Happy Thanksgiving - Grateful

I am grateful for the unending, unconditional love and support of; my sisters, parents, brother-in-law, nieces and nephew, boyfriend and friends. I am grateful for friends (you know who you are), who have continued to check in on me, make me laugh, remind me who I was before I got sick and not let that part of me fade away. I am grateful to have an amazing man in my life who fell in love with me even though I felt broken. I am grateful I am still standing after the past 2 years. I am grateful to have a confirmed diagnosis. I am grateful that I am lucky enough to have the amazing people in my life that I do. I am grateful that I got sick, because I needed to learn the hardest lessons and I wasn't listening before. I am grateful that I am privileged to understand what it means to honor and appreciate my body. I am grateful I truly understand what it means to say, "you don't have anything if you don't have your health." I am grateful that illness taught me what the real priorities in life are. I am grateful that illness showed me that the only things that matter in life are the connections I have with others, and to help and be of service to others. I am grateful that illness taught me perspective and that my heroes are now the doctors and researchers who are literally saving lyme patient's lives every day. I am grateful to have met other lyme patients, whose courage has shown me the way. I am grateful that I have the means to see a doctor who can help me, get the medicine I need, and to be in a place I can heal. I am grateful that this illness showed me I am stronger than I ever knew I was.

Igenex Test Results - Babesiosis Confirmed

I see Dr. X. for my follow up appointment. My sister and Mom go with me because they have been on this journey with me and are hoping, like me, we will finally get an answer. Up to this point, we have been going on the assumption I have lyme based on a clinical diagnosis. My Igenex test results show borrelia burgdorferi (Lyme) result and a positive babesiosis (co-infection). After a year and a half of limbo, too many doctors to count and questioning my own sanity, I have validation. I hear a character on a show say, "there is no place as lonely as not being believed." I wouldn't have known what he meant prior to this experience, but after having my own doctors make me feel like I am crazy, I understand. Lyme testing is unreliable, and there are many factors that come into play to determine if someone gets a positive test; timing of the test, the person's immune system, what kind of test, amongst others. Lyme patients who don't remember a tick and never saw a rash have to insist that their doctor test them, often to loud protests from said doctor. I had Bell's Palsy (paralysis of the left side of my face) which is a classic lyme symptom a year and a half ago. I asked the neurologist at the time if it could be lyme and he gave me a resounding 'no." I was eventually tested with the standard Western Blot and Elisa tests by various rheumatologists, always getting a negative result. What I didn't know then that I know now is that approximately 50% of patients who have lyme get a negative test result. If I had just gone to Igenex in the beginning, I could have avoided almost 2 years of pain, frustration and fear. And saved a lot of money!

Dr. X. also tells me that my cortisol levels are below normal range. In a healthy person, cortisol levels rise in the morning upon waking and slowly go down throughout the day, hitting a low point in the evening so one can go to sleep. My cortisol level is in a flatline, with no spike in the morning. This explains the severe exhaustion upon waking. When the cortisol doesn't go up, I have no energy to get out of bed. I asked every doctor along the way about my cortisol levels, and only one of them entertained the idea that there could be a problem with it. She tested me for it, but told me it "was fine." Perhaps at the time it was, but I have told my sister for two years that I have constantly felt like I am in "fight or flight" mode and that something is wrong. I learn from this experience to never doubt my own intuition again.

Dr. X. gives me Mepron and Zithromax (standard for babesia) and Hydrocortisone. The hydrocortisone (a steroid) is for the cortisol. There is no "synthetic" hormone of cortisol, like there is for progesterone or estrogen. But hydrocortisone, (in small doses), closely resembles cortisol and can help raise the levels. This, hopefully, will allow my sleep to regulate. It has been SO SO SO long since I have had a night's sleep in which I slept through the entire night without waking from nightmares, sweats, or noises. What a joy it will be to actually SLEEP. He also gives me some supplements to help balance what the antibiotics will do to my gut. I am now taking:
Kolorex & Probiotics (candida)
GI Caps (for the gut)
Vitamin D
Potassium/Magnesium
Mepron
Zithromax
Hydrocortisone

I feel like I have been in a dark tunnel for two years. Once in a while a very tiny shaft of light would burst through in the form of a day here and there of feeling good, or the love of my family, friends, and boyfriend. Along this journey, I have been so deeply depressed. Some days there has been no hope and I had no idea how I was going to get through the day. Now that I have a confirmed diagnosis I can finally see a big light at the end of the tunnel and have something good to move towards. I can allow myself the luxury of thinking what it will feel like to actually run again, or have the energy to get through a day. I know I still have a hard road ahead while I fight to recover, but at least now I am not in some infinite limbo. I have hope in my heart again for a future that I couldn't see for a long time.

It's My Life

"I just wanna live while I'm alive." Love these lyrics. Because living like this is not living at all.



It's My Life lyrics
Songwriters: Bon Jovi, Jon; Martin, Max; Sambora, Richard S;

This ain't a song for the brokenhearted
No silent prayer for the faith departed
And I ain't gonna be just a face in the crowd
You're gonna hear my voice when I shout it out loud

It's my life
It's now or never
I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life

This is for the ones who stood their ground
For Tommy and Gina who never backed down
Tomorrow's getting harder, make no mistake
Luck ain't even lucky, gotta make your own breaks

It's my life
And it's now or never
I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life

You better stand tall
When they're calling you out
Don't bend, don't break
Baby, don't back down

It's my life
It's now or never
'Cause I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive

(It's my life)
And it's now or never
I ain't gonna live forever
I just wanna live while I'm alive

(It's my life)
My heart is like an open highway
Like Frankie said, "I did it my way"
I just wanna live while I'm alive
'Cause it's my life!

From Hell to Glitter in the Air

I've just spent a few days in hell. I took the antibiotic minocycline and it made me so dizzy I couldn't stand up from the couch. When I did, I was weaving all over the place and bumping into walls. I was so nauseous I couldn't eat, but the ironic beauty of antibiotics is that I must eat to take them. Gr. My body is so out of whack again and I can't seem to get it back on track. I am experiencing severe pain, like I experienced 2 years ago at this exact time before everything came crumbling down. At least this time I am armed with information and know that a) I'm not going to die, b) I have a great doctor in my corner who is fighting this with me and c) family and friends know what is going on and I have a lot of love and support.

I feel like I'm hanging on by my fingernails when I am in that much pain and it is really hard to find the willpower to get out of bed in the morning. I lie there and for a few minutes I feel kind of okay, but I know that as soon as my feet touch the floor the pain will come rushing back. I don't know what the day ahead is going to hold for me, whether I will feel ok or be so sick by dinner that I can't move. I'm experiencing new symptoms now too that are scary; my actual bones are starting to ache, and sometimes when I walk the bones in my left foot have stabbing pains running through them.

My friend H, who also has lyme, encourages me to let go of the facade that I am strong and can do this on my own. She asks me where my fortitude comes from, and supports me being honest with people around me about how much I'm struggling. I don't know why I'm still doing this, but it's like I want to protect my family, boyfriend and people close to me from knowing how much pain I am really in. I think there is a part of me that feels like they can't handle that level of pain. But she reminds me that they are adults, and that they can decide what they can handle. So I have a conversation with my mother in which I fall apart. I have been holding it together for months, trying to mentally will myself into being healthy. I have been in complete denial that I am not getting better. It is just too hard to accept that I am going down the rabbit hole again and that this time it might be much worse. I have been trying so hard to be normal; social engagements, trips, and plans on my calendar. I've had to cancel most of it because I can't get up off of the couch. I have been in denial too about the symptoms that are coming back. I just can't accept that my body is betraying me again. My Mom takes matters into her own hands and calls Dr. X. He prescribes some painkillers and also suggests I come in immediately for a vitamin i.v. drip. My Dad takes me and it is the best thing I could have done. As soon as the drip gets into my body I feel a release that is beautiful. I start to get drowsy and cozy and my body feels warm and good. Who knew vitamins and minerals could make me feel like this!? It's a party in body, but this time in a good way!

I have an acupressure session that is long and intense. The women who do the session are true healers and touch knots and pain in my body that feel like they have been there for months. I feel release so deep that I alternately sweat and have chills. They touch certain tense places on my body and ask me what I am holding onto there. When they touch my solar plexus it hurts so much I almost throw up. The wise woman, D., says, "what is being held here?" I tell her, "my fear that I'm going to die and that I am so alone." As soon as I say that, the pain releases. Amazing.

I watch a "Behind the Music" on the artist Pink. What I am inspired by is that she has always done what she wants, said what she wants, and followed her gut. I wonder how she would handle having this illness and realize that she would probably do everything she could to kick it's ass and would become a spokeswoman for the disease. She is definitely someone who is not afraid to speak out. This performance at the 2010 Grammy's was incredible. It was vulnerable and ballsy at the same time. It reminds me that I can be both too.

Running in the Rain

I go to my college to support my friend D. as he is inducted into our Athletic Hall of Fame. It is a good and bad weekend. It is great to see people I haven't seen in a very long time, but it is also hard because I am very sick and struggling to get out of bed. I have the headache that is relentless, my neck is stiff, my period is killing me. By sheer force of will and medication I get myself to the dinner.

The dinner and athletes inspire me and remind me how when I was an athlete I went to practice every day no matter how cold, windy, wet, or nasty it was. It reminds me that I spent hours throwing a lacrosse ball into the net, lifting weights, running miles in the rain, just to be better. And sometimes, despite my hard work and that of my teammates, even after leaving our guts on the field and playing as hard as we could, we still lost. But the next day, I went to practice again. I didn't complain, I didn't think, "why do I even bother going to practice if we're going to just lose?" I showed up, I ran my drills, I joked with teammates, and I marched forward. It is like that with lyme disease; I do my research, I eat healthy, I try to get to yoga, do what the doctor says, take my medicine even if it hurts. But I feel like there are so many days that I lose. But thinking about being an athlete inspires me because after a loss I never would have made the choice to just quit. It never would have crossed my mind. If anything, it made me more fired up to go back to practice the next day and play harder.

I am so depressed today because I am now going to start another round of antibiotics and am waiting for test results yet again. But if the choice is to give up or move forward I realize that the athlete inside of me will not allow me to give up. I will keep relentlessly running in the rain.