The Full Moon

It's a full moon and I am back in treatment. My two weeks off were pretty good I would say, with the exception of some excruciating joint pain and thigh pain. But now it's back to the grind and I am wiped out. But the full moon keeps me awake despite my 10 pill sleeping cocktail and here I sit awake, not able to sit up or do anything, but awake.

I haven't blogged in a while and the reason is... I forgot I had a blog. My short term memory is kaput and the only reason I remembered I have a blog is that someone asked to join my book group on Facebook.

It's been an eventful couple of weeks. We made it to Maine for 2 nights with the help of my parents. I laid down on the couch for the most part and have never slept in a more comfortable bed. It was hard for me to get out of it. There were lots of naps and lots of going to bed early. My parents were with us and Dad was a great camp counselor for Mini and took care of occupying her all day. I was able to play a couple of hands of Old Maid and even went fishing once. I caught nothing. Oh well.

Tomorrow I have gentle and restorative yoga. I am looking forward to it, but at the same time, I am afraid to go knowing the state I will be in. It should be a challenge. I may take my new assistant with me in case I need to leave early, but they are very good at this yoga place and intuitively know when a member needs something, so it should be ok. I hope I make it. It does seem to help open up my vertebrae and we know the Lyme is in my spinal fluid, so this is an important discipline I must follow.

I don't have much to report, other than I feel like crap and need help with everything. I can barely move. I did get to see my blue sky on Sunday and that brightened my week. I hope to see more of my skies soon, but the situation is complicated and I really cannot handle complicated right now. It's a tough puzzle, but one day all of the pieces will come together into one big blue sky. I look forward to that.

I hope all of you are feeling ok. I know I have many readers with Lyme and I want you to know that I am thinking of you. Get some rest. Hang in there. Trust your instincts. Just be.

Wake Me Up When It's Over

There are things in life that go smoothly, without a hitch. Then there is my life. I am really having a hard time emotionally right now for so many reasons I cannot even go into them all.  I have been having real panic attacks lately, that don't seem to completely go away even with Ativan or Xanax. Believe me, I have gone the natural calming root and at this point in my infection, I use natural supplements as a compliment to my western medicine approach.

My stomach has been very nervous now for a couple of days and it is getting worse. I am feeling insecure and am crying A LOT, especially at night. Sometimes I find it hard to even get through a conversation without the tears flowing. I am stressed.

I wonder if it has to do with the sudden change in weather. It's extremely cold now and tomorrow we are supposed to shift back into the 80's and 90's for a few days. The weather beats my body up and I get very anxious and deal with a lot of pain when this happens. I have no real pain to speak of right now, besides a completely locked jaw, but I know it will be back with the hot and humid weather which is to come.

My new assistant is working out well. I can relate to her on a different level because we are the same age and some of the personal stuff I am going through I can really sit and talk to her about and realize that I am not alone in my struggles, that these things happen to us all at some point in our lives, especially when things tend to work out in the long run. But it's hard and the pressure is on for the conference which I leave for on Thursday. I am being driven down by a driver and brought home by my sister.

I miss the days when I could hop in my car and go where I wanted, when I wanted. I hate having to coordinate my life around other people's schedules and feel like a burden. I just hope the conference rooms are not as freezing as they tend to be, but I am going armed with warm clothes this time, really warm clothes and maybe a blanket.

I am stressed about going away. Stressed about being in Providence, where I grew up, and stressed about meeting a friend I have not seen in a while. And my stomach is in knots. I hate the way I feel right now. I just want to go to sleep and wake up when it's over.

Back to Reality

It was just two nights away, but two nights that counted. There is something about that cabin that relaxes me. It been a haven for me since I was a child. It belongs to the son of my father's late mentor, so we have been going there forever. We came back energized and rested. I am also in hot pursuit of the mattress that was on the bed I slept in. Holy moly. I am all over that.

My new assistant, Julie, starts today. Thankfully, I do not have any pain yet this morning, so we are going to hit my walk-in closet and see what we can donate or organize. It needs to be done, along with my daughter's playroom (next since she is getting a dollhouse my dad built as soon as there is room), and then the basement. Not sure how I feel about that one. This is New England. I am sure we have had some roommates.

I could crash at any moment, but it is what it is. On Thursday I am off to RI for an Executive Conference for work. Some people don't understand how I can do this if I am so sick, but I have to do it for my career. It's what pays the bills. Sometimes I check out mentally, but showing up is half the battle and I always pass out cold at night. I only have one presentation to do this time, which helps me immensely, although I am always happy to share my knowledge and experience with the group.

Finances are TIGHT. Ugh. These medical bills and not being able to work the way I am used to, 95% from my bed, have finally taken their toll. I managed to soldier my way through for two years form my bed, but now I see during the last two months that it's caught up with me and I am in a little it of panic mode. I need to get out there and do a few one hour presentations each month on my non-treatment weeks or I don't know what will happen. I did much better with the IV, as you know, and these oral meds are kicking my butt.

No matter what I do, I need to sleep from 2-4. It is what makes me function. I sleep so hard during those naps and I look forward to them. My eyesight is decent right now with glasses, so last night I started a new book, Proof of Heaven, by Eben Alexander, M.D. he is a neurosurgeon who has lived his life scientifically, who died and came back to life, remembering what he saw when he was dead. I am looking forward to getting into that part.

I am still not driving, but having Julie gives me more freedom to get out of the house and she is more flexible with her hours, so I am happy about that. On days i have energy, even just going into town feels like a bit of freedom.

In any case, I am thankful for a good start to the day for once and hope it will continue for a few hours. Thanks for joining my continued journey. Please do comment on the blog so we can create some buzz for the book release. The more visitors and comments, the more media will care and share my experience with Lyme, shining some light on the disease and supporting others with Lyme and their loved ones. Thanks again for your support. It feels good to be blogging again.

A Weekend in Maine

We're spending this weekend in Maine, in a cabin I have come to since I was a child. My parents brought us here knowing I needed to get away from my house, which has been my holding cell for so long. It's freezing here. I mean really cold, but I am sensitive to the cold, so maybe I am just exaggerating.

On this treatment round I have now noticed a real rhythm to my fatigue and pain. I wake up with Mini around 7 after sleeping very hard with my "sleep architecture concoction". I take my thyroid pill first thing and it takes me a chunk of time to wake up. Then I get up and take round one of pills - on an antibiotic off-week, it's about 18 pills in the morning. Then I spend the morning kind of awake, sitting, trying to get stuff done. My feet are bothering me a lot. I keep telling my massage therapist that I wish she could just crack my feet a thousand times. Everything just feels so out of place. Bartonella.

By lunchtime, I get hungry (finally) and eat some kind of meal. If I am at home, sometimes I forget, but usually it's a half a sandwich or some wonton soup from Trader Joe's or something. And then by 1 I start to crash, dead asleep by 2p.m. This is perfect because it's Min's nap time and she knows she needs to stay rested and quiet (if not asleep) until 3:30 when she can play her with iPad until 4p.m. when she is allowed to wake me up.

This is the roughest time of day for me - from 4pm - 7pm because there is so much I have to do with her and my assistant has left by then. We play, I make her dinner, feed the dogs, throw her in the shower, jammies, read books and get her in bed, asleep by 7. Once that is done, I go straight to my bed, and bury myself in my comforters. I work, blog, watch TV, stare at the ceiling, etc. But this month, no matter what I am doing, I sit in that bed and cry. These are seizures that have been recurring now and I need to do something about them.

While I am in bed, I start to notice the leg pain creeping back,feeling swollen in my calves, numb in my shins, and painful in my thighs, radiating up into my hips. Enter the Vicodin. This pill is so hard for me to swallow - pun intended. I spent so many years working in a naturopathic medical practice and yet here I am, pounding antibiotics and now Vicodin. I have been having consistent panic attacks - enter Ativan (which I take 3 times a day anyway) AND now Xanax when really necessary, which has been more frequent lately.

I am extremely emotional these days. I think it's all just taking its toll on me and besides being sick and having a child, I have the usual professional, personal, and financial stress of it all to deal with. It's caught up with me and I am pretty overwhelmed. And so flow the tears as I write.

I was talking with my dad this morning about it all and for the first time said, "if I ever get rid of this thing"and he agreed. Will I ever get rid of this? Probably not. Will I feel infinitely better? I believe I will. I will do everything I need to do to get better. I have come a long way with Dr. J, but there are setbacks and he has described my case as "building the plane while flying," mostly because I have adverse effects to most of what he does. I don't know if it's because of a 3 decade infection, if it's because I have it in every section of my brain while most people only have it in 2-3 parts, or if the fact that I carry both the American and European strands complicates it all. There just isn't enough research to know. So I am a plane being built in the air. SUPER.

I have noticed that my spine is giving me trouble again. I have massive pain in my sacrum all the way up to my upper cervical area. We have known for some time that my spine has been greatly affected and when that is in action, it's brutal. I have a lot going on to distract me, but it's the pain that manages to outweigh all distractions.

Now that I have started to suffer from the cold again, I will need to start taking saunas again. I was unable to do so while I had my PowerLine, but now that it's off, I can use it again. Many years ago, when I was diagnosed with CFS, fibromyalgia and Addison's Disease, my grandmother was nice enough to buy me an infrared sauna, a dry sauna which penetrates an inch beneath the skin. This helps immensely. Problem is, I always forget I have it because I forget everything. But now, I am cold enough on vacation to remember, so hopefully, I will remember some days at home.

Yesterday I had a very exciting phone conference with the designer of my book cover and interior. Thankfully, he loved my cover design and we are rolling with it. The designs should be done by Friday and then I will be able to combine my favorite parts of the 3 mock ups of both the cover and interior designs. Then I am able to go through the book one more time to look for printer errors etc. And then... they set up the printer.

It's all happening now. The sooner we get the book out, the sooner people may learn more about what it's like to have Lyme and hopefully those who know they have it will be able to relate to parts of it and not feel so alone. It's a long and winding road, this thing they call Lyme. I have known my contribution was meant to be in the form of a book, so I am excited to get it out there and do what I know I have been called to do.

Book clubs are starting to contact me and I am suggesting a January or February read if you are setting up your calendar. I am looking for contacts of book clubs (online and local) as well as book bloggers. If you know of any, please let me know.  Thank you, as always, for your support.

Every Single Joint

Everyone who has followed my journey since I began blogging knows that holidays have historically been very rough on me. This has continued into the oral antibiotic phase, which I will continue for at least another year. In fact, I have had a much rougher battle against the oral meds than I did the IVs, so much so that at my last appointment in August, I asked Dr. J if we should consider putting the PowerLine back in. The jury is still out on that one. We will revisit the topic in October when I go back to DC. It's been so bad since the removal of my PowerLine that I didn't have the energy to write new posts, as I was adapting the old blog into a book, hoping to get it out there to help as many people as possible. Yesterday I found out that the book should be ready for release in November.

Today I am only two days into my holiday and every single joint I have from my pinkie toe to my upper cervical area is SCREAMING in pain and swollen to the touch. I had planned on trying to get some work done tonight, but I can't concentrate, so I lay here on my bed, from where I have worked for two years now, and write instead. I know I will be parked here for the night because I just went to brush my teeth and every step felt once again like shards of glass were beneath me. My right ankle feels as if it might be dislodged, but I know it's not. The arches of my feet are killing me. Damned Bartonella. And then there is the Babesia which has reemerged. I have been having some rages, now subsided by some meds adjustments, but mostly, that gross sticky night sweat is back and my headaches are more frequent.

This summer I spent the entire time in the dark in my bedroom, with the exception of a few days when I made it outside. I did make it to the deck for 15 minutes here and there. It was, needless to day, not what I had envisioned for my summer. Tonight it's supposed to be in the 40's so, summer is over. I will have to wait until next year. Hopefully then I will feel the way I thought I would this summer. I also had an emotionally rough summer, so I shut down completely for a couple of months. Such is life.

I just try to keep my eye on the ball, but it's hard. So many people just don't get it and while the vast majority of people are very supportive, you would be shocked to know how many unsupportive people there are out there who have Lyme themselves. One would think that we would be a stronger force together, but unfortunately, we have issues with our brains that make us angry, in pain, and emotionally unstable. I saw so much of this in the Lyme Literate Doctor's practice I worked in before that I made a conscious decision not to read other people's blogs or attend support groups, because mostly what I have witnessed is that many people with Lyme, including me some days, are just grumpy. And rightfully so.

People think they know you just from your own writings and this is certainly what we set ourselves up for when we begin writing, but I have always maintained that blogging is a means I choose to process what I am living with. Yes, what I am living with. No two people's Lyme experiences are the same and so my experience is mine alone and not even some of my closest loved ones get it. I don't want to talk about it. It makes me cry. I write instead, hoping it will help people out there. It's what I can offer right now. Maybe one day when I get to the long-term remission phase that Dr. J keeps mentioning, if I ever get there, maybe then I will have the energy to help others in another regard. Until then, this is what I can do.

I have no energy for research, nor can my eyes look at a screen for too long. I tend to write my posts in short chunks. I don't ask others for advice, rather support. I go to my doctor for advice, because I am not a doctor, even though I am very familiar with the clinical side of Lyme.  I am interested in the research, the articles, and whatever is out there, but I do not search for it. Between telecommuting from home as much as I can muster the energy, which has been a dramatic decrease in July and August, taking care of my daughter, and working with my editor and publisher to get the book out at a pace I can handle, I am spent.

Sometimes I stare at the author's photo of me because it took so long for the makeup artist to get my face to look like that I wonder what I REALLY look like to others. I am so used to seeing my own face and now that I am having real issues with hyper-pigmentation on my face, I am starting to look a little different.

It's a long and winding road for sure, but one that I have to be up to the challenge for. Some days I am not up to the challenge and as such, my daughter learned over the summer to get dressed, brush her teeth and come in and snuggle with me watching some cartoons while I lay there in bed with her until one of my parents came over to play with her or take her somewhere.

Today I hired a new assistant, which feels like a relief. Looking forward to knowing someone has my back again, even though it's only been a week since my last assistant moved on. It will be nice to have someone around to help with what I cannot keep up with, which is pretty much everything.

It's 8:15pm now and I have been pretty depressed lately, more so than usual, so I am going to take my nighttime meds and go to bed early, as I have been doing for a while now, even though sometimes I am still up past midnight anyway. I am feeling my fifth anxiety attack of the day make it's way forward, so it's time to acknowledge that all of this venting is not helping my stress level. Time for Plan B, maybe C.  I'll write again in a few days, even though the Lyme talk often sounds like a broken record.

Blue Skies

Blue Skies

He promised me that there would be blue skies 
That if I listened and did as he said, that they would come to me

Better days, happier times, I supposed
I spent months looking up at the sky, never to see any blue
I would stare for hours and hours
Watching the birds fly, first north for the summer
Then south for the winter

Only to return again

I examined each cloud to see if my blue sky might be hiding behind it
Never to be seen, never to be found
I counted the stars, again and again, losing count and starting over
Maybe he meant my blue sky would be found on a dark one on a clear night
I watched each moon as it progressed from a crescent to a full moon
I stared at the sun, wondering if its glare might lead the way
Every raindrop could hold the key to my blue skies, once that final drop hit the ground
I searched and pleaded with whoever was listening in my silent room to find my blue skies.

But no one ever responded

My blue skies, never to be found, I thought
The sky - blue in the air, but never in my heart
I questioned him, quite angrily at his failed promise
That my blue skies he had taunted me with for me months were nowhere to be seen
I felt deceived by the one man who was saving my life
He begged of me to be patient, to stay on course
And so I looked at the North Star and pondered what a blue sky could really be
I waited patiently and stopped searching
And by doing so, I found those skies

Or better yet, they found me

And I caught the blue skies, with my eyes, my arms, my lips
Vowing never to let them go
My heart sang for the first time in many years
And I felt alive under those clear blue skies
And I vowed to never forget the special feeling of something so longed for

Finally found.

My blue skies didn’t fix everything
Nor would I be able to stare up at them for long
But I have never forgotten the feeling, as I vowed
And I find myself again each day looking out the window
Staring at the sky, hoping they will return
Vowing to never forget that feeling

My blue skies.