Journal

My pain has gotten so bad lately that I have had to give up driving. My right hip is just burning with pain & some days I've had to stay home from work because I cannot sit with the bad hip or stand with the bad knee, all I could do was lay in bed. I'd take my max dose of pain meds & sometimes that didn't even work so I took my sleeping pill so I could just sleep through the day & hope that I would wake without as much pain. I have to have my TENS unit on all day on my knee to be able to work.  I push, push, push myself to get through the day. Especially with not only having my full-time job but trying to get my jewelry business going too.

I am just having it set in a bit that I will be getting a neurostimulator implant.  I'm scared because it's another surgey. I'm also concerned because in the info I have it says it's not recommended for pregnant women (not that I am planning that anytime soon since I don't even have a boyfriend or any social life now to even have that in the near future) That's something I've always wanted, but since the pain I've almost given that dream up too along with all my other dreams.  It seems to me that everyone else that is going through this sort of thing are married so they have that support & many already have kids so it doesn't seem to be that much of a concern for them.  Not only that but they have a spouse to help them financially (esp. with health insurance) unlike me who has to work full time rain or shine pushing myself to tears, grinding my teeth as I smile at co-workers pretending nothing is wrong. I love my job but right now I really wish I could take some time off to deal with this emotionally & physically.  I feel like I'll just break some days from the stress alone! I wish I could get some people to feel what I go through each day just for a short time. I don't want sympathy, I want understanding.

So I'm praying this will finally be the answer so I can finally start a "normal" life... 

Ok well I decided that I would just go ahead and write this all out because I get asked this all the time and if I do this then I can just refer people to this... I've been told I should write a book about my life... I say that it would be a tragic comedy though...plus I don't know how it ends lol... I think it seems more like a soapopera than a real life at times... I wish it were but it's not.
Anyway, most people now days when they meet me want to know one thing what happened (thiking that I sprained my leg or broke it or something) It is a long complicated story how I ended up this way... And I mean that in so many ways... We all realize how one event leads to so many other things in our life... I've heard the saying "God works in mysterious ways" and "God has a plan for everyone" so many times as people have applied it to me trying to justify and explain what has happened... All I can say is that I have learned so much in the last several years... I've been told I almost know too much for my age; I'm too young to endure such things... I just see it as I'm now able to enjoy life a whole lot more than most my age.

I have a Batchler's degree in Plant and Soil Science in which I worked very hard to get... It too me 7 years in fact to get it because I worked my way through college... I had started out in community college taking floral design but discovered I loved the greenhouse more at the time... So I switched majors... I worked in a greenhouse during my school breaks among other jobs to pay for just about everything.

I was a fairly active woman... I liked to go for walks, swim, bike, camp, garden, and lots of other outdoor activities... I was in pretty good shape and had just started taking dance classes which I had always wanted to learn... this was in my last year at SIU... One day I thought I had sprained my knee doing something, carrying boxes up to my apartment or something... After a week or so the pain didn't go away (this was my right knee by the way) so I went to the doctor.

They looked at it and took x-rays of both knees... My knee caps were at an angle, which actually can happen to young woman because of the wider hips... My doctor sent me to a physical therapist... Weeks of that with no improvement... I was referred to an Orthopedic doctor... It was decided to do a surgery called a lateral release on both knees... It was thought my right knee was the bad one, it was the one that had the pain to start with anyway... By the way the doctor couldn't believe I hadn't been in pain years before this when he saw the x-rays and told me I must have a high tolerance to pain.

I had my right knee surgery done Jan 2000... My left knee March of 2000... It was discovered my left knee was the really bad one... My right knee had been compensating for the left one for years evidently... I was told there was a 50-50 chance that I would need surgery again in the future and that my chosen career may make it worse.

I had worked so very hard for so many years I wasn't about to give up now... i did extensive physical therapy and continued with my schooling all through this... I graduated with honors, cum laude, in December of 2000 from SIU.

I found a job in the spring at a greenhouse near my hometown up north... I worked there till I started to get sick in the summer mysteriously... After missing weeks of work and losing almost 20 lbs in a month I was diagnosed with IBS... The medication my doctor put me on at the time made me sensitive to the heat and I could pass out... I was forced to leave the greenhouse work that July.

After working a year as a reading teacher's aide for K-2 grades I moved to Peoria to live with my brother and his family to be a nanny to my new nephew till I found work in my field there... My IBS had been under control and things were going well till fall of 2002.

I started to have stabbing pains in my left knee that would strike without warning... I was forced to seek out an orthopaedic doctor... It was discovered that my bones in my left leg had not grown lined up properly... I had surgery in Jan of 2003... It was a bone graft... It took me a few months to heal from that.....I had intense physical therapy and had to learn to walk again.

That spring I found a job at a greenhouse with a clearance from my docotor (as requested by the employer) I started working once again in the field that I loved... But once again it seems that fate had other plans for me... I was helping a woman pick out plants for her garden when her very active little boy ran up and jumped on my left leg!

My career was over!.. It didn't break the leg... We're not even sure really what happened... Something went wrong though because I was in constant pain and couldn't walk without help of a cane or crutches... Chronic Pain Syndrome... I was sent to a pain clinic where they didn't really know what to do with me... You see they had never had someone so young in this situation... I was given major pain medications, such as morphine, high doses of darvocet, and others, but they all made me ill... Most of their patients were elderly and they just prescribed medications and made them comfortable as possible... I was sent to a pain management class also which taught me breathing techniques and meditations... But overall I was miserable and depressed... It wasn't only the constant pain, I had lost my career, I couldn't do most of the activities that I loved to do anymore, my boyfriend was trying to be supportive but didn't understand... I saw my life slipping away... All my dreams of a career, marriage, kids and the American dream were gone for me.

Somehow I pulled myself through it though... I found some other things I could do... When I was unemplyed I started working on crafts My boyfriend helped me look into starting my own business... It really looked promising and greatly encouraged me in my darker moments.

I got a desk job doing data entry... The work was boring but the people were very nice and it brough in a little money and had health insurance... I needed to have another arthritic clean out surgery (I had one in the fall after the accident at the greenhouse)... So December 10th, 2004 I had a routine orthoscopic surgery... The surgery seemed to go very well... I even seemed to have a lot less pain overall afterwards, thought it might have done more than just help clean out the arthritic build up... I was somewhat excitied and doing well.

Then once again fate had other plans for me... I started having unusual pain... I knew it was unusual because of all my experience but my usual doctor was on vacation and his partners didn't believe me... I went in telling them I thought it was infected... They said no it wasn't and sent me home... That was a little after Christmas... I went to a clinic New Years Eve and that doctor told me to go back... He thought something may be wrong even if I wasn't running a fever... i did go back to the orthopedic office and was told I was fine and that I had just aggravated it... that doctor even made a joke to my boyfriend at the time that women complain too much... I was crying and in so much pain... No one would believe me!!.. I didn't know what to do and I was taking my maximum amount of medication... I just went home again.

A few days later I saw my regular orthopedic doctor... He drained it and sent the fluid in for testing... I had some relief from the draining (less pressure on the knee) but not much and was given more pain medication... The doctor wanted me to come back a few days later to draw fluid again... He said the test wasn't really conclusive... I went home in excruciating pain after he drained it that time.

That evening I was throwing up and passing out from the pain... I called the doctor on call and he reluctantly told me to go to the ER (he was the one that said women complain too much), while I was on the phone I was crying hystaricaly trying not to pass out... I told my boyfriend to get me to the hospital... I started screaming and crying so hard and praying like never in my life... I had never felt so much pain in my life and God help me if I ever do again!.. I thought I was going to die from the pain... If I wasn't I was praying that I would just to make the pain stop!

In the ER it was confirmed finally (by a nurse - the doctors all seemed to not want to tell us anything) that I had a staph infection... This is January 7th 2005... I had surgery on December 10th 2004 when I had gotten the infection... I was close to having toxemia and I almost had to have my leg cut off... If the doctors had only listened to me earlier it would never had gotten that bad!

I was in the hospital for a week on high doses of antibiotics and painkillers - the type they call the caner cocktail I was told... I had home nursing care for about a month with a pic line hooked to an I-V... A few weeks into my treatment I had a reaction to one of my oral antibiotics but it was misdiagnosed as the flu at first.

I ended up in the hospital near anaphylactic shock... I had what was called at one time "red mans syndrome"... I turned purple (yes purple like a plum!) from head to toe with a chemical burn from the inside out... It itched and burned... I had a high fever also... I had to be packed in ice and in the beginning it had to be decided whether to put me on Prednisone, which would stope the reaction, or not... Because Prednisone would stop the reaction but if my infection ws still there it would flair up the infection... So I could die from one or the other... I was lucky... The infection was gone.

I had been bed bound for over a month... I was weak and couldn't bend my leg from the build up of scar tissue... I had a very long road ahead of me... Lots of physical therapy just to be able to walk again... I had to break through all that scar tissue bit by bit and I had no muscle tone so I had to build all that up again... After 10 months I had 80% flexibility and my new doctor that I had gotten right away after my infection released me from physical therapy... I was told that I had exceeded his expectations and that I wouldn't get a whole lot more than that without surgery but he would not risk surgery just to get a bit more mobility... I now have a high chance of getting another infection if I have another surgery anytime soon... Surprisingly though my chronic pain was gone!.. I still had days where I had knee pain from being on it too much o the weather but it seemed to be going well.

Through all of that I became closer to my family and learned what my real strenghts were... I had lots of other challenges after all that too before the year was out (like where's that boyfriend now huh?? - another story), but I survived... I've found a new path for my a possible career which I love - teaching arts and crafts to senior citizens and working with them - I have a sort of bond with them now and they know it :)

That used to be the end of my LONG story but oh no it had to continue...in February of 2008 I slipped on the ice & had excrusiating pain again but the doctor's couldn't find anything. I went to Mayo Clinic where they couldn't find anything saying to me "we even amputies have pain.." as if I had it all in my head! I then went to IWA University Hosp. where at least they treated me like a real human being! But they didn't know what was wrong either. I was sent to physical therapy but you see my right hip now had gotten very bad with all the compensation when I walked. So I couldn't do most of the exercises without putting too much stress on the kne or hip.

I finally found my "savior" doctor this last Spring!! He saw me as a chanllenge & said he thought I had RSD...I had no clue what that was & actually most of the doctor's I'd seen didn't know what it was either.  He started me on Neurotin & I didn't need to be on all the high doses of pain killers anymore! Of course tha didn't last that long. I've had 2 spinal block since then & adjustments in my medicationd but I'm still in a lot of pain.

I work full time still & I HAVE to since I'm single with no one to really support me or especially no one in which I can have help me with myhealth isurance...that is the REAL reason I still work.  I live with my parents now who help me & it's kind of embarrasing but I have no choice. I've tried dating but I have not found that guy that is what I'm looking for & willing to help take are of me...I mean who would right? Would you go into a relationship in which you knew your partner would soon not be able to work & would need your help with almost everything & (& actually be ABLE to help them) probably not be able to have kids?? I haven't met anyone like that yet.

I told you it was a LONG story & if you made it this far through it I'd be surprised.  At least I have it here though & maybe I should start thinkng about writing a book huh? For now I'll work as a craft teacher & try to start my bead & jewelry making business.