Just Whining

[Guest dionna]

i know that all of you are my POTSy friends and honestly sometimes i feel as if you all and my boyfriend, who lives in dc while i am in sc, are the only people who care anything about me. i am breaking apart. which makes me feel even worse... i feel like i am being defeated by life. i can't seem to get any help here. i don't even have a shoulder to cry on other than my own. i keep begging for help but everyone is too busy with their own wants. i haven't been to a doctor for pots since march. i haven't had a way. my parents promised me that if i came back home they would take care of me and make sure that i am not alone and that i would get really good medical care... better than i had gotten in the marine corps.

i had an allergic reaction to mestinon, the doctor prescribed it to me just before i got out of the marine corps and i hadn't started using it until i got home settled in because a lot was going with my family and i didn't want to any possible side-effects at that time. the doctor said that was fine. well when the allergic reaction started, i begged them to take me to the emergency room because i felt so ill. i was completely red, had blotches all over me, had chills, had the electricity feeling all over my body, i was shaking and twitching, itching, diarrehea, vomiting, extra dizziness, near fainting, and the list went on. all of these symptoms suddenly occured shortly after taking it. they would not take me to the ER. i was scared cause i had no idea what else could happen to me. instead they told me take benadryl and go to bed. they didn't feel like going to the hospital. what?

okay let us do a flash back to when i was in the marine corps. it was memorial day weekend and i was home visiting them. i got a 24 hour stomach virus the day before i was supposed to report back to Lejeune. diarrehea, vomiting, fainting--- i was so dehydrated i couldn't even pick myself up. they wouldn't take me to the hospital then either!!! my grandparents said they would drive me to Lejeune and i had decided i would just go to the hospital there. well an hour into the trip back i was extremely ill. i asked them to just stop at Fort Jackson since it was on the way anyhow. i got out the car and into the hospital--- i fainted and knocked down grandfather. this time when i woke up i couldn't move. laying down my resting heart rate was 150 bpm. i was a rag doll. i couldn't hold my eyes open and i couldn't hardly move. i con't even imagine what my heart rate would have been standing! and still even then they refused to take me to the doctors!

now my joints hurt--- popping all the time, my knees are killing me, i have insomnia, my stomach issues are getting worse, i have lost a lot of weight, etc. i have asked them several time to please take me to the doctor.--- the response is for me to just wait until i go see my boyfriend and go to the doctors then--- they don't have time. so in october i will be at the hospital doing a lot of appointments. oct 2-17th is when i will be there. my 21st bday is the 14th. i am so happy i will be with him then!

i am left at home by myself all the time. i never get to go anywhere. why? they prefer to ride their motorcycles... that i can't ride because i faint sitting down half as much as i do standing. the worst part is they always rub it in that they get to leave anytime they want to. they come back talking about how much fun they have and how i should have been there--- "oops but you couldn't cause you are sick" is what they say laughing. everytime they leave my mom tells her poodle to watch me cause i am sick. she wanted to take a trip to the beach and said she was going to wait on me... but oops she wanted to go on her motorcycle so i couldn't go to the beach either--- they never did go though--- no big deal it is just that they rub it in my face all the time. i don't think they believe me.

i asked for help to move my bed cause the ceiling was leaking on it. my dad got up in my face 3 inches away yelling. asking why i couldn't do it myself. it is heavy and big for me. the legs are all messed up too. i am always getting cussed out for whatever. my parents are always fussing about each other to me. they are always hollering. why?

i know they just wanted me to come home to give them money cause they can't afford their bills and to clean the house, have food on the table. while i was at boot camp, my mom told my grandma and papa that they only reason she missed me is because if i was at home, the house would be clean and she wouldn't be looking at the mess she was and supper would be on the table. my grandparents were disgusted. before grandma died she told me to not come back--- her and papa would miss me but i would be better off far away. papa is the only person in my family that has come to visit me. my parents have always used me. i have used my last dollar all the time to pay their bills and my brothers' bills--- my other grandma's bills--- that i never even get a thank you for. they keep me broke. i feel obligated. i don't pay rent so perhaps i shouldn't whine, but the rest of my families bills? taxes on property, child support... i own no property, i have no child. you are supposed to help family right? but i just wish they would help me. i promise i don't ask for much. and i over pay for them to take me to the airport--- that is all they have done for me since i got back. which i am very thankful for, because i got to see my man. my love.

in a few months though my boyfriend will be out of the marine corps and we will be able to move somewhere cheap. that is the only thing i look forward too. i tell him that he is my life all the time. he is. if i weren't for him and you all... i don't know where i would be. you all give me hope about POTS and he gives me hope for a better life.

from the bottom of my heart as i wipe the tears away, THANK YOU ALL!!!

dionna

[bttrflyamby1981]

OHHHH poor Dionna!

How unfair for you. I don't think you need all that on top of everything you are going through. I wish you the best in dealing with the way your being treated. People can be so heartless sometimes. I can relate to the teasing and the carelessness, if you need to whine, I'm always here for ya!

(((HUGS)))

Amber

[nadine]

Dionna-

I am not sure what to say, but this is clearly seems like a very non-supportive, stressful environment for you. Do you have any supportive friends or other family you can stay with?

If you are on disability- how about some social service involvement from a local agency? Perhaps a local United Way could direct you to an agency that could provide in home services, transportation, maybe some alternate housing that you may possibly be eligible for where you wouldn't live alone. There are often many programs that one doesn't know about. Try local Adult Services through Divison of Human Services for possible services?

This just sounds very unhealthy. Sorry you are going through this.

[jenwclark]

Dionna,

I'm so, so sorry. *big hug*

I hadn't realized it, but you're almost exactly the age I was when I first got really sick. It's a really sucky way to start adulthood, isn't it. You deserve better from your family, and if you ever start to doubt that, just come to us and we'll set you straight.

You're doing really well against tremendous odds. And you're offering insight and support to people you just met on here! Thanks for being you.

Spike

[marnian]

I'm so sorry...that sounds so horrible! I'm thinking about you and sending positive thoughts in your direction!

Maybe you could call your local hospitals and ask if there are any programs to help you get to appointments there? I know my area has almost free transportation for people that have no other way to get to the doctors. A lot of churches/synagogues/etc also have various volunteers in place. If you'd be comfortable with one in your area, you could call and ask for help. I was able to find someone to talk to on the phone regularly that way. I found it comforting to have someone calling me to see how I was doing and so forth. They also offered help with groceries, getting to appointments and such.

Hugs!

Marnian

[wareagle]

Oh hon..I'm so sorry things are so tough right now. Dealing with this disorder is hard enough without having your family..the people you love being so unsupportive. I don't have much to add..the others all had some great suggestions. I'm sorry you have to go to DC for med. help but at least Oct. is coming up soon...maybe til' then you could spend more time with your grandpa and less at home? I hope you're feeling better soon...((((hugs))))

[Radha]

i cant imagine how awful it must be for you without any support, this illness is terrible and we all need so much love and compassion, i am sorry that you dont have this, but people in this group are very understanding and here to help, hang in there

radha

[sally]

dionna

sorry to hear about what your family is doing to you. I'm not sure of your financial situation and whether or not you are on military disability or regular disability etc... but , Have you contacted your local Social Services agency? You should not have to reside in such an abusive environment. Maybe you can check on residing with someone else close to you or check into social services to see about residing in your own place with help if possible.

If you haven't already checked, you may want to call to find out what you need to do to get disability if you haven't done so plus medicaid for insurance. Plus there is housing avail for the disabled or low income depending in your financial situation, that require no payments or small payments through what we call Section 8 vouchers here in our state. I'm sure most states should have it available. You may have to be on a waiting list but at least you'll know that something is out working for you to get into a better environment.

In our state a person can reside in the state housing or rent with a landlord in a section 8 available homes whether is is a house or apartment. These homes or apartments are inspected by the state agency for safety etc and then the rent is paid directly to the landlord, so the tenant doesn't have to worry about the rent being paid or not monthly. And, they are usually yearly leased and inspected. Plus there are agencies to help with the electric and other things as well.

If you require a person to help you, there are programs that should be available to come in and help with things such as cleaning and cooking pluse medical needs if needed. And if it is necessary, a live in Paid person can be made available depending on your health situation or the states availability of funds or persons.

Plus you can receive state aid for food as well. Now all these things are based on your income so there are limitations or cut off for income..that the social services dept can advise you what that is. But you still may want to check on housing information or whatever help you can recieve.

I'm not sure of where you reside but here a few links...

http://www.ncdhhs.gov/aging/housing2.htm#2

http://www.govbenefits.gov/govbenefits_en.portal

http://www.hud.gov/local/index.cfm?state=s...p;topic=renting

http://www.cchra.net/

http://www.chasc.org/cola/

http://www.hud.gov/local/index.cfm

Good luck and best wishes.

[Guest dionna]

i had an appointment with the va to start drawing disability form them in addition to that of what the marine corps gives, which is around $500 a month. but i didn't have a way to the appointment. they are setting me up another appointment in a few months but.... until then, that is $500 a month. my bills are $100 a month, phone, computer, internet. flights to get to to dc are around $170 at the cheapest. i stay at the barracks on base for $26 a night. so do a little math here... $100 + $170= $270 + ($26 x 16days in dc)= $687, then food while i am there... so add all that up and you are looking at 2 months money worth. hopefuly though, in a few months my VA disability will kick in. if i can get rated at 100%, that would be $2229 tax free every month plus the $500 after taxes from the marine corps. i am on tri-care standard right now for my insurance. i can go to a military facility or a VA hospital at no charge but civilian doctors cost a little bit i think and they of course have to be approved through tri-care. the closest military or VA hospital is an hour away. i told them over and over... just to take me to the one 15mins away. i will pay the difference, no problem. i have been lucky enough that i am not in any debt. so if i go under a little bit because of medical then so be it... this may sound silly but... i have not even bought a pair of shoes in almost a year now. that was my christmas present to myself last year. i haven't bought any clothes in over a year. this summer i did buy one bikini, a skirt, and two tank tops. everything else i have paid for have been my bills or their bills and for food. i am not wasting money. they keep telling me i don't have money because i waste it. if i waste so much money then why are they always asking me some money when they go broke--- could it be because they live beyond thier means? two brand new trucks, insurance- taxes, two brand new motorcycles, insurances- taxes.

oh and social security... i don't qualify. i sent an email to one of the sites about social security and they said that since i had not worked atleast 5 years i don't qualify, but that i can do another thing but i would have to go to their offices. so i discussed that with mom and she promised she would take me.... no. unemployment, i qualify for a years time of unemployment, well they need a medical slip saying my disability... i talked to mom about that again, she promised she would take me to their office and take me to the doctor, no that didn't happen. there are a lot of things out there but i just need help getting the ball rolling. obviously i don't have the money to pay for taxis. it costs $20 just to get to the beginning of town. i live a little ways out. my papa is great but his vision is going so he can't drive that much. i don't have any friends here and i can't just go out and meet any...

i am just waiting on my boyfriend to be be medically discharged too. i know that when he gets out i will be fine. i lived here 18 years before, and i have been here 5 months this time around, a few more won't hurt. i just get so frustrated. i stay here by myself all the time. i do feel like i am in solitary confinement. at first i could handle it pretty well but... i just can't know for some reason. before i came back i had a lot of help form my marine friends. anything i needed, the marine corps was there to help me. now i don't have any until i go back to dc. i guess now i actually see how much POTS truly effects my quality of life. i feel stranded.

thank you all for your kind words and suggestions. i am trying to talk to different organizations and i am going to get help. thank you so much.

dionna

[Lulu]

oh, dionna!

i'm sorry i'm chiming in late, & i'm so sorry to hear of your unsupportive & very stressful situation!! ((HUGS)) i know there are resources out there for you and i hope you get hooked up w/good help soon! i wonder how much of your sxs are due to your stressful environment? ack! and it's your family? double ack! at least you seem to know the score...some ppl go their whole lives and never see how their family is hurting/has hurt them. not that it makes it any easier, but you are aware of what you need and have some ideas how to get it. those are good steps, and you are a strong person.

please keep us posted...you are in my thoughts and wished strength and continued courage! hang in there! and remember we're all here for you!

more (hugs)

lulu