Maybe you’d like to step outside?!?

Yes I did say it,

yes I wanted to fight…..

BUT those were NOTthe first words that were said

Let me go back and start at the beginning.

One of my grandson’s was diagnosed with ROP or Retinopathy of Prematurity.  A doctor from Mayo clinic describes it as this:

Retinopathy of prematurity (ROP) is an eye disorder caused by abnormal blood vessel growth in the light sensitive part of the eyes (retina) of premature infants.

ROP generally affects infants born before week 31 of pregnancy and weighing 2.75 pounds (about 1,250 grams) or less at birth. In most cases, ROP resolves without treatment, causing no damage. Advanced ROP, however, can cause permanent vision problems or blindness.

In ROP, blood vessels swell and overgrow in the light-sensitive layer of nerves in the retina at the back of the eye. When the condition is advanced, the abnormal retinal vessels extend into the jellylike substance (vitreous) that fills the center of the eye. Bleeding from these vessels may scar the retina and stress its attachment to the back of the eye, causing partial or complete retinal detachment and potential blindness.

We were informed that because he had to be on oxygen, his risks for it progressing further were HIGH.

Well that’s great….. He needs oxygen to live, but keeping him on oxygen can cause him to go blind?!?!?!?  WTF?!?!

There really was no decision to be made.  He needed to remain on oxygen, steriods and the nebulizer treatments to live.

My daughter was told that she would need to continue to follow up with the pediatric ophthalmologist biweekly to monitor his condition.  ( add that to the list of specialists the boys needed to see weekly, what’s one more doctor?)  OF COURSE she was going too.

The next appointment was January 31, 2019.

If you google record breaking cold for my area you will find the date January 31, 2019

The city hit a new record low at 6:45 a.m. when the temperature hit minus 30, making Thursday the coldest day since the National Weather Service began keeping records in 1905. And then the temperature plunged even lower a little later in the morning, to minus 31 degrees without the windchill factor. (which for the record was -60)

Knowing that the temperature was going to be so low, Thing 1 called the ophthalmologist’s office to reschedule the appointment.  I was sitting across from her at the kitchen table when I heard the person on the other end of the phone say, “YOU DO REALIZE YOUR SON COULD BE GOING BLIND DON’T YOU?!?!?”

Let me pause here for a moment to let you absorb that.  I know I needed to.

OH HELL no she didn’t just say that! 

Thing One gave me the look of “OH GOD….please don’t say anything” as I tried to climb over the table to give that voice a piece of my mind.  The voice continued with , “well you were supposed to come in yesterday and you missed that appointment.”

“Um no we weren’t and no we didn’t.  I am looking at the appointment card in my hand and it says 1/31/19 at 11:20 am.”  This Bitch, yes I said BITCH, wanted to sit there and argue about this.  Did I mention -31 degrees outside?!?!?!?  Most of the city ended up shut down that day.

I couldn’t control my anger so I told Z to go help her while I walked outside.  (yes in the freezing cold I went outside)

When I came back in the appointment had been rescheduled for that Saturday morning and I was going with.

I’m actually getting angry again as I write this and I’m not even close to being done.

When we went to the appointment on Saturday, I recognized her immediately by that voice I will NEVER forget.  Her name is Shayla. I promised thing one I would not say anything to Shayla directly, I was only going to talk to the doctor.

While we were in the waiting room, I started talking a another mother that was there with her 4 month old triplets.  After Shayla was finished putting eye drops in her babies eyes and walked away, the woman shuddered and said, “Man I hate that bitch”!

Of course I had to ask her why she felt that way, and share why I was in total agreement with her.  It turns out the woman, Jessy, had also called on Wednesday to cancel her childrens’ appointments for the 31st because of the weather.  Shayla proceeded to tell Jessy that she would call social services if she missed the appointment.

Man was my blood boiling! Thing One and I exchanged contact information with Jessy.  This was far from over.

Unfortunately, our appointment with the doctor was rushed since he was getting ready to leave the country.  The boys were both screaming after having their eyes examined, and I could not get to the doctor without Shayla, so I said nothing.

That’s on me. 😦

When we left the office it was decided that I would come back by myself, after she had found another doctor for the boys.  The week that it took to find another doctor felt like years.  While I was waiting to go back I did everything I could to find out how to file a formal complaint and an investigation with the nursing board.  I wrote a letter to the Dr.s office manager, and I told every other specialist that we had to visit for the boys that week what had happened to encourage them to maybe not refer patients to that office.

Once thing one found a new doctor. I immediately got in my car and went back to the Dr.’s office.  I’ve been told that I wear my emotions all over my face, and I have a pretty scary look that could kill.  When I approached the desk with my letter and complaint forms in hand I asked to speak with the office manager.  I think I scared that poor girl.  She started fumbling around trying to place a phone call to reach her and then left to try to find her elsewhere in the clinic.  A second person came up to me to ask if she could help.  I replied, “I am waiting for the office manager”.

Everyone from the reception area started offering suggestions on where she might be and offering to go find her, and then Shayla walked up to me.

“What do you need”, she says…….

I thought…..seriously?!?!??! and I replied

“Maybe YOU would like to step outside”?

“Excuse me?”, she said.

I repeated, “MAYBE YOU WOULD LIKE TO STEP OUTSIDE”?

Sadly that was it.  All of the staff from the office suddenly surrounded her and ushered her from the room.  The office manager miraculously  appeared and shuffled me into a conference room.

I repeated the entire story to the office manager including what I had learned from Jessy. I gave her the letter I had written and learned that the BITCH, I mean Shayla, was not a nurse but rather an eye technician, so there was no formal complaint process and no nursing license to go after.  😦  Kristie, the office manager apologized and said she would look into the matter with both my daughter and Jessy.

THAT’S IT!  She did call to follow-up my daughter and to hear the story from her directly, but not to offer an apology.

I don’t feel that there is anything else I can do.  I was not the patient.  I’m not even a legal representative of the patient.  Some people should not be in the services field at all.  I hope if anyone treats you this way you fight for yourself.  I hope that my daughter continues to follow up with this, although with the load she has on her plate it is doubtful.

This is my exercise in therapeutic writing

 

 

 

I’m in a Hurry (and don’t know why)

I was talking with a friend the other day, and commented that I didn’t know how I had “made it” to 45.  She responded saying, “no shit, I don’t know how YOU did it either”.  (note she didn’t say WE, she said ME) That’s kind of sad don’t you think?  I mean, I have never fought in a war, saved someone from a burning building, or performed any other heroic act.  Yet, for most of my life I have lived in a constant state of fight or flight.  I have always raced to the next bullet point.  There was always something else that NEEDED to be done.

Have you ever heard the song, I’m in a Hurry by Alabama?  I swear they wrote it for me.

I’m tired.  I really am tired.

The thing is, I’m not done.  Far from it.  But I am learning that if I continue at the speed I have been going my whole life, I am going to burn out….quickly.

I have pretty much lived my life by this quote,

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!”

Hunter S. Thompson,

While I do still believe this, maybe I don’t have to be in such a hurry to get there?

Being pretty immobile for the last month, while waiting for my foot to heal, has been a blessing in disguise. As I said before, Patience has never been my strong suit, but for my foot to heal successfully I needed to practice some.  I have spent my “downtime” looking for OTHER ways I could heal and become stronger as well.

On the physical side I am going to start with physical therapy.  That’s it.  No big get out there and  walk a mile a day again.  Baby steps.

I have also been reading and researching various diet or lifestyle changes.  Although I do hope to lose weight, my goal is more to reduce the inflammation in my body to see if I can reduce the number of medications I take.

On the Mental Side, not only did I reread all my posts from this last year but, I also took the time to relive the excitement of my daughter’s wedding.  I allowed myself time to dream about all the things I want to do with my future grandchildren.  Most importantly, though I finally allowed myself to grieve all of the tragedies of last year.  This isn’t to say I am done grieving, more that I have slowed down enough to let myself feel the pain, I had been running from.

It’s kind of cool that even though I thought recovery time from surgery was going to be unbearable and a bunch of lost time I would have to make up for, instead it forced me to pace myself, and I was still very productive.

I’m a work in progress! 🙂

S L O W L Y

but getting stronger every day!

 

 

 

Makes you wonder, “Who’s the Boss?”

“Kind of makes you wonder, who the boss is here, doesn’t it?” This was the last thing my neurologist said to my son in law as we left his office on Thursday.  You see, being on the MS drug Tysabri, requires me to perform three actions each year to remain on the drug.   I believe the three things I am required to do are CYA (cover your ass) for the doctors and drug company, though they present it as for my safety….shrug

A little bit of the back story here.  When Tysabri first came out on the market, it had to be recalled twice because the risks outweighed the potential benefits.  (it killed people)  Ok while it didn’t kill people itself, it caused some to develop PML (Progressive multifocal leukoencephalopathy (PML) is a rare and usually fatal viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).) which did kill people.   Either way it had to go.

Back on the Market

I began the drug shortly after it was released the 3rd time.  (YAH sign me up?!?!?)  SMH, actually for me, the risks were nothing in comparison to the potential gains. I was going downhill fast.  If you would like to read about how/why I started Tysabri, the first post of the “series” can be found here.

When they released the drug for the 3rd time, doctors had to require patients to meet the following conditions each year to remain on the drug.  The first is that they have to have an MRI of their brain yearly to look for signs of PML.  The second is that they have to have blood tests to determine if they are positive or negative for the JC virus.  Finally, they have to see their neurologist at least once a year to be reminded of the risks, and that the longer you are on Tysabri, the more likely it is that you will develop PML.

Having completed the first two requirements this summer, meant that I needed to see my neuro.  Not an easy feat considering I still can’t drive and his office is 2 hours away in Chicago.  Thankfully, my son in law said he would take me and spend the day with me.  (I really am blessed)

Z arrived right on time to pick me up.  During the two hour drive to the city, we discussed (debated) the pros and cons of Technology.  I will write more about that another day though.  Basically, I agreed to let him tell me about some apps that may make things easier for me, if he agreed to let me play devils advocate about the potential risks.  I think we both learned somethings.

The wait to see my doc was short.  He came to the waiting area and said, “C’mon Grace follow me”.  He didn’t notice my boot until, he turned around to see how I was walking.  (nothing like a having the pressure of having someone judge your balance as you try to balance) smh  He asked, “What happened now?”.  I briefly told him, he shook his head, and we entered the exam room.  We all sat down, and he said, “I was surprised to see you on the schedule, I never see you unless something is really wrong.  What’s going on?”  I chuckled, “just doing the yearly thing.”

First we reviewed the MRI of my brain.  There were no real changes to report, other than a little bit of atrophy and brain shrinkage.  (this also happens as we age, and was nothing major)  I did tell him about the newer symptom of “spins”, but only that I wanted him to put it in my chart, nothing else at this time.  He asked if I wanted to check disease progression in my spine with MRI.  (most of my lesions ARE in my spine)  I declined.

Next were the JCV test results.  The results were indeterminate.  (not negative or positive, literally indeterminate)  ok?  NEXT?

Doc: “You don’t want to talk about switching medications?”

Grace: Nope!  Thanks though

Doc:  “you do know that there is a new drug out  called OCEVERUS?”

Grace: Yep!

He began to shake his head again.  So I pulled the pamphlet out of my purse, and said listen Doc…let me be honest with you…. “I’m aware of the drug and the benefit of only having to have an infusion 2x a year, however at this time I’m just watching”.  I continued with:

  1.  I’ve done my stint as a guinea pig in the clinical trials for Botox
  2. It’s still too new, and carries the same risks as Tysabri.
  3. Basically the amount of time I “lose” getting this drug is the same amount I lose getting Tysabri ( Oceverus 2x a year 8 hrs each time vs.  Tysabri 12-13 x times a year 2 hours at a time)  Besides, I have a port in my chest that has to be flushed every thirty days regardless of whether or not it’s used, so it would be the same
  4. I also explained that I used my Tysabri infusion to meet my Medicaid spendown each month (but more on that another time)

He asked if the surgeon was going to send me to physical therapy after the boot came off.  I think I surprised him when I not only agreed to use a wheeled walker, (if Medicare will cover it of course) but that I would also like to go the PT, not only to aid my foot in healing, but to help with my balance and gait issues.  I asked HIM to write the prescription for both (pt and the walker) knowing that the likeliness of insurance covering both would be increased if they were given more reasons to approve it, (gait, balance issues, strengthening etc) than just “to aid in post op recovery”.  Isn’t it sad that it’s all a “game”?  Fortunately? for me I’ve been playing a long time.  SMH  We shall see.

Before I left, I did ask him for his opinion on the  various “diets” that are out there and how they may affect MS.  I know that I am not easy to “work with” sometimes, but that doesn’t mean I don’t want to do everything I can to fight this monster.  I just don’t believe that taking more drugs is the way to do it.

The diets I mentioned were the Wahl’s protocol, Paleo, and the Ketogenic diet.  I am not sure which if any I will follow, but I am in the process of learning about all three.  I have to admit that even a simple reduction in carbs and the addition of colored veggies to my to my normal SEE FOOD (see food and eat it) diet would be a good place to start.

Before we got up to leave, the doctor asked me if I would be willing to talk to other patients with MS.  I told him I do, all the time.  He was inquiring in more of a professional  capacity to which I responded that I was happy to  anytime, if he wanted to give someone my name and number, but never representing the hospital or his office.  (My use of the F bombs would disqualify me from that position.)

In closing,

The answer to the question of who is the boss…. I am!

It’s my body, my right, and my choice.

I am very fortunate to have a doctor that understands my feeling on this.  He also knows that while I do take some, I hate taking medications of any kind, and am always very reluctant to call, so when I do, he gives me priority.  I hope that if you are dealing with MS, or another chronic illness that you have found a doctor that is willing listen to and respects your opinions as well.

*The featured image is the inside of my daughter’s Beast for work….but doesn’t it make you wonder who is in control, or responsible?

ADL and Toe Mice

So Thursday’s post op visit with the surgeon didn’t quite go as expected.  That isn’t to say I am disappointed with the results, it’s just that he said something  I NEVER expected to hear….. EVER….

My friend Jeri picked me up and we, well she, drove to the doctor.  My appointment was at 2:45, we where shown to a room at 3:45.  (not bad as far as orthopedic visits go)  I climb onto the table and the nurse begins asking me what my pain levels are.  This is a trick question I am sure, because if I don’t walk on it and keep it elevated, my pain is pretty low on the scale.  After I have been walking around a bit, or letting my foot hang down too long it climbs quickly.  I told the truth…. kind of… I left out the part that I had been standing alot.

Do you want more pain pills?

I quickly answered, “NO!!!!!”, and pulled out the bottle of remaining pills that I had asking if she wanted them back.  I can not stress enough, that I really don’t like the way the make me feel ( mood swings, maniac, nauseated etc.)  and I NEED to be able to feel the pain to prevent me from overdoing things.  I agreed to take Tylenol over the counter as needed.  (in my opinion, advil is better at pain relief, but since I am a bleeder and it’s a blood thinner, I will stay away for now)

I took off the boot, the nurse removed the dressing, I took a quick picture, and then looked away.  The doctor, and a student came in shortly after.  As he pulled up a chair beside me to examine the stitches, he asked, “Did your father tell you what we found?”… I replied “um no, not really, he didn’t tell me that you FOUND anything, but what he did tell me was…… “So the doctor took off your big toe, reamed holes in your foot and then your toe, they put in a stud and then screwed your big toe back on”.”  The doctor looked at the medical student and then back at me.  He said, well “Yeah, that’s basically what we did”.

After seeing the horrified look on my face, he said, “No seriously though, let me tell you what we found.”  “When I made the incision, two toe mice immediately popped out.”

ANOTHER Horrified look

“Toe Mites?”, I asked.

“No Toe Mice” he responded. and then continued,  “It’s a medical term that we use to describe what we found.”

I really wish I had a picture of my face, because I can’t find the words to describe all of the things I was feeling at this point.

“Cmon doc, PLEASE tell me the truth, I am gullible as hell and completely disgusted that I have mice?!?!?!? My next step is to cry and I promise you don’t want that”.

He put his hand on my shoulder and said, “let me explain.”  “First of all young lady, I can not believe that you were able to walk at all with the amount of damage in your foot.  You had absolutely zero cartilage in your first metatarsal joint.”  He pounded his fists together to demonstrate the bones hitting each other as I walked.  He went on to explain that because I continued walking the bones starting splitting and breaking off into fragments (or mice).  This had been happening for so long that the bones had turned into smooth marbles and kept chipping away more bone.  The combination of those conditions, my unsteady gait, and whatever I was doing to compensate in my walking caused another break.

WOW that’s a lot of information.  Crazy as hell too, but a lot to absorb.

20180913_154439

As I tried to process what he was saying, he re-wrapped my foot in gauze and an ace wrap before sticking it back in the boot.  While he says the incision is healing nicely, I am stuck with the stitches for another week still, but I am released to begin ADL in moderation.

ADL- Activities of Daily Living

Should be simple enough right? But for me it wasn’t….please take a minute to watch this video to understand why, especially if you don’t know me very well.

So this is what Jeri and I were doing BEFORE we saw the doctor.  I get that I can’t use my right foot, so I thought we could just throw the ball and knock the beehive down.  I didn’t realize that to get any “air” with the ball I would have to push off with……you guessed it, My foot….holy mother of……………………………

I was ready to give up, but Jeri was having fun, so I played video  ographer…..

Anyway, I’m not sure that this is considered an activity of daily living, but since I do dumb shit like this all the time, I asked for further clarification.  More specifically….

I am allowed to….

1. stand/or walk for no more than 5 minutes at a time.  to be followed by a minimum of 1/2 hour break  AND ONLY WITH THE BOOT ON

2. Take the boot off except for when walking or sleeping

3. I can resume sexual activities, so long as my toes don’t curl during orgasm (yes this was discussed)

I am not allowed to

  • Curl my toes
  • get the stitches wet
  • put any weight on my foot without the boot
  • specifically throw a ball at a bee hive
  • mow my lawn
  • go grocery shopping without a scooter
  • drive 😦

I will call that progress……though not as much as I hoped

 

 

 

Post op update

So many of you know that I had surgery on Tuesday, but I don’t know if I have ever explained the history to why I needed the surgery, or what the surgery was for.

Two years ago, I broke the first metatarsal in my right foot.  I was in a walking boot for a total of 6 months off and on.  During the treatment, I had cortisone shots, physical therapy, and was diagnosed with Osteopenia.  I had custom orthotics made for my shoes etc.  For the last two years, the pain has always been there, but it has been bearable.  When I would over do it, the doc would advise me to wear the boot for a couple of weeks or use my wheelchair , do R.I.C.E. therapy, and take some drugs.

About a month? ago when I started walking on a daily basis, my pain got worse and worse.  My foot began to be black and blue on a daily basis.  I went to see the doctor and was advised that I had gout, I DIDN’T.  I try to give everyone the benefit of the doubt.  In the doctor’s defense, I WALKED into the office, granted I was limping from the pain, but I did walk.  Maybe he thought, if I was in that much pain, I wouldn’t have been able to walk?  Whatever the case, he sent me home with an order for RICE therapy again (REST, ICE, COMPRESSION, ELEVATION)  and another RX to try.

The pain got so bad I ended up at immediate care where they finally did xrays and determined that not only had I broken my foot again, but I also had severe arthritis.   I had surgery on Tuesday.  The short story is that they cleaned up the arthritis, and have inserted a plate and screws to fuse the bones together.  I was sent home bandaged and in a CAM boot to my knee.

Here’s the part where I get really angry

Before surgery I was told that after surgery I would be placed in a non removable, non weight bearing cast until I followed up with the doctor to have the stitches removed.  I planned for that.  What I DIDN’T plan on was all the conflicting information.

I came home in a CAM (walking boot) with verbal instructions to stay in bed with my foot elevated above my heart for 3 days, applying ice 15 mins on 15 off for the same amount of time.  After 3 days, I could spend some time out of bed, but was still supposed to stay off of it and keep it elevated as much as possible.  The boot was not to come off until my first post op appointment next week.

The surgery center called the following day to see how I was doing and how often I was bearing light weight on my foot.  Had I taken the boot off to do ankle circles etc?

smh 2

HUH?!?!?!

I was told NOT to take it off?!??!?!?

My parents, who had stayed the night with me after surgery reiterated that the doctor said the boot does not come off under any circumstances and absolutely NO weight on it.

I found the written instructions from the surgery center which give me a third set of instructions and all of them are conflicting.

I’ve called the surgeons office and can only get a nurse on the phone.  Her instructions are to bear weight on my foot as tolerated.  ( walk to the bathroom with the CAM boot on, but don’t get the mail, cook dinner etc.)

Here’s another problem…. I can’t bear ANY weight on my foot.   The pain is excruciating!  How do you define as tolerated?  Is MS making me feel pain that isn’t there?

After I got home from surgery, my father told me that the doctor said he could not believe that I was able to walk at all with such a bad break, or that I had been able to tolerate the pain for as long as I had.  I don’t think I have a high pain tolerance, I think it has to do with just doing what you need to do, something I have had years of practice doing because of living with MS.  I know that MS screws with the way my brain interprets pain.

I don’t want to do more damage, or screw up the surgery.  I don’t know who to listen to.  I don’t trust my own ability to make decisions because of the pain pills, and I’m very emotional……not to mention bored out of my mind.

I don’t expect anyone to give me answers or fix this for me, I just needed to get it off my chest, and did want to let everyone know that I did survive surgery and really appreciate all the thoughts, prayers, and well wishes.

I am going to go with the thought that even the doctors don’t know, after all they are just practicing.  ARGH…..