Attitude

sunset-summer-golden-hour-paul-filitchkin

I just finished reading a post on a blog called Fuck MS (you should check it out, by the way). When I saw the title I smiled and laughed, because that has been my attitude from day one. And when your are dealing with an illness or disability, attitude is everything.

When my body began to go haywire ten years ago, I knew something was wrong, but everybody I went to couldn’t give it a name, which was frustrating. As the process to figure out what this was continued, my imagination ran wild, and not in a good way. When my MRI came back and I learned it was MS, the verdict actually came as a relief. That sounds silly now, but when you think it might be something like ALS, Multiple Sclerosis isn’t bad by comparison.

Then shit started happening, and the slow erosion of my mobility commenced. Through it all, my reaction to each hurdle that presented itself was annoyance and defiance, not sadness or despair. I certainly wasn’t happy that my leg started feeling like an overcooked strand of spaghetti, but pissing and moaning about it wasn’t going to change anything.

I’ve always been good at compartmentalizing things going on in my life, and I’ve placed my disability in the attic, tucked away with all the other junk that I don’t have any use for. I hate the word disability or handicap, even though it applies, because I don’t want that to define who I am. I also don’t want people thinking of me that way. I’m still the same guy I was twenty years ago, it’s just that I walk funny now, have no balance whatsoever, and can’t do a lot of things I used to. Many of the things I can’t do, like yard work, I don’t miss at all.

I didn’t always have this attitude. I use to bitch and moan about a lot of petty things, and it took becoming afflicted with MS to realize how good I had it. Family, friends, and having love in my life was something I no longer took for granted. So now, I try not to sweat the small stuff, other than the Red Sox.

Granted, I still have full use of my arms, hands and the other leg hasn’t been touched. I still work full time, still drive a car, and still maintain the standard of living we had prior to the diagnosis. None of that has changed. I can still go for walks, although I’m slower than molasses and need a cane, a brace that lifts my foot, and a knee brace.

I know statistically that there is an excellent chance I will wind up in a wheelchair some day, and I also know I won’t be happy should that day come. In some ways I am trying to prepare for it, particularly in terms of housing and career, which is the primary reason I have started to write.

Is that denial? Perhaps. Maybe my tune would change if I was in constant pain, or if more of my body was affected. But still, every day above the dirt is a good day. Having your glass half full rather than half empty is really important to not letting something like MS swallow you whole and take over your life.

As they say, ignorance is bliss, so I’ll continue living in this self-constructed cocoon as long as I can until something punctures it. Until that day comes, and I hope it never does, I’ll remember that blog title, and wear it like a shield of armor and honor: Fuck MS!

 

Zombie Land

 

Fog

Most medications or treatments available to you will have some kind of side effect. In my experience, some are worse than others. Here is a list of all the things I have either tried, have had done, or am currently doing, and how they have affected me. Disclaimer: this is how these affected me – everyone is different. Your physician will guide you.

PILLS:  Ampyra: I took this for 90 days and stopped because it didn’t help me. There were no side effects.

Low-Dose Naltrexone (LDN): This is a compounded medicine that my current neurologist suggested years ago, and is the only pill I continue taking. Ironically, I stopped taking the drug four years ago because I didn’t notice any changes or improvements, and wanted to reduce my medical expenses. Two weeks later, I wasn’t getting around as easily and my foot seemed to drag more, so I resumed taking the pill and have never stopped. This is not a standard MS treatment. In fact, many in the medical community question its efficacy, but it has certainly helped me.  Anecdotally, the FDA has approved Naltrexone for the chronic treatment of opioid dependence and drug detoxification. Hmmmm.

SELF-ADMINISTERED INJECTABLES:  Early on, I took Betaseron for a few months, ditched that, then tried Copaxone. These meds have more of a proven track record for RRMS sufferers, but I tried them anyway. What did I have to lose?

I used the auto-injector, a gizmo where you load a pre-filled cartridge into the injector, position the tip flush onto the site, and pull the trigger, which releases the needle and dispenses the drug subcutaneously. I eventually stopped because they did nothing for me, other than cause bruising at the injection site and, in some cases, angry, sore welts. These occurred when I had the injector positioned at a slight angle into the body, I was holding onto the injector too loosely, or didn’t have it placed firmly on the injection site. The truth is I was never comfortable giving myself shots, particularly in the arms and the hips, which is where I screwed up most of the time. The stomach and butt were easier, primarily because there was more fat there and it didn’t sting as much, but if I did make a mistake on either, I’d be reminded for a few days every time I sat down.

SPINAL TAP:

Also called a lumbar puncture, this is a procedure where a needle is inserted into your spine and fluid is removed. A high volume of certain proteins in the spinal fluid means you have the condition. It isn’t fool-proof however, as 5 to 10% of people with the condition don’t test positive for the protein.

The main and most problematic side effect with a spinal tap, occurs when fluid leaks out and changes the pressure in the brain or around the spinal cord, causing a horrific headache. I was flat on my back for two hours before I was discharged, and was encouraged to lay down for most of the day upon my return home, in addition to drinking a lot of water. While I was resting in the hospital following the procedure, a nurse told me the headaches didn’t occur frequently, and fortunately I was not the exception.

If you are thinking about having this done, my only recommendation is to have the procedure done at a hospital. Not a doctor’s office. My appointment for the procedure began at my first neurologist’s office, where I had to tuck myself into a tight fetal position while he attempted to draw fluid. It was not the most pleasant experience in the world, and was compounded by the fact that he did not succeed in drawing any fluid after four attempts. Each new attempt was more uncomfortable than the previous one. I was not a happy camper, and I think he knew better than to suggest a fifth try. Instead, I went to the interventional radiology department at the hospital across the street from his office. They had me lay on my stomach, positioned the needle with the help of a computer, and got what they needed in about thirty seconds. I didn’t feel a thing.

STEROIDS:

I’ve received monthly infusions of solumedrol, a steroid, along with other IV agents I’ll mention shortly, for about eight years. As I mentioned in my previous post, the impact after the first three-day home treatment was remarkable. As I also mentioned, I had to deal with an uncommon and miserable side effect that caught me completely by surprise: hiccups.

You might wonder, what’s the big deal? Well, these little bastards started on day four, became chronic, and lasted for three long days. I’d get a brief respite, then they’d resume and last for hours. I didn’t know what to do and, like a dumb ass, didn’t bother to call my doctor. I just suffered. At first it appeared that eating helped them subside, so I gorged myself. That turned out to be a dead end. All it did was make me feel like a fully inflated basketball had settled into my stomach, which made the hiccups feel worse. I’m not taking about one hiccup at a time either. As the days progressed they would come rapid fire in threes, fours and sometimes fives. I talked little, and felt like a freak at work. Sleeping was next to impossible, and I felt utterly helpless.

Even now, when I get infused with one gram of the stuff each month, I have to deal with hiccups the following day. They start off slowly then pick up steam as the day progresses. It’s just something I have learned to live with. Fortunately, they aren’t as chronic, and are gone by the time I go to bed.

One other side effect is ravenous hunger, which lasts up to the time the hiccups start, so I guess they are good for something because the last thing I feel like doing when I have hiccups is eat.

I can’t speak for the long term effects of repeated steroid use. What I can tell you is that a dear friend, who suffers from Crohn’s disease, has been taking prednisone for over fifty years. He currently has a host of joint issues, and the wall of his heart has thickened. He has no regrets, however, because it was either deal with the pain or have a decent quality of life. I feel the same way, but wonder if the steroids will come back to bite me somewhere down the road.

CHEMO DRUGS:

In addition to the infused steroids, I have also been receiving a chemo agent called Cytoxan. When I first started taking it, I was in bed for two days. My body apparently got accustomed to the drug, so now I’m in Zombie Land for only one day.

When I get home on the day of the infusion, I’ll feel a little fatigued. The next day I’ll wake up feeling pretty good, but as the day wears on, the fatigue settles in for an extended stay, and my face looks and feels like I’ve been in the sun all day. I’m the stubborn sort, so I plow through the day and try to be as useful as possible before giving in on day three.

It’s hard to describe what day three feels like. The analogy I’ve come up with, is that it feels like a fog slowly rolls in, then descends in full force, enveloping me in a shroud of dazed lethargy. I call it Zombie Land because that’s what I feel like. I don’t drink or eat much, and have no desire to do anything. My body feels like a wet dishrag, my mind feels like I am beyond stoned (and not in a good way), and this lasts all day. I sleep a lot, and when I am in the deepest regions of Zombie Land, the dreams are bizarre.  A repeated one involves me being in my bedroom, and I am awake. I’m woozy and can’t tell if  I am dreaming or not. Then, I begin to levitate above the bed and hover there. I eventually realize I am dreaming, but it still feels very real. In fact, all the dreams I have when I am in this state feel very real, which is great if it’s a good dream, but sucks if it isn’t.  On day four, the haze has lifted, and I feel burned out, like I’m coming off a bender, but without the headache. By the time I get home from work, the burnt out feeling is gone, and I’m simply tired. Everything is normal the next day.

I can’t imaging what cancer patients have to go through. I only get 600 milligrams of the stuff and feel like crap. Thank God they give me some anti-nausea meds during the infusion because I wouldn’t want to have to deal with that too.

I just started a new drug last Friday called Orcevus. On par, it was a slightly better experience compared to the Cytoxan. I receive a smaller dose of steroids, which meant no hiccups at all, and that was wonderful. The fatigue on the day of the infusion was a little worse but infinitely better the following day, although the sunburned feeling remained. On the third day, Zombie Land arrived early and hard, and stayed that way most of the day. I slept more than usual and still felt semi-comatose by the time I finally went to bed for the evening. The burned-out feeling the day after the zombies left town was minimal.

If you’re keeping score, day one was a wash, days two and four were better, and day three was worse. I can live with that, and the best part is I will only have to do this every six months instead of every month, once my initial course is over (I get a second dose next Friday). Having said that, the Orcevus I received was half the dose I normally get with the Cytoxan, because the protocol is to split the first dose two weeks apart.  It makes me wonder how bad Zombie Land will be when I get the full 600mg dose in March, or how long I will reside there.

Plasma Apheresis

I described the plasma transfer in my previous post, so I won’t describe it here. As far as side effects are concerned, there aren’t any, at least not for me. But what I don’t like about this procedure, or any of these procedures for that matter, are the needles and tape.

First of all, when receiving an infusion of steroids and/or chemo, there is only one needle used, and it’s a fairly small one. Sometimes, you hardly feel it going in. With this procedure, two needles are involved, and the second one is bigger because it has to handle the volume of blood coming out of the body without popping out. I exaggerate by calling it a sewing needle, but sometimes it feels that way going in. They also don’t stick this needle deep into the vein like they do for the infusion needles, thank God. It typically goes into the big vein in the crook of the elbow, and it has to remain in position in order for the blood flowing out the body and into the centrifuge to remain at a constant volume. This means that if for some reason it moves, or the flow somehow gets disturbed, the nurse has to remove the tape and fiddle with the needle, i.e., move it around while it is in your vein to get the flow going again. That makes me break into a cold sweat.

The other issue I have with needles is that sometimes the vein looks good but flattens out when the needle is inserted, which means they haven’t hit their intended target. When this happens the needle will get moved around to see if they can get any blood. If that fails or hurts too much, the needle is removed, a new one is retrieved, and you get stuck someplace else.  My record for needle sticks for a single procedure is six. That happened only once, during the time when I had three plasma transfers done in a two week span. By that time there weren’t a lot of places to choose from, and my arms were starting to look like raw hamburger. Good thing it only took six, because there wasn’t going to be a seventh. There weren’t any other places to try. The IV nurses usually get it right the first time, but everyone has a bad day.

The tape, and specifically its removal, hurts more than anything else. A lot of tape with strong adhesive is used to secure the needle in place and to prevent it from moving. As you can see, I have a lot of arm hair. So when the tape comes off, it hurts like hell. I’d prefer that the nurse just rip the damn thing off and get it over with quickly. Unfortunately, the tape is removed slowly and carefully so that needle doesn’t get yanked out haphazardly. It feels like each hair is being plucked out individually before they get to the point where the needle and rest of the tape can be quickly removed.  Not fun.

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I’m tempted to get my arms shaved or waxed, but that would not be a good look. This is the primary reason that my favorite place to have a needle inserted is the top of my hand. That sounds awful, I know, but there is no hair there, and I can move the hand freely without feeling the needle in it, unlike other places. Plus, having the needle placed there doesn’t hurt any more than any of the other spots. You just assume it will because the skin is tighter, and there isn’t much meat there.

Words of advice

The key to having plump, juicy veins that your nurse can pierce with one stick, is to hydrate, and coffee doesn’t do it. Drink as much water as you can before your procedure, and this will go a long way towards ensuring you won’t feel like a pin cushion. The only caveat is that if you are having the plasma transfer done, you’ll have to walk a fine line with water intake because once the machine is turned on, you can’t get up.

The arm with the big needle shouldn’t move at all, otherwise the outgoing volume can change, which means the needle gets moved around. So the goal is to drink enough to get your veins plump, but not so much that you can’t hold your bladder for the hour and a half procedure. Otherwise, you will have to ask for a hand if you need to pee. Literally. Besides being embarrassing and a little messy,  it could also result in the big needle getting dislodged or moved.

Medical Marijuana

I wish I could should share this experience with you, because I am definitely curious. I’m itching to get into one of the dispensaries in Connecticut, where it is approved for MS, see what they have to offer, and learn if you catch a righteous buzz from the stuff. Alas, I can’t because I haven’t had the experience. Not that I’m bumming, because one of the things it manages best is one symptom that is very common for people with MS, but one that I have fortunately managed to escape so far: pain.

 

If you wish to share your experience with anything I have mentioned or, preferably, anything I haven’t, please leave a comment.

 

 

 

Meds and Treatment

IMG_0312One of the first items most of us have to confront is how we are going to treat our condition, most of which involve drugs of some kind. The most viable options are predicated on the type of MS we have.

I tried virtually everything in the beginning. Even though interferons aren’t designed for primary-progressive (PPMS) folks like myself, I tried them anyway at the suggestion of my first neurologist. Sticking myself with needles several times a week wasn’t the most natural thing in the world, and I developed a better appreciation of what diabetics must endure on a daily basis. I didn’t do this for very long because it didn’t help me.

Next up was a three day course of steroids infused intravenously at home, and afterwards I thought I died and went to heaven. My symptoms, which were minor compared to what they are now, virtually disappeared, and I felt like I escaped from prison. Unfortunately, the relief lasted less than two weeks, and the symptoms slowly re-appeared. I also developed a little-known side effect that sounds trivial but proved to be one of the most trying experiences of my life. I’ll elaborate on a future post about side effects. Also be aware that you will have a port attached to your arm during those three days, so all you have to do is clamp new IV tubing into it rather than have to insert and affix the needle each subsequent day. You can’t get the port wet or it could cause an infection. So no swimming, and you will also need to wrap your arm in plastic wrap when you take a shower to keep it covered and dry.

One last word of advice. If you do the three day home treatment, listen to the nurses’s instructions, particularly the part about putting immediate pressure with a sterile gauze on the site when you remove the needle. My third and final dose was done early on a Monday morning, before I went to work. I was a up exceptionally early that morning so I could finish the treatment, which takes about an hour. Given the hour I wasn’t thinking very clearly, and forgot the part about applying pressure when I  removed the needle. What a mess! For the few seconds it took for me to realize what I forgot to do, blood spurted all over the place. It made one hell of a mess, and looked like a scene from a slasher movie. Good thing my wife didn’t see it. She hates the site of blood.

Soon thereafter, I started monthly infusions of steroids and cytoxan, which is a chemo drug. When my current neurologist suggested it, my first thought was, “are you kidding?” But MS is an auto-immune disease, so theoretically the drug helps the progression by compromising your immune system so it stops cannibalizing the body. It must work, because while my progression has not stopped, it has been slow and remains confined to one limb. I also assumed that since I would be taking this shit, I would catch every cold, virus or bug that I came into contact with. However, since that time I have been remarkably healthy. Strange.

Plasma exchange (plasmaphersis – see photo) got added to the equation a few years ago. This is a process where needles that are connected to  plastic tubing, are inserted into a vein in each arm. The blood exits your body through one arm and enters a centrifuge, which filters the plasma that contains the antibodies that attack the immune system.  The good plasma or a plasma substitute (in my case, Albumin) is returned to its host via the other arm. It’s very similar in concept to kidney dialysis. When I first started my infusions, they were done in the apheresis center, where I first saw patients getting the treatment hooked up. The process looked uncomfortable, medieval,  and swore I’d never consent to it. Now it’s old hat. In the beginning I had three of these treatments done over a two week period and the results were similar to my first steroid gig: a significant improvement. However, like steroids, the improvement was short-lived, and now I get them monthly in addition to the other infused meds to maintain the status quo.

I haven’t had these infusions for over three months now due to a kidney stone issue I had to deal with. Previously, the longest I had gone between treatments was six weeks.  During this time my walking has become more cumbersome and my balance is worse than it has ever been. I resume treatments tomorrow (with a new drug this time) and I’m expecting the symptoms will revert back the the level they were three months ago. If not, I’m screwed.

The drug and treatment options are numerous, but the bottom line is they involve pills, needles, expensive procedures (thank God for good health insurance) heavy duty drugs, or a combination of them. I’ve only covered what I know, and haven’t scratched the surface in terms of the meds available. Your neurologist should be able to explain what he or she thinks is best for you, and explain the pros and cons in detail. Don’t make the mistake of not asking questions.

Diet, exercise and other holistic means can’t hurt, but we’ll talk about those at a later time.

NEXT POST: Zombie Land

 

 

 

Welcome to my blog

cropped-welcome.jpgMy name is Steve, and I was unexpectedly afflicted with MS ten years ago. It came as a complete shock because nobody in my family ever had it, and no warning signs preceeded the day the first symptoms appeared.

My goal is to enlighten those of you who may have a family member or a loved one who has the disease, or to provoke a smile, a laugh or a nod of understanding for anyone who, like myself, has to cope with the aggravations, inconveniences and embarrassments that our symptoms thrust upon us.

One word of caution: I am not a technically savvy individual. I don’t have a smart phone yet, although that will change soon, and until recently I have not been plugged into the social media scene. My computer skills are very limited at best, so I am sure this site will experiences a number of changes, some unintentional, until I am happy with the final product.

I want to share the experience of what it was like to have lived a perfectly active and “normal” life for almost fifty years before having to cope with a disability that changed everything, including my perspective. I hope you enjoy the ride.

 

NEXT POST: Meds and Treatments