When did happiness become such work?

Why is it that we've never really happy? I don't mean the HA-HA kind of happy that comes with enjoying a good time with friends. I'm talking about the kind of happy that you feel in the marrow of your bones on a constant basis. The happy that brings complete and total contentment.

It seems that we've all become so busy either trying to keep up with the "Jones", climbing that career ladder, or making sure that someone else in our life is happy that we really forget what "happy" means to and for us.

Before MS started misbehaving and deciding IT was going to try to control my life, I was one busy lady. I had just married the man I waited over 43 years to find. I had a job that....well, while it paid very well (allowing me to keep up with the Jone's), it also consumed an average of 60 hours of my life each week. I was very active in my church and was an expert at juggling my time and energy to make everyone happy.

Then, due to the stress of my ears and a fall, (just 6 weeks after I got married) MS found the opportunity to step up and step in. Boy did it ever. I suddenly found myself completely unable to work and my life was (and still is) filled with MD appointments, constant pain and therapy. Instead of being an expert at juggling my time and energy to maintain a job, a home and keep everyone happy, I now spend my time wishing I HAD the energy to juggle everything. Now I fight with insurance companies as well as my own emotions, frustrations and pain. Fortunately, while I've had to drastically change habits, I haven't lost my home or a vehicle. However, what I have lost was worth so much more. Independence, running, heck walking for that matter. I lost the ability to come and go as I please. I even lost the ability to clean my own home. I can't remember what it was like to have a day when my back didn't hurt.


Things I took completely for granted. Always assuming I'd wake up every morning secure in the knowledge that as long as I did my job, it would be there. That I would get out of bed and be able to walk and run. That a girlfriend and I could spontaneously plan to meet for lunch (on one of the rare days I wasn't doing something else), that somehow in the course of my busy day I'd figure out a way to keep everyone happy.

Looking back now I realize that I HAD everything to make me happy. A great relationship ( I thank God everyday for the fact I still have that relationship), friends, family and the ability to walk and run. A job that more than paid the bills. Yet, I always felt I had to do more, BE more. I new that if I just kept chasing that brass ring one day I'd catch it. THEN I'd REALLY be happy.

I read and hear people saying the same things I said, "if only I made more money", "if only I had a nicer car, if only I was thinner, if only I could have my boobs done". Is that really what we as a society think happiness is all about. That THAT is what happiness really is? When did happiness become such work?

Now, through the experiences I've had over the last 14 months, I've learned that my own personal happiness is simply based on this. Time. It's time spent with my husband, doing nothing. It's time spent laughing with a girlfriend over a cup of coffee. The time to enjoy the smiles of grand babies and the laughter of older grandchildren as they spend their time with me. It's time spent with the family and friends who love me. That's it. Nothing else matters. THAT is what being happy really is. I had the brass ring the entire time .

What happened to caring?

As I sit in the passenger seat as my husband drives the 101 in Los Angeles (yes isn't technology wonderful. I just pull the 'ol lap top out, plug the broad band card in and away I type), watching folks be rude and obnoxious as they drive. My thoughts turn to wondering exactly when we stopped caring about and for each other as human beings. When did it become so important to be first in the freeway lane that it was worth cutting the person off in front of you and risking your life causing an accident to do so?

While it's true that no one promised any of us life would be easy, or fair, why do some insist on making it that much more difficult by the way they treat their fellow man? I read blogs of fellow MSers that are going through such hard times. Isn't it enough that we're dealing with this disease that controls our lives on it's own whim of which we have no control? Why then do we have to fight with insurance companies and cold, unfeeling physicians who don't seem to really give a crap. As a medical professional myself, some of the things I read (and have experienced myself) makes me absolutely ashamed to call the profession my own. Heck, sometimes as I watch the evening news I'm ashamed to call myself a member of the human race.

So, at the very least, why do we have to fight insurance companies for treatment? Heck, why do we even have to wait so long to even receive the oh so carefully worded notice of their denial? I have now been waiting three weeks, almost four to wait to see if I'm going to receive authorization to go to UCLA. Of course, it may be denied. After all, even though there is not a single physician (supposedly) in the entire Bakersfield region allowed to write the prescription for Tysabri, (hence I HAVE to be evaluated by the UCLA MD's to get the prescription), UCLA is "out of network" and I have to be granted special permission. Even though my Neurologist feels that Tysarbri may be my last shot at stopping the progression of my MS and heck, maybe even get some function back.

So, I wait, and my MS progresses. It's progressed so much over the last month that my physiatrist told me last week that a leg brace on my left leg will no longer be of any help to me.

So, I wait to see if some unfeeling, uncaring, nameless, faceless person sitting behind a desk, who doesn't give a crap about me or my situation, will decide to bless me with special permission to go to UCLA. THEN, IF UCLA agrees I need Tysabri, I'll sit and wait to see if the same nameless, faceless person will ALLOW me to have the treatment.

There is something VERY wrong with this process. Oh to go back to the days of real "case management". When patients with chronic diseases where assigned a dedicated nurse to follow each of them by the insurance company. A nurse who had the authority to authorize services and who VISITED the patients. Got to know them and what they really needed. I can't even get safety rails authorized.

Oh to go back to the day when folks used their turn signals and the person in the next lane waved them over.

ARGH

This is the THIRD flipping time I've written a blog pushed publish and got an error code...with the blog GONE. ARGH I'll try again LATER.

Hope you are all well!

294th Post....and I still ramble

Amazing this is my 294th post and it hasn't been quite a year yet since I began this blog. Blogging for me has been an absolutely amazing experience. I started my blog never intending to share it with anyone else. It was going to be a private form of "therapy'. A place where I could rant and rave with no one to hear me when I lost my mind. 4 years after diagnosis and MS still strikes terror in my head and my heart.

Thankfully, my blog WAS discovered and I became a member of a very select group. Those who have MS and aren't afraid to talk about it. To be honest about it and to "put it all out there" for the world to see. Some of it isn't pretty. It's hard to read about a fellow blogger who is going through a rough time because of the MS. Not only because I hate to hear of anyone suffering, but also because I always wonder....will I be the next one that happens too? I'm sure when I was blogging about my hospitalization and rehab that very thought crossed the minds of the MSers that follow my blog.

We all wonder. How effected by the MS will I be? Will I be one of the "lucky" one's where MS is merely an "inconvenience" in my life? Something I take a shot for, but other than that have no symptoms that interfere with our life. Will I be able to work, work out at the gym, and travel?

Or, we will be one of the MSers that has a really tough time. Steroid treatments numerous times through out the year, painful neuropathy, depression, insomnia, hospitalization, rehab and a gradual loss of mobility until your wheelchair dependant.

It's a total crap shoot.

Despite the path our journey with MS takes on on, each of us was really blessed when we found our circle of online MSers. None of us knows where our journey with MS will take us. All we can do is pray for the best and rely on those who are there to lend support. Those who care, even if it's someone you may never meet in person.

With the 4th of July celebrations now behind us, it's time to settle in to the heat of summer. We purchased a window air conditioner for the master bedroom yesterday. Even though we have central air, it just doesn't cool that area off enough. Last night was the first night in months that I I didn't wake up with my hair sweat drenched. YEAH!

Next week will be a busy week. Between PT, seeing the Physiatrist and Marks appointment's. My focus will be on staying cool. One more week on the steroid dose I'm on, then I drop down to only 19 mg a day. Another YEAH. I can't wait until the steroids are done. Then the hard work of getting this weight of begins.

I intend to start a regime of using resistance bands for the upper body. Haven't figured out yet what to do about the lower body with all it's limitations, but I'll talk to my physical therapist and see what he suggests.

Yesterday was actually a pretty good day. I did a fair share of "wall and furniture" walking. No falls I'm VERY pleased to report. Of course, I overdid and am paying for it today with my balance and decreased energy, but it was worth it. As I wrote a few entries back in the letter to the caregivers. It's up to me to decided to push knowing there will be consequences. To me, yesterday's pushing was worth it.

My brother and his wife are coming over today for lunch and a visit. It will be nice as I haven't seem them in quite some time.

Everyone stay cool....enjoy the rest of your weekend and take one day at a time!

Insurance Companies suck

It is 4:30 in the morning here in sunny California ( well at least it will be sunny in a few hours) and I've already been up an hour. I woke up to terrible joint pain. Last night was Rebif night and the side effects have decided to make themselves known. I'm not one to take any extra medication (they have me on so much now I don't want to take anything else) but i had to take my prn prescription pain medication. I'm in that much pain.

We're still waiting for the da*# insurance company to approve me going to UCLA for the Tysabri evaluation. It's already been two weeks. I wish they would get off their collective asses and approve it. Can't wait till Obama Bs's his way into a National Health Care System. The government can't manage anything they do now except line their own pockets. I have to wait this long with a private Blue Shield Plan, can't wait to see how long I'd wait under a National plan.

However, this isn't a political blog, so I'll try to limit my complaining to just my insurance company and other world events. Like Michael Jackson. I've HEARD ENOUGH. Bury the man and move on for Pete's sake. I'm sick of every news station still covering his death as if he was the President or the Queen for goodness sake. Yikes am I on a roll or what this morning?!

Back to rationality and the insurance issue. Fortunately, because I ended up in the hospital and rehab after my last exacerbation I was placed in the "high risk" program that Blue Shield has. This means I get a call every week from a nurse to discuss any "issues". I'm going to call her this morning and see if she can help speed these authorizations through. Now that my husband and I have decided that Tysarbi is the way to go as far as treatment, I just want to start it and get off this bloody Rebif.

I decrease my steroid dose to 20 mg a day today. Yeah....it's only taken a little over two months to reach that dose. Two weeks on 20 then I drop to 10. I wonder how long it will be before the weight starts coming off? Anyone want to start a poll? Tara? LOL

Well, that's enough for now........everyone have a great day and stay cool!