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Sunday, February 23, 2014

Just a Stepping-stone, right?

Saturday, February 22, 2014 @ 3:22 pm

Good afternoon … well late afternoon.  We’re doing this entry as the most productive thing that has happened in the last couple days.  We’ve been feeling under the weather. 

The first thing is that we got a cold, and then the coughing was so bad we lost our voice.  Then we had a return problem with our hyperplasia which meant we were bleeding internally.  So we went to the doctors and they found we ALSO had an infection, and while they were doing all that they discovered that we have diabetes.   So now we are on an anti-biotic, new diabetes medicines and day-time/night-time Vicks.  They wanted to start me on insulin and we said no that we weren’t ready for that.  I would like to get back to my normal doctor and have her confirm that is the only alternative.  We also wanted to see if watching our diet and taking the regular diabetes medications would work.  We’ve got about a month’s window. 

We didn’t like that the doctor (resident) that was subbing for our Dr. Albright was working so hard to gain me as a patient.  Maybe it is something that happens all the time – I seem to recall it before.  We had scheduled to see Dr. Albright and for whatever reason she needed a substitute.  We went in on Tuesday and had to return on Thursday.  We were disappointed because of this extra push … it being a lot to handle, and not getting everything done that was needed.  We had had to get a pap smear which is never fun and we were supposed to get an endometrial biopsy, but because of the high numbers for the diabetes – near 500 with the three month test at 9.6 they AND the infection, they couldn’t take a chance on further infection … because when the numbers are high for diabetes it is harder to fight the infection that might be possible.  It was frustrating because that’s what we’d gone in for and they seemed to be doing everything beside that.  I understood her logic, but the further we got the surer I was about wanting back Dr. Albright.  Beside trying to sell herself, she irritated me in that she didn’t cover all the bases, just the things that were on top of the list … Dr. Albright would see the whole picture and line me up for everything necessary to check everything.  And, I didn’t understand somethings like with this bad a cough why she didn’t use the stethoscope to check out the severity of my cold symptoms – I’d like to rule out we don’t have strep, bronchitis or Pneumonia.  That part is really wearing me down.

I think on Monday, I will want to call Dr. Albright and get a follow-up.  I will arrange for it to be after the first though to give the diabetic medicine and anti-biotic a chance to work, and by another week we’ll be on Medicare officially.  Maybe by then we can arrange to get on Blue Cross – Blue shield for the supplement and Part D.  I will call someone to check things out first from their 800 number.  I had checked with Dr. Marvin on Thursday, and he checked again with his person in billing and it turned out we were no longer on Medicaid – e-care list … so that confirms things of going one direction OVER the other.  I think the bottom line is that we are going to be happier if we can get BCBS instead of the mickmack of Medicaid even though we will pass for Medicaid, between the spenddown and regular cost – the BCBS will be less expensive and we should get more in the bargain.  We’re hoping at least.  This is been going on for a frustrating two years.  We’re almost past the problem area.  I hope

So that’s about it medically.  We are having problems of just wanting to sleep.  We’ve been tired and listless, our body aches and in general it’s just been hard.  Rich is giving me a break as to getting things done around here, but we had been sleeping in the sitting room and heard him walk by to the ironing board.  We said … we’re going to hear about his later, aren’t we?  He was pretty sure we would.  I think what he’s thinking is that in ten days it will be his turn to be served because that’s when he’s going in for his hip surgery.  I wouldn’t blame him for thinking that way.  Just the way we feel this moment, we don’t know how it will be possible.  Then there has been problems with leaking in the bathroom AND in the sunroom so everything has been feeling extra troublesome.  We can’t help and it seems to hurt even in thinking.

This note here is the best we’ve done so far.  Part of it was that Rich left the house for a while.  He wanted to run up to Walmart and stop at his mother’s.  That means Blessed Angels from above … the TV got turned off for a bit NO EXTRA NOISE!  I don’t think of it while he’s here as much as appreciate that when he is gone the only sounds we’re really hearing are the typing keys and the furnace.  I know sometimes we play music, but in this mode everything is too much.

I can’t complain too much about the taking care of us part.  He makes sure we crawl through the shower every day … makes us soup, sandwiches, and hot tea, AND sometimes he brings us Nyquil in the middle of the night when we start coughing.  We’ve been sleeping in separate rooms trying not to get him sick before the operation, and there have not been soooo much in the line of hugging, kissing, or back rubbing.  BELIEVE ME!  That’s starting to get REAL old!  That’s pretty much what we mean when we say … it’s real hard. 

Did I mention he got Vanilla CARAMEL tea??!!  Good Rich.  Lots of fluids *sigh*

There are other good things though that happened.  Before we got really into the cold Austin was here.  It was such a very nice weekend.  He came on Friday and stayed until Mike picked him up on Sunday afternoon.  He’s a GREAT visitor!  We spent as we thought most time talking and then being on the computer.  He used ours for a bit, and during those times we sat at the table next to him and cut fabric.  He was using our computer … I think the big screens are almost always nice.  He slept in both Saturday and Sunday morning, and each night before that he stayed up longer than us, but I’m not sure how late.  We had some really cuddly time.  It reminded me of back in the days that the boys fought to see who sat with us.  So in that respect it felt really nice, and in the other respect by the way he curls up it reminded us that there was a new baby in the house.  Not sure what happens there in a new competitive brother manner.  I think everything was natural and normal for what had been going on for him this last month.  I asked him on the way back to our house after picking him up on Friday about his brother, but he said everything was fine.  I knew there was much more than that, but I didn’t say anything more about it the rest of the weekend, until about the time that Mike was coming.  He called from 15 minutes away.  I told Austin I had figured it best not to ask and he said that’s what smart people do.  I giggled.  Yay on the smart Gramma side!  I know he’ll talk about it when he wants, but something I did or tried to do with the kids was to not ask too many questions if they didn’t want to talk … That way when they did want to talk to me – it was their choice and the conversation really counted for something.  Mostly they’d come to their own resolutions and were just checking base.  I want Austin to be comfortable like that too.  I know having a new sibling must be just an incredible amount of processing.  I know Mike and Laura will do the right thing.  I was really glad they let him come over.

We did get out once while he was here.  We saw the movie the Monuments Men with both Rich and Austin.  He got a pop and so did we and we got the popcorn, AND Rich got the licorice.  No … he didn’t sit by me … that would have put us in a sharing situation Hehehe.  I could tell at times that Austin was getting bored by the movie.  It wasn’t that it was above him, most likely more below him in that the time and space they were covering he probably has had figured out.  I know that at one time while he was here Rich asked from the Olympics where a country was and he was able to pin-it toward the right side of Russia.  Neither Rich or us had known.  Smart kid!

Afterward, we tried out a little local “diner.”  Rich had seen plenty of people coming in and out so he figured it was a good enough place in a very small community.  It was fine.  Both Rich and us had a meatball sandwich and fries, but Austin just shared the fries and didn’t want anything else.  Food was a little goofy.  He did eat Rich’s roast beef – forget the name in “juice”.  He didn’t like the cereal, so the next day we had donuts, and a bag of chips went down between him and Rich.  It was a good cue from his mom – we’d asked and it turned out Mountain Dew and Orange pop were just right.  Probably got him a little sugared up.  It’s hard coming into a situation where there is new food being presented.  Sometimes it’s best to stay with the premade stuff. 

He said he’d like to come back and that’s the part we want to here.  LOVE THAT KID!

It WAS a very special Weekend!

Not sure what else is going on.  I don’t think we had such a good session with Dr. Marvin this week – neither session.  The first one with 20 minutes left to go, we asked if we could go early, because we felt really really slow and boring and had nothing to say, but was concerned over wasting his time.  I think that was the right way to go, but then when we hinted we had nothing to say on Thursday he wasn’t so quick to let us go.  The resident doctor had called us back the day before and told us about the diabetes … we hadn’t picked up the part of needing to get shots of insulin.  But, we were incredibly down.  I think for a good 45 minutes Annemarie was out and we were like sliding in and out of her very dark world where she preferred that we just give up and die.  I know this doesn’t make sense to most people because they aren’t Multiple, but these kinds of drastic changes are very familiar to us.  She’s not as intune to things happening like Austin being her and the system sets it in such a way that he would never see that kind of depression, but on the other hand, there has to be time to let out those kinds of feelings and thoughts too and we’re appreciable to Dr. Marvin for those times. 

Not even Rich has a clue that there’s someone inside that is that depressed.  I think there was just a lot of physical reality that we had to accept this week that was very difficult.  Austin got tucked away in a safe place and it’s just now we’re starting to remember some of the good space we were in with him.  Lot’s of sleeping between then and now. 

There was another LITTLE good thing.  Rich came home a little bit ago before going to his mothers because he’d forgotten her medicine here.  We told him that last week we’d gotten on the scale and had weighed exactly 300.0 lbs.  We didn’t tell him that at the time, but this afternoon right before he got home, we got on the scale and it was 294.7.  This is NOT to say that is a great weight, but to not be in the 300’s is major and it seemed we were going on the way down.  So we’re going to need dealing with that in our reality net too.  The Resident doctor also didn’t check our weight either of the two days we were there.  We guessed 302, but this is a nicer number. 

We’re trying not to be very argumentative with Rich and food.  We did ask after the doctor left for a moment on Thursday to have Rich come in while we were talking to the pharmacist the doctor had set-up.  She talked about both medicine and food and Rich was able to ask questions.  The most I got was that sugar and carbs were no longer our friends.  I like sugar and Rich likes carbs … so new territory has to be carved out.  So now we’re practicing with grapefruits and oranges when we get hungry and he got us some sugar free ice cream sandwiches.  He was concerned about our serving proportions.  It should help …

When she got to the part of talking about the needle/insulin … we found ourselves in a very bad space where we were understanding, but not understanding at the same time.  We were trying to handle the concept of having to take a shot every morning in the stomach … and we just shook our head … she said something about us being responsible, and the next thing said was … no Dr. Marvin and Rich help us be responsible, but it doesn’t come naturally.  We told her about not learning self-regulation when we were two, and we still have problems doing the things we want to or should be doing because it is affecting us at all different ages and levels of responsibility.  I don’t know if she understood it, but she did seem to back down a bit saying we’d give the other medicine a try.  I didn’t think she had too much confidence, but it doesn’t make sense to progress if the “patient” isn’t going to be cooperative.  Again, we’d like to talk to Dr. Albright.  She doesn’t seem to see us often, but we’re more confident with her decisions.  Ok, I know this is a repeat!

Little things are already changing.  I don’t get my regular ice cream for dessert, less snacking, and no more treats going to Dr. Marvin’s.  He has a vending machine outside his office.  Things like that – we are just not asking Rich for the $1.  We both know what has to happen there.  The feelings we are having are very sad feelings.  We’ve known for a long time that Annemarie is tied to food … so in this sense there is a feeling that all of us have to help her.  And, it’s not going to be easy.  We’re pretty sure of that.  I’m guessing there will be a lot more anger and depression issues brought up with Dr. Marvin. 

I don’t know how he gets through time with us when we are like we were … very sullen and moody and we say very words.  In-between long pauses, we remain silent and in our own heavy world though most times when Dr. Marvin does interject … he’ll at least get an answer that is very few words.  Or, he might get a shake or nod of the head.  Annemarie doesn’t usually talk to anyone in the outside world including Rich.  Rich has a hard time being with her because he just wants her to feel better … and at that feel better so he doesn’t feel bad.  He’s not a very competent helper at that level.  He’s too impatient.  Dr. Marvin has patience, but it is harder for us too because we have to give Annemarie time which seems deadening to us.  Just long pauses where she is feeling or thinking, but is not being real communicative. 

We know some of the words that get used like dark, quiet and lonely, but we don’t have full images of what she is feeling … we just have a sense of what WE would feel like hearing what she’s feeling.  Like I can worry over her, be more cautious and conscious of her, but I can’t just go in and change the way she feels.  I think that a lot of the sleeping that is happening this week is our best means of taking care of her.  It helps us handle the dark feelings, and then it takes some of the pressure she is feeling off of us so we can negotiate in the world again.  This being able to write right now is a very big thing.  This last couple of days if we’re not sleeping we are checking FB, but that seems to be about it.  We’re not real active in talking to others, but it’s somehow comforting for us to know how others are doing and to add a nice thought here or there – sort of “protecting” our world by adding good thoughts.  I think this is at our own personal level of ability when we’re feeling really depressed.  It feels nice to skim past people who are “making-it” and it feels good to know there are others going through problems and as one of many can add our best wishes and prayers. 

I wish we weren’t as sullen as this … just seems the color of our world right now. 

Hmm had to take a little break.  We had an orange cut into 1/8ths.  It makes us sticky, but according to the plate the pharmacist was saying of the new Food groups – that I could have basically as many fruits and vegetables as we wanted.  Blah!

I was being treated for diabetes before and I liked NOTHING about it!  I’m having a hard time thinking of it as serious.  I know we were better a few moments ago, but I’m not so fine with it now!


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