Ocrevus

Fourth Wheelchair Ride, Ocrevus and Other Tales

Posted on by tresswann

Well, if this is Mt. Sinai, this must be a wheelchair.  Right!  I was scheduled to see my neurologist prior to my second Ocrevus infusion.  She’s on 98th Street and the infusion was on 102, four tiny blocks.  As I have mentioned, I did see a new neurologist closer to home.  She works under the doctor who provided my confirming diagnosis.  I recently connected with someone who had her as a doctor.  She called the 2nd opinion doctor a “robot genius”.

The stopgap neurologist had upped my Baclofen to 6 pills a day. I felt I didn’t want or need it.  I was discussing this with my doctor, Dr. F and how the other doctor was just missing.  I told her about “robot genius” and how I term the new one, “mini robot genius”.  We then had a whole conversation about med students, empathy and humanity. She feels it is lacking in her students.  She  considers me, as her patient, as part of her extended family and it shows. We discuss my signing up for the MS Gym.  Dr. F is pleased with that idea and tells me she has other patients who use it.     She assures me that even though I have deteriorated physically my mind remains the same.  I do feel like me until I try to stand or walk.

Ah, now I have to get over the four little blocks to the infusion.  I used to be able to walk a block in less than a minute in high heels!  I really thought I’d be able to struggle the 4 blocks.  Tom asks Dr. F if we can sort out a wheelchair and go underground.  No problem, she’s on her way out (she came into the office before her rounds to see me) and will speak to Mr. Mike. Mr. Mike greets me near the exit.  I get into the chair.  Tom takes the walker and we are off to the races.  It’s a beautiful autumn day in New York City so Mr. Mike decides to whisk me above ground.  It’s odd to be moving so quickly without any effort. I used to love the feeling of my body whizzing down streets, boardwalks, wet sand.  We are zooming along city blocks.  It’s dizzying.  It’s the speed I used to walk at but now I am in a chair and relatively invisible.  I am invisible until we get to the building and the elevator.  Even though this is an hospital, people get slightly huffy by the elevator.  The chair disrupts the space.  Mr. Mike is a rockstar in this building as he used to work here.  The acclaim becomes even more pronounced as we get to the infusion floor.  Apparently, I am confused by referring to it as an infusion.  In this world that’s for cancer patients.  I am here for therapy.

Tom has been insistent that he will demand Nick, my previous nurse as he knows exactly how to hit my one vein. No, I’ve never had a drug issue but skinny veins.  Nick is not in and I get a new nurse.  She is a compact Filipina nurse.  Years ago, I had a temporary  fill in job with a Filipino family I knew.  I described it as selling Filipino nurses to hospitals.  I was terrible at it but apparently the idea was sound.  C looks at my chart and states I must have a good vein other than the one in my hand that Nick has noted. She gets a heating pad, wraps me up and finds a  vein in my arm.  This means that instead of having a needle in my hand for  4- 5 hours I could have it in my arm.  It makes it a little easier.

I am used to the infusions by now.  Tom gets his fill of HGTV as he sits by my side.  I get uninterrupted reading time.  The problem is that I can’t use the facilities for the infusion period.  Actually, I can but it is involved so I have always held it. Yes, in Uruguay as a thirty something for  13 hours!  Buckets and newspapers and curtains that don’t close, do not work for me.  My luck finally ran out this time.  With close to 90 minutes left, my bladder had it.  I caved.  An expedition was needed -an aide holding the IV pole and me, Tom following behind with the walker.  The fun started when we reached the bathroom.  I do have bashful kidney/shy bladder but we were way beyond that.  The three of us caravan into the bathroom.  Now is the tricky bit – the aide has to leave, the pole needs to be held up and me, too.  My recollection is just of me crying out, “no, no I don’t want to fall.” She is tiny, smaller than my new 5’3″ stature but strong. Somehow we manage to get my pants off and me situated while Tom keeps screaming at me, “Be careful of the IV! Be careful of the IV!”  I walker it back to my chair with Tom holding the IV.  The aide literally left. The rest of the procedure is uneventful.  As usual, the next day I was my usual boiled lobster color.

I did come out of it with a somewhat brighter attitude.  I always get a brief bounce from the Ocrevus.  Plus, I have felt that I was getting weaker.  Dr. F asked if I had had an infection.  Bingo!  Teeth.   There’s hope once more at the bottom of Pandora’s box.

Using Herb aka Weed, Ganja, MMJ

Posted on by tresswann

I grew up with a mother who had a very high pain threshold.  She thought childbirth pain vastly overrated.  So, that informed my view of pain. In the past, I used to get laughing gas and Novocaine for cavities.  Of course, my mother considered me babyish for this amongst other things.

Some years ago, I started having major issues with my teeth.  In fact, I attribute dental problems for unleashing this in my system.  I had Vicodin.  This was before the pain I am currently in.  My neurologist said it was addictive.  I don’t care.  I do not have an addictive personality. Despite years of denying my mother’s assessment, I confess; I am a control freak.  I, especially do not like anything to be in control of me – people, jobs, drinks, drugs.  I would have managed it.

I also don’t prefer using medicine.  It’s another thing I grew up with.  We only took aspirin with real fevers.  I carry that with me to this day.  When this journey started, I rejected all talk of drugs.  As things progressed, I broke down.  I now take Ampyra, Baclofen and Ocrevus along with high dose Biotin.

I read Megan Llewellyn’s journey with MMJ and was encouraged. People began to talk about it  in a more public space.  People also began to personally suggest I start smoking.  I saw people online walk again.

History:

Let’s tackle actual cigarette smoking, first.  I always thought it most unattractive and senseless.  When I was about 10, I told my at-the-time smoker parents that I thought it was stupid.  This was in the day when there were still cigarette ads and commercials.

I became older and thought it nasty and smelly as well as ugly looking.  All that being said, I found myself from my junior year university finals puffing away during that period.  Only at finals.  However, my senior finals were stressful.  By this time, my parents had stopped smoking.  The first week I was home, I found myself blowing smoke outside the bathroom window.  The control freak emerged.  How could I be smoking like this after only three weeks?  I am my mother’s child and stopped.  She decided one day to stop smoking and she did. After college, the next time I smoked was when I was losing a beloved job.  I had a corner office on a high floor of the Empire State building.  It was back in the days with ashtrays and windows that opened.  I used to have my assistant go downstairs and buy me a pack of Eves.  I remember one of the sales managers coming into my office and saying it smelt of smoke but you don’t smoke.  I lost the job and stopped.

Alright, next, actual marijuana and hashish.  Okay, I am a child of the 70’s.  The first thing that stopped me was (see above) smoking is ugly.  By the way, so is snorting cocaine. In the town and era I grew up in, alcohol was considered better than weed.  Parents had no problems if you were drunk but stoned?  It was around me but not for me.  At college, many of the pre-meds stayed away due to med school.  I had a truly horrific sophomore year which culminated in academic disaster.  I returned for my junior year with enormous tension and stress.  My college boyfriend prescribed pot.  On one of the better days of my sophomore  year, one of my roommates decided to see what pot  was all about.  We enlisted the help of two guys who are now nuclear physicists.  She is also a prominent doctor.  We smoked somehow and became really, really high though we didn’t know it.  It was one of those spicy, inviting spring evenings and we gadded over to her boyfriend’s fraternity house.  He has had fairly prominent political and legal roles, including judicial.  See, I have always known I am the least successful member of my college class.  Anyhow, the two of us stood in the street bellowing for him to comedown.  Wisely, he didn’t.  So, it’s the start of junior year.  I still hate smoking especially in front of the opposite sex.  My boyfriend (significant legal position) eventually brings a hookah.  The bong did not work for me.  Two – three weeks in, Miss Control Freak surfaced again and determined to need something everyday was not in her best interests. After that, only if I drank. If I drank and smoked on a Saturday, you could scrape me off the ceiling on Wednesday.  My last bout for years occurred during senior week festivities when I locked myself in (name dropper) a guy who became a local broadcaster’s closet.  I have successfully avoided him for years.  Thereafter, once a decade ending on Good Friday, 1994.

Before I certified, someone gave me caramel gummi bears with CBD/THC.   I have to channel my father who always said you never knew what you were going to get.  They were uneven.  They definitely relaxed  and calmed me.  They satisfied my sweet tooth after dinner.  My muscles were looser.  Sometimes, I would get higher than other times.  Control!

Someone else provided me with actual weed .  I coughed, my chest burned and I aced the stairstepper.

We were told about a CBD/MMJ Exposition east of us.  Well, it was in an industrial area.  Definitely, stoners.  Not only was I the oldest, but the lamest,  However, I felt like fresh meat.  They didn’t want me to leave.  And no, I wasn’t going to put CBD oil on my tongue  for the hour drive home.

I met someone at my father-in-law’s funeral.  She told me that the legal MMJ was expensive and you couldn’t get high.  Uh, see above.  Not my interest!

I am of Jamaican ancestry.  Marijuana is herb aka ganja. It is definitely medicinal, if not religious. I like the idea of using herb instead of pharmaceuticals.

I went to my primary.  He certifies you for $200 cash.  Clueless, it’s just about the money. He wrote me a fairly open ended prescription – no monthly limit, no specific kind.

In New York , there is no weed, edibles or lotions.  Options are: pills, vaping and sublingual oil.  Guess what I chose?  Well, not vaping.  I chose the sublingual 50/50 CBD/THC oil to start.  It’s cash only. For me, this means over $100 a month.  It did numb my pain. I am mildly less tense.  The first month I was taking it 3-4 times a day.

Last month, I decided to up the THC and went to 75THC/25CBD oil.  This I decided to use maybe once a day.  I was warned about the side effects – sleepy and munchy.  NOT.  I get a little thirsty.  I haven’t noticed a discernable difference between the two .

My husband gives it to me from a dropper.  I feel like a baby bird, opening my mouth for nourishment.

I take Baclofen and recently my dosage was increased.  I started with an extra pill at night, no effect.  One night I took the higher THC.  I just about passed out during one of my favorite programs.  My husband, “That’s it! No more THC for you!”  We figured out the next day that it was the Baclofen combo.

I was gifted with the real deal.  It relaxes me but I hate smoking and feeling high.

What did I expect?  I wanted increased flexibility, energy and stamina.  So far, it’s not working.

What has been your experience?

Suggestions?

New Neurologist Visit

Posted on by tresswann

I adore my neurologist, truly.  I have been involved with her since the  beginning.  She was a fellow observing my initial doctor.  When she established her practice, I jumped at the chance.  She explained Zumba and WII to the original doctor.  I have been with her since 2008.  Her philosophy meshed with mine – sometimes a fall is just a fall.  I have always fallen every time I am upset since I was young.  I spent most of my senior year in college on the ground.  The upside is I know how to fall.  I have been told, as much as something like this is possible, that I do it gracefully.  She said if I wanted to wear kitten heels it was fine as long as it was safe.  Personally, she didn’t understand why anyone would want to wear heels.  We email each other.  She practices in a multiple sclerosis institute.  This has given me access to cutting edge research and care.  We agree to disagree on what is inevitable.  In recent years, she has been saying I need to recognize this.  Inevitable is a word I disagree with.  Maybe I am in denial, however, inevitable implies defeat.  Defeat cannot be an option for me.

The Institute is located in NYC and I usually go by train.   I have weakened so that isn’t really possible.  I would have to take car service for hundreds of dollars.  Well, I really haven’t worked in three years so that is an issue.  I did try and get transportation through health insurance.  I jumped through hoops.  I have had my primary care doctor send one form three separate times.  My neurologist is considered  out of area.  However, continuity of care is not considered a valid reason.  Really?!  I have a chronic illness and was being seen by a renown  doctor for 10 years in an Institute dedicated to my condition.  I participate in research there.  This was not good enough.

I found there was an Institute, driveable from where I live.  Problem – this is where I had my second opinion years ago.  It was horrible.  The doctor literally forgot I was there.  When she saw me, she asked what I expected of her.  An f*ng miracle?  At the end when I asked what I could do and was told to live a good life.  I voted with my feet.  It would have been closer and easier. She was an alum of my uni.  Even though I prayed when I was 18 to never get sick so I would never have to deal with any of them, I tend to pick alumni.  She exemplified all the reasons why not.

So, I was faced with returning.  When I rang, I was specific that I did not want HER! Surprised! They made it with someone else.

It started off well.  I was taken more or less on time. There was even an apology for the 10 minute delay.  None had been offered at the time of the hours long wait when that occurred. It went downhill from there.  One of the things my husband and I have been concerned about has beenmy increasing pain.  The medical herb is just numbing it.  I even had to fill out a questionnaire about my levels of pain.  Nothing!  And we asked more than once during the course of the visit.  The closest we came was a suggestion to try different combinations of the medical marijuana.

I brought all three spectral legs, including Frankie.  I indicated the problems with Frankie.  Again, nothing! Onto the chariot aka the rollator.  I self-prescribed and bought mine on Amazon for $25.  I need something different.  “Your physical therapist can do that for you.”  Really? And PT?  She wrote me a scrip for her office, over half an hour away.  Tone deaf!  Diet?  Exercise?  No comment. Call me dissatisfied and back  to the drawing board.

Oh and let us not forget the Ocrevus.  I am scheduled for October 4 in NYC.    Yes, I can get it with her but my husband probably can’t be with me and I’ll be in a circle with 5 other people.  We want a hospital and a semi-private setting.

The only thing I did get is an increase in my Baclofen.  More on that in another blog.

She didn’t even ask me for a return date.  Guess the feeling was mutual.

I feel defeated as I don’t think I’ll be able to go back to my doctor.  So, another stressor, how do I find the care I need?

Ocrevus 2nd Round, Yukons and Skinny

Posted on by tresswann

Yesterday, I had the 2nd infusion of my first round of Ocrevus.  I have noticed some tiny, welcome improvements in the last two weeks.  However,  I was not strong enough to commute so needed car service again into NYC.  It takes quite a bit of the stress out of the day but it balances as it costs a small fortune.  I am like Scarlett O’Hara – I’ll think about it tomorrow.  Instead of a Town Car, a GM Yukon pulled up.  It had two steps up and a high seat.  Fun.  The way I usually get into my little Encore is to park my butt in reverse on the seat and grab my right leg by the spectral leg aka Frankie and pull it in and then lift my leg.  The seat in the Yukon is too high for this maneuver.  I am tense as it is.  Tom is getting upset.  The   driver is flummoxed.  We try for me to sort of crawl in front-wise.   That is so not working.  Back to the other way.  Tom has to try to grab me under my armpits and push me up.  He has a hernia so this is not healthy. We get it done. The driver says he hopes he gets us for the return trip.  I tell Tom to call the car company and just say no.  Of course, he does not do this.

We get to the hospital.  Our plan last time had been to get a wheelchair once there but there were none.  This time, we discussed bringing in the rollator aka the protective shield but decided with my new minimal strength, the stick would do.  Well, as soon as the hospital doors opened, the security guard/receptionist rushed over with a wheelchair.  Oh well, might as well lay back and think of England.

I had been approaching this infusion with some trepidation due to having to have it in my hand and the two attempts to get the needle in last time.  I did have Nick, my favorite nurse, again.  He understands my phobias, eccentricities and my veins!  This time was painless.  Nick informed me that the problem is that I have skinny veins.  For someone who has struggled with weight for just about her whole adult life, this is peculiarly welcome news.  My blood test comes back good.  He even tells me my kidney has not gone up which apparently is great.

Steroid time – minimal bad taste.  Everything goes well. As I explain to Nick, aside from my blood/needle thing, I am a good patient.  Except for this condition and a propensity for pharyngitis, I have been ridiculously healthy.  I had chickenpox as a child.  I literally had one spot!  There was a measles epidemic when I was in first grade.  I am a boomer so there were lots and lots of us.  6 children in the entire grade did not get measles.  I was one of the six despite the fact that I lived in a NYC housing project.  This whole thing has come as a late midlife  unpleasant shock.

The infusion goes well except at the end when another nurse comes to remove the stent and sees my right purple Raynaud’s hand.  We calm her down

Return trip, rush hour.  Guess what?  Same driver, same massive Yukon.  But now I have to get in on a crowded street in rush hour with a bandaged right hand.  The driver is double parked and I am floppy.   A cop pulls up.  To quote an old manager by way of Gilbert and Sullivan, “Oh joy, oh rapture unforeseen.”  He says, “You don’t have to worry.” as I say “Could you please help?”  He zips by.  Ah, well.  We get me in again and we are off.

This morning I do wake up with the boiled lobster look but if fades. I am more energetic than I’ve been in awhile.  It’s easier to type.  My speed is almost normal. We went to Bjs.  My body was firing so I nearly tripped three times.  Same as the first time with Rituxin, the spirit is willing but the muscles are weak. And I was able to make it into the car easily.  I am not exhausted now.   Time to implement my plan – I’ll be doing the MSWorkout and the MS Gym along with a gluten-free, dairy-free,  white sugar -free(well, I am going to do my best on sugar).  And, most importantly, medical weed here I come!

Ocrevus, the Future and the Past

Posted on by tresswann

I have had a helluva time getting my first infusion of Ocrevus instead of Rituxin.  No, my doctor is not the problem.  Indeed, she has been a champion.  What happened?  Well, I was initially scheduled to have the 2nd bit on December 21 in the afternoon.  This means that I would have been in Penn Station, late on the Thursday night before Christmas.  Everyone agreed this was a bad idea.  I began to lose strength.  I scheduled for January but it was just above zero degrees, not healthy or positive.  I really began to weaken.  We decided to try and find a local place to do the infusion only. This became problematic.  I had to sort insurance out.  The place we eventually chose wanted me to become their patient.  I didn’t want to change my doctor.  They started asking for all sorts of things.  Every time we gave it to them and they wanted more.  Despite having authorization, they told me I had no prescription.  Then, they said Ocrevus had no idea who I was.  Back to my original doctor and back to NYC.  However, a combination of factors led to my being unable to walk for any distance with or without walker, no escalators.  We determined we would need car service to get into and out of NYC.  Why didn’t I just do this one way December 21?  Hindsight is a great quarterback.

Now, every time I have been to the infusion center, I have been offered a wheelchair.    Our plan this time was to take them up on the offer.  Well, the best laid plans….  None were available.  And we went up the elevator bank on the wrong side of the building.  We discovered this when Reception had no record of my appointment.  More gimping along.  They did intercept me in the hall though and put me in my “room” straightaway.  I was assigned my favorite nurse, Nicholas.  He understands my phobia, terrors, and how my body works or doesn’t.  I have really bad veins.  Luckily, I saw the shooting heroin film in fifth grade and decided needles were not for me.  I used to do alright with shots and blood until my college roomie said she always became faint.  Not me, I was the big sister.  Until my roommate opened her mouth.    I cannot look or deal.  My husband gives platelets on a regular basis.  This is a several hour process. I had to use the restroom once and it was  comic to see me try to walk and not look.  After one of his operations, I nearly passed out when they tried to show me how to change his blood bag.  Nicholas “gets” me.  So, bad veins, infusion and Nicholas.  I used to have a doctor who could find my one good vein.  He died.  For this treatment of several hours, they insert it in my hand.  Nicholas knows where my vein is.  Just typing this is making me lightheaded. Well, Nicholas missed.  It wasn’t really a miss but a malfunction.  He announced he had to go in again.  At this point, I felt  myself going out – cold sweat, hot, red faced, nauseous. The guys tell me no.  Seriously?  Deep breathing and ginger ale.  He gets it in.  Mind you, I keep my head averted the entire time, not just the sticking but the infusion.  Nicholas is good so even when my blood pressure goes to 95 which is not bad for me, we keep on going.  I did get the slight metallic taste with the steroids.  It finished faster than the Rituxin.  I was kept for an extra hour to make sure I was alright.

 

The car service both ways drove past the house I grew up in.  I usually try to avoid it.  After it was sold, it was completely altered.  Driving back, I look carefully and see how the other houses have changed. I am amazed that I am still in contact with half of the people I grew up with on that block.  It’s over 50 years.  Many of   their houses have also changed.  Well, after all that time, of course, houses change.  A couple of things.  I grew up in Levittown where all the houses were supposed to look alike.  They so did not.  The basic floor plan was the same so when people asked where is your bathroom; same place as yours.  What also strikes me is that I used to call it Leave It Town.  Guess what?  I am the one that stayed.  I only live a few miles away.  I only officially moved when I sold my mother’s house.  My life has been so different than what I thought it would be.

My house was across from the parkway with its woods.  I walked everywhere.  I went to the wrong high school.  It  was almost 2 miles away.  I used to walk back and forth several times a day.  Now, I wall surf. I used to walk at night with my dad for hours on the curvy lanes.  It’s too distressing.

 

The following day I didn’t wake up looking like a boiled lobster as I used to with the Rituxin.  I was just a little thirsty without craving sweet things.  And best of all, only half a pound weight gain.  I gained 5 pounds overnight with the Rituxin.  Shallow, I know.

 

I was like the energizer bunny the next day.  For the first time in months, I was able to walk without holding on.  Toddler steps but still big.  Now, I had a slight bump after the Rituxin.  My feeling  was that I was not strong enough the last times to benefit  from the infusions.  So, this time I tired to do more exercise before the infusion.  Physical therapy has been denied by my health insurance as not being medically necessary.  I have not been physically strong enough to go to the gym . My instinct is that if I amp up the exercise, it will push the drug in my body.  Just a thought.  Two days later, as Tom and I are literally discussing this, Ocrevus called.  Any questions?  Yes, is what I am doing helping with making the drug stick?  I spoke to three people and no answer! No one has asked this question? So, I am trying my hardest to power through the fatigue and minor pain to give my body a chance.

 

I appear to have had a minor bump up in stamina and walking.  My therapist noticed and Tom continues to reinforce this.

 

My next one is next week. I wouldn’t say I am looking forward to it.  I want it over and done with.  I am pushing so that I will be able to take the train and hopefully  the  bus there and back. I am hoping for a bigger bounce from the 2nd go round.

 

And my “secret” weapon?  I am going to try some mj after the Ocrevus.  The more I learn about it, the more optimistic I am.  I hear people are walking.  That is my goal.  What do you think? What has been your experience with Ocrevus?