Disappointed In You Guys
AnonymousJanuary 3, 2007 at 2:16 am
You Guys Hurt My Feelings Big Time. I Was So Excited That I Found A Support Group For For Husband So He Wouldn’t Feel So Alone. I Try To Support Him Emotionally As Much As I Can, It’s Not So Much That You Haven’t Responded To My Posts As That You’ve Stopped Added New Posts To Threads That I’ve Posted On.
I’m A Real Person. This Isn’t A Scam Or A Fraud. Yes His Symptoms Are Unusual. But I Know They Are Real. I Spent 4 Nights In The Hosptital With Him When He Was Recovering From The Plasma Treatment.
It Sucks Bad Enough When People Who Don’t Know About Gbs Are Turning Their Back On Him. But You Guys Should Know Better. I’ll Only Reply To Posts That Include An Apology For Being So Heartless. And Don’t Act Like It Was Unintentional. I Know Better.
AnonymousJanuary 3, 2007 at 8:36 am
Do you think you will get the encouraging, kind responses which are typical of this forum and which you actually need right now by being so unreasonably angry at us? Sometimes it takes a little while before you get an answer or response because people are still asleep, working etc. when you are writing your post, but the beautiful thing is that in less than a day people always take the time to read your post and respond. First I thought I would ignore your posts, because for me, as I’m sure is the case for many others, it takes a lot of energy to write even a few sentences and I would rather spend it on something else than your negative behaviour. Sometimes weeks go by before I am able to write again on this forum and now and again I do feel a bit left out and I wished I could join in more easily. But I have learned to be thankful for the times I can come to write here and I know people here will not forget me, so it makes me angry and emotional to read your accusations. I wish you would have given us the time to express our concern for your and your husbands difficult situation.
AnonymousJanuary 3, 2007 at 9:14 am
The people that are members of this board are fighting every single day with the disease that your husband has. If you know that it is so bad for him then WHY would you post something like this to others? Some people here spend hours just typing up a short post. And also, it’s the holiday season. Maybe some people aren’t around or maybe your post was just over looked. It happens. It’s happened to me as well but I’m not going to be mean about it & demand an apology.
Sometimes people don’t reply and that HAS to be ok for you. It’s a message board. It happens. We don’t have the answers for you because we aren’t in your particular situation. I don’t think anyone here has been in jail & had GBS symptoms. Maybe I’m wrong though…I’m not sure.
I would think that if your husband in incarcerated and not receiving the proper medical care then you need to contact his attorney ASAP.
Have a good day.
AnonymousJanuary 3, 2007 at 9:48 am
[QUOTE=annie]. I’ll Only Reply To Posts That Include An Apology For Being So Heartless. And Don’t Act Like It Was Unintentional. I Know Better.[/QUOTE]
This is the first time I’ve seen you post about your husband. You said your husband was incarcerated. First, the type of institution plays a big part in the type of treatment available. Here in Florida there is only one institution set up to handle major health issues. Second, do you have a written diagnoses of GBS that can be used to help prove that your husband need prompt medical attention? This would help a lot to get the system to respond. GBS is not a common disease and it takes someone who knows what they are doing to diagnose it. I should know, it took them several years to finally figure out I had CIDP [the chronic variant of GBS]
This may sound strange, but have you talked to the prison chaplain to find out the best way to attack the problem? The chaplain knows the system and can help steer you in the right direction. Many states also have support groups for families and prisoners, they may be able to help give you some ideas. Check the web
I don’t know if any of this may help. I can understand you need to vent your frustrations. The situation is even more complex, because we don’t know if you are talking about a city, country state or Federal institution. The lower the level the harder it is to get medical help of any kind especially expensive medicines. The lower levels usually do not have anywhere near sufficient funding.
All I can add is they you and your husband will be in my prayers during this difficult time. I know it is very frustrating. There are people where who can understand your pain, because they or their loved one are going through the same illness. However, there aren’t too many who can give you helpful advice on how to get the prison system to respond. Hopefully some of the suggestions may help.
AnonymousJanuary 3, 2007 at 9:52 am
Annie, I am sure you are frustrated. I just saw your thread you posted yesterday on the GBS site. Give people time to respond, as I did.
If you look at the threads, including the ones I have started, the people reading the thread far outnumbers the people who respond. Don’t take that personally. People may not have anything to add, but can learn just from reading it.
Best of luck to your husband and you.
AnonymousJanuary 3, 2007 at 11:03 am
Anne ditto on the other’s who this is the first time to see your post. Not ignoring you but I, like yourself, have my own issues. I didn’t see in your post that your husband was incarcerated but others are referring to it. If that’s the case I do recall reading one woman’s post about her brother being in prison and contracting GBS and what she had to do to help him get treatment. You may want to do some searches on the forum to find her posts.
And to echo what others have said about timeliness of replies. Today I once again take for granted the ability to type with little to no difficulties due to GBS but there was a time when it was an arduous and painful task to type even the simplist of sentences and e-mail was a tall order. Have patiences and be kind, we are all doing the very best we can.
I wish you luck and speed in your search for answers and in your husband’s recovery.
AnonymousJanuary 3, 2007 at 12:40 pm
I responded to you in length in emails. Don’t be dissapointed in the group, the people here are the most caring people I have ever met in my life. We are spread out all over the world, it takes at least 24 hours for all members to have a chance to view all the new posts due to time differences. Also most if not all of us are dealing the very same issues that you and your husband are dealing with, albeit different circumstances. Give things a chance, and don’t be so quick to judge. You will get the support you need here. You also have my email address and you already know that I am here to help however I can. Take care, I know how hard all of this is for you, give things a chance. Take care.
AnonymousJanuary 3, 2007 at 3:03 pm
In reference to your comment that no one posts after you do, sometimes a thread has just run its course. In other words, by the time you respond to it, others have already said all there is to say on that subject. Most of us just read the posts & the responses, paying little attention to who has actually responded to the posts. I have read the forum every day for over 4 years now, but I only post if I can help someone out.
I had a severe case of CIDP & almost 5 years later, I still type with just two fingers. It does take me awhile to type a post. In all that time, I have never seen anyone angry about not getting help; sometimes it just takes a day or two. Also, most of us have never dealt with the prison system, thus, how can we help you out?
I wish you & your husband only the best, & I hope you continue to come here for help. It is truly a great group of people.
AnonymousJanuary 3, 2007 at 7:56 pm
You really hurt *my* feelings big time! I went back and read your first post and noticed you didn’t post it until almost 11:00 p.m. my time. Do you care that I was in bed asleep at that time because I had to get up and go to work this morning? Thank God Jerimy was nice enough to call me at work to help me with a problem I was having, or I’d still be there now. It’s only 7:00 p.m. here now, and I’m so exhausted I’m getting ready to go to bed. I’m sorry you feel neglected, but we all have lives too. And most of us don’t have little alarms that go off everytime a new member posts. Cut us some slack, please.
Welcome to the family by the way. Sorry you hate us all.
AnonymousJanuary 3, 2007 at 8:16 pm
We do care, but try to realize that we are not just advisors here, we are people who suffer from these syndromes too. I think many of us were trying to be normal and enjoy the holidays with family and friends. Also, very recently, we lost a very dear member and we grieved her loss.
If you post again, we can tell you what tests should have been done to diagnose GBS and what treatments need be done for. If your husband has had GBS for longer then three months, you already know this.
You are going to have to be a very demanding spokesperson for your husband and make it know that without treatments, he may get worse. It is possible that your husband may have to be transferred to another prison and in another state so that he can get infusions like IVIG’s. This will be hard on you, but it may be necessary.
Because I wanted to help you, I took the time to find a post by a member who’s brother had GBS and was in jail. She posted under the name “BigSister”. Just click on the MEMBERS LIST, located in the blue bar near top, so you can find her. This person may have the advice you need. She does not give an email, so you’ll have to send her a PRIVATE MESSAGE. I would keep sending in case she does not read her emails often.
AnonymousJanuary 4, 2007 at 12:51 am
[COLOR=”DarkOrchid”]Annie, I haven’t posted since I went into a deep depression and have been having suicidal ideation. I just happened to feel like checking in tonight and saw your lovely thread. Sorry, no apology from me. This is the greatest group of compassionate people you could ever want to find. I wrote a new thread a couple of weeks ago about my depression but the forums went down and along with it my thread. I haven’t had the energy to re-write it. I am only on here now because there is no excuse to talk to people the way you did, crisis or no crisis. As others have already said we all have our own issues to deal with. You can always count on someone responding but not in a nano-second. Remember patience is a virtue. Good luck to you and your husband. Vicki[/COLOR]
AnonymousJanuary 4, 2007 at 9:32 pm
Due to the forums glitch last week I missed your post about depression. I’m so sorry you are feeling bad. I hope you will feel better soon, and know that your forum family is here for you. If I can be of any help, please PM me, and I’ll be glad to do whatever I can.
AnonymousJanuary 4, 2007 at 11:20 pm
I am just curiuous about your posting, as I see you first posted (& probably joined) less than 2 days ago, have had numerous responses to your threads, but have not responded in turn. Some have asked questions, but you have not answered any of them.
When I was trying WW last spring, I joined their forum, but found that by the time I had put a serious post/question out there, it was on page two within about 10-20 minutes, where no one even saw the post anymore. I got so sick of people posting things like what did you have for breakfast, or I am so sick of work this afternoon, or I am so mad at my DH, that I soon gave up.
This is a serious forum, with some very knowledable people, so please respect that by responding to people who are genuinely trying to help you…
AnonymousJanuary 6, 2007 at 1:55 am
I am sorry for being so demanding on this forum to everyone. I am very frustratated. My husband was in Pinellas County Jail. I’ve spoken to the nurse, the judge, and his public defender. I’ve had to fight to get those people attention. Again, I am so sorry for taking it out on you guys. I am very frustratated. I lost my brother in the Pinellas County for severe medical neglect and now it seems like no matter what I do they’re going to hurt my husband too.
Every time the medical staff has contacted me it’s been a different story. First they say they’re waiting on the medical records. So I contact the hospital that they’re supposingly waiting on the records and the hospital tells me they faxed them back weeks ago. Then the next thing the jail nurse tells me is he’s never been diagnosed with GBS, which I know is bulls–.
Then the next message I get is that there is no treatmen for it . I’ve left several messages with his public defendedr. I wrote three letters to the judge handling the case. I’ve contacted everyone and anyone I can think of to try to get someone to take this seriously. I’m not giving up. I’m sorry for being mean, I’m just feeling like everyone thinks this is a big joke. I know you guys don’t think that way, I guess I’m just in the mode of expecting that response.
AnonymousJanuary 6, 2007 at 5:37 am
I am so glad that you decided to respond to our posts and that you came to realise we really aren’t the enemy here. I have no experience with the jail system so I can’t give you any advise, but I hope you get some help in that departement from others. Have you tried to contact “Bigsister” yet, as Liz suggested a few posts back? Like many other GBS-ers here I have bumped into doctors and therapists who didn’t take me seriously, so I can relate to your frustration and fear. Please keep posting, tell us how you and your husband are doing and feel free to vent, without taking it out on us;).
AnonymousJanuary 6, 2007 at 9:54 am
Have you tried Legal Aid [COLOR=”Red”]www.floridalegal.org[/COLOR]/. Copy and paste to your web browser. Select the directory by county. I don’t know if will help.
I’m not familiar with the law dealing with correction institution. You need some sound legal advice. Your public defender doesn’t appear to be willing or able to try and help. The Legal Aid people may be able to help you presue different avenues, such as a law suit. It looks like the county doesn’t want to or can’t provide the funding for the proper care your husband needs.
You and your husband will be in my prayers
AnonymousJanuary 6, 2007 at 3:53 pm
Please understand that we are not professional counselors, we are people who live and deal with syndromes that turn our lives up-side down, so we can get touchy by post that are demanding immediate attention. We just can’t do that, we’ll respond and try to help ASAP for us.
I don’t know how much we can help you, so many of us just don’t know how to fight the jail system, but you can come here to vent.
Don’t give up, you’ve got to find a way to prove your husband does have a chronic illness, then fight from there. We can believe you, many of us are misdiagnosed, accused of faking it or imagining it.
AnonymousJanuary 6, 2007 at 10:29 pm
I don’t think people really understand GBS unless they have had it themselves. At least I feel that from my own family members/friends. They think we are back to normal but the truth is I dont think we will ever be the same before we contacted GBS. It is still frustrating for us as recovering GBSers. Like others said when we are not on post we are just trying to live our lives. I have three teenagers at home and a husband. We have many obligations. When I’m not being a wife/mother and sometimes working part-time, I’m catching up on sleep my body needs to recover. Know we will keep you and your husband in our prayers. It is hard to get help with GBS because even the insurance companies who help pay for our help don’t get it.
AnonymousJanuary 7, 2007 at 1:09 pm
Welcome back. Apology accepted.
Now, since most of us can’t help with the legal system, if you could fill us in on some specific details about his condition, we’d be much better able to offer advice and opinions as far as GBS is concerned. Sorry if you posted details on another thread, but it’s easier to keep everything on one thread.
1.) What date did your husband begin experiencing the symptoms of GBS (numbness, tingling, paralysis, etc.)?
2.) What areas of his body did the paralysis affect (arms, legs, face, lungs, etc.), and was he on a ventilator?
3.) What date was he hospitalized?
4.) Once he was in the hospital, how long did it take to get a diagnoses?
5.) What date did he begin plasmapheresis?
6.) What are his current complaints? Is he able to eat without assistance, walk, etc.?
I’m sorry to make this seem like a homework assignment, but the more we know, the more we’ll be able to help.
AnonymousJanuary 7, 2007 at 1:36 pm
As you can see, we all have the same response. This is the first time in a week or so that I was able to get on the computer. Never think that all these people, including myself do not care about you and your husband. My prayers are with you,
AnonymousJanuary 7, 2007 at 9:11 pm
I am glad you saw the light. LOL I am sorry, you have to Laugh sometimes, If not I would be crying 24/7.
I can understand your fraustrations. A child having CIDP is more rare than an Adult. I even fight with my Mother, she says nothing is wrong with Mason. I don’t even call her everytime he is admitted to the hospital.
I have learned to be very patient. I have learned to question everything. I have learned to come hear to get a true answer.
I have great friends from here that I can call, email, or leave a message. They don’t belittle me or talk about my bad spelling.LOL The people here are walking in my shoes. They can relate. I don’t want to be walking in my shoes, but I am and I thank God I can come here and get some peace.
SOOOO enough said. Welcome and enjoy. Good Luck, and God Bless
AnonymousJanuary 8, 2007 at 1:49 am
Jacob first experienced the symptoms about 6 years ago. I’ve been with him three, so I don’t know the exact circumstances revolving that. However I do know that he was genuinely diagnosed with GB, because he won a law suit against workman’s comp. He recieved the check when I was with him. $4,000. Also I was with him when he had another reoccurence in another hospital. As far as the exact dates go, I’m working on that.
His legs go paralyzed. Completely, he can’t feel them or move them at all. His upper body has not been affected. He can move his arms, breath fine, and perform sexually. The tapping a hammer on the knee thing has been done, no response. spinal tap. Lumbar etc. I was with him during the last onset he had. He was treated like a guine pig, because the hospital he was treated at had never encountered that situation. That was in early 2004.
Again I’m trying to get the information regarding dates and other records, but that information is being convenionly being held back. Trust me, I’d be happy to complete the homework assignmnet if I had the answers. As soon as I get them, I’ll provide them to you.
AnonymousJanuary 8, 2007 at 10:55 am
It seems like the first thing you have to do is prove that your husband has GBS. If you can get to the doctor or to the hospital where your husband was diagnosed, go there and PICK UP THE PAPERS YOURSELF. Don’t wait on mail or faxes to be sent, you’ve found out what happens if you do that. I believe as his wife, you have a RIGHT to get them.
AnonymousJanuary 8, 2007 at 11:36 am
Annie, et al:
I work in a jail in Washington S tate. While I am not offended by Annie’s remarks, I feel that some degree of reality needs to be addressed.
The Pinellas Co Jail has over 3200 inmates. That is the size of a small town. Reality is, not every one in a small town is going to receive personal treatment. The jail does have over 420 medical and support staff to address the needs of the inmates, as well as a full service, 24 hour medical unit. The medical standards for jails in the US are set by a standards board and are inspected on a regular basis. Most inmates complain about their treatment, but they are meeting some fairly high standards. There are many people not in jail, and most people in third world countries who’s treatment is not as good as what criminals are getting.
The Jail Inmate Handbook is available on line. It clearly states in the handbook how to request both medical services and a notary public. As in our jail, you have to ask. We are not mind readers. We need to know what your specific concerns are. If you want two pages notarized, you need to say that. Additionally, like it or not – your husband’s treatment is being paid for by the tax payers. If you were to canvass the “man on the street” the tax payer just may think your husband should have minimum care only while he is in jail.
The hospital records are protected by the federally mandated HIPPA act. It is not the jail’s fault you cannot get your husbands records, nor is it the hospital’s fault. Don’t like it? Talk to your congressman. I can’t even get a copy of my daughter’s medica record at her university health center to turn in to my insurance company without jumping through the same hoops you are.
Annie, you said that your husband isn’t guilty of anything, that he is only in jail because of a minor PV technicality. Well, guess what? That means that he must have been guilty of his original crime, and was released prior to serving his full sentence and placed on Probation. Probation rules are very strict and one needs to adhere to them to the letter. So while he is in jail on a PV, he is not innocent of a crime.
Annie, I know that you are worried, and that you are feeling helpless and frustrated, but the bottom line is, you sound like every other complaning inmate family member. Don’t blaim the system. It’s working as well as it can. Don’t like it? Stay out of jail. If your husband has to be in jail, thank God that he is in jail in the good ol’ USA. I have toured jails in foreign counties, even first world foreign countries. This is as good as it gets.
So, now that you are totally pissed and are ready to yell and scream at me because “I’m not in your shoes, and I don’t understand” let me give you some advice.
1) Quit whining
2) Become pro-active, but in a positive way. Ask what you can do to help grease the skids, but quit putting the blaim on the jail.
3) Ask if you can volunteer. If Pinellas County is anything like where I work, the staff is always stretched to the limit.
4) When your husband gets out of jail, help keep him from violating his PV. Probation officers and the courts have little tollerance for PV offenders.
5) Quit blaining others. **** happens
Vancouver on the mighty Columbia
GBS Nov 2004
AnonymousJanuary 9, 2007 at 10:43 am
I don’t know how the HIPPA LAW works in other states, I am presuming it is a national law, your husband would have to sign a permission paper with your name on it in order to get his medical records. That is how it works in New Jersey. Both my husband and I signed those permission papers the day the HIPPA LAW took affect and we both could request medical info to be given to either one of us in case one of us became incapacitated.
So have your husband sign a HIPPA LAW permission to share medical info with anyone who he sees fit to have his med info.
When I worked for Doctors we always asked the patients if they wanted to sign one of those permission papers for their spouse or adult children to get their info.
I have just signed a new HIPPA LAW permission paper so my 3 sons have access to my medical info.
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