MY FAMILY'S STORY
Background
I have filed for disability. I am a 50 yr old single mom. I have one daughter in college and a 9 yr old with special needs (ASD-Autism, GAD, ADHD).
I had a 20-year career in IT / Marketing. When my weight dropped dangerously low in August of 2023 all of my previous disabilities became an emergency along with it. I am 5'8" and weighed 92 lbs. I quit my last job on medical advice in Oct 2023 and filed for disability in March 2024 as I remain unable to return to work.
My IRA was drained during a past legal custody case. My ex (nationalist/Trump Fanatic) and daughter (Trans) were legally separated. Alcoholism was also involved. When we left, we fled. It almost turned violent. When his fist went back, I had no choice but to leave. Kids had to have a separate lawyer. One of those stories. Most IT people have decent IRAs, but that's why I don't and how I came to be an exception. Since October I have since drained the rebuilt IRA getting this far.
I REALLY need help at this point. Friends, family, and fundraising become all that is left during the months the disability application is processed in the absence of an IRA.
I'm trying to cover shelter, utilities, and our car. The dollar goal is based on 6 months of these monthly bills with some wiggle room around GoFundMe transaction fees.
Any amount is helpful. Feel free to reach out with any questions about any of this.
PLEASE HELP.
Other Ways to Contribute outside of GoFundMe.
If you would rather use another app to contribute please contact me.
I have appreciated EVERYONE who has reached out about this already. It's in a lot of ways a scary thing to talk about.
Image Last Updated: 5/7/2024
Medical & Mental Health
The primary diagnosis is (C)PTSD. This started in 2014, the last time I had a medical emergency. It got bad in 2019. I was unable to get diagnosed or get help till 2022 due to pandemic-related staffing issues. It continued to get worse. In August 2023, it compounded again and again in September 2023. It became unmanageable By Oct 2023-it compounded again and was disabled by it. Its worse now.
When this started in 2014 it was triggered by a medical emergency along with personal issues around the subject of abandonment. In September 2023 it was retriggered by the exact same thing, same in 2019 hence the compounding.
In September 2023 medical, personal (social/relationships/family issues), career and financial issues all went to hell in the same 3 week block.
I've always had Generalized anxiety, but it's coded as "severe" currently. Depression added.
To claim PTSD as disabling you have to check off a certain number of symptoms. It also has to be impacting you medically as well - affects my heart, weight, and every stomach problem I have. The following are the things that go along with severe anxiety / (C)PTSD involved.
These are my symptoms:
- Panic and Anxiety attacks. I wake up with anxiety attacks everyday. Panic attacks are random. I get dizzy with these and my blood pressure goes up into the 180s. Often enough to be on blood pressure medication right now. That high of blood pressure makes me feel sick. It ruins a lot of the day if it gets up that high for even part of it.
- Irritability/Impulsivity: Emotional outbursts I cannot control. What most don't know is it isn't even my words. I'm quoting a few specific people every time. It's from other times the same thing was triggered. It's worse in text or type than verbal even.
- Depression - Pre-existing off and on through life. Causes things like needing haircuts when I haven't showered in so long I tear out hair trying to untangle a bush mop. It doesn't do that when it's shorter. Almost every anxiety and panic attack leads to a crying spell. Almost every trip out of the house for one reason or another seems to lead to it.
- Disassociation/Emotional Withdrawal/Isolation / Social functioning / Communication Issues - Multiple checkboxes, but for me it FEELS like it comes from the same place. This is all just plain fear. It is also all avoidance in some way or another. Other than for appts, and necessities I haven't left my apartment since September. For necessities, it's been all online orders and curbside pickups. I do have some good days where people's houses or places low on people I have just always been comfortable at I can do. Outside of my house though is a landmine field for PTSD and I can't control it. Bureaucracies are horrible- ANY stressor I run into is risky for this happening. I threw a plastic pharmacy basket at the pharmacy window last week because i couldn't pick up my son's Adderall. My license was expired. I blew up and had to return to later to get the prescription after that.
- Anger or Guilt everywhere I go and after almost any conversation. If I have a conversation inside my apartment or at a person's house I'm a different person. Stuck in fight/flight outside it. Severe osteoporosis in itself makes it risky to be out of the apt as well due to the high risk of break. The IRS, friend of the court, secretary of State and several others have me recorded yelling at them, lol. I won't be around men at all unless they are family or happily married. I don't want to be anywhere near them. There is a fear of being ambushed from everywhere/everyone about something. When you are this much not yourself and you are unpredictable to yourself. It becomes not safe out there. Since this started I have had several issues with jobs around the communication issues it has been creating. Its easy to start speaking and communicating from that fear place versus what is reality. Going so fast Ill miss words, repeat, speak like flow of consciousness. Brain in hyperdrive.
- OCD Symptoms - I have never had OCD, but given that OCD compulsions are also fear-based these symptoms will occur with it. Prevents bad things from happening. For me, its created from the concept of rules. I made several new rules to prevent events that would trigger anxiety/PTSD so I could function for the last 5 years. A lot around the order in which I do things. Grocery shopping takes 11 hours, now down to 6 due to these rules. The lack of concentration and memory issues that come with this lead to a daily number of things to correct. Each time it happened a rule was added to prevent those from interfering with adult life or failing and causing more anxiety. I started making these rules to counteract the adulting impact of PTSD on memory and concentration. There are so many now I have a hard time functioning. I also can't get around them as it threatens safety, security, etc now. How much of that is true and how much of that is in my head can't be separated.
- Lack of Concentration and Memory Issues - The origins/causes/triggers of PTSD create this. Until healed through therapy, mindfulness, meditation, etc this will be problematic. It's 10 years of unprocessed memories that feel like they happened yesterday and all at once, all the time. It hijacks my brain and I lose hours. Only when I "wake up" do I realize it happened at all and it's 2-3 hours later. Just gone, subtracted. Scatters the brain making focus very difficult and messing with short-term memory. Sept-Dec 2023 is a blur. The times this is triggered or compounds are like that. The other times are the same. Memory gets blurry and there is a lot of confusion. Working, when this is happening is impossible because of what it does to my ability to think. Filling out this disability paperwork and adulting due to this is very very difficult. I can only guarantee a 5-minute attention span on a single thing. It leads to me forgetting things A LOT.
- Paranoia. This is one of the worst ones in impact, frequency and severity. GAD normally gives me a certain amount of this, but I've learned over time how to recognize the real worry vs the what's in my head. This has ZERO perspective right now. Its where the "fight" part of the fight/flight comes in for me. People, organizations, businesses and bureaucracies I'm paranoid about. It's usually related to unknown ulterior motives. If I don't do it to one of those, that's the rarity right now. Its whats kept me silent for a long time about this stuff. I don't trust myself to tell the difference right now between the two. It makes it hard to be out socially. I'm finishing sentences for people thinking its an attack before the sentence finishes. I cant tell the difference right now.
- Shaking/Dizziness. When I'm in anxiety attack mode my hands shake pretty badly. Currently occurs 3-5 times a week. Muscles tense enough during these periods to end up sore after especially in legs and feet. I only notice they start getting sore. Blood pressure is way up during these times. Dizziness can occur as well.
- Medication. I am on one psychiatric med and one antipsychotic specifically being used to treat PTSD. The medication is the same one normally used to treat veteran-related PTSD. The dosage was recently raised this week, but has been very very helpful in managing symptoms.
Stomach Issues are better now, but are still healing. Stomach ulcers were discovered in 2019, 9 of them. 2 were bleeding and very bad. During the pandemic, testing fell behind. Anxiety was so high about dr offices during the pandemic and the anxiety around having to do that while loved ones weren't allowed with me along with financial difficulties caused the delay. No person with anxiety/PTSD who knows the medical tests themselves are triggering could have handled that pandemic regulation so I waited.
Throughout 2023, my whole digestive system was just painful. All of the time, sometimes it made me dysfunctional, sometimes not. It was a moody mix of brain fog, irritation from pain, exhaustion, acid reflux, painful to breathe when that happens, diarrhea, painful cramping (like a bad celiac reaction, but not), a growth inside of my body I could feel even (wasn't a growth-non issue now), constant nauseousness, digestive system organs on fire in my chest and stomach, occasional vomiting. It was very scary.
When my weight dropped MANY medications were prescribed. Some of the combos of drugs are not normally given because of the damage they can do to other organs.
The food absorption issue itself became an emergency. Anxiety/PTSD soared and I started planning my death. No joke. The last part of Aug thru Dec 2023 is a bit blurry for me.
In Oct 2023 tests were performed. 7 stomach ulcers. None bleeding. Medications were added again. I stopped taking NSAIDS (excedrin) in Nov- Jan.
In Feb 2024 they re-ran those tests. Stomach ulcers are completely healed, but the damage done has not and isn't expected to for a year.
The diagnosis is Reactive Gastropathy. Damage done by NSAIDs refers to damage done by stomach acid, and acid reflux.
The other remaining diagnosis is Peptic Duodenitis. It is where food is absorbed so in theory as I heal this year, the rate of weight gain will go up. This was missed for many years because it's also the same place biopsies are taken to determine celiac disease. It made it look like typical celiac damage, but I have been GF since 2007. Previously, they kept re-testing my gluten-free adherence to that diet instead of looking for other causes knowing I had that. In this case, as well it was caused by NSAIDS (excedrin).
It will be a year before this is healed as of now. I have no more pain, but still experience a milder version of the same digestive issues. I will till healed. I won't be taking over-the-counter painkillers ever again.
There is a big link between stress and anxiety and these particular locations in the digestive system as well. They make each other worse.
I don't know when I was first diagnosed with Anorexia, but somewhere along the way it happened and remains. The cause isn't part of an Anorexia diagnosis. You can look at it as stemming from malnourishment or malnutrition which have also been diagnosed. It's not coming from an eating disorder, but the stomach conditions are going to interfere with appetite. Very underweight. I could have eaten all day long, but little would have been absorbed. I am monitored monthly for steady weight gain right now. This comes with a lot of fatigue and exhaustion. This also affects blood pressure if not "responsibly" gained. Steady is better than speed.
(C)PTSD makes this hard to manage as it messes with memory and the concept of time. It can steal hours involuntarily. I find out when I "wake up". Simultaneously, time can also be stolen doing physical things. I discover these when I look at the clock and find out it took 2-3 hrs more than it should. Then I know what happened.
I don't have a consistent eating schedule in any way due to this. Had to start counting meals instead of looking at them as things that occur at different times. There are still many days I miss a meal or two due to just being lost, subtracted.
Current weight is now 105 lbs at 5'8".
Last Updated: 4/30/2024
My low weight is part of the cause of severe osteoporosis as well. Why my body has issues making bone has been an endocrinology mystery since 2010. I had Osteopenia at 26yrs of age. I had "mild" osteoporosis in 2015 when I was 41. Its a common celiac disease complication so it didnt get alot of focus at first. I'm NOT low on Vit D or Calcium. If I take addl' calcium, from a vitamin for example, levels will skyrocket. Just wont make bone.
In Sept 2023 it became Severe osteoporosis. My left side neck and hip are the worst are the worst of that. There are signs this has started to affect the bone marrow. Its important I START treatment for this ASAP. I've had it drilled into me by doctors I cannot fall. Not only will a bone break, but it also would have a very hard time healing. I had to reduce a lot of risk minimizing my quality of life due to this. This makes me very sensitive to cold. Winters are literally painful. Smoking can also interfere with this. I started quitting smoking in March.
Teeth are bone and have been impacted by this. A dental sign-off is required to receive the osteoporosis treatment. It is a major drug you have injected at the hospital's Cancer center. A dentist though has to sign off on it as he has to attest there won't be any drilling necessary for three months after treatment. My dentist won't do that as 4 teeth and dental surgery are holding that up. Because dental is holding up medical I have the exception where medical insurance can pay for dental, but it's a long process I am in the middle of paperwork with now. After the dental is taken care of, 3 months later I can receive the Osteoporosis treatment.
Celiac disease is considered a disability. It is an autoimmune disorder. Technically. I have another in Ehlers-Danlos. Both are autoimmune disorders. These are known to come with worse anxiety issues due to the link with the gut. It comes with the imperative of a healthy lifestyle. Fitness, yoga, versus my "sedentary" lifestyle, is cited in several places on my medical records. I have had a lot of muscle waste over the years due to all of these things. Anemia is another complication of Celiac I have. The impacts on time and quality of life with Celiac is why it is considered a disability. It is not just about food. Anemia adds to fatigue and affects stamina.
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DISABILITY CLAIM DETAILS
CURRENT STATUS: All medical/mental professional statements on the subject have been submitted to my lawyer. Both my lawyer and Ss.gov have medical teams collecting medical records and reviewing now.
List of disabilities on Claim:
Primary: PTSD (its CPTSD, DSM does not currently distinguish)-Originally dxed 2022
Addl impairment/ disabilities on Claim:
- Celiac disease
- Anorexia
- Depression
- Severe anxiety
- Severe osteoporosis (like that of a 90yr old) - Dental sign off reqd and currently delaying treatment
- Mobility of hands (i shake now)
- Peptic Duodentitis
- Reactive Gastropathy
- Insomnia
- What they phrase as "shortness of breath" tied to blood pressure issues (Anxiety/PTSD causing BP to spike to 170s/180s almost daily)
- Emotional withdrawal/isolation (unless necessary I havent left my apartment since Sept 23- Not safe out there so to speak
- Difficulty concentrating
- Memory loss
- Difficulties with social functioning.
- Stomach ulcers are healed, but are also part of the claim due to recency and their negative impact on food absorption. Excedrin was quit 3-4 months ago.
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