jen – Page 2 – I'm Just Living This M.S. Life

What day is it??…Friday you say.?. THANK THE UNIVERSE !!

I woke up this morning and had no idea what day of the week it was. I had to drag my sorry, tired butt out of bed and into the living room. I stood in front of the TV and waited for the newscaster to tell me what day it was…… Yaaaaay, they said it is Friday today.

I couldn’t be more ready for the weekend. I still took a pile of work home so I can get a bit ahead. This was a Hellacious work week. Some days you just wish you called in sick. It can feel like you never do anything right.

I had one of those days yesterday. I have been working on a project off and on with our IT department for a couple of years now. We have been forced to delay the project completion many, many times. Sometimes other priority projects are put on your desk and you are forced to push back what you have been working on.

Then, out of the blue, this “couple year long” project becomes a ‘Get it finished in the next 3 weeks’ project. Interestingly enough, week two was interrupted by ‘maybe here, maybe there, maybe back here again, maybe we really don’t know where it will be…..’ Hurricane Dorian. Week number two ended up only being 2 work days long. We went back to work on Thursday.

Well, the day before yesterday, the IT department had ALL of their project work done. I was up next. I had completed the instructions and the how to’s. Everything seemed like it was going to go smoothly.

Funny thing is….I find that when I assume things are going to go smoothly……..they usually Don’t. At the last minute, the brakes were put on my training sessions. I was totally blindsided. Come to find out another department has a specific protocol for communication within the corporation. This fact was never conveyed to me. I had discussed my plans with this department….and assumed everything was good. I wasn’t told to alter my plan or to proceed in a different manner.

At the last minute I am called into my bosses office…..(I already knew there was some type of problem because of an email). I knew I didn’t do anything wrong…..but my Boss was acting like I did…..like I missed some HUGE sign telling me to ‘STOP…DO NOT PASS GO….DO NOT COLLECT $200. ‘……lol, thank you Monopoly for this phrase….I will remember it forever….lololol

He was asking me questions in his really Vague way….we all normally have to ask him more than once to explain his questions. I will come right out and say “I’m sorry, I don’t know what you are asking me. What is it that you are looking for?” So the more I asked those questions, the more aggravated my boss became. I ended up in tears.

My boss is a wonderful, brilliant man. He would give you the shirt off his back if you needed it…..but he gets aggravated and kinda mean very easy. You end up either questioning your own intelligence or feeling as small as a bug.

I left his office and completed what he told me to do….with silent tears running down my face. Once it was done….I put up a sign that said “going on Break and then into the warehouse to fix a computer program problem”.

I went to my car, started it, cranked the AC since it is in the upper 80s lower 90s, and BLASTED vintage Avenged Sevenfold on the radio. After about 10 minutes, I thought I was done “Ugly Crying”….lolol. I really did have to go into the warehouse and deal with a software problem. I had to call the developer and have him walk me through the issue. 5 minutes into the conversation…..I have silent tears running down both cheeks…..I’m trying to not sound like I am all stuffed up from crying. That is all I needed….for the guy in a different country to know I was crying like a baby. Other warehouse associates were walking by me…..surely noticing that I was crying……and trying not to let me know….that they knew.

From the time I went to my car, worked with the developer, and finished answering questions about the soon to be implemented ‘project’ it was about one hour since the ‘boss blow up’ episode. I went back to my desk, put on my headphones, blasted Avenged Sevenfold, and took my lunch break. My phone continued to ring….with questions pertaining to the upcomimg project that I wasn’t able to verbally expalin…I ignored it. Normally I will answer the phone during lunch and help someone if I can….but not yesterday. NOPE, wasn’t going to do it. Screw It. Let people call in confusion. If I had it my way I would tell the callers to direct their questions to their department heads. That is petty though, and I try to NOT be petty.

So….as I said, I am just GLAD it is FRIDAY !!!! Hopefully you ALL have a WONDERFUL WEEKEND !!!

Dorian……. IS it going to get Windy ???

Okay, I have had enough. I have had enough of the 24 hour coverage. Our forecasters are acting like we are going to still have this horrible storm……when we are not. The way it is right now, we are going to get tropical storm force winds. WE GET THAT EVERY 2:00 pm SUMMER DAY THUNDERSTORM. Floridians are used to this kind of weather. Dorian is going to stay quite a ways away. Yes we will have some storm surge and some flooding along the coast. That will be terrible for some people, but flooding like that can, and sometimes does, happen during our Bad Afternoon Thunderstorms. The forecasters are putting on a show now……..trying to keep everyone on edge because they made such a huge deal of Dorian WAAAAAAAY before they should have.

People living in the Bahamas are the ones really suffering and they will for a long time to come. Dorian FLATTENED huge areas of land. Dorian as a Cat 5, hit the Bahamas like a Bulldozer. Residents there won’t have power, water, even shelter for what will probably be MONTHS.

Forecasters……to you I say…..Focus on where the real need is. I’m in Brevard, Florida……in the Titusville area to be exact. I HAVEN’T SEEN EVEN ONE DROP OF RAIN SINCE LAST NIGHT….and that was a tiny, tiny amount. If you turn on the news….I should be getting Gusty Rain Bands….etc…..etc.

I walked all 3 of my dogs this morning……took about an hour and a half. Beautiful weather, sunny, nice breeze…….sometimes a strong breeze……..BUT IT IS JUST A BREEZE.

beautiful sky over my house

My front yard on September, 3 2019 @ 3:10 pm…… according to the news I should be getting gusty rain bands right now…… I haven’t received ANY ALL DAY.

If you believe in some kind of higher power……whatever or whoever that may be…..offer up a prayer for those living / staying in the Bahamas.

I will video…or take pictures if I can (It may be dark out) of any storm happenings here.

DORIAN….it’s going to get Windy.

image from The Weather Channel @ weather.com

So, we are going to be paid a visit by Dorian in the next couple of days. YUP, Hurricane Dorian. I’m watching the news at 19:42 on Saturday the 31st. The update they just gave stated that the Air Force plane reported a gust just above 160 miles per hour. If that was a sustained wind , Dorian would be a Cat 5. Still only expected to be a Cat 4 though. As usual, what is called the “Cone of Uncertainty” has wobbled from left to right and will probably continue to do so. The forecast path has changed many times. It will change a couple more times until the hurricane gets where it’s going.

They should put another official forecast out soon. lol….just another Floridian Summer / Hurricane / Summer Season.

Helping put up shutters (metal shutters) in the middle of the day during the summer…..is not a pleasant experience for anyone. If you have M.S. though, it can be awful. I helped with the first 5 panels / covering our master sliders. WAAAAAAAAAY too hot. After 20 minutes of being outside working with hot metal, sun shining down on me, sweating like crazy, I was shaking and felt like I was going to pass out. Luckily our son came out to help. Back inside for me, cold drink, fan, sitting on my butt…..after about an hour I felt better. Problem is I am STILL Exhausted. I hate that the heat can Screw with my M.S. Brain. Times like these I want to move up north where there are more cold days than burning hot days.

The pictures here are from N.A.S.A and ABC News.

From ABC news…..one of many “spaghetti models” for Dorian

Secondary Progressive and PUPPERS !!!

I saw my Neuro today. It was my monthly Prescription appointment, and the review of how the Effexor is working. So the new medicine seems to be working. We will know once I reach the full dose and have weaned off of the current med.

As far as my balance problems are concerned….you know, where I get up and am not stable…where I almost immediately start to tilt over or stumble to the side and fall, it isn’t due to any new M.S. inflammation. She said it is just due to the M.S. Basically I have transitioned to Secondary Progressive M.S. and even if I don’t experience a recognizable exacerbation this is just the way it is going to be. I will continue to accumulate damage and see weird things like this happening. New symptoms will appear and stay, and old symptoms will reappear and never disappear.

I guess this is the way it will continue to progress. I am 43, and now I have at least 1 symptom that will be with me forever. I wonder how many more symptoms will show up in the days to come…..how many symptoms will never go away. How will those symptoms affect my life? I’m still young. Will I be able to walk in 10 years? Will I still be able to take care of myself in 20 years?

My husband keeps pressing me to ‘talk about our financial future’. I can’t even imagine 10 years from now…..much less 20 or 30 years from now. I told him all he needs to know is that I have a 401 K that I have contributing to for about 15 years, and I have a mutual fund that was set up for me when my grandparents passed away. I told him I am not where I want to be “balance” wise but that I don’t intend to quit working until I just can’t function there anymore.

AND so ….I take it one day at a time….and only look 5 ish years into the future. I won’t even think about plans out further than that. I’m not even guaranteed to have that next 5 years unfold like I want it to.

Keep moving forward, stay positive, turn and walk away from those that are negative, and don’t feel bad for ‘refusing to talk about’ things before you are ready to.

The only real advice I can give is……Rescue a few Black Mouth Curs….Let them cuddle up with you…..give them lots of snuggles, back rubs, and scratches behind the ears. Allow them to lick your chin, put their wet noses in your face, and flop their 104. degree F bodies up against yours while they sleep.

The love of a pet is pure….they love without conditions……all they want is YOU. You are their WORLD. You come home and they treat you like a looooong lost friend. Nothing makes them happier than seeing you. You can’t beat that for some great MS therapy.

Words for a BAD M.S. day

Words describing a Bad M.S. day. Now, let’s just start with my favorite F-word.

Frustration, Irritation, Brain-fog, Annoyance, Exasperation, Anger, Hypersensitivity, Agitation, Irritability, Vertigo, Confusion, Stutter, Degeneration, Stupidity, Restlessness, Chaos, Tangled, Trip, Fall, Hassle, Sh*t, Confusion, Pain, Ache, Cramp, Unknown, Discomfort, Hurt, Sore, Hell, Misery, Burn, Twinge, Pins & Needles, Twitch, Scared, Anger, Pinch, Hate, Itch, Mope, Prick, Throb, Sadness, Clumsy, Forgetful, Resentment, Unsteady, Numbness, Distress, Exhaustion, Difficulty, Exacerbation, Peeved, Atrophy, and Damn-It.

Karma….or just Bad Luck?

I’ve heard people say, “If I didn’t have bad luck, I wouldn’t have any luck at all.” Sometimes I feel that way…..just unlucky. I think we all do at one point or another. When I sit back and think about it though, I’ve actually been very lucky. I have amazing children that have grown up into responsible adults. They were never in trouble at school. They behaved. I have the love of 3 sweet, goofy dogs. I am still walking and my M.S. isn’t as bad as it could be. I guess that can be considered good luck.

Trying to stay positive, and trying to believe that I have the good kind of luck is really hard when things start going wrong. There is the plumbing problem with the burst pipe in our foundation and the clothes dryer that broke while full of next weeks work attire. Then there are the ‘black comedies’ of the luck world. The quirky, crappy, annoying things that cause EVERYONE AROUND YOU to laugh like Hyenas. “We’re not laughing at you, we’re laughing with you.” they say …..but you’re NOT laughing. Sort of like the morning I climbed out of may car, started the 10th of a mile walk into the office and the sky opened up and peed on me, or when that little strap between the toes on my sandals broke and I flung my shoe across the room. I was MORTIFIED. …..Glue….Staples…..Duct Tape..???

I hate thinking that ‘lucky’ is a real state of being. If good and bad luck truly exist, life is not doling them out in equal measures. I mean why would one group of people be lucky while another never seems to get a break? Luck seems too random.

I much prefer imagining that I was a horrible person in a past life. Someone like Snow White’s Evil Queen Step-Witch or Sleeping Beauty’s Maleficent. Then it would be Karma, lolol. It would be punishment for my evil deeds. 🙂 I would deserve this Unlucky Luck. It would be Karmic justice.

Throwing the idea of luck, good or bad out the window has allowed me to accept life for what it is……a series of misadventures, millions of giggles, an equal measure of tears, and a shooting star or three.

The ‘Oh Woe is Me’ crap, just isn’t me. Life can feel like a Shi*show. Just remember EVERYONE has some version of the Shi*show playing out in their life. When I remember that I’m not the only Actor in this “show”, I suck it up and find a way to deal with it. Hell, if I let it get to me, I might end up a bitter, grumpy individual who makes everyone around her miserable. Then I’d probably come back as a Worm in my next life. Better yet, as a Worm someone will use for fish bait…..think about that Karmic payback.

Resentment…with a side order of guilt.

Resentment and guilt. I have felt both while dealing with my M.S. As all of us with Multiple Sclerosis know,this illness sucks the life right out of you. I mean that in the sense of the tank being empty. You run out of gas as that M.S. fatigue sets in. You turn into a lump of lead. You lay down and that ANVIL Wile E. Coyote used to buy from A.C.M.E. has been laid on your chest. You rest for a while and then start to feel guilty for being in bed so early. “I need to do dishes, laundry, vacuum the carpet, then sweep and mop the tile. I need to go to the grocery store to get dinner and stuff for the kids’ lunch tomorrow. I can’t forget to make cookies for their class this week……” While feeling like a waste of space you attempt to roll out of bed and it is like trying to pull yourself out of a tar pit. Every movement seems harder than the last. You get up, make coffee in a vain attempt to get some energy, and start taking care of your to do list.

Halfway through the list you are miserable. You are so tired you can’t even hold a plate up to wash it. It keeps slipping out of your hand. Damn it, you broke another one. Now you start to get resentful. You can’t stand how people still expect you to be a super mom…..super wife…super worker….and superwoman. At least it feels that way. You hate the fact that everyone else gets to have fun while you, who had to do all the house work by yourself, can’t lift an arm much less do fun things with family and friends. You resent the fact that you are the sick one and that no one helps you. Why is everyone else allowed to be healthy???

Yes we all get resentful living with M.S. It is a bitter pill to swallow but even the nicest of us feel like this once in a while.

With M.S. though, it isn’t just the patient that feels resentment. The partners, husbands, wives, children, friends, family, and even coworkers harbor some resentment toward your M.S.

You take a lot of time off. Of course your coworkers don’t know that the time off is for doctor’s appointments. Or, they think you are on a vacation and living it up. When in reality you are home trying to get past new symptoms from the latest exacerbation.

Friendships can wither as your priorities change. You don’t call as often as you used to and when you do you never feel good. You rarely go out for ‘Girls Night’ anymore. Friends may drift apart.

Partners, husbands, and wives may resent your M.S. because it swallows up so much of your life. Most of your focus is on keeping the Monster at bay. You don’t get to dote on your significant other as much as you used to and sometimes “Romance” takes a back seat. You are too tired, can’t get aroused, can’t reach that peak, and sometimes just hurt. Significant others can feel ignored and neglected.

Children may feel ignored too, because you can’t play as much as you used to or because you are always tired and have to rest. They may be scared. Knowing you are ill, and not having the guarantee of ‘Mommy/Daddy’ is going to get better, can be terrifying. They may get angry with you, thinking it is your fault that you aren’t getting better……Why can’t you go to the game or dance recital, why can’t you take them to the movies, or to the beach for a swim? Is that a child’s version of resentment?

So what can you do? Do we suck it up, force a smile, drink lots of coffee, make phone calls to friends, schedule a date night with your other half, send the kids to the movies with their aunt, and pay someone to come clean you house ….just this once? Most of us probably do some version of this. We try to keep it together, we try to be strong for everyone special in our lives. Sometimes it is too much, but sometimes it is just enough. Enough to remind people how much you really do care.

On the flip side….I also think if we are going to do the suck it up work mentioned above we need ME time. I mean… ALONE….me time. Time to recharge. You can book a night at a hotel and just sleep in the nice cold room, order room service, and watch t.v. Yaaay, you don’t have to clean either . One of the best things would be, not being required to ‘look presentable’. Screw that, I’d make sure there wasn’t anyone to look presentable for. I really do mean ALONE me time. I’d have messy hair, wear my threadbare pajama shorts and tank, go barefooted, and then enjoy a bottle of wine. For the finale, I would put in some ear plugs, drop the room temp to ice box levels, snuggle under the covers, and sleep for as long as I wanted.

Best wishes, and don’t forget to schedule that ME time.

Ha Ha !!! Now it has a Name.

Yup, now it has a name. That EVER ANNOYING loss of words we with M.S. suffer. Right in the middle of a conversation your mouth stops moving…you are blubbering…getting more nervous with every second. The more nervous you get, the worse the blubbering gets. The person you are talking to is staring at you, expecting some sort of response. You can SEE the word spelled out in your head. You see a picture of the thing you want to talk about. You just can’t spit it out of your mouth. You feel the situation getting worse. You still haven’t said anything….It is going on 45 seconds and you have a very pained look on your face. You TRY to spit out the word. You make the shape of the first letter with your mouth….air blows through your lips….but no sound comes out. You hope, hope, hope, and hope some more that the person you are trying to talk to just thinks you have a stuttering problem. Issues with stuttering are so well known now that no one thinks twice about it. This whole time you are wishing you could speak and moreover you are hoping you don’t look like a moron. Finally something falls out of your mouth. It sounds forced and maybe slightly slurred. You think about what you just said and are horrified. What you said had nothing to do with your conversation. It was totally out of left field. Oh My God….you are mortified. How do you recover from that?

This happens to me ALL the time. It happens more when I am stressed or under pressure, when I have been put on the spot.

My boss knows about my M.S. and has been very understanding. He has been a friend and supported me through the bad M.S. times. As my boss he has a job to do and the job isn’t always easy. Sometimes he briefly forgets about my struggle with this issue. When he is aggravated he gets loud and will put his workers on the spot with difficult questions. I inevitably end up stuttering and blubbering….I feel like an idiot….I have to squeeze my eyes shut….turn away and hope that the STUPID word finally flies out of my mouth.

On lucky days I can eventually get the word out, even if it is a little late in the conversation. On bad days, I clam up, get pissed off, and give him the glare. I will just shrug my shoulders, look him in the eye, and refuse to speak. Usually he gets the picture, relaxes, and takes the pressure off. Once that happens I can usually coax my brain into behaving.

I found out today that this is called….wait for it………………………………..wait for it…… Fumbling Word Vomit.

LOLOLOLOL…..really??? I love it. That is a perfect name for it. It expresses the anger and disgust that us with M.S. feel every time we are struck dumb with one of these episodes. Fumbling Word Vomit…..BWAAAHHHHHAAHAHAHA… I want that on a shirt. “Beware, conversations usually result in a severe case of Fumbling Word Vomit.”

my Multiple Sclerosis blog

I am a firm believer in going with the flow.

Like water……

Water can lie perfectly still in a puddle or crash against the shore.

As a tsunami it destroys all in its path.

Over time it carves canyons in mountains.

It sprinkles during a sun shower and batters you in a storm.

It can change from ice, to liquid water, to steam in a flash.

Water takes the path of least resistance.

Like flowing water, I refuse to stagnate.

I won’t always blog about the ‘woes of having multiple sclerosis’.

I refuse to define myself as ‘that girl with M.S.’

So in keeping with how I believe I should live my life, I will blog what is on my mind.

I will be mad .

I will be sad.

I may be estatic or full of self depreciating humor.

I will find the absurdities of everyday life and laugh at myself often.

I will strive to be content.

Welcome to – “I’m Just Living This M.S. Life….Staying Sane Since My Diagnosis With Multiple Sclerosis”

A special note to anyone who wields a Red Pen to correct grammar errors…..I write like I speak. If I followed all the ‘rules’ my writing wouldn’t feel like mine. Okay….lol…you’ve been warned. Read on if you dare.

Sprang, Sprung, Spring……My house Sprang a leak……My house Sprung a leak…..My house decided to Spring a leak

I know my house doesn’t actually ‘decide’ anything. It is an inanimate object. My house is 30 years old….exactly. I think house years are probably like dog years….each year is worth more time than a human year. It probably depends on how many kids have lived in it, colored on its walls, spilled on its carpets, slammed doors, dented its baseboards, and dirtied up its bathrooms. It probably also depends on how many pets have torn up its carpet, scratched up its wood floor, chewed on its walls, put their wet pet noses on its windows, and spread their dander & other (ahem…..gross stuff) throughout its rooms.

I think inanimate objects have personalities….just like people. I name my cars according to their personality. I had “old girl” for a 20 year old Mitsubishi, and I gave my Mazda the name of a fictional demon character from one of my favorite authors books. She is a beast…..my Mazda that is.

I like to think of my house as a being a grumpy old man. Worn out in some places, dry wall patches here and there, a few cracks in the walls, scratched windows, barely operable slider doors, and missing Soap & Toothbrush dishes…..thanks to my elbows (my funny bones were NOT happy).

As I see it, he (the house….lets go ahead and call him ‘Grumpy Old Man’) has the right to be pissy. I mean we raised 2 kids here. We’ve been here since they were 2 and 3 years old. Four dogs have lived within his walls…..3 are here now. There have been cats aplenty, a gerbil, some red belly frogs, and about 15 Beta fish.

Yeah…with all the dog barking, stinky children, kids yelling, messy rooms, burnt dinners, roof damage from hurricanes, and torn up carpet I’m surprised Grumpy Old Man didn’t spring a Bigger Leak sooner.

Well, I guess he’s finally had enough. We’ve gone and pushed him over the edge. About a week ago we started hearing a noise, similar to the “Ah they must have just flushed the other toilet” noise. Turns out…..No one was flushing…(well they were….or eeeeewwweee that would be gross) but no one was flushing when we were hearing that weird Swooshing noise.

Damn it, Damn it, Damn it !!! We have a leak. It is no where to be found. No water leaking onto the floors and no obvious wet spots on the walls or under the cabinets. That leaves the dreaded ‘Slab Leak’. Yup it is probably a leaky pipe in the house foundation/slab. I have a bad feeling that my water bill is going to hit the TRIPLE digits this month. LOVELY.

Well, try to stay cool and I hope all of your “Ah they must have just flushed the other toilet” noises……are truly flushes. 🙂