I'm on a mission to share my story and educate others on a nightmare called Lupus. Summer of 2008, I become extremely ill. Winter came and I felt a little better. Doctors said it was all in my head & nothing was wrong. Until summer of 2013 when I laid in bed & thought I was dying. Found out I had Lupus & Anti-Phospholipid Syndrome. My immune system is constantly attacking my organs. I'm now living the intense nightmare of these auto-immune diseases
Life, I am the new year.
I am an unspoiled page in your book of time.
I am your next chance at the art of living.
I am your opportunity to practice
what you have learned about life
during the last twelve months.
All that you sought
and didn't find is hidden in me,
waiting for you to search it out
with more determination.
All the good that you tried for
and didn't achieve
is mine to grant
when you have fewer conflicting desires.
All that you dreamed but didn't dare to do,
all that you hoped but did not will,
all the faith that you claimed but did not have -
these slumber lightly,
waiting to be awakened
by the touch of a strong purpose.
I am your opportunity
to renew your allegiance to Him who said,
'behold, I make all things new.'
It's a mysterious disease that often goes undiagnosed for years. Once a patient is diagnosed, they've often never heard of the disease, and neither have their family and friends. Yet lupus is a debilitating disease with many masks.
"We call it the invisible disease," Hui-Lim Ang, founder of Colors of Lupus, a local non-profit organization dedicated to "dispense, deliver and provide immediate physical services and support" for patients of lupus, as well as provide a safe place for patients to share their stories.
Lupus is an autoimmune disease that takes on several forms. Many who have lupus have been to at least four doctors to heal a host of ailments separately that lead to lupus as the disease attacks the skin, joints, the heart, lungs, blood, kidneys and brain, according to the Lupus Foundation of America. Lupus can be fatal, usually attributed to cardiovascular diseases, although with recent medical advances, deaths are becoming increasingly rare.
There are different types of lupus. Systemic lupus accounts for the bulk of cases at roughly 70 percent, which can cause problems in a major organ, such as the heart, lungs, kidneys or brain.
Cutaneous lupus, in which only the skin is affected, shows up in approximately 10 percent of all lupus cases.
Colors of Lupus estimates 13,500 people in Nevada are currently diagnosed with lupus. While lupus is a widespread disease, awareness of the disease lags behind many other illnesses, she said.
Lupus often mimics or is mistaken for other illnesses, making diagnosis difficult. Common complaints include fever, joint pains, muscle pains, unexplained fatigue and temporary loss of cognitive abilities.
"It imitates other diseases and it can be a long, long time before someone knows (they have lupus) and gets the right help," Ang said.
The non-profit began in 2007 and opened its doors in April 2008 at 2400 Tenaya Way. It began when Ang saw that the local support groups simply weren't enough to fulfill the needs of valley residents with lupus.
"There is not much known about lupus," Ang said. "I saw a need and I saw how much it could help here."
Lupus or SLE (Systemic Lupus Erythematosus) is a chronic autoimmune disease that can affect any connective tissues of the human body, according to The Lupus Foundation of America, which estimates that 1.5 million in the United States have been diagnosed with some form of the disease. Of those, 90 percent are women. Lupus is usually diagnosed between the ages of 15 and 44.
The patient's immune system attacks the body's cells and tissues, resulting in tissue damage and often painful inflammation.
The quality of life is the underlying message of Colors of Lupus, Ang said.
"Our mission is to help reclaim the loss of quality of life that this disease has taken away from people," she said. "While LFA and others continue to look for a cause and a cure, we are trying to help. The point is people don't realize how disabling this disease is."
More than half with lupus went undiagnosed for at least four years, according to a recent LFA survey. Almost half of those surveyed reported that they saw three or more doctors before obtaining a correct diagnosis of lupus, usually a rheumatologist, a medical specialist who treats diseases of the connective tissue. "What happened to the people of lupus, they have no where to go to," Ang said. "They have the support groups, but some are so sick they don't want to come out. But if you give them a reason to come out and ways on how to cope with what they have and teach family members, then you build a true support network to help them cope and reclaim their quality of life."
Colors of Lupus has 77 members, 21 of whom suffer from lupus.
"We hardly see them because they are so sick," Ang said, however they benefit from the direct contact with doctors knowledgeable about the disease.
In 2007, local internist Jun Aragon, M.D., was invited by the Executive Director of Colors of Lupus - Nevada, to be one of the board members. He provides free medical consultations to patients with Lupus who are referred by the organization.
"There is no one specific cause of this condition," Aragon said. "Researchers have found evidence to support several likely possibilities, and some believe that the cause may vary from one person to the next."
However there is activity in the medical industry to remedy that, he said.
"Recent studies are focusing on the following: immune system dysfunction, genetic susceptibilities, environmental triggers, and hormonal influences," Aragon said.
Nonsteroidal anti-inflammatory drugs and antimalarials may be prescribed by the doctor to treat symptoms of lupus and keep flare-ups at bay.
"When flare-ups occur, they are treated with steroids," he said. "The doctor may also prescribe certain anti-rheumatic drugs in order to reduce the number of flares, the disease process, and lower the need for steroid use.
Chronic pain affects a large number of patients of lupus, which sometimes call for stronger prescription pain killers.
What can be frustrating for a lupus patient, and their partners, is that the disease is so unpredictable. After a flare-up, that can include something as serious as a stroke; a patient can go into remission for a decade or more.
A dose of education and early intervention can offer hope.
"With early diagnosis and treatment, over 90 percent of patients may survive for more than ten years, and many can live relatively without symptoms," Aragon said.
If your doctor suspects lupus, they will usually look for signs and symptoms of connective tissue damage and inflammation, as well as abnormal blood tests, he said. Lupus may be gene related as the LFA found 20 percent of people with lupus had a parent or sibling with lupus or may develop lupus. As a parent with lupus, the outlook is good in that only about 5 percent of children born to parents with the disease will get lupus.
Treatment is mainly symptomatic as there is yet no cure for lupus. It is difficult to determine the annual number of new lupus cases, or the number of individuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span.
Lupus is not understood well enough to be prevented, Dr. Aragon said.
"However, when the disease develops, quality of life can be improved through flare-up prevention and early treatment," he said.
A main change for most lupus patients revolves around their daily routine.
"Lifestyle changes play a significant role in the treatment of lupus," he said. "Exposure to sunlight, certain drugs and chemicals that are known to exacerbate the disease should be avoided. Dietary changes, towards a low fat, mostly strict vegetarian, wholesome diet, may also lessen the symptoms or even induce a remission."
Standard preventive measures, including screening for related medical conditions such as (cardiovascular disease, infections, osteoporosis, and cancer) may be necessary to deal with the increased risks due to the side effects of medications.
The Lupus Research Institute, the world's leading private supporter of innovative research in lupus, recently announced Benlysta (bmumab), the first successfully tested new drug for lupus treatment in over 50 years, Dr. Aragon said.
"More research studies are being conducted in the hunt for solutions to this complex and dangerous autoimmune disease," he said.
Colors of Lupus hopes to be a big part of the solution, at least locally.
"As we grow we hope to be able to donate part of our proceeds to research," Ang said .
Grapes -- along with their leaves and sap -- have been traditional treatments in Europe for thousands of years. Grape seed extract is derived from the ground-up seeds of red wine grapes. Although fairly new to the U.S., grape seed extract is now used to treat a number of diseases.
Grape seed extract seems to be an especially valuable anti-oxidant for lupus patients. Users claim that it counteracts inflammation, decreases allergic reaction, and repairs damaged collagen (connective tissue.)
Some people get immediate results. Some take anti-oxidants for weeks before they experience improvement.
One woman with joint pain did not notice a benefit from grape seed extract until after four months of continued use, but since then has had very little pain. Grape seed extract or other anti-oxidants must be taken on a regular basis, not just when joints hurt.
There’s strong evidence that grape seed extract is beneficial for a number of cardiovascular conditions. Grape seed extract may help with a type of poor circulation (chronic venous insufficiency) and high cholesterol. Grape seed extract also reduces swelling caused by injury and helps with eye disease related to diabetes.
Many people are interested in grape seed extract because it contains antioxidants. These are substances that protect cells from damage and may help prevent many diseases. However, it’s still too early to say whether the antioxidant properties of grape seed extract really benefit people. Researchers are studying grape seed extract to see if it might lower the risks of some cancers. For now, the evidence is not clear.
Grape seed extract has been studied for use in many other conditions -- ranging from PMS to skin damage to wound healing --
Bovine colostrum is also used for boosting the immune system, healing injuries, repairing nervous system damage, improving mood and sense of well being, slowing and reversing aging, and as an agent for killing bacteria and fungus.
Colostrum knocks out intestinal inflammation. Colostrum (although not milk) might help protect the stomach from damage caused by anti-inflammatory drugs. It has been hypothesized that colostrum's growth factors help stimulate the stomach to regenerate.
If more individuals understood the value of colostrum for use with lupus, they might be able to avoid some of the consequences of traditional drug therapy and gain more long lasting relief from symptoms. Colostrum is helpful for the lupus patient in a number of ways:
1. It contains numerous anti-inflammatory compounds. Many individuals find colostrum more helpful than the anti-inflammatory drugs known as NSAIDS (non-steroidal anti-inflammatory drugs) for relief of joint pain and swelling.
2. Colostrum contains rejuvenating compounds which help restore the integrity of the
intestinal tract. Often the restoration of a healthy gastrointestinal tract is enough to
provide relief from the symptoms of lupus. This is due to the relationship between the
lining of the intestinal tract and autoimmune responses. A healthy intestinal lining is one
of the best protective mechanisms against infection, particularly, yeast infections and
salmonella.
3. Colostrum contains a compound known as PRP which has been found to help balance
the overactive immune response with autoimmune diseases.
4. Colostrum supports healthy levels of serotonin - the feel good hormone - thus
overcoming depression which is so common with chronic health problems.
5. Colostrum supports overall hormonal balance. Many women discover relief from
PMS and other indicators of hormonal imbalance with the use of colostrum. Recent
studies have verified a connection between the hormones and the immune system and
have identified a relationship between the female hormone, prolactin, and lupus.
Hormonal balance may play a particular role in the relief of lupus symptoms.
We may never completely understand the ways in which colostrum aids autoimmune diseases
such as lupus, but experience is a good teacher. And experience has taught me and others that colostrum can be a big part of the puzzle when it comes to helping the sufferers of lupus.
The most severe case of lupus I have ever dealt with was a young woman in her early 20's. The
disease had already destroyed her kidneys and she was undergoing regular dialysis. She also had extreme lung damage and had to use inhalers frequently. Her bowels were not functioning very well and she was losing weight rapidly. Her life expectancy was short when she began taking large amounts of “whole” colostrum. However, after several months, she was completely off dialysis and her kidneys were functioning again. She no longer needed inhalers and she was beginning to put on weight. She eventually went into complete remission and today she is
Colostrum is a milky fluid that comes from the breasts of humans, cows, and other mammals the first few days after giving birth, before true milk appears. It contains proteins, carbohydrates, fats, vitamins, minerals, and proteins (antibodies) that fight disease-causing agents such as bacteria and viruses. Antibody levels in colostrums can be 100 times higher than levels in regular cow’s milk. People originally got interested in bovine colostrum because of the high antibody levels. They thought that the antibodies might prevent intestinal infections in people, but they seem to be wrong. Some athletes use bovine colostrum to burn fat, build lean muscle, increase stamina and vitality, and improve athletic performance. Bovine colostrum is not on the banned drug list of the International Olympic Committee. Bovine colostrum is used in the rectum to treat inflammation of the colon (colitis). Researchers have created a special type of bovine colostrum called “hyperimune bovine colostrum.” This special colostrum is produced by cows that have received vaccinations against specific disease-causing organisms. The vaccinations cause the cows to develop antibodies to fight those specific organisms. The antibodies pass into the colostrum. Hyperimmune bovine colostrum has been used in clinical trials for treating AIDS-related diarrhea, diarrhea associated with graft versus host disease following bone marrow transplant, and rotavirus diarrhea in children.
Turmeric, an orange-colored spice imported from India, is part the ginger family and has been a staple in Middle Eastern and Southeast Asian cooking for thousands of years. Whatever way that turmeric is consumed it will benefit both the digestive system and the liver.
Turmeric is recommended for chronic digestive weakness and/or congestion. Take twenty minutes before meals, especially meals that are high in protein and/or fat. It is beneficial for people who feel tired after consuming meals or who experience gas and bloating.
Turmeric is anti-inflammatory to the mucous membranes, which coat the throat, lungs, stomach and intestines. Turmeric decreases congestion and inflammation from stagnant mucous membranes. People with the following conditions could benefit from regular use of turmeric: IBS (Irritable Bowel Syndrome), colitis, Crohn's disease, diarrhea, and post-giardia or post salmonella conditions. It can also reduce the itching and inflammation that accompanies hemorrhoids and anal fissures. This herb would be useful to follow up antibiotic treatments, in addition to acidophilus and garlic. It helps to improve the intestinal flora and acts as an anti-bacterial.
Another wonderful aspect of turmeric is its beneficial influence on the liver. Spring (and late winter) is an important time to consume herbs and foods that strengthen the liver, because spring is the season which rules the liver and gallbladder in Traditional Chinese Medicine. Turmeric shares similar liver protectant compounds that milk thistle and artichoke leaves contain. It is said to shrink engorged hepatic ducts, so it can be useful to treat liver conditions such as hepatitis, cirrhosis, and jaundice. Turmeric can also benefit skin conditions including: eczema, psoriasis and acne, for it is a potent detoxifier.
Turmeric is an antispasmodic to smooth muscles so it reduces digestive and menstrual cramping. For women who experience monthly menstrual cramps, try consuming turmeric extract or bitters twice daily for two weeks prior to expected menstruation. It should reduce the severity of cramps, if not alleviating them completely. Of course, diet and lifestyle have a profound influence on the menstrual cycle, but turmeric is a great addition.
Bromelain is a collection of protein-digesting enzymes (also called proteolytic enzymes) found in pineapple juice and in the stem of pineapple plants. It is primarily produced in Japan, Hawaii, and Taiwan. It was long used by Native Americans to cure a variety of ailments such as sore throat and seasickness, it was also used as a diuretic, an aid to digestion and to treat wounds and inflammation. Once in the blood, bromelain appears to reduce inflammation, "thin" the blood, and affect the immune system. According to the University of Maryland Medical Center. Bromelain not only helps reduce inflammation but also aids the body in the digestion of protein. Bromelain supplements are as helpful as eating fresh pineapple and may be made even more effective by consuming them with turmeric supplements, which also reduces inflammation. If you take them as supplements, consume the bromelain between meals rather than with meals for the best results to reduce inflammation. If you prefer to eat pineapple, choose only fresh fruits and eat the fruit or juice it to obtain the most bromelain. Both bromelain and turmeric can thin the blood, so speak to your health provider if you take blood-thinning medicines before starting these treatments. In Germany, the use of bromelain to treat inflammation and swelling after surgery (particularly surgery on the sinuses) was approved in 1993. It also has been shown to boost the ability of the body to absorb antibiotics as well as help with arthritis and ease the pain caused by milk engorgement in nursing mothers.
Bromelain breaks down a protein called fibrin, thereby preventing clotting and improving circulation. It also slows the buildup of hormone-like prostaglandins in the body. According to some studies, bromelain reduces swelling as much as standard anti-inflammatory agents such as ibuprofen and naproxen. People with osteoarthritis and rheumatoid arthritis reported less pain and swelling of the joints when they took bromelain, as did those with carpal tunnel syndrome. When applied to the skin, bromelain removes dead cells in a process known as debridement.
I ran out of facial cream. It's now officially time to switch to all natural products to be putting on my skin. What goes into my skin, eventually goes right into my body
Thursday 11/7/2013 was by far the worst pain day yet. Each day of pain attacks seems to keep getting worse and worse. Each is worse than the last. I literally would have preferred to have been run over by a semi b/c not even pain pills can dull this intense, outrageous, excruciating pain.
That was me driving home. I was crying so hard. I had no make-up on so it's not like you can see the tears causing my make-up to run or something but you can see in the 2nd picture the red glossy eyes.
In the morning, I mix my powdered greens with water, organic apple juice, 1 tablespoon of "cold-pressed, Hemp-Oil" & open a capsule of my "Raw Probiotics" (85 billion live cultures) - Shake it all up and drink.
With it I take a *Grape seed capsule, *Turmeric capsule, *Bromelain capsule & * Ester-c capsule.
30 minutes prior to eating dinner, I drink 1/2 of the Kambucha and the other 1/2 later in the evening.
AT bedtime, I take the *Colostrum capsule, 2 *Vitamin E, another *Turmeric capsule, another *Bromelain capsule & another *Raw Probiotic.
The organic *Cacao nibs are my snack throughout the day when I need a bite of chocolate flavoring & an energy boost.
And I use a 1/4 teaspoon of the *Organic cinnamon in my cup of hot tea.
LOTS going on here! Everything is completely organic, some from other countries and either powder, liquid or capsule form.
On a mission to re-build my gut flora. The roots to my immune system
I feel like a complete guinea pig. Today, I got a CT done with barium sulfate. I had to ingest that paste like drink twice. The taste wasn't too bad BUT the texture was nasty due to how thick it was.
When I arrived, they had me lay down, they inserted an IV & in the IV, they injected IODINE. It was the craziest feeling! You immediately feel a warm sensation. It makes you feel like your peeing your self, you can feel it hit your mouth and extremities.
The technician took some CT images and sent me on my way.
Well, 10-10-13 was the day of my 1st colonoscopy and my 2nd ever endoscopy. The procedure actually went smoothly and quickly.
They brought me back, hooked me up to a bunch of machines and within about 10 minutes, I was under.
Dr. Burnette did the procedure and next thing I knew, I was waking up :)
He performed multiple biopsies between the esophagus, colon and small intestines.
Lets hope this gives us the answers as to WHY my CA-19-9 tumor marker came back high and WHY my lipase levels are sky high :)
Getting ready to go back!! I'M SCARED!
I'm all changed and waiting for the nurse to insert the IV
My Room :)
stuff to get me prepped
WAKING UP!!!! I was SO loopy!! Gotta love when the person picking you up snaps this photo memory :)
After continually having high Lipase levels, High CA-19-9 markers & very bad stomach pains, I have now been scheduled for my 1st colonoscopy and my 2nd endoscopy.
That is the worst, most disgusting 16ounces of liquid I have EVER had to ingest. Only being allowed to eat green jello was really not too bad at all. It was the Sodium Sulfate, Potassium sulfate and Magnesium sulfate cocktail called Suprep bowel prep that made me want to vomit. Ingesting that concoction is definitely something you can ONLY do if you are going to be home during the times you have to take it!
Today I began taking Greens. Powdered drink mix is the best combination of nutrients from the land and sea, immune supporting barley and wheat grasses grown in the pristine highlands of Japan are blended with protein-rich, readily-absorbable, Chlorella and Kelp to support cardiovascular health. (Barley & wheat grass, FOS, brown rice, chlorella and kelp.
My general Manager keeps telling me that this is one of the best ways to re-build my immune system and kick these auto-immune diseases. So, finally, I got myself to Vitamin World and purchased them.
The manager on duty was extremely knowledgeable and helped pick out the right products.
I also began taking Colostrum and Tumeric. We'll see what happens :)
Btw, I spilled the greens and Chloe' LOVED them!!!!
I was out running errands today and guess who Facetimed me? BABYGIRL!!! When I answered her call, her smile was like that of Christmas day. It melted my heart. I am so sick but when I hear from her or see her, the weight of these auto-immune diseases just disappear.
When I count my blessings, this child is the 1st on my list. A true little angel :)
I miss this child more than anything in this world. Although I don't get the opportunity to be in her life on a daily basis any longer, I still get to talk to her. I am so lucky to have been able to meet her, love her as my own and spend a year of my life helping her grow :)
Its hard to hang up with her.... I don't get to come home to her any more or wake up to her. I don't get to deal with temper tantrums or homework... I miss all of it.
The tech took pictures of my spleen, kidneys, liver, pancreas and aorta.
This test was ordered b/c my lipase levels are @ 182.
They should only be between 20-42.
This was only discovered bc I have been so pro-active in my approach to get well.
Prior to meeting Dr. Kirsten, I went to the ER for the severe abdominal pains. They did blood work and an ultrasound of my ovaries and said it was just a tumor and sent me on my way.
About a month later, I went to the hospital for a copy of my records. When I looked, I saw that my "lipase" level was at 125 and the normal range was listed as 20-42. I immediately asked Dr. Kirsten what that meant and she was puzzled herself to see that result. She re-ordered this blood test and sure enough, it came back much higher.
The ultrasound results should be done Friday or Monday. I'm sure nothing is wrong but it's better to be safe than sorry.
For the past week, I have had the worst pain on mt heart area, the left side of my chest.
Every breath I took just killed me. Felt like someone was squeezing my heart. Like as though my heart had no where to go, or expand. Laughing, coughing, sneezing, inhale, exhale all felt like my heart was being squeezed. Laying down made it 100x's worse!!!! I started to become questionable as to what this truly was tonight when it started to radiate into my arm and wrap around to my back, accompanied by a head ache.
I didn't want to come off as a baby or complainer so I DID go to work. I said I'd go to ER after work if this continued and sure enough, it did. It just got worse. So, I stopped and got myself a mocha with an add shot & drove to the ER. Saint Rose is such an incredible facility. The staff is so incredible and so helpful. I've been to practically every ER in the Las Vegas/Henderson area and St. Rose always tops the charts. They did an EKG, blood work and x-rays. Emergency room doc said it was a clear case of "Pleurisy" which is totally caused by Lupus and other auto-immune diseases.
He explained that it last about a good 2 weeks. Definitely can feel as though you are having a blood clot blockage/stroke/heart attack and to be prepared to have these flare ups for the rest of my life b/c of the Lupus.
It's all a learning experience and I feel incredibly blessed with the staff that has taken on helping me. I've been sick for years and I FINALLY have answers.
Thank you Dr. Kirsten Rojas, your a remarkable woman and I will forever be grateful for you and your incredible staff.
This shot business is not getting any easier...AT ALL! When I am at work, I have to run off the floor to the bathroom and quickly give myself this darn shot.
Tonight, as I sat there in a rush, worrying about my tables, injecting this into my abdomen, I realized how to answer the question "What does it feel like?"
IT FEELS LIKE YOU ARE INJECTING A STREAM OF RAZOR BLADES INTO YOUR STOMACH.
No, I've never had razor blades injecting into my stomach LOL, BUT I have accidentally been cut by one.
This flare up of this lupus & sjogren's syndrome is driving me insane. My memory is completely shot and now it's affecting work. Going to work is not about the money, it's truly about keeping my hours up for the health insurance because at this stage in prognoses, I desperately need my health insurance. One prescription alone is $1123.00 per month!
No only do I have an auto-immune disease causing "brain fog" I HAVE TWO!!!!!!!!!!!!!
And I have to wonder if the fact that I have prior brain injuries, is that compounding this brain fog as well??
With that said, I see the oncologist on Monday. I hope there is something that he can do ti help correct this and allow me to continue working. :(
What Is Lupus Fog?
Lupus fog is a general name for the cognitive impairments that often appear with lupus, including concentration and memory problems, confusion, and difficulty expressing yourself. These cognitive problems are often worse during flares.
The good news: Lupus fog doesn’t usually get progressively worse, like dementia or Alzheimer's disease, says Lisa Fitzgerald, MD, a rheumatologist at the Lupus Center of Excellence at the Beth Israel Deaconess Medical Center in Boston. Instead, memory issues will probably wax and wane, just like other lupus symptoms.
The exact cause of lupus fog is hard to pin down, experts say. In some cases, lupus can damage cells in the brain, leading directly to cognitive problems. However, in most cases other factors play a role, including fatigue, stress, and depression. Lupus fog is sometimes worse in people who also have fibromyalgia. Although it's possible that side effects from drugs such as NSAIDs or steroids could worsen lupus fog, experts say that switching medicines rarely resolves the problem.
While researchers study possible causes of lupus fog, Orosz focuses on coping strategies that help people deal with it.
"When you're a person dealing with lupus fog, you don't worry that much about what's causing it," says Orosz. "What you care about is learning how to work around it."
In Sjögren’s syndrome the whole nervous system can be affected, but here we will focus primarily on the Central Nervous System (CNS), which consists of the brain and the spinal chord. There are many things that can happen in the CNS, causing such symptoms as motor or sensory hemiparesis (one-sided weakness or numbness usually occurring in the face, arm or leg), slurred or garbled speech, encephalopathy (non-specific brain illness), recurrent aseptic meningitis (inflammation of the meninges, the coating that covers the brain and spinal chord, without the presence of infection), seizures, psychological difficulties such as depression, anxiety or panic attacks, bladder dysfunctions, or extrapyramidal disorders affecting the muscle movements.
Another way the CNS can be affected is by brain fog. This is a condition that most people are familiar with, and yet there is no medical term for it and it cannot be researched by putting ‘brain fog’ into an Internet search engine. The closest term would be ‘mild cognitive dysfunction,’ but this encompasses a wide spectrum of often subtle changes.
Today I am feeling weak and that is when I call on the Lord. Tonight began my rosary novena. Whenever I reach this point, it's because God is in his process of a teaching me a lesson / working HIS will and I respond with a novena and always, ALWAYS, I receive my answers. God is good.
Give me the confidence to ask for what I think I need, the humility to wait for His Will, and the faith to accept a refusal. Let my suffering be Redemptive, let my will be one with God's and my life a sacrifice of love.
Help me, my Jesus, to carry my cross with joy, ever keeping my eyes on the Father's Will
Tonight I was asked and expected to answer someone who asked: "Why are you posting pictures of giving yourself a shot?"
"Why are you doing that Jen?"
MY question is -
Why do people get to post pictures of themselves in the delivery room giving birth.
Why do people get to post pictures of themselves 1/2 naked out at a pool drinking alcohol
Why do 16 year old girls get to post on facebook & instagram pictures of their sonograms and shout how excited they are at age 16 to be pregnant. WHAT, wrong impression being sent to other young kids in society!!!!
Why do people get to post pictures of their gruesome car accidents.
Why do teenagers get to go on spring break and post offensive photos
When I check on my ex's little girls instagram I see teens that she follows, running a page dedicated to "depression" and teaching other kids how to "cut" themselves to feel better
This list could seriously continue forever....... BUT you see, in today's society, that's all OK!
But me, I have been sick of 8 years now. 8 years. And this summer, I was left alone, bed ridden with NO help. No family. No significant other to hold me and tell me it will all be ok. I just was left there to fend for myself ... And as I laid there, I could literally feel my body attacking itself, ruining my kidneys, my pancreas, my liver. I was alone, literally feeling myself wilt away..and after all the years of love and devotion I gave the men in my life, not one was here for me. Not one.
And guess what, this is happening to people all over the United States. So, no, I'm not having a pitty party and NO I am NOT a victim! I am a VICTOR and this is another instance that the good lord is using me as a vessel to help someone else. Even if I only save one other person from this pain I am enduring, its worth sharing all my horrible experiences that I fought and pushed to overcome.... all on my own!
SO, I finally get a gasp of life sent back to me when a door to Dr. Kirsten was opened. I start posting my experiences, women are now actually messaging me asking WHAT is that? What where your symptoms? I too have been very very sick with no answers too Jen! I too keep having miscarriages and my husband and I want babies so bad! Can you help me?? Jen, can you share your experience with me so I can maybe feel better too???
And I get questioned for doing that??? I get condemned and judged for it??
I was with my first husband for 10 years total. From age 19-29 and I never once got pregnant. I also never once used protection or birth control pills.
I was with my 2nd husband for a total of 2 years. No protection or birth control with him either and no pregnancies.
Then I met Mike. We got pregnant back in September 2012. It ended up being ectopic. 2 more times following that we got pregnant. All were miscarriages.
Anyone who knows me, knows that having a child is my greatest wish in the world. It's the last accomplishment I want to experience and a life long one it will be.
For the last 8 years, I've been having flare ups of the same symptoms, every summer. After 8 years and this past summer leaving me bed ridden, I finally have answers.
Answers I was not expecting. Neither was my doctor.
During this past surgery, she found that my right Fallopian tube was damaged beyond repair. This is the tube that the cyst grew to a grapefruit size when I was 19 years old. The doctor back then said that my tube was black and blue from not receiving oxygen that entire time the huge cyst was growing & pulling on it. He left the tube to see if it would indeed be ok. ( we clearly see it wasn't)
This is the same tube that Mike and I had the ectopic pregnancy in ( I was 32). The doctor that did the surgery said that everything with the tube was fine and in no time I'd be pregnant again. Well, she was right about being pregnant. In fact it was 2 more times BUT I suffered miscarriages both times.
I have switched to a new and incredible doctor. 2 weeks ago she performed surgery and I have found out out that the Left Fallopian tube is all I have left to try for a baby. Unfortunately, I have a disease that is causing adhesion's to grow and multiply at a rapid rate in my last Fallopian tube..
Dr. Kirsten explained that I am extremely high risk for ectopic pregnancies to continue and if I make it past the Fallopian tube. I am then at a high risk of miscarriage from the auto-immune diseases. Basically, If I were to have a child, it literally will be a miracle.
It's going to be 6 weeks before I could even try to get pregnant, which leaves me at November 13th for my next fertile cycle. Then, we wait it out, if it doesn't take, I try again December 11th - 15th and if that doesn't work, then I just keep trying.
Dr. Kirsten explained that My body has never produced enough of what it takes to have a healthy baby. So she has pumped me full of meds that will give my body what a healthy baby requires. She also explained that me getting pregnant is going to be a super close watch. She is going to be doing hormones levels twice a week. She is going to have to do ultrasounds twice a week. Possibly put me on bed rest the 1st month and so on.
My road block........ Im alone. I have no significant other. I have no one that I am even slightly interested in that could imagine asking to be the other 1/2 of my childs DNA. There is one man that I love and admire in many ways. I had to ask b/c otherwise I am on to sperm donors or adoption because this last tube has to be removed anyhow.
Its hard to imagine the following things. And don't think I am being stuck up by saying this BUT how is it possible that a woman of my age, with my looks (which I swear have been nothing but a curse) and my accomplishments, how have I not found a man to love me and want to grow old with me...The way my mom found my dad. The way my grandparents found each other. The way all my aunts and uncles found each other. So many people who don't want babies have them. Pretty much all of my friends are married. Whats wrong with me?
Why do I have to be left so overwhelmed in love with someone. Someone who laughed & joked with me, loved me, asked me to marry him, twice. Wanted to make a baby with me. Said he couldn't wait to have a baby with someone he loves the way he loved me. And now, now, he can come here and kiss me like he loves me, take care of me, call me to check on me, text me seeing if I am ok. Asking to take me to lunch BUT now tell me that he doesn't want kids anymore. Still loves me and cares about me but cant be with me. Makes no sense at all....
My Chloe' bell is super sick. I adopted her 2 months after adopting Apollo. They are basically the same age (12).
Back in May I lost Apollo to a very aggressive cancer.
About 2 days after my surgery, Chloe' started throwing up really bad. Then it turned into this wheezing. She'll be laying in bed with no exertion BUT she is in a heavy pant, she has a fever and she cant get comfortable.
If she walks, she wheezes super bad and coughs until she chokes.
I took her to the vet yesterday. He said she still had a fever and we ran blood work. He also started her on a strong dose of antibiotics.
Its truly painful to watch your little furry children in pain and not be able to do anything to make them better. She wont stop throwing up. She isn't eating and she cant get enough water. I feel so bad and all I want to be able to do is make her comfortable. 12 years of my life has been spent with this little companion......
Vet said he'd call within 24 hours with results. That time period has passed and no call yet.... No we just sit and wait.
YAY!!!!! Update - 8pm, Vet called. We have a "sort of" answer. Chloe has a high level systematic infection. Which indicates that there is an infection running through her blood. At her age, we aren't too sure how she is going to respond to the meds and if she will pull through. She is still wagging her tail though.
10 days we return and re-do the blood work. See where we stand.
CHLOE' is trying to hide from the vet in the pics below :( poor baby!!!!!!!!!!
Personally, I have zero regrets in my life.
I truly am grateful for all the bad and the good that the good lord has given me. The bad educated me & made me strong and the good reminded me of how beautiful life is and always reminded me to keep going.
At age 34 I only have one regret. Losing Paeton Aleece.
When I 1st met Mike I was very hesitant because he told me he had a child. I was dead set against dating someone with a child. But the more I got to know him, the more I fell in love with him and him having a child started to not bother me any longer....
THEN I met Paeton. I'll never forget the 1st time I saw her. This child is so remarkable and so beautiful. I never believed that I could love someone else's child as if she were my own. I fell in love with her so quickly. I truly love her as if she were my own and not having her in my life anymore just crushes my spirit. She made me smile. She made me laugh. Was always teaching me new things. Always so sweet and giving. And the best part was hugging this kid. Her hugs were always filled with love. And when daddy would reprimand her, I would be the one to go talk to her and try and hug her cute ass while she was hiding under her bed LOL .. Cant forget the times she'd fall asleep in bed in between mike and I. So cute to wake up with her arm around me....
I could have a horrible day BUT then see her get off the bus with that smile and it would erase all my problems.
As for Mike. Mike knew how to handle me, take care of me and spoil me. Which of course I did the same in return for him. We laughed, we joked, we cried, we got pregnant and excited, he asked me to marry him.
His friends called him "Head case." LOL. He was such a passionate person about things that he'd flip LOL. I was the one to bring him down a few levels and calm his ass. AND if I were the one stressed out, all I had to do was look at him and just the sight of him calmed ALL my worries. We complemented each other pretty good.
To begin, I have to say that today I truly am forever grateful to my mother for making the decision to not only give me life BUT to also keep me and raise me the way she did. I realize that women have choices. Abortion, adoption and so on. Not saying that my mother was thinking any other way but to keep me. BUT I am just incredibly grateful that she gave me life and that she gave me an outstanding childhood. I also thank my father for sticking around and working his rear-end of to give me a wonderful life. My parents were sprung into adults overnight and together, as a team, they never looked back. A very selfless move and I will always be grateful. My parents are my world and my best friends.
As for me today, well this is a very hard day. I'm single and no children. I have been blessed to have accomplished so much in my life. I have been blessed to have repeatedly knocked down hurdles and become a victor rather than a victim numerous times. And for this, I thank God.
But my birthday is a time of reflection and I am left wondering "why" what seems to be the simplest goal is the most arduous of all. I want a child and a significant other to grow old with. Why is that proving to be completely impossible?
Trust me, being single the past 7 months has been truly a remarkable experience. I've learned and blossomed so much.
In a recent experience with a guy who reached out to me, asking to date me, I stood my ground and saved myself from complete bullshit ALL because of what God taught me through my tumultuous marriage to Rick.
SO, trust me, I have learned my lessons and stood my ground.
So, when is it "my time?" If I was 20 something, I wouldn't be asking BUT I'm 34. I'm not a young vibrant 20 something any longer. I'm a 34 year old grown & experienced woman who feels the ticking of the clock.
On a lighter note, I want to say thank you to my most incredible roommate for being here and in my life. Jeremy has been a complete blessing. When I got home from work last night, I had a card, roses, candles and my fav. candy. LOL... For the 1st time I was feeling alone and defeated but he reminded me to just take it easy.
