Monday, November 30, 2015

Re-root Canal

November Journaling

1.    It’s strange to be at church without my husband. He’s still fishing. My mom is here this weekend helping to clean out closets because I have no energy. She also baked her famous ginger snaps while I mostly watched.

2.   Back at the pain clinic for the injections to my face, neck and back. I must admit, the one into my temple is the most disturbing, but it keeps the pain away in my head and neck for ten weeks, so no complaints.

3.   Women’s Bible study. We’re still in Genesis, talking about Jacob’s ladder and wrestling with God.

4.   Back to the dentist today to remove the last mercury fillings out of my mouth and fixing a cracked filling. It’s a lot in one day, but then it’s done.

5.   Going downtown to an appointment with a special physiotherapist who works with people who have Fibromyalgia and ME/CFS. Talk about moving slowly; my heart rate can’t go over 105, only anaerobic exercise, only for two minutes, then rest for six minutes, and pace myself.

6.   Another treatment at the Naturopath. Finding it helpful, but it’s hurting my bank account.

7.   My mom came over to purge closets and bake cookies. I’m supervising. Also, my husband is on a retreat for the men from church. It’s in Niagara Falls.

8.   Church and nap. Filling out forms for insurance company and notes for all the things I need to ask the doctor tomorrow.

9.   Doctor’s appointment today.

10.  Bible study in the morning and Cope with Hope in the evening. One of our best ones; I think we’re getting more comfortable with each other. We learned about PTSD, exercise and the Bible study was More Precious than Gold. We’re going to wrap it up; it’s run its course, so the December meeting will be a Christmas get together.

11. Remembrance Day. Our grandson is coming over for three nights.

12. Another specialist. Some improvement. Suggested a $400 test.

13.  Yet another specialist. More improvement. Also ordered more supplements and treatments. I can’t afford all this. I spend at least $1000 out of pocket each month after OHIP and my husband’s insurance. I want to get better but honestly…

14. Horrible events in Paris yesterday. What wickedness in our world!

15.  We had lunch at the home of a couple from church. Nice, but too exhausting for me.

16.  Naturopath appointment today. She commented that I have a good team around me, and she’s right. I guess there has been some benefit from having 3-5 medical appointments per week.

17.  Bible study this morning. We just finished Genesis. I love that book. I wish we could have gone through it a little more in-depth.

18.  Another treatment. I hate not having the energy to even clean my house. My poor husband has had to take on so much, and he’s got a lot of stress already with his job. The most I can manage is an appointment and supper or a load of laundry.

19.  Had to trek downtown, which I hate, to go to a dental specialist to re-do my root canal. My tooth has been hurting for months, and it’s my one constant daily pain, in spite of my pain medications and nerve blocks.

20. Our grandson is staying overnight while my daughter and her husband get away. Now I see why people have children when they’re young and healthy.

21. My editor is sending chapters back for me to revise, but my brain isn’t working too well. Fibro fog.

22. Treatment.

23.  Bible study, beginning the book of Exodus.

24. Chiropractor appointment.

25. Double treatment today. Also, my root canal has healed and doesn’t hurt. Now I just need to get the temporary filling replaced with a permanent one next week.

26.  Our eldest is 25 today. She’s such a beautiful, sweet and intelligent woman. She also chose a wonderful husband and gave us our grandson.

27.  Rest day. I wish I had more of these. So tired.

28.   Women’s Ministry meeting today and dinner at a friends’ tonight. I hope I’m okay. Last time the lights and noise overwhelmed me and I had to hide away in a dark room for a while.

29.  Our youngest heard she will be working as an intern overseas next summer. It’s at the ICTY (International Criminal Tribunal for the former Yugoslavia) which is a criminal court. It’s in the field she wants to work in. We’re so proud of her.

30.  Treatment appointment today. Our Finnish side of the family is meeting in London next weekend. I love to see my family, but I find social events too taxing on me. But I’ll be happy to see our grandson again.

Friday, November 27, 2015

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.

Wednesday, November 4, 2015

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!