Some Advice

Below are excerpts from a list I found on a website regarding "National Invisible Chronic Illness Awareness Week" which I found on a very cool website, ChronicBabe.com.   I decided to post some of the list here because I know personally the difficulty of not knowing how to handle friends, or other loved ones who have chronic health conditions, or any serious health condition really. I have seen the sad reality that this causes time and again: those who end up needing a support system the most suddenly find themselves without one.  I am lucky to have been raised by a mom who simply will NOT be one of those deserters, and of course I'm living with some chronic stuff myself, and have subsequently learned about the importance of being a true friend through thick and thin. But even then I find it difficult sometimes to know what to do or what to say to be the friend that someone needs me to be.  I know that others who have silently and suddenly slipped from my life when my Dx came aren't bad people. They didn't purposefully say: what can I do to make things worse for Xine?

 

The list comes from a book: Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend which has a Christian base to it. I mention this because one thing that I have found to be inappropriate and not helpful, is for folks to tell me that I just need to pray more, or some other such nonsense that offends me and shows how little they know about me. That is NOT to say that I don't appreciate being included in other's prayers. It is in fact quite helpful to know that others are thinking positive thoughts for me, when I am not always able to myself. My only caution would be to not go full force with some of the religious suggestions unless you know for sure what religious/spiritual beliefs the person holds. Even then it can be tricky. Like # 15 says: Ask. "Would you be comfortable with having your name on a prayer list, so that others can pray for you?" Don't assume.

 

Some others that I particularly liked are:

• Understand that she lives in a constant state of making decisions for which there is no guarantee that she is making the right choice.

• Put meals in disposable containers and attach a note saying "This doesn't need to be returned."

• Add stickers to envelopes for a cheerful touch.

• Arrange for your friend's kids to have a night with your children.

• Don't make a person into a project.

• Ask, "Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?" It makes one feel good to know that her experience can offer someone else hope and that God still has a purpose for her life.

• Wash his car and put a little note inside for him to find later.
  Remember important anniversaries, both the good and the bad. No one else will.

• Ask, "Do you want company the day that you wait for the test results? I could come over for a couple of hours."

• Accept that her chronic illness may not go away. If she's accepting it, don't tell her the illness is winning and she's giving in to it

• Don't say, "Let me know if there is anything I can do." People rarely feel comfortable saying, "Yes, my laundry." Instead pick something you are willing to do and then ask her permission.

• Ask her to share her testimony at an event.

• Buy a magazine subscription for her on her favorite topic

• Plant a rosebush to view from a window.

• Just listen . . . until it hurts to not say anything. And then listen some more.

• Mop the floors.

• Buy a brightly colored umbrella as a gift.

• For a unique gift, provide brightly colored paper plates, napkins, and utensils in a gift bag with a note that says "For when you don't feel like doing dishes."

• Get her a pretty box to keep all of her notes of encouragement. Remind her to get it out and read things when she is feeling down

• Be her advocate. If you are at an event and walking/seating is an issue because of her disability, ask her if she'd like you to take care of it. If she says you can, be firm but not rude. Don't embarrass her by making accusations of discrimination or by making a scene.

• Say, "While you're in the hospital I'd be happy to take care of your pet."

• Don't tell her about your brother's niece's cousin's best friend who tried a cure for the same illness and. . . (you know the rest).

• Find out which charity is most important to her and then give a donation in her honor.

• Ask, "What are your top three indulgences?" and then spoil her soon.

• Don't tease her and call her "hop along" or "slowpoke." Comments you mean in fun can cut to the quick and destroy her spirit. Proverbs 18:14 says, "A man's spirit sustains him in sickness, but a crushed spirit who can bear?"

• Say, "I know you must need someone to just vent to occasionally. I may not fully understand how you feel, but I'm here to listen anytime."

• Ask, "What would you advise me to look for in a new doctor?"

• If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she's feeling particularly good that day, she may not want to park in the "blue space." Don't be disappointed that you'll have to walk farther.

• Don't ask, "Why can't the doctors help you?" or insinuate that it must be in her head. There are millions of people who are in pain with illnesses that do not have cures.

• Avoid having gifts be "pity gifts." Just say, "I saw these flowers and their cheerfulness reminded me of you."

• Ask, "Do you have an errand I can run for you before coming over?"

• Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it's a good day or a bad day.

• Don't make her feel guilty about things that she cannot do

• Treat her to a gift of movie rentals via postal mail through a service ($7-15 a month

  
  

 


 

ROMP

Y'all can see that I have added a new link on the sidebar to an organization that is incredibly inspiring and just downright AWESOME. ROMP, or the Range of Motion Project was co-founded by a classmate of mine from college, Eric Neufeld. Needless to say I am amazed by and so proud of the wonderfully important work that this organization and its committed volunteers are doing around the world to help facilitate independence for those who require prosthetic or orthodic devices.

So far ROMP has done work in Haiti, Guatemala, Nicaragua, Pakistan, and Ecuador.

From the website:

Mission
ROMP was founded in response to the critical shortage of orthotic and prosthetic services faced by a majority of disabled individuals in the developing and war torn world. Our purpose is to facilitate the distribution of necessary resources and training in order to serve people living with amputations and other disabilities.

Goals
Romp will begin providing no-cost prosthetic limbs, orthotic bracing, and training throughout the developing world. The initial project will be in Zacapa, Guatemala in collaboration with Hearts In Motion (HIM). Our initial goals are to:

· Increase US awareness of the lack of rehabilitative medicine throughout the world.

· Build an orthotic & prosthetic laboratory in Zacapa, attached to a rehabilitation complex.

· Assemble a team to evaluate and fabricate prosthetic limbs for amputees within Zacapa.

· Begin training local practitioners.

Vision
ROMP recognizes the hardship of living in poverty without a prosthetic or orthotic device and understands how important these, often times simple devices, are to those who do not have access to them.

In many cases, a prosthetic or orthotic device is a critical component in a disabled person's rehabilitation. With this "tool", independence, mobility and involvement in community and the socio-economic structure can become more attainable. Rehabilitation has the power to increase visibility of the disabled and awareness can change attitudes and help people see that "disability" is only as crippling as the barriers we let stand in our minds and in our world.

Together, with the help of trained prosthetists and orthotists, care givers, volunteers and generous donors, ROMP's vision of offering independence and hope to countless individuals will become a reality.

I strongly urge you to visit ROMP's website to become inspired, learn more about what they have accomplished and what they will accomplish with your support, and help make this important work possible. What more could the loved ones on you holiday shopping lists ask for?

Anger

I'm angry today. That doesn't sound like a surprising statement if you know me, but this is not the kind of anger that I usually have. I am usually angry at the world, at injustice, at ignorance etc.  Today I am angry with myself.  Usually I am just disappointed in myself, but today I am really MAD.

 

A couple of posts ago I mentioned that I was feeling well, and was doing my best to keep it that way by not overdoing it. Not doing all of the things that I so wanted to do, so that I could be responsible, and in the process keep pain and illness at bay.  Then the weekend came, along with a cold snap, the flu, and 2 days of working outside in that cold, going door to door for my job, accomplishing little to nothing except making myself hurt again. 

 

After once again silently putting myself through the hell of withdrawl from pain medicines, I was forced to start taking them again (which means I will be forced to endure withdrawl again). And for what? All because I couldn't stand up for myself and be the advocate that I would so willingly be for someone else.  I don't want to seem incompetent, I am already battling perception issues that I don't know how to control, so I kept my mouth shut and didn't say what needed to be said: This is stupid, this isn't helping this organization, this is going to send me into a spiral of gimpiness that will take....who knows how long to recover from, and will leave me with nothing left for my family who in this struggle always gets the short end of the stick.  Why is it so hard for me to say: I can't do this.  I guess because in my mind, and in my life I have always been able to do whatever. I can push myself through anything, despite how grueling.  It doesn't mean that I won't suffer for doing it, but I can do it. I guess the hard part isn't me saying that I can't do something, but rather that I shouldn't do something.

 

That is why I am mad. I know better, I am smarter than this, I shouldn't care what people think of me by this point. I don't need to be the stoic soldier 100% of the time.  It would be stupid for me to try, because it's just not possible. I'm pushing myself to ruin and for what?!?! The hope that people won't see how much I suffer?  The hope that I will be seen as "normal" in other people's eyes if I just buck up?  Why do I associate suffering with weakness?  And why do I make that association only with myself, and not with others?  If I keep down this road, my self worth will be down the drain right along with my health. Not cool.

Shake It for AIDS

Today is World AIDS day. Get up and BOOGEY, then check out the Dance 4 Life campaign.

Medicaid "Flexibility"

Part of Bush's plan to "reform" Medicaid is to give states more flexibility in how they administer the program in their states. This could be good, let states try things out that they know will work for their people: like allowing Medicaid to pay for Home and Community Based Services as opposed to institutionalizing everyone they can; or it could be disastrous, and end up killing the basics of the program.

One of the more recent examples of this is what is happening in West Virgina. Under the auspices of "incentivisimg" prevention and health maintenance, the Medicaid program in West Virgina has begun to implement a program which would require recipients to sign a pledge "that they will do their best to stay healthy" in order to continue to receive certain health benefits from their coverage.

The incentive effort, the first of its kind, received quick approval last summer from the Bush administration, which is encouraging states to experiment with "personal responsibility" as a chief principle of their Medicaid programs.

Those signing and abiding by the agreement (or their children, who account for a majority of Medicaid patients here) will receive "enhanced benefits" including mental health counseling, long-term diabetes management and cardiac rehabilitation, and prescription drugs and home health visits as needed, as well as antismoking and antiobesity classes.

In future years, those who comply fully will get further benefits ("like a Marriott rewards plan," Ms. Atkins said), their nature to be determined but perhaps including orthodontics or other dental services.

OOOO aren't you fancy? Giving out the rewards of dental care. Now that's an "extra" for you! And mental health benefits, cardiac rehab? Cadillac coverage if I've ever seen it. And how exactly does taking away some one's long term diabetes management services mean that you are punishing them for not taking care to prevent worse problems? Of course none of this takes into account the lack of transportation/child care issues etc. that many people face.

And then there are two other states that I would like to discuss when it comes to Medicaid "flexibility." First off is California. If you read my blog ever, you know that an issue of contention with me is the new federal Medicaid citizenship verification requirements that will actually do more to hurt citizens than non-citizens, and leave newborns out in the cold. California, along with about 20 other states have postponed implementation of the law until they can figure out what kind of guidance to give to Counties on the issue, but say that they are showing a "good faith effort" to comply with the federal regs. However, because they haven't yet gone forward gung ho, patients be damned, they are faced with the possibility of audits and loss of FMAP monies (federal Medicaid $). Never mind that when someone in CA applies for Medicaid, their Social Security #s are automatically checked with the federal government, verifying their citizenship. Not good enough. Forget flexibility, its ridiculous rigidity that we are witnessing here.

Meanwhile, the little old Federal Medicaid Commission has some suggestions on this whole issue of flexibility. Of course, flexibility in this sense means, how can we spend less money, even if it means providing less services, and shittier health care to recipients? Like enrolling the people with the most complex health cases (so called dual eligibles) into HMOs that we all learned to love. Shit, in Ohio mandatory enrollment in Medicaid HMOs for the Aged Blind and Disabled populations are going to happen starting this month (we are already mandatory managed care for covered families and children, the majority of Medicaid recipients, who are also the simplest to manage, and we have done a shitty job doing that to date). I will keep my eye out to see how flexible everyone who has complex health histories feel about being told by an HMO what medicines they must try and in what order, what procedures are and aren't necessary, and what health care provider they can or can't go to. This is sure to go over swimmingly.

I guess the point of this post is that when the government talks about flexibility in Medicaid, it means the flexibility to keep people away from the care they need, and the inflexibility to get as much care to folks as needed. That's my take on it anyways.

I Couldn't Help Myself

And besides, WalMart is so much FUN to bash, and even more fun to hear them try to justify their idocy after the fact.

 

Thanks to the DisablityNation Podcast for alerting me to this.

 

A local woman is firing back after she says her daughter was mistreated at the Albany Wal-Mart while carrying her service dog.

Now, Wal-Mart is admitting it was wrong, and is taking steps to change; that could be because the law seems to be on the customer's side.