Blessed

Hi family!

Yes, you all are family, not just friends and followers. It really does take a tribe, and I couldn’t travel this road without each and every one of you. You lift me up, make my days brighter, and are there for me to “talk” to, even on my hard days. Thank you!

So, Christmas is over. I hope it was a good one for you! For us, it was the first one without my “Nanni” (grandma). It was bitter sweet. It’s so hard to fathom her strong presence not being physically present amongst her earthly family. She was, however, so ready to be done with her broken shell-of-a-body, which was miserably tethering her to her frail life here. To know that she is no longer bound to her sickly, broken body is a blessing! I know she is hanging out at some heavenly beach, soaking up the rays and being happy. That makes my heart smile, even through my tears.

This is also the first year we have, quite literally, been unable to afford even one gift for our children. Somehow, they still had a wonderful day, full of smiles and giggles of glee. We had “Secret Santas” come out of the woodwork, come to our aide, and make this year a special one for the kids. It was even more special for us as parents, because we are well aware it’s only by the grace of God (and friends/family) that we were allowed a “Christmas” at all. Hopefully this next year will find us in a much better place, and we can Pay It Forward in a big way.

What comes next? Gatlinburg. We were blessed with a trip to go visit my brother’s family in Gatlinburg, TN. No, they aren’t FROM TN, they are going there for New Year’s Day. We are soooo looking forward to seeing them again! It is always a good time, and good for the soul, hanging out with them!

After that? I am trying to find an RN job I can do from the house. It is VERY apparent, especially after this last week, that trying to be normal and, you know, walk around, is too taxing on my body. I think, God willing, I can do something from home, though. I need to feel like I am providing for my family and contributing somehow. I’ll get there. I will.

Yes, I am doing the pearl thing, which is fun. I have had the opportunity to meet so many great people! It has afforded me the ability to help pay some of the bills, which is nice. It would be über cool if I could make that a career. Then, I could fizz and shuck part time, yet also work on writing. That would be a dream. #goals – I don’t understand how some people touch a company, and it immediately turns to gold. I touch it, and it barely turns yellow after months of hard work. LOL!

Anyway … I’m off to play with the kids. Andrew has some Legos calling to us. Natalie can’t get her nose out of her DS. LOL! Bye until next time!

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World record holder

Is there a World Record for the world’s clumsiest person? If so, I would like to submit my name for consideration. I don’t know what the verification process entails, but I believe I would win, hands down! Need proof?

Exhibit A: Picture it. It’s 1980. I’m five years old, dressed in a light pink leotard, and barefoot. I’m walking across our groovy brown shag carpet when BOOM! Somehow I manage to step on a toothpick that has been ensnared in the tufts of shagginess that is our carpet. Straight up into the middle of my left foot the toothpick lodges. It takes an ER visit, including a minor surgical procedure, to get the dang stick out of my foot.

Ouch!

Exhibit B: I’m in fourth grade. Our class is walking back to the school building after recess. Out of nowhere a curb shows up to ruin my day. I step off … that’s right, I said I simply stepped off … the stupid thing, twisting my ankle and spraining it really good in the process. Another fun visit to the ER, including crutches and a plaster splint, is needed to fix me this time.

I cannot believe that happened.

Exhibit C: Unknown year. I’m at my grandparents house, which is full of people who have come for some sort of party. I am playing with my cousins, and the random children that have come with their parents to this party for the grown ups. I’m in the kitchen, but I can see a group of kids playing in the backyard. I run from the kitchen, through the front room full of people, and WHAM! I run face first into the sliding glass door. I did not realize it was shut, because I’m awesome like that. I remember lots of blood, and being completely embarrassed by the number of people that witnessed my catastrophe.

Whoops!

Exhibit D: I’m eighteen years old, and I’m at Disney World for the first time. We have just finished eating, and notice a bus about to leave for our hotel. No problem, we’ll run and catch the bus before it leaves. Check that. THEY’LL run and catch the bus. I’ll start to run at full speed toward the bus, but somehow get my feet tangled up with … well, my feet. Down I go, but I don’t just fall. No, I have to be more dramatic than that. I fall and start to bounce and roll across the parking lot. When I finally come to a stop, the entire bus population is looking at me with gaping disbelief. I am mortified.

Bounce and roll!

Exhibit E: Same year. I am at the beach in California, where I have come with my immediate family and my older cousin. We decide to have a swing on a swing set facing the water. Everything is giggles and rainbows, until everyone decides to jump from the swings. They go, one by one, soaring through the air like birds on the wind, before they land perfectly on the sand, maybe ten or fifteen feet in front of the swings. It’s my turn. I’m so confident, I could burst. I let go of the rusted chain of my swing. Up I go … and then immediately down I go. I somehow faceplant under the swing. I will never live this down.

Zziiiip it!


I could go on, but I’ll let those embarrassing moments speak for themselves. I am, in fact, the most clumsy person alive today.
Do you think you are clumsier than me? I don’t think it’s possible, but let’s hear your stories of grand clumsy embarrassment in the comments.
 

It’s my blog. I can vent if I want to.

Some days are hard. Living in this broken body sucks more than you know. It’s more broken than some of you will ever understand. I will never, ever see people that knew me before. I mean, of course I will see the people around here. I have no choice in that. But, I will never go back and see those that knew me before. I can’t walk right. I can’t run. I can’t even hop. I can’t walk upstairs without help, I can’t walk downstairs without help. I have trouble writing, and I have trouble with all hand eye coordination activities. I talk with a slur. I get worn out very quickly. I look different. It breaks my heart a little. 

I know everybody is probably sick of me talking about it. But, It is what it is. I want to go back in time about 10 years. I want to be friends with, and know people from before. It just isn’t going to happen.

I’m not excusing it at all, but I sort of don’t blame people or persons for things that have happened recently. Who knows, if it was me, it might’ve happened too. I take that back. It most definitely would not have happened. I can understand though. I am so broken, it’s hard to be around me. I’m not the same person.

I mean, I am exactly the same person inside, but outside I am broken. On the outside I am a freak show.

I know, I know. Beauty is on the inside, not on the outside. But, let’s be honest, that’s bull crap. Maybe I am still cool on the inside. But, I’m so messed up on the outside it’s hard to see the inside.

It makes me sad. It makes me mad. And just couple that with recent events. I am a mess.

Sometimes I wonder if it’s the way I acted and the way I was when I was younger that has caused this. Not caused this really, but maybe it’s the reason this has been allowed. I was mean, I was cruel, I was uncaring, I was a bit narcissistic. I was awful. If you were in the path of that, I truly am sorry. I did it out of bad self-esteem and self loathing. That doesn’t excuse it. But, again, it is what what it is.

OK, let’s end this on a positive note. The sun is shining, I am alive, I have kids that love me. I’ll get through it like always, it’s just a bad day. I am feeling very very very very broken.

💜💜

Monday Monday 

Happy new week, campers! It’s going to be a good one! I can feel it!! New weeks are fresh starts, and I’ll take that any day. 


I have so much in my agenda. I have been down, for whatever reason. I don’t know if it is the new meds, depression over having no control over my life, or tapering the Prednisone. For whatever the reason, I have been spending 90% of my time in bed. That changes this week! I have a pretty, new Erin Condren planner, and I’m going to bust it out and use it! Time to get my house under control, my writing under control, my mom’s website under control, and my side-business under control. It’s going to happen, by darnit! Get organized with me, and hold me accountable.

Not the BEST picture, but you get the point.

Okay, now to update y’all on my “situation.” I went for a bone density scan on Wednesday. I swear, I’m going to be a radiation gloworm when this is all over. The bone density scan was to check for deterioration in my bones due to high doses of prednisone I’ve been on for nearly ten months now. It’s not official until the doctor sings, but I read the report: Bone density is normal for age. Praise Jesus!

Duke hallways are long!

I also went for an MRI Wednesday night (some of y’all may have seen my ridiculous LIVES from that night). I have a love hate relationship with MRIs. I am trés claustrophobic, so they have to make certain concessions for me: pre-medicated with anxiety pill, rag over face, warm blanket, earphones, and lots of coddling by the staff. As long as all those things occur, I am fine, and the ku-thunk ku-thunk ku-thunk of the machine sort of lulls me to sleep. Well. This time there were a few issues. First, it was “with contrast,” so I had to have an IV … never fun. And, I have funky veins that never cooperate, so they had to jab me multiple times. They blew a vein in my hand, so it’s nice and bruised. It’s okay. I understand crap happens with IVs. They are hard to get, especially if you’re nervous, which the first guy was. Anyhoo … I go back there, and they have new “cages” that go over the face. They couldn’t get it to work right, so not only did I NOT GET MY MUSIC, but the stupid cage pressed on my nose, making it obvious I was trapped. I thought I was going to come right off the MRI bed, but they finagled it so the bar of the cage went right, just barely, above my nose. I made it through without dying, and the staff was great, so everything is good.

I did not want to stay for the MRI.

 

I didn’t even tell you WHY I got the MRI. Since coming down from the prednisone, and stopping chemo in February, some of my symptoms have returned or been exacerbated. The MRI is to make sure I don’t have any new lesions (strokes) in my brain. I will get the results from that a week from Monday … unless they call, which is never good.

At least Duke has Starbucks. Starbucks makes everything better!

ALSO, they have started me on Imuran. It is a kidney rejection drug. “But, you don’t have kidney trouble,” you might say. You are correct! This drug is supposed to work as an oral immunosuppressant (like chemo was an IV immunosuppressant), and hopefully keep my immune system from attacking itself. The list of possible side effects is ridiculous. I mean, I look at some of the side effects and think, I’ll risk the strokes. But I’m going to try it. We’ll see what happens. Pray for me.

Keep on swimming.

If I haven’t lost you yet … The doctors, literally, have no idea how to exactly treat this, because it is so rare. They are kind of shooting blindly, and hoping it works. Sometimes it’s no fun to put your trust in doctors. Thank God that He has held me through this, because I think I would have gone insane before now if He wasn’t there to whisper, “We got this.”


In the meantime, my headaches have been ramping up, I get shooting pain behind my right eye that haults me in my tracks, I’ve got this spine thing (I can’t really explain) that makes my stomach turn every time it happens, and my balance has been jacked. So, if you pray, there’s a list for you. *smile*

Thank you, Dr. Jones, for the word! #persevere

But y’all, somebody always has it worse. I still don’t know WHY this has happened to me, but it has happened for a reason. I have to keep moving toward that light at the end of the tunnel. It’s there, it’s just hard to see sometimes!

p.s. I would be remiss if I didn’t give a big shout-out, and THANK YOU, to all the people that have come out of nowhere to help us or simply make me feel loved. There are TOO many people to name, but you know who you are! Thank you! God has used you in a major way, whether you know it or not. Even if it was just a Facebook message on my wall that came at the exact time I needed it. Thank you to everybody!! This has been a fricking LONG ten months, and I still have a long way to go. Thank God I believe in miracles.

Days without falls … zero

We’ve all seen those work-place signs: 

 

I had only fallen once … ONCE … since my “incident,” and it was a stupid fall trying to step up a step. I felt it coming. It was gentle, and I fell, laughing, into the grass. This was like 4 or 5 months ago.

Tonight was a different story.

I fell hard. J wasn’t here, but my poor kids were. I was too confident. I had JUST thought, “Man, I’m walking good today!”

I was walking back to my room from the kitchen. I had a plate of chips and salsa in my hands. It happened so fast. I think it was a combination of slippery socks, wooden floor, and clothes in the walkway. Whatever it was, it happened FAST.

I felt my feet slipping out from under me, the plate went flying. My right leg literally locked backwards, I couldn’t get my knee bent to help me. My left leg hit a box full of  random stuff. I went face first down, the box went on top of me, with all its contents. All I could do was lay there. I couldn’t move.

My poor daughter ran in and tried to help me. I literally couldn’t get my legs under me. She got the box off me. I dragged (drug?) myself over to the chair that stays in the kitchen for me to sit on. I tried to use my arms to pull myself onto the chair. Nope.

Electrical nerve pain surged up my left leg, and I couldn’t get my right leg to work.

I knelt there, in pain, praying. I finally worked myself onto the chair, and sat for a second. Then I shakily walked, holding and hugging the wall, back to bed.

I have screwed up my back, my left ribs, and my right knee. I’m still shaking. 

I’m sure I’ll be okay. I’m most upset for when I go to the doctor. EVERY TIME, no matter if it’s a doctor, an infusion, an OT visit, whatever, they always ask, “Have you had a fall in the last 90 days?” 

I’m reset to zero days with no falls. Boo-Hoo!!

I know this sounds like a horribly complaining post, but it’s really not. It just scared me, and I’m mad at myself.

Everything I’ve heard and read lately says I should come up with 10 things I am grateful for everyday, even if I think it’s been an awful day. So I will:

  1. I got to hear my sweet friend, Emma’s voice tonight. It made me so happy, even though she hates her accent. It was lovely!
  2. I got to learn some about her village in Australia, Tyalgum. So pretty and unique!
  3. I got to chat with her and Julie. I love them both. They make me laugh, even if it’s at myself. LOL!! I am really nieve about other cultures. But, hey, you don’t know if you don’t ask!!
  4. I got to spend quality time with Natalie. What started as infuriation at her, ended in a fun math game that made us both laugh.
  5. I get to be a moderator on one of my favorite sites. It’s a volunteer “job,” but it’s quite an honor!
  6. I get to cuddle under fuzzy blankets that my bestie got me!! It makes me feel like a princess.
  7. I get to blog. It helps to get words out.
  8. I got to spend the day learning about new crafts that I’m gonna try … pretty cheap crafts that I can afford to screw up if need be!
  9. Someone gifted me a book I wanted to read!! Such a sweet, unexpected surprise!! I just wish I could see this angel more!!
  10. I have a husband who keeps me regulated with my pills and exercises, going to the store, doing laundry, etc. I would not make it without him.

Ha! I did it!! 10!!! See, there’s a lot to be thankful for!

p.s. 2017 is already trying to play us. So much sorrow and death already this year. Remember to hug each other tighter, and be nice to one another. You just never know. 💜💜

RIP Clint Cummings

Was it that bad?

I guess the cliche thing to do this time of year is reflect on the previous year. Was it good? Was it bad? 

My gut reaction is: It was a horrible year, the worst yet. I had FIVE strokes (that we know of), I had to take an extended leave from my really good OR nursing job, I went from having a full-time income to no income, I can barely walk, J has been unable to take the CPA test because of me, my kids have been hugely affected by this, I have to spend a lot of time in bed, I’ve gained +50 pounds because of prednisone and my inability to workout …

Not mine, but a laugh every time I see it, because it’s so true!!


The griping and negativity can go on.

But, then I had a thought …

I could have died from any one of the strokes, but didn’t. I get a mini vacation from what was turning into a completely stressful job. I’m learning the value of a dollar, and being forced to budget. I get to say I learned to walk TWICE. J has been available to take care of me in a way that he wouldn’t be able to if he were working a full-time accounting job. My kids value their time with me … they love me no matter what. I’m slowly learning to eat right and do small exercises with my PT and OT therapists. I’ve met many wonderful “friends” being confined to bed … therefore being confined to social media (shout out to Poise Chat!).

We have had people come out of the woodwork to bless and help us.

Once I changed my negative thinking …

2016 was one of the best years yet. 

I have life. I have a great family. I have people that love and support us.

Here’s hoping 2017 proves to be great! Here’s to getting better, going back to work, J taking the CPA test, and who knows what else.


I hate hate hate cliche, but NEW YEAR, NEW ME. HERE’S TO FRESH STARTS!!

(Just let me get through the next two weeks of Lumbar Punctures, Therapist visits, Doctor visits, Sleep Study, and Chemo infusion!!) 😂 

Thankfuls

Hi, lovely people! I’m going to make this short and sweet tonight, because I’m tired. What should have been a 4 1/2 hour drive home from TN took over 7 hours. SOMEBODY wanted to come home the Blue Ridge Parkway. While beautiful, 

Us following Mom and Dad for MILES


it is L-O-N-G, gets old really fast (there’s like NOWHERE to [what’s a kosher word for “pee?”] or get gas for like 70+ miles), and adds like 3 hours to the trip!!
I digress. I will do a post on that later!

I want to talk to you about Thankfuls this month. Yes, it is No Shave November, and it is also NaNOWriMo, but it is also the month of Thanksgiving!! 

Every year, I try to “voice” my Thankfuls every day for the entire month. Yes, I am thankful for things every day, all year, but this is a good chance to get them down for people to see. It also reminds me, every single day, to be actively thankful for things!

I started this month with our charity focus for the month (check them out), the life of Emma. The rest of my list thus far is as follows: 

2) Fall colors 

3) My kids 

4) My husband 

 5) My own bed (I don’t have a picture of my bed, but I’m lying down in it right now. Heaven.)

Follow me on Facebook to see the rest of my daily list. 

Now, I challenge YOU to make your own daily thankful list! It only takes a second, but it helps to see there ARE things to be thankful for every day! You can post on our FB site, or you can post on your own! If you feel comfortable sharing, I know we would all love to see what everyone is thankful for!

Make this a month to focus on the positives! It will make life happier!! 

Love y’all! Until next time …