Following fashion rules and feeling good about yourself

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I awoke this morning with a haze in my head and noodles for legs. Did I do anything to earn that feeling? Did I over do it yesterday? Absolutely not, the biggest thing I did was decide to start talking about fashion in this blog.

Sometimes MS can just be that way, some days we are semi human, moving about like everyone else. Other days we’re spent before our feet even touch the floor.

Today is one of those days. Today I didn’t tend my pups, but instead laid in bed. Lance took care of them. He’s a good man, picking up the slack when I’m a spent beotch.

Afterward we laid in bed drinking coffee and reading the headlines. Eventually Lance decided to do more trim work on the house and I attempted to get up and get moving.

At around 9:00 am I called my eldest. Today is our every two week pedicure date. I LIVE for this little luxury he treats me to. I mention to him that I’m going with white on my toes. He says NOOOO it’s fall. I tell my boy I am absolutely doing white.

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While I do follow some fashion rules, like dress your age , and never wear something you’ve worn as a teen after turning 30. I don’t follow the whole not wearing white in the winter months rule. I’ve always thought that was silly to limit yourself because of the time of year.

Another rule I find to be silly is the sequins only at night. I love throwing bling into an outfit regardless of what time it is. Some rules were just made to be broken. So by golly, I’m going to break them.

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My thinking is if I like it, it makes me feel good, and I’m comfortable with it, then damn it, I’m going to do it!

Comfort is always a big consideration for me. Take today for instance. I have a chill about me. While it’s well into the 80’s, I have goose bumps and shiver every now and again. My plan for an outfit today included Bermuda shorts, white sleeveless t-shirt with a long sleeve denim shirt on top and white flip flops to show off my pedicure.

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The layers of this outfit will allow for the changes my body will go through during the course of the day. The denim shirt will keep me warm enough and the sleeveless shirt for when I get too warm. After all it is 87 degrees outside and I don’t want to get over heated, which adds to fatigue.

My big tip for this entry is if you suffer with heat/cold intolerance, be prepared. For some reason dr’s tend to concentrate on heat intolerance, even though there are a bunch of us that suffer with cold intolerance as well. Those with body temp issues have to think ahead. My other tip would be wear what makes you feel good. But always…I beg of you always make sure clothes are age appropriate. You don’t have to show off your goodies to still be seen as attractive the older you get.

Now that I’m home and in my comfy attire, I’m going to perch on my couch like I do when having a day like today.

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Wishing you all a fantastic weekend!

Self perception, disability and fashion

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I’ve talked about Chronic illness in my blog quite a bit. Ive talked about the fatigue, the blurred vision, the drop foot as well as constipation I’ve dealt with while having Multiple Sclerosis. I’ve talked about my progression in going from RRMS to SPMS. I have touched gently on the blow to self esteem some suffer with when dealing with this hideous disease.

While I’ve shared some very personal experiences that I have gone through, I don”t think I really delved into how much of a mind f*ck it can be. In all honesty it can be quite the roller coaster ride if you let it get the best of you.

I’m not going to sit here and tell you guys that I haven’t cried my eyes out on occasion as my disease has progressed, because I have more than once. I admit my own perception of myself has been negative at times. Not being able to go and do as you once did can be crushing. Having people stare at your cane or when you have to use a scooter to get around the grocery store can really deplete your sense of self worth. Not to mention the countless times I’ve shuffled around the house wearing my cheetah slippers and bathrobe with my hair pulled up in the crazy side ponytail.

After all there are times my skin feels like it’s on fire from nerve pain which makes the thought of putting on clothes a no go. I have nerve pain that touches the soul at times, but even on those days, I’ve beat myself up over not looking my best.

I’m reminded of something my youngest has told me over and over again when I’ve shared something negative. He’s said “Mom don’t even put that in the air”. I have to say when he’s told me that it’s always put things in perspective. In other words don’t give that negativity power.

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This gives me pause for thought, why do we hold ourselves to such self deprecation? We should never be our own worst critic, but instead we should build ourselves up.

In my group I always tell my members I’m their cheerleader. If anything, I want them to know that when they don’t have the strength to cheer themselves on, I’ll do it for them. We all have insecurities, especially when dealing with a debilitating disease; but we’re all rockstars in our own way. I’ve heard MS referred to as the snow flake disease, because everyones disease is different. While I can still walk with the use of a cane, I know that some can’t. On the same note, while I need a cane or have had to use a walker in the past, some have never had to experience that.

I remember when first having to use a cane some 12 or so years ago, I made it my mission to have a fabulous selection of canes to choose from. The first one I got was from a medical supply company. Needless to say it was less than fashionable. It was adjustable and just plain ugly. I remember thinking well this isn’t very vogue. I was embarrassed to use it. Since then I started ordering my canes on line. I have a bunch of them now, including one that’s a sword cane. It was given to me by a dear friend who was the assistant chief at the police department I dispatched for. It’s one of my favy canes, but I really don’t use it because the weight of the sword inside is enough to throw my already bad balance off kilter. I have to say being a crip isn’t the best situation, but if I have to I’ll be a fabulous crip.

My point to this is we’re all beautiful and all have a gift to give others, if anything just with our presence. I read in a meme once that said ” I’m not chronically ill, I’m chronically fabulous” We should all have that mind set, because we are ALL chronically fabulous. If anything, chronic illness mixed with disability is not for the faint of heart.

Mixing things up with fashion and MS

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While dealing with the whole MS bullshit, MRI’s, fatigue, pain yada yada, boo-boo. I’ve been mulling over different activities that can keep my brain functioning at a semi-cognizant level. While I’ve always been a quick thinker and even considered a mover and shaker on occasion, I know that now I’m at a slower pace. This stresses me out!!!!

Everyone that knows me knows that I will not take that lying down. I blog regarding my ups and downs with MS, I have my MS group where we have light humor as well as informative posts . I feel there’s more I could be doing with my free time. More to keep my brain working at an acceptable level.Mixing things up   Sofaking sick and tired of MS

While talking to my eldest, he suggested blogging about fashion. Him and my youngest have always thought I was a sharp dresser. Little do they know, I pretty much follow older classic looks; looks from the 50’s and 60’s where women looked put together. I’m not going to say I don’t lounge out on occasion, but for the most part I really do like following fashion. I like it, but never go full throttle into a trend. I’ve always put my own spin on a look so that it would suit me best.

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So in addition to blogging about MS and the freak show it can be, more times than not, I am going to blog about different fashion trends and products I’ve found to be useful. I think it may be a fun time for me. We’ll see, it will be something different to mix up the daily doldrums of retirement.

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Ive taken to doing more Instagram and following some that I feel are fashion forward. Feel free to follow me on Instagram at: mswithmissalex

 

I’ve found this little gem that I’m going to pass on to you. Its a great little app that I really like. It helps you find what stores certain pieces are available.
With all of that being said, my must-haves would be mules. They are super cute, comfy and stylish. Although I miss my heels horribly, I can still be stylish shuffling along.

Wishing you all a fantastic Thursday. As always I’ll end this with; do something nice for someone, it could make a difference in their world.

Along for the ride.

This morning for once our sweet pups let Lance and I sleep in. Woot woot! I can’t really complain though because these days my hubby tends the dogs in the morning. I still wake up from hearing them bustling about. Daisy always runs in and licks my face as soon as she can get in the bedroom.

That is my girl for sure. She’s a hell of a service dog and is really coming around. I’m very proud of her. She is so in tune with me and I love it. If I’m having a bad day she is all over me like a worried momma. I love all my pups but she really is special.

It being Saturday my sonny boy David took me for my pedicure.  He takes me every two weeks for a pedicure and a massage. Really him and Jake spoil the shit out of me. You guys are probably tired of hearing about my kids, but I have to say them, my hubby and my pups keep me going. Even on my worst days I can count on at least one of them making me laugh.

So David and I went for our pedicures. The ladies all speak in their native tongue and look to me to see if I understand them. I have been mistaken for Asian in the past so I get it. I’ve heard tell that we have Filipino in our blood line so I can see why they might think I understand them. Sure hope they’re not talking smack about us. lol

We had fun but I petered out pretty quick. I had to go home and lay down for a while. My batteries aren’t what they used to be.

Around 3:00 Lance put in to play golf. I knew there was no possible way I could pull this off. I was bone tired, there was no way I could even attempt to swing a club. Plus, my legs were a bit wonky with foot drop etc.

I told him he could go and have a good time. He looked a bit bummed to be going alone. Then I got to thinking I was being a bit selfish, I wasn’t in horrible pain or anything just dead tired. I figured I’d ride and get some air while watching him play. He was happy with this plan. So we did. It was beautiful out and we enjoyed it. Even if I couldn’t play I was still in the moment with him.

So even if we can’t do as we once did we can still be part of the moment even if it’s just cheering our loved ones on.

My son told me today that him and his bro and some friends may be going to Italy in December. The old momma would have gotten a bit unnerved about them not being around for the holidays.

My thinking these days is go and do and live it like it’s your last. I want my boys to experience everything they can in life. None of us are promised tomorrow, we all have to make the most of all we can, when we can.

So while I couldn’t play today, and was just along for the ride, I made the most of it and me and the hubby had a good time and made a memory.

That is what life is all about!

Running a chronic illness group the ups and downs ins and outs

I have to say in regards to my blogging, the journey has been positive as well as negative with my chronic illness group. The journey has had several ups and downs as well as in’s and outs.

There have been awesome times as well as some very upsetting and down right insulting and infuriating times.

This is social media by golly, it can be  supportive, with positive and enlightened people adding to the day to day, and it can be negative and hurtful, with insulting people that knock ya down.

One person in my chronic illness group had an issue that I tried time and time again to resolve, to no avail. No matter what I suggested to this person, the response was consistently negative, even betraying a profound lack of empathy for other people in far worse condition than he.  The last straw came when he annoyed one of my close friends with his pompous attitude, and uncharitable remarks.

At a minimum, we should all care for one another’s well-being. Shouldn’t that be the cornerstone of a civilized society? This persons lack of compassion and empathy hurt my soul. How could someone be so uncaring? I’m not saying I’m the next coming of Christ, or the mother Mary, but I do have a strong faith, and do care about the well-being of others. This man actually said that he did not care about others; only himself. What could possibly cause someone to be so self centered? I have no clue. I’ve had a hard life, but despite personal hardships, I’ve always cared about those less fortunate than myself. If someone is hungry or suffering, it troubles me deeply.

Accompanying one complaint regarding the quality of the meals he was receiving at his facility, was a picture of a meal that – in my opinion – looked well-balanced. To cut a long story short, I advised him to stop complaining and suck it up.

No it wasn’t surf and turf, but it appeared to be a complete and nutritious meal, so I told him as much. When he argued that he expected more for the money he paid to his nursing home, My response was that he should be grateful that he could afford his managed care. This was not received well, and along with another group member who sympathized with him, he continued to post negative and derisive comments.

After multiple requests for me to ditch him because of his complaining, I relented and dismissed him from the group.

I  hate kicking folks out of the group, and I know I can be a sucker at times, keeping people longer than I should, but damn everyone has their limits.

Truth be known I felt bad because he was in a facility. Just a heads up folks, people in a facility can be as big an asshole or bigger than the rest of us.

In his defense, the woman who encouraged some of his more abhorrent posts, posted this:

To which I responded:

What I’m getting at with all of this is that in spite of any good intentions you may have in your dealings with others, some people will always be prepared to meet your best efforts with scorn and derision.

While I love my group, I am beginning to see how dealing with so many people from various walks of life, can be very demanding. By continuing my work toward building a support network for sufferers of chronic illnesses, as well as raising awareness of MS and other chronic illness, I’m becoming increasingly aware of an ugly side that pervades online communities such as ours. I know I got very ugly with this woman, and I’m not proud of it, but I tried to handle this in a manner that was best for the group.

https://www.facebook.com/510741944/posts/10155502721871945/

The thrill of the rat race.

Yesterday as sat on my couch I heard sirens. Bay county Sheriff’s running (10-18) code (lights and sirens) down my rode.

I of course watch the traffic fly by. One patrol car followed by another then came a supervisor in a SUV hauling ass.

I sat and wondered hmmm I wonder what they’re up against. What was the call? Was it an accident with injuries? Probably not or EMS and the fire dept would have followed.

At that very moment I had a feeling wash over me. The feeling was that of sadness. I was sad to be out of the loop. I truly loved dispatch, it was a rush to get a priority call and dispatch units. It was such a feeling of gratification to hear at the end of a call that everyone was ok or at least getting the help they needed. It was also a feeling of gratification when all my officers went home at the end of the shift unscathed.

Needless to say having to retire was not on my list of things to do when it happened, but in truth I should have years ago.

I remember going to my neuro at the time and him telling me I needed to quit dispatch because the stress of the job and the shift work was horrible for MS. I think that was around 2008 or 2009.

I let him know that was impossible as I needed to work for insurance etc. Bob and I spoke and he thought I should leave too. His thoughts had been we’ll figure it out.

I went in to work and spoke with my supervisor and let her know that I probably needed to hand in my resignation. A day later I heard from the head of dispatch Cindy. She was the queen bee in charge of us dispatchers.

To my surprise I was told they would work with me and figure out what hours would work best for me. From then on I was a day shift gal. I was over the moon that they had made accommodations for me. They really did treat me very well.

It was a great job with great people. I still to this day think of them fondly.

So as I sat on my couch missing the rat race of dispatch with the crazy calls and the “frequent flyers” that you come to know by name and address. I thought man…that was a hell of a good time. I also have to say I do believe the stress helped progress my MS.

I believe with my last job, the one I referred to as my retirement job was when progressed to a point that I can no longer sit in the hot seat.

I remember looking up at the clock giving the time to time stamp my radio traffic and getting that vibration feeling. That was Lhermittes. It happened when I would bring my head up and then down to look at my screens. I knew that wasn’t a good sign. That and my vision would blur out while looking at my computer screen.

It was a great job that I didn’t want to give up. I worked with the creme de la creme of dispatch. I was dispatching police and fire at the local airport. It was very chill. Everyone was seasoned people that went there as a stepping stone to actual retirement. It was great. I felt very much at home there. I was in my element for sure.

I did start having some issues, my legs had gotten very spastic and driving became down right scary. I couldn’t depend on my leg to cooperate when it came to pressing the gas or the brake. I started using cruise and the controls on the steering wheel to speed up or slow down. It worked for a bit but the hours had been long and proved a bit much for me.

I do believe the catapult to the next big flare was a small plane that had lost power and crashed into a wooded area. It was quite the incident. I was fairly new and not used to dealing with something of that nature. A word to the wise, no matter how much training can prepare you for an actual plane going down.

Everything worked out ok. I sent out an alert and everyone came in to assist. The Chief, A-chief as well as all dispatch. All hands was on deck. That was a great work environment. It was a true blue team. I got through and even got some kudos. I’m hoping memory serves but I think it was a couple of months after that I suffered my worst exacerbation in years.

I was able to get short term disability for a while in hopes to recover and return to work. That obviously never happened. In reality I probably should never have tried to get back in the game. I’m stubborn if I’m anything, so I tried. All we can do in life is try. I gave it my best and had a good experience until that nasty ass of a disease reared it’s ugly head, showing me who was boss.

I have no regrets though, it was a great experience.

The only piece of advice I could give is to retire while you can still go and enjoy it.

Though the rat race is thrilling and damn I’ve had a good time. I’m good just remembering it all fondly. I’d be lying if I didn’t say I miss it. Although at this stage of things I wouldn’t trust myself to be able to rock an intense emergency type situation.

So retirement it is. Im bored AF at times but at least I’m not pushing myself to do something that is not in my best interest. I’m still full of shenanigans and snark just at a slower pace😉

The pros and cons of Medical Marijuana

As you all know it’s been a hell of a couple of weeks. But then when is it ever easy? It’s not, but with a positive attitude and meds we can make it through. I’ve made it through for years with this chronic illness and will continue to do so.

With all the pain and frustration from feeling like dog doo I haven’t given up hope that tomorrow will be a better day. It has been and will continue to be. Ya know what they say.. positive things happen to positive people, and all that jazz.

I got my Demerol shot from my neuro and have my orders for another MRI. Between the shot the other day and taking my meds of Tramadol, baclofen and Medical marijuana I’ve been feeling a smidge better.

Yep I said it medical marijuana. While I still had to take the other meds I did in fact have to vape my MMJ to get relief. I tried just the opioids as well as trying to just vape my MMJ. On a stand alone neither worked but the combination does give me a reprieve from the mind bending pain.

So I’m sure you’re all wondering about the title on this particular blog. The pro’s and cons of MMJ. The pro would be relief. Had I not had it and relied solely on the opioids I would still be crying my fucking eyes out.

As you all know I’ve been sick many years. Until recently I didn’t partake in any smoking or vaping of marijuana. For many years I was able to maintain just taking meds after work. I dealt with the pain and muddled on through. The pain I deal with now is very different. It’s at a completely different level. I’m in no way a punk. I’ve birthed kids, broken bones and pulled many muscles over the years. This isn’t a pain that can even be explained. So don’t judge what you don’t know.

With my life changing drastically and me leaving work and my pain level escalating by leaps and bounds I feel very ok with vaping and taking my meds when need be.

I’m still very cautious with meds because I don’t want to be that lady that got addicted. I never want to be tied to anything and am still a control freak. Which is why I feel so strongly about MMJ. Had I not had access to MMJ I’m sure I would have taken my meds (opioids) much more than the way they had been prescribed.

The fact that people have to jump through hoops to obtain MMJ and spend ridiculous amounts of money to get legal MMJ is ridiculous and down right cruel.

A couple of months ago my Holistic dr went out of business. I’m still not really clear on the circumstances, but I do know that her leaving this town has put a hurting on already suffering people. Me included suffered from her leaving. Not that I was crazy about her, she is a different bird, but the fact that she was helping people is really all that matters.

Now off to find another Dr so I can get my much needed pain relief. Is this fair? Hell no it’s not fair. I had to pay 400.00 out of pocket then pay for the MMJ itself. This should all be paid for through health coverage. As it is we get raped having to pay for ins only to be told they won’t pay for MMJ. But they will pay for opioids. We still have to take into account the opioid epidemic along with the damage it does to our bodies. This makes absolutely no sense. It’s a vicious and cruel circle.

So my title is misleading I suppose.

The pro of medical marijuana is it can help. You may need to add other meds with but it can help. It’s helped me. While some ignorant, uneducated and basically heartless people tout it as being a gateway drug to other drugs, I am here to tell you that is ridiculous. I have absolutely no desire to delve into anything other than getting relief with this particular drug.

The con? Well there really is none with the exception of the financial burden of having to pay out of pocket for the product as well as go out of town to obtain these meds.

It’s sad that in this day and age there are such small minded people in the world that we’re even still having to beg and plead to have access to something that actually can help.

http://www.history.com/news/why-the-u-s-made-marijuana-illegal

I found the above to be an interesting read. Take a minute to check it out. I should also add I feel medical marijuana is a useful tool in the fight regarding multiple sclerosis I’m not in any way saying it’s a cure, but a very useful tool.

I’d also like to invite anyone reading to join my chronic illness group. It’s a pretty cool group filled with really great folks. https://www.facebook.com/510741944/posts/10155473710111945/