On Going Gluten-Free

last night's dinner: feta and sundried tomato quinoa, organic green beans from TimberCreek Farms and organic Sablefish from Wallace Farms

Last October when I met with the homeopathic MD, she laid before me a somewhat strict diet she thought I should follow to help me with the overwhelming Lupus symptoms I was having at the time. No wheat/gluten, no dairy, limited poultry, mostly beef and leafy veges. Protein in the morning and before bed. Nothing acidic or processed. Only certain fruits and one-two eggs/week. And some other rules that are too many to mention....but those are the basics.
I sat kinda shell-shocked, unsure if I could do it or not but knowing that SOMETHING had to help. It couldn't hurt to try and maybe it would even help.

So I jumped in. Gluten-free, limited dairy (I can't give up butter and cheese completely yet) and lots of beef. I was/am actually following a modified version of the BloodType diet. And 5months later, I am still kinda doing it. I say kinda because I have slacked a bit on the beef/protein in the morning thing and have been allowing myself too much dairy. But for the most part, I am pretty good.
I am gluten free (most days) and no milk. I do have cheese and butter now and then but I have cut those way back. I eat soy milk and soy yogurt and am learning which GF foods I like and which I don't. My first experience with GF bread was not a pleasant one. I got some brown rice bread from TraderJoe's and it was like eating a brick. But since then, I have found a few things that I do like:
Namaste Foods Muffin Mix. They also have a pizza crust mix that I really want to try.
Glutino Blueberry breakfast bars. And strawberry too. A little dense but so, so yummy! Glutino also makes yummy crackers and some donuts that I haven't tried yet but I plan too. :)
Udi's Cinnamon Raisin Bread and Cranberry Granola. Of all the GF breads I have tried, this is BY FAR the best. I haven't ventured much into the world of GF baking from scratch. It scares me a little. It seems like such a delicate science. I have slowly been accruing the neccesary flours and binders I need to bake from scratch. And I'll get the courage one of these days. Until then, I have found some yummy baking mixes and such that are getting me through.
Stonyfield's Fruit on the Bottom Soy Yogurt- Not all soy yogurt is good. In fact, most is not. But this yogurt is delish!

And it really does help, this whole gluten-free thing. The theory is to reduce the amount of potential allergens in my body so as to calm down my immune system in general and keep the Lupus subdued. Some days/weeks I am better than others. But when I see results (ie: less joint pain, more energy) it is hard to justify eating those chips or cookies or whatever else I am craving in that moment if it will mean discomfort a little later.
So I am sticking with it for now. I am getting into a groove with it and finding things I enjoy. I am playing with the idea of making the boys GF or at least mostly. Everything I read seems to point out that our bodies don't process it well. But that would be a bigger undertaking so we might have to do that slowly and gradually. And I have no idea how it will go when Hubby and I are in Costa Rica in a few weeks, but I imagine I'll be eating lots of fresh fruit and rice and fish. Even when I am tempted to cheat or there doesn't seem to be any good options for things I can eat, I am grateful to have found something that is working for me and I pray for the strength to keep going.

If you are GF or know a lot of great GF recipes, feel free to send them my way. I am always on the hunt. Here are a few blogs that I live by:
Gluten Free Goddess
Gluten Free Girl
The Perfect Pantry



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Here We Go

I had an appointment with a fourth rheumatologist today. Can you tell I am having a hard time accepting the truth that is staring me in the face? She is a very highly respected, well-known rheumatologist at Loyola Hospital. It took me months to get this appointment and yet I almost didn't go. But something in me had to know if she would have anything different to say. But she didn't. Just more of the same. "Yes, it looks like Lupus... Yes, you have to be on the Prednisone.... Yes, you will be on this other medication long term.... No, you can't be out in the sun.... Yes, you may have other flare ups of varying severity in the future... " blah, blah, blah

I am not as stubborn as this whole process is making me seem. I am just thorough. Right? Plus I am truly having trouble wrapping my head around the fact that I have a chronic illness. Even typing that makes me feel icky. Can that really be true? I ran 2miles tonight. I drove Lucas to a swim lesson and planned a fun fair and helped a friend find an apartment and ... I am a fully functioning mom-of-two boys that can't be bothered with this. Add in some moderate joint pain and some other pretty un-arguable evidence and then you have the full picture.

So this is me, coming to peace with this whole thing: Taking my pills as directed and not as my nurse-brain/reluctant heart prescribes instead. Reading a Lupus magazine while waiting for the doctor today and trying not to let myself get worried or sad or bitter. Visiting a Lupus blog tonight and trying to figure out how or if I fit into this new world.

Like or not, I am here in a place of figuring out how best to deal with these cards that I am being given. I am not super sick. I have some achy hands and wrists and feet but that is about it and even that is getting better. But yet, I have 4 professional people telling me they see clear indicators that my body has some funky issues going on. And I have to take medication to keep the funk under control or worse funk could be coming down the line.
So, here we go... I guess I have Lupus. Certainly not what I had next on my life's agenda. But I am here anyway and learning to come to terms with it. And make the best of it. And not freak out. And not over-dramatize. And not underestimate. And not ignore the things I need to do to make it better just because I don't want to have limitations. And ask for help if I need it (ouch). And not let it stop me, unless it needs to stop me... ya' know? And give my boys the best of me without letting it take everything out of me.

Here we go....




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Working Against Myself

I am putting this post on Dupage Mamas tomorrow, but thought I would share it with y'all too. It has been an interesting few weeks. But, things are getting better and I am thankful for that.

All the blood they took on just one of my trips to the lab.... yikes!!!

As a medical professional, I have been told by many older patients to appreciate my body while it is still in good shape. We have all probably heard that at some point- from our parents or grandparents or someone lamenting the health challenges that come with aging. Whenever I have heard that, I just laugh it off and say that of course I don't take my body for granted. But in light of some recent health challenges of my own, I can see that up until now I have totally taken good health lightly.

About 4months ago, I started having some pain in a few of my joints. My first thought was honestly that I am grossly out of shape, which isn't un-true. I had started the Couch-to-5K running training with the hopes of losing a few pounds and getting ready for swimsuit season. But as the joint pain continued to get worse, I backed off the running to make sure I didn't injure myself. And the funny thing was, even when the running stopped, the joint pain did not. It was spreading from my ankles and knees to my fingers and wrists and toes and elbows. This wasn't running related anymore. So after a trip to my doctor and some blood tests indicated something a little more complex may be happening, I found myself sitting across from a rheumatologist who was telling me I have Lupus (SLE).

It was a bit of a shock, if I'm being honest. I was totally expecting this doc to tell me to take a few Motrin and stop wasting his time. Instead, he is listing off to me my new list of dos and don'ts and writing prescriptions. This can't REALLY be it, right? I couldn't wrap my head around it. I am only 33. I shouldn't have a chronic health issue at this point. Not yet.

After two second opinions made it three specialists telling me the same thing, I am now at a place where I am trying to come to terms with what is probably the truth. I still say probably because I am holding out hope that this may not be the true diagnosis and I will be able to stop taking these medications a few months down the road. But for now at least, I have begun walking down this path of treating Lupus and trying to get rid of this joint pain.

Lots of people take medication everyday and LOTS of people have WAY worse things to deal with than this. It is totally treatable and hopefully without very many long-term complications since we seem to have caught it early in the progression. I am well aware that this post may come off as whiny or "poor-me." I hope not though. As much as this could be worse, it has been a bit of a blow. I am taking medications to keep my body from attacking itself. That seems to strange to me. It is like I am working against myself- that left to it's own ways, my body would continue to damage my joints and eventually my kidneys and other organs. And now I have to take measures to keep that from happening.The first couple days after starting the meds, I had to will myself to take it. I want to do the right thing, I am not trying to be stubborn or over-dramatic. It is just taking me some time to adjust to this idea of being on long-term treatment for a chronic illness and having this diagnosis of Lupus be something that will forever be on my radar screen. Even if I get to a point where I am symptom-free (hopefully soon!!!), I will still have to be mindful of it enough to take the medicine and make wise decisions about my life and my body. I am not 20 years old anymore with a semi-immortal view of my own health. I am 33 with some challenges that are changing the way I see myself and my body and my health.

I did eventually run a 5K, two actually. And I am doing another in a few weeks. The running doesn't make it better or worse. So for now, I am sticking with it. I am making some lifestyle choices to reduce stress and get more rest. Trying to at least. I will get this under control. And once I am pain-free again, you know I won't take it for granted. My body may be trying to work against me, but I am determined to turn this around. I am using this as the motivation to take my body back under MY control. Trying to anyway.

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Some 'Splainin'

Well y'all, I guess I haven't done very well at keeping you in the loop.

Last we talked, I was about to go see a rheumatologist for some unexplainable joint pain and fatigue. I was worried he wouldn't listen or that he would jump to an "easy conclusion." In reality, he spent over an hour just talking to me. He examined every joint, looked over my lab work from the last 4 years and let me ramble about all the things that I felt may or not be related. He shared with me about his 30+ years of experience and how he didn't throw around diagnoses lightly. All very encouraging things. I sat there thinking any minute he was going to tell me to take some Motrin and wait out some virus that has parked itself in my joints. Instead, he proceeded to list all the (very believable) reasons he thinks I have Lupus. All his reasons were solid, things I couldn't argue with. I left there speechless, a bit stunned, and with several prescriptions in hand- one to fight the joint pain and one to treat this "Lupus".
In the wake of this, I decided to start the prednisone to help stop this spiral of joint pain. Hubby and I also decided to "cast a wide net" (as he put it) and get a couple other opinions. I have known several people to get false Lupus diagnoses and I want to make sure we know exactly what we are dealing with. One thing I can't ignore is the aching and throbbing in almost every joint in my body. I think the prednisone is helping. I have more energy at least. :)

So basically, that is where I stand. I have a couple other rheumatology appointments in the next few weeks. I am taking the prednisone, cutting WAY back on computer time, going to bed earlier, blah, blah, blah.... just trying to do whatever I can to start to feel better and maybe take a little better care of myself. This joint pain has gotten to an un-liveable level and I gotta do something about it (I feel like such a complainer right now! But I am also trying to be honest about this whole thing.).
And in what may seem to you to be counter-productive, I am still running. It is some of the only time I feel un-tethered. And it doesn't hurt while I am running. I pay for it a bit afterwards, but mostly I feel good that I am working my body and getting stronger. Truthfully, it hurts less to run than to walk sometimes because when I am running, I am in a different zone. That sounds so crazy to say, but is somehow true. So I am not ready to give it up, at least until I get through the 5K in 2weeks that was my original goal point. Then maybe I'll have to slow it down some.

So there you have it. Some 'splainin'. Thank you for all your calls and e-mails and prayers. I haven't been a very good friend or blog-friend lately. I haven't been reading enough about y'all. But I will get back there. I just gotta take some time to figure things out a bit. I am not really anxious about this. I am just trying to take it one day at a time. I am anxious about a lot of other things, though, and I am trying to work through that in the midst of this. So again, I am so sorry and so grateful for my friends. Love to y'all.


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My Newest Challenge

Blogging is hard for me these days, although I just posted over at Chicago Moms Blog about my recent running hobby. It is in part due to the same ol' excuse: life is just so busy and full. But that is only part of the story.
I know I have vaguely mentioned it a couple times, but starting about 10weeks ago my body began a major rebellion. It started with a sore ankle and an achy thumb or wrist and it has escalated from there. I now have what I can only describe as global joint pain. My ankles and knees and fingers and wrists... yikes. It has been a bit of a challenge, especially when I am fatigued and trying to do fine motor tasks (ie: typing, sewing, etc...). Motrin helps. Hot rice bags have become a staple of my evening. I can mostly work through it but I am trying to limit my internet time and get more rest to see if I can figure this all out.
My primary MD did some blood work and it, at this point, is indicative of some sort of auto-immune issue. Truthfully, I could have told them that without the lab tests. My body is attacking itself for sure, leaving me with lots of pain in my joints. What that means, I am not sure yet. it could be hormonal or some other totally rational explanation. But my nurse's mind goes a million places which is not really that helpful. I know I just need someone to help me figure it out so I am seeing a rheumatologist tomorrow and hopefully he will take the time to hear me and see the big picture.
So I would appreciate your prayers as I see this rheumatologist tomorrow. Pray that he would listen to all the things I think are relevant and informative regarding my current challenge. Pray that we would, at the very least, come up with a short-term solution to get me some relief.

I will back here as quickly and frequently as I can.
Love to you all.


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