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Posted 10/25/2008 5:45 PM (GMT 0)
I know she isn't going to be on line for awhile. I also know she is very depressed and has this surgery coming up. If anyone speaks to her off line would you please let her know people are praying for her? I have no way to reach her or I would do it myself. I'm very worried about her right now. I do understand stepping away when we need to but I'm just hoping she is doing it for the right reasons. We need each other especially when we are depressed and struggeling. I know she would be telling me not to go hiding away from everyone when I'm down and depressed. Anyway please let her know I'm thinking of her.

thanks

carol

Posted 10/26/2008 1:22 AM (GMT 0)
Hi Carol, I had to step down for several months myself. It got really depressing here with so many having such a hard time and I just had to step away and get some new perspective. Ginny has taken a break at other times too. But you are SO right . . . it would be great to hear from anyone who has a chance to talk to her. Folks like you make this forum such a welcoming place!! Thanks for your caring heart . . and I'll be watching this thread (with you) to see if anyone hears from sweet Ginny. I always enjoy her posts and she was the first person to greet me when I joined this forum and needed so much to talk to others about this DD. She was the Lupus Mod at that time. . . and she did SUCH a great job!! She set the tone for positive attitudes, thats for sure! Blessings!
Posted 10/26/2008 3:09 PM (GMT 0)
Carol, I too want Ginny to know I'm thinking about her.

I've also been thinking a great deal about you. I've been lurking more than posting, and I keep looking for posts from you. I know you're in a tough place right now and I'd like to hear how you're doing. Rosie is right. You're one of the most welcoming and caring person here. So do us a favor and let us support you while you're going through a difficult time.

Thanks for reaching out to Ginny.

Love ya,

Pat
Posted 10/26/2008 11:19 PM (GMT 0)
I am so worried about Ginny. She is such a sweetheart. If anyone has the ability to talk to her, please express my love and concern and prayers for her too! You have all been wonderful blessing in my life! Love ya, Judy
Posted 10/27/2008 5:05 AM (GMT 0)
Oh you guys are great! I'm just worried because I know she has surgery coming up. I'm being a mother hen. I can't help myself. Patty have you spoke to Barb lately? I need to call her. I don't seem to know where my time is going anymore. I feel like I'm walking around in a daze. Than at the end of the day I think about all the things I should have done.
hugs
carol
Posted 10/27/2008 4:12 PM (GMT 0)
Hello my wonderful friends...I"m in sobbing tears right now. Sobbing because of the incredible kindness and concern you have for me. I thought I'd just take a peek and see how things were going here.  Being away from the forum has been needed, but I have such a bond with so many of you, that I'm feeling a disconnect not being able to talk with you.

 

My Fibro is what is giving me so much pain, physically and emotionally right now. My lupus seems to be non-existant at the moment.  The depression, PTSD, and sadness I'm having is unbearable and I am getting some counselling for that, as well as being on Zoloft. I've been on it a week, so it's still too early to see any changes.

 

I'm so sad you guys. I'm watching my friends have babies, careers, social lives, moving forward with life.  I'm watching myself having a hysterectomy, unable to maintain my photography business, no social life because I'm so sore and tired, and regressing in life.  I'm moving backwards. I feel so left behind, and disabled. I feel hopeless. I can't picture myself being better and getting through this. I'm going to feel this way forever. 

 

I need some serious prayers. I haven't felt this poorly, ever.  I have to honestly say that the way Fibro makes me feel is 100% worse than how Lupus makes me feel.  Fibro is torturous. Those of you who have it will understand what I'm saying. At least with Lupus, I can medicate and get out of a flare.  No treatment for Fibro.  That's where the hopelessness stems from.  Knowing there isn't very much I can do to alleviate this.

 

I'm also feeling very concerned about what this surgery is going to do to me.  That gets my anxiety going real good. Can I ask for prayers regarding that surgery too? It's on November 5.

 

I'll put my email address on my profile. I won't be here as often, but I think checking in with you all is important.  I can't go through this alone. You are the only ones who can understand what I'm going through. I need your support.

 

Love you all so much,

Ginny

Posted 10/27/2008 5:00 PM (GMT 0)
Hi Ginny:

Oh dear Ginny, I'm sorry you're feeling so down and low. I understand how you feel I truly do. I'm like you I've got Fibro in addition to my Lupus/RA/Cancer. I feel like I'll never feel better again. I understand your frustration that you're loosing your life and things will never look better. All I can say is I'll pray for you Ginny and well have a special bond between us and we'll both hold on and make it through this.

As for your surgery it's gonna go just fine. I had a hysterectomy when I was 32 yrs old. I had it done with the surgery opening up my belly surgically. I to worried about the forced menopause and such. How would our sex life be like loosing my uterus and tubes and ovaries. I had lots and lots of anxiety over it. I can tell you things worked themselves out and it was actually the best thing I've ever done.

If you need to reach me I'll put my email address on my profile for you. If you have any questions no matter how personal I'll respond I promise. I'll say plenty of prayers for you and know that I'm thinking of you. You email me if you need me ok.

Hugs,
Barb
Posted 10/28/2008 1:17 AM (GMT 0)
(((((((((( Ginny )))))))))) Tie a knot in that rope Ginny !!! Hang on girl. You've done such a GREAT job defining your pain and your sense of loss over your illness(es). That is a WAY big step for anyone to take . . . and it is a very necessary step in moving forward. I won't say I know how you feel . . . because I've never been so ill and I do have children. But I can tell you that I don't take my health or my family for granted . . . because I feared, when I was young, that I would not be able to have kids. BUT . . . I can really empathize with you . . . and I can REALLY pray hard for you sis. You are SUCH a beautiful person. You have filled voids in my life that my own mother could not fill. Honest. Your beautiful, blue responses to my first posts here meant/mean the world to me. You will never know how much your detailed messages have helped me and SO many others. ((((((((((((((((((((( Ginny ))))))))))))))))))))) A way big, but gentle, hug for you my sweet sister. I'm warming up the grain bags and tucking you in. Some sleepy dust and some hot tea. Flowers on your nightstand and soft music to fall asleep to. Your surgery will help your body. No more hemorrhaging for you!! You will have SO much more strength because it won't be poured out each month. I bet it will even help your fibro. This anxiety is more wearing than physical work. I'm so glad you shared your feelings here. You are helping others even now. Those who can't express their sadness can read your topic and gain some hope. Take care girlfriend!! Blessings!
Posted 10/28/2008 5:47 AM (GMT 0)
(((Ginny))) I'm sorry I haven't been on much. I hope that your surgery goes okay. I was so glad when I got my hysterectomy in my thirties and got on estrogen patch. My ovaries hadn't been working at all and getting estrogen was like being a little girl again. I felt so much better, like every day was great and my moods were so stable. I've had surprisingly few melancholy moments over it. Know my thoughts and prayers will be with you during this time and I hope things go well for you.
Posted 10/28/2008 11:12 AM (GMT 0)

Hey Ginny,

Glad you could join us if only briefly.  Hate to say it but it is true.  My first thought when I read your post that you were going to be gone for awhile, was, "What will I do without her?"  But I am also glad that you know when to back up, or back off.  Knowing one's boundaries and limits are most of the battle.  Hope that this vacation away from this forum will help you to see where you are going and how you will get there.

Yesterday I took the journal of pain to my rheumy.  I was such a wimp at the office visit with him, and forgot and left the pain journal at home.  did not remember it until I was in his office waiting to be seen.  but he has them now.  and this is thanks to you and others for encouraging me to write this pain journal.  Did too much yesterday probably but it hasn't hurt me yet.  two doctor's offices, and the diagnostic center,  a n d picked the kids up from school.

Take care Ginny.  We ae all probably waiting until you can return to us, but take all the time that you need to take.  Be well, and know you are missed and cared for.

Hester

Posted 10/28/2008 3:16 PM (GMT 0)
Hi, just checking in.  Hope everyone's morning is off to a good start.

 

Thank you for the encouragement everyone.  I see my psych doctor this afternoon. Going with lots of kleenex!

 

The hysterectomy issue is freaking me out because i'm afraid of infection and bleeding. I'm not losing my ovaries.  Keeping those, so I have the hormones.  But the way my hormones are acting these days, I'd almost rather not keep them!!  I think I'm in perimenopause....I'm a loopty loo cry

 

Is it bad for me to need some heavy duty pain medication?  Like the narcotic stuff?  I'm having so many issues being okay with taking them. I don't want to become addicted, and I don't want to be labeled a junky.... Why is there so much stereotyping when it comes to stuff like this?  You guys, the pain is crazy.  Nothing even takes the edge off.  I think I'm going to have to resort to taking the heavy duty stuff.... Why do I feel so bad about taking it? 

 

I want you all to know how much it means to me to hear your posts and how much I'm needed.... I don't feel needed right now. I feel like a burden to my husband and family. I feel like I'm not contributing to anyone or anything.  I'm just a big lump on the couch unable to be productive and useful. It encourages me to know that I'm needed here.  We all need to be needed.  I need you!!

 

love

Ginny

 

Posted 10/28/2008 3:28 PM (GMT 0)
((((((((((((Ginny)))))))))), of course you have my prayers. You don't even have to ask! I'm glad you left your email addy. All I kept thinking was She has her hysterectomy coming up! How can we support her? You are such a wonderful woman and great cyber friend I would feel left out if you didn't let me help you through this surgery. Even though it will probably be the best thing you ever did for yourself it still has a price to pay. I had mine when i was 26. It was that or be dead from cancer in a year. So I was in the hospital and had the surgery before I could even think about it. I think it was probably a good way to do it. For the most part I have never regreted it but when I met my husband I was was 28 and wished I could still get pregnant. I felt like I wasn't a real woman anymore. Than I realized that ovaries don't define who I am. I'm a loving,caring ,funny,compassionate,smart, beautiful, and humble! Not one of those words could describe a felopian tube! Could you hear me saying Hi here's my cute uterus tongue .

As for feeling like you are being left behind. I think we have all felt that way before. We are entitled to feel that way from time to time. I'm sure your feeling it even more right now with the surgery coming up. Ironically I was watching TBN the other day and they talked about comparing ourself to other people. When we do that we think, they have more money,nicer home,skinnier,prettier, newer car. In other words if we compare ourself to others we will never be happy. I'm not sure that going on with ones life is all it's cracked up to be. Did you notice all the people that were concerned about you on this thread? We have never met you in person and we all love you. You have been able to reach out to people with your words and your faith and comfort them. All though I would never wish anyone to be sick I am glad you were here for me. I think people on here that are sick are very special people. They have a special gift. Compassion. Maybe God planned it that way. I think we all have a purpose in life. You may choose to think that other peoples life is going on and you are stuck where you are. I don't look at you as being stuck. I look at you as being right where God needs you to be. You touch so many lives we need you to be here.

Ok I'll quit being mouchy turn   I just want you to know you are loved and if there is anything I can do please let me know. We are all praying for ya

love ya

carol

p.s. I must have been typing this while you were typing. Obviously you type faster than I do. No there is nothing wrong with taking a narcotic if you need it. That's why the doctor gave them to you. Plus being in pain is not going to help you with your mind frame.

Posted 10/28/2008 3:51 PM (GMT 0)
Ginny -- Take your meds, girl!!!! As Okie said, being in pain is not going to help you -- not mentally, not physically -- the doctors would not have prescribed them if they didn't think you needed them. Also, someone who is going to become addicted is probably NOT a person who would remain in pain rather than take them - so I think you are safe in that area. And that same applies with the 'junkie' label -- although with all I've heard on here about family criticism when it comes to some meds, I'd keep what I take close to my chest. Only one person, besides me, my drs, and you guys knows what I take -- and emergency personnel when they look thru my wallet. I don't think it's anyone else's business -- certainly not extended family. I know you are tossing everything on the pile and doing a lot of grieving all at once -- that's the way it is for me, too. Either *everything* is wrong, or everything is ok - no half measures! If I try to take one issue at a time & deal with it, that works out better than dealing with everything at once - hard to do, I know, but like kinda' like eating the elephant one bite at a time. I wish we could all jump thru the computers and pop out in your life from time to time to perk you up and remind you that you are not alone. Hang in there, sweety, it will all work out for the greater good.
Posted 10/28/2008 4:03 PM (GMT 0)
Ginny,
Sweetheart, please know that I am, along with everyone else, holding you up before God. He knows right where you are. I went through a very similar time, when I just felt engulfed in blackness. Hang in there, it may not seem like it now, but this too shall pass. There are bright, sunny, happy days ahead if you just hold on. I understand about the narcs, I feel the same as you, but sometimes you have no choice. I even spoke with my pastor about it. He is very practical. He said if you will get your pain under control, it will ease the 'struggle' your body is having. There is nothing wrong with taking it when you need it! You are not going to become a junky.

Dont believe the lie that you are worthless. You are an awesome, wonderful person, with alot to offer. If there were more people like you,this world would be a better place! Hang in there. Love ya, Judy
Posted 10/28/2008 11:01 PM (GMT 0)
Well, I haven't been prescribed any narcotics - yet.  I did have an appointment with my doctor today.  He prescribed Neurontin. I've never been on it, but he said it works great as a pain med.  So I'll give it a shot.  We're going to see how I respond to morphine, etc, when I'm in the hospital.  If it works well for me I can try it over the long haul.  I had a good talk with my mom about the drug thing too.  She said exactly what you guys said.... Smart women tongue

 

I did have a meeting with my behaviourist. He's sort of a scaled down version of a psychologist.  He said that my case is beyond what he can do.  So I need to see a psychiatrist and get some psycho-therapy for the PTSD, etc.  That's all being arranged for me. 

 

So I'm having a very painful day today.  My lower back is on fire. I'm going to go ice it and try to enjoy the hockey game on t.v. tonight.  Thank you for lifting me up and putting some common sense into me!  I'm not feeling very rational these days.... LOL.  I do take what each one of you has said very seriously. You've given me a lot to think about.... Thank you!

 

Has anyone taken Neurontin?  I want to research it before I fill the script.

 

Love

Ginny

Posted 10/28/2008 11:27 PM (GMT 0)
I'm taking neurontin. Started in September. I am taking it for nerve damage in my legs. It has helped with the 'burning' feeling majorly. It takes a little while to start helping. I haven't noticed any side effects. Judy
Posted 10/29/2008 10:04 PM (GMT 0)
Hi Judy ((((hugs)))),

 

Well, I'm encouraged to hear that you have success with this medication.  I can't start it until I'm home from the hospital. I found out that it doesn't mix well with morphine, which is likely what I'll be on post-op.  So I'll give it a try when I'm home.  Thanks for the info!  How long approximately did it take for you to notice an improvement in your pain?

 

I'm having a better "head and heart" day today. I feel calmer. I know there's a lot of people praying for me. God is faithful!

 

I hope you're having a good day too Judy,

 

Ginny

Posted 10/30/2008 2:17 PM (GMT 0)
 don't feel needed right now. I feel like a burden to my husband and family. I feel like I'm not contributing to anyone or anything.  I'm just a big lump on the couch unable to be productive and useful. It encourages me to know that I'm needed here.  We all need to be needed.  I need you!!

love

Ginny

 

Sometimes the giver must be the recipient.  I am certain by the way you respond to people here that you have been a giver to your family, even with the pain and sickness  you have dealt with so well.  Now it is time for you to recieve.  Time for you to rest, and prepare yourself for what is ahead.

I am familiar with the lower back pain, for I have it myself, but not anywhere near the level of pain that you seem to be feeling.  Just try to accept that it is now your time to recieve, and set your mind to the potential long term results.  Let your family and us give back to you some of what you have so freely given to all of us.  And know that you are needed by your family and us.  But they and us also need for you to be the best that you can be, and to do that it seems to me, you must accept that you must be on the recieving end for awhile.

Much love and prayers to you Ginny.  you are a remarkable woman.

Hester

 

Posted 10/30/2008 5:17 PM (GMT 0)
Ginny, I was on it about 3 weeks befor the "burning" sensation stopped. What a relief! I'm so glad you're feeling better today! God is so faithful! I will continue to pray for you. I'm actually at dialysis right now, I am so thankful I can get online, it makes the time go so much faster! Love ya, Judy
Posted 10/30/2008 11:12 PM (GMT 0)
I peeked in here tonight too, as I popped into the Crohns, cos I have a bad scare there.
Hey, hey, hey my friend, GINNY! You are Always in my thoughts, and Maggie Mai and Ana Chi are just longing to send their beautiful pop eyed love to ye!
I will keep my fingers and toes crossed for you on the 5th November.
You are certainly NOT useless! I know all the stuff you feel I feel, but in different ways.
Sometimes it just seems all up hill, ALL the time.
I dont quite know how we deal with such difficulties but I am going back to counselling too, as I have been 'shooting' off at everyone and even lost my GP cos of my stress and distress at being so ill.
I also have a gut scare and get a CAT scan result tomorrow and hope and pray it isnt cancer.
Ginny, I don't know why I popped in here, I must have meant to. I saw your name and 'went for it', someone made me, and I tellya I am glad.
Comm'on dear friend, there are two sides to your coin and many edges to that coin, so dont just think of the illnesses and how it pulls you back from progressing, just think of the little things, cos thats all we can do really.
I wish I could practise what I preach but you are over 20 years younger than I.
I want you to be happier than this, maybe when the op is done and dusted the relief and the relief from its contant pain will help enormously on all fronts.
Yep, I will get the beads out.
xann
In dublin Ireland nono
Posted 10/31/2008 2:04 AM (GMT 0)
Hester,Judy and Ann,

 

I think you all are remarkable women too. So much encouragement and care. I really do feel the love and understanding when I'm here. Thank you so much.  I will let my family give to me, Hester.  So interesting that you would even write that today.  I spent the day with my mom, which was great.  She said the same thing to me.  We had a long heart to heart and she now realizes my emotional pain and is going to help me figure things out. I tend to, have my whole life, bottle up my feelings. I appear to be fine, but I'm not.  So how do others know how I really feel when I don't say anything! Anyway, it was a good day today despite the pain I was in. LOL.  Hester, thank you for your kind and honest words.  In the short time we've been talking, I feel a connection with you!

 

Judy! You're on dialysis? Oh my. How often?  HOw are you feeling, do you notice a difference?  I'm praying for you too Judy. (((hugs))) I'm taking your book with me to the hospital. It's definitely worth another read!

 

Ann, my friend! I got the picture and email of Ana Chi just now. She's soooo funny.  Dogs sure can sleep can't they!  Like you said, not a care in the world!  Thank you for checking in with me.  I will be praying that your CAT scan is normal. Thank you as well for your encouraging words. 

 

Good night,

Ginny

Posted 10/31/2008 3:56 PM (GMT 0)
Ginny chuck, was going to email you alone but I wanted my other friends here too, to know that the CAT scan indicated that there is enough crohns activity around the join of the surgery to cause my malaise of late and I am to stay on the full whack of steroids, otherwise my internal organs are just fine!!
What a relief.
The steroids are kicking in actually.
I have AWFul lower back pain but I have always put that down to the muscle wasting disorder. I also have burning in my hands, feet, calves and knees.
I was prescribed neurontin but am afraid of it. Although the amount I have taken has had no bad reaction but am not taking what was asked of me.
What is the dose one of the women here mentioned was on it.
Oh, also another drug for Lupus, medocane or something sounding like that, has been sanctioned by the health board and I will have that in a few weeks time.
I am witless terrified of meds.
xx Ann
Steroids are actually kicking in already.
Posted 10/31/2008 4:08 PM (GMT 0)
Hester, thank you for your kind and honest words.  In the short time we've been talking, I feel a connection with you!

 

I feel this same connection to you too Ginny.  Buddha or somebody says that we always live our next lives with the same people that we lived with in a prior life.  they might be our Mother in one lifetime, and they might be our child in the next life.  And this might be why we feel stronger connections to different people.  I would really like to have my own mother as my child next time.  Her mom died when she was young, and she missed her so much.  I would live forever just to give her that time of not having to miss her mother so quickly.

Please take care Ginny, and keep us updated when you feel up to it.

I have no prior experience with dialysis Judy.  Do not know what to say to encourage you at this time.  But i can and will pray for you.  I believe prayer works.  don't know why it works, but I believe that it does.  Maybe we have a spiritual connection to each other as well as a physical one.  Maybe our spiritual connection is even stronger than our physical connection.  In spirit we could travel to a great many places.  maybe we really can touch each other, and give to each other, spiritually.  This would explain why we can be so close on this forum, even though we have never met face to face.

Hester

Posted 10/31/2008 4:18 PM (GMT 0)

Gin,

   I pray that my book will bless you.  I started dialysis in the hospital in September and now am going 3 days a week to an outpatient clinic, for 4 hours each session.  I am trying to get myself in shape for a transplant.  Please know that you will be in my prayers.  I'm so glad you had a talk with your mother and she understands;  or is at least making an effort to understand.  I know on the other side of this situation you will be okay and probably even more of a help to others facing similiar situations.  (((((((((hugs)))))))  JUdy

Posted 11/1/2008 6:17 AM (GMT 0)
Judy,wishing you the best and praying for you!

Ginny- Yeah, you need to take your pain meds, they probably help us more than we give them credit for. I was on the fentanyl patch for over a year and quit it with the onlyside effect an increase in my restless leg, wich was fixed by increasing my klonopin. I was on stadol for six months and quit, it was extremely strong, stronger than the fentanyl. I was in a ton of pain before my hystero and couldn't get an emergency surgery due to my liver. I was told stadol was not physically addicting and I quit it no problem, not a single problem.

Compared to what we go throuh with illness, I feel like any problems quitting medidine is minor and there are facilities and doctors to nurse you through it with other meds to help.

Two meds I personally avoid are Oxycontin and Methadone because when I was in the hospital I met people on them and actually have one family member who isgoing through a horrible time trying to get off methadone her doc prescribed for her and met another who nearly died when they tried to takeher off in the hospital. Oxycontin was the other one that people had trouble with. So I just stayed clear of those. I asled the doc there andhe said they were the worst in his book.

But I wouldn't worry. they wouldn't gve it to you if theydidn't know for sure you'd be okay and they could deal wih any problems easily.

Reading the info behind the Low Dose Naltrexone experimental treatment probably confirms why many of us feel almost healthierwhen we take our pain meds. You might want to take apeek if you havent.

I hope that your ovaries are giving you enough hormones I wanted to keep mine, but it turned outI had Polycystic ovary and it endedup being bad andthey told e that the ovaries were not producnig hormones. So when I got them out I was able to go on a straight consistent dose of estrogen and that made me realize that my ovaries hadn't been working for a long long time and I felt much better. If I had kept them I wouldnt have gotten the estrogen replacement and I'd e assuming that they were working and feeling like crap, tired, gaining weight, etc. I think hey have bloodtests to be ure they are working.

Since you will be starting the Neurontin after your hystero and your hormones may be shifting around, be careful of getting depressed on Neurontin. My son nearly killed himself on it, so be careful if you have bad side effects. It's really an antipsychotic/antiseizure medicine, not a pain killer, but it works on some cases of neuropathy, those most I know have disontinued it after a few years, though they may still take lyrica (a neurotin type drug formulated for neuropathy). It makes you not care,you feel the pain, you just don't care, other things are more important, that's my experience and my mom's. Geting off neurontincan be really difficult and I've seen people with permanent undesireable mental changes thatwere being weaned off it in the hospital and they were scary people. One had developed serious liver disease from the medication after a number of years, prompting him to have to be admitted and weaned off. Other's checked themselves in to be taken off. It's just a very strong drug that permanenly changes the way you nervous system works, which is good for some people. Just not all. My mom had trouble getthing off it but still takes lyrica. It helpedwith her burning feet, and they were reall bad, and it seems towork really well for this type of neuropathy that is really severe. I had another friend who went off it, itorked at first but caused undesireable personality changes and then severe depression on quitting that caused her to make some bad decisions and end upjobless then homeless.

Me, I stick to hydrocodone, klonopin, and ultram. I have used tizanadine with some success as well. Coudl not take lyrica or neurontin.

Take care and be careful I'm praying for you and though a worrier, I know you will get through this with flying colors ad make the decisions that are best for you following your docs advice. I just would feel bad if I didn't warn you that there is risk, its not a miracle drug, and it can be very dangerous--there are law suits out and I almost lost my son to it---and whie it works for a given set of people, it is very widely and somewhat casually prescribed and not as safe as one might assume given how easily it is handed out. Patients just needto know about the possibilities and the risk vs benefit. My son went nuts and tried to commit suicide after less than two weeks on the drug, and had seizures from it, wetting himself. He's being evaluated for autoimmune nervous system problems.

Will pray for a successful surgery and sorry to be so negative trying to give you the other side of things so you are informed. Sorry soglum and hope it works for you!!
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