Beauty and struggle

The last few weeks have been riddled with ups and downs. I'll start with the ups. I am constantly shocked at the capacity of the human heart, even though I know it's complexity and beauty. This blog must start out with my immense gratitude for the benefit yard sale that was put on by my amazing friend Jamie.

Jamie and I were inseparable for a good amount of our middle school days. I remember the fun we had, the noise we made, the trouble we got ourselves into and the energy we were able to expend on an around-the-clock basis. Jamie and I have not spent much time together in our adult lives, but have run into each other here and there over the years. She beams with energy, has a booming laugh and a strong personality. She's constantly working on herself and dealing with the things most people don't have the strength to face. I was surprised when she contacted me on Facebook after reading my blog and said she wanted to do something to help. She came up with the brilliant idea to do a benefit yardsale and donate the money to help me with my medical expenses. It could not have happened at a better time, as my bills are piling up and my insurance payment alone is $1000 a month. It seems that just when I start to panic, something beautiful shows up. I'm learning to skip the panic all together and rely faith. I'm working on it. Jamie saw a need and wanted to make a difference. That is beautiful. And, it is rare. I can't even tell you the countless hours she put in organizing the event. She drove all around picking up stuff, stored it at her house, organized it and ran an all day sale. She was so enthusiastic, selfless, and hardworking. I watched her at the sale juggling a billion things, dealing with difficult people and still checking in on me throughout. She moved with absolute grace and dedication. And, all for someone that hasn't been actively in her life in a long, long time. She did it just because she wanted to be of service and wanted to make a difference for someone else. She made a huge difference in my life. Huge. Many people donated items. I was humbled, touched and overwhelmed. Thank you to everyone who was involved. Words can not do my gratitude justice. Even perfect strangers donated huge items. I was given things to help with my treatment and healing, including the most comfortable bed on the planet. It allows me to lift my head and feet and helps with chronic pain. The first night I slept on it, I slept for several hours without waking up, which is unheard of these days. The yardsale was a total success and it was such a relief to go to my multiple appointments on Monday and know that I was able to pay for them without worry. I am a lucky girl.

The downs.
My appointments were a little rough. One of the big hopes was that with the Lyme treatment the uterine tumors might stop growing. I was really holding on to the possibility that I may be able to avoid a hysterectomy if I could get my immune system functioning better. But, it did not happen that way. The exam revealed that the tumors have, in fact, grown over the last few months. The largest one is occupying a major portion of my lower abdomen now and creating some complications. The hysterectomy is inevitable. My gynecologist says that I can wait a little longer, but the longer I wait the more complicated the surgery will be. If I wait too long, it may become a sudden need. I'm under close observation. I will begin seeing my new doctor on the 10th. He is an infectious disease and internal medicine specialist. He just moved here from the east coast and has experience with Lyme disease. I am so relieved. He even takes insurance which will be helpful. He and my gynecologist will decide together the timing of the surgery. I still was holding onto the hope of a miracle and conjuring up dreams of being the girl that wasn't supposed to give birth, but somehow still would. That is officially no longer a miracle I will see.

I started several new meds about 3-4 weeks ago. I was on oral antibiotics, several other meds and supplements and getting one intramuscular shot a week. That shot was pretty hefty, at 2+ mL into the muscle every seven days. The new intramuscular shots are even heftier. It's a stronger drug that is more specific in the way it hits the body and attacks. The drug itself burns quite a bit and is reconstituted in lidocaine. The volume is 4.2 mLs into the muscle twice a week. There's no getting around it, it just sucks. The lidocaine is supposed to numb the area, but really just stings and isn't any better. It's such a high volume and given so often that I am struggling with it. My muscles don't really have time to recoup before the next shot is due. I am going to have to have the port and PICC line put in soon. I was hoping that they could possibly do both surgical procedures at once and avoid having to have two surgical procedures and hospitalizations. But, I guess the insurance company frowns on double procedures and is making it impossible to combine them. You'd think they'd like the fact that they wouldn't have to pay for two seperate anesthesias and hospitalizations. Thank god I have loved ones and this amazing bed to help me through the surgeries. The new oral meds are also taking some getting used to, but I am putting along and making do.

The new drugs are rough on my system. There's no getting around it. I have been in bed quite a bit. The good news is that the shittier I feel on them, the better the sign that they are working. I have to keep focusing on the positive and remembering that they are working and that light at the end of the tunnel is shining. I am incredibly fatigued, have lots of muscle spasms, joint flair ups, and tons of nausea. After attending the yard sale, I was in bed for 17 hours straight. I asked my doctor who on earth has to go to bed for 17 hours after a yard sale (and I wasn't even the one doing the work!) Her response was simply "Lyme patients", with an understanding smile. I'm not used to being so limited. I miss the days of a billion responsibilities. I used to just hop from one job, volunteer assignment, social engagement to etc, to the next. I have had several crying spells since the new drugs started. I can't tell if it is just a side effect or if I'm experiencing lyme induced depression or just depression brought on by my altered life. I just go with it. My jack russell has a new trick to help. When I cry now, she cries with me. It is totally absurd and makes me giggle, often pulling me out of my funk. It's too bad I can't do an impression of how she sounds in this blog, because it is so silly. I love that I find myself laughing and rubbing her belly and pulling out of the crying spells. It's the little things that so often make the big differences.

I started my art class. The teacher made an exception and let me into the already overflowed class. It's a challenge with the body pain and cramping hands, but it is worth it. It feeds my spirit. I love painting and creating. I have already fallen down in class and watched the shocked faces and whispers that followed. Today, I had my shot done and then went straight to class where I began to have a herxing episode while working on my painting. I managed to get myself into the back closet while tremor-ing to hide till it passed. When I emerged from the closet, there were staring, concerned faces pointed in my direction and some questions from curious classmates followed. One guy actually asked me if I was having withdrawals! Haha. I hadn't thought of it looking that way. I explained to him what was happening and reassured him that I was fine. One difficult part of all of this is watching the people I love worry about me. I know it looks scary and is hard on people. Last week when I was up North, a very good friend of mine got very upset watching me herx. I want people to know that I am okay and that it probably looks a lot scarier than it is. I wish this didn't have negative effects on my loved ones too. My Dad looks so worried sometimes and I can see this ache in him that I long to take away. It is worse than the actual symptoms sometimes.

Despite the struggle, I see all the beauty and I am trying to stay focused in that direction. That's what matters. Life could be so much worse and in the grand scheme of things, this is not so bad. I'll keep fighting. With friends and support like I have, I have so much to fight with.