Let me begin my Journaling Journey by providing you with an update of what my sweet daughter’s medical journey has been like.
When my daughter was 13 she began complaining frequently about having headaches. I dismissed them initially by simply telling her to take some Tylenol if it hurt bad enough for medicine.
Then by the time she was 14, she started complaining about them becoming more intense. This was when my alarm bells began to ring that this has become a bigger problem, but it was just her head. What does anyone do for a headache but to treat it at home and do your best to beat it?
As time wore on, I also began to see her spring and fall allergies become more than just seasonal. She seemed to need allergy medicine more often than just the occasional times. Why? At that time it was anyone’s guess.
Fast forward to 16 years old, now she has headaches multiple times a week and has migraines multiple times a month. Why? It is still anyone’s guess.
I saw her struggling, but did not know why. At this point, she began getting more and more strep throats and sinus infections. So many more that her primary care doctor suggested I take her to an ENT (Ear Nose and Throat Specialist) which I did.
He agreed she had a problem but needed to run some tests to determine what might be causing this issue. He removed her adenoids hoping this was the problem and her infections would clear up. He also suggested doing an allergy test to determine what she was actually allergic to so we could narrow down how to properly address her allergy symptoms. The results of this were crazy. She came back allergic to just about everything you could be allergic to environmentally. Why? We do not know.
Shortly after doing the allergy testing she started doing weekly allergy shots, which only continued to make her sicker, but we were told it would only get better and to continue doing them because it was in her best interest.
After almost a year, she only got worse, her sinus infections were not only significant but they never went away. At this point, we were sent to expert ENT with this hopes of figuring out what was going on. This led to the completion of allergy shots and led us to a less than satisfactory doctor experience. I ended up removing her from his care, which for her was not soon enough.
Unfortunately, she did need another ENT and with the quickness because she became a “frequent flyer” to our local Urgent Care and they thankfully referred us to who she still sees today.
This doctor has been amazing. He sent us to her Allergist she is presently seeing, who through determination, stumbled on her Immune Deficiency which she was born with. It finally shed light on why she could not get rid of her strep throats and sinus infections and why when she was a baby she had five cases of pneumonia. It all made sense, but what do we do with this information? This we are still working on. This diagnosis, for some reason, had begun to get worse, and now they would like for her to take Immune Replacement Therapy in order to build up her immune system which is fighting against her. This journey will be difficult as we have already been told, the insurance company will most likely refuse this treatment because it is too expensive. This is a fight both the allergist and we are prepared to fight. I am sure I will be writing about this experience as we begin this journey, as I am prepared for it to be a rocky one at best.
So jump ahead to where we are presently and this is with my child fighting her own body, day in and day out. She battles herself with relentless and chronic migraines, an immune system that does not retain the virus’ information it comes in contact with, and her constant sinus infections as a result.
Why does she have to go through this, I do not know. I wish I did.
So the long and short of all of this is… does she have a serious disease such as cancer or something else equally dangerous, no? This I am thankful for, but yet I sit here having watched her struggle for four long hard years now and we still do not really have any concrete answers as to why or where this came from, minus her Immune Deficiency.
We do not know why her body fights against itself with these debilitating migraines. We do not know why they are resistant to treatment methods (and yes, we are at the top there too. She sees a top of a line Migraine Specialist) who has taken her to just about every method of treatment there is. She does Botox every twelve weeks, she just started this new migraine medicine called Aimoveg, and just yesterday had a second round of Nerve Blockers (but he was more aggressive with them as this migraine is just relentless). If this does not work then she could be in the hospital as early as next week to fight this migraine with medicine that can only be administered via a hospital environment.
So in closing, this is what my sweet daughter has fought through for the past four years, she has fought and continues to fight to gain her life back. There have been way too many difficult days she has endured. She has had several surgeries since this started, all of which she needed, and she still battles her body every day.
As a mom, it tears my heart into tiny little pieces and there is nothing I can physically do to make any of this better. The only thing I know to do is to stand by her side at every appointment and stay up with her at night when she is sick and in massive pain, and just keep praying over her mind, body, and spirit every day.
Now I have given you a summary of where this journey for her began, now it should make better sense as I journal my way through the days, weeks, months, and years ahead. There will be days of frustration, sadness, joyous occasions to celebrate, (I hope), and times of what we call dark humor (which we have come to use as a survival technique to find our way through the many dark days we experience).
I am unaware of how many times a day I could journal about this or if I will write every day, but to know I have an outlet to come to is an encouragement to me. I am looking forward to just having an outlet to put my thoughts, questions, and fears without feeling like I am burdening my friends again and again.
It is my prayer and desire that this journey we are on might bring encouragement to other families who struggle with their own problems, that they know the struggles are real and you do not have to be alone. We are here to walk along beside you.
Now my Journaling Journey will begin.
Next stop, allergy shots again tomorrow and we continue to wait and see what the nerve block will do for this stubborn migraine cycle.