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BS: No where else to go...
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Subject: RE: BS: No where else to go... From: Stephen L. Rich Date: 20 Apr 02 - 01:18 AM My thoughts and prayers are with you and Amy. Near as I can tell you've already done the most reasonable thing that one CAN do in a situation like this. You came to friends. After sifting through all of the medical contacts which others have sent you the only other thing that you can do is what you were already doing -- what you've always done as a parent -- you are there for her. We are here for you. Stephen |
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Subject: RE: BS: No where else to go... From: GUEST Date: 19 Apr 02 - 01:35 AM Robert Frost - in Death of the Hired Hand made the same statement.
Essentially, home is where you go...when there is no place left to go. |
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Subject: RE: BS: No where else to go... From: CapriUni Date: 23 Mar 02 - 12:42 PM This thread is getting long, and the subject has evolved considerably since it began (thank goodness!). So I posted a new thread, here. |
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Subject: RE: BS: No where else to go... From: katlaughing Date: 23 Mar 02 - 12:15 PM Anna, thanks for the update. It boggles my mind that the wealthiest country in the world fails so utterably in healthcare for its citizens. How in the world can the drug companies dare to charge so much for something so desparately needed? I know all of the usual answers; it just makes me mind reel to know they are allowed to do so. It is outrageous and unconscionable. Sorry for the rant, it just makes me very angry when I hear of people who have to pay more than most home mortgages, etc. for drugs, let alone healthcare! Lots of love and {{{{{{{HUGS}}}}}}} kat & rog |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 23 Mar 02 - 11:51 AM Thanks for the links, Jeri. I noticed on the HealthTalk page it had an article by one of my second opinion doctors in Atlanta. As a matter of fact, he was one of the early users of MRI way back in the 80's! |
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Subject: RE: BS: No where else to go... From: Jeri Date: 23 Mar 02 - 11:37 AM Some clickies: Nutritional Info (mgarvey) Betaseron (Berlex) page HealthTalk pages about MS The Betaseron Foundation (Betaseron is interferon beta-1b, Avonex is interferon beta-1a) Avonex website (Dharmabum) Site is cookie-intensive and crashed my browser - your milage may vary. |
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Subject: RE: BS: No where else to go... From: Celtic Soul Date: 23 Mar 02 - 10:12 AM Serves me right for not reading all the way through before posting... I have heard of alternative therapies for MS. This subject was brought up in another thread. I am sure someone more Mudcat literate would be able to find it. But there are some alternatives to the usual medicinal approaches. Just a thought. And the best to you and yours. |
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Subject: RE: BS: No where else to go... From: Celtic Soul Date: 23 Mar 02 - 09:51 AM Hon, it's happening to you too, so don't feel so bad about the opening comment. Mothers are tied by the heart to their kids, and it's natural for you to feel the pain ans fear your child suffers. It is also natural for you to want to help fix it, no matter *how* independent you raised her to be. Your daughter needs you, no questions about it. No matter how old we get, when we're afraid, love from a Mother can still help. As to the problem; I say go guns a-blazing and do *everything* within your grasp. A 2nd or 3rd opinion is not outside of the normal protocol in medicine, *especially* considering the severity of the symptoms. However, as the Mother of a grown child, all you can do is strongly suggest a course of action, let her choose, and then be there for her emotionally. My thoughts and prayers go out to you...let us know how things go. |
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Subject: RE: BS: No where else to go... From: Hollowfox Date: 23 Mar 02 - 09:43 AM I can't offer any advice, but I can put in a token folkloric observation, just to make the thread "folk", if not "musical".*g* There are a lot of tales where naming the demon/adversary is the first step in defeating it. At least now you know what you're fighting. |
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Subject: RE: BS: No where else to go... From: Dharmabum Date: 23 Mar 02 - 12:03 AM Luckily,my insurance covers 100% of my Avonex cost. It also is about $900.00 a month. Check with the Avonex website that I referred to earlier in this thread. Seems I remember something about them offering or referring to financial aid. Anna,When I first started on Avonex,I was sent a brochure kit with a video. I'm sure Amy will get something similar when she starts on her meds,but in the meantime,I'd be more than happy to give her/you mine. Email or call if you're interested. Please remember,There is support for everyone effected by MS. My kids were pretty small when I was diagnosed.And with the help I found in local MS support groups, I found ways to help my kids to understand the changes that were going on in all of our lives. Best of thoughts for everyone. Ron. |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 22 Mar 02 - 10:03 PM Anna Dear!!! Please forgive me, I just thought of something that I had forgotten about. It should set your mind at ease...I wish I had remembered it earlier. There is a Betaseron Foundation to assist people who need help paying for their drug. They paid for mine for almost a year when the #$%^&* insurance company wouldn't pay. It's run by the folks from the drug company, Berlex, which makes Betaseron, and they are great people to work with. I assume there is a similar group with the drug Avonex. I would never have heard about it except that a technician in the doctor's office mentioned it. The MS Society probably has info for you. The last thing you and Amy need to worry about is the #$%^& insurance company. There is a network of folks like me who can help you fight 'em. {{{{{{{{{{{HUGS}}}}}}}}}}}} |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 22 Mar 02 - 08:52 AM Anna, that insurance battle is one we all go through. Mine has been an absolute nightmare! Each state is different, and after lots of turmoil in Kentucky (legislators know something should be done, just not sure what) I was one of 50 people in the entire state over a year ago that got on a program that the legislature provided. It's probably changed now, it seems to change every year. My Betaseron costs $900 per month, so the insurance company just raised my rates to that. On the new program it's less than that, forgot just how much. But the MS Society has lots of information and counseling for any problems you run into. All this depends on your state, unfortunately. Also, the MS Society has a program to register every person diagnosed with MS. The name of the program is "Every Person Counts." It's important to have large number of people with a disease in order to get research dollars. Right now the MS drugs come under the orphan drug act. Also, all the AIDS and Spinal research helps. {{{{{{{{{{HUGS}}}}}}}}}} |
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Subject: RE: BS: No where else to go... From: annamill Date: 22 Mar 02 - 08:02 AM Art, she is taking Solu Medrol and yesterday she was talking strangely. I haven't heard her use any bad language though ;-) She is very hungry and Robert is having a hard time keeping her away from "Comfort Foods". Today is the last day of steroids. I'm not sure when she starts the Avonex. That stuff costs over $900 per 4 weeks of shots!!! How do people afford it?? Her insurance will only pay $500 of it. I'm not sure how she plans on handling the rest. I will help as much as I can, but there must be some sort of help out there. She's in touch with the MS Society and Social Security. I suggested perhaps some sort of governmant help. Any other suggestions? Thank you. Love Anna |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 21 Mar 02 - 11:09 PM Art, you reminded me of two things I had totally forgotten. I also felt like everyone around me "just doesn't get it." And I was so hungry, I ate the parsley and orange rinds that came with my meals for decoration. When you get time, Anna, let us know how things are going. {{{{{{{{{HUGS}}}}}}}}}}}}} |
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Subject: RE: BS: No where else to go... From: Art Thieme Date: 21 Mar 02 - 10:09 PM Whew, I can't relate to what Mary In Ky. is saying. I had just 3 days of Solu Medrol at Mayo Clinic. One bag introvenously, just ONCE A DAY. Other than using some inapropriate language with a nurse who "just didn't understand" I thought, and wanting to eat everything in sight, I can't recall any terrible side effects at all. Art Thieme |
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Subject: RE: BS: No where else to go... From: annamill Date: 20 Mar 02 - 07:58 AM Amy loves fish! She is left alone at night because Robert works at night. Last night I had a class I had to go to and my husband told me she had called. Thank you for all the hugs. I told Amy about all the good thoughts and hugs you're all sending her and she is very grateful. I pass on all the advice. She told me to thank you for her and as soon as she can see she'll come in and thank you herself. Love, Anna
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 19 Mar 02 - 11:08 PM {{{{{{{{{MORE HUGS}}}}}}}}}} Tomorrow (Wednesday) should be her third day of a five day regimen. I'm not sure of her schedule, but I had the IV's three times a day. I could taste the meds after about 45 minutes. Butter mints helped! By the third day I was so loopy I volunteered to help the doctors and nurses when an emergency involving the police happened in the hospital! I remember them looking at me suspiciously. They also took my chart off the door after they caught me reading it. Then there were the consults with physical therapists and speech therapists...totally useless in my case...but I tried to keep an open mind. Amy will laugh a lot now. And in my opinion (not the opinion of many others), she will speak from her heart. The things she says may not make sense, but you know her and can interpret what she means if you really, really listen. Of course, you've been warned of the possible depression to come after tapering off the steroids. You, Amy and everyone around both of you are about to venture into uncharted waters. GODSPEED. {{{{{{{MORE HUGS}}}}}}}}}} Mary |
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Subject: RE: BS: No where else to go... From: GUEST,mgarvey@pacifier.com Date: 19 Mar 02 - 10:21 PM please do a google search under MS and fatty acids..also probably MS and leaky gut..or autoimmune and leaky gut...Follow the research of Dr. Mary Enig...a fat researcher...I don't know if she gets into MS or not but general health for sure.. None of us should be eating any artificial margerines or trans fats...and people of Irish, Scandinavian and Native American ancestry need fish because they don't metabolize certain fatty acids...this all might be related to MS...so see if you can follow the trail... here is a place to start.. http://www.direct-ms.org/nutritional.html certain things won't hurt, like eating more fish, so I'd urge her to do that... mg |
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Subject: RE: BS: No where else to go... From: Art Thieme Date: 19 Mar 02 - 09:33 PM Anna, Is this steroid Solu Medrol? That one sure did help me the first time I got it. Art |
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Subject: RE: BS: No where else to go... From: Rick Fielding Date: 19 Mar 02 - 10:42 AM Dear Anna, I just want to lend my voice to all those who understand just how important "anecdotal" advice based on personal experience is. I can't tell you how many times over the last four years on Mudcat, I've been steered in good directions.....from the tiniest (and under the situation you're now dealing with) unimportant music-related issues, to much larger ones with far more serious consequences. I have very little faith in "authority" but a great deal in the wisdom of everyday folks confronting a crisis. Keep hanging in. Rick |
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Subject: RE: BS: No where else to go... From: catspaw49 Date: 19 Mar 02 - 10:37 AM Hey Anna...........Let me cho Sinsull's advice: "Screw "responsive". You and Glenn take care of each other, do what you have to do for your family, then come back to us when you are up to it. We will be here for you." And we'll be here to listen and provide whatever we can. You and Glenn need to take good care to keep your spirits up. Amy seems to be doing quite well as does her fiance in handling this. My love to all of you. {{{{{{{{{{{{{{{{{{{{{{{{BIG SPAW HUG}}}}}}}}}}}}}}}}}}}}}}}}}}} Spaw |
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Subject: RE: BS: No where else to go... From: Peg Date: 19 Mar 02 - 10:29 AM Best of luck to you and your daughter. My mom was diagnosed with MS in her 20s and it was in remission for many, many years (until her 50s). She was diagnosed with adult onset juvenie dibetes at age 35; still the MS stayed in remission. But she continued smoking heavily and was never someone to take a really active role in her healing; just let the doctors tell her what to do. These days there is SO much more help and medical knowledge about MS so your daughter is fortunate in that respect. But because it is an auto-immune disease, any thing she can do to live a happy, healthy stress-free life will be beneficial: healthy diet, exercise, meditation, yoga, herbs, nature, deep breathing, laughter, etc. Most important that she stop smoking or eating junk food in excess if she does that now. (Most people these days are pretty sensible about this; if they are sick they cut out the poisonous habits). Hope your news continues to be positive. And listen to the folks here who have been through this firsthand!
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Subject: RE: BS: No where else to go... From: Dharmabum Date: 19 Mar 02 - 09:11 AM DITTO, Under the Avonex cloud myself today. Sometimes good things make you feel like crap. Hang in there Amy & Anna. Ron. |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 19 Mar 02 - 08:24 AM {{{{{{{{HUGS}}}}}}}}}} |
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Subject: RE: BS: No where else to go... From: annamill Date: 19 Mar 02 - 07:52 AM Good morning! Mary in Kentucky, I told Amy what you had written about the steroid psychosis and evidently she had been told this before by her doctor and the nurse who gave her the first bag of steroids. All she could say was "My poor Honey" referring to her fiance, who, by the way, is exhausted from working all night and then running around all day. Now he has to deal with a "Chatty Kathy" too. She had her first bag yesterday by a nurse, but now her fiance will be doing the honors as he was instructed. I sure hope he knows what he's doing. Amy was in amazing good spirits last night. ..and people say drugs aren't good for you. ;-) I know she is in for a comedown, but she will handle it, as we all will. She is looking forward to being able to see again. This is what she misses the most. Understandable. Thank you for listening. Love, Ann |
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Subject: RE: BS: No where else to go... From: SINSULL Date: 18 Mar 02 - 10:57 PM Annamill, Screw "responsive". You and Glenn take care of each other, do what you have to do for your family, then come back to us when you are up to it. We will be here for you. Mary |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 18 Mar 02 - 09:36 AM It's me again...I just thought of something else you might want to know now. My family was not told this by the doctors or hospital...a relative who is a doctor told them this, and it helped them tremendously.
RE: The steroid treatment That's all I can think of now. Soon you and Amy will know more than anyone else around you. {{{{{{{HUGS}}}}}}}}} Mary |
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Subject: RE: BS: No where else to go... From: catspaw49 Date: 18 Mar 02 - 08:45 AM Well Anna, we're all here for you to do whatever it is and ask whatever of us. You know that though don't you? Ya' know, this is quite a "Medical Society" we have around here too isn't it? Like kat said, I am honored to be part of a community that includes the likes of Art, Mary, Ron, and Berit and those who have shared their own experiences and knowledge of MS from a very personal level. We have others too with other medical situations who are also quite willing in many cases to jump in and pass on what they have learned or know from personal experience on a variety of "ailments." We have transplant patients, heart, liver, kidney, intestinal, orthopedic, cancer, mental, and other patients here too so that it's really not a bad place to get some support beyond the love and concern we all feel for our fellow humans. People with real knowledge of their own situations who many times are willing to share with us what to expect and what to do. No, we don't replace Docs or anything, but much as I may hate the fact that so many of us have some of these things, it sure is wonderful to gain some firsthand experiences which only adds to the support we get. I mean, I know this isn't a medical forum, but you have to admit we have a lot of medical knowledge (too often learned the hard way) around here and people who readily share to help in the support of what can be so frightening when it first occurs, as most medical problems are. We love you Anna, and I am personally grateful for this community, brough together by song, but bonded by friendship, love, and compassion. Spaw |
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Subject: RE: BS: No where else to go... From: Mary in Kentucky Date: 18 Mar 02 - 08:37 AM Anna, I'm back home now and saw your post. I'm not surprised, but greatly saddened. You have my phone number and address...feel free to get in touch. I really don't mean to keep giving advice, just know that I'm passing on the things that helped me. The MS Society has a series of articles (usually sent to the newly diagnosed) called Knowledge is Power. I strongly suggest you and Amy and everyone around you read these. You will soon feel the comfort and power that comes from a better understanding of all the things going on around you. {{{{{{{{{HUGS}}}}}}}} Mary |
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Subject: RE: BS: No where else to go... From: annamill Date: 18 Mar 02 - 08:20 AM I'm afraid I haven't been as responsive as I should be to my beautiful kind friends, but even thinking about it make me well up. Talking about it really hurts. I'll call soon. I REALLY appreciate all the helpful advice and kind thoughts. We need them. Yes, it's Avonex. She laughs at herself all the time. She's a real trooper. I know she must be scared, but you'd never know by talking to her. At the hospital they gave every test for every section of her body conceivable. They even had a dermotologist in. ??? After it was all done. She called me and said "I have great news Mom!" "I'm perfectly healthy" "It must be all in my head". DId I already tell you all this? Back to work. Thank you again. I need you. Love, Anna |
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Subject: RE: BS: No where else to go... From: Dharmabum Date: 17 Mar 02 - 07:58 PM Just in case you don't already have this. www.avonex.com DB. |
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Subject: RE: BS: No where else to go... From: Dharmabum Date: 17 Mar 02 - 07:41 PM OK, Now we know what it is. Now to learn how to not only fight it,but also live with it. Hopefuly the steroid treatment won't be long term,but it's pretty effective at kickin' the disease's butt. I've been on Avonex since last May.Once a week,self injections.First couple of times Amy will feel flu like symptoms for about a day after.For many people the side effects are less after time. I just feel a bit irritable & run down for about 20 or so hours. MS tip,Have Amy do her Avonex injections an hour or two before bedtime. That way she can sleep through the first few hours of the side effects. I've only had one relapse since the injections (in January)it didn't hit as hard as previous relapses. There's tons of support out there,MS Society,local support groups,etc.I'm sure you've already gotten much of this info.
This is not great news Anna,but it could have been much worse. There will be some really "crappy"days. But there will be alot of good days also. If nothing else,MS has taught me how to appreciate the good days and the really important things in my life. And spend less time worrying over the BS. You've got my number,I'm about an hour and a half away.I'm here if you need something. Ron. |
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Subject: RE: BS: No where else to go... From: katlaughing Date: 17 Mar 02 - 07:37 PM Annadarlin', thanks for taking the time to let us know. Lots of Big Western Hugs for you and Amy. Remember to lean on your friends whenever you need, we'll be here for you. Art, Dharma, Mary, Berit, any others I may have missed, thank you so much for being so upfront and helpful with this and your experiences. I am proud to be in the same community as you folks. In Peace Profound & Love, Kat |
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Subject: RE: BS: No where else to go... From: Morticia Date: 17 Mar 02 - 07:25 PM I am so sorry to hear this.Dunno what our MS sufferers would say butI remember hearing good things about a gluten free diet.My best love to both of you. |
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Subject: RE: BS: No where else to go... From: CapriUni Date: 17 Mar 02 - 05:59 PM Ditto what Amos said: Laughter really is miraculous. And remember: MS can rob a person of a lot abilities, but it can't rob them of their personhood. That's hard to remember in this culture that places so much value on outward appearances, but it is vital. Hang in there, use every resource open to you, drug wise, and people-wise, and don't be discouraged by doctors. (*note: I read once in a magazine for the disabled that doctors routinely underestimate a person's quality of life, compared to the how the patient herself rates it. So focus more on Amy's good spirits than on the doctors' dire predictions for the future). As Roger Miller once wrote:
You can't roller-skate in a buffalo herd |
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Subject: RE: BS: No where else to go... From: Art Thieme Date: 17 Mar 02 - 05:48 PM Hi, Anna, So very sorry. The drug you are referring to is probably Avonex. It is one of the big three drugs which don't cure MS but can slow the onset of exacerbations. You have much to learn and cope with but that is probably best done through the National MS Society. The books and publications they offer are many. Slowly, you WILL get a handle on this sad new reality. Keep in mind, I'm here if you need to talk. I'm best in the morning. Later in the day, I hit a wall and the fatigue takes over. Love to you both, Art Thieme |
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Subject: RE: BS: No where else to go... From: wysiwyg Date: 17 Mar 02 - 05:39 PM Anna, I think Mary and Dharma will tell you, she will most likely have ups and downs, and MANY really GOOD days. ~Susan |
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Subject: RE: BS: No where else to go... From: CapriUni Date: 17 Mar 02 - 05:36 PM {{{{{ Ann & Amy }}}}} I hope the drug slows down the disease, too. Though take heart: every year, drugs are getting better, and our understanding goes further. Where there is life, there's hope. |
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Subject: RE: BS: No where else to go... From: Noreen Date: 17 Mar 02 - 05:32 PM (((((Amy))))) and (((((Ann))))) Sorry, can't think of anything to say, but wishing you both well. Love, Noreen |
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Subject: RE: BS: No where else to go... From: Amos Date: 17 Mar 02 - 05:31 PM My god, my god. Anna, hugs and more hugs from far to the West. FWIW: When the intial shock of this last two weeks calms down, I would suggest you do everything you can to get your girl laughing as long and hard as possible. A |
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Subject: RE: BS: No where else to go... From: annamill Date: 17 Mar 02 - 05:16 PM Hi Friends. Amy has been diagnosed with "Aggressive MS". Not good. She is to start 5 days of intravenous steroids and she will be sticking a needle in herself, once a week for the rest of her life. I have forgotten the drug, but it starts with an 'A' and seems to be the drug of choice for MS sufferers. She seems to be in good spirits and is anxious to start. Right now she cannot see very well, she cannot walk, she tires so easily. I hope this helps slow down this awful desease. I'm sorry I haven't been back to you, but I've been away from a computer and I've been very busy. Thank you all again. Love, Ann |
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Subject: RE: BS: No where else to go... From: SINSULL Date: 17 Mar 02 - 03:59 PM Anna...any news? |
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Subject: RE: BS: No where else to go... From: GUEST Date: 17 Mar 02 - 12:12 AM No it looks more like a pink triangle |
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Subject: RE: BS: No where else to go... From: Mr Red Date: 16 Mar 02 - 09:50 PM Annamill the problem with specialists is they see a problem in the context of their speciality, so if they are confused they inevitably take refuge in their their specialism or reluctantly refer the patient on. I agree, if second opinion givers are preferrable then be with her to take notes, you will be her second "opinion receiver". You will hear, and see different things, he will be busy interacting with her, you can observe him. It is reckoned that 70/80% of human communication is non verbal so read the body language. My thoughts are with you but you need something to do to concentrate your mind on the solution as opposed to worrying on speculations. Hope the above helps. An ex-girfriend asked me to go with her at the consultation with her oncologist about the whole body scan. Not quite in the same league as offspring but I coped very well because I told myself I was going to be no use to her worrying on her behalf, I asked a couple of questions but mostly observed. |
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Subject: RE: BS: No where else to go... From: Amos Date: 16 Mar 02 - 02:36 PM I'm kinda fond of trapezoids, myself -- don't they have healing qualities? Are we gonna have to start a protest movement about geometry bias now? A |
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Subject: RE: BS: No where else to go... From: GUEST Date: 16 Mar 02 - 12:44 PM we need a healing circle |
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Subject: RE: BS: No where else to go... From: Steve Latimer Date: 16 Mar 02 - 01:36 AM Annamill, My prayers go out to you and Amy.
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Subject: RE: BS: No where else to go... From: Bert Date: 15 Mar 02 - 10:25 PM Love and good thoughts to you and Amy. Don't play down her concerns about getting her head shaved, I remember how Lou cried when the chemo made her hair fall out. Hugs from both of us. Bert & Tree. |
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Subject: RE: BS: No where else to go... From: AllisonA(Animaterra) Date: 14 Mar 02 - 07:02 PM Anna- this is my first time checking in for awhile. My thoughts and prayers and hugs are with you and your daughter. |
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Subject: RE: BS: No where else to go... From: Amos Date: 14 Mar 02 - 06:37 PM Dear Anna, You are really greatly loved in these parts, ya know...keep your chin up and your nose pointing north. Call if you need anything at all. Amos |