IN beginning my journal entries of my life “living” with Lupus I must first I suppose give you some background as to how I finally after over half of my life searching received what I felt like was the best gift God had given me in such a very long time. The road was so very long and most of the time I didn’t even know I was walking along it.

WHEN I was 14 years old I began having joint pains that would literally put me in bed because sleeping was the only way you could forget the pain. My mother was a very good mother and she took me to several doctors trying to find answers only to hear that “it’s growing pains or she has arthritis from playing softball”. Looking back telling a parent your child has arthritis should not have been something doctors looked upon lightly but keep in mind too I’m now 41 years old and not as much is known about Lupus as it is today and I’m sure doctors weren’t as astute in following through with a kid complaining about her knees hurting as they may be today. Although Rheumatoid Arthritis was known about so you would have at least thought they would have checked for that.

BY time I was 17-18 the joint and bone pain had moved further along so from my knees to my ankles hurt a great deal. Again I went to the doctors to hear the same things – no blood tests ever taken or further investigation. At 18 my first daughter was born and after her birth I began to feel the pain from my lower back down – again this pain so unbearable 4 motrin and bed was all that would take it away.

MEANWHILE incidentally without knowing anything about Lupus or any other diseases at this point other than the major ones everyone knows about – I look back now and remember how sensitive to light I was – how I couldn’t like normal people go outside even on an overcast day without sunglasses and if I went to the beach I would always burn very easily – I had suffered sun poisoning and “sun rashes” anytime I spent too much time playing in the sun but hey we’re kids – we play and play I did though I didn’t know I was playing with a literal fire beyond the usual UV rays that back in that time didn’t seem to be as stringent on the body as they are nowadays.

BY the age of 23 I had my second child – but in between having him and my first,  I had a two miscarriages. You think to yourself that this happens to a lot of women and it does but when you put together all these many pieces of a puzzle later across time you learn a lot of these things tend to be related – related to Lupus. I suffered a very tiring and hurtful pregnancy because of the bone and joint pain I had from my lower back down and I have also been a “napper” so those increased as well too. Being tired a lot is one of Lupus’s favorite ways of letting you know it controls you – you don’t control it. I still to this day have what I call “Crash and Burn days”. Those are days where my body shuts down and I can sleep anywhere from 18-48 hours off and on with little waking hours here and there…ie get up to make sure you feed your kids or take your pain pills and other meds I have to take from some other medical issues I have and will share with you as we come upon them.

THIS is probably the most embarrassing aspect of all the side effects of Lupus that I will in this point in time feel like I share with you but after the birth of my son my teeth began to rapidly deteriorate. I had went to the dentist faithfully since my first teeth had come in and had always continued to visit the dentist all my life – I had always been the kid in our family with cavities but by the age of 24 my teeth were literally crumbling in my mouth. By 25 I was wearing dentures. This has been the lowest point of my own vanity I guess you would say in my life to be 25 years old with dentures. Of course I spent a lot of money to make sure I didn’t look like your grandma but at the same time I knew they weren’t real and sorta like that movie the kids love so much “Shrek” – I felt very much like the young in my eyes somewhat pretty girl Shrek fell in love with who at night turned into the same Ogre he was. I still to this day am very self conscious of this part of my self and my own looks.

IRONICALLY, I find out that Lupus can cause the nerves to your teeth to be damaged due to the inflammation that is constant and on going in your body as the white blood cells whom a friend of mine name Sue Dent who has experienced and talked about issues of her daughter’s diagnosis openly with MS once described these auto-immune disease white blood cells as Outlaw Blood Cells. It’s like watching Gunsmoke or some western of any time really there’s one outlaw who comes to town or a group of them and shoot up the town – even the good people get caught in the cross fire and in Lupus as in any other auto-immune disease this outlaw is present and never gets shot down by Matt Dillon – they may get run out of town for a spell but they always come back. I thank Sue for that description because to me its probably the most natural layman’s term way of describing to you what an auto-immune disease is all about – an Outlaw shooting up your body’s good folk – using meds to run it out of town or into remission if you are lucky and then praying it stays away for as long as possible.

SO, now I’m left to wonder – did Lupus steal my teeth? Who knows for certain but again if you put this piece of the puzzle onto the big table we’re preparing our puzzle on you see it fits somewhere esp for a 25 year old. I live in flares – flares are times when you get in pain for varying lengths of time without anything strong enough to ease the pain. Your best friend is an electric blanket, a handful of motrin and your bed for sleep. Through the passing years too the naps were a must – sleep was erratic – sometimes I could sleep sometimes I couldn’t – sleep is a vicious cycle in my world and one where sometimes I’m right side up on the clock but most time upside down on the clock.

On June 11, 2006, I had a MASSIVE HEART ATTACK. I hadn’t had any issues with my heart prior – I didn’t even know what was happening to me when it was happening – it was so massive that 5 min time would have made the difference of me talking to you now or you never knowing I existed unless you knew me before. With this heart attack on June 13, 2006 – and yes you remember these days as well as you remember the birth of your children I had double by-pass surgery. Speaking of which I had at this point 3 children – another miscarriage in between the two and each pregnancy became more and more dangerous for me and my babies. The came earlier each time and by time my youngest came she was rushed to ICU because my body basically rejected my babes at its own intervals. Does Lupus have anything to do with the births of my children being so brutal on all of us – I don’t know. It’s just another piece of the puzzle I bring to the table. As for the heart attack – the answer is YES, most likely LUPUS created this horrifying event.

AFTER my heart attack and double bypass my heath deteriorated rapidly – I suffered from PTSD Panic Disorder from having the heart attack and of course doctors figured pop her on the cholesterol meds – well let me tell you how Lupus works – a) it can cause your blood vessels/arteries of any kind to be shrunk through inflammation that surrounds them and b) it can also affect your cholesterol levels along with sugar levels. Lupus is pretty much a monster who can do whatever he/she wants and cause havoc in any place it wants to.I was put on Lipitor and in November 2006 I began to have pain in all my joints and muscles – I stayed in excruciating pain so they changed me from that to Crestor – the same results would ensue and couldn’t even be corrected by taking the dosage down to one every other day. Lupus will also do a number on these meds by way of not making them as effective on you as they are on others. I no longer take my cholesterol meds but keep in mind things may change as we go through this journey because I am only shy of two weeks with a name for my disease – the nameless child now may be able to find a way to keep her body in tact and her heart healthy since she has a name – a purpose – and a promise.

In March of 2008 I had one of the worst flare ups of pain in all my joints and muscles that I went to my doctor begging for help – I got LYRICA – the most evil and dangerous drug on the market today and yes I know many of you may take it and do well with it but do your research I beg you – this drug is lethal and can literally leave your life in ruins if it doesn’t react well to your body – and do not be deceived that bc it is working well with your body that it isn’t doing damage somewhere.  I will do a whole post on this medicine by itself due to some issues I’m dealing with from taking it and the need for awareness to others contemplating – taking or taking and having some serious issues due to it.  I was diagnosed with FIBROMYALGIA – to me a poppycock catch all or “new age” disease that is not a disease but a side effect of either medications or other serious illnesses such as Lupus.

I went through all their treatments – but never fully believing what they were telling me was rational until I sit here now in front of you addicted to Percocet 10/325 4/day and Oxycontin 20mg XL 2/day; for three years on the percocets. How fun to live your life addicted without choice. It’s not.

I’m very tired right now so I must end this post and too I’m sure you could use a break as well but my next post will cover the years from 2008-present. Right now just so you know I’m on a very strong and aggressive treatment of Prednisone – this is a tough treatment in itself but I will share with you it’s benefits/quirks and even some of the down side of it but it’s saving my life right now and working on kicking the Outlaw out of town – I go back to my doctor on Valentines Day to find out what’s next. I’ll write soon but bear with me as I’m up and down in my pain and in my overall feeling of well being so I expect my posts will follow suit.

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