MayFamMedicalFund

 7/2026. RECENT UPDATES ARE AT BOTTOM

The short: This fund is to help with the cost of hospital stays, medical bills, out-of-pocket expenses, meds (compounded-not covered), non-medical items for me, hopefully a future trip to Mayo Clinic, and now just helping us stay in our home and keep the lights on now that we are down three incomes and having to share 3 cars between six people.

Update to this- as of 7/26 now my husband is unemployed and they cancelled our insurance. We don’t know that we can swing COBRA and a mortgage and keep the lights on. The panic and feeling of helplessness is real. I legit have to be on home health at home to stay at home and stay alive. I am TPN dependent. (My nutrition comes from a bag infused into an intravenous central line) without it, my electrolytes go off balance, malnourishment quickly sets in, and my body will shut down.

We have faith and know we will come out on the other side stronger, but for now, it is beyond difficult. Please be in prayer! I’ll be over here strumming my Taylor Swift therapy songs and my fav songs of hope and faith.

Son's accident-As many know, this past February our son was in a serious motorcycle accident. (Not his fault.) It is only by God's grace, his stubborn, strong nature, his protective precautions/gear, and a team of amazing doctors that he is still here with us. He has a really long road to recovery. His lengthy hospital stays, my hospital stays, loss of income, and now being down 3 incomes and thee vehicles, we are hurting badly. As a family, we are all emotionally, physically, and financially exhausted.

I can't even list the insane and awful things that keep happening. (to the point we keep joking that our home must be on some kind of cursed land)

I have been in the hospital once a month since Jan 1st.

Between staying with Levi while he was in the hospital, and being in myself, I have only been home a total of 22 days since the 5th of February. That is nuts! (Not even gonna mention the current days I have been home in a row. As soon as I do, I'll be back in. ;)

Quick info on Mayo-My Infections disease Dr and Oncologist want me to go to the main campus of Mayo clinic. They are both convinced this is a genetic mutation and want me evaluated there. This means travel, hotels, food, out of pocket meds, and trying to organize TPN and such while traveling. 

Run Down ON GP-if you want a quick look into what living with Gastroparesis is like, watch the movie, Miracles from Heaven with Jennifer Gardner. Have tissues. The little girl in that movie has slow motility disorder-another name for GP, especially when it involves more than just your stomach like mine. 

LONG STORY, LONG-loml-As many know, in December of 2023 I began getting very ill and spent most of that month hospitalized. I had been battling doctors the two years prior trying to tell them something was wrong-something felt off. I was crying in appointments begging them to dig further. I was exhausted all of the time. I was having GI issues. My joints hurt. The gaslighting was real due to my weight. (Which was partly from frequent steroids for my asthma and suspected C-vid long hauler, possible Mast Cell Disorder..) I had Bells Palsy, Shingles, etc after every bout of C-vid. I had previous diagnoses of Hashimoto's, Pernicious Anemia, Acute Pancreatitis, Auto Immune Hepatitis, etc. 

In February of 2024, I went in the hospital for 2 weeks. I made it home for 24 hours, and returned the next day for the rest of that month. No one could figure out why, but suddenly, I could not eat or drink at all without intense pain and vomiting. My pancreatitis was reoccurring, and my liver issues had returned. I was sent home home with meds and a PICC line and TPN for nutrition due to Mal-nourishment. This was thought to be a very temporary thing that would fix itself. It wasn't. 

Because of all of this, I sadly often miss holidays (xmas), birthdays, anniversaries, and vacations.

Family History: My mother had something called, Eosinophilia Gastroenteritis. She passed from complications, when she was only 43-younger than me. It is very similar to MCAS with Gastroparesis. In fact, she may have had both as well. When our oldest was 16, she too was diagnosed with this after biopsies while in the ICU downtown. Since she too has similar GI issues and has trouble working on a regular basis, we often take on her bills. She is basically a young adult dependent we can't claim. (Another reason for genetic testing.) 

Diagnosis: Here we are in November of 2025, and this is still my life. This coming February it will be two years of living without real meals. Without ever truly sating the hunger pains. Two years of constant pain, lines, infections, allergic reactions, doctors appointments, hospital stays, etc. An allergist finally confirmed I have Mast Cell Activation Syndrome. This is an auto-immunuine disorder. The GI diagnosis was finally determined to be Severe Motility Disorder/AKA Gastroparesis. It wasn't until I found a knowledgable GI in the Houston Medical Center in the summer of 2024, that the test for Gastroparesis was run, and this was figured out. My lower Gi is also slow and is not always absorbing things in my Jejunum/intestines. This is why I am not fed via my J tube yet. In Dec 24, They gave me a g-tube that drains into a bag so that I can drink and eat soft carb things that will drain. 

CURE: There is NO CURE for Gastroparesis or MCAS.

There are different levels of this GI disorder. Some people just have to watch what they eat, others like myself, well, they end up with feeding tubes, and lines, and TPN. It is a horrible, soul sucking disorder. People do go into remission, but doctors can not tell you when or how long remission will happen. 

My husband and kids have had to become nurses, chauffeurs, caregivers, etc. with little warning. They are all handling it so well, and I can't ever convey how much I love and appreciate them-or how guilty I feel every moment. 

I LOVE to cook. I love to eat too...lol

This has been a really trying couple of years. 

Job Loss: The constant hospital stays finally cost me my job late in the summer of 2025. I had been there 6+years. I understood. I wasn't always meeting metrics. I had been on un-paid medical leave for a while- NO pay. When I came back, that money was such a tremendous blessing, but when I ended up in the hospital 3x within a couple of months, they had to force me to face that fact that I was not able to work enough to keep up. While devastating, I understood. 

Yes, I applied for disability when I was first placed on TPN. I am still waiting... many, many months in.

Please pray the disability will be approved ASAP. 

Hospital Politics: Charging sick people and their families for parking should be illegal- MY husband and kids have spent all sorts of money covering what bills I used to pay. They spend so much time and money on food and parking when I am in the hospital. No one thinks of all of those added expenses when loved ones are sick. -Parking in the medical center is absolute highway robbery when you are visting our staying with a loved one. My kids have paid upwards of $100 for staying with me for 7 days. (it is like $20 for 24hrs.) The cost of food for your loved ones to eat out the entire time they are with you, even hospital food, is totally ludicrous. Even though I can't eat, I try and get the doctors to mark I am on a regular diet, so the person staying with me can order "free food", but they don't always allow this. 

Complications: I have now had Sepsis 4-5 times. The past two times, my central line and my blood both tested positive for Staph. The last hospital stay was a half a day shy of 14days. The infectious disease doctor has informed us that with every line/blood infection, the next one will be worse and more difficult to treat. This last time, I ended up in the ICU in critical condition for a few hours when they lost all vascular access and could not get my potassium and other levels up out of the critically low range. I ended up having a direct line placed in my jugular/neck. It was awful! This was all after a surgeon came bedside and tried to place a clavicle line with no sedation. This has all been so emotionally and physically exhausting, not just for me, but for the entire family.

We hate that we keep having to request help. It is so humiliating and humbling... as most things have been the last couple of years. 

We are human. We still have to live and buy things like clothes, and food, pet food/bills, occasional happy insignificant things. Every time we think we can breathe a little easier, something happens. 

We have cut out so many things. We have canceled cable/TV. We sold my car. (I miss my car) We stopped fostering animals. We cancelled numerous subscriptions and apps. (I used to get book-box subscriptions- I miss it!) We rarely eat out. I rarely leave the house unless it is for a Dr appointment. The only Starbucks I see is when we have an appt downtown, and I snag one from the lobby Starbucks like a good patient award. lol  We are truly trying to cut out all non-necessity items.

Champagne Problems: I have lost 80+lbs. Nothing fits. I have gone from a size 16 to a size 4/6. (I look very different, and I am not complaining about that part.) lol We have tried to hit resale stores and thrift stores for clothing, but sometimes i have had to just hit sales online/apps, as there is no time or energy for in-person shopping. I have a Poshmark closet where I also sell and buy items. (Thankfully, I did keep a few of my favorite things before I gained too) 

I admit, the fam has had to take my phone away when I am heavily medicated to keep me from therapy shopping while under the influence. I say this to be transparent and truthful! My mother did this often, but she had the means to pay the bill.  My husband and I have both sold loved collectibles. I have even snagged hot items to resell for profit, but I am truly bad at this and learned quickly, I am not a good gambler. It is also really hard to pack up and sell items on your own wish list. It is just really difficult and depressing, because emotionally, sometimes you do need a good book or trinket as a pick-me-up.

GUITAR!!!! The one thing that will be the last to go is the guitar my kids got me last Xmas-and any I may get in the future. These are truthfully therapy for me. Learning to play was the most fun, healing thing I have accomplished on this journey. My team guitar right now is the Epiphone J-190 in mint, blue, black, or pink. (I am not really a purple and pink girl, but don't hate them.) Even higher would be the Gibson version of of these.

I don't have anything against the TaylorS guitars on her website representing albums. (Eras and Folklore my favs) One day, we will be okay, and I will be able to invest in a really great full size guitar. I am not too good for used either. ;)

Family is a Blessing! All of our kids have had put off school, apartments, etc. Partly because life has become so expensive. Partly, so they can help here with everything including bills. They all pay for all of their own expenses, rent, bills, and even pitch in with other bills and groceries. We have been truly blessed in the family and friends department. I know it gets old to hear the depressing medical stories and whining. This has ALL been so isolating and discouraging, not only for me, but for the fam. I am not who I was a few years ago. I miss her. I am sure my fam does too.

Bennie the bestest and naughtiest service dog alive makes things so much more bearable. I thank everyone that helped him become a part of our family. 

My Craft and Cooking Groups: I am trying to make things to sell from: crochet items,  Pampered Chef, painting furniture, tumblers, making medical trinkets (like line holders and custom printed medical tape) t-shirts, mugs, etc. I bake items and can jam to sell to local neighbors and friends when I am up for it. The recent problem is that I have been too ill and in the hospital too often to handle doing much at all. There are many days that I can't walk far or stand too long due to pain, weakness, and nausea. "My mind is alive," as Taylor once said-and I want to do all the things! ;) 

What is the Future Plan: The oncologist is running a bone barrow biopsy next year with genetic markers hoping to find some kind of mutation that will help them treat all of this better. He has been wanting this for a while. It can't happen until my infection risk reduces. I also have to be off of all steroids for 6 weeks. Again, they also would really like to see me go to the main Mayo Clinic up north for more opinions. (It has to be the main center due to my diagnoses of MCAS with Gastroparesis and POTS, among others.) This means travel expenses, hotel expenses, food, co-pays, etc. We have explained to the doctors there is no way we can swing that cost right now, but we promised we would start trying to save for it and fundraise for it. 

We know that we are blessed no matter what happens!

We thank everyone from the bottom of our hearts that has helped us during this journey. We know so many are tapped out and unable to contribute. IT IS OKAY! We love and appreciate every single prayer, message, visit, meal, phone call, ride, amazon delivery, grocery gift card, door dash, pizza, card, etc.

note* Everyone that donated to our previous GO FUND ME and are more comfortable with that site, it is still open. Just message me if you want that link. 

#gastroparesiswarrior

#mcasfighter

#Godisgood

#sickswiftie

Please pray and share if you feel inclined. 🫶🏻

The best therapy/service dog on the planet.

"Make the Friendship bracelets..."