Monday, December 27, 2010

Crediting this One to God!

Luke 1:13 "...your prayer has been heard."

In my last post, I was given some ominous news about both legs having a bone infarct and possibly this would be in my hips, knees and shoulder as well.  I did the obligatory MRI last week and the same doctor who had read the X-rays and told me it was osteonecrosis informed me right away that he had been mistaken.  He now said it is clearly a stress fracture and nothing more.  A follow-up X-ray of both hips showed them to be in fine shape, no bone infarcts!

That was quite a Christmas present to receive!  I have a "boot" on the left foot which closely resembles the black Ugg-like boot on my right foot so you almost cannot tell!  Says something about Ugg boots!  I am trying to stay off it as much as possible to allow it to heal since the more I am on it, the more pain there is, especially when walking.  

The fear of never healing has left though and has been replaced by new hope that I can recover, lose weight and who knows, though it would be a miracle, perhaps run again.  With that hope restored, I have begun exercising again with my T-Tapp videos.  I took a "before" photo today which I will not show you until a year from now when I get to take the wonderful "after" photo!  

We had a wonderful Christmas Eve at Community Covenant and then a surprise invite to a friend's house for dinner and fellowship.  Wasn't feeling so great so we left early and I had a stomach episode at home which I kind of felt coming on all day.  Christmas Day was so nice and quiet, together as a family at home.  The kids were way more patient then I would be at their age, waiting for us to get up, make breakfast, eat (an hour later), open one present, delightedly put that Lego set together, open another present, delightedly put that one together while Mike and I took our Christmas Nap on the sheepskin rug with the dog in front of the fire!  They never asked if they could open a present.  I would say, "Ok, I think it's time to open another present."  I think the true meaning of Christmas really stuck this year!

I just realized today that I didn't take a single photo of our Christmas celebration because of feeling physically crummy I guess.  On Christmas night, I made a huge error in judgment.  We went out with friends to our favorite Chinese restaurant, China Pavillion.  First error in judgement was going there on Christmas Day because it was slammed and the staff was completely overwhelmed!  Second lapse was when I decided to try one little bite of a seafood fried rice including one little-mini scallop.  I thought I would challenge my system to see if I truly was allergic to shellfish or if I'd "outgrown" it since it arrived only after my transplant.  I couldn't be more wrong...had a doozy of a stomach incident about four hours later.  I'm done with shellfish.  

Thank you to all of you who have sent wonderful cards, treats and presents this year and even to those who are like me and have had every intention of sending something, but haven't been able to!  Please understand that we are so late in getting these things out because of how bad I've been feeling this month.  I am working on it little by little though!  If I were a company you'd ordered from, you would be a disgruntled customer by now, but thankfully you are family and have a larger capacity for grace.

Have a Happy New Year!

Monday, December 20, 2010

Merry Christmas, Dear Ones!

I am sitting here in my messy house, alone because the kids and Mike went to Carlsbad for 4 days, and battling the ants that are packing their nests up to move inside with the daily drenching we're experiencing with the Pineapple Express.   Instead of getting busy cleaning I am going through the cards and notes I received from you all almost two years ago when I went through my bone marrow transplant.   What a blessing to remember how much I am loved and I'm once again drawing from the encouragement as I face life with disability.

As you might have heard, I was told last week that the excruciating pain which I described as feeling like my ankles are breaking, was not an ankle sprain or fracture, but a "bone infarct" -- you have heard of myocardial infarction?  It's like that but it's in the bone -- the blood supply was cut off in the bone marrow and it died, making the bones very fragile.  It's not usually in that area (ankles or at the bottom of the leg) and is suspected to be in my hips, knees and possibly shoulder.  I have to get an MRI this week and see an orthopedic surgeon, but the news is that I cannot run or jump and that dead bone does not regenerate new bone if it's pretty far gone.  In early stages of osteonecrosis, i.e. dead bone, there would be no symptoms, and they can try to remove plugs from the bone marrow to stimulate new growth.  Ouch.  I was told by my UCLA doctor that this condition is not uncommon in his patients and is usually due to the prednisone which is why they try to get you off of it as quickly as possible.  I only wish I'd known that I should have learned to live with side effects of GVHD that deal with the skin and fatigue rather than the side effects of prednisone which are so much worse!  They never give you the details until you "need to know!"  This doctor also told me to live with the pain as long as possible before getting any joint replacements (hip, knee, etc.) because at my age I'd have to get them replaced in the future since they don't last forever.  I'll also probably be on some kind of medication to prevent more bone loss.

I had to grieve for a few days because it was the first time I had to swallow the reality that I would never run again, never return to my old self, back to the glory days of those 2 years in remission where I experienced the best health of my life.  I remember the feeling of that so well thinking then that it was like a taste of the unhindered life we'll experience in Heaven someday.  I felt completely free and energetic and alive!  Well, that must have been just a wonderful gift from God to enjoy for a season, making me crave Heaven even more because that is what it will be like.  Through the few days I was grieving, I clung to the truth of Philippians 4:6-7 which says:

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

I knew he'd bring me through it and restore that peace in my heart, and I told myself that even as I cried through the pain.  Sure enough within three to four days I was not only at peace about it, but over the next week the calling on my life to share the hope I have in Christ has been renewed.  He has allowed me to share in the sufferings of Christ and I want it to be used by God to bring others to His glory through it.

Now, I turn back to these wonderful cards, and would like to share some of the encouragement I received...

A friend writes that she prays the power of our God and His name will encourage me:
El Elyon - "The God Most High" He is the Sovereign God
Elohim - "The All-Powerful One, Creator"
El Roi - "The God Who Sees Me" God sees us in all our circumstances
El Shaddai - "The All-Sufficient One"
Jehovah Rapha - "The Lord Who Heals" He heals physically, spiritually and emotionally.
Jehovah Shammah - "The Lord is My Companion"
El Olam - "The Everlasting God"
Jehovah Rohi - "The Lord is My Shepherd" - God takes care of us.
Jehovah - Jireh - "The Lord will Provide"
Jehovah or YHWH - "I Am" - He never changes; His promises never fail

Isaiah 40:28-31 Have you not known? Have you not heard? The everalsting God, the Lord, the Creator of the ends of the earth neither faints nor is weary.  His understanding is unsearchable.  He gives power to the weak, and to those who have no might He increases strength...those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles.  They shall run and not be weary, they shall walk and not faint.

May God answer all the prayers that have been said for you by giving you new strength, health, and all His blessings.

Have a Merry Christmas!

Saturday, August 14, 2010

Initial Fundraising Goal Achieved!

I just received a package from my mom last weekend.  In it was the final checks which totaled over $4300 from the fundraiser she organized with friends in Bailey, CO at the end of June!  I was amazed at the generosity of that little town of Bailey, CO.  They put on an aerobics-marathon with some ladies, even an "elderly" woman working out for 5 hours straight!  No kidding, how did she do that?  So they were sponsored for the time they worked out.  They also had a bake sale because they obviously needed the extra calories that day!  :)  They had t-shirts made and had a dozen or more local sponsors!  They ALSO had a bike rally that ended with some raffle drawings at The Crossroads Bar & Grill which supported us with 10% of their proceeds.   Two local papers ran stories on it and it was a real success!  Amazing!  Such a blessing...

Here's the Thank You note I sent to the folks of Bailey who came out.  Glen Moses, my mom's husband, put a nice brochure together which included our photo, this letter and the summary of the event for everyone, and even had it framed as a gift for the sponsors.  Thanks, Glen!

July 7, 2010

Dear Mom,

Please pass along this note of thanks to all the wonderful people who volunteered
so much time, talent, and money to support our family. I never knew what a special
community you have there until now. These folks, while friends to you, are strangers
to me, but miles and unfamiliarity were not blockades to their kindness and generosity.

Those who know you obviously love you, those who don’t know you must love
their fellow community member or fellow man in general. That says a lot about a town.
I too have found a lot of local support and love from my own hometown of Santa Barbara
in the form of meals, childcare, and services like cleaning, organizing and mowing our
lawn. I know Santa Barbara has a few sister cities, but I wonder if Bailey could be added
as a sister city of Santa Barbara. I am going to look into how that works through the
Chamber or Mayor’s office, but if nothing comes of it, Bailey will now be a sister city in
my heart.

My appreciation for what you’ve done for us is so much greater than any
thank you note can express so I’ll close for now. I look forward to visiting Bailey
in the future and giving you all big hugs, each and every one of you - I mean that!

(for the English Family)

So, our initial fundraising goal was achieved.  That redeems what set us back a bit.  Our continual monthly medical expenses for recovery continue and average $500-600.  Thank you for your support!  Even if you haven't given or are able to your prayers mean SO much!

Saturday, February 27, 2010

After a Long Absence...

Now that the requests are coming in from all directions, it’s finally time to update you! It’s been long while since the last update for three reasons. First, back in November my doctor had reduced and taken me off of prednisone (a steroid that I took to keep GVHD (graft vs. host disease) at bay. It suppressed my immune system so that it wouldn’t attack my own body; Well, stopping the steroid caused the GVHD to get stronger. If you saw me during that time, my skin was so flaky that I couldn’t see through my glasses for all the snow! GVHD affects the skin on my eyelids, nose, face head and hands and anywhere skin meets skin at a crease. It is dry, red, stinging, and flaky. The skin will wrinkle before your very eyes as GVHD waxes and wanes. Lately on my hands it’s been actually separating causing little cuts all over. Ouch!

As I stayed off the steroid through the holidays, things got worse. I had a cough that would choke me just above the collar bone, so badly that I couldn’t breathe and ended up in the ER once because of it.  They called it bronchitis at the time, gave me cough syrup with codeine and an inhaler for the asthma part of it, but it never got better, only worse over the course of 3 months.  I would have the coughing attack daily, worse when I spoke for very long, and worse at night.  Daily or at least every other day I was throwing up from the out-of-control coughing.  They tested me for every virus out there and pneumonia too, but nothing ever showed up to explain it.  After ruling everything out, finally my doctor informed me that it was graft-vs-host again attacking my stomach this time causing the gasses from the gastric acids (say that 10 times fast) floating up and burning that place above my collar bone causing me to cough and gag and expel my dinner.  Easy solution though.  Back on steroids at 20 mg and double my Protonix.  Within 2 days I was almost 100% back to normal.  No more coughing, no more vomiting, regained my appetite and had super energy (love that!)  And bonus, all my horrible skin problems cleared up! 

Two weeks later the doctors want to start weaning me back down off the steroids because you don’t want to live on them long term.  It’s not a healthy way of getting your energy either even though I’m loving it.  So at 15 mg. I noticed right away the GVHD returning to attack my skin.  One problem is the weather has been so nice and I’ve had a ton of energy causing me to be in the sun too much (even 5 min. without protection is too much) and causing me to overdo it because of all this energy!  Both those things cause the GVHD to flare and combined with a reduction in the steroid dose I notice it.

The skin separating is the most painful and annoying thing, so I called my doctor one day to ask him about it and he informed me that I am going to have chronic Graft-vs-Host the rest of my life so I need to learn to tolerate some level of symptoms that are not life-threatening.  That’s a bummer, but a challenge I’m willing to endure while calling on the Lord for healing and restoration.

So being completely exhausted and sick (non-contagious) non-stop November through January was the first reason I couldn’t bring myself to blog.  The second reason is I’ve been living like never before!  Well, living like a normal active person as before anyway.

The third reason is a by-product of the second.  Because I’ve been living a full life, there have been SO many happenings, so much to tell you, so many amazing touches from God in our life I could hardly keep up on all of it to share with you.  I try to do a little through Facebook so if you are not a friend of mine yet on FB please add me so you can keep up and see all the wonderful photos I’ve been posting of life through these more energetic eyes.  It’s been a lot of fun to get back into photography, taking photos everyday and sharing the good ones.

In order to not bog down the blog with one giant novel, story after story of God’s amazing love, I will have to do a series of blogs – challenging myself to a daily blog again.  But give me some grace while my mom is here visiting starting tomorrow.  I’ll try to blog every other day for the next week while she’s here.  

Next post will be most interesting as I reveal the photo of me from 1 year ago (around Valentine’s Day actually) and show you a photo from today…shockingly different!  Until then, be at peace and know that God loves you no matter what your situation!  He really does.  Just turn to Him and ask Him to show you Himself today!

The reason I blog…

Colossians 2:1-3

I want you to know how much I am struggling for you and for those at Laodicea, and for all who have not met me personally. My purpose is that they may be encouraged in heart and united in love, so that they may have the full riches of complete understanding, in order that they may know the mystery of God, namely, Christ, in whom are hidden all the treasures of wisdom and knowledge.