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.

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.”

Good Riddance

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

To Be Saved By Grace

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

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

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

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

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

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

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

Praying for my sisters and brothers.

Why God Why?

The receptionist at my rheumatologist’s office just called to tell me that she made a mistake when she scheduled my appointment for Monday, June 14 with the nice Dr. since I am a patient of Dr. Blank.  (DEEP BREATH…)  She said it is their office policy to not allow patients to switch Dr.s.  I said, “So even though it is my choice as a patient to chose my Dr., because of your office policy I can’t choose. ”  I told her that when I saw the nice Dr. when he filled in for Dr. Blank, I told him that I wanted him to be my Dr. and he said it would be tricky (– not impossible).  I am so upset about this. So, now I don’t have an appointment. When she asked me if I wanted an appointment with Dr. Blank the same day, I told her no. I also told her to tell them that I might be getting my records.

I hate conflict.  I am not the type to get in someone’s face and argue or yell.  I mean, don’t provoke me, but generally speaking, I try to avoid conflict.  I feel stress as a result of this incident involving the Dr. world.  Needless to say, I have already begun my search online for other rheumatologists as possibilities.  But if I have to start from scratch with another rheumatologist, I will have to wait three or four times as long to get an appointment since I will be a new patient.  But I might also find a great Dr. that values what I have been doing to support my immune system naturally and understands the importance of breastfeeding.  Oh wait–I already did find that Dr.  But I can’t get an appointment with him because of an office policy!

Up to Breath

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

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

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

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

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