Sometimes, You Have to Ask

I saw my rheumatologist for a three month follow-up recently. Incidentally, the day before my 40th birthday. Do I know how to get a party started or what? While I was sitting in the waiting room, two well dressed ladies came in and asked the receptionist if it would be possible to see my doctor. They were clearly drug representatives packing freebies. I had already been waiting forty-five minutes at this point, as had the gentleman a few seats away from me. I could not help but hope the drug reps were seeing the doctor after me.

Within five minutes, they were called to come back. I said to the gentleman near me, “I wish we were called that quickly.” He agreed and we began to talk. It was nice to swap personal health facts and experiences with someone that has dealt with wacky pain and inflammation. It was nice because he gets it and because we both had compassion for what the other has endured. He was not much older than me, drives a truck for Walmart, had a knee require surgery, soon after bodily joint pain and stiffness entered the scene and for the past few years he has been on methotrexate and a biologic that he self injects, and had a second knee surgery. The drugs are not getting the job done and he lives in pain.

I told him my body really let go after my fourth c-section and because I was nursing a baby, I researched alternative approaches. I shared with him the importance of looking at what you eat. He was surprised to hear that eliminating certain foods or chemicals can help take a load off your system. He had never heard that sugar was inflammatory. (Not only that–it’s like crack, people! Try to give it up for a month and tell me how you do. 🙂 ) I told him that I have done two different approaches with antibiotics. The first was nine months long, tough at the outset, progress was very gradual but awesome, and following it, I was drug-free and functioned quite well for a year and a half. Praise God. Now I have begun a second protocol and have been at it for a year, things are much better now than a year ago. He had never heard of the approach. I told him to check out the Road Back website. He was very interested and hopefully encouraged by the fact that I had experienced positive results. He was there to see my doctor after me. When I saw my doctor, I let him know his next patient might have questions. 🙂

Here are my current lab results from 10/2013:

Not bad, eh? Except for that MCV number. My doctor said that meant enlarged red blood cells. “Which could mean what?” I asked. He said, “Could be thyroid, but we’ve checked that and you’re fine, alcohol is not a problem for you, labs show liver and kidney look good, could be your B12 or folate levels…let’s get that checked today and I will have the nurse call you with the results.”

Here’s a tip for anyone coming up on a birthday and a note to self. Do not consult with Dr. Google regarding anything about your health until waaaayyyy after your birthday! I couldn’t help myself and looked for information about enlarged red blood cells. I’m not going to even write about some of the things I read about.

I remember seeing the MCV number high a long time ago on my lab results, in addition to MCH, but I recall my doctor not seeming concerned. I dug through my copies of blood work going back three years. The number has been up there for the past three years for both MCV and MCH. Interesting to me that it has my doctors attention now.

Lab results from three years ago (10/2010):

In looking at my lab results from my primary care doctor, I discovered that my B12 and folate levels looked good two years ago when they were checked and I have supplemented with a multi-vitamin daily since then and have maintained a healthy, whole-foods diet. I am guessing my levels will still be fine.

My doctor originally told me that he would keep me on minocycline for up to a year. I’ve passed the one year anniversary and was pleased that he didn’t mention taking me off and told me to schedule a follow-up three months from now. I am going to continue the minocycline indefinitely for now, as well as the sulfasalazine. I realized I would not see my doctor until the new year (hopefully won’t have to before) and wished him a Happy Thanksgiving, Merry Christmas and Happy New Year before going next door for more blood work.

Just for kicks, I did an online search today for information about long-term antibiotic therapy and this came up on page one of my search hits from Doctor Oz:

http://www.doctoroz.com/blog/jacob-teitelbaum-md/antibiotics-helpful-rheumatoid-arthritis

Thank you, Doctor Oz, for spreading the word!

And this:

http://recoveringarthritics.blogspot.com/2009/11/three-recovering-arthritics.html

She might as well be me talking!

I also searched the list of abstracts presented recently at the American College of Rheumatology Annual Meeting in San Diego in hopes that this treatment is being investigated further. Unfortunately, not really. To me, it is heart breaking. I found numerous studies involving biologic drugs, however.

I found the following chart in one of the abstracts. The chart displays the average co-pay for drugs used for RA under Medicare–$250-$650 for a biologic. Plain crazy. I scrolled down and found minocycline–$7.

So, what are the chances of pharmaceutical companies funding research studying long-term antibiotic protocols and their role in killing what can trigger certain autoimmune diseases? I’m thinking next to none because they stand nothing to gain! Sad beyond measure.

Antibiotics as a treatment option are not being offered as readily as biologics, if even at all. Take the patient I spoke with in the waiting room for example. We have the same rheumatologist and he had never heard of antibiotics as a possibility. And he has been dealing with wonky joint pain and inflammation for a few years now. Antibiotics have certainly not been the end all be all for me. And they come with their own scary list of side effects. But my journey with them has changed my life for the better and it is important to me to share that in the hopes it could help someone else.

Unfortunately, there is a great deal of information out there that our doctors are not telling us about. I have never had a medical doctor talk to me about what I eat and its role in disease, or the importance of managing stress and its impact on my body.

Table.   Coverage for Rheumatoid Arthritis Drugs in U.S. Medicare Part D Plans.
Drug	Plans covering drug (%)	Plans covering drug without prior authorization (%)	Plans Charging Percent Co-insurance (%)	Mean Co-insurance (%)	Average Copay Mean (SD) ($)
Biologic
Abatacept	54	4	100	30.1	601 (22)
Adalimumab	100	7	100	30.0	583 (12)
Anakinra	40	4	100	29.9	517 (19)
Certolizumab	59	1	100	29.6	650 (16)
Etanercept	100	7	100	30.0	547 (11)
Golimumab	42	1	100	29.6	580 (17)
Infliximab	100	7	100	30.0	255 (5)
Rituximab	100	8	87	29.5	611 (25)
Tocilizumab	40	1	99	29.7	335 (14)
.
At least 1 biologic DMARD	100	9	87	30.3	275*
.
Non-biologic
Azathioprine	100	34	10	18.1	7 (1)
Cuprimine	60	60	59	30.6	83 (6)
Cyclophosphamide	94	2	20	27.4	32 (3)
Cyclosporine	100	12	22	25.1	34 (2)
Hydroxychloroquine	100	100	10	18.1	5 (1)
Leflunomide	100	100	13	19.3	11 (1)
Methotrexate	100	85	13	19.8	5 (1)
Minocycline	100	94	10	18.1	7 (1)
Sulfasalazine	100	100	10	18.1	5 (1)
.
At least 1 non-biologic DMARD	100	100	11	18.2	4*
.*mean copay of least expensive drug covered

Here are studies discussing the use of minocycline for rheumatoid arthritis from pub med:

http://www.ncbi.nlm.nih.gov/pubmed/14528503

http://www.ncbi.nlm.nih.gov/pubmed/10047718

The following is taken from:

British Journal of Pharmacology © 2013 The British Pharmacological Society.

“Minocycline is a second-generation, semi-synthetic tetracycline that has been in therapeutic use for over 30 years because of its antibiotic properties against both gram-positive and gram-negative bacteria. It is mainly used in the treatment of acne vulgaris and some sexually transmitted diseases. Recently, it has been reported that tetracyclines can exert a variety of biological actions that are independent of their anti-microbial activity, including anti-inflammatory and anti-apoptotic activities, and inhibition of proteolysis, angiogenesis and tumour metastasis. These findings specifically concern to minocycline as it has recently been found to have multiple non-antibiotic biological effects that are beneficial in experimental models of various diseases with an inflammatory basis, including dermatitis, periodontitis, atherosclerosis and autoimmune disorders such as rheumatoid arthritis and inflammatory bowel disease. Of note, minocycline has also emerged as the most effective tetracycline derivative at providing neuroprotection. This effect has been confirmed in experimental models of ischaemia, traumatic brain injury and neuropathic pain, and of several neurodegenerative conditions including Parkinson’s disease, Huntington’s disease, amyotrophic lateral sclerosis, Alzheimer’s disease, multiple sclerosis and spinal cord injury. Moreover, other pre-clinical studies have shown its ability to inhibit malignant cell growth and activation and replication of human immunodeficiency virus, and to prevent bone resorption. Considering the above-mentioned findings, this review will cover the most important topics in the pharmacology of minocycline to date, supporting its evaluation as a new therapeutic approach for many of the diseases described herein.”

Found this on minocycline and ovarian cancer:

http://www.ncbi.nlm.nih.gov/pubmed/23593315

And the Winner is…

I’ve been walking around as seronegative RA girl for over a year now because my symptoms present very much like RA and that’s what doctors have told me I have. I can’t explain it, but I have never felt a peace in my spirit about this diagnosis. The fact that my blood work has never shown a blip of anything hasn’t helped the situation. As a result of sharing this with people, some have said I must be in denial as a result of not accepting the diagnosis, others have written off the true nature of my illness and have assumed it must just be stress, or not dealing with my past or not willing myself to wellness hard enough. (I’m over it now. But it sure did hurt at first.) I mention this because it amplified my need to reach out to others in pain. I felt such a need to connect with people dealing with similar symptoms. People who know the struggles that come mentally, physically and spiritually when your body starts to fail you. And so, I went with the RA label because I needed a direction. At least I had a label, right? I know that many of you have gone years without even receiving a diagnosis of any kind. And I’m so glad I did. Because connecting with others has been incredible. My fellow sufferers get it, thank God. And they are supportive, non-judgemental and compassionate.

Like many of you, I am often digging for more information online and reading the latest studies. I just recently learned more about an arthritic disease I had never heard of before while doing research before bed one night–psoriatic arthritis. I was led to look into this particular disease by someone on the Road Back bulletin board mentioning it in an answer to one of my posts. Thanks, Maz! You are an angel. She said that many times people diagnosed with seronegative RA find out later that what they had really been dealing with was either reactive arthritis or psoriatic arthritis.

I nearly jumped out of bed when I read the symptom list for psoriatic arthritis the night I was researching. You might as well have put my name at the top. And it said that often times nothing shows up in a person’s blood work. Hello! And sausage toes are classic–oh, HELLO! I’ve always referred to my attacked toes as sausage toes. I knew immediately that psoriatic arthritis is what I have been dealing with all along. It just eluded an accurate diagnosis due to the fact that I’ve never presented with psoriasis of the skin. I felt certain that this must be the correct diagnosis in light of a recent and lovely new symptom of mine. It sealed the deal in regard to the diagnosis for me. This new piece of the puzzle has caused all of my once thought to be random symptoms (back and neck pain, hip and ankle tendon pain) to connect like a puzzle under the symptom list for psoriatic arthritis (PsA). My new symptom is psoriasis occurring under my nail beds–toes and fingers. And it’s become quite unsightly. Yipee. I can cover my unsightly toes with polish. But I’m not the fingernail polish wearing type. I have four boys. I couldn’t possibly keep up with pretty polish on my fingernails if I tried.

I couldn’t believe what I saw when I began searching for pictures of psoriasis of the nail. The photos looked just like my toe nails. The situation with my toes has been ongoing for about a year and for the longest time only involved my two big toes. I never thought much of it because I thought it was a fungal issue that wouldn’t resolve itself with over the counter treatments. I did finally mention it to my rheumatologist two appointments ago because when I took the polish off my toe nails recently, I was shocked to discover that several other toe nails had become discolored. And now my fingernails are involved. My fingernails became involved after beginning antibiotics. In just a few weeks, the appearance of my thumb nails has rapidly changed. Shall we have a look see at what is going on? I’ve included a photo of painted toes as well because it shows what the toes on my left foot looked like before I began AP. Once I began AP, I acquired a lovely new sausage toe on my left foot to match the beauties on my right. So sad…left foot always managed to visually stay out of the line of fire until now.

Pre swelling on left foot

Post swelling and psoriasis of the nail revealed

Here are the finger nails affected. You can also see the swelling of my left thumb compared with the right. This puppy was the first joint to ever swell up on me and cause pain. It’s the one that first put me in a rheumatologist’s office.

Note orange discoloration on right side of nail (left thumb)

What began as orange discoloration has become this and is now separating from the nail bed. (right thumb)

So, I’m actually psoriatic arthritis girl–or PsA girl. Seems like an open and shut case to me. And I have total peace about this diagnosis being the correct one. I presented my findings to my rheumatologist at my last appointment and he said that he agreed with me but wanted my nail situation confirmed by a dermatologist before coding my charts with the diagnosis since insurance would surely follow me with it for the rest of my days. I see my dermatologist on the 14th.

I don’t know how or why, but in all of my research, I don’t remember reading about this disease. Or maybe I breezed over it since I don’t have any red, raised patches of skin and thought surely that can’t be what I have. I’ve heard of psoriasis, sure. But  psoriatic arthritis, no. The symptoms of RA and psoriatic arthritis are very similar, which is why I received the diagnosis I did.

On the one hand, it feels oddly wonderful to know that what is going on with me has a name and is happening to others all around the world. And having a peace about my diagnosis is priceless. But on the other hand, I’ve caught myself dealing almost all over again with the feelings associated with being told you have a chronic illness without a cause and without a cure. The fact that I now have another issue to deal with that is advancing very quickly–my nails–does not delight me. What’s next, my skin? My AP doc mentioned  I might want to consider Enbrel at my last appointment in lieu of my recent nail activity. Not yet. But thanks for mentioning. For now, I will continue with the antibiotics. Doc is giving me six months on these particular antibiotics before I have to call it quits with them. Fortunately, there are also success stories of people with psoriatic arthritis seeing improvements. Thank God!

It’s important to me to note the symptoms of psoriatic arthritis in the event that it may help someone else. Here is what can be found at WebMD:

What are the symptoms of psoriatic arthritis?

“Psoriatic arthritis frequently involves inflammation of the knees, ankles, and joints in the feet and hands. Usually, only a few joints are inflamed at a time. The inflamed joints become painful, swollen, hot, and red. Sometimes, joint inflammation in the fingers or toes can cause swelling of the entire digit, giving them the appearance of a sausage.

Joint stiffness is common and is typically worse early in the morning. Less commonly, psoriatic arthritis may involve many joints of the body in a symmetrical fashion, mimicking the pattern seen in rheumatoid arthritis.

Psoriatic arthritis can also cause inflammation of the spine (spondylitis) and the sacrum, causing pain and stiffness in the low back, buttocks, neck, and upper back. In about 50% of those with spondylitis, the genetic marker HLA-B27 can be found. In rare instances, psoriatic arthritis involves the small joints at the ends of the fingers. A very destructive form of arthritis, called “mutilans,” can cause rapid damage to the joints of the hands and feet and loss of their function. Fortunately, this form of arthritis is rare in patients with psoriatic arthritis.

Patients with psoriatic arthritis can also develop inflammation of the tendons (tendinitis) and around cartilage. Inflammation of the tendon behind the heel causes Achilles tendinitis, leading to pain with walking and climbing stairs. Inflammation of the chest wall and of the cartilage that links the ribs to the breastbone (sternum) can cause chest pain, as seen in costochondritis.

Does psoriatic arthritis cause inflammation of organs?

Yes. Psoriatic arthritis can cause inflammation in other organs, such as the eyes, lungs, and aorta. Inflammation in the colored portion of the eye (iris) causes iritis, a painful condition that can be aggravated by bright light.

Corticosteroids injected directly into the eyes of patients with iritis are sometimes necessary to decrease inflammation and prevent blindness. Inflammation in and around the lungs (pleuritis) causes chest pain, especially with deep breathing, as well as shortness of breath. Inflammation of the aorta (aortitis) can cause leakage of the aortic valves, leading to heart failure and shortness of breath.”

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.

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. 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.

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. I find this 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 pictures. Here it is. Lovely, huh? It was all over my breasts too. I looked like a strange Star Wars character in person. 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. I am not happy about losing function and being limited. But I’m handling it well because now I feel hope in addition to that peace. It is 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 a book I recently read–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 it is an incredible read if you are either battling autoimmunity or know someone that is. The Road Back talks about the science behind the approach and the thousands that benefited 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 a DMARD as well. 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 since antibiotics are inexpensive.)

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.

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 degree 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 the 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. 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.