Without A Leg To Stand On
A year or so ago on another site in another blog, I wrote about my crippling condition and how I was coping/not coping with it. When I was thirty, I was diagnosed with arthritis in my right knee and was told to lose weight, exercise, quit smoking, and don't drink. Of course, I ignored those admonitions. I am paying for that now, at age fifty-two.
I quit drinking fourteen years ago, and quit smoking in May of this year. I have begun to slowly lose some weight. None of this has made a difference in my legs, though. They have refused to work for the last several months. My knees have become swollen, misshapen, and chronically painful. I hobble, at best. At worst, I cannot stand or walk without assistance.
Like many Americans, I am without insurance. I recently enrolled in the State of Wisconsin's version of Medicare, which is called BadgerCare. It will enable me to get some help for my legs, and other problems I am experiencing, but like so many bureaucracies, there are snarls and snafus I have to deal with that have prevented me from receiving any of the benefits of the program for now. I am trying to find a lawyer who can help me negotiate the minefield that is Social Security Disability Insurance.
Recently, I phoned the White House to express my anger at the notion that a public option was now off the table. Instead of ranting angrily, I burst into tears---something that has happened frequently of late. I cry incessantly---from the pain in my legs to the pain in my head because I am no longer capable of doing things I used to take for granted---like walking. Instead of rising enobled from this debilitating condition to become a role model for others with disabilities, I am reduced to a weeping, self-pitying, frightened woman who wonders what will become of her. The person who answered my call at the White House seemed genuinely concerned for my well-being, but I felt very much as if I was just another person in a long line of people who weren't happy with the way health care reform was moving along (or not), and unhappy with the Obama administrations efforts to make national health care a reality---as promised during his campaign. The woman who took my call seemed sympathetic, but unmoved by my tears. I wonder if this has happened to others.
I don't want sympathy. I want medical care. I want to get my knees fixed. I want to work and walk and be able to bend over and pick something up off the floor without falling over and I want to be a productive member of society again. I realize there are jobs one can do sitting down, and I have some skills that would allow me to make a living that way, except that the arthritis has spread to my right wrist and I have developed carpal. I want to have my body back so I can earn my keep. I do not want to be disabled. I have fought that idea for years, and now I cannot escape it.
My story isn't unusual. I know that. I know I'm one of millions.
One of millions without health care, hope, and the right to pursue happiness.
Jan, dear, don't feel alone and don't be overly frightened. Health care is your right and I believe it's on the way, though not as soon as you should have it. Your frustration is understandable.
Do you have family helping you with the forms and so forth? Can the condition in your legs be reversed enough for you to walk again?
Your story pulls at my heart. Thanks for having the courage to tell it.
How can I help?
August 22, 2009 2:00 PM | Reply | Permalink
And keep in mind, also, Jan, that the real problem here is with Congress, and particularly the Senate. The Administration can propose any number of things - and they have - and Congress turns it into gibberish within the week.
Then there's the complete inability of the Dems to either get a handle on the framing of the debate, or to maintain intraparty discipline enough to present a united front. The Republicans are proving better at both. This has to change.
August 22, 2009 2:32 PM | Reply | Permalink
Jan, I'm so very sorry. I have heard Naproxen (Aleve) is very good for arthritis, my gramma swore by it. You are a productive member of society, ma'am, and don't forget that.
I dunno that quitting smoking would have halted arthritis, bad things happen to the best of us. It is intolerable that such are made to suffer so that some fat cat insurance exec can ride in a private plane and eat off golden plates.
Shame on you Congress! Shame on you Senators! Do your job so we can get back to doing ours!
I am thinking of you Jan, and hoping that all the good wishes of the good people in the world finds you and gives you some peace. I hate to say things always seem darkest before the dawn, but it tends to be true.
If you can hold on, hold on.
August 22, 2009 4:22 PM | Reply | Permalink
Jan, hope this is of some benefit,
http://articles.directorym.com/Social_Security_FAQ_Wisconsin-r935297-Wisconsin.html
August 22, 2009 4:37 PM | Reply | Permalink
Jan - my heart goes out to you and I wish there were words to express how I feel about your terrible predicament. This health care issue is not going the way I believed it would and I am angry and disappointed. I really thought that Congress would be more willing to get together on some sort of bill that would come to the aid of people who are suffering like you do.
I too have vary bad arthritis in both knees and tried many remedies including medications, cortesone shots and have finally gotten relief from new injections of orthovisc. I feel so much better but I have medicare and AARP and these expensive shots were covered.
This should be something that all people who suffer from arthritis of the knees can be helped with and I will continue sending letters and emails to my congressman and senators displaying my anger and disappointment of this lousy state of affairs.
You should not have to be debilitated and should be able to live a more normal, pain free life. I pray this comes about.
August 22, 2009 5:39 PM | Reply | Permalink
What sort of arthritis, Jan? It's become a catch-all diagnosis. Spreading to your hands makes me wonder if it's rheumatoid. For just regular joint-swelling, loss of cartilage volume, joint capsule problems, a new product called Celadrin, both oral and topical is awfully helpful. Google it, and see what you think. If it sounds good to you, i will ask dick-on if he will give you his email, then maybe you can give him your address and i can send you a starter pack. We bought lots of our daily supplements and unguents and potions; we require a lot of things to keep going: Capzacin (hot pepper) roll-on, Stopain spray (peppermint with glucosamime and MSM, etc. You could give him your name and mailing address, and i could send you some.
August 22, 2009 5:47 PM | Reply | Permalink
Hi Jan - I have two comments.
The first is to sympathize with your predicament, and to hope you will find the best treatments available. For the condition you describe at your stage, it might involve surgery, but that will be a medical decision rather than something you can judge based on advice from Internet participants who don't know you. You might look at some of the legitimate web sites on this, e.g.
http://www.mayoclinic.com/health/knee-replacement/MY00091
The second is to raise a question. It appears that you qualify for Medicare, which is an excellent, government-run healthcare insurance program. Assuming you do, Medicare A is free of charge, and Medicare B involves insurance premiums negotiated by the government to be reasonable in cost. In fact, many reform proponents use Medicare as an example of what can be achieved by a system dedicated to patient welfare rather than profits.
I don't know the details of your situation, but would not Medicare ultimately be a good resource for you in finding the best achievable outcome?
August 22, 2009 6:26 PM | Reply | Permalink
Yes, fred, but there is something to be said for temporary help with safe alternative help, especially if surgery were needed later. I am not diagnosing her, but her doc may have already.
Like i said, she can check it out. Doctors do not know everything, just what they have been taught.
August 22, 2009 6:30 PM | Reply | Permalink
Jan - sorry I overlooked your stated age, which is below the federal Medicare threshhold. On the other hand, your state's "Medicare" program, which you cite, seems to be something that might apply, and I wonder whether some of the same elements might be in that program.
August 22, 2009 6:30 PM | Reply | Permalink
Here's more on exemptions from the Medicare age limit for certain individuals, and perhaps you qualify - http://www.ssa.gov/pubs/10043.html#part3
August 22, 2009 6:33 PM | Reply | Permalink
Good luck with working out the SSDI/Medicare connection: sounds like that's the ticket (or a ticket anyway.)
August 23, 2009 1:29 PM | Reply | Permalink
Thank you, everyone, for the kind words and suggestions. I have much to ponder. Bless you all.
August 22, 2009 6:31 PM | Reply | Permalink
Jan, When you get onto SSDI the rolls you will be eligible for medicare.
August 22, 2009 6:49 PM | Reply | Permalink
Jonnie is correct here.
I am at dikkday48@yahoo.com if you wish some help from Wendy.
Not here to embarrass you.
On the helathcare issue, hell I am for government sponsored one payer fits all...
Your stories, whether you write me or not, become part of a permanent record around here; substantiation that our citizens are in a bad mess, need help and will not settle for smiling scarboroughs or lyin mcconnels. ha!
Peace
August 22, 2009 7:36 PM | Reply | Permalink
Thanks, dick.
August 22, 2009 8:34 PM | Reply | Permalink
jan, thoughts with you.
August 22, 2009 8:39 PM | Reply | Permalink
Thanks for bringing your story to the fore here. We need to make these stories be what is discussed. Genuine healthcare issues, not someone's personal emotional insecurities and their obsession with being armed at all times. Although, universal healthcare might enable them to deal with those issues too!
August 23, 2009 12:49 AM | Reply | Permalink
Congratulations, Jan. Those alone are enormous accomplishments that shouldn't go unacknowledged.
It sounds like you need to find a patient advocate. You don't say if you've contacted national foundations like the Arthritis Foundation, HealthWell Foundation, the Chronic Pain Fund, TogetherRxAccess, or AARP. I certainly don't know enough about your specific situation, but organizations do exist to help people like you. I realize you are at your wits' end, but you are disabled and suffering. If you can quit drinking and smoking, you can do anything you put your mind to, so channel your frustration and anger into finding someone who can and will help you, and don't stop until you find that person.
The WH isn't going to help you, although with any luck your call will have been documented in detail. In the meantime, write down what you remember from the phone conversation and follow up with a letter to the WH, copying your reps, etc.
Here are some resources for Wisconsin, provided by UW-Madison. Universities often have research programs where you can volunteer for treatment trials.
Finally, but most important, it sounds like you are inadequately diagnosed. You were diagnosed 22 years ago and now have additional symptoms. They may be related. In any case, you need an updated and thorough evaluation to determine what is causing so much pain so that treatment can be effective.
You don't say if you've already tried and exhausted these options, so forgive the assumption that you haven't. Good luck.
August 23, 2009 9:34 AM | Reply | Permalink
Edit: Chronic Disease Fund.
August 23, 2009 10:14 AM | Reply | Permalink
Thank you from the bottom of my heart. And, thank you to all the rest of you who commented. It's people like you who have shaped my political beliefs and lead me to believe the world is still beautiful.
August 24, 2009 7:35 AM | Reply | Permalink