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.

Saffir Simpson Hurricane Wind Scale
Dorian from Space – from NASA
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. 🙂

really? Really?? Are You KIDDING ME ?

Uggh, I’m tired. M.S. is exhausting. Yeah, I mentioned that already didn’t I? It’s not just the physical and mental crap we put up with….within our own bodies. It is having to wade through comments, sometimes ridiculous, other times aggravating. Most of the comments are made by well meaning people…..more often than not they are unsolicited.

Because there are so many well meaning people that genuinely want to help, you learn to listen, nod, and say thank you I’ll look into that.

Every so often there is a gold nugget in there….like someone saw an article about stem-cell research and MS, or that a new DMD is being approved. Those are helpful nuggets.

There are some annoying and kind of ‘out there’ suggestions too.

Some of the whacked out comments I have heard are:

  • “but you look fine.” – so…exactly how is someone with M.S. supposed to look?
  • “you should get some more sleep” – really, I hadn’t thought of that…
  • “so, do you still have M.S.?” – Seriously?????
  • “you should do the paleo diet” – ugggggh
  • “I heard they found a cure.” – lol….really?
  • “you shouldn’t exercise because it will make your M.S. worse.” – uh no, I like my finisher medals
  • “you should go on disability” – uggh, and live on that little bit of money…I like having things and spoiling my dogs…
  • “it will be EASY to get social security / disability” – oh, okay…have you ever successfully received either for having M.S.

Then there are the whispers and stares you receive when having a Really Really Really bad M.S. day. There are some decent days where you are doing pretty good but some days you wish you would have stayed in bed. Maybe you are uncoordinated when you walk, drag one foot a bit too much, talk with a little slur. All the sudden people are whispering and looking down at you….imagining (with their small little uneducated minds) that you are drunk.

It also aggravates the he** out of me when people with M.S. that park in handicapped spots (legally), get berated for ‘not being handicapped’ just because they don’t look disabled.

I dare anyone of those idiots to perform an M.S. experiment. Go without sleep for 36 hours, put on some moderately heavy ankle and wrist weights. Wear them throughout the 36 hour experiment. Cook with them, drive with them, shower with them, walk with them, etc. etc. Make sure it is a hot day. Right about 94 degrees should do it. Now go to the grocery store around 2:00 pm and park at the back of the parking lot. Get out and do the shopping. By the time one of those idiots got to the milk aisle they would be rethinking that handicapped parking spot thing. That is what M.S. fatigue feels like, and we have it for WAAAAAAY more than 36 hours. We can look GORGEOUS, STRONG, NORMAL…..still have M.S. and all the shit that goes with it.

But on the Bright Side……I have quite a few good days and not too many really, really, really bad days. I haven’t gotten to the special parking space stage yet….and hopefully won’t for a long time.

Went to the Neurologist Today….

lol….the picture has nothing to do with my trip to the Neuro. I just like the picture. I took it before one of the half marathons I ran a few years back. It was a very nice, brisk day. The water was just, Pretty.

Today was the big day….the monthly visit to the Neurologist. Yes, MONTHLY. I don’t have to go every month because I am having a hard time with my M.S. No, there is another reason, but in an effort to not cause WAVES….I’m keeping my mouth shut. Suffice it to say, I take some of my medicine because I CHOOSE TO WORK AND BE A CONTRIBUTING MEMBER OF SOCIETY. ‘Nough said !!!

So, YAAAAAAAY…..no major change to my meds. There was a possibility that the disease modifying medication I’m taking would change. It was possible that the Betaseron was no longer working for me. The Neuro looked over my last few MRIs and decided that there wasn’t enough of a change to warrant a med switch. Thank goodness. Lord knows I don’t want to get used to any new side effects.

I did research new meds though. I decided that if I had to get off Betaseron I would push for Mayzent…..I think that is how it is spelled. It is brand new…as in approved this past March…(I think).

BUUUUUUT, it’s awesome that I don’t have to worry about that.

I did ask however, to change anti-depressants. I have been taking Bupropion for about 15 years. I am starting to feel like a Zombie. Not good. I asked if I could switch to something else.

My end goal is to get off the Bupropion and 1 other medication. I hope that in the next few months I am successful.

Thank goodness for the best Neuro I have had in many years. She is amazing. She listens and she doesn’t “pooh pooh” any concerns I have. She doesn’t think of me as a whiner….That’s just not me. “oh I hurt…I need pain meds….pout, pout, pout…please give me….Something”. That’s not how I operate. She knows I am not that type of person, that I am not going to mention a problem unless there is really an issue. Even then, I don’t believe that every pain or problem requires drugs. I’ve always believed that I’d rather know what is going on within my body. If I hurt, it is my body alerting me to a problem. I’d rather feel it, acknowledge it, and figure out how to work with it. Hopefully I will be successful and find a resolution to my pain or whatever issue I am having without any EXTRA medicine.

Of course I am not unreasonable. There are limits. Acute relapses require some type of steroid intervention. Acute relapses are caused by inflammation and steroids help stop inflammation. If you stop the inflammation, you slow the damage that is occurring during the relapse.

Trigeminal Neuralgia is another exception to the rule. I know first hand why that illness is called the Suicide Disease. It occurs usually on one side of your face. Brushing your teeth, a slight touch, a breeze, even breathing causes excruciating pain. I envision that illness as a monster sitting back laughing at our pain…..”Ha, Ha….the jokes on you. Not even narcotics fix this pain.” That is true. It is HORRIBLE. There are people who have that illness ALL the time. It is a disease unto itself. The normal treatment for it is to cauterize the trigeminal nerve in the face. It can cause facial paralysis, but with that much pain most people don’t give a SH**. Burn the nerves and fix it.

Luckily for us with MS we have some recourse. We know the damage may just be caused by the relapse. Once the steroids take effect, the pain usually subsides. During that steroid dose an Anti-Seizure medication can help deaden the pain. Not stop it….but deaden it a bit. I think seizures affect the nerves in a way that may be a little similar to MS…..or MS can mimic the way seizures affect the nerves. Nevertheless, for those with MS, there is normally a resolution in sight.

Yes, I had this once. I first felt it when I went to brush my teeth one morning. I touched my toothbrush to the teeth on the left side of my mouth and was shocked by so much pain that I almost fell. It was a shock that reverberated through what felt like the entire bone structure on that side of my face. Think of that tuning fork your Neuro sometimes does tests with. Now hook it up to a source of electricity, smack that tuning fork hard on the table, and press it firmly against your face near the junction of the jaw and cheek bone. YUP…can make you pass out.

My Neuro prescribed a seizure med & a course of dexamethasone. About a week later the pain was gone. Alas, so were a few handfuls of my hair…. 🙁 …. but I really had no choice.

Sooooo, I veered off course a little bit. I was talking about my decision to take medicine or not depending on the situation. I take a DMD of course…. because DUH…..I want to still be walking in another 10 years. I also mentioned an antidepressant. MS does weird things to your brain. I don’t know if an area of my brain that controls emotions like happiness, sadness, elation, or depression has been affected by MS. Is that area severely damaged by plaques??? I don’t know. Does the DMD help cause depression or am I just one of the thousands of people prone to depression? I’ll probably never know. What I do know, is that thinking about turning the steering wheel and careening over the side of the bridge you drive over 2 times a day, for the last 20 years, is a BAD, BAD, thing. Not suicidal mind you. Just very apathetic about it. Wondering “Huh……it’d be so easy to just turn the wheel and go right over the side…..” I never thought “Oh I hate life, I want to die….tomorrow I’m going to drive over the side of the bridge.” Just the apathetic…Huh, I wonder what it would be like?.

See, I’m not Rabidly against taking medicine. I have a realistic view about what I can handle on my own, and what I can’t. I’m lucky my Neuro understands my stance on taking or not taking medicines.

Anyway I am trying out Effexor…(I think that is what it is called) starting tomorrow. Hopefully it will work wonders and I will be able to stop taking those other 2 medications without any problems.

Cross your fingers for me……and here’s to hoping for an uneventful new day!!