnia is debilitating, depressing and can cause many health and safety issues. The longer your body goes without REM (Rapid Eye Movement) which refreshes the mind and gives your body the rest it needs. The more your body begins to fight against you. 

Constant yawning, nodding off at inappropriate times (like driving) and general malaise feeling can make even 'Mary Poppins' grumpy. Chronic insomnia for me is compiled by the other existing chronic illnesses I suffer from. I can go days without sleeping and no matter what I try, take or do; sleep stays at bay.

Medications have their merit and I've been on medication for years to aid my sleep. The problem being, my body becoming dependent on the drugs instead of my internal clock. So, now I am reliant on something that really doesn't work but I would be tremendously worse without.

Just once, I would love to go an entire month of sleeping all night, every night. For now, I take what I  get. It's amazing what you can learn to do on 3-4 hrs of actual sleep. 

Long distance travel and Chronic Illness

Long distance travel

and

Chronic Illness

We all dread it. Those of us who suffer from any type of Chronic Illness dread travelling for the holidays. While flying is considerably faster than driving, it can be as taxing on the body and mind for a Chronic Illness sufferer. 

Anxiety, cramped spaces, limited bathroom availability (let alone space), motion sickness, and above all pain; makes travelling at times virtually impossible. Even quick drives can be problematic. 

So imagine, what it would be like for someone who suffers from chronic pain (like Fibromyalgia, Chrons, MS) to sit in one seat for an hour, two, three. Even a 'normal' person starts to have body aches after sitting for a long period of time. For us, it's like a nouveau torture chamber. 

The idea of hoping in a plane for ten or twelve hours scares the hell out of me. Yet, it is something I want to do in order to facilitate a life long dream. Of course, the short 4 hr 50 min flight to the East Coast still poses a certain amount of fear and trepidation for me. While I want to fly, I don't want the complications that will arise from it.

Travelling also means packing medications, accessories and making sure that all documentation is ready to go (extra health insurance, vaccines, allergies, emergency contacts etc). This time of year is tough enough to travel in as a healthy person. When you compile everything extra that Chronic Illness sufferers have to contend with; it really doesn't make it look all that appealing. 

Making sure you are prepared for any situation that might come up will help make travelling a little less worrisome. (Airport  security not included here, that's a whole different blog all to itself )

Travel smartly, safely and happily this holiday season while remembering that a Chronic Illness sufferer is travelling too and could be sitting next to you, so be patient, tolerant and show compassion. One day it could be you. 

*quick tip* print off a copy of all your medication and dosages just in case you run out or they get lost (damn luggage handlers). Give a copy to a trusted person at home and carry one copy with you. This way, if you do have an emergency, there is someone at home that will be able to assist .

HOUSEWORK AND CHRONIC ILLNESS

To most people washing the dishes, doing laundry or cleaning the bathroom are mundane, necessary duties in order to maintain a home. For someone who suffers from Chronic Illness, those are milestones!

Some days even just folding clothes can be a challenge to large to conquer. There is no way to know what the next day will bring pain wise, so on the rare days that I'm feeling 'peppy'; I try and get as much of the housework done as possible. Usually, I end up in a heap of pain afterwards, but the attempt was made to feel normal.

The need for help has multiplied ten fold especially when it comes to bending, lifting and carrying anything remotely heavy. Grocery shopping is excruciating at best but I haven't got enough minions for that duty yet.

I would love to have a week where I could do my housework and still have enough energy to go out to dinner or watch a movie.

With no simple solution or cures and with the magic genie on strike, my house will just have to make due with what it can.

Now where did I put that bottle of Mr Clean?

WHAT CAN I EAT TODAY?

Such a simplistic question should be fairly simple to respond to right? Unfortunately, that is one question I dread these days. Its the unending roller coaster that is my stomach that dictates how my day will go food wise. One day, I can eat whatever and experience discomfort that is moderately tolerable and the next day, even water makes for good porcelain god worship. 


I could handle not eating very much provided what I did eat stayed down. The violent bowel explosions, excruciating stomach pain and depression that comes from a disappointing meal attempt make it so difficult to even want to eat.  


While I am enjoying the weight loss (40 lbs approx), the rapid loss scares me greatly and the lack of answers surrounding the issue worry me even more. Sure the label of 'IBS' (Irritable Bowel Syndrome) is fine but it doesn't quite engulf everything I endure on a daily basis. Add that to the Fibromyalgia, Meniere's Disease, Osteoarthritis and chronic Depression and you have the medical concoction that is my life. 


I am well aware that there is no cure for any of the conditions and aware that medications only 'help' control the symptoms and 'slightly' ease the pain but really don't heal. The ongoing fight with  government to get my 'disability' pension is wearing me down but I am not giving up. I know that work is not an option for me anymore. The amount of pain may vary from day-to-day but it is always there. 


I wish that there was a magic wand that could make me and everyone else who suffers from Chronic Illnesses happily healed. Until then, I guess I'll just have to wait patiently ha ha and endure every day as it comes. 


The sum of my pain does not define me as a person, I define myself as me. I just wish I knew what that definition was. 


cheers

Joys of Perimenopause

Sure, I love being a woman. I mean who wouldn't want to be a woman? We are the gentler species, the nurturers, the weaker sex. Ha, that is until your body decides to revolt against you. Night sweats, mood swings, unwanted hair growth or loss, weight gain, memory issues. Gees, it all sounds so wonderful doesn't it? 


I have been having mild menopause symptoms since my tubal ligation when I was 29 but it has just been lately that the symptoms have become severe and problematic.  The night sweats are easy to contend with for the most part but hot flashes are vile. They bring on yet more nausea and occasionally vomit. My entire body feels like I'm a volcano exploding into the coldness of space. I've always had a photographic memory and now forgetting the simplest of things is becoming scary and worrisome. No one should forget their next sentence mid-conversation, but somehow it happens quite often. 


The worst by far is the mood swings. Spontaneous crying, fits of rage that would scare even The Creature from the Black Lagoon.  The dumbest part of it all, is the lack of reasoning behind the rage or the tears. Commericals, movies, simple conversations with friends and family. I find that I'm much more anxious and paranoid then ever. I feel like I'm ready for a pretty white padded room some days. 


Menopause wasn't something ever discussed in my house growing up. Sure I've seen a lot of women go through it but there was never any consistency in the symptoms or reactions. It is certainly not something you can use one brush to paint the picture with. Too many factors that vary from woman to woman make it near impossible to get or give good advice. What works for some, may not work for others. HRT (hormone replacement therapy) isn't an option for me because of an earlier breast cancer scare. So now my quest is on to find something that will help the symptoms but not add to my already lengthy medication list. 


As if having chronic illness isn't bad enough. Now Mother Nature sees it fit to mess with my internal clock. My clock isn't ticking anymore, it's pounding trying to escape.


The journey into old ages continues........

POST MRI UPDATE

While I totally appreciate and am thrilled that the medical world has had such marvelous breakthroughs via testing equipment. I am however, annoyed at the person who thought creating a cylinder to engulf a human into with loud noises, spins and a rigid stay in place zone thinking it would be a 'great relaxing test'. I call bullshit!!!


2 Ativans, encouragement from the husband and sheer fear led me to the Imaging room at RCH (Royal Columbian Hospital). The ear plugs stuffed into my ears like she was stuffing a turkey. The warm cozy blanket was a comfort and the towel over the eyes was meant to keep me calm. HA! Not so much! Panic + hot flash = get me out now. We had to stop the testing for a few minutes in order for me to contend with the panic attack/hot flash. She was totally understanding, removed the hot blanket and then shoved me back into the 'easy bake oven', until I was sufficiently filled Gamma Radiation. 


Too bad, I wonder if I had stayed in longer if I would've come out a super hero. I can see it all now, a comic book, movie deal and even the spandex costume. "Rise of the RavenBran". She can scream bloody murder while jumping over tall buildings. She'll cry for days after chasing cats into tight small places. Her super power is her Super Panic Attack. The shrills alone will disarm any bandits she encounters from laughter. 


All seriousness aside, the MRI went as well as it could and now a wonderful 7-10 days worth of waiting for results. 


Insert massive panic now.

MRI....CHRONIC ILLNESS UPDATE

After waiting for years and years (started Sept 2007), I'm FINALLY having a lumbar spine MRI. When I was in my early 20's I had a Spinal Tap to check for menighetis and it is now the location that is literally the pain of my existence. 


It's the one missing piece to the medical puzzle that I'm certain the Canadian Govt has been waiting for in order to vote in my favor for Canada Pension Disability. I haven't been able to work since the above dated and my health has continued to degrade to the point it is today.


The chronic pain syndrome, the fibromyalgia, the meniere's disease, the osteoarthritis, chronic manic depression and of course let's not forget the IBS and an undiagnosed stomach issue (down almost 40 lbs since August due to stomach issues) just didn't seem to be enough for them to make a judgement on. 


Of course the worst part of the MRI is the MRI itself. Since I'm so claustrophobic, the only way to get me anywhere near that damn machine is by making me completely and utterly medically stoned :)


So off we go to Royal Columbian Hospital and the trusted radiologist (have to say that for my own mental state lol) and in the loving and safe arms of my husband. He is so my rock and my biggest support mentally, physically and emotionally. He is my hero no matter what he thinks. I likely would've taken my own life by now if it wasn't for him. He keeps reminding me that just because I have chronic illnesses, constant pain and anguish, that I still have his love, the love of our family and friends and that sun always shines. (even if it looks like water droplets lol )


Wish me luck, my blogger buddies. 

DAILY TIP OCT 26 2011

DAILY TIP

Chronic illness means that sometimes even the easiest of tasks can be impossible to try or finish. Washing your hair can be like scaling the side of Mt Everest. Tying your shoes as difficult as trying to cap a volcano.

Smiling through the pain, you know you do it too.

BEING THANKFUL on THANKSGIVING

Being Thankful on Thanksgiving

Every October and November Canadians and Americans (respectively) pause to celebrate 'Thanksgiving'. It's a time to rejoice in the fall harvest, connect with family and loved ones and reflect on what you are personally thankful for.  

This is my favourite holiday of the year. While there are other holidays throughout the year that get celebrated in a big way. Thanksgiving is a quieter holiday. It's not about opening presents or cramming your face with chocolate. It's about looking back in history to see where we have come from, where we are going and being ever so thankful for the ability to do so. 

While Thanksgiving has it's 'history' related to the 'Mayflower', Native Canadians/Americans and of course nature's bounty. It has become the most traveled day in the United States out of the all the yearly holidays. Not everyone celebrates Christmas, but almost everyone celebrates Thanksgiving.

Even with Chronic Illness, I can still find so many things in my life to be thankful for. The illnesses themselves have taught me a great deal about myself, my fortitude and above all humility. That is something truly to be thankful for.