Life goes on…

Pootie

I would like to introduce you to the latest addition to our family…Pootie. She is a toy Poodle that we fell in love with at a local rescue and she has filled the terrible void in our hearts since the losses of our beloved cat and dog over the past few years. Don’t let this picture fool you, she is full of pep and loves to chase her toys around the house! She watches everyone in the neighborhood out the window while sitting on Mama’s lap in the morning at the breakfast table and never fails to let us know with a resounding “woof” when someone is coming to the door. She has really raised the spirits around here and we are lucky to have her.

As far as my Lyme battle is concerned, things haven’t changed much. I am doing very well physically, thank the Lord. I am getting stronger every day, putting on more weight, able to do more for myself, suffering less and even doing some of my own errands. The battle now lies more in the challenge to resume a normal life.

As I mentioned in my previous post, the ability to transition back to living a “normal life” when you have been isolated from society for four years is a daunting task. I lost everything when I became bedridden. I lost my career, my apartment, my finances, my drive to excel at work, my stamina, my health, my confidence, my connections and my ability to relate to others. I became totally self-reliant, alone and comfortable that way which is not something that is easily undone. I have to somehow figure out a way to reintegrate back into society in order to live a life again.

In the past two months, I have taken some steps to do that. I have seen two doctors to address health issues that were not related to Lyme. Basically, I took care of maintenance issues that had been neglected because I had always been too sick with Lyme to get into an office to see to them before. I also wrapped up a tax issue that was hanging over my head and that was a great relief to me. Now I can move forward with some financial strategies before the end of the year which will lighten my burdens. I saw my primary care doctor and started researching for a counselor who specializes in people who have chronic illnesses that are trying to resume normal lives. Maybe talking to someone will help me work through hidden issues built up over these past four years.

I have also been offered a small job in my doctor’s office one day a week for a few hours, if I can handle it. This will not hurt me physically or disrupt my disability status with the government. I need a reason to get out of bed, a reason to get out of the house and this will give me a chance to slowly ease my way back into a work environment under the watchful eye of my primary care provider which is a win-win situation all around. She can monitor my progress while I work and if I am not doing well, I can always take time off with her understanding why I need to be out. I really can’t say enough about how much this woman has done for me throughout my illness. She is throwing me a lifeline from drowning in a sea of despair as I lie here in this bedroom.

If the office job does not work out for whatever reason, I will have to consider seeking the assistance of a headhunter to find employment. I am qualified to do many things but when trying to make a complete career change, in this unstable market and with the limitations that I possess, I can only imagine that I will need some serious help in finding a job. I can’t believe that having a bachelor’s degree and a master’s degree would be a negative thing. Not to mention, I only want to work part-time, with no benefits and I don’t want to make that much money! One would think I should be pretty marketable. Geesh.

It is very difficult to start your life all over again in the middle of your life but what other choice do I have? I never expected this to happen. I began my career push at the age of 25 when I really put my nose to the grindstone, I found EMS, became a Paramedic and got serious about college. I didn’t stop until I was 32 and had finished graduate school then thought I was going to coast along and reap the rewards of all my hard labor. Six years later, I was bedridden with Chronic Lyme Disease and the entire thing was over.

Now, I will be approaching age 45 soon and will have to start all over again, twenty years after the time that I started my first career path. So many questions remain unanswered. Can any of my past carry over to aid my future? Do I even want it to? I have little desire to remain in the same field that I used to work in. Will my body even be able to handle going back to work full-time? Can I face a relapse of my disease? Will work push me to relapse? Will I find a job before the money runs out? How long will my Mother stay healthy? If she starts to fail, who will take care of both of us?

Chronic illness at the age of 39 was never something that I expected to face. I don’t think anyone plans for something like that. Now that it is here, I am just doing the best that I can to deal with each issue as they arise. I am currently at the stage of “how do I reintegrate back into society without relapsing” and it is turning out to be one of the most difficult stages from the mental standpoint. It is frustrating, hesitant, confusing, dark, lonely, discouraging, fearful and agonizingly slow.

I would like to be hopeful. I would like to think that I am highly qualified to do many things and I have such great life experience with all that I have been through that any employer will think I am a phenomenal asset to add to their team. It would be thrilling to believe that someone could hear my story and think, “Wow, this girl has got some serious courage to survive the past four years and be out here looking for a job to get on with her life. We need someone like her!” In all honesty, I am just not thinking like that right now.

I am only thinking of what a daunting task it will be for me to take a shower, put on a suit, get in the car, drive to an interview and survive a half hour of answering someone’s questions without being so tired that I want to throw up. I will be sitting there with my head swirling as I attempt to clearly decipher what they are asking me as I piece together words that sound witty as they leave my tongue while the sweat runs down the back of my neck. I will smile though my dry, chapped tongue is stuck to the top of my mouth. Then as I rise to leave on my unsteady legs, I will use all my power to gracefully exit the building like a swan hoping they didn’t notice that I have exhausted all my energy stores for the next three days.

As I sit before the blasting vent of the air conditioned car, chugging water, stripped of my suit coat, sweating profusely and waiting for my equilibrium to return so I can safely drive home I will remind myself that this is Chronic Lyme Disease. This is my life. This is my future forever and this is what it will take to get a job. Get used to it sister cause it doesn’t get any easier from here. Welcome to the rest of your life. If you thought the last twenty years was a tough climb to build a career, you ain’t seen nothin’ yet.

Went “dark”…

So, I kinda went “dark” there for about six weeks or so on the blog. Sorry about that. It was a combination of having nothing to say and basically wanting to wrap myself under the covers and shut out the world for a little while. I wasn’t feeling poorly, wasn’t particularly depressed about anything, wasn’t busy with other things… I was just blah.

I got hooked on Netflix and spent most of my time watching British television shows, odd I know. What can I say? They intrigue me. I seriously think that I was born in the wrong country at the wrong time period to tell you the truth. Ah well, maybe I will visit Europe someday and find out if I would really be happy living there in my retirement.

Truth be told, I am a little lost right now with what my next move is in life. That is probably what is contributing to my blah status. I am getting better from my Lyme Disease and it is making me antsy to do something besides spend every day in this bed. I just don’t know what that something is supposed to be? I know that I cannot return to my previous profession because my body would never withstand the pressure of 60 hour work weeks and the mental stress that went along with my job. I would be back in full blown crisis in a matter of weeks.

Not to mention, it would be absolutely stupid of me to sacrifice my disability benefits and Medicare insurance on the risk that I could return to my prior profession knowing that there is such a risk of failure. So, what am I to do with myself for some type of future? I would like a reason to get out of bed every day. A small job that gives me some self worth, brings in a little money to help with the medical bills but doesn’t jeopardize my benefits. Is that too much to ask?

It is such a catch-22 when you are placed on disability because they put restrictions on you that make it difficult for you to try going back to work. I want to TRY it out without fear that I will lose everything and then if I fail, I will not be able to get my benefits back if I have to go back to bed full time.

My situation is even more complicated because I discharged student loans too. The government is watching every move I make because they forgave a lot of money that was spent to put me through graduate school. I don’t blame them and I am not trying to “screw them” out of their money. If I could pay them, I would! The trouble is I can’t even work enough to pay my medical bills let alone provide for myself which is why I am on disability in the first place.

It has been very hard to accept how my life has gone from freely providing for others, spending money at will for gifts and never worrying to where I am at now. I think about every trip to the grocery store and how I can not eat because I don’t want to spend the money. I worry about how I am short $300-$500 every single month on meeting my bills due to medical costs. I watch the credit card bill climb and the savings accounts fall. I cry over how much longer I can hold on without a job. I need a job but I simply don’t know what to do for work.

I don’t know what my body will tolerate. I don’t know what I am marketable for anymore. I have a very specific master’s degree that only qualifies me to do a certain job which I can’t do anymore. How can I turn that into something else? It’s a complicated situation that doesn’t have an easy answer. I have spent months trying to figure it out and the past six weeks rolling it over and over in my brain. I still don’t have a solution.

What I do know is that lying in this bed for much longer isn’t going to find me a job. I know that something has to change. I need to make some type of forward motion if there will be a change in my life. Whether that means getting out of the house more, starting an exercise regimen, seeing a therapist, going out to take photographs more often or simply reconnecting with friends again, I must do something to break this pattern of isolation. I have to test this body now and see how much it can handle. It is fine while I am lying here all the time but I have no idea how it will hold up in the real world.

This is my fourth year of fighting Chronic Lyme Disease. I think it has taken up enough of my time now. I want my life back. Hopefully, once I start putting one foot in front of the other the path will just open up in front of me and show me the way. It’s time to come out of the dark.

When you say, “I am sick…”

The following passage is not written by me. It is completely the words of a woman named “torsum” who wrote on a blog that I happened upon. In order to protect her privacy, I won’t say which blog it was but she was talking about the unexpected death of her son. She so eloquently wrote about what it felt like to be treated by the people around her after his death, even those she had known so well.

As I read these words, all I could feel was how I was treated once I became sick and people in my life started to find out. I hid my Chronic Lyme Disease for at least five years because I didn’t want to be looked at any differently. I was right to do so because once I couldn’t hide it anymore, the dynamics of my relationships started to change. Read her words below and adapt them to someone who is fighting an illness. Maybe then, you will know what it feels like when I had to say, “I am sick…”

I quote torsum as I say, these are the people in your life when something terrible happens:

The comforters – these beautiful people are warm and tender. They look into my eyes and see my tears, and they seem to know intuitively what I need. They can articulate how they feel, and recognize my never-ending pain, and sometimes they don’t need to say anything at all because their body language is obvious. They hug and they squeeze my hand as required. They’re not afraid of their emotions and tears, or of mine. They make it clear how much they care about me and how much they also miss my son. They are, unfortunately, so rare.

The try hards – they have their heart in the right place, but they don’t know what to say or how to be.  I totally understand because I don’t know how to be either. They fumble and stumble with words, but their presence is noted and their love is felt.

The fixers – these people are going to ‘cure’ my grief! They tell me that ‘time will heal’, to ‘keep my chin up’, to read this book, to go to church, to see another therapist, to be positive…..but have they ever lost a child? No.

The drama addicts – these people were once friends, lost through the passage of time and moving cities etc. They came out of the woodwork as soon as they heard Will was in ICU. They emailed, sent texts and were wanting to know the details of my ‘crisis’, and how on earth I was coping. Then after the funeral, they disappeared again.

The avoiders – they literally turn the other way at social gatherings, or in the shopping centre. They have absolutely no ability to communicate, although they did send a card or flowers at the start. And if by chance they do interact, there is no mention of what has happened. It’s like he never existed. These people are good to hang out with on days when you are trying to move forward and pretend it never happened yourself.

 

I have had comforters, try hards, fixers, drama addicts and avoiders since being stricken with this illness and that’s ok. I have come to accept that not everyone knows where to turn when someone that they love becomes THIS sick. They don’t know what to say, how to help, what to do or not do at any given time…they feel helpless. What I won’t accept are the ones who gave up trying.

My body may still be lying here in this bed, withering away from disease and pain but my mind and my heart still function and feel. I know now, more than ever before, who is standing in my corner of life and I appreciate every one of them. The others, I have let go of because they did not deserve to be there in the first place.

There is nothing worse on this earth than wasted time and wasted love because God only gave you so much of each. Use it wisely.

How do I love thee…

IMG_2283

This is a photograph of my grandparent’s wedding, may they both rest in peace. My grandfather died at the age of 52 from heart disease and cancer while sitting in his favorite recliner. My grandmother had gone outside to warm up the car to take him to a doctor’s appointment and when she came back in, he had passed. She carried on with her life, in her grief, for nineteen lonely years until she passed from lung cancer. Blessedly, it was a quick passing. A spot seen on an x-ray which showed a large tumor pushing on her trachea and six days later she was gone.

Her three oldest grandchildren (myself and my two brothers) were in her hospital room, while her five children were convening in the hallway as they had rushed there with only two hours notice. I was at her bedside holding her hand, her eyes closed from the morphine and her breaths labored, willing her to go be with my grandfather. I could vividly see him in heaven, putting on his best suit and tie as he prepared for her to come be by his side. They had been apart for so long. I promised her that we would be fine and that it was time for her to go be with the man that she had loved all the days of her life. I gave her the permission she needed to let us go. No sooner had those words passed my lips, she took one last deep breath and left us.

It was the most peaceful and beautiful passing I have ever attended in my life. After a career of working in medicine, I have had the unfortunate responsibility of being at the bedside while many people have made this journey. Sometimes it is harried, loud and filled with chaos as we struggle to fight against the inevitable while other times it is tranquil, peaceful and filled with the tears of acceptance that there is no way to stop it. Either way, the end result is always the same. A person has to leave this world and hearts will be broken as they are left behind to grieve the loved one who has moved on.

Either way, there is usually that one person who meant more than anything else to the departed. A wife, a husband, a lover, a fiancé, a partner or simply that significant other who never had an “official title” but everyone knew was the deceased’s love of their life. They were accepted by the entire family as such, they were at every family function, every holiday dinner, in every family photo, always on the arm of the departed because they were in love and it was as simple as that. Whether the passing was swift or a long convalescence, the special person left behind is immediately surrounded by everyone as if they can help ease the suffering he/she is going through. Ironically, it is at this time when the person typically wants to be alone the most.

They want their memories. They want their loved one’s belongings around them. They want to cry without having to suppress it or explain themselves. They want to touch the things that give them comfort and they want to stare off into space for hours without being asked, “How are you doing?” They are tired of hearing, “I am so sorry for your loss.” It doesn’t help them. Nothing will help them right now.

They know that people mean well so they try to be courteous but the suffering is immense. It is even more difficult to play the host for the days of the wake and the funeral as they shake hands, accept hugs and kisses on the cheek as people attempt to console them while they convey their sympathies. The only peace they have is when everyone leaves the funeral home and they are left alone with the body of their loved one. Even then, the funeral home directors linger politely in the background and they feel pressured to leave so the staff can close up for the night. Time is moving too quickly and soon their loved one will truly be taken away from them and placed in that cold ground where they cannot touch them. Reluctantly, they walk out the door for the night knowing that the next day the funeral home will be filled with people once again and their private time will be over.

Somehow, they survive the events of the funeral and as they watch the casket lowered into the cold ground the world around them ceases to exist. Everything is silent. They don’t know how they are allowing these men to turn the cranks that loosen the straps which lower the casket into the ground. Inside they are screaming, “NO! STOP! Do not put him down in that hole in the ground. It is cold, it is wet, it is dark…he will be alone. Please put me in there with him….” but no words pass their lips. The tears stream down as the dirt is shoveled into the hole. Each clump is deafening.

How do I love thee? How could I not? You were my entire world. My sun, my moon, my air to breathe, my joy, my sorrow. The hole in my heart will never heal, this I know. I have no intention of letting it heal even if it tries. I will make sure that it remains an open, festering wound for the rest of my life because I had my one opportunity at happiness and it was with you. Now, you are gone and with that, you took my happiness as well. I am ok with that. I will continue on breathing in and out every day until the Lord sees fit to take me to you once again. I will fill my days with trivial, menial tasks to pass the time while I wait but nothing will bring me joy ever again. I don’t expect it to. My fate has been sealed. That is how I love thee.

The best that I could do…

Lyme Flag

When someone is bedridden with Chronic Lyme Disease, life gets a little bit more difficult when they want to do something special to celebrate an important occasion. The month of May happened to be Lyme Disease Awareness Month and being this sick, there was very little that I could do to attend any rallies to support the cause or raise funds for research. I would have loved to travel to Washington, D.C. for the annual Mayday Protest and subsequent rallies that transpired at the IDSA headquarters featured in the following news story:

http://www.truth-out.org/news/item/24027-irate-lyme-disease-patients-storm-dinner-party-at-idsa-headquarters

Last year, in 2013, the entire world got involved in raising awareness about Chronic Lyme Disease by lighting Niagara Falls (lime/Lyme) green on May 17th. Canada really got involved in the cause by lighting up the CN Tower green for an evening in Toronto and turning the Langevin Bridge green for a night which is a bridge in Calgary, Alberta, Canada. It connects Downtown Calgary with north-central Calgary. Lastly, here in the States, Virginia’s Governor McDonnell lit up the Governor’s Mansion in lime green on the night of May 17, 2013 to show his support of the legislation that he is trying to push through in favor of better healthcare for Lyme patients. We have many Congressman, Congresswomen and Senators who would like to see us receive the care that we deserve but we still have a large fight on our hands.

Every year, we fight for what we think is right for the Chronic Lyme Community which is: recognition that our disease is REAL, recognition that we are suffering and need help, recognition that the help should come from our doctors and health insurance companies at little to no cost from us and more funding being spent on Chronic Lyme Disease research so other people don’t end up living the hell we are living. It really isn’t that complicated. The CDC admitted between 2013 and 2014 that their estimation of how many people who actually HAVE this disease was WRONG. They thought that only 30,000 people a year possibly contracted Lyme Disease when in truth, over 300,000-400,000 NEW CASES are contracted every year. If they could be wrong about a silly little thing like that, couldn’t they possibly be wrong about how many of us out here are currently suffering and how many cases have gone chronic by now?

People who are living with Chronic Lyme Disease have worked very hard to get the word out about this disease. Every year we spend eleven months getting ready for May…building up the strength to make the posters, booking the hotel rooms, arranging the carpools, making the phone calls to team up with our friends from last year to see who is well enough to make the trip, sending out emails, arranging for the news stations to be at the rally sites if possible, sending out news stories to the papers in the hopes that they will be interested enough to file them, finding the money to buy the plane tickets when we don’t have enough money for our own medicine, packing our wheelchairs, walkers, canes, bags and bags and bags of IV fluids and medications that we will need for the trip and then we head out to the rallies all over the country, hoping against hope that we won’t get sick and end up in the hospital while we are there.

We muster our strength to spend one month, the month of May, trying to convince the IDSA, the CDC and the World that we are DYING of this disease but no one is listening. Don’t let the pictures fool you. We may look like we are not suffering in some of these pictures but it is often thanks to high doses of pain medications that we are even there. It is often the case that we will be at a rally for three hours and then spend then next four DAYS in bed unable to move, even to feed ourselves, or get to the toilet without assistance. We will cry out in pain and discouragement, hoping that we have done enough but knowing that we will have to be back to fight again next year. You can see all of the events, rallies, protests and support programs that went on around the United States by clicking on the link below. Once you click on that link, please click on each of the pictures and you will get further explanations about what you are seeing. Here are the photos from our United States fight in the year 2013:

http://worldwidelymediseaseprotestus.blogspot.com/

The following link is a collection of all the events, rallies, protests and support programs that went on around the world to get the word out about Chronic Lyme Disease in 2013. I know that the people around the world suffer the same physical pain that we do but their travesty is even greater because their governments aren’t even considering their pleas. Most of these patients are having to travel to our country or other countries than their own for treatment. The situation around the world for treatment of Chronic Lyme Disease is horrific and they cannot get care without having to travel hundreds to thousands of miles from their homes. Our poor neighbors to the north, with whom we share a wonderful relationship, are suffering and we feel helpless when we are sometimes 5 miles across the border getting treatment that they cannot receive in their own country. Please take the time to click on the link and see how they are fighting for their lives:

http://worldwidelymediseaseprotest.blogspot.com/

This May, as I was sitting in my bed trying to figure out a way to do anything possible to contribute to Lyme Disease Awareness Month, I stumbled upon a website where I could buy a flag at www.lymeawarenessflags.com. So, I let my fingers do the work for me and I bought myself a flag to hang in my bedroom window. If I am to be relegated to spending my life in this dungeon of a bedroom with the blinds drawn everyday, then I want the world to know that the person who lives inside here is fighting for her life. It may be a small thing, but it was the best that I could do.

Lyme news to share…

Almost another full year has passed since I was featured on Action News and I am still in bed fighting my Chronic Lyme Disease. Tonight they did a story on Lyme Disease again and it featured the incredible Dr. Kerry Clark. This man has dedicated his research career to proving that Lyme and other co-infective bacteria are actually found here in the south. He has been collecting ticks from all over the region and has been testing patients who have submitted samples of their blood and tissue in order to follow cases for over ten years as he worked on a massive clinical study that was just released. This study showed that Lyme does in fact originate in ticks here in the south.

Here is the link to his published clinical study:

http://www.medsci.org/v10p0915.htm

Here is the link to the news broadcast that was on Action News tonight:

http://www.actionnewsjax.com/content/topstories/story/UNF-professor-finds-Lyme-disease-in-the-South/mgtusAsMyU6RzY-qLJKvsg.cspx

The month of May is actually Lyme Disease Awareness Month and for those of you who are able to leave your house, unlike myself, this would be a great time to maybe learn a little bit more about tick prevention and make sure you know how to keep yourselves safe when participating in outdoor recreation. I don’t want any one of you to end up like me. This makes my fourth year of aggressively fighting this disease and my third year of being housebound and mostly bedridden. I had a strong knowledge about Lyme Disease and I knew about tick removal and tick prevention, yet I still ended up with this debilitating disease. Please don’t think that because you live in a southern state that this can’t happen to you.

There is plenty of information online about how to protect yourselves and how to correctly remove ticks so I won’t use my limited blog space to educate you. I just encourage you to check that information on the internet right away and be vigilant for both yourself, your family members and your pets. Also, if you believe that you have been exposed, if you feel ill in any way after an exposure or even if you simply suspect that you possibly have contracted this disease….get treatment IMMEDIATELY. You don’t have time to waste. The clock is ticking from the minute you get bitten.

If one doctor refuses you antibiotics, find another one who will give them to you. This is nothing to fool around with. You can either argue with a few physicians over getting a couple of months of medicine or you can spend five years in bed, lose your career, your income, your savings, your health insurance, your house, your ability to walk, your health and everything else in your life. I would choose the few arguments with the doctors for immediate antibiotics if I could do it all over again.

There are hundreds of thousands of us out here who are struggling with Chronic Lyme Disease and for years we have been suffering in silence. It is finally starting to become noticed in the mainstream media and we are slowly starting to be heard by some of the state and national government legislatures. Our battle continues in an attempt to get better care for ourselves but if we can at least save some of you from going through the hell that we are living then we will do everything in our power to get the word out to you as our primary goal. It is too late for us but not for you.

To celebrate Lyme Disease Awareness Month there will be a concert called Lyme in the South Music Festival this weekend on May 17, 2014 at 3pm at the River City Brewing Company located at 835 Museum Circle  Jacksonville, Florida. Here is the link for further details or you can Google it as well:

http://www.lymeinthesouth.com/

I encourage you to attend if you live in the Jacksonville area so you can support the cause, enjoy some great music out on the deck beside the beautiful St. John’s River, learn a little bit about Lyme Disease, savor some wonderful food and beverages and simply have a great night out meeting some strong people who are fighting for their lives. I can assure you it will be an enlightening experience. I am only sorry that I won’t be there to meet you.

The journey…

I have been spending a lot of time lately watching television shows and reading articles about people who have interesting careers. People who spend their lives climbing the world’s highest mountains only so they can be the first to ski down the steep vertical slopes of these facades, sometimes without oxygen, from death defying heights of 29,000 feet. I read about the awful tragedy of the avalanche that killed 11 climbers in 2012 on Mt Manaslu as three of the adventurers were attempting to accomplish that goal. The avalanche killed a well known steep skier and mountaineer named Remy Lecluse who had spent his entire life dedicated to the sport and was certainly one of the best in the world. He had planned for every possible emergency on the mountain that he could control. This was one thing that was out of his hands and he lost his life on the mountain that day.

I have read about amazing people who have rowed across oceans solo like Roz Savage. others who have swam from Cuba to Key West like Diana Nyad and people who have made a life out of following dreams that some of us could never imagine. I have sat in awe of these people, wondering how they have had the courage to take the first step on these journeys. There are some people in this world who live extraordinary lives and I truly want to be like them when it is time to start my life over.

You see, I consider this time with Chronic Lyme Disease as a time of change in my life. It is almost like my life came to a complete stop. I lost my health, my career, my home, a lot of my friends, most of my money, all of my hobbies and a good majority of my belongings. I figure that it is a good time to completely start over. My health will not allow me to return to most of those things. I cannot return to my career or my hobbies so I have to find a new way to make money to support myself in the future. For three years I have been housebound or bedridden. As I work to improve my health, I must find a new way to live my life.

Instead of looking at this journey in a negative way, I would rather look at it as a door opening to starting life all over again. The bottom line is, “What am I passionate about?” I know that when I started my last career it was because I felt a passion for it. I would lose track of time when I was taking care of people. I would forget to eat lunch, I would forget to return calls, heck…I would forget that I had to go to the bathroom! The days would fly by and I used to say, “They actually PAY me to do this?” I was so wrapped up in what I was doing that I simply lost track of time. I was intrigued by medicine and that propelled me to stay in a career for almost 20 years. Then I got sick.

Now that I have become the patient, my passion for medicine has completely evaporated. It is sad to say. Being on the other side of the exam table where I have needed to use my education to try to save my own life has exhausted my desire to spend every day submerged in the pain and suffering of people who are dying. Now I would like to find a career that celebrates joy and happiness every day. Something that intrigues me but also uses my talents for beauty, kindness, creativity, joy and is not a matter of life or death. I have seen and felt enough suffering to last a lifetime.

So, I struggle to be patient as I wait for my next “passion” to be revealed to me. I know that there must be something out there that I can contribute to in society once my body has healed enough to re-enter the workforce but it has not shown itself to me yet. There is the saying, “The mind is willing but the body is not able.” That is most definitely the case and it is a difficult place to be in right now. In the meantime, I will continue to marvel at the wonderful careers that people have all over the world and think about how fortunate they are to have found their calling in life.

I hope that when it is my time to start over again, after this Chronic Lyme Disease has lessened its grip upon my body a little bit, that I will be able to find something to be passionate about again. In the meantime, I will continue to marvel at all of the wonderful careers that people are blessed with all over this world and I will fantasize that someday I may be able to do something like them. I don’t want a career that equals stress or a job for a paycheck, I want a life of passion where I contribute to society in my own little way.

To travel the world with my laptop writing about all of the fantastic sights that I see, to take photographs that move people’s souls, to own a flower shop that makes people smile, to work in a small coffee shop in Paris where people mingle, to be a wedding planner that eases people’s burdens and brings them joy on the biggest day of their lives, to write a weekly article in small newspaper answering their questions… it really wouldn’t matter what I end up doing as long as I am passionate about it. Life is about the journey and when a chronic illness nearly ends your life, your priorities about how to live it become clearly defined.

Rough ride…

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~This quote was posted by someone on Facebook and I fell in love with it. This perfectly reflects how I feel about the journey through Chronic Lyme Disease.

I just looked at my blog for the first time in many weeks and I couldn’t believe that I had only written one entry in the entire month of March. What a slacker. Then again, it has been a rough ride lately. As you know, I had a relapse of my more serious symptoms of Lyme and I was back in bed 24 hours a day. It was all I could do to eat something and take my pills every day so I didn’t feel much like writing. My apologies for leaving you all hanging like that.

Look at it this way, my silence gave you more time to catch up on current events like following the search for the missing airplane, the blade runner’s trial, the beginning of baseball season (go Red Sox!), Russia quietly taking over the Ukraine, William and Kate taking George to New Zealand and watching a shoe being thrown at Hillary Clinton’s head during a speech. If you weren’t glued to the television or internet like I was then maybe you had a chance to do that spring cleaning you keep talking about while you weren’t reading my blog. Those windows can take forever!

Either way, here is a short note to tell you that I have survived my most recent battle in the ring with Lyme Disease and I am on the mend. I went to Melbourne Beach again to see the doctor and he put me on some new stuff which is helping. I was positive for candida plus all the other nasty stuff (as usual) so the war rages on. It is a simple concept really… I did too much during our move in November and December so I am paying the price now.

As most Lymies will tell you, there is no telling how long it will take for me to get completely back on my feet. It is a day to day battle but I am feeling a little bit stronger and that’s all I can ask for when it comes to this disease. Now I need to put some more weight on and get back to how I felt last September. It’s amazing how something like moving will make a healthy person sore for a few days to maybe a week but for a Lyme sufferer it means months in bed. I guess my friends might understand if I politely refuse to help them move in the future eh?

So, it’s a new month and a new opportunity to write blog posts. I am already tied with last month so I am off to a good start. It can only go up from here! Hopefully this rough ride is over and I am headed for smoother waters…

An easier time…

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As I lie here in bed trying to fight this relapse of my Chronic Lyme Disease, I can’t help but think back to when times in my life were easier. I owned a house on a lake and this was the sight that I woke up to every morning. It’s not to say that I didn’t work hard or have my struggles with money because I did, just like everyone else in the world. I had multiple jobs and then I went to graduate school for a master’s degree so I was always ambitious. When I say that things were “easier” I mean that there was still joy in my life and there was still reward for hard work.

Since my health has deteriorated from this disease, every day is a battle just to survive. Every day for the past six years there has been pain, suffering, loss, struggle, medication, doctors, willpower, effort, tears and the never-ending question of “when will this hell be over for me?” This is a disease that saps away your joy. It takes away your ability to laugh. You know, those deep down, guttural laughs that you share with your best friends when the most stupid joke just hits you the right way and you can’t stop laughing until tears are running down your faces. Yah. Those kinds of laugh-fests. I haven’t done that in a long time.

As the years have gone by, I have learned how to cope with loss. I have gotten a thick skin and built up a wall of steel around my heart so that I won’t get attached to anything or anyone because Chronic Lyme Disease has a way of stealing everything from you. As my balance failed and my body got weaker, I had to give up ballroom dancing. My feet were swelling after every practice and the muscle pain was becoming intolerable after only a one hour session so I knew that I couldn’t keep it up any longer. When my headaches worsened and I had to wear earplugs in the bars, I had to give up playing on my competitive billiards team. The hand tremors were messing up my game anyways and I couldn’t compensate for them much longer anyways. Little did I know that this was going to be just the beginning.

The first major blow was when my health didn’t allow me to continue working anymore. I had lived for my career. No husband, no children, just work…always work. A large piece of my identity was gone. After that, I became too sick to live alone any longer and had to move in with my mother so she could take care of me. I couldn’t cook for myself, couldn’t drive my car, couldn’t walk across the street to the store, couldn’t even do my own laundry. All I could do was lie in my bed suffering and slowly dying.

There was some fight left in me because I was still researching doctors, treatments for my disease, swallowing 50 pills a day, going to doctors’ appointments and doing everything they were telling me to do in order to stay alive but nothing seemed to be working. I was fighting with the insurance companies, fighting to keep my medical licenses, fighting to get on disability, fighting to get my student loans discharged and fighting to stay alive. Through all of that, I often asked myself, “When can I just lie here and be sick?”

Everything took effort. I needed a shower chair because I couldn’t stand up long enough to take a shower. I needed a cane and a rolling walker because I could barely make it to the bathroom which was in my bedroom. My mother fed me my meals in my bed because I couldn’t eat sitting up for over six months. My heart rate was 120 while lying in my bed and my blood pressure was 90/50. If I tried to stand up, I got dizzy enough to pass out. I spent eight months with an IV in my arm so I could run antibiotics into myself twice a day and a nurse came to my house every week to change the dressing. My weight was 97 pounds and my hair was falling out. I didn’t want to see anyone or talk to anyone. My joy was gone.

As I watched my bank accounts fade away, the fear crept in. How were we going to stay alive when the money was gone? I had been the bread winner in the house. I was supposed to take care of my mother through her retirement. I was supposed to be able to provide for all of her needs until the day that she died. What happens if I die before she does? I would lie in my bed at night with my legs cramped up, in horrible pain, my head pounding and the fear clutching at my throat because I was worried about money of all things!

Needless to say, no matter how difficult I used to think my life may have been when I was in my 20’s and just starting out, nothing could have prepared me for life with a chronic illness. I have been blessed along the way in many circumstances. I was granted disability on my first attempt so I do have some money coming in every month. I had health insurance throughout my illness on a COBRA plan and I just switched to Medicare so I never went without coverage. My student loans were discharged which was a monumental financial relief. My mother has been by my side throughout this entire horrific ordeal and without her, I would most certainly not have survived. We have moved to a cheaper apartment so we are saving some money on rent now.

Unfortunately, I am sure that my career is over and I have no idea what the future holds for me if this disease ever decides to let go of my body. I fill my days in bed researching how other women rebuilt their lives after something abruptly ended their careers and I know in my heart that it will be possible for me to start over when the time is right and I am healthy once again. I have been blessed with many other talents than what I simply went to college for so I am sure that I will find another career to be passionate about.

All that is left now is to find a way to laugh again. I have been through my hell and I am ready for an “easier time” to come again. I hope that when Chronic Lyme Disease is through with me, it will leave some joy in its wake.

 

The dreaded term: Relapse…

I went to see my doctor in Melbourne Beach a few weeks ago and I figured that his testing was not going to give me good news. I was correct in my assumptions. After pushing myself from October through January to pack up my apartment, move to our new place, attend to many personal paperwork issues that were quite serious and finally get settled into our new place, I was feeling pretty run down.

I had hoped that my increased fatigue could be controlled by just heading back to bed for a month, eating better and sticking to a strict diet/medication protocol but it simply wasn’t enough. When I saw the doctor, he did his applied kinesiology testing and everything came back positive for mixed bacteria, babesia bovis, bartonella doshiae, biofilms, mixed parasites, a fibrin (blood clotting) disorder and my spine was a mess. I had one leg shorter than the other, sciatica on the right side due to a twisted pelvis and tremors because my nervous system was still terribly damaged from the Chronic Lyme Disease. What a mess eh?

He did some chiropractic treatments that made my spine, pelvis, sciatica and leg feel significantly better. He gave me more supplements to start working on killing the bacteria that had cropped up again and basically told me it was time to head back to bed for a while. He mentioned that the nervous system was going to take the longest to heal just like anyone who, for example, sustains damage to their spinal cord~ it is the slowest to recover if it even returns to 100% at all. So, I guess that I am stuck tolerating these tremors for a while.

Long story short, I did some serious damage to myself by pushing as hard as I did over the last three months of 2013 but I really had no other choice at the time. There were things that simply had to get accomplished and life doesn’t stop just because I happen to have Chronic Lyme Disease. Now that we are settled into our new place, I will just have to stick to this new protocol of medications, diet and constant bed rest until I can overcome this flare-up of my disease. Even though there are still boxes to unpack, they are just going to have to wait for now.

We are functional in our apartment, the bedrooms, bathrooms, kitchen and major areas are set up so we can live comfortably for now. It really doesn’t matter if we still have some boxes in the corners of rooms that need to be taken care of. We will get to them when we are better off physically. Mom took a serious hit physically getting the move accomplished too so she should be resting as well. She is tending to her arthritis issues by seeing a new physician and trying some new medical protocols herself so it is time for both of us to put our health first.

The new place is really nice and I think it was a very good decision that we made to move here. Financially, it has lightened our burdens and when we pull into the complex we can honestly say that we feel like we are “home.” There are some minor issues like a yappy little dog that lives next door and a few hooligan pre-teens that irritate us on a regular basis but those are topics for other blog posts. For now, I just wanted to give you a brief update on the deterioration of my health. I will keep you posted whenever I have the energy to write.

I just wanted to write a brief post to let you know the reason for my absence. It has partly been due to the relapse but mostly due to being glued to the television or computer watching the Olympics non-stop! YAY Team USA!! Way to kick some butt over there!