Thursday, April 2, 2015

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 75th 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.

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