Not letting the realities of MS chip away at your core being.

Don’t I look like a chipper little gal in this pic? Looks are deceiving folks. Although I’ll always be a glass is half full kind of gal, to say I’m chipper these days would be a farce.

Life is still good and I firmly believe God is still great every single day.

I will admit that sometimes the realities of this crappy disease gets the better of me. Well before the storm (hurricane Michael) kicked our ever loving asses my MS has been taking a toll on me. The past two years have been extremely hard.

I’d be lying if I didn’t say the hurricane left an indelible stain on my soul. It was hard and still is. It hasn’t gotten much easier. Still waiting for insurance and still hoping to get this rebuild under way.

Living in a travel trailer is far from easy, with balance issues making it very, very hard to get in and out of. I’ve noticed more and more that I rarely venture out, purely out of pure dread due to the couple of steps leading to the free great world and my front yard.

With all of that I maintain my semi positive attitude. I admit it is difficult and sometimes frustrating. While I used to have a pretty positive attitude, I find myself a smidge cranky and a bit less patient these days Things are NOT settled and far from over in regards to that shit show of a hurricane.

One of several things that still make me laugh and smile are my fur babies. Thank God for them or I’d surely have lost my way. Between them, my hubby and boys life is still good. While all of this there’s still Dr. appointments and meds, neither the dr. appointments or meds make me happy at all.

There are still new meds being released and new findings regarding the ones already released. There’s data and side effects to go through before jumping into one. As the years have went by I’ve become more and more hesitant to jump into the new drugs available, as they all come with side effects.

What’s good and what’s not is the question. What side effects I am willing to deal with and what meds would interfere with other conditions we face.

Here lately I’ve been dealing with breathing issues and dizziness that has really and truly make me too scared to do anything that requires too much walking. Too much being, anything over a few feet.

After just about fainting in the yard while talking to a girlfriend I decided to go to my GP. I don’t want to put everything on my MS. I highly suggest anyone else with a chronic illness do the same. We can’t just assume it’s our chronic illness that’s giving the current issue. Many have made that mistake and suffered for it.

We can’t think it’s the chronic illness we suffer from getting the better of us. We need to have someone else look at the big picture, not just the chronic illness picture.

So I did, I went to my GP first to tell him what was going on. He went over everything I had going on and felt it was possibly the cardiomyopathy I had been dx’d with over 2 years ago. After going over everything he said you may possibly need a defibrillator placed to make sure you don’t suffer congestive heart failure. While he talked I thought to myself great another BS thing to deal with.

My GP set me up with the cardiologist I saw two years ago. The one that said I suffer with cardiomyopathy, but also said my cardiac cath was that of a 20 year old with no plaque in the arteries.

The cardiomyopathy was probably because I took Novantrone back in 2009. It was a type of chemo to slow down my MS. It worked for a little bit and can’t really complain due to the fact it did what it was intended to do.

The following week I went to my neuro, we went over the newest meds on the market for SPMS. While going over the newest DMD he let me know the newest Med was nothing more than a glorified Gilenya.

Not sure if you guys remember, but that particular medication (Gilenya) led to a trip to the ER via EMS. Talk about a shit show. He said with my cardiac issues I shouldn’t take the newest hot medication.

I appreciate his conservative approach with me. My last neuro would have let me do that medication and then claimed ignorance. Not sure if he was really just that ignorant or lacked care and compassion. Regardless, he did not have my best interest at heart.

As the visit progressed me and the hubby talked to him and he answered any and all questions and was a wealth of information. We also asked him what he thinks my EDSS score is. We went over many different things that I deal with on the regular, his final answer to the EDSS question was that I was at a 7-7.5.While this did not make me happy in any way shape or form, I will say I appreciate his candor. It is what it is after all.

After talking with him I had to do a urine test, as the nurse talked to me about insurance etc I couldn’t understand what she was trying to relay. I looked at Lance for answers and she gave me a look like I was an ignorant bitch. Well let me tell ya this flew all over me. I couldn’t believe she was making me feel like an idiot. If I had a bit more strength about me I would have laid into her. Instead as she walked me to the bathroom I let her know in a very stern voice that I’m not an idiot, but have cognitive issues and genuinely didn’t understand what she was saying. When I came out of the bathroom she had a completely different attitude.

My point to writing about that is have patience, you just never know who you’re dealing with. If anything I’ve been considered quite the quick wit in my day and far from stupid and still am just in a different way.

So in the past couple of weeks I’ve had the displeasure of using scooters at the grocery store. Does this please me? Oh hell no. The look of pity or the people trying to ignore you is unnerving at best, but I’ll keep on keeping on, making the best of what I can do and saying FU to the looks and ignorance I encounter.

Sorry if this isn’t my lightest of blogs, but hey at least I made the effort.

Still chipper, just a little edgy mixed in these days.

God is still great and life is still good. Do something kind for someone, it will make a difference. I know it makes a difference when I encounter it.

#850strong vs. #850tired I’m both

As you all know my little area of the world (Panama City) was hit by a hurricane approximately 4 1/2 months ago.Hurricane Michael left this area devastated.

This storm left people homeless as well as unemployed. Many people left the area in search of affordable as well as safe housing. The school district lost 30% of their school base of students. I read somewhere that the district lost 161 teachers as well as many that worked as support staff.

This may sound like silly numbers that really don’t impact people. What people don’t realize is, is that it really does. It effects funding for our school district. As hard as our district leaders work to provide for our schools, it’s never enough. With this recent tragedy it will be in worse shape than before. I have to give Bill Husfelt HUGE props for asking to cap the FTE to prior hurricane level. He asked, and now we wait, this is a state issue and NOT in his hands.

People have moved due to not being able to obtain affordable housing. Rentals have doubled as well as tripled in some cases. At this point it’s a matter of supply and demand. A lot of previous home owners are having to rent due to damage to their homes.

In defense of the landlords they’re having to make repairs etc to their rental properties post hurricane Michael. We also have some that are just plain greedy and are taking advantage of the bad fortune of others, leaving a lot of people homeless.

What I’m taking forever to get to is the reason for this entry. I did a thing, that thing being an interview with a news station out of Louisville Kentucky. A girlfriend of mine tagged me in a post about hurricane Michael and the effects on the community. My response was “I’m not #850strong but I’m #850tired”.

I made that statement because it’s the truth. After all this time and still living in a FEMA trailer looking at my roofless home is wearing on me. While I’m very appreciative for the help the fine folks at FEMA gave, I’m incredibly exhausted and feeling a bit defeated at times.

The news station (WDRB) contacted me asking if I would do an interview. I figured why not? Why not let people see the precarious position the people of Panama City are REALLY in.

https://www.wdrb.com/in-depth/hurricane-michael-s-wrath-still-evident-in-panama-city-months/article_7685cbce-33af-11e9-bba8-9b7d66746a73.html

I did that interview for so many reasons. I felt the local media portrayed us in an unrealistic light. While we ARE #850strong we are also #850tired.

As embarrassed as I was to air my personal story, I felt the people of Bay county deserved for the story to be told. There are so many others just like me and in the same predicament. People in the Panhandle aren’t looking for a freebie or a hand out. We’re just looking for a light at what feels like an endless tunnel.

I did this interview to bring awareness, not for personal gain. I’ve never been one to look for charity as everyone that knows me knows. I’ve pulled myself up by my bootstraps on more than one occasion and will continue to do so. With that being said I will say, I feel my community has been short-changed and feel as passionate about bringing awareness to this situation as I do about bringing awareness to Multiple Sclerosis.

I was #850strong before it was the in thing and will be after we rebuild, but for now I’m #850tired and not ashamed to admit it.

This is what P.C is about

My boys, hubby, and I as well as this community will rise to the occasion.

I may have come out a bit preachy during my interview, but I legit feel this way. My faith has seen me through before and will again, still a hellion and still me. Making no apologies or making excuses. I’m me always have been and always will be.

This is my town, this is my home and by golly we deserve not to be left in the dust.

Mardigras 2019 Panama City with many more to come.

Keep Bay county alive. We may be small but we are fierce.

To dye or not to dye. It’s a confidence thing 😉

In today’s entry I’m going to go into a subject that we all need to address the older we get.

That subject is being comfortable with yourself, as well as the changes our bodies go through with age.

It’s it’s difficult enough going through multiple sclerosis for the past 15 yrs. God knows that has brought enough challenges. Going from fairly healthy to horribly sick at times over the years. Walking and running to walking with a walker or cane. Having RRMS to SPMS. The uncertainty of what tomorrow holds is daunting at best.

While doing my level best to keep MS at bay and enjoying every moment of my life, along with balancing the precarious moments MS can bring. #thestruggleisreal

I have lost a ton of muscle since progressing and my body changing with age. Don’t get me wrong, I can still hold my own and dress up pretty good, but to say things have shifted would be an understatement.

I’m ok with that. After all I’m 48 and don’t pretend for a minute to be any younger than I am. I’m proud of my age, I’m proud I’ve been able to make it this far. Not that MS is life threatening, but life in general is life threatening.

There are ups and downs and ins and outs. If we make it another year we should be proud we made it through. Every year should be a celebration of life. Not something we hide out of shame and not the celebration we do when someone passes. We should celebrate the here and now. Every year is an accomplishment, every year is a gift that some don’t get.

A couple of years ago I thought about going grey. I broached it to several people. My hairdresser being one of them, she said “ohhh noooo don’t do it. You’re too young looking to go grey. It will age you”. At the time I listened and decided to dye again.

I used to dye every 2-3 months. It was a pain, but I figured I should go with popular opinion. Now I need to do touch ups every month. That just seems like an epic waste of time and energy. I never went to my hairdresser for anything more than hair cuts. God knows anyone that reads this blog, knows I’m frugal, if I’m anything. So I dyed my own hair for years in hopes to look a certain way. To appease the naysayers.

Well ya know what? I’m 48! Chances are I’m not going to have dark brown almost black hair at this age. Who am I fooling? No one that’s who. That and the damage it’s doing to my hair is just a no go at this point. I see a lot of older women that color their hair, with the end result being damaged looking hair. It doesn’t matter how much you condition, hair changes as we age. It has to do with hormones etc.

I’ve said in my younger years that I’d never be that lady. Ya know the one that dyes their hair or dresses like a youngster. I always said I wanted to age gracefully. Well I’m at the point in my life that I’m ready for that gracefully aging part. I’m proud to be 48 and proud to have gotten the opportunity to get to this point. I’m confident at 48, probably more confident than I’ve ever been. I’m not worried what other people think. I like the person I’ve become. I may be sick and I may have bad MS days, but I still live a charmed life. My husband and kids and let’s not forget pups, all give me more love and affection than any one person should have.

No I’m not saying pull out your moo-moo’s ladies. I know I’m not. I’m just saying dress tastefully and age appropriate. 😉

I’m definitely NOT knocking women that dye their hair. If it makes you feel good that’s great. Just don’t come at me with grey shaming, that wouldn’t be a good go. You do you, and I’ll do me. After all we’re all different, and that’s a good thing. What a boring world it would be if we were all the same.

So I’m going grey and hopeful I can rock it, like I see so many others doing. Wish me luck. I’m about an inch there now and I’m excited. This is a new chapter in this crazy life of mine and I’m stoked.

My sweet hubby is encouraging me, telling me I’ll be a “silver fox”. This always gets a chuckle. He’s an awesome hubby and he always has my back. We drive each other bonkers at times, but damn, we’re a hell of a team♥️

So the hubby and I are slowly making progress with my general contractor and public adjuster and God willing we’ll have the house rebuilt soon. As grateful as I am we have the travel trailer, I know me, the hubby and my pups will all be happy to be in the house again.

Let’s keep it positive folks and happy Tuesday to you all.

Reinventing yourself and chronic illness

In today’s piece I’m going to go over what it truly means to reinvent yourself and how important it is to do while battling a chronic and progressive disease such as MS.

I’d have to say that I’ve (to a certain degree) reinvented myself several times over the past 48 yrs of life. This wasn’t necessarily due to MS but just changes in my circumstances. Over the years I’ve been able to meld into the different situations life has thrown at me.

I went from Sandy from Brooklyn (childhood nickname) to Alex (my full name being Alexandra) living in Panama City Fl. I went from selling cars to selling real estate to dispatching police and fire and answering 911 calls.

I’ve went from being Bobs wife to Bobs widow. I then went from being Bobs widow to remarrying and moving on with life. I went from being able to pull a 12 hrs shift to struggling through a 10 hr shift. Then from there went from RRMS to SPMS. I went from being highly employable with a great work ethic to not being employable at all because of the severity of my progression. That progression leaving me barely able to remember meds, bills etc.

Throughout all of the different situations life has thrown at me I’ve been able to keep positive and hold on to faith and my beliefs, which have brought me through it all.

I also went from having a nice safe home to live in for the past 18 yrs to having to depend on FEMA to provide me with a travel trailer that has been placed in my front yard until my broken home is repaired. By the way, I have never even been camping so this is quite the eye opener.

This was a humbling experience to say the least. (I’ve wrote in regards to MS in the past) I was on top of the world and then my applecart was over turned and I was brought down a notch. I truly believe these humbling moments are meant to teach us.

While I wish this hurricane never happened, I know I’ll learn something from it. Like when I was dx’d with MS after being fairly healthy my whole life to having to wrap my head around this disease and learning how to rehab my legs and arms many times over the years.

My girlfriend Melissa always says life is on life’s terms. This is 💯 true. We can put the effort in and always strive to succeed but we also have to be able to meld with the different struggles life puts forth.

I was speaking with a girlfriend via txt who is pretty new to the MS dance Ella-kate about how difficult it can be, but we can take the negatives MS throws at us and work through them in hopes to make it livable.

While I used to be able to play off not being “that sick” to now actually “looking” sick. You can actually see the weariness in my eyes. I’m tired and now “look” tired. Not having a pity party, but the facts are the facts and I’m ok with that. I mean jeez It’s been a long time.

The point to all of this is to point out that we have go with the flow, learn from the different situations. We need to learn as well as grow from all of the experiences given. We should try our level best to meld and embrace the changes life brings and handle them with grace and a fierce determination to not give up. I hope I put that front and center. Even though things are ever changing, I’m going to put my spin on things to take whatever positive out of them that I can.

I’ve likened myself to a chameleon before, changing with my surroundings. This isn’t a bad thing, but a very important lesson. We have to change in order to learn and move forward. Change is scary, but doable.

This is my first blog in a while, I’ve been super busy as well as a bit emotional about the whole house/hurricane thing. Hoping this gets my thoughts across about change.

This was my sons room, I had his painted for him when he was a little guy. It made it through the storm as did I 😉

Let’s make it a good one folks and Happy Thursday. Put good things in the air and good things will happen. 🌼🌸

My heart overflows.

Today was a rough day. There’s no getting around it. It was cold and overcast in Panama City. Cold is NOT my friend.

Thanksgiving was nice but I was glad to be done with it. I am so very ready to be moving forward with things.

Back to my original thought…. sorry I’m like a squirrel on crack these days. Staying on track is getting harder and harder. I’m sure the overwhelming things my family and I have endured have played a part in my scattered thoughts. It is still unnerving and upsetting.

Today Lance and I woke determined to get more accomplished.I received a call from AmeriCorps letting me know they were en-route to our house to remove more debris.

Lance and I got up and started moving about. He walked all three pups, while I made calls.

I made my call to FEMA, at which time they let me know without the counties inspection the power company would NOT come out and we could NOT move in.

I then called the building Dept. I spoke with a man who told me they are closed in observance of Thanksgiving. I started crying to this man that I HAD to have a sticker on a new power pole or we could NOT get hooked up or move in. As I cried to this man I felt like a complete idiot. I am a strong woman, but even the strongest are subject to tears when overwhelming things occur.

This hurricane has been overwhelming at best for me. This man was very patient and very, very understanding of my plight.

He took my number and address and told me he would work on it. I truly did not think he was really going to do anything. After all they are closed today, and why should this person work for free?

Well lemme tell ya, he called back and told me he had someone going to my property to inspect the pole. I thanked him profusely! I also wrote to the local paper and the news station to let them know about him and his dedication. This is what I wrote:

just wanted to let you folks know about Rick Holmes who is in charge of the building Dept. A kinder person I have yet to encounter. This is what I wrote on my FB regarding my interaction with this man today:

HUGE shout out to Rick Holmes!!!!!! Spoke with him this morning about getting an inspection sticker for our power pole. As embarrassed as I am I broke down crying when he told me they were closed today. He took my address and said he’d work on it. He absolutely sent someone out and we have our sticker. Power should be on later today for us to move in. Thank you JESUS!!!!

This is one of the many kind people that make this county 850 strong.

I don’t know him personally, but the fact that he took the time to call me back and had someone come out to do the inspection speaks very highly of his level of compassion and care he dedicates to this little county.

Sincerely,

Alexandra Pierce-King.

Unfortunately we could not move in until Gulf power and FEMA came out, which didn’t come to pass.

Such is life. Everything in God’s time. While outside I had gotten very dizzy, tired and spastic.

I wound up telling Lance that I needed to go back to the hotel to lie down. I got back, got right back into my pajamas and laid down before I fell down.

My hubby was txting with his youngest, Marci. She is a sweet young lady, and she’d invited us to Thanksgiving, but we didn’t go. Between the 3 dogs, Daisy having an upset tummy, and my being so sad, we didn’t think either of us would be very good company.

Had Jake not come and drug us out the door, we probably would have just stayed at the hotel ignoring the holiday all together. We did appreciate Marci’s invite, it meant a lot.

Lance and I really need to make more of an effort to go visit with them, it’s just really hard even on good days it seems. Not feeling sorry for myself, just stating the facts as I always do.

As I was laying in bed messing around on FB, Marci messages me and asks if I like dresses or skirts and what my size is. I told her I wear both, although rarely go out so to please not spend money on anything for me.

She tells me there is a lady that is donating Lou La Rhue clothing to hurricane Michael survivors. I have heard great things about this brand. I’ve heard it’s very, very comfortable. These days comfort is key. Marci messaged me and the lady donating so we could have a group chat. I gave all of my info and should be expecting a package soon. I have to say Marci went above and beyond and I’m so very appreciative.

Lance and I are some really lucky parents. We did something good having our offspring and it’s coming full circle.

Today was a rough one as I said earlier, but tomorrow is another day filled with possibilities.

As I sit….

As I sit on this Thanksgiving Day. I think about my boys and my cutie patootie hubby. That is what I’m thankful for this thanksgiving day.

I refer to a them as duckies or turkeys on occasion. These boys aren’t just turkeys (every day folk/friends). They’re my ducklings.

My sissy Terri called them that (ducklings) because when I walked they always followed in line with me. Kind of like little sweet ducklings.

My ducklings…what a wonderful description of some wonderful children. My sissies descriptive skills were spot on. A more colorful woman I have yet to meet. She is greatly missed.

Don’t get me wrong they can be asses as can I. They come by it honestly, I’m an ass as are they. We say what we’re thinking and worry about the consequences after. I have to say it’s part of our charm. If you don’t like it then get to steppin’. .

We are definitely a tell it as we see it kind of people. Nothing to be ashamed of at all in my opinion. We’re not for the weak of heart by any means. We’re opinionated and hard headed, passionate and mouthy. I’ve raised them that way and I’m proud of that. I’ve raised strong, and confident young men. They are my greatest accomplishment by far!

The level of confidence they have far exceeds what I had at their age and to be quite honest still exceeds my confidence level.

Their resilience I would have to say they have absolutely learned from me. They’ve seen me struggle sick and tired working regardless of how I felt. We’ve been through it and have always comes through smelling like a rose.

After all, tough times make for great people. We’ve had more than our fair share of great times, but we’ve also had our share of hard times as well. All of these things WILL make us better than before! My kids prove it every day.

Today was a really rough day. Lance and I went out to the house and property that also houses our newly acquired FEMA trailer. It still hadn’t been hooked up to power and still isn’t cleared to live in. I’m hoping it will happen this week.

I admit I was a bit bummed and not wanting to do any Turkey day fun. Depression setting in? Maybe, it’s been a hell of a month and a half. Home gone, memories scattered about etc. all of this had me a bit sad.

I’m a always of the thinking the cup is half full, today I felt it was half empty.

My body hurting and MS kicking my ass added to the stress. After all who in the fuck wants to do any celebrating when they feel like dirt? Feet burning numbness spreading and I was like why I’m the hell bother???

Then I got a call from my youngest Jake. He wanted to go see his brother and wanted to drop off food from his best friends Momma.

They’re super sweet people. I’m assuming Jake told them how I didn’t want to go out to eat. He had wanted Chinese food, but me? I HAD to have turkey for it to be a TRUE thanksgiving holiday.

I think that boy made a concession to make sure I had what I wanted for my fav holiday.

Thanksgiving has always been my fav holiday. My Mom and Da always made Turkey day the best!!!

Btw you don’t know a true holiday until you spend it In a Hispanic household. There’s awesome smelling food, tons of laughing and dancing and singing. Man do I miss my younger years. Best years ever!!!

Although as much I hate to admit I was feeling sad and maybe a bit sorry for myself and my community, I thought of my boys who always (much like myself) try to make the most of a bad situation, I was going to pull my head out of my ass, stop feeling sorry for myself and pull myself up by my bootstraps and keep on keepin’ on.

God’s plan is God’s plan, life is going to keep on keeping on regardless.

So while today wasn’t perfect, it was perfect given the situation and I’m still thankful I have a great husband and kids. Yes they all work my last nerve but they’re a life saver in any situation.

If I had a dime for every time someone said…..

As you all know things have been pretty crazy for this gal. I’ve blogged about some of the things going on during and after hurricane Michael kicked us in the teeth here in Panama City Florida.

Needless to say this whole thing has been a lesson in patience as well as giving it to God and trusting in him.

Yesterday I was stressed beyond belief, worrying about housing until the house is fixed or rebuilt. Things are still a bit up in the air because we haven’t received the structural engineers report.

The FEMA assistance runs out today. I’m trying to hold onto everything we can to replace furnishings etc. I had been scrambling all week trying to get answers from them about what I can do to move the process along. I am in no way lazy and will turn in whatever documentation they need. No answers had been given. I got a lot of “ma’am someone is working on your case and you should hear something within the next couple of days.”

So I feverishly prayed on it. Later in the day I got a call from the FEMA site coordinator saying he needs to meet us at the house today @ 2:00. You can bet money I’ll be there with bells on.

Fast forward to today. I woke up and my feet were completely numb. Usually it’s only a couple of toes and the side of my right foot. I waited and waited thinking maybe it had something to do with the way I had slept. I took a shower, not a hot shower just a warm shower and the numbness started spreading.

Oh joy MS the gift that keeps giving. If MS was a person I’d scream keep your bullshit and leave me be already!!!! Unfortunately my MS is MY problem and I have no one to yell at.

So I talked to my boys and tell them of my numbness one says ” maybe you can take a warm shower or a bath” To which I quickly explain that would be a bad thing for me to do right now as it may make things worse. He then says to lay down with my feet up. I guess he doesn’t realize how much I already lay down. If that would help I’d be fine a long time ago.

Talked to the other duckie that said well you have had it for soooo long, in other words be grateful. I AM very grateful to still be ambulatory, but that doesn’t make this feeling any less scary.

Surely I didn’t get through that hellish hurricane unscathed only to lose my mobility.

So my thoughts on all of this are I’m going to give it to God and hope and pray for the best. After all it’s all his will anyway and that I have to trust in.

I’ll end this with an interactive question. What do people say to you that drives you bonkers? I understand people try to help but sometimes…….

I apologize if I’m a bit cranky in this entry, just a bit over MS and all that comes with.