My Beautiful Grandson

My beautiful grandson was born 16 days ago, on September 9^th.  He is such an amazing gift, such a blessing to us all.  His birth was induced, by cervidil and pitocin, at 38 weeks, taking him somewhat early (but at "term") as a precaution against another stillbirth, and to reduce parental (and grandparental) anxiety.  My beautiful daughter-in-law had him without any anesthesia, which is pretty darned amazing for a pitocin-induced delivery!  She was wonderful – they were all wonderful – in seeing us all through this most wondrous of experiences.  My son and DIL are caring, doting, and loving parents to their gorgeous little son.

I've been staying with the kids for almost 6 weeks now, anxious before his birth, and now busy helping out as needed after his birth.  I'm very homesick, and miss my husband and my home, but these days with my infant grandson are precious and irreplaceable.

Yes, I'm still on prednisone; I've stayed at 7mg throughout my visit, except to bump it up to 7.5 for the two days of my DIL's induction (for the stress).  Once I'm home and see my doctor I'll start to slowly taper again; my guess is that I'll be off in a year if all goes well.  That will make it ~3 years total, instead of the one year I initially expected for temporal arteritis.  And, yes, my heart still acts up with afib when I'm stressed, although in fairly short episodes.  Afib has happened fairly frequently this past few months, which is no surprise.  I went for a stretch of over two months without afib early in the summer, but then the anxiety I had concerning my DIL's pregnancy, and my tapering, started it up again.  Now that my darling grandson has been born, and there are just the "normal" worries associated with a new baby, I think my heart (full of love) will calm down and not bother me as much.  Full of love, what a wonderful feeling…..

Year Two, Day One

Yesterday was the anniversary of my grandson's stillbirth.  So many tears, so many memories - again, both good and very, very bad.  From now on everything is a "second" not a first.  We survived the first year, we will survive subsequent years.   But he will never be forgotten.

The night before last, one year from Liam's death in his mother's womb, I had a dream.  Not the beautiful, touching dream that my daughter in law had, yet still a good dream.  In this dream, which started sometime after 3am on the 18^th, I saw an infant from the chest up.  It (gender unknown, therefore the use of "it") wasn't a newborn, but probably a few weeks old and had a receiving blanket pulled up to the underarms.   My first sleeping thought was "this is Liam."  But then the baby looked up at me, took a breath, and started to cry, arms flailing.  Laim never breathed, never cried.  Then the dream ended.  I interpret this as a very positive dream of the near future, of an infant who will live, who we will love, who will love us, and who will cry to be held.

A Shooting Star

Several days ago, my husband was at the neighborhood "old farts" penny poker game, and I was home alone multitasking.  I was playing with my new cell phone, completing online crossword puzzles, and watching TV.  I was frustrated that my new phone had just been updated online and something had changed.  I became frustrated trying to figure out my phone – and then I went into afib.  So I called my son and my beautiful daughter in law (DIL) – asking them to call me back to see if the phone even received calls (it did).  I spoke with my DIL for a while, both of us realizing I was very emotional about the upcoming first anniversary of my grandson's stillbirth.  She was so comforting as I cried for a while and we commiserated about our mutual loss – and then I came out of afib.  We kept talking for a while longer, and then my son and I had a nice chat.  I felt so much better after the call.  My DIL told me that her period was either due soon or one day overdue (depending upon either a 26 or 28 day cycle), and that she was hoping that she was pregnant.  I had a very strong feeling, based on a dream ~8-10 days ago, that she was pregnant, but after her experiences with pregnancy loss, I didn't dare say anything except if it is supposed to happen it will.  After the call I tightly held an amethyst heart in one hand and a piece of sodalite (etched with one of my totems) in the other, and went onto my back porch (which faces NNE).  As soon as I got to the end of the porch cover so I could see the trillions of stars on that moonless night, there was a shooting star to the northeast.  It was very bright, not too long, and had a reddish tinge to the trail.  I burst into tears, saying "thank you thank you." 

The next day she posted on her blog that she had two positive pregnancy tests.  Happiness mixed with shared, remembered loss.  I have very strong positive feelings about this pregnancy – I pray that I am right.

As far as the dream, or waking vision that I had a short while ago?  It was early morning, and I had not slept well, fairly usual on prednisone.  I was listening to an audiobook, as I do every night now, eyes closed, trying to relax enough to fall asleep.  Then in the dark of my closed eyes there was a very bright central light, like a star; it faded somewhat, then another bright light/star appeared.  Then the stars merged into one, then very quickly there were very slight lines dissecting the star, almost like a cell was dividing into multiple cells.  Then it was over – seconds at the most.  I opened my eyes, feeling like I had been very aware (awake?) while that had happened, and said to myself "That was a conception dream.  My kids are already pregnant or going to be pregnant soon."  I wrote it on my calendar so I would know when it happened.  Now to keep the positive thoughts brought on by the stars….

Prednisone and general life update

It's been so long since I posted here.  It seems like my failure to taper my prednisone, and all the associated unpleasant side effects and emotions, along with the loss of another pregnancy by my beautiful daughter-in-law have turned off my ability to express my feelings in print.  So this will be a summary of the highlights and lowlights of over four months of my life.

First of all, I haven't yet succeeded in tapering below 10mg of prednisone.  I kept having breakthrough symptoms of my underlying disease (the reason I'm on prednisone – temporal arteritis) whenever I would taper beyond a certain point.  I failed miserably to get to 7.5mg in August, then failed again when only on an every other day regimen of 10/7.5mg, then failed again trying to get to 8.75mg at the 10mg for 2 days, then one day of 8.75mg…  Then, several weeks before Christmas, my heart starting acting up again.  First there were lots of PVCs – somewhat uncomfortable, but not dangerous.  Then 5 out of 6 nights in a row I had an episode of afib, each lasting anywhere from 10 minutes to several hours (and this is after 3 months of no afib episodes at all).  My husband said it was probably the stress of the upcoming holidays, which are never easy for me.  I do think it was that, combined with the stress of trying to taper and continuing to fail.  I saw my doctor, and he ran many tests.  The only abnormality was an asymptomatic UTI, which could have stimulated some of the heart irritability.  I hope it is treated now – my post-treatment culture was submitted today.  I'm still having occasional afib, and it seems to be related to the prednisone taper dosages which I've just started again.  I'm keeping my fingers crossed that I'll get through this.

And now we are approaching the one year anniversary of my grandson's birth, and his death.  I always say that the first year is the hardest for any major life tragedy.  Everything is a "first" – after that, they are seconds, and then thirds.  Not that the pain isn't still there, because it is - but there is something so agonizingly raw about "firsts."  I made it through the stress of the holidays with only a few hiccoughs; I'm not doing so well right now. 

I remember, and the memories are both wonderful and awful, intermixed, and out of sequence.  What haunts me most is the phone call from my son stating there was "no heartbeat."  My heart is still broken, at times beating fast and wild, while his never beat outside of his mother's womb.  The dreams of "connection," and then goodbye.  Did I have the connection dreams because there would never be a real world connection?  Was the goodbye dream real?  I know it was - but, again, it breaks my heart, brings the inevitable tears.  Seeing my husband's face, at last year's Christmas, full of wonder when he felt, for the first time ever in his life, our wonderfully alive grandchild doing summersaults in his mother's womb.  The happy faces, full of hope and dreams; the tragic faces full of disbelief and grief. 

Do painful experiences happen for a reason?  If so, what possible reason could this be?  Too much pain to too many loved ones.  But we go on, we learn, we survive, we live, we love, and we learn to laugh again.  And we cry, and grieve, and have an emptiness that can't be filled by anything or anyone else.  But instead of being an emptiness in the center of our being that we can't see around, it is slowly pushed to the periphery – it is there, but it doesn't rule us anymore.

Happy birthday my dear Liam – you are loved.  

Prednisone: Tapering problems

I was able to taper my dosage of prednisone from 12.5mg to 10mg so easily that I became foolish.   When given the ok by my doctor about 6 weeks ago to taper from 10mg to 7.5mg, I used the same schedule as I did with the previous taper:  a few cycles of every 4^th day taking 7.5, then every 3^rd day, then every other day, 7.5 and 10, for about five days, then every 3^rd day taking 10 for a few cycles, then every 4^th take 10 for a few cycles, then declare myself at 7.5mg.

 

Unfortunately, in the midst of this tapering schedule, we had yet another family crisis which increased my stress level considerably; stress can really mess with the body’s need for cortisol, and therefore a slower taper was warranted.  But I didn’t want to slow things down – DUMB ME!  I very foolishly ignored the return of arteritis symptoms, initially very mild, on the 4^th day of my straight 7.5mg dosage.  By the 8^th day of straight 7.5mg dosage (last night), my scalp pain was at a 5-6 on a 10 point scale, and I had little sleep.  I will now have to go back to 10mg for several days until symptoms (hopefully) subside.  Then I will have to start the taper all over again. 

I will only be able to get off this evil medication if I pay attention to my body’s signals, and I have only made things worse by ignoring them.   A lesson learned, and not easily.  

Mice in the Kiva

In the not quite three years that we have lived in paradise, we have experienced a number of "critter invasions."  After all, we moved into their neighborhood, so what do we expect?  We've had rattlesnakes in my husband's shop, a barn owl in the old dog house, chipmunks in the garage, coyotes within 20 feet of the house, bulls at the front door, lizards in the bedrooms, etc.  And then there are the mice.  They can get into almost anything, but so far they haven't been in the house itself – although they have made it into the garage and were nesting behind a big planter in the sunroom.  They also crawled into the bathroom and dryer vents, despite the flipper covers.  Very easy for them to lift up those plastic flaps, and get into the area above the fans, and into the dryer vent.  After we discovered that problem two years ago, my husband put wire mesh cages around all the vents, so that problem went away.  Of course, the contractor said "I never had that happen before" when we showed him the desiccated, mummified remains of a mouse who hadn't made it out of a vent until after we put the cage up (it is still there as a reminder).  And I haven't mentioned the motorhome, I won't in this post.  We keep sealing the cracks that they use to get into the garage and sun room, and they keep finding more cracks.  It's a never ending battle.  Amazing how small a space they can squeeze through. 

Anyway, last week, after we got back from a quick trip to the north rim of the grand canyon (beautiful!), our younger dog kept looking at the "kiva" style fireplace in the corner of our living room, like there was something in it.  It was very windy, and we thought that maybe the wind was making strange noises in the vent (wrong!!).  The kiva is a propane direct vent fireplace – the heat gets in, and is fanned in, but the burners are sealed to the house and all of  the CO emissions are vented out.  The external part of the vent isn't on the roof, it takes a 90 degree angle and comes out on the east side of our back porch.  A few days earlier, while out on the porch after sundown,  I had chased a mouse off the vent.  But when we looked at the vent, it appeared that it had wire mesh on it so mice shouldn't be able to get into it.  Boy were we wrong yet again.  The exit portion is meshed, but the intake portion wasn't meshed at all.  Presumable there is only a very small open area in that vent –  not big enough for mice (hahaha).  Early the next morning (after our dog was so interested in the kiva) I was awakened at ~4am by a banging from the living room.  I found two mice  happily chewing at the fake logs behind the glass barrier in the fireplace – one of the smaller fake logs had been chewed from its base and was banging against the glass.  They didn't even care that I was shining a flashlight on them!  Oh the urge to just turn on the pilot light, and fire it up – but since they had chewed and damaged the logs, what if they had chewed something vital to the working of the fireplace, and I would blow our house up??  Plus there would be the smell of burning hair and little bodies….  When my husband awoke I told him the bad news.  As soon as it was "business hours" he was on the phone to the person who had installed the fireplace - he was appalled – he had "never heard of that happening before" (were we surprised?  NO!!).   He said he would come out to our house that evening.  During the day we had several "sightings" – as the mice would come into the glassed portion, and then run back into the vent – never more than two at a time, so thought there were only two (wrong yet again).  The installer came out that evening, disassembled the unit, and showed us how to open and close the glass.  He suggested a vacuum to get the mice out – well that got the chewed up debris and droppings, but it didn't get the mice.  So then we knew we would have to place traps.  He went outside, and put mesh around all entrance points in the vent so the mice that were inside wouldn't be able to escape, and (more importantly) more wouldn't be able to get in.  We then set traps.  We caught (killed) two that evening, and three the next day.  None since then, so we think they are gone.  The installer was going out of town for this holiday 4^th weekend, so he won't be back until next week to reassemble the unit and check out the burners, etc., to make sure they aren't damaged.  Meanwhile, we are leaving one trap set in it, just in case.

Just another day in paradise!

Prednisone - Seven Month Update

It's been a few days over seven months since I had to start taking prednisone for temporal arteritis.  The usual length of treatment is one to two years, so I'm either on the downswing or not even close to the midpoint.  I'm keeping a positive attitude (not easy on prednisone) and hope that I only have about five months of treatment remaining. 

How am I doing?  Not too bad, all things considered.  My immune markers (sed rate and C reactive protein) are normal.  I've been able to diet control my prednisone induced glucose intolerance so that my A1C is also normal.  I've lost about 30 pounds, because I've cut out sugars and almost all non-vegetable-based carbs from my diet.  My afib is being mostly controlled, albeit  not well controlled, by the increased doses of flecainide and metroprolol – the episodes, which occur every week to month, last from a few seconds to only a few minutes (except for the one on Mother's Day).  My cheeks are still puffy, but since I've lost so much weight only I can tell how puffy they actually are.  My waist still has the prednisone belly, but again, with the weight loss it isn't too obvious to others, especially in my loose clothing.  I am having episodes of gastric reflux, a few of which lead to aspiration, e.g., I am coughing the gastric contents from my bronchia.  I have to sleep inclined to decrease those episodes, but they occur about once a month.  The aciphex is "working" because I'm not having the awful heartburn, and throat burning that can accompany reflux, but my valve (lower esophageal sphincter) doesn't seem to be working very well due to the prednisone.  My face has some fuzzy hair growth, especially on my chin, above my lips (mustache), and by my ears (sideburns), but thank heavens it isn't dark growth (except for a few on the chin and above my lips).  While that hair is growing thicker, the hair on my head is thinning – and I don't have very much head hair to begin with!  I don't have any problem with blemishes on my face; I have actually seen improvement in my mild rosacea.  My arthritis and allergies remain much improved. 

My moods are still rocky.  I have hair-trigger emotional responses, but much of the time I can "catch" them before they erupt because I know they are prednisone-induced.  My memory is spotty, especially for individual words, with no warning when it will happen.  I just can't remember the word – I can describe the word and even google it to find it, but it is missing until I do.  It is similar to a "senior moment" but enhanced, and it really bothers me. 

I've made it to 12.5mg/day.  It took forever to get there, but I had gone through several months of high-level stress while I was trying to taper.  Stress increases the need for cortisol.  I'm a bit more stable now.   My doctor just gave me the go-ahead to start tapering to 10mg.  When I get there my immune markers will be tested again, then I will start for 7.5mg, and so on.  If everything goes well I might be off by late Fall (e.g., one year of treatment). 

I have yet to actually feel as good as I did before I started on prednisone.  However, I have  redefined what "feeling good" means to me, so there are many days now when I say I feel "good" (by my new definition).  I wonder if I'll ever be able to go back to the old definition and really feel good again….