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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A Little More Broken than Beautiful Today…

A Little More Broken than Beautiful Today…

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Well the past two days have sucked a little.  First I managed to put on five pounds of water weight in one day that went directly on my face and a large lump between my shoulders.  Lovely!  Today when I bent down to put on my socks I couldn’t see because my chubby cheeks were covering up my eyes.  My face will normally inflate and deflate throughout the day but it has been pretty much puffy now for 48 hours and I suspect it may not be deflating any time soon.  I really want to comfort myself with food but I know that they will only make matters worse.  So I am chugging water instead in hopes of getting rid of some of the swelling.

I also headed back to see my neurologist yesterday followed by my rheumatologist.  I was hoping to get the all clear for cancer so I could put all of the testing behind me for a year but apparently there was a different plan in place for me.  Before my family panics, I do not have cancer and may never have it.  Unfortunately they did give me a little bit of scary news.  They had sent my blood work off to Calgary to have some special autoimmune testing done on it and they got the results back.  They were surprised to find that my test results came back positive for a rare antibody called Anti-NXP positive which is not a great finding.  They let me know that I once again managed to amaze them by having something so rare that only 1% of patients with Dermatomyostitis test positive for this.  Well lucky me!  I really wasn’t that concerned until they let me know what it meant.  Apparently this antibody has a strong link with malignancy and my odds of already having cancer somewhere or getting cancer within the next five years just jumped significantly.  This one is a huge red flag for them and they are very concerned.  Now all of my tests so far have ruled out cancer so I very well may never get cancer but there is a major risk now that I will develop it soon so I am now back on cancer watch and right back to square one for cancer testing.  I now have to start from scratch, back under the microscope and all of the testing, MRI’s etc… that I have done will all need to be redone in January looking for cancer again.  They will also have to be redone every 6 months for the next few years.  I was also told that I need to check myself carefully each time I bath or shower looking for changes in my skin or lumps of any sort and to immediately report any changes to my doctors.  If I feel, see or suspect anything weird I need to report it. They said that all lumps come out now and they need to be very aggressive in monitoring and searching for anything suspicious.  I feel like my body has suddenly become a land mine and I will be spending the next five years waiting for the ticking time bomb to explode.  Where might it turn up?  Will they catch it in time if it ever does turn up?  Will I go completely insane worrying about it turning up?  How do you go on with your day knowing that your body is screaming at you that it may have cancer but no one can find it?  This is really going to suck.  I guess I will let you all know the answer to these questions because I am going to have to do this whether I like it or not.

I really felt bad for my doctor today because she was so genuinely worried about me and how I was going to deal with this.  She gave me a hug and told me how well I was handling everything and pointed out that she would lose her own mind with the uncertainty of all of this.  I just let her know that I felt good knowing that she was going to be careful and watch over me so that if I do get cancer they will catch it early and can fix it.  She said she was going to make sure that I lived a long time but did remind me that I still may never get cancer.  My brother, Rick, the doctor, firmly believes that I will not get cancer.  He really believes that this is just another autoimmune disease and I am testing weird because I always get everything weird.  LOL  I want to hang onto his firm belief but I have to wonder if some of his optimism stems from him wanting so badly for me not to have to go through that because I know he loves me with his whole heart.  Although what he says also does make a whole lot of sense and he is almost always correct when it comes to medicine only!  LOL  My rheumatologist has another somewhat positive view point.  She agrees with what Ricky says and confirms that it may in fact just be another autoimmune disease but if that is not to be then there is a very distinct possibility that I may in fact be forming cancer somewhere and it is this crazy autoimmune system of mine that is actually going to save my butt as it is letting us know in loud and in no uncertain terms that something is very wrong.  She said that if cancer is on its way I can actually thank my autoimmune system and this disease for possibly saving my life because if I do develop cancer they will find it early and be able to treat it before it is too late.  What a strange turn of events that would be to have the thing I dislike the most in my life actually save my life… that would be such a strange twist of fate.

to be human is to be broken and broken is its own kind of beautiful. – Robert. M Drake

Needless to say I did not leave the hospital today as my usually cheerful self.  In fact I sat down in the lobby to have a good cry and didn’t give a crap who saw me doing it.  I still don’t think I will get cancer but I really am overwhelmed at the thought of this hanging over me for the next five years.  I am also going to be a giant baby and admit that I don’t want to have to do all of those tests over and over again for the next few years constantly waiting to hear if I have finally gotten cancer.  No worries though, I will put on my big girl panties and I will rally and I will start being happy again very, very soon, just not today.  Yet there are tiny messages out there that give me comfort every single day and always come in times that I seem to need them the most.  Last night, after first getting the test results, Bonnie Thompson, a psychic that I once visited for a healing session messaged me out of the blue to see how I was doing and sent me a heart picture.  Her timing was so very weird and perfectly perfect as there was absolutely no reason for her to contact me out of the blue.  Then today, when I felt just horrible, I went to restock my frequent user parking pass for the hospital and the security guard looked at the card and said it was still full.  I knew that I had used up all of my parking so I sniffled and let him know that it was wrong and that it should be empty.  He took one look at my sniffling red, face and said “…well it is saying it is still full so let’s just stick with that because you look like you could use it today.”  So I got about sixty dollars’ worth of free parking which was completely awesome and put a big smile back on my face.  I called my mom and dad from the car in the parking lot and they helped to make me feel better too.  Even when you are in your 40’s there is nothing like a mom to put everything in perspective and make you feel better.  Then I headed home.  Riverside Drive is quickly becoming my street of tears as I have now cried my way down that road many, many times but by the time I got to back to my hood, I had pulled myself together, as I always do, and I am good now.  There is no sense worrying about something that may or may not happen.  I refuse to waste years of happiness worrying about something that may never happen.  Thank you Norrie for that one!!!  So I will buck up and get on with it, starting with making Christmas cookies tonight with my kids, and maybe I might not be happy tonight but by tomorrow I surely will be.  Cancer retesting starts next week!  Bring it on!  Feeling a little more broken than beautiful tonight.  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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