Still travelling

I know it has been quiet on here for awhile.
It seemed appropriate to take a break from my illness confessional.  My health roller coaster was not only messing with my world, it was affecting those around me and I needed to devote my energy to them.  It was out of respect that I abandon this blog for awhile.
In light of the exhaustion that tests, appointments and the unknown had created in our lives, I did not want others to burnout too.
Alternatively, the reality was that it did not make sense to keep writing, I did not feel 100%, nothing was solved but it just was what it was.  Why add to everyone's frustration or drag people through the unknown? I was doing better than before and I realized that is what my loved ones needed.
The difficultly is that people assume that it is all better?  Some things definitely are, I have only had one day of vertigo in six months!  That is amazing.  I have felt capable of pushing myself to exercise, even if it is only one walk or hike a week, that is better than nothing. 
However, I am still really tired and wake up feeling exhausted.  My joints are still aching (some days more than others) and the feeling of pins and needles in my hands and feet fluctuates between tolerable and painful.  I feel a fine line between being thankful that the vertigo is gone and being discouraged that I continue to feel so much older than I am. Almost like I am not appreciative enough for what I have.
Still, whatever this is affects my memory; I forget everything, I find myself repeating things several times.  Sometimes I do not say anything because I am worried it is the third or fourth time it has been said.  I am still having trouble concentrating which sucks, especially when you are trying to get through school.
I am taking medication that the doctor prescribed for anxiety (he feels that some of my symptoms are the result of anxiety) but the side effects have been out weighing the benefits.  That has lead to my doctor experimenting with the dosage and/or different medications - which comes with its own set of troubles.

I recently was sent to a Rheumatologist.  After some in office tests, we sat for a consultation and he told me that he does not believe that I have rheumatoid arthritis or fibromyalgia. I am getting used to finding out what I don't have.  He gave me a prescription for another anti-depressant (I am beginning to wonder if anyone is listening to me and ironically it is starting to become depressing).  I had to ask if the prescription was for depression (I believe that doctors often assume that you know what they are thinking or why they are doing something) and he said that he thinks my brain is not processing pain properly and the anti-depressant helps to regulate the chemicals that stimulate pain sensors in the brain (finally, a little explanation).  The doctor also believes that it is the result of Chronic Fatigue Syndrome but because it is a diagnosis of exclusion, he had to send me for a whole new battery of tests. 
Today I had 9 viles of blood drawn for 37 different tests.  I have to wonder at what point I will be excluded enough?
It is really tough to move forward and consider myself as someone living with Chronic Fatigue Syndrome when no-one will actually say definitively, that is what I have.  I am told (by doctors, family, friends and colleagues) that in today's society we do not have as much stigma around mental illness and/or unexplainable conditions.  I am having a hard time believing that right now when the doctors themselves seem resistant to put me in either camp. Once again I am paradoxically left wishing for results that will provide answers.

Assessing the next steps

If nothing else, my first blog about this journey has sparked conversation and varying points of view concerning when a doctor should discuss disease.
I really do appreciate the support and it is a benefit to writing about this experience.  However, my motivation for writing this blog is to provide me with a therapeutic outlet.  Whatever I can get out of my head and onto this virtual page seems to alleviate the stress that it may have caused if I were silent.

I had a follow-up visit with my doctor yesterday to discuss the full picture and what the next steps in finding possible answers would be.  I should give some further clarification, my appointment ten days ago was with a retired doctor who was filling in for my doctor.  It is funny because I have heard several theories on how this doctor should have handled the discussion with me.  While I appreciated his candor and straight forward nature, many people in my life wished he had not been so definitive.  There is so much variance in both the types of doctors there are and the types of patients.   
So yesterday the appointment was with my doctor who had returned from a conference.  He was left with the notes from the other doctor and now it was up to him to decide what steps would be next.
My own doctor is much more speculative and less committal when answering my questions.  An example:
Me: Were the symptoms I experienced last year (joint pain, fatigue, tingling sensation in my hands and feet) neurological and could they be symptoms of MS?
Doctor: Possibly.
**side note** My doctor is great, I really like him.  BUT for the majority of my questions this was how he answered.
Granted, I was only asking these questions because I was told by another doctor that he thought I did have MS. Regardless, ten days ago I presented with optic neuritis, that is conclusive.  Whether it was a direct doctor or a reserved one, there is still a good chance that we would have been discussing MS.  At no time did my doctor say that he did not think that I had MS.

Conversely, an MS protocol MRI is the next step whether I had a doctor saying "20 years ago we would be diagnosing you with MS, but now with MRIs we can find out definitively" or a doctor that just said "the next step here is an MS protocol MRI and there is a 50/50 chance you have MS," I am still in the same place.  I am living with the possibility of having MS until I have a definitive diagnosis and it is our human nature to wonder and worry.
My doctor yesterday said that if he could give me one piece of advice he would advise me not to do the "what if" thing.  Fair enough, and to be honest, we really haven't.  The only thing that changed (it is still a pretty big thing) in the past 11 days is that I have felt like maybe we will get closer to finding some answers concerning my health.
So you may be asking yourself, "if it is only a 50/50 chance, what else could it be?"  Good Question!  I asked that too.  We have ruled out Lupus, Rheumatoid Arthritis and Lyme's Disease through blood tests.  It could be psychiatric and according to my doctor that is the second most common diagnosis with the symptoms I am presenting.  More specifically it could be anxiety.  He was quick to point out that it does not make my symptoms any less real, it just means that there is no neurological damage attributed to the symptoms. Is it wrong to be hoping for anxiety?
So the MS protocol MRI (which spins the molecules a different way and looks for different algorithms) should give us a definitive "yes, I have MS" or "no, I do not have MS."  There is a small possibility of maybe (of course there is!).
The reality is we won't know anything more until the next MRI but my doctor was hopeful that the MRI and the results would be at most a two month process.  Here is hoping.

The Invisibility of Health

Funny, when I was not well health was constantly on my mind.  I wanted it and I couldn't seem to attain it. I spent a good deal of any given day feeling anxious about what my lack of health meant for my future.  However, entangled with my internal dilemma was the desire to maintain an outward appearance of health.  I believed that I was capable of looking like any other student, mother, woman and I did not believe that people were aware of the enormity of my struggles.
Health is one of those things that people make assumptions about until they determine otherwise.  Interestingly, what I learned is those assumptions have ramafications for the person who is struggling with the invisibility of their health. I decided to convery a couple of interesting examples for my readers.
My school is a four level builidng with classes taking place on the second or third floor.  After entering on the first floor you must take several flights of stairs to get to the floor you need. One day I was particularly exhausted and my joints were throbbing.  Instead of struggle up the stairs I decided to take the elevator and save myself further fatigue.  I pushed the up button when a fellow student confronted me and said "that is for people that need it you know."  I was embarassed.  I had a split second to decide whether to confide my very personal health condition to my colleague or continue my cherade (I know some of you believe that I had a third option to tell that student to mind their own business ~ that took too much energy).  I chose to pull myself up two flights of stairs rather than expose my vulnerability.
Of course it wasn't only colleagues that I was saving face with.  The general public was unaware that an ill person was lurking among them.  For instance, I was in a store when a man approached me and asked where I had purchased my bag.  In earlier blogs I have discussed the impact my illness has had on my memory, this was a situation where I was at a complete loss to recall information.  I told him that the bag had been purchased a couple of months ago and I could not remember where I had gotten it.  The man preceded to ask "who can't remember a couple of months ago?" Again, I struggled with confronting his arrogance by explaining the extent of my health problem but that would mean confessing a reality that I wasn't willing to face myself.  I think that I just acknowledged his comment with an apologetic look and continued on.
I have been on my medication for eight weeks now and am feeling one hundred percent better.  I wanted to conclude this blog with an insight into how my compromised health had made me more aware of the impacts of health on others.  The recognition that anyone in my life could be struggling or suffering with challenges to their health.  The reality is that as I sit here typing with a clear head, pain free and ablebodied I realize that health has become invisible again.

When did that Happen?

I am sitting here, realizing that it has been 4 days since I had vertigo.
In fact, my head feels clear and securely attached to my neck.  I am amazed at how taken for granted this feeling can become, especially when it has been months since I was free of lightheadness, vertigo and buzzing.
I am cautious in saying this, constantly aware that the superstitious part of my identity is afraid to tempt fate.
I want to say that I may even feel relatively "well."  There are some minor aches and pains, but right now I am not overcome with the energy draining, full body fatigue that has been a staple in my existance.  I think that this means the medication is working. I have been on it for three weeks now and other than the very dry mouth (a common side effect) it has been a fairly painless experience.  I am not on the full dose yet, as my doctor would like to see me ease onto it (I guess because it affects your brain chemistry) and so I have to up the dose a little at a time. Today makes me optimistic that we may be on the right track and possibly my life as a human pin cushion will be coming to an end soon!
I will keep you posted.

Asking for Yelp!

 

 

 

 

 

source

 

I have been writing blogs for a couple of years now.  When I have been asked why I blog, my response has always been "it is a form of therapy and a way to normalize my experience."  What I have not verbalized is that the blog has been a way to discuss how I feel or convey messages to people I love and care about.
In blogging about this recent journey on a road to finding a diagnosis, I truly believed I was open and honest.  At times I was revealing some intimate details about my physical condition.  Sometimes I was pondering a thought to an elusive virtual community. 
But in reality I was keeping my world at arms length.
Remaining anonymous to my own life.
There is an ease to conveying your feelings from an empty dining room table.
When you do not have to vocalize your emotions to another face that may react to what you have to say, you can say anything.
My ability to be "open" about my health was conditional on doing it from behind a computer screen.  In reality "open", only meant sharing the tip of the iceberg, the remaining 90% of what I have been dealing with has been buried far beneath the surface, untouchable.
When I met with the doctor last week, I was forced out of the comfort of my virtual world.  I could not hide behind a hectic school schedule.  My children were not going to provide me with a distraction.  I had to face the reality that there was something very real to talk about.  Last Tuesday is where the unravelling began.
This past week has been a roller coaster of emotion. I have had to laugh.  I've also had to cry and cry and cry.
I have had to talk about how I have been feeling, because it has become impossible to ignore that I have been feeling. 
Admittedly, stoicism is an inherited trait.  Even in my openness I am recognizing how out of touch I really am.
Today I made a small change and I did something out of character.  I did something that required me to be vulnerable (a position that I usually run from).  I did something that demanded strength and trust. I asked for yelp help.
I have always advocated that people recognize their limits and honour their emotions.  I have challenged family, friends and clients to see a request for help as a sign of strength.  The recognition that you know your limits and that you are acknowledging and fulfilling your needs.  For the past year I have been gauging strength on my ability to push through, buck up and carry on.  There is a need for that mentality but there is also a cost.  I am not sure that I can continue my journey being dishonest with myself, family and friends.  I am feeling something, many things and it hurts.
Right now I need to be resilient and that means building my supports to get me through.  It means I may need to get comfortable with asking for help.  One day at a time.
"The life of man is like a game with dice; if you don’t get the throw you want, you must show your skill in making the best of the throw you get." Terence

How to Go Forward

There won't be any fancy pictures or play on words today.  It has been an energy draining day, and when you don't have much energy to begin with, you must forgive me if I cannot bring myself to use more than I need.
I would like to give the facts but honestly I am not sure how much more I know.  When we walked into the doctor's office he said "well I have the results of the MRI and I am not sure that we are any further ahead than we were before." Let me explain what he meant by that. There were two sites on the scan where there was non-specific change in the white matter of the brain (same as before) but they had not changed and there were no new sites.  The doctor felt that if it was MS there would have been some change.  I asked how much change was possible in only three months (the timing of the last MRI) and he did not know but felt there should have been some.  I will have another MRI in a year to see if anything has changed.
We discussed Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) admittedly I was the one to bring it to the table but the doctor thought it could be a possibility.  It is a diagnosis through elimination, so once every option is exhausted CFIDS may be the diagnosis.
There were tears today.  When I inquired about MS further, Landy did respond by asking if I wanted it to be MS (I understand his response comes from a place of love and concern) and all I could say was that I did not want this to be dismissed just because it was not MS. I want to be seen as legitimate and valid because I do not feel "well" and I am trying to function as "well."  There is no way of externalizing what I am experiencing but at times I wish I could.  When people cannot see the illness it can be very easy to be dimissive of the impact it is having at any given moment.  I want answers because not knowing really sucks.
But enough of my soap box.  I most likely do not have MS and I will be able to be more definitive in a year.  We are doing more testing for viral causes and the doctor is treating me for CFIDS with a low dosage of tetracyclic medication that has been proven to help in CFIDS cases.
That is how much I know for now.  I wish it was more but we know more today than yesterday.  Thanks for the love and support.  It does help, truly.

Infuriated in Purgatory

Since my MRI last Monday, I have felt lost in a state of purgatory.  Not in the religious sense of the word but rather the sense of suffering temporarily.  The past year has been teeming with doctor's appointments, specialist insights and testing that was neither comfortable or comforting.  And now here I sit on the cusp of breaching the unknown, terrified for the answers that only two months ago seemed imperative to my journey.
I am stuck in the understanding that regardless of the diagnosis there will be impact, I will be affected.  I try to imagine my reaction regardless of the diagnostic results, but I am aware of my inability to truly appreciate the profoundness of the moment until I am in it.
I must pause here.
Have I ever relayed the story told to me by a young widower? I think I should:

While the young man sat vigil over his wife as she lay dying, he tried to imagine what life would be like without her.  He believed that her illness had given him some insight into losing her.  In the moment of her death he recognized how incomprehensible death was and only by living the experience of being without her would he ever truly understand it.  His message to me: we cannot imagine what we have not lived.

So I am in purgatory, left to wait until Tuesday, when who I am today will be decentred and reimagined due to a chronic illness or a psychiatric one.

You may be wondering, why infuriated?  Perhaps that is too strong of a word, 15 minutes has passed since I began this blog (I am trying to be mindful).  Now I feel more heartbroken in purgatory.  I would not normally expose a conversation that I have had, but I feel like it illustrates how easily we become invisible and even with good intention we can hurt.
I had someone close to me ask how I was doing and if I had received my results yet.  I told them that I was okay but feeling sick in the waiting.  In response they told me that they knew everything was going to be fine.  Feeling exposed and vulnerable, I asked what fine meant to them.  They told me that they knew that I would not have MS and that all of this would go away soon so I could just be.  I recognize that the intention was to put me at ease but unfortunately I left this message feeling invalid.  The advice minimized the past year of experience with my health or lack of it.  In an accusatory fashion it pointed at me to take responsibility for my "unwellness".  It felt like the crest of a slippery slope almost saying that I was creating my illness and it was all in my head (ironic I know).  That is the hurt.  The medical profession can be cold and disconnected, people can be presumptuous and pass judgment and in response the person shrinks into vulnerability and becomes invisible.
I am vulnerable right now and sensitive.  I understand that people in my life are hoping and praying for the best possible outcome.  If I could take the opportunity to teach people what I need I would tell them that nonjudgmental, quiet companionship helps.  Walk with me, not for me.  Do not take the lead.  If you care, just be with me and the rest is within me to handle.