Archive for June, 2013

Sand in my shoes

swimsuitsI know it is a good summer when I can see the Chaco sandal Zs tanned onto my feet, and the swimming suits are drying on the line more days than not. The last few summers have not lived up to those measurements. Office florescence do not tan feet, and it is hard to convince a chronically pained body to haul the kiddos (and their stuff) to the beach after work.  Mellow has become the norm for what used to be my favorite season of the year. However, I have been given two unexpected gifts this year, and summer is back.

First, the pain pump I had implanted in April  is working. I have cut my oral medications in half, which also means cutting my side-effects in half. I’m AWAKE! I rarely need my nausea meds, which I was taking twice a day. And, I still have room to improve, slowly adding more med via pump. It is a revelation.

Second, my difficult recovery from the pump implant surgery led to the nudge I needed to leave my 40-hour a week desk job. Thanks to the investment and trust of my family & husband, I am now working for myself from home. It has done more for my health and wellbeing than any procedure or treatment has in 7 years. The ability to rest when I need it, to get better exercise, and to reduce the overwhelming stress has had major effect on my disease, even more than I imagined. More importantly, I have the bandwidth to be the parent I’ve wanted to be.

I really didn’t realize how deep into survival mode I was. There are things we do because we have to, because our families are counting on us. Even when we are sick. And this transition isn’t easy, we are far from fiscally stable.  But there has to be something in the fact that the last 2 months have been the best I can remember, I am becoming a person I recognize, and life is worth getting-up for again.

So, it seems I’ve received more than two gifts. If you count each day I take my girls to the pool, every pill I skip and every day I end sun-tired, instead of sick-tired, I am prosperous beyond imagination. I hope you too find lots of sand in your shoes this summer.


What I Really Mean to Say – Guest Post

I want to thank GaiaMom for the opportunity to share a guest post at her blog.  I know that this is topic that many of you living with chronic conditions can relate to. 

FineWhat I Really Mean to Say

Living with chronic illness and pain is something that isn’t easily understood by people who are not going through the same thing.  Moreover, the effects of illness are an emotional and personal daily battle.

Most people have this notion that if you look fine, you are feeling good or having a good health day.  Many also don’t realize that even when we say we are fine, we really are not.  At times when I say I am okay, I really wish I could share with people who don’t understand my ordeal how chronic illness and pain truly affect my life.

Every now and then, when I say I am okay or I am fine, I really mean to say:

(1) I hurt more than I can effectively express. The physical part is often easier than the emotional part. I have people in my life who don’t believe in the extent of my sickness and pain so I keep how I am actually feeling to myself and experience has given me many reasons to do so. I have had people who I once called friends and loved ones who have walked away because my being sick was too inconvenient for them. While I have learned that their actions had more to do with them than anything I did, it still saddens me because I would have been there for them.

I don’t have a lot of emotional support so I seek help therapy and I look for solace in prayer and in the things and the people that I love.  These things have allowed me to a stronger person – both in conviction and in the ability to see past my limitations.  So, yes I hurt both physically and emotionally but I have found strength I never thought I had.

(2) I am scared. I have read up on about Rheumatoid Arthritis (RA) and Fibromyalgia (FM). I know there is no cure for either and I don’t see remission in my future. I also know that I will never return to perfect health. I worry about what the future holds and where I will be in ten years or twenty years. I am only 37 so I have a long life with RA and FM. I worry about how I will take care of myself if things get worse and who will take care of my kids. I have valid questions but I know that these questions don’t have concrete answers.

Taking life one day at a time is all I can do and that is scary in of itself. I will never be my former self but I am working on maintaining some level of sanity when it comes to my health. While I am scared, I try to focus on the here and now so that I can make the best of my life with chronic illness.

(3) Life is just not fair. I am not always able to make plans because I don’t know if I will be able to follow through. I don’t know what the future holds because I have to take life as it comes. I can only be hopeful and I am. Chronic illness has taken a lot from me but I have taken a lot back.

No one said life was fair but it is worth living.  While I truly believe that, I just sometimes want to vent and say that life just isn’t fair.

(4) It is not my fault. Being sick is not my fault but sometimes I feel like it is. I worked hard at every aspect of my personal life and professional life before illness and even harder after illness. I am a good parent and my kids are turning out just fine but sometimes I feel guilty that they can’t have the parent that I wish they had. I was a faithful and loving spouse but my spouse wasn’t.  As a result, my marriage ended and while I know that had nothing to do with chronic illness, it happened after I was diagnosed and sometimes, it makes me second guess myself. I have been a successful employee and I have been a great volunteer in the community. I am a patient advocate and I am good at what I do. I have accomplished so many things despite and with chronic illness.

What went wrong – my getting sick – that wasn’t my fault and the bad things that happened after weren’t my fault either. All the good things were due to my hard work.  Nonetheless, if I could I have protected my health, I would have done everything in my power to make sure I stayed healthy but I couldn’t.  Further, I had no control of the awful things that happened afterwards. That just goes back to life simply not being fair. So, I didn’t mean to get sick – I really didn’t – that’s all.

Right now, I am feeling better than I have been in a long time – both physically and emotionally. Sometimes, I actually feel fine when I say I am and other times, I am not fine at all. When I am not feeling well, I have things to say.  Yet, it is not always easy to say them.

Thank you for taking the time read my post. I hope that you will check out my blog, Living Life As I See Fit.  -Lana

Thank you to Lana for offering this guest post swap.  I’ve written a piece, When in Doubt, for her fantastic blog. Please check out it out HERE . – Malia

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