30 Things About My Invisible Illness

1. The illness I live with is: Stiff Person Syndrome(yes it's real) among others but this is my main one

2. I was diagnosed with it in the year: 2013/2014

3. But I had symptoms since: 1996

4. The biggest adjustment I've had to make is: learning I can no longer do the things most people take for granted, I try but end up making myself go into spasm and then get frustrated

5. Most people assume: I'm not the same person....although my mobility is greatly reduce my personality is still the same

6. The hardest part about mornings are: wondering if I will be able to get out bed or will this be the day I become bedridden (a great fear of mine)

7. My favorite medical TV show is: don't have one....I use to watch medical mysteries hoping I would see a story that was like my condition and only found the show on Stiff Person's after my diagnosis.

8. A gadget I couldn't live without is: my tablet for the days I can't move well it gives me something to do, and my phone in case I need to call for help

9. The hardest part about nights are: trying to find a comfortable way to sleep... and once asleep waking up because I am stuck in that position and need force my body to move to another position

10. Each day I take 12 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: would be willing to try some options if I felt it truly would help me, but not because someone read something somewhere I like treatments back up with actual facts.

12. If I had to choose between an invisible illness or visible I would choose: invisible so I can trick myself and others into thinking I'm fine (even at times when I am not), except when people stare at me using a handicap space on my bad days, on the outside I look fine but on the inside my body would tell you a different story

13. Regarding working and career: I never realized how much work defines a person in our society until I was unable to work

14. People would be surprised to know: the odds of this disease is 1 in 1 million, when you put that in prospective that means only 35 people in Canada have this... if they are lucky to be diagnosed

15. The hardest thing to accept about my new reality has been: losing my independence and accepting help I was always the one to help people and now that I need it I am not comfortable asking'

16. Something I never thought I could do with my illness that I did was: still find happiness and being joyful each day (once I got over the anger)

17. The commercials about my illness: do not exist due to it being so rare

18. Something I really miss doing since I was diagnosed is: going for walks with my husband, swimming and going out dancing

19. It was really hard to have to give up: cooking up a storm and spontaneously going out

20. A new hobby I have taken up since my diagnosis is: I have always been a voracious reader and so glad that I am(my favorite hobby), but for new that would be my blog it helps me express how I am feeling, the highs and lows

21. If I could have one day of feeling normal again I would: bend down and putting lace- up shoes on (have not worn lace up shoes in years unless Chris is home to help me)....then run away 

22. My illness has taught me: how quickly life can change and how for granted we take each mundane and simple task we perform daily.

23. Want to know a secret? One thing people say that gets under my skin is: how they think they know some magical cure, even with not knowing anything about my illness but a name, and it bothers me how others laugh when they hear the name Stiff Person Syndrome. People it's not funny, educate yourself then if you still find it funny tell me so I can laugh when I'm trying not to scream when a spasm hits.

24. But I love it when people: call me or even better call and tell me they are coming over for a visit

25. My favorite motto, scripture, quote that gets me through tough times is: I shall pass through this world but once. Any good therefore that I do, or any kindness that I can show any human being Let me do it now. Let me not defer nor neglect it. For I shall not pass this way again.

26. When someone is diagnosed I’d like to tell them: I'm the only lucky person in Manitoba to have this but I tell myself to "stay strong" and would say the same to them.

27. Something that has surprised me about living with an illness is: how people's words and actions are so different. I think I always knew this but now the reality is hitting home .

28. The nicest thing someone did for me when I wasn't feeling well was: whenever I am having a bad day and my husband makes me smile through my tears like today when he started blowing on my back when I asked him why he was doing that he said "I'm trying to be the wind beneath your wings". How lucky can a person who is ill be with support like that.

29. I’m involved with Invisible Illness Week because: To bring awareness to a crippling disease 

30. The fact that you read this list makes me feel: grateful that you care to have a better understanding what life is like not just for me but for others with any type of long term illness you may encounter in your life.

Don't Judge Someone On Their Appearance

The misconception of looking fairly healthy to a world that bases judgement on looks.  I know people say we are not that shallow but as sadly that statement may sound it is true.  I was guilty of this myself, how many times did I see a person pull into a handicap space and hop out and I would think to myself hmm someone with a true disability is not with you today but let's use that wonderful handicap placard... feeling lazy today?  Like a twist of fate I'm now one of those people that other stare at.  We all do it.

The other day I was feeling fairly good so I ask my husband to get our laundry basket out before he left for work and I would try and do a load of laundry.  He did not want me to as he knows I have difficulty with the front loaders in our building but I was determined.

 Down I went loaded a washer and felt good so came back up and got another load to take down.  When I went back down close to the time it would be done I took my book with me to read while I waited.  As I sat, next to me an older gentleman in the chair beside me was talking to another elderly person in the laundry room.  I see my washing machine is almost done and went to get up as I did so my legs started to give out on me and I staggered as I got up and grabbed the machine closest to me to try and steady myself.  I could tell from the look on their faces they thought I was drunk.  As always I right away went into defense mode and explained I was not drunk I have a muscle disorder that makes my body give out on itself at times.  A moment of silence ensued finally the older gentleman piped up and said but you look so healthy.  As anyone who has an invisible disability I smiled and said I know funny how looks can be deceiving.   They both then began to ask about my illness which was sweet and I explained as best I could. As the conversation was ending the older gentleman said funny we are older and think here is a young person who can help us and yet we should be helping you.  I kindly declined their help but another lesson learned even to an older person never judge a person by their appearance.

I hope you never judge a person again by appearance, you never know what is going on inside, we don't all wear a sign that there is something wrong.  I know I have learned that lesson myself the hard way, I hope you never will.

Shh I Am Having An Affair

Shh I am having an affair....you know the one that most working people who are sitting at their desk, standing at a counter or doing any type of manual labor at work are dreaming about.  I used to dream at work about having this affair too....it's with my couch.

Any person who is ill with a disabling condition will always have the people who call and ask what you are doing and you say " lying on the couch not doing much",  either get the responds "I wish I could do that" or the opposite "maybe that is why you are having such trouble you need to get moving".  You know what you are right I/we love spending day after day lying around removing ourselves from society, having fun, earning a living. (the list could go on and on), but I prefer to waste my days rather then moving, quit judging me lol.

I will be fair to those who are not living the life I now myself find myself in.  A healthy person thinks I would love a day just to lie and do nothing it's great for a mental health day (we all stole a day or two from work for those days, many still do and if you don't you should) .  But now put yourself in an ill persons body doing that day after day knowing that no matter what you tell yourselves this is all you are capable of doing today.  Maybe I/they will get lucky and have that one day where I/their bodies become able and I/they push themselves and regret it for the next week or so.  

How often when you get the flu or cold did you spend a day or two lying doing nothing? Moving well that only makes you feel worse!  But finally you tell yourself get up and get moving you can't stand lying around anymore, an ill person does not have that option.   Next time all the wonderful people in my life get sick and cannot move but finally that day comes back when you finally feel well enough to get up again, stop and listening to your mind telling you to get moving but your body won't move and then tell me how lucky I or others dealing with an illness has it.  We will trade with you any day you would like.  Speaking for myself I'll even let you keep those days I know I'm very unselfish you're welcome.

As for my couch I would like to break off this affair, even though you are kind to my aching body, soft, warm and allow me to go brain numb watching daytime TV.  I have decided after almost a year of our affair it needs to come to an end,  it was fun at the beginning but you have become my enemy you need to get out of my life now....no...okay you win... maybe tomorrow.

Bad Days

Having a bad day today.  When I woke up this morning I could barely move, my entire body from head to toe was so rigid it took awhile to force my body to move so I could try and get out of bed.  Thank god my husband was home he need to help me out of bed and to walk to the bathroom, I would have been unable to do it myself.  This condition can be cruel you  can be fine one minute and the next your body freezes but yet at the same time your muscles are twisting.  How to describe it... everyone has had a charlie horse  now picture your body having a charlie horse from head to toe.   Unlike a charlie horse however imagine not being able to stretch it out or massage it as that will make the pain come on stronger and last longer .  That is the best way I can describe what is happening when a person with SPS is having an attack.

The other problem I'm having today we live on a main street with lots of traffic, near a hospital so the noises from sirens, cars honking at each other and the constant beep, beep, beep of snow plows clearing the snow covered streets are causing my muscles to spasm and I am unable to calm them down.  I don't know why noise causes the spasms to come on strong and seems to never want to stop.  I have to wear earplugs on days like this, or I will sit with my headphones that have noise reduction capability and listen to music just to try and help my body to relax.  I have yet in my research to find a reason for this, they know unexpected noises can trigger spasms but as to why they cannot figure it out. 

It's hard to be a prisoner in your body,  especially a person like myself who always did whatever without giving it a thought.  Now when I do go out I have to plan it like a military strategic  plan, and I know when going out I cannot do anything but basic needs if we have a hope of making it out the door.   I can only plan on one maybe two tasks before we need to head home.  Gone are my days of spending a whole day out and about and still have the stamina to go out at night too.

I have told my husband and friends I wish sometimes my mind was failing along with my body it can be another cruel twist of fate when your mind is perfectly fine but you can no longer do the things you tell yourself you can.

The other night watching a movie I wanted to get up and get a drink I stood up but I could not move.  It's like being a child learning to walk,  I made it to my feet but I could not get my leg to move my husband told me he would go for me but I refused (I can be very stubborn) I also still believe if I walk it out I'd be fine (denial is a constant battle in my mind).  It took me 10 minutes to walk from one room to another that should take me maybe 20 seconds.  The frustrating part is my husband had to walk behind me like you do when your child is learning to walk.  He held me by the shoulders and kept me steady for had he not,  we both know I would have fallen down like a plank of wood, another cruel twist to this condition is our bodies don't have the defenses to brace ourselves if we do fall, we go straight down which is why so many break bones some can have such violent falls and if their muscles are spasming  you can also rupture muscles. 

Not pleasant....just a few examples I thought I'd share again for a better understanding of what it is like for me living with Stiff Person Syndrome.  Everyone has different experiences with this condition which can also be frustrating living with SPS, what work for one doesn't necessarily work for another person.

Rate Your Pain From 1 - 10?

How often do you get asked rate your pain on a scale from 1 to 10?  When you are a person who does not suffer from a chronic/terminal illness this scale has a total different meaning.  Most would rate themselves somewhere between a  four or five when they get the flu or a cold, and as they get better the number goes down. 

For a person with a chronic illness the scale is completely different, most will never again have their scale go below  4 or 3.  My girlfriend suffers from Fibromyalgia and we often talk about what we read anything that may help one another and just lifting each other up on bad days.  She one day asked me where I would rate my pain based on the Wang-Baker scale?  When I asked her what she was talking about she said "you know the scale when you are asked rate your pain from 1 to 10?"  So I said on average from a 4 - 5, not realizing how far off I was. To a healthy person with the flu or cold I was rating myself pretty good, to a person who can no longer dress herself some days, or lift herself up from a seated position, or stand for long periods of time no wonder doctors did not see how bad I really was.  Doctors are basing their assessment of pain from their patient when it is possible that their patient has never been explained just what they mean by this scale when they ask.  Most people would rate themselves somewhere in the middle it's human nature.

My advice to anyone  suffering and if you did not know the true meaning of this scale prior to reading this like myself my advice would be to take a copy of both these scales with you to your next appointment and discuss your rating with examples, maybe then a lot of misconceptions and confusion could be avoided.  The medical profession needs to understand that everyone's pain threshold is different so a lot of people may be off the mark with their rating just like I was. Too if people have been suffering for a long time that again would make a person rate themselves lower then the normal population, the mind has an amazing ability to make you think you are doing better then you really are.

 THE PAIN SCALE

0  –  Pain free.

Mild Pain  – Nagging, annoying, but doesn't really interfere with daily living activities.

1  –  Pain is very mild, barely noticeable.  Most of the time you don't think about it.

2  –  Minor pain.  Annoying and may have occasional stronger twinges. 

3  –  Pain is noticeable and distracting, however, you can get used to it and adapt.

Moderate Pain – Interferes significantly with daily living activities.

4  –  Moderate pain.  If you are deeply involved in an activity, it can be ignored for a period of time, but is still distracting. 

5  –  Moderately strong pain.  It can't be ignored for more than a few minutes, but with effort you still can manage to work or participate in some social activities.

6  –  Moderately strong pain that interferes with normal daily activities.  Difficulty concentrating.

Severe Pain – Disabling; unable to perform daily living activities.

7  –  Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships.  Interferes with sleep.

8  –  Intense pain.  Physical activity is severely limited.  Conversing requires great effort. 

9  –  Excruciating pain.  Unable to converse.  Crying out and/or moaning uncontrollably.

10 –  Unspeakable pain.  Bedridden and possibly delirious.  Very few people will ever experience this level of pain. 

Wang-Baker scale:

My days are from a 7 -8 and I often have days that can be a  9 heading into 10 because I can't get out of bed.  When my illness 1st started I was rating myself correctly but for the past few years I should have been much higher. How about you?  Are you rating yourself correctly?

Support System

If you want to find out how strong your relationship is get really sick (kidding) I don't wish an illness on anyone, but trust me when I say this. 

I am one of the lucky ones, I have read or seen in my own world people struggling with being ill and that one person you think you can rely on turns away from you.  I think back to my sister who passed away and can only think of her with an aching heart knowing that her husband was one of those that turned away.  I cannot imagine how hard it must have been for her. 

I have a wonderful husband.  I cannot stress how important a support system is when you are chronically or terminally ill.  If you are one of those struggling with dealing with a person who is ill in your life, spend a moment and think of yourself in their place there are no guarantees it can't happen.  Not one of us wishes our lives to be turned upside down , but those who you love and watch decline are life lessons to you.

If you don't have a spouse, I hope you have a close family member or a good friend who you can turn to.  For anyone who is supporting someone who is sick I urge you to think of ways to support that person, my lesson from watching my sister and now me here are some do's and don'ts of my own personal advise I would like to pass on:

I have learned laughing truly is important.  Don't wallow in self pity for long...you won't help yourself and others are liable to turn away.  Having a bad day pick up the phone if you are alone and talk to someone you know will pick your spirits up.

 Go to appointments with the person whom you are taking care of/ if you are not directly taking care of them but know they need support offer to go with them they may be reluctant but by showing compassion and they are comfortable in knowing you truly care the support will mean the world to them.

Do not trivialize their illness because you are not comfortable dealing with it....let that person know  you would be surprised to know some of the thoughts you have we have too because of the unknown.

Allow the person to cry, it is not a sign of weakness or of giving in.  Sometimes just like when they were healthy crying releases pent up anger, frustration, confusion and even joy. 

Even if you know your friend or family member has a spouse do pick up the phone once in awhile, send a quick email anything to let that person know they matter in your life.  We all get busy in our lives when I was still healthy I was guilty of this myself but I also made an effort to call my sister a few times a week just to say hello.  I can place myself in her shoes now and realize how important that call was to her well-being , it can be lonely sitting at home all day especially if you have an illness that prevents you from going out.

Don't think because we can't go out today doesn't  mean we never can. Some days are better than others  and we may not be able to go out for hours but even a short outing can be a big event now to someone who is unwell. And makes a world of difference to someone's mental health.

If we can't go out offer to come over and visit.  Just remember to not pass judgement on how a place looks if they have no one at home to help them.  I have never heard when someone has passed away did you see their home and how messy it was?  No one really cares in the big scheme of things.:-). 

If they have children offer to take the kids out for the day.  I don't have little ones but I know my sister loved it when I came over and either played games with her boys or took them out.  I use to call and offer to make dinner and have a game night with them at their home....I know how much again that meant to her.

I could go on and on but will leave it at these few for now but I know I will write about this more as I continue my meandering thoughts. ;-)

Finally I am Diagnosed

I have my appointment with my new neurologist the one that is more specialized in rare muscle disorders that my previous neurologist.   I have waited another 4 months from my last visit for this one to take place.  I finally hear the words I have been waiting for... you have Stiff Person Syndrome.  It took a minute for it to really sink in,  I am not crazy?  No denying it's real that I am not a  hypochondriac. He wants to re-test me for GAD 65 as he fears with all that happened it was done incorrectly, same with my NCS/EMG as he watched my leg muscles non-stop twitching.  He has no doubt that is what we are dealing with.

He starts by asking me to describe what I am experiencing:

I can no longer walk for long I start to tremble and my legs start to give out on me.
I can no longer do basic household chores.
I can no longer take baths I can't get into a tub without falling down, my brain knows what my body should do but I can't get my body to move the way it should
I am having trouble swallowing, again my brain knows what it should do but I can't get the muscles in throat to do the action, the only things that gets them working again is to drink water really fast to get them to work the way they should
I cannot sit upright for long periods of time the muscles stiffen up so bad I can't move
I cannot bend forward as the muscles start to spasm and push against my rib cage
I cannot stretch again my whole body feels like an electrical charge is going throughout

The list could go on...

He said from the moment I walked he saw my legs were not bending like they should.  He tried to get me to walk a straight line like they do on a sobriety test and I could not do it.  Even trying to start by putting one foot in front of the other I started to fall, and as I tried to lift my leg to move it in front of the other it was like walking on a balance beam only I kept falling off.  I can no longer lift myself on my heals or the tip of my toes.  Having me stand with my arms out and eyes closed he had to grab me as I started to fall backwards.

You can not believe the validation I felt at the moment as much as I would have preferred some other outcome, to wait 17 years to hear the words that you really have an illness I think the weight of the world lifted at that moment.

I am on a low dose of diazepam for now until my next NCS can be performed but at least I know what I am dealing with.

As always with our wonderful medical system is I have to wait until April for that test but the great thing about this wait is he is the one who is going to preform it.

Empathy?

I love seeing posts from my friends and family on Facebook, some make me laugh, some cry and others just make me go really? that doesn't sound like the person I know (case in point).   The reason I call this entry empathy is from a post of a friend I saw one day on my wall what caught my eye was a responds to the quote and what she posted back to that person who responded, (I love in a most ironic way).

Here is the post

What caught my eye is a friend of hers responds to this post "come on join me (name removed) in this dream".  With a respond back saying "I am (name removed)  I love empathic people!" (in fairness is does say "I love emphatic people" not " I myself am an empathic person") but it leaves one thinking that person is empathetic. 

Unbeknownst to this person I'm about to put them to the test 2 days later and they shall fail.  Said friend has invited me out,  two days before the movie night is to happen I tell her I'm in,  crazy person that I am I feel fine today (at that moment).  The day arrives that we are to go out and I'm walking like a baby just learning to walk, I realize that I can't safely drive (she wanted me to pick her up, so she can have a drink as she knows I can't) or will I be able to walk too far, but maybe my friend if she would be kind enough to pick me up and drop me at the door I could still go.

The call:

Friend: How are you today Heather?

Me: Not doing too great today, I was thinking I would not be able to go but I (friend cuts me off)

Friend: that's okay Heath,  call me or email me at work tomorrow

Me: well  I (friend cuts me off)

Friend:  gotta go "pay as you go plan on the phone" and I don't want to waste my minutes

Friend:  bye
Me: Um okay bye

*Click*

Ouch!  Okay I already feel horrible today and  in a space of 30 seconds, you've shown me you  have no empathy for my situation and to add insult to injury by talking to me I'm wasting your minutes on your pay as you go plan.    

I explained to my husband what just transpired, and he laughed just like he did when I read him her post. And says to me "yep another great example of empathy alright". 

My responds to this post:

Definition of empathy as per Webster Dictionary:

1 the imaginative projection of a subjective state into an object so that the object appears to be infused with it

2:  the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also :  the capacity for this

The lesson here:

 Be careful with how you use words and be sure your actions are in tune with what you say, someone somewhere at any time may put you through the test; are you going to pass or fail?

Physiotherapy....Not Good

I finally get a call for my 1st physio appointment.  I had my choice of which hospital and if I prefer male or a female therapist.
I chose my hospital and tell them I don't have a preference on a male or female as long as they can help me.

By this time I can no longer walk without looking I've been on a bender for two days and I'm starting to have trouble swallowing,  I'm not on any medication for my muscles and I'm in bad shape I'm very good at hiding my pain but I'm losing the battle.

My appointment with Brad is interesting to say the least.  He had me do a few basic stretches which cause my muscles to clamp up.  No one has come right out and said you have SPS we just highly suspect it so I told him that they believe this might be what we are dealing with.  He stops me from stretching any further and says I have never seen muscles do what yours are doing.  He says he is going to look into Stiff Person Syndrome and to come back in a week and he will have a plan in place for me.

Great someone taking an interest I go back the following week, he heats up my back muscles and then has me do a couple of leg and abdomen stretches all is going okay and then all of a sudden it's like an electric shock hitting my body and my muscles are spasming incredibly and the tears begin.  He has me stop immediately and tells me he cannot help me.  As he says physio is to help and he can see this is not helping me at all but making it worse.  He explains the muscles in my upper stomach the ones that hurt the most when they hit;  in between our ribs are muscles and what is happening is they are twisting and trying to move the ribs out of the way to expand out, but because they are coming up to resistance unlike other muscles which do not have obstructions such as ribs  is why I am in tremendous pain, he can feel it and witnessed what they are trying to do.   No wonder I am in such pain when these hit, ribs are not designed to move out the way.  As much as I am in pain I am so grateful to have someone who understands muscles and can explain by observing what is happening and why the pain is so intense!  My physio days may be over but I have an answer to one of my greatest mysteries.

Dealing With My Insuranace Company

For those of us lucky enough to have disability coverage at work it can be a true blessing, we never think we will ever need it and what a waste of money coming off our pay-check but trust me not one of us knows how quickly your life can turn on a dime.  If you work for a company that allows you to opt in or out I suggest you take it, I've worked since I was 15 and never dreamed I would be where I am today and I am so grateful my place of employment has it .

Keep in mind that once you start dealing with the insurance company they are a business and their sole purpose is to make money not to give it away if they can help it.  If you are one of the unfortunate ones who does need it they will try and get you off of it as quick as they can, sometimes they have no choice to wait just like the person dealing with their illness.

I deal with a very nice lady Kelly (company does not matter) she has received all my paperwork, calls me to get a feel for what they are dealing with, I try the best I can to explain what is going on and she keeps tabs on my prognoses and advises me that based on the reports she has received they are going to try and get me into physio as soon as possible and they expect that I will be back at work within a few months.  This is an interesting statement as I received my letter regarding physio and according to said letter the wait list is anywhere from 6 to 8 month, but if you think you can move that along faster then the doctor I've seen, more power to you.  Great I say (I believe this was more said to hear my responds then actual fact).

I wait a week and call her back to ask if she had any luck in moving my physio appointment sooner.  I think I took her a back a bit most people don't contact them asking if they have had luck in moving recovery along, not many but a few people do try to take advantage of being on disability rather then working.  I myself as much as being at home is nice when you can't do basic tasks I'm not exactly having a grand time at home and would like to try and get some of my mobility back.  Sitting or lying all day truly takes the joy out of life after a while no matter what your working mind tells you. And when I say sitting or lying I can only sit for a short time most of my time is spent in the prone position.  Kelly advises me that they have decided to not rush my physio along as they are not sure what they are dealing with.  No worries I tell her I will advise them when I get my call.

Going Out And Enjoying Some Girl Time (which includes spasms to spoil the fun)

I have been off since the end of May, and I have hardly left the house.  I did not realize how sick I truly am getting until I could slow down a bit and not have to  push to get ready for work.  We have a very short summer and I am wasting it being indoors.  It seems every time I have tried going out I end up in spasm and worried if I am on my own that something bad is going to happen so it's safer to stay home.

My girlfriend's daughter is getting married and I'm invited to her shower and her stagette (and of course the wedding).  The day of the shower I don't feel great but it's been so long since I have been out and interacted with people,  besides my husband and my mom I want to go.  Putting on a brave face I drive myself there but by the time I pull up I'm starting to feel that same sickening feeling that my body is going to betray me .  I lasted an hour and left without too many noticing telling myself do not make a scene at her shower, I make it to my car and sit for an hour before I can stop spasming to drive myself home.

The day of the stagette a month later,  I feel great so good I dress up as nice as possible and even put on make-up!  Doesn't sound earth shattering I know but when you are sick it is a huge accomplishment.    Pleasantries from everyone some who are surprised to see me;  I tell them fingers crossed I'm having a great day,  now remember I have still not been diagnosed and I'm still not 100% sure myself.  The party is a passion party, picture it lots of laughs and the wine is flowing they are going to play a game I politely excuse myself when I hear it requires moving and people sitting on each other's laps (don't ask).  I move to the kitchen where I can still observe and enjoy the laughter, which is getting louder and louder  next thing I know I am ready to scream in pain my muscles are going like they have been electrocuted I manage to make it outside and get them to settle down, I am not feeling great but I am determined to get through a day out.  Later we are going for dinner and I could not tell you the last time I went out.  As we are leaving for the restaurant my girlfriend is going to follow me in her car because she is unsure where she is going.  As she waiting for me she beings to beep her horn non-stop to make me hurry ahhhhhh another body spasm is hitting and I am desperate trying to make her realize she needs to stop but she is oblivious finally another person in her car realises something is wrong and comes running.  Another 1/2 of waiting until I can drive.  

Quick dinner with the girls and I am done.  Another mental check in my mind no more going out where loud noises take place.

Back to the neurologist he received the report from the doctor he sent me to and says well we've ruled out everything but Stiff Person Syndrome.  The GAD65 came back and it's normal.  I lost it, I was crying so hard I'm sure everyone in the building could hear me cry.  He looks at me and says Heather what I mean is your case is not typical and I need to send you to another doctor , I believe you.  He was sure it was cramp fasciulation which is why he put me on  1st a dose of gabapentin (which did not help) then carbmazepene (used to treat Cramp Fasculation) and it did not help either, that rules it out (by then my dosage was very high).  You also showed me one of your spasms (my husband finally caught one I had and recorded it) and with explaining the above incidents , I have no choice but to recommend you to another doctor,  someone who has a better background and specializes in rarer muscle disorders than myself. 

And another 3 month wait to see a yet again another doctor.

Am I On The Right Track Yet?

Armed with the information the neurologist has given us I went down directly for blood work before we head home.  One of the test as any person suspected with SPS is GAD 65 it was one on my list as well as many others.  As we head home my husband looks at me and says "see finally a doctor does believe you"  and the best part I have not seen you smile coming home from an appointment in years .  He's right I am smiling. Hope that's all it takes and a doctor who listens and is not judging you by how you look. 

I have 4 months on short term disability after that you need to apply for long term,  feeling good I'm thinking 4 months that's all I need, they will fix whatever is going on to make me function and before you know it I'll be back to work.  The gods again have different plans for me. 

Within the next weeks I receive my letters for all the test, EEG(still needs to be sure it's not seizures), EMG/NCS and an  MRI . 

I'm a little worried now because all these tests are spread out and the last one is close to the end of my 4 months, but I have faith that all will work out.  I also think Dr. Barns will help me go on long term if I need too.  Thank God I asked him at my next appointment because I would need it.

All my test are done everything is coming back normal NO NOT AGAIN!  I had gone home and had looked up all the syndromes he suspected and I swear the closest is SPS.  I asked him about the GAD65 test as that one he did not mention results on.  He looks and says that's strange I don't have that result.  He calls his receptionist to track down that result and she says she doesn't see it.  He says he will look into it and call me later.

 You know that saying if it wasn't for bad luck I'd have no luck at all; the call comes the following day he is upset seems the lab lost my test and I need to redo it.  I found out that, that test needs to be sent to another city, our labs cannot for whatever reason process that test and by the time it was received in Toronto the sample was tainted.  Back to the lab with a not so nice note attached about not to mess this sample up.  4 weeks to wait again for the results. 

The other thing he wants to rule out is the Cramp Fasciulation Syndrome  which requires me to see another doctor that can either rule it in or out.  I go to this appointment nice doctor but when she asks me to bend forward as far as I can I can barely move forward at all.  She says come on try a little harder I tell her sorry that's as far as I can go, like a flash back in time she says wow you are really out of shape and I think that is what your problem is and we need to work on that.  She has me do a few more movements and proclaims, you do not have Cramp Fasciulation you are just a case of someone out of shape and with your extra weight you have a bad back and look how inward in curves you have to really work on fixing that.

 She recommends I go for physiotherapy to help fix my bad back which I found out months later is lordosis (swayback) another sign of SPS and starting today you need to work straightening your posture.   Look she shows me what she wants me to do and I try but the pain is incredible....just work on it she says it will get better. I mention that the neurologist who sent me here thinks it could also be Stiff Person Syndrome,  she looks at me and says "no that is not what your problem is and I will send him a letter" and leaves the room.

Walking Into An Angel's Office

Nothing in the Manitoba  health care system is quick, each province is different and I can only speak of the one I live in.  Having seen my doctor in March I received a letter for the neurologist for my consultation in the later part of May those weeks passed slowly. 

I am getting worse,  before it was all just in my stomach sometimes my legs but by now it's spreading though out my body and I'm still not sure what I am dealing with. 

Elaine has become like my husband is at home always checking on me.  She is watching my decline and it's worry her as much as it is my husband.  By May 1 I had missed a total of 5 weeks of work since the being of January, and I've run out of my sick days and  I only have a few days left in my holiday time .  She looks at me one day and says they need to put you on sick leave.  I know I said so back to the doctor I go.  Elaine bless her comes with me but I tell her just to sit in the waiting room, I'll be okay.

 In I go,  when I explain I am really struggling and can no longer do my job and would really like to go on disability until I get sorted,  my doctor offers to write me a sick note to receive two week off.  I explain that two weeks is not going to help but he says that's all he will give me he does not think I'm sick enough to warrant  going on disability.  Even though we won a victory two months ago I am in a place where I have no fight left in me. Crying leaving the office with a two week note in hand is not what "Elaine the warrior" is going to accept.  She demands to see my doctor out he comes  she says "look at her how can you think she can work like this and how can you think two weeks is going to do any good we are not leaving this office until something is done".  He reluctantly backs down and says fine come back next week with the forms and I will sign them.

The following week a none too happy GP fills out my paper work.  Short term disability in hand I have 4 months to figure this all out. 

Time to walk into an angel's office;  my husband joins me we finally have a consultation with a neurologist.  My appointment is to be 45 minutes we are there for almost an hour and a half.  After hearing my story, and all I've been through I'm not holding out for much hope .

 He says well I think 1st off we are dealing with more than one illness music to my ears my husband and I have been saying that for years.  And with what you are describing I think I have three possibilities for one of your illnesses, your GP thinks you may be having seizures, but I don't see that.  Keep singing to me doctor because for once in many years you are giving me back hope.  We will begin testing as soon as we can. I suspect either a serve case of Cramp Fasciculation Syndrome, Hypokalemic Periodic Paralysis (which he ruled out before I left the office), and I don't think so because it's so rare but I want to rule it out Stiff Person Syndrome.   

Enter Warrior Elaine

Back its January and trying to get back into the swing of work and the same routine. I suffer through the month although my muscles are getting worse I can't miss anymore days at work.  I have an appointment to get the rest of my results in Feb and I can tell him about my newest problem;  I can't move in my sleep , I fall asleep but I keep waking up not just me but my husband because I seem to get locked in place, unable to move my body to another position without really fighting to re-positioning myself.  I'm also having frequent muscle spasms at work.   

Back to the doctor who says listen Heather all your tests are coming back normal I can find nothing wrong with you are you sure what you keep telling me is real or are you making this up.  I can't help you there is nothing wrong.  Keep trying to lose weight and start exercising more please that is what is going to help you.  Okay you are right I gave up right then and there in the office I have been fighting for more years then any person who is sick should.

 I went home that night and went to a very dark place asking God to please take me let me peacefully go to sleep and not see tomorrow, I have no desire if this is what my life is going to be like.  I really won't mind, and those close to me will get over not having me in their lives. 

Okay God you woke me this morning what do you have in store for me? I struggle every morning to shower, dress, drive to work, I'm waking up early and early each morning because doing these basic tasks are killing me and taking longer and longer to do.  Pray the day will go fast because I spend most of it in front of my computer at work hoping my co-workers don't notice the silent tears running down my face and trying to ignore my muscles twisting without help.  I want to go home and rest so I can try and crawl through the next day. Yeah! made it to the weekend where I can rest up and do it all again.  Not a great existence when you are still in your 40's and no one in the medical field can help you and your imaginary symptoms.

Enter warrior Elaine!  Elaine is one of those people who can drive you crazy but you love at the same time.  Elaine and I have worked together since I started at my place of employment,  she is also the one who seems to always be there when my worse attacks hit and will hold me and talk to me to keep me breathing though them .  I went to work feeling very much like a person who has been kicked down one too many times and is staying down now, the world can go on I can't.  It's a very high stress office which I guess is why some of my worse attacks happen there, stress is a big trigger for me. 

When she saw me she knew it was not good news, when I told her what was said she asked me to make another appointment and she was coming with me.  Okay did you hear what I told you my doctor said?  And you want me to go back?  Her voice of reason resonated until I did pick up the phone, I'm surprised they would make an appointment for me but they did, I wasn't banned.  It was a month away.  In that time I was sliding very rapidly and missing more work than being present. On top of the stress of the office I am now worried with all my problems they will find a way to lay me off.

That was the longest month but the day has arrived. In we walk looking like the duo Laurel and Hardy picture it that is us (you know which one I am).  Elaine says to my doctor "enough" my friend here is seriously sick and we are not leaving until something is done.  Then she looks at him and says I know you , turns out they worked at the same place many years ago when he was still an intern. I am not suggesting that this is why he finally believed that something was wrong, but I think it helped to validate that I was not some crazy person.  After she described my spasms and I must say she described it very interesting one of the ways she says it's like I do a pirouette (ballet? me) but what she meant is when they hit it's like I contort my body as if  I'm trying to move away from them, you can see the terrible pain they are causing and there is nothing that will stop it.  

Finally he says hmm seems maybe its  neurological, never thought of that before.  I'll make an appointment for her with a neurologist.

 It's March appointment is coming in May.

 "Elaine the warrior"  to the rescue I can never thank you enough!

We're Going to the Dominican

Well we are on the final week of 2012 and what a wacky year, but it's not quite over yet.  My nephew is getting married in the Dominican and although my husband and I were not going to go my mom talked us into it.  My mom is 82 bless her, she has decided that she would like to take one last trip with all her girls and spouses  (I have six sisters one has passed) and she has asked all of us to go, we don't all live in the same city or province for that matter, how can you say no to an argument of one last trip with her family?  

Off we go the flight is 5 1/2 hours non-stop, having suffered last year a DTV I take the time to buy compression stockings ever tried getting those things on? a healthy person struggles, try someone who has not been able to bend over to put shoes on in years and well you get the picture.  My husband bless him helped me get them on, helps me  get dressed and off we go. 

About two hours into the flight I tell my husband I'm in trouble I can start to feel my muscles twisting and trust me there is no room on this flight.  I manage to get out of my seat to stand for a bit, biting my lip because I can feel the tears starting to swell up in my eyes I'm in pain and even though I have become accustom to it, I don't want to make a scene here on the plane with people I don't know.  Back I sit and rest my head on my husband's shoulder so I can cry and not be noticed.  Finally we are approaching  the airport, my muscles are tender but at least they are no longer twisting. 

The rest of the day in uneventful let's hope the rest of the trip is.

 Next day is pool or ocean day take your pick.  We decide to take pool  option, I love to swim so driving in I go.

 The next day we spent part of it at the beach and then decide to head back to the pool as most of the party we are travelling with is there whooping it up at the swim up bar, while others went on a day trip.  I decide while they are all standing there,  I'm going to have another swim I had done well the day before and thought nothing of it.  I had just pushed off when suddenly it was like my legs turned to lead and suddenly I felt that familiar feeling of my muscles twisting into a twist that isn't a metaphor for the 60's dance craze, I am starting to go under.  Lucky for me I have a husband who is always watching me with all he has witnessed over the years, he rushes to me and gets me out of the pool.  The two bartenders too at the bar saw what happen and came running.  Needless to say they became fast friends that day and everyday would ask Ms. Heather are you okay and are you going to go swimming?  That was it for me no more swimming for the rest of the trip.  Fear has a way of gripping you and anytime over the years that I did something that would cause these strange occurrences I would try and avoid doing that activity at all costs.

A few days later and New Year's Eve is here much lovelier spending New Year's in 30 above weather than 30 below or colder, my mom is tired and wants to go back to her room my husband offers to take her .  As I am standing waiting for him to get back I have one of the staff from the resort pull me onto the dance floor for a dance with careless abandonment I like a fool start to dance....oh oh what is this my legs are failing me and I am dancing with a person who's language is not the same as mine,  I can start to feel myself going into spasm.  Quick think of something to get away I barley break away from his grasp and very ungracefully fall into a chair that was close by (thank god it was empty) if someone had been sitting in they would have been receiving a very ungraceful and unsexy lap dance.  Check no more dancing for me. 

My husband finds me and after sitting with me until I can get back up again, shaking his head at me that I would have done that to myself.  We find the rest of the family and spend the rest of the night with them.

Last day on the island then back to the cold my mind is already starting to mentally prepare my body for the long ride home.  I am stiff but the ride back was not as bad as going.

The wedding was beautiful and I wish my nephew and his new bride the best.  And mom you finally were able to have one last holiday with your girls all together.

Still Having Spasms and My Leg Is Still Stiff

My DTV happened at the beginning of 2012 and seemed to be the start of a slow but steady decline.

My spasms seem to be happening more frequently so much so that I am missing a lot of work, back to new doctor I go.  He suggests that maybe it has something to do with my statins and suggests because I have Metabolic Syndrome let's send you to the Lipid Clinic at one of our hospitals.  Sounds good to me.  And as for still having pain and stiffness in your leg that can sometimes happen to people who have had a DTV and because your body seems to not accept warfarin very well it's not healing itself as fast as it should be, sounds logical to me.  Let's bite another bullet and bring up Cushing's which he also does not think is what is going on but tests my blood levels for cortisol which comes back normal. 

My first appointment at the Lipid Clinic....had to be on one of the worse days for a snow storm to hit by the time I got into there I could barely walk.  It also didn't help that as I left work I had a big disagreement with one of my co-workers (I wish I knew a pattern was developing but I was still a year away), the stress of the argument and the stress of driving on dangerous roads = a person with SPS to go into  spasm. 

I am meeting a team literally; comprising of a cardiologist, a nurse and a dietitian.  The dietitian was pleased  with the progress I was trying to make with the small changes I had made as per my doctors advice.  By the time I saw the nurse I was in absolute pain and started to cry and like déjà vu she said you are suffering from depression I think we should prescribe Prozac (wow slow down you've known me for all of 10 minutes) I tried to explain that I had had an argument and how suddenly my muscles are spasming and that I was not depressed but in extreme pain , she was hard to convince but finally dropped the subject.  Next stop the Cardiologist, not good,  I am crying by this time uncontrollably which is making me feel even worse and all I can think about is how am I going to drive myself home in a raging storm with my body fighting against me.  I finally compose myself enough to explain to him I do not suffer from depression (mind you it's hard to believe with all I have been though in all these years).  And because I suffer from these muscle spasms is there any way it can the statins doing the damage.  (I won't go into details about statins but they are a very nasty drug for some people).    He does not think so and rather than decrease my dosage or give me an alternative drug, he prescribes me a dosage that is 80mg a day and currently I'm taking 40mg.  

I try and believe in the medical system I really do so like a good patient I start taking my higher dosage against my better judgement.  Within two weeks I am in such bad shape, the spasms and pain are non-stop that's it, it had to be the statins, I stop taking them  but I do call the Lipid Clinic to  tell them that there is no way I'm going to take statins anymore as I believe that maybe after researching these drugs that is what is causing my problems.  Reluctantly they put me on an older drug that although doesn't stop my spasms they are not a sever.  I guess my new doctor was right it's statins and they do say that once that happens the damage is irreversible, not great news but at least I know right?    

Another Year Is Coming To An End

2012 was not a great year for me, lots happened and having a body that is fighting with you every step you take, can make even a sane person start to lose their mind.  I have a had a few appointments with my new doctor but no matter what he tests me for, everything comes back normal.  The only saving grace of this relationship is unlike my old doctor he believed me "up to a point" but I'm starting to get the feeling even he is beginning to look at me as a person with mental problems or I'm a hypochondriac.

I think the only thing keeping me sane is my co-workers and friends have witnessed so many of my spasms not to mention my husband, and they know I am not making it up.  They all have watch me go from being perfectly fine to falling down on the floor screaming in pain not to mention witnessing my muscles twist into unnatural positions.  But like bad karma why oh why does this not happen in front of someone in the medical field?  One attack at work one day that was so bad, I guess I blackout from the pain I  woke up with my co-worker cradling me in her arms telling me a ambulance is on the way.  By the time they got there I was fine, they took me anyway to the hospital and I was there for 2 hours; I was first seem by an  intern hearing what happen wanting to run test, and then his supervisor comes in says I'm fine hands me a prescription for T3's and shows me the door. 

I took a cab back to work to get my car to go home.  I also call my husband and tell him not to continue on the road to see me at the hospital they discharged me,  and my co-workers are looking at me like seriously you're back already?  Yep sure am, remember I am just over-weight hypochondriac with mental issues and if this dam weight would leave me I'd be right as rain, I think in jest... but really I just want to sit down and bawl my eyes out.

I try one last attempt with my new Doctor before the year is done, making an appointment the following week after the latest episode.  He decides after I tell him once again I had a sister pass away from Scleroderma (she too had a hard time getting diagnosed as it hit her internally) and I have another sister who has Rheumatoid Arthritis is there any test not done that he could test me for.  I really think I have pushed him to the limit I am walking to the lab with two sheets full of blood work. ...

Most test came back (normal) before the year ends but there were still a few yet to come back.  We are heading for a wedding in the Dominican so I tell him I will make an appointment on my return.  

Stuck In An Elevator

I'm stuck in the elevator, seriously the elevator just stopped and I am alone to top it off I realize I've left my cell phone in the car.  Funny how you can ride an elevator and never notice things such as the only thing to draw attention to the current predicament I am in is a alarm button okay don't panic as a polite person who just wants the day to end (thinking to myself  it serves me right leaving work early today),  I hit the button, a little buzzing sound rings hmmm this is not good wait a minute nope I hear no one.  Okay hit it again a little longer wait no nothing.  About 5 minutes go by okay panic is now setting in its early afternoon I have no idea what floor it stopped on I live on 15 but the lights for the floors are not lighting up.  PANIC I did not stop holding down that button finally I hear a voice I explain that I am stuck on the elevator with no cell phone and could he please call the office to get me help.  

Maintenance  comes and tells me they can't fix it and will have to wait for the elevator company to come but not to panic I will not run out of oxygen, thanks for that.  An hour later I finally hear commotion on the other side,  the door prise open a crack oh, oh I'm stuck between floors the repairman tells me to hold on he is going to try and get the elevator to move down a bit because I am too high to climb out but too far away to jump down.  The doors close again.

 I know people say God only gives you what you can handle but come on now this is like a bad movie script no one should have to play.  I'm in pain and starting to get muscle spasms, unbeknownst to me I'm sending my body silent messages causing my muscles to respond in an unkind way. 

Keep a level head I tell myself this will soon be over,  yep I just felt the elevator move just a little but it moved,  the door opens again but we are not on level ground we are a good few feet from level ground.  The repairmen tell me I have to jump they recommend I sit on the edge and push off and they will be there to help me.  At this point anyone who has SPS will tell you that what they are asking is impossible but remember I am still the crazy hypochondriac who has not been diagnosed.

 Okay I said to myself and try to bend down now in my brain I tell myself how to do it but my body has others plans I fall like a tree in a forest only I have witnesses who are looking at me with a horror on their faces I cannot begin to describe.  Remembering as I fall don't fall out because there is a huge open gap of an elevator shaft beneath you . I land hard on my side trying with all my might to stay within the confines of the little metal box I have been trapped in.  They manage to help me the rest of the way out ask if I'm okay which I think I am (the pride at that point was hurting more than my body)and they proceed to get me another elevator to take me to the floor I need.  By the time I get to my floor my hand is killing me and starting to swell.  But my muscles in my side are hurting me more "couch stat".

 By the next morning my hand is so swollen that hubby drives me a clinic to have it x-ray'd for he fears I've broken a few fingers.   Lucky for me no breaks but very badly sprained.  Not great when you type for a living but could have been worse. 

New General Doctor

My husband calls the College of Physicians  and demands to know why I can't get a new doctor. I had been too many walk-in clinics trying to get a new doctor with no luck.   The College of Physicians were unaware that doctors in our city would not take you as a new patient if you already had a doctor,  once made aware that this was occurring they gave me a list of doctors who are taking new patients and was told any doctor on that list who said the same to me to advise them.  The first two would not, but as luck would have it one of the doctors on the list worked at the same clinic I took my mom to for her doctor and I decided to try my luck with there while I was waiting for her. And as luck would have it when I told him I was no longer satisfied with my current doctor and was looking for a new one, he agreed to take me as a patient....long journey but finally I am getting somewhere, or so I thought.

Very excited my first appointment with a new Doctor.  As with any new relationship I knew I needed  to take this nice and slow but after years of bad experiences with the medical profession, and being turn down as a patient from other doctors, I had high expectations...I hoped he realize what he was in for. 

First things first he wanted to take, a full blood screen of all common blood tests.  Okay I could handle that, he also wanted me to take a glucose test and was very surprised I had never been screened for diabetes especially when I already have many of the factors for Metabolic Syndrome so he was even more puzzled that  this was never looked at.  All test normal (besides high cholesterol which I have been on medication for years) the only other test that came back abnormal the "glucose screen" it came back on the cusp for diabetes. He asked if I would be willing to try and ward it off by exercising more and changing my diet rather than going on medication.  You bet, I explained that I already had a food journal from years of recording which I was to bring to my next appointment. Really no looking at me that I was lying? No accusation of saying I'm not being honest?  A person like you really is keeping a food journal? Self doubt has crept into my conscious long ago.

Next appointment with my journal in hand rather than glancing at it he took a good long look at it and asks if I'm Italian no why?  You love your pasta (which I do) and you really make your own lunches for work?  Yes I do (with a little voice in my head waiting for the comment;  come on you must eat more junk and fast food then you say) well cut out your pasta which quickly converts to sugar, can you also remove bread and cut back on the fruits and juice you digest although it's good for again it converts quickly to sugar.  Make these changes and could you record for me two weeks of blood sugar levels and come back to me.  Um sure but I'm going on a two week cruise you know people don't eat that well on holidays.  Like Santa with a glint in his eye says well I guess this will be a great test for you.  Before I leave I bite the bullet and ask if he can explain why I'm having the muscle spasms .  I also asked why it seemed my left leg was really stiff and I was having trouble bending it lately,  but like always I receive a quizzical look with no explanation when I try and describe them .  He asked that I make an appointment for two days after my return.

 Two weeks later I have returned, my new doctor was very surprised to see my blood sugar stayed almost exactly the same day and night.  He proceeded to tell me to keep up making the changes I am doing and make an appointment in a month. 

This was on Wednesday of returning from my two week holiday.  Sitting at work on Friday late in the afternoon suddenly I felt an incredible pain in my leg, thinking I had just sat too long walk around the office just trying to loosen it up.  By the time I got home that night I could barely walk.  My husband asked if I was okay and I explained to him what was going on.  I tried to ignore it for the rest of the weekend but by the end of day Sunday I could stand it no longer, my husband wanted to take me to the hospital but I said no like always they will make me stay there for hours only to be sent home.  (Over the years I had gone to the hospital many times for spasms with no results so you get to the point of why bother).   I went to bed thinking please stop I need to go to work in the morning.  By the time I woke up the next morning I could not even stand on that leg and finally broke down and allowed my husband to drop me off at the hospital telling him there was no point in him missing work too we already know the outcome I will sit there for hours and then they will send me home with no explanation.

 For once I was wrong I had Deep Vein Thrombosis (DTV) which they believe was from my long plane ride home.  When I finally went back to my doctor he said well we now know what was causing your leg to be stiff. It seemed reasonable explanation to me.  It didn't explain the other spasms but at least I knew why my leg was so stiff.

Medical Shows and the Internet

Ah yes the joy of not only having your career consuming your life, add an ailment/illness to that with a doctor who does not believe you, and your life becomes a time consuming journey between work and you becoming your own doctor.  (note to all of you, most doctors I will learn hate when you become your own advocate and begin the long journey of diagnosing yourself).

 I would pour over health websites and watch medical shows like I was possessed.  Some of my co-workers at work even got in on the act, (even they could not understand what I was going through but knew something was terribly wrong) and trust me I looked at many illnesses and dismissed them because I felt I did not have enough of the symptoms.  And in my defense I did not go running to the doctor every time I thought maybe this is the one, the only time I did was when I finally saw a show on Cushing's after the woman's story on Medical Mysteries both my husband and I looked at each other and went wow that sounds like what I have.  I found a wonderful website about it that actually had a check list of sorts and armed with the information and check list I found back to the doctors I go.  Oh but surprise! He would not even listen to me he told me that although these shows can be very interesting it is not a realistic place to find information.  HUH?  Please tell me you are joking?  Maybe you should start watching them, you may learn something.

Not to be discouraged I went back to that website when I got home and found a listing of Doctors who specialize in Cushing's and took a chance and emailed the only Doctor listed for Canada,  not thinking I would hear from him but when you are sick and no one is listening sometimes you have to take the bull by the horns.  Imagine my surprise when a few days later I did hear back from him he said that although he could not help me because I am out of the province he practice's in, he believed I had just cause to be tested for Cushing's but because he could not help me he gave me a name of an endocrinologist he recommended I see in my city.

 Surly armed with this email by another Doctor my current Doctor would send me a referral, but I think you already know the answer.  My Doctor was very ticked to put it politely that I had done this and said he had already tested me for Cushing's and would be wasting a specialist time as I was fine.  That ended that conversation and any chance of a referral.  This is an instance where I wish we as patients could make our own appointments with specialist but unfortunately without your GP's referral no specialist will see you.  This began the full push to find a new Doctor, believing I had finally found what was wrong with me.  

Am I Losing My Mind

Am I losing my mind?  I have uttered those words for years, this past year I realized that this was not something that was going to go away by itself  nor was it in my mind. I could no longer tell myself if I pushed myself just a little harder and worked my body against whatever this was that was slowing me down and causing me to go into terrible muscle spasms could I work through it on my own nor  was I going to wake up tomorrow and be miraculously cured.

The first time a muscle spasms hit was about in 1996 when suddenly the muscle in my upper left stomach suddenly felt like it wanted to leave my body through the rib cage the pain was so intense that I fell onto my bed screaming in pain, thinking I was about to die when suddenly it stopped, just like that gone, had I moved the wrong way?  Was it my heart? I  went back to doing what I was doing before it happened and was fine for the rest of the day. To be certain I made an appointment with my doctor to do an EKG and Stress Test just to assure myself  it was not my heart and both came back fine.   My doctor did not have an answer for me and said maybe I had just moved the wrong way.

I had this come and go for many months then as quickly as it appeared it went away for two years with nothing.  Guess I was just out of shape and because I had started exercising again my body just had to get use to movement I am getting older I told myself.

Then like in the past, out of the blue I went to shoulder check while driving and bam hit again with the same feeling my muscle in the upper left side of my stomach felt like it was trying to escape through my rib cage.  I pulled over until the feeling past; crying and in terrible pain forgetting where I was heading I just wanted to get home.

Made another appointment with my doctor who again could not explain what was going on.  We went back and forth like this for many years.

Moving forward to 2007 when these muscle spasms started happening almost every week.  I went again to my doctor, he told me I was just overweight and needed to lose weight, I told him I had been trying and that too was bothering me as it seemed no matter how hard I tried nothing was working.  He told me if I would quit eating fast food and took better care of myself I would be fine.  When I explained I don't eat fast food he actually looked at me and said oh come on look at you.  OUCH!  Determined I went home that night and started a food journal everything that went in and out was recorded good and bad.  Once I had a months' worth of recorded food and drink I went back to see him.  When I showed him my journal he said if you're not going to honest I can't help you.  Another OUCH!  I finally convinced him to at least send me for some sort of test because something is going on regardless of my weight.   Reluctantly he did send me for CT scan that came back with "according to him" showed that I had an enlarged liver that because I am not a raging alcoholic is due to my being over- weight and if I didn't do something about it and fast I would be heading for liver failure.   Imagine my state of mind leaving the office my husband was very upset and demanded that I make another appointment with my doctor so he could be present.

Before my next appointment could take place,  I had a terrible attack one night so bad that my husband drove me to the hospital.  Ah the joy of the medical system in Manitoba I sat in the emergency waiting room for 10 hours the first 4 of those having non-stop spasms, by the time I was seen I was no longer having spasms I was just very sore and tired. The doctor who saw me said I think you have Irritable Bowel Syndrome.  Thinking this is what it could be back we went to my regular doctor who again said I don' t think so but because my husband was there and armed with what the ER doctor said he reluctantly made an appointment this time with a Gastroenterologist who did perform an endoscopy and a colonoscopy  and could not find anything wrong but did put me on medication for  Irritable Bowel Syndrome and also gave me Quinine thinking that might help with the muscle spasms. Neither of these medications helped and the spasms seemed to be getting worse. I continued going on with my everyday life and tried to ignore what was going on, everyone else seemed to think there was nothing really wrong so I tired to convince myself the same.

When I could not ignore the spasms anymore, back to my GP I go only to be told maybe it's all in my head and maybe I should go on antidepressants  because I am sitting here crying and obviously nothing is really wrong with me.  He hands me a script for antidepressants and off I go home.  My husband by this time is fed up with the doctor I see I had many other visits with more insults on how he conceived my lifestyle and accusations that I was making up what I was describing what was happening to me.

Trying to take matters into my own hands, I tried every conceivable way to find a new doctor who would take me as a new patient and always received the same responds...you already have a doctor and we are only taking patients who do not have a primary doctor.

How Long Can It Take To Get Diagnosed?

I wish I could say that my case was found within months or even within a few short years but unfortunately my case has taken 17 years to be diagnosed.  That is a long time to keep believing in yourself that something is terribly wrong when the medical professionals that we hold our faith and health in their hands keep dismissing.  On a side note according to reports I have read the average mean time of diagnoses is 7 years, I was 10 years past that mark to being diagnosed.

Why I started writing this was to show others to keep fighting and never stop believing in yourself.  My friends and family so they could have a better understanding of my daily life. And if one person in the medical field reads this and realizes that they need to really listen to their patients that not everyone is a hypochondriac (as I was starting to believe) or that every over weight person's whole health problems are because they are over-weight (go beyond the physical appearance). This thought saddens me the most when I think back to some of the doctor's I have encountered, they are forgetting the oath that they recite in part: to protect all life, to hold in highest regard one's teachers, to recognize one's limitations, and to renounce self-interest in the treatment of patients. Especially my first doctor whom I was a patient for over 20 years.

With the oath taken ever person going into the medical profession should realize not everything is black and white and you cannot possibly know everything there is to know about the human body. You are not GOD although I have met many who think they are, and once in awhile eat just a little bit of humble pie and admit that maybe I don't know what is wrong with you but let's see if we can find someone who might, because I believe you when you say something is wrong.  (This will be my only bad thing I will say towards the medical profession, I give you great credit for the work you do, just remember it never hurts to think outside of the text books you study from when getting your degree.) If all doctors were of that mindset new discoveries good or bad would never be found. 

A short synopsis of Stiff Person Syndrome:

Stiff Person Syndrome (SPS) is a rare disorder, characterized by fluctuating rigidity and repeated episodes of painful muscle spasms.  Spasms may occur randomly or be triggered by a variety of different stimuli including a sudden noise, light physical contact, or situations that cause heightened emotional response such as anxiety, stress or fear producing situations.  One I will add here that applies for me also is passive and action motion.  Muscle spasms are often very painful and usually worsen existing stiffness, spasms can last several minutes, but can occasionally last for hours.

Left untreated, SPS symptoms can progress to cause significant disability, performing daily activities and routines can cause a patient to have a poor quality of life.  Intermittent aching and tightness in the neck, paraspinal and abdominal muscles.  The rigidity spreads slowly  through the proximal muscles and is often asymmetrical.  Over time this can cause difficulty dressing, walking and bending forward.

The exact cause of SPS is unknown, however studies indicate that it may be an autoimmune disorder.  SPS may be associated with other autoimmune disorders, the most common is diabetes.  Less common are inflammation of the thyroid, pernicious anemia (low levels of red blood cells due to the body's inability to absorb vitamin B12 from the gastrointestinal tract) and vitiligo.  Clinical reports indicate that individuals with SPS also have an increased incidence of epilepsy. 

A long, frustrating and at times depressing journey begins in my life. I'm glad I have a great sense of humor and my best friend who became my husband who never gave up on me. I am about to find out how badly I will need both in the years to follow.