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Conflicted…

I woke this morning with my sweetie tending the pups. As he shuffled them out the door to got them in the yard one of them of course got squirrelly and he had to raise his voice.

Pretty sure it was Daisy acting like the lune tune of the bunch. She is truly the most rambunctious of the group. Lance seems to understand that with her like he does with me. She’s such a hellion that she’s managed to hurt her leg. I’m sure she did this by flinging herself off the top step of the travel trailer. She is always ready to go run, play and raise hell in the yard. Making sure everyone in the area knows Miss Daisy Mae is on the job.

I have to say him taking over morning duty with the dogs is much appreciated. He really is the bee’s knees of hubby’s. I appreciate him more than I can say, but there’s this little nagging part of me that hates that I can’t do with my pups like I once did. To say that life has changed for me would be a HUGE understatement. I have always been the keeper of the dogs. I used to have the energy and patience to train and play. These days I’m too winded to do any real training. I remember back in the day teaching Hamm how to ride a skate board, play dead as well as numerous other tricks. These days I’m doing good if I just open the door to let them go potty.

Another area of my life has me conflicted is dealing with family that doesn’t quite get it at times. I had a conversation with my youngest this morning. 27 year old Jake or Jack as I call him when I’m annoyed with him. He asked what my plans were for the day (as if I do anything besides sit here) I told him I had yet another Dr appointment as well as 2 next week. I went on to say I’m tired of going to all of these Dr appointments for nothing. They can’t really do anything for me, so why am I paying 65.00 each time I fucking go? Dr’s haven’t done anything for me thus far and it’s an epic waste of time and money.

My sweet little Jack responded with “Mom STOP being negative”. My response was “I’m the most positive fucking person I know!!!!” Yeah ….I know not my most shining moment as a parent. But dear God can’t I vent without being called negative?

In my case I really don’t feel the dr’s do anything to help my situation, but I play the game because I don’t want anyone perceiving me not going to the Dr with giving up. I am absolutely NOT that girl! I do not have that mind set to even allow myself to give up.

So I’ll continue going to the Dr and playing the game to appease those around me. I’ll apologize to Jack for my ugliness this morning and I’ll keep on keeping on. I’ll always be the gangster girl my dad and mom raised.

My question to anyone that reads this silly little blog is, why are we perceived as being negative when we’re just being realistic?

A month or so later: doing Mavenclad and doing my thing, positive about this med and still realistic about my disease. Life can be hard more times than not, but it’s still a gift.

God is still good and life is still awesome and I’ll keep being the head girl in charge.

This old banana tree

This old banana tree is a lot like me. It’s a bit withered on the ends and a little banged up. It’s seen many storms (some horrible) and kept living, struggling to get through another season. I’ve had it many years. I’ve seen it fall over, be replanted and come back like a champ.

I compared myself to that tree because as you all know I’ve done the MS dance for many, many years. It’s been an up down battle. Some seasons have been better then others, all the while I’ve pushed through and enjoy life to the fullest. Except when I’m grumpy, because as we all know I can be an ass at times.

I have noticed a change in my thought process in the past couple of years. I’ve noticed that these days I’m appreciative of the smallest of things.

Just showering, a trip to the grocery store (still hate Walmart) or getting a pedicure feel like a great accomplishment. It’s all about perspective.

I used to take those little things for granted until they became the things that wasn’t so easy any more. With that I’ll say every little daily occurrence is a big deal.

That dog that won’t stop barking, some day will and you’ll miss it incredibly. That baby that constantly needs to be with you, will grow and you’ll miss being needed. The hubby you argue with over not putting away his clothes may not be with you for life. It’s all of these little everyday occurrences that make great memories. My advice is not to let them go unnoticed. They’re important meaningful things that get overlooked time and time again.

Perspective definitely changes with age. I have to say my views on so many things over the years have changed and I’m thankful they have. After all we have to grow with life. If we stay stagnant and unwilling to move and learn from life, are we really even living? I think not.

So with all of that preachiness I’ll move on to say, I’m starting my newest adventure in my dance with MS. I’m starting Mavenclad. I’m VERY hopeful this helps. Not going in with unreal expectations, but with reading all the positive things that I have, I can’t help but be excited.

So yeah I’m like that old banana tree and going to keep on keepin’ on.

On this Sunday remember to kiss your spouse, hug your babies and give your pets extra treats. They’ve all earned it.

And as always, do something kind for someone It WILL make a difference.

Days of wonder

Waking up a day or two feeling somewhat decent these days are beyond over the top fantastic.

You’ve all been privy to the shit show that’s been going on with my MS. It’s been horrible, leaving me with a feeling somewhat of hopelessness.

Hard times suck! They suck royally. I’m not here to pretend or blow smoke up anyones ass. It’s hard and can be somewhat be depressing. Did I get kicked in the jaw? Yep folks I did. I was beat to hell mentally and physically.

I can’t say how many times over the past couple of weeks I thought oh my GOD how will my family go on without me being a busy body in their life? I also thought how much I didn’t want to be away from them.

We’re high spirited, argue and bicker kind of people, but we’re a tight bunch. We’re jerks, we’re us and we’re good with that. We make no apologies and offer no excuses. We’re us, plain and simple screw you type of people.

I had several issues with my breathing at night that alarmed me. I woke up gasping for air. This was brought on by my newest lesion placed oh so lovingly in my clavical spine. Yes I’m being facetious;)

My point is I’ve had a good day or two and yes life is still good! I’m still fabulous and still the HBIC😂

My thoughts are to please always hope and look forward to a better day. Hope is huge!

#onwardandupward #HBiC #Fabulous#Hope

The cold hard facts and keeping positive

Helloooooo Everybody:)

Old Al just popping in to give an update on things in my neck of the woods. I’m still chugging along and doing my thing. Enjoying life with the hubby, sons and my fur babies.

I attempted PT for a minute. Turned out it was more of a stressor on my body then one would have thought.

While I do recommend everyone do PT to keep mobile, I now see where I should have went at my own pace vs letting them push me past the limits I knew were too much.

I’m not blaming the physical therapists I worked with, I’m blaming myself. After all I am a grown ass woman and am in no way, shape or form afraid to speak up for myself.

The only thing I could say (in my defense) is that I was trying to push myself, in hopes to get back to prior progression status.

Was this stupid AF? Yes it was. I’ve always been a doer and truly believe my hard headed ways have kept me walking.

I went to PT for three sessions, every time leaving with a feeling that someone had whipped my ass. Silly enough as that sounds, I figured it would pass. It didn’t, I wound up calling my neurologist who was out on vacation. No worries there, they had someone covering his patients while he was off.

Fill in guy was very nice and knowledgeable of MS. I felt comfortable with him. He ordered a brain and cervicle spine MRI.

That came back with an enhanced, active lession on my cervical spine. This worried me greatly. I hadn’t had a an active lesion in quite a while. I have had flare ups over the years, but no active lesions in quite some time. I let fill in guy know that steroids didn’t work for me any more and I’ll probably need plasmapheresis. That was a Friday. My neurologist came back on Monday at which time I got in with him immediately. You know, to give my request of plasmapheresis. He wanted to try steroids first. He wasn’t quite sure where I’d get that done since our hospital was severely damaged in the storm almost 9 months ago. I figured ok, let’s see what he can drum up.

He said he would look into which places would be available. He did say, if you keep deteriorating go to the ER. That was actually the second time I had been to the ER. Fill in guy had me go and called ahead on Friday, at which time they told me the nephrologist wouldn’t be in all weekend.

No worries, no hurry, it’s not like I was bleeding out and in need of surgery. From what I’ve seen over the years with a chronic illness is, that there is no rush in regards to anything to do with said chronic illness. I’m quite used to this waiting game we play.

I was back in the ER, I wound up going in my pajamas and robe. This was very much NOT an Alex move. Truth be known I was just too tired and sick to bother with actual clothes.

By the time I got there I was so weak I could barely talk. My words were nothing more than a whisper. The ER Dr I had seen last time realized I was not doing well at all and got 1000 mg steroid drip immediately. Another neuro (mine doesn’t have privileges at the hospital) consulted and decided to keep me. With our hospital being in such a precarious state since the storm I was moved to another room in the ER. No worries I got this. The neurologist said he didn’t think plasmapheresis would help at all. WAIT ….WHAT?

I had plasmapheresis around a year and a half ago maybe two, why wouldn’t it work now? Mind you it didn’t make any earth shattering difference, but it did help somewhat.

What the ER neurologist left out was that it wasn’t proven to make a big difference with SPMS. Oh how I wish he’d have cleared that up, as I sat there thinking I was getting inadequate care, I got madder and madder over the next couple of days. ER neurologist also added Modafinil for energy. That is generic provigil. Which is a type of speed they give for severe fatigue.

So not only was I hopped up (to a certain degree) I was still falling alseep while sitting up. I was sleepy and VERY irritable. This is NOT a good go for someone with such a sassy mouth as mine. While I was respectful I made sure everyone within earshot knew I felt I was given inadequate care. I mean damn, had the ER neuro told me his rationale I would have known why he wasn’t ordering plasmapheresis.

Needless to say when my GP came to see me he saw devil Al. Not sure if I’ve ever touched on my relationship with my GP. He’s been my Dr for 18 years. I love him dearly, but never pull punches with him.

As he stood at the foot of my bed I let it all out. I let out about the inadequate care I was getting and asked WTF happened to the oath of DO NO HARM????? I told him I wanted out immediately!!! Needless to say he saw the level of distress I was in. He knew that if I was that upset I needed to be let go.

I was out of there in record time. Dr Nguyen to the rescue.

I went back to him yesterday for a follow up and was relieved to see he didn’t hold my shitty behavior against me. He suggested I go back to an MS specialist, stating that my MS has always been a difficult case. I’ve reacted poorly to most meds. With him saying that I took it seriously. My neurologist (while very MS savvy) is NOT a specialist who only studies MS. He also felt that going to a teaching hospital I would have access to the newest and most cutting edge treatment.

I took him seriously. He has been my GP since several years prior to DX. He’s seen the whole story play out right in front of him. His advice is very much appreciated and taken seriously.

On another topic (which is my original thought) I did some LIVE feeds and tried to stay active in my group. While I gave an adequate summation of events going on,I also tried not to bring my group members down. There is such a thing as TMI. After all I didn’t want newbies to be scared that this would be their fate. As we all know everyone’s MS is different. All the newbies need to keep pushing through and keep a positive mindset. I would not cast a dark cloud on their bright futures.

I also had a gem of an idea, it is to start a sharing program in my area. A sharing of assistive devices that are still in good condition. A lot of times people rehab and don’t need their assistive devices any more. While I was in the hospital my rolator came in the mail. My old walker Blue Bessie (which still worked) was heavy and cumbersome. I wound up putting her on FB marketplace for free. I didn’t need any money from it. I had already paid for the rolator, so why not donate it? Turned out A LOT of people in this area contacted me. It made me think of all the equipment from my late husband (Bob) that went to waste because it was left in my garage, only to be ruined and thrown away after the storm. Oh how I had wished i’d have put it to good use years ago. This thinking put the wheels in motion. Now to just make it happen, I’m hoping the general idea takes off.

So while this is a ton to shoulder at times. I’m still persevering and still positive that everything will happen the way it’s meant to be. Although I’d have given anything NOT to have to do that hospital stay, a great idea came from it. I still have my never ending faith that will see me through.

My positive message for this particular blog is, sometimes good things come from our darkest hour. That’s my positive pull🌺

Happy Friday folks

#onward#upward#doittoit#makeithappen

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