Hello all;

They say the higher the climb, the harder the fall...so after my weeks and weeks of feeling like I had a new life given to me due to D-ribose controlling my fibromyalgia, then getting a severe lupus flare-up, I am pretty low.

I've spent a week trying to decide whether to even ask your opinions or not... I'm kind of ashamed for needing someone to help me think things out, but we all need a "sounding board" sometimes I guess.

For those who don't know me, 1.5 years ago I was given 1 year to live due to end stage lupus, and I have almost a dozen other serious conditions caused by lupus destroying various organs in my body; and lately found a supplement that changed my life and made me feel alive again by controlling my fibromyalgia and healing many things in my body. It also changed my daughter's life, and now my Mom and even her Dr. are trying it. It's called D-ribose and it is responsible for literally thousands of functions in the body, and I am sure God led me to find it, because I actually bought it by accident instead of something else. There are other posts about D-ribose below in my blog.

If I was superstitious, (I'm not)...I would think that when I started proclaiming my miracle of such a turnaround in my health and life, I might have jinxed myself. Although I am still fibromyalgia free when I take the D-ribose, I got smacked off my feet with one of the worst lupus flares I have had in years. Yes its my own fault because I thought I felt so good that for the first time ever, I did too much, and so now I'm paying for it. I did all the Canadian Thanksgiving shopping and cooking myself. In my first marriage I had my mother-in-law's help because we entertained up to 30 people at a time. This time it took me 3 days of cooking/resting until I got it done, then I was too sick to eat it, but I made my brother so proud he cried. lol. He's been the cook and chef for Mom, Dad and I since I moved back home with them, but he quit cooking for us when Dad died 10 months ago.

Also I have been overwhelmed with legal work to try to get my husband home ASAP for compassionate reasons. I have been doing the work my lawyer should be doing for me, and I have done 1200 pages of documents this week.

I was so busy working or collapsing that I didn't have time to write to anyone. I can't keep up with my email anymore which takes 8-12 hours a day. I don't have a secretary and staff like my lawyer does does, and most of what she wants me to send IMMEDIATELY are things I sent her up to 4 times before. Some of the papers are almost impossible to get new originals of, like papers that were notarized in the court over in the area that my husband is living. She just keeps claiming she didn't get them, but for many I have a photocopy, which means I sent her the original. I just broke down and cried yesterday to my hubby. I was so tired and overwhelmed and getting cold feet wondering if I could even be a wife if I am this sick every day.

I am still grateful for finding the control for the fibro, because if I had to fight fibro along with this, I would not be able to even move.

I think that because I am so tired (slept 1 hour in 72) and in pain that I am not able to think things through clearly, so I need some feedback. I realize not everyone here has the same beliefs as me, but I feel very close to my Lord personally, so I feel a bit hurt/confused, even betrayed, or cheated, like I had been given a precious new life and then had it taken away again, and as if He WANTS me to suffer and not be able to feel human or alive or able to care for myself. That hurts my feelings so much, because I try so hard to be thankful to Him for everything, and was so grateful to start to feel what normal people feel like and think like without constant pain and exhaustion. I had gotten hope again that I could be a good wife to my husband when he comes home from the war zone; now I have doubts again now that I am so sick, but I still have faith that God will supply my strength for each day. We'll get through somehow, one day/one hour at a time. I just wanted life with my husband to be so much better than it can be at this level of suffering. Do you think God wants me to suffer? That he would take away what I thought was the first steps to a new life? I just don't know how to interpret this spiritually. Yes I believe there's a reason for everything, but I just feel like a child whose parent took away something like leg braces or eyeglasses that I would need to function in life. (I can just hear a few of my male friends now saying 'Wow, women just over-think everything!') lol.

I even feel guilty about not being able to understand this right now or wondering what God is doing...but it's a normal human reaction I think, especially when I am too sick to sort things out for myself.

Any thoughts?
Bless you all--

Bluebirdy

Posted by Bluebirdy at 18:27 9 comments  

Labels: d-ribose, fibrofog, fibromyalgia, lupus. faith

Photo by Jason Smith

I ended up in the E.R. again day before yesterday. I waited in pain in bed for a week, not wanting to deal with the abuse AGAIN...but finally the pain got too much and I went. It was such a good experience, it was a shock! Seems that so many things are turning around for me. New Dr,. found a remedy for fibro, maybe I'll find other remedies, a good hospital experience, knowing my husband is being protected no matter what. (And right now he has no utilities and no way to get out of that town to a place that DOES have utilities, so chaos will soon break out in that town, which I know he will be protected through, but so sad that he has to go through all of this.

On Wednesday I was treated so well it shocked me. I got in quickly, was seen quickly, given a good dose of medicine without the interrogation, and got out of there quickly. I think one reason is because my heart rate was so fast it scared them. The nurse said "Can your heart rate really be that fast?" I said "When my pain is this bad, it can be. My heart has stopped from this pain before." I have only had about 3 visits that good in 15 years. There were also signs on the walls that said "This hospital is an abuse and harassment free zone." So I wonder if finally that hospital was reported so many times that they got in trouble and had to start staff seminars about how to treat patients or something. Maybe because of the publicity of the man dying a few days ago in the E.R. waiting room after waiting 34 hours and not getting treatment, really put other E.R.s on their toes to really help people not go through that. The waiting room was almost empty, so maybe that story also scared a lot of people into staying home if they thought they would have to wait.

Some things are better since I started taking D-ribose. life is better since I found D-ribose. Life is brighter, more enjoyable. stress and pain are easier to bear. It seems to have helped my depression, diabetes, heart problems and fibromyalgia pain and fatigue...but unfortunately other health problems got worse because of overdoing and due to weather changes. The picture at the top just seemed so much like how I feel.

Lupus is such a horrendous disease. So little research is being done on it, and there are only 3-4 treatment options, all more dangerous than the disease, so we choose to just have each symptom treated as it occurs.

It is more painful than most cancer cases, lasts much longer, yet we are expected to carry on and keep our lives going,and to smile and not show our pain, and we very rarely are offered pain relief because of the fear of addiction. Doctors still don't realize that there is a difference between addiction and dependence, and that its very rare for a person with chronic severe pain to get addicted. Their body gets dependent on those meds, but not addicted. There is a scripture that says something like "There will be scourges where people will pray for death to take them, but death will not come." There are sure a lot of diseases that have developed in the past 15 years or so that fit that scripture, and lupus is one of them. The other day was Mom's 76th birthday, and i thought how very strong she is to go through this pain for so many years, and I can't imagine going through that pain for another 40+ years! I guess we do what we think we can't, one hour and one day at a time.

They named Trigeminal Neuralgia right when they named it the suicide disease. It truly is among the most painful things a human can bear, and I laid here for a week, choosing to suffer with that pain and try to wait for it to pass, rather than get more abuse from the E.R. I went to the clinic to see my new Dr. hoping she would be able to give me a pain shot, but she said they don't give pain shots in the clinics in town anymore, so I would STILL have to face the E.R. I found a support group for people who have been abused by medical staff, and I think I will joined it. It has really affected parts of my personality to not be able to avoid being abused again and again. It shows that it is happening A LOT if there is a world wide support group for it.

Got to quit for now. the pain is too much again. I have most of my readers in my prayer journal and I am praying for you.

Blessings,

BLUEBIRDY

Posted by Bluebirdy at 17:34 3 comments  

Labels: d-ribose, doctor abuse, fibromyalgia, God's help, heart failure, pain, trigeminal neuralgia

YIPEE & YAHOO!


Hi fellow fibro-mites or fibro-mates or whatever you want to call yourselves. I have had such a dramatic improvement that I would feel like I am being very ungrateful if I didn't share my great help with others.

My sister came to visit today from out of town, and she said she could not believe the difference in how well I move and walk and that I even breathe easier and look better. I went to 4 stores with her, without a cane or walker. I have not done that in almost 8 years! I am giving credit to D-Ribose, a substance that is naturally in our bodies, but they have found people with auto-immune diseases and also multi-system diseases such as fibro, Lyme-disease, gulf war syndrome, chronic fatigue syndrome, are very low on this. It helps oxygen and nutrients get directly to the individual cells. It has cut the pain and fatigue caused from fibro in half, and increased my endurance. (Too bad it can't cut ALL my pain and fatigue in half from all my conditions.) I am hoping that with continued use, that will improve even more. It is completely natural, no side affects and no drug interactions except for insulin or diabetic medications, because it does lower your blood sugar if you are diabetic, which is a good thing. It has also done that for me.

If you try it, don't give up too soon. I took it for 3 weeks and I am not patient so I was ready to quit after 1 week, but that little voice inside told me to keep trying, since I had no bad side affects (and it seems I react to almost everything). After 3 weeks, it kicked in one morning and I woke up breathing easier and without as much burning an pain in my muscles. I take one in the morning, then about 3 or 4 p.m. when everyone seems to fade or slow down or reach for caffeine or candy or chocolate, I take one again, and I am ready to go again, as soon as it kicks in!

I pray that even one of you will have the changes that I have had! I know most of us have more than one disease, so this won't cure us, but it sure will make everything easier if even 50% of our fibro pain and fatigue is helped, won't it?
Blessings to you all!

Posted by Bluebirdy at 18:34 4 comments  

Labels: d-ribose, fibromyalgia, natural remedies

Here is a website for Americans with Fibromyalgia that might be interested in trying new medications for the disease. http://www.ifeelpain.com

Posted by Bluebirdy at 20:55 3 comments  

Labels: fibromyalgia

1. Slow metabolism 
    http://www.naturalnews.com/023452.html
2. Too many intense stresses over a long period.
3. An especially bad accident or illness or trauma from which the patient never fully recovered.
4. Environmental toxins and chemical overload.
5. Leaky gut syndrome. http://en.wikipedia.org/wiki/Leaky_Gut_Syndrome
6. Electromagnetic frequencies (EMFs)-- (there was no fibro before microwaves, cell phones, home computers, etc.  There was rheumatism that only made muscles hurt, it was not a full "syndrome" like fibro.)
7. Nitric oxide dysfunction- http://www.geocities.com/tenthparadigm   
8. Solar Flares and CMEs (http://hesperia.gsfc.nasa.gov/sftheory/spaceweather.htm)

Posted by Bluebirdy at 15:30 2 comments  

Labels: fibromyalgia

>>means "new paragraph starts here". I still don't know how to make my posts separate into paragraphs if I type them at the blog website. It will only separate into paragraphs if I send it from my email program.

>>The captions in the above picture:
>>Below the first set of brains, it says "Scans of a normal brain and the brain of a fibromyalgia patient"
>>Below the second set of brains it says "Scans of a normal brain and the brain of a CFS (chronic fatigue syndrome) brain.
>>The colored areas represent areas of the brain that are active and helping the body and brain to function at full potential. In the diseased brains, there is less activity, so our bodies do not function as well, they do not do what we want them to do, and this really accounts for the brain fog, or fibro fog, where we get forgetful and can't concentrate on anything very well and make a lot of mistakes.

>>If you want to look at that picture more closely, left click on the picture and it will enlarge.

>>See? There is a DEFINITE disease, a DEFINITE difference between a healthy functioning body, and a the way our brain makes us function if we have fibro or CFS. This test alone should prove there is a common denominator, a place to start with the research to treat this disease. It also proves it is NOT just a person complaining too much, as the New York Times insinuated today (see next post below)

>>I got it from a site that no longer exists, the website address is at the top of the picture, but it is no longer a used website. I got it more than 12 years ago, whent the internet first started, so if the medical world had information about these conditions, I wonder why it was not publicized more and why more has not been done. I know that in Canada its almost impossible to find a Dr. with enough time or compassion to research or treat difficult cases. They are even telling us which diseases or conditions they refuse to treat, and its so difficult to get another Dr, the patients can't complain. So if my Dr. refuses to treat rashes or kidney problems, then if I develop those problems, I am on my own, because I can't find another Dr. One lady told me she thinks even Mexico has better treatment in the hospitals than what I have been experiencing here.

>>I, like many or most lupus patients, have fibromyalgia on top of lupus, (and 7 other serious conditions which lupus caused) and I have been studying about it so much that I feel like I could teach the researchers a lot!! It affects the nerves, muscles, connective tissue, the parathyroid, which controls every chemical in your body and brain,and all "cycles" of your body such as when you wake and sleep, get hungry or not, run out of energy or get invigorated. Everything in our body goes in cycles, and the parathyroid helps regulate those cycles. Certain chemicals are released at certain times during the day to digest food, other chemicals to make you sleepy or stimulated, others to make you relieve yourself in the bathroom at certain times, and all those things are affected in fibromyalgia. Its not just sore muscles. Its a horrid epidemic of a disease. The medical world likes to blame the patient when they can't find the answer. They forget that even diabetes used to be classed as a form of insanity before they found the cause and test for it! There is definitely something wrong, they just have not found the test or the done enough research. It takes the average of 11 years for a person to be diagnosed with these "invisible illnesses" such as lupus, CFS or fibro. Before diagnosis, people are thought of as fakers, lazy, hypochondriacs, neurotic, anything the Dr. can blame on the patient. The patient's family and even the patient can start to doubt themselves and wonder what they are doing to themselves. I suggest a book I call my "Fibro bible". Its a book written by a Dr. who has fibro. Its called "Fibromyalgia and Myofascial Pain Syndrome" by Devin Starlanyl. She names every possible symptom and why it happens, and has chapters about how to manage almost every part of your life while living with this disease. I bought mine used online because its expensive, because its almost like a textbook. You can buy it used at http://www.half.com/, http://www.ebay.com/, http://www.alibris.com/, http://www.amazon.com/ , and I'm sure there are other used bookstores online as well.

Blessings,

Bluebirdy

Posted by Bluebirdy at 22:44 1 comments  

Labels: chronic fatigue syndrome, fibromyalgia, medical system

Hi gang;

   I get the newsletter from  the American Pain Foundation. Just now I got an alert that they need everyone's help that has fibro. It seems that some big wig Dr. wrote an article in the New York times saying that people with fibro are just complainers who won't deal with the aches and pains everyone has (which is also exactly what my rheumatologist told me...I almost kicked him so he could feel my pain)lol... and the article goes on to say....well I'm getting ahead of myself here. I am just going to copy the letter, and I ask you to use the sources below to write your own short note to New York Times to try to undo the damage that Dr. may have done, and to teach others about fibro and what it really is like to live with it. The colored sentences are clickable links so you can see the actual article and instructions on how to contact the editor or New York Times, which goes world wide! Here's the alert I got:

Blessings

Bluebirdy

 

Media Alert 

---

Dear APF Advocates,

This week, there has been much controversial media coverage on fibromyalgia and chronic pain. The New York Times published an article, Drug Approved. Is Disease Real?, which questioned the validity of fibromyalgia and chronic pain itself. The article suggested that the pain of fibromyalgia is a case of people who "obsess over aches that other people simply tolerate," and that the pain is just a "physical response to stress, depression, and economic and social anxiety." This is an extreme and harmful mischaracterization of the reality of pain.

See Background Information and Additional Media Coverage 

The public and the media need to hear from you! whether you are a person with pain or someone who cares for or treats people with pain. APF is dedicated to raising awareness of fibromyalgia and other painful conditions and the fact that people in pain have a right to timely, appropriate pain care.

Please Take Action NOW: Write a Letter to the Editor of The New York Times.

Thank you for advocating for people with pain.  Together, we will make a difference!

Best regards,
The American Pain Foundation

Posted by Bluebirdy at 14:52 3 comments  

Labels: fibromyalgia, medical system, pain

Hello all!
THANKYOU FOR YOUR PRAYERS!
~WE GOT ANOTHER MIRACLE!! We went to the hospital and instead of admitting Mom, they sent her to the outpatient clinic first, where they kept us for 7 hours, the nurse acted like she was on drugs, kept carrying messages from Mom back to the Dr. who was doing scopes on people, then we would get his opinion back that way, and she kept messing up the messages, didn't understand anything we said, we repeated things up to 6 times, I finally went unconscious from my blood sugar going too low from lack of food or water and all the stress, so they some glucose to bring me around. (And mom was the one there to be treated. Gosh...what a joke, me trying to care for HER.) She is able to do some shopping and clean house a bit (do a LOT more than me), and she can get medical care anytime so she's less apt to die than me. Anyway we got so tired and in pain and frustrated after 7 hours of this carrying messages back and forth and no Dr. seeing mom, no admitting to hospital like she was told was supposed to happen, no test, nothing...so we walked out.
It was a tough day but WORTH IT cuz mom won't be having surgery soon!
Today we start over again and I take her out of town AGAIN (did this day before yesterday) to the Dr. and hospital there...BUT THIS MEANS THE SURGERY WILL BE DELAYED!!!---Which means she will be alive for a while which means I won't be homeless. They don't do surgery in this little town I take her to see her Dr. at
Now if she can delay this surgery until my husband gets home, he can earn enough that we can continue renting the house we are in now, if anything happens to Mom. Or if the Lord can delay the surgery until other living arrangements are made for me (in case my husband doesn't come back from the war zone), that would be a wonderful gift from the lord too.
Got to drag my painful body to put all mom's luggage in the car again. (Why am I doing this when she can do it and is healthier than me and doesn't use a walker and doesn't have any muscle pain at all?) ---yeah...cuz I'm the obedient daughter that is grateful for all the years she cared for me. My brothers and sister have all told me they are really worried that I will die before Mom, because she has been served and waited on for 30 years, and I have served and waited on my first hubby and now mom until my body is falling apart.
In July when that Dr. told me I would only live for 1 year...on days like yesterday, I sure feel like its true, but I won't believe any human. God decides when I go, not man, and I have things to do yet. I hope to be here for the second coming. lol.
Now I have to start looking into getting help for myself, like some cyber-friends have been urging me to do, (been trhying for 10 years but got to keep trying)...to go to the top if I have to...but have not had enough strength for that either. I can only do a little bit of functioning each day. I wish I could afford to hire a secretary for all my taxes, the legal work to get my hubby home, and now to get help for myself. I have not even had a minute or the strength to get gifts mailed out yet. grrrrrrrr!
Wow, such a faith building experience. Now if I could just keep remembering that he is taking care of us and will even make miracles for us! It is hard for me to believe that everything will be OK, because even though I put everything into God's hands, he HAS let some very awful things happen, because that's what life is all about...so even though in my heart I know God is in control...I am always afraid of how hard the next "test" is going to be and if I am up to the challenge.
See? I told you that whenever myu cyber friends pray for me, I feel it, and THINGS HAPPEN! I know the Lord hears the prayers of this group. I have never found so many sincerely faith filled people in one place. THANKYOU THANKYOU THANKYOU for your prayers!
Love you all! Bluebirdy

P.S. Though I cried and prayed half the night from the pain, hurting too much to even get up to get my medicine, hurting too much to get back to the hospital (where they wouldn't do much anyway), TODAY I DON'T HAVE MUCH PAIN! I am ready to help Mom again!!! Usually it takes me a few days to be functional after 2 days of running around like I just had. Yeah I will be hurting when I get back from out of town again, but that's ok if God helps me recover quickly like this time! Oh Lord please help me remember that you love me and are helping me and will continue to help me!

Posted by Bluebirdy at 11:03 1 comments  

Labels: faith, fibromyalgia, God, hospital, lupus, medical system, miracles, pain, parents, prayer, spiritual experience, thankfulness

Posted by Bluebirdy at 20:14 2 comments  

Labels: depression, faith, fibromyalgia, hospital, lupus, medical system, pain, parents, prayer

Three days ago I woke up in so much pain I didn't know how I would finish the urgent things that need done. I was considering going to the hospital. I finally got upstairs and Mom was also very sick and needed an ambulance, so I helped her get ready to go in the ambulance and went to be her advocate (if you don't take someone with you to this hospital, they neglect you.) I was glad to do it but wishing I had someone to take me to the E.R.
They sent her home and told her to go back the next day if she still didn't have a BM. Today is one month from the day Dad died, and today I was sick enough for the hospital again, but again Mom needed to go, so I took her, and they admitted her. This time though, I asked at the front desk if there was any way if I could sign myself in, but be seen in my Mom's room, instead of being separated in my own bed for many many hours. Usually they won't let me be with Mom if I ask that, but this time they did, so I got the medical help I needed while taking care of Mom.
She is talking about death a lot, and if the Lord is planning on taking her soon, I really hope He send a few more angels for Doug and I to bear it spiritually, emotionally and physically, financially. We will both be homeless if Mom dies, because disability income is not enough to live on alone.
So we won't be making any Christmas dinner. We will be opening gifts at the hospital and maybe eat lunch in the cafeteria there. They have turkey dinner that day.I hope Mom is here for 1 more Christmas at least.

Drama #2
My husband was near a building that exploded today due to a suicide bomber. God protected him AGAIN! He got a "percussion injury", where the air that is blasted hits you like a rock and makes a huge bruise and makes you fly through the air, and his ears are still ringing so he might have slight hearing damage. I am so sorry he has to live like that. I want him HOME and safe!...but I would not be very helpful to him right now. Maybe he is being delayed because we can't help each other the way we will need help right now. He will have PTSD for sure, the longer he stays, the worse it will be. Today he said he didn't know how he could stand this anymore, but we just do. We just keep waking up the next morning and we keep surviving.
Maybe he is being delayed by God because no man can live in a house with this much drama and crisis all the time. I don't want to ruin his life and make him unhappy by the hard lifestyle of living with a sick wife. He deserves children and I can't give him that. I'm finished with that. So hard to wait for him, and to wonder why the delay in him getting home.
I have an Aunt who barely ever talks to us because we have more dramatic crisises in 1 year than she has ever had in her life and she thinks its not possible or that we are making up all these things. Her crisis is to get a grass stain on her white pants.
I am SO exhausted, in so much pain, no one to help me or even to help Mom so I can rest enough...one of those times that I feel like I could die soon, but I won't. Lupus is a LONG severely painful existence. Lupus gets worse with stress, shutting down more organs. As soon as it hits the heart or liver or kidneys, you are getting close to death. My brother wonders about him dying soon too because all this stress is making his heart do crazy things...so wouldn't that be weird if all 4 of us died within a year or so of each other?
I thought God sent me a husband for strength to go through all these things with, but if I go through all these things alone, it shows I do not need a husband...but I would like the companionship. Maybe God is waiting until both parents have passed away, so I won't be lonely, but then Mom won't have to deal with living with a son-in-law. She really can't live alone anymore so we'd have to live with her to help her. I totally overthink things and constantly think "why". It wears me out. I'm going to go "lay me down and bleed awhile, then rise and fight again."
MERRY CHRISTMAS EVE-EVE. LOL
Bluebirdy

Posted by Bluebirdy at 22:58 2 comments  

Labels: faith, fibromyalgia, hospital, lupus, pain, prayer

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Labels: faith, fibromyalgia, lupus, pain, prayer

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Labels: faith, fibromyalgia, lupus, pain, prayer

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Labels: faith, fibromyalgia, lupus, pain, parents, prayer

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Labels: chronic illness, faith, fibromyalgia, humor, lupus, pain, prayer

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Labels: angels, faith, fibromyalgia, God, joy, lupus, pain, prayer

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Labels: chronic illness, faith, fibromyalgia, joy, lupus, pain, prayer, support groups

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Labels: faith, fear of dying, fibromyalgia, heart failure, lupus, medical system, pain, positive thinking, prayer, terminal illness

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Labels: dying, faith, fibromyalgia, lupus, medical system, pain, parents, prayer, spiritual experience