I came back from Boston Wicked Smaaht

April 12, 2018April 12, 2018 ~ msgracefulnot ~ 11 Comments

Ok that’s not even a little bit true, I’m still the same dumb ass I was before I went on the trip, BUT I did learn ALOT (good and bad). It was definitely an adventure…..

If you’ve got some time I would like to tell you about it…..well about getting there and our first day in the city.

SOMETIMES the weather forecast is right

Before we left, I had been half listening to the forecast. The forecasters said that we would be ‘blessed’ with a wintry mix of snow, sleet, and rain and temps of 26 degrees beginning 2 hours before we were to head out for the airport. After sleeping 3 hours, I woke up at 1 am, showered, coffeed, and looked out the window. Of course they picked THIS time to be correct….smh

We left Einstein’s house at 2 am, and headed to my house to pick Thing 2 up. She was driving us to the airport. (well I was driving us to the airport, and she was taking my car home) That 20 minute drive took almost an hour….grrrrr

ok MORE coffee….(the American Airlines app, I downloaded on my phone said the flight was still on time, so we were doing this) Driving to the airport sucked, since everyone forgets how to drive in the winter. (It’s not like we haven’t had a long enough winter for people to relearn) smh AGAIN.

When we got to the airport, Thing 2 ran in and grabbed a wheelchair for me. I NEVER thought, I would be so grateful to have one. (Our trip hadn’t even started and I was completely exhausted.)

I won’t claim that it was perfect, but since I know the rating system affects the person driving the wheelchair directly, (he really was a nice guy) I did give the experience a perfect 😀 score on the “she has been delivered” tablet you have to sign when you are dropped off at your gate.

Security was a breeze

I probably shouldn’t say this, but the “trick” to getting through security quickly is having a bag of pee strapped to your leg. The poor girl that had to do my pat down apologized so many times about having to “feel me up” and couldn’t comprehend what a foley catheter was, I don’t think she even noticed or swabbed the great stuff on my hands. In hindsight, it is really scary that the people that are supposed to be providing our security are so afraid of “offending” someone, that they “overlook” certain things. I hope I am wrong and they tested me some other way without my realizing it. I assure you I will not be complaining to them.

Clear skies

Boarding the plane was also a breeze. I did get a little nervous when the person sitting next to me started coughing, (Oh no, not the plague again) but for supposedly being a full flight, she was able to move to another seat closer to other family members. YAH ME!! In fact, both seats next to me were empty!!!! Double Win! I took off my leather bomber jacket, used it as a pillow, used my sweatshirt as a blanket, and I was out. 🙂 I woke up a couple hours later in Boston, not quite fully rested, but refreshed nonetheless.

The airline had a wheelchair waiting for me as I deboarded the plane. I didn’t get a picture of the woman driving (though I should have since she was also the one who helped me reboard on the way home and she was SO HELPFUL) After taking us to the baggage claim area for my companions suitcase, I explained that “according to my research” we were supposed to take the SL to the blue line and I needed to buy a ticket somehow. “Oh no honey, you don’t need to buy a ticket, it’s all free”, she said. Huh? Nothing in life is free.

There are still some free things in the world

Transportation FROM the airport is free via the Silver Line and the Subway (as long as you don’t leave the station). Who knew?!?! We boarded the SL1 which is an electric/gas powered bus. It was electric leaving the airport, then temporarily shuts off to restart and run on gasoline…..WHAT?!?!? Don’t laugh, I really had no idea such a thing existed….

We rode the SL to the end of the line and then tried to figure out which direction we needed to head on the blue line to get to our destination.

I must really have the “damsel in distress” look, because people were constantly coming up to me offering to provide help or direction. A man and a woman (not a couple) even debated with each other which way would be easier. The man said we should take this route…the woman directed her eyes to my cane and suggested that MAYBE, the orange line would be a better choice. Orange line it is!.. The announcement said the the orange line would be approaching on the center platform….

Look BEFORE you leap

I heard “center platform” and crossed the tracks to head that way. No I did not notice the train that was heading directly for me before I stepped onto the tracks. Talk about your life flashing before your eyes….HOLY SHIT….(yah for the foley cath, since I think I would have pissed my pants without it). No I didn’t get hit by the train, but I didn’t escape unscathed either.

Wait there is more….

So now I am standing on one side of the platform, my companions on the other. The orange line pulls up and we need to be on that train, but how to communicate that? I am using hand signals through the glass trying to tell them to get on the train as I proceed to board. Once on the train, I don’t see them….Oh shit should I get off?!?!? I try to step off the other side of the train to see if they are still on the platform, only to get my feet caught up in my suitcase or the cane and down I went. 20 minutes in Boston and I wipe out. The upper part of my body is on the train, but my legs are hanging out the door and I can’t pull them up.

I really am a train wreck (pun intended)

For the first time in my life, I am grateful that people don’t mind their own business. Someone pulled me into the train car just as my companions found me. How the hell have I survived 44 years on this planet?!? Have I mentioned GRACEful I am not?!?!

I’m not done yet though…. not with my life or with this story….

We did make it to the apartment we were staying at to drop off our bags without any further mishaps.

We also found a great little pizza place.

While we were eating we decided our next stop would be the Prudential Skywalk.

The UBER app can kiss my ass

Believe it or not, I did listen to the advice I was given before leaving that uber was the easiest way to get around while we were there, so I downloaded it to my phone before leaving. After my “near death experiences” from the morning, I thought MAYBE now was the time to actually use it. The app had other ideas.

OH come on!!!!!!!!! WTF?!?!? How can it be disabled, I have never even used it before?!?!? Visiting the website they sent me too was no help either…. Ok so back to the train…. If at first you don’t succeed try try again? In fact I was more determined than ever to figure this “whole public transportation” thing out. When we got back to the train station, I took a picture of the map (schedules had changed effective April 1st and new ones weren’t available yet?!?!) I made a “new friend” who suggested that we buy a one day charlie card which would allow us unlimited use of the buses and trains throughout the city for 24 hours.

By the end of the first day, I was cold, tired, and completely worn the hell out…. but I CAN boast that I have become quite proficient at using the MBTA. ( I still think that using a horse would have been easier)

IT RAINED ALL DAY!!!!!! (at least it wasn’t snow though)

I took a selfie before crashing for the night. I don’t know that I will claim damsel in distress, but definitely helpless, homeless, or in someone in need of assistance.

I’m not sure if I made an impression on Boston, but after one day, it certainly left an impression on me.

I will write more about our trip later this week, not only did I come back from Boston with a semblance of a silly accent, but I also picked up a scratchy voice and fever 😦

We must have a bad connection

March 4, 2018March 3, 2018 ~ msgracefulnot ~ 17 Comments

It’s so easy to tell people “don’t over do it”, “take it easy”, “slow down”, or “don’t worry”. I know it’s easy to say, because I tell people those things all the time too.

My brain tells my mouth to say it, and words come out. For some reason though, my ears do not pass the message on to my brain. (or something like that) Something is definitely NOT working, the dots are not connecting….. smh

“Don’t over do it”, translates to

your pain is manageable today, you better get that done while you can
you don’t know WHEN you are going to feel this way again, so do it NOW!!!
fucking MS smh
but you are SO close to being finished, just do one more?!?!?

“Take it Easy” translates to

It’s ONLY laundry, how hard could this be?
I will only make ONE phone call (never mind that you are going to spend an hour on the phone waiting for a live person)
or getting “pissed off” because NOTHING FEELS easy….grrrr

“Slow Down”, starts the process of

but there is so much to do
never enough time
but RIGHT NOW I feel OK

PART of it is MS, part of it is my personality. I HAVE to make the MOST of each day! I HAVE to feel like I am contributing SOMETHING to the world, instead of being a burden! Some days though, I’m just bored or “stuck in a rut” I feel that pushing myself and pushing my limits will make me FEEL more alive.

I take the GPS estimated time of arrival as a time trial challenge.

So for those of you that also struggle with this “disconnect”, how do you manage this? How do you “slow down” and not overdo it? How do you try to “save” your energy for later?

I have heard (and said) that I should Prioritize and focus on One thing at a time. Ok, here goes, my main goal is to be able to Walk down the aisle at my daughter’s wedding next weekend. My eye is on the prize so to speak. I have set up my week with one thing each day and tried to space the “working days” in between the “recovery days”.

Monday

I have my Tysabri infusion at 9 am. Because I know that I will be “wiped out” for the rest of the day, my mom is coming out to drive me and take me home afterwards. That’s it! That’s my whole day.

Tuesday

I am installing 5 electrical outlets in my house. Since most of my furniture is just kind of piled in the center of the rooms, now is the time to do it. While I have pulled wires, and connected outlets for years, I do still need help. My dad is available to help me before his surgery, which has been rescheduled for March 20th, so now is the time. Unfortunately, this will involve some more climbing in my attic. Definitely a Working day.

Wednesday

I am getting my nails done for my daughter’s wedding. I haven’t done this in years, but if memory serves we correctly, it is a somewhat “lengthy process”, meaning forced RELAXATION time. If I am able to “lose the boot” as planned, maybe even a pedicure?

Thursday

One Doctor’s appointment with my chiropractor to try to adjust any “damage” I might have caused my body over the week. I have to pack for the out of town trip and that’s it.

Friday

Out of town for the wedding!!!!!

So there it is. I have prioritized. I have planned minimally, allowing myself several rest breaks, and I have “my eye on the prize” Wish me luck?

Will I ever learn?

March 2, 2018October 5, 2018 ~ msgracefulnot ~ 27 Comments

Will I ever learn patience or to slow down?

Nope, probably not. (Hey don’t shoot me, I’m being honest here) My whole life I have struggled with patience, and I have always been “in a hurry”. When My MS is at it’s worst though, my body won’t allow me to be impatient or in a hurry, and when I try to, I get hurt.

Yes I got hurt again 😦

I got hurt, but I’m not dead. I will explain what happened in just a moment, and you can even “yell” at me if you think it will help, but first let me explain, well try to explain why I did it.

So I wrote the other day that a trailer “fell into my lap”. I had help for a couple hours, I moved what I set out to do and that’s all I was going to do. My dad told me that since he thought he was having surgery the trailer was free for a couple weeks, and I might as well have the kids drop it at Einstein’s since he wouldn’t be using it. (That way I could take a “slow and steady approach” to loading it.) Thing 2 and her boyfriend “D” dropped the trailer off in Einstein’s driveway for me, when they were done moving the bikes.

Just because I am proud of my daughter I took a video of her backing the trailer in. This is funny to me because “D” doesn’t “trust her” to drive HIS Truck, but knows she is better at backing up a trailer than he is….That’s MY GIRL!!!! but I digress….

BUT THEN….

The temperature changed, not just the outside weather temperature, but the temperature in Einstein’s house wasn’t as frigid. I will write more about that another time and in another place, ( I think a new blog is coming ) but the verbal knives weren’t flying anymore and I started “getting cold feet” about leaving, so I HAD TO GO.

Einstein had been complaining about where the trailer was parked, and had even tried to move it by hand…. I did not say out loud “THAT”S NEVER GONNA HAPPEN”….but it did inspire me to make a call….

There was help available. A young man that I had friended a year or two ago while I was taking classes, was willing to help me move. We will call him “J”. (He said, “Hell I’ve got a truck, trailer, and plenty of friends”) just pick a day. That’s something that I would say, not something I am used to hearing so….ok “How about NOW?” came out of my mouth.

and that’s how it all began……

When you have help you take it!!!! “BUT don’t you EVER take help without working your ass off just as hard as the person who is giving you help!!!!” This one I think was literally beat into my ass as a kid, so no way is it going away anytime soon.

Einstein was NOT happy that I was having a “DATE” (as he called it ) over to help me move, so it was only “J” and no friends. Einstein moved most of my furniture to the doorway in preparation. (Did I mention a new blog coming soon?….when I don’t live in HIS house)

So the trailer was quickly loaded, and my car was filled, and off I went. Almost all of my furniture that can not be strategically shoved in my car has been “deposited” in my new place. (Of course it wasn’t until I had set up my big comfy couch that I realized there is no electricity run to the wall of the west side of the “living room”) But that is another story for a different day.

So what did I do?

I worked my ass off!!!!….and then some….I THOUGHT I broke my foot again. I remember the doctor saying, “this is going to hurt a bit”, as he stuck a needle in my foot. There was quite a bit of pain. (enough to make me vomit and then pass out) His orders were keep it elevated and iced all day. Back in the boot or use your wheelchair for one week…and of course take these drugs. I give in, not up, but I give in…for now.

The “moral” of the story is I did what needed to be done and now my body says IT’S done. I didn’t PURPOSELY over do it or rush. It’s so hard not to “overdo it” when you ARE feeling well, considering you KNOW that the “NOT feeling well” is just around the corner.

Guest Blog for Newly Diagnosed!

February 21, 2018February 21, 2018 ~ Positively Alyssa ~ 31 Comments

I feel truly honored to be doing this guest blog for my dear sweet friend Grace. Grace is an absolutely phenomenal person and I am so thankful that I have had the chance to get to know her. Grace inspires me every day with how humble and strong she is! I know that she will disagree with me on this, but that just goes to show how modest she really is!

Are you a newly diagnosed MS Warrior? I say MS Warrior because all of us that have MS are so incredibly strong and fiercely tackle our illness! I was diagnosed with MS almost 18 years ago when I was just barely 19 years old. The events of this day are embedded into my mind forever. I remember being absolutely terrified because I had only known one person that had MS, my biological father’s wife, so NO relation at all and I guess it is clear that we are not close. She was of course a lot older than me, but she was in a wheelchair so I immediately thought that was going to be me. In my childlike mind I went from being diagnosed, to being wheelchair bound and then to death! But, now that I am older and wiser I know all those thoughts were NOT true at all! Like I said, I have been living with this illness for 18 years and I am still walking and living life to the fullest!

My best advice to anyone that has been recently diagnosed or even those that have been living with MS for years is do your own research! Yes, you should trust your doctor, but you also know your body way better than anyone else. The doctors can recommend what they think is the best course of action with medication, but you are the one that has to take it, so you need to feel 110% comfortable with the choice because it is ultimately your choice, not theirs!

I can give you a rundown of what I have taken and what I have dealt with, but this is just my opinion and my experiences only. In the big picture I am not a medical professional, but am a professional in my own body! All those years ago when I was first diagnosed there were not options for oral medications only injection types. So, being young and naïve, I listened to my doctor and started on Rebif. Rebif is a 3 times a week sub cue injection. It honestly was not the injection part that was hard for me, it was the burning sensation I felt when the medicine entered my body. It felt like I was injecting myself with a stream of fire! Also the side effects from Rebif caused me to have flu-like symptoms the following day, which was no fun. I did what was recommended and pre-medicated, but being the stubborn person I am did not understand why I had to take one medicine in order to take another medicine that was supposed to help me. I started missing doses regularly because of how it was making me feel and the bruises I had from the injections and then just decided to tell my doctor it was not working out for me and stopped it all together. I also ended up having more flare ups because I was not taking a disease modifying medication.

The next medication that was recommended to me was Tysabri. My doctor felt that Tysabri was still strong enough to keep my illness under control and I did not have to inject myself. Tysabri is a once a month infusion which really made me nervous, but I tried it anyways because I wanted my illness under control. For the two months I was on Tysabri I would be very sick for a few days afterwards unable to keep food down. I told my doctor that I could not continue taking something that caused me to be so sick and refused to go back for another infusion. I told y’all I am a very stubborn person, especially when it comes to what is best for my health. I am a little surprised I did not force my doctor into early retirement!

My doctor being the patient man he was talked to me about other options that were available for me. Luckily oral medicine was finally being released and we both agreed it was the best course of action for me. I would not have to inject myself with anything and I would not have to deal with infusions. I decided that Gilenya, which is a daily oral medicine, would be the best solution for me. We only ran into one very minor issue on Gilenya, my white blood cell count dropped to a very dangerous level, so instead of taking it daily, I would take it 3 times a week until my next blood test. Everything went very well on this plan and my next blood test came back great, so we increased it to four times a week. I have now been on Gilenya for 6 years now and went from taking it 4 times a week to daily and I am doing pretty well overall.

Although, last year in July I had so many people talking in my ear about what they thought was best for me that I stopped listening to my own thoughts, I guess you can say I was hearing too many voices! My husband thought that I had been on Gilenya for too long and needed to give my body a break because he remembered back when I first started it there was a protocol that said I should only be on it for 2 years and then get off of it for a short time, but be on something else. Now in his defense, I was having a lot of sinus issues and did some research on Gilenya’s website and found that there have been some cases of increased sinus troubles. I thought about this for so long and stressed myself to an extreme before deciding to try another oral medication. I did a lot of research on different medications before making the switch to Tecfidera. I went off of the Gilenya for one month to clear my system of it and went on Tecfidera, which is another oral form taken daily. I am not saying it was a bad decision, but I ended up having some serious issues. It was in October when I had the worst flare up I have had since being diagnosed. No one can say for sure if it was the stress I put myself through deciding to change medications or if it was the fact that Tecfidera was not strong enough for me. Well my doctor did tell me it was because the Tecfidera was not strong enough, but it was against her advice in the first place. Honestly, I do not have the best relationship with this doctor, my old that I trusted retired. After having a terrible MRI report, I decided to go back on Gilenya because it did so well for me for 6 years! Until there is a cure, I probably will not change medications again!

A very solid piece of advice I can give you is to avoid stress as much as you possibly can. I know it is hard to avoid stress because it happens to all of us, but stress is a HUGE trigger for flare ups. Honestly, I am giving you this advice because I am a walking talking stress case and it has caused me so many additional problems and pain! I don’t want to scare you anymore than you probably already are, but the flare up I already mention I had in October, was solely due to stress! All that stress could have and should have been avoided, but it was not because I allowed stress to consume me and I am still dealing with some issues almost five months later. It was a very harsh lesson to learn, but I already knew what stress could do to your body and I just let it get the best of me. I have found the best way to combat stress is to find a hobby that you enjoy! My hobbies that I truly do love include reading and writing; I just wish I had focused more on my hobbies than I did in October and less worrying about my illness.

I want you to know that you are not alone with this battle. There are so many people out there that understand your struggles and will support you! I am always here for you if you have any questions or need to someone to vent to. I started my own blog in July because I wanted to be able to raise awareness of MS but also offer support to those in need. My blog is https://wordpress.com/view/fightmsdaily.com. I am a very strong believer in positive thoughts create positive things in life. I do realize it is not always easy to think positive when you are scared, in pain or suffering, but that is where it helps to lean on someone else! I can also tell you that following my dear sweet friend Grace’s blog will be helpful to you. Grace is pretty amazing and has a tremendous amount of strength and courage!

Always, Alyssa

A Letter to My (pre-MS) self

February 19, 2018February 19, 2018 ~ Steve Markesich ~ 20 Comments

letter

Dear Steve

MS will invade your world very soon. When it arrives it will be unexpected, shocking, and you won’t know what to do. Your inclination will be to ignore it. Don’t.

Your mind will swirl and you’ll become consumed with worry, so these words are intended to provide you comfort and advice. Whether you heed them or not is entirely up to you, but don’t say I didn’t warn you.

Your symptoms will be similar to those of the millions that suffer world-wide from this disease, but they won’t be identical because the way an individual experiences MS is as unique as their fingerprint. It’s different for everyone, so what works for someone else won’t necessarily work for you.

MS comes in different flavors. The most common is RRMS, or relapsing-remitting MS, which is the come and go kind. Those with RRMS experience symptoms, called flares, and these can raise hell with them in a variety of nasty ways over a short or extended time period, but they go away. This process repeats itself, but the frequency in which it does varies.

You will be lucky in one respect with your MS, but not here. Your MS will be the primary-progressive kind (PPMS), which means it comes and stays, and gets gradually worse over time. Tough break pal. Your goal will be to limit the progression to a snail’s pace.

That’s all the detail I’m going to offer in terms of what you will have to deal with. No sense in causing information overload since you are still trying to grasp the reality of the situation. For now, I’ll keep it basic and offer you these suggestions that I hope you take to heart.

Learn as much as you can about the disease. Go on web sites and become your own expert and advocate. Beware of the message boards, however. It isn’t that they provide bad information, but those who post are generally going through a bad time and are looking for help. Happy stories are in the minority, so focusing on these boards can give you the impression that you’re royally fucked. That isn’t the case, so glean what you can from these platforms, but don’t let them be your bible.

Create a network of MS friends you can share information and commiserate with. You can try support groups in your area, but I think blogs are a better place to start. Not only are these a good place to get information from people who are offering to share their experiences in a less sensational and often humorous manner, but many of these authors are a hoot and more than willing to stay in touch. Who knows, maybe one day you’ll start one yourself.

Get a good neurologist, and don’t be surprised if you go through a few before you find one you trust, who is knowledgeable, who has an open mind, and is willing to work with you. They must specialize in MS.

Don’t waste your time and money by travelling out of state to visit an institution that is re-known for MS research and treatment. You’re stubborn though, and are going to ignore this advice. So don’t be shocked when you are dumbfounded and pissed about what they tell you, and wonder how in the world they got their reputation.

Get used to needles because they will become part of your life. When you start self-injecting, it takes some getting used to. Please concentrate on what your doing, otherwise it will sting like a bastard and the resulting bruises will be impressive. And when you have your spinal tap, don’t let your neurologist talk you into having it done in his office. Have it done at the hospital. Trust me on this.

Self-injecting will be temporary, and you will graduate to an infusion center. Make sure you drink plenty of water in the days leading up to and the morning of the infusion. This keeps your veins plump and makes it easier for the nurses to hit one. Of course, you will learn the hard way and start following this recommendation religiously only after it takes six attempts to get two needles in, and your arms look like raw hamburger.

Get used to drugs, and not necessarily the ones you did in college. Most MS therapy involves pharmacology. Your drugs of choice will be steroids and chemo, believe it or not. Get these infusions on a Friday because the chemo will knock you on your ass two days later (Sunday). Why use your PTO if you don’t have to?

Another area you won’t be lucky about is a rare and little known side effect from steroids: hiccups. They will occur the day after your infusion, come and go for the entire day, and be annoying as hell. When you get the three-day course of treatment at home, they appear on day four and will last for three solid days. I shit you not. They will literally persist all day and night, and you will want to shoot yourself.

Apheresis: you will learn what this is when you go to the infusion center the first time and see other patients hooked up. It isn’t as bad as it looks and it will help you.

Get rest and watch your diet. Fatigue is a very common symptom so there is no need to make it worse. You will become less active over time, so watching what you eat is important because you don’t want to become a blimp. Oh, by the way. You are going to be ravenous the days you get infused with steroids.

Stay out of the heat. Increasing your internal body temperature raises hell with your symptoms, so avoid prolonged exposure to hot and humid conditions. And say goodbye to hot tubs and saunas. Yeah, I know, that really sucks. Deal with it!

Here is the one area where luck will be on your side. Pain is a very common MS symptom, and it can be excruciating at times. You, fortunately, will not have to deal with that, at least not for the first eleven years. If it finds you, you live in a state that has legalized marijuana for your condition, and it’s great for pain. I’m not sure if what they provide will give you a buzz though.

Don’t give into the disease, but don’t be stupid either. Exercise regularly and keep your core as strong as possible. Stay active, do as much as you can, whenever you can, but know your limits and don’t exceed them. The truth is you’ll be able to do mostly everything you can do now. The only difference is you will need to do it more slowly, more carefully, and in stages.

Don’t give up the intimacy in your life. You don’t have to.

half full

Most importantly, living with MS is all about attitude. If your glass is half-empty, you will focus on the negative, what the disease has taken from you, believe you have become a burden to everyone around you, and that your life sucks. This will become a self-fulfilling prophecy and cause your life to spiral into the toilet. Don’t go there.

If your glass is half-full, on the other hand, you will view this as a bump in the road and be fine. Granted, this is a huge bump, and there will be days where optimism is hard to find and you’ll want to scream, but ride that wave. If you do, you will learn to notice and appreciate many little things that you once took for granted, which is never a bad thing. You’re self esteem and sense of worth will also remain intact. Having a good attitude is vital, because MS is part of who you are now. It will not define you or rule your life unless you let it. And really, what choice do you have?

Remember, you are still the same guy you have always been, albeit with a big hitch in your giddy up. You’ll still have the same hopes, dreams and desires. You may have to amend them, but you don’t have to lose them.

Good luck.

Steve