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

 

My decision to start Tysabri 3 of 5

And then this happened….

 

 

I was trying to continue strengthening my legs (pushing the time that I was out of the wheelchair) and I lost my balance AGAIN, and fell AGAIN.  I was home alone and of course I didn’t have my cell phone with me.  I tried to push myself up and instantly knew that I had broken my wrist.    By the time I was able to get to a phone to call for help, I had peed on myself and my wrist had doubled in size.    ARGH!

fallen
MS and Modesty don’t mix

I called a neighbor who helped me get cleaned up and drove me to the hospital, where they determined that my wrist was indeed broken and they would need to do surgery.

 

 

Over the next few days, I had surgery and began to have ANOTHER flare up. (maybe because of the stress of surgery?)  I don’t know for sure, but back in the hospital I went.  This is when I learned the importance of having a TEAM of doctors that communicate with each other. My new neurologist was not on staff at the local hospital, and I was back to the same doctors that I feel just throw steroids at everything.

While laying in the hospital, I made decision to give Tysabri a try. MS was winning the battle.  I wasn’t LIVING.  To be honest, a part of me didn’t want to live anymore.  I am not saying I was suicidal, though I have been there before, but if this is what my life was going to be,  I didn’t want it.  When I got out of the hospital I again went to see “the wizard” in Chicago, to start the process of being approved for Tysabri.

Some of the most important things I learned while making my decision to switch to Tysabri, and about living with a chronic illness in general are:

  1. “Dr. Google” is a scary ass monster
  2. There is no shortage of information regarding MS available online (in fact there is almost too much)
  3. While most have good intentions, most people on Facebook and other areas of the internet (myself included) are not doctors, and since their symptoms of MS and their lifestyles are probably different than yours, so is the best course of treatment for them.
  4. Doctors are just “practicing” medicine…they don’t know everything. Unfortunately, some of them are paid in some way to promote drug therapies.
  5.  It is so important that you have an unbiased friend. You need to have someone that you can share your fears with.  If you don’t have a friend that fits that description, there is NOTHING wrong with seeing a counselor.

In addition to spending countless hours on google, I found a group on Facebook for people that were taking tysabri, and made a new best friend in the process.  I could probably write an entire website on our friendship and bond over the years, but I have to save that for another time.

I am not endorsing Tysabri in any way.  I am only sharing the experiences I had, and what led to MY DECISION to begin Tysabri.  In my next post, I will share some of the experiences that I have had while being on this medication. Thank you for following!

I’m really having fun meeting new people 🙂