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    Old 08-16-2010, 10:32 AM   #1
    Moldova
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    Thank you Jenny for your help...

    Dear Jenny,

    I read posts on this board and see that you are here for everyone: to help, to advice, to share.... Not every board has such carrying person like you.
    I just want to say big Thank you for everything you do for others.

    I myself just made an app with eye Dr. - thanks to you. It makes sense about eyes inflammation causing pain, floaters and blurry vision. I had check up last year, but Dr told me that floaters is due to age (I was 54). Well, maybe now, with all my diagnoses, he will look at it differently.

    And another thing: I was looking all over the place, asking people how do they feel their RA pain. I have so many other issues and want to make sure that pain I experience is really the one related to RA.
    You just said it; when you described this "deep to your soul, eating your bones pain" and I would add" feels like something alive bites pieces of your body every second of your life" - nobody could say better then you just did.

    Thank you again!
    Feel better, hope next day will bring you some relieve.
    Moldova

     
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    Old 08-23-2010, 12:08 PM   #2
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    Re: Thank you Jenny for your help...

    Thanks Moldova....sorry I didn't respond right away. Went into anaphylactic shock after my allergy shots last week and have been sick since. Just starting to breathe easily. Never had it happen before and it just hit within 5 minutes of my shots....I'm pretty sure it's the dust mite shot.

    If it's not one thing it's another...right? Let me know what happens with the eye doc.

    gentle hugs...........Jenny

     
    Old 08-23-2010, 02:24 PM   #3
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    Re: Thank you Jenny for your help...

    I am so sorry to hear this; I was wondering how come I don't see you here lately. This must be very dangerous, I am glad you are doing better now. Wow! You right: when it rains it pours...

    I went to see my eye Dr. He said that no sings of RA in my eyes. Blurry vision, pain behind the eyes floaters may be just due to age (56) or some other unknown cause. But he sees nothing to worry about. I was so happy to hear this.
    Not only that; I think i mentioned last year that I was Diagnosed with Optic Neuritis and this is why they start searching for MS. But right now, he said he doesn't see it; this also could be b/c I am for couple years now on different treatments for RA and other conditions, but problems can appear only when flares happen. Who knows?
    I appreciated his honesty, he said that a lot of symptoms people experience still with question mark, they don't have the answers to all of them. But whatever he sees now - doesn't relate to any of my conditions.

    I am pretty sure if he would see me before my treatments when I was in a really bad shape, he might see something. The fact that inflammation can come and go is a good thing, at least it goes away too!

    I maybe shell be quiet, but I want to share with you anyway: Humira is doing good for me right now. I can use my hands, I can lay down in bed and not suffer from so much pain in my neck, arms, elbows, etc. I wish my other (spinal and nerve pain) pain would so as well, but I can't be that greedy. Thank you God for at least some relieve. Now I have to pray that it will last for at least a year.

    How is your medication works for you? Do you feel any relieve? Today was my 6th shot (she switched me to every week shots) and I can say, I feel pretty good despite that other strong pain and symptoms. Life is good, sweetie, if we still may have ones in a while some relieve, right?

    Please, feel better! Thinking of you...
    Moldova

     
    Old 08-23-2010, 06:09 PM   #4
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    Re: Thank you Jenny for your help...

    My Ra is doing okay right now. I've gotten on a good combo...Orencia and 17 1/2mgs of MTX that I inject once a week. but I am having a subtle flare. My vision is "rolling" and when I read, the print can change size above and below the line I'm reading. Very hard on the eyes.

    My eye doc sent me to a neuro-ophthalmologist to try to figure out the eye problems. He did tons of test but diagnosed it when I started Orencia and it went away....then I tried stopping Orencia for 2 months and it came back...and then went away again after I re-started it. That was how I got diagnosed...not by testing but my experimenting. Now I know when I'm having a flare as the eyes go first.

    And my back pain has mysteriously disappeared but an MRI showed severe arthritis. I know with my knees, when the arthritis got to stage 4(the worst) I had worn off the nerve endings so it didn't hurt as much but my knees were horribly unstable. So I think the same thing has happened to my lumbar spine....wore off the nerves. So I don't hurt but my back has become very unstable. Waiting for neurosurgeon to decide of it needs surgery. My neck is already fused from C3 to T1 but I'm growing osteophytes like a garden of veggies. All over the place! Not much pain but if they keep growing they way they are, I will be.

    I'm glad your eyes are okay but do watch it. If they get worse, don't hesitate to see your doc and tell your rheumy.

    gentle hugs.............Jenny

     
    Old 08-24-2010, 08:03 AM   #5
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    Re: Thank you Jenny for your help...

    Thank you Jenny for the replay...
    I am glad your treatment works; how long are you on Orencia? I was on Orencia for a year total. First 8 month it was helping me and then for the last 4 - I started to develop symptoms my RA Dr did not like at all and stopped working for me. So she switched me to Humira.

    My second surgeon at *** in NYC (DR. Camissa) told me once: "I am a surgeon, but I am a conservative one. I operate only if I 100% sure I can help that patient. I don't do exploratory surgeries, I don't do surgery if I know it will NOT make any difference. Only because MORE SURGERIES ONE HAS ON SPINAL CORD - WEAKER IT BECOMES, LESS STABLE IT BECOMES. IN MOST CASES SURGERY IS NOT AN ANSWER".

    Jane, I was so happy to hear this from such a "Star" of a Doctor. He puts together injured big sports people (he has their pictures in his office). I love honesty, in surgeons especially. Because it not a secret that many of them very "knife happy".

    I have pretty big syst in my cervical area of the neck. If I talk on a phone for example and my hands are busy, so I need to bend my neck - I know pain will be bad and I will not sleep. But since I get more good days with it then bad days - he is not operating on me right now. He says, I should cherish that I have more good days with it, because after the surgery, I may have more bad days - then I am in trouble.
    Same happened to me with my previous spinal surgeries: I am 100% more worse after surgeries then before and nothing can be done at this point, especially after I developed Arachnoiditis as complications from invasive spinal surgeries. Surgeries lead to more spinal cord scarring, but when you already have this (ARC) - you may become paralyzed very fast.

    I had 2 right knee surgeries, first one at age 24. I need the whole knee replacement for many years now. I went for second opinion to a knee Ortho at *** and he said to me that while my knee would do better after replacement, recovery is long and hard. A person who has such major problems with their spine, weak legs/feet and nerve damages in them, may develop worse problems in these areas. Since my other knee is not good either (hardly have any bone left; meniscus gone long time ago), I will put pressure on this sick knee which will make matter worse. He said the following: when your core is in not well, knees never can be right, so the replacement may not be a success.
    It means: live with it. So I do.

    So with all of this, I am a candidate for any spinal surgeries only if my hardware brakes or something else brakes in there. Othewise, despite the severe pain, wheel chair and walker/cane in better days, big changes on areas of surgery (even simple surgery on bones, leaves arthritis there) - I have to live like this and cherish every day.

    I learned one thing from my "spinal" ordeal. Humans are stronger then we think; we get used to everything, pain included. Would you believe that my mom's joints big and small all crippled, she lives in such severe pain since early 40th. Meanwhile, she never had bone surgeries, even though her spine has not even one space in between and she can't bend at all. She can't have a cup of tea in her hands, and she never had even one pill of opioid. Because in Europe, they don't do what they do here and also, opioids there not given to outpatient patients. After serious surgeries they may give you for a day or 2 and then you on Tylenol or Advil, this is it. And guess what? She went to work all her life, she hardly ever complains, she can't lay down in bed for years already, so at night she moves from recliner to a couch and back... And all her pain medication is not stronger then Ibuprophen... How about that?

    This is why I get upset when some Doctors here give opioids left and right (meanwhile some really ill patients have problems to get Rx for their pain from some doctors). My hubby had his tooth extracted, goes home with Rx for 10/325 of Percocet. Is this nonsense of what? Of course he did not need it, he was OK with Tylenol. And so many other mild procedure after which people would be OK without PK,meanwhile they get Rx from their doctors. This can't be good.

    You are right about checking my eyes when my RA flairs. Now when I think about it, this is so true that my eyes get worse when all my body gets worse. I will definitely follow your advice, dear person.

    Love and blessings to you,
    Moldova

     
    Old 08-24-2010, 02:17 PM   #6
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    Re: Thank you Jenny for your help...

    Hey...I know Dr. Camissa! I saw his partner, Dr. Sama. He went over me pretty thoroughly(I saw him for a second opinion) and then told me I was better off with my doc in Boston.....he knew him well and thought he was the best there was. So I went back to Boston.

    I'm not on anything stronger for pain than ibuprofen and I rarely take that...upsets my stomach. I usually take Tylenol. I grew up in Canada and you could get pain meds over the counter and I got accidentally addicted to codeine as a teenager. Once off I vowed I'd never take pain meds again. Then I developed allergies to both oxycodone(no Tylox or Percoset or any of those drugs) and morphine. So I take no pain meds unless I'm a 10.

    My spine is actually pretty good. My first surgery was a brand new one that I think my doc invented and it decompresses the spinal cord without fusion. But the bone grafts broke 3 months later leading to subluxations of 5 vertebrae(partial dislocations). My neck was badly injured as a kid due to child abuse but I didn't remember and no one in my family ever told me until after the 1st surgery collapsed. Had he known, he never would have attempted the surgery. So he went in again and fused the entire neck from the back(other surgery was from the back too) and all I have is 2 titanium rods and 2 screws in each vertebra except for 1....too badly injured to take screws without the worry of breaking. And I was lucky that he was working with an experimental bone putty instead of grafts and used that this time and it has been great. The fusion is solid with no overgrowth problem but my bone is still making oodles of osteophytes. Filled up the spinal canal already so he's watching it.

    As for knees....I hurt my knees when I was 14 and as part of the abuse problem, I wasn't allowed to see a doc(my mother was a sick person...hard to explain why). By the time I was able to get my ow medical help, I had bad problems. I've had 14 knee surgeries(8 on the left and 6 on the right) and both were replaced 11 1/2 years ago at age 47.

    I had to do a lot of PT prior to surgery but it was worth it. And after the 2 spine surgeries, I had months and months of PT and I still do the core strengthening exercises. You can do them lying in bed. It really is life changing to get the areas fixed and worth the exercise and pain to do it. Made me into a different person according to my family. Whole personality changed when I was out of so much pain.

    And I agree with you on the issue of giving pain meds. I can't believe there are docs giving people with fibromyalgia Fentanyl patches for pain. I've never had to use one.I know fibro is a pain disorder(I was diagnosed with it too as are most people with arthritis)but it doesn't kill you or even cripple you. But Fentanyl can kill.....it's like these biologics....why give a drug that can kill to someone without a disease that kills. We take biologics knowing they can cause cancer but we also know Ra can kill us so we do a balancing act. But people with fibro will never die from it but they take a drug that can easily kill if they take too much. Astounds me!

    But let me tell you something interesting that one of the docs in my neurosurgeon's office has found out. He started doing a research study to try to find a gene for degenerative disk disease. So he got full genetic profiles on all his patients and followed them through surgery and well beyond. He didn't find any genetic markers for DDD but what he did find was incredible. The people who did well after spinal surgery all shared a very similar genetic make-up and the people who didn't do well and continued to have long term pain after surgery, ether the same level or worse, also had similar genetic make-ups. His research is now being repeated at 12 other spinal surgery centers to see if it holds up. If it does, it may be that one day they can do a genetic test and know if you'll be successful if you have surgery. Could save a lot of people from surgery that won't help. Why it won't help is the next part of the equation. Perhaps they have a gene that tells the nerves that are compressed to never recover...who knows. All I know is that I have almost no neck pain and now my back pain has disappeared but that is from arthritis. They removed all that from my neck and I did fine.

    If I need spine surgery on my lumbar, I will do it because I know my doc is ultra conservative and very, very good. If the docs at *** said I was better off with my doc in Boston, he must be VERY good. So far so good.

    And my next joint replacement will probably be hips. The right one keeps getting caught on a bone spur. But that is years away.

    Consider doing the exercises to get yourself strong enough to under go surgery. It is so worth it. Fixing my knees settled down my lower back and slowed the hip arthritis. Now fixing the neck has given me very good posture and is helping everything and given me back my hands. I was close to paralysis with my arms and legs when they operated. Hands and feet were numb, walked like a drunk and arms were very weak. Some days I couldn't get my thighs to move forward. I'd be paralyzed by now if I hadn't done it so I am conservative with surgery and so is my doc. Heck, my knees were stage 4 arthritis out of 4.

    Anyhow, I've rambled on and on today but getting to know you is such a pleasure. You are one of my "gem" people who I can count on to always brighten my day.

    Thank you and giant gentle hugs.................Jenny

     
    Old 08-24-2010, 11:51 PM   #7
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    Re: Thank you Jenny for your help...

    Yes, I also would like to thank Jenny. I've been reading here for about a month and have learned a lot. This is my first post. I still haven't gotten up the energy to post my story. I am at the beginning and my problem is not as harrowing as others at all. However, it does appear that I'm heading for a cervical fusion at two levels due to degenerative disc disease.

     
    Old 08-25-2010, 07:24 AM   #8
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    Re: Thank you Jenny for your help...

    Ahhhh...another New Jerseyite. Moldova is there and I was born in Jersey.

    There are a lot of people on the Spinal Cord Disorders board that are dealing with cervical problems including one guy in NJ who just had an artificial disk put in. Come on down!

    But you are also welcome here anytime. A lot of people here dealing with it but not at that surgical point so far.

    If you have your MRI results and need any interpretation, let me know. I'm getting good at it!


    hugs..................Jenny

     
    Old 08-25-2010, 03:21 PM   #9
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    Re: Thank you Jenny for your help...

    Hi Jenny,
    I did not plan to post today because I don't feel good at all: I win myself down from Lexapro, just started and let me tell you - I feel very sick with severe headache 24/7. I cant believe that I need not less then one month to be done with this medication; I don't know if i can handle this terrible headache for so long.

    I read and was really upset. If you dont mind telling me what do you mean you been abused? Abused to the point of damaging your body??? This makes me very angry and upset, I cant stand learning that anyone can hurt a child.
    Dr. Sama is an excellent surgeon as well, he was trained by Dr. Camissa. I was told that they have such high reputation all over the world, because Dr Camissa would work only with Doctors who trained by him and they matches his criteria of an excellent surgeon. I am glad you heard from them about your Boston Dr. This means a lot, no doubt.

    Janny, you poor soul - for such short life and already so many damages! My heart goes out to you, really...
    But what I am happy about is that you don't have to take your PK, you save yourself many years of life ahead of you. Good for you, girl!
    When it comes to genes and spinal surgeries... I feel that success of this type surgeries depends on your spinal ortho as well. You have to be lucky also. Many of them claim that they know what they are doing, meanwhile, we know the opposite. I read some stories, include my own experience and feel that pain after surgery,healing after surgery has to do how good it was performed and if Dr was good enough not to leave you with dropped foot, Arachnoidities, a lot of nerve damages not only in your legs and feet, but also lower body organs... Like I ended up.

    I been many times in Dr Camissa's office. Besides meeting there many celebrities (some of them fly from CA and Mike Doglas with his kids and wife fly from Bermuda to have his knee surgery done by my knee surgeon Dr.), waiting for a long time in waiting area helped me to learn something from people who love to talk while waiting for their Doctors.
    I couldn't believe how many people I met there during all these years from N.J. - all of them came to Camissa for revision surgeries. First time they were screwed up (same as I was) and came hoping for a miracle. But what was done - is done for good unfortunately. Just the fact, that people went to him to fix them, makes me so sad...

    Anyway, I have to say night night and hope tomorrow my day will be easier.
    Blessings and gentle hugs, Moldova

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    Old 08-25-2010, 06:55 PM   #10
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    Re: Thank you Jenny for your help...

    Hi Moldova.....and thank you for the sympathy. And yes, my parents abused me. Broke bones that were never set and damaged my back terribly. Was almost paralyzed by abuse....stomped on my neck and left me lying on the floor unable to get up or walk. She(it was my mother) just left me there and I slept on the floor all night and by morning I was slowly able to get up but had trouble for months walking...I was about 3 or 4. My siblings remembered it but never said a thing to me and my mother died when I was 21. They finally spoke up after I started to remember it after my neck broke.....would have been nice had they told me before the first cervical surgery. And no, she never paid for her crimes except that she died a miserable death due to cancer.

    My doc(his name is Dr. Eric Woodard) spends all his time fixing what other docs mess up....just like Camissa. But Camissa and Sama are orthopedists and Woodard is a neurosurgeon(spine only). When Sama told me I had one of the best in the world, I was relieved. I knew Sama and Camissa were but had never heard of Woodard but knew the hospital was tops. It made me happy to know he was that good.

    And I agree with you that the excellence and experience of your doc is probably the biggest factor in determining the outcome of spine surgery.

    I hope your headaches let up soon. going off any drug can produce so many side effects that sometimes you just give you and go back on. I hope this doesn't last long. I just came back form the pharmacy because I had to get a bunch of Epi-Pens so I can take one to my doc's office each time I go for allergy shots. Getting cheap.....make me bring my own drugs in case I react!!!!! Sheeeeessshhhhh!

    Oh well, I'm doing some painting tonight....making some trunks for my granddaughter that I'm going to back with "dress up" clothes so she can play and pretend. I'm painting them like the pond in her back year......fish and frogs and flowers and a waterfall......her mom suggested I do that so it can be used for a second child that might not be a girl(they are trying...still no word yet). Fish and pond with rocks are done but next comes her favorite...the frogs! The lid will have lots of butterflies since they have a whole hedge of butterfly bushes.

    Better get back to my froggies

    gentle hugs for a pain free night.................Jenny

     
    Old 08-25-2010, 11:47 PM   #11
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    Re: Thank you Jenny for your help...

    Hi Jenny,

    Thanks. I will post the results of the two cervical spine MRI's that I had on the spinal cord message board. The results between the two were slightly difference, and it will be appreciated to get input. I also got my second opinion from Dr. Cammisa and feel fortunate to have been able to see him.

    Though not to the horrific and extreme extent you suffered, I too was a victim of childhood abuse at the hands of my mother, though I did not suffer lasting physical damage. My father was an alcoholic, but my mother's actions towards me were inexcusable. I seemed to have borne the brunt of her anger and frustration that my siblings largely escaped. It was rather arbitrary too. She could be very nurturing. When she snapped, there was little to no warning. I remember more than once walking past her chair in the kitchen to get to the living room. No words had been exchanged. Everything was seemingly fine, and yet suddenly I was being pulled back into the kitchen by my hair to be attacked. Out of the blue, she could be quite psychotic and severe. There was also a level of neglect. When I was three and a half, she used to go shopping and leave me to baby six my six month old brother because, as she said later, "I was trustworthy." Well, I survived and have done okay for myself, but I do think that I still bear some psychic wounds. I do think we survivors should share publicly, as maybe it will help someone in the present.

    Sincerely,

    "Hale"

     
    Old 08-26-2010, 07:00 AM   #12
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    Re: Thank you Jenny for your help...

    Jenny - grandma? Is in this the best? I have 5 years old girl and 2 years old little hooligan - they are the light of my life, my happy pill. When I see them, I forget about all my issues and problems.

    Honey, almost unbearable to read about abuse. Hard to even imagine that human (not to mention a mother) can hurt a child this bad. I wonder if she had all her marbles in it place. Did you to talk to your dad about it? Did she abuse other siblings or you only? Breaks my heart to know that you have to live this life with such pain and question: why? I am so very sorry!!

    Yes, your Dr has excellent reputation. I read about him a lot on Internet when I was doing my search. He is an author of some medical literature related to his field, very well known Dr. God Bless him for taking such good care of you, my friend.

    Last night I was ready to go to ER. I had never in my life experienced such a headache like yesterday. No matter what I took - nothing worked. I am talking about my PK - Oxy and Nucynta didn't even touch the pain. I am calling today to ask my cardiologist if this is normal when you go off this medication. I hope it's normal.

    Feel better please
    Hugs, Moldova

     
    Old 08-26-2010, 02:50 PM   #13
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    Re: Thank you Jenny for your help...

    How are you today, my friend? How's the headache? Did you reach your cardiologist?

    Sad to say but my dad was an alcoholic who was rarely home. Didn't care what my mom did and I don't think he even knew. And my mom....I suspect she was as abused as a child as what she did to me only it was worse with me. I got it from my dad at times and my siblings...all older than me by many years. I was "the mistake". Dad died 4 years after mom so there was no talking to him either. But I do talk to my 2 brothers about it. My sister insists most of it didn't happen....lives in denial because she abused her kids too. Her oldest killed himself and her youngest has been in therapy for 25+years(she's almost 70).

    But in a way I'm glad I was the worst because I also have the guts to stand up to them and the rest of the family and I have actually been on national TV and blew the secrets of the family wide open. Called all of them and told them to watch and then was called every name in the book and shunned by my family....but it stopped. They knew everyone was watching them and they had no choice but to stop. Now however, we are all okay with each other...but they all live on the west coast and I'm on the east...and I'll stay here. We get along well provided we keep at least 2000 miles between us.

    But one thing I do know is how the stress of emotional problems can make my arthritis pain worse. If it's joint that got broken, it hurts more when I remember the abuse. I have to actively "not remember". They told me at *** that surgery to repair injuries due to abuse generally brings back the original trauma and they now routinely do psych screenings and have a whole team that deals with PTSD issues with surgery. I know my hospital had a psychologist at my beside when I woke up. *** is a leader in treating PTSD injuries.

    Hey, if you can find the links to any articles by my doc, could you send them too me by PM? I'd be interested in reading them.

    I hope you feel better today. At least the east coat has some sun today.

    gentle hugs to my Moldova...............Jenny

     
    Old 08-27-2010, 03:42 PM   #14
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    Re: Thank you Jenny for your help...

    Dear Jenny,

    thank you so much for sharing this with me. I will write more when I start to feel better. I am so sick due to going off from Lexapro. I never thought it can be this bad and when I heard that for some people it can take month and month - makes me very sad and upset. I cant believe I let this happen to me. I never had any depression or any other mental disorder, why did I let my cardiologist put me on Lexapro due to my heart palpitation? I am more upset with myself that I never checked this drug, trusted him completely.
    Anyway, I have to pay for my stupidly now.

    All the best to you sweetie.
    Love Moldova

     
    Old 01-01-2011, 02:51 PM   #15
    trouble222
    Junior Member
    (female)
     
    Join Date: Apr 2007
    Location: Middlesex,vt USA
    Posts: 28
    trouble222 HB User
    Question Re: Thank you Jenny for your help...

    Hi
    Its been a while since i've been on. My PMR is starting to go away, thank goodness, and i'm off of prednisone but my fibro is there. Do any of you have weak legs and weak hips? I've gotten so I do not dare go down stairs that do not have banister as I feel very insecure with the first couple of steps. My PT told me I have no strength in my hips. Is that caused by fibro or am i just old. Lord I hate that word. OLD.lol
    Any info would be greatly appreciated.
    Anna

     
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