Magic Mouthwash!!

      I'm sure many people with either Crohn's or Lupus deal with mouth sores. I had them so bad with my first Crohn's flare they were in my mouth and going all down my throat. I lost 12 pounds in a week cause I couldn't eat and could barely drink anything. Mouth sores are no joke. They can be painful especially if you like eating a lot of fruit and vegetables.

     I have been prescribed magic mouthwash for my mouth sores over and over but all it ever does is numb my mouth and never works to heal those painful sores. So, since I hate having a numb mouth, it usually just sits in my refrigerator until it goes bad. I became desperate for relief one day about a year ago and went to Whole Foods. There I found the real deal. This stuff is magic for mouth sores. It's called Eco-dent Ultimate Daily Rinse.

     The label says it's recommended by oral surgeons. Check it out for yourself right here. I went and bought some last week because I was under a lot of stress and I felt a bit of a flare coming on. I got 3 mouth sores and then remembered how awesome this had worked for me before. It started feeling better immediately and by the next day were almost completely healed. One thing I think works for me is following the rinse by drinking a bottle of alkaline, electrolyte enhanced water. It may just be a coincidence but that combo seemed to work really fast the first time I tried it. It's only around $10 so it's about the same you would likely pay as a co-pay for magic mouthwash from your doctor.

Mouth-sore sufferers, you have nothing to lose except mouth sores. I hope you feel better. If you try it, let me know how it works for you!

How to Fight

      This is what worked for me. It may not work for you but you're welcome to try anything you think might help. I am not a doctor and am trying to diagnose, prevent, cure or treat any disease through thus blog. Do not try to use this bog as a replacement for medical advice. If you do, that is your own risk and I won't judge you whatever you choose to do. Personally I am trying to cure my own illness and I do believe it's possible. No, for the most part, my treatment is not backed 100% by science but then nothing is in the beginning. If it were, no one would ever try to find anything to experiment with and find the cure to any illness. Actually that sounds a lot like medicine in America but I will say we have amazing diagnostics and the ability to monitor illness so if you have insurance, whether you go the natural route or not, let your doctor monitor you regularly. Please don't judge me for my choosing to go my own route. One day my experience could be your cure. You never know.

         Ok enough of the disclaimer. The first thing that helped me was moving. I now live in a drier climate and that is amazing for my joints. I realize not everyone can do this but that's what started me on the road to feeling good again. I weaned off Azathioprine and Plaquenil after moving too. I had no more health insurance anyway so it seemed a good option.

     I guess the next thing that helped was moving too. I hike or do yoga or some kind of workout every day. I'm not gonna lie, it hurt at first. I have had joint pain all my life for like as long as I can remember. I even have that weird shaped finger thing due to tendon damage that comes from the type arthritis caused by Lupus. It's cool though, my fingers and all my joints are rather flexible and it's not too bad just makes me more prone to injury so if you have the same thing, be sure to stretch and protect your joints. Wear ankle or knee braces if you need the support.

    I decided to take supplements because in doing research in the library at Wake Forest University Baptist Medical Center, I read a lot of great articles and other materials. That was a great perk of being a volunteer there.

Here are the first supplements I started taking:
DHEA- many women with Lupus are deficient in DHEA I found my symptoms greatly decreased while taking this. I started with 20mg and worked my way up to 100mg but then started having some acne problems so I switched to 7-keto DHEA and that's what I use now with occasional 20-50mg of regular DHEA if I feel symptoms.

CoEnzyme Q10- This helps a great deal with symptoms and gives me energy. It also helps to protect the heart. I take 100-200mg/day. The link goes to the brand I use. I love Swanson Vitamins as they are good quality but still affordable.

Chromium Picolinate- I tend to have some blood sugar problems, I think it has something to do with my hormones or if Lupus is caused by yeast as some say perhaps this is the reason or maybe it actually has to do with Crohn's and the excess sugar that stays in the intestines of people with Crohn's. Whatever the reason, I take 200-400mcg/day and it helps my appetite not to get all crazy and keeps my blood sugar from dropping.

Colloidal minerals- These are important for anyone with any autoimmune illness as we all tend to have mineral deficiencies. I get energy from my mineral supplements and the hair loss that I used to get from lupus seems to be greatly reduced.

Multi-vitamins- Important for everyone so take a good one. I use Trader Joe's daily multivitamin

Cat's claw- Excellent for Lupus joint pain as it works on inflammation in the tendons and ligaments

Glucosamine and Chondroitin- I occasionally take this for joint pain, however, I found cat's claw to be
more effective for me though both work.

Olive Leaf extract- This has great anti-inflammatory properties especially for the GI tract.

Avocado Oil- Contains anti-inflammatory properties and is a great source of essential fatty acids. Especially important if you have neurological system Lupus or MS or TM. Get lots of EFAs!!

Other things that work for some are vitamin E, B vitamins and vitamin D. I felt I get enough of the E and B complex but Vitamin D just makes me feel strange so it just sits in the cabinet.

Got nausea? Try this!!

My favorite anti-nausea, stomach soothing juice recipe:

2 apples, any variety, sliced
1 chunk of fresh ginger root about the size of the top digit of your thumb
1 lemon or lime peeled

Put all ingredients through the juicer and enjoy. You can adjust the amount of ginger or lemon juice. If you have mouth sores, you may need to leave out the lemon and just use tart apples like granny smith. I also like to drink this juice when I have a cold or sore throat. It's very soothing to tired vocal chords as well.

Eat well

     I spent a lot of time being sick. I didn't know what to do besides what the doctors told me which was basically just to take my medicine and that I have these illnesses so I can't really expect to feel 100%. One thing I did begin to notice was that certain foods caused flares. One thing was for sure acne was becoming a brand new problem and joint pain, which was not a new thing, was making life nearly impossible. One rainy day I found myself trapped in the top bunk of my dorm because my joints were so swollen and tender I couldn't move. I realized the acne was caused by dairy, cutting that out also helped my Crohn's pain as well. In my house we didn't really consume dairy but while away at college, I did eat it so perhaps that explains why I got so sick. I also realized, though it took quite some time, that wheat was causing my joint pain. I decided to do a liver cleanse right before the severe Lupus flare which is why it took so long for me to go to the doctor. I thought what I was having was a "healing crisis." Anyway, I realized upon eating wheat again that it is a definite trigger for joint pain. In recent times, however, I have found that not all wheat is bad. I can tolerate Ezekiel sprouted grain products. Also I notice when I do eat something with wheat flour, my skin will break out again. I have some theories on why that is. I'll go into that in another post.

      Another thing I avoid is meat. The animal fat is very inflammatory except maybe salmon or tuna. I avoid fish, however, because I don't like eating animals and there is so much pollution in the ocean now I think there would be a lot more problems with eating the toxins that would be bad in the long run. I did however, get myself out of a Crohn's flare which was causing me to lose hair due to an inability to absorb protein. I just felt guilty after eating it for a while. It did help me at one time though so I can't leave that out but eat at your own risk. I actually was helped a lot by the book, Eating Right For A Bad Gut. My insurance company case worker sent it to me and you can buy it from Amazon rather inexpensively.

   With Lupus, it's good to avoid meat, especially if you have had kidney involvement. Breaking down meat is hard on the kidneys and if they don't have to work as hard, they can work better. Creatinine is a bi-product of digesting meat. They check for elevated creatinine levels when checking your kidney function if you have lupus, if you're not eating meat, then you tax your kidneys less and your creatinine levels can stay low. It's just my own theory so you can take it up with your doctor or nutritionist. I recommend a nutritionist as a doctor is not usually required to take any classes in nutrition so they are often clueless about diet. My first gastroenterologist told me I had to eat only white flour and white rice and that I had to cook all my vegetables to mush, nothing raw. That made me feel worse.

   Now for all the foods you want to eat:
1. Fat- not all fats but some are really good for you.
     -avocados
     -flax oil and flax seeds however, don't eat seeds if you are in a current Crohn's flare
     -coconut oil and anything coconut it's anti-inflammatory and builds your blood.
     -olive oil is excellent for cooking it also has antibacterial and anti-inflammatory properties. I also use it on my skin sometimes.

2. Fresh, raw fruits and veggies eat as many as you can more veggies than fruits, too much sugar is bad, especially if you have Crohn's. Peel your apples if you have a Crohn's flare and eat at least an apple a day during a flare. It's great for nausea. If your flare is really severe, try juicing your fruits and veggies and give the GI tract a break start with this recipe. Avoid beets though, they can cause flares. Also, while technically it's a grain, do avoid corn while flaring and when you do eat corn, or any other fruit or vegetable, it should be organic.

3. Beans- Especially chickpeas, white beans, kidney beans, edamame, etc. Eat organic and make sure there is no sugar or lard or anything else added if you're buying canned. Beans are a great source of protein and a good, safe fiber for Crohn's sufferers. I found that fiber from beans and apples and oatmeal actually helped quell the nausea I had constantly from Crohn's.
My favorite chickpea snack is hummus. I love to eat Trader Joe's mediterranean hummus with veggies. If you don't have a TJ's nearby, try this amazing recipe: Copycat Trader Joe's Mediterranean Hummus. Sometimes I even thin the hummus out and use it as salad dressing.

4. Grains- Oats (not instant or quick-cooking), brown rice or wild rice, sprouted wheat, barley, spelt, etc. Avoid all processed grains, especially wheat. Try my favorite Ezekiel sprouted grain products. It's the only wheat I can tolerate without skin breakouts and hives and joint pain.

5. Raw cacao- It's a superfood always makes my cramps or headaches go away. It's great with nuts and raisins or I like to make this warm cacao drink. You don't have to make your own almond milk I jut buy it from Trader Joe's. Sorry, I live really close to the TJ's and I am there nearly every day so I can't help but  talk about them, I swear I'm not trying to make you guys jealous. Whole Foods is a great option too if you don't have TJ's Plus you can get a lot of soy, coconut or almond milks at regular grocery stores.

6. Yogurt, Kefir, Sour Kraut, Kimchi, other fermented foods- These are important for everyone but especially if you have Crohn's there is a lot of research out there that says that probiotics are helpful in controlling Crohn's symptoms and all of the above foods have them. You'll want to get non-dairy sources of yogurt and kefir as dairy and all of it's hormones and antibiotics and added sugar will negate any good bacteria.


That's it for now. In a later post I'll share what supplements have helped change my life.

The Zombie Days.

     Ok this is my story. I was always a bit sickly growing up. I remember I missed like 80 days of school one year in elementary school. I have no idea how I wasn't held back. I always had bronchitis, strep throat or the flu. Sometimes I just felt sick but nothing diagnosable, chest pain, joint pain, general fatigue- stuff that couldn't get me out of school. 

This is me now. I don't have a lot of the sick pics.

     It wasn't until college that I finally became very sick but then it was GI problems. I had been in and out of doctor's offices with all kinds of issues and test after test was negative until one day I had been running a fever this mild pain that I had had in my lower abdomen near my groin and occasionally up under my left rib had spread and become unbearable. I had these hot flashes that would accompany waves of excruciating pain on top of that I had sores in my mouth and all down my throat. I couldn't eat anything. I had been tested for h. pylori on suspicion of ulcers, it was negative I thought perhaps the sores had been a result of having been intubated for an ankle surgery as they started right after that procedure. Finally, when I lost 12 pounds in a week, my doctor's office P.A. became very concerned and sent me for an abdominal CT scan. The next day, they were calling me to go in to a gastroenterologist's office right away for my results. At that point I didn't know that it usually takes 3 months to get the next available appointment in a gastroenterologist's office. I honestly thought I was just going crazy and that everything was in my head since test after test had shown nothing. The doctor brought me into his office, not  an exam room but his actual office, which was weird to me because I had only seen people speaking with doctors in offices like that on TV when they were getting really bad news. He then told me I most likely have Crohn's and that it's incurable. The diagnosis was confirmed with small bowel follow through x-ray and colonoscopy where he discovered that 12 inches of my terminal ilium (the last part of my small intestine) were ulcerated. 

     The doctor started me on Pentasa but I couldn't tolerate it. It may have helped a bit but when you feel awful and are nauseated and in pain, taking 16 horse pills a day doesn't really make you feel well. I then tried a string of other drugs including Budesonide, which made my hands and face swell, Cipro (and several other antibiotics), which made my tendons in my ankles pop constantly, Azathioprine, a chemotherapy drug, and finally Prednisone once I landed in the hospital with a severe flare. The one thing I used that did help with some of the really severe pain was Nulev, which isn't really a Crohn's medicine but it help calm contractions of the GI tract. I still felt miserable and ended up in the hospital several times during the semester so I ended up having to drop all my classes. I then focused all summer on getting better and I enrolled in a clinical trial of a new kind of drug, a biologic called Natalizumab. It actually did help but turned me into a germophobe because it weakened my immune system so much I was catching everything. The next year I went back to school feeling better. That basically means that I no longer had to curl into the fetal position every time I ate but I was exhausted, especially after my infusions and I went around feeling like a zombie even though my blood work was somewhat back to normal and everything was looking better. 

    All good things must come to an end. The following February they ended the trial. I guess Natalizumab was linked to PML (progressive multifocal leukoencephalopathy), which is a very bad disease caused by a virus which most of the population carries but only becomes dangerous when the immune system becomes so weakened that the virus can become opportunistic and attacks the brain. Oh well I didn't feel that great anyway so I then went on an already approved biologic drug called Remicade/Inflixumab. It worked a little less well but no big deal. 

     Another bump in the road came when I was going to be aging out of my parents insurance. No one was going to give me insurance with a pre-existing condition. I tried but the lowest-priced policy I could find was $750/month and they wouldn't cover pre-existing conditions until after a year had passed so that was useless. I decided to wean myself off of the Remicade as that would cost $5000/month without insurance. I certainly couldn't afford that. Meanwhile I began to run a fever with no other symptoms except headache, muscle aches and fatigue.

    Thank the Lord I still had insurance at this point. On top of the fever which was low-grade and had continued for 6 weeks before I finally went to the doctor's office, I started to have a sore throat. The PA I saw there was a total witch with a capital B. The quick strep screen had come back negative and I had a temp of only 99 since I had taken some Tylenol so she said "Why are you here? You basically came in because of a headache?" I had been feeling so miserable that day and in that moment, I just felt humiliated. "I guess so," I responded. She figured I might have Rocky Mountain Spotted Fever(RMSF) and started treatment since if I did have it, it would kill me before the results of the blood test ever came back. I took the full course of antibiotics which should have stopped it but I was still sick and still running a fever. I was referred to an infectious disease specialist who began to test me for everything under the sun. I then developed a rash all over my arms, legs and trunk so they sent me to dermatology where they did a skin biopsy. They thought perhaps it was Sweet's syndrome which is basically extra-intestinal Crohn's disease. By then my throat was swollen even more and I was so miserable they decided to do a throat culture too. That evening my fever spiked to 106 and I ended up having to be admitted to the hospital. 

     In the hospital they ran more tests and found that my white blood cell (WBC) count was very low, liver enzymes were elevated, I had developed a heart murmur with some inflammation around my heart, and my throat culture, when it came back, showed I had a strep b infection and my test for RMSF had even come back positive. I had five teams of doctors working on my case with no idea what was going on. My WBC count was so low they were thinking Leukemia then further studies showed that wasn't the case. Finally the team from internal medicine, upon running more blood tests, figured out it must be Lupus and started me on Prednisone just in time. That was a scary time for me I never felt more miserable in my life and I was sure I was going to die if they didn't figure out what was wrong with me in time. I did survive but had a rocky road trying to get better from Lupus. I had to get bounced back and forth between GI and Rheumatology because some symptoms of Crohn's and Lupus overlap. It was extremely frustrating because no one had any answers and the meds the GI doctor had used would no longer be safe to use since I had Lupus but there are so few treatments for Lupus and I was unwilling to be on Prednisone long term as it is a miserable drug and made my face and tummy really fat so that was actually the start of my realizing how little I needed the doctors in my life. I would like to have doctors to monitor me but that's not a possibility so I have to take care of myself. There will be more on that in my next post.

Welcome/Introduction/Disclaimer

     So this is my first blog ever! Thanks for reading and welcome to my blog! I hope you enjoy and get lots of useful information. I have Crohn's disease and Lupus along with acne, hemorragic cysts, food allergies and I believe possibly some insulin resistance. However, I have found a way to thrive in spite of all the health difficulties. I am healthy, energetic and happier than I ever have been and I don't have to take medicine. Don't get me wrong, an occasional Midol is absolutely necessary as well as Dayquil to get through a tough workday while fighting off cold or flu. Even an antibiotic or antiviral here or there can be necessary and as much as I hate it, Prednisone has saved my life. I try to be all-natural as much as possible but you know, sometimes there are desperate times.

     I had been planning to write a book to help other people be able to thrive even with chronic illnesses but I figured I can be just as effective and maybe help more people by providing this information in a blog. Before you send me hate mail, I am not anti-medicine or drugs or doctors. I just think that people should use the bare minimum to be able to thrive and enjoy life. I think the goal of any sick individual is to not be sick and not be on medicines. I believe that you should be able to live without medicines and side effects and not have to be dependent on a pill for your survival. I am not interested in arguing with people about my choices. I am just telling you what works and doesn't work for me and passing along my wealth of information from all of my research, as well as discoveries made with a bit of trial and error.

   Having said all that, do not quit taking your medicines or stop following doctors orders. This is only a blog it is not intended to prevent, diagnose or treat any medical condition. If you wish to follow any of my health advice, please seek the guidance of a qualified medical professional before adjusting medicines, changing your diet, adding supplements or starting any new exercise program. Everyone is different and what works for me may not be healthy for you so most importantly, be healthy, stay positive, get plenty of sleep, drink water and eat healthy.

I wish you great health and much success in your journey to wellness!