Doctors orders and homemade mishaps

For those of you who don't know me or are just joining me on my blogging journey, I get meningitis.  Too much.  Well actually, once is more than enough don't you think?  Anyway, it started in early December of last year when I spent four days off work, at home and miserably sick.  Fevers, vomiting, and piercing headaches.  My doctor's PA said it couldn't be meningitis because I was still able to bend my neck. Of course, she didn't realize how atypical I am...a medical oddity if you will.  Less than two weeks later, I was rushed to the hospital via ambulance due to a high fever, vomiting, blinding headache and "shigors" (extreme shaking rigors from the fever).  At that point, I most definitely could not bend my neck.  Within hours, I lost all capability of speech and eventually I lost consciousness and didn't regain it until two days later.  All of the tests turned up negative (see above comment on medical oddities) and I was sent home on ten days of very strong antibiotics.  I was hospitalized again two days later for three days and then a few days after that for another seven due to complications of the illness/treatment/tests.  Finally, all seemed clear.  Until January 22nd that is when the fever, vomiting, shigors and headache started up again.  Another week in the hospital with a whole bunch of nothing on the test results.  Thankfully I saw my Rheumatologist for a regular check up in February and once he heard about my odd cases of meningitis, he realized that I was experiencing a very rare symptom of my disease, Sjogren's Syndrome (SJS).  Apparently meningitis without infection can plague people suffering from SJS but it is extremely rare and therefore none of the doctors treating me at the hospital recognized it.  My Rheumy put me on a new medication that was meant to keep the SJS in remission and lower the symptoms (in addition to the meningitis, I have very dry eyes and mouth along with parotid glands that swell and shooting pains in my nerves due to neuropathy).  Minus the side effects of the drugs, all seemed well until April 1st when I landed back in ICU with another bout of meningitis.  He put me on a new medication.  An anti-rejection drug that organ transplant patients use in order to trick their body into not rejecting the new organ.  In my case, it's supposed to suppress my immune system so that it stops attacking my body which is what causes all of my fun symptoms.  Since I've been on the Cellcept, I have had at least four occasions where the meningitis symptoms have started.  Thankfully, I have a standing steroid prescription and within 24 hours of taking them, the symptoms begin to go away.  That being said, no one likes taking steroids.  Especially not in the doses I have to take them in, as well the fact that I have to take them for long periods of time to wean my body off of them.  

I went in to see my Rheumy yesterday for my check up (these have been every month to two months since my SJS symptoms have gotten out of control) and he has increased my Cellcept dosage to 2000 mg (I am currently on 1000 mg) a day.  Ugh...lovely side effects are coming my way!  I have a standing order for blood work because of course, drugs like steroids and Cellcept can wreak havoc on your body.  Due to my SJS, my white blood cell count (and therefore my immune system) is already naturally lower than a normal persons.  Right now it's hovering at 3.75 but if it hits 2.5 we are in the danger zone.  This increase in Cellcept will likely lower it even more.  If this dosage doesn't work, he will move me to Imuran which is another drug similar to Cellcept.  I have only two more oral medication options before we move to an IV drug that is similar to chemo (on the bright side, that would give me the excuse to shave my head again!).  

There are days where I don't think about my medical ailments at all.  There are times where I freely enjoy life without any symptoms hindering me.  But then there are times where I will have tooth pain, or limited vision due to my dry eyes, or swollen & painful joints and I will think....WHY ME?  This morning, my devotional was spot on though and it is something I will write down to keep in mind always.  "God can remove our illnesses and change our circumstances in an instant-the moment they are no longer needed for His divine purposes.  Until then, or until He takes us home, we can rest in the fact that our illnesses are part of His good purpose for our lives.  God truly uses all things."  AMEN!  He uses our health and our circumstances, whether good or bad, for His glory.  Who am I to argue with that?

Enough of my medical drama....on to the homemade stuff!  Yesterday I attempted to make homemade yogurt in my slow cooker.  I also made cinnamon toast crunch cupcakes.  When you have been on a roll of a lot of new recipes turning out great, it's always such a downer to have a few flops.  Or learning opportunities.....  The cupcakes turned out great...but when it came time to decorate them, the frustration began.  It was suggested that the frosting be piped on.  I have zero artistic skill and have never attempted to use decorating bags and tips.  The first cupcake turned out ok:

  But after that point, the frosting wouldn't come out of the bag.  I've come to the conclusion that the crushed pieces of cereal clogged the tip and I ended up frosting the rest in the plain old fashioned way I normally frost items.  

As for the yogurt....once it was done it was definitely yogurt and thick enough, until I added maple & vanilla to the batch.  It started to thin and got even thinner when I blended some with strawberry for hubby's lunch.  I'm going to research other recipes today and see if I can find a work around to this.  No one in my  house will eat plain yogurt..it only gets used for cooking.  So I definitely need to be able to create vanilla and a few other flavors of yogurt that does NOT have the consistency of milk.  Any suggestions????

Kidism for the day:  Hubby & I recently talked to the kids about finances.  We explained that since I am no longer working, our budget would look and feel very different than before.  We asked them to be understanding as well as helpful in coming up with money saving ideas.  Later that evening, I found our letters notebook (see this post about a notebook my daughter & I use to write letters to each other) under my pillow.  My baby girl had tucked in $2 with a note that said "I have been saving this money for us. Please don't give it back, you need it more than I do."  It can be said that I will cry at the drop of the hat, so it should be no surprise that Ani's little note brought me to tears.  My daughter is so generous and giving.  This is a memory I will forever cherish.