Chronic Vestibular Migraine

Sigh

I’m just going to talk about this here because I need a place.

A senator from the United States held a town hall where constituents asked about the proposed cuts to health insurance and food benefits. Someone stated “People are going to 💀.” She responded “Well, we are all going to 💀.”

It got worse. It blew up. She put out a sarcastic apology video. At the end she stated "But for those that would like to see eternal and everlasting life, I encourage you to embrace my lord and savior, Jesus Christ,"

It was so distasteful and heartbreaking. This is what our politicians are doing while people are terrified they will lose life saving resources.

I remember during COVID when hospitals were having to make hard decisions between whose life is worth saving. As a disabled woman without children, I would not have been one of the priorities. I remember that feeling.

I had that same feeling when I had to fight for housing. My life wasn’t prioritized. I was unhoused for almost two years.

This has the same hit. I’m tired of the insults by the people who are supposed to represent us. I’m tired of having to defend my worth for basic resources. I am tired of having to explain why leveraging health insurance isn’t going to fix the deficit with people who aren’t going to be impacted by the cuts.

I know my worth. I contribute to my community. I educate others. And I advocate so hard for myself and others to people in office. I am fighting for people who don’t believe they will lose health care, I am fighting for people who don’t believe me, and I am fighting for myself to remain covered. I continue speaking out about what is happening, even when comments make me question my worth and my sanity. Of course I am scared. Of course I am mad.

***Please do not respond to this if what you have to say is “it’s only waste, fraud, and abuse” or by minimizing what is actually happening and under threat. I am done with the misinformation and the rhetoric and the propoganda. If this sounds mean, it is because I am mad that this is continuing to happen and people are still dismissing me (not just on here).***

#Disability #ChronicVestibularMigraine #Migraine #ADHD #Agoraphobia #PanicDisorder #GeneralizedAnxietyDisorder #ComplexPosttraumaticStressDisorder #POTS #PosturalOrthostaticTachycardiaSyndrome #MentalHealth #CheckInWithMe

Hi.

I’ve been thinking about how to bring this up here because I am feeling a little alone in this mindset and I am not sure how others who don’t mention religion in posts feel.

I am not affiliated with any specific religion, I also am not an atheist. I didn’t grow up with religion in my home, but enjoyed learning about it. I went to catholic universities; not because they were catholic, but because they offered my programs and I liked the universities. When people say they will pray for me, I usually appreciate it. In my head, it’s similar to when I tell people I will think about them/hope for them. It shows that you are holding space in your head for another person- whether someone does a religious ritual or a personal one (loving kindness mantras are kind of what I do).

However, lately religion has been in the news a lot more. It’s hard when a religious majority in a country where religion is supposed to be separate from laws is trying to incorporate religion into public schools or making laws about my body. It’s hard when I need action but I am met with prayers. It’s hard when people tell me that God will have my back and things will work out when I know that a miracle isn’t going to happen and I have to take action. When unhoused, I did not become housed by praying; I became housed because I fought for my life and advocated for myself. Sometimes it’s hard to talk on here because of this.

It feels uncomfortable to post this because I may be in the minority here. I just really don’t know. Usually these comments don’t bother me, but I think the push of values like pro-life and religion in our public schools has been wearing on me. I also know there are people who have experienced religious trauma. I know that it makes me uncomfortable when I vent and I am met with people talking about a God I don’t necessarily connect with. I know that prayers are fine for me, but comments about things being in God’s hands are not helpful because I have had to fight for so much of my basic needs.

Again, this isn’t an anti-religion post. I am so glad that people have faith in and find comfort in religion. I’m curious, though, if anyone else has felt this way.

Thank you in advance!

#MentalHealth #Agoraphobia #GeneralizedAnxietyDisorder #PanicDisorder #ChronicVestibularMigraine #Migraine #ComplexPosttraumaticStressDisorder #PosturalOrthostaticTachycardiaSyndrome #ADHD

I know that not everyone is going to agree with me, but I need to speak about it. I am speaking about health insurance in the US, as this is a community of people with health conditions. I am not here to fear monger; rather to educate. I am voicing my concerns and fears, again.

In the United States, healthcare for vulnerable populations is under threat. This is a simple fact that can easily be fact checked through a simple google search. The “Big Beautiful Bill” has already passed through one branch of government and is on its way to the senate. There are huge cuts to Medicaid and Medicare being proposed, which will absolutely impact citizens; both those who receive these benefits, and those who get healthcare from places that receive money from these safety nets.

The only people in office who are saying this is to eradicate “waste, fraud, and abuse” are lying. I contact people in office and have been told me this, after pushing back on the rhetoric. Independent news sources confirm this as well. The bill was initially presented as something only impacting Medicaid. Many sources were confused because it would be impossible to get the funds they are requesting by cutting Medicaid alone. It came out the day before the bill was voted on that Medicare cuts are also in the bill. As well as money for food assistance. Again, this is being presented as cutting off assistance for people who are abusing the system. There is not $8 billion dollars of fraud. The money they are “saving” is going to give tax breaks to the wealthiest in the county- again, a simple fact that can be googled and confirmed through reputable sources.

It is important to understand what propaganda is. It is important to educate ourselves on things like media biases, types of language, and how to discern credible sources and information. It is also important to know when you are being lied to and/or manipulated. Misinformation is rampant- including what comes out of the mouths of those in office. This is not to say other administrations have been perfect and I’m not here to discuss “what about ism” because that is taking away from what is right in front of us.

I don’t know how many people here are US citizens that receive government benefits. I do know that my lived experience in the system has shown me how much people in the system are dismissed and scapegoated. I also have learned how hard it is to get the correct services and resources as a disabled citizen. If you haven’t lived within the confines of the US disability system, you may not understand how fragile these supports are.

I am going to reiterate this point- I am disabled and receive less than $1,000 to survive on (I am on SSI). Housing vouchers are so hard to get that many people are homeless for years (see my posts from 2021-2023). I also was only receiving food assistance that totaled around $70 a month the last time I checked. Most people do not get approved for disability right away and have to fight in court to receive this assistance that isn’t even enough to survive on.

Hoping this goes away will not help those who are at risk. And, I am not trying to be offensive and this may lose some friends, prayers are not going to solve this. People suffer all the time and it’s not because they didn’t pray hard enough (absolutely continue to pray if it helps you). Disabled people have been fighting for their rights for a very long time. We have to advocate for ourselves, in whatever capacity we can. I know I cannot do things like attend protests. Personally I am calling my senators and representative as often as I can. My senators do not answer or call me back- which is saying a lot about the state of the union. I have been contacting them on social media and find many others doing the same because constituents cannot reach the people who are supposed to represent them. I am staying informed enough but not overconsumed. I am bringing my concerns to my therapists who help me navigate these by action. If anyone has been doing other ways of outreach/advocacy please let me know. I would love new ideas to continue to advocate for those of us who need it.

As an ending note- I am a Taylor Swift fan and I am hoping that she drops Reputation TV today. 😅

#Disability #ADHD #Agoraphobia #PanicDisorder #ChronicVestibularMigraine #Migraine #ComplexPosttraumaticStressDisorder #PosturalOrthostaticTachycardiaSyndrome #idontrememberwhatelseihaveatthispoint

I haven’t said much here. But I have had a lot going on in my head. So I guess here are some of the things.

Last time I tried to speak out about my fears on the mighty, I felt mostly supported but sometimes dismissed in the comments. I have been hesitating to talk about it again here, because it is hard. However I need support and I don’t feel like this is about politics.
I am more concerned for my future. As someone who uses my health insurance multiple times a week, at places that receive some funding from Medicaid and Medicare- I am terrified. If you haven’t been watching- there are proposed significant cuts to Medicaid and Medicare that will affect anyone who uses these services (even if you are disabled). These cuts will have system wide impacts (think of the places you receive care- they will likely have to shift things around with reductions). Oh- and also cuts proposed to SNAP/food benefits. I have been actively calling my Representatives and Senators. It’s a really scary time right now. When I talk to some people in office, they lie to me on the phone and I have to correct them. They do not argue with me, and usually end up providing me with clearer answers. Which is alarming, to say the least. Not only that, people who receive benefits are being called things by “leaders” in the government that are demoralizing to say the least. They say they are protecting vulnerable populations while calling us names on social media or interview clips. And cutting our benefits and putting more obstacles in the way that have been proven to fail and make citizens sicker when adopted on a state level.

My boyfriend has to change jobs because the place he works cut pay “as an experiment” for just a few branches of a national company. At a time when financial insecurity is even more greater, I am experiencing a significant increase in my trauma symptoms and my flight response has been kicking in hard. But there is no sense of normality anywhere I go.

I’m having a lot of emotional flashbacks from previously being unhoused. We are working through things in therapy, but again- I don’t feel safe even with knowing I will be covered by my insurance.

I think it’s hurting me more than I realized that I cannot access my old places and friends that I used as coping mechanisms since I ended up being displaced. Of course I can still go back and visit, talk to them on the phone or online (and I have done all of these) but we all know that is much easier said than done for people who are also managing chronic conditions.
When I panicked before, felt constrained, needed a safe place- I had them. I grabbed my dog and we went a few minutes down the road and looked for fossils or shells. I played pokemon go with casual friends. I had built up a net of accessible options. I was familiar with people there and it was a smaller town.
I live in a much bigger city now. I have tried to do things here, but the panic attacks got way worse when I moved. I have a list of a few places I can sometimes go, but no friends to just hang out with. And I have tried many ways to make new friends. I just don’t have close ones. It takes time, you know? Especially when so much of your time is managing your chronic illnesses.
The thing is- I’m doing the things most people will say to do. But being displaced really has been hard on me. And the benefits to being in this bigger city (my amazing boyfriend and my great care team) feel like they are getting further from me. I am feeling terrified of losing my health insurance and my care. The political climate is making things feel tense and uncertain. And for the first time in some time- I feel like the future might be worse. I do not hope for things anymore because I am so scared.

I know this feeling will pass. I just also know the things I am saying are also very true. My fears are valid, just as they were four months ago.

#Agoraphobia #PanicDisorder #ComplexPosttraumaticStressDisorder #GeneralizedAnxietyDisorder #Disability #ChronicVestibularMigraine #Migraine #ADHD #PosturalOrthostaticTachycardiaSyndrome

I applied for financial assistance to help cover the cost of one of my therapies, which isn’t covered by insurance. For some reason, my health insurance decided I wasn’t eligible for trauma informed care despite a diagnosis of complex PTSD 🙃So my bf and I have been paying out of pocket, which is a huge financial burden.
I wasn’t approved last quarter but I reapplied and was approved this time around!
My weekly therapy sessions will be covered by this award for 17 weeks. It was so needed, not just financially, but I needed a boost. I have been so scared about possibly losing my health insurance which covers my other care.
It’s a short, but much needed reprieve. It also was extremely validating to hear why I was selected.
I have been working really hard on establishing a good care team. I’m a diligent client, attend my appointments, take things seriously, and I work really hard to reach goals of lowering my trauma symptoms. I also have been working to establish some sort of community after being displaced. I have been volunteering when I can. It sounds like my therapist has communicated this to the organization both times I applied. It feels really good to hear someone recognize the hard work I’ve done- because I guess I wasn’t really putting all together myself.
I’m really proud of myself, and I’m so incredibly grateful for this reprieve.

#Agoraphobia #MentalHealth #GeneralizedAnxietyDisorder #PanicDisorder #CheerMeOn #ComplexPosttraumaticStressDisorder #ChronicVestibularMigraine #Migraine #Disability #ADHD

This is terrifying. I am scared for everyone in this country. I feel so ashamed to even say that I am an “American.” I am scared of the global costs (financial, environmentally, politically, etc) and the consequences to other nations.

I’ve been so mad recently. I signed up to do more volunteering, specifically at a place to support those who are directly impacted. I do not know what else to do. It felt like something, a step forward into a widening gap of needs for people who live here. But now I do not even know how much longer I will have my basic needs met.

I feel like I’m dissociating, depersonalizing. Either that or I’m in a dystopian novel. A local restaurant raided, another report at a place I used to play Pokémon go. People swept up. It doesn’t make any sense. I feel like my story doesn’t make any sense. They said it would only be criminals. I didn’t believe them. I don’t believe them now.

I am disabled. I am scared I am going to lose government assistance. I am scared I will wake up one morning without insurance and not be able to refill my medication. Right now, the news is saying coverage is not impacted. But these pauses will impact my services. And when I have that conversation, I am told it’s not happening yet. And I feel like I’m being hushed with false promises, because we all are scared it is inevitable. I don’t believe them.

I survive by accessing these supports. I survive at the mercy of this government.

I am so sorry to anyone who is being impacted by this. I did not vote for this. I do not support this.

I don’t even know if I am allowed to say this stuff on here. I just don’t know what else to do.

#Disability #Agoraphobia #Anxiety #PanicDisorder #ComplexPosttraumaticStressDisorder #ChronicVestibularMigraine #Migraine #ADHD #ADHDInGirls #Trauma #MightyTogether #CheckInWithMe

Hi all,
I started a new medication this week. It made me really tired, I slept for like 20 hours in one day, and so I emailed my psychiatrist and she told me to take it at night instead.
I’m worried because it’s a class of medication that I haven’t tried before. It’s a tricyclic, an older anti-depressant. I don’t like to take medication that is sedating (and most meds don’t really sedate me anyways). And it also has more side effects than more commonly prescribed antidepressants (SSRIs and SNRIs), which have not helped in the past.
I don’t have depression symptoms but my anxiety is absolutely a mess from trauma. I have felt very hyper aroused. I have a lot of panic attacks and it’s hard for me to organize myself to perform most daily tasks. It’s hard to explain how paralyzed I feel from my panic and trauma symptoms. I get triggered easily.
So we are trying this. I don’t want to feel super sedated all the time so I am hoping it wears off soon. If it doesn’t, I’ll have to talk to my psychiatrist about something else.
Wish me luck, please! Thank you all!

#CheerMeOn #CheckInWithMe #Agoraphobia #PanicDisorder #ComplexPosttraumaticStressDisorder #ChronicVestibularMigraine #Migraine #ADHD