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

Lucky ’13!

We are all familiar with the stories about how unlucky 13 is considered to be. Not so much for us here in our home though. We have always considered 13 to be lucky for us.

When we were house hunting and despite the numerous houses we looked at and put offers on we eventually got a house #13 on our street. While our house has needed some love and care it is still the house we brought our 3 children home to and will probably be our home until such time as we don’t need to live here anymore.

Our 13th anniversary came after a double hip replacement and two years of Kevin handling everything and I suffering with pain and developing a dependency on pain killers. The hip replacements were needed after almost a decade after an arthritis diagnosis, dealing with medications and the ups and downs of learning to live with a chronic illness. Shortly after celebrating #13 we found out that our 3rd child would be due just before we celebrated #14.

So coming off of 2012, a year where we’ve had financial hardship, emotional hardship, medical tests and worrying about results, periods of marital stress and where it feels like I’ve lost more than I’ve won I was pretty happy to wave goodbye with my middle finger held high two days ago.

Goodbye 2012! Farewell! You won’t be missed! The Mayans might have been wrong about the end of the world but my world was rocked with trial after trial. Rising above again and again.

Frankly that routine gets old and I’m not sure about anyone else but I tire of having to rise up all the time. Some days it would be wonderful to wake up singing like an old Hollywood movie.

So here’s 2013 and shortly after midnight I mentioned to Kevin that 13 has always been lucky when it seemed like things were just not going our way. When we needed something big, something life changing, something life affirming 13 is part of the chain of events that push us forward.

Not one to sit and wait my first challenge of 2013 starts almost immediately. Saturday I am going to be sitting down and taking the series of test one takes to become a 911 Call Operator. I am thinking positive, I’m determined to pass the challenges and I am thrilled at the prospect of such a big change in my career path. My last few attempts at a career shift haven’t gone the way I hoped they would so I feel empowered to be moving forward and trying yet again to shape my life in a way where I help others. I find I like the idea of being the calm presence when folks are in need, it makes me feel like I would find my purpose.

So come on Lucky ’13! Time for the come back.

Christmas Time is Here Again….

There is fresh snow falling outside my window. Last year we lacked a really white Christmas and I can remember feeling so sad and lost without that dusting of snow. This year so far has made up for it and I have reacted in that oh so mature manner of grumbling every time I have to clean off the car. Which currently has been daily.

But with Christmas a week away and my stocking stuffers in Dollarama bags next to my desk I find myself realizing about the stuff in life that matters and the stuff that in 20 years no one will give two damns about.

It’s been a hard lesson I had to teach myself this year. To step back and not worry so much about how many gifts are under the tree, if they are big enough, fancy enough or good enough just that there is stuff under that tree come Christmas morning. I made it my goal this year to have only one really big Oh My Goodness gift and to have at least one second-hand gift for each of my children and I did succeed. For my 3-year-old his Oh My Goodness gift will be from Santa and I hope will fuel his spirit for his deep delight in the jolly old elf as his energy and excitement certainly lit my holiday joy this year.

It’s been a tough year and I have been trying like crazy to get perspective on everything. Christmas seems to amplify the stresses that already exist as a parent and while you can say no on a day-to-day basis for every whim and desire that doesn’t fit the budget you have to live and die by Christmas makes it harder.

I’ve been reflecting on the fact that as a kid I never knew we didn’t have much. I know we didn’t eat out every night and probably ate more than my fair share of fish and peas but I didn’t see myself as lacking anything and yet I spend many hours of my life worrying my kids don’t have that same innocence about them. We have a roof, we have food, we have treats, clean water, heat that turns on when it is cold, and there is never lacking for things in our tiny home. Sadly these things don’t often strike a chord of how lucky you are when you are 3, or 7, or 9. Even if you have parents to remind you that somewhere in your city is a child who isn’t cared for as much as you are.

One of the joys of childhood is that you can engage in the ID of I want it all, I want it now and I don’t understand why you just can’t give it to me.

I don’t sugar coat it for my kids…it’s just not in the budget right now I’m sorry.

Oh how I tire of those words coming out of my mouth though.

It isn’t like we haven’t tried to make being budget conscious fun. We’ve started Family Friday where we eat a fun homemade meal and watch a family friendly feature together on Netflix. We throw our rule of eating at the table out the window and eat on the couch and floor in front of the t.v. just hanging together and being with one another. So far it seems to be a success because of the fact that they kids ask about Wednesday what we are going to do for our Family Fun Friday.

So I guess in some ways we’ve been successful at re-directing the ways we have fun.

The thing about Christmas is you never want to have your kids build up in their minds something amazing only to let them down. My kids, for as tight as everything is, have been re-assured that everything is going to work out and that Christmas WILL happen. They just have to have faith in their dad and in me to know it matters and to make it work.

Sometimes though I don’t think they quite believe me.

Luckily I started shopping in August :D.

Introspection…The 6th Stage of Grief?

These are my grandparents. My grandfather passed in 1978 and my grandmother passed just this July.

I’m pretty sure most folks are familiar with the 5 accepted stages of grief. Denial, Anger, Bargaining, Depression, and finally Acceptance.

I seem to have found a 6th one…introspection.

Actually I am not sure I’ve even gone through 5 stages. I didn’t feel denial when my grandma’s condition was deemed terminal. I accepted quite quickly that this is what she expected us to do for her. I did have some anger but it was directed at the right people. I didn’t bargain with anyone other than my grandma to please pass as peacefully as possible in between spending time reading “cook Britain”.

I’ll admit to depression…that one I’m am dealing with still but I’m winning against it more than it is winning against me. I still weep when I think of things that I know sooner rather than later will be able to make me smile. I can hear her in my head a lot though and it becomes more comforting with each passing day.

So it would seem that I should be happily at acceptance or at least most of the way there.

I’ve been stuck in a place of introspection for about a month now and what I am coming to find is that as a mother I’m pretty sure I’m not as bad as I want to think I am, that I did truly marry well to the man that doesn’t just love me but accepts me for everything I am, that I deeply value being seen as a person with integrity and honesty, I balance family and career with more finesse than I expected I could and taking stock of the people in my life.

I’m realizing that I deeply want to be happy with everything I do and that I would love to use the skills that make me feel like I am helping people and making a difference no matter how small. I’m good at small details, connecting people in ways that benefit them, tackling problems and finding solutions. In discussions with my dad I’ve come to realize I’d be one hell of a Crisis Manager esp when it comes to customer relations/care/problem resolutions.

I’ve learned I want to live in the U.K. for a time and run a pub. I’ve added this one to my dream list.

I also want to start surrounding myself with more people who say what they mean and mean what they say because I believe in doing that myself.

Now let me preface where I am about to go by saying I’m not expecting the world to stop because I’ve lost someone. It is completely unrealistic to expect everyone to dawn mourning black and stop breathing because you have pain in your heart. This isn’t about folks not putting on large displays of grief about my loss what this was is about is discovering that maybe the deadwood relationships in your life aren’t the ones you think they are.

In my opinion simple words at times of loss mean more than large opulent displays. I often think of Charlotte in Sex in the City where at the funeral of Miranda’s mother she says of the flowers “They were supposed to say, “I’m sorry for your loss,” not “You’re dead, let’s disco…”

In the weeks following my loss I’ve gotten a really great idea about who walks their talk. I think I’m more surprised by the results as I have seen compassion from people I’ve know for years but never met face to face, people I am just beginning to build friendships with, folks I only know through Twitter, and folks I’ve only really known from a political environment all take a moment to offer me their thoughts and for that I thank them.

With all the support I got though I’ve found that I have never felt more friendless in my whole life. Where were the folks that said they loved me and would be there for me always? Where were the folks that told me we were a family? Where were these people that said we were going to be tight together?

If you know please do enlighten me because I’m still trying to figure it out.

I’ve realized I’ve tired of investing in relationships, both personal and professional, where folks think that the secret of life is to say things you have absolutely no intention of following up with. It isn’t something you can’t avoid, however, it is something that you don’t have to let history repeat itself about.

Fool me once shame on you (in one case to the tune of $12,000….yup that number still makes me ill).

Fool me twice shame on me for being a spineless twit who didn’t inform you this wouldn’t happen a second time.

Finally I’ve realized that I better stop and smell the roses and stop worrying so much about things that don’t matter. Watching Nathaniel at football, getting excited about Ashleigh’s first dance recital next month, and hoping Nicholas will cross over soon to being a potty trained human are the moments life is about. It had gotten to the point where I didn’t see the moments that make a life amazing until I looked back at them and I’m tired of having to look back to see the great things that make my life great.

 

 

A Simple Indulgence

I’ve got issues.

I often have issues with spending money on myself. Be it a gift or a need I will talk myself out of any purchase that involves myself.

When Kevin and I finally had our wedding almost 10 years ago I got a simple band that matched Kevin’s. It was something we could afford at the time. I told Kevin that he could get me diamonds when we reached the 10 year milestone. Even though we married with 7 years invested already 10 is still a major milestone for any married couple in my opinion.

However, the titanium rings we purchased 10 years ago no longer work as Kevin lost a fair amount of weight and his ring couldn’t be re-sized and as we no longer matched I turned my eye to a new ring for myself as well. However, I could talk myself out of every ring, every style and every price range.

Until recently when I found a little jeweler I never knew existed. Sutton Smithworks. I’ve had the pleasure of seeing their showroom and found a ring that I enjoyed visiting.

A lot.

So I recently took the plunge and told them what I had for a budget and what I really loved about the ring that had caught my eye. It was a trinity of stones collected together and they all complimented each other in such a wonderful way. That’s what I wanted as much as it can seem that we are abrasive to each other Kevin and I compliment each other amazingly and well three plays a part into our lives as we have three kids, live in a house numbered 13,  heck our kids are right now 3, 6, and 9 years of age so 3 is a number that weaves throughout our life together.

And they made magic happen. A ring that was just a picture I adored is now on my finger and I’m in love. It is my ring. Much like those TLC shows where they cry when the get the find the right wedding dress for them I know this is my ring.

My ring. Custom designed and brought to life by Sutton Smithworks!

So for the first time in a long time I got myself something that I didn’t really need but it was something that I really wanted.

Putting One Foot in Front of The Other

Pretty sure this could rate as one of the shittest weeks on the record of my life. What makes me laugh is I have made more than one in the span of my 37 years and this week probably makes top 10.

On the 21st I lost my grandma. Someone I loved very fiercely who was the centre of my developing life. I learned a lot about life, love, marriage and child raising in the confines of her Snow Lake home. I’ve taken the loss very deeply. I won’t lie as I have processed it a lot over the last two weeks but moment where I weep still come.

I remember all the really great and interesting stuff about her. I am happy she had a life she loved and I embrace those memories. Just not quite where they don’t cause me pain.

Tuesday I had to return to work. Alas mortgage, food and other payments don’t hold for our grief and my grandma was someone that would say that being busy was good for you. So back to work I went dealing with customers and projects.

Tuesday Nathaniel had his first football practice. He was so very excited to be on the field working towards learning what position he will be playing. I watched him work hard, proud that he was listening and trying hard to learn from his coached and put in a strong effort. I know part of him is in football because I, personally, love the sport and he’s trying to connect with me on that level. What he hasn’t realized that I hope he gets more out of it than my approval. Deep down Nathaniel has to learn how to function as a cog in an overall team dynamic. If he gets that from this season I’ll call it a great investment.

Thursday I stayed home from the Bombers home opener because I intended to be at Nathaniel’s practice. He asked me to be there and while I am a rabid fan of the Bombers, I know that he asked me because he needed me to be there for him. It was one of those times when being a mom mattered more than being a fan. Ashleigh went and spent the evening with her grandpa. They had an amazing time together.

More amazing than my Thursday turned out to be.

Thursday afternoon Nathaniel developed a fever. Nothing serious to start off with but as the night wore on it became more of a concern. At about 1 am we noticed he had a lump at the side of neck. In 2008 Nathaniel had this happen and when I took him to Children’s he was diagnosed with an infected lymph node. Upon discussion with Kevin I decide we’ll head to Children’s to be safe rather than wait to go to the walk in clinic first thing in the morning.

Get to Children’s, get checked, confirm that Nathaniel has an underlying virus and what the Dr is pretty sure is an infected lymph node again, get prescription and the requisite talk about what to watch for (Or as I am now dubbing it…This is When You Should Panic). Head off into the pre-dawn night and need to locate a bank machine so I can pay for parking so we can get the car out of the William Parkade and stop for small nervous breakdown.

I think the worst part of what I’m about to put here is that my pretty sick 9 year old had to deal with his mother weeping and having a small panic attack. Honestly, I’m pretty sure that is in the list of globally recognized mommy fails. I have no real defense other than extreme emotional distress.

The last place I really wanted to be was back at HSC not even a week after having lost someone I love dearly there. It’s not a reflection of the staff or the care as much as it is somewhere I lost someone I loved very much. Having to take Nathaniel there to deal with his health as emotionally raw as I am, as tired as I have been, pushed me very close the emotional edge. Having to enter the building through the same doors I entered for almost a week to keep vigil with my passing grandma, walk past the elevators that I entered more than once, knowing the space was so close, was more than I could bear. So I cried, so I tried to get my sick 9 year old to go as fast as possible to a bank machine and back out when he was tired, sore, feverish and sick. I was so distressed that he stopped me to hug me and tell he was sorry for being sick.

Shit.

Mommy fail on so many levels.

I don’t even think I could say I just have a history of having mental moments in hospitals where major life events happen. While I’ve broken down in Concordia (see post Phantoms Feb 2010) where I had my hips replaced I’ve never lost control of myself in St. Boniface, which frankly probably has more personal trauma attached to it than any other hospital in the Winnipeg City Limits, and I’ve been there often.

I’m sure someone would tell me that it was just too soon to deal with things, or that I hadn’t dealt with it enough it doesn’t make me feel better than I caused trauma to my 9 year old when he least needed it. I’m the mom I should have my shit together in these times.

Looking back at it Kevin would probably have been the better choice for this mission.

Hindsight really is a bitch.

After going to the bank machine and getting the car out of the William Street Parkade we head to the 24 hours Shoppers where I learn that while they are 24 hours Blue Cross direct bill is not. Come back in a hour and a half so home we go.

As Friday goes along we get medications going, children’s Advil keeps flowing and Nathaniel has good moments when the medication is keeping things under control.

My dad sits the kids Friday evening so Kevin and I can go out to a networking event. We go, we meet folks, we have dinner and head home. Check Nathaniel and he’s warm but good. We’ve got time to Advil so we relax and settle in for some t.v. watching. At 10 I go back to check and he’s spiked a good level fever.

Back to Children’s, back to HSC and the William Street Parkade for the second time in 24 hours we go. I was the DD for the evening so I get him in the car and we go. Much to Nathaniel’s anxiety (see mommy fail).

Turns out the virus he has likes to screw with us. As long as he responds to Advil we just ride it out.

I need to ride it out too.

Dear Grandma

Dear Grandma,

I’ve tried so many times over the last week to find the words. I’ve been at a loss to express what I’ve been feeling despite my ability with words.

I can remember how the trips to Snow Lake seemed to take forever and how my mom would tell me to sleep because the sooner I would go to sleep the sooner we’d be there. I used to always wake up at the same place coming into town which was driving  just past Elm Street (more popularly called Main Street) before starting down the hill towards Our Lady of the Snows Catholic church. I can remember how you would come out even at 5:30 in the morning to make tea and toast for everyone and that I would fall asleep to the sounds of you and mom talking at the table for hours after we had arrived.

I remember the Donald Duck nightlight tucked away in a drawer for me to get whenever I needed it during those tender years of being afraid of the dark. I can remember you reading in the twin bed just across the room from mine while my parents slept in your room. I can remember listening to you breath and being re-assured you were there. I’ll never forget how these memories swept over me when I put my head down next to yours in the hospital when I was so tired I couldn’t keep my eyes open.

I’ll never forget how I wept, overwhelmed by the fact that the sound of your breathing might not be a good thing this time. Eventually the sound of your breathing would breed a sense of empty hope for me because I desperately wanted your pain to stop and for you to have the peace you told me you wanted when your time came. I hope that over time the memories won’t be tainted.

I adore the smell of fresh baked bread, apple pie and muffins. To this day all these things make me think of you. Kevin recently started baking our bread and every time I smell it start to bake I think of the evenings you spent baking, of fresh baps and pie crust pieces dusted with cinnamon and sugar.

I remember how you came in 2006 when I was very sick with an arthritic flare and you baked. I remembered the comfort that came from your care then. I remember crying when you finally arrived after a bus adventure which included a door falling off.

I had the benefit of having a second home, a sanctuary in the North because of you. I learned the joy that is popcorn made on the stove top (that wasn’t Jiffy Pop) and watching Jeremy Brett on CBC every Friday evening. Over the summer I am hoping that Nathaniel and I can embrace that tradition. I remember watching Seeing Things, Hardcastle and McCormick and Airwolf. I remember life with CBC, CTV and if it was a clear night and we were lucky HBO.

I learned to swim in a lake and can still remember swimming from what seemed so far out towards your feet as you sat on the dock with them dangling in the water. I remember learning to ride a bike with no training wheels. How you always had quarters for the jukebox when we ate at the restaurant you always called “George’s McDonalds”. I remember fresh berries from your yard, raiding peas from other yards and blanket forts on the front step as the sun went down.

I was always sure that you loved me. I never questioned it. Snow Lake remains my sanctuary. My touchstone. My safe place and you made it that way for me. The north will always be my second home.

I already miss you dearly. Hell it has taken me days to put these words together and there is so much more I wish I could say but the words elude me.

You always said I never wrote you enough though you wrote to me every week since I was 4 or 5 years old.

Last week was the first time a letter never came for me. It was one of the hardest realizations of my life.

I love you and I’ll miss you always,

Me

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!

Unexpected Traditions

This may shock some folks but I spent Monday nights as a slip of a girl at Brownie meetings that were held in the basement of St. Ignatius church.

Yes, I was a slip of a girl once.

Yes, I used to be on church property and there wasn’t a bolt of lightning aimed at me. At least not as far as I know. There were a few dark and stormy nights in there I’m sure.

When I joined Brownies they became short a Brown Owl or group leader and knowing my mom had a long history of guiding it took nothing for me to volunteer her for the job. Of course I was good enough to give her a week’s notice about the whole thing.

So eventually our routine on Mondays was to go to Brownies together and then afterward we’d usually go to Pizza Place in Grant Park Place for dinner. It slowly became our tradition and it’s one that I still smile fondly about to this very day.

In recently months I’ve found myself with busy Monday nights again. I started a Mary Kay business in the fall and it turns out I’m pretty good at it. Weekly unit meetings are held on Monday nights, and for me at least, across the city. It puts a bit of a pinch in eating dinner together as a family but enter Perkins with the Kids Eat Free promotion.

Now our new tradition is to go together and enjoy a meal after which I proceed to head out the door to my meeting and Kevin and the kids head home for bath time and bedtime.

Often when we think of family traditions we think of those large occasions like Christmas or Thanksgiving but miss those little routines that sit at the heart of the family unit. Be it Sunday dinners, or family game night, or always having ice cream at the BDI the first day it opens or celebrating a new football season with a trip to the Whistle Pig…

O.k. that last one I’m projecting but hope to make it a new tradition starting this year.

I just hope someday my kids will look back and smile about Mondays at Perkins.

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.