Current Events and Forthcoming Appointments

Life goes on, as it is wont to do. Sun rises, sun sets; minutes, hours and then days past.

My life tends to blur at the edges. Without a set schedule, going to bed and then getting up whenever I want to is decidedly a luxury. The only downside of this arrangement is that I lose track of the days and am always vaguely amazed that the weekend has come around again. If it weren’t for our appointments, I would never know what day it was. I keep the date on my computer specifically so that I can determine day of the week as well as its numerical annotation for the month.

We have had relatively few appointments this past month. I went to the acupuncturist, my psychologist, and for some testing. (More on that later.) Beloved had a couple of extra appointments, but his main obligations are group therapy followed by his game night. He is the God of the dungeons, the Game Master (or Dungeon Master, depending on who you ask) for a group of 8-9 folks who gather to play his game of make believe. Everyone seems to be having a good time–and it’s really good for him. He needs the activity to give him something to do. He has to prepare the next session’s events during the week. He will print out the cards that show the items the group can find or buy. He has a book that has a rough sketch of each encounter, but he works with it, modifying and adding as needed. This game has also given him a circle of friends…which the gods know is not the easiest thing to do when finances are limited.

I continue to be very grateful for the people I interact and communicate with on Facebook. I belong to several groups and have Pages of my own that I share with the world at large. So between the groups and my own timeline, I stay pretty well up to date on current events and world happenings. Of course the major subject these days is the upcoming election. I will be so glad when it’s over. The anxiety of not knowing who will be the President is a real and bothersome thing for me. If the GOP candidate wins, Beloved and I are not in a position to ignore the consequences of his campaign promises. Any substantive change to taxes, Federally funded social services and the economy in general could be catastrophic for us. Like so many Americans, we live on the verge of poverty. We are both fortunate to have healthcare. Beloved is on Medicare because of his disability and I get mine from the Veteran’s Administration. Neither of us can live anything resembling a meaningful life without the medications we require. If they become too expensive for us, our quality of life will disintegrate. I have enough things to worry about without the political uproar…less than 40 days and the question will be answered. Now if I can just keep my head together.

I’m going to go through my various diagnoses–bear with me if you’ve seen this list before. I have as a major diagnosis, fibromyalgia; I also have degenerative arthritis specifically in my spine, in two main spots: the lumbar part (right where the waist twists, where you bend over, near the kidneys) and the worst example of this disease in the neck, where 2 of my discs have completely disappeared. I have some other minor physical issues: asthma, GERD, IBD. that sort of thing. I also have clinical depression and a stress-anxiety disorder. Both of them interfere with me almost more than the physical problems. Depression has been a pretty constant companion for years, although untreated until 4-5 years ago. The stress-anxiety disorder is rather new and really bothersome to me. I can no longer be among large groups, any place with a lot of noise, or lots of children running around being loud. It overloads my brain, so to speak–and I begin to freak out and cry. The irony of this is that I used to be out with large groups of people, with lots of noise and children running around and none of it bothered me “back then”.

I also tire easily, but that’s more or less to be expected with the decrease in activity and the pain and then the meds for the pain. But life isn’t all bad–it’s worse than it was, but I’d still rather be living this life than being alone. I can’t imagine being alive without Beloved being with me. I do think that part of my unexpected trip down the road of disability stems from that while I was still working, still being the only one paying my bills, I was pushing through signs of the upcoming storm–but when I found Beloved, a part of my mind said I could relax and not worry about the roof or the food and then, bingo!, there I was…busted and no warranty.

The VA has been amazing about taking care of me. I’m beyond grateful for them. I cannot imagine having to deal with Medicare (MediCal, they call it here) with all the things I have needed and the meds I take. I know that I would not be on morphine to deal with the pain–the public healthcare does not give out opiates. And I can’t imagine life without them.

So I think I mentioned in my last blog that I had gotten a new pain–and the X-rays verified an impingement in my right hip. I also think I told you that when I finished getting my neck MRI, the technician pulled me out of the machine and for some reason, I’m not sure what, the table dropped about 2-3 inches–and caught me right across the middle of the back. I think that has done something to that impinged hip, since the pain is worse since that day. I go see my PCP on Monday and we’ll talk about it. I’m due to have an MRI for my hip within this month, so we’ll be able to compare that to the X-rays and see if there is anything worse.

In the meantime, after my last visit to the doctor and based upon our discussion, I have been measured and trained for my new form of transportation. I am going into an electric wheelchair. I wanted the ease of a joystick rather than having to reach out and manage the mobility scooter. That got tiring and painful, using the parts of my body that hurt the most. I also decided that I’d rather save the energy that I currently use up walking in the house for other things, like being able to do more complicated cooking. And with the hip hurting, I am really sure that this is a good thing. I’m not upset about it and maybe I should be, but I have always figured I end up in a wheelchair.

The occupational therapist and I think the physical therapist–anyways, 2 people from the VA clinic came to the house last Thursday and brought a “training” wheelchair. I did a little driving around, learned how to manage the curb cuts (where a driveway goes out into the street) and seeing how I’d manage in the house. I could get into the bathroom, but not back out…not surprising considering its layout. They measured–our van’s back hatch, fully open. They got the numbers off of the crane lift I already have to ascertain the weight capacity of it. They measured me, to see how high my foot support had to be, which chair would work the best for my ass and back. Then we talked about accessories! I don’t know for sure what will or will not be added as extra, but I asked for a visibility flag, a backpack that fits on hooks behind me on the back of the chair (and the hooks, of course); if there’s a lap desk, I want one. I also got to pick out 2 colors–so I might get a purple wheelchair!!! If not, then it will be red. So the 2 therapists will fill out and submit the paperwork, and it begins its travels through approval and procurement–and then it will be built just for me. So I’m looking at about 2-3 months before it shows up. Of course I’m hoping for sooner rather than later, since I sure could be using it now. Until it arrives, I will limp around the house.

I have also gotten my shower bench! YAY! and a gel pad for the scooter (which will go in the wheelchair in its time) and a clothing assistance device—basically a dowel stick with a cup hook on one end and a larger hook on the other. I’m supposed to use it to help pull up pants, get sweaters on, and so forth. So far, I’ve used it to turn off or on the overhead light. LOL

I do admit that while I’m not unduly sad at going into the wheelchair, it is a reminder that not only am I already disabled, but that I’m not going to get better–and may get worse. A person in a wheelchair is very often not even seen, since they are below the average eye level. People treat the handicapped very differently than the able-bodied and not always in a good way. The folks around here are amazingly kind–but there is some personal chagrin when someone who is obviously in their 70’s asks me if they can help. It will be interesting–and educating–to see the difference between being in the mobility scooter and in a wheelchair, in how I am treated and what unimagined things may happen. But I do know that if there’s a real problem, it’s theirs and not mine. I do what I have to do, in order to have some semblance of a life. And if that means riding everywhere, then so be it.

Thank you for letting me share. Peace and blessings to you all!

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The Politics of Fibromyalgia

Before I begin, it is important to know that I have always been willing to talk about religion or sex with anyone, at great length.  But politics?  I thought it was boring, and almost more importantly, I NEVER told anyone who I had voted for, figuring that was between me and the lever I pulled.  Part of this may have been the fact that for years I was a dutiful but woefully uninformed voter, performing my civic duty because it was a part of my American freedoms.

That has changed.  I am married to a political beast, someone who follows the politics and knows the issues.  And feels that I should also.  Damn.

So what does this have to do with my fibromylgia?   Quite a lot actually.

Let’s step back to 2008, when our only choices were “the black man” and John McCain, who I would have been okay with, but he is old and could die in office and his running mate?  Is that crazy woman from Alaska.  You betcha.  Being uninformed but dutiful, I chose what I perceived to be the lesser of two evils.  I strongly support the NOTA: None of the Above option for voting, even as I realize that it won’t work in this country.  But having to pick one of two, I did.  And you’ll notice that I’m still being a little cagey, not coming right out and saying it.  Let’s see if I can: I voted for Barack Obama in 2008.  Not because I believed in him, or his plans…but because frankly, I figured someone would assassinate him and Joe Biden was an acceptable replacement.  Don’t be horrified, other people voted for reasons just as poor, all through the years of our country’s existence.  At least that’s slightly better than I voted that way because my husband told me to.

In 2008, I did not know my Beloved and was not diagnosed with fibro yet.  As I said then, and still believe today, I had nothing but admiration for a man who so willingly drew a bull’s eye on himself–and his wife and daughters.  I knew then that he had strong courage and the (apparent) conviction of his actions to so obviously put himself in harm’s way.  There are too many in our country who thought he should be dead, who still wish he would die.  For being black.  SHAME ON YOU!  I acknowledged the uniqueness of his color in the parade of Presidents, but I never thought it made him ineligible for the position, nor somehow prevented him from doing at least as good a job as anyone of them ever had.

I’m afraid that my opinion of politicians has never been very high.  Too many of them are “professional politicians” which I consider to be an oxymoron.  I believe you should have had a REAL job, one that doesn’t involve voters, or lobbyists, or government at all, BEFORE you take any office and try to run the city/county/state/country.  How can you know what the “common people” want, if you’ve never been one?  I have also always had problems with the rich kids buying their way into government (at any level) like it’s a game they play, like being CEO of Daddy’s company isn’t enough, so they have to be a Senator…or President.  Or the rich daddy buying the path for Junior to be groomed and carefully placed, carefully mentored up into being a Senator … Governor … or President.  Too, too many politicians are lawyers.  I hold with Shakespeare: “First, kill all the lawyers.”  Why do they become lawyers?  So that they will better know how to get around the loopholes that the lawyers who made the laws left for their own kind to abuse.

Anyway.  You get the picture of my views on the political scenery in America.  But you should also know that I have lived overseas–in a war zone, in a country with an absolute monarch, in a country with a dictator, in a country with socialist democracy.  And I’ve always been glad to come home, back to the US of A, to America.  I still think it’s the best thing going, government-wise, than so many alternatives.  I am a patriot, I believe in my country, for better or worse.  I served in the military and have a son who is fourth generation military service…we are proud to be Americans.

Back to the fibro part of this.  So I meet Beloved, we have a whirlwind romance, get married…and get sick.  Both of us.  If you’ve been reading my blog, you know that we’ve been ill for almost 2 years now, in differing amounts and degrees of the word.  Sometimes, I’m the one in worse shape and sometimes, he is–fortunately, we don’t seem to cycle through our very bad phases together, so that at least we can take care of each other.  I have been out of work since January (and fired when my FMLA ran out in March); he hasn’t been to work since February and is on “personal medical leave” which means he’s an unpaid employee who still has (thank all the gods!) health insurance.  My short term disability benefits were our only income until they expired at the end of July.  I am still waiting for the processing (and please, all gods!) and approval for my long term disability benefits.  The time frame on that is a minimum of 4 more weeks from today.

We have retained the services of a lawyer (not ALL of them are bad)…and have applied for Social Security Disability Insurance (SSDI).  Approval time: 4 months minimum for Beloved, probably not less than a year, possibly TWO for me.  We have also applied for short term income assistance from the Social Security Administration (SSI) which takes 60 to 90 days to be processed.  We are going to apply for food stamps (SNAP) once we sell (cheap) his non-functioning and unused BUT an asset of a truck.  Anyone want a 98 Ford Explorer that need about $1000 worth of work?  Its Blue Book value isn’t enough to pay for the repairs.  Sigh.  I still owe on my car, but it’s also still considered an asset.  And they don’t give SNAP (don’t give a snap?) if you have assets.  Sell the cars and then you can buy food.  But we can’t get to the store to buy it…never mind, that becomes too much like the old song about the hole in the bucket.

Fibro.  Yeah.  No income.  No ability to work.  And the current economic reality is that it would take a while to get a job, even if we were applying.  Neither of us is capable of doing the job that our skill sets cover due to our disabilities.  (And side note here: I am NOT disabled, I HAVE a disability.  Important distinction for the mind to make.)  I cannot, for the life of me, think of a job that will let me come in when I wake up, no matter what time that is, work for an hour or so, maybe as much as 3, and then go take a nap for 3 to 6 hours and then come back to work for another 2-3 hours.  Will let me take off whenever I need to go to the doctors, or when the weather makes me unable to function, or when I’m just wandering in my fibro fog.  And pay a living wage.  If you know of one, comment here so that I can go find it.

So what are the politics of fibro?  Applying for social services that the Republicans want to cut or destroy completely.  Relying, heavily, at least through February 2013 when his leave expires, on medical insurance to cover the cost of–at a very bare minimum, if they didn’t pay for the fibro meds too–my pain pills so that I can have some quality of life.  Not to mention the doctors, the medical equipment that helps my (wrist splints, a cane, ankle braces…and the possibility of a wheelchair and or scooter).   The distinct possibility that both of us will be on Medicare (as part of SSDI) with Medicaid paying for the things that Medicare doesn’t cover–and again, the Republicans want to scrap the programs.  The need for a vehicle that is well made, well protected–and gets better gas mileage than my beloved purple PT Cruiser, checking in at about 20 MPG, 23 or so highway.  And that need includes such invisible things as a lower price because it’s made here and we don’t have to pay for the transportation costs from Japan or Germany.

We need government services, we need government help.  We aren’t “welfare abusers” who are looking for a free ride, who will take advantage of our food stamps to sell them for drugs or whatever else.  We have both worked hard for years and now, being ill, prefer not to become an onerous burden either to our children or to our parents.  We also prefer not to live in the street.

I refused to watch much of the RNC.  Stupidity and lies just make me angry.  Maybe that’s why I haven’t been involved in politics before.  But with the increasing attempts by the Republicans to take America back to the 1950’s, with Dad being the sole breadwinner and Mom cooking the bread…I have begun to listen.  I recognize that the attacks on women’s reproductive rights are NOT the main issue; it’s a symptom of that greater problem, putting women back into the kitchen and shutting them up–and shutting them out.  It’s about denying half, HALF of our population, basic human rights.  It’s the same old story with women cast as the villain this time instead of “The Black Man”.

“We hold these truths to be self-evident, that all (BEINGS) are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness..”  What if a woman’s idea of happiness is to be a CEO?  A firefighter?  A fighter pilot?  A mother who stays at home because she CHOOSES to?  How does it serve our country to deny anyone the right to pursue their dream, whatever it may be?  Who are you to decide that someone else should not have the same rights as you enjoy?  I don’t care who you are; neither money nor position nor gender, not who your family is or was, not what your religion says is right, NOTHING gives you the power to remove another’s choices.  Or to reduce or remove their right to basic healthcare, a home, security from the fear of being poverty-stricken and ill, to remove their hope.

I didn’t watch a lot of the DNC.  But I did watch Mrs. Obama’s speech; Mr. Clinton’s speech and then, Mr. Obama’s speech.  One of the things I have learned over the past 4 years is that Barack loves Michelle.  There is NO doubt in my mind.  They touch, freely and often, even in the public eye.  They are glad to see each other and certainly have each other’s back.  Just watch them.  And their girls adore both of them, which is reciprocated.  Most of the married politicians I have watched look uncomfortable with each other and any touching is for photo ops and as limited as possible.  (Hate to say it, but Bill and Hillary come to mind.)  There is an honesty in that relationship that speaks well of the state of their marriage.  He wouldn’t cheat on her not just because he loves her, but because she would kick his ass.

I appreciated her talking about their life together, how it started–even as I recognize the political machinations of “we’re just like you, we started out poor” to appeal to the mobs.  On the other hand, Mr. Romney can’t say that, unless he’s going to lie some more.  And his wife always manages to look like she smells dog poo on your shoes.  And I’m sorry, but you just DON’T wear a $1000 t shirt and try to pretend that you’re just “one of the people”.

So Michelle Obama talked eloquently (she’s a lawyer, too, remember?) and yet her emotions were real, she was not just reading words off the teleprompter.  She loves her husband and she believes in him–and in what he’s doing.  Which makes me believe that they had a lot of late night in bed conversations about him becoming President — and that it was as much her choice as his.

Bill Clinton spoke the truth.  I could be a cynic and say it was for the first time ever, because when he was in office I knew that he did was politically expedient, not necessarily what was right.  But it was a most formidable rebuttal to the Republican’s accusations, lies and distortions.  Now I know that there was also the same level of political spin, but why lie when the truth is a much more worthwhile response?  And Mr. Clinton is a powerful, motivating speaker.  A very successful keynote speech, directly addressing the issues the Republicans would have you believe that Mr. Obama has been failing at.

I was glad that Michelle got to introduce her husband when it was his turn to speak.  And did you notice the hug and her telling him “You’ll do great”?

But it wasn’t his speech, or Mr. Clinton’s, or even Michelle’s, that has solidified my choice for President.  It was the contrast between those two conventions.  RNC was mostly, almost totally a white audience, many of them elderly or (apparently) not a means because the clothing was…shall we say, not dressy?  Clean jeans do not a dressy outfit make, unless of course that’s the very best you can do.  Everyone looked angry or unhappy.

The candidates and their wives looked like they wanted to be almost anywhere else…and the men LIED.  If you can’t convince someone to vote for you based on what you’re going to do, I guess you have to lie about your opponent.  Oh, and if you’re not going to tell us what you plan on doing in the White House, should you be elected…that makes my Mom radar go off.  It’s Little Johnny, asking Mom for her sheets and some pans, some cookies and clothespins–and when she asks why, he won’t tell her.  She has to discover later, for herself, that he’s built an elaborate trap and has an angry cat scratching through her sheets trying to get out.  What is it that you’re going to do, that you can’t tell me ahead of time?  Must be something bad for me.

Even watching the RNC over my shoulder as Beloved gather intel against them made me angry.  The whole thing, the expressions on faces, the tone (and the lies, dear gods, the lies) gave off an emotional feeling of anger and bitter resentment.

So I watched more of the DNC.  An audience that was as diverse as our nation truly is.  I saw signs for this or that “for Obama”–Brazilians, Latinos, and Muslim Americans.  I saw old and young, and the overall clothing level was…not jeans and t shirts (not even $1000 ones).  People dressed like they cared where they were.  The audience looked happy, not angry.  People were excited, hopeful…glad to be there, believing in this choice rather than voting for Romney just to be voting against the Black Man in the White House.

And the clincher for me was the language of each party.  Republicans are very much “us versus them”…”we’ve got to get ours” and “you’re on your own” (because if you’re poor, it was a choice and too bad).  Republicans want to divide, want to keep us separate, want to go back to the Man on top and everyone else back in “their place” which is not equal to The Man.  And if you think that money is not a huge part of this for them, just Google “Koch Brothers” and be appalled.  There isn’t enough room in this blog for me to talk about them, but you need to know what they are doing.  A great deal of the Republican plans are actually THEIRS.  This is two old, white men, trying to destroy our country so that they can make another billion.  Sigh.

Let’s go to the language of the DNC.  “We are in this together”.  “YOU made this”.  “We’ve come part of the way, and have more to go and we can do it united”.  Yes, the community organizer is EXACTLY what we need in the White House.  America is not you and me and him and her–it’s US.  Yeah, it’s US!  That’s part of our name and it should be our guiding thought for our government.  The speeches at the DNC did not rely on grandiose rhetoric and empty meaningless phrases; they talked specifically about the things that we care about.  Healthcare, social services, jobs here at home instead of outsourcing.  Mr. Obama admitted and addressed the fact that while we have made progress, there are still those out in our country who haven’t seen any benefit–but that if WE are strong, if WE stand UNITED, WE can continue on this path, to bring America back to the power and prestige she used to have.

He doesn’t want the same old answers to our problems.  Einstein said that doing the same thing over and over and expecting a different result was a sign of insanity.  Well, the Republicans, by that measure, are insane.  Or as Mr. Clinton said, “We left him a total mess, he hasn’t cleaned it up fast enough, so fire him and put us back in.”  That just won’t work.  We need different answers, and Mr. Obama has some of them.  Not all, no one can do that–but he’s got enough new ideas that it’s worth following him.  He doesn’t deny that we have a long way to go, but as he said, it took a while to get where we are and that’s not going to change overnight.

I listened to him and I heard that he has a plan–and what it was.  The Republicans tell us to “wait until after the election” to find out what they plan on doing for the nation.  It’s probably an angry cat, trying to scratch its way out of the restraining sheets.

So what does my vote have to do with my fibromyalgia?  It’s in my own self interest to vote for someone who will ensure that I get my SSDI for years, who will make healthcare possible for me because I need it.  But I am a patriot and I will also be voting for the candidate who believes in America, believes in a strong, UNITED STATES of America, who is a community organizer at the national level.  I will vote for the man who is inclusive, who agrees that people who love each other should be able to marry, regardless of their gender; who wants to make the US a manufacturing nation again, instead of a service economy, who wants to stop outsourcing jobs and wants to train workers for the new jobs that are coming.  I want a strong country, I NEED a strong country so that I can continue to live in the land that I love–and still have food and medication.

Final note: you don’t have to agree with me.  I don’t expect you to.  But I do expect you to vote in November.  And if you do agree with me, it’s even more important that your voice is heard, that your vote is added to the total count because otherwise, we’re headed for a country that will fall apart in a war between those who have more money than they could ever spend and those who have no money at all.  And I don’t want my country to die that kind of ignoble, useless, wasteful death just because some old white guys think billions of dollars isn’t enough for them and they want more.

VOTE!

And, as always, Namaste!