Dragging Dysautonomia Through My Twenties one Bitchy, Blunt and Belligerent Blog Post at a Time
You can reach me at IlanaWrites@gmail.com
I admire your inspirational story and work you are doing. I lost my vision 6 years ago after contracting a rare strand of bacterial infection that attacked my retinas. It took me two years to find all of the available resources for the blind. I was frustrated with the lack of centralized information so I created http://www.imuneek.com. Its a website that instantly connects people to all available resources on our site, like other people, organizations, doctors, news, events, and an answer forum specific to your medical condition or disability, physical or mental. i would like to work with you in spreading the awareness and resources available. Please email me at firstname.lastname@example.org so we can schedule a time to speak. I am not a blind person trying to use a computer, I am a computer user who is blind.
My heart goes out to you for all you have and still going through. I will pray for you. Miracles do happen and hope the Good Lord will heal you soon. If you are not familiar with the beautiful oasis of peace and great/extrodinary healings in Medjugorje, check it out. (Medjugorje.org) Millions go there everyyear since 1981. I’v been there several times and am always filled with a renewed peace and addidtional healing. This is a special place our good God has given us through his mother for healing. I hope and pray the best for you. God bless you.
Your story resonated with us. My son, then 7 weeks old, had jaundice, so after a routine blood test, we were surprised to hear the diagnosis from his pediatrician that he had a rare blood disorder called Neutropenia.
We were referred to a specialist at the Children’s Cancer Hospital in Syracuse, NY, where my infant endured many many testings. The doctors told me that he needed a bone marrow transplant as he only had 3% of the white cells to fight bacteria. They stressed the severity of his condition that a simple fever could send us to the ER where his condition could “crash” quickly and always feared meningitis. Unfortunately, given the rarity of his disorder, the treatment options could not ensure me that his life would improve.
It was living on pins and needles 24/7. For the first 4 months of his life, we couldn’t go out, except for doctor visits. Every night, I would disinfect my entire house, clean his sheets and toys everyday and wash my hands a hundred times a day just to spare my child any sufferings. I felt robbed as a mother. Whereas, I could give endless kisses to my 3 year old daughter, I could not kiss my son, as I feared of passing any germs to him. It was misery of the highest order.
To make this brief, I did my homework, got in touch with an organization in Canada that understood what I was facing and gave me some direction.
Those were dark years, because no one could really understand what he had and how to help me help my son lead a quality life.
Fast forward 15 years, no bone marrow transplant, no more visits to hospitals aside routine well child appointments, regular childhood illnesses, or sports related issues. Recently, he’s been diagnosed with asthma, and has had allergies, but the future is brighter with him thriving as a student athlete.
In closing, I’m not advocating going against a doctor’s advice, only sharing what I had experienced and hope others can find the answers to whatever they’re seeking and not suffer or give up.
Thank you for your (unexpected) aol piece. I have the rare disease constellation too — Ehlers Danlos, POTs – tiny fiber… hypogammaglobulinanemia – the list goes on. The nagging feeling that every time I go to see a doc…something new will appear…is always in the back of my mind. I’ve been “dumped” by doctors who just told me to deal with it – that there was nothing they could do. There was that moment of feeling sorry for myself — But they are all since gone. I now have a core team of 7 doctors who all like each other, respect each other and work together (though they are in different practices access one medical records portal) . This has made all the difference (plus I make sure they’re aware of the latest research/findings) in helping me live a productive, joyful and full life.
I am grateful to you for sharing your story.
I stumbled upon your site. I have gastroparesis and it has resulted in a pending divorce and a lot of “what am I going to do who is going to love the sick girl?” Your blog gave me a lot of comfort when I needed it most. Thank you so much. Is it weird to want to be “totally can heave into a bag in their handbag” buddies?
Hi Ilana — I’m trying to contact you for permission to reprint your work in an anthology. Please contact me at email@example.com Thanks, chris
Hello, my name is Alex, I have had POTs for the past 5 years and now have been accompanied by the brain fog anxiety depression and the general sense of helplessness. I have tried the workouts, swimming, running, walks, hikes etc. Ive done the diet, medication, salt intake and increased water consumption and all of it to no avail. I have had to create a go fund me just to cover the general expenses that disability money won’t cover every month. I know this is very selfish but I am curious if you could spread this to others who know how much of a mess this condition is. I used to be in Pre-Med school and working as an EMT in the ER when this developed now I rarely leave my house due to the fact that I totaled my fathers car driving to my dental appointment due to me passing out…. I hope those who have gone through it or know someone who has or is going through it would be more sympathetic. thank you so very much for your time.
You are one of the most talented writers on the entire Internet!
Don’t go sniffing that too much!
Which way did he go George?
Way to go on making a great site!
I’ve got this…
Eat much rice?
Try not to laugh!
Where do you buy all your hardware?
Have yourself a very good day!
Don’t forget the grilled onions!
Way to go Edward. This blog is amazing!
No one can ever say this site is boring!
Would you like some popcorn?
These two are some real messy eaters!
I really take offense at your article in IV Living where you state that you “looked like a hillbilly.” Being from Tennessee, I really take offense to reference.
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