Grandson a year old

February Journaling

1.  Our grandson is a year old today. They took him to Ripley’s Aquarium. I’ll post a picture.

2. Our daughter returned to work today part-time. Our grandson is adjusting well to home daycare.

3.  Very strange. Just as I was waking up, I remembered part of my dream. An angel was standing next to my bed. I somehow had the impression one was on the other side as well. He had a trumpet at his lips and was about to sound it when I awoke. Hmmm. Curious. Was I about to be called up higher? Last month I awoke to a feeling of a spirit hovering over me as I awoke in the night. For some reason it didn’t strike terror into me. I’ve never had visions or dreams like this. Is it related to my word of the year: Heaven? Time will tell.

4. Went to see my grandson today. We went out to the library so he could play.

5. So much abdominal and back pain and headache.

6.   Sleep is my only reprieve from my pain. When I wake up, it’s there. I wake up every time I turn over, since they are all three point turns. I took another three hour nap today.

7.  It’s sad when you look forward to a surgical consult. I just want relief.

8.  Showered and shaved my legs, and cleaned the bathroom.  I’m spent, but I still need to go out to run a few errands. I see the surgeon Thursday. I need to turn off my stoic Finn and let her know the pain I’m in daily. I really hope she does something soon, at least a CT scan so I can get some answers.

9.  I set my table on Tuesday for guests on Saturday. That’s my new normal.

10. Saw the surgeon. I will have my gallbladder removed in three weeks. Unfortunately she wouldn’t address the other issue, so now I need to go back to my family doctor and get another consult. So frustrating.

11. Shopping today. That’s all I can do.

12. Making the soup, salad stuff, and dessert in preparation for tomorrow.

13.Our dinner party went well, but after they left I was on the couch in pain.

14.Our grandson is coming over tonight.

15.Family day. My mom, sister, daughter’s family, other daughter and her friend had a lovely dinner of the trout my husband caught last fall.

16. I have such severe abdominal pain. I’m considering going to emerg. I need a CT. Very concerned about this heaviness.

17. Going to spend the day at my daughter’s so she can pack. They’re moving in a few weeks to a larger apartment.

18. I stayed over at my daughter’s because my night vision is worse with Fibro. Safety first.

19. Too many errands today. Then the men of our church hosted an event for Valentine’s Day for the women of the church. They sang Stand by Me and other songs, recited poetry, served us apps and cake, and used lame pick-up lines.

20. Lunch after church today. Excited to see the doctor tomorrow. Hopefully she’ll investigate this abdominal pain.

21. Discouraging. My pain was ignored again. I tried to stress that this was different from my fibro pain and my gallstone pain. I’m not looking for drugs, just answers. But instead, she’s passing me off to another specialist, whenever that will happen.

22. Saw my Naturopath today. She’s so helpful.

23.To the hospital for the pre-admit clinic. I’m bringing a mask to wear to see if it helps prevent a reaction. It’s kind of embarrassing to call attention to myself. People will think I have a cold and am wearing it to protect them, but I’m doing it to protect myself from the chemicals.

24. A useless day. Pain and exhaustion.

25. We went to see War Room at church tonight. I can handle it there, but I can’t go to movie theatres. But I had gallstone pain almost the whole time. It’s happening every day now.

26.  So excited. When I first called a Gastroenterologist’s office with my referral, they said they were taking appointments for September. When I told them about my pain, they fit me in for next Tuesday, along with a scope. So I have the prep Monday, that on Tuesday, visiting my grandson on Wednesday, and my surgery on Friday.

27.  My big accomplishment was cleaning the bathrooms, and then I took a two hour nap.

28.  Nap, flanked by church.

29.  Fasting for my test. This is when all you can think about is food. But I’m not as hungry as I’d expect. I napped most of the day away so I wouldn’t think about food.  

Happy New Year 2016!

 

January Journaling

1. Not quite a rousing start to the New Year. My husband was sick and slept till 2 p.m., my daughter undecorated the Christmas decorations for me, and I finished cleaning out a closet before I had a two hour nap. Yeah, always a party happening here!

2. I only read twenty five books last year. I fondly recall my year of seventy five books. Brain fog has made all the difference. Went for dinner at our brother-in-law’s house.

3. You know how people choose a word and it sets the course for the year? I don’t usually do that, but for some reason the word, Heaven keeps popping up. Should I be concerned? Does it mean I’ll be going there this year, or I just need to meditate on my future destination more?

4.  My mom came over for a few days and so far she’s cleaned out my spice cupboard and pantry. So nice. I’ll post a picture.

5.  Chiropractor appointment. She uses this laser which helps with some of my pain.

6.  Doctor’s appointment today, to get the results of my ultrasound. No super serious issues, but they need to repeat it because I may have gall stones.

7. They repeated my ultrasound today and apparently I have a few gallstones. I don’t know yet what the plan will be.

8.  Women’s ministry breakfast today.

9. Trying to read through the Bible in addition to the Bible studies I’m doing with the ladies. Busy week of appointments coming up.

10. More injections into my face, scalp and neck for pain control. It lasts ten weeks. They do about thirty injections. This time some of them hurt, but I keep thinking about the long term gain.

11.  Weird. For some reason I thought of my friend’s dad in Sault Ste. Marie. I hadn’t seen him for decades. Then we got a call that he died that day.

12. Naturopath appointment.

13. Three medical appointments today. One of them made me vomit. Yeah, not nice.

14.I went to babysit my grandson today so my daughter could get stuff done. Of course I had help, my mom came over with me. And I needed to nap two hours while there. But so nice to see him. He’s almost one year old.

15. So uncomfortable. Yet I don’t see my doctor for another week.

16. Really? First a parade, then a whole week, and now they’re planning a month. Ridiculous. Even people who died for our country only get one day of recognition.

17.Dental appointment today.

18. I cancelled my appointments for the rest of the week. I can’t.

19. My daughter and grandson came to stay over for two nights. I love having him here, but I need two hour naps each day.

20. Our little grandson loves animal noises, especially bumblebees buzzing.

21.I went to my doctor today. The plan is to get a surgical consult about my gallstones. Sigh.

22. I wonder how long it’ll be before I can get to see the surgeon. My gallstone pain happens almost daily.

23. Really exhausted. I nap all the time and climbing a flight of stairs is hard. I feel like I’m wearing a suit of armour. So discouraging since I had been improving recently.

24. Our grandson had his first birthday party today. He’ll be one in a week. He had sugar for the first time with his carrot cake and he was buzzing. He’s so cute.

25. I’ve accepted the leadership of the Women’s Ministry team at church for two years. I think I can manage it only because there is a team to help and also the retreat is planned by another group of women.

26.  I’m cancelling even my medical appointments. I just can’t.

27. I’ll be seeing the surgeon February 11^th. I hope I don’t get a gallstone attack before then.

28. Pajama day. Don’t show up at my door. You’ve been warned.

29. I have lots to do but I’m pinned to the couch in pain.

30.  I need to vent. I didn't realize how well my pain was controlled till it came back. Yep, I hate it just as much as before.

31.  Feeling disappointed and a little angry. CPP disability denied my claim. They seem to think my pain is completely gone and I can work. Yeah, right.

30 Things you may not know about my illness: ME/Chronic Fatigue Syndrome

1.       The illness I live with is Chronic Fatigue Syndrome. I have others but I’ll focus on this one.

2.       I was diagnosed with it at age 51.

3.       The other name for it is Myalgic Encephalomyelitis (ME), which means an inflammation of the brain and spinal cord, which is what it feels like. A newer name is SEID. Severe Exercise Intolerance Disease, which makes it more serious by calling it a disease, but the name doesn’t take into account the other symptoms.

4.       Since it is a syndrome, it has a cluster of symptoms. It’s much more than just fatigue.

5.       It’s an invisible illness, not an imaginary one.

6.       It came on quite suddenly in December.

7.       It is considered both an auto-immune and neurological disorder.

8.       It’s linked with my other problems: Fibromyalgia syndrome, Multiple Chemical Sensitivities (MCS) and Electro-magnetic Hypersensitivity (EMH).

9.       Because of the other illnesses the symptoms of pain, cognitive impairment (Fibro fog) and sleep issues are cumulative.

10.   The biggest adjustment I’ve had to make is to have to leave my job (Oncology nursing), which I love. I’m currently on long term disability.

11.   The hardest part of my day is deciding what my one task will be for the day. I can usually only do one thing; an appointment or a chore. The rest of the time spent on the couch.

12.   I feel useless. I used to be a productive member of society and church. I used to be able to do so much, like host dinner parties, etc.

13.   Before my LTD was approved, I felt worried about our finances and feared losing our house. I know it added to my husband’s stress as well.

14.   I can’t look after my grandson like I would have if I was well. My balance is so bad, I’m nervous to carry him, and won’t risk going up or down stairs with him.

15.   One gadget I’ve come to appreciate is my CES machine (Cranio-electro –stimulator). I can set it to sleep with energy, sleep or pain. My husband calls it space invaders.

16.   Unless you also have to rest for 20 minutes after climbing the stairs or taking a shower, your definition of fatigue is irrelevant.

17.   Three years ago I was taking one pill and two supplements, now I take 90 pills and supplements. Every. Day.

18.   If I had to choose between an invisible illness or a visible illness, I’d still choose invisible; only because I don’t like to call attention to myself.

19.   I wear comfy clothes now. My motto used to be fashion before comfort, now it’s comfort before fashion.

20.   Regarding alternative treatments, I’ve found they have been immensely helpful, specifically chiropractor, massage therapist, and Naturopath in relieving many of my symptoms. I have a good team around me.

21.   One of the worst symptoms is a feeling that my spine and brain are being whisked. When they vibrate, I can’t do anything until it passes.

22.   I’ve seen an Athletic Therapist who specializes in ME patients. She started me on an exercise program. My heart rate can’t go over 105 I can only do anaerobic exercise and strength training. It’s all about pacing so I don’t crash.

23.   An ME crash occurs if I’ve been “overdoing it”. For example, I generally can’t clean my house. But one day I had a big more energy and dared to vacuum one level, clean my bathroom and do a load of laundry. The next day I couldn’t do a thing, I spent it on the couch.

24.   I’m pleased to say that compared to a year ago, I have some significant improvements to my sleep, pain level and cognitive improvement. The exhaustion is not much better, and my MCS, EMH are unchanged.

25.   It’s been three years since my health deteriorated and one year since the ME hit and I can barely remember what I used to be like.

26.   I sometimes wish I had a disabled parking sticker because whenever I go to the train for a downtown appointment, I have to park at the far end of the parking lot, and it’s the equivalent of a two block walk to go to the train. It wears me out and adds to my ordeal.

27.   When I went to get my car licensed, I had to stand in line for 1 ½ hours! I may bring a cane with me into a similar situation in the future, so people won’t look at me funny if I grab a chair to rest.

28.   One of my doctors did a balance test before my treatment. I swayed with my eyes closed and couldn’t stand on my toes with my eyes closed for more than 2-3 seconds. It’ll be interesting to see a change after my treatments.  It’s caused by a swelling on the brain.

29.   Even if they can clear out my liver and improve my MCS and EMH, which would be great, they won’t be able to fix my ME or Fibro because they’re chronic.

30.   In spite of this, I’m glad it didn’t hit me until my children were grown. I’m also thankful to have such a supportive and understanding husband.

So. Many. Pills

October Journaling

1.   This was my day yesterday: up at 7 a.m., Bible study, breakfast, one load of laundry, load dishwasher, rest for an hour before lunch. Make lunch and eat it on the couch with feet up. Tried to read but vision blurry, rest for an hour, clean bathroom, (first time in two weeks), rest two hours. Help prep dinner, eat, then on couch for the rest of the evening, until midnight. Yeah, that’s about all I can manage on a good day. Today I have to shower AND take the GO train downtown for a medical appointment. Not likely going to manage all that and make dinner, too. Also, this is my fibro-fog. I went to pick up my daughter’s orthotics, paid for them, and left without them.

2.    Prepping for lunch tomorrow, when we have a guest over, then heading out to babysit our grandson overnight. I hope I can do it.

3.    We have a church history Professsor at our church today, Dr. Michael Haykin, who is speaking on four notable women in church history. We’re hosting him for lunch. Then heading out to Burlington to babysit.

4.    I slept poorly, but I was glad we went to church with our daughter’s family. Pastor Robbie Symons preached on homosexuality, which is a watershed issue today. He handled the issue with grace and yet very true to Scripture. Then our Pastor was continuing his series in 1 Samuel, which I love.

5.    I’m loving our Women’s Bible studies through the Pentateuch. We’re using Kay Arthur’s inductive Bible study method.

6.    I purchased a CES machine from the pain clinic. It is a cranio-electro-stimulator. You can set it for energy, pain relief, or sleep. You wear head phones, ear clips and goggles. Lights flash, it pulses on your ear, and you hear the sound of a pulse and buzzing. It feels strange but it works well. I usually do it when I have to rest anyway, like after climbing the stairs before my shower, or in mid-afternoon when my vision is too blurry to read and I need a nap, or in the evening before bed.

7.   My average accomplishment is to shower, run an errand, like go to the post office or drug store, and make some sort of dinner.

8.   Shopping for food for Thanksgiving dinner.

9.   I had an appointment with the Environmental Medicine Naturopathic Doctor. He’s starting me on many supplements and I have to go through my house and change so many things. How to find energy. My sister-in-law was kind and came over to help to cook the turkey, peel potatoes and set the table.

10.  We’re having our Thanksgiving dinner today. Only twelve this time, so we can all sit at the table instead of doing buffet.

11.  A good day at church. Our Pastor preached on fasting on Thanksgiving weekend. The irony wasn’t lost on him.

12. A relaxing Thanksgiving day at home. Also our daughter's third anniversary

13.  We had a Cope with Hope meeting tonight. It went well and I presented on Fibromyalgia and Pain, while another woman did a devotional on the purpose of suffering in our lives.

14.  My mom and I went to babysit my grandson today to help her out.

15.  Haircut and eyebrows done. Feel less grungy.

16. I had a treatment at the Naturopath today. I was a little nervous about it, but it seemed to help.

17. Going to visit friends and see a family we’re going to support on the mission field. I also baked some squares for church. Had to rest up in order to manage the evening. Evenings are my worst time.

18.Heading into a week of appointments every day. Tired just thinking about it.

119. Election day here in Canada. It didn’t turn out the way I’d hoped, but I’ll try to pray for our new Prime Minister so he doesn’t mess up the country too much.

20.Today I had to go downtown to another appointment at Women’s College Hospital for the three month follow-up at the Environmental Health Clinic. It was an ordeal as usual, since I had to walk so far from the parking lot to the train and  back and I got turned around and walked for a few extra blocks because of my being directionally challenged. All for just an update on what’s working for me and what’s not.

21. Another appointment, then trying to do a little cleaning today, and by a little I mean vacuuming upstairs.

22. Eye doctor appointment today. Need new glasses. My vision is rapidly deteriorating because of Fibromyalgia, especially my night vision. Then this evening we met with our realtor from our last two purchases. We discussed our options and may sell next year. This huge house is just too much space for the two of us, and I can’t even clean it anymore.

23. Another appointment this morning. I’ve got a year to purge and pack. I tried to clean out part of my walk-in closet. I dragged things out and sorted through them while seated. Even that was too much exertion. But I threw out a garbage bag full of stuff and sent two bins of paper to recycling. Purging feels good.

24.  So funny. As soon as we’re ready to let go of our home, our daughter calls to say they’re thinking of moving in with us after all, to save money for a house. Of course, it was a surprise, but we like the idea. It’d be great to see our grandson every day, but there’s no way I could look after him. If I was well enough I’d be back at work. My balance is so bad, especially on stairs. I don’t feel safe to carry him. So I guess we’ll be here another year or two longer than we planned.

25.My treatments from the Naturopath are helping, and I’m losing weight. I’m eating only organic food now, no preservatives or processed food, and I’m finding what foods cause reactions. Potatoes cause me pain, which is sad because I love them. Finns eat potatoes every day. A small family garden is even called a perunamaa or potato field because it’s a given that they’ll grow their own potatoes.

26.My appointment wiped me out. And of course, as I was leaving there, I was walking across the flat parking lot and suddenly twisted my ankle and nearly fell over. It takes a special kind of skill to be able to do that.

27.Women’s Bible study then grocery shopping. Had to rest two hours before I could put the food away and make supper.

28.Chiropractor appointment today.

29.  Another appointment. Busy few weeks. I set up my pills for the week. I’ll post a picture. I take 87 pills a day, most are supplements. I don’t know why I feel I have to prove how sick I am, but there it is. Got a form from the insurance company today, already asking for more medical forms to prove my illness, as if anything has changed in the past few months. I’m already booked for appointments every day for the next few weeks, now I have to find the time and energy to go there again. GRRR.

30. My mom is coming over for the weekend to bake her famous Finnish gingersnaps, and to help clean out a closet. My husband is on his annual fishing trip to Manitoulin and our daughter’s home from Law school for a week.

31. It’s Reformation Day! 488 years ago today, Martin Luther, then a Roman Catholic monk wrote 95 talking points to address some of the errors of Rome, that sparked the Protestant Reformation. After darkness, light!