Life's Path

Saturday, May 14, 2011

August 2010

Not much to report on this month with my health.  Things are pretty much the same and I am awaiting the results of the tests that I had done last month, which I won't know until September. 

I did have my Broncoscopy on August 13th.  This is the test where the doctor goes down my throat and into my lungs to have a look around.  The procedure goes very smoothly and I would never even know that he had been down there looking around.  It does seem kind of weird that they were in my lungs taking a look.  I can't think about things like that for too long or I just might start to freak out! 

I just take this month one day at a time and see how I do.  I am looking forward to September, yet I still don't want to get my hopes up.  I have had them up many times before, only to be crushed.  So I just try to wait patiently...and I wait...

Wednesday, May 11, 2011

July 2010

Well, Dr. Ramesh was true to his word of sending me for more testing.  The first one is a TB test...I am a little frustrated by this one as I know for sure that I don't have TB but I guess they have to rule absolutely everything out.  So away I go to get a needle stuck under my arm (July 12th) to see if I have TB.  I will have to return in two days to see if the skin reacts to the needle and see if I have TB.  A waste of two mornings but I do it...and it is confirmed that I do NOT have TB.  Got that one over with.

July 13th I go for yet another CT Scan of my lungs to see if the spots are still there or if there has been any change.  July 20th I go for a lung test to see if my lung capacity and all of that is good.

Not much else going on.  Just 4 days of running around to appointments.  I am slowly feeling a little better...we think that it must be the diet change.  I still don't have the energy to workout or do that but everyday energy is improving.  Nap times are diminishing slowly...even a half hour less is a victory!  I will keep doing what I am doing until all this round of testing is done and we get the results back.  Who knows what the results will be at this point.  We keep waiting.... 

Tuesday, May 10, 2011

June 2010

Around this time, Glenn and I started to change our diets a lot more.  We are trying to eat as much organic food as we can.  I gotta try something as I am getting no help from the medical system at this point.  We notice a change.  Not big changes yet but we are seeing a difference from changing the diet to mostly organic.  The idea first came to us from watching the documentary "Food Inc."

If you have not seen it, it is a must see.  It will change your mind about food and what you eat.  So after watching the documentary and doing much research, this is how we came to our conclusion to change our diet.  If anything, it was good to be putting REAL food into our bodies.  Not only does REAL food taste good, your body recognizes it and knows what to do with it.  We are so happy with the changes that we made.

The first weekend in June, we attend a golf tournament in Lac La Biche for the women's shelter there.  We have been attending for years and we look forward to this weekend away as it is a fun tournament for Glenn to play in and it is a wonderful weekend of relaxing for me.  They put us up in a wonderful 2 storey hotel room with full kitchen and a two person jacuzzi tub.  While Glenn is at the tournament, I rest, read, soak in the tub and just enjoy being away from all communication with the world!  This year is no exception, we are looking forward to this weekend away.  Saturday morning and afternoon I am doing my relaxing thing...all is going great!  Then my stomach gives out on me again.  I spend a couple of hours in agony and am disappointed that my wonderful day has been ruined.  I get enough energy to go to the tournaments supper with Glenn.  I can't wait for the events to be over as I just need to lay down and sleep.  It was still a great weekend, just could have been nice to not have it interrupted once again.

June 14 I go back to Dr. Sholter.  We review my last blood work and again, although many things are wrong and don't line up, he can't put his finger on it and doesn't know what to do with me.  He thanks me for seeing him but he will be sending me back to my doctor.  He's done with me.  Again, hope seems to vanish.  I try to remain upbeat but it is getting hard at this stage of the game.  Nobody knows what is wrong and nobody knows what to do with me.

I know what to do...I am going to see my good friend Lisa in Quebec finally!  It is a good time to get away and to finally see where my dear friends have moved to and to get some much needed impact in my life.  Quebec is going to be a good thing.  I leave on June 18th and come back on June 27.  Words cannot describe what happened to me in Quebec.  No my body did not miraculously get better.  But my soul did. 
With Tim and Lisa at Gatineau Park, Quebec

Tim and Lisa poured their heart and souls into me.  Their friends did the same to me.  I met a group of people that showed genuine care and concern for me, without ever having met me.  They couldn't wait to come over and visit with me.  It was an incredible time of these people pouring into my life...something that was needed and a long time coming.  Because of whatever this illness is that I am dealing with, I have lost a lot of friends and such due to it.  People didn't believe in me anymore.  Yet these people 1000's of miles away did.  And they did it without even knowing me.  My soul was revived again.  It was also a good time to go back into Ottawa and see many of the places that we had lived and frequented when we lived there.  I left Ottawa hating it.  It was good to go back and make peace with it.  I also got to see one of our good friends from our football days and have a good visit with him and his family.  It was just an incredible trip all around. I didn't want to come home.  Home meant such uncertainty.  Don't get me wrong, I couldn't wait to see Glenn!  But home was not where I wanted to be.  But home I have to go as I have to face what is going on.  I have to keep pushing on to find out what is going on with my body.  This is all going to have an ending at some point!

So home I am and on the 29th I finally get to see the lung specialist, Dr. Ramesh.  He looks over the CT Scan results from December with the spots on the lungs.  He would like to redo the CT Scan as it has been over 6 months and he wants to see if there are any changes.  He too sends me for lots of blood work.  He is going to line up some other tests for me as well and will let me know.  So here I am, home and back on the big wheel of running around from test to test and awaiting results.  Maybe this doctor will unlock the mystery???   

Monday, May 9, 2011

May 2010

May 3, 2010 I am off to see a NEW Rheumatologist, Dr. Sholter.  This morning I wake up and I am doing really bad.  I have a migraine, my energy levels are so low that I am barely moving around and I just feel so out of it.  I have no clue how I am going to make it to this appointment.  I call my friend Lisa in tears as I don't want to miss this appointment but trying to get to it just might completely do me in.  She suggests seeing if I can move my appointment.  I try the doctor's office and the receptionist is down right rude and nasty.  If I don't make it, she won't reschedule me until August.  I can't go that long before seeing him.  I call Lisa back, I have to go to the appointment.  I don't think that I can walk the block to the bus stop to catch the bus.  I am literally that bad today.  She tells me to call a cab to take me to the appointment.  I barely get dressed, throw on a hat and call a cab.  I get to the appointment and just lay on the table in the room waiting for the doctor to come see me.

I guess in some ways, it was good to be at a very low spot that day when the doctor saw me.  He literally saw me at my worst so he could understand a little more of what was going on with me.  We have a lengthy talk, he examines me.  Again, he is at a loss as to what is going on.  He orders up more blood work for me.  He wants to make sure that the last tests of the SSA and SSB are still so high or if there was a mistake in the last test.  He will see me in a few weeks for follow-up.  I don't even remember how I got home (I must have taken a cab) and when I got home, I slept the rest of the day.  Not one of my good days for sure.

Surprisingly, the next week, I feel great!  A whole week I went without pain, feeling normal and having some sort of energy.  That is what makes this whole journey frustrating.  I can have days, weeks etc of just absolute feeling like garbage and then I will get a brief relief period where everything feels "normal".  It just doesn't make any sense.  But don't get me wrong, I take those good times and I run with them.  Glenn always tells me in those times to not overdo it but it is hard not to.  Sure enough, it doesn't last and I go right back into the tank again but I am so happy to have had the time to feel like a human being again.

The May long weekend we headed out to BC and Washington State.  Our niece was getting married in BC and our good friends live in Abbottsford, BC and Ferndale Washington.  We had a wonderful weekend of visiting with friends and family.  Glenn and I decided that since we were there and I wouldn't have much time to spend with my friend Kristi, that I should just stay out there for the rest of the week to visit.  When Glenn got home, he was going to be leaving for a golf trip so it didn't make sense to have me come home and then be by myself when I could stay and visit with my friend.  So we surprised her when we saw her as Glenn got in the car to drive home and he got out my bag and I stayed!  It was a great week just to relax and visit.  My energy was in the tank again so I slept a lot (good company I am!) but she understood and we made the best of the time that we had.  I just hope that the next time I see her, I will be a lot more fun to be around and won't always say, "I gotta go take a nap".  I am so glad that people are so understanding and are putting up with me.

So there goes May.  Not a great month and still no closer to finding out what is happening with me.  But I can't give up hope.  I have to keep believing....

Saturday, May 7, 2011

Oh April...

Spring brings about hope, change and a feeling of something new.  And I try to believe this too.  Glenn and I have been very busy the last few weeks doing up our wills as we have had many people pass away from this life in the last little while.  And with things going the way that they are for me...well, it was beyond time to get them done and it is such a relief to have that piece of mind.  I hope we don't have to use them anytime soon, but they are now done.  Phew!

April 4, 2010 we went to the John Mayer concert.  We enjoyed a lovely meal at the Coliseum Steak & Pizza before the show.  Although we didn't know the opening act of the show until we saw him, we were glad that we didn't miss it!  Michael Franti was very enjoyable and got the mood going for the night.  We were really enjoying ourselves when all of a sudden I had one of my stomach "attacks".  Seriously, I am out for a nice evening and am very much enjoying myself, I do NOT want to be stuck in the bathroom at this point.  I tell Glenn I gotta go and if he can please find me a ginger ale at the intermission, that would be lovely.  Thank goodness this happened very close to the intermission so I didn't miss much of the concert.  But then that means that the bathroom is going to be filling up soon.  I really am beyond hating this now.  But there is nothing that I can do so there I am.  I am able to get my body settled down before the end of intermission and Glenn has found me a ginger ale so I am hoping to be able to stay in my seat and really enjoy the show.  The rest of the night was magical.  Thank goodness the bathroom did not keep me from seeing this show.

You know, as if I don't have enough to deal with, I have some toothache trouble and go see my dentist on April 7th.  Turns out I need a root canal and have it done that day.  Why not.  Might as well add a root canal on top of everything else!

April 23rd I go for some more blood work.  They are checking to see if I am pregnant.  But before you get ahead of yourself, it is because I am having my surgery to remove the fibroid on April 26th and they have to make sure I am not pregnant.  This is the one time I happily give blood!  April 26th rolls of the surgery.  Glenn and I settle in for a long day at the Royal Alex Hospital.  I am the last one scheduled and of course they get behind so it was a lot of word searches and crosswords.  The surgery went well and I feel fairly good afterwards.  I didn't get to leave the hospital until late at night as I was already late in the day getting the surgery and then there was just some minor post-op stuff that had to be resolved before they could let me go home.

I get home but have a hard time with the pain management at first.  I didn't sleep at all that first night.  Glenn went to work the next day but we had Kristen, Ryan's girlfriend who is studying to be a nurse, come and stay with me the next day.  It was nice to have her company for the day and to just make sure that things were going okay with me.  I finally get the pain to be manageable and the next few days go by fairly smoothly.  On the 30th, I had a bath in the afternoon and when I got out of the bath, I had a mild fainting spell.  I called Glenn and he rushed home immediately.  Something didn't seem right with me.  I had some clotting so we called the health link and told them what was going on.  They tell me to get to the ER as I have just had the surgery a few days earlier and with the fainting and clotting they want me to get checked out.  We go the the ER they do some tests on me, give me some good examinations and try figure out what is going on.  I am dehydrated, my blood pressure is low for the first time that I can ever remember, so they give me an IV with much needed fluids and for pain med's.  The IV hurt so bad going in.  But I am at least getting my fluids and when they give me a shot for pain, it is the first time in a couple of years that I experience NO PAIN.  It is kind of a scary feeling though.  I wanted more of the drug.  I tell Glenn that I get why people get addicted to pain med's.  I finally had relief for the first time in a long time.  I didn't want the feeling to end.  But they can't just keep pumping me full of this pain medication.  And I don't want them to either.  But it was nice to have a brief period of NO PAIN.  I enjoyed those couple of hours.

I am finally able to go home.  They figured my problem must have been due to the dehydration.  They will get someone to come take my IV out so that I can go home.  This lady comes in some time later to take out my IV.  We didn't recognize her as one of the nurses that we had seen through the night but, maybe there was a shift change or something.  Anyways, she proceeds to take the IV out.  Now I need those wonderful pain med's

Do April's showers really bring May's flowers?  I guess we will see what May brings my way...    

Tuesday, May 3, 2011

March 2010

Here we go again, I'm back to the rounds of doctors/appointments and tests.  But then again, we knew that was going to happen.

First order of business was to head back to the Colpo Clinic (March 4th) to see how the cells in my cervix are doing.  Was the LEEP procedure a success?  Is this going to be the end of these appointments??  I go into the appointment with high expectations.  I leave the appointment with high expectations.  The bad cells are completely gone and nothing new has developed!!!  Success!!!  I no longer have to go back to the Colpo Clinic and can just follow-up with my doctor for my yearly physicals.  FINALLY some good news!!

Hahaha...March 8th.  I have been wondering how this appointment will go for the last 6 weeks.  I am headed back to Dr. know the GI guy that wanted to put me on steroids.  You know that this appointment is going to be interesting!  Dr. Bailey comes in and we go over my blood work to begin with...remember the 17 tubes of blood.  Yeah, that one!  The results are 8 pages long.  I will only highlight on the stuff that is out of whack.

My blood is showing a low HCT level.  Surprisingly my inflammation is down to 31 but still above the normal of 20.  My Complement C4 level is low.  My IGG count is high (29.80 when the highest should be 16.8)  My Rheumatoid factor is still high at 27.  In my electrolytes my Chloride is high and my Total CO2 is low.  My total protein in my blood is high.  The protein in my urine is high.  On the ENA screen my Anti-SSA is way high at 669 (it should be 120 or less) and my Anti-SSB is also really high at 570 (it too should be 120 or less) and the ENA screen is Positive which is not good.  The Aldosterone levels in my body are high at 1121 (when it should be between 28-860)

So what does all that mean?  Well, some of it, not so sure.  The ones that need some focus on is the IGG, Rheumatoid factor, ENA Screen results and Aldosterone levels.  Basically, those ones in a nutshell mean that my immune system is low, my adrenal glands aren't happy, and I have some serious autoimmune disease that they still have to figure out.  Again, I have the blood work to back up that something is wrong, but again, we still don't know what IS wrong.

Then Dr. Bailey asks how I am feeling since I have been on the steroids.  I tell him that Dr. Boyko and I decided that steroids was not the thing for me to do since we don't have a diagnosis.  He looks at me, picks up my chart and tells me, "Then you go back to Dr. Boyko and tell him to have someone else find out what is wrong with you."  and he walks out of the room.  Just like that.  He is done with me.  I wouldn't take a powerful drug just because and now he is through dealing with me.  I expected this reaction and I move on.  Back to the drawing board once again.  I am getting way too used to this and I shouldn't be.  I need a specialist to help me and continue to fight for me.

Dr. Boyko is still in my corner and isn't giving up on me, he has the proof not to give up on me.  He will find me other specialists.  Speaking of that, I still haven't heard when I am to see the lung specialist about the spots on my lungs.  I follow-up with that and apparently the specialist office lost my paperwork so new paperwork had to be submitted.  You really have to be on the ball when it comes to your health.  Good thing I followed up with this.  But it still doesn't help the fact that now I have to wait even longer to see him.  Another know the saying.

Sunday, May 1, 2011

Crying and Missing Out

There are days when I would wake up and wonder what the heck was going on.  It took everything within me to get from the bed to the couch.  I would butter a piece of toast and need a nap.  Some days, functioning was just not a word that I was familiar with.  Again, I would lean on my support network and just phone them and cry.  Cry because I couldn't get off the couch due to lack of energy.  Cry because I still had no answers and was sick of living this life that I was in now.  Cry because my mind would try play tricks and tell me that this was a mental thing.  Not everyday was like this of course but when these days did come, the tears could flow. 

And then I would be mad at myself.  Be stronger than this.  Don't let this get you down.  Why push yourself when you don't have to.  Take it one day at a time and enjoy the good days when you get them.  Life could be worse.  I would pick myself up and the crying would stop but that still doesn't bring you back the energy that you don't have.  It still doesn't take the pain away.  It still doesn't get you off the couch, but at least now I can watch a program on TV and laugh.  I am so thankful that I didn't let myself get deeply depressed by all of this.  I think that I just refused to let that happen.  I couldn't do it to myself or to Glenn.  I do know now that sometimes it is okay to cry.  You have to let it out.  It is okay to have emotions like that.  Just don't let it overtake you.

February 2010 was quiet for appointments and doctors.  In fact I had no appointments this month.  We did celebrate my Grandparents 65th Wedding Anniversary up in Westlock on February 20th.  It was to be an all afternoon affair of open house, program and then a private family dinner afterwards.

We only made it to the private family dinner.  Due to the way I felt that day, I had to miss out on the rest of the festivities.  There was no way I could have held up through it all.  If I could have been a fly on the wall and just watched everything, that would be one thing.  But it would have been a full day of interacting with people and I just don't have the stamina to do it.  In fact, I try to make myself go but Glenn, thankfully, just looks at me and makes the executive decision that the dinner is all we will be able to do.  Thank goodness for his wisdom.  We make it to the dinner and again, I am drugged up beyond belief just to get through the dinner.  But I am so glad that I didn't have to miss out on the entire thing.  But I am still mad that this whatever I have made me miss out on the afternoon.  You can't do it all.  I pray that we get to the end of this nightmare so that I don't have to miss out on anything else in life.