Isolation and Solitude

Again it has been a while since I have written anything. At the beginning of this month  yet another medication was added to the ones I already take and besides knocking me out for 17 - 18 hours a day it was not doing any good so I have told them I will not take it. And began my search for another GP, putting me in a zombie state is not of help to an already desperate situation. Nor was it a medication that offers any benefit to this condition.  

Most days I did not have the ability to do what everyone semi-healthy or healthy takes for granted in their daily life. Prior to stating this latest medication, I at least was able to be awake and enjoy reading people posts, be it on FB or Twitter. Throwing in my two cents for what it was worth here and there. Reading a good book or watching the occasional show I enjoyed. All of that in the span of starting this new medication made even that impossible within the first two days. I was unable to stay semi-conscious for any length of time. But at least I can control that part at least by going off this medication.

I too have not shared but am now letting you know I suffer from short term memory loss or as those with Fibro call it "brain fog" which has made my house full of sticky notes and calendar reminders all over! Many times I have the thought to call. message or email someone and then forget, it's nothing personal. That is just my reality, and I am trying really hard so don't think I am shutting you out. (I had a friend who thought I was ignoring them which rather than assume please ask I won't take offence. You should remember that I was not like that before, so why now that I am sick that thought process has crept into your mind?)  I know I have changed but not my care and compassion for my friends and family. If you feel it has please let me know so we can work it out.   

I also suffer from very jumbled thoughts. What I write is not as clear as it once was more then likely the medications and is part of this condition, I think.  I have read many people asking those of us in our support groups the same questions over and over so I know I am not alone.  Too bad no money is made in really studying this condition, someone could put two and two together.  

Which brings me to the topic of isolation and solitude. Last month I had my flurry of visitors...friends that I had not seen in a while. It seemed at least for a few weeks we were having non-stop visits which now again have ceased. Which is okay it's a pattern which only those who are chronically ill and especially those that are mostly house-bound know and can understand all too well. I say mostly because I am one of the lucky ones who still has some good days up until three weeks ago was able to get out occasionally on my own. I would not dare at this time until my sleepiness and nodding off without warning has diminished.  

See I/we can no longer participate in activities which in our or at least in my case have to weigh the pros and cons of doing so. My healthy friends and family I am sure you think I am ignoring you which is the farthest thing I am doing. But how do you participate in a world from which you no longer have much in common with? It's finding that fine balance which unfortunately until you are forced into the situation cannot fully understand. I struggle with this balance every day.

I would do anything to wake up tomorrow and call someone and say hey let's go out but I don't have the luxury of being able to do so. I no longer know what is happening in your life. Nor can I predict from one minute to the next how my body is going to react, so staying home is safer for me. But that does not mean I never want to hear from you. Or be invited somewhere. I leave you alone waiting for the phone to ring or for you to show up at our door, because I honestly don't know if you are busy, I have been away from your world too long to know. 

And in turn I have had friends say call me and let me know when is a good time to visit you. In all honesty I can't predict when that will be, but one thing I can say is show up I am use to being in pain and would still love your company. (I have become a master at masking the pain I am in, you would think nothing was wrong, unless my lovely muscles decide to put a show on for you. The one thing I have no control over but once over at least you can witness an incredible feat I do for kicks! Just ask any medical profession I've seen they will gladly tell you I have the power to put myself through the pain of having my muscles twist on their own!  Too bad side shows were no longer popular I would have a job again!)

I had a call with a friend not long ago who was starting to tell me of her troubles with a co-worker and stopped in mid-sentence and said "oh, this is so trivial compared to what you are going through". But what a healthy person fails to realize is we need or seek the mundane to remain part of the world. 

 

Just like I/we don't want to always bore you with my/our health but when you shut down the conversation it actually makes us feel worse or at least that is how I feel. Because it is one more reminder that I/we are not part of that world anymore. For a moment put yourself in that place of someone shutting you out. I'm sure it has happened to you before and the feeling was not a good one. I/we face that on a regular bases. Don't forget that we are still humans and need contact. Talking to you what is trivial and mundane gives us reason to feel like a part of the world that we to use to take for granted. Please don't shut us out; talk to us as you use to I guess is all I am trying to get across. We/I have mastered the art and have learned even though I/we are in pain we still want to know how you are too.

My illness should never make you feel like I care less about you or what is going on in your life. It matters to me because you mean that much to me. 

Remember we are still here and although  you may not be comfortable remember those of us who suffer from chronic illness are still trying to finding our comfort zone too. Embrace us and let us still feel like we are still a part of the mundane world.

We all know the saying laugh and the world laughs with you...Weep and you weep alone...well for those that don't know here is the rest of that poem. Both healthy and the sick should take note and help each other to the best of our ability, until we all have to take that final journey alone.

Solitude

BY ELLA WHEELER WILCOX

Laugh, and the world laughs with you;

Weep, and you weep alone;

For the sad old earth must borrow its mirth,

But has trouble enough of its own.

Sing, and the hills will answer;

Sigh, it is lost on the air;

The echoes bound to a joyful sound,

But shrink from voicing care.


Rejoice, and men will seek you;

Grieve, and they turn and go;

They want full measure of all your pleasure,

But they do not need your woe.

Be glad, and your friends are many;

Be sad, and you lose them all,—

There are none to decline your nectar wine,

But alone you must drink life’s gall.


Feast, and your halls are crowded;

Fast, and the world goes by.

Succeed and give, and it helps you live,

But no man can help you die.

There is room in the halls of pleasure

For a large and lordly train,

But one by one we must all file on

Through the narrow aisles of pain.

Giving Hope With Haematopoietic Stem Cell Transplant

Acknowledgement of the content of this post is given with gratitude to Bill Cole, Sam Baar and Anne (last name withheld) who reside in the USA.

There are many people in the world with devastating autoimmune diseases, including Multiple Sclerosis (MS); Stiff Person Syndrome, the extraordinarily rare (1:1,000,000 people) disease that I have; Scleroderma; Lupus; Type One Diabetes; CIDP, and other blood-borne autoimmune diseases.

The most common autoimmune disease is MS. Many people with MS become disabled and wheelchair bound.

Over the past approximately 15 years HSCT (Haematopoietic Stem Cell Transplant) has been proven to be a very effective treatment for MS (and other blood-borne autoimmune diseases). It stops disease progression in approximately 80-90% of MS cases & it can improve prior damage for many people, especially if they receive the transplant early in the course of their disease. Several thousand people with MS have had stem cell transplants over the past 15 years, and based upon the published results, stem cell transplant appears to be the most effective treatment currently available for MS.

Based upon the success of patients with MS (and a few other autoimmune diseases) that have received a stem cell transplant, three hospitals in the United States (the Fred Hutchinson Cancer Center in Seattle, the Colorado Blood Cancer Institute in Denver, and Northwestern University in Chicago), and The Ottawa General Hospital in Canada, have implemented clinical trials to use stem cell transplants to treat people with Stiff Person Syndrome. Approximately 23 people with Stiff Person Syndrome have received stem cell transplants over approximately four years. So far, the preliminary results look very promising, at least for those that received the treatment over 18 months ago. Generally speaking, the results for most patients with blood-borne autoimmune diseases that have been treated with a stem cell transplant are very good.

One of the problems in receiving this cutting edge treatment, is that many neurologists (the type of doctor that typically treats neurological autoimmune diseases) will not support stem cell transplants as a treatment for MS and other autoimmune diseases. (Fortunately, for those that have gone through the trails they were able to find neurologists who were both very supportive of their decision and encouraged them to pursue a stem cell transplant).

Speaking for my situation when I asked about this treatment was told and I quote "you are not seriously thinking about going to a third world, snake oil charming selling clinic who will cause more damage and upon your return I will be left to try and repair the damage they will cause you." I personally am in Canada so am trying to get to the Ottawa General Hospital last time I checked Canada was not a third world country and the team of specialist in Ottawa from what I have read and been told are not snake oil sales people left over from the turn of the century.

And to help clear up misconceptions many here have regarding what it means to have Universal Health Care in Canada we are require to have a referral to another province from both a medical doctor treating you and by your provincial health care provided e.g. MB Health needs to approve the cost to send me. Without both I can go but would risk having to pay for everything out of pocket. Not to mention that in Canada we do not have the freedom to see a specialist without being referred to by a GP (general practitioner doctor) first. So should I take this route on my own initiative I would also be required to move to Ontario find a GP then try and be referred to a specialist. Without following this protocol and going on my own MB Health has the right to refuse my claim sent back to them by another province's doctor who bills them. Not much different than a resident of the USA trying to deal with their insurance companies they are covered under.

Patients with such auto immune diseases can only speculate as to why their neurologists will not support stem cell transplants as a treatment option. Some of the theories that have been postulated are that their neurologists: (1) are uniformed or misinformed about the phenomenal success rates for stem cell transplant, (2) are relying on outdated clinical trial data, and/or (3) perhaps are financially influenced by the big pharmaceutical companies that make billions of dollars each year selling these extraordinarily expensive disease modifying drugs, & it is not in their best interest for people to go into remission from their MS (or other autoimmune diseases) as they will no longer require the services of a neurologist, and so they continue to provide their patients nasty and extraordinarily expensive disease modifying drugs, which might slow the disease progress a little, but will do nothing to halt the progression to disability, and also very often have very severe side effects. (Ps -- many neurologists also receive material amounts of money from these pharmaceutical companies that provide these disease modifying drugs for "speaking fees").

Unfortunately Stem Cell Transplants for MS & other autoimmune disorders remain only in clinical trials in Australia, UK, US & Canada. Unfortunately, it is also very difficult to meet the criteria inclusion for these trials, so many people are not able to receive treatment through these trials. Furthermore, it will also take many years until these trials are complete and stem cell transplants can be performed as a routine procedure that is covered by health insurance.

Stem cell transplants have been available as a treatment for MS and just a few other autoimmune diseases outside of a clinical trial setting in many other countries in the world (such as Germany, Israel, Russia, Mexico and other countries) with less restrictive inclusion criteria. Unfortunately, private health insurance will not cover stem cell transplants in these other countries.

Furthermore, here is a great description written by Sam Baar regarding the recent BBC program on stem cell transplant as a treatment for MS in the link below:

"This is a new 30 minute documentary from the BBC about Stem Cell Transplants for MS. This trial is going on in Chicago, the UK, and other locations. This is slightly different procedure than the Stem Cell Transplant I received in Denver for Stiff Person Syndrome a year and a half ago.

This is well worth watching if you have or know someone with MS or other autoimmune diseases. I expect that it will become FDA approved in the US as a procedure for MS rather than a trial in coming years.

MS is not the only autoimmune disease they are trying to cure using HSTC. Over 10 people have now received this for Stiff Person Syndrome like me and I hope more will! Autoimmune Neuropathy and Scleroderma are a few other autoimmune diseases they have done.

For many people that have become disabled from MS and other autoimmune diseases this is looking like a cure. It can stop the progress of the disease but some damage caused before may not reverse, some will!

This is a long procedure and is almost the same procedure you would have for blood cancers like leukemia.

Please do not confuse these academic FDA approved trials from the endless scams I see out there involving outpatient clinics that offer stem cell injections. These places are scamming people with little hope."

The same can be said for the trials that are being held in Canada

Here is the link to the BBC program:
Can You Stop My Multiple Sclerosis?http://www.dailymotion.com/video/x3n5jjl_can-you-st0p-my-mutiple-sclerosis-bbc-panorama-14th-dec-2015-720p_school

What Do I Want From My Doctor?

A few weeks ago I had an appointment with my neurologist, who was rather rude and short with me and my husband asking what is it I want from him.

 For starters and every time I am pass on from one neurologist to another I want a quality of life back.  That I will hit upon the doctor who went into medicine to help people, not to inflate ones ego.  Who listens to patients like me and does not talk over us, we can't have a patient knowing more about a condition when they did not go to medical school now can we!  Drop the ego down to a human level you are not God! That is what I really want to say.

My last appointment with him was in November when he took me off of my medication, he also reprimanded us like children because I changed my appointment date even though I showed him my email from my physiotherapist which in part read he would gladly see me in January instead of the end of February if I was doing as poorly as I was doing when J.F. saw me.

 Within a week of taking the last of my medications yet again my spasms came back full force and I went from having one to two a day, to having five on good days up to as many as twenty in day.  I know this because for the month of December we recorded them (check marked on a calendar) only the ones that last longer then a minute (128 not including the shorter ones) and the reason I bring this up to those who know or can image what a person who has these muscle contraction (and here is where I am going to switch the word spasm which sounds minor to contractions) feels like a life time, that honestly death would be kinder and easier to endure then the pain I'm going through and for my poor loving husband who has to stand and watch me go through or worry about me as I am alone all day when he is at work.

I and my husband also tried to have a conversation with him as to why he yet again thinks I would want to do this to myself or how a person has the will power to make themselves do this to themselves.  It's like a bad nightmare that I cannot wake up from, nor would I wish this nightmare on another person who has compassion for mankind.

I spend two days prior to my appointment typing notes, documenting what a week in my body is like, to be told he does not have the time to spend 24 -7 worry about one patient when he has many others he needs to tend to who have real medical conditions. He would not take my notes as it is too much of a time waster for him to spend 15 minutes tops before our next appointment in 4 months to read what I had prepared for him.  Really?  Am I sounding bitter yes.  Have I lost my faith in our health care system that I thought one got into because they wanted to help people, yes.  Is my will almost broken...sadly yes.

So to answer the question what do I want here is my list NOT that you have the time to care or want to hear:

Respect me as a fellow human being...the posters in all doctors office's these days say patients have the right to ask questions and has the right to care.  Why do you and all the others I've seen not see the hypocrisy of those posters as I sit and wait to see you, knowing the outcome of our 1/2 hour appointment?  It  also states that the staff will not tolerate abusive behavior yet it doesn't seem to work the other way,  you are being abusive to a patient allow someone to suffer.

I want to be able to walk longer then 10 minutes before my muscles start to give out on me and I look like a runner who has pushed their body pass the point at the end of a marathon.  Why do you think my physiotherapist contacted you,  I was in such bad shape even he could not believe how downhill I was going when he saw me, so much so that he said there was no point in seeing him until I am in better shape to work with without causing me more harm. Do you think I slipped him an extra  $20 on top of my payment for my session so he would contact you?  And yes I do pay for physiotherapy as the public system would not even work with me once they witnessed what my body was doing so I went private. Would a person who is trying to keep moving really pay out of pocket for help if they were doing this to themselves? And would my physiotherapist not have seen through my make believe condition a year ago when I first saw him and pushed me harder then he does?  I picked him because his objective is to help people return to work...which was my goal and still is.
 
I want to be able to prepare meals, chopping, stirring etc again a person should not feel like they just finished a 2 hour intense workout with a professional boxer doing something so simple.  I break down in tears trying,  that is not normal especially if you could have seen the entertaining I use to do for my friends and family.

I want to be able to dress myself without needing help. Why again would anyone do that to themselves reminder I am 50 not 2? If I go and visit my mother who is 86 she has to help me put my boots on, that works wonders for my self-esteem. You should try it some time, I'm sure you'd feel great about asking someone so old to help you parent or not.

I want to be able to go out to a mall, restaurant, anywhere but being a prisoner in my home.  I cannot do any of those things anymore especially on my own, yet I keep trying because you are making me have doubts am I doing this to myself but then reality hits and  I pay for doing any of these simple activities for days afterwards.  Even with my husbands help I last for a short of time before my body starts to go so rigid and the muscles start to contract so painfully I can barely move and we need to leave.  It has gotten to the point where he goes out and I stay home most times now.

I want to feel well enough to go visit my mom on a more regular bases,  although I sit at home most days (except for appointment days and the odd time when I will myself to get my mom out for her appointments) I don't have the ability or healthiness to get showered, dressed, drive and go visit her (if I am lucky I can once in a while but not as much as a person my age should be able) you are robbing me of time spent with someone who I love and the days are getting fewer and fewer in our lives.

Thanks to you I even missed Christmas with my family because I was in so much pain and woke up having non stop contractions that day we didn't dare leave home.  Chris and I spent the day debating whether I should go to the hospital or not because I was doing so poorly. Hospital or time with family which would you have preferred if you were not already a doctor?

I want to be able to enjoy a laugh even laughing can cause me to go into painful contractions again is that normal...if it is please show me how this happens to you.  You can ask my friends and family who have witnessed this happening.  Do you fear laughing? again if this is normal show me you having the same contractions as I do, if ones mind is so powerful.

I want to be able to stretch without starting to scream in pain and going into spasms/contractions. Can you last a day without stretching, people like me have to be aware and conscious of not doing even this normal function.  Unfortunately we are programmed to do so without thinking and when I do this it causes some of the worse and longest lasting contractions. Even my sleep gets disturbed because we do this function unconsciously in our sleep and I will wake up screaming...again please do this for me so I can see it happening to you. Heck I'll even take the time to watch your video, sadly I can't say you will reciprocate the gesture because we have tried, and again you don't have time to watch a less then 5 minute video. 

There is my partial list to you which was not as detailed as the one I tried to give you, but even that was too much for you.  I guess I should be grateful you have given me back some relief  by giving me back small dosages of some of my medications.  Not to worry I won't abuse them like you and others doctors before are so worried will happen.  This is where my ignorance comes in I don't even understand how one does abuse these medications that help them, that is where my ignorance lies.  But then again I am not an addict but a sick person needing help.    

Oh and as for our next appointment I still have not made it, by the time I left your office that day that you turned your head away as my husband helped me leave your office.  I was in such bad shape that my husband had to fight to help me get to the car and home to bed.  But not to worry my mind was still well aware that you  ego is intact for you and it means more to you then helping a person like myself who enjoys torturing  herself and yes she is grateful she is on disability as that is really all I wanted instead of relief from a make believe condition she has decided to give herself.

  

 





 

    

A Lesson in Tracking Triggers and how to Make Note of Them

I know my last post months ago I said would be my last but beside this being an outlet for me if I can help even one other person who is struggling with any type of  long term chronic illness to know you are not alone in all the thoughts you have along in your journey then how can I stop. Not to mention it gives me something to do and concentrate on. It also help to give me a purpose and somewhat meaning to the life I now live.  Also quitting is not an option for me and I feel if I do than the medical system has won and I won't let them win in making me believe I am making this happen to myself or to many other stories I hear/read on our online support group (s).  

During therapy with my therapist who deals with the chronically ill yesterday (this took me two days to type) we talked about what causes our bodies to manifest stress from a mental state that use to be so easy to overcome to a physical change and why our bodies react the way they do.   Good question and one that if it  was so easy to understand and figure out then I could cure most people who have SPS or think they have it who are lost in a vortex of a condition that so few understand except for the ones that experience it as their muscles twist and turn into violent and unrelenting pain. Not to mention can quickly take a turn to be a life threatening situation and being unsure when to make that call for help.  Ask anyone who witnesses a person going into a Stiff Person Spasm and they will know what I am talking about, it is a fine line of knowing when to make that call or try and ride it out. Being rushed to the hospital having spasms and trying to explain to them what they need to do as most if not all will have never heard of this condition and do not realize how quickly it can become life threatening.  Nor are we trying to seek medications that can save our lives, that a few have made it difficult for those of us not seeking to get high from.       

Prior to my session and as I stood up to go into the Doctors office the fire alarm went off and unexpected noise like so many of us, triggers my body to go into violent tightening of my muscles and the most excruciating pain one can only begin to imagine unless you experience it first hand.   Lucky for me the worse of the spasms only lasted about 10 to 15 minutes and although throughout the session the odd muscle would tighten  by trying to relax and concentrate on the topic at hand I kept myself on an even keel during my session.    The worse part to me is unlike my medical system I know and understand because our bodies have been put into this state  that the body fights to keep you in that state and any little thing will set our bodies to go off again at any moment.  ( it's very hard to explain to someone who cannot comprehend nor will take the time to educate themselves when our medical system is so over burden with more common conditions then those of us who have SPS, sadly) I and everyone who has this condition can attest this defiantly is not a condition for the weak as it could, can and will drive you crazy if you allow it.  It also does not help when the medical field at least where I live does not understand that not everyone will be a typical case and that there are many variants and no one fix is a cure all  to curb the symptoms that will creep up at any given moment.

Under our medicare it has been determined that I will receive 10 session and then I will once again be left to my own devices or if we had the money I could pay for private session and anyone who is on a disability plan unless you live with someone who makes a higher wage (at least in our case)  or you have no debt in life cannot afford to do.  I bring this up for a few reasons if you live in a country that covers unlimited session count yourself lucky.  Another reason to educate people at least in Canada who think everything is covered once you are forced into dealing with our medical system you are sadly mistaken and this is a warning before you receive news you are not expecting.   I am also going to share today's lesson for many of my friends who I know who are not covered where they live and too I know you cannot afford the help.  I hope it helps you, writing can be as helpful as the medications we take.

So for the next two weeks until my next session (and going forward for my own personal help when I have to work on this on my own again here is how one tracks their triggers. This too would be good to take with you to your doctors' appointment and leave them a copy that they will hopefully read).  I am to pick my most stressful event of the day (keep in mind it can be a good event too as that can be a trigger for us, I can go into spasm just by laughing!) and make note of it.  Some days may be from the low end to the high end of the scale, and pick a time when you are able to reflect back on the situation and write about it. 

Make yourself a spread sheet or grab a note book and make 6 columns: 

Column 1. Mark the Date

Column 2. Event (asking yourself the 5W's Who? What? Where? When? Why?) and write down what applies

Column 3. Emotional Rating  the scale is rated 0= Not At All, 1 - 4 = A Little,  5 - 6 = Moderate, 7 - 8 = A Lot,  9 - 10 = Most I've Ever Felt

Column 4: Emotional/Feeling Reactions ( you can have more than one E.G.sad, anxious, angry,  even happy etc)

Column 5. Cognitive Reaction (thoughts- what is it that makes this event so upsetting or ask yourself  why is this bothering me?)and explain why

Column 6. Outcome (What happened after initial reaction? What did you do? ( e.g. cry, argue, stomp  off, grit your teeth and go ahead etc) or in our case Then What Happened (did it trigger a spasm and for how long? what did you do to get out of it)

Using my example above when the sound of the alarm triggered my spasm was my most stressful event of the day so that was the first example we use for my tracker as I was in the 9 - 10 range. We were able to identify the what, where, why and when.  My Cognitive Reaction was due to the high pitch scream of the alarm going off unexpectedly causing the startle responds.  The outcome was although my system was still in a hyper state I was able to control the worse of the reaction through using meditation techniques we have been working on prior to this appointment and from them closing the door so the sound was not so strong as when the door was open and getting me ear plugs to muffle the sound. 

This little exercise I think would help anyone not just those of us with Stiff Person Syndrome  but any condition you or someone you know is battling even the healthy friends I have.  It's worth the effort I think and I hope it helps you and your doctors who are not listen to you to have a better understanding of what is going on.  

I Am Weary Let Me Rest

This will be one of the last post I write, of my story and journey.  I have not written in months, as the words and thoughts are lost and my last string of hope I  was holding onto was taken away yesterday.  I have to accept the fact that all my problems stem from being overweight and not exercising enough.  My final kick at the can so to speak ended with that statement, according to the sixth and final neurologist I will be sent to.  They have spent enough money and done more then enough tests on me according to the reports and  MB Health.  It's a full circle from when I started to write to where I am now ending my story.

I will keep this as short and sweet as possible.  People except those that live in this hell of being left untreated and not enough knowledge about this rare but not so rare condition known as Stiff Person Syndrome, through the different support groups I belonged and still will be for others.  For each and every one of you, I wish you all peace, love and hope you hit upon doctors who know and care about helping people.  For my journey came to a crashing halt yesterday... we are not made of money so going or moving to another place that knows and understand this condition and who could help me are too far from my grasp.  And my pleading and begging to be heard or sent to doctors who know this condition with each neurologist I have visited has come to pass in this city, but I am dreaming if I think they will cover the cost for me to be sent elsewhere. 

I have one month left of my medication which helped me somewhat but has not cured nor allowed me the ability to lead a semi-normal life is left and after that I am on my own again.  I am just seeking medications to feed an addiction I did not know I even had until they put me on it. But he did say if I find it too hard he will prescribe me one more month to get through the withdrawal  but that will be enough. 

 Step one in my latest chapter of this life will be getting the last of my affairs in order that is my main priority which sounds melodramatic even as I write these words but the last time they took me off my medication (which was a much lower dose then I am currently on) I almost died so I am not taking any chances and want to be sure my husband does not have that burden on top of all he has going on.

 Step two (if I make it this far) will be to find a job (somehow) which in my case will require me to work full time or because of our economy and the mounting debt we have required due to my not working and the cost you don't realize involved when one becomes too sick to work,  maybe even two or three part time jobs before my insurance runs out, to help pay the bills.   I too am unsure how I am going to do this as I can't see anyone wanting to hire a liability such as I am now little lone once I am off my medication.  Most days I can't get out of bed and dress myself without my husband's help, but that's okay as the doctor says if I change my diet and exercise more that problem will fix its self,   I have to start by believing in my mind that it will happen it's all within my power  to change the way I am I was told.  I did feel like Dorothy from the Wizard of Oz when that statement was made.   Only that was a make believe story and this is my life we were talking about.  If fairy godmothers do exist please come find me and fast as time is of the essence.

Through will power, and exercise I was told yesterday is how I will be cured. And if I could please have my physiotherapist call him so he can tell him to push me harder than he is.  Even with having 4 spasms/seizures in his office and falling as I showed him how I walked without my walker.  Ignorance truly is bliss I guess. But he can't wait to see me again in 4 months time once I am off my medication, have lost weight and begin a workout program.  My life will be normal again through my own power of belief.  He and I will see what a difference my life will have become in that time.  I too will be able to do normal chores like housework, dress myself. cook and even work again but I have to visualize it and see that I can,  I can't be as bad as I think I am I drove myself to his office and walked in there even with a walker which  proves it's all in my mind and I have made the decision to make myself believe I have a rare medical condition, one I might mention I had never heard of until my initial neurologist thought I may have, although he passed me on as rare conditions where not his specialty.  Looking back and with what I have bared witness to none of the neurologist I have been sent to are equipped in this city to deal with rare conditions.  But I guess again that is my problem not theirs.  

Driving home if I did not have the support of a small but few loved ones in my family, friends and strangers who have now become my friends or more like my family then my real family the thought came to mind for a fleeting moment to end it all.  I can fully understand those that do end their lives especially those that don't have any support system at home.  I remember a year ago talking to a lady online who had reached that point as she too was told it was all in her head yet again. I think that was her fourth or fifth neurologist too at that time, and the helplessness I felt as she lived on the other side of the world and I tried and so did a few others to make her believe that it was not her, only to find out she did take her life that weekend; which still saddens me to this day.  That is the ugly and painful side of having Stiff Person Syndrome...too many doctors are uninformed and don't know what to do.  But rather than admit they don't know what they are doing make the patients believe it's all in their head and only we the patient have the power to change what is happening to them.  

I promised to make this as short as possible most by now will have stopped reading anyway.  But in closing as my friend always reminds me I will end with a song that shows a glimpse of my soul at this time.  I Am Weary Let Me Rest.

Drill Sergeant Physiotherapist Round Four

I started physiotherapy again this time with a private instructor versus the long wait list to see the ones that are covered by our healthcare system and if you read my blog last year after my second time of going  to see him he said he could not help me.   On Tuesday  I went to physiotherapy  for the fourth time.  The first few sessions were with the same fellow who worked great with me and did not push me too far.  Tuesday was a total opposite experience which I am still paying for today, my drill sergeant as I will now call this person who I think is use to working with people who are healthy and can do boot camp training.  You know the healthy ones that make you feel like you are in the military and they are training you and pushing you to your limit and beyond, is who I have the pleasure of working with for this session. 

I still get that feeling with some in the medical field that if I just try harder and push myself I  will get better.  And the sad thing is in my mind I so want to believe this to be true that I push myself far beyond my limit.  And unfortunately or fortunately (depending on how one looks at it)  I don't know how I drove myself home nor could I get out of bed the next day without my husband's helping me I was so rigid.  Nor can I move very well today.  So tell me again drill sergeant of Tuesdays session how you helped me?

Which gets me thinking again why do I feel this way.  Well one reason is yes I am over weight so that weighs on my mind (no pun intended), but I could be 100 pounds and still not be able to push myself like I could even three years ago and  then I was heavier then I am now.  Our society needs to stop and really listen to people and who knows ourselves better then ourselves.   We also need to stop judging people by appearances and sadly in our society too much empathize is based on appearance alone.  Life is much deeper and people need to dig deeper then the physical appearance of others.  Remember the old saying never judge a book by its cover it's what's inside that truly counts and I am happy to say I am one of those people.    For those of you that don't you are missing a lot of getting to know some of the greatest people who can pass into your life and I feel sorry for you.  Sorry for going off topic for a moment.

Back even three years ago the movements they have me do I could have done for hours and not given it a second thought.  When I told her that some days I can do 6 - 8 reps of the gait movements and some days I am lucky if I can do 3 - 4 reps she said I need to try harder and do a minimum of 8 each day or I will not get any benefit from them trying to help me.   I asked her if she looked up anything on my condition and she said yes.  Okay then quit acting like my drill sergeant, it's not going to happen.

Before we continued she asked if I watched the recommended video's from my last session which the one was no longer on Netflix and the other I said I had watch the day before, this too got her holier than thou attitude to come out and she said "so you decided to watch it just before you came, so you would not get in trouble for not doing so".  Which I replied well I could have watch it this morning would that have made a difference or I could have not have watched it all.  Which would you have preferred?  What am I a 12 year old child or an adult close to 50 who can decide when they want to do something I did not know I was to run home the week before and watch it immediately that was not on my list!   I am so tired of others who think that by  being a bully or having that type of attitude is the way into shaming one into feeling that what I did was wrong.  And I am sorry as a person who is to be a professional you should have just been pleased that I had watched them at all.  Again drill sergeant, I should have yelled YES Ma'am and stood at attention I guess!   I was so ready to walk out at this point, but persevered.

Before we began my gait movements I also explained to her that the day before I had to use my walker in my own home as I was having trouble walking but yet today I only needed my cane, which again caused my drill sergeant to look at me like I was making up a story that she could not quite understand.  Welcome to my world I wanted to shout but just smiled sweetly, this is my life from day to day.

We covered doing the original movements that I have been doing as best I could. but because I was already stressed I was having difficulty doing what I thought I was starting to do so well.  Then she added another one which I can do a bit but then came the next one she wanted me to add.  She shows me what she wanted me to do.  I said there was no way I thought I could do it, she said come on try you have two of us on either side and we will be your support on either side should you need it. As  I did down I went which I feared would happen.  She then and I unwilling to give up tried one more time with the same face plant fall as the first.  So much for the support they were giving me!  As they helped me back up and got me to a chair my entire system went into stress mode and the spasms started she said oh well I guess we will leave that for now but you will get there.  Now I am not a quitter but really do you think someone who has a neurological problem that can cause violent attacks and cause one to fall face first into the ground really want to try that ever again?  Give your head a shake. 

Although my 1./2 hour session was over I told her I had to wait until the extra medication I always carry with me kicks in I cannot move, she actually seemed annoyed with me that I was taking up more of her time.

Finally after sitting for a while and we slowly made our way to the reception desk so I could pay for my torture session, she said to me I think we will let J.F. continue working with you.  Really do you think I would not have made that decision myself.   

Lesson learned if you are not getting the treatment, help and respect when paying for any type of service find someone with compassion and empathy and stick with them.  I know I will from now on.

I am A Shadow of Myself

The following story was written by a fellow SPS warrior who I came to know through the open Stiff Person Syndrome Group the only support groups for this condition is through Face Book which is kind of sad and tells you how rare and isolated this condition is.  We  have never met in person but one day I will that is a promise!  I feel humbled and honoured that she ask me to share her story she wrote.  The following are her words.   

Once I was a person of means, I had energy, smarts and the ability to use them. I was productive and I tried hard to use my knowledge for good.  I fought evil in my early years of life.  It was hard but I knew right from wrong.  It was an easy thing to know. If it didn't feel good it was wrong, if it felt good it was right.  Sometimes truth was hard to share as others did not want to hear it.  I didn't care I told the truth, I was not going to lie for others. Not even my mother who was the greatest liar of all time.  She was a bully, manipulator, deceiver and fraud.  I called her on all of her personality traits. She couldn't fool me like she fooled everyone else.  As a result she and I never got along; good and evil have a very hard time living in the same house.  You’re always fighting a force and I got tired of fighting that force.  So I left. I moved on, I made a life for myself.  It wasn't fake or phony; I surrounded myself with people of higher intelligence. I sat in on University classes to give myself a higher thought pattern and to learn how to think outside the box.  We don’t know what we don’t know, and I knew there was so much more than the small world I had grown up in.  I saw how the other side lived. I didn't ever expect to be rich; I just expected to live a rich life, to be free to come and go and to think and have an opinion and to matter in this world.  I wanted my life to mean something and to not be a mean something. 

I had many children, 5 they are at various stages in their lives, I’m here if they need me, and sometimes I need them.  They are all successful and success is marked in different ways.  Do they make money?  If that’s how you define success, then yes, 2 make more in a month than I do in a year.  One is a single mom now struggling to make her life better.  Slowly she is, I am not her judge or jury, I am her mom here to guide her and help her as she has helped me through my struggles.  Yes I did struggle.  I got a very rare disease that affected every muscle in my body.  Did my family understand?  No, but they stood by me and helped me every step of the way.  For that I will be eternally grateful. They have given up so much to help me live.  I will never stop paying them back for the love and kindness and help in even simple things like laundry or cooking a meal when your only 12 years old.  The things the younger two did robbed them of their childhood even though we did try to keep them busy with activities sometimes they just needed to stay home and make sure I was okay.  The maturity they showed was beyond measure and the love beyond what I ever imagined they would be able to show.  They did it.  With their help and my husband’s help I am recovering from a Stem Cell Transplant. It was almost harder than the disease? Which was knowing I was going to die, that was a given and a comfort somehow? It was settled, and then a chance of a life time came, now? I don’t know when or if there will be complications and I die from the transplant or something else?  Or will I go on to have that rich life that I grew up dreaming about.   Do I see myself yet emerging?  Or like the ground hog, just a shadow?  Or no shadow?  I’ll let you know as the journey continues I just don’t know what the final outcome will be. 

My life and our families life has been a roller coaster, many horrible things happened to our family, including extended family turning on us?  It set me back, I stopped walking, and going out. One of the things with HSCT is it doesn't stop the brain from resetting itself, so the body can become symptomatic again and mine did.  Its emotional turmoil that causes the symptoms to reappear and reappear they did. Much worse than while I had Stiff Person Syndrome.  I would caution anyone contemplating HSCT to ensure you have a very good counselor to teach you coping skills well before you have the treatment and to keep it going until your body is recovered.  These are skills I must now learn so that as life happens and it does, we as a family are not held back by my inability to function as a “normal” human being, a mom, a wife, a friend.  I was an extrovert and I find myself thinking only of myself.  It’s a selfish act that never before would I have come across that way!  It surprises even me. 

What kind of future do I see ahead of me?  I see one where we live in a place we all like, where there is a place to walk to and get to with ease. Where I can take a bus on my own and not freeze or fall as I no longer have any symptoms.  In order to do this I again have to learn these coping skills so my heart stops hurting and my mind stops dwelling on things that I have no control over.  People who hurt people are hurting too, I can see that and understand it yet when it’s directed at me it still stings.  So I have removed myself from their lives, I limit my conversations about them as the thought of them creates symptoms.  As I type this I feel the pain in my chest, it’s my heart.  It hurts. I never thought that anyone would ever be able to abuse me again.  However as I was still in the early days of recovering I was attacked emotionally which triggered my inability to leave this house or walk properly.  If I don’t tell you, you may not be aware of what’s coming your way or what’s going on when it happens. (I hope it never happens to you)  Do I live in a bubble?  Kind of, but my immediate family has learned to slowly tell me things in pieces so that I have time to process what’s taken place and to think rationally about how it will be handled.  This is something I could not do a year ago.  I've learned and they have learned that emotional upset hurts my body. It’s how it reacts to bad news.  There will always be bad news or good news, good news is awesome and I don’t feel stiff or unable to move.  So lots of good news is a great way to heal your body until your mind is ready for the bad news.  Having your family understand the triggers is huge.  No drama, no screaming or all of sudden announcements is very important.  I don’t do last minute! If someone wants me to go somewhere?  I must know ahead of time so my brain can process that “we” are going out.  Going out is a big deal because of the Agoraphobia.  If it’s planned and I know where I’m going, will there be food (diabetic) will I have to stand? Will I have to walk a long ways?  I can plan ahead, if I need my walker I can bring it. It doesn't mean I will use it but it’s my buddy and has saved me many times. It also holds a lot of grocery bags both on the seat and on the handles. Many times it made our life easier by not having to have my husband try to carry everything himself. So in a sense I felt useful. We do need to feel useful and needed.  We also have to keep pushing the limit on what we thought we could do and find out what we can do.  I try everyday to push the limit inside the apartment, I create interesting desserts and meals, I clean, I exercise, I do the laundry, I found an app on my I pad that allows me to practice singing.  My children clearly told me to throw my vocal cords away, but I know my voice is my gift from God, and that I must try to restore it and use it.  I found this by accident; it records my voice then gives me a score. (It was not accident)  I don’t know what the score means I haven’t figured that out yet.  I can play it back and listen to what I sound like. I am a critique so for me I know if I am on pitch or not. If not I hit delete and try again its okay it’s part of healing.  It’s fun. 

I went to a writing workshop; my husband brought me and got me upstairs and into the classroom, so now I am learning how to write.  My first story was on HOPE; my husband read it last night and asked me if it was real? “No, it’s a story. I had to write a story.”  He said it was very good.  That was nice to hear.

So now I’m off to sort the wash and to go downstairs, again I use my walker to hold the laundry, and the laundry soap which is very heavy.  I hope this gives insight and clarity and an idea of what lies ahead. It’s not an easy road but the bumps become less and less as you learn how to drive on the road without going into a ditch. Don’t allow others to bump you into the ditch either. If I go into the ditch? I now have ability to drive myself out of it.  It’s my thoughts that either allows me to go ahead or to stop me in my tracks.  I’m choosing to move forward, to stay on the road, and on my side of the line. I will clearly be watching out of the mirrors, the window and my shoulder check.  If you choose HSCT?  I am always here to help any of you who need guidance or grounding when things go awry.  Thank you for always being here for me.  Thank you for my immediate family that have preciously given of themselves at great cost for me.