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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IVIG Treatments, Life With Autoimmune Disease

IVIG Treatments, Life With Autoimmune Disease

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I have spent the last couple of days getting my monthly IVIG treatments.  They are working!!!  I am feeling much better and have been able to return to many projects at work and my lesson planning for Tiny Hoppers.  I am still not back to normal but I am able to do so much more and it feels great to be getting back my muscle strength.  The IVIG treatments have also allowed for me to drop my steroid dose rapidly and I am down to 20mg from 100 mg.  The side effects from the steroids are beginning to disappear and it feels weird to not be ravenously hungry all of the time.  The Imuran still leaves me nauseous and dizzy for a few hours each day, right after I take them, so I am going to request that my doctor switch me to something else because I am getting pretty tired of planning my days around a couple of hours of vomiting.  Yet I am ecstatic that the infusions are working so well and they are well worth the two days that I have to sit hooked up to an IV and the accompanying migraine that stays with me for a few days afterwards.

 

I really don’t mind coming in for the IV treatments.  It gives me time to sit and relax with no one bothering me and no expectations for me to do anything.  I also like to see everyone at the clinic each visit and some of the same characters are there every time I am there.  They must have the same treatment schedule as me.  Yesterday the dog lady from last month was there as well as the guy who likes to talk the entire time and crack unfunny jokes one after the other. http://http://www.beautifullybrokenblogger.com/i-was-an-ahole/ It is like we are all his captive audience for his comedy routine.  I can just see him at home working on his routine before coming in each month.  Today the lady who likes to wear children’s hair clips all over her head was here as well as the nonna and the entire Italian clan that accompanies her.  I have never seen the guy with the toe infection again and I asked Danny yesterday if he thought maybe he had succumbed to his foot infection as it was really pretty gross and looked really, really bad to me.  http://www.beautifullybrokenblogger.com/im-just-frigging-sick-autoimmune-disease-immunosuppressants-and-viruses-dont-mix/

 

Today I opened my eyes from my nap to meet two new characters; these guys!

They were sitting in two chairs right at the end of my own chair staring right at me when I opened my eyes.  I almost hit the roof when I first saw them, then I scrambled for my phone so I could get a picture of them watching me, but one of them looked away just as I hit the button.  These two guys were just waiting for someone and were watching everyone sleeping.  I sat and watched them for a half an hour as they giggled at people snoring and heckled everyone in the room like they were the two old men from the Muppet Show.   I wonder if I snored?  Could that be why they were watching me so intently?  More likely that I spoke in my sleep as I am prone to saying the most random things.   Danny claims that I say absolutely ridiculous things and my children have inherited this trait.  My daughter will sit right up in bed and shout out random words.  The other day she sat up, looked right at me, yelled “CACTUS!” and then fell right back onto the bed and straight to sleep again.  So perhaps I shouted at them or perhaps I just looked so comfortable that they could not look away; either way it was pretty surprising to wake up to those two guys staring at you.  We also met a new lady today who I will call “Loud Screaming Lady,” as that is what she did.  Every time the nurse tried to put in her IV she screamed and panted like she was going into labour.  The poor nurse just kept going while the rest of us jumped and stared every time she howled.  She also groaned every time she moved the arm that the IV was in.  The lady beside her seemed to be getting really annoyed at her and her complaining and at one point she whispered “if it hurts to move your arm, don’t move it!”  That was some pretty good advice if you ask me.

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Yesterday one of my very best buddies showed up to surprise me with lunch at the hospital.  She brought me a happy meal and I was so happy to see her.  Everyone else in the clinic had to smell our yummy McDonalds and watch us eat it while they munched on their bland cheese and crackers and Gingerale and they all vocalized their disappointment that Diane had not brought enough for everyone.

Maybe next time I will order pizza and surprise the whole room with a pizza delivery!   Not that I don’t like the food at the hospital they have great muffins and I even like the cheese and crackers.  Today I wanted a muffin and cheese and crackers for lunch.  I asked for the muffin first.  Then everyone saw me enjoying my muffin and they started asking for muffins too but not all at one time.  The poor nurse would go to retrieve a muffin from the snack room only to have another person ask for a muffin.  This went on at least eight or nine times.  At that point I felt bad asking for her to get some crackers and cheese and was afraid I may start a crackers and cheese snowball effect just like the muffin avalanche so I decided to just have the muffin.  Foregoing the cheese and crackers was my act of kindness for the day as it really was partly the nurse’s fault that she went back and forth so many times.  After the third visit, I would have yelled “who else wants muffins while I am going back there!”  Then I would have brought everyone two muffins and got it over with.

 

It was so sweet of Diane to visit me and we spent the afternoon chatting and she helped me to waste time.  Good thing because my treatment lasted just over nine hours yesterday.  My veins are not responding well to these treatments and within hours they become swollen, inflamed and extremely painful.  This means that they have to slow down the rate of the infusion so that it goes more slowly into my veins.  There really is no choice as it feels like my arm is being hacked off with a knife if they go too quickly and the pain lasts a few weeks after the treatment is done.  The last time I had a bruise that started at my wrist and went to the tip of my fingers and there was a giant lump in my forearm that lasted for two weeks.  They are also having trouble actually getting the IV’s in and this treatment it took them eight tries to get it in the right spot.  They are running out of places to put it so I ended up with it in on the side of my arm this time in the most awkward spot.  Diane is awesome though.  She is not squeamish at all and continued eating her fries while the nurses adjusted my IV and took my vitals like it didn’t bother her at all.  My other friends would probably pass out and I would end up having to take care of them instead of vice versa.  She even got to meet the guy who likes to tell the jokes and asked me “what’s up with that guy?”  LOL  Sorry Di, these are my peeps now and if you visit me you will get to know all of these characters that I enjoy each time I have to spend the day getting treatments.  They keep me sane and keep me laughing and I am grateful for each and every one of them.  Well maybe not “Loud Screaming Lady,” she kind of sucks!

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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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