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.   

A Lesson In Being Ill and Dying

Last Saturday night we lost a beautiful soul, my mother-in-law Alice.  Although the last time we truly spoke was at  Christmas due to both of us being  ill and our last Christmas together on earth was not  one either of us could reflect on with cherished and fond memories. My heart is at peace being able to say sorry to you before you slipped into unconsciousness and you telling me you were sorry too.

Our Christmas was over before it even started that day, you being unable to understand my condition  combined with your denial within yourself and hiding from all of us that you had cancer.   After a few days of sitting here and being able to reflect while the rest of your family takes care of matters it reminds me once again and one last life lesson from you to let the little things go mend fences long before times runs out, even if that person doesn't want to speak to you keep trying to mend that broken fence until they come around, this lesson is for everyone I know.  

Families at the best of times can be complex and hard to deal with.  People think that because they are family that somehow it gives them the right to treat them differently than they would say a friend, a co-worker even people they just met. 

Speaking for myself even Chris's  siblings are upset with me as I write this (in their minds I had no right to ask my friends and family to pray when she was 1st taken to the hospital, hence why I had to take that post down).  Nor am I  100% sure that over time we will be able to mend that broken fence. I can be sure that they will be madder still if they read this that I have over stepped my boundaries once again. But that's okay I was never one to follow the crowd and have always spoken with a logical mind and with my heart filled with the best intentions.  Watching what is taking place within the family dynamics  makes this an important lesson and one I hope Alice as you watch down on us will understand why it is important enough for me to write and others to read. 

For some reason as humans  we think we will always have time, that for some reason the hourglass will never empty. None of us think we will die (as crazy as that sounds) and maybe I have a completely different outlook having come very close to dying when I was in my mid 30's, seeing too the chaos when my sister passed at a young age and still having young children involved,  and now again watching the chaos surrounding your passing.

Speaking for myself my wake-up call came early in life and I started to get my affairs in order and everyone who reads this needs to do the same.  You need to have a plan in place and let someone, anyone if you do or do not have a spouse or children know what your desires are so that if and when that unfortunate time comes someone knows and can speak on your behalf.

Every adult with or without children you should have in place:

A living will here is a great article from the Mayo Clinic as to why this is so important  and only fair to those that are suddenly having to make split second decisions regarding what they think are the best or right decisions based on knowing you as a person...first fight once the family arrived was the decisions made by my husband and his aunts before his other siblings could get here, they did not understand that there was no time to wait doctors needed direction ASAP:

http://www.mayoclinic.org/healthy-living/consumer-health/in-depth/living-wills/art-20046303

You need to have a will in place for when you pass and let someone know where that is regardless of whether that person is your named executor or not.  If you do not have a will in place  there are many articles to be found on the web about how to go about this.  Because the laws vary from place to place be sure you are up to date based on where you live.  And review your will every few years in case there are changes.  If you do not have a will in place it becomes harder for the family to take over and deal with the issues at hand,  they need to apply to the courts before they are able to proceed and take over your affairs. Many people do not understand the process that happens when this is not in place. 

You need to give someone you can trust all your passwords.  In this world of technology we live in, we have become online junkies but don't think about this when we are ill, dying or have passed away.  A friend of mine Danielle passed away four years ago from cancer and at the time she lived in BC.  I did not think about something as simple as her Face Book account being still active until I received a message saying "today is Danielle's birthday send her a message," it broke my heart that day.  I contacted Face Book but  because I did not know her password and I had no legal right to ask them to take her page down it is still alive as if she was today. It was sad to un-friend her as she was a huge part in my younger days but that was the only way I would not receive a notice each year from a robot.  And unfortunately she had no family left to take it down, nor did she leave direction with anyone...which also made me wonder what else did she have accounts online for that should have been closed.  There are so many online places to have accounts today and I know again speaking for myself my husband knows and so will my named executor(s) so these can be shut down when the time comes, as I do not want anything open online once I am gone.

Do you have a burial plot, and have told someone?  I know this may sound morbid to some of you but pre-plan this.  I have my plot picked out and paid for; again to not leave heartache to those left behind, nor do they need to guess what Chris and I want.  Dealing with the death of someone is hard emotionally and depending on the family can cause bitter fighting within.  Take care of it while you can,  why leave it in the hands of those left behind, emotions are high, fighting starts,  everyone may have a different idea of where or what should be done.  And I hate to say it but it's a huge expense no one needs during their time of grief and adds stress to an already stressful event in life. Especially if no plan is in place.

I am not writing this for malicious reasons or to cause harm to any one, I have watched this happen too many times now and want  everyone that I love and cherish  to think long and hard even if you do not have close family, choose someone close to you, someone has to take care of you, should you be unable to speak for yourself and in the event of your passing.  Many years ago someone I know who had fallen out with their family and had not spoken to them for years finally decided it was time to make amends, after much research they found their only remaining  sibling was buried in a pauper's grave, they did not even know that their family member had passed away, little lone that they were buried in a pauper's grave.  That too is why I am giving this advice.

As for our current situation I know the families anger at Chris and I stepping away to you seems selfish but we are and were fighting not only my own medical battles but were in your absence on behalf of your mom for a long time now. We knew even if she felt like she was fooling herself and us of how sick she was. We needed time to grieve just as you did before you flew in and we too will be the ones left once you all go back to your homes in the coming days.  Your mom's battle is over and peace is within her. 

As for my husband's siblings at this time I wish each of you peace, love and remembrance of good times, once the dust has settled and you have time to reflect after our remembrance in honouring mom yesterday. 

In loving memory Alice and as your laughter still rings within my ears from me to you one of your favorite songs 

Those Were The Days

Understanding The Medications We Are On

A few weeks ago I received a very personal and touching email from a fellow SPS warrior about the medications we are put on in helping those of us - either positively diagnosed with Stiff Person Syndrome or those like me that neurologists I have seen  are still on the fence about (one says yes, one said no and one is still trying to decide, but is almost certain I have SPS based on clinical presentation the uncertainty comes from my GAD test coming back negative but many have been diagnosed without being GAD positive)  they keep trying different medications and dosages to  help in any way to relieve some of my symptoms.  I also follow closely the open and closed groups on social media that I am able to find regarding SPS, I've read and study all the different medications people are prescribed, which is one of the reasons I am writing this and also in respond to the email I received.

I've  read and seen many people fighting either within the different groups, or at home with their loved ones. They express their frustrations,  up and downs and their moods clearly comes through with what is written or said to others.  I also read many sad posts of people who have given up and lost faith in getting the help they need.  Unfortunately some leave the groups, their families break -up  and others attack others on the support groups which has caused a lot of tension with some groups threatening to shut down.  Long before I was put on many of these medications that others are on;
I in reading the words spoken made me wonder if it has to do with the medications doctor's prescribe to us.  Many are on a combination and some are put on such high dosages that the average person would be in a coma, and I am not trying to be funny. Receiving the email I did made me realize that I am not the only one who felt this way.

As advanced we like to think we are medically wise, sadly to those suffering from chronic conditions that the human body has far outreached the medical field in their "expertise".  Especially for myself and others struggling to get a proper diagnoses of SPS.  I am not only struggling for myself to be heard but also to get the message out to others first and foremost don't give up! But also you need to understand what you are being put on, the side effect and especially when you are put on multiple combinations of these drugs at a time.

Personally speaking some of  medications they have tried and taken me off of, I have been on low dosages, high dosages some medications far more dangerous then others and some are so dangerous to a person's system that once my doctors have realized were not really helping me or making me worse, I  had to be slowly weaned back off them.  Imagine my (and all of our) friends and family who are healthy taking that chance to go on a medication(s) so detrimental to your well-being but being so sick that you are willing to take that risk and maybe you will get a glimpse of how real and life changing this condition is.

The most common medications we are put on, are in the Benzodiazepine family, also medications in the anti-epileptic family and many different types of muscle relaxers. They all have many of the same side effects, the most common are:

• anxiety or agitation
• confusion
• falls and fractures
• fast, pounding, or irregular heartbeat
• hallucinations (seeing or hearing things not there)
• memory loss
• mood or behaviour changes (e.g., aggression, rage, anxiety or excitation)
• fatigue or trouble sleeping and nightmares
• signs of depression (e.g., poor concentration, changes in weight, changes in sleep, decreased interest in activities, thoughts of suicide)
• amnesia or forgetfulness, trouble concertinaing
• dry mouth,  and blurred vision
• swelling of feet and ankles
• appetite changes either weight gain or loss

To quote in part the email I received "The medication I was on at the time was : Gabapantin, Tizanidine , Valium and large amounts of Ativan as needed. I'm not giving out the dosage as it isn't important, what's important to me is to be honest and realize that the medication that helps our bodies move affects our brains. I know I became somewhat Paranoid. Someone had told me a few years a go that Gabapantin was affecting me. One of the side effects was rage, anger and outbursts. So I went to the doctor and he helped wean me down to a reasonable amount that still controlled the nerve pain as well as seizures. However the other medications remained the same as they were very necessary in allowing me to move or walk.
When our brains are affected we don't know about it. It's no different from some other diseases where the medication controls schizophrenia or depression and once the patient feels better they no longer think they need the medication. Well in our case we all knew and know we need these medications to help us be mobile. The problem is most of the medicines used for Stiff Person Syndrome are flukes meant for other diseases and we ride on the coat tails of their diseases in order to control ours."

I know myself and reading what other say we need to truly understand and be informed about what we are taking just like my friend above mentioned.  Since being on a higher dosage of my medication I know my thoughts are more muddled then they use to be, I suddenly forget words in the middle of sentences, or lose my train of thought completely. I know I cannot go out on some days when for some reason that day my medication makes me feel so zoned out that  I could be a danger to myself or others, even with my husband being there to help me.  I am afraid to speak to people some days too for fear of what I might say.   I have read and understand that my medication although helps me in many ways with my mobility can and does affect me emotionally or have outburst that if you did not know the side effects of what I was taking you would never speak to me again or think I have totally lost grip with reality.  I get angry out of the blue and lucky after having a serious conversation with my husband one night I helped him to understand and realize that it's not me but the medication making me behave in a manner that does not reflect the person I used to be... we have a code word and I think it's important everyone learns this skill and the earlier the better for them and their loved ones.

 I often read people asking others in the support groups about what they take, side effects etc, but they need to be aware of the changes in themselves...become more aware how they are affecting you not what others are going through everyone's genetic make-up is different which is why some medications work for some and yet may not work for you.  Everyone is on different medication combinations, dosages and  treatments.  Only you can be responsible for you!  We can offer advice etc but it comes down to you educating yourself and being self aware more then relying on the advice of others. Everyone that reads this on the support groups, or has a conversation with their main caregivers need to realize this and learn on their own and take note of how these medications are affect them personally, and any serious changes in behavior or complications you feel you are having need to be addressed with your doctors.

As for the email sent to me, my friend  is now on lower dosages of the medications we take and was lucky enough to be part of a clinical trial study with stem cell research and has a clearer mind as she is slowly being weaned off the medications she was on for years. She had made at the time some irrational decisions that could have ruined her family but was lucky enough like I feel I am by having a serious talk with her main caregiver and offered good advice which I would like to share with her permission;

"We or I truly believe that our caregivers have to have common sense and let that prevail. Somehow he needed to recognize when my thoughts were not or are not rational and take over for himself without any input from me. But he loves me and for what ever reason he did what I wanted him to do. I'm sad that I did this to our family that they have seen my outburst and I don't remember even one of them. This is the disease as well as the medication. I know for a fact that Valium replaces the enzyme missing at the base of the brain. It's what gave me the most freedom in a very short period of time. The first dose was 2 mg at the doctors office and withing 10 minutes I was walking without any help and my gait had changed dramatically. The side effects? Please take the time to read about each medication that you are on or have your care giver read it so that they understand when we are having a lucid moment or when we are out of control. I was out of control and had no idea. 

I truly hope this helps others to understand and again if I hurt anyone's feelings I apologize. I really am sorry to my family, my friends and my SPS family. If you are aware that this can happen to you too it would be wise to have a power of attorney written up. We had this in place where we lived as well as a health directive. It was our saving grace. At least my husband was assured by this piece of paper that I could never sell the house, or change anything of major importance without his signature. I no longer have a credit card in my name. As my health improves and it is, I will re build my own credit and work hard at raising awareness for Stiff Person Syndrome. We still need to be there for one another as best we can. At this time I am no longer in any SPS groups as I need an absolute stress free life in order to heal completely. My heart and my prayers are with you every day. I have always and will continue to always pray for all the people I have met through Face Book with Stiff Person Syndrome." 

I  hope this post will make you pause and think to yourself is this the real me talking, being aggressive and hurtful to people or is this the one now taking multiple combinations of medications.   I would also say to those that take things personally again is it the medications making you react or is this the real you?  Remember we are trying to cope with a condition that we know more about then most of our medical professions we rely on or our family and friends. Stop, pause and think about what you are about to say or in how you will respond before the knee-jerk reaction sets in ( I myself did this last week from something that I felt very strongly and passionately about in one of the groups, but stopped myself and realized I would do myself more harm then good by letting my anger and frustration out).  If you still want to express your views after you have taken time to pause and reflect then do so in a respectful manor but I think you will realize if you take a moment and really think about how the stress on either yourself or someone else you talk to you and how much harm you will do to yourself or that person you will dismiss those thoughts before they come out. At least I hope you do...I know I have many times... my frustration is mostly with myself , the lack of understanding from my medical system and my condition becoming worse with the things I can no longer do, not with others fighting their own battle.

Picture The Pain

Happy New Year!  I know the month is half  over and I have not written a post since November but so much has happened and with the holiday's and cold weather settling in the month of December has been rough on this crazy journey of mine.

I know I speak and post at times a lot about pain and my condition but I truly believe there are more cases being misdiagnosed and this condition is not as rare as believed.  They call it the one in one million syndrome but I believe that saying should be changed to one of the millions who are misdiagnosed, and my purpose has become to spread the word even if it is one person at a time.

Thank you to those that were as excited as I was to be put back on my medication and possibly having a shot at another treatment plan.

I am happy to report  that since being put back on Diazepam and a much higher dosage then my other neurologist tried,  I can walk freely now for longer periods of time without feeling that with each step I'm going to fall over or actually fall over as my back muscles are so rigid, (imagine yourself walking in concrete and that is what I experience everyday as I try to walk).  I also have movement in my neck again without pain...may sound non-earth shattering to those who are healthy but to me and those that understand it's a huge improvement, to be able to hold my head up for longer periods of time is heaven.

One misconception that I would like to add is this does not cure me of my almost daily and sometimes multiple times a day spasms which can occur from emotional distress, a sudden noise, a touch or as my video will show a slight twist of my body a movement I did without even thinking about what I was doing.   What you will see can last for seconds, minutes or hours I never know, nor do those who witness them.  They also can come out of the blue and unfortunately I have little warning when I am about to go into a full blown spasm.

I know I have mentioned having body spasms and how the muscles move, twist  and go ridged without my control which  is the most unbearable pain I would not wish on anyone.  And I am now ready to share what a body spasms looks like please keep in mind no two people with Stiff Person Syndrome are alike.  And  my new neurologist by listening to me even through my tests have been negative has willingly put me on a higher dosage of that medication which helps give the  proof needed for those of us who's tests all come back negative that we do have Stiff Person Syndrome.  This to me was also proven the night I went into the hospital and they put Diazepam and Ativan via intravenous into my system to stop my body attacking itself which works much quicker then taking it orally. To those fighting to be heard please  keep fighting to have doctors understand you are not a drug seeker as so many believe is the case when you ask for higher dosages of medications deemed addictive.  Nor are you making up your condition and it can't be as bad as you say. I am not looking for sympathy by sharing this video just an understanding for all of those fighting that this condition is real, and yet because we look normal and show no outward signs of illness in a flash this is what can happen to us.

 This video was 10 minutes into a 15 minute spasm, which also is why my head is no longer on the pillows which help me as sometimes I suddenly can not swallow or breath properly during my spasms but Chris knows during this time not to touch me as he will make my spasms worse, unless he realizes I am in total distress and will move me. You will note how it moves from muscle to muscle so you can imagine the strain it puts on your system.

Also I would like to mention to those who I promise to call, visit etc once you watch my video I hope you have a better understanding as to why you suddenly don't hear from me, or why I cancel plans at the last minute, put yourself in my vulnerable place not knowing when or where this will happen, and then maybe you will understand,  Agoraphobia is becoming an issue as this condition takes over my life and others with this condition too.