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!

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.

Elizabeth Gilbert: Olé!!

I got this video from “Creative Chronic Babes” and found it appropriate for just about anyone. Elizabeth Gilbert is funny, soothing and inspiring. Although you may not end up ROFL, it’s still a must see if you enjoy a great speaker and want to feel inspired. Sit back and enjoy.

Lactoferrin, A Miracle Supplement

LactoferrinI have always been on the lookout for a natural supplement that can do what an antibiotic does. But wait, Lactoferrin does so much more. The amount of information out there on Lactoferrin is unbelievable, and I’m wondering why it’s taken until now for me to even hear about it. Read on and you will discover Lactoferrin is a supplement you should consider if you want to fight viruses, cancer, autoimmune diseases, and inflammation in general. And for those who are tired of taking supplements or popping any more pills, I have the answer for you too. Bioactive Whey is a great source for Lactoferrin. Scoop it up and serve it in your favorite drink. Your immune system will thank you later….

“It’s an effective anti-oxidant, anti-fungal, anti-bacterial, anti-viral, anti-inflammatory, anti-cancer agent and immune-boosting powerhouse. The FDA felt confident enough to approve its use as a spray on beef carcasses to kill E. coli 0157:H7, a particularly virulent disease-causing bacteria.”-Raw Milk Facts

Although further research needs to be made, Lactoferrin is believed to be helpful for the lungs whether they are inflammatory conditions such as Sarcoidosis, Cystic Fibroisis, or cancerous lungs. “Lactoferrin is a protein that is found naturally in milk, tears and saliva and can stop the growth of bacteria by preventing them forming ‘biofilms’ (when bacterial cells group together on a surface, such as the lining of the lung).”-European Medicine’s Agency

Lactoferrin (LF), also known as lactotransferrin (LTF), is a globular multifunctional protein with antimicrobial activity (bacteriocide, fungicide) and is part of the innate defense, mainly at mucoses……….The combination of iron and lactoferrin in mucosal secretions modulate the ability and aggregation of pathogenic bacteria, and inhibit both bacteria and viruses by binding to host cells/viral particles. This inhibits the ability of bacteria and viruses to attach to cell membranes. It is also an antifungal agent.”-Wikipedia

If you’re taking drugs like Enbrel, Orencia, Humira, Amevive, Epogen Remicade or Herceptin, these are inhibitors of tnf-protein. The problem with these drugs is they come with a wide range of side effects, including some rare, but very serious ones which can be even more serious than the condition that you’re taking them for. “Lactoferrin released at sites of inflammation interacts with mononuclear cells (16) and suppresses the production of inflammatory cytokines such as tumor necrosis factor alpha (TNF-alpha ) and interleukin-1 (IL-1) (6).”-Clinical and Vaccine Immunology

The possibilities of Lactoferrin seem endless.

Immunity:

“Lactoferrin is found throughout the human body and occurs in all secretions that bathe mucous membranes such as saliva, tears, bronchial and nasal secretions, hepatic bile, pancreatic fluids, and is an essential factor in the immune response. Lactoferrin is concentrated in oral cavities where it will come in direct contact with pathogens (i.e. viruses, bacteria, etc.) and kills or greatly suppresses these pathogens through a variety of different mechanisms. In fact, there are specific receptors for lactoferrin found on many key immune cells, such as lymphocytes, monocytes and macrophages, and is known to be directly involved in the upregulation of natural killer (NK) cell activity. “-Life Extension

Anti-Viral:

“Lactoferrin has been found to both directly and indirectly inhibit several viruses that cause disease in humans. It directly inhibits viruses by binding to viral receptor sites, thus preventing the virus from infecting healthy cells. For example, in vitro studies have found that lactoferrin strongly binds to the V3 loop of the gp120 receptor on HIV-1 and HIV-2, resulting in inhibition of virus-cell fusion and entry of the virus into cells.10 In addition, lactoferrin indirectly kills or inhibits viruses by augmenting the systemic immune response to a viral invasion. It’s interesting to note that there is a systemic deficiency of lactoferrin in people with HIV infection.”-LifeExtension

Anti-Cancer:

“Perhaps one of the most promising uses for lactoferrin may be in its potential as a nontoxic adjuvant cancer treatment agent. Extensive in-vitro (test tube) and in-vivo research with animals has shown lactoferrin to be a powerful anti-cancer agent.”-LifeExtension

Colon and Lung Carcinomas:

“Sekine et al. have demonstrated in vivo prevention by bovine LF (bLF) of aberrant crypt foci (ACF) and colon carcinomas in rats pretreated with azoxymethane and Bezault et al. found that injection of human lactoferrin (hLF) markedly inhibited tumor growth of solid tumors derived from v-ras transformed fibroblasts and a methl-cholanthrene-induced fibrosarcoma as well as lung colonization by the B16-F10 melanoma in an expermintal metastasis mode.”-Clinical & Experimental Metastasis

Anti-microbial:

“One study looked at lactoferrin as a “natural antibiotic” and found that lactoferrin both in-vitro and in-vivo strongly inhibited the toxic bacteria helicobacter pylori. They stated “It is concluded that bovine (cows) lactoferrin has significant antimicrobial activity against helicobacter species in-vitro and in-vivo.”(16) Another study using both in-vitro and in-vivo methods added lactoferrin to the drinking water of mice and subjected them to the toxic microbe staphylococcal. The study found that the mice getting the lactoferrin as 2% of calories reduced kidney infections by 40% to 60% and reduced bacterial counts 5- to 12-fold. They concluded “the results suggest a potential for the use of lactoferrin as natural anti-bacterial proteins for preventing bacterial infections.”(17)-LifeExtension

Antioxidant: “‘Several studies suggest lactoferrin reduces oxidative stress. Diseases such as cancer, heart diseases and AIDS are all closely related to oxidative stress either as a causative factor or as a factor in progression of the disease. One study that examined the role of whey proteins, multifermented whey proteins and lactoferrin in oxidative stress made the bold statement, “We can conclude that whey protein, lactoferrin and multifermented whey are good candidates as dietary inhibitors of oxidative stress and should be considered as potential medicinal foods in various pathologies as HIV infection and cancer.'(21) “-LifeExtension

Skin:

  • Repairs and purifies the skin
  • Reduces itching
  • Increases the skin’s defence mechanism
  • Reduces red and burning skin

Healthy Gums:

“A wide range of research institutions are focusing on and conducting research into lactoferrin. Through exhaustive gene expression analysis and administration studies, Lion was able to find out that lipopolysaccharide (LPS), a pathogen produced by periodontal bacteria, not only stimulates the progress of periodontal disease but also increases the level of cholesterol and triglycerides in the blood, a condition known as “dyslipidemia,” which is one form of metabolic syndrome*. “-LION

Anemia:

“It is relevant in the battle against anemia because it appears to improve iron absorption from food and helps transport this essential mineral to wherever it’s needed.”-HF

Candida and Ecoli:

“Lactoferrin possesses two known direct anti-microbial peptides called lactoferricin B and lactoferrampin. Researchers exposed cells of Candida albicans and E. coli to lactoferrin and then watched what happened under a high power laser-scanning microscope. The lactoferrin was taken up into the cell membranes of both organisms within a few minutes, and then proceeded to disrupt the integrity of their cell membranes, which either kills them directly or enables the immune system to fight an easier battle. The researchers observed that it was the lactoferrampin peptide that disturbed Candida, whereas the lactoferricin B disrupted E. coli. This indicates that lactoferrin uses multiple strategies depending on the type of problem.”-Wellness Resources

Arthritis:

“We have recently shown that resistin is a key mediator of arthritis accumulating in the inflamed joints and exerting its pro-inflammatory properties independently of TNFalpha. Here we evaluate neutrophils as a cellular source of resistin. Human neutrophils were subjected to subcellular fractionation where the presence of resistin was assessed using western blot, ELISA, and mass spectrometry. Presence of resistin on the neutrophil surface was visualized by flow cytometry. More than 95% of the neutrophils in circulation and in synovial fluid express resistin on their surface. Stimulation of mature neutrophils with fMLF induced release of resistin into supernatants and increased expression of resistin on the surface. Resistin is mobilized simultaneously with lactoferrin, a protein found in specific granules, and with granule-stored CR3/CD11b. Subcellular fractionation of human neutrophils demonstrated the presence of resistin in azurophilic and in specific granules. Here we show that neutrophils have two pools of resistin, the major one exists in specific granules, and the second on their cell membrane. Release of resistin from the neutrophil granules probably serves the main source of resistin at the site of inflammation.”-PubMed

Crohn’s, Colitis, Irritable Bowl Syndrome and other Intestinal Issues:

Perfect for a disease like Chron’s, “Lactoferrin also inhibits gut inflammation….”-Journal Of The American College of Nutrition

“The observation that lactoferrin can inhibit local inflammation by inhibition of TNF-{alpha} mediated immune responses predicts that lactoferrin exerts a similar antiinflammatory role at local sites of immune defense where the protein is expressed (e.g., the gastrointestinal tract, lung, uterus, etc).”-Journal Of The American College of Nutrition

Kathlene Turner: From Turning Heads to Turning Her Life Upside Down

Kathleen Turner and Rheumatoid Arthritis

Kathleen Turner and Rheumatoid Arthritis

We know her as a sexual siren who inspired us by her beauty, intellect and charm from “Romancing the Stone”.  And she scared the wits out of us in “War of the Roses”.  For those not following her career, she pretty much dropped out of the lime light for a lengthy period of time. What happened?

She was diagnosed with Rheumatoid Arthritis!!

Here’s a little snip it of life for Kathleen during that time:

In my mid-40s, I reached the jolting realization – after decades of assuming I was fertile – that I couldn’t get pregnant again. We went to see infertility specialists to ask about in-vitro fertilisation, but they told me my eggs were probably no longer viable.

Next, we considered using a younger woman’s eggs and Jay’s sperm. However, we would probably have had to use a surrogate mother – and that made me feel incredibly left out. In the end, the obstacles seemed insurmountable, but that didn’t make the fact that I couldn’t have another child any less devastating. For a time, I felt as if I wasn’t a woman any more.

While all this was going on, I had also discovered I was suffering from a severe form of rheumatoid arthritis, which was a complete and total nightmare.

I’d always felt I could do almost anything that required physical strength and skill. I took pride in doing my own stunts. And suddenly all of this was stripped away and my body could respond only with excruciating pain whenever I tried to move it.

My joints swelled up so badly that I could hardly walk. Some days I was in so much agony I couldn’t even climb out of bed. Jay was very, very supportive. He must have been terribly fed up with my problems, though. The greatest shock to me was how I lost belief in my own attractiveness, my own desirability, everything.

With my loss of confidence went a loss of sexuality. That’s a strain on a marriage, a strain that is multilayered.

My condition made sex difficult because, physically, everything hurt so badly that it was so hard to feel sexy, hard for me to be a good partner, hard to be intimate. There was no position that didn’t hurt like hell.

When my pain from the illness was at its worst, I discovered that vodka killed it quite wonderfully. I didn’t want to take painkillers because I didn’t like the way they mucked up my mind, so I used alcohol instead. Stupidly, I didn’t consider that alcohol mucks up your mind, too.

The drinking fed a self-destructive spiral. Like the drugs I was taking for the arthritis, alcohol was a depressant – and when I took them in combination, their depressive effects multiplied. I started to question whether life was really worth living.-Daily Mail

Kathleen Turner is now back in the lime light and spending much of her energy on Broadway.  She’s also written a book about love and life with Rheumatoid Arthritis as well as her career as a Hollywood star.

Kathleen Turner

Kathleen Turner

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.

In the beginning…….

Sarah Keturah

Sarah Keturah

When I was first diagnosed with Rheumatoid Arthritis over two years ago, I was scared out of my mind. I worried that I would die early, my body would one day be filled with replacement joints, and that my quality of life had just gone downhill 100 fold.

With that, a variety of feelings came flooding in. I didn’t ask “why me?” but I did feel anger towards other people. I felt anger that they didn’t know what I was going through, that they complained about hangnails, colds and headaches and I felt anger that lots of people had advice for me. I also felt sadness of course that the life I once lived was now difficult and painful. And it wasn’t just any kind of pain, it was the kind of pain that had me crying several times a day. It was the kind of pain that made me think that child birth might be a piece of cake. It was the kind of pain that made me wonder how many months of this I could handle, and was my life over? My daily routine now consisted of a plethora of medicines with terrible side effects, some that made me scared I would one day have cancer.

Even before I was diagnosed, I pored through the Internet in search of what was wrong with me. I felt like I was dying. Surely I must be, I thought because my body every day was loosing functions. I could no longer turn my head or brush my teeth with ease. If I fell on the floor, not only would it cause excruciating pain, but I would be at a loss of how to get back up. I remember when RA was first starting, I was in a jewelry store and I had crouched down to look at some jewelry. I lost my balance because my knees were starting to be affected and when I reached the ground, I avoided putting any pressure on my wrists because they couldn’t bend or else they felt like they had just been broken. So here I was, in a public place and in pain, wondering how in the world I was going to get back up. And this was just the beginning, I wasn’t even at my peak of the debilitating stage RA can put you in. It was a couple of months later that sitting up from the couch required a helping hand. I was young and fit and yet my body was deteriorating at an alarming pace, swelling in all of my joints and developing noticeable bumps. Even my shoulder bones were poking out. When I woke up in the morning, it felt like I had smoked packs of cigarettes. My ribs constantly hurt. Sleeping was nearly impossible. My rib pain and other joints caused all positions except for lying facing straight up, too painful to bear. I woke up with every turn and twist. I couldn’t even stand the feeling of a blanket on my toes because the weight of the blanket on those small joints was unbearable. Am I exaggerating? Not in the least!

I had begun a new job, one in the industry and I was leaving my old one. My old job could have possibly started the inflammation process. I had been cutting cardboard for 10 hours a day using an Exacto knife. Hour after hour of constant pressure had turned my fingers into swollen sausages. It may have been just a coincidence, but in my opinion, this job had something to do with the onset of my RA.

In the first weeks of my new job, luckily my hands were able to rest. Not only were my fingers swollen, but they had eczema of some sort all over and I kept them hidden. The eczema was itchy and painful. I kept my illness hidden, thinking each day was my last. When I drove in the car in the morning of L.A. traffic I feared getting in an accident. Was I even capable of turning the steering wheel? My head certainly couldn’t turn easily any more. At night when I left my car, I didn’t even bother looking back and checking my surroundings. I wouldn’t be able to run or fight back. I felt as vulnerable as a newborn baby.

At this time I didn’t even have insurance and I was going to a local clinic. The doctor, who had a difficult time communicating with me, (English wasn’t her first language) finally prescribed Prednisone when I was on my last days of even being able to brush my teeth. Thankfully, this drug turned my life around and I was able to function a little better for some time before I got insurance and started seeing a Rheumatologist.

I began to talk about my disease to those who were close to me because hiding it was stressful and difficult. It’s hard to explain when you’re 30 why you can’t do something if you look perfectly healthy.

I realized soon enough that people just didn’t get it. Even in the very beginning as I became less functional and told my husband that I was looking into support groups on-line and I thought I had either Lupus or RA, his reaction was unhelpful. He didn’t want me to join a support group if I didn’t know what I had. It was as if he could just ignore what was happening and somehow it wouldn’t exist. I’m certain there was a part of him that didn’t believe me and felt I was making this disease manifest.

Time went on and my husband began to finally realize I had a real disease and it wasn’t in my head. I think all of my family “gets” that I have Rheumatoid Arthritis. Unfortunately, unless they read about it thoroughly this disease varies from person to person, so much that even the person going through it doesn’t really know what to expect on a day to day basis.

I imagine that it’s not just Rheumatoid Arthritis that has this type of variety. I think that’s one of the most important aspects of learning about a person’s disease is, is to know that just because you read about it doesn’t mean you truly understand it. Even as part of a support group, I realize that just because I have Rheumatoid Arthritis, doesn’t mean I know what another person is going through.

If you would like to be a contributor, please send your story to: sarahketurah@gentlehugscafe.com

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