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rob
09-28-2009, 08:27 AM
I just wanted to let everyone know, that if you have not recieved any private messages from me, and you haven't seen me post much, it's because of the problems I've been having with Trigeminal Neuralgia, and various other nerve related problems. I don't want anyone to think that I am ignoring them. I'm just really tired, and dealing with pain 24/7 has knocked the wind out of me.

I'm not going anywhere, and I am here everyday to do my duties as a moderator, I just have been finding it difficult to express myself. There seems to be a disconnect between my brain and my fingers. At times, common words look totally foreign to me, and sometimes I look at a picture of something, and I don't know what it is. It's very odd, and really frustrating.

Anyway, I'm a little down lately, but I'm certainly not out. And since quitting is not an option, I'll just have to push through all of the various symptoms and treatments. I hope all is well with everyone. Thanks for listening and for all the support you all give to me. It really helps.

Rob

abbasgirl
09-28-2009, 08:30 AM
We love you Rob! and totally understand. (((((Hugs)))))

Oluwa
09-28-2009, 09:08 AM
Hi Roblet...head hugs and rubs..Knuckle rub.

Have you been to the neurologist for this symptom of not perceiving, what is it... what you are seeing...you should...

Sister still coming to be with you?

Fall arrive up north yet? With it being such a wet summer, the leave turned yellow here, so it was like fall all summer long...Leaves littered the pool. Today was masses. And only one frog to rescue...

We shopped for mass shrubs yesterday....going for even more curb appeal as we are putting our house up on the block sometime from January to March...Seattle here we come. How I miss the mountains, the green all year around that I even dream of them. My neighbor said too much sun for ya here....actually I feel the opposite. To me it is so gray for 6 months and everything is stripped of it beauty, no leaves...dead grass and cold winters. Severe thunderstorms all summer and humid. People think Seattle is full of snow...well it only comes down a few days out of the winter and it doesn't get 19 - 20 degrees like here..

Though this time of the year I find to be really the only nice time out of the whole year...no heat or AC running...we won't miss those $400 electrical bills. But I will miss my pool.

We will not be living in our house while it is on the market...we decided to move, leave it empty and rent a townhouse in Seattle till it sells...and search again for a resale.

I took my MTX today, slight feeling of disconnection. Rubbery like Gumby and tired. Staying focused helps...are you finding anything to do to keep your thoughts from unraveling? Watch Bruce Lee or westerns....I find they are very sedating and ...calming...requires little attention but keeps the mind focus. After I hit enter to post this I am going to find a movie like that...


You don't have to reply , just something to read for you to focus to let you know I am thinking of you and saying a prayer for you...

Hugs with love,
Oluwa

brandichi
09-28-2009, 09:24 AM
Hi Rob,

Don't worry about anything, just take care of yourself and do what you need to do. I've been thinking about you lately, wondering how you were doing and hoping the Trigeminal Neuralgia had subsided. You are in my thoughts and prayers and I'm hoping things improve for you quickly.

If it helps, try to keep in mind that this is temporary. Lupus and all the other auto-immune stuff gives us good periods and bad periods. Like in Rob Thomas' song, "She'll be alright, just not tonight." I love that line. So if you're down now, there's just one way to go - UP!!! And you will. I was thinking about how strong you are, as I perceive you. I remember when you posted about helping with the sandbagging during a storm, and both admiring what you were doing and hoping that one day I would feel strong enough to do something like that. Well, I still doubt I'd be able to lift bags of sand for more than a minute, but when this passes for you - and it will - you'll go right back to doing those kinds of things again, and more.

We haven't communicated much here yet, but I've noticed your strength, your compassion, your kindness, and your support. You're a special person, and I know that better days are ahead for you. :yes:

Angel Oliver
09-28-2009, 09:30 AM
Hi Rob,

Always in my thoughts and everyone here too. Just rest and know you have all our support.Miss you,but please just get a little better by resting and i hope soon you feel a little easier .

Love n hugs
Amanda.xxxx

lucky7
09-28-2009, 12:15 PM
Oh dear Rob~ YOU are SO SPECIAL and im so SORRY for what you are dealing with. I WISH i could STOMP it all right on out of YOU:fighting0050: BUT, since i cant, ill give my "Robs illnesses" Voo Doo doll a few POKES with some pins and some HEAT over a nice HOT fire and who knows, it just might give it at least a little KICK in the a~~ to STUN it for a bit!

YOU are ALWAYS in my HEART:hug::heart:

mountaindreamer
09-28-2009, 12:29 PM
hi rob,so sorry your good days are less frequent. My wish for you is one day of "wa hoo, feeling great". Rest, and don't worry about us, we all know that you are watching over us.

debbie-b
09-28-2009, 12:50 PM
Rob,

We all love and miss you. Work on feeling better, don't worry about us.

Debbie

tiggerlishus - Heidi
09-28-2009, 02:36 PM
hay rob sorry to hear you gonig throu it big huge massive gentle lupie hugs and kisses xxxxxx H xxxx

Tamy
09-28-2009, 04:11 PM
Hey Rob
I'm only new around here, but I want to wish you well wishes too. You seem like a great person, and I really do hope your feeling better soon.
Tammy.

Bonita
09-29-2009, 06:19 AM
Me too Rob hope that you are feeling better soon and the bad days are less and less you are always there for everyone else. Love Bonita

rob
09-29-2009, 07:50 AM
Thank you to all my friends, both old, and new. One of the best things about you people, and this place, is that I can come here and read supportive messages from people who understand. On the really bad days, things like this give me something to look forward to. I know I can log in and find kind words, and encouragement. And on the worst days, even one tiny thing to look forward to can get you through the rest of the day.

The pain has subsided a bit today. I feel almost human. Going to eat some real food, and try to get some real sleep. Then I'll try to do a little work around the house. Sis has been helping me, but needs a day or two off. I think I'll be OK alone today. Now, what to eat...

Apple pie, a large thin crust pizza with pepperoni and green peppers, maybe a chicken chimichanga with a side of refried beans and a Corona with a bit of lime. It all sounds good. Or maybe I'll go to Murphys in Belfast (Maine) for a good Irish meal of stuffed cabbage and a pint of Guinness. Can you tell I'm hungry?

Thank you guys for all you say and do.

Rob

mountaindreamer
09-29-2009, 08:23 AM
wow rob, even on my bad day where all food sounds yucky.....you made my mouth water....chicken chimichanga sounds sooooo good. so glad to hear that you are having a decent day.....take care and enjoy some good food along with a little cheer....you deserve the break.

BonusMom
09-29-2009, 09:12 AM
((((((Rob)))))) Hugs to you, Rob. Please know how much we're all rooting for you and wish for you to be pain free.

You've stared this garbage down just like you did those nasty bullies. We know you won't give up without a fight!

Be kind to yourself and try to rest. Let those that love you help keep you strong while you're dealing with this (in other words-don't "man up" and be too proud/stubborn to accept help). We'll all be here when you're feeling better.

AyahsClan
09-29-2009, 12:12 PM
Oh dear Rob, love and hugs to you. Trigamengeal neuralgia (sp) is the absolute worse pain on the planet. When mine flares it is like 30 open root canals and someone is pouring ice water in them. It is wretched. May God bless you and STOP this flare. I will post a picture of myself when I had it several months ago so you can laugh at me. I wrap my face tight in sarongs.

Last bout I had a tooth pulled but I learned that you can pull them all out and it will not solve the problem. I use neurontin, avalox, norco and prednisone during a TN flare but I heard there are new drugs they give to help.

Love,

Ayah

abbasgirl
09-29-2009, 02:02 PM
Rob, so glad to hear you've got some relief and you've got a good appetite. Remember to take it easy on yourself and only reply when you can. We're here missing you but we know how it is and would prefer you take great care of yourself and no pushing.

I've never tried a chimichanga... you've ignited my curiosity and I may just try one this week.

lucky7
09-29-2009, 03:51 PM
Oh chimichangas are SO GOOD!!!! Carl and i went to our favorite mexican restaurant all the time when we were dateing and i got THOSE and/or BOATONAS EVERY TIME! YUMMMMMMMMY!!

SandyR
09-30-2009, 05:33 PM
Rob -

Sorry to hear that this match with TM is lasting so many rounds. I hope that you are soon back to better.

Sandy

Spanglishqueen
09-30-2009, 06:13 PM
:hug: Sad to hear you've been through so much lately but you don't always have to be the shoulder to cry on you can cry on ours. I wear shoulder pads when needed so consider ,my shoulders big enough :)

:hug: :kiss:

rob
10-01-2009, 05:24 PM
Hi Roblet...head hugs and rubs..Knuckle rub.

Have you been to the neurologist for this symptom of not perceiving, what is it... what you are seeing...you should...

Sister still coming to be with you?

Fall arrive up north yet? With it being such a wet summer, the leave turned yellow here, so it was like fall all summer long...Leaves littered the pool. Today was masses. And only one frog to rescue...

We shopped for mass shrubs yesterday....going for even more curb appeal as we are putting our house up on the block sometime from January to March...Seattle here we come. How I miss the mountains, the green all year around that I even dream of them. My neighbor said too much sun for ya here....actually I feel the opposite. To me it is so gray for 6 months and everything is stripped of it beauty, no leaves...dead grass and cold winters. Severe thunderstorms all summer and humid. People think Seattle is full of snow...well it only comes down a few days out of the winter and it doesn't get 19 - 20 degrees like here..

Though this time of the year I find to be really the only nice time out of the whole year...no heat or AC running...we won't miss those $400 electrical bills. But I will miss my pool.

We will not be living in our house while it is on the market...we decided to move, leave it empty and rent a townhouse in Seattle till it sells...and search again for a resale.

I took my MTX today, slight feeling of disconnection. Rubbery like Gumby and tired. Staying focused helps...are you finding anything to do to keep your thoughts from unraveling? Watch Bruce Lee or westerns....I find they are very sedating and ...calming...requires little attention but keeps the mind focus. After I hit enter to post this I am going to find a movie like that...


You don't have to reply , just something to read for you to focus to let you know I am thinking of you and saying a prayer for you...

Hugs with love,
Oluwa

Hi Oluwa,

I've spoken with my neuro before about the perception problems, and he believes it's cognitive dysfunction manifesting itself in a way that I am not used to. We haven't gone much further in conversations about it or tests, because there's so many other problems that require immediate attention.

Sis has been helping out, as has my father. It's definitely fall here. Cold nights, cool days, lots of fall colors already.

I didn't know you were moving to Seattle. When did this come about? As far as keeping my mind occupied, many times I will sit down at my train layout and run them for awhile. Doesn't really require alot of attention or concentration. Or I'll watch movies. Put all 6 Star Wars movies in the player and run them back to back.

Is the MTX agreeing with you a little more? I hope so. Have a good night, and thanks for the prayer.

Rob

Saysusie
10-05-2009, 09:12 PM
Rob;
Dear friend. I am so sorry that your TN is, once again, causing you pain! Please, please know that your health comes first and if you are unable to moderate, do not feel obligated to do so. I want, so very much, for you to get some relief from your pain and to find some restful moments to enjoy the relief.
Do take care of yourself and make that you first and utmost priority! We all love you and want you to be well. I, especially, want you to let yourself take the time that you need for you. Promise me that you will do that.

Always Here For You
Saysusie

Saysusie
10-05-2009, 09:14 PM
Oluwa;
I am so happy to hear that you will be moving to Seattle where you can, once again, enjoy the green lushness that you so crave. Do not over do while in the process of moving. I wish you the very best in your move and I know that this move will make you a bit happier!

Always
Saysusie

kim,l
10-05-2009, 10:22 PM
Dear rob sorry to hear you have been so poorly i hope you have better days my friend you have been such a rock for me even when you were sick yourself rest up eat good and donot worry about us let us do the worrying about you for change and hopefully less painful days ahead i am glad you have someone there to help you. Your sister sounds really wonderful. Love and hugs kim l

rob
10-05-2009, 11:19 PM
You guys, are really something.

One of the high points of my day, every day, is coming here and seeing the honest, sincere words that are given to those who are in need. When that person is me, it is something that gives me the motivation, and hope I need. This stuff, the pain, just hurts. It has worn me down.

But I'm not about to give up. Thank you all, for cheering a person on when they really need it.

Rob

abbasgirl
10-06-2009, 06:44 AM
Rob...you are really something. You play a huge role in support here and we all appreciate you so very much. Love that attitude you have!

Oluwa...congrats on the move, sweetie pie! That's wonderful!! Once you're moved and feel up to it, I hope you'll update us about your change in scenery and how the move went. ((((Hugs))))

rob
10-06-2009, 11:33 AM
Rob;
Dear friend. I am so sorry that your TN is, once again, causing you pain! Please, please know that your health comes first and if you are unable to moderate, do not feel obligated to do so. I want, so very much, for you to get some relief from your pain and to find some restful moments to enjoy the relief.
Do take care of yourself and make that you first and utmost priority! We all love you and want you to be well. I, especially, want you to let yourself take the time that you need for you. Promise me that you will do that.

Always Here For You
Saysusie

It will take a whole lot more than TN to knock me out of the game. SLE? Bah! MS? Pfft!

They've got nothing on me, so, I'm afraid you are stuck with me!:laugh:

tiggerlishus - Heidi
10-06-2009, 04:16 PM
"They've got nothing on me, so, I'm afraid you are stuck with me!"

we wouldn't want it any other way!! xx

Jerzi
10-06-2009, 05:27 PM
It's horrible to come on here after weeks of absence to find a post about how someone is presently suffering. While there is a good chance you're sick of hearing/reading this string of words, I shall say it anyway: I'm sorry that you're in pain and dealing with TN.

We don't speak much, but it's pretty obvious that you're a trooper and will be back on your feet in time.

Hopefully, you're getting bouts of relief from your pain and taking time to rest.

Take care, Rob.

lucky7
10-07-2009, 01:32 PM
IM SO HAPPY TO BE STUCK WITH YOU ROB!!!!! :yes: Just like the song by Huey Lewis and the News "Happy To Be Stuck With You"! Just picture me singing it to YOU!!!!!!! Except the voice in YOUR HEAD will be MUCH BETTER than the real thing! LOL:laugh:

Saysusie
10-08-2009, 12:50 PM
You are incredible, my friend!! I had a feeling that this would be your response. But, I am going to be watching you like a hawk and doting on you like a Mother!!! So, be prepared!!

With Love
Saysusie

BonusMom
10-08-2009, 04:53 PM
Look out Rob......if you don't take care of yourself, SaySusie is gonna come up to Maine and mama you!

Hope you're doing better this week.

mountaindreamer
10-08-2009, 07:19 PM
hi rob, hope you are feeling ok....i agree with bonusmom...you had better take care of yourself, i bet saysusie can dish out some serious mama stuff.

lucky7
10-16-2009, 10:01 AM
LOL I bet she CAN!!!! But, as we obviously KNOW , she would do it with SO MUCH LOVE!!!:cute::heart: