A Life Changing Emergency Kit (and post stem cell update!)

There are so many types of Emergency Kits.  If you've watched the news recently, you've likely heard frantic people talking about Earthquake Survival Kits. If you have children in school, you've probably sent an Emergency Pack for your child and have a First Aid Kit at home.  If you drive a car, I'm sure there's a spare tire hidden somewhere.  Even something as small as damaged eyeglasses are often prepared for with an Eyeglass Repair Kit stashed in a drawer.

But what about preparing for the all too common waves that are guaranteed to crash in the ocean of life at some point? Illness, loss of a job, death of a loved one...just to name a few.

I know a little something about this! When the waves of illness came crashing down on my life 5 years ago I was not prepared. I had a fantastic childhood, a great family & great friends and a rewarding career. Even having everything desirable according to society standards, I was not prepared for what came my way. Although I was able to offer an outward smile, many days were tainted by the internal struggles that led to night time tears. I never learned how to cope. There I was, in the biggest storm of my life, and no Emergency Kit. There was nothing I could cling to treat the fear in my heart and no bandaids for the hopelessness that ate away at my soul.  I relied heavily on my own strength, trying to awaken the "good attitude" I always had. It was isolating and exhausting.

I'm sure my ego preferred I avoid the vulnerability it took to call on God, to reach out to family and friends.  I chose a path that has taken more courage and humility to look honestly at myself. To make changes to my behavior and allow for change.

After several years of walking a tightrope and barely hanging on, I thought this can't possibly be my life now! There has to be something more.

I made many changes in my life over the last few years. The biggest change is I began going to church and eventually developed a relationship with God. That answered the question about "something more" for me and has forever changed the course of my life in the most miraculous way. I also invested more into relationships with people, making true connections. I started writing in a Gratitude Journal even on the days I took me hours to find something I felt thankful for.  I also got down to the basic foundation of modifying sleeping and eating habits. I grew tired of all the traditional doctors,tests and medicine so I found natural therapies such as Acupuncture to help during the more stressful time.  Little did I know I was building my very own Emergency Kit! One that would come in handy over and over. It is an Emotional/Coping Emergency Kit of sorts.  It's what I have clinged to for more than just survival, it has brought me to a life of joy again.

It is also more practically, what has kept me in a really good state of mind during a really terrible week!  After months of excitement building up to my Stem Cell treatment and experiencing a fabulous week of normalcy after the procedure, BAM! A Relapsing Polychondritis flare. A flare in this disease can mean many things, but for me right now, it means painful joints, muscles and tendons from head to toe, spine and neck pain leading to a headache, neurological symptoms such as twitches and more pain, loss of appetite, eye pain and inflamed, blistered cartilage in the ears. OUCH. That may all sound terrible and it certainly is, but thanks to my Emergency Kit, it's doable. Imagine adding a complete broken heart, lonliness, fear, insecurities and defeat!  In the past, those feelings would have been added to my already tough list of symptoms and consumed me.  I'm thankful that I have my Kit and that I've learned how to manage this illness in a way that allows me to enjoy life even on the worst days and I mainly just feel affected physically.  I'd be lying if I said I am never afraid. I feel the fire of fear often actually, but I have learned how to put out the flames quickly.

I was pretty emotional when I arrived at the doctor's office yesterday. I was in a lot of pain and the inflammation in my ears reminded me of a scary movie, worsening right before my eyes. I was disappointed in myself for feeling emotional, which made it a vicious cycle. I prayed and asked God for help, instinctively I asked Him to help me be okay with whatever His plan was. A peace quickly washed over me and we got down to business.

My doctor had a guest doctor visiting from Portland, a well respected Chinese Medicine Doctor/Naturopath so I was very fortunate. They both agreed I was in a flare that needed to be managed but that treating it naturally was ideal to allow the Stem Cells to keep working in the proper environment. They explained that the very cells that will be helping me are causing the flare. As long as we can control the flare, it's actually a GOOD thing. The cells are stimulating my immune system (although too much) and they'll soon learn their mistake and begin modulating my system. It's training ground for them in a sense and more common than not in treating Autoimmune Disease. He treated me with acupuncture yesterday and suggested that I rest for a few days in an effort to calm my system and avoid increasing any pharmaceutical drugs. My doctor said it will be a "saw toothed" approach with me. That means expected ups and downs as we work toward our goal, but at least with my Emergency Kit, the ups and downs should mainly be physical which is far more tolerable to me (and my family, lol!).  He expects if all things go well, my system will begin to regulate (partially) about 2-6 months post stem cells, so I have a ways to go! Since I'll be repeating the procedure one to two more times, it will be a long road but i'm ready! Well, maybe it's time to develop more patience - I could certainly add that to my Kit!

Are you prepared for the storms that will come in your life? You are far more likely to experience pain, loss and fear than experience a natural disaster so if you've taken care to prepare for the next Earthquake or broken eyeglasses, maybe it's time to evaluate how ready you are for anything else life can throw at you.

What's in your Emotional/Coping Emergency Kit?

The End of The Rope

Have you ever felt at the end of your rope? You know, the day that your child spills fruit punch on your new white couch, that cost of an unexpected car repair when the bank account is already dry, loss of a loved one, or something I know a little about...a new symptom or diagnosis that leaves you barely hanging on to that rope? Maybe it's physical pain or emotional pain that taxes you. There are endless ways we suffer in this thing we call life, but is it true that what really matters is how we respond to the suffering?

Robin Williams' suicide deeply affected me because although I don't suffer from chronic depression ( I suffer from a serious and progressive autoimmune disorder), I do understand it in some way. I understand the feeling of not being able to see beyond pain and fear - of reaching for anything to escape the feelings I didn't want and I say this with a tear in my eye - a life I didn't want. I want everyone, no matter your situation, to be filled with hope and I write this today in honor of Robin Williams and his loved ones.

As a highly independent gal, my symptoms and ultimate diagnosis really sent me to rock bottom. At that time it was hard to imagine the way it would change my life and the life of my husband and children. I was angry. "WHY ME?" I wasn't ready to give up life as I knew it and certainly wasn't open to my life going any other way than the way I had planned it for the last 40 years! I had some fantastic plans for myself, or so I thought.

Sitting home alone 5 years ago, processing what was happening to my body, I just cried. I didn't turn to God initially. Where did I turn for comfort? I turned to my husband. That went great for a while! We hugged, cried, laughed and talked about what was next. It all felt like a dream, very temporary at that time. Symptoms progressed and we soon were lost in an avalanche of doctor's appointments and medical tests that left me heart broken and scared with no answers (and left my husband thinking his wife needed a psychologist!)  It was an intense time that I still have a hard time thinking about, let alone sharing with others.  There were a lot of tears, a lot of arguing and a lot of both of us feeling helpless.

As things progressed, I realized I still had a role - I was a wife and mom. I had two toddlers who needed their mom. A husband who wanted the woman he married.  I began to get angry with God. That is how I first turned to Him - it was in anger. How can this be? You brought me the love of my life, gave me these miracles, two children who need a mother.   Why aren't you letting me be the wife and mom I want to be? WHY ME? 

With no real treatment for my illness and life continuing to move forward all around me, I just decided to keep on keepin' on. It was one day at a time, often one moment at a time. I would do my best to just blend in with the crowd and was always trying to find the next thing to guide me towards some real hope. I was rarely fully present, with the dark cloud of my illness shadowing me constantly.

When I didn't feel I could turn to my husband, I still had some great friends I would turn to and I always felt better after I talked to them. Talking with my friends was a band-aid fix though and we all know band-aids usually fall off. I am so thankful for my family and friends, but I needed more.  I should clarify that I have wonderful friends and a wonderful husband - it was just a very "un-wonderful" situation and time in our lives.   I'm a doer, so I mainly turned to special diets, meditation, guided imagery CD's and actually any alternative practice I could find that had promises of an ounce of hope for taking away my fear or ideally a cure. I remember searching on "Meetups" for any events that focused on healing, hope, health. I went to several and it never felt right. I was searching....searching....searching.  I would have stood on my head and ate bananas upside down if there was any hope in it!

I was raised by fabulous parents and had a great family life, but I was not raised in a Christian household. I was never taught to turn to God, but from a young age, in the privacy of my room, I often did. I didn't know what, when or why...I just knew that's where I would reach for comfort. I knew there was something bigger.

My husband and I decided to find a Christian church in the area and I really wanted to go! At the time, very honestly, I just wanted some peace that if I were to die, that I would get to see my family again. I know that sounds extreme,  but I needed to know that at the time. We began going to church and one day when I went alone, I broke down in tears. The sermon was about suffering and struck a chord with me - it was as if a small layer was peeled off, just enough for the pain to seep through.  I had an opportunity to spend some time with a wonderful woman after service and she too had a chronic illness. She lovingly shared her story with me and made it a point to share the unwavering hope she has because of her faith. We went over what it means to have a relationship with God and right then, we prayed together and I decided to continue a relationship with God, although I didn't fully understand what that meant at the time. I certainly didn't know I had just received the most amazing, perfect and valuable gift.  That was a few years ago and since then, God has continued to open my eyes. It has been a slow process, I guess I wasn't very cooperative in the beginning! This past year when I finally couldn't do it alone any longer, I truly called out to Him and He didn't disappoint.  I now know he mourns with me when I mourn, that He delights in impossibilities and that I don't need to be fearful of my health (or anything!) when I live my life according to His will.

Do I pray for healing? Yes. But I also know that if I pray and healing does not come, it's ok! God will use me and use my situation to encourage others and being able to do that is a blessing in itself.  I know God has the final say, not me. I do believe God can and sometimes does heal people in miraculous ways, but the Bible never says He will heal everyone who comes to Him, even in faith. He always wants what is best for us, but sometimes what's best may be physically and emotional hardships that drive us closer to Him.
 

 God met me at the end of my rope and has helped me climb back up to more than just safety. He took me to some very solid ground where I now live fully and with joy. Do I still have the same illness? Yes. The difference is, God has shown me the beauty of living my life with a purpose, of living my life to fulfill a purpose set out by HIM, not me. What or who do you turn to when you are at the end of your rope?  Did you know Jesus will meet you there?

John 16:24 - You haven't done this before. Ask, using my name, and you will receive, and you will have abundant joy.

195 millions stem cells...and some tears!

I was in the waiting room (Playfully called the Red Room and I'm guessing that has to do with the big red recliners in there!) after the liposuction part of the process, sitting back and peacefully soaking it all in while my husband dozed off next to me. There was alot to soak in after anticipating this day for months! Well, I wasn't literally sitting back because the doctor chose my backside for the liposuction. Ouch! The doctor peeked in with wider eyes than I had seen him express in the past and said he had an important picture I should capture. Without putting any thought into it, I followed him and his sweet nurse Sarah, back to the room. He showed me a piece of equipment, not much bigger than an iPad, and told me to take a picture of it. Then he had me zoom in on the numbers and take that picture as well.

I should mention my doctor is incredible at what he does and he is one of the kindest and most compassionate doctors I've worked with. He is also very gentle and soft spoken and I would not expect him to show a huge outward sign of excitement other than a kind smile, but definitely no cartwheels! After taking some photos, the conversation went something like this...

Doctor: "Linda, you produced 195 million stem cells!"  (That is in 50cc of fat)
Me: "Great!" (having no idea what that actually meant)
Doctor:  "That's a very good result!"
Me: "That's wonderful." (still not comprehending the significance)
Nurse: "That is amazing. Really fantastic!"
Me: "What do you mean? That's good? How so? What numbers do you normally see? I'm not sure I understand." I think that came out in one big blundered sentence because my thoughts were moving faster than my mouth could catch up to. I knew something amazing was happening...
Nurse: Putting her hands on my shoulders and looking directly in my eyes, "Linda, this is incredible. Really incredible. I am so happy for you." All through her tears. Lots of tears. It welled up inside me as well and the tears flowed. It was a pretty powerful moment that I will never forget.

They began to explain the numbers in more detail and I learned 195 million is the highest count they have ever seen, by millions. Sometimes they only see 20 million as a matter of fact. The significance is all those cells have a job to do in my body in upcoming weeks/months so I see it like this:  If you have a big job/project to complete, do you want the help of a small crew or a large crew? BINGO, a large crew! Well, I had those pure little cells all put back into my body via an IV to do a job  -  modulate my immune system. I am happy to announce I now have a very large crew of stem cells floating around and hopefully finding their targets over the next few months.

I found myself wondering, was it the daily wheatgrass shot? Did that make a difference? Afterall, I am anemic and have trouble producing enough red blood cells which could be a problem. Or, perhaps cutting out gluten really did help. That may make my diet worth it because I sure do miss my gluten! Then, could it be my age? That's a nice thought. Maybe being over 40 isn't so old afterall. My mind has been in a pretty good place so I wondered,  Hmmm...maybe the mind does have something to do with all this. Then I remembered the high dose vitamin C IV I received the day before. That could surely be it!  The doctor gave me the facts on my numbers but he couldn't put a finger on why mine were so high. "A combination of things" was his take.

I went back to the "Red Room" and my husband was still sleeping. I was processing what just happened while fixing my make up in the mirror (note to self, wear waterproof mascara on days like this), when the nurse walked back in and just hugged me, again through tears. She couldn't believe the numbers and being the weepy gals we were, my husband woke up and got the news. My very non weepy hubby was weepy by then as well. The nurse left and we prayed, thanking God. YES! We thanked God. We didn't thank the vitamin C or the wheatgrass, my age or my mind, we thanked GOD.

I laughed at myself for a moment, realizing I was looking at the wrong things to credit! Sure, that's all good stuff and I love what the wheatrgrass etc does for my body, but I have reached a point in my medical care where not a single decision is made by me without thoughtful prayer. Let me tell you, when dealing with chronic health issues and so many decisions on a daily basis, that thoughtful prayer has been such a blessing. It hasn't just been my prayers, especially lately. I am so appreciative of all my prayer warriors out there - those prayers are being heard!

God has been and is guiding my steps. Sooooo, if that wheatgrass had anything to do with it, well, God gets credit for it.  If the Vitamin C had anything to do with it, God worked that out too. As a matter of fact, I was suppose to receive an ozone treatment (oxygen) the day before but the doctor decided to do vitamin C instead.  He had very specific reasons for that change and I quickly prayed about it and agreed with the plan wholeheartedly. God gets credit for that too!

So, what do I credit for that stem cell army my body produced? I simply credit God because that was part of His plan.  I am hopeful for healing, but I am even more confident that God's plans will come to fruition no matter what. So, now we wait and see, continue to pray and seek God's guidance as we monitor results over the next few months...and, yes, I will continue the other parts of my care such as daily wheatgrass shots, as long as I feel God is guiding those steps as well.

Who is guiding your steps? It doesn't have to take something as serious as my situation to reach out and ask God for help. He is always there...waiting for you to call His name. The next time you find yourself saying "Thank God!" about anything, notice WHO you thanked. I've never heard anyone say "Thank Wheatgrass!". 

xoxo,
Linda

The Scoop on my Stem Cell Treatment and How I REALLY Feel About it...(It's in 4 days - eeek!)

Stem Cell treatments are changing the face of medicine!

This is an area I have thoroughly researched and some of the stories of healing are remarkable!  I am hearing many of the same questions as my procedure date approaches, so I thought I'd answer the common questions. I love talking with y'all so if anyone wants to learn more about anything mentioned here, you can comment on this page or message me privately.

If this is too much medical/technical reading, skip it all...and get to "How I REALLY feel about all of this". :)

What is Stem Cell Therapy?
Stem cell therapy is a strategy that introduces new adult stem cells into damaged tissue in order to treat disease or injury. Many medical researchers believe that stem cell treatments have the potential to change the face of human disease - it's very exciting research! The ability of stem cells to self-renew offers potential for generation of tissues that can potentially replace diseases and damaged areas in the body. Since your own stem cells are used, there is no chance of rejection. Did you know that stem cells can turn into any tissue they find that is damaged? (Ie - cartilage, muscle, etc)

How Can it Help Autoimmune Disease?
The stem cells harvested from a patient have the potential to replace countless cells of the body. These cells may heal the body in many ways but the goal in autoimmune disease (my situation) is to produce a healthy immune system response by regenerating healthy new cells that modulate the overactive immune system.

What is the Difference Between Stem Cell Therapy and a Stem Cell Transplant?
In an nutshell...
 - The "transplant" involves wiping out the faulty immune system with intensive chemotherapy and receiving donor stem cells, to rebuild a brand new immune system. Many risks with this one!
 - The "therapy" involves no chemotherapy! Liposuction is done to remove your own stem cells, they are harvested, then returned to your body intravenously. Minimal risk with this one!
There is MUCH more detail that I can share on this so please message me if you have interest personally.

How have I been preparing medically? 
I will be receiving Stem Cell Therapy, the more mild one. This includes a 4 week program of a special diet, vitamins, herbs etc based on my bodies specific needs. The day before the procedure I will have ozone therapy which is when pure oxygen is given to me intravenously. This not only lessens the burden on the body by killing the bacteria, viruses and other pathogens, but also oxygenates the tissues and increases circulation. Those valuable little stem cells need to be able to get to the right places to do their job!

What will the procedure be like?
My husband and I will be in San Francisco the day before for another ozone treatment which is similar to dialysis in a medical office. It's great time to chat with others going through the same thing and I really enjoy hearing their stories. We will stay the night in San Francisco (Thank you God, for my amazing parents that are coming to town to keep my little ones happy for the night!), and my procedure us at 9:00am Thursday morning. I will be awake for the procedure  - eeek!  The doctor will numb an area on my body  to do liposuction (Nope, I don't get to choose the area - lol!). Some fatty tissue will be removed, put in a harvesting machine to separate the stem cells and purify them, then they will be re-introduced to my body intravenously. Exciting stuff!  The procedure takes about 5 hours.  The main goal in my situation is for the cells to modulate my overactive immune system. I will need to do this procedure 3 times over the next 9 months.

How do I REALLY feel about all this? 
If I was asked that 6 months ago, I would have been a nervous wreck, feeling like the procedure was "my last hope". What a funny statement that is to me now! My hope is not in this procedure, my hope is in GOD!
He has lead me down a path lately that has given me more joy than being healthy ever did so I see now that I will be OK no matter what happens with the procedure. Sure, I want it to be the solution - of course I do!
I just know God's plans are way better than mine, so I trust the outcome will be what it is suppose to be. That sure takes some pressure off of me and being a worrier/planner/"type-A" personality, I can't even put into words how much that has changed my life. My relationship with God has given me:
 - Strength in my weakest moments
 - Freedom from worries
 - Confidence in my future
 - Comfort in my pain, both physical and emotional
 - A purpose
 - HOPE and so much more!
So, here's how I really feel about it:
 - Hopeful that it will be the answer for my physical healing
 - Thankful that this procedure is available to me and that we raised enough money to pay for the first one.
 - Thankful that I don't have to worry about the procedure, because God has it in His hands, including the outcome
 - Thankful that I can accept the pain and see God in the situation
 - Thankful that God's desires are now my desires
 - Thankful that God is allowing me to use this situation for good and leading me every step of the way!

In summary, I am excited about the procedure and very hopeful about what it can do for my health. I just get to sit back a little now and see what's in store since worrying is not on my plate anymore. :)

I'm looking forward to getting through this process over the next couple of weeks and getting back to living! God has given me a new childlike wonder that I wouldn't trade for anything! Many exciting things are in the works. For starters, we are launching a Christ-Centered Support Group for Women with Chronic Illnesses very soon so if you are in the Bay Area and know someone who can benefit from this, feel free to put them in contact with me! I am very excited that these meetings will be held at my church (http://www.nbcsj.org). The meetings won't start until a bit later in the year (dates TBD), but if you don't have a church home, come on by and say hi before then!

HOPE is available to everyone, no matter the situation. It's just sitting on your doorstep, waiting for you to reach for it! I know I'm holding onto mine with a very tight grip! :)

The Lord himself goes before you and will be with you; he will never leave you nor forsake 
you. Do not be afraid; do not be discouraged.  Deuteronomy 31:8

Thank you for being a part of my journey! Updates about the procedure will be posted here as well as on the FB page. Maybe even a video of some of the procedure so check back next week. Eeeek!

For all you prayer warriors out there, your prayers mean alot to me so thank you!
xoxo,
Linda