Do you look like your pet?

December 3, 2017February 9, 2018 ~ msgracefulnot ~ 10 Comments

As I laid my head on my “dog pillow” the other day, I noticed that our hair consists of the same colors (blonde and black). It made me recall a meme, post, article, or video that I have seen that showed numerous pictures of dogs and their owners with very scary resemblances. I began to wonder if there were other similarities… while my mouth is always open like hers seems to be, ( I talk ALOT) I think I have a bit better control at keeping my tongue inside my mouth. Then again, I also think people that know me in real life have plenty of pictures of me sticking my tongue out. (Not sure if it counts that I stick my tongue out on purpose, I think my dogs tongue just hangs out.) I don’t think my ears are nearly as big, or my nose for that matter, but we definitely have the matching hair color thing going on. By the way, my GSD’s name is SNUFF.

My other dog is D.O.G. (not dog, but each letter individually, D.O.G). I think she thinks her name is MOVE, GET OFF THE COUCH, and YOU’VE GOT TO BE FRICKING KIDDING ME, though. She looks at me whenever I say those things so maybe, poor D.O.G.

Actually there is nothing poor about D.O.G., she is spoiled rotten. She is allowed on my bed, she gets lifted into the car, she even sits in the front seat, and for being the smaller of the two (three if you count me) she is the ruler of the “bitches”.

I will save the discussion of my three cats for another day, but Foxy, the white one, rules the whole house. As usual I digress….

So about D.O.G…..

I have always been an animal lover, but the last dog I had was hit by a car, and killed while a friend was “petsitting”. (That was almost 15 years ago.) It took me seven years before I could bring myself to get another dog, and the initial reason I got her was for companionship when my MS put me in a wheelchair. Over the years, we have become codependent. I don’t like to sleep without her and she doesn’t like me leaving the house without her. So I guess it works?

OMG am I ADHD!!! The point is, do I look like D.O.G? If you ever saw me “precoffee” I am sure I do.

I love how her teeth are spaced like that! And ok maybe we both have a face that only a mother could love 🙂

So that’s it! That’s my life in a nutshell. Beautiful children and animals, coffee and cigarettes, and lots of horrible prescriptions for a nasty monster of a disease. MS really sucks!

When I was telling a friend about the do pets look like their owners meme, she says, “Oh yes, I can totally see you and snuff…..you even cock your head to the side like she does when someone is talking to you and you don’t understand”…..SMH FML and all that.

Thank you all for reading along. One day I will actually get to the point of why I started this blog and talk about how to cope with MS, depression, ADHD, etc, but for now I am having so much fun meeting new people and those things just plain suck to think about.

Do you have any pets? Do you look like your pets? Do you know anyone who does? Please feel free to share them to my facebook page if you do. 🙂

Oh NO, ANOTHER POST about Tysabri

December 2, 2017October 8, 2018 ~ msgracefulnot ~ 15 Comments

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

I 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?!??!

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/

Trying to find “Joy” (inside joke)

November 29, 2017October 8, 2018 ~ msgracefulnot ~ 7 Comments

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…..

Choosing Tysabri

November 2, 2017October 8, 2018 ~ msgracefulnot ~ 12 Comments

I received my # 95th dose of Tysabri yesterday, and FINALLY did the bloodwork for The JC Virus that is required.

While writing My decision to start Tysabri (the 5 part series) last week, I was able to work through my emotions regarding pressure to change medications and I have solidified my decision to stay on Tysabri. Maybe not for the rest of my life, but for now, it works. I am fully aware of the risks associated with remaining on the drug, but this is MY Decision, My MS, and MY LIFE. (I may have to work on finding a new doctor soon, but I will deal with that when the time comes as well.)

So to answer the question, “Why did you choose Tysabri?”

BECAUSE FOR ME, IT WORKS!

I am fully aware of the risks associated with the drug, but I believe….

I did not ASK for MS, but you play the hand you are dealt. I would rather have QUALITY of life than Quantity. Hell, I jumped out of a perfectly good airplane remember? Both of my daughters are in their 20’s, and although none of us want to “say goodbye”, I know they are strong and have all the tools they need to survive in this world. Hell, I believe they are also strong enough to help change it. The world we live in today is a scary place. (I think the city I live in was ranked the 6th most dangerous city in the United States.) My point is that I am more likely to be shot sitting at a traffic light, than to die from MS or PML. When I do die, whatever the cause, I am donating my body to science. Maybe they can find a cure for MS that way?

For now, I am making the most of each day I have. If I can help ONE person feel not so scared and alone in this world… I have lived.

Defining Slump Week Tysabri

October 31, 2017October 8, 2018 ~ msgracefulnot ~ 5 Comments

Recently, I have had several people ask me to define or explain “slump week” as it pertains to taking Tysabri. As I sat trying to come up with a “blanket answer”, I realized that there isn’t one. Each person that has MS is going to have a different form of MS. Their symptoms and ways of dealing with those symptoms will also be different. Then I thought, “who is the person asking the question”? Do they have MS? Have they recently started Tysabri and they are afraid of “Slump week”? Maybe they are trying to explain what slump week feels like to someone else that doesn’t have MS?

While I am always happy to talk with people and try to explain, not everyone is comfortable talking on the phone, meeting in person, or even just reaching out to someone in email. So, I will attempt to explain it here and hope that it helps answer the question for some of you.

For those of you that are afraid of slump week, let me start by explaining what it is NOT.

It does not mean your MS is getting worse or that you are experiencing a flare up. It may feel like it in the beginning, because your MS symptoms may be a bit more noticeable. You may be a bit more “foggy” than normal. Your legs may feel heavier than usual. If you fight fatigue, you may feel like you haven’t slept in days even though you just woke up from a full eight hours. Basically, it feels like your MS symptoms are more pronounced than your personal norm. Everything feels a bit “off”.

It’s also Important to know that not everyone goes through slump week. For those that do, it isn’t necessarily a full week of more pronounced symptoms, and it may not happen every time before your next infusion. If you have MS, you hopefully have learned by now that there are ways to work around your challenges. Maybe you can’t walk as long, or as far as you used to, but have learned that a cane or frequent breaks can help. The cool part is knowing that, IT WILL PASS!!!!!

For those of you looking for a way to explain it to someone that doesn’t have MS or has not experienced Slump week, think about your audience and try to use something from that person’s life to explain. For example, if you are explaining it to someone who is a caffeine addict, ask them to think about the way they feel before they have had caffeine for the day. What if they had no way to get that caffeine fix? They would spend a lot of time trying to come up with a work around for it, and that is probably time that they were supposed to be accomplishing something else. Maybe they would be late for work, because they had to stop to buy some form of caffeine. Or worse, while they were driving to pick something up they almost got into an accident because they didn’t have enough caffeine to focus on driving. Of course, this example would not work for someone that doesn’t drink caffeine, but you can try to find an example from their personal life to use. You can also explain that it’s like having a full week’s worth of Mondays in one day. Another example is sitting in road construction, you will get where you are going eventually. It doesn’t actually cause you physical pain, but it does make you uncomfortable.

Ask them to imagine being given a task or several tasks, but not being given the tools they need to complete the task. Sure you can probably find a way to make it work or wing it, but that is frustrating and tiring, not to mention very time consuming and usually unproductive.

As I sat trying to think of an analogy that would work for everyone to explain slump week, I came up with quite the list of examples of life experiences that cause “regular”people to feel frustrated, or unproductive that you might be able to use when trying to explain slump week. Ask people to think about how they feel when these things happen to them, then tell them they have to do it over and over again numerous times in a day. THAT is what slump week FEELS like. It’s not gonna kill you, but it’s not any fun 😦