PLAYING FOR KEEPS

“If you want something bad enough you will find a way to get it.” 

One of the many things my daddy, a brilliant man, once told me. He was right about that and countless other things in my life. 

One thing I wanted more than anything as a child growing up in the 60’s was to play piano. As luck would have it, I lived next door to a music teacher, Ms. Long who played and taught everyday and sometimes twice on Saturday. I wasn’t your average kid. I rode bikes and played kick ball in the streets sure, but when that piano began to play, the world stood still for me and I heard nothing but the sounds of Chopin and Floyd Cramer for hours on end. I would sit on my steps and just listen. I listened to every note, every key, every flat, and every sharp. I practiced in my head over and over and then over again. See, I didn’t have a piano, and my chances of getting one were slim to none. We were extremely broke. It was the 60’s. We were a one income family. So many other things were needed. A piano? It was laughable. Ms. Long was my friend even though some in the neighborhood said she was insane. She shared my love for music and she understood my need to play. I will forever be grateful to her for opening the flood gates to my musical world and being the first to allow me to explore those ivory keys I longed to know. 

There I was in my 20’s, playing any and everyone’s piano I could find. I never had the first lesson but I could play by ear which some people say is a raw talent. I didn’t know what that meant except I was able to play anything I wanted after hearing it a couple times. I played church songs, wedding songs, rock songs, even an occasional sappy love song. People I knew complemented me and I just thought it was an OK thing to do. I started asking Santa for a Baby Grand as a joke at 26 on a dare from a friend. I have stood in line every year for 26 years asking for the exact same thing. What started out as a joke turned into a tradition for my children and I . And I plan to continue this with my grandchildren as long as they believe in Santa.  I bought an electric keyboard at 26 and thought this is as good as it gets.  In my heart of hearts though, I still longed to own a piano of my own so I could practice every day. How awesome would that be?

At 30yrs old, my father passed away and my world crashed and burned with me inside. I was devastated. He had loved to hear me play. I would never be able to play Nat King Coles “Mona Lisa” again. I couldn’t bear the thought of playing “The Tennessee Waltz” without looking into my dad’s blue eyes. Who would I play for now? The phrase “the day the music died” had more meaning to me then more than ever!  It took me awhile, a long while,  but I decided to pick back up for him because every time I sat down at that keyboard I would remind myself, “If you want something bad enough you will find a way”.

So I kept playing that keyboard and bought 3 others in the years to come, each a little bigger, each a little better. I was still not quite satisfied though. I was finally able to afford a real piano in 2006, a used one, from a music teacher who was going into a retirement home and couldn’t take it with her. Very sad story but I promised to take good care of it and that I did. I played my heart out, every day. I played for family, for friends, for anyone that would listen. This past January, I had to part with my beloved piano because it needed more work than it was worth. Between the teacher and myself, the keys had become loose, some needed replaced, a good tuning was in order, and it would be several hundred dollars to repair. My intentions were to sell it and take that money and get a newer one. Our intentions never seem to work out though do they? 

My MS had progressed to the point that my tremors kept me from playing in front of anyone. I would get so embarrassed when I missed a key or would hit the wrong one  but I kept trying. When I was alone in the house I would play like there was no tomorrow. I am hoping to get another one someday. Although I never did learn to read notes I could play anything just hearing it a couple times. And the amazing thing is I’m pretty sure my youngest grandson has inherited this talent. He certainly has rhythm and a love for music and thinking back that’s all I had. 

MS has taken so much from all of us in the form of independence, confidence, self worth, and definitely has affected our ability to do the things we used to do before being diagnosed. But what I have to keep remembering is that shy little girl sitting on the porch steps listening to those beautiful ivory keys and I know in my heart I will continue to play because it will never take my spirit or my desire to one day make Ms. Long proud of her star student. 

MY COLUMN THIS WEEK IS ABOUT THE FACT THAT I'M SORRY IVE BEEN MIA BUT MY SHOULDER SURGERY AND REHAB ISN'T GOING WELL

Well surgery I guess went OK but getting over it has been a struggle! I'm still having a really hard time.

Went BACK to the dr Friday because of the UNGODLY amount of pain I'm still having and their answer was...wait for it....you aren't taking enough pain medication! 

Hahaha I've never heard that one before! I made her repeat it incase I misunderstood.

And she's right, I DONT take a lot of drugs because I'm not an addict and kinda don't want to become one. 

Her theory was stop the pain before it starts. Well, that's kinda impossible since it never stops hurting. It's like a toothache. They did give me an anti-inflammatory which worked miracles but my tummy hated it! I had to stop and the pain began again with a vengance. So, that's where I've been. I've missed you guys but I'm trying to get better. Could use some of those famous Stan hugs and Angels feel betters if there are any to spare.

Love you all!!
Cindi

One of the worst things we have to face having MS is those days when our balance is not quite right

I've written 9 columns for you.
Click my photo on far left side
of this page to read them

 We all know the days, when we wake up and the whole room starts spinning and we feel like we've had a little too much to drink but actually we just got out of bed. The fancy name for it or technical name for it is vertigo. I just call it a bad MS day!

The end of January 2013 I had one of those days. I had gotten up and barely could make it to the bathroom. I tripped and fell landing directly on my left shoulder. The pain was excruciating and I just knew that I had dislocated or worse broken my collarbone. When my husband got home from work that day I was in tears.

Now you all know people with MS suffer in silence most of the time so therefore when we do hurt and it's visible to the other person it's kind of scary! I think my husband was kind of freaked out. He wanted to take me immediately to the ER but of course I refused to go. I failed to
mention we’re also a little stubborn too. By the end of the next day, I was in so much pain I didn't argue with him or anyone else. I ended up going to urgent care and was very glad I did. They sent me to an Ortho specialist who did a series of X-rays, MRIs, etc. After all the testing was completed, we found out I had torn my rotator cuff. The only way to make it stop hurting was surgery. I was so excited! NOT!! The doctor did suggest a series of steroid shots that may or may not help, so I was willing to try those first.

Jaimi gave me hope. Something I had lost

Jaimi & Me

 Cindi Hopper, Columnist, MSnewsChannel.com
Jaimi and Me

Of all the things I had to inherit from my father, bad veins had to be the worst thing he could have given me. I certainly was hoping for some secret stock or bonds that no one knew about that matured when I reached the age of 21 or maybe 35. Or maybe a nice lake house on Lake Lanier with a boat dock and boat.  Never in my wildest imagination was I prepared when I was told at the ripe old age of 30 that I would always have a problem with blood flow.

Of course at that time, I didn’t think I would ever have the problems I have now and be requiring an IV all the time either. So a big shout-out to Dad, Thanks, first and foremost.

It seems tiny veins run in our family. My aunt Christine, dads sister, bless her heart (we say that a LOT in the south) had a horrible time getting “stuck” and also my cousins on that side of the family as I found out later too suffered with the same condition. I have wondered many times if this is related to or has amplified our auto-immune disorders.

I trip over flat surfaces, what’s your talent? I got the chance to experience some of that “tripping” this past week while I vacationed in Oregon

 (Cindi Hopper, Columnist, MS News Channel)
“I trip over flat surfaces, what’s your talent?”  I know we’ve all heard or said that before but when traveling, especially long distances with a disability, that phrase takes on a whole new meaning.

I got the chance to experience some of that “tripping” this past week while we (I) vacationed in Oregon. Let me elaborate. My husband had to fly out on business and since I LOVE the west coast and had visited Oregon before I jumped at the chance to tag along. I forgot for a minute the last time I flew not to mention actually

PHARMACEUTICAL HEAVEN: I'VE TRIED AVONEX, REBIF, BETASERON, COPAXONE, IVIG & NOW I'M GOING ON TECFEDRA

Being diagnosed with Multiple Sclerosis is scary enough, but when they start offering all these medicine options at you and the side effects, it can be somewhat overwhelming! What you have to keep in mind is everyone is different and your body chemistry is going to be different than “Susan’s” body chemistry. Your stage of MS may or may not be the same as “Phil’s” stage so obviously you are going to react differently to the drug. What you can rely on 100%, and its full proof is experience. Every MS’r has a treatment journey. If you listen to that journey cautiously and only take the experience from it, it may help you in deciding which direction you want to go in your own treatment. So I want to share my journey with you in
hopes you may or may not take something away from it. When I was diagnosed, I had no idea what MS was or what it could or would do to my body. Like any scared 44yr old, single, professional, “made it on my own” female, I Googled it. BIG mistake! Holy crap! Talk about terrified. I needed to plan my funeral, update my will, and have a family meeting.  *Note to self- No more computer research!
I saw every awful thing there was to see, every horrid image, every side effect from every medication, but what I didn’t see was a cure. Talk about scared! I went to Barnes & Noble and spent money I should’ve spent on new shoes on books about MS.

My neuro decided to put me on Avonex and I reluctantly obeyed. I will never forget that first shot. I had my best friend with me for support and she had a bottle of Tequila for her support because she hated needles. She completely passed out when I took out the package of instructions. What a champ. I would take the shot on Friday night around 6pm and the side effects would start sometime in the early morning hours around 1-2am. I literally laid in bed all day Saturday & Sunday feeling as if a truck had hit me.

I was single then and had zero support from family. I remember one of them asking “Why are you doing this to yourself?” Oh I don’t know, I like feeling like I’m about to die? I had literally no one!! I was in this fight all by myself. I was still working then too. So I would drag myself up and out of bed on Monday, drag is the correct word, go into work, sleep thru lunch, go home, sleep, do it again Tuesday, by Wednesday I was feeling almost human again. Thursday was my “Good” day except that’s the day depression would creep in because I knew I had 24 hours until the cycle began again. It was horrible. I did this for almost a year. 

I was suicidal as you can imagine and was feeling no better physically. I was hearing all kind of negativity from family members, nothing positive. I felt like I was alone in the desert with no rain or water in sight. It was the most miserable year of my life! Now keep in mind. THIS IS MY EXPERIENCE!! Everyone doesn’t re-act the same to this drug! There are people who do very well on it and have for years. That’s the thing with the MonSter. It affects us all so differently. If we were all affected the same it would be easier to cure the beast!

So I call my beloved Dr. told her of my dilemma and she immediately changed me to another interferon Rebif. I tried that for three months then Betaseron, also a no go. So we determined interferons and my chemistry weren’t a mix. I then went to Copaxone, an everyday injection. That worked well for over a year until I had an allergic reaction to it.

Trust me, you may think that little EPI pen that comes in your pack of goodies is for show and tell, but know where it is at all times when you are injecting a substance into your body that isn’t normally there. Had I not had it that day I truly believe I would have gone into anaphylactic shock and quite possibly died. Apparently I had built up immunity to Copaxone so it quit working and my body all of a sudden rejected it, no warning, no flashing yellow lights, no buzzers, nothing! Just the swelling of my tongue and the closing up of my throat and I heard the fat lady singing!

Thank God for my Epi Pen and 911 obviously. After that incident, I wasn’t sure what options were even available for me. I thought I had tried them all. I had heard of a treatment called IVIG or Intravenous Immunoglobulin not yet approved for MS but was being used and experimented on people with MS. I asked my neuro about it and she told me the risks, the costs which where astronomical, and said if I wanted to try it she could get it approved through some clinical study. Well by this time I was ready to try anything. This was November 2010 and I spent a week in the hospital because my body didn’t like it either. I decided to go la-natural since that time other than the occasional IVSM that I have to have for the flares and of course the meds I take for fatigue, sleep, pain, etc. I had decided until they came out with a cure, a real cure, I was going to be “super-girl” and weather the storm.

Well that was three years ago and we aren’t any closer to a cure then as we are now but we do have several new meds on the market, Tecfedra being the one next in line for me I think.

I know I am progressing and I truly want to believe there’s a drug out there that will help slow down this MonSter. Until we try them we won’t know. So In a couple months, maybe sooner, I will embark on the Tecfedra journey.

I’m hoping to bring you day by day, week by week non-candy coated updates on this new and hopeful gate to our future.  LOOK FOR MY TECFEDRA UPDATES HERE ON STANS ANGELS OR IN MY COLUMN ON: www.MSnewsChannel.com

We shall see.

Some of my triggers for my migraines is barometric pressure change & we have flash flood watches for the past week

[Cindi Hopper, Columnist, MS News Channel]
Its after 3am here, twilight time, LOL. I always seem to wake up around this time for whatever reason...EVERY night! Even with colozapam. Im thinking my dosage isnt strong enough but my luck, shed increase it and Id sleep till 2pm the next day, have to take a Provigil to wake up and then that would become a vicious cycle I damn sure dont want to get in. Ive been having a rough time for about a week and yesterday had to go to the ER for a relentless migraine again.

Something is going on with them because they have just started coming back in the last 6 months with a vengence! I know one of my triggers for my migraines is barometric pressure change and we have flash flood watches here in GA for the past week.

Over 5 inches so far and 3"more expected in the next 48 hours. our
back yard is saturated, pool overflowing, and friends and neighbors have been kind enough to bring in pumps and equipment to help up keep it out of the outside buildings, Jrs shop, gameroom, etc...Im most worried about the pool though. We JUST replaced the liner 3 weeks ago to the tune of about $3500!! Along with all this rain, comes wind and broken limbs. Jr & I leave for Oregon Monday the 8th for his business (my play) trip haha, and cant leave without worring that our pool will be "green with envy" when we return!! YUCK! Once it gets out of control, its not only time consuming but WAY expensive to get a grip on. We have a guy keeping an eye on it and my roses, my prize possessions, while we are gone, I just hope the rain will ease off a bit before a lot of people start really having some issues.
Soggy ground=loose roots on trees=fallen trees on power lines & homes...spells disaster! Say a prayer for the southern states, Not just GA i think its effecting us all around.

My ER trip went well yesterday. Migraine was completely GONE until I sat up, then it slowly started coming back. I opted to go lay down insted of more drugs and probably should have taken the drugs but anyhow, I did sleep one I got home for a couple hours and could tell it was getting a little better. By 10pm it was back again, full force so I just went to bed with an ice pac and all my nightly meds. I woke up at around 3am and can tell (fingers crossed) its on the way out!! Just have to keep my neck really still and my water intake at about 80ozs today.

SEEING IS BELIEVING

The Human Race in general has a tendency to be somewhat cold, hateful, impatient, and least of all inconsiderate to those of us with disabilities.   I for one have had many experiences that have made my blood boil at first then the tears flow uncontrollably at how cruel the world can be because of this crazy disease I didn’t ask for. Taking it in stride isn’t an option when it happens repeatedly and you wonder where in the world people get their nerve.

One of my first experiences, years ago, was when I first got my handicapped sticker and was at the grocery store, alone of course. I will never forget it because, (A) I never thought I would have to use one of these things so I was already feeling a little helpless and (B) I was in so much pain from spasms the night before and didn’t have the meds I do now to control them so…

I pulled in to the HC spot, one of about 8 at the time, got out and started to walk to the door. An elderly man, about 75 approached me and said “Don’t look like you sick to me”. It caught me off guard and being from the south I thought I had misunderstood him so I said “excuse me?” He said it again except this time with more callousness and cruelty like he was trying to strike a nerve. Being newly diagnosed and what I like to call in my “pre-prozac” days, I stuttered, “well I am”. He just mumbled some southern mumbo-jumbo and into the store he went. I was so flustered, trembling, shaking, then tearing up. After all, I hadn’t asked for this stupid disease! I didn’t want this HC sticker anymore than this man wanted me to have it! I was so upset then the upset turned into madness. Being the little (5’2 ; 130lb) spitfire that I am, I went into that store, found that old man, and told him off in front of God and everybody! I’m pretty sure he will think twice before mumbling anything like that again. 

That wasn’t the last time it happened and its unfortunate people do not understand about invisible illnesses. They are real. They are painful. They are debilitating.  And they are disabling. There have been many times I’ve wished you could see MS. Even the support from family members has been minimal because, again, they can’t see it so to them, it’s not there. 

As our disease progresses and we are forced to use aids to help in walking, standing, etc. I’ve noticed people are far more understanding, patient and considerate. I started using a cane a couple years ago due to severe balance issues and falling. That was a big step for me as I’m sure it is for everyone. The day I bought my first cane I literally had a melt-down. It was like I was giving up some to the MonSter. But now I am grateful for each day that I have and have noticed people are far more patient and caring since they can actually see I need help in getting around.  Its just human nature I guess. You have to see it to believe it and you have to believe it to understand it. 

MIGRAINES + MS = 1 UNHAPPY CAMPER!!!!

If you’ve ever had a "Migraine" then you will know exactly what I’m talking about! Ah, the nausea, bright lights, vertigo, pain on one side of your head maybe in your eye...sound familiar?? No I didn’t describe a bad flare day but now that you mention it add some burning feet, pain in your arms, legs that weigh 40lbs each, UTIs and you got yourself a really fun day! 

For forty years, I’ve experienced the “joy” of all the above. Back in the day, before all the modern medicines, you went into a dark room with an ice pack and a trash can, closed the door and wasn’t seen or heard from until it passed. I think I spent most of my teen years in my room. All we had was Bayer Aspirin. Imagine that.  I was told it was hereditary, hormonal, growing pains, Iron deficiency, Devil Possession (because I listened to Pink Floyd & AC/DC) anything but the truth. There were no neurologists, no CT scans or MRI machines, so we suffered in silence.

As time went on and I grew up, married and had children, got jobs that I could not afford to be absent from, I started researching on my own why I was sick all the time. I went to every type Dr. available to try and help me. For years I made it my quest in life to “fix” my headache problem. I saw chiropractors, had acupuncture, reflexology, massage therapy, Indian Guru, the list goes on.  All in all, over 12 specialist in the “Migraine” field never gave me a definitive answer. They all just concluded I had “Migraines”. DUH

Now during this time, I didn’t mention my other symptoms. When I was 8 years old, I had a GranMal Seizure. Scariest thing a little kid from Georgia has ever gone thru I promise! Also, I would tell my mom that my feet burned and my legs went numb a lot. You guessed it. Growing pains. These symptoms persisted all thru adulthood and I wondered when I was going to quit growing? When I went to my first neurologist I think it was early 80’s I explained ALL this to him. Still no MRI but I did get a complete neurological exam and it was fine. Diagnosis: Migraines

The 90’s were my friend. GlaxcoSmithKline came out with a drug called “IMITREX” a new migraine medicine and my present neuro let me try it. OMG!! It was wonderful. I truly believe it saved my life. Those of you that suffer know what I mean because they take over your world. I was having 6 a month at least, the kind that last 4days each.  I was suicidal no doubt about it. So to them I am grateful beyond words. My faith was renewed headaches better, but numbness, burning, tremors, and now severe neck pain and blurry eyes had entered the picture. I saw 4 neurologists that all said possible MS but I called BS.  So back to the neuro I went, except this time, I chose a different one.  After a gazillion tests, (my favorite being the spinal tap), she DX me officially with MS on Nov 16, 2004. 

Looking at my history, and all my symptoms, she concluded the migraines I had suffered as a child were one of the first warning signs that I had MS. How sad we didn’t have the technology back then to do something. And even sadder the symptoms were ignored. They are controlled now by meds and I see changes every day in the development of new meds for migraines. My advice would be to discuss ALL your symptoms with your doctor so he/she can get a clear picture of how to better treat you. Oh, and I still listen to Pink Floyd and AC/DC every day.