L’ Hermittes and such

There are a ton of different things us MSer’s deal with.  One of our quirks regarding this illness is L’Hermittes phenomenon. This little gem is a vibration feeling when we put our chin to chest. Odd huh?  I think so too.  I’ve had it for years.  I mostly get it but not limited to, when I get a flare up. This little gift MS has given me is more annoying than anything.

When I first got it,  it drove me bonkers (not a far trip right?)  but now it’s more of an annoyance.  Something I rarely tell my dr. about. With MS the coating on our brain has holes (lesions) in it, leaving the nerves exposed which cause misfires of the nerves. Kind of like a frayed electrical chord. That’s also what makes our walking, speech, etc get squirrely.

I remember years ago, when newly dx’d I had a ton of flares. Some really bad and some just more of a pain in the ass. One such time I was getting a vibration in my crotch.  Yep in my crotch.  I was mortified!!!  At first I thought maybe a gynecological issue?  Then realized it was just my good friend MS saying Heyyyyy girl Im still here. It got to the point that I felt the need to talk to my neurologist Dr. Shumate about it.

Now picture it, I go in for my usual visit thinking I have to ask the dr. about this FML! Dr. Shumate comes in the room looking every bit of a dad or granddad. How the hell am I going to bring up the vibration in my crotch?

Well he does some of the normal things like make me walk, checks my hand/eye coordination etc.  I figure this is the perfect time to get this off my chest, so I blurt it out. Dr. Shumate I’ve been getting a vibration in my crotch. He looks at me like he’d never heard of such a thing. Needless to say I was very embarrassed. I loved that dr. every time I’d go to him and I had to take off my shoes so he could check the gait in my walking. This very prominent Dr.  would help me put on my shoes, and tie them for me like I was a little kid. I was crazy about him, he was by far the most fatherly dr. I had ever had the pleasure of seeing. I most definitely didn’t want him to think ill of me. He didn’t, I don’t think. We just chalked it up to one of my MS symptoms. You know the gift that keeps giving.

This little entry was just a snippet into the weird things an MSer can go through. Mind you not everyone has this and not everyone will get this but it happens.  This disease is different for everyone. By writing this I hope to make someone feel a little less crazy.  Shit happens and it really happens when you have this little gem called MS.

So I feel halfway human and am going to attempt the drive to the dentist. Later in the day is my appointment with the neurologist. I really don’t see much point in going but I go. Sorry if that’s TMI but the facts are the facts. So there ya have it.

Wishing everyone a very happy and warm Thursday!

Driving and MS

So today wound up ok. Nothing to write home about, but nothing to complain about either. Got to see the cup as half full.

Tomorrow I have two appointments one being the dentist, for a cleaning. The other is my neuro, Lance will take me to the neurologist.

I have to admit I’m a smidge worried about driving down town. It’s about 15 min from my house. I rarely drive any more, except brief trips to the store which is a rarity.

Back when I was working at the airport (now that was a drive). I drove to and fro every shift. One day I was heading in. I stopped at Dunkin Donuts to bring in a treat for my compadres. On the way my right leg started shaking. Shaking so bad I couldn’t keep my foot on the gas. Much like my hand tremor, my leg started flailing about.

I wound up pulling over, immediately calling dispatch to let them know I was having an issue. I could not be late. Anyone that knows me knows, I NEVER run late and I have a hell of a work ethic. I call and get one of people I’d be relieving on the phone, then my supervisor (one of the nicest people I’ve ever met) I let her know what was going on.

Next thing I know the Chief and assistant chief are coming to my rescue. I told them no need as I had Lance on his way to take me to the hospital. They wouldn’t hear of it. They came and sat with me until Lance got there. They also drove my car to the hospital so it wasn’t left on the side of the road. Talk about good people, that meant so much to me.

After that incident I started using cruise control, as not to tire out my leg while driving. Then I started noticing my depth perception was off. Cars was moving far away from me. I realized then that I was making other drivers nervous.

I do have to say there are times when I do drive short distances and feel pretty confident in my driving. Then there are times when I’m like oh helllll no, today isn’t the day.

With that being said, my question is how do you know? How do you know when it’s time to hang up the keys? I guess asking that question should be answer enough.

I’ll decide in the morning. I do love a good teeth cleaning. So I’ll see how I feel about driving when the time comes. If anything I could always cancel.

I remember years ago when I worked at the P.D we had several calls about a drunk driver driving on the wrong side of the road, driving into ditches etc. I got the direction of travel, vehicle description and dispatched the call.

Officers got out with her, I ran all of her info, tag, license etc. . She came back clean. No warrants, no suspended license for drunk driving. They cut her loose. Meanwhile I’m in dispatch like wtf?

The Sgt came back asked me about different meds ( she knew I’d had MS for a while) I told her I recognized one or two of the meds but there are so many prescribed and I’m no expert. She said the lady driver had MS and was on new medication. They had a family member come and help her get where she was going.

I remember thinking that woman was irresponsible and selfish for driving under those conditions. Now that I find myself in that situation I see her side. It’s hard giving up what little independence you have.

So I’m going to feel it out tomorrow. I’ll let you all know how it goes. Say a prayer and wish me luck.

Feeling like a G

I start my entry with “Feeling like a G”. As you all know yesterday was horrible, my pain level was through the roof! I sat around cranky and mad at the world, in my robe with blankets on. You can picture it, hair up in the crazy side ponytail, all I was lacking was a smoke and a cheap beer in hand to complete the look.

I got through it! It wasn’t pretty ,but I got through it. The hubby babied me and I got through. It started with severe nerve pain in my legs from the cold, then it escalated to Trigeminal Neuralgia. It’s a feeling that is very hard to describe. I guess I can liken it to being tased. No, surprisingly enough I’ve never been teased, but I can imagine it’s a lot like that. It’s an electrical sensation in my face. Like someone is tasing me on my cheek. By the time I finally went to bed it was effecting my eye. I had pain just moving my left eye around in my head. The pain was making it tear up. Between that and my skin feeling like it was on fire I was not a happy camper. Fun right?

With all that being said I woke up without this pain. I don’t feel great but I don’t have near the severe nerve pain I had yesterday. So I’m feeling like a G a gangsta of sorts. Nerve pain brought the fight and I kicked its ass!!!!

I hadn’t had TN in years needless to say waking up without it made me a happy gal. So on with my day. Lance fed and walked the dogs. Crazy Daisy is still a lunatic and thats ok. She reminds me of myself. She’s tall and brown just like me, and she has a very willful attitude. If she doesn’t want to do something she’s damn sure not going to do it, much like myself. That pup is truly my spirit animal, and will make a hell of a service dog one day. Hopefully before she kills me.

So the day started good. I woke with limited pain, checked social media. I’m on a ton of MS support groups, so I’m laying in bed looking through the different posts and I come across a young lady that’s a newbie. I friend her, all newbies should have a friend that been around the MS block. It helps to have someone that actually gets it. After all it’s a scary time in your life and support is key to dealing with such a blow. I got to talking with her and It brought back a flood of memories. Some good some bad. I remember vividly when I was first dx’d my whole right side went dead. I looked like a stroke victim. I thank God my family was there to keep me sane (or at least partly) I rehabbed through it and you can barely tell I even went through it.

With the exception of my wonk eye, that was from Bell’s Palsy. I read somewhere it’s a precursor to MS, not sure if that’s true. There are a bunch off people that experience Bells Palsy that never get dxd with MS. My point being I went from having my hubby at the time (Bob) cutting my food to being a productive member of society and working until here recently. My last flare kicked my ass pretty damn good. It left me unable to work, I nap frequently. No, not because I’m lazy, but because I’m bone tired. You won’t get it unless you got it. Yep things have changed drastically but I’m handling it like a G!

I almost forgot to tell you all I had an unassisted BM. YAY team poopage!!!!! Now maybe I can take down my minimal Christmas decorations and do a little something in between naps. Today will be a good day!!!23659202_10154845021651945_3021128585244029344_n

IBS-Tomorrow is another day

It started out rather rough and it didn’t get too much better. I really can’t complain for as crappy as I felt, my hubby did his level best to make me feel better. For that I’m incredibly thankful.

He tended the dogs all day, as I lay on the couch covered up. He cooked, cleaned up etc. I was trying desperately to get out of my funk. Didn’t happen. As I lay there I think.

I think about how trying it must be dealing with someone with a chronic illness. I mean I know I can be quite a handful on a good day ,much less a bad day.

In my defense I can be a character of sorts when I’m feeling human. Today wasn’t one of those days, but tomorrow is a new day and I’ll do my level best to turn my frown upside down. Keep it funny folks.

Irritable Bitch Syndrome-the other IBS

Irritable Bitch Syndrome-The other IBS

Today it was 27 degrees in Panama City Florida. What does this do to my MS you ask? It makes me suffer with IBS. I have IBS (irritable bitch syndrome) when I’m in severe pain. Well I woke like every other day to my pups alerting that they NEED to be fed, pooped and peed. The difference today was that I could barely move. Luckily my DH took care of the pups. He’s a Godsend!

Unbearable pain can really bring out the monster in me. I tend to snap at everyone when this happens. Luckily my family and bestie understand. Most people with MS get heat sensitivity (which the dr’s warn you about). Some of us lucky folks also get cold intolerance. I do much better in the heat than I do in the cold. With cold brings tremors to where it looks like my right hand has a mind of its own, and is wanting to party. It dances around like it’s drunk. I’ve had people look at me oddly when this happens, which makes me chuckle or get annoyed. It depends on my mood for the day. Today would be an IBS day, so people probably should steer clear.

Last summer I had this (tremor) happen in the frozen food aisle of Publix. I admit I got a little embarrassed, but got over it. The thing is I look healthy. I’m in fairly good shape, 9 out of 10 times I have my hair done and make up on and dress pretty damn snazzy. So I don’t “look” sick. With that people either think I’m drunk (because I stumble) or am on something or just crazy (I am a little lol).

For some unknown reason dr’s don’t seem to take note of cold sensitivity regarding MS. It’s a real thing, I promise you. My body hurts so bad its hard to have clothes on because my skin is on fire!!!! But it’s freezing, so it’s a must. Don’t make me even go on about spasms (it’s mind numbing) it’s like I have Charlie horses tightening throughout my body over and over.

The day is not a total loss though, my son David got me a gift certificate for the tanning bed near my house. So he took me tanning. I’ve noticed the tanning bed actually helps with the cold intolerance and spasms. I really appreciate that boy. He and his brother really look out for their old mimsy. While we’re on the way home from the tanning bed my right hand starts doing it’s dance. David see’s this and asks are you dancing? I died laughing and said no sonny boy it’s a tremor. In his defense I have been known to bust a move in the car a time or two.

So that’s how the day is going for this gal. But tomorrow is another day filled with possibilities and hopefully heat. I can’t wait for Spring!!!!!

The Poop Chronicles 12/31/17

I woke promptly at 6:30 Hamm was rustling around in his kennel, acting like he’s starving. I get up along with Lance ( he was going to do the deed for me). He’s a good man, definitely steps up to the plate when I’m not up to par. But today and yesterday I had the energy to feed my pups. All my pups serve a purpose. Hammbone Jenkins III (there wasn’t a I or II the kids named him) aka Hamm ( a mutt, I believe Rottie/pointer mix) is the guard dog. He would definitely bite if someone broke in. Mr. Wiggles (Olde English)is the 10/40 (back up) If Hamm gets upset, Wiggles is ready to come to his aid. Daisy Mae (my GSD) is my service dog. She still needs a boatload of training but I think she will work out well. Her and I have an amazing connection. This dog has sold me on GSD’s she is absolutely the smartest dog I’ve ever owned. Sampson (my American bulldog) he’s just a cuddle bug. I do think he’ll wind up being the guard dog when Hamm passes. He gives it hell when people are walking by but is still a pup and unsure of himself.

So I feed and walk them. SUCCESS they all poop and peed. I’m still awaiting the arrival of my poop aka mine and Lance’s baby. I drink my coffee, I feel a rumbling in my belly. Could it be? Is it finally time to push? I run to the bathroom. SUCCESS! It was beautiful! I did it and all on my own. No pain, no having to call Lance into the bathroom to help me birth this turd. Now I can go on with my day not feeling like I’m 10 months preggers. If this is how the New Year is going to start I’m all in!

I think back on the year behind and think about how blessed and lucky I am. I have so many things to be grateful for. Wonderful sons, a loving husband, a great friend, because yes I am down to one. My bestie Jan. She has been a constant in my life since 2006. I started working with her at the P.D.

I admit she rubbed me the wrong way at first. She was my trainer and who likes their trainer? I found her a bit abrasive at first. Then came to love her abrasive side. She’s a shoot from the hip kinda gal. Much like myself she is misunderstood because she shoots from the hip. I’ve come to love her and cherish her friendship. She’s been there through thick and thin. Saw me through the passing of Bob and then through a myriad of boyfriends before finding Lance. She’s absolutely seen me at my worst. Drinking too much and down in the dumps. Did she ever judge? Not that I’m aware of. I think she finds me entertaining. I am quite the squirrel at times, as you’ll see.

When we dispatched I’d walk into dispatch and tell her things like it’s going to be a shit day I hadn’t pooped in days, or I had a bowel movement I’m ready to conquer the world! I also used to joke about going out back to smoke a dube, I wasn’t really going to smoke pot in back of the P.D. I was going to smoke a cigarette. But always said it to get a chuckle out of her. I do admit when I would say it around supervisors (the Captain etc) I did it for shock value. I really enjoy seeing what people will say or do when I come out with outlandish things. It’s kind of like let’s throw this out there and see what happens. As you’ll see I do this often with Lance and the kids. Got to keep things poppin’.

So me and my sweetie are going to get this New Years Eve started. Shower and then decide what we may or may not do on this New Years Eve. It all depends on energy level. Sometimes I can go and do and sometimes I Peter out. But I pooped today so it’s off to a good start.26055689_10154949747681945_402990954911850032_n

Thoughts of Suicide 12/31/2017

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So my Sonny boy David came home after a long shift at work. He works at the Bay, a very nice restaurant located on Santa Rosa beach. They cater to the more affluent in the area. So sweet Days (as I like to call him) comes in. Lance and I were in bed attempting to sleep. This never works as planned as I toss and turn for a while. I hear him come in and am quick to my feet to visit with him. Trying to get as much David time as I can.

So we say hi, hug etc. I sit at the breakfast bar and ask him how his day went. He says “Mom, a guy I work with killed himself” I ask how old? He says I’m not sure late 20’s early 30’s I say damn that is terribly sad, as I think how devastated his poor family is over this loss the day before New Years Eve. David says” Well you know holidays sometimes get the better of people”. I tell him I hope he never feels that alone in life because he always has us, and we need him.

Then I thought about it, several months ago I was taking a medication I’ll just call it A. A disease modifying drug since this recent severe flare up I was having. The medication had me very out of sorts and just miserable about the person Ive become. I was sleeping constantly and barely strong enough to get from the couch to the bathroom. Life as I knew it was FUCKED!

During this time I became despondent. I woke up every morning wondering what fresh hell was going to take place. The pain was mind numbing. Dr’s push pain meds and theres only so much of that shit you can take before the body becomes tolerant and BOOM you wake up a full blown addict. I saw what it did to my sister’s life and refuse to go down that rabbit hole.

At this point 46, unable to work because I’m in severe pain and high from pain meds. I was starting to feel like a burden on my family. I could barely get out of bed. What use was I to any of them? Ive always been the doer. I worked, cleaned house, cooked etc. Now I was nothing but a lump on the couch.

I admit I was contemplating how long I could go on like this? I mean how long do people lay there doing nothing and bringing nothing to the table before checking out?

I thought long and hard how? The only thing I could think would be to just O.D, no pain etc. Just drift off to sleep and that would be it. Then I thought about my religious background. I was raised Pentecostal. We just don’t do suicide unless we want an eternity in hell. That and Ive always been of the belief that God calls us home when our job here was done. I’ve believed that since my former husband Bob passed of cancer. When he was sick he would say I just need to stay around until the boys are grown. While we would have given anything to have him around longer, his job was done and he wound up passing at home surrounded by all of us. When I go I would like the same send off. So with all of this in my head I think my job isn’t done here. I’m here for a reason. Lance and my boys need me, somebody needs me. I have to keep fighting to make my days count.

At this point I realize that I need to stop being ON. I need to scale it back and enjoy whatever I have left. When I do go, I don’t want to be remembered for being a high strung bitch. I want people to think of me and say wow what a dynamic lady.

I had a friend of mine from years ago (that Bob and I worked with)  Jerry tell me that I was very strong and an inspiration to people. Little did he know I needed to hear that, just at that moment.

So if I’m here for Lance, the boys, or maybe someone reading this blog Im doing something. I’m staying active. Not in the same sense I was, but I’m still of service to people around me.

How selfish would I be to take the easy way out and commit suicide when someone needs me? The boys and Lance give me purpose and I got something to say. So here I am still plugging along waiting on a cure.