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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Choking Is Not a Good Sign with Dermatomyostis / Bathrooms do not Make Good Conference Rooms

Choking Is Not a Good Sign with Dermatomyostis / Bathrooms do not Make Good Conference Rooms

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So choking while eating and drinking is apparently not a really good sign with Dermatomyositis.  The good news is that I don’t need to have any GI testing done as they already know what is wrong with me.  The doctor just watched me sip a bottle of water so that was a pretty pain free diagnosis.  That is about where the good news came to an end!  I will fill you in on this crazy day right from the beginning.

I headed off to my doctor’s appointment this morning and they were running really late.  I can’t complain much though as my doctor is rarely late.  Other doctors I see, and I see quite a few, can often run behind but she rarely does.  In addition, I myself can occasionally be late and just last week she yelled at me across the reception area to ask “where was the accident?” when I arrived.  This was her not so subtle way of letting me know that she saw me sneaking in late and my strategically standing behind a pillar as she walked by did not fool her.  Today they had new medical students starting and it was slowing everything up so they were really behind.  The nurse called me in after an hour and a half to take all of my vitals and then sent me back out to the waiting room again because it would still be awhile longer.  Huge problem as I had scheduled a conference call with my lawyer and my business partner that was supposed to start in just 15 minutes and it was the only time that the lawyer could squish us in that day. I had to take that call.  So I explained my predicament to the head nurse and she said she would cover for me and slot people in while I was gone. I couldn’t find a place where I could get reception and or that was quiet enough that I could hear the call so I slipped into the public washroom and sat in a stall.  Luckily I had three bars on my phone and could get through.  Probably not the wisest place to make the call as during the conversation I had to keep muting as people flushed toilets.  I didn’t want my lawyer to think I was sitting on the toilet while conferencing him so there I was listening to my neighbours going to the washroom and guestimating when they were almost done their business so I could hit the mute button before they flushed.  Then it happened, someone parked themselves beside me and did a giant smelly one and I was stuck there enjoying the fumes for the remainder of my phone call.  In addition, this person was so noisy that I had to keep the phone on mute or my lawyer would have thought I had a bad case of gas.  What were the odds of that happening?  Pretty good since this bathroom was located in a hospital where many people are ill and my 15 minute conference call ended up lasting an hour so I sat in that bathroom stall for over an hour and someone was bound to have to do a number two at some point.

After the call I headed back up to my appointment to meet my doctor who immediately wanted to know exactly where I was for an hour.  I explained the whole story to her and she had a good laugh and then brought up the question “and what were you doing on a phone call when I told you to take off work seven weeks ago?”  Busted!  I changed the subject really quickly by telling her about the choking.  This did not help matters as, like I said, this is apparently not a good sign of recovery from dermatomyositis.  After some questioning and testing it was decided that I will have to start a new drug regimen in order to get this disease under better control much faster or I would end up on a feeding tube in the next short while.  So she decided to add a new drug to my already huge load of medications and, guess what, the symptoms for this one are nausea and all of the others wonderful side effects that the other drugs I am taking have.  No worries, I am already dealing with that anyway so that didn’t really faze me.   I also have to start on something called IVIG infusions.  Now these drugs are going to be a real pain because I have to go to the hospital a few times a week to get them for the first few months.  Later on I will only have to get them once a month, once my immune system has calmed down, but they need to hit this hard for the first few weeks.  She said that she will set up the treatment schedule but to be prepared to spend a few days a week at the hospital with an IV in my arm for the better part of the day.  She also said that the infusions will most likely make me pretty sick as the side effects can be quite nasty and I am prone to side effects.  We are keeping our fingers crossed that I won’t feel too badly following the treatments but she said I need to organize my schedule accordingly and then she slyly swung the conversation back to my conference call in the bathroom and the fact that I was not supposed to be working.  It didn’t help that my cell phone had also rang about seven times while we had this conversation.  Not all of the calls were work though as my daughter’s school was calling to say she was sick and needed me to pick her up right now.  So my doctor was also interrupted by my calls to the school and my parents to arrange a grandma pick up.  Thank god for Grandmas.  Between the conference call fiasco, the school interruption, and the multiple times my phone rang my doctor and the resident were at their wits end and had had about enough with me.  My doctor announced in no uncertain terms that I would now be taking a two month hiatus and that my new job for the next two months would be to get better and do my treatments.  She then asked if I would need a note for my business partners or would I prefer she call them to let them know herself.  I guess she did not trust me to pass on the information.  So the good news is that I will have extra time to blog and write while I am getting my treatments.  Another pleasant surprise of the day was that for the first time ever I did not have to wait for an hour at the hospital lab to get my blood work.  When I went down I was the only one there.  It was eerie and the nurses said they can’t remember when that has happened before.  Literally I was the only one there and they whipped me in and out in five minutes!  Score!  I like to think that after the day I had and the bad news of the new treatments that someone up there decided to throw me a bone and cleared out the lab for me.

When I got home I texted my brother, to fill him in on the medication changes and updates with the choking as this is actually his area of medicine and he let me know some tricks to use to make sure I have enough air in case I do choke briefly.  He also told me about a liquid thickening product that I can pick up at the pharmacy to make my liquids thicker and easier for me to drink.  I think I will hold off on the liquid thickening stuff until I absolutely need it for that just sounds really gross and I am betting that I won’t be able to add that to my diet pop.  Then he texted me that I need to make sure I take a deep breath before I swallow food so I have enough air to cough if the food gets stuck and project it across the room.  LOL He even dared me to see how far I could get it to fly.  I love my family, they always know what to say to make you feel better and a good food projection challenge was just what I needed.   He then told me that they were looking at a new puppy and sent me this picture.  Ba ha ha!  I was like “that is so cute, the puppy not the naked guy in the background!!!  WTF, could he not have put clothes on before taking the picture?”  He left me hanging for a while and then wrote back that the picture was a funny ad he saw but they really were looking at a puppy.  I really hope they do get the puppy soon and I look forward to pictures of my sweet niece and nephew cuddling a cute puppy instead of a naked man.

So not a great day, but still a few fun adventures along the way.  I will keep everyone updated on how these treatments go as I have no idea what to expect on this uncertain path I am on.  My beautifully broken life is never boring anyway!

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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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