Saying Goodbye to Acupuncture for Now

I don’t want t o give it up acupuncture. I do notice a slight difference and enjoy the attention. But since every Saturday I was having to get up a little earlier than I would naturally and since every week it was costing me $20 and I am currently more broke than ever, I simply can’t afford to keep going. I was noticing the biggest difference in my left wrist. And although I think it’s probably worth the money and time, I’m just so concerned with money right now that I can’t rationalize doing something that’s only making a slight difference. Maybe I’ll go back in the future but so far, unless money is no object, the benefits are not extraordinary enough. Supplements are so costly and I spend a TON on them. So that’s where I’m at. I do feel sad about it because I know it was helping a little. It was definitely improving my life, but I would only recommend acupuncture to people with RA who are near remission. Otherwise, it will probably just make your symptoms worse. I always flared during the visit. But the after effect of less inflammation was worth the flare. In the past however, when I wasn’t on alternative meds and tried acupuncture, I had a terrible flare that lasted weeks. It was awful! So again, I would only recommend acupuncture to those who are doing well with their disease and trying to ease smaller symptoms but not to people who are in the middle of a healing crisis, or worse, still looking for the right cocktail altogether.

My first journal entry on Daily Strength: Aug 8, 2007

To those of you who wake up every morning in pain, or sit for a few minutes and have trouble getting up……or feel weak, tired…. depressed…….. or have people who don’t really understand……… to those of you who keep trying everything you can to get rid of your flare, hoping to just get back to your normal self……….. and to those of you who are saddened that you can’t do the things you use to do……..like pick up a child, or open up that bottle of water, or take off your bra. Yes, there are days I can, but plenty of days that I can’t. And to those of you that read online things like, “arthritis is possibly caused by poor diets, lack of exercise, unhealthy lifestyle…etc.” and get frustrated because you exercise everyday, eat healthfully and always have, etc…………………

I can relate………and, I want to hear from you!!!

I’m certainly not going to loose hope that I can’t get back a semi normal lifestyle. Plus, with medical advancements, you just never know.

But for now, I continue on my journey wanting to hear from all of you……..in our quest to improve the life we have and to share with each-other R.A. which I truly believe no one understands until you have it.

For instance, I love to exercise and I always have. When I exercise I do feel better. But during a time when I’m not having a flare……..I still can’t do….say… yoga. There are just simply things I can not do. I can’t bend my wrists like I use to……and I’ve lost a lot of strength. When I’m not in a full blown flare, I excersize as much as possible while I can. When I am going through a flare (which I am now) and just so you know, I’ve been on prednisone for 8 months………and now I’m on methotrexate for the first time as well as still on the pred. I’m having of course nausea and hair loss. It sucks and I’m not sure I really want to be on this medicine. At first I thought I did, but I just don’t know anymore…….even though I don’t have any better ideas. But anyway, exercise baffles me. Because now that I’m flaring again hard core, I’m still going to the gym. When I get there it takes all of my effort to get myself moving. But once I start moving, it gets a bit better……and continues to improve slightly (never like it use to) but enough that I’m feeling more confident and happy. The moment I stop…..like literally take a step off the elliptical, I feel as though I’m right back to normal again, meaning pain and stiffness, and it takes all of me to get myself out of the gym and back in the car. Sometimes I have to pull on my legs to get them up on the elliptical.

How many of you have tripped on your way into the shower because it’s too hard to lift your legs? Or how about…..how many of you have worried about your driving skills now that it’s difficult to turn your head and the steering wheel? Any of this sound familiar?

On my last day to drink for a long time which was Sat when I went to this amazing wedding. I drank too much of course, champagne, etc. I exercised that day already so I could feel better in the evening. I took prednisone and plenty of pain killers. I know, I know, terrible on my liver. I didn’t start Methotrexate until last night which was on Doctor’s advice………he knew I’d be bingeing on sat. Anyway, my point: So there I was at the wedding, tipsy, dancing, and having a great time…..the most limber and energetic I had been in a while. And a woman I know who is a friend of mine and knows of my R.A………we were walking partners and with my last flare I had to stop the early mornings… Anyway she said, mockingly, “Your rheumatoid isn’t bothering you now is it?” and it felt so……….you know, like you must be faking this sort of thing.

O.k. now you heard me vent. Ahhhh, this is what a journal is all about.

When your disease gets you down

Pain can bring out depression

Pain and Depression can go hand in hand

When it comes to chronic disease, we all have setbacks. Since last Wednesday I’ve been experiencing a flare. It’s honestly the first that I’ve had in a very long time that was quite this bad. It could be due to stress or medications or both. Compared to how I used to feel before alternative medications, this flare is a breeze. I can still lift my shoulders, tie my shoes and walk without wincing. Flares can vary so you never know what you’re going to get. For me, having Rheumatoid Arthritis can sometimes feel less of a joint disease and more of a systemic disease. For those of you that don’t know, RA can affect the organs just as much as the joints and it can mimic other diseases like Lupus.  I can see what’s happening to my joints….my fingers get more swollen than usual, but when it comes to my organs I can only guess what’s happening.

These last few days I’ve been getting up in the morning and feeling like I’ve smoked a pack of cigarettes. I don’t even know what that would feel like but I’m guessing this feeling is similar. There’s a sense of congestion and heaviness, accompanied with some discomfort to breathing especially if I bend over and especially when I first get up. Just like my joints, this feeling lessens as the day goes on. There are times that it feels like my heart is beating harder or having trouble….could it be Pericarditis? I simply don’t know. And there are moments when my sides have dull aches as if someing inside me is a bit more swollen than normal. Times like these I can only guess what’s going on. Without insurance, there is no way of knowing without going to the doctor and paying an arm and a leg.  Seeing that I can barely afford my supplements on my own, I simply can’t afford a doctor’s visit. Besides, I know the answer to the problem…..reduce the inflammation in my body and everything will be solved, including my sour mood.

If only it were that easy. I could take some Prednisone which sits in my cupboard. But after a year of trying to get off that stuff, no thanks. I’d rather not feel even more moody than I already feel which is what Prednisone would do to me.  Flares are bound to happen from time to time. I have been lucky to avoid having a flare for the past six months or so. I’m also lucky that this one isn’t all that bad. When I did have a doctor I had the same complaints: chest pain and congestion, rib pain, organ pain, and just about everything and everywhere hurt. Knowing that I have the least amount of pains now that I don’t have a doctor, it makes it all the more simpler to not worry and just keep going on with my life. A flare will eventually subside.

Extreme tiredness is another problem that accompanies most chronic diseases. It doesn’t seem to matter how many hours of sleep I get, I’m still tired. I can say however, the more I sleep, generally the less pain I wake up with. Depression is the other thing that pulls me down. People close to me try to perk me up and they say, “Don’t let yourself get depressed.” It’s hard to have that kind of self control. You go to lift something and you realize you don’t have the strength. You plan a day of activities to realize you don’t have the energy. You have aches and pains and have no way of relieving them. People want to spend time with you but you don’t want to spend time with them…..you are at a loss for words and feel like you might fall asleep in their presence. You find yourself stuttering. You spend more than your share of time in the bathroom to accomplish nothing. (Inflammation of the intestines can make you very constipated). People cook you food and you barely eat. I think faking the way I really feel takes its toll and adds to the depression. People ask on the phone, “How are you doing?” You answer, “Fine and how are you?” But the real answer would depress other people. “I feel extremely tired and sad that my weekend was taken away from me.” People don’t want to hear that so you hold it in and take one for the team, the chronically ill team that is.

What’s it like to have a chronic disease? Well, honestly it really takes it’s toll on your body and spirit,  especially when you’re going through a flare. The pain, the medications, the tiredness….none of it is easy. I can say that since I’ve been treating myself with alternative medications I feel WAY better than before, when I was on chemotherapy drugs and steroids. But even this path isn’t easy for reasons like expense, feeling alone on this particular path, and the amount of pills I have to take can be annoying and tiring.

At first I thought twice about writing an entry like this. After all, it can make people feel uncomfortable. But then I thought, why can’t I just be honest? Why spare other people and hold in these emotions?  Is this too much information? Perhaps it is but I don’t care. At least you know when you come to my blog you’ll get the truth and the real me.  Thanks to all out there, who visit.  You are my support and I appreciate you.

Update: The Master Cleanse, Is it all Hype?

watercolor painting

watercolor painting

Day 4:

You guessed it guys, I got through day four and gave up.  My Husband called me in the evening.  He had the symptoms of the beginning of a urinary tract infection.  He was also suffering from possibly the onset of a cold.  I had him immediately take some cranberry pills and one airborn.  I on the other hand, was also suffering.  I knew to expect the revisit of aches and pains.  My tongue had been coated for days with a horrible taste in my mouth that wouldn’t go away, along with a smell that was EVERYWHERE.  My terrible hunger were finally becoming more bearable.   What I feared most however was the flare that was happening, along with brand new pains I had never felt before.  My left leg was hurting in an unusual way, feeling as if it might be swollen.  I chose to wear a loose skirt that day because my pants were too uncomfortable.  I also skipped my high heels and opted for sandals because my feet and ankles hurt.  All day it hurt to sit.  Not only was my leg hurting, but my hips were killing me.  I found myself pulling my left leg up, sort of sitting on my left foot if you could imagine, just to take the pressure off of my left hip.  Of course I was tired of drinking the lemonade concoction and I wasn’t experiencing the weight loss that was described on the Internet.  I had lost 1 1/2 pounds.  Weight loss wasn’t the reason I decided to stop.  I decided to stop because I started to really think about healing and how it works.  I know I don’t know everything, but I do know that healing takes time.  Rheumatoid Arthritis is a very serious disease.  If it’s severe, which mine is, it can damage a lot of joints, including organs very quickly.  And if you think about how long it takes to heal even a sprained ankle, another 6 days of the Master Cleanse isn’t going to heal everything that I have wrong with me.  I have hypothyroidism too, which means my thyroid doesn’t produce as much hormone as it’s suppose to.  Was the Master Cleanse going to heal that too?

I was in pain and getting worse quickly.  Not only did I have unusual pains, but I also had the typical pains from a flare, including very swollen fingers.  My doubts about the Master Cleanses ability to “heal all ailments” were growing.  I also looked up how the Master Cleanses inventor, Stanley Burroughs died.  I found conflicting evidence.  Wikipedia claims he “died of a massive hemorrhage of the mesentery in the abdomen.”   Other information on the internet claims, “Stanley Burroughs passed away in Newcastle, California, on June 16, 1991, at the age of 87, after a two-week battle against acute pneumonia. His death certificate also mentions leg fractures, apparently from a fall, and a urinary infection, as contributing conditions to his death.”

I wasn’t crazy about this diet to begin with, but several people whom I know closely were encouraging me.  They too were hoping my RA would magically disappear.  On the fourth day however, I realized knowing my body and what flares are like, that if this cleanse were really healing my body, there’s just no telling how long it could take.  Not only that, flares aren’t good for you.  Inflammation is bad.  You could, theoretically give yourself a heart attack or ruin an organ if inflammation gets too out of control.  I decided the risk wasn’t worth it, so I quit.

Since then, I’ve been exhausted, dealing with a sore throat every morning and recently, a partially swollen eyelid.  I have been suffering from an ongoing flare ever since I tried the Master Cleanse.  I just don’t believe, had I kept going that I’d be better off.  I don’t believe that it would have cured my hypothyroidism.  And I certainly don’t believe it would have cured, an even more complicated disease like Rheumatoid Arthritis.  There is just too much healing that would have needed to take place if it were even possible.

Bottom line is, I think the Master Cleanse is too drastic for people who have illnesses.  For instance, someone who suffers from Anemia, should not do a diet like this, in my opinion.  I am no doctor, but neither was Stanley.  I also think that because every person’s body is different, there’s just no telling what kind of effect, good or bad, a fast like this can have.

Choosing the Alternative Route

An Apple A Day Keeps The Doctor Away

An Apple A Day Keeps The Doctor Away

This evening I visited my on-line Rheumatoid Arthritis Support Group. I visit the group, not because I’m in pain, but because I want to share information. I used to visit daily to receive support from the wonderful people who share their heartfelt stories. Because I’ve experienced the lowest of lows with RA I feel like I can relate to my fellow online friends and offer the support they need now that I feel great. It’s tough however when I read post after post about their failing medications. I wish for all of our sakes, the choices were easier to make and that drugs given by doctors worked consistently.

I have a theory that when the body’s immune system is suppressed, the body will continue to fight and cause the immune system to boost and the drugs to stop working. The opposite of that, is that by taking alternative medications, the body is given a chance to heal and correct itself. If given enough time and the right medications, I do think this is possible.

One of my friends from the online support group who had disappeared for the past 6 months wrote to me. She had started on Low Dose Naltrexone (LDN) when I started and began antibiotics when I began Serracor-NK. She is now in complete remission. Not only is she not having RA symptoms but she has quit taking LDN and antibiotics for many months now. So what happened? Well I think her body corrected itself, and hopefully it will stay that way forever. If for some reason it goes haywire again, perhaps LDN and antibiotics will again be the ticket to a better functioning immune system. And as well, antibiotics are on the back of my mind, in case Serracor-NK ever decided to stop working. I have complete faith that LDN will continue to work simply because I know other people who have been on LDN for years. One man in particular, Larry has noticed slight changes. He has Multiple Sclerosis, and it wasn’t until his fifth year of taking LDN that he was able to snap his fingers for the first time since MS had started. Now that’s exciting! I know to some people, it’s like, big deal, but when you have an autoimmune disease, it’s little things, liking being able to sleep through the night, make a fist, walk down or up a flight of stairs without issues that can put a very big smile on your face. At this point, I can’t tell what LDN does, I just know my pleurisy has never come back, nor has my chronic sore throat or blurry vision. I am hoping that just like Larry, LDN will continue to heal my body over time.

Before I even began alternative medications, I thought about it from day one. I already had a distrust towards doctors and the medical system for many many reasons throughout my life. Don’t get me wrong, I still go to the doctor, or at least I did when I had insurance. I believe as well, you can to a certain extent, help the medical system help you and not just go through life with blinders on. I have fought at times for certain medications or doses, and even for specialists. Getting your doctors to work for you, rather than you working for them is difficult and exhausting but in the end, it can be worth it.

I noticed early on that people on the support group who had RA generally didn’t have their perfect “cocktail” or drug mix that took away their symptoms. If they did, it seemed to be temporary. It was just a matter of time before their liver enzymes were up or the drugs stopped working. Tonight for instance, there was a post about methotrexate and prednisone not doing the job it was suppose to. The methotrexate dose was raised and yet she still wasn’t feeling better. Not only that, the raised dose of methotrexate had caused more hair loss and flu like symptoms. Inflammation was still a problem so an additional medicine was going to have to be introduced. She was frustrated and feeling confused how having a rheumatologist was helpful. The reality is, RA can be so severe that even the extreme fatigue, hair loss, flu like symptoms and yet dealing with some inflammation, flares and brain fog is still a better condition than not being able to walk or get a simple task done. It’s just sad to me, that the doctors and pharmaceutical companies only seem to offer drugs that will eventually harm you. If your autoimmune disease doesn’t do the trick in hurting your body, then perhaps the medications will. My opinion of this is conspiracy, I hate to say it, but I do think that in a world where sick people make pharmaceutical companies money, it would make sense that keeping them sick would be the answer. I don’t think it’s a coincidence that biologics and chemotherapy drugs used for RA give you less inflammation but in the end can lead to other autoimmune diseases or even Cancer.

I remember just before I stopped taking methotrexate and started taking LDN, I had done a little survey with the support group asking about daily symptoms, how many drugs they were on, and how long they had had RA. As well, had they ever experienced remission and what was the best they had felt? What I found was, the majority of people suffered from daily symptoms of RA, side effects from the drugs they take, and hadn’t experienced remission. Not only that,many people were still trying to get their symptoms under control, adding more medicines which meant more money out of their pocket and more side effects. The majority of them knew I was going to start taking LDN. Some cheered me on. Some people worried and asked me how I could choose this when it was DMARDS and Biologics that were suppose to stop the disease from causing deformation. I would explain that prednisone, which most people were taking was causing bone loss, and that until their disease was completely under control, they were probably experiencing bone deformation. As long as the disease is active and you have inflammation, regardless of what drug you’re on, joint erosion and deformation could still be in the process.

Even I have bone deterioration and that was under the supervision of a Rheumatologist and under the right drugs, including a DMARD. I have barely any swelling now, on alternative medications, and I know as long as I do have swelling I’m probably harming my joints. But knowing that prednisone which my doctor had me on for a year, harms my joints as well as other parts of my body makes me feel like the alternative route is the best way to go. How can I complain when I’ve had the least amount of swelling since the onset of RA. I wake up pain free every day. I would love to have complete flexibility in my wrists, which I don’t but I’m hoping in time it will still happen. You’ll have to keep up on my progress to find out. Either way, I’m still genuinely happy that I made this decision because I have no side effects with the supplements I take and LDN, except for good side effects like lower cholesterol and more energy . I can drink if I want to, and I almost never have a flare. If I do have a flare, I’m not even sure if it is a flare because the swelling and pain is so minimal. Possibly the best side effect that I never expected…..I have more hair than I have had in years. :)

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