Today I Am a Grown Up

When I was young, I was very disciplined all on my own.  I would decide on something and then make it happen.  One year I wanted to be able to do the splits so I stretched for 15 minutes every night.  I think I was about 13?  One summer I wanted to be in good shape so I worked at our half mile laneway until I could run it, both ways.  Maybe I was 15?

When I was about 14 I decided I wanted to be  a better writer.  I made myself write every day.  Before I let myself go to sleep at night, I made myself write.  It was really kind of a journal of my life, but in short story and poetry form.  I wrote into the Western Producer and some of my work got published in there.  I still have the clippings.  It made me so proud.  But it also helped me make sense of my world. 

Yesterday I felt like a grown up, for the first time really.  I felt tired and worn in a way that sleep can't fix.  It was one of the longest and hardest days of my life.  It turns out that I still try to make sense of my world by writing.  But some stories are not mine to tell.  My emotions have no right to what I see.  The way I feel merely dips a toe into the pool of grief.  So I write. 

Quiet

 

The quiet seeps in,

For months the quiet

licked at the doors

surrounding the six

Until the quiet retreats

 leaving them five.

 

The hollowness surrounds them

mired in their souls

Heavy hearts and feet

trying to fill the space

the quiet left behind.

 

Memories of happiness

are all that is left to find

Joy eludes, it's return unknown...

The quiet retreated

and left them five. 

 

As we enter into 2014, hold your loved ones close.  We only have a tentative grip on what we think is our life as we know it.  Don't pay this lip service.  Instead of focusing on the external, like a new diet, maybe resolve to cook with your family each night.  Planning menu's, shopping trips, learning new skills, trying new recipes and preparing meals together accomplishes so much more.  And probably accomplishes the weight loss goal in the process. 

 

The things you have no time for are your choice.  Don't make the assumption that because you are there that your family knows you love them.  Tell them.  Make 2014 the year that your family learns and believes how much you care.  They are not one in the same.  Make them believe.  (This is especially difficult with teenagers.  I know I have two and they don't see any value in anything I say.  Getting them to believe is the hard part.)

 

I believe in humanity.  I believe in hope.  I believe in trust.  I believe in spirituality. 

I believe in love. 

 

Happy New Year Everyone! 

Danah 

 





Without Me

This year I looked at things in a different way.  And I have learned a lot.  Being sick was truly an experience that, although if I get through I never want to do again, that has changed a lot in my life.  It has opened my eyes to what I thought I knew some of.  And it turns out I did know some, some I had no clue about. 

This is one of the things I did not know.  Roles in a family are not static. It may seem like I was a bit on the slow side not to realize this, but I didn’t.  I saw my role as a wife and mother as something that was unchanging.  You are always a wife and mother right?  You know why young kids don’t want their mothers to leave their sight?  It’s because they sense at an instinctual level that mother figures are the glue that hold everything together. 

I thought that even if I couldn’t do the meal cooking or the cleaning that I would still be a wife and mother right?  Wrong.  What ends up happening is the kids (teenagers in my case) begin to look after themselves.  They cook a few meals, make their own plans and start telling you what they need you to do.  “Come pick me up at six.  Don’t forget and if you are going to fall asleep, be sure to set your alarm.”  Poof there goes my hold the kids. 

“I need you to sign this, no I filled it all out, you just need to sign, it’s for my field trip remember?”  “I’m leaving at eight.  Don’t forget.”  “I just cleaned the microwave; don’t forget to put a cover on stuff.”  “I need more hangers, I just finished the laundry.”  Poof there goes motherhood. 

My mother reads this so I can’t go into what happens to the wife part but rest assured it suffers.  Everyone is doing their best to get through.  And I will be forever grateful for how my family has pulled together.  I am amazed at how well my husband and kids did with everything that needed doing. They did all this while going to school, work and attending to the rest of their lives. 

I saw my control slipping away.  And it scared me.  Really scared me.  On days when I didn’t feel like death warmed over I noticed that they seemed to need me less.  The kids started getting Derek to sign stuff.  They all started to make their own decisions without a consult.  That felt odd. 

We all know that being a wife and mother has a certain element of control that most women I know have.  Some women won’t let their kids do laundry or dishes because they won’t “do it right”.  I was never one of those women.  I thought that if something was done wrong, it meant they needed more practice.  But it still felt like I was slipping away.  Not something that I would have thought was going to happen. 

I am really glad that I taught my kids a lot over the years.  My kids knew how to cook and do laundry.   I didn’t have to teach them while I was sick.  The one that I dropped the ball on was my husband.  I did the shopping and the banking.  I did the meal planning.  I made the phone calls.  I organized.  He had a lot of things to learn.  And I had to learn to let a lot of things go.  I installed the same password app on his phone as mine.  I copied all of the passwords to his phone.  It became apparent to me that I had to adapt. 

We say things like “I don’t know what they would do without me.”  “This family would fall apart without me.”  I realized that my family should be able to go on without me.  In fact that should have been my goal.  It was with my kids.  I was preparing them for the “real world”.  But my family was ill equipped and it was my fault.  I hope that now that I have learned these things that I can move on to teaching my family.  They need recipes written down.  Pictures organized.  Old stories retold maybe recorded.  My husband needs to know passwords, where our insurance policies are and everything else it takes to run this house.  I need to let go. 

I have to teach my family how to go on without me.  My family should not fall apart without me.  They should be able to pull together and do everything, and I do mean everything, that needs doing.  I hope it doesn’t happen for a long time, but none of us know when that is.  We all need to face the reality that our people are going to need to know how to function without us.  Make sure they know how. 

Hidden Wisdom-Really Really Hidden

And here I sit.  Friday night in old lady town.  The line starts just behind me.  Oh wait no line, I'm in bed at 8:10.  And actually quite happy about it.  I have apparently reached the age where this is a pretty good night. 

Sometimes I think back over the years.  When I was young and in an endless pursuit for fun.  When my kids were young and I questioned whether or not I would ever have fun again.  When I worked to build a business until the days ran into each other and my world was about other people having fun.  And now I sell insurance which is the kill joy of everyone else's fun! ( LOL Kidding.  I really like my job.)

Life changes on us and we lose track of time.  I never notice it until there is a milestone with the kids.  This week my youngest passed the test for her learners.  I can't figure out where the time went.  I know we all go through it.  My parents said it and I'm sure their parents did.  When my boy got his licence, it seemed like life sped up.  Now as the second one draws closer, I think we will be going at Mach speed. 

Graduations, wedding's, first born's you name it.  All the stuff I never really gave much thought.  This is the crazy part.  I feel just as clueless as I did before they were born. 

I still say stupid things, get pimples, lose my temper, cry for no reason like a teenager.  I always thought I would get wise and respectable.  Instead I'm me.  LOL

I am on a mission to think in a more positive way.  To live without judgment.  I am hoping that it will continue to open my life up to opportunities.  I am pretty sure what I am going through now will end up helping me along the way.  Maybe I will end up wise...

It sounded better in my head!

I know lots of you have been asking about how I have been doing.  Here is a brief update.  I have tried Lyrica which does appear to help with the pain some.  I have been able to sleep now with some night time Tylenol or Advil and the opposite in regular whatever.  (Do not try this at home.  After 20 years of migraines, I consider myself a professional.)

My tremors are the same or worsening it depends on the day.  When I am really tired the tremors get worse.  My shoulders come up off the bed, my knees will lift.  Sometimes it’s like I have a contraction in my stomach (?)  I know it sounds weird but this will pull one leg up and the opposite shoulder towards each other.  Like a sloth doing criss-cross crunches.  I tell you this for three reasons, one to let you know how I am doing, two let you know what I am doing if you see me in public flopping like a fish and three to explain the following story. 

 As you all may or may not know, I am very involved in a charity called “Forever Friends of Hope”.  We had a large function on Thursday night.  It was awesome.  We had entertainment, a fantastic meal, beautiful prizes and a great time! We had a great turnout with lots of the partners of FFOH.  These are people that have worked with us in the past, like Helen from The Pink Tree in Regina. 

One of the women that attended is active in the Saskatchewan Breast Cancer Connect.  She will know who she is.  She is a wonderful and gracious lady who approached me to ask how I was.  So I told her.  I was explaining the tremors and how animated I get when I relax.  I have always had a sense of humor and this time of my life is no exception. 

So here is how it went down.  In my head at the end of my story, I sarcastically said, “I must be really relaxing to sleep with.”  What came out of my mouth was “I must be really good in bed.” 

I have embarrassed myself before.  I will again, I’m sure.  But I wanted her to know that I usually hide my perverted sense of humor a little longer. 

Have a great day everyone!

Solving Life's Problems

I heard a lot of hubbub over the last major holiday we had, you know, Halloween.  Stores were filled with decorations, kids have to have store bought everything and the days of being a punk rocker or a hobo are long gone.  There was not a paper bag robot to be seen.  Naughty sailor outfits and vampires lined the shelves.  Gluten free and peanut free snacks were in every home.  Our culture says Merry Christmas with controversy but can dress up like a naughty police officer and celebrate a pagan holiday with no problems.  And the hottest question debated was "When is a child to old to trick-er treat?"  Seriously?

I have no desire to enter a debate about things.  I grew up in a time of homemade costumes and trick-er treating from farm to farm because that was our community.  We were not allowed to go in town.  We were allowed to go out trick-er treating until we were 12.  And our parents let us take a bar of soap and write our names on windows of homes if the people were not home.  This is because we knew our neighbours.  And a prank was harmless and funny for all involved. 

Here is my view of Halloween.  We have made it a shopping holiday like all the rest.  Extravagant decorations, perfect costumes and not a homemade treat in sight.  I live in a small town.  I do not believe that the average person that is on the library board with me is going to put a razor blade in my kids treats.  I know, I know, in the city we can't trust anyone. Razor blades and horror stories unite!  Maybe we should make it a practice to know our neighbours so we don't put our children at risk.  Maybe just maybe, if we met our neighbours we could let our children out to play street hockey again. 

But alas, I digress.  I was going to solve life's problems.  Here is how you know if your kid is too old to trick-er treat.  When they are smokers.  If your child takes a pack of smokes with them when they leave the house, costume or not, they are too old to trick-er treat.  Period.  I watched a pack of older teens come down the street trick-er treating in the local businesses and one of the girls could not go into our towns bakery because she had a smoke hanging out of her mouth. TOO OLD. PERIOD!  And I knew I had solved the only apparent problem of Halloween.  

The end.

Vegetarian Meals, I think not!

So I thought that I should update everyone on my update free zone.  The doctors have run pretty much every test that a neurologist and rheumatologist can come up with.  I still have a few more to go and then after that, a second opinion I guess. 

The latest happening in my fun wander through the system is that I have exceeded my drug allowance for my year.  And my pain pills are apparently $141 dollars now.  We live on a budget.  That took up the dog food, entertainment, and half the grocery money.  So if you see one of us on the street please do something entertaining so we have something to talk about and then slip us a can of dog food. 

One of the things I started doing even when I was working was planning our meals.  I found it so much easier to come home and know what I was making and have all the ingredients I needed.  Occasionally I get too lazy to do it and then spend a week hunting for ingredients.  And then I remember how easy it is to plan and I begin again. 

We get our meat from the farm.  We are lucky to get this.  Sometimes we run out of meat before the next beef is ready.  When this happens we eat more chicken and fish.  This time I planned for a vegetarian meal.  Apparently I broke some sort of meat lover’s law.  It was called Popeye Pasta in one of the Company’s Coming cookbooks.  Angel hair pasta, roma tomatoes, feta cheese and spinach, yummy stuff.  My son looked at the meal and said “No meat!  Is this even food?”  My daughter said “You know what would make this awesome, chicken and bacon!”  To which my husband responded “ Sounds like some people need jobs!”

He sounds all supportive this time, but a few years ago I ate vegetarian burgers some times and I enjoyed them.  So I brought home some tofu dogs, and veggie burgers for supper.  I didn’t tell anyone but just put everything on the table and everyone started eating.  The kids were eating the hot dogs not saying a word.  My husband says “What’s wrong with these hotdogs?”  I replied, “Nothing” coupled with a “look “, which apparently he missed because he took another bite and said “Seriously are these old or something, they taste weird.  Should we keep eating them?”  I replied with a nastier “look” “I tried a different brand.”  Response, “I don’t know about these.  What do you think kids?  Are these okay”

Stopping half way through eating the kids said, “Yeah these do taste weird.”  And they stopped eating.  So I had to admit to the tofu dogs mostly to get my husband to stop talking.  The kids could not be talked into another bite.  And my dream of healthy eating went up in barbque smoke. 

 I wish everyone a happy Halloween!  Have a great day!!

PS We really don’t need dog food but the entertainment can’t hurt!

The rest of my story

By Sunday, I was so sick I could hardly stand.  On Monday I got a visit from my rheumatologist.  Again no diagnoses.  However at this point after a consult they decided to decide on a prescription.  I was taking one of my migraine pills every 12 hours.  At least at that point they worked. But I was still very, very sick.  They gave me gravol before and after they gave me my Celebrex.  At that point I decided that my nausea and stomach trouble was being caused by the Celebrex. 

At first I didn't know for sure.  I thought the spinal tap could have caused some of the troubles.  But I decided to not take the Celebrex and see what happened.  If I got better, Celebrex, if I didn't, spinal tap.  I'm no doctor but for me, that made sense.  Luckily the other doctor stopped in and I told him that I would not take it anymore.  As the hours passed from my last one, I got stronger. 

On Tuesday, they sent me home.  Significantly sicker than the week before when I went in. 

It took me two weeks to recover.  And if left to the doctor's I still wouldn't be a good as I am.  I had to double my dose of medication they gave me just to get my migraines under control.  I was supposed to have an appointment on the 23rd, but the specialist's receptionist called to tell me that my appointment would be a "waste of time" so I was obviously on my own.  Desperate times for desperate measures.  (This is not a practice I am recommending DO NOT TRY THIS AT HOME)

And again here I sit.  Because I am continuing to get worse I am not once again unsure of how to proceed.  I am going to be contacting Patient Services today in order to find out what I should do next. 

This has been a very humbling experience.  I have learned something.  I was watching a taped Oprah's Lifeclass.  She had Dr. Brene Brown on the show discussing vulnerability.  It was an amazing experience.  I would recommend anyone watching it.  I made my husband.  And he didn't hate it.  It was basically about opening yourself up to the people in your life that will love you because of your shortfalls not in spite of them.  One of the things they talked about was people that help others, without being willing to ask for help themselves.  I was actually waving my hand in the air. 

Why is it that I have no problem being the person that does all I can for others, but now that I need help, I feel horrible to ask for it.  You know why, because I think/thought that people would think less of me if I asked for help.  Think I wasn't tough, like I was looking for sympathy.  And watching that I realized that I am screwed up. 

Dr. Brene Brown said that if we give help but won't ask for it, that means when we are giving help we are giving it with judgment.  And because we are judging others while helping them we are then not wanting people to judge us when they help us.  So we ourselves don't ask for help.  How messed up is that.  And it's true.  Not in a bad way, I have never felt like I judged people I helped.  But I realized that on at least some level, I thought it was true.  That people would judge me if I asked. 

I thought about that a lot.  Then I watched it again.  Then I started to let that go.  I have asked my friends for books.  I have let my Aunt bring veggies and pie to my house for supper.  I did not clean when my friend stopped by for a visit.  And I did not die.  I decided that if I can only sit/stand for an hour, I would rather spend the whole hour with her, not half cleaning, half visiting.  And I'm pretty sure she will come back. 

If you get a chance, you can also watch Dr. Brene Brown on YouTube in a "TED" talk.  20 min, she's very funny and its worth the time.  Especially if you are a person opposed to letting people into your life for fear of rejection or judgment.  And even more so if you think you aren't, like me. 

http://www.youtube.com/watch?v=iCvmsMzlF7o

Let me know what you think.  Thanks for your time.  It is precious and a gift I truly appreciate. 

Broken or not, this health care system is our system.

And here I sit.  In a spot I never really thought that I would be.  Laying in bed on a Wednesday.  I got dressed around 3:30.  I thought the children would appreciate me dressed in real clothes for the first time in a week.  But I am ahead of myself.  We will go back in time about a week to begin this part of the story. 

Last Tuesday I had an MRI in order to try and figure out what is going on with me health wise.  Because I have had lots of pain with several neurological components, I have been doctoring for over five months.  The Dr who ordered the MRI told me to call his office the day of the MRI and book an appointment to get the results two days after.  So Tuesday morning I called his office.  His receptionist told me I could get in in five weeks.  Five weeks! After all of this the worry and the stress-five more weeks.  It was more than I could take. 

My husband and I decided to visit the ER on Thursday at about 12:30.  We sat for 4-5 hours in ER and then got moved to a room.  About 11 that night they decided to admit me. 
By Friday morning I had a visit with the neurologist and an internal specialist.  In the first few minutes the neurologist did a spinal tap, which wasn't as bad as I thought, and I had the results from my MRI.  The internal doctor who admitted me came in an did and exam that probably was a little too much right after a spinal tap but how was I supposed to know right?  He was checking my strength and resistance in all of my muscles.  Not quite the "lay as still as you can for at least an hour" sort of thing.  But again, how am I, who has never had a spinal anything before, to tell the doctor-and he knew I just had a spinal tap,we talked about it-that I don't want to do these exercises right now.  If you live in Saskatchewan and you get a specialist to see you, you don't want to waste the opportunity. 

I found out at about 2 that they had decided to put me on Celebrex.  I found out at night that they stopped my migraine pills, cold turkey.  They suspected that maybe the pills were causing some of my neurological symptoms like the hand tremors.  The result was crippling nausea by 4 and a blinding migraine by 10 PM. 

By Saturday morning I took another Celebrex at 10 and threw up on myself by 11:30.  (And the gravol they gave me to help my stomach. After that IV only.)  My husband helped my shower after about and hour hoping it might make me feel better (and smell better !)  Instead I almost passed out and sat in the shower room with a garbage can on my lap until I could walk the few steps to my room. 

I had forgotten how rough my migraines were.  They suck.  I was taking copious amounts of painkillers and it wasn't helping.  They gave me gravol in my IV,  two T3's, a Tylenol and 600mg of ibuprofen, one of my migraine pills that I take as soon as I can feel a migraine coming on and finally Morphine which thankfully finally put me out.  All between five and midnight. 

I will leave you with this.  Because I didn't get out until Tuesday, it would be very long if I wrote it all at once. 

I also do not write this in criticism of the amazing care I received.  My nurses were great, my room mate...not so much...and the doctors do the best they can with what they have.  It is not anyone's fault that some tests take five to six weeks to get back.  I don't understand how exactly it works, but no one goes into the health care system to make people feel worse.  They go into it to help.  It is what it is. 
Broken or not this health care system is our system. 

Guilt

I think the biggest shock to me through all of this is the emotions that it brings up.  There is frustration at the health care system.  Anger at the cavalier attitude that the doctors seem to take.  Fear of the unknown.  Embarrassment of my now weakened body.  Sadness at the mobility I have already lost.  Uncertainty of what is about to happen.  Relief that whatever this is, isn't worse than it is. 

But what I was very unprepared for was the guilt.  When I was a teenager, I used to say "Guilt is a wasted emotion. There is nothing you can do about it so you are wasting your time feeling guilty about it."  I have held that belief through the years.  I have always tried to live above reproach.  Trying to make the right choices, do the right thing so I don't have to feel bad about my choices.  Didn't always work but I thought I was doing pretty good. 

Here is the part of guilt I didn't get until now.  Almost 39 years old and I am still just figuring this out.  Sometimes the things you feel guilty about are not your fault.  They are completely out of your control.  And because there is absolutely nothing I can do about it, I feel guilty. 

I feel guilty for not being able to do my job in the manner that I am used to.  I feel guilty that my husband and kids have to walk beside a scooter in Walmart.  I feel guilty because at work we take turns working Saturdays and I can't take my turn.  I feel guilty that I can't walk my dog like I used to.  I feel guilty that I can't open the dishwasher detergent anymore.  I feel guilty that I need help.  I feel guilty for not being able to do what I usually do with Forever Friends. I feel guilty for the education I have taken and now can't use.  I feel guilty for feeling guilty. 

I know that I shouldn't feel this way.  My brain knows that I shouldn't.  I could not ask for more support from my family and co-workers.  There is no reason that I should feel this way.  But I can't help it.  I did not expect this to be my life.  I know that no one ever expects it to be them.  We take our health for granted everyday.  I was no different.  I just had no idea that this overwhelming feeling of guilt would run so deep. 

And the guilt goes on.
And the guilt goes on. 

Confusion and Healthcare

I haven't had much time to consider what all has been going on lately.  Which is kind of odd because not a lot has been happening.  I left you all with a lot of information on rheumatoid arthritis.  Because that was my original diagnosis.  As soon as he first doctor told me that, I was pretty quick to do a bunch of research, find out what to do, how to help myself and go from there.  I was ready to deal with it. 

Then the rheumatologist told me that she didn't think that I had RA.  She said I was in too much pain for RA, too much generalized pain.  Not just around the joints.  My hips, knees, and ankles hurt every day all day.  My shoulders, elbows, and wrists hurt some of the time.  Mostly when I have to use them. Proof that hauling my fat ass around is harder than holding my head up.  LOL

So the hunt began again.  What have I got, where am I headed.  What does this mean for my family and myself?  So all I know now is that I have a autoimmune disorder with my connective tissue.  She sent me for blood tests and a bone scan. 

So in my frustration, I thought I would go to the emergency room to try and get some help.  Since the 21 of March I have limped with pain in my hip.  The pain has spread throughout my body.  I have tried several different pain killers.  As my pain increases, so have my prescriptions.  Three weeks ago, I started using a cane.  To me, it has come to an emergency. 

I spent 24 hours in two different places.  Gave a whack of blood, saw a neurologist and was sent home with an MRI marked urgent in 2-7 days.  It turns out that my MRI is actually in 3 1/2 weeks but hey who's counting. 

So tomorrow back to the rhuematologist.  At the very least I am hoping for better pain pills. 
Fingers are still crossed for a freaky jungle flu that can be cured with a pill...

After my long awaited appointment

I have decided to revive this platform for this blog.  Although I know that most people that read it also read this.  However if people who don't know us, find the FFOH blog, I don't want them to be confused by what we do. 

So here is the update on my rheumatologist appointment.  She doesn't think I have RA.  Which is good,...I hope.  She thinks I have something that mimics RA.  I have a lot of muscle pain.  Too much apparently for RA.  The pain is throughout my body.  More noticeable in my bottom half because it is load bearing.  (And with all the weight I gained on my last migraine pills its quite a load.)  My spine and neck are good.  So that's good.  Almost everywhere she touched, hurt.  She asked a ton of questions and took a lot of time with me.  I appreciated that. 

She knows it is an autoimmune disease.  However, she thinks it is more to do with soft tissue than just joints.  There are beginning deterioration in both hips and both knees.  Apparently with RA flare ups are different than just the constant overall pain that I have. 

She gave me a different anti inflammatory which seems to be helping.  She said not everyone can use naproxen.  Apparently I am one of them.  That would explain why they never helped with my migraines when I was prescribed them.  She is sending me for a bone scan.  She sent me for a bunch more blood work.  So now we are back to the hurry up and wait part of the health care system. 

When I had a name to research and learn about, I felt better.  I felt more in control.  I had something to work with.  I was already getting my head around it.  Now I feel pretty lost again.  One thing stood out in my mind.  Everyone I talked to physio, etc.  told me that I needed to slow down.  That pushing through the pain would cause more damage.  But she told me that with whatever this is, that it won't matter.  She said not to do things that hurt but pushing through and trying to ignore the pain, is fine.  It won't matter.  That scares me a bit.  But at least I got a disease that suits my personality.  I guess I'm good with that. 

Thanks for reading.  I know that you all care or you wouldn't bother to share precious time with me.  For that I thank you. 

RA and me

I have been absent for a while.  I know it but I have really been struggling with this one.  Mostly because I am sharing once again with the world.  I have shared a lot of what FFOH does, a lot of what I do.  Just a lot of my life.  Some of you that follow this blog know that I have had migraine's for years.  I finally after 20 years go them under control.  I was relatively pain free for 6 1/2 months. 

I was in Humbolt for the last of my CAIB courses.  I sat on the bed in a hotel room with my knees up studying for 8 days. On Thursday my hip was stiff and kind of sore, but not that it would slow you down.   I wrote my test on Saturday morning and got home just in time for the auction.  I was dressed in my '80's garb and high heeled boots.  I lasted until about 10 in my heels and my feet hurt so I swapped for my flats.  After the auction I stood bent over a table for about an hour and a half.  And then we went to the bar and stood for another hour.  By the time I got home, my hip ached.  Really hurt.  We cleaned up the next day and I was limping.  Chalked it up to sitting in the room reading for  and then being bent over for so long. 

And then it continued to hurt.  It hurt for 4 weeks so I made a doctors appointment.  They sent me for X-Rays and blood tests.  Then they called me to come back.  That is never a good feeling.  It was a long week to wait. 

Then they told me I have Rheumatoid Arthritis (RA).  I have marked degeneration in my right hip.  Since then it has also affected both hips, my knees and ankles. 
And a diagnosis changed my life. 

I have worked with women with cancer for 11 years.  I have never had it.  I'm not a survivor. I never really understood the emotional side of a diagnoses.   I don't do well with the emotional side of anything actually.  But I finally understand.  Well a bit anyways.  RA isn't life threatening.  So it still isn't exactly the same.  But it is life changing.  

I have always worked hard.  I try to always be the first one in and the last one out on anything I do.  Being told that you have to slow down was not something I could get my head around.  I have been incredibly tired lately but wrote it off as a side effect of the migraine pills.  But now I had a reason. 

They have prescribed me increasing doses of pain killers.  Anti inflammatory drugs designed to reduce the inflammation in my joints which can also cause stomach ulcers but right now that is the least of my worries.  They initially told me that the wait to see a rheumatologist was 5-6 months. 
However, the physiotherapist and my doctor built a case for me and got me an appointment next week.  For that I am grateful.

RA is an auto immune systematic disease.  It is not "my knees get a little stiff in the morning" kind of arthritis.  This is how it works.  My body has decided that my joints need protection from an imaginary threat.  My body is trying to immobilize my joints in order to stabilize them.  Then it sends inflammatory cells to my joints.  The more I do, the more my body send these cells.  These cells if you are hurt help heal you.  When you are not hurt, they act like acid on your bones.  My body is fighting itself.  In order to try to minimize the swelling in my joints, I am to do pretty much as little as possible because I am in what they call a flare up.  A three month long no end in sight flare up. 

I sit on a lot of ice in the evenings.  I am pretty good in the morning but at night it's not good.  I have found that I need a ton of sleep.  And if I nap in the afternoon, I can work a bit later.  And it hurts, all the time.  Even with the pain killers, it still hurts.  Sometimes I can barely walk.  Sometimes not to bad but there is no rhyme or reason to it. 

After the doctor told me what it was, I will admit, I was terrified.  Your mobility is something that we all take for granted.  Like any bit of our good health I suppose.  It took me a couple of weeks to get my head around it.  I shed some tears, freaked out a little and then came back to reality. 

I am grateful for it where it is.  It is not in my hands.  I can still write. I can still work although I am slower but I am still able to work.  And I have decided that it just hurts.  I am still going to be able to do all of the things I want to, just maybe in a scooter. 

I am not asking for sympathy.  no one needs to send notes of encouragement.  I don't write to make people to feel sorry for me.  I am just letting everyone know at once.  It is easier this way. 

I am writing to remind everyone that we are one diagnoses away from a huge change in your life, your beliefs, and your priorities. 

One diagnosis.