Doctors Don't Know Everything

Get ready for a bit of a rant.. although I just had a talk with Lucas tonight about not letting one little thing that is wrong color your whole day. So, maybe I should instead heed my own advice instead. Oh, well... I'll do that next time.

If there is anyone out there reading this, and you know me even just a little, you probably know that I love the beach. L.O.V.E. Love. I love the sunshine, I love the heat, I love the sand, I love the sweat, the waves... All of it. I go every chance I get. I stay as long as I can. At least, I used to.
When Hubby and I got back from Costa Rica at the beginning of April, I started noticing a gradual increase in my joint pain/Lupus issues. Long (boring) story short... I am in the midst now of a "flare" up of average intensity (my Rheum's words, not mine). Back on Prednisone, dealing with all kinds of weird symptoms again. Sucks. The worst part is actually that it all started from the heat and sun I got in CR. Then it got significantly worse when I ran the 10K about a month ago. Double sucks.

My Rheum "recommends" that I avoid outdoor running or extended periods in the sun for the next few months at least, until this whole thing calms down. And if I want to keep this thing under wraps once it does calm back down, I probably should avoid prolonged sun/heat exposure in the future. My Rheum obviously does not read this blog or know me very well.

If I am being completely honest, I feel a bit stuck. Would it ever really be possible for me to avoid the sun/beach for the rest of my life? I have two boys who will want to be outside and who I want to grow up loving being on the beach as much as their mama does. And beyond that, I LOVE IT! Why would I do that to myself? It just isn't rational or feasible. Now, I am certainly willing to be a little creative for these years that Lupus is at it's peak. But it is admittedly hard to convince myself that I will one day be without these nagging discomforts and be able to once again bake myself in the sun without consequence.

I know, quit my whining. In a sec...

My doctor may know a lot. But she doesn't know everything. She may be convinced that my life would be better if I did not spend too much time out it the sun. But I am not so convinced. SO much of my life's joy comes from moments in the sun: on the beach, at the park with my boys, exploring something, splashing somewhere. Living.
But yet, this constant achiness/stiffness/fatigue/I-wish-I-could-stick-an-icepick-in-my-wrist pain is just stupid. Stupid.

I know some sort of compromise is the answer. A little less beach/sun in order to have a little less pain. And probably not as much running this summer as I was hoping. I guess I have to push back that goal of a half-marathon for a bit. If I have to.... I just hope the next time I DO get on the beach, I don't look like a beached whale from the lack of running and the months of steroid therapy. OK... rant done.



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Accomplished

I finished a 10K race today. Without stopping. Under my time goal. And it feels good!!

I was so nervous about this one- it seemed like a big leap. I got myself so worked up, in fact, that when I crossed the START line, I was in tears and cried for the first 2-3min of the run. My emotions and adrenaline were all over the place. But I eventually settled in and felt good, even with the heat. It was sunny, in the low 80's with about 85% humidity so it felt pretty warm to me. Especially the last mile or so, I started feeling really tired. It is these types of moments where being stubborn is a positive trait. I told myself, I didn't come this far to quit and just kept going. One foot in front of the other, until I saw the water table at 5.5miles and then I picked up my speed a bit. The end was just around the corner. And then, there it was- the end- with my boys and some friends there to cheer me across.

Today, I feel less like a loser who does all things mediocre. After completing this race, I actually feel like I can do whatever I set my mind to. I set this goal for myself and now I can check this off. After seeing my official time, I started crying again. Relief and happiness. Just grateful for a moment when I see progress in myself, like I do have things going for me.
I texted a friend my official time (since she knew I was stressed about not making it under my time goal), and she told me I should write a letter to myself that I can read on those days when the feelings of pervasive mediocrity come creeping back in. So here it goes...

There are many things in life right now that feel unsure. It is easy to look at the tasks and situations that dominate my life and feel like I am wading through sludge, barely making ground and not ever getting anywhere. But take this feeling of accomplishment and ride it through. I am strong and determined. I can push through difficult things and reach the other side. I have trained myself to run this distance through sheer determination, even when joint pain and busy, tired days have made it even harder. I am proud of myself for what I accomplished today. I CAN do what I set my mind to, and show my boys that hard work DOES pay off eventually.

I know lots of people have accomplished much more and have done this race better than I could today. But the accomplishment of today, for me, still feels good. I am going to let this happiness sit for awhile. And hopefully it will find a nice place in my soul to set up camp for awhile.

I may not do many things well, but for today, I feel accomplished. And it feels good.



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Half Way to...

Today was Lucas' last real day of preschool. Boy, has that snuck up on me. My little baby is half-way to leaving me already. Well, closer anyway. Seems like just yesterday I was stressing about which preschool to choose and now I am working my a** off to make the first tuition payment for private school kindergarten.

Actually, I have been working my a** off at a lot of things lately and yet I don't feel like I am getting very much ahead. I am having one of those days weeks months where it seems that no matter what I am trying to do, I can only get half way. Half way to what, I am not totally sure. But I just know that, if you put all my many task/hobbies/endeavors/jobs/roles on a line measuring success, they would all lie much closer to rookie than to expert.

Tonight, I was in the midst of a million different things, as usual. Caden came toddling down the stairs with such a sweet smile on his face, just wanting to cuddle a little. And of course I obliged. Cuddling that sweet little man close is what keeps me going. These two boys and their daddy are all that really matters to me. And yet, I let so many other things occupy my time and energy and thoughts. And then there is this Lupus thing... and that is a whole other story. Or more accurately, the wrench in the story.

Right now, I just need to go to bed. Along with being half-way to good at something and halfway to having my sh*t together, I am half-way asleep already and need to just give in. On the bright side, I held a sweet newborn baby girl today and she felt so perfect. :)



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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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Living and Striving

Almost exactly one year ago, I began running as a way to get into better shape post-childbearing / breastfeeding /weaning. Also a year ago, I started having the progressive joint pain that eventually led to a diagnosis of Lupus and a somewhat rocky ride so far.

So here I am. There have been some key changes in my life this past year and yet I wish I was not where I am. I don't know if it is the toll of a year of painful joint swelling and achy-ness or the sparse winter-running or the absence of the prednisone I was taking last spring/summer... but my running lately is kinda crappy. I am slow, my legs feel like lead, my head is SO not in the game. I signed myself up for a couple races in hopes that it will give me a much-needed push.
But truthfully, this whole Lupus thing sucks (pardon my French!). Really. Maybe I have mentioned that once or twice before. Admittedly, things are way better now than last spring. My pain is less although consistent. I do have some new symptoms now that I didn't have before but all this is stuff I can live with. Annoying, yes. But liveable. I have been eating gluten-free and trying to be dairy-free too (although that is much harder for me) and that seems to help. It has helped me drop a few pounds which makes me feel better mentally at the very least.

But you don't care about the details. I'm not sure I really do either. Bottom line: I am in the midst of asking God this question: how much of life is supposed to be spent just living and how much is to be spent striving for something more?

I desire so many things: A calmer spirit/mind, more compassion and patience with my boys, to run a 5K in 30min or less, a bigger house with a fenced yard, less debt, more romance, .... I would say that all those things (and the dozens of things I didn't list) are not bad things to want or hope for. But the cumulative effect of constant striving is driving me mad.
For example, I have stopped asking myself (and my rheumatologist) if I will ever be pain-free in my hands. I am setting my expectations low and hoping to be surprised.
But ultimately, if I live in this house forever and continue to lose my patience with the boys and have achy hands and run slow.... that is the reality of where I am. I can try to improve the things I can but I'm having to also come to terms with these blatant limitations and short-comings (both physical and emotional) that are staring me in the face.
I am not saying I am giving up. I am too stubborn for that. I will keep running and keep trying to figure out ways to better my situation both physically and financially and emotionally. I have just been asking God to show me the times when striving is good and the times I need to step back and just live.

I should end by saying I really do have so much to be thankful for: my sweet Lucas is turning 5 in 2weeks, Caden is spunky-as-ever, I am about to have a new niece, I get to go to Costa Rica for a week in April with Hubby's work, I have a job and friends I enjoy... all reasons to emphasize the living more than the striving.





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2010... Don't Let the Door Hit Ya'

Or so the saying goes. Not so sorry to see this one go. This year I mean. 2010 has not been my favorite as far as years go.

Joint pain... Lupus... Twice disappointed by trying to rent a new home and it not working out...
New job that turned out to be a bust... Some struggles in different relationships...
Blah, blah, blah.

I am ready for a fresh start.

As this new year begins, I am not so much making resolutions as I am doing some shifting. Shifting from reactive to proactive. From "I wish the boys would sleep longer" to "Good Morning!" From joint pain to health and energy. From "Where does the time go?" to "I am happy with how I have spent my days."
I have made the decision to give myself a hard-and-fast bedtime on weeknights. I started doing this when my joint pain was at its worst and it really did help. I will be IN bed each night by 11pm. The flip side of that is... no matter what time my boys sleep until, I am going to get up each day at 6am. I fully realize that it may be earlier some days if Caden decides to be an early bird. But on the days they (thankfully) sleep a little later, I am going to get up and shower and maybe even have 5min to drink a cup of tea and read a verse or two to get my day going.

It is about shifting my focus. So much of 2010 was spent reacting to this new health challenge and the actions/words of people around me. Or reacting to those early mornings after later nights when I was already at a deficit. It is just so hard to be patient or proactive when your body and your "schedule" are working against you. Enough.

In 2011, I am going to be gluten-free and more rested. I am going to proactively take care of my body and my mind and my soul. I am going to change my work schedule (increasing my days) so that we can pay down our debt and live more free. I am going to be intentional about how I spend my time and my money and make hard decisions for both.
God has blessed me with a precious woman in my church to meet with and pray with and walk this journey together with. She challenges me when I need it and loves me when I need it. And hopefully I can do the same for her. Having this mentoring-type relationship is the first intentional thing I have done in years for my own personal/mental/spiritual health.

My bedtime is in 7minutes.

So 2010... I can't say I'm sad to see you go. Welcome 2011! The year I turn 34 (ahem... on Friday!) and regain the healthy, happy, vibrant me that I know is still there somewhere. She never really left, she just got muffled at times. Let this be the year I stand up for my own/my family's needs and not let fatigue or frustration or the sometimes unkind words of others dictate how my life should go. I am shifting my focus. Maybe a little more towards myself, but really just a lot more towards my Savior.

Happy New Year to y'all.




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Taking Steps

It was a perfect fall day- chilly in the shade but warmer in the sun. Perfect blue sky accented with the changing autumn leaves. I loved being outside, breathing in the fresh air and enjoying the sunshine.


First, I ran a hilly 5K at the Morton Arboretum at 8am. It was pretty cold at first, but 5min into the run I was plenty warm. It wasn't my fastest time, but not my slowest either. And with the hills and some mild congestion, I am pretty happy with my time. I would have rather it been about a minute shorter but I guess I'll have to shoot for that goal next year.
Truthfully, I am proud of myself that I have (mostly) kept up with the running this spring/summer/fall even through this whole Lupus journey. I do feel like I have kinda stalled in my progress. I can run a bit further, but am not really getting faster. Although overall the joint pain is better than it was a few months ago, the fatigue seems to be more the factor here. I just don't have the energy to run as often. Maybe this fall I can improve on that a bit.
Either way, I ran today without walking, even on the steepest hill. And I am pretty happy about that.

After the run, I drove over to the Naperville Riverwalk for the Walk for Lupus. After my indecision and plea for company, I decided to register and had two of my dearest friends offer to walk with me. I felt so loved and supported. It was a 3mile walk on a beautiful day with two amazing women and it was SO great. Truthfully, it was a bit surreal being in this crowd of people who are in some way affected by Lupus. And it stung a bit to see some people walking today in memory of a loved one. I admit that my mind wandered a bit, thinking about what may be down the line for me. What will my life with Lupus look like? But as I walked with these women who have loved me and supported me through so much, I realized that I will deal with Lupus just like I did the walk today and the run: one foot in front of the other, one step at a time.

I am still very much processing today's thoughts from the run and especially the walk. But most especially this whole Lupus thing and how I am adjusting my life to not let Lupus or fatigue or joint aches define me.
More on that another day. But for tonight, I am happy with the events of this perfect fall day. I am a blessed girl.



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Join the Club

In October of 2005 when one of my dearest friends lost her precious daughter, we had many conversations about how we had both joined this most unfortunate club of moms who had lost their children. It is a club no one would ever choose to join, and yet it is helpful to have others to lean on who have walked a similar road.

Well, 5years later I find myself joining another unfortunate club. This one is WAY less tragic but still kinda life-shifting. I have fought this diagnosis all along. But the more time that passes, the more it seems that I am indeed in the Lupus club or the chronic auto-immune illness club. Just typing those words makes me want to throw up. But with all that is going on in my body lately, the words seem difficult to avoid.

People are starting to associate the illness with me and I am not sure how to feel about that. A new friend forwarded on some information about a benefit where the recipient charity is some Lupus foundation. So very thoughtful of her and yet I am not sure if I would ever go. Knowing that I have been doing some running lately, I had several people tell me about this Lupus walk that is going on next weekend in Grant Park and on the Naperville Riverwalk. It is a 1 or 3mile walk similar to like a Heart Walk or something where you are supposed to be on a team and raise money to benefit the Lupus Foundation of America.
I have no team. I am not a fund-raiser kind of gal. And yet I feel like I should go. At the same time, I REALLY don't want to go. I would feel like a poser there even though I have been given this diagnosis by 4 reputable rheumatologists in the last 6months. I don't know exactly what I am afraid of. Maybe I am afraid of truly feeling like a part of this club that I have been trying to avoid joining. But that is part of the reason I feel like I should go. Maybe it would be good to meet others who are walking this road. I could ask them a few questions or simply not feel so alone in this whole thing. Maybe I could talk about the painful mouth sores or headaches or debilitating fatigue and joint pain and NOT feel so much like a whiner.

I can't bring myself to register but I did ask a co-worker to cover my call for a few hours. Clicking "register now" feels like resigning myself to the truth that I have this illness and I am not mentally at that point yet. I am still very much in the "yes I have all the signs and blood work, but this couldn't possibly be what this is" phase. Maybe not healthy, but where I am none-the-less.

What do you think? Should I go? Is it lame to go alone when everyone else there will probably be with some sort of team? I thought about asking someone to go with me, but that might make me feel even more awkward. (Anyone want to come with me?) Or maybe I just want to walk alone and try to sort out some things in my head.

Chronic health challenges can be a very isolating thing. Maybe this would be a good way for me to connect with other people who have Lupus and also bring my friends a little more into this journey with me. Or maybe it would feel too uncomfortable and I should wait for another year when I feel a little more at peace with this whole mess. Oh.... I don't know. Help!


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Push-Pull

I am in a stage of life where things could be leveling out a bit. Could.

The boys are just great. I mean, really great. Parenting is hard but I get lots of hugs and "I love yous" and that covers a multitude of frustrations. I love being with them but also watching them from afar. I have moments of sheer bliss and then others when I feel like I am totally failing them as their mother. My head is filled with thoughts of "how should I ..." and "what is the best way to ..." I want to raise them right and love them well and have them be joyful, respectful, balanced men who grow up to love others well and serve God. How do I get there?.... still figuring that one out.

This Lupus thing is a strange beast. Just when I thought I knew what was going in, yet another curve ball seems to be thrown my way. New symptoms, recurrence of some old ones. Hearing the words 'chronic-illness' come off my tongue of anyone's around me makes me want to vomit. I am so-very-far from having this whole thing figured out and that is frustrating. But I am keeping perspective (most of the time) and trying to make good decisions.

You see... it all boils down to this: There are a few things in my life that are really important to me. My boys top that list... my faith, my husband, my friends and family. Add to that list being respected by others, doing something meaningful with my life, trying to live the best life possible. I want to be a good friend, a great wife and mom. A good daughter and sister and daughter-in-law and sister-in-law. I want to be a success, to be fit, a good cook.

So here I am, in a place where life could be leveling out, and yet I am here still very much trying to figure out what that may look like. I want to sign the boys up for enriching things but yet I want to be at home with them just playing cars and reading books. I want to take them to the zoo and every children's museum within a 2hour radius but my body won't always cooperate. I want to fill our days and yet I am a better mom when I am not rushed or pressed. I want to have coffee and dinners out with friends, to go to women's bible studies, romantic dates with the Hubby. But more often than not, all I really want to do is lay on the couch and rest. Push-Pull.

I am an introvert who loves (and tries to nurture) community. I am a purposely busy mom who cherishes the slow days/nights. I am a couch-potato, diet-pepsi drinker at heart who desperately wants to be fit and healthy. I have Lupus but that doesn't define (all of) me.

I am a woman, child of God, busy mom. Trying to figure out how to be what I can for everyone who needs or desires a piece of myself. Filtering out things that clutter our life and prioritizing things that enrich it and not letting unhealthy thoughts or influences make those decisions for me. Deciding when to go out and when to stay in and not feel guilty for either one. Asking God to show me what His definition of meaningful is for my life. For my family.

Push-Pull.



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Running (from) Dysfunction

Don't let the title fool you. I have more than one dysfunction. I am just focusing on one specific one at the moment....

I lean on myself WAY too much. That is the long-and-short of it.

Last night was one of the worst nights I have had in a long time. My feet hurt, my hands hurt... my whole body hurt so very bad. I have begun to taper down the prednisone and so far it going just so-so. Plus I worked two long days this week, more than normal, and have been trying to catch up from vacation and get ready for the last market of the season tomorrow. So it has been a busy week to say the least. I laid on the couch last night and then in my bed and just cried. Tears of pain and frustration. I just want this to be over, to be off the front burner.

I felt better when I got up today, but I had to be at work before 7am (my third work day this week) so the relief didn't last long. By 9:30 this morning, the pain was back in my hands and feet. I got home from work at 11:30 in time to send Hubby off to work. When he got home at 8:30, I was pretty spent. So I went and crashed on the couch, right? Nope. I went for a run. Enter my dysfunction.

I simply cannot accept the fact that I am not in control of my body's response to itself. I am in pain, I am worn out, I am frustrated and overwhelmed.... so what do I do? I try to plan those things away. I analyze and try to figure out a way that I can make it all better.

About 10minutes into my run, my hands started to throb. They have truthfully been hurting all day plus running always makes them swell a bit. I should have stopped then, but I pushed through. It was a beautiful night, after all, and I should take advantage of it (so went the thoughts in my head). By mile 3, I was actually feeling pretty good. I had kinda found my stride and, despite my hands, felt like I was plugging along pretty well. Then at mile 4.5, I hit a wall. My body was telling me to stop, but it was hard for me to give in. Then the song "You're All I Need" (Bethany Dillon) came on my iPod and I just crumbled. I sat in the grass and just cried.
"You fill me when I'm empty, You are all I need."

Can I really say that? Is He all I need? When I was in tears last night, were my thoughts about how I was going to get through this or how God was going to get me through this? Do I really believe that He will carry me through? He has before in other times when I couldn't walk alone. But yet this week, when my body is weak and I am tired and I have taken on too much, I chose to try to fix it or prove to myself that I can make it better by pushing ahead. Even the taking on of too much is my dysfunctional way of proving to myself that no Lupus or joint pain or [fill-in-the-blank] is gonna stop me from working three days and having a market and weaning off the prednisone and training for a 10K if that is what I want to do.

The next song on my iPod was "Never Alone" (Barlow Girl). Message received, loud and clear. He is with me and carrying me through. This won't last forever. It is ok if I don't run the full 5miles I had intended to run tonight or make extra slings for the market. I do not have to prove I am in control of my own body and life and schedule. I can let go a little now and then and see where God takes me.
Well, those are the things I should say to myself and to God. That is the proper response and the one I am trying to have. I am a work in process for sure.

The inspirational ending to this story would be that I stood up and finished running the last half mile. But nope. I walked my achy self home and crashed on the couch to lay out my dysfunction here for all to see. And hopefully for me to learn from.

I should add that the song I walked home to was "Lovestoned" (Justin Timberlake). Kinda an odd playlist, I admit. But I loves me some JT! But that's a dysfunction for another day....


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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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