Friday, October 30, 2009

Ramblings from the mind of a tired person

I am, in a word, exhausted…

I took Ron to see our family doctor on Monday and she referred him to a gastroenterologist. We saw that doctor on Tuesday. Ron had to swallow a capsule containing little B-B-type things and on Sunday, he’ll get an x-ray of his colon to see how many are still in his system. Then, on the 9th he’ll have a colonoscopy to determine if he’s got anything growing there that he shouldn’t have. Not sure how long before we get test results back on those. Dr. Alvarado’s office called today to say his thyroid function was a bit down, so they’ve called in another medication for him to take. What’s one more anyway, when you already take 10-12 per day???

I guess I still have a Vitamin D deficiency; I’ve been on over-the-counter medication for a while now and it doesn’t seem to be doing the trick, so I get a new medication, too. Oh joy… I can hardly wait.

The hole in Ron’s right foot is not healing. It looks like someone has sliced down into the meat of his foot about an inch. That doesn’t sound like much, but it sure looks like a LOT when you’ve got a hold of the foot and you’re looking directly into the hole. Ron goes back to see Dr. Heady on November 4th. I don’t think he’ll be too happy with how it looks. The callous is growing over the hole, but the hole itself is not healing. We really cannot afford physically, emotionally, or financially for Ron to have any more surgery on that foot or for the wound vac to be put back on. I think Ron would refuse and I can’t say that I would blame him. We’ve already been five months trying to get this to heal. He’s not walking much at all – mostly just around the house – so it’s not like he could stay off of it much more than he already is.

On November 16, Ron sees a neurologist to determine what can be done, if anything, to help stop the tremors. Even when he is resting, you can frequently look at him and see his whole body twitching; some days it is worse than others. I will sometimes just put my hand over his and hold onto it, hoping, I think, that the pressure of my hand will stop the movement. It usually doesn’t but sometimes I feel that I just have to do something. It’s all so depressing. Last night, I woke up to him squeezing on my arm, so I asked him what he needed. He wanted to know why I was waking him up; he didn’t know he was twitching enough that it felt like he was squeezing me. He is very depressed over the whole situation. There are a couple of class action lawsuits against the makers of the medications he took that have been proven to cause these tremors, but because he has so much other stuff wrong with him, no attorney will take the case. So, others with fewer symptoms will get compensated but he will probably just get worse and worse until he can no longer do anything for himself.

Ron is pretty depressed and upset right now that people he believed cared about him don’t pick up the phone and call or come by to see him. Some of them have said “well, he can call us if he needs anything” but they just don’t get it – he can’t see the numbers on the phone (they blur as he tries to concentrate on them) and his fingers don’t often hit the right numbers when he’s trying to dial. Even on his cell phone, which is easy to use, he’ll frequently hit 2-3 numbers at the same time and the wrong one will register. He is not supposed to drive, so he can’t go visit. Even if he could drive, he can’t walk far enough unaided to get into a house or up stairs. Whatever happened to people visiting shut-ins? Am I just expecting too much from people – people in the ministry whose JOB it is to minister to those in need? If someone could tell me that I’m out of line, I’ll concede and move on. I’ve mentioned to more than one person – people who are in touch with ministers and lay persons who visit the sick – that Ron would really love to have someone come visit him during the day to pray with him or read the Bible to him. What kind of response have I gotten? None – no one – zip – nada. My next phone call may be to the Mormons because I know they’ll visit and read the Bible to him.

This all kind of sounds like I’m whining – and I guess I am. I don’t know if it goes with the territory or if I’m just being difficult. Lord knows, he doesn’t want to be in this situation any more than I want him (or I) to be in it. He said the other day that he really feels like he’s going downhill and he doesn’t know how to stop it. I am so numb to everything that I don’t even know how to react to something any more. I think I have to stay back just a step so I don’t have a nervous breakdown thinking about all the stuff that’s wrong with him. I don’t want him to think I don’t care, but I’m to the point that I don’t need to hear about every new pain he’s got, or that his hands are stiffer, or that he can’t grip something, or that when he tries to hold a fork he gets spasms up his arm. I just don’t know how to deal with all of it. TMI! TMI! TMI! (just kidding…)

I don’t like the position that I’m in any more than I like the position that he is in. I feel a tremendous burden and weight on my shoulders with all that I’m responsible for. My house is a mess (I’m too tired or too busy to clean) and I just look at it, then go into the bedroom and shut the door. No one is really cleaning. Everyone picks up, but no one is really cleaning. My back can't stand the heavy stuff like moping and running the sweeper so Amy will run the sweeper but no one dusts unless it’s me. LeCole is busy doing endless loads of laundry (LOL - I don't remember ever doing that many clothes during a week but I guess I did since I had three at home) and will sweep some if Amy's not home. I usually clean the hall bathroom but I can’t even begin to say when someone has last mopped. When I go into the kitchen, I’m usually picking up dishes, loading or unloading the dishwasher, cleaning off the counter, turning out lights, clearing stuff off the table, taking out trash, etc. There is always something to pick up and put away.

This ended up being way longer than I intended – but I did say “ramblings” in the title. I promise, my next post will be much lighter and I’ll be in better humor. This is the only place I have where I can vent. I can leave it here and move on because I’ve got it off my chest. I do spend a lot of time talking to the Father about my troubles and I know that He has me securely in the palm of His hands, and He will guide me through. I know that with the very core of my being, but there are those times when I’m still very much a selfish human and want to get out from under the troubles and move on to better pastures.

Sunday, October 25, 2009

The rules of life

Rule #1 - Don't get on the scales the morning after having a "girlfriends' weekend out."

Rule #2 - If you broke rule #1, don't sweat the three pound weight gain the girlfriend weekend caused.

Rule #3 - Don't let breaking rule #1 and #2 determine your feelings of success or failure.

Rule #4 - If you can't obey rules 1 - 3, have some chocolate!

Saturday, October 24, 2009

The circle of life

I've been finding myself deep in thought these days. Not sure if I'm contemplating my future, reminiscing over the past, regretting parts of it - or maybe a combination of all three. I look at my husband while he's sleeping and wonder what is going on in his body and his mind. I can't help but wonder how much longer I'll be blessed with his physical presence in my life; he'll always be in my life but not always physically. I watch Isaiah at play and marvel at the person that he is. I think about Alexander and Kaitlyn - waiting for that day when I see our baby girl for the first time, lose myself in my love for her, and give Alexander a big hug and kiss from his grandma. I want to catch up on all the things that I've missed on his growing and where he'll go from here. What goes on in his mind? What is he thinking and how can I get him to share it with me?

There is a circle of life that encompasses us all – dream – hope – faith – live. You can’t have one without the others and life is not complete without hopes and dreams. I have to admit, I am a dreamer. Dreaming gives me hope for the future, for without hope you have nothing. So, there you have a continuous circle… Live…dream…hope…faith…live… the circle of life.

I dream about many things – futures for my children and grandchildren, better health for my husband, happiness for my friends and family, and even how I can be of service to others. I am a “rescuer” and sometimes I dream about being the “rescued” one instead.

Does that make me selfish because I want to be resuced for a change? It's nice to have LeCole here and willing to do Ron's wound care. I can do it, but it's not something I enjoy doing. Amy can do it, but she enjoys it less than I do. If I'm out of town, Keith will come do it but it's not convenient for him to do so. I love having Amy, LeCole, and the kids around and it gives me a break because I don't feel bad when I do leave Ron for a bit. I have gone to KC without him (he can't get into anyone's house because of the stairs) but I don't like to go without him. I did a "girls night out" slumber party last night and had a great time and didn't call him once (shame on me!). But, today when I saw him and realized how badly he feels I felt bad that I didn't call him last night or this morning.

Oh well - life goes on and we do the best that we can.

I could cry, but it wouldn't help

And, I get anxiety attacks when I can't breathe - and we all know that crying really does a number on your sinuses and breathing capability.

Ron's "holey foot" is definitely more holey. Our resident medical assistant says the skin was starting to close over the hole, but it wasn't healing inside. She cleaned it up yesterday and said it's very spongy inside. I tell ya, the man just can't catch a break. LOL - I guess that means I can't either.

We go to see our family doctor on Monday. He asked me this afternoon if I was going to get the doctor aside and tell her my Alzheimer fears. I said no, that I was going to address them straight on. He's not confused like he was last year, but he's definitely not thinking clearly. Giving out his financial information over the phone and then taking medications that he didn't remember taking have indicated even to him that there is a problem going on.

We truly just take one day at a time. We trust in God and believe in miracles. If God's answer for Ron is to take him from this world, then as much as I would hate it and miss him, I know that he would no longer be suffering like he is today. If God's answer is to heal him and restore his health - then I wish He'd get with the program and get it done!

Until then, we'll just keep on keepin' on. Keep those prayers coming.


It is the facade of life... The way to hide the truth. Inject a little humor into conversations and you leave people thinking what a great sense of humor you have.

Humor makes all of the day-to-day challenges more manageable. Without it, life would be totally depressing. Who really wants to hear "how you're doing" when they ask it. Most of the time, do they even wait for an answer. The pat answer of "I'm fine" covers all the bases and gets others off the hook to actually listen to you.

My new answer is "I'm good, thanks" and it has a double meaning. If all is well in my world, then I am definitely good. If not, I'm not doing anything "bad" behavior-wise, so "I'm good" is true in a behavioral sense. It takes care of everything.

I don't have to lie and say I'm fine, when I may not be, and you don't have to listen to something that doesn't interest you. Gets us both off the hook.

Aren't you glad I'm good?

Thursday, October 8, 2009

My first award! One Lovely Blog Award

Pat, my friend over at A View from the Edge gave me my first blog award! Thank you very much for the award! I appreciate it and get to pass it on. (I started this post on 10/8/09 and although it shows 10/8, I am just now getting back to it on 10/17. Life... very busy.)

So, here are the rules of the "One Lovely Blog Award".Accept the award, post it on your blog, together with the name of the person who has granted the award, and his or her blog link. Pass the award to fifteen other blogs that you have newly discovered. Don't forget to contact the bloggers to let them know they have been chosen for this award.

Here are the blogs - in no certain order (I don't have 15 but I will be adding to this list):

Isaiah's (Eyes) "I"s - this one is mine and I have to say that I do think it award-worthy, so I am bestowing it upon myself.
The Wilson's - one of my co-workers with the most lovely set of triplet girls. Total cuties.
Tammy's Place - a scrapbook, card making site. She does great stuff.
Trying to Stay Calm! - Shauna has great posts and she never ceases to have something good to say or give away.
Kathy's Kampground Kapers - I know, I'm not first but I enjoy her blog so much that I have to reward her, too.
Jill's Paper Jems - great site for paper-craft lovers!

Saturday, October 3, 2009

Health updates

Let's see... where to start.

Ron's kidneys are doing better. His colon is not. It's having difficultly letting him do his "bizniss" on any given day. Gastroparesis is an ugly thing to live with. He takes more than one medication to help provide him with relief but nothing really works very well. One new item is an injection called Relistor. It's specifically made for narcotic-induced colon paralysis. He also takes Polyethylene Glycol every day. It doesn't help much but I guess it does keep him from exploding. If not, the headlines might read "This just in... Kansas man says he was minding his own bizniss when the s**t hit the fan!"

The tremors are worse and he jerks a lot during the night. It's difficult to get really good sleep when I'm waiting for the bed to jerk. Some nights I sleep very soundly (or so he says) but other nights, I know I'm just "waiting" for the next jerk. It's so much fun.

He says his hands are worse than they've ever been. It's discouraging for him, and for me. I don't want to "not" listen to him but I hear him talk about how badly he feels so often that I think I'm numb to it. I think that I just can't take any more. I'm already doing as much for him that I think I can do and to think that his hands might be the next thing to really "go" means I'd have to take over even more. I just don't know that I'm up to it. I lay out his pills every day now because his hands shake so badly that it's really too hard for him to do it. He doesn't do his insulin shots very often, either. When he does, he ends up making himself bleed and then there's just a mess on his shirts.

He can't put his brace on, so I do that and then, once it's on, I have a hard time getting his foot into the shoe. My thumbs hurt so badly some mornings that it's a real struggle to get his shoe on. I have figured out how far I have to unlace the right shoe and if I can get my forefinger in the "loop" at the back of the shoe, I can do it with one or two tries. The left shoe is difficult because the prosthesis ends at the same point where the laces start and many days his foot just pops right out of the shoe. He doesn't have much foot to put into the left shoe and the placement of the tongue/laces makes it difficult for him to keep it on once I get it laced up.

Ron can still only walk about 10-20 feet at any one time before he has to sit. The "new" hole in his right foot is slowly healing and (thank God!) it never got to the same degree as the last blister got. I honestly don't think I could manage another $50,000 bill. I still don't have the last bill from the wound vac paid (I still owe nearly $5,000). Ron's using the wheelchair when we go anywhere that I can't drop him off at the door and use their wheelchairs. He can take himself to our family doctor to have his blood drawn but it's difficult for him. I almost really need to do that, too. It's just a matter of the financial aspect of it. I've not used as many FMLA hours this year, but I also was not approved for as many. I can have up to three instances each month, whereas last year I had up to three instances per week.

Life, as usual, has its ups and downs. Life is definitely better than the alternative but he has mentioned more than once that he doesn't know how long he can live like this especially if he continues to decline.

I keep saying God's not finished with him yet and that's why he's still here. It may be for my benefit, or it may be for his benefit. But, I'm sure that when it's time for him to leave this world that God will have a pain-free place for him in the next.

A+ and A+

Two classes down - two grades posted. A+ in each.

Not bad for an old lady who has been out of school for a long time.

The classes I'm currently enrolled in will be a bit more difficult for me. One is financial management and numbers are not my thing. The other one is a philosophy class and it's also different. The level of work required for each class is quite high but I am up to the challenge. I'm looking forward to learning more and more.

The amount of work required and the time required does mean that my blog postings will be less frequent. I had a goal to post every day but I've not been able to do that for quite some time. I do need to do an update on Ron's health and the hole in his foot, so that will be my next entry.

But, for now...

Go, Teresa - go, Teresa...