Moderate temps and MS

IMG_5914So yesterday and today started the same as usual. Lance and I tending the dogs. Up, dogs fed and pooped and everyone happy.

I laid back down like I do most days. I couldn’t fall back to sleep so I took advantage of the feeling of actually being clear minded and wide awake at the same time along with decent balance. What is this feeling of normalcy?

As I’ve stated in other blogs, MS is a tricky bitch that likes to remind us of who’s in charge. With that being said most times when I feel wide awake I don’t have energy to do anything or my balance is way off. There are several different things that may deter me from going about my old routine such as vision, pain, dizziness etc.

So having energy, clear headed and decent balance was a win,win. Hot damn!

I mulled over what task I might accomplish and thought closets! I do Spring cleaning of my closets every year. Last year this time I was just out of the hospital from getting plasmapheresis for a flare I just couldn’t shake. That was the one in which I believe my MS progressed. Needless to say I was in no shape to do my Spring cleaning. My closets desperately needed to be cleaned.

Like I said I do this yearly so a whole year of not doing it left them cluttered beyond belief. I have a ton of business clothes. Really nice business clothes. I’ve had some pieces for quite a while. As well as some with tags still on them. While going though my closets I thought to myself no one should accumulate this much stuff. Good thing I clean my closets once a year or I’d become a hoarder. I LOVE to shop, apparently a bit too much.

So I thought to myself, why in the hell do I have all of this? I’m not working any more. What was I holding on to? I even had several pairs of really pretty high heels. Like what the hell was I holding on to them for? If I ever do get to where I can wear some I can get more. Although at this point I don’t see that happening. But I’ll always hold out hope. I’ve always loved heels because they make me feel really put together and very feminine.

I sat for about a half hour looking at one of my closets. I decided that’s it I’m going to get rid of my work clothes and heels. I think I was holding on to the heels as a part of the old me. At this point I’m ok with being this me, the newest me. I may not wear heels but I’m still the sassy gal I’ve always been, just in flats.

I wound up bagging up 2 huge filled to capacity leaf bags of business clothes along with heels and some boots. I dropped it all off at Goodwill. I hope it helps someone out there to have some nice stuff to go to work in. My kids thought I should have sold it instead of donating it. But I’ve always donated so I will continue to do so. It does help people. I’ve also shopped there myself back in the day,back when I was young and didn’t have two nickels to rub together. So I’m good with paying it forward and all that jazz.

Then when all of that was done I washed all the dog bedding and Lance washed the dogs when he came home from work. He’s a good man and always super helpful. We are definitely a good team.

The pain from the days events of course caught up to me. I was moaning in pain most of the night. I smoked as well as took my pain meds. It was that severe pain that nothing really gets a hold of. The kind of pain that could make even a badass cry.

It was a sleepless night but I did get a couple of hours so I woke tired but still clear minded etc like the day prior. Was I going to waste this feeling? Oh hellllll no. We tended our pups and then got in our yard to do yard work.

The yard came out great! Still have more to do in my flower beds but it’s an ongoing thing that gives me a lot of gratification. I only have so much energy so I figured I probably should rest before I hurt myself.

I believe my feeling of feeling pretty good came from the moderate temps. Humidity is low and it’s pretty nice out. For us MSers moderate temps are a life saver. On days like today, days I can actually get around and do a little something, far outshines the rough days. The good days make me feel human again not like I’m just a blob of flesh and bones that can barely function.

I’m hoping this is a trend. Since winter the pattern has been a day or two good and then 3-4 bed rest. It used to be very different. It used to be I’d need a day of rest after a lot more work than I do now to recover.

I’ll see and let you all know. Wish me luck. I’d just shit if I could get a whole week of feeling pretty good.

I didn’t do anything too exciting or crazy but damn it felt good to feel human for a couple of days.

This is one of my many MS songs Float on. We all (MSers)just float on just waiting for the next peak or valley

The little doer that could…on occasion

With this entry I plan on going into my strategy for dealing with SPMS. I have been looking into and reading up on how all of this goes. As it turns out it’s much like RRMS except you don’t have periods where you are able to rehab back to prior flare up status.

I am not near the person I was before February 2017. My decline is apparent to those that see me on the regular. I’m still the gangsta beotch I’ve always been, just slower….a lot slower. I do admit I didn’t think i’d get to this point. Not looking for a pity party just stating the facts.

This is what I pulled from The Multiple Sclerosis Trust:

Many people who are initially diagnosed with relapsing remitting MS find that, over time, their MS changes so that there are fewer or no relapses but disability is increasing. This is called secondary progressive MS (often abbreviated to SPMS). It is called ‘secondary’ because the progressive phase happens second, after the relapsing remitting stage. ‘Progressive’ is the word used to describe the change towards more disability.

People with secondary progressive MS may have an occasional relapse but, generally speaking, relapses don’t happen in SPMS. Although disability increases in secondary progressive MS, the rate at which this happens varies from one person to another and there may be times of improvement and times when symptoms stay the same.

What are the symptoms?

There is a wide range of possible symptoms but most people only experience a small number around the time of diagnosis and don’t go on to experience them all.

It is common to experience walking difficulties or poor balance and coordination. Bladder and bowel problems, pain or depression may occur.

People with secondary progressive MS may have difficulties with short-term memory, concentration, finding the right word and thinking things through. These are collectively known as cognitive symptoms.

Fatigue is very common. This is not normal tiredness but an exhaustion which is out of all proportion to the task that has been undertaken. Fatigue can be mental tiredness or physical tiredness.

There are other symptoms which people with secondary progressive MS may experience. As with all types of MS, the symptoms vary a lot from one person to another and not everyone will have all of them. Which symptoms are experienced depends on where the lesions are located in the brain and spinal cord.

Not all symptoms are obvious to other people. For example, problems with fatigue or cognitive symptoms can have a big impact on the person who is experiencing them but they may be invisible to others.

It will take time to learn about your MS, how to manage it well and to become your own expert. You may find that a task that is easy one day may be surprisingly difficult on another if your symptoms have kicked in. Try to accept that this is typical of life with MS and that you are not to blame.

Will I become disabled?

You will have your own way of thinking about disability and it will be up to you how you define yourself. MS may affect what you can do but only you can decide if this is disabling. As the symptoms of MS vary, you may have different views of yourself at different times.

Living with secondary progressive MS means living with uncertainty.

Symptoms may be up and down and you may be concerned about how well you will be on a particular day.

The bottom line

Nobody knows what life has in store for them. Try not to worry too much about what might happen or assume that MS will have an effect on some particular aspect of your life. This time and energy could be spent in a more positive way on something that is important to you right now

So with all of that I will admit I am a bit unnerved at the change in my status, but am more determined than ever to fight like hell. After all we are all different and Dr’s aren’t Gods.

I admit I am worried what the future holds. I’ve thought a lot recently about if God forbid something happens to my sweetie? He is a tremendous support for me, as are my kids. I am worried about becoming a burden on them. I am the one that does for everyone. I don’t want them to have to tend me. I am if anything a prideful woman who doesn’t want to be considered a job vs a wife and mother. So this is a real concern for me.

My son Jake asked me to lunch today and I declined. It’s raining and I don’t like going out in bad weather. But I also declined because I felt it was an invite out of obligation. It’s his day off and really didn’t want to spoil it with having to drag me out to lunch. So I told him I was going to work out and I did. Woo mother effin hoo.

I’ll be starting Gilenya when they get all the test etc in place. My dr. figured it wouldn’t hurt anything and might stave off some progression. He said if anything he was looking at quality of life for me. I’ve heard that term a lot since the February before last and quite frankly I think they need to come up with another term. It’s a little bit of a downer to say the least.

So my strategy is going to be to continue to be the asshole I have always been and possibly stepping it up when need be. Don’t tell Lance and the kids it’s a surprise. lol Gotta keep everyone on their toes by golly. I’m going to do my level best to exercise every day and enjoy the shit out of the good times.

I felt the need to admit I do have concerns and worries that are legit, but there are people with a lot more issues than mine so I am still grateful.

The Peaks and Valleys of life and MS

I start with the above title because I as you all know am part of several FB groups. I saw where a lady posted a question regarding anger and MS.

She was curious if this was an MS thing or not. My response was It’s just part of life. Angry times,happy times. Ya know peaks and valleys and all that jazz? “

I don’t understand why this isn’t just common sense. Life is hard as a whole. Even under the best circumstances we have trying times in our life.

We all have melt down at times. I know I do and I’m sure the rest of you do. I had those times well before MS as well.

Now in her defense she may be on medication that is making her emotions surface even more. I don’t know all of her circumstances.

But with all of that I say we should not hold ourselves to a standing where we can’t have angry moments. We’re human, it’s normal and it’s ok. We don’t have to be perfect people. Life is messy at times and it’s ok for us to be messy too.

I am more than willing to say I have angry moments,sad moments and happy moments etc. when I have an issue I usually steer clear of everyone as not to be shitty. Because yes we can be angry, sad etc But it’s never ok to down other people. That’s not fair to the general public.

I had an incident with a fellow MSer who made a snarky comment about a positive meme I posted. I then saw he also made another shitty comment on another meme of mine. I know this man is very sick with MS as well as another life threatening condition.

While I feel bad for this man and my heart goes out to him, I felt the need to pull his coat and let him know that being sick is not an excuse to be shitty.

I can not stand and will not tolerate a happy shamer. If I’m in a funk because MS is kicking my ass I shut my fucking mouth and keep it moving. If more people did this we might not have all the negative behavior we have in the world.

So that’s my bit of advice for everyone. If you’re having a rough time don’t spread the negativity to other people. It’s poison to someone who’s trying their level best to keep it positive.

Life is messy and hard. We all should try to encourage people out of the valley not drag them down into it with you.

Regardless of my situation I absolutely love to see folks doing well. We should all practice this way of being.

Secondary progressive?

So today I went to my neurologist and that’s what he said. He is a lot more of a straight shooter than the last moronic neurologist I went to. He’s not a mealy mouthed jerk like my last one. He didn’t tell me what a nasty disease it is and him haw around about it. Just the straight facts. The last one went so far as to tell me I was primary progressive and then change his mind. Like really? What professional does that?

I have to say it’s a hard pill to swallow. I kind of had a feeling I had progressed but hearing it sure didn’t make me feel any better. He had my records from my other neurologist and MRI discs. That coupled with me not having any stamina at this point and not being able to rehab after the flare over a year ago he feels this is where I’m at.

I’m far from stupid and really didn’t need him to tell me this. I mean come on 3-5 days bedrest after 1-2 days of activity kind of says it all. I knew this but we have this thing it’s called denial. You know that thing in your head that says fuck this there’s no way in hell I’m going that route. Yeah I’m guilty of it. I covered the sun with my hand.

Eh, with all that being said I’m still going to rock MS!! I’m going to fucking rock secondary progressive like a mother effer!! On decent days I’ll still do my hair and make up and dress cute. I’m not in a wheelchair so there’s that. I’m positive I have a great life still and all, because I’m a badass and know no other way to be!

I’ll still attempt to play golf with my cutie even if I have to rest all week to have one or two fun days.

My family will see me through this and we will continue to be “that crazy family”. We’re fun, we’re loud and by golly we have a good time and at the end of the day that’s all that matters.

The neuro also said he’ll forward everything to my social security atty so they have proper documentation on hand. This is a good thing for sure, maybe now Social security will get with the program and not make me beg for what I’ve worked my whole fucking life for.

I will save you all from my rant about Social security and end this with enjoy whatever good times you can, life itself is a gift❤️

Flight or fight?

I start this entry with Flight or fight because I remember when first dx’d with MS I had the urge to run.

I’m not sure if everyone else gets this feeling when faced with the fear involved with the whole MS diagnosis, but I damn sure did.

I remember laying in my bed with a panic feeling in my belly. Thinking hmm how can I get out of this shit I find myself in? My body was breaking down and I had nowhere to run. I was stuck like chuck and fucked.

Since then I’ve found myself feeling this way on occasion. Trying to plan what my next move was. There’s really no plan to be made when dealing with something so unreliable. My body has shown me time and time again it can’t be depended on to carry out simple tasks that I want it to.

The other night I was sleeping, I rarely sleep well so I’m thankful for the time I was in a deep enough sleep to actually dream. The dream I had consisted of Lance and I walking through a maze that was made from boxwood bushes. I was leading the way because I’m a bossy bitch even in-my sleep.

In the dream the bushes was well over our heads and a very tight fit and over grown. We had been walking a long way and I was very tired, my legs was about to give out. We got to one area that was too tight for even me to squeeze through. In the dream I was in panic mode because I couldn’t make my way through and didn’t have the strength to head back the way we came.

This is much like how I feel in my day to day I suppose. Trapped in a failing body with nowhere to go. No way back the way I came.

This would be the reason so many of us MSers deal with anxiety. We’re trapped and not able to find a way out. Just picture it let’s say for instance you’re car is broke down and you have no way of getting help. No mechanic to help and you can’t get back home. This is much like I feel when dealing with dr’s they can’t fix me so I’m stuck like Chuck. No way back to the healthy Al, my comfy place, my healthy reliable body I could push and push and still worked for me.

I’m assuming this is where this dream came from. I hadn’t had any real relief since the last huge debilitating flare last February. I put on my happy face, hair and make up as usual, but I can’t get back to the place I was before that last really big flare.

This is as they call it natural progression. I am of course aiming to rehab but it’s definitely getting harder to do.

So with this in mind I have to give it to God like I have time and time again. I remember laying in bed when first dx’d praying and crying with pure dread in the pit of my tummy. Prayer comforted me then and will comfort me now.

I know a lot of people say sending prayer 🙏 or do that little emoji thing on fb and don’t actually take the time to say a prayer. When I say that I legit mean I’m praying for you. I stop what I’m doing and say a little prayer. I believe people think just saying sending prayers is enough, it’s not. Taking the time to say an actual prayer for someone is a gift from you to them. Take the time to actually do it rather than just saying you did.

So with all of that I end this with saying if you’re saying you’re doing it, please actually do it. Don’t be a phony bologna. Happy Tuesday folks. Let’s make it a good one🌈

The Do’s and Don’ts of MS

I start this with entry with the do’s and don’ts of MS. Pretty serious shit right? Not really I’m just kidding. I know I’m an ass, but thats my coping technique .  Everyone has their own way of dealing. Mine is by being a jokester. Ya know putting a funny spin on a shitty disease is pretty therapeutic. So here I go…..

There aren’t any do’s and don’ts of MS. Everyone’s MS is different. I guess I should start with a little history and then go on to my way of dealing with MS the gift that keeps giving.

I was 34, I was a realtor at that point in my life. The market was at peak and I was cleaning up. Kicking ass and taking numbers. My boys was 14 and 12. I was married to the man of my dreams. I was walking in tall cotton as they say in the South.

Then suddenly one day my right arm started going numb. Hmmmmm curious. I chalked it up to a heavy purse. I’m known for carrying anything and everything in my big old purse.  So I empty the purse and cut it down to the bare minimum. I cut it down to make up, money and my handi dandy knife. After all what hispanic gal would go about her day without a blade handy. Just kidding it was a Swiss army knife. Problem solved right?  So I thought. It didn’t help. I went to my GP because the numbness was spreading. I also had a rash at the base of my scalp. A couple of weeks prior I had gotten a tetanus shot for a cut and experienced flu like symptoms. So my GP sent me to a neurologist. That neuro thought I had a basal migraine. I wound up finding another Neuro after several months of no real answers and a ton of crappy meds that didn’t help. By that time I was completely dead on my right side and I was dragging my right leg. The new neuro did the necessary test and came back with a diagnosis of MS.

I knew nothing of this disease. I was scared shitless!!!! As I’m sure most of you have been. Long story short I educated myself. Stayed on top of the different research etc. In other words I took as much control as I possibly could. The other thing I did was I didn’t wallow in self pity. I pretended for many years to be A ok. Ya know what? I was A ok to a certain degree. But I wasn’t completely honest with family and friends. I didn’t let them see the struggle for what it was. In my case it kind of hurt me because no one really knew how to deal with me as my disease progressed. My bit of advice on this subject is tell people the truth. Tell them the struggle when you need to but don’t, I repeat don’t get lost in this disease. Whatever you do don’t let this shit consume you!!! Speak your piece and then move on.IMG_3847.JPG

I went to different MS meet ups etc. These functions depressed the shit out of me. It was a bunch of really sick people gathering to complain. Both the women and the men appeared to have lost all will to live. I was like WTH? I’m not like these people. I still put on my make up, did my hair and dressed snazzy. I refused to let MS steal my sparkle and shine. Whatever you do being a guy or gal continue doing the stuff you did prior to MS diagnosis. If you did your hair and make up before please continue to do so. If you played Basket ball, golf or other sports prior to dx please continue to do those things on good days if you can. Don’t fall into the I’m too sick to do anything. I don’t primp or play golf on bad days but you can damn sure bet on a good day I’m doing all the things I love. IMG_3897.JPG

Don’t lose YOU behind being sick. YOU ARE MORE THAN MS!!!!!!

With all that being said I also encourage a healthy diet and exercise. I don’t recommend any particular diet because in my case Ive tried many different MS diets. None have worked for me. I still progressed. Some people I know do certain diets and manage quite well but in my opinion there is no cure diet. I do agree that what we put in our body is important but to say a diet cured someone of MS is ridiculous. I personally think that people that claim they have been cured of MS from a diet probably have a mild form of the disease. But thats my opinion. Do as you wish. We all need to do our own thing to see what’s a good fit.

Another piece of advice is make sure you find a dr. that you feel comfortable with. I’ve been through several. Don’t let a dr. bully you. Your fears are valid. Your symptoms are real. Don’t let anyone make you feel crazy just because they’re not familiar with your particular situation. Always remember you are paying them NOT the other way around! Be your own patient advocate. You have a mouth and a voice a deserve to be heard!

My last bit of advice is to stay as positive as you possibly can. Always remember it can always be worse. Don’t concentrate on what might happen, concentrate on whats going on right now. Life is full of what if’s that never actually happen. My dr’s have told me over and over Id be in a wheelchair years ago. Even the last dr. I left insisted i’d be in a wheelchair in a couple of years. I’m not! I do go between a walker and a cane. But I will rehab again just like I have over the past 14 yrs. I still walk, garden and play golf when I feel up to it. I’m not letting some dr. dictate how I view my disease.

I do admit my life has changed drastically, I had to leave a career I loved and lost the ability to drive for the most part. But i’ll be damned if I lose ME. I’m still Alex the cussing, silly, life of the party. I’ve learned to take things slower and rest when need be.But I never lost ME. Please don’t lose you. We’re all here for a reason. Make it count!

Some get angry because of this illness. I’ve been sad and stressed and disgusted with my progression over the years, but at the end of the day I’m grateful for the true appreciation I have for the little things. What gave me this appreciation you ask? MS thats what gave me this appreciation. People walk through life perfectly healthy and don’t have the appreciation I have for the little things. You can make your life a positive experience or a negative one. That is purely up to you. Appreciate what you do have, there is someone out there wishing they had what you have.