About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

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I Am Starting To Look Like BANE!

I Am Starting To Look Like BANE!

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Haven’t updated in a while because that crazy cold virus ruined me and sent me into a horrible flare up.  So I have been enjoying being babied by my family and friends.  My friend Stacey saw my last post and surprised me by dropping off books, magazines, Gingerale and treats which I have been thoroughly enjoying.  My hockey friends met me with hugs after they read my blog and quickly jumped in to help me up and down the arena steps.  How can you feel down when you have so many people cheering you on and spoiling you whenever you have a set back?  I was just counting the days until I could get my IVIG infusions again and hopefully feel better.  I was at the hospital for the past two days getting the infusions and I am already feeling much better.  If only the treatments didn’t make my head and veins hurt it would be amazing but the couple of days of pain mean that I get to feel really great for the next three weeks so it is well worth it.  I normally blog while I am at the hospital but I felt terrible this time, probably because of the flare up and virus, so I spent the most part of the past two days sound asleep in my hospital chair.  There were a few new patients who came in for treatments that kept things interesting.  I get to meet a lot of new people at the hospital as most people only come in for an hour or two for their treatments and I am always the only patient stuck sitting there all day long.   My treatments normally take about 8-9 hours each day, for two days in a row, so I get to see a whole stream of patients flow in and out throughout the day.

 

There was one adorable, elderly gentleman who came in this time.   He looked a whole lot like Mickey Rooney and sounded exactly like him.  He was really loud and hilarious.   He kept asking the nurses to bring him a beer and when one of the nurses woke him up to take his blood pressure he yelled “AGHHHHHHHH!!!!!  Holy Crap, YOU JUST SCARED THE SHIT OUT OF ME!!!!” which was followed immediately by “Bring me a beer!”  I loved him and I asked the nurses if I could move to sit next to him for the day as he was on the other side of the room and I was stuck sitting beside an elderly couple who literally argued non-stop for the entire two hours that they were there.  “Hang my coat on the back of your chair,”  “No, you should have hung it on the hook!”  “If I hung it on the hook someone could have robbed me so hang it on your chair,” (pretty insulting since at that moment it was only myself or Mickey Rooney who could have robbed him and he glanced in my direction while saying it) “I’ll just hold it.”  “Don’t hold it, put it on the back of your chair,”  “No, I’m holding it,”  “Look, now you are sweating, I told you to hang it on the chair” “No, I would rather hold it,”  “Well you are sweating and going to have a stroke now so give it to me and I will hold it myself”  “No, I’m holding it,”  “Just give it to me if you are not going to hang it on the chair, you should just hang it on the chair.”  This went on and on as I dozed in my chair and about an hour into the argument I almost lost it and yelled “For the love of GOD!!!  JUST HANG IT ON THE CHAIR!!!!!!!!” and I had visions in my Benadryl induced stupor of actually tearing the jacket into a million little pieces right in front of them right after I stole the old guy’s wallet.  So I asked if I could move my seat next to Mickey Rooney as I also wanted a beer by this point but apparently there are “rules” against this.  I absolutely noticed that the nurses were not seated in their own chairs behind the desk, right next to the arguing couple, but they were all hanging out next to Mickey Rooney leaving me alone, trapped to a chair by my IV, with the bickering twosome.  When the couple left I breathed a sigh of relief but my solitude was short lasted as the “Cat Lady” was sat in their seat shortly afterwards.

 

The Cat Lady really, really wanted to tell everyone the tales of her cats.  She even had a large pink tote bag on her walker that was covered with pictures of cats.  I have often seen the lady who likes to tell me about her new puppies at my treatments but the Cat Lady was new for me.  I must have one of those faces that say “please talk to me” as for some reason these talkative people always zoom in on me even when I am half unconscious.  Why do I make eye contact with these people???  So this lady went on and on telling me stories about her cats, just talking at my half asleep face.  I would just nod my head occasionally.  I even looked pleadingly over at the nurses hanging around Mickey Rooney just trying to get them to read my suffering and move my chair but they were the smart ones and were trying not to make eye contact with anyone at our end of the room.  At one point I mercifully fell right to sleep only to have her wake me up out of a dead sleep when she reached out to poke me and yell “DID YOU HEAR THAT ONE!!!!  ARE YOU SLEEPING?”  Scared the pants off of me and I shot up in my chair now afraid not to pay attention to her cat stories.  What I should have done was take a page from Mickey Rooney and yell in her face “AGHHHHHH!!!!!  HOLY CRAP YOU SCARED THE SHIT OUT OF ME!” but I was too stunned to think about it until it was too late.

 

Normally I would really enjoy the annoying conversations of my neighbours and would even egg them on a little to see what would happen but I was in no mood for this level of crazy on this day because my head was pounding and my arm was absolutely killing me.  My veins have decided that they do not like the IVIG treatments and they become inflamed as soon as the IV starts.  As the IV pumps into my arm the veins bulge and it feels like someone is stabbing an ice pick in my hand, wrist and forearm.  The nurses bring me warm blankets every half an hour to wrap my arm in and it does help some as it expands the vein, allowing the IVIG fluid to run more smoothly.  By that evening though my arm is swollen, red and sore as hell and even the veins in my legs and torso hurt as the meds run through my system.  The veins throughout my body also bulge for 4 or 5 days making me look like I am some sort of super villain from a comic book.  The kids say I look like Bane from the Batman movies.  They aren’t wrong.  I have dark veins running all over my body and when I get out of a warm bath I am covered head to toe in dark blue and purple veins along with massive bruises because inflamed veins do not respond well to IV’s and it took the nurses nine tries to get my IV in on day two of my treatments.  I even had veins running across my face last month.  It really does look freaky; thank goodness it doesn’t last and apparently it isn’t anything to worry about but man is it sore and leaves me way less tolerant of arguing seniors and endless cat stories.  It also makes me less tolerant of nurses who leave me sitting next to these annoying people as they hide over with Mickey Rooney so I figured if I had to stay awake and listen to the Cat Lady’s stories then they were going to feel my suffering.   I started asking for various items to keep my nurse over at my end of the room so she could enjoy the cat stories too.  I needed a pillow, another warm blanket for my arm, a muffin, another muffin, cheese, crackers for my cheese, Gingerale to wash down the crackers I choked on and when I got too full to eat anymore I would bend my arm in the exact way that I knew would make my IV beep so they would have to come over and reset it.  Ba ha ha!!!!!  They could not figure out why my alarm kept going off but it magically stopped as soon as the Cat Lady went home for the day.

 

I have started the process for trying to get approval for the Rituxan treatments that I need to start soon.  My doctors have registered me in a program called Joint Effort that approaches your insurance agents on your behalf and fills in all necessary paperwork to try and get the drug covered.  They also confirmed that this drug is not covered under any other assistance programs like Trillium so really drug coverage by my insurance company is my only hope for having this paid for so I will keep my fingers crossed.  For anyone who did not read about the Rituxan treatments I need, you can read about it here http://www.beautifullybrokenblogger.com/please-pray-to-the-insurance-gods-for-my-tonight/   but the short version of the story is that these drugs are super expensive and not covered by OHIP so I am really hoping my insurance will cover them as my doctor thinks I will need these treatments for the rest of my life and I am planning on living until I am really, really old; so that is a whole lot of treatments.  While Joint Relief works on getting me coverage I have a bunch of doctor’s appointments booked next week to get me ready for the treatments.  They are checking my immunizations and have to update me on anything that I am not immune to do to the high risk of infection I face while I am on this drug.  I also need to have a TB test, blood work to check for a kazillion diseases, and chest x-rays to make sure that I have zero signs of infection before starting these meds.  Kind of makes me a little nervous all of the precautions they have to take before they even start the treatments but I guess they are just being careful.  So once that is all done and I have approval I will get to start on that new journey.  I hear it is very similar to the IVIG treatments though so I am actually looking forward to them as my doctor says that this is the one drug that is super strong and really, really works after a few months.  I am super hopeful that it will work for me and my blog will be less about treatments and more about wild and crazy adventures.  My daughter wants me to take her horseback riding at the cottage this summer and it is my goal to do that with her even though that is another one of those sports that I really suck at.   So keep your fingers crossed for me and hopefully I will have good news to share soon.   In the mean time, check out some of my bulging Bane like veins!  Sigh!!!!

My Wrist
Back of my hand
My Foot
Bicep BANE!!!!!

2 Comments

  1. Debbie

    6th Apr 2017 - 8:14 am

    Thanks for the photos. They add so much to your post! One of your best hospital day posts ever! LOL. Hugs.

    • Theresa Bertuzzi

      11th Apr 2017 - 3:34 pm

      Thank you! XOX

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About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

Stay Connected

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