posted
Hi Team, I got diagnosed in Sept., given various oral anbx, on IV rocephin since Dec. now mixed with some orals and just started a major 24 hr acting pain med to attempt to be able function in my life. The pain has been unbearable.
I live alone on a mountain with 2 fabulous dogs!! They have no thumbs.
My ex had my insurance cancelled and no one bothered to tell me until a friend was calling the ins.co on my benefit because I am suffering from lyme-brain-fry and they told her. SURPRISE!!!!!!!!!
My lawyer is, of course, out of the country and I had to figure out what to do. I did well ( applause-applause) and my pharmacy knows me well enogh to put all the meds on a charge until it is fixed.
Because of you wonderful people on this site I found a company to mix the drug for a great price and I am on my way.
However... I am fried and lonely and depressed. My family cannot get beyond their own noses (not new behavior) and my friends all have lives of their own and are as supportive as they can possibly be given time constraints etc. Bless them every one.
I read the post about the sad story and I get how someone can make that choice. I am not going to do that but I FEEL like this is too hard to move through.
I have all my support things in place I am a good patient\ feedback taker. Do what I am supposed to do blah blah blah. I still feel so lonely my bones hurt.
Thanks for letting me spew.
I send you all the healing energy of your choice and light.
You may live alone on a mountain, but you are far from alone. I know it's old news, but we might as well be up on that mountain with you.
I'm sorry about your insurance--it can be a cruel world but you will find an alternative, as it seems you have underway and I'm happy to hear it!
Give those dogs a big ol' kiss for me, and vent on! Keep in sight how your life might be someday when you can climb the mountains around you and know that it's possible, and worth the good fight.
Sara
Posts: 160 | From Frederick, Maryland | Registered: Nov 2004
| IP: Logged |
posted
sarabear, I will give the "boys" a kiss for you. Venting helps so much. Thanks for responding! Blessings, Marblenose
Posts: 287 | Registered: Nov 2004
| IP: Logged |
posted
Dear Marblenose, (that sounds so funny, you gotta tell me how you chose that name)
Well anyway, I'm sorry you're going through a rough time right now. Last month I was in a place that you are now. (Herxing always makes me feel melancholy and crazy) And it's so scary because I also see how someone could end it all. I was going though a period where I truly believed what I had dreamed the night before, and was afraid that one morning my mind would believe that it would be better to die.
I don't have your insurance problems (well not yet anyway), but I too feel lonely...and I'm married. The fact that nobody knows the pain we are going through, my husband does try to help, but he really doesn't make a difference. Sorry for the babble, severe lyme brain this morning.
What I'm trying to say is that only you can make you better emotionally. Allow yourself some pitty time, and them come back swinging. A lot of times I find new meanings to songs that I've been listening to for years. This week it's a BonJovi song. Don't know the name but the inspiring line is ``It's my life, It's now or never, I ain't gonna live forever, I just want to live while I'm alive''. This has become my fight song for the week, while I try to focus on my insurance appeal.
Some inspiring lines are:
Don't focus on what you can't do, focus on what you can do. .. and become creative.
Use your doctor as a punching bag. My doc says he wants to hand me boxing gloves when I come in. I can bitch to him about everything, and I don't feel like I'm whining, and If I am whining, too bad, I'm paying him to listen!! This limits any whining to friends. I look forward to my monthly visits to him, I always leave feeling grounded. Also, antidepressants help, are you on any?
I hope I haven't offended you by over simplifying things. It must be rough being alone. Use the board here, or your state lyme support group, maybe you can hook up with someone near you.
Take care, turn up the music, and fight back.
Posts: 55 | From Maine | Registered: Jan 2005
| IP: Logged |
posted
LYMEin ME, Thanks for all your kindness and wisdom. It's just a realy rough day and I will get through it like I have for the past 10 years slowly but surely. You could not possibly offend me with your feedback. Not to worry. Bleesings, Marblenose!
Posts: 287 | Registered: Nov 2004
| IP: Logged |
posted
Marlenose - I live alone with my foxhound Charlie. She's just over a year, full of energy and mischief and when I get low and start thinking dark don't-wanna-go-on thoughts, I rub Charlie's tummy...something soothing about this for both of us. I so understand how you feel - I could have written the post you wrote for both of us. And I really relate to feeling so alone your bones hurt. I forget what it feels like to be held in someone's arms. Blessings...I'm on the mountain with ya. Let's pour ourselves a cup of tea and hug our doggies... Jane Posts: 23 | From Peterborough, Ontario, Canada | Registered: Nov 2004
| IP: Logged |
posted
Hey marble! I hear ya loud and clear. Life without Lyme is tough enough....but add keets to the mix and you've got more than you can handle sometimes.
I hope you find an answer to your pain, both mental and physical. I've got the answer for the physical. For the mental, keep a gratitude journal daily.
Write down at least two things you are grateful for each day. It can be simple little things or big things. Sometimes all we can find are the little things!
Here are some roses for you. I keep them for special people and special occasions. Funny how they always appear to be fresh and beautiful!
posted
Thanks for the replies and the gorgeous roses! I do a gratitude journal with 5 things everyday. Sometimes it's that I had a good cup of tea and could bathe without having to take a nap afterwards!!!!!! Always it's that I have the "boys" who are smart and funny and full of love to keep me real. Blessings to all, Marblenose
Posts: 287 | Registered: Nov 2004
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hang in there Marblenose. E-mailing forum members might be a good diversion. My son is going through what you are right now. We did the Duragesic patches [50mg], and percocet every four hours for the spiking pain. It's much more manageable now, but his fatigue came back. He said he'd take the fatigue over the pain any day of the week.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
posted
I have been taKing 2 hour naps since starting the new pain med! Very unusual. I will take the sleepiness over the pain. I imagine this will pass in time. Blessings, Marblenose
Posts: 287 | Registered: Nov 2004
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hey Marblenose!
What can I say to possibly make you feel a bit better?
You're in such a crappy place right now... Hmmmmm... I can recall the months and months of crushing head and neck pain and times when I thought my head was going to explode. Trigger point injections of Lidocaine were the only thing that got me through it...
And I thought I'd never get through it at all.
And now I've been off abx for 3 months.
Ok things to be thankful for... you have two wonderful live-in friends who'll NEVER tell you
'But gee, you don't look sick' and who will always love you unconditionally no matter what. It's amazing how good you feel when you get a cuddle or a kiss from someone who loves you no matter what.. even when you can't get out of bed to let them out or feed them. You're still you and for that they love you.
It was usually my 2 dogs that helped snap me out of my pity parties (and there were many when I had Bart.)
You have us, your 24/7 circle of friends who've been through what you're going through.
And um, remember that you've got bugs in your brain and taking some whopper antibiotics... and maybe altering your perception a bit. Making a tough situation seem totally insurmountable. It's just the bugs. You're still in there somewhere.
I hope you get through this tough day with your two compadres, and pray your ex gets hit with a lightning bolt - shame on him!!!
------------------ Julie G. ___________ lymeinhell
Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
posted
Hi Marblenose, Sorry you are having a tough time. I would like to chime in with the others and say Lymenet is here 24/7 so you are not alone.
Are you able to get outside? It is a pretty decent day and although I have to force myself sometimes I always feel better after. Just even to sit for 15-20 minutes.
And give yourself a break. Sometimes we know we should be doing certain things to help ourselves, but we get stuck. Give yourself credit for knowing you are stuck and have reached out! For me that is the hardest thing to do-to reach out.
I have two dogs also, beagles. My one dog I have had for 8 years, got her from the shelter when she was two. she probably has saved my life a few times!Tell your boys my girls said howl-lo! Peace, Grace
posted
To hopeful123 and Grace24, I got some jar Korma sauce that had only good stuff in it and sauted some onions and chicken, then made a package of pesto/ginger rice roasted some asparagus and thought I went to heaven. B4 Lyme I used to spend all day preparing indian food and this was really super. What a gift on a low day! I will send the best from the beagle girls to my gorgeous Labs. One is 8 and the other is 4. They are quite a team. It was glorious outside today and my friend came and took me to the grocery store!!! Whopee!!!!! Do I know how to have a good time or what!?! Blessings. Marblenose
Posts: 287 | Registered: Nov 2004
| IP: Logged |
posted
Glad you were able to get out, have some company and enjoy the weather.
For a long while I couldn't get out to the store. Had trouble driving, was using a walker, couldn't even shower without sitting down and sometimes that was even hard.
One day I felt decent enough to drive the short distance-5 minutes to the grocery store. I really didn't feel that well when I got there, the lights, I was way off balance even using my walker. But I was so excited to be out I called one of my friends from the support group and to tell her that this was my first trip out by myself in ages while I was shopping.
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
marblenose,
Thanks for the recipe. I, too, would spend the entire day cooking (not frequently) for an Indian meal. I am going to take my chicken I bought yesterday (cooked and on SALE) and turn it into an Indian feast.
This past Saturday I travelled an hour to meet with a friend battling cancer for a Indian buffet at restaurant close to her. It was the first time she's been up to it because of mouth problems. Anyway, there is something so centering about Indian food. I wish I could get back into it again.
However, I will simply have to be happy to a new "recipe" for enjoying what I've got.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/