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(If you want to turn the music off, click the pause or stop button above)
You're listening to "Autumn" by my brother, Patrick.
Autumn
The summer sun has faded to autumn, The golden fields are turning to gray. On the streets rainbows are falling, The world looks different each new day.
And may your harvest be great, your glass never empty. May you have love that lasts the night. I tip my head to the stars for your good fortune. May all your days be warm and bright.
It is the time when light passes under, It is the season when life goes to ground. The northern wind awakens the hunger, Scarcely is the spark of life found.
May your harvest be great, your glass never empty. May you have love that lasts the night. I tip my hat to the stars for your good fortune. May all your days be warm and bright.
So gather round; the fire will warm you. And say a prayer for those who've passed. With melody I'll try to restore you Until we meet again at last.
And may your harvest be great, your glass never empty. May you have love that lasts the night. I tip my head to the stars for your good fortune. May all your days be warm and bright.
And may your harvest be great, your glass never empty. May you have love that lasts the night. I tip my head to the stars for your good fortune. May all your days be warm and bright. May all your days be warm and bright. May all your days be warm and bright.
MY STORY:
In the summer of 1997, when I was 15, I was working at a summer camp in Plymouth, MA. In July I got the flu but didn't think much of it. It went away on its own and I seemed to be fine. Then, in October, I started getting severe headaches that would incapacitate me for weeks, I had horrible fatigue, and depression. I went to a few doctors, had lots of tests done, and eventually was referred to a Lyme disease specialist. I was diagnosed based on my symptoms and history because my tests were negative, as they often are with people who have been infected for a long time. I've probably been infected since I was about 8 (1990) or younger.
After I was diagnosed, I was put on oral antibiotic treatment and I got better to a point. But after some complications from the treatment I stopped treatment. I managed to live for a few years without treatment but in September 2000 when I went off to college, it was very apparent that I was too sick to continue without treatment any longer. So, I found a new doctor because my old Lyme doctor wasn't working well for me. I was put back on oral treatment and eventually was referred to a doctor in New York because I had a difficult case. I was diagnosed with two co-infections (Babesiosis and Bartonella henselae) and was put on treatment for them. After this, I decided I needed to pursue IV treatment because the oral treatment I was doing wasn't helping me very much.
From June - December 2002 I was on IV antibiotics with a PICC line in my arm. As a side effect from one of the antibiotics, I developed gallstones and had to have my gallbladder removed in November 2002. I had to stop IV treatment at the beginning of December 2002 because my insurance company decided I didn't need it any longer. I made significant strides forward during these six months of treatment but I was not healthy when it was stopped.
I continued with oral treatment after stopping the IV antibiotics but they weren't able to keep me on the path of improvement and I eventually began relapsing completely. I was bounced around from doctor to doctor again and didn't find anyone who I felt really knew what to do and understood me at all. So, I kept searching for a good doctor, because I knew a good one was out there for me. In May of 2004 I found a holistic MD who uses a combination of antibiotics, herbs, and supplements. First I was treated for Babesiosis and Bartonella again since it seemed I never got rid of them. On July 14th, 2004 I had a single lumen port-a-cath (which I've nicknamed "Winnie the Port") put in my chest to try IV Rocephin again. I did three months of IV Rocephin, 1 gram twice a day four days a week. Unfortuately, I developed GI complications, including "sludging" in my bile duct which basically caused "gallbladder" attacks, although of course it wasn't my gallbladder. This means that even without my gallbladder, this medicine causes "galladder" problems so I can't be on it anymore.
In October 2004 I started seeing a new Lyme doctor in upstate NY (about 4 hours away) and began a long testing process to see if there are other things contributing to my difficult to treat case. So far, we've discovered that I have Reactive Hypoglycemia, Hashimoto's Thyroiditis, and Neurocardiogenic Syncope, all of which could be caused by the Lyme disease and other TBDs. I began taking various vitamins and supplements to help get my body in better shape so I could handle Lyme treatment again. In May 2005 I began daily IV hydration with a liter of saline with vitamins and minerals added. The IV hydration is to try to help my energy level and neurocardiogenic syncope as well as giving my stomach a break from the oral supplements. In July 2005 I started back on IV antibiotics with three months of IV Clindamycin. This antibiotic didn't help me (and made me feel worse because of its side effects). After those three months were up, I was shocked to find that my insurance company approved a switch to IV Primaxin (we had to fight for the Clinda to be approved) and I began on Primaxin on Halloween. This treatment did bring improvement and I continued on it for almost 3 months, increasing the dose after about a month, but had to discontinue it to address a severe and sudden general crash and specific serious crash in my GI tract as well as my immune system. My GI problems have now been diagnosed as Gastroparesis and I am on treatment for that with some improvement.
On September 14, 2006 I began treatment again with IV Primaxin with slow but noticible improvement. At the end of February 2007 I began pulsing in IV Flagyl one week a month to get at the cyst form of the Lyme bacteria. I continued with this combo until the end of May when I switched from IV Primaxin to IV Zithromax along with the IV Flagyl and added in another med (Mepron) to treat the Babesiosis. However, side effects of tinnitus (ringing in the ears) and ear pressure forced me to switch antibiotics again and I switched to IV Levaquin along with a bunch of new supplements to hopefully treat the Babesiosis, Bartonella, and Lyme. Unfortunately, I had bad side effects again (this time tendon pain) and had to stop the Levaquin and ended up taking about a 6 week break while trying to get through the summer so I could go on IV Doxycycline (which has some sun sensitivity as a side effect). I continued with the IV Flagyl one week a month and began the IV Doxy in early September 2007. The Doxy did seem to keep me stable but I didn't really notice further improvement. However, when treatment was stopped (there were a few interruptions) I would get significantly worse so the treatment was necessary.
When the summer rolled around again, I switched from the Doxy back to IV Primaxin, which I had trouble tolerating. Unfortunately over Memorial Day weekend I got sick with high fevers and more GI problems which have continued through the summer and now into the fall. The fevers usually get over 103* and sometimes go as high as 105*. Testing has been positive for Babesiosis for the first time ever and it seems that is what is causing the high fevers and other problems, including worsening anemia despite iron supplementation. Babesiosis is similar to Malaria and in my case right now it is acting very much like Malaria, more so than my primary care doctor has ever seen in her patients. Over the summer I began treatment for it with IV Zithromax (but at a lower dose than I was on before to minimize the ear problems) and Mepron as well as an herb called Artemisinin which is pulsed in. I am tolerating the treatment alright but the fevers continue and I am getting more and more worn out as each fever takes a lot out of me and I don't have a chance to really recover from them and they come pretty frequently (sometimes daily) so it has been difficult and is frustrating. At the beginning of October the treatment was increased in hopes of finally getting rid of this awful infection! I tried an IV antibiotic called Claforan for the Lyme and tolerated it well but after a month I suddenly developed a full-body rash which was a reaction to it, so I can't use that anymore. Just another bump in the road, I guess. I now on 2 liters of fluids a day instead of 1 which is helping quite a bit with a lot of things and I get amino acids and vitamins and minerals with the hydration so my infusion company considers it to be a version of TPN, although I usually refer to it as hydration.
In August 2007 I underwent further testing on my stomach and found that my gastroparesis has not gotten any better and may actually have gotten worse since April 2006 so further treatment is necessary to help my stomach emptying and severe reflux. On October 30, 2007 I underwent an upper endoscopy with botox injected into the end of my stomach (my pylorus) to hopefully allow my stomach to empty food faster. Unfortunately that didn't seem to work and we are rapidly running out of options. There is a possibility that I might have surgery for my reflux and gastroparesis but for now I am just dealing with the symptoms because I want to avoid surgery if at all possible.
After a three semester long medical leave of absence from September 2004 to January 2006 I went back to school part time taking it a class at a time. I took one class at Wheelock in the spring of 2006, one class in the fall of 2006, completed an independent study in linguistics in the spring of 2007 and I have taken various classes online through Oregon State University. I slowly chipped away at my remaining credits and officially graduated in December 2007 with a major in Human Development and a minor in theater. In September 2007 I started a job as an assistant preschool teacher in Newton, MA and moved into an apartment very close to the preschool. I am continuing to teach my theater classes down at home on Tuesday and Thursday afternoons which has worked great with my schedule at the preschool. I am continuing this now in my second year at the preschool and I've moved into a new apartment with a friend (she was a teacher at the preschool but did not return there this year). This is beginning of a new chapter of my life and I hope to leap into it and begin to find the next path (or paths) of my life!
My life has been greatly affected by Lyme disease and the other tick borne diseases I also have. Since I have been living with it for most of my life, I often wonder what parts of who I am are really me and what parts are the disease. But, from day to day I struggle to keep on the positive side and look at each day as the possibility for something good to happen. Some days it does, some days it doesn't. Some days I make it out into the world and get stuff done and have some fun. Other days I lie in bed and watch tv, unable to even gather enough energy to get up to take a shower. But everyday I keep going. Giving up is not an option, it never will be, so I keep fighting. And maybe one day I'll find my way to health again. In the mean time, I only hope to find my way to peace. I’d rather be struggling to fly than standing on the ground watching all the birds above me.
I’m trying to tell you something about my life. About how I struggle from day to day To simply live. About how I wish, hope, pray. About how I yearn to rid myself of the pain. About how this body is not mine, Not me. I am not this body. I am simply contained within it.
I’m trying to tell you something about my essence. About my true being. About how I long to break free from this body, From this vessel that has endured so much, And be free. Fly with the wind, Laugh with the trees, Dance with the eagle as it soars through the sky, And be free. Be free to be me.
I’m trying to tell you something about my soul. About who I really am. About the way I search for belonging, For acceptance, For where I belong, For my place in this world. About how I long to feel warm, And safe, And know who I am, And know there is someone who knows me, And loves me, And will always love me. Someone who will hold me in their arms when I cry, And calm my fears, And complete my soul, My longing, My belonging.
I’m trying to tell you something about love. About how I long to look into someone’s eyes And see myself reflected back. To see myself through the eyes of love, Someone else’s love for me, Unconditional, Unwavering. About how I sometimes wonder if this exists, If there is really someone out there Who will look into my eyes And see all the way to my soul. And bring out of me all that is beautiful And hidden Deep within me. About how I want to know that I’m complete, Loved, Happy, And that I make someone else feel the same way.
I’m trying to tell you something about who I really am, About my true being, My core, My center. About how I am just energy, Just light, Pure and white and simple. About how I radiate and shine. About how few can really see me. Few really know me. Few have seen my light. About how it is protected, Deep within me. About how I’m afraid that if I let it shine free, It will be lost forever. About how I long to let it shine free, To let everyone see how beautiful it can be, How beautiful I can be, How free, How real, How pure and good.
I’m trying to tell you something about my life. About how this body is not mine, Not me. I am not this body. I am simply contained within it. --October 17, 2003
(NOTE: If you e-mail me, please put "Caringbridge" somewhere in the subject line or I might mistake it for spam and delete it.)
I have been putting together fundraisers for the Lyme Out Retreats that I have organized. I am selling Magnetic Lyme Disease Awareness Ribbons. For more info about them, e-mail me or click on the picture:
Visit my Lyme Disease Awareness Shop at Zazzle.com. You can get various Lyme Disease Awareness clothing as well as notecards and 10% of all purchases go towards the Lyme Out Retreats.
Journal
Tuesday, November 18, 2008 3:34 PM EST
"One small cat changes coming home to an empty house to coming home." --Pam Brown
Hi Everyone,
I'm not going to do an update on me today because I have the sad news to report that my beloved cat, Elise, passed away yesterday. She was 14 and had been sick for quite a while with FIV and then with probable lymphoma in her brain and on her kidneys so it wasn't entirely unexpected, but that doesn't make it easier to deal with the loss of a loved one. We got her (well, she was originally my cat) when I was in 7th grade and I still remember those first few days and months with her very clearly. My favorite memory is from the first night that she was with me. I was worried she would get lost in my room so I had her in my bed with me for the night. She slept for the first half of the night and then I was awoken to her down at the foot of the bed under the covers playing with my feet! She was spunky and sometimes had a bit of an attitude, but that was just who she was. I think I'm having a harder time dealing with this since I was in the hospital and then only home for about 12 hours before leaving to come here to Florida so I really didn't get a chance to spend any time with her for the last few weeks. But perhaps that's how it was supposed to be and how she wanted it to be. I did get to say goodbye to her over the phone as my mom drove her to the vet's office and she will be cremated with her ashes returned to us. I plan to spread most of them around the cottage in Maine and possibly keep a little bit but I haven't totally decided about that yet.
Here is a slideshow of Elise from the last few years. (I don't have any pictures of her from when she was a kitten on here because that was before we had digital cameras.)
I'll do an update on me in the next few days but I won't have many pictures since I found out that I left all my computer connection cords for my camera and cell phone at home so pictures will have to wait until I get back home. Thanks so much for stopping by. If you have pets, give them a hug and appreciate them while they're here. Have a good week.
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