Scleroderma

Today I received my diagnosis. Scleroderma. The one autoimmune disease I really did not want to have.

What a statement, huh? Like I had a choice. These are my genetics. This is how I was designed.

I am okay with it... kind of... I think I'll go through stages of okay, not okay, then okay again. But I think that's normal. In many ways, today is the first day of the rest of my life. This will influence every decision I make. This will alter my lifestyle, forever.

I'll be doing a lot of research, and although I will post here, as it has already affected whatever blogging I was doing before... I plan to do a couple of new blogs as well.

I will be starting a blog meant as an online diary to my children. And I would like to have a fun lighthearted blog documenting my course through the disease through the eyes a fashion/lifestyle format. I would like to make Scleroderma look good! There will be some physical changes that occur, therefore I would like to get healthy, lose some weight, take care of my body, and get my inner-model on by designing and showing off all the beautiful ideas in my head.

Life is short people. We are here, and then we're not.

And whether it's a systemic autoimmune disease, or a car accident... we are here but for a moment.

My prayer is that I honor God, and that my faith endures. I cannot wait to meet him face to face. And if that's sooner than I ever intended then so be it. And my prayer is that I love my family. That I am the best wife and mother that I can be. I've had a rough 6 months or so... challenging things within myself, trying to figure out who I am and what I want... so much of that seems silly, and yet, so much of it seems very relevant.

We need to be purposeful with our time. With our kids. Oh, to take back all the moments in these 5 years that I wasted away online. Oh, to have the chance to be outside in the sunlight without a care. To go to the beach. Take a walk to the park. I messed up. You know? I know I did. But the time can be redeemed. What is lost can be restored. And I am going to make the most of every moment from here on out because who knows when my joints will begin to tighten and my skin begins to harden. Who knows how long until reflux and other digestive issues complicate even the simplest of situations. Who knows if my what we hope is a mild  presentation won't later develop into a severe case, drastically reducing the time I have left. Who knows?

But I will not become discouraged. I will not become fearful. I will continue to seek God and work through it all. God I ask that you grant me total healing, but if not in this life, then I look forward to eternity with you without pain or suffering. Without tears. And I will lead my children in the path of your righteousness. I want to be whole. I want to be free of every chain that hinders me. Make me clean again, O God.

Cleanse me with hyssop, and I will be clean; wash me, and I will be whiter than snow. Psalm 51:7 

I Make Sick Look Good

Here are some pictures of me and my boys at my 30th birthday party.

I'm sorry I don't have a picture of me with my husband :o(

Well, apparently, I am sick in these photos, but I didn't know it. 

Don't I make sick look good? lol 

I had been working out, eating right, thinking about training for a 5k... I felt awesome. Radiant even. This party was just 5 days before I left for a Women of Faith event. It was at that event that I had my first "attack" and spent hours in the ER. The next morning, and every day since, I have felt increasingly worse.

Sigh... I post tonight while wearing a 24 hour Holter monitor, also known as an ambulatory EKG device. My primary physician is a cardiologist, and with my sister's heart history and some of my symptoms she is being very thorough and getting a good read on my heart.

Last week I had an abdominal and pelvic ultrasound, both normal. As well as an MRI which revealed a cystic mass on my adenoids (ENT appointment is this coming Tuesday,) and some compromised discs in my spine. This had been suspected by my doctor years ago and I underwent physical therapy for it, but the pain never ceased. However, upon visiting with a neurologist today, he feels the disc material is not anywhere near a nerve, nor is it protruding enough to touch the spine itself... he feels the level of pain does not match what he is seeing on the MRI. From a purely neurological standpoint, he feels Fibromyalgia would be an appropriate diagnosis because of the global symptoms I am experiencing. However, he feels rheumatology is the next best step to rule Lupus (or other similar autoimmunes) in or out since I did test positive for antibodies for an autoimmune condition.

After Tuesday's appointment with the ENT I have a 9 day break until my Stress Echo test. And then nearly a month (provided nothing else comes up) before I do my nerve study with neurology, as well as labs for my follow up with my primary physician a week later, then rheumatology a few days after that. I am going to be a very busy girl. But I am going to do my absolute best to:

a) not bing or google every stinking symptom and convince myself that I'm dying

b) not wallow in self pity and hang out in my pj's all day or not take a shower

c) get dressed, wear makeup, do my hair, and strut my stuff ;o)

d) get my stuff in better shape by attempting to start yoga and cardio exercise again

e) focus all my available energy on finishing my handmade Christmas (pray for me, I'm in a lot of pain)

f) but first spend the first fruits of my energy on Jesus and my family :o)

And I'll let you know how it goes!

In the meantime... I reserved some blog titles that I think are hilarious and I'm working on some ideas for when i finally receive a diagnosis ;o)

God Bless you! Merry Christmas!!!

My new adventure... autoimmune disease

Hmmm... I had to say I couldn't go back to neutral in that last post, huh?

lol

No, really, I know better. I know better than to think for a moment that the new challenges we will be facing as a family have anything specifically to do with where my heart was at a few weeks ago. My heart was there because I foolishly led it there. I let it run wild, untamed, unkempt, and unchaste. I am discovering brokenness. Things realized in that place that I couldn't have known otherwise. So though I am thankful for the knowledge, I wish I could have chosen life instead. I wish I could have a purer testimony, but then I am but a sinner in need of a savior. I'm not the first to choose knowledge over life, and I won't be the last. I look forward to repenting for each decision as they are graciously unveiled to me, and as the opportunity is laid out for me to do so.

And though I will learn a lesson as I drag my heart back through the mud to be cleansed by Jesus, I know better than to say this next phase of my life is a punishment for where I was. It doesn't work that way. And if it does? So be it. He's got a different vantage point than me. My trust is in His discretion. He knit me together in my mother's womb. He knows how many hairs are on my head. He knew my name before the foundation of the world. This is the body He gave me. The DNA that writes my story. The same DNA that causes me to dance the way I do. To think. To dream. To smile. To laugh.

But it was also written with the script of autoimmune disease. Which one? I'm not sure. I tested positive on the ANA blood test (antinuclear antibodies). It tests for the antibodies present with inflammation, but specifically is used as a diagnostic tool for all things autoimmune.

My last post was the night before I was leaving for a Christian woman's conference. Women of Faith. I was so excited to go. Natalie Grant was performing, and I love her voice. At dinner before her concert, I had eaten a lot of food, I felt very full, however, long before I had expected to be, and so I kept eating. We were having a very emotional conversation about divorce and our upbringings... I looked down at my hands and they were blue. They stayed that way for nearly an hour. I was having trouble taking deep breaths and thought perhaps that I was having indigestion. Walking after dinner didn't help circulate my blood, instead I felt panicked, short of breath, a lump in my throat. When we got back to the venue, I became lightheaded and dizzy. I was brought to the on sight medics, who felt it was prudent to be brought to the ER. They ran blood, did an EKG, and a chest x-ray, but everything was normal. They diagnosed me as having a possible Raynaud's attack. Meaning, either due to cold or emotional stress my hands had turned pale and blue. And they felt the sight of it had sent me into an anxiety attack. However, what would follow in the less than three weeks since would make anyone more than anxious.

Within a few days, my hands felt very cramped doing tasks I had no trouble with before. Tying my shoes. Cutting food. Opening doors. But the pain wasn't just in my hands. It was radiating up my arms. It was in my feet and ankles. Then my knees. Every muscle felt tight. I felt very weak. Very tired. Then I started losing feeling or felt pins and needles, sometimes sharp knife like pain migrating through my body. And the anxiety like symptoms were not going away. Shortness of breath. Racing heart. Dizziness. This wasn't anxiety. A second visit to the ER would prove it, though the doctor wasn't aware when discharging me. I was discharged with having "multiple somatic complaints," which is doctor speak for "all in her head." And prescribed with ativan on a trial therapeutic basis. "If it works, it's anxiety." And while I was there, either to be thorough, or to appease me, the ER doctor started the rheumatological blood work, hoping it would be in by my follow up visit with my primary care 5 days later.

I walked into her office, my first visit with my new primary care, and I was completely taken aback. She was not what I was expecting. But I could tell, the moment the medical history interview began that I was in the presence of the only doctor who could help me. She validated every complaint. But only after telling me that I tested positive for Lupus. "But, it may not be Lupus," she said, as though the alternatives were any better. Apparently, there is no specific diagnostic test for any autoimmune disease. They look for antibodies and wait for symptoms, then make an educated guess. The only tell tale sign is the number of antibodies found. The higher the number, the more severe the autoimmune. She read a description, that I don't dare share with you now. I can't be sure I heard her say it, and will wait until more testing has been done.

But I knew. After watching my sister nearly die at the hands of her own autoimmune disease, just 7 years ago. And here I was, in this new office, before a new doctor, hearing the diagnosis of a possible autoimmune disease exactly 7 years to the day my sister was first admitted to the hospital. The day before Thanksgiving. She has Wegener's Granulomatosis, a very rare vasculitis that just 30 years ago was an automatic death sentence. Her first symptom? Migrating arthritic pain. But she beat it. There is no trace of it in her body today. They can't explain what has happened. This should have been with her, causing complications for the rest of her life. But it is gone.

Mine... not so much.

Pick an autoimmune, any autoimmune... Is it Lupus? Is it Rheumatoid Arthritis? Is it Scleroderma???

Please, Lord, please don't let it be Scleroderma.

I'll have to tell you more about why I fear that one more than any of them in my next post because I have got to give my hands a break.

But I need you to understand. I love the Lord, and my life is His entirely. This fear is a natural human response to what I am facing. I trust God. I know He heals. I know he can heal me. I also know, He doesn't always choose the kind of healing we want or expect. Sometimes, total healing comes in the form of being absent of the body and present with the Lord. And if that is my destiny, if I die at the hands of this thing, then it always was. And He is the same God in my illness as He was in my health. I'll just get to see him sooner than I had expected. And the vehicle might be a little more painful than I had hoped for.

What I am really struggling with is the thought of leaving my boys. But I will have to talk more about that next time. My tears are too many, and my fingers are too numb.

Will you share this adventure with me? Cry with me, fight with me, pray for me??

Please. Please do.

Do we teach others how they should regard us?

My friend believes we do. She told me recently that I was equally responsible for how I am regarded by my husband as he is for how he regards me. She would agree with this quote:

“Every man stamps his value on himself... man is made great or small by his own will.” - J.C.F. von Schiller

Now, I am obviously not saying this is true in abusive situations. I would never say to a victim that they have allowed themselves to be victimized. I am attempting to fit this possible truth into a much less dangerous or destructive example. What I am saying is, I believe I have made my own world small by not insisting it be greater. My last post was the beginning of expressing that belief.

And now, here I am. Itching to rediscover old dreams. Longing to know myself again. What has happened in nearly 2 months? Sigh... if only I could share it all with you. I will say that there are parts of me that have been reawakened in ways that inspire all kinds of exciting emotional turmoil. Elation. Fear of rejection. Comfort... followed swiftly by irrational, aching need. Pendulum of emotions. And every time I want off this ride I ask the keeper to flip the lever once more and there I go, swung from one extreme to the other. This level of experience, this odd state that I find myself in is not sustainable. Not healthy. Not wise. And has built the walls that existed between me and my husband even higher. For that reason alone I need to get off this ride so I can focus on whether or not the walls can be torn down. But I fear the alternative is unbearable for me anymore. I cannot go back to neutral. I need motion, but it needs to be in the right direction and with the right company.

I hope to someday explain myself further. For now, I continue to ask for your prayers.

Mediocrity vs Greatness... and why I fear being average

1) If you had a choice between the following, which would you choose?

1. mediocre marriage, mediocre life
2. mediocre marriage, great life
3. mediocre life, great marriage
4. great life, great marriage

2) In a situation between spouses where one wants greatness and the other wants mediocrity, who should compromise in order to find peaceful, contented ground?

3) Throughout history, women have inspired men to do all kinds of things. Some foolish. Some noble. The saying goes, "Behind every great man stands a great woman."
If that is true, is it possible for a woman to inspire a man to be great, without making him feel like he isn't already?
And, if so, how would you suggest she accomplish that in this day and age?

If you think this is deep, please don't give me too much credit. Read on to discover that I am as shallow as a puddle your child can walk through and not even get splashed by.

Our First Official Day of Homeschooling!

Our first official day of homeschooling went beautifully! We had our best friends over for a kind of co-op morning, as it helped with the logistics of their family's commitments, and afforded all of our littles an opportunity to enjoy some time together working with Montessori inspired activities. The above picture is our "family" sensory tub, filled with items that we eat together as a family, play with together, items that reminded my son about each member (including Harley's toy bone), and it just so happens that this is my very first sensory tub at that scale. I've done smaller versions, but this was big enough for both my boys to get into the night before! (I'd post the pic but I didn't realize Son2 was only in his diaper... just don't know how I feel about that.)

We also worked with these Three-Letter Words Flash Cards. I looked through them and pulled out a number of words that could relate to our family theme for the week, and I'll do the same for future units. I'm hoping they will segway nicely when we begin with sequencing cards.

We also watched the starter video to the "Your Baby Can Read" program. It was given to us by friends as they were preparing to move. I've only heard of one other family that actually used it, and they loved it. I had hoped to buy it at some point, but I am so glad that I waited! I'm sure it's worth the investment, but free is always better, right? ;o)

Because my friend's children were doing their own work, I had the chance to help with my God-daughter's math work sheets. She is a year older than my son, and I was expecting to see some differences between them when it came to her fine motor skills and busy work. Instead, what I witnessed were very similar skills, but of course with the maturity and creativity of a 5.5 year old intelligent little girl. First, I noticed she wasn't sitting straight, and instead was supporting herself by leaning on her elbows. I say elbows because she was also switching back and forth between her right and left hand as she was holding her pencil. Her hold was incorrect, which is often the case for kindergarten kiddos, but as I looked even more intently I saw a tremor as she pressed down to write. My son also has this kind of intention tremor, but his is throughout his torso as well as his arm.

Of course I shared my observations with my friend, and she is thankful that I did. We're planning on creating a Montessori-inspired, occupational therapy-inclined curriculum on Mondays that will allow both of our littles to focus on core strength, while developing their fine motor skills and leaving plenty of room for sensory breaks that will keep them from becoming too fatigued. I am really looking forward to researching this. I had intended to anyways for my own child, but now I have incentive to make it even more grand by including my God-daughter. I just get all geeked out like that. It's the ballet teacher in me, lol.

The day wasn't completely smooth, obviously. I was expecting a meltdown or two and got a kind of perma-melt for most of the day from Son1 who was very sensory sensitive. When he finally was able to calm down at bed time, he was able to express that he really loved having them here, and loves doing school at home. I told him all about Day 2 and he could hardly fall asleep he was so excited. We were going to be doing geography and science. Looking up our house and the houses of all our family and friends on google earth... and making tin-can phones with string.

Day 2 was a huge success! He always processes everything verbally/outwardly, so I heard many affirming comments and am feeling very pleased with our choice to do this. I know it won't all be like this. Of course it won't. But it is a very nice start to what I hope will be an indefinite adventure.

Thanks for reading about our first two days!

"Beloved, I'm Home!" ~ Homemakers Challenge

On my facebook profile Grace Flyingat Home I recently wrote a note describing the conversation I had with my husband a while back, about defining the levels of clean we would like to see in our home. I chose to use this conversation to complete Mary's Challenge from Day 3. Here is the abridged version of the levels (please follow the link to the note for the more descriptive version):

1. "Honey, I'm Home!" ~ Home should be neat and welcoming to my husband after a long day's work.
2. "Honey, So-and-so is coming over!" ~ Once a week I would like to have a completely clean home, worthy of company. (Much more involved than Level 1)
3. "Honey, can you help me with this?" ~ These are the Honey-do lists, the Saturday-off projects that happen on the occasion. Includes all prep and clean up and we should be doing at least one per month... together :o)

But as I read Day 7, and read Romans 8:20-21...

"Against its will, all creation was subjected to God's curse. But with eager hope, the creation looks forward to the day when it will join God's children in glorious freedom from death and decay."

...I was reminded of a thought I had last year that was a strong motivator to get my house clean. Mary and Martha had the opportunity to actually invite Jesus into their home. He walked in. He looked around. He walked through, and sat down. But if he came to my house, what would he think? And since he is already "in my house" because his Spirit is alive and present within my life... does it look like he is here? Is my home inviting to my guests so that they can see the fruits of the Spirit at work in everything I do? Is my home welcoming so that we can sit down without sliding unfolded clothes off the couch? Can I invite a girlfriend over and talk about matters of the heart over a cup of coffee without being distracted by the clutter closing in around us?

No. No, I can't.

So, I am editing my previous list. All three levels will now be subcategories of "Beloved, I'm Home!" And this is really a matter of the heart and the inspiration behind accomplishing the other list. This is about Colossians 3:23-24

"Whatever you do, work at it with all your heart, as working for the Lord, not for men, since you know that you will receive an inheritance from the Lord as a reward. It is the Lord Christ you are serving."

And then, we can live our lives graciously @ home, because we will be living with the truth that our Beloved is at home and welcomed within us.

 

I linked up over at Homemakers Challenge!

Be sure to read some of the other great posts that are linked up as well. This is a wonderful group of ladies!!!