Thursday, December 22, 2016

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.



1 comment:

It's only a conversation if you talk back to me...