Wednesday, 25 September 2013

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.

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

Tuesday, 17 September 2013

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. 

Monday, 2 September 2013


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.