Thursday, October 13, 2011

I Hate Biologicals! ***rant***

Hi everyone, hope you are feeling better and your joints are happy. Oh wait, joints make you happy?!? Haha, well my joints are always mad at me. I wanted to chat a bit about the biological drugs out there and the side effects that I have been experiencing. Right, now I feel like I am in the twilight zone of medicine. My RA doc doesn't know about my current yeast infection dilemma and my GYN doc, does not know squat about the use of Enbrel for RA. So as usual, we become our own advocates. Well, I am going to have to make some tough decisions concerning my meds and maybe my history with RA meds might help some of you with decisions on what medicine might be right for you.

Now, I have been on most all RA meds since 1994. Plaquinil, Methotrexate (yuk), Gold Salts ( huge mouth sores), Arava (did nothing), Remicade (Only one infusion then had to fight insurance company), Enbrel (for like 9 years now!), SImponi (just like enbrel but a once a month shot, the effects did not last the month) – and of course the love/hate of my life prednisone.  Oh how I love to take thee, but how I loathe your side effects! Anyways,I want to chat about Enbrel and my current situation and maybe someday this might help someone.

I think I am at the end of my rope with taking Enbrel. My immune system has finally hit rock bottom. I have a rare Candida infection that will not go away, and it is a quite rare strain. I have been on multiple rounds of diflucan to no avail. But every time I take my damn Enbrel, I get worse. EVERYTIME. Of course my current RA doc (as of today my past RA doc) said he highly doubts that the Enbrel would be causing or making me worse?!! Really? A medicine that lowers my immune system would not make my current infection worse? That is the dumbest thing I have heard him say since I have been seeing him. My gyn is trying to pre-load me with yeast infection medicine on the day I take Enbrel, but I just get worse a few days later. Also, more evidence that I have a crappy immune system is that I did not even have allergies this year (I have had them for my entire life and bad ones). Oh you say that  is a good thing, right?! Well, according to my ENT Doc he said its because I have no immune system to even fight off allergies so I don't feel the effects. If he is right who knows, but I am the allergy queen and it was quite shocking to not have any this season. Something was just different this year. Low estrogen (almost none), no allergies, and now non-stop rare yeast issue.

The point of all my ramblings is this. Does Enbrel help my RA – Hell yes – My joint pain and stiffness are way better on Enbrel. But does Enbrel cause other issues that are just as debilitating? Hell yes – Living with a four month long horrible yeast infection and feeling like I have the flu all the time is intolerable too. Enbrel has warnings about fungal infections. Why would my damn Dr say Enbrel is not part of the issue!!!!  Grrrr!

I think I have to reach a happy compromise. Maybe take Enbrel once a month instead of twice a week. Boost my immune system with lots of healthy veggies and fruits, probiotics, and a few supplements. And see what happens.

The only way to ease RA pain, is to screw around with your immune system. What a conundrum. Have any of you on biologicals experienced horrid side effects with them?

Sorry for the rant, but, some days you just got to rant!

Hugs and prayers!


Wednesday, October 5, 2011

Hi Everyone! RA update and Hormones *yikes*

It has been a long time since my last post (hmm…a year or so?) Life has been crazy here! Had a son graduate high school, got him off to college and also I have been having major health issues with my RA going wild and crazy mad on me! Then in June of this year I guess my estrogen level went in the negative numbers – that has been causing the worst female issues eva! I have not been able to exercise for three months due to ridiculous female issues. It is always something isn't it?!

Anyways, I hope everyone's auto-immune stuff is under control and getting better each day! I thought I would post about some stuff I have been trying to get my RA under control. I guess my immune system is in the tank since I have been on Enbrel for like 9 years.So I have had to stop injecting the stuff for a month and man did I ever pay the price. Horrible RA flare – but I developed a  yeast infection the day after I took Enbrel – this happened two times, so I know it was not coincidence. I guess when your estrogen is low, infections are a little more common – but throw that in with an immune system that does not exist do to our wonderful meds that we take, and yikes! I have to tell ya I hate menopause! So, I am back on Enbrel as of last week and what a difference – but I am only going to inject once a week instead of twice so I can try to keep my immune system from tanking. Who knows about biologicals long term effects? I mean maybe I will drop dead after using this stuff for 20 years – just not enough long term studies as far as I am concerned. But, and this is a BIG BUT, I cannot function or move my hands and knees and elbows, etc without it. So it is quality of life verses quantity I guess. What a choice!

As you all know I tried the raw, vegan diet for 6 months but there was no change with my RA. I still eat lots of raw veggies, fruits, do alot of green juice and smoothies. But I do have limited dairy and grains now and then. And my Paleo diet friend swears I need meat in my system, so I have had some chicken here and there. Meat still kind of grosses me out and stops me up too. So the jury is out on this one. (On a side note that Paleo diet thing has sure taken off hasn't it?) Anyways, I decided to look into some other things for my joint pain and stumbled on to this stuff called Blue Emu. I don't want to offend any vegans as I know this stuff contains animal oil in it (this particular product comes from emu's that have already been used for their meat so they don't kill emus just for the oil) – but I was given a jar of it to try. I know their are ethical questions related to the use of emu oil. I have questions myself. Although, most vegetarians I know own leather couches, leather shoes and purses, etc. So this complex issue exists already. It is a conundrum and I will have to research this a little more before I would purchase this ointment myself. This Blue Emu also has aloe, MSM, glucosamine and other stuff in it as well. It does not smell and is not greasy.

Blue-Emu_4oz_sm_200px I have been rubbing it into my hands (swollen joints) 2-3x a day. I feel like it has helped a little as some of my fingers are not as excruciating as they used to be. I will keep you posted on my progress. Next post will talk about RA and menopause – yuk!

Have a great week!


Wednesday, January 19, 2011

Hummus Lettuce wraps!

Hey RA peeps! Yeah I am not totally raw anymore but trying to do that 80/20 thing – ya know – 80% whole food and 20% cooked (but not crappy food).  Today for lunch I had some lettuce wraps stuffed with hummus and lots of shredded veggies like cabbage, carrots, green onions, celery and bell pepper. Okay I admit a huge piece of sourdough toast sounds better, but actually these were very good and oh so healthy. When I eat like crap I just feel like crap. Especially my stomach, which is already feeling crappy and irritated from methotrexate. I definitely notice when I eat healthy and vegan my stomach issues subside. I also get hot flashes at night when I eat crappy – does this happen to anyone else? Anyways I am trying to lay off the bread for a week! Bread is my worst enemy – I wish I hated it like I hate bananas or mushrooms.  Okay off to swallow the mtx – I am so overdue cuz I was seek for over a week with a cold! For breakfast I had a green smoothie with kale, mangos, 1/2 banana and a couple of frozen strawberries. I really like getting my greens through juice and smoothies since eating large quantities of salad all the time can get so annoying!



Tuesday, January 18, 2011

Happy New Year!

I am back! I still have RA – lol Wow it has been crazy this last year. I should have kept up with my blog posting. And then to top it off I deleted my html and custom blogger template that I coded myself but I must have lost brain cells cuz I cannot remember what I did. So I adapt, and went for a clean, simple look.

Anyways, how is everyone? RA is still grinding away at me. I quit the Raw diet thing since May 2010 but have really stayed away from meat for the most part. But lately I have really strayed from veggies, so i am hopping back on that wagon.

Just wanted to say hi!


Saturday, May 22, 2010

Hummus…where have you been my whole life?

Okay, so while everyone around me ate hummus for years, I thought I hated it! For some reason yesterday I turned the corner and discovered life! I LOVE  HUMMUS! Wow! What the heck have I been missing all this time? Maybe it took turning vegan until I would give it a shot? Who knows, but I really like it, especially the Sabra hummus (I get it at Costco).

Anyways, RA peoples, how are you? It has been awhile. I have been struggling with painful hands and wrists (enough pain to make me curse like a drunken sailor! Hey that is it! Maybe if I actually become a drunken sailor my pain will go away?! lol). I have also had tons of stiffness and neck pain, yadda, yadda, yadda – just par for the course with RA.

As most of you know I have been a Raw Vegan girl for over 5 months. Well that changed about three weeks ago. The raw diet helped in so many ways – my cholesterol dropped 30 points, I am finally going to the bathroom on a regular basis and my skin got clearer. However, the one thing that got worse and I do mean WORSE was my RA. I have no idea why. How can NO processed foods, and a diet of raw vegetables and fruit NOT help my auto immune disease? I have no answers. But 5.5 months was enough and I just started to incorporate some lean protein into my diet. Very little mind you, maybe 2-3 oz a week. So I am still eating pretty healthy but I have indulged in some occasional crap like a few cheetos, non-vegan desserts, etc. So is my RA better since I incorporated some lean protein and a little processed stuff back into my diet? YES. Let me repeat, YES. I have not taken prednisone for at least two weeks when I had practically been living on it. Now, research shows that my RA should have improved with a plant-based diet, so maybe I am just a freak of nature. I still want and plan to eat a healthy and high plant-based diet because that will keep my cholesterol low. RA people have a higher incidence of heart disease *some research states that due to inflammation, we are at higher risk for cardiac issues. So I would like to combat that with a healthy diet.

So for the unveiling of my beautiful HUMMUS WRAP – just grab a tortilla (in my case a Trader Joe's Brown Rice Tortilla cuz they are chewy and I like em!) and spread your hummus all around, dump in a ton of veggies and voila! I used spinach, carrots, green and purple cabbage, and some avo. Next time I am gonna throw in some red bell peppers.

Hope everyone has a terrific, painless weekend! Now anyone out there know of a natural way to thicken your hair? Methotrexate (oh how I loathe you) makes me lose hair, and I cannot afford to lose a single strand!


Tuesday, April 20, 2010

Amazing Strawberry smoothie!

Happy Tuesday to all my auto-immune blogger friends! Hey it is windy up here in the high desert (how shocking huh?) – I am getting ready to go for a walk but thought I would share this super yummy raw smoothie with you!

My Crazy Strawberry-Banana-Coconut Smoothie with lots of other goodies

  • 1 box of Coconut water (I use Vita)
  • 7-8 frozen strawberries (organic if you got em)
  • 1 banana
  • 3 ice cubes
  • 1/4 cashews (for extra creaminess and just because they are so good!)
  • 2 TBSP pepitas (for extra iron)
  • 1 TBSP chia seeds (optional – they are really good for you!)
  • 1 –2 tsp coconut oil (the benefits of coconut oil are amazing…for another post)
  • dash of vanilla
  • dash of sweetener (like agave, stevia, honey – add enough for your sweet tooth)
  • a little extra cold water
  • 1 Warm blanket (cuz smoothies always make me shiver when I drink them!)

Blend and enjoy!

I really like coconut water in my smoothies. I ordered a box from for auto shipment (once a month) and it cost $18 for a case of 12. That is a little expensive compared to plain old H20 but it is so worth it.  So I can use 3 cartons of coconut water a week and I am all over that!

This smoothie tastes amazing – just like dessert! It is packed with vitamin C and potassium and iron. I have been incorporating coconut oil, water and coconut butter into the diet lately. There are a lot of health benefits and I will post later about that.

I hope everyone has a great day! I am stiff as a board this morning but forcing myself to go on a walk. I have three months to get into shape for backpacking. It will be very tough this summer to backpack as my RA has never been worse. I will probably have to take prednisone to do it (and lots of duct tape!) but I will crawl on the trail before I let this crappy disease stop me. I have already had to give up some things that I just CANT do anymore. One of the things that I have had to pretty much give up is snow skiing. This is a bummer cuz me and the hubby love to ski.  But hey, I can sit in the lodge and drink hot buttered rums while the hubby skis right?

Wednesday, March 31, 2010

Go Green – Green Smoothies that is! Fight your RA with nutrition!

Hey everyone! how is the RA been treating you? Crappy? HAHA – Well how about you up your intake of veggies and fruit by making one of these bad boy green monster smoothies? I have a green smoothie or green juice almost daily for breakfast. It is easy on the digestion and loaded with super-rich nutrient foods that can help power up our bods to combat RA and the associated symptoms like fatigue, yukky skin, hair loss, etc. I am a firm believer that a healthy diet based mainly on plant-rich foods can really help with auto immune disorders. Has my RA improved on the Raw/Vegan diet? NO…but remember I had a major surgery 6 months ago which I think put me in a major flare. That in conjunction with detox symptoms from switching from a crappy Standard American Diet to a High Raw/Vegan diet has made my RA not so good.  But hey, I am not a quitter! I have improved other areas of my health dramatically by going Raw. My LDL cholesterol dropped a whopping 30 points since I started this diet, and we all know how important it is to remain heart healthy when you have RA. I am keeping thin on this diet which really helps my knees. My skin has finally cleared up and alot of my brown splotchy areas on my face (which I know was from RA) have disappeared. My nails grow like crazy and I have also cured myself of lifelong constipation. I know, I know, a yukky subject, but I lived on senekot for years. I was the queen of constipation! Not anymore. I am 100%, totally cured of that crappy ailment (no pun intended!)

Ok, so anyhoo, here is the green monster thang that I drink alot of!  Drinking smoothies and fresh juice is a great way to get tons of veggies and fruit into your diet!

My Green Monster Beast! with a Rubik's Cube in the background..I am such a nerd!

Judy's Spinach Mango Green Monster Beast

  • 2 big handfuls of Organic Spinach (I buy mine in the package at the regular grocery store)
  • 1 cup of frozen Mango (Trader Joe's)
  • 1/2 cup frozen Papaya (Trader Joe's)
  • 1 banana (I freeze mine in chunks then just toss them in my smoothie)
  • 1 TBSP Coconut butter (I LOVE THIS STUFF and it is soooo good for you)
  • 2 cups of high quality H20 - (just like waterboy)

That is it! Blend it all up for about 30-60 seconds and you have a super-nutritious green monster beast to feast on anytime of the day!

You can replace the coconut butter with almond butter, or whatever floats your boat. Sometimes I toss some raw pumpkin seeds (pepitas) in there to increase my iron intake, maybe hemp seeds for protein. You get the picture. A basic green smoothie recipe that you can tweak to your heart's desire and feel good about drinking! Be warned though, go put on a jacket as these dang things make you cold. Well, I am always FROZEN cuz of RA, so cold drinks make me cold…lol go figure.

We can take control of what goes in our bodies! That is the one area that we are totally 100% in charge of! We may have to take crappy meds and live with RA until they find a cure (*cough*) but I WILL control what goes into my body. I hope one day that my RA will turn the corner and I will be able to get off conventional meds due to my healthy diet – if not, well back to cheetos! haha

Hope everyone has a great Wednesday!


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