Wow. This is your most powerful piece yet. Please consider entering it into writing competitions so it will get widely published and more people will be as moved I was reading it.
Send a copy to Richard Cohen (Meredith Viera's dh)... he needs to read it, too.
Heidi
Helen I am so proud of you, I hope that this works for you because if it does, honey I am hot on your trail. I have got to convience my nuero she is happy with my meds but I am like you, surley there is something out there just a little bit better. I am tired of being tired also. You go girl, I know that you will succee. Merely you are good at anything you do, keep it up
sherry/smomdukes
You are too kind Heidi
I wrote this one...more for myself...not as some formal post and...I think my writing is better that way...the ones where I just have to get it out. This was one of those times.
I hope that man is okay. I hope he finds a bit of happy somewhere. Everyone deserves some happy.
Thank you so much for your lovely words. You made my night!
Hi Merely,
that was a powerful article. thank you.
I suddenly had trouble walking today too. fine one moment and brain disconnect to leg the next.
i remember years ago, the first person i ever met who had ms, limped. her one leg would start to step and hover in the air and then a little later decide to follow through. she had no idea she was doing it, until her neurologist pointed out that she was 'missing a step'.
recently a well meaning friend discovered healer louise hay. ms hay hypothesizes that we "create our dis-ease" in that resentment = cancer, guilt = diabeties etc....(funny her book never mentioned MS and it's emotional cause.)
I was highly insulted by this theory, as if anyone would opt for the cards we are dealt!
if i could just out think this dis-ease, don't you think i would have done so by noW!!! I hollered at my friend.
but, i came to realize, it's not the suffering that we go through so much, but what you DO with it.
Thank you for taking your suffering/insight/thoughts/wonders/pain/fears and turning it into guidance and reflection for the rest of us through your column.
I hope that nice though bitter man will take his anger and use it to help newbies stay strong to find help as quickly as possible.
take care,
MM - as usual a great topic and article.
In general I'm an optimist. I've always believed, even pre-MS, that I MUST do the best I can with any given situation. I think I was seriously scared before my dx when I didn't know what was happening to me and one other time while I was walking with our dog and I started crying with the fear that I wouldn't be able to do it anymore.
Bitter? NEVER! Once I learned what MS is and does, I wasn't really surprised that it had come to me. I have 2 cousins with MS, 1 since age 18, and the second dx the same age as I was in the same year. Also my boyfirend from age 6 is an MSer. I believe we were all susceptible and we grew up in the same area in NYC, under, or not, the same sun.
If this is my given situation, I will do the most and best I can and live life to the fullest.
Peace & Serenity,
Maris
You said it Maris!
Right...we have to do the best with what we have. If I can't walk I will use wheels. If I can't talk I will use sign language.
I remember when I was a little girl...there were four siblings who went to school with me..and mom and dad both had disabilities. Mom was blind and the dad was deaf. Those parents came to school each and every day to pick up their kids. They made it somehow...made a life for themselves and their kids. You just do. You just figure out a way to make it work.
I just always want to keep writing. That is what I pray to God about...that no matter what...I can keep writing...and loving my kids...take care of them. Then I am always happy.
I am tearing up here. This is really hard to leave this site...harder than I thought. Just wanted to reach out one last time and...let you know that you are all magnificent. You are all special and...you are gonna make it. We will not lose our ability to...be happy.
Thank you for all your wonderful comments. They mean a lot to me and to others who you help so much.
Hi Lara
Yeah...I had heard that theory on Doctor Phil too...sheesh. as if we don't have enough to deal with but then have some quack blame us for our own illness. There are plenty of stressed out angry people who do not have MS!
This MS stuff is hard...the not knowing. I almost want to yell to the universe, "Bring it on! Give me your best shot!" and then...at least know how bad it will get. Then accept. But the not knowing...it can make you nuts.
Thank you so much for sharing your experience here and I hope you continue to do so. It is so nice to hear from all of you...and just know that I am not alone in this.
good luck in all you do Merely Me.
You have made a huge difference for many here, sharing your struggles and thoughts.
I will say a prayer that you will continue to soar in your writing and will never loose the ability to care for your kids. That doors will open for you and opportunities to share your gift would abound. That your health would not worsen but remain stable in all ways. God would have you and your family in the palm of his mighty hand always.
amen
Lara
Thank you for the post today. I am certain we all can relate to it in our own way. The waiting rooms, hopsitals and clinics certainly are places where our malady is forefront in our minds and our emotions are near the surface.
The day I was diagnosed I remember just going through the hospital and seeing a fairly young woman sitting near the elevator with a brace nearby for her leg. I smiled and greeted her. The waiting room can be a tough experience. My most recent appointment after my recent mri, I ran into a a very nice businman who is well known in the community, and has had ms a long time. I hadn't seen him in a couple of years and last I had heard from someone they had said he was "on his way out" that ms had taken over. The man was in good spirits though he had had a fall, he had gotten treatment and was looking forward to getting back home that day. I ran into him again at a sushi restaraunt with his daughter, using one crutch and looking great.
He had a very positive attitude.
As much as we can work through our days with equinimity and grace it becomes easier. You very eloquently said we all have our data points on a spectrum. We should have a lot of hope, and be optimistic.
Thank you for your insiteful writing.
Merely I so enjoy reading your post. MS is something to behold. I enjoy telling people about my MS espespecially those who have known me from the past. I consider MS a bump in the road of life, something that we just have to get over. Yes there are times when it can get the best of us, and if we let it, we can be come bitter, not here, I refuse to let it make me bitter no how no way. It's not in my nature. It is eaiser to smile so that is what I choose to do, smile. Yes I talk about my MS in the waiting room also it is my favorite subject! Thank you MM for such a wonderful post.
sherry/smomdukes
I have many times thought how difficult it would be to share our MS in a group.It would be analogous to Merely ME's post.Feelings of jealousy,envy,despair,hopelessness,would be evoked,for us. As in waiting room conversation,we see our current or future condition in another.That is the human condition,which is more pronounced for us,who live in a state of anxious anticipation.
I have long been emotionally in touch with this.I expressed this insight to my neurologist,who agreed,that is why a group forum,could be threatening.
Hi Jeanette!
Do you mean a live group? Or one like this? I was going to join a real time support group and I still might but...I dunno. I like on-line support way better...more convenient for one thing. I would be curious about how people have fared in local MS support groups. Does it help?
Thanks so much for your comment!
Thank you Jen...
It is helping me so much tonight to read all of your wonderful comments. I feel less alone. There is hope. There is always hope. Never lose it.
Some days I do this double take like...I have MS??? what? are you kidding me? and then other days....I say...sure I have MS...and my life is still good...sometimes better because it has more meaning...each day is a gift. I am still here. I am still alive! I can still sing and laugh and love. A bed of roses? No. But...it never was. Life is always hard. So why me? Why not me? Why not any of us.
I am babbling...trying not to cry. This is my last week to write here and...I hope I made a difference.
I know you all have made a tremendous difference to me. You have helped me...tons. and I thank you.
Jeanette,
Thank you so much for contributing to this part of Health Central. I have really appreciated your posts, and they have given me comfort and yes have taken away that alone feeling. I looked forward to your posts each week. I will join the other part of the site, as I too have struggled on and off with depression for quite a while. I agree with the double take thing, and those days when we are able to feel that are good. Life isn't fair, but it is good. We have to try and keep a good attittude and stay hopeful.
Your writing is wonderful and I wish you all the best in all of your writing endeveurs! Take care!
Jen
Hi,
I mean a live group.This support group is wonderful.Despite opening up as to the degree of impairment we share with MS,it is not visiually threatening.Intellectuual knowledge,I feel enters a domain of safety,whereas group therapy,is more threatening,as we see ourselves as fortunate or unfortunate in our degree of impairment.I have posted my picture on the home page but don't know how to bring it up,as seeing each other feels more connected!
Hi Jen,
Thank you so much for your kind words.I just went to the pharmacy,my HANGOUT!!Hello....and was told I am their favorite customer....I'm told that a lot and it feels wonderful and empowering.Despite it all I cherish each core moment of safety with gratitude and love....I truly do!
Your insights are touching and valuable.I wish your days to be embrraced by well being.Your responsiveness to me,have given me comfort.Thank you,Jen...
This article was very thought provoking. For a few months after I was diagnosed, I had no desire to meet anyone with MS. I just wanted to get on with my life. But now that I've been to a few support group meetings (and plan on still going) I realized how much perspective you can get from other people. Not only can you get advice on how to handle specific symptoms, but how to handle feelings as they arise. I've been told by two neurologists that I'm "lucky" (yes that is the word they used) to be diagnosed with MS at a young age (I'm in my 20s). I think what they meant by this was that the earlier you can start on a DMD, the less likely you will progress to disability. Well, that is assuming one of the DMD's works for you, but anyways. It irritated me when they said that, even though I knew what they meant, because I'm sorry but being diagnosed with MS at any age stinks!!
The past few months I've been "comparing" myself to other MSers (the few that I've met) and think, well, they don't have relapses as often....etc. It is really not a good way to think because I think with life in general, you shouldn't compare yourself to anyone else. It doesn't do any good, and it just usually makes you more miserable. I've been thinking, "why couldn't I have gotten MS at a later age? Why couldn't I have 2 more decades, if not more, of being healthy?"
Well at my most recent support group meeting, we met a man who is in his 60s who was recently diagnosed with MS. Not only that, but he was diagnosed with Primary Progressive MS, so he doesn't get any relief from his symptoms. It just hit him one day, he said up until recently, he hadn't had any neurological symptoms, so it hit him really hard. As I listened to him relate his struggles, I realized that it stinks for EVERYONE who has MS. It doesn't matter if you have RRMS or PPMS or how old you are, there are challenges for all of us. At least with RRMS I get a "break" from my symptoms. I can't imagine suddenly having MS and then realizing that my symptoms would progress. Whether on sites like these, or in person support group meetings, I realize that other MSers can give different perspectives on things.
Thanks for your thought provoking sharepost.
I hear you oneofakind!
MS...just...sucks. There isn't really any way to pretty it up. And it is frightening...the Relapsing Remitting MS is hard because it is like...you are waiting to lose something...and then have to worry if it will be lost forever. It is like it is teasing and taunting you...one day you can't talk...the next you can't walk right...and still yet another you can't think straight. It takes a lot of faith to...get the through the day. You literally don't know where you stand. So you don't know...how to accept because...what is it that you are accepting? So is this worse? Better? I don't know...because this is my experience. I can't know what other experiences are like.
We can empathize...we can guess...what it is like for other people but we really don't know. Do they have support? Do they have kids to take care of? Are they dealing with this disease in poverty? Do they have incredible stress? Are they depressed to begin with? Do they have other illnesses in addition to MS?
I am just babbling tonight...just trying to figure out...what it all means. But you know what? I think it all means something. I do. No matter what...we all have purpose and meaning to our lives. And we are going to make it.
I wish the best for you. Thank you so much for writing here. It means a lot.
I also began to notice people with mobility issues after my MS diagnosis just over 3 years ago. Though I did not have a noticable limp at the time, I wondered when I saw people limping along unaided, with walking aides, or riding in a wheelchair, if they had MS and whether or not I would end up like "them". I had high hopes that my MS would go into remission, that the Rebif would prevent further relapses. After all, my neurologist said, "So what? So you have MS, what's the big deal? You're still going to live your life, you're still you."
Well, after a move to another state then progressively and quickly declining despite being on Rebif and then Copaxone, and a multitude of complementary (and expensive) treatments and supplements, I was diagnosed with Primary Progressive MS. I ended up being one of "them".
When I started limping and falling, I began to notice how few public places are equipped to accommodate disabled people. I began to mentally measure the height of curbs and the unevenness of surfaces that I would have to carefully navigate. When I was still driving I would not exit my car if the obstacles seemed insurmountable, and I would go home or find another store that seemed less dangerous to me.
When I started using a cane and walker, I began to wonder how far this disability would go, how many compromises and how many more humiliations I would have to suffer.
When I had to stop working and was no longer able to drive or walk more than a few steps (even with the walker), I wanted to find that neurologist who diagnosed the MS and shake him! I wanted to say, "So what?! How dare you! When you lose your mobility, pee your pants on a fairly regular basis, and not know if the disease is going to kill you or just completely immobilize you forcing your family members to be your caretakers, then you can tell me it's no big deal!"
Like the man in the waiting room, I too am full of bitterness and bile for this insideous disease and for the 4 neurosurgeons and 5 neurologists who have been unable to help me. However, I have not given up. I am still taking numerous supplements and do quite a bit of research online for new studies. I email doctors and researchers I read about, asking if there are any upcoming trials or existing treatments that I would be eligible for.
I have recently started taking Low Dose Naltrexone, 4-AP, and an herbal supplement called Sclero-Eze which has hydrangea root (that has recently been administered to mice with an MS-like disease). A few days ago I read about Inclined Bed Therapy (IBT), which is supposed to help relieve some of the symptoms of MS. I am going to order a metal bed riser to raise the head of my bed 2-6 inches. I have emailed a vascular surgeon in California who performs a stent surgery in MS patients who have Chronic Cerebrospinal Venous Insufficiency (CCVSI). Unfortunately, I am in the mandatory 2 year waiting period for Medicare after being declared disabled by the Social Security Administration. Being uninsured, even if the stent surgery could help me, I cannot afford it. So, I've asked the surgeon if there are any upcoming trials I could join.
Though I have bad days... a lot of bad days, I still have hope. And I have a wonderful husband who is willing to sleep on an inclined bed for me! I have a mother, sister, brother, aunts, uncles, cousins, in-laws, friends... well the list goes on of people who love me and are rooting for me. This disease may not be cured or effectively treated in my lifetime, but I'm not going to let it beat me.
Hi there Carolyn
I am just about in tears reading this...doctors can never understand what this disease is like and particularly for you...who was told one thing and...then to have things change on a dime.
The term "indomitable spirit" comes to mind when I think of you and what you are going through. It means that you are unconquerable...and have exquisite courage. I am so glad to hear that you are not giving up and that you still find joy in your love and connections to others. Sometimes this is all we have to sustain us.
It is unfair what has happened to you. If I had some magical power I would take all this hardship away from you. But I can't. I am just a witness to the world and to my own life.
This is my last week writing here and...it feels so bittersweet. I know that your story as well as so many others here will stick with me for a very long time.
I hope that you continue to find the joy in life despite the hard times. I wish you the best and...please do come visit me on the depression site. I am going to really miss you guys.
Thank you so much for your response to my email! Aside from complaining about and detailing every aspect of my condition, I sometimes think that I have forgotten how to communicate with people. I am happy that you found the hope in my email that I intended to relate to anyone reading my post who might have a similar story and need a little reassurance.
We are all human and have obstacles to overcome during our lifetimes. I certainly don't want to portray my experience as more difficult or tragic than anyone else's, despite the sorrow I often feel for myself!
So, thanks again for your empathy and kind response to let me know that you found some light in an otherwise dark detailing of my disease.
Dear MM,
I hadn't realized that you're not going to be presenting here anymore. I'm really sorry to hear that. Although I'm often late catching up with discussions, I always relate to what is being said. As I've probably said here before, I'm not good on group moaning sessions, so online groups suit me well. I've really being enjoying the discussions here, the subjects you bring up, the input from all of the people who join the conversations, the exchange of feelings, experiences, knowledge. I get a lot more here than I do from talking to drs.
I wish you and all of the people I've "met" here lots of great days, minimal pain, love, optimism, and no or slow progression of this "thing" we share.
Peace & Serenity,
Maris
Wonderful article. All your articles are wonderful and I always enjoy reading them.........however, I am surprised that someone as positive as you always seem to be did not have anything else to offer him. While it is true that sometimes we need to just vent and sometimes we need to just listen, there are other truths too. Every MS'er has their MS differently. I have obvious physical disabilities, while someone else has less obvious symptoms (depression, fatigue, cognitive issues, etc.). Who are we to judge whose MS is worse?
There does seem to be a lot of people with MS who are angry and bitter about it. There are also a great many MS'ers who lead happy and productive lives.
How does one go from point A to point B? I don't know. But I do know that a good place to start may be by recognizing that things could always be worse. Also, recognizing and being grateful for what we have can give us an attitude of gratitude. I am guessing that is something that your gentleman did not have.
Living with MS is certainly a challenge and a mystery (How will I feel tomorrow???). For me, I would much rather be alive with MS. It is so much better than the alternative.
Thank you for all that you contribute to our community.
Michael
Thank you Michael!
This is really nice for you to say. I do wish that I had something to offer this fellow but I think just listening to him...that does help. Sometimes people don't want the positive spin...they just want to be heard. MS does suck...no way around it. And everything is relative. Everyone places a different meaning onto what happens to us. Some people focus mostly on the losses...some try to block it all out...others just make do...some feel grateful for what is still possible. But I find that most of us will feel all of these things at any given time. We go through phases. Everyone's experience is unique.
I can't tell you how I will be emotionally if I lost my ability to walk. I do not know. I can think that I would adjust and still be happy but who knows?
There are times when I wonder if my "positivity" is just a form of denial. Perhaps others are...realistic. I always like to think...that I am going to survive no matter what. I do feel lucky that I have made it this far.
Let's hope for some good years ahead for all of us. I want to enjoy my life no matter what happens next.
This is my last week writing here. I feel sad. But...I think this is the right thing for me right now. I hope you all still visit me over on the other sites I write for.
Thank you for all your lovely comments. I wish you the best.
Hi Merely Me,
This is a very good topic with because it makes us think. Of course we should not compare ourselves with others anytime, but that is easier said than done.
Why am I not rich like him? Why don't I live on a horse ranch like her? Why didn't I break a leg that heals instead of getting MS that doesn't heal -- ever? Or if we want to stay specific with MS:
Why did people tell tellnhelen this is inevitable so she better just accept it instead of letting her deal with it at her own pace? What would they do in the same circumstances? (Oops, a comparison)
Why did neurologists tell Oneofakind she was lucky to be diagnosed in her 20s? She learned that no decade is the lucky one to be diagnosed with MS. Why did Carolyn's doctors tell her it was "no big deal" when they weren't living with MS, but surely they were familiar with people who were? Even with many bad days that undoubtedly felt like a big deal, Carolyn decided not to let MS get her -- there is always hope.
There are other comparisons. How did we hear our diagnosis? Many of us heard negative or hopeless words. Many others have heard nothing yet and would be grateful for those thoughtless words because they would not be in limbo anymore.
How do family and friends respond to certain symptoms? Co-workers and strangers? It is hard to see an MSer who can still walk and dance without thinking “I wish I could still do that” – or an MSer who races cars or climbs Mt. Everest! But it works both ways. Someone may be looking at you and thinking the same thing, or maybe thinking you sure handle it well and maybe they can, too. Some of us go through periods that may feel like bitterness, but hopefully we can relax and accept.
It’s probably human nature to make these comparisons whether or not we have MS.Each of us has our own demons, and we can learn from others who have similar demons. Even if you can walk and I cannot, I know I can still be comfortable and happy. I hope you find your own happiness, too.
I hear ya Vicki...in life you really can't compare circumstances. I have seen very happy people who are "worse" off than most in a lot of ways and some very unhappy people who you wonder...why they feel so rotten about their life. It is all relative.
I always take comfort in what you write Vicki...and more so your attitude about life. I get a lot of strength from you...just wanted you to know that.
Please take care of the community here...I know you will. Thanks for being my friend and for always being a postive voice here.
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What a wonderful & timely commentary for me to read this evening. Throughout my 24 or so years of MS (I'm 40) I'm usually the 1/2 glass full optimist. I can still walk, although I need a cane, actually I have several walking sticks with cat's on them...I hate the C-word, so I refer to them as walking sticks, so I can't complain since I can still walk after so many years of having MS.
However, cognitive function difficulty has made driving & working out of the question. I'm somewhat bitter at the moment because of this, trying to be there for my Husband, like he always is for me is not wasy, especially now that he is having serious problems from a complication from his diabetes. He is a Type 1 juvenile diabetic, yeah, another auto-immune disease in the family....at least the cat's (our kids) are healthy. He is now dealing with gastropareis (nerve damage to the GI tract) and so I have spent more time lately in waiting rooms regarding this. I find myself angry at those Type 2's who don't have to take insulin, and could potentially control it with diet/exercise. I'm pissed because of the assorted ignorance I've run into with family members who don't even seem the least bit curious of how to help control the disease of their loved ones, and of course still think they can eat whatever they want to.
Of course, I've run into several people who of course know's someone with MS, usually they make the usual comments: so & so is either: in a wheelchair, still living a normal life & working, dead, or they have it confused with M.D.
Since I don't get out much anyway, I've noticed so many others with assorted disabilities in these waiting rooms, and of course, I'm sure there are quite a few other invisible illnesses that I don't see. I think about how lucky I am that I somehow ended up with someone who "gets it", living with chronic illness, and provides emotional support and love. I cross my fingers and hope for the best turnout with my hubbies treatment, gastric pacemaker, feeding tube,still don't know.
At least my cat head walking sticks make the children in the waiting rooms smile, which in turn makes me happy.
Meg
I really enjoyed this article. I believe that everything is relative. Relative to your experiences, your life, your knowledge and with that you develop perspective. Every person person has a story and their stories aid in your perspective as well. You put it all much better than I can. Your writing just reiterated what I have had on my mind lately. Thanks.
It amazes me when we all live in our own bubble and are focused on our own lives and issues. This article really popped my bubble! We have the same effect on each other. He hates people that can still walk with MS and those of us with MS are scared to death of being that person that can no longer walk one day. It is totally natural for both sides to feel this way and we shouldn't be embarrassed to have these feelings. I have only been diagnosed since April of 2009 and I, for the most part, am fortunate enough that I can still carry on my daily tasks as normal. Yes, I have fatigue, I have to take weekly shots of Avonex, I have buzzing in my left arm and leg, anxiety, etc. But I can walk and run, I honestly think daily of how fortunate I am that this disease hasn't been worse thus far. I take it very serious and understand that this may not be the case someday. So in the meantime for all the people with MS that cannot walk, I run for them and use them to inspire me. I ran my first (and last) 10K 3 weeks ago (it was too much), I ran one 5K in July this year and plan to run another on Thanksgiving. I have NEVER ran 3 miles in my life until after I was diagnosed with MS. I am thankful that MS has made me healthier because I would not have ever considered running a 5K before, never. Just as others with MS inspire me, one of my dear friends that has been running with me,tells me all the time how I inspire her. That is so cool. We are all in this together no matter what stage we are in, we need to support eachother and love one another and hopefully come out in the end with a cure!
I was in the same situation as you are "way back when". When I got out of bed, I lost my balance and fell. A family dr sent me to a neurologist who had me stand on one leg, close my eyes and touch my finger to my nose. I immediately fell. He told me I just drink too much. I was really offended and told him I only have a glass of wine a couple of times a week. Then he said I was just "being silly." For the next 2 years "strange symptoms" occurred but by the time I could get in to a dr. they were gone. (I was working on my Masters degree at the time, also.) Finally, after I took my oral tests and got my degree, the next morning my speech was really slurred. Then they sent me to a decent neurologist who tested and told me I had MS. That was over 25 years ago. I was able to continue teaching til 2001. I have gone from using a cane to using a walker to get around my house. I am so thankful God has promised to be there for me, no matter what. He never promised me that I won't have troubles in this world, but He promised that He would never leave me or forsake me. I hold to that promise each day.
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Hi Merely
I've been a little quiet lately because I was exhausted. I was tired of being told by, many in and out of medicne, that my condition was envitable. That I HAD to ACCEPT that this MS thing was gonna get me. Well I just can't do that and I can't walk (roll) around wishing and hoping for better circumstances. I can't sit with others and compare my condition with theirs. I also know that my MS experience belongs only to me and my decisions and their consequences are only mine. So WHAT do I do now? Well the "traditional" protocol has not been working for me. The doctors seem to be able (and more willing) to treat symptoms, ie, spascity, fatigue but no one has figuered out how to at least slow the "train" down. OK I have made a decision to go "out of the box" and try low dose naltrexne (LDN). The more I read from people (including doctors) with MS taking LDN, the more I know I want to try it. I haven't started yet and I'm so excited. I know there is both the possibility of failure and success but I am excited becase this is something I CAN DO to affect my condition. Were gonna see what happens soon. Whatever that is (and I think it will be good) It will be MY decision. I'm not so tired now. I have found something that may be the key for me. Thans for allowing me to speak. My very best wishes to you and the man in the waiting room.
Wow!
I have heard others speak about LDN...I would love to hear how this works for you...it sounds like something I would consider. I think you are right...this is your life and you gotta do what is best for you.
Thank you so much for all your comments and...wisdom these past months. I will miss you very much.