Tuesday, August 27
It is Tuesday morning at Dr. S’ office. I have recovered from the draining intensity of the “hospital” weekend and lie in my reclining wheelchair holding my bottle of parasite cleanse, as if it were a bottle of liquid enemy. The prescribed dosage? 30 drops twice a day. I convey to my nurse the events corresponding to the last time I did a parasite cleanse. Prescribed dosage was the same, 30 drops. I started with one drop, and ended with one drop. I was severely sick for two weeks.
I tell her that doc wants me to start with 15 drops. I give her a look of meekness in an obvious attempt to garner sympathy and rally her to my side.
“I think 15 drops is too much for you,” she says. Mission accomplished.
“What are the possible side effects?” I ask.
“Some people throw up, immediately and violently.”
I look at her, then around at approximately 35-40 patients in the room either getting or waiting for their IV medicines.
“I really don’t want to throw up in front of an audience of forty.”
I think for a few minutes, “I have anti-nausea medicine in my bag. Should I take it?”
“Yes, good idea. Let me go talk to Dr. Crozier and see what he thinks about the dosage.”
I finish taking the nausea medicine as the nurse returns.
“Doc said to start with 10 drops.”
I was hoping for 5, but know it’d be a waste of energy to haggle any longer. She administered the drops under my tongue and I waited.
“If you make it past an hour or so, you should be fine.”
I lie still for 20 minutes or so, waiting for Armageddon, but it doesn’t come. I relaxed a little and started talking with other patients.
When I first arrived at the Wellness Center seven weeks earlier, the thought of being in that large, open room with all those other patients was overwhelming. Having been isolated for so long, the idea of being near or with a crowd of people was both foreign and terrifying. The room was always packed, people from all over the country and beyond, just hoping to get better. There was a smaller overflow room but even that brought on panic at the thought.
Way back in the beginning, on the first day when I was receiving detox treatments, I requested to be taken to the overflow room. I remember not feeling well and having a few near panic episodes. The cacophony of people’s voices and the loud whir of the air-filtration system beckoned my PTSD symptoms. It gladly heeded the call. I hid behind closed eyes and familiar, comforting music dripping into my earphones.
Quite astonishingly, I started to feel better after the first day, and my voice even came back. What a beautiful gift. Talking. A luxury and a blessing (if you have been a spouse for over 10 years, you may not have the same mindset). I did without speaking for the good part (bad part actually) of 2 ½ years. Gaining my voice back was like getting a bridge built from the island that is me to a village on the mainland.
As I lay waiting for the hour to pass, a few patients stop by to chat. I am surprised at their desire to tell me how much of an inspiration I am to them. Me? Seriously? I never dreamed that my stubbornness and hardheadedness would one day be a source of inspiration to fellow Lyme sufferers and even to some who are living otherwise healthy lives. I always pray that God enable me to live a life worth living, regardless of my physical disabilities or health condition. But what do I do with this?
In the early stages of my illness, when doctors told me that a diagnosis of serious neuromuscular disorder such as Lou Gehrig’s Disease or Guillain-Barre Syndrome were real possibilities, I had to dig down deep and pray hard about how I could possibly live a life worth living. How could I contribute to other people’s lives if I was unable to move any of my body parts? After much prayer and soul searching, it came to me that if all I was able to do was pray for others all day, then that indeed was a worthy life. My fear of having those dreaded diseases diminished and I knew the only way I could survive this illness was to align my will with God's and trust He would lead me through this journey for some greater good. It felt comforting to be even a small part of that greater good. It's much easier to battle when I believe I'm helping the good team win. This illness is evil. When I pray the Our Father and it comes to the end part that says, "and deliver us from evil," I think of this illness. God will deliver me from this illness. There is no way I'm going to give up the fight and allow evil to win.
On a lighter note, it's funny how often I've been inspired to keep fighting by the Black Knight character in the movie Monty Python and the Holy Grail. Granted, he’s fighting for the wrong side, but his insistence that every life threatening injury is "'Tis but a scratch," is both humorous and incredibly endearing. That's a credo I now try to live by!
I have learned that we, Sponaugle’s patients, are each others inspiration and strength. We understand what each other is going through and the support given and received is quite beautiful to witness. In the real world back home, if I am honest, I felt like a freak at times. It is not often you see someone being transported in a reclining wheelchair. Here, I am just another person battling the same disease, sharing common challenges and inspiring hopes of recovery. That is why I call the wellness center The Safe House.
Wednesday, August 28
I wake up around 7:00 AM and immediately feel the “air hunger” that sometimes comes with Babesia. I have had it worse, but know that if I take the parasite cleanse again today, even at the same dosage, there could be serious trouble. My Sponaugle appointment is at 11:30, but first, I have to go to the hospital at 10:00 to get a PICC line put into my arm. A PICC line is a long, flexible tube that is inserted into a vein in the upper arm. It’s advanced until the end is right near the heart to allow intravenous access. It is necessary for people whose veins start to collapse after too many pokes and therefore their veins become inaccessible to needles.
My assigned nurse, let’s call him David, is quite confident in his abilities, so this enables me to relax a little bit.
“I’ve done over a thousand of these insertions.”
“Good. All I need is one.”
We begin to talk a little as he prepares for the procedure. Discussion somehow leads to our divorces. Even though we just met, we feel comfortable talking about our shared wounds.
“Yes,” I say, “I have forgiven my ex. I even pray for her and her new husband. I don’t harbor any ill will towards her; but the pain just doesn’t go away. Even with all the pain and uncertainty I’ve had with this illness, I would say the pain from the divorce is still much worse. After I am physically healed, I know I need to address the emotional issues.”
“I understand what you are saying.” David responds coolly, “I have the same pain that is not going away. After all these years, it is still there, affecting my relationship with my current girlfriend. I need to see a chaplain.”
And that was the end of the conversation. Stoically discussed, but understood that ghosts lie just below the surface.
David is now ready to start the procedure.
“Should be over in less than an hour.”
Two hours pass.
“This is the first time in two years I’ve had to go to someone’s left arm. Sorry for the pain and inconvenience.”
“Not a problem,” I say, “Just another chapter in the book.”
It’s 1:30 and we’re back at Sponaugle’s. Nurse assesses me and leaves to speak with Dr. S. She returns and says that instead of doing the parasite cleanse, we are going to do a detox drip followed up with some IV fluids.
I smile and breathe a little easier.
Friday, August 30
Friday evening after a lymphatic drainage massage and a quick bite to eat, Williams and I drive quickly to see the sunset at Clearwater Beach. Since it’s Friday, all the parking spots are taken. We circle around the parking lot a half dozen times, losing valuable minutes as the sun is about to set. I tell him to pull into an illegal parking spot which enables us to see the ocean clearly. What can I say? It’s the rebel in me. Because we are in a front row spot, even with me lying down in the back seat, we see all the colorful beach goers passing to and fro on the walkway in front of us. Unfortunately, the colorful folks stop directly in front of us and block our view of the upcoming display. We crane our necks and see what we can as the fiery orb takes a final bow and disappears beyond the dark blue waters in the distance.
After a few minutes of silence, I say to Williams, “I love how the sun makes the surrounding sky and clouds so brilliant and beautiful, even after it goes down and is no longer visible.”
I think about my daughter Brielle, whom I haven’t seen since I left NJ seven weeks ago, and my sister Diane, who passed away, way too young, in 2003.
“Some people are like that,” I say.
Friday, August 23
“Have you tried sitting up since you’ve been here?” asked Dr. S.
“No.” I shook my head, “I’ve been afraid to. The last time I tried, about 4 months ago, I was laid out completely for almost a month.” I responded.
“Do you want to try it now? It’s been what, almost 6 weeks since you’ve been here?”
“Well, I guess, but just a little at a time.”
Williams adjusted my reclining wheelchair from its current flat, 180 degree position, to a 45 degree angle. It felt strange but good to be this much closer to upright. I haven’t been able to sit upright for over a year.
Within a few minutes, I was feeling the familiar pressure in my head and lungs building. The same pressure as if I was being held upside down. Dr. S was talking but I wasn’t able to follow what was being said. It was like my hearing was going and things were quickly turning silent. I asked my aide Williams to put the blood pressure cup on my arm. I could see the readout on the table. I was disappointed but felt relief that at least I had proof of how I was feeling. I interrupted Dr. S and pointed to the readout.
“Hmmm, 170 over 100, that’s not what I was hoping for. It is quite strange, really. OK, you can lower his seatback again.”
I allowed myself to hope it was going to be different this time. No worries, though. It is early in the game and I still have plenty of faith.
In 10 minutes we retook my blood pressure and it was back to the usual 120 over 80. I was feeling much better and the heavy brain fog improved dramatically, although not completely.
We discussed my treatment plan for next week. After 6 weeks of detoxing, I was to start taking a parasite cleanser on Monday, but only under the supervision of a nurse. Evidently I could get very sick from it and they wanted to make sure they would be able to “reverse” any ill effects if necessary.
I left the safe house that is Dr. S’s office and headed directly for my 6:00 lymphatic drainage appointment.
Even before the massage began, lying on the table I felt a sharp pain on the left/center part of my chest. I mentioned it to Deborah, my masseuse, and she asked if I still wanted to move forward with the massage. I said yes.
The pain was getting worse now. It radiated from the center of my chest up through my jaw and to my head. Headache was getting unbearable. I made her stop.
“It can’t be acid reflux,” I managed to get the words out through the pain. “I just took a Prilosec a little over an hour ago… and I haven’t eaten anything.”
Deborah massaged my jaw and head but there was no improvement. I tried to sit up a little, thinking maybe it was gas or indigestion. Pain was severe now and getting worse.
“What do you want to do? Deborah asked, holding my hand.
I didn’t respond right away. I knew the symptoms of a heart attack and this matched the symptoms pretty well. I also knew that due to my blood clotting factors I was an extremely high risk of a heart attack or stroke. Since my illness began 2 ½ years ago, I have had my fill of hospitals. I hadn’t had to go to the hospital ER in almost 9 months and didn’t want to ruin that streak.
I waited a little while longer, but the pain kept getting more severe. Lord, I don’t know what is happening, but I will follow you wherever you take me.
“Call Dr. S’s office,” I said reluctantly.
A few minutes later an ambulance was on the way. Damn, another hospital.
In the ambulance the EMT asked, “Where is the pain?”
I told her.
“On a scale of 1 to 10, what level is your pain?”
She administered an EKG and gave me 4 baby aspirin.
“Do you feel any better?”
She pulled the EKG stickers off my chest. “Sorry about that. I know it hurts.”
“Make that a 10 out of 10,” I said. She laughed.
She administered a spray of nitroglycerin under my tongue.
After a few minutes, “Do you feel any better?”
She administered a second spray of nitroglycerin under my tongue.
After a few more minutes, “Do you feel any better?”
“Yes. The pain is much better. Down to a 3.”
“A 3? Very good!”
Hmm, pain went away with nitroglycerin sprays. That was not good for anyone rooting against a heart attack.
My cell phone rings.
“Hello, Michael? This is Dr. S. How are you feeling now?”
I told him my situation and he said he was glad I was on my way to the ER.
“I will give you my cell number. Have the doctor in the ER call me if necessary.”
We hung up and I saw there was a new voice mail message on my cell phone.
I listened to it. “Hello. This is Dr. S. I heard you are having severe chest pain. I am sorry. We shouldn’t have had you try to sit up. I thought we were helping you. I will try to call you again shortly.” I thought of Dr. S and suddenly the sadness overwhelmed me. I couldn’t wait to tell him it wasn’t his fault. I knew this chest pain had nothing to do with me sitting up. I didn’t care if I had a heart attack for myself, but what if he now considered me too a high a risk to treat? Oh God, please no. The thought of going home unhealed was unfathomable. Back to an isolated hospital bed in my bedroom. Dr. S was my last hope. Please don’t be a heart attack.
EMT asked, “How is your pain now? Any better?”
“Yes, definitely a little better.”
“On a scale of 1 to 10?”
“I’d say a 2.9.”
While in the ER, I had to text with my left hand since my right arm had the IV in the bendy part of my elbow. God I missed my daughter Brielle just then, but with my family so far away in NJ, I didn’t want to alarm them if it turned out to be nothing. The only person I notified was my new friend from Dr. S’ office, a patient from Montana. She wanted to come visit me immediately. She was pretty drugged up from her pain killers and it was getting late by now, so I told her no, she could visit me tomorrow if I was admitted.
I was admitted and taken up to my room. I was left out in the hallway on my stretcher while the transporter went to the nurse’s station.
The sound was blaring from my soon to be roommate’s television. My PTSD symptoms kicked in and I started to panic. If I were to have to put up with that noise I would either harm my roommate or myself. No, I couldn’t risk being reported in the police blotter. I would not allow myself to be admitted.
“Hello! Hello!” I tried to get someone’s attention.
The transporter came back and told me I would be given the last private room available. Oh Lord, thank you! Crisis averted. The relief I felt was palpable.
Monday, August 26
Minutes passed into hours passed into days. Monday morning and I’m still in the hospital. Third blood lab testing for a heart attack came back negative and the sonogram of my heart also came back negative. Thank you God! Dr. S would most likely still treat me. Woohoo! The hospital doctors didn’t want to release me from the hospital though because my D-dimer was still extremely high, meaning my risk of heart attack/stroke was too high. I told them I had an appointment with Dr. S at 10:30 AM and had to be released no later than 10:00 AM. It was a big week of new treatments for me. Finally starting to kill the Babesia. If I weren’t released I would check myself out. I was finally released at 1:00 and went straight to Dr. S’ office.
I met with Dr. S and Gary, my assigned nurse, for about an hour. Dr. S reviewed all my blood work again and asked me questions about my apparent “heart attack.”
“I think you may have something called Diffuse Esophageal Spasms.”
Later that night, I looked it up and read that Diffuse Esophageal Spasms mimic heart attacks and can be treated with nitroglycerin. Dang, this guy is unbelievable! All the times I’ve gone to the ER with symptoms of a heart attack and no one ever mentioned it as a possible diagnosis.
I go to bed Monday night exhausted but I say my prayers. God, thank you for letting it not be a heart attack. Thank you for allowing Dr. S to still treat me. Thank you for my friends from Montana and Mobile coming to visit me in the hospital. Thank you for all the people that have supported me throughout this illness and also those that have contributed donations to my website or forwarded the link to others or have prayed for me. Please help all people with Chronic Lyme disease have the strength and courage to continue fighting this awful disease and to regain their health. Please help me tolerate the parasite cleanse tomorrow. Lord, you are in the driver’s seat and I am just glad to be riding shot gun. Amen.