Last week I had the tremors, the worst day I was unable to hold the phone for long or drink my coffee, didn't even bother with the eye or lip liner that day. . . . I was meeting with the resident doctor who is doing her paper on my case and she really notices and made sure my doctor knew right away. They think it is from the medication changes or inter-cranial pressure so new changes were made. My next MRI isn’t until April. And my thyroid is on the back burner for now, I've grown tired of the biopsies and its still working. Im also pretty confident my skullbase tumor has not grown back.
The changes seemed to make the TN pain unbearable at times. My face is a mess of crushing, throbbing, searing, aching and burning sensations. Usual I can handle things much better than this but some days I am wiped. I really neeeeeeeeeeeeded a way to trick the nerves in my head with an alternate sensation to confuse them for a while. At least until my medication can work themselves out. I can’t walk around with a hot bean bag on my face wherever I go. A lidocaine nasal spray would be ideal but is not something my pharmacist had heard of. We opted to try a Benzydamine mouth rinse available by prescription for mouth pain. I know it is for “real” pain and not neuralgia but it did help a little, enough of a strange sensation to focus on it actually brought peace to burning, sinus and eye pain and throbbing temples. I don’t remember falling asleep that fast in a long time and I had a great sleep, in fact Laura is not here today, Brandon’s at College and no appointments so I’m going back to bed to get some much needed extra rest.
I have been able to maintain my weight and even put on a few pounds last week however I also had been having a lot of rib pain the last few months. Rubbing my side seemed to help and rotating my sleeping side helps too, anyway I guess I had been ignoring it for a while and my pain meds seem to mask a lot so I didn’t notice much change until this week. Maybe it’s more prominent with the weight loss but my doctor also agrees that things weren’t looking like this that she could remember. There appears to be a rather large mass protruding from my right side, and I mean large. Enchondroma probably or one that was there has grown. A little shocking and unexpected but explains some of the pain I have been having. And you know me and weight loss, my most feared symptom so I haven’t gone near a mirror in some time. Darn, so a bone scan request has gone in and we shall see what this is. It appears to start around rib 8 or 9 and my right but the old scans only show masses on 4 and 7 and other on the left, scapula and shoulder blade. Darn
Having a chronic health condition can make a person evaluate the important things in life. That kind of evaluation can really make a person strong in character and truly appreciate the good things. Don't focus on what you've lost. Try to focus on how your situation has shown you what those important things are: A family who loves you unconditionally and will stand by your side through thick and thin.
All we can do is continue to wake up each morning and tell ourselves that today is a new day. It might be worse than the last one - but what if it’s better
Today I pray for more strength and determination to keep doing what I feel is right for me and my family. I have the greatest kids who keep getting more awesome every day. I know I am blessed and not alone on this journey, thank you for your continued support and prayers.
"My face is a mess of crushing, searing, throbbing, and burning sensations." - Tracy
. . . .but, it could have been written by Stef today.
I am wondering what an Enchondroma is. I know that you had a skull based tumor, but I was unaware of these masses that you have, and the new one that is suspected.
Please know you are in my thoughts and prayers, that you (we) will be granted the strength and determination needed to stay as positive as possible.
I am also trying to see the glass as half full today. Some days, it is easier than others, and what if tomorrow is better?
I hope that the pain in your ribs? (is that where is is) is not as harsh as the pain in your face, which I know from personal experience lives up to it's bad reputation.
You brought up a lot of good points. The ability to be thankful for your blessings, rather than bitter due to your condition(s) will serve you well, I believe. I strive to be the same.
Hugs,
Stef
If we are like most people, we still have 1/2 of our lives to live w
Umm . . . ignore the sentence fragment at the end of my reply. I was going to tangent, but stayed on topic. I had meant to delete. I should take time to proof!!! I was in a hurry to say goodbye to my fiance who works the night shift.
This past year I received three diagnosis' out of nowhere and my life forever changed. I was perfectly healthy and fine not knowing I was born with a sporatic genetic condition called olliers or Enchondromatosis. Meaning multiple benign bone like lesions, very rare and some do become maligment hense the skull base chondrosarcoma. Like a walking time bomb but best not to look at it that way. I am being monitored for any changes which will be dealt with by a superb team of experts. This condition was only found because I had so much TN pain that may have been caused by the tumor in my skull but maybe not, the pain is only on the left and the tumor was on the right. After my surgery they had to tie off my hearing and now I have Tinnitus from the surgery and proton radiation treatment. I'm gonna beat it and have enjoyed your support and enthusiasm to help others better understand their condition. Thanks for the reply to my blog, I enjoy reading your posts and find them very informative and helpful.
I just wanted to write to you again to underscore the fact that we care and that you remain in our prayers. Please let us know how you are doing. I think of you often, because you are an inspiration, like Gloria said, (and sometimes whenever I eat whole avocados now) *giggles*! My Mom always tells me whenever the pain is really bad that "the mind is all powerful". I believe that this is true. Keep that positive energy rolling. I know it's probably tough, but stick with that determination and let us know how things are going, for better or worse, know that you have people who are thinking of and praying for you and your kids. I hope they know what a strong Mom they have.
I'm doing much better, probably will stay on the steroid 1 mg 2x day for a while or until my next MRI can tell us the fluid is gone or I'm feeling even better. The mouth rinse helps a little but only a little. I will ask on wednesday about the lidocane sinus spray and rinse. I was also wondering if any of you know what else can be done or tried when you are taking methadone? I take a low dose but it still works. 6mg 3x day so maybe I do have options for when the burning sensation is not fading enough. I can handle the other pains way better than the constant searing and burning. Remeber this may be a long term plan since I have ATN. I have no expectations except excellent healthcare and so far I feel I have had the best care possible and we are all learning due to the rarity of my situation.
Now I need to focus on picking up my electron cigarette and not the real ones . . . major relapse . . . stupid, stupid, stupid. Not like it helps my appitite or health in general in anyway but has been my crutch this last week. darn
I need to stay smart and gain some new skills.
Thank you for your support, it is so great that I can login to this site and read your post and stories and relate to your situation. Supporting each other is a great way to create more positive energy and help us heal faster from the stresses we face.