We are in the midst of still more medical drama. :(
[Digression: As a courtesy, I did first get permission from OH to share this publicly. I have a tendency toward 'diarrhea of the mouth' and sometimes even blurt without a filter. Mea culpa. And here's my New Year's resolution: although his health issues do affect me, and thus are within the realm of my adventures with M.S., I will be more protective of his privacy. ]
He had a nerve conduction test last week, just before the holiday.
We assumed it was just to verify that the progressive loss of feeling in his legs was due to the chronic degeneration of his spine. This was a known issue and we had always assumed his widespread pain was due to the slowly contracting disks pressing on the spinal nerves.
He was dejected that this doctor had sat him down and told him he had become too messed up now, with multiple chronic health conditions, and that he was not comfortable to do any more. He was resigning himself to spinal fusion and had been referred to a team at UCSF by his long-term spinal doctor.
So we planned to meet with UCSF in the new year. First, though, his General Practitioner (GP) [Another digression: he calls her the 'quarter-back' because she leads the team, i.e., coordinates his care] wanted to make absolutely sure that his loss of feeling was not neurological. She set him up with an appointment with a neurologist to take the test.
Afterward, he sat down with OH and told him sadly that he was fairly certain that he, in fact, had the disease Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and as far as he could tell from his medical history, had actually had it for at least fifteen years. The findings stunned him.
Characterized by progressive decline in function and marked by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers, central to the understanding of M.S. as well) of the peripheral nerves, this seems, at last, to explain his myriad of symptoms: occasional tremors (described to him as the result of 'colonic jerks'), paralyzed bowel (reported as 'sluggish bowel'), and this perpetual pain, increasingly in his joints.
We are waiting for his appointment with his GP when we will go over the voluminous report of the neurologist, essentially getting a second opinion, and create a 'game plan.' The neurologist wants him to get a spinal tap and then start IV infusions of immunoglobulin, the current treatment of early-stage CIDP. Since this appears to be more advanced, it is not clear whether this will still help.
We were always under the impression that his biological mother had Amyotrophic Lateral Sclerosis (ALS) (aka Lou Gehrig's Disease). She died of complications when he was 16; her doctors were always surprised that she way outlived estimates.
Now I'm wondering if she, in fact, had CIDP. I'm wondering when the disease was formally recognized--if doctors at the time only recognized a few diagnoses so had to settle on ALS. And I'm obviously very interested to hear about current treatments.
Of course, his spine is still collapsing but I'm assuming it has moved off the front burner for now.
His appointment is in two days, the morning of New Year's Eve. I feel like I am holding my breath until then. I don't yet know how I feel about this.
You may remember that the contractor we got to add a second story to the house fled before the job was finished.
So OH has become the craigslist master, finding free stuff in the ads that he needs to finish construction on our house. Not just bay windows, but hardwood doors, a complete closet system, even lumber.
And one of the things he recently found for free is a wheelchair. It doesn't have its footrests, but when the humanitarian who was offering 4 free, used wheelchairs learned that I have M.S., he told OH that he would reserve the best one for me.
Ever since we went to Bellingham and used the borrowed wheelchair, I have realized how useful a wheelchair is to accommodate us together. While I do have my scooter, a wheelchair allows OH to stabilize himself while pushing me.
When I was diagnosed in 1991, I was told to go home and start preparing to be in a chair soon. I even saved some ratty Chuck Taylor Converse hi-tops to wear while in the wheelchair so that people wouldn't see me and feel pity, that everyone would know I used to be able to walk.
But as time went by, I stopped waiting for the possibility. And I believed what the doctor told me in 1991, that I could assume the severity and progression of my disease could be gauged by the initial five years after my diagnosis. Obviously wrong.
Now the wheelchair is folded up in the living room corner, calling to me. I'm always aware and worried when I am hobbling around that I will fall down. It's tempting to know that I could be less stressed about it by sitting down.
The author Nancy Mairs who chronicles her M.S. in books like Waist-High in the World: A Life Among the Nondisabled recounts that she had a serious fall on her head then decided she would "give up walking" after she "had another such mishap."
However I don't want to "give in" to the deterioration prematurely. And "sitting on your ass" is synonymous for being lazy. So how will I know when it's time?
Speaking of friends, I had my CE gang over this week (they decided they wanted to be called C.L.E. but I've always called them my CE gang based on the college department where we all worked 20+ years ago.)
We have been meeting regularly all this time, I'll say quarterly, as we have graduated, switched jobs, gotten married, had children.
They've seen my mobility decline but it's just one of the updates we share when we go around the room and report on our current lives.
I told them that I have this blog now that I can't write in a journal anymore but that I have turned off the comments option because, well there's really not much you can say when you read about my continuing deterioration.
Uh, I'm sorry? This stinks? Yes, it does. It always does.
Some friends came last Saturday to help clear out the backyard. As I write this, I notice I am not using personal pronouns. To help us. Clear out our backyard.
This is telling: I feel embarrassed that I need help, much less that we do.
Also, OH and The Pie Lady have had a falling out. I'm determined not to enter the fray, but the result of this is that she no longer comes over to take Buddy out with her two dogs for a walk.
One of her dogs excitedly barks as part of her routine to prepare for a walk. Buddy had gotten used to keying in on that bark as his signal that they were all coming over to get him.
He still races to the door when he hears it and sulks when he realizes she's not coming. I guess this is the danger of living in Mayberry.
Our budget is tight, but we both agree that our priority always is to continue to meet our monthly obligations. Whenever we have decided to, or had to, go into debt, making our regular payments towards it is of paramount importance.
Sometimes when I hear fiscal conservatives (like oh, say OH's brothers) complaining that the sick or unemployed are just wanting a handout, happily living on "the dole," it makes me mad.
While there may be some who are taking advantage of the system, I venture that they are a small minority, that there are many more, like OH, who get knocked down unexpectedly. A proud man, his only option to continue to contribute to the costs of our household was to apply and be approved for social security disability income (SSDI) payments.
But rather than being pleased at not having to work, he feels somewhat emasculated by not being able to work. All his life he has done physically challenging labor. Then his body gave out.
To be fair, he did pay into the system all his working life. That's the SSDI tax that comes out of our paychecks. And as a country we have agreed that this is a safety net that we all hope we never need. It's for the worst-case scenario. So now that he needs it, we are grateful for the payments he gets.
OK, I'm climbing down off my soap-box now.
What I started to say is that our budget is tight. So when we got a notification that looked like it came from the mortgage company and said that we had been pre-approved to have our mortgage rate lowered, and knowing that mortgage companies were being encouraged to do so, I called.
It turned out not to be the mortgage company, but a debt-reduction company. I listened to their pitch, asked a few questions and became convinced that this might work for us: my mortgage is currently a 30-year fixed mortgage at 6.25%. The representative I talked to said they would work to negotiate the rate down, maybe as low as 3%.
I would keep my same mortgage, so the account number would remain the same, and since I'd been paying an extra $100 a month towards the principal, we are already ahead of schedule for paying it off. If they are able to negotiate the interest rate lower, we'd be able to increase the extra we are paying toward principal each month.
Then the representative described their program for reducing credit card debt. My impression was that as part of this program the company was also going to pay off our cards and take on the loan that we would continue to pay off to them but at a lower interest rate.
Now I'm pretty savvy about my debt. (Obviously not savvy enough to stay out of it, but still…) And OH used to have his own business. I reasoned that our credit report would show that we had paid them off and our scores would go even higher.
But we also know that if it looks too good to be true, it most likely is.
Eventually OH got on the call and the representative passed the phone to the company chief. It turned out that their strategy was no different than those other guys: to have us stop making payments altogether, go into default and get turned over to a collection agency.
They maintained that would give them the necessary leverage to use on the credit card companies. And our credit reports would reflect that we defaulted on two of our biggest debts.
This is completely unacceptable to us. We are not looking for the principal to be reduced: we are in agreement that we took on this debt intending to pay it off. All of it. In the end we all agreed that the debt-reduction program would NOT be useful for us.
We did decide to go ahead and have them negotiate a lower interest rate for the mortgage. Even though we could approach the mortgage company and attempt to do it ourselves, we thought that having a debt-reduction company do it might make the mortgage company more amenable to the proposal.
Let them think that if they won't negotiate, we might have to resort to defaulting. That WOULD be useful for us.
My upstairs space, where I work and sleep, now sports an expansive window space because OH had to convert the bay window he had salvaged from the house in Napa into three flat panels.
Nicely done, like making the proverbial lemonade out of lemons. But unfortunately, the windows are still without curtains!
We are also in a downhill lot, so the street-level in front of us is actually higher than the first floor. People driving by can easily see right into the second story.
Consequently, I always try to stay as close to the opposite wall--that is, furthest away from the windows--when moving half-clothed from bathroom to closet.
My thought is that even though I
am in full view from the street, I may not be so conspicuous hugging the back
wall. ["You can't see me: I'm invisible, see?"]
Sometimes when I have forgotten to bring a change of clothes for after the shower, I will wrap a towel around me before making the trek.
Forget walking around naked. Not that I long to do that, but someday I'd like to have the option! :)
Still angry about the contentious town hall meeting, OH decided to write a letter to express what he didn't get a chance to say at the meeting. He spent the next day hunched over the computer keyboard crafting a letter to the congresswoman who had braved the wrath and personal attacks of reform opponents.
When he was done and read it to me, before e-mailing it to her, it made my eyes well up with tears. Despite our accumulated health concerns, the main point he had wanted to make, and to make sure she got, was how proud of her he was, how admirable it was that she took her responsibility seriously to represent all of her constituents, not just those that approved of her.
He also wanted her to know that in this "debate," what he and I are mainly concerned about is keeping down the rapidly increasing costs of healthcare and that our preexisting conditions should not be able to exclude us from getting health insurance in the future.
And that a larger percentage than those who are trying to disrupt meetings are not even able to attend those meeting because they are too sick or disabled to sit in the heat or keep their hands raised, or are sitting at the bedside of a dying loved one.
I am so disappointed that we as a country are not using this time instead to put all ideas on the table and brainstorm together to correct our healthcare system. I want to believe that as a nation we can truly take advantage of our diversity and come up with great ideas: to fix healthcare (and to create clean energy and to end genocide and oppression, to mention just a few).
But all this petty confrontation demonstrates that we are still just a brash, immature republic. And rather than taking advantage of that, we are plugging up our ears and squabbling in the backseat of the world amongst ourselves.
We think we are so evolved but even though we are one of the wealthiest countries in the world, our healthcare system lacks universal coverage, reasonable costs and superior outcomes. My friends from Canada, Germany and Denmark don't understand the uproar against adding a government option or other proposed reforms.
Anyway, OH e-mailed the letter to her office. A few days later, she called him from her car. She said her staffer read his e-mail, printed it out and carried it into her office, handed it to her insisting she read it.
Her staffer had choked up then she herself did. She praised him for writing so eloquently, confessed that she had read excerpts from it aloud that night to UCSF healthcare executives and then asked his permission to share it with other members of congress.
I am heartened that one calm voice in the form of one concerned letter from OH can contribute our viewpoints to the discussion.
OH went to a town hall meeting with a local congresswoman about healthcare reform yesterday. It was outside in a public park and in the sweltering heat, so I decided not to go with him. Three hours later when he came back, suffering from heat exhaustion and his ever-worsening back pain, he recounted the experience.
When he was finished, I was completely dumb-struck. I just couldn't believe that in my little bastion of enlightened people, criticized by the rest of the country as the west-coast "elite," that there would be such rude and disrespectful unwillingness to participate in such an important debate, no agreement just to disagree, with so much angry ugliness and hate.
While I was stunned and reeling, OH was furious. He reported that he was never able to ask his question but did challenge a self-congratulatory and satisfied group of the angry, shouting crowd after the meeting. He asked these self-identified evangelicals if they thought they were being good examples of and witnesses to their faith.
And when one of the congresswoman's aides circled back to him to apologize for not being able to get to him, she also asked if there was anything he'd like her to relay to her boss. OH said he first just wanted to thank her for braving the angry insults and hateful names ane attempting to inform the crowd.
He wanted to tell her that his wife (that's me!) wanted to be there but that I suffer from M.S. and so couldn't take the heat.
Then he wanted to remind her that for every one ill-mannered and disrespectful constituent shouting down the healthcare debate, there are 10 or more who are too sick or handicapped to even come out to a meeting, or are too busy taking care of a dying loved one.
I'm really proud of him and am glad he went. Yes, we are fortunate to have healthcare at the moment. But even as he has to contend with tremendous, ever-present back pain and chronic bowel problems, he also has to worry that with all his surgeries he is facing a lifetime cap that once reached, will justify our insurance company dropping him.
I told you that I was worried about healthcare, but I am horrified by the images of shouting, angry mobs at town hall meetings. And this is on top of my dismay and disappointment understanding the ousted party as just saying "no" and bragging that they want Obama and the country to fail. How is this in any way helpful to us, it's citizens?
I want concerns from every side to be considered and rationally debated, not loudly and proudly shouted down. I want us, as a people, to be more grown up than this. I believe that putting all of our heads together would result in the best solutions. And frankly I don't want to rely on the angry crowds or the insurance companies to suggest the right thing for me.
Woosaa. When "melancholy gnaws at me, maybe I need to connect with what is good in my life."
Quoted from one of the books I'm currently reading, Chronically Happy,1 which reinforces the idea that I concentrate on the quality of my life and the things that bring me joy instead of the M.S. and my body's continuing deterioration.
Here then is a "few of my favorite things."
2-in-1 shampoo/conditioner
My electric toothbrush
Tom's of Maine cinnamon clove toothpaste
A big block of rose-scented bath soap
The shape of my feet (hang ten)
Our large walk-in shower styled as a castle (our creative solution to the bungling of the former contractor: for example, b/c we were unable to put lights in ceiling, we created niches with lighting that appear as castle windows, b/c the walls were so out of plumb, we staggered wall tiles to become castle walls).
From my window, the clear blue sky and fine, crisp morning sun of Spring on the large Coastal Cyprus trees next door (looks like how I imagine painter Maxfield Parrish landscapes).
Fancy liquid hand soap that smells like grapefruit or lavender
My husband, my soulmate, my best friend who cooks, cleans, does laundry, and knows all manner of construction and electrical.
The sound of seagulls during the day, which reminds me that we are near the ocean, as I'd always fantasized about.
Our elliptical machine
The first few minutes of sunshine on my face (before overheating saps all my strength and energy)
Having loved ones stop by to visit
I'm also thankful for the convenience of working at home and still being able to walk. Amen.
1. Lori Hartwell, Chronically Happy: Joyful Living in Spite of Chronic Illness (San Francisco: Poetic Media Press, 2002)
Here's our latest carfunkel: [Digression of the day: I'm not sure where it came from, but we've taken to using the word "carfunkel" as shorthand for a messy, bungled situation, one that has not gone as expected.]
The seal of the downstairs' picture window had been broken a few years back when h.w.m.n.b.n. was busy botching the construction job. Water had leaked down between the double panes and a permanent mold had formed. The stain glaring back at OH whenever he sat on the couch continued to vex him.
I had confessed that I'd always wanted a window seat so OH was pleased to acquire free bay windows and determined to make one for me. So we excitedly started adding the salvaged bay windows to the house. (FYI, that's the figurative "we" not the literal "we.")
First, a small hollow was chisled out of the cobblestones in the front courtyard and a cement pad was poured to serve as a foundation for the bump out. The bay windows were roughed in and a roof was constructed. People walking by began stopping to marvel at its appearance.
Next, OH and The Saint moved upstairs. The contractor-grade picture window over-looking the front, that h.w.m.n.b.n. had installed yet again out of plumb, was removed. They began cutting out the roof above, shoring up the roof hip below to support the bump out and setting the second set of bay windows in place.
Right about this time, when the upstairs was still partially open to the elements, we were served with a Stop-Work Notice, i.e., put your tools down and step away from the windows. No construction could commence until the notice was resolved at the City Planning Dept. And oh, by the way, that department is only open Tuesdays and Thursdays!
It was Thursday night by this point. OH worked feverishly to draw up plans retroactively, and we slept under an open roof until the following Tuesday. And whenever one of us would start to freak out, the other would gently tug on our earlobes, chant woosaa and admonish "remember your pressure points" (from the movie Bad Boys II).
It seems that a new city inspector (well, actually an entire team, contracted from a nearby city) had taken over for the old city inspector, who had verbally told OH he didn't need a permit. Now, as he didn't have that agreement in writing, the new team wasn't inclined to take his word.
Their verdict: both bay windows extend the perimeter of the house closer to the property line which would violate the latest code. [woosaa…woosaa…]
Our options? We could undo everything and put back the old stuff. Or we could apply for a variance, at a cost of over $4000, which is nonrefundable and has been explained to be very difficult to get approved. Or we could reconfigure the plans and move the bay windows flat against the house.
woosaa…
