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:

to be negative
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.

Christal

What is Mastocytosis?

The Mastocytosis Society defines Mastocytosis as an abnormal accumulation of tissue mast cells in one or more organ systems(1). This is a very rare and complicated disease. In fact, many medical professionals have never heard of this group of disorders or know how to treat it.

Links to various medical definitions from reliable sources such as The Mayo Clinic & The Cleveland Clinic can be found in the tab above “What is Mastocytosis?”. Here is a definition from a average person who does not speak in 10 syllable Latin words.

Mast cells | Mastocytosis

Mast cells are a part of the immune system, everyone has them. They are best known for allergies and anaphylaxis. If you have ever sneezed when ragweed is high, been itchy after mowing the grass, or had hives, you have experienced a mast cell reaction. When working properly, these cells help to protect you from all sorts of dangers like infection, parasites or venom. Mast cells also play an important role in wound healing. People who have a mast cell disease have a high number of these cells or they have cells that misbehave. Mast cell diseases do have a genetic component but that change can also happen spontaneously, meaning you can pass it on or you can just get it. No one really seems to knows how you get it but it is NOT contagious.

Mast Cell Triggers

When you have too many immune cells in your body or they are dysfunctional you can become hypersensitive. Any small, common, or seemingly benign thing can trigger reactions, which wreak havoc in the life of a Mastocytosis patient. Walking out to your mailbox on a high pollen day, standing in line at the grocery store next to someone wearing too much perfume, or simply eating a pizza can all be something that could cause symptoms. Common triggers may include foods, medicine, chemical exposure, bug bites, & environmental allergens.

Mast Cell Degranulation

This is a big term but it basically means when something triggers the mast cell part of the cell explodes. The inside of the mast cell is filled with granules of chemicals. When the cell opens up it floods the body with these chemical, including histamine, tryptase, and heparin to name a few. This short 25 second video shows an example of degranulation when the trigger of venom is in your system.

Mast Cell Reactions

Reactions can vary from a mild nuisance to life threatening and can include flushing, nausea, hives, abdominal pain, headache, drop in blood pressure, weight loss, vomiting, diarrhea, fatigue, bone pain, brain fog, irregular heartbeat, trouble breathing or full on anaphylaxis.

Mast Cell Disorder Classifications

For people with Mast cell disorders immune cells gather or pool in various parts of the body. Mast cell diseases can be categorized in several groups depending on many, many complicated factors and specialized test results. The list below is very basic and only notes the larger categories according to where the mast cells congregate.

Cutaneous Mastocytosis involves the skin
Systemic Mastocytosis generally involves pooling in the GI tract, other internal organs, or bone marrow
Mast cell leukemia involves the bone marrow
Mast cell sarcoma involves tumors.
Mast Cell Activation Disorder, which does not involve an increased number of mast cell but rather the normal level of mast cells are easily triggered

Not everyone with Mastocytosis responds the same way, respond to the same triggers, or even struggle to the same degree. I know many people who are diabetic. Some are well controlled with diet, some require diet and medication, and some regularly found with uncontrolled numbers no matter what they do. People with Mastocytosis, just like any disease, are found anywhere on the spectrum. Although it is true that there can be very mild cases of this disease, the majority of people have major, life altering, or completely debilitating effects. Living with Mastocytosis can often mean living in a completely different world.

Immense Problems

Some of the biggest problems with having a mast cell disease include:

Multiple symptoms are very easily misdiagnosed
Due to misdiagnosis, people to continue suffering while only receiving partial treatment and allowing the disease to progress
Lack of education about the existence of these disease among the public and within the medical community
There is no cure!

I want to help educated the public about these diseases. I am by no means an expert and scientists with many high level degrees are perplexed by mast cell issues. However, I have lived with Mastocytosis since 1988 and it took until 2007 to be diagnosed. I am finishing a book about my experiences to tell every one of the many miraculous things that took place during my diagnoses and recovery time. It is my hope to raise money for research to find a cure. I hope this blog can help raise awareness for everyone and give hope for those that suffer everyday.

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1. “Mastocytosis Explained.” Tmsforacure.org. The Mastocytosis Society, n.d. Web. 28 Oct. 2013. <http://tmsforacure.org/patients/mastocytosis_explained_1.php>.

Christal

Allergic to the World

Category Archives: Life with Masto