Friday, 28 September 2012

Well Mrs R, it seems you have a bad case of FUBAR.

Okay, so my neurologist didn't exactly use the word, FUBAR. She may have started our appointment by saying I was "special", but as any seasoned chronic illness patient knows, that is doctor speak for FUBAR. You see, out of options A (write your will now), B (don't stress, you've got a good 10 or 20 yrs of painful, untreatable, deterioration to write your will), and C (we have no fricken idea what you have, you weirdarse freak), it appears that I am a big fat C.

Don't get me wrong. I'm pretty happy to finally rule out some of the particularly nasty things which have been hanging over my head as serious contenders for a cause. Lets face it, avoiding a painful death any time soon features pretty high on the win side of the ledger. So a big YAY to no death. And a big old YAY to no long lingering nastiness whilst I'm at it. But a big loud and moist raspberry to no answers.

My neurologist is lovely. She's a top specialist in the country and I know she tried her best to work out what the hell is going on with this stupid body of mine. The testing she organised for me in hospital was very thorough and managed to rule out many hard to pronounce and scary diagnoses. But being told that you're one of a handful of her patients who will most likely never have a name or known cause for their illness, is a rather big blow. Turns out knowing that my current state of health was likely permanent, is a lot different to having it finally confirmed.

The one thing I know from my hospital stay is that I have seen all the top doctors. This was further confirmed by the epileptologist who brought his students in to interview me. As I listed off the testing I've had done and the doctors I've seen even prior to my stay, he was in awe. It's not often that a patient is so thoroughly investigated, being 'interesting' has some perks. So at least I know I've done all that I can do to find some answers. But conversely it means there is no where else to go. And frankly, that's a little disheartening.

I am left with a complex collection of weird unexplainable symptoms. Apparently, it's clear I have severe autonomic dysfunction, that my hypothalamus and pituitary are no longer working properly, that I have either a primary or secondary enteric dysautonomia, progressing small fibre neuropathy, some of my axonal sheaths are thinning, the list goes on and on. My body is clearly breaking, but none of that gives me a definitive diagnosis as to why. And with no definitive diagnosis, I have no treatment plan past symptom management. A cure is no longer a realistic option. I have no idea what comes next, though with six years of consistent progression it's a pretty safe bet that it'll continue to progress. But most concerning for me, is the fact that I don't know if this is something I can pass on to my kids.

I know I have a team of doctors who are all the top in their fields, who are willing to go above and beyond, are willing to investigate anything I suggest, and are equally frustrated. Doctors who take me seriously and work collaboratively despite all the obstacles my contrary body provides them. And thanks to that one fact, I've ticked all the testing/hypothesis boxes off my list. I know in this respect I am far luckier than many other patients. I now also know that even with all this it is still no guarantee of answers, or solutions.

Since yesterday I have alternated between, tears, anger, and numbness. The stress before yesterday's appointment, thanks to all the possible "what ifs" that kept playing through my mind, has taken a toll. Add in that I am in the midst of a bad run of insomnia and my coping reserves are a bit lacking. A long soak in the bath last night and just sitting in my garden today, feeling the earth under my feet has helped. I'm no where near finished processing what it all means. I'm at a crossroads. I've done all I can and I have to make a choice to accept that what I was told is the simple truth. That it is what it is, no matter how much I wish it were otherwise. Sometimes, shit just happens. 

As I sit here tonight I realise that my ideas of hope are evolving. Where once I hoped for a cure, now I hope for happiness and acceptance. And whilst the recency of this news means I am still an emotional basketcase as I sort through all the implications for my life and that of my family, I do believe that happiness is a choice you can make regardless of your circumstances. And if this is as good as it gets I will damn well make the most of it. Besides, happiness really is the best way to give my body the middle finger.

In the words of Peggy Lee,


" Is that all there is, is that all there is
If that's all there is my friends, then let's keep dancing
Let's break out the booze and have a ball
If that's all there is "


Michelle :)

Pretty sure this will be playing rather loudly on loop for a while.

25 comments:

  1. Dang. That sucks Michelle! But it's kind of how I've always looked at this disease. There is no cure so make the best of a crummy situation. I'd say I'm sorry for the results you got, and I am, but I know from experience that doesn't really help. All I can do is understand. And pray. I know you aren't the religious type or whatever, but I believe in prayer and that I can do for you even from across the globe. So praying for you to find strength, peace, and happiness to get through this awful time for you. Hugs from AL.

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    1. Logically I've known for a long time that a 'cure' wasn't going to be part of my experience, but I think this appointment was the first time it really hit me that it was real. I know you understand it only too well and I appreciate your friendship and your prayers xx

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  2. You never fail to move me to tears. No small task. Whatever "it" is, I'm sure once you collect yourself- to whichever point you need to be collected- you will handle it, as always, with grace & bawdy humor. I hope you never tire of being an inspiration, despite the level of "specialness" that's been handed to you. Gratitude to you....from
    - Gangster USA

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    1. Thanks Gangster (though sorry about the tears). I figure I need to wallow for a while and work my way through it. That way when I come out the other side I can embrace life and all it offers. I'm pretty sure there are more than enough fart jokes in my future ;)

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  3. Not the news I'd hoped to hear for you Michelle....but you handle and write about everything with grace and dignity (as usual), but I can;t imagine what you are going through - so frustrating to say the least! Will be thinking about you and sending big long distance hugs and happy thoughts. xoxoxox

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    1. Thanks babe. It's not the news I was hoping for either, though part of me was realistic enough to know that it was an option. Trying to wrap my head around the uncertainty it all leaves but I'm going to give myself time and not rush it. I know I'm not alone in the 'special' basket and have had some truly lovely emails from other 'special' folk all around the globe. xx

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  4. I am truly sorry to hear they did not come up with a answer for you. I am at that crossroad right now waiting on results (answers) if there are any. I have had the tilt test and such and they have given me a label as to what is going on autonomic neuropathy and POTS but what is causing it is where the test come into play. Ten years into this situation and I feel like I have been beat up but I have not gotten to the point of giving up UNTIL I get these results. I have already told my family this is it. Once we get these results if there are no answers as to why that is it. I will just continue on this unknown journey as to where it is going to lead me, I have no clue but I refuse to spend anymore energy on attempting to find out. Actually now this last go around the other day when things got really bad. I found myself screaming outloud "GO AHEAD GIVE ME YOUR BEST SHOT" and best shot it indeed did. By the time things settled down, I was worn out but then it dawned on me and I realized this monster does not control me I control it. It will want you to believe that it controls you and in a sense it does to a certain degree and can do horrid things make one feel bad but the bottom line is afterwards I laugh at it, I refuse to fear it any longer. I lived in fear for years until I was seen three weeks ago and finally got some answers. I feared something I did not know, now at least even if it does not have a name for the cause yet. I fear it no more. I took back control. You truly are an inspiration to others you just are not aware how much. Just know there are so many people out here that are so very grateful for your sharing with us your life and your thoughts. You certainly brought laughter into my life where most times there is NONE. Thank you ever so much. Big HUGS to you xoxoxoxoxo

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    1. Thank you for your lovely comment Terri. I'm sorry you're in the same boat and I get what you're saying about it not controlling you. That is a choice we all have to make if we're going to survive all this. Happiness is very much the best revenge and I do think that too is a choice you can make irrespective of your lot in life. And that happiness is something I wish for all of us on this or similar journeys. xx

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  5. That just freaking sucks, Michelle. But, what you are feeling is normal. You are grieving for the person you used to be and wanted to be. But, this is who you are now and you have done an extraordinary amount of work for Dysautonomia patients worldwide. I am PROUD of you and know you will continue to laugh, cry and fight through this madness. Continue to write and express your feelings with Bob, because you definitely are not alone.

    Much love,
    Erika in Florida

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    1. Thank you so much Erika, now I'm getting all teary reading your and everyone else's comments. If I can help even one person through the blog that makes it all worth it. It's a scary and lonely disorder at times and I am reminded at times like these of all the wonderful people in our community who give me support and strength each day.xx

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  6. As another woman in a similar point in my diagnostic journey can I make a suggestion? Cranio-spinal instability? (When it happens all by itself to 'normal' people it's called chiari but it happens alot different in ehlers-danlos syndrome.. have these been looked at as maybes?) All the best, Emma x

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    1. Thanks for the tip Emma. Have ruled that one out unfortunately, but good for others who may be reading to know about. My doctors have been great in testing me for a wide variety of things, more than most patients seem to get tested for. Pity it didn't give me a definitive answer :( I do wish all patients could have such proactive doctors.

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  7. Michelle, I have only just found your beautiful blog... and all of the hilarious ways you find to laugh at the outrageous realities of your daily struggle. I feel like I have found YOU. And in the process found my own thoughts; on your pages, in your face, in all the creative ways you find to express something I always have thought no one will understand. It's true that you are an inspiration! That is an extraordinary thing! It doesn't help you to see this 'full stop' as a capital letter. But I know I am not the only one out here who thinks that in spite of all your wonky crazy body weirdness, you are a SERIOUSLY COOL PERSON. Sending you sunshine thoughts, I hope something cracks the gloom you are feeling, somehow. Thank you for sharing today. Rach

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    1. Welcome Rach and thank you for such a lovely comment. I'll take those sunshine thoughts today. :)

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  8. Very sorry to hear this Michelle, having a definitive diagnosis definitely makes things easier to deal with and allows you to have a plan of treatment. It is a fear of most of us with chronic illness I suppose to never truly understand the reason why we feel the crap way we do! I had really hoped for a positive outcome for you after you endured all the testing. I am thinking of you and your family.

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    1. Thanks Kathleen. You're right a definitive diagnosis does make things easier to deal with and at least can give you an outline of a treatment plan, even if the outcome isn't great. I think I just need to wrap my head around it all and move on. It is what it is and there's not a lot I can do to change that. Time in my garden has been good to just vague out and soak in the sunshine. I think I need to do that for a few days xx

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  9. I think that besides the tears I shed when your experiences hit so close to home and the long distance hugs I send your way (with that "I understand" back rubbing thrown in) all I can say is that we are here with you. Understanding, emotional, basket-cases with our arses and purple feet up in the air! I will certainly keep you in my thoughts. *big hugs*
    -P

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    1. Knowing all the support I have, means more than I can ever say, Portia. It's a tight knit community and a supportive one in good times and bad and for that I am really thankful. :)

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  10. So glad it wasn't option A. but understand it would be nice to have something more concrete to work with. Last year I had a point where my dystonia was progressing so much I thought I might have Parkinsons or something along those lines but then I realised no mater what name they give me, I am still here living in this body. I am still going to have to cope with its limitations etc. Its defnitely learning how to do it in such a way that the middlefinger is directed at it. You might have some of me - but you can't have all of me. x

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    1. So true Amity. I think the old control freak part of me wanted an answer so I'd have a starting point on which I could base things but the reality is name or no name I still have a body that is slowly deteriorating. I must admit going to the ballet on the weekend and getting all dressed up, despite how sick I was and the stress of the previous week, did feel good. It was a case of giving my body the middle-finger whilst wearing a fancy frock and heels :)

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  11. Michelle,

    I am happy for you that you didn't receive a nasty diagnosis - but sad and frustrated for you that you are left standing in the dark! Mysterious, disabling neuropathies are no fun! Have you considered an autoimmune disease at the culprit? Even if they have not been able to identify certain antibodies that could cause the problem doesn't mean that they may not exist! For POTS for example researchers are just starting to identify auto-antibodies... and I believe some have also been identified against neurons or neuronic receptors. Would your doctor be willing to try a treatment for this - even though you have not tested positive for an autoimmnue problem, per se? Have been thinking these thoughts for myself lately, as a fellow dysautonomia patient (POTS, NCS, mysterious autonomic neuropathy!)

    Anyhow I clearly feel your pain. I am also frustrated by the lack of answers out there. Since it doesn't appear to be lucrative at this moment to chase down more doctors, perhaps you should focus on the choice of happiness, as you mentioned. I am also a keen believer in the powers of meditation and positive thinking. They are likely not curative, but at least they could help with acceptance, mood and would provide a more positive energy in a difficult time. Time outdoors in nature is also food for the soul.

    By the way, did you know that FUBAR is also a movie about headbangers in Canada? May be good for a laugh on a depressive day! And I LOVE your choice of closing videos! Like she says, just keep on dancing! Not much else you can do in the moment.

    Sending positive vibes your way - I hope you can find some clarity within the next while. Not easy to do, but I think it is absolutely necessary for our situations. Stay strong!

    -Carrie

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    1. Hey Carrie, I was checked for various AIs when I was in hospital and nothing came back as pointing towards anything. My cardio is actually doing research on AI and POTS so she's pretty on the ball with it all. Here IVIG is hard to get unless you meet very specific criteria so it's not like it's even an option as a potential trial :( I've had IVIG and Octreotide both suggested by my team only problem is I'd have more of a chance of winning the lottery than getting access to them.

      Now I have to go and find that movie, Carrie. :)

      Thanks for the positive vibes it means a lot xx

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  12. I accidentally found your blog via Pinterest tonight. I've spent the past hour or so reading older posts and then clicked over to your latest post. As I have read your posts, I found myself smiling, laughing, empathizing and even shed a few tears. I cannot explain my feelings as reading and felt like someone else in this world understands my life and frustrations of no answers, no cures, nothing. Although I would not wish this on anyone else, it is comforting to know that I am not alone. There is someone else that understands to some degree the struggle I have each and every day to just survive.
    Thank you for your bravery and honesty in sharing your life struggles. It is comforting to know tht someone else understands and has figured out how to live with a similar symptoms that I have. I will definitely be following your blog. Prayers are being sent up for your peace and comfort as ou too try to cope and come to an acceptance or whatever peaceful place we are supposed to find while dealing with autonomic dysfunction and all the other fun that comes with it. Thank you. I know I was led to your blog.

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    1. Welcome Jerlyn, glad you found your way here. It's always nice to find someone else who understands and the one thing I've found writing the blog is that there are many of us out there, far more than we often realise. I know the first time I found someone else who said "me too" it was such a relief. xx

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  13. Hi Michelle, thanks for sharing this and letting all of us 'followers' know how you went. I'm sure I wasn't the only one hoping that some brilliant doctor looked at all your tests and had an amazing light bulb moment (like in a cartoon) and figured it all out. I wish I could think of something to say that could help but instead I am pasting this link to a Johnny Depp photo montage. http://www.youtube.com/watch?v=-_yNdFXEjws&feature=related

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx