The Hardest Part

Friday was a tough day. Saturday was better. Sunday was okay. Monday, yesterday, was pretty good! Today was another tough one. In the brightness of yesterday, I set high hopes for today. They included doing some laundry and running an errand. Yes, those are high hopes. Too high, evidently. Maybe it is an adjustment to my new meds protocol (more on that soon), but I felt terrible for most of the day. Once I managed to get my son off to school, I was pretty useless. Which brings me to the hardest part, for me, of living with Lyme: being a mom at the same time.

I remember a distinct moment, sometime in late fall, when I told my son “I can’t right now, I feel really sick today,” and I realized that I had been telling him that a lot…for a long time. It hit me like a ton of bricks. “I can’t,” wasn’t something I had ever imagined saying to my child so frequently. I felt like I was letting him down, and it was a horrible feeling.

There have been days when I’m not sure who has it worse – me or him. Before mid-September, when I first got really sick, we would play outside almost daily, regardless of weather. My little guy is very active and athletic, and we did a lot of running and jumping. Roughhousing, living room dance parties, and Catch Me If You Can were regular staples. When I got sick, that all came to an abrupt halt.

Sometimes I can tell that he is angry or sad. Seven months is a long time to a nearly five-year-old. Sure, I have some good days when we can do normal things, and some things we can do together even on my worst days. But I hate not being able to be the mom I want to be – that I used to be – all the time.

IMG_20150203_151307

Silly selfies – a fun activity even when laying down

I talk to him about it. I try to help him acknowledge his feelings about my being sick. I try to validate them by letting him know that sometimes I feel sad or angry about being sick too. I bought him a storybook about having a mom who’s sick. He knows that I have Lyme Disease, and occasionally, he likes to check in and ask if I still do. He knows about the medicine I take, and I remind him how I’m working hard to get better. On days when I feel well, we don’t talk about it at all – we have fun and enjoy.

IMG_20150403_174506

A quiet morning at the library

We have gotten creative. My little athlete and I often play catch sitting down. Or I’ll challenge him with activities – see how fast he can run from here to there and back, dictate a certain number or style of jumps for him to do on his little trampoline, or play DJ for a freeze dance. Luckily, he has recently started to enjoy drawing and coloring more, along with card or board games. Of course there are always book to read, but on bad headache days, I can’t even do that, which leaves us with tv/movies.

IMG_20150114_165647

Introducing him to one of my childhood faves

I am a person who tends to have trouble taking care of herself, but the motivation of being well for my son helps push me. I sometimes feel guilt about the amount of time he spends at preschool, but I know I need that time to rest in order to have any hope of enough energy and wherewithal to care for him during the time that he is home. It is hard to be sick for months. It has hard to feel like I’m disappointing my child, who I love more anything. But I have limitations right now, and I have to respect them. Hopefully, one day these limitations will be just a memory, but until then, all I can do is my best – and be grateful every day to be mother to this delicious snuggle bug.

IMG_20150411_125052

Advertisements

Traveling While Lyme-ing: I Don’t Recommend

Life doesn’t stop when you have a long term illness. The calendar pages keep turning, and life events keep on keepin’ on, even when you feel like maybe you can’t. I am a person who is comforted by plans. I love a well-thought out plan. I love looking forward to things that I have carefully planned. I like to be the planner, and I love to be in control. Having Lyme has turned that completely upside down. Now plans give me anxiety. It’s hard to make them, because I don’t know how I will feel on any given day. When plans are made, I never know what curve ball Lyme might throw that could jeopardize them. This makes me feel out of control, and I hate it.

Each year in mid-April, we like to take a trip. It is something we look forward to all winter, during my wife’s busiest and most stressful time of year at work. It’s a little mini getaway that shines like a beacon of light at the end of the long and often bleak New England winter. I wouldn’t dream of not planning our trip this year, Lyme or no. Last year we went to Brooklyn, NY, and before we were even back home, we knew we would do the same again this year. When it came time to make travel plans, I figured – Maybe I’ll feel better then, and We’ll figure it out.

Well, we are now home from this year’s trip, and I’m here to tell you that I don’t feel better, and we kind of didn’t figure it out.

We did have some fun. We had great meals for which our son was not only patient and pleasant, but happy to try new and unfamiliar foods. There was an early morning playground visit with bagels, sunshine, and squirrel watching. We had some laughs, took some great pictures, and it was nice to get out of town and visit a city we love. But mostly, it was really hard.

11159991_10204500677172535_3780354893319775287_n

Pretty, but hard.

I knew the main issue with Lyme-ing in NYC would be all the walking. We have already avoided a lot of out outings at home because I can’t count on being able to walk for a long time. So I thought we would add wheels. I looked into renting a wheelchair, and discovered it didn’t cost much more to buy one online. I figured one day when I’m better, we can sell it cheap to someone who needs it, so why not? I knew using a wheelchair in NYC wouldn’t be easy, per se, but with a large museum on my son’s wishlist for the trip, I thought it could be helpful. And it was…kind of.

We tried to do too much subway riding with it than any wheelchair newbie should. Many of the stations aren’t wheelchair accessible, which we knew, but it was really a drag. It just added more strain to an already difficult day. Dealing with the chair, the kid, the subway, Manhattan – it was just too much. Not to mention, being someone who is used to taking the lead and making decisions, being on my butt and pushed around, with my wife behind me and up too high to hear me well, was really frustrating. Sidewalks are bumpy. When feeling Lyme-y and not up for walking – the motion of being wheeled around doesn’t feel much better. We made it through the day, but it was a struggle.

The next day, we had planned to stay in Brooklyn, which we knew would be easier, but the weather didn’t cooperate. I felt confident that there were enough places in the neighborhood to pop in and take a rest if I needed to, so we didn’t bring the chair, which lightened our load. But it was terribly windy and pouring rain. Places we wanted to go were closed. Our son was annoyed. We were wet and tired. I was carrying the guilt of feeling like I had messed up the whole trip, and it weighed too much. Add in some serious problems with our accommodations, and we ended up throwing in the towel and leaving a day early.

Anyone who knows anything about Lyme would tell you that a sightseeing trip in NYC is probably not the best vacation for a Lymie. I now know that optimism, wheels, and determination are not enough to change that.

Good!

I have had some really good days, y’all!

On Saturday, my wife and I went on a date. We went to a nearby seaside town, poked around in shops, drank coffee by the water, and ate dinner out. We took it slow, and I needed some breaks for sitting, but I generally felt well. We had such a lovely time.  Sunday was another good day, and while I did need some extra rest, I was able to keep moving for much of the day.

Monday was a little shaky; Tuesday called for a proper nap and taking it slow. But today, Wednesday, was possibly the best day of them all!

I try to make it to yoga on Wednesday mornings. Before getting Lyme Sick, I went 1-3 times per week.  At my sickest, I can’t even show up. Over the last several months, I have missed a lot of weeks. Each time that do I make it to class, I never really know how it will go. There is so much I can’t do now that I could before. My body has weakened, and my energy is low. With my headaches and neuro problems, I am very limited in how often I can put my head down, which is part of a lot of yoga postures. Over time, I have learned to modify my practice for my limitations. No matter how little I can do, there is always something that is possible, and every little bit of stretching, breathing, and meditating that I can muster is beneficial. Well, today was my best yoga practice in months!! There was still plenty I couldn’t do. I still spent lots of time in child’s pose, but I felt stronger than I have in ages. And after class? I didn’t need a nap!!!

I ran an errand on the way home, and still didn’t need a nap! I put in a load of laundry, made lunch, and still didn’t need a nap! I did more laundry! As I started to put away the laundry, I started to clean out my winter clothes from my closet, and still didn’t need a nap! I did more laundry! I finished organizing my closet! I took trash out to the dumpster! I picked up my son from school, and…I still didn’t need a nap!!! I brought him to an after school activity. We came home and ate dinner on the back porch. We played in the back yard (with games modified so Mommy doesn’t have to run 🙂 ), and I still felt well!!

I didn’t start to feel pain in my head until 6:00pm, and even then it was only moderate. Hey, look at the clock – it’s after 9:00pm, and I’m still doing alright!

Time to quit while I’m ahead? Good plan. Good day. Good night.

Lymerella

In speaking of long term illness, there is a lot of talk about good days and bad days. It’s been just about seven months now since I spiked a high fever and everything changed. In that time, I have had some very, very bad days. I have had some good ones. I have definitely gone places, seen people, laughed, had fun, and for some moments even forgotten about being sick. I have covered my illness with cosmetics and bursts of energy that I summon up from either sheer force of will, or stubborn determination to just feel good for one goddamn second. But there is a limit.

Within the community of people with invisible illnesses, the idea of Spoon Theory has caught on. It is a simple and powerful explanation of what it’s like to live with an invisible or chronic illness. The idea is that each day when you wake up, you have a certain number of spoons. Each activity you complete during the day uses up some spoons. So, maybe you start your day with 10 spoons. Some days, simply getting out of bed, getting showered, and dressed will use up 3 spoons. Then it’ll take 5 to go to the grocery store to pick up a few things you’re out of and carry them into the house. 2 more spoons to make yourself some lunch before you collapse onto the couch, and you’re out of spoons before the day is half over. It’s a nice concrete way to explain how, with an illness like Lyme Disease, you just run out of gas.

I feel like Lymerella sometimes. The Fairy Godmother’s magic only lasts so long before I turn into a pumpkin…or perhaps a lime would be more apropos?

I have had some very good days recently. One day, I taught my music class in the morning, and then had the energy to go to the grocery store (which is already impressive). Once at the store, focusing on the things I absolutely needed, assuming my energy wouldn’t hold for long, I realized I still felt pretty darn good, and kept going. I filled my cart! I don’t remember the last time I was in a grocery store for that long and didn’t feel like I might black out out by the time I got to the register. I even managed to get half of the groceries into the house before I really started to feel tired. I had to spend the next couple of hours in bed in order to be ready to pick my son up from school that afternoon, but it was really a banner day. I had a nice afternoon with my little guy, and felt pretty good about myself.

Tick…tock… My Lymerella clock struck midnight at about 7:30. I felt the piercing pain in my head, the right side of my face pulling down, and my right arm and leg ached with a strong persistence. My wife came home from work and I could hardly manage two-word almost-sentences to let her know that I really had a good day, but it was OVER, and good night, we’ll talk in the morning.

The last several days have been mostly okay days – not really good, not really bad, but they have something in common. Each day has a finite number of spoons to use. Each day, that Lymerella clock will strike midnight. And day to day, I don’t know how many spoons I’ve got in my pocket, or how fast the clock is running out.

My Story: Part 3 – The Cost of Getting Well

I have to give a little background information before delving into this part of my story:

Many in the medical community, despite overwhelming evidence to the contrary, believe that Lyme Disease is always cured by short term antibiotics. These medical professionals deny that patients who continue to suffer from Lyme for weeks, months, or years still have Lyme. They say that these patients have some other illness, or are faking it, or are crazy. If these patients test positive for Lyme after being “cured,” these medical professionals say they had to have been bit again, and once again prescribe the same short term antibiotics, which once again do not cure the patient, and the patient is again told they have some other illness, or are faking it, or are crazy. I hope and believe that a change is coming soon in the medical community. When hundreds of thousands of people are suffering – we can only be ignored for so long.

In the meantime, because Chronic Lyme Disease is not acknowledged by the CDC, treatment for it is often not covered by insurance. This means that many patients are unable to afford the treatment and care that they need to get well.

Doctors who understand Chronic Lyme Disease and offer longer term treatment for patients are often cloaked in secrecy – their names only spread by word of mouth and through secret lists maintained by Lyme Disease advocacy groups. Many of them do not take insurance at all. These doctors risk their licenses for treating an illness that “doesn’t exist,” or coding care in such a way to get coverage for their suffering patients. These doctors who understand Lyme Disease and treat beyond the short term are known as Lyme Literate – LLMDs, for short.

—-    —-    —-    —-

In January, while sitting around waiting to get well, I decided to dip my toe into the LLMD search. I had so wanted to be one of those people who just gets better and avoid the whole LLMD situation altogether, but January would mark 4 months of being debilitated by Lyme, and I felt as though I couldn’t leave any stone unturned. So I did my secret searches and came up with a list of a few LLMDs within an hour’s drive. Lucky to live in Massachusetts in this case, as many patients have to travel very far, incurring flight and hotel costs to see an LLMD. I investigated each one, and found that one practice would accept insurance. No-brainer – I chose that one.

They were able to schedule my first appointment quickly. When my appointment began, I immediately knew I was in the right place. These people get it. They went through my whole medical history with me, were appalled by the way I was brushed aside by the Infectious Disease doctors, and found it borderline negligent that certain steps weren’t taken, or even mentioned to me as soon as I got that positive Lyme test result. Immediately plans were made to get to the bottom of how much damage the Lyme had done, and how we could best get to undoing it.

I want to be very clear in saying, it would be a great financial hardship for my family to pay for my care without insurance coverage. I’m not really sure how we would swing it, and frankly I don’t like to think about it. It is maddening to think that I could be as sick as I have been, for coming up on seven months, and an insurance company could say. “Sorry, your illness doesn’t exist. Good luck with that.” The truth is that even with insurance coverage, Lyme treatment is expensive.

The first cost of Lyme is my lack of income. Before I got very sick in September I was working 20-ish hours a week as a postpartum doula. I am completely unable to do that now. The next cost of Lyme is driving an hour to my appointments, for which my wife needs to take time off work because I’m unable to drive myself that far, due to Lyme symptoms.

Once I started with my LLMD, a whole host of blood tests had to be completed. You need to find out what areas of your system have been compromised by the Lyme, what co-infections you have, and what important nutrients you may be deficient in, along with numerous other factors. I was lucky to have all of my blood tests covered by insurance, except for one, which we felt was necessary, and paid $200 out of pocket for.

My continued doxycycline, and a couple of additional antibiotics are thankfully covered by insurance, so it’s just $10 copays for each refill. I, like most Lyme patients require a plethora of additional pills – probiotics, biofilm attackers, high dose vitamins, nutritional supplements, just to name a few. At my first LLMD visit, I dropped $95 on pills. Then another $90 when I started to run out of things. When test results started to roll in, and pills were added, another $45. A month into my treatment, at my follow up, I spent $200 more. I’ve already spent an additional $160 on refills since then.

At roughly two months into treatment with insurance coverage the total is already breaking $800.

I don’t share this information (or anything else on this blog, for that matter) for pity. I share it because people need to know. People need to know that Lyme disease is the fastest growing vector borne infectious disease in the country, with new infections between 300,000 and 1,000,000 per year. People need to know that thousands upon thousands of people are very sick, and need a lot of medical attention to get better – and that medical attention does not come cheap. $800 on two months of care is bargain for a Lyme patient. If I were to need intravenous antibiotics (which is still a possibility, though hopefully avoidable in my case) the out of pocket cost for that is tens of thousands of dollars – who can afford that? Certainly not someone who is unable to work due to their medical condition.

No one should have to face bankruptcy to recover from an illness obtained from a bug bite in this day and age. No one. And that is why I speak out, and will continue to speak out about The Cost of Getting Well.

So that brings you to the present. I found good medical care; my family is thankfully able to afford it and our basic needs, and I continue to adjust to my new normal, of my health being the main focus of my day to day life, and now a significant part of our budget.