Happy Endings

Well last night ended with spasms upon spasms, as well as nerve pain. Remember it’s cold and I have cold intolerance. The past few days have been pretty busy (which is not my normal). Folks don’t really understand that any upset of my apple cart comes with consequences. Well last night was a doozy.  I went to bed around 10 pm. Pretty average time to go to bed right? Well that didn’t last long, I was up at 11:30 then 2:30 then again at 5:00 am.  At that point I say fuck it. I’m up the nerve pain and spasms got the better of me last night. That tricky bitch (MS) was at it again.  My legs were on fire.

So my day starts, I get up hating life at this point because I’m exhausted. I think to myself, someone might get an ass chewing today.  I try to play it cool when my hubby talks to me. After all who wants to wake up to an irritable bitch. Picture it, I have my crazy side ponytail going on, my big fluffy robe and my signature cheetah slippers. I can be found wearing these any time I’m home.

So off to the dogs bedroom, because yes they have their own bedroom. Everyone is happy to see momma.  It’s great, it doesn’t matter how much I’m suffering with IBS (Irritable Bitch Syndrome) they’re always happy to see me. I get to filling food bowls. Hamm first, he’s my fat ass and always starving. Hamm is getting old so I humor him and feed him first. Then wiggles (who is also a senior dog) he can be found facing the wall wagging his stump because he’s going blind. This always gives me a chuckle. Then crazy Daisy and Sampson. Everyone’s fed and the DH walks them. He’s a saint on days like today.

I’m trying to hide my IBS but am answering his questions a little short because I’m cranky AF! He see’s through my facade and asks why are you being so terse?  Meanwhile in my head I’m pretending rather well not to be an asshole. The jig is up, my IBS is clearly visible. I try to change my piss poor attitude but it’s kind of hard when you’re working on not so much sleep.

A lot of us MSer’s suffer with severe fatigue, some of it being caused by lack of sleep due to pain throughout the night.  So I think to myself this day will turn around. Always the optimist, I head to the bathroom to attempt a BM(bowel movement) after all yesterday I went to the bathroom fine, no laxatives or anything. You’d have never known I had an issue in that area. But today was NO happy ending for this girl. As I’m sitting there on the can waiting, I thought about the Seinfeld episode with the soup Nazi, I thought about him screaming NO POOP FOR YOU vs. NO SOUP FOR YOU!!!!

Yeah these are some of the things that run through my head. It’s ok though it keeps me chuckling. So today is starting as  a no poop for you kind of day for me, but it’s bound to get better. I hope…….

Love my duckies

Well my youngest Jake came over last night as well as this morning. He was sick as crap.

So I insist he go to the dr. My GP is out of town til Monday. So off to the walk in clinic we go.

We get here and I tell them he either has the flu or bronchitis and needs to be seen. If you’ve ever been to a walk in clinic you know they’re not the most pleasant folks.

They called Jake to the reception window, he goes where he’s called, the receptionist asks him for his ins card. He says I just emailed it like the other clerk told him to do (his ins is under his dad with the plumbers union in NY). She gets a tone in her voice and says she wasn’t told he had emailed it. Well Let me tell ya, I’m not going to have some jerk getting nasty with my sick son. I spring to my feet ( as best I could) and lean into the window and say in a very nasty tone ” we emailed it” lips tight and almost daring her to get that tone with me. I’m not above pulling her through the window and jerking a knot in her ass. She smiles sweetly and says ok.

Dr comes in, checks Jake says it sounds like it’s probably bacterial. He’s going to prescribe a Z pack and cough meds. I say how about a shot of antibiotics ( to get it in his system quicker) and an inhaler since he is asthmatic and was wheezing yesterday. We agreed on the course of treatment. The dr was very nice and accommodating, unlike the chick in the front.

I do admit I’m scared to death I’m going to catch his funk. But once a mommy always a mommy and I’m willing to take the hit to make sure my sonny boy is taken care of. These boys keep me hoppin.

Pissing and other fun stuff

So I head to my dentist a bit nervous, but hey you don’t know if you don’t try, right?   I made it!  I get out of the car and I have to pee because it’s still cold out. I rush into the dr’s office and feel a warm almost burning sensation on my legs. Did I piss myself??  I won’t say it’s never happened MS is a tricky bitch and likes to pull pranks. I have a hard time with releasing all my urine on occasion, I also get spasms of the urethra. I just hope I don’t ever get to the point I have to self catheter myself. But if it happens I’ll deal.

I stand at the reception window and look down. Can’t see anything, but I better make sure. I ask the receptionist if I could use the bathroom. She directs me down the hall, me looking down to see if there’s any evidence. I don’t see anything, but I better check. Luckily I didn’t have an accident. I can’t say this never happened to me in the past. It did. It’s happened at home on a couple of occasions, but not outside.  This is another one of the things dr’s don’t readily tell you about. Like hey, you may be just walking around your house and get a sensation , that sensation will be urine running down you leg. Or as in my case  yesterday, you may get a sensation and think you’re pissed yourself, when you hadn’t.  There go those exposed nerves (MS) being a tricky bitch again.

This is one of the reasons I tell newbie MSer’s to do their research. Get knowledgeable and know what may happen, so you’re prepared. I also suggest that newbies be their own patient advocate. Don’t just swallow what a dr tells you. Question it and then question it again. I can’t tell you how reliable gut instinct is. I’ve saved my own ass time and time again, going with my gut.  If it doesn’t feel right it probably isn’t what you should be doing.

Well my dental visit went well, I didn’t pee myself and I got an A+ for the care of my teeth. YAY!!! Go team pearly whites!

Later in the day I went to my neurologist appointment. Nothing new there, I still got MS and all that jazz. I have to admit it feels like a futile point to even go. He’s not going to tell me anything new like I’ve been cured etc. So why bother? Sorry I’m a bit negative about the whole process, it feels like a waste of time and money.  Money I don’t have to waste to be told what I already know. I don’t want to sound like a smart Alex, but there have been only a few dr’s I’ve dealt with that know more about the disease than I do. After all I’m the one with it for almost 14 yrs. I constantly do my research and stay ahead of the ball. I always stay on top of the new DMD’s (disease modifying drugs) etc.

So there ya have it, my day was a success. Drove to and fro to my dental appointment without major incident. I’m proud! I know it doesn’t seem like much, but any and all accomplishments should be celebrated. My celebration ended with Pizza from my fave pizza joint.

This blog is intended to help people understand how MS can go. Not everyone will experience these things, so keep it positive and try not to worry if you’re newly diagnosed. I don’t share half of these things with anyone. Not family and not friends, so to them they just see me chipper and made up, looking like a G. They always say fake it till you make it. So here I am faking it. I keep it positive because if you don’t you’ll have a miserable life. Every day is a good day. The days that aren’t I alway’s say tomorrow is a new day filled with endless possibilities.

BTW I do not own the copyrights to picture posted.

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.