Faith, and a little hope to hold on to

[Tania+]

[size=10]Dear Mazukov,

Sorry, I've been quite busy today. Went to a dear friend's graduation. She has my complete respect.
She has had to meet so many challenges in her life, besides being totally deaf, has just received her college certificate, and is now looking to major in broadcasting. I just had to attend the cermonies and cheer her on. I also went to visit my relative with cancer. It is a difficult journey indeed for those having to brave the disease, as well taking ongoing surgery, or kemo. My prayers continue for her, for all who are facing daily challenges of this understanding. I came home, and just turned on the news, and am a bit rattled at both the news of the earthquake in Indonesia, and I understand in New Guena, New Britan, and of the Oregon coast. Oh boy, any closer to our state, and I might as well get out my Mae West, and have a paddle nearby.

I pray for all the souls who have died in this earthquake, and pray for those who have survived, as well that nothing of catastrophic proportion happens again. It seems that one thing happens after another, either on a large scale basis, or personally. But, as you say for us 'mentally' we must understand ourselves. Yes, we must understand the strengths we have deep inside us.  Most agreeably, you are correct, it is the people one surrounds oneself in life. This helps to keep, support, and continue to allow one to focus on what is positive. Indeed the people on this forum, and of course on this very thread, have been a wonderful comfort and a wonderful source of daily strength to me, for my life.

I did not know you have cancer, but please know you are in my prayers for your recovery. I have enjoyed your posting, and look forward to all you share. I know that the many here, are here to rally to and for  you, and you are not far from our thoughts Mazukov ! God Bless you and yours.

I also hope Rachel will enjoy her vacation here in the U.S. It's a great country to see and be touring, and I hope she will enjoy her trip immensely.

With best wishes Mazukov,

Tatiana+ [/size]

[historywriter]

Dear Tatiana,

It was lovely of you to welcome me to the Forum and write.  I was very sorry that I couldn't help you, but I often think of you and pray for you.  Next time I go to church I will also light a candle for you,

Warm regards,

Lisa

[Tania+]

[size=10]Dear Lisa,

It is well that a wonderful forum as this, affords everyone a step outside their doorstep to enter into a global communication, that includes as this thread, the purposeful connect of sharing our thoughts, our reflections of things past, present, perhaps future. What more that we may speak to one another here, without pretense, or hidden adjenda to that of what is of prime importance in all our lives. 'Life' !

For me to think I have made a journey of such wide expanse, stills me beyond measure. That lives near and far, may join together still in our our own environments, yet connected with care, and concern for another, sight unseen, is truly meritous. To go one step forward that people I don't know, would take time, energy, and purpose to say a prayer for another, is more than uplifting.

When many of you mention that you will light a candle for me, I don't think necessarily that it is for me, but if you will, a representation for all who are in need of staying 'in the light', surely a guiding light.

It was my pleasure, and will remain my pleasure not only to welcome others here to this board, [as countless posters do already] but to the full understanding that we are here for meaningful connects, if not to validate the past lives of the IF. They were not perfect, and lived as well as they could in that of words and deeds. It is only fitting as we continue to be on these boards, to find positvie inroads to keep our communications, open, fair, vibrant, informative, and with respect.

You say you are sorry you could not help me, but I beg to differ. You took time to say hello, write back, and offer me time of your faith, and prayer. That is already something well into action. I thank you and welcome you as all the many other posters here, to my heart, my prayers. God Bless you Lisa.
Stay well, and continue to carry the light to others, of hope, and assurance !

Hugs,
Tatiana+[/size]

[palimpsest]

Tania

I had no idea of your problems.
Sorry to be so late in giving support!
I hope all the best for you!

palimpsest

[Tania+]

[size=10]Dear Palimpsest,

Thank you for your offering of support. I wanted to respond to your post this morning, but I had to go to my acpuncturist. I thought I would receive good news, but received the opposite. I thought at least with acpuncture, I would have better response in terms of halting the continuious pain. I was told that though Chinese acpuncture is good for many health issues, unfortunately, it cannot stop the destruct of the mylen sheath, nor can it stop the intense burning in my body. The weather has become quite warm of late, and when these days come, my back, legs, feet, and heels virtually feel as if they are on fire, and burn to the very bone. There are some days, and nights I wish I had taken a quick course on the nerves, so I might deftly cut them so I wont' feel the pain anymore. That of course would not solve other issues, but I honestly don't know how to handle this anymore. At times I think I will lose it and go banannas, w/o the whipped cream I have kept thinking that I will overcome this, and it will go in time. lol, the actuality is I will go in time. Between this and almost no sleep, my punitis is really suffering, and I apologize. My spelling of course is not doing so well either. Sorry, but venting right now is the only way I can feel I am in control and able to do anything. Oh boy what i could do to a lb of dark belgian chocolate right now. As you can see, i'm frustrated, and wanting to feed my anger on all of this.

I just watched a program here on pbs on Archimedes and that seemed to hold my attention for the while, but now it is done, and i'm back to venting. Sorry it has to be you, but, lol, what are friends for.

Ok, I'm going to read the rest of the threads, and then look at my mail, then go back and look at the ceiling and count the cracks. Now if it were winter, I might not worry about being so 'warm', but this is the start of summer, and i guess i have a lot to look forward to....but what say, tomorrow is another day, thank goodness

Thanks again, hugs, and God Bless you and yours !

Tatiana+

Tania

I had no idea of your problems.
Sorry to be so late in giving support!
I hope all the best for you!

palimpsest

[/size]

[Mazukov]

Yea you can get ticked off at yourself, but that doesn’t do much of anything in the big scheme of things other than stressing you out to the point of absolute frustration, what that does a lot is sort of counter act what the meds are trying to do. and then you stop and think just how do I keep my brain fresh while my body is going off the deep end, well of course the thought then becomes can I will my brain to cure my body but the brain isn’t powerful enough to heal the body in such a manner, nor was it designed to do so. What’s the solution you’re asking?, well it’s a combination of many things, draw strength from people around you  keep you head as fresh as you can. And at times to try things outside of the box. but mostly you have to keep the faith.

[Tania+]

[size=10]Only one minor thing Mazukov,

I can't take any medications or i will lose my kidneys for good !
That's the hard part, 'trying' to get through all this daily, without any backup of medications whatsoever.
I honestly think a person can go crazy with pain, without having anything to kill the chronicity of pain.
Keeping one's brain fresh day after day, round the clock is one thing, but when your whole body is wracked with pain, the deep end seems almost better. People with ms cannot, and will not be healed.
There is no cure ! That's the question i am asking, when will it be cured ?

I'm not arguing about drawing strength from my loved ones, or people here, but even i as a counselor know, that that is a tall order. Not everyone can be there all the time. I also believe it or not, think outside the box, and you need to know for over almost fifteen years, i have been keeping my life alive by only prayer.

You sound perhaps like you have or having bouts with pain, perhaps chronic pain ? So you are speaking from personal understanding in giving me advice ? At this point, I'm ready to find answers like countless millions suffering from not only multiple sclerosis, but many other issues of chronic pain.

I don't know if you know anything about multiple sclerosis, the mylin sheath, sensory peripherial nuropathy, but from what I have read and understood, regeneration of the mylin sheath does not come back. [Sort of like the kidneys, they don't grow back either, and that is one thing I have to look at and watch out for all the time also.] Once any of these are gone, they are gone. Same things with the nerves. When they fire up, they eventually fire themselves out, and they don't regenerate, end of nerves. In the meanwhile, the pain is excruciating, not to say debilitating. [I'm not upset with you, I suppose just at the whole issue of being caught in the middle of all of this, with no answers, with no ending but cyclic pain]. I grow crazy, trying to focus on anything, or just trying to make it through the next few minutes. It's an endless battle; watch what I eat, don't take anything that will injure my kidneys, no meds; try to find sleep, exercise my fingers so they don't freeze up and knarl, keep my mind busy, work to forget i don't have a body or feelings, and everything will be fine, but move as much as I can, so I will have the ability of movement i have left.

I think about this boards thread, and the thread about her IM and the sciatica and nerve and back problems she had during that time. Back then, it was even less understood, and it must have been very upsetting, and painfilled. All those difficult public interfaces, all of her motherly duties still had to be accomplished, and still she had to face her issues quietly. So, when I think of or have to face my time, I think about her, and try not to be so upset, or dwell on the pain. But in the end, I don't remain strong, and I break down, and I become upset with myself, and the whole thing just is too much for me to comprehend.

It sounds logical as you have explained it Mazukov, but when you have to face it everyday, round the clock, the mental and physical effect wins out, and everything else flies out the window !

But, I guess till science can offer anything of promise and permenancy for my needs, I will have to make up my everyday life from moment to moment. I have written around the globe to physicians, to scientists in the field; i have asked others with like issues what to do, but nobody has any real answers.

All i can do is go along for the ride....

Thanks Mazukov, for trying to help me out in this, and God Bless...but lastly, I will keep the faith !

Tatiana+[/size]

[Mazukov]

Tatiana, chronic pain yes every day. After the 14th back surgery I told them enough. the scars on my back are like a road map to nowhere.  I don’t know a lot about MS.  I do know about spinal cancer. My first bought with it started when I was 25 I’m 52 now. I’m with you in the fact that I can’t take much of any med any more so it’s always a concurring battle between physical and mental stability. Sadly I don’t have the answers for if I did I would surly pass them along to you. So again it’s just a matter of keeping the faith but that always has it’s ( I don’t know points as well) yea we can go to the moon and back and yet we can’t cure an illness for some reason that thought almost always ticks me off.       ~ hugs Tatiana.

[grandduchessella]

I am always amazed by your strength Tania.

I am awed by what you go through day after day with, as you said, no cure in sight. Your physical and emotional fortitude is remarkable. I feel that I'm gaining something just by reading your posts--it's hard to put into words, but sort of the feeling you get when you read about somebodies amazing journey through hardship or pain and think 'wow, that person is really remarkable' and try to take something away from them and help yourself become a better person. Inspired, I guess, would be the phrase.

I'm probably not making much sense--I get very emotional when I read these posts--but I do want you to know of my admiration and respect.

You are always in my thoughts and prayers.

I looked up the following patron saints:

Benedict, Margaret of Antioch for kidney disease and St Madron for chronic pain. St Madron actually has a shrine in Cornwall if anyone lives in that area.

I will include these saints when I pray for you.

[Tania+]

[size=10]Dear Friend Mazukov,

Hugs back to you! Forgive me, I think I'm walking around somewhat in a fog. This lack of sleep is starting to weigh on me, and I am not functioning very well. Lol, I'm part awake, and partly in a dream like state. I want to sleep, but can't, if that makes sense. Funny I have lots to do, but am unable to aptly get involved as yet. At times everything slows down and becomes slow motion. Gads, life treats you to the most unexpected moments of insight. You think you understand, and then when you go through days as such, you suddenly realize you don't know anything. How it humbles you when you think back about how much in control you think your life used to be, and how it is now under the seige of daily pain.

I had surgery on my back once, and once was enough. I think it is partially why some of my nerve pain exists today. I'll never forget the name of the surgeon, [ugh] 'ceiling', and oh boy did i ever hit it when i realized he had done the deed he had. I can't imagine you going through 14 back surgeries. How horrid.
What strength you have had to fortify yourself with. I'm sorry you had to go through such surgeries. I know what you mean about your baclk looking like a roadmap. Your so young also. But, your fiesty, and your a fighter, and I'm proud to know you sir! Yes, the battle does rage between physical and mental stability. It's ok that you don't have answers my friend, and of course I don't have them either. But I think that this thread is infinitely of importance to have and to keep, because there are countless lives facing daily the battles we face if not more. Your right again, we can go to the moon and back, but no cure for many illnesses. Still in all of this, we must not ever give up the good fight for life. It is as necessary as our hands across the sea, in the partnership to stand together for life. I'm better for being here and meeting wonderful people as you and the many others who have found the time and the energy to state their thoughts, feelings, and offer a prayer.

I place you and all in my daily thoughts and prayers, and wish only for you and yours all that goodness and God's grace can provide you.

Tatiana+[/size]

[Tania+]

[size=10]Hello GrandDuchessElla !

Every time I see your little girl's photo, it makes me feel good. She has such a sweet wonderful face.
I'm glad you have shared it with us. Give her a special hug from me, please.

My strength, thank goodness from my father above. Without God, i would have nothing!Because of the kindness He has offered me of His many gifts, i can and continue to face what I can. It is not always easy, but I know others face even more difficult issues than i. I have been kind not to really place the innumerable and vast other issues of difficulties I have faced throughout my life, because that would be too much. It is sufficith to understand in all of it that life makes you either strong, or you suffer endlessly without being able to continue your journey of life. There are no gurantees of life, and that it won't be difficult. It's a long journey and a long lesson, that gets us readied for the promised land, and oh boy, am I being taught.  If you think your inspired, by all of this, you should have heard the stories of those I encountered in my life's journey. It pales my'n enormously! But thank you for understanding the issues i have tried to share to date. I think I have and continue to share because I want people to know, no matter what our adversities in life, we still have to go forward.

Take for instance your husband. He did not want to be placed in harm's way, or to go to war, etc. But many times, in life, we are placed in certain situations so we can understand exactly what the gift of life is all about. WE don't want to do a lot of things, or be involved in many issues, still somehow we are, and we usually come out for the better. Well, that's just like life. The whole journey of life is a teaching ground, of all kinds of lessons. We can remain involved, and keep our spirits up, or become embittered, sullen, resentful, mean, and crabby. That's no way to live, and being that way is just plain rude !  

I look back at all you shared about your family, your precious munchkins, and your daily issues. It was wonderful, and quite uplifting. I know it must have helped many lives, and probably many whose husbands or wives, or fathers, mothers, who were similarily called away to serve in and for the service of their country. Both of you served as wonderful role models ! So, don't short change what you offered and gave to many as well. I'm a better person for having read what you and so many others share on a daily continuum !

You know as you talk about saints, I think about my favorite angels as well. I have two main angels. One is Gabriel, the other is Peter. I thank you for taking the time from your family to look up the patron saint of Margaret of Antioch, and St Matron.. Your very sweet, and I find it most moving that you would think of me enough to pray to them on my behalf.

Before I forget, how are your other munchkins, your handsome hubby, and last but most of all, you?
Have you planned any vacation as of yet ? Please do Catch us up on your thread about how all of you are doing. I'm sure there are many awaiting to hear just as I am. Thank you again, God Bless all of You ! Hugs !

Tatiana+

[/size]

[aussiechick12]

Dearest Tania,

I haven't spoken to you in a while, but it feels like I have because a) I have been praying for you and b) because I have been reading you lovely posts to everyone else. Sometimes I cry when I read your posts, actually most of the time. I am an emotional person, things get to me and I never let them go. And I'm glad they don't.

I told my mum about you and showed her the very nice post that you replied with and she cried too. She's was a nurse and now she's at TAFE (like college) learning to be a social worker. It's funny when we both do our homework together, but I like it. She is also praying for you daily. I also prayed for you in a school mass we had the other day.

Tomorrow my exams end (I did my maths test today!!), I only have History and Geography to go (History is a real breeze we're doing WW1 so that's ok) and then I've finsihed my exams till the end of the year! I might be going to a friends house to celebrate the end of the exams but dad said I have a cold so I might not be able to go.

I finished the book "A Fatal Passion" and I'm now reading "The Romanov's Final Chapter" but it's hard reading when you have to study. Oh well, I girls' got to read! I'm also saving up for the Romanov Fiction book "A Summer Day is Done" (I think it's called that!) which is only $0.01!! But since I live in Australia I have to buy $9.00 postage and handling, so I've got seven dollars and I think I'll do some chores tonight to get that extra $2 and one cent. I'm hoping that for my birthday I get "The Grand Duchesses" book and "The Fate of the Romanovs". But I have to wait four whole months  !!

I keep praying for you, keep up your faith in God and nothing bad can happen to you!
Emma  


P.S Dear Mazukov,
I pray for you too, spinal cancer - it seems so horrid. But if you think about the good things in life and you pray to God and keep up the fighting spirit nothing bad can ever happen.
Emma  

[Ra-Ra-Rasputin]

Hi Tania,

I just wanted to let you know that I have been praying for you and am thinking of you.  

You certainly put all of my little worries into perspective and your bravery is so inspirational. I admire you so much for all of what you have to go through, and yet you still go on without complaint and without giving up.  Keep it up!

I wonder, is kidney transplantation not an option for you? If you had a replacement kidney, then you could take pain medication? I don't know much about this and I'm sure you've thought of this as a possibility, I'm just wondering why that's something you haven't had done.  

My mother suffers from sciatica and I know how excruitating that pain is from watching her suffer with it.  She finds hot and cold therapy really helpful; basically using ice then heat on the affected nerves, which relieves the pain.  Perhaps that might help you too?

I am making preparations for my holiday today and doing some research of places to visit.  I am very excited, and hearing of your suffering makes me realise how lucky I am to be able to do such things.  You are an inspiration to us all, and a reminder that no matter what hand life deals us, it is possible to carry on with a smile on our faces and hope in our hearts.

Rachel
xx  

[Tania+]

Hello Emma !

Glad to hear from you! Hello Mum, Dad! Nice to meet you both also. You have a grand daughter, and I know you are quite proud of her, as she is of both of you. Now don't make an issue of tissue, either of you, or anyone for that matter. Life is full of many travels, and lessons. In this journey we are all travelling together, so we start to understand the full value of life, and of the better choices we can make. The other day, I came across a wonderful saying. Emma, it stated this : 'The will does not choose between good and evil; it is choice, rather that makes it good or evil'. This was stated by Karl Jaspers. So, indeed, we all have the right to make choices, but let's make sure we choose what is best.

Like your education Emma, take it and learn well! Just think for everything you don't want to learn, there are over 10,000 people at least, waiting for the chance to learn what you may not think is of merit.
But judging from your perky letters, and your go get'em attitude, I know you will do very well in life!
It's nice to know your mother is out and about, and taking on education again, after already achieving so much in life. Being a nurse is a very noble profession. [I had a friend as a young girl, whose sister was a nurse, who took her first position in England, and then who later applied to Dr. Albert Schweitzer, in Lamborne; she was accepted, but unfortunately due cancer, died early on, not to see her full dream come true] I guess the importance of this is that no matter what, she had a chance to make a choice, and at least knew that she was accepted, and I'm sure this understanding made her feel very good in her accomplishments. What I am saying Emma, is that every moment we live is important, so live it, fill it with goodness, and be proud of yourself. What we do in life is our complete signature, and good or bad, we need to understand what we do, is what we offer the world around us. Look at your mum, she is really being involved, and wanting to make this world a better place. Bravo mum, from how Emma has turned out, I know that you will help many others achieve their best ! You have a cheering team here! By the way, thank you mum for your prayers, and please know, your family is in my prayers as well. I bet you will have the best of time studying together. You should take a picture of that. That's a very nice picture to have, especially for Emm later in her photography book, to look back upon.

Wow, exams already? Oh that's right, Ra-Ra reminded me a while back of her exams. Well, I think if you study hard, you will achieve your goals. I hope you do well on your math test. Oh boy, I loved History and Geography. Now mind you take good care of yourself, and those sniffles. You might have to stay in, but your dad is just trying to keep you well, so you will be able to celebrate the end of your exams without feeling yucky.

Wow, Emm you really are a reader. Good for you. Well study first, then read, not the other way around.
Looks like your a helper around your house as well. I guess your parent's are very appreciative of you.
How old will you be Emma on your birthday ?  Four months is not so long away Emma.

Emma, when a person believes in God as much as I do, I can't think or wish for anything bad to happen to me, or anyone. This whole world needs prayer, and I am not the only one Emma. So keep praying that a better and wiser world, full of goodness will evolve. You and your family, and the lovely people on this forum are definately good human hearts. As long as we keep talking to each other, and offering our best here and in life, the world around us can and will be affected in positive ways.

Don't change ever Emma. Stay the way you are now. I'm glad I know you, and I pray God will offer you many blessings, and happiness with you and your family.

I'm glad you have included Mazukov in your hello's ! He and many more are indeed in our prayers. He has a wonderful outlook, and a wonderful fighting spirit indeed. God Bless you Mazukov, always !

Tatiana+


P.S Dear Mazukov,
I pray for you too, spinal cancer - it seems so horrid. But if you think about the good things in life and you pray to God and keep up the fighting spirit nothing bad can ever happen.
Emma  [/quote]

[Tania+]

Hi Ra-Ra,

I know you have been praying for me, I feel your prayers, and everyone's. I feel it deep inside. It has made a wonderful impact on me, and continues to allow me to know, that my reaching out here was the best step I could have taken. Thank you for your prayers !

When I was youn, [long ago...] I met many young men who had come back from the front line of battle. I saw them in all manner of what their wounds had offered. I saw how they still looked toward life,wishing to be involved totally again in and with life. I can never forget those faces, or their staunch determination to be a definite part of their communities and families again. One young man in particular caught my heart, and my very soul with his determination. He lived out on a farm in California. He was tall, freckle faced, with a shock of bright red hair. When I met him, he had come home with terrible, horrific wounds. He was minus an arm on one side and a hand on the other. A leg was missing, and he was blinded in one eye. One day, I heard his unmistakable voice, arguing with his physician behind a door in the hospital hall. I turned to one of his friends and asked concerned, 'why is he hollering at his physician' ? The other guy winked at me, leaned down and whispered in my ear: 'why he is mad that the physical needs he asked for, to enhance his person, [since so much was taken from him] is so darn late. He wants to know why they have been so late in delivery. He needs that artificial leg, that artificial arm and hand, and demands a pass to go home, today if need be' !
I looked at the man, incrudulous to believe already what i had been told. I repeated, 'he demanded a pass to go home'? I knew that did not sound like this young man I had come to know in the past six months. He was usually so calm, and collected. All of a sudden this red haired young man came bounding out, and stopped in front of me. I looked at him, and said, 'i don't understand why you are so worked up, and upset'. He looked at me, started to turn around and go away in his wheelchair, and then came back, and said, 'i will tell you why, it's because I have to get back to the farm and help my mother bring in the crops', if i don't, nobody else will be there to do it'. Then he wheeled around and went back into the physician's office, to badger the physician into giving him all he was demanding.

Ra-Ra, I have never forgot that young man. He had a goal, and saw himself as whole, and nothing but nothing was going to keep him from doing what he thought was right, and still was his future. Now that's inspirational, that's bravery, that's courage! That is never giving up ! In defference to the memory of this young man and many others I have met in life, I can't give up. That would not be me, for it was not them either. I repeat what I have learned from so many other heroes of and in time. I hope that all of you will continue to share these stories of life, and all that it affords us in the lessons of life.

Now in regards to the replacement of a kidney. I have 20% left so I am guarding that 20% at all cost. But I am 0 negative, meaning I can only have 0 blood type, and 0 kidney donation. There are very few with that available. Lol, they keep calling me[the blood bank] and forgetting i can't offer blood, though they need it because it is so rare. So right there, I know a kidney transplant, is not a given. I was on dialyis for over 3 years, and even the people who were waiting, who were not 0 negative had waited already 5 years, some 7 years, there were no kidney offers. So, i figure, the ratio of anything available is not that available. Besides you have to take lots of meds, almost like 20 a day, and cancer and other issues can arrive just from taking those meds. So, I just guard what I have, and use prayer every day. It's all I have left Ra-Ra, it's all i have left.

But thanks for the idea Ra-Ra. I'm so sorry your mum suffers from Sciatica, and it is a very pain filled experience to go through. She's in my prayers also Ra-Ra! I use heat and cold, but that's all i can do.

I hope your holiday will be splendid Ra-Ra. Bring back some lovely pictures, or a post card. If you or anyone should run across a place which has great dark chocolate, get the address, and i will connect with them. I love dark chocolate !    Or if you find a bakery that has out of this world cakes, and delivers globally, get their address, i'm game in writing to them.

Don't worry about me Ra-Ra, i'm going in spirit, with each of you on your vacations. I'm going to slip into that little coat pocket of yours and peek out at the variances of beautiful sites along the way. Remember when your smiling at something that is breath taking, I'm right there on your shoulder, taking it all in!

Hugs to you Ra-Ra. Oh, sorry, nice to meet you mum. Bet your happy your daugter is through with her exams. I know she will make you proud, if she has not already!

Keep up the good fight and yes by all means, carry on with smiles on your faces, and always, always, hope in your hearts !  Well said Ra-Ra, Well said !

Hugs ! God bless !

Tatiana+