A Letter to My (pre-MS) self

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

 

 

 

 

 

Please put more on my plate?!?!

When you are making “to do lists”, it is important to prioritize your tasks so that you don’t get overwhelmed, however, sometimes due to other circumstances ,or other people’s influences (which happens all to frequently for me) it seems that everything has to be done at once.

  1. My kiddo is getting married in March.  The date is picked, event is planned, and everything is paid for, now it’s a matter of waiting for it to happen.  (Which as that day draws closer will cause a whole new TO DO list to be created.) but for now I can let that rest.  My kiddo is hyper organized and I’m really just here to do what she asks of me and for moral support.
  2. Botox Surgery– Yah this date has come and gone thankfully, but I DID NOT expect the 15 lb weight lifting limit for 2 weeks.  (yeah that’s not gonna work for me)
  3. Getting off the Grace/Einstein roller coaster.  (My body kind of decided this one for me).  I have realized that when the heart and brain argue, it’s really the liver that pays for it.  I have finally figured out where I will be living, but not all the logistics of it yet.  It’s the fricking middle of winter Grace, GREAT timing!!!!…smh
  4. Planning my trip to Boston and blogging about it.  (This has been temporarily tabled for now.)  Airfare is purchased, and sleeping arrangements have been made and “paid for”.  More about that later though.  (I will get to finishing the posts about that but again, tabled for now)
  5. The newest, most pressing issue is that my father is having his shoulder replaced next week.  It’s funny, I have literally had over 40 surgeries in my life and for the most part, I take the procedure and recovery in stride, but I am losing my shit about my DAD having surgery.  I really can NOT handle my loved ones going through pain.  I would gladly take his place, ok well maybe not gladly, but if he could avoid it, I would certainly step in his place.

On a positive note, I have the time to be there.    I HAVE to be there.  As I mentioned before, I am always the patient.  I know the rules for that.  I know that I have to fast for at least 12 hours before surgery.  I know that I can’t wear make up, jewelry, deodorant etc.  I know most of the staff in the surgery center of my local hospital by name, and I even know some of their children’s names.  I know the drill.  But NOT this time.

My father’s surgery is being performed at their local hospital (an hour away).  I  don’t know the doctor, or the doctor’s abilities.  I don’t know the staff, I don’t know….oh my god I just don’t know.  I do know my role as a patient, but I don’t know how to be the one on the outside waiting.  Any advice? Please?

  • Update

Surgery is being rescheduled……. (at least I got the call before I drove all the way out there). Doesn’t make me any less nervous though

 

 

Newly Diagnosed with MS

I have tried so many times to write a blog or make a video for someone that is newly diagnosed with MS,   I write 1000’s of words, then I reread what I have written, only to realize the advice doesn’t apply to everyone.

The reason for this is that MS is not a “one size fits all” type of disease.  I don’t mean because there are 4 different types of MS, I mean because it affects every single person differently! EVERY SINGLE ONE!

Not only will MS affect YOU differently than it affects your cousin’s sister’s uncle’s aunt that has MS, but any treatments YOU might try will affect YOU differently as well.

I have made this video, more than anything so that you realize YOU ARE NOT ALONE!  As you wade through information on Dr. Google, and hear stories from other people PLEASE, PLEASE, PLEASE keep in mind that people are only sharing THEIR STORIES.  (and negativity breeds negativity)

Some people will tell you to read everything you possibly can about MS.  (Dr. google is a scary monster) Others may tell you to join support groups, Facebook groups, eat an all natural diet, take this drug or that drug.  My cousin swears that “…..” works….BUT you need to pick what works for you.

MS is unpredictable.  There is good and bad information to be obtained from the internet and social media.  If you keep an open mind and are aware of the possibilities, you only prepare yourself for the worst case scenario. You can’t live your life in fear of the unknown, THAT alone can paralyze you.

Below is another video in which I talk about not only how I was diagnosed, but also how I “met MS”.

My story- being diagnosed with MS

So my advice to EVERYONE that has been newly diagnosed with MS or another chronic illness is to:

  1. Take a deep breath
  2. Take another one
  3. Acknowledge that while this may suck, there are worse things in the world
  4. Learn everything you can about your condition, BUT also pay attention to the source ( even if you learn what NOT to do)
  5. Advocate for yourself and do what works for YOU
  6. They call it “practicing medicine” for a reason. Get 2nd and 3rd opinions.
  7. Surround yourself with positive people
  8. Learn to laugh at yourself

As I mentioned at the beginning, it feels like a whole different lifetime since I was diagnosed, (and it has only been 20 years) New ideas and treatments are coming out and being discovered every day.  Never give up!

If you are looking for a place to start your research, here is a link to the National MS Society.

If you need to talk reach out, send me a message, ask tons of questions. In the upcoming week, I have asked 3 other bloggers with MS to share their stories on this page, and or to share their advice about what does and doesn’t work.

This Best of luck to you on this journey!

 

 

Plan for the worst, hope for the best

Last week, as I was planning for the rough road ahead, I wrote and scheduled several blog posts in between packing.  ( I really do have a lot of shit…smh)

I  believe in planning for the worst while hoping or planning for the best.  ( I assumed I will be too emotional and busy packing to focus on keeping up with my blog and maybe too drugged from surgery)  So, tomorrow I have a video post coming out about Advice for those newly diagnosed with ms and a video about how I was diagnosed with MS (previously recorded of course).  I have asked a few fellow bloggers to add their advice and stories as well in the form of guest posts during the following week.

The bloggers I have included have been more than inspirational to me during this “rough time” WHILE still dealing with their own MS issues.  Please come back and check out their posts, and if you have time their blogs as well.  If you know anyone that has MS or another chronic illness, these guys are GREAT sounding boards and examples of how to make it day to day with MS.

Let me repeat, I AM NOT LEAVING THE BLOGGING world, I just don’t want to set myself up for failure or lose any progress I have made scheduling posts etc.  I have met so many wonderful people here in the blogging world (one positive addiction) that I know I will  be checking and responding to comments.

AND…. On the positive side, Thing 1 is getting married on March 10th, family is coming in from out of town, my Boston Trip is coming up…busy busy busy 🙂

Please check out my post and videos that are coming out tomorrow, and if we aren’t able to “Catch up” ENJOY YOUR WEEKEND!!!!!

The Elephant in the Room

I have never really written about “the elephant in the room”  (My relationship with Einstein), because to call it complicated is a massive understatement.  Sure I’ve made passive aggressive remarks, such as calling him Einstein because he THINKS he knows it all, but I’ve never given a back story.

I have called Einstein many names over the years, the most recent name being Einstein.  I would like to talk a bit about other names I have used when referring to him as well.

The very FIRST NAME I ever called him was “OMG look at that GUY!”  (I was 13 years old and for me it was love at first sight.)  Over the years, I have called him honey, sweetie, baby, loml (love of my life), various bedroom names,  you name it.

More than my Baby Daddy.

When I was 17, he became my “baby daddy”…eww I hate that name, I don’t hate that he is Thing 1’s father, but the whole “baby daddy” thing doesn’t quite cover what he is or was to me.

As the years passed, the names I called him became less and less friendly…asshole, dipshit, HIS FULL NAME. and then finally my EX when we split.  (The first time, the second time, and maybe even the third time.)  Maybe by the 40th time we broke up, I think I just stuck with MY EX…. I don’t remember…the point is, we have been on and off again for 30 years.

We have been apart for years at a time.  I even had another child, got married, left my husband and again ended up with Einstein. All this time I have told myself that I do what I do because I love him.  All of  those years ago, I gave him my heart, and I don’t think I have ever gotten it back.

Our “current” back together has lasted for almost 7 years give or take a couple months if you count several days of not talking to or even being able to look at each other.

The problem is we are NOT good for each other, I daresay we are toxic to each other.  THERE I said the words…… so pack up and leave right?

Why isn’t it that simple?  Why do I make this so difficult?!?!?  I keep making excuses that I have no where to go.  I have too much shit to pack etc etc….well I will just wait until our daughter gets married.  Excuses excuses.  Logically I can say those words, they are just excuses Grace, so why does actually leaving make me paralyzed?!?!?

The thing is I do love him and I want him to be happy, but not at the expense of myself.  I have never imagined my life without him, and it scares me.  Actually it terrifies me.  But I am feeling it in my body.  I am feeling the effects that this roller coaster is causing in my ability to walk, to think, my sleep, and it has to stop.  I have started to view him as my Nemesis…..so here I am….

Packing My bags

As I begin to pack my bags, yet again, I wonder…. maybe he is an addiction? Maybe it’s not love after all.  Being with someone shouldn’t  drain you of all of your energy.  I am either on cloud 10 or I can barely move because I feel like my heart is broken and I can’t breathe.  Words like co dependent and narcissistic  seem to describe what I think/thought was love.  This has been “our song” for years… Pink True Love

Can I please get off this roller coaster now?