wheelchairs

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.

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!

Crashing

Posted on by tresswann

Well, the doctor did tell me to use the walker, at least till I meet with the rehab specialist.  I rang this week and he doesn’t accept my insurance,  However, he will see me at a clinic.  Tom doesn’t like that but we are just going to have to suck it up and go.

I have been unable to go to the gym this week as Tom is on another binge.  Aside from  the fact that the gym and liquor store are in the same center, he’s been too drunk to really go out in public.  It is what it is.  So, as an alternate measure and part of my plan anyway, I have been doing the stair stepper as much as possible.  The  most I’ve reached is 6600 steps, not enough.

So, what I did on Thursday, was lock the room door.  It is the only room in the house with a door.  This allowed me to do some thinking, writing, reading and even watch programs that I like while I did the stepper. I did get a bit wobbly.  Tom spent most of the day passed out.  After 5, I unlocked the door.  Dunno why.  Just did.  And years ago, he did destroy the door so it’s not like it means anything except symbolically.

The last few weeks I have felt myself deteriorating.  Ever optimistic, I have tried to attribute it to the intense stress that I have been under as well as the lack of activity.  In order for me to take control, I took the walker out from behind the door yesterday.  I need to practice with it before I use it outside and frankly, I needed the extra support.  I almost  never use the spectral leg or cane in the house but I guess life is beginning to change.  I struggled not to weep.  How did this ever come to pass? How can I consider this a viable option?

It happens sometime after you become an    adult.  You walk down the street and see a reflection in a window.  Who is that adult that resembles you if you were grown up?  Wait a minute!  It’s you and you are grown up.  The next step is inevitable.  You catch sight of yourself and….  Yes, I see a little, fragile, misshapen old lady.  How the hell did that happen?

It’s after 5 and I felt a bit weakish.  I didn’t have the cane in my tiny room.  I went to sit down and somehow I didn’t sit on the chair correctly, lost my balance and fell.  I fall well but still make all kinds of noises along the way down.  Tom had been passed out in the other room.  He rushed in bloodshot eyes and all.  This man does not wake up well in the best of times.  I was flat on my back on the floor.  There’s an upside to everything.  Due to drunkenness, I had  a bag filled with bags of tea on the floor.  It was supposed to have been taken upstairs and out of the way.  I can no longer go upstairs without help so it was lying there.  Lucky!  My head hit tea instead of the floor.  So there I was.  I wasn’t hurt but couldn’t move.  This is a man with three sisters and I think he might have played with dolls or maybe not because he has no concept of how real limbs work.  I literally can’t sit up.  First order of business is to get me upright.  He pulled but I have no strength at all apparently in my core.  I slid back down.  It took awhile to explain I needed something to hold onto to keep me in a seated position.  We get there.  Next step is get me to stand or into a chair. Ha!  This is when I discovered my right leg  no longer works.  It cannot bend .   I cannot even cry.  Picture this.  Sometimes, I have problems getting out of the tub.  I lift my right leg with my arm.  If it doesn’t stay up, Tom comes in and lifts it for me.   I explained to Tom that we were going to have to do the same action but not in the tub.  He was still fuddled. Back to I do not have doll limbs.  The video would have gone viral.  Somehow, we got both legs bent.  Then  I flipped over like a bug.  Somehow, I managed to pull myself up onto the chair.  Tom stumbled back to bed.

This was a pretty devastating evening.  I knew I had deteriorated but not to this point.  I guess I need to buy one of those I’ve fallen and can’t get up devices.  I am so scared and frightened.  I WILL NOT BE IMMOBILE.  I WILL DANCE AGAIN.   I must be delusional.  The only thing to do is fight harder  Someone just told me today, in another matter, that my persistence paid off.  I guess I need to keep it up.  I am losing strength all around and crashing

Third Wheelchair Ride

Posted on by tresswann

This is beginning to be so unfunny.

My husband gives platelets regularly.  He has a high platelet count and is a universal donor.  He does it just because and has only used his accrued point one time to get a fleece that advertises the Blood Center.  H e went  mid July but they couldn’t do it as his blood pressure and pulse were too  high. H e’d had a steak dinner the night before and had taken his blood pressure meds too late.  Two weeks ago, his pressure was alright but his pulse was still high.  We started to monitor it but it didn’t go down.  In the middle of the night he told me his heart was racing.  I made him call the doctor yesterday and she said ER.  We called urgent care, same answer ER.

We went.  By the time, we arrived, parked and he helped me struggle over, his BP and pulse were catastrophic.  Of course, I walked for crap because I was so nervous.  Now going to the ER here is not a new experience for me.  My first time was 11 years ago, when Justin’s SUV was totaled.  He called to say that the driver’s side was destroyed.  OMG! You weren’t driving?  No, when I saw the truck coming at me, I jumped into the passenger side.  I had to take that call as Tom went completely white.  So, the evil stepmother, aka me, insisted on ER.  He walked out but ended up there 2 days later anyway.

My next visit was 7 or 8 years ago.  I had a restraining order against him for drinking and he was seriously out of control.  I locked him out and he went to his sister’s.  He wanted help but was drinking even more there.  I walked out of work in NYC, dragged him into the car, held onto him as he tried to jump out while it was moving and dragged him into ER.  I can’t remember his blood level alcohol at the time except that it was astronomical.  There was a warrant out for his arrest but he was able to get into rehab.  It was not successful.  Other visits ensued.  One time, they had to guard him and put him in restraints.  Another time, I just checked him in and left.  Twice, after his cancer operation, I had to take him to Stony Brook ER.

All of these times, I wasn’t scared.  Ok, 2nd Stony Brook ER, I was.  However, throughout all of these and his cancer operation and his hernia operation, I worked.  I had that laptop and kept on going.      I can be a monster in that regard.  We needed the money and I needed the distraction.

The difference last night was that he was conscious and aware.  I wasn’t working either.  The other times, we pretty much knew what was wrong.  Last night they did not.  And before, I could always walk.

Alright, for his hernia operation in 2015, my brother-in-law helped.  At the hospital, they thought I was the patient.  A friend of mine was in the ER a few weeks ago and again, everyone thought I was the patient.  Last night, they gave him the visitor pass.

They announced at 7 pm that all family members/visitors had to leave the ER.  This was going to be extremely difficult for me.  I knew I couldn’t make it to the car at all by myself.  They told me they could not release him.  We thought someone could just give me their arm and I would go and wait for Justin.  No Security was  hell bent on getting me out of there.  They provided a wheelchair even though I explained I had only been in one twice before.  The guard even asked me if I could move my feet.  Uh, that is the problem.  I protested as I didn’t want Justin to see me like that.  The guard literally left me in the waiting room.  Luckily, I was able to navigate out of the chair just before the kids came.

They took me home.  I am appalled at my deterioration.

Apparently, Tom may be operated on today. It’s a simple procedure.  At least, that’s what they tell me.  Hopefully, I will be able to get help there and back.

I am so scared this time.

Tomorrow is our 13th wedding  anniversary,  Recently, I was contemplating life without him.  I realize that no longer is an option.

 

Second Wheelchair Trip and Further Revelations

Posted on by tresswann

Yes, I had my first wheelchair  experience in April at Mt. Sinai

In June, I had another, also at Mt. Sinai.

I was going  in for my second round of Rituxin.  Mentally, I was in much better shape.  I knew what to expect and did not anticipate the treatment would result in death.  In fact, I was looking forward to it, as this time I had a plan.  I was working, it was summer and I was going to go to the gym and pump that stuff through my system.

I  had a later appointment but we went in earlier in the hopes I could be squeezed in early.  Despite working, I had been walking less so I was fatigued when we came off the     bus.  Plus, I was naturally nervous and that impacts my walking as well. We staggered into the hospital.  The security guard came bounding over, asking if I wanted a wheelchair.  No, they have a great ramp to the elevators.  Then we walked the labyrinth to the treatment center.  It looked different.  T went to check me in as I sank into a chair.  A male nurse came over offering a chair.  I explained I didn’t need one to stagger the last few feet to lay down for 6 hours.  I heard loud voices.  Apparently, the treatment center had moved to another location, a couple of blocks away.  T was demanding  a chair at the same time the nurse was telling me that’s what we needed.  In April, I was put in a chair for speeds sake and whisked along underground passages.  This time it was outside sidewalks in NYC.  I became this little old diminished lady in a wheelchair.  No selfies.  It was bumpy and I felt less than.  Less than the full person I believe I am.  People were looking over my head or avoiding looking at me.  Ok, maybe it was in my mind.  And yes, at that point I would really  have had to struggle.  The pavement was bumpy, tilted and crowded.

The elevator was horrible.  Again, it must have been me but people were too kind and considerate.  Everyone loomed over me and I felt tinier and tinier.

When we got to the right floor, T handled just about everything.  It was, as if I wasn’t competent.  I felt very, very small.

I was even wheeled to the waiting room. I hated feeling diminished.

The treatment moved forward and I was able to walk well to the bus and through the station.  I had problems and continue to do so on the station stairs.

This is not going to be one of those cheery and then I overcame or realized what a blessing.

What I realized was unless I get better that I cannot work in NYC.  This is huge as that’s where the money and the opportunity is.  I see things that I want to do and my pre-condition brain says “what fun. Let’s do that.”  And then I realize not happening!

When I was first diagnosed, for one brief moment, I thought I was going to be a poster child.  I would learn all there was to learn and just be.  First thing I received was a brochure with a woman on a scooter.  I turned off immediately.  I wanted no part and still want no part of that type of acceptance.  The spectral leg, the cane have all set me back and pained me deeply.  They are physical representations of my limitations.  I have to accept them, for now.  But now is becoming an infinity.

True confession:  I was in DollarTree last week.  It was early in the morning and I should have been at the peak of my energy level.  Plus, give me a cart and I usually rock.  This leads me to the walker that I ordered in January that stays behind the den door.  Anyhow, I was destroyed.  I could barely walk.  For a brief moment, I wanted a motorized cart.  I couldn’t believe me!

Everything is not all good all the time.

I am happy to say I am still fighting as hard as it is becoming.  Some days, it seems insurmountable.  I hate being confined to my body.  Guess, I need to work on that spirit thing.

Oh, and by the way, my doctor said she noticed a spiritual change in me.  She has me  confused with someone else.  There is nothing grateful or spiritual about this!

End of pity party, for now.

 

Firsts and Hopefully Lasts

Posted on by tresswann

I participate in research studies.   It’s a way of making some good come out of something less than positive.   And it’s also the way I can get MRI’s.  When I originally had insurance and this started. My first MRIs cost me thousands.  Then I had Affordable care and it was reasonable.  I am back to corporate insurance and a too high copay.

This study also focuses on the neurologic.  Usually, I do those, the blood and the physical first and the 90 minutes or so of MRIs last.  This time it was reversed.  We needed to be at MRIs first at  9a.m.

I am spoiled.  Since I have started working on LI, waking at 4:15 a.m. no longer appeals to me.

I was better able to get to the bus uptown this time.  However, I realize that I am no longer able to work in NYC.  This is extremely disheartening.   We took a slightly later train and ran a little late.  It’s two blocks from the main office to the MRI.  Unless you have issues walking, you don’t realize that the sidewalk is slightly slanted and is not completely flush.  Also, my legs don’t work when I am upset.

I said to Tom “I think I am going to need a wheelchair to make it to the MRI.”  Now, they always offer and I always refuse.  Once,  years ago, I told him I needed a chair and  he told me if he had to carry me, it wasn’t happening.   He said,  I was going to tell you that we need one but thought you would be mad.” Oh well.  When we arrived, the research assistant said, “let’s get you a wheelchair.”  I nearly burst into tears. Ironically, there’s an underground passage.  I could have walked it but we definitely would have been late.  And it’s longer.

Now here’s the funny thing, I fall asleep during MRIs.  Yup.  No problems.  See, no one can get me there.  No one can call me or email me.  They tuck me in with a nice blanket.  Could a girl want more?  I was signed up for a special one. This time, they made me wear two gowns.  LUCKY!  So, now is the fun part.  I don’t have spectral leg, cane or glasses.  They have to carry me onto the machine. I get my nap.  They pull me out.  I am used to this drill.  They usually reposition  me and roll me back in.  Not this time.  We do the carry thing into another room and machine.  Ah, that explains the double gown!  I settle in to a new machine.  They pull me out again.  The machine is broken!

Back to the wheelchair.  And onto the neurological tests.  Well, first I do the physical .  My now usual stumble. The thing with the neurological tests is they are usually the same.  They read a list of objects and I tell them the list back.  I am really good at this. I remember from year to year. LOL.  This year they changed the list.  Hey, I aced it, no mistakes.  There are other tests which I also remember.  One I particularly dislike  is 6 shapes that you need to sort into 2 groups of 3.  I miss some usually.  This time I did more combinations than ever.  My mind is not declining.  Researcher said she won’t tell me what I missed ’cause I’ll remember next year.

Being in a wheelchair was  weird. I felt diminished. I was lower than everyone.  People moved out of our way. Moving without doing anything was unsettling.  On one hand, it was stress-free; on the other it was awful to think that I had come to that.

This cannot continue.  I cannot give up.  I don’t know what to do.