Feeling Powerless, Yet Powerful!

The lovely Lana at Living it, Loving it brought to my attention that today is Bloggers Unite, “Empowering People With Disabilities”. Thanks, Lana! If it weren’t for you, I may have never known about this. Those with disabilities or those that love them are encouraged to raise awareness by sharing their experiences about living with a disability by blogging about it. This is certainly a theme worth writing about because when one is disabled, they feel anything but empowered, they often feel powerless. When my former rheumatologist told me during my first visit with him that I had rheumatoid arthritis, that there was no known cure, no known cause and chances of remission were very slim, I felt the rug yanked out from under me and the breath knocked out of me. I instantly felt powerless. Powerless to control what was going on in my body and what my doctor said was going to happen to my body. Powerless to be the wife and mother I wanted to be. Powerless to simply do and be all that I hoped I could be.

As we all know, disabilities come in all shapes and sizes. There are those that are visible and more than obvious to everyone they encounter. And there are those that are invisible. As one who suffers from an invisible illness, which rears it’s ugly head of disability without any warning, I have dealt with struggles that have taken place within myself, with my doctors and in my relationships with others. It hasn’t been easy. I have moaned and cried, thrown a few pity parties, prayed, pleaded and have seen relationships suffer as a result of my disease.

When you struggle with a disability, you often face criticism and judgement. It can come from perfect strangers, co-workers, friends, loved ones, and medical professionals. I have felt the judgement of friends that might as well just roll their eyes right in front of me when they ask me how I am doing. I don’t like to tell most friends how I am doing anymore because they either make me feel like a fraud, offer suggestions or cures that belittle what I am struggling with or criticize the way I have handled my disease. I have even felt like some that care about me believe that I have brought this on myself. I explored this road and it brings with it a lot of hurt and pain. It’s not to say that our psyches can’t wreak havoc on our systems. But I no longer believe for a second that I have been the sole cause of my disease.

Now that I deal with pain on some level everyday and have to use a handicap placard on particularly difficult days (when I used to be the girl that parked as far as possible for a little extra exercise), I notice everyone that walks with a limp, crutches or a cane, or must maneuver themselves around in a wheelchair. My heart cries out to them. But most people don’t notice my disability. (Which quite honestly, I am thankful for. I could do without the added criticism, judgement and sympathy.) And although I appear healthy and able to the outside world, on most days it hurts when I walk, when I get dressed in the morning, when I cook, when I shower, when I carry my baby, etc. This brings with it a feeling of loneliness and isolation at times. And when those that are disabled must also struggle to work and live and get the support they need from friends, family and government in addition to these feelings, it can feel like an awfully unpleasant world to live in at times. This is why the need for greater awareness is critical.

In the midst of this though, I believe we have the ability to feel powerful. For me, this has come from discovering that I am bigger than my disease. It does not define me, what I love and what I believe. I’ve had to dig deep within my spirit and that has brought power. Power to be brave despite the uncertainty of my future now that I have been diagnosed with a lifelong disease, power to accept that this is my new norm, power to let go of the things I can no longer do. But most importantly for me, dealing with a disability has brought me closer to Christ than I have ever been before. And that’s what I call power!

Blessings to everyone dealing with disabilities and those that love them.

Advertisements

The Price We Pay

I picked up my medical records from my former rheumatologist. Funny, they gave me an hour window to come in and pick them up. Turns out it was during lunch when there were zero patients in the waiting room. What did they think I was going to do–cause a ruckus? When I arrived at the office, my records were not ready and the woman up front disappeared while my four boys and I sat and waited and they did what they needed to do to get them ready. While we were waiting, my doctor walked by behind the front desk area. What are the chances of that? I would have loved to have been able to talk with him.

I love having copies of my records in my possession. LOVE it! So much is missing in my doctor’s notes. No mention of family history and allergies and nothing specific about the supplements I take consistently. Also said I was taking 5 mg of prednisone a day and that is so not the case. I tried the steroid route. Helps temporarily and then the pain comes screaming back. No thank you. Would rather deal with the pain minus steroids if I can get away with it. I remember him recommending that I take 5 mg maintenance dose. But in his notes it clearly says I have been doing that for some time.

Nothing in me has wanted to sit down and put my thoughts in writing for the last few weeks. I feel like I took a mental trip of sorts. Actually, I feel like I went a little crazy. Just about snapped. Felt like I had been pushed to the edge. Won’t get into it. Mentally, feeling much better now. Physically, I’m a mess. And as most of you know from experience, stress aggravates pain without a doubt. A price we RAers pay. But this is just one of the ingredients in the cocktail causing my current pain. Part of the reason I am feeling better mentally is because my three oldest boys are with their father (who is different than my husband now) for the month of July. A huge amount of stress has been lifted due to the sibling rivalry being gone. But in it’s place is the heavy heartache that comes in a mother’s heart when she hasn’t seen her children in a while. I have tried very hard not to think about them too often (this is practically impossible), but it has helped me get through the month far better than last year. Last year was absolutely awful. I won’t get into it or the situation they are in when they are with their father. Another time, perhaps. But not worth my energy right now.

My rash has completely disappeared without the assistance of anything pharmaceutical. Maybe the disease playing peek-a-boo. I finished the lymph cleanse and have continued to dry brush my skin to stimulate the lymph system. There was a study mentioned in a book I recently read about RA patients improving when their lymph system was drained. As soon as tube was removed, their symptoms increased again. Very interesting. I had my husband take a couple pictures of my rash while it was visible. I showed my eleven year old the pictures on my camera and asked him if I should put them on my blog. He said, “No way. It looks gross.” It almost kept me from posting a picture at all. I am going to print the pictures to take to my new rheumatologist in August. No rheumatologist ever saw my rash. My dermotolgist did, however. She also took pic.s. So, here it is. Lovely, huh? It was all over my breasts too. I looked like a Star Wars chic in person–or a freak. The rash was only on the front of my trunk, not the back. It disappeared gradually, just as it appeared.

Close up shot of a section of my trunk.

I have hope for the first time in a while in relation to my disease. I’ve had a certain peace about the fact that my body was being attacked little by little for a while. Was so not happy about losing function and being limited. But was handling it well. But now I feel hope in addition to that peace. Such a good feeling. Feels dangerous too though. There is the part of me that doesn’t want to get hopes up only to have them dashed. But if AP therapy does not offer much relief or management of my disease, then I will just have to go from there.

The hope I feel now is due to what I read while I was “away”. I read the book The New Arthritis Breakthrough by Henry Scammell. Within this book is the book written by Dr. Thomas McPherson Brown (pioneer of AP therapy), The Road Back, Rheumatoid Arthritis: Its Cause and Its Treatment. It’s fascinating, folks. I think that it is an incredible read if you are either battling RA or know someone that is. The Road Back talks about the science behind the approach and the thousands that benefitted from it. It speaks of the depression that many people feel (but don’t talk about) and how difficult it is to keep that to yourself at times because you get tired of telling people you are in pain. (And quite frankly, I’m sure they get tired of hearing about it.) I know for me–if I don’t talk about the pain every now and then, I’ll blow. We have to talk to someone sometimes. It’s a human thing.

I think this book is worth reading simply for the knowledge that can be gathered from it. I gobbled the book up. While I read it, I dog eared it like crazy and now I am going back through it and highlighting sections. I have to ask why AP therapy was never mentioned as a treatment option for me? My rheumatologist offered various drugs, but never antibiotics. The Arthritis Foundation has acknowledged that antibiotics can be an effective DMARD. American College of Rheumatology recognizes minocycline as DMARD as well.  And the patient accounts from Dr. Brown’s book (he treated 10,000 patients successfully with AP therapy) and the current patient surveys taken by The Road Back Foundation further show the benefits AP can have for many. So, again, why are antibiotics never mentioned as an option? (I suspect the drug companies have a hand in this.)

I called Joe on air to ask him about AP and he said that I should go for it considering I am looking at either the methotrexate or Humira route–which is where I was headed once I weaned my little guy. Joe went on to confirm what I have found in my research–that there are legitimate cases documented of people benefitting from AP therapy. The experience that I’ve had with my disease and the history of illnesses that I have had in my lifetime are reflected in the patient accounts in the book from people that have improved with AP.

So, this is why I have felt hope. Hope that with trial and error and antibiotics, I may be able to reduce the disease activity in my body and manage my pain better. The interesting thing about AP therapy and my situation is that the class of antibiotics found to be the safest and most effective is the tetracycline class. I had a crazy reaction to tetracycline in seventh grade. There is a sticker on the front of my medical records from when I was a child that says “Allergic to Tetracycline”.  I developed a 104 fever and a rash that covered my trunk. Interesting wouldn’t you say? This rash itched to kingdom come though–unlike my recent one. The symptoms would go away when the drug was removed and return when the drug was reintroduced. I have to wonder now after reading The Road Back, was it an allergic reaction to the drug or was my body killing off something extremely toxic to cause that kind of a reaction? Something so toxic that it could one day cause joint deformity and pain throughout my body? Perhaps. Will be interesting to see what happens if I begin taking an antibiotic within the tetracycline family. At least I have a few options to play with.

I recently received a call from my dermatologist. She is a popular doctor and is always booked solid. After she saw my crazy rash and the patch test and biopsy came back revealing nothing conclusive (big surprise) she asked if she could bring my file before a group of dermatologists in the city that meet monthly. I said, “Sure!” She called me at home the other day to tell me that they discussed my case and concluded that it could be anything from a bacterial fungus to cancer. Well, that helps. All that education and thousands of dollars between them and that’s what they come up with? I told her that I had recently read about AP therapy. She said she would be willing to prescribe minocycline for me. Told her I was seeing a new rheumatologist and would keep her posted. Good to know that I have another doctor in the picture that is willing to work with me and AP route.

I am not doing so great with the weaning of my little guy in preparation for this. Knowledge really stinks sometimes. I transferred my other three boys to organic cows milk without a concern in the world, and they are very healthy kids with zero allergies. But now I know too much about dairy and it’s effect on our bodies. So I am reluctant to introduce cow’s milk now. I tried goat’s milk with my little guy because it is much easier for the body to digest. He made an audible gagging sound after he drank it. It was hard not to laugh. And this little guy likes to eat everything. I’m a mess though and someone is going to be drinking cow’s milk starting tomorrow to put the weaning pedal to the metal. Fortunately, I have access to raw, organic milk from grass fed local cows through my farmer’s market. But that isn’t until Sunday.

Happy Baby!

Blessings to you!

Good Riddance

The words below were in my inbox today.  Max Lucado wrote them.  He is one of many people that has provided inspiration in my life.

To Be Saved By Grace

“God gives us a free gift—life forever in Christ Jesus our Lord.” Romans 6:23  “One of the hardest things to do is to be saved by grace. There’s something in us that reacts to God’s free gift. We have some weird compulsion to create laws, systems, and regulations that will make us “worthy” of our gift. Why do we do that? The only reason I can figure is pride. To accept grace means to accept its necessity, and most folks don’t like to do that. To accept grace also means that one realizes his despair, and most people aren’t too keen on doing that either.”

I have been thinking a lot about the same thing in the past few days.  The idea that my pride gets in the way of the cross–which for me represents what God has done for us and what He is going to do.  I lose focus over things like pictures of babies with autoimmune rashes while looking for some semblance of my own rash, because I start to worry about my own children. Does anyone else worry that their children will have to deal with an autoimmune disease? And I read studies on pubmed that use words like mortality rate and RA, and I lose focus. But that’s where I get to see the pride because I realize–who am I to worry about what is in store for my children or when my time here is up? Am I so special that I should get to decide how long I stick around on this earth? You know? God loves me, but His ways and His plans are so much better.  One day at a time is how I have been living lately, and it has been much more enjoyable that way. I enjoy the little moments and the little things a little more lately. Things like singing silly songs and making animal noises with my one year old, a french pressed cup of freshly ground organic coffee (oh yeah), time alone with my husband. Silly to think that I have fretted over the fact that I might not live to be 100 like I always hoped I would. That my days feel a little more numbered right now. Of course, I am hoping for a cure and I’m checking up on the latest things scientists and doctors are doing. But at this stage of the game, living to be a 100 is not looking too good.  I would probably be such a mess anyway that I wouldn’t want to be alive!

As I drove somewhere this morning and was alone for the first time in the car in a while, I had a peace about exactly where I am at with my disease. My hands and my feet hurt terribly some days. But on other days, I get around ok.  I always tell my kids when they express frustration over the fact that I am battling something that it’s ok that I am. It is. It’s ok. And when I stray from feeling that it’s ok, I know at least that I still have a way back-His Word.  I am totally standing on His promise.  And I have to remind myself of what is really going on and what is yet to come sometimes.  It’s pretty exciting if you stop and think about it.  And boy what a relief to think about it.

My rash is spreading and changing colors.  Really need to take some pictures of it. Still doesn’t itch, but it is crazy looking. Discovering that skin rashes are common with JRA and Still’s disease.  Was not too familiar with Still’s disease until recently after digging around for pictures of other peoples’ rashes (which led to pictures of little ones).  Along with lots of digging and researching, I have been doing a lot of blog hopping. Thank you bloggers for having blog rolls.  I read  about Southern Gal with RA and her experience trying an antibiotic protocol.  I thought, hmmm, I’ve heard of this–why have I never really looked into it? I followed up with research about AP, and then with the Roadback Foundation. If I recall correctly, Southern Gal has to travel three hours to see a doctor that will prescribe an antibiotic protocol for her patients. That just stinks. I contacted the Roadback Foundation to obtain doctor references for my state and told them that I was willing to travel (they said to mention whether you were or not).  I got a reply the same day–this was yesterday.  There is one doctor in my city on the list.  The other doctors are hours away.  The e-mail said that I should contact the doctor to find out if they are still prescribing AP.  I quickly did a search on the doctor and discovered that he is 8 miles from my house. Wow.  Hello.  Feeling a God thing happening here. He is right under my nose.  Just down the street. I read reviews about him on various doctor rating sites and they are great.  (Love the internet for info.!) He is in his sixties and has his name on several research studies, and the reviewers said he was unhurried and his protocols worked for them.  Nice.

Today, I called my current rheumatology office to follow up with a call I made to the office manager two days ago.  I decided to call and speak with the office manager instead of writing a letter about switching doctors.  Thought it might prove quicker. I poured my heart out to this woman named Helen (while fighting tears–hate it when that happens) and explained how my doctor had basically been a big jerk and made my life more difficult and was there anything she could do to get me an appointment with the “nice” doctor. She thanked me for sharing my story and said she would talk with both doctors to see what she could do and would get back to me. Didn’t hear from her yesterday and since I am not getting better and it takes a while to get in with a new doctor, I decided to follow up and call her this morning. She said the “nice” doctor said he is sticking by the office policy and I won’t be able to switch doctors.  I asked her what my current doctor said in regard to not signing my handicap placard form. She said that the state is really coming down hard on physicians for disability claims and things like handicap placards. Are you kidding me? I said, “If you knew me, you would know I was once very active and have been healthy most of my life. And asking for a placard was not easy.”  She said, “I don’t doubt that, but the physicians have to be careful these days.” Then I asked her what I needed to do to get my records. I am going in tomorrow between noon and one PM to pick them up. What a pain. But can you believe that I just acquired the name of another rheumatologist that is right down the street? I was looking at rheumatologists online the other day and it was a bit overwhelming to think that I might have to narrow it down to one and start all over.

So, good riddance to my old rheumatologist. Feels good! Can’t wait to get my file and see everything my doctor has written about me. This is going to be great!  I wish my doctor the best, but I hope he at least learns a little something from this in regard to how you treat your patients. But as my husband pointed out–they aren’t hurting for business.

I then called the new rheumatology office. I know this place is older and does not have a fancy infusion center like my other doctor’s office. They don’t have a website either. The other office did. But the staff was much more pleasant and I was able to speak with the doctor’s nurse right away. Awesome. I told her that I was not an established patient and asked her if the doctor still prescribed AP. She asked who referred me and I told her that I was given his name by the Roadback Foundation.  She said, “It’s a foundation? And what is it–AT?” I’m thinking she is not aware of AP. She got back to me today. I told her that I never got a call back on the same day before and thanked her. She said that the doctor told her to tell me to keep my new appointment with him (first available was August 3—which stinks) and to bring everything with me that is part of my current protocol. I’m liking this guy already. My old doctor could have cared less about anything I’m taking because nothing I was taking regularly was a pharmaceutical. Whenever I would tell him about what I was doing or what type of exercise I was engaging in he would kind of smirk and type on his laptop.  I told my husband that I have between now and August 3 to really work on weaning my son. Cue the water works. I know it’s time. I want to be ready, or at least close to being ready to try the drug route when I see this new doctor.

Praying for my sisters and brothers.

Up to Breath

He joined the party as soon as the last guest left.

Woke up this morning and couldn’t go back to sleep.  Decided it was about time to blog. I have not had a chance to respond to the recent comments on my blog.  But I hope to soon.  They really moved me. I started working on a different post this morning. Until I finish it, I want to at least get up a shorter post. I feel like I can breath now and have the desire to sit down and write something finally. Had to make it through a huge birthday party. The stress was overwhelming to say the least. More people in my home at once than ever before. I wanted to see everyone that came and visit with them–just not all at once. Also felt like a coming out party of sorts for me since the question, “What is it that you have again?” came up when I was sitting down to eat.  Some at the party know that I have been dealing with RA symptoms and pain, while others that are good friends are completely clueless.

I have actually been feeling pretty good lately.   I’ve been taking a hot epsom/sea salt bath in the morning now and dry brushing my skin, finally making regular massage therapy appointments and noticing that DHEA has definitely boosted my energy. So, for now, I feel comfortable continuing with what is working. And I do say, for now. I am also rebounding on a mini trampoline to stimulate my lymph system, among many other bodily systems. A real trampoline would be great. Maybe some day. Of course, jumping where it’s air conditioned is much better in the summer! And not sure my feet could handle serious jumping.

Dealing with a strange rash around my breast area for few weeks now.  It is in spots and patches of varying sizes and isn’t raised. They biopsied a piece of skin on my breast last week. The stitches fell out two days later and weren’t supposed to be removed for another week and a half.  Girl that stitched me was in training.  I am not even going to go there right now regarding this incident. Lab report came back as probably dermatitis. My Dr. decided to put a patch on my back for two days to test me for 29 different allergens.  I thought the whole process was somewhat ridiculous, but insurance was actually paying for this, so I went along. And maybe something was ticking my skin off.  If so, I thought it would be good to find out.  I did not react to anything. I have also had an ELISA/ACT test done in the past to test for allergens.  (More about that someday.) I did find an interesting study on pub med about rare RA related skin rashes and found pictures on a John Hopkins site.  It’s not going away and is spreading in patches down my trunk.  All the Dr. could do was offer a steroid cream.  So not happy about this.  It doesn’t itch and I don’t even know it’s there unless I’m looking at it.  But like I said, it’s not going away.

On another note, I finally made a decision about my current rheumatologist. He’s getting the boot! I called my Dr.’s office this morning and asked for a follow up appointment with the “nice” rheumatologist. I now have an appointment to see him next week. Haven’t spoken with him since November of last year when he was filling in for my Dr. and did a boat load of bloodwork. I just called (a few hours later since they are in the same practice) and cancelled the other appointment I’ve had for a couple months with my other Dr. (the not so nice one).  I called with more than a days notice remaining and the receptionist said they require a reason for canceling (huh?!), and will I be following up? What am I supposed to say? I am canceling because  Dr. blank was insensitive and I don’t want to give him the time of day? And yes, I am following up–with ANOTHER Dr.  Can you pass that on to my Dr., please? I just told her that I was canceling because there were no changes and I will be following up.

The Call That Said it All

An impromptu birthday celebration before school. Can't believe baby is one!

I’ve been sitting on the post below for about a week.  It’s taken me a while to sift through things in my mind lately regarding my care.  I’ve also needed to process something that happened that was “other worldly” and powerful. The kind of powerful that gives me the chills when I think about it.

Spring has sprung! Snapdragons from the farmers' market.

I had a follow-up appointment with my Dr. of Naturopathy, Joe, on Wednesday. I discovered him and his partner Len and their broadcast last year on satellite radio.   Joe has been a Godsend for me because he has been an incredible source of support. What I love about Joe’s approach is the combination of conventional and alternative medicine. In addition to being a Dr. of Naturopathy, he is a pharmacist and a clinical nutritionist. But most importantly, he is a God fearing man. He prays for me and is an incredible warrior for Christ. Unfortunately, he is halfway across the country from me. So, meeting in person is out. But he and his partner do phone consultations. So, our Dr. / patient phone relationship began in October of 2009. Without question, my consult with Joe on Wednesday was the call that said it all.

I last spoke with Joe in February. I’ve been following his protocol diligently since then and have known that if things didn’t start looking up, I was going to have to look at starting pharmaceuticals.  I knew this call represented a crossroads for me in terms of how I handle this battle.  In fact, I pretty much knew what Joe was going to tell me based on what has been going on in my body. And I was right. Basically, it’s time to bring out the big, nasty guns. (I can just hear my rheumatologist now–it’s about time you crazy woman!) Look, I’ve been doing research into a million things since my body started going haywire and I have made careful decisions in regard to my care and the health of my baby. I know about the current research behind the early and aggressive treatment of RA. I also know that a large part of the damage RA causes occurs in the first two years. Guess what?  Two year anniversary coming up in June. So, I’m looking at permanent damage to some fingers and toes as souvenirs so far. I know some of you may think I am completely off my rocker. But you have to understand that the choice to breastfeed my baby is extremely important to me–as is my decision to hold off on the pharmaceuticals for as long as possible. People have told me that I have to think of my own health first because I have to be able to take care of my baby.  I know this. And I knew that this was going to be a risky battle if I chose to hold off on med.s. But pharmaceuticals don’t come without a price tag either. And the benefits that a child receives from breastfeeding aren’t temporary. They last him a lifetime!  And on top of that, there are benefits for the mother too.

Breastfeeding protects your baby from gastrointestinal trouble, respiratory problems, and ear infections
Breastfeeding can protect your baby from developing allergies.
Breastfeeding may boost your child’s intelligence
Breastfeeding may protect against obesity later in life
Breastfeeding may protect your baby from childhood leukemia
Breastfeeding may protect your baby from developing type 1 diabetes
Breastfeeding may lower your baby’s risk of SIDS
Breastfeeding helps you lose weight
Breastfeeding can lower your stress levels and reduce postpartum bleeding
Breastfeeding may reduce your risk of some types of cancer
Breastfeeding may protect against osteoporosis later in life

I recently learned of a study that links breastfeeding and RA.  Researchers at Harvard’s Brigham and Women’s Hospital published a study in 2004 in Arthritis and Rheumatism that discovered breastfeeding lowers a woman’s risk for develping rheumatoid arthritis. For women who breastfed for two years or more, the likelihood of coming down with RA was cut in half. Breastfeeding for one to two years, reduced the risk for RA by 20 percent and breastfeeding for less than one year did not impact the risk for developing RA. The time for breastfeeding was for all children in a family. Trouble for me is that I am currently breastfeeding baby number four and I nursed each of my children for more than a year a a half.  That puts me at five and a half years total so far.  Guess I didn’t fall into the group who’s chances were reduced by 50%.  Go figure.  But what if breastfeeding is helping me with my disease in some way right now.  What if it is helping to keep the fire a little cooler.  I’m certainly not counting on this.  I just wonder.  I was however, one of the fortunate ones that experienced remission during my second trimester.  My pain promptly returned somewhere around week two or three after delivery though.

Another reason why I have chosen to delay pharmaceuticals is the unclear nature of my disease.  I am seronegative and my CRP level is 0.3–in addition to everything else in my blood work showing up normal. My rheumatologist has said that the disease does not appear as aggressive as some based on my numbers.  But due to the fact that I now have permanent damage/deformity to my fingers and toes, swelling and inflammation, and live in pain, he has told me it’s “time to stop messing around”.  But then there is the current study that states, “This data reveals that people with rheumatoid arthritis (RA) who test positive to certain auto-antibodies (these are markers that can indicate the presence of active disease) are more than twice as likely to achieve remission when taking MabThera (rituximab) plus methotrexate (MTX) than those who test negative.  Also, people who are seropositive are three times more likely to get a significant improvement in symptoms with rituximab than people who are seronegative. Approximately 80% of patients with RA are seropositive for one of these auto-antibodies, known as ‘rheumatoid factor’. Until now, no research into the treatment of RA has been able to identify biomarkers to pinpoint which patients would respond better to any specific treatment.”  Because I am seronegative, I am not encouraged about trying pharmaceuticals based on the conclusion of this study.  It’s not to say that the drugs might not help, but the study puts me in a smaller category of people who experience success.

You should know I have a thing for furry creatures big and small.

My husband and I don’t watch much t.v. We don’t have cable and we get the local channels in HDTV for free with an antenna. And when we do watch t.v., it is usually one of the three public television channels we get.  Geez–we sound like old people.  But it’s because we are usually on our internet devices at night when the kids are all in bed.  And really, because there is so much garbage on t.v.  Don’t get me wrong–there is also a lot of awesome stuff of t.v. and shows that are really enjoyable.  And I know about TiVo. But I am usually on my MacBook Pro and my honey is on his iPod Touch.  So imagine my disgust when I watched a couple of shows on the big networks last night and discovered how many pharmaceutical commercials there are on t.v.  WOW…. I mean, wow…  It’s jaw dropping for me.  And to hear the list of side effects read — wow….   I heard some of the very side effects mentioned that my naturopath has been warning people of for years with these drugs.  Often the side effects are not associated with the drug when reported to Dr.s.  They are perceived as a separate disease, when in fact, the symptoms are a result of the toxic effects of the medication on the body.  I recently heard a study discussed on Joe’s radio call in show about a heart drug that has now been linked to drug induced autoimmune disorders.  HELLO!  This is just another piece of the many pieces of information swirling around in my head impacting the decisions for my care.

Mama recently brought two babies around. This is the only shot I was able to capture of her with one of them.

Joe said  on Wednesday that he has never encountered anyone like me. He has seen significant improvements in other patients battling RA that have done some of the same things I have done.  He said it is as if my disease is virulent.  I might also mention that I have strange red patches on my face and now recently on my chest.  My dermatologist has done a biopsy of the skin on my face and now this past week, of my breast.  Joy.  She has been stumped  about my patches since day one.  She calls me an enigma. I bet I can predict what the latest biopsy will show–nothing conclusive!–just like the first one.

Now here’s where the “other worldly” experience comes into play. After Joe and I discussed what my next course of action should probably be, which also includes having to wean my little guy, the subject turned. Joe began to talk about spiritual warfare and the fact that he didn’t believe God gave me this disease, but that He was walking with me.  Joe proceeded to basically call the devil out for his role in disease in our world. And then, the phone line made an audible electronic sound and went dead. I knew the second it happened that it was not a coincidence that it occurred when we were talking about our battle against evil. I was on a landline, and so was Joe. Joe called me back and he proceeded to talk about the spiritual battle we are in. Then just as he began to say the word “devil”, the phone went dead again. Joe called me back a second time and I couldn’t hear him.  The line had gone dead as soon as I had picked up the line.  Joe called me back a third time.  I said, “You got cut off in the middle of word “devil”!  He said it was obvious what we were dealing with based on the fact that we weren’t able to carrying on a conversation about it.  Can you say creepy?  Folks, I get a sick feeling in my stomach and a creepy crawly feeling on my skin every time I think about it.  This is the third time I have been disconnected while talking to someone about the devil.  I feel uncomfortable, yet very strongly about sharing what happened.  It was very real.  This battle is serious!

This guy gives me the creeps, but he puts a face to evil. He is one of my boy's Star Wars figures that was modified with a few Sharpie markers.

At the end of my consultation, Joe prayed a prayer for me and my family that moved a mountain somewhere.  I am not kidding. This man can pray for God’s people! And he also said he would look through my file again just to make sure there wasn’t something he was missing. A few days later I received a package with a bottle of DHEA inside. I was surprised and as curious as could be. Maybe Joe was onto something. I am now taking a very small dose (12.5 mg sublingually in the morning and will eventually increase to 25 mg) and will see what happens. What am I hoping for?  What do I expect?  At this point, nothing.  Don’t want to get my hopes up.  But here’s what I would love to see– a little pain relief happen. I do not expect this to alter the course of my disease. But I am hoping that it might help with the pain the destruction has caused. Needless to say, I’ve been researching DHEA and reading all I can. The Mayo Clinic describes DHEA in this way–“DHEA (dehydroepiandrosterone) is an endogenous hormone (made in the human body), and secreted by the adrenal gland. DHEA serves as precursor to male and female sex hormones (androgens and estrogens). DHEA levels in the body begin to decrease after age 30, and are reported to be low in some people with anorexia, end-stage kidney disease, type 2 diabetes (non-insulin dependent diabetes), AIDS, adrenal insufficiency, and in the critically ill. DHEA levels may also be depleted by a number of drugs, including insulin, corticosteroids, opiates, and danazol.

There is sufficient evidence supporting the use of DHEA in the treatment of adrenal insufficiency, depression, induction of labor, and systemic lupus erythematosus.

No studies on the long-term effects of DHEA have been conducted. DHEA can cause higher than normal levels of androgens and estrogens in the body, and theoretically may increase the risk of prostate, breast, ovarian, and other hormone-sensitive cancers. Therefore, it is not recommended for regular use without supervision by a licensed health professional.”

Scientists also believe there are possible hormone factors involved in RA because significantly more women than men are affected and because pregnancy sometimes improves the disease and symptoms may flare when the pregnancy ends. In addition, some women develop RA around the time of menopause. Reading about it’s effect in our bodies has been fascinating. I am willing to be a guinea pig to see what happens.  I actually noticed a difference within a day of beginning the DHEA in how I felt.  I detected an increase in my energy level.

After months of pleading, all three of the boys' desks look clean. Hallelujah!

But here's where it ended up! They did finally get it off the floor. The contents of one desk is still stuffed in a bag awaiting sorting.

At this point, it’s still one day at a time for me.  I know all signs point to pharmaceuticals, but I just don’t have a sense of peace about giving my rheumatologist the green light to write me a prescription just yet. But I feel like I am very close to becoming his guinea pig.

Upon closer inspection, I discovered the piles my son made when he was sorting the contents of his desk.

My son finds beauty in the little things. His pockets are always stuffed with found objects.

In the meantime —

Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. – 1 Peter 5:8

Put on the full armor of God so that you can take your stand against the devil’s schemes. – Ephesians 6:11

Would you believe I found this fortune amongst the pile?

Remembering my sisters and brothers in prayer.  May your day be blessed!