Oh NO, ANOTHER POST about Tysabri

Actually, it’s not really about Tysabri, but I do want to talk about it for a minute.  ( Which we all know will be 700 words about Tysabri)….Well maybe not, I’m still “precoffee”.  Anyway, I digress…Yesterday and this morning I received numerous texts and messages wishing me well and seeing if I was ok because it was Tysabri infusion day, and to be honest the drug does “kick my ass” FOR A DAY.  Only for a day.  Before I started it, MS was kicking my ass EVERY DAY!  Ok, I was letting MS kick my ass everyday, either way it is only for ONE DAY.

I slept all day yesterday.  (Well my brain did.)  There is evidence that my body attempted to function because their is a full ashtray by the couch where my cross- stitch sits.  (Somehow more of that is completed too?!!?)  My dogs, aren’t completely up my ass so I must have fed them too… Einstein ate (Evidence of an empty bag of CHEEZITS is on the floor next to his desk)….smh

My tummy isn’t rumbling, so I must have handled that too.  THAT is actually the reason I am writing this morning.  There are so many worse things in the world.  I am not hungry, I have a roof over my head, my kids are healthy, and I am fortunate enough to still have both of my parents in my life.  The point is THINGS COULD BE ALOT WORSE.  Losing ONE DAY a month to treating MS is so much better than the every other night shot, followed by a day of fever, chills, and vomiting.  I’ve GOT this!  (and apparently a day of catch up)….lol

no coffeeI have been waiting for coffee the entire time I rambled this only to find that the coffee machine (ok ok Espresso machine) is broken.  OMG IT WONT TURN ON!!!! No pretty blue lights (YES IT IS PLUGGED IN)  The button won’t even push…..GRRRRRRR… OMG, Now I do need help!!!!!!  DOES ANYONE DELIVER?!??!back up coffee

HEH!  Anyone that knows me in real life KNOWS I have a back up plan, and a back up coffee maker, and a backup pack of cigarettes…and and and…. But Seriously, My Espresso machine is broken and I do have to play “catch up” from yesterday while attempting to function on 1/4 of my daily caffeine intake. 😦

I hope everyone has a fantastic day today and a great weekend 🙂

If you happen to have any free time, please send or deliver coffee.  OR… stop by My coffee pinterest board and add your favorite pin or post it on my Facebook page?  Have a Great weekend everyone! 🙂  See you next week!

Photo credit: http://www.capejava.com/

 

 

 

 

“K” blog…challenge accepted

At 5:03 my time, my best friend sent me the above meme.  Did I mention he was my best friend?   Ok so this is the whole message “Saw this today and had to laugh. Do you remember back many many years ago. I used to put “K” for okay and you told me how much that bothered you. So, from then on I put “Okay” instead. Now you put “K” and I still use “Okay” – roll reversal – lol – the fun and crazy times we have had together!! (hug)”  My first thought is HELL NO I DON’T, although I did ask him “Really I do?”…. he said “yes you do….lol”…. after thinking for about 1/2 a second, I called BUNK….. Texting just “K” drives me bad shit crazy, no way would I do that to him.

Einstein looked over from his computer, read what my friend had written and said, “Yes you do”…Again BULLSHIT!!!! So I challenged both of them to prove it…. find one fricking time I have ever just replied with a “K”.  As of the time I started writing this, Gary went back to through our skype chat records all the way back to MARCH of this year and could not find one example where I had just said “K”.  Einstein scrolled through our text messages back til July and found a day that I had said “K” but it was intentional.  More about that later though.  I told them both that I would get a blog post out before they could provide me with proof of their accusations so that is what I am attempting….and the race is on…..

The whole point is that I would write them both a message either on skype or text and they would simply reply “K”.  My message would be so long with emotions and all that shit like I had a really bad day and I need to talk tonight, or I don’t feel like making dinner tonight because I got MS is Winning today and I NEEDED to hear “tomorrow is a new day, or you’ve got this”…which I assumed they both should know since I have absolutely no self confidence.  Ok, Ok, I should have been more clear about what I needed…hindsight and all that, but either way both heard my opinion on using “K” on numerous occasions.  My opinion on the use of “K” is that it is a GREAT BIG FUCK YOU.  Followed by I don’t have time for you etc etc.  So I know for a FACT, I wouldn’t say that.

In both of their defenses, they have stopped doing it, and I really appreciate them respecting my feelings, however irrational they are.  Over the years, I have also realized that it doesn’t really mean fuck you, or I don’t have time for you.  They were at least taking time to acknowledge what I had said.  Gary, being the bestest friend in the whole world ever sent that to me tonight to let me know he is recovering from his recent surgeries.  Einstein jumped in…well I’m not really sure why he jumped in, maybe just to prove me wrong.  He went back to July and showed me an example of when I had said, “K”.  (I even said it six times in one conversation.)  Because I keep things real, I will include that…but let me also add that we were talking about sex and as I said “K” to me meant FUCK YOU, so it was playful and flirtatious and I don’t really think it counts, but it is there….

How do you all feel when someone texts you “K”?  Especially when you have asked a question or spilled your heart?  I’m just curious.  I have my IV tomorrow and have no energy to do anything other than sit here at the computer or watch tv until my daughter comes by.

I am hitting publish now, and neither of them have provided proof…. so “K” you both 😛

 

 

Trying to find “Joy” (inside joke)

We have a 10 year plus old whirlpool tub that has a “hand held jet” to help you reach the spots you can’t position yourself in front of to feel the pulse.  Anyway the massaging part popped off, and Einstein won’t let me glue it back on, BUT he said I could buy a replacement for his tub,….. if I could find one.

That was my agenda for the day.  (Oh and a test video chat with zoom today at 12:30 p.m.) Thankfully, I had the company of an awesome friend to accompany me along on my errands.  To keep her identity personal we will call her “Joy” for the time being. So my friend “Joy” showed up (a little late as usual), but that’s ok, because I already new it was going to be a multi store experience and company was good…. NOTHING IS EVER SIMPLE!!!

We left for the mall a little before 9.  Who knew they didn’t open until 10?  😦  That’s ok, we could walk the mall to fit in my mile walk today.  We did!… It was actually kind of relaxing until a 90 year old man flew by us without so much as a hair out of place.  Yes I instantly felt 100 years old.  Can you be going through menopause at 44?... I just snarled at him (under my breath) and kept plugging and sweating along.

Finally 10 o’clock rolled around, and Sears opened.  I’m thinking Sears has everything, they will be able to help (when I was a kid, you always called Sears).  We had to walk through the entire store before we were finally directed to the “expert”. ( Over 13 hills, through mountains and a river even)  But the “expert” was no expert.  I will share his name though.  It is Don.  Don the NON expert.  But that’s okay….. Don had an expert to send us to.  ON THE OTHER SIDE OF TOWN ( you know the part that you never go into after dark, let alone daylight?  YEP THAT PART OF TOWN)

“Joy” decided that she was up for the adventure so we headed out to find the new god of hand held spa jets.….Let me just say…it was a complete and utter DEAD END.  They didn’t carry parts for “bathtub type whirlpools”  at least I think that’s what they said.  Either way no help and no redirection…. Oh well tomorrow’s a new day and I still have to stock up at Sam’s club before my membership expires next month.  (honestly I had to pee and didn’t feel comfortable dropping my pants there)

“Joy” and I quickly (but of course safely, following all appropriate speed limit laws, etc) headed out the door and back to the first side of town.  YAH!…Sam’s club was simple.  Einstein had given me his credit card to pick up $200.00 in alcohol (for the imaginary new year’s party that we are FINALLY going to have).  I ran into some dear friends that I went to high school with, did the FAST “tell me all about your life in under 15 minutes”, add me on Facebook ( oh shit I have a new one), and let’s get together after the holidays thing.  FTR I really hope this happens!!!  I spent $193.18 and even got some granola and bananas in the process.  YAH under budget!!!! AND most importantly I made it to the bathroom in time….BONUS YAH!!!

I had run out of coffee at this point so I offered to buy “Joy” lunch for letting me DRAG her along.  She “milked” my guilt, and said that she wanted to go to a very expensive hibachi grill in the area, I thought about it for about 1/2 a second ( I did have Einstein’s credit card), and then took her to McDonald’s.  On the way back to my house, I did pull in the parking lot of the famous hibachi grill so she could eat her lunch there.  So I did try….

Clock check…. holy shit it’s 12:00, MAYBE we could pop in Great Escape very quickly to see if they could help us.  (It takes me 4 hours to walk a mile though remember?), but we could try…. besides I had to pee AGAIN, so off we went.  As I did the “I HAVE TO FRICKING PEE NOW” potty dance I tossed the bag to the guys behind the counter… (Maybe I even threw it?)…no no I’m sure I tossed it gently as I nearly screamed, “I have to pee, can you look at that, and where’s the BATHROOM?!?!?!?”

I won’t bore you with those details, but yah mission accomplished….( well the making it to the bathroom part.)  When we went back to the counter 4 guys were standing there just kind of staring at us.  ( probably still in shock at my entrance), but they hadn’t even looked in the bag.  When I asked if they could help us, they said, “Well what is it?”  OMG are you fricking kidding me?!?!?  Seriously hasn’t anyone seen a handheld whirlpool tub jet?!?!? (I posted the picture above if you haven’t)  Feeling my frustration, my friend “Joy” blurted out, “IT’S A VIBRATOR”.  Well THAT got their attention.  No help from them, but definitely their attention….and then we were out of time.

I raced ( again very safely, following all posted speed limits) home with 5 minutes to spare for my video call.  (Crap did I shower this morning?!?!?) No matter, it was happening anyway.

12:30pm.  ZOOM is awesome!  Similar to skype but I think more advanced.  My call was with a fellow blogger offering advice on setting up your blog for monetizing and increasing traffic to your site. (I’m not ready for that at this point, but maybe sometime in the future)  Either way she was very helpful and knowledge, and we had a great “chat”.  I’m waiting for her to let me know if I can use her link in my post, so I will add it tomorrow if she allows me too. (damn time difference and personal lives)  She is very helpful and has set up a fb group on blogging too.  UPDATE… I talked to her, and she said “cool”  so here is her link, if you want to join the group or connect.  Sophie is awesome!   Bloggers going pro facebook group .

As for my hand held whirlpool tub jet, I am at a dead end for the night.  I have no model or serial number, just a broken jet.  BUT, I had a fantastic, and somewhat productive day!! “Joy” listened to me whine about my empty nest syndrome, and every other adhd topic that came to mind….maybe I do owe her a REAL “very expensive hibachi grill in the area” for lunch after all ?!?!  Maybe a dinner too?

If I didn’t bore you, or put you to sleep and you are still reading….THANK YOU!!!  I needed this kind of day with this kind of friend ( the one who you aren’t sure who is the bad influence) to remind me that I am more than a mother, more than ms, and it’s ok to have some down days.  (ty to those that commented on my post the other night)

Okay no cliche’s tonight.  Have a wonderful evening everyone! I hope I didn’t “overshare”.  ( I am working on a “disclaimer” for the website, but I don’t think “I have no filter” is enough)  In fact, since the 4th person has recommended that I made a video or video blog, I am thinking of giving that a try in the upcoming weeks… so much to learn…..

Please tell me “It’s OK to be NOT OKAY”

I’m going through something right now that I find very hard to explain, and I don’t understand why it’s happening to me.  So I’m telling myself that it is OK to not be “OK” while I work on figuring it out.  I don’t know if there is a clinical term for it, and to be honest I don’t want another label.  I just really want it to be OK.

Over the last few months, I have developed a few “obsessions” for lack of a better word, and I am overthinking everything.

I NEED the people in my life (this seems to include EVERYONE that has shown me ANY form of kindness) to know that I appreciate them.

Some examples:

I have a very difficult time walking.  Someone takes the time to not only hold the door for me, but waits for me to drag myself through it.  I want to kiss them, hug them, buy them coffee to THANK THEM for their kindness.  (I usually only smile and say thank you for fear that they will call the white coats to have me committed if I showed any more gratitude.)

The other day I read a blog post that I thought was very motivational and included some great advice for me.  I wanted to share it with everyone, because maybe it was the “magic answer”.  Then I got worried that she would think I was “stealing her stuff” if I shared it, so I had to message her and ask if it was ok and how to share it without stealing her words.  I worry that she thinks I am the biggest nut case out there, because I’m sure I over-thanked her for her kindness.

Another blogger shared some tips with me about backing up my wordpress site, and I wanted to “repay” the kindness so I offered to like her blog, instagram, twitter, and anything else I could do to say thank you and maybe drive some traffic her way.  Then I worried, I must appear like a stalker and felt the need to explain myself.

Yes, I realize that logically a simple “thank you” should be enough, but for some reason right now it isn’t.

“They” say the first step in dealing with a problem, is realizing that you have a problem.  I get it, ok, so what exactly is the problem.  I’m too nice?  I care too much? I’m obsessive? I want to be a good person.  I am having trouble identifying just one problem.  And I have  even less of a clue on how to fix it/them.

Then I worry that people think, “seriously, you call that a problem?”  I realize there are much bigger problems in the world, and I should be grateful that this is currently my biggest problem.  But it is consuming me.  I am literally getting migraines from overthinking.  I can feel myself causing my MS to flare and I need to stop worrying and obsessing.

I still can’t identify the actual problem.  Overthinking and being obsessive are only “symptoms”.

Other contributing factors:

  • My best friend just went through several major surgeries and I was unable to talk to or see him for almost a month (long story)
  • my oldest daughter is getting married, and while this is a great and healthy thing I feel like I am losing another best friend ( I was a single parent for most of her life and we have a gilmore girls kind of relationship)
  • my youngest daughter is super busy making her IMPRESSION on the world and quite honestly doesn’t have time for my “neediness” while she conquers mountains.  (she shouldn’t have to take care of her mother)
  • I am “single” but in a relationship (you know the on again off again kind)

Maybe that’s it.  Maybe I am searching for something, or someone while I try to find myself.  Did I mention I really don’t know WHAT my problem is?  I just know that I have one and I really really need to hear that “IT’S OK, TO NOT BE OK” while I figure it out.

#itsoktonotbeokay

 

Why I had a TERRIBLE Thanksgiving day

When you are sad, or in pain it is so easy to crawl back into bed, to feel like throwing in the towel, and to just give up.  In an effort to SHOW UP and “put on my big girl panties”, I am here.  I am processing, feeling, and writing.

Let me begin by saying that I HATE THANKSGIVING.  Not because I am not thankful for many things.  In fact, I remind myself everyday that I have a lot to be thankful for.  I hate thanksgiving because I have so many bad memories that occurred on that day.  So every year I tell myself that THIS YEAR will be the one.   I put so much weight on making ONE DAY perfect.  Can you say setting yourself up for failure?

What I hoped would happen on Thanksgiving:

A month ago it was decided that my family would be having Thanksgiving at my parents home which is about an hour away from me.  My daughters, myself, Einstein, my brother, his girlfriend, my parents etc would all be there. (12 in total).  Everyone is so busy in their day to day lives that I was so excited that we would all be together and able to “catch up”.  I told everyone that I would handle the planning, the menu, the times etc.  Because I wanted it to be PERFECT.  Everyone was on board to let me “handle it”.texting

As I planned, it also occurred to me that with my kids getting older and having their own homes, my oldest daughter getting married, my mother having dementia, all of us still living within an hour of each other, and just life in general, this may be the last chance I have to make the perfect day.  The desire to “hold on to my kids” became as important to me as having oxygen to breathe. I couldn’t very well ask them to not spend it with their significant others, but maybe I could have some “alone time with them” in the morning if we all drove out together.  driving

So for the last month I planned the menu, making sure each person had their “favorite, must have on Thanksgiving food”. I made a carpool plan so that smokers could ride with smokers, those that wanted to show up only for food could get out quick, and I could have that “alone time with my  girls”. I even scheduled time so that everyone’s animals would be alone for the least amount of time.  I DREW A FRICKING DIAGRAM!

A week before Thanksgiving I confirmed all of my OCD thoughts with everyone.  I was so excited!  I even made a post that I was turning off all social media and I did!

Thanksgiving morning I was higher than cloud nine.  Literally so manic I don’t think my feet touched the floor once.  Yah! FINALLY A PERFECT THANKSGIVING!!!!!

Ten minutes before my youngest was supposed to pick me up, Einstein said “I’m not going, I have things that need to be done here, and it’s a minimum four hours wasted”.  NOW, I can tell you what it feels like to be dropped out of a plane WITHOUT a parachute.

I felt the whole plan unraveling.  Now everyone was going to be upset that their plans were changed.  My parents were going to give me the, “we told you Einstein is a waste of time lecture”.  The dogs would be left alone…etc etc etc.. I was crushed, I couldn’t breathe, and the amount of tears I cried would have filled a river.  OH shit, my daughter would be here in just a few minutes.  I didn’t want her to see me like this.  I didn’t have time to kill Einstein and hide his body either.

So into the bathroom I went.  I tried to clean up my face as quickly as possible, but I was still in there when my daughter arrived.  She gave me a hug, and helped wipe my face.  She said, “Einstein isn’t going?”  I mumbled something incoherent, and she took my hand, led me to the door.  I think she may have even put on my coat for me.  While I was in my “fog”, she took control, made phone calls, rearranged things, and made sure that we showed up at my parents in one piece.

I spent the entire day in that fog.  I smiled when I was supposed to, said “Oh I’m fine, and I’m sorry at the appropriate times, but I wasn’t there.  I told everyone I that I didn’t want to talk about it, let’s just have a good day.  But yes I wasn’t there.  I didn’t get my alone time with my daughters.  It wasn’t the perfect day.  In fact, I have spent the last several days just going through the motions lost in my own fog.

Now that some time has past, and the fog has cleared a little.  I realize that I did it to myself.  I set myself up for failure.  I forgot to be thankful for all of the things I am thankful for every day and I only focused on the negative.  I let one person’s decision ruin something that I had worked so hard for.

I haven’t really talked about this with anyone, other than saying I had a blah thanksgiving, but when another person asked me this morning how my Thanksgiving was, I decided it was time to Wake the hell up, get up and show up.  (Thank you for that by the way and to everyone else who offered to talk when I said I had had a terrible day)

I am both Thankful and sorry today.  I am thankful that I have so many great people in my life that care about me.  I am thankful that although my kids are growing up, they are incredibly strong and caring individuals.  ( But I am also sorry that having a bipolar mother made them that way) I’m thankful that both of my parents are still alive.

When I began writing today, I did it in word, not sure whether I was just “getting it out there” or if I would be posting.  I decided to post, because I want to “keep it real”.  I’m sure other people set themselves up for failure, maybe you can relate and know that you are not alone.  Today is a new day and I showed up. I am thankful that while still “covered in dirt”, I am still on the right side of it.   Time to shower, get dressed, and work on “owning my own shit”.