Blogging and personal info

So yesterday was a wash. The pain subsided, I took a shower and ran out of spoons, I only have so many after all. (Google the spoon theory if you don’t understand that term). Showered and petered out quickly. I was out of breath, dizzy and weak.

I didn’t have the strength to go to the store with my DH. It’s ok he’s a good egg and didn’t mind going alone. So the day was a loss. I did nothing. Not out of laziness but because of pure fatigue and vertigo.

I wrote another blog about cheating on a spouse that suffers with a chronic illness. I ask my hubby to read it. I ask what he thought he say’s “it’s good. I just think you put a lot of personal information in your blogs”.

Then he say’s “ this last blog may lead people to think I’m cheating on you”. I laughed and said “honey anyone that knows me, knows if that was about us you’d be dead and I’d be in jail and unable to write my blog.” I went on to say “ this is a serious thing that people with chronic illness worry about and actually go through”.

The whole reason for this blog is to touch on the things a lot of people go through and no one talks about. I’ve long stopped worrying about popular opinion. I’m willing to say what everyone else is thinking, but afraid to say. I put a lot of personal info as well as concerns we MSer’s worry about into this blog, I do this so other MSer’s realize they’re not alone in what they go through.

Today’s another day and is starting out much better. I’m thankful, I took the time yesterday to recharge and it helped. Life is good even with a chronic illness. Happy Sunday folks hope you enjoyed today’s entry. Feel free to share any of my blogs.

Lovers….

As my day progressed my pain lessened. Took all my meds as well as my cbd oil etc. So the hubby and I chill on the couch. Snuggled up like bugs in a rug. We’re going to watch Netflix and chill. Young people use this term as a slang term for sex. Lance and I literally watch Netflix and chill out.

We decide on a movie. The name of the movie we pick is Lovers with Debra Winger and some guy I don’t recognize. It’s a cautionary tale of two older people that are stepping out on their spouse (hence the title Lovers).

This brings me to a question. Should us MSers expect this kind of thing? I mean it is hard having a spouse with limitations, but marriage should be until death do you part. Not well my partner is sick so I’m going to find someone else. I see it all the time in the groups I’m in. It breaks my heart every time.

I can understand people growing apart, but just totally giving up on your spouse because they’re sick? In my opinion thats unacceptable. I truly don’t know how someone can deal with that without becoming violent. I promise there would be an ass kickin’ a coming (said in my best Southern accent). I may be a Northerner but I can do a hell of a good Southern accent, as well as whip an ass like there’s no tomorrow.

I think about my own circumstances. No Lance didn’t sign up for this, but I’m all about full disclosure and I made him very aware of how things can go. The only thing I do know is this is a scary topic for people with a chronic illness. But it does happen A LOT.

Us MSers have a lot to think about. Our failing health as well as being a burden on our loved ones and them becoming disinterested. I hope my hubby never feels the need to, but if he ever does it would be his loss. I may be sick but I’m still quite a catch and do bring a lot to the table.

To my friends that follow this no, I don’t think Lance is stepping out. This is just a trend I see on the MS groups I follow. So let all of us follow the thinking that our worth isn’t effected due to our illness. We’re strong mentally if not physically and we DO bring something to the table besides illness.

I finish this blog post with saying whatever we do let’s not let our illness over shadow our self worth

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.