Rain and more rain – snow and arctic cold – and Prednisone update

What a past two weeks of weather it has been.  The torrential rains that hit SoCal also hit us.  There was significant flooding in some areas around us, washing away trails, roads, bridge supports, etc., but nothing damaging in our immediate vicinity.  However, we have a new pond to the north on our land, a meandering river in a formerly dry wash, a large lake (flooded field) to our northwest, complete with ducks, and a few pelicans (how do they find the water so quickly??), and there were enough puddles around us to almost be considered a moat around our house.  Despite being very wet, rutted, and muddy, our dirt road remained passable. 

Then two days ago we woke up to several inches of snow – it snowed all day depositing several more inches.  Yesterday the storm cleared and the arctic cold front descended upon us.  My husband had to get up onto the roof, in the 20 degree cold (not counting wind chill) and scrape the PV solar panels so we wouldn’t spend the next few days depending upon the generator alone.  Good thing he did that, since the generator gets “fussy” and won’t auto-start when it is really cold.  This morning it was really cold - the battery bank voltage was low enough to call for a generator start, and it didn’t start.  Since the internet is also down we’re not sure how cold it is – but my guess, based on the amount of crusted ice at the bottom inside of all our high dollar insulated windows, is about minus 10.  My husband had to trudge through the 6 plus inches of snow, out to the generator behind his shop and do a manual start.  It took a while, but it is now going, and the sun is now shining (almost 9am) so we are charging at 52. 

It’s like Murphy’s Law of solar energy homes:  when it is very cold, the batteries don’t hold their voltage very well; when it is very cold the propane forced air furnace comes on a lot which really saps the power and voltage from the batteries; when it is very cold the darned generator won’t auto start, forcing us to trudge through the very cold to manually start it.  Aaaargh!!!!!!!!!!  And did I mention that lots of rain doesn’t allow the batteries to charge either?  And that cloudy afternoons, even when it is pretty mild out, fail to do a good charge on the batteries.  It has been a rough month for charging, and a good month for the propane companies.  Good thing we have a large propane tank, and that we fill up every summer. 

Meanwhile, the prednisone, in addition to the stress from the weather and the stress from the holidays, has been causing my heart grief.  I’ve now had three episodes of afib since starting prednisone.  After the latest we decided to change the dosage on one of my heart drugs to see if it will work better, and I’ve also started taking a very small dose of lorazepam twice a day to see if that decreases my stress.  So far, so good, but it hasn’t been long enough to really tell yet.  What I have noticed is that the tiny hit of lorazepam in the morning decreases the very irritating morning “rush” associated with taking the prednisone – so even if it doesn’t help that much with the stress it is helping with something else, and helping me to sleep better.  I hate the idea and now the reality of taking one drug to deal with the side effects of another drug – but my doctor assures me that is fairly typical of long-term prednisone usage.  I’ve also decreased my dosage to 15mg/day, on the advice of the other physician I had to see last week during my third afib episode.  Now I need my sed rate and CRP checked to make sure the inflammation isn’t increasing on the lower dosage.  The goal is to get to 10mg, which should decrease cardiac irritability (e.g., afib episodes), but it has to be done carefully so that the temporal arteritis doesn’t re-occur.  Trying to balance all this when I’m so totally out of balance – what an interesting dance it is.

Now to wait for the internet to be back up, so I can post it.  Happy New Year to all.

Prednisone: 6 weeks down, 46 (or so) weeks to go

I’m sitting here in my recliner, feet elevated, back straight, laptop on the arm of the chair, as my daily (morning) dose, which is 25mg now, of prednisone surges through my system.  That strange, antsy, weak, shaky, buzzy feeling that is repeated each and every day for a few hours.  It isn’t as strong now as when I was on a higher dose, but it is still there, every morning, predictably starting within a half hour or so after my dose.  My teeth and jaw sometime feel like they want to chatter, my fingers often feel like they have a small tremor.  Within a few hours, the surge wanes, and I feel what has become “normal” for my “prednisone self” – a little “off,” a little weak, a little shaky, but not as bad as the morning rush. 

This last week has been both bad and good.  The bad – 23 plus hours of atrial fibrillation, starting Thursday afternoon, and finally ending on Friday afternoon.  I never feel very good when I’m in afib, but afib on prednisone is something else entirely.  A heart racing along at 120bpm (give or take a few) is a heart that is working pretty hard, yet not doing a very good job.  I always feel a little shaky and weak, and pee a lot, when I’m in afib (which hasn’t very often – before this darned prednisone I’ve been very well controlled, with episodes few and far between and pretty short in duration).  Add that afib weakness to the shaky-weak-off feeling of prednisone, and you feel pretty awful.  23 hours is a LONG time to feel pretty awful.  Did I say I also can’t sleep when in afib?  I can’t lay flat, need to stay at least 45 degrees elevated and on my back – I’m a side sleeper, so goodbye sleep when in afib.  I listened to an audio book the whole night, drifting off for a few minutes here and there, rewinding to get back to where I last remembered the story, over and over the whole night.  So add sleep deprivation to the whole mess….   I injected my first dose of Lovenox (anticoagulant) at 12 hours of afib.  I stopped warfarin (an EVIL drug in my mind) when I moved down here 2 ½ years ago, and had an “emergency” supply of injectable, fast acting, anticoagulant for the “what if” of a long run of afib, e.g., over 12 hours.  I never had to use it before – last Friday morning I used it.  Better to be anticoagulated for a short period of time than risk a stroke.  Anyway….we had a brief crisis with our solar power at 7am, which added stress to the picture – it was resolved within a half hour, but it set my “relax and spontaneously convert to normal rhythm” mode into total chaos.  By 18 hours, I just knew that I would probably need to be cardioverted by being shocked, that I wasn’t going to get out of this spontaneously.  I told my husband that I wanted to go to the emergency room in the afternoon, and we finally headed there a little before 4pm, at hour 23 of afib.  I couldn’t even find the strength to walk the few feet into the tiny local ER – I was wheeled in!  The nurse put the pulse oximeter on my finger, heart still chugging along at 115bpm, I told her that the head of the gurney needed to be elevated, I stood up from the wheel chair, turned, and sat on the gurney, and I spontaneously converted to normal sinus rhythm!  Hallelujah!!!  I felt so much better within minutes, although still exhausted and sleep deprived.  They drew blood, did a chest xray and an EKG, watched me for a few hours to make sure I didn’t go back into afib, and then sent me on my way.  I walked out of the ER under my own power - tired, happy, relieved, and “unshocked.”  But, also disgusted and humbled by what havoc this darned prednisone is causing in my life.  It is hard to remember sometimes how good I actually have it – have many are so much worse off than me.  I need to remind myself, and a few days later I did. 

The good part of the “both bad and good” came several days later.  I felt connected and stable enough on Monday that we drove to the nearest Walmart to stock up on some needed OTC medications, and get a battery for my car.  It is 70 miles away – and I drove both ways.  I felt pretty weak after walking around the store for 45 minutes, but after a short rest for lunch, I had enough energy to drive back.  Yea!!   That is a milestone, a good one.

I am still tapering down to 20mg.  My doctor says I’m doing fine (this was before the afib event though).  My inflammation markers (sed rate and c-reactive protein) in my blood work have returned to normal.  I’m on 25mg, and it is working.  I hope to get to 20mg within the week.  He said that I will stay on the 20mg for 4-6 weeks, and then slowly, very slowly, taper to 10mg, basing it on symptoms and my blood tests.  I wonder if I will get the “surge” on 10mg?   Then we will just have to see how long I will need to be on that much lower dose. 

Meanwhile, I’m hanging in there, still.

Remembering

I haven’t been very good lately about keeping up with these blogs.  Probably because it is getting close to the holidays, and I begin remembering long ago losses.  For many people, sadness abounds amid the supposed joy of the holiday season.  Losses become more poignant, more easily recognized each year as the “season” builds after Thanksgiving.  No, I don’t become clinically depressed, but I remember, and miss those people and those things that are no longer here.

My mother died early morning on December 3, 1964, in a hospital, alone.  That’s 46 years ago, but I still remember the phone ringing at 6:30 am, hearing my Dad begin to cry, coming to wake me up (I was already awake of course), and us falling apart for a while.  That was the last time I cried for a very long time.  I sucked it in, and didn’t let anything loose – I still don’t cry easily, but when I do let go I cry for so many things.  My father’s birthday was only a few days later – happy birthday Dad, want to plan a funeral?  What an awful time.  Less than two weeks later I answered the phone on a late Thursday afternoon, before my father was home from work, and was told that my grandmother had died suddenly at her “old folks” home.  She was walking down a hall, fell over, and was dead.  I couldn’t deal with it – I wrote a note for my father, and drove to my friend’s house.  He wasn’t very happy to find out about her death that way, but then neither was I.  Another funeral to plan and attend.  My last in a very very long time.  I was still sucking it in, couldn’t talk about it, couldn’t do anything but lean on my best friend.  I was falling apart inside and no one could see (they were hurting too much too) – just the stoic exterior, “she’s doing so well” etc., etc.  24+ years later, with the help of several great counselors, I finally dealt with those losses.  What else did we lose?  The extended family holiday celebrations.  In less than a year, we moved 600 miles away – away from my best friend, my then boy friend (which, in hindsight, was probably a good thing), and our extended family.  We drove back for the holidays, but it wasn’t the same, staying at my Aunt’s house.  Couldn’t get away from the chaos, the fake happiness.  Then when my father remarried, there was no way I wanted to be there.  So, I would be alone for the holidays, now 2000 miles away.  But then healing, and my own family, and my own traditions were able to supplant much of the sadness, and remember again with fondness.

Other remembering….  My mother was never told about her cancer.  They didn’t do that then – worried that the patient would “give up” and just die.  So what?  She was dying anyway.  Now they know better.  But back then, my mother’s doctor told my father - he kept it all inside except for other “adults” in his family who also were sworn to secrecy.  I remember being home with a bad cold one day, my propped up in my father’s twin bed, next to my mother propped up in her twin bed, and she said “I couldn’t have cancer, your father couldn’t keep something that serious from me.”  The final secret, and a huge one, in an otherwise very good marriage.  My mother felt that something was being kept from her, and the closeness that could have come from that sharing was taken from them by the secrecy.  But, that was how they did it then.  I hope no one still thinks that is ok anymore, (although 20 years ago my ex-father-in-law’s family did the same thing to him – how appalling!!)   

More remembering….  My son climbing into the sofa bed with my ex-mother-in-law very early each Christmas morning, and the non-stop whispering and giggling until we finally got up.  His bouncing around in his pajamas as he discovered the bicycle, or the keyboard, or one of the other special gifts he received over the years.  How much we missed, but with fondness and fun stories, his grandma for the holidays after she passed away in 1993.  How much we missed him for the holidays when he was overseas in the Peace Corps.  And now he has is own family, and they will be down here for Christmas.  Creating new memories to write about in future years.

Prednisone One Month - from jawbones to puffballs

This journey hasn’t been easy.  The last time I wrote about my prednisone was when I was hoping to taper easily to the lower dosages and reach my maintenance dose within a week.  Well, that didn’t happen.  After my second day of 30mg I started to develop temple pain again – in other words I hadn’t been on the higher dose long enough to suppress my immune system from attacking my temporal arteries.  So I had to go back up to 40mg for a few days, the last dose that controlled the symptoms.  I searched the web on tapering and weaning of prednisone, and it sounds like this isn’t an unusual occurrence.  My body is apparently very sensitive to dose changes (surprise, surprise – it certainly is with all other meds).  So I decided to slow the taper down, and use 5mg increments rather than 10mg, and hope that the symptoms don’t return.  After 4 days of my second go-round of 40mg, I tapered to 35mg for 5 days, and I am now on 30mg again, with no apparent resurgence of symptoms, yet.  I’m trying to stay positive….  I’ll stay on 30mg for 4-5 days, then drop to 25mg, see how that goes, and then, FINALLY, I’ll drop to 20mg. 

What other prednisone side effects have I had?  On my return to 40mg I experienced a strong return of vertigo within two hours of taking the dose.  Whew, a real shaky day.  Luckily it abated more quickly this time and by the next day I was back to just slightly dizzy, needing only a small dose of meclazine.   Speaking of meclazine, this is the first day I haven’t taken a small amount and so far so good.  Not that I feel “good” yet, but I just feel a bit “off” rather than fall-down dizzy.  The profound weakness of two and a half weeks ago has also mostly resolved.  I am starting to take walks, weather permitting.  My walks aren’t as long or vigorous as they were before all this started, but I am slowly building that strength back.   My blood pressure is continuing to stay low - so low, in fact, that I had to back off on the increased meds I started three weeks ago.  I’m sure my meds will still need some tweaking as I continue to taper.  My blood sugar has done well, most of the time, on my low glycemic diet.  I’ve had two 2-hour readings that were above the limit set by my doc.  I’m learning more about my body and about carb-containing foods by experimenting a bit, seeing what works and what doesn’t.  I’m still steadily dropping some weight, which is wonderful.  I experienced some episodes of GERD during the first two weeks of therapy, but that resolved with increasing my dose of Aciphex (a wonder drug!!) to two a day. 

What other side effects do I have?  Chipmunk cheeks, of course.  I’ve watched the little pads of fluid grow in my face.  There are pads parallel to and in front of my ears running down the side of my face.  Then there are the puffballs at my jowls, running from the apples of my cheeks down to my jaw and which curve slightly under my chin.  Between those fluid pads there is a vertical, finger width depression.  Pretty strange.  I wonder if they will fill in….   Knowing what to expect has made this more interesting than distressing.  I may not like it, but I can’t do anything to stop it, so I might as well get used to it. 

My moods have definitely been variable, and enhanced.  It’s like me, but exaggerated.  When I’m irritated, I’m really irritated, and quickly.  I want to strike out, NOW.  But knowing that these reactions are drug-induced has made me very cognizant of those feelings, and able to control them, most of the time.  Sometimes it just pops out, and then I feel badly that I’ve blasted someone with negativity (most often my husband).  I told him that it sometimes feels like bees are buzzing around my head, and that when those bees are disturbed it is like killer bees wanting to get out and attack.  I’m not sleeping very well (never been a great sleeper – now it’s worse), and that enhances the irritability even more.  I tried taking a low dose of lunesta a few times and it does seem to help, so I may be using that more often while I’m trying to get more balanced.  I hate that I have to take a medication to deal with a side effect of another medication, but that is modern medicine for you! 

As you can see, I’m hanging in there, and actually improving.  So I’m going to keep my positive attitude going for now, and update again in a few weeks.