
Help Jessi get better!!!
Donation protected

My name is Jessi Tanakura; I have fibromyalgia, Celiac disease, chronic migraine, a herniated lumbar disk, and on top of that all, two years ago I was diagnosed with POTS (Postural orthostatic tachycardia syndrome). It is completely dibilitating. I have a few days a month where I can manage to stand upright and get chores or shopping done, but the rest of the 26 days of the month, I am on my couch/bed while the rest of my family (husband, 5 kids and two cats) are close by, worried about me, but basically living life to the fullest. (Now if you think that I just went to a doctor and was dignosed and sent home, you are very wrong). POTS is a rare condition that some doctors have never heard of, or even laugh at the name. The journey of me getting diagnosed was that of three trips to the hospital in an abulance--just to have a doctor diagnose me with anxiety and tell me to start yoga or grow a zen garden. I visited every doctor in Portland Metro area with absolutely no succes and had bills that were piling up by the minute! I would leave in tears at every single appointment because they all said the same thing, "....FIVE kids, huh?? That's a lot of resposibility for somone so young.... " and then hand me a perscription for xanax. (I even ran into one doctor in the bathroom after the appointment. I was in the stall, but she didn't know I was there, and her and the nurse were clearly talking about me, saying "Well that was another waste of my time. I wish those clowns would find something better to do than to bother all the professionals... I will definitely get an email from HER. Looking forward to it". We are a BOTHER to the professionals?? I just sat there in that bathroom stall deciding that I was NOT writing a letter about her I didn't want to stoop down to her level. My motto has always been "defeat them with grace". Two months later, I had a visit to a cardiologist that I almost did not go to. I was beaten down by all of the heartless doctors, drained tired and hopeless. But I pushed on because it felt in my heart that I should. Amazingly, this doctor knew of POTS very well, ordered the correct tests for me, and sat down and talked to me for over an hour! They did blood pressure and heart rate checks there in the room, and found abnormal results .My heart rate jumped to 172 upon standing from 58 sitting. She also found a murmer in my heart and wrote for several echos and a tilt table test to confirm the POTS (which it was). The reason POTS is dibilitating is because just the simple act of standing up can drop your blood pressure so low that it causes syncope (passing out). There are many other symptomes that come with it including nasuea, fatique, shaking, heat/cold intolerance, extreme chest pain, palputations, unexplainable anxiety, vision changes, and pretty much a crazy breakdown of your nervouse system. I had so much going for me. I was close to graduating with two degrees (Interior Design and Photography) while raising my 5 kids, and I had already started my own Photography business that was off to a great start. And then, BAM! The POTS hit, and my life was turned upside down. (Which meant on top of all the ambulance ride bills, labs, tests, appointment bills, I now had over $50,000 in student loans that is going to be impossible to pay!) Any business or job was looking impossible for my situiation too. And on top of all of that, the syncope caused me to pass out at the top of the stairs, and tumble to the bottom. Thankfully I was okay, but I got a herniated disc from the fall that made my body pain double from what the fibromyalgia was already doing.
But what is even worse than that is the fact that EVERY sinlge doctor that I saw had me diagnosed before he/she even walked in the room. I was just anotheryoung kid who had her own kids too early and was a big walking ball of anxiety. Some thought I was there to get drugs (even though I said nothing of the sorts). The way I was treated was absolutely uncalled for. I was sick, struggling to even sit in the chair and talk! My face was literally green, and my hands were colder than ice. But that was all an "act" to them. (My husband who was with me for a few of the appointments almost reached across the room and strangled a couple doctors, and he's a pastor!) I was laughed out of the office countless times. Left in tears every time. All I wanted was to feel better. Yet, they had no sympothy whatsoever for a girl who was "making up a story for attention". I even took my blood pressure in front of them (because they refused), and it was 80/39. Their response was, "Well some people just have low blood pressure, and you're one of them." I also lost a couple close friends because of this. I just no longer met up to their expactations. But I needed to focus on me getting well so my children were taken care of. They are my number one priority.
Now if all of that isn't bad enough, as of January 1st, my insurance was canceled with no notification to me whatsoever. I was thrown under the bus. I had to cancel many appointments, beg doctors to write spcripts of my medications, and not to take me off of their patient lists. My insurance company said that they had sent out 3 notifications to everyone, but i didn't recieve one. So then I was scrounging through the process of getting my family the medical care that we need! problem is: the soonest I will able to get insurance is March 1st. That may not seem like a long time, but we have 5 children (things are always bound to come up! And worst of all, it is ME that this affects the most. Each one of my perscriptions (And I take about 4-5) costs over 300 dollars (each) or more without insurance. I am in a downhill spriral and don't know how to get my way out. How do you decide which is the most important? Buying food or buying medication. Of course food is the logical answer. My poor husband is bringing on every single work job that he can get his hands on, but that means I'm left alone with the kiddos even longer without any help.
As of now, we are completely over our heads with medical bills, and one pastor's income to deal with that (and the family of 7). After our bill goal is reached, we want to spread awareness of POTS and related Autonomic diseases.
If you aren't able to make a donation, please simply say a prayer for all of the smart young women (and some men too) who are suffering with this disorder. Thank you and God Bless.
Organizer
Jessi Tanakura
Organizer
Oregon, OR