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!

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13 thoughts on “The Price We Pay

  1. Your previous doctor? I was going to say no comment, but it sounds like I could have done a better job in my sleep.

    You put together a great post. I refuse to subscribe to people’s blogs…for a variety of reasons. One of them is because everyone thinks they are a good writer. They mangle metaphors and use bad grammar. You, sister, are a great writer!
    Anytime you need to discuss anything, anyone you call a friend would love to listen and relate in whatever way they can. Always know this.

    • Girl, you rock. You always know how to make a person feel better. : ) Love ya, sis. Was so great to get your comment this morning. Today is a really hard day. I went from being able to get around big stores and the house to not being able to get from the couch to the bathroom without incredible pain in both feet. Typing right now–forget about it–shouldn’t be doing it. Trying to give myself pep talks. I actually took a pain pill yesterday and this morning. You know how I feel about med.s. Pooh. Haven’t taken anything since my surgery with little guy. But just sitting still hurts terribly. Wanted you to know how much I appreciated your support and sweet words. You, girl, have the healthiest babies on the block!

  2. Part the stress that this disease brings with it sends into multiple directions and moods. You are absolutely correct as there so much we pay for simply because we are sick.

    Of course, you miss your boys and they will be back in a few weeks and you will wonder why you missed them. I know that feeling and well, that boys will be boys.

    A lot of rheumatologists are not on board with AP therapy and mostly because much of the research is relatively new. It was researched aggressively for awhile, put aside, and then new research just emerged.

    If you are worried about allergies with cow’s milk, how about organic lactose free or organic soy? My toddler only drinks lactose free. Of course, the worries are just your nerves – motherhood is the hardest job on earth. And mothers don’t like change and that reflects on their children.

    Omega 3 is also good for inflammation and cardiovascular health but you already know that especially with the all natural route you take. MILs are like that – don’t let it get to you. You do what you think is best for your family and ignore the MIL stuff.

    Hope that you are feeling better now that you have gotten all that stress down in writing. It really helps. Take care.

    • Thanks, Lana! I’m having a crazy flare. Body is just not calming down. Seems to have coincided with my trip. Or it might have been the straw that broke the camel’s back. It sure did help to get stuff off my chest about MIL though. Didn’t bother me today.

      You are so right about missing my boys too–they will come back and drive me crazy and I will indeed wonder why I missed them. Can’t wait to see them though.

      Hope you are doing well!

  3. Just finding your blog. Wow! We have a lot in common. My husband and kids are raw milk drinkers and we love eggs here too. We aren’t even afraid of them. I don’t do dairy though. Not big into soy but love coconut milk for baking and almond milk.

    I am really interested in hearing how the AP therapy goes.

    • Hi Cathy!

      Glad you found my blog. Love meeting people that I have things in common with. I don’t do much dairy. I put heavy cream in my coffee and splurge on ice cream from time to time. I have tried soy, rice, almond, and coconut ice cream and I have to say the dairy form wins for me. Coconut chocolate ice cream is delicious though. I too bake with coconut milk. It is primarily what I cook with and drink. Love coconut yogurt. And coconut oil is great too. I put a scoop in smoothies and occasionally cook with it. Before I learned that there were different forms of the oil to cook with, many of my dishes had a coconut flavor to them–which wasn’t always a good thing. Now I use an oil that you can’t even taste.

      Will keep you posted on the AP therapy. Working on the weaning right now. Trying to make it as pleasant and stress free as possible for little guy. As long as I keep his belly full, he does ok. Turns out he is not a fan of any form of dairy. Might be an acquired taste for him at this point, or he may end up having a diet that consists of little to no dairy. Glad we have so many wonderful things to eat in this world and I’m not brainwashed into thinking that my baby won’t thrive if he doesn’t cow’s milk.

      Hope your day is wonderful. : )

      Wait–Cathy, I just realized who you are! I have been reading your story for a few months now. Stumbled on your blog before I ever began blogging. You were one of the few that I could find that was taking a natural approach to managing your disease. So, I was instantly interested in your story. I check on you from time to time and have been meaning to introduce myself. Love the pictures of your family. I once taught my kids at home and loved it. And then I became a single mom and it became tough to be a teacher and a mom to three little boys. God put it on my heart to get my kiddos into a school. We were so blessed to find an incredible private school just down the road from us.

  4. Good luck with the weaning. Both of my kids were long time nursers so I know how important that is to us mommas.

    Thanks for your recent comments on my blog. They have been a tremendous support and I am so glad to have finally met you. 🙂

  5. I can’t remember how old your lil guy is, but I had to deal with small amounts of what you got from your MIL with both my MIL and my own mom, older sisters, and grandmothers, especially with my 1st child. She was petite (weighed 17 lbs at 1 year) and a very slow nurser. We battled thrush for months, but I was determined to fully breastfeed her, and she didn’t have anything but breastmilk until about 6 months, at which time we slowly introduced small amounts of foods and watered down juice. She never had a bottle–took her first juices from a sippy cup. She slowly weened herself, and at 16 months, when I was 6 months pregnant with her brother, she was down to once a day. One morning she tried, and I guess I was dried up, because she pulled off, waved at my breast, and said, “Bye bye, num num.” She never tried again. My boys, on the other hand, were large and fast eaters. They also didn’t eat or drink anything else til 6 months, but they weaned themselves at 10 months, even though I was trying hard to get them to keep nursing a few more months. (Sorry for all the nostalgic details…my kids are all teens now, and I’m in tears thinking of how fast the time has flown.) I had a lot of pressure from family members and church friends, etc. to give my kids water, supplemental formula, milk, cereal, juice, coke!!…mashed potatoes, etc. but I stuck by my guns, and my kids were very healthy and happy as they grew. Even now, they don’t get sick much, and they get over it quickly. I like to think the breastmilk played a big part in that. I know it did during those early years.

    Bottom line, each kid is different, each situation is different. What works for one doesn’t for another, and I know plenty of moms unable to breastfeed whose kids are fine too. I tried never to criticize their methods or offer unwanted advice unless asked. Unfortunately, the criticisms will always come, but YOU are the mother, and you are accountable only to God for the choices you make. Pay close attention to your kids, to your instincts, and to your Maker. Those 3 things will help you ensure you are doing your very best to be the best mom they could hope to have.

    As to your doctor…bravo for leaving. Picking up the records, etc. can be intimidating. I’ve also found numerous errors in mine the few times I’ve done that. I’ve long suspected my RA was triggered by Fifth’s Disease I had when one of my preschooler’s caught it. I had my first flare during that illness, swelling my knees, etc. hugely and sending me to a diagnostic clinic (before we knew we had Fifth’s). They shot me full of prednisone and theorized I was having some sort of allergic reation, but a couple days later, my son and I got the rash and his pediatrician diagnosed his Fifth’s. This happened years before my RA diagnosis, but I know my joint problems slowly started appearing after that episode.

    My my…I’m rambling. My prayers are with you, sweet sister!

    • Hi Sunny!

      So great to hear from you. I was just thinking about you the other day. Was wondering how you are doing. You were in terrible shape the last time I heard from you and it just broke my heart.

      Bravo to you for sticking by your guns with your babies! Mamas know what’s best for their children when they have their best interest at heart.

      So interesting that your RA symptoms began appearing after the Fifth’s diagnosis. I see my new rheumatologist regarding AP this coming Tuesday. I can hardly wait to meet him and find out what he has to say. I love second opinions! By the grace of God I weaned my little guy as of two days ago. I really never thought we could do it in time for my appointment. I am truly praising God. It was so emotional and I am tearing up just thinking about it. He is fourteen months old now and for the last fourteen months, I have been bound and determined to at least stick it out without med.s until he was a year old. He is blessed with incredible health and praise God he eats like a horse (just like his daddy. : )

      Thank you so very much for your prayers, Sunny. They mean everything. You are in mine and I hope you have been experiencing better days lately. I hope to report good things soon about my new doctor! Many blessings to you!

    • Hi Leslie!

      Great to hear from you! Thanks for checking on me. I stopped by your blog the other day and was so happy to read that you are doing well and have even ceased AP therapy. Praise God! So awesome. I have a new page at the top right titled “AP diary”. I started it for myself so I could keep track of progress with AP. It’s not pretty and posts are not well organized. It is basically stream of consciousness–and with the mention of bowel movements, who wants to announce it to the world, you know? : )

      I have actually seen slight improvements. Feet are slightly improved, wrist is improved and I can think clearly now. Yeah! I’m also experiencing pain and inflammation in areas of my body that never bothered me before beginning AP. The way i see it–AP is going after areas that were next in line to cause me trouble. One step forward and two steps back it seems. But any signs of progress are incredibly encouraging. Was really tough at the get go. Really rough…

      I started a thread on the road back’s site regarding the protocol I’m on and have received some wonderful feedback. Everyone at that site is so helpful and encouraging–just like my fellow bloggers and readers. : ) It’s hard to imagine going this completely alone.

      Thank you so much for the e-mail address. I’ve actually wanted to ask you for it on your blog, but didn’t want to put you on the spot.

      I’ll try to keep up with the AP diary so you can see how I’m progressing.

      Blessings to you, Leslie! Will be forever grateful to you for leading me to what I am hoping and believing will be the road back. : )

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