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:  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!