Self help

When I was in grad school, a professor told us-if we ever feel down, we should go to a book store and look around the self help section. Then we would see that there are tons of books about tons of problems.

Just knowing that can make a person feel better: we see that we are not alone and there’s a way to get through and be okay.

With my continuing struggles, I have found hearing music is key for me. More often than not, I have  wanted to give up. Then I find these songs that encourage me. I feel stronger with my playlist cheerleaders.  The circumstances that people experience may be different, but the feelings are the same.  If other people can fight and overcome, so can I.

Shackeled

If I just sat around and drooled instead of trying to handle stuff, I would probably accomplish more.

Buddy

Buddy decided to re arrange my closet. Look how happy he is with his work!

Ebenezer Seinfeld

This is Ebenezer Seinfeld. I just thought you should know.

Going Forward

This week has been quite a learning experience for me or a refresher course. The lesson is patience and persistence and assertiveness.
These may be 2 characteristics I am tired of needing to use. However, I have used these abilities in the past. Now I have been chosen to become a patience, persistence and assertiveness expert. I don’t know how else to look at this.
I have been experiencing significant pain in my upper body for several months now. I waited to seek help from any doctor as I have had a multitude of orthopedic surgery and live with severe juvenile arthritis. I have been living with this for 31 years, so it makes it hard to know when to seek help.
That means when I do, it’s severe pain that I have had consistently while doing basic activities such as sitting at the computer, getting dressed, trying to sleep etc.
I always expect that when I go to a doctor, they take me very seriously and provide me with necessary, appropriate and effective treatment. Therein lies my mistake. Therein lies my lesson to be learned: patience, persistence and assertiveness.
I have been seeking help from doctors for about a month now and still suffer with my everyday pain issues.
The problem is that I need to see a specialist for spine and apparently this is no easy task, especially when you are a new patient. I am not used to being a new patient anymore. If feeling horrible isn’t enough for you to handle, trying to get help for said new problem may just be the thing to put you over the edge.
First you call a specialist. Then they ask your insurance. Then they say they don’t take it, even if you have out of network benefits (something I never understand). But, you go through this process a dozen times only to get an appointment with a doctor that you don’t like, don’t trust and think doesn’t have the skills to help.
So you regroup and decide to do more research focusing on expertise. You find the (supposed) best doctor in the state. The office is actually somewhat normal (except they don’t answer the phone, you leave a voicemail). That’s very stressful as you have to wait for them to get back to you! It takes a week to get an appointment that’s 6 weeks away. You freak out saying, I can’t wait six weeks! I am in pain everyday and can’t sleep! So you don’t accept the appointment thinking you can see someone faster somewhere else……MISTAKE!
It does take a long time to get an appointment with a good doctor because there aren’t enough good doctors around. If I was calmer and thinking more clearly, I would have asked if there was another option in working with their office. Perhaps there is someone I can see that could address my pain issues before the 6 weeks away appointment. Research, resourcefulness, patience all necessary here.
Instead I said I can’t wait that long, I should have asked the question- How far out are you scheduling before trying to schedule. And I hung up. AND, it was last Friday- the beginning of Presidents Weekend!
So, the ENTIRE weekend, I wax contemplating my poor decision and regretting it and wishing I could immediately fix it. I got through the weekend and decided; in spite of my mistake, the best move I can make is to persist in my decision to see that doctor. I needed to try and work something out with them. But I needed to wait until Tuesday:(
Still I persisted and I pulled some resources, to try and help me get an appointment that would be sooner.
I spoke up and complained ALOT about my symptoms! That’s not something I really like doing. But it’s necessary.
You have to tell people what is going on. Otherwise they won’t know how to help you. I have been to my internist a few times to get some help in the interim. That’s not completely effective. It is taking steps in the right direction. It’s a horrible feeling being in daily pain and not being able to sleep.
It’s even worse when you feel like nothing and no one can help you. So, when I feel that way I do research, problem solve and identify new steps I can take to help myself.
So getting back to the spine specialist. I called back on Tuesday and left a groveling voicemail as I realized, I needed to see this doctor. I heard nothing from them until I called back on Thursday.
On Thursday, when the receptionist answered, I actually used assertiveness. I spoke calmly, but firmly stating that I had called 2 days ago and left a message for 2 separate doctors on 2 different voicemails and have not received a call back. I said, I need to speak to a live person. How can I do that. Guess what! I got a real person. She remembered me from the previous week and was very helpful and told me what I needed to do (send radiology reports) to start the appointment process.
Yes, appointment process, the previous week, I was so angry and frustrated and thought the system was ridiculous. I thought I could change it (even if it was just me they changed it for).
The system should be different. Trying to change it when you are The one suffering is another BIG mistake. Listen to the offices and play by their when you need to. In these situations, fighting the system is only hurting you (or me).
So, Friday I got a call back about making an appointment! I have an appointment with a pain management specialist in the practice rather than the surgeon. Last week, I was opposed to this, thinking that I definitely need surgery. I didn’t want to waste time or energy trying something that won’t work only to delay the inevitable.
However, I didn’t consider the possibility that it may work. I hope it works. Why the he’ll would I ever want to have surgery, if something less involved and/or invasive can knock out the pain.
These are the lessons I have learned this week. I know I am going to need these characteristics ALOT as I go forward.

Who Can I Bark At!?!

Here I am sitting on the couch watching TV with my beloved Lori. All of a sudden, a commercial featuring animals I need to chase out of our home appear on the screen. Who makes these commercials and why do they insist upon interrupting my serenity and inner sanctum!?! How can we get commercial producers to cease and desist in using animals, animal noises or cartoon animals? I need to have my couch QT without any unpleasant interruptions. Ruff said.

My Letter To Arthritis Today

I want to write directly to you, Arthritis Today about your choice to print Miss Michigan’s story on Why JA is a Gift (it appeared in the January 2012 edition). This magazine is supposed to be a magazine FOR people WITH arthritis, to inform, support, guide and inspire.

However, that article made light of a very real, very debiliting, relentless chronic illness. I read it and felt like I was stabbed in the chest by someone who is supposed to my strongest advocate.

Did you ever consider the feelings and physical condition of your readers? How would reading an article such as that make a child suffering with JA feel any better? I found it extremely hurtful. In fact, it seemed to mock the real illness.  The very illness that is the Number 1 cause of disability in the United States.

This country loves to highlight heroes. You consider heroes people who face and  overcome adversity with a great attitude and never give up mentality. 

Sometimes, and especially in the case of Arthritis, there is just too much to overcome. It doesn’t mean that the people who continue to suffer lack a positive outlook or the ability to overcome adversity. It doesn’t mean we don’t possess  the willingness and drive to try.

We are simply affected by an illness that is relentless. We can get treatment and it may help or it may not. If it does help, it may only help for a while. Joint stiffness, pain, mobility limitations, and joint destuction are always threatening to mess with our quality of life. When mobility continues to decline no matter how hard we try and fight it; all we have left is our personality, humor and mental toughness. 

The bottom line is, this illness is much more serious and debilitating than was portrayed in that article. In fact, that article was so far into fantasy, it should have never appeared in Arthritis Today. It’s a slap in the face to people who really need advocates and support.

The gift you just gave me was putting me down as I continue (31 years later) to struggle with JRA. All you ended up doing was putting down arthritis sufferers and making arthritis look like a made up disease. 

 http://www.arthritistoday.org/community/people-profiles/miss-michigan-elizabeth-wertenberger-2.php

The above link is the story that I HAD to comment on.

Giving me something to bitch about

http://www.arthritistoday.org/community/people-profiles/miss-michigan-elizabeth-wertenberger.php

The above article slapped me in the face when I was in the wating area in a spine specialists office. I still feel like I was just stabbed in the chest just looking at the link. Elizabeth Wertenberger (Miss Michigan) apparently believes that Juvenile Arthritis is a gift. What the hell kind of Juvenile Arthritis does/did she have!?! And, Why the hell would the magazine published by the Arthritis Foundation (Arthritis Today) include such an insulting and ridiculous article in their magazine?!? I have no bloody idea!

Let me tell you something, Elizabether Wertenberger and Arthritis Today: There is no way to make a chronic illness into a good thing. And I can completely assure you that it in fact NO GIFT! Are you completely deranged!!!!

Besides the fact that I have this illness and still suffer from it and it’s destructive wrath. Arthritis is the NUMBER 1 cause of disability in the United States! That’s a fact you, Arthritis Foundation, love to tout when you are on your FUNDRAISING missions. The number 1 cause of disability, yet you are highlighting a story in your magazine on how this 22 year old Miss Michigan was dancing BALLET with undiagnosed JA and thank goodness she did or she would have really been disabled.

Am I in an alternate universe?

Let me tell you about JRA. I HAVE Juvenile Rheumatoid Arthritis. I was dagnosed in 1980 and my doctors had no trouble whatsoever diagnosing me. You know why Elizabeth Wertenberger! I couldn’t FREAKIN walk! I was 7 years old. I was not sitting on the couch eating potato chips. Before I was a normal, active kid who played sports with her peers, did gymnastics, danced and sang.

Guess what! I wouldn’t have been able to continue dancing. Your story makes absolutely no sense to the person who suffers from arthritis. I was hospitalized and diagnosed within a few weeks with Juvenile Rheumaoid Arthritis from My jaw to my toes and had to stay home from school and have home tutoring. And that was just the beginning.

Let’s fast forward 31 years, Arthritis Today and Elizabeth Wertenberger. Now, I sit home collecting disability benefits. By the time I had graduated HS, I couldn’t get up from chairs without help or climb stairs and had tremendous difficulty walking. So, I had 4 joints replacements in a 4 week period. Did you have so much destruction in your joints that you needed surgery? No. I didn’t think so. That wasn’t the only surgery I had. Overall I have had about 20 surgeries in 20 years with more on the way.

But, having those first round of joint replacements gave me relief from stiffness and pain and the mobility I needed to have some independence and freedom in my life. I went away to college and earned a BA. I went to graduate school annd earned an MS. I worked.

I didn’t do anything in life to keep this illness around. But, it is a nasty, debilitating, destructive, unforgiving chronic illness that never gives up. The only gifts it really gives are more pain, more stiffness, more disability, more stress, and more problems. Elizabeth Wertenberger (Miss Michigan): you have no business commenting on the world of arthritis. And Arthritis Today, you should be utterly ashamed of yourselves for printing such absolute trash!!!

Ask a real person who has lived with JRA and they will tell you, we are and would be happy go lucky, hard working, optimistic people too. Sometimes we even are in spite of it all. We are just trying to take what comes and deal with it the best we can. We don’t need to see articles like that to make us feel worse than we already do.

The end.

Shout Out!

I want to send a quick SHOUT OUT to Jimmy Fallon for his special guest star appearance in my dream last night! Oddly enough, he was the only one who could write me a prescription for an MRI. He was happy to do it too! Thank you, Jimmy!

Mad at facebook

I am mad at Facebook and now it’s affecting my desire to network, socially. Facebook has baffled me by sending me a warning and temporarily interrupting my access to their site. Why did I get a warning? I sent out a friend request. I really sent out many friend requests. Isn’t facebook always taunting us with their friend suggestions and strongly encouraging us to make friends on their site!?! So, I have been.

Maybe I have gotten a little lazy about including a message with my request. So what! I don’t get messages from people who send me requests. Anyway, someone I sent to friend request to (at the relentless taunting of Facebook) chose the “don’t know this person” option. Apparently, if someone you sent a request to does that, as the sender you get a FB WARNING. The warning lets you know that it is against FB policy to send out requests to people you don’t know. It also says that if you continue to do this (and they get more feedback like that), you can have your account taken away!!!! Did you guys know this? I didn’t. And, I find it odd for a social networking site to have such a rule.

Of course, I realize that there are nutty stalker crazy people out there. But, no one HAS TO accept a friend request and in fact, you can BLOCK anybody from having access to you and your account. I have friends on FB that I made through games who I have never met. I value their friendship and am glad to have them in my online life. I simply wanted to expand my enterprise.

At the very least, FB should send a memo and ask what the intent was. My personality, my picture, my voice are all shared through FB. They could have at least “checked me out’ before jumping to any WARNINGS and marring my account standing. They don’t even let the sender know who the request was sent to, how many friends you may have in common….they don’t let you explain, represent or defend yourself. I have since cancelled all my outstanding friend requests and will be quite cautious from now on. This all makes using FB kind of pointless in my mnd right now.

Facebook: I love you, but I am so mad at you right now!