Anniversary

Today is the first anniversary of my blog and this is my 309th entry. Amazing that I had enough to talk about to write over 300 posts! The last year has been a real growing experience. Yes, it was definitely filled with challenges and hard times, but it's also been filled with joy. The birth of another grand baby, my first year of marriage (although we sure didn't think it would be like it was). We weathered everything just fine. That's what happens when you marry your very best friend. No matter what happens your best friend is always there for you.

I gave some serious thought to ending my blog today. However, with encouragement from hubby, family and friends my blog will continue to go on, at least for a little while.

Thank you for all your comments and input. I've enjoyed each of your blogs and learned from them.

In honor of my blogs anniversary I will be changing my blogs look (I don't line this one). So tomorrow I'll start fresh.

There is more to life ......

than MS. So after this sentence I will not mention MS or it's symptoms. Gonna be tough but I'm going to try and see if it's even possible.

The weather here for the past month has been unbearable. 90+ degree weather almost everyday. As we live in the mountains at 4000 feet, that's really hot for us. Although, there are those that love the heat. Like the kids running the lemonade stand over the weekend. LOL

We're heading out for the family reunion on Sunday. I'm really looking forward to it, even though this is only the third one I will have attended. (It's my husbands family and even though we were together several years before we got engaged the rule is "No ring, not attending". I think it's actually a pretty neat rule. That way it really IS a FAMILY reunion and you don't have to look at the pictures in 10 years and try to remember the name of the bimbo Uncle Frank brought that year (I apologize to all the Uncle Franks out there).

Speaking of family. I've been incredibly lucky with mine. My sister is simply da bomb. Of course next week we could be fighting like two wet cats with our poor mother trying to intervene like she did when I was 9 and my sister was two, eating the feet off my Barbies (YES YOU REALLY DID THAT). Gee, imagine what those Barbies would be worth today.

I also have an awesome brother that I don't believe I have ever mentioned in a blog. (There are three of us, with me being oldest). Being the middle child he was always (and still is) the peace maker. Of course, even as a child he was wise enough NOT to get in the middle of two sisters fighting. Now that I think about it, he being the middle child between two GIRLS may be the reason he's a man of few words today. He could never get a word in edge wise when he was a kid. My brother and I got along pretty well growing up. Although I do remember us going around a time or two. Because we were closer in age we tended to just punch each other. Then my mother would spank us because we whomped each other, and when I say whomped I mean the bloody nose type of serious whomping. (Secretly, it was worth it though).

I'm probably one of the few people I know my age (47) whose parents are both still living AND still married. TO EACH OTHER. I don't know how they did it, but I'm awfully glad that they did.

Are there any other crafters out there? I use the Cricut. I've pretty well limited myself to cards for now. There were several months when I didn't touch my machine or do any crafting. My husband made the comment that he was glad to see me back at it over the weekend. Now I just have to come up with some creative ideas. Anybody got any?

Well, hot...ummm....diggidy. I do believe I did an entire entry without ONCE mentioning........

Blah, Blah, Blah

Do you ever just get sick of it all? Sick of the shots, the pills, the muscle spasms, the depressive episodes, losing your balance, falling, the MS "hug", the insomnia, I could go on and on listing what we experience with MS.

Today is my "Sick of it all Day". Today I'm basking,....make that rolling in frustration. What started it? It started yesterday when the ramp for the van fell through. (Because I don't have the 15,000 they want. Yep you read it right, 15,000). That ramp meant independence for me. I was so excited. Then, like a kid putting his coat on, getting ready to get in the car to go to Disneyland he's told they aren't going, I was crushed. I cried. However, unlike a child I didn't have a temper tantrum, go to my room and slam the door. Perhaps if I did I would feel better today.

Don't get me wrong. I am exceedingly aware of the blessings I have. It's just that a prison is a prison, even if it's a beautiful one. MS sentenced me to life without the possibility of parole and I don't even know what crime I committed. I'm only allowed out when accompanied by someone because I can't put the manual chair in the van by myself. In other words, I can't go ANYWHERE alone. It's been this way for over a year now. JUST a year. When you look at the big picture I have many years left to go, God willing. Many years left to go of no independence and being DEPENDANT on others. Perfect.

Of course, folks try to cheer you up. "It could be worse they say". What my response is right now..blah, blah blah. Maybe like the kid who got Disneyland pulled out from beneath him, I'll just go slam a door now. Wait....how do you slam a door in a wheelchair?

Back to myself......

As I sit here finishing up my coffee and scone (thank you hubby), I'm prioritizing my tasks for the day. Calling about having the ramp installed this week.....and that's about it other than the "unexpected" things that pop up.

I find myself very relaxed toady. The pain in the left leg is there, but it always is, so that's nothing new. I have a lot of fatigue today which I'm going to fight this morning. For the first time in MONTHS I feel like crafting. Perhaps THAT is the true sign that I am emerging like a butterfly from that dark cloud that threatened to consume me for so long.

Besides photography I love making cards. I think it adds a personal touch that people really appreciate and the process of making the cards help me completely focus on something else besides the MS.

I'm finally feeling, that despite everything, I'm getting back to my "old" self. I know that blogging was an important part of that process. Not to mention the support of family and friends....and all of you out there in cyberville. So, thank you. I couldn't have done it without each and every one of you. I hope I'm as supportive of you as you are me.

We decided to have a wheelchair ramp put in the van to give me more independence. YEAH! It's going to be an electric ramp so I can put it up or down ALONE! Isn't that simply awesome!

I've not been able to get out of the house alone since I ended up in the chair. I can get the manual chair out of the van by myself, but I couldn't lift it to get it back in. I simply don't have the arm strength.

The new chair should be here in the next two weeks or so. Another exciting thing to look forward to. Who would have thought I've ever look forward to being in a wheelchair? However, this is an electric wheelchair which will make getting around a lot easier! I'll post pictures when it arrives.


BTW how the heck do you all post more than one picture an entry? I'm sure it's simple but I can't figure it out.

Cooling bill reduction

We have had incredible heat for the past few weeks. Thankfully, we don't have to deal with the humidity.

One think I've learned over the past few weeks (after receiving a 300.00 electric bill)!! Is that if you have MS the utility company will lower your tier rate (the rate they charge you). All you have to do is call them and they will send you a special form. You fill one portion out then your MD fill out the other. Make sure you do it, even if your cooling bill seems reasonable. It will be even MORE reasonable once your on this plan.

Hope your all managing to stay cool!

Ms continues......

I haven't posted in a few days for two reasons. First, I couldn't remember my password! Then, they sent the password to my email address and I couldn't remember that one either. I thought what the heck? Well, those aren't EXACTLY the words I was thinking, but you get the idea. So it wasn't really surprising when more MS flare up symptoms started. My left leg has been a real pain. Literally. It doesn't want to work and half the time it feels like it's on fire. There has been no improvement in my eyes, the near vision is still pretty bad. Reading is slow and challenging, and something I can't do for long. Another symptom that has popped up in exhaustion. My husband has found me several times asleep at the keyboard of the computer. Fingers still on the keys. I didn't do that when I was working 60 hour work weeks so it's very frustrating to me to be this way now. I won't even talk about the falls and new bruises.

Just another exacerbation. One I hope doesn't get any worse. I refuse to call my Neurologist. What is he going to do? I'm still taking steroids. Have been since April.

All we have is hope.

I chose this topic after reading another bloggers entry from today. She had a particularly brutal Doctors appointment. Not because she heard much that was really new to her, but because she was forced to really start accepting her disease. She had managed to put a little bit of a buffer between herself and the true acceptance that SHE has MS.

We all did that. Some manage to do it for years. Perfectly natural, perfectly normal. There are many days that I wish I could go back in time to when I thought they were wrong, or while I had MS I had a "mild" case and it would never be more than an inconvenience.

Apparently she and I share more than just an MS diagnosis. We also appear to be in that 20% of MSers that continue to progress. Lucky us. You would think that with odds like that we could manage to do fairly well in Vegas, but I digress.

All I can say to her is this: Be angry, you have every right to be, cry, curse, yell and scream, but, NEVER allow someone to take your hope from you. Often that's all I've had that has kept me going. The hope that tomorrow will be a little better than today, that someday they WILL find not only the cause, but the cure as well. When it comes right down to it we have NO control over our disease. NONE. What we do have control over is how we react to it, treat it and accept it. None of them very easy things to do, especially if you don't have hope.

Know that you have a large circle of faceless support all around the world pulling for you, saying prayers for you, even as we ourselves battle MS. Hang in there. Tomorrow WILL be a better day.

Just anothe MS day

I haven't blogged in a few days, because once again MS has raised it's ugly head. My near vision has really gotten worse which makes typing very difficult. My fatigue level is incredible. TWF( Train Wreck Fatigue) is back and I haven't experienced it in awhile. I had forgotten how quickly you go from being wide awake to fighting to keep your eyes open. I can't tell you how many times in the past week my husband has found me sound asleep, fingers on my keyboard as I attempted to blog.

On the good news front I FINALLY have my appointment at UCLA. Hopefully, I will meet all the criteria for the Touch Program and be able to start on the Tysabri. I won't see my neurologist again until after UCLA. I'm still on steroids. Looks like I will be for another 6 months, unless UCLA takes me off. If I stay on for the entire 6 weeks it will mean that I have spent a total of four and a half months straight on steroids. Good golly. I feel so bloated and my face is so round. It will take forever to get the weight off. Oh well, maybe I'm just destined to be a "cuddly" grandma!

David can still beat Goliath

I had the best day today. After the insurance company denying my power wheel chair and deciding to fight the decision. I received a phone call that the insurance company authorized my power wheelchair and is paying 100% of it. So I went to National Mobility and spent about an hour or so trying out the motorized chairs. (I felt like a kid in an amusement park). I also learned A LOT about being in a chair that they didn't even tell me in rehab. First rule: NO JEANS. Apparently the denim material prevents your skin from moving when your sitting. Not good. Creates the perfect scenario for decubitus ulcers to form. (Not on my butt thank you very much).

I saw my Neurologist after I played with the wheelchairs. He says he's keeping my on the steroids another 6 weeks. I am so bloated with being on them since April. I don't even recognize myself when I look in the mirror. At least I know I WILL be off of them soon. He also took me off the Rebif (Thank God) and put me on Copaxone. The side effects of the Rebif are just too brutal for me.

All in all in was a great day all around.

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!