Yet Another’s Doctor Visit – Digress and Progress

Every time I decide I am going to break up with my doctor, I fall in love with her all over again.

I went into NYC  Friday morning for a belated visit.  Originally, she wanted  to see me in June before my infusion therapy.  It didn’t happen.  Then came summer with the anticipated railroad problems leading us to September.  I cancelled last Monday because it was mid day, bad weather and the UN Assembly was in session.  Glorious cool weather Friday.  I wore my macrame type sandals.  It was a bit cool but they are comfortable plus I knew they wouldn’t fall off if I had to go up or downstairs.  I was walking for crap.  We got into Penn shortly after  7:30 a.m. so it wasn’t horrifically busy.  I was frightened.  If I hadn’t been holding onto Tom, I would have been  knocked over or fallen.  He had my back for the escalators which have become another ring of Hell for me.  It’s one thing getting on.  It’s a whole other thing getting off.  Then we had to cross 7th Avenue.  Yes, I was already shot before I reached the bus.  I started to become agitated and weepy as it was clear to me that NYC is gone for me.  This is where I worked.  This is where I can make real money and do something that I like.  And it’s more than that.  It’s the stimulation of the city – the clothes, the food, the lights, the culture.  It’s closed to me.  I can no longer do this.  I struggle onto the bus. Tom has to lift my left leg to get me on  The bus driver is awesome.  She asks where I am getting off so she can make sure she pulls all the way in.  I take a disabled seat.  Somewhere in the 40’s, 50’s a sandwich delivery guy sits next to me with huge delivery bags. Uh, how am I going to manage getting out?  Just breathe! Then in the 60’s a man with a scooter prepares to get on.  My bus driver ejects the delivery fellow and the older lady across from me.  “You stay”  I am amazed when someone tries to push past him as he is leaving.

I am the first appointment at the doctor’s which is good.  She calls out to me as she is coming in with her coffee.  She spends nearly an hour with me.  Sometimes, I am techy and sometimes I am so not.  I recently figured out how to make Notes on the phone.  So, I’ve been collecting all my concerns in a format that is accessible and legible.

First off, we admire my sandals as I tell her that I need a new spectral leg.  She is referring me to a rehabilitation specialist.  He will look at cane, spectral leg aka brace, physical therapy and the way I actually walk.  This is good.

Bad, she thinks I should use the walker.  The  one that has been sitting behind the door, bought with an Amazon freebie.

She tells me how I am always so well put together and how important it is for my health.  I have on the beaded and embroidered 3/4 length pants that the orthopedist thought when the beads showed up on the scan, that he had discovered a whole new syndrome.  My therapist also says I am always put together  and it’s good for my health.  I miss getting dressed for work.  I open my closet and mourn.

I have low blood pressure.  My  late former in laws used to marvel how low it was without medication.  Due to Tom’s recent cardiac adventures  and his obsessive nature, blood pressure is taken all the time.  We even checked his machine against his surgeon’s and it’s fairly accurate.  Mine is way, way low.  Doctor says, “Are you dizzy or faint”  No, that is my old stress reaction.  I turn grey and my eyeballs roll up in my head.  Doctor says, “What we say about people like you around here is that you are going to live forever.  You are good.”

We talked about my drugs.  Yes, she wants me to stay with the alpha-lipoic and the Biotin.  Okay, as I have said before I have issues around my nails.  They were bitten and ripped to the quick for years.  A few years ago I decided  enough and grew them.  They have been  long and hard since then.  Last October I had to go to the salon to have them cut.  This year, they are snapping like crazy and my hair is visibly thinning. Salon’s verdict on the nails – maybe they are too hard.  Doctor’s question – what are you eating? Ah, here we go – not enough protein.  This has always been challenging for me.  I am so not a meat eater.

Now, I find this talk of food extremely interesting.  When this journey started, I asked her boss about food and he pooh-poohed me.  I took myself and my money to a nutritionist and she gave me what I thought    was an insane diet and other doctors subsequently agreed.  If she had only said, “This is the Swank Diet and it’s been used since the 1950’s.” I would have signed up.  As things progressed, I discovered a  bunch of different ways to eat that can address this.  Two years ago, I stopped gluten for months and noticed the difference.  Alas, I’ve fallen off the wagon.  Recently, I saw that the institution that treats me has done food studies.  In case you haven’t guessed it does make a difference.

My husband used to work at nights.  He’d wake around 11 and I’d go to bed around 9.  The last night he worked, I got up to go to the bathroom shortly before 11.  I remember feeling very hot and not so well.  The next thing was Tom shaking awake from a really great sleep.  He awoke to find my body in the hall.  We have a very tiny house.  There was blood on my head.  We never knew if I passed out and hit my head on the way down or hit my head and passed out.  Lately, I have had episodes when I experience the same kind of heat and my glasses fog briefly.  And the answer is still MENOPAUSE!   She suggests also that I drink more water.

Now all this caused me to start thinking about my period, menopause and my affliction.  People always laugh because I know the exact date it started.  Easy, because it was Halloween.  So, 40 years later in October I decided enough is enough.  I willed myself for it to stop.  Wait a minute.  That’s when I became symptomatic.  Something to ponder and research.  Not sure where it will all lead.

We are now at the 25 feet walk.  First time, when it started, I did this in heels.  I tell her I walk like a toddler.  She tells me I walk like me.  So, not a good thought.  This is the  first time I have ever done it with a cane.  I am terrible and slow.  I miss walking  I miss the speed, the breeze, the joy.  Walking was how I figured things out.  It seems like everything is being  taken away.

Now, to the inspirational part, and I hate the  inspiration part, attitude counts.  I told the doctor about the woman I had met who was diagnosed this year and appears to have given up.  She is anticipating the worse – making arrangements for ramps, etc.  Here’s a difference, I told the doctor in the last few weeks, I seem to be experiencing MS fatigue.  I used to be relatively tired all the time, waking for work in the 4  a.m. hour.  This is different.  It feels like dying, I guess.  It is the most peculiar sensation.  “Have you ever considered a nap?”   I am my mother’s daughter.  Maybe, just maybe if you have a high fever.  Though I have memories before this marriage of drifting off during a Saturday afternoon radio program.  She agrees that our mothers were the same and insists I need to nap.  Here’s the thing – if I feel like I am dying, the last thing I am doing is closing my eyes and lying down.  And my life is short and limited enough as it is.  I will not waste what’s left of it napping.  The other woman doesn’t nap.  She stays in bed all day! My doctor admits that attitude is important.  She starts to tell me about a patient group.  I cut her off.  I am so not interested in people who LOVE their scooters!  Nope, this is cool.  These ladies attend all the drug dinners for free, whether they can or cannot or want to take the drug.  They get a paid night out to hang with their friends.  This is a good idea.

I leave with recommendations  for disability, physical therapy and Ocrewhatever (there is a small risk for breast cancer and I have the dense ones.  I always picture them as saying d’uh?)  I also leave more determined than ever to beat the odds.  Why not?

 

Second Wheelchair Trip and Further Revelations

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.

 

Doctors, Drugs, Disability

Back at the doctor’s Friday.  I was hoping for her to be able to get

Ocrelizumab.  It’s not yet available.    There is a similar drug but it is not approved for my disease:

Rituximab.

It’s a 5 hour infusion and then in two weeks, another one.  Every 6 months.  So, here’s the thing, side effects.  I could get shortness of breath and they slow the drug.  I could get more colds and infections.  Long term use might lead to cancer.  And of course, death though rare.  I HATE  needles let alone I.V.s.  However, I think I am going to suck it up and try.  I looked it up and it’s chemotherapy.  Kinda  scary.  Also, it’s been around for years.  The problem is insurance may not pay as it’s off label so I may have to wait till next year for the Opera.   Has anyone used this?  What do you think?

 

The other thing is Biotin.  I had obtained it just before I was let go and at $148 a month.  It wasn’t happening.  There is a new source and it will cost $60 a month.  It’s worth a try – $2 a day. Apparently, this looks good. Anyone use it?

 

Now there’s other things going on.  I have had a hard week. I got rejected again for a job.  It’s one for which I should have been a contender.  It was exactly what I used to do.  I had to create two presentations for it.  I was notified late on Friday for Monday.  It was my birthday and New Year’s dinner, too.  I put in hours and it was good.  No go.    It was across the street from where I was and it was difficult for me to walk there.

So, at this point, it appears that I am no longer going to be able to work in corporate America again.  I have hit the trifecta – woman, older, disabled.  This is so wrong.  I can’t even begin to address this.

 

The doctor is also in NYC.  I couldn’t do it without my husband.

I have collapsed recently in the bedroom without hurting myself but scary.  My balance has also been wobbly.  The doctor says that’s due to my weakness, not the drug I take.  My fingers are weaker,  My walking has gotten worse.  My theory?  Not going out to work every day has taken its toll despite the gym.  And she agrees, stress of not having work is negatively impacting me.  She’s finally admitting stress can be a factor.  I deal with extraordinary stress.  I have just started counseling.  In terms of stress and we are only up to 2004, she thinks it’s a lot.

I asked my neurologist about going out on disability.  I expected her to pooh pooh it.  NOT!  She said who deserved it more? I have worked for decades.  I don’t want to do this. I am going to have to think about this.

On the upside, my brain is fine.  She says that will be fine and she’s never seen it change. See, when I am sitting down I feel like me.  She tells me this is me.  I think NOT!!

I need to reflect and move forward.

May 2016 Check In

How did I feel this past Month?

On the blue side, with ups and downs.  The job thing is destroying me.  I get interest and interviews and then I crash.  April marked 6 months out of work.  It is now going to get even harder.  Yes, I am a mature woman with a gimp, a very stylish walking stick and not cheap.  On the upside, I connected with Meg’s blog http://www.bbhwithms.com/

Her blog is a must read and has given me so much hope.  It’s great to know there’s someone else out there.

I am reflecting on how I got onto the wrong track or the track I didn’t want to end up on in my life.  I walked away and now I can’t walk.  Something to ponder.  So, how much of my job situation is attributable to me.  Some, I think.  I became just a tad complacent.  I am looking back in order to move forward.  I feel time catching up with me.  It’s finite.

What did you do for yourself this month?

Still playing arts and crafts.  I did take a finger knitting class.  The only other attendee was a great grandmother who bent over and accidentally mooned the whole store.  I am reading more which gives me joy and peace.

I also have started playing with more smoothies and a reset detox.

What did I eat this month  and how did it make me feel

Well, a definite emphasis on smoothies.  I expanded my repertoire.  I also did a Simple Green Smoothies Thrive  reset hoping to get me back on track.  I definitely deflated.  I couldn’t eat all the food as I was too full.  I paid no attention to the different autoimmune diets but it covered the bases – no sugar, no gluten, no caffeine, no dairy, no meat.  I could definitely eat this way.

Did I exercise?  What did I do?  How did it feel

No Zumba but more gym time.  And I have the new Fitbit Alta which is helping me with my steps.

For whom or what are you grateful?  What matters most in life?

I am so grateful for my friends who keep my head above water.  Every night I list gratitude for at least these five things:  friends, mobility, possibilities, wherewithal, creativity

Do I have a higher purpose or driving force in my life?   Make a mission statement

Getting closer to that mission statement,  My grandma told me (it was Shakespeare but who knew?) To thine ownself be true.  Tis like the night, cannot be changed.  That works for me

Conventional medicine  Still just Ampyra and Baclufen.  And my doctor says there is a drug that will be available in the fall that will work for me.

Symptoms – Hands are still  getting weaker.  My hands and feet are multi-colored.  I have an appointment next week.  My neurologist looked at my hands and said Raynaud’s.

What symptoms are most troublesome  – Independence and mobility.  Hands not working

Do I blame myself for things – Yes, I am still believing it’s food, stress and exercise.

How is stress level?  It’s amping up with no work in sight.  Summer is coming.  Ouch.

What can I do tomorrow to make it better than today?

Never give up! Never!  Defy convention.  My mother always said I conformed to non-conformity, so be it.

April Doctor’s Visit

Well, apparently I was at the doctor’s exactly a year ago and again today.

So,  I am a tiny bit stronger and a tiny bit faster.

I participated in a research study there a week ago.  My MRI is basically the same which is really good.  I know from the mental tests last week that I am more than OK that way.  She reiterated that I have spinal arthritis.

Now,  she  says that I am a tiny bit stronger than last time and a tiny bit faster.  This so works for me.  The gym is working.  She says I need to continue  three times a week!  And I do need to continue with Zumba.  I was thinking of stopping because as much as I love it, it frustrates me.  I seem to be able to do less and less.  When this mess started I used to be in the front row.  However, she agrees that the social aspect is important for me.  I’ll go through the end of this season and see.

On the bad side, she says it looks like Raynaud’s.  My fingers have been turning white.  Just another thing to deal with.

On the up side, there is a new drug that has been tested and works with my symptoms/conditions.  It should be available when I go back.   Down side – it’s an intravenous and twice a year.  We’ll talk about side effects later.  My plan  – get stronger so I don’t have to do this.