Wednesday, December 3, 2014

You've come a long way, Baby!

I have been wanting to write an update for a while, but I just haven't had the inspiration. Most of the time, I blog for one of two reasons. I either have something I want to share with you (N's Whims news) or I have something on my heart. The problem is, there is only a little happening with N's Whims (I create sporadically, when I have energy), and only little changes in my health. On the one hand, there are great changes that I am very thankful for, but day by day, the changes seem so small and I get impatient that I am not all the way there yet. I guess I was waiting for the day that I could shout from the mountain tops that N is back. In the meantime, time passes and I am not updating anyone. It starts to feel like I am not grateful for the changes that have occurred. 

Have you ever been in a place in your life where you found yourself in limbo, looking forward to an event in the future, imagining how much better everything would be when you just got to _______? I have caught myself thinking this way near many milestones in life (graduating college, getting married, Mike finishing residency, having a baby). Every time, I had to consciously make a decision to stop living for the future and enjoy the now. 
Well, that is where I have been for awhile now. Leading up to my surgery to remove PITA (the pituitary tumor in my brain), I was running out of options to help myself feel better. Every day, my symptoms worsened and I struggled, realizing that I just had to let time pass until it could be removed. The problem with that was that I didn't want to just waste my days--we all know we are given a limited amount of time here, as are our loved ones. I didn't want to waste away the only summer I would have with my family when my girls were 9, 8 and 8! So, we enjoyed the moments we could and made the best of it. 
Day of surgery, 6 weeks out, 12 weeks out--See, I have come a long way!
Since the surgery, I can look back and see how far I have come. Less than a week out of surgery (4 days spent in the neuro ICU), I felt better than I had in a year. Three months out, I have lost 1/3 of the weight, have more energy, have been able to take on more family responsibilities (lessening some of the Mike's stress), and rarely yell anymore. I no longer have symptoms of PCOS, and have been off all meds for that since the surgery. I have also been released from Lyme treatment (we think we got it all)! This is all HUGE! Most days, I am so thankful to be here,  because it is doable. Most days, I feel that if this is the best I get, I will be thankful for the rest of my life. Most days, I feel incredibly lucky. 

And then, there are the days when I long to be 100% me again. I long to have that seemingly endless energy. I long to be connected with the community, teaching fitness classes, encouraging others, volunteering, pouring into others and making others feel beautiful. I long to be my best self. And yet, I am not sure what my best self is anymore. Turns out, the tumor had an impact on many parts of me for longer than we realized. It was slow growing, and the impact increased with time, but it was affecting me internally and externally way before I was aware of it. My PCOS and infertility was caused by the tumor, beginning in high school. My endless energy was probably also a by-product. My inability to focus may have been as well. The thing is, it isn't yet clear what was really me and what was PITA. It is very odd to be 40 years old and wonder who I really am. These thoughts and more have bounced around in my head the last 3 months as I notice more and more things that are different. Even my Myers-Briggs personality score has changed (which is usually very constant throughout life). 

At the end of the day, there are things that haven't changed. These things are the very core of me, and have been since childhood. I still care deeply about others. I have lost some friendships through this journey--sickness is so hard, and some friendships just don't survive. Even though I understand this and have to let them go, I still care and hope for their happiness. I also want to use the energy I do have to make a positive difference in the lives of others--and to raise my girls with this same desire. Doing things for others brings me so much joy. 

So, to sum it up, the tumor appears to be gone and my body continues to heal and change. My pituitary gland is not yet functioning as it should, but is starting to show signs of waking up. I don't yet have the energy to work out or create with consistency, but am finding pockets of energy to do those things on occasion. When I do, I have been encouraged. I love everything I have made recently, and am doing very little repetitive creating, mostly new designs. The strength and stamina I still have when working out is encouraging. I have started working on occasion at The Regal Find, which is a lovely little store full of unique hand-made gifts in Middleton. This gives me an opportunity to feel connected to others, and to forget that I am not yet well. And, I am having a Trunk Show for N's Whims at The Regal Find next Wednesday, the 10th from 7-9pm. I will have all of my new creations there and can't wait to help them find new homes! As I type, I am reminded that I have come a long way baby--and yet I still need to relax and give myself the time I need to heal. 

Thank you all for your patience, encouragement and support on this journey. I have been overwhelmed on many occasions by the goodness and love you have shown!

Thursday, July 3, 2014

Don't cry for me, 'tis just a tumor....

I have gone over and over how to start this blog post, and nothing seems to flow. It isn't something I even want to talk about--yet, I am not good at ignoring the elephant in the corner. Never have been. As hard as this is to type about, the few conversations I have attempted haven't been smooth, either. Humor helps me, but not everyone else, it seems. So, I figure, you can choose to read or not--and then we can talk about it later or not--the elephant is out and life can go on. Here goes nothing.

If you read my last post, you know I am currently being treated for chronic lyme (which, by the way, is going well). During the process of getting diagnosed, my physician ran a bunch of tests. One of the tests that came back atypical was my cortisol level. Long story short, after many more tests (of both my patience and my body), we have found a pituitary tumor. Before anyone freaks out (brain tumor tends to do that in the best of us), as far as tumors go, this is not a bad one to have. He is just a little guy--about the size of the beads I use most, 4x6mm (the irony is not lost on me). He is assumed to be benign, but is most likely secreting hormones and wreaking havoc on my body. So, as cute and little as he is, he must come out.

While there are plenty of bad things about this--fatigue, weight gain, memory loss, surgery, inability to live my life to the fullest right now, etc., there are also many really good things.

One, it is removable. It is not pushing on anything or growing into anything, as far as we can tell. AND, they can go in through my nose, rather than through my skull--so the recovery is not as long (nor does it seem as scary).

Two, the new theory is that I may have never had PCOS (my previous health issues that weren't solvable, only managed). Rather that I have always had this tumor and it is just slow growing. So, that means that if we remove this tumor, I may not need to be on meds for the rest of my life for PCOS.

Three, there is a plausible and reversible explanation for my memory woes--other than just growing older. This has been really frustrating for me--I used to have an excellent memory (I was once falsely accused of cheating on a test because I remembered the sequence of answers from the identical pre-test given and scored in class the day before). Just this last week, I failed to remember an entire story from one of my closest friends until she came to the end and it triggered the memory. I had heard the story only two weeks prior. As a former therapist, stories are fascinating to me--this was troubling. It is not the first time in recent years that I know of--who knows how many other things I have forgotten. On this note--I can't remember who I was training in my basement when I found the tick that caused the Lyme disease. If it was you, please let me know. That would help me pin down the timing of onset. Thanks! On a similar note, if I owe you money, you might have to remind me. If I don't owe you money, you could still remind me and I might not know any better, LOL! So, there is hope that I could get some of my memory back.

Four, if you have to get two diseases that both affect your energy levels, cause a lot of pain, affect memory and focus and keep you from exercising, you might as well get them both at the same time! If you are going to take me out--just get it all done at once. It should take 3-6 months to wean me off of the high cortisol levels following surgery (which should be this summer). I will need to take a tapering dose of a steroid pill for several months. My lyme treatment could very likely be wrapping up at about the same time. Therefore, come Christmas, you could all be getting your N back :).

Five, there is an explanation for everything--it isn't all in my head--lazy, hazy and crazy--well, it is in my head (technically), but not in the way I was beginning to worry! I have gained 30 lbs at this point. Which, when you go from a very fit and muscular 5'3" to 30 lbs heavier with less muscle, it is a big difference. Not easy to take for a fitness instructor--or anyone else for that matter! I am learning humility, patience and to love myself no matter what.

Truly, in the end, that is the best outcome of all. I have slowed down my life, removed unnecessary clutter and distractions, lived in the present and learned to love myself without all the achievements. The deconstructed N is still the same--big heart, living my life with intention, to the fullest I can muster. Aren't we all, really?!

Sharing a little tumor humor--feeling loved!