Saying hellow from FREEZNG -30 Canada tonight. I want to avoid the cold at all expense! I want to thank the moderators for inviting me through my blog at http://bluebirdyliving.blogspot.com . I have only known 2 people personally with TN, and its a very tough thing to live with when you feel alone and like an alien. This is WONDERFUL to find so many others who will understand each other’s trials and lifestyles! Did you know that Bing Crosby’s wife “Kathryn” has TN, and also Norma Zimmer from the Lawrence Welk show? Norma had the surgery, but I have not heard how she has been doing since that surgery many years ago. Feel free to visit my blog and leave messages there or to write to me. I have multiple other serious health problems in addition to TN, so I deal with life one hour at a time. I admire you all for the strength you have for carrying on with this disease. My Dr. has more than one patient who has killed themselves from this disease, so the very fact that you are still here, makes you a hero in my eyes.
Yesterday I went to the www.endthepain.org site and went to the store section and saw some awesome scarves to protect us from the cold and/or wind, so I looked at how one of them was made and I will make one for myself. It is very soft cloth so it won’t irritate the nerve, then has 5 pockets sewn into it to hold those little camping hand warmers in the pockets, to protect our face from the cold/wind. The other one looks like a space mask or scuba mask but is $100 and looks so foreign that it might scare people. I guess if you need it, you need it. I think I would cover that mask with a fabric that was less intimidating. I know that people with multiple chemical sensitivity must wear masks to protect themselves from scents, and people with low immunity need to wear surgical masks, so I guess it’s more common than I thought to wear a mask to take care of your health.
I have a really hard time learning how this website works and how to maneuver around in here, so be patient with me and my replies etc. I’m looking forward to getting to know you!
Blessings,
Sheila
You mentioned you are still learning how this web site works. You’ll get the hang of it. If you have any questions, just ask me. People here (like Maeve) are just the most amazing people. Glad you found the site.
Welcome Sheila,
A warm welcome from me as well. You have come to an amazing support group. You will make many a friend, gain knowledge…knowledge IS power…and find many a listening ear and virtual shoulder to cry on.
My best,
Judy
Maeve- Yes, getting a Dr. in Canada is a whole different dynamic. You don’t hire them based on whether you and them get along, you BEG them to take you and then have to put up with their abuse and neglect because you won’t be getting any other care. I’m also fighting a kidney stone and kidney infection that decided to hit me on the tail end of pneumonia/bronchitis and asthma, all courtesy of lupus, so I’m not a happy camper right now. The coughing and lack of sleep and infection all seem to affect the TN.
Ben-thanks for the welcome! You and Scott are the first guys I’ve personally talked to with facial pain or TN. You wrote me a note asking how I found you. Scott left a comment on my blog saying he was doing a search for TN and it led to my blog, so he invited me here. Just now I went back to find the comment. I THINK it was Scott, it mentioned something about being one of the founders.
Boodog, I am 7 hours south of you. Are you buried in snow like us this week? This is the wors snow I’ve seen in years. Nice to know someone who lives relatively close to me with TN, someone who has to deal with the dangerous Canadian medical system with TN.
Judy, sounds like you have a big heart, and that’s a great gift.
I just found a TN newsletter. Some of you might not receive it so I thought I’d lelt you know about it. It’s called TNA Alert but deals with all kinds of facial pain and comes from ■■■■■■■■■■■■■■■■■■■. Take care of yourselves all–because it seems like no one else can. Be good to yourself.
Blessings,
Sheila
Hello Shelia,
Well talking about cold and snow we are in for a huge storm today so I will defiantely be inside for days but thats ok cause the kids are now on break so I will have them to keep me company. I to can relate to the other mediacal conditions as I also have chest infection/bronchitis and asthma right now and lack of sleep and coughing that only irritates the TN. Here is hoping that we get healthy fast.
Talking about Dr…s , well I am very greatful to mine as he has taken care of me well. I had to go off work as I deal with huge amounts of money and on this medication I can’t function well at all. I just received word a few days ago that my insurance company has approved me for long term disability. This was very hard for me as I loved my job but due to reality, I just can’t do it. Hang in there and it is great to meet you…
Clemie, Congrats on the disability! It brings mixed feeelings to have to go on disability. I wanted to be independent and I love to accomplish things. My joy of living is to feel that sense of accomplishment. I was frustrated that I couldn’t earn a living or even get an income enough to live on my own, but when the time comes that you absolutely can’t function anymore, it is a blessing to have disability pension, instead of begging in the streets like many other countries. Having disabiilty turned out to be a blessing for me, because I could pursue things in my life that I thought God wanted me to do. I have had more than one NDE (near death experience), and I was told that I would not succeed in worldly matters, because that is not my calling in life. My calling is to lift and cheer others. I couldn’t figure that out, since I am no comedian and I am usually too sick to talk for very long or concentrate well enough to write a book etc., and often fight depression and discouragement, but God has even used all of those flaws to complete my calling. It turns out that people tell me that just the way I am, I have helped them somehow…so God knows our weaknesses, and uses them to create the best person person I was meant to be, if I just listen to Him. He uses our weaknesses to teach others. People who are struggling and stuck at home most of the time seem to develop greater spirituality, and are separated from the world. Like a blind person whose other senses become much stronger to make up for the lack of sight, our spirits seem to grow, and we seem to learn wisdom as we lean on our creator for strength and comfort. I don’t know if this website frowns upon saying anything about growing spiritually or not, so forgive me if I have broken any rules. I have been kicked out of groups before, because they didn’t want anything said about spirituality and letting your inner strengths grow, and becoming a greater person in spite of suffering. I was making so many mistakes on each job that I would embarass myself to death. My husband and I have our own business now but still I make mistakes that make my mad at myself, so my husband runs most of the business. Clemie, Sorry that you also have this bronchitis stuff. Its sure going around. When mine goes away, I still have 8 serious diseases to contend with…but we just do that one hour at a time. I got an early Christmas gift yesterday from my daughter. It was a long letter telling me every mistake I had ever made in my life, and that I have been faking all my life (how do you fake 18 surgeries and multiple infections and hair loss, etc.?) and it devastated me. Stress does not help lupus or other chronic illnesses. Oh well, such is life.
Blessings, Sheila
P.S. Just now I got an email from Switching Granny (Martha) talking about faith and quoting me a scripture. Perfect timing, since I just asked if we are allowed to mention anything spiritual in this group! I don’t know how people survive this kind of pain WITHOUT leaning on a power greater than themselves. Thank you Martha!
Well keep warm people! Inside and out!
Blessings,Sheila