The State of Me Address--Part Two--Some of the Losses

In Part One, I lamented over the weight I've gained. I'm beginning to come to terms with it. Not because I've accepted it, but because I think I've about leveled out. (And NOT because I've been able to stick to Whole30... 'nuff said about that...) Not only has the gain leveled out, I have seen some hope with my own eyes. I saw a friend recently who has been on oral steroids for about a year (a different autoimmune thing). He initially gained some weight but as he has tapered down in steroid dosage, he has lost most (all?) of what he put on. THAT was incredibly encouraging to me. It's one thing to read about people who dropped the extra pounds after treatment is done, quite another to behold it in person.

I've lost some things along the way in addition to the weight I've gained.

I've lost pretty much all of my fitness. I can not seem to run AT ALL. I can't lift anything heavy. I have a VERY hard time even opening water bottles! I was able to resume teaching Spin class back in August and I haven't passed out (yet), so it's not like I'm bed-ridden. I don't actually know if the "inability" to run is the loss of fitness or the extra pounds or a product of the treatments. (Probably a combination.)

I've also lost A LOT of hair! (Yes, that's really a very gross picture of hair I lost one day in the shower. That was AFTER I had brushed and brushed it to try to get most of it out so as to not clog the drain!) Thyroid issues will cause hair to fall out, but from what I've read, steroids can cause that side effect as well. Lovely. My hair has always been super thin and fine so I didn't really have much to lose in the first place. For most of the last 10 years I've let my hair grow long. My husband ADORES my long hair (I wonder if he's blind sometimes) and he lavishly pours on the praise daily so the "work" involved in having longer hair has been worth it to me (well...to him). Although it seems that I've stopped actually losing hair, what I have is in HORRIBLE shape-dry, damaged, easily tangled and generally unhealthy. So, for the last three months I've been talking about cutting it all off. He cried the first time I mentioned it but the more I whined about the state of my locks the more "comfortable" he became with the idea. Yesterday I pulled the trigger and chopped it all off! It's not exactly what I want, but it's a good start for now. He RAVED about it when he saw it. ...a little too much actually... He might really hate it, but he knows it would add salt to the wound if he made any negative comments so he smiled brightness right into me. I choose to believe he at least doesn't hate it. :D

I also feel like I've lost a lot of time. This has been going on for a year. It feels a lot like my shoulder issue did. Well...except for the fact that I trained for and completed a very tough Iron Man while dealing with that shoulder. I've been putting off making a decision about if I will have a kids triathlon training team/program in 2017 until I know if this treatment protocol is going to work. I haven't been able to train or race. I haven't been able to do some of the things I really love (riding my bike, trail running). I'm doing MUCH better, but for a long time I wasn't even able to engage in meaningful discussion! THAT is one of the worst things I lost along the way that has (thankfully, for the most part) returned.

These are mostly inconsequential things that I lost... When this all hit I lost the ability to THINK and to SPEAK. Now, it's not like I couldn't think or speak AT ALL. I had many acquaintances tell me they really didn't see a very big difference. My close friends and family saw it. More that that, I felt it. You know that feeling you get when you walk into a room and you can't remember why you are there? Or you go to the store and you can't remember what you were supposed to buy? That feeling is (usually) fairly fleeting for most people. Imagine feeling that way about 90% of the day. You know the mental acrobatics you go through in order to find your misplaced keys? Imagine going through them to figure out how to put your hands on the computer keyboard, or to figure out how to hold your hair dryer. I "could" do those things, but they didn't come naturally.  One really good example I have used is that of learning to type or to speak a foreign language. When you are first learning, those things are very unnatural and take a lot of mental energy. When you have learned and they are second nature, you don't have to concentrate to remember how to say "bathroom" or to remember where the "T" is on the keyboard. Imagine going through your day trying to remember mundane things as if they were fairly new. Thankfully the progression of my disease wasn't NEARLY as advanced as it gets for some people. I was extremely fortunate to have found a doctor who knew what it was and knew how to get me started in the right direction with treatment.

I'm not trying to be overly dramatic. It wasn't NEARLY as bad as it "could have" been. But for me to recognize, and grieve, the losses associated with this disease is an important part of moving forward. I'm not lamenting (much). I'm not wallowing (for long). I'm not angry about it (anymore). I'm just acknowledging, documenting, FEELING the appropriate emotions, and (soon), I'll be moving on.

One issue I've battled with in my life (believe it or not), is embracing and feeling what I consider to be negative emotions. I can get/have gotten angry fairly easily. But anger is a POWERFUL emotion. Grief feels very vulnerable. Sadness over loss feels ungrateful in some ways to me. I have lived a good bit of my life trying to stay focused on the flip side...what I have to be thankful for. But I believe you can't suppress one emotion without all of them taking a hit. I believe to do so just fuels one thing-anger. Anger is the defender emotion. The protector. When I'm not able to express ALL emotion I get either very angry or very "dead" (apathetic). Hurting feelings hurt. They aren't pleasant...to feel or to witness. When someone is hurting a lot of people want to soothe and comfort. That's all well and good, but the best thing you can do for a hurting person is not to take the pain away, but to enter into it with with them. By reading this you have done that very thing and for that I truly thank you.

Thank you for stopping by and sticking around...We won't be here long.

Part 1a...Beyond Flesh

I have an adoptive brother. My parents didn't adopt him, I did. It's a long story how it came about but suffice it to say he's the best brother by another mother I could have ever dreamed up. He's a deep thinker like myself. Much like a personal trainer will push your physical limits sometimes, he challenges my thought process, sometimes in very uncomfortable ways.

After my last post he asked me two questions:

1) Who are you? (I ask this question ALL THE TIME in my Spin classes...thanks for throwing that back in my face buddy! :D)
2) Why does your current amount of flesh bother you.

If you choose to keep reading, here's the only warning I'm going to give...this is about to get very deep, very fast. I'm also going to talk about some Bible verses, but you don't have to be a Christian to appreciate Biblical truth. So buckle up and hang on...

I'm going to back up a bit to something that happened a while back first.

A couple of my friends shared a blog post on Facebook several months ago that was written by a "larger" woman. I don't know anything about her, but this post was talking about how some reasons people gain weight are "socially acceptable" but generally people are judgmental regarding weight gain. She mentioned having dinner with a friend who tried to gently inquire about the blogger's recent "substantial" increase in size. She also mentioned in a round-about way that she was eating her feelings instead of feeling them because they were painful. She ended by essentially saying her weight and her state of health were no one's business but her own. She sounded very angry and defensive when she proclaimed love for her large body. My friends, and their friends, were all praising this woman's courage.

...uh...I'm sorry...that's not what courage looks like to ME. Courage, to me, is the ability to be transparent and honest. Courage, to me, is the vulnerability to experience all feelings, even (especially) the painful ones. Courage, to me, is the ability to do the hard things in life when you don't feel like it. Courage, to me, is the willingness to live in COMMUNITY with other people, even (especially) those who don't think/believe what you do. Courage, to me, is to speak (your) truth in the face of opposition. Courage, to me, is to really dig to FIND truth, not just expressing what feels good or what's easy or what you think other people want to hear from you.

In all fairness, my friends, and their friends, probably read all of that in this woman's blog. They read it through the filters of their own eyes. I read it through the filter of my own experiences and my own place in life and my own beliefs of what is "best", of what it means to "love oneself".

Additionally, another cord was POUNDED on with me in this post. She had dinner with a FRIEND who expressed CONCERN for her. It felt very much like she (and my friends and their friends) were saying "my life is NO ONE'S business by my own". That is a very surface life in my opinion. That's FINE if that's the experience you want in life. Keep yourself sheltered from potential pain. But guess what, in doing so you also keep yourself sheltered from deep love. You can't push people away and expect them to be there when you need comfort.

The two points I desperately tried to make were:

1) When we love someone, we ask them hard questions and we come alongside them in life, we are CONCERNED about them. Sure, we have to be invited in, but...let me be clear, if you invite me to have dinner with you (or accept my invitation to break bread) I am NOT the kind of person who will leave things at a surface level for long. But if you know me, you knew that already! :D

2) She sounded VERY defensive so I didn't buy this "I love myself" line she was tossing out. She said she was anxious and she was eating painful feelings. She was defensive with this friend. She sounded VERY angry. My friends (and their friends) were saying that she was angry because society places norms on people and people are judgmental and hateful. My argument is that the only time judgment will hurt you is if you are already buying into it within yourself. Something can only hurt if it hits a nerve. That nerve is in YOU. Sure the outside world might have "created" that nerve but you watered it, fed it, and have protected it with barriers. How about you do the work of making that nerve not hurt by HEALING it??

This brings me back to my brother's questions.

I conveniently skipped the first one. I said I wanted to think on it. But I answered the second one like this (edited to correct Siri dictation misinterpretations)

I do not like the way that flesh jiggles! It jiggles when I walk when I move when I do anything! The only time I have ever had really jiggly fat was after my children were born. Although that brings up really good memories, I do not have an infant to show for all the jiggly fat! I also do not like the way my clothes fit. I have never liked my pear/gourd shaped body. But with this new addition of a Buddha belly, I am very unhappy! I also do not like the feeling of being completely out of control with food. Yes, I hear how that sounds, and I have decided to be OK with that! If you can imagine an alcoholic who is drinking… you would not have to ask why that is a problem. Everyone has to eat. But we do not have to eat the whole container of Oreos at one time. We do not have to eat highly palatable processed junk food at all. I feel like at this point I need to be giving my body what is the healthiest for it. You would never consider feeding a dog you love chocolate for every meal. Because chocolate is very unhealthy, even fatal, for dogs. You would not feed your self dog food! This gets a little bit trickier when we're talking about Oreos! But, it's really very close to the same thing…sort of! It's not really the fat I dislike the most. It is what that represents. I have been completely out of control and unhealthy. Out of control and unhealthy has created the fat. If I could take a magic pill, or get liposuction, in order to get rid of the fat, that would not solve the real issues. 

So he came back and said (in part)

There is a danger of letting circumstances determine who you are*. That is not a good thing....Now, take the next step, should you be worried about these things? Based on WHO YOU ARE, are there more valuable ways to spend your time?  maybe yes, maybe no, I don't know.  But, make sure you know.  

(*This has been a big thing I've talked about in Spin class as well... Maybe this is my clue to just stop talking in Spin!! :D  ...as if THAT ever could happen.)

Last warning...if you thought that was the "deep" part, you were wrong, that was just scratching the surface. (If you want to, you can skip to the last part of the last paragraph...I bolded it.)

Here we go...

My answer (edited...this isn't an exactly what I said in the email...)

So....really it's less about body image than it is about being out of control. Control isn't important to me, it's the MAIN THING!! But, "self control" is a fruit of the Spirit. Looking in the Amplified version, it's only actually mentioned 25 times as "self control" so maybe it's not as big of a deal as I make it out to be...and I am POSITIVE it's not supposed to be something I try to muster up on my own. But there is a measure of responsibility on my part. 

Out of control with food represents 2 things TO ME gluttony (over indulgence of food) and idolizing (the immediate taste of) food over (the health and vitality of) my body. The fat in my mind is the product of being out of control. The problem is that now I'm not completely sure about that idea because, from what I understand the fat is going to be there no matter what because of the steroids. That takes the external measure off the table (possibly). OR it means I have to be all the more vigilant to maintain self control because the big "reward" (the body image I associate with being in hyper control) is not going to come. 

THIS is the dilemma. I feel there's a disconnect between control and reward. BUT...(and THANK YOU SO MUCH for FORCING me to think about this)...the reward IS the self control....and self control brings perseverance (2Peter 1). But before self control there is diligence, moral excellence and knowledge.  I've been focused on the wrong reward. 

What's funny is I talk about that all the time (mainly in Spin) and I've missed it. THAT is the THING!! I believe God will bring me back again and again to a lesson He is trying to get through my thick skull. When I find myself struggling with the same thing over and over again I try to figure out what is the reason...what is He trying to teach me. I haven't ever figured it out with this "food" (any "addiction") thing. 

"Daisy" and I have had MANY discussions on what she has learned from her year with Lyme disease and every time I think "but I have no idea why God is taking me through this brain disease thing"...and I stop pushing because 1) I know He will get through to me at some point and I don't have to manufacture it on my own (because I'm usually wrong) and 2) I start to think that sometimes things just happen because we live in a fallen world with disease.  But I have trouble with number two because God is NOT random AT ALL. I think it's like higher level math (that I don't even begin to TRY to understand). Dwayne says it "looks" random but there's no way it is because math is logical and makes sense, we just don't have the capacity to understand all of it (yet). 

Funny because I was thinking about this for a long time after you asked..."who am I". My first thought was "an athlete...well, a wife...well, a mother, well, a follower of Christ...yes, that is ultimately who I am because that's my foundation"....but I wouldn't have ever connected those answers in this way if you hadn't said what you did and made me "reverse engineer it" in this way. THIS is an ah-ha moment!!! 

I wrote most of the following before I wrote the above... but I moved it to the bottom because it felt like a break from what I was saying... now I understand this better. The reward I have been connecting to with controlling food has been body image, then it was fueling, then it was body health....but ultimately it comes all the way back to diligence, moral excellence and knowledge.... 

I've been doing a lot of "research" on dopamine and how it can push you to do things the brain sees as rewarding. The brain really only responds to IMMEDIATE rewarding. Food, the rush of gambling, shopping, gaming. One thing that can be done is to REALLY focus on what the long term reward will feel like. That's one reason I like it when I tell people in Spin to think about the goal and to put yourself THERE in that moment, focusing on every aspect of the goal...the mind doesn't know the difference between reality and fantasy. ((I think this is why Jesus says if you sin in your heart, you have sinned even if you haven't committed the act...and why He was so concerned with our heart over actions.)) So in the moment of WANT, putting yourself as fully in the moment of the long term goal as you possibly can will help the moment of temptation pass. However, one thing dopamine does is spur us to action. This is why I like to connect the goal to what we are doing in the moment ("rewind the tape in your mind's eye and connect it to the work you are doing RIGHT NOW...").  

Interesting thing....when you look at the fruits of the Spirit they are written in this order: "But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control... (Gal 5:22-23a). I heard a sermon a long time ago, as a new Christian, that they are in reverse order...that self control is the foundation, when you have that it produces gentleness, which produces faithfulness....and so on. That has always bothered me because I think God knows the order He wanted His words to be in. Again, I don't think the Bible (God) is random and disordered. But then when you go to the verse in Peter He puts it in this order: "Now for this very reason also, applying all diligence, in your faith moral knowledge and in your knowledge, self-control, and in your self-control, perseverance, and in your perseverance, godliness, brotherly kindness, and in your brotherly kindness, love." Interesting. 

I'm still chewing on it (pun intended) but one thought I have is that the fruit produces the tree which grows the fruit. So the fruit of the Spirt is LOVE (and so forth), and when that seed is planted inside of us (through the Spirit), and we tend to that seed with diligence and supply moral excellence, knowledge...so on...we get to LOVE. I don't know if that's right or not but I do find it interesting the idea of "loving the skin I'm in" has been a BIG thing for me lately. If my "reward" ends with my skin (well, just a bit deeper if it ends with the flesh) then I haven't gone deep enough with that love. Not going deep enough with that love means I keep focused on the flesh. God has forced my hand a bit with the idea of can I love this vessel He has given me even IF it's fat and there's nothing I can do about it??

The thing is I KNOW this already...know it in my mind anyway. I have said OVER AND OVER that it's not about the body...it's about the "self", the "soul". That was the whole theme of a Spin class one time--"loving the skin you're in doesn't mean loving your skin or what you look like...it's about loving WHO you are". ((Don't you want to come to my Spin class (5:30am Monday and Friday at the Southeast Y.)) The problem I have is the "there's nothing I can do about it" part. I think I still have to do MY part of caring for my body in the best way I know how even if I don't get the "reward" I think it will lead to (ie body image, better fueled exercise or better health). Maybe the reward is one of diligence...which will lead to LOVE in the end??

From: http://artilin.deviantart.com/art/deep-thoughts-321908490; Isn't it BEAUTIFUL? I wish I could figure out how to purchase this. Not sure where I'd put it, but it's lovely.

Okay...deep thoughts are over, you can come up for air now!

If you stuck with me, or even if you didn't and you just skipped to the end...thanks for stopping by and for sticking around.
:D

The State of Me Address-Part One, Weight Gain

About half the time I feel positive and encouraged. But in the midst of that positivity I can't help thinking I do not like where I am right now. The state (of being) I'm in is just not where I WANT to be. Some of what's going on is NOT within my control and I am powerless to change those aspects of the reality I am living. Although many things are within my power to change, the lines are sometimes blurred.

I want to give an overview of where I'm at right now. This is more for my benefit than anything else but I believe when we are open and transparent, people can not only help us but can also be helped by us. This overview will be in several parts and will spark several other posts along the way.

First off...I'm FAT. That word has gotten a bad rap. The definition of "fat" (as an adjective) is having a large amount of excess flesh. "Flesh" is the muscle and fat between a person's bone and skin. "Excess" means an amount of something that is more than necessary, permitted, or desired. ("Large" is relative.) I (currently) have (considerably) more flesh than I desire. So, I'm FAT. There's no shame involved in that sentence.

excess...that's what this is a picture of...excess

I've gained a solid 20 pounds since I stopped my "Whole 30" (30 pounds if comparing my lowest to my highest weights). For the record, I didn't like the amount of "flesh" I had even THEN. Until recently, I wouldn't blame the gain on steroids. I blamed it all on myself, because the food I have eaten between then and now.

My diet right after W30 was an experiment that was largely successful (pun intended). I wanted to see if I would have any "health issues" by eating certain foods. In the past when I would eat dairy* I would end up with sinus issues. Garlic* gave me weird swelling and pain. Gluten* and/or sugar* seemed to cause negative emotions/irritability and swelling. Tomatoes* caused headaches. Sweet potatoes* resulted in me swelling up like a blow fish! (*Okay, not EVERY time I ate these foods, but enough that I saw a pattern.)

Since starting the steroid treatment I have been able to eat ALL those foods without any of the symptoms popping up. Those issues had been going on for about 6 years. They might go away for a little while, but they always came back. Until now.

Steroids suppress the immune system. Suppressed immune system means suppressed immune reaction. To me this is proof positive those reactions I was having really were immune reactions. While I'm happy to be able to eat ALL the food with no immune reactions, almost none of my clothes fit! When weight gain is the "only" side effect of eating all those yummy foods, it makes it a little harder for me to not eat them! (Much easier to not eat cheese when you can't breathe well afterward!)

Almost the whole month of June I was in Dallas visiting my grandparents (who have now both passed away). I then went to the Mayo Clinic the first week of July, and then back to Dallas for my grandmother's funeral. I didn't weigh myself the whole time I was gone. I also only wore "comfy clothes". I slowly put on pounds without having objective measures staring me in the face. When I got home I had surpassed my all time heaviest weight (other than when I was pregnant) by about 2 pounds. The actual number doesn't matter because that number could very well be a "goal weight" and/or represent health and vitality for some people. What's important is that it represents "completely out of control" and "undesirable" for me. For almost five months I have bounced all around that number, but it has become a solid average.

I do NOT like that average.

I'm torn because I want to believe I have control over my weight. That makes it my choice to gain or to lose. Let me be clear there are TREMENDOUS, HUGE, MASSIVE, HERCULEAN cravings that come with steroid treatment. Steroids also cause water retention. But it's my choice if I eat all the food or not. I can give in to the cravings or I can fight them. Yes, the battle might be made harder because of the steroid treatment, but I want to believe it's MY battle to fight.

What I'm being told, by those who are in the know, is that it's really not completely my battle. I can fight valiantly and I will still gain weight (until I'm off the steroid train).

However...I can at least slow the roll if I do all I can to do the best I can.

I think it's like aging. My grandfather's last months were spent in an assisted living place. One thing that was remarkable to me was to see the fighting spirit of so many people living there. There was a woman in a wheelchair who would walk her feet along the floor, making several laps around the place each day for her "exercise". (I found this out when I mistakenly thought she was trying to get somewhere and offered to push her.) Many residents played checkers and put puzzles together, not simply as something to pass the time but as a way to keep their minds strong. They were living life as fully as possible given their circumstances.

Then there were those residents who seemed to be just giving in to the aging process...just killing time until inevitable death. I call that NOT living life.

There are conditions that can hinder a person's ability to sustain a "healthy" weight (what exactly "healthy weight" is encompasses A LOT of factors, not the least of which is psychological). Medications and medical/physical conditions, amoung other things, can adversely impact weight. Weight gain and/or the inability to lose weight is also a symptom of autoimmune disease in general. Steroids affect metabolism and how the body deposits fat, particularly increasing abdominal fat. They also SIGNIFICANTLY increase appetite.

But that doesn't mean I should just surrender to it and give up the fight.

Eating/not eating used to be about weight control. Then it became about fueling my body for workouts. I don't know what THE healthiest way for me to eat is, or what THE healthiest foods are for me to eat. But I do know eating all the junk I have been stuffing my face with is NOT the healthiest or the most LOVING thing I can do for my body. Having a plan makes the choice easier. So...I'm officially back on Whole 30. Today is day 5. I get steroids tomorrow. I don't know if I'll actually be able to fight the cravings. But that's the plan.

Thanks for stopping by and for sticking around.
:D