Tuesday, December 01, 2009


I've always wondered why MS flares up with weather changes. Is it changes in the barometric pressure? Coincidence? Too hot and your current symptoms get worse and when the weather changes and brings rain or cold flare-ups seem to abound.

Train wreck fatigue has come for a visit. My fault. I pushed too hard to keep up with family over Thanksgiving. My own stupidity combined with the long drive was enough to push my "normal" fatigue level through the roof. As a result I've spent the past two days in bed.

I start physical theraphy tomorrow. I requested my physician get the authorization for me prior to the holiday. I'm hoping that PT will help slow down the atrophy that's been occurring in my left leg. Also hoping that maybe it will help me build up my stamina. I figure it will either help me or knock me on my keister.

Monday, November 30, 2009

Back from Thanksgiving

Back in town after a wonderful Thanksgiving with family in a beautiful setting with gorgeous weather. Who could ask for more? We had a wonderful Thanksgiving catching up with family. Mark got a few rounds of golf in and I got to catch up with his sisters and the rest of the family. The weather was perfect: high 70's and low 80's for the 10 days we were gone. (Of course we also missed the first snow of the season at home). While it was wonderful to be away from the stress of daily living here, I was glad to be back. I missed my animals and routine.
As usual I pushed myself too hard and did too much while I was gone and while I should be resting now, there is simply too much to be done before Christmas. I can't believe Christmas is just a few weeks away. We'll be traveling to see family and two of the grandkids and I can't even begin to say how excited I am about the trip. Although I'm not so sure about the drive. Thanksgiving really wiped me out and the drive was really minimal. The Christmas drive will be days long. We'll have to see as we get closer if I'll be up to that long a drive.

I see my neurologist next week and boy do I have some things to talk to him about. I've started having terrible site reactions to my injection and my legs almost constantly feel like I've spread a heavy layer of Icy Hot on them. Other than that the MS has been behaving itself. I just have to watch how hard I push myself, but that's me NOT listening to my body and paying for the results.

Monday, November 23, 2009

Time to think about blessings.....and be thankful.

I didn't sleep well last night. Not unexpected considering I'm alone in a hotel. However, as usual when I can't sleep my brain moves constantly from thought to thought until something snags my thoughts.

It's Thanksgiving week here in America. A time when families reunite, eat too much and watch 4 days of constant football. During this time we're all reminded of the things in life that we're thankful for. Perhaps things and/or people that we take for granted during the rest of the year. A time when we're supposed to slow down the crazy pace of our lives, take a deep breath and really appreciate all the blessing that we have.

Once again this year MS has not been kind. However, BECAUSE of MS I now have some pretty special people in my life. People that I know with absolute certaintyI would not know if I did not have MS. Some are bloggers like Herrad, Webster, BlindBeard, Julie, Jen, Bill, Lisa and so many others. Some have become friends though our MS support group like Carol, Dale and Sandy. In this regard MS has been a blessing because of the people it brought into my life.

My husband is my biggest blessing. I can't imagine my life without him. He is the half that makes me whole. His encouragement is the reason I never give up. His love inspires me to be the person HE see's.

My family. What can you say about the blessings family brings. Even when they make you crazy (and they do), you always know you are loved. At least I do. MS has definately brought my sister and I closer. There is a big age difference between my sister and I and due to life's circumstances and miles through the years we really never got to know one another. MS changed that. Now, I consider my sister one of my closest friends. For that I am truly thankful. For my husbands familly, who have accepted and welcomed me with open arms. Whose support has been strong and unwavering, I am thankful.

My church. My church family is absolutely wonderful. I have become very close to several members, again through my MS. When MS got tough, they got tougher. The prayer warriors prayed me though MS. Father Clare uplifted me and helped keep my faith focused when it wanted to waiver. I have said this before and I'll say it again. I can't imagine how folks struggle through things without a strong faith and Christian support. It's only through the Lord that I am strong. For that I am truly blessed.

So this Thanksgiving, when you are with your family and friends, take a moment to look at the faces of the people that love you, support you and make you crazy. Think of those who can't be with you this year. Say a silent prayer of Thanksgiving. Take that moment to thank God for all the wonderful Blessings he has brought into your life.

Happy Thanksgiving everyone.

Tuesday, November 17, 2009

Here we go again......

Here I go again. I'm doing my best Katherine Hepburn imitation without even trying and my skin is so hypersensitive it feels like I've rubbed an entire container of Icy Hot on my legs. Just in time for Thanksgiving. I absolutely, positively am NOT calling my Neurologist because I am not doing steroids. I simply refuse to be sick over the holidays! For that matter I refeuse to have an exacerbation right now either. Mind over MS, Mind over MS, Mind over MS!!!!

Sunday, November 15, 2009

Trip to the ER

Ahhh...the opportunity to spend a nice quiet Sunday. Go the church then home to relax. NOT! I took a tumble this morning (My balance is always worse in the morning. Not that it's really good any time), and injured my right thumb and wrist. I called my MD and she met me at her office. (Imagine a Doctor that meats you on a Sunday in their office)! She sent me over to the ER for xray's. She will get the report tomorrow. I don't think the wrist is broken but the thumb hurst like the blazes. My hand is a bit swollen as well. Go figure.
The oys of MS!

Tuesday, November 10, 2009

I'm baack with a question for you.

Yes, I know. As several of you have pointed out through email, I dropped off the radar for a bit. I've had some stressfull life "things" going on and withdrew to deal with them for awhile. My world has now "righted" itself back on it's axis and for now, all is well.

I'm, like the rest of you, starting to get busy with the holidays. My shopping is just about completed (thanks to the internet) and I've managed to do it without exhausting myself. The challenge is always how to manage off the holiday stress. Even when it's something you enjoy the stress and MS can rear up and bite you on the hind end.

So, my question is this. How are you going to manage the stress of the holidays this year?

Monday, October 26, 2009

Happy Monday :0)

It's FINALLY here.....not Monday, heck that rolls around once a week. FALL is here to stay! Te days have been crisper and the nights down right cold. We actually put our winter quilt on the bed yesterday. After Fall dancing in and out all month, it's finally settled in for the season.

I'm just about finished with my grandaughters quilt. Just putting the decorative buttons on and it will be finished. Since I had extra material I went ahead and made a pillowcase to match the quilt. I'll snap a few pictures when it's all done.

Another week begins. This will be my last quiet week until the holidays. Seems I have multiple apppointments every week from now until the week before Thanksgiving, then they start all over again on November 30th. Have no idea how that happened. The only appointment I'm actually looking forward to is my opthamologist. I hope my Optic Neuritis is gone. My eyes changed so much after the bout I had in April that I need a new pair of glasses. We held off for 6 months to see if the vision would come back. It hadn't and then I had this last bout. Fortunately, the vision changes with this last bout reversed after a month. However, the changes since April have not. After almost 7 months doesn't look like the right eye will be improving. My opthamologist says the damage is done. Oh well, no use bemoaning things I can't change.

Everyone have a happy Monday and make the week a good one!!!

Wednesday, October 21, 2009

Can I get off now?

I often visualize MS as a Carousel. Not one of those brightly colored kiddie-go-rounds but a dark menacing one. One that you would see in your nightmares. The horses are all grey and dark, their mouths open in a mancing manor.  The riders are all stapped on. Unable to free themselves and get off the ride that spins out of control. Pretty dark huh? Well, so is MS at times. (However, believe it or not my mood is actuallly pretty good today. Reflective, but good).

Often the frustrations I feel related to MS are self induced. Mostly from trying to figure out how to second guess and "beat" MS. I so hate having a new numbness or other symptom pop up and wonder if this is the beginning of yet another exacerbation. Oh, to have a life where you didn't need to be focused on every wierd thing your body does and to be able to simple blame "old age" for everything that ailes you.

I'd like to remember what its like just to have ONE day when everyone in my life isn't worried about how I'm feeling or doing. When I wasn't worrried about how I'll be doing tomorrow. So, today I find myself asking the question. Can I get off the carousel just one time, for one day?

Monday, October 19, 2009


Finally! I can announce a project which I have been excited and very proud to be a part of. Several months ago I was chosen along with four other bloggers (Jen, Bill, Lisa and Julie) to blog and video blog for a new MS web site. It went live this morning. Please check it out: http://www.howifightms.info/  Let me know what you think!

Sunday, October 18, 2009

What happened to Fall???

There I was, enjoying the brisk days of early fall when suddenly Summer returned. Now I'm "enjoying" warm days in the upper 70's! (For me there is no such thing as "enjoying" temps above 70 as I'm incredibly heat intolerant).  Now, I'm back to only being outdoors in the early morning and during the evening. I feel like a vampire! Even my garden is confused. My Day Lilies are blooming again and even my husbands tomato plant has new blooms!

At least I have my blogging and crafts to keep my mind busy. I'm working on drawing the quilting design on my granddaughters quilt. I figure it will take me another day or two to finish that step. Then on to the quilting! I hope to have the entire blanket done before Thanksgiving. A lot depends on how my eyes do with the optic neuritis, but as always I'm optimistic!  Once this quilt is completed all my Christmas gifts are done. (phew).

Here's a thought. Maybe we'll just skip Fall this year and go straight into Winter?

Friday, October 16, 2009

Stress Relief

As promised above are pictures of my current quilting project.  The top picture is a work in progress I have all of the top pieced together.  Now I'll actually start on the quilting part.  I'm hoping to have it done in time to send off as a Christmas gift for my granddaughter, Rachel.  The bottom quilts is completed and is it the Christmas gift for my grandson, Kyler. Quilting, card makingand of course, photography  are my MS and life stress relievers. I think it's so important to have hobbies that you can do to help relieve your stress.  Although photography is the one thing that I can do even during an exacerbation.  When optic neuritis flares, I just put on autofocus.  Quilting and card making can be a challenge during an exacerbation.  If my hands don't work, I can't do the fine details of card making and about of optic neuritis pretty well takes care of the safety of sewing.

I went to see the Ophthalmologist and Neurologist on Wednesday. I still have optic neuritis in the right eye so instead of doing another round of IV steroids he put me on steroid eyedrops for the next month.  The neurologist has decided to take a wait and see stand we went from discussing Tysabri in April to "let's just monitor you and I'll see you in December". Geesh. Talk about going from one extreme to another. So, I"ll just use my machine, my eye drops and wait. Gotta love MS.

Tuesday, October 13, 2009

Thank God for animals

 I'm feeling a bit better today I was actually able to get some sleep last night.  It's amazing how quickly sleep deprivation makes us feel terrible.  The jitteriness from the steroids seems to be gone thank goodness.  I'm still dealing with some stomach upset but hopefully that will be gone tomorrow just in time for me to see the ophthalmologist and neurologist again.  I'm just hoping the ophthalmologist sees an improvement in the optic neuritis and they don't want me to do another round of steroids.  I just don't think I have it in me to do it again.  Not that quickly.  I have no idea why part of my post is underlined it doesn't mean anything and I don't remember putting it there but I can't figure out how to remove it either.  Well I'm off to enjoy a cup of tea before Bible study starts this afternoon.  Hope everyone has a great day.

Sunday, October 11, 2009

Post steroids.

I have to say that yesterday passed a complete blur. Thankfully the round of steroids is over so now I just have to rest and recover.  I had the usual gastroenteritis, jitteriness, and insomnia.  Now, I'm just completely exhausted and still have enough steroids in my system that I can't really sleep just catnap. My eye is a bit better it doesn't hurt as bad, so I'm hoping that the inflammation is going down and my vision will be better by Wednesday.

It's a beautiful day today.  The temperature is in the low 70s with a beautiful clear blue sky.  We took Petuni to the dog park this morning. I'll have to bring my camera next time.  It was fun watching her play with the other dogs. 

Well, I'm going to try and catnap and catch up on the sleep I've lost the last three days.  Hopefully I'll feel more human tomorrow.

Saturday, October 10, 2009

Steroids Dose two

Fortunately, for this dose it only took a home health nurse one stick to get the IV in.  But what is stick it was!  It's flushed well each time I flushed it so it should be good to infuse with in a few hours.  I hope.  It's now 1:47 AM hereand the steroids have me completely overstimulated.  No sleep for the weary.  At least I only have one dose left to go and then I'm done with this series.  I anticipate no sleep again tomorrow night, but it should improve each night after that.

One of the side effects is being completely unable to sit still for long, which has made running my programs a bit more challenging.  Fortunately, the doctor also has some programs for high issues.  So he faxed them over to me from Texas yesterday. Between my back, eye, and MS programs,  I'm now runningtwo programs every three hours.  At 40 minutes , a program it'sa long time for somebody overstimulated on steroids to have to sit still.  Then I turn around and do it again three hours after the last program has finished running.

 As I said on previous posts.  I've gotten to the point with steroids and exacerbations that the only thing I'll do steroids for any more is when my eyes are affected.  Steroids are just too hard for me personally to do it for any other reason.  Especially IV steroids.

 As my last dose is mere hours away  I can finally see the light at the end of the tunnel, this round.  I follow-up with both my neurologist and ophthalmologist next Wednesday.  I just pray the ophthalmologist sees an improvement in the optic neuritis.

Friday, October 09, 2009

Steroids Day Two....

Day two of steroids starts off with a bang.  I haven't had much sleep tonight, it is 4 AM and I'm up for the fifth or sixth time.  So, I went ahead to flush my IV and it's no good.  I'm waiting for several hours to call the home health nurse to come back and try to start another.  It took four sticks to get the one I had and now because that IV is no good they won't be able to try again to use that hand.  I'm going to try and drink a lot of fluids so hopefully she will have better luck later this morning getting a vein.

My poor cat has followed me around all night wishing I would settle down so she could curl up with me and go to sleep.  My husband slept in the guest room so that my wanderings and watching TV, wouldn't bother him.  Thank goodness for satellite TV.  At least, I watched the news all night.  Now I have more information floating around in my brain than I wanted.  Why can't they ever report anything good happening?

Thursday, October 08, 2009

Steroids Day One......

Before I start my entry I want to take the time to think all of you who sent positive comments and personal e-mails of support.  One great thing about the MS blogging community is the great support we give to one another.  Thank you.

I just finished my first dose of steroids.  I felt so bad for the home health nurse it took her forced to ask to get an IV in.  Then I had to call her back after she left because it started leaking.  Fortunately, the IV was still good.  She just had to tighten the connection.  Hopefully the IV will last through the infusions.  This time I'm only having three doses instead of the normal five, thank goodness. Because my first dose was this evening.  I anticipate no sleep tonight.  I'll be infusing my second dose in the morning, a bit close together, but it will get me on a morning infusion schedule.  I'm just so glad I've only doing three infusions, five are just too much for me.

The eyesight in my right eye is like looking through clouds, challenging to see through. Hopefully the steroid.  The inflammation and my vision will return back to normal soon. I'm trying to remain positive, as always.  However, this time, I feel like I've been kicked in the teeth.  I was just doing so well it's really discouraging to have an exacerbation. I'm sure you all can relate to that.

 I'll blog again tomorrow and let you all know how I'm doing through the infusions.

Wednesday, October 07, 2009

Is there any thing more frustrating

than trying to communicate with your physician? As I posted yesterday I went to see my primary care physician because I woke up with blurry vision.  She diagnosed optic neuritis on the right eye and possible optic neuritis on the left eye.  So, today I find out that the plan that my neurologist wants carried out is to have three days of IV steroids, and then go to USC. My primary care physician can't answer the question as to why my neurologist wants me to go to USC.
So, I called my neurologist's office to try and see  why he wants me to go to USC. Now I wait for a call back.  USC is at least three hours away from where I live.  I can't see traveling all the way there to see a specialist for something that I've been battling for the last few years. Because I have an  HMO everything has to be preapproved.  Hopefully I will be able to start before the weekend, but it may be Saturday before they get approval can schedule a home health nurse to come out.

I dread the steroids. They always make me so sick.  Not to mention that my blood sugar gets out of whack.  Tomorrow I go see my ophthalmologist.  I often wonder why I bother, as there isn't anything that he can specifically do for the optic neuritis.  You can probably tell that I am frustrated.  I had been doing so well the last month.  I was up walking with a cane and likely doing too much but it felt good.  Now my hands are dropping things, I can't button my shirt's, and my eyes are blurry.  Perfect.  Just perfect.

Well, I'll keep you posted with what happens next.  I just wish my journey with MS wasn't so rocky.

Tuesday, October 06, 2009

It strikes again.....

As I promised here is the result of my doctors appointment. I once again have optic neuritis in my right eye and possibly my left.  My primary care physician will be calling my neurologist and I called my ophthalmologist to change my appointment and move it forward.  I was supposed to see why ophthalmologist on the 15th now I'll see him Thursday.  My primary care physician said that once again.  I have earned a free ticket to steroids.

Needless to say I'm a bit frustrated and a little on the pissy side. It's ironic that just when things were going so well MS rears its ugly head to remind me that the monster simply sleeps.  So now I wait.  I anticipate I'll probably be getting a call between five and six with my instructions.

I'll keep you all posted.


Just when you think things are going really well.  Pow.

I woke up this morning blurry vision, and of course the thought of optic neuritis. Great. I already had an appointment scheduled for tomorrow with my primary care physician, but I called the office to get in to see her today.  So, I have an appointment at two o'clock this afternoon.

The worst exacerbation I ever had was this past April.  It started with going blind in my right eye.  That led to five days in the hospital and two weeks in rehab.  Not to mention full time in a chair.  Things have been going pretty well with my MS..  I'm out of the chair and using a cane full time.  While I've been battling with stamina and fatigue issues.  Everything else seemed to be going well. I started having problems with my hands not working well about three days ago. I couldn't button my shirt.  I was afraid the hands were the beginning of an exacerbation.  However, after spending four straight months on steroids,  I was just going to tough it out.  Being deaf I won't risk permanent damage to my eyes, so off I go to the doctors.

I'll blog tonight and let everyone know how the appointment went.

Saturday, October 03, 2009

Fall, quilting and time on my hands......

Using my machine faithfully and have been seeing some baby steps of progress and then a set back yesterday. I ended up having to use my chair as the combination of my balance and my energy level were shot. It's not like I don't have enough enforced down time having to sit still for 40 minutes every 3.5 hours throught the day. Plus sitting still time while I'm quilting. Of course, I can only sit before so long before I have to lay down due to my back.

I had labs drawn and my CBC was normal as was my thyroid so the fatigue is all MS related. My liver enzymes were also a bit elevated, not suprising due to the injection I was taking prior to the Copaxone. My glusose was also a bit high, not suprising for just ending 4 solid months of steroids with no break. All in all pretty expected. The fatigue is just kicking my hind end the past two weeks. Any one have any ideas?

I started working on a new quilt. A crazy log quilt using Christmas themed fabric. I hope to have the top piecing done in another week or so. As soon as I have it done I'll take a picture and post it here.

The weather here today is in the low 70's and supposed to drop again next week. (Yeah). Perfect weather for home made split pea soup. (That's on the menu for dinner tonight).

Hope everyone has a wonderful weekend!

Wednesday, September 30, 2009

Finally Fall...

It looks like summer is finally over and Fall has arrived. Today's high was only 64. Hopefully, the cooler temps will mean my MS symptoms will ease up and I'll stop having the awefull bouts of muscle spascity I've been experiencing the past few days. To me, the pain of the muscle spascity has been the worst part. I can deal with anything else except pain.

With the exception of the spascity and fatigue, I've noticed some pretty good improvement with the rest of my MS symptoms since I got my machine recalibrated. My balance is better and I don't seem to be having as much trouble getting words out.

I had a conversation with my primary care physician (I have a great PCP. She actually called out of the blue to check on me and in the past she has actually made a few house calls. Almost impossible to find MD's that do that here anymore), she thinks that the fatigue may indicate an issue with my thyroid so this morning I went and had some labs drawn. That's all I need. Another health issue. UGH. I won't worry about it though.

I've decided to start venturing out of my cave and mingling with other human folk. So, I signed up to take a machine quilting class. It's a one day class and it's something I've wanted to learn how to do. I've been hand quilting for years, but with the vison change that my last exacerbation brought it's too bloody hard to see to thread a needle! With machines that thread themselves, all I have to do is keep the seam straight as I'm piecing it together to sew. Seems a lot easier. The class will reveal if it actually is. Who know's maybe I'll actually decide to take up sewing again.

All in all, things are going pretty well. I just hope the cooling trend in the weather stays put and summer is really over!

Saturday, September 26, 2009

Believing and beating back.

I'm still using the machine several times a day. I actually went on a very short walk with my husband this evening just using a cane! Of course, the pace was that of a snail and it was only half a block, but it's a heck of an improvement.

Now, I'm sittting in the family room nursing very sore legs and savoring the victory! Makes me once again believe that this disease CAN be beat back. I hate this disease. I hate what it's done to me and my life. I hate what it's done to some of m fellow bloggers. However, I choose to turn all that emotion into internal strength. Strength that I am determined to use to fight this disease and help motivate others to do the same.

I believe that BELIEVING we can overcome this disease, beat it back, is the first step in really being able to do so.

Friday, September 25, 2009

Finally Friday

Yeah, Friday is here and the weekend is upon us. Time for relaxation and of course football! My favorite time of the year is fall when football season is here. I just wish the weather would start cooling down. I can't believe it's almost October and it's still in the upper 80's here.

I'm continuing to make small baby steps of progress everyday. My balance is better, so I'm able to get out of the chair at home and wander about on shakey legs using a cane. (I'm going to visit Tara's cane site. Mabe I can find something snazzy). My fatigue level is still high and stamina level low, so I'm in the chair if we're out and about. I'm using the machine every few hours so my down time between tretments tend to be busy. I try to squeeze as many tasks in those few hours as I can (getting my nails done, visiting friends etc.).

I'm looking forward to my Opthamologist and Neurology appointments next month. Tysabri is still on the table and my eyes definately changed after my exacerbation. As it's been almost 6 months, I think it's time for new glasses as it's not likely the sight I lost will be coming back. (Thank goodness for glasses).

Texas, once again, proved to be time and money well spent.

Monday, September 21, 2009

Home from Texas

Arrive home this morning at 1:00 am Texas time. Stayed up to run my programs and then crashed.  Didn't want to get out of bed this morning, but forced myself up so I could get the morning programs run. I'm on an every three hour run cycle. It takes about an hour and a half to run the programs, then I do it all over again three hours after the last program ends.

It's hard to see any difference today, but that's because the travel yesterday kicked my hind end. Prior to yesterday I was getting a large amount of relief from my back pain. It's not completely gone, nor will it be until the problem is fixed, but it's as huge improvement. My balance is also better. Although I will still require the chair, at least I feel a lot safer to wander about the house without doing a facer.

The insomnia and energy level issues will take a little more time. I'm planning on heading back to Corpus Christi in January for another re-calibration of my machine. Then, I will be staying for two weeks instead of just one.

If you are interested in learning more about the program go to http://paindefeat.com/ and look for the MS video testimonials.

Thursday, September 17, 2009

Texas Day Four

I didn't blog last night because I was just exhausted. Combined a day of treatments with a day of shopping. (The exhaustion was worth it though)! I had actually slept all night (yeah) the night before and was full of energy. I've started seeing improvements in both my balance and back pain. Both are still issues, but at least were moving in the right direction.

Last night on the other hand....yuck...I've been awake since 3:30. Makes only 4 hours of sleep for the night. On step forward, one step back. Insomnia is a tough bird to battle, so is MS for that matter.

The weather since we've been here has really been HOT. Temps in the upper 90's (99 yesterday) and humid. I gave up on putting makeup on. Just mascara. Why bother when the humidity has it gone if your outdoors more than 10 minutes? If feels like a sauna here. No rain or thunderstorms yet.  In fact the sky has been absolutley clear the entire time we've been here.

Well, I'm iff to grab something to eat. We're going to visit family of my girlfriends tonight so that should be fun.

Hope your all well!

Tuesday, September 15, 2009

Texas Day Three

Today was a day of big changes in the calibration of my machine, so it will be interesting to see what the changes will be tomorrow.  I don't feel any different, but then I really don;t expect to for another week or two. Although the sleep program DID in fact make me sleep better. Not quite through the night, but better than I usually do.

The broken wheelchair saga continues. Finilly got a call from the corporate office of the airlines today and they arranged for a loaner chair. (It's only took two days). On top of it it has no side guards and it's a bit small for my big butt, but at least it's a chair.

The weather has been hot and humid, but thanfully we go from air conditioned place to air conditioned place so it's not a big issue.

More updates tomorrow....Herrad...keep those funnies coming! I've enjoyed them.

Monday, September 14, 2009

Texas Day Two

Not really much to report on today. Spent the day at the clinic being testing and the machine re-calibrated to me. I've used the machine long enough now to know that it needs time to work, although the sleep program succeeded in making me drowsy. My back is still hurting but again, this will take time.

The weather here is HOT and humid. UGH. Not a great combination that's for sure. I'm making sure I stay hydrated and in air conditioning.

Well that's it for tonight as I'm still pretty pooped.

Hope your all doing well.

Sunday, September 13, 2009

Texas Day One

As promised I’m resuming my daily blogging while I’m here in Texas for medical treatment. You wouldn't believe me if I told you about all the fiascoes that befell us. Just to get from California to Texas. Reminds me of one of those Lucy and Ethel madcap adventures you’d see on a late nite I Love Lucy re-run. From our plane departing from LAX 40 minutes late,( thus causing us to arrive at Dallas 40 minutes late), to only being offered beverage service ONCE with no food for purchase offered, not even a pouch of peanuts! (Keep in mind this flight was a three hour flight).

We arrive at Dallas, tired, cranky and hungry, (I had been up since 1:30 in the morning and my caregiver 2:30 to make the drive to LAX in time to catch the 6:50 am plane). Not to mention our arrival was 40 minutes late. (We only had an hour layover). We had to get to a completely different terminal to catch our connection that was leaving in 20 minutes.

So, we did what anyone rational and in a wheelchair would do, asked for help. Only to have one of the drivers for the disabled carts refuse to transport my manual WHEELCHAIR, which in turn caused us to miss our connecting flight.

Our second, second connecting flight was then changed THREE times due to mechanical problems with a plane, mechanical problems with a gate, and frankly I can’t remember or care less what the third reason was. We go to board the flight from Dallas to Corpus Christi (FINALLY) only to discover that they had assigned my caregivers seat five ROWS behind me. (Before you ask, YES they knew we were traveling together and she was a medical caregiver). At this point I wanted to throw a huge hissy fit in the middle of the terminal. I had had enough of flying the airline “doing what it does best” as its slogan says. Fortunately, calmer heads prevailed (actually I think it was a young male airline clerk who was looking at two middle aged women wearing expressions very similar to the one his mother likely wore when he had done something wrong as a child. He caved).

FINALLY, we’re up in the air…..what else could possible go wrong. NEVER ask what could go wrong. To make a long story short because I’ve now been up 17 hours……it involved the airport police in Corpus Christi, a clerk with a BAD attitude and MY personal wheelchair that had been broken in the cargo hold and two MORE hours of our time. Nuff said?

Sunday, September 06, 2009


I'm taking advantage of the holiday weekend to REST. We went to church this morning. It was a wonderful service as the Bishop was here for confirmations and baptisms. We always enjoy the Bishops sermon. He is a truly gifeted speaker and it's clear the Holy Spirit speaks through him. I always have a change in perspective after hearing him preach. Today was no different. Unfortunately, we couldn't stay for the potluck because my back was really, literally, a pain. So home we went. I to pain medication and bed and my husband to the yard to take measurements for a fence we're going to put up. I find myself spending more and more time in bed lately due to pain. If it's not muscle spascity, it's my back.

I'm flying to the clinic in Texas next Sunday ( paindefeat.com ) to get my machine recalibrated. It's long overdue which is why the pain is back. While I'm not particularly looking forward to the trip it's self (I can't imagine how my back is going to tolerate sitting so long for the flights), I'm definitely looking forward to the time at the clinic.

I know that not only will my pain be better, but with a calibrated machine, I expect as last time  there will also be a significant decrease in my muscle spascity and a dramatic decrease in my level of fatigue. I'm traveling with a close girl friend, so the week will also give us an opportunity to catch up and have some quality "girl time" which is long overdue.

I'll do a lot more blogging while I'm in Texas.

Wednesday, September 02, 2009

Today was supposed to be Tysabri D day instead......

what I was told is that UCLA still has not sent their report to my Neurologist (no suprise to me. After making a patient wait 4.5 hours after their scheduled appointment to be seen, getting paperwork done likely is as much of a priority as seeing their patients on time is). So, we have to wait for their report. He suggested changing to yet another CRAB, to which my response was a pretty adament NO. So now I wait to see what comes first. Another exacerbation, UCLA's paperwork or my next appointment on October 28th. Anyone out there want to start a pool?

Yes, I'm ticked off. One thing I've always tried to be in my blogging is very honest and upfront. I'm not one to sugar coat the hard times or ignore the good ones. Right now I feel lost in the shuffle. UCLA didn't do their job, but neither did my Neurologists office staff. They should have started calling last week for a faxed report. If they didn't get it by yesterday afternoon they should have changed my appointment. THAT is part of patient care.

Tuesday, September 01, 2009

Who REALLY doesn't get "it"? Them...or us?

For all the bellyaching I do when I tell my husband he just "doesn't get it" ("it" being MS), I have to wonder if he get gets it more than I do. True I'm the one who goes through the shots, pills, cramps, "hugs", stumbles and falls, but he WATCHES. Knowing full well there isn't a damn thing he can do to help. Sure, he MIGHT be able to make things a bit better IF I let him and actually followed the instructions I've been given. Things like "Stay in the chair comes to mind".

I fight aand rail against the disease, often wasting precious energy doing so. While my husband stands back and watches me do it. Knowing full well I'll exhaust myself and pay for it with more cramps, less stamina and more fatique.

So which of us really "it". Those of us living through it or those who stand back and watch us suffer? Which would you rather be? Personally, I'd rather battle this disease any day of the week from my end than watch a loved on go through it.

Then again, I constantly pray for a cure, hoping we're the last generation of those who stumple and fall while our loved ones watch helplessly.

Monday, August 31, 2009

Neuro visit this week.

Well, Weds. is the day I see my Neurologist following the fiasco at UCLA. (To which I repeat I shall NEVER return to UCLA. They may be good, but they have grown large enough that the consulting specialist makes you wait 4.5 HOURS after your scheduled appointment to see you then doesn't bother to read your chart before they see you (or they would already know the answers to the questions they are asking). Going to be interesting to see what he says. He sent me there specifically to get the Tysabri referral, then they inform me they aren't in the "Touch Program" so they can't do that. Another waste of time as now I know he'll be sending me somewhere else. I've only been waiting FOUR MONTHS to get on it. go figure.

I've been doing pretty well. At least that's what I tell myself. My biggest challenge is pain. My legs hurt constantly. They feel very heavy and ache, usually waking me several times throughout the night. I have no stamina and forget about being able to be productive for any length of time. My fatigue level is unbelievable. I had my B12 level checked and it's fine. I'm also taking great vitamins, so it's all about the MS.

I'm traveling back to Texas in less than two weeks to have my machine "recalibrated". I'm only staying a week thi time. Wish I could stay longer but a week is all I can do this time around. I'm really looking forward to going. When the machine is calibrated exactly to my body the results are nothing short of remarkable.
I've included the link so you can go check out Dr. Rhodes' web site. The video for his MS work is also on youtube (Can you figure out which patient I am)?

Since I've had so much free time on my hands I've created a youtube site for our dog. Search MegaToonie and she'll pop up. I'm going to try to get more video of her up soon, but she's such a momma's monster that when see shes me, she's at my feet. Not much video to get when she's like that!

Now that blogger has changed it's posting box, where is spellcheck??

Hope you all are doing well. If any of you are on Twitter, I'm there as well code name....Journey with MS.

Wednesday, August 26, 2009

What would you change?

While my mom was here we had a discussion about what things we would change in our lives, both pasr and present. I came to the conclusion that I wouldn't change many things. I might change things as far as how other peoples actions have changed my life, but not the things that I have done. Even marrying my Ex. If I hadn't married him, I wouldn't have my wonderful children and grandkids.

I could have done without losing my hearing. THAT I would change. Of course, my life would be very different changing just that. I wouldn't have been working in the prison system. I wouldn't have fallen last year (I'm still off work over it).  Just changing that would have a dramatic impact in my life.

I would also change my MS. I could do without it. Not having MS would drastically change my life. Imagine, no more wheelchairs, slide boards, falling, shots everyday and my least favorite, Optic Neuritis. Not being dependent on someone else for everything. To dance again with my husband. Such a simply act, yet so meaningful.

So, what would you change if you could?

Monday, August 24, 2009

Back to Texas I plan to go...

It's a beautiful day outside. Hot, but beautiful. Too hot for me to be out in. Not only is it too hot, but I feel to crummy to be out anyway. I'm tired from overdoing, my back is killing me from my work injury last year that no one to this day has seen fit to fix and my frustration level is high because of all of the above with MS and difficulty hearing being thrown in. Enough to make one not want to get out of bed in the morning.

As I type this I sit here with a hot pack on my back, my STS machine running, drinking ginger and wearing a magnetic bracelet. If that doesn't show a degree of desperation I don't know what does. I'm tired of being tired, tired of being in pain and beyond tired of being an MSer.

I'm planning a return trip to Texas some time next month. If I could go tomorrow I would. Just to get rid of the back pain if nothing else. Right now my life consists of hot pads being microwaved every thirty minutes to keep the pain level as tolerable as I can stand it. Working on the MS issues is secondary at this point. I now have a deep appreciation for those who live with chronic pain year after year.

I think I got the blog issues fixed. Hopefully, comments will again be able to be received.

Hope your all well.

Sunday, August 23, 2009

I'm baaaack!

I think I FINALLY fixed all the problems with my blog. So now it's time the catch up on all the updates!

As you know I had an appointment at UCLA. Which was a bust. My Neurologist sent me there to get the referral for Tysabri so we could get everything started. Well, after waiting 4.5 HOURS past my scheduled appointment time, we were informed that UCLA is NOT a Touch approved center. (The Touch program is the program that all prescribing physicians and infusion centers MUST belong to in order to be able to prescribe and/or infuse Tyabri). Who would have thought UCLA wouldn't be an authorized prescriber. So in effect it was a waste of time for me personally.

I did however, learn that they ARE discovering the subgroups of MS. This means they will be able to identify which treatment works better with each subgroup. So instead of "cookie cutter" treatment, we will receive the treatment that is best for us. So, I was tested for the subgroup they have identified to see if I'm in that group. I should have the results next week.

My mom just left for her trip home. My husband had literally left with her yesterday to take her to the airport when we found out my brother was in the hospital with kidney stones and unable to pass them (still the current situation). Hence, they turned around, we went to the hospital and she stayed and extra day.

I had a wonderful visit with my mom. Actually gave me a few interesting topics for posts which I'll be entering over the next few days.

I hope your all well. I'm hanging in there. Still adjusting to the power chair. It's not quite my friend yet, but I know it will be. It just takes time.

Saturday, August 22, 2009

No topic

It's been a bit since I've blogged. My mom is here for a visit from Missouri and it's been great. I have so many thoughts to blog about but it will have to wait until tomorrow. Hope your all well!

Monday, August 17, 2009

OK.....now I'm frustrated.

I changed to yet ANOTHER blogger template to see if I could get anything back...and I did. However, instead of getting a date posted I'm getting this "Undefined, undefined" garbage. Any ideas how to get rid of it?


I decided to go back to the "Blogger" template because I was having too many problems with the other one......now I lost everything I posted. Thankfully, I printed out the first year of blogs, so I've really only lost 5 or 6 posts. You'd think blogger could do a better job with 1. offering better, creative templates and 2. not losing posts in the transfer, but hey what do I know, I'm just a regular blogger! ARGH

Stress and MS.

We all know that stress plays a major part in the battle we fight everyday with our MS. Good stress, bad stress, heat stress.....you name any kind of "stress" out there. I'm always looking for better ways to cope with the stress, because we can't always avoid it.

Someone sent me a link http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-stress-management regarding stress and MS. It's good reading and has some great points.

When you feel your stress level is building up, how do you deal with it ? (Could be another poll idea for Tara).

Saturday, August 15, 2009

Mom's coming for a visit.......

Well, now that a few days have passed I'm not so pissed off about UCLA. I'll never go back there, but the red haze is no longer clouding my vision. LOL.

I'm back to "It is what it is". God has is plan, I'm just along for the ride. Right now the ride seems to be a raging river and I feel like I'm barely keeping my balance in the raft. Thank goodness the rest of my life, while not perfect is pretty darn good. It has it's currents, but it's not a raging river.

Mom arrives Tuesday from Missouri for a visit. Why is it that it doesn't matter how old we are, we still strive for parental approval. I'm making my husband crazy making sure the house is picked up, the walls clean and pictures hung. In reality my mother wouldn't care, but I do. Hence the craziness that will occur between now and Mom's arrival.

I haven't seen my mom since my wedding last April. I hate the fact that my family is so spread out. Missouri, Florida, Kentucky, California. My brother and I are the last California hold outs and I doubt either of us will stay here when we retire.

I tried to do some research on the net regarding studies on MS subgroups and couldn't find anything. I'll try to dig a bit deeper to see if I can find anything. If I do I'll post it here.

I'm adjusting the the chair. It's incredibly responsive, so I'm learning just how much touch is required to maneuver it. It's really easy to over correct. That's where I get myself into trouble. I'm coming to like the chair, although I feel more comfortable in my manual. Probably because I'm so used to it. I sit in it and it's like home, where the power chair intimidates me a little. Imagine. Being intimidated by a stupid chair. Geesh. I really think that with being totally comfortable with the power chair requires more acceptance of my disease progression than I'm able to pull off.....yet.

Friday, August 14, 2009

Frustration and Antibodies

I haven't blogged in a few days because I simply had too much going on. I had an appointment at UCLA yesterday. I can not believe how we were treated. We will NEVER go back to UCLA under any circumstances.

First we waited FOUR AND A HALF HOURS after my scheduled appointed before we were seen. Then, it was clear the physician I saw, while she was very knowledgeable hadn't read my chart.

I was sent to UCLA strictly for an evaluation for Tysabri. The MD informed me that they are NOT affiliated with the Tysabri Touch program. In other words the appointment for me, was a complete waste of time.

However, I did learn a few things that I will pass on. I learned that my right eye has been permanently damaged because of the bought of optic neuritis I've had over the past year. Wonderful.

I also learned that the research they are doing with MS is not only geared to finding a cure, but to identify the different TYPES of MS. I'm not talking about RRMS, SPMS etc. They are working on actually identifying sub groups so they can focus on what treatment works best for that sub group.

How they are identifying the subgroups is through testing for specific antibodies. Pretty interesting . It means that they are identifying that there is commonalty between MS patients besides just the diagnosis. I will tell you more as I learn more about it.

Sunday, August 09, 2009

Year two. August 9th

Haven't blogged lately as we were away on vacation. While I could have blogged, (I never travel without my laptop), I decided to take a break. No blogging, no cell phone, no TV. It was absolute bliss. If I can figure out HOW, I'll post some video I took of the ranch. I got a new Flip Video (Which is awesome) for the trip and had a lot of fun zipping around the ranch in my scooter shooting it.

Today begins year two of blogging.

I've been doing pretty well with the MS lately, all things considered. I'm only having two side effects from the Copaxone: Site reactions with bruising and joint pain. The site reactions are no big deal. I can deal with that as well as the awful burning that follows the injection. (Feels like I was bit by fire ants). The joint pain may be a deal breaker. The joints in my hands hurt so badly it hurts to try and grasp anything and one finger is so painful it hurts to move it at all.

As far as MS symptoms, I've developed this "Hum" in my left heel and fingers. Hum is the best way I can describe it. It's a very weird feeling that comes and goes. It's not painful in the least, but it's annoying when it goes on for awhile.

I go to UCLA on Wednesday to see if I meet the criteria for Tysabri infusion. It will also be interesting to see if they take me off of any of my current medications. I'm on so many of them. At least I'm done with the steroids. The last dose was August 2nd. I won't do them again unless my eyes are effected. I was on the steroids for over 3 months. I gained so much weight it's beyond pathetic, which in turn makes me feel terrible about myself. I know it will come off with time, so I'm hanging in there with that issue.

My power wheelchair should be ready for delivery. They expected it to come in last week, so I'll be calling first thing in the morning to see if they have it.

Well that's all for now, I need to catch up on reading your blogs to see what you each have been up to over the past week!

Saturday, August 01, 2009

New Year

It seems appropriate some how that at the same time I'm starting year two with a new blog, I'm also starting on a new injection, Copaxone. I was on Copaxone before for about 18 months until it obviously stopped working for me last year. However, I just can't tolerate the side effects of the Rebif. I had forgotten how bloody much this injection burns, and I'm not just taking when you inject. I'm talking for 10 minutes afterwards as well. Crap. I hope it eases over time...to say just 5 minutes. Geesh.

Other wise things are about the same. Left leg doesn't want to work, eyes don't want to work, ears don't work and my back gives me constant pain. Gee....I sound like quite the pick don't I?

Fortunately, I go back to UCLA the week after I return from vacation (we leave tomorrow YIPPEE). I'm hoping they will take me off at least half the drugs I'm on. I'm seeing them for the Tysarbi program to see if I qualify. I'm praying that I do. While part of the whole Tysarbi business scares the crap out of me I know that if it works, it may be my last hope to stop further progression. Besides, statistically the odds of having a complication worse than an IV site problem is in my favor. I'm at the piont I just want to do it and get it done.

Well everyone, have a wonderful weekend. Read a book for me Webster!

Friday, July 31, 2009


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.

Wednesday, July 29, 2009

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........

Tuesday, July 28, 2009

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?

Monday, July 27, 2009

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.

Sunday, July 26, 2009

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!

Friday, July 24, 2009

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.

Tuesday, July 21, 2009

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.

Monday, July 20, 2009

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!

Wednesday, July 15, 2009

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.

Tuesday, July 14, 2009

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 .

Monday, July 13, 2009

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.

Sunday, July 12, 2009


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!

Thursday, July 09, 2009

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.

Sunday, July 05, 2009

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!

Thursday, July 02, 2009

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!

Tuesday, June 30, 2009

Just call me "wifey" wanna be

Today started off is it's usual fashion as I stated in my earlier blog. After blogging I got up, dressed and pondered about what to do with my day. I use my scooter even in the house for energy conservation, so I was feeling pretty good. I decided to tackle the laundry. I have someone who comes in and cleans my house and does the laundry for us so Mark doesn't have to to everything on the few days he's actually home.

Anyway, as I said I decided to tackle the laundry. I sorted and started the load of towels. YEAH. I was actually doing something "wifey". (I always loved keeping my house neat and clean). I then came back, tidied up the dining room then relaxed until the washer buzzer went off. Still feeling pretty good I decided to do load two. YEAH, I was still able to be "wifey".

Feeling pretty darn proud of myself, I decided to scooter on into the master bedroom and tidy that up. By the time I was done buzzers were buzzing, so off I went into the laundry room. Folded the towels put the whites into the dryer and then scootered my way to the linen closet.

Nothing makes ME feel better about me than when I can tackle a household chore I haven't been able to do in awhile. While it WAS a challenge getting the clothes in and out of the dryer I DID IT.

After I put the towels away I realized I was feeling a tad tired. So, I sat on my reading chair, covered myself with my beautiful prayer blanket and decided I was going to surf the net. I woke up 2 hours later when the phone rang! Then I moved to the couch for another 2 hour nap with my blanket and cat.......until the phone rang AGAIN!

Uh oh....this means the whites are still in the dryer and the load of colors are still in the wash. Wonder if they will be OK until tomorrow when my caregiver is here???? LOL So much for being "wifey".

Goodbye June

Most folks enjoy the summer. The BBQ's, warm weather, boating, all the family gatherings and playing touch football. I used to be one of them. Not now, no way. I dread the summer. The heat keeps me housebound most of the time. Thank goodness for the cooling vest. At least it gives me a solid 2-4 hours outside depending on how hot it is, and it's been HOT here this June. I'm sorry to see June go, even as hot as it's been. Means July will be coming in with it's usual heat. At least we don't have the humidity some of you have to deal with.

Today is off to a good start. My pain level is manageable (Which is amazing considering last night was Rebif shot night. I ache but I feel as if the truck only hit me once last night and didn't back up and roll over me again).

I just wish I was seeing (literally) an improvement with my vision. I MISS reading! My sister sent me several books for my birthday that I haven't been able to touch. Even using the magnifiers don't help much. When I try to use them longer than about 15 minutes I start getting a headache. So, I'm left with watching TV (YAWN) and zipping around the house in my scooter. (Which I have to admit is kinda cool). The scooter has made a big difference with energy conservation).

Tomorrow PT resumes. (PT short for physical torture). I had a rest last week from PT and MD appointments. They all start up again this week. I'm holding out hope that with each MD visit they will take away a pill or two I'm taking every day. One must have hope!

Stay cool everyone!

Monday, June 29, 2009

The Bow Award

Thank you Ms. ME http://txphoenix.blogspot.com/ for The Bow Award! I'm glad you enjoy my blog. I, as everyone else who blogs, often struggle with a topic or exactly "how" to say something.

So, a year ago, when I started blogging (can you believe it will be a year July 31st?!), I promised myself I would write following ONE simple principle. Keep it honest, even when it was painful. (Heck, ESPECIALLY when it's painful). For me, blogging has been a great therapy. It's helped me put emotions, feelings and frustrations into words. Words that I may not have been able to find any other way. Blogging has also helped me learn a lot. About myself, MS, and the experiences of other MS sufferers and how very different our MS experiences are from one another. An example of this was well written by Tara http://livingdaytodaywithmultiplesclerosis.blogspot.com/ as she wrote about a wedding she attended in which there were several guests there with MS, all effected very differently.

The one thing in common we all seem to have (besides MS) is a fighting spirit. That special something that keeps us going, putting one foot in front of the other (literally or figuratively). Often when it's the very last thing we want to do. I think it takes a very special type of courage to do that. On that note, I'm passing The Bow Award on to all the other MS bloggers out there, who like, me "Keep it honest" and have that very special courage that keeps you going, even when it's the very last thing you want to do!

Sunday, June 28, 2009

Letter to caregivers.

Obviously MS changes your life. The diagnosis shakes you to your core and the disease itself can be kind or cruel depending on it's own perspective. MS, for me, is something that has a life of it's own. No matter what I do, what treatments I take, MS is going to do to my body what MS is going to do. Period.

As MS has attacked my body I have lost more and more of some of the physical abilities I always took for granted. Walking for one, finding words for another. I, like most MSers learned the hard way what my limitations are, and what the consequences I have to deal with, often for days, if I ignore them and push on.

However, one of the things I absolutely refuse to allow MS to take away from me is MY right to choose and make decisions for myself. I'm the one who chooses whether or not to push a limitation, I'm the one who decides what I can and can't do. I may not have much left, but I refuse to allow someone else to make those kinds of decisions for me. The day I start allowing that I may as well crawl into bed and stay there.

I know that when a complete stranger looks at me in my wheelchair, they rarely see ME, they see a handicapped person in a chair. I get that. I understand that. However, I DON'T expect my close friends and family to see a handicapped person when they see me in the chair. I expect them to see ME, KIMBERLY. Not the chair, not a handicapped person. I expect them to treat me the same. Don't make decisions which lead to me being excluded from activities or gatherings because you "think" it may be "too much" for me. That's MY decision to make, and if I decide to push a limit in order to participate in an activity then that's MY decision.

I understand that those who love me want to protect me. They make the decisions "for me" out of love. I appreciate that and truly understand. However, what you have to understand is making decisions for myself is really the ONLY thing I have left. If you take that from me you have reduced me to nothing. It's hurtful and makes me feel like I'm no longer important or part of the family. How could I feel otherwise when there is a family gathering to celebrate a birthday and I wasn't invited because of stairs? Then, I find out about the birthday party through a niece on Facebook? Again, I truly understand the decision was made to protect me, but do you have any idea how hurtful that was? I wouldn't have missed my brothers birthday party for the world. I doesn't matter how many stairs I would have had to climb. I would have done it.

I hope this brings understanding to the friends, family and caregivers not only of MSers but anyone who has physical limitations. We're still US inside. We may not be able to walk or tolerate heat. We may stumble and fall, talk funny now and then and tire easily. However, we still think and feel, love, get angry, cry and wish with every fiber of our being we didn't have MS. SO please, for as long as we have our minds, let US decide for ourselves what we can and can't do.

Saturday, June 27, 2009

Just call me Watermelon Woman!

This is exactly how I feel I look right now. Totally ROUND. No freaking way
will I allow anyone near me with a camera. I figure I'll be off the steroids around Mid August as slow as they are titrating me off. (Decreasing by 10mg every 2 weeks). By then I will have been on steroids for FOUR months straight.
The worst part is that even though I've been on the steroids, I'm still continuing with the exacerbation that started in April. Hence the referral to UCLA for the Tysabri consult. Even though I've had really mixed thoughts about the Tysabri treatment, spending four months on steroids tends to make the decision to do the infusions easier. Anything to stop this exacerbation. Anything to get off the steroids......anything to make this weight come off.
On a positive note.....wait, give me a minute, I know I'll think of one. Ummmm....still thinking.
I know......My husband still loves me....no matter how round I get!

Pills, Pills and more Pills..........

I've been on steroids continuously since April 26th. I think I've tolerated them fairly well. Minimal mood swings and no feeding frenzy's. Of course I've gained a terrible amount of weight that will take me year to get off, if ever. (I've tried not to focus on the weight gain. I can't control it so there is no need to make myself crazy over it).

Between all the new pills I'm swallowing 3-4 times every day and the Rebif (which sucks. Since the exacerbation all the nasty side effects of the Rebif have come back), I think I've been dealing petty well with the steroids. Until last night. I was brushing my teeth, looking in the mirror when I suddenly realized I have that terrible "steroid face". My face is so swollen and puffy. It is WAY beyond fat. I look like someone removed my head and placed a large over ripe cantaloupe in it's place. Perfect. MS so sucks!

Tuesday, June 23, 2009

Another month....

almost gone. In fact the year is almost half over already. I think we tend to get so caught up in day to day living and simple survival (especially when you have a chronic disease) that we forget to stop and actually LIVE. I had a great LIVE evening. My scooter arrived yesterday. It's pretty cool. Has side rear view mirrors, a horn, turn signals even hazard lights. It travels up to 22 miles on a single charge and can go a whopping six miles an hour (too fast for me....so far :) Anyway, I rook "her" for a spin this evening.

One of the things I had missed was taking my dog, Petunia (a.k.a Toonie) for walks. Toonie is an Olde English Bulldogge. The breed is VERY active with LOTS of energy. You don't keep them physically active enough and, as with any bored animal, behavior issues pop up.

So, I decided to take Toonie for a walk. Put her on her retractable leash, threw a bottle of water in the basket and off we went. It was great. I was outside walking my dog! (OK so the dog was doing all the walking but I held the leash)! We had so much fun. She loves to hold part of her leash in her mouth. I think when she does that she thinks she's walking her "human" and not the other way around.

We maintained a pretty good pace around the block. She even ran full speed for about 1/2 a block. We stopped a few times and I gave her water out of the bottle. She was absolutely in her glory. When the round was completed she still looked like she had plenty of energy, so off we went again. I was amazed at how much energy she had. Of course it could have been that she was simply thrilled to be out walking with her mommy. Normally she only gets walks when dad is home and she loves them.

She ran about 2/3 of the second go around. I forced her to slow to a walk to cool down for the last 1/4 of the block. I imagine she'll sleep pretty well tonight. The plan is to get up early in the morning and repeat the walk before it gets too warm. It was 85 here today. I would have had to wear my cooling vest to be out when it's that warm. To avoid that it will be early morning and evening walks only.
The scooter is proving to be a great addition to the family. It's giving me back activities I couldn't do and letting me LIVE area's of my life that were simply passing me by. ANYTHING that does that is awesome! It makes how you feel, how much you hurt, how frustrated you may be or how angry fade when you experience the simple joys that had been taken away. It doesn't take them away. It simply makes you forget about them for a few moments in time.

Saturday, June 20, 2009

Inspired by Herrad

Herrad has the most amazing photographs on her blog. I thought it was past time I shared some of mine. I love photography, always have. My absolutely favorite medium is 35mm B&W. I know, I'm a dinosaur. I've also always loved macro photography. I find it very challenging. I recently decided to enter the "modern" world of photography and invested in a nice digital camera. In addition to all the
"standard goodies" I invested in two macro lenses. As my skill with macro
photography develops I'll add diffusers etc.
These are just a small sampling of some of the flowers we have in our front garden. Above is a "Pope John Paul' Rose.
This is one of our day Lillie's.
One of the reasons I love macro photography is seen below. The close up detail your able to get is amazing.

This is my "Disney Rose" bush. The variety of colors on the bush never ceases to amaze me. I can have a dark pink rose on a stem right next to a peach rose. Everyday I seem to notice a rose of a different color on this bush.

Here is another example of the detail you get using a macro lens. Not only are you able to clearly see the smallest details, but the color is amazing as well.

Tiny flowers that I have in a decorative pot on my outdoor garden table.

This is Petunia, aka "Toonie". Mommies girl. She has a
face that only her Mommy could love, (and she does). Toonie is an Olde English Bulldogge. She is 8 months old and already tops the scale at over 60 pounds! She doesn't have a mean bone in her body. She's a real sweetheart but her size, and her constantly barred teeth makes her more than a tad intimidating.