Health Update

For several months my pain has been manageable. Nothing has been out of control as far as swelling and I’m used to my other aches and pains. But lately, something has been creeping in. Testing just revealed that I am battling a parasite. To say I’m freaked out is a huge understatement. A parasite was discovered last year. I dropped raw milk out of paranoia and followed an herbal protocol that did the trick. I looked at my notes and it happened around this same time last year. Certain parasites can come back each year despite treatment and there are close to a 1,000 that can infest the human body. I play in dirt (compost) when I garden, wipe a kid’s behind everyday, clean a little box for two cats, handle raw meat, vegetables from my garden, farmer’s markets and the grocery store, I eat at restaurants, and I am a freak about washing hands. I could try to figure out where this critter came from and go crazy cleaning and generally freaking out. Or I could do what I am supposed to to get rid of it (going herbal route) and support my body the best way I can. I knew something was amiss though due to pain all over rapidly increasing over the past couple weeks. My boxing gloves are on.

A recent visit with my rheumatologist to go over current lab work revealed MCV and MCH still just above normal. My doctor said that since they are not too high above normal, despite being up there for years, and because the additional blood work he had done came back normal, he is not worried.

blood work 2014

He and I got to chatting and I said that sometimes I wonder what in the world I will feel like when I am sixty if my body is doing this kind of stuff at forty. He responded with a sympathetic “yes…” that trailed off. It was not what I was looking for. I wanted to hear hope. I wanted to hear, “Oh, you’ll be fine!” accompanied with a smile. Honestly, I wanted to hear it even if he didn’t think it was true. Is that bad? I have hope. I fight hard against seeing this as a downward spiral even though people all around me are getting worse. But on the other hand, I do appreciate my doctor’s honesty. No mention was made of my antibiotic protocol (now one year and four months into it), so I am continuing with it. I am scheduled to see my doctor and have blood work done again three months from my last appointment.

Another flaky, red patch has come about as well, and this time in a more prominent spot. Lovely.

psoriatic skin

Current state of my toes and nails affected by psoriatic arthritis. Thank God for nail polish.

psoriatic feet

Shoes I am getting rid of this week thanks to psoriatic arthritis. Can we please have a moment of silence to mourn.

high heels

I can still smile about it all and sport a pair of Naot heels when I want to. Thank God.

mirror

When I was at my chiropractor’s office yesterday, my four boys were waiting in an area outside the room. One was drawing, one had his eyes closed, and two were on electronic devices. I was sitting on the table in the room with my doctor with my back to the door that was open. I hadn’t noticed my four year old come in and sit down. I had just told my doctor when asked how I was doing that I was experiencing increased pain, blah, blah, blah.

And then I felt a little hand on my back rub up and down a couple times. I turned around to see my little guy. He looked at me and said, “your back hurts?” Oh, it broke my heart. I wanted to take my words back. I am attempting to make the best of the situation by embracing the fact that hardships help teach compassion. My little guy does not have touch at the top of his love language list, so it means all the more to me that he came over and put his hand on me out of compassion.

I find comfort in my pursuit to demonstrate joy to my children despite an uncooperative body.  Because dwelling on what a drag it is to deal with pain and be hyper conscious about food and products is not going to help produce fruit in anyone. Does anyone else struggle with how our children process what it means to have a parent that is not fully well?

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A Pain in the Neck!

So sorry for dropping off the face of the earth after Christmas. I’ve continued to check on my fellow bloggers, however, and each of you are never far from my prayers.

It’s important to me to record what has been going on with my health before my memories fade. The past couple months have been a bit of a ride. The pain I’ve dealt with in my neck for some time now, escalated to a level I could barely tolerate one night. In trying to sort out what is going on in that area, I’ve had multiple visits to my rheumatologist, chiropractor and an acupuncturist (a full blooded Chinese man, as my husband said). I’ve also had multiple visits with a neurosurgeon and two MRIs, with two more scheduled  for July. One of which is for my lower back. Not crazy about the fact that my wellness team is growing. But I’m so thankful that I have a team of outstanding professionals aiding me in my battle for my health.

As far as my AP experience, I am pharmaceutical free as of last Friday. Feels strange and a little scary. It is still weird to wake up in the morning and not have to take an antibiotic. Weird and wonderful. I decided to continue past the six month mark with my antibiotic protocol and was just shy of completing nine months (I loosely had a year in mind). But recently, I began to think about quitting one of the antibiotics (azithromycin). From day one it caused me to experience increased pain levels the morning after I took it. I could basically count on hurting every Tuesday and Friday. Initially, I interpreted this as a good thing based on the fact that with AP it usually gets worse before things get better. But being almost nine months in and still experiencing increased pain got me wondering if it was such a good thing still. I also began noticing a bit of stomach distress after taking my azithromycin. And if that wasn’t enough, I saw my rheumatologist last week and saw my latest labs and they show my liver showing its first signs of distress. That’s enough to cause me to pull the plug.

I’m at peace with the decision and now I’m holding my breath to see how my body responds. In the meantime, I am trying to be very diligent about taking my numerous supplements and nourishing my body with good food since I notice a decline in how I feel when I slack off a bit. I am also making sure to do all I can to repopulate my gut with healthy bacteria.

I came up with a year of AP in my mind after extensive research. Even though my rheumatologist thought we should call it quits after six months, I felt strongly about pushing past six months. I felt like more work needed to be done in my body. Thankfully, he agreed to let me continue with careful monitoring every six weeks. He has really been a blessing. But I couldn’t shake the nagging feeling lately that it was time to drop one of the med.s. When I asked my doctor about this he said that I would need to quit the rifampin as well because on its own, one can develop antibiotic resistance. He also said that my body could be having a bad reaction to the azithromycin and that is why there is increased pain. So, just like that, I’m done with them both.

I asked him about trying antibiotics again in the future if my body starts to get out of control again. He said that is definitely a possibility and we would probably go the minocycline route.

At this moment, I am so glad I tried the AP route and would do it all over again. Something tells me I may have to. But hopefully, it won’t be for a long time, if ever. I am trying to stay focused and positive in my mind. I want my subconscious thoughts to be uplifting.

It helps to look back over my AP diary and my previous posts and remember how much pain I was in because it gives me a better perspective of the progress I’ve made. The pain I feel now in my joints feels like residual pain–tenderness left over from being attacked and inflamed. My feet still have tender spots, as does my right ankle. But I walk barefoot all over my house now and outside without any problem. Praise the Lord! Even if all of this is fleeting, it is fabulous right now.

It has also been several months now since a joint has swelled and I don’t wake up with morning stiffness (just achy joints). My progress has held steady in terms of my hands and feet, wrist and ankle. My neck and back are a different story. I wish I knew if they were separate issues or somehow related to my condition because they have both become worse and extremely painful at times.

As far as my pain in the neck–the night of January 30 almost sent me to the ER. I was struck with intense, mind numbing pain that evening in my neck and upper back. It was awful. I’ve never experienced anything like it and pray I never do again. I didn’t know what to do. It felt like lightening shooting down my spine. But the last place I wanted to end up was the ER in the middle of the night.

There was a lot of sobbing and cursing involved that evening. I tried to find relief first with an anti-inflammatory and a pain killer. But if offered no relief. In fact, it felt as if the pain level actually increased. I was afraid to move it hurt so much. I soon called the pharmacy to find out if I could take a third drug–a muscle relaxer. The pharmacist said they will sometimes do that in the ER and if my combo didn’t work–to go to the ER. It was hard to breath without lightening pain in my neck and upper back. I could not get in to any position that offered even a bit of relief.

It was only by the grace of God that I made it through the night. I was able to remain calm and tried to focus on my breathing and prayer, and at some point I actually fell asleep.

The following morning (and into the following week) every step or turn brought a strong shot of lightening pain. I could barely move without getting jolted. When I walked, I also heard an audible knocking sound coming from my neck. Completely creeped me out. The pain was different from anything I’ve ever experienced before. It felt electric and more intense than anything I’ve ever known.

I called my mom who lives roughly three hours away the next day for help. Praise God she has angel wings. She came and went multiple times over the coming weeks. I lost track of how many visits she made to help me care for my family. Her help, along with my sweet husband was priceless, because suddenly I couldn’t drive or do much of anything without the electric jolt zapping me.

The next call the following morning was to my rheumatologist to request an MRI. I’ve had x-rays taken of my neck recently and they showed nothing. It was time to get a closer look. When I saw my rheumatologist a couple weeks prior to the incident for a follow-up, I was in a great deal of pain in my neck area. He prescribed an anti-inflammatory, a muscle relaxer and a soft collar and said that the pain was probably not related to my disease.

After calling him to request the MRI, he asked to see me again first. Praise God, his office staff got me in the very next day. At this appointment he said that my pain might be related to my disease after all. He asked if I wanted a shot in the arm for pain and inflammation. Yes, please. I was given a shot of toradol which caused my arm to hurt like crazy all the way home, but worked like a miracle for 15 hours. He also offered me a prescription for a steroid dose pack (which I declined knowing that it would end up seriously ticking off my joints) and said he could give me a shot of Enbrel on the way out if I wanted. In retrospect, it is slightly alarming to me how trigger happy he was with a biologic. But it reminds me of how much pain I must have presented in. I know he was just trying to help in any way he could.

After leaving, I read his notes on the order for the MRI. They read–seronegative RA or possibly ankylosing spondylitis. He never made mention of the second disease to me during my appointment. I struggled with the possibility, but didn’t want to give in to the idea. Somehow it didn’t fit, yet somehow it easily could.

What is interesting to me is that I went to my PCP roughly three and a half years ago for crazy neck pain before ever seeing a rheumatologist for the first time. He referred me to physical therapy and said it was nothing to be concerned about. He never ordered x-rays or suggested anything else. When I saw the physical therapist, he said that based on the way I presented I should give up the kickboxing and running I was doing permanently. What?! I remember this news clearly because it broke my heart. I loved kickboxing. I didn’t understand. At the time I was healthy, active and fit. Why did I suddenly have to give up something I loved? He recommended PT a couple times a week for a couple months. I went diligently and found relief. But there was never any explanation for why my neck might be painful enough to send me to see a doctor. The only thing I could attribute it to was kickboxing.

I had a follow up appointment with my rheumatologist to get my MRI results. He said there was a lot written for C5-C7, which is never good. My heart sank. But how bad could it be I thought? The radiologist’s report said there was a very large bulging disc pressing on my spinal cord and depressing the sac. My rheumatologist said that based on the report, it was very likely that I would need surgery and referred me to a neurosurgeon that he described as conservative. He said that out of the hundred or so patients he had sent his way, roughly ten had needed surgery.

I have to tell you that after years of being the girl that doesn’t show up on paper, I was relieved to finally show up on film–and in a big way. My doctor said he couldn’t believe I’d been living with this level of pain and offered me whatever I needed in terms of relief. I’ll never forget the way he looked at me after reading the radiologist’s report.

February 2, 2011

They got me in to see the neurosurgeon the very next day. When we got to the office, the waiting room was full–full of people that looked like they were hurting. My husband and I waited two and a half hours to see the doctor and I was the last patient to be seen.

The neurosurgeon finally came in, apologized for the delay and said he could help me. He said my situation was more extreme than most, but an open and shut case for him basically. He also said I was not in danger of paralysis in the meantime. All I needed to hear. Surgery was definitely the order of the day and he said he recommended that he perform it as soon as I would allow him to.

It was great to get a good look at my films for the first time. Anyone could see the disc bulging and pressing on the spinal cord. It was a crazy thing to see. He said there was some damage to the cord and asked if I was experiencing any numbness or tingling in my arms or legs. I told him that my hands had been falling asleep at night for quite some time. In fact, I mentioned this to my PCP when I saw him about my neck years ago and he said it was probably due to me having them in positions that caused this. Guess not.

The neurosurgeon said I would need an anterior cervical discectomy and fusion. Huh? The way I heard him explain this to me was, “Cut you open in the front above your collar bone, remove your entire disc, insert a disc composed of a dead person’s bones encased in an artificial plastic material, blah, blah, titanium plates and screws in your spine, blah, no neck movement for six weeks, no driving, lifting or bending for at least two, collar worn for six weeks.” Eek.

The neurosurgeon then led my husband and I down the hall to his nurses’s office and said if I chose, I could schedule the surgery with her. For some reason, my gut said to simply book it. For some reason, thoughts of a second opinion and further research weren’t a part of the equation. I just felt the need to move forward with the surgery so I could get on with healing.

In retrospect, I think there was a part of me that was thinking–there is actually something wrong with me that I am being told can be fixed. I’m so used to hearing–this is something you will have to deal with for the rest of your life. There is no cure and you will have to take drugs to attempt to manage it for the rest of your life as well. So, a prognosis for pain relief with surgery was in some strange and tiny way–a relief.

I can’t help but wonder if  the problem with my neck is holding up greater progress with my hands and feet. It is certainly possible since the area of my spine affected is connected to my hands and feet. What if alleviating the problem with my neck takes a load off my hands and feet and I am able to cross a few more hurdles toward better health? A girl can dream, right?

I scheduled the surgery for their first opening and left with my head spinning, wondering how in the world my family would function with me out for two to six weeks. No neck movement for six weeks and zero activity for two? How was that going to be possible? I’ve never not done anything for two weeks. I felt overwhelmed.

I wrote what follows in February after I scheduled the surgery and stuck it in my drafts folder. (I have since cancelled the surgery.)

It’s very difficult to wrap my mind around what is to come. Unlike my last c-section (my 4th), which at times brought on fearful feelings before it occurred, I feel almost completely removed from what is about to happen. Just focused on getting through surgery, being the best patient I can be and moving on to recovery.

Does this mean that my neck issue is related to my disease or is it a separate issue? Neurosurgeon thinks they are separate issues, but my rheumatologist seems to be on the fence.

My oldest son brought home cards written by all of his classmates. Just seeing the stack of cards with my name on it made me cry. I realized in that moment how concerned my son was since he talked about it with his teacher and his class. I couldn’t even open the cards for a couple of days. I was too overwhelmed. But when I did, God’s power and love was unleashed through those kids.

There are a lot of people praying for me. When I stop to think about all of the people praying for me, I can’t help but cry. It just humbles you. I don’t always like asking for prayer. Maybe because it sometimes means there is a bit of a crisis going on. But I believe in the power of prayer with all my heart. And somehow, I have been able to get by this week without my mom being here. The pain is significantly less. That’s a praise report if you ask me and nothing short of a miracle considering how much pain I’ve experienced the past couple weeks.

(The following was written present day….)

Then I began to have second thoughts about the surgery. It led me to research it more extensively and seek a second neurosurgeon’s opinion (he looked at my MRI films and offered epidural pain relief, pain killers and said if that didn’t help that I should have an anterior cervical discectomy performed). I also made another appointment with the neurosurgeon scheduled to do my surgery. I had more questions now and more concerns.

At this point, I was managing to function at a decent level, but was not lifting my little guy or anything else heavy for that matter, and was taking it as easy as possible. I continued to get weekly adjustments (very gently) from my chiropractor and saw an acupuncturist. The pain was now more tolerable and my constantly interrupted sleep (due to pain) was something I accepted as par for the course.

My neurosurgeon was very understanding at the follow up appointment and said if I wanted to wait on surgery, that he wanted to have another MRI done in four to five weeks to make sure I wasn’t in any danger. I left feeling extremely grateful that I would get another look and thought–OK, time to work on healing. I wanted to see improvement in my follow up films. I remember praying a few days later, Lord, please allow me to see your work through my MRI films. I knew a lot of people were praying and I wanted to show them something awesome. I felt prepared for either situation though.

It makes me cry now thinking about my prayer because here is my second MRI. Huge improvement.

March 9, 2011

I have to show them side by side. Here is first one again. Ouch.

February 2, 2011

My neurosurgeon was amazed with my follow up MRI. He said he has never seen an improvement as major as mine happen so quickly. He was taking pictures of the first films I brought with me again with his phone to show his colleagues the improvement. Take all the pictures you want I thought. 🙂 He said that he had to eat his words in a sense because now my surgery was more optional than critical. But he still highly recommends that I have it done based on my age, condition, family demands, etc. He said that if I were his sister or his wife he would say, “Baby, you should really have this done.” He also said (without knowing anything about my faith) that when he goes before God, he would be at peace saying he had recommended I have this done. Heavy sigh….

When I think about the fact that my neck went crazy at the end of January and we are now into May, I am stunned. I know we all say time flies, but I feel as if time has warped. More so than ever it seems.

It is also very hard to believe that my oldest is completing his first year of middle school at a private school with a butt kicking curriculum in just a few weeks and two of my other boys will be through another whole school year. This has by far been the fastest a school year has ever flown by. Maybe because my husband took over driving my boys to school each morning a few months ago. Praise the Lord. I don’t know. But something has truly impacted my sense of time.

My youngest is also turning two this month. Unbelievable. It seems like just yesterday that we had a big monkey birthday for him and a house full of children and adults. This year, I am planning on an intimate family gathering.

And now by the incredible and amazing grace of our Lord Jesus Christ, my husband and I are going through the process of building a home. Oh, thank you, Jesus. It came out of left field and I am left speechless by the gift. I am still in awe. I’m sure this has added to the time warp. Our new home is going to so beautiful and for me–something I really never imagined in my wildest dreams would happen at this point in my life. Sometimes it is truly too much to process and I break down and cry.

Our first new home together is said to be done toward the end of June. Dear Jesus, help me get my entire house in order and packed without feeling incredibly overwhelmed. Help me to manage the needs of my body with the needs of my family.

I am so thankful to be moving out of the home we are in now. Our home is beautiful, has woods behind us resulting in privacy, and was built by my parents. We are minutes away from my boys’ school and right across the highway from our church. It has been such a blessing to live here in our home in this location.

But this is also the home that my ex-husband lived in with me. If walls could talk….

I think it will be incredibly therapeutic to start a new chapter in our new home. I don’t consciously think about the evil that took place in our current home. But just like my residual joint pain, I think there is a residual effect that we might not even fully understand the ramifications of physically that can take place if we are surrounded by an environment that was once destructive physically, mentally and spiritually.

My husband and I are the first to buy a lot on the street we are moving to. All of the neighbors will be new and I have been praying about each one. I can’t wait to meet them. I do know that our neighbor to the left has five kids and they are a blended family like our own. I think that’s pretty neat. Our neighbor to the right is in Virginia with her two boys while their home is being built and her husband is in Afghanistan. I plan to take pictures of their home process for them. Just feel the urge to do so.

Since I have decided for now to not have surgery, I have to know what my limits are. When I start to feel less pain and have increased mobility in my neck and back, I push my limits (i.e. lifting, sweeping, bending, stooping) just a bit more to see what my new normal is and to attempt to determine if this is a doable normal for me. Doable in the sense that I can carry on, get things done and not limp along pathetically relying on others all the time.  It has required getting used to a new level of pain, a new level of limitations. It’s amazing what we are capable of accepting as our new normal. And I have to accept it for simply what it is or I will turn into a resentful and unpleasant grump.

My other option is to give surgery a shot, to replace my God given disc with a mix of a dead person’s and an artificial material, a few long screws and a plate–which gives me the creeps. And quite honestly, I think that surgery is a crap shoot because it could bring relief, or it could even bring more pain if I don’t respond well to the procedure.

Of course, each time my neck and back flare up, I contemplate surgery because sometimes my new normal is pretty crummy. But thankfully, in the midst of this my energy level is good, my mind feels clear and my other joints feel the best they have felt in years.

Praying this finds you well. So many of you are on my heart and in my prayers.

He Speaks.

The following was in my inbox this morning. I can’t help but share it. It speaks for itself.

Praying for all of my brothers and sisters. You are all on my heart.

From Max Lucado: 

God Speaks

“Speak, Lord.  I am your servant and I am listening.”  I Samuel 3:9

We expect God to speak through peace, but sometimes he speaks through pain…

We think we hear him in the sunrise, but he is also heard in the darkness.

We listen for him in triumph, but he speaks even more distinctly through tragedy.

Out With the Old, In With the New!

I am SO thankful that I have a new rheumatologist and sometimes ask myself why in the world I even debated sticking with my old one. It must have been the brain fog from my illness causing the lack of clarity. Thank God I decided to embark on an antibiotic protocol. Because it led me to seek out a new rheumatologist–one experienced and willing to prescribe antibiotics for my disease. Let’s compare and contrast my doctors, shall we?

Old doctor never suggested supplements of ANY kind to naturally support my misbehaving body. He used to make me feel like an all natural freak for taking anything that didn’t require a prescription. New doc has mentioned at all three of the appointments I’ve had with him to be sure and supplement with fish oil. Lovin’ this guy. Old doc told me at my first appointment that at least these days, compared to the eighties, there are drugs keeping people out of wheel chairs. New doc told me at my first appointment that he was going to do everything he could to help me feel better. Really lovin’ this guy. Old doc use to smirk whenever I told him that I was trying to stay active as best I could and was also working with a Doctor of Naturopathy. New doc said that I’m doing all the right things. Old doctor never met with me for more than fifteen minutes and never did a complete exam on me. Was he nervous about touching me, or what? New doc spent almost an hour with me at my first appointment and did a complete exam. This is the way it should be! Old doc had a nurse that was just plain rude. Despite the fact that I usually felt like junk when I went in for my appointments and did not enjoy being there, I smiled and made eye contact was down right pleasant. Response–none. She would barely crack a smile, never gave me my vitals (always had to ask if I had a pulse!) and did not appreciate my attempts at friendliness. New doc’s nurse is a pure delight. She opens the door and calls your name with a smile. She is pleasant and asks me how I am doing and engages in conversation with me. After checking my blood pressure at my last appointment, she told me my numbers were low and said I must be cold. And here’s the best part–she reached for something in the cupboard and handed me a cozy blanket. Love her! I could go on. But you get the idea. Out with the old, in the with the new!

When I met with my new rheumatologist I brought my records from my old doc–errors and all. I didn’t tell him why I left my old rheumatologist, but told him up front that I was interested in trying an antibiotic protocol. I asked him if he had read Dr. Brown’s book The Road Back (found within the book The New Arthritis Breakthrough). He said that he had not. Definitely not the answer I was looking for. However, I decided that if he was willing to put me on an antibiotic protocol, I was willing to trust his plan of attack. I had a peace about it–a first for me with a doctor.

By the sheer grace of God, I weaned my little guy just days before my appointment. When I set out to do this and got knee deep into the process, I really, truly did not think it would happen in time for my first appointment. And then, it did. And baby and I survived. And he still loves me all the same. The timing still amazes me. So, I was ready and able for the first time in over a year to start on med.s.

The day after I began antibiotics (rifampin and azithromycin–almost two months ago), I knew that something was seriously at work. Can you say pain?! According to many of those who have gone through AP therapy and have come out successfully on the other side, this is a sign that the antibiotics are doing what they are supposed to. And that is, attacking the mycoplasmas that have taken up camp in your body and caused so much damage to occur. Reading testimonials on the Road Back Foundation and connecting with others on their message board has been extremely encouraging. What an outstanding group of people I have encountered on that site. If you have questions, concerns, fears, etc., people on the board are quick to offer encouragement and insight.

The last two months of my trip, on what I am hoping and praying will be the road back, have been slightly scenic at best and rocky four wheelin’ territory at worst. I’ll spare you the gory details here, but if you want to read more you can here. I will say that I have seen some progress and have also experienced setbacks. But any progress is glorious. Glorious, I say! I work out in my home with a close friend that is a personal trainer every week. She knows my limitations probably better than anyone. Before my body started misbehaving we worked out together in a kick boxing class at a karate school a few days a week. So, she also knows what I am capable of and knows that I will push myself past the limit (pre-disease) to get in an awesome, butt kicking workout. She has seen me lose the ability to bend my left wrist and put any pressure on it to do even one push-up. But I can do push-ups now! Can you say awesome? And I can do them straight out of bed in the morning. No morning stiffness. I’ve also experienced days that have allowed me to get around a lot better on my feet. Still hurt, oh yes, but I can cover more ground with less pain and inflammation. And something remarkable occurred after a few weeks on antibiotics. I felt like I got my brain back. I can think clearly now. I can focus on a task and see it through. I was at a point before where I struggled terribly to follow a recipe. I lost my train of thought in conversations all the time. I felt like an idiot! And I’m no dummy. I feel like a switch has been flipped and I’m back. Feels incredible! I am also able to touch a finger to my palm that I never thought would be able to bend completely ever again. But there are also days that have been simply awful due to the increases in pain and swelling. I just want to cry, and do. I hurt all over, I get grumpy and tired of putting on a happy face and looking like everything is o.k.–because it isn’t! I doubt the approach, I feel distant from God and I get irritated with every runner I see bouncing along the road. These feelings don’t usually last very long, but do rear their ugly head from time to time when the pain rears the other ugly head.

Days like this force me to humble myself and remind myself yet AGAIN that what I am struggling with is not just about me. It’s just too easy to bust out the party hats and streamers and throw myself a pity party every now and then. This morning I had to ask myself if I’ve grown much lately as a Christian in light of my illness. Or have I become stagnant? Because He never promised that being made into His likeness would be a walk in the park. And I should be pretty excited that he chose me to confront this pain head on. His word promises that He will never give us more than we can handle and He is refining us like a precious metal for a beautiful future with Him. Despite what I know He has said in His Word and what He has promised–I know that I have a lot of spiritual growing up still to do.

And now I must tell you that I have a new diagnosis. So long seronegative RA. Say hello to her ugly step sister that tries to look just like her. I made the discovery just recently and my rheumatologist confirmed it at my last appointment in light of a new symptom that I have been–uh, um, blessed with shall I say?  More to follow soon, I promise. I have a post in the works with some lovely photos.

John 14:27 (NLT)

“I am leaving you with a gift–peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid.”

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!