In My Absense

I have a friend who asked that I just write something every now and then.  In fact, he requested that it be a little more personal because the other articles make his head spin.  I explained to him that my most popular post was “Polypodium Leucotomos” for a while, so you see, not everyone wants to hear something personal.  After-all, I’m not Rheumatoid Arthritis Guy.. :)

There is so much I could talk about, but where to begin?  First, it’s been a busy Holiday season for me.  Though I work part-time, I have a plethora of to-do’s and so much is changing in my life.  I’m in the process of moving.  Of course, I don’t know where I’m moving to.  My husband got a job in another town where I will commute a 3-hour drive to see him.  It was very last minute, but absolutely welcomed with this economy.  Because our apartment was too expensive for just one person to live, I was forced to move out and I am currently staying with a friend while looking for a different living arrangement.  My husband found a nice town house, much nicer than expected because the town he’s now living in is very affordable.  It’s definitely an upgrade compared to the smaller spaces I’m accustomed to in L.A.  So at least on the weekends, if I survive the monotony of the drive through the grape-vine, I will stay in our nice place.  Of course there are drawbacks to living in a small town, or at least for me there are.  I grew up in a very small town until I was 18 and then I moved to yet another small town, near where my husband will be until I was in my late 20’s.  I haven’t experienced much and I certainly haven’t traveled, so I just can’t go back to the simple life at this time.  I’d rather deal with the traffic and people, where communities are a mixture of all races and beliefs and I can have a late night dinner if I want to.  A city has 24 hour access and boundless options.  This small town however, is literally asleep in the early evening, businesses close down and there isn’t a car on the road past 10.  Even on New Year’s, I felt like we were the only car traveling down extra wide roads that probably see more trucks than economy sized vehicles.  To some it is heaven, but for me, for right now, it’s just not what I want.

For a week, my husband had been visiting this small town, looking for places to live and running errands related to his new teaching job, all the while I’ve been frantically trying to get all of my stuff done.  Though we’ve successfully moved out and he’s successfully moved in, all of that wasn’t even on my first priority list.  One of the things that I accomplished in January was starting and finishing a painting.  It is not, (ahem), hate to say it, one of my best pieces.  I struggled on this one and I don’t know why.  I even started over at one point in time.  I’m sure to many people, it’s a great painting, but I wanted it to be one of my best.  It’s of a dog, a very cute dog, but aren’t they all cute?  How can I mess up a dog, right?  I wouldn’t call it messing up per se, I would call it… oh I don’t know, just not my best…I guess there’s no other words that I can think of to describe it.  Luckily my customer received the painting and fell in love with it.  Even if I am my worst critic, I am glad that someone was happy. :)

I was relieved when the painting arrived safe and on time and I got word that the customer loved it.  Getting that off my hands was 1st on my list and caused me a lot of stress, but now that it was over, it was time to put all of my focus into packing.  On one of my frantic packing nights, I packed boxes past 2am.  Then I got up at 7 am to get some reserved boxes from a grocery store.  The next night I slept for one hour.  I packed all night long.  Yes, I know I have Rheumatoid Arthritis.  But my husband was going to be starting his new teaching job in less than two weeks, and I was going out of town, and he was out of town… I just had to make sure that before I left for Sacramento to visit my mom, that things were in order.  I’m not sure if you would call this overkill, controlling, or smart to make sure that most everything was packed, but that’s what I did.  I kept waiting for things to feel “mostly complete” and unfortunately, it took all night and all morning to give me that feeling.  I felt completely exhausted from all the packing and lifting.  I had bruises and tight muscles, along with extra painful joints for the next week, but what can I say, I have a knack for packing.  And so I felt extra obligated to pack things right, after all, I was the one that possessed the skills!  After my hour of sleep, my friend called me and we then drove for 6 hours to Sacramento.  Despite my fatigue, I had a great time and enjoyed the hours of resting in the car.

Sacramento was for the most part relaxing, except that my mom keeps things much cooler than I’m used to.  No matter what I did, I couldn’t seem to get warm.  One of the interesting things of having autoimmune diseases, is the constant quest to get things “right” with your own body.  It’s like you’re on a treasure hunt 24-7, only the goal is to have fleeting moments of feeling normal again.  While many people leave it up to their doctors, I leave it up to myself to figure things out.  I use intuition, I read as much as I have time for, and I experiment in the safest route that I can find.

Change for me is big right now. Not only am I moving..and I don’t know where, but I’m also going to be starting up a class to improve my animation abilities starting on the 14th.  The class will average about 12 hours of homework per week but I’m sure I’ll be doing more.  The program (Maya) is intense and I look forward to broadening my skills.  I’ll also be spending extra hours in the lab, trying to learn other programs while I have DVDs and computer technology at my fingertips.  I’m entering a scholarship and hoping that I get some help with my education, so that I can continue taking classes every ten weeks at night or on weekends.  Wish me luck on that-the essay, application and recommendation letters are due in March!  Can we say STRESS??

My RA has been doing great.  I take a lot of pills, each doing their own thing to my body and keeping me in check.  I have been taking prednisone… 2.5mg regularly.  Back when I took the turmeric placebo and got really sick, I’ve been on prednisone since.  After reading about a new time-released prednisone, that releases 4 hours after you take it, it dawned on me that I should test what prednisone would do to me in a small enough dose at night, so it won’t keep me awake.  I figured out through trial and error that 2.5mg was a good dose.  I could even go up to 3.5 without any problems, but the smaller the amount, the better.  And wow, what a difference!  If I took that dose during the daytime, I wouldn’t notice anything.  In fact, I’d have to take 10mg a day to do what 2.5mg does for me at night.  Somehow, taking it at night really makes my hands feel nearly normal again.  Although I am well aware of the damages that may be occurring from the long term prednisone use, I am utterly gleeful that I can make fairly tight fists every day.  Long term prednisone use at such a small dose probably isn’t doing too much, but it could potentially damage eyes, cause calcium loss and deterioration to my bones, even if it is only slowly over time.  Still, it’s about quality of life, not quantity.

Now that the holiday “break” is over, I’m relieved.  I had a lot of time off, yet it felt like a whirlwind of constant going and constant work.  Even my mind felt like it was going to explode from all the stress, along with not really knowing what day it was anymore.  I am glad to finally be doing a little less, and to be on a path that feels like a positive direction.  I’m glad all the packing, the driving and the unpacking is over.  I’ve had many other adventures and stories I’d love to share, of what I’ve done in my absence.  But alas, another day, another story.  I hope to keep up better with this blog this coming new year and I have other resolutions I hope to stick with as well.  I’d like to get thinner, fitter, just feel better about myself and be in a real routine of working out.  I’d like to write more, paint more, and just get more projects finished.  And I would love to get better about taking all the pills I need to take on a daily basis.  Because I feel pretty good on fewer pills, I have a tendency to take less than I should.  I know that if I took everything, I’d feel fabulous.  But it can definitely be hard to stick to a real regimen.  So hopefully this year will be a new year of wonderful change.  And I hope to share these wonderful changes with all my listeners, my friends and family, who have emotionally supported me through some of my toughest moments.  Thank you all, I am forever grateful and happy New Year!

Alternative Options for Multiple Sclerosis

Having an autoimmune disease, or in my case, a few, has increased my interest in learning about other diseases, as well as other treatments.  Of course, I think I have always had an interest in medical literature.
And since I’m on an alternative path of treatments, my interest definitely sways into the natural and homeopathic, even though I am certainly not against conventional medications.   I have no idea where this interest came from, but it has always been there, along with many other interests in my life.  And Mom, please stop telling me I should have been a doctor…I’m an artist, first and foremost!  I didn’t become interested in learning about multiple sclerosis until I had Rheumatoid Arthritis.  Before this, my uncle developed Lou Gehrig’s Disease (ALS), and later, after I developed RA, my father developed Parkinson’s.  Though my uncle is not related by blood, this still added to my growing interest of wanting to put a halt to all the disease in my life.  Perhaps if I could learn about these diseases, I could also come up with theories on how to improve the lives of those that had them?  And why did it seem like diseases were on an upswing?  My quest for answers continues, so I hope you can share in my journey to help the lives of others.

I was on Daily Strength one day when someone with both Rheumatoid Arthritis and Multiple Sclerosis wrote in on one of the posts.  They mentioned how Low Dose Naltrexone had changed their life.  At the time, I didn’t pay much attention to it and later couldn’t find the member.  But months later I had remembered Low Dose Naltrexone and started researching.

Upon research I found communities who knew a lot about Low Dose Naltrexone, and also people who knew how to be terrific supporters.  I gained friends, many who had MS and as a result became more interested in learning about Multiple Sclerosis.  I also hoped to simply learn more about neurological diseases.  My dad, new to Parkinson’s wasn’t as keen as I was in alternative medications at first, but soon I coaxed him into trying LDN.  I don’t think he thought it was doing much until months later when he ran out and realized he noticed a substantial difference.  I also have him taking higher doses of Coenzyme Q10 which has been shown to slow down the progression of both PD and ALS.

Multiple Sclerosis has been particularly interesting to me because the treatments for MS are currently inadequate.  Ask anyone with MS and you’ll hear the same thing.  That’s part of the reason why so many people with MS discovered Low Dose Naltrexone.  You can say the same for Pulmonary Fibrosis and many other diseases where people are given steroids, antibiotics, and other medications hoping to change the course of the disease and yet the disease for the most part, continues to progress without much change.  Pulmonary Fibrosis is a disease that can also be treated with Serracor-NK and Serra-RX because it reduces scar tissue.  Scar tissue can cause many health problems and diseases which is why reducing this scar tissue and fibrin which causes it, using Serrapeptase can be so helpful.

  What is MS?  Watch this video to learn more.

Recently, I’ve been thrilled to see that Serracor-NK is a recommended alternative treatment for Multiple Sclerosis.  It’s also compatible with most drugs, so another great solution if you have MS and are on CRAB drugs, antibiotics, or steroids.  Because I take Serracor-NK and know how well it works for me, I imagine that it would also work well for MS.  There are lots of theories out there that MS and RA are actualy closely related.  Whatever the case, any treatment that works for MS is a miracle.

   Watch an MS relapse to better understand this disease.

“In MS, the myelin protective sheath that covers the nerve cells is broken down by immune complexes that are embedded in it. Serracor-NK,Serrra RX80 and other proteolytic enzymes break down the destructive immune complexes and can dramatically reduce MS symptoms. While regeneration of damaged tissue is not possible, regular supplementation with enzymes has been documented to halt the progress of degeneration associated with most stages of MS.”-biomediclabs.

  Reversing MS, is it possible?  Research shows new hope!

Hopefully soon we will find real solutions for our medical issues.  Until that day comes, I hope that you will join in the research, theories and recommendations that myself and many other people provide.  I will always mention, I am no doctor and this is all solely my opinion, but I do hope that this site helps you!  Hugs and thanks, -Sarah

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.

Health before Wealth

Recently I was talking to my mom about the newest thing I’m thinking of trying. It’s suppose to balance the pH of your water, along with add electrolytes and minerals. (see link) She asked, “How can you afford to take all of these things?”

The truth is, financially I can’t really. I’m stretched as thin as a rubber band, ready to break at any moment. These are hard, economical times.

On the flipside, can I afford to NOT keep trying new therapies in hope that remission will soon be giving me a high five at my doorstep? Sure I’m feeling great in a sense that I’m completely functional with RA. But as long as I’m not in remission, there’s still damage being done. I’m thinking long term. It’s the same as keeping up on your teeth cleaning. If you don’t, you could end up with some serious tooth decay, along with heart conditions and toxins invading your body. What kind of damage is happening to my hands long term? And there’s no guarantee with conventional drugs either that you can skip out on the deformities. Just clue into a recent post and you’ll see that hand deformity is just like the disease itself in that it varies from person to person. So you have to do your best to get inflammation under control no matter what you’re taking. Even if you’re taking DMARD’s and Biologics, you have to consider that eating right and exercising would be a wise, helpful choice since these medications can raise cancer risks, among other things. Our bodies are long term investments.

From time to time expense comes up as a topic in my RA support group. The idea of going organic, buying fresh food vs packaged, and taking supplements that can improve overall health seems too expensive to some. Most people embrace the burden of the extra costs, but a few need encouragement that long term, investing in the right foods and supplements will save money. This is particularly tough when a lot of us, including myself are living paycheck to paycheck. What you pay now at the grocery mart will help determine the costs of your future medical bills. Just like I am spending money on supplements, rather than movies or haircuts, I’m figuring that the money I spend now could make for a less expensive health bill in the future. Not only that, but the better I feel and the more that I can do, the better chance I have at making more money in the future, simply because I’ll be able to keep up a career and hopefully advance in that career.

So my motto is, when you’re trying to decide what to eat for lunch and your choice is a hamburger on the doller menu or that organic salad with grilled, free range chicken that were raised without antibiotics….. choose the latter. Because in my opinion, you’re going to be paying for your health in one way or another.

The Ripple Effect

Getting older is tough enough.  Watching your body change as you get older is a gradual process.  A gray hair here, a gray hair there.  A wrinkle here, a wrinkle there.  As the days move forward, at least you know everyone else is in the same boat.

But getting older with an autoimmune disease, in my opinion, is far more difficult.  You plunge head first into a scary world, and you imagine this must be what it feels like to be 90.  Losing abilities, taking pills daily, watching your body change at a very fast rate can be not only frustrating and painful, but detrimental to your mental health.  Each day is different.  You might notice new rashes on your skin, new bumps or bruises, or another task left uncompleted because of lost ability or weakness.  I remember clumps of hair falling out in the shower.  I felt sort of like a cancer patient.  The kinds of things you go through are just not meant for daily conversations.  So you feel alone and trapped in your own skin.

Luckily however, I have been able to get my Rheumatoid Arthritis under control with alternative medications that don’t have side effects.  My hair no longer falls out in clumps.  I rarely get new bumps or rashes.  And I am able and agile enough to once again live a full and productive life.

But that’s not why I’m writing this post.  This post is about the unknown and that gripping fear that although everything seems ok at the moment, the likelihood that more problems are in your future, especially as you grow older, is likely to occur.  And don’t say that I’m living life with a glass half-empty.  I am optimistic that whatever arises, I’ll be able to handle and possibly even get control of by taking more supplements.  But my point is, is that it is likely that if you get one autoimmune disease, there may be more to follow.

My first autoimmune disease was a skin disease.  It’s located on my shins and called Necrobiosis Lipoidica.  At first I was told it was Granuloma Annulare and the doctor showed me a picture of a woman with it all over her body.  This conclusion of course, was horrifying to me because for the next five years, I worried I’d be covered with shiny, scaly scars.  Fortunately, the doctor was wrong and instead, I was diagnosed later with Necrobiosis Lipoidica, which is a skin disease that only affects the shins.  Both skin diseases usually accompany diabetes, so the doctor was confused why not only did I not have diabetes, but it did not run in my family.  Later, in my research of Rheumatoid Arthritis, I learned that Necrobiosis Lipoidica sometimes is associated with RA.  Around those same years that I developed this, I also got pleurisy, which is a painful inflammation of the lining between your lungs and your ribs.  Antibiotics seemed to clear it up and it was probably a result of living in such polluted air.  Pleurisy, however,  is a frequent symptom of Lupus and it sometimes accompanies RA.  Fast forward four years and I’m diagnosed with Hypothyroidism.  My gynecologist caught it, otherwise this would have probably gone on for years without me realizing.  Then seven years later I was diagnosed with RA.

The reality is, most people with an autoimmune disease like RA or Lupus, usually have many more autoimmune diseases.  It can be a ripple effect.  Whether it’s the diseases themselves, the lifestyles that accompany the diseases, or the medications, more and more seem to pile up.  I’m glad to be on alternative medications because I know I’m taking things that might just possibly reverse the disease process.  But there’s always that side of me, that terrified side, like a voice in the back of my head that says, “What’s next?”  This time at least, I know that I’m doing all that I can do.  I’m armed with knowledge.  I’m taking supplements that improve my health.  I’m eating better, sleeping more and consuming fewer toxins.  There’s nothing more that we can do besides enjoy every day for what it is, knowing life is uncertain, so whatever each day may bring, let it be the best that it can be.