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Liz posting!!

So I have disappeared for over a week now. That is because it was one of those days last week.  Though one of those days quickly turned into one of those weeks if you know what I mean? I have recently got a new diagnosis of a condition called chiari 1 malformation, I wont go into many details but the diagnosis was very overwhelming for me to cope with. Day after day I was sobbing at the thought of possible brain surgery in the future and progression of symptoms that can be life threatening. Just like with Dysautonomia I have met great people who have helped me to understand chiari and how to cope with it day to day.  Along with Chiari I recently found out I have hypermobility joints which doctors believe is the cause of my widespread pain. I luckily start physical therapy in a month and am getting a skin biopsy to be tested for Ehlers Danlos Syndrome. I will keep you all updated with my journey. I will do another post soon on common medical conditions linked with Dysautonomia in hopes that some of you all can get quicker answers from your doctors.

As many of us get diagnosed with several conditions each one can be more confusing and overwhelming to get over than the others. It is fair to say we will have our grieving periods and who can blame us for how much we have been through with medical expenses, doctors, unsupportive family & friends all while your dealing with a debilitating illness(s)

Though there is a light at the end of the tunnel, even though it may seem nothing ever gos rite.

Spring is here!! A beautiful time of the year. I have already made goals for myself to be pro-active and to live everyday to the fullest.

I would like to share a few goals I made for myself with you all….

(1) I loved Kyli’s advice so I went out and bought a sketch pad/journal to jot and draw in when I need to vent about my health.

(2) I made a goal on the potsie channel to find a part of yourself you lost from Dysautonomia and to spend one day doing it whether it’s drawing, photography, dancing, or going to the mall. I now inspired myself to bring the artist out in me I lost many years ago. I will post drawings later for you all to see. By the way Laura I loved your reply video…Great Job!!

(3) Since I am unable to go out most of the time, I love sitting down and playing board games with my husband. Call me old fashioned but I love Monopoly, Life, Yahtzee, & Jenga. My husband and I just got operation to play recently to joke about my possible surgery in the future

(4) Picniks are also fun during the spring  just find a sunny day. Lay a blanket in the grass sit and have a light meal. Lay back look into the blue sky, make a day out of it and listen to the nature, the breeze and take it all in. I’m planning to do that and a egg hunt for Easter

(5) I love watching cartoons!! The bright colors animated pictures and comedy keeps me smiling & thinking positive. Even if cartoons is not your thing, comedy movies in general is always a way to put a smile on your face.

(6) While the weather is nice, open windows in your house. Let the breeze come in, bake cookies and read a book. The sweet smells and relaxation with a gentle breeze is very stress relieving.

I know allot of this sounds like I have a princess & pony mindset but it helps get me through the days. It is a list of easy, relaxing, fun ideas to enjoy life while sick. Please share any ideas you have that can be added to the list 🙂

Hope to hear from you all

(hugs)

Liz here-  I’m going to explain this face book double life thing & why I chose to do it..Laura explained it so well as a whole that I wanted to explain my story. For me though I don’t have a double face book account I chose to completely get rid of my real self and I will explain why.

My real name is Leah…(From the 5awesomepotsies)

I created the account Liz Pots so friends & family could not search for me.

Why not have them spying on my life..you ask?   Why hide myself?

It’s simple I’m not hiding from anyone!!  I chose to disconnect from family & old friends. Like most of us I have been through so much in life that I could no longer take the fake side of people and extra stress. I could not take the silence on my old account. In person I needed support & love which I never got as a child or as a newly diagnoses pots patient. I wasted months under what I felt like was an  interrogation trying to explain myself to the people who would never care.

The sad truth is, most people don’t care.. family included. I learned that the hard way after losing friends. At least I thought they were. In October after I was diagnosed with Pots I was on top of the world I finally knew what I had and I could openly explain it to friends and family, who thought I was a hypochondriac after all these years.

For me that was a lost cause. I was wasting valuble time & energy explaining Pots to people who just didn’t care and never will. Not all of your family & friends may be like that, so it can be hard for some people to say why me or my friends took this approach. Some may have a very strong support group while others are all alone.

We all have our reasons but for me after my diagnoses, being open on face book I thought was the way to go. Little did I know  a month later I lost several friends who I knew were gossiping about my health and they way I talked about it. I was raised in a family where you if  have a health issue you ignore it and deal with it without talking about it or showing emotion. As a child I was often ignored for that reason & led me to a late diagnosis.

My brother has type 1 diabetes and even when I ask him questions and I take interest he acts as if it’s a crime to talk about it.  After being open about Pots my brother has not called me in 5 months… and yes I tried calling him (this was a brother who used to talk to me daily) I cant help but to feel he is angry that I share this condition with the world and  he hides the fact he has diabetes from everyone around him.  Because of that he almost had a seizure a couple years back because he would not tell us he needed to eat & that he felt sick so his sugar levels tanked.

All in all most people atleast in my family treat it like a crime if we talk about our health. I can rant & rave about pots because they will never want to understand it. Like Laura said it’s like explaining photography to a bird watcher. They will never get it. Why waste the energy?

Look at your friends list..how many of them are true friends..really? Allot just spy and gossip they can make fun of your life and still not even care to understand all behind their computor screen. I was exausted of trying to be myself and fight with the harsh critisism.

No one should have to experience that if they dont feel up to it.  After creating my private page with friends I knew would understand.  I have not looked back. From a old friends list of 40 I was venting to 30 of the wrong people this whole time 30 of whome never even talked or commented on me.  Even though they spied on my life with no remark, in person they acted as if I was fine and put my through struggles they knew I vented about online.

I don’t need people like that in my life. Sometimes for situations like that it takes a strong person to break off of the ones around them. The way I saw it is if they are making my health worse they are not worth having in my life…

Point Blank!!

Do what you feel is rite in your situation, but please don’t question the people that do it. We have all been questioned enough with our health. Any private or double account made should be a way to escape from that. Please Understand

To Laura & Gwen- It takes strength to do what you did, I promise you wont look back. In both your cases I’m glad you both didn’t have to fully disconnect from family the way I did I don’t encourage that at all. I just did in my situation and by personal choice.

Thank You

-Liz

Liz Posting- First let me thank Laura for creating this great blog where we can all vent & help one another.
Thanks Laura!! 🙂

This logo was created for one purpose. To grab attention and to say screw you to Dysautonomia and the medical community. Actually I guess that was three purposes but you know what I mean. If you are someone afflicted by this condition or who knows someone with it. I think I can speak on behalf of all of us where we have our days where we just want to say FU! Dysautonomia & Ignorant Doctors. Please help to spread the finger for awareness. There is also a Dysautonomia Awareness Petition that is now at over 1,500 signatures!! Please Sign, get your parents to sign, your next door neighbor, or anyone who has a IP address. Here is the link below