Grady says, “I’m feeling pretty RUFF today. Now I understand why they say Sick As A Dog…sigh.”
I’ve been feeling a little under the weather these past few days so I haven’t been posting. That is normal for those of us suffering with Chronic Lyme Disease. Our medication protocols change so often that we are in a constant state of flux with our bodies. Imagine how you feel when you are started on simply one new drug by your doctor. Maybe your blood pressure has been a little bit high so he starts you on that blood pressure medicine you have been avoiding for years. Suddenly, you are feeling dizzy whenever you stand up too quickly, your head hurts and the medicine is making you a little bit nauseous. Now take into consideration that we are changing up to five medications at a time, sometimes on a weekly basis. It doesn’t feel good.
We have to constantly change our medications because the Lyme bugs are sneaky little bastards. They have figured out that we are coming for them so they run for cover. We have to keep bombarding them with different types of medications that do all types of different actions to try and kill them. The bugs constantly change their shape from ribbons to round cysts to a form that has no cell wall that hides in a slimy sludge called a biofilm. It is a tricky battle of cat and mouse.
On top of that, we feel lousy simply because we are SICK. This disease just makes us feel like crap (pardon the expression). It attacks our muscles, joints, nerves, heart, brain and gastrointestinal tract. We feel like we constantly have the flu, a migraine, arthritis, Alzheimer’s, palpitations, Bell’s Palsy and we can’t feel our feet. Our stomachs never seem to work right and we cannot regulate our body temperatures. One minute we are sweating with fever and the next we are shaking with chills. There is a war raging in our bodies constantly and we are feeling the effects of that battle every minute of the day.
The only time we are ever at peace is when we are asleep. The problem is…we can’t sleep! We have the worst case of insomnia you have ever seen. The Lyme likes to attack our central nervous system screwing up our biological clocks not allowing us to get that peaceful, restorative rest that we crave. It makes us insane. Have you ever gone days upon days, weeks upon weeks without sleep? You simply cannot function. You are walking into walls, pouring salt into your coffee instead of sugar, leaving for work with your slippers on your feet and you don’t even know your own name. Now try to manage the timed schedule of 50 pills that you are supposed to put in your mouth that day. Good luck with that.
The worst part of this disease is the PAIN. We are in the most extreme pain that a person will ever experience in their lifetime. Now, I am not taking it away from all the ladies out there who have suffered through three days of intense labor without the benefit of an epidural. I tip my hat to you but at the end of your three days of hell, it is over. You are blessed with your beautiful reward and the agony of your guts being ripped out fades away to your distant memory until you decide to have your next child. For us, the pain never ends. It is there, every minute of every hour of every day.
Keep in mind, I am no woosie here. I have had a kidney stone with hydronephrosis (a big, fat, swollen kidney), I have had meningitis twice and five spinal taps, I have had seven surgeries including having my shoulder rebuilt three times… I KNOW PAIN. Let me be the first person to tell you that the pain I have endured due to Chronic Lyme Disease is some of the worst pain that I have ever experienced. I have begged God for mercy while rolling back and forth on my bed. I have cried in agony as the cramps in my legs made it too difficult to stand. I have tried every remedy in existence to make it stop, from topical creams to heating pads to ice packs to massage therapy to Epsom salt baths to herbal remedies to medications ~ both over the counter and prescription. When you are suffering to that extent, you will try ANYTHING to make it stop. It has taken an intestinal fortitude that I never knew I possessed in order to survive the degree of suffering this disease has thrust upon me.
Some people with Chronic Lyme Disease simply cannot tolerate the years of suffering and they choose to commit suicide. I can understand why they do it because the pain is relentless. I truly believe that anyone can tolerate an enormous amount of physical pain as long as it is fleeting but if you ask someone to endure that amount of pain for years on end, it is an entirely different story. I do not judge those who have decided to take their own lives because everyone has a breaking point. Although I have been pushed to the brink, my mind is made up that I will not take my own life. I simply can’t do that to my mother. No matter how much pain I must endure, I will never hurt her by intentionally leaving this earth before her. I know that it would crush her to the core. I also knew that when I started treating this disease that I would suffer immensely. Everyone told me that it would take years of treatment, that I would get sicker before I got better, that it would be an awful experience and I took them at their word. I have seen enough suffering during my career in medicine to know how much pain people can endure. I was ready.
This disease has lived up to everything I feared and it has surpassed how I thought it would affect my life. It has tested my willpower, pushed my limits of pain endurance, forced me to abandon my career, stressed my body to the edge of death, strengthened my bond of love with my mother, broken my bonds with others, stripped me of financial securities, heightened my knowledge of clinical medicine and reinforced my faith. Surprisingly, I am not angry that I got this sick in my young life. I am grateful.
I am grateful for the lessons that I have learned about myself and others, grateful for the strength it has given me deep in my soul and grateful for the knowledge that I will come out of this a better person than who I was when I went into it. Now, if only I can survive it, that will be my biggest blessing so I can carry on with making a difference on this new path that my life has taken.