My new normal

Well, times change, nothing stays the same.  Here’s hoping I can do this without tears.

My Mom’s health has taken a sudden down turn.  We don’t know what’s wrong and we’ve been trying for nearly a week to get in touch with her Doctor for some advice or direction, or something.  She wakes up screaming and shaking and pounding the bed sheets.  She either can’t, or won’t, get out of bed, so we bought some adult diapers for her and some waterproof mattress pads.  It makes it so much easier to change her.  She says her mind gets dark and she doesn’t know why and she can’t think.  Other times, she sees people and animals that aren’t there.  When we can get her to eat and drink, she gets calmer.  We make sure she gets all of her meds and her insulin shots on time, and that helps, too.  It’s been a very frantic and stressful and difficult 7 days.  We’ve even tried to get her to go to the hospital but she is so afraid they are going to think she’s crazy and put her away that it’s a no go.  We’re going to keep trying though.

Finally, late this afternoon, my sister heard from the Visiting Nurses and they will be at the house tomorrow to evaluate her, help give her a bath, change the sheets on the bed, etc.  Stuff that, unfortunately, right now, neither Cindy or I are capable of doing.  It is such a load off of both our minds right now.  (And, yes, we’ve been saying Thank You, God prayers all afternoon.)  Hopefully we can get some blood work done and start trying to figure this out.  I’m hoping it is a relatively simple fix.  Maybe change some of her meds, maybe change her diet, maybe add something…  She thinks she’s had a stroke, but neither Cindy or I really agree with that.

Bottom line is this, I want my Mother back, even if its only for a short while…

 

My New Normal

Lately, I’ve been dealing with what I’m calling my New Normal.  And, as with so many other things, there are several phases to go through to get to the acceptance level of my New Normal.  And I’m not really sure I’m there yet.

My New Normal life includes things like COPD, asthma, arthritis in both knees and moving up to my shoulders, a sciatic hip, and now, I have issues with my wrist from using the computer mouse wrong.  (Insert heavy sigh here.)  I’ve been dealing with the asthma for about 25 years, or so I thought.  Seems I was diagnosed with it when I was 12, but my Mom and my Doctor decided it wasn’t something I needed to know cause it was “low grade” asthma and it wasn’t really giving me much trouble.  I now understand why my Doctor would always tell me, “You know that stuff you had before?  Well, you’ve got it again.”  when I’d go in because I wasn’t feeling very well and was a little short of breath.  Was not pleased to learn this. It means I have had asthma for 48 years, give or take.  Oh, yea.

My arthritis is the result of “if I’d known I was going to live this long I’d have taken better care of myself…”  Too many twisted, popped, tweaked knee injuries over the course of my life.  I always was an accident looking for a place to happen.  But I can deal with the arthritis, as long as the barometer isn’t falling, or already in the cellar, then I have issues.  The sciatica, though, is another story completely.  I have yet to figure out what sets that off.  I can go for weeks before it flares up.  Then I can hardly walk.  Sometimes even sitting is difficult.  The same goes for my wrist.  Fortunately, when it starts up, if I just take a few minutes and let my arm hang down for a bit, everything goes away and I can go back to work.  Oh well…

The one I’m having the hardest time with is the COPD.  I’m having a real hard time dealing with the prospect of being on oxygen 24/7 for The Rest Of My Life.  I get so angry and frustrated with the stupid tanks.  I keep trying to stay off it, but I always have to give in and put the stupid nose hose on and breath the oxygen.  Oh, and I get a lot of “How long did you smoke?” remarks.  I have NEVER smoked.  The only thing I can think of is that when I was born, my lungs and sinuses were filled with mucus and not functioning very well, the Doctors put me in an oxygen tent for a week.  PURE oxygen.  For a week.  So many things get explained by that.  None of this stuff is due to anything I did.  It isn’t my fault, but I get to deal with it.  I know that having hernia surgery with the anesthesia that they used, so I wouldn’t have any problems, added to the crap with my lungs.  It was probably the straw that broke the camel’s back.  I suppose, eventually, I would have ended up on oxygen, but before I hit 60 kind of sucked.

I still try to get away with not using the oxygen all the time, like I should, and then rush to put it on when I get winded.  So, like I said, not quite at the accepted level, still at the frustration level.  Still pretty unhappy and feeling that it’s just not fair.  But there’s a small, little voice that creeps in from time to time to remind me that the option is far less acceptable.

Well, when did this happen?

Yesterday, My Mom, Sister and a family friend and I went garage saling.  Before we got started, we went to McDonald’s for a quick breakfast.  When Cindy was ordering, I realized that she ordered a Senior Coffee for me.  When did I become “a Senior”?  And do I really want to be one?  It’s not that I mind taking advantage of all the benefits that come with being “a Senior”, I’m just not sure I’m ready to admit that I am one.  I certainly don’t feel like it.  Except on days like today, when the barometer is in the basement and ankles hurt and knees hurt and shoulders hurt and back hurts.  For a change, the only thing that hasn’t hurt today is my sciatic hip.

Okay, so I’m now on oxygen 24/7, darn asthma and COPD, (and no, I have never smoked, just bad lungs, badly cared for when I was growing up.), I have trouble walking long distances, thanks arthritis, my right shoulder is now starting to give me grief, I find the occasional silver strand of hair from time to time and sleep and I have not agreed on sleep times for quite awhile.  There, that is my list of complaints.  There are a few more things, but they’re little and only bother me on  rare occasions.

So, here’s the thing, I still FEEL like I’m in my forties or fifties.  I know, age is a matter of mind, if you don’t mind, it doesn’t matter.  And most of the time, I could care less how old I am.  Sometimes, though, I feel old.  Today is one of those days.  Low barometer, wind, and heat – 76 degrees today, March 6th.  76 degrees.  In March.  It’s a little scary.  I don’t do well in heat.  I’ve had 2 “episodes” of heat sickness and the last put me in the hospital.  So there’s another thing that doesn’t work so well any more – my internal thermostat is shot to pieces.

Still, I guess I’m really not too upset about the Senior thing.  I just don’t know exactly when it happened.  And why…

SIGH…

I find myself at the begins of S.A.D.  (Seasonal Affective Disorder)  I was hoping, because everything has been going so well, that I could delay it’s onset, but not so.  In truth, it’s a little early this year, not yet fall.  But that’s as may be.  So, let’s play catch-up.

My Cardiac CT, that my personal Doctor insisted on, went really well.  In fact, the cardiologist used words like wonderful and superb and terrific.  He said all sorts of wonderful things about my heart and the surrounding blood veins, arteries and vessels.  He said there was no sign at all of a heart attack, no signs of any blockages and very minimal plaque.  He said he hadn’t seen a heart in as good a shape as mine, for someone my age, in a long time.  Woo Hoo!  So I celebrated by getting my hair done, a perm and a cut.  (Looks pretty good.)

Now, while all this was going on, we were dealing with smoke from the fires all the way over in California and Oregon.  Also, in the part of Southeastern Colorado that I live in, we were having dust storms.  We had one so bad that it closed the hiways between our town and the border both to the south and to the east.  When you have asthma and COPD, both of those events are not good.  So, after a few days of extra oxygen and allergy eyes, I went to my ophthalmologist for my annual eye exam.  She was new, my older eye doctor having retired at the first of the year.  But I really liked her.  Even if I wasn’t thrilled with her diagnoses.    My eyes, never very good anyway, have gotten to the point that my glasses can only partially correct my vision.  Can’t get it to 20/20 anymore.  I told her so long as it can be corrected so that I can continue to work, I will deal with it.  She smiled and said that not being able to see well enough to do things was a long way off still.  Okay, so I can deal with.  Heck, for most of, if not all of, my life, I’ve been told that I would probably be blind by 60, so no big thing.  (By the way in 4 months I will be 60.)

So, while things are going well, physically, my mental issues are returning.  I’m glad its only seasonal.  Though I’d prefer not to have to deal with them at all.  Even though I still have small bouts through out the year, too many grey rainy days, etc., my worst days are when winter hits.  Last year wasn’t too bad, but with predictions of a cold, wet, El Nino winter, I’m not looking forward to winter…  oh well.  Sigh

Here I go again…

Well, I have had an interesting couple of weeks.  I have another week to go, maybe a week and a half, before I know what’s going on.  Here’s the story so far…

Thursday, July 23, I woke up feeling not so good.  I was having a very hard time catching my breath and my chest felt like someone threw a rock at me and my left shoulder hurt something fierce.  I decided it was time to take myself to the walk in clinic.  Fortunately, my own Doctor was on call at the clinic.  He asked me what was up, so I told him.  He listened to my heart and lungs for about that long then said he was sending me to the ER.  He said that they could do the same tests there in the office, but it would be a few days before he got the results.  The ER was faster.  So, I took my self to the ER (fortunately the hospital is next to the clinic) and the nurses there were waiting for me.  My doctor thought I was having a heart attack.  I called my Mom and Sister and Cindy came right over.  By the time she got there, they had me hooked up to two different machines and were in the process of drawing blood.  (I swear they took half my blood.)  She had a few errands to run and both the nurses and myself told her to go ahead, it would be a while before they knew anything.  After the blood draw, I got to go to X-Ray and get pictures of my chest and shoulders and all that fun stuff.  Then they put me back in my room in the ER.  Fortunately, they had the Disney Channel on, so I watched cartoons for about half an hour.

Eventually, the ER Doctor came in.  He said all my tests were clear.  No enzymes to show anything happened with my heart, blood pressure was normal, no infections or diseases were found in my blood, nothing out of the ordinary.  Okay, so what happened?   The ER Doctor asked where the most pain was and started to push on the area.  It hurt, so I said oww!  He smiled and said it wasn’t a heart attack, it was just separation of the cartilage between the breastbone and the ribs.  It would take 6 to 8 weeks to heal.  No heavy lifting and try not to cough cause it could start everything all over again.  Cindy got back just as he was releasing me, with the instructions to see my Dr. within a week.

So, okay.  Cartilage separation.  I can live with that.  The next Thursday I went back to my Doctor.  He asked when I was released.  I told him Thursday.   He said no, not when I was admitted, when was I released.  I said Thursday.  I told him everything the ER Doctor told me and I have to say, I have never seen my Doctor get so mad so fast, ever.  So he sent me to a cardiologist who looked everything over and said that while he didn’t see any signs of a heart attack, and that my heart looked good and sounded fine and that my lungs, all things considered, were good, he wanted to take a better look.  So, Next Thursday, Aug. 13, I, and my driver Cindy, leave here at 5 in the morning and go to Memorial Hospital in Colorado Springs for a cardiac CT.  Once again, I get my blood filled with all sorts of chemicals so the Techs and the Doctor can watch my circulatory system work.  Oh joy.

My sister is amazing.

I spent the afternoon with my Mom today.  That, in and of itself is nothing exciting.  I spend part of almost every Sunday with my Mom and my sister.  But today was a little different.  Yesterday, Mom had to go to the Emergency Room at our local hospital.  She had a bloody nose that wouldn’t stop.  The ER Doctor got it stopped, but was hesitant, I guess, to give a cause other than living here on the high plains – hot and dry and nose bleeds happen.  I think it scared her a bit.  Then today at lunch, it happened again.  Cindy got it stopped with a trick from one of our great aunts (and she really is a Great Aunt!)  They made a plug out of paper towel and honey and put it up the nostril that was bleeding.  It worked.  The bleeding stopped, but Mom was so afraid that it would start again that she didn’t want to be in a room by herself.  So, while Cindy mowed the front and back yards, I stayed with Mom instead of heading back home, like I usually do.

Now Mom usually goes to her room, gets into bed and naps a bit after lunch.  She didn’t want to do that today.  (Mom has this chair that she used to sit in, but hasn’t for awhile.  It’s such a cool chair.  It raises up to an almost upright position and drops back to an almost vertical position.)  She wanted to sit in her chair while we waited for Cindy to finish mowing.  I told her we could go back to her bedroom, where she would be more comfortable, but she was afraid of laying down.  So, I helped her get into the chair.  It was kind of scary.  She got her foot stuck under the chair and almost fell before we got her in the chair.  Got her situated and found a channel on TV she wanted to watch and settled in the chair across from her.

Soon, she was asleep.  So I got up to check on the laundry and get something to drink.  She woke up and was frantic when she realized no one was in the room with her.  I hurried back to my chair, assuring her that I wasn’t going to leave until Cindy got back in.  So, for the next hour or so, I stayed in my chair, even when she was asleep.

It gave me time to think, and watch her.  She’s 82 years old, but sometimes, I think she acts like a 5 year old.  Cindy has been telling me that her mind is starting to wander on occasion, but until today, I didn’t really believe it, exactly.  I understood what she meant after today.  Instead of my Mom with the razor sharp mind, I was babysitting a scared 5 year old.  It made me sad.

When Cindy got in, and after she took a shower (temps are in the 104 range today), we woke Mom up, got her back into her wheelchair (much easier this time), and she took herself to bed.  A small part of me wanted to be upset that she trusted Cindy enough to go to bed, but not me, but then again, Cindy lives with her, I don’t.

I thought about this all the way home.  Its still there in my mind.  I accept that Mom was scared by the non-stop bloody nose and that, if her mind is a little “diffused”, she would think that I wouldn’t stay with her the same way she thinks of Cindy staying with her.  I don’t know how well I would be dealing with stuff like this as much as Cindy must.  I love my Mom dearly.  But my sister is amazing.  I am in awe of how easily she deals with Mom.  Some day I want to grow up to be just like her.  Well, sort of.

A New World Order

These last two weeks have left me shaken a bit.  I got sick.  REALLY sick.  I was so sick that when my Doctor saw me, the first thing he said was, “Don’t really want another hospital patient, but I will just have to deal with it.”  I asked if I had a choice and he said, “sure, you can go to the hospital, or you can go home and wait to die.”  That’s when I started thinking that maybe I was sicker than I thought.  And I was.

I ran very high fever for several days, had a bacterial infection and fluid build up in my lungs (my lungs were functional at less than 85%), a sinus infection, two ear infections and an UTI.

For the first two or two and a half days, I really didn’t care what was going on.  Once they got the temp down, and reality started to set back in, I realized something that every one else around me had already picked up on.  I have severe asthma complicated by COPD.  Any little infection that I get can cause me a great deal of harm.

That’s a hard thing for me to wrap my brain around.  I have to worry about even the common cold now.  Never use to.  And I’m on oxygen, 24/7 for the rest of my life.  That’s the hardest one to deal with.  I’m not even 60 yet, and I’m on oxygen.  For the rest of my life.  Does not make me happy.

However, after these last two weeks, I will learn to deal with it.

And I am still waiting to be released back to work.  Maybe tomorrow…

Woo Hoo!

Well, its all over but the celebrating.  I will be getting my back pay fairly soon, without, I might add, proof of mental competence.  Seems the last person I talked to at the Social Security office “got to thinking”.  She went back and re-read the deposition 3 times and couldn’t find any thing that said I needed a personal representative to handle my finances.  Woo Hoo!  She ended the conversation by saying she was sending out the form to release my back pay that day.  Don’t really know when I’ll be getting it, but I KNOW how much I will be getting.  I have my budget all worked out.  Woo Hoo!

Had a Doctor’s appointment today.  It went pretty good, all things considered.  Blood pressure is almost normal, blood sugar is back down below 200 and I’ve lost another 4 pounds.  Had discussions about the oxygen.  Seems I’ll just have to learn to live with it.  My lungs seem to have been damaged a bit more than the Doctors thought from the anesthesia.  Oh well.  I can handle it.  Don’t much like it, but I can handle it.

Today, even my OA (osteo arthritis) doesn’t bother me very much.  Neither does my sciatica.  All in all a good day.

Oh, I also got a “raise” at work.  (My hours were increased.)

Woo Hoo!

Now, if only I knew….

Okay so, I know, finally, that I have been approved for Disability.  I know I’ll get my back pay next month and that I’ll be getting my monthly payments the third Wednesday of the month, now if I just knew how much I was getting, I’d be in hog heaven.  But that may be a few weeks away…

See, here’s the thing, if you ever talk to a judge, make certain you make statements that are crystal clear.  And here’s why…

The Judge asked me, at one point if I had a valid driver’s license.  I said yes.  He asked if I had a car.  I said yes.  He asked if I was still driving.  I said yes.  He asked if I drove myself up to the hearing and I said no.  He asked why and I said…”My mother didn’t want me to drive up by myself.”  Turns out I should have added, “Because my windshield is cracked and there are a few other possible mechanical problems and she didn’t want me to have any problems.”

I wasn’t clear, and now I’m having to get a letter from my Doctor that says I’m mental sound and able to handle my own financial affairs.  Of course, once my sister heard, she volunteered to be my representative, for 55% of my back pay.  I don’t think so.  She did thank me for giving her the laugh of the year.  It is kind of funny and frustrating all at the same time.

At least I do know that I’m getting my money, even if I don’t know how much yet, so, even though I misspoke at the hearing, I’m relieved and happy.

And now we wait. And wait. And wait…

So on Tuesday, at 10:30 am, I had my Disability hearing.  Had to drive to Pueblo, which is 125 miles west of here, but first we had to drive to Colorado Springs, another 50 miles or so, because my sister had a dental appointment.  Then back to Pueblo for my hearing.  I was on time, my lawyer was a little late.  We had enough time for our conference before being called into the Judge’s hearing room.  The hearing started at 10:24 am and ended 23 minutes later at 10:57 am.  There were 5 people, the Judge, the clerk, the Representative from Social Security, my lawyer and myself.  We made some concessions, they made some concessions and the hearing ended.  My lawyer says he thinks there is a 95% chance that I will be getting Disability.  He thought the judge liked me, mainly because I looked at him when I answered his questions and I answered all of his question “intelligently”.  Whatever that means.  So, now, I wait for the ruling.  It could take 4 to 6 weeks before I get the letter from the Judge saying Disability has been granted.  Then I have to wait another 2 to 4 weeks for Social Security to set up a phone call appointment to verify every thing and then another 1 to 2 weeks before I get my back pay, minus the lawyers fee.  So, I’m still waiting.

In the meantime, however…  On Valentine’s Day, I spent the morning in the ER because I had severe pain in my right hip.  Pain so bad I couldn’t move without crying.  Turns out I now have Sciatica.  The medicine they gave me for that makes me light-headed and nauseous and a bit disorientated.  I have two more days of the meds to go, and then we’ll see.  Still need to call my Doctor for an appointment.  So, yea, I gotta do that.

Plus I qualified for free weatherization of the house.  They will be here next Friday for 2 hours.  Oh joy.  It is a good thing, really, I just have a lot to do before then and, as usual, not a lot of time to do everything in.  Especially when I’m getting dizzy and disorientated and stuff.

All in all, though, I feel pretty good.  I agreed with the lawyer, I think I will get my disability, and the lawyer and Mom both think I’ll get closer to the higher end of the range, which would be wonderful.  I do feel better, even if I am groggy and light headed and stuff, and getting this house weatherized can’t but help me save money, so, all in all, I’m good.  For a change.