Wow! I Actually Can Finish Something!

A few weeks ago I decided that I wanted a Christmas themed scarf. Thanks to my inability to regulate my body temperature I usually do not wear a coat, even when it gets really cold. Instead I usually layer and then peel off layers as necessary. One of my favorite cold weather accessories are soft, warm scarves. I am not sure why I have never thought of crocheting myself a scarf. I have never ventured into bulky weight yarn. As a youngster growing up in a family full of women who thought that the only yarn in the universe was Red Heart Super Saver, I never even knew other yarns existed. Image my wonder as I found the world of yarn types and textures. Especially now, living in the fiber renaissance in which we currently find ourselves. So I took the plunge. I bought the three balls of Lion Brand Homespun Holiday. So here it is for you to marvel over.

It is a beauty and it is as soft and comfy as it is beautiful. Here is a link to the pattern which is available free on the Lion Brand Website.

Angel the Wonder-dog was quite the un-willing model. Apparently being four feet away from her loving mom is just too much for her to bare! What a sweet, pink nose puppy dog!

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Not a Pain in the Blog

In my mind I keep insisting that this is not a “pain blog”. This is not a “Rheumatoid Arthritis” (RA) blog, nor is it a “Fibromyalgia Blog.” I am sure that there are plenty of those out there written by more capable people that me. So then why do I keep writing about pain. Well, because it is part of who I am and I do not like it.

I have taken countless pills to keep it at bay. I have let doctors cut on my flesh and stick scary needles into my joints to try to stop it. I have had nerves “burned” in an attempt to outsmart it. I have injected myself with a medicine that clearly states that one of the possible side effects is that it can cause cancer. CANCER! I have cried, prayed, begged and bargained with God. But still nothing changes, not for the better anyway. None of it has done much, if anything at all to help quell the screeching of this monster that insists on sharing my body and my life.

So what am I left to do. Change the things that I can. Today I told the woman that I co-lead my daughter’s Girl Scout troop with that I can not continue at the same capacity that I have been at. I am tired of spreading myself to thin. Shortchanging my husband and kids and being stressed out all the while. There is an economy at work within my body. I only have so much to give, and I have to give it in the best and most important way that I can. I feel so selfish though. We all have full, busy lives. We all have our issues, right now I am just putting mine first. It is the one thing I haven’t tried to help myself. I have had to cut out so much over the years. I used to race from one mommy volunteer commitment to the next. Room mom – check, PTO – check, Fundraiser – check, Scouts (both Girls and Cubs) leadership – check, Children’s Ministry Lead Teacher – Check. Constant classroom volunteer – checkity-check –check-check! And I loved every last bit of it. I wanted to be a mom as long as I could remember. College and career were a vehicle to get me what I really wanted, my family and my children. Now I have them. I guess I just have to learn how to appreciate them differently than what I had in mind.

Growing up I was a “day care kid” who grew into a “latch-key-kid” (that was before latch-key was a program offered in school buildings by the YMCA) . I wore my house key around my neck and I would let myself in the house after school until my parents got home from work. I did this from the age of eight on. It was fine. My parents loved me and took great care of me, they just both had to work hard jobs fro long hours. I could never wait for them to be home.

I am sure that I caused my mom immense heartache because every year as the school year began I would beg her to be a room mom. She never could because of work. So I made sure that I was not going to miss out on all that with my kids. The oldest two are teens now and still insist that some of their favorite school memories involve their mom. (Allison would also point out that I am also the highlight of one of her least favorite school memories too. Sorry about dancing in the Fifth Grade hall to “Whooly Bully” sweetie. What can I say the music moved me and they were supposed to be dancing too!!)

So now I have come full circle. I picked up more and more, and one by one laid them down again. This is the last, but it has to be done. At least for now.

Technorati Tags: Chronic Pain Sucks,Rheumatoid Arthritis,Fibromyalgia,Kathy

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Lacking Direction

I am in need of direction. Both in my blog, and obviously in my life as well. The name I chose for my blog sums up this huge need in my life, “Kat Can and Does”. My thought behind the title is that I do a little of a lot. I like a lot of things. I like to start things, but then I lose interest, but why is that. It frustrates me that I do it, but it seems that I can’t change it and it has definitely not improved with age at all! When ever someone needs a volunteer, I can not say “no”. It is as if I do not have the word in my vocabulary. The problem is that I get myself so overwhelmed and stressed out because I “can and do” way too much.
As I said, this is not a new problem, but in the last several years it has become a lot worse. I was diagnosed with Fibromyalgia in 2000. I had no clue the toll that this would take on my life. I fettered along, not great, sometimes terrible until the summer of 2007 when all hell broke loose in my body. I was diagnosed with Rheumatoid Arthritis after having my first full blown flare. I was swollen in most every joint in my body and every joint burned with pain whenever I moved. This began my major life change and it was the birth of my allocation of energy.
What do I mean by “allocation of energy”?? I mean that everyday I have just so much of myself to give. So much strength, so much energy, so much thought, and the list goes on. It just sums up to be that I only have so much of me to go around. When it is gone, it is GONE! And I absolutely hate it.

After some searching I found out that someone else had perfectly encapsulated my thoughts and feelings. Christine Miserandino, who created the wonderful website “But You Don’t Look Sick” as a haven and resource for people who, like myself, have invisible chronic illnesses. In her essay “Spoon Theory” she sums up all that I have been trying to help my family and friends to understand since this odyssey began almost ten years ago. I encourage everyone to click on the link and read it. Then realize that we all know people who have invisible chronic illnesses. Just because someone doesn't look “sick” does not mean that they are not in significant pain.
So where does that leave me. I am a blogger without direction. I have a lot of loves and interests, but that makes me seem and feel more splintered. If I try to focus on one thing I, I know I will stray. So I guess that this blog is just me, what happens to me. It is how I feel and what I do. My ever-present counselor, that does not charge me a $40 co-pay for every hour that I ramble on to it.

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Disabling People Who Have Disabilities

Quality of Life for people who have disabilities is subject to many external forces, but all roads lead to the bank. As the parent of a young man who has a disability and a former professional in the fields of disabilities I have seen this through two different sets of “glasses,” but I have always hurt when I know that people, who are among the most good hearted and, in some cases, innocent among us are affected by businesses and governments which they have absolutely no control over.

As I drove home years ago with my son’s first wheelchair in the back of my van (actually it was an orthopedic stroller) and I flipped through the volumes of paperwork that had come along with it I was blown away by the number on the bottom line. This stroller was $6000! It was wonderful. It was the best positioning for my son at that time. It was not worth $6000!

Timmy looked so good, so comfortable in that stroller. I loved cruising around with him in it and it never failed that some young mom would ask my quizzically about where I bought this “amazing” stroller. To which I would sigh and tell them that the $6000 price tag was only part of the true cost. First you had to join the ranks of parents of children who have disabilities. These conversations eventually got me thinking, the most expensive Peg Pergo did not come close to the cost of Tm’s stroller. The problem seems to come in when things cease to be a want and they become a need.

Today Missouri’s Governor, Jay Nixon, announced his proposed budget for fiscal year 2011. It did not look good for the state departments that serve the needs of people who have disabilities. The early news reports speculated that Medicaid cuts would be a large chunk of the millions that he would have to be cut.

Politics is a strange subject for me. I really do not like having to deal with it because Democrats or Republicans, they will all say anything to get elected. They all lie. They all disappoint. But since I became Tim’s mom it became clear that I did not have the luxury of keeping my head in the sand and avoiding the whole stinkin’ mess. So I educated myself. I took part is Partners in Policymaking which is leadership training for parents of children who have disabilities and for adult, self-advocates who have disabilities. I went through eight weekends in eight months and learned more than all my years in school afforded me.

Since I graduated from “Partners” in 2001, I have followed each budget through the cycle of approval that it goes through and have advocated for the needs of Timmy and others like him.

I just wish that I didn’t have to do it. I wish that politicians would be noble men and women and would do what is right. I wish that I could write Thank you cards to my legislators, instead of letters explaining the economics of wants versus needs. (Pediasure that costs $2 a can, diapers that are over a dollar each and the aforementioned durable medical equipment costs, which alone could bankrupt a small nation.)

I am not a total cynic about politics. I understand that it cannot be all things to all people. But for too long people who have disabilities have been forced to bear far more than their fair share. So many people who have disabilities are so vulnerable in so many ways.

Our former governor, Matt Blunt, and his cohorts seemed to think that the disability community was the answer every time the question was where to cut the budget first. Take a look at THIS article which I was interviewed for back in 2006. (You will have to scroll down the page and look for “Medicaid Cuts in Missouri”. Unfortunately the only place that I can still find this article on the web is in a re-print from Hawaii.)

So often when people see me with my son, or I tell someone about my Timmer they are inclined to say ridiculous things like: “You are so special” or “You have the patience of a saint”, I know that they are trying to be complementary, but it is incredibly frustrating. So, if you have made it this far, the one thing that I really want you to take away from this is that Timmy and his disability are not the problem. Timothy having Cerebral Palsy is NOT the problem. All of the things that I have written above this paragraph—the cost gouging, the having to stretch myself thin to deal with politicians who couldn’t care less until the crap hits the fan: these are the things that make having Timmy as my son anything less than complete and total joy.

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H(ell)1 N(o)1

Over the weekend my middle son, Sam, seemed to be heading toward an addiction problem with cough drops. I was ready to stage an intervention when he asked if he could take the whole bag downstairs! At that point I reached up and felt his head and sure enough he felt a little warm. (Yes, I am so short that I have to reach up to feel my 13 year olds forehead!) I whipped out the thermometer and it revealed that a little warm meant 102.6 degree fever. A quick trip to the doctor and sure enough our family has become one of the ones that are causing the “national emergency”.

Since he has asthma Sam was able to get Tamiflu, but the doctor seriously downplayed what this highly coveted, and hard to come by drug can do. And I quote, “It won’t make you feel any better and it won’t kill the flu, but it might make it a day or two shorter. Or it might not!” Uhhhmmm, okay, thanks—I guess. Sam is continuing to sink into suffering but hopefully he will turn the corner soon.

As my luck always has it his sister, my oldest, started feeling really tired and “yucky” last night. She was in bet by 5 p.m. which is highly unusual for her. Sure enough this morning her temperature was 101.2. So I am off to call the doctor and see if I need to bring her in or just assume that they live in the same house that she has the same thing as he does! Sigh!

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Thirty-Nine

My hubby and I have been together since 1987. Back then he was 17 and I just turned 16. It was a crazy year because it was the year that my dad died. I am grateful that Matt got to meet my dad and that dad got to meet Matt. My dad liked Matt, which is more than I can say for my previous boyfriend.

So today my High School Sweetheart turns thirty nine. It is so odd for me when I stop and think that I have been with this man longer than I was without him. Twenty-two years we have been together, twenty years eight months married. I have been with Matt longer than I was able to be with my dad. I miss my dad so much and I so wish that we could have spent more time together. I wish so badly that my kids could have known their grandpa. One of the last things that my dad said to me when he knew he was dying was “Please tell your babies about me.” As if I couldn’t, daddy.

This was not supposed to be about me and my dad, it just took that turn. It was to wish my Matt a happy 39th birthday. I fell in love with the teenage boy that you where, but I stay in love with the man you have become. I love you.

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