Post-Traumatic Stress Disorder (PTSD) Support Group
Find support with others who have gone through a traumatic experience. Whether you have chronic or acute PTSD, we are here for you.
I am so sick and tired of being sick and tired.
At the end of last year I was sent to an ear-nose-throat doctor to evaluate whether I would benefit from having my tonsils removed. They used a local anesthetic and scoped down my throat to look at my tonsils. Less than 48 hours later I was in the hospital because I had an allergic reaction to the anesthetic. My throat and lungs were so swollen that my oxygen levels were critically low.
I am in grad school so I couldn't afford to take a week or two off for a tonsillectomy so they patched me along for a month. Things went from bad to worse. Long story short, my heart and lungs were severely impacted by my carrying around a (mostly medically controlled and supervised) ongoing allergic reaction for a month. When I went in for my tonsillectomy the surgeon encouraged me to write a will if I didn't have one because my odds of making it through were just under 50/50. I was terrified.
My have a neurological condition that causes my muscles to tremor 24/7 and the tonsillectomy took a LONG time to heal! It took me over a month before I could eat medium-solid foods (think mashed potatoes).
I had to take this semester off of grad school to finish recovering and because I was getting paid to go to school (I have a full scholarship and some grants that literally send us $9,000 a year just for being in school, and I don't have to pay them back) we are down an entire income.
My neurological condition has finally hit stage 4. My neurologist says the only solution now is brain surgery. I saw a neurosurgeon a year and a half ago who wouldn't touch me because I am so young. I saw another one a few weeks ago who said the same thing. Both are recommending I go to the Mayo Clinic or Cleveland Clinic. Unfortunately I have state-based medicaid and neither location will accept it.
A year ago my insurance actually approved a trip to the Cleveland Clinic. My insurance pre-authorized the surgery and six follow-up visits but the Cleveland Clinic refused to take me (even though my insurance was willing to pay them) because they didn't think I could pay the balance of anything left over (despite my husband's mother offering to put down an exorbiant amount of money in advance to make sure the procedure gets done).
I feel frustrated because no one is telling me I don't need brain surgery ... everyone is telling me I am too young and therefore I should have my brain mapped first. My state LITERALLY does not have A SINGLE facility with the equipment I need to get it done. When I asked my insurance yesterday what my options were they actually told me they didn't know and the woman asked me if I was in a position to get a job where I'd have different insurance.
My muscles tremor from the inside out and my medication for it is failing me. My tremors got so bad at the end of last year that a cardiac muscle pulled itself, and when it did so it fractured one of my ribs. I am not exaggerating, this is really my life. I've recently noticed that I started bleeding even though I had a hysterectomy (TMI I know) and so I was concerned and called my doctor who suggested it was just a tremor issue that one of the bigger clinics could solve.
It took me eight months for my insurance to approve Cleveland last time and I don't think there are any other big clinics willing to accept my insurance. Mayo told me that before they could even see me I would need to pay $5,000 upfront. I can tell you this: if I had $5,000 up front to give them I wouldn't need state based insurance.
My optic nerves are tremoring which is causing me to see black spots and when I push my body too hard I literally lose my vision. It looks like fireworks when I close my eyes (but in a bad way).
Everyone is telling me I need this procedure done but no one is willing to help me. I don't know what to do and I am really, really scared. With my cardiac muscle pulling itself (which happened before the tremors fully spread to my eyes) I am horrified it will pull and I'll just die. Either that or I will pull it and not know, or think I can just push through it causing something worse to happen.
My doctors all seem to empathize about how horrible my situation is but no one is in a position to actually help me. Meanwhile I feel like I am literally dying and my body is (literally) falling to pieces.
I am so sick and tired of being sick and tired. I can't drive, I can't sleep (my tremors won't let me hit a state of physical rest well enough to sleep), and it's impacting the things I want to do with my life. I'm terrified that by the time I would have found a place that can take me it would be too late. Even worse that my neurologist wants ME to call clinics to see if they'll take my insurance before he bothers filling out the paperwork to send it over (because he doesn't want to waste his time). I tried to get a third opinion (because he was my second opinion) and that doctor reviewed my case and told me to go to a bigger clinic.
When I saw the neurosurgeon a few weeks ago I explained to him the predicament I am in and he encouraged me to look into alternative forms of funding for my procedure (like GoFundMe). Seriously, this can NOT be my life. I'm not even 30 yet and I am falling the @#$% to pieces. I feel wretched.
I also feel like a bad person because all the people I go to school with are posting their achievements all over the internet and I am not there. I feel guilty for taking the semester off even though I had no choice and I am just now taking the finals I should have taken in the beginning of December. I feel resentful towards my peers and friends, and that's an awful feeling. They are all so busy living their lives no one is touching base with me even when I reach out to them.
I'm out of sight and out of mind dying alone in my house. My husband is frustrated because there is nothing he can do, and my daughter is only six and doesn't quite understand what is going on.
What am I supposed to do guys? For the first time in a long time I feel genuinely depressed. I just want to hide in my bed and cry but I know that's not going to solve anything. I want to yell at my doctors but that wouldn't solve anything either.
I feel like I have no options and everyone is just like "sucks to be you." You've gotta be @#$%%^&* me. Right?
At the end of last year I was sent to an ear-nose-throat doctor to evaluate whether I would benefit from having my tonsils removed. They used a local anesthetic and scoped down my throat to look at my tonsils. Less than 48 hours later I was in the hospital because I had an allergic reaction to the anesthetic. My throat and lungs were so swollen that my oxygen levels were critically low.
I am in grad school so I couldn't afford to take a week or two off for a tonsillectomy so they patched me along for a month. Things went from bad to worse. Long story short, my heart and lungs were severely impacted by my carrying around a (mostly medically controlled and supervised) ongoing allergic reaction for a month. When I went in for my tonsillectomy the surgeon encouraged me to write a will if I didn't have one because my odds of making it through were just under 50/50. I was terrified.
My have a neurological condition that causes my muscles to tremor 24/7 and the tonsillectomy took a LONG time to heal! It took me over a month before I could eat medium-solid foods (think mashed potatoes).
I had to take this semester off of grad school to finish recovering and because I was getting paid to go to school (I have a full scholarship and some grants that literally send us $9,000 a year just for being in school, and I don't have to pay them back) we are down an entire income.
My neurological condition has finally hit stage 4. My neurologist says the only solution now is brain surgery. I saw a neurosurgeon a year and a half ago who wouldn't touch me because I am so young. I saw another one a few weeks ago who said the same thing. Both are recommending I go to the Mayo Clinic or Cleveland Clinic. Unfortunately I have state-based medicaid and neither location will accept it.
A year ago my insurance actually approved a trip to the Cleveland Clinic. My insurance pre-authorized the surgery and six follow-up visits but the Cleveland Clinic refused to take me (even though my insurance was willing to pay them) because they didn't think I could pay the balance of anything left over (despite my husband's mother offering to put down an exorbiant amount of money in advance to make sure the procedure gets done).
I feel frustrated because no one is telling me I don't need brain surgery ... everyone is telling me I am too young and therefore I should have my brain mapped first. My state LITERALLY does not have A SINGLE facility with the equipment I need to get it done. When I asked my insurance yesterday what my options were they actually told me they didn't know and the woman asked me if I was in a position to get a job where I'd have different insurance.
My muscles tremor from the inside out and my medication for it is failing me. My tremors got so bad at the end of last year that a cardiac muscle pulled itself, and when it did so it fractured one of my ribs. I am not exaggerating, this is really my life. I've recently noticed that I started bleeding even though I had a hysterectomy (TMI I know) and so I was concerned and called my doctor who suggested it was just a tremor issue that one of the bigger clinics could solve.
It took me eight months for my insurance to approve Cleveland last time and I don't think there are any other big clinics willing to accept my insurance. Mayo told me that before they could even see me I would need to pay $5,000 upfront. I can tell you this: if I had $5,000 up front to give them I wouldn't need state based insurance.
My optic nerves are tremoring which is causing me to see black spots and when I push my body too hard I literally lose my vision. It looks like fireworks when I close my eyes (but in a bad way).
Everyone is telling me I need this procedure done but no one is willing to help me. I don't know what to do and I am really, really scared. With my cardiac muscle pulling itself (which happened before the tremors fully spread to my eyes) I am horrified it will pull and I'll just die. Either that or I will pull it and not know, or think I can just push through it causing something worse to happen.
My doctors all seem to empathize about how horrible my situation is but no one is in a position to actually help me. Meanwhile I feel like I am literally dying and my body is (literally) falling to pieces.
I am so sick and tired of being sick and tired. I can't drive, I can't sleep (my tremors won't let me hit a state of physical rest well enough to sleep), and it's impacting the things I want to do with my life. I'm terrified that by the time I would have found a place that can take me it would be too late. Even worse that my neurologist wants ME to call clinics to see if they'll take my insurance before he bothers filling out the paperwork to send it over (because he doesn't want to waste his time). I tried to get a third opinion (because he was my second opinion) and that doctor reviewed my case and told me to go to a bigger clinic.
When I saw the neurosurgeon a few weeks ago I explained to him the predicament I am in and he encouraged me to look into alternative forms of funding for my procedure (like GoFundMe). Seriously, this can NOT be my life. I'm not even 30 yet and I am falling the @#$% to pieces. I feel wretched.
I also feel like a bad person because all the people I go to school with are posting their achievements all over the internet and I am not there. I feel guilty for taking the semester off even though I had no choice and I am just now taking the finals I should have taken in the beginning of December. I feel resentful towards my peers and friends, and that's an awful feeling. They are all so busy living their lives no one is touching base with me even when I reach out to them.
I'm out of sight and out of mind dying alone in my house. My husband is frustrated because there is nothing he can do, and my daughter is only six and doesn't quite understand what is going on.
What am I supposed to do guys? For the first time in a long time I feel genuinely depressed. I just want to hide in my bed and cry but I know that's not going to solve anything. I want to yell at my doctors but that wouldn't solve anything either.
I feel like I have no options and everyone is just like "sucks to be you." You've gotta be @#$%%^&* me. Right?
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I haven't written in my diary on my computer since May because I thought that my computer was dying. I got away from writing but my computer is hanging in there. I think that I will start writing in it again. It's so therapeutic.
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First, I hope everyone is doing well, and continuing to fight that good fight! Keep up the great work on yourselves; I'm rooting for all of you!So, I started doing therapy at the beginning of the year, when I was in my most depressed state, but with my therapist, I made big changes and steps in the right direction. But, over a month ago, she couldn't take my insurance anymore, and I had to stop...
Big puma purrs of support, Alice. I was dx'd with epilepsy at 19, managed along with fibro from 25 onward, and up till the blipping injury in 2011? I could still hike, do *stuff*.... I'd hurt, but I could do. Now? Pfft.
As far as I'm concerned? You're feeling a normal feeling for your situation. It's okay to be upset, depressed, angry, in disbelief, terrified, whatever, because it seems so effing surreal. And going for GoFundMe or even MedStarter/Kickstarter (MedStarter is usually about research, but if you detail your issues a bit, the medical geeks may want to contribute?).... You could st your hubby on that, in fact, b/c then he has something he can *do* (mine needs that) and you won't have the stress of it yourself?
Sorry to ramble. Big purrs of support.
I did grad school, too, so I know what you mean about seeing the achievements of classmates seeming to leave you behind stuck in this tangle of problems. Yes, as you said, "You've gotta be @#$%%^&* me." @#$%%^&* indeed.
I would go the GoFundMe route for the $5,000. Your situation is so ridiculous doing that might actually move a neurosurgeon, too.
So sorry for this terrible situation, and you've got all of our emotional support, you can be sure. If we had the money, you know you'd have it from here right now. But at least be sure we're with you, because in our own ways we know situations like this all too well. You're not alone even in this complex one.
Sorry. Couldn't resist. . .
Nothing brings out my chaos conditioning more than taking on too much at once. When I have too much on my plate, I start prioritizing and setting aside as much as possible to re-consider at a calmer moment. I am frequently amazed at how many of my crisis' resolve themselves while I am focused on cleaning my plate. Other crisis' just grow into yaddah blahs I learn how to live with.
My example of the moment is from January, 2006 when I rolled into New Orleans, 4 months after Hurricane Katrina. I spent most of 2006 with the volunteer clean-up crews. What a sad, moldy, toxic mess. Where do you start?
A Mother Teresa quote became my life line that year.
"Just do what is in front of you."
I appreciate all of you.
Lilac -- I could ask my mother-in-law for the $5,000 but the procedure I need requires two surgeries about eight weeks apart. The first one alone runs around $50,000 without insurance. It's expensive because what I need is a Deep Brain Stimulator, which is like a pacemaker for the human brain. They attach electrodes to the brain and connect them to leads which run through your neck. 6-8 weeks later you go back in and they insert a battery pack in your chest or abdomen, wait a few weeks and then turn it on.
I am young and my neurological condition is slightly a-typical. Since there's only one shot to place electrodes (they can't go back in due to the increased risk of infection), they need to get it right the first time. I need a "brain mapping" to let them know - for me, individually - where the electrodes need to go. It's kind of a mess. :-\ I simultaneously feel too young and too old for this $%^&, lol.
Leo - I am with you and appreciate your understanding. I've been tremoring since I was 21 and it went four years without being properly treated (while my doctors tried to figure out what was wrong). I am like you in that I can do things, but not without an extreme amount of pain. My pain levels have been so high I have actually disassociated from it without realizing it, and overdone it. I'm working on mindfulness now so that doesn't happen, but it's amazing the things people can do even when things aren't perfect with their bodies. Invisible illnesses are literally the worst. I still get old people who want to grumble at me on my bad days when I need to use my handicapped placard. It's bad. I am going to wait and see what my insurance covers at some of the research hospitals (if it can transfer) and if I come up short I'll be sticking my husband on something. I appreciate the advice on MedStarter and KickStarter! Leo, I don't know what you have that the doctors think you are too young for, but if you ever want to talk about it I am here for you.
Muji -- what did you go to grad school for? May I ask what you studied?
Arfie - I died reading your first sentence. I LOVE word puns and it made my day! Also, I think it is very admirable you helped the post-Katrina victims. I wasn't able to go there, but I've seen pictures and they really needed people like you over there to help.
Cheesecake- thank you. I plan to call around today. I hope your friend is okay now?
Sarah - that statement works both ways. I feel for your situation too.