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

November 28, 2017February 9, 2018 ~ msgracefulnot ~ 7 Comments

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

Get your mind right, be present (borrowed)

November 16, 2017February 9, 2018 ~ msgracefulnot ~ 4 Comments

Yesterday I posted about slowing down and needing a break. I thought that technology was supposed to make things easier for us all?!?!? Well with every good thing there is inevitably bad too right? For example, the picture above is of a shelf in my office filled with photo albums that I had made for my daughters back when scrapbooking was all the rage. I have another shelf (almost as big) filled with scrapbooking SUPPLIES. You know scissors that cut every shape imaginable, corners, borders, acid free papers, photo safe glue, and boxes of unsorted pictures.

Ok Grace, here goes nothing! Maybe you should scan the photo albums onto a hard drive and then just give each of the girls a hard drive for Christmas? Sounds like a plan, until the scanner which is supposed to be wireless decides that it needs to be hardwired to function correctly. Yep NO WAY is that cord gonna reach. SON OF A BITCH!…. So I spent the next 3 hours rearranging my office so that the cord would reach. (Yes I realize that I could use my laptop to do this but then I would have to figure out how to download all the drivers for my 1000 year old scanner, because my laptop doesn’t have a disk drive) It seemed easier to move the office around.

I also thought about uploading them all to google drive and letting the girls download them on their own but my google drive is full. How the hell could that be, I don’t even know how to use the damn thing, how could it be full?!?!? (Another hour spent investigating that) Apparently, every picture I have taken with my “Mom you need to have a smart phone, smart phone” was automatically backed up to the cloud. 19736 of them to be exact!!! Yes even the ones I thought I had deleted 3x because I never wanted to share them with anyone. I could literally #feelthegreyhairgrowing.

I decided to take a break, grab a cup of coffee, and relax with more technology?!?!? (Hey no one said I was very smart.) “Let’s check out if the link you tried to put on twitter worked”…… Oh look a squirrel! Some how I ended up reading a blog, then another, then another. (We won’t comment on the amount of time I spent doing this or the fact that I literally spit/dripped/ no full on choked on my coffee while reading a couple of them.) But the last one I read made me STOP. I actually read it 2x, not because it was hard to follow, the writer is actually quite humorous, and one of her earlier posts caused the coffee incident. I had to re read it because it contained a lot of good information that I needed to think about considering my post from yesterday. Her post was titled, Get Your Mind Right. Be Present. If you have a minute, check it out by clicking the link.

I’m gonna leave it at that. No more thinking about tomorrow, or yesterday for the evening. No more facebook, or instagram, or twitter etc.

Life is not a race to the finish line

November 15, 2017October 8, 2018 ~ msgracefulnot ~ 12 Comments

The ever evolving, “Where are you going with your blog? or “What do you want to do with your blog question?”…Guess what! I still don’t know……….lol.
Everytime, I think I have an answer it evolves. For each question I answer, I come up with 20 more, which sends me back to the drawing board.
A couple of weeks ago I CRASHED HARD, literally to the point of tears. After all the tears were dried up, and I walked away for a couple days I let the things that I have learned sink in. I wasn’t crying about the blog. I was crying because I let myself get overwhelmed with trying to do too many things, both on the internet and with my friends and family.

Welcome to my Blender of a Brain

I had this fantastic idea to start a blog. I’m pretty good at finding the positive in even the worst situation, maybe I can help other people do the same. Or maybe I can write about the “taboo” topics of MS, the shit no one wants to share with “normal people”. Yes that would help because then people will know that they aren’t alone! I was also toying with a new (to me) thought…. Do you ever realize how all the commercials on TV are from drug companies? (Some of those side effects seem worse than the symptoms you are experiencing) Pretty scary! Then the conspiracy theorist in me comes out…. “What if its actually the drugs that are making you sick, or keeping you sick?” Let’s test this out. But where to begin?!?! Yes that ONE question turned into 20 more also. Ah ha! That’s what I will write about. My true life journey of getting healthier…..heh. DUMB ASS!!! ( me not you)

I wish I could tell you that I had this great epiphany that I should slow down, but I didn’t. My body told me. The tears were a warning sign that I was getting overwhelmed. The not sleeping at night was another. But the knock me flat on my ass cold, flu, sickness thing that hit me was the real WAKE UP CALL. ( I am the most fidgety, can’t sit still, am hardly ever home person you might know.) The fact that I didn’t get out of bed for two days or leave my house for a week was my body protecting itself and saying….

What I really need to do is slow the hell down. While it’s good to have goals, it is NOT good to flip your whole life upside down overnight to accomplish them. My ultimate goal in life is to be better a better ME than I was before. I am always telling people to slow down and just take a deep breath. So why don’t I listen to myself?!?!

I am also ALWAYS saying, “Focus on the positive”. So here goes. I’ve learned a lot over the last couple months. I’ve met some great people, and made some new friends. I stepped out of my comfort zone several times, and somehow even managed to lose weight. I accomplished the monthly goals I made for myself each month, and now I am just focusing on getting through the next day. One day at a time!

To all of you reading this, this isn’t goodbye. (I paid for a whole year of wordpress :P) and I still have lots to learn. I just needed to “unload” and wanted to say Thank you for spending your time with me.

My decision to start Tysabri Part 5 of 5.

October 29, 2017February 9, 2018 ~ msgracefulnot ~ 4 Comments

In February of this year my doctor said, “Hey your MS seems to have been pretty stable for some time now, I know you are JC neg, but you’ve also been on Tysabri for about 8 years, why don’t we look at switching you to an 8 week cycle?”

W H Y ? ! ? ! ? ! ?

The long and short of it……

“Someone, somewhere” said “The longer you stay on Tysabri, the greater your odds are for developing PML or the JC virus. Tysabri stays in your system for 8 weeks anyway, why not get fewer treatments, so you can continue to receive the drug longer?” Blah, Blah, Blah. (I hope you can tell by the tone of my writing, I feel and FELT this was a very bad decision for me.) What the hell do I know anyway, I’ve just been living with MS for 20 years?!?!

Reluctantly, very reluctantly, I agreed to switch to a 6 week schedule. I would compromise by stretching it out two more weeks, but would not agree to stretch it to 8. For the first time ever, I experienced what people refer to as “slump week”. As I sat here trying to define “slump week” for you, I decided to try to “Google” it for kicks. I typed slump week, and the search finished it for me slump week tysabri with pages and pages of listings. Heh, so I’m not alone.

For me specifically, I describe “slump week” as all of my MS symptoms worsening. I didn’t get new symptoms, but the fatigue I have DOUBLED, as did the amount of time I spent sleeping. I had a harder time focusing. I felt like each of my limbs had gained 30 lbs, and I spent week 5 on the couch. NOT FUN!

In June, 4 months later, I was at my niece’s wedding in Georgia and I suddenly couldn’t raise my toes on my left foot. In fact, the only way I could walk without tripping was to try to lift my entire leg from my hip. (visualize marching?) I don’t have that kind of strength in my hip, leg, or foot, and I fell 4 times that week before I could get home to Illinois to see my doctor. I also developed sciatic pain down the right side of my body. While they say this is not related to MS, I have to disagree. My body certainly did not like the additional sitting I had to do, or the weird way I was having to walk and it was letting me know with all kinds of new pain.

I spent the next 2 months getting MRI’s, seeing a neurosurgeon, (you know it must be the displacement of my spinal cord from 7 years ago) going back to physical therapy, and eventually being fitted for an AFO for foot drop. I was angry, depressed, or sleeping all the time. Wearing the AFO, helped me not trip over my foot, but it caused my calf muscles to spasm daily. Yah more pain!?!?!

ENOUGH was enough! Time to put on more armor and fight!

In August, I told my neurologist that I didn’t care what “someone somewhere” said. I wanted to be on Tysabri every four weeks. It works for me. Stop trying to fix what wasn’t broken! I am very angry with him still ,and I do blame the length between doses as the reason I feel I have regressed. I know, logically, the heat could have affected me, as could all the “family time”, but my gut says it was the schedule change of the medication.

I have received 2 doses at the 4 week interval again, and I am due for the next infusion next week. I am seeing a chiropractor biweekly, and I’ve made it a goal to walk on the treadmill every day for at least a total of a mile. (which I have done every day for a full two weeks) I am not “back to where I was” in February, but I am working hard to get there. One step at a time.

The STRUGGLE is real

October 16, 2017February 9, 2018 ~ msgracefulnot ~ Leave a comment

As if adulting wasn’t hard enough, try throwing technology into the mix. Last week I posted a list of goals for October. They were:

Losing weight and improving my health
Continuing to learn word press and webpage design
Clean out my closet (finishing something I started a long time ago)

I ended my post saying that when you make a tremendous list you set yourself up to fail. I was only going to make baby steps to make a few areas of my life more manageable.

HA HA HA HA HA HA HA HA HA HA HA

In an effort to try to be more organized, I have been trying to use my phone to help me keep track of all these projects, but in an effort to have more free time and be more organized, I feel like my face is stuck in the phone ALL the time trying to learn how to coexist with technology. OMG! I am becoming one of THOSE people!

While I still have my previously mentioned goals, I have slightly revised them.

Walk one mile every day (even if it’s a total of a mile, not a full mile at a time, it’s still more than I am doing now)
While I still plan to continue learning wordpress and 10,000 other apps, I need a bit more structure to my plan. A schedule perhaps?
Continue working on the cross stitch since it has actually been a major stress relief when I unplug technology for the night.
Remember to laugh

This morning so far, I have walked a mile, drank 32 ounces of water, signed into wordpress, and laughed at myself for over an hour. I think I will spend this week blogging about some of my technology faux pas. Please feel free to read, share, and even comment on some of your own!