Forward plan

The day before I left for vacation, I met with the NRD (New Rheumo Doc) and talked the results of my labs. He confirmed that I most definitely have the Sjogren's and Lupus antibodies (I had told him that, but didn't have the latest numbers in front of me). Normal ( i.e not having Sjogren's or Lupus) is less than 1...I have a whopping level 8. He decided that because of such a reading, the lip biopsy wasn't going to be needed. Yay no puffy lips (I really wasn't that concerned, in fact, I was kinda looking forward to posting a goofy picture of me with puffy lips...oh well... :) ).

Then we started talking the forward plan. He mentioned the Benlysta meds and I must have made a face because he chuckled and said "oh that's right, you're the crazy woman who doesn't want to take Benlysta". Yup, he really did call me a crazy woman. :)

After some talking on my part telling him that I wasn't absolutely opposed to it, just the material that I had read was scary, he gave me some additional information on expected side affects, results, etc. And I discovered that I can't get approved for the other med that was on our earlier table of options, since my antibodies are Sjogren's/Lupus and the other med is only approved for R.A. (rheumatoid arthritis). Since I meet the required number of factors/symptoms to be diagnosed lupus, NRD officially coded me as SLE (systemic lupus erythematosus) with secondary Sjogren's. ::gulp::. And I agreed to give Benelysta a try. ::bigger gulp::

I spoke with my Current Rheumo Doc (CRD) while I was on vacation and they confirmed that they could administer Benlysta in their offices (Benlysta is given via IV). They are currently working the insurance stuff out, and as long as all of that clears, my first infusion will be on June 13th!

In addition to that forward plan, NRD had me try a new pain med and it works well!!! The pain isn't gone, but it is dulled sufficiently so that I feel like my brain is getting a break from dealing with the pain. It is amazing how much fighting pain exhausts you. And cheer-worthy aspect about this med is that it is NOT a narcotic, which means I can take it during the day (if needed) and not be all loopy/dizzy/non-functioning. Huge huge huge praise on finding something that is working until the new med can be administered and kick in.

So that's the forward plan. We'll see how it goes. Even if it doesn't pan out the way I hope it does, I know that God is still working through all of this and all that matters is that all of this is part of HIS plan.

Unexpected Second Opinion

I had a regular appointment with my rheumo doc today. I sat there and, well, cried, and told him awful I felt and he looked at my swollen and purple feet and walked out of the room and made a phone call.

An hour and a half later, I was sitting in the office of another of Houston's top rheumo doc's (mine is on that list too) at the University of Texas Frank C. Arnett Center for Immunobiology and Autoimmunity (it's a mouthful). I wasn't supposed to get in until May 17th and then with one of the newer docs. The doc I was sitting across from is their top guy- like doesn't take new patients kind of guy. We went through my history and he asked a lot of questions and told me a lot about his research (he was one of the first guys to   map out Sjogren antibodies). An hour and a half later (seriously, what an awesome doctor to spend that much time with one patient!) he looks at me and says "well, it's more than Sjogren's". This didn't make me roll my eyes like you might think, I mean sure, part of me wanted to say "um, DUH", but the other part was very relieved that it was looking like he was thinking along the same lines as My Rheumo Doc. And he was. He started walking me through his thought process.

See, the tricky thing is, my official diagnosis is Sjogren's Syndrome with secondary Reynaud's disease. But the symptoms that are causing me the most problems aren't Sjogren's, they are lupus and other autoimmune disease symptoms. The medications I am on treat all of these diseases, but they aren't working for me. The other medication options available are only approved for lupus or R.A.

New Rheumo Doc says the following "you either have Sjogren's PLUS something else that hasn't presented enough for us to diagnosis or you have, what I really think is,  Undifferentiated Connective Tissue Disease (UCTD)/clinical lupus (this means I have the symptoms, but not the lupus antibodies) and secondary Sjogren's, if we had to put a name to it. Changing the name doesn't change how we tackle the problem, but it does change the options available to us." I was actually first diagnosed with UCTD when I first had problems (they called it Mixed Connective Tissue Disease back then, that term isn't used anymore to describe the things I have wrong with me), and then my Sjogren's antibodies became so prominent that they officially changed it to Sjogren's.

So, anyhow, enough with the complicated disease names. The forward plan is more blood work tomorrow and a lip biopsy in the next week or two. Apparently, the lip is the best resource for determining your body's inflammation levels. So if I look like I got collagen injections in my lip in the next week, I assure you, I didn't :). Whether or not the biopsy is positive doesn't really change things, but if it is positive, it just gives more rationale for why I need to be on the new meds.

After that, we'll talk medication options. New Rhemuo Doc  (referred to as "NRD" below - yes, I work at NASA and I like acronyms) and I had a very lively conversation about medications. Something like this:

Me: My Rheumo Doc and I talked about Rituximab.
NRD: Yes, that's a good option, I was also thinking about Belimumab.
Me: That's another name for Benlysta right? (Benlysta is the scary drug I don't want to take)
NRD: Yes
Me: Not happening.
NRD: You'd rather take Rituximab than Benlysta?
Me: Dude, have you seen the reports on Benlysta's side affects!? (yes, I actually called him dude)
NRD: I would rather be tied to a train rail and run over by a train before taking Rituximab over Benlysta (that may not have been his EXACT example, but there was tying and pain involved). Rituximab has a lot more side affects that Benlysta, especially during the infusion process.
Me: But Benlysta seems to work for only about 0.35% of patients who take it
NRD: Well, yes that's true.
Me: (I just stared at him)
NRD: Well, I was just talking the side affects, not how well it works.

Oh NRD, you are funny. But that was good info he gave me about the Rituximab - I wasn't aware and will have to consider that.

Anyhow, we'll cross the medication bridge when we come to it. The good news is I walked out of My Rhemuo Doc's office with a purse full of a new pain med to try since the Vicadin isn't helping (yeah, bad sign when narcotics don't cut it. I hate narcotics. I mean, I am thankful they exist to help people in pain, but I don't like putting them into my body). So here's hoping the pain management goes better during the next few weeks while New Rhemuo Doc and My Rheumo Doc chat.

As for the Mayo Clinic, I am tabling that after New Rheumo Doc confirmed the research I have been doing that Mayo doesn't have a strong Rheumatology area (they are AMAZING in other areas). It also turns out that the top Sjogren's research center in the US is in Oklahoma (yay for something closer than Minnesota). If needed, they can send me there for more opinions. Or to Johns Hopkins or Harvard, who both have very strong rheumatological research institutions. Good to know I have some impressive options available.

I am so incredibly thankful how God moved and allowed me to get in sooner to get a second opinion. I had prayed just this morning for My Rheumo Doc and I to have wisdom about what to do next and thanked God for the knowledge of medicine and that we would apply it appropriately. God doesn't always answer prayers immediately, but today He did, and He knew He was going to even before I knew what to pray this morning. That's how awesome my God is. Thank you Lord.

My antibodies are raging war here...

Yes, it’s true. My antibodies aren't a fan of me.

So the last you heard of the medical saga was that I was going to get a CT done for the stomach pain. I got that done and it was all clear. Good news, but still begs the question - where is this pain coming from?

Another trip to the Rheumo doc (that’s waaay easier to type than rheumatologist) earned a “we’re missing something. Something else is going on”. So he started brainstorming. And I mentioned getting a second opinion (I’ve been doing some research on my own), and he heartily agreed because I think he’s at the end of his options with me. So he sent me to an infectious diseases doctor.

Why infectious diseases? It was actually a brilliant piece of his thinking outside the box in my opinion. I travel a lot. We just suppressed my immune system even more about 8 weeks ago, which was when I started having more (and new) symptoms. So maybe I had picked up something during my travels that was dormant or that whatever semblance I have of an immune system was able to fight in the background, but now that I am uber immunosuppressed, my body was like “yeah right, have at it”. I went to this really awesome doctor at St. Luke’s and he asked a TON of questions and then looked at me and said “I’m pretty sure this is not infectious. But because you do have a couple of “flags”, I am going to do some basic tests/cultures. If they turn up negative, we’re not putting you through the meat grinder”. So I was chest-xrayed and had about half of the blood in my body drained (yes, that’s an exaggeration, but it was a LOT of vials!). And everything was negative. Yay, I am not infectious. :)

Meanwhile, my symptoms keep worsening. Major issues with fever and swollen joints (as in hip and SI joints so inflamed that I have trouble walking in the evening). And I hurt. All the time. My wrists, fingers, ankles, toes, hips, and shoulders are the worse, and even the connective tissue between my ribs and my jaw is not happy. I was pretty miserable in the evenings during this past weekend in AZ, so I called my Rheumo doc on Monday and he worked me in yesterday.

We started the paperwork to send me to the Mayo Clinic in Rochester, MN (they specialize in rheumo-stuff). We had talked about doing this at my last appointment if the ID doc couldn’t find something. And he also mentioned some awesome rheumo docs at the UT rheumo clinic (in Houston)– so I’ve got an appointment in May with them, and hopefully they can work me in sooner. And then we talked other medication options.

In hopes of tiding me over until I can get a second opinion at UT or Mayo, we’ve drastically increased the dosages on both my immuno-suppressive drugs. So if I was uber immuno-suppressed before, call me uberificially immunosuppressed now. We’re also looking at using some biological medications that will kill my B cells – B cells produce antibodies and my antibodies attack me. Autoimmune diseases can be caused by overactive/dysfunctional B cell production (B cells come from white cell lymphocytes ). He’s starting the process of getting me approved for one of them –it’s not a common med to treat Sjogren’s, but it has been done before for patients who are “not responding to aggressive therapy” (that would be me). It’s ridiculously expensive and difficult to get a hold of, so there is a lot of insurance hoopla to go through. Thankfully, there was no more talk of the scary new lupus drug he had mentioned earlier. I have done some additional research and refuse to go on it, but looks like it’s off the table. Thankful about that!

So there we go – future consultations at the UT Autoimmune and Rheumatology Clinic and the Mayo Clinic in work. Uberificially immuno-suppressed. And my antibodies don't like me :).

So thankful that my rheumo doc doesn’t have ego issues about me getting a second opinion – not that it would have stopped me, but it makes it less stressful. And I am thankful that even though I am hurting and am uncomfortable, God gives me the grace to still get work done and spend time with friends and family.

"Fantastic Voyage?" Sorta...

The post title is a throwback to the 1966 movie "Fantastic Voyage" - where a special submarine and medical crew are miniaturized and injected into this guy's body to repair something...I've never seen it, only heard the references (yeah, it was either "Fantastic Voyage" or "Invisible Enemy", which is an old Doctor Who episode, as the post title - I figured I'd have more bites on the F.V. :) ).

I almost posted pictures... but I think that would be crossing the line...I mean, who really wants to see the inside of my stomach?

On Friday I had an EGD (esphagogastroduodenoscopy) done - where they knock you out and stick a camera down your throat to look inside your stomach. On top of the flare I have been having, I've developed some intense stomach pain, so the investigation has commenced. Thankfully, the EGD was normal - I got to see cool pics (after the procedure of course. I was awesomely unconscious for it...) of my esophagus and stomach and stuff. Everything checks out clean...which is both relieving and frustrating because, where is the pain coming from? The gastro doc is having me get a CT this week to see if that will show anything. Huge praise is that I didn't react badly to the anesthesia as I have in the past - the plastic bowl/bag strategically placed in my friend Amanda's car for the ride home was NOT needed :). I think she might be more thankful than I am...

In the meantime, I'll admit I'm having a rough go of it, so prayers are appreciated. I appear to have picked up a sore throat/cough bug, so that in addition to the stomach pain, in addition to the fever/joint pain from the flare is just not much fun. So if you ask me how I am doing and get a subdued "eh"...well, I'm just being honest...I can only wear the "everything's hunky-dory peachy keen" mask for so long - it gets tiring and it's not honest. So working on the balance between being honest, but not complaining. I've been spending more time praying for others - I find that helps take my thoughts off of me and avoids that self-pity cycle that can be easy to get into.

I am HUGELY thankful that my stomach has starting growling again and my appetite seems to be picking up. Praise God! And that even though I don't feel well, I am still able to get things done at work and at home - a HUGE blessing. It definitely helps mentally and emotionally when you can still be productive. And God has been teaching me more and more about how His plans are different than mine, and better, even though I can't understand exactly why things have to happen they way they do. And that He will sustain me. I am learning more about not stewing on the "why is/isn't this happening?" and more on just resting on "I AM" and the fact that "I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God who loved me and gave himself for me" (Galatians 2:20).

Whew, but SO ready for this particular trial to be over. And that's being honest :)

180 degrees

I had a 180 degree moment this week.

Background (potentially background overkill...)

I am still flaring and this past weekend, started having some intense stomach pain, so I headed to my regular doctor on Tuesday. I'm on the low dose of steroids, which can cause ulcers, so I thought maybe that was the problem, even though I have been on oral steroids a TON in the past and never had any problems. She agreed the pain was definitely my stomach (versus connective tissue, because I have had problems with connective tissue inflammation in the area that the pain was in) and expressed concern about the pain combined with the weight loss I have had, so she said I need to get an endoscopy of my stomach done. So I have a consultation with a gastroenterologist next week to get that scheduled. She prescribed an acid reflux med and an appetite stimulant. But, I am SO tired of swallowing medicines, that I've decided to hold off on the appetite stimulant and see if acupuncture can help. Yup, I am back under the needles. I had 30 (!!!) in me on Thursday. The last time I was flaring, the needles helped break the cyclic fevers I get when I flare, which helps SO much in making me feel better ('cause really, you just feel so BLAH when you have a fever). I had needles in my stomach too, and those HURT going in, so that's an acupuncture-y sign that something is going on. And my stomach started growling again when she put them in...so hopefully a good sign of things to come. I see the acupuncturist next week as well, so I am hoping to get the same fever-eradicating results as last time :). Oh and my rheumatologist decided to double my dose of one of my immunosupressive meds. So needless to say, I was mentally, emotionally, and spiritually maxed out on doctors, pills, and the "House- esque"-ness of my situation by mid-week.

End background overkill.

But the title of the blog comes into play this past Thursday, as I was sitting in my car in the drive thru pickup line at Walgreen's to get the acid reflux medicine. Originally, the prescription my doctor wrote wasn't covered well by my insurance and I wasn't going to spend that much money on something that may or may not fix the problem. So, this was actually round two at Walgreens for this med. The pharmacist told me the total and it was even more than the first prescription and that it was so expensive because I had reached the limits on my insurance. That made me pause. 1) I have really good insurance, so that just sounded weird and 2) fleeting panic on what would happen if my insurance REALLY was maxed out. And then my brain kicked in and I started asking a series of questions about my prescriptions on file, had them rerun some insurance stuff, and finally requested that they remove the first acid reflux med request from my file and voila! the new med cleared (cost me $5, yay insurance!). As I was driving away, I found myself thinking "wow, that's just great, cluttering up my brain with all sorts of prescription/insurance-y info, wish I didn't know this stuff"...and God just turned my thoughts and my attitude 180 degrees. I became THANKFUL that I knew what questions to ask and what suggestions to make - it probably saved me about an hour on the phone with the insurance company the next day trying to figure out what the problem was.

I am so thankful that God is faithful to continue to do the work He is doing in my life even when I am not open to His teaching. Reminding me that He is Sovereign. Increasing my dependency on Him. Reminding me that He is all I need.

"And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ" - Philippians 1:6

Back to square one?

It might just be back to square one. With respect to treating my disease that is.

I started flaring again last week and just happened to have my standard every 3 month rheumatologist appointment scheduled for today, so the timing worked out well. I hate when I make my rheumatologist get a sad face- he just sits there and listens to me list off my physical complaints and his brow gets more furrowed and the corners of his mouth turn down more. Just not fun. I appreciate how dedicated he is to getting me feeling better and that he really listens to me.

As you loyal blog readers know, my disease has been really unstable the past two years. I’ve been flaring more than I have been in remission. My doctor and I finally said the words I was loathe to hear at today’s appointment -“the meds aren’t working, we need to try something new."

A new drug was just approved last March for the treatment of Lupus - which I don’t officially have, although I have a ton of symptoms of it. That’s the tricky part about autoimmune diseases - there is so much overlap of symptoms that it can be very hard to figure out the exact name of your disease (for instance, for about 4 years, my diagnosis was Mixed Connective Tissue Disease - then I presented much more solid symptoms of Sjogren’s and Raynaud’s - so it changed to that - but lately I have been presenting lupus and other autouimmune disease symptoms - so it’s a constantly changing beast). This new drug sounds really scary. I should be used to scary drugs, considering the cocktail I take now, so for me to say it sounds scary, well, you get what I mean.

If we did decide to go with this new drug, I wouldn’t start until the summer because of the trips I have scheduled. I am willing to wait until after the trips because I am not horribly uncomfortable or incapacitated. And I really want to go on these trips. The side effects of the medication and how it has to be administered (via IV) would prevent me from traveling to remote locations until we see how my body reacts to it. And I get the feeling that my doctor wants to mull it over a bit longer too, so we aren't rushing into anything at this time. They took a TON of blood today and we are still trying to figure out why a year and a half ago my body stopped responding to the steroidal treatments that we were using to stop the flares. I’m thankful for the time to think this over and also look at other options and possibly get a second opinion, as much as I trust my current doc.

So for now, I maintain the usual medicine cocktail and we added a low dose of prednisone (steroids) to help as an appetite stimulant (since we're pretty sure the steroids won't do anything with the inflammation due to my apparent immunity) - let's just say I've lost a decent amount of weight over the past few months and I don't want to end up looking like Skeletor :eww:

So here's to this flare being short lived. And I would greatly appreciate prayers for wisdom for me and my doctor on what to do next. Also, can I just say how thankful I am to live in an age where we have these medicines to help keep us feeling well? Read in a Melissa voice: "I am thankful" :)

Gluten free - 1 year

Hard to believe, but it's true. I've been eating gluten free for an entire year.

Now remember, my definition of gluten free does not include sauces that might have vinegar, items with modified food starch, etc - I call these things "minor gluten" and don't try to avoid them. I do avoid major gluten items, like pastas, cookies, crackers, breads, etc that have regular wheat flour/gluten in them. I am thankful that I don't have to be strict gluten free like someone with Celiac would have to be.

Eating gluten free hasn't done what I hoped it would do - I wanted it to help with reducing inflammation in body in hopes that my flares would be less painful. Well, not only were my flares painful this year, but I had my longest one ever since being diagnosed. Disappointing, yes, but there still is a glimmer of gluten free hope.

I have solid evidence now that my G.I issues are gluten related. How do I know? In December, I started slowly reintroducing gluten. I ate a piece of zucchini bread. No problems. I waited a few days, ate another piece of bread. No problems. Then I went a bit crazy while putting a goodie plate together for some friends and ended up eating two pieces of zucchini bread and a piece of poppy seed bread. Oh, did I pay for that. Horrible stomach cramps and let's just call it other G.I. issues. Even days later, I wasn't processing food like I normally do. So, I stopped with the bread experiments. When I got to Arizona, I munched on these awesome non-gluten free crackers my mom makes. They are addicting. And I over did it. Thankfully, the reaction wasn't as violent, but my body definitely wasn't happy. So, the great thing about this discovery, is that I can cheat when it comes to gluten, as long as it is in small amounts. This means, I can have a cookie that someone brings into work... A cookie (not 3). I can have a small piece of cake to celebrate someone's birthday.

So, I plan on smartly implementing the cheating plan and maintaining my gluten free diet because of the benefits that I have seen. I am calling my gluten free experiment a success, despite not getting the desired results.

Needles

After almost a month of some serious fever-running, poor-sleeping, joint-swelling, flaring, I decided to try out acupuncture while my doc and I are waiting for some labs to come back. I did my second session yesterday.

And there has been improvement :)

Since the first session last week, I have slept all the way through the night (yay for no more waking up hurting!) and even though I am still running a fever a couple of times during the day, I am no longer CONSTANTLY running a fever, and the temp is lower. So yay for progress!

I am going to do one more session next week - we are hoping that my joint pain starts to go away too. If it doesn't, next week's session will be more localized on the joints causing the most pain.

I'm going to a different acupuncture place than I did for The Back and I like this place much better. Acupuncture doesn't hurt, but it can have its uncomfortable moments (like realizing you have 24 needles stuck in your feet, legs, hands, arms, stomach, and collarbone), you do feel the prick of the needle, especially since she is using a larger gauge needle for me (I think it's because of how much inflammation I have...), but after the needles are in, I get to lie in a spa-ish room with nice music for about 45 minutes. I totally nap :). For the most part, I don't feel the removal of the needles, but I do bleed a bit for some of them, and I have had two small bruises form. All in all, I don't mind acupuncture, and I am thankful that it is working!

One interesting tidbit, with my flares, my appetite goes all weird, as in, I don't have one. So when I saw her yesterday, it was already past lunch time and I hadn't eaten yet since I wasn't hungry. She pushed on a spot on my inner ankle and asked, is this tender? Oh, it was. JAB. Needle in. And my stomach started growling!!! Apparently, that particular spot is connected to my spleen and my stomach. Who knew!? And when she put in the one in my stomach, more growling! (granted, my appetite is back to its lowness state today, but don't worry, I am making sure I eat enough :) ). Anyhow, I just found that interesting.

Ode to Flare (up)

(Nerd sidenote: thought this picture was appropriate cause of all the recent solar weather :) )

Flare-up. Or as most auto-immune disease sufferers say: a flare.

Flare-up (compliments of Webster)

1: a sudden outburst or intensification

2: a sudden bursting (as of a smoldering fire) into flame or light

Autoimmune diseases are interesting creatures. They vary incredibly from patient to patient. One can test positive for one disease and negative for another, yet still have symptoms of that disease. New symptoms can pop up and symptoms can disappear completely. A large majority of people with autoimmune symptoms thankfully live a large portion of their lives with minimal symptoms and then a flare occurs and you're just miserable.

When it comes to sharing about my disease, I always think: "should I really post this, is is too much information?".

But after realizing that I would tell everything that I post to anyone who asks (this isn't a secret!), I post:

1) To share what God teaches me through my disease
2) To help myself process what I learn through each up and down
3) To help people understand autoimmune disease better
4) To attempt to encourage those who are suffering, or who know someone who is suffering

I haven't had a flare since last fall (it was a LONG flare, but settled by January). However, I've been flaring for almost two weeks now. For me, a flare means my joints hurt, I run a low grade fever almost constantly, I start feeling worse as the day grows later and I have no energy. For me, which joints are affected changes from day to day. For this flare - it has been my fingers, wrists, toes, ankles, and shoulders (upper back), with a dose of my SI joints thrown in every few days or so. Flares can last days, weeks, months. It is always different and you never know exactly what to expect or when your immune system is going to start behaving again.

I am thankful that my flares only worsen in the evening, which means I can still be productive at work and feel fairly normal until about 4pm (woot for being a natural morning person!). I've found morning workouts are okay as long as they are not too intense and I stagger them every other day; in fact, they help work out some of the joint stiffness. I crawl into bed around 7 or 730pm because usually I am hurting so bad by then that it takes awhile to fall asleep and I usually wake up during the night hurting. I curtail evening activities, because while I have gotten pretty good at pretending I feel okay so I can still have a decent social life during flares, it does take a lot out of you!

For this flare, my rheumatologist put me on some oral steroids for two weeks (IV steroids didn't work last time and we're still not sure if my usual steroid injections helped in making my back go all wonky). Four days into the steroids, I've seen a slight improvement...not as great as I would have hoped. The next step is tweaking my immuno-suppressive meds - according to the doc I still have a lot of wiggle room. But we just tweaked them last year too...I don't like it when my body destabilizes so quickly. Silly body.

I've noticed during this flare, that I am handling it better spiritually and emotionally. Trusting God more, not getting as frustrated when I have to cancel hanging out with a friend 'cause I just don't feel like putting on a smile-mask anymore. Taking one day at a time and doing what I can each day. Now, I am not perfect. Oh no. Believe me, there have been some tearful nights lately where I just HURT and I am sick of the struggle. But God is good to remind me that there is a reason for all of this (of course, He hasn't revealed that yet, but there is still peace in the thought :) ). I am learning so much about Him. He doesn't give me more than He and I can handle. And His plan is more incredible than I could ever imagine. So I focus on that when I start hurting really bad (and then pray to fall asleep REALLY quickly ;) ).

So, here's to this flare ending shortly. Don't take good health for granted. Do what you can.

Shadow Creek Ranch Sprint Triathlon

So, this is the only picture I took of this race. It's of my shirt :)

The day before this race, I tweaked my back...adding air to my bike tires no less. It went something like this: Front tire: pump, pump, pump, pump. Done. Back tire: pump, pump, pu-OH MY GOSH THE RIGHT SIDE OF MY BACK!!!! Yeah, it was hurting to bend at the waist...as in the motion that you use on the bike to lean down to grab the handlebars (and aerobars). So, I stretched, and iced, and popped some muscle relaxers. Rinse and repeat that series throughout the day. The back was feeling better by evening, so I went to sleep thinking, "if I wake up and it feels better, I am doing this race until The Back tells me to stop". And praise the Lord, when I woke up, the back was at about 85% (pretty much normal these days, although, I've been hitting about 90% lately). So I jumped in my car and headed to the race.

My stats:

Age group (30-39): 19/31

Swim: 12:57 (slow, but only 50 sec slower than my pool time, which shows how nice the open water swim was)
T1: 1:55
Bike: 48:08 (16.8mph average)
T2: 1:14 (one of my longer T2 transitions because I forgot to lay out my Endurolyte capsules (salt pills) and had to dig them out of my bag)
Run: 36:04 (11:16/mile pace) - eh, I was just glad my face didn't explode away from my skull. It was so hot.

Total time: 1 hr 40 min.

The Story:
I met my friends Erin V, Rick, and Lisa L in transition, and we walked down to the swim start. This was the first time I was doing a swim where it was a point to point swim (ie, we started the swim in one spot and exited in another spot). What this meant was a glorious straight stretch of swimming with no buoys (and swimmer congestion) to swim around. As we waited for the swim to start, we were "treated" to a surprise shower of the ground sprinklers. Apparently, someone forgot to tell the park to turn them off that morning :). Despite the heat and humidity, 400 triathletes found themselves shivering at the swim start. Good times.

Swim (77 deg, 90% humidity)
The airhorn blasted and off we went, water churning. It was actually one of the less hectic open swim starts I have done, so that helped me get into my pace (my SLOW pace) quickly. I only finished 50 seconds slower than my pool time, so the open water craziness at swim start wasn't too bad (for comparison, my last tri swim time was 3 minutes slower than my pool time). I have so much room to improve in this area.

Bike (81 deg, 82% humidity, heat index, 86 deg)
The bike was pretty decent. However, I hadn't ridden my bike in 3 weeks and hadn't done an actually brick workout (bike then run - I did do two 'pseudo' bricks: after a 45 minute spin class, I ran 2.5 miles) so I was cautious on how much I pushed it on the bike, I didn't want to blow up on the run. I definitely could have pushed more.

Run (86 deg, 72% humidity, heat index, 92 deg)
The theme of the run was "hot, hotter, holy moly it's hot". There was no shade on the concrete trail that we ran on for 3.2 miles. I ran with Gatorade, something I have found key for me to do so I don't overheat (too much :) ) on the run. I also took an Endurolyte capsule. Endurolyte is a brand of salt pills - they are supposed to help you not to overheat. I forgot them on the bike, so I think if I would have taken one on the bike and then on the run, it would have been a bit better. I did have to stop and walk a couple of times, not because my muscles were tired, but because I was seriously afraid I was going to do damage to my skull as the top of my head felt ready to blow off. HOT.

Thoughts:
I did not feel ready going into this race. Due to some other medical issues I had earlier in the month, I hadn't put in the training time I wanted to. However, after the race, my muscles felt great, so that tells me I did have the training. Now, I need to up my training so I can start getting faster. My back did GREAT during the race. It did AWFUL after the race. By the time I drove home, it was starting to tighten and by late afternoon, I could barely walk. I stretched, iced, rested, and eventually popped a muscle relaxer and a Vicadin because it was THAT bad. Thankfully, when I woke up on Monday, it had calmed quite a bit and I could walk without the "granny stoop". My chiropractor got me in at 9am and PTed me up. By the end of the day, things were much better. I've had to use the back pillow all week for additional support, but my run this morning went well (no back issues all day), so I am so pleased with how quickly the Back bounced back. Thank you Lord! But still, I'll take one day at a time. One race at a time. And be thankful for what I CAN do and for what He allows me to do. By the way, this race happened to be one year TO THE DAY from when I went to the ER initially for my back pain. How great is God? He has taught me so much about myself and my walk with Him, my position before Him. I would NOT trade in the past year for what I have learned. And that my friends, can only be typed because of His grace. Thank you God.

It's incredible, really....

Incredible how amazingly adaptable the brain is. Bear with me here...I'll get to the incredible part, but a little background first...

My workouts over the past two weeks have included 1.5-2 mile runs, over 500m swim workouts, a two-workouts-in-one-day morning swim/afternoon run, a brick workout (6.5 mile bike/1 mile run), and a spinning class.

Oh yeah, and I signed up for my comeback triathlon at the beginning of May, Mother's Day actually, - a super sprint distance of 200yd swim, 8 mile bike, and 2 mile run.

And I am doing a 5k next week, with the goal of running as much of it as possible.


I am feeling good. But it is a different type of good than I felt a year ago. My body has a new "good".

My back still hurts. It's usually just a small nagging ache and sometimes (rarely these days) a sharper-suck-in-your-breath-quick kind of pain.

This is where the brain is incredible...it's adjusted my pain tolerances. These days at work, I rarely am aware of my back (unless I have to stand for a long time or sit for awhile without my lumbar pillow). That's AMAZING. I could be constantly aware of my back, constantly aware of it not "feeling right"...I imagine that would make me very sad and not much fun to be around...(at first, because I've seen God's grace in my attitude the past 9 months and know that He would bring me around eventually :) ). I am SO grateful to God for designing our brains to adapt to uncomfortableness so that we can still enjoy life. I'm overwhelmed by the mercy in His design. And yes, there may be days ahead where I will have trouble remembering this mercy and be constantly aware of pain, but not today. Today I am going to marvel at the design of my God (and pray that on that day when I am hurting and having trouble remembering, that one of you will remind me of this post!):

"For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well." Psalm 139:13-14

More than 3 months gluten free...

Crazy how fast three months goes by...

Yup, and still eating gluten free. I've decided to stick with it as much as possible. As much as possible meaning staying away from things that obviously have gluten (things with wheat flour) and not really paying attention to things with modified food starch, vinegar, "natural and artificial flavors." Although, it is hard to break the habit I started with reading food labels...I keep finding myself grabbing a product from the grocery store shelves and turning it over to read the ingredient list.

I like the gluten free diet because:

1) Some GI issues I had that I thought were related to my meds have completely disappeared
2) I've found some great new ways to eat more veggies
3) I feel better...healthier in my "insides". Weird description, I know, but hopefully it makes sense.
4) I can do it - it hasn't been a hardship for me to switch to gluten free. I thank God for the easy transition.

Do I miss bread? Every so often...but then I think, "but I feel better not eating it"...and then I don't miss it so much :)

Progress

I'm continuing to make progress with my health and my back. My stomach and inner ear are handling the new dosage of the immunosuppressives well (they initially made me super queasy and my head all foggy). I'm definitely starting to stabilize- a long-sought answer to prayer!

This past week I completed 4 workouts:

Tuesday- run 0.75 miles, walk 2.1 miles, run 0.25 miles
Thursday- walk 1 mile, run 1 mile
Saturday- 800m swim workout
Sunday- 10 mile bike ride

The back handled it all pretty well. I definitely could tell it was getting used to the activity. I woke up this morning with sharper than my new normal pain, which made leaning over to eat my awesome flax cereal a bit of a challenge, but I spent some time stretching it out and over the course of the day, it feels back to "normal". I don't think it liked the "back-to-back" (is that a pun?) workouts, so that was a good thing to learn. I'll be careful to space out my workouts for awhile...gotta give the body time to adjust.

I am planning on signing up for a super sprint tri the first week of May. The distances are 200yd swim, 8 mile bike, and 2 mile run. Before I do that though, I want to do a short brick (bike, then run) workout to see how the back handles the loading. I'm a few weeks away from attempting that though...

In the meantime, I've signed up to volunteer at two upcoming triathlons. I'm doing body-marking (writing folks' race numbers on their arms and legs) at the Kemah tri in April (I raced this last year) and my training buddy, Lisa, and I signed up to help out at one of the bike aid stations at the Texas Ironman in May.

I am really excited about volunteering at the Texas Ironman. I figure watching an Ironman in person will just make me want to do it more. Oh yeah, I have the heart of an Ironman...not sure about the body, yet, but we'll see what it will let me do. It and God of course. Anything that I can accomplish physically is a direct testament of God's grace in my life, because my doctor says "you really shouldn't be able to do that" (when it comes to running and triathlons). So to Him be the glory. And I will be thankful for whatever progress I make, remembering the past 8 months and how walking without grimacing is a victory in itself.

Rollercoaster

That's what this week has been, a rollercoaster.

Now if you had asked me how my week has been on Friday, I would have said GREAT. So, apparently, it was a very unsymmetrical rollercoaster...

I got in 3 great workouts during the week:
Monday - 4 mile walk
Tuesday - 600m swim
Wednesday - 3 mile walk and 10 minutes on the elliptical
Took Thursday and Friday off 'cause I had some long work days and evening plans

I introduced short running periods of about 1 minute every 3/4 mile or so and my back was doing well. Still the ever present "hi, I am your back and I am not normal", but nothing awful.

Then yesterday, I went on a walk...I wanted to go 5 miles. I started out at a slower than normal pace, due to the distance and wanting to up the amount of time I was trying running (from 1 minute to 2 minute). About a half a mile in, I knew it was going to be a rough workout...my hip joints were stiff, oh hello Disease...back was okay though. I ended up doing 4.3 miles and was a bit gimp on the part home (and walking SLOWLY). The back really wasn't bad, it actually felt pretty good on the runs. It was just my whole body. Why can't my body listen to what my mind and heart want it to do? Dumb body needs to grow some ears...oh wait...

You see, I had this somewhat secret goal of walking the Galveston Mardi Gras Half Marathon on February 20th...which just happens to be my 30th birthday. And I came to the realization yesterday that it is just not going to happen at this time. I can't make it through 5 miles without being pretty uncomfortable. So...disappointment city.

It happens. I know. And I can think about the fact that I still locomoted 4.3 miles...that's pretty good considering the past 6 months and yes I am happy about it...if it wasn't for that thorn-in-my-side-not-meeting-my-goal-of-walking-the-half-marathon.

So I am working through it. Me and God that is. Tough questions being asked, tears being shed, learning a new level of being patient and waiting on Him. Thinking about the "short term" makes me want to cry...but thinking about the "long term"... I know He is working this for His good and He will be glorified and I will learn a WHOLE lot in the process.

Sometimes the process has it's stinky moments....

One step at a time...Philippians 3:14

Vault of Torture

I really really really wanted to call this blog "Ovary Crunchers" but thought "hmm, is that really appropriate?" So I made it the first line of my blog instead :D. Read on, you'll get to it...

I had a, we'll call it "back episode", on Tuesday. And to start off, NO, it was not related to my running a mile on Saturday. How do I know? 1)Unless running can cause joint inflammation in one's left hand as well as the back, this was totally related to the fantastic action of my white blood cells attacking my connective tissue (ie my disease) 2) I have been running for the past month, for comparable durations to what I did in the mile, and never experienced any issues- these running episodes were in addition to 3-4 workouts per week (stationary bike, elliptical, aquajog/swim) that I have been logging, so I really don't think the running caused this. However, I will of course, continue to pay meticulous attention to every minute sign that my body throws when I start running again. Believe me, this gal does not want to be on the active lifestyle sidelines.

That being said- I woke up on Tuesday morning unable to bend my fingers on my left hand (an occasional occurrence for me, so that didn't worry me). However, my inability to stand without seeing stars and triggering my gag reflex from the pain did worry me. I crawled to the medicine cabinet (praise the Lord I keep the potent stuff in a lower drawer), downed a Vicadin (hate that stuff) and a muscle relaxer and proceeded to sob myself into a drug induced stupor. (Big thanks to the roomie who worked from home in case I needed something- thankfully no bonding moments with a bedpan were required of her). By the afternoon, I could hobble fairly well and I continued to improve into the evening.

Of course, once I could speak without drug-induced slurring, I called my awesome chiropractor/PT inflictor to schedule a torture, er, PT session the next day.

On Wednesday, I was THANKFULLY able to move around pretty well, some limping and I was doing the whole stand-up-like-an-old-lady routine (no offense meant to the elderly out there). I headed to the Vault of Torture, or more commonly known as my chiropractor/PT inflictor. Where I proceeded to regress to my pre-run-by-two-months-PT-treatments of...you got it, OVARY CRUNCHERS.

What are ovary crunchers? The most hated of all hated PT therapies (Dr.A, if you are reading this, I am very thankful for all your help. Really.). My chiro has me lay on my side on the torture table and she proceeds to grip my side with both hands as hard as humanly possible and dig her fingers into my belly, attempting push my ovaries through my lower vertebrae in the process. Whilst my ovaries are being crushed, I then have to swing my leg up, and then as back as far as I can go without passing out, and then down. This HURTS. Tears are shed. Why must I do ovary crunchers? Well, apparently, when my body experiences the Big Bad Inflammation, it goes into self-defense mode (i.e. every muscle in my body attempts to curl up, fetal position). One of the most trouble-causing culprits is the psoas muscle (red arrow is pointing to it below).

It's a big tough muscle and mine is SUPER tight (it's like its trying to get away from the inflammation...smart muscle). So ovary crunchers are pretty much the only way to get at the muscle (since it's buried behind things...like my organs) to stretch it and get it to behave. Along with some other contortionist-like stretches that are part of my now vast PT stretch repertoire.

So there you have it. Right now, I feel like I did about oh, 2 months ago. Not quite ready to walk a speedy walk, but not far off. I am super estastic to see how quickly my body has bounced back this time and I pray that this will continue. And that this back inflammation does not become part of my standard tool bucket of disease symptoms. Thanks for all your prayers!

Medical update

So the latest on the medicalness of Melissa...

Saw the rheumatologist a week ago. We upped the dosage on the organ rejection medication (used for immune suppression). Turns out I've been running fevers of about 100 degrees every day starting around 4pm- this is due to my disease and just illustrates that my disease is VERY active right now (my doctor admired my gruesomely purple fingers and toes, with lovely angry red blister/ulcers on them...seriously, who needs a Halloween costume when you've got my hands? :) ).

He then asked how my back was doing and if I had decided go with the spinal injections. I told him that I wasn't convinced that the ortho doc thought it was biomechanical and given that I have made some awesome progress in general and especially since going on the new medicine, I am thinking it's all disease related, and given that the spinal taps I had in high school botched some nerves up for a good few years (my left leg would go numb if I sat in a certain position), I didn't feel that poking around in my spine right now was the right thing to do. And he agreed with me 100%. That made me feel good.

My disease flared a little stronger this week (stress) and my SI joints became inflamed again. But I was actually pretty happy about it because it shows that it is my disease and not some weird other back thing going on. They (SI joints) are already feeling better so I figure I will be back where I was activity-wise last week as soon as things calm down again.

But in general (pretending this week didn't happen)...things are definitely improving!

A Soliloquy on All Things Medical

Haven't felt like blogging in awhile, but I had a couple of doctors appointments this week, so for those of you who want the latest, read on...

I've been having a LOT of problems with my autoimmune disease the past couple of weeks and it worsened this week. So when I went in to see the back orthopedic surgeon on Tuesday, he said that we had to wait for my disease to settle down before doing anything. He told me not to be a hero though (snort- seriously I am like the biggest whiner ever!)...if my back is still hurting me in a week, just give him a call and they will schedule the epidural. And my back is still hurting. It is, however, MUCH MUCH better than it was, a fact that I am so grateful for. I can walk for about 30 minutes before I start becoming uncomfortable, as long as I walk a moderate pace (which to me feels SLOOOOW). I can stand without much shifting around for about 20 minutes...and with lots of shifting for about 40 minutes. Sitting isn't too bad either, when my SI joints are behaving (my disease can cause inflammation in the SI joints, which seems to be happening every other day or so). So all in all, I am much improved from almost two months ago! Yay!

I saw my rheumatologist today and unfortunately we are adding another medication to my daily routine. I'm already on one immunosuppressive drug and a super strong anti-inflammatory and we're now adding another immunosuppressive drug (seriously, put me in a plastic bubble!). Plus, they hooked me up to an IV and pumped me full of steriods this afternoon to help try and calm things down.

I hate being on more medications.

BUT, I am very thankful that I am not taking these medications for their originally intended use:
one med is a chemotherapy drug (I take a very very low dose) and the other is used for organ transplant receipients. See what I mean? Me <- THANKFUL!!!!

So here's to some prayer and Western medicine...do your thing!

Wait

I met with the back orthopedic surgeon on Tuesday and the good news is- it's nothing bad. No ruptured discs, no tumors, no massive degeneration. Yay! It is however, some arthritis around that spina bifida occulta (minor) and some inflammation in that area that is impinging on the nerves, hence the pain. So he wants me to wait 4 more weeks to see if it will go down on its own and continue with the PT I've been doing with my chiropractor. If after a month, there is still no significant change, I am to come back so we can talk about doing localized steroid injections into the spine to help with the inflammation. So in one word: WAIT

I've decided that I don't like the word WAIT.

I had a bit of a struggle that day with WAIT. I hurt. I am tired of hurting. I had a "hate" rant on the drive home. I listed all the things I "hate" about the situation I am in. I cried. I got home and called my mom once I had composed myself, which as you all know, doesn't work, because as soon as you hear your mom's voice, it's over :). So I go on and on for like five minutes and at the end, she says "honey, I'm sorry, I didn't understand a word of that". I totally busted up laughing. And that's what I needed. I saw my selfishness. I just received good news from a doctor and I was mad about it. So I asked myself, "what are you so mad about?"...

The long and short of it is I am mad that this is preventing me from being ME. I can't hurry to the teapot when it is whistling LOUDLY when the water is ready, or answer the doorbell in a normal amount of time, or take care of ONE errand in less than 30 minutes...let alone run and bike, and do the 50 million things I like to do at one time. I can't be ME.

BUT (of course you knew there was a BUT coming)

"I have been crucified with Christ, and I no longer live, but Christ lives in me. The life I live in the body I live by faith in the Son of God who loved me and gave Himself for me" Galatians 2:20

That's my identity. I am not defined by how many errands I can run in an hour, by how quickly I can get from point A to point B without grimacing, by how "hyper" or "bubbly" I am feeling (yes those are two recent descriptions of me that I have heard)...I live my life for God, I belong to Him, and He loves me. That's ME. And inflammation in my spine can't remove me from that position.

Very thankful for the perspective that God revealed and for the grace for me to see it. I am also thankful that this is temporary and I admire people I know (Aunt Laurie, Lyle Gurnsey) who are fighting much more painful battles than I am...and they keep their chins up and keep on fighting. Yeah, I am uncomfortable, but really, what do I have to complain about? I belong to God.

I started doing acupuncture treatments this week, in hopes of reducing the inflammation and pain. After two sessions, I think I am walking a bit better, so that's great.

And as part of my PT, I am about to go jump in a pool and aqua jog! Pretty sure I will have the lifeguard take a picture of me in the pool, with my iPod bandana-ed to my head so I don't get bored jogging in the water (or get the iPod wet!)

Here's to progress, slow progress, but progress nonetheless!

Spinonite

That would be spine+kryptonite=spinonite. And I am referring to the amazing powers of my spine to render MRI machines useless.

Today I went to the back orthopedic surgeon. He's great. He pulled up my xrays and explained all sorts of cool bone/spine medical stuff. For those of you who have spent excessive amounts of time in doctors offices/hospitals, you know that it's really interesting to learn about what's going on in your body and why...(plus I've always had this medical geeky side to me...ask Claire, who was subjected to my excited ravings the other day about an article I read about antibodies...it was really cool though...really).

But I digress...

So the back doc said it's definitely my back, not my hips. He ordered a MRI of the lumbar spine to figure out what might be causing the pain. His two big theories right now are 1) turns out I have a congenital deformity in my spine (called spina bifida occulta- no, not 'spina bifida', according to the back doc, whoever discovered the occulta bit, he shoulda thought twice about the name). I already knew this from the hip doc who looked at the xrays. Basically it means that one of my lower vertabrae is weird- instead of the two ends meeting up, one end is actually on top of the other end (like, almost bisecting it), at about a 60 degree angle (I know you can't see it, but I am TOTALLY forming the shape with my fingers for you all right now :) ). Anyhow, lots of people (10-20%) have these types of occultas and it's not a big deal...for most people. As it would happen, I am a medical oddity in a lot of areas (hush) and thus, it may be causing some weird inflammation in my spine or something (although why NOW beats me...) or 2) that I could have a bulging disc....good news there is it doesn't look like anything is herniated (which matches the zero leg pain I have- the big red flag for herniated discs). So back MRI for me.

Once I again, so pleased with the design of the medical center, everything in one (okay one LARGE and spread out) location. I waited for about 3 hours there until my MRI appointment (praise God they were able to get me in today! I was not expecting that).

All the techs I have interacted with throughout this process have been so friendly and kind. Nothing different about today.

Tech Guy leads me into MRI room #1 (oh yeah, this story requires numbering...). The platform goes in the tube, the jackhammering starts, stops, platform moves out, Tech Guy realigns something, platform goes in, jackhammering, platform moves out while they reboot the machine (at this point, I inform him that the digital display above my head has an incorrect weight for me...I did not spontaneously gain 30lbs...), platform in...FAIL. Tech Guy informs me I have broken the machine. Oh quipy Tech Guy.

We walk to MRI room #2 (read, rinse, and repeat on the above, except without the me gaining 30lbs)...Tech Guy informs me I will be receiving a bill for 10 million dollars...

...they load me into a wheelchair (I'm in a hospital gown by the way) because they recognize that it will take me about 3 days to walk across the street to the OR where there are additional MRI machines...wheel me away...I think I looked a bit conspicuous in that wheelchair wearing silver sandals and holding a bright orange purse in my lap...or maybe not ::shrug:: MRI room #3 was a success. AND, they felt so bad about it taking so long that I got my parking fee waived. Saved $9! Nice.

I meet with the back doc on Tuesday to review the results. He said based on the findings, they will probably (hopefully!) be able to pinpoint the source and do a procedure where they inject pain reducing stuff (I wasn't clear if it was steroids or numbing potion) into my back. According to him, I am already on the world's greatest anti-inflammatory (I actually did not know that, I just know that it works...good to know my rheumatologist isn't holding out on me ;-) ), so there's not much else he can do at this point.

On other progress, they got me a close-to-my-office-building parking spot at work, so next week I am going to try going into the office for a few hours- I'm managing/tolerating sitting much much better than I was a week ago. PROGRESS!!!

Standby for more medical drama on Tuesday... ::close with medical drama theme song::

The medical saga continues...

Good news...I think...the hip orthopedic surgeon (after more xrays and much leg, hip, and back movement) thinks the labral tear in my hip is not the cause of my pain (I kinda agree with him, solely because my hips don't hurt, it's my lower back). He says a lot of people have labral tears and don't even know it. So...no hip surgery for now! He's referred me to a back orthopedic surgeon...not that it means I need to have back surgery (oh I shudder to think of back surgery...best not to think of it at all), but the back guy will have more insight into what seems to be causing the pain. I went to the said-referred back doc today, but he was MIA (well, not MIA, he's on vacation...bad schedule people...). So I am seeing him next Thursday (that is, if I can't get into a different back doc's office before then...I'm pretty desperate here...I mean, if a receptionist, nurse, or doctor just says, "how are you doing?" to me, I turn into bawling, sobbing Melissa. It's quite the feat...a soggy, mucus-y feat that is...).

Anyhow, after returning home after my longest-time-not-in-a-semi-lying-down-position, the only position that provides a slight lessening of my uncomfortableness (yeah, let's just say I was ouching it up quite a bit when I got home), I called my sports med chiropractor and praise God she got me in this afternoon (where Blubbering Melissa once again appeared). She read my reports, films, moved me around, and proclaimed that I definitely needed to see the back doctor, but, that did have some angry hip flexors that she would gingerly (her words) stretch in hopes of getting those to unangrify. So, I'm back at home, my soas muscle (main hip flexor) stretched, pulled, iced, a fancy "recommended by NASA" quality lumbar pillow at my back, and every other day appointments set up with her until I see the back doctor...and I still hurt the same.

Things to be thankful for:
1) Getting some good Scripture memory done (2 Cor 12:9-10). Owned.
2) Online shopping- my house is getting accessorized with the click of a button
3) Ability to do some work from home- just emails, telecons, working on a flight rule, but its helping to keep me sane
4) Reading- I've read 7 books in the past 1.5 weeks, perhaps I will make my New Years goal after all
5) Awesome friends and family calling/emailing to check in on me. Thanks all!

To be continued with the next doctor's visit...