Blowing Smoke

♥Disclaimer - Remember these are my personal feelings behind my body. Not everyone will view thier trials and tribulations as I do. And go!

Lately I have been getting more and more self conscious about my scars. Mainly, I would say because they are beginning to multiply the older I get.

It kills me when I comment about how horrible I feel about them and people respond with things like, "It is proof you're strong enough to be here"; "You beat whatever was fighting you" ; "Scars are beautiful embrace them they make you stronger" ; "They make you unique" and so on.

No! There is nothing about this alligator scale that makes me stronger. Actually, because of them I have had several hernia's making more medical issues in turn weakening my body. Nothing about my scars are beautiful or unique. Many people, mainly CFers have these scars. I have seen them, so they are in fact not unique. In my eyes beauty is not what I have on my stomach, arms, neck, legs, or collar bones. I have clearly not "beaten" anything as CF still has control over my body and organs.

Every one of those feel better bs statements are just that, BS! People simply blowing smoke up your ass to somehow make you feel better about a man made, unwanted, deformity on your body.

Creams will not take it away. Tattoos will not cover them up, because in my case they will always be re-opened and cut into. Making a scar cover up tattoo pointless. They will not go away just by wishing it gone and trust me they only fade so much with time.

★The thing that is interesting to me, is nine times out of ten the people saying these things are people who have a scar no longer than an inch. They have very thin scars if any that hardly show up at all and have no clue what it feels like to look in a mirror naked and want to vomit by the sheer look at yourself and what surgery has done to your body.

Yes, surgery that saved my life. So I am thankful for them everyday. That appreciation for my surgeries, scars, and doctors does not minimize how horrible they look to me and well society as a whole, let's be honest here. I am happy to be here and love that, everything I have been through has made me the woman I am today, however, I am sick of people saying that I should "cherish" my scars and embrace them as "beauty and strength".

★I embrace them as life saving measures. As a fighting chance to keep smiling every day and as a vow to never give up because the worse that can come from life saving surgeries are ugly ass scars.  That is what I will embrace about my scars. Now, don't get me wrong I am proud of my scars and I am in no way ashamed of my scars. I will just never think of them as beauty, unique, strength, or empowering parts of my body.

Thankfully disgusted,
   Sandi

♥There is a beauty in flaws if you look at them in the right lights. This however, for me is not really in that category.

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Glass Half Full

The ups and downs, happy and sad times, meetings and goodbyes can be so overwhelming . Life with CF isn't a picnic in the park but, it is worth it. Worth every breath I take because without the struggle I have faced for 27 years, I would not be the woman I am now! This is my style of taking all the negatives that come from a disease like Cystic Fibrosis and turning it into a positive.

1.
A new day is the best kind of days to reflect. Although, seeing the sun only brings on allergys, congestion, coughing fits if the weather is just so. That feeling that never goes away. The pressure. The wheezing. The tight chest it is so irritating. Hospitalized I hate seeing the sunlight. Why? Because it reminds me of the fact that I am not at my best and I can't go anywhere for a while. When I am sick the sun is the last thing I want to see. My blinds always stay closed when I am in hospital hell.

That sunshine is such a great thing to see when I am "healthy" and home. The warmth makes everything look so silly to complain about. Every morning the sun comes up if you want it to or not. The best part is if you see it and feel it you are lucky enough to still be here. Which is the best thing you can ask for right?

2.
Food, how I hate you and love you at the same time. I NEVER feel full, I know what a drag, right? I am also rarely ever hungry. Days can pass by if I am caught up in one of my projects that I will completely forget to eat. I just shut off the function that says, "Hey, dumbass eat something today!" Heaven help me on the days I don't eat correctly. It is like a grizzly bear trying to catch a fly in my stomach. Painful, bloated, tense, gassy, and an overall train wreak.

When I remember to eat, it makes a vast difference. Although that is what food does so I would hope it works the correct way. I am able to eat a lot and all high fat-high calorie foods, which is nice. When I remember to eat like the bottomless pit that I am, I am healthy. I have more energy and can function properly to a point, even if it is a pain to consume enough food to sustain weight.

3.
Other CFers, the downfall is getting close to those CFers just to see them get sick and worse is terrible. Watching them not make it to get the call for lungs is heart breaking. Seeing them struggle with rejection or infection post TX. Seeing the dreaded status updates "RIP (insert name here)". Or the message from their family member saying, "Just want to let you know they are on life support". It hits you like a ton of bricks thinking, I just talked to them they were "good" what happened? When in reality it can be anything! One bad pneumonia stent and that is all it takes.

The positive side, it is amazing getting to know them and it is awesome having that connection with somebody. Never meeting them yet sharing so much with them. Having somebody who understands the medical jargon and CF lingo couldn't be nicer. Thank you social networking for something.

4.
Relationships WOW all I can say in that respect is, rollercoaster! Period! All of the medical hoopla, gross bodily functions, hospitalizations, pills, and the overall crapptastic things make it so tough to find someone to stand by you, is tiresome. It isn't impossible just really difficult. Even once you find that one it doesn't makes it easy. Constant struggles with quality time, dating, having social times, being "normal", hospital stays,  feeling like you are letting them down. Being too sick for sexual times can really hinder a relationship quickly. Never knowing what is going on in their head while you're hospitalized can drive you nuts. Thinking you might be holding them back from living a real life is depressing. It gets rough sometimes.

Even so, having someone to hold your hand while you're hooked up to a ventilator and look like hell, is amazing. Having the right person be patient with you in order to be intimate is reassuring. Recognizing that there is nothing that will bother them because they only care about your well being, is so nice. Having them there when you wake up from surgery couldn't be more comforting.  Their help reminding you about meds or treatments makes things go so smoothly. The perks of having someone to be there for every coughing fit, every "accident", every pain, and every hospital stay is such a great feeling that I am so happy to have in my life.

So even though all of these things are terrible in that respect there is always a sunny side of things. You simply need to figure out what your positive spin on life can be and twist it into a smile!

Always Smile,
  Sandi

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Comfort Zone

Comfort can mean many things to many people. For me comfort is a thin line between home and the hospital.

Crazy right? I know it is, but sometimes I feel when my life starts to get over loaded and I need to wind down, I end up in the hospital. Part of my brain thinks it may unconsciously be physiologically prompted.

 

When I am in the hospital I am taken care of. My room is cleaned every day, food is cooked and brought to me, meds are always on time and never skipped, there is no real worry when you are hospitalized for a clean out.

I think back to when I was in California I was busy busy busy, homesick, and unhappy in my relationship. I was also in and out of the hospital more so than I had ever been before. That is also where I contracted several CF bugs along with having a pulmonary embolism. I must say I was very mixed on my emotions and feelings at that time in my life.

I start to think about young girls who are cutters for a pain release to help with depression and all that comes with it. Alcohol never worked for me because I don't absorb it correctly. I refuse to do any kind of drug due to the prescription ones I am on. Too scared! 

So, I think I may have been putting myself in the hospital back then for weeks of torture. To have some type of pain and emotional release with constant IV's, blood draws, and blown veins. At that time I did not have a PORT so I had to have mid lines and straight sticks for blood draws. Constantly receiving pain, but at someone else's hand.

I guess in a way it was my drug, release, and way out. It is crazy to think back and look at it like that for me.

Luckily, I guess, I can honestly say I no longer am in the position that I feel the need to do that. I am happy, home, safe, and pleased with my life.

Now, I just wish my body was as healthy as it was back then. At least then if I wanted to cry wolf, I could instead of being super sick all the time.

Maybe that is karma kicking my ass for not being as sick back then and taking advantage of a situation. Who knows all I know is I have never mentioned this before and it is actually nice to put it out there in black and white.

I understand cutters, I am just not brave enough to do it myself. Not sure if that is a good thing or bad. I know I can relate to depression and confusion. I completely get it when people have no idea what to do so they run. I ran! Many times perhaps not to the right places but I ran. I get it!

Not Running,
  Sandi

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Shopping Smart

It has come to my conclusion that people like to group people who need assistance as "lazy", "liars", "scamming the system", or "looking for a hand out". Of course there are others but I'll stop there. These label's sadly make sense to me sometimes.

This morning I woke up and saw a friend who posted a sad article about a insanely obese woman complaining that she was as unhealthy as she is because, she "could not afford anything but junk food living on government assistance." Now, I know this is just a ploy for this woman. However, her alone makes "us" as a whole look bad. I stand behind the argument that not ALL people on assistance are scamming the system and the fact the you do not know the full story behind someone's situation. Yet, this ONE woman will make the mind of thousands think poorly of all who recieve benefits. 

Now, I have already written a blog about the importance of not judging someone who is using an EBT card. This blog is to simply explain that NO, this woman is 100% wrong. This is my way of debunking the horrible stigma behind using government funds and junk food. Read it here

I recieve $172.00 each month for food. Honestly if you know that a Cystic is supposed to eat double the calories of a "healthy" person then you know that is no where near enough for me to buy a months worth of food to keep me healthy. However, CF aside this is what I get.

I went to Wal-Mart and did my shopping. I was able to get; fruits (fresh and canned), veggies (fresh and canned), bread (Italian and buns), cheese (shredded and sliced), eggs, hamburger, bacon, hotdogs (all beef), cocktail shrimp, pre-made hamburger patty's, rice, soda (Mt. Dew and Pepsi), snacks (sugary and healthy), cereal (not sugar filled),  yogurt, taco makings, salad, and wheat pasta. I was able to buy all of these things and still have $7.24 left on my card.

It is not impossible to shop and get healthy foods. It is also possible to buy good quality foods and not just eat a crap quality of meats and other foods. The thought that you can't get a decent amount of food or a healthy amount of food is absurd. You just need to shop smart and ration what you eat.

If your "health" was that concerning to you, you would find a way to eat right with what you are given.

Shaking my head at stupidity,
   Sandi

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