This has been a hard year. I have known for a LONG time that I have had limitations, they didn't really get to me until they started getting to my family.
September is Awareness month for two of the most disabling conditions I suffer from, both Intracranial Hypertension (IH) and Chiari Malformation (ACM) have awareness month in September. Why they put themselves together many of us are wondering, possibly cause Many of the symptoms are very similar, we don't know. For whatever reason, they are both in September.
I know many people over the years have criticized me for not going up and praying for healing week after week, year after year, after all, I am a Christian who believes God can heal ANYONE of ANYTHING, IF
it's God's will. Needless to say, while I pray and hope one day they will find a workable cure or treatment for both of these debilitating diseases so we do not have to suffer, and others after me will not have to suffer. God has been using this disease in my life for over 21 years. I have seen his work, He has brought people IN my life, he has worked through my life, and he has definitely used EVERY surgery, hospitalization and doctors visit for his Glory. I do not feel as if it's a punishment, like I did at 12, 13, and 14 years old when it started. I remember feeling like Job. I remember grumbling and asking God "HOW MUCH MORE?"
A wonderful Mentor by way of my pastor's wife back then, gave me some wonderful words of wisdom, I held them through every trial from then on. Tena said to me, in a counseling session when I cried I wanted to know what I was doing wrong that God was punishing me, she said that it wasn't what I was doing wrong, but what I was doing right, in tears, and pain, I then stopped and asked what I was doing right because I still wanted to be out of pain and I would stop that then. She then explained that these tests were going to be part of my testimony for the rest of my life…I did not realize then, that they would last so long, or have such a profound impact on so many lives.
God has had a very detailed plan for EVERY life I have encountered, I do not know where or how they have all turned out, what I do know, is that I have never put an opportunity to share him through this to waste. Each new diagnosis I have had added, I have cried over. It was VERY hard to be put on a walker at 32, it was great to go to the cane, and devastating to go back to the walker.
I cried when my rehab doc said paralysis instead of radiculopathy, I freaked out a bit, It was hard to take. When they diagnosed me as borderline diabetic, I was almost ok with it, til this week when I learned there is no such thing as Borderline and its actually diabetes, pretty well controlled, but diabetes nonetheless. When I saw my new gynecologist for irregular bleeding, and an annual exam, pretty routine or so I thought, and she is sending me for ultrasounds and a mammogram and breast ultrasound cause she found a mass, I know God will use that too. Needless to say, I am a bit overwhelmed.
I have so many appointments my calendar looks like it has the chicken pox.
If you know someone with a rare disease or disability, take the time to let them know you care about them, and that you are concerned, don't act like they have the plague or treat them like they are a burden cause they are sick, they feel it enough from their own minds. We have enough on our plates emotionally, please remember to think about how you would feel if it was YOU who had that rare disease that only affected a few people.
Often when I go to the doctors office or hospital the nurses and sometimes even the doctors unless they are "my" doctors do not even know what the diseases I am talking about are. I was blessed the day I was diagnosed, a Physician Assistant had seen it in a text book in medical school and I fit the profile, I had already been symptomatic 9 years. The Chiari they found by a neurosurgeon who was a 2nd opinion. He saw it after my shunt had come OUT, but he saw it in the CT scan before. Basically who knows how long it had been there.
Both diseases are extremely rare, and most people do not know what they are. A support group led me to facebook and a Multitude of friends who know my daily struggles. But those who really know me, I know very few who really know who I am and what I go through. There are three people at church who ask me how I REALLY feel when I say I am fine. One knows why because she has been there with the rare diseases… The other, she just Understands, God has blessed me with a few people to confide in when I need to talk.
For more information on my illnesses feel free to ask, or peruse these links,