Category Archives: Medical related

It Is Hard To Feel Empowered

Often when folks find out I’m arthritic and have two 5 year old ceramic hips I get one of two reactions.

Either folks try very hard to mask pity on their faces or they blatantly look me up and down like I would have a scarlet bluebird somewhere on my body that should have warned them. It often takes all I can not to shoot out some sort of retort and mostly because both reactions make me painfully aware of the fact that I’m not old enough in some people’s opinions and that while I suffer from a chronic illness that I don’t look sick or like I struggle with my disease on a daily basis.

Yet, I am painfully aware of what my illness does to my body and I wonder how it can’t be more apparent that I am sick. I can see the distortions in my hands, the struggle to put one foot in front of the other when I walk some days, and the exhaustion that lines my face on the days after I’ve taken my medications.

Maybe I just hide it well.

However, every so often I meet a person that finds my illness interesting and the fact that I had my hips replaced 6 days apart empowering. It’s so rare when it is someone that isn’t related to me by either birth or marriage that it will strike a chord with me.

Thank you to my recent coffee date who told me he was going back to tell a group of pro athletes that he felt they needed to suck some stuff up after hearing about my surgeries. His comment has stuck with me and I turned my energies to feeling proud of who I am and in turn wanting to spread that good feeling to other women like me.

In Canada women account for 2/3 of all new arthritis cases a year and arthritis is the number one reported chronic condition amongst women.  56% percent of current arthritis patients are under the age of 65 and people who suffer from arthritis are more likely to be overweight or be physically inactive than people who suffer from other chronic conditions.  Arthritis patients are more likely to suffer from depression and anxiety disorders at a rate of 1/3 higher than other chronic illness patients.

These are facts that only a handful of people know while the myths of arthritis are spread far and wide.

The truth of the matter is that women are bombarded these days with ideals. Ideal body type, ideal hair type, ideal skin condition and ideal fashion choices are part of the messages sent out over the airwaves, the internet, the print media, and the television.

Join this famous weight management company, use this amazing vitamin rich shampoo, this product will give you glowing skin and you should be wearing this bright colour which only a handful of people wear because it is “in” this season. You can’t escape it as it is everywhere.

I’ll admit some days I’m depressed by it because I’ve modified my diet but my limited mobility makes it so that I struggle to be as active as I need to be. I’ve used an amazing vitamin rich shampoo but it doesn’t do anything for the psoriasis that exists on my scalp and often flakes off onto my shoulders and usually at inopportune moments.  I can’t use many skin products because it sets off my psoriasis and lucky me I have patches of it on my face where folks can see it a lot of the time and even foundation can set it off so covering it up can lead to a flare which just screams look at me. Plus a lot of folks don’t know what psoriasis is so they are often put off when they see it as one political gentleman was once when he saw the psoriasis under my nails and not only hesitated to shake my hand when we met but it was probably one of the shortest handshakes I’ve ever had in my life.

I’ve been volunteering time with The Arthritis Society – Manitoba/Nunavut Division when I can and recently they announced that they are going to be hosting my favourite fundraiser Sex and the City. This event is always a lot of fun to attend but the message has a special place in my heart. It’s about being empowered, coming together to support each other, living life being true to yourself and who you are, and sometimes accepting those things that happen in life that derail our overall life plan like cancer or struggling to conceive.

Or in my case being diagnosed with arthritis at 21.

The driving message of this event that I take to heart is EMBRACE who you are and be proud of it both good and bad because all of it makes up the amazing woman you are. It is an event where we embrace being arthritic, we embrace being women and shake off the bad that comes with being both be it having pain, medication side effects or the judgement we pass on ourselves when we look in the mirror because the ideal is something we may never be.

So I end this with the words of Carrie Bradshaw:

“They say nothing lasts forever: dreams change, trends come and go, but friendships never go out of style.” – Carrie Bradshaw


You Are Fn Kidding Me!

Life tends to be rough for the arthritic. Many days you don’t want to do things that you must do.

For me a lot of the time it is going to the gym. I joined Good Life fitness recently because I needed more than a machine in my basement that I can’t use. I get the value of switching up my activities without needing 10 grand in spare income or bulldozing down my neighbors’ house so I can add a full time gym attachment to my current 50’s wonder of a home.

But I’m proud to be doing something proactive when my disease is so damn reactive. As much as I am bitching about the aches that come with the new routine and from pushing myself. I didn’t join the gym to do the bare minimum I joined to get healthy, be in shape and feel good most of the time.

The bitch thing about arthritis is it hurts to move but it is good to move anyways.

So while I noticed I’m not always thrilled to be at the gym or in a spin class I am thrilled when I realize that I’m not feeling the ache in my knee like I used to. Some days that lack of pain is what pushes me to going to the gym.

I will confess that it struck me as odd when I felt aches in my mid thigh..round about where the ceramic joint meets the femur. During my check in with my rheumatologist I mention it and a round of x-rays occurs.

I got the call on Tuesday morning. There is something on the x-ray. I should be seeing the surgeon. I wish I could say that I wasn’t surprised because I was warned that psoriasis could grow on the joint and I could be looking at more surgeries to clean the scales off of the joints.

Now I could be all macho and talk about how I didn’t get upset. That I handled the news with calm and zen.

But the truth is I had a complete meltdown in my shower.  My Flip shower head may never forgive me for the things I screamed at it.

My hip joints are only 4 years old with an estimated shelf life of 20 – 30 provided I take care of myself. I felt so lost thinking about the things in my life that make having to take time off to have my joints taken apart and cleaned and put back together never mind what the recovery time can be.

I am not ok with this being my possible fate but I’m not stopping what I am doing with my life to worry about it because I’ve recently taken on a full plate.

Busy keeps me from becoming insane with trying to find ways to control things that just aren’t controllable.

Then I’m insane from being busy.

From my getting fit file:

This week I learned that a newbie shouldn’t get on a treadmill and think that it is Just a Treadmill. I selected a setting and used it for my cool down. My thighs are still not sure that I’m not completely nuts.

Ah well Friday! Means sauna treat day!

The Enbrel Protocol

So I had to miss a friend’s wedding social last night but alas life is often a delicate balance between what I want to do vs what my body can take.

Doesn’t make me thrilled to have missed it at all because I’ve known the groom for years. He’s one of those friends where if  you need anything he’d be there to give a hand even if you haven’t talked in a year or two.

When I started Enbrel last fall I has a long list of things to do to take care of myself. One of these things was if I felt so much as a tickle in my throat or aches or anything that could be seen as a symptom of an infection I have to be seen by a Dr within 24 hours and I pretty much need to hibernate until I do see someone.

So here I am pretty much confined to the company of my family only because well let’s face it if I am infected then they are probably already carrying whatever it is that I have to share or because they are the outbreak monkey that brought it home.

I swear sometimes I think about investing in a nice bubble to keep myself in.

Of course this is all tied into being an auto-immune arthritic.

So in non medical terms…my immune system is bat shit crazy and thinks that I am a virus unto myself.

In return I nuke my immune system into complacency two times a week with Methotrexate on Wednesdays and Enbrel on Saturdays.

It’s a completely screwed up love/hate relationship my white blood cells and I have with each other. Sadly I see no happy ending where we realize all the good we love about each other and agree that we will get through this life together as a team. My immune system is going to keep trying to kill me whenever it can and I am going to continue to menace it with the finest pharmaceutical solutions Big Pharma can give me.

I’ve just realize that my immune system is the Moriarty to my Holmes.

I’m my own nemesis engaged in an eternal struggle of dominance…

I should have suspected something was up when I hit the wall some time Friday. I tend to push myself to the limit on a regular basis because I decided long ago that I was going to be the one to control my fate not my disease. It got to call the shots for a really long time so I figured it is my turn to call shots for a while and so I have but every once in a while my body asserts its will and when that happens I’ve come to term it as hitting the wall. Mostly because I seem to come to a dead stop in the middle of my life…like driving into a wall at NASCAR it is a complete stop.

So Friday I hit the wall and Saturday I feel the effects of it leaving me with no choice on Saturday night to enact The Enbrel Protocol of not leaving the house unless I absolutely have to until I can see a medical professional which is an adventure in and of itself.

I hate breaking in new Drs that are unfamiliar with my medical history, explaining that I have arthritis, that I have hip replacements, that I take Enbrel, that I take Methotrexate and all I really need it to be checked and prescribed anything if required. No, I haven’t got a fever and if I do you might want to add Prednisone to my prescription because fevers are not a sign of infection as much as it is a sign of flare up and inflammation. No, I don’t get fevers when I have infections because I am nuking the body’s ability to produce a fever as a sign of infection. Yes, I’m aware that exercise is beneficial to arthritis patients and I do what I can when I can. Excuse me Dr but perhaps before you lecture me on how I need to be doing more in your strong medical opinion that you stay up for 3 days straight with a side of stomach flu and see how much working out you get done cause right now that’s how I’m feeling like I haven’t slept in 3 days with side effects that aren’t fun for anyone.

I also don’t discount that there is always an emotional factor to my illness and when I hit the wall my emotions are always hightened. Mostly because I fear being back in the hallway…that hallway haunts me.

This past Monday’s episode of House shook me to the core which isn’t rare as it often does because well when your health has had House-ian moments it often can hit too close for comfort. If you haven’t watched and are a House fan spoiler alert for you. The scene where House tells Wilson that the chemo is killing him and Wilson tells House he’s not going to the hospital because he didn’t want to die there or in the ambulance was almost more than I could bare to watch. Kevin looked at me and commented that he’d been there and had a similar conversation in a time not too long ago and I cried uncontrollably.

Now time to rest, and recover which would be steps 2 and 3 of  The Enbrel Protocol.

Days of Octobers Past

This past year has been a year of milestones and anniversaries.

Last month I celebrated 15 years of being arthritic.

This month I celebrate 5 years when I almost died.

In October of 2006 our focus was on Ashleigh’s first birthday. We always do a nice bbq dinner with family and cake for the first birthday.

Then around mid-month I pulled my groin muscle. What I didn’t know then that I do know now is that it doesn’t take much trauma to the body to set off my arthritis when it isn’t under control. After the injury on top of everything else I started to develop the symptoms of what we thought was the flu.

The day after Ashleigh’s 1st birthday my mom took me to the St. Boniface ER where we waiting hours to see someone about the fever that wouldn’t break, the fact that I couldn’t bear to eat, and that it has been going on for almost 2 weeks. Longer than any flu usually goes without some sort of concern.

I can remember being in the hallway for days on end. I can remember the humiliation of folks staring at me and commenting on how they thought hallway medicine was over. I can remember the frustration of hospital staff as they pushed hard to get me out of the ER and into the General Hospital because technically I was a General Hospital patient who shouldn’t have been stuck in the ER hallway to begin with but there were no beds to put me in.

Just a hallway.

Never mind the humiliation that comes by having your Dr. consults in a hallway where you have no privacy, no expectation of privacy, and they need to confess they don’t know what’s wrong with you.

I can remember Kevin coming to see me on the hallway on Halloween and that he brought me a picture of the kids in the costumes before he took them out. I can remember clutching that picture after he left to my chest as almost a way for folks to identify my body. I can remember closing my eyes to sleep that night and thinking, praying to some invisible force that my kids would never found out I died in that hallway.

I did wake up the next morning and with that decided that I wanted to go home. If I was to wait things out I was going to wait for it with my family, in my bed…no more bad news in hallways.

Of course 5 years, 2 surgeries and 1 baby later here I am.

Frankly still pissed off just now I channel my anger into more productive things like arthritis advocacy and running for office to make change.

One thing I learned from my experience 5 years ago is how things can be spun. Wednesday during my week in the hallway I went to meet my family for dinner in the restaurant in the front of St. Boniface. When they wheeled me back to the ER my gurney had been wheeled into a room marked “Day Surgery Recovery” where several bays, separated by curtains held my fellow ER refugees. After my family left content that I was somewhere semi private I can recall drifting off to sleep hearing the announcement on the CTV News that the NDP claimed to have ended hallway medicine.

At 10 pm after the inspector has been through guess where I was….

How did you know?

Watching the Future

There’s a huge debate going on now about the need for clinical trials for MS Liberation treatment. I fully support the need and desire for this clinical trial to occur if only for the precedent this will set for those of us in Canada with incurable chronic diseases that we just have to live with because honestly we live in a state of trying to prevent further escalation of our conditions. In 5 years that could be an Arthritis treatment that the government will be denying someone like me who has two fake hips, working on two fake knees and watch my hands get less and less able everyday. I am at the stage in my life where my arthritis is evident on my hands and feet.

We aren’t being treated and we aren’t being cured. What we are getting are regimes of drugs that the medical community hopes to prolong our current quality of life for as long as possible. Disease progression can’t be predicted with any certainty and what is being called treatment doesn’t really treat anything. It’s a state of flux some days will be good, some days will be bad and all we really know is that you can slow things down with the right medication and sometimes the medication’s effects are just as harsh as the disease itself.

My other big issue here is that while the Health Ministers dicker about the possibility of clinical trials I’m watching an opportunity for my province to step up and lead by saying we’ll do this for you our citizens. Manitoba’s location could easily lead it to become a research capital in many fields but as per usual the current sitting provincial government does nothing to lead just remain status quo.

I am also blown away with the fact that my surgeon was allowed to take my hips after they had been removed for research purposes. I wasn’t asked, I wasn’t able to give consent and at the heart of the research these medical professionals will be accessing my DNA. I didn’t give anyone permission to access and study my DNA, heck no one even mentioned that it was a possible that they would use my situation for research. I would have consented to assisting the researchers, I would have consented to having them taking my hips and working on new treatments and new cures. I just wasn’t asked it was assumed that they could have ownership of them and do what they pleased with them. My husband found out when a nurse disclosed the information to him in an offhand manner.

So if adults can be used at test subjects and lab rats without permission and without informed consent why are the two levels of Health ministries having issues with a clinical trial composed of consenting adults who are looking for hope, looking for something that re-affirms that research is really moving forward and that new ideas are being explored. I think part of the problem is that none of these appointed ministers have lived themselves with any such deteriorating condition as MS, Arthritis, Lupus, or Fibromyalgia. They have no idea what it is like to lose hope, to lose your body and in some ways lose your mind. When you take on a condition like this you are never the same again but deep down you always want to have hope. Things will improve, there is new research being done all the time, that Europe will help to guide North America in patient care…these two level of government are killing people’s hope.

Dear Theresa Oswald, I am watching you on this issue because while I don’t have MS someday that could be me seeing a positive treatment for a disease that wants to cripple me, damage me, take me from my children, take me from my husband, and cause me great physical and emotional harm. What you do now in this situation affects how every advance will be treated by the province in the future. You are failing the people of this province that you are supposed to give the very best health care you can to. In 2011 I will be one voice out of many encouraging the people of Manitoba to FIRE you.

Dear Stephen Harper, I am not going to forget that you have more worries about a gun registry than the health of your people. You could stand up, you could lead this country but instead you’ve let your citizens down. The gun registry is not a hill to die on. When the writ drops I will be there with my voice to encourage the people of Canada to FIRE you.

I will be on the steps of the Manitoba Legislature supporting the MS Rally being held at noon on Monday September 20th. I will be standing solidarity with the folks that want clinical trials here and that want after care if they have already gone over seas for treatment that they have had to pay for. It shouldn’t be this way if there is a pool of subjects wanting hope and ready to try to advance a treatment that could give hope to every MS sufferer in the world. Why does governments want to quash hope?

My arthritis is genetic, my children are at risk and in 5 years I want to smile when I hand over the papers to my rheumatologist to consent to a new clinical trial that maybe saves my child from the fear of fevers, from the side effects of heavy medication, from the pain of a joint dying, from the addiction and cost of pain killers…I could go on. On my worst day prior to surgery and even before I had surgery as an option I had days where I thought about how much Percocet could kill me. I thought dark thoughts about killing myself and that my kids and husband would be better off without the burden that I was becoming. I never want to know that my kids have lost hope like I had.

I thank everyone with MS who is coming forward and standing up for their right to care…you are paving the way for the rest of us to enjoy medical advancements in a timely manner.

Tackling Allergies

Nathaniel was suspected of having allergies two years ago. So we got the referal to the allergist and then started to remove all the allergins we could find. Carpets were removed, cat was found a new home, and mould was irradicated. We even gutted the entire basement to clean out everything we could find that could be affecting him.

At the end of his first round of testing two years ago the call was mould. We’ve been as vigilant as we can be to keep him from being exposed until this past spring. Several times Kevin or myself have taken a call from Nathaniel’s school to run down and dose him with some sort of medication. We consulted with his ped and decided we would get him a follow up with the allergist. Now here we are 2 years later and the allergies have changed and now include cats and grass of all things. He also needs to see the allergist once a year from now on.

Now we play wheel of allergy medications. First we tried Aeris which is supposed to work for 24 hours and during Tae Kwon Do camp last week it failed to keep him from flaring up in hives. Yesterday I tried Benedryl Meltaways to control Nathaniel’s flare up at an outdoor birthday party and I won’t do that again. He was mood swinging from being surly and complaining to down right rude to me. We ended up leaving before the birthday child got to open all their presents because I could see Nathaniel ramping up for a whopper of a performance after I had told him to go sit on the deck for giving me huge attitude after I reminded him that this child in question has always been a gracious guest at birthday affairs at our house and deserved his consideration. I know that he was feeling like crap but I wasn’t having it because the day should be about the birthday child and it wasn’t unfair to expect him to be patient and give the same consideration he’s gotten in the past so we left early. I wish we hadn’t had to leave early but I know Nathaniel enough to know when he’s going to try and get as many adults attention as possible and this day and occassion wasn’t about him and I was damned if he was going to try and make it about him and his hurt feelings for being reprimanded for rude.

Getting home Kevin and I discussed what had happened including the surly, cranky, nasty, demanding, attitude he’s had lately. This was also behaviour that was seen during Tae Kwon Do camp last week. So now we have to wonder if it’s the meds because that is the only thing that is different in the last couple of weeks and while Nathaniel does have his share of attitude he isn’t usually a surly, nasty child.

So this brings us to a decision what do we do about meds now. The days of summer are short and it is essential for everyone to get out and enjoy as much summer as possible to move forward into the winter ahead. Do we return to the allergist and ask for a prescription and slog through the side effects and limited options that will give us? Do we keep trying various over the counter methods when we seem to be down 2 options and how long do you play roulette of medication before you need to go back to the allergist for no doubt prescription medication?

I was lucky enough to get a bit of Claritin from an old friend to try on him and I hope it works. It’s bad enough that he has a grass allergy but as a parent it is our job to teach him to manage his allergies and not put himself at risk. However, how to do you tell your 7 year old not to run in the grass, not to play tag, not to sit under a tree on a warm day and enjoy those classic kid moments.

Might as well tell him not to breathe.

12 Months

I’ve been having some real emotional issues these days. It’s really ticking me off because I often expect that I should be beyond sitting and crying for no reason. Turns out as Kevin pointed out that maybe there really is a reason for it after all. Still a piss off though.

A year is a short amount of time in the span of a life. A year ago we thought I had the flu, that I had caught something from the hospital as there was some H1N1 outbreaks in the hospital where I had Nicholas and we had to stay there for 3 days due to his heart murmur. I didn’t have the flu though for the second time in my life I tried to become one of the rare folks that can actually be killed by an arthritic flare up. It’s rare but it can happen and for 3 months last summer I barely functioned. I managed to get up with Nicholas in the middle of the night, change him, feed him and then tuck him back in the crib before falling into bed, fever breaking, sweat pouring and as it wore on wishing there was some end to it all. It was the most I managed to do all summer. I couldn’t eat, I shook all the time, I was either freezing or sweating. At one point I said to Kevin this is just like last time and he said not to buy trouble…maybe I should have been more forceful instead of dancing around tests and guesses.

I’m now officially afraid of fevers. If I never have another one ever again I can’t say that I would miss it.

Things are further complicated by the fact that as I watch Nicholas toddle and talk I don’t remember that time with Ashleigh. October 2006 I had my first severe flare up and it lined up with Ashleigh’s 1st birthday. I barely held on for Ashleigh’s birthday and if it wasn’t for Kevin there might not have even been a party to speak of. 10 days after Ashleigh’s birthday I was in the ER hallway of St. Boniface hospital wrapped in fever with Drs having no clue what was wrong…just that my immune system was insane. After I came home things are fuzzy. I can tell you that Ashleigh couldn’t be without Kevin for a long time. He’d go to shop for food and leave her with me and she would cry until he came home and it made me cry for my daughter to not have faith in me. I can tell you that she was eating more solid food. I can’t tell you when she said mom, when she walked full time, how her escalation of language went on, what her favourite stuffed animal was …I could go on.

So now I wonder if I have combination mother guilt and trauma flashbacks.  I also wonder if I can ever get passed it.