I was ahead of myself

So yesterday began feeling my new normal again.  And I was feelin' fine with it.  In fact it had been sitting here writing to a friend on PatientsLikeMe and got up to do one more small chore before lunch, then nap.  Not doing too much or too quickly, I know how to play this game.  I got my bagful of red peppers out of my fridge drawer (they were on sale so I loaded up) and was preparing to wash and then roast them for culturing later.  Put the bag on the counter and the room swam.  And swirled, and swished.  I was holding onto the counter by then.  Vision went black for the count of 2.  I sort of melted to the kitchen floor, thanks to holding the counter.  Didn't land hard or weird or hit my head.  Too weak to get up, and even down there still crazy dizzy.  Butt schooched across the kitchen to my  living room to my wheelchair.  Climbed in in, instantly nauseated.  Back to the kitchen for a ginormous bowl in case of sickness.  Then to the couch.  Had presence of mind to grab cell phone off the breakfast table and take to the couch.  World still spinning, even with eyes closed.  Was not headache based.  Constant dizziness and nausea and profound weakness.  Did not wait to call for help.  Left messages with both neighbors.  Decided if no reply by certain time, would call Tim at work.  Neither neighbor was home but, one came over about 40 min later and cared for me.  Breathing was quite shallow, but I think that's because it was scary.  She brought water, cold cloth, and got me into bed.  Brought me medicine and heating pads and she called Tim to let him know to check me.

Many times in these years I have wanted, longed for someone to take care of me that way but, yesterday was the first time I could not physically manage alone.

I did sleep, and world was still spinning when I moved my head upon waking.  We have walkie-talkies for geocaching and used them for "please bring me some food" requests.  I did not spend any time out of bed.

No more dizziness but, very weak.  Moving around quite like a tortoise.  Already medicated for headache.  9am now.  Have my therapist appt in a couple hours.  Glad she understands cavewoman language.

Tim thinks maybe due to hypostatic blood pressure, when blood pressure plummets from moving head up and down too rapidly.  The hours and hours of dizziness bother me.  Not worried or afraid but, its new.

More grateful than I can say that God put someone close by in my world to physically come to me.  It is truly scary to be alone and need help.  Not something a 45 yr old expects to face.

Tim just called to check and hearing me speak asked me to cancel my appt and please not leave the house.  That's how bad I sound.  lol

So grateful for those who love me.
Prayers of thanksgiving for sweet Vanessa who saw me at my worst and neediest, a true friend.

This is more like it

So, just three days ago I was writing about being on guard for the other shoe to drop.  It did.  And here is my epiphany.  I am fully at a state where this level of pain is what feels normal to me.  I have lived with this long enough and survived well enough that I am even more at ease when I have some symptoms as opposed to none.  When there are none, I'm on guard, which is stressful.  I actively prevent stress where I can so, having no symptoms is counterproductive.  When there are some, I successfully cope.  When they get worse, I respond successfully to that as well.  And I have lived through many a time when I was in pain such that I thought I would die.  And I haven't ever died.  So, this level of medium pain is normal for me.  It is my usual self now.  I have copied this from a FaceBook page and am pasting it here for information sake.

I do understand, for those who are purists, this is incredibly unscientific.  But, unfortunately, there are so few ways to relate pain since it is so subjective.  What I was feeling for some weeks was probably about a 2-5 level.  Yesterday though, I got to about 9.  Today, still being 9 am, I am already at 8.  But, delightfully enough, I do not feel discouraged, dismayed, hindered, or even down.  I just feel normal.  I feel empowered with the knowledge that I know how to live with this.  I feel confident that I control as much as I can and that my strength of faith will carry me the rest of the way.  I feel fine.  Not my nerve endings, mind you.  My heart and my mind.  My nerve endings are mewling and whining like kittens and puppies do when they are especially hungry or lonely or scared.  When they start howling and yowling (levels 12+) as if they are in pain, I will still know my faith, although my personal power will be diminished because it affects my thinking so much. I might, because I have before, forget that I have some power.  I probably will be confused about, well, everything.  But, my faith will remain.  And that, I can have absolute confidence in.  That, I would get tattooed on me if ever I were to do have one done.  The word FAITH.  About that, I am never, ever confused.  That is why, no, not why but how I survive. 

Feeling thankful that I am using my coping muscles successfully today.  Enjoying remembering the days recently when I didn't need them but, grateful that I can rely on them to work for me now.  Thankful for my faith.

Have happy, happy days!

Grateful, but unsure

I am feeling pretty well lately.  For the last few weeks, anyway.  And I am grateful.  Deeply grateful.  However, with this gratitude is sort of a confusing mix of "when will the other shoe drop" and general "I really don't have any idea what's going on".  I do realize that those two confused feelings are not helpful and indeed can cause stress if I focus on them so, I am writing here to avoid focusing.  Historically, in very cold weather, I hurt.  A lot.  I do remember last winter and my struggle through it but, the rest of the info which I do not remember is recorded in various journals.  Cold is very painful for me.  I know this to be a fact.  Well, this week the temperatures have been at or below freezing most days, climbing only to the high 30's.  Dry, but cold.  And I am not needing my wheelchair.  Some of the time, I am not even needing my cane.  This is unheard of.  Frankly, it makes me nervous, if I allow it, because I wonder when the crap-storm will hit.  Will I end up crawling to my chair suddenly one day, since I don't have my cane?  This is the benefit of being in my home full of furniture, hopefully, that won't happen.

The single only difference in my behavior this winter is that I am staying indoors.  I have let go of the guilt of walking the dog and I don't do it.  If Tim walks him before work, he gets a walk, if not, he doesn't.  I know this isn't great or ideal for him but, in my journey for some relief for myself, this is the pit stop right now.  So, maybe since I am keeping myself very, very climate controlled, that is making a difference.  I don't know.  I did go out to an appointment one morning in the cold but, I didn't suffer during or after.  My pain levels are lower than normal for me.  Fatigue is the same but, headaches are less frequent.  I have become disciplined about my naps again and take a med before nap time and before bedtime to help with falling asleep.  Also, I am diligently including kefir and cultured veggies in my daily diet and have been for 9 months.  Those are the only things I'm doing differently than last year, this same time.

So, in my natural human yearning to understand what I am going through, I have no idea.  I long for an answer to the question about why I feel better now.  My pain does not go above a 4 these days, which is remarkable and a blessing.  Yet, I cannot help but be on guard for when a flare will hit and it will skyrocket to an 8.  It isn't healthy to investigate that too far because, I can easily get into self-blame.  If I do something that changes it, anything that changes it, and I'm able to pinpoint that thing, then the pain is my fault.  So, really, it is hurtful to try to identify the reason, and especially hurtful to micromanage my movements so carefully.  I need to just live.  Let myself live.  But, it feels prudent to be on guard.  For example, it would be foolish to leave my home without a wheelchair now-days.  I have learned from those kinds of mistakes, no matter how low my pain is inside this house.

Thankful for relief from pain.  Praying for the ability to just enjoy each moment without worry about how I might feel in the next.  Wanting to wallow in the wellness.  Well, the relative wellness.  I still cannot dance through and entire song in my living room.  Lord, let me stay aware but not tightly guarded and not micromanaging all my human behaviors.  Let me just enjoy the relief and turn away from distress at the change I think is coming.

Have happy days!

Feeling pretty well this fall

About a week ago, I struggled with a decision.  I knew in my gut what I should do.  I knew what my beloved wanted me to do.  Yet, it was still hard to get a grasp on the actual deciding to do it.  I found out that a medicine I have been on for 9 months has a rare side effect risk of severe and permanent visual field loss.  The eye doctor was cavalier about it saying "oh, if I had rheumatoid arthritis, I'd take it."  Not bothering to read my chart to see that I, in fact, don't have RA.  Not bothering to know what I have.  Not taking any time to care about what the risk means to me.  Just explaining callously that by the time they see damage in an exam or I see problems in my vision, it will be irreversible and untreatable damage which could get worse whether I stop the drug or not.  Certainly, the longer I'm on the drug, the higher the risk just because of frequency of incidence in my body.  So, I decided to go off of it.  I can't tell that it has helped me in these 9 months.  That is the really hard part about this disease.  It is hard to measure.  I do know that I came out of last winter's flare after I went on it, but likely, I might have done anyway.  Also, my beloved reminded me, summer of 2013 was far better for me than this summer.  We were geocaching every Saturday for at least 6 hours a day.  This year, I only went once so far, which was 2 weeks ago.  So, in general, I know I am not better than I have been.  I know things are worse, or harder, if you will.  The decision struggle is just in the dashed hope.  I embraced trying this medicine after not having tried any for some years.  It didn't pan out.  It is unlikely that I will suffer any ocular damage from only being on it 9 months.  Except for the disappointment.  But, I delight in the visual world.  For me to lose large chunks of my field of vision including everything else I have lost, would be too much.  So now, I pray some young scientist comes up with the new, next treatment for me.  Preferably chemical free, but not necessarily.

The irony is this.  I have had better days since I went off of it 5 days ago.  I didn't know how best to stop, so a call went out to my rheumatologist.  The nurse returned the call and I informed her of my decision, my reasons, and my question as to how to properly stop.  Cold turkey?  Titrate down?  Never got another call back about that so, it has been a cold turkey situation and it has been fine.  In fact, better than fine.  The last 2 days, it has stormed and rained here pretty consistently.  And, wait for it,  I have felt ok.  (Two sentences which have never been written together.)  It has been remarkable.  I even had to go out to an appointment yesterday, and I did fine.  Yes, I was uncomfortable, but, not in the same way I can remember being during chilly rainy weather.  Makes me go hmmmmm.........

Grateful to even have the opportunity and the funds to try another medicine.  Grateful to be able to make the decision to go off of it because of preference rather than finance or intolerance.  Grateful that I did not plummet into a black hole of symptoms which would then make me question the decision.  Grateful.

Have happy days.