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.
I havent read your bog or book yet but am planning to. I just read yout article in the Huffington Post about disbelieving family members. You know that silly feeling where that thing that is really known as “coincidence” insists it must have been kismet this eas placed on front of you and your cheat kind of swells and your eyes water and your hair stands up and tingles on your arms? Yeah that was your article to me, just 5 min ago. See, for 13 years I have been dealing with a severe casw of Kliene Levin Syndrome which is where you sleep for days at a time, are a completely different person when you are awake for a lil’ then it goes away. Excrpt mine only went away in the fieat few years and then for a very excoting 10 no in 2017. I sleep for days. I actually live, if each person sleeps 8 hours a night, 1/6 of the life that they do. That includes sleep time and incoherent unable to form a sentence but sidnt you used to be a whats it called? Oh you know. That thing I wanted to do. Since I was 3. I have a degree in… No that’s no…. A readerWRITER yes a writer. Yeah I was one of those. But I am alive about 55 days a year so it turns out I’m not 39 but 28. Who knew? Me. My mom believes me. Every doctor ive ever seen believes me, even the really awful ones. None of them think it has anything to do with the meds I take or anxiety or a job I lost over a decade ago. And you know what else these doctors never do? Make me feel like shit for having to reschedule an appointment or showing up in a state in which I am only there in body and may act strange. None plan interventions for me or call my mom an enabler because I am on less than 1 mg of suboxone (avg dose 16mg), 15 .5 klonopin a month and adderall which I take while sleeping without effect. No, that is the man who wrote me love notes in my lunches every singlr day until and through high school, yhe one who took my friends and I to ska shows every Fri night in Philly, who let male friends of mine stay in our attic when they didnt have anywhere to go – and they called him “Dad.” He is also the guy who, when I was already long gone, was positioned in the 2007-8 financial chrisis as thr boss of a 6 employee mortgage lender company who relied on referrals for over 90% of their business and has about 10 mil in the bank now because of it. He took me to thr first Eagles National Championships. We uses to sit in thr 700 level of vet stadium together, his small bottles of vodka secured in my bra. We amoked weed together the 3 times we saw dylan. We were best friends for 26 years. Now he pays my medical insurance and loves to hold – not my brother’s $150k wedding or his stepson’s oxy rehab or his step daughters grad school and upper e sode apartment – that, my health insurance, over my head. He and I speakn on thr phone for 5 min and I cry for an hour, spiral into sleep quickly. I wrote him a 1.5 pg letter once to try and explain that I’m really sick and all I did was mention past traumas I had to show that I have always sprung back like a kid’s sand-bottom plastic punching bag. But he didn’t get that far in the sentence. He didn’t like my mentioning any of the reasons I am still in therapy for ptsd (didnt mention that at all) so he erased it right there. Click. Thr really messed up thing if I put them all togrthrr I could probably fill 5 Moleskins with the letters I have written over 13 years to him. Yes, there are also every single one of the friends I had when I became sick and the rest of my immediate and larger family (except my mother’s brother who also suffered from a milder, shorter form of the syndrome in college) but they are both not as cruel normal they have anything to hang over my head. He doesnt care he has made mme feel suicidal with his words, as much as he made me feel special and loved as a child. He says we just need to agree to disagree that I’m sick. He says dont mention thr past even though thr last 13 years have not chaged except time went by and he moved from philly to… Georgia?!? And met a woman who calls black people “coons,” made fun of the hebrew language during our family’s seder while throwing my broyhrr’s yamakah across the room in his own home and told us (before she started swinging on my sister in law who was holsing my fathers first grandchild, her 3 month old son) that if someone who looked hispanic was at her hospital dying she would ask for proof of residency before saving their life of she could (as an x-ray techs assistant) and her last name is… Maldonado? But he is a grown man and her toxic hateful disgusting self is not his keeper. So I’m ready to tell him goodbye. How will I pay gor the insurance? I am hoping I will get an apology before and credit cards are maxed out and I have to declare bankruptcy.
Before my mom’s 401k is gone. Before he dies. This past year ehile I was ignpri g his phone calls he got cancer. He’s ok now but that was thr last time we talked. He said he was laying low, not really seeing his friends or walking around thr gated community. I asked why. He said “they all just want-” “to talk about your illness? Like it is the only part od you there is? When you have so much more you want peoole to know about you?” “Exactly.” He is astonished. “How did you know?” I thought that was enough and I hope I’m doing thebright thing by telling him that he has been cruel and mean and taunting and demoralizing over time and never not once has he looked up my meds functions or gone to Klsfoundation.com ot a doctors appt with me or watched one of those Sleeping Beauty Syndrome Youtube videos. He used to put a love poem in my sack lunch ecery day and he cant spend 5 min in 13 years learning about my illness or being empathtic or finding a reason to br proud instead of all of the ones he says he is not? Does he know I spent 6 years at one point without a single friend? That I did not make any friends until I got better for that chunk of time – exactly at the 10 year mark which is the avg time kls lasts for females so how cruel it has been shutting down the switches of my headspace’s lights one by one like Sam at the end of “Cheers:” Goodnight, baby, career, house, plans, vacations, ATM card, car made in past 15 years, apartment with my friend, trip to see my dad, brothet’s 30th surprise, relationship with the man I was falling in love with – and that theyve all since left again? Why tell me he doesnt like seeing relatives or friends because they talk about their kids and they ask how I am doing and he is so ashamed. I need that? Its like some people think I’m nothing but a syndrome. And it is his loss, right? He CA apologize or go his own way.
Thank you for your article. I would appreciate your opinion. I went thru your little checklist avout your family member and I think the only difference is the he and I were once inseprably close. Mightve been one more….. JR
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