You can also find me in Kill Your Darlings, online and print journal, The Victorian Writer (Health Edition Nov 2015), online for Writer's Victoria and ABC Ramp UP, and multiple online support groups. I've also contributed a chapter to a book about Dysautonomia. I've presented at the Emerging Writers' Festival (as part of Kill Your Darlings, Nerds gone Wild) in 2015. Been a featured artist for the 2015 Digital Writers Festival in conjunction with Extraordinary Routines and a panelist for The Digital Writers Festival 2016 . I've also performed pieces at a number of Salons for Writers Victoria. I've managed to get my mug on No Limits TV as a panelist, been interviewed for Hot Chicks With Big Brains Issue 1, and the Fully Sick Podcast.
Rusty Hoe: Me. Myself and I. Charming. Gorgeous, Killer thighs. Potentially delusional.
Mr Grumpy: My husband. Love of my life. Occasionally makes me want to shave off one of his eyebrows in his sleep. Champion farter, quite decent hand holder, incredibly humourous, purchaser of Lindt chocolate bunnies, lover of cricket, single handedly trying to bring bogan flannel shirts back into fashion.
Rug Rats, Monkey Boys, The L-plater etc: My two male offspring. 19 and 22-year-old. Although, they are responsible for nearly every grey hair on my head, they can pop up with a fleeting moment of pure loveliness that makes it all worthwhile.
Freyja: Our Great Dane. Anxious, prima donna, who knows she is super cute, and milks it for all it's worth. Continues to think she is a lap dog, and will attempt to plonk her 60kg butt on any unprotected laps. Equally flatulent and slobbery and will do anything for a pat.
Sharona, Gloria, Roxanne, 5 chicks: Flock of pampered chickens. Living it up in a red chook house complete with discoball and bunting.
Now to conduct a scintillating interview with myself.
Me: Why are you called Rusty Hoe?
Self: I was named Rusty Hoe by my delightful family. One night around the dinner table, we were discussing how I had devolved from the brains of the family to not the sharpest tool in the shed. Mr Grumpy, decided that not only was I not the sharpest tool in the shed, but I was the rusty hoe left out the back of the shed. Whilst it took Mr Grumpy a while to catch on to what he had said, the monkey boys burst into fits of laughter at their father's faux pas. What will be the salient moment my children will recall from their youth? That their father called heir mother a 'hoe' at the dinner table.
Me: Your occupation is, 'Trophy Wife'?
Self: Why yes it is. I know Mr Grumpy thinks of himself as super lucky to have scored such a fine example of womanhood as myself. And it sounds much more exciting than unemployed, housebound and disabled. I am also quite good at tripping over flat floors and walking into walls, does "unco" count as an occupation? I definitely spend much of my day in this activity. Once upon a time I had a real job as a Neuropsychologist, where I brushed my hair, put on real clothes, saw patients and carried on intellectual conversations. Now I discuss bodily fluids, brain fog and shower chairs,.... actually nothing much has changed, though my current wardrobe sucks.
Me: So I hear you're from Australia. Does everyone ride kangaroos?
Self: Me, you're an idiot. We only break out the kangaroos for special occasions, like weddings and birthdays. The rest of the time we ride wombats.
Me: Why do you call Dysautonomia 'Bob'? And did someone named Bob do you wrong?
Self: Have you ever tried to say or spell Dysautonomia? It's damn hard, especially when you have brain fog. Don't forget I'm the woman who spent an hour looking for the car keys that were in her hand the whole time. I'm not exactly playing with a full deck anymore. Me, you've got to stop listening to country music songs. No one named Bob did me wrong, this is not "another, somebody, done somebody wrong, song". There is no vendetta against the Bob's of this world. However, people who say 'revert back' should be flogged and made to watch Glitter on loop. 'Bob' was simply the first name that popped into my head. It's short and sweet and spelled the same backwards and forwards. Basically, it's less likely to be a balls up.
Me; So what's this weird arse Bob all about?
Self: Well it's a bit of a arse really in that it affects numerous body parts/systems. There's a part of the body called the autonomic system (ANS), which is essentially the body's autopilot. It manages all the processes we don't consciously control eg blood pressure, heart rate, body temperature, digestion, to name but a few. When it decides not to work, or work intermittently, anymore you get Bob. For some it is only mild, for others severe. I'm one of those anal retentive, perfectionist types so I went all out and got me some of the severer type. None of this half assessed mild stuff for me. No way, no how. Now whilst my tightly puckered sphincter of a personality helped me career wise, it is not so helpful on the Bob front. There is no cure, no known cause in the majority of cases, all you can do is manage the symptoms with medication, diet, and lifestyle modifications. If you're lucky like me it gets to progress. Woo Hoo, way to go anal girl! (If you want to know more here's a tad more serious and scientific explanation).
Me: Bummer dude. What type of Bob do you have?
Self: As things stand now I have "Michelle's Disease". Yup me an Lou Gherig, way to go Rusty. I don't fit anywhere. I don't meet the current criteria for POTS, NCS or the other main subtypes. I have a little bit from each of the subtypes, the Heinz Variety form of Dysautonomia, if you will. I do have OI (Orthostatic Intolerance) which is just a fancy way of saying standing up is a difficult and my body is much happier in the horizontal. Gravity, the Moriarty to my Holmes. I also have a delightful collection of other symptoms and diagnoses, because a girl can't have just one major illness to deal with. A neuropathy that is slowly (well actually not all that slowly) waging war on my body. It does have bonuses like I no longer feel it when I burn my arm on steam from a pot. Though it can be a bummer like I don't feel my arm when I burn it on steam from a pot. Woo Hoo!
I also have a collection of other fun diagnoses, but other than that, I'm a picture of health!
Me: I've heard you call it 'Yellow Wiggle Syndrome', why is that?
Self: Greg Page, aka the Yellow Wiggle, is the most famous Bob patient. He had to quit The Wiggles when his form of Bob became so severe. It actually helped legitimize the disorder for many of us. I.E. If Greg Page had to quit it must be a serious illness. Luckily he has better management of his symptoms and has donned the yellow skivvy once more. Sadly, not all of us are that lucky.
Me: So now you've got a pacemaker? What the hell lady, you're only 40!
Self: I know, I know. I'm a freak. But hey, what can you do? Having a heart beat is kinda important, or so my doctors tell me. Apparently my lazy-arse body just couldn't be bothered beating it's own heart any more. Typical. Bradycardia does suck though. There is just no elegantly way to collapse when your heart rate drops too low. Plus face planting on your gross kitchen floor is not nice. The whole falling malarky is bad enough, but no one wants to come to with pieces of festy rice stuck to their cheek. Mind you having Jeri (my pacemaker), beating away in there is kind of comforting. And having blood get around your body does make you feel a wee bit better. Who'd a thunk it? Mind you reading that my pacemaker buddy, David Attenborough is not slowing down following his surgery, does reinforce that not only am I not an 80-year-old woman, but I am not even and 87-year-old wildlife loving man!. (Disclaimer: David Attenborough, may not actually know that we are pacemaker buddies. Disclaimer II: I may be somewhat delusional.)
Me: Anything else you want to let the world know?
Self: I could go on for hours and hours, but really that's just cruel to everyone. My final thought would be when the universe craps a huge steaming nard on your life you have to laugh. Life's to short to be serious. Plus Sci Fi rocks, I have a tendency to use the word 'crap', a lot, Jensen Ackles is welcome to come to my house anytime to give me back rubs, coffee and chocolate should be at the top of Maslow's hierarchy of needs, white chocolate is not chocolate, tequila should come in IVs, spelling and grammar are over-rated, farts are funny no matter your age, everyone should own a pair of Dorothy Shoes, and "I want to be called Loretta".
Just had to thank you for taking the time - and the energy - to put together this blog. There's something wonderful at being able to laugh over this horrid illness... I mean, really, I really appreciate being able to go to this blog and knowing I'm going to have the opportunity to smile and make my face hurt. :)(Yes even using muscles to smile can cause pain...) :)ReplyDelete
Just had to say thanks,
Thanks for your lovely comment Nonna. Means a lot to know I can make even one person's journey a little better. Glad I can bring a smile to your face. :)ReplyDelete
MissNikkiAnn - thanks :)ReplyDelete
love your blog... nice to "meet" you. Although my Bob and your Bob might already know each other... depending on where Bobs come from *shrugs*ReplyDelete
Susan - nice to meet you too ;) Those Bob's do tend to hang around together so I'm sure they know each other.ReplyDelete
Thank you so much for your site. I found it today, and well, I haven't checked much off the to-do list since. After the past two horrible weeks, your blog has been very encouraging. I'm so glad to have found a site that matches my sense of humor and isn't so... well, encouraging. That Everything's-going-to-be-okay crap gets old. I was diagnosed with Dysautonomia a few months ago, and it's nice that my "problem" finally has a name--Bob. I've been struggling with it since I was 11. I am now 19 and in college, hoping to one day become a nurse pracitioner. It is becoming increasingly hard to give school the attention it deserves. And having your advisor tell you you need a back-up plan because you may not be able to keep up with the demands of being a nurse is tough. I must admit I wanted to scream that I had a 4.0 GPA, and I was sure that was better than she ever got or she wouldn't be an advisor. But I refrained, considering my future is a little bit in her hands. I am determined to keep my grades up just to prove her wrong. In addition to having someone I barely know judge me, my friends and roomate don't understand either. I am lovingly referred to as "the shut-in." And when I say "lovingly," I mean I had it screamed at me. They don't understand why I need to sleep 12 hours a day and am still tired or why I need the mountain of medication that completely covers my nightstand. Once sympathetic friends are now tired of my "excuses." So back to my point after my long, rambling melodrama. It's so nice to have someone who understands, even if you are in Australia and I'm in Alabama.ReplyDelete
Love from the land of Forrest Gump,
Callie - thanks for your message. That "everything is going to be okay crap" does get old at times. No one has ever accused me of being permanently perky girl, not to say I don't find stuff to enjoy life, but perky gets tiring after a while. As you may have deduced, sarcasm is my key to survival. It's a highly under-rated coping mechanism. Sorry to hear things have been so tough for you. It's hard when it impacts on things like study, friendships and well, life. I know it's no real consolation but it definitely helps you to weed out your true friends from the crap. So from one "Shut In" to another I say hang in there and if ever you need a dose of sarcasm and inappropriate humour I'm here with a bucketful. :)ReplyDelete
Your so funny and I just wanted to thank you for bringing a much needed smile to my face with your writings! I can competely empathise with your symptoms and I even have my own Mr Grumpy supporting me!! We are lucky to have them :) Thank you once again, I added your link to my own bloggie, I hope thats ok :)ReplyDelete
Love your blog. I have my own version of Bob as well. Keep up the humor, you have lightened my disheartened day. I will be back for more.ReplyDelete
Thanks Rebecca. Glad I could help a little to brighten your day :)Delete
I have just discovered your blog via one of the dysautonomia groups .. and I have just spent the last 15 minutes sitting here in front of the screen with tears pouring down my face .. a rather unexpected emotional reaction!! It has been like reading about my life & it is rather overwhelming after living with 'Bob' for the last 3 years to know there are others who know what it feels like ... thank youReplyDelete
I know when I first starting finding others who had Bob it was such a relief. Back in 2006/2007 here in Australia there was very little information and I knew no one with any version of Bob. Finding those first few people who were like me and knew exactly what I was going through was a blessing. It's such a relief to know you're not alone :)Delete
Hi Rusty, I am so thankful to have found your blog. My 8yr has been diagnosed with dysautonomia and I have been trying to found out more information on the disease especially with children. I feel like I am in the dark because my daughter doesn't understand why she doesn't feel good and I don't know how to explain it to her to where she can understand it because honestly I don't understand it!! The dr has put her on some medicine to help maintaining her fluids, so hopefully it will help. She has a echogram this Wednesday, so hopefully that will turn up fine...we will see!! If you have any information about websites/blogs for children with the disease I would be so grateful for any information. I did find one website for children: DYNA (http://www.dynainc.org/) and this has been very helpful! Thank you for sharing your story!! :)ReplyDelete
So sorry to hear your daughter has been diagnosed with Dysautonomia. It's hard enough to deal with as an adult but I can't imagine what it must be like for such a young child. As a mum of a child with a range of health issues (we have only just had the joy or major knee surgery for my 14 yr old thanks to a connective tissue disorder which meant his patella kept sublaxing and dislocating, even from something as simple as standing), I know how hard it is as a parent as well. Watching your child so ill and either not knowing what is going on or what to do can be heart breaking. Not sure where you are but the main kids resource is definitely http://www.dynakids.org/ They are probably the best kids directed site with information for parents, kids, schools, doctors etc. They also have meet ups and support groups. There was also a recent book put out by a mum of a child with POTS, "POTS: Together we stand. Riding the waves of Dysautonomia" by Jodi Epstein Rhum, who also runs the POTS group of Face Book, which may be useful, especially if you are in the US. Here's the link. http://www.amazon.com/POTS-Together-Stand-Riding-Dysautonomia/dp/1466371501/ref=sr_1_1?ie=UTF8&qid=1332171640&sr=8-1 Hang in there and know you are doing a great job under stressful circumstances. Your daughter is lucky to have you there supporting and advocating for her. :)Delete
Mayby i lost my memory RustyHoe eplaining earlier to ya? Before my grade school began,felt somthing eletrical take place in center of the of back never to physically,and all that comes whith it again.I searched,after the ttt and found 1 of finest pysician's here in "toledo Dr.Blair Grubb" At first it was,hope then was frend'd's ,he past me on,to his .finest nurse BeverlyI while on medicid, I thought that this was all my fault alcohol became my freind,not my best but jailj toDelete
What a brilliant blog. It made me smile and it is so true. But still we have to somehow accept that we may have lost part of the person we were. Sad, but somewhere we find the determination to deal with that. I think having the ability to laugh is a great quality to have, and makes lives difficulties seem easier.ReplyDelete
Thanks Anon. I think it is a continuing process. I'm good for ages and can laugh at it all. Then every now and then it seems to pile up. I try not to beat myself up about it now and just ride the wave of it all. Glad I could at least give you a couple of smiles.Delete
Brilliant - that is a good descriptive word for this blog and it's author. The humor is wonderful; I was laughing and crying at my desk at work here in Houston, Texas. My grandson has this dreadful condition. I won't go on about how terribly sad it is, but, well it is. Thank you for the laughter and the education. Living with Bob is a bright spot in a dark place - I shall visit here often. - CarmellaReplyDelete
Thanks for your lovely comment Carmella. So sorry to hear about your grandson. It's hard enough as an adult but I can't imagine having it as a child. xxDelete
Connective tissue issues...I assume you've been checked out for Ehlers Danlos Syndrome? My daughter, her dad and family were incorrectly diagnosed with EDS...turns out they have Osteogenesis Imperfecta instead (uh...yay?)ReplyDelete
I meet the criteria for EDS III but trying to find a doctor who is knowledgeable or willing to diagnose is ridiculously difficult. My GP, cardio and PT all agree I have some form of connective tissue issue but no one seems willing to go the extra mile with a title. My youngest has it far worse than me, 2 knee recos this year thanks to patellas that won't stay put. :(Delete
Very, very funny! THANK YOUReplyDelete
Thanks Madora :)Delete
I've been reading the blog for some time now, but I never read the 'about me' part of it! I too, have a ANS dysautonomia that fits in a few categories as well as a few other dx that are not Bob related (at least that's what the docs think). I love your wit and honesty, sarcasm and realism, as well as all you do to raise awareness and educate people. Thank you, and congrats on the WEGO nomination!ReplyDelete
Thanks Jamie. I think there are a few of us who are in the same boat. It really isn't a nice discreet type of disorder and so many of us have other things going on. Sarcasm really is the only way to deal with it all. :)Delete
I have been following your facebook page for a while now and I thought 1 day I will read that to find out what/who Bob is. Finally I have done it. Very well written and I am glad you are able to have a laugh and a joke. Congrats on your nomination for an Award, from what I have read so far you deserve it.ReplyDelete
Thanks for stopping by Fit Fab Forty. Definitely have to find a laugh in all this otherwise it's pretty easy to lose yourself. :)ReplyDelete
misery does love company....having read your blog accidentally (yes I admit it)...I also have Bob, which I had to basically diagnose piece-by-piece over a number of years. I am a Bobbed out, former Nurse Practitioner, living in a rural area, rarely leave the porch except for med appointments. I have a Mr. Grump that I call Gumby, a former US career Marine and this illness has its toll on him (I call him Gumby). My grown children and family members view Bob as an excuse to give up on live and sleep all the time. I do my best to love them anyway (insert uproarious laughter here). My Bob is likely secondary to nearly forty years of insulin dependent diabetes. Not a lot is known medically....and due to my limited exposure to others, I have felt isolated and alone for a long time. Looking forward to reading more of your blog.ReplyDelete
Casey Toney (caseytoney@yahoo dot com)
Sorry it's taken so long to get back to Casey seems I didn't get the notification. My Mr Grumpy was a career airtraffic controller in the RAAF over here so we have a lot in common. Seems a lot of us are flying blind with all this but at least we are flying together. xxDelete
Ooh, I'm glad I found this blog. I really love the idea of calling it "Bob". I want a free unicorn, so I will be sharing some of your posts. :)ReplyDelete
The free unicorn has been a great selling point!Delete
hello sweetheart, so delighted to find your blog, it id delightful, brought me to tears. I have a adrenal insufficiency and share your pain. thank you for giving of yourself and helping me to laugh at myself. hugs for that gal! firstname.lastname@example.orgReplyDelete
Thanks and welcome Anon. There are definitely a lot of cross overs with adrenal insufficiency :)Delete
Great blog. I've been living with Bob for almost 20 years now. had to stop working in 2000. I am (was??) a Clinical Psychologist.ReplyDelete
I was/am?? a Clinical Psychologist but had to stop working in 2000. Went from using a lot of my brain to what is left of it!
I love your about me page. I also love how you can have so much humor in the face of all this. Yes I am the abnormal on too I get everything severe. The world is allergic to me or I it wither one at this point. Dysautonomia is a living nightmare some days. When walking into walls or tripping over a flat surface I jusr say who put that imaginary thing there...only thing you can do. Face first on a flat surface or face first into a wall. That really should move out of the way.ReplyDelete
Hi Michelle.You have company such as it is with my perverted sense of humour,-- hmmmif I couldsummon up a few more brain cells would describe that better.ReplyDelete
thx for the smile I have reading this -- have a good day
I don't know if there is a forum or something somewhere, or somewhere more appropriate I should be posting this, but thankyou for your blog.ReplyDelete
I have my own Bob - currently classed as "an unspecified dysautonomia" by the cardiologist and neurologist.
I am fed up with friends and family who just don't seem to understand, who think I am lazy, or antisocial, or a malingerer - "are you still poorly?" "don't you have a job yet" "why aren't you coming to the wedding/christening/barbecue" "what are all the tablets for" and a society that seems to blame the person with the illness as if it is out fault we are like we are.
I am fed up of feeling crappy, day after day after day. I remember when I had energy - I went running, I went to the gym daily, I walked everywhere, I worked my full time job and a part time job and I volunteered with 2 charities! I went for nights out and holidays, I met friends for coffee and cake, I shopped, and went bowling and took hikes up hills for fun! Now each day starts in pain, ends in pain, and has pain all through the middle. I fall over because my body just won't keep me upright. I take so many pills that if I had the energy to jump I would rattle.
It is horrible to know other people are suffering but nice to know I am not alone. Sorry for the complaining and keep blogging please!
I too have my own Bob, the real one for me is very sadly no longer with me as he was my lovely Dad, the pain in the a..s one is called Dizzy Rascal to me, because mostly 'he' make me feel c rap but sometimes he makes me feel even c rapper!
I fully understand where you are coming from regarding people not understanding, and your description of your previous life reads almost identical to mine, minus the gym, walking was my favourite exercise, the freedom to take off alone when I needed some headspace, the loss of this really distresses me a lot, I liken my life to getting a non-parole life sentence for a crime I didn't commit! It took 6 years before I was actually told what I had did have a name, which helped, but didn't help a lot of the people around me to understand that I still didn't have much control over how I feel and how it affects my life, I guess I just have to accept there are a lot of people who prefer to consider me a lazy, unsociable, malingerer, the saddest thing about that is my husband lost a lot of friends because they seem to feel I trapped him into marrying me (we met not long before my Dys started to surface with a vengeance) he use to socialise with them and his first wife, and they chose to be friendly with her instead, fairweather indeed! All I can say to you is that you have to keep telling yourself how strong you are, especially mentally, to keep getting up each day and dealing with this bloody condition, I had a pig of a night last night because I stupidly chose to eat too many roasted peanuts in the evening, which my gut found stressful to digest, so I beat myself up for being stupid, and it has left me feeling really washed out today, but I know if I take it very gently with myself today I should feel better tomorrow, I do get fed up with having to be so vigilant with what I do and eat, but I try to remind myself that at least I don't have a terminal disease that guarantees a short time left with the family and friends that do love me. It's hard to be positive I know, but as someone who, like me, use to be so active and full of life, keep reminding yourself that it is Not your fault that you have this condition (it took me a long time to feel that, I was an 'enforced' Catholic, my mother an Irish Catholic so I got the full works, including a Convent School, which gave me an ingrained guilt about everything!) Try and see the fact that tomorrow will almost certainly be better if you are having a bad one, and keep your chin up. Tricia xx
We don't even know what's going on with me. Once we got back to the states and my parents, who hadn't seen me in a while, had seen how much my health had deteriorated they sprang into action. only THEN did it make sense that I had been fighting "something" all along. One of the surgeries had a horrible side effect that also left me with issues with food. (I frequently get the rare list of side effects for medications and procedures, oh fun) But at least Michelle gives us the guts to name and fight back and it helps that I have met so many wonderful people through her site that have other things that we all make sense to each other. Yes my problems (unknown at the time) and my former spouses KNOWN issues did cause a HUGE stress on our marriage (In fact it probably is why it ended) but after a while apart he visited and asked to see the scars (Losing 45 out of the 100+ I had been fighting to lose over the years probably helped too) from the surgeries and realized what had really been happening all along. Even the surgeon was appalled it had been left for so long. Slowly we're working it out again. Learning to Juggle our "spoons" wisely and to not get so upset if someone's runs out early. Slowly things are better. Vera is a big pain and a witch but she can be fought to some degree. Which is a blessing. Tomorrow WILL be better if we let it. There is a whole bunch of people here that are proof of that!Delete
Your Bob must be Married to my Antagonist Vera. We don't know who she is or where she came from but life with her sucks worse then living with my Ex husband. No seriously. Now it's like "There were serious medical issues all along, you weren't just trying to be difficult, oh crud, my bad" He has his own problems too so it was a hard combination. But even without knowing what exactly is going on it sure helps to know there is a great group of people that understands not to hold my bad days against me, lol! I originally found your blog when I found out a friend's child (teen) had dysautonomia. I went looking on my own to understand without trying to harass their family too much. Turns out I found out more about myself at the same time. It helps so much to be able to laugh about my weird days and to be able to put my foot down about my feeling bad without looking lazy at the same time. Especially with a 12 and a 15 year old boys at home myself. (I have 2 younger girlies as well) TY for this wonderful home on the web for so many and for connecting us. I actually found a "neighbor" (2 hours away) that understands the uniqueness that is living in swamp. How cool is that! (I think through Mildly medicated via your FB page about her) Again I don't know what Vera is exactly, but learning that, while still a big unknown, it's easier to deal with it by admitting that there is a hostile takeover and fighting back with style! Now if we could just find awesome compression hose here in the states like you have life would be good. I was in an "accident" when I was young and have always had and still have circulatory problems so it didn't end well. And my former spouse won't wear his at all, lol. I wish we had options for that. (hint, hint, hint) Much love from the States!ReplyDelete
I assume I have Bob, can't find anybody willing to diagnose EDS, and narcolepsy. I too love science fiction, and in fact met my husband at the Melbourne Science Fiction Club. I have often told him that I have considered shaving off one of his eyebrows as he sleeps.ReplyDelete
I am excited that you are cool, local, and not remotely delusional about a) your awesomeness and b) Bob.
Thank you for your normal perspective :)
Really enjoyed your blog, I'm type A perfectionist personality Virgo who was prior psy here in USA. Was in 2nd Psy Masters specialization Industrial/ Org Psy (need break heavy duty psy work) when I became unable to comprehend/retain much less hold my 3.98 GPA. Devistated my career and derailed life in every way since then! I know what you mean about being brains then rusty mind, hard for me ... wish I had your positive humor! I get treated like sh*t now, despite long term memory great, short term embarrassing.ReplyDelete
I posted from another location and accidentally called you Bob, sorry didn't know until reading your blog here. Congrats you can hold it together with Dys. & teens, I was guidance counselor too ... handful you've got, but worth it! I only have pets after my 3 reproductive surgery, but they take work as you know from your huge Danes. Gosh I'm mere 95lbs, I'd get squashed lol! They are my unconditional loves!
Lastly I'm in between forms Dysautonomia it appears as well. There is a genetic component which finally shed light (dad failed tilt test in 30 secs while in 60's, he was nicknamed Energizer Bunny bc never sat still, drs feel why he lasted soooo long no dx. Appears strains in his family genetics and don't know if his pride or embarrassment but he hasn't even read Dysautonomia book I sent him, nor accepts my reality, very sick form of Dys. I've got it bad ... adrenaline fluctuations look like adrenal tumors, sweat like pig, inability regulate body temp heat, collapse instantly overheat, yet can take potatoes out of stove with hands! Severe, Rx resistant nausea and recently dx having Gastroparesis yet my lower stomach, severe cramping and bathroom issues requiring hospitalization. I get 'episodes' where whole body flips out, not just tachycardia, but literally need grunt on speaker phone so dad knows I'm conscious. BP goes up/down, cardio isnt biggest issue. I get headaches, stabbing ice pick feel in eye, energizer bunny adrenaline until severe fatigue, currently serious urinary issues from last hospital screw up in Sept. In for gastro internal bleeding, pain, constipation and was admitted. Went tachycardia, they put IV sci-fi speed never seen before and my little body couldn't handle. Couldn't pee, looked prego,crying and when roed in ultrasound said my bladder going explode and double kidney failure. Needed painful big catheter asap or body bag, I freaked!! Still nightmares and developing phobia going hospital, even though need.
Wish they would focus more on the other forms aside from POTS. Sorry rambling, part of my cognitive deficits I have now. Anyway have a good remainder of week! Jennifer