Staying present, the struggle is real ….

As you all know I can be a bit preachy at times. The reason I’m so preachy is because I firmly believe in what I’m saying and think we can all learn a little something from listening to others. No, I don’t think I have all the answers, but I do know I’ve made a boatload of mistakes over the years, which have led to a ton of wisdom. I’ve preached about many things. Parenting, friendship, living our best life through a chronic illness etc etc. I’ve also preached about staying present. Present in our lives, present in our families life so on and so forth.

To my chagrin I admit I hadn’t been staying very present as of late. I’ve been just going with the flow and kind of hanging out in the shadows of life. I mean damn I’m tired. The last almost 8 months have literally whipped my ever lovin’ ass.

I’m not necessarily apologizing for my hiding out in the shadows, but more giving an explanation as to how things have been. Is this an excuse? Absolutely f*cking not! We all get tired and sometime (out of self preservation) decide to sit certain things out. Rather than pushing ourselves when we’re not up to it. We can do this and not be ashamed for taking the path of least resistance.

With all of that said I was determined that Mother’s Day would not be a casualty of my lax attitude. The boys always do it up for me and as always they delivered. They decided we’d go to La Crema it’s a really nice tapas/wine bar that my eldest works at.

This is not my eldest, but my youngest Jake.

I will admit I almost cancelled, I was tired and sore. The day prior I fell in the yard, which is pretty damn embarrassing when you live on a busy street in the middle of town. Needless to say I was a cussing heifer when it happened. I wound up with thorns in my hands and knees from some type of horrid weed that’s started cropping up since the storm. I swear that storm was much like MS the gift that keeps giving.

Me and my silly little family. Kind of hard not to stay at least semi-present when you have characters like these to put it all in perspective♥️

So here I’ve been, all chill and shit, hiding from life (to a certain degree)and laying low. My sweet pups keeping me company on the regular, entertaining me and keeping watch. My dear hubby and sons working as always and me trying to get my hermaphrodite (an oddity) of an immune system to work with me. All the while trying to figure out if a new MS treatment is a good fit for me.

The newest is Mavenclad, my neurologist and myself are mulling it over. He’s doing more research and asking other neurologists that have used it on patients if it really is all of that and a bag of chips. After all, the drug reps just sell us all a dream and then don’t accept responsibility if the drug doesn’t work as well as advertised. I’m hip to their load of shit😉

Well it is spring, which is usually my time to shine, so I’ll give it a whirl and try to be more present. I will say, even when I’m hiding or laying low my life is pretty damn good and for that I’m grateful.

I’ll be going to the cardiologist later this month and I’ll be sure to update every one. As far as the Mavenclad goes, that is months off from what I understand, but I’m hopeful.

As long as we’re at least trying that’s all that matters. #nevergiveup #nevergivein #alwaysgiveityourbest #movingforward #onwardandupward

The things I probably shouldn’t admit,but will anyway٩◔̯◔۶

So I didn’t do a whole lot today with the exception of sitting in the travel trailer listening to the wind howl outside. I admit I sat there a little scared with my pups. Scared because the wind was literally moving the trailer. Needless to say I still remember hurricane Michael all too vividly

My pups weren’t as scared as the last storm/weather related issue. That for some odd reason calmed me to a certain degree, I always watch them to see their reaction in times of stress. Everyone was chill but me.

Last night was a shit show, I was tossing and turning all night long. I had a nightmare that a storm was coming and my sweetie wanted to go to a boat ramp to watch the atorm roll in. All of this was in the name of science, after all my hubby is the science guy. A physics teacher that loves his feild. In the dream we were in a beautiful condo several stories up. Oddly enough I was ok being up in a high rise, God knows I’m afraid of heights. But in the dream it was better than being ground level.

In my dream I went against my very strong feelings and went with Lance in our car to a boat ramp to watch the storm roll in. I remember getting very anxious, starting to hyperventilate. It was very much a nightmare. I was gasping for air and woke the same way, gasping for air. I woke and realized I was dreaming and all was good.

Well let me tell ya folks, it was a rough dream leaving me mad as hell when I woke up. I woke and shuffled off to the bathroom because I’m forever having to pee. Got back to the bed and Lance was up asking what was wrong. I told him of my dream, he said I was silly, and he’d never do that. He got up and walked the dogs. After all bad weather was coming and they need to poop and pee. Good hubby to say the least♥️

Well my day went on wind howling, me laying around like a lump on a log. Too afraid to do anything of consequence for fear I’d be in a position to where I couldn’t breath.

Lance finally came home, on time as always, but it felt like forever. I was elated to see him, we talked about dinner and decided we needed to go to the store for blue cheese etc. As quick as he said it, I sprang into action. Not really, but it sounds good and makes me chuckle as I write this.

We get there and it’s packed, thankfully there are scooters available. Unlike that shithole Walmart they (Publix) actually provide for their disabled customers.

The store is jam packed, wall to wall people shopping for Easter dinner. Well kiss my ass and call me Daisy. I was none too happy about all the people. It made things much too hard to maneuver through the store.

We went from aisle to aisle shopping, it was congested but it was working in the scooter for the most part. When all of a sudden some woman walked in front of me looking dead at me and not even apologizing for being a rude asshole. I was livid, she just casually walked in front of me in her ridiculous frock, like she was someone of importance and deserved to be let ahead. When I say this lit my ass on fire I’m putting it mildly.

This woman acting like that infuriated me. I made sure when I saw her several times throughout the store to say something about her and her ridiculous dress to where she could hear it. I probably shouldn’t think this way but she came really close to getting a foot run over with a scooter. Sorry not really. I may be hypersensitive right now and I’ll try and get my attitude right but she really rubbed my ass raw. Never on my biggest asshole day did I ever act that way. She really better hope I never run into her on a good day, because it won’t be a good day for her😉

Before posting this I had my sweetie read over it. He said it was a bit strident and I may want to rethink what I wrote about that goofy woman. I chose not to, if I’m anything I’m plain spoken and will be true to this blog, that you can all be assured of. Life can be stressful at times and tomorrow will hopefully be better than today.

Keep it positive folks, every day is filled with possibilities😊

#crankygirl #stillsassy #alwaysme#MSbadass

Lying your way through chronic illness

So a week or so ago I was talking to a dear friend who also suffers with MS. She was upset because she was having cognitive issues while talking to her little one.

I hate to admit I almost told her not to let her child know that she was having an issue and just play along. In my head I replayed how time and time again I have muddled my way through conversations with my kids and loved ones not really fully understanding what was being said.

I’ve done it at work, I’ve done it at home, I’ve done it with Dr’s. I thought to myself damn I would have to be the best BSer of all time. I almost told her don’t let your daughter know you’re struggling. I did that for years, I’m glad I thought better of it as that is shit advice. Don’t do as I do folks, do as I say. Now in hindsight I see the error of my ways.

Sometimes we lie, sometimes they’re big lies and sometimes it’s little lies. None the less they’re still lies. Lying will bite you in the ass one way or another. We do it to save ourselves from having to explain the struggles involved with MS. We do it to save our family members from having to see the true severity of our disease. We also do it to save face. I know in regards to myself I’ve lied just out of pure pride. I don’t want anyone to think less of me. After all Ive always had my cute outfits and a face full of make up. Why should I let on that I was struggling?

I felt as long as I could keep things under wraps I wouldn’t have to face the truth. I was good with not facing the truth. My boys didn’t have to face the fact that their little momma wasn’t in the best of health. We all carried on like any other normal semi-dysfunctional family does.

We laughed, sang, danced and carried on. Had fights, told each other off and loved deeply, when we weren’t telling each other off that is. It was fun. I remember feeling like (even though I was fibbing to everyone as well as myself) I was winning at life in general. To this day I feel like I did pretty good with my little charade. With any lie there are repercussions. When I finally couldn’t fib it away everyone was pretty surprised, my kids and hubby were and are rather concerned. I think had I eased them all into this earlier, it wouldn’t have worried them as much.

I do have to admit I’m feeling a lot less pressured these days, not having to put on the brave face. It’s a shit load easier than pretending. To be real honest I don’t think I could fake it if I tried.

The newest uphill battle has left me out of breath and dizzy. So much so that I almost fainted in that shit hole Walmart the other day. God knows if I fainted there I’d just die. There weren’t any scooters available and we needed to get groceries, I figured what the hell, we’ll give it a whirl. This was a HUGE mistake.

Lance and I were in the dog food aisle (of course) when all of a sudden everything started spinning. Then the heat ran up from my feet leaving me feeling sticky and gross. I leaned over the grocery cart and told Lance we HAD to leave! We got through check out and got to the car. Me still winded and feeling like death, wondering why on God’s green earth can’t I just get through the fucking grocery store?

As we left I thought to myself I can’t do this shit any more. I thought there has GOT to be an easier way. I mean what do other handicapped people do when Walmart is out of scooters? I’m a problem solver if I’m anything.

I thought long and hard and made a decision to get a scooter. If anything I won’t be so limited and maybe can get out a bit more. I can also avoid having to sit in a scooter that someone left their germs on.

This decision was not made lightly. The other day it broke my heart to tell my son I just couldn’t go to Books a million with him. The thought of gasping for air while trying to fight fatigue and balance issues is down right terrifying. In the past any time my kids asked me to go and do I was damn sure going to take them up on it, now I just can’t.

If that wasn’t enough I’ve cancelled lunch plans with my girlfriend Lisa several times. To say that really upset me is an understatement. She is such a positive warm hearted person and so much fun to be around, definitely someone that brightens my spirit. The thought of passing out while out at lunch is mortifying to me, luckily she’s a great friend and understands.

So I made a decision, I asked my PCP to write me a script for a scooter. We went over the Walmart incident as well as a couple of other instances. He agreed I needed a scooter. He went on to say he didn’t feel it was my MS, but more congestive heart failure aka dilated cardiomyopathy. He also said he didn’t think I needed to exert myself in any way until I get cleared by my cardiologist.

I have several tests coming up and I trust my cardiologist 💯 as I do my PCP. As unnerving as it is for me to get a scooter and limit activity, I’m happy to possibly be able to get around with ease.

I was talking to another girlfriend and she said she looks at things like a cane, scooter or walker as a tool. I liked that, I can do this and have a big time while being out and about. I damn sure want to live the best life possible, and by golly I will!!!

Life is a gift meant to be enjoyed, not hid away because you have to use a tool or equipment. As much as I hate the looks, you can all rest assured the first pity look I get, will be getting the bird flipped to them. 😉

#stillsassy #stillahellion #MSbadass

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.

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. 🌼🌸