Saturday, August 1, 2015

Slow Improvement

July Journaling

1. It’s Canada Day. The one day we wave our flags, then put them away for another year. We’re going to my mother-in-law’s for a BBQ. I have to pretend to be fine for six hours.

2.  I went to the dentist today. I’ve read of a link between Fibro and root canals, because they leave the dead root in you which can be an ongoing source of infection. I had mine last August and my Fibro worsened significantly in September. I also have a toothache in that spot and my TMJ pain is worse on that side. Plus I have headaches and neck stiffness. When I mentioned it, he waved me off, and said, “Old wives’ tales.” GRRRR. At least he’s referring me to another dentist in two weeks who may remove it, which would be fine with me. So tired of this stuff. I want my health back.

3.   I went for an X-ray of my TMJ; temperomandibular joint (jaw area near the ear) in preparation for my pain clinic appointments. Yes, I have two different appointments to deal with this. If only someone can help me. I’m in pain every day, even now when it’s not raining. In other news, our daughter returns from England today. I’ll post a picture of her saying goodbye to the castle she studied in. It’s been a great experience for her and she also earned a certificate in International Law.

4.  My mom is moving out of the in-law suite after fifteen years with us. She will move out slowly over the next two months, but she will only be taking her bedroom and bathroom stuff with her, since my sister has everything else they need.

5.   I went to my doctor today, and waited an hour and a half, which is usual. Kind of frustrated with her. She tells me what I shouldn't take for pain, but not what I should do.

6.  I went to a pain clinic today. They focus on non-narcotic solutions. It was helpful in many ways but strange because he gave me a nerve block with 10 needles in my face, head, neck and back. Then my head felt heavy and puffy like after the dentist. He also used a special machine on my head which was interesting.

7.  It’s a toss-up between which one I hate more; the pain of fibromyalgia or the severe exhaustion of Chronic Fatigue Syndrome/ME.

8.  Praying for energy to prepare for a dinner party we're hosting Sat. It took weeks to prepare and I don't want to crash/flare the day of. I used to take these things for granted, but now everything takes such effort and the slightest thing can be "overdoing" it. Why are we still doing hosting a dinner party, even with Fibro/CFS? Because I want to have something from my old life. Also, for my husband’s sake, because he’s had almost as many losses as I’ve had. Thankfully, our daughter and my mother are helping me prepare. I also took weeks to prepare what I could I advance.

9. I started on a supplement for energy and it’s really making a difference. After an extremely bad month for fatigue, to have even a little bit of energy is so exciting.

10. I’ve got a lot of help with prepping and it’s coming along.

11.  Our dinner party went well. I made it almost through the whole thing. Around coffee time, I had to excuse myself to lie down for a while. Our Welcome to the Tropics! menu was Starters: Nachos with homemade mango salsa, homemade guacamole and salsa. Appetizer: lime, garlic and cilantro jumbo shrimp and scallops in butter wine sauce. Soup: Spinach and okra soup. Salad: Southwestern chopped salad. Main: Jerked kingfish steaks, Hawaiian pork and pineapple skewers, Jerked chicken wings, rice and beans, vegetable medley. Dessert: homemade ice cream: toasted coconut, mango sorbet and chocolate banana ice cream. Drinks: pina colada punch, red and white wine sangria, beer and wine. That’s it for the year. Too ambitious a menu, probably, but it was nice to see friends.

12. After church today we had Summerlicious, which is just a dinner at another member’s home. You sign up as a guest or a host, and the day of the event, they match you up. Since we were hosts yesterday, we were guests today, and brought a dessert our daughter made. It was nice to get to know some people. But then I had to get home to rest.

13.I went for massage therapy this morning. This time it actually worked well.

14.I went for a CPAP trial last night at the sleep clinic. I’ll probably be getting one. They tried me with the nasal mask. They also put a sling on my chin to keep my mouth closed. I felt a little suffocated, but by morning I felt more rested. Apparently I had more REM sleep. That’s a nice change.

15. Chiropractor and doctor’s appointment today. It’s a busy week for appointments. My doctor is more understanding of my illnesses. I think she realizes I can’t work as I am right now.

16. A day in my life: Average person: Goes to a 30 minute dental consultation and carries on. Me: I went downtown by GO train. On the way there I realized I left my phone at home. Then there was no leg room on the train, and it’s hard for me to keep my legs at a 90 degree position or more. Also, at that time of day, everyone’s perfume is fresh and strong. Then when I got to Union Station I couldn’t remember which King St. subway stop it was at. I chose the wrong one. Then I got disoriented and started walking the wrong way. When I reached my alma mater I looked up and saw the sun. The sun rises in the east. Dang! So I grabbed a taxi and got there on time, albeit $10 poorer and more than tired from the walking. At the office, I was overwhelmed by the noise and light, so I popped in some ear plugs. After I got in to see him, the hygienist was accommodating and turned off the radio in the room and turned down the lights. Once he came in, he offered sunglasses for me. I told them I appreciated their accommodations. Of course, every appointment I go to leads to more tests and appointments, so I left without any help for my toothache yet. After all that overstimulation, I just caught the next train back home.

17. Another appointment at the pain clinic. This time the side effects weren’t so bad, and the pain control is so much better. Also, I’m getting much better sleep this week, which is a blessing in itself. My husband noticed that I was sleeping in a more restful position. I am also sleeping longer and deeper. I’m so excited to sleep! That’s because of a special medication he started me on. It increases my endorphins, which most people get from a good nights’ sleep, which I haven’t gotten for at least a year, or from exercise, which is hard for me to do. It should also help me to lose weight. I’ve gained FORTY pounds in two years! And if the pain gets better controlled, I may be able to decrease one of my medications which causes my weight gain. That would make me happy.

18.Today was a full day. I started by going to church to a Festival they were putting on. I sold one of my blankets and some baked goods, but left after two hours because we had free tickets to a TFC game. We met friends going down there too so they sat with us on the train. It’s was nice to chat with them, but I wasn’t able to straighten my legs so I started to feel them. Then when we got to the stadium, we found out the hard way our seats were up six flights of stairs. If I would have known, I would have found an elevator but instead I rested part way up. Then we were in direct sunlight in 30 degree weather for 90 minutes. At least I was wearing sunscreen, sunglasses and a hat, and I don’t usually wear hats. By the time it was over, I was done. But at least they won. Every other game I’ve attended ended in a tie or a loss. So it was nice in that respect, and to see the finesse of a player like Giovinco. However, they gave up a goal at 90 minutes, which is, sad to say, typical for our team. A week ago, I wouldn’t have even considered a day like today. But the new supplement for energy is working so I can manage more than a shower or appointment or grocery shopping in one day, and the pain treatments are working for the pain from the neck up, at least. So thankful for small steps.

19.Today after church we went to visit our grandson, who we haven’t seen in a few weeks. He’s so sweet. Then we tried to walk in the neighbourhood but it was too hot. My husband’s on vacation for two weeks, but because I’m not well, and not working, we’ll do a cheap staycation.

20. I'm so excited! I'm getting in to the Environmental Health Clinic at Women's College Hospital tomorrow because of a cancellation. The wait is usually 13 months, but I think I'm at the six month mark right now. Finally, a place where they "get" me’.

21. Wow! I just had the most thorough four hour medical appointment/exam. The most validation I've ever had about my illnesses. They even have posters around about MCS and EMH. Then I went for blood work and trekked home.

22. After a great appointment with the Enviro Health clinic and pain relief from the pain clinic I'm so discouraged by news from the insurance company. How can they deny my claim when my work has no place for me with my limitations? I’m so frustrated and sad. Once I get the report from the Enviro clinic, I’ll appeal.

23. While I lay here with my spine throbbing I wonder what this will mean for our future in this house. Jehovah jireh. In other news, I’m so happy with the help I’ve received from the pain clinic, at least for the pain from the neck up.

24.Relaxing day at the beach trying to forget my troubles for a while.

25. Going to the doctor today to get the ball rolling with an appeal. Then to a friend’s house for dinner.

26. It’s our 29th anniversary. Definitely testing the wedding vows, going through “poorer” and “sickness” again. Going out for dinner with money we set aside months ago.

27. Going to another pain clinic to address the pain below my neck. Again, a pre-appointment for another later appointment.

28. For mammo today to address other concerns I haven’t had time to address. Then a beach day to forget my health woes and enjoy my husband’s time off work.

29. To Stratford to see Hamlet. It was okay, but next time I’ll try to get disabled seating so I can stretch out my legs because I was very uncomfortable.

30. Went to visit friends tonight. Another example of someone who says, “You’ve been able to sit here all evening.” Sigh. I think, but don’t say, “That’s why they call it an invisible illness. I pretend to be well, even though I’m in pain and exhausted all the time.” I make the effort for my husband’s sake. He’s an extravert and enjoys interacting with people, plus he’s on vacation. So I push myself beyond my limits for him.

31.  More needles in my forehead, temple, scalp, neck and back for pain control by nerve block. It’s a little distressing while it’s happening, but it does make a difference, at least for the pain above my head, so I’m thankful. Then we had a couple over for dinner. He was our best man so we’ve known them many decades. Again, I was spent, but I pushed through for my husband’s sake. After almost one appointment per day this month, I can honestly say I'm not sad to see this month end.