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.

Exercising and The Children

The experts say Lyme patients won't get better if they don't exercise. It's makes complete sense. It's essential for detoxing dead toxins out of your body and boosting the immune system.

Exercise is good for everything. I used to exercise regularly before I got sick. I've run he gamut of Aerobics classes, Step classes, Palates, Yoga, Tai Chi etc. In the years prior to diagnoses I had basically pared my exercising down to walking about 2 miles and doing some lite weight work at home. I didn't have the same stamina I used to have. Now I know why.

Exercising when you are sick can be a problem. I do the best I can and try to get out on days I don't feel as bad. It's not consistent, because the days I find myself confined to the couch, clearly the last thing I can do is exercise. Like I say, I do the best I can.

Today I felt well enough to go for a walk. My hip is still hurting but not as bad. I am not as spacey and my headache is more manageable. I slept a little better last night so I had the fuel. My husband and I went to the track at the Middle School campus nearby. I feel pretty safe there, if I stay in the center of the track lanes as it is surrounded by fields. It was a beautiful day here and I didn't want to miss out on the sunshine.

I have walked at this track on many other occasions. It's in a very rural area where many families have moved north from the boroughs of New York City or Westchester. The area is safe for raising children and the cost of housing is reasonable. The school districts although large, are for the most part pretty good.

I was at the track in the middle of the day once last spring and some of the school kids were out on the grass having gym class. They were playing soccer. It was a warm day and many of the kids were wearing shorts. They were running all over the place, diving for the soccer ball. As I drove past the soccer area, headed for the track itself, I glanced to my right and about 25 yards away I saw at least 30 deer grazing and wandering around. They were literally only yards from the kids. I remember being shocked. These innocent school children were playing in the grass where obviously these deer had walked. I remember doing some quick math in my head, guessing the percentage of kids in that group that would be bitten that day.

It's the children I feel the most sorry for. In the 2 years I have been sick, I have seen my share of sick kids at the Lyme doctors office. They are destroyed. They are pale and listless, thin and very sad. If a child is bitten when they are 5, misdiagnosed with ADHD, depression or a behavior problem for a few years, and become very low functioning, occasionally a professional along the way will think of Lyme. It's a long road back for them. They have missed tons of schoolwork to say nothing of the childhood fun and socialization they will never get back. Their lives are about coping with illness and doctor's appts. The treatment is rough and unpleasant. I've wondered how many tears have been shed, over a child not wanting to infuse their Picc Line with IV antibiotics, or take their meds because it gives them stomachaches. Their parents sit next to them in the waiting rooms, exhausted emotionally and probably financially as well.

Very often I feel that if someone of power at the CDC or NIH had a child who suffered with Chronic Lyme, the road to research and a real cure would be evenly paved and much much shorter.

*posted National Lyme Disease Risk Map - Darkest Areas Are the Most Endemic*

Not Sleeping

It's 415AM. I can't sleep...I am in so much pain...this must be the herx from the new antibiotic protocol. My head is pounding, every muscle in my body aches, and I have this horrific pain in my hip. I'm so tired and I need to sleep. I don't usually take the meds for the pain that I was given to the doctor. Tonight I don't have a choice. I am scared wondering how long this torture is going to last. It can last 2 days to 2 weeks.

Playing Outside And Never Going On The Grass

I used to play outside all the time as a kid. I grew up in a neighborhood where I could ride my bike, play hide and seek, tag, kickball, make forts with leaves and all kinds of great fun. I always felt better playing outside with my friends, getting exercise and running around. The town I lived in is home to a college campus and the campus fields were directly across from my street. We used to go over to the fields and hide in the 3 foot tall grass, and pop out at each other. I remember summer days my mother packing a bag lunch so my friends and I could go over the fields, sit under the tree and eat. Sometimes we would see deer not far way, and we would be so careful not to disturb them. They were so gentle and beautiful. We shared the wide open spaces with bunnies, and squirrels, chipmunks and birds, and thought it was neat to be a part of their world.

Getting older, brought less time outside except to help mow the lawn and do the yard work. I enjoyed being outside even though it was more about work and less about play. Of course we went to to local parks on some hikes, took vacations at the Finger Lakes, and went on a few camping trips here and there.

When I had my children, I was so happy to revisit my fondness for the outdoors. I wanted them to enjoy the outdoors as much as I did. When they were really little, I took them outside everyday so they could play in the yard. They played all the same childhood games I used to play in our neighborhood. I would encourage them to go outside everyday after school, to get their "wiggles" out. All the kids in the neighborhood played together. It was great watching them run and play. They always had a good appetite and slept well at night. I was certain that they would grow up into wholesome grounded adults with an appreciation for the gifts of nature. The kids were involved in sports during school. Like all the other mom's, I'd sit at the fields and enjoy the fresh air and sunshine.

Since being diagnosed with Lyme and living the nightmare of a Chronic Lyme Disease patient, I no longer walk on the grass in my yard, or on any grass in any ones yard. My path to the car is either through the garage or straight out the front door and down the sidewalk to the driveway. I will go on no hikes, no camping trips, no picnics. If I go to a park, I head directly to the sidewalk, and don't let my feet slip from that concrete. I no longer do any yard work, pull weeds or trim shrubs. I will sit on my deck, with great caution, knowing how ticks like to hide in the dampness between the decking. The woods on our property are 25 feet from my back door. I watch the deer, squirrels, chipmunks, bunnies and birds from my sliding glass door, and now only view them as tick delivery vessels which aid the persistence of devastation, pain and illness.

It saddens me that it has to be this way. I miss what used to make me feel good about life. The confinement of being sick with Lyme, causes me to mourn the freedom of the outdoors. I miss the life I used to have. I had no idea how serious this disease could be. Had I known I would certainly have been more careful. How could we not have known?

What's A Nice Girl Like You Doing In A Place Like This?

Treating Lyme Disease and Co-infections is done with rotations of antibiotics and sometimes herbal remedies. All the diseases have lifecyles, take on different forms, and are only killed off during their reproductive cycles. When the diseases are initially hit by antibiotics, they release neuro toxins into the blood stream causing the patient to "herx" (short of Herxheimer Reaction - Google it) and feel worse until the dead toxins are detoxed from the body. Factor in a 2 or 3 different diseases, ie, Lyme, Bartonella, Babesia like me; length of time the diseases have been harbored, sensitivities and changes in medications and it is understandable how long treatment can take. Also, because of the toxicity of the medications, patients can develop complications like yeast which force a break in the treatment schedule. I personally had a 5 month break in treatment which set things back for and sent me into a full on relapse.

So it sounds simple, hit the bugs with antibiotics, wait for the bugs to die, and detox the dead stuff from your body, and you are well. It does sound simple, except there are tons of other scary factors...like possible auto immune responses, previously mentioned sensitivities to medications, heavy metals, genes which prevent proper detoxing, clogged detox pathways, and alot more I knew but probably forgot.

Today I called the Drs. office to speak to the PA. My first appt with this new (my third) LLMD (Lyme Literate Medical Doctor) was November 5th. It was a four and a half hour appt. They were very thorough going over my history, drawing bloods, a physical etc. My treatment protocol included Minocin, Plaquenil, Tindamax, Zith, b12 shots, Nystatin. The first Minocin I took, gave me a major migraine, so I called and they said to hold off the Mino for a while. I have been gradually increasing the Zith and Plaquenil. I am still at only half the dosage for the Plaquenil. My sleep has become interrupted and I have had this dizzy, confused, inability to concentrate feeling. I think it's from the Plaquenil. I am willing to tough it out and stay on it, if it's just bugs dieing off, but if it's a serious side effect, I am sure they will take me off.

This is how it goes with Lyme. Trying meds, feeling their effect, and trying to stay on them. Forever wondering if taking all these meds is really doing more harm than good to your body, wondering how much longer it will take to get back to some reasonable shadow of yourself, wondering if you be able to participate in the next family holiday, wondering if you be well enough to attend your kids' future graduation, ....all the time wondering.....what's a nice girl like you doing in a place like this?

Encountering Others

I bumped into someone in the grocery store yesterday. She had heard about my illness but wasn't sure of the particulars. These encounters are especially hard for me. Not that I mind people asking...I appreciate their concern. How do I shorten this 2 plus years into a conversation that is understandable next to the broccoli and collard greens? It was late in the day, which is generally the time I am on the couch, so I was tired, and feeling a little dizzy. I just wanted to get home.

This person continued to ask questions with deeper interest and I could see her face turning pale. I have had this reaction before. It's generally before people's eyes glaze over. It usually means one of two things. They are in shock and tuned out and planning their escape from the conversation OR they are connecting the dots in their own head, about unexplained aches and pains they or a family member has; symptoms that a doctor can't define. I could tell she wanted me to continue to talk, tell her more specifics. She was looking more and more serious and talked about how she always did her own yard work, has along history of camping and hiking. She is a nurse, so I told her about Igenex and mentioned that if she was really worried to do a blood draw and maybe it would answer some of her questions. I explained I really needed to leave, and I wasn't feeling well. I took what I had in my cart checked out and left.

I was exhausted when I got home. Not only from the busy day I had, but from the conversation. I, like all Chronic Lyme patients suspect that most people who have spent time outside, especially in endemic areas like upstate New York where I live, are harboring some kind Tick Borne Disease. The lucky ones are those whose immune systems are never challenged and it remains dormant. The unlucky ones are like me...something tips the scales, either another bite, or an illness and all hell breaks loose, my immune system couldn't hold it off any longer.

I don't know what this person will do. She may call me if she wants.....maybe not. Talking about this disease with people who are unfamiliar is a challenge. You can really look like "The Crazy Lyme Lady" if you aren't careful. The fact of the matter is that Lyme Disease is the number one Infectious Disease in the US. Everyone is at risk, unless you live in a bubble. People in rural areas are living among the ticks, and people who live in Urban areas aren't completely safe.

I am blessed that I have made some really good friends with people who are struggling with this disease. I also have a few friends who aren't sick who try to keep up, listen when I blather on and try their best to understand the treatment protocols and how they effect me. There have been some people who have lost patience with a sick friend and therefore drifted away. I guess I understand, but I suspect I will understand better, if I ever get well.

I walk the fine line of allowing the disease which has overtaken me to overtake all my encounters with people. Is it better to talk about it, or be silent? I think it depends on the person. Lyme Disease has completely changed my life, my thought patterns and feelings about people. It has caused me great introspection and rocked my beliefs. It is difficult for me not to bring this baggage to conversations, right now. Hopefully one of the benefits of getting well, means that I will no longer have to wear this disease like a badge.

Chronic Lyme, Amy Tan and the Holidays

In my first entry I failed to mention the difference between Lyme Disease and Chronic Lyme Disease. Strange when you live in world of illness, you become accustomed to using words and acronyms assuming they are familiar to everyone.

Chronic Lyme Disease refers to people who still have symptoms despite treatment. In my case, I have Chronic Lyme Disease. I have been in treatment, on and off antibiotics for 2 years, and still have remaining symptoms. When off of antibiotics I get sicker. I also have two co infections of Lyme Disease; Bartonellla and Babsiea...two Tick Born Diseases (TBD's) which piggyback along the the Lyme infection to make treatment even more difficult and the symptoms even more confusing to weed out. All of these diseases I have had for quite a long time.

Chronic Lyme Disease is not recognized by the mainstream medical community, nor by the bulk of health insurance companies. There is little research and almost no funding. Patients and their families are forced into "experimental treatment", while watching their bank accounts dwindle. They start to choose between paying bills and paying for Lyme Doctor visits. We are the orphans of medical care in the United States. We have to navigate on our own, and hope for the best.

I was reading Amy Tans' website yesterday. She is the author of books such as "The Joy Luck Club", and a fellow Chronic Lyme Patient. She has suffered as much as all Lyme Patients. You can read her story here: http://www.amytan.net/ under the Section "SLyme Disease." I found it frightening that she is building a house for the future which is wheelchair accessible. It really bothered me that she is famous, has more money than most of us and can to pay for any kind of treatment. She is planning her future, and quite blatantly accepts it may be one with a wheelchair. Another nail in coffin. This disease is devastating. It has huge consequences. It scares me.

The holidays are fast approaching. When I started seeing TV commercials the day after Halloween, advertising specials for Christmas, I felt a shift in my soul. This will be my third Thanksgiving and Christmas sick. It means that I have felt like I have the flu, dealt with nerve and excruciating migraine pain, insomnia, and body aches (to name a few) for over 700 days. 700 days is a long time, for me anyway. The holidays represent a time of family and joy, sharing and visiting. I feel like I have nothing to share and nothing to be joyous about. I am worn out. I don't want gifts and I don't want to give gifts. It sounds selfish, I know. But my spirit is broken by this disease. Some days I don't know how I will make it through to dinner. Looking ahead at the hubbub of the holidays completely overwhelms me. I am looking forward to seeing my daughter and son, coming home from school. I look forward to their energy in the house, but I am saddened that my role as their mother has taken on the hue of a chronically ill person. It's not fair to any of us.

Lyme Disease, with all it's deception and trickery is not the slightest bit fair.

My First Entry

I opened a blog account with blogspot a few months ago, and never made any entries. I'm not really sure why, but I suppose like every other thought process with this disease, I felt that blogging when you have Lyme means you are really sick.

I am really sick. I gave a brief overview of the beginnings of this nightmare under my title. Had they allowed me more than 500 characters I would have written more.

My Lyme diagnosis came in September 2007, 2 weeks before Claude (husband) and I were to leave for our 25th anniversary trip to Europe. I was really ill with a flu like bug, with all kinds of other symptoms. I had tests along with a trip to the ER and finally had a diagnosis of Lyme Disease. Our trip was postponed.

Treatment began, starting with 200 mg of Doxycycline. I got a little better but after 2 months, still had many remaining symptoms. Malaise, bodyaches, headaches, insomnia, confusion, to name the short list. After doing some online research the pieces of the puzzle started to come together. Years before my diagnosis, I had lot of strange things going on. Nothing that pointed to anything specifically. I knew I was doing less and less, napping in the afternoon, having trouble concentrating. I had an event where after a root canal, I had horrific nerve pain in my left jaw, along with a stiff neck and headache. I was told I had Trigeminal Neuralgia and given meds for that. I just didn't feel well most of the time. I had 4 Western Blot Lyme Tests in the years after the root cancel episode to September 2007. All Lyme test results were negative.

...but I had a family. My kids were college and high school age. I worked at the photography business. I pushed past things. I told myself, everyone has little aches and pains. We are all getting older. Maybe I am just hypersensitive. None of the doctors I saw thought there was anything wrong.

Within those years, assuming I was first bitten in 2004, Lyme spirochetes were burrowing deeper and deeper into every muscle and nerve ending in my body just waiting for a time to take over and change my life forever. And so they have, and I have decided that this story deserves to be noted. Please forgive me if my grammar isn't as accurate as it could be, a typo appears here and there, or if my entries aren't consistent. This disease changes from day to day, and offers no reliability to my energy level or ability to think clearly. Please be patient. Lyme is not a disease for the impatient.......so I have learned.