Bad days, not so bad days

April Journaling

1.     I went for a two hour appointment with a doctor that Occupational Health set up. He was thorough and the aim is for me to return to work in some way, but I don’t think he understood what I could do, which isn’t much. Or that what I can do on Monday, I can’t necessarily do on a Thursday. That’s the nature of Fibromyalgia.

2.     So frustrated with paperwork. I am waiting on one piece of paper which my manager needs to get for me, but of course, it’s not here and now we’re heading into a long weekend. Also, we need to prepare to live on an income reduction of 30%. I made a new budget. Whether we can keep to it is another question.

3.     Good Friday. We have a breakfast at church before the Good Friday service. I had so much pain during the service. I don’t know what my triggers are. It could have been the pancakes. I’m trying to go gluten-free as much as possible. Who knows? I had a long nap, a hot tub, and then a nice fish dinner. Now watching The Imitation Game.

4.     I ran a few errands today, with our daughter. Did some laundry and baked two blueberry pies for Easter dinner tomorrow.

5.     We had my mother-in-law over for Easter dinner after church today. Then I had a three hour nap.

6.     We drove our daughter back to Kingston, ate lunch at a Korean restaurant, took her grocery shopping, and helped tidy up and address some plumbing issues in the house.

7.     Picking up a free walker from a lady at church whose mother died. My mom needs it for her knee replacement in June. Then buying a few yoga pants, my new go-to clothes. My motto used to be fashion before comfort, now it’s comfort before fashion.

8.     Finally got all the paperwork from my boss so I could send off the LTD forms. Heading into a big drop in income, so I redid our budget. I hope we can stick to it.

9.     Finally got a haircut and highlights today. I feel gross and desperate enough to brave the possible effects from the chemicals in the salon. My mom is coming with me in case I fall asleep there. I managed by taking a short break outside. I was in a smock with foil in my hair, but I am past the point of being embarrassed. A woman walked by and asked if I was the advertising.

10.  At WINGS today we made curried chicken, rice and peas, festival dumplings, salad, banana cake with brown butter icing, and buttermilk spice cake. It was very well received, but I was exhausted from it.

11.  Going to visit our grandson and then go to our daughter’s church to hear her sing. My mom is coming with us, so she’ll hear preaching for the first time in about two years.

12.  More pain during the past two weeks. Been overdoing it, and by overdoing it, I mean one appointment and a walk each day. And they think I can go back to work?

13. Sent in my LTD forms finally.

14. Going for a massage today. I hope they know how to deal with a Fibro body. I used to be able to handle hard massage, now everything is tender. Also we are starting up the Women’s walk and talk at our church tonight, and having a planning meeting for the Ladies’ retreat.

15.  Went for a massage yesterday and going to the chiropractor tomorrow. Will anything help this jaw pain?

16. Oh my goodness! I went to a chiropractor today and she helped relieve my jaw pain and my limp, on the first visit!

17.  We prepped lunch at WINGS, we did ham, scalloped potatoes, sautéed yellow zucchini, salad and Hawaiian marshmallow squares. Then I took a two hour nap, we had steak and salmon cooked on our new bbq, took a walk for an hour with my husband, then had a sauna, and crashed.

18.  We went out to the west end to pick up tons of baby furniture to be donated to WINGS by one of my husband’s co-workers. Beautiful, designer stuff. They’ll love it.

19.  We’ve been starting to walk daily. I am trying to build up my stamina. Heading into one of the busiest weeks, with two or three things to do each day.

20. Talked with the LTD people today, had a chiropractor appointment and a meeting for retreat planning. My LTD claim is still pending? Really? I pay into it for twenty years and they hesitate now?

21.  Women’s Bible study this morning, on John 11. Cope with Hope support group meeting tonight. Fewer people but more meaningful discussion as people are opening up more. I do this as much for myself as for others, even though it’s a lot of work.

22. Off to another sleep study tonight. I feel kind of silly because I have to bring my own blankets, sheets and pillow because of my MCS.

23.  There weren’t any significant chemicals yesterday so I was able to sleep. I caught myself unable to breathe a few times. I hope they caught it on the test. Going to the chiropractor today, and pre-cooking the pulled pork for tomorrow at WINGS.

24. Made lunch at WINGS; pulled pork sandwiches, coleslaw, and blueberry pie with ice cream. Then heading to Kingston to pack Leah up and bring her home. Her first year of Law school is done! Tired just thinking about it.

25.  We got my daughter’s things moved into a storage locker. I wasn’t much help, a bit of tidying up and minor packing.

26.  Church was very good today, such good preaching. We feel very much at home here.

27.  After last week, I’m happy to not have to go anywhere.

28.  Went to see my doctor today. She was more understanding today, although she still doesn’t understand that I can’t push myself any more than I’m already doing. She also doesn’t realize that Fibro affects every system in the body. But it was a helpful visit, nonetheless.

29.  Our daughter is getting her bags packed for her two month trip to England. She’s going to study international law and do a semester’s worth work in two months.

30.   It’s my birthday! Although it’s been my worst year, physically, it’s turning out to be a good one spiritually. Also, I got an ice cream machine as a gift, so guess what I’ll be serving for dessert at any dinner parties I host?

Windows of Heaven

We are heading into a season of lean finances due to my work situation. I am unable to work as a nurse because of my health. It causes me some anxiety, considering we are already living paycheck to paycheck, like most people. At the same time, I don’t think it was a coincidence that the Lord led me to these particular verses, which both challenged and comforted me. God is not surprised by our situation, and more than that, I know He is well able to supply our need.

As I made a new household budget with our reduced income, we had planned to decrease our offerings to church by a small amount. I’m sure our church budget would survive without it, and it was not an unreasonable budget item to decrease, and then I read this passage.

“Bring the full tithe into the storehouse,
that there may be food in my house.
And thereby put me to the test, says the LORD of hosts,
if I will not open the windows of heaven for you
and pour down for you a blessing until there is no more need.”
Malachi 3:10

It was a challenge from God. As if it was ever in doubt that He could provide, or was benevolent and kindly disposed towards His children. I talked to my husband about it and we decided to keep our offerings the same and watch how God provided.

The ironic thing is that for the past few years I’ve been prepping. You know, just in case. I have a full pantry. Well, this is our rainy day. We plan on working through the pantry. But now, with my new chemical and food sensitivities, I can’t eat anything with preservatives in them. So most of my pantry is unusable to me, so we’ll have to donate it instead. I don’t know why I find that kind of amusing. Isn’t it like God to take away all the things we were depending on, even if they are not bad things in themselves? I think it’s just to show Who or what we are really relying on.

Then we talked about wedding vows. You know, “for better or worse, for richer, for poorer, in sickness and in health, till death do us part.” We always joked that we’ve done them all. There were times our marriage has been very good, times when it’s been a struggle, we’ve had times where money was abundant (or at least, we spent as if it was,) and our early years of barely covering our costs. My husband had cancer 16 years ago, and I’m ill now, but we’ve been in good health otherwise. So, to head into the sickness and poorer stages at once, and again, makes me think there are still some lessons to be learned.

So I hope we learn them. I love this passage in Proverbs.

“Two things I ask of You;

deny them not to me before I die:

Removed far from me falsehood and lying;

give me neither poverty nor riches;

feed me with food that is needful for me,

lest I be full and deny You and say, ‘Who is the LORD?’

or lest III be poor and steal

and profane the name of my God.”

Proverbs 30:7-19

This short portion in Luke makes me think that it’s not so much about how much we give, as our attitude about giving. Do we really recognize that everything already belongs to God and we are to be stewards of it, and give back to Him as a sign of our gratitude to Him for all He has done for us? I know we’re not as poor as this widow, but I pray we have a better attitude about giving, and not just look on it as if we are doing God a favour. I’m afraid that may have been my attitude at one point.

“Jesus looked up and saw the rich putting their gifts into the offering box,

and He saw a poor widow put in two small copper coins.

And He said, ‘Truly, I tell you, this poor widow has put in more than all of them.

For they all contributed out of their abundance,

but she out of her poverty put in all she had to live on.”

Luke 21:1-4

Finally, I hope that our attitude will be good, ‘even if’ things don’t go wonderfully well.

“Though the fig tree should not blossom,

nor fruit be on the vines,

the produce of the olive fail

and the fields yield no food,

the flock be cut off from the fold

and there be no herd in the stalls,

yet I will rejoice in the LORD:

I will take joy in the God of my salvation.”

Habakkuk 3:17,18

I’ll keep you updated on how it’s going.

Cope With Hope

March Jounaling

1.We had a luncheon after church today. I brought leftover food from the baby shower yesterday, because I didn’t have the energy to cook anything new. It was nice to get to know a young couple at church. We’re really enjoying the preaching here.

2.My husband was off sick today. I was doing the Bible study assignments for the Women’s Bible Study tomorrow. We’re going through the book of John.

3.Women’s Bible Study and then home again to rest.

4.I have an appointment with yet another specialist. The focus will be my sleep issues, as he has experience with patients with Chronic Fatigue Syndrome and Fibromyalgia. The good news is they warned me the appointment will last 1-2 hours. That might not sound like good news, but to me it means he will hear me.

5.So the specialist yesterday was very helpful and seemed to really care. He did regular allergy testing, which told me I was allergic to dust, mold and trees. So I guess duct cleaning is in our future. Also he found a few other problems and will be addressing them. I may also have another sleep study, even though you’re only allowed one per lifetime. We have to get special permission from the government. He will also send me to two other specialists. He was surprised I didn’t have a doctor who is addressing my Fibromyalgia specifically, so he will try to find one for me. So nice to have that kind of attention to my problems for a change. Also planning my menu for WINGS on Friday. I’m so thankful the ladies from church come to help me and my mom. I don’t mind planning and directing, but the implementation of it is difficult and stressful for me.

6. I went to WINGS today. I don’t handle stress very well. But I’m always happy when the food turns out and gets to the table on time. We made spaghetti with meat sauce, garlic bread, chicken Caesar salad boats and brownies. It was good. A few of the ladies prayed over me. They’re Pentecostals so they see illness as from the devil and were casting it out and claiming healing for me. Not quite sure what to make of it. I believe God can heal, but is that what’s best for me? Not sure. And with a chronic illness, or a few like I have is that even reasonable? Would you pray for diabetes or arthritis to be healed? I think there are some things that can only be learned in the crucible of suffering.

7. I’m so excited! I will be working with an editor from California who I’ve heard about before. I sent out the first five pages in a contest called Promising Beginnings. Although I didn’t win, she said she’d be interested in working with me to improve my manuscript. Yay! So I chose her even though it may have been easier to have a Canadian editor nearby.

8. After church we drove out to Burlington to babysit Benny while our daughter and son-in-law went to a funeral. Any excuse to see him. He’s so sweet. He’s much more settled. He even smiled for me. I’ll post the picture.

9. A rare good day. I signed up with the editor, sent a devotional for possible publication (paid, even), and updated an article I’d like to send for publication.

10. I was having a leisurely breakfast and then realized it was Tuesday morning and the Women’s Bible study was starting at 9:30. I don’t do well with rushing, but I made it there five minutes late, albeit with unwashed hair I pulled into a ponytail. I was glad I made it. It’s always a blessing. But that’s about the end of my productivity for today.

11. Benny rolled over! He’s not even six weeks old. Although it’s probably a fluke more than a repeatable feat at this age, it is young for that. It usually happens anytime between 2-6 months. He apparently surprised himself, even.

12. I think Chronic Fatigue Syndrome is too mild a word to describe how exhausted I feel. If you have to rest after walking up the stairs, or after a shower, and if going to the grocery store or doctor’s office is enough to make you stay in bed all the next day, then you’re a little closer to knowing how it feels.

13. My big accomplishment for the week was getting ready to have friends over to eat one of the giant trout my husband caught in November. I say week because I had to do one small task per day, like cleaning a bathroom, etc. till we were ready. But I couldn’t go in the hot tub. I already had a shower today, and with the prep for dinner, I’m done. As relaxing as a hot tub might sound, it takes a lot out of me, and a second shower in the same day is too much. I have no energy reserves to draw from.

14. Yep, I should’ve known that yesterday would wear me out. It was nice to have friends over, and I’m glad to make the effort for them and for my husband’s sake, so he can feel that life is somewhat normal, but today was a rest day. My husband did our taxes and I did two loads of laundry. No dinner, just leftovers. It is what it is.

15. Church today, always good. Rest in the afternoon. I miss Benny, our grandson, but it’s hard for me to go there, especially to stay overnight. My health care routine is getting more and more complicated. Our daughter was going to come here for a few nights with him, but he’s just getting adjusted to sleeping in his crib. My mom and I may go there just for a short day visit so she can get some errands run. We get pictures sent almost daily of Benny and he’s growing so fast, smiling and more settled. He is getting more control of his arms and more awareness of his environment.

16. I’m going to a Reflexology appointment today, not so much because I think rubbing my feet can help with pain in my body, but more for a good foot massage because I have very painful feet.

17. It’s St. Patrick’s Day today. I think most people forget he was a missionary to the very people to whom he was enslaved. I’m not one for beer, green or otherwise. So today is just another day for me. I made a curried chicken dinner for a family in our church. She was hit by a car and needs help. It’s a less-bad day for me so it’s good to do something for someone else for a change.

18. I am slowly working on the plans for the first few meetings of Cope with Hope. We have the location and dates for the year set, I have a graphic designer working on a logo, I have a devotional written, a plan to cover the stages of chronic illness for discussion, and someone who will share about their illness. I will also have food, an icebreaker, prayer time, and one song. I’ve been getting the word out, hopefully it will be more than two of us talking to each other…

19. I have an appointment with the Naturopath today for another vitamin injection and to get the results of some tests that were done.

20. Starting to get an idea of how much of a hit we’re going to take financially by me not working. We’re definitely not in this for the money.

21. Time to start eating food from our “zombie stash” as my daughter calls it. We are heading into our rainy day.

22. The highlight of my week. Such good preaching.

23. Working on forms for Long Term Disability. So discouraging, as I remember from before that I have to run around to so many different departments to get the info, and I don’t have the energy to run around.

24. I went to my doctor to get her to fill out her section of my LTD forms. I feel discouraged by her attitude. She says my fibromyalgia isn’t a reason for disability. I said, but I have multiple chemical sensitivities, she says, that’s how you feel, but you can’t prove it. Argh! You can’t prove headaches either, but they’re still real. I also have Chronic fatigue syndrome and anxiety. Either one of those in themselves are reasons I can’t work.

25. I took a trip downtown today to get forms filled out at the hospital. Also emptied out my locker. Feel kind of sad about that. I don’t know if I’ll ever be able to go back…

26. Guess who’s coming for a sleepover? My husband will babysit while my daughter and I go to see Cinderella.

27. I watched Benny for two hours this morning so my daughter could sleep. Then we made lunch at WINGS. We made Shepherd’s Pie and Southwestern Chopped Salad, which was quite delish. We also had an apple cake. It was my mom’s 75^th birthday so we sang her happy birthday. Imagine, making her work on her birthday! Then I went to my doctor’s office to pick up paperwork and to get a Shingles vaccination. With all my health problems, that’s the last thing I need.

28. A quiet day at home, then a dinner party at a friend’s house. Always nice when someone else does the cooking.

29. Church, nap, church. Always a good Sunday.

30. Finishing up the prep for our first Cope with Hope meeting tomorrow night. I am expecting at least 8 people.

31. Women’s Bible study, then a dentist’s appointment then setting up for tonight’s meeting. I’m glad I had a lot of help with it, and at least a month to slowly prepare. It went well, there were nine of us.