Lyme disease awareness | Sherry's A Labour of Love

My beloved grandmother whose love knew no boundaries and whose adventurous spirit kept us all on our toes.

Checking In

It’s been awhile since I check in. I have a very good reason. On January 1, my birthday, I received the most delightful wakeup call from my grandmother. She called to wish me a happy birthday and we had the most wonderful conversation. Later that afternoon, I received a call from a family member that my dear sweet 94 year old grandmother had been taken to the ER with a brain bleed. She was living in FL and myself living 5 states away, I could not get to her that day as all flights were done and so on January 2nd, I flew down to be with her. On January 5th she passed on to be with the Lord. I did not return home until the 12th, as there was a great deal to do, as you could imagine.

I do not think that I could have endured the trip, caring for her those 5 days, the hospital environment (with 2 cases of MRSA on the same floor just a few rooms away), the emotional stress of losing a dear loved one whom I was extremely close to, and then the planning a small memorial breakfast and caring for her home and all of her little treasures without having been on the Disulfiram. The fact I did not get sick or come home and completely collapse is due to two things: God’s providential care and shielding over me, and my LLMD who prescribed me this protocol using the Disulfiram. I am absolutely certain that God’s timing is ever so perfect.

On January 6th I was scheduled to begin my 1/2 of a 250 mg pill of the disulfiram daily, and I did not falter on that. I continued on with my treatment. On February 3rd I began the 3/4 of a 250 mg pill M-W-F while taking 1/2 T-Th-S-S. Thus I am on my second week of this regiment. I have noticed:

The pain in my right ankle is quite obviously much stronger. I have a difficult time walking around first thing in the morning and at the end of the day. In fact the pain at the end of a day is so excruciating that I cannot get comfortable and am unable to get the pain to subside. Going to bed is my only saving grace.
Ok, so TMI….The body odor smell that everyone talks about on the blogs is very real. I’ve hit that stage and it’s making me crazy. Two showers a day sometimes is not enough. It smells like metal. Especially when detoxing.
I was, I thought, done with my monthly cycle as it has been for the last two years only showing itself at 4-6 month intervals. Well, I had gone seven months and thought I was past it. Nope! One last hurrah? Not sure. I’m blaming the Disulfiram.
I’ve been able to tolerate eating some fish occasionally. I’m very happy about that.
I am tired and find myself taking more breaks from “life” just to rest. Yet, I am also more motivated to get things done. I’ve been cleaning like never before. I know, sounds crazy to feel both. I think that the energy I have to get things done and the motivation takes me just so far and then my body is saying “ok, break time”.

This Lyme journey has carried me through so many locations of emotions. I have felt near death, I have felt sadness and darkness along with loneliness and I have also felt overjoyed and praise filled. My thinking is every so clear nowadays and I am so grateful for the opportunity to be able to share with others this journey. I hope that one day, someone will be able to follow with hope after seeing that healing is possible.

My grandma used to wear my Lyme bracelet in recognition of Lyme disease. I was delighted to find it in her drawer after she passed. She was so happy that I was feeling better over the last few years. I’m glad that I was able to be there for her in the end of her sweet life and that she supported me with unconditional love throughout my journey of life. She is very missed and I am slowly working past my grief.

For many of us with Lyme disease, it’s so difficult for others to understand. One minute we are doing everything that seems “normal” and the next we are in crash mode. Our bodies just don’t operate with any consistency. As I watched Under Our Skin again last week, I was reminded of how so many of us outwardly look “normal” to others, yet inside we are writhing in pain, exhaustion, and discomfort. What is seen on the outside is quite different than what is going on inside. While the outside looks content and at peace, on the inside there is a battle. A battle of immunity vs. borreliosis. A battle that isn’t won by either, as long as there is treatment, yet a battle that drags on without end in sight, so it would seem. One side trying to overtake the other.

I remember watching the attached when I was early diagnosed and I wept. I wept thinking there was not an end in sight for me either and that I would be just as bad as Krista. Fortunately, at the end of the story, I found hope and was encouraged to look toward healing with a positive attitude. It reminded me that what I was experiencing was nothing in comparison. I looked at her age and thanked God that I had achieved 20+ years longer than she before crashing. Her story is quite extreme, with some additional co-infections that riddled her body for several years prior to them finding out the cause. It’s difficult to watch, yet it’s so real. Her story is similar to Julie’s, in my last post, in that their co-infections and symptoms mimic one another. If, you have the heart to watch, please do so with tissue and with the reminder that there is healing.

Lyme is nothing to mess around with, yet it is not something to be terrified of. With the rates rising of Lyme disease, everyone should be aware of what kind of symptoms can be observed from just a tiny little tick. The bacteria that can make a body deteriorate quickly may be small, yet they are definitely a large scale concern. I encourage everyone to please understand Lyme, it’s affects on the body, learn how to recognize the symptoms early. Before thousands of dollars are spent on trying to come up with a diagnosis.

Please remember also, when someone is diagnosed with Lyme, we don’t want to be defined by it, yet we want people to understand that every day is a balancing act. Every day is a new day. We cling to hope, even though we get frustrated, and we pray knowing that only God will get us through. With my own experience with Lyme, I have said that I hope I can help someone else someday. I hope that my own journey will be an example to someone else in a positive sense and that none of what I have experienced will be wasted. Just as Krista has endured and shared, she also has educated which is what I am trying to do as well with this blog. Thanks for taking the time to read and to watch.