Wednesday, September 29, 2010

Intravenous and in SF!

I'm back in SF, thanks to a dear friend who has given me a loan so I could live here, near my doctor, my home, my friends. I can already tell the atmosphere of being here has changed my mood and my health immensely. Another great friend has kindly let me stay in their guest bedroom indefinitely.

I have a LOT of catching people up on, a year's worth almost. I can tell you I am doing much better now on my new round of IV treatment (started last week). It is hard at first and certain days I just want to stay in bed all day and curl up in the fetal position and die, but I have been functioning pretty well for someone going through this harsh treatment. At night I often feel really awful and in the day I can function pretty well (many days). The last few days I've been doing well. That means it's working!!

Though I did just experience a really awful day yesterday (after a cyst-busting treatment), which made me feel like curling up in the fetal position with chills and fevers and dizziness and exhaustion and vertigo and confusion and nausea and extreme crying bouts where you feel like you are going to hyperventilate. I haven't had one of these in a while(but I think a lot had to do with my Lyme friend Lindsay's recent suicide. I keep thinking I am ok, but then experience these waves of grief where I see her face and her taking of her own life from this awful disease takes my breath away for hours. It hits so close to home; the grief is something I cannot explain - it makes me so nauseated I cannot eat or stop thinking how closely our lives parallelled).

When I say function, I mean I can live without my parents. I can manage, with help of many amazing friends and some hired help, to get myself fed and do my stuff. I don't have any energy to cook or even go on a full grocery trip, just reheat food and sometimes not even that. I still have word-finding problems, and I seem cognitively fine to most but could not function as an attorney at this point. Fatigue is big, but I am not laid up in bed all day! I even ran some errands, went to the beach, went to a barbecue, saw a movie with friends and went out for dinner (most definitely overdid it)...trying to slowly adjust to being on my own after a year with my parents. Then I realize I've overdone it and I'm so excited to be part of a real LIFE again but I need to take it slow and rest.

The hardest thing is living with an INVISIBLE ILLNESS. All my Lyme friends have this same issue. I go to lunch or dinner with people (friends I know well but who haven't been informed as to the details of the disease for years by my emails) and they have no idea that I may be gasping for air and needing my oxygen tank the whole time, or feel like I'm going to collapse, or exhausted just from walking 3 blocks and want to tell them I'm going to faint, but they see me looking normal, with makeup and some cute clothes on, and VOILA! They think I am fine!

I don't blame them, but it is so frustrating when people ask, "when are you going back to work?" I'm like...hmmm let's see I am attached to an IV pole for 2 to 6 hours a day with mind-altering drugs that are akin to chemotherapy/acid that often make you feel like your brain is going to explode, and monsters are crawling out of your skin, and have a fever, chills, excruciating pain, dizziness, confusion, insomnia, migraines, nausea, and utter exhaustion that makes you sleep 12-16 hours per day and that doesn't even count the side-effects of the meds. I usually do infusions before bed so I can actually leave the house in the day otherwise I would never be able to leave in the day.

People don't see this - none of this is visible - the only visible thing is the picc line in my arm that chemo patients have, but we Lyme patients get to keep them for much longer - a year to two years depending on our treatment. It is frustrating because they don't see your mind and how it doesn't work the way it used to, and I hear from Lyme patients the brain is the last thing to return.

Believe me NOBODY wants to me to return to work and a normal life more than me. My heart BREAKS on a daily basis and my soul cries that I cannot do the meaningful legal work and advocacy for those less fortunate, but I know my limits. And most of you know I am a perfectionist, and pushed myself too hard as it is my whole life. So I am FINALLY listening to my doctor and myself, and allowing for a FULL recover. I don't half-ass anything.

That's why I hope the pictures of me before and after Lyme (CLICK on top picture slide show to get to Picasa album) will illustrate what people do NOT see when they see me smiling and laughing at lunch. Of course I am smiling and laughing with them; I am going to use every part of my being to face this with a positive attitude (when I can, I won't lie and pretend I'm Polyanna all day), peace, and enjoy the moments of gratitude I feel for being able to experience simple things like dinner at a restaurant with friends or even a 20 minute walk (miracle!).

But I am ecstatic to be back in the city that I call my home surrounded by loving devoted friends, my little nieces, good energy, ideas, people, and beauty that I LOVE. And we know love heals ALL.

"Just when the caterpillar thought the world was over, it became a butterfly." Welcome to journey into something I thought was the most horrible traumatic torturous unfair experience ever (and still do on bad days). But it is not. It is a journey into something I never expected and has and will change me forever.

After losing all pieces of my identity and going through the stages of anger, grief, fear, despair, for years, I have been transformed in so many positive ways. I find the real me underneath, and I have realized that "Nothing that is real, nothing that is of value, is ever lost."~Echkart Tolle.

Despite this disease stripping me of my physical ability, my cognitive ability, my career path, my job, income, my sanity, mental stability, my family relations, money, home, car, the ability to hike, mountain bike, camp, snowboard, rock climb, drink at the bar, dance, go to happy hour, see concerts, have a full social life and normal relationships, my ability to make a sandwich sometimes, and all the other material possessions or attributes one has in life to define themselves, despite losing all that, I realize I will never lose myself. And really that is the only thing of value as Echkart Tolle states - the human being underneath all those labels. And SHE is still there, and seeing her (me) without such labels that I have applied to myself my whole life has been a completely eye-opening experience for me. Most people never have the opportunity (yes I said opportunity) to encounter naked reality from their true being, without those labels.

As one of my friends said, one day I will look back at this as a gift from the Universe that most people do not get to experience. It sounds strange, but in approaching this disease or any oppressive circumstance with gratitude, it changes you and your life forever. Don't get me wrong - I have days when I throw things at the wall and break them, cry until my face is drowning in a puddle, stare at the wall with disgust and outrage and frustration that I cannot do what other 33-year olds do, and for 4 years now.

But over time, you come to a place of semi-peace
. And then some days utter gratitude and full peace. And then the next day frustration and crying, but over time you come to the beautiful adage, “Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.”.


More to come...wanted to get the blog up and running and will come back to this later and give you a recap of the most ridiculous, hilarious, screwed up years of my life...the treatment, the experiences, all of it...

With gratitude and love to all my friends and my parents for making it possible for me to Monamorphosize...


  1. Mona,
    I just viewed your pictures and have read some of your story, and I'm stricken by how alike our experiences have been. What has hit me even harder though, is how beautiful and how brave you are. Mona, you are a badass. I hope you still wear your sparkly cape because you are most definitely a superhero all in your own.

    Hang tough,

  2. yeah. i'm ready to have my brain back, too. poo on lyme disease. much love, mona!!