Help Christina get her life back

Hi friends and family,

I am ashamed and embarrassed to ask for help, but I feel I have been left with no choice. As some of you may know, I have been suffering from many chronic conditions for over 15 years now. The root cause has not been known until recently. Previously, I was a healthy person. I have found out in the last 6 months or so that the debilitating exhaustion, migraines, lack of cognitive function (I have not been able to

read a book or more than a very short article for many years), debilitating pain and difficulty chewing, swallowing, and breathing, and a million other symptoms for over 15 years, have all come from the fact that I cannot breathe properly. I have a major skeletal jaw deficiency that developed when I was a child. A massive warning sign was needing orthodontics starting at age 5 because my mandible (lower jaw) was not growing properly to give me a any sort of functional bite. I always had too small of an airway and jaw, but it became completely debilitating after my wisdom teeth removal at age 18 (which made my airway even smaller). I desperately need jaw surgery, more specifically double jaw surgery.

I have extremely recessed both top (maxilla) and bottom (mandible) jaws. I cannot breathe properly because the airway which is behind the jaws is so insanely small....less than 3mm at the worst spot (normal is 11-12mm). I am suffocating all night every night, trying to breathe and I was diagnosed with extreme UARS (upper airway resistance syndrome). The UARS is actually much worse than sleep apnea as it is not

treated by a CPAP and basically, my body is running a marathon every night trying to breathe....it never gets chance to rest, which is essential in sleep. My brain and body are in constant flight or fight mode, which as you can imagine, is a terrible way to live. I am not ever able to get into deep or REM sleep. In fact, I discovered this myself by finding that I feel less terrible when I stay up all night; that is how stressful sleep is for my body.

I had a procedure done by an ENT surgeon who specializes in sleep issues. She performed a DISE (drug-induced sleep endoscopy). During the DISE you are anesthetized and the ENT surgeon can look down your airway to see what is going on. This costly test ($900) confirmed that I have multiple, partial collapses at every level of the airway and that the actual airway itself is far too narrow. I also have both jaws that

are on the small side width wise for a 4–5 year old child. My tongue does not remotely fit in my mouth properly, which is also contributing to the breathing issues and causing me a lot of pain. As the sleep ENT surgeon and jaw surgeons have explained to me, I'm breathing through the equivalent of a stir straw. My jaws are also in the wrong position, causing me so much pain and suffering, which is also making them continue to deteriorate.

So, lucky for me, I've been advised by multiple doctors and a jaw surgeons here, that I'm best off looking into surgery in the US, with a specific few orthognathic jaw surgeons who are trained specifically in airway and TMJ issues, and that the expertise does not exist here in Canada yet. I have a few more consultations with other surgeons here, but I am not feeling optimistic that they can help me. They cost $400-500 per consult here, plus $15,000 for the jaw surgery, and $15,000 for the braces required. Yes, jaw surgery is not free, even here in Canada and even if it is required for medical reasons. Even if I find a surgeon who is able to perform the surgery here, I'm looking at a minimum 2-3

year wait time. I've been advised by the surgeons that I cannot wait that long. I also require at least $10,000-15,000 of gum and bone grafting, due to the grinding and damage to my teeth from all these years of not being fixed.

I have consulted with two of the recommended expert jaw surgeons, both in LA, California. Jaw surgery consult with them is $100,000+, not including flight, staying there for 3 weeks to recover, and other costs. My parents are looking into taking out a loan for this, however they've been supporting me for 15 years and many of the wrong treatments I've tried, plus they support my sister who also has chronic, debilitating health issues. I feel both so incredibly lucky that I have two incredible parents that would do anything to try and help me and sick to my stomach and heart broken for them to be trying to pay for this.

It's sad when you see how much your health and life cost in a number.

A Day in My Life

A typical day in my life currently and for so many years: I drag myself out of bed, feeling as though I haven't slept (I haven't), like I have the worst hangover you can ever imagine and as though I've been run over by a truck. I'm incredibly dizzy and feel very drugged, drag myself to the kitchen and start chugging water and electrolytes. I've developed severe dysautonomia and POTS as well, where my body cannot maintain adequate blood pressure, body temp, due to the UARS. I've lived on meds for 9 years now, just to boost my blood pressure a little bit.

I spend the next few hours taking meds, supplements, and drinking tons trying to feel a little bit better and rehydrate myself after another horrible night. I'm losing the ability to properly digest food and can hardly eat anything these days. I also can barely chew due to the pain in my jaw joints, which are also deteriorating.

I lie down most of the day. If I am lucky, every few days I am able to go for a short walk and be upright for a hour or so. Every once in a while, maybe once every few months, I am able to go out to something in the evening for short time. I know I will spend several days or sometimes weeks recovering from this. I also hardly eat during the day; I feel so sick (my digestive system has also been screwed up by this and meds). I feel so drugged, I can barely read and I mostly have to lie down all the time or sit. Going to an appt once in a while totally wipes me out.

I also wake up in terrible pain from grinding my teeth all night long, another sign that I cannot breathe. Everything hurts, from my head down to my toes, since my body contorts into all kinds of painful, odd positions trying to breathe. It is awful. It is no quality of life and

has made me very isolated. Worse than losing my body functioning is losing my brain function. My cognitive functioning is so poor, and it keeps getting worse. I cannot remember anything from even a few seconds ago and it is very scary. I cannot read more than a short article and even that is becoming more and more difficult. I cannot retain anything. I also get sick constantly, due to my immune system being so low from lack from sleep. This makes going anywhere also risky. It took me more than 6 months to get back to this baseline after having Covid last year.

I completely understand if you are not able to donate, it is a very difficult time for so many people. Giving me a call, coming to visit, send me a message, are all very much appreciated. It is incredibly lonely and isolating.

As you can imagine, my parents and I have done extensive research over many months and spent a lot of time talking to these experts as well as to others who are going through this too. The prognosis is that this issue will get worse the longer is it not fixed, and my body will continue to break down. I refuse to continue to suffer. I simply cannot do it anymore.

That is just the honest truth.

Much love to you all, big hugs and thank you for reading this.

Christina