Here We Go Again

Another round of doctor’s visits and I can update my My Story section.  Several key items have happened already this month with more to come.

First, I got my handicapped parking placard.  I’m dealing with the usual jokes such as getting told I can drive everywhere and how much would I charge to rent it out.  My husband was glad, not just for my sake, but his as well.  I was stoic until later, in the privacy of some anonymous bathroom stall, when the tears came.  I’m disabled, I know that.  I have the medical files to prove it because, by the grace of God, I currently have insurance.  Still, to be labeled handicapped…  I can’t describe the ambivalent emotions involved.

My rheumatologist said, in my presence, that it was unlikely for someone with PsA to have Lupus also.  That’s been the big fear for two years, and while it isn’t impossible, I find I can think about it much less now that he’s said so.  I have enough names for how I feel.

The treatment of choice, for now, is Humira; a very expensive drug delivered by injection.  Expensive as in $1100 per month without insurance.  Even with insurance it will run $250 plus $200 per month after that.  Abbott Lab will pick up most of that for six months.  That really bothers me.  We can’t afford it now, I have no reasonable expectation that we can afford it next year.

However, Humira has some side effects, chief of which is to suppress the immune system.  I will have to be faithful about immunizations, careful about getting sick.  Any tumors will be uninhibited while on these injections.  For that reason, the tumor behind my jaw is coming out next month.  One less worry.

And one new worry.  The discs in my neck continue to deteriorate.  It seems one has begun to leak, causing additional neck pain and radiating pain to my left arm (which is worse than the neck, actually).  The Vertigo is also getting worse.

More good than bad.  That makes it a good month.  I can barely move, but still holding a job (which makes the symptoms worse) and still with a spouse who quit looking for a job more than a year ago.

I’d love your prayers.

Just because we don’t look sick…

I have to say thanks to the RhodesTer for a recent post.  He describes his wife’s autoimmune diseases well, and his love for her certainly shines through every word.  He also brings up some serious concerns for people in our economic situation (the working poor).  It’s a good post that I recommend highly.

He also suggested following The Deal with Disability.  This lady is absolutely wonderful, and that’s another thanks from me to Dave.

Acetaminophen is dangerous, says FDA

I’ve sat on this article from USA Today since July 8.  I guess I was kind of hoping it would go away.  As one of those chronic pain patients who can’t take narcotics and still hold a job, I am dependent on over the counter meds to take the edge off or at least let me get through the day.

I will state up front that I don’t take a lot of straight Tylenol because it doesn’t even touch pain.  I might to reduce a fever, but for pain?  Nope.  However, I really like Excedrin for pain control and take much more than the recommended dosage of Aleve each day.  My liver already hates me and my stomach is already ruined.

So here’s an article in USA Today’s Life section (Wednesday, July 8, 2009, page 6D) advising readers that acetaminophen has a high rate of liver failure attached to it.

The Food and Drug Administration joint advisory committee spent two days in discussion of the safety questions.  Their recommendations were to lower the maximum daily dosage, strengthen labeling and remove it as an ingredient from some prescription drugs.  They have yet to take action.

Acetaminophen is an ingredient in Vicodin, Percocet, Darvocet, NyQuil, Exedrin, and several cold and flu medications.

The FDA reports an estimated 110,000 emergency room visits a year are related to the drug and linked cases of acute liver failure are also reported.

This is the medicine most of us give to our children!

I think I’m glad it doesn’t work that well for me, but now I have to watch everything else I might take to make sure it doesn’t creep in.  My liver isn’t in great shape as it is.

In related news (as in prescription drugs used for pain control being dangerous), propoxyphene painkillers are being phased out of all European markets.  Darvocet, Darvon and other painkillers that contain the narcotic propoxyphene will, however, be staying on the US Market with stronger warning labels.

The European Medicines Agency concluded that the risks of propoxyphen medicines, particularly for the potentially fatal overdose, outweigh their benefits and recommend the European Union gradually withdraw them.

This drug, apparently, kills, though the article doesn’t give specifics.  It does quote Sidney Wolfe, Public Citizens’ Health Research Group’s acting director to say “I have never seen a drug with a more unfavorable ratio of risk to benefit.”

I’ve been prescribed Darvon several times throughout my young adulthood before percodan and percocet became more available.  This short article cleared up part of my curiosity over what happened to a drug that seemed to work well on pain.

So I’m stuck with Aleve for daytime and my standing prescriptions for Tramadol (Ultram) or Demoral for nights I just can’t take it.  I’m half afraid the FDA is going to come out with something bad for Aleve, also, in which case I’ll be sitting on a street corner promising a song or poem for food.

Surviving & Thriving With Chronic Illness

World of Psychology hosted a brief interview with Dr. Elvira Aletta, who lives with a chronic disease and is working on a book about dealing with chronic illness while avoiding depression.  The interview gives her five rules for living with chronic illness, and they are excellent.  If you or someone you know is struggling in this way, print these rules and read them every day.  Post them to the bathroom mirror or the refrigerator.  I’ve included rule number 4 below.

4. Create a new measuring stick.

Our self-esteem lies in the standards with which we measure ourselves as we go through life. To thrive with chronic illness, throw out the old and rethink your standards. If you are used to defining yourself by your 50-hour workweek, for instance, you may feel lousy about yourself because now you can’t manage it.

Finding a new standard can be tough. One technique I use with patients is to have them ask themselves what is reasonable? Is it reasonable to do it all yourself or is it more reasonable to delegate? Is it reasonable to register the kids in travel hockey or is it more reasonable to stay local? This is where a lot of courage is needed. Courage to address old pressures to be a certain way and to imagine value in doing things differently. In my own life and in my work I find that those who thrive despite chronic illness creatively find opportunity in their new reality.

Sleeping With The Octopus

So I finally started with the CPAP two nights ago.  The mask doesn’t fit well and I had it so tight it practically drilled a hole in my forehead, but I’m doing it.  Mark at Broadcasting Brain said he saw benefit quickly.  In fact, his post made me feel so much better. DLG (commentor here and my mom) said others saw a change in her in a week, and she did in a couple weeks.

The mask is hellish only in one way (besides the hole drilling thing).  I wake up coughing in the wee hours, and the minute I open my mouth and the passage from nasal to throat, I feel I’m suffocating in a terrible wind.  Waking up enough to not panic isn’t always easy.  This mask is so tight I can’t temporarily lift it away so I can wake up and calm the panic.  I ripped it off the first night and stuck both thumbs under it the second night.  I just need enough time to wake up, cough or whatever, and rest the mask.  I’ll get there, right?

I’m using the mask shown in profile in the image at the top of this post.  I need to find the money for one of the nasal pillow masks or the one on the lower right of that image.  You know…before that hole gets all the way through my skull.  I’d rather save up the money for this one though.  It looks awesome on their website.

Surgery Again

This was the first surgical procedure I’ve had in a very long time that was not abdominal.  That alone had me shouting from the rooftops.  The reason for the surgery also had a name I can barely pronounce (or spell) so it was easy to turn people’s curiosity to other matters.  If you want an unfairly dramatic version, here you go. Don’t look it up or click through.  You really don’t want to know.

I looked for an image.  I did.  I didn’t find any I was willing for anyone to see near a mealtime.  I’ll just say this.  From the front fold of my arm (arm pit) to the back fold, I have a zipper of staples.  Both sides.  Four days out and I’m doing very well.  Even sitting here typing for a few minutes.  I take my pain meds, so end up sleeping a lot.  My arms are not much use yet.

And still, I’d rather do this than abdominal any day.  I can sit up to roll over, I can walk, bend over and prop a book on my belly…all things I couldn’t do even with laprascopic.  And then there’s the up side of not developing additional hernias (I have four) in my ab wall.

So, I’m here but I’m not.   When my arms work better, I’ll be on more.  All is well and the staples will come out in another ten days.

Receiving “The Call”

I can’t think of anything that would match the call a woman receives to tell her she has breast cancer.  I can, however, imagine a distant second.  The call during which we receive the news that there is something “suspicious” sure doesn’t feel good, either, but I’ll take it over the first call any time.

Our hospital recently went to digital mammography, so I wasn’t surprised and knew a callback was a good possibility.  What I wasn’t prepared for was the phrase “we need a different angle to see if  it is real.”  Hmm.  Interesting turn of phrase.  It didn’t help that I had glanced my images when I left and saw a white streak I didn’t understand.

Now, I understand logically that this callback is simply part of the new baseline needed when switching to digital.  I  understand logically that the odds are pretty low.  I got this call in the midst of being very ill with cellulitis and infection.  I wasn’t in a position to be very logical, though I succeeded in keeping it down to a low grade anxiety.

I dutifully went back for the extra films.  I asked questions.  I saw what they were looking at.  And I got the news that they wanted to recheck it in six months, but did not have cause for alarm right now.

I have two things to say.  The first is that week of anxiety was my own fault because I had more faith in the films than I did in God at that moment.  The second is that digital mammography is incredible.  Something that might not even have been visible on  the old kind was clear on this one and is now under observation.

Please, if you are “at that age,” at high risk, o r have a concern, get a mammogram.  Get the peace of mind, or get the peace of mind of fast treatment.  Do it for your loved ones.

It’s Just Me

What a month.  I started out with abscesses under both arms and progressed to cellulitis, along with a UTI and other assorted fun stuff.  I went back to work and just crawled along for a few weeks.  I’m starting to feel a bit better now and am working to once again establish a posting schedule (I’m also getting ready to start a new novel, which will suck every available moment).

I have a lot to talk about, but rather than lumping into one long post, give me a few days to sort things by topic and get some things ironed out.  Amongst topics that might come up:  the stress of mammogram callbacks, surgery prep, being PC2 disabled, what to do about Barbara, coping with mirror people, the necessity of withdrawl, the wonders of Zoloft, and how recovering from illnesses never seems to happen for some patients.

There’s good stuff, too. There’s also much to laugh about and at.  Life is never so bad that we can’t find reason to smile.

Why is it So Hard?

If you are used to pushing yourself for decades, you’d think slowing down would be at the forefront of your mind (it is), and that it might be hard to accomplish (it is), and that perhaps life will give you the opportunity to try…it won’t.

I have spent the better part of this past week away from the computer…away from the deadlines, the posting schedules, and the rest of it.  I worked 12 days straight for 157 plus hours without time off, and my body needed it.  I needed it.

Something has to give.  Because it seems life refuses to cooperate (as I know God is working offstage beyond my vision, I am only confessing how I feel, not reality) and I can’t give up 12 hour days, then I have to give up something I love, that would also help to build a different future for me.

I can’t give up writing.  That is unthinkable and just not possible.  I’m not allowed to give up the day job for financial reasons, and because I’m blessed to HAVE a job in this economy.  So, in my “spare time,”  I can simply be a blogger, which is still pressure, but fits into an established routine, or I can simply be a writer (which requires a platform and makes at least one blog necessary), or I can simply be a business owner and give up the other two…

My dreams are crumbling for lack of time and ability to get it all done.  Relaxation is not in my vocabulary.  Neither is fulfillment in the spiritual sense.

I believe God gave me a gift because He expects it to be used for His purpose.  I’ve reached the point where His guidance is paramount in knowing how to proceed.  Until something shakes loose, or His will is revealed, I will be doing little in the way of regular, scheduled posts here or on Vast Chaos.   I’ll still be here, and post when I have time and the need is there, but I can’t commit to a regular schedule of posts.

Life is full of obstacles.  At the stage of my life where I should have more time and a bit less stress, the opposite has occurred.  I need to cope with my life for a while and pray hard to give up expectations for how things should be.

This is the reality of living with diseases that rob you of rest, time, and relaxation.  This is the reality of today’s economy.  Time for me to seek God’s reality and find a better path.

Shoulders Are Hard to Find Sometimes

Everyone needs to talk about their problems.  It’s an almost universal condition.  I have my journal, so need to talk less than, say, a verbal processor or someone with no outlet.  I’m human too, and sometimes I need to know someone cares.

The problem is I don’t have many people to talk to.  Those that love me hurt for me and I don’t want to add to their burden.  I also don’t want to have to address my husband’s work issues, which would certainly follow.  I can’t talk to him because he is convinced he’s in as much pain and already burdened with guilt for sitting home for almost a year while I support us.

Those that would understand are dealing with their own pain and health issues.  They can relate, but aren’t in a position to say some of the things I need to hear.

Sometimes I need to be told I’m doing okay, and that my stubborn keeping of the job is appreciated.  Sometimes I need someone to help me figure out how to get through another day.  Sometimes I want to run from this life, build a small hut somewhere, and be alone with my notebooks (okay I seem to want that a lot).

I think what I most long to hear is this:

“You have taken the responsibility and burdens long enough.  You’ve worked hard and you’ve made it further than the doctors said you would.  It is okay to lay these burdens down and rest a little, find other things to do with your life besides support a family.  Your dedication and willingness to keep at it are deeply appreciated.  You don’t have to do things that hurt you any more.  You don’t have to do it all.  Let us take care of you now.”

And, of course, those are words I am likely to not hear this side of heaven, or from anyone in a position to make it happen.  I’ve learned I can only rely on God and myself.  That’s life, isn’t it?

I’m so tired…