I am in a room with family. My dog cuddled up to me. But yet… I feel nothing right now, other than the over whelming thought of flight. The thought of running. I haven’t felt this way since I was a child. Huge abandonment issues, never truly feeling wanted or loved. All of those feelings are starting to creep back to the surface I thought I had buried them so deep they could NeVeR be found.
What would happen if I got in my car and left? How long could I get a hotel? How far could I get… How long would it take for them to notice? Would they notice?
I hope that I come out of this soon… There is nothing like feeling empty and alone.
For every tear I shed for you I die a little more inside…
My appointment is set for march 13th with a specialist at UW. She is in the headache clinic and right now is working with people with Arnold Chiari! Feel blessed to get in with her but scared at the same time. For anyone that deals with a brain disorder or daily pain, waiting months can seem forever. My neurologist has upped my topamax to 200mg daily added muscle relaxers to my pain meds, sleeping meds, nausea meds, maxalt.
I start my third round of Botox in a few weeks. Haven’t really noticed much from the first two rounds but was told by my neurologist to not expect much until the 4th round of treatment. Crossing fingers that something works.. I’ve had a few surgeries, medical procedures, and lots of meds but so far nothing has clicked for my daily headache, multiple migraines a week. So much pressure..
It will be interesting to see what happens over the next few months for me. How I will keep this pain to my self and live my life, raise my children, be a good wife, run a business, oh.. Keep a clean house and cant forget about the most important things. Cooking meals and LAUNDRY!! Try to smile while doing it because no one wants to see me in pain, sad, or angry. The mask must go on for a few more months.
I would love to hear how other people do it. Even if you don’t have Adult Onset Arnold Chiari, or a brain disorder at all. If life is just rough. How do you make it through some days?
In the spirit of sharing.. Something I have never opened up about. The loss of my father
The first week of February I went out to dinner with my step mom (Diane) my and and my two kids. The food was good the company was even better. Who knew that would be the last meal I would have with my dad, the last time I heard him say “I love you.” The next morning I get a call from Diane that my dad collapsed at work and was being rushed to the hospital.
I jumped in my car, called my siblings, get to the hospital and we wait. I see the ambulance pull in. I ran outside and I see them pulling my dad out of the ambulance on a stretcher, not breathing on his own. We go back in and we wait. Scared and unsure what was going on.
We go in to see him, it smells of death everywhere. He is in a medical induced coma. They are running tests to see if he is even still inside , alive. He has tubes down his throat for him to breath. His stomach pumping up and down with each breath forced into his lungs. I remember sitting there with my sister telling him “Daddy, your girls are here for you, we love you so much! Please wake up and come back o us.”
It was so emotional with each person talking to him, with every look at him, with every thought of loosing him.
We waited almost a week. Waited while they ran tests. While we prayed, stayed by his bed side. The smell of death in the air. We waited. We couldn’t leave him. Until the choice had to be made. We had to make the choice, and we made it.
Everyone said what they needed to say, we prayed, we gathered together and all at once the machine went off. The pumping stopped… The beeping stopped… He took one last deep breath and then stopped. I fell to the ground in disbelief …
My Daddy was dead