Progress

I see it's been a while since my last post. I guess it means I'm feeling better, doing more away from the computer. Summer is always a busy time. My children are home and there are lots of distractions. I'm happy to say that I feel the good days are starting to outweigh the bad, as I continue along with the same protocol with my current LLMD. I am still taking large doses of antibiotics on a daily basis, and at my last appointment, an antimalarial was added in (again). The theory in Lyme treatment suggests that remaining symptoms after long term treatment, are probably due to Babesia still hovering around. Babesia is a malaria like disease treated with different meds, which overlap with the antibiotics.

Fatique is abundant later in the day, sometimes insomnia, some new joint pain has arisen, and every few weeks a herxheimer reaction kicks in causing the cranial nerve to go full throttle, body aches, head and neck pressure which lands me in bed for a day, but seems to pass after a couple of days.

I have been doing Yoga a few times a week in addition to walking and doing some weight work. I really am a Yoga believer now. I think it's good for the human body in a myriad of ways.

I had an IV Glutathione infusion yesterday at the doctor's office. I met an older couple in the waiting room. Their 36 year old daughter was in with the doctor. It was her first appt. I've met older parents like this before in this journey. The daughter was married and her husband is leaving her because she "isn't able to do anything anymore". Her parents told me she has been sick for at least 4 years, was a teacher, now on disability, lives in the south with her dog, while they (her parents) live here, in NY. She had flown up for this appt. They asked about my situation as we waited. I explained my story, which is much like the other stories of patients they had been talking to in the waiting area. Lyme patients, who go misdiagnosed pretty much all have the same plight. Isolation, financial strain, and above all the slap in the face Chronic Lyme Disease is not recognized by the mainstream medical community, and has hence allowed them to walk around getting sicker and sicker by the day.

This family was in a state of shock, heartbroken and worried about their daughter, anxious to hear that there might be hope for her. When she came out of the inner office I saw a reflection of myself 3 years ago. She was grey, and thin. I could see she was having trouble with light sensivity, and cognitive problems as she attempted to check out, and pay. I saw her credit card slide across the counter to the receptioninst, and thought to myself...."well she is on board the train now..get ready to see that credit card balance go up in a serious way." She was shakey and worn out, and I knew what it felt like to be on the other side of that face. It's a feeling I don't think I'll ever forget.

I spoke with her for a little while, and tried to assure her that this doctor is probably the best at treating this disease, and she is in good hands. She was thankful and relieved to feel some comfort, as were her parents, desperate to help their daughter get better.

Today I am grateful, that I have come as far as I have in the treatment process. I was that young lady not long ago, hoping that there was a doctor out there who could help me. Trying to remain positive as my life was falling apart around me. In many ways, wishing my life would be over, so the rest of my family could move on.

I do feel there is hope for me now. I'm sure that I'll be treating this the rest of my life....as I have just had it too long. But that's ok. As long as I can function and have some sort of pleasure in life, I consider myself one of the lucky ones.

The other patient in the waiting room had been in treatment for 8 years, and lost all ablity to use his left arm. 30 years old and Lyme Disease has damaged so much nerve in his arm he may never be able to use it again.

The insanity of this disease just boggles the mind.

The Beach

Just before I got sick, my husband and I purchased a place at the Delaware shore. We had vacationed here for years. Our children were really young when we started coming here. We were hooked on the beautifully clean uncrowded beaches, the wholesome family environment and the warm water of the Atlantic Ocean. I have been riding the waves here for a long time. Owning a place at the beach was a dream come true for us. We saw ourselves retiring here.

Now I don't know. We may not be able to keep our place at the beach. Without my salary we may lose it. But I try not to think about that too much right now.

My trusty dog Daphne and I arrived here a week ago. The beach has always been a place of solace for me. I love to watch the waves ebb and flow. I feel like I am part of nature here. The way the ocean cleans itself, takes care of itself. The dolphins go by looking for fish, and birds dive bomb from the sky, straight down into the water to claim their dinner. The gulls walk close to me when I am sitting on the sand. Of course, they too look for a snack or their dinner, but it amazes me that they will come within 1 foot of me and not be afraid. I love the feeling of the sand under my feet and the warmth of the sun on my face. I love to watch the surfers and the children creating sand castles. I love the salt water and riding the waves in the ocean. I feel a sense of renewal here. I am still sick, but I feel more a part of life here. Perhaps I should have always lived here; maybe this is where I have always belonged. Maybe I wouldn't have gotten sick had I lived here.

I've told my family that if anything should happen to me, I want my ashes to be sprinkled at one of my favorite places on the beach here. This is where I want to be. Near the ocean, near the dolphins and birds....close to nature and not afraid.

For now, I am sticking to my same treatment protocol. I drive to a hospital once a week to have my IV Glutathione infusion. I keep taking all the drugs hoping with each passing day, I get one day closer to the last day. I still have good days and bad days.....some mornings are better than afternoons....some evenings better than the daytime. There is no rhyme, reason or predictability to my days.

Right now the one constant, is that the ocean is there everyday. I am still taking it one day at a time, never knowing what tomorrow will bring.

So They Say It's Your Birthday

So this nightmare started when I was 52. Today I am 55, and as my sister reminded me, just 5 years away from that coveted senior citizen discount. Many days I feel 65.

Am I better? Yes, I guess I am...much more higher functioning than the past three birthdays. My doctor ordered IV Glutathione which is used for Parkinson's patients to clear toxins. They say the people with Parkinson's feel an almost immediate decrease in symptoms....less brain fog, better muscle and nerve function. For me it really seems to have helped clear the neurotoxins from my system, including my constant Nemesis, my left cranial nerve. I was hesitant to start doing Glutathione, as it's one more thing I am putting in my body.

I am a Chronic Lyme Disease Patient. Here is what I currently take everyday in order to be able to function, including typing this blog.

Doryx (Time Released Doxycycline) 300mg/day
Clarimycin (Biaxin) 1000mg/day
IV Glutathione 2 grams/push 1x a week
Nystatin - 6 pills a day
Estradiol
Prometrim
Magnesium 500mg/day
VSL#3 Probiotic 2x/day
Theralac Probiotic 2x/day
S. Boulardi Probiotic 2x/day
CoQ10 2x/day
B12 Shots 2x week
B6 1x/day
Lunesta as needed for sleep
Advil and Tylenol for pain
Vicoprofen as needed for pain
Daily Multivitamin packet (5 pills)

It's a heavy load and alot to remember to take; much of it has to be spaced out around the antibiotics. This is a pretty typical regimen for someone like me. Before getting sick I took a vitamin and maybe an Advil from time to time. This has taken some getting used to.

So today is a beautiful day. I share my birthday with Earth Day and have to wonder about the huge contradiction in all of that. But I am grateful I can go outside for a walk, and enjoy the sunshine and fresh air and go to dinner with my family. Last year, I spent my birthday in bed.

Easter

The Biaxin and Doryx combo must be working. I have had 3 really good days, and today seems as if I might be good as well. If you read this blog, you know I tend to keep track of how many calendar holidays I have felt so sick, I couldn't and didn't even want to think about it.

Holidays have become just another day to get through, trying to push through the symptoms so my family can have their holidays. Most times I just can't wait until it's time to go to bed so I can shut my eyes, and just forget about it until the next morning when I wake up to the symptoms all over again.

This has been a life changing experience for me. I hope I am getting better, and can stay better. I have relapsed before, and know the incidence of another relapse is very high once antibiotics are removed from the equation.

But today is another beautiful sunny day here in the northeast. I will, as I have always done in these last 3 years, take each day as it comes, have no expectations, accept disappointment and try to do what I can do today.

Happy Easter. Happy Spring.

The Herx, Hopelessness and Ben Stiller

I feel horrible today. It started 2 days ago....the herx from the change in meds. I feel like I have the flu......times 10. Everything aches, pressure in my head, dizzy; all I want to do is lie down. It's after 3PM and I am just really getting up for the day. My back feels like I went 10 rounds in a boxing ring.

I look at myself in the mirror and I see the age and the illness today. On days like this I can't go out, and I would never let anyone come over. Would anyone let people come over when they felt like they had the flu?

These are they days when I feel like it's hopeless and I feel like God has abandoned people who are sick like me with this disease; cast us off like lepers, left to figure it out on our own.

I saw Ben Stiller on Letterman the other night. He has Lyme Disease, and actually he doesn't look so good. Older. Sadly, in the Lyme World when a celebrity or famous person is diagnosed with Lyme, it's almost a celebration. Maybe THIS time the medical establishment will listen.

Sell It On Ebay

Times are getting tougher here. I definitely thought I would be back to work by now, but sadly it isn't so. If we thought things were rough last year financially, this year gives "rough" a whole new meaning.

I started to sell my photography equipment on Ebay. I have no choice. It's been sitting unused, which isn't good for the electronics. I am now completely positive that my energy level will never be high enough to allow me to use a full studio of equipment again. So it's for sale on Ebay.

Last week we sold a lighting system and a backdrop and stands. This week we sold a reflector system and I have another backdrop and stand set for sale. My husband has packaged everything up as the payments come through on Paypal. Systematically, every few days I have dropped off box after box filled with my past life at the UPS shipping center and watched it slide across the metal table and be put on the stack of other outgoing boxes. Boxes with pieces of my life to be shipped off to some stranger far away, who will never know what these items meant to me and my life.....and how the loss of them represents the bigger loss Lyme Disease has brought to my life.

I guess it's time to say goodbye. It saddens me, however. What I used to be able to do in a day, now takes a week sometimes. I have reached a level of acceptance although I have fought it tooth and nail. I think half the battle with any disease is accepting the hand you have been dealt without ever giving up. I am trying.

But now the important thing is putting some money from these ebay sales in our bank account and paying bills. At least I feel I am doing my share that way, by cashing in on my equipment.

After selling the rest of my equipment I am not sure what I could sell. My jewelry, furniture? Certainly no one would want my blood.

The New Protocol

Last Tuesday's LLMD visit proved interesting. I knew it was coming. I suffer with this Cranial Nerve Pain and Migraine headache situation continually. The PA told me it can no longer be danced around and has to be addressed head on. Head on to me speaks clearly of excruiating pain as the bacteria is killed off and the neurotoxins flare. She is talking 5 months of double intracellular antibiotic treatment. In the almost 3 years of this nightmare, I have come to know that 5 months really means more like 8.

My new Protocol includes:

Factive 5 days on/off
Minocycline 50 mg every other day
Valium as needed
Vicobrofen (a pain killer) as neeeded
Xanax as needed
Nystain
Diflucan
My usual slew of vitamins, supplements and probiotics I take each day.

So this reads to me like a long time in the hole. I am adjusting my mindset, knowing that it won't be pleasant but probably necessary to dig out whatever form of Lyme bacteria has colonized in my left cranial nerve. My worst fear is that if left untreated it will take my sight.

I pray that after 3 years of blasting my body and organs with antibiotics it will be able to go this round. I hope this is the last round but sadly based on what I know, this is going to be a life long battle for me. I still see my final days confined to a wheel chair, racked with pain.

And so it goes. The nightmare of Lyme Disease. Spring is coming and so are the ticks. It saddens me to know that we still don't know anymore about this disease than we did 3 years ago, and that more and more people will be bitten this spring, summer and fall. More children will be forced out of school, more people will be unable to work, more people will lose all they worked for to a disease that our nation refuses to understand. It's under these circumstances, for the third year, I gather my bravery, my hope faith, and desire to be well and face this new, challenging treatment.

Wish me luck.

Cranial Nerve Pain, The Icepick And The Headache

It usually starts as a flutter in my left temple. Then I can feel the endings of my left Cranial Nerve start to expand, and along with that comes the steady feeling of increased pain. Then there is the icepick. Like a deliberate walloping blow to my left temple, but the icepick isn't removed. It's as though it's stuck. Pain starts to move around to the front of my forehead like someone has my head in a vice. I feel nerve pain and nerve sensations start to move down my neck and across the left side of my face. There is dizziness and light sensitivity.

I am completely debilitated until this disease decides to remove the icepick. It can take one day, or it can take 5. I can't think about anything else, I am rendered useless.

I generally start to load my self up with 3 Advil and 1 Tylenol as soon as I feel the flutter. This is a headache that won't, and in 2 and a half years has never gone away on its' own. I have to lay down. If after 2 rounds of the Advil/Tylenol combo, it hasn't started to subside, I take a Maxalt. Maxalt is a Migraine remedy that works effectively but it is a benzo and will take me off the map for at least a day. Sometimes I have to take 2 rounds of Maxalt, 4 hours apart. If that happens I am totally flattened.

When I was first diagnosed with Lyme and co infections my overall symptom list included about 35 different symptoms. Fortunately, over time ever so slowly it has dwindled down to about 8, but the one which currently plagues me the most is the Cranial Nerve pain and headaches which I describe.

This is excruciating pain, that can sometimes go on for days. It is exhausting and unrelenting once it starts.

What causes it? My LLMD says its the flare of the neurotoxin from the Lyme bacteria (in this case mainly Bartonella) as they fight back when antibiotics attack them. I believe it to be true, because these episodes are certainly worse, when an antibiotic rotation is first started.

This pain recedes as an ocean wave recedes. Pulling back over the course of another 18 hours or so. It generally happens by me sleeping them off. There is residual tenderness in my left temple and forehead that will take another 2 days to go away. I feel that the worst is over, but then there is always a chance I will feel the flutter in my temple again, at any time and the cycle will start all over again.

Unconditional Love

Daphne is my Yellow Labrador Retriever. If you know me, you know her. She is one of a kind, and I am dedicating this post to her.

Daphne has been my tireless companion, nurse and full time source of strength throughout this illness. She has not missed one day of being by my side, on both good days and bad. She is patient and kind and never asks for a thing in exchange for her loyalty and loving spirit. She has a sweet, warm bubbly personality. Even on my worst days when I thought I was surely dieing, her playful smile brought a smile to my face. I have never been alone in this fight, even when the house is empty, she is always, inevitably waiting for me each morning and ready to see me off to bed at night.

Unless you have struggled with Chronic Lyme Disease you can't know the anguish, the pain and emotional toll it takes. Daphne was diagnosed with Lyme at around age 6. She has had a few rounds of Doxycycline in her life. She knows the pain, the suffering and anguish I feel. She is one the few around me who really know.

I don't think I could have made through some of my darkest days without her. The sound of her paws on the floor, the clink of her collar, her yawns and her snoring were the familiar sounds that assured me I was never really been alone. Funny how animals instinctively know when people are sick. On the really bad days, Daphne was glued to my side, laying as close to the bed or couch as she could, her head popping up from time to time to check on me. She has been my friend when I've had no friends, my family when my family has been too busy, or scared to talk about my illness. She has been my wingman when I was alone and afraid to start a new medication, not knowing how it might effect me. I was always comforted knowing if a certain day were my last, she would stay with me until my husband came home to find me.

I love Daphne. When I started this battle she was almost 10 years old. In lab years, that's adolescence. Now she is 12 and a half. She no longer plays ball or runs for the stick. She doesn't run after squirrels or deer in our yard. She is content to watch from afar and observe as many older folks do. Her face is white with age, and she has arthritis in her legs.

I know that at her age, every day is a gift. So on this Valentine's Day, even though I have other Valentines, I feel in my heart I must celebrate Daphne in this blog.

To love an animal is a love like no other. One of the gifts of my life, was the day we chose the smallest female lab puppy of the litter. I knew she needed me, but I never realized how much I would need her.

Waiting For My Brain To Make The Switch

My fifth grade teacher had been in horribly tragic accident the year before I was in his class. He and his teenage sons were fishing off of a railroad trestle when a train came through (they were called bee-liners at the time - very fast) and killed two of his sons and took his right arm off right above the elbow. My mother was a teacher in this district so I remember hearing the play by play of the accident, seeing the pictures on the cover of the newspaper, and feeling quite scared when I found out he was to be my teacher.

By today's standards a teacher under the same circumstances would probably not be allowed back in the classroom, until much more time had passed which included years of grieving and therapy. He was man filled with frustration and anger, and rightly shouldn't have been standing at the head of a classroom of 10-11 year olds.

He struggled making the transition from right handedness to left handedness. It was hard to watch. Sometimes he wore his prosthesis, which I always called "the hook". It frightened me when he wore it and it frightened more when he didn't wear it and the stump of his arm, dangled below his sleeve. He wasn't a kind man. He was there to do a job to support what was left of his family and that was it. I almost never asked questions, but I used to watch him closely has he struggled to tie his shoes, write on the chalkboard, write with a pen or use a stapler. If I learned anything that year, it was how we take for granted the innate way our bodies function when everything is working together and nothing is damaged.

One day this teacher was having a pretty good day I guess. It was in the spring so it had been a while since his accident and the year was coming to a close. One of my braver classmates asked Mr. Lynch, what his arm felt like. I remember shuddering, wondering how Mr. Lynch would take that question. I remember him saying..."It's there, but it's not there. My brain is trying to switch." That scene stuck with me.

Recently I had a SPECT Scan of my brain. The scan showed that I have left frontal damage from Lyme Disease. The frontal lobe houses creative ability among other functions. As some of you know, prior to getting sick I owned a thriving photography business. I loved that business and nurtured it from its inception 20 years ago. It was like my third child. But it's gone now. It became imminently clear a year into Lyme Treatment that I could not longer work at it and give it the attention it rightfully deserved. I turned it over to my long colleague who had worked for me for years.

Many people ask me if I miss my business. Of course, I miss the money...for a Lyme patient that goes unsaid. But interestingly I don't miss the creative side. I don't see the visual images in my head anymore, which would lead me to pick up the camera. It's as if there is a piece of my thought process which is missing. The experts say the the brain can repair itself. My personal feeling is that the brain learns to rely on other areas for certain functions, if an area is damaged. It compensates.

So in some ways I understand what Mr. Lynch meant when he said, "It's there but it isn't there. My brain is trying to switch." I wonder what happens in the brain, and if my brain will let me see the images again. I am waiting for my brain to make the switch.

The New Year

I've gotten a couple of emails wondering why my posts have slowed down. The holidays and New Year brought lots to do. Not alot of time to think, just lots to do

I saw my LLMD a week ago Monday. She started antibiotics again, after having me off them for two weeks. I felt better off the meds, but still had lingering symptoms, so it's on again we go. The rule of thumb is that you must be 2 months symptom free before they will stop treatment. With a myriad of diseases and symptoms, getting to a symptom free zone is alot tougher than you would imagine. I think it's possibly time for me to switch to some herbals for a while. I'm going to call today and see if I can switch to something else. It's been 2 and a half years of these toxic meds running through my bloodstream. I need a longer break.

I am eternally hopeful that there truly is a way out of this disease. Sometimes I wonder. I lay in bed and my mind wanders, wondering if this is really an incurable disease, and if it is, maybe I'll just get to a certain level of wellness and that will be it. Unable to go any further. I guess that would be alright with me. On and off low doses of antibiotics for the rest of my days. Lyme Patients do live that way.

Sometimes I feel that since I was diagnosed, a timer has been set on my life. A timer of wellness. Something like, "you have 10 years of possible semi-decent health before your body succumbs and you can't be treated, so do as much as you can." I wonder if it's all that simple. There are so many things I would like to do. If the moon and the stars aligned themselves, and we had the money and I felt well enough....I would certainly do them. How does it work with people who have worked hard, whose children have flown the nest and they travel and do everything they always wanted? Is that a fairy tale? Is it possible for people to really do all they have looked forward to?

I think about people I've known who reach this point in their lives and either one of the spouses dies, or their marriage ends in divorce. Gone are the plans. I once worked with a lady who was married for 40 years. She and her husband retired and on the first day of her husband's retirement, he had a heart attack and died. She was completely devastated. They had all kinds of plans and as the days ticked down to retirement, she had all kinds of brochures on her desk of places they were going to visit. Israel, France, and I believe a cruise somewhere. She never suspected her grand plan to be altered. She was a devout Catholic. I remember she was completely shaken after her husband's death and couldn't understand why God did this to her. God, my friends is an entirely other post.

I guess it unreasonable to think life is that easy. Seems that all families have something, and we never know what is in store.

The third New Year being sick, has again, given me a chance for pause. The Christmas decorations are put away, the house is clean and uncluttered again. The distractions are gone, the kids are gone, and it's me alone again trying to figure out this disease. My husband continues to work hard as we try to stay ahead of our bills. We are losing ground, there is no question. I worry about the stress he is under. This was never part of our grand plan. Never.

Change

The thing about being sick for a long time, is that the world around you doesn't stop. People still live in forward motion, while the sick person is at a stand still. It's like being plucked from the earth and taken off to some other place where you hang out in limbo hopes of returning to good health. Parents and children grow older and along with that growth are positives and negatives. The older children become, the more difficult the problems and consequences. Aging parents are more dependent, their minds become slower and duller. The house is older, and things need replacement, the dog is older and more feeble.

I hate to jinx myself, but I think my new LLMD is making a difference. I was dreading the holidays, imagining myself, laying on the couch for the 3rd year, watching my family do all the food shopping and preparation of dinners. I envisioned myself making my way to the dinner table, again, my head pounding and feeling like I had the flu; my muscles aching and the room spinning. I am not symptom free by any stretch of the imagination, but I wasn't on the couch this Christmas, I was able to help in dinner preps and be a part of the laughter and even a few arguments. I even made it to church on Christmas Eve. I haven't been for the last 2 Christmases, so I see it as a mile stone. I took my afternoon naps, which refueled me enough to make through the day.

I feel like I am waking up from a coma. Everything seems different to me. The lessons I have learned about myself, my relationships, my family, the world as I now see it are immeasurable. I feel like I am figuring it out all over again. Perhaps I never had it figured out to begin with.

For years I have been meeting a dear friend at a restaurant a little over an hour away. We used to meet once maybe twice a year for our chat sessions. She used to be my neighbor and she has grown into one of my dearest and most cherished friends. Through out this illness she has sincerely tried to keep up with the constant drug changes and list of ever changing symptoms as the bacteria in my bloodstream is being killed off. I haven't been able to meet her at our designated location in over 2 years.

Well, yesterday I was able to meet her! We put together a last minute plan to meet and I did it. We had so much to talk about....so much to confide in each other, catching up on our kids, our husbands, and how life is changing for us all. The lovely people at the restaurant we frequent for these get togethers, allowed us to sit in the booth for 7 hours and talk and laugh and be ourselves. The time flew by. I didn't have to leave early, and I was able to make the drive home....tired but feeling fulfilled.

I actually felt like my old self in many ways, but also changed; older....more worn out by the disease, and the realizations of the positive and negative changes in the growth of my children, the duller mind and more arthritic ravashes of my aging mother, the house is older, needs more repairs and the dog sleeps most of the day at over age 12; life is moving forward for us.

I hope I can stay well enough to enjoy the ride.

Approaching Christmas, The American Dream And Planning For A Rainy Day

This Christmas will be far different than any other Christmas before. There will be no gifts for the first time ever. I haven't worked in over 2 years. We went from being a 2 income family to a 1 income family inside of 4 months. We went from living the American Dream, to living the American Nightmare. Fortunately my husband makes a decent salary and we have been able to stay ahead of our bills, college tuitions and lease car payments. His health is suffering due to the stress, but we are still living in our house and able to keep ahead of it. Although I do feel my health is improving with my new LLMD, I still cannot make any commitments given I am still on heavy doses of antibiotics in order to keep the Lyme and co-infections at bay.

There are no frills here. We never go out to eat anymore. We haven't bought any new clothes for a very long time. We are probably going to have to sell our house, if this real estate market would start to turn itself around; but we might not be able to wait that long. We need a new furnace, and there is no extra money. So this year we have had to make a choice, the kind of choice that so many Americans make. There can't be Christmas gifts and a furnace. The furnace prevails.

I was raised in a home where both my parents worked. Although we didn't live lavishly, we lived pretty well. We had more than alot of people. I remember my parents telling my sister and me that if we wanted to live in the standard which we were accustomed, we should get an education and make sure we were employable. So we did. We have shared the same knowledge with our own children. Get an education, get a good job, and you will be successful. Always plan for a rainy day, however.

Joanna Kerns who played the mother on the famed show 'Growing Pains' has a daughter Ashley who graduated from Law School and was working as an entertainment lawyer. Misdiagnosed since childhood, she has given up her career due to Lyme Disease. Actress Tracey Silver, who was started her career in the 1990's simply fell into oblivion for 12 years as she battled Lyme Disease. Again, two American Dreams snuffed out by a disease that is unrecognized and misunderstood.

The thing about being successful, and planning for a rainy day, is that you really never think it will start raining, keep raining and not let up. I guess I never did. As we approach this Christmas I have to take pause. A Christmas with no gifts is a benchmark for me, in this journey called life. This is really serious and can happen to anyone. It's really happening to me.

Cruising in the 6 Speed With Bruce

Yesterday was a beautiful day. I had to run a couple of small errands, and my husband had taken my car, so I used his. He car is a 6 speed stick shift and goes pretttty fast. The sun was shining so I opened the sun roof. I started flipping through the gears and decided to see what was on the radio. I haven't listened to music in a really long time. My left cranial nerve, damaged by Lyme just can't tolerate it. The radio was just starting to play "Glory Days" by Bruce Springsteen and the E Street Band. One of my all time favorite bands. As the music got going and I was throwing the shifter through the gears, suddenly I started singing and I was one the wide open road....the sun shining on my face through the sun roof, the warmth of the heater blowing on me and greatness of Bruce and his guys blasting through the speakers. I forgot about the pain in my back and how tired I was for the entirety of that song. I was having a really good time!

I came home and took long nap, but it was so worth it.

The High Cost of Being Sick

The Center for Disease Control (CDC) and the Infectious Disease Society of America (IDSA) govern the treatment protocols for Infectious Disease. Because neither one of these organizations recognizes Chronic Lyme Disease, they offer no treatment beyond a few months of antibiotics for Lyme Disease. To them it doesn't exist. That, coupled along with the fact that Lyme Disease is a mult-systemic disease causing patients to present symptoms in a myriad of ways, many many patients like myself, go mis or undiagnosed for sometimes years. If you factor in that the standard CDC Western Blot Lyme Test is only accurate about 50% of the time it becomes clearer why people are sick without a diagnosis.

There is a group of courageous clinicians who have independently taken on Chronic Lyme Disease. They belong to an organization called the International Lyme And Associated Disease Society (ILADS). Because again, neither the CDC or the IDSA are involved, these physicians use treatments which are completely experimental in nature and are based on past successes with medications and personal perferences. It leaves alot to interpretation. They use terms, like "Well, I guess we could try Amoxicillin for a while" or "I've had pretty good results with Biaxin".

When I personally heard words like that for the the first time, I knew I was in unfamiliar territory. I was raised in an arena where if you had a sickness you went to the doctor, they gave you the medication and viola....you were better. End of sickness...life goes on. In these appointments, it's clear that nothing is clear. Lyme Literate MD's move antibiotics around like chess pieces, trying this one and adding on that one, and seeing if there is any result. If you have an herx, and feel worse, they are pleased, but if you don't feel worse, that doesn't mean the drug isn't working for you either. It's a maze, and if you happen to find your way out of it after walking around and around in circles for a while, you are one of the few and very lucky ones.

In many ways I am one of the lucky ones. My husband's insurance pays 60% of my medical visits and most of the medications are covered by a copay. Most LLMD's have patients on a multitude of vitamins and supplement to support their other organs during treatment, there is alot of out of pocket in that regard. The bulk of patients are not in my situation. Many do not have out of network coverage as part of their health care insurance. Some of the medications may be covered by a copay but not all, and because so many people have been to countless doctors in an effort to find out what was really wrong with them, they have already spent a fortune. The cost of IV therapy for Lyme Disease is staggering. If insurance companies added up what they have spent on patients trying to chase down a Lyme diagnosis, they would be blown away by the unnecessary money spent, which is probably literally in the millions.

We need a cure. But before we can get a cure, we need funded reserach and adequate testing. There is no way out of this maze without those components. There is a film out, which I recommend to anyone who has interest in this disease. It serves are a primer on the layers and controversy surrounding Chronic Lyme. It's called Under Our Skin, and can be found at any library or video store.

The controvery rages on.

The Monster

I feel like I am being crushed by this disease. Like it's this huge monster that chases me; occasionally I am able to sneak around the corner and get a few days or hours of relief but then it finds me again and is right on my tail. I can't fun fast enough to get away from it. It's smart and mean and deliberate and it is knocking the life out of me.

I am still sick with this URI. It's been over a week now, and the Dr. says it could last 2 weeks. My husband is now sick with it and is upstairs in bed. I haven't purchased a Xmas Card or a gift for anyone. It's snowing today in the northeast and my slope of a driveway is completely impassable. I feel like a prisoner in this house.

I look out the sliding glass door from my family room, and see the snow covering the trees in the woods. I have watched the seasons change from spring to summer, to fall, to winter from that slider for too many years now, feeling sick. The winter is the worst. I remember thinking last winter that possibly this year we would be somewhere else for Xmas...maybe somewhere warm with our family. I also think about the many many winters, my husband and I would take our kids skiing for the week in between Xmas and New Years. They learned to ski and they still love it today. Now I feel like I can hardly make it the mailbox let alone down a slope with skis strapped to my feet.

My 94 year old mother and her dear friend were kind enough to go to the store for me yesterday. They brought over some chicken soup she had made and some groceries. At 94 should she be doing this for me? Shouldn't it be the other way around? I know she is afraid for me. She doesn't have the power of the internet and remains somewhat in the dark about infectious disease and the potential ramifications that Lyme can have. She is eternally hopeful. She is my mother no matter how badly she feels with her arthritis ridden body. She wants to help.

I missed another outing with friends this week. I haven't seen one of these friends in over a year. Too sick to go. It makes me sad when milestones like this happen and I am again, absent.

Sometimes I feel like I am fighting a fight which is unwinable. My Dr's are the best in the field...they don't have the CDC or the NIH behind them in treatment protocols. They do the best they can, given what little research has been done independently. Some days, I feel like it would be easier to just give up, stop taking all these antibiotics and let Lyme Disease takes it course with me. It would ultimately mean a cruel erosion of my nervous system, early onset Parkinson's or Alzheimer's, ALS or MS and eventually the organs of my body. That kind of death scares me so I guess I must just keep running from the monster.

Sick On Top Of Sick

I must have picked up some kind of virus. I have been sick all week with a URI. It's a bad one, low grade fever, chills, chest congestion, and a sore throat like I have never had. I fought it all week and today I hit the wall and ended up in bed, with the vaporizer on. I called the doctor and they say a virus and it has to run it's course.

I haven't had a run of the mill sickness in two years. I take so many vitamins and supplements for to Lyme Disease that I thought my immune system was impenetrable. I guess not. I am concerned that I am really messing with my immune system with antibiotics, but I have no choice being that as soon as I go off them, the Lyme symptoms come back. I am hoping that after this rotation that I am on, I might be able to back off a little. Probably not. I just read on a Lyme forum I belong to of another Lyme patient who relapsed after being off antibiotics for 5 months.

I am pretty tired of feeling unwell. People take for granted their health. I know I did. For me it's a distant memory of what it's like to sleep a full night, wake up refreshed, hop out of bed, put on a pot of coffee, take a shower and head out to work. My mornings are usually more like a lifting of the fog, because many nights I have to take something to help me sleep. After I am up a while, I take an assessment of how I am feeling. It's never more that 70% well..and that's a really good day. Fatigue, and body aches are usually my two demons, depending on how they decide to plaque on a given day.

I feel especially bad today, given I have Lyme, co infections and this nasty URI on top of everything. I wish I could shut it off like a switch, just make it stop for a week. It's just so exhuasting to always be sick.

The Food Network

Like all Lyme patients I probably watch my fair share of television. I am not one to watch during the day, but I confess I do watch at night. Truly today's piece of technology called "TiVo", is a Lyme Patients haven. How wonderful it is to record all your favorite shows indefinitely and watch them whenever you want! When we first got this new fangled gadget my husband had to explain to how it worked over and over again. It was inconceivable to me that I could actually be watching a show when other shows on other channels were recording at the same time!

TiVo has kept me occupied quite nicely during the evenings of the last two years. Some of my favorite shows are on the Food Network. I think Bobby Flay is really cute, (if that matters) and has great cooking ideas....just love that "Throwdown With Bobby Flay". Someday if I get well, I have visions of us buying a monstrous size RV and roaming the USA tracking down all the 'awesome' cooks and their eateries on Throwdown. "Challenge" keeps me involved; some of those beautiful cakes they make are more like pieces of art than food. It really amazes me. There is a show called "Chopped" where 4 chefs go head to head in a cooking competition that involves preparing the secret ingredients in a basket for 3 consecutive courses. I am always blown way by the dishes they come up with mixing ingredients that basically make no sense together. Then there is Ina Garten, aka, "The Barefoot Contessa", with her sheik airy TV set kitchen in the Hamptons. Almost everything she makes, starts with a "a half pound of butter", so I could rarely ever make one of her recipes, but none the less, she entertains me. She has a publisher come for breakfast and has made fresh Banana Sour Cream Pancakes, fresh squeezed juices and gorgeous home made muffins. Friends stop by and she whips up homemade Profiteroles (used to be my favorite desert, ever) with such ease. She seems very calm and very at ease in the kitchen.

Strange how I have been lured into the Food Network. It's like entering this magical world of food and people who have day after day, continue to produce the most interesting and seemingly tasteful dishes. Everything is so colorful and beautiful and happy. I guess in many ways it pleases what senses I have left and brings some happiness for a half hour or hour. There this is no plot line, no protagonist or underdog. It's just about cooking. Pretty simple. Lyme has made my life so complicated. The Food Network is simple joy, no strings attached for just a little while.

Sometimes, I need just to have a "little while".

What Happens When The Mother Gets Sick?

My husband's mother died from Stage 4 Breast Cancer when he was 18 years old. She was 54. I never knew her, but I have heard him talk about her over the years and seen many pictures. They are the typical pictures from that era; black and whites of family picnics, outings to parks with her, his dad and his brothers along with his cousins aunts and uncles. He has told us about her kind and gentle soul, her loving spirit and huge heart toward everyone who crossed her path.
He also speaks very frankly about how his family essentially fell apart after her death. His Dad did the best he could to handle it all but eventually remarried and his new wife's life became his. Gone were the family gatherings, and gone from my husband's life was the intuition and spirit with which mothers subconsciously guide their children. He talks about being lost after her death ...leaving college....then finally returning back. Personally I know we have missed having her as a grandmother to our children and a presence in our lives.

I have been sick for over 2 years and who knows how long prior to diagnosis. It's along time to be on the sidelines, and try to coach from afar. Anyone close to me knows that I have worried how this 2 year gap in attention will effect my children. My children are not young; they are 23 and 21. But they are still my children and as we know, in many cases these days, 30 is the new 20, so it stands to reason my worrying maybe warranted.

I have been rendered unable to work due to this disease. I lost a Photography business that I owned for over 20 years. I lost all the camaraderie and importance that came along with that job along with the huge creative outlet it brought to my life. I have lost relationships and the ability to attend social events due to this illness. I have lost alot more than I can say due to being sick, but clearly the truest loss to me is the distance this disease has put between myself and my children.

Don't get me wrong. We all try. They try to be patient and ask how I am feeling. I try not to talk about it too much because their lives are full, and I am truthfully more interested in hearing what they are doing, rather then repeating the same list of Lyme symptoms over again. They know when I say "good days, and bad days" that nothing has really changed. We got through the motions in that regard.

I know having a sick mom has affected them. How could it not? It probably will affect them for life, but I do hope that there will be a day when they will speak of this time as "I remember when my Mom had Lyme", not that "My Mom has had Lyme for 30 years."

So as I think of my children today, and the days I tied their shoes, cleaned their boo boos, listened to their heartache and wiped away their tears, my heart is sad. For two years I haven't been much help, I regret, for I am the one with doing the suffering. The equation is out of wack, and it makes me most uncomfortable.

Giving Thanks

Today is Thanksgiving.

Most of the time in the midst of this storm I feel there it is little to be thankful for. There have been times, when things are on the upswing and I feel the worst is behind me when I have reflected and been grateful for how far I have come. Those times have been few and short lived in this battle.

Today I will simply say that I am ever so grateful for my eternally patient and loyal husband, who without question has stayed by my side, held my hand, listened to me cry and continues to help me ferret out an answer and end to this nightmare. I have said before that if the situation had been reversed I am not sure I could have shown the true colors he has shown.

I am thankful for my family and friends who have stuck around, trying their best to understand a disease and a situation which is almost impossible to understand.

I am grateful for the wonderful people of my church have been so kind to me, delivering meals, coming by for visits, sending cards and keeping me on their prayer list for almost two years.

I am thankful for the fellow lyme patients I have met along this journey. These are people I would otherwise never have known. They are truly some the bravest people I have had the privilege of meeting.

I am grateful that we have somehow been able to stay financially afloat these last two years without my salary. I am not sure how much longer we can hold on, but I am grateful that I have always had a warm house, comfortable bed and food in the refrigerator.

Happy Thanksgiving.