Help with medical needs

This is a really hard ask. I am not well, and am not doing well.

I have recently been diagnosed with Mast Cell Activation Syndrome (MCAS).

This past year & a half has been the worst & most dangerous time in my life. I have been left with 3 safe foods for the past year alone, trialing new foods leads to anaphylaxis. Stress leads to anaphylaxis. Environment and intense weather (hot and cold temperatures) cause anaphylaxis as well as severe exhaustion, gastrointestinal pain and upset, debilitating body pain and inflammation. 

The safe foods I have are not even always safe, and leave me with severe gastrointestinal pain & symptoms. 

Prior to my recent symptoms, since my late teens, I have had a chronic and constant vibration that hums and pulsates throughout my body rendering me exhausted, in chronic pain and it fluctuates in severity, leaving me immobile at times.  

There are days I cannot walk, either because of pain, joint issues or malnourishment. 

I haven’t driven a car in two years because I am afraid I will pass out or have a reaction while driving. 

I desperately need help in raising funds to see a credible and knowledgeable Mast Cell Specialist and Dietician to help me manage my symptoms, successfully trial meds to control and lessen my symptoms and reintroduce foods more safely. 

My goal is to see Dr Afrin in New York- he has literally written the book on MCAS. Dr Afrin appointments begins at $7000+ to start to see him for three days. This does not include testing, and most testing will not be covered by my insurance I was recently informed. 

The dietician on staff begins at $500 and with my severe food issues I desperately need a knowledgeable and educated dietician to help me with a real low histamine diet and to better understand how to go about trials new foods. The AIM center is feeling like the best place for me at this time. 

I have been suffering for nearly all my life on and off, and now my 6 year old is showing signs of MCAS. We need help in affording a legitimate specialist who has experience and can help us with this illness and help to diagnose and treat our symptoms. 

Unfortunately the AIM office does not see children under 16. Without a specialist who works with children I am left feeling like I absolutely must get my own diagnoses and needs in order so I can best help my daughter if MCAS is something she is actually suffering from.

~My kiddo at this time is doing better, since we have kept a journal and focused on a slightly limited yet diverse safe food list. I will speak of my own personal needs from this point on. I do want to say if they do have mast cell, I need to have access to quality care so I can help her manage her symptoms. The sooner you treat - the better, and the longer you go without a diagnosis and treatment, well- you’ll get to the point where I am.

I have been chronically ill with obvious symptoms for my entire life and most predominantly in my early 20’s. I have sought and spent a fortune on medical care and diagnoses. I have been dismissed, denied, laughed at, told it was all in my head, told to lose weight, told that I was just anxious- I have been gaslit and I’ve always known there was something that they just didn’t know- yet I still had to pay for that abuse and denial of care. I masked and pushed through my symptoms to pay these doctors and pain specialists to deny me, to laugh and scoff at me, to tell me I’m just anxious. 

I did everything right. I sought doctors who would care and be curious about my symptoms. I was let down time and time again. Medical trauma is a common happening with chronically ill people, particularly women. It’s unacceptable. And now, despite doing every thing right- I need help. I can’t work, my husband has to care for me and our daughter and her homeschooling. 

I am and have been disabled since late spring 2019, my husband has been caring for me and our young child since then. I wouldn't be here without him. (Thank you, Logan- I love you beyond the words I still have.)

After using our savings and going through yet another line of doctors ranging from traditional to functional in the last 2 years, I have finally found one who knows what is wrong with me! This is a small win, and I am so grateful for it- but now that I know, I have a long road ahead of me. I Need a mast cell specialist- I suffer from severe food reactions that include anaphylactic reactions, I have been down to 3 safe foods for the past year, and trialing foods has been largely unsuccessful. I am not well, and I am not doing well. The toll this has taken on my psyche- emotionally, spiritually & physically has left me at the lowest point in my life, and I never thought it could leave me worse than I have felt in the past- having family adds a heartache and heartbreak and fear that expands into the limitless universe.

I have recently lost my main safe foods due to a recipe change. It now includes a rice flour that triggers my Eosinophilic Esophagitis (EOE) as well as anaphylaxis - found this out the hard way. EOE causes constant reflux, gastrointestinal pain, bloat, inflammation, dysphasia, choking on food and drink and narrowing of my esophagus leaving me unable to eat solid foods at times, and even drinking water can be too difficult and painful and I just can’t do it.

I need help in a desperate way to acquire some funding so I can purchase the last cases of the original recipe of SPROUTED OAT O’S CEREAL from the brand: ONE DEGREE ORGANICS. There is a seller who is helping me by tracking down any and all remaining cases. I also obviously have to begin trialing gluten-free flours that are found in my safe cereal so that I can make my own. With mast cell, along with my corn allergy (including all corn-derivatives, like: dextrose, white vinegar, ascorbic acid, or any of the other 100+ names), I have to trial each flour individually prior to just making a recipe or else I risk anaphylaxis or other sever gastrointestinal discomfort, pain and inflammation. If I do this, then I won’t risk having an initial reaction on top of potential reaction to any flour typer I have, and it is vital I limit my risk of anaphylaxis, particularly during Covid-19.

As of now, April, 2022 I believe I have purchased all of the original ingredient one degree cereal. I have enough to get me through half the summer, but I must find care and safe meds so I can get my mcas into remission. Mcas is forever, but with the help from a specialist I can manage it and go into remission and not suffer so severely. 

I must seek a mast cell specialist and my ideal is Dr. Afrin and his dietician in New York, due to variables and expectations and his firsthand knowledge of this illness. I have tried three dieticians and all have failed at understanding low histamine diets, constantly suggesting things most people with MCAS simply cannot tolerate and honestly I need to work with someone who knows what they are talking about when it comes to my needs with MCAS and my other health issues and allergies.

I am the one who suffers with their mistakes, and I no longer have the energy, health ability or mindset to fail due to their lack of knowledge and experience.

This is a desperate time for me and I need quality and knowledgeable care.

The distance between Dr. Afrin and our hometown is and feels extraordinary. The danger for this journey is high.

I cannot stay at hotels for a few reasons-

I react to perfumes, cleaning agents, laundry air fresheners.

I cannot be exposed to others who potentially could have covid, flu, or any other viral infection at this time as I cannot tolerate meds, I am in such a reactive state.

We are in a temporary rental thanks to a family member who is willing to help us out for this winter, but we must be out in May. 

Limiting my exposures to elements that make me have life threatening reactions is a high need and our personal goals include the acquisition of  a small camper to live part time in and safely travel/stay in cities while seeing specialists (dr Afrin is in New York and it’s a three day appointment)

My body cannot get better while it is fighting itself- acting like I am suddenly allergic to anything and everything. Even my safe foods make me react at times.

This is such a dismal, confusing and disturbing and endless illness.

I need help figuring out how to manage my symptoms, what other illnesses I have so that I may treat them and lessen my reactive state and daily pain and inflammation at a constant 7/10 or higher.

There are some days I cannot even walk, or if i can, it is with a limp because of my hip, knee, and/or ankle joints.

To see Dr. Afrin for a three day appointment is $5000 to begin with. Extra testing and labs are more. 

The dietician on staff is $500 to begin with.

I am awaiting disability (and expect to be denied as this is typical for anyone and everyone when they apply, as well as there being a backlog of work in all government departments and disability is one of them. This is the harsh reality of those seeking disability and I have seen my own father suffer through this process. It takes years and is a lot of work for people and families that are already struggling so much & I cannot afford to wait, health wise.)

Right now we have no income and are selling everything we have that is not an absolute necessity to make ends meet, to begin saving for medical care and a very needed home on wheels - whether that is a camper or a tiny home.

I know this is a lot to read and absorb, it is a lot to feel and cope with and I just cannot push through these symptoms any more.

I cannot leave my daughter without her mother.

I cannot risk leaving her in a world of medicine that typically does not understand people like us.

It is our plan to take her to the same doctor who diagnosed me locally, but they are not a specialist in the field and we have to pay out of pocket. I would much prefer to find her a specialist for children who knows mcas. It is our hope the doctor can help direct us down the right path per our child’s’ needs as her recent egd shows nothing and yet she is choking on food and water and having severe gastrointestinal issues. 

These appointments range from $200-400 a visit depending on length of time and we cannot afford that until we sell more of our bigger belongings. I am unable to help my husband and he has been caring for both of us since before the shut down and my symptoms have progressed since then.

Any help is so appreciated and anything donated for my needs will only go towards specialist costs for myself and to apply towards the remaining cases of my safe foods. This is an absolutely frightening time and I feel like the world is on fire around me and I am stuck in this suspended animation, unable to help others or help myself. I thank you for any good thoughts, wishes for my remission and when possible, monetary support.