Emily's Story

Cancer & Wellness Links, Info & Resources

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Welcome to Jellymate.info, Thank You for visiting!

This site was created specifically to help my friend Emily get through a very hard time in her life. This website coupled with a facebook group/cause has been extremely helpful in generating support and friendship! Simply amazing people! Unfortunately, Emily's condition continued to degrade as she has been diagnosed with cancer. I have now started implementing links to more websites in order to give you a chance to become familiar with alternative methods of healing. It is sad to have to call natural treatments "alternatives" considering that 90% have been around since before the medical industry ever existed. It's easy to find resistance to lead people away from natural treatments, you can thank the pharmaceutical industry for that as they staff people specifically for this purpose. The fact is, no one treatment will ever work for all people, this includes natural/alternative treatments as well as synthetic/conventional means. All people respond differently to any given substance. Finding what works for you or your loved-ones can be a daunting task if undertaken alone. Above all, have faith that all is as it should be! May Emily's story be another candle in this dark world of "disease-care" (as opposed to health-care). I welcome fellow investigators to share links with me so that I may share them here. Jan 04 2010

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EMILY'S STORY:

My name is Carl. Some of you may know me, some of you may not. It’s hard to know where to begin except that this story is about Emily. That is her in the pictures here with her son:

First let me explain Emily’s situation. At the time of writing, she is 29 and has been suffering from lupus nephritis for over 13 years. Since she was in high school she has had problems with her health that have been so severe that she could not live a normal life. She could not hold a steady job because of her illness. She was forced to go on social security just so she could get by. For several years she was doing relatively okay. She slowly worked her way up to working a part-time job at around 25 hours a week. Although her health has never been nearly as good as mine and probably yours, she still managed to try living a “normal” life.

Around July of ‘09, she received a letter from social security stating they would no longer be sending her checks and issued her a bill for around $25,000 saying she was overpaid. The sudden and unexpected loss of income was financially and emotionally devastating. Realizing she could no longer pay her mortgage, her health immediately began deteriorating. I assured her that it would be okay because I was working and getting lots of hours to cover the expenses. Ironically, I was laid-off my job less than two weeks after this. I applied for no less than 25 jobs in several different fields of work and sadly received only two, yes TWO interviews which were fruitless. In all my life I have never had so much trouble finding a job. I finally resorted to working in a fast-food restaurant. These circumstances created an ever-increasing health problem for Emily. Stress over finances was paramount for destroying her health. Although it was very difficult for her, Emily began to increase her hours at work to try and hold her finances together but it was no use, she simply had less money than bills.

In the midst of all the stress and struggling, one night Emily awoke with severe pain in her low back/butt that radiated all the way down her left leg. The pain was very severe. We assumed it was a sciatic nerve problem. The next day she was okay and we wondered what had happened. The next night it happened again.. and again. Eventually the pain made itself present during the day until it was ever-present. We tried lots of massage and hot baths but nothing really helped. The pain was so severe she began calling off work because she just couldn’t walk for more than a minute at a time.

She went to a local family physician who looked at her and diagnosed sciatic nerve pain. Emily was given pain-killers and an order for physical therapy. She started going to physical therapy twice a week between working and calling off. Every single physical therapy session made her pain worse. The therapists had no explanation and refused her any more treatment. Going back to the physician she was ordered to have an MRI performed. The MRI was denied by insurance, their reason being she had to go through 8 weeks of physical therapy before they would approve it, even though the therapy was making the pain worse!

She then found a great family doctor (by referral) who also ordered an MRI (again denied) as well as various labs for blood-work. A few days later Emily got a call from the doctor saying he had reserved a room for her at the hospital because her blood labs were alarmingly bad. Her kidneys were failing and her blood-count was extremely low.

While in the hospital, she was seen by several specialists including a nephrologist, rheumatologist and pain doctor. She had an x-ray, ultrasound, MRI (finally), tons of blood-tests, was given blood-transfusions, iron sucrose, methylprednisolone, celcept, erythropoetin, tramadol, morphine, darvocet, antibiotics, zofran, and more. She was told her kidneys were barely functional and that she had spinal arthritis which caused a tear in the spinal ligament, a slight bulge and a slight herniation. The pain doctor explained that the muscles around the tail-bone/sacral area were probably compensating for the tear by constantly flexing which in turn was pinching the sciatic nerve thereby causing her the extreme pain in her leg (although we now know it's a fractured hip-socket).

Finally she was released because her labs starting coming back somewhat normal. At home she continued to take celcept as prescribed by the nephrologist (celcept is a drug for immune-system suppression). It was given to her in order to help keep the lupus from attacking her kidneys. All this time her pain was getting worse and becoming more and more extreme. Emily was unable to sleep through the night. The pain in her leg was nearly constant and the only thing that helped was darvocet but it wasn’t nearly enough. The pain doctor gave her lidocaine patches to numb her butt and requested she make visits to his office to have steroid injections into her back. These injections are much more painful than the sciatic pain, but were well worth it because it offered her almost a week of relief per shot . Unfortunately no one offered any other treatment options for her pain because they simply had none.

The day after she was released from the hospital, her arm began to swell, turn red and become very stiff. We went to an urgent care where after 4 hours she was told to go to the ER. At the ER she was diagnosed with a severe IV-site infection from her last hospital stay. They began an IV of heavy-duty antibiotics which caused an immediate allergic reaction in Emily. They switched the antibiotic and moved her upstairs into another hospital room. She was given more drugs and lab tests. After a few sleepless nights in the hospital, we went home again with a prescription for the antibiotics.

By this time Emily had completely used all her sick days and vacation days from her job. Her condition was so bad that she had to begin leave-of-absence. Meanwhile, all these doctor and hospital visits were severely interfering with my ability to work. I was coming in late and calling off every week. All the stress and pressure was too much for me let alone Emily. Meanwhile, while she was taking celcept, Emily and I both noticed a severely dramatic decrease in her health..

First she literally stopped eating completely and then was unable to drink any kind of water or liquid without immediately vomiting. She was unable to take any medication because she couldn’t keep anything in her body. Although she had no food or water in her system she began to vomit a green substance continuously. She was very near death at this point and I pleaded for her relief. Even now just thinking about it makes me cry because it was so horrible. After a few days of being off the celcept but still vomiting the green substance, she was able to sip on some Vitamin Water (thank you Glaceau!) and regain some life.

With the celcept out of her body her health rapidly began to improve and she was eating again after another day. She vowed to NEVER take another immune-suppressing drug ever again. Still, things were not looking up. I continued to work while she stayed home alone and suffered. She could barely get herself out of bed in order to use the bathroom. She certainly was unable to make meals for herself. Still I had to work because we could not afford the bills as it were. I rushed home every day to be by her side.

About four days after she had recovered from the celcept, she began having sharp, shooting and burning pains in her right shoulder, breast, chest and back. There was no obvious explanation for this new complication. One night I made her a bath and was helping her into the water when I noticed a red patch of skin on her shoulder blade where she was experiencing the pain. It looked like a rash. We didn’t know what it was or where it came from but we kept our eyes on it.

The pain continued and began increasing over the next few days. She refused to see the doctor or go to the ER because she was completely fed-up and sick of the hospital and their drugs. Then the rash began turning into blisters and spreading until it solidly covered her entire shoulder blade, under her arm and around to the front and completely covered her breast. The pain was even more unbearable than anything else she was currently experiencing.

We had just seen her kidney doctor the day after her rash started and were informed that Emily was entering the final stage of kidney failure and were told she needed to begin dialysis and start looking for a donor. This devastating news filled us with emotional torment as we felt hopelessness all around. In the meantime, the nephrologist ordered a kidney biopsy. We went home and tried to continue life. I went back to work again and was told to go home and get my hat because I forgot it. When I came home I found Emily on the floor sobbing in pain as she tried to get up to use the bathroom. I was completely wrecked to see her in this condition and called off work. That was my last day working because they fired me.

Emily finally agreed to go to the ER and was immediately diagnosed with shingles. The doctors in the ER gathered around her to witness what they all claimed to be the worst case of shingles any of them had ever seen. After learning that Emily had discontinued the celcept, one of the doctors remarked “it’s a good thing you stopped taking it because you’d probably be dead now.” She was given anti-virals, steriods and pain killers and sent home. Emily took two of the anti-virals before becoming sick from them. We didn’t even fill the prednisone prescription because we already knew it makes her really sick. And the painkillers they gave her did nothing for the shingles pain. It was very clear that modern western medical drugs were only making Emily sicker and sicker.

Now being jobless I made use of my time to investigate and research everything I could find about her various conditions. I searched endlessly for alternative treatment options and natural remedies. I began finding many things, especially herbal remedies. I went to health food stores and talked with the employees. I managed to get an enzyme product which was allegedly more effective for treating shingles than the anti-virals. It must have worked because after 3 days the virus seemed gone and the blisters began to dry and recede. The nerve damage resulting from the infection was very severe. This nerve damage is called post-herpetic neuralgia and is said to be untreatable. We were told that the pain and damage could last for months or years. Surgery was the only option anyone offered us (to burn the nerves completely out).

The pain Emily experienced from PHN was so bad that her doctor finally prescribed her with percocets. She had to take 3-5 a day in order to manage the pain! Thankfully she was pain-free for the first time in 3 months but at the cost of more health problems. She began sleeping all day and when she was awake she would be incoherent. She then could not eat and began vomiting again. Every day was a percocet haze causing her intense nausea, complete lack of appetite, loss of bowel movements and abdominal pain. After three weeks of taking percocet we realized her pain was not decreasing and was only being masked. We went back to the doctor and she was given anti-depression pills (cymbalta) as an alternative painkiller. Because of more side-effects, she did not take those pills and instead we began breaking the percocet pills in half. Slowly she weaned herself down to two or three half pills per day until they were all gone. Although her pain continued again, things were better while off the percocet.

After more searching I found a natural cure for the shingles neuralgia (PHN) in the form of an herbal oil blend. I then ordered some Ayurvedic herbal blends from India for her kidneys (allegedly these herbs have been used for over 7000 years to treat kidney problems with at least 70% success even in end-stage renal failure). I continued to search and find information. By this time, Emily had several of the steroid injections (from her pain-management doctor) into her back which seemed to relax the muscles around her spine enough to be pain-free for a week or so.

In the midst of everything, Emily developed ovarian cysts which were very large and very painful. She had to get an ultrasound to detect them and was scheduled back for another ultrasound after 6 weeks. She never did make that appointment because of the other problems that came up.

Every week Emily had to have her doctor extend her leave-of-absence. Every week was another battle with the insurance company. Once, Emily actually tried to go back to work for fear of losing her job and health insurance all because her doctor did not authorize more LOA (my personal opinion was that he bent to the insurance company because he did not actually perform a physical examination of Emily, just gave the receptionist a work release note). After two hours at work she was sent home after vomiting profusely. Going back to the doctor’s office again, he said it was obvious she was in no condition to work. She is very far from being able to work again and her health condition is very far from a full recovery.

At this point, I came across an herb which is shown to balance the immune system and is a highly effective treatment option for anyone with an autoimmune disease like lupus. After reading about Emily’s story, a health supplement company donated a bottle of this herb to Emily. The herb is called “kalawalla” and is mixed with licorice.

Next, Emily received two blood transfusions at a local hospital. She had a type & cross prior to the transfusion and her blood was already so low that apparently the extra blood drawn was too much of a strain on her body (she had less than 50% of her blood from the lupus/anemia attacking her blood). That night Emily began losing consciousness, lost all color in her skin and was gasping deeply for air. I was terrified and was ready to call an ambulance but Emily pleaded that I did not. She’s had enough negative experiences being in the hospital overnight or for any longer period of time. I told her she better hold on! She did and the next day we received a ride to the hospital where she had the 4.5 hour-long transfusions. After the transfusions she once again had her color and was doing better. It was one of the scariest nights I’ve had with Emily since the celcept incidence.

After missing one of her steroid shots and suffering for over 5 weeks, she finally was scheduled back for another injection. This time she received a mix of several natural and homeopathic injections instead of the steroid. We learned that the steroid only relaxes the muscles (with side-effects) whereas the homeopathic relaxes AND heals the area. I spoke with the doctor afterward and asked several questions related to Emily’s case. He suggested a raw diet, natural and herbal treatments among other things. He also said the drugs commonly used to control lupus are what typically causes renal failure and other problems!

Next, Emily began receiving erythropoietin shots. Erythropoietin is a hormone that regulates red blood cell production. Every week she had another injection until her levels are normal again. About 10 years ago she received a series of these same shots and was able to maintain her blood levels for many years. We hoped that this would do wonders for her energy level and her ability to heal but because of the more recent problems it was too hard to tell.

A couple weeks later she told her doctor about a lump that had developed over the last several weeks on her neck. He said it was looking like a over-swollen lymphnode that was in the wrong part of her neck. He was very concerned about it and commented that it’s possible she may have a chronic infection of her body (like valley fever) which is the real cause of all her problems. He ordered more labs and a CT scan.

The CT scan revealed a fracture in her hip where all her pain has been radiating all these months! It’s no wonder now why she cannot walk. The scan also revealed several lumps in her chest and abdomen. The results were sent to a hematologist who Emily then met with and ordered a room at the hospital to have biopsies and more blood transfusions. While in the hospital she had a bone biopsy of her right hip, an ultrasound of the heart and the lump in her neck (partially) removed to be biopsied. She handled the surgery very well. The bone biopsy was almost immediate and came up negative.

After a couple weeks we met with the hematologist to get the biopsy results for her neck lumps. They removed three fused lymph nodes and found it to be Hodgkin’s Lymphoma. The hematologist wanted to immediately begin up to 8 months of chemotherapy treatments and get Emily back in the hospital to have lung and heart tests and blood labs. He informed Emily that there is a great success rate for “curing” this type of cancer with chemotherapy. His exact words were “it’s a hopeful cure”.

So we finally learned that Emily has a fractured hip which is the main cause of her constant pain. The hip will not heal and continues to get worse apparently because of having a severely compromised immune system (because of both lupus and now cancer). So far the doctors haven’t really said anything about helping her hip, however they have offered radiation as a temporary way to manage the pain. The lupus was/is the first and foremost problem for Emily. The lupus causes her own immune system to attack other cells/organs of her body. Her kidneys have been very badly damaged in this case (nephritis), along with her red blood cells (anemia), joint tissues (rheumatoid arthritis) and most likely the degenerative spinal arthritis. Now with the introduction of Hodgkin’s lymphoma she has cachexia (wasting away of the body) and spreading tumors in her lymph system. She is currently about 30 pounds below a healthy weight with extreme fatigue and nausea.

There are many concerns for Emily’s recovery. Her current main life-threatening conditions are nephritis, anemia and cachexia (complications of both lupus and cancer). Given more opportunity to spread, death from cancer complications could occur (according to the hematologist) within a year. There is no known medical cure for lupus, only treatments for certain symptoms. The only medically offered treatment option for cancer is chemotherapy (or severe chemo with stem cell transplant). The only medically offered treatments for kidney failure is a transplant, dialysis or extremely toxic drugs to prolong kidney function. The anemia is treated with blood transplants (which wear off quickly) and E-Poetin shots (which is actually a natural hormone) to help rebuild hemoglobin.

The doctor had no tangible answer in regards to how chemotherapy might react with lupus conditions and her weakened and self-defeating immune system. Personally speaking, this seems to be an important consideration which seemed to be simply ignored by the doctor. In fact, Emily has had chemotherapy (methotrexate) in the past as an experimental procedure for her lupus which only debilitated her more. Also, I personally “believe” (based on corresponding information and in correlation with how she has progressed) that the final straw for cancer to take hold of her body was in the aftermath of CELLCEPT (mycophenolate), a drug used to destroy (“suppress”) the immune system in order for transplanted organs to not be rejected (in Emily’s case it was used to prevent lupus from attacking her kidneys). This is not to say the cancer was caused by cellcept, but to illustrate the (hopefully obvious) role it played by allowing pathogens and cancer cells free run of her body.

I began spending a large portion of time educating myself on the topic of cancer. I have passed along as much information to Emily as possible and as requested by her. I can be overbearing at times for her with information and personal suggestions, but please know that she easily rejects anything from me that she doesn’t want. She is intelligent and capable of making informed decisions on her own. With that being said, she has rejected chemotherapy as a means of treatment. For one thing, she does not believe the success rate for “curing” this cancer is accurate, and further she feels her case is particularly sensitive and would drastically reduce her chances of survival of chemo itself.

Everyone keeps saying how “chemo isn’t like it was 25 years ago” as if to imply safety. In fact, the only way they may administer chemotherapy is if Emily has heart and lung tests to make sure her body can handle the damage these organs would sustain from chemo. Then they have to install a port because her risk of infection is too high to give her an IV each time. Then she would be administered various drugs alongside chemotherapy to deal with the immediate side effects of the chemo.

What it boils down to (for Emily) is more problems, more pain, more sickness and more of just wanting to be dead already. 10 years of dealing with debilitating disease and pain mixed with various drugs and treatments of which 95% failed her or caused more problems. There is compelling evidence to suggest that nephritis is much more a side-effect of the drugs used to treat lupus than from the actual lupus itself. In Emily’s case, years ago she was put on the drug prednisone to deal with lupus and almost immediately began urinating blood. She discontinued the drug and the red urine immediately stopped. When she reported the side-effects she was told “there are no such side effects”. And then her kidneys began failing.. you do the math.

So with Emily’s track-record for being a very UNsuitable western medical test rat, it seems obvious to HER (and others) that she would probably die as a result of chemotherapy treatments (and be suffering the whole time). Emily does NOT desire a life which has been artificially and temporarily extended by using synthetic drugs which will no doubt make her extremely sicker than she currently is.

No one has adequately addressed how her lupus and kidney problems would play into chemo. And as far as the fractured hip, they say that “it will probably get better if there is no more cancer”. But could it not become worse during treatments when her immune-system and every other cell in her body is being ravaged by the chemo? I guess this is one of those exceptional cases where medical practice really is nothing more than ‘practice’.

Emily has SEVERAL options available to her instead of chemo or other synthetics. I am in awe of the number and variation of treatments that have been used successfully to treat cancers. Now, please keep in mind that the FDA seems to have a big problem with certain natural products which may be considered highly effective and without side-effects. And not only the FDA but also the AMA (and especially) “big pharma”. Any rational and intelligent person is more than capable of educating themselves about almost any given topic, but it’s NEVER enough to rely on only a small source of information or simply a television set. If you really want to learn about something, you don’t just consult one person, even if that person is an expert. You will find a variety of perspectives which act like a compass to guide you to what makes sense, what is effective, what will work especially for what particular objective you are trying to achieve. You will begin to see several parallels and the picture starts to form. You will begin finding things that outrage you for various reasons (whether or not you personally believe in the things you find). It all amounts to lots and lots of money for those concerned.

Simply stated, natural cures and treatments would bankrupt the pharmaceutical world and lots of people would lose their careers, cars, yachts and homes along with their powerful grasp on America at-large. Yes I certainly sound biased! I challenge you to educate yourself in these regards, though those who wish to create controversy over natural medicine seem to carry the conscience of ignorance (or a very large salary).

If you have a desire to learn more about natural ways of healing and maintaining wellness as well as becoming aware of the greater picture tied into the medical systems then check out the ‘Cancer & Wellnes Links, Info & Resources' page!

If you would like to read all the original postings from which the version you just read was condensed into, please visit the archive!

We Thank You dearly for reading Emily's story.

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