“Blessed
is the one who perseveres under trial because, having stood the test,
that person will receive the crown of life that the Lord has promised
to those who love him.” James 1:12
Over
the past month, the book of James has been working in me. It's made
me look at myself and ask questions that I haven't asked before. It's
made me examine myself and wonder who I am and who I have become.
Does
my head injury define me? Have I become that person who can't seem to
talk about anything else? Why am I so concerned with how people view
me? Why do I have to make sure they understand exactly what I'm going
through all the time?
I
have many reasons to be happy. Over the last 3+ years, God has
blessed me in huge ways over and over again. I have come to a place
of self-love and self-confidence. My husband and I have never been
closer. My children are growing strong and independent. We have
beaten almost all of the debt we got ourselves into and are closer to
financial freedom than I could ever have imagined. We are on a solid
and steady plan to finish remodeling our house.
There
are so many stories of God's rich blessings over these years since
the head injury. So many specific instances of His intervention and
perfect timing that there is no denying His work.
So,
why do I worry when I have a smile on my face? Why am I nervous to be
happy? I don't want people to think I'm pretending, lying, or that
I'm all better.
My
physical challenges are invisible to most people. Some who know me
really well can tell when I'm feeling worse than usual, but my
headaches and fatigue aren't displayed for all to see.
Everyone
has trials in their lives whether they are big or little, temporary
or permanent. My trial shouldn't be any different than anyone else.
It shouldn't define my life. When people look at me, I don't want
them to see my pain, I want them to see God's light.
James
is brash and bold and can make you uncomfortable, but his book is the
truth. I have to remember that the testing of my faith brings
perseverance. I have to let it finish so that I will be complete, not
lacking in anything. I must ask God for wisdom in all things and then
believe and not doubt. I must take pride in my position and stand the
test so that I may receive the crown of life.
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This is me as a little girl. Hopefully I can be
as strong now as I thought I was then!
Hi Kate,
ReplyDeleteGlad to read you are doing well. Are you still taking Deplin for MTHFR and how is it going....any side effects ? I have tested positive for both mutations and would like to find a doctor in the Buffalo area that has experience with this. Any suggestions ? Thanks. Linda
Hi Linda,
ReplyDeleteI'm not taking Deplin anymore. I noticed that after taking it for a while, it wasn't helping any of my symptoms. Now that I've been off it for a few months, I know it didn't make any difference. There are substitutes for Deplin online that are less expensive and don't have as many additives to them (plain L-Methylfolate).
Maria Rizzo, PA at Dent Neurology seemed to have a good deal of knowledge about the mutations. I haven't seen anyone else who seemed to know a lot about it.
Good luck!
Kate
thank you so much Kate, I have been searching for anyone that knows anything about this and have had no luck at all. I am going to make an appt to see her. I appreciate the reply back and hope you are doing even better than before. Have a great day.
DeleteLinda
Good luck Linda! Please let me know how it goes.
DeleteThanks! I'm working on my rehab and increasing my endurance. It's slow going, but I'm excited to be working toward hope!
-Kate
Dear Kate,
ReplyDeleteAfter reading through your posts, I was wondering if you have ever been tested for POTS (postural orthostatic tachycardia syndrome) or other dysautonomia. Studies have linked POTS with TBI. After struggling with PCS symptoms for 9 months our son was greatly helped when he was definitively diagnosed with POTS. Thanks for the very helpful information you post and for your example of seeking Christ.
MichaelT
Hi Michael,
DeleteI had never heard of POTS before, so I had to do a little research. I had many different heart studies, though, and there were never any issues with my heart. Dr. Leddy from UB's research involves blood flow to the brain. He said that most PCS patients have a disconnect between their brain and their heart. The heart sends too much blood to the brain for activity and it gets flooded.
I'm so glad that your son's diagnosis was helpful for you guys! What do they do to treat it and how is your son doing now?
Thanks for the info!
Kate
Hello, Kate.
DeleteThere's no known cure for POTS, but for some the symptoms can be lessened. Many who have POTS in teen years find it goes away in their mid-20's. The test for POTS involves a tilt-table test and electrodes. Though the condition is not rare, the knowledge in the medical community about this relatively newly-discovered condition is not widespread and there are only 50-100 labs established that can do the test. The frontline research centers seem to be Mayo, Cleveland, and Vanderbilt. We spent months focusing on TBI and PCS and even had a PCS diagnosis, but a chain of neurology appointments providentially lead us to POTS testing and a definitive POTS diagnosis. In God's mercy, one of the neurologists stepped back, looked at the big picture and started investigating other possibilities. The only thing that didn't fit with mTBI or PCS for our son was the 6 month delay between his MVA and the onset of strong mTBI/PCS symptoms.
He's not doing well now, but having a definitive diagnosis has greatly helped his mindset as he struggles through the symptoms. If your reading on POTS in any way seems like a POTS could be an additional condition for you, I would highly encourage you to get tested by a neurologist with POTS expertise. POTS onset has been linked in research to trauma (e.g. auto accidents) and PCS/TBI. Searches for "dysautonomia" as well as "postural orthostatic tachycardia syndrome" will turn up most of the major links.
By the way, when we were researching our son's condition after his MVA, we spent months researching TBI. It wasn't until later that searching on PCS uncovered tons of additional helpful articles. Is the use of mTBI vs. PCS a regional difference? Is one term more standard?
Thanks.
MichaelT
Here's a study linking POTS with PCS/TBI:
Deletehttp://www.dynakids.org/Documents/POTSfollowingTBI.pdf
MichaelT
I see this is an older post, but had the write. I used to see Maria in Dr Kang's office. Are you in the Buffalo area still? I have had PCS symptoms for over 10 years now. Haven't found the right combo of medical care here. Dxd 1996 w CFS and since then a plethora of " conditions".. the brain injury just compounded everything.
ReplyDelete