Seeing and Celebrating

I am a firm believer in the promise that God will replace or restore what has been lost. Time. Strength. Love. Relationships. Purpose. Family. Friends. Joy.
I love the Scripture, "I will restore or replace for you the years that the locust has eaten." (Joel 2:25)
A close second, "what the enemy intended for harm, God has meant for my good." (Genesis 50:20)

At the moment I'm sitting here drinking iced coffee, watching a little HGTV and skimming Martha Stewart Living mag on my lap (the June issue, because I'm that behind, haha), and listening to my girl chatter away to her dollies through the baby monitor. Rare Momma recharge moment, and I love all of it- including and especially the full day we've had leading up to this little respite. Because it's still new to me after months and months of being too weak or sick to do this? Probably! But mostly because, for weeks now, I'm overwhelmed with the fact that that it's such a gift to have work to do, and strength to do it.
You don't realize how sick you were until you finally catch up from nine months of survival mode and realize: "I'm not a terrible cleaner, or home owner, or pack rat- I was just conserving energy that I needed to fight and survive!" :)
Grace for the self: so important.

Victory turns two on Friday. TWO! Where does the time go? Well, I know where most of this year went. Since last October (ten months ago) I've been in some crazy health circumstances. Thankfully, miraculously, wonderfully, the ITP crisis has been quiet - in remission as the doctors would say- hopefully completely Healed, I say- for weeks!
Now (because if it's too quiet, we'd be bored?) I'm facing a different kind of health issue. Urgent, but not critical. My liver enzymes have been elevated for weeks, and there's talk of rejection, biopsy, ruling things out, confirming other things... a bit frustrating in how cryptic and unavailable the Drs have been, and I haven't been able to speak with my actual hepatologist in weeks. August = vacay month it seems :)
I should be hearing the plan by tomorrow though, and it will be good to know what it is.

Despite this new challenge, I am overwhelmed with satisfaction at how well our little family not only survived the past ten months, but we thrived. And we are determined to keep thriving, no matter what we face in the weeks and years ahead.

Victory is turning two on Friday and I don't feel like I've missed one thing. God is so good. And my little girl is such a blessing. Earlier today she climbed up on a kitchen stool, turned on the faucet, and started rinsing dishes. I asked, "do you want to hand me those, you rinse and I'll load the dishwasher?" An emphatic, "Yeah!" was her response, and together we loaded the dishwasher. Pretty soon the sink was empty. This is her norm. Watching us do things around the house, and wanting to join in or take over and help. The joy she brings to our family is immeasurable.
My 23 month old is speaking in short sentences already. She jumps and dances and laughs, and has an incredible sense of humor. She sings. She lifts her hands sometimes during worship when we livestream church.
She is brilliant, watching something once and imitating it immediately, or days later, with attention to detail, and determination.
By the way... This is not a mommy brag post. This is not meant to make you think I have it all together. Oh boy am I still a work in progress. This is a brag post I intend to be pointing up to my amazing God. Every good thing, every gift, I just smile and look up...

I just marvel at how so many blessings can be wrapped up in one tiny person.

However: do not be mistaken. My girl is of course about to turn two, and showing all those parent-character-testing qualities as well.
[In fact I had to remind my girl at least three times while working on this post, that this is indeed naptime... she finally fell asleep... and now a quick twenty minutes later she's up. Win some, lose some :) ]

I look for the teachable moments- for her and for me- and smile at the end of each day. What a gift it is to be a mom. Especially after losing a baby four years ago, and when this little one was just two months old, being told the liver disease that ruined my first liver has returned. And this year of absolute craziness where in June my Hubs - the always believing for healing, never expressing worry, rock of our home- said (after I was out of the CCU and home from the hospital) he thought he was going to lose me.

Recently, many of my friends and acquaintances have been either announcing first pregnancies, or a second or third little one on the way. It can be easy to get sucked into a poor me, no fair mindset. We could not even think about trying to get pregnant again this year, as the implications of a pregnancy combined with ITP could have been devastating for me and a baby. We have to do such a balancing act of faith vs practical. Especially because I'm a big faith, "but God!" person.

I may never be able to get pregnant again. Or possibly, I shouldn't ever get pregnant again. If my liver doesn't shape up, the doctors will start telling me things like it is unwise and dangerous to be pregnant.
Where some couples only need to decide how many children they would like to have and how to space apart the pregnancies, we have to talk about things like, "is my body even capable of carrying another pregnancy? What if the ITP returned? Will colitis flare again like last time? What's my liver going to do? How will these meds affect the baby?" And that horrible question I learned to stop asking some time ago, but I'm sure some of you wonder if we do, "What if a baby survived but not me?"

I'm not trying to be a downer. I am normally pretty positive here [she chooses joy isn't just a title, it's my life!], and truly that is how my thoughts are most of the time. I've done quite a bit of work on my thought life the past four years. Today I just wanted to shine a little light on my very real world, not all rainbows and cotton candy clouds, and show you (though I'm not sure I'm doing a good job sticking to the point Lol!) that even with seemingly unfair or frightening circumstances, you really can thrive! I hope I am sharing how it is possible to walk through life with serious circumstances, and at the same time have complete faith in a God that does the impossible every day.

Victory is a double blessing of a baby in one little girl, and not a day goes by that I don't see that and thank God for that.

Zechariah 9:12 in The Message says, "This very day I'm declaring a double bonus- everything you lost returned twice-over!"

My heart rests because, while I dream of having a bigger family one day and I believe God can and will heal me, and may make that dream happen, my heart is full being a mother to my one wonderful Victory.

What if God has already fulfilled a promise to you, and you just haven't noticed it yet? You looked, but didnt see?

We need to look for and see the good in what we have, before jumping on a train of thought comparing our life to another's, or whining at how unfair we think life is. If I spent all my time only wishing I could be pregnant again, or have more babies, or that we had the resources to adopt instead of paying medical bills, I would be robbing myself and my family of being fully aware and grateful for all I have in the present.
I missed a lot of days and nights with my girl this year, in the hospital, the infusion center, the clinic, my bed. I had to trust that she was going to be just fine, and so was I. I had no choice on my physical location, and the way I saw it, no choice in my thoughts either. I had to fight to trust!

And here we are.
Celebrating TWO, celebrating my platelets recovering, celebrating our faithful God!
Instead of looking at what I miss, I choose to see the restoration, the full replacement and overflowing beyond, of what was lost.
And celebrate, celebrate, celebrate,
rejoice, and thank God!  :)

What's Happening

Ok, so I am about a month overdue for a major update on everything that's been going on with me. Our one "real" computer in the house, a little netbook, hasn't had a working screen in almost two years, so when I need to sit down and really blog, I have to make the time to turn it on, plug in the special cord that Hubs rigged up to connect the netbook to the TV, and get a chair over to the spot, hunker down and start typing. And then more recently our little netbook does this really charming thing of shutting off, completely randomly, either while paying a bill, writing a blog post, or worst of all - livestreaming church! Oh well, we make do. I am going to type as much as I can while old Trusty (or Not-so-Trusty) is running, and see how far I get :)

So. I have been out of the hospital for about six weeks, I think, and it has been AMAZING! The weather in Seattle has been out of this world beautiful, and I've been able to catch up on things at home that have been neglected for the past ten months as I was just struggling to stay alive and functioning in the very basic human mode. The other day I finally (as in, a year later) organized the big cabinet we put on the bathroom wall, cleaned it out of everything that had piled up over the year - wax ring for installing a toilet, anyone? - and got all of our bath towels put in the there.

Wow, that felt good to finally accomplish! When everything unnecessary and unused is OUT of a space, and it just has what we use and need, I feel so much better. So yay me, for slowly but surely working on things and getting to enjoy being a wife, mom, and domestic diva a bit again :)

Another accomplishment was finally putting tile backsplashes up in our kitchen, oh, three years after the remodel too place? Again, what a feeling of accomplishment, and security that no water from the sink or grease from the stove will be splashing onto the drywall (which is, yes, still unpainted) and causing issues down the road). I'm so thankful for the great deal on tile that we got, it was just what we wanted and works great in the room. We repurposed shelving from another area in the house, and I've got my open shelving wall and tile. It's looking pretty cute!

One bummer we found out is that there is mold under the wall surfaces in our coat closet, and so alas, ANOTHER remodel looms. It will be the last one, it is the closet in our living room, which is our one remaining room with old plaster walls and no insulation. But finding the time and resources to do that, in an already busy and balancing act of life, is a challenge. Good thing Hubs is always up for a challenge - by fall, we will get it done I think, and be much healthier and cozier this coming winter! 
In the meantime, I have boxes of my crafts supplies, fabric stash, glassware, birthday party supplies - you name it, sitting in my living room, waiting for a finished closet to be put into. Character building, I say ;)

So, moving on from house to health - here's what's been happening:

Going with the most recent events, I am on Prednisone right now in case of liver rejection.
My LFTs (liver function tests - ALT, AST, Alkaline Phos, Bilirubin) have been elevated pretty consistently for a couple months, actually since switching from Tacrolimus to Cyclosporine as my anti rejection med. My doctor is very calm about it, which I really appreciate and need, and isn't panicking, but started me on Prednisone a couple weeks ago and we are going to recheck my labs tomorrow (Wednesday). If numbers aren't improved, I have to go in for a liver biopsy. They will want to check for rejection, as well as any issues like infections and what not. It occurs to me that after so many blood transfusions this year, they will look for hepatitis as well. It will all work out!
Interestingly enough, the reason they can do a liver biopsy without the risks of bleeding is that...

ITP seems to be in total remission!!! GOD IS GOOD!!! My platelets have been steadily climbing since I left the hospital in mid June, and that has been an absolute encouragement. It is so fantastic to get a call from my hematologist or go online to check my results, and find that the platelet number is higher and higher every time. What a gift after such a crazy year of scary-low critical platelets! Most recenty, last Monday, my platelets were at 149,000. The range they call "normal" is 150,000-400,000, so WOW, I was just one point away :)

In light of the elevated LFTs, I went in for an MRI/MRCP earlier this month. They were checking to make sure I did not have any strictures in my bile ducts, as when you have PSC (Primary Sclerosing Cholangitis) liver disease, those can become a problem, and cause back ups and pain, cholangitis infections, and elevated numbers. I refuse to accept that PSC is back in my new liver, despite what the reports may have shown over the past couple years. I believe God healed me with my transplant, and I am sticking with that. And awesome as He is, God gave us a great report on the MRI! No strictures, and actually improved liver tissue in an area that radiology report eighteen months ago said was looking not so good.
Awesome, right?! :)

Finally, the other health event I had was my annual colonoscopy. Woo, party time! (Haha!) 

colonoscopy prep solution

With all of the colitis problems this year, the major bleeding coming from my colon and just being exacerbated by the ITP low platelets, my gastroenterologist and I came up with a plan to start talking about colon removal. The first step in the plan was to even accept the idea. Talking about a simple tiny biopsy and colonoscopy, let alone complete removel of my colon, is very serious when my platelets were as low as they were (8-10,000, consistently). It is much more than an issue of surgery, as there's talk of hemorrhage risk, and also they said I must do the surgery at a liver transplant center, because there is a risk of liver failure when doing abdominal surgery when liver scarring or cirrhosis is evident (so 'they' say). As you can imagine, becoming comfortable even talking about a decision that major was a big deal. That alone took me a few weeks.
Then I started doing research, asking questions, and had an interview with my doc and asked all sorts of things about colectomy, ostomy bags, and so on. If I am not completely healed of colitis, a surgery and ostomy looks like it is in my future. That was another big mental thing to get a grasp of, and took a bit of time.

Snuggles with my girl while waiting for my doctor

My smarty girl, checking me out after she saw my doctor do the same thing :)

The most recent step was to have my colonoscopy, so they have a current picture of what my guts look like to give to the surgeon if we continue going down that surgery road. This wasn't even an option for most of the year, because of such low platelets. But my platelets started improving and we scheduled the procedure, and the day before I went in to get my numbers checked. They were planning to give me a platelet infusion during the procedure, to prevent any bleeding issues, and only take a couple biopsies. Well, my platelets came back so good, I didn't need any infusion and they got to take more biopsies, which is always good for monitoring sake. Woohoo!

Kind of grossing me out, I had a number of polyps in my gut. I've never had that before, even having colitis for nearly 20 years. But they were all biopsied, along with a bunch of other spots of gut tissue - and everything came back clear, no malignancies, no dysplasia! Yeah Jesus! :)
Also, the report, similar to my Liver MRI, came back showing that my guts look better than the last scan, in two areas. There is definitely colitis activity and my transverse (across the top of my abdomen) colon looked worse, but the ascending and descending colon areas are improved. So, hurray for that!

Thankfully, things have been pretty quiet with colitis and ITP these past six weeks. I am so grateful for that! Not having to worry about bleeding and transfusions and going back to Critical Care or riding in an ambulance... phew! Thank You Jesus!
What a gift it has been to be at home, at church, and around our city with my sweet family and incredible friends, just enjoying the summer weather and all that is good in my life. WHAT a gift.

We may live in the 'hood, but our summer sunset views are million dollar :)

Pray with me in agreement for a great report on my LFTs and platelets tomorrow! Once my numbers are stabilized, I get to taper off the Prednisone, which is always a good thing. Last night my knees and belly were super swollen from the side effects. Pred is a great drug in the short term, but so many icky side effects when you have to be on it for a while. Speaking of which, is why I am up before dawn today. (Insomnia is another lovely side effect.) Thankfully in the summer, being up this early, it gets light out early, and I have always loved watching the sun come up. One reason I really loved being on crew in college :)

Today is a new day, full of new gifts, opportunities, and potential! Seize the day - look UP and around at all you have been given - life is good! Xo!

"So if you’re serious about living this new resurrection life with Christ, act like it. Pursue the things over which Christ presides. Don’t shuffle along, eyes to the ground, absorbed with the things right in front of you. Look up, and be alert to what is going on around Christ—that’s where the action is. See things from his perspective."
-Colossians 3, MSG

Crock Pot [keepin' the kitchen cool!] GLUTEN FREE Banana Bread

Wow, what a ride it has been these past ten months. There is much to update, so much I want to share that I've been unsure of even where to start. This post will break my writer's block/overload, perhaps, since it's just for fun! :)
The one health update I'll share today is that I am thrilled to report, my platelet count has been steadily climbing since I left the hospital in June! Yesterday it came back one point below NORMAL range!  God is healing me thru and thru!

So onto the banana bread fun!
I discovered this idea when we had a major heat wave the weekend of Mother's Day, and I wanted to make quick bread for the brunch, but did NOT want my kitchen to get any hotter than it already was!
Enter my favorite kitchen appliance: the crock pot! This recipe as my inspiration,
I made some modifications and voila, Banana bread in under three hours with no extra mercury rising in the house.

What you need:
1 3/4 cup Trader Joe's Gluten Free flour blend
1 tsp xanthan gum
2 tsps baking powder
1/4 tsp baking soda
1/2 tsp sea salt

3/4 cup coconut sugar (check out Madhava brand Organic Coconut Sugar thru Subscribe & Save on Amazon!)
1/3 cup organic butter or coconut oil
2 cage free eggs, beaten
2 ripe, medium to large size bananas (or 3 small), mashed
1 tsp pure vanilla extract (I use Trader Joe's Pure Bourbon Vanilla Extract),
1/2 cup frozen organic blueberries

What you do:
Grease the crock of a 3 (ish) quart slow cooker with butter or coconut oil. Set aside.
In a medium mixing bowl, sift together all dry ingredients except sugar (flour, gum, soda, powder, salt).

In another bowl, cream together butter (or coconut oil) with coconut sugar until blended. Gently mix in beaten eggs, mashed bananas, and vanilla.
Add in the dry ingredients slowly, blending well with a whisk.
Stir in the blueberries (no thawing needed).

Pour batter into pregreased crock, smoothing the top with spatula. Cover and set to High. Walk away - you're basically done! :)

Check the bread with a toothpick after 2 hours. It will be done between two and three hours. (Slow cooker power levels vary by brand.)

When bread is done, toothpick should come out clean, but bread will be moist and oil sizzling on the edges. Remove lid and let cool/set up for five minutes. Cut into pieces and scoop out of crock, or turn out the whole loaf onto a plate and cut to serve
Enjoy!

*Sometimes it is recommended to prop open the lid with a wooden spoon when baking in crock pots. I've never done this, but know it's an option if bread is too moist/not setting up.

Update: This recipe is even more fool proof than I thought! I ran out of Gf flour blend but had ripe bananas to use, so I thought I woukd experiment.

I used 1 cup brown rice flour and 3/4 cup teff flour. I was much more lax with the mixing too, I just combined all the wet ingreds together, added the dry, and put in the crock. This time I set the slow cooker on Low and let it go 4 hours. It turned out great - moist and delicious again! it was just slightly darker in color because of the teff flour.

so there you go, this recipe is even more versatile tban we knew!

If you make any changes be sure and comment to share your experience :)

Crazy Week, part two

I ended up being in the hospital for five days, I think. I got to go home finally on Saturday afternoon. The first 24 hours in the ER and CCU went by so fast, when I was trying to remember what happened there and how long it was, it was a blur. I'm sure that has to do with the whole "hemorrhagic shock" thing. Medscape says, "Hemorrhagic shock is a condition of reduced tissue perfusion, resulting in the inadequate delivery of oxygen and nutrients that are necessary for cellular function. Whenever cellular oxygen demand outweighs supply, both the cell and the organism are in a state of shock."

I really didn't take the CCU doctor very seriously, I thought she was overreacting calling it that, but once I was up walking around, and felt the complete muscle weakness in my quads and calves, I realized that my body really had to pull strength from somewhere to get through those intense hours. It was tough just walking down the hallway one time; my legs really lost their strength over night.
Once I was discharged and trying to get back to anything resembling normal life at home, that was a rude awakening! I realized, okay, my body really took a hit in those couple hours that my blood count got so low. How I got to that point, by the way, is the same thing that's been happening repeatedly in the past six months or so. An episode of bleeding that gets out of control, my body can't keep up with the blood loss, and things get ugly. (ITP / critically low platelets + Ulcerative Colitis / gut infection causing GI bleeding = no clotting happening = bad scenario)
So after all that, I realized the doctors weren't overreacting, they were really concerned, and took good care of me. This was the worst, most serious event we've had happen, and I am lucky to be here ... again ... always.

On Wednesday, I believe it was (my first full day out of the CCU), I had a great friend come to the hospital to visit me. A dose of friendly faces from the "outside world," bringing faith, smiles, genuine care and help to you when you're stuck in the hospital -especially when you have no clear timeline of getting out or solution to prevent this from happening again- that is such a gift! Thank you to my sweet friends and family for coming alongside Hubs and I through this, both this one event and throughout the past eight months. It's definitely been the hardest year of our life together since we've been married, and probably the hardest year for each of us individually in our lifetimes. The people who've stuck by us and trudged through this season with us - you are truly priceless!

Wednesday evening, just when I was starting to get concerned that I hadn't seen my hematologist and wondering if he would be coming by, because we had some things to discuss - he popped into my room like an instant answer to prayer! We had a great chat about putting some notes in my chart for any staff to be able to access, noting that we have a plan in place for when I have to come to the hospital, and basically saying to all the doctors just meeting me and seeing my lab numbers, "Do not freak out! This is normal for her and we have a plan!" It was funny to hear my doctor admit, "When I first met you and saw your numbers, I freaked out! But now I'm used to it." I have a great care team and I appreciate when we can laugh about things together :)

We also set up a plan to go by when I went home. It is basically, to go to the lab twice a week to monitor my CBC (red blood cells - hematocrit and hemoglobin, and platelets, being the most important numbers to watch), and call with any serious bleeding, and if a transfusion is needed, the nurse will triage me to either an outpatient infusion center, or an overnight direct admit to the hospital for fluids and blood if needed.
It felt really good to set up a plan, just because everything has been so unpredictable and crazy the past few months, at least we now have a set idea of what to do when symptoms come up. I realized I have to do a better job of facing the reality of a bad bleeding episode too, and go in for labs and let all of my doctors know, instead of hoping it will clear up on its own.

The rest of the week was mostly a LOT of blood draws, a few more units of blood transfused, magnesium IVs, IV steroids, and starting an antibiotic for aNOTHer infection I got from being in the hospital. Yuck! Thursday night (early morning) I got 90 minutes of sleep, the rest of the night I was awake and in serious pain and going back and forth to the bathroom far too many times than anyone should ever have to! Thankfully that improved slowly over the next few days, and though I could have gone home sooner if I had not had that infection come up, it was good to stay in the hospital until everything was calm and my counts were stable.

I sure miss my Victory when I'm in the hospital. Highlight of the week was definitely her visit!

While I was in the hospital, we also started talking more seriously about something that came up the last time I was there: surgery. Surgery to remove my colon. I'll blog about that next time.

For now I'll wrap this up. I have been to the clinic for three CBC tests since leaving the hospital, and each time my hematocrit and hemoglobin have been good, staying stable above 30! My platelets were 7,000, 8,000, and then most recently, 11,000, which is no where near normal (150,000-400,000) but it's great to see them stable and even increasing a bit.
My guts are staying mostly quiet, and no serious bleeding issues, Praise the Lord!
It has been a true gift to be able to be home with increasing energy and strength for more than one week. I have been able to do things I haven't done in months, maybe even all year! So many things go by the wayside when you're in survival mode, from regular cleaning chores around the house, to taking time to enjoy yourself with a hobby project or outing. And getting to be a hands-on mom again, after so many days and weeks of pain and weakness and needing help to even change diapers, has been the BEST!

So that's part two of my crazy week. Thankfully, since I've been home things have gone from crazy to calm, and are going well! Quiet and stable is much preferred to crazy and serious :)

Crazy Week, part one

Exactly seven days ago, I was spending the night in the Critical Care Unit. Tuesday morning my husband had to rush me to the Emergency Room, where they declared I was in hemorrhagic shock. My blood pressure was low, heart rate high, skin white, and body struggling. Hubs had to carry me to the car and into the ER wheelchair.

After arriving to the ER, they got me right in, and all available staff came to assess me, put in two IVs simultaneously, ran an EKG, and a tech stood by ready next to the code cart.
Here I am wrapped in blankets - I was so cold:

I was put into the CCU because they could not find a match blood donation to give me right away, and wanted to monitor my vital signs closely in the meantime. It ended up taking five or six hours for the blood to arrive. I received a platelet infusion while waiting for the blood, but it didn't boost my platelet level. (Same as the time in December when that was tried.) This darn ITP is a nasty thing.

You know what they don't have in the CCU rooms? Toilets. Bathrooms. In case you love to use a classy contraption called the bedside commode, it's the place for you!

God bless my husband for his nurseliness. The things he puts up with for me...

After my transfusion of two units, I had a little improvement. It was slight, just sitting up successfully and better vitals, but progress. Hubs said my skin also had some color back to it.

The next morning, my doctors explained the plan was to transition me to a medical surgical floor. We waited most of the day for that, and in the meantime I was able to start walking around. The hospital has a rooftop garden for patients right down the CCU hall, so we went out there to enjoy the sun.

What a testimony to the power of prayer! I looked so much better and felt better then. I stayed outside almost an hour sitting and drinking water and sun basking. Then we went in, ate lunch, and it was time to go upstairs.

My room was on the top floor of the hospital, possibly the best room and view in the whole place! It also happened to be on the floor where a friend of mine is a nurse! I felt like God gave us favor with those circumstances, they were not a coincidence but Him, showing us He was near even in those little things.

The view from my hospital window:

I got settled in, the hospital doctors came to see me, I got to eat dinner, and then it was night. They started me on high doses of IV methylprednisone, and checked my blood count again.

To be continued...

turn Weak into Strong

Yeah, I kinda dropped out of the Blog Every Day in May challenge. I'm okay with it. I've been been having a tough week, a colitis flare and my platelets are being stubbornly low. I'm going to win this battle, I keep saying it and it will happen eventually.

So I just wanted to check in and let you all know I'm still here, just not all about blogging at the moment. I'm still reflecting on an incredible Oxygen womens conference last week, recovering from a full weekend, and marvelling at the daily blessings that come from being a wife and a mom to two incredible people I have the joy of calling my family.

I do want to share share one thought that's been trudging around my head all day today. It's the second part of Joel 3:10 b, "Let the weak say I am strong."
This verse dropped into my path yesterday when I was doing some reading, and it is so timelyfor me. In tbe times that my blood count is dropping, it's difficult to watch and feel the effects in my body. I have learned recently that I can declare strength from God, literally speak it with my mouth, and it makes a difference. It makes my body respond, because there is life and hope being spoken. In the struggles of life, including physical, we are not powerless!

Read the Message translation: "Let the weak one throw out his [her] chest and say, "I'm tough, I'm a fighter!"

That's what I'll be doing this weekend, determined to bounce back from this setback without a hospital visit!

Steady On

I am laying on the couch waiting for a pain med to kick in. My joints are burning something fierce, all over my body. On my left side, nagging at me, my spleen is so enlarged it is poking me in the tummy, lungs, diaphragm. Meanwhile, I think it's my liver that is bothering me on my right side; I felt twinges of pain in my back and shoulder this week, perhaps confirming the bad lab numbers we got this week. Steady on, Em.

Today I was blessed to receive three units of blood, to raise my hematocrit up from the stinky 22 it sank to over the past two weeks of decreasing platelets and increasing UC bleeding. The blood bank couldn't provide a perfect match for me due to my complicated antigen list beyond a simple "O positive" label.
But all went well!

First IV had no blood return - deep breaths, steady on. Had to take premeds as a precaution (Tylenol and Benadryl) and had a fever and felt very flushed for the first unit. Steady on. Eventually I had a nice nap while Hubs read through the first five chapters of "Huckleberry Finn."

A friend has been encouraging me with that short sentence in past days and weeks. I face a challenge, get my brave on, overcome the hurdle, celebrate... then pow, another setback. "Steady on," she reminds me. Okay. I can do that. There are so many reasons to celebrate in the midst of a season of challenges seemingly unending.

Respond to every instance of negativity with that truth set in your mind. And steady on. Pick up your courage, put on your peace, look to the heavens- He is surely watching, never letting you out of His sight. No need for hysterics. No need to dump your confidence - remember His promise: He will richly reward it! Steady on.

When I got the call late Wednesday evening, from the on call doctor passing on the concern the lab had called her about minutes before, I'm happy to say I remembered "STEADY on." Listen to the words - "your hematocrit and platelets are critical," write it down. Ask questions, hear the answers - "a transfusion is highly recommended. Much lower and your heart will be working too hard." Hang up, and talk to God. "Lord, I wish this wasn't happening again. but You are on it. I'm confident You'll see me through. Thank You for that."

And He did. He does. He WILL.

Last weekend we got to go on our trip. Thank You, God, for answered prayers! It rained much, and I was sick too much to be fair, being our first vacation in years. I was tempted to cry all day, commiserate with myself at having to cancel all plans and miss the special time with friends that we planned.
But God has given us the most gracious friendship. They came to our hotel, and we had a great time together despite my limits. I even took a nap when needed, and no one minded a bit.

How that simple gesture, soothed the disgust I feel being the "sick girl" who cancels plans, who comes off as flaky and noncommittal, when that is the farthest from who I desire to be.
And that evening, I felt better, and the next day, more so! And the sun came out. And it was a special time for my little family, making memories, celebrating life.

When something goes awry, a spill and a mess occur, plans are shoved off course, hopes are dashed- but that's just it! Hopes are NEVER dashed. Stay confident. There can always be a course adjustment. Plans may change, but purpose sticks around. Purpose remains, if you let it.

Tonight is uncomfortable. Well less so now... that pain med is kicking in. Thank You for that too, Lord : relief.
"But!" But I was able to receive blood! A little pain for (hopefully) weeks and months of strength and energy. A trip that didn't go as planned. But! the memories I recall now are so rich!

A daily life of late that looks nothing like I thought it would. But! Wealth of love, joy, and meaning like I could never plan for myself.

Choose to be flexible in life. Always let the hurts go, and never miss a chance to celebrate the gifts. Next time you face a tough situation, remain confident. Remember those two words. Steady on.

Hebrews 10:35-36. "So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God you will receive what He has promised."

Ups... and Downs...

Hey y'all. How are you? Do you too feel like February has just flown by? I have not updated in nearly a month and felt the need.

I had a few amazing weeks after my last, mega, blood transfusion. And just last week had blood work taken and got a great report back on my platelets: 54,000! This is still below normal range, which is 150,000-400,000, but much better than the critical numbers I was battling since October. Glory to Jesus and His healing touch!
What didn't come back so great were my liver enzymes, which were quite elevated. My doctor had me get those rechecked yesterday, and thankfully our prayers are being answered, they have decreased. But they have been a bit elevated for a couple months, and I have a liver check up next week, and I know there will be talk of MRIs and biopsies. (sigh...)

All labs will be repeated in two weeks, pending no changes in my symptoms. so then we'll see where things are sitting.

Which brings me to my other news, unfortunately I didn't to enjoy having energy and doing real life stuff again for long. For about a week now I have had an UC flare and been losing some blood and starting to feel fatigue, and then caught a nasty cold which is now in my chest and causing pain and coughing and all sorts of tiredness.
It has been a tough few days, I have been feeling frustrated that I just can't catch a break and be well for longer than that ten day or so stretch I got to enjoy.

Life is hard right now. We are hanging on to the hope of God's provision and sovereign plan, and without that... things look pretty grim.

We have been planning a little road trip getaway for a while, to get out of town, away from the stress, stacks of bills, insurance paperwork, and our still unfinished house. We are scheduled to leave on Thursday morning. If you feel moved to, please pray that we will get to go, that my body will recover a hundredfold overnight, and neither my illnesses nor anything else will stop us from this much needed time of refreshment and fun. A short respite from this cycle of survival mode is so needed.

Thanks for checking in and reading. Life is hard, but God is good!

2 Corinthians 4:16-17
 "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all."

I am so thankful for this promise!

Four Units of Blood Later...

...I feel like a new woman! It is a slow recovery, but I am making a comeback and starting to feel like MYSELF again! It has been such a long time... since August, I think, that I had energy and felt "well."

I had a bit of an emergency last week. My blood volume and red blood cell count got so low, due to colitis bleeding leading to TOO much bleeding from my low platelet level (not able to clot), I had to go to the emergency room and then be admitted to the hospital, and received four blood transfusions (four units). Normally when your hematocrit and hemoglobin are low, the standard is two units. I got double that - phew! One of my nurses even said he had never heard of someone getting four units at once.

I found out that my numbers were so low (hematocrit: 15!) that I could have had a kind of heart failure. I am thankful I had the sense not to get up much from bed for the three days it took to figure out I need serious medical care. One of the doctors said if I had exerted myself, and got my heart working harder than it already was - and it was working hard; my resting pulse was 140, yikes - that I would have had some problems...

Thank You God for your protection and wisdom, and my husband taking care of me so I could stay safe!

Now it's been a few days, and I am slowly recovering. I haven't had bleeding issues, praise Jesus for His healing mercy, and my hematocrit must be hovering around 30 or 32. It was 32 before I left the hospital last Friday. That is a WONDERFUL number for me! I am able to get up in the morning and get out of bed, greet my baby girl and get her up for the day, changed, dressed - never take those things for granted, because I haven't been able to do them in weeks, maybe months. I missed that. Not caring for your own child, you start to wonder, "what makes me a mom?" It's all good now, but it is an interesting struggle when you are in that position.

Yesterday was the first day I felt "well," and my Hubs and I got out and did a bit of adventuring together. One of our favorite things to do is go to the thrift store, where they have this HUGE yard full of trash and treasures, and see if we can find something we need or could use. We found a great old wooden rocking horse, we're going to sand it a bit and get it spruced up for Victory. I had to give it a test ride, of course, before we bought it!

Well, I am going to get up and do something fun and productive now for a change! :) Join me in faith believing and praying that I am now healed, that it will only be improvements continued from this point, and no more backwards steps into any other illness or issues. Seize the day, friends!

Another Transfusion

Hey there, friends. Today I had another blood transfusion. Hematocrit was down to 25 on Monday, and since then I have had some seriously unnerving symptoms from a colitis flare. Won't get into details on that, but suffice it to say, I think my hematocrit was closer to 20 today going into the transfusion, than 25.

I went to a new hospital I've never been to. The satellite/branch clinic that is my home base usually (because it is closer to my home than the main hospital in Seattle) does not do blood transfusions, and because this was sort of urgent and I'm working with my primary care doctor now on this stuff, whose goal is to be super efficient and make things easy on me (she is the best!!), she sent me over to this small hospital about fifteen minutes from home. Even though I had my blood drawn for the type and cross-match last night, which should give the blood center plenty of time to find suitable blood for me, I have developed some antibodies lately and they couldn't find a good match. 

So after initially delaying the appointment two hours, then they finally delivered the blood about 45 minutes after I got there and had my first IV in. Yeah... first IV... Just when the nurse was about to start the infusion, I noticed that around the IV site my skin was elevated - this happened about a month ago on the same arm, and it hurts! The vein gets punctured and so the place in between my vein and the skin starts filling with IV fluid and such. Super gross to think about, and really painful. It will take a few days to flatten out again; it hurts now whenever I move my arm, becuase it's on the inside of my elbow area.

So unfortunately with that happening, the nurse had to take out the IV and put in a new one on my other arm. [Oh my veins, please relax and start working like you used to!] It is really hard to sit through multiple painful IV pokes when you are already exhausted and have a racing heart rate and seeing spots from low blood volume. At this point in my life, what I do is sit there and just imagine Jesus sitting with me, holding my hand. And I imagine what He went through on the cross for us. If He could bear that, I can bear some little pokes, I think to myself. It does help. Hey, you do what works - I'm not a weirdo!

Because they never could come up with a good match for my blood with the antibodies, so they gave me blood that wasn't exactly matched, and administered Tylenol and Benadryl to stave off a reaction of a fever, itching, rash, etc. - the common symptoms of a blood reaction. If I may make a little PSA here, see, this is a reason why everyone that can should get out there and donate blood! Maybe you have antibodies in your blood, and it will be a perfect match for someone in my situation! I was lucky enough to get a perfectly matched transfusion of two different units last time.

Benadryl always knocks me out, so I dozed off while most of the first unit transfused. This worked well because Hubs was with me, there happened to be a free recliner and TV next to me for him, and he got to watch Man movies like "The Patriot" on AMC while I dozed and got my transfusion today. A good mental vacation for him, my faithful companion :)

Both units ended up going in fine, thank You God, and we saw much improvement in my blood pressure and heart rate as the afternoon progressed to evening. I am having some flare up issues with bleeding still (probably because my platelets are still not up where they should be) and so I am losing more blood. I just pray that stops tonight, no more bleeding! and I will wake up tomorrow with a new feeling and a lack of disease in my guts. That is my prayer every day. It is really hard to sit and watch your body operate in such dysfunction, and not be able to do anything about it. I've done the meds, the diet changes, the stress reduction, the extra resting... this is one left up to the Lord for a miracle. But at least I was able to get blood today, and come home to my own bed and my sweet family tonight. Even on my worst days, there is so much to be thankful for. Especially that I am still breathing, walking, talking, thinking, hearing, smelling, seeing...

I almost forgot, I have a praise report to share. Despite stopping the N-plate shots, my platelets were up to 11,000 on Monday. That is a great improvement from the 2,000 level they were at about two weeks ago. My doctor was encouraged along with me that they went up "on their own." I believe it's a combination of the natural supplement I'm taking to boost platelets, and answer to prayers! But it was really wonderful to see that improvement. Now to get them up to above 150,000 where they belong!

I will wrap up this post with a verse from Psalm 73 that I had on my mind tonight. I am grateful for this truth:

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.

Update... (and Hurray, tomorrow is Christmas Eve!)

Hello friends!
Christmas will be here in two days, and two days after that, it will have been two MONTHS since my last update! Oops! I've often thought about needing to fill you all in on what's being going on, but haven't had the energy or desire to sit and type it out. I sat down today and typed this out - it might be a bit rambling but it's an update :)


So the last time I posted, we were just starting to walk through the treatment process for ITP (immune thrombocytopenia pupura) which we were told was my diagnosis for the sudden drop in my platelets. I started the N-plate ("romiplostim") shots on a weekly basis. Our weeks were full of clinic appointments, lab blood draws, and infusion center appointments for the shots. (If I never have to go to that medical center again, I will be a happy woman! I know it too well!)

My platelet counts seemed to be responding to the shots for the first month, at least. But in recent weeks, despite increasing doses of the N-plate each week (which made me SOOO SICK, by the way) the numbers were not going up, or actually decreasing still. My hematologist recently decided to declare that he isn't sure I have ITP after all. After getting nine shots that are just to treat ITP? That wasn't so encouraging, but Hubs and I began to understand where the doctors are at - things aren't responding to their medications, and they are stumped. Period. I have become a guinea pig and they are shooting in the dark now with their ideas. They wanted me to get a full neck to pelvis CT scan last week, to look for "more significant" lymph nodes to biopsy, because they are now thinknig they may have "missed lymphoma" in September after taking out the node in my neck.

Phew. And that is the short, no-details version of this story that has been playing out for two months. All the while, we have had Thanksgiving and the Christmas season come along, and I've been trying to create some traditions and memories for our family especially our sweet Victory (who is 16 months old today!). It has been a testing time for us. I was SO SO sick from the shots, I have decided I can understand a little bit where chemo patients are at when they are so very sick. I had no desire to eat, I've lost ten or fifteen pounds (which I didn't really need to lose... Baggy skinny jeans aren't a good look!). I was more exhausted than ever before. I had terrible joint and muscle pain and aches. It was a messy time, and made worse because it took about a month to convince my doctor that the symptoms were definitely from the N-plate, because of a pattern we noticed, and I needed some medicine for nausea and the like.

Thankfully, the week they were finally listening to me, I started to feel better. But Hubs has missed so much work, we have gotten closer than ever before to not being able to pay our mortgage. We have been gifted groceries and gift cards from friends and family for food and gas. Our church family continues to be the most amazing body of people we've ever known. I am so proud to belong to a church that looks like the Church God desires and created to exist on this earth. Surrounded by our faith family, we have never felt alone or without hope. The best people on earth - I'm convinced!

Last week I had a short overnight from the ER to the medical floor of the hospital. My clinic called me right after we left the blood draws and said my platelets were down to 3,000, and I had to go to the ER because they were concerned about bleeding. When they took my labs at the hospital, their lab came back with a level of 13,000, and after a platelet transfusion (my first ever) that night they went down to 10,000. That's when the doctors really got confused, Lol!
I talked them into letting me go home the next evening, because watching for bleeding there and being bored, away from my daughter, and paying too much money, versus sitting at home where I want to be, watching for bleeding - it's a no brainer.

Since I have been home, God has sustained me every day. No serious bleeding, no ER. I have been learning so much about what it means to ask God for enough strength and sustenance for the day, and leaving it at that. It is much like Him providing manna for the people in desert. Just enough for the day, no more, no less. Wow, what a blessing that growth has been to my faith and my daily life, already.

Last week was a wonderful change of pace for us. I went to see a new doctor, a practitioner of alternative medicine, who is also a follower of Jesus. Wow, what a refreshing time it was, where we were empowered, encouraged, and given real, true information about what is standing between me and health. I am so thankful for the new path I have started from that appointment. I cancelled the CT scan which was going to be Wednesday. I cancelled my blood draw, and I cancelled my hem appointment. We all needed a break in our little family, and it was a good decision.
The main reason for cancelling the CT was radiation. Did you know one CT is worth 500 X-rays of radiation? Yuck!!! I cancelled the blood draw because my veins need a break. I had two IVs blow in the ER last week, my arms are a mess. And I saw no need for the appointment without labs to discuss. I think I will get my number checked next week, but I have so enjoyed the break from the hamster wheel of testing and results and bad reports and possible diagnoses. It can be really negative and sometimes you just need to get out of it!

I am just so grateful to be out of the hospital, to be with my family, to be able to go to church today and have gone out yesterday and made a Christmas time memory with my sweet Hubs and daughter. I'm going forward each day approaching it one day at a time, asking God to sustain and strengthen me enough to be able to do what He has for me at that time.

I believe healing is still ahead for me. Every day it has not happened yet, I am one day closer to the day it does happen. God is willing and able to heal today just like Jesus did in the New Testament -He's the same yesterday, today, and forever! I am looking forward to being healthy and strong again one day, yet in the meantime, I will not let this testing make me a bitter or negative person. I will become a better person from every challenge I walk through; that is a commitment I will never regret! And to choose joy in every moment that isn't so joyful on the surface - that is my gift to myself, my family, my friends........ Our greatest power is our power to choose. Thank You God that I get to choose my response to every situation in life!

So stay tuned in 2013... greater things are ahead for every one of us that pursues them!

Home from the Hospital, Hurray!

For those of you not in my world on a daily basis, I thought I'd better update and let you know what I've been up to. My last update stated I'd be starting my Romiplostim shots to treat ITP later that week.
Well, things got worse a little too early in the week to wait. We were on the phone off and on with my hematologist all day Tuesday, discussing the treatment and if I really had any option to wait or go with something other than Romiplostim, because I really didn't want to have to stop breastfeeding just cold turkey and without tapering down Victory's feeding schedule, or without either of us being ready, frankly! Once I'd worked through all of my questions, concerns and frustrations (have I mentioned I have a really patient, kind doctor? because it needs to be mentioned) I decided, ok, I will go ahead with that plan. During the last conversation with my doctor, it was my husband on the phone with him. I asked him to ask my doctor if he could put in a lab order to check my platelets. I was really not feeling well - just exhausted, weak, and like things were just not right in my body. He put in the order, we drove the fifteen minutes to the lab, I got my blood drawn (and received much more concern from the phlebotomist than the day before, apparently I looked a lot worse!), and we left the clinic and started driving the long way home down backroads, because the traffic for the Justin Beiber concert that night was making the freeway look like a mess and a long wait.
Within ten minutes of leaving the clinic, my doctor calls - my platelets are down to 3,000, critical in the medical world. Criticial meaning, you're not just looking out for bruises or even nosebleeds, but your brain could just start hemorrhaging at any point. Not great news. Doctors orders, I had to get to the hospital right away and be admitted through the ER, and start some treatment.

I was amazed thinking about how I almost didn't get my lab drawn. I'd made such a fuss that day that my doctor had said we could wait until Thursday to draw any more labs. Definitely a God thing that I felt funny and spoke up!

So we got home as fast as possible (which felt like it took FOREVER!), threw some things into bags, I grabbed the ripe bananas on the counter to take with us because I figured they'd be black and very scary by the time we got home - not knowing when that would be, and we drove away. Dropping Victory at the grandparents' house (by the way, I am so grateful for amazing parents that I can trust to keep my baby safe and well taken care of, and the fact that they live in the same area. Thanks Mom and Dad, you are a blessing!) we continued on to the hospital. Driving there, I got a headache, and when we were waiting in the ER for my room to become available, it got worse and worse. When they tell you that your brain could hemorrhage any time, a migraine out of the blue makes you a bit nervous. It stuck around actually for the next four days, and finally went away when a resident thought to give me something called Imitrex (not sure on the spelling of that) which is for treating migraines. That was quite a week of pain I never want to repeat!!

I am too tired still to get into all the details of my hospital stays (yep that's plural-part of the long story), but I'll do a quick bullet point list, leaving out a bunch of the medical details I'll try to share later:

• Admitted to the hospital Tuesday night
• Given oxycodone (on an empty stomach - blech) for the headache, Tues late evening - didn't help
• Given tramadol for headache early morning Wednesday - didn't work
• Had to wait for Zofran too long, and threw up from oxycodone and tramadol - headache still there
• Nurses were so helpful and gathered sterile specimen containers and zipper top bags so I could pump milk, and they put it in the refrigerator so we could keep if for Victory. My doctor agreed to put off my shot one day so I could have more time to pump. That was really nice of them and meant a lot to me.
• Two infusions of IVIG Privigen (intravenous immune globulin) Wednesday 3 am and 8 pm
• Visit from my parents and sweet Victory Wednesday afternoon :)
• Visit and dinner and magazines to read from wonderful friends Wednesday evening :)
• Woke up and got sick, felt terrible, got everybody worried and wanting to keep me there more days - then felt much improved in the afternoon
• First Romiplostim shot Thursday 1 pm
• Convinced the doctors I was feeling better (I really was for a time) and got discharged Thursday around 4 pm
• Driving home, that night, next day, next evening - resting and fighting the horrible headache and feeling miserable
• Fever of 101 Thursday night and early Sat morning - went up to 102 point something then, and :sigh: I had to go back to the ER. Threw up at home as we were leaving - good thing I had a collection of pink buckets from the hospital stay 18 hours earlier!
• Arrived at ER, amazing husband told them I'd just been there thru Thursday for low platelets, I am a liver transplant patient (always a big deal when you have a fever and are in the ER - they take it very seriously), and had a high fever and horrible migraine type headache. They took my temp and it was up to 103. 
• I got an IV, they gave me a pain med called "Delottid" (spelling?), it helped headache, it wore off, they gave me more Delottid. In the meantime someone drew some blood for labs, I was taken for a head CT to look for brain bleeds, they put a mask on me because the doctor thought there was a very small chance I could have infectious meningitis, they gave me Tylenol in an untraditional manner to get the fever to go down, and they put in a catheter to get urine to test... and all I remember besides that is waking up every few hours, looking to my right and seeing Hubs leaning over the bed rail trying to sleep - or praying - I haven't asked him what he was doing. I just remember waking up, looking over, seeing that, and crashing again. Like something out of a movie I tell you! I have quite a colorful medical record, but I am not usually the girl creating a hectic scene in the ER. Interesting experience for me!
• Turns out we were there waiting to be admitted, for 11 and a half hours. Have I mentioned that my husband is a saint? He is the most incredible man I know, dealing with all of my nonsense health issues, and all the ramifications of those - financial and otherwise - and the guy never complains. He is a saint, and I am blessed.
• Somewhere around 4 pm I was taken to my room - woke up enough to walk from the ER stretcher to the bed (four steps or so). Went back to sleep, woke up at dusk. Fell back asleep. Turns out that the anti-nausea med they were giving me with the Delottid is very sedating, creating that 24+ hour blur I have. All that sleeping + high fever = a crazy damp bed, let me tell you!
• Saturday around 7:30 pm a neurologist came in to my room and said they wanted to get some spinal fluid to look for meningitis - because of the ongoing headache, high fever, and nausea. Translation: spinal tap! Another one for the medical bucket list! It wasn't that bad.
• I think it was Sunday morning, a resident suggested I get that migraine med, and I tried it and PTL, my headache left, finally!!! I got another dose of that when it tried to sneak back, and it worked and kept it away - and it hasn't been back since!
• Sunday I don't remember a whole lot, except kicking my hubs out to go to church and get some encouragement, which he did. Turned out he got a LOT of encouragement, hugs, prayers, LOVE! We have an amazing church!
• Sunday afternoon friends came to visit after church - more friends came - family and sweet Victory came - then everyone was gone.
• Sometime in there they came back with a report from my spinal tap that there were white blood cells in the fluid, which is called "aseptic meningitis - inflammation of the meninges." Also, we learned that the IVIG I got infusions of the previous stay can cause something called "chemical meningitis." 
• They had started IV antibiotics late Saturday night I think, and continued them late Sunday night/Monday morning.
• Monday all the doctors that had been following me came through and gave their OK that I could go home, as my fever was gone, headache was gone, nothing was coming back on my spinal tap, and I was feeling much better in general.
• The doctors concluded that my symptoms that brought me back to the hospital were either a reaction to the IVIG or Romiplostim, just a severe reaction not usually seen especially when only 5% of people react at all (agh, why do I always have to be the small percentage on the negative side of things? LoL), the chemical meningitis from one of those, or an enterovirus (stomach bug/flu). No real answer, they said, but those are their guesses. The spinal fluid cultures are still cooking, and they told me they will call if something shows up, and I need to come back in the get IV antibiotics. So far so good :)
• We left about 6 pm Monday, and I was feeling so good! Since then I've probably done more than I should (I have a difficult time sitting still, I want to DO things always!) which is probably why I feel weak and tired often. But I am feeling good, my platelets were at 32,000 Monday morning, the only bad thing is that my white blood cell count is now at a point where they get really concerned, and I have to be extra cautious of sick people and going out because an infection would be a bad thing to get right now. They have no idea why my white cell count is so low, so if you like, pray with us that they can figure that one out and find a simple solution.

Five nights and six days, and my husband hardly left my side. I am thankful that his employer and managers are understanding and concerned, and never make him feel pressure to be at work when he simply cannot because of my health issues.
I pray that God provides the resource that we won't have because of this last week of missing work, and provides for the bills that are on their way. Only He knows how we'll get this paid for. I even pray that somehow we'll still be able to take a family trip this year. We had just started planning a road trip to the old west, Yellowstone Park, Mt Rushmore, and many other fun and historical places, and I hope we can still do it. Six years and one vacation is not enough, especially for a family that lives with the kind of pressure we that is there, from my ongoing challenges.

Thank you to my church family, friends, relatives, and blogging pals near and far that have been praying and cooking meals, doing laundry, offering to babysit, and some have even sent cards and given resources to us that are so helpful in this time. It means the world to my little family that we aren't alone in this fight, and so many others are believing for my total healing. Thank you! I can't wait until that happens and we can all celebrate together! Xoxo

Update: A New Autoimmune Disease

My platelet count was re-checked today, and they were at 8,000. For a refresher, last Monday they were 10,000 and Friday they were 18,000. Mistakenly, we thought that the 18,000 mark was a sign that they had "doubled," and were on the rise. Turns out that that is also a terribly low number, and once you're that low they bounce around in the neighborhood of eight to twenty thousand, depending on the hour of the day they draw the lab. (Wish I would've known that last Friday, ha!)

So after speaking with my doc, the good news to share is that still and again, my bone marrow looks very healthy (woohoo!). There are no problems and no issues with it, my body is making it just like it should, and that is all well and dandy. The bad news is that this low platelet thing is not because of anything else (bone marrow issue, lingering virus), but a new autoimmune disease: ITP. Idiopathic or Immune Thrombocytopenic Purpura. As my doc explained, it used to be called "idiopathic," as in, "We don't know the cause." Nowadays it is considered an autoimmune disease - the body attacking itself. When I asked if it was indeed ITP that I have, and he explained that history, I laughed and said, "Well at least they blame it on the body now, instead of saying, 'it's all in your head!'" That's good I guess :)

I explained that possibility in my last post. Not much more to say about it, other than I am going to investigate around my Paleo sphere and see if anyone out there doing Paleo AIP (Autoimmune Protocol) has this too!

I will get a call from the infusion center tomorrow, about starting the treatment for this: a weekly shot of Romiplostim. It will stimulate my body to make more platelets, so that even with my spleen destroying a bunch through confusion in my immune system, there will be enough platelets to have a healthy, clotting blood and not at risk for hemorrhaging and such. That's a good thing!
They would not normally proceed to this step right away, because the traditional treatment is to remove the spleen. But they do not like to do that in people with liver disease (such as myself). The spleen's function is so important, especially with a compromised liver, so I appreciate and understand that. I have been such a pincushion lately, I am grateful I do not have to undergo a major surgery right now :)

I'm certainly not looking forward to these shots, and haven't even begun to consider how we'll afford the bills - ah, patented Rx drugs, how expensive you are... and just when Hubs and I are starting to plan our first vacation ever.
But I am looking at this as a temporary set back. It is so important to keep that mindset in the tough times of life - battles are temporary, rough patches are just seasons. We must never forget that we have the victory through Christ, and God always has our best in mind. This is just a chapter; this is not the end of my story!

Jesus has a purpose for me, and for this chapter - just like all the chapters each one of us walks through in life.


So many of you are praying and believing with me - thank you for that! Here is the most specific thing you cam agree with me on: that my immune system will be healed, and begin to function the perfect way it was created to function - fighting off the bad, and leaving my body (the good!) alone! It is amazing that the confusion and "misfiring" in my immune system is the root of ALL (yep - ALL!) my health issues. My immune system set up attack on my colon (ulcerative colitis), my bile ducts in my liver (primary sclerosing cholangitis), my joints (polyenthesitis), food and other things in my blood (leaky gut, allergies, intolerances, asthma). When my immune system in healthy and whole again, I will be a new woman!

Thank You God for abundant life, no matter what the situation looks like - John 10:10.
Thank You for giving me the power to choose my response, and the grace to choose JOY today  :)


And thank you to my beautiful friend Emily, for reminding me of this truth:

So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There's far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can't see now will last forever.
-2 Corinthians 4:17

Post-Bone Marrow Biopsy Check-In, and Humbled Gratitude

Hello! I wanted to check in and let you all know how I am doing post-bone marrow biopsy. As of right now, I'm feeling well! The biopsy was kind of interesting... I got all ready and my IV in upstairs, then they wheeled me down a floor to the area where they do lung scopes, because they have the means to use sedation in that area. Once we were in the procedure room, the nurse got me ready - sticky things onto my chest for the heart and respiration monitor, getting me onto my stomach and keeping the cords untangled, etc. They let Hubs walk me down there, and he ended up staying the whole time. I told them he could wait in the corner (ha) but they let him stay right up by me and hold my hand throughout the procedure. It was pretty mild as procedures go: clean the area, stick some needles in to "numb" it, make a little incision for the bigger needles, stick in the bigger needles, get syringes of fluid, and again needles in, bottle up the samples and send them off to the lab. (This is the run-down that Hubs gave me.) The process was simple. What wasn't so simple was the fact that the doctor was going into my bone - my pelvic bone in my back, to be exact, in between my left hip and spine. Hubs said that at one point the doctor was tapping, tapping, tapping (kind of like hammering) to get into the bone for the samples. ::Shudder much?::

I am told that I was dozing for just the first minute or so. As soon as the needle for lidocaine went in, I cringed and said, "Ouch!" They had to keep going with that, and I repeated my cringing, flinching and "ouch"-ing. Then when the real needles started, I really yelped and was saying, "That hurts!" and crying. That all went on until they finished. :(
I'm glad I don't really remember that, although I have a weird dream-like deja-vu memory of it, and I woke up in recovery crying. (SO strange to me that I have no recollection of getting off the table and into the stretcher to be wheeled back upstairs - but Hubs said I was 'awake' and did it myself. Trippy!)
My poor doctor, he called me twice -later that evening and the next afternoon- to see if I remembered and how I was doing. I think he felt really bad. He is really compassionate; the nurse told me that most of the hematologists don't give their patients anything for this procedure. I have to give that a big, "OMG - are they crazy?! I wonder how they get any samples?!"

Recovery was simple, except it took me a long time to get the drugs out of my system. We got to go home within the hour after the procedure, but I took almost a two hour nap once I was at home, and stayed groggy all night. I was bummed that they gave me more sleepy juice when I was yelping, because it clearly didn't work quickly enough to inhibit the pain or my reactions, but it stayed with me all night. Icky stuff, but a blessing to have, too.

My doctor called that evening to say that a quick look at the bone marrow show it looks "quite healthy" (yahoo!!) and so in that case, he's going ahead with his hunch (after putting all the pieces of my recent and past health history together, which he did quite thoroughly in our pre-biopsy consult), that it is my immune system destroying platelets, something like the condition ITP. So he prescribed me a four day Rx of Dexamethasone, which is like a super-Prednisone steroid drug, to hopefully get my immune system to calm down. It was very interesting learning that this condition affects a lot of young women that he sees in his Hematology practice, and that often it can happen after a viral infection - your immune system is working hard to fight the virus, and it can "misfire" and start destroying platelets along with viral cells. Fascinating, and totally fits with Emily's immune health nonsense, right? (Haha.) Have I mentioned I would like a new immune system for Christmas? :)
On the positive, of course, there are too many things to list, but one huge one is that I'm grateful for an immune system that works overtime, instead of not enough!

So I'm on day three of the Dexamethasone, almost done, and it's not bad. I even get to continue breastfeeding for most of the day, I just pump in the mid-day when the dose is highest in my body and feed Vicky at bedtime and in the morning. She is so in love with nursing, still, it is so sweet, and I'm grateful I didn't have to take something that would have been incompatible with nursing. Weaning her abruptly would be traumatic. Another thing to thank God about! (By the way, I did check with my friend who is a brilliant pharmacist, and also with Vicky's pediatrician. Always good to make sure about these things rather than not informing yourself of any risks.)

One more thing about the biopsy:
My doctor is awesome - I asked him at the end of the consult if we could not do the biopsy if my platelets had gone back up to normal (they would draw a sample to test once I got my IV in), and he said sure, without even looking at me funny. I think he sees people with some faith occasionally :)  The gals from the lab came in to the procedure room right after my doctor, with their special sample-gathering equipment, and delivered the news on my platelets: they were down to 10,000 - that or below that is considered "critical." Yikes! My doctor looked at me and said, "It's good we're doing this then, just in case," and I agreed.

Tomorrow we re-check my platelet count. I am believing it will be back to normal! The exciting thing about this condition is that after this short treatment, it can disappear (or go into remission) FOREVER. Please agree with me in prayer for that outcome!

Speaking of prayer: Wow, I have been so humbled by the prayers of my Christ-following friends and my church family - my strongest teammates in life! They (some of you reading this!) are lifting me up to the Lord in mighty prayers, and I want to say thank you again! I really felt it yesterday in my body! Yesterday I woke up with NO MORE PAIN at the biopsy sight. It didn't hurt all day, until I was running through a parking lot pushing Vicky in her stroller and it just ached like a little bruise for a second (yes, I was running and pushing the stroller, and we were both laughing our heads off! It was the best!)
But back to what I was saying - I'm so thankful for a church that is family; just like God designed it to be. I am grateful for so many believing with us that my healing is on its way. I'm so thankful that God placed Hubs and I in our city four years ago this month, where we knew no one, and drew us into an incredible church where we knew not one person but each other, but knew right away that it was HOME.
I would be a messy mess without my church, without the wisdom, encouragement, and sense of belonging and purpose I receive from being a part of that house. And I am so, so grateful that somehow, although I feel like I don't contribute a thing compared to what I'd love to contribute since my health really took a turn, somehow our little family has been endeared to so many special people, and somehow it seems God makes our hearts and love and commitment to our church shine through even if we're absent more than we'd like, and not able to serve as much as we want to serve.

What a gift to know I am loved and not looked down upon one bit, and that so many of my teammates just want to see me whole and well again - BETTER than before. That reminds me of the heart of Jesus. I love you, my Champions Centre family!

[Bone Marrow Biopsy] or "Should I Start a "Medical Bucket List?"

How was your week?

I can't really remember past yesterday, as it was a completely exhausting day and my brain decided to take a short strike, I think. :)

I titled this post, "Should I Start a 'Medical Bucket List?'" because lately, it seems like I am setting personal records and doing things I've never done before -not in sports or business like perhaps I wish I could, but in the hospital arena. I set a new record last week - 15 vials of blood drawn in one sitting. And on Monday, I will be seeing a hematologist (already done that - nothing new there) and getting a bone marrow biopsy (that one is something for the 'bucket list').

It all started when on Thursday I went into the lab to get some blood work done, in preparation for a check in appointment with my Rheumatologist coming up this Monday. No big deal, just some basic's: CBC (blood counts), CRE (inflammation levels), etc. No  big deal, I thought. But Friday morning when I woke up, I had two voicemails waiting for me, from that familiar phone number of the hospital's main line. I've had that experience more than enough times, and know it's not the beginning of a quiet day. Ugh...

The first message was from the infectious disease (ID) doctor I saw last week; she was calling to discuss the results of my 15+ blood tests. The second message was from my hepatology nurse practitioner, who was contacted by the ID doctor because of some unusual numbers that showed up on my CBC. I called each of them back, eventually got in touch with both practitioners, and learned that the results from last Friday's fifteen plus tests were looking good. No infections, no viruses, nothing showing up that pointed to why I had those swollen lymph nodes. That was all good news.

Then it was explained to me that the blood work done last Friday, as well as the blood work done on Thursday, had come back with concerning platelet counts. They have over ten years' of records and my platelets have always been stable. Early September they took a drop from 200,000, and now they are below 50,000. The term for low platelets is Thrombocytopenia. This is concerning because platelets are what causes your blood to clot when you are bleeding. A count this low can lead to serious problems if you are in an accident, and if they get lower you can bleed/hemmorhage spontaneously. (Yeah, yikes!)

So, my medical team got on the case. My ID and my Rheum talked to my liver nurse, she talked to a hematologist, and the hematologist worked me in to his full schedule for a consult and the biopsy on Monday. I got between ten and fifteen phone calls from nurses, doctors, nurse practitioners and schedulers yesterday. I had to listen, learn, ask questions, process, wrap my mind around everything as best I could, explain it all to Hubs, and once everything was rearranged, scheduled, and understood somewhat, I had to ensure our sweet Victory had someone to hang out with and that I had a driver. Talk about [MENTALLY EXHAUSTING].

What an exciting start to the week- getting a needle stuck into my back. Isn't this a lovely illustration of the procedure? 

Even though that man is just a drawing, he looks so uncomfortable I feel compassion for him! Totally tense and cringing! I'm grateful that the Hem Dr. decided all on his own to give me something "to make you still like us," as he put it. When a doctor flat out calls something "rather painful," instead of using their typical underwhelming words like 'pinch' or 'discomfort,' you know it will be an experience.

So my rockstar med team is looking at several possibilities of why my platelet count dropped. They are looking at:

• Infection. Likely not this, because I just finished all that testing and all looks good.
• Immune reaction. (ITP) Your body can mistakenly destroy platelets if it thinks they are a threat.
• Cirrhosis. My liver supposedly has microscopic cirrhosis throughout, and this can affect platelet counts.
• Autoimmune disease. Active autoimmune disease like RA and lupus can mess with platelet production. My body is messed up with autoimmune reactions, and this is my hunch as to why the platelet counts are screwy. We'll see. I think my Rheum was looking at this possibility when he ordered 14 tests for me today - checking every possibility.
• "Bone marrow problems." Hence the bone marrow biopsy. They didn't say exactly what they mean by "problems," but it could be a number of things. They want to make sure my bone marrow, where platelets are made, is doing what it is supposed to be doing. The Hem I will see is well respected and a rockstar in his field, so I hear, and I know I'm in good hands as far as getting any answers in the biopsy.

Something else that can affect platelets is an enlarged spleen. I was told after my last CT scan (last spring I think?) that my spleen was a bit on the large side. Hypersplenism (swollen spleen):

Two applicable ways this can happen are from liver disease/cirrhosis and, "Various connective tissue and inflammatory diseases."  I found that very interesting, as that is what I have with polyenthesitis, diagnosed by my Rheum last year. Perhaps that will turn out to be something?

But that's it for now. I'm on strict orders to do no high risk activities, watch for large bruises or nosebleeds, take it easy and go to the ER immediately if I have any bleeding. 

Let me tell you, I am ready to be done with medical tests and appointments and all of this for a while. Hopefully Monday's test and the following rigamarole will be good, my platelet count will climb back up, and my little family and I can go away for a little trip. I think we deserve it; it's been one crazy year for this Momma! :)