My current perspective on being Diagnosed, and relief or regret.
An answer, a Diagnosis–ask me two years ago, or flip back on the blog. I was relieved: THEN
It was a relieving shock to finally have an answer after 46 years. It was one heck of a learning experience understanding and navigating the world of rare diseases. Honestly, it is still a learning experience. Eventually, it is rumored, that acceptance eventually occurs. Honestly, I thought I had accepted this Diagnosis.
If I can clearly admit acceptance, I really do not know, at the very moment.
I hate this Diagnosis. I hate how it’s affecting those I love. I hate the betrayals I witnessed. I hate not being able to identify with another soul on this planet. I hate how It affects and limits my daily life, my cognitive ability decreasing. Mostly, I hate that this Diagnosis (and years prior dx, being sick) hurting those I love. Sometimes, when we were younger, many kids knew what they want to be when they grew up. I knew, long ago, I wanted to be a mother. Pre and Post Diagnosis, I hate more than anything, the mother I had wanted to be, had been replaced with Mom-CVID.
Well, lets do the happy ? dance—-At least I finally had an answer, and treatment, right? Maybe, if I can live long enough to raise my youngest, watch her graduate, and be a witness to her lifetime achievements.
It is not that clear-cut, simplified, or easy. What this Diagnosis did was make my children martyrs. Specifically, my youngest who has been an eye witness since day one.
Having an undiagnosed and untreated mom; To diagnosed and moving medical equipment into our home as permanent fixtures. Her listening from another room, and cautiosly asking if my igg was approved, after months of listening to me fighting for it. Her witnessing the side effects. Making excuses to others as to why we can’t go to a birthday party, or public event, her running for sanitizer the minute someone sneezes. Her internalizing every single instance of a medical persons scrutiny. She can even read their body language. Not a person, that she can identify with. Living in constant fear, how long will she continue to have a mother. She has internalized EVERYTHING, because she does not want to “worry” me. My only prayer, above all, is that I can have the strength and knowledge, to be the mother that I need to be for her. Miracously undoing the damage that has been done because of this Diagnosis.
The situation is much more complex than mentioned here.
Another Learning Curve in the World ? of PI:
Add to this, the current situation that the PI community is in (review prior posts), new presidential elect, the next Four years, we may lose many PI patients. I tried to warn, advocate, present the facts. Any reasonable PI community would have respected the facts, instead I was shut out. In opposition, to what I may observe as, morally or ethically questionable, I continued to present facts, knowing full well who my audience was.
Irregardless of what the specific topic is, was, or will be. With the graçe of God, I have overcame, many larger and eminently personal struggles, which seemed stunningly paralyzingly at the moment. I try to learn from these life-challenges, be it physical, financial, social, familiar, medical, political or otherwise.
It is with great sadness, that I realize what will occur. I am not the Almighty. When the individuals responsible answer for their premeditated and purposeful decisions of human lives lost–whoever they call their Higher Power–that will be their Judgement Day.
The truthful adage, “Two drowning people can’t save each other. All they can do is drag each other down.” The current of the river, will elimate the bottom feeders.
I will continue to monitor legislation, organizations, biosimilar development, any developments that may or will affect the PI community. I encourage anyone, who has any ability, to understand the far reaching consequences–to do the same. I still feel it is our commununities best interest to stand united. I, as a PI patient, will not waiver on my stance. Contacting me via email or messaging is always available.
What is the point of being diagnosed with this rare, and incurable disease, if the only life sustaining treatment can be taken away at a moments notice?
Would I prefer to have never known, of a diagnosis and subsequent treatment available….and let my health take its course. Additionally, my child’s mental health would be intact. The elimination of the exposure to the diagnosis, and subsequent life changing circumstances…
Would I have preferred to Know the diagnosis, and life sustaining treatment, benefit from treatment for awhile. Until no longer made unavailable to me….and the deterioration of my family, that pursued?
Ultimately, the last chapter will end the same. It is the pages in-between, that make the difference.
Has my quality of life improved with igg? I can’t state publically, honestly, I know the answer.
Quite a quandary.
I firmly believe if God brings me to it, God will bring me through it. ??