Many of you have been asking Why Lyme Disease? Why is this a possibility?
Given my level of neurological symptoms, as well as my not-so-great response so far to treatments, my POTS doctor and I are looking further into both Lyme and Cervical Stenosis.
On the path to deciding whether or not to pursue the possibility of a Lyme diagnosis, I found myself amazed at all of the "God moments" I was having...and wanted to share those with you. If "God talk" bothers you or makes you uncomfortable, I completely understand...so just skip this post on the blog!
As my 30th birthday neared, I found myself despairing about what my life would be. It made me think about HOW sick I have been this past year, how I've gotten worse, not better. I began to wonder more: Would I ever feel better? Was this my life? Would I ever be able to live independently? What about marriage? Children? And everything seemed impossible.
I swore I would never get 'down' about turning 30. But I did. I never imagined that I would enter another decade of my life sick. I had somewhat accepted 'losing my 20's', but I couldn't imagine starting off another decade so sick.
I was also feeling like we were running out of options and strategies for getting me back on track (although, I know in my mind I dramatized this b/c my POTS doc never gives up on me, and never stops pulling tricks out of his hat!). I have tried several new medicines and so far, we haven't had much success. In PT, we have been unable to make progress. So, I felt 'stuck'.
What I wanted most was for God to show me some new hope before I turned 30. Some new hope that just maybe, just maybe my 30's could be my years to improve and have more healing.
I took my despair and really dialogued with my PCP and my POTS doc (as you know from the earlier post). I cried to my PCP! He is such an angel!
As I questioned whether or not to pursue the possiblity of Lyme, I had one "God moment" after another. Here they are...and here is why I feel so incredibly called to pursue the possibility of Lyme. Whether I have it or not, I must pursue this.
- First, about a year ago I began corresponding with a woman on my support group who herself had Lyme disease. She had a daughter my age with POTS. We began corresponding, growing closer and closer, sharing stories, and favorite books on tape. We would often email each other and without knowing, be listening to the EXACT same book on tape at the EXACT same time. I felt so drawn to her, but we rarely talked about Lyme.
- In the spring, my POTS doc raised the remote possibility of Lyme, just to rule it out. I knew nothing about Lyme. But, immediately I KNEW that God had brought this woman in my life for even more reasons! I knew one person in the world with Lyme, and it was her.
- My friend and I began to correspond in great detail about her experiences with Lyme and as an advocate for Lyme. She is AMAZINGLY informed and passionate about Lyme, and I have so many emails from her about Lyme. As she told me her story, we often had very similar experiences--especially not being able to sleep!
- My mom went to dinner with some friends shortly after the suggestion of Lyme disease, and the wife said, "I have always wondered if Emily had Lyme disease!" We had never thought of it before!
- Recently, I posted on my website about how down I was feeling. Another woman, who has both POTS and Lyme emailed me personally to say how much I reminded her of herself and her Lyme experiences. She said that she did not want to push me on the Lyme issue, but offered both her expertise and friendship. We began corresponding in great detail about Lyme and her experiences and I felt so similar to her. She offered to do ANYTHING to help me find a Lyme Literate MD (a VERY difficult thing to do and decide about). Between her and the other woman from my site, I felt so incredibly blessed--although we have never met, these two women did so much to help me with this process. I literally could not have done it without them. And I continue to be amazed by their kindness and support. I felt God through them.
- Just after I began emailing more about Lyme with these women, I saw my PCP and asked him for his thoughts on pursuing the Lyme diagnosis. He was open to it. And then said, "I just had a man in here today who has been sick for four years and they just found out he had Lyme disease."
- When I arrived home from the doctor that day, I found a letter in the mailbox from a dear college friend. After dinner, I read the letter only to find my friend mention that her Dad had recently had a major health scare due to an allergic reaction to antibiotic treatment: He had been diagnosed with Lyme disease! I felt like God was hitting me over the head with Lyme disease! I hadn't heard of it hardly at all...and then all in the course of a few days, I was hearing about it in what seemed like everywhere!
- My PCP appt. was on a Thursday. On Friday, Mom took Asher to the vet for an appt. The vet asked what was going on with me health-wise. At first, my Mom did not mention the Lyme disease stuff, but then thought, 'Oh, I should ask b/c he sees this in animals too, and might know something.' She told him and he said that both his son and his lady friend had Lyme disease! His son had been very sick and was now in medical school. He even had an LLMD for us to possibly see. I ended up scheduling an appt. with the doctor, but ultimately choosing a different doctor.
- Friday evening, I called my friend/adopted Grandma. She asked how my doctor appt. had been the previous day and what we had decided to do. I said, "Well, we are going to look into Lyme disease and..." She interrupted and said, 'You're kidding? I just said to my husband the other day, 'I wonder if Emily has ever been tested for Lyme disease?'" She wanted to suggest it to me, but her husband didn't want her to 'interfere'. She began to tell me the story the daughter (who I know from high school) of their close friends who was diagnosed for many years with bi-polar disorder. Then, a local doc decided to check her for Lyme disease just a short time ago. She came back positive for Lyme, and since beginning treatment has had a great deal of improvment. Her psychiatric problems were CAUSED by the Lyme disease!
- During this time, more and more people on my support group were also popping up with Lyme and POTS, and yet another woman emailed me about having Lyme and POTS.
These are what I call "God moments."
I felt that Lyme was popping up everywhere! I felt that I must pursue it as a possibility. I felt that for the first time in a long time there was new hope and new possibility.
Whether I have Lyme or not...it doesn't really matter. I just need to pursue the possibility.
Right now my quality of life is so poor, I do not want to live my life this way...so I must leave no stone unturned!
Before the Lyme 'stuff' began, I ordered a painting of a butterfly from another woman on my support group. She painted me another one--and titled it 'Butterfly of Hope.' At this point, I wasn't feeling very hopeful, but I made an intentional effort to turn around my thinking and made the butterfly my new 'symbol' for my 30th birthday. I also asked for a print of a favorite Emily Dickinson quote about hope for my birthday (which our neighbor is making for me!).
I feel that God has guided me on this path every step of the way...and that I was given the gift I soooo wanted for my 30th birthday. New hope, new possibilites.
Regardless of what we find--Lyme, cervical stenosis--the path will not be easy--but it is an answer and it does give us more of a direction to travel in terms of treatment.
So, for those of you who have been asking me about my "God moments"--here they are!
Now, I'm just hoping we are going to figure out how to GET me to this appt! That will be the next challenge!
Love and Blessings,
Emily
