Life's Path

Wednesday, August 24, 2011

End of May 2011

The morning of May 22, 2011, I woke up feeling not too bad.  I thought that maybe Glenn and I could go for a walk as it was a nice day out.  We were going to be babysitting the grandkids as their parents were going to be celebrating their wedding anniversary.  But by lunch time, things changed.  I was in pain and on the couch.  Maybe I just needed to rest some more.  The pain didn't go away.  Nicole came and dropped the kids off and I was hoping to get better.

Not long after the kids got here, I was in extreme amounts of pain with cramping in my belly and I was on the toilet.  I was screaming in agony and the sweat was pouring off my body.  Glenn was trying to see if he could help me, while taking care of a 4 year old (who was very curious and wanted to know what was wrong with Granny Red) and a crying 6 month old as she was not happy mom had left and was probably upset as well with what was going on with me...she could probably feel the tension.  It was awful, no other way to describe it.  Poor Glenn was going out of his mind...what does he do, how does he handle all of this?

In between my screams of agony, I suggested that we call his other daughter to see if she could pick up the kids and take care of them for the evening.  It was apparent that we would be going to the ER once again.  The pain was out of this world.  We finally got a hold of Jenna to come and take the kids and then we went back to the ER...remember, doctor's orders from Friday.

We go into the ER and we get the same doctor and nurses as we did a month earlier in the ER.  They focus on getting the pain under control.  They ask what has been going on in the month since I was last there and we give them the update.  FINALLY, I get some relief from the pain.  They keep me in overnight to continue the pain control and then release me as I have a follow up appointment with Dr. Zeeman in 2 days.  They figure let her try and sort it all out.

I see Dr. Zeeman on the afternoon of the 25th and she says that she is going to admit me to the hospital that night so that we can do testing on me and try and get to the bottom of all this.  I am!?!  Well, maybe this will help us out.  I go back to work, finish out the day and call the temp agency that I work for and tell them I will need a temp to fill in for me as I will be in the hospital for the next few days.  How ironic is that...a temp filling in for a temp?!? 

I go home, pack a bag and we head to the hospital.  I get checked in through the Emergency and wait on a gurney there until they find a bed for me in the hospital.  It is a long night but I think around 2 AM they take me upstairs to a room.  I am going to be the 5th person in a room made for 4.  I have an incredibly small and very uncomfortable gurney that I will sleep on, in a corner.  They bring in a small divider to try and give me some privacy.  They tell me as soon as a bed opens up, I will move to a bed. 

The morning of the 26th, I am taken down for a CT Scan.  Been there, done that.  No big deal.  Tomorrow I am scheduled for yet another gastroscopy and colonoscopy.  My second one in a month.  Oh the joys!  The days are long as I wait for visitors and for these appointments.  I hate being in the hospital...especially since I am jammed into a corner with very little room to turn around.  In the meantime, I am prepping once again for a colonoscopy. I so despise drinking that awful stuff and running to the bathroom every 5 minutes. What a horrible night again of prepping!

The 27th in the afternoon, I am taken down for my colonoscopy.  Now this is like my 4th one in 2 years so I know the drill.  The on call GI specialist is going to be performing my colonoscopy.  I go into the room where they start to prep me.  No big deal, done this before.  They give me the dose that is supposed to put me to sleep.  Nothing happens.  They continue to prep and the nurse looks at me and says "You aren't sleeping?"  to which I say "Nope"  I think she tried to give me some more stuff and I was still awake.  They start the procedure.  It was awful.  I was awake and could hear and feel everything.  My mind did shut me down for a little while and took me to a better place...funny how the body can do that.  But I came back and felt and saw everything again.  I told them that I was awake, was hurting and asked for pain meds.  They wouldn't give me anything.  I started getting distraught.  It really hurt and I could feel when they were doing the biopsy of my colon and I could see it on the screen which was right in front of my face.

They finished the procedure and I was a mess.  It was very disturbing to go through that, especially when I knew that I should have been asleep.  I asked for pain medsmeds and it hurt so much and I was crying.  They wouldn't give me any.  I was very upset.  Luckily one of my roommates mother was there and she came over and asked me what was going on.  I told her through my tears and she called Glenn at work for me.  The whole thing really upset me to the point where the nurses finally came and gave me an Adavan...a calming drug.  It did calm me down and the roommates mother stayed with me and put cold clothes on my head until Glenn could come.  What a horrible thing to go through!

The morning of the 28th, Saturday, the doctor who did the colonoscopy comes in.  Glenn is there and is waiting to ask her about what the heck happened yesterday.  We ask her and she tells us that she heard what had happened and she was shocked as she said I was asleep for the whole procedure.  I told her that I was most definitely NOT asleep and even the nurse knew that.  She denied it and told me that they didn't see anything but we will have to wait until the biopsy results come back.  She doesn't think that there is anything more for me that they can do so she will discharge me.  I am thankful as I want to get out of that horrible place.  I forgot to mention that on the Friday afternoon, one of the roommates was discharged and they wouldn't let me move into the empty bed.  I couldn't wait to get out of my little corner.  But at the same time, the doctor discharged me without me eating anything for over 3 days and I still was on pain med's up until the hour that she let me go.  This place was a joke.  But I couldn't wait to get home to the comfort of my bed and to get some real rest.

I still continued to have pain and cramping but I just continued with the Buscopan and pain meds to get me through.  I will see Dr. Zeeman again for the biopsy results.  Until then, I just have to try and cope and get through and hopefully this will just all go away.

Friday, August 19, 2011

Follow up

May 4, 2011 we go back to see Dr. Marilyn Zeeman for the results of the colonoscopy.  Turns out that I don't have Chron's or Colitis.  Phew!  This is big news.  I can immediately stop the colitis medication that I have been taking for the past week.  The thing is, it was most likely a very bad infection that I had...and we have no idea how I got it.  There is no explanation for it, I have it.  There really isn't anything more that they can do for me.  I still have lots of cramping, especially after I eat.  I am told to take the medication Buscopan to help with the cramping.  It does help but why am I getting the cramps?  Will this go away when the infection goes away?

I am to monitor my symptoms for a month.  If I get better, great!  If I don't get better, or I get worse then I am to come back to the doctor.

The next 2 weeks are off an on.  Somedays I am okay, other days are crampy but manageable.  I finish my assignment with my first temp job on May 6.  I am sad to leave it as it was a good place to work.  I am to start my next assignment on May 12 at a family violence center.  I seem to be doing pretty good.  I even do a run for the food bank on May 14th.  I am visiting people and doing things and working once again.

May 20th, I start to have some serious cramping at work.  It is Friday, before a long weekend and I don't want to be suffering through the weekend.  I can get in to see my doctor right after lunch.  I see him and again, he is concerned and just wants to know what the heck is going on with me.  He gives me some pain meds and some strict instructions that if I get worse on the weekend, I am to go to the ER immediately.  I promise him I will be a good girl.  I go back to work and finish off the day.  The drugs help with the pain and I continue to take the Buscopan.  By that night I went to bed feeling okay.

Saturday May 21st I feel great!  It is a beautiful day and we enjoy it.  We are going to a friends house for a pig roast, how fun!!  It was a wonderful gathering and we had a lot of fun.  But by the end of the night, I start feeling sluggish and tell Glenn that we should probably head home.  I was very good to watch what I ate and didn't overdue it at all.  It was just probably a lot going on and the warm day just probably wore me out.

Oh how I love to stay positive...

Wednesday, August 17, 2011


Easter is upon us.  We are looking forward to a long weekend of reflecting on what our saviour did for us, as well as spending time with family and friends.  We head up to the farm on the Saturday night to be with my brother and his family.  There is also another family of friends that will be staying out there as well...I think there are 7 kids in total!  We hide Easter eggs for the big hunt on Sunday morning.  We had a fun time with my brother, staying up late, telling stories and laughing until we were crying!

Sunday morning was an early one with 7 kids looking for Easter eggs.  It was so cute to hear the excitement in their voices as they found eggs around the house.  We then managed to get everyone fed and dressed and out the door for church.  After church, we had more family joining us and we were having a big potluck lunch for our Easter dinner.

I made sure that what people brought was either wheat free, or if it wasn't, I would just not eat it.  Everyone was so helpful and willing to give me the information.  We had a wonderful spread of food and it was an enjoyable time.

And then my world changed.  About a half hour after eating, I started to feel bloated.  Okay, I didn't think I had overeaten but maybe I had a little too much of something.  We were getting ready to leave as we had to get my stepson back home to his mom's family dinner.  We agreed to a quick stop at my aunt and uncle's as they have been building a new home and we wanted to get a quick look at it before heading back into the city.

I managed to make it up the stairs to the top floor of the house for the tour, and then I disappeared into the bathroom.  The intense cramping started.  And then the diarrhea.  And then the sweating.  Glenn realized I was no longer a part of the house tour and came looking for me.  I am stuck in the bathroom, suffering.  I can't believe this is happening. 

I was in the bathroom for over 2 hours before I could leave.  It was awful.  Yet in someway I was thankful that we had made the stop at the house or this could have happened on the side of the road somewhere.  I am very weak but feel that I can make the trip home.  We get back to the city without any incidents.  Not long after we get home, I am back in the bathroom again.  I have nothing left in me to empty.  And now I am scared.  For the first time, there is blood in the toilet.  I know that it is not a good sign when you have blood coming from your bowels.  I call my friend who has some knowledge of this and I know that I have to get to a doctor.  I pray that my doctor is working the Easter Monday so I can see him.

The Monday morning I call in sick to work (I am only 3 weeks into working and this is happening...NOOOOO!) and then call my doctor.  He is working!  We go in and see him.  I am still having cramping and bleeding.  He is very concerned and tells me to go to the emergency room immediately.  And off we went.

When you bleed from you bowels, you don't wait 6 hours in the waiting room.  But we still had to wait almost 2 hours before being seen by a doctor.  They immediately put an IV in me and start doing blood work.  After sometime, they start prepping me for yet another colonoscopy.  Man, I am beginning to hate these things!  So all through the night, I am drinking the crap once again and emptying whatever could possibly still be in me for a Tuesday morning colonoscopy.  At around 3 AM, I send Glenn home so he can get some sleep.  Sleeping in a chair is not good and I am not going anywhere until the colonoscopy so he might as well be in a bed at home.  He reluctantly leaves me alone but I will be okay.  I am surrounded by nurses and doctors if anything happens.

Let me tell you one thing...remember all my stories of prepping for colonoscopies at home?  How you need a bathroom NOW?!?  Well, it is really fun doing it in the emergency when you have to share a bathroom with people.  You pray to God that nobody is in there when you need it.  The nurses are good though.  I started running for one and they could see that it was occupied so they quickly told me to head for the other one...I made it just in time.  What an adventure!

Tuesday morning, I have to call from the emergency room to my work to let them know that I won't be in again.  Shortly thereafter, I go for my colonoscopy.  Doctor Marilyn Zeeman is the Gastro specialist on call and she will be doing the procedure.  They put me out and do the procedure.  And this time they found something.

My colon is very inflammed and red.  They aren't sure what is going on until they get the biopsies back.  But it is 1 of 3 things.  1.  Colitis  2.  Chron's  3.  An infection

They start treating me for colitis as it looks to be that this is the one thing that it may be.  Doctor is hoping not, she is hoping that it is number 3, and infection.  But the thing with an infection is where did I get it?  I haven't travelled anywhere, drank any bad water etc.  It is a mystery.  I will see Dr. Zeeman

We go home and I rest for the remainder of the day.  I hope that I can go back to work tomorrow. 

Even though I am weak, and still very crampy, I head back to work on the Wednesday for the rest of the week.  Let's see what the results bring about in May.  It is a long week as I wait for that next appointment.

Tuesday, August 16, 2011

Working girl!

April 4th...the day I start back to work.  It has been 2.5 years since working.  I am excited and nervous all at the same time.  I mean, I feel good, but what will happen when I start working 8 hours a day?  Can my body adjust?  There is no easing back into is full time right off the bat!

I am doing temp work and have a position for 4 weeks at a home health place.  It is 6 blocks from my house so I am able to walk to work and only have to encounter one street light.  Life is too good!  It is a small company...only about 15 in the office so it is a nice transition back into the work force.  The people are very friendly and helpful.  There is even a co-worker who is celiac so she gives me helpful tips as well and we swap information back and forth.  I enjoy the work pretty much immediately.  It feels good to be back and contributing something again. 

The first day goes by...and I feel fine!  I am not tired.  I know that I can do this.  My body is going to cooperate with me.  Even by the end of the first week, I am still doing very well and have no problems with energy and putting in full days.  I am so happy! this the beginning of a new life?!?!?!

Friday, August 5, 2011

Interesting Things

Now that I have been wheat free for 7 months, not only do I feel so much better, but I am noticing some other things as well.  One of the strangest things that I have had for sometime has to do with my thumb nails.  When they grow, they have deep grooves that grow horizontally on them.  They are very painful when they grow out and for years I have asked doctors if they know what causes this and what I can do to fix it because it is so painful.  Nobody ever had an answer for me.  Until now...

Ever since going off the wheat, my thumb nails grow out 95% smoother now.  The horizontal bumps are so minimal now and it no longer hurts me.  It is one of the craziest things.  Was it wheat that was causing my thumb nails to grow all weird like that?  I have to kind of believe that it did as they are almost completely normal now.  Who knew that it could have that effect on my body as well.  But for now, I am happy to have them looking normal and to not have to deal with the pain of them growing out.

I found this article the other day and I wanted to include it here as it describes so many things that I went through.  Again, I am not celiac, but there are many similarities with celiac and wheat allergies that cause many of the same symptoms.  I can eat gluten, though many times I do not as it is just easier to look for gluten free foods than wheat free foods.  Here is the article.  Maybe it will help someone else out as well.  I know when I was having my neurological symptoms and there were no easy answers it was so frustrating.  Why was I having them?  Well, we know why now, but how many other people are suffering and don't know why?

Although the small bowel is one of the main targets of the disease, increasing evidence indicates that celiac disease can affect other organs, including the nervous system, thus changing the clinical scenario from what was once thought of as an intestinal disorder to a broader systemic disease...The most frequent manifestations of such an association are cerebellar ataxia and peripheral neuropathy. Gluten can also be involved in the pathogenesis of epilepsy, as there is robust evidence that drug-resistant seizures (mostly of the complex partial type) and epilepsy with cerebral calcifications are pathogenetically linked to a gluten-dependent mechanism, as indicated by data from our group and others. Other neurological syndromes, including multifocal leukoencephalopathy, dementia, myoclonus, myopathy, myelopathy, stiff -man syndrome, and multiple sclerosis, have been occasionally reported in association with coeliac disease and gluten sensitivity. To better establish the role of gluten sensitivity in neurological impairment, three areas serology, genetics, and clinical response to gluten withdrawal-should be considered...In patients diagnosed with cerebellar ataxia or peripheral neuropathy of recent onset, a strict gluten-free diet is often followed by a notable improvement of neurological symptoms, thus confirming the link between gluten and neurological abnormalities.
Volta U., De Giorgio R., Vol 9 March 2010

Tuesday, August 2, 2011

March 2011

I am getting nowhere with this back to work stuff.  No one returns my calls from long term disability, no one returns my calls from work...nothing.  I have no clue as to what is going on or what I am supposed to do.  It is beyond frustrating.  When you can't go back to work, they hound you to get back to work.  The minute you tell them you can go back to work, no one seems to want to talk to me or help me out.  I am lost.

I try not to stress out about it because there is nothing that I can do about it.  I have done everything that I can.  Yet, the days are going by, my disability will run out on March 31st and I don't know if I have a job to go back to or if I should be looking for a job.  What would you do?

I finally put in one last call to my work on March 17.  They hum and haw and say that they need to meet with me.  Really?  Wow...why did it take so long to come up with this conclusion??  The date is set for March 22nd.  They tell me I should bring my union rep with me to the meeting.  And there we have it.  With those simple words, I know exactly what is going to happen.  I call my union rep and she can come to the meeting with me.  We discuss what we know (which is really nothing) but I tell her I see the writing on the wall.  They are going to get rid of me.  I just know it. 

And you know what?  I am perfectly fine with that.  In fact, it is one of the biggest blessings to me.  I have known for sometime that going back to my job was not the right thing to have happen in my life.  I had to mourn the loss of my job and I did that a few months back.  I loved the work that I did...I truly did.  But the work environment I needed to change.  So I anticipate the news that I will receive on the 22nd.

The morning of the 22nd arrives and I meet with my union rep at my work.  It is weird to even be at work again.  It has been over 2 years.  But I am calm and I am ready.  We go up and meet with the Human Resources reps.  Within mere minutes, I had my separation letter.  They explain why (restructuring is a great word isn't it!).  I am filled with such calm and such joy.  Really, truly I am.  At least I finally know where I stand.  I can move on with my life.  We sign the necessary paper work, I get my copies and the union rep makes sure that everything is legit.  My union rep asks to have a few minutes alone with me.  She asks me if I am truly okay.  I tell her that I am beyond okay.  I am going to be just fine.  I am just relieved to have this all over and done with.  My new life is going to begin.  They lost a good worker today.  I will be just fine.  My union rep gives me a hug.  She is not used to this reaction...she is usually dealing with people who are devastated by the news.  But this is a God thing and that I know for sure.

I walk out of that building for the last time with my head held high.  I know who I am, what I have done, where I have come from and am completely thrilled with the thought of what is yet to come for me.

Being the type of person that I am, and knowing that I was going to receive this news, I already had a resume ready and I walked into a temp agency to register with them.  I know that I have my upcoming surgery so I know that looking for temp work will be the best course of action for me.  I do my skill testing, have my interview and fill out the payroll paperwork.  I finally head home for the day.

The next day I am offered a job.  Things are working out well.  Lisa Harper is going to be okay.  I am back to living my life once again.  April 4, I am ready to enter back into the work force!