The Wandering Years – In search of my disease….

2008- Present

For so long it seems I have sought out the answers to my ailments that when the arrival of a diagnosis came it was as if the plane had finally landed – I had arrived at some far oft destination I sorta knew I was headed to but at the same time it wasn’t the place I thought I would land.

I had walked along my path with so many symptoms that were overlooked – so many doctors who didn’t really care – so many friends I left behind in sadness I feel due to the madness my life was from 2008 to present – maybe sooner – as well as the help from my bff who stood by me and tried to help me best she could but the grounds were shaky due to the meds I was told but in the present I am reminiscent of that person to her again without that med so it wasn’t the med it was me being me. Me living with a lot of things going on and when that happens I tend to batten down the hatches and try to weather out the storm. This time it’s a different storm blowing through but I’ll get to that shortly.

In 2008 I had one of what I would remember as my worst flare-ups that I have had to this point – this was the beginning of a long road that would always seem to go onward without a crossroads or even a bend in its way. My symptoms so you understand were extreme joint and muscle pain, I was anemic and my blood work showed I was RA (the usual False positive bs) – my ANA’s (another positive but to take the test one step further a negative would show so it wasn’t lupus) -

Let me stop to tell you that there are more than one test you can do to see if Lupus is present and thank God my new doc did these tests instead of stopping like all the others did – she’s an angel to me for her perseverance and her expertise not to mention SHE CARES ABOUT HER PATIENTS.

I was always low low low on vitamin d – b foliate was always amiss – sugar always tested high – many factors in my blood work over the course of almost 3 years pointed to something but no one took the proverbial shovel and dug deeper. Instead in the wake of this horrifying attack in 2008 I was diagnosed with Fibromyalgia – if you’ve been reading along you will know that I think this is just to an easy of a scapegoat for docs these days but I think too sometimes it’s true you do have Fibro but it’s not your disease its you’re symptom of a disease that so many accept because they hand you these pretty pills called Lyrica and wow – for the first two weeks you think my gracious I’ve been given a cure; until they stop working – until your vision fails you – until you can’t walk a straight line because you balance is off and people think you’re high as a kite because you talk like you are and I could go on but again I promise you there will be a special entry on Lyrica that will I pray save someone’s life. At first they start you out on a low dose and they work you up to some unimaginable doses for any human – I’m talking like 300 mgs 2 times a day or more? — Imagine a drug they need to start u at 75mgs twice a day and within weeks you’re taking 600mgs or more a day and maybe they added Savella or even narcotics all this to stop the pain – the pain that doesn’t go away only leaves you addicted to a handful of drugs – a horrible life of not being fully functional as you used to be to the point you have to ask for help with some of the simplest tasks like cleaning your house or someone taking you here yonder and there because you’re afraid to drive.  This became my life – I was not only dependent on drugs to get through every day I became dependent upon my bff for more than I wish I ever would have had to because I am Kristy dammit – I used to be a whole person – I didn’t need help with these things and it pisses me off now looking back but I’m thankful I had her at the same time.

As I work to get you up to speed keep in mind I’m on a very strong taper of Prednisone right now so in this time I’ve kept to myself and I imagine it has hurt some people as I again battened down my hatches and went into a self discovery mode. A self reflective and too a place where I can start to start over and pray I do this right – pray I find the Kristy that went missing. She’s not missing anymore she’s coming back to life in spite of her disease, she’s taking back the things that she never wanted to let go of because a misdiagnosis or lack thereof one kept her from. For three years I feel like I was AWOL from life – the world and the happiness of living that every human being deserves to have. Some might think by me saying this that I am slighting how their presence in my life didn’t make me happy but to question that would be taking me and my own ability to function in a world like the rest of you as being “good enough” and it isn’t – yes their presence made things easier but happiness? – No I haven’t know that word for many years for a lot of reasons but especially because I was hurting so deeply inside physically that I couldn’t live a normal life for my kids – for me – for my friends that I let slip through the cracks because anyone who has an auto-immune disease or even if it’s Fibromyalgia will tell you they break a lot of promises. They don’t mean to – they don’t mean to shut you out or turn you down for lunches – coffee or just visiting time it’s how they feel inside that dictates whether or not they can make it and 9 times probably more like 9.9 times out of 10 they don’t come out of their self preservation they create in their home in their own little world where it’s safe to them.

You probably can’t fathom how someone can let a disease take over so much of their life that it comes to them living in a cocoon and not living but with a ghost haunting your body hurting you every time you try to do something ie..say I decided okay I’ll go riding on my motorcycle today for a couple of hours because I miss it and I miss my friends I ride with – well for that I pay duly. I will crash and burn for a day or two for a few hours fun. Pretty steep price to pay when you already live in pain each day but because you chose two or three hours of fun the pain increases ten fold and you pass out to the world for anywhere from a day or two of constant need for sleep. Your body needs repair and it doesn’t care what you want. You think to yourself how could going out to lunch or having a cup of coffee hurt you. Well it per say doesn’t – you will find an element of the life of someone who lives with an auto-immune disease or Fibro (I will keep giving credit to those who are living with Fibro as a disease because I won’t forget where I came from – my beliefs about Fibro set aside does not change what people who have Fibro are dealing with and are living with no more than it does those of us who are finally given a real name that as I said can cause Fibro in some people.)

However; when you are living with such a disease it’s embarrassing to go out with your friends and have to pretend you’re enjoying yourself when in truth you don’t because the pain is more overwhelming than the comfort – you will also suffer a great deal of depression and anxiety about yourself and what you life has become and we all know depressive people are not social bugs – if you’re like me I don’t even admit to being depressed though now in my reflective times that I have consciously taken the time to have to myself I see how depressed I truly was but I also have PTSD Panic Disorder from having my heart attack back when I was 36 years old so I was both but only have I been medicated for my panic disorder. SSRI’s and me do not get along to the point it took them 2 years to get my panic in check – I’m the 2 out of every 10 people who SSRI’s don’t work right for but against. These are the only drugs that you can take for being depressed pretty much but hey I wasn’t depressed I was bummed about things but to me hell I was fighting the pain so much that I didn’t have time to get depressed. Bullshit! I was and probably still am somewhat depressed even though I have a diagnosis – keep in mind it hasn’t all had a great deal of time to sink in and I don’t know when it will or how it will affect me when it does but I think and hope that by staying positive – by sharing this part of my life for others and for myself as a way of self-therapy I will not remain depressed as much as I will become that long lost AWOL Kristy even I miss. I think it’s possible. My panic disorder I’m stuck with pretty much for life; it’s not different than a veteran coming home from war; a rape victim or someone who’s just had something that horrified them so terribly that it will always be there just under the surface and the triggers that cause it will remain and sometimes it doesn’t even take a “trigger” to be pulled for your panic to act up.

Finally though I set my heels in and decided something was not right – somewhere, somehow, some way I was going to get to the bottom of this and in two years time I went to 15 doctors – 16 was the charm for me but when I walked in her office that day I told her she was the last place I was going to stop – this was the end of the line for me – if she couldn’t find the answer I was going to give up. She responded “No pressure there” but I was so tired of doctors – so tired of the madness – so tired of being called nuts – so tried of drugs – so tired of hurting and no one to fix the problem only people with pills as if to hide the ugly monster that lived inside me instead of facing him with swords drawn. My army was ready but I couldn’t find an alliance that would join in with me and help me and this dragon is a big one.

The Wolf I adopted for my book tour as a part of the charities FromOneTwoAnother 2011-2012 Tour will Sponsor. I did this before I knew I had Lupus <3 www.wildspiritwolfsanctuary.org

I find it ironic that Lupus carries with it the definition of a disease but it also carries with it a creature in life; the wolf – The gray wolf or grey wolf (Canis lupus), often known simply as the wolf, is the largest wild member of the Canidae family. So now I have in my little world of my imagination a wolf who runs with me but it’s not a bad thing as I’ve always loved wolves and a wolf by nature is a companion for life – so now me and my wolf well I like the way of thinking that I have a companion my spirit keeper (I’m part Native American so the wolf carries a great significance in my life and spirituality already) who is going to help me through the bad times and help me attain more good times.

I know one thing though my road is just beginning – its a new start – a new horizon on the fight ahead – some days will be good some bad but what is going to happen now in my life is Kristy is going to come back to life. The Kristy who is a fighter by nature – a very fun loving, carefree – laid back person who didn’t rely on anyone beacause she could take care of herself and her children and now I hope to be able to be the daughter to my mother who can help her as well in her sickness. I haven’t been able to do that, her and I both ailing (My mother has COPD Emphysema – Final Stages) she worse than me in some ways but me as bad off as her in some ways both of us trying to coexist in a world where neither of us are fit to care for the other. I do pray now as I go through these trying times of finding the right meds for me and my wolf to succeed and make more good days than bad and change the way life has been for so long that it will seem like a new life – I do pray in that respect I can be helpful to my mother as I’ve not been able to be before. That to me would be a great gift. Mind you I don’t live in a fantasy world thinking that everything will be peachy keen marvelous and I don’t need anyone in my life to help me through but I know I can live with this disease – I can now gather up all the remnants of so many years of unknowns and place them in a great fire – with knowledge comes power – power to be the person you want to be – power to be positive in spite of any negativity that tries to encroach on your well being and the power to stand up against the mighty dragon and tell him you’re not going to back down – you’re here for the long haul.

For anyone who reads these entries please stay positive – find you’re inner peace if you can through your own belief systems and spirituality – know there are others out there who are just like you – they’ve walked your mile and are still here with us because they didn’t let this dragon slay them instead they didn’t give way to what could of been a deep sadness and feeling of defeat – I call them shadow dancers – some days the sun shines on you when you’re walking and your shadow is ahead of you these are the people who have walked your mile; they know, they understand and they care. Sometimes the sun’s rays change and they walk beside you or behind you and those are the days they are right there with you holding your hand in spirit – or walking beside you because maybe they need to borrow from you a bit of a positive vibe but on the days they walk behind you they may be carrying you through a hard time with your disease or they may be even following you because you chose to face this with enough positivity that you can help them when sometimes and everyone will sometimes fall off the positive side and need their shadow dancer to help them through. You are not alone always remember that and keep in mind too if you like, Lupus is also a wolf a companion for life who will always be with you to help you in your fight.

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