Living & Medical Expenses for Disabled Seahorse Dad & Family
Update: September 19th, 2024
Catherine had another PT session today (9/19/2024.)
1. Session Notes: Catherine arrived in significantly elevated pain and did not feel she could tolerate traction or exercises, trialed e stim.
2. Subjective: She is sore today. This morning pain is centered in her neck, high and she can't sit or lay on her back. She has a follow up after physical therapy ends to evaluate for return to work.
3. Impairments: core weakness, decreased range of motion, decreased strength, impaired ADLs, pain, and joint hypermobility
4. Specific Comorbidities: EDS, Myasthenia Gravis, insomnia/narcolepsy, tremors
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Monthly Review in TLDR:
1. Our Car Yearly Registration is due: Really we should've seen this coming. Maybe this year we can add it to our yearly calender reminders. BUT. We didn't. It got us out of the blue. And it's gonna cost us $85 and we need to pay by 9/30/2024 to keep driving legally.
2. Extermination services: We called care management. We've reached out. They were supposed to call us. Idk. We have roaches and we don't want them.
3. We still have our insurances providing transportation to and from select appointments. This isn't always reliable though.
Catherine is in the process of applying as my caretaker to attempt earn benefits. All paperwork has been sent, filed, and signed. Now we wait.
4. Phones and Internet have no eligible programs right now, so are still paying OOP for those.
5. All of my medications except for my migraine medication, asthma medication, and my seizure medication are now reduced to a flat $4 USD copay. My Migraine medication is 1000 a month and my seizure meds are about 500 a month.
6. We are once again out of the 500$ seizure medication.
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Monthly Expenses
Energy, Internet, Phones, Gas (Car), Food, Copays on Appointments, Copays on Meds, OOP on Meds, Car Insurance (state requirement. It's Illegal to not own/pay for insurance.), Mortgage, Various Loans and Credit lines with our mortgage attached from where we tried to save ourselves in desperation, and more daily life costs. All of the costs that go with parenting a 5 year old, caring for 5 dogs (2 of which are service animals), and caring for adult humans that need help.
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Post/Story/Info: https://medium.com/@eternalnyx/mutual-aid-and-crowdsourcing-story-d9107dd70e40
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My GoFundMe: https://gofund.me/ee33c73a
My Ko-Fi: https://ko-fi.com/eternalnyx
My Paypal.me: https://paypal.me/wyntreblossom
My CashApp: $chaoticwyn
Per Request:
My GoFundMe: https://gofund.me/ee33c73a
My Ko-Fi: https://ko-fi.com/eternalnyx
My Paypal.me: https://paypal.me/wyntreblossom
My CashApp: $chaoticwyn
Update: August 15th, 2024
What has happened since I last updated?
FMLA is still going appointment to appointment. Catherine finally got approved for short term disability through the Metlife company mentioned in our last update, and we finally got our first payment from them. It has helped us stay on our feet.
To cover bills and food, we continue all of the things mentioned in previous updates. EBT, Food Banks, Government assistance programs. My health insurance assigned Care Coordinator and a Caseworker continue to work every business to find and send us resources to try, help with energy assistance programs, etc.
We got approved through said programs for pest control for the roach infestation. They are due to contact us on the 10th or 25th to schedule with us and are unable to schedule until 40 days from our approval date have passed. Which was just this past week or so. So we are looking at a month ETA minimum there.
Cat’s medical status is: We had the MRI!!! We did it! Got the MRI and — wuh oh. It’s not the best news. Her pre-existing EDS (Ehlers Danlos Syndrome) seems have to struck yet again. But this time, in increasingly perminent ways.
Degenerative Disc Disease C5-C7. C5–6: There is left paracentral inferior disc extrusion with sequestration. There is mild spinal stenosis. There is no neural foraminal narrowing. C6–7: There is right paracentral disc protrusion with mild spinal stenosis. There is mild right-sided neural foraminal narrowing. No left-sided neural foraminal narrowing.
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My health insurance is currently:
-Reviewing our household income and assists and determining on a month by month basis if we qualify for electric and energy bill coverage. So far, they are covering our energy for us, but as it monthly, it could change.
-Providing extermination services for roaches brought into my home by my ex-husband during a custody swap back during the early days of my escape from DV.
-Providing transportation to and from select appointments. This isn’t always reliable though.
-Catherine is in the process of applying as my caretaker to attempt earn benefits. If someone with a disability already receives Medicaid, their state may allow a family member or friend to become a paid caregiver. Many states call this a consumer-directed personal assistance program. Each state has different requirements and rules. So far it seems she is eligible, as am I. The process is in progress, and we are in the reviewal period and waiting on contact or a decision.
-Phones and Internet have no eligible programs right now, so are still paying OOP for those.
-All of my medications except for my migraine medication, asthma medication, and my seizure medication are now reduced to a flat $4 USD copay. My Migraine medication is 1000 a month and my seizure meds are about 500 a month.
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Monthly Expenses
Energy, Internet, Phones, Gas (Car), Food, Copays on Appointments, Copays on Meds, OOP on Meds, Car Insurance (state requirement. It’s Illegal to not own/pay for insurance.), Mortgage, Various Loans and Credit lines with our mortgage attached from where we tried to save ourselves in desperation, and more daily life costs. All of the costs that go with parenting a 5 year old, caring for 5 dogs (2 of which are service animals), and caring for adult humans that need help.
- So at 17, I met a man who was 20. At this time of my life, my mother was still heavily abusive, pre treatment and I was suicidal and desperate. This man offered me freedom, love, escape, protection. I took it.
- I was groomed, spent years dealing with DV, SA, and the severe traumas. No, you aren't entitled to know my traumas. No. This isn't a call to attack my attacker. I just want peace and progression. I just want forward movement in my life.
- 10 years later I finally escaped my DV situation and my divorce is in progress. I am free. And I am finally living my life as my true self.
- My ex-husband knew I was bisexual, but didn’t know anything about my internal gender struggles or realizations. I really struggled with telling him, and it took me until 5/21/2021 to FINALLY sit him down and tell him that I am non binary.
- It ended in a very large fight with him saying
"There's only two genders, you can't change my mind, you aren't the same person I married. I married a SHE. And now you are a THEY?! Look, I support you. I respect it. I am not going to stop you from being yourself. But I don't want to hear about it or know about it. You are okay with me calling you a she right? ok then to me you ARE a she. just a she. If you wanna talk about anything queer it has to be outside or when I'm not home.”
- During this time, I was a stay at home parent, disabled and chronically ill, battling fibromyalgia, seizures, hemiplegic migraines, tic attacks, adrenal dysfunction, and so much more medically and mentally. There were days I could not leave my bed and had to hold my newborn in my arms and let her breast feed while I moaned in pain on the floor. Life was not pretty.
- I was fully dependent on his income, and had been for a decade. I paid off his court fines to keep him out of jail a few years back with the last of my earned money. After that he told me to stop working and be a stay at home trophy wife and let him earn all the money. It wasn't a choice either.
- There wasn’t anywhere for me to go. My mother offered me and daughter shelter in New Mexico. But he threatened me saying I was kidnapping if I took my daughter anywhere other than his city. I couldn’t leave her behind. So even though he and I were separated, I lived with him and my daughter to keep her safe.
- There was no time to explore my gender. Certainly not safely. I tried. I dipped my toes in the water. But my leash was short and I couldn’t fight it, for the sake of my kid. Thus, I settled into my "new" trophy "wife" role for nearly a year.
- I now live with my fiancé, who is also Trans, and is highly supportive. Sep 27th, 2023 I started testosterone, shaved my head, started packing with a prosthetic, and begun my journey towards top and bottom surgeries!
- My fiancé is an absolute goddess. She took me and my daughter in and is such a beautiful mom to her. She guides me and helps me grow, but leaves me room to fail and learn on my own, without ever letting me truly fall. The difference is night and day and I have never felt happier.
- So I’ve been exploring my gender in my new supportive environment. But it’s difficult financially.
Being trans is expensive. Medical coverage is crap. This isn't a "gimmie hand out i am lazy", this is "if ya feel like being a kind human and like to help people, sure I exist" I do not do this often or lightly. Sometimes I make offhanded poor jokes, but I cope with dark humor. I don't really talk about these things in seriousness. So know that I do this with much trepidation.
We are private people financially. But we know when we are beat and need help.
It's with a heavy financial heart I have to report our needs have become even more emergent. What started as "hey im poor and can't afford extras" is now "my whole house is a stone toss away from homelessness and one of them has no medical care and needs intense imaging and surgeries."
- Cat's (my fiance) been without insurance for a few months and paying out of pocket for medical care. Which. Fine ok. That sucks but everyone else has insurance we can figure it out. We found a program for her E (HRT, she's also trans), and her chronic illness meds so it's been Okay ish. But tight doesn't begin to describe. She has applied for insurance, don't get me wrong. She was on the same plan as us and then poof, no insurance. She's been fighting to get it back and has an open case but until we know more, we have to rely on things like hunger coalitions, food banks, health departments, EBT, ETC.
- The medicine that controls my seizures is 500$ monthly and not covered by anyone's insurance.
- My migraine medication isn't covered anymore, my new state after escaping my DV situation has different insurance rules on my migraine med. So now it isn't covered, but my PCP is fighting to try to find a way to fix it. In the meantime, it's about 1000 out of pocket USD.
- All of our normal meds have 4 dollar copays. And there are 4 adults in this home. All of us chronically ill. Two with seizures. Two can't walk. And we all take like ten meds daily each. 40 meds a month at 4 bucks a pop starts to add up y'all.
We had it. We were struggling but Cat was working full time at minimum wage and we were managing to scrape by paycheck to paycheck. But Catherine has gotten severely injured. She tried to work anyways, as the only able bodied adult in the home, she's our income source and our worker. She drove to work and pushed the pain with OTCs but eventually got sent home because her boss could tell she was NOT ok.
No insurance, we avoided the doctor as long as we could but we finally found a sliding scale Ortho that would see her. The initial visit alone has us 4000 in debt and she needs an MRI and possibly surgery. She's been written out of work on medical leave unpaid for the next ten days. Meanwhile the doctors can't order the MRI until we can pay up front.
- There's also monthly bills. Food. We have a child. Animals. Not just pets, but medical alert dogs as well that need cared for, food, vet bills. When I moved in we had 6 dogs and 3 cats. We now are down to 5 dogs. We have already rehomed so many babies.
- We have signed up for every food pantry in our area. We've been living off of them for months.
- We have food stamps. I have an open disability case waiting on a subpoena.
- The other disabled adults do draw SSI but isn't enough for all of us.
- Cats job was what kept us alive and now she's out of work without pay for God knows how long.
- We need help. I've asked my family behind the scenes, she's asked hers. We've had friends help in small ways here and there. Our village and community is what's kept us alive and we need it now more than even, and it's already so small. As lower class, poor, disabled, minority americans in a red state, our circle is already telling us they are stretched to their own limits. We don't know where else to turn.
- We have filed every government and state paperwork we can trying to get emergency assistance in all of the official ways possible. It isn't enough. It isn't working. We are on the verge of losing not only our healthcare, but our home. We don't know what else to do. We tried the system and it's helping us but is not enough and it's so slow.
I believe in transparency and being an open book so feel free to ask questions, offer resources, aid, whatever you like.
People ask me why my family doesn't do more, ya'll my grandmother hasn't talked to me since I changed my name (From birth first to birth middle) against her wishes. My name meant so much to her that me changing it meant she had to cut me out of her life completely. She hung up on me that day. And if anyone asks her, she will tell you her family alienated her and believes herself to be the victim. As a trans person my family isn't as close knit as many people would think. I have good parents, nice in laws, and my siblings are amazing. But my extended family is either non existent or stopped caring about me a long time ago. My mom and brother? My mom has been living in a tent in the Great Desert Valley for 4 years. Working 80 hours a week as a health care nurse she finally was able to upgrade to a van this year, and that's after all of the wrecks and surgeries (did you know she broke her neck, is diabetic, has had two types of brain cancer, has seizures, and is living homeless city to city for best medical care her insurance can cover because housing costs are just too high for stability. My brother is a single dad with 2 kids, what do you want him to do? Stop thinking supportive family means they can save someone's behind, because a lot of times, they suffer silently watching with a broken heart unable to help until the bitter cold end.
Just because others are lucky enough to have large, rich, well off families, doesn't mean everyone does or can. For a MULTITUDE of reasons.
It shouldn't be this difficult just to survive and have food, water, gas, and medical care. Not in a country where benches are made with slates on purpose so the homeless can't sleep on them. Just imo.
The very next day, while editing this and before I could post it in full properly, more medical hell reigned down upon us. "Add 10/10 wisdom tooth pain and a sliding scale emergency dentist visit and whatever debt that's about to bring to our current medical hellscape. Poor Catherine barely slept. She can't even talk. We called and arranged an appointment but it took like 4 calls and pre-emptive financial assistance stuff to even get the appointment (which is today thank F$#k)."
In post, what we learned is her wisdom tooth is severely impacted and fractured and the gum that surrounds it is infected, inflamed, and so swollen its completely swallowed her wisdom tooth and the molor next to it as well.
They did xrays in office and billed us on a financial plan, but Cat needs antibiotics and an extraction. The extraction is so complex that the in office dentist, who is on vacation for another week btw, cannot touch it and is referring Cat to an oral and maxillofacial surgeon. Which, unfortunately, surgery doesn't exist on a sliding scale. The people we've called have all told us we either need to get Cat's insurance situation sorted, or pay out of pocket. We've been on the phone with insurance people every day for weeks. There's nowhere left to turn.
Updater Post 6/29/2024
Catherine is still out of work on medical leave, right now dated for July 11th, but things aren't looking....great. She still hasn't been approved for insurance, though we have spent basically every day on the phone with the case workers so it's a work in progress but we aren't sure if it's going to be enough or fast enough at this point.
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She also hasn't been approved for disability, and my disability case is still in limbo. Last time I talked to my lawyer we were moving forward with the subpoena and waiting on the Judge to work his end, meanwhile logging in online doesn't show me anything useful. So I'm not sure where my case is at. Bottom line is, our income situation is still...beyond terrifying.
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Her tooth is doing better and the round of antibiotics seemed to do the trick but she still needs the surgery to have the impacted wisdom tooth removed. In tandem with the neck and shoulder injury. I don't even want to THINK about that.
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My insurance has some programs we were able to use this month to help with electricity bills, and hope to use again next month, but it's on a month by month basis so we have to reapply each time.
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The few very kind donations we have received have helped us manage to get the houses prescriptions this month, which we are BEYOND thankful for. But to say we are still struggling is an understatement. So many every day bills, OTC medications, and medical bills are just piling.
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Right now the most urgent needs the are the over the counter medications we all use on a near daily, if not daily, basis. I've attached a screenshot of our amazon cart, and of our current balances. And this is after we already removed several other medical items to try to whittle down the price.
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I'm trying to be as transparent as possible and update as often as possible. Thank you all so much for your continued help and support. We love and appriciate all of you.
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Had to take a break from writing this to use the bathroom, just to remember we need toilet paper too. Ya'll I am STRESSED,
Updater Post 7/04/2024
Thanks to the most recent donation we were able to get most of our OTC's from amazon! (Thank you, the way we sobbed when I got the email <3<3<3 )
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A family member helped us with a tire situation on one of our vehicles (thank you so freaking much we love you <3)
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My insurance finally paid off my CPAP supplier in backpay and I was able to order a fresh batch of Sleep Apnea supplies at no cost and they should be here within the next two weeks!
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My insurance also has a program that helped us with our electric this month, and that transaction finally processed, so our energy bill is paid.
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Catherine is still out of work on medical leave, still dated for July 11th, with no change in physical condition. She still hasn't been approved for insurance, though we have spent basically every day on the phone with the case workers so it's a work in progress.
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She also hasn't been approved for disability, and my disability case is still in limbo.
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We are still struggling with daily life financial needs like gas, prescription medications, appointment copays ($4USD each),food, (we have food stamps/ebt and go to food banks, but remember, this is a family home with 5 people and 5 pets. Lotta Mouths to feed.)
There are also other bills to consider. We share a family phone plan to help cut back on cell phone costs, but we do have a monthly cell phone bill. We don't have a landline so this is our only form of communication and runs between 100 to 200 monthly.
Our internet bill, which we recently changed providers to cut back on costs but it's still a bill.
Insurance bills, car, home, etc. Those numbers are even scarier.
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We aren't out of the woods yet but things are starting to turn around. We aren't as close to homelessness as we were 2 weeks ago, that's for sure!
- Cats Health
- Cats doctor signed her up for physical therapy and an MRI with contrast. Which .....is exactly what happened at her last appointment. He wrote her out of work another month. Medicaid says they'll cover the MRI now that she's officially been out of work a month. MRI is in progress.
- Financial Status
- My insurance is covering my incontinence supplies. The largest they could give my OBESE self was 2XL but at least it's free. Waiting on the package.
- My CPAP supplies came. That's one GOOD thing.
- We have to play pick and choose with which prescriptions we pick up and when so that's fun. Suzy is without her main medication right, and so am I. (Two different medications)
- We are surviving on charity, your selfless and caring charity, and we are about to lose all we have left. Cat's considered trying to find a new job that would take her on with her injury, but right now her FMLA is what's permitting job safety in the first place. It's a counterproductive flail out of desperation but yea, that's where we are.
- My Disability Case Status
- Call social security after a week of procrastinating because I can't log in
- Social security got me logged in. No updates on my case. So we called my caseworker. 280 days left to make a decision. So I guess we wait? I emailed them too but I'm not sure what good it's going to do.
- My mental health status
- Call my 3rd psych office this week trying to find someone who can take a DID case with my specific insurance which is a HEADACHE
- The therapist wouldn't take me unless I swapped primary care from my trans affirming care doctor to one of the doctors inside their practices instead and then get a new referral from their doctor. I'm not doing that headache. We will try another therapist I guess. Getting help for DID is impossible.
- My actual day:
- Wednesday is Stabby Day. Gotta do my HRT shot 💉 today.
- I got my injection done. No bleeding seeping pain or bruising. At least that's done.
- Gotta update the GoFundMe and the blogger. Ugh. Typing. Editing. Y'all I might be a few days late just being honest.
- Doin it now!
- Buddy is still recovering from his neuter. Almost back to normal. Playful and jumping again but still trying to lick and on his medicine.
- Life in General / Parenting
- Elenas birthday is the 19th. 5 years ago today I was in labor with her. Where does time go? My baby is 5 hunh?
- My kid turns 5 in 2 days.......my rainbow baby sweet impossible miracle child who wasn't even suppose to exist. My miracle child who survived a subchorionic hemorrhage, cholestasis, premature birth, 12 days in the NICU on TPN and a PICC line. My miracle child who I wasn't even suppose to be able to conceive due to my PCOS and left ovaries cysts sizes. My only surviving child out of 10+ pregnancies ranging from chemical to several weeks in. My beautiful miracle. Her birthday is in 2 days. And we still haven't bought her gift. We don't know if we can afford our mortgage and home. We don't know if we will have power next month. Oh my miracle child. I wish I was better. I wish I was more. I wish I could give you the birthday you deserve. My sweet child. You deserve the world and I can barely hand you a home. I've failed you. I won't give up. I'm gonna make this right somehow. I love you Elena. I will provide for you if it's the last thing I do. That's my promise to you. I will always love and protect you.
- My physical Health
- I'm out of my seizure medicine and no hopes of affording the 500$ a month price tag. I didn't sleep well. My body can't stop twitching and shaking.
- I'm on day 6 without my Allergy medicine. My hands are itchy and covered in little red dots. Oh contact dermatitis I haven't missed you or your excema.
- I am.....surviving.
- No I am not falling back into being a self un-alive-ment risk. I'm not that low (yet). I have safety plans in place in case of a mental health crisis. I am okay.
- I'm just not well.
- To cover bills and food, we have done all we can to accept every known resource. EBT, Food Banks, Government assistance programs. My health insurance assigned us a Care Coordinator and a Case worker.
- My health insurance is currently:
- Reviewing our household income and assists and determining on a month by month basis if we qualify for electric and energy bill coverage. So far, they are covering our energy for us, but as it monthly, it could change.
- Providing extermination services for roaches brought into my home by my ex-husband during a custody swap back during the early days of my escape from DV.
- Providing transportation to and from select appointments. This isn't always reliable though.
- Catherine is in the process of applying as my caretaker to attempt earn benefits. If someone with a disability already receives Medicaid, their state may allow a family member or friend to become a paid caregiver. Many states call this a consumer-directed personal assistance program. Each state has different requirements and rules. So far it seems she is eligible, as am I. The process is in progress, and we are in the reviewal period and waiting on contact or a decision.
- Phones and Internet have no eligible programs right now, so are still paying OOP for those.
- All of my medications except for my migraine medication, asthma medication, and my seizure medication are now reduced to a flat $4 USD copay. My Migraine medication is 1000 a month and my seizure meds are about 500 a month. The asthma medication I still haven't been able to afford the initial pickup of several hundred dollars and have basically given up on it altogether. No. It isn't "just an inhaler" as my albuterol is covered monthly. No. I don't owe anyone my diagnosis or exact medication names. I was hospitalized a year ago for acute respiratory failure and almost died of TRIPLE pneumonia. They thought it was a PE at first because I was miscarrying at the same time. I CAN prove all of my claims. I do not HAVE to except to official sources, and for them I have and will continue to provide my records willingly. But not to the general public.
- The family's medication are a little harder but typically fall under the 4$ usd copay though we have some issues with those as well.
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Catherine had another PT session today (9/10/2024.)
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Session Notes: She tolerated session well. Lax ball self release was effective to the L levator scap and rhomboids and allowed for pain improvements. Scap clocks were fatiguing quickly but she demonstrates good coordination of the scapula in multiple planes. Mechanical traction was continued with slightly increased resistance today for more joint spacing.
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Impairments: core weakness, decreased range of motion, decreased strength, impaired ADLs, pain, poor awareness of body mechanics, postural weakness, trigger points and joint hypermobility
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Specific Comorbidities: anxiety, EDS, Myasthenia Gravis, insomnia/narcolepsy, tremors
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Prognosis: fair prognosis
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Positive Prognosis Rationale: age, motivated for treatment, caregiver/family support, evidence of centralization and body habitus.
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Negative Prognosis Rationale: financial status, Pain Status, medical status/condition, chronicity of condition and severity of symptoms.
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Monthly Expenses
Energy, Internet, Phones, Gas (Car), Food, Copays on Appointments, Copays on Meds, OOP on Meds, Car Insurance (state requirement. It's Illegal to not own/pay for insurance.), Mortgage, Various Loans and Credit lines with our mortgage attached from where we tried to save ourselves in desperation, and more daily life costs. All of the costs that go with parenting a 5 year old, caring for 5 dogs (2 of which are service animals), and caring for adult humans that need help.
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Post/Story/Info: https://medium.com/@eternalnyx/mutual-aid-and-crowdsourcing-story-d9107dd70e40
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My GoFundMe: https://gofund.me/ee33c73a
My Ko-Fi: https://ko-fi.com/eternalnyx
My Paypal.me: https://paypal.me/wyntreblossom
My CashApp: $chaoticwyn
What has happened since I last updated?
Cat had her first physical therapy appointment for the DDD found on the MRI yesterday on 8/27/2024. She's still out of work, and has been written out for another month. She has her entire treatment scheduled and our future is based on the results.
Image shows all of Catherine's future appointments. There are 9 in September 2024 Alone.We got another check from her disability/insurance….for $3 USD?
My insurance was impossible to get ahold of, even by our care coordinator, so the energy assistance was late which means our energy was late. But they finally mailed us the check and we got the energy paid.
I'm struggling to get my needles for my injections, and some of my other medications. I'd like to just order them in bulk online but right now it's not affordable.
I enrolled my kid in kindergarten????
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Monthly Review in TLDR:
Extermination services: We need to call because the appointment still hasn't happened because :Shrug: We've reached out. They were supposed to call us. Idk.
We still have our insurances providing transportation to and from select appointments. This isn't always reliable though.
Catherine is in the process of applying as my caretaker to attempt earn benefits.
Phones and Internet have no eligible programs right now, so are still paying OOP for those.
All of my medications except for my migraine medication, asthma medication, and my seizure medication are now reduced to a flat $4 USD copay. My Migraine medication is 1000 a month and my seizure meds are about 500 a month.
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Monthly Expenses
Energy, Internet, Phones, Gas (Car), Food, Copays on Appointments, Copays on Meds, OOP on Meds, Car Insurance (state requirement. It's Illegal to not own/pay for insurance.), Mortgage, Various Loans and Credit lines with our mortgage attached from where we tried to save ourselves in desperation, and more daily life costs. All of the costs that go with parenting a 5 year old, caring for 5 dogs (2 of which are service animals), and caring for adult humans that need help.
Per Request:
- My GoFundMe: https://gofund.me/ee33c73a
- My Paypal.me: https://paypal.me/wyntreblossom
- My CashApp: $chaoticwyn
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