Diary Update

If there is even a single soul following my second adventure with an antibiotic protocol, I apologize for not updating my AP diary 2 in the past six months. When crazy pain rolled in during month two, I unfortunately avoided my diary like the plague. Updating it was the last thing I wanted to do at the end of the day because thinking about the state of my body only sucked the joy right out of me. And once you let something go, it’s all too easy to continue on that path.

I am now seven months into my second go with this approach and updated my diary May 16 if you want to know more. Things have unfortunately taken a turn for the worse in the past few weeks and I finally made myself write it all down. I have a follow-up appointment with my rheumatologist next week.

May you be blessed today!

 

No More Yummy Easter Bunny

A few things. First off, I freaked out last night when I discovered a YouTube video containing a commercial at the bottom of my latest post. AAAKK!!! I have since learned that WordPress has chosen to place ads on your blog unless you give them $30 a year. I am now faced with the decision of whether I want ads that advertise Lord only knows what representing me on my blog, or cough up $30. I had no intention of ever advertising on this blog. I also had no intention of ever paying money to maintain this blog. Decisions. Until then, please know that I am not happy about the ads recently thrown up on my blog.

Secondly, when did Easter in America become about poisoning our children and glorifying a bunny? When my children were gifted candy recently by someone other than me, I cringed because of what they were going to consume in the name of Easter and our risen King.

Say hello to the infamous peep. I ate them as a kid and they were delicious. Now I know what is in them and the joy is gone.

They look sweet and innocent enough until you flip the package over. One might even think, “Gluten free–they must be OK.” And how could anything made in a city named Bethlehem be bad?

But I think the ingredients speak for themselves, don’t they? Please tell me they do. Please tell me that you understand the dangers of corn syrup and synthetic dyes and chemical preservatives? Please.

I realized something else about the Easter candy as I was photographing it. I noticed that there was no mention of Easter. The box just said, “Happy”. That’s it. What happened to Happy Easter? Merry Christmas has gone to the wayside for Happy Holidays. Have we lost Easter too?

I dare you to read the ingredients. But please know first that he was “Proudly made in the U.S.A. since 1948″.

Maybe it should read, “Recklessly causing unexplained, incurable disease and allergy triggers since 1948″. Just saying.

Do I need to get into the horrors of hydrogenated vegetable oil? Do I? I am not even going to get into the highlighted words right now. But I wanted to point out something on the label that I have never seen before: “U.S. Certified Colors”. Guess how many colors in this bunny? Six. Gag. And it says U.S. Certified because some are banned in other countries (that acknowledge the dangers). Banned, people!

This is Red #40:

disodium 6-hydroxy-5-((2-methoxy-5-methyl-4-sulfophenyl)azo)-2-naphthalenesulfonate (source)

Still yummy? You might also know it as petroleum. Yuck. Ignorance was sweet bliss. But knowledge is power, right?

Red 3, Red 40, Yellow 5, and Yellow 6, have been proven to be tainted with cancer-causing contaminants and cause a host of physical and behavioral problems. (source)

Personally, after spending over $400 dollars on a blood test that my insurance wouldn’t pay for, I’ve learned that out of the handful of things my immune system does not like–dyes make the list–red and yellow specifically. You think I don’t want to keep it out of my children like a crazy lady now? It kills me that they have access to it at school. But it doesn’t matter. Because it is everywhere in our society and we are giving it as gifts at all of the holidays. It’s not easy to decide whether or not to allow my children to have it in limited quantities or not at all. And it’s a losing battle in this day and age.

My hope is that one day the bells will go off and the plug will be pulled and the people in charge will shake things up for the sake of our health. In the meantime, I pray that mommies and daddies and young and old will become aware and more vigilant about keeping dangerous toxins out of their diets.

The Beauty After the Storm

Easter was memorable yesterday in a powerful way for me. I lay down on the floor in my three-year old’s room to take a nap with him and promptly passed out. Both he and I were at some point shaken awake from our sleep. I felt the floor shaking under me and loud rumblings echoing outside in what seemed like the endless sound of thunder. It was amazing. Both he and I talked about it for some time later into the day. My fourteen year old pointed out that it was pretty awesome to have felt a storm shake the house on Easter because of what we believe.

Matthew 27:50-54:

And when Jesus had cried out again in a loud voice, he gave up his spirit.

At that moment the curtain of the temple was torn in two from top to bottom. The earth shook, the rocks split and the tombs broke open. The bodies of many holy people who had died were raised to life. They came out of the tombs after Jesus’ resurrection and went into the hold city and appeared to many people.

When the centurion and those with him who were guarding Jesus saw the earthquake and all that had happened, they were terrified, and exclaimed, “Surely he was the Son of God!”

This is the sunset that followed Easter evening. It made me giddy. What a gift it was.

I pray everyone had a beautiful Easter and knows how loved and adored you are by a God that said He would die for our sins and did, and said He would come back to life and ascend into heaven and did. He also said if we trust Him we get to spend eternity with Him in heaven. And if the sunsets on earth look like this, can you imagine the ones in heaven?

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 looks good. 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)

AFTER

(Five months into the protocol)

BEFORE

AFTER (Five weeks later)

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

BEFORE

(Pre-disease)

AFTER

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

BEFORE

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

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)

AFTER

(Relief…)

What brings me joy amidst having a ridiculous disease.

BEFORE

AFTER

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

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

BEFORE

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!)

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

Is Your Food Making You Sick?

The following article summarizes so well the dangers our modern U.S. food system poses to our health. When I think about the amount of children and adults on med.s for various attention deficit disorders, auto-immune diseases in babies and children, tables at school for the children with allergies, I think about the role our food plays in our health.

Copied from Dr. Mercola:

“More than 3,000 food additives — preservatives, flavorings, colors and other ingredients — are added to foods in the United States.

While each of these substances are legal to use in the US, whether or not they are safe for long-term consumption — by themselves or in combination — is a different story altogether. Many have been deemed too harmful to use in other countries.

When you consider that about 90 percent of the money Americans spend on food goes toward processed foods loaded with these additives, it’s no wonder most people are carrying a hefty toxic load that can wreak havoc on their health.

A list of ingredients that are banned across the globe but still allowed for use in America recently made the news. The list is featured in the new book, Rich Food, Poor Food, authored by nutritionist Mira Calton and her husband Jayson.

The banned ingredients include various food dyes, the fat substitute Olestra, brominated vegetable oil, potassium bromate (aka brominanted flour), Azodicarbonamide, BHA, BHT, rBGH, rBST, and arsenic.

Seeing that the overall health of Americans is so much lower than other industrialized countries, you can’t help but wonder whether toxic ingredients such as these might play a role in our unhealthy conditions.

Meanwhile, Russia has announced that it plans to extend a ban on U.S. beef, pork and turkey imports coming into effect this month, due to the feed additive ractopamine in the meats. Ractopamine is a growth stimulant banned in several countries, including Russia.

Processed Foods Depend on Additives

When foods are processed, not only are valuable nutrients lost and fibers removed, but the textures and natural variation and flavors are also lost. After processing, what’s left behind is a bland, uninteresting “pseudo-food” that most people wouldn’t want to eat.

So at this point, food manufacturers must add back in the nutrients, flavor, color and texture to processed foods in order to make them palatable, and this is why they become loaded with food additives.

Most commonly, additives are included to slow spoilage, prevent fats and oils from going rancid, prevent fruits from turning brown, fortify or enrich the food with synthetic vitamins and minerals to replace the natural ones that were lost during processing, and improve taste, texture and appearance. When reading product packages, here are some of the most common food additives¹ to watch out for:

• Preservatives: sodium benzoate, sodium nitrite, potassium sorbate, BHA, BHT, TBHQ
• Sweeteners and artificial sweeteners: fructose, high fructose corn syrup, aspartame, sucralose, acesulfame potassium (acesulfame-K)
• Artificial colors: FD&C Blue Nos. 1 and 2, FD&C Green No. 3, FD&C Red Nos. 3 and 40, FD&C Yellow Nos. 5 and 6, Orange B, Citrus Red No. 2
• Artificial flavors
• Flavor enhancers: monosodium glutamate (MSG), hydrolyzed soy protein, autolyzed yeast extract

Top Offenders to Avoid

According to the Caltons, the following 13 additives are the worst of the more than 150 individual ingredients they investigated during their six-year long journey, which took them through 100 different countries.²

Ingredient	Found in	Health Hazards
Coloring agents: blue 1, blue 2, yellow 5, and yellow 6	Cake, candy, macaroni and cheese, medicines, sport drinks, soda, pet food, and cheese	Most artificial colors are made from coal tar, which is a carcinogen
Olestra (aka Olean)	Fat-free potato chips	Depletion of fat-soluble vitamins and carotenoids. Side effects include oily anal leakage
Brominated vegetable oil (aka BVO)	Sports drinks and citrus-flavored sodas	Competes with iodine for receptor sites in the body, which can lead to hypothyroidism, autoimmune disease, and cancer. The main ingredient, bromine, is a poisonous, corrosive chemical, linked to  major organ system damage, birth defects, growth problems, schizophrenia, and hearing loss
Potassium bromate (aka brominated flour)	Rolls, wraps, flatbread, bread crumbs, and bagel chips	See bromine above. Associated with kidney and nervous system disorders,  gastrointestinal discomfort
Azodicarbonamide	Breads, frozen dinners, boxed pasta mixes, and packaged baked goods	Linked to asthma
BHA and BHT	Cereal, nut mixes, gum, butter, meat, dehydrated potatoes, and beer	BHA may be a human carcinogen, a cancer-causing agent. BHT can cause organ system toxicity
Synthetic hormones: rBGH and rBST	Milk and dairy products	Linked to breast, colon, and prostate cancers
Arsenic	Poultry	EPA classifies inorganic arsenic as a “human carcinogen”

What’s With the Double-Standards?

The food industry has already formulated safer, better products for other countries, in which these and other harmful ingredients are banned. So why do they insist on selling inferior versions in America? For clear examples, take a look at a recent article on 100DaysOfRealFood.com.³ In it, Vani Hari shows the ingredient labels of several common foods sold in the US and the UK, such as Betty Crocker’s Red Velvet cake mix, McDonald’s French fries, and Pizza Hut’s garlic cheese bread. Amazingly, while these foods can be created using a bare minimum of additives in the UK (and sometimes none), in the US, they’re absolutely LOADED with chemicals.

“The food industry does not want us to pay attention to the ingredients nor do they care about the negative effects from eating them. They certainly don’t care about the astronomical medical bills that are a direct result of us eating the inferior food they are creating,” Vani Hari writes.

“…We as a collective nation must stop this trajectory of sickness and rising health care costs, by understanding the ingredients we are putting into our bodies. We must challenge the U.S. food industry to discontinue the use of banned ingredients that are not allowed elsewhere in the world. We deserve to have the same quality food without potential toxins.”

Russia Issues Long-Term Ban on US Meat

In related “questionable food” news, Russia recently banned US meat supplies after discovering it contains ractopamine—a beta agonist drug that increases protein synthesis, thereby making the animal more muscular. This reduces the fat content of the meat. As reported by Pravda,⁴ Russia is the fourth largest importer of US meats, purchasing about $500 million-worth of beef and pork annually.

Effective February 11, Russia will no longer allow US meat imports, stating the ban “is likely to last for a long time.”⁵ All meat suppliers wishing to sell their meat and meat products to Russia must certify their meat as ractopamine-free—a condition the US has so far refused to comply with.

The drug is banned for use in 160 countries, including China and Russia, but allowed in 24 countries, including Canada and the United States. While the US Department of Agriculture (USDA) considers ractopamine safe and doesn’t test for it, Russia’s chief health inspector, Gennady Onishchenko, claims there are “serious questions” about the safety of the drug. He previously told the New York Times:⁶

“For instance, use of ractopamine is accompanied by a reduction in body mass, suppression of reproductive function, increase of mastitis in dairy herds, which leads to a steep decline in the quality and safety of milk.”

Ractopamine is also known to affect the human cardiovascular system, and may cause food poisoning, according to Pravda.⁷ It’s also thought to be responsible for hyperactivity, muscle breakdown, and can increase death and disability in livestock. While other drugs require a clearance period of around two weeks to help ensure the compounds are flushed from the meat prior to slaughter (and therefore reduce residues leftover for human consumption), there is no clearance period for ractopamine.

In fact, livestock growers intentionally use the drug in the last days before slaughter in order to increase its effectiveness. According to veterinarian Michael W. Fox, as much as 20 percent of ractopamine remains in the meat you buy from the supermarket. Despite potential health risks, the drug is used in 45 percent of US pigs, 30 percent of ration-fed cattle, and an unknown percentage of turkeys.

What’s the Simplest Way to Avoid Harmful Food Additives?

Ditch processed foods entirely. (If you live in Europe you may have more options than Americans, as you may be able to find some processed foods that do not contain any synthetic additives.) About 90 percent of the money Americans spend on food is spent on processed foods, so there is massive room for improvement in this area for most people.

Swapping your processed food diet for one that focuses on fresh whole foods may seem like a radical idea, but it’s a necessity if you value your health. And when you put the history of food into perspective, it’s actually the processed foods that are “radical” and “new.” People have thrived on vegetables, meats, eggs, fruits and other whole foods for centuries, while processed foods were only recently invented.

If you want to eat healthy, I suggest you follow the 1950s (and before) model and spend quality time in the kitchen preparing high-quality meals for yourself and your family. If you rely on processed inexpensive foods, you exchange convenience for long-term health problems and mounting medical bills.”

The Ultimate

The ultimate husband that is. About a year ago I went on a women’s retreat with two of my new neighbors. We drove up together and bunked in the same room. God met us there too. It was awesome. It was something we all said we would do again. While on the retreat, there was a table with resources for things like marriage and parenting. I saw this cover and thought it was hilarious. I told the girls we should send our guys a snapshot of it and tell them it was what the retreat was really about. We had a good laugh! In all seriousness, today is my wedding anniversary and this is my guy! He is the ultimate husband to me!

He really is and I am so blessed and so in love with him. Happy Anniversary, baby!

(He doesn’t read my blog. And he can’t seem to remember the name of it. But why would he? He lives it with me. Who wants to read about it in their spare time? But I am going to send him a link so he knows he is the ultimate husband to me.)

Be Healed!

I attend a Bible study once a week. I enjoy it and look forward to it. It’s a great group of ladies and it helps me to stay disciplined about getting in the Word and having my socks blown off. We are reading through the book of John right now and our discussions are led by what impacted us in our time reading.

The subject of healing came up today as a result of the reading. My group leader and one other gal in our group of nine has an inkling of the state of my health. Part of today’s group discussion went something like this, “You know, healing is a choice. You have to choose to be healed.” Heads nodded around the table. “People get so comfortable being ill that they aren’t allowing God to heal them.” I didn’t say anything.

This may be true for some people. But blanket statements about healing hurt my feelings. I wanted to say, “I have worked my butt off and given up SO MUCH to care for my body and attempt to restore my health. Walk a day in my body with my pain and tell me it’s something you can get “comfortable” with.” I have refused to give up on my body (despite continued setbacks) and I have prayed with my face to the ground in total submission of His will and plan for my life. But here we are ladies and gentlemen, I’m still rockin’ a disease. And I am not any less of a person or a Christian because of it.

I know I’ve said it before, but my heart is heavy, so here it comes again. It is very difficult at times to be a Christian, have a chronic disease and be transparent with people. You can take away my belief in God and the same applies. It is difficult to have a chronic disease and be transparent with people. Simply because we all judge each other. When you add the fact that I am a Christian, you add another layer of judgement–healing comes into play from a God perspective.  It is unfortunate that it can make being real with people difficult and uncomfortable because of the association healing, prayer and faith have. And the way I’ve been made to feel is if you ain’t healed, when then by golly you must not be praying enough or getting right with God. I say, not true and don’t let it hinder going deeper with God or the people that do accept that you have done and are doing all that you can do to make your body right. It is especially disheartening when judgement is passed by someone who doesn’t know me very well or have a clue what God is doing in my life.

During the time that I was sick recently, I was on the phone with the mother of my son’s friend.  She knew I wasn’t feeling well. She doesn’t know me all that well, but knows a bit about my life. She wrapped up our conversation by saying, “You know, 70% is spiritual!” I had a moment where I thought–did she really just say that to me?

Fortunately, I am secure in who I am, who my Maker is and what His plan is for me. It is good!

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…

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 Late Night Approach

It’s 3 am and I can’t sleep. Tired of trying, despite knowing my alarm is set to go off in a few short hours to get my boys ready and off to school. Head is pounding out of my skull. I hate it when I get migraines like this. This is when I reach for the pain med.s in the cupboard… With so much on my mind, I am hoping and praying that writing will help.

It’s funny how my body handles stress. I have come to learn over the past few years that I must seriously internalize it. I wonder how much of that has come as a result of the abusive marriage I stayed in for so many years. I learned to tuck so many emotions and stressors away in order to function. I notice now that in certain situations, I honestly think I am handling the situation with flying colors. I don’t consciously feel stressed or overwhelmed. But then I wake up with a migraine that is making writing right now next to impossible due to the pain, or I step out of bed and know instantly that my body is revolting in pain with every joint that could hurt yelling at me, I know I am not handling something too well. It usually lasts for a day or two and then I am able to return to my “normal”.

Stressors that I thought I was handling like a champ tonight and apparently am not would have to include the call we received today to evacuate our home due to approaching wild fires, the fact that I had to pick up my boys from their father’s home tonight accompanied by a police officer, and the two MRIs I am having done tomorrow. Now the tears just arrived, so I must be onto something. Sigh.

I hastily started packing bags for the family–clothes, toiletries and snacks. And as I looked around the house, I was at peace with all of it burning down. Hard to believe since we just had this house built and I enjoyed every bit of picking out the aesthetics. But in the end, it’s just sticks and stones and stuff. My family and their well being is really all that matters.

We’ve been in our new home for two months now. I survived (barely) the stress of moving. The toll on my body from heavy lifting, unpacking, and settling four boys in while still maintaining the home and making sure everyone was nourished and my husband had the peace and quiet he needed to work from home was difficult, but I did it. God has been AMAZING. Thank you, Jesus with all my heart for sustaining me, for giving me strength when I was weak, encouragement when I was down, and comfort when I needed it most. He is so good people.

I shared that I was praying about my neighbors and for my neighbors in my last post. God delivered. My next door neighbor on one side, whose husband was deployed in Afghanistan during their build is about my age, loves Jesus, has two boys and is super easy to talk to. Her husband is also home safe. Our neighbors on the other side of us have six kids and are Latter Day Saints. God put us together for a reason. This I know. I am not going to thump her over the head with the Bible. But I will love her and respect her and see where God leads us. She knows what I believe simply because I was upfront with her about my ex-husband and asked her to pray if she ever hears him peeling out of the neighborhood. And because she knows my children attend a Christian school. She and I have similar interests and she understands the demands of caring for a house full of kids. I am so grateful to have her next door. And I am so grateful for the children along our street. It brings my heart so much joy that my boys will have kids to play with. It has helped to make the move a really positive experience for them.

Overall, my body is still holding steady since my almost nine month long run with an antibiotic protocol in my attempt to manage my disease. It has been four months now since I completed the protocol and in the grand scheme of my disease, I haven’t felt better. I haven’t had a joint come under attack and swell in a year now. Wow….a year…..this is the first time I am realizing it has been that long. I have energy that lasts me the entire day if I am well rested, well nourished and stay on top of taking my key supplements. I notice a significant decline in how I feel if I get off track with my diet. And by diet, I mean, the way I eat that has helped take the greatest burden off of how my body feels. I also feel junky if I slack off/get sick of swallowing a million vitamins and supplements 2-3 times a day. It never ceases to amaze me. My mind feels clear and sharp. Praise the Lord. I have done a lot of heavy lifting through the move and in the process of landscaping our new yard and I have avoided any follow up visits with my neurosurgeon or any desperate calls to my mom. One of the MRI’s being done tomorrow is at the request of my neurosurgeon because he wants to keep an eye on my neck and the other is at my request since I have struggled with pain in my lower back area that sometimes shoots crazy, crazy pain down my leg throughout the day. Time to have a look. I have experienced this for three years now.

Hoping I can sneak in a few winks now before the alarm goes off and hoping that writing has helped to alleviate any stress. Not looking forward to how the lack of sleep is going to treat me tomorrow. Praying this finds each of you blessed.

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.