April 5, 2026 Sunday

Greetings!

What a week!  I shall take you on the roller coaster ride it was.  If you are tired of bad news just take a pass or come back and read it later.  I wished I could do that myself with some of it.  There was good and bad, of course...as there always is.  The journey started on Monday with some good news.  A young man came to work on the water softener and fixed it!  Allie hid down in the bottom cubby of the cat tree the whole time.

The repairman also came for the washing machine up on the top floor.  He said it needed a part and they are coming to try to fix it on Tuesday this coming week.  Hopefully that person will be as successful.

I switched the chairs for Allie.  Moved the little hardback chairs to the new table...

...and pushed the two rollie chairs into the studio.  

Allie is happy!  I keep one pulled out so she can get up and down on to the table...but she still seems to occasionally like the thrill of leaping across from the top of the back of my chair for some reason.  She gets on that little ledge back there and takes a long time to get up her courage.  I tell her she can come back down and I won't think any less of her...but she eventually takes that leap!  Even when there was stuff on the table in her way?  (I moved that laptop.)  This was her fourth flying leap, I think.  I never knew she had this daredevil side!  Learning about steps and cat trees has gone to her head! 

She just wanted to take the thrilling route to get back on the old towel on the table--lol!

Towel and such are supplies for Leah to cut my hair later tonight.  :)

Tuesday.  The boys were down here and I told Ian that someone had asked me to get videos of them playing their new Christmas instruments.  I took videos.  Uploaded them to YouTube, as usual, but went to put them in the blog and there is no way I am allowed to do it.  So sad about that.  This post needed some more happy stuff.  :(  Basically Google demanded many years ago that we have a YouTube account with a Google address.  I remember they just made me one and said I had to use it.  But I never could combine my old yahoo account with the new one.  Tried and tried but couldn't figure it out.  (Dagan and Leah know nothing about YouTube.)  Somehow now I can only upload onto the old account no matter which account it looks like I have chosen, but it doesn't recognize the old account.  In other words.  I have no useable account anymore somehow.  *sigh*  Way over my head.  If I can ever figure it out, I will let you know and show you the videos.  I may need to start a brand new YT account!  Awk!

Wednesday.  

Okay.  Strap yourself in.  Leah and I went to the eye appointment with Dr. Anderson.  This ordeal started at 1:15pm and we were hustling out the door at closing time at 5pm.  A very long day.  I was wiped out and in pain.  So much happened.  Not good news.

After 2 1/2 weeks of dilation and steroid drops they could finally see well enough into the back of my eye to probably get pictures.  So pictures I did have.  Both the machines I failed on that previous visit worked well enough, I guess.  I still do have inflammation within my eyeball, though, so it was a long process.  Leah would wait in my room while I went for picture sessions in different rooms.  I had another ultrasound session done in my room.  There was a lot of testing...bright lights, look this way and that way...eye numbing so they could press on my eye...different bright lights...and many consultations between Dr. Anderson and the nurse or tech whoever he was (same two guys I had before that time) over the pictures and various results.  Then sent off for special pictures done with an IV dye.  I got a student nurse for the first hand fail and then the regular nurse had to try twice to get it--once in my arm and then my hand.  No, I refused to let her try my bad hand, thank you very much. (Does this remind you of anyone?  LOL!)

There were lots of questions about my autoimmune history (specifically inflammations).  My eye history (cataracts and macular puckers.)  Recounting how this has all gone down since Christmas.  None of this has gone normally.  (We know.)  Every doctor (have had four now) has mentioned how unusual this has all been...and how resistant the inflammation has been to treatment.  Discussed cancer and Keytruda and fibro and arthritis...lots of subjects over the 3 hours and 45 minutes.

Here and there we were told what they could now see inside my eye.  Are you ready?

I wasn't.

Besides the unending inflammation, I have a detached retina that also has some kind of fold in it that would have to be flattened out before it could be reattached.  (But then I also have macular puckers on the back of my eye which would have to be flattened out before it could be reattached--Leah had already googled while she sat alone in the room waiting for me so many times.)  PLUS...I have a tear in the retina in my good eye.  He said laser surgery would go around the tear to try to prevent it from getting worse.  (He didn't say that they also need to seal the tear so there isn't leakage that could cause that retina to detach--I googled--been busy since I got the online scan results.)  He had mentioned he was concerned about leakage, but never explained why. They've been testing my eye pressures all along every time I have been in.  This time two nurses had a heck of a time getting it on my bad eye (or should I now say worse eye).  Had to try several times and then go get a larger contraption to press on my whole eye.  Pressure of 2!  No pressure in that eye to speak of.  (Googled that--supposed to be 10-20--too low and can cause permanent damage--didn't bother to look up causes because by that time I was just overwhelmed and guessed it was due to leakage or just crappy eye--take your guess, toss the dice--lol!) 

It was obvious Dr. Anderson was a bit overwhelmed, too.  He didn't know exactly what to say and nothing could be done with my eye still being inflamed.  Was very interested in my referral to the rheumatologist on the 14th.  Had seen my hand and even took pictures of my hands to be able to compare if there was improvement or not in a week. 

Can't schedule surgery until the eye has gotten even better apparently.  (Leah and I had both separately decided that we want a consultation and second opinion from Dr. Ridgeley before I agree to any surgery.)  I was sent home with the steroid drops, another kind of dilation drops, and oral steroids (which give me diarrhea--lol!)  Going back to se Anderson this coming Wednesday.  No real idea what the plan is.  Sounds like Dr. Ridgeley may only be there part time or be on vacation or something when we saw him last.  (I don't hear very well.)

Was feeling awful and mentally numb (headache, eyes sore from everything done to them, body pain from all the sitting in hard chairs, weak, exhausted)...couldn't even tackle the stairs for a good while.  Leah had to go back to work even that late.  I sat upstairs with the boys and Dagan for a good while before I could work up to going down the stairs.  The day has quite annoyed my left hip--lol!  Dagan went down with me and made sure I was settled in my chair and made something for me to eat.  What a day!

What kept going through my mind is I had kept telling Leah that I was having this feeling the past few weeks that my bad eye was just giving up.  When Anderson came at me for the last test he did with this super bright light that he was apologizing for before he started...well, I just sat there.  Leah was in the room and watched it all.  I did look right, left, and up and down over and over.  Then he went to my good eye!!!  OMG!!  It was sooo bright it hurt and I think I said OMG!!  Turned my head away and said, is that the same light?!  That can't be the same light!!  Was such a shock.  It was right then I knew that there isn't likely a good chance of saving that other eye, to be honest.  It has given up.  I think I said...Well, that one obviously isn't working anymore.

I slept 9 hours that night.

Thursday.  A day of adjustment.  Silence.  It had snowed a bit during the night.

I did have to deal with a mix-up with the three prescription orders--pharmacy said they didn't get the order and the clinic said they sent the order.  I let them fight it out after three phone calls.  Dagan could finally pick up two of the prescriptions after Ian was done at Haley's Hope (dyslexia) in the evening.  Had to wait another day for the pharmacy to order the new dilation drops but he said to keep using the old ones until I got the new ones.  I slept almost 10 hours.  Took two collapse days to get my bearings.

Friday.  Managed to do laundry, but got nothing hung or folded and put away.  Scan results came in online and doctor's summary of my visit.  Did a lot of googling medical terms with my eye patch on.  Decided it was time to invest in some bigger domed eye patches--LOL!  Snowed 7 inches.  Wind wasn't going my window wells way, but I could see there was quite a bit. 

I couldn't catch the flakes well to show you them drifting down most of the day, but Allie loved watching them float past. 

I had been gone a long time. Allie seemed to know something was off with me and spent more time on the chair with me than she usually does.  Definitely still a day in a lounger with my flower-power slippers.

In the evening Dagan and Leah surprised me!  Brought down my new laptop when they kind of made it sound like they hadn't decided on one for sure...just were texting me questions while they were shopping.  But it was also because they wanted me to try it out before I decided if I liked it enough to keep it.  Leah took it upstairs to work on switching everything over for me.  She has done this for me so many times she knows all my Gramma things I need tweaked--like not to have a fast cursor-mouse-thingie and I have to use clicking on the mouse box or I am constantly double/triple clicking everything because I learned how to type on an old manual Underwood and still pound too hard on the keys--lol! 

Saturday.  Two more inches of snow.  But I never knew how deep it was out there from my living room window or...

...even from the north window in the studio.  But you can see closer to the 9 inches we got in two days from there.  It was heavy, wet snow so it sinks quite a bit.  Took the better part of Saturday for them to get half the snow blown and shoveled from the driveway and steps.  Battery died on the blower.  They will finish today.

They thought it was funny how little snow I had in my window well.  Glad they didn't have to shovel it out for me.  That's when I realized how much snow we had actually gotten--lol! 

They brought down my new Dell laptop.  I am getting used to it.  It is a bit larger.  Bigger keyboard and print for me to read.  I can do voice to text!!  (That lady is a DIY YouTube lady, BTW.)  

Got all my laundry put away over the course of the day.  Found the supplies for Leah to cut my hair, as I mentioned...and that Allie found as soon as she discovered she could get up on to the table via the little chair--lol!

What?  I thought you put this here for me.

Sunday.  How am I feeling about all of this?  Well, those of you who have been around for a while know I go through worst case scenarios to absorb and face and then go up I from there.  I had already pretty much had gone through worst case with the bad eye the past 2 1/2 weeks between appointments.  Have already dealt with having one non-functional eye for 3 1/2 months.  It is now looking pretty normal and feels pretty normal.  Not all red, swollen, watering down my face, and painful to the lightest touch anymore.  Just can't see out of it.  But I can wear an eye patch so that it doesn't interfere with my good eye for reading and typing and writing.  That's a huge improvement right there.

My hand.  Well, the swelling and sharp constant pain has been gradually going down for several weeks.  The better it has been getting the easier it is to function...to write and type and deal with laundry and all the rest.  Now, because of the hand inflammation, after I saw Dr. Ridgeley I went on a really strict minimal diet where you only add one new food once every 5-7 days to see how your body reacts.  Nothing to lose, right?  Basically consuming beef, eggs, butter, water, salt, and black coffee.  Leah has done this carnivore detoxing before and I have come close but not for any length of time because I just couldn't give up my dairy--lol!  Desperate times call for desperate measures, right.  I wanted to try it this time and have been doing this for three weeks.  Added brussels sprouts on week two and hollandaise sauce (which is really only eggs and butter) week three.  No dairy.  No processed foods.  My hand has been slowly improving.  No bad reactions to those additions--gut or inflammation.  Had planned to add something new this last week.  But I forgot and drank some Zevia (carbonated drink in a can) one day and had an immediate gut reaction--lol!  So Zevia is off my list of what I can consume.  Is a processed food with chemicals in it--so I guess I deserved it.  ;)

Anyways, now I can't tell anything because of the oral steroids I gut-react to...and have...but not to as bad a degree as I have in the past.  So far.   Knock on wood.  My hand hasn't gotten any worse and is continuing to get a little better and better day by day.  But is it the super limited diet, no dairy and no processed foods or is it the steroid tablets?  Or a combination?  Who knows.  I guess I will know eventually.

Anyways, all of that to say that I could live with one good eye and a mostly or completely functional hand.  It would be better than what I have lived through so far since Christmas.  I am rejoicing in the improvements.  Another crazy silver lining was the hand took the focus off my eye--ROFL! ;)

But losing the other eye???  Now that would be really, really hard. So very difficult to do worst case scenario with that one.  But I have a little.  Touched upon it and packed it away to the back of my mind.  To go from there?  To find the positives?  My focus is saving the "good" eye.  When Leah and I go back I informed Dagan and Leah last night that I want that laser surgery on my good eye first.  Saving my good eye should be the top priority, as far as I'm concerned.  If I am basically blind for a while after surgery while I heal...so be it.  We'd get through it somehow.  They agreed.  

Anderson is guessing as to when I got the tear in the good eye.  They haven't been able to see inside my bad eye (and nobody was paying close attention to the good eye).  It could have torn up to six months ago, like he said--or more recently.  They haven't seen it so they don't know if it has been growing.  But if it is torn it could detach.  I do not want to be blind in both eyes.  Good eye first.  That's my strong feeling and what I plan to tell Anderson on Wednesday.  Maybe they will have logical reasons to deal with the bad eye first, but they will need to convince me.  And we still want to know Dr. Ridgeley's opinion before any decisions are made.  Leah and I trusted him more, you know?  Gut feeling with him, too--lol!  So that has been what I have been absorbing and adjusting to.  Not good news.  It wasn't just the crazy inflammation.

Funny!  Look at the card I drew for today!    

I see my dad who could hardly walk anymore at 89 but was determined not to die in a wheelchair (and already knew my mother was not a caregiver type).  He insisted he wanted to have the hip replacement he needed in order to hopefully be able to walk again.  All the doctors deemed him too old for that type of surgery.  He hunted till he found a surgeon who would do it.  Had to sign his life away to get the hip replacement at 90 but he was walking again.  Slowly, but he was walking without even using a walker (though maybe he should have been--lol!).  I miss that stubborn old Swede.  He was a perfectionist with a great sense of humor with a bit of the child in him, yet was always waiting for the other shoe to drop. He was the one who insisted on watching the Vietnam War over dinner every night because he wanted to know what was happening in the world.  My mother would mentally wear earplugs and not look or let him talk about it.  He'd mutter to himself...but I heard him.

I see my mother who always tried to look at the positive side.  Even if her way was to never take a close look at any negative possibilities or discuss anything whatsoever that she deemed as negative or bad or just didn't want to hear about.  She lived as happy a surface life as a person could live.  A collector of things she wanted to learn to do--did learn--but then lost lost interest.  Hated to clean or deal with children.  She was the absolute center of her life.  Fell apart if she couldn't have her way, escape all things in life that brought her down or made her face facts, and live the happy, unfettered life she deserved...as narcissists will do.  I learned not to bother her with real life as a young child taking care of her other two children (starting at about five when we moved to Fridley, Minnesota and they were both in diapers).

I would like to say I have a combination of both their better sides, but I know I have some of their bad sides, too.  I know I was a better parent than my mother, though--lol!  But I see parts of those two people in me, yes.  For sure!

What about you and your parents?  

And what would you want to do in your situation if you had both these eyes of mine?  At least from what I do know so far?

Confession.  There was so much to cover (and with a new computer besides) that I actually started this post on Saturday because I knew it would take me such a long time.  Plus only three hours of sleep (imagine me having trouble sleeping over this--lol!) and I am done earlier than I expected.

Oh and the voice to text has no spell check and is as weird and humorous as the voice to text on my phone--lol!  But it is better than nothing.  I used it half the time and am glad to have it.  Two new (better?) domed eye patches are supposed to arrive today.  The driveway is half cleared and hopefully the streets are, too. 

Well, life is like a box of chocolates, eh?  I can hardly wait for your comments.  You guys keep me going.  Honestly.  I appreciate you so much.  Even my lurkers--lol!  I can feel you there.  I do hope I have more actual knowledge next time and maybe some better news.  Regardless...I shall be back next Sunday.  Happy Easter to all those who celebrate this day.  

*love and hugs from Fargo*