Thank you for your support

February 25, 2018October 5, 2018 ~ msgracefulnot ~ 9 Comments

Earlier this week, I hope you saw the wonderful guest posts by Steve Markesich @ MSich Chronicles, Alyssa @ fightmsdaily, and Alex @ MS with Ms Alex! If you missed their posts or have not seen their blogs, please take a minute to check them out! These people are not only positive inspirations to those of us living with Multiple Sclerosis, but for me they have all become friends outside of the blogging world. Alex and Steve have heard my tears, and offered their support and encouragement on numerous occasions. Alyssa sends me frequent messages ‘just checking in’. It is SO helpful to know that you are not alone when you are struggling!!!!!

Hope for the best, but plan for the worst

Something that MS has taught me is to try to plan ahead…to prepare for the worst, while hoping for the best. I knew that this last week was going to be difficult for me: recovering from my own surgery, taking care of my father while he recovered from his surgery (which was cancelled and rescheduled), packing and moving, slump week, etc etc, so I reached out to my friends and asked them for “help”.

Asking for help is so hard

Even when I write about “not fun” or painful subjects, I try to keep things “humorous”. I didn’t want to feel as if I HAD to write something, so as hard as it is to ask for help, I am glad I did. (trust me if you were in my head with all the mood swings etc , you would block me, ignore me, or otherwise, cut me out of your life, so I decided to “remain silent”) I won’t claim that having my friends guest blog, helped me FOCUS, but it did allow me time to try to wrap my head around everything that is happening, and to start getting “shit” done.

Better than I hoped

While I knew that my fellow bloggers would not disappoint with their pieces, I was surprised at the things that I learned from their writings. I really wish I had Steve’s letter to himself (pre-Ms) when I was diagnosed. It really is great advice!!!!! Alyssa’s Guest blog about the things she has tried for MS reminded me that we are all different, and that MS really is a snowflake disease. (I’ve said it before, but it really hit home) You have to fight for yourself, and what works for me, may not work for you. Finally Alex’s post called the do’s and dont’s of MS, in which she shares how her “attitude” and sense of humor keep her going. Alex is not only determined not to let MS define her, but she kicks ass for everyone around her as well.

THANK YOU again my friends

Thank you! Not only for taking the time to share on my blog, but for making a place for me in your lives, and helping me get through this rough patch. I really did accomplish a lot, the worst events of the week were the alone time (when I was left alone with my thoughts)

BUT each day, I filled my car from floor to ceiling (hindsight says that was probably not the smartest way) and drove to my “new” place and unloaded my car. Some days I even managed a second trip.

To “keep things interesting”, let me add that this move is “double duty”. Before I could move anything in, I had to begin emptying and cleaning the things that were left behind including the the ceramic tiles and tub from a bathroom. But YAH, I am making progress!!!

The Do’s and Dont’s Of MS

February 23, 2018February 23, 2018 ~ mswithmsalex ~ 21 Comments

I start this with entry with the do’s and don’ts of MS. Pretty serious shit right? Not really I’m just kidding. I know I’m an ass, but thats my coping technique . Everyone has their own way of dealing. Mine is by being a jokester. Ya know putting a funny spin on a shitty disease is pretty therapeutic. So here I go…..

There aren’t any do’s and don’ts of MS. Everyone’s MS is different. I guess I should start with a little history and then go on to my way of dealing with MS the gift that keeps giving.

I was 34, I was a realtor at that point in my life. The market was at peak and I was cleaning up. Kicking ass and taking numbers. My boys was 14 and 12. I was married to the man of my dreams. I was walking in tall cotton as they say in the South.

Then suddenly one day my right arm started going numb. Hmmmmm curious. I chalked it up to a heavy purse. I’m known for carrying anything and everything in my big old purse. So I empty the purse and cut it down to the bare minimum. I cut it down to make up, money and my handi dandy knife. After all what hispanic gal would go about her day without a blade handy. Just kidding it was a Swiss army knife. Problem solved right? So I thought. It didn’t help. I went to my GP because the numbness was spreading. I also had a rash at the base of my scalp. A couple of weeks prior I had gotten a tetanus shot for a cut and experienced flu like symptoms. So my GP sent me to a neurologist. That neuro thought I had a basal migraine. I wound up finding another Neuro after several months of no real answers and a ton of crappy meds that didn’t help. By that time I was completely dead on my right side and I was dragging my right leg. The new neuro did the necessary test and came back with a diagnosis of MS.

I knew nothing of this disease. I was scared shitless!!!! As I’m sure most of you have been. Long story short I educated myself. Stayed on top of the different research etc. In other words I took as much control as I possibly could. The other thing I did was I didn’t wallow in self pity. I pretended for many years to be A ok. Ya know what? I was A ok to a certain degree. But I wasn’t completely honest with family and friends. I didn’t let them see the struggle for what it was. In my case it kind of hurt me because no one really knew how to deal with me as my disease progressed. My bit of advice on this subject is tell people the truth. Tell them the struggle when you need to but don’t, I repeat don’t get lost in this disease. Whatever you do don’t let this shit consume you!!! Speak your piece and then move on.

I went to different MS meet ups etc. These functions depressed the shit out of me. It was a bunch of really sick people gathering to complain. Both the women and the men appeared to have lost all will to live. I was like WTH? I’m not like these people. I still put on my make up, did my hair and dressed snazzy. I refused to let MS steal my sparkle and shine. Whatever you do being a guy or gal continue doing the stuff you did prior to MS diagnosis. If you did your hair and make up before please continue to do so. If you played Basket ball, golf or other sports prior to dx please continue to do those things on good days if you can. Don’t fall into the I’m too sick to do anything. I don’t primp or play golf on bad days but you can damn sure bet on a good day I’m doing all the things I love.

Don’t lose YOU behind being sick. YOU ARE MORE THAN MS!!!!!!

With all that being said I also encourage a healthy diet and exercise. I don’t recommend any particular diet because in my case Ive tried many different MS diets. None have worked for me. I still progressed. Some people I know do certain diets and manage quite well but in my opinion there is no cure diet. I do agree that what we put in our body is important but to say a diet cured someone of MS is ridiculous. I personally think that people that claim they have been cured of MS from a diet probably have a mild form of the disease. But thats my opinion. Do as you wish. We all need to do our own thing to see what’s a good fit.

Another piece of advice is make sure you find a dr. that you feel comfortable with. I’ve been through several. Don’t let a dr. bully you. Your fears are valid. Your symptoms are real. Don’t let anyone make you feel crazy just because they’re not familiar with your particular situation. Always remember you are paying them NOT the other way around! Be your own patient advocate. You have a mouth and a voice a deserve to be heard!

My last bit of advice is to stay as positive as you possibly can. Always remember it can always be worse. Don’t concentrate on what might happen, concentrate on whats going on right now. Life is full of what if’s that never actually happen. My dr’s have told me over and over Id be in a wheelchair years ago. Even the last dr. I left insisted i’d be in a wheelchair in a couple of years. I’m not! I do go between a walker and a cane. But I will rehab again just like I have over the past 14 yrs. I still walk, garden and play golf when I feel up to it. I’m not letting some dr. dictate how I view my disease.

I do admit my life has changed drastically, I had to leave a career I loved and lost the ability to drive for the most part. But i’ll be damned if I lose ME. I’m still Alex the cussing, silly, life of the party. I’ve learned to take things slower and rest when need be.But I never lost ME. Please don’t lose you. We’re all here for a reason. Make it count!

Some get angry because of this illness. I’ve been sad and stressed and disgusted with my progression over the years, but at the end of the day I’m grateful for the true appreciation I have for the little things. What gave me this appreciation you ask? MS thats what gave me this appreciation. People walk through life perfectly healthy and don’t have the appreciation I have for the little things. You can make your life a positive experience or a negative one. That is purely up to you. Appreciate what you do have, there is someone out there wishing they had what you have.

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

Please put more on my plate?!?!

February 18, 2018February 19, 2018 ~ msgracefulnot ~ 8 Comments

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.

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.
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)
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
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)
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