Rebuild Rachel Carey's 'runway' as she recovers

Hi! My name is Rachel Carey, and I’m asking for help with rebuilding my financial ‘runway’ as I recover from a long-term illness and recent divorce.

I've been dealing with an auto-immune disorder called Mast Cell Activation Syndrome (MCAS), and I'm not yet well enough to support myself.

I'm asking for help because the 'runway' money from my divorce settlement was expected to last 2 years. However, many unexpected & large expenses have cut my 'runway' in half within only 3 months (details to follow).

Any money received will be used to help me pay rent, medical and living expenses.

My goal is to stay in San Diego and continue working with my wonderful VA doctors (we're finally making some progress!).

I also hope to have time to rebuild my reiki practice, and/or to find other employment until that happens. I love doing it and helping others. I was able to support myself doing sessions on donation, so money wouldn’t be a barrier for anyone.

Basically, your support will help me recover physically, mentally, emotionally, & financially from a really rough 6 years.

SUMMARY:

In case you only want the highlights…

● I’ve been dealing with an autoimmune issue called Mast Cell Activation Syndrome (MCAS) since December, 2017.

● My husband asked for a divorce on July 31, 2023. This wasn't a high-finance situation, especially since the MCAS has impacted my ability to work for the past few years.

So, we agreed to an unconventional settlement. He gave me all of our financial assets in exchange for not paying alimony. I got a 'runway', and he saved quite a lot of $$ in the long term. At the time of the agreement, I had approximately $29,000 USD.

● Because I found an amazing & affordable living situation, the settlement would allow me 1.5-2 years to heal, recover and move forward.

● I anticipated moving and certain other expenses with the divorce, but several unexpected things have reduced my 'runway' by more than half within only 3 months. Here are just a few examples:

THE BIGGIES:

- Rent ($2100), utilities ($237), & account cancellation fees ($125) for October, as ex rebuilt his bank account – expected, but still a ‘hit’: $2462

- Rent on 2 apartments in November (partial for old place & rent for new): $1300

- Penalty for breaking lease at old place by 1 month (refused to pro-rate): $2900

- Damages done by person who used to rent my room in 2019. They did over $11k in damages to a security gate. Landlord paid for repairs while awaiting insurance settlements.

The case was finally resolved in October, 2023. That's when the old roommate skipped town to avoid paying the balance still due to the landlord.

My roommate had been making payments, but they had only just returned to work after recovering from a significant injury.

I learned all of this just before Christmas because the landlord was demanding full balance by 12/31/23, or they'd initiate eviction. My new roommate couldn’t pay it off. So, I confirmed everything & did a contract to loan my new roommate the money from my 'runway'.

Then, I paid the balance due for repairs to the landlord: Nearly $3700

THE MEDIUMS & SMALLS (that added up quickly):

- Moving ($475) + Mover tips ($140): $475 - 615

- Security deposit for new place: $500

- Security deposit deduction at old place for cleaning (despite being very clean & that they would be renovating when I/we left after 10 years): $280

- Fee for large sofa & area rug to be taken to dump due to fleas (Forgot to add that I dealt with fleas from Jul – Nov, including 3 exterminator visits. As a friend said, the infestation was almost ‘biblical’): $450 + $100 in tips to movers

- Laundry Money. I was highly symptomatic due to pushing really hard with fleas, purging belongings, packing, & moving out/in. It created a storm in which I had huge mcas flares 2-3 times/day (skin prickling, stabbing & burning sensations, nausea, fever, brain fog, …).

Medicines + showering + changing clothes helped calm the flares a bit – but that meant changing clothes 2+ times/day. I also needed to wash all clothing, bedding, and drapery that I brought with me: $250 for Oct - Dec

- Table Top Water Distiller. I had a reverse osmosis system, but in a fit of brain fog, I completely messed up the measurements. It didn’t fit under any sinks in the new apartment, so I bought the distiller.

Reducing the variables in anything I consume helps manage reactions. I once reacted to a medicine that was just a concentrate + water. The difference between the 2 vials was that one said ‘water’ and the other said ‘distilled water’: $375

- Gas for multiple 70-mile round trips between old and new apartments during move process, approximately $35-40 per trip: $123

- New vacuum filters (after Flea-mageddon – I tried diatomaceous earth, which kinda ruined me & the vacuum filters): $45

● As I mentioned, rebuilding this ‘runway’ / nest egg will allow me to continue working with my amazing VA & Community Care doctors. It’s taken 6 years to finally see some progress, and it feels like my path (for now) is to continue.

It will also give me time to rebuild my reiki practice and/or find other employment, now that I’m on my own. I was making $35-45k per year with reiki before the illness.

I’m already working with a VA vocational rehabilitation coordinator to help me speed up the reboot process and to also figure out another source of income while that happens.

Any assistance is greatly appreciated, whether it’s financial, and/or sending best wishes, prayers, good vibes, etc.

DETAILS:

If you’re interested in the longer story…

I was pretty healthy until a wildfire happened near our home in December, 2017. The smoke was so thick it could be seen via satellite for 2 days. Even after it was put out, there were high winds blowing lots of ash and debris.

I had a cold at the time that suddenly got much, much worse. I spent New Years Day of 2018 in the ER due to trouble breathing, despite using an inhaler that had been prescribed to help my symptoms since the fire.

The journey to diagnosis took awhile. It wasn’t until early 2019 that I received a differential diagnosis for Mast Cell Activation Syndrome (MCAS) based upon my being helped by mast cell suppressing medications (rather than via labwork).

Mast cells are white blood cells that can release hundreds of substances – all of which cause inflammation. These substances work like a car’s airbags in an accident. The mast cells can also tell other immune cells to release their airbags, lock up the seatbelt, call 911, …

When everything’s working properly, all that is life-saving. When it’s not, it’s like having the life-saving measures activate because you drove over a speed bump or a pot hole.

In my case, the reaction triggers are things that I never had issues with prior to 2017:

- Foods and beverages (30+ items all tested negative as allergies)

- Air quality changes (pollution, dryness, …)

- External temperature changes (especially heat, starting around 74°, with reactions becoming more intense and symptoms domino-ing as temp rises)

- Internal temperature changes (from physical activity, fever, …)

- Mental and/or physical exertion

- Exposure to dust, dust mites, animal dander, pollen (these are actually allergies for me, but the ‘normal’ allergic response is significantly heightened by the mcas)

The twist is that the triggers change daily, sometimes many times per day. That means that what triggers a reaction one day may not trigger it the next. As one of my doctors explained, the reactions have less to do with the specific trigger(s), and more to do with how out of whack my mast cells are at any given moment.

Also, the reactivity seems to depend upon many other factors that medical science has yet to understand.

All that science aside, I think of my mast cells as a middle school orchestra – some days, they nail their songs; other days, not so much; and some days, pure chaos.

It may not make sense, but the chaos is actually freeing. I don’t have a long list of things I can’t, drink, or do ever again. I just have to accept that I’m playing roulette every time I ingest or do anything.

It took a little while, but I’ve mostly made peace with that gamble, especially since most of the reactions are debilitating but not life threatening.

It’s different for everyone, but here are some of my more challenging symptoms, as the inflammation causes degrees/forms of…

- Cognitive dysfunction (brain fog, memory & communication issues, and more)

- Neurological dysfunction (balance, coordination, fine motor skills, …)

- Near-constant, intense fatigue

- Periods of weakness (not fatigue - like when you’re sick with the flu, try to get out of bed, and your body says, “NOPE! Sit or lay down NOW!” Except it can happen when I’m emptying dishwasher, walking to the bathroom, standing in line, …)

- Skin reaction (flushing, prickling, itching, stabbing, sunburn-like achiness, …)

- Oral inflammation (gums/cheeks/tongue swelling, pain, blisters, blood blisters, …)

- GI issues (pain, bloating, nausea, digestive & intestinal dysfunction (including eosinophilic esophagitis – spasming & vomiting caused by eosinophils being directed by mast cells to release their inflammatory substances), …)

—Temperature reactivity (body has trouble regulating temperature + experience skin, gi, respiratory, fever and other symptoms that start around 74 degrees & worsen, or when internal temp goes over 98 (I’m usually at 96.7).

All that means that I tire easily, need a lot more rest than most people, and play roulette multiple times every day.

Also, the brain inflammation was so bad in 2022 that I struggled with severe memory issues, understanding things that I heard or read, & forming or communicating thoughts. I finally had neuro-cognitive testing to see if there were other possible causes for the dysfunction, like dementia (Negative!!).

There used to be a degree of cause-and-effect with reactions. However, as the illness has progressed, it’s gotten much more complicated and volatile.

For example, I recently tried a liquid supplement that a friend had recommended. Due to its ingredients, I suspected I would have a reaction. So, we agreed I would put 1 drop from a small eye-dropper into a 32 oz. bottle of water as an experiment.

After 2 sips, I almost instantly experienced swelling & blistering of my tongue, gums and cheeks; throat irritation, swelling & laryngitis; increased chest pressure and coughing; fever; nausea; dizziness; weakness; brain fog, and more.

I was astounded and a bit alarmed (so was my pulmonologist - & he’s not an alarmist). He said I was lucky to only experience mild anaphylaxis which was managed by my medications & should have gone to the ER for monitoring.

Yes, I ‘knew better’ than to do it, on many levels. But I’d never experienced a reaction that was so intense with such a tiny stimulus/trigger. I also realized I was feeling a little better than I had in months, but not well enough to experiment. Lesson learned!!

That was 2 weeks ago, and I’m still recovering. As part of that process, I tend to only be able to eat non-nutritional foods, like white rice, white potatoes, and air-popped popcorn. I also rely heavily on many supplements that I’m fortunate to tolerate pretty well (most of the time).

But those supplements are expensive, and I’m having to cut back on them – which has started to create both nutritional and functional challenges.

Medically, managing the symptoms is more of an art than a science (as one of my other doctors explained).

We’ve known about mast cells for almost 100 years, and it was assumed they just released histamines for allergic reactions. In the past few years, new research is showing that they release more than 2,000 substances, & most (all?) are inflammatory.

We can currently test for 8-10 of those substances. Of those tests, only 2 tend to be accurate because the conditions for handling the samples for the other tests are so stringent that it takes mere seconds to ruin a sample.

So, I’m currently on a cocktail of 16 different medications – most related to blocking &/or inhibiting mast cells & cells that are influenced by mast cells (like leukocytes & eosinophils). I take most of those medicines multiple times per day. In addition, I have 2 biologic medicines that I inject weekly.

I’m very lucky to only pay a small fraction of the cost for those medicines, thanks to the VA. However, it still costs an average of $160 per month, depending upon when the refills happen.

As for my prognosis, I’ve lost track of how many times I’ve been told that there’s nothing more that can be done for me. Yet, doors continue to open. It sometimes takes months (or years), but they open.

It’s hard to gauge the recent progress because it’s subjective, but I was put on a new combination of medicines in January, 2023 that started to produce results in July.

I feel like I’ve gone from maybe 10% functionality to 50% - in the sense that I’m able to do a bit more, but I’m still highly unstable. I regularly have many huge flares and setbacks. They also re-doubled a medicine that helps reduce brain inflammation - more brain cells are always a plus!! It’s amazing progress!!

Even so, my husband asked for a divorce on July 31, 2023. It’s an over-simplification, but it was mostly because of how the chaotic, debilitating nature of this illness was impacting him, his mental health,& his quality of life.

If you’ve ever had or known someone dealing with a long-term, complex illness, you probably know that it can be as hard on loved ones as it is on those who are ill. I also realize that we both made mistakes & failed one another in various ways - all of which impacted our relationship over time. None of that makes divorcing any easier, but I get why he needed to leave.

Moving forward... I’m so incredibly grateful that I was able to find a great living situation. Neither of us could afford to stay at our old place alone, and it wasn’t conducive to my having a roommate. A friend helped me find an amazing and affordable living situation with a wonderful roommate!

I’m still recovering from pushing myself so hard while dealing with the fleas, & then the move (and now, the supplement experiment).

Even though I had a small village of incredible friends, friends of friends, strangers & other angels who worked miracles when they could, I did most of the purging, packing, & unpacking alone to go from a 2br/1.5ba home to a 10x12 room.

I’ve had many days where I couldn’t do anything but lay in bed. Especially since the mcas reactivity is currently so volatile.

For now, I'm doing my best to go back to basics: LOTS of rest, small amounts & types of foods, and other measures.

Like many people, I’ve dealt with lots of challenges in my life. It may sound gooby, but I feel like my past prepared me for this illness. Then, the illness prepared me for the divorce and this new chapter of my life.

I’ve come to think of these challenges like hurricanes. My goal each day is to stay in the eye of those storms, where it’s calm and peaceful. I also try to move with them as they shift and change.

I’m not perfect at this – at all. But I’m getting lots of practice in applying all the tools in my toolbox with greater consistency and frequency. My center of gravity tends to be optimism, humor, and peace, but I absolutely have days where I rage like Godzilla or drown in an ocean of tears...

All that said, I realize that countless others are dealing with far more and far worse. So, if it feels right to help others, please do.

If you’re up for it, your good wishes, prayers, juju, etc., are also gratefully received.

Also, if you’ve made it to the end of this novelette – I wish I had a prize for you!!

As it is, please consider yourself hugged and thanked for taking the time to check in – and for all that you’re doing to help me and/or anyone else <3