BJ..
 

It seems your doctors are on the "cutting edge" in treating you.

http://www.villagevoice.com/news/073...r,77846,2.html

Warm hugs...and many prayers for improvement. :hug:

(((((BJ)))))

cutting edge is good...

try to NOT cut the cheese while they are cutting the edge...or they might cut
something off by accident...LOL

don't "cut" yourself short. Sew yourself together in your own time...

thinking of you

I know this may be cutting edge but I'm just no so sure about it. I'm so frustrated about my memory loss right now. And I read it might never come back. I didn't have a good memory before and it's scary not remembering how to get from here to there. :confused:

One day at a time dear girl....you've been to hell and back. Be patient with yourself. :hug:

BJ...My daughter had ECT and her memory has improved as time has gone one.

In the meantime - try some creative ways to remind yourself of the things you need to know....post-it notes might do the trick!

((((hugs))) Be patient with yourself!:hug:

ECT is not fun but in some cases it's the only hope. I'm not too confident I'll ever get my memory back because with or without the VNS I still might need maintenance ECTs. If anyone ever asks me if they should have them my answer would be an outright no. Your head hurts so bad and then you have to try and listen to people talking to you. You can't focus because all your thinking of is your head. :confused: So in the meantime I have to stock up on post it notes.

How is it going today BJ....are you getting a little used to it? Just wanted you to know that I'm thinking about you. It's a beautiful Fall day here in Indiana.

:hug:

:hug: Alffe

I'm trying so so hard. I was turned up on Friday and I'm having a lot of strange feelings in my neck like a bee is stinging me and I've been coughing my head off. I called my pdoc about this and she hasn't gotten back yet. I'm a little down today because I'm just feeling like I've gone through all this for nothing. My memory is so bad and it's wearing me out trying to remember things. I'm just so weary in mind and body.

Weekends are so hard because everyone is out enjoying life and I'm afraid to go out in the "real" world. I've been in a safe place and it's scary going out there now.

I've been trying to keep my mind busy and been working outside in my yard which really needed me. And believe it or not, my Rose of Sharon still has about 60 buds on it yet. :D I planted zoysia grass over 2 years ago and I have the best grass in the neighborhood, so thick and lush and it's drought resistant.

So I'm trying to work outside and hopefully I'll crash and sleep tonight. My pdoc knows I'm having a hard time sleeping but will only give me a few pills at a time. It's a beautiful fall day here too and I'm trying to take advantage of it.

I can only imagin how difficult it must be to get used to all your new "gadgets" for lack of a better word. I'm thinking that in time you won't be so aware of it all, although it'd be difficult to ignore a bee sting! :rolleyes:

All kidding aside I continue to keep you in my thoughts and prayers..that all you have gone thru and are continuing to go thru will bring really good results.
Of course, not this soon but hopefully you'll see progress in the near future.

My Rose of Sharon still has a few blossoms on it too...so lovely to be out in the yard today so enjoy yourself...sometimes the "real world" is over rated. :D

:hug: :hug: :hug:

I feel like I just need to keep talking to get thru this night. My pdoc warned me about parameter changes and how it can effect you. I just wish she'd call back soon. I know the "real" world is not all it's cracked up to be, but I do have to eventually get out there and live it again. But I'm afraid. I'm afraid of the stigma attached to me being "there". I just feel like Slim Shady right now. I can't believe it's only 6:30 and it's dark almost already. I've lost most of the summer. :(

:hug: Why don't you go into the BP forum and see if you can stir up a chat with someone. I think Bizi said her hubby was gone fishing. I'd come in but Mr.Alffe just came home with a movie and wants popcorn....again! *grin

It really is getting dark sooner...noticibly. (((BJ)))

Pssst....who is Slim Shady? *grin (remember, I'm old!)

That's okay Alffe. :hug: Enjoy your popcorn and movie. I'll be fine. Slim Shady is Eminem who was locked away in a mental institution.

My pdoc just called and said one of my wires may have come loose from all the coughing. She wants me to have it x-rayed. I'm tired and I'm going to take a nice long bath and try to sleep and shut it out.

:grouphug: Alffe

Who's Eminem? :o Enjoy your bath! :hug:

Dear Girlie,
I hope that you sleep well tonight....do you want to chat sometime...The green light indicates when people are on line if they have that turned on. I will have mine turned on from now on if you ever see me on and want to chat.
((((HUGS))))
bizi

Eminem is a young rap superstar from Detroit. His birth name is Marshall Mathers.

he just spelled it wrong. we all know it's M&M. :p

((((((bj))))))

i hope you got some sleep.

i'm not trying to make light at all about you being "there" but there isn't the stigma attatched to it like there used to be. celebrities, polititions, us regular ole folks speak about it in the open. it takes so much courage to seek out and follow through with the scariest of treatments.

:hug:

hang in there bj. http://neurotalk.psychcentral.com/im...onsb/heart.gif

(((BJ)))

I'm sorry I haven't been here. I'm proud of you. I want to share a short version of being afraid to go 'out there' again.

When I was 28 I ended up in a hospital, far from my family, and was knocking on death's door. I was in the hospital for a little over a month. I was very very physically and emotionally sick.

When I got out of the hospital, it was very frightening. I felt as if I hadn't been part of the 'real world' for so long. And I felt vulnerable. It took awhile to get back into the swing of things. I was dealing with a lot of other issues, not the least of which was my daughter's father leaving us. I couldn't take care of myself and had to fly home to my family. It was very depressing on top of dealing with the ulcerative colitis and fighting for my life.

I tell you this just to let you know it's normal to feel so strange after being in a hospital for such a long time. Especially when you have been fighting for your life.

It will pass.

Oh...and Eminem is such a hottie. :cool: I loved him in that movie 8 Mile. I've watched it several times.

How's it going today BJ...did you get it xrayed? And are you still coughing?
Just wanted to send you some hugs and let you know that we're here for you.
:grouphug:

adding my ((((hugs))) for you too BJ

http://bestsmileys.com/flowers/15.gif

I went to my pdoc on Monday and described the symptoms I have having. She said it definitely shouldn't be feeling like that. So she sent me right over for an x-ray which took almost 5 hours waiting. Then I had to wait to talk to her again to go over the results. One of the leads has come dislodged and needs to be fixed. She's calling in shoddy surgery because even though I cough a lot it shouldn't have happened. Tomorrow I go for pre-admission testing and Thursday I have to have more surgery to have it fixed. I forgot to ask if it needs to be off again for two weeks. But it's off now and for some reason I'm still coughing a lot. But Curious gave me good advice and I bought some today. :hug: I'm just so frustrated with this whole thing right now and I just wish they'd get it right so they can turn it up to a therapeutic level because so far it's done nothing but give me headaches, literally. :(

what about jsut having cough drops in your mouth to dissolve? I do that sometimes to help prevent a cough if I am at the theatre....
I sure hope they can fix it so it doesn't keep you coughing all of the time....
keeping my fingers crossed so that you can get some sleep tonight.
(((HUGS))))
bizi

It sounds like you have a really good pdoc BJ and I guess I'll not comment on your surgeon. :cool: Let's pray for a better result on Thursday. Stay strong dear girl...we're praying for you. :grouphug:

Hi BJ,

I was wondering...... about this cough....... could you possibly be ill with an upper respiratory infection or some sort of bronchial irritation? Have your doctors ruled that out??

Please know that I think of you every day........ sending you some healing hugs ~'.'~

Bryanna

I don't want to comment on my surgeon either Alffe. My pdoc is very upset about all this as I am. I'm hanging on by a thread and they botch the surgery. I can't say enough how frustrated I am, this is my lifeline. It's been another long day. Bryanna I did have some fluid in my lungs so I might have a cold or something but I shouldn't have felt the "zaps" like I have. And my EKG was all out of whack and I had to have that repeated. My pdoc said my heart was racing. So I had to sit and try to calm myself down and have it done again. Another night where I'm so worn out. My pdoc gave me a shot of something and it's starting to hit me. I have to be there at 6:30 am and the surgery will be at 8:30. At least I will sleep then. And my pdoc said they won't turn it on again for another two weeks because they basically have to reconnect everything, so another delay in getting this "right" I just hope and pray that they can get this right and turn it on and I can get some benefit from all this.

sending good thoughts your way for a safe surgery.:Girl(angel-flying):
((((((HUGS)))))
bizi

{{{HUGS}}}} and prayers going out for you today BJ....:grouphug:

:hug:

I hope all is well and that you are getting some much needed rest. You sure deserve for this to work for you this time!

(((BJ)))

Hi BJ,
 

I am so sorry that you are going through this. It's like starting all over for you.

I had my VNS turned up Wed. night and it hasn't done anything for my depression. Now my voice sounds rattled instead of going down. I told my PCP how disappointed I have been with this. We still have to turn it up one more time to see how it's going to do for me.

I still deal with all of the same issues. Suicidal thoughts, depression, not getting out of the house.

I am hoping once you get yours straightened up you will do better though. My problem I believe is because I have so many medical problems. We didn't take that into consideration when I had it put in. We talked about this for 2 years though and when it was approved, we went after it in hopes it would help me.

We're still not giving up on it yet though.

I hope things do better for you after the surgery. Maybe the wire was loose all along and just finished coming off.

Let me know how you are doing.

Ada

HI Ada...I've been reading your posts in the depression forum so I know that you and BJ share this new "experience". I'm praying that given time, both of you will benefit from having this "installed."

I wonder, as you do, if having multiple medical problems would be a factor.
I'm sending you positive thoughts for finding a good result in the very near future. :hug:

Hi Alffe,
 

I really do believe that all of my medical issues play a part in my depression.

I have been in councelling for over 8 years to help with my depression. I have been suicidal since I was a child. I can remember around the age of 9 or 10 being suicidal. I had a lot of medical problems also. I believe I had Fibro and CFS even as a child.

The worst of my problems are the RSD, CFS, Interstital Cystitis, and MS. We can't get the IC under control and the CFS drives me up the wall. I have had the same PCP for over 16 years and he works hard at helping me.

I think my support system is the main thing that keeps me going. I have plenty of that even though I lost my husband 10 months ago.

I think the most disappointing part of the VNS is not being told of all of the side effects and also the fact that the company didn't even care what other medical issues I had.

I'm determined to keep trying with this though. My PCP said we had to turn it up one more notch and that was it. It's a wait and see thing now.

Thanks so much for the kind good thoughts.

Ada

Ada you are so fortunate to have a good support system in real life...people to lean on while fighting that good fight are so important. I'm so glad you have a good dr. who works with you to find the right combination that will lead to light at the end of that tunnel.

We try to provide our BJ with that....we try to let her feel our support right thru our computer screens.

I'm so sorry for the loss of your husband, how long were you married? You really have more than your fair share of health problems to deal with.

Hang in there...and did I say..welcome to the sos family? :hug:

:Wave-Hello: hi ada. i see you followed my link or was it the brownie crumbs? :p

welcome to sos. :hug: we wonder a lot around here. have plates full of stuff. get ticked off...and just offer lots of friendship and support. :D always seems to be somebody here when you need them.

Hi Alffe,
 

Bill and I were married almost 35 years. He was one of the greatest people a person could have known. He looked like Roy Rogers also. A lot of people called him Roy instead of Bill. He was from the old school and knew how to treat people. He spoiled me so now I am having to learn how to do for myself more.

Curious, I followed your link. If the brownies are sugar free then I can follow the crumbs the next time. I have high cholestral and I'm trying to get it down along with my weight. With Fibro you crave sweets though so it was tempting to follow the brownie crumbs.

I do hope that this helps BJ. I know exactly what she is going through. With the bipolarism it's even a harder thing to get better. I do think though once she gets this VNS straightened out she will see some good results.

The people on these forums are such a great help to everyone going through what each is going through. When I first came on the forums around 98, I was hanging on by a thread so I do know that the support everyone here gives helps.

Thanks for the warm welcome also.

Ada

Thirty five years is a lot of happiness, you must miss Bill terribly.

I was just crazy about Roy Rogers as a youngster....Was Trigger his horse?...I remember it was a palameno! (can't spell but the horse was blonde!) *grin

got to get off this puter...Mr.Alffe wants popcorn!

Hugs for the room. :grouphug:

Home again. I'm pretty worn out and my shoulder is not feeling the best. I can't do anything easy anymore and had to stay an extra couple days. The anesthesia made me sick and I was running a fever and they wouldn't let me go until I ate something solid. The surgery took a little longer then expected because they had to do a lot of scraping because I had scar tissue built up. But it's all in now and it will be turned back on in a couple weeks. So I'm right back where I started from almost 2 months ago. So I'm a little disheartened that I've gotten no where it 2 months with this. And I'm a little embarrassed that I can't control it on my own.

But it's so good to be home, once again, and my kitty is sitting in my lap. And I couldn't ask for anything more.

Thank you all for being here for me through this and, like I've said a bazillion times, not feeling all alone in this.:grouphug:

Bj, I can understand your feeling disheartened for two "wasted" months but you have nothing to be embarrassed about. You should feel proud of yourself for going to any length to save yourself...I've said this a bazillon times....I admire the heck out of your courage.

Hug Benton for me. *grin

I hope you sleep tonight.

Love,

Alffe

Hi BJ,
 

OK Girl, I said I was going to bed two PM's ago to you but I wanted to just say hi to you and say that you should not be embarrassed about needing help with this.

That is one thing I have learned in councelling is that's it's ok to ask for help. I came from a family of 10 plus Mom and Dad. Daddy raised all 10 of us without asking for any help. I can remember one year that the Church brought a Christmas basket to our house and Daddy said," So and So needs this worse then we do so we'll take it to them. Daddy was so independent and that's how he raised us.

When I first got sick in 87, it was the hardest thing I ever did to ask anyone to help me. By 91 I was so bad off mentally and physically, I still had trouble asking anyone for help. My councellor and Dr. told me that everyone needs help sometimes and all I had to do was ask and ye shall receive. It took me years to look him in the face when he was taking care of me for free. For 5 years he took care of me free of charge. I was so embarrassed that he was doing that. I finally realized that I could not do this alone.

You and I are in the same boat. With the major depression, we need the support of others and they are so willing to give it if we just let them. A lot of times we don't even have to ask. I didn't with my Dr. and friend.

Alffe reminds me of such a person as he is. SO willing to give of her time and so supportive. You are very lucky to have this forum. Look upon them as friends.

I have some friends on the RSD forum that I dearly love and have never met them. I talked to one of them on the phone today for over an hour. I was just so down and having some hard times I called her up and she was more then willing to talk to me. I had woke her up from a major headache but she didn't mind.

Let the embarrassment go. There are so many people on these forums that are in the same shape as we are. Look at them as friends that you want to talk to and enjoy even if you can't go out and have a cup of coffee with them.

I do know about the scar tissue. I have had 18 surgeries in 13 years and I end up with scar tissue a lot of times. I'm getting ready to have triggerfinger surgery next.

Now that you have the VNS straightened back up, you at least know in 2 weeks what is in store for you. That may be why it wasn't helping in the first place. It could have been loose all along and just finally let go.

What kind of hobbies do you have? I am a collector of everything. I like to make jewelry. I am hoping I can get my hands straightened up to where I can start making some again.

Hobbies help keep our mind off of things also.

With depression, we have to take one day at a time and one night at a time. I like to watch comedies also. They make me laugh. I am getting to where I can sit still long enough anymore to watch a show. We have to keep busy. That is a key to helping us get through those days and nights.

I need to go to bed BJ. I am so tired girl I am rambling. Keep this up and I'll ramble so far from home I can't find my way back. LOL

You have a good evening. I will see you all tomorrow, or at least your writing.

Ada

And this is why I love this forum family..we just take turns picking each other up off the floor.

Such good advice Ada, thank you so much. You and BJ walk in the same shoes and I think a Higher Power has brought you together.

I'm leaving town (my own idea..:D) and won't be back until tomorrow evening so I wanted to let you know that you're going to a football game (I always carry you in my heart).

:grouphug:s for the room.

Hi Alffe,
 

Who's playing? I am not a big football fan unless I can be at the game. Then I have a ball watching them but I'm always asking someone what happened when someone scores. It all happens so fast.

My youngest grandson is on the 7th grade football team. He is one of the littlest ones on the team but that kid can run and tackle.

Two weeks ago he didn't wear his belt to the game and he got his pants pulled down. I laughed so hard. He just jumped up and threw his hands up in the air and cheered. Nothing embarrasses that kid.

BJ, I am so tired today. I didn't sleep last night at all. I finally woke up and watched some tv and messed with the computer. Even with oxygen, I have trouble sleeping.

How are you feeling? I hope you heal good and fast so we can get your VNS back on to see how you do. I am anxious to see how it does for you.

I think I can see some difference. My mind isn't racing a 100 miles an hour. It never stopped before. It was like a tape recorder or tv playing the same movies all of the time. I can sit still for a little longer now also to read a little or relax and watch tv.

There are some things that it hasn't tackled yet but maybe in time.

My caregiver is taking me to town this morning. I want to go to Wal-mart and get some groceries. That I hate to do. I run in and get what I want and get out. I have panic and anxiety attacks at times.

It's cold here right now but it's going to get in the 70's today.

After my Dr. turned my VNS up my voice got somewhat back to normal again. I was surprised about that. Everyone says it's not going down or breaking up as bad. I actually called him up and him if he was sure he turned it up. He laughed. Actually the reason I did is that the last time he was suppose to have turned it all the way down he didn't turn one of the settings down enough and I stood it as long as I could and then went back in and had him to turn it all the way back down. I am determined to make it work though. We have one more turn up on it then we will sat back and see how it does.
Keep your fingers crossed for me that I can leave it alone this time.

What are you going to do today? Do you get out much? I get out maybe once a week. This week I will get out 2 times. I see my Dr. Wed.

Next week I will have 2 Dr. appts. That's my time out, going to see my Drs. I have a Neurologist, Urologist, Gynocologist, PCP, Hand Surgeon, two Orthopedic Drs., an Anesteologist, Poditrist, Ear Dr. so you see, I have lots of time out. I forgot my wonderful Thoracic Outlet Surgeon in Denver. Too many to keep up with.

I bet I saw 100 Drs. before I finally got a good lineup.

How long have you been dealing with depression. I know a lot of people have heard your story but I haven't heard it all so I'd like to hear about it.

I do know about bipolarism. I have a neice and her son with it. It's a hard one to get under control but if you find the right meds, you can do good with it.

I sure hope you are feeling better. Here it is after 8 and I am just as tired as when I went to bed.

You have a good day and let me know how you are feeling.

Ada