Positive thinking through MS

Screen Shot 2017-12-30 at 12.12.39 PMI start this by saying I truly believe positive things happen to positive people. Not to say when negative things happen it’s our fault. It’s life and shit happens.

I was heckled the other day because of my belief system. A woman in an MS group asked me if my beliefs have cured my MS. I answered no they had not. After reading this woman’s negative response, I thought long and hard about why she felt the need to be so negative. I mean I wasn’t telling her she HAD to have the same beliefs as me. I was merely stating what has gotten me through. Not to beat a dead horse, but it made me think about our way of looking at life and all of the ups and downs.

I’ve been known to say ” If it wasn’t for the valley’s I wouldn’t be able to enjoy the peaks.” I’m not saying I don’t have bad days, we all do. But to stay in that frame of mind is terrible for our health, it’s poison for the MSer. Did being in the valley’s of my life bring me pleasure?  No they didn’t.  Did I learn something while there?  Yes I did, with every bad experience/ hard time I took something and tried to make it a learning experience. Do I wish life was all rainbows and cotton candy? ABSO-FREAKEN-LUTELY. But its not, it’s our choice if we make life a negative experience or a positive experience.

There are times I could have laid in bed and cried for days. The majority of my family have passed, this greatly saddens me. But that is part of life and none of us are getting out alive. I’ll see them one day and that brings me comfort. I’ve been sick for many, many years.  I suffer pain daily, I can’t sleep most nights. I’ve lost my career and pretty much the ability to drive, I’ve lost my independence that I greatly valued. I make a conscious effort every day not to let those things get the better of me.

Can I be a grumpy Guss and get cranky?  Yes I’m actually known for my smart mouth and snarky comments. But when I look at my life I see the positives. I could still walk (numerous dr’s have told me i’d lose the ability).  I can still talk even when I have cog fog and get confused, I can form a sentence. I have abilities that some of us MSer’s don’t so for that I’m thankful. That’s why I see things in a positive light.

Now as you all know I’m not one of those hippie chics, not all flowery and crap. But I do what’s in my best interest and having faith and being as positive as I can, gets me through. What does negativity get you?

Think about that for a moment:

  • Does it  make you situation better=  NO
  • Does it help your health= NO
  • Does it bring you profit=  NO
  • Does it make people want to be around you= NO

While being positive doesn’t fix all of these situations, it does have some benefits to our health and mental wellbeing.

Don’t get me wrong, I know life is hard and I also know depression is a very REAL illness. I just look back at my very hard at times in life and know that if I didn’t look at things the way I do, I’d be in a lot worse shape with my MS. I laugh at everything I can, I laugh at myself a lot! I could cry about falling or my vision getting squirrely, or aspirating and choking on my food, but instead I make a joke out of it. It’s my coping technique and it’s worked so far.

Hopefully this doesn’t get anyones undies in a wad. I’m writing this in hopes to help any newbie MSer’s see they can take something positive out of all the experiences they may go through with this disease. Keep it as positive as you can for your own health if for anything. Cry if you need to (we all need to get it out every now and again) Your cup isn’t half empty, it’s half full!

 

Sleep Depravation and Cog Fog

 

Sleep deprivation makes for a cranky Al,

So last night was yet another up down experience.  Me with spasms and just a feeling of malaise. Then my hubby doing the up down to pee. I’m pretty sure I only got about 3 full hours of sleep.  So I will sleep walk through the day as I have done time and time again.  With lack of sleep comes Cog Fog.  This is where the MSer is so sleep deprived from pain etc. through the night that they have an extremely hard time thinking and has a  legit issue with cognitive function. This happens to me often.
My poor hubby has work. I feel worse for him than I do myself. I’ll be napping in a bit while he tirelessly teaches high school physics. Luckily he has good students that actually want to be in his class. But still teenagers are not my idea of good company.  I know I sound like a mean ogre.  I’m not, I just have little patience these days.  Sorry… not so sorry.

Teens today seem to lack respect as well as common sense. They lack respect because their parents left it for the schools to teach. Well guess what folks?  It’s not their job, it’s the parents job teach respect and discipline their child.   So if they don’t have respect you probably raised a jerk.  If you’ve raised some respectful children kudos to you mom or dad.  I’ll assure you, you’re the rarity.  But like I said Lance deals with some good kids that do not give too much guff.  So my sweet hubby starts his day and I start mine.
All my crazy pups are happy to see us both. We feed them, we we have to sit in their room while Daisy eats. With her cast on she has to wear the dreaded E-collar, which we take off while she eats and if left alone she will destroy her cast. Yep, she has us trained well.  Everyone eats and does their business but Miss Daisy Mae?  She has to be walked on a leash since she hit that car. Can’t trust her to act like a respectable lady dog.  She’ll go flying into the road hitting cars and what not.

While we’re sitting there patiently waiting for Miss Crazy to get done eating Lance reads the news. He brings an article to my attention, it’s about how to know if you’re in a successful marriage. We got 8 out of 10 on the list, he beams with pride as he tells me. This warmed my heart that he took the time to look at the article and be interested. He is a really good hubby, I love him dearly. Not to say we hadn’t had our rough patches, because we have, God knows we have. We have both forgiven our not so nice times and moved on. He has shown me over and over again that he’s going to be there for the long haul. Even with seeing the very ugly side of MS and has chosen to stay and love me through it. I appreciate him more than he knows.
Miss Crazy gets done eating, so Lance and I get together, I put on her homemade boot over her cast (so her cast doesn’t get dirty) and Lance puts on her pinch collar. She hates the pinch collar but it’s a necessary evil.  Even with a broken leg Miss Daisy Mae can still drag us around the yard. Yep she’s an ass at times, and a strong one at that! Lance and I joke about how we’re like a pit crew where that dog is concerned with all the preparation we have to put in.
Success!!!She shit like the lucky little princess she is. As we tell her what a good girl she is, she prances around, head held high and looking like royalty.  I love her, she’s a bigger diva than I could ever be.

So now I’m thinking how I’m in need of a good BM. This may be TMI but the past couple of days have been just little rocks. I drink a ton of water and eat fiber so that’s not a problem. I also take probiotics and Magnesium citrate pills to help with this issue. So now I wait…..
Luckily I have no plans today so I’ll try and catch up on some sleep. It’s been a weird week ever since my couple of appointments last week I’ve been a tad out of sorts and feeling my MS in full force.  Feeling like crap always makes me a little anxious. I get anxious because I’m not sure what’s heading down the pike. When I don’t feel well I worry this is going to be it…I’m going to wake up unable to walk. This is a common concern for us MSer’s.  Like I’ve said before MS is a tricky bitch.  It’s a valid fear, as I’ve seen time and time again. In my rational mind I know I’d get through it and make the most of whatever gets thrown my way.  I just really don’t feel like taking on a new normal.  This last new normal was a bit trying.
So the day goes on…..
Lance and I are back in bed talking before he goes to work. I hear the kitchen door open, who could it be this early in the A.M?  It’s baby Jake!  He came over to see me before heading out of town. No he’s not going out of the country this time. He’s just going to Georgia for a little get together for a friends bday.  I got to say it pleases me he feels the need to come and see me before heading out. It makes my heart happy.
He’s a happy go lucky ball of energy.  He comes in and the house is buzzing with laughter and silliness. He really is a live wire. My eldest David is my reserved, tender hearted, no nonsense, go to son and Jake is the wild child, have a good time and full of laughs. They definitely keep me entertained. David acts like me and Jake is just like their dad Big Dave.

He’s a character to say the least. A good dad with a heart of gold. Most people don’t care for their ex’s, thats not the case here. God knows we’ve argued over the years but I still hold him in high regard. He still has my back when it comes to the boys.

Last year Jake was going to NY for a visit with a young lady friend of his. He didn’t want to stay at his dads while he was there since he was going with a friend. He wanted to stay at a hostel. Well this particular hostel was in East NY. East NY is a very rough area, filled with crime and drugs. I told Jake this wasn’t a good idea. He blew me off. So I talked to Big Dave about it. Needless to say he convinced Jake not to stay there and to stay with him and Elaine. Thank GOD! I’m sure Jake could take care of himself, but I didn’t want him bringing this young lady to this area and God forbid having an issue.

Well enough of that bit of history, I may be rambling. It happens when I’m tired. I went back to sleep for a minute and Mr. Wiggles (my Olde English Bull) was in my room snoring like no ones business making it impossible to sleep. I thought to myself, that’s it I’m putting all of them down tomorrow! I sometimes tell them that just to make sure they know they’re walking a fine line. Don’t worry folks, I’m only joking, I just say it more for entertainment purposes.  So I’m regretfully awake but I guess I shouldn’t complain it’s better than the alternative.

BTW BM Accomplished today WILL be a good day!

So lets get this party started folks! Happy Thursday, lets make it a great day!

Blogging and being heckled?????

Well as you all know I wrote my blog this morning from bed. Feeling crappy as all get out, I decided to go back to sleep. I woke up and looked at my FB page MS with Ms. Alex.  I had also posted my blog on some of my MS support groups. I’ve had a rather positive response in the different groups. After all who doesn’t like reading positive/funny things when things look bleak?

Well low and behold I had someone respond to my blog with “Really? has faith cured your MS?” I responded with “nope, it hasn’t at all. But then I never claimed it did.” I went on to say this was my way of coping with MS. Had this woman read my blog in it’s entirety she would have seen where I was going with it, But no she spouted off making herself look silly.

My question is why would someone heckle another persons coping technique or belief system?  I at no time said this is what you HAVE to do to get through MS. If anything I’ve always been the no politics, no religion kind of gal. I respect everyones religion and beliefs. I was merely stating what Ive done to get through MY rough times with MS. On the other side of that coin, I also would never dare to heckle someone else’s way of doing or their beliefs. It’s rude and disrespectful. This woman was not legit asking me if I had been cured. She was being snarky, it was NOT appreciated.

NOT cool, I stay in my lane and expect everyone else to stay in theirs. If someone doesn’t like something written then you can click and get out of the blog and keep it moving. While it really chapped my ass, I held off and refrained from getting down to her level. If anything that would make me look as ignorant as she appeared. So with that being said, I hope I didn’t offend anyone. I am in no way shape or form apologizing for my beliefs. They are after all MY beliefs and I stick to them. I do want to say if there is anything anyone doesn’t agree with feel free to unfollow.

I love my blog as it is therapeutic and brings me a lot of laughs. It also as I’ve said before is a diary of sorts. So I’m keeping my diary and thats that. I do have to give my friend Lesley props for coming to my defense with that woman. I appreciated her words more than I can say.

Now on to other silly business, I got up after going back to sleep was able to shower, and my son took me for ice cream. I was kind of in a funk and I suppose he picked up on it. We went to my fave ice cream joint Cold Stone Creamery. YUM!!!!! Its one of my guilty pleasures. I was telling my girlfriend that he took me and told her “my, my how the roles have changed It was like he was the parent and I was the kid”. It made me chuckle. I’m lucky to have those boys and my sweet hubby.

Speaking of my hubby, he was at work the other day and called me asking me who Ashley was at the dentist office? I told him I think she was the hygienist. A nice girl who did a bang up job on my cleaning. He goes on to say she called him while he was at work looking for me.He said he was very terse with her.  I told him I was’t sure why she would call him since I only left his number as my emergency contact.  So I called and asked the receptionist if everything was ok?  She said yes and Ashley was with a patient, but she’d check. She comes back to the phone and says ” she was calling to let you know the new Oral B toothbrushes are in. I said really? she thought that was emergency enough to call my emergency contact to tell me that?  Don’t get me wrong I’ve done sales, I get it, but there are certain things you just don’t do. I told the receptionist to “please let Ashley know the only time she needs to call my emergency contact is if I’m dead in their chair”. She chuckled and agreed and said she would talk to her about it.

So now that I’ve cleared up the whole religion debaclePhoto on 1-10-18 at 3.28 PM, I hope you all continue to enjoy my blog as much as I enjoy writing it. Still smiling my cheesy smile. Good bad or otherwise I still feel every day is a gift.

Faith and feelings of self worth

IMG_5418First let me say my faith has gotten me through, time and time again. At my hardest times my faith in God gave me something to believe in, something other than myself. It was good to give my hard times to God so I didn’t have to shoulder them alone.
I know… I know, you’re all probably thinking Alex come on, we all know you curse like a sailor. This is true. I’ve been known to drink too much (I don’t drink any more) curse, tell someone off in a hurry as well as go toe to toe on occasion.
I’m not trying to paint some picture making myself out to be some holy roller. Because I’m not. I’m full of piss and vinegar and don’t pretend otherwise. I’m human after all. But I do have faith. I have a strong faith because of my step mother (she introduced me to religion at an early age). She (my mom) is the most Christian woman I have ever known. She talks the talk and walks the walk. I can’t thank her enough for instilling this in me. Any time I’m having a hard time, I give her a call. It’s like going to church via the telephone.
My religious back ground has given me the foundation that has gotten me through all of the trials I’ve had to go through in life. Although in my teen years you never would have known I knew anything about religion, I was a live wire and a handful for sure.
I remember when I first started going back to church here in Florida. I went with my Sissy. Little did I know I’d need that religion in months to come.
I started getting really sick. It all started with a tetanus shot ( yep a tetanus shot) I had to get because I cut myself on my fence at the house. I’ve heard others blame tetanus for their MS as well.  In my very uneducated opinion I think MS lies dormant in our system and is brought to the surface with different things. In my case it was tetanus. No I’m not saying don’t get a tetanus shot if you need one.
I went to my GP got my shot and not 3 days later I had flu like symptoms. Went to the hospital where they diagnosed me with some type of viral bug. Then the storm came, Hurricane Ivan in all his glory. At that point I was so sick I was almost bedridden. I stayed sick for about a week after, but slowly got better. Then came the numbness that started in my right hand ( still numb to this day) and kept spreading throughout my body. At first I just thought maybe a pinched nerve in my arm from my very heavy purse. Long story short this continued to spread. I developed a rash on the base of my scalp and my balance was off.  My GP sent me to a neurologist That neurologist said I had a basal migraine. I knew did not have a migraine. I’ve had them in the past and knew this was NOT the case.

After a couple of months dealing with that jack wagon. I decided to get a second opinion. At this point my whole right side was dead and I was pretty much dragging my right foot and my toes had curled upward.  The new neuro did a quick neurological exam, looked at my toes and said I’m not 100% sure until I do some tests but it looks like you may have Multiple Sclerosis. I’m thinking WTH? All I could think of was Jerry’s kids as I had no idea what MS was. I had the necessary spinal tap and MRI both test confirmed his suspicion of MS. I was floored! I told my girlfriend Patti of this (her hubby was a Radiologist). Butch was kind enough to look at my films and confirmed the diagnosis. That really meant a lot to me. They’re really good people.
So it went on and on, the one thing that got me through was my faith.  Faith, Bob ( he was my rock)and my family.  My sissy came over every day to help me around the house and pick up the boys from school. She damn sure looked out when I needed her.

I kept going to church and when things got too difficult I prayed and then I prayed some more. Getting back to church at that precise moment saved me from absolute despair.
That same faith got me through the passing of Bob. His passing broke my heart but I got through it.
Now I’ll talk about feelings of self worth.  From what I’ve heard it’s hard for some to have self worth when dealing with a chronic illness.  My self worth comes from in part my religion. I know if there wasn’t a reason for me to be here, I wouldn’t be. I still have work to do. Not sure if it’s for my kids or my hubby or for whoever is reading my silly blog. But I do know there’s a reason, and I do have purpose. When my job is done, I’ll be gone. That alone gives me a reason to have a ton of self worth and brings me great comfort.
I remember when my husband Bob was sick with cancer he would tell me over and over. I just have to get these boys grown. When he passed I knew (even though I was heart broken and shaken to my core) that his job raising the boys was done. He was a wonderful father, raised his three kids and then my two.  He did a wonderful job and I’m forever grateful.

So yes we have tremendous suffering with this disease, but there is a reason we’re here. We have purpose, maybe just to show someone else how lucky they are not to be sick. You still have purpose and should always have self worth. We bring something to the table. Don’t ever let anyone make you believe otherwise.
No I’m not telling anyone that this is what they HAVE to do. I’m just talking about my personal path in dealing with a chronic illness.  I know it can be quite a blow when we can’t work or do the things we’ve always been able to do. I don’t judge, and I don’t shove my religion down anyone else’s throat.  I just want people to understand what’s brought me to have the attitude I have. Time and time again I see my fellow MSer’s questioning their self worth and my heart goes out to them.
With all that being said I’ll let you all in on the real scoop. I’m doing my blog from bed today because I feel like dog doo. But that’s ok. I have faith that tomorrow is another day and filled with endless possibilities.

This blog entry is dedicated to my Mom Libe. If it wasn’t for her I wouldn’t be who I am. Thanks for reading and Happy Wednesday folks.

Sent from my iPhone

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😉