Yes, finally the hospital has released Julie and I from their clutches. I am so exhausted. Julie looks better. Unfortunately, we did not find the cause of why she was throwing up. It is very complicated with the pain meds, psych meds and maybe there is something just wrong.
Roxy told me how you all had this thread of encouragement running and believe me that day I really needed it.
I slept in an easy chair, but it was of course not comfortable. I couldn't make it home because my brakes went out on me. My son brought me medicines, clothes and money.
They released Julie with no ideas as to why she's being getting sick so we may have to go through all this again. They sent a mental health person by, but even though I tried to explain to them that I am too sick to take care of Julie, that Julie seems to be confused about how to take her medicines properly, that she could lose her place in my home at any moment because I'm not supposed to have her living there -- they are just going to keep it status quo.
Because Roxy kept lecturing me on admitting myself, which I couldn't do because I can't leave Julie alone, I did ask to speak to a social worker. Four times I asked. No one came by. Oh, they said they sent someone, but Julie doesn't remember them and there were a few times that I left the room to go to the bathroom or to eat something. I am throughly disgusted with them.
I had two really bad attacks with whatever is happening with my nerves. The lady in the room next to Julie, who has Lupus, was a real sweetheart. Poor dear is 31 years old and has already lost one lung and has bone necrosis. She was in there for pneumonia. Anyway, she saw that I couldn't walk and couldn't believe it has been 5 weeks since I put in my request.
I have called the doctor's offices. The walker is in limbo. The lady in the doctor's office said I woud just have to wait for it. She spent about 20 minutes deriding on how I needed to understand how things worked. I asked her if it was her or a family member would she be happy with the answer. Of course not. Then, she very rudely asked what did I want her to do, rent me a walker. Finally, she said I needed to take it up with my insurance. Heaven forbid this woman be bothered. Also, she had failed to give the doctor the message that I wanted him to call me about what the neurologist was was saying about why they can treat me and why this permanent. Oh, that wasn't in her notes. Well, I requested it. No, I still haven't heard.
Called the insurance who were appalled at this lady's behavior. They cannot find a request, but it might be lost in someone's pile. Once found it takes 3-5 business days to get a decision. Oh, and they assigned me a case worker. Whoppy-do! Julie has one and they are useless.
My left leg now drags behind my other foot. I am tremoring so bad, there is no way someone can't notice. But no on does.
My dad suggested that I call my state senator. I think I will try that. I'm open for suggestions here. I am totally at the end of my rope. Still have a broken care, cannot make it to my appointments and cannot leave my daugther unattended. The situation is unbelieveable. Even my Cardiologist let me down. I've had a request in for a refill for high blood pressure mediction since Nov 21st. I've made calls. The pharmacy (bless their hearts) have made numerouse calls. I went by to pick up the medicine and they said that after 3 calls from the pharmacy, they still couldn't get it right and no, I don't have prescription. They were kind enough to give me 3 pills until Monday.
How many walls can one beat their head against before someone helps you? I have been asking, calling, begging, crying, going up the ladder and still I am in the same spot.
It did help so much though to know all of you were thinking about me and saying prayers.
I love you all.
Deanna, My heart breaks for you. I know what it feels like when you are in need and how hard it is to advocate for yourself. Sweetie, I wish you would come live with me. We could advocate for each other. This whole board is behind you but that doesn't help when your doctors, nurses, and social workers AREN'T. A letter to your senator may help. Also, try some churches. Ask them if they can have someone come over to help you get passed these barriers and advocate for you. I don't know what I would do without my family and my kids being there for me. They do not help me with doc appts or advocate for my RA but they are there to remind me I have some value when I feel worthless. You are much loved MS Deanna. Don't lose hope and don't give up. You have to keep trying and I know how hard that is. I have been fighting just to get warm water therapy and it exhausts me. Welcome home Deanna. WE MISSED YOU Oh my gawd Deanna! Now I know the meaning of "being between a rock and a hard place." I have never heard of anyone having such a difficult time getting help. This is absolutely ridiculous! Your Dad was right Deanna, call your Senator. I wish I was there to help you Deanna.Alright Deanna.....I suck with really hard things like this...and we all know it....so I'll just say I love you and I'm thinking of you.....and I know that somehow, someway, this WILL get fixed...it has to.
Oh...and you can always threaten to go postal....tell them you'll shoot them all, then point the cane at them and act like it's a machine gun....(so I had to have humor SOMEWHERE you deserve a little chuckle..)
Welcome home Deanna, I wish I understood how it all works over there. I am guessing you cant afford to just go buy a walker. Is it a special one or a walking frame you need? I am tempted to buy you one here and airfreight it over!!! Surely someone can get you one from a hospital or care facility even if its temporarily? I just cant believe the bad care you are getting, I would go postal like Katie suggests honestly!!!
Sending you much love, heaps of support and best wishes from New Zealand Deanna, and hoping you get some help real soon. I guess all you want for Christmas is a walker? I know how you feel!!!! Big Hugs
Wendy
I REALLY FEEL FOR YOU DEANNA. Its awful that they treat you like this and so frustrating. Maybe you should write to someone like your senator. We to here in the UK seem to wait forever to be seen and heard or to get equipment to be able to get around so I do know what you mean. My thoughts go out to you and your daughterI feel so badly for you Deanna
The health care system in this country is seriously lacking for people on limited incomes. I'm praying for you. Hugs!!
Thanks again everyone. Katie, your comments are so cute. Going postal does seem to be the only alternative at the time.
I can't do anything about most of this stuff until Monday, but I am going to pass on what I did today because I hope it will help anyone else that is in the same type of situation.
In particular, Miles2go, this might help you sister. I called the local crisis number. You can get that number from the front of your yellow pages or by looking up Community Information and Referral on the Internet.
I was so distraught and knew I had reached the end of my resources. I've had to call in the past for Julie, so I called for myself. They sent out a team of counselors to access my situation. In a lot of ways, they could not do much. But they gave me a list of numbers to call.
The main one they gave me for Julie is NAIMI. Evidently, they have advocates for the mentally disabled to get you around the state programs. So, Roxy, this one might be able to help with Kelsey's stuff. I know others have family members with mental health issues.
For me, they said that I could call out a crisis team during the week and they could help me make some of these phone calls that I am having so much trouble with. Now, that sounds like a really good idea.
They also went out and collected a bunch of food boxes for me. This is what they might be able to do for your sister, miles2go. I also have been using the food banks. When they consider your medical condition temporary (they want it to last 12 months or more), then it is hard to get help. But some food banks are free. Also, have her call a Women's Health Center at one of the local hospitals. They might be able to get her help and find resources including support groups.
The thing is if you go to these crisis numbers and get to talk to a real person, then the chances of getting some kind of help is a lot higher. Sometimes they know ways around these programs that you would never hear about any other way. These people already told me a whole lot about things that would help Julie.
They didn't have so much help for me. But I tell you that them just bringing in all this food sure did cheer me up.
If your sister is not going to recover within a 12-month period or needs the medical assistance, then going for the state help is definitely worth it. If not, crisis groups, food banks, etc. can be a big help. This crisis groups can make referrals that can get her in doors that are being slammed in her face.
I know exactly how she feels. Maybe if we knew which state she was in, someone could adopt her just to give her the added support. I hope she recovers quickly. I had a friend with cancer that was wrapped all around her lungs and breasts and she recovered. She went to some place in San Antonio (I think). But it looked pretty grim for awhile. It has been about 4 years later and she still seems to be ok. So, there is hope. But hope takes help.
Thanks again everyone. You gave me courage to make one more phone call.
Deanna-I really can't believe how awful they are treating you. It is totally unforgivable. Why is it that people who are in such obvious need, following all the right protocal have to fight constantly for just a little help? I will be praying for you and really wish there was something...anything I could do to help.
If you haven't already sone so, I think Roxy's idea of contacting churches in the area might really help. I am not sure what city you live in, but if you'd like, pm me and let me know and I will do some research on churches in your area and would by happy to make some calls for you.
I pray the Lord will prepare the way before you, cut through all the red tape, and work in the hearts of all those you are working with to imediately provide the help, care, and equipment you need.
Tara
Deanna I am so sorry to hear what you are currently going through and noticed that you said your dad suggested you contact your state senator. Here is a link to write directly to them.
I will continue praying and ask God to please hurry.
Deanna, while you may not see it right now - or ever in your life time - what are you doing, the fact that you are NOT giving up is going to leave a mark. One way or the other, no matter how small it may be. Writing the letter to your senator could snowball, you just never know. While it may seem that all of this you're going through is just for you, you are paving the way for others. These systems are all messed up - but one day they may run better. That won't happen until people like you take a stand and find a way, and write the letter and make the phone call. There are so many people out there without the know-how, but you, you've got it and you can make it work. It's like the butterfly flapping it's wings creating a hurricane concept. So hang in there, not only are you going to come through this on top, but you may end up helping a lot of other people. Even if you don't directly see it. In short.....you're a Hero Deanna. :)
Deanna,
Although I'm not in that position now, thank God, I know what it feels like to be where you are. One memory sticks out with painful clarity. My son was hospitalized about a 3 hour drive from our home because all the "behavioral health" hospital wards for adolescents in the bay area were full. I drove there after work every day for the 1 hr visiting period. I often didn't feel like it but I went anyway even when my body and mind were hurting in extraordinary ways. I remember one evening he was shaking uncontrollably from the medications and the anguish that brought chaos to his mind. As I was leaving, he was trying to get a drink of water from a water fountain with a paper cup. Every time he managed to fill the cup, he was shaking so badly the water spilled and he was only able to drink a small amount. It broke my heart. I wanted to help him but was afraid to embarrass him, so I left. I was so furious with the unfairness of it all that I could hardly see as I drove home...everything was a blurr. Somehow I made it home safely. How did I survive? With the help of a few friends who stuck by me and wept with me, and a small, tiny seed of unwavering faith that God would walk with us through the dark shadows and bring us to a place of light and sanctuary...even if it was after we passed from this earth. I hope and pray you can find friends like mine who will stand by you no matter what and a small measure of faith that will see you through the dark times. Your courage is an inspiration for us all. I am praying for you.
Alan
hi alan...
send some prayers my way to..
that goes for everybody.. I really need all the prayers i can get...
Hi Deanna - in the midst of all this you are still thinking of ways to help out others. I have missed you from this board & will email your senator and the American Ambassador in the country I live in. We with RA& autoimmune diseases are among the most discriminated people in the western world & I think we need to fight back. Where are the Arthritis Associations & Drug
Oh my goodness! Why on earth is it so darned difficult to gain some help and support when you are in dire need of it. I feel for you so much I truly do. My situation was not as grave but horrific in other terms. More than once I have gone into social services and asked that something be done to help, filled out the 20 pages of questions and made some comments that they did not care for at all. I am so sick of certain populations of individuals getting more than we Americans who have paid taxes for many, many years...but that is not a conversation for this time.
I just hope you make some progress and your burden lessens. It is extreme yuck to have to do all of this on your own, I know all too well the struggle while being too ill myself to accomplish much of anything.
I have the responsibility of taking care of my mother. SHe not only has health issues of late but has had mental problems for a long time as well and it is so hard at times. She loses medicine, forgets to take it, drops it on the floor ect. You name it she has managed to do it. The problem is she is also very forgetful, proud and stubborn which is a terrible combination which makes my life with her very difficult to say the least.
Ladder? What ladder? *grin* I just remind myself everyday that there was a time and a place when my life was really good and not such a struggle or filled with heartache.Sometimes I am so scared of what my future brings for me.
Please oh please, take care of yourself......pamper yourself, make the time to. Allow your weary days to be filled with at least one good thing, one good thought or just a nice song, a scoop of icecream or favorite cookie or a hot bath. I think that is all that has kept me going. To problem solve, you may just have to go and sit in the Dr. office and wait for them to fit you in or at least allow you to talk to the nurse so that you can get some help with your meds. And social services, call everyday. I know it is a pain and they may stop taking your calls but sometimes the "squeeky wheel" thing is all you have left.
REMEMBER: You have got to take care of yoruself for you. You have got to make you a priority, then comes the safety and care of Julie....but you first! Otherwise as we all know, not much of anything will be accomplished.
My gosh and your leg is giving you trouble as well? I just bought 2 walkers for my mother at Goodwill so I know I could possibly find one for you as well and I will send it to you. When I find it I will PM you for your address or where ever you want it sent because you should not have to go through this much misery! EVER!
Remember, we are open 24/7 to give ideas, support, empathy and concern. WE are the RA club, people who genuinely care.
jode
Oh, almost forgot to tell you:
WELCOME BACK !
Deanna,
Thanks for all your information. I'll relay it to her as soon as I can reach her. She lives in California. In the Napa Valley area. Adding to her stress is that she is being evicted from her home because the owners of the land she lives on (mobile home) want to sell the property. In fact, she has to go to court this week because she didn't get out fast enough. She got the first notice I think 2 or 3 months ago, but she's just finished radiation!! The burning on her chest has been so bad that she could hardly pack. I know because I flew out there for a few days to help her. She had some friends come over to help and the place is almost packed up but she still hasn't found another place she can afford. She was getting quite a good deal on rent and simply cannot afford anything more. She and her HUGE dog (french mastiff) will be able to stay with friends for a little bit but of course, it is not ideal. I know things will work out. They always do.
You are in my prayers Glad you are back. I hope that they can get everything worked out with Julie and finding out what is really going on. I am so sorry that you were ignored in the hospital. That is just uncalled for and I would write a formal complaint to the board.
I am still praying for you and Julie that both of you get the help and answers that you need and are looking for. Please take care of yourself hun. We need ya here!
Good morning Deanna. I hope you and Julie are doing better today. I plan on calling you later. I love the idea that you can have people out to make the phone calls. The phone calls drain me the most. You have to trust things are going to get better. If I don't have that attitude, I cannot get anything done, I just drown in depression. I will send you my walker if you don't get one this week. I am hardly using it and my cane works better for around the house. Since Brett is back and I don't have to cook, (gaining weightI wonder if I'll get another form letter in response.
I love you all so much.
Here's the contents of the letter:
My daughter and I are in dire straits and although we have both been appealing for help for a long time, all we seem to run into is roadblocks. This is rather long, but since it involves the failure of several state agencies to help us or our ability to understand how to navigate them, I have to lay out the entire situation. I hope that you can help us. If not us, then, I sincerely hope you do what you can to change the situation in the future because we are not the exception, we are the rule.
My daughter is 25. She has mental health and physical health issues. She is case managed by Value Options, but it is very poorly done. Hers is one story.
I am also disabled. I have severe Rheumatoid Arthritis and four other autoimmune diseases. Because of my daughter’s needs, I kept working far longer than I should have and now I have developed what appears to be permanent damage. I cannot seem to get any help for either of us.
My daughter has been case managed by Value Options for about four years. In that time, we have both been repeatedly lied to about what services are available to her. When it got too much for me to care for her by myself, they moved her into a Residential home.
Residential home has such a nice sound to it. But do not be fooled. It is a nightmare. We were not given the opportunity to view it or select from any other facility. We were told we had to accept what we got. This is after two years previous to this that I was told that no residential homes were available in the
This residential home was a terrible place to send an innocent young woman. It was a regular apartment complex with some mental health clients. Most, almost all the other residents were non-English speaking Hispanics. The first roommate that my daughter had was a drug addict and prostitute that continued her trade from the apartment even when it was brought to the staff’s attention. On top of that, she had some kind of health problem (again we brought this to their attention) where she dripped her blood all over the apartment. You can imagine what a nightmare this was for us in worrying about the safety and health of my daughter.
The staff did not do anything and it took Value Options over two weeks to respond to the situation. I filed a complaint on my daughter's behalf with Value Options. Since that time, it seems that her treatment by her case manager and the center has been quite negative making me afraid to file additional complaints for fear of worsening her situation.
For one thing, she was given a new case manager every couple of months. Calls were not returned by the case managers from the staff at the residential center or my daughter. She was supposed to get help to learn living skills. But since my daughter also has medical problems, she was treated as though she was not attempting to comply with the program because she is on pain meds that make her drowsy. She was blamed for her conditions, rather than helped. We were also told that they only work with mental health issues and not physical problems.
I have to wonder how one splits a person down the middle between their mental and physical health. She was not the only client with both issues and they certainly treated the others with the same disregard. They also had a 16-year old girl that was raped while staying there and a 17-year old boy who died from some kind of mistake in giving him medicine. In frustration and panic, parents have had to pull their children from these programs for fear of their safety.
My daughter's safety was always a problem. Because she was a white woman in a mostly Hispanic setting, the men were constantly accosting her and asking her for a blow job. One even entered her apartment against her will and started trying to do something. Fortunately, a girl friend of hers was over who literally forced him out of the apartment. Julie informed both the staff and Value Options who did nothing. My daughter had to call 911 on at least one occasion when another client was threatening to harm her and another person. The staff did nothing.
Finally, around July (I think), they told my daughter that she would have to leave the home because she had not paid her rent. my daughter had messed up on her food stamps and was having problems managing her money. That and memory are two of her big problems. Instead of helping her, they made it difficult for her to pay her rent and did very little in helping her to overcome these problems. They expected her to be fully functioning which she is not. They gave her six weeks to move out and said that they would give her all kinds of help including applying for Section 8. They did absolutely nothing to help her find a new location. They said that it was my responsibility even when I informed them that I was too ill to help her.
In June, my doctor reduced my hours which did not work out. Then I tried working from home. This was also undoable for me. The first of August, I had to quit working completely. I have shoulder, spine, nerve damage, walk with knee braces, a cane and use wrist braces. It is pretty obvious that I have mobility problems.
My daughter did the best she could to find a place. But I was not much help being so sick. Even though I mentioned this repeatedly to her case worker, she did not care. She also provided no help. My daughter, out of desperation, contacted one of her friends for a place to live. She was not given the go ahead to move in until almost the last moment. I was already not working at this time without any income coming in. The only person we had to help her move from a second floor apartment was her brother and we could only arrange certain hours with him.
Her case worker stormed in the morning of the day before the deadline. We were waiting on my son to help us move the rest of her stuff down stairs. Please keep in mind that I did most of the moving myself with all the limitations mentioned even though it was against my doctor’s restrictions. I had no choice. The case worker immediately started threatening my girl that if she did not get out in an hour’s time, even though we were waiting for my son to arrive, that she was going to call the Tempe Police to make sure she was moved. My daughter had never received a written letter of eviction. This was completely an act of intimidation. The woman was relentless and uncaring. She would not listen or make any compromise. After this point, the staff finally sent someone to help carry some things downstairs.
But the guy that she tried to live with in two weeks times had broken things and made threats against her. I live in a Senior Mobile Home park and she is not supposed to live with me. But under the circumstances, we moved her once again which definitely worsened my condition.
Her case manager refuses to see my daughter with me present even though my daughter has the right to have a family member present if she desires, which she does. She is also not actively doing anything for her continued care.
In the meantime, I have applied for Social Security, ALTCs, Food Stamps, AHCCCS and General Assistance for myself. The humiliation and degradation of this process is beyond words. I don’t understand how one goes to being a taxpayer to scum to be swept under the rug; but that is what it feels like. In applying for the General Assistance, I had to file for Unemployment which makes no sense because I obviously cannot work. However, I filled out the paperwork and then got a form letter that not only said that I did not provide the necessary information but that I would have to work a minimum amount of hours before ever becoming eligible for unemployment again. They made it sound like I was a total bum. Whatever, I wasn’t expecting Unemployment.
I was however, hoping for General Assistance. First of all, I do not understand why the amount is so low in this state. The most I get is 4 which is borrowed against Social Security once I get this. How in the world is anyone supposed to live on this? However, I was given the wrong forms by the DES office to give to my doctor (who bills me by the way for the privilege). Instead of someone calling me or my doctor and informing us that the wrong forms were used and being given new ones, I was again sent a form letter at the very end of the 120 day waiting period stating that “I was not disabled.” When I called and talked to a supervisor, he assured me that he would immediately fax over a new copy of the forms to doctor’s office and that I would get a letter in the mail telling me of anything else that I needed to do. Neither was done. I called again and could not get through to the person that this supervisor referred me too. None of my calls were ever returned. I again called the supervisor who passed it on again to someone named Robin. Nothing still has been done. While the amount is small, I really need it. I have been unable to physically go and sit in one of the DES offices to resolve this problem.
I really need to get some kind of help. I have called all kinds of numbers for assistance. The only agency that has responded to me and I praise them highly is Mesa Community Action Network. They helped me with a utility payment and replacing my water heater which delightfully went out in the midst of all this financial distress. But they can only help one family per year. But they treated me with dignity and compassion. Other organizations could learn a lot from them.
I am now in the position that I must go begging for some kind of assistance and I do not understand this. I have been working and paying taxes for over 26 years, almost a third of my income has always gone to taxes. When I need help I cannot get it. Yet, I see people (who surely are in need) who cannot speak English get help. And, now, they are going to get Social Security which I cannot even get. I do not understand the priorities here.
I asked to get Occupational Therapy because the problems with my shoulders and my knees make even getting around my place really difficult. I was denied because I am over the age of 21. Who made up that rule? Is there no assistance for the disabled? Can I go back and be a child so I can get some kind of help? Am I worthless now?
I’ve been waiting for a walker for over 5 weeks. I finally called them and asked to please see if I can get a mobility chair because the Neurologist says that he can’t do much for me and that these really intense tremors are going to continue. There is not anything he can do about it. My nerves are too far damaged and I am on too many medications. This goes right along with my Rheumatologist’s assessment that my immune system is destroyed and my former Rheumatologist assertion that I will not get better. Every day, the doctors seem to give me more bad news. Every day, I have to fill out more forms to prove that I am disabled. I cannot express enough how disheartening this process is.
I called the doctor’s office asking about the chair. Oh, we are waiting on paperwork. The lady assigned to durable medical goods made me feel awful. I asked, “What am I supposed to do, crawl on the floor?” After 20 minutes of deriding for not accepting the doctor’s recommendation the first time he suggested it (so, of course it must be my fault), she finally said, “What do you want me to do go out and rent you a walker?” Finally, she said I should talk to my insurance, Mercy Care. She should have just have said that was the problem instead of humiliating me further.
I called Mercy Care, who could find no record of a request, although it could be lost on someone’s desk. If they find it, it’s at lest 3-5 days wait to get an answer. That does not mean it will be a positive answer. I wonder if they have also lost the request for the MRI or is that still at the Pain Specialist’s? I get lost in all this myself. But there is no one to help me as my condition continues to worsen and I become unable to care for myself.
I already had applied to Arizona Long Term Care (ALTCs). But because sometimes, I can walk fairly well with my cane and braces as Rheumatoid Arthritis varies from day to day, I was not a Senior (I’m 49), and I knew my own name, address, etc., then I did not qualify for any help. However, I was welcome to apply again when I have knee surgery for surely I will qualify then. But, I cannot apply before or the day of knee surgery. No, I must do it in the hospital and I must get a new bank statement for them while in the hospital. How am I supposed to do that? It is ludicrous!
Yet, I can still apply, but maybe, according to the case worker, I should “fake” how I am that day. I cannot believe she even suggested that. She took it back immediately so I know as a government employee she should have never suggested such a thing. I cannot do that. I cannot fake what it does to me. In the morning, I might be able to move. At night, I get the tremors for 4-5 hours and can barely move from one room to the next. I keep having these “nerve attacks” and now my left foot seems to drag all the time. My vision is also worsening, but I cannot get to the doctors because I am taking care of my daughter. I am terrified at what is happening to my body and what will happen to my daughter if I am no longer around to advocate for her.
The last couple weeks have been especially hard. My daughter got ill. We made 7 trips to the ER at Tempe St. Luke’s. Part of the problem is that the doctor found a medicine that worked for the nausea my daughter was having. But since ER doctors can’t do medical overrides and Mercy Care will not pay for it, we had to keep going back to the hospital. Oh, I could pay for it myself at about 0 which, of course, I do not have. This often happens with insurance companies. You go to the ER and get prescribed some medicine that your insurance does not cover without an override. So, you are left to go home in intense pain and agony until you can call during normal business hours to get the medicine that a perfectly qualified doctor has written for. Why are we doing things this way? It surely isn’t saving anyone any money.
Finally, after my daughter’s doctor forced the issue, they agreed to admit her to the hospital. During her stay there, I requested four separate times to talk to a social worker to try and get us some kind of help. The last two evenings before going to the hospital, I was too sick to help my daughter. But no social worker made contact with me. We were told that someone was sent by, but I never saw anyone and my daughter doesn’t remember anyone coming by. We left unhelped. We still do not know what caused my daughter’s problem and whether we will have to go through it all again because once again, we could not get the medication that stopped her symptoms.
While there, I had two of my nerve attacks, but not one doctor or nurse ever noticed. The patient in the next room did, but none of the staff. I spent 24 hours a day from Monday to Saturday at the hospital because my brakes went out on me the last trip home from the ER. We had to use Mercy Care to get my daughter to the doctor and then to the hospital. But I could not get a ride to and from the hospital. I cannot take the bus because I cannot stand for long periods and cannot take the jarring motion of the bus not to mention the exhaustion.
I am also in the process of trying to get Long Term Disability through my former employer. But that has been lengthened by the time it takes doctors (again I have to pay for each application when I don’t have money) to do the paperwork. Now, I’m stuck. They are actively looking for loopholes to deny me this insurance for which I have paid.
I just can’t take this any more. I know that this happening all over the country. Why is it that when a person becomes disabled that their rights to be treated as a human being become so minimalized? Why must I be reduced to begging? Is it not bad enough to have my health and abilities torn away from me?
Please do something for people like me and my daughter. Please. Yes, I am begging for myself, my daughter and all those people who cannot raise their voices. WE NEED HELP! And, could you throw in a little dignity in the process because I seemed to have lost mine along the way.
Deanna~
I'm real sorry to hear of your troubles sweetie. You and your daughter will be in my prayers.
I'll have to admit I don't have time to read all that's been written; including your letter to your State Reps. That is a good idea. You might want to call the US Congressman in your district. You would be amazed at what they can actually do for you; if you have a rep. that's worth a darn. Too bad you didn't try this in October. This was an election year and the majority of them will work harder when their job is on the line. A call or a personal visit will get you further than a lenghty letter. Follow up....follow up, follow up. Don't let them forget your name. If you don't hear from them in a timely manner send them another letter....and another call. Repeat.
Best of luck to you. Hope you are feeling better after you've had a chance to rest a little.
Deanna - my heart goes out to you. I emailed the American Consulate in my country & I would ask everyone on this site to contact their senator, consulate or government representative. America should hang its head in shame.Deanna, I have written rather lengthy letters very similar to yours to the judge when Kelsey would come up for her conservatorship hearing annually. They would not even allow her at home visitation and look how happy she is now. I hope your letter does something, I am just exhausted from fighting the system for Kelsey, it is going to be tough to muster the energy to fight for my disability. Good luck Deanna. At one point I actually got a judge that would listen to me. Maybe someone will read your letter and find the compassion to look into what it is like to become disabled when you have been able bodied all your life. In the meantime, get those crisis workers over to start making phone calls for you. The phone calls are depressing and demeaning - it will really make a difference if you get a "well person" to advocate for you. LOVE
If nothing else, it helps to validated by all of you here. Sometimes you beat your head against the wall so much that you swear you are going crazy.
The letters are in the mail. I know that they are long. I'll probably have to write more, shorter ones. But at least you guys got me off my duff to do it.
Good for you Deanna! Our politicians are probably off for the holiday however, if they have attentive assistants, your letter will receive it's proper attention. Hoping for the best becomes a way of life with all of these diseases.Deanna, I've just come back online from being away on a trip, and find this horrible situation you're in. My heart aches for you and your daughter.
The letter you posted was poignant, and if anyone in the system who gets your letter still cares, should be powerful enough to get some attention. And I'm so glad you're going to have help with the phone calls. It's shameful that our nation's assistance process is so demeaning.
I'm so sorry, it just isn't right. All I can do is send love and hugs.Deanna, I'm so very,very sorry for what you are going through. Please know that you are in our hearts and prayers. Please don't give up. I cannot imagine what you're feeling right now but I have to believe there is hope.
I'm praying for strength for you. Many HUGS.
Right now, I feel hope because of your support. You can never know how much it means to me.