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!
I would call that an oxymoron, no? One has only to think of chemotherapy to know that sometimes in the medical world doctors give you a treatment that makes you far sicker than you originally felt in order to combat your illness. It seems backwards to me but I'm not the one with the medical degree. I am currently on 2000mg a day of a prescription whose main job is to suppress my immune system. Lovely! Just in time for flu season and I'm coping with my first cold since the medication started. The only physical difference I've noticed so far is that it seems to be lasting longer than a normal cold lasts but it has made a definite difference to my social calendar.
Let me explain my husband for a moment. Jimmy is amazing (of course, I am a bit biased), loyal, generous, caring and protective. I can't even imagine how he suffered during my first hospital stay for meningitis. I lost consciousness on Monday evening and didn't regain it until Wednesday. He kept vigil over me, praying nonstop and pacing. Our church family was wonderful and lifted us up in constant prayer which I know helped carry Jimmy through the ordeal as well as my best friends giving him all the support he needed. You can imagine that my illness (as well as how lightening fast it struck) made him a bit paranoid. Even worse, it continued to happen. Our oldest kid jokes that I scarred dad for life. He won't go visit his friends on the other side of the state unless a friend can stay with me (yes, apparently at 36 I still need a babysitter!).
So...because we aren't sure what my colds will look like on this medication and we don't know if colds will morph into something like pneumonia, Jimmy has gone into full papa bear mode. We had a weekend full of plans that we've had to cancel. Instead of the high school Homecoming game last night, we stayed in and watched Snow White & the Huntsman. Today instead of doing a Komen 5K with my daughter and some friends, I made a batch of homemade yogurt, an Oreo poke cake and dinner rolls. And finally, instead of celebrating my nephew's 8th birthday tonight, I've been knitting and watching college football. I do definitely enjoy quiet weekends at home with my family, but I am sad that I had to miss out on all the fun stuff we had planned. It is worth staying healthy but there are days when I just want to throw a temper tantrum. Oh well....at least I've read three books in the last few days....that can never be a bad thing, right?
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.
Whew! I have spent the last two days doing enough grocery shopping to last us a month. I spent most of last week reading suggestions on how to do this, coming up with meal plans, seeing what I have in stock here and making up shopping lists. On Sunday, we picked up the newspaper so that I could also go through the ads and coupons. I feel confident that the next time I do this, it won't be as time consuming and it will definitely be more efficient.
This time around, I wasn't always sure which store had the best prices. I took the advice I found in both blogs and in the book "America's Cheapest Family Gets You Right on the Money" by the Economides and started noting the price and size of certain items (like flour, sugar, cornstarch, etc) at each store. I also had to go on a scavenger hunt to find the supplies I will need to make my own laundry detergent, fabric softener, household cleaners and hand soap. This resulted in going to both Apple Valley Health Foods and Harvest Health Foods. I won't need to pick up those supplies regularly in the future and now I know that Harvest Health Foods is the place to go. I'll also be looking online for a good resource for essential oils since HHF did not have all of the scents that I wanted.
All in all, the shopping spanned over two days, at eight different stores and probably took me about seven hours including unloading and putting away. Yesterday I hit Target, Meijer, the dollar store, Apple Valley Health Foods, Harvest Health Foods and Sam's Club. This morning I finished my shopping out with a trip to Horrock's and Aldi's. Because I am way too particular, I had to put everything away as soon as I came home from each trip. Unfortunately, I forgot to take pictures of all of my great finds...but here is one from my final trip to Aldi's this morning:
This was my largest trip and took the most time to put away. Now it feels like every nook and cranny is stuffed to overflowing and I feel like I've accomplished something!
Here is our back freezer....I don't think I could fit much else in.
And some of our pantry cupboards
I tallied up my receipts and it came out to a total of $437. It went over my budget of $400 but it's not bad for my first trip. I also bought several items that I won't need to buy every month like all of the supplies for my laundry detergent, etc etc. In addition, Aldi's had boneless turkey breasts for $7.99 and we always get one for Thanksgiving in addition to a 16-18 pound turkey so I just couldn't resist for that price!
In further homemade adventures, I started my very first attempt at making yogurt this morning. I'll let you know how it goes tomorrow!
Yep, that's what my BFF (and yes, I still call her that..or bestie...how old am I?) has started calling me. She is convinced that I have gone over to the domestic dark side. Don't think she won't use this domesticity to her advantage though. She has issued a challenge that I just had to accept to create baby chicks out of deviled eggs like so....
It is highly coincidental (nudge nudge) that my nephew's birthday party is this coming weekend and said nephew just happens to adore deviled eggs. Yep uh huh....
Enough of that...I will post pictures (if it turns out!) once I create the baby chicks.
Life has been busy here in the Chase home. We had our full family together this weekend which always involves lots of cooking and dishes as well as laughs and good times. I took all the kids to see Finding Nemo in 3D. We all love that movie and most of us can quote it by heart("I will call him Squishy and he shall be mine. He shall be my Squishy.") It was neat seeing it on the big screen but it definitely was not worth the 3D ticket prices for 3D. After that, we all watched Snow White and the Huntsman which is one of my new faves.
In my homemade adventures I made my own taco seasoning, baked some delicious and ridiculously easy crusty bread (recipe here), and made my husband some peppermint mocha coffee creamer (he is addicted to the York creamer). This week is also our first attempt at doing our grocery shopping only once a month in order to be better stewards of God's money. It feels like I spent all morning shopping and I still have two more stops to make tomorrow. On the other hand, it'll be great to not to have to go to the store two or three times a week. I will still need to get milk but only once a week or so. We tend to go through about three gallons here a week and it would be impossible to store it for an entire month. I will share tomorrow about all my finds and how close I stayed to my budget.
And on a completely unrelated note.....Aidan & I had a conversation about college today. On our way to his PT session, we saw a city bus dropping off several students at one of the downtown campuses for GVSU. Aidan asked me if it would make me happy to have him go to a local college. Of course!!!!! He then proceeded to ask how far away GVSU was because he wanted to make sure it wasn't too far of a drive for me to drop him off at class everyday! LOL I find it absolutely adorable that my pre-teen boy thinks I will be driving him to class when he's in college.
Have you ever plotted your course, laid out your plans and pushed full steam ahead with whatever you wanted to do? That is me to a T. I am a planner by nature and a control freak by genes. My husband used to joke that I knew our vacation schedule for the next ten years...and my friends frequently refer to me as the tour guide or social planner. It's not just vacation and social plans that I make though. I plan EVERYTHING. If this gives you any idea, I am currently three gifts away from being done with our Christmas shopping.
This may all sound grand and wonderful, but as a child of God, I should be leaving the plans up to Him. "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 Why is it that I struggle so much in giving up control to God? And then, when things don't go the way I planned or hoped, I flounder and stress and try to plan my way through the chaos. Now I know, truthfully I do, that I need to hand the reins over to God and trust in Him. My favorite verse talks about it and I even have it tattooed
"I will trust and not be afraid. The Lord, the Lord, is my strength and my song. He has become my salvation."
I was reading 40 days with Jesus yesterday and a few key quotes stood out to me:
"Sometimes My blessings come to you in mysterious ways: through pain and trouble. At such times you can know My goodness only through your trust in Me. Understanding will fail you, but trust will keep you close to Me."
Or even this not so gentle nudge...
"I want you to embrace all that I am doing in your life, finding your security in Me alone."
Every time I feel that I am growing and maturing in my faith, something comes along to shake me to the core. I know this is a lesson from God and I need to buckle down and learn it. Trusting in God is so very difficult for me, but He is the only way I can make it through.
"My grace is sufficient for you, for my power is made perfect in weakness." 2 Corinthians 12:9
I am so weak Lord, please forgive me and enfold me in your loving arms so that I may rely solely on your strength.
One of our favorite times of year in this family is fall. Fall means football, trees on fire in bright reds and oranges, chili in the crockpot and roast on Sunday, fires in the fireplace and the smell of pumpkin and cinnamon scented candles throughout the house. Fall also means Halloween and our family really gets in to Halloween. So much so that we seem to decorate for it earlier and earlier every year. This years decorations went up yesterday and the kids are loving it!
First we have a new addition to my Boney Bunch collection
Then it is some of our Halloween night lights
The kitchen witch and other assorted cute things
Our new, dimensional bats
And the rest of my Boney Bunch
Now it's time to light some scented candles and get down to some fall baking!
