Me?? Right now I am a mess. I am making no more promises about blogging because I’ve broken every one of my previous promises. I can’t imagine why people want to read about me right now. I am not doing anything spectacular. But… I also realize that many women and men are on my journey, not my exact journey, but a painful one nonetheless. So… I will blog about it.
I have multiple sclerosis, which, surprisingly, is under control right now!! I take a Tysabri infusion every month. I am very sick for three days afterwards, but I have not needed my cane for three months and I don’t have that “drop-dead” fatigue that I have suffered with for years. If I could only get my TN (trigeminal neuralgia) under control. Those of you who follow my blog know that I had MVD surgery in 2010, which eliminated the pain for one year, but ultimately was unsuccessful.
My face is alive and on fire nearly every minute of every hour of every day. I take strong meds for it, but they only cut the pain down by about 20-30%, no more. As a result of the spasms from the TN pain, I have developed TMJ (Temporomandibular disorder). I have worn a splint for 6 years, but it isn’t helping right now. My jaw feels out of line and I cannot chew anything hard without excruciating pain. I am right now using ice and heat along with the pain meds. I get a massage once a month and it provides temporary relief, i.e. a night of uninterrupted sleep.
We have had an endless winter here in western PA. I am probably a little bit depressed. However, I am happy to report that I haven’t spent one day totally in bed (except for the one day after my Tysabri treatment each month).
I’d like to encourage those of you who “feel my pain” and give you some helpful steps to follow as you “behave” your way through the day.
- Get out of bed. Yes, I mean purposefully put your feet on the floor, not just to go to the bathroom to pee.
- Change out of your pajamas. In January, I realized I was wearing my PJ’s every day I stayed home so I bought some pretty yoga clothes (on clearance at Kohls) to wear every day.
- Brush your teeth, wash your face and comb your hair. I shower at night because it helps me to relax before my usually fitful night of sleep. I moisturize like mad — hey, I’m 53 and I need to keep this fabulous face in good condition . I also groom my eyebrows ; it drives me crazy if I’ve got a stray hair. However, that is my OCD madness so I’m not including that as a step for you!! I also weigh myself every morning — that keeps my weight under control in this sedentary period of my life.
- Make coffee, tea, whatever you like. Take your pain meds and eat breakfast. For me, breakfast is either Special K or Kelloggs Corn Pops. After I eat breakfast, I can assess my pain level and plan my day.
- Spend time in the Word and prayer — this is my peaceful communion with my Lord. I truly cannot go one day without even just a time of prayer.
- Consult your calendar. I use Google Calendar and absolutely love it!! I love lists and calendars. Depending on my pain level, I will include some rigorous household chores or exercising on my list. If it is a bad morning and I’ve had zero sleep, I plan just a few simple things, like washing clothes (simple in this day and age), dusting, making jewelry, painting or sewing. I decide in the morning if I am going to cook dinner (for my darling DannyO and my parents). If the recipe calls for chopping preparation, I get that done in the morning because usually by 3:00 my pain is at its worst… ’nuff said.
- Use a timer. If I am having a painful day but must complete tasks, I set my timer… 45 minutes of work, 15 minutes of rest. Just knowing there is an end to the work period encourages me to complete the task.
- Turn the TV off!! TV is a wonderful thing, but when one is in the house all day, it can be a mindless waste of time. I’ve got my Ipod deck in the kitchen and my CD player in my art room.
Today I am making apricot rolls for my niece’s wedding this weekend. I chopped the dried apricots a few days ago in anticipation of this day. I reconstituted them and they are in the refrigerator cooling. I have my dough in the bread machine and in about 1 hour I will be rolling out four pieces of dough and my house will be filled with the glorious smell of baking apricot rolls.
I do a lot of self-affirmation. I have an on-going (sometimes out loud) conversation with myself and my Lord. I pray for people through the day. I pray blessing on my children and hubby. I pray that the Lord will give me grace to make it through the day. I tell myself I am proud that I made it to noon time and didn’t crawl back into bed with an ice pack. I watch the birds and listen to their songs.
Today, my Ipod is programmed to playing songs alphabetically. ”Fingerprints of God” is a song I’ve sung, even wrote parts to, but only today did it speak to me.
I can see the tears filling your eyes
And I know where they’re coming from
They’re coming from a heart that’s broken in two
By what you don’t see
The person in the mirror
Doesn’t look like a magazine
Oh but when I look at you
It’s clear to me
That I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it’s true
You’re a masterpiece that all creation
And you’re covered with
The fingerprints of God
Never has there been and never again
Will there be another you
Fashioned by God’s hand and perfectly planned
To be just who you are
And what He’s been creating
Since the first beat of your heart
Is a living, breathing
Priceless work of art
Just look at you
You’re a wonder in the making
And God’s not through
In fact, He’s just getting started!
I’m not sure what His plan for me is. If I am honest, I will say that I don’t like His plan sometimes. But I will move through today with this song as my mantra… “you’re a masterpiece that all creation quietly applauds.”
Is it Spring yet??? The calendar says yes, but as I look out my window I see gray skies and snow. If I stick my nose out the door, it will confirm that the temperature is below freezing.
It is hard to blog when all you have to blog about are struggles. Although, I believe that an honest dialogue about my struggles with multiple sclerosis and trigeminal neuralgia could be helpful to others, I am fearful. Afraid that people will roll their eyes and say, “There she goes again.” Afraid that I will become like the boy who cried wolf. Afraid that people will simply stop listening. And so I neglect my blog.
My precious friend, Jenn (who is one of my personal prayer warriors), reminded me of this verse today. “The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8. Does that sound like a commandment to you?? It does to me. ”Do not be afraid; do not be discouraged.” Hmmmmm… but I am afraid, afraid to leave the house (literally). And I am discouraged, bogged down by ever-present pain and fatigue.
Well now, what to do?? Today, I am going to take off my pajamas, put some warm clothes on and go outside. I am going to the grocery store. I am going to work through the tasks on my ever-present list. I must work on a jewelry project.
I may, if I can control my pain, look through my summer fabrics and make plans to sew a summer dress.
See, I’ve blogged too!! There you go!! And as my Grammy always used to say, “It will be otay.”
I spend many nights, prowling around the house, seeking comfort from trigeminal neuralgia pain, just enough to get a little sleep. I have learned to be quiet as a mouse so I don’t wake up my darling hubby, DannyO. I have figured out how to put the microwave on silent so I can heat my rice bag quietly. I have my house memorized so I don’t have to put any lights on. I pace and pray, pray and pace… I have been sick with MS and TN for 23 of our 33 years together. That’s a long time!!
The other night I realized that I had forgotten to let Dan know what my day was going to look like. It is our habit, after almost 33 years, to let one another know where we will be during the day. (He will say, “I’m going to start in Johnstown.” I will say, “I have to go to Donnie’s and then to the grocery store.”)
I proceeded to write him a note, rambling in parts (hey, I was exhausted!!), but listing what my plans were for the day. I finally was able to get to sleep. The next morning, I didn’t wake until Dan was already gone for work. He wrote his note to me on the blank side of my note. As I re-read my note, I realized that, in my exhaustion, I wrote something very profound… after detailing my plans for the day, I simply wrote, “Thank you for loving the broken parts of me.” He does and I am overwhelmed to think that, after all these years, it is still the truth.
Thank you for loving the broken parts of me
Christmas decorating in our house is divided into two events… the snowmen and the tree. The week after Thanksgiving, I put up my snowmen/santa decorations — and, as I set them out, I remember how I received them. ”The tree” is a separate event. DannyO and his brothers go to a tree farm every year and, pick out trees, cut them down, eat fish and chips, and drink some holiday cheer. Our tree is usually 8-9 feet tall and takes one day to put up and two days to decorate. If I didn’t live with a boy, I’d have my snowmen and a tiny tree…
Today, while Dan is at the tree farm, cutting down the tree, I thought I’d share my decorations with you — along with my memories of them.
I have a few favorite blogs I peruse weekly. One of them is Team Studer — I love reading about Tab’s adventures with her two children and darling hubby. Another blog I read is One Creative Couple. I took painting lessons from Paul and Cathy for about 5 years. They encouraged my talent, encouraged my soul, and offered me friendship.
Paul and Cathy wrote a blog about creating distressed metal, aged pewter, and mercury glass. The section on the mercury glass intrigued me. I let the idea marinate in my brain… Hmmmm… I bought a bouquet of dried Hydrangeas from a booth at the Potato Festival and didn’t know what I was going to do with them.
- Glass vase (I purchased mine from Goodwill for $1.99)
- Krylon Mirror Spray Paint (must use exact paint).
- Painters tape and newspaper
- 50/50 solution of water/white vinegar in a spray bottle
I taped the outside of the vase well.
The important thing to remember is, you must spray the INSIDE of the vase. As you can see, I chose a warm November day to take my project outside. Make sure to wear gloves. It was a little tricky to get the mirror paint inside a curvy vase, but, with a little effort, I did. Paul and Cathy say to spray four light coats, giving one minute of drying time between coats. I must admit that, because of all of the curves, it took me a few more coats to get everything completely mirrored.
I then took my solution of white vinegar/water in a small spray bottle and sprayed the inside of the vase. I let it sit for a few minutes. Then, taking a paper towel, which was also soaked in the solution, I started to rub some of the mirror spray off. I allowed it to happen organically. It took a little elbow grease because I think I sprayed too many layers of paint on some of the curves
Ta-Da!! It is a beautiful addition to our kitchen table. The blue doily was my Grandma Amelia’s.
This casserole is a staple in our house. I have made it for 30 years, with a few changes to the original recipe. My kiddos and darling hubby love it. It is fast, easy, little effort, high reward! You can use a lower fat soup, mayonnaise (I use miracle whip) and make it with rice instead of the bread crumbs. I pre- cook the chicken in my cast-iron skillet, seasoning it before I bake it. You can also use left-over grilled chicken. I have never made it with dark meat, but I’m sure it would be good too.
- 1 family-sized (19 ounces) bag of frozen broccoli or 2 bunches of broccoli (cooked)
- 3 cups of diced chicken or 2 whole chicken breasts, cooked and boned
- 2 cans of cream of chicken soup (you can use the lower-fat version)
- 1/2 tsp. curry powder
- 2 cups shredded cheese, divided (I use what I have, cheddar,(sharp or mild), colby or monterey — any combination will work
- 3/4 cup of mayonnaise or miracle whip (again, you can use a lower-fat version)
- 1 tsp lemon juice (1/2 lemon, juiced)
- 1/2 cup soft bread crumbs or 1 cup instant rice
- 1 tbsp butter
Pre-cook the chicken, cool slightly and dice. Cook broccoli. Cube 3 or 4 slices of bread (I’ve used sourdough, white, wheat, Italian… whatever I have on hand). Put in a bowl and dot with the butter — cook in microwave for 45 second or so, just until the butter is melted. Stir to blend the butter.
In a 11 1/2 x 7 1/2 in. baking dish, layer the cooked diced chicken and cooked broccoli. Combine the soup, mayonnaise, lemon juice, curry powder and 1 cup of shredded cheese. Pour over chicken and broccoli. Spread bread crumb mixture on top of soup mixture. Then spread remaining cheese.
** If using instant rice, start with 1 cup of rice in bottom of dish and omit the bread crumbs.
Bake at 350 for 30 – 40 minutes or until heated through. The baking time will be longer if using cold left-over chicken. Makes 6-8 servings.
“Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.” ~~ Ephesians 4:32
The other evening, my sister, Sue and I were visiting at Momma and Daddy’s house. Momma isn’t in good health and often says things out of the blue that have nothing to do with… well… anything. As she was walking up the stairs, she peeked her head down and said, “Now I want you girls to be nice to each other, okay??”
That phrase was common in our house. Momma would repeat this, when I was probably 11 or 12 and all five of us would stay in the house for a short while so she could grocery shop. I must confess that we didn’t always listen to her — kicking, pinching and biting were our weapons of choice.
We were not allowed to speak anything unkind to or about anyone. If Momma caught us talking about someone, she would simply say, “Meow!” and we knew to stop. She taught us that words are as hurtful as fists.
I am so glad that Momma and Daddy worked hard to show us, both in word and in deed, that kindness is the most important of all.
“Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.” ~~ Colossians 3:12
To my mother – Melodye
I can never thank you enough for teaching me the importance of perseverance. You embody character that has been sharpened by the trials and discouragements of Multiple Sclerosis.
I ride for you.
I’m riding because my mother-in-law has had MS for over 25 years, and this is one way to show my support and to raise awareness. Also because biking is fun.
My daughter and her husband are riding in an MS fundraiser, City to Shore, this weekend. Between the two of them they have raised over $1,500.00 to be used for the research for a cure for MS and for programs that help people who struggle with multiple sclerosis. Hengyi rode last year for me. I am overwhelmed to think that two people would love me enough to help in my fight.
In my darkest moments, I remember how hard it was for both of my kids to grow up with a parent who was disabled. They had to make many sacrifices — financial and social — because I couldn’t always DO what a parent was supposed to do. The one thing I do know is that both of them have a “suck it up” attitude!! Our household mantra was: No excuses. Life isn’t fair. Suck it up.
My darling hubby has stayed by my side through the good and the bad, the rich and the poor. We were married in 1980 and he is still my first love <3.
Today is (another) bad day. I have many things that I’d love to accomplish, but they must wait until later. Soon, maybe even tomorrow, I will be stepping back into the circle. I look forward to a day when I can wake up, feel fabulous, and work on all of my projects just waiting in the wings. Until then, I rest, sleep, and pray.
Thank you, Hengyi and Amanda, for riding for me, Miss Carol, and all of the people who silently struggle with multiple sclerosis.
I last blogged on July 28 — I promise, truly I promise, to blog more than once a month. It is so hard sometimes to blog when you are struggling — with pain mostly! My MS has been so bad that I feared I would need to begin to use a wheelchair. My trigeminal neuralgia pain has been off the charts. I can’t seem to get a handle on it and every day has been a struggle. I don’t want to be a blogger who complains, without hope. Truly, though, I have had some moments of despair. So… I neglect my blog.
At the same time, I was feeling intense pressure… (follow, if you can, my bouncing brain)… I have so many creative gifts so I feel I must create. I must create, but I cannot create because just functioning takes all of my energy so I feel like a failure because I cannot create because I have the God-given ability to create so I must create… I can paint so I must paint but I can’t paint so I must be a failure. If I could just paint, but I can’t paint… I can create jewelry, so I must create jewelry, but I cannot create jewelry so I must be a failure. If I could just create jewelry, but I can’t create jewelry… I can sew so I must sew but I can’t sew so I must be a failure. If I could just sew, but I can’t sew… See the vicious circles???
I talked to my “therapist.” I say that loosely because my therapist happens to be my best friend, Juel. I called her about 3 weeks ago and said, “Put on your therapist hat for a few moments.” She listened and asked a few questions and I came to the realization that I have “circular thinking.” OCD probably has a lot to do with it, but nevertheless my brain works in circles. She led me to the conclusion that I must, with purpose, step out of the circle.
So I stepped out of the circle. My art studio is clean and ready for me to create, but I haven’t stepped into the room. I went to the library and meandered, looking at authors I’ve never considered. I found an author, Mercedes Lackey — I can’t put her books down! I am reading like I used to read… walking around with a book while I do my daily chores, stopping only when I must and when my eyes become too fatigued to focus. I have a book by my bed so when I have insomnia or when pain becomes acute and I cannot sleep — I read. I am re-reading my library of art books and jewelry books.
Oh, and I also bought a pair of shoes for Fall/Winter! No one can ever have too many pairs of shoes!
So, I will step back into the circle soon, but I am not giving myself a time limit (although THAT goes against everything that is OCD in my brain!) I can feel myself becoming renewed again. I just was walking through the living room today and had an idea for rearranging/repurposing some of the furniture in the room. My brain has run in so many circles that I haven’t been able to solve the spatial problem of the current furniture arrangement!
My spirit will know when it is time to step back in… I will be renewed, refreshed and reinvigorated. I made a cup of tea this evening and will probably stay up WAY too late to finish my book.
Until it is time for me to step back into the circle, as Grammy used to say… “It will be otay.”
Most of you know that I’ve been working on Amanda’s Qipao since February. Originally, I hoped to get it finished in time for her wedding on March 24th, but the fabric was delivered five days before the wedding, which totally put the kibosh on that idea…
Okay, so Amanda and Hengyi are heading to China on August 16th for a wedding celebration/honeymoon. That’s easy!! I will just finish the Qipao by the end of July. Oh, the best- laid plans… I had a whole bunch of physical problems, (sorry for not thinking of a better word than “bunch” but I need a nap) — a trigeminal neuralgia setback, cellulitis at my copaxone injection sites, an MS exacerbation – many, many issues that just slammed my body. I worked on this garment in little increments, through pain, eye issues and fatigue, through three muslins and other fit issues. Amanda lives in NoVA so each time she’d come home, we’d fit the muslin As I was sewing, I made the choice to make a “skin” instead of lining the garment so it can be altered throughout Amanda’s life. Because of that decision, I had to actually “bind” all of the seams.
I changed the bodice, added a back zipper.
I taught myself how to weave the “frogs,” designed the “frogs” and then actually made them.
I made and discarded three muslins, finally fitted a muslin, sewed, ripped, hand-sewed, basted, pinned, ironed, tweeked, ripped, basted… you get the picture. All for a simple garment that will serve as a cultural bridge from my heart to Amanda’s new Chinese family — the Hu’s. I cannot even count the hours I spent patiently working this beautiful, very expensive silk.
Finally, yesterday, I finished! I didn’t take many “in progress” pictures because I didn’t have my blog in mind while I was sewing this beautiful dress. The Qipao is finished, except for the few inches of side seam directly under the sleeve. Amanda has to try it on for that seam to be completely fitted. She is coming the weekend of the 12th — nothing like cutting things close!! Here are a few pictures.
One final fitting, a few final seams and the final press (whew! That’s a lot of “finals!!”). I can’t even count the hours I have in this dress, not only sewing but those hours spent “thinking through” the next step, and the next… It is my gift to my precious daughter, who I love more than life itself <3. I will post pictures of Amanda and Hengyi when she wears this in China as they celebrate their wedding with Hengyi’s family.
I think I need a vacation