I’ve been thinking about the idea of where the line is between  expressing my needs  in any given situation, knowing that most people are not geared to thinking about communication from the perspective of someone who is hard of hearing.  Many variables come up where my hearing loss is a big issue (especially in group situations) and on one hand, I think that if I speak up some people would appreciate the reminder and it would simplify things for me and allow me to participate in as much as possible.  On the other hand, I realize that everything is NOT about me and it shouldn’t be(and I don’t want it to be). Sometimes, I’m going to miss out no matter what, and that’s okay.   I don’t want people to feel badly if they forget and I don’t want to be or become self-centered.   I know there’s no hard fast rule that works in every scenario but I’m trying to figure this out in general.  I know that because my needs have changed,  this is a transition period and  I’m guessing that, at least around the people who I spend the most time with, we’ll all kind of find our groove with this.  It still is something I need to figure out.  There are so many things that even I didn’t know would be problems or challenges until this most recent episode of hearing loss, so I know others around me wouldn’t think of it, either.  Maybe it depends on what the “missing out” part actually is.  My first thought is that if it’s just about missing out on some fun or general conversation, I should probably just let it go…that would be more from a selfish standpoint of not wanting to miss out, although that stuff is a part of being involved in people’s lives and knowing what’s happening.  Maybe when it’s about something more practical, like in a restaurant or an office where I need to be able to interact, then I should be  more vocal.  Am I just over anlyzing it all, and need to step back and “go with the flow?” I would love to hear some thoughts from those of you reading my blog!  I don’t want to be self-centered.  I want to be able to function and interact to the best of my ability, too.  How do I balance those things?

I was thinking about how things went for me on the ladies’ trip I just took to Walnut Grove regarding my hearing.  In some ways, I’m getting used to my new deficits and between that and the improvement I’ve had (which makes many things easier), I’m starting to feel more “normal” with it all.  It’s not something I’m always thinking about anymore.  At the beginning, every situation was a new obstacle to overcome.  Now, I’ve learned how to handle most things that come up and I don’t have to think about things  so hard all of the time.  It makes me forget that there are still some real differences and they crop up at unexpected times and places.  Group dynamics are more difficult than one-on-one situations.  We had a group in my car for the drive and I missed most of what was said from the back seats (I was the driver) but when I needed to know, the person in the passenger seat next to me filled me in, and even though she had to repeat some things more than once, I was in on some of the conversation.  I found that when we were sitting together in restaurants in an even bigger group, I really couldn’t follow much of the conversation.  I kind of just had to sit back and let it happen around me.  I was basically okay with that.  I conversed with the ones closest to me and that worked out for the most part.  I’m still having to work at it because the background noise is amplified and very loud to me in a restaurant setting,  so I’m trying to hear a person talk over a lot of loud noise.  I have accepted the fact that in those situations, that is my new norm.  Yes, I’m missing out on some stuff, but I’m still there and it’s still fun to be with everyone.  There are some practical aspects of that that come up, though, that I’m not used to thinking about.  We were in a pizza place on our way back home, and reached the point where we were getting boxes for leftovers, etc.  Then we all were sitting there for quite a while.  I thought we were just waiting on the checks.  Someone asked me if I was going to order ice cream.  It turned out that they had ordered dessert and I was completely unaware of it.  I guess the waitress took orders while she was handing out boxes and things and I just missed it.  Apparently they were all waiting on the ice cream rather than checks, but it was taking a long time.  I decided to go ahead order some too, so I went up front to let them know (hoping it would save some time to have that in the works rather than wait for the absent waitress to return!).  I decided to go ahead and pay, too, again with the idea of saving time later.  After that, I found out that the others decided to get their ice cream  to go because it was taking so long and they didn’t want to wait anymore.  I probably wouldn’t have gotten any if I had know that, (it’s not that easy to eat ice cream with a spoon and drive at the same time).  It was frustrating for me because I was totally out of the loop and just didn’t know what was going on.  It was a hearing thing.  With all of my new awareness of how easy it is for me to miss or be mistaken about what’s happening because of my hearing, it was a bummer to me to have something like that come up.  Not the end of the world, I know.  But just a small example of normal every day things that crop up.    I guess I need to put more thought into how to handle those things in the future.  It’s actually more tricky than it might seem.  We all base our actions on what we perceive as reality.  The whole ice cream scenario wasn’t really a matter of me misunderstanding something that was said, it was a matter of me not knowing things that were said or happening around me.  You can’t really adjust for things you don’t know are happening.  The only way I could have known would be if I had seen the waitress talking and realized I needed to find out what was going on or if someone thought to fill me in.  Most people are not thinking in that way, because they aren’t dealing with this on a regular basis – very understandable.  I just didn’t happen to be looking or paying attention at the right moment in this case.  The question then becomes what can I do about it?  Should I remind people each time we sit down in a restaurant that they might have to fill me in on stuff like that because I could very well miss it?  I usually feel the need to explain to people when I first meet them that I have some problems with my hearing and I might speak too loudly or misunderstand or ask them to repeat several times, just so they understand what’s going on.  I’m not really sure how far to take that.  Maybe instead of reminding people in situations like the restaurant, I just have to try not to let it catch me too off guard  to find out I missed things and just try to be more flexible when things surprise me and go in a direction I’m not prepared for.  I’m not sure where the line is between when a reminder is helpful for others and will make things go more smoothly in a social setting and when I’m being repetitive and drawing attention to myself unnecessarily, or telling a person something they already were thinking about and already know.  I don’t want to make everything about me, but I know that most people I’m around are more than willing to make those adjustments that help me so much if they are thinking about it.   It just doesn’t always cross their minds.  I think I also just have to accept the fact that sometimes things are going to happen that are unavoidable and I will have to try to take them in stride when they do,  hopefully with a smile and a chuckle and a “it’s gonna happen sometimes” attitude.

It’s a  good reminder that we aren’t in control and can’t control everything around us.  We can’t even be prepared for every possible scenario.  What we can do is evaluate things that do happen and see if there is any way we can avoid those situations or handle them better in the future.  Once we’ve done that, it’s again a matter of not worrying about the things that are out of our control and trying to be flexible and handle them the best we can when they occur.  Good lesson for many areas of our lives.

I just got back from an overnight trip with some of the ladies from my home congregation.  We stayed in a hotel close to Walnut Grove, MN (about a 2 1/2 hour drive from my house) and spent some time seeing things from the perspective of Laura Ingalls Wilder.  Last night we went to a pageant (play) about her life (specifically some of the  stories she wrote about in her book On the Banks of Plum Creek)  then today spent time at the Laura Ingalls Wilder Museum and visited the site of her dugout home and saw where so much of her time was spent in and around Plum Creek.  It was interesting to see these things first hand. It makes you stop and realize how huge our homes are today in comparison.  The dugout home her family of 5 lived in is about half the size of my bedroom.  The family later built a home nearby and she talked about how wonderful it was and how spacious.  That home is also extremely small by our standards today (two rooms and an attic).  She was thrilled by things like real glass windows where the light could come in (after living underground!) and wood floors, a stove in the kitchen….things we take forgranted and don’t even really notice.  We got a glimpse of what daily life was like in the mid to late 1800s and early 1900s.  It took all day to do laundry and was a very labor-intensive task that involved several people. Animals needed daily tending.  The cow needed milking.  You made your own butter. You were dependent on how well your crops did to earn money and it took much work to farm your land.  You grew much of your own food and  made do with whatever food you could put up for the winter.  You patched your shoes several times over until they couldn’t be patched anymore or a child outgrew them.  The kids walked to school and Laura wrote about how exciting it was to live so close to town ….school was about 2 miles from their home and they walked most days!  Kids had daily chores to do – not just to teach them responsibility, but because the work needed to be done and they needed everyone in the family to pitch in.  There were times when her father had to leave for weeks (months) because he had to go where there was work to support his family.  During that time, her mother and the girls had to take care of all of the work and deal with any crisis that came along.   It is a great reminder of just how easy we have it today and how much we take forgranted.  We need to be thankful!  I think we also need to put some thought into what we are doing with all of the extra “free” time we have compared to what they had a hundred years ago. I image that Laura in her day could hardly imagine what it would be like to have such a break from the work of daily living.  I think she would see that extra time as extremely valuable.  What kind of value to do we place on our time?  I know that sometimes we feel we don’t have any extra time either, but why is that?  Are we using that time for things that matter or for superfluous or selfish things?  I think that we need to stop and honestly evaluate what we’re doing with our time.  There are many noble and worthwhile and responsible and necessary things to use it for, including using a portion of it for recreation so that we can renew ourselves and be ready to do more work.  Are we spending too much time in recreation?  Are we keeping a proper balance?  As we go through life, the demands on our time and the needs for our time change.  I think it’s worth stopping to evaluate fairly often so that we can make the adjustments we need to as we go along.  It’s okay to say “no” at times when asked to do things.  Sometimes we’re in a phase of life, for example, when we have small children at home, when we need to spend more of our time at home focused on our children, and adding more things (even noble ones, like teaching a class or organizing an activity) would take away from one of our primary responsibilities. There are other phases of life, when we have more time available and can take on those kinds of things.  We just have to make sure we’re being honest with ourselves about what we’re doing and what the purpose of it is.  Sometimes I ask myself if God was deciding whether to give me more time on earth based on how I’m using my time now, would He feel there would be any reason to give me more of it? Am I using it selfishly or wasting it?  Am I using it wisely and purposefully?  Am I making a difference in the kingdom?  These are some of the thoughts I left Walnut Grove with today. 

I worked on a new post for about an hour and a half yesterday and when I tried to publish it, I got a message saying “not valid.”  No idea why.  Then I made the mistake of clicking on the “help” button and “poof” the whole thing disappeared!  I laughed about it later when I realized the irony of the situation….I had included some info from a lesson I did for a ladies’ class last week about The Blessing of Trials….I guess I have more material for that now! lol

I’m still dealing with quite a few side effects from the prednisone.  I went down another level on my tapering on Friday and seem to have had an increase in side effects  when I change my dose.  I image that’s just part of the process.  I had pretty bad headaches over the weekend and mood swings, irritability (tried to be nice or at least not say much during that part 🙂  The good thing was that after 6 weeks of only sleeping for 4 or 4 1/2 hours a night, I did some catching up and was able to sleep more this weekend.  I thought that meant I was at a level of the drug where it might not affect my sleep so much, but last night I slept from 11:30pm until 2:30am, then couldn’t sleep at all until around 5:30am or 6am.  Then I slept until 10:30am!  I guess it will all straighten out in the end. Sleep is so elusive right now,  I feel like I need to let myself sleep whenever I can.  My face got even more puffy (who thought that was even possible!) but it is all worth it in the scheme of things.  In a few more weeks my body will be off the drugs and back to normal and the improvement in my hearing, although not a complete recovery, has made an enormous difference in my ability to function.  Worth every second of the side effects.  I’m thankful.

Just got back from a doctor’s appointment and hearing test and it’s more good news!  My hearing levels are the same, but my word comprehension has improved from 80% to 100%!  This is a huge deal!  The doctors were all cheering and high-fiving/hugging me and everyone is really thrilled that this treatment has been a success.  I’m thankful to God for his wisdom and guidance in this situation and for his providence that brought me to these doctors at this time with the latest information and knowledge about treatment. 

Last night I was asking for prayers for wisdom regarding how to proceed in the future.  At my last doctor’s appointment, Dr. Levine told me that I really need to weigh the benefits and risks of trying to treat a future episode.  The results from today made the answer obvious.  The benefits far outweigh the risks at this point and it’s pretty easy to see that it would be foolish not to try to recover any hearing lost in the future.  I’m always so thankful when the answers we seek are so obvious!  Apparently, there was a recent study done and although he said it’s complicated, the bottom line is that there have been some positive results from going with an extremely high dose of steroids (higher than was previously the norm for this type of situation) and a much slower, longer taper down off of the drug.  This is what he decided to try on my this time, and it worked!  This is also the first time he’s prescribed an anti-viral drug along with it.  He seems to lean more toward the steroid change as the thing that worked, but I will insist on doing everything exactly the same next time since we don’t know for sure which part made the difference.  I also had four steroid injections in the eardrum vs. the standard three.  There clearly was additional benefit for me with the 4th one, so that will likely be part of the regime next time as well. 

As far as my function in day to day life, I’m in a good place right now.  Without hearing aids, there is a definite and very noticeable difference in how well I hear now vs. before the May episode.  I can hear some sound and occasionally figure out what is being said, but basically I can’t interact much with others without hearing aids any more.  I could before. I’m definitely dependent on them now.  With hearing aids, there is a noticeable improvement in my ability to follow conversations.  I don’t have to strain to hear what’s being said in quieter settings, the hearing aids go loud enough to allow me a more comfortable volume.  One of the hardest things for me was the loss of any human quality to voices.  Things were completely monotone and mechanical sounding.  Voices now sound human again.  This is a huge deal in the quality of life category.  Could I get by the other way and be grateful that to hear sound and follow conversation?  Absolutely.  Am I thrilled to have voices sound like people I know and love again and feel like I’m talking to people rather than “machines”…ABSOLUTELY.  This is a big deal to me.  I’m thankful. 

My next follow-up appointment is in three months.  The doctor wants to check my hearing again and touch base with me after I’ve finished tapering off of the steroids.  If I notice any problems with my hearing along the way, I am to call immediately and they will increase my dose again and slow down the taper.  Once I’m totally off the drugs, we’ll see how stable things are.  I also have an appointment in three weeks with the audiology department to discuss options for getting my hearing aids working better for me.  We’ll discuss new technology that’s out there as well as consider whether the hearing aids I have now are capable of doing more to help me and if we can tweak and improve the quality of sound they offer and improve my ability to function.  I’ve been dealing with a lot of feedback problems with them and swelling in my ears from the steroids could be contributing to that, so we have to wait a few weeks and give me a chance to have some of the major puffiness I have going on decrease! 

Today’s results could possibly mean that even with future episodes, my hearing might not ever be any worse than it  is now.  Before today, it seemed the odds were very high that I would be profoundly deaf within the next few years.  As always, the bottom line is that God is in control and none of us knows what the future holds.  I will continue to trust in Him and His wisdom and I will adjust and adapt to whatever my circumstances.  I don’t know why things have happened the way they have for me, and I don’t really care why.  I’m going to take whatever lessons and insight I can from this experience and apply them.  I’m still going to do what I can to prepare myself for whatever possibilities the future holds.  I have a computer program to help me do some training to improve my speech reading skills.  I found an instructor who teaches interactive American Sign Language classes on site and have arranged for her to teach a class at our church building.  I’m thrilled that that we have 24 people signed up to take it which is a full class!  My eyes have been opened to so much throughout this latest episode.  I’ve had a glimpse into the world of deafness that has forever changed me.  I never realized how great the impact is in every part of life for someone who is deaf or very hard of hearing.  Even with incredible support it is isolating and there are so many who do not have the kind of support I’ve been blessed with.  My heart will forever be sensitive to those who are there.  I’ve learned a lot about myself and have been humbled in some ways and allowed to see so very many blessings I hadn’t ever thought of before.   I’ve always wanted to write and this has got me thinking about and actually starting to write a bit.  It has given me new ideas about ways I can serve others and new directions to go in my life.  Whatever happens, it’s a blessing and I want to thank all of you for your love and prayers and support.  It has meant so much to me!

If you’re a christian, you are quite familiar with the concept of letting go of self.  We all start out in life as little babies who are completely selfish…we only are aware of our own needs (hungry,tired, uncomfortable, need attention!) and as we grow and mature we develop an awareness of others and a new and ever-changing picture of ourselves and our place in the world.  It reminds me of zooming out on a map.  You start completely zoomed in on the tiniest spot and that’s all you see.  The image is very detailed on that spot and very focused.  You see every street in that little town and can get so focused that you are only looking at one individual house!  Then you click the “zoom out” button, and suddenly find that there’s more to see than you realized.  Maybe there’s a lake nearby, that you were completely unaware of.  Maybe the town is smaller (or bigger) than you thought.  Then you click it again, and you find the same thing.  The lake is one of several and there’s a state park there, too.  You didn’t realize that the Canadian border is only 30 miles away…The picture you see gets bigger and bigger and you see that original tiny spot from a different perspective.  Nothing about that picture changed, just your view of it.  As we grow from infants into adults, we mentally keep zooming out and discovering new perspective and insight on how we fit into the big picture of life.  When we become christians, we make a choice to give up ourselves and to dedicate our lives to glorifying God and serving others.  That means putting God and His will first.  That means putting others ahead of ourselves.  That means letting go of self.  We know that, and we strive for it.  It’s easier said than done.  I love the hymn “None of Self, and All of Thee” that describes the process so well.  I think that even when we’re trying our best, we still hang on to some selfishness.  I’ve found that losing my hearing is just exactly what I needed.  I think it’s helping me to let go of myself a little bit more.  There’s a certain amount of “I’m right” that I’ve hung on to and I’m being forced to accept the fact that these days (and probably before, too!) it’s not that unusual for me to be the one that’s wrong!  I misheard something, or acted on what I thought was happening when my perception was wrong.  I anticipated that someone would view things, intend things, act the way I would in a given situation and reacted accordingly, when the reality is that they were coming from a direction I had not thought of or anticipated.  In that case, it’s MY words that don’t make sense or cause the problem!  When we hold on to a sense of “rightness”  (should we really call it self-righteousness?) doesn’t that also cause us to be very defensive when we are questioned?  How many of us react defensively and “put up walls” when someone questions our opinions about things or even (gasp) suggests that we might be wrong about something?  Letting go, and allowing for the possibility that we don’t know everything and we aren’t right about everything is actually very freeing!  You can be completely open and attentive without feeling defensive or mentally moving on beyond that moment.  Suddenly you are actually listening and have the wonderful opportunity to consider the words you are hearing.  You have the opportunity to get more information , more insight, more understanding about something!   Everything you hear won’t be correct or accurate, but it is my opinion that stopping to think about things is always a good thing.  Sometimes, you conclude that what you thought about something was right, but you now have a better understanding of why you believe what you believe.  Sometimes, you find that what you believed was wrong.  You never thought much about it before and now that you have looked at it again and considered other aspects of it, you find that your eyes have been opened and you need to change your thinking.  What a huge blessing that is!!  We have to be open to it, using God’s word as the standard by which we consider things. There are  so many scriptures that talk about how foolish it is to rely on our own thoughts and opinions and how important it is to seek wise counsel when we need it, and to listen to reproof and correction.  There are also so very many that talk about how important it is to seek wisdom and have understanding.

Proverbs 14:12:  There is a way which seems right to a man, but it’s end is the way of death.

Proverbs 12:15:  The way of a fool is right in his own eyes, but a wise man is he who listens to counsel.

Proverbs 4:13: Take hold of instruction, do not let go.  Guard her, for she is your life.

Proverbs 5:12:  And you say, “How I have hated instruction!  And my heart spurned reproof!  I have not listened to the voice of my teachers, nor inclined my ear to my instructors!  I was almost in utter ruin in the midst of the assembly and congregation.”

Psalm 111:10:  The fear of the Lord is the beginning of wisdom; a good understanding have all those who do His commandments; His praise endures forever.

I’m thankful that God molds us and shapes us throughout our lives and knows exactly what we need.  I’m thankful for the experience I’m having now with my hearing and the lessons I’m learning from it.  It’s all a matter of perspective.

I have noticed more side effects from the prednisone this week.  The high energy I described before is no longer happening. I’m feeling more normal regarding my level of energy.  Still have to rest more (as in catch my breath) because of the amount of fluid I’m retaining and how it’s slowing me down.  I’m still sleeping about four to four and a half hours a night, although I was able to sleep longer some nights on the trip.   I typically notice my ankles swell for a few days when I travel and that happened on this trip, too, but my face also swelled up along with them!  It’s still pretty puffy.  My shortness of breath was a definite and significant issue for trying to hike around…I couldn’t go very far before I was working at getting my breath.   I also found that in the evenings when we were settling in to watch a movie or something that it was quite difficult for me to cool down to a normal temperature.  I eventually found that putting some ice cubes in a paper towel and rubbing them over my face and neck for 10 minutes or so did the trick best, then I was ok for the rest of the evening.  I was showering or taking baths in the evening after all that sweating and hiking so I’m guessing it’s an issue with regulating body temp from the heat of the bathing.   Another side effect of prednisone is that your body can redistribute body fat or add it in unusual ways….especially around the neck and face (they call it the steroid “moonface”) and a “buffalo hump” on the back of the neck, as well as in your midsection and other “odd” spots in ways that aren’t typical.  In the past I’ve had fairly minor issues with these, but this time it’s more pronounced.  Your appetite increases, too, which obviously adds to the problem.  I was on the same oral dose this round but for a longer period of time, and I had 2 more injections of steroid than I’ve ever had, so I guess it shouldn’t be surprising.  It was and is all worth it, though, considering that I’ve regained some hearing.  I will need to think about how to handle future episodes and whether the benefit outweighs the potential risks.  There are a lot of things that can still happen with side effects, and even though I have begun to taper off the drug, I still have a couple of months to go before I’m totally off of it. I’ve read that even after you stop taking steroids, some people can still have some in their systems for up to a year.   While you are taking prednisone, your adrenal glands atrophy to some extent, and the purpose of the taper is to give them a chance to start functioning properly and do the job they are supposed to do.  Sometimes there are issues getting them going again and that can lead to problems, as well.  Maybe I’m noticing more side effects due to the tapering and it’s just part of the process of getting those glands working again on their own.  They had a month to atrophy, so it might take some time to start going again.  I’m mentally doing okay with it all.  It’s weird seeing your face change like that, but I understand the what and the why of it, so I’m not freaking out.  I’m feeling thankful, actually, that I’m not experiencing more of the possible side effects.  There are a lot of them and some can be quite serious.  I think it’s a good time to remind myself that this body is just the house that I live in.  I can do some “repairs” and “remodeling” when it’s practical to do so! 🙂   The things that matter aren’t affected by these minor inconveniences.

Sorry to have “dropped off the face of the earth” here.  We went on vacation and I had hoped to blog from my Nook.  It didn’t work out.  Chet and I spent a few days together up on the North Shore of Minnesota/Lake Superior.  We did some hiking, bird watching (very few to be seen) and spent a day up in Canada.  We checked out some fun new restaurants and enjoyed some beautiful scenery and time away together.  Then we were joined by our close friends (and frequent travel buddies!) and spent more time visiting state parks, hiking, canoeing in the Boundary Water Canoe Area (yes, I tipped the canoe and we took a little unexpected dip in some pristine Canadian waters!) , riding ATVs, and just generally enjoying some down time from our very busy lives!  We spent our last day/night in Duluth and toured the Glensheen Estate and stayed in a very cool hotel with a view of the aerial lift bridge.  It’s pretty spectacular all lit up at night!  As always, communication is something on my mind, even on vacation.  The day we rode ATVs (my first time!) we stopped for a short break along the trail and got off and stretched our legs.  Chet was taking a couple of photographs and I asked him to take one of me on the machine.  I just wanted him to snap a shot when I was back on so I’d have a pic of that!  He said ok, but I thought it was odd that he didn’t take one right away.  I figured he’d just do it later.  When we finished riding I specifically asked him to take the picture again since he still hadn’t done it.  Didn’t think anymore about it until the next morning.  We were having coffee on the deck and he was telling me about how he had been working at taking photos of me along the trail but it was pretty difficult to ride and snap photos at the same time.  Chet was behind me in the line of ATVs so he was taking pics of me riding from the back.  I had no idea this was going on!  I wasn’t even sure if I wanted to see those 🙂 Turns out that when I asked him to take a picture of me on the machine, he thought I wanted “action” shots of me riding the thing!  Once we figured out what had happened, he told me that if there’s ever a time that I ask him to do something and then think he behaves in a way that is “odd” or “unexpected” that should be a good clue that there might be some miscommunication going on and we should clarify.  I agreed.  That is a good rule of thumb.  I also added one of my own…..if there’s ever I time that he thinks that I asked him to photograph me from the backside, that should be a good clue that there might be some miscommunication going on and we should clarify!  With the exception of a possible before and after weight loss photo, there is NEVER going to be a time that I will ASK him to photograph me from that view!!!!!  LOL 

Shock and awe pretty much sums up how I feel right now.  I just got home from an afternoon at the doctor’s and for the first time in 12 years there has actually been improvement in my hearing!

I’ve noticed over the last couple of days that my own voice sounds a little louder than it did and that I seem to be following conversations a little better than I was earlier last week.  I also noticed what seemed to be a slight improvement at church yesterday.  I really wasn’t positive – it’s so subjective and I wasn’t sure if I was just getting used to things, or maybe my hearing aids were being sporadic.  I was pretty sure there was some improvement,  I just wouldn’t let myself count on it until I had a hearing test.  The news was really great today.  I’ve actually regained nearly 25 decibels in some tones!  That means that some of what I lost is back to within a couple of decibels of what it was before this latest episode!  I’ve also noticed an improvement in the distortion.  Voices still sound distorted, but there is some human quality to what I’m hearing again and I can sometimes distinguish whose voice I’m listening to. I do still have losses in some tones from this episode, but what I have regained is definitely helping me.

I had to make some decisions today about how to move forward from this point.  Prior to this appointment, I’d already had 3 steroid injections in my eardrum, and that is the maximum that they generally use.  There is some risk that the hole created in my eardrum by the needle won’t heal.  That risk increases the longer it’s there (they use the same hole for each injection, so it’s been open for nearly a month now).  He did say they can surgically repair that when necessary.  (Interesting side note:  I mentioned that I’m having a lot of problems with feedback with my hearing aids and he said that the hole in the eardrum is probably the cause of that!  I had no idea!)  There are also serious side effects that become more of a risk the longer you are on high doses of steroids.  We had to weigh the benefits and the risks before we decided how to proceed today.  The doctor basically left it up to me.  I decided that it was worth one more injection …something is working this time and even small improvements make a big difference for me and my ability to function at this point.  We’re outside of normal protocol here and there’s no way to know if I will have any additional benefit.  He also told me that I need to be thinking about what  course of action I want to pursue when the next episode occurs.  Again, I need to weigh benefits vs. risk.  The assumption is that these episodes will continue and the next one or two will likely take me into the profoundly deaf range.  I’ll be thinking about that, researching it, and praying about it.  Right now my feeling is why not try?  I guess it could depend on whether the next episode is in 2 years or 2 weeks.  This is new territory for me.  I asked if it’s typical for the improvement when it happens to be stable or if there’s a chance that as soon as we stop treatment it will be gone again.  He said there is no way to know that.  We’ll just have to wait and see.

I’m really almost in shock right now.  I’m very very thankful to God for this blessing and give Him the praise and the glory for what has taken place. I’m thankful for His providence that has brought me to this doctor and for the medical knowledge and skill that he has.   I’m also very thankful for the technology that is available that makes such a difference in my ability to function.  I know that we only have these things because God has allowed it.   I still don’t know what the future holds, but like the saying goes, I know who holds the future.  I’m thankful for the results today.  I’ll be thankful tomorrow, whatever tomorrow brings!

I also want to thank all of you from the bottom of my heart for your prayers and your continuing encouragement.  I can’t tell you how much it means to me and how much difference it makes as I continue on this journey.

Life can get pretty interesting when you’re taking high doses of steroids.  In general, I’m pretty fortunate. I don’t have too many major side effects.  My face is flushed most of the time and I’m sweating  more than normal.  I am retaining a lot of fluid and can tell it’s harder on my system to carry that around (I’m out of breath much more easily than normal.)  The main thing I notice is that the steroids affect my sleep and energy.  I mentioned that the first couple of weeks after all of this happened to me, I was very exhausted almost all the time.  I think it was mostly due to  the mental toll of all that was happening and the newness of it all.  I think it might have taken some time for the drugs to build up in my system, but now I’m experiencing the opposite.  I’m only able to sleep for about 4.5 hours a night, but that’s really all I feel like I need.  It’s weird.  I’ll fall asleep around 12 or 1am and then wake up again around 5 or so.  If I can’t go back to sleep I’ll read or something and see if that makes me sleepy.  Usually it doesn’t and after a while I’ll get up and start my day.  If you know me at all, you know I’ve never been a morning person, but along with the lessened need for sleep I’m also having huge bursts of energy!  Not just “feel like doing stuff” bursts, but really DRIVEN to do stuff bursts!  It’s crazy.  On Saturday I was obsessed with moving furniture around in my living room (by myself – I have multiple scratches and bruises to show for my aggressive efforts), throwing away an old couch that I hate and deep cleaning everything!  I’m usually more of the mindset that males have stronger muscles and can do  heavy lifting and moving with much less effort so the “normal me” is probably going  to ask for help moving stuff, but this time ” I wanted it done and I wanted it done now and I’m going to get it done!!!!!  – stop – breathe – ”  I also felt the need on that same day to remove all of the drawers in my dresser and move the whole thing out from the wall, and dust and vacuum……and the same with my nightstand……changing sheets on beds and doing laundry…..My house is in great shape (today anyhow)!  I figure if I’m in that mode I’d better take advantage of it.  I’m not normally a person that feels the need to rearrange furniture too often!  (or deep clean for that matter! lol)  I would have thought after all of that physical effort and hard work  that I would have been really tired that evening.  Not so.  I had to take a lot of short breaks while I was working to catch my breath and cool off, but at the end of the day I had just as much energy as the beginning and still wasn’t sleepy at all until 12am and still was rested enough after only a few hours! It’s that way from the time I wake up until I go to bed.  I feel driven to find stuff that needs doing.  I think I’ll take advantage of this and get as much done as I possibly can while I’m still on the drugs.  Not sure how much longer that will be.  I have a hearing test tomorrow at 1pm and then an appointment with the doctor.  I’ll let you know how it goes.

On a different note, last night while I was reading my Bible I finished a book and sort of randomly decided to read Proverbs through.  Here’s the thought that stood out  boldly to me in light of all that is going on in my life and the things I’ve been talking about here on this blog:

Proverbs 2:1-5:  My son, if you will receive my words and treasure my commandments within you,  make your ear attentive to wisdom, incline your heart to understanding;  for if you cry for discernment, lift your voice for understanding;  if you seek her as silver and search for her as for hidden treasures;  then you will discern the fear of the Lord and discover the knowledge of God.

I see this from a fresh perspective today and I couldn’t have come up with a thought that was more relevant to me right now than this one.  I loved it and wanted to share!