Thursday, December 3, 2009

Who I am.

Well I can hardly believe that it is already the beginning of December. It's been two whole months since I last posted and it feels like a lifetime has occurred during that time. When I saw my neurologist in September he warned me that the extreme fatigue which accompanies MS can be the most debilitating aspect of the disease. I have always been a "tired" person but I thought it was my fault and over the past two months I have been struck almost useless by this fatigue. There have been days where I have woken up, moved from my bed to the couch but would not be able to move from there. At times I would call different friends to get them to tell me to go and shower because I was coming over to their house for dinner. Having this type of encouragement and incentive helped to make these almost impossible chores bareable, because someone was counting on me to accomplish them and at these times I could not count on internal motivation to accomplish these things so I had to rely on the external motivation of my friends.
This is not how I imagined my life going. I did not ever expect to be nearing 30 and feeling like I am not able to fully care for myself or support myself to the extent that I would like. I definitely did not ever think that I would be living with a debilitating, progressive and unpredictable disease. This has been a difficult pill to swallow. When I first experienced problems with my back almost 10 years ago, I got through that and really hoped that would be the end of my physical difficulties, at least until I was at least 80 and some health problems would be expected. Alas, my life has not conformed to any social norms thus far so why start now?
I am happy to say that during this really difficult time I have not missed any work and have retained my full employment. At the times when I drag myself out of bed at 6am to go to work this feels like an immense accomplishment. But, I do not want to leave this post on a dark note. As I said, the past two months have been really difficult, I have been experiencing great grief and sorrow over what having MS means for my life and my future as well as dealing with the physical aspects of the disease. But two weeks ago things started to change for my physically. I have been speaking with different people who have been living with MS or similar diseases and they have all recommended the same things: vitamin D supplements and vitamin B12 shots or supplements. I thought I would try the vitamin D and have been taking twice the recommended dose. I started taking the vitamin D on a Wednesday evening and by Friday I felt like someone had started turning the lights on inside of me again. Now two weeks later, I feel almost normal again. I have seen a remarkable change in my energy levels and my daily functioning. I still have to be very cognizant of how my sleep I get, making sure I don't let myself become over tired, but at the same time I am not struggling to make it through the day because I am so tired, even after having an afternoon nap. Yesterday I drove to Vancouver and had a lovely afternoon with some girlfriends, then I came home and made dinner for another friend and then proceeded to go to the movies. By the end of the movie I was ready for sleep but it seems like a miracle that I had that much energy yesterday to do all of those things in one day and to thoroughly enjoy it. I have even started going to the gym again which has been amazing. I still have to be careful but it has felt like a miracle that with two little pills a day I could see such a change in my daily living and functioning. I have begun to see glimpses of my former self again and that makes me feel happy. This is my journey and I am happy to say that today I am doing well.

Tuesday, September 29, 2009

I am not an Island

There are many statements which can be used to describe my life but this one has stood out the most over the past week: the Lord has blessed me with amazing friends and family and he uses them to show me his love every day. During the week and a half leading up to my appointment I was blessed to have a dear friend stay at my house who I could talk with and be quiet with. The evening after the appointment it was a group of these wonderful friends who took me out and helped me to remember that this diagnosis does not change who I am and who God has made me to be. I am still his child and these beautiful people in my life still love me and would do anything to support me on this journey.

This is life. We walk this path and we experience joy and sorrow but what really matters is who is there beside each of us during the different seasons. This became even more clear at the end of last week when I spoke with my dear friends who told me the news that they had lost their baby five months along in the pregnancy. My heart broke for them and I felt their pain as my own. They have been walking with me through my experiences and now it is my time to walk with them through their loss and sorrow.
The day after hearing the news I was over at their house when my friend looked at me and asked if I would come and spend a couple of days with her and her husband at a resort near by. Her husband would be working through the days down there and she did not want to be alone. As I write this I have just come home from spending two days and one night with them and while my heart is still heavy from the sorrow and pain, healing has begun for both of us because we were able to shed tears together and to share laughter together. Every day I am coming to realize more and more how precious relationships are especially when we find those who we can be our true selves with. Those who we can show our hearts to and they accept what they see. Those rare people who are willing to walk through the raw and ugly moments which life can sometimes bring our way. It is for all of my friends that I can say I live a blessed life.


"Each friend represents a world in us, a world possibly not born until they arrive,
and it is only by this meeting that a new world is born"
~Anais Nin

Monday, September 21, 2009

The Next Stage of the Journey

When I was 20 I went to see the doctor for what seemed to be a minor pain in my leg and what resulted was the discovery of a severe spinal problem which ended in years of pain and ultimately sugery. Through that experience I have become very atuned to the significance attached to different situations and how life-altering they may end up being. This past Friday was one such day, the day when I was scheduled to go and see the MS doctor in Vancouver. Even though I had had months to ponder the possible outcomes of this appointment the possible ramifications of this appointment were not lost on me but glaringly apparent. Sometimes ignorance can be bliss.

On the morning of the appointment as I drove into Vancouver with my mom, I was able to allow my thoughts to be distracted from what was to come by focusing on maneuvering my way through traffic. As we entered the building my stomach started doing little flips and it took a lot of silent prayer to keep myself calm. Unfortunately, sitting in the office waiting room looking through dated magazines and reading of the past adventures of Brad, Angelina and Jennifer Aniston could not distract me from what lay ahead. The seeming eternity finally came to an end when the receptionist said that I could go in and see the Doctor.

As I entered he was sitting behind his desk in front of a couple of windows with an amazing view of False Creek and the Burrard Street Bridge which seemed to bring a bit of peace into my soul. As I gave him my medical history and tried to answer his questions I felt eerily calm and a little detached. After getting all of the history that he was after he took me to the other room and went through what has now become a familiar examination to see whether I still have my balance, reflexes and feeling. Back in his office he started talking to me as if I had already been diagnosed and how to treat my MS and I had to stop him and explicitly ask him if he was formally diagnosing me with MS and the answer was "yes".

And so I have been formally diagnosed with MS. The Doctor has told me that every person responds very individually to the disease so how my body responds to it may be very different from how another perons response. He also told me that because my flare-ups have been relatively minor, have been far apart from each other and have healed themselves that this could be a good sign as to my future experiences with MS. He also said that he would not put me on medication at this time as my flare-ups have been too infrequent and not severe enough. Throughout this meeting I kept asking questions as a way to gain more clarity. I asked him about the fatigue that I constantly feel and he warned me that most people with MS find this the hardest thing to deal with and stop working due to the fatigue that they feel. He encouraged me to keep pushing through it while not allowing myself to become overly tired, I need to find that balance for myself and start implementing it. I also asked him about the problems that I have been having with my memory and word retrieval and whether there was something that I could do to help make it better. He unfortunately told me that it would be something that I would have to live with.

So that was the extent of our visit. He has told me that if I have any further problems that I should come in and see him but otherwise I should come back in a year for another check-up. Not necessarily the exact message I was wanting to hear but at least I know what I am dealing with. Better a known enemy than an unknown enemy.

At this point I am still feeling a little disconnected to the full meaning of the situation and have not really had a chance to process how I feel about it but I wanted to let you all know how the appointment had gone and I will post more later. Thanks so much for all of your prayers and words of encouragement, they have been, and continue to be, appreciated and felt.

Wednesday, September 9, 2009

Oh How Time Flies...




Well, I started this blog with such enthusiasm and then it seems that August took over and now it's been over a month since my last post. I apologize. The past month has been filled with many wonderful adventures, memories and laughter. From camping on Stave lake, a birthday getaway celebration to Whistler and visiting a good friend in Seattle the past month has been full to the brim. In and amongst these adventures work has beckoned me to fulfill my obligations as a full-time employee, yippee!
This has truly been a summer to remember. My goal was to embraced what life brought to me, to truly taste and experience every moment and I feel that I was as successful as I could be in reaching that goal. But I have found that by desiring to feel life more fully has not only increased my ability to experience complete joy in the little things but it has also helped me to articulate and understand the frustration and pain that I am feeling. While I have experienced one of my most memorable summers, the joy has been shadowed by the physical pain that I have experienced as my symptoms have increased and become more intense. Never have I experienced such tension between joy and sorrow as they try to co-exist with my life.
The most frustrating thing about dealing with these symptoms is that I have not known how to deal with them. My neurologist in Abbotsford referred me to the MS clinic in Vancouver already back in July and my appointment with the clinic is not until September so for the past couple of months I have felt like I've been riding out a storm without any paddles or understanding of how to deal with the storm. I am hoping that the neurologist in Vancouver will be able to help me find different techniques and treatments to help with my symptoms. A poem which has been an encouragement to me is Waiting by John Burroughs. Here it is below, enjoy.

WAITING

by: John Burroughs (1837-1921)

      ERENE, I fold my hands and wait,
      Nor care for wind, nor tide, nor sea;
      I rave no more 'gainst time or fate,
      For, lo! my own shall come to me.


      I stay my haste, I make delays,
      For what avails this eager pace?
      I stand amid the eternal ways,
      And what is mine shall know my face.


      Asleep, awake, by night or day,
      The friends I seek are seeking me;
      No wind can drive my bark astray,
      Nor change the tide of destiny.


      What matter if I stand alone?
      I wait with joy the coming years;
      My heart shall reap where it hath sown,
      And garner up its fruit of tears.


      The waters know their own and draw
      The brook that springs in yonder height;
      So flows the good with equal law
      Unto the soul of pure delight.


      The stars come nightly to the sky;
      The tidal wave unto the sea;
      Nor time, nor space, nor deep, nor high,
      Can keep my own away from me.

Sunday, August 2, 2009

I just want to share a quick story before it gets lost in the recesses of my mind. Today I was driving from Osoyoos back towards Vancouver and we come up to Keromeos. At one point you come to a T-interection which will take you either to Penticton or Vancouver. Just before this intersection is the RCMP station. It was pretty hot out today (at least 34 c) and as we drove up to the RCMP station one of the squad cars pulled up to the end of the driveway and waited for me to pass. As we passed I looked into the squad car and there was this nice looking police office (I think he was an officer) without a shirt on. It caught me off guard and I had to take a second look to see if I had seen correctly before bursting into laughter. All I could do is wonder the story behind this guy driving an RCMP cruiser without a shirt on... oh well, I guess I shall never find out, unless he's an escaped convict and the story ends up on the news, this could be interesting...

I will write more about the wonderful weekend I had later, now it is time for some slumber.

Thursday, July 30, 2009

If only I didn't have such a thick skull

On my last post I gave a very brief overview of who I am so I thought that this post I would give you a little bit more background as to why I started this blog. A few months ago I was nearing the end of my degree in social work and as per usual I was over loaded with the amount of things I was cramming into my life. I was doing a full time practicum for my degree, class work for the degree, working part-time and singing in a choir in Vancouver which meant lots of extra driving for rehearsals and concerts. Looking back on it, I was a walking disaster waiting for something large to occur which would force me onto a different track. Well, this significant thing happened one Saturday evening when I was working on my computer and I realized that I was unable to see properly out of my right eye. I didn't think much about it because I thought it might be an infection or a sinus cold but without the oozing and crusties, just a lot of pain. On Sunday I was speaking to a friend of mine who is a nurse and she encouraged me to get my eye checked out. Monday morning I called to see my regular doctor but he did not have any space to see me until Wednesday and that was too long to wait so I ended up going to a walk-in clinic. It was at this point that I started realizing that something was seriously wrong because when I went to do the eye chart I could not see anything out of my right eye, it was all white noise like on a TV when you don't get that channel. Thankfully I was able to get in to see an ophthamologist (an eye specialist) that afternoon. He did a check up and was able to tell me that I was experiencing optic neuritis (aka inflammation of my optic nerve) in the right eye. He told me that this could be indicative of MS, a brain tumour or possibly a random occurance which would heal itself in time. When he mentioned MS I told him of my history and how two years ago I lost feeling in my legs up to below the knees and how they had checked me for MS back then as well but had not come up with anything conclusive. So this is where my latest adventure began.
Since then I have been seeing specialists and have tests conducted all over the place. I had a head MRI done and at the end of June my neurologist called to let me know that I do have 4 or 5 lesions on my brain (anything over 3 lesions is usually diagnosed as MS) but that only one was very typical MS while the others are not. Over the past 5 weeks he has tried to do a lumbar puncture so that he could test the fluid but was unsuccessful due to a lower lumbar spinal fusion that I had about 9 years ago. So up to this point we have not been able to come to a conclusive answer as to whether I have MS or not. The next stage of the journey is meeting up with an MS neurologist at the MS clinic in Vancouver. The doctor's office called my house to set up an appointment over a week ago and it took me a week of deliberating and consulting with my friends who are health professionals as to whether I should pursue seeing this doctor and the consensus was that I should and so on Tuesday I called and am booked to see this guy in September.
This turn of events has been a big kick in the butt. It has forced me to stop and look at the lifestyle that I have been leading and to re-evaluate what I really want my life to look like. While this situation has caused me much pain and many tears, it has also allowed me a chance to make drastic, positive changes to my life. I just wish I didn't have such a thick skull so that it didn't take such dramatic experiences to get my attention.
While there are still days where the tears flow and it is hard to get out of bed, there are more days where I am encouraged to experience life to its fullest because I do not hold my life or my health in my hands and I do not know what tomorrow holds so I am going to try and extract as much joy, love and peace from the one that I do have.
I apologize for such a long post, hopefully the others will not be as long and intense but this gives you a better idea of what is propelling me forward to live my life to its fullest. May all of you experience a fullness of life today as well.

Saturday, July 25, 2009

Going for it!

I have been mulling over the idea of starting a blog for months now and decided that this stormy and wet evening was the perfect night to jump in with both feet and go for it. So here it is, my first entry and nothing profound to say. I think I should introduce myself a little bit, let you get to know me but that's where it gets difficult, the part where I try and describe myself in a few descriptive words. I am a woman in my late twenties and a social worker, I love to laugh and am on a journey of rediscovering loves that have laid dormant for too long, excited about aquiring new ones and learning how to fully engage in this song and dance which is my life. Enjoy!