In full disclosure: I realize this post is very personal and can be considered unprofessional. I apologize to those who expect higher of me, but one of the greatest business learning experiences happened while I was sick and bed ridden. My sickness could be considered a blessing. Those of you who have known my story from the get go and have been asking deserve an answer and a conclusion to my story. For those who are not familiar with my story and have recently casted judgment on me, I am hurt. I am not hurt because you have become unfriendly but because you are too busy judging me and trying to change the inevitable that you have not taken the time to learn about what really hurts me, what is making me sick, and what IS my life. You have not taken the time to love me and be supportive. Overall, you have not taken a moment to care. I am writing this post for two reasons. The first reason is to let those who have wondered where I have been for the last 3 1/2 weeks virtually…thanks for your concern. I am fine and have been experiencing life (yeah). The second reason is because life in itself can be hard and when people (IRL) do not understand it makes it harder. Hopefully, this will be my last post about my sickness. It will briefly show you where I have come from and where things will probably be for the rest of my life…and I think I am ok with that.

This post has been coming for a long time. In fact, it is 1:20 am and I am sitting here typing barely asleep…I mean awake (somewhere probably in between?). I can’t get some zzzz’s; things are on my mind…which you have to admit is kind of funny since my brain injury is the reason for all of this (more on that below). I am not sure what I am going to say in this post (which probably leaves me in a dangerous position of being overly transparent and brutally honest…umm yikes). Nevertheless, people are left clueless, not knowing what to think about my sickness. So, I am sure that this post was/is a long time coming. At this moment, I am not even sure what to call this post.  Any ideas???? I am sure I will come up with something fitting.

So what ever happened to me? Did I have a remarkable recovery? Did they find out what is wrong with me? You, probably along with my MANY family members have been asking these questions WITH me. Life is hard and sometimes you get dealt a really bad-bad-bad hand from the deck of cards. I was. I still am (this is why I don’t gamble). Let me explain.

I have not recovered. Some days it is a struggle to get out of bed in the morning. We, (I guess I should say “I”,) have many theories on this. The first is because when I finally fall asleep my blood pressure drops. This comes with autonomic dysnomia, a confirmed diagnosis from accredited hospitals.

(Evidently, even accredited hospitals don’t mean much to skeptics – The skeptics, critics – a.k.a.- friends/family members who have been so brutally mean and overall have probably been the worst pill I have had to swallow through this whole thing. I am being honest and hoping if you read this post and something like this comes, bring a warm cup of tea…not a jagged little pill).

I will count my blessings though. I am better. I have learned that my blood pressure works better in hot weather because theoretically my blood vessels constrict and cause less blood to drain from my head. You will probably see me at the beach with jeans on. Don’t be worried. I am still me and NO, I am not hot, because evidently, I have lost my ability to sweat. This is unconfirmed by a doctor but confirmed by my husband and me (even our opinions don’t mean much to the skeptics). I still suffer from a paralyzed stomach and consume juice, not vegetable juice (I should but I don’t…so much work and hard to swallow). I have been drinking super fruit juice like Acai and Resveratrol. They do help me (a personal opinion unconfirmed by a man in a lab coat, but confirmed by the person who has the paralyzed stomach in her body…but “what does she know“).

I do have P.O.T.S. (If you want to know more about it, here is a video about P.O.T.s). I do suffer many days but have learned to tough it out. NOTHING WAS AS BAD as the days I sat behind a computer unable to listen to my children laughing, unable to drive, unable to listen to my son learn to play the piano. I am thankful that the computer was my only escape. It kept me learning…a skill that later would benefit many businesses and my family (financially). When I was on the medicine that the doctor prescribed to me to raise my blood pressure, I was deteriorating; I WAS NOT GETTING BETTER. I was dying. I will stand by that statement ‘til the day I do die and I am thankful that the day has been prolonged The medicine that was prescribed in a low dose was slowly raised to a lethal (over the recommended amount) and was slowly killing me. Getting off of it was the smartest, scariest, and bravest move I have ever had to make. I had to do it alone. I had no choice. I had to take a stand for me…I barely could stand at that moment in my life but I did. I do not regret it. I embrace it. I am proud of taking a step away and making my life better for not just me but those who depend on me.

Have I made a remarkable recovery? I am healing and I am remarkable (hehehe). However, I have not made a “remarkable recovery” and a miracle has not occurred. I have battled some very deep, deep demons and I will never forget what that was like.

• It has made me learn how to stand up for myself and for what I believe in.
• It has made me realize that each day is a gift.
• It has taught me how to credit myself with surviving.

I had to take my health into my own hands…away from my doctors, away from my family, and I had to get down to what would make me be the best Mom I could be. It’s hard. I will never be the mom I dreamed of being. I will never be the one who gets up early to play loud music (music still hurts) and the one who can be crazy (that is up for debate). I will never be the mom who teaches her kids through experience and play. I will never be the mom who jumps in puddles and swings on swings next to her kids <——– I won’t be that mom.  That is hard for me to say, but I am honest with myself. I may not be that super mom who I dreamed of being, but I am still here. There were many days that I questioned the possibility of that. That has been tough. I still am remarkable for being able to take a shower, for being able to rally concerned citizens on a certain topic, for being able to throw an event that “may” make a difference in someone’s life…maybe…one day. That is my hope anyway.

Did “they” find out what was wrong with me? “They” may have helped in the discovery. We feel that somewhere down the line I had suffered a brain injury. We can pinpoint a day back in October of 2007 that caused me to show signs that I had a concussion, but I feel that I had other injuries before that day (I have had retinal detachments and other symptoms of brain trauma in my past). I feel that October 2007 was just the straw that broke the camel’s back. Unfortunately, “delayed” traumatic/mild/severe brain injuries (info at bottom of page) ARE A VERY real thing. It seems that I have had one. It is nice to find a reason or date to point to, but we will never know for sure. This I do know:

• You can be your own worst enemy
• Your family can be your own worst enemy
• Your doctor can be your worst enemy
• You can be you own best friend
• Your family “can” be a support group…if they choose to be
• Strangers can be angels sent from God to help you through trying times (I had quite a few)
• And doctors…well I am still trying to figure out which ones I like and do not like

NEVERTHELESS, you are in charge of your own health, not a stranger who barely knows you, with a prescription pad in his pocket, wearing scrubs, and talking to you about something they have never experienced. Maybe this has given you a glimpse of the HELL we have experienced the last 2 years (going on 3). I am surprised by the things I have been able to achieve and I have been blessed by the support I have gotten from surprising places.

If you feel the need to ever judge a friend or family member for what they are going through, think of this.

Those who say that “it is all in his or her head” are wrong right.
Hard to believe, but think about it. Even the healthiest person with pain is connected neurologically to being “in your head.” When you hurt your arm, the nerves in your arm send a message “to your head” that something is not right. In all retrospect, we all have pain that is in “our head.”  Your brain calculates the pain…and “in my case” if your brain isn’t calculating…then, not only is the brain confused, but that person’s body is confused, and that person is confused. Just make the situation better, don’t make it worse. You may not understand now, or ever understand what is going on in someone else’s situation but, throwing stones, calling names, making theories, talking about the person behind his or her back will never do anything but cause more confusion and bruises.

Related posts:

1. The Monster That I Know
2. How I became a Foster Mom
3. What’s Wrong With Me? Part 1