Help Jennifer With Needed Caretaking & Medical Care

Hi! I’m Jennifer. After becoming disabled at age 32 from a hysterectomy followed by mold illness causing severe Mast Cell Activation Syndrome* and Postural Orthostatic Tachycardia Syndrome**, I have fought for almost ten years to try to get back at least a shadow of a healthy life. During the last ten years, we have drained our bank accounts, lost our family home to mold, replaced all of our possessions that we could afford to (still have some left we haven't been able to get), and fought for me to be on disability. My husband, Gil, has been my main caretaker on top of working full time during these years. He currently works at a hardware store that has been great to him about taking off for my appointments as we don't have anyone else who can safely drive me to them. I am sensitive to even pediatric doses of most medicines, and have major reactions to scents and other environmental stimuli. I have Ehler Danlos Syndrome*** which affects every part of my body and causes me to need regular Pt. I have petitioned with Medicare to get scent free medical rides for over a year now and am still being denied the necessary accomodation. MCAS is severe for me to the point that my diet has been limited to only four foods for five years, even with working with a MCAS dietician here in Louisiana. This has led to me being severely deficient in vitamin C for at least a year, possibly longer. I've been fighting for six months now to get a simple vitamin C infusion through our hospital systems here and haven't gotten one yet. Over the last three years since having Delta Covid, my conditions seemed to have tripled in severity while making strides in some small areas. At this point, we owe around $25k in medical bills because Gil has also had some major unexpected health issues of his own with complications. I could likely improve if I had consistent access to scent free medical rides for regular in person PT and a regular caretaker a few days a week. Medicare won't cover this for me and Medicaid dropped me earlier this year because their coverage levels changed. There's an agency here called Always Best Care that takes care of a friend of mine in similar condition. They require that you give their caretakers specific amount of hours to be hired. It will be around $3k a month for me to use them. We are barely making it and most of the medical bills are being paid only when we can afford them at tiny amounts per month. It's getting harder for Gil to be able to take off of work for my appointments and we cannot afford for him to lose his job. I have included a letter in an update showing the most recent correspondence from Medicare about their inaccessible medical ride services.

Because of this, I'm first asking for $10,000 for three months of caretaker pay. I have delayed asking this for so long, but with my body's current life-threatened state, it is imperative things turn around. This would help me greatly to strengthen my body with an EDS specialized PT provider in Central. It also would give me possible access to regular vitamin c infusions if they become available. It would help me to be able to get outside for regular walks in the morning to get needed vitamin D (that I also am deficient in and yet to find an oral supplement I don't react to) when UV rays aren't as dangerous.

I'm secondly asking for another $10,000 because there is a functional medicine doctor at Sanctuary Functional Medicine in Tennesee that I have been a good candidate to see for four years now. He is likely my best hope at getting these conditions better and has helped a few other medical zebras I know personally get their lives back. My main doctors here want me to see him, but his office doesn't take insurance. For a year of treatment, plus lab and supplement and travel fees, we are looking at around $10k conservatively out of pocket. I have no idea how or when we will be able to afford this on our own. There are so many more details I could share but I don't want to overwhelm anyone with too much information.

If you've taken the time to read this, and are considering helping me as you're able, that alone is appreciated with all that is within me. I believe God can restore what damage has been done from MCAS, or help me thrive through the damage, with the help of others as He uses them to provide, or through simply miraculous means. I don't see how He can or will do it, but I know He can choose to. I'll continue to update regularly as I'm physically able.

Onward, Upward, and with hope,

Jennifer Traigle

*Mast Cell Activation Syndrome is when the body decides to inappropriately overreact to normal stimuli (from scents to foods to almost anything that doesn't bother 70% of the population) and it does so in the form of allergic reactions ranging from mild to life threatening. The symptom often changes what it reacts to depending on any recent exposures, how many recent exposures, and many other external factors such as stress levels, environement, environmental changes, and more. It's unpredictable, scary, and hard to treat. It's also hard to diagnose as it doesn't usually show on common allergy lab work. It took me going through 7 allergists to find the one I have now who is appropriately advocating and handling my care well. For me personally, it began as reactions to foods I had eaten fine my entire life. It then snowballed into everything from the soap I used to basic cleaning scents and more. I have had to remain mostly isolated for the last six years because of the use of scents in everything from people's laundry detergents to restrooms and more. I have only tolerated four foods for the last six years in spite of working with two mcas dieticians. I'm currently on a regiment of three antihistamines, a mast cell stabilizer, and steroids daily to stop basic reactions just to life. I cannot start anything new at more than a minimal fourth dosage and even then my body reacts. I only tolerate one brand of water. I have to buy everything new and only in specific materials from specific companies, for things from clothing to furniture and specific soaps and cleaning materials online. I have to wear nasal filters and masks to go anywhere and that doesn't fully block certain things from causing reactions. As you can imagine, this is very hard emotionally and financially. Even most medical facilities and churches refuse to be accessible. I have been unable to find fragrance free riding to keep up with my many needed medical appts to improve. The long term steroids I'm on for this are contradicted with Ehler Danlos Syndrome, so if we can get this under control, I could hopefully get off of those. The possible treatment is an injection called Xolair, but we are having to wait until July to do it because I have to have Gil home with me for at least three days and that's the soonest he can take that time off of work. IF I had a caretaker, I could access this treatment sooner. You can learn more at tmsforacure.org

** Postural Orthostatic Tachycardia Syndrome

This is a condition that affects the entire autonomic nervous system. Your autonomic nervous system affects everything from blood pressure regulation to absorption of nutrients to digestion to temperature regulation and more. In POTS, the ANS glitches and causes major life threatening symptoms like fainting, loss of bowel and bladder control, air hunger, and more. These can all be triggered by environment, environmental changes, stress, hormones, and more. I deal with the hyperadrenergic type. The form of treatment we found to work best for me so far is regular saline infusions one to three times a week for six years and counting. I currently need a PORT to help with infusion access but am waiting on angiogram to get done next month then to schedule around Gil's work. Having a caretaker would help me to get this done as well. You can learn more at dysautonomiainternational.org

***Ehler Danlos Syndrome

basically, my connective tissue is crappy and it makes up everything in the body. MCAS, POTS, and EDS are a common trifecta of comorbidities (conditions that usually appear in the same patient). I have been diagnosed with hypermobility EDS with a possible genetic predisposition to aneurysms. (scary!) MCAS releases a lot of blood thinning properties such as heparin, which makes the situation worse. Being on long term steroids can eat up my collagen as well. Having access to regular PT and care for other needed things would benefit me greatly. You can learn more at ehler-danlos.com

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