Back to Life

I don't want to jinx myself but I find that I am feeling somewhat hopeful that we've found a possible solution to the meningitis issue.  It has been almost a month and a half since I've had an incident and that's the longest I've gone since September.  I met with my rheumy last week and he has decided to wean me off the steroids in order to see if the Rituxan is working.  I am so excited to be off the steroids!  I am ready to take some of my life back from illness.  It's the first time in over a year where I find myself able to look forward and see things besides continued hospitalizations in my future.

From what I have read of other people's experiences with Rituxan, it sounds as if I might even get some of my energy back for the next few months.  Right now, I'm still dealing with some major exhaustion from the treatment itself but once that wears off, I have hopes that I will be able to become a bit more active.  I would really like to shed these steroid-induced pounds!  

I am so thankful to God and to all of the people who have been by my side through this.  Without all of you, I wouldn't have made it far enough to see a possible light at the end of the tunnel.     

Revenge of the Meninges.....

One thing I have learned with this disease....never assume.  Never get complacent while your symptoms are in remission because you never know when they are going to rear up and bite you in the tush.  This week for example.  I had many things to tick off my to do list.  By Monday afternoon, I had our bread baked (and somehow managed to break the glass plate in our microwave, go me!) but I started to feel quite blah.  By 2 I was on the couch, by 2:15 I was shaking with a headache and a fever and by 2:45 I called my husband home.  By 5 I was in the hospital getting my 8th spinal tap of the last 10 months.  My temp was at 103.  The nausea and vomiting began.  Sure enough, meningitis strikes back...AGAIN.  This was my 5th bout since mid December.  I was moved into an ICU room by 11 and there began the round of wake ups for neuro and vital checks.  The biggest blessing with this stint of meningitis was that it didn't seem to affect my brain as much.  What a blessing!  I always knew who I was and where I was at all times. 

I was in ICU until Wednesday and then moved to a "general population" room as I like to call it where they could stop wearing the gowns and masks.  The MRI was pretty unpleasant.  About half way through I was sure I was going to be ill so I made them stop.  I really dislike MRI's under the best of circumstances but when you are coping with nausea and headaches from meningitis as well as a headache from the spinal tap, it's no walk in the park.  

The two best things about being ill is all the prayers & love that pour out to us from family, friends and our church family, as well as the lovely visitors I get in the hospital and at home afterwards.  This time around an old old old (yep David, you are OLD!) friend came up to visit whom I haven't seen in years.  He came bearing chocolate ice cream!  :)

Tuesday had been miserable with headaches and pains.  By Wednesday night I was able to wean off all of the pain meds which is wonderful.  Thursday morning I was raring to go and the doctors were so surprised (this what happens when they give you intravenous steroids that would make a football player happy) but they released me!  

Now the recovery journey begins.  Building up my energy, getting back into sleeping at home without hospital wake ups but with other distractions like husbands and dogs, learning to take it easy (which, ask anyone who knows me, that does NOT come easy to me) and to just relax.  

I'm looking forward to a weekend of nothingness.  I'm knitting my boy a hat, and will work on some other projects that only require me to sit on my rear and relax.  I am hoping next week I can start to (SLOWLY...so don't yell yet Lea) get back into the swing of things.  Here's to hoping we can keep the meningitis at bay......

Meningitis strikes back....

One of the most nerve wracking aspects of Sjogren's Syndrome is that there is no predicting when the symptoms will strike and how bad they will be. I woke up in the middle of the night last night shivering and feeling horrible.  I had a fever, my head was pounding and my neck hurt.  I was still able to bend my chin to my chest but it was painful.  Hubby hopped right out of bed and made a mad dash for the medicine cabinet (which is quite well stocked in our house) to get me the Prednisone.  This has definitely been my worst "attack" since I was hospitalized in April and my poor husband is a wreck.  I woke up feeling a bit better this morning (the joys of steroids) and my temperature is back to normal but I am completely wiped out.  Purely exhausted and there is no energy or motivation to be had.  This makes me so thankful that I am able to stay at home.  No boss to get angry if I call in sick...the worst that will happen is that the daily cleaning & laundry may not get done.  I am so blessed to have a supportive husband and great kids who will pitch in and help out when I'm laid low by my SJS.  

Now on to updates on monthly grocery shopping and the homemade journey.  On Monday I attempted to make a few loaves of bread for use in French toast and sandwiches.  The texture was wonderful but I'm going to have to get used to the fact that the homemade stuff isn't going to be the same size & shape as the store bought stuff.  Does anyone have any suggestions on getting it to turn out more like the store bought stuff?  

The rest of this week will be relatively easy on the homemade front.  Today I will whip up my first batch of homemade laundry detergent.  Tomorrow I need to make some buns for the hearty Italian sandwiches I will be making for dinner.  Friday I will do the next week's desserts...I'm thinking homemade Thin Mint cookies.  Num!  

Here are a few of the crafty projects I've undertaken recently.

Mason Jar Mummy

 This was a super easy project that simply required Modge Podge, a mason jar, sterile medical gauze and googly eyes.  I have a LED tea light in the jar.

Thankful pumpkins

 I still think these would have looked better with white pumpkins but I couldn't find darker letters.

And finally, Aidan's winter scarf for this year

Oh and a grocery shopping update:  I didn't plan well enough in regards to shredded cheese & peppers so when I make my run tomorrow for milk and eggs (in the last week & a half we've gone through 4 1/2 gallons of milk and almost 34 eggs!) I will have to pick some up.  It'll be another $30 added to my grocery bill for the month but still much better than the $600 I would have normally spent in the past!