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?

Sometimes, You Have to Ask

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

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

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

Here are my current lab results from 10/2013 if you are interested:

Image

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

Here’s a tip for anyone coming up on a birthday. Don’t consult with Dr. Google regarding anything about your health until waaaayyyy after your birthday! Note to self. I couldn’t help myself and looked for information about enlarged red blood cells. I’m not going to even write about some of the things I read about. I remember seeing the MCV number high a long time ago on my lab results in addition to MCH, but I recall my doctor not seeming concerned. I dug through my copies of blood work going back three years. The number has been up there for the past three years for both MCV and MCH. Interesting to me that it has my doctors attention now.

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

lab results 10/2013

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

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

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

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

Go Doctor Oz and thank you for spreading the word!

And this:

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

She might as well be me talking!

I also searched the list of abstracts presented recently at the American College of Rheumatology Annual Meeting in San Diego in hopes that this treatment is being investigated further. Unfortunately, not really. To me, it’s heart breaking. I found numerous studies involving biologic drugs, however. I found the following chart in one of the abstracts. The chart displays the average copay for drugs used for RA under Medicare–which is $250-$650 for a biologic. Plain crazy. I scrolled down and found minocycline–$7. So, what are the chances of pharmaceutical companies funding research studying long-term antibiotic protocols and their role in certain autoimmune diseases? I’m thinking next to none because they stand nothing to gain! Sad.

Table.   Coverage for Rheumatoid Arthritis Drugs in U.S. Medicare Part D Plans.

Drug

 

Plans covering drug

(%)

 

Plans covering drug without prior authorization

(%)

 

Plans Charging Percent

Co-insurance

(%)

 

Mean

Co-insurance

(%)

 

Average Copay

Mean (SD)

($)

 

Biologic
Abatacept

54

 

4

 

100

 

30.1

 

601 (22)

 

Adalimumab

100

 

7

 

100

 

30.0

 

583 (12)

 

Anakinra

40

 

4

 

100

 

29.9

 

517 (19)

 

Certolizumab

59

 

1

 

100

 

29.6

 

650 (16)

 

Etanercept

100

 

7

 

100

 

30.0

 

547 (11)

 

Golimumab

42

 

1

 

100

 

29.6

 

580 (17)

 

Infliximab

100

 

7

 

100

 

30.0

 

255 (5)

 

Rituximab

100

 

8

 

87

 

29.5

 

611 (25)

 

Tocilizumab

40

 

1

 

99

 

29.7

 

335 (14)

 

.
At least 1 biologic DMARD

100

 

9

 

87

 

30.3

 

275*

 

.
Non-biologic
Azathioprine

100

 

34

 

10

 

18.1

 

7 (1)

 

Cuprimine

60

 

60

 

59

 

30.6

 

83 (6)

 

Cyclophosphamide

94

 

2

 

20

 

27.4

 

32 (3)

 

Cyclosporine

100

 

12

 

22

 

25.1

 

34 (2)

 

Hydroxychloroquine

100

 

100

 

10

 

18.1

 

5 (1)

 

Leflunomide

100

 

100

 

13

 

19.3

 

11 (1)

 

Methotrexate

100

 

85

 

13

 

19.8

 

5 (1)

 

Minocycline

100

 

94

 

10

 

18.1

 

7 (1)

 

Sulfasalazine

100

 

100

 

10

 

18.1

 

5 (1)

 

.
At least 1 non-biologic DMARD

100

 

100

 

11

 

18.2

 

4*

 

.*mean copay of least expensive drug covered

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

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

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

The following is taken from:

British Journal of Pharmacology © 2013 The British Pharmacological Society.

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

Found this on minocycline and ovarian cancer:

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

Unfortunately, there is a great deal of information out there that our doctors are not telling us about. I’ve never had a medical doctor talk to me about what I eat and it’s role in disease. I’ve never had a medical doctor talk to me about the importance of managing stress and it’s impact on my body. And antibiotics as a treatment option are not being offered as readily as biologics, if even at all. Take the patient I spoke with in the waiting room for example. We have the same rheumatologist and he has never heard of antibiotics as a possibility. And he has been dealing with wonky joint pain and inflammation for a few years now. Antibiotics have certainly not been the end all be all for me. And they come with their own scary list of side effects. But my journey with them has changed my life for the better and it’s important to me to share that in the hopes it could help someone else.

My Life in the Before and After

I love watching design shows. Love. Can’t get enough. I really love seeing a room transformed into something that brings the homeowners joy and functions well for them. I’m having the time of my life making our own house a home. It is something that gives me great pleasure (thank you very much, disease, you can’t take that away). It is good medicine to love your surroundings or at least feel at peace in them, if you ask me.

 And who doesn’t love a good before and after?

Unfortunately, with these crummy autoimmune diseases spawning all over the place, the before and afters aren’t always so pretty. I gathered a few disease related before and afters of my own to share. Sorry, have to show the toes again. If I am willing to once again throw my nasty toes up on the internet, you know there is love involved. I get more Google search hits for things toe related than anything else.

BEFORE

(Pre-antibiotic protocol)

IMG_0006

AFTER

(Five months into the protocol)

IMG_1931

BEFORE

neck

AFTER (Five weeks later)

(Large number of people praying for me, acupuncture, chiropractic adjustments, limited activity)

second MRI

BEFORE

(Pre-disease)

IMG_1107

AFTER

(The closest I can get to a sexy heel these days without my feet screaming, “Mercy!”)

IMG_1111

BEFORE

(My diet pre-disease consisted of artificial colors, artificial flavors, sugar, dairy, grains)

M&Mgroup

AFTER

(Post-disease I avoid all of the above as often as possible because it can make you sick!)

BEFORE

(View from my back porch and fog that causes me crazy pain)

IMG_1200 AFTER

(Relief…)

IMG_3866

What brings me joy amidst having a ridiculous disease.

BEFORE

IMG_4151

AFTER

(I still want to paint the ceiling. My neck doesn’t though.) 🙂

IMG_1587

And just for fun, because I have no shame now that you’ve seen my ugly feet. 🙂

BEFORE

IMG_1052

AFTER

(Someone at the mall did my make-up in this photo and I can not seem to reproduce the same look for the life of me. Darn those toxic, but beautifying products that I chose not to purchase!)

IMG_3846

Praying this finds all of you feeling the best you possibly can in the after!

AP Diary Part Two

I have enjoyed close to a year and five months of being pharmaceutical free. Glorious. Joy beyond words. I got a great part of my life back. During the nine months on my antibiotic protocol approach prior to this, I experienced a return of function to joints that were frozen, extremely painful and swollen. My body responded exactly as those that had gone before me with the approach said it would. It got a lot worse before it got better. New joints swelled, my butt got kicked with fatigue and my mind was extremely cloudy. It was a very rough ride. But slowly, ever so subtly, swelling disappeared, I regained movement in the frozen joints and my mind became sharp and clear again. It was really amazing and I am glad I took the leap with this approach. If I hadn’t, this would have never gotten done. 🙂

Bacteria is a resilient monster. It dodges and ducks and morphs in ways that blow my mind. So, I knew the possibility of another long round with antibiotics could be a part of my future. I hoped not. Of course. But always knew I might have to keep the battle going.

Enter my baby toe…

Image

I tried to ignore it. But squeezing it into a shoe is an uncomfortable reminder that something is having it’s way with you. Then there was the arrival of a double ear infection and a sore throat. A sign to me that the bacteria was back at work. I was plagued with frequent ear infections right up until my long run with the antibiotics and had not experienced one since I began the protocol. So the painful arrival of a double one with the throat along for the ride got my attention. What followed was a two week long headache. I’ve never experienced anything like it. I woke up with it and went to bed with it.

I had a follow up with my rheumatologist this week. I told him about the recent activity–right ankle is feeling bursts of fire, but not swollen, base of spine is acting up again and shooting pain down my rear, wrist and thumb on left hand, and let’s not forget my baby toe. They all started a party around the same time. I still function pretty fabulously and I can tolerate the pain. Praise God. But I had a nagging feeling, I better bring in the big guns.

My doctor is used to me not asking for drugs. I just check in with him every three months and have blood work done, which is normal across the board as of three months ago. Anxious to get this week’s results back. But this time I asked him what his thoughts were about me giving antibiotics another go. There was no hesitation and before I knew it I was walking out with a prescription. It took a couple of days before I filled the prescription. I read over my AP diary, prayed and spent time in the Word of God. I also had to work through my panic over trying an antibiotic in the tetracycline family this time–minocycline–since I had a severe allergic reaction to tetracycline itself in seventh grade. I will never forget shivering under an electric blanket on high due to a high fever and being covered head to toe in a rash that itched to kingdom come.

I just took my second antibiotic and hope to again keep up with how my body responds in my AP diary. It was really helpful to be able to read through again and hopefully it will be helpful for anyone that wants to follow this approach. There seems to be a great deal of skepticism among autoimmune bloggers over this approach. And to be very honest, my feelings were hurt by a fellow blogger that posted this:

“With RA, some of the ”cures” most frequently recommended by people with no medical credentials are”

Gin-soaked raisins
Antibiotic protocol (Road Back)
Marshall protocol
Treatment for Chronic Lyme Disease
Cider Vinegar
Honey
Copper Bracelets
Bee Stings
Certo Pectin
Magnets
Diet

Did you catch it? My bacteria butt kicking approach that gave me back the function of my body got listed with honey and magnets. Ouch. It hurt and saddened me that a large readership might be turned off to even investigating the approach. This approach is, however, recommended by several doctor with medical credentials.

And in case you are interested…

The following is taken from a lecture by the rheumatologist who pioneered antibiotic therapy, the late Thomas McPherson Brown, M.D., spoken at the Huntsville, Alabama Family Practice Center.

Tips on Starting Antibiotic Therapy*

Hypersensitivity/autoimmune states are infectious in origin; thus, suppres-sion of the antigenic source causing the patient’s hypersensitivity state is the focus and framework for treatment.

The treatment goal is direct suppression of antigen (in early disease) or suppression of antigen mimicry through tying up receptor sites (late disease / auto-immunity) with a dose of medication low enough to avoid exacerbation of the hypersensitivity state.

* A probing patient history may reveal a triggering event such as an injury, chemical sensitivity or illness. Finding such a trigger may provide information on a contributing antigenic source. Testing for organisms can be helpful in confirming the involvement of a pathogen in the disease process.

* Apparently unrelated infections such as dental problems and sinus infection complicate the antigen pool and compromise an already stressed immune system.

A second infection can be a cofactor in the disease and an additional source of antigen: e.g. strep, chlamydia, candida, or chronic sinus or bladder infections. Treat focal infections first or concurrently.

A washout period of several weeks to a month prior to beginning antibiotic therapy is preferable; however not all patients will be able to tolerate such a step. In those who opt for the washout, low dose prednisone may be used temporarily to help control inflammation and pain medications can help keep pain to a manageable level.

Pursue treatment long enough (in early disease) to eventually suppress antigen formation or to interrupt chronic process (in late disease) to allow the host’s immune system to dominate.

* Long term disease may require lifetime treatment.

* Treatment histories of >20-30 years currently exist with disease control and no negative side effects from the antibiotics

* Patients need to maintain a healthy life style with balanced meals, exercise, active stress reduction and adequate sleep in order to support the immune system.

* Vitamins and supplements which strengthen the immune system are helpful.

Daily NSAIDs are necessary to suppress inflammation and increase the effectiveness of the antibiotic by allowing it to penetrate the inflammatory barrier.

Acidophilus supplements will help maintain a normal bowel flora and counter an overgrowth of candida.

* To strengthen muscles and increase joint stability, rehabilitation should begin as soon as the disease shows signs of quieting, also decreasing the chances of joint disfigurement.Massage may be begun immediately to relieve trigger points in soft tissue adjacent to irritated joints, to retard contractures and provide pain relief.

Treatment response is generally slow and subtle although some patients see an immediate lessening of pain. Six months to a year is not an unusual time required for significant improvement.

It is not unusual to see a preliminary worsening (Herxheimer reaction) when antibiotics are begun or when treat-ment adjustments are made. The severity of the reaction is usually dose related. Although uncomfortable, this reaction is a sign the offending organism is being reached and is a good sign.

Laboratory parameters can improve before clinical improvement is seen or vice versa. Treatment of an infection with antibiotic therapy is supported by fall a in RF and acute phase reactants.

Depression, memory loss and mood swings are symptoms of the disease, possibly due to accumulation of antigen.

Some generics are ineffective; brand names are more costly but strongly recommended. Adding d.a.w. to the prescription will insure the patient receives the brand name of the drug.

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.