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!

Olympic dreams…

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The Olympics are being watched around the world right now and the athletes who are there have dedicated their lives to their sport. For every athlete who has made it to the games, there are hundreds of athletes who spent years fighting to get there but simply never made it. Whether it was injury, lack of money or other multiple reasons that life could throw at them their journey to that ultimate podium came to an end. Watching the Olympics is both something they look forward to and something that breaks their hearts. I know because I am one of them.

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When I was 17 years old, I stepped on the Olympic ice in Lake Placid to spend two months training in figure skating during the summer between my junior and senior year of high school. I skated six hours a day, six days a week and loved every minute of it. I wanted to finish my senior year of high school up there and continue to train but my father wouldn’t allow it. I was devastated. It was the first roadblock of many that I would encounter during my skating career. The photo above is the 1980 Rink where the “Miracle on Ice” happened when the United States Hockey Team beat the USSR in the 1980 Olympics. It was a blessing to skate on such hallowed ground.

USA Rink

This was the USA Rink that was a training/warm up rink which was located right next to the 1980 Rink. We spent a lot of our time in this rink as there was often a hockey game going on in the larger 1980 Rink. These two rinks were not built when the 1932 Olympics were held in Lake Placid but they were added on when the 1980 Olympics were hosted there. The building also had another level for the 1932 Rink and a square rink called the Lussi Rink that we used to trace “figures” which is no longer done in competition. When I was training there that summer, we were still tracing figure eights at 5:30 in the morning because “figures” were still a part of Olympic competition.

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When my summer of training was over, driving out of town to go back home was heartbreaking. I finished my senior year of high school and despite getting a full scholarship to the State University where I lived, I decided to go to college in upstate NY only one hour away from Lake Placid so I could continue my training. Unfortunately, things didn’t turn out the way that I had planned. I didn’t have the financial support that I needed to continue. It can cost a figure skater up to $25,000 a year to skate at that level and I had classes to think about, plus I was required to hold a part-time job. Not to mention, the simple issue of not having a car to drive the hour to Lake Placid was a big problem. More roadblocks to my dream.

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Welcome back! After a rocky two years in my life, I made my way back to Lake Placid still intent on making a future that involved skating. I worked two jobs, lived in a small basement apartment and spent whatever I could afford on lessons and ice time. I still managed to take two classes at the local community college and looking back, I can say these were the happiest days of my life.

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Life in Lake Placid was wonderful. The town was quaint but you could get anything that you needed. There was always something going on, mostly sports related and tourists were always passing through town to reminisce about the Olympics. I met the “locals” and really started to feel like I was one of them. I even managed to hang out with some pretty famous skaters when they were in town for six weeks as they put together the Stars on Ice Tour. My skating was improving and life was great.

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As the end of the year approached, things were getting more difficult. The tourists weren’t coming as often due to the weather. Tourism was how I was making my living. I was working in restaurants and bars so I needed people if I was going to pay my bills. No tourists meant no money. The temperatures outside were below zero every night and we had to plug in our cars or else they wouldn’t start the next day. I had an unreliable car that was giving me trouble so getting to school and work was always a gamble. No money also meant no skating. I was alone up there and running out of ideas.

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As the holidays approached, I had to make a decision. The lady renting me the cute little apartment needed it for her parents so I had to get out soon, the car was dying, I was making no money, my classes were over and I didn’t have the money to survive so I certainly couldn’t skate… it was time to go home. Roadblock AGAIN. I knew that I had to leave my “heaven on earth” once again. This time, I didn’t really know if I would ever be back and I was getting too old to compete at an Olympic level anymore. The clock was ticking. Loudly.

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I packed up my stuff, walked through my rinks one more time and drove out of town with tears in my eyes. I made two more attempts to return to Lake Placid to live but they were unsuccessful. The first time, I was ready to pack up and head to NY when my father got sick and I had to move in with him for a year to take care of him. He ended up with heart issues that lasted for years which kept me in my home state until he died at the age of 57. The second time I tried to return to Lake Placid, I was a medical professional and I was offered a job at the emergency room in the local hospital. By the time I found housing for us, they had given my job away. It turns out that fate had a hand in the decision because two years later I was bedridden with Chronic Lyme Disease.

As far as my skating career was concerned. When I got “home” from Lake Placid, I tried to continue skating locally but the training was never at the level I had received in NY. I did some ice dancing in Acton, Massachusetts which was on my way home from work but I could never find a partner. I even went to Delaware for a tryout with two world famous coaches but things just never worked out. It would have cost me a fortune to train with them and I didn’t know how I would have put the roof over my head plus pay for their services. I was willing to move wherever I had to go in order to keep skating in my life but I needed financial help. Like I said before, nothing but roadblock after roadblock after roadblock.

So, these are the stories that you never hear about when you watch the Olympics. The hundreds of former athletes who spent 10-20 years of their lives trying to compete in a sport that they cared passionately about but their success just never came to fruition, despite all the effort they put into it. I still grieve for the loss of my Olympic dream and I’m sure that I always will. Although the Olympics will never be in my future, I hope to someday recover from my severe Chronic Lyme Disease so that I can lace up my skates once again and glide across the ice for enjoyment. That within itself would be worth a gold medal.

They might have a gun…

This post may bring up a lot of different emotions in my readers but I want you to understand that it is solely my opinion so please take it that way. I read the news on the computer every morning when I first wake up and I have one question that came to mind yesterday morning. What’s up with all the guns?

As I started my morning reading, there had been a guy who walked into a grocery store and shot two women that he didn’t even know. One was an employee and the other was a random shopper. The police showed up, he pointed his gun at them so they took him out. Then in Oklahoma, a 19-year-old boy shot a 19-year-old girl in the arm on Wednesday night. He continued his spree by shooting a man in the hip on Thursday afternoon while the police and ATF were looking for him. He proceeded to shoot the two ATF agents. By Thursday night, local police had located him and a chase ensued. He shot at the officers and they returned fire, killing him. All of the people the boy shot are expected to survive. Then I turned to local news and there was a story about a little girl who got caught in the crossfire of two guys having an “argument” with each other via bullets. Thankfully, she is going to be ok. Every day in my city, I wake up to a story of a shooting somewhere.

Nevermind the recent armed robberies, such as the one on CNN.com this morning involving the Arkansas State football player, Markel Owens, where two masked men forced their way into his apartment, where he was shot and killed along with his stepfather as they tried to fight them off because they wanted money and drugs. His mother was shot as well but she survived the incident. Then there was the Miss Venezuela winner who was killed on the side of the road along with her ex-husband while her 5 year old child was shot in the leg as armed robbers attacked them when their car broke down.

What the hell is going on in this country? Every single day there is a crime that involves the shooting death of someone either locally, nationally or internationally. I can never remember a time when it was this bad. It just keeps getting worse as each day passes. Road rage=shoot the guy. Poverty=rob someone. Can’t control your temper=shoot someone. Retaliation because you think you were “wronged”=pull out your gun and get your revenge. This is insane.

Now, I grew up in a household that did not have guns. I grew up in a state where guns were used for hunting animals to feed your family. I never felt the need to own a gun to protect myself while I was growing up. In my early twenties I was educated about guns and we did have two guns in the home because we lived in a very dangerous area but I was never comfortable with the fact that they were there. If I had needed to use it, I knew how.

I fully understand that people who own guns want to maintain their right to carry weapons. I am not jumping into that pool of argument in this blog. I am only saying that the actual USE of guns in this country has gone completely out of control. I don’t know what it is going to take to get people to stop randomly killing people on the street. Has human life become so useless to us that we have forgotten what pulling the trigger actually means?

There is hatred all around us. There is no more tolerance towards our fellow man/woman. There is no more compassion, patience, understanding and respect that people will not always do things the way that you want them to. People don’t talk out their differences anymore. They don’t settle issues in a civilized fashion or even with just a simple knock-down-drag-out behind the barn like the good old days, where you stood up, brushed yourself off, shook hands and it was over. Now we go to funerals and people go to jail for the rest of their lives.

Not every shooting is because someone is mentally ill and we need better psychiatric care in this country. I agree that some of the mass killings are due to unstable people. However, I still believe that we need less guns on the street. In my heart, I believe that the true basis for our problem is that people stopped caring about other people. Once we became a society where our personal well being mattered more than helping our neighbor, where our own protection mattered more than assisting someone who may be suffering the jig was up.

I read a story where a woman who had been abducted was able to escape from her captors and she ran to a house that had lights on. She was banging on the door for help and the couple inside would not let her in because they were too afraid to get personally involved. They DID pick up the phone and call 911 but they left her on the front stoop, half naked, crying and begging for help because they simply didn’t want to open the door and get involved. Some people actually applauded their actions. I was repulsed by that. Can you imagine if that was you or your daughter who just escaped a possible rape or murder, not knowing if the abductors were coming after you and the “safe house” won’t even open the door so you can get inside a locked house and hide in a closet?  When did society stop trying to protect people who desperately need help?

We call people “heroes” who lend a hand in the time of crisis when someone needs assistance. I would like to think that anyone who is in a position to help would step up and intervene if they could at the time. Gun violence is stripping away this society’s ability to trust their own instincts. We all WANT to help people in danger but at what cost? If there is a car accident, people jump right in to help. If someone is drowning, people come running to lend a hand. Even if there is a building on fire, people will risk their lives to get others out of the building.

When it comes to an altercation of any kind, man against man or a domestic violence situation, the likelihood of someone willingly getting involved is starting to dwindle simply because a gun may be involved. We are NOT winning the war against gun violence in this country. The guns are winning and it is an awful thing to see. They are stripping away our confidence to remain the caring, helpful, heroic American society that we are known to be.

These pieces of metal and the people who use them for the wrong reasons are taking away the power from the rest of society who have the good intentions to help those in need. How long are we going to let this go on?

The hunt for washer fluid…

Who says it doesn’t get cold in Florida? Yikes! It has been darn chilly down here for the past two days. I come from New Hampshire so I know what it feels like to live in a place where the thermometer reads well below zero for days on end.  I have used a hair dryer to get into my car before because the door locks were frozen. I know what it is like when you can’t wash your car in the winter and leave it parked outside because the door hinges will freeze shut. That is a typical winter in New England. You get used to it.

However, I never thought that I would spend the day searching for washer fluid that could tolerate temperatures below 32 degrees while living in Florida! Yesterday, I was on the hunt for washer fluid. We had purchased the normal blue washer fluid a few months ago without thinking that it would be of any great concern. We were running low and it was all they had at the gas station. Normally, our fluids get topped off when we have an oil change and we don’t even have to think about it but since I have gotten sick with Chronic Lyme Disease, I haven’t been driving much at all. I haven’t gotten an oil change in a long time and the poor car has been neglected. I am lucky that we remember to go out and start it every 7-10 days just so the battery won’t die!

That has actually happened once already, where I had to have the car towed to the dealership because even after AAA jump started it, the battery died again and could not be started a second time. That is a nightmare for another blog post so needless to say, I make sure to start the car on a regular basis now. Long story short… I was on the hunt for washer fluid yesterday. It took three stops to find the type that was made for cold temperatures. You would think that everyone in Florida was preparing for a blizzard or something. Every store I went to was cleaned out of washer fluid! I was stunned.

It’s kinda like what happens when we get a tropical storm warning and you go to the store looking for water, batteries, candles, weather radios and plywood. Good luck with that. There was a run on washer fluid yesterday. Geesh. I can’t imagine what would happen around here if they ever predicted an inch of snow. All hell would break loose. Criminy people, it’s just a little chilly for cripe’s sake. In a couple of days it will be back up to 70 degrees and we will be wearing our flip flops again.

So, I pulled into an Auto Zone and sure enough, they had Rain-X orange washer fluid right by the front door that would tolerate temperatures down to zero degrees. I guess that ought to do it. It was 46 degrees outside as I filled both of our cars with the washer fluid and it looks like we should be safe for the next two days of this “polar vortex.” Boy, that was a close call.

So far, so good…

We are in our new place, surrounded by boxes, but I am loving it so far. I have finally been able to get a couple days of rest and my body is thanking me. I didn’t realize just how tired I was until I finally stopped. There are bruises all over my arms from carrying boxes and miscellaneous scratches from Lord knows what but no major injuries from the move. My Mom is suffering quite a bit because she continues to unpack without stopping to rest. It’s in her nature to just keep pushing until the entire job is done so nothing I can say will make her sit down.

We have our bathrooms pretty well set up, our bedrooms are functional but still need a lot of work and the kitchen is coming along nicely thanks to Mom. I hooked up the cable in two out of three rooms, the internet is set up, the phones are working and a lot of boxes have been emptied, broken down and are outta here! I would say that for three days of work, things are moving along, especially since I haven’t been much help because I have been in bed quite a bit trying to recover. Hopefully, I will have a little bit more energy tomorrow so I can get back in the game of unpacking.

There are still a lot of things that we need in order to move forward with the unpacking. We have a storage shed but we need some metal shelving for it and some plastic bags before we can put anything in there because it is outside and not temperature controlled. We have to be careful about what we store in there given that temperatures in the summertime down here can be well over 100 degrees. We also have to protect against any bug infestations with anything that we store in that closet so we will have to wrap everything in sealable plastic bags. Better safe than sorry.

All in all, the complex seems nice. It has been relatively quiet, which is what we were looking for and we feel safe here even though we are on the first floor. I have never lived on the first floor before out of concern for personal safety but this apartment has an intrusion alarm so that is comforting. We are in a nice neighborhood anyways so I don’t feel too worried. The people that we have encountered have all been really pleasant so I think that we will be happy here.

There is one yappy dog next door but we don’t hear him too much when we are in the apartment and there is a toddler upstairs who occasionally runs across the ceiling but he isn’t too bad. So, like I was saying…so far, so good at the new apartment. Let’s hope it stays that way.

The end of an era…

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As the new year begins, it is the end of an era for me. I spent eight years in this wonderful apartment and I will miss it terribly. We packed up the last of the boxes today, vacuumed the carpets for the final time, looked out over the beautiful river view, took a lot of pictures and sadly closed the door behind us as we left with tears in our eyes.

There were lots of memories in this apartment and when I had to leave solely due to financial reasons, that makes it even more difficult. I wasn’t moving because I had a great job opportunity waiting for me in some other town or a budding romance calling me to relocate into my lover’s arms of solace. I was leaving this apartment that I cherished simply because I got sick, went on disability and can’t afford to stay here anymore. It is a very heartbreaking way to leave a home.

As the time drew closer to actually leaving, it got more and more difficult to walk away. This was the place that I moved to when I was going to begin my new career in medicine. It was the place where my beloved cat and my mother’s precious dog spent the final days of their lives with us before crossing the Rainbow Bridge. This home was where I spent three years fighting to save my own life from Chronic Lyme Disease. I was bedridden in a small room for days upon days hooked up to an IV pole, suffering in pain, crying and wondering if I would die there. Those four walls watched me face my own mortality. I truly believed at times that I would leave that apartment on a coroner’s stretcher. I planned my funeral in that small bedroom.

There were also good times that happened in that apartment. Many holidays were celebrated there before I got sick. Numerous Christmas mornings were spent opening presents around the tree with my mother, Sundays watching football games and yelling at the television screen, community cookouts by the pool or the dock, countless fireworks displays from downtown which were just around the corner, Mom walking the dog that everyone knew in the park because he ”hippity-hopped” when he walked and laughing with our friends whenever they would come to visit.

We enjoyed the balcony overlooking the river as much as possible and I can’t even begin to count the photographs that I have taken of that gorgeous view. I even remember getting up at 4:30 in the morning with my mother to watch a space shuttle take off as we stood on the balcony in our pajamas, trying to photograph the bright orange glow in the distance. It is the river that I will miss the most. For a photographer, it was a canvas that was always changing. I have shot lightning bolts that could take your breath away, beautiful sunrises and sunsets, the angry river during tropical storms, people enjoying quiet mornings fishing on a placid sheet of glass, and rescues in progress. I have lived on a body of water for the past fifteen years and it will be hard to give that up now.

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This was our final sunset as we were leaving tonight. I am sure that if we had stayed for another 30 minutes, the clouds would have parted and the sky would have lit up with the most electrifying shades of pink and red like it always does. We just didn’t have the time or the heart to stay. It was already too heartbreaking to leave. The decision had been made and it was time to go. The car was packed, the girls were waiting for us in the office to go down and turn in our keys and our new life was waiting for us.

The place has already been rented. Apparently, there was a waiting list for our apartment and the new tenants had been waiting for six months. They are a transfer from another apartment in the complex. It doesn’t surprise me. After living there for eight years, surviving three severe tropical storms (I’m sure the new tenants don’t realize how scary it is to live in that apartment during a tropical storm!), changing management companies three times, living through construction where they wrapped the entire outer surface of the building in scaffolding for eighteen months, then wrapping the inside of our apartment in plastic for another twelve months…management probably thought that we would NEVER leave! The truth is, we never intended to leave.

Until Chronic Lyme Disease changed all of that.

So, here we are, three hours into the year 2014. We are finally moved into our cheaper apartment at a different complex, surrounded by boxes which will take us a long time to sort through and all I am thinking tonight is, “Thank God that 2013 is over.” I am watching everyone celebrate the new year on television as they talk about resolutions and all the wonderful things that happened to them in 2013. Forgive me but it all seems so trivial.

I am finding it very difficult to be cheerful and positive. The best that I can muster is to be hopeful. I am holding out hope that 2014 will be a little bit kinder to us than last year. In 2013, I spent seven months on home IVs with a PICC line in my left upper arm, bedridden, homebound and nearly died a couple of times. My poor mother was recovering from a terrible knee replacement while trying to be a full time caregiver to me. Her beloved dog passed away and we came to the realization that we could no longer afford to stay in our home. We began a two month search for a new place to live, began packing and then spent eight days moving, including on Christmas Day and on New Years. This was a year that I am very glad to have behind us.

Outside my bedroom window right now people are coming home from whatever party they went to or they are starting their cars to head home from the party they were at here in our complex. I sincerely hope that they had a nice time tonight and that they have things in their lives to celebrate. My wish is that they drive safely and no one has made the irresponsible decision to get behind the wheel after drinking. People who have good health often take for granted, when things are going well for them, that it can all end in an instant. I never imagined that the bite of a tick fourteen years ago would alter my life so severely.

Today I had to say goodbye to one more thing that I cherished so much, my home on the river. Chronic Lyme Disease first took my health which led to losing my career, my income, my ballroom dancing, my figure skating, my competitive billiards, a lot of my friends, my ability to take care of my mother in her golden years, my retirement savings, and now my beloved apartment. I am getting used to the “losses” in my life but it is never easy.

What I have to do now is figure out what I am still capable of doing, even though I am sick. Leaving that apartment may have been the end of an era but it was not the end of my life. I will find a way to make a new life with what I still have in my arsenal. I believe that there was a reason it was time to go, I just don’t know what that reason is right now. The next step is to rest a little bit to recover from the move and then I will start unpacking boxes. Maybe the answer will lie in the bottom of one of them.

Wherever the road of Chronic Lyme Disease takes me in 2014, I simply hope that it contains less suffering, pain and risk of death than it did in 2013. I am not sure that we can handle another year like that again. My best to all of you out there who are following my blog and I hope that your 2014 is filled with blessings. Happy New Year to you!

Closing the chapter…

IMG_2312

The van may not look like much but boy did it save my life today! We woke up for our final day of moving our small household goods and it was POURING. I couldn’t believe it. All week, they had been threatening us with bad weather and it never came. We had sun most of the week with cool temperatures so it had been a glorious week of moving with open pick-up trucks and no battling Mother Nature. Today it was horrible… overcast, drizzling at first and then the skies opened up to a downpour.

I was able to move the van down to the third floor of our parking garage and carry our belongings down one flight (or take the elevator down) to load them into the truck under cover so nothing would get wet. The inside of the van was a little damp so we had to line it with blankets but otherwise, we seemed to do ok and everything made it to the new apartment without any damage.

When we got there, it was more of a mad dash into the apartment because there is no garage but I had backed the van as close to the front door as possible. I just covered the items with blankets as I carried them in and thankfully, everything seemed to make it inside without getting wet (except me of course). I really can’t complain because after an entire week of moving, we only had one day of inclement weather to deal with. It was a blessing.

We returned the van to the company and finally, our work is done. All that is left at the apartment will be done by the professional movers in the morning. They will come to move all of the heavy furniture and then this process will nearly be over. We will have some last minute items to clear out like the refrigerator/freezer, personal bathroom items because we have still been living here until now, then we will do a cursory cleaning because they are totally rehabbing this place after we leave and then we are outta here!!

All of these apartments are being updated with stainless steel appliances, new carpeting, new track lights, new faucets, etc and ours is the last one to undergo the update. We have lived here for so long (eight years) that we are the final holdout for the renovation. Therefore, they told us that we didn’t have to do a major cleaning when we leave. That is one great relief on our part. We have done enough work this week to last a lifetime.

So, here I am writing my final blog tonight from the apartment that I have lived in for a very long time. It is kind of melancholy actually. I moved into this apartment as a new medical graduate anxious to start my career in a new state where I didn’t know a soul. I came here to create a new life for myself that was brimming with possibilities for a positive future. Over these past eight years, I had two major career setbacks and finally the worst setback of all, I took a major blow to my health. Thankfully during this time, my mother moved down here to be closer to me.

I lost everything in my life due to Chronic Lyme Disease. First I lost my career, then the money started to fade away as the medical treatments to fight this disease were not covered by insurance, then I lost my apartment because I had to move in with my mother so she could be my primary caretaker, then I had to go on disability, then I almost lost my life twice. I ended up on home IV therapy for months, bedridden, homebound for almost a year, unable to drive and I could barely walk to my own bathroom in my room. I had to eat meals made by my mother lying down in my bed for five months because standing up meant passing out.

I spent almost a full year in one room of this apartment, my bedroom, while I watched my body wither away. Then my closest companion, my beloved cat, who had spent two years in bed with me passed away at the age of 21. The loss was profound. A year later, my mother’s beloved dog passed away. There are many memories in this apartment that we are leaving behind when we will finally close that door behind us on December 31st.

I came here with such high hopes for a positive future. It was to be the beginning of a new life for me. A new career that I had worked so hard to obtain after spending two grueling years obtaining a master’s degree and moving 1200 miles down here away from the home that I always knew. I had started to build a life here with competitive ballroom dancing, a group of friends that I made through competitive billiards which took me to Las Vegas twice to compete in the National Tournament of Champions, great new friends that I began to build a life with and then I got sick and my world came to a screeching halt.

Leaving this apartment is bittersweet now. It originally held such promise for me. It was meant to be a joyful new start in my life but instead it has turned into a prison of illness and suffering. When I lie in this bedroom now all I remember is the IV pole with the medications running into my failing body, the hundreds of pills I have swallowed, the tears I have shed due to the overwhelming pain of Chronic Lyme Disease, the disappointment of realizing that my career is over, the endless nights of insomnia, the fear of death approaching when I was so ill, the dependency upon others for even my most basic needs but most of all, the thought that this is all the rest of my life will ever be. These four walls is all that I will ever have for the rest of my life because I will never get better.

I was originally very sad to be leaving this apartment because it is a beautiful place that overlooks the river, then I realized that I haven’t been well enough for the past two years to even go sit out on the balcony for any length of time to relax and look out at the river. I have not spent any time truly enjoying what this apartment has to offer thanks to my disease so why should I feel so sad to be leaving it? Leaving here may be the best thing for my recovery. If I can get out of this bedroom that has been my prison infirmary for the past 2-3 years, maybe I can actually begin a path to getting better.

I need to close the chapter of what this apartment used to mean to me, what it was supposed to be when I first moved down here and how it turned into a complete failure in my eyes. I need to start fresh in a new place, accept what my life is now with this terrible illness and see what I am still capable of doing within my limitations. Starting over in a new apartment may be just the catalyst that I need to begin rebuilding my life in an entirely new direction.

When I close that door for the last time on December 31st and turn in those keys at the office, I think that I will feel like a great burden has been lifted off my shoulders. It will be the closing of a chapter that desperately needs to be put behind me and I will head towards a new apartment where I will begin my new life as a woman that has many talents, who also happens to be living with Chronic Lyme Disease.

Six days of insanity…

They always say that a picture is worth a thousand words so I have decided to post a photo blog of our last six days. Between myself and my mother, seven wonderful friends, pick-up trucks, two days with a cargo van, one day with a U-Haul box towed on the back of a truck, a Toyota Corolla, a Volvo, dollies, rolling carts and a lot of sweat and muscle…we have managed to move the majority of our two bedroom apartment that we have lived in for eight years.

This has been no small feat when you consider that my mother has severe arthritis, is over the age of 65 and had a bad knee replacement last year that still incapacitates her to this day. It also has been a monumental task because I am suffering from a severe case of Chronic Lyme Disease that kept me bedridden from January until August this year with a PICC line in my arm for most of the year receiving IV antibiotics at home. I wasn’t even able to drive a car until October of this year and only for small trips in the neighborhood.

We really didn’t know how we were going to accomplish this move in the first place. Our friends have been simply AMAZING and we don’t know how we will ever thank them enough for all that they have done. In years past, every time that people have said, “Oh you’re moving eh? We will help you!” We have only had a few people who have turned up on their promised days and stood by our side through thick and thin to cart all of our junk to our new home. We have never forgotten their loyalty.

This year, our former “tried and true” moving friends had traveled out of town for the Christmas holiday so we really didn’t know how we were going to make this move happen. We were filled with utter trepidation that we would be let down this year and this move was going to blow up in our faces. We were so wrong! This new crew has done more than we could have ever imagined and we are beyond grateful. Here are some photos to show you what has transpired over the past six days.

When you are down and out, and you think that you are living a life of suffering all alone, never forget that there ARE people that are struggling through your path right beside you. Our eyes have been opened to the fact that our circle of friends who love us to the core is much bigger than we ever expected. Enjoy the photos…

IMG_2306    My bedroom in shambles but still functional.

IMG_2304  Mom “camping” on the aerobed in her room.

IMG_2310  The packed cargo van ready for a trip.

IMG_2314  There is a kitchen under all of that crap!

IMG_2319  Climbing into that bed would be so nice.

IMG_2330  Hope I don’t need a shower til I can unpack first!

IMG_2322  Ordering take-out for a while may be necessary.

IMG_2321  This is where the kitchen table belongs.

So, the majority of the small stuff is moved to the new place and the only items left at the old apartment is the large furniture and the cable television because dag-nabbit we refuse to miss the Patriots football game tomorrow! When I started making the plans to do this move, I asked my mother where she wanted to watch the game on Sunday so I could determine when to move the cable. She insisted that we leave it where it was, at the old apartment, so she wouldn’t miss her football game. Prioties people, priorities!

So, the professional moving company is coming on Monday to move all of the large furniture because we didn’t think it was fair to ask our friends to hurt themselves lifting all of the super heavy items. They will come with all of their thick blankets and plastic wrapping to safely transport the couch, recliner, dressers, loveseat (which has been my “bed” for the past few weeks), the large lateral filing cabinet, the curio cabinet that stores my mother’s snow globe collection, the washer and dryer, and any other miscellaneous items that we may have forgotten at that time. We have used them before so we have the ultimate trust that they will do a good job with our remaining items.

The end is near for our major move which has been in the works for the past few months and I cannot be more grateful at this point. Each time I make a trip to the new apartment I am more and more pleased with our decision to move to this complex. It is quiet, safe, clean, the tenants we have met all seem to be pleasant to us when we pull in with our large vehicles blocking their access to the roads and they have welcomed us with smiles and abundant patience. I feel like this is becoming our new home and it seems like we will be happy here.

I only hope that as we begin to unpack our boxes in this new home that we find our decision has been a good one. It was so heart breaking to leave our last apartment where we lived for eight years and had a beautiful view of the St. John’s River but when it became so painful to write that exorbitant rent check every month and we wondered if we would have to start visiting a food pantry just so we could afford our trips to the pharmacy for our medications every month, the Lord was sending us a sign that a change was necessary.

This has been an eye-opening experience that through the loving help of friends which we never expected, taking a chance on a move that we were so hesitant to make and trusting in the direction of the Lord…change can be a good thing. Something that we dreaded so desperately is turning out to be one of the best things we could have ever done in our lives. Now, if the Patriots win the football game tomorrow, the professional movers don’t break anything on Monday and we are able to finish everything on Tuesday so we can turn our keys in to the old apartment to start our life at the new apartment, then 2014 may be the beginning of a wonderful future for this little family of ours. We are looking forward to some good times for a change. We have certainly suffered enough through 2013. I will keep you posted!