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.

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.

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.

The very real fear of natural progression

I’m pretty sure we can all agree we MSers fear progression. The thought/fear that we don’t know what tomorrow brings is valid. We really do not know from day to day what we’ll be able to do in the coming days.

This has been a real issue in the past couple of weeks. I should give a little history. The week before last I had a massive headache. I blamed allergies in hopes that it was just that. Lance was sick with a sinus infection and as silly as it sounds that’s what I was hoping was going on with me. I mean a sinus issue or allergies is way better than having a new issue with a chronic illness. In my defense I did have a ton of phlegm

I ate allergy meds like it was going out of style in hopes to feel better. I was dealing and by golly I was adamant it wasn’t going to be an MS issue. I admit I kind of knew it wasn’t a sinus issue but I was trying to will it to be the case. Lol it felt like my head was unusually heavy, that and I had a couple of really intense aspirating incidents. This is stupid and do not attempt this, as it does not work. You can’t will something into fruition when dealing with health issues.

I admit some of my thinking came from me just being tired of going to the dr. I feel like I spend way too much time at dr. visits. It gets old and frustrating. They can’t really do anything so why bother?

My sweet son Jake went out of town and called me religiously to check if I was ok. The day he left I was bedridden and he was nervous about leaving with me so sick. I told him to go and have a good time. There really isn’t anything anyone could really do for me so why shouldn’t he go?

During one of the many calls I told him I was going to the neuro and he said “mom let them put you in the hospital”. He knows I HATE the hospital and will refuse going.

I hate to admit I became a bit agitated on the phone with him, telling him to “mind his own”. While I know he was worried because I was alone while Lance was at work, it made me feel like I was being treated like a child. He said “but mom if you’re in the hospital you have nurses and dr’s with you 24/7.”

He didn’t realize THAT was the problem. They take blood constantly and are in and out of your room causing a patient not to get any rest. I knew I needed rest and not constant sleep interruptions.

Now in hindsight I see I could have gotten something to help with the pain by going to the dr sooner. I wound up getting spasms in between my shoulder blades along with a stabbing pain when I turned my neck. Nothing helped. I was taking my MMJ as well as baclofen and tramadol every 8 hrs. Still nothing helped. I was at my wits end. Finally after 3 days of barely moving I decided to go to the neuro. He took one look at me, listened to my symptoms, gave me a Demerol shot and told me I needed an MRI.

He’s a great Dr that doesn’t pressure me so I took him seriously. If he had told me I needed to go to the hospital I would have. He’s not one to order an MRI or give meds just for shits and giggles. I know he is truly looking out for my best interest. He is wanting to see if there are any changes or new lesions or if this is just natural progression.

I had a dear friend Ella-kate ask me which I would prefer new lesions or natural progression. She’s newly diagnosed and is trying to figure out how to do the MS dance. She’s doing well at figuring out her bodies limitations with her MS.

My answer to her was I’d rather new lesions rather than natural progression because new lesions could possibly calm down and get back to the normal I’ve grown accustomed to. Rather than progression of the disease which would mean I’ll always be like this, in severe pain, bedridden, feeling like death.

Not that either of those is a good option, I’m still thinking new lesions is the way to go.The Demerol helped a bit, that and all of my other meds are helping, so we’ll see.

I hadn’t been to the gym, but will when I feel up to it, if I feel up to it. I’m going to try and listen to my body, which is always hard for me. I’ll attempt to anyway.

I wound up apologizing to my baby Jake for my shit attitude. I admit it gets tiring trying to explain to someone (even our closest family members) what emotions we go through when feeling poorly. He doesn’t get how stressful it is when something new presents. Does he understand the level of anxiety I go through when feeling bad? No he doesn’t and I hope he never does.

Still feeling poorly but better than I was. So today is better than yesterday and I’m hoping tomorrow is better than today. I’m going to do my level best to make the most out of my holiday weekend. I’m going to take my nephew to lunch for his bday and then rest.

I do want to report my group is back to being informative and supportive, like I had intended from the beginning. I’ve had to cut some loose to get back on track, but we’re there. My group checked on me and showed so much love while I’ve been feeling rough. I invite you all to join us.

Clearing the air

As most of you know I have a chronic illness group.

I love this little group. It’s just over 800 members. It’s a great group filled with fun loving people.

In the past couple of months I’ve had numerous people contact me about some of the sexually charged memes. I’ve had people tell me the group was nothing more than a plenty of fish page where people get on to troll. Several have said a majority of the memes were sexist or sexually explicit. I’ve even been told the images are misogynistic and something they didn’t want to be affiliated with.

Needless to say the complaints got my attention. I looked through the page and yes a good majority of the memes had been exactly that …misogynistic.

I have to admit I hadn’t really been paying attention to the route the group was going. I also admit I was a little bored with meme after meme. It’s almost like everyone was in competition to post the most outlandish meme. I found this boring. Once I saw just how much silliness was being put on the page I decided to reroute the page.

I sent a message to my friend Jerry who is a moderator on the page, to tell him what my thoughts had been and how I want to reroute. Jerry knows me for many years and knows when I say something I mean it 💯. I’ve never been one to mince words.

The plan I had for that group was originally (and still is) a place for folks to go for a chuckle, positive energy,information and support. Somehow it got away from me. I apologize to anyone that had been turned off by the content.

With all of that being said I posted this

After posting that I did a live feed explaining very plainly that this is my thoughts on how I want the group to proceed. In other words keep the T&A memes or sexual innuendo off the page. I didn’t make it a hard fast rule but I would think just out of respect people would get it. They don’t, I’ve had to repost the above 3x. So I’ll keep reposting the above and deleting what I feel has sexual undertones.

Just goes to show you sometimes even when you think you’re doing a good thing it can  go terribly awry.

I in no way am blaming anyone because I too have posted some crazy things. I take full responsibility for not monitoring things more than I did. I’m hopeful that we can get back to actually supporting each other, sharing useful information and being a true blue SUPPORT group.

Still love a funny meme but we’re more than a meme group. We have brains for intelligent conversation, hearts as big as the moon and the spirit that shines through us even in our darkest hour.

Please feel free to join us at sofaking sick and tired of MS

Gettin’ on with the gettin’ on

As you guys know summer + MS can lead to fatigue. In the past I’ve done pretty good. I’ve rocked the beach in the past and still worked in my yard. Last year and this year not so much. I hadn’t blogged the way I’d like to and basically been a lump on a log for me most part.

I’ve been exhausted, hadn’t even really participated in my group very much. To say I’ve been a spent bitch would be an understatement. My DH has been helping me around the house because even vacuuming has been hard on me.

Vision, dizziness and fatigue have been more than I can wrap my head around. Does this piss me off? Very much so. I get very frustrated with my body failing me. Failure has never been an option for me.

I’m Alex mother effin Pierce-King and I will NOT succumb to the MS bullshit!!!!

I see people in my MS groups dealing with a boatload more than what I deal with. This is always a wake up call to be grateful for the things I CAN still do. I’m still blessed and still grateful that I woke this morning. It can all be overwhelming at times but if we look at the big picture and see this from another perspective we can find the good in any situation.

There’s a fella in my group sofaking sick and tired of MS who posted about how he was three years into MS. And while he wasn’t celebrating having MS he was adapting to the day to day changes that are unpredictable.

I agreed with his take on this sassy ass of a disease and it’s ever changing ways. While I’m not happy or celebrating having it, I am grateful for the person it has made me. I see most days as a gift.

This morning as draggy as I’ve been I pulled myself up by my bootstraps and got moving. I got into some work out clothes, called my son and requested he pick me up to go work out. My legs have been funky so I didn’t trust my driving.

In true David fashion he came and got me and we worked out. I was weak and tired but I did a little something. By the time we left my head was throbbing and David had to hold my hand to walk to the car. Even my cane didn’t make me feel secure walking. I was dizzy and unsteady and probably should have had my walker, but my boy held my hand and got me safely to the car.

Kind of crazy how the roles reverse. Needless to say I’m very grateful to have his and his brothers support when I need it. So while today wasn’t my best MS day it was better than yesterday.

The different angles of perception

In this I’m looking at the different angles of perception. For instance I can look at a picture or piece of art and see something very different than let’s say Lance or my boys.

What one person perceives is and can be very, very different than what another sees, hears or feels.

There are obviously things we all see that are in our face and not up for debate. But most things can be picked apart and questioned.

I know I’ve reminisced about my boys childhood with them. While I remember things a lot more lighthearted than they do, they remember me being a firm at times a harsh mom as well as at times a tyrant for sticking to my guns.

I make no apologies. I remember telling them “I’m your mother NOT your friend. When you’re grown we can be friends until then you WILL mind me.”

I know with my own behaviors I’ve noticed some take me as harsh, snarky and most think of me as strong. Probably because at times I can/will curse like a sailor.

I believe the perception of me being any of those things is due to my gruff exterior. I’m not apologizing for any of it. I can be and most times am strong as well as harsh and snarky.

I have to give all the credit to my childhood. Growing up in Brooklyn is NOT for the faint of heart.

I remember being about 6 and living with my Aunt Jovita briefly. Her and uncle Ramoncito lived on Essex street in East NY they had a nice well maintained house. It was the hood, God knows but their house was nice.

This was a VERY rough neighborhood. There was a local gang called “The Sex Boys” Those were some crazy, bad to the bone mother effers. One night I remember hearing a woman screaming so I ran to the window to see what was going on. As I looked out of the second story window I saw a young woman running screaming down the side walk, when all of a sudden a guy was running from the opposite direction. He ran up to the screaming girl and slit her throat right there in front of my aunt and uncles house. She crumbled to the ground and he ran away like a bat out of hell. My aunt pulled me out of the window and told me (in a very stern voice) “you didn’t see anything”.

It was there and then that the lines became apparent to me, keep my nose out of other people’s business. Is this a correct way of being? No, it’s really not. As I’ve grown, I’ve seen that we can’t just mind our business and not care about our fellow man. But this was my very young perception of how things should be. Mind your business and take care of your own. In my aunts defense she was looking out for me by saying what she said. She didn’t want trouble with the local gang. I can’t say I blame her. We never spoke of it again.

Several months later my dad moved us to Starrett City with him. It was heaven in comparison to Essex street. There were rolling hills smack dab in the center of Brooklyn. Even though it was a much nicer environment, the Essex St. lesson was engrained in me.

As much as I hate to admit it it’s a NY inner city way of being. It was my perception of self protection.

My thinking growing up was to be strong, don’t let people see you cry and never let them see you sweat.

My Da always reinforced that. He always told me to be strong, so for the most part I am, but we all have times when we’re not. With MS I admit I have those moments that I’m not 10ft tall and bullet proof and that’s ok.

I guess the conclusion to this is perception is ever changing. Where I thought I had to be strong all of the time I now realize I don’t. I’ve learned that as we age we get a bit softer and not so hardened and life gets pretty chill.

Now that my boys are grown, I don’t have to be a hard ass so they grow up to be responsible young men. Thankfully they did, my job is done. I can be their friend. At this point I can enjoy a little and not be wound so tight. It’s about time, because I’m bone tired. lol

While I see my boys upbringing as being downright chill in comparison to mine, they looked at things from a different angle. Their perception was mom’s a hard ass. Luckily the older they get their perception is changing.

So to all the young people out there, don’t worry about things, your perception will change greatly the older you get.