Finding hope, when there is none

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Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 1/30/2007 4:42 PM (GMT -6)   
How do you pull through the very worst of times?  this past month for me has been a complete let down.  I truely felt that some of this blood work was going to show something, instead I got nothing but normal, in range results.  I've been feeling like this for just over a year now.  How do you guys (who have been doing this for 5 years +) push through? 
 
I've lost all faith, and refuse to believe in God anymore.  I can't believe that a God that I've prayed to, believe in, worshiped, and spent time talking to other about has turned his back on me.  Some says, God works in mysterious ways....  well... why are we in so much pain?  What is so mysterious about making us feel better?  Faith is the road we all have to take, and I just find my faith rather lacking because of this.  This isn't the only reason behind it... it's also due in fact that my Wife has a tumor in her breast and doctors won't know for another few days if it's cancer or not. 
 
I find myself very angry towards everything.  I'm sure some will not agree with my rant, but how can you find faith in something that isn't there for you?  How can you find hope, when there isn't any?  How do you get up the strength to carry on, and not clock out?
 
Will I be like this for the rest of my life?  I don't know.  Doctors sure as heck don't either.  But I've thought about it... if this was going to be my life until I pass... what's the point?  I have so many dreams to fulfil.  So many places I wish to go to, and other things that require my body to have energy.  Let's also not forget about the fact that what happens one day, if I decide to have children.  How am I going to stay up with them, chase them around, if I can't even manage to pull myself out of bed? 
 
Someone please tell me... what keeps you here?


 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/30/2007 7:22 PM (GMT -6)   
Orion, my heart truly goes out to you and I can very much relate to the dark place where you are right now. There were several times in my life when I felt very sick and the docs could not give me any answers. I definitely think it's worse being sick and not having any answers than being sick and knowing what you are dealing with.

I wish so much that there was something I could do or say to lift you spirits even a little and give you some hope. Sometimes I don't know what keeps people going when they feel so rotten. I think for me, it was some hope that maybe someday there might be some relief, maybe not tomorrow or next month or next year, but maybe a few years from now.

I know all about lost dreams too. Like you, I used to be really in to fitness and I ran a half marathon every year with a goal to run a full marathon the year I turned 40 (which is this year). My husband and I also talked about training for a triathalon. So many of my dreams revolved around fitness and outdoor types of things. Since I have gotten so sick these past years it was like I was stripped from the inside out and robbed of many things I loved and I felt robbed of who I was. Over time it was like I had to rediscover who I was and other things that I could enjoy that didn't take as much energy. None of this is easy and I still grieve. As hard as it is, if you can make it through this terrible darkness, there is usually some kind of light on the other side.

Another thing I did for the first year I was sick was go to counseling because I had such a hard time dealing with how drastically my life had changed. It helped a lot, but it's important to go to someone who has experience working with people with chronic illness.

As for God, I think it's pretty normal to question beliefs when faced with something like this - there's no right or wrong place to be - you are where you are.

Just know there are people here who care about you and will walk through this with you. I know the CFS board isn't extremely active, but I'm usually here almost daily and a few others are here regularly. My heart aches for you and I wish there was more I can do.

I'm also sorry to hear that there is still a possibility your wife may have cancer. You will both be in my thoughts. Please take care of yourself.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Letty
Regular Member


Date Joined Sep 2006
Total Posts : 80
   Posted 1/30/2007 7:33 PM (GMT -6)   

Hi Orion,

I can really feel you suffering & feelings in your post and it pulls at my heart.  I also suffer everyday from CFS/FM.  I had to quit working after 19 years for the govt. because I was just to sick and it was killing me trying to work 10 hour days.  My 50 year old husband was diagnosed with prostate cancer last May and had surgery in July.  We are still trying to get over and cope with the lingering effects of that.  I am 48 years old.  I live with the pain and fatigue and mental effects of these diseases every day and it is not fun.  Its horrible to say the least and most people do not understand.  I try not to complain because it doesn't help me and there is nothing to be done anyway except to try and treat the symptoms.  I was diagnosed in 1996 - 10 years ago.  My son was 10 at the time.  It does affect your ability to raise your children as far as playing ball with them and taking them places and things like that.  I turned into a spectator and yes remember crying my eyes out sometimes because I felt cheated out of these things.

I believe in the evolution theory for several reasons but mostly because it just makes more sense to me.  I can not believe a "GOD" would allow such suffering as goes on in this wicked world.  Innocent children being abused and murdered.  People starving, people killing people by the thousands and millions in the name of GOD., I can't think much of a god who would allow these kinds of things to take place no matter what the reason.  Thats just my opinion and I respect the right of others to believe differently as they see fit, to each their own.

As far as having the will to go on...it can be hard.  For me, I think of other people who are even worse off.  Like people who are paralized.  People starving who have no homes.  People like my mother who enjoyed living every minute of every day and would give anything to be alive and still enjoying life.  I feel to guilty feeling sorry for myself when I know that she and my only sister would love to be here still, even though she was diabetic, on dialisys three times a week, had glaucomo and had a below the knee amputation.   I guess what keeps me going, is I feel like I'm living for them.  Even though my life is not of much quality, it is a life and I do have moments of joy and I try to make the most of them to carry me through the rough times. 

Orion, I know how hard it can be and I also get depressed, really depressed sometimes.  How can we not?  It is hard to live in pain every day and not get down sometimes.  I guess that after dealing with this for over 10 years, I have learned that we have ups and downs.  You just have to hang in there during the "down" times.  You have to learn to get pleasure from the littlest things.  It sounds like things have just stacked up on you at the moment and with good reason.  I know when your facing a potential diagnoses of cancer how scary and intimidating and overwhelming that can be.  It takes a while to learn to deal with these diseases and I think we go through the common grief stages (denial, anger, depression and finally acceptance), because we have lost are fun, carefree, and healthy way of life. 

Lastly, the hope that the medical field will find an answer soon or at least better treatment. 

Sending you thoughts of love and wellness and warm rays of sunshine!  Also hope for your wife that all will be well.

Sincerely,

 

 

 

 


Letty
 


sparker
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 1/30/2007 9:03 PM (GMT -6)   
I'm sorry you're feeling like this too Orion. I can certainly appreciate where you're at. I've been there and back up and down again over the last 5 years and the only thing that's kept me going was the hope that I would find out what's wrong -- and not wanting to sentence my mom to a life of misery should I decide to give up.

I'm trying to provide something positive to say - but I'm bouncing off the bottom myself right now. I think being around any and all people with positive energy is the best thing to do.

Tru
Regular Member


Date Joined Sep 2006
Total Posts : 116
   Posted 1/31/2007 11:42 AM (GMT -6)   
Hi Orion,

You know that we are going through the same thing. Still doctors aren't listening to me the way that I want them to...and really I don't care anymore. The only reason I continue to see a doctor is to get Armour Thyroid. If Armour Thyroid was available over the counter I would not even need to see a dumb doctor.

Detoxing has helped a lot. I can not stress it enough. Detoxing, chelation...either type. It works! Everything is going in the right direction for me. Change slows up at times...but then it speeds up again. I guess that's my body detoxing itself. It's amazing to me...I actually feel changes...and I see changes too.

I'm still looking to drop my doctor...because I really don't need him. Really, I'm doing all this on my own. I wish that I could find thyroid glandulars etc locally, but I can't. I still feel like an idiot when I bring info to him to discuss. He shocked the hell out of me when he said that "we" need to get the bis muth out first. Finally, he's relating to me. Still I don't need him, because I already knew that I needrd to detox...I had already started.

I did start a thread on oral chelation. When I read the ingredients I noticed that I was arleady taking most of those supplements. A coulpe in larger doses, and some smaller doses than they have listed. Some I'm not taking at all. I was amazed to see that I was arleady taking most of those supplements. More proof that I'm going in the right direction. Since I have already started taking those supplements I won't purchase it...but if my doctor give me trouble with Armour Thyroid than I will purchase. I feel I that can only gain from taking it...I'm already taking most of it...and I'm detoxing too. www.atplaymall.com/shop/nb-more-info-formula-ckls.htm

Stop depending on doctors. It's as if they want...or need us to stay sick. You have to do it yourself. I needed tests for proof (and so did you). To prove to family and doctors that what I was going through was real...and most of all, I had to prove to myself that I was right all these years.

What do I need a doctor for? I know what's wrong, I know how to fix it(thanks to the Internet), and what I'm doing is working. It's slow, but I'm moving forward not backwards.

I told you about selenium, chromium, and magnesium( all 3 in 200mg, 250 is okay too, I take 500mg in magnesium) way before I started taking anything esle, and those 3 alone was pushing me forward. They helped to bring my enery level up. The 3 improve thyroid function which has a lot to do with energy and metabolism. The 3 help pull out toxins too. We all have toxins. I know that I have a problem with bis muth. I have 4 times over the toxic level...and I will get it out....estrogen too. Believe me!! I've learned that plastics mimicis estrogen. I have estrogen dominance. It is known that the plastics that we use gets into our foods and mimicis estrogen in our bodies.

I take wild yam too it builds progesterone and cortisol levels.

Orion, we can work together. We just have to find what works. We already know that doctors can't help so why even bother?

God already gave us what we need to get well we just have to find it and use it. Doctors don't care about natural healing. What I mean by natural healing is taking supplements that our body naturally produce to heal ourselves. We just have to feed our bodies with more of it until we get well. It's just that something is preventing our bodies from doing it's job. Whether it's toxins, stess or whatever.

We know that doctors love to treat symptoms and not the cause.

I don't come here often anymore...I don't have to. I just come to check on you. You helped me too.

Don't give up!:)

I have adrenal fatique(or one of the many names that is called), abnormal hormone levels and hypothyroidism(tissue resistance to thyroid hormones).

Meds: Armour Thyroid, Wild Yam Progesterone Cream, and lots of supplements in addition to my multi-vitamins.

Post Edited (Tru) : 1/31/2007 12:31:15 PM (GMT-7)


pasara
Regular Member


Date Joined Apr 2006
Total Posts : 206
   Posted 2/1/2007 4:12 AM (GMT -6)   
Orion, friend, you are not alone. Sometimes holding another's hand makes it a little less scary. I hope this site can be a way for us all to hold hands, even when there is nothing more to do or say. Here's mine...

ruggedtoast
Regular Member


Date Joined Apr 2006
Total Posts : 44
   Posted 2/1/2007 4:12 PM (GMT -6)   
And this too shall pass...

Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 2/2/2007 6:55 AM (GMT -6)   
Thank you all for your kind words. :-)

 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/2/2007 10:28 AM (GMT -6)   
when do you see the pcp or endo again?
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 2/2/2007 3:10 PM (GMT -6)   
Hey HM2.
 
I don't see the endo anymore.  I see my PCP again in 3 weeks. 

 


Nemekke
Regular Member


Date Joined May 2006
Total Posts : 309
   Posted 2/2/2007 4:11 PM (GMT -6)   

Orion,

I am sorry I didn't see your post earlier.  I don't have the answers about God.  I'm not a believer myself and never have been. 

I wish I had the answer as to how to go on.  For me, somedays it is minutes at a time, until the day is over.  I too am in diagnosis limboland, but for me it isn't CFS but whether or not my cancer is back, or it is MS or ???

Regardless of which conditions we are dealing with, the pain and frustration is basically the same.  Added to yours is the fear for your wife's health as well.  I was diagnosed with stage 3 breast cancer with metastases to the lymph nodes 12/29/05.  I started chemo in January, had surgery in July, finished radiation in November, and hopefully I am still cancer free.  I am currently undergoing scans to be sure.

Breast cancer is no walk in the park, but you can get through it with your wife.  The worst part is the waiting and wondering.  Once you have the diagnosis, you begin to look at the treatment options and feel in control again as you decide which options are right for you.  The same can work for your symptoms.

Most days now I am unable to go out, the tremors, weakness and dizziness make it difficult to plan.  So on my last good day, I stocked up on supplies, for the bad days.  Now on the days I can't go out, I can still make hats for chemo patients, or work on next year's Christmas presents, or write....

What do you enjoy doing that you can adapt to do now with your current limitations?  Perhaps reading.....or finally beating that video game you felt guilty playing when you were 100%. 

I wish I knew how to give you hope.  For me, it is learning new ways to do the old things, so I have some sense of familiarity with my life.  I don't know your insurance situation, but is it possible to see a different doctor, who may have different ideas as to which direction to take in testing?

I just wanted to let you know that you have many "faceless friends" all around the world who DO have hope for you and believe in you.  Perhaps we need to have that hope and belief in you to carry you until you find it again in yourself. 

Wishing you and your wife the very best,

Michelle

P.S.  If your wife has questions or needs to vent, my email is available in my profile and I would be more than happy to correspond with either or both of you.


Though we live in a world where anger and hatefulness seem to be the norm, we CAN make a difference, one person at a time.
 
Full time Chronic Pain and Co-Moderator of the Chronic Pain Forum :)
 
Never lose faith in the kindness and love of others, you never know when you will receive lemons too :)
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/2/2007 7:39 PM (GMT -6)   
Orion, read the post by Bebs about the fibro and fatigue center. I don't know where these places are located but I think there are several in different areas. I think one might be out east somewhere. I asked Bebs to post where they are. This might be something for you to look into if at all possible.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



MsKittie
Veteran Member


Date Joined Jul 2006
Total Posts : 789
   Posted 2/2/2007 11:12 PM (GMT -6)   
Hello Orion82698
 
I am so sorry to hear that you and your wife are having to deal with all of this but you still have each other to lean on for support. Remember for better or for worse. This is some of the worst the better will be coming soon. You both will get thru this and grow old together so you remember that in 40 or 50 years when you two are setting together. yeah
 
 
(((HUGS)))
   MsKittie
 
~*~*~*~*~*~*~*~*~*~*~*~*~*~*  
I have an illness, My illness don't have me.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*                                      
 
Being happy doesnt mean everything's perfect.It means you've decided to see beyound the imperfrctions!God didn't promise days without pain, laughter without sorrow, sun without rain, but HE did promise strength for the day, comfort for the tears & light for the way                                        

 

 


bee33
Regular Member


Date Joined Nov 2006
Total Posts : 51
   Posted 2/3/2007 7:08 AM (GMT -6)   
I'm sorry you're having such a difficult time. I often hesitate to give advice here because my own expereince seems to be different from many others, so take what may be useful to you and leave the rest.

For me, it helps to remember that I am not my illness. I have to adapt to it but it doesn't define who I am. There are a lot of things I can no longer do, but I still have an active mind that gives me something to think about and be interested in at virtually any time. That's not to say I don't get depressed. I do. But what gets me through are the things that I'm interested in.

In particular, there is a band whose music I love that always lifts my spirits, and the band's songwriter and singer is someone whose presence in the world just makes me happy. Through my love of this band I have met one of my dearest friends, who I talk to nearly every day on instant messenger -- I see her in person too, but my illness and her family obligations make it hard to do often.

I have never been a believer, so I have always looked for hope in the arts, which are an expression of what it is to be human, and in my relationships with the people in my life.

I'm not a Buddhist, but Buddism may have some useful lessons in accepting our situation and coming to peace with it. Accepting doesn't mean stop fighting, just finding peace with where you are.

I'm sorry if I've said anything inappropriate or that might make you feel worse. I wish you and everyone here the best.
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