Stories from the Chronic Life

The holidays are heading my way.  I look around and see nothing but chaos.  I have only bought one present so far.  The house is a mess.  I haven’t cleaned in a couple of weeks because a relative was sick.  I have stuff piling up.  Christmas cards to write.

AGGGHHHHHH!!!

Do you know the feeling?  It seems like with chronic disease, no matter how much you do, you get farther and farther behind.  When you are mentally up to a task, a body part won’t participate.  When your body feels okay, you’re battling fatigue.

It’s really hard to get things done when you don’t feel like you’re all the way there.  When life’s little nuisances interfere it makes it even worse.

Hopefully, I’ll get everything done by Christmas…sigh…

I’ve got about a week in a half to prepare my house for the return of my sister’s dog and cat.  The floor needs to be mopped, the spare bedroom needs to be cleaned up to make it cat proof, the bed has to be cleared off and the quilt needs to be washed, the living room needs to be straightened, and on and on and on.

How do you manage things when you know you have to have them all done by a certain day?  First, I prioritize.  The floor definitely needed to be mopped.  It’s been awhile (I’m embarrassed to say how long).  However, the dog and cat go everywhere.  I don’t want them laying on a dirty floor.

I took care of that item yesterday.  So, I can cross it off my list.  Mopping is a difficult task for me.  My shoulders are sore and I’m feeling muscles in my thighs that I had no idea I had.  Today I rest.

Second on the my list is cleaning off the bed.  This is where the cat sleeps.  I make her a little tent with the quilt and she hides out there during the day.  Then stalks us at night.  I hope to get that done tomorrow.

After that I need to vacuum the bedroom and move out some boxes.  The vacuuming is important.  The boxes not so much.  They should be moved so I can move in the litter box, food and water bowls, and so forth.  The cat has more stuff than the dog!

I think if I do something every other day, I should have the house animal proof and ready to go by next Tuesday.  I have a habit of overdoing it.  And, then I don’t want to do anything at all.  I’m hoping to avert that catastrophe.  That’s my goal anyway.

What tips do you have for getting things done?

When the pinky finger on my right hand started to gnarl, it really bothered me.  I could see the slow progression from a normal finger to a knobby, bent useless appendage.  I never realized how many things I do involve the pinkie.  Writing is a nuisance because putting pressure on it hurts like heck.  Holding a fork can make it wig out.

Lately, I’ve notice that having a bent finger can come in handy.  It’s like I’ve got this handy little hook.  Call me Cap’n, aarrr!  Things that were kind of difficult like pulling up my pants are much easier now.  All I do is hook that  out of shape pinkie in the belt loop and it’s easier to do.

I’ve got my own little evolution experiment going on.  I’m like those Aye-Aye’s who have that long middle finger so they can pull bugs out of the knots in branches.  Well, I’ve got my handy little crooked finger to help me pull my pants up.  Okay, maybe it’s not the same.

I’ve been taking Aleve for a year or so now. One of the things that Aleve’s manufacturers tout is their new “easy open bottle caps”.

HUMPH! Either I’m really uncoordinated or my arthritic fingers aren’t suited to easy open. It took me a long time to realize that you have to turn the cap and free it first. Then you have to press in two tabs and twist the cap off. I don’t know about you, but I don’t have enough working fingers to hold in the two tabs and then twist the cap without the bottle slipping to the ground and spilling all over the floor.

Once I get a new bottle open, it’s easier after that. The first twist and open is a real pain though!

I sometimes wonder if these so called ergonomic ideas are ever tested on the people who could benefit from them. It seems like the whole press and hold thing is more difficult than the “push in and turn” method of old pill bottles.

Wow! It seems like this year is flying by. Between dog health problem, parent health problems, and my own assorted problems, I feel like I’m perpetually behind.

Do you ever feel that way? Sometimes your illness takes up so much of your mental space that days can fly by before you realize that a couple weeks have passed. Then you realize you haven’t done diddly in that time.

I took a look around the house today and realized I hadn’t vacuumed in two weeks. Gasp!!!! No wonder their were dusty tumbleweeds rolling around the hallway. I like to stay on top of things but man, it’s hard when you spend your days just trying to get by.

Before I know it it will be Christmas, and then what will I do????

I’m in charge of the medical records, appointments, etc. for a parent. This person sees 4 doctors on a regular basis. In January a simple medication change lead to mass confusion. In order to simplify and insure that each doctor knew what the other was doing, I started to keep a Doctor Visit Record.

This sheet will be updated after every doctor visit. Then it can be printed out and given to each doctor at the appointment.

The sheet is kept in date order. At the top is a summary of why the person is visiting the doctor and if there are any new issues to address. Then under that is a list of all current medications and dosages. Then each appointment is listed from recent to last. The date is given, the name of the doctor, the diagnosis, tests ordered and results, and any medication changes. Also given is any health changes on the part of the person. Did a change in medication cause side affects?

By keeping an updated record, I hope to make it easier for my parent to retain independence and privacy by not having someone go with them to every appointment. I would also like to ensure that each doctor know exactly what the previous doctor has done. In this way, I hope to prevent mistakes and miscommunications. And, the chance that I may have to call the doctor and explain everything all over again.

I was embarrassed to find that I haven’t blogged since March. What the heck have I been doing with all my time????? Sad to say, I haven’t been doing anything of note. It’s been a trying year and I have found myself drained physically, mentally, and emotionally.

At the beginning of the year, my Dad’s emphysema worsened. After a month, we finally learned that a combination of things lead to the situation. By the beginning of March, he was back to good health.

Then my elderly dog got ill. She had a bladder infection. And then two weeks later it came roaring back. She was sick to her stomach and for almost a week I fed her by hand 8 times a day. She got back to good health by the end of April.

In between Mel’s Animal Day Care was in business. I took care of my brother’s 2 puppies and older dog on three occasions–one for as long as a week.

By May I found myself in the doldrums. I wasn’t depressed, I just didn’t have any stamina. Fatigue had me in it’s grips. I was able to do the regular stuff, but my brain couldn’t wrap itself around anything challenging.

Now, I find myself with a list a mile long and trying to get back on solid ground. My motivation has reached rock bottom.

I am attempting to get it back together. I’m making myself work on my list every day. I haven’t accomplished much but at least I am working in the right direction.

How do you re-motivate yourself when you don’t have the energy to move forward? Post the tricks you’ve learned. I could use the advice!

So many times in life, we have to take the focus off our own problems and help others in need. February was like that for me.

My father has emphysema, but it’s controllable with inhalers. At the end of January, he became very ill. Now that we’ve sorted it all out, there were three things that happened in a a span of a week. He had a reaction to a new drug, Spiriva, he developed a bronchial infection, and he was retaining fluids in his heart and lungs because he was taken off his diuretic.

The combination left us fearful and bewildered. He went from being able to walk 2 miles a day to not being able to get out of his chair without breathing troubles. It was so hard to watch this very active person be reduced to old age mentality.

In this case, it all worked out. Once each problem was indentified and resolved, his breathing returned to normal. The constant fatigue went away. It still took about two weeks for his body to return to health.

Things like this are not only scary for the person suffering from them, but for the family. One starts to think about how much care the person will need, will this be the best shape they’ll be in for the rest of their lives, and so on. As a chronically ill person myself, the extra burden of keeping track of the doctors, treatments, and medications of another family member can really be overwhelming. Organization and support are the things that see your through.

I would like to wish all my readers a Happy 2008! May it be a prosperous, enjoyable year filled will whatever you want it to be.

I have to apologize for the lack of posts at the end of the year. I had so many things to do with the holidays that I didn’t take time out for other things. It’s difficult to juggle time and abilities when you live with a disability. I find that I get so much done then I’m fighting fatigue for a couple of days. When I get it back together, I’m right where I started! UGH!

I’ll try my best to bring fresh material to the blog in the new year!

HAPPY NEW YEAR!

I can deal with my own limited abilities, but I really have a hard time when children are going through the same thing. We accept that adults will suffer more pains as they grow older. Children should never be pain though!

One of my 11 year old relatives was diagnosed with OCD (osteochondroitis dissecans) last March. After many tests, they determined their was a fracture in the ball of her femur. In OCD, the fracture doesn’t heal. She couldn’t walk without pain and her knee kept catching on the notch and locking up.

The first course of action was physical therapy. She seemed to do really well with that. After a month of crutches, she no longer needed them. It appeared that the doctors did the right thing.

Right after 4th of July everything changed. Her knee started popping again. And, then she was back on crutches and in pain.

The doctor decided it was time for surgery. The idea was the explore around maybe insert some pins and drill some holes. With OCD they are never sure what the outcome will be after surgery, but she couldn’t walk anyway so they had to take the chance.

In August, she had outpatient surgery. They removed some tissue that was in the wrong place. They drilled small holes around the fracture to assist healing. She went home and spent 8 weeks non-weight bearing on crutches.

She’s now in physical therapy. She’s got some pain but now it’s different pain. Only time will tell if the surgery heals her OCD. It’s possible it may never heal fully and then she might face a life of disability. Things are looking good so far.

After going through what I’ve gone through, I hope to God she will heal! No child should have to go through this kind of discomfort. Children should never have to deal with chronic pain.