Maybe some might think this is a little personal to share, but I am going to err on the side of sharing it in the hope that it might bring encouragement to someone else out there who is dealing with the unknowns of medical health issues. It’s my reality of “where I am” (yes, and a pun intended on the words with the new album title) and with an upcoming tour, something I have to deal with diligently.
10 years ago, when I was 36 I had my first TIA (Transient Ischemic Attack). It caused blindness, like a vertical shade going across my right eye for about 10 seconds and then I experienced some droopiness on the left-side of my face and then left-sided weakness in my arm down to my hand the next day. My doctor put me on warfarin, an anti-coagulant, right away. We searched and found the answer to it via a TEE (Trans Esophageal Echocardiogram): a finger like blood clot attached along the inside wall of the left atrial appendage of my heart happily fluttering back and forth. Culprit.
About a year later my body finally broke down the clot and I had another episode. This time a small stroke. Again left-sided weakness. Apparently what was left of the clot dislodged. A follow-up TEE showed it was gone. After that first TIA my doctor sent me to specialists and we ruled out many things. The Hematologist could not figure out why I was clotting. All the tests he ran were negative. He said since there was no reason why I should be clotting, I could come off the warfarin. I didn’t feel comfortable with that and did not want to experience the effects of another stroke. So I stayed on the warfarin, and I am glad I did, in hindsight.
Fast forward through 10 years of all the hassles of bleeding, blood coagulation testing, and beautiful bruises…
I had just returned from my last trip to Nashville the beginning of May. I woke up one morning and had what seemed like another episode of a TIA. It didn’t quite feel the same, as I had swelling, redness and numbness on the left side of my face, but then I had the left-sided weakness and numbness in my arm and hand with some tingling in my fingers. That part was similar. I monitored the symptoms all day and when they weren’t resolving, I decided to go to the clinic, but they immediately sent me to the ER due to my stroke history.
I was mad. I didn’t want to go to the ER and make a big deal about this. More blood tests, an MRI and a CT scan with contrast revealed a left Cerebral Venous Sinus thrombosis in the back of my head, but the blood was still managing to flow through the clot. My INR had gotten low while I was traveling and had probably been non-therapeutic for two weeks. Maybe enough time to form and throw a clot, but it didn’t make sense because it would be traveling the other direction in my system. They also noted stenosis in a vertebral artery. Most likely unrelated? How could I still be clotting after 10 years of being on an anti-coagulant. I confess, I am scared.
A lot of other health signs and symptoms I have had over the past decade have made me wonder if it isn’t something more, or different, causing the clots. I have dealt with shingles, joint pain, fatigue, alopecea areata, asthma, allergies, swelling in my face and hands, Rosacia and strokes with this blood clotting issue. I personally think it’s something systemic with my auto-immune system. But I’m not a doctor. And they don’t seem to like it when I look up my symptoms and play doctor. But hey, I am an intelligent woman and a counselor. I love research and getting down to the bottom of things. I am also a “need to know” kind of person. If I know what I am dealing with, I can some how “control” it and figure out how to manage it better. Ha! God has reminded me, I am human and He is God.
But here’s the thing: as I go through all the questions “why” again, after so many years on the warfarin and start to see the specialists again: neurologist, hematologist, etc., I find myself being obsessed with chasing down the answers. I don’t have the answers. I want the answers. I am tired of dealing with this “unknown” in my life. I have music to share and my stories. I have been dealing with the unknowns fairly well with my music ministry and enjoying the great adventure of the unknown of where God is taking me with it, but it is very hard for me to consider this unknown, when my physical body and health are under attack. To call it a great adventure? I don’t know, maybe in time I will? Certainly, I am assured of where my adventure ends and that will be a glorious day. But until then? Quite possibly, this is another story I take with me to my concerts.
I’ve had to adjust my life to a chronic blood clotting disorder, most the time taking it for granted, because I’ve had it for so long and have just adapted to the daily routine. But now, once again I am very much aware of how vulnerable I am, and how fragile life is. I can get blood clots even while on my anti-coagulant. That is NOT a comforting thought to me. I am going to have to make more adjustments in my life that will be “inconvenient”.
I’ve always known that at any point God could require my life. Every breath I take has always been a gift from Him while on this earth. I’ve known this ever since I born pre-mature at 29 weeks gestation. I stopped breathing and was down to 2 lbs 12 oz and turning blue. My doctor resuscitated me and I know it was the breath of God that he breathed back into me. I am here for His purpose and His pleasure. So I know that at any moment, He could take that breath away. Or, I could live with a paralysis or be incapacitated somewhere in my body, stroke-related, and be unable to do the things I enjoy doing right now: singing, speaking, playing piano, hugging, walking, driving, feeding myself, putting clothes on, thinking clearly…the list could be unending. I think too much.
Testing continues. Next, rare blood tests, CT scan with contrast of my body from chest to pelvis. Looking for clots or something else. “Don’t freak that you are seeing a Hematologist that also carries the title of Oncologist”. Still chasing the answers. But today’s answer is “not yet”. I think, today, I will reflect on His goodness instead. Because it’s the one thing I do have control over, and putting one step in front of the other. I need Him, every hour, every day.
“Cast your burden on the Lord,
and he will sustain you;
he will never permit
the righteous to be moved.” Psalm 55:22, ESV
So I think I will call this blog “Part I” and make it an ongoing series until I have the answers (or am content to leave things unanswered). Anyone relate or care to join me in this journey?
I wrote a song on my new album I just released that applies to this so well. I wrote it in regards to following the path of “unknowns” as a believer. Maybe this will resonate in your heart as it does in mine.
May God bless you, be with you, and comfort you in your “in-betweens”.
“You will meet me in the in-between
Where I’m not sure of many things
But your love and your grace
And how they carry me to this place.
You will meet me in the in-between
Where yesterday and tomorrow meet
Oh speak to me, speak to me, You speak to me
In the in-between.”
Continue on to Chasing Answers – Part II…