Lucky! Glad you enjoyed the serenity of the country

Discussion in 'Fibromyalgia Main Forum' started by Jen F, Jul 25, 2003.

  1. Jen F

    Jen F New Member

    on your vacation.

    Got the Chinese herbs boiling away right now.

    15 of those weird herbs you saw at the Chinese pharmacy, lol!

    But, no sea horses that I know of. The last 2 ingredients the Chinese doc couldn't translate for me, but a doctor at the Naturopathic clinic who is Chinese and knows a LITTLE of the written language said the last part of the symbols for those 2 unknown ones means vine.

    If there were seahorses, I think I would object. Aren't they endangered or something?

    All these ingredients are either fruit or root.

    So, you also are allergic to ragweed...

    I'm envious of you enjoying the sunsets and peace from the country, and the CLEAN AIR. We'll have to start paying for that probably, soon in Toronto....

    I once went to an oxygen bar.

    But, that's another story.

    Thanks for the hello and glad you had a nice time.

    Jen
  2. lucky

    lucky New Member

    Yes, our country is so very beautiful and that's why if I somehow can manage, my husband and I are taking short trips to visit some parts of it, but usually never during the summer months, because of the kids being out of school. However, it was so peaceful in Little Current (biggest town on Manitoulin), you heard nothing during the night, nothing. This is so remarkable because no matter where you live in Toronto or suburbs, there is always some noise you hear.
    Yes, I am sure that I saw seahorses a few years ago when visiting that store. I always got my Panax ginseng there, but fell in disgrace with the Chinese doctor once when I overheard her telling a lady who had CFS something which was false, and she did not like it that her profits were dwindling.
    Yes, I am allergic to a lot of things, among others ragweed, mold, dust mites, pollen, grass, name it. I have been very very tired lately and just had to get away for a short time. But unluckily the allergy with all the fresh and clean air did not go away. Which shows you again, with this illness if there is one thing right, there is something else which brings on symptoms. Luckily, I always was able to travel and I have seen many exotic places over the years. And somehow I still cannot believe what I did when I was a lot sicker than I am now. Sometimes I paid heavily for it, but one forgets luckily, but memories stay.
    Take care, Jen, and I wonder how that tea tastes, the brew, may be you have to put honey into it to drink it.
    Good Night for now, Lucky
  3. Jen F

    Jen F New Member

    I've been around Western Canada, drove through the prairies en route to Ontario as a kid, Also have seen some of Ontario and a teensy bit of Quebec once, a week in Cuba, 4 days in the Bahamas, drove from Toronto to Seattle WA through the States, including the Badlands - loved them, and I have spent a little time in Olympic Nat'l Park I think it's called in WA, a quick jaunt through the Oregon Coast and the fastest trip through the Redwood Forest in California that my mother's husband could manage...en route to Disneyland when I was about 19. The trip I was promised since I was about 9...was always "next year" LOL! Disneyland wasn't too thrilling as a 19 yr old, but at least i saw it and a peek at Hollywood and the famous dumpy Sunset Grill. My favourites have been the Oregon Coast and the Pacific Northwest of WA. I feel very at home in WA. Good thing I didn't move there! What I would do without health insurance, i don't know!!! But, then...maybe I wouldn't be sick either...hard to say where diff paths would have led us, eh?

    I can't really add honey to the tea as I am supposed to limit sugar in my diet. Though it's interesting to think of what this stuff might taste like with about 8 tsp of sugar in it. The new cola! lol!

    jen
  4. lucky

    lucky New Member

    I also love the Pacific Northwest and Oregon. My daughter was married close to Seattle so we were able to tour beautiful Washington State and Oregon a few times. Breathtakingly beautiful - and I call it 'raw' nature.
    My husband is a what you call very 'international' man, since he worked for a big international company and therefore our travel were a little different at times. But both of us love adventure and have travelled on our holidays extensively in central Europe over many years (Germany, France, Holland, Belgium, Switzerland, Poland, Austria, Luxemburg) and the past years we extended our trips to Southern Europe, and I am thinking Turkey for the Fall. Last spot was Portugal in May. My husband has travelled all over the world except China I believe.
    We have done many Carribean islands (St. Lucia, Barbados, Cuba in 1982!!, St. Maarten etc.), but our heart has been always in Mexico where we have visited every place you can imagine, first on our honeymoon many years ago, and then lateron for winter holidays. Name it, from Cabos down to Huatulco, we have been there once or twice, and on the Carribean side Cozumel, Akumal, and Merida (Mayan ruins are close by).
    In Central and South America, we have been to Costa Rica,Panama and Columbia.
    We have done transatlantic crossings. And have been in most of the U.S. states, except a few mountain states.
    May be I forgot a few places, but my photo albums are great memories and I can tell great stories.
    Canada did not do too well on my travel yet, therefore, I love to explore it in the future as well. Have been to B.C., and all over in Ontario and Quebec (love to go again soon!) however, Nova Scotia, New Brunswick, Newfoundland, etc. are still on my list.
    I really hope that I can manage to see a few more places and have so many great ideas. However, with this illness, I have become more careful and am not going to travel to some regions anymore, also I am more careful about safety and would never travel to Columbia today for example. But also, I am benefitting most when we are not away for too long, take antibiotics along and lately my masks. However, a few times I did return not in the best of shape. But this is getting a lot better lately.
    It looks like rain here in Mississauga, and I am still waking up, takes me hours in the morning.
    Hope, I did not forget anything, and wish you a good and painfree day, Lucky

    P.S. without the sugar I could not get the tea down, I am sure. I am down on the sugar too, however, I am not cutting it out completely. Bon appetite!

    [This Message was Edited on 07/26/2003]
  5. Jen F

    Jen F New Member

    That's great you have seen so much of the world.

    I've always wanted to go to Mexico...maybe some day...

    I haven't seen Eastern Cda either.

    Sounds like you have to see China sometime [and maybe Peru?] to be complete!

    I am too sick to travel now, even if I could afford it, so I know what you mean about your body not doing well lately on trips. If my energy ever improves and I have the money I will have to face the challenge of staying on this restricted diet while in unpredictable places! Don't know how that would work...

    I've always wanted to go to a poor warm country for a week on a helpful mission, maybe help with planting or with medical care or taking care of children or teaching English. But, I wonder if I ever will. We seem to be so susceptible to any new viruses or bacteria and so travelling can be scary, esp to a poor country...

    I think the Chinese herb tea is helping. I was able to get through most of my dose last night. I actually spilled about 2 tsp of the precious stuff.

    Hope you have a nice day today! Looks like it will rain soon, but the air is pretty warm, isn't it.

    Hey, did you hear about Liza Minelli? They are separated already...Another one bites the dust...so sad.

    J.
  6. lucky

    lucky New Member

    Today is not such a lucky day, I am very very tired and itchy all over. I call myself Lucky because compared to many others with CFS/FMS, I did not have to through such a tough time with doctors, etc. Having a very good family doctor who 'smelled' that something was not right with me, and being diagnosed relatively soon after, a lot of unpleasant visits with doctors and specialists were eliminated. I got basically the care I was asking for and which was fair. Nothing more nothing less. However, over the many years there is absolutely nothing new in treating our illnesses the way they should be treated, by knowledgeable professionals and more access to treatments.
    If I would have given in with this illness and worry about all kinds of things which might go wrong, I would have never been able to travel. And I believe because of the routine of travelling with CFS and what to do and NOT to do, I at least was able to survive. But many trips were taken before I was diagnosed, and I got very very ill at times, especially on my many trips to Europe. Don't ask me today, how I managed it all, fainting over England, falling asleep at Frankfurt airport, etc. When I travelled to the Third World, there were lots of precautions, one was WATER!
    And even in Europe, I never drink tap water. In Mexico, I never in the past years ate at restaurants outside our hotels. And I always see my doctor before I leave to get some extra meds in case I need them.
    I am sure that you also will be able to travel one day again, because I believe that with more research etc. there will also be more help out there hopefully. But it is a tough life out there with this illness, there are no two ways about it. I again have a provider who looks well after me, and I just cannot imagine the stress and the anxiety for many women out on this board who do not have that priviledge. My heart goes out to them, and the sad part is, nobody should have such a stress when being so ill.
    There are excellent programs for people to give their time in the underdeveloped world, but one has to be very healthy, because with poverty comes disease, and one has to have a very strong immune system.
    Liza already is getting a divorce. But, this was to be expected......who knows if she has it all together after her stroke, it certainly did not seem like it.
    It is still humid out and not very nice outside. Luckily we had good weather on the few days we were away.
    I really wonder what that tea would taste like without sugar. I don't think, I could drink it, or may be...if I put my mind to it, it would be gone with one big sip, who knows.
    Take care and have a good Sunday. Lucky

    [This Message was Edited on 07/26/2003]
  7. Jen F

    Jen F New Member

    the "tea" is more like muddy water than it is like tea we are used to, lol!

    How's that for an added visual effect?...

    Took me 2 hours almost to get through one of today's doses. Now I have to boil up some more for tonight and tomorrow "morning"'s dose. then actually tomorrow I have another acu session.

    But at least my pain is not as severe today. Tummy is a bit off and i'm so tired. Gonna force myself to go walk a block, though I'm not in the mood.

    Have a nice weekend.

    J.
  8. lucky

    lucky New Member

    Great idea - try to walk for a little while, it will make a big difference to get distracted for a few minutes and get a break from your pain and fatigue. I wonder with all the pain you are describing if you probably have both CFS and FMS. I have both, but my pain is not that severe that it is intolerable and, of course, the Celexa I am on is helping as well and the sleep at night with Dyserel is most important.
    I am sure that the tea looks like muddy water, but if you feel it helps, that's the main thing, taste budds are not important then, this will come later with a great cup of 'real' tea.
    Are you on any antidepressants and which ones did you find (if any!) that agree with you?
    The weather today kept me inside most of the time, my eyes are killing me and the humidity does not help either.
    Enjoy your little walk, even though it is hard to get going.
    Best wishes, Lucky
  9. Jen F

    Jen F New Member

    I enjoyed it, was nice.

    Someone I know also has eye pain with weather like this. I hope neither of you are suffering very much.

    Guess you are also a barometer. Until recently I never had problems with the rain or muggy weather or low pressure. I loved the rain and liked to walk in it if it was light. Heck, I lived in Vancouver and Victoria for a while. Mind you, they were atypical years and very hot and sunny alot! LOL!

    Anyhow, I am fortunate to not usually have more pain on the low pressure days like a lot of you FMers.

    I just recently got off Celexa and now take a very expensive standardized St. john's wort product from Germany called Neurapas which I get from ND or from Supplements Plus.

    For sleeping, I take Restoril, but been dependent on it for 4 years and my body has become more and more accustomed to it and so I don't always sleep long or get to sleep with it. I am actually planning to wean further [I've already dropped a mg or two by emptying the last bit of the capsule out] and hopefully come off it completely. But now right now.

    I really need to get a week or two where I go back to my old CFS self...and find reasons to live again!! Geez, summer is supposed to be my best time, functioning-wise!! But, I'm mostly missing it.

    I'm having a hard time emotionally tonight and feeling rather isolated. I have so few close friends anymore. The only one NEAR me is calling it quits, or so it looks as of tonight. I need this like I need more pain, but maybe it is for the best long term. The short term is hell though.

    I have called an acquaintance I like and haven't seen for ages and made plans to see her briefly next weekend, so hopefully that will help. It's something to look forward to, anyway.

    I have so few friends that I have a lot in common with, let alone near my age. The essence of who I am is a person interested in doing particular things, but I am too sick to get out and DO them, where I would meet other like-minded folk...I have become a shadow of my former self and don't really know who I am anymore, so don't know what to tell new people sometimes.

    I don't have any really really strong connections with the people in my current CFS support group, but at least some are friends I can call occasionally and get together with once in a while.

    i envy people who have lived in the same place for a long time and have a lot of people and friends who knew them before they were sick.

    It's hard to be losing my closest friend around the same time as mostly giving up on my family. And this friend encouraged me to ditch them...I wonder if that was such good advice after all...

    I really need to improve. And the sooner the better. So I can go out and meet people I really like and have a life! I can't even have a few people over for a small barbecue, though i plan it in my mind every summer. But, summer comes and I'm not well enough to manage the details [like buying a little barbecue!!]

    And I think the chances of people LIKING ME are going to be much greater if I am in a good mood, reasonably happy and in less uncontrolled pain.

    Do you have a number of good, close friends, Lucky?

    how has your illness affected your personal relationships with friends and family?

    J.

  10. lucky

    lucky New Member

    I am happy that you had a good walk, it is so great to just get out and even seeing strangers is taking the mind off for a short while.
    I do understand just too well what you are going through right now and have had a complete change in my life regarding my friends and aquaintances who were anything but supportive in my worst years of being ill. I felt as isolated and hurt, but over the years I rather gained strength from it and learned that it is me who has to survive and to eliminate any emotional stress, I did not drop them, but I emotionally removed myself from them. With that, the closeness was gone and is gone forever, but what I gained from it is that I survived without any help and support and became stronger. It took me a long time to find peace in my mind and it eliminated a lot of stress and anger.
    Also, there is nobody but nobody who will or can understand the severeness of this illness, not even your own husband or children at times. But they all have learned to give me a hand when I have a hard time. However, I have had times when I lost my nerves and was screaming and yelling because I thought they just were in denial. But they were not and I realized that it hurt them to see me suffer.
    Even when we get better, we all will have changed, the illness was just too cruel to not have had an impact on our lives.
    It was interesting to read that you plan to invite people over for a barbeque during the summer never takes off. Every summer I have the same planned, however, I have not succeeded once during the past years to fire up the barbeque and enjoy an evening in the garden with friends. If I manage to have my son and his wife over once during the summer, it is a lot and it involves careful planning not to get overload. Today was such a day, and luckily the weather turned out great.
    My eyes never burned so much than the last couple of weeks. Unbelievable and my eyelids are red from the itching. Vitamin E cream helps a little, great!
    Do you have a reason why you want to get off the Celexa? If it helps you and you have a little more quality of life, why not take it? I have a different approach to meds - I need them to survive with this illness or I am a basket case and cannot enjoy anything in life anymore. My quality of life has become very important, and since I am very careful at what and how much I am taking (and so is my doctor who will not prescribe any bonzos as people call them) for me, I feel very comfortable with this decision. The illness is just too severe to be brave and suffer.
    But, as you know, everybody has different symptoms, some cannot handle some meds, others cannot handle supplements, whatever one does we just cannot win.
    The stress alone being so ill as you are right now and the isolation is very hard to handle. And, I hope very much that you start to feel a little better. Try to take a walk every day, go have a coffee or tea and the spirit is going up.
    I am so tired in the morning, but when I am able to get finally up at 11:00 a.m., the first thing I do is I go out, away from the house, away from everything and walk by myself somewhere. I have met many nice people on my walks or having my coffee somewhere and have become the best shopper in the world. Where before it was Holt's - now it is Winner's. Life certainly has changed, but I have become a lot happier than I ever was when I was well and having a career. But it took me a long time to get there.
    You can write me anytime because I know what this loneliness feels like, I have been there, and wish you a great day tomorrow.
    Sincerely, Lucky

    P.S. Jen, I forgot to ask, are you familiar with a Dr. Zolan Rona who is a medical and natural doctor?
    [This Message was Edited on 07/27/2003]
  11. Jen F

    Jen F New Member

    Hi Lucky.

    Thanks for sharing your perspective.

    I am having an almost decent night, despite the loss of my good friend who has overstressed himself with worry for me and stress with our arguments and feels the need to walk away from our friendship- for now, anyways.

    I will miss him very much, but I won't miss being criticized so wretchedly esp when I am trying my best and making headway. I realize his health and sanity is at stake, so when I feel resentful I try to remind myself that he is probably doing the best he can too right now. Unfortunately, neither of our bests seem to be good enough for the friendship.

    But, I have made plans with a friend of my friend, spoke on the phone for a while tonight, and the social contact is good for me and bucked up my spirits. I am a bit concerned that this fellow might have romantic inclinations towards me and I'm interested only in a friendship, but I'll cross that bridge later. Perhaps he will be happy with just a friendship too, he lives rather close to me so would be convenient.

    Additionally, my spirits are higher because my pain is at least 20% relieved right now. I had a [painful] acupuncture session today, and I think the horrible Chinese herbal tea and the gentle stretching is helping. It is great to see improvement and I now feel fairly confident that this whole experience is NOT going to end in surgery or in chronic lifelong pain. Whoopee!!!! I am so lucky in that regard compared to some of you FMers...though the fatigue itself is not so grand. I know a number of FMers who are more functional than me, but it's hard to know what's the better trade off...be more alert and able to function but be in pain or need meds for pain, or have low pain but asleep half your life.... I'm sure those persons with intense pain would pick the latter, but I don't know about people with controlled pain. It's hard to see your life go by while you just sit and watch.

    I look forward to rejoining the 'low-pain' CFS ranks and focussing on tackling the fatigue once again. Diet very important there and I still haven't perfected the art of having regular meals that avoid all my allergens and sugar. If they magically appeared before me, i would eat them and only them. But, I don't have a car, some stuff needs to come from the Health food store, costs alot, takes a lot of prep time, I don't always have the energy, yada yada yada.

    But, I digress, big time.

    My point: my pain is getting a little better. Yay!

    I came off Celexa because I could not take enough for a good antidepressant effect due to side effects. The regular dose was my maximum. More and my sleep would worsen and the dry mouth would become intolerable. You see, both the Celexa and the Restoril dry my mucous membranes. I was having to wake up once or twice a night just to drink water, cause my tongue was dry and swollen, sorta stuck inside my mouth, very uncomfortable.

    So, when I realized I was fairly depressed and wanted more serotonin, I thought I would try the St. John's wort instead. I don't know if it's a great decision or not, but I don't have such a dry mouth anymore.

    I am so confused to hear about your friends and aquaintances who were anything but supportive in your worst years of being ill.

    You say you felt isolated and hurt, like me.

    I just can't fathom why we humans are made so that we don't understand another's pain or situation unless we experience it ourselves. Because it sounds like, as hurt as you were, like you don't really blame them, and I'm getting the impression from so many other people who also have unsupportive family members or friends that we can't really expect these people to understand much...

    Makes it hard for me to know how to best handle it/react, esp with my mother. And makes us feel very alone, doesn't it? except for the people with our illness we can share with...

    I think you were very wise to not drop them, but emotionally remove yourself. I'm getting an idea that that is the best way. But, my oh my it must hurt...

    I'm glad you were able to find peace in your mind and that it eliminated a lot of stress and anger.

    Yes, this illness is most cruel...stealing our futures and parts of our life. Many times our hopes and dreams. But, if I can manage to eke out a scaled down version, I think I can probably accept that. But I'm not there yet.

    I'm glad you were able to have your son and his wife over for a barbecue, I know what an accomplishment that must feel like.

    I won't give up planning my barbecue, but it doesn't look good for this year! lol!


    Hey, if you need to take meds to have a quality of life, I'm all for it. I definitely advocate for quality of life.


    To be honest, if I could take Tylenol 3 for my pain, as much as I'm personally interested in holistic medicine and natural alternatives, I would take the Tyl 3 and forget about the tiresome horrible tea making.


    You write: "whatever one does we just cannot win. " I hope that's not completely true... I do hope that more an more people find answers to improving their level of pain and functioning and I believe there is hope and perhaps a medical cure in the future.

    do you try any of the difficult special diets or the guai protocol? There was a young man previously in my support group and he recovered well with the guai. Mind you, his FM was more mild and he had a good social life and family to help him with things to look forward to [and not the responsibilities or physical stress of motherhood]. My FM friend finds evening primrose improves his pain by about 10%, do you take that? I saw recently on the Arthritis fdn website that Eve Primr. Oil is a proven anti-inflamm. Though I know it's not THE answer, I'm taking it now and it's obviously not enough on it's own!!

    Do you take supplements?

    You write:
    I am so tired in the morning, but when I am able to get finally up at 11:00 a.m.,

    I also find morning very difficult and am often not up til 12 or 1. I didn't realize it was similar with you. Your kids must think you are so lazy, lol!!

    I had a heck of a time waking up to get to my acu appointment. I was lucky not to be late, I only left myself 20 minutes or so to get ready cause it took so long for me to get functional...

    "Where before it was Holt's - now it is Winner's."


    Welcome to my world, Lucky!! It's always been Winners and frequently Zellers...

    Actually, there is a Holts near my Naturopathic Clinic [Bay and Bloor] and I HAVE been stopping in there they have excellent prepared food so I sometimes buy some and that way know I am getting a healthy meal for dinner even if I don't have energy to cook. Hopefully I won't run out of money too soon. I have a little fund and am playing a serious game in life. I am betting on my future and investing in food and treatment, with the risk being that i get well enough to work part time BEFORE I completely run out of money/family support. Cause I gotta tell ya, as generous as Ontario Disability Support is, you can't afford treatment on $900 per month. You can't even afford haircuts and other nonessentials unless you scrimp on food and the phone and I'm not prepared to do that. I have enough money for treatment for 4 - 16 months depending on what treatment I need, whether family help continues and a couple of other factors.

    Wish me luck!

    I'm glad that you have become a lot happier than you ever were when you were well and having a career!! You must have really been through a lot and overcome!! Congratulate yourself!! You deserve it.

    "P.S. Jen, I forgot to ask, are you familiar with a Dr. Zolan Rona who is a medical and natural doctor?:

    I remember calling him once while I was still working and was sick and being told there was about a 2 year waiting list already and they weren't taking more names at the time. I think. I know I looked into seeing him.

    Do you see him? or know anybody who does?

    Have a great night Lucky.

    Think I better go stir my herbs now.

    Oh, if your pain meds ever don't work for you, consider trying the Chinese roots that are good for spasm and for pain relief. I should do a specific posting so people will know they can help. Apparently this Chinese doctor has helped a lot of ppl. I'm not the only one my massage therapist sent there that was helped and I met a woman and her father there, the father had facial pain and numbness and some other problems and was helped a lot. I specifically remember the facial pain because my great aunt has that and has been searching for doctors help with it for years now.


    J.


  12. lucky

    lucky New Member

    Hope you had a nice day and got out for your little walk today. You really went all out to reply to me and I was trying to print your message so I do not forget any points you made, but the printer is new and does anything but print. I'll try something else in the meantime, wish me luck. So you will hear from me soon.
    Lucky
  13. Jen F

    Jen F New Member

    Don't feel you have to respond to everything I said, esp if you are really fatigued.

    but, something I do find helpful for responding to people is to highlight their post, then copy and paste into my reply and delete as I go along,, then I can refer to what they said without forgetting! Mind you, I don't always remember to do that, lol!

    Take care!

    Oh, wow...people already starting to line up for Stones concert...geepers...
  14. lucky

    lucky New Member

    Well, you are a computer artist, and I am just a basic user, so I have to see how I manage to paste and cut and copy and will have to learn it by trial and error.
    This way, it is so much easier to reply to a longer message and not to leave anything out.
    But I am trying to remember as much as possible, which probably is not that much, but......will try.
    I am sure that as painful as it might be, but the relationship with your friend is not something you probably need right now. Both being ill there is no strength left for any nurturing and care. Also, and this I believe presented the biggest stress is that your friend put conditions on the relationship which you just cannot fullfill at the moment. And nobody to begin with should ever live according to another persons expectations, sick or not. Especially with this illness we have to live every minute of the day according to how we feel and just cannot dance to somebody else's tune.
    I hope the date with the other friend went well or will be going o.k. At least it gets you out and you see a male for a change who hopefully can give you a little hand in understanding what you are going through.
    As tough as it is to live all by yourself and being very alone, but I am sure the greatest healing process will happen when you conquer the many stresses of this illness without any interference of other people. It is tough and very lonely as I also know, but it also puts us in a positiion where we are on top of situations and not the other way around. And we are the only ones to do it, although it is great to have support of people we trust and care about.
    I do not want to give the impression that I am the wisest person in the world. But, I am a little older, have experienced a bit more and have gone through all the emotional upheavals with this illness you can imagine before I was diagnosed.
    I am not quite sure, if you only have CFS or both FMS as well. My FMS is minor compared to the CFS which is still unbelievable after so many years at times. And without meds for example I would not survive at the moment.
    Also, I do not have any problems with the Celexa and only take 30mg during the day. For sleep I take Trazadone which is the best med I believe for our sleep disorder if you can handle it. But, I have tried so many other SSRI's before that I think most of them are so terrible and have so many side effects that from all of them Celexa is the one with the least side effects. And it has helped me which no other SSRI ever did.
    But I also take alternative things like Olive Leaf Extract and Colostrum and I am positive that these two right now are my saviour that I have survived so far with a sinus infection. Also I have been taking fish oils for years, EPA or salmon oil which helps with the pain as well. Also I tried EFAMOL many years ago, but I did not find that I greatly benefited from it, or I have forgotten. And, quite honestly, I do not believe in a lot of alternatives after having tried them with no results.
    I find it so very sad that many people on this board have not only to battle with this illness, but as I mentioned before with the financial uncertainties and reduced incomes. And to live on $900.00 is not the easiest thing in the world and pay all your bills, plus food, plus vitamins, plus plus, and the rents are very high in Toronto. It is very difficult for me to comprehend this, because I have a husband who always looked after me well, although I also had to give up a wellpaying job many years ago. I wonder if there are any other sources that you can get a little bit more money. Are you also on CPP disability? Does the government at least pay for your medications?
    Well, there will be chaos tomorrow with the concert. I would go bananas in that crowd, although I am much better in crowds now than I ever have been, but 400.000 and more people is a little bit too many? Would you have gone if you would have been able to? Seeing the old men jumping around should be fun, but it is remarkable that they can still jump that much with their abusive life styles.
    Well, if I forgot anything important, I will write again, but meanwhile, take care, and I hope your pain is getting less and less.
    After I read that St. John's Wort is useless, I wonder if it will help you, would be interesting to know.
    Take care, and get better......best wishes......Lucky

  15. Jen F

    Jen F New Member

    Was nice to get out this eve, am back now and took my sleeping pill. Will have to keep melatonin handy by the bed and remember to take it if I wake up way too early yet again.

    Yes, I probably would consider trying to go to the Stones Concert if I were how I was when I was 20. but, even if I was how I was at 26 I probably wouldn't like the idea of no chairs. I look forward to seeing them on TV and I wonder who the surprise guest might be.

    It breaks my heart to have missed peter Gabriel who was in town recently and is one of my favourite musical artists. Same with Yanni - I have wide ranging tastes.

    "Are you also on CPP disability?" -No. I'm supposed to apply and it's on the list of things to do...but I haven't got around to it. It's not just a simple matter...for CFS you have to fight, it takes 2 years, yada yada yada...now i would also have to appy for special consideration due to the delay cause there's been non earning years now. I'm not terribly motivated to do so at the moment since it wouldn't mean an increase in my current income, ODSP would deduct it from my cheques and I can't effectively keep up with my bills and other paperwork right now anyways...I still have to do my taxes from a few years ago, and I look forward to a refund from that.

    "Does the government at least pay for your medications? " Some of them, yes. And dental benefits, tho can be hard to find a dentist who doesn't want to charge you additional fee because the benefits don't pay their 2003 schedule fees. I thought I had found another one, just went 2 months ago for check up and teeth cleaning. I went to a dentist close by who accepted the ODSP benefits solely [and who said he thought it was criminal for other dentists to expect to be paid more since the people were on social assistance due to illness!] but he only spent about 15 minutes inside my mouth and I hadn't been to a dentist in over 2 years...plus there were stairs and no elevator. So, I figured it might be wise for me to get a 2nd opinion, just in case this guy didn't spend much time on my mouth because not getting paid much. Went to a different dentist, asked him first if he accepted patients on ODSP because my previous dentist, in his building, would want to bill me a fair bit on top of my benefits and I wasn't prepared to pay. I had my appt, this guy only spent about 20 minutes --Seems it's true: I do take good care of my teeth [I have my own scraper at home and take accumulated placque off myself once in a while and I floss, brush 3x per day cept when i am really exhuasted...fear of needles will do this for you :) ]

    Anyhow, i recently received a bill from this dentists office. ODSP paid them about $80 but they are billing me for the diff between that and about $190 that he wants for less than half hour work and no xrays...I phoned the recep to clarify the matter and when she realized I was not planning to pay, she treated me like a scam artist and was very interested to get the name of the dentist i saw when I told them that I had another dentist who would have not charged extra. I was trying to prove to her that I spoke to the dentist before hand and that he had agreed to not charge me extra, I mean why would I pay that much when I am on a limited income and have a dentist that will do it for no extra charge...So, she says something like: " So, you've seen other dentists, too, aahhhh....What was the name????" I hope this doesn't mean i've been blacklisted in some way.

    I might write a letter to try and straighten the mess out, tho whether the doc would actually see it or not who knows...receptionists can be mighty towers who like their power...The dentist is rather aged --maybe he has memory problems. Too bad, I thought he was very nice, but I don't think I am welcome there again. And if I was going to be charged $190 for a dental check up I would have gone to the original dentist where they spent an hour with my mouth and were extremely thorough. I had no problem with them other than the price.

    Now I forget the other thing i wanted to mention...Oh ya. St. John's wort. Where on earth did you read that it does nothing???? that's not true.

    The product I use is standardized and has been used in double blind study and been found to have beneficial results over placebo for mild to moderate depression. And from my research I know St. John's wort and the SSRI's can be good for pain and for sleeping, in the right dose, due to the increase in serotonin.

    Problem is, will the St. john's wort help much if the depression is severe...maybe not.

    anyway, sorry your fatigue is so devastating, that is my major problem too. Stones are on live around noon I think. As far as I know they are doing a 90 minute set.

    Woo hooo!

    Night!

    Jen F
  16. lucky

    lucky New Member

    Before I go out of the house for my daily outing, I like to thank you for your message.
    Since I was watching the Stones and various other bands last night, I did not spend any time on the computer. What a disappointment, and I only watched because my daughter was the one who convinced me to watch it with her. I am not A fan of heavy metal nor other groups and never was a Stones fan. In all honesty, when my time was wasted watching the show on TV, I cannot imagine having watched it from the grounds of Downsview with all the inconveniences you do not need with our illness.
    I am sure that CPP would not pay you as much as what you get from Social Security. Therefore, I wonder if it is even worth it to apply when this will be deducted from your monthly payments. But I am not very familiar with what is out there to make things easier for you. But, as I read people sure make it harder to treat you when on social security. This is not fair, that you have to fight to get proper and adequate treatments by dentists and other healthcare professionals. Hopefully, you one day will leave all that behind and can get back into the working force with more adequate and better treatments or even a cure for this illness. Well, I am hoping and believing that it will not take too long and we will see major breakthroughs.
    I read just the opposite about St. John's Wort. There was a study done by a university somewhere in the Northern U.S. on St. John's Wort where they found out that it has absolutely no impact on even minor depressions. It probably depends on what one wants to believe. But I always have been very surspicious about these types of treatments because above all, I have become to realize that our illnesses are just too severe to treat some of the symptoms with supplements. However, if you are lucky, the better for it. Again, what helps that's what counts.
    You seem to have a lot of FM symptoms with your severe pain, and I hope that you get the pain under control, and above all that you get a good night's sleep. Melatonin alone would not do it for me, and I take it in combination with the Trazadone (Dyserel), and it is the Trazadone which gives me 7 and more hours of uninterrupted sleep.
    I am still pretty fatigued, but I am sure that without the OLE I would have more problems right now with all the ragweed pollen etc.
    Hope you have a good day and do not forget your walk. I am happy that it agrees well with you and that you at least feel that you do something for spirit and body which is so very important.
    Have a great day and take care, Lucky