June 16, 2009

My Life

It all began back in the spring of 1990. I was working at the time for Mizzoni's Auto Body in Lodi. A job that, I loved and loved the people I worked with. For about a month I had been plagued by daily headaches, stomach aches and this nagging pain in my elbow that just wouldn't quit. I finally decided it was time to go to the doctor..I made an appointment and went to see Dr. Gary Statmore MD in Wood-Ridge. If some of you from Wood-Ridge are reading this then you know who he is. For those of you who never have lived in NJ or in Wood-Ridge for that matter, I can tell you that Wood-Ridge is a 1 square mile town, very small but was a great place to grow up in.

Anyhow, I explained to Dr. Statmore what was going on, he took some blood, checked me out. He told me at that time I was young, strong and healthy and he didn't think it was anything serious but we would have to wait till the test results came back. Now back then I was naive when it came to anything medical. Hell, I was 20 years old, living on my own and really just out to have a good time and I usually did!..

Two weeks later I got a call at the office from one of the doctors nurses who almost sent me through the roof in fear. I will never forget the tone in this womans voice.. What a jackass. She said "Doctor needs you to come in right away!" Well that sent my alarm bells screaming and I asked why and she wouldn't tell me except to say, he needed me to come right in. Finally I got pissed and said "look lady, either you tell me right NOW whats going on or when I get there you're gonna wish you had".. She said, "You tested positive for Lyme Disease and you need to come in for treatment" I hung up the phone and got hysterical.. I didn't know what Lyme Disease was then.. All I heard over and over in my head was "Disease disease disease". My boss at the time, Freddy, God Bless his good heart offered to drive me because I was so upset but I said no I would go alone.. After seeing the doctor he made me feel better by telling me it was "no big deal, a few weeks of antibiotics and I'd be fine"...So, thats what I believed.. I did my 3 weeks of antibiotics and let it go.. I was fine right? Atleast I thought I was.. Looking back, I now know I was anything but...

In December of 1992 my oldest nephew was 7 years old and in his Christmas play at school Lincoln Grammar School to be exact. I was so excited I even went out and rented a video camera so I could tape the whole thing.. Back then all they had were those big monster jobbies that practically broke your arm to carry but, I was determined. That was my boy up on that stage and I wasn't missing it.. or so I thought.. That afternoon I had to drive up to one of the dealerships up on Route 46 in Little Falls to pick something up for work.. On the way back it began to down pour which, for me, never bothered me as far as driving but this day something was different.. I was doing my usual 80 miles an hour down RT 46 East in the fast lane wanting to get back to the office because it was almost time to go home and suddenly I felt completely and totally detached from my surroundings.Like I was there,, but not.. If you've ever tripped on Acid then you understand. By the way, I have never tripped on acid but this is what I'm told it feels like...The next thing I felt was my heart. It was racing so fast I thought I would pass out and then..it felt like my legs were gone.. I couldn't feel my legs, my feet or the gas pedal anymore.. I was sure I was having a heart attack.. I kept telling myself that couldn't be happening. I was only 22.. It was impossible.. So I FLOORED it even more which was probably REALLY stupid but by this time I was in a panic and wanted to get back to the office before I died because, thats what I really thought was happening...

Once I reached the office, Freddy, my boss at the time took one look at me and asked what was wrong. I explained and said I think I need to go home. He once again offered to take me home but I just wanted to go alone and get there as fast as I could..He made me sit for a few mins till I could relax a bit and then let me go..

At this time in my life I was engaged to a man named Joe. He was a paramedic full time. When I got back to our apartment I called him right away, by now in tears cause I didn't know what the hell was happening and he told me I had a Panic Attack.. He was right, I did..I thought, "Panic attack? what the HELL is that and WHY would I of all people have one of those?" This continued into the early part of 1993 when I also began having trouble drinking alcohol suddenly. I never had a problem with alcohol affecting me funny. I could drink like a fish on the weekend and all that happened was I had a really good time or I had a REALLY good time and didn't remember much.. ( ah the good ole days)...but now, I would have one drink and I would have one of these panic attack "things"..Needless to say, I stopped drinking. Then, the same thing began to happen with coffee..So I swapped to decaf and it still happened so then I swapped to decaf tea and that seemed to be OK. Then I noticed I couldn't stay awake anymore to go out at night..A friend and myself used to go out on the weekends. We would leave about 1130 at night and hit FM Station. Do any of you remember that place? I went there every weekend because I was seeing one of the managers for many many years on and off so the drinks were free and the nights usually ended up pretty good if ya know what I mean but now, I was falling asleep sitting at the table with my friends.. Ok get this, I was falling ASLEEP sitting in the middle of a ROCK club with ROCK music BLASTING so loud you couldn't hear yourself think but, I was sleeping? Then it got to the point I couldn't even stay awake long enough to get ready to go out and I was still having these panic episodes. Finally Freddy refered me to his doctor. A man in West Wood. He put me on some kind of little turquoise and black pills for the attacks and ran some blood work. He also ran some blood work and said my liver count was off..And unbeknownst to me he had run another Lyme Disease test which, was positive but back then, if you had a positive Lyme test after having been given 3 weeks of treatment you were considered "cured" and a positive test only showed that you once had it and nothing more.. That make sense to you? It doesn't to me now and didn't to me then..

I decided that I really wasn't getting anywhere with this doctor except that he had me on Xanax now that I couldn't get off of but I was getting sicker and sicker.. I was running constant sinus infections. I would get antibiotics for 2 weeks but as soon as they were pulled within 5 days I was sick as hell again..This doctor I don't blame to much because I just think he really had no idea about Lyme Disease. Most didn't back then. Hell, most don't now..but we're slowly getting there..

Now its 1993 and we're coming up on September. I am getting married for the first time! I wanted it all. The white gown, the perfect ceremony and the perfect reception...but, I was still sick.. So I went back to a doctor in Hasbrouk Heights from my childhood who treated us all when we were kids including my dad.. He also ran a gamut of tests and said he could find nothing... His conclusion? " I was dealing with trauma from my fathers death when I was 9 years old " and this was causing me to be sick.. huh? Yeah.. OK.. so I said alright. He sent me to see a shrink over in Hackensack..Nice nice guy, spoke to me about 10 minutes and said "If all my patients were as sane as you I'd be out of business but, because of the panic attack issue lets try some Prozac and get you feeling better".. Back then, Prozac was considered the "Happy Pill" until years later it because known as the "suicide pill"..Well, Prozac didn't work out to well for me.. I had a bad reaction to it on day 6 and that was the end of the Prozac and the nice shrink.

By September, none of this was resolved, getting worse but my wedding was in one week. Finally my wedding day had arrived and I "did" have the perfect wedding.. Everything was just perfect right down the napkins I picked out all except, the bride..I was so sick and in such a nervous state because I was sick I spent the hour on the altar in St Joe's East Rutherford praying my legs wouldn't give out and I wouldn't pass out on the altar. When the time came in the ceremony to present the Blessed Mother with flowers, instead of praying to her asking for her to help me have healthy children and a good life with my new husband, I instead was asking her to help me be strong in body so I could make it to the end.. I did somehow manage but I am still not sure how..

The Limo ride to the reception hall was hell.. I was so sick all I wanted to do was go home and sleep.. As for the food and cake we paid thousands for? Never had a bite. I was too sick to eat. By the grace of God I made it through the entire day but don't think for a second I didn't believe I wouldn't die somewhere along the line..After the reception we all left the hall about midnight and went back to our apartment. My mom was staying at my place for the next four days. We sat on the floor and counted the money gifts we were given..I didn't want to get out of my gown because I knew I would never have it on again but alas I did.. We left for our honeymoon at 2 am and drove up to the poconos. We spent 80% of our honeymoon in the hotel room.. Can ya guess why? I was exhausted... All I did was sleep.. We actually left 2 days early. I wanted to go home and asleep...

Making it through the next few months until 1994 with my job was really hard. My boss Freddy, was so good to me when he could have just dumped my ass. I know I drove him crazy with being in work one day and not the next or coming in late or just suddenly picking up and going home at 2 pm with no warning. It was horrible for all of us but he stuck it out with me.. Even offered to put a couch in the building next door that he owned so that if I needed to nap and hour a day I could. .I wish that would have worked but at that point and hour wasn't nearly enough.. On the weekends I was spending 10-12 hours in bed and the rest on the couch.. By the time the weekend hit I was exhausted.. I couldn't move.. All this shit was happening with my body and I was seeing all these doctors and none of them could figure it out..By Feb of 1994, I had no choice. I had to leave work. It was one of the hardest things I had to do up to that point. I loved my job and the people I worked with were more like family than just people I worked for and with.. It was SO hard for me to leave and I still miss it..

After I left my job, I remember sitting on the couch in my apartment one day. It was cold and snowing outside. I had seen a billboard about Lyme Disease on Rt 80 and had jotted down the number.. I took this number out and through my tears I talked to God and said "Well God, this is it. I am making one more phone call to one more doctor and if he can't help me then I will lay on this couch and just wait for you to come and call me home"..You're probably wondering why I was thinking about Lyme Disease at this point since after all, it had been 4 years now since I was tested and told I was "cured" but, once again Freddy came through for me.. He kept saying over and over, it's the Lyme Disease Rob, It's the Lyme Disease. Somehow he knew. Well I took his advice and made the appointment to see this doctor who "supposedly" knew about Lyme Disease. They gave me an appointment and 2 days later I was dragging myself into my car and on my way up RT10 to Denville to see this man..

I have to tell you, when he walked into the room I thought to myself, "Oh I"m dead".. He was an odd looking man with an accent and all I could think about was Bugs Bunny and The Doctor Killdare episode. So I"m sittin in this chair looking at this man who is talking to me and in my mind I am seeing Bugs Bunny running around calling for "Dr. Killdare, Dr, Killdare come quick Dr. Killdare"..Finally, I broke out of my Warner Brothers day dream and started answering this doctors questions.
At the end of the 2 hours I couldn't talk anymore. I had said all there was to say.. This man who I thought a little strange came over to me, sat down next to me took my hand and said, "Robyn, you're not crazy, it's not all in your head. You're sick and you have what is called late stage or long standing active Lyme Disease, Now lets get you started on a treatment plan and see what we can do. He then said, I will not promise I can cure you but I will try my best to make you feel much better than you do now".. Well that was it. I sat there and sobbed and sobbed. FINALLY, someone who gets it! Someone who understands AND wants to help me. He was very nice as I cried and told me it was OK.. To cry as much as I wanted to because for everything I've been through he's not surprised.. My tears were those of vindication, validation..

In the following weeks I called ALL the doctors I had seen before and trust me, there were many including an infectious disease specialist over at Hackensack Hospital who was "supposed to be the best in the are" I requested all my records every test ever done..When I did finally get them all in from each doctor, I studied them with a fine tooth comb.. LOTS and LOTS of test for AIDS, HIV ALL negative and LOTS of Lyme Disease test and repeat Lyme Disease tests ALL......... POSITIVE.. Every damn doctor I had seen in a 4 year period tested me for Lyme. Every damn test was positive and not ONE of them did ANYTHING about it..

I began treatment with Dr. Tarpinian whom over the years I grew to love. Treatment was very hard.. I spent the first three months bed ridden on over 2800 milligrams per day of amoxicillian and other medicatons. Then we moved onto IV therapy.. 18 inch picc lines that started from your elbow and ran inside your veins up under your collar bone and down to your heart.. That went on for 3 months. It would have went on longer but my lines get blowing out and having to be replaced. So after 3 months of that I went on more oral heavy duty medications which got me on my feet to a point but only to about 50% of what I used to be. After seeing Dr tarpinian for 3 years he decided he was moving to PA and getting out of treating chronic lyme disease. You're probably wondering why he would do that well, it's simple really. He was loosing his mind.. People were coming from ALL over the COUNTRY to see him because they were all SO sick, some like me some worse some a little better but ALL chronically ill with Lyme Disease and he, mentally couldn't handle it.. I could not nor have I ever or ever will blame him for packing it in..In the early 90's they didn't know a whole lot about how to help Lyme victims like myself. Oh they knew the damage it may cause but what to do about it? Not so much. This man was going 24 hours a day 7 days a week trying to save us all. Some got better, the majority didn't and he was losing not only himself in the sea of chronically ill people but also his family and although he didn't get me back to where I wanted to be he did bring me half way. He was always there for me no matter what the time of day or need and for these things I will always respect and love him.

By 1997 I was on my feet to a point, mostly because I would push myself beyond my limits. My marriage was now falling apart. Half because I was married to a man who refused to grow up and half from the pressures of my illness. We had to declare bankruptcy because of medical bills, we couldn't afford to buy food. My Mom and my home nurse was doing that. My mom was cleaning our apartment because I couldn't and as for Joe? Well he just couldn't take it so he would take jobs that made sure he wasn't home most of the time. In the meantime we were living in the upstairs apartment of a 2 family that his parents owned who lived on the first floor. They were never any help and infact all they did was make matters worse by pushing him daily to divorce me..I would be upstairs for days on end while my husband was an over the road trucker at the time and gone 4 nights out of 7 and I never heard a peep from his parents.. Never saw if I needed anything, if I was OK if I was alive. Instead, my mother who lived 40 mins away would come down , clean my apartment and cook my meals for the week and freeze them so all I had to do was pop em in the microwave... In Dec of 97 I'd had it.. I was done with this marriage. Between Joe being gone as much as he could, the mental abuse from his parents and still being sick ontop of it I was fried.. Enough was enough. I left him the day after Christmas that same year.

In 1998 I met and married Lou and although we have our days when we are like oil and water and although we have had a really hard time in the past I can still say , marrying Lou was one of the best moves I ever made. In 1998 I had been without a doctor for about 2 years so I did what lots of chronically ill people do who the medical establishment doesn't understand.. I went to the doctor for chronic throat and sinus infections just so I could get antibiotics because I knew if I get 3 weeks worth I would at least feel well for those 3 weeks. (You can get very good at faking sinus infections when you have to)

In Jan of 1999 I decided it was time. I needed to find another doctor who was proficient in chronic long standing active Lyme Disease. So I called a few people in the Lyme Community and got the name and number of a woman doctor..I saw her for 4 years. She would do all kind of wacky tests on me and I was on all kind of antibiotics for a long time but, was not getting better only worse. In between these 4 years I had a lot going on besides being sick.. I got married moved 3 times and had a mother who was dying of Pancreatic Cancer that I was caring for. Once mom passed away in 1999, then my husband got hurt with his back in 2002 and had to stop working we knew financially, we would be in trouble. We needed to own a home. With his injury an me being as sick as I am we could no longer be at the mercy of a landlord who could, at anytime, decide they wanted you to move. We couldn't live under that pressure. If we were both healthy it would be no problem but we weren't.. So, somehow my husband got hooked up with a builder here in South Carolina (I won't even go into how that happened, thats a whole other story for another day). This builder promised us a brand new home on a half acre of land in a nice area with a no money down mortgage.. Well how could we pass it up? In the situation we were in then, we couldn't...So on June 26th 2002 ( My moms bday) we packed the car, the movers came packed the truck and we pulled out of Carlstadt at 2 pm in the afternoon..

Once again I was starting over, medically that is.. It was time to hunt for a new doctor. One who knew about Chronic Lyme Disease.. It started all over.. Round and round to all different doctors.. NONE of them knew what in the hell I was talking about.. It was like being in a different country.. I guess we were here about 2 months when one night I went to eat some BBQ.. which I love and it felt like the food wouldn't go down. It felt stuck in my chest. In one weekend I was in 2 different emergency rooms 3 times for the same reason.. Given all kinds of tests and digestive cocktails.. No one knew why I was having a hard time swallowing solid food..and it just continued to get worse and worse and worse...The last 2 gastroenterologists I saw turned out this way, One said " go home and get your anxiety under control and then come back" the other one took me seriously or so I thought, did a scope, said I was inflamed from my tongue all the way down to my small intestines but couldn't understand why I was having such a hard time with food sticking or getting stuck in my chest. Couldn't understand why when I told him it was like the message from my brain to my throat to swallow seemed mixed up. Couldn't understand why when I would tell him,"Its as if my brain tells me to swallow when I don't want to and not to swallow when I need to" there's a definite disconnect..Well I requested my records from him and his dopey nurse also sent me his "personal notes" on my case and there's good reason why he couldn't understand my complaints. Because "his" conclusion? "Patient must be bulimic and or anorexic which would explain the discoloration of two of her teeth".. HUH!??! Now has he ASKED me about these issue's I could have made him aware that the few teeth that were discolored were teeth I had bonded but ran out of money to go back and have them colored correctly... but of course, he didn't ask he just "assumed" as most doctors do..I on the other hand didn't let it go. I received a bill from his office that same week to which I picked up the phone got his assistant on the phone and asked her to please relay my message and it went" You will see your money when hell freezes over, how dare you make an assumption about me like you did without even asking me if I even had a history of something like that and you really need to get your head out of your ass and your ego back down where it belongs before you kill your next patient".. I never did get another bill..

So here we are present day.. I am still seeing the MD I have been for the last 4 years. Nice guy but dumb as a stump when it comes to Lyme Disease and I am also seeing a Neurologist who, if I can ever get back to is from New Jersey and knows about chronic lyme and what it can do and WANTS to learn more so she can HELP me..I will be seeing her again no later than next month. Things were put on hold because of Lou's back problems but I can no longer wait...And incase you're wondering, I have stumbled on a VERY good reason why I can not swallow most solid foods any longer and why I am in so much digestive pain each and every day.. There's thing called Bells Palsy, I'm sure you've all heard of it. Well there's another thing called "Bells Palsy of the Gut" and thats when the cranial nerves in the brain are affected by Lyme Disease. Number 13 cranial nerve if I remember correctly which is responsible for SWALLOWING and DIGESTING. I will be bringing the articles written and studies done to my neurologist when I see her next.

Now you all know what happened to me all these years, how I ended up as sick as I am and really it's because of ignorance, over inflated egos and neglect.

As for now, my days are spent pushing myself beyond my means to care for Lou and the dogs, mostly the ones who are sick. Most days I am exhausted and in pain from my head to my toes inside and out. I don't eat a lot because I can't which is how I stay thin ( I don't recommend this to anyone)...Its kinna like having the WORST flu you've ever had in your life 24 hours a day 7 days a week and it just never ever lets up not even for a moment..

So this is my story and how I ended up this way. My advice to YOU? PLEASE be vigilant about your own health care. Take nothing for granted or at face value. Research everything when it comes to your health. Be your own advocate and if you think something is wrong then make it right no matter what you have to do and NEVER EVER let a medical doctor play GOD with your life. Be Active in your own medical decisions ALWAYS...And last but not least, if you're sick or you feel you're getting sick, NEVER EVER give up...

I wish you peace love and good health.

PS: Quickly I would like to say thank you to Freddy who tried to help in any way he could and kept me insured when I needed it most. I will always love you and be grateful to you for that. To Dr Tarpinian who tried his best and always treated me with respect and was always there for me I thank you from the bottom of my heart. To my Mom who never gave up on me, my rock, my inspiration, my hero, I love you for everything you always did for me even at your own expense an to my husband Lou,thank you for never giving up on me or us when it gets really hard, for loving me like no other man ever has. I love you..

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~Robyn~ XO