Tag Archives: health

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

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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.


Staring You in the Face

Since the mid of October my life has been in a rut and I’ll be honest I’ve been making half assed efforts to getting myself together.

In truth…I’ve been the poster child for frump-tasticness combined with how to put out a minimal effort on some things.

Of course in this life fortune often favours the bold and not the half assing it frump.

So after a couple of months of trying to find my bearings, attempted to find a path I could start down, a weekend project provided me with much needed meditation and a daily reminder of what a full effort can do.

RustOleum, makers of fine spray paint, put out a new kit recently that allowed for home improvement on the cheap folks like myself to reface their kitchen cabinets. Kevin bought the kit a few months ago, got the colour we agreed upon and it proceeded to sit there.

I guess I was hoping it would figure out how to do the project without my assistance. Like I was going to be able to magically find the force and Jedi my ass through the whole deal.

I’ve re-finished a couple of antique pieces in the past and I really enjoy the work. Taking a piece of furniture and seeing the potential and then getting it there…all things I actually enjoy but haven’t been able to enjoy due to life and a lack of space. Throw in the mentality of I don’t think I can I’m arthritic and my hands don’t work very well and it causes delays all on it’s own.

Tangent

I’m still dealing with the fact I’ve had to legally change my signature in the last month because it is getting too difficult to put S. Robert on the line or the fact that I find it quite hard to write for long periods of time and have had to resort from taking notes to recording and typing it up later. It’s not been helping my frumpy self feel empowered. Esp when folks keep asking if you need a pen or want to repeat that you really should be taking notes.

Tell you what I’ll take notes if you will let me tape all your fingers together on your dominant hand and you try to function that way for the rest of the day.

Enjoy that trip to the bathroom!

How about trying to work a knife or fork?

Perhaps you’d like to try using a gear shift or attempt to steer a car?

Yes, I know not a nice thing to type but I put it here because this is my safe space and because well I’m tired of explaining it to folks. I have a disabling disease so I have found other ways to deal with it and not let it get in my way. If that bothers you well it isn’t my perception that needs to be changed.

I, of course, never say these things. I do think them though and to be put on the spot repeatedly just makes me feel even more aware of my shortcomings. I don’t need to be reminded of them…I’m already very aware of all of them thanks.

It’s bad enough when I have to ask my husband to cut my steak at some restaurants…

/Tangent

So this weekend comes and yet again I swear I am going to get the project done but alas I find myself looking for reasons to not get it done. Kevin has learned the subtle ways to get me off my ass when pushing me will result in me pushing back at him rather than pushing myself further.

Tangent

Yes, I admit that I am partially at fault for my kids’ stubborn natures. Takes two though!

/Tangent

So Kevin removes the cupboard doors and the hardware off the drawers off our stand alone item and dumps the contents.

Well played sir…now it is taunting me.

So I review the instructions and start getting the items I need together to start working on this project. I’ve delayed enough.

O.k. so read instructions 50 times…check

Have paint brush suitable for job…check

Have items to do first step handy…check

On the floor ready to go…shit.

I’ve not really been down on the floor since Nathaniel was a baby. When my flare happened in 2006 I pretty much kept off the floor because, well frankly, I got stuck and had to helped up and my pride can only take so much.

In walks Kevin…cutter of steak, kicker of procrastinating rump, example of how to get down on the floor. So with some encouragement, and one slight panic attack, I get down on the floor and start the process of cleaning the cupboards.

Of course once started I felt the need to finish and the end result is that the cupboards are done and some much needed meditation occurred. In that meditation came the acceptance that I need to be pro-active about my life and frankly the only one that gets us out of any slump is us.

So at the end of Saturday I kept looking at my cupboard with a big amount of pride because well it looks pretty fantastic and because despite the fact that I tried to put it off I finally got some of it done.

This weekend….the piece under the sink gets done.