For a couple of months now I have posted every day on Facebook.  I have not traditionally been a big “Facebooker” so I’m a little out of my comfort zone.  It originally began as a way for me to communicate with my amazing friends who have supported and prayed for me during this current health crisis. Friends wanted a  way to check in on me but were unsure if I would be resting or not feeling well. The response to my updates have been overwhelming. Some masto friends say it’s helpful for them to verify if it is just them feeling bad that day or if it is the Masto. Many have suggested that I make those available here on the blog. I’m not sure if I will post my FB status on the blog everyday but we will see. I have several fun posts coming up. The Great Gluten Free Bread Bake-Off,  How to Cook  Like Your Grandma in a Fast Food Culture,  What’s in your Medication?, How to Save Money While Eating Organic, Cooking Quick Tips, and several food tutorials.  Some of the food tutorials are mast cell friendly and some are for everyone. You probably cook for people who do not have the disease so let’s make it as easy as possible on you. If you don’t want to miss a post be sure to follow me and subscribe by clicking on the little yellow flower down at the bottom of the page. Here is the post from yesterday, which marks six months since my anaphylactic reaction…. that really has not completely gone away.   

Day 181 (Thursday) Today marks 6 months. In many ways it seems longer than six months but I remember it like it was yesterday. Regardless, it has been a roller coaster ride. I had expected to be on a formula long before now and off the PICC line. I had expected to be off the steroids and not have any throat swelling after this long. It is life unexpected. We all face life unexpected, perhaps not in matters of a rare incurable disease but unexpected disappointments none the less. No matter what I have faced, God has been there showing me that none of this is unexpected to Him and he’s got this.

Blessings friends!

Christal

Pity Parties and Grieving Loss

Today it really hit me, I can’t eat anymore! I have tubes coming out of my body, food that is delivered in a bag, and almost always need to be in bed.  I’m really sad and honestly feeling a little sorry for myself.  I am craving some Kettle Brand Sea Salt Potato Chips and chocolate milk shake. I would love to go on a long walk with my hubbie, Mr. Hero, admiring all the changing fall leaves. Instead, I am lying in bed next to my very own IV pole, hooked up to my 16 hr a day nutrition that smells like bad baby formula.

It’s been one week since I had my PICC line placed and 6 days since I began TPN. Perhaps, I have been so caught up in remembering how all this works or maybe it’s because I am finally getting enough calories to think about something other than surviving but I am grieving over my situation. Today, I’ve been reminded that I was in this same spot six years. I feel bad needing so much help.  As the Mom, I am supposed to be the caregiver not the care taker. It’s safe to say I am having a pity party for myself. Urban dictionary defines a pity party as a way of experiencing grief, where you spend your time feeling sorry for yourself and whining endlessly about how bad your life is. The thing about pity parties is they are no fun! No one else really wants to attend a pity party with you and really they don’t even help you feel better. I have told my children for years there are two reasons to complain:

1. to be negative
2. to try to make the situation better

So I ask myself which of these is my motivation now? When you have a chronic disease you really need to be cautious about how much time you spend being negative because it can really adversely effect your healing process.

There has been more change in my life. In the last two weeks than many people will ever go through. Let’s face it, having a tube placed right at the top of your heart is scary! Unless you are so ill you require it for medical reasons and you get excited about someone feeding a catheter into you chest, there is probably something very wrong with you. I need and want to process those feelings and grieve appropriately to be healthy emotionally. So what is the difference between having a pity party and grieving? In my opinion it how long it lasts. It’s ok for me to be sad, it’s a sad situation. The problem comes when we get stuck there and linger too long. If I am still feeling sorry for myself about this next week or next month exactly how does that help the situation? It doesn’t, in fact, it will probably hold me back from the best possible recovery, I will more than likely make everyone around me miserable, and I will still be sad. I have given myself a time limit on pity parties, 24 hours max. I’m not say thing that is right for everyone, and I am not talking about the loss of a loved one. Only you can decide that for yourself how long is long enough to grieve. I am a bit of an “A” type personality and for me I need to process and move it along. Twenty-four hours allows me to get a good night sleep and see the world through rested eyes. Most of you know I am not a “crier” but even I don’t dispute sometimes tears are helpful. It’s ok for me to feel sad, snuggle up in my pajamas, and even have a good cry but then at some point I need to get over it.

It may sound cliché but I choose to be happy, joyful, hopeful and thankful. Yes, there will always be reasons to be sad, disappointed or discouraged but there really are so many more reasons to be thankful, we just need to look for them. It is human nature to focus on the less than positive things in our lives. Think about it, when we spotlight the negative things around us by talking about them all the time, worrying, being anxious, and allowing our lives to be consumed by those things we diminish the good all around us. We elevate the bad things to a place they should not be, a place of prominence, and if we are not very careful those negative things can actually become the very thing let take control of us. It actually changes our quality of life and will plunder our happiness. There has been more than one night I the last month I was pretty sure I would not be alive in the morning. When you live moments like these, you look back your life and take stock. You want more time with loved one, you want more time to carry out your life’s mission, and you want to have made a difference. Long term pity parties and feeling sorry for your self is the complete opposite of each of those things. You may not be going through a health crisis at this time but maybe you are struggling in relationships, finances, unrealized dreams or something else. I challenge you to look for the beauty in ashes

Instead of feeling bad that my children, Princess and Game Boy, don’t have a mom that can do everything for them, I think about the amazing life skills they have gained, how compassionate they are for people around them, and what amazing people they have become. I’m thankful the kids are older, can drive, and are pretty much adults at this point. I am thankful my parents, Beauty and The Businessman, have taken time off work to be with me after all I my surgeries and to help take care of me post op since I have such a hard time with anesthesia. I am thankful for a nationwide network of prayer warriors who are up round the clock lifting me up. I am joyful to have friends and family who make great personal sacrifices to call, text, email, visit and send cards. Instead of regretting that I can’t go on a date with Mr. Hero or that I have to be in bed by 4pm to start my food,  I’m thankful that almost every day he climbs in bed with me and says what should we watch tonight? Mr. Hero has, once again, been living up to his name. I have needed help walking so I don’t fall, wrapping my arm before a shower, plugging in and disconnecting my food, flushing my lines,  preparing my food all in a sterile environment to keep me healthy, and he has done so much more. I am blessed to have every single day with my friends and family and to be a part of their lives even if those days are modified because of my situation. Instead of thinking about my stinky food in a bag, I am hopeful when I think about how amazing it is that we live in an age that makes it possible to sustain life in the circulatory system instead of the G.I. system. Wow! God made our bodies with a back up system, that is pretty incredible. Instead of feeling defeated that I am 45 years old and need home health care, I am so blessed to have an amazing nurse, who I have come to adore in one short week.  Instead of focusing on the thought that I have a very rare disease with no cure, I am thankful that I have the world’s foremost authority on my disease as my specialist and he is located in this city. This is a health crisis not eternity. I will be well for eternity. At times like these, I really like to focus on my favorite Bible verse.

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:18

Today I challenge you to focus on the abundant blessings all around you. Feel free to leave a comment about what you are joyful for.