Tag Archives: resources for those who need assistance

List of my insufficiencies

Kermit. Miss Piggy. Animal. Rowlf the Dog. Beaker. Fozzy Bear. The Electric Mayhem.  Statler and Waldorf. Rizzo the Rat. The Swedish Chef. (Just to name a few.) If you have ever seen any of the Muppet movies or The Muppet Show episodes, I am sure you can envision the characters, the voices, the humor. And sometimes God uses the strangest Muppet analogies to give me humor in spite of my insufficiencies.

This past weekend, I started my notes of things that need to be discussed with the doctors tomorrow. I see a team of different specialists: my main doctor for the MRI results and treatment plan; a pain team management doctor for the tumors in my hands and the pain in my neck/upper back; a follow-up with my doctor for the blood clot and a few others. It is a long day–early to late in the afternoon with all the evaluations being meticulous, but repetitive. There are the talks of future possibilities, different treatment options available, different steps or things to watch. My brain about half through goes into standby. So I started bringing a list. I do better with lists. I am a note-taker person. It helps me focus and understand or stay awake. 🙂

So this list is all the changes that have occurred in my physical body since my February visit. After my scribbles of a list was finished, I put my pen down and cracked my knuckles. (I know you are not supposed to do this, but it feels good and I figure my fingers are already worse off anyway.) I look at my hands and start to laugh. Out of nowhere I remember my MRI experience from last Thursday. That day, I thought I would take a nap during the scan, but the technician asked if I wanted a movie. I looked at the list anyway and figured I would just watch something fun and that I have seen before so if I fell asleep then it was no big deal. I skim the options fast and choose what I see as “Muppets.” Now assuming this was The Muppet Movie, I get cozy with my arms strapped in and headgear set in place. The movie starts and this is no Muppet beginning…it is Muppets from Space and I think, “Oh boy. I haven’t seen this in forever!” The first fifteen or so minutes, I was breathing so hard through my nose, because it was the only way I could keep from laughing!

I did end up falling asleep during the movie, but I don’t think I would have ever thought of this on my own if I had not watched that particular movie, because unlike the other movies where Kermit and Miss Piggy are the lead characters, this time it was Gonzo and Rizzo the Rat. Gonzo. Classic character. Classic nose.

gonzo http://www.imdb.com/media/rm2902164736/tt0158811

See that nose? If you are wondering how my left ring finger now looks as it continues to curl in–think Gonzo’s nose. It matches. Find the humor in the analogy and laugh. It’s ok, because I already did.

In making my list for the doctors, I found the “head and shoulders, knees and toes” song was the best way to organize my list so I started with my hearing; then my neck and upper back–more pressure and getting hard again to stand up straight or hold up my chin; my arm and hands–besides the “Gonzo nose” finger, my left middle finger has significantly started to curl as well. Whereas my right hand just went completely numb to my elbow making things like holding pens, buttoning my pants, putting in bobby pins, holding cups or texting, holding my toothbrush, tying my shoes, pouring coffee from the pot and typing more of a daunting task than they should be. My bowels still deal with constipation; and my legs/feet are weak. I can hardly get up off the floor or when I bend over to pet Muffy, if I am not holding on to something then I easily loose my balance and occasionally just fall over. Strange though, I have not had any pain spasms–Charlie Horse cramps in the legs–but no pain spasms!

I usually look at my list and I see my life becoming less independent. And if there is one thing in life that would be the hardest to surrender, it is my independence. It was the reason last year that I struggled so hard with moving back home. But where I could only focus on the losing part, God had bigger plans and he has been helping me to see that I can still live fully on my own. I just have a few speed bumps that take a bit slower t0 get over. Yes, there are days when I am completely frustrated at my hands or cry and say, “A 25 year old should not have this problem!” (like not being able to button my pants.) But to see past my insufficiencies helps me to see how blessed I truly am, because I have resources available to help and when the resources can’t, my family can.

Over the past few months, things of this have been changing: I got my own plates, bowls and cups that I can hold better; I have my special silverware and we just ordered more because I constantly use my fork and spoon now as it is. (See utensils here.) We also just ordered a button hook so I can button my pants; coiler elastic shoelaces so I don’t have to worry about tying my shoes or bending over when they come untied; and I bought hairbands so I don’t always have to use bobby pins. If I go clothes shopping, I have to be able to put the outfit on myself or I don’t buy it; I went back to wearing dangling earrings, because most often they don’t need backs so I don’t have to worry about trying to hold the tiny piece of metal; I gave away all but a few cd’s as I came to a peace about losing my hearing; and have been getting really good at finger poking at the keyboard when my hands otherwise are too tired or cramped to type in a normal fashion.

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest 0f the year, but as I gather my list of insufficiencies, I remember that when I can’t…He can.

I think I can’t, I think I can’t
But I think You can, I think You can
I think I can’t, I think I can’t
But I think You can, I think You can
Gather my insufficiencies and
place them in Your hands, place them in Your hands, place them in Your hands

~Relient K, “For the Moments I Feel Faint”

Other resources:

http://www.arthritissupplies.com/good-grips-button-hook.html

http://www.arthritissupplies.com/coilers-elastic-shoelaces.html

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Filed under Adjusting to NF2, Books and Movies, Hospital Trips

The Basics.

Hey guys.

Thought you might be interested in my new items that will help me maintain my independence as much as possible. 😀 I explained them in my last blog post, but I thought pictures would better show how they work as they are even a bit new for me. Why don’t we start as if I get up in the morning. I brush my teeth and take a shower.

The soap dispensers hold my shampoo and conditioner. I am trying to finish the bottles of my old ones. When they are done, I will just use the dispensers. They give me quantities of shampoo as if you were getting soap at the sink. 🙂 I have to squirt it a few times. And the handle at the right is what helps me get in and out of the shower. It was also what my arm was drapped around when the blood clot hit. Very sturdy!

I also use eye drops to help the dry eyes. I put this on the bottle today and came in the kitchen saying, “With the sound of thunder and speed of lightning- Look! In the sky! It’s a bird, it’s a plane, it’s Super-Tears!!!!” Needless to say, I think even Superman would have approved. 🙂 Because I don’t have the finger muscles to push the bottle, the clippers do it for me:

The rest of these things are random for when I need them. Such as when my back has the tense, sharp pain feeling–I heat up the rice jacket. It is flopsy (word?) but very comforting!

I might also need to cut open things in the kitchen, such as the bag in the cereal box or the covers to my tea. I also like to use paper to make special cards. Using real scissors gets difficult. It is not so much closing the blades part as it is having the thumb strength to reopen them. So, we got these new scissors that bounce back for you. All I need to do is practice, because I can’t cut in a straight line anymore. This might also be from not having the grip in the left hand to hold the paper still, but nonetheless, these scissors are great!

I decided that although I do not need this device right now, it is good to practice on. There might be a day when big pens just might not be what I need when writing. So, we found this neat device that makes your hand sturdy. It is hard, because I have always set my pens against my ring finger, and this device does not. Old habits are so hard to die. I hope to practice with it here and there to get used to it. I want to be able to at least do my signature the same with it. 🙂 That is my goal for now.

I have not had to use this YET, but it will probably be used very frequently: say hello to my new gas tank opener. 😀

This will look so much more appropriate than a pair of pliers. 😀 And lastly, what I love the most–to eat. These new silverware are fantastic! The bigger rubber handle allows me to grip the utensil like before but without hurting my hand. I have also noticed they are not ones for proper etiquette. At dinner tonight, the already used knife resting at the top of my plate kept falling off. Hmmm, I have to practice different ways to place them.

Of course the knife looks good resting on the plate in this picture (below), but that is because it was not loaded with gravy. 😉

We made our order from The Wright Stuff. Here is their website if any of you are interested for more information: www.WrightStuff.biz

What do you think? Any favorites? 🙂 I am adjusting well to these and really, they are for the better. I am not the first, nor the last to use resources like these. I am so thankful they are available for my use and independence. Now, if we can just work on the compression stocking part–I think that would just about cover all my problems. 🙂 Night everyone.

More to come…

10 Comments

Filed under Adjusting to NF2