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Hi family & friends! I am coming to you today with a serious conversation and being in one of the most vulnerable positions I’ve ever been in. This is a serious, heavy update. More-so than any before.
TW/CW: Mental Health, Terminal Illness, Pre-Cancer subjects, Surgery, Palliative Care/Hospice, Death
It’s been a very dark 6 months mentally trying to process and work through all of these rapid changes in health I’ve had. It has been especially rough as my body deteriorates, my new daily pain increases to 12/10, and I go back to using more and more supportive care, medical equipment, and no longer drive. Someone (either Kasey or Daniel) is with me about 24/7 at this point. Most, if not all, of my doctors, doctors while I was inpatient at Johns Hopkins, Meritus recently, etc., have all started having (and have had) the conversations with me now about “realistic expectations”, “there might not be an answer and that could be it - that there is no reason or answer”, “there’s nothing in a textbook that fits everything you have going on”, “we should focus on quality of life”. So with that all being said, the updates are below!
Health Updates (short versions):
- I’m now Terminal. I’m in Left Sided Heart Failure Stage B and the JH Cardiomyopathy Heart Failure Specialists can’t figure out why, they’ve only ruled things out. I’ve med failed almost all the meds already (or they can’t give them to me bc it interacts with my POTS) so no treatment is currently being pursued. It seems like one of my abnormal genes may be tied to it but they aren’t sure.
- I have Squamous Cell Cervical Pre-Cancer, awaiting a surgical consult at JH for a Total Hysterectomy after having to reschedule it from the original surgery date in November with my GYN locally declaring it medically necessary from the LHF alone.
- My Behçet's remains uncontrolled, med failure status. No treatment other than symptomatic.
- My Gastroparesis is progressing, as well as my GERD. I currently (and for the last 3 weeks) have had GI bleeding off/on consistently getting worse. I saw GI Tuesday and I need an Urgent Endoscopy to identify the source of the internal bleeding but I have to await Cardiac Clearance. I’m a bleeding ticking time bomb.
- I was evaluated at JH a week ago in-patient on my nutrition status and I meet ASPEN criteria for diagnosed Severe Malnutrition “Chronic-Disease Related”. I have mild to moderate muscle wasting and moderate to severe fat wasting. TPN feeds are the topic of discussion currently. I was supposed to see the Nutrition Clinic at JH (however I’ve been trying to find a new nutritionist/dietician that would see me with my gastroparesis for a few years now) and it’s $75/15 minutes or $300 a visit out of pocket completely because my insurance will not cover my visit for Malnutrition. (I know it doesn’t make sense, I don’t get it either).
- I have tooth resorption (my teeth are now autoimmune attacking themselves) and in order to fix that I need root canals & crowns at minimum with a $225 out of pocket copay I’m required to pay in order to receive services. I also chipped a tooth just today and was sent home with it broken until I can get cardiac clearance.
- I had my hearing re-checked a week ago and I now have significant hearing loss (worse in right ear) and moderate (worsening) Tinnitus. I now need hearing aids. There is a potential I will have to pay completely out of pocket for them, or in a better case I might only have to pay a copay. Either way, there will be some cost on my end, I’m just awaiting to find out how much.
- 6 months ago I accidentally slammed the side of my foot into my living room ottoman and thought I broke my toe. I went to urgent care then and they told me it wasn’t broken and to tape it for two weeks. I saw a Podiatrist last week and got new X-Rays. My right pinky toe is broken (it looks like an ice cream scoop taken out of my bone) and it’s also broken below my joint into my foot with a !!floating!! piece of bone next to it. I received a steroid injection into my joint and I’m now in a splint and air cast for an undetermined length of time - trying to avoid surgery if we can.
- I have a sleep study coming up in January at JH to evaluate for moderate to severe sleep apnea and see if anything else is going on.
- I’ve been having seizure like activity that seems like focal or absent seizures. I’m under investigation currently and I see a Neurologist that specializes in seizures locally until I can get into JH Seizure Clinic.
- Finally, multiple doctors and myself have made the decision to bring in Palliative Care and Home Nursing. If I end up needing hospice, I will transition through them into hospice care. Currently my Palliative Care treatment is set up to help control my pain better, be monitored in-home by a nursing team, and to make me more comfortable while I face down these new terrifying circumstances.
Work & Financial & Other Miscellaneous Updates (short versions):
- I had to stop working completely and I am unable to work anymore. I have used all of my savings I had to float myself waiting on TDAP (temporary disability) which still has not come through yet. This means all of my bills are going unpaid, including a storage unit and soon to be my phone.
- I can’t afford half of my pain medicines because only some are covered by my insurance and the rest is PRESCRIBED Medical Marijuana which is an out of pocket cost, but directly impacts my ability to function and stay out of the hospital.
- I hired a disability lawyer who believes I qualify for the Social Security Compassionate Care Program, so we are pursuing that due to my condition.
- I had to re-do my Advance Directive for Mental Health, my Living Will, and my Last Will & Testament. I’d like to file these with the court, however I need to pay the court fees to file them with the Frederick County Courthouse.
- I’m now having to pay for care and seek out of state treatment because providers I need to see are getting more and more sub-specialty (like a Cardiac Geneticist, Neuro-GI, etc). In addition to Boost Very High Calorie food supplements being my main source of nutrition and the high cost to maintain just that. Gas is obviously one of the highest expenses on a regular basis due to having on average 4 appointments a week in-person (sometimes more) across different parts of Maryland and DC.
- The expenses of going to JH on a weekly to twice a week basis currently and the last few months have eaten a couple hundred dollars (over $300) in gas, parking fees, and food (try $20/meal @ JH ).
- I have a bald tire and a brake fluid leak I need to fix on my vehicle. This is the only vehicle we have and does all my transportation.
- I have an urgent need of $225 for me to be able to get my root canals done to prevent nerve death and infection. One tooth is suspected to have nerve death already and the inflammation is worsening.
- I desperately need to see the Nutritionist at JH, I really can’t wait to get in anywhere else since right now there’s no place to refer me to. That is $300 for the first visit and $75/15 minutes after that.
- I do not know the copay of my hearing aids or the entire cost I’ll be responsible for but I’ve been told $1200-4k depending on what my insurance *will* cover.
- I’m in serious debt already from all of the extra expenses, but currently there isn’t anything I can do to stop that from declining further.
- I also am going through a Divorce (as most of you know) but the fees associated with that (even splitting them) I can’t afford currently.
- I’ve been trying to pre-plan my end of life odds and ends as much as possible, but there isn’t any money to even think to put here. If you know of any grants/scholarships/programs for these things that would be super helpful!
All of this to say, I am getting creative for income!! I’ll be making a post soon with a bunch of housewares, office furniture and supplies for sale, along with a bunch of clothes and shoes (mostly all brand new!). If you are looking for anything for a gift or for yourself or if you’re starting out and need something for a reasonable price (or know someone who is) - please feel free to message me!
I am also starting a new GoFundMe since this is an entirely new situation I’m in now and I’m drowning. I need help from every and any angle I can find it!
If you’d rather donate directly so no fees are taken out, please Ven-mo me!
@ChloeTaylor715
I will also link an Amazon Wishlist as another way to help if you’d like
More than anything, I’m looking for support. Community support, friend support. I have very limited family left (and some that I’ve had to cut out due to the way they’ve reacted to some of this news) so I’m very isolated currently. Sending me a message to chat, writing me a letter, or wanting to meet up for a hot chocolate, whatever it may be - I’m asking for help and support now more than ever. I’m focusing on quality of life while I’m still able to do so and would love to just be present for however long I have left.
With all love,
Chloe