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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Health Update, Still Battling Chronic Autoimmune Disease but Loving Life

Health Update, Still Battling Chronic Autoimmune Disease but Loving Life

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I haven’t had time to write much lately between , work, kids end of year events, dealing with a few new health issues and battling with insurance agencies and the province in hopes to get coverage for the meds I need. So here is a little update about what is going on now.  I am feeling pretty good, which is interesting because I have a mouth that is currently full of infection.  My doctor has raised my dose of Prednisone back up again, since my muscles were quickly weakening on the lower dose and I was choking on fluids and food again.   My mouth was also full of sores.  This sounds terrible but sores caused by your immune system really don’t hurt, they are more just a bother.  That is until you raise your Prednisone, lower your immune system and then one of the sores gets a massive infection at the back of your mouth. We are talking a huge, disgusting puss filled infection; so gross!!!  I didn’t even realize I had one until the infection exploded in my mouth and I began yelling in disgust at the horrible disgusting taste.  This was followed by each of my kids taking turns flashing a flash light in my mouth while yelling “EWWWWW” “GROSSS!!!!!” and a variety of other words that they should not have been saying but I will admit I was yelling them out too.

 

My doctors quickly put me on antibiotics a couple of weeks ago to try and get rid of the infection but they did not work and I now have to have emergency surgery tomorrow to yank out the rest of my molars on the upper right side of my mouth so that they can drain and treat the infection in my mouth.  They are also going to put in an implant to help support the remaining teeth on that side of my mouth since I will literally have zero teeth to chew with anymore.  It gets worse!!!!  In order for them to fit me in so fast for the procedure, they have to do it before regular office hours so I cannot be sedated in anyway.  I realize that they are going to freeze it but going through a two hour extraction, bone grafting, infection draining and implant while awake has me a little bit concerned and very nervous.  The good news is that the Prednisone has completely masked the symptoms of the infection.   So I feel fine even though I have a major infection that should really have me bed ridden with a fever, instead I hardly feel it at all.  Prednisone does have its perks for sure.  I have spent a few days pretty cranky over the whole situation anyway as when this stupid autoimmune disease hits my delicate sense of vanity I tend to melt down a little bit and losing my teeth is a little bit emotional for me and I am fearful as to how long I will actually keep the remainder of my teeth.

 

In addition to the stupid mouth infection I have also been battling with stomach issues that we are trying to figure out.  Not sure if I have an infection or if autoimmune disease has decided to hit my stomach and bowels but over the past six weeks I have been unable to keep food in my system.  I don’t feel ill, as long as I don’t eat anything but if I do I need to be really, really close to the bathroom.  LOL  This has resulted in my losing a little bit of weight, which is great as I lost the twenty pounds I packed on with the Prednisone but also has resulted in my feeling pretty crappy as my B-12, Iron and Calcium has dropped since I am not processing nutrients from my food anymore.  It has also resulted in my skin becoming like sand paper as I am chronically dehydrated all of the time now.  The good news is that all of the antibiotics that I have been on have seemed to help my stomach some and my symptoms are starting to get better.  I am hoping that once the infection is gone and I finish my last dose of antibiotics that my stomach issues will resolve themselves as autoimmune in my digestive tract will not be fun.  The weight loss, of course was the first symptom to go away as the raise in prednisone caused me to immediately put on five pounds of swelling on my face.  Nice!  That was one symptom I was hoping would hang on for about thirty to forty more pounds but my luck cannot be that good these days!  Sigh!!!  Still chubby, no hair and now no teeth!  Blah!!!!!

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The infection has unfortunately pushed off my Rituxan treatments so that I will not be able to get my first dose until the first week of August, once the infection has completely subsided.  They cannot kill my immune system until the infection is gone and my mouth is completely healed from the teeth being pulled and the implant being placed.  So I am still waiting.  No news that I can share yet on the Rituxan coverage from the insurance agencies but I have been denied by Trillium too… twice.  I am still pursuing coverage actively and ferociously and Roche will be giving me some discount on the price of the drugs.  Between the discount from Roche and all of the money raised by so many amazing people in my life, I am good for the dental surgery and implant I have to pay for tomorrow as well as the first two Rituxan treatments and it is such a relief to be able to not worry about the financial issues while I continue to try to get the Province to approve this drug so that it will be covered.  I have been so touched by everyone who has stepped up to help out myself and my family.  I absolutely hated needing help and I will be paying it all forward very, very soon but I can’t express how touched I was to see family and friends step up to help me out.  I love you all so much.

 

Now I don’t want anyone to think that I have been sitting in my house ill and depressed because that is far from the truth.  All of this crappy stuff does keep happening like a crap storm that just won’t end but there has also been so many wonderful things happening too.  I do feel pretty great with my Prednisone back up again and I am surprisingly well considering I can’t keep food in and I have an infection.  My drugs mask all of the symptoms so I not only don’t look sick but I really don’t feel bad at all.  I am just exhausted by the end of the day.  The past few weeks have been a blur of activities with the children as the end of the school year closed.  These events included, heading on a very hot field trip to Upper Canada Village for the Medieval Festival with my daughter, volunteering to bake and help with the candy bar for my sons’ graduation, heading out to an all-day track meet to cheer on my baby girl as she came second in Ball Throw,  taking off for a weekend in Toronto to cheer on my daughter as her team annihilated all of the Toronto soccer teams, helping my oldest study for his exams, and then dealing with the death of our beloved hamster Hammy.  In addition there have been a lot of extra work projects as I finished up monthly lesson plans and helped to get Rashid all ready to head off to China and London where he is meeting with three potential, future franchisors.  Between these events, work, and a billion doctor and dentist’s appointments I have had little time to write but I am hoping to get back to it now.

 

It is a busy life and I am so grateful to all of my doctors who are working so hard to keep me medicated and going strong so that I can enjoy and participate in every aspect of my job and my children’s lives.  The truth is I really appreciate everything that I get to do and help out with.  It gives me a little thrill to be able to be well enough to bake up cookies and help with my son’s graduation or head off for a day on a field trip with my daughter.  Where others may look at these tasks as chores I am just thrilled to pieces that I am well enough to participate and I appreciate every second that I get to spend with my children and family.  I may break down occasionally, mostly because I am exhausted, but I would not change a thing about my life.  In two weeks I am heading to my favorite place on earth and will be spending two weeks at Bays Water Beach in Nova Scotia.  I can’t wait to see the old beach house and see our friends and family.  14 days of watching the kids and dog run wild on the beach and in the forests.  Sitting by camp fires and reading books on the beach!!! Heaven on earth!!!!  I will be posting many happy blogs in the next few weeks.  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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