Sweet Memories…

So today folks I’m going to talk about cognitive issues. Cognitive issues suck, because while we look like we’re perfectly fine, our brain tells another story. Hence the term invisible illness.  One of my many reasons for doing this blog was to hold on to memories. I always took it for granted because I’ve always had a hell of a memory.
Well with this last flare It’s given me some really serious cognitive issues with memory etc. it’s gotten to the point that I have to either put it in my phone or tell Lance when I take meds as to not take too much. I’ve also pretty much stopped driving because of memory issues. Well that and the crazy leg that at times wants to dance around vs press the gas peddle. So the tricky bitch plays jokes with my memory too.

For instance Lance and I went to my fave BBQ joint a couple of months ago.  Any locals reading this will know which one I mean because they’re the only ones with chicken sauce. I love that stuff, if I could figure out how to make it I’d put it on everything!  So we get there, take a seat, the waitress comes up to us. She has a big smile beaming at me and say’s ” Hey Alex how ya been, I hadn’t seen you in forever?”  At this point I’m like what the hell?  Where do I know this lady from? I could tell she saw the look of confusion on my face. I tried to play it off, but I could tell she wasn’t buying it. I felt terrible, I wasn’t sure if I should ask how her family was or any of the normal questions you ask someone that you know.

I have prided myself on having a good memory. I remember when I was selling cars, I always remembered my customers, their cars as well as their family. When doing police dispatch I always remembered the problem people, what their issues were and if they was known to be violent etc. Now I couldn’t even remember this lady. Someone I clearly knew. It was unnerving to say the least and a bit scary.

This would be my main reason for not returning to work. Between that and all of the other issues, I wouldn’t feel safe doing telecommunications at this point. A dispatchers main duty is to be able to send help quickly and keep officers and firefighters safe. I couldn’t risk sending someone to a call and them getting hurt because I forgot something crucial to the call. I couldn’t risk having an emergency and forgetting procedure. You all see those dispatchers on the news. Getting raked over the coals for doing something wrong and someone getting hurt. That was not going to be me! I couldn’t live with myself knowing I caused someone to be hurt.

I know most of you reading this are saying, it’s just a brain fart Alex. Well it’s not. While we all forget things from time to time this was different. I could tell that day at the BBQ joint something was terribly amiss. I didn’t say anything to the hubby. I knew he would say the same thing, that it happens to everybody. So I kept it to myself and took the wait and see approach. Well the wait and see proved me right, my memory card was completely full. I need to back up my system.

For the most part some of my long term is still in tact, I still remember my kids births, the death of my Da and the death of my husband Bob with such clarity it still brings tears to my eyes. My short term memory is absolutely worthless. I can watch a movie with Lance and forget we ever saw it. I can take meds and forget that too, That gets a little tricky as I do not want to God forbid O.D one day.

I know this is very frustrating to my family, they tell me things and I completely forget. These days when they tell me something I just say… remind me of this conversation later because you know I’ll forget. It’s ok though I did my time as the keeper of all the important things to remind my family of in the past. Now they can remind me. I still have some pretty awesome memories and some really funny ones that I think about to give myself a chuckle. On the flip side of that, if I do forget something please don’t think ill of me. It’s not due to lack of caring, my memory card is filled to capacity.

So with all of that being out there in the wind, I’ll say this blog is a diary of sorts. I want to be able t read this in years to come and say WOW that was a great day or damn I got through all if that?

So yesterday was a decent day in regards to pain. It wasn’t great but it wasn’t horrible either.  It’s a smidge warmer so I can move without looking like my joints need to be lubed. I went tanning with my sonny boy and actually went to the store with the hubby. It was just the dreaded Walmart, but I went. I hadn’t been out of the house at all for two full days. While Walmart isn’t the best place to go, it’s if anything a place to go for entertainment.

Later in the day one of my duckies really pissed me off. I won’t name which one was the perp but lets just say he isn’t that grown and I’m not that feeble. He asked me for something, I went out of my way to look for it for him and he had the audacity to get snotty with me. I may be a tiny little lady but anyone that knows how Hispanic mommas are knows that we’ll flip the bitch switch in a hurry. I don’t deal well with snotty young people, I don’t take it from mine or anyone else’s.  Respect is HUGE in my eyes and I’ll be damned if I have some drippy nosed kid getting sassy with me.

My sweet little Duckie flipped my switch. I got very ugly really fast. His response was I’m sorry mom I was kidding. Well that sense of humor doesn’t fly with me as he soon found out. We’re not on the same playing field. I’m the mom and he’s the child. I let him know this and that no matter how old he is not to think I’ll be joked with like that. I am after all the matriarch of my little family.

Kids today or I should say young people (as he is well over 18) have lost that fine line somewhere.  They seem to think that because they are legally grown that they can say whatever and it should be accepted. This is not the case! I let him know that this way of thinking could get his ass kicked in a hurry.  I let him know that his father would have flipped his shit too given the same snotty response. I know I dared not talk to my father snotty because he would have cleaned my clock. But then I grew up in a different time. Even though my sonny boy is approx 6ft 2 and about 200 lbs I’m still the HBIC!

My question is… when did we lose this way of thinking? Mind you he didn’t say anything terrible, it was more of a sassy response. Why did this piss me off so bad? I think it stems from my upbringing. My dad was 50 when I was born so needless to say I was raised very old school. At no time did I think my dad and I was on the same playing field. He was Da and knew all things. It was good, the line in the sand was drawn and I did not cross it. He apologized and we made up. I’m regretful for turning into a screaming loon but sometimes thats what it takes to be heard. After all I wouldn’t be Alex if I didn’t flip my bitch switch from time to time.

With my hand starting to have tremors I’ll end this entry with, today is a good day filled with endless possibilities. Lets make it a good one. Happy Tuesdays folks400342_3916610629275_1146668083_n

Keeping up with the Jones’s

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I Start this entry with the title Keeping Up With The Jones’s. It’s going to touch on some things most people don’t feel comfortable with. I was guilty of this too. With social media being what it is, we as a society have to always be on. We always have to be pretty and post plenty of pictures to show everyone how perfect things are in our lives.  We don’t want to show the struggle (and what a struggle it is to appear fine when your sick AF).

I was guilty of this as well, I didn’t want people to see my daily fight against this hideous disease. I didn’t want people to see me without my make up or looking like hell. My kids humored me retaking pictures, because everyone wants too make momma happy.

I have to say my son Jake has taught me lessons in regards to peoples perception. Jake has a very carefree attitude. That young man could care less what people think. He’s Jake and that’s all he’s trying to be. I remember when he was younger and he’d put on something I didn’t care for I’d be like “Jake what are ya going for there, the homeless look?” He’d just say “I don’t care mom, I’m going to wear what I want”. I didn’t get it at all.

But now since I’ve opened up myself to this blog, I’m going to let you all in on a little secret. One of the reasons I sit in most pictures is because I look better and not so crippled sitting vs leaning on my cane. Yep I’ve mastered lying to the camera. I also make sure my wonk eye is usually semi covered by my hair so you all can’t see that my face never fully recovered from a bout of Bells Palsy. Some day’s it’s more prominent than others.

I admit I really had a hard time letting people see the REAL me. The sick and at times broken person I can be after dealing with MS for almost 14 yrs. I did this because this is what society expects. We all ask people when we see them ” hey, how are you, how ya been?” my question is do we really want to know how someone is doing? Or do we expect a big old smile with an answer of I’m great!

I remember when Jan (my bestie) and I was working police dispatch we’d answer the phone and people would ask “hi, how are you?”.  After I’d get off the phone I’d say to Jan ” I don’t know why these folks ask that, I wonder what they would say if I told them well I feel like crap,  but how can I help you today?” Did they really want to know?  No they didn’t, we’re raised to think that’s having good manners. Don’t get me wrong it is the polite thing to say. I’m not by any means telling folks to be rude. I just know when asked how I’m doing I alway’s use my canned response “hanging in there like a hair in a biscuit” or “I’m doing pretty good” followed with a big cheesy smile. I don’t dare tell people I hadn’t shit in a week and I feel 12 months preggers, or my vision is off today or  I’m having to strain to see. Do they really want to know I went through the day with foot drop and I am stumbling through my day?

With an invisible illness it’s hard not to keep up with the Jones’s. We don’t want to appear as whiners or complainers. We want to play the same game everyone else plays on social media. We want to be “normal”.

I remember back in February, when I had my last flare that left me so sick I couldn’t work. I posted some status updates regarding my failing health. Well let me tell ya, I had people (very dear friends and family) message and call me inquiring what was wrong. My response was ” Ive been sick for almost 14 yrs with this fucked up disease and I’m getting worse.” It wasn’t their fault, they didn’t realize that I had struggled every single day. After all I was keeping up with the Jones’s and pretending all over social media that everything was fine. Don’t get me wrong I do ROCK this shit disease, but I do admit now after all this time, it’s a struggle every single day.

I also have to say I’m as guilty of the same. I was talking to a very dear friend of mine that has dealt with some really trying health issues over the years. He told me he’s been fighting these issues for the past 14 years as well. This was surprising to me as I had no idea it had been this long. He like myself handles his issues really well and does not complain. I just assumed he was doing well because he’s like me a very positive person.

I think we all expect the canned “I’m doing fine” because discussing being sick is uncomfortable for the sick person as well as the person asking. It could get awkward in a hurry, the only response you can say is I’m sorry. Well let me tell you saying I’m sorry can be enough. Empathy goes a long way. Just an FYI I’m not concerned with keeping up with the Jones’s any more. Those bastards aren’t paying my bills.  With this being said from now on when asked how I’m doing, I’ll say I’m having a good day or I’m having a bad day and leave it at that. No more BS from this girl, it is what it is and all that jazz.

I do have to say being true to myself and being real is liberating. Baby Jake was on to something. Smart young man if I do say so myself. So just a heads up me and my family are far from perfect, we argue (loudly).  We are that crazy family at the end of the block. We as a family have good day’s as well as bad day’s and thats ok. I wouldn’t trade them for anything in the world. I had a friend tell me not long ago that I was lucky for having the support system I have, and that I’m truly grateful. I will say, I keep things positive because I still believe positive things happen to positive people. There are so many that suffer much worse than me.unnamed-2

Recharging and shit😜

So today started with much of the same. Waking with the hubby and I tending our crazy pups. If I can say anything, the pups give me a reason to get motivated these days.

Fatigue for us MSer’s is mind numbing and can make us just want to lay in bed. People tend to think it’s not a real thing because we “look so good”. Just an FYI I put a lot into this “looking good shit”. So my pups give me constant companionship and force me to get up.

I remember this time last year I was able to maintain a full time job, entertain the hubby, tend my home and my pups. Now things are very different.

Having two busy days this week whipped my ass. Where I used to be able to run here, there and everywhere, clean, cook and bust a move. I now find myself having to recharge my batteries after a handful of dr visits.

Where I used to be able to booty dance like no-ones business (my son taught me all the newest dances) I find myself stiff and having to really think to make my body move. I still get around ok, but there’s a lot of thought that goes into every step.

It’s ok though because I’m still a fucking rockstar in my head. I suppose it’s ok though if MS didn’t catch up to me age would have. So yeah this weekend was a wash but I’m sure tomorrow I’ll be full of piss and vinegar like I usually am. Look out world. I’m still an asshole, just currently a tired one.

Looking forward to an uneventful week. Next week Crazy Daisy will be out of her cast. I’m sure she’ll be raising hell again (just like me) I can’t wait!!! Hopefully she calms down and turns out to be the gem of a service dog I think she can.

So with that I end this entry with hoping you all have an awesome week. Appreciate everything in your day because it could change at any moment. Let’s keep it positive folks. Positive things happen to positive people and all that jazz😉

Blogging and personal info

So yesterday was a wash. The pain subsided, I took a shower and ran out of spoons, I only have so many after all. (Google the spoon theory if you don’t understand that term). Showered and petered out quickly. I was out of breath, dizzy and weak.

I didn’t have the strength to go to the store with my DH. It’s ok he’s a good egg and didn’t mind going alone. So the day was a loss. I did nothing. Not out of laziness but because of pure fatigue and vertigo.

I wrote another blog about cheating on a spouse that suffers with a chronic illness. I ask my hubby to read it. I ask what he thought he say’s “it’s good. I just think you put a lot of personal information in your blogs”.

Then he say’s “ this last blog may lead people to think I’m cheating on you”. I laughed and said “honey anyone that knows me, knows if that was about us you’d be dead and I’d be in jail and unable to write my blog.” I went on to say “ this is a serious thing that people with chronic illness worry about and actually go through”.

The whole reason for this blog is to touch on the things a lot of people go through and no one talks about. I’ve long stopped worrying about popular opinion. I’m willing to say what everyone else is thinking, but afraid to say. I put a lot of personal info as well as concerns we MSer’s worry about into this blog, I do this so other MSer’s realize they’re not alone in what they go through.

Today’s another day and is starting out much better. I’m thankful, I took the time yesterday to recharge and it helped. Life is good even with a chronic illness. Happy Sunday folks hope you enjoyed today’s entry. Feel free to share any of my blogs.

Lovers….

As my day progressed my pain lessened. Took all my meds as well as my cbd oil etc. So the hubby and I chill on the couch. Snuggled up like bugs in a rug. We’re going to watch Netflix and chill. Young people use this term as a slang term for sex. Lance and I literally watch Netflix and chill out.

We decide on a movie. The name of the movie we pick is Lovers with Debra Winger and some guy I don’t recognize. It’s a cautionary tale of two older people that are stepping out on their spouse (hence the title Lovers).

This brings me to a question. Should us MSers expect this kind of thing? I mean it is hard having a spouse with limitations, but marriage should be until death do you part. Not well my partner is sick so I’m going to find someone else. I see it all the time in the groups I’m in. It breaks my heart every time.

I can understand people growing apart, but just totally giving up on your spouse because they’re sick? In my opinion thats unacceptable. I truly don’t know how someone can deal with that without becoming violent. I promise there would be an ass kickin’ a coming (said in my best Southern accent). I may be a Northerner but I can do a hell of a good Southern accent, as well as whip an ass like there’s no tomorrow.

I think about my own circumstances. No Lance didn’t sign up for this, but I’m all about full disclosure and I made him very aware of how things can go. The only thing I do know is this is a scary topic for people with a chronic illness. But it does happen A LOT.

Us MSers have a lot to think about. Our failing health as well as being a burden on our loved ones and them becoming disinterested. I hope my hubby never feels the need to, but if he ever does it would be his loss. I may be sick but I’m still quite a catch and do bring a lot to the table.

To my friends that follow this no, I don’t think Lance is stepping out. This is just a trend I see on the MS groups I follow. So let all of us follow the thinking that our worth isn’t effected due to our illness. We’re strong mentally if not physically and we DO bring something to the table besides illness.

I finish this blog post with saying whatever we do let’s not let our illness over shadow our self worth

Happy Endings

Well last night ended with spasms upon spasms, as well as nerve pain. Remember it’s cold and I have cold intolerance. The past few days have been pretty busy (which is not my normal). Folks don’t really understand that any upset of my apple cart comes with consequences. Well last night was a doozy.  I went to bed around 10 pm. Pretty average time to go to bed right? Well that didn’t last long, I was up at 11:30 then 2:30 then again at 5:00 am.  At that point I say fuck it. I’m up the nerve pain and spasms got the better of me last night. That tricky bitch (MS) was at it again.  My legs were on fire.

So my day starts, I get up hating life at this point because I’m exhausted. I think to myself, someone might get an ass chewing today.  I try to play it cool when my hubby talks to me. After all who wants to wake up to an irritable bitch. Picture it, I have my crazy side ponytail going on, my big fluffy robe and my signature cheetah slippers. I can be found wearing these any time I’m home.

So off to the dogs bedroom, because yes they have their own bedroom. Everyone is happy to see momma.  It’s great, it doesn’t matter how much I’m suffering with IBS (Irritable Bitch Syndrome) they’re always happy to see me. I get to filling food bowls. Hamm first, he’s my fat ass and always starving. Hamm is getting old so I humor him and feed him first. Then wiggles (who is also a senior dog) he can be found facing the wall wagging his stump because he’s going blind. This always gives me a chuckle. Then crazy Daisy and Sampson. Everyone’s fed and the DH walks them. He’s a saint on days like today.

I’m trying to hide my IBS but am answering his questions a little short because I’m cranky AF! He see’s through my facade and asks why are you being so terse?  Meanwhile in my head I’m pretending rather well not to be an asshole. The jig is up, my IBS is clearly visible. I try to change my piss poor attitude but it’s kind of hard when you’re working on not so much sleep.

A lot of us MSer’s suffer with severe fatigue, some of it being caused by lack of sleep due to pain throughout the night.  So I think to myself this day will turn around. Always the optimist, I head to the bathroom to attempt a BM(bowel movement) after all yesterday I went to the bathroom fine, no laxatives or anything. You’d have never known I had an issue in that area. But today was NO happy ending for this girl. As I’m sitting there on the can waiting, I thought about the Seinfeld episode with the soup Nazi, I thought about him screaming NO POOP FOR YOU vs. NO SOUP FOR YOU!!!!

Yeah these are some of the things that run through my head. It’s ok though it keeps me chuckling. So today is starting as  a no poop for you kind of day for me, but it’s bound to get better. I hope…….

Love my duckies

Well my youngest Jake came over last night as well as this morning. He was sick as crap.

So I insist he go to the dr. My GP is out of town til Monday. So off to the walk in clinic we go.

We get here and I tell them he either has the flu or bronchitis and needs to be seen. If you’ve ever been to a walk in clinic you know they’re not the most pleasant folks.

They called Jake to the reception window, he goes where he’s called, the receptionist asks him for his ins card. He says I just emailed it like the other clerk told him to do (his ins is under his dad with the plumbers union in NY). She gets a tone in her voice and says she wasn’t told he had emailed it. Well Let me tell ya, I’m not going to have some jerk getting nasty with my sick son. I spring to my feet ( as best I could) and lean into the window and say in a very nasty tone ” we emailed it” lips tight and almost daring her to get that tone with me. I’m not above pulling her through the window and jerking a knot in her ass. She smiles sweetly and says ok.

Dr comes in, checks Jake says it sounds like it’s probably bacterial. He’s going to prescribe a Z pack and cough meds. I say how about a shot of antibiotics ( to get it in his system quicker) and an inhaler since he is asthmatic and was wheezing yesterday. We agreed on the course of treatment. The dr was very nice and accommodating, unlike the chick in the front.

I do admit I’m scared to death I’m going to catch his funk. But once a mommy always a mommy and I’m willing to take the hit to make sure my sonny boy is taken care of. These boys keep me hoppin.