Since my last post I've completed another round of chemo and am well on my way to recuperating from that one. Yesterday I was blessed enough to receive a blood transfusion to help me along in the recovery process. I am hoping and praying that by tomorrow or Sunday I will be feeling a bit perkier. In the mean time, I've taken the time to rest as much as possible. I've been grateful that in starting our homeschooling journey this week (Monday was our first day of school) it has allowed for me to be home, stick to a schedule and therefore get the rest I need and the glorious peace that comes from just being home and having the ability to take it easy.
The Lord has been working greatly in my heart and life lately. I am so grateful for this illness that has caused me to once again slow down and refocus. Obviously I wouldn't have chosen to be sick, again, and go through chemo, again, but I know that the Lord has a purpose and plan in this and I am resolved to allow him to work in my heart and life to bring forth his will. I want to obey and submit and find out what lessons there are in this valley. I am desiring to grow while I'm here in the valley of sickness and I rejoice in knowing that things could be so much worse. I count myself truly grateful for where the Lord has me and really for just *being* here.
Right now it seems the Lord is really working on me in the areas of showing me His love for me, breaking me of people-pleasing and reminding me that it's only in HIS strength that I can win victories in my life. These are hard lessons, but I am so grateful for them. I want to take the time to share with you how He's working in my life with each of these lessons, but I really need more time to work them out in my life before I can share and hope to bless anyone else. I still have a long ways to go.
I can though give you a glimpse of the last issue. I've felt really discouraged over the last several years for not being farther along in my walk and struggling with the same battles over and over. It is frustrating when I can't seem to win a victory in an area of my life and it's something I have to keep coming back to and struggling with. Just when I think I've hopped forward it seems like I figuratively turn the other way and run back and pick up that very thing in which I was trying to get victory over in the first place. Paul seems to understand what I mean in Romans 7 when he says "For the good that I would I do not: but the evil which I would not, that I do." I'm glad that I'm not alone in this struggle, God's word is so comforting. I've realized though the main reason I struggle and fail; I seem to lean on the Lord for a time in breaking/building habits or getting victories in certain areas, but then once I think I've gotten past it so to say I think to myself "I've got this!" Then I end up trying to conquer habits or areas in my own strength and not leaning on the Lord in prayer and scripture to continue to help me in that specific area. It's hard and a lot of work on my own. It's stressful and leaves me feeling discouraged, despondent and like a complete failure. I almost don't even want to try anymore. On the other hand, when I lean on the Lord it may still be hard, but in HIS strength I am able to persevere and it takes the pressure off of me to say "Lord, I just can't do this own my own, I need your help to get through and continue to do the right thing. Please, just help me here." And continue to pray that way until doing the right thing becomes second nature. I also seem to discount the importance of praying about every. single. thing. I was recently reading a book on parenting and the author mentioned praying about something I would have never thought to pray about. It helped me to realize that I am truly not committing everything to the Lord in prayer and that's the big reason I am failing in my own efforts so often. The Lord does care about the little details in my life and He does want to help me work things out and order my days and such. He is my husbandman and he wants to be treated as so, involved in my life and communicated with often. He desires for me to come to Him. I'm sure many of you know all of this already, I'm just a little slow and see things differently at different times I guess. I'm just so glad that He is helping me to learn and grow.
I've purposed to keep a prayer journal of all the little and big things that I need help with, need to work on, figure out, make decisions about, etc. Instead of going to people for their advice or opinions I am first going to God, the One whom I should have been turning to all along. Yep, I'm slow.
I'm glad He doesn't expect perfection from me and that He understands and knows me better than I know myself. I am so grateful for His mercy and grace that renew themselves daily. I can't quite grasp that, but I'm trying to. And I'm also trying not to be so hard on myself.
Friday, August 10, 2012
Sunday, July 15, 2012
I’m just hopping through this journey day-by-day praying for enough light to show me the way
It’s
taken some time, but I am ready to blog again about my health, what is going on
in our lives and how the Lord is ever working through the valley’s. This is a
long one!
Update on My
Health & Dr. Appts:
The
beginning of June took me to Gainesville to meet with a specialist regarding my
Therapy-Related Myelodysplastic Syndrome. I thought that, and I’m not sure why,
this appointment would be a sit down with the specialist to go over my
treatment options and to discuss in depth and develop a chemo protocol that I
would take back to my doctor here locally. Instead, we talked in depth for
about an hour regarding the options to have either a bone marrow or stem cell
transplant. I got a lot of really great information regarding those two
options, but we didn’t delve into the subject of treating with this low-dose
chemo, Vidaza, and only discussed it briefly.
I
have been in remission for one year with the osteosarcoma and because of my original
diagnosis and the 25% cure rate that the doctors believed I would have, the MDS
specialist does not recommend that I pursue a transplant of any kind as of
right now. The main reason is that my combined cure rate for the osteosarcoma
& MDS is about 10%. A transplant is such a serious and extensive treatment
plan that he feels as if it would do me more harm than good right now.
Thankfully,
my MDS was caught early and the doctors, both the specialist and my local oncologist,
believe that the Vidaza, a low-dose chemo that helps bone marrow regenerate
itself, is the best avenue to pursue at this time. I was already convinced that
was the route that I wanted to take first, so I am glad that the doctors and I
are of one accord.
It’s
hard talking to the doctors about cancer and cure rates and life expectancy.
The doctors believed in March of 2010 that I wouldn’t live more than five years
and that most-likely my cancer would come back quickly even once it was resected.
I’ve been “cancer-free” for over a year now. It is debatable as to whether or
not the MDS can be considered a form of cancer, some medical professionals do and
some don’t. Initially, in talking with the doctors, I just felt like all they
had to say was doom and gloom. In talking with the specialist I realized that
this was a little more serious than I originally thought. This will turn into Acute-Myleoid Leukemia,
so they say, eventually without the Lord’s intervention in giving me yet
another miracle. My mother died of AML at the age of 42.
My Thoughts on
All This Health Stuff:
Leaving
the doctor in Gainesville that day, I had the overwhelming feeling that I
should just take off and travel, I really didn’t want to go home and face chemo
and being sick and all that another diagnosis entailed-again. Yes, this is
scary for me, not because I don’t trust the Lord, not because I am insecure
regarding my eternal future, but because I have a son to raise; a son that has
only ever known one parent. I want desperately to not only raise this child,
but to be there for him in adult hood. I can’t tell you how deeply I miss
sharing things with my mother now. How often I wonder what our relationship
would be like, how frequently I wish I could just call her, visit or chat on
the phone. However, I would be happy at this point to just have these next six
years to raise my boy; to spend cherishing moments with him. I beg for more
time, but in the end I know that God’s plan far exceeds mine and I do pray His
will be done. I think the most difficult; the scariest part of parenting is
imagining life without your child or leaving your child behind. It is a reality
that is ever present in my mind this going on to my eternal home and the young
man staying behind. I don’t know how to rectify that. I don’t know how to
completely release this Goliath fear of mine and hop on onto the mountain of
reckless abandonment in trusting the Lord. I’m just hopping through this
journey day-by-day praying for enough light to show me the way.
I
am going to digress here; I have really struggled with some big things over the
last year. I’ve wrestled with spiritual issues, quietly carried a broken heart
and spirit and asked the Lord again and again why He allowed me to live when
there are others I know personally that went home to be with Him. I know that I
don’t deserve to be here, but grace is getting what we don’t deserve. Still, I
feel like I am living on borrowed time. I so often fail. MAJORLY. I disappoint
myself and Him daily. I’m not a great Christian or even a good person.
Honestly, I dislike myself most days. About a week, maybe two, before I was
diagnosed with MDS a dear friend recommended the book 1000 Gifts by Ann Voskamp to me. It was impressed upon me to immediately
purchase this book. As a matter-of-fact, she sent me a text and the minute I
read it I picked up my Kindle to search for the book and see how much it was.
It was only $3.99 at the time, so I purchased it right away and began reading
it that day. This book is all about gratitude and living with the purpose of
seeking to be thankful in all circumstances. I was awashed anew with Christ’s
love for me as I read through the pages of this book. It then occurred to me,
actually it was more like a huge neon sign constantly flashing in my mind, that
I had forgotten to be grateful. How could I? After all He has done? After all
He has brought me THROUGH? I was reminded of when I was first diagnosed and I
made a list of my many blessings. I always meditated on this passage of
scripture
“ Finally, brethren, whatsoever things are true,
whatsoever things are honest, whatsoever things are just, whatsoever things are
pure, whatsoever things are lovely, whatsoever things are of good report; if
there be any virtue, and if there be any praise, think on these things.”
Philippians 4:8 and then purposed to constantly seek those things in
which I should think on. Sin took me away from my focus. I am so thankful for
my dear friend that recommended this book, 1000Gifts, which God used to bring my life back into focus. I can’t tell you
what a difference the challenge of ever counting gifts has made in me mentally,
spiritually and emotionally. It is like the difference between life and death.
In
the past few months since I have read the book I’ve felt release, renewal and
revival. I’ve been constantly reminded that the doctors don’t know everything
and the Lord is still in control and on His throne working to complete the work
that He began in me.
Treatments:
My
first round of chemo was June 24-July 1st. I’m praising the Lord
that this time all the chemo is outpatient. The transfusions last about 1 ½-2
hours and I go every day for 7 days. I started feeling it by the sixth day and
felt extremely fatigued and like I had major brain fuzz (I don’t really know
how to describe this feeling; dizzy, fuzzy, weird, not myself, out of my mind,
disconnected from my body?) from about June 30th-July 11th.
About 12 days straight. All in all it wasn’t too bad in comparison with what
chemo was like last time. Still though, it is a huge adjustment that requires
me to slow down. I was perhaps a bit too hopeful that I would carry on as
normal in going through this and therefore have pushed myself too much to have
a “normal” lifestyle. I start the next round on the 23rd of July. I
am praying and hoping that this next week will be a really good week for me,
but honestly the past few days haven’t. The brain fuzz has cleared up a bit,
but now some other issues are surfacing.
Detailed Prayer
Request:
I
hate to complain when things could be so much worse, but I do really need to
ask for prayer for myself and my son. I am having a really hard time adjusting
to "chemo life" again. I'm finding it's very hard to do day-to-day
things like cooking without getting really confused and making a disaster of
everything. Yesterday I exploded chocolate all over the kitchen, which was
actually kind of funny, but today I spilled about 1/2 gallon of milk everywhere
in the kitchen then slipped and fell really hard in it on my way to ask for my
son’s help to clean it up. Right now I am in so much pain. Every morning when I
wake up it is a surprise as to how I feel, so it's also hard to plan things.
Most of my friends probably think I am being incredibly flaky. I'm also having
insomnia pretty badly. It seems like every other night this past week I've not
been able to sleep until after 4 or 5 am. We are trying to get ourselves into a
structured routine to prepare for homeschooling in which we will start on
August 6th and now I am just really worried concerned about how I am going to manage
everything. I know that *I* can't manage, but it will be Christ’s strength
getting me through. I also know that I need to slow down even more, but like I
said, I just hate living a "sickly" lifestyle.
In
all of this, I know that I am so blessed though. My son is such a sweet, sweet
boy. He is blessing me in a way that blows my mind. He helps so much and is so
kind and loving to me when I get upset because I've done something silly like
spill the milk. Whoever said you shouldn't cry over that apparently never
spilled really expensive raw, organic milk and cream that they were going to
use to make their sweet child ice cream with. Or breast milk, not that I've
spilled any of that recently... Anyway, last time I went through chemo I
couldn't even care for myself. This time I can, and for that I am SO grateful,
but I am learning that I just can't do quite as much as I had been doing; this
would seem like a no-brainer, I know, but keep I mind that I have slowed down
considerably since about February because of the fatigue that I’ve been dealing
with. I am so grateful for so many things, even for this trial because the Lord
has already blessed me in ways I can't describe or wouldn't have been blessed
if I hadn't gotten "sick" again. I am just asking for prayer to do
what is necessary and to know when to rest, to learn how to care for myself
during chemo and how to mother my son in a way that teaches him about life
during this storm and trusting the Lord, to allow the Lord to work in my heart
and life and trust Him with my days- even when I spill the milk, burn dinner,
fall many times or land myself in the hospital-again.
What Else is
Going on You Say?
Now
that I’ve got all that off of my chest I hope to blog more frequently. I seem
to be having so many thoughts lately and need the therapy that writing offers.
Funny thing is that I actually just sat down on Facebook to type out a prayer
request to a prayer group that I am a member of and it became so long that I
brought it over to a Word document and just kept typing. Word says I’m on page
5. Figure I’ll turn it into a blog post at this point! If you’ve read this far
thank you! Leave me a comment so that I can thank you and pray for you
individually!
Some
of you may know that I became a Pampered Chef consultant in October of 2011. I
love TPC and I’ve enjoyed my business so thoroughly. Unfortunately, I had to
begin taking a step back in April due to my health. I haven’t been doing any
shows aside from a catalog show here or there. That is probably for the best
considering my confusion cooking in my own kitchen and the disasters I keep
having. I miss it though and I am praying that once I get another round or two
of chemo under my belt and know more about what to expect in the way I respond
to the treatments that I will be able to at the very least schedule two in-home
shows a month.
In
January the Lord began working on my heart regarding my son’s education. He has
attended a Christian private school since 1st grade and he just
finished up with 6th grade. I have two good friends whose eldest
sons graduated high school this year. That coupled with my health challenges
and the Lord’s persistence has lead to me making the decision to homeschool. It
is a terrifyingly awesome journey that we are going to embark upon. I knew from
the beginning that the idea was completely of the Lord and the more I plan,
research and discuss it with my son the more I am convinced that this is
completely of the Lord. This may very well be the best decision aside from
salvation that I have ever made for our family. I am so very excited to have my
DS home with me every day and to have the great privilege of home educating
him. The same good friend that recommended 1000
Gifts to me (she’s really awesome & smart!) turned me onto Charlotte
Mason. After doing some research I determined that her methods are exactly what
I envisioned for our homeschool adventure. Reading Charlotte Mason’s writings
have been so incredibly convicting and eye opening for me. I’m enthralled with
her philosophies and challenged in a way I have never been. I honestly think
any parent could benefit from reading her 6 Volume work, not that I’ve read all
6 yet-but I am telling you they are some of the best child rearing books I’ve
ever read! We’ve got all our books and curriculum planned and purchased and we
will begin school on August 6th. If we didn’t have so much going on
the next two weeks I would start tomorrow. DS is excited, or as excited as a
12yo boy who has had a traditional education thus far can be to start school ;)
I just can’t wait to see how he grows this year. I can’t wait to see the love
of learning spark in him and to share such an amazing experience with him. I’m
pretty excited about learning right along with him!
DS
started sailing camp at the local marina last week. It is daily from 1-4 and
goes through next week. He is loving it! The boy loves to sail and is well on
his way to becoming a “salty sailor!” Once sailing camp is over we will have
VBS at church. I am praying that I can help out again this year. I will have
chemo that same week, so I would appreciate your prayers there as well. After
that it will be August! Where does the time go? It’s amazing how we blink and ½
a year is gone.
The formatting went all wonky when I pasted this into blogger. Oops, don't know what went wrong there! Sorry for the super long post!
Stay tuned for counting days of gratitude... won't you count with me?
<3 Jill
The formatting went all wonky when I pasted this into blogger. Oops, don't know what went wrong there! Sorry for the super long post!
Stay tuned for counting days of gratitude... won't you count with me?
<3 Jill
Tuesday, May 15, 2012
7. Clarity
I've partaken in the challenge to count to 1000. 1000 gifts. 1000 blessings. The opening of my eyes wide to the beauty of life and the world and those around me. Today as the doctor delivered yet another diagnoses, as the words ran together and blurred in my mind and I began to lose my grasp, in an instant, everything came into focus. 7. Clarity. That I was coherent this time. That I understood this time. That I was able to call my closest friends and family this time. That I can see the blessing, the good. That I know this is just a bump in the road. Clarity. Perspective. Both blessings in which I am still praising Him for. Everyday I will count these gifts. I will continue to 1000. And when I lose my focus, I will look back on the list to recount these things. Phil 4:8. I will think on these things.
This is what I know:
~I have been diagnosed with Therapy-Related Myelodysplastic Syndrome.
~This is a disorder that is a direct result of the harsh chemo that I received during my cancer treatment.
~I am NOT dying. I do NOT have cancer. I do NOT have leukemia.
~However this can be a precursor to leukemia. It is rare for people to have this disorder after receiving chemo. As a matter of fact, less than 5% of people end up with this. It would seem that I have a genetic pre-disposition that prevents my cells from regenerating properly as evidenced by the fact that my mother went through something very similar. I would bet that she had this and never knew it and, therefore; untreated it became leukemia. The good news is that with my screening every three months, this has been caught in the early stages.
~In a nutshell, my bone marrow was so damaged from the chemo that it is not producing enough healthy blood cells. Good news is that I am not producing BAD blood cells either. This has caused me to have progressive pancytopenia- basically all of my counts are VERY low. This explains the severe fatigue that I have been experiencing the last several months as well as a few other things.
~There is a treatment for this disorder. It requires chemo. The chemo will not be as bad as last time. On a scale of 1 to 10, 1 being the mildest chemo they can give and 10 being the most intense, last time I received somewhere between an 8-10 depending on which chemo was being administered at the time. This time it will be more like a 3-5. This means I should be able to care for myself and Jarred which is very important to me. As a matter of fact, I told the doctor that if I had to go through anything like last time, I did not want chemo. He has assured me that it will not be like that. Actually, the see this more commonly in people aged 50-60 and they do quite well. They don't get sick and are able to carry on alright. Considering that I am much younger that is working in my favor. I may not even lose my hair, but that is the least of my concerns. I can do bald. I can't and won't do sick and incapable of caring for myself.
~I need to go to Gainesville to meet with a specialist in this very area. I will hold off on doing this until my son is done with school.
~In the meantime, I have labwork, some doctor appts and some possible transfusions of blood and platelets.
~I go back to the doctor on May 23rd to begin formulating a game plan.
As always, your prayers are much appreciated. I do know this is well: God is in control. This certainly didn't take Him by surprise. I trust Him with my future implicitly. I am not worried, stressed or scared.
His grace and peace amazes me. I don't know why it still takes my breath away. I've been here. I know the valley well. It seems to be in the valley where I flourish and I am OK with being here again. I hope that when I do come THROUGH this valley that I will be strong enough this time to stand on the mountain without losing sight of all the beauty, miracles and grace that surrounded me in the valley. Tonight as I pillow my head, I will sleep the deep sleep of peace in my Father, for I know that He has me in His hands and there is no better place to be.
This is what I know:
~I have been diagnosed with Therapy-Related Myelodysplastic Syndrome.
~This is a disorder that is a direct result of the harsh chemo that I received during my cancer treatment.
~I am NOT dying. I do NOT have cancer. I do NOT have leukemia.
~However this can be a precursor to leukemia. It is rare for people to have this disorder after receiving chemo. As a matter of fact, less than 5% of people end up with this. It would seem that I have a genetic pre-disposition that prevents my cells from regenerating properly as evidenced by the fact that my mother went through something very similar. I would bet that she had this and never knew it and, therefore; untreated it became leukemia. The good news is that with my screening every three months, this has been caught in the early stages.
~In a nutshell, my bone marrow was so damaged from the chemo that it is not producing enough healthy blood cells. Good news is that I am not producing BAD blood cells either. This has caused me to have progressive pancytopenia- basically all of my counts are VERY low. This explains the severe fatigue that I have been experiencing the last several months as well as a few other things.
~There is a treatment for this disorder. It requires chemo. The chemo will not be as bad as last time. On a scale of 1 to 10, 1 being the mildest chemo they can give and 10 being the most intense, last time I received somewhere between an 8-10 depending on which chemo was being administered at the time. This time it will be more like a 3-5. This means I should be able to care for myself and Jarred which is very important to me. As a matter of fact, I told the doctor that if I had to go through anything like last time, I did not want chemo. He has assured me that it will not be like that. Actually, the see this more commonly in people aged 50-60 and they do quite well. They don't get sick and are able to carry on alright. Considering that I am much younger that is working in my favor. I may not even lose my hair, but that is the least of my concerns. I can do bald. I can't and won't do sick and incapable of caring for myself.
~I need to go to Gainesville to meet with a specialist in this very area. I will hold off on doing this until my son is done with school.
~In the meantime, I have labwork, some doctor appts and some possible transfusions of blood and platelets.
~I go back to the doctor on May 23rd to begin formulating a game plan.
As always, your prayers are much appreciated. I do know this is well: God is in control. This certainly didn't take Him by surprise. I trust Him with my future implicitly. I am not worried, stressed or scared.
His grace and peace amazes me. I don't know why it still takes my breath away. I've been here. I know the valley well. It seems to be in the valley where I flourish and I am OK with being here again. I hope that when I do come THROUGH this valley that I will be strong enough this time to stand on the mountain without losing sight of all the beauty, miracles and grace that surrounded me in the valley. Tonight as I pillow my head, I will sleep the deep sleep of peace in my Father, for I know that He has me in His hands and there is no better place to be.
Friday, March 30, 2012
It Doesn't Matter
This is something that I wrote in the wee hours of the morning. There is a lot of back story as to what led me to write this NOW, which I may share one day, but I think that any one that has followed my blog the past couple of years will understand :) I hope you like it!
It Doesn’t Matter
It doesn’t matter that this is not what I had planned because this is what You have planned for me…
It doesn’t matter that I’ve been broken into shards because I’m picking up the pieces and giving every one of them to You…
The disappointments, all the hurt and all the pain no longer matters because You’ve let Your love and grace rain down and wash me clean once again…
It doesn’t matter where I’ve been it only matters that I will follow…
It doesn’t matter what it takes to get me to open my eyes and see the truth, to see Your light, to feel You here right by my side…
It doesn’t matter what it takes I’ll go through it all again just to feel You near, to know Your love never fails and You’ll never let me go…
And as You permeate my soul it doesn’t matter what You had to take away…
Because now Your beauty is everything I see, the gift You have given to me is far beyond anything I could have hoped for…
So Lord, take it all, all of me, all the broken pieces you see and make me holy…
Aside from you, my Lord, my God, it doesn’t matter…
I trust you, Lord
I love you, Lord
Lead me, Lord
Copyright: Jillian Arnould 2012
Copyright: Jillian Arnould 2012
Wednesday, February 15, 2012
Where Does The Time G?
Goodness, it's February already? Well, time just flies by quickly!
I know that I promised to try and update y'all daily on my progress with the leg, but life has gotten hectic - in a good way- and honestly, I didn't think you all wanted to hear what's really going on in this head of mine :)
I want to say first, that I am so thankful to be at this part of the journey, I never take that for granted. I am very thankful for the gift of life I have been given. I went in for my 3 months scans again a couple of weeks ago and everything is still clear. PTL! Nothing concerning and I'll go back in April.
The leg has been a challenge, but I knew it would be. What it didn't know is that my pain level would increase as a result of wearing it and that it would be THIS difficult and exhausting not just physcially, but mentally.
I am working on wearing my leg daily, I have PT multiple times a week and right now my goal is just to wear it for longer periods of time and to put one crutch away. I am trying hard to focus on the big picture here. I know that I hate this, yes, I do HATE it, right now, but before long I will (so I'm told) not know how I did without this thing.
Ok, so there's my quick update for those of you wondering. :)
I know that I promised to try and update y'all daily on my progress with the leg, but life has gotten hectic - in a good way- and honestly, I didn't think you all wanted to hear what's really going on in this head of mine :)
I want to say first, that I am so thankful to be at this part of the journey, I never take that for granted. I am very thankful for the gift of life I have been given. I went in for my 3 months scans again a couple of weeks ago and everything is still clear. PTL! Nothing concerning and I'll go back in April.
The leg has been a challenge, but I knew it would be. What it didn't know is that my pain level would increase as a result of wearing it and that it would be THIS difficult and exhausting not just physcially, but mentally.
I am working on wearing my leg daily, I have PT multiple times a week and right now my goal is just to wear it for longer periods of time and to put one crutch away. I am trying hard to focus on the big picture here. I know that I hate this, yes, I do HATE it, right now, but before long I will (so I'm told) not know how I did without this thing.
Ok, so there's my quick update for those of you wondering. :)
Tuesday, January 10, 2012
Day #5
This morning I had an appointment with my prosthethis at 8am. I put on my leg at about 7:30am and we left the house to head towards FWB. After being so discouraged over the weekend and perhaps being a little hard on myself, I am so glad that I had an appointment today. When I spoke with Dr. Jack yesterday he was so understanding and encouraging. He truly is a compassionate man and I am so thankful that the Lord once again provided me with a doctor with such expertise!
At the appointment he assured me that I was progressing well and made some adjustments to the brim of my socket. He suggested that I take it a little slower, but also urged me to ensure that I do wear my leg daily. My original plan was to come home and take my leg off, rest up, get it back on and go pick J up from school and take him to a Dr's appointment. I had so many errands to run and also had the chance to catch up with my sweet friend over lunch. It dawned on me on the way back from FWB that if I loosened the strap of velcro that fastens the socket it would relieve the pressure and pain that forces me to take the leg off. Of course, I can only do this while sitting or driving. Which is the perfect time to do so. It enabled me to keep the leg on for 8 1/2 hours!! Of course, the last hour or two I was literally dragging my leg, lol, but I made it through and I don't feel terrible..... yet.... Ok.... well when I got home and took the leg off I pretty much stayed on the couch the rest of the night. It's 10:30pm and I am quite sore. But it is manageable. I don't feel like giving up and I know that tomorrow I will put it back on :)
I start PT tomorrow at 1pm. Please pray for me! I know they are going to work me hard!! I am looking forward to it. I'm looking forward to the challenge, the extra exercise and receiving some training consistently.
I am going to finish a cup of tea and watch Downton Abbey, my new favorite show! Have a great night! I know that I will be resting well indeed!!
At the appointment he assured me that I was progressing well and made some adjustments to the brim of my socket. He suggested that I take it a little slower, but also urged me to ensure that I do wear my leg daily. My original plan was to come home and take my leg off, rest up, get it back on and go pick J up from school and take him to a Dr's appointment. I had so many errands to run and also had the chance to catch up with my sweet friend over lunch. It dawned on me on the way back from FWB that if I loosened the strap of velcro that fastens the socket it would relieve the pressure and pain that forces me to take the leg off. Of course, I can only do this while sitting or driving. Which is the perfect time to do so. It enabled me to keep the leg on for 8 1/2 hours!! Of course, the last hour or two I was literally dragging my leg, lol, but I made it through and I don't feel terrible..... yet.... Ok.... well when I got home and took the leg off I pretty much stayed on the couch the rest of the night. It's 10:30pm and I am quite sore. But it is manageable. I don't feel like giving up and I know that tomorrow I will put it back on :)
I start PT tomorrow at 1pm. Please pray for me! I know they are going to work me hard!! I am looking forward to it. I'm looking forward to the challenge, the extra exercise and receiving some training consistently.
I am going to finish a cup of tea and watch Downton Abbey, my new favorite show! Have a great night! I know that I will be resting well indeed!!
Actual Day #4
Since I didn't wear my prosthetic on Saturday or Sunday due to pain, etc. I am not going to be counting them. Therefore, Monday, January 9, would have been day #4.
I was hesitant to put on the leg after all the pain and soreness that plagued me in the previous days, but after much urging and encouragement from my prosthethis I went ahead and put it on around 2pm. I wore the leg until 4pm. I did some light housework while wearing and some work from the computer as well, so it wasn't overly exhausting.
After taking a break for a few hours I put it back on in the evening and was only able to wear it for an hour. I hated to take it off so early, especially after regressing over the weekend, but I had to do what I had to do.
It was a better day all and all. It helped a great deal that I hadn't worn it for two days, so the pain and soreness had subsided.
It is of utmost importance that I wear my leg everyday, even if I can't do it for long, I must just put it on.
I was hesitant to put on the leg after all the pain and soreness that plagued me in the previous days, but after much urging and encouragement from my prosthethis I went ahead and put it on around 2pm. I wore the leg until 4pm. I did some light housework while wearing and some work from the computer as well, so it wasn't overly exhausting.
After taking a break for a few hours I put it back on in the evening and was only able to wear it for an hour. I hated to take it off so early, especially after regressing over the weekend, but I had to do what I had to do.
It was a better day all and all. It helped a great deal that I hadn't worn it for two days, so the pain and soreness had subsided.
It is of utmost importance that I wear my leg everyday, even if I can't do it for long, I must just put it on.
Saturday, January 7, 2012
Day #4
Went to bed early last night. I was in a good bit of pain. I was so excited to have no alarm on Saturday.
4am: Woke up. Lots of pain, muscle spasms and cramps. So much for sleeping in. Up from 4-9ish in lots of pain. Fell asleep and woke up at 1pm. Oops. This is taking a lot out of me apparently.
Muscle pains, spasms, exhaustion=No leg today.
Trying again tomorrow.
4am: Woke up. Lots of pain, muscle spasms and cramps. So much for sleeping in. Up from 4-9ish in lots of pain. Fell asleep and woke up at 1pm. Oops. This is taking a lot out of me apparently.
Muscle pains, spasms, exhaustion=No leg today.
Trying again tomorrow.
Day #3
Today I am scheduled to wear my leg for a total of four hours. I went ahead and put it on this morning at 10am. It was a bit easier to get on this morning, I guess I am beginning to get the hang of getting into it and it went on fairly quickly. I didn't time it, but I'm thinking that it tool about 5-10 minutes.
I have my first show of the year tonight, so I have a good bit of work to do around the house in order to prepare. That means there was not much time for sitting or taking it easy while wearing the prosthetic. So, I got in the kitchen for a little over an hour and washed the dishes, cleaned up and made brownies. After that I was hurting a good bit so I decided to sit while the brownies were baking and get some work done from my computer. After 1 1/2 hours I was so ready to get it off! The last half hour seemed to barely creep by. Finally I got to take it off at 12!
Have I mentioned how great it feels to take that leg off? Soooooo good!
I was in an awful lot of pain after I took it off, so I thought I would just lay on the couch and rest. There was still so much to get done, but I knew I couldn't go hoppin' around the house right away. I totally fell asleep and woke up at 1:45!! Oops!
Put the leg back on at 2:30.... it's 2:50 now and I want it OFF!!! Going to push through... Gotta run to pick up Jarred from the bus stop, swing by the grocery store, come home and finish making a trifle then pack everything up for my Pampered Chef party tonight. I have to wear the leg until 4:30. I can do this...... Phil 4:13.......
Came home to finish getting ready for the party. So much to do and the leg was hurting and in the way. 4pm: took it off. I'm done.
This is not easy.
I have my first show of the year tonight, so I have a good bit of work to do around the house in order to prepare. That means there was not much time for sitting or taking it easy while wearing the prosthetic. So, I got in the kitchen for a little over an hour and washed the dishes, cleaned up and made brownies. After that I was hurting a good bit so I decided to sit while the brownies were baking and get some work done from my computer. After 1 1/2 hours I was so ready to get it off! The last half hour seemed to barely creep by. Finally I got to take it off at 12!
Have I mentioned how great it feels to take that leg off? Soooooo good!
I was in an awful lot of pain after I took it off, so I thought I would just lay on the couch and rest. There was still so much to get done, but I knew I couldn't go hoppin' around the house right away. I totally fell asleep and woke up at 1:45!! Oops!
Put the leg back on at 2:30.... it's 2:50 now and I want it OFF!!! Going to push through... Gotta run to pick up Jarred from the bus stop, swing by the grocery store, come home and finish making a trifle then pack everything up for my Pampered Chef party tonight. I have to wear the leg until 4:30. I can do this...... Phil 4:13.......
Came home to finish getting ready for the party. So much to do and the leg was hurting and in the way. 4pm: took it off. I'm done.
This is not easy.
Thursday, January 5, 2012
Day #2
Well, today went much better! I've just resolved to put on the leg and wear it regardless of how I feel about it. Today I wore it for a little over three hours. I was scheduled to wear it fro 1 1/2 hours twice. I didn't have much scheduled to do away from home today. I was supposed to go out to San Destin for our Pampered Chef back to business meeting and my amazing Director graciously offered to come here. That was such a blessing and a relief.
So I put on my leg early this afternoon and wore it for about 1 1/2 hours. I didn't do much. I sat down and did a good bit of work on my computer, fixed myself lunch and then I walked carrying my plate and glass to the living room to eat. I guess that wouldn't sound like much of a big deal to most people, but it was a huge deal to me. I also decided that today I would put the crutches down and just walk around without them. I know that I am bound to fall and am not scared of doing so, I mean it's gonna happen eventually and happen more than once. Well, anyway, it was way easier not to have them to contend with. When it is just me here it is easier to focus so I feel comfortable doing that. When there is a lot more going on then I need to use them for now. Or when I'm out in public. So, after my time was up I took it off and all was fine.
I ended up putting it back on around 5ish and wore it until about 7ish. I cleaned up the house a little, cooked some dinner and just stood up for a while to get used to putting weight on that side. We had dinner and by that time I was more than ready to take it off. I don't feel like I am in an incredible amount of pain today. I mean I'm sore.... really sore.... but it is tolerable at least.
I start physical therapy next week. I don't know yet how often I will go. I am hoping a lot so that I can get this down quickly.
Well, that's today's news. It was a better day. I can feel your prayers. Thank you. I am hoping tomorrow will be even better. I have a PC party tomorrow night, so I guess the question is do I wear it there or not? Probably not. We shall see though :)
So I put on my leg early this afternoon and wore it for about 1 1/2 hours. I didn't do much. I sat down and did a good bit of work on my computer, fixed myself lunch and then I walked carrying my plate and glass to the living room to eat. I guess that wouldn't sound like much of a big deal to most people, but it was a huge deal to me. I also decided that today I would put the crutches down and just walk around without them. I know that I am bound to fall and am not scared of doing so, I mean it's gonna happen eventually and happen more than once. Well, anyway, it was way easier not to have them to contend with. When it is just me here it is easier to focus so I feel comfortable doing that. When there is a lot more going on then I need to use them for now. Or when I'm out in public. So, after my time was up I took it off and all was fine.
I ended up putting it back on around 5ish and wore it until about 7ish. I cleaned up the house a little, cooked some dinner and just stood up for a while to get used to putting weight on that side. We had dinner and by that time I was more than ready to take it off. I don't feel like I am in an incredible amount of pain today. I mean I'm sore.... really sore.... but it is tolerable at least.
I start physical therapy next week. I don't know yet how often I will go. I am hoping a lot so that I can get this down quickly.
Well, that's today's news. It was a better day. I can feel your prayers. Thank you. I am hoping tomorrow will be even better. I have a PC party tomorrow night, so I guess the question is do I wear it there or not? Probably not. We shall see though :)
Wednesday, January 4, 2012
Day #1 With My Prosthetic
Since I have been so detailed in sharing my journey this far, I feel it is only right to chronicle this new journey with my prosthetic leg. I will try my best to update you daily for the first couple of weeks to let you know how I am making progress.
I picked up my leg yesterday and was so excited about it. I walked with it for over an hour at the Dr's office. He had given me a schedule for how often I am to wear the leg daily. I had to take it off before I left the office last night and so we threw it in the back seat, went out to celebrate and run some errands then headed home.
Once home, I put on some jeans I picked up at Sams-without even trying on and they fit! And I put the leg on of course. I walked around for a little while and decided I was tired and needed to put it away for the rest of the day. Dr. Jack told me that I would be really sore. That I would be working muscles over the next few weeks that I didn't even know I had. Boy was he right! By the time I got in bed last night I felt like I had had one hard workout.
I am supposed to wear the leg for two hours today, but break it up into one hour increments. Then I increase the time by half an hour everyday. Therefore, tomorrow I will have it on for 1 1/2 hour increments.
When I woke up this morning I was still really sore, so I decided to take it easy and put the leg on later in the day. I took it really easy because I was SO sore. Good grief. Anyway, I got really excited when I laid out clothes to wear. Pants, a pair of socks and a pair of shoes just brought tears to my eyes. Happy tears :)
Then I spent about 15 minutes trying to get A shoe on my left foot. I gave up and went to find another shoe that took about five minutes to put on it. Now, getting this leg on is somewhat similar to wrestling an octopus. I have to put my jeans on the left leg first, pull the leg over to me, try to get my right leg in the pants-making sure to put the right leg in the right pant leg-tricker than it may seem- and then get in the socket and try to pull everything together. I think it took about 30 minutes to do all that. By the time I got it on I was out of breath, uncomfortable and wanted to take it off and throw it down. I'm being honest here. I left it on though and finished getting ready then headed out of the house to pick up Jarred and run errands.
Ok, maybe running errands on day number one was not my best idea. But I promise I really didn't do THAT much. I just picked Jarred up from the bus stop, went to the bank, went to KMart and then stopped by a friends house. I think it was about 3:00pm when I put the leg on and then about 4:40pm when I took it off.... So yeah.... I wore it a little too long. I was in mid-sentence at my friends house when I stopped and said "Ive gotta go home and take this leg off!" I think I did a combination of hopping, dragging and walking to my car. I couldn't get home fast enough. I was ready to get that thing off it hurt so badly. I think part of the problem though is that I am not getting into the socket correctly. I didn't feel like it was fitting correctly or that I was in there all the way.
Now I am laying on my couch typing you lamenting the fact that I have to get up and cook. I really want to go to church tonight as well. I really want to put my leg on and wear it to church. But I really don't want to put my leg on. But I have to.
So yeah.... I know that this is supposed to be big and exciting and all those wonderful things and maybe I feel about an iota of that right now. Mostly though, I feel like that leg is hard to walk with and extremely uncomfortable. I really liked hopping around and have grown accustomed to things the way they are. The ease that I have getting here and there. Now this is just another adjustment. I know that I will get there. It is just not going to be easy. I can all ready see that there's going to be a lot of hard work, tears and determination in my future.
I'm hoping that before long this will become second nature to me. Today though, I really don't like that leg.
I picked up my leg yesterday and was so excited about it. I walked with it for over an hour at the Dr's office. He had given me a schedule for how often I am to wear the leg daily. I had to take it off before I left the office last night and so we threw it in the back seat, went out to celebrate and run some errands then headed home.
Once home, I put on some jeans I picked up at Sams-without even trying on and they fit! And I put the leg on of course. I walked around for a little while and decided I was tired and needed to put it away for the rest of the day. Dr. Jack told me that I would be really sore. That I would be working muscles over the next few weeks that I didn't even know I had. Boy was he right! By the time I got in bed last night I felt like I had had one hard workout.
I am supposed to wear the leg for two hours today, but break it up into one hour increments. Then I increase the time by half an hour everyday. Therefore, tomorrow I will have it on for 1 1/2 hour increments.
When I woke up this morning I was still really sore, so I decided to take it easy and put the leg on later in the day. I took it really easy because I was SO sore. Good grief. Anyway, I got really excited when I laid out clothes to wear. Pants, a pair of socks and a pair of shoes just brought tears to my eyes. Happy tears :)
Then I spent about 15 minutes trying to get A shoe on my left foot. I gave up and went to find another shoe that took about five minutes to put on it. Now, getting this leg on is somewhat similar to wrestling an octopus. I have to put my jeans on the left leg first, pull the leg over to me, try to get my right leg in the pants-making sure to put the right leg in the right pant leg-tricker than it may seem- and then get in the socket and try to pull everything together. I think it took about 30 minutes to do all that. By the time I got it on I was out of breath, uncomfortable and wanted to take it off and throw it down. I'm being honest here. I left it on though and finished getting ready then headed out of the house to pick up Jarred and run errands.
Ok, maybe running errands on day number one was not my best idea. But I promise I really didn't do THAT much. I just picked Jarred up from the bus stop, went to the bank, went to KMart and then stopped by a friends house. I think it was about 3:00pm when I put the leg on and then about 4:40pm when I took it off.... So yeah.... I wore it a little too long. I was in mid-sentence at my friends house when I stopped and said "Ive gotta go home and take this leg off!" I think I did a combination of hopping, dragging and walking to my car. I couldn't get home fast enough. I was ready to get that thing off it hurt so badly. I think part of the problem though is that I am not getting into the socket correctly. I didn't feel like it was fitting correctly or that I was in there all the way.
Now I am laying on my couch typing you lamenting the fact that I have to get up and cook. I really want to go to church tonight as well. I really want to put my leg on and wear it to church. But I really don't want to put my leg on. But I have to.
So yeah.... I know that this is supposed to be big and exciting and all those wonderful things and maybe I feel about an iota of that right now. Mostly though, I feel like that leg is hard to walk with and extremely uncomfortable. I really liked hopping around and have grown accustomed to things the way they are. The ease that I have getting here and there. Now this is just another adjustment. I know that I will get there. It is just not going to be easy. I can all ready see that there's going to be a lot of hard work, tears and determination in my future.
I'm hoping that before long this will become second nature to me. Today though, I really don't like that leg.
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