Hello. Is there anybody out there?

It has recently come to my attention that I have not written in a while. I think I have been avoiding it.

My body is about the same. I’m on oral immunosuppressants. This is in place of the chemo I did last year. They are great (I’m lying). Sometimes I wonder what would happen if I just quit taking all the medication they have me on. Sixteen pills a day, down to none. I mean, the doctors admit they don’t know if the pills are really helping. They are, however, killing my liver. Bonus, they may give me blood cancer down the line. I’m going to be honest, lately I have been obsessed with trying that cannabis oil that doesn’t make you high. A few drops under my tongue, and I’m good. I wonder if it would work.

Mentally, I am a bit unstable. I try to keep my spirits up, I really do try, but this gets SO OLD. I want to just flail and kick and force everything to just work out. I want to work again. I don’t want to be stuck, like a slug, waiting for life to just happen to me. I am not that person. I do the LIVE pearl thing to keep sane, and feel like I’m at least a functioning member of the household, but it’s all smoke and mirrors.

I just happened to turn on my phone today while I was sitting in the parking lot at the bank. I had been trying to find and gather together change to deposit, in an attempt to keep us from over drafting again. I happened to turn on a Facebook Live feed, I don’t know why, that was just starting. He didn’t say anything I haven’t heard before. He didn’t give some great revelation that I haven’t been preached at countless times in the last year and a half. It just hit me differently today. He said, “It may seem dark right now. You may be in a winter. But, this is a season. It will pass. I promise you, it will pass.” As I sat there with pennies and nickles in my hand, prepared to go in and make a measly deposit to save our banking account, the words hit me like a brick to the head. This is a season. It sucks now. It is awful now. It is the lowest of the lows now. But, we will get through this. It will eventually take an upturn. Please, God, it has to take an upturn.img_1553-1

So, to anyone that needs to hear it … You WILL get through this. It sucks now. I know it sucks. The season will end, though. This is but a season. It is the winter, and spring always follows.

I love you all.

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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.

๐Ÿ’œ๐Ÿ’œ

Sicky sick, Father’s Day, and wormholes

I have been so, so sick this weekend. Thank God J made me go to the doctor in Friday, because it would have only gotten worse, and I can’t imagine much worse. Everyone else had allergies, but thanks to Imuran (my immunosuppressant), it turned into bronchitis with a weird ear infection in the ear I can’t feel. Then I mixed that up with a little puking, and it just rounded out an otherwise boring weekend. I have to mix it up a bit sometimes. Now, I’m done with my turn on the Ferris wheel ๐ŸŽก of sickness. It’s somebody else’s turn to take a ride! (Nobody at this house!!)

This is what sick looks like.

So, once again, I am way behind in every aspect of writing in my life. But, guess what … it’s okay! It a new week, time for new starts!!
Father’s Day and Andrew’s birthday are coming up. Poor Andrew. It was on the eve of his birthday I first went to the Randolph ER by ambulance. (What a frickin joke all around.) So, I want to do something special for him this year. We don’t have the $$ to do what he wants (Wonderworks in Pigeon Forge). He has wanted that the last 2 birthdays, and thanks to ME, we can’t go. How do I break that to him again?!? And, what the heck do I do instead that’s fun, but cheap (or free is better)?

I mean, Come on!! How do I say, “We can’t afford it this year,” to that?!?

What about Father’s Day? Here’s where I get weird and superstitious. I had the perfect idea for my dad last year, even bought all the components, and then BOOM! Life changed. He never got his gift. And, J’s gift was spending time with me in the hospital. Yes, I’m scared. Yes, I’m stupid for being superstitious, but neither one is getting a gift until AFTER Father’s Day this year. I also have no idea for J. Neither of them are MEN MEN. Hunting, fishing, grilling, sports, all a nope for both of them. 

I don’t have a decent picture of them together, so here is a good reminder.

So I was looking around Facebook, at different sites, blogs, and pictures for ideas regarding this upcoming week? MAN!! There are some wormholes up in Facebook land!! I was reading (too long) about beets, and that brought me to bath bombs and crafts, which led me to house fires and sweet tea, which led me to Eddie Vedder (it ALWAYS comes back to Eddie Vedder), which lead me to Chris Cornell. Sad way to end my search, but it was 12:00am when I started. When I looked up, it was 3am!! What?!? Wormholes. They get you every time!! AND … I still have no idea what the week will bring!! It will be a surprise for all of us. 

Well, I have a date with dreamland! Until next time. Pay that stuff forward!! Be happy … life is to short. Make others happy. There is absolutely no need to bring others down. Remember, those that are abrasive with you are people too. You never know what they are going through in the background. Your’s may be the only smile and kind word they have all day. โค๏ธ

See you there!!

Normal is a double edged sword

Count me in the normal category again, if by only one crappy thing. I have never rejoiced and cringed at the some time before. I did today!

Tmi alert. I’m gifting you the knowledge that tabu subject matter is coming up right now!

*Fair warning … look away*

After TEN months of not having my period, after being told I had gone through early menopause, I *kind of* started my period today. Believe you me, I wrote this day in my calendar, because it is one more step to normal, which the doctors counted as done. Doctors are NOT always right … even the best ones.

*yippeeeeeee*

I never thought I’d be happy to have blood coming out my vagina, but I can’t explain to you how elated I was! That was quickly followed by Oh crap. Which was then followed by elation again.

*Oh crap!*

See, it’s not like I want more kids. In fact, I’ve been told not to have any, because the chemo altered my DNA. Then there is the whole oral immunosuppressant. Who knows what damage that is doing. But, I feel like a half-way normal woman for my age again! 

Just that minute amount of blood, three times I might add, made me smile. You don’t know what it’s like to think it’s just all over. To think you’ve been forced, again, into something you have no control over is dehumanizing. I rejoice and welcome the cramps this month. If my brain can remember to start my period (I don’t remember, does the brain do that? If not, don’t tell me. Let me live this fantasy!) … if my brain can coordinate my period to start, maybe there’s hope for my walking and talking.

*The brain bone’s connected to the uterus bone. The nose bone’s connected to the face bone …*

Thank you, Jesus, for small, disgusting miracles!! I could jump for joy! I’m on my way to becoming human again! Hooray for blood!!

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The beginning of the end … or the beginning of the beginning

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It makes me sad to look at my Timehop app from this week, last year. We had so much fun. It was perfect!! I went from three months of intense headaches, to this interim week. Only, I didn’t know it was an interim week at the time.

This week felt like the skies had parted. I had NO HEADACHE. I made the comment to my family, “Thank God. I think my headaches are done. I feel great!” We played in the sand, played at the pool, went out to restaurants, and just completely enjoyed each other.

I really think God let me have these days, because he knew what was coming.

I’ve been reflecting on this time a lot today. It wasn’t this trip, but the one coming up that will mark our last trip … my last moments as a completely functional human, my last weeks as an operating room nurse, my last weeks as a fully-involved mommy and wife.

It was after this trip that the vertigo started, the vertigo that everybody thought I was either faking, or just overworking myself and tired. The scariest time in my life. The time when I was dragged through hell by doctor upon doctor that didn’t believe me (Thank you, Amy Moon for being the ONLY medical personnel who believed something was wrong from the beginning!).

Forever, I referred to this time as the beginning of the end. I thought my life was over. I dwelled on the fact that I was a burden to everybody. I saw no use for my existence, other than to suck up every bit of savings we had for medical bills.

We had people coming out of the woodwork to help us, but when you are living in such a broken body, it’s hard to see the light. I appreciated every single bit of help we recieved, but at the same time, I was mourning the life I lost.

Gosh. That seems like a lifetime ago.

I was reminded today by a sweet friend, that it was not the beginning of the end, but the beginning of the beginning. My life has changed immensely in this year. I have started writing, something I’ve always loved but been too afraid to pursue. I am a free-lance writer for two sites currently. I also have this blog, help my mom and dad with each of their Facebook sites, and moderate for another site. All things I love, all things I would have never done if it weren’t for my world changing so dramatically.

I’ve also met some people online that are kindred spirits, who I would not know if it weren’t for this year of “hell.”

Looking back, I’m grateful for everything that has transpired this year. Do I wish I could walk, talk, and write better? Sure! Do I miss driving? So badly it hurts some days.  Do I miss being the mommy I was to my kids? Yes. Do I miss being an equal partner to my husband? Yes. Do I still have a long way to go? YES! But, I’ve also come a long way. I want to cry when I see videos of myself from when this first happened. I have come SO FAR, even if it doesn’t feel like it sometimes. And, it’s funny, but I wouldn’t take it back.

Occupational Therapy. Every week.

My life is COMPLETELY different now, but God knows what he’s doing. Sometimes it takes something BIG to get our attention. Well, He has my attention, now!

Bring on the next year! I can’t wait to see what’s in store for this “broken,” former nurse from North Carolina. 

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Homework I can get down with

Why am I dead tired, until about 11:30pm rolls around, then I’m not sleepy. Ugh.

Well, lovely followers, today was my second to last OT appointment. I spent half the time reassessing from my first appointment, and the other half crying. Poor Melissa, my OT. She said I need to get my mental health and wellbeing in check, so I can get better, so I can then take care of the things I need to take care of … like my kids. She gave me homework:

In case you can’t read that, #1 is an activity out of the house once a week, #2 is an overnight vacation, and #3 is a girls day with my besties!


I mean, it’s legit homework, I have to do it!! It entails J getting off work, and us selling off some stuff to afford to go, but go we will!! 

Just a “recommendation” of where we could go.


J, if you’re reading this … get four days off so we can go to Disney … although we would have to go when the kids get out of school … which is June, and I have sworn off Florida in June!! I don’t even have to go to the parks. You know … 2 nights at Animal Kingdom lodge or the Polynesian can do a soul good!! J could sleep, and I could write on the balcony. Then we could go to the pool for a bit … and if we stay at the Polynesian, we can watch the fitteworks at night!! But, if we stay at AK, we would have giraffes off the balcony. GIRAFFES!!!

Maybe I could bring one home!


Sorry. I got off on a tangent. Melissa also said I’m supposed to work on driving. (I can drive, but I can’t walk well. It’s weird.) I’m supposed to work up to 30 minutes of non-traffic roads, with J in the car. 

Roads like this


Anyway. As always, remember we are all in this thing called LIFE together. If we are kind to each other, it makes it go so much easier and harmonious. Nobody deserves a mean, bad attitude, so put a smile in that voice, and fake it ’till you make it. (It’s okay to have shite days, just don’t take it out in everyone around you).

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It’s been 10 months

I wrote this article back in December. I’m not going to lie, it made me a bit sad. I’m the one who lived it … is living it. It made me a little mad. Even small hospitals are trained to recognize stroke symptoms. It’s doctor/nursing/cna 101. They have posters in every room depicting what to watch for in case of stroke. They just didn’t. All in all, it took 4 months before they came up with a real diagnosis; 4 months before anyone, but my sweet primary care nurse practitioner, would believe there was really something wrong enough to do something about it!


It’s been almost a year now, 10 months to be exact, since my diangnosis. The doctors still aren’t 100% sure I have Primary CNS Angiatis, but they are treating it like that. Which means, they really don’t know how to treat it. I love my doctors, don’t get me wrong, but I’m tired of “trying” things to see if they work. I’m tired of seeing my mom break down into sobs, because she knows the reality is that I could die at any given minute. She doesn’t want to lose another daughter.


Now, I know God spared me. I am convinced there is a greater purpose for my life. I may feel angry, claustrophobic, and depressed some days, but God’s got this. I may lash out, scream, cry, and wonder why. God’s a big boy (no disrespect intended), He can take it. He knows I’m just weary … like a child needing a nap.


There is NOTHING I can fear that my God can’t handle. Psalm 91 is my mantra. I have to pray it, think it, dwell on it … I even have it stenciled on a wall at my house. 

If you don’t believe, I’m sorry. I understand. I grew up in a backwards, superficial religion (again, no disrespect intended). In many ways, that religion was my foundation, which is good. But, in MORE ways, it just confused me and made me question too many things. I recommend you read Collosians and Galations. Know this is a history book. This stuff happened. These chapters really hit home for me.

Wow … I did not mean to go all religious on you. By the way, I am human. I love Jesus, but I cuss a little (okay, a lot). So don’t think I’m ever a hypocrite or a fake. I fully admit, I have flaws. BIG ONES. So, just go with it. I’m always sincere, and will speak what I believe.


So, anyway, have a good night, day, or whatever it is where you are. If you need someone, I’m here. Be kind to one another, because you just never know what others are going through. 

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It’s Been Awhile …

My poor little neglected blog. It has been a crazy, fast, busy, full month!!

No more chemo!! I have never been so torn between happy and scared!


On one hand, chemo made me feel awful. It made my hair fall out, gave me peripheral weakness, and knocked me on my butt for two- three weeks.

On the other hand, I now don’t have anything suppressing my immune system. What’s going to stop it from attacking itself again?

I am still on the Prednisone (which is supposed to help), but they are tapering me off of that. I started at 80mg a day, and I am now down to 17.5mg a day. Yes, I can tell a difference. A lot of the stroke symptoms have gotten worse (headaches, droopy eye, trouble walking, trembling legs, etc). Does this scare me? Yes! I am constantly afraid that I am stroking again. Every little twitch, every little pain, every little difference, and my anxiety goes into overdrive.

Droopy eye, thinning hair, puffy …


Honestly, I felt closer to God than ever after this happened, but now I am a bit apathetic. It has been about six months since I went to church, for whatever reason, and I can give you a lot of reasons. You come at me with a reason I should go, and I’ll shoot you down with an excuse. I am embarrassingly fat, I can’t walk right, I’m tired today, people will want to talk to me, and I don’t talk right, I can’t stay focused, I get too tired sitting up …

Queen of excuses!


I finally went tonight. It reminded me that I had to fully rely on God when all this happened, and I have to keep leaning on him for support through my recovery. It is the ONLY way to make it through. He spared me, and kept me alive for a reason. I just have trust, and find out what that reason is.

There is a reason He got me through nursing school, and helped me find the perfect job, just to rip it away from me two years later. Maybe I was to learn perseverance. Maybe it was to learn compassion.

Something I have forgotten over these months. Like J says, “Just own who you are and trust!”

I just have to lean back in closer, and trust. My life has been changing over the last month or so. Maybe all this happened to get me to this point?

Who knows. I know I still have more days where I hate what has happened, and I feel trapped in a broken body. But, I’m learning again that I can be more.

Thanks for sticking with me. I’m exited to see what the future holds!!

I don’t remember where I got this photo, but so true!

Today

Among the most insignificant things that happened today, I had OT. We made the 2 hour trek, and I saw a new therapist. Nothing big.

While that was going on, our country was, literally, changing over the course of the morning. One family, loved by many, hated by some, was leaving the most famous house in America. Another family, hated by many, loved by some, was taking up residence in this same house.


As I saw bits and pieces of the coverage, I had mixed emotions. The presidency of the U.S.A. is about as close as we get to royalty here in America. I respected the process demonstrated today. I found the tradition beautiful, and it was interesting to see history unfold right before my eyes.


I was dismayed, however, at some of the actions and words of people I call brothers and sisters of this country. 


Agree or disagree with the choices made by the election process of this country, it is done. Spewing hate, insults, and threats will not change a thing.


We must go forward from here.

We must come together, across party lines, and work together to make this country the great place I know it can be; the country that nations used to look to as great.


If we stop the hate, move forward with positivity, and support of our neighbors, it will only produce a stronger, more unified front. We can be a country built on love and strength, instead of hatred and fractures lines.

Ultimately, it doesn’t matter which side of the fence you are on. It doesn’t matter what royalty figure has taken the powerful seat in the White House. Change, love, strength, positivity … even acting like the adults we are … it starts with us.

Be that love. Pay that love forward. Show the world we are still a united, great country.

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. ๐Ÿ’œ๐Ÿ’œ

RIP Clint Cummings