Nothing OR Nerves

I have had MS for 16 years now. When I was first diagnosed, my original neurologist told me that she wanted to “wait and see” and hold off on drugs, hopefully my MS would be dormant in my system.   I had my son and he was two  or three when it  started to become clear that my MS would NOT  remain dormant. Around that time, I was fitted for Canadian crutches to help with my stability in walking.   I know I have written numerous times about teaching him to walk and then hitting my thigh and telling him to “Hold mama’s crutch.”

It was at this time when I started Interferon shots.   I gave myself daily shots in my thighs and would have to get my mom’s help to administer the shot on the backs of my arms (my left arm  mostly because I am left-handed).   I remained on these shots for about three years. Often times, I was NOT very  diligent in making sure I took it daily. My body did not tolerate them.

Ultimately, the side effects were too much for me to handle. I was in my young 20s then and could not handle losing the hair on my head (the hair I kept was very greasy), growing facial hair (a lot of it),  and falling asleep if I sat for too long. It wasn’t a nice “Sleeping Beauty” sleep but more like but more like Homer Simpson with the drool coming out of my mouth.  When I couldn’t take it anymore, I started researching natropathic medicine.

It was the summer after my dad died that I started my organic lifestyle,  purged my apartment of non-organic food and cleaners, went to Florida for electronic acupuncture, and then saw my first natropath here in Michigan.  He put me on a bunch of supplements instead of taking the shots. I stayed with him for a few years before I moved on to my current natropath.   Dr. Clark is also a chiropractor and he helps me with my chiropractic needs as well

The insurance  I have through my work does not cover any naturopathic expenses so this proves to be very expensive in addition to my organic diet. Because of this cost, I am not able to eat as much organic food as I would like.  The choice I made to stop Western medicine was my own and many people do not agree with this. MS is such an individual disease, I choose to do what is best for my body and I  couldn’t handle how the MS drugs made me feel nor the side effects.  I’ve taken a lot of flak from people telling me how my supplements do, “nothing.”

I take a whole LOT of supplements and they are expensive! Times when I can’t afford all of them, there are a few that I really need! When I can’t afford those few, there is one that is imperative that I have! I never run out of that one! I make sure of it!   It was concerning last week when the hospital called me and told me that I had to stop all of my supplements one week before my surgery.  I was nervous but knew I would “grab my guts” and do it, it would only be ONE week!  I posted a couple  days ago that there were five days left and it was difficult but I was going to do it!

Well, I’ve been off my supplements for six days and I want to tell everyone who says naturopathic medicines/ supplements  do “nothing” – THEY DO NOT DO, “NOTHING!!!”   I’m sure that I will be a box of nerves tomorrow in anticipation for my surgery but I wanted to let it be known that I stand by my supplements 100%!

I started a new puzzle yesterday, it’s the Creation of Adam depiction of the fingers almost touching. Puzzlin’ (as I call it)  helps my brain keep working and it gets my mind off of the pain of having MS  for as long as I am doing it. I have been known to puzzle all day on the weekend. So, I open up the box and start dividing the pieces up  between end pieces and middle pieces.  And I see this:

If you can’t see from the picture, instead of being normal, uniform puzzle pieces, they are all crazy shaped!  This was as far as I got in my dividing. Given that my body hurts so badly, I just stared, at a loss, at these crazy shaped pieces. Sean saw me and gave me a sort of pep-talk encouraging me that I “had this!”  I pushed away from my puzzle table and shook my head. My body hurts too badly to concentrate! I’ll start the puzzle after my surgery, or when the  healing process is well underway.

Just in case my nerves are going nuts tomorrow, the day before my surgery, I just wanted to tell everyone that naturopathic medicine is NOT, “Nothing!”  My body is currently screaming a lot louder than it normally does!   Thinking about it, the only way my body it’s going to feel better is to get back on my supplements. I will only start my supplements again after my surgery so I’m going to be in pain anyway! Not MS pain  but surgically repaired knee pain, I’m not sure that’s going to be any better…

7 Months, 5 Days OR Forgotten OR 5 Days

It has been seven months and five days since my knee was hurt. It’s not like I have forgotten what a normal knee feels like, my left knee feels normal. In the past seven months and five days, I have forgotten  what it feels like to NOT  have a broken knee. My right knee  is broken. I felt that something was wrong with my knee three days after the incident; that  feeling was strengthened because it was not feeling better and healing  with physical therapy.  Finally, the feeling was solidified when Dr. Frush told me that my meniscus was torn and I needed surgery to fix it. I knew something was broken!

As my surgery date approaches, I am feeling nervous. I am nervous because there is no way of knowing how my body will feel having had MS for 16 years until  my body is feeling it. I know that my body takes longer to heal with MS (my broken ankle took 6 months to heal).   I also know that knee surgery  is the most pain I have been in my life to this point!  These aforementioned things are two things I am not looking forward to at all! A friend of mine told me that he didn’t think that the pain I will have  post-surgery will be as bad as the pain I have been in for the past seven months and five days. I hope he’s right!

I got a call from the hospital  where I will have my surgery last week. They  asked me a bunch of medical questions. They also told me that I have to discontinue the supplements I am on for my MS one week before surgery.I stopped my supplements on Monday and today (Wednesday) I am feeling like the Tinman in the beginning of the Wizard of Oz  before Dorothy and the Scarecrow give him the oil.   My body is so stiff that movements are slow and my knee is hurting even more! But, looking on the bright side, I only have to endure for five more days.  I can do anything for five days!  At least, that is what I am telling myself…

Dread

I thought about this recently as my knee surgery is approaching. I think my Mom told me this after my Dad had already been dead for a little while, but she told me that her and my Dad were driving somewhere on a sunny day a little while before his second heart surgery. My Dad kind of brushed the scar on his  chest,  stared out the window, and told my mom, “This  is going to hurt, Mary.”

it’s been 17 years since my knee surgery and I still can honestly say that that was the MOST pain I have ever been in in my life. I love adding that I even had a child!   (Granted, that was surgically but it still happened!) Dr. Frush assures me that it will not be as painful as my ACL reconstruction but now, sprinkle in a little MS and there is no telling how my body is going to react and how it will ultimately heal.  This part scares me. Fills me with dread even.

I never knew that my Dad was dreading his second heart surgery, or even had been afraid. My Dad was the eepitome of strength for my entire life! Now, as I have aged, I understand that the, “Man of Steel” whom I have always known may have rusted a bit.   I’ve been thinking about as strong as my dad has always been for my life, even he  experienced the dread of the impending pain of a surgery that he had already had.

That is exactly where I am at!   I’ve had many things to get my mind off of this dread in the past week. Phone calls  from the  hospital, emails my work,  and the extreme pain that my knee is in the whole time!  But, I’ve said this before like in the epic movie, The Neverending Story  so I’m  NOT looking forward to it but I am  ready.   I think.   I just know that this is going to hurt.

Join Team Jen

I just started this Booster to help me with my knee surgery and rehab.    Because I’ve had surgery on this knee previously, I am aware of how much it hurts!  Throw in a little MS and I am not sure how it will heal…

Please and Thank You!

Click here to donate.

This booster was a success! I raised $745.41.  This will help me with mounting expenses so very much! 90 is really hurting but is on the mend… FINALLY!!!

Stunned

Well, my knee still hurts very badly.  Every second of every day! The most recent development is that when I roll over in bed, it pops out!  There is no comparison to being sound asleep in your warm bed, rolling over, feeling the burn just before my knee pops out of its socket, hearing the subsequent “POP,” then feeling the excruciating pain!  My eyes fly open and I am absolutely stunned!  Paralyzed in agony.  It takes a second to get my bearings and if I roll over again, my knee might “pop” back in.  It takes 2 or 3 times of rolling over onto my stomach and then over onto my back and then I will hear the, “pop” of it going back into place.  I’m still in pain because it, “popped” out but I can begin to relax.

Until i have my surgery, I tell myself NOT to roll over!  If I don’t roll over, it will be fine. Right?  Until, the newest development is I lay on my side and just moved my right leg in the slightest and the process begins again just before the, “POP.”  At this point, I couldn’t roll back and forth but was paralyzed in pain until my Mom came by to “pop” it back into place.  With each, pop” I am concerned that I am doing MORE damage to my knee.  If I think about this too much, I’m stunned.

Now, I’ve never been punched in the face, right in the nose, but I imagine that it does NOT feel good and it also has a stunning effect.  In the past week, I’ve received some proverbial “Punches in the face.”  I hope that I don’t offend anyone by using this comparison, if I do, I apologize. This comparison works for the stunned, shocked, and paralyzed feeling I’ve experienced a few times since I stopped working and learned that I needed surgery.

The first punch came when I received an email calling in to question the possibility of NOT having a job opening for me the upcoming school year as I am out for the duration of this year.  The second punch came when I received a phone call from the insurance/billing office of  the hospital where my surgery is going to be performed.  Now, Sean has had a couple of mouth surgeries that came along with his braces.  I’ve had these types of conversations with the insurance/billing department of the oral surgeon but they were for my son. I’m SUPPOSED to do this.  The surgeries were NEEDED, so I took care of it.  Thank God I have insurance.  I have NEVER had surgery myself where I am the person in charge of the bill.

I wasn’t ready for it.  I’ve had surgery twice in my life and I was a dependent on my Dad’s insurance both times. Now, the discussion regarding payment for both of Sean’s surgeries were done face to face.  Mouth surgery is A LOT less expensive than knee surgery I’ve since learned with the phone call.  The woman was pleasant on the phone and matter-of-fact.  When I spoke with the oral surgeon insurance/billing department they first tell me how much the surgery is, how much insurance will pay, and how much I am responsible for.  The woman on the phone did the same thing BUT the dollar amounts were SO much BIGGER!  Hearing the tens of thousands of dollars being enumerated, I was grateful that we were on the phone so she could NOT see my face with my bugging out eyes.  I was stunned!

Stunned because the amount I am responsible for is more than an entire 2-week paycheck.  It was easy for me to take in the information for Sean’s mouth because he NEEDED the surgery.  But, I also NEED this surgery.  Wow!  I’m not quite sure of what’s going to happen, well the surgery IS happening, just not sure of the “how afterward.  I’ve been stunned with this information trying to sit with these figures.  But then here comes “Punch in the face” #3.

I have yet to get a specific answer of how I am to be paid while I am off work awaiting this very expensive knee surgery.  I have had automatic deposits from my employer for 12 years.  It’s clockwork.  All of the automatic withdrawals from my bank account are set up accordingly.  I get paid twice a month. I am a salaried employee, contracted for this school year.  Only, I didn’t get my scheduled deposit today.  STUNNED. With a few tears, I’m not going to lie…

NOT COOL Stuff #13

I currently am having renovations done at my home. They are long overdue but they will make my house more handicapped accessible. Now that I am in a wheelchair pretty much all of the time, I could no longer ignore the needs I have.  “Making do” with what I have no longer suffices  even though I wish it did; I wish I could force myself to get things done but… I need help now.  The man doing the work is more of a perfectionist than I am. I didn’t think that was possible! But it is. I have found him.

He has excellent vision and pays attention to detail. That being said, my house is so stinky right now! Being chemically sensitive, I can’t even take some people’s perfume or cologne let alone stain and polyurethane. So, Sean and I had to vacate.   We stayed at a nearby hotel during the power outage  where the beds were absolutely the most comfortable thing I have ever slept in and the continental breakfast was superb! The eggs were delicious!  There was no question that we would stay there again during this time of the “stinky house.”

This is where the NOT COOL stuff #13 occurs.  ADA law covers a lot of Americans  and my mom knows to ask for specifics regarding amenities needed for me. She called to make the reservations because she is a member at the hotel I wanted to reserve my room. She was very specific amenities needed. It seemed like it would be a seamless  reservation.

Enter the first seam:  The room that was reserved for me was an ADA room; however, it was not for a physically disabled person but rather a hearing impaired person. The room did not work for me and my needs. So, back to the front desk #1.   As it turns out, there were no handicapped accessible rooms available at that hotel but there was a semi-nearby hotel  in the same chain where we could stay. So, we got into the car and drove to the other hotel. We get into the room and check out all of the needed accommodations.  We find out, this room will not suffice.  Back to the front desk #2.

 Now, in this instance, it is not me being “high maintenance” NOT that I’m NOT “high maintenance” but I prefer to say I am “high standards.”  Sean will be the first to  laugh and say that I am “high maintenance” but in this situation, I cannot physically navigate through  this particular room to be comfortable.  So we get a third room. It was kind of like a game of “Hot and Cold.” We were getting “warmer”  but not quite. To save me from trip to the front desk #3.   My mom handled the transaction over the phone in the room and dropped me off at the new room before going down to the front desk.

While in the hallway waiting for her to come back, I stared at this and was excited that this room could really work out (notice the second peep hole in the door, for someone in a wheelchair):

 It wasn’t until getting ready this morning, I realized  that the bathroom is just not working out for a physically disabled person. My mom came by this morning and became my “spotter” to assist me but things just weren’t  working out, it wasn’t because of a lack of effort. We had a will, but just couldn’t find away. We get on the phone with the original hotel. Turns out, they have the room  I need available for tonight because my house is still really stinky! So now it is back to the original hotel for tonight’s stay.

 What really is NOT COOL about this whole  ordeal is that each time we came across an obstacle or barrier or whatever you want to call it, I could feel tears  beginning to sting mt eyes and with each new room, I couldn’t believe how inaccessible it was even though it says that it is. My Mom, being my Mom,  took the reins on this whole thing for a room for Sean and I because she  could see my stress level rising and my body’s response to that stress which is just to shut down.   The beds are really comfortable and Sean really likes the continental breakfast  but disabled people matter too!  And, man, MS sucks! Oh, AND my knee is still broken!

Painful

There are a few things I remember about my first knee surgery, my ACL reconstruction that I had in January of 2000.   I never thought that I would have to have a 2nd knee surgery but here I am.  The first thing I remember about it is that I completely had a crush on my orthopedic surgeon! Dr. Frush asked me  if I remembered who did my surgery when  I unsnapped my tearways to show him my knee.

Did I remember?! Of course I did! I had the biggest crush on him! My 17-year-old self was in love with him! So,  when he asked, I’m sure I blushed and smiled as I told him, “Kyle Anderson.”  It turns out that Dr. Frush knows him.   I could feel my blush deepen and my smile broaden.  I explained that when I was 17, I completely had a crush on him! Dr. Frush laughed and told me that he thought that he is the doctor for the Detroit Lions now.

I wrote a blog post a while ago explaining that and Christen (my first physical therapist from years ago) confirmed that. After I found that out, I started paying attention to injured players when I was watching the Lions’ games  and sure enough! Dr. Anderson was on the field!   He’s older but I still could have a crush on him! He ages like Sean Connery

I  tweeted this photo  a while ago  and posed the question that if my orthopedic surgeon was touching Matthew Stafford because he did my surgery does that mean in a way, I was touching Matthew Stafford?   I thought so!  At least that is what I tell my self.

The second thing I remember about my first knee surgery is that was the most pain I have ever experienced in my entire life! That includes childbirth but  having had a C-section I think I cheated. When asked the question  at work how I was feeling, my answer was quick and with a straight face that it was, ” the most pain I have ever in in my life.”

My nephew asked me if I was scared and I paused a moment, told him that knee surgery is the most painful thing in the world and  after some hesitation simply said, “Yes.”   Dr. Frush told me that this meniscus trim or meniscus repair will not be as painful as ACL reconstruction but somehow that doesn’t make me feel any better.

The third thing I remember from my ACL reconstruction is my follow-up appointment.  I got to see Dr. Anderson  one last time after the surgery was complete and I was getting my stitches out. He told me that I was lucky that my meniscus was still  intact because otherwise, that would be really painful! That statement really didn’t seem important to me because the surgery hurt enough as it was!

Now I sit here with a torn meniscus and COMPLETELY concur with him! This is really painful! It has been painful for over six months now. This really hurts  I am not looking forward to surgery because throw a little MS in and I’m not sure what my rehab is going to look like. I know one thing though; it is going to be  long and painful!

Heartbreaking!

So, my orthopedist scheduled me for surgery and I am off of work so, because I have so much time on my hands, I finally  joined Facebook.  And now that most of my Barwis peeps are assembled, (they have “friended” me) I feel pretty good!

I will not put the couple of people who have  NOT joined my party yet on Front Street and tell you who  they are I but regardless, I STILL feel pretty good! The last time I was at Barwis Methods was October 20, 2016. The very next day I got injured and when I saw Dr. Frush he told me not to go back to Barwis until my knee stops hurting.

It still hurts. It’s been over six months since I’ve been there and now I am scheduled for surgery next month and it could be another four months after that when I could go back.  It’s heartbreaking!

Barwis Methods has been a HUGE part of my life.  It’s SO big to me because it has been the ONLY place that I feel comfortable in my wheelchair because here, everyone knows that it is temporary.   No one knows the exact date when I will be walking but they ALL believe in me doing so, they have always believed it. Even days when I have a hard time seeing it, they don’t falter.

My memories of Barwis go back to the first day that Mike carried me over to the  leg Kaiser machine:

Or Jesse’s really good stretches, and the first time it felt like I had two legs instead of one:

Or the day I “fan girl”ed out with THE  Brock Mealer and Adam (Phil) took this picture:

Or Phil wanting to press the bruise on my arm like my brothers used to, not ordering onions on his sandwiches from Jimmy John’s when I was there because I HATE the smell of onions,  or my favorite Barwis pic:

Barwis is having  music conversations with Michael Roades,  Megan Sundstrom telling me about Wacky Sock Wednesdays, doing the ropes with Mike Morfitt,  standing with Sue, Nick Montoni telling Deeds to play some U2 (just for me),  conversations with Elle when I call in, or Dan Mozes sticking his fingers in my ears.

Everyone who works with me at Barwis knows that I am fighting a losing battle with MS but they still work their hardest with me to stave off the inevitable as long as  they can.  I don’t think that anyone there knows how important they are to me but they are the MOST important!

I get afraid of how much I am backpedaling each day that goes by that I’m not at Barwis. I can feel my core muscles atrophying and sitting upright is harder and harder for me.  I’m  encouraged that my bathroom floor is still cold and it feels like I have two legs still. I know that however far back I have back pedalled, when my knee is no longer broken, whoever I am training with will get me back to where I was and further. Being without them for so long is  absolutely heartbreaking though!

April 2017 Faves

” I Believe in You”. Michael Buble

“Stay”  Zedd ft. Alesia Cara

Something Like This”   Chainsmokers & Coldplay

“I Feel it Coming” The Weekend ft. Daft Punk

Tear in My Heart” Twenty One Pilots

Believer”  Imagine Dragons

“Scared to be lonely”  Martin Garrix & Dua Lipa

HAD to have some Gavin…

“Making Love With The Radio  On”  Gavin DeGraw

“Speechless”  Rachel Platten