Saturday, May 5, 2012

A New Journey

Wow, it has been a little while since my last post.  So I want to post an update.  I have some good news and then of course a new journey.  The Grand babies have moved back with their Dad and seem to be very happy.  I still get to spend time with them and am loving every moment of it.  Just had my 4 month cancer check up and everything looks good.  My tumor marker is around 12.5.  My Medical Oncologist is leaving and will be moving to Texas.  This, of course, is very difficult for me since he is such a great physician.  It is because of him I have entered into my new journey.  Almost a year ago I started noticing severe cognitive issues and severe joint and muscle pain.  In August he referred me to a rheumatoid specialist, in which I had to wait till December to get in to see.  He found I had degenerative disc disease and arthralgia.  I followed up my with Medical Oncologist in January 2012 and explained I could no longer function as I had in the past, I have gotten progressively worse.  I spend all day looking for things and noticing I was more frustrated and now crying all the time.  He then referred me to a neurologist.  Now he is not the only physician I have told this to, I have also been telling this to my family physician and the rheumatoid physician and any other physician I might have seen during this time.  My symptoms do go along with chemo brain/fog and depression.  Those that know me know I am a very happy person.  But even I began to think I was suffering from depression.  I was so tired I did not want to get out of bed all I want to do is sleep.  So I do understand where one might be easy to classify my symptoms.  I finally was able to get in to see the neurologist in March.  He was very concerned with my symptoms and said that they were not normal at all.  Everyone would tell me (except my closest friend who truly knows me) that oh I forget all the time, it is normal, its our age.  Excuse me I am only 46 and NO it is not NORMAL what I am going thru.  Well, the Neurologist ordered an MRI of the brain, EEG and an EMG.  I went this past Wednesday for the EMG and to review my results/findings.  I have multiple lesions on my brain which explains all the issues I have been having, even on days my vision is so bad it is so hard to see not to mention think or remember.  So, now we have to do further testing.  It appears to be multiple sclerosis (MS), but to make sure he is not overlooking anything he is ordering a PET scan of the Brain, numerous lab test to check for infectious disease like lupus, West Nile disease, cardiac disease, I will also have to wear a holter monitor.   It will be another 3 - 4 weeks before we know anymore.  I am greatly concerned since I am still having flare ups and know now each one I have is causing more damage.  Yesterday, I had the numbing sensation in my head, muscle and joint pain and no energy just wanted to sleep.  During these spells I can't think or remember anything it is almost like being a veggie.  Today I wake up in severe pain to the point of being nauseated, head pain along with numbing.  So of course all I want to do is cry, but instead I am typing this out.  Oh, my medical doctor referred my to a psychiatrist due the uncontrolled crying and my depression symptoms.  I have been put on Celixia 30 mgs and it is a great medication I do notice I am not as anxious and things don't bother me as in the past.  I am seeing a therapist once a week and able to vent. This past week we discussed the medical field and how hard it is to find a good medical provider that listens to your symptoms.  It has been almost a year since I have been complaining of my symptoms and still no diagnosis but getting progressively worse.  I am a little bit closer to an answer and it is all due to my Medical Oncologist because he took time to listen to me, know me and to know my symptoms were not me just blowing up they are real. 

You do have to be your on advocate when it comes to your health or the health of your loved one.  My Medical Oncologist tells me you know your body and you know how your symptoms are affecting your body.  Is it something you can deal with or is something that is not getting better or interfering with your everyday life?   Don't be overlooked by your physician, if your symptoms are real to you they have to be real to your physician and if it is not it may be time to seek help elsewhere.

On a lighter note, several people (excluding my closest friends) think I have truly lost it.  Here is why, a couple of weeks ago I signed up for Avon ( I love it wished I had done so sooner.  I already have 2 new team members and lots of customers.  Then my husband said well why didn't you sign up for Tupperware we need some containers, so guess what?  Yep, I signed up for Tupperware and it has been a huge hit because there is NO ONE in our town that sales Tupperware and so many people that has been looking.  ( So visit my sites and take a look and please share with everyone you know.

Oh, I also have been in communication with my daughter and we are suppose to have lunch together Monday.  I can't wait to see her beautiful smiling face.  I so miss our times together and pray that we will be able to spend lots more time together.

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