The Path

April 1, 2019

It’s kind of shocking that I have not written on this page since October 2015. It’s hard to catch up on that much time, when so much has happened.  We are still aging healthwise. That much has not changed.

In spite of all the frantic travel in 2015, I’m happy to report that I finally ceased to need the eye injections. The doctor was pleased and surprised, since it’s rare that someone recovers from RBVO.  It was because of getting my blood pressure down consistently. I beleive I was able to do that by getting my work situation in hand. Actually, I quit.  That really helped with reducing stress.

The major changes in my life have not been due to my health but to my husband’s health. I have blogged about this at length and won’t repeat it here, except to say that he has a diagnosis of Lewy Body Dementia. It became apparent about the time he retired, so not exactly his retirement dream.

We put all our things in storage in North Carolina, and put the house in Florida up for sale in the summer of 2018.  We sold our vehicles and bought a used 2016 truck and a trailer and took a few things up to Wisconsin. We moved in with Mom,  more just to keep her company than anything else.

It was after that move that the husband and I went to Mayo Clinic for a week of testing and the diagnosis. Since then we have returned a couple of times for sleep tests, eye tests and a LBD Summit.

My blood pressure is going up again, This time it doesn’t seem to be responding to exercise or weight control – I haven’t really changed in my weight for a long time.  I’ve had a strange knee problem as well, starting with an acute, painful episode a couple months ago. Since then it has returned to near normal but still feels tight at times and sore with certain movements. This worries me because I have a hike coming up in May at the Grand Canyon that I don’t want to miss.

Probably connected to the blood pressure being higher – my ears have developed tinnitus, pulsate tinnitus specifically. I’ve also had lots of headaches, and sinus problems. Some days I feel like a wreck, for sure.

I’ve been wearing a Push orthopedic brace on my left thumb for a couple  years now. The arthritis is so bad that it’s hard to go without that stabilization. I don’t think I want surgery – haven’t heard too many good reports about that.  I still have other painful joints on my hands but I’m getting along in spite of it. I use my hands all the time.

I don’t like the way my skin is aging, or the fact that it’s hard to sleep comfortably, or that I’m not as flexible, or…. many other things. Getting old is still better than dying, but not by much. I’ve come to think that being dead is not the worst thing that could happen (depending on how it happens I guess).

I have a doctor’s appointment this week.  I’ll know more then.

July 1, 2014

I’m pretty much a realist when it comes to admitting my limitations, my vulnerabilities, my humanity.  But lately I’m aware of that part of me that hung on to the invincibility myth.  I’ve been very close to people who were going through hard things and felt great compassion, but always knowing that I wasn’t having their experience.  I’ve often wondered when something bad would happen to me because I’m past the half century mark and have pretty much escaped tragedy – the kind I see happening all around me.  I’ve imagined bad things happening in an attempt to prepare myself for the inevitable.  I don’t think that works very well.

I wrote a post about finally starting a health check-up this summer after a long period of neglect (here).  I need to write things down as this progresses, to keep track of my feelings, my decisions, and my reasons.  Things are not going as smoothly as they have in the past.  I’m getting older and I suppose some changes are to be expected, but I am surprised at the shift I’m having to make in my thinking.

I’ve been the younger one, the more active one, the one with more energy, the one who is supposed to take care of other people.  What!?  I have problems that aren’t going to be solved with an ibuprofen? Wait a minute… The waiting is hard – waiting on the system.  A couple of weeks ago I had a routine mammogram.  They took more pictures of one side than the other.  After a week I had a doctor’s appointment and found out that more/better visualization was recommended, but the doctor found no cause for alarm with the physical exam.  Yesterday I had the more/better part.  The technician had me wait while she took the views to be read by the radiologist.  She came back to do another attempt at more/better and again had me wait.  This time she just told me I was finished and my doctor would get the results in a few days.  There was no attempt to lessen my anxiety, which of course has been increasing.

I’m clear on some things.  I’m pretty sure I’m going to die someday of something – it’s weird to think about it but I accept it.  There are actually days I look forward to it.  My anxiety is more about the path I take to get there.  Whether tomorrow’s report shows nothing to worry about, or the worst possible thing, I will be demonstrating by my behavior what I think of God.  I will be getting a chance to demonstrate his goodness, his care, and anything else I know about him.  And it will have to be regardless of my circumstances since I know I am not immune to any of the evil in this world, be it pain, injustice, persecution, depression.  Because I ally with Christ I’m told I can expect all of that. The mammogram is not the only test result that isn’t quite right but it is the one I’m dealing with today.  It’s enough.

July 2, 2014

Today a welcome respite – an afternoon by the pool with my friend, who always waits on me hand and foot with such hospitality.  She’s an expert.  We talked about my mammogram experience.  She said that happens to her all the time.  Not only do they take extra views, and take them over again and make her wait while they check, they usually do an ultrasound on her as well.  Because she  normally has some cystic densities that they watch.  I felt a little bit better after hearing this.  At least they didn’t insist I have an  ultrasound so maybe they didn’t need that to make a decision.  The difference of course is that I have never had cystic problems so this is a change for me.  But I do feel less anxious and am grateful for that.

July 3, 2014

Retinal branch vein occlusion.  I knew there was something wrong with my eyesight.  The doctor said she was really glad I had decided to have a check mid-year.  I knew immediately during the exam that there was something unusual – the way she went through the normal procedure on one eye and then a very different slow look and repeat on the other one.

I’m always afraid that I’ll have signs of macular degeneration starting which is why I scheduled this extra exam.  I started having a lot of trouble a few weeks ago and lots more floaters in my vision.  When it didn’t get better I needed some peace of mind.  I’m thankful there is something I can do about my paranoia since it is always pretty easy to get into the eye doctor for an exam.

So now I have another appointment next week with the retina specialist.  There has been a break in a vein which has caused a hemorrhage and swelling in the retina.  It has nothing to do with macular degeneration and will probably resolve on its own.  The question is whether it was caused by my blood pressure being high.  That’s what the specialist will try to determine. And I have been worried about my blood pressure.  It’s always been low in the 90/60 range, but lately it’s been 130/80.  That still sounds pretty normal for some people, but again, it’s not normal for me.  What’s behind all these changes?

July 10, 2014

Yesterday I saw the retina specialist.  It took about two hours for the whole re-testing of everything that was done at the optometrist last week.  The photos of the back of my eye were more detailed and there were charts showing the thickness of the retina and the places where fluid had leaked into it causing edema.  The swollen area was close to the macula but not in it so my central vision hasn’t been affected.  According to my specialist, waiting for the problem to resolve is not the option that’s best.  So  now I am scheduled for vitreal injection next Tuesday, after my colonoscopy.

It is so great that I don’t have to mess up two days having invasive procedures and being at the mercy of health practitioners.  If only I can recover from anesthesia and manage to look and feel normal enough to go and have a needle stuck in my eyeball. I had a choice between a drug that costs $2000 per injection and one that is similar but costs $100.  This is supposedly something that will have to be done repeatedly since it will likely recur.  Which drug should I choose?  Hmmm… let me think about that.

I am going to do anything I can think of to lower my blood pressure.  It responds a lot to diet and lifestyle changes so I should be able to make a difference.  The other possible causes of the retina problem are autoimmune disorder and diabetes.  It has been suggested that I have a lab work-up for those. On the bright side, my mammogram did not show evidence of malignancy and the only recommendation is to have it repeated yearly.  I have had a headache most of the day and feel either feverish or temperature challenged by hormones.  Hoping for a better day tomorrow, but still thankful because things could be so much worse.

July 16, 2014

I am sitting in my writing room this morning, with my cup of coffee.  It’s just beginning to be light and I see it changing minute by minute.  I have a double sliding glass door and the table that serves as my desk is parked right in front of it.  I have a clear view of the oak forest and the back half of the oneacrewoods.  I’ve fed Gray Kitty and I always leave the door open a few inches because I know she will want to go out for a bit.  It isn’t raining now but it did last night and it’s quite wet out there. I’ve already been out with the flashlight to set the irrigation on rain delay so it won’t run all morning. I have a mild headache – hoping the coffee will help- and my left eye feels swollen a little and scratchy if I blink too much.

I have to say that the worst part of yesterday was the intravitreous injection. The colonoscopy experience has come a long way towards being spa-like because they keep you ignorant of the actual procedure.  Everyone is so attentive, and there are a lot of them. The admitting nurse who starts your IV and gives you a warm blanket, the anesthesiologist, the nurse anesthetist (“I’ll be in charge of your nap” she said.), the gastroenterologist, the nurse assisting her, the two recovery nurses who give you juice and crackers, the nurse who walks you out the door and gives you a carnation. .. what a crew.  There is literally no pain or discomfort until after the procedure when you are full of air and that doesn’t last long.

On the other hand, the eye injection was followed by hours of burning and a sensation like having sand tossed in the eye.  I was told it was the antiseptic.  There’s just something about it – when my eyes are involved my whole body feels impaired.  The injection hurt a little more than I anticipated but that’s probably because I wanted to believe what I’d heard about it being “nothing” and “over before you can count to 1”. But here I am, on the other side of it all thanks to the passage of time.

Nothing deadly showed up in either procedure and today I can rest and turn my attention to other things.  I need to find me some fun and that shouldn’t be hard.

July 20,2014

Thursday morning the primary doctor’s office actually called me – that’s a first.  They said Dr. Daniella (first name) had seen my report from the ophthalmologist and wanted me to come in for a follow-up.   I got an appointment the same day.  I am so impressed. So we decided on a few more tests to run to see what might be causing the eye problem.  I told her about my blood pressure being higher in one arm than the other almost all the time and she had that checked too.  I go back this Thursday to have a cardiac sonogram. Never had one of those before.  I haven’t had the lab tests done yet because I don’t want to go to the  VERY EXPENSIVE lab that I went to last time, which the insurance covered not one cent of the bill.

Having nothing to do with all these explorations, but a lot to do with how I feel, I have gotten a cold and laryngitis.  For the last three days I’ve barely been able to speak, and it takes very little to trigger a coughing spell.  I mentioned this in a couple posts this week – see home page.  And even though I’m not feeling well, all these strange happenings with the tenants, with my employer, with our friend Jack, are transpiring and I’m getting through them.  Yesterday I gave up and took something for my headache and felt really quite good afterwards. Made me realize how much I miss my ibuprofen.  Oh well.

July 25, 2014

The sonogram was interesting.  The technician said she had studied four years at Yale for her certification and then another two years for special areas, like cardiac.  Sounds almost like a doctor to me.  And it must not make any difference if the subject talks because she kept asking me questions about myself, my family, everything, until I became a bit self-conscious and decided to get back at her.  She was  pretty, intelligent and spent quite a bit of time trying to see if there was anything abnormal with my heart or the blood vessels to my arms – anything that would account for the difference in blood pressure readings.  It took a long time because she wasn’t finding anything.  Actually what she said was she was just finding the normal stuff, whatever that means.  I’ll find out the next time I see the primary doc for test results.  She did say there were no aliens present.

July 26, 2014

Meanwhile, what was laryngitis two weeks ago, improved for a while but has now come back for a second round.  Something about this reminds me of last year in Cambodia – it was bacterial and responded to antibiotics.  I have some Cipro left and started taking it this morning.  So tired of coughing, and trying to hold it back at work.  Need to feel better.

July 29, 2014

Another work day behind a soggy mask, trying to breathe without coughing.  I can’t really say that things have changed much and it’s possible that I am even worse.  Today I am getting the extra lab tests that the doctor ordered at my last appointment.  I decided to go to Any Lab Test Now because their prices are reasonable and I need that since I am paying out of pocket.  Evidently my insurance does not cover these things.  These tests are the initial search for the cause of whatever made the blood vessel in my eye rupture.  Is it a hypertension issue or an autoimmune problem?  I found it interesting to see that they offer a fibromyalgia panel of tests and some of the ones ordered for me were on that list.   I have to keep reminding myself why I’m doing all this.  It’s only two weeks until I’m scheduled to have another intravitreal injection (shot in the eye).  NOT looking forward to that.

August 7, 2014

This is day 23 of coughing and bronchial spasms and just not feeling strong or well.  I’ve gone to work and done normal home duties but this morning it just was plain to me that I was not improving.  Add to that, I woke up with a sudden blockage in my hearing on one side that actually made me feel unbalanced. This was unexpected and brand new so I made an appointment to see my primary doctor – they got me in at 1 pm.  Probably because I’ve had three weeks of being sick and somewhat dehydrated my ears were 80 and 90% blocked with wax and had to be flushed out.  I guess I could have done that myself if I had known that’s all it was.  The doctor felt that I needed to lessen inflammation in my respiratory tract so she gave me a prednisone pack.  But in case that’s not all it is, she also ordered another antibiotic.  I will wait and see how I feel after starting the prednisone.  I’m really tired of hardly being able to breathe without coughing and having to leave social environments because of my spells of gagging and nearly turning inside out trying to clear my lungs.  Enough.

August 8, 2014 

I mowed the lawn early this morning and as usual it was very dusty.  I’m beginning to wonder if my days of difficult breathing correlate with this activity, maybe a beginning allergy to all the pollens, etc… ?  No noticeable improvement after loading up on the prednisone so I also started the antibiotic.  Like my animal doctor daughter said, I don’t want to knock out the immune system if there is an underlying infection that an antibiotic  needs to address.   I have  been watching my little Gracie, who is my third cousin perhaps? and I’m trying not to look too sick around her but I am really tired.

August 9, 2014 

I think the antibiotic helped.  I have  spent nearly the whole day in the pool with Gracie and  haven’t had much trouble coughing in spite of the water and sun exposure.  I did however, skin my nose and chin on the bottom of the pool.  A few nice little scabs…

August 12, 2014

Continuing to feel a little more safe but not completely confident of my voice, or cough control.  Decided to postpone the eye injection.  Wouldn’t be too good to have a coughing fit in the middle of it.  (Plus, I would do anything not to have to do it at all so a postponement is fine with me…).  Looking forward to a quiet day at home.  So thankful.

September 12, 2014

The second intraocular injection was  a little less scary, less painful and quite encouraging.  The detailed picture of the back of my eye, taken before the injection, showed dramatic (that’s the word the doctor used) improvement.  The swelling had receded except for one small area at the edge of the bleed.  Because of this the time between shots is being lengthened to five weeks.  There is no way to know for sure that the drug is what caused the improvement but since the only side effect seems to have been on my wallet ($$$) I am satisfied to continue treatment. Better safe than sorry.  How I would miss my eyesight if I lost it!

I am still not sure that my breathing is clear, a cough lingers.  Aches a pains: I jumped off the bed of the pickup truck, holding on to the side as I did it, and re-injured my shoulder. It’s probably a rotator cuff tear that I keep reopening.  On the good side, my hands have gotten out of the inflammation stage and although the knuckles are still swollen they aren’t red and painful.  I don’t know what makes these changes occur but it reassures me that if I can wait long enough, the pain might go away.

Next on the list is my thyroid consult on the 25th of this month.  If there are changes in the nodules they will do a biopsy and they’ve already told me how much it will cost. (sigh) They do not take my insurance and want to make sure I am prepared to pay them.  How thoughtful.

October 27,2014

I’ve gotten behind in my narrative.  The week of September 15 I worked for my employer several days. Toward the end of that week I went out to check on her place in her absence and discovered a large limb had fallen off a tree on her pool equipment so I found some loppers and took off some large branches.  I don’t even know for sure that this started the problem but that weekend I had a pain crisis that I couldn’t solve myself.  My shoulder was inconsolable no matter how I positioned it.  I went to urgent care and had x-rays and got pain meds to get me through until the next Wednesday when I was able to get an appointment with an orthopedist.  I had to cancel working for my employer on Monday and Tuesday – just couldn’t do it – and had to tell her that I wouldn’t be doing her routine care anymore.  This was a big move for me.  I have stuck to it.

That same week on 9/23 I had the third intraocular injection.  That condition continues to improve so the time to the next injection was lengthened to six weeks.

The orthopedic appointment on 9/24  consisted of more x-rays.  They showed something called calcific tendonitis of the rotator cuff to be responsible for my pain.  I made an appointment to have “needling” done, which is a process of having two needles inserted one of which scrapes the calcification off the bone and the other one sucks out the fragments and debris.  After reading about it online and learning that the condition does resolve on it’s own frequently, I cancelled the appointment.  Instead, Dennis and I went up to spend the weekend in Jacksonville with Julie.  Rest and the pain meds did the trick for me and I’m now out of pain, although still a bit fragile.

My next adventure was last week.  October 23 I went to the thyroid specialist to get the nodules checked out.  Such a different medical office (big, empty, hmm…). The young woman doctor did an ultrasound on my thyroid, which I expected and then wanted to biopsy the nodules to know what was in them.  This is their standard procedure, evidently, because she was ready to do it on the spot for the small sum of $800.  (hmm…) The husband felt I should have it done, for the peace of mind knowing the nodules were or were not malignant.  They had not changed much in size since the last ultrasound but were sufficiently large to be of concern.  So that was done.  Three fine gauge needles in each of the two nodules, ultrasound guided, sucking cells out of different areas.  I’ve pretty much had it with needles.  I do not yet know the cytology results.

I’m sorting through a confusing amount of bills, and insurance statements from all of this.  I don’t think I ever want to have another physical exam.

January 2015

Somewhere around the end of December I got a cold.  It was in my chest immediately and I could hear a lot of rales and wheezing.  After a week (at home, in bed) I wasn’t better so I went to  Dr. Mischner (Kassabov didn’t have openings).  I was diagnosed with asthmatic bronchitis and given prednisone and a Z-pack.  It helped but the thing still lasted two more weeks.  Because I was coughing a lot I had to postpone my next intraocular injection a week.  Then I had to postpone it again because my cousin’s husband was in the hospital on a ventilator and I was helping the family with childcare.

Finally last week I had my eye checkup and things were good.  I had the injection and since I’ve gone twelve weeks without a recurrence it may be the last one I have to have.  That is very good news.

I have been experimenting with essential oils.  They do smell good.  I think I sleep better when several of them are diffused in the room.  It’s hard to tell, but I am intrigued by all their reported uses.

It is May 15, 2015.

I am sitting in the recliner at 11 pm, not able to sleep and not able to have more pain medicine for at least another hour.  The calcific tendinities is back  and I wanted to see when I had the first episode of it.  It was September last year so has been almost eight months.  It is almost exactly the same this time except I have not gone to urgent care because I already know what it is.  I don’t know why it starts, except that the painful stage supposedly is when the calcium deposit is being absorbed.  For me, the pain is incapacitating.  Any movement of my body affects my shoulder, making sharp, knife like jabs that superimpose themselves over the raging ache that’s there all the time.  I try to hold as still as I can, hoping that it will calm down.  It is a bit better after each dose of ibuprofen but as soon as the third hour rolls around I begin to feel it too much to ignore it.  All the guarding that I’m doing with accessory muscles makes my whole arm, neck and head hurt as well.  Pain is just plain overwhelming sometimes, but there is nothing I can do about it but wait and hope for a better minute, hour, day, when it’s gone.

A couple weeks ago I had another appointment with the retina specialist.  It had been twelve weeks since the last shot and I was hoping that I would not need another one, ever.  This was not to be.  The scan showed some swelling returning so I was given another dose and scheduled for return in 10 weeks – 12 weeks being too long without treatment.  I just can’t imagine doing this every 10 weeks for the rest of my life.  Then again, I may not live long enough for it to be such a problem.  And my blood pressure was high again.  I have a feeling that the blood pressure change has been going on for longer than I knew, and that it may have caused the changes in my blood vessels leading to the inflammation and bleed.  I don’t know what to do with my body.  How to help it?  Too many visible changes are assaulting me.

It’s a little scary to be going to a foreign country knowing that unexpected health problems are popping up every few months.  My trip is in June, only about three weeks away now.  I’ve got to be strong for that – it is no walk in the park.

October 13, 2015

Wow, I have never had a summer like this.  I haven’t had much time to write about my health or even think about my path through the aging minefield.

Shortly after my last post in May, on a Saturday night,  I got a call from my brother in Wisconsin, that my dad had just had what looked like a heart attack and had been rushed to the hospital by ambulance, unresponsive.  He died.  I traveled there the next day.  The next two weeks our family gathered, planned a funeral and mourned.  And then I went back home for one day before setting out on the two week trip to Cambodia.  Toward the end of that trip I learned that my client, Jack, had died unexpectedly.  I was home one day for his funeral.  While at home that short time I learned from my daughter in Seattle that her husband was leaving her.  She was ill and grief stricken.  I went to Seattle for two weeks.  Mourning again, since his departure was almost like a death.  I came home with a plan to return to help her as she underwent a new treatment in August.

It had been more than the scheduled ten weeks since my last eye exam and I was worried that all the stress and travel might have made things worse.  It hadn’t.  The exam showed  no more inflammation.  I had the injection and went back to a 12 week schedule.

Esther in Seattle needed help sooner than anticipated, so her treatment was moved up.  My husband rushed out to be with her and I came a few days later.  He stayed two weeks.  I stayed on for a month.  I flew out on July 24 and didn’t return home until August 26.  Esther was feeling better and felt she should try to get by on her own.

A week later the husband and I went to Jacksonville.  Dr. Julia was being asked to move out of her house by the first of October and had no idea where she could live and no time to look for a place.  We thought we might be able to help.  She later found out she did not need to move (after packing multiple boxes, which we left packed) but she did end up buying a truck.  After a long weekend with her we came home – and then I turned around and went back up, bringing the truck that she was trading for her new one.  I stayed the rest of the week.  It was September 11th.  I had two weeks at home before the next trip.

That week was spent trying to accomplish a month’s work of organizing our bathroom remodel.  We wanted this to be done before mom came down for the winter and time was running out.  On September 25 I went back up to Jacksonville for Julie’s birthday and an overnight stay.  The next day I drove to Fort Walton Beach to meet mom and nephew Evan at the airport.  We spent a week with family in a condo on the beach at Destin.  It was the Feast of Tabernacles.  Mom and I drove back to Jacksonville, spent the night, and then to Bradenton.  We spent a few days at a cottage of a friend on Longboat Key (our bathroom – not finished yet).  I drove Mom to the airport last Saturday.

Today I went to the retina specialist again for another exam and injection.  There was no worsening of my condition, for which I am overwhelmingly grateful to God.  I have consciously, in mind, heart and prayer, put my physical condition in his hands for him to take care of.  My new motto: Until he is done with me here on earth, I am invincible.  I guess he’s not done yet.

Talk (write) to me.

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