MRI Dread...

Tomorrow my spinal MRI is scheduled. The dread has been there from the minute my doctor said I needed to get it done. I have such a dislike of that narrow, noisy tube! Lying on my back for two hours is almost unbearable. It doesn't help that I'm feeling a bit under the weather. Head cold or allergies maybe. Not quite ill enough to cancel, but concerned that sneezing may interrupt the process causing them to have to start all over again.

Oh deary me! What am I going to do? For now, I think I'll put in movie and do a little "escape from the real world" therapy. I'll let you know how it all turns out! Till then, wishing you a lovely spring day and lots of JOY!

Praying for peace of mind....

My 5K Walk...

I signed up for a 5K Walk, which was very optimistic of me, since I have barely been able to walk down the hallway in my home. I haven't even been walking to the mailbox, because I've been so weak and off-balance. This 5K was important to me though. It was to raise money for the NOCC, National Ovarian Cancer Commission, and I walked in memory of my mom and my niece. They were both taken from this life much too soon, mom at 65 and Lizzy at 17!

I was in the Virtual Walker category, since the actual walk was in Arlington, Texas, so I walked on my treadmill. I broke the walk into 5 parts, and the final leg was 22 minutes. It took me 108.51 minutes to walk a 5K, broken into those 5 parts over a 6 hour period. A 5K walk would have been a breeze a few years ago, but age and MS have changed many things I once did easily. Even so, sometimes it's important to push our boundaries. To challenge our limitations. I was completely prepared to accept it, if I was only able to walk a quarter mile or less. One important thing I've learned, during the past 14 years of living with Multiple Sclerosis, is to recognize when you've reached your limit. That's why I had to break the walk into parts. Each time I stopped, I didn't know if I'd be able to get back on the treadmill. I rested, drank lots of water, and began again.

I'm proud of raising money for this cause. I'm proud of pushing myself and making it to that virtual finish line. As I walked, I imagined mom and Lizzy cheering me on. I imagined a world where no one else would have to lose a mother, a daughter, a grandmother, a granddaughter, a sister, a wife, an aunt, or a niece to this deadly disease.

Sunshine Today...

There's been sunshine this afternoon!  The day began with a winter storm, snow and strong winds, but all has settled now.  The mounds of white are starting to melt, though I doubt it will all disappear just yet.  I got out a couple days ago, and started bringing in the Christmas lights.  They stayed up way too long because of the freezing temperatures.  The ones along the roof-line are still there because they were frozen in place.  It's predicted to warm up to the low 40's by Friday, so they'll be coming down soon!

I have been in such a happy place.  Dreaming of spring and the projects I want to do.  This is the year to repaint several rooms inside my home.  I keep wavering on color.  Do I go bold or stay with neutrals?  I just can't decide.  I am leaning toward neutral beach tones, especially for our bedroom.  I love the coast, and I'd like to have a light, "beach cottage" feel without being too obviously "beachy"!  Lol!  I'm pretty sure I'll stay with white paint for the family room/kitchen/dining area.  It's much easier to get the color in the accessories, than risk making a color mistake in such a large area.  It's fun thinking about it.

I'm still battling the eye problems, so if any of you have noticed I'm not commenting on your blogs, it's because my computer time has to be very limited for now.  I'm believing this is for a short time!  I love visiting blogs, reading about your lives, and I hope to be back at it soon!

Stay warm, spring is just around the bend!

Art by Kate Greenaway, Free Image courtesy of Dover Publications.

The MS Struggle Continues

I'm very close to making a decision on medications for my MS.  I'm thinking of moving forward with the Gilenya.  There are risks, but there are very few options at this time.  I saw a marvelous Doctor this past week.  She is a neurological ophthalmologist.  She feels that the risk to my eyesight, from the medication, is minimal.  The risk to my eyes, from the MS itself, is actively happening.  I have something going on called Optic Neuritis, mostly in my left eye.  I'm having a lot of trouble with my vision.  I'm spending very little time on the computer because of it.  Thankfully, computers allow us to make the lettering very large.  That way when I do check in, it's much easier to read.  My eyes just tire very quickly.  This condition happened back in 2006, but after a couple of months I recovered almost all of my vision.  The doctor is also watching for something called macular edema, so I'm using medication in both eyes every night, as well as drops every two hours.  I see her for another evaluation in a couple months.  This is a lot of boring information to most, but hopefully is interesting for those of you who have been following my journey with the MS.  (By the way, I should edit this for run-on sentences, etc., but my computer time is running out for today... sorry...)

As for the rest of my life... excellent!  My husband participated in the Alzheimer's Walk and Vintage Car Show yesterday.  He walked in memory of his mother and grandmother, who both passed from Alzheimers, as well as for an aunt who currently has it.  Today he is honoring his dad, by participating in a Veteran's Vintage Car Show/Benefit.  My sons are happy and enjoying their classes.

Autumn Scene. Free image, compliments of My Vintage Studio.

I am loving the cooler autumn weather and seeing the changing colors!  I'm appreciating all the visuals so much more, and not taking one thing for granted.  Wishing you a beautiful week.  Enjoy autumn!

WARNING: This is Not a happy post...

I'm trying to remain positive, but having MS is really getting old!  So, if you came here today looking for something cheery... well, you may want to move along, right now, to some happy decorating/cooking/gardening type blog, because I'm getting "beat up" by MS again, and I have to talk about it!

I have been in a downward spiral for some time now.  The pain in my lower back and legs was unresponsive to medications, but now that pain has gone.  Instead, I have lost feeling in the lower back and most of both legs.  My left eye is again swollen, vision blurred, and is being treated with steroid drops.

They (the great "they" of the medical world) are offering me Gilenya.  A disease modifying drug, which also happens to have death, heart problems, loss of vision, compromised immune system, etc., to it's short list of "side effects" and I don't have the time, or the stomach, to read any more...

Pray you say?  Yes, I have done that, and also have many friends and family praying for me.  Awesome!  But, God does not always choose to heal people.  Even really nice folks like me.  I can accept that... sort of.  I do believe He loves and understands me... I never doubt that!

Where to go now?  What to do?  Say "NO" to this drug, and live with the certainty that this disease will continue to tear my brain and my body apart?  Say "Yes" and take the risk of leaving my family way before my time... or going blind, which steals my favorite activities from me.  Choices.  Choices.  I do not like these choices, but after this brief "pity party" I will dry my eyes, put my "happy face" back on, and try to pretend that life would never give us way more than we can handle.  I'll be back soon, hopefully with a big attitude adjustment and a more optimistic view of life.  Till then, be well dear friends!

Pushing Through the Pain...

It's been a while since I shared much about my journey with MS.  The last three weeks have been very difficult physically.  I had to swallow my pride and have my husband put my walker back in the car, in order for me to even leave the house.  It's been a long time since I had to use a walker.  The timing has been difficult, because we've been on the countdown toward my youngest son leaving the nest.  Move-in day at college is this Saturday!  I had plans for joyful shopping trips and last minute fun moments together, but this recent attack on my body made it nearly impossible.  A few days ago, I had to be placed on a heart monitor for 24 hours, and they took an ultrasound of my heart... no results yet, though I'm fairly certain they will decide it was something called an MS "hug" that I was experiencing.  They increased my pain medication, added steroids and muscle relaxants...  The results were that my face and neck swelled up night before last, and I woke in the wee hours of the morning fighting for air.  This is apparently from the steroids.  I'm feeling much more myself today, although I will still be using my walker and/or canes for the time being.

When I'm tempted to let the "dark days" take over, I have to remind myself how blessed I am.

~ I have family and friends who love me, and pray for me.
~ I'm still able to do many things I love.
~ There are those much worse off than I am.
~ I'm one of the fortunate ones with a good health insurance.

I have a faith that sustains me, even on days when I just want to sit and cry like a small child.  When those days come, and they do, I can find my way out of the darkness because of that faith.

It also helps to read about what others are facing in their lives, and how they deal with it.  I've shared many times about Baby Gabe, and his journey.  Here is a link to an uplifting blog I just discovered.  The writer is Jenn, and she shares about Gabe's birthday balloon release, and about her own journey with an invisible illness.  I think it will bless you, it certainly blessed me...  Her blog is called Chasing Joy.  Then, take just a moment to read Julia's Happy Birthday post for little Gabe, here at The Four of Us.  It is beautiful!

Well, my youngest just walked into the house... time to get busy on that list of things we want to fit into the next two days!  Wishing you a day filled with love and simple joys...






 

Got Lemons?

Do you ever feel that you've just let life throw you off-track?  Well, I have.  All my grand intentions to do more writing, to get organized, even to go on vacation... everything got side-tracked due to more health issues (I refuse to bore you with details today), family concerns, budget derailments...

I've missed several Sunday Scribblings, and I haven't even gotten back to my other writing.  Just too many things going on.  Our air conditioning went out during the hottest two days we'd had this summer.  Multiple Sclerosis and heat are not a good mix.  Thankfully, the same company that installed our furnace a few years back, agreed to come out the day it happened.  They had a brand new unit installed in two days time.  Right now my feet are too cold, so I had to put on socks!

The only downside of the new AC, is that we've had to cancel our trip to the coast.  My husband and I have been to the Oregon Coast twice... once on our honeymoon and once on our 25th Anniversary.  This year will be our 30th, and we really wanted to go again.  We will, it just will be later than planned.  Instead, we have decided to do a few home improvements, be tourists in our own valley, and just have fun here at home!  It's called making lemonade, and enjoying it! So, make time to relax, kick your feet up, pour yourself a tall glass, enjoy the sun, and be thankful for the little things...

Summer Update...

Sorry I've been absent so much.  Summer gets lazy... and busy... and hot... no big excuses, just the normal ones.  I'm still slowly sorting through my possessions for stuff to donate, sell, recycle, or free-cycle.  Slow and steady wins the race... at least I hope that's true.  It sometimes feels like the more that leaves my house, the more I find.  It's like Mary Poppins magic carpet bag... you can't believe all the stuff that comes out of that little bag... and, there's always something more!

I'm also working on my art/craft projects.  I've discovered I stink at decoupage.  How is that possible?  It's such a simple concept.  Paste images on something, brush with Mod Podge, let dry, and done!  Mine keep coming out all wavy and wrinkly.  Maybe I should stick to pencil drawings.  At least with a drawing, you can erase the mistake.  Oh well, I am having fun with it and that's what's most important... right...

MS Update (skip this if you prefer not to read about health issues):I am doing a semi-detox.  Took myself off injections about 2 1/2 weeks ago.  Injection sites just weren't healing anymore.  Stopped the Lyrica about three weeks ago, with Doctor approval.  I am giving my body a break before starting any new therapy for the MS.  This has increased some symptoms, but helped others.  It's like with any medical condition... what works for one may not work for another.  Thanks to my readers who have supported me in prayer over the last couple of years.  Keep praying for a cure to this nasty thing we call Multiple Sclerosis!  There are so many who suffer with it!

Okay, that's it for the serious stuff.  I hope everyone is having a wonderful summer.  Fill it with family, friends, bbq, watermelon, swimming, baseball, summer movies in a cool theater, concerts and art in the park... on and on.  Make some happy memories!

Summer Heat, New Projects, Beginnings...

After weeks of cooler than normal weather, the thermostat hit 101 yesterday.  Those familiar with MS (multiple sclerosis) know that heat is our enemy.  I have to be very careful about my body core temperature, so summer is the season for hibernating indoors. Spring never seems to last long enough for me.

While I'm waiting for October, I've decided to keep busy with some indoor projects I've been putting off.  I started a blog for my art and sales.  It's called Moonflower Cottage, same name as my Etsy site.  I do not have any items for sale on either site at this time.  These are works in progress, but I am hoping to have them actively running within two months.

I'll be selling homemade cards, reclaimed items that I put my own spin on, possibly some original art, and some vintage items I've decided to part with.  I'll post a note here at Little Grey Gardens when I have added items to sell at the other sites.

This is something I've wanted to do for a long time, I just hadn't found the energy or motivation to get started.  It's a new beginning for me.

Sunday Scribblings - Milestone

Reaching 2010 is a milestone... a marker in my journey.  I've been looking back over the past 10 years.  They have been years of change... there has been fear, joy, sadness, faith, loss, miracles.  I want to share about some.

Ten years ago, the year 2000.  Life was pretty good... then in June came the news that I'd both feared and expected.  "You have Multiple Sclerosis."  My mom and I sat without speaking for a moment.  I asked the usual questions. What is the next step?  How bad will this get?  Are there treatments?  The neurologist went through everything step by step... yearly MRI's, injections, the exacerbations, possible results; blindness, loss of kidney and bowel function, becoming paralyzed, loss of mental acuity, the list went on.  While we sat and listened, I held the terror inside.  I know my mom did too.  We made plans for the next visit, politely said our goodbyes and headed for the car.  Somewhere in the lobby I felt my breath catch in my throat, mom reached for my hand and the tears came.  Not the loud sobbing kind.  The quietly streaming tears, pain in the chest and throat, unable to take a breath or to speak kind.  "It will be ok." mom said through her own tears.  That was the beginning.  There were more trials to come.  More losses.

A lot of what happened in the past 10 years is a blank page to me.  I don't really know if it was due to the MS affecting my concentration, or if it was a signal that the stress had gotten to be too much. 

Illness and loss are things so many families deal with.  I bounced back and forth from being plagued with fear and "what ifs" to being in a place of complete faith and peace.  Right now, I am listening to Mahalia Jackson singing "Take My Hand Precious Lord".  As always, I am struck by how much her singing reminds me of my Grandmother's singing.  It's one of those small things that lift my spirit.

I am now on a search for the missing memories of the last 10 years.  I've been combing photographs and letters.  I'm finding the joyful moments that had somehow faded into obsolescence for me.  In ten years, there were heartaches, but there was also great joy.  Even as I look at my journey with MS, I see hope.  There was a point where I had to be helped to stand.  The dizziness and muscle spasms required me to use a walker.  I progressed from the walker to a cane, and then one day I was able to lay the cane aside.  Recently, a few symptoms have returned which require some use of the cane again, but still I rejoice.  I am nowhere near as disabled as was predicted.  Some of the "white spots" on my brain disappeared and the newer ones were very small.  I know some of this is medicine, but I believe that much of it was due to faith and prayer.

As I reach my ten year milestone in June, I will remind myself that loss is part of living.  I will remember the joys I was privileged to share.  My focus is on living each day.  When I do look toward the future, I do it with eyes of faith and it looks bright.





Copyright February 01, 2010 ajj

Remembering Ann... and other things...

Heaven gained another member, and we lost an earthly angel...

Ann is the mother of one of my dearest friends. I say "is" because I believe she lives on, just out of sight, in the company of saints and angels... in the presence of her Heavenly Father.

Ann was a close friend of my mom's, and after my mom's passing, she often reminded me that she prayed for me every morning. She said she had decided to cover me with prayer as my spiritual mom.

Ann not only prayed for me, she took time to encourage me. She would call just to chat and ask me how I was doing. She had such a gentle, loving spirit. As someone at the memorial service commented... a real lady, who loved God, her family, her friends, her church. Gracious. That's the word I keep thinking of. I will have to pray a lot more to fill even a small portion of the gap that she left. I've already added a couple of names to my prayer list.

I will miss you Ann, your prayers, your faith, and your laughter!

And now the other things...

• I got the results of my MRI and it is mostly good news. Although I have two new lesions on each side of the brain, the changes in the existing lesions are only slight. The issues with balance, pain, numbness, and sight I am having should continue to improve with the higher dose of medication, and as I get to the end of this episode. I am still in the Relapsing/Remitting phase of Multiple Sclerosis (MS), so when I get hit with an exacerbation there is usually an improvement at the end of it. I am told you only recover some of what you lost during one, but up until now I have been blessed with regaining most of my functions. I am believing for the same with this one!
• Next, please pray for Pam Warden and her family. Her son Toby was diagnosed with MS, and it is an aggressive/progressive form of the disease. She just sent an email asking for prayer and support for him and his family. They are participating in the National MS Society Wisconsin Chapter Walk (http://www.wisms.org/). Please help support the MS Society's search for a cure. My husband has been active in the Idaho Chapter's walk. They do more than research, they give information and support to patients living with Multiple Sclerosis. Also, continue to pray for her husband John. I know if you take the time to visit Pam at Pam Warden Art or at Faith Folk Cafe, you will be blessed by her faith and endurance.
• While at Faith Folk Cafe, I found another blog that I love! It's called ooh lala designstudio and the artist is Vanessa Brantley Newton. She does wonderful watercolors. She is a children's book illustrator. While there, I read her February 9 post "Oh How My Soul Sings of Gratefulness" (if you click on the title it will take you right there)... Read the list of 10 things... It reminded me of how much I have to be grateful for!

Now, before I forget.... the Thank You's!

I've been absent from blogging for a while, due to a lot of family and friend situations. During that time, I have had what some call "a run of good luck" I prefer to call it a "shower of blessings & surprises" and this is a picture of the "Give Aways" I won recently.

Following is a photo of each item, and who it came from.

I won a Give Away hosted by Mary of Scottish Nanna for a lovely altered notebook! It came to me all the way from Australia. It's so beautiful!

I look forward to filling it with all kinds of keepsakes, notes and pictures. I also loved the card with the beautiful lilacs! One of my favorite flowers!

Thank you so much Mary! I hope you are feeling better! You are a dear!

Next I won a beautiful retro scarf from Jenn at Revive (Unique Handcrafts).

It made me smile when I opened the package and saw the polyester fabric pieced together to make this charming scarf. Jenn takes vintage materials and creates useable scarves, handbags, etc. Some of the patterns were very familiar to me... straight from the late 60's and early 70's I'm sure! What a sweet surprise!

Thank you Jenn!

I also won an autographed County Business magazine from a Give Away hosted by Pam of Pam Warden Art ! It is filled with so many beautiful treasures! I have browsed through it several times, and each time I notice something new and wonderful.

There is a world of amazing artists out there, and Pam is one of them. This is the page with her art, featured in Country Business magazine.

Pam, Thank You So Much!

I just received this latest prize, a beautiful bracelet!

Nita of Red Tin Heart hosted a Give Away for some of her jewelry creations. She awarded four prizes, and this is the bracelet I won. It's made with a Gold Monk's Stone and Vintage Glass Beads. It is even prettier than the picture reflects. Thank you Nita!

I feel very blessed today as I remember Ann, such a precious friend. I think about all that I have to be grateful for; old friends, and new; my wonderful husband and sons; answers to prayer; a home; my life; most importantly a Heavenly Father who loves even me...

Joy In My Journey

I have been having a few "bad" days with my MS. I had the worst headache I can remember having. It started Friday, and continued to get worse on Saturday and Sunday. I had told one of my very best friends about it.

When she went to church Sunday morning, they asked for all who were suffering with headaches to come forward. Since I was not there, my dear friend went up in my place. The pastor prayed for healing for me and that I would hear a song in my heart. My friend just told me about this an hour ago. The following song by Michael Card has been going through my head since Sunday evening. I've been singing bits of it around the house and when driving my son to driver's ed.

Joy in the Journey
Michael Card

There is a joy in the journey
There's a light we can love on the way
There is a wonder and wildness to life
And freedom for those who obey

And all those who seek it shall find it
A pardon for all who believe

Hope for the hopeless

And sight for the blind

To all who've been born of the Spirit
And who share incarnation with Him
Who belong to eternity stranded in time
And weary of struggling with sin

Forget not the hope that's before you
And never stop counting the cost
Remember the hopelessness
When you were lost

Cause there is a joy in the journey
There's a light we can love on the way

There is a wonder and wildness to life

And freedom for those who obey
And freedom for those who obey

I love the music and the lyrics of this song! Oh, and my headache was easing off at noon and was gone by about 2:30 Sunday afternoon. This is what keeps me believing in the power of prayer. I didn't know I had been prayed for, but I know the results. I've been struggling with these terrible headaches off and on for the past three months. They last anywhere from 3 days to a week. They are resistant to pain medication, and they had gotten progressively worse. Saturday the pain was well beyond the "10" in the "rate your pain from 1 to 10, 10 being the worst you have ever had" and I didn't know what else I could do... then somebody prayed.

So, today I put myself on our prayer chain for the other things that are happening in my body. I try very hard not to complain (though I do now and then... being human and all!) so I had not shared everything that's been going on. My left arm went numb a few weeks ago, and this week the numbness spread to the left side of my torso. What's strange is the skin is numb, but there is still muscle and bone pain underneath. My muscle spasms in my legs and back have returned, so I have been forced to use a cane to get around again.

Even with all this, I know I am so much better off than many people around the world. I have a loving family who takes care of me when it's needed, I have excellent insurance and health care, I have a church family that prays for me when I ask, and I have a Heavenly Father that answers prayer... sometimes with a miracle. My head is pain free today, and my heart is grateful that I can always find joy in my journey.