It came without boxes …

To quote my favorite Christmas movie: 

“And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled ’till his puzzler was sore. Then the Grinch thought of something he hadn’t before. What if Christmas, he thought, doesn’t come from a store. What if Christmas, perhaps, means a little bit more.” — Dr Seuss, How the Grinch Stole Christmas.

We have been blessed beyond measure. We have been blessed far beyond what we deserve. This Christmas season …. this ENTIRE season of our life …. we have just seen miracle after miracle.

I voice a major concern to my husband (or even to myself!!), and it’s like God says, “I got this. I’ll show you.” Then out of NOWHERE … BAM … our need is met. It’s like God is listening directly to mine and my husband’s distraught conversations, and then whispering to those that have the precise means to help where we are falling short.

MIRACLES do happen.

I don’t want to call anyone out for helping, because I know they may want to remain anonymous. Just know, you are angels doing God’s work. I have never felt so much love and support … and to be honest, I tend to think the worst, and believe that I am a bother; that nobody really likes me. I have never felt such love, compasssion, and genuine human kindness. 

Thank you does not seem adequate. It is because of some of you, that my kids are having a Christmas at all. It is because of some of you that we have food to eat. It is because of some of you we get to have special moments and traditions. It is because of ALL of you that we feel so loved. 

This has also been the perfect opportunity to speak with my children about why we help people that have needs, Jesus’ love for us, and God’s protection over our lives. It has, hopefully, made them more aware and grateful for all that has been done for us.

My wish and hope is to pay everything forward one day. I would LOVE to be the one helping, providing, and loving on those in need. I want to radiate God’s love to those in need, like it has touched us.

It is very hard (VERY HARD) to admit that we need help right now. I haven’t even needed to ask … the needs have just been met.

Thank You, and Merry Christmas! I have so much happiness right now, I just want to hug you all (and I’m NOT a hugger!).

I hope you feel loved, appreciated, valued, and worthy this holiday season, and always.

Remember why we celebrate. It’s not about the gifts bought at the stores. It’s Jesus, who has made such love and compasssion possible. He has made Christmas more for all of us! 💜💜Even if you don’t believe, He is here for you too. 😊

Borrowed. So accurate.


Nat and Drew, just being kids.

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What’s It Like?

What’s does it feel like to have a stroke?

It’s about to get real …

It’s waking up, knowing something’s wrong, but being too disoriented to think correctly. You KNOW something isn’t right.

It’s realizing in about a minute that half of your face is numb.

It’s starting to get a pit in your stomach, realizing something is really, really wrong.

It’s trying to wake up your spouse, but realizing you are unable to move half of your body. Numb.

It’s having vertigo so bad, you can’t stop throwing up, so an ambulance has to be called to try to get you help.

It’s the EMS trying to WALK you down to the ambulance, all the time questioning why you aren’t walking correctly, and why you keep throwing up.

It’s being VERY confused, because you don’t know how to answer their questions. 

It’s realizing you can’t swallow. Something’s wrong. Your spit LITERALLY.Won’t.Go.Down.

It’s a nurse being in a total rush in the ER, and not listening to a word you say. “It’s BellsPalsy. We see it a lot.” It’s not BellsPalsy, Sir. I’m not stupid. I know what BellsPalsy is. This is not BellsPalsy. If anything, it’s the opposite. 

It’s the PA coming in and saying it’s nothing but BellsPalsy (NO it’s not) and Benign Prostatic Hyperplasia. — NO IT’S NOT. Something is really wrong.

It’s being discharged while being told it’s nothing to worry about.

It’s falling later that day, and being home by yourself, unable to get up.

It’s dragging yourself to the phone, while sobbing, asking your parents so come help you.

It’s all of a sudden unable to move either leg, half your body is numb, you can’t move your right arm … and what the heck … you peed your pants.

It’s your dad rushing you BACK to the hospital.

It’s hearing a nurse in the hall saying you’re just drug seeking. (I had NO drugs … even prescriptions … in my system, and I asked for none.)

It’s a PA giving you lidocaine to drink, even though you told him you can’t swallow. This lidocaine completely numbs your throat, so now you can’t swallow, can’t clear your throat, and can hardly breathe.

It’s a PA telling you he looked at an MRI you had taken two months ago. It was “normal,” and they need the bed for actual emergencies, so you are being discharged … again.

It’s going to a neurologist, just to be told they can’t do anything but tests.

It’s having a solid, good job one day, and then reality smacking you in the face. In an instant, your career is gone. Should have rethought that short-term disability insurance … but what are the odds I’ll ever need it.

It’s going for a lumbar puncture (spinal tap), trying to sign the waiver, and realizing your brain knows how to sign your name, but you can’t get you hand to move right for the life of you. The signal from the brain is getting crossed somehow.

It’s the radiologist taking one look at you, and knowing something is wrong. “Why haven’t you been admitted to a hospital? There is obviously something wrong with you? You need to GET OUT OF THIS TOWN and get a second opinion!”

It’s the radiologist’s nurse sneeking you the name of a specialist, because SHE can look at you and see something is really wrong.

It’s falling smack out of bed, because your brain forgets you can’t get up.

It’s being unable to eat solid food, and choking when you try to drink anything. 

It’s FINALLY going to DUKE, and having them admit you within 15 minutes. “We can LOOK at you, and see something is wrong.”

It’s being admitted to the hospital, an hour and a half from home, for 14 days, while getting every test known to man run on you, and being scared to death.

It’s doctors. Endless doctors for days. None of which agree on the diagnosis or treatment.

It’s not seeing my kids for days.

It’s not being able to walk … even to the bathroom … alone,  causing a LOT of bladder accidents. After a while, it’s not even embarrassing anymore.

It’s coming home, realizing the hospital doesn’t magically make people well. 

It’s having a diagnosis, but no real idea of how to treat it. “Let’s try massive, gigantic, ridiculous amounts of prednisone.”

It’s coming home, unable to care for yourself; having your kids watch while you are unable to care for them.

It’s your kids being so scared something will happen to you, one acts out like crazy, and one clings to you like you’re going to vanish at any moment.

It’s going from taking one pill a day, to taking 14 a day to try to suppress another “incident.”

Pills for days

It’s endless doctors, PT, OT, and more doctors.

It’s being BROKE.

It’s having to start chemo once a month, feeling awful from it for three weeks, just to do it all again in a week. Is it working? They don’t know. “It will hopefully suppress the immune system so you don’t stroke again.”

It’s gaining 50 pounds, feeling very swollen, getting horribly painful stretch marks, not recognizing your own reflection in the mirror, and outgrowing all your “real” clothes due to the prednisone and the chemo.

I can only wear … can only fit in … leggings. Leggings are pants.

It’s still … six months later … feeling like you’re living in quicksand, feeling like your weighted to the ground, and being dizzy every time you move.

It’s having strength, but not able to move your body correctly … having neurological weakness.

It’s still not being able to control your bladder, and having to wear Poise Pads 24/7 like a 90 year old.

It’s still not being able to provide for my family … watching my bank account dwindle to nothing.

It’s having to admit that I have *gulp* a disability.

It’s having people at Walmart telling me that the riding carts are for “people that really need them.”

It’s my 9 year old telling me she cries sometimes, because she’s scared about me.

It’s the waiting. The endless waiting. The claustrophobic waiting … for a ride … to get better … to feel my foot … to feel my face … to work.

In my bed. All day, every day.


It’s constantly having the feeling that I’ve been to the dentist, and my face hasn’t “woken up” yet. 

It’s feeling at the same time like I’ve sat too long on my left leg, and like I have shingles all up that leg and abdomen.

It’s still not being able to do simple fine motor skills … like writing or putting on makeup.

It’s your neurologist saying he would have expected me to be further along by now. I “might want to look into a less hands on career … but you won’t be working for a while. We’ll reasses at one year.”

It’s having no control over your emotions. You’ll be perfectly fine, laughing even, one second, and sobbing uncontrollably the next.

It’s knowing this happened for a reason, but having no clue why. Why me?? Why??

It’s being at your absolute lowest point, but being beyond blessed by friends, family, and people you don’t even know.

It’s learning you’re a blessing to others, even though you have never felt worse about yourself.

It’s my existence.


————–

If you have any questions, feel free to ask. I’m an open book. I know I would be curious too.

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The Chemo Experience

What’s it like to get chemo?

Keep in mind, I *think* I get a pretty low dose, and it’s only once a month. I don’t have a port placement. I bet that would make a difference.

I also get chemo for CNS Vasculitis (or primary angiitis if you will). That may make a difference too. I have nothing to compare it to (thank God).

Taken from someone else, but basically true.

So does it hurt? 

Only the IV insertion and blood work hurts. Sometimes they have to stick my 6 or 7 times to get a vein that works. I end up looking like a bruised up drug addict … or pin cushion … whichever you prefer. 😊 This last time they got the IV on the first try … GLORY BE!! But, it was in a spot that would occlude (causing the alarm to sound) if I bent my arm in the SLIGHTEST.

Not me, obviously, but this is how it is EVERY TIME.

It made using the restroom and eating all kinds of noisy fun!!

I USED to have the perfect vein in my right AC (reverse of your elbow), but it has too much scar tissue now from too many sticks. It has pretty much occluded itself!

Obviously not me again. This is an AC stick.

Does it make you nauseated?

The answer ultimately is “yes.” They usually predose me with Tylenol (helps with pain), Benadryl (helps with crazy side effects), a steroid (I’m going to assume this also helps with side effects)and Zofran (an anti nausea medicine). I am usually good to go after this.

The one time they didn’t predose me with Zofran, I got flushed and nauseated. It was awful. They had to stop the infusion for 45 minutes, and give me the Zofran. NEVER AGAIN, I say!! I ask for it up front!!

Does it make you bald?

This is hit or miss for everyone. My hair was thick to begin with. About 3 weeks after infusions, I start to lose it in chunks, but if just looks like I have thinning hair. If you didn’t know me, I don’t think you’d be able to tell.

Now, my hair HAS changed textures. It is like straw, and it has hardly grown in the months since I started. So, that’s interesting. 😕

Fried hair. And THIS is after straightening it!

Does it make you gain weight?

Yes.

Technically, I’m gaining weight from the Prednisone, but the chemo is playing it’s part too. I don’t even recognize myself in the mirror anymore. Seriously. This is probably the hardest part, honestly.

What else does it cause?

For about a week of two after, I can’t control my emotions. It’s almost hormonal, like postpartum depression.

 I am also very fatigued all the time. If I lay down for any reason, I fall asleep.

 The neuropathy in my extremities is on hyperdrive for about 3 weeks.  There is a lot of tingling,especially in my left foot. 

I find that my symptoms, in general, regress during this time. I have a lot of trouble with bladder control (tmi?), walking, talking, etc. 

I have headaches … a lot. I hope this is the chemo, because headaches started this whole thing, and they scare me!

Does it take a long time?

Yes. It, in actual infusion time, takes an hour and fifty minutes for the zofran mix, the pre-flush, the Cytoxan, and the flush at the end.

However, you have to wait to get an IV, wait to get your blood drawn, wait on those results, wait for the Cytoxan to come up from pharmacy, wait, wait, wait. The process usually takes five to six hours.

What do you do while you wait?

Facebook. They have plugs, so we use them for our charging cords. They also have TVs at each chair, hung from the ceiling. So there’s that. They also allow food, so J usually gets us lunch. Fun, fun! Sometimes I sleep. It just depends how I feel.

Anything else, inparticular, you want to know! I’m an open book. 😊

Why? Why??

Gosh. I hate … I mean HATE … my nighttime meds. They make me crazy sleepy, and they give me wicked heartburn. 

Anyway …

Help.

I need a brainstorming session …  A come to Jesus meeting with myself, if you will.

I am NOT trying to get pitty, I’m NOT trying to get anything free, and I’m NOT trying to complain.

I need to make some money. I, obviously, can’t work outside of the house right now … you know, that whole partial dead brain situation I have going. I have been BUSTING my butt with Younique and Claudia’s Carolina Creations, trying to earn extra income to no avail. I have spent HOURS online researching, going live, posting, etc. 

Not even a comment.

What am I doing wrong? I am genuinely asking … although since I don’t get comments, it’s pretty pointless to ask. LOL!

I don’t understand how some Younique”presenters” earn thousands a month, and I can’t even earn a dollar. I don’t understand why 13,000 people (literally) will watch a little girl open a present or play with clay, but I’m lucky if I get one person to watch, let alone interact with me.

I don’t know what I’m doing wrong. 

OR … I need a legit way to make money from home. I have already been approached with EVERY multilevel marketing business there is. I REALLY don’t want to hear about any more. 

That’s another thing …

How come those WRAP people seem to make endless money and have endless followers, yet I get NOBODY? No. I don’t want to sell wraps or pills, I’m just wondering why. WHY!!?? (I’m not being snarky about these presenters. They are great, and have a good product. It just isn’t a fit for me.)

I just want to provide for my family. I want to not lose our lodging … which is quickly the way we are headed. I want to work. I want to work. I want to work. 

Like I said, I’m not complaining. I know that everything happens for a reason. I know there is a purpose for this season in my life. I just want to feel worth something, like I’m contributing. 

I want my mom’s bracelets to make it. She works so hard on them. They are so pretty. I want to work with her to sell them through social media.

See! Pretty!!

I love Younique products. I know they are on the expensive side compared to drugstore brands, but they are comparable to other name brand products. I hate the idea of home parties (just the words “home parties” turn people off). I want, again, to make it work on social media.

Look how pretty!!


I want this blog to take off. I know … it’s not really about anything … but it’s real. It’s not like I’m spoon feeding you some garbage. I’m not forcing a subject.

I don’t know.

Maybe that’s what I should be doing.

So, that’s what’s on my mind tonight. Why is nothing working? Why, I ask you?

Other than that … ’tis the season to pay it forward. Remember to be nice to each other. Make the world a brighter, more happy place to exist. 

I do everything I do, work as hard as I do, for my family!

Random Ramblings 

It is 1:13am. I probably shouldn’t have had that cup of coffee at 12:30am. I’m a night owl anyway, so it really isn’t bizarre that I’m awake at this time. I have to get these thoughts out of my head, though, or I’m never going to get to sleep.

This was last night’s coffee. I have this thing about coffee at night. Well, I have this thing about coffee anytime, really.


Where to start … LOL …

  • I keep pinning recipes to Facebook, full-well knowing I’ll never look at them again! I think I’m going to do a month of suppers made from Facebook recipes I’ve pinned. My kids won’t be down with it, but I think it would be fun!
  • I can’t believe the devastation in Gatlinburg. I am so thankful that downtown survived relatively unscathed, but I am heartbroken about the rest of it. To think, we were JUST there. The balcony where Nat sat looking at the view of the downtown below is now gone. The fall leaves I took pictures of have burned. The Highlands have been gutted. Hundreds of people lost everything. At last count, 13 people had lost their lives. Devastating. It happened so fast! I am, however, so happy to see the area coming together as a community to help. I wish there were more I could do!
  • I believe there are angels that walk among us. I also believe God whispers to people, even though they may be oblivious. I can not tell you how many times we’ve been helped, in the last six months, when I was ready to throw in the towel. I don’t want to call anyone out, in case they want to remain anonymous, but I have GREAT friends! I’ve made great friends through this ordeal! Friends of friends have come through for us, not even knowing they were helping. It may have been something physical, like food, or it may have been through a post on Facebook that seemed random, but was exactly what I needed to hear at that moment.
  • Also, all I can wear, basically, is leggings, and I’ve even had people come through with that!!
  • Which leads me to my next point … I tried to wear jeans for the first time in six months. It did NOT go well. Not only did I not have full range of motion (😊), but the texture on my left leg was unbearable. It is really hard to describe my post-stroke sensory issues. The strokes affected my right side, but I have numb feeling on my left side and right face. It has turned into a shingles-type pain if touched wrong, and jeans sent the pain into overdrive. I won’t be trying that again for awhile. Leggings it is!!
  • Why do some people make BANK with direct sales companies, but I haven’t had one sale in four months selling Younique? It’s a great brand. The makeup is good quality. I feel j am utilizing social media. I watch all kinds of videos from all levels of the company to get ideas. I’m not giving up, but it’s a bit soul crushing. I just want to succeed. I want to provide a bit of income for my family. I want to give my kids a Christmas. And, heck, I just want to succeed! What am I doing wrong? What else can I try? What else should I do? This isn’t a rhetorical question. I’m genuinely asking! 
  • Along those same lines, I’ve been working my butt off on my mom’s bracelets. I’ve gone Live with them on Facebook, I started an Instagram site, I started a Facebook VIP site, I advertise on Facebook (Literally. I’ve paid to advertise.) … nothing. This is why I say everything I touch crumbles. I try so so hard, have the best intentions, and I think I have good ideas, but the businesses just fail. This isn’t the first time.
  • I need to work on my disability. It is such a tedious process, and I need help. I hate to bother J or my dad. They have SO much else on their plates. We are about to drown though! It is just time and red tape … it’s the government.
  • It’s 2:06am now, and my eyes are shutting against my will. I guess the Benadryl and Melatonin have kicked in. I best scoot before I say something really stupid!

I love you all! Hoping you have a good day. Remember to be nice, even if you don’t feel like it. Especially this time of year, people can be nasty, hateful, and mean. Please don’t be one of those people. Spread love and kindness. Let’s make the world happier one smile at a time!!

Who knew a week could fly by ?!?

Has it really been so long since I have blogged? Yikes! So much for my promise to myself to write Monday, Wednesday, and Friday. It just got away from me this week.

I really don’t even remember why.

I did have Neurology on Monday, about which I did a Facebook “Live.” I saw the definitive MRI for the first time. I wish there was a way to pull it up and show you. Here is a generic one for reference.

GENERIC brain MRI. That heart looking thing in the middle is the brain stem.

The brainstem is arranged in like 2 hemispheres. On one MRI “slice” BOTH hemispheres were almost completely white. That is stroke … dead brain. It happened right where all the nerves cross, behind the eyes. 

I had one further down the brain stem on the right. I also had one higher up on the left (I think), and one even higher, like near the frontal lobe. 

Actually seeing it like that … I’m lucky the damage isn’t worse! I’m lucky I’m still breathing. I’m lucky my husband isn’t having to make tough decisions about what happens to me and what to do with my organs. I’m blessed. With as crappy as this is, it could be much worse!!  #blessed

Anyway … I was going to blog on Tuesday, since I was out of commission on Monday … but, the meds made me fall aleep before I got around to writing anything.

Wednesday I had PT and OT, which WORE ME OUT. I’ve never worked out so hard in my entire life. 

It was, however, probably the best OT appointment I’ve had! It was on OT who I hadn’t worked with before. She had me typing, digging coins out of putty, handwriting, printing … and I forget what else!! I was, understandably, too tired to do anything but lay in bed (and watch Christmas movies) once we got home. (Keep in mind, the process is long anyway. It’s like an hour and a half there and back!)

Me at OT. PT is in the same room.

Who knows what my excuse Thursday was for not blogging. I’m sure it was a doozy. I don’t even remember Thursday!

Friday we had the Asheboro Christmas Parade. Oh gosh, how I didn’t want to go! I knew it would wear me completely out. I was right … BUT … I’m glad I went! The kids needed to have me there, and it was good to see them enjoy it. 

J, the kids, Dad, and Dad’s Sister – Linda.

That was enthralling, I’m sure, but that was my week. 

I wish it were more interesting, but that’s it! With the exception of different doctors, it is the same …. always the same.

We DID go to Target on Sunday without the kids. Usually that would be so exciting for me: Christmas shopping at Target! However, it SUCKS when you have no money. In years past, we would have just thrown stupid stuff in the basket, not caring how much it was. This time, I meticulously had to go online for each item, and see if it was cheaper somewhere else.

It. Was. Awful.

We got a couple stocking stuffers I couldn’t find online cheaper anywhere else. I found myself resenting other shoppers. I wanted to shop like them. I wanted to be able to have a list of people to shop for. I wanted to buy for Christmas Angels. I couldn’t even afford gifts for my kids.

It’s okay, though. I’m alive. Everyone is healthy. We’ll make it. Some day I’ll be able to get for others again.

Be kind to each other. It could always be worse, and you don’t know everyone’s situation.