Tag: life

Too Good To Be True

When you live with MS, needles, meds and infusions often become part of your life. It sucks, but you learn to live with it. 

In my case (PPMS), I’ve been getting infused with various medicines and have made monthly visits to the hospital for plasma transfers (apheresis) treatments and a variety of infused meds for almost 15 years. Recently it felt like I was reaching a point where I wasn’t getting as much benefit from these treatments as I used to, and my mobility, strength, endurance, and ability to stay positive were taking a nosedive.

I’ve been reluctant to add to my current regimen because I’m tired of needles, of feeling like crap after these treatments, and tired of going to hospitals to get them.  But my regression was real and I thought maybe it was time to try something else.

My neurologist had been suggesting I try something called Intravenous Immunoglobulin infusions (IVIG) for a couple of years, but I had resisted because I didn’t want more needles and doubted it would be effective. But given where I was, I figured I’d try it and see what happens. And if this didn’t help, I’d give up trying anything different. 

Well, what do you know? The effect of the IVIG was amazing. I had it infused over three consecutive days, and within days of the last infusion my leg was stronger and my balance was better. I didn’t need a cane in the house and found it easier to navigate the outdoors with one. I was dumbfounded.  It felt like my progression had regressed, to where my body was ten years ago. And the improvement didn’t abate two weeks later! 

Too good to be true? Unfortunately, yes. A problem developed I tried to ignore but couldn’t. I was developing a rash that was ugly as sin and itched like hell. I visited a dermatologist who recommended I take prednisone for a few days.  The prednisone took care of the itch, but not the rash. By now I assumed the IVIG caused the rash, and I had another infusion scheduled in less than two weeks. Talk about a dilemma!

But then I started rationalizing. The rash sucked but it wasn’t that bad, I thought. And the itch was under control. I was loving my new-found strength and the fact I could do things more easily than I had in years. So, I said fuck it, and proceeded with round two, only this time I reduced the treatment from three days to two, and pre-medicated with prednisone.  As I was getting prepped for round two, I told the infusion nurse what happened, showed them the stuff on my belly, and asked them if they ever heard of this or seen it before. He said he did not. 

Three weeks have elapsed since then and I am sure of two things. The first is that the IVIG has no doubt been the most effective treatment I’ve received in terms of reducing my symptoms, and increasing my strength, mobility, balance and self-confidence. 

The second is I can’t take the med they gave me anymore and it is pissing me off. Why? Because the rash became more widespread. It is everywhere except my face, groin and butt.  What is odd is that the rash looks different on different body parts, and different areas itch on different days. I have red blotches on some places that look like bug bites. I also have spots that look like scabby red warts, cigarette burns, raised welts, and a nasty blotch covering most of one instep that looks like a combination of herpes and a shanker (see opening photo). Oddest of all, the skin on my palms look like dry, scaly, peeling calluses. The bottom line is that is has royally fucked up my skin. 

My PCP told me to stop taking the med, and that if the drug caused this mess, it would eventually disappear. But he also said that if it isn’t gone by the end of June to come back and he would biopsy it. Biopsy?!

I am tired of looking at the rash and the itch is driving me nuts! Taking steroids every day is not sustainable, so I will be getting another plasma transfer, which I skipped last month, in one week. Hopefully it will remove whatever remnants of the drug that remain and get rid of the rash without making things worse so I can think about next steps. If it persists then I guess my PCP will do a biopsy. I am not thrilled with that idea but am resigned to it because nothing has disappeared and there are areas that recently developed that look like a bruise. 

Meanwhile, I need to discover if there is a different IVIG drug I can use, but I’ll research the potential side effects this time. I ‘d love to find one that provides the same benefit but without the rash, or some other nasty side-effect, but I’m not optimistic. At this point I would be happy with having normal skin and a negative biopsy.

Pulling the Plug

I’ve been working since I toiled in the tobacco fields of Connecticut when I was fourteen, sweating my ass off in the scorching summer sun under cheese cloth nets. My first “real” job occurred three years later when I obtained summer employment at the Hartford Hospital Business Office. Little did I know this would be the catapult for a career in healthcare revenue cycle management that started shortly after college and spanned forty-nine years, eight employers and three states. I’ve been with my current employer for over seventeen years.  

I began to seriously think about retirement a few years ago, but the thought of living without a paycheck can be intimidating, not knowing how long the money you accumulated for retirement will last, or how much monthly expenses might need to be cut. 

Then there is the issue of my MS. On the rare occasions where I thought about what retirement might be like before MS entered the picture, I envisioned a life where I could do anything I pleased and travel where I wanted to. While that isn’t off the table, the fact is my mobility is extremely compromised, and I lead a sedentary life. I have always enjoyed getting on a plane and flying off to visit new places and friends, but MS has made travelling and sightseeing a chore. 

These types of issues made it harder to commit to a date. I worked on the numbers with a financial advisor last year to obtain a level of comfort, but you don’t really know what it will be like until you take the plunge and see what develops. 

I pledged to take plunge and retire last December, but it decided to defer that decision for one year. I felt more committed to pulling the plug this time around but wondered if I would come up with another excuse to wimp out again once it came crunch time to file the paperwork. Deep down, I wanted the decision to be a no-brainer but did not know what it would take for that to occur. 

I kept a monthly countdown and became more excited and apprehensive as each month elapsed. Then out of the blue, my employer announced a voluntary early retirement program for employees who met certain age and longevity criteria. That caught my attention. 

I was hoping for an offer I couldn’t refuse but thought that might be too optimistic. But when the offer came, it was more generous than I expected, so much so that I read it several times and called the contact numbers on the offer to make sure I understood it correctly. I had, and this was the nudge I needed. 

So, the plug has been officially pulled. My last day is September 19th. I’m both excited and a little nervous. I will enjoy not having to wake up to an alarm clock unless I want to. I will enjoy having a lot of free time on my hands and need to come up with fun and interesting things to fill most of that time. What I am most looking forward to is leaving the daily work grind, staying up as late as I choose and sleeping in a little more in the mornings. 

Now that I’ve committed, the significance of what this step means has settled in. 

I’ve always thought of life as a series of periods, with each period preparing us for the next. Childhood leads to adolescence then adulthood. As an adult we typically begin our careers in earnest, get married, have kids, secure housing, and slave away while trying to save enough to be able to afford to retire.      

I don’t want to minimize the joy and freedom being retired brings.  But if we are talking about life stages, what is the next big thing after retirement? Death. That sounds grim, but I don’t mean it that way.

Let’s face it. Retirement is the beginning of the last leg of our life’s journey. I prefer to think of it as revisiting the childhood years, minus the immaturity. It is a time to recapture as much of the fun we had as kids and squeeze every ounce of enjoyment out of whatever years that remain. The hope is we won’t be short-changed regarding how many years we get, that we remain mentally sharp, and we don’t spend significant time in a hospital or any time in a nursing home. 

My parents were lucky. Their biggest fears were that they would become sick and a burden to their kids, but that never happened.  They lived to 96 and 92 and were both physically fit and mentally sharp for their age. Their ends came quickly with no prolonged illness or drama.  Dad died within three days of the event that felled him and Mom never recovered from her event and was gone hours later. I should be so lucky. 

When I first learned I had MS and contemplated an unknown future, I didn’t dwell or obsess about a life that suddenly had storm clouds on the horizon. Whatever the future held would arrive in due time so why worry until it is necessary? It was important to learn what I could do in terms of treatments and meds that could slow my progression, but I didn’t let the disease consume my thoughts or dictate how I lived. I’m following that same mindset regarding the retirement years: embrace the present, squeeze as much enjoyment from it as possible, and worry about the other shit when I must.Damm the torpedoes, full steam ahead, and seize the day!