Was it worth it?

May 20, 2010

Recently, on my Cytoxan post under the category of Chemo a comment was posted asking if it was worth it in the end.  Cytoxan is a chemotherapy treatment for PPMS(other diseases as well) .  As you all know Primary Progressive Multiple Sclerosis (PPMS) has few treatment options.  Of course when I say “treament” I am referring to disease modifying drugs.  Symptom meds are abundant for all types of MS.

My treatment plan called for twelve treatments-once a month for a year.  Essentially, I gave a year to this drug in hopes for three to five or more good years.  I am going on two years, but I have noticed a small slide downward recently.  After some steroids and other med adjustments I am feeling strong again.  Yes, I was somewhat disappointed that after only a year and half, the disease is rearing it ugly head.  But even with the minor setback I am still much better, feeling stronger than before the cytoxan.

So the question posed is “Was it worth it in the end?” YES!!!!  I have learned and continue to learn many lessons thanks to PPMS.  One important lesson learned that I cannot stress enough is when dealing with a disease that has no way to positively be diagnosed, nor treatment options of any guarantee than the idea of popping an aspirin and being done with it are OVER!  The more difficult a disease the more difficult your treatment options.  That is a fact that must be accepted.  Once accepted than the idea of a year of cytoxan is at least an option.

Don’t get me wrong.  I am not advocating everyone rush to their doc’s office and demand cytoxan.  It is an individual choice offered at a time when there are no other choices but to succumb to the disease.  Succumbing to the disease was and is not an option for me.  Think of the place you must be  for the  a year of monthly chemo treatments as the preferable option.  And the caveat is no guarantee that in the end you will be any better than before you began.  Of course, that is not entirely true as cytoxan has been used for twenty or more years in combating PPMS.  So there is a history to hang your hope upon.

If you find the treatment you are currently using is worse than the disease, and you are not feeling any better than perhaps that treatment is not for you.  On different ms forums and meetings,  I hear people talking about going off this med or that med for a respite. They find they need a rest from either dmd’s(disease modifying drugs) or from symptom meds.  I have never found this to be the case.  I want to scream, “MAYBE YOU AREN”T AS BAD AS YOU THINK!”  If you can go off your meds and feel better than on them that should be a wake-up call.

Now, I know what you all are thinking.  When I went through a year of chemo there must have been times when I wanted to stop, to take a break.  No. No there wasn’t.  I had friends and family telling me I should stop because I felt sick and weak from the chemo.  But, I knew going into the treatment it would be difficult and the payoff would come after I was done the treatment.  I knew that because me docs explained that to me.  Also, I did notice improvement along the way.  I was becoming stronger both in instant strength and endurance even though the chemo weakened me and made my stomach nauseous all month long.

The second lesson learned from PPMS is that a strong mind is necessary to successfully deal with this disease.  Atypical acute PPMS is not for the weak minded.  I slipped earlier this year in giving in to mental weakness.  After years of dealing with this disease as every day is a fight to feel good. I found my strength again. I find my strength in enjoying my family, my friends, watching a bird, admiring a wildflower, enjoying the moment I am in as that is all I have.  There are no guarantees and no expectations so all I have to do is enjoy this moment.  Thanks to cytoxan, the baclofen pump, past PPMS patients, docs, family, friends, etc. (you get the idea,  we are never alone, we are connected to everyone and everything) I can enjoy this moment as it is worth it in the end.

the beginning

May 3, 2010

I thought I would revisit the beginning of this whole MS. I know I’ve written about it before but I often hear people discussing the problem of getting diagnosed with MS or finding a doc that will actually treat you as a patient and treat you with the respect a person deserves.  Not all of us MSers are lucky enough to be diagnosed with a simple MRi and lumbar puncture.

Along my journey I learned much about MS and how it is diagnosed.  Somewhere along the way a group of neurologists decided that all people with an arbitrary amount of lesions on their MRi and certain results on a Lumbar Puncture WILL be diagnosed with MS. All others are excluded unless of course (here it is) they have documented symptoms lasting more than a year, then they MAY carry an MS diagnosis. This is called the McDonald Criteria.  Yes, yes, I know I am oversimplifying it, but essentially that is the criteria.

Not surprisingly then, we have categories like Atypical Chronic Progressive MS.  Kinda like that Miscellaneous Category in which everything that  doesn’t fit anywhere else, end up.  For all of you Christmas Special followers, consider everyone outside of the McDonald Criteria as living on the Island of Misfits.  We are like the toys that are very useful and fun but not like the others.  If you are keen on Sesame Street than we are the fourth picture-the one that doesn’t belong.  Do you see the pattern, the connection, the exclusion?

The key to getting diagnosed is finding the right person who will listen.  Now this can be a doctor (if so, then most helpful) or a neighbor or a friend or a stranger standing in line at the grocery market.  The more you talk to people the quicker you will find a doctor who is really dedicated to helping people AND who WILL help you with your illness.  Whether you are trying to get diagnosed or trying to find help in feeling better or getting meds, etc.  I think you see where I am going.

While waiting for an MS appointment recently I overheard two people talking.  I don’t mean that eavesdropped as they were sitting next to me in a very tiny, cramped waiting room.  Ok, so I am justifying it.  Anyway, these two women came in together.  One was the patient the  other a friend.  The patient was from Alaska while the other from a little state on the east coast.  And we were sitting in the waiting room on the east coast of the USA.   The patient moved from Alaska to East Coast USA because she had trouble finding treatment, doctors and diagnosis. Her friend knew of the MS clinic nearby and suggested she fly in for a visit.  Well that turned into  diagnosis, treatment, and a permanent move.

When my day were most frustrating in the beginning, I found help in a friend.  When Dr. Frick, Dr. Frack, and Dr. Headupmybutt all turned their noses up at me, a friend pointed me in the right direction.

I learned not to give up but to persevere.  Oh, I wanted to give up.  But friends and family wouldn’t stop bugging me.  I had to keep going.  Now, if you don’t have people like that then find them.  Find at least one other person who will keep you going.  Some people have found help on forums, websites, blogs, etc.

There are a lot of Dr. Headupmybutts out there.  They are the problem, not you.  It is funny because when you have a child most pediatricians will say, “Well, a mother knows,” when you bring in your sick child.  Yet as an adult, when docs can’t find empirical(hard evidence on their tests) then they say “Well, a doctor knows,”.  Stick to knowing yourself.  If you know something is wrong, then keep trying on Doctors like you try on shoes.  You know what is best for you, you know when something is wrong.  You know?

I woke up today.  I have twenty-four hours that I did not have before.  Those hours may be riddled with atypical chronic progressive MS, but these are my brand new hours. Each day I feel myself gaining strength, not physically, mentally.  My MS deteriorates my physical body more than my mental body.

For me, living every day, well really living HAPPILY, every day requires a strong mental fortitude that sees only right now.  Worrying about future events that might not even happen, lamenting what might have been expends precious energy in a disease that is all about conserving energy.

The future hasn’t happened so who knows what will be.  My energy is better used on the things, events, people here, now.  After all I am sure there will be twenty or more disease modifying drugs(dmd)  for Relapsing Remitting MS before Progressive MS even sees one FDA approved dmd.  Now don’t go yelling at me about minimizing RRMS.  I am not.  It must be very difficult to feel good one day, not the next then feel better weeks later again.  AND to not know when that dip will occur.

I mean the docs and researchers must see the highs and low of RRMS as much more important than the continual decline of Progressive MS.  I would love to wake up once, for one moment without pain, dizziness, low energy, bladder problems, etc.  I see other diseases being fought from the worst debilitation to the least.  But good ol’ National MS Society sees RRMS as an easy way to make money. OOPS!  Did I just say that. Yes, I did.

Ok, back to the moment.  I have these brand new hours and I don’t want to spend them lamenting, and complaining.  Life is too short; I want to be happy. See how easy it is to fall back into discouragement.  Alas, I am becoming happy again.  A cure can’t make me happy, a dmd can’t make me happy.  It can make anyone happy.  Happiness comes from within.  So I was dealt these cards.  I simply need to play the best hand I can.  End of the story.

Playing the best hand you can is easy to say and very hard to do.  Waking each day thankful for the new hours to spend with family, or friends, or quietly enjoying peace is my game plan.  From my window I am able to see trees, plants, birds, insects, sky, clouds, so many wonderful sights.  I love to be outside, in the woods, near a body of water, in the middle of a freshly cut lawn breathing in those smells and taking in those sights.

The things we can’t replicate like sun, breeze, flowers contain intrinsic value and these bring us most happiness.  From my living room window I see my weeping cherry tree.  The pale pink blossoms cascading down each branch was consumed with bees bustling to collect pollen- bee gold dust.  Sitting under the tree I heard the bees’ buzzing-a natural concerto- while watching the bees weigh themselves down with pollen.  Once a bee was so heavy with pollen it waffled away from the weeping cherry tree to some unknown hive.  Because of MS I was able to witness that beautiful event.  I was even able to photograph some of it.

If I didn’t have MS or if I had RRMS I would surely be working and not available in the middle of the day to witness and capture the hardworking bees.  I guess the moral of the story is to be happy where you are because all around you are things about which to be happy.  Atypical Chronic Progressive MS is the proverbial double edged sword.

Living Today

April 23, 2010

As I recently stated I have been in a bit of a funk lately.  Living with atypical chronic progressive MS is difficult.  For so many years I maintained a positive attitude.  Not that I don’t have a positive attitude now.  I am positive that MS is a 24/7 365 day struggle.  Some would say that isn’t a happy attitude.  Ok, I’ll give you that.  But it is a realistic attitude.

Realistically, people hit emotional walls every day.  No big epiphany there.  Some say you can endure anything for a brief period of time.  I will agree with that.  Brief, is the operative word. My brief period of time is different than another.  And living with a chronic progressive disease in which no real disease modifying drug is very helpful and no cure available can be disheartening.

But, you’ll say, you just posted about how much the baclofen pump is helping.  Yes. The baclofen pump does not impede the progression of the disease; it only helps mitigate the SYMPTOMS.  And the cytoxan(used for inhibiting disease progression) is hard on the body and for me short lived.  I completed the cytoxan 1 year and three months ago.  A typical person gets three to five years before progression rears its ugly head.  Being atypical I didn’t even get two years.

See you fight and you fight and still you only move inches.  It is finding happiness in those inches or in spite of only inches  is the key.  If you can endure anything for brief periods of time ( I know I can) then I guess my key is in keeping my time to moments.  Keeping my head in the moment, being happy where I am, knowing it could be worse, and enjoying all that is around me by living today.

After all what is the alternative if not living.  Remembering those things that made me happy-family, friends, hobbies, connections to people.  These really are the enduring nourishments for a life fulfilled.  Multiple Sclerosis can leave people isolated, cut off from former lives and from the larger population.  When you can’t work, can’t lead a “normal” life, you need to work harder to connect with people.  For it is in those connections that we truly live, that we truly find happiness.

This past fall I was feeling like I was beating MS, or that the effects of MS were minimal.  So I went to a 40th birthday party for a friend.  It was a private event held in the evening with a live band and about 100 people. It began at 8pm and went long after I left.  People actually have energy and ALOT of it past 8pm.  I forgot that.  I watched people dancing at 9pm and thought, “Wow, I remember those days.”  I stood with my cement pillar legs firmly anchored to the ground watching people 10-15 years older than I dance and dance and dance.  My mind raced with the songs, choreographing the moves I would have performed had it not been for MS.

That night was the beginning of my unhappiness for I realized that night no matter how good I felt, I would never feel like I did before MS.  I know this feeling is temporary; my mind is strong and my will, stronger.  I live today, I live for today.

Baclofen Pump Update

April 22, 2010

So, today I thought I would give a quick( if you’ve read my posts you know quick isn’t really in my vocabulary. I tend to go on and on) update regarding my baclofen pump.  I’ve had my pump now for 1 year and 9 months.  YIPEE!  It still works great and I am still loving it.

Yes, I still feel spasms sometimes.  But they are weaker than before the pump.  Everything has to be judged according to a before time.  For instance in my family we refer the time before ms as “PMS” -preMS.  Yes, I am aware of the typical meaning behind PMS.  But really it works here too because since having MS I feel bloated and irritable. And the time after MS as well “AMS”.  That works to because well I ams filled with MS.  Okay, bad joke but it is important.

SO, I feel spasms but not to the extent I did Pre-pump.  When they get bad or the stiffness in the legs return we (docs and I ) crank it up the pump.  For me, it really is the best thing since sliced bread.  If for nothing else than for some relief from the cloudy, drunken, exhausting side-effects of Baclofen Pills taken orally.

I have had some interesting incidents along the way.  The MRIs are always interesting. My visits to the MRI centers are always a crap shoot.  Some of the personnel at the center are leery, afraid, hesitant to perform the tests.  They must be afraid something bad will happen to the pump.  Apparently, you have 24 hours to get the pump checked after and MRI. Well, at the center I go they are unwilling to perform the MRI unless I have an appointment to get my pump checked within 4 hours.  This becomes a bit of a drag when the MS Docs are telling me one thing and the MRI center is telling me another.  I mean really!  I have enough on plate to deal with, they can’t find common ground or at least a common time frame.

Ok, so once I had a problem during an MRI.  My pump felt very hot, it was moving and fluttering.  That was a very weird and strange feeling.  The technician immediately stopped the test, got the MRI doc and he ended the MRI that day.  The technician looked frightened, she couldn’t escort me out of the building fast enough.  But that was only once AND I had both brain and spinal MRI. I must have been in the tunnel for close to 90 minutes.  Later, I found out that it isn’t so much where they scan as it is the time in the tunnel that affects the pump.  Good stuff to know.  Split up the MRI scans even it means two visits.  The technicians will be happy and so will you.

Secondly, I lost weight. Seems like a good thing, positive, happy, healthy.  Well, it is overall. But if you have a pump implanted than  weight loss can effect the pump. It doesn’t effect the running or the function of the pump.  But, the pocket in which the pump is placed becomes loose with weight loss and the pump may move, tilt.  If too much weight is lost and the pocket becomes very loose than the pump has the potential to spin which makes it impossible to refill.  I am not sure what happens at that point-I know won’t be an easy fix.  SO, the  big lesson there is lose the weight before the pump or keep weight you have until pump replacement time.

Other than those small things the pump keeps pumping and I keep walking on my own two legs in a less cloudy haze.  All in all I am happy and continue to be happy with the pump.  A real positive in AMS era.  I feel AMS good not PMS good.  And you thought good was good after all a rose by any other name….

MS today

April 20, 2010

I  intentionally stopped posting to this blog since August because I wanted to see if I could live my life without thinking or should I say overtly reminding myself that I have multiple sclerosis.  Yes,  I know it was just an exercise in futility.  I mean I am the disease.  I can’t change it, like I can’t change my eye color or my height.

I have accepted this fact.  Now, I want to live everyday.  I don’t mean the normal every day run of the mill same old crap.  I mean live.  Enjoy.  Appreciate the life I do have for as long as I can.  It is difficult because those around me remind me every day of my limitations.  I pass a woman jogging, I hear talk in the grocery store about a new club opening, I see a bike rider.  I am aware of what I can’t do.  I try to explore  things that I can do.

Gardening, photography, web design.  These a few of my new areas of interest I am developing.  My favorite is photography.  There is a vast amount to learn; but I am learning.  It feels good, great, to continue learning new things.  I think it keeps me fresh, young, feeling good.  I don’t have to move far to take pictures.  I love taking photos of nature.  The beauty in that is nature is all around us.

The side effect is that I am reminded of the wonders of this world.  I need to be reminded because every day is a struggle.  If you don’t have something beyond your own self then your are defeated.  I am doing okay with ms.  The pump enables me to walk, the cytoxan and follow-up meds help me with endurance.  But there are still the every day fight, struggles.

My memory isn’t what is used to be.  Fighting spasms, exhaustion, bodily functions every day since the onset of chronic progressive multiple sclerosis becomes depressing, isolating.  I needed an outlet to learn new things, I needed a respite from the pushing and fighting.  But when you have a chronic disease, a respite never comes.

So what do you do?  I don’t know.  For me, I keep on.  I surround myself with uplifting positive messages. Everyday I try to do something I love.  I try to learn something new everyday.  I try to help someone everyday.  I try. I did stop trying for a while.  That was the worst thing I could ever do.

I said “this is it.  I am done fighting, done trying.”  I let depression and unhappiness inside.  Once they are in it is very difficult to kick them out.  That is where I am today.  I am on the verge of kicking them out.  And this blog helped to keep me happy before, helped to keep me going before.  I miss contact with others who know what I am going through, miss contact with others who are looking for someone who knows what they are going through.

We are all here together.  We are all more like each other than not.  That is an important point for me to remember.  So,  I will write this blog and continue to write because it helps me deal with my ms.  Thanks to all of you for making that happen.

I’m Bbbbaaaaccckkkk!!!

August 18, 2009

Well, I’ve taken a bit of a hiatus for personal reasons.  I’m back though and would like to thank everyone who visited this blog while I was away.  And a special shout out to everyone who has commented during this time as well.

I am glad to report that I am still feeling very healthy.  The cytoxan and subsequent follow-up on cellcept has been successful, as has been the Baclofen Pump.  I am more mobile than I have been in years.  It feels good.  There were some minor bumps along the way though, just like real life.

I have switched from cellcept to myfortic.  I had some stomach issues with cellcept which I guess can happen.  I am told by docs that most people tolerate the med okay. I didn’t.  No big problems.  While on cellcept I had a constant feeling of nausea and then some suspected bleeding.  A quick endoscope and a change to myfortic fixed that minor issue.

Myfortic is the same med as cellcept only with a time release coating that prevents stomach problems.  That is the best way to describe it, I think.  Also the dosage is a bit different.  You need less to obtain the same effect.  So why would docs prescribe cellcept instead of myfortic?  Good question.  I had the same one myself.  I bet you can guess the answer.  Go ahead, guess.     The answer is insurance.  Myfortic is more expensive than cellcept and considering that “most people tolerate” cellcept well there is no point to cover myfortic before trying cellcept.  Or so goes the politically correct response from most prescription coverage plans.

Oh, don’t get me wrong, I am not bashing the insurance companies.  I am hoping they are my friends in light of the new healthcare initiative pushed my the present governmental regime.  That is all I am going to say regarding politics. We all have our own thoughts and ideas and feelings in the matter.

The other issue for me, I guess it is an issue.  I haven’t really made up my mind yet.  But since I got the baclofen pump, I haven’t had a refill appointment in which the pump wasn’t increased.  Everytime  I go for a refill I need to increase the dose. I am stiffening and sore.  So what’s the problem with that? I’m mobile, I’m not in severe pain, I’ve been able to keep active.  Sounds like a dream come true.  And it IS a DREAM COME TRUE!

I just have this nagging feeling that as good as I am right now, some symptoms are never going to go away, even for a moment.  Spasticity is apparently here to stay. I’ve made friends with it and am so thankful for the baclofen pump and the docs who knew when to offer it to me.

Since the implantation of the pump I have learned that some MS patients are found in nursing homes wrapped like pretzels from the effects of spasticity.  These patients didn’t have docs that knew about the pump or cared enough to find out.  I heard about one woman, in her late thirties with children, who was left in a nursing home to curl up.  After the pump implantation she was able to go home, in a wheelchair (at least she was sitting up and uncurled), feed herself and be a part of her family.  WOW! That is a success story!

When I hear stories like that, it puts my life in perspective.  I am thankful for the technology available today, thankful for my doctors, thankful for my family’s support and happy to only have my current issues.  Sometimes the devil you do know is better than the devil you don’t. AND it is always important to research, reach out and empower yourself with knowledge.