Look, Ma. No Pain. Teeth

My mother had an extremely high tolerance for pain.  She used to have her  teeth drilled without Novocaine.  She also claimed that childbirth pain was vastly overrated.  Period pain and cramps?  In your mind.  She worked with someone who had to take Percocet monthly and Ma just disdained that.

Me?  Cavities- I used to get gas and Novocaine!  Teeth cleaning – numbing agents.  I was so not her.  In fact, when she finally admitted to pain with osteoarthritis and osteoporosis and cried, I was terrified.

My husband also believes that pain is mostly in the mind.

In the last 6 months or so, I have been in pain but due to my upbringing, not really acknowledging it.  Following my mother’s  lead, I have just looked at it as part of my new reality.

I started taking medical marijuana a month ago (more in another  blog).  My impetus was based on hearing people report improved mobility.  Yeah, I mentioned pain but just to justify the prescription.  Guess what?  I found that it numbed or lessened my pain.  My right leg is the one most effected by this condition but my left knee feels like it is a football.  Even with the MMJ, it has been a constant throbbing presence.  I have been unable to concentrate.  It has impacted my ability to do everyday things.  Some days everything just hurts.  I am my mother’s child.  I soldier on.

One of the areas that has been hurting is my teeth.  I have had two huge holes in my teeth.  I chipped a tooth a couple of months ago and it has just rotted away.

Let’s talk about teeth and my condition. Due to losing my job (I didn’t lose it; they let me go), I found myself with  a huge open hole in one of my teeth.  I thought I couldn’t afford to do anything about it as I was trying to keep three households afloat on unemployment, severance and savings.  I am convinced that this was the gateway in for my condition.  I did have a huge infection.

I had my first cavity at 18.  My great-aunt lost her first tooth at 92! As an adult, my teeth continued to deteriorate and I have had root canals, crowns, implants and extractions.  With one of the first extractions, I was given Vicodin.  Amazing!  I was still going to Zumba and did really well.  I taught a class that literally always gave me a headache with no stress.  I told my neurologist.  She laughed and said it was addictive.  I said at my age, “Who cares?”  She gave me Baclofen.  It didn’t hack it.

I went to the dentist a few weeks ago.  I allegedly have dental insurance through ACA.  According to that dentist, most of my mouth needs extractions and  root canals.  Of course, insurance either denied or referred to a subpar clinic.  Once I acknowledge my mouth, I take care of it.  I have learned the hard way that dental is not the place to scrimp.  I headed back to my favorite, expensive oral surgeon. My MMJ supply is also running out and I need to go for a refill. My thinking was that I could make it till next week because I would get Vicodin.  Well, he took out three teeth last night.  Two next to my upper front eyetooth.  No Vicodin!! Just regular ibuprofen.  This surgeon is excellent.  No pain.

Of course, me being me, I went for sedation.  So, last night, no pain, just blood.  And in addition to the Vicodin, I have been looking forward to antibiotics.  I know I have an infection running amok in my body so drugs will kill it.

The brilliant thing is this morning I woke with NO PAIN! NONE!  Not my legs, not my head, not my shoulders, not my teeth.  I am walking more freely. I can almost type the way I used to.   I can actually concentrate!  Bad news is this probably won’t last.  How can I get this effect legally, cheaply and regularly?

Ocrevus 2nd Round, Yukons and Skinny

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

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?

 

Musings on the NP Visit, UTIs, Pain and the Perfect Storm

Male discretion advised – details of my visit to my ob/gyn Nurse Practitioner disclosed.  No salacious details.

I have been seeing my nurse practitioner for around 20 years.  I was brought up to believe having these exams were responsible, important and natural.  One year, when I was out of work without health insurance and no money, my parents gave me my annual exam as a birthday present.

For me, the two worst parts of the exam were being weighed and the Pap smear.  I had a botched one once and bled for days.

I have followed R from her original practice to a newer one.  In this practice, she only sees patients one Saturday a month.  She has seen my  deterioration.  I don’t focus on it and have a tendency to actually forget I am less able.

I wake up Saturday morning with burning pee.  Good thing I am going to the doctor.  I ask my husband to remind me to tell them I need a test if I rush in and need to use the bathroom.  I use the walker because it will make life easier.

I tell the nurse I think I have a UTI.  No problem, we’ll get a sample.  The exam room is so small we have issues maneuvering the walker.  She leaves me with the cup and walks out.  The bathroom is not handicap friendly.  I cannot believe this as it is an ob/gyn practice and what about the big pregnant ladies?  I then go through a series of contortions to sit, hold the cup and collect the specimen without falling, dousing myself with urine, or dropping the precious sample.  Whew.  Mission accomplished.  Next removing everything including spectral leg.  Easy-peasy.  Uh oh, I forgot getting up on the table.  Problem, the step attached to the table moves. It slides in and out.  This is not happening.  Now, another thing my mother did for me is that I don’t have nudity/body issues in medical settings.  I find the whole gown thing on the annoying side.  My husband has explained to me that I must be aware of others discomfort.  Point taken.  R comes in and I show her the situation.  She wants to call for help.  I explain if we hold the step stable and maybe give my leg a boost, it will work.  Well, we did it but now she wants to add another gown for my modesty.  The good news is that I have aged out of the Pap smear.  I can’t begin to imagine how that would have worked.  She does a dip on the specimen and says you definitely have an infection.  Do you want antibiotics now or do you want to wait 48 hours so we know exactly?  NO! DRUGS NOW!  She phones it in and high fives me as I leave as we didn’t do the weighing thing and I tell her my vastly reduced weight.  I am almost 50 pounds lighter than when we first met.  I inspired people after dropping the first twenty.  I don’t really mind that kind of inspiring as opposed to the disease inspiring.

We stop to go grocery shopping on the way home.  Pharmacy is only a mile or so from the store so we ring and it will be ready in half an hour.  Fine, go home, unpack groceries, check email.  Ok, let’s go.  I try to stand up from desk and can’t straighten up and am in such excruciating pain that I scream.  Tom comes running in.  No, I have not fallen.  It’s my back.  Get me two Advil.  I creep out to the front room.  I have a very tiny house so we are talking less than 20 feet.  I sit down.  I try to stand and scream again.  My vision is going black and I am seeing stars.  Tom’s reaction?  I had a sledge hammer fall on my hand and didn’t scream.  My reaction?  If I had the f*ng sledge hammer right now, we’d see about that.

There is no way I can drive to pick up the ‘scrip.  Tom has no license.  “how come this is happening to you? You were fine this morning.”  Actually, my left leg which is the allegedly “good” one was really wobbly.  Next, as I am thinking how I can get the meds, and not move, and not cry, he announces his cellphone is broken. I tell him to charge it. It doesn’t work.  “We’ll have to go to Apple.”  Are you f*ing insane?  I am in excruciating pain, can’t get meds and you want Apple?  I text my stepson who was supposed to be away for the weekend.  Luckily, he’s home and says no problem I’ll pick up and be there within the hour. Dad gets on the phone and tells him his phone doesn’t work.  Kid laughs and says he’ll make an appointment.

I am blessed with my stepsons.  He calls from the pharmacy to confirm my birth day.  I ask him if needs the year and the pharmacist laughs.  This is good.  The kids know that I am older than their Dad but not by how much.

I can’t take the meds till evening.

I had Vicodin once for oral surgery.  Everyone laughed as I had to use them at work, and taught a class that usually gave me a headache.  I did a great class.  There were leftovers so I saved for a rainy day.  Tom had an operation afterwards and ran out.  He was supposed to replace mine.  He didn’t.  There were no painkillers in the house.  I took an extra Baclofen.  I am resourceful.  One of the kid’s friends smokes lots of weed.  He was ecstatic some years back when he went into a cabinet for a glass and found a baggy of catnip.  “Mr. and Mrs H…””Hate   to disappoint, it’s just catnip.”  Eventually, we told him he couldn’t visit us if he was stoned,  I am thinking of Meghan Llewellyn(@BBHwithMS) and her recent journeys with cannabis.  Two thoughts, if she has been dealing with pain like this, is cannabis enough?  And, was what was happening to me associated with my condition? I’ll do anything to ease this.  However, step was supposed to go out of state with his friend, so no relief there.  The last time I touched weed was in 1994, Good Friday.  Before that, 1980!  I only used it when I was drunk.  Bad combo as I don’t come off the ceiling for days.

My mother had a high tolerance for pain – childbirth was overrated, teeth drilled without Novocain.  I so do not take after her.  The pain gets worse.  I do remember stepson gave me acupuncture cushion.  A little relief.

I take the meds and it also begins to ease a little.  However, I cannot lift my left knee or bend it.  I am scuttling around the house sideways.  I can’t step over the saddles.  Tom has to help me into our  high profile bed.   I get up in the middle of the night and have rolled over.  Crisis averted.

So, this condition has seeped into my life.  And everything is not MS.  Sometimes an infection is just an infection.  Of course, the aftermath is worse.  Losing exercise is harder to regain.

It’s amazing how much we take for granted and how much something as simple as bending a knee means.  It’s a couple of days later and I am still a tad twingey but I can move my knee; I can stand up.

What happened?  I think it was the perfect storm of adjusting to the new Frankenstein spectral leg and the UTI, all exacerbated by my condition.

Plan?  I need to have access to MMJ!