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.

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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.

Needless to say, I didn’t sleep well the night of my discovery. I wanted to wake up my husband and say, “Baby, I know what it is now!” 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.”

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.”