4,000-5,499 SparkPoints 5,163

A promise to myself

Thursday, March 01, 2012

Since being out of the hospital, I have had a harder time adjusting to home life than I thought I would have. Things have been an emotional roller coaster and I’m not too sure how to process everything right now. I’m not too stressed about the large weight gain I’ve had, because I know it’s from all of the new medication that I’m on and at the current moment, there’s nothing I can do about that. I think the hardest thing that I’m having the hardest time adjusting to is the fact that I can’t do simple things as easy as I use to. For example, walking. Walking was never a hard thing to do. I found it to be easy; actually, too easy. So easy that I never really considered walking to be cardio exercise because it doesn’t get me sweating enough. The first disaster happened the morning after I got out of the hospital. I decided to go to the grocery store with my boyfriend. I figured I could handle it. How hard could it be to walk and push a cart? I didn’t have to walk fast and I had the cart for support if I got tired and needed to lean on something. I walked into the grocery store optimistic. By the time we left the grocery store, I was bawling like a baby. At first it was okay. But then I started going into a coughing fit, which was making it hard to breathe normally and hard to catch my breath. We didn’t even walk around the whole grocery store, nor were we in there for 10 minutes before I literally couldn’t walk anymore because I couldn’t breathe very well. Something as simple as a grocery store broke my positive moral because it made me face something I didn’t want to see: I’m still sick.

So after that disaster, I figured that I didn’t want to go anywhere else for awhile but ended up going to Wal-Mart the next day. I remember before I got sick, I told my boyfriend that I didn’t care what happened to me, I would NEVER EVER EVER EVER use one of those motorized carts that people use sometimes in Wal-Mart. I always thought they were slow and obnoxious and I didn’t want to be “that person” blocking the aisle or “that person” moving so slowly that people get impatient and make nasty comments. So when we got to Wal-Mart, I actually spent about 4 full minutes arguing with my boyfriend because I demanded him to push me in the wheelchair because I refused to use the electric one. Yes, I know it’s probably childish, but I had a little too much pride to surrender to the chair. In reality, it didn’t really matter which chair I used. People still stared at me and I felt embarrassed. When people would look at me, the first thing they’d look at were my legs. On the outside, it doesn’t seem like there’s anything wrong with me. I pretty much just held me head in shame the whole time. I know I have nothing to be ashamed of, but I just felt horrible. Completely horrible.

When I was first diagnosed with Lupus, I had fluid in my lungs and around my heart, so it’s not like I’ve never had this whole breathing thing to deal with. I just don’t remember how I coped with it because that was nearly 4 years ago. I was more distraught over the fact that I was going to miss cheerleading tryouts for my senior year in high school, I didn’t care about breathing. But now, with my weight loss goals and other life goals, I have no choice but to acknowledge it because I have to overcome this time in my life. I have to be kind to myself, accept the cards I’ve been given, and keep moving. With that being said, I promise the following things to myself:

1. Be patient with myself. I didn’t get sick overnight so I’m not going to get better overnight. Rushing this process is not going to benefit me in any way. My journey is not a race, there really is no finish line or time clock. As long as I do what I can, everything will work out as they may.

2. Stop comparing my situation to others. This is a big thing for me. When it comes to things like weight loss and such, I look at how people do things and think that I can do the exact same thing and get the exact same results. I could do that if I had the exact same body, which I do not. Everyone’s journey is their own personal, unique thing and no one’s will be exactly the same. I have to worry about my own situation, limitations and ability and work with what I have.

3. To realize 100% that I am a HUMAN, not a bionic cyborg. I have this mindset to where I can do anything that I want to do because it’s “my life and no one controls me and my destiny”. Problem is, with Lupus, you are not always in control. When I get sick, I act like it’s no big deal and I don’t give myself time to recover. I jump back into whatever I was doing (which usually ends up to be pretty bad in the long run). I have to realize that I only have 1 body and 1 life and I must take care of it. If I’m sick, I need to slow down. There’s nothing wrong with a challenge every now and then, but I need to do a better job at listening to my body instead of thinking it’s a “sign of weakness”.

4. To stop worrying about what other people may think about my disease. When it comes to me being sick around other people, as I stated before, I always act like it’s not a big deal. Lupus is a very big deal. It affects a lot of healthy tissues, joints and organs for basically no reason at all. A lot of the time, I hide the fact that I’m sick because it’s so difficult to explain it to people and have them understand. You can’t visibly “see” what’s going on with me. It takes a ton of blood work, cat scans, MRIs, biopsies, and other tests to figure out what’s wrong with me most of the time. It’s not like I can turn my body inside out and let you view the damage that my disease has caused so far. Whenever I say anything dealing with my pain, such as chronic fatigue, arthritis, or random muscle pain, the first thing people think I’m doing is complaining and think that I’m “too young to experience those kind of aches and pains”. Please know that diseases do not have age limits, do your research people. You know how awkward it is to tell my friends that I can’t hang out at the mall with them because my arthritis is flaring up? It makes me sound like an old woman!

5. Lastly, I will accept my life as it is and deal with it accordingly. This is the biggest promise of all for me. April will mark 4 years since I’ve had Lupus. Despite having it this long, I’m still in denial that I have it. I still feel like I’m in the “why me” phase. I don’t smoke, I don’t drink, I don’t do anything reckless and out of ALL the people in my family, I’m the only one who has this disease. It’s tough going from the healthy rah rah cheerleader to the sick girl. The hardest part of all is that I actually lost friends because I was sick, simply because I was like the pink elephant in the room. My ex friends felt they couldn’t hang out with me because I had so many new limitations and it was “interfering with their social circle”. There are a lot of different emotions that go on with new diagnosis, especially when you have to go through most of them alone. I think one thing that I’ll definitely be working on is accepting that I am sick. Yes, I have Lupus, but it doesn’t define me. I’m still the person that I was before I was sick, if not more bossy, dedicated, and determined. I just need to take every day a step at a time and live life instead of sitting around pondering why or how my life resorted to this. My Lupus isn’t going anywhere, so I may as well embrace it, take care of it and move on. I will no longer treat my life like a battlefield, where I’m constantly at war with myself; fighting over what I used to be able to do and trying to force my way backwards. I’ll just continue to move forward, be positive, and live.
Share This Post With Others
Member Comments About This Blog Post
  • ALYSSA40
    This was a major blog for me to read. We've just become friends so when you said you were in the hospital for your birthday, I thought "Oh, I wonder what's up?" Bless you girl! You have a lot in this blog that makes me admire you SO MUCH! I thought I was whining about my BP being high one day and down another or how my weight goes down but my belly flesh is STILL there! Or how I'll never be able to afford that boob and belly lift when here you are, your body is fighting against you!

    I suffer from Hashimoto's Disease, which affects the thyroid. So I lose and gain weight all the time, causing my life a lot of frustration. I get migraines, fluid retention and other issues that are more on the major side but my meds pretty much work for me. I thought I had a tough time when I was diagnosed at borderline hypertensive. But Lupus is a card that I thankfully haven't been dealt. My heart ached when I read this blog and I am praying for you NUMBER ONE

    NUMBER TWO, I will be staying in contact with you for real- I'm your personal cheering section and looking to share the journey with you. Together we can get you back on your feet and through this time. It's no race, like you said but it is a journey that you don't have to walk alone or with only a few friends.

    Good luck to you, many blessings and prayers to you and have a great birthday!

    2239 days ago
    You have a great attitude! I am glad you are not letting your lupus get you down. Take it slow and you will heal.
    2246 days ago
  • MIQUEY73
    I believe you will figure out how to work around the limitations and be successful.

    I hope on those days that you feel down that you come back to this blog and remind yourself of the promise you made to yourself.

    2246 days ago
    I'm so sorry you've had these challenges but it sounds like you are getting your head on straight - your blog reminded me of the title of a book by Terry Cole-Whitaker called "What You Think Of Me Is None Of My Business" - and she's right, we need to just ignore what others might think and follow our own path. Sounds like you are heading in the right direction and you have tons of love here!!
    2246 days ago
  • SHERR513
    God bless you! Keep your head up high and doing what your doing your an amazing person and don't think other wise. If they were really your friends they wouldn't have turned their backs on you. You are loved!! emoticon
    2246 days ago
    I can definitely empathize with what you're going through especially because my mother also has Lupus. It's a daily struggle for her to do things that other people usually overlook. You are in my prayers and I just want to encourage you and let you know that God won't fail you. You may have to find different ways of doing things but I do believe that you can do anything that you set your mind to. Be encouraged! emoticon emoticon emoticon
    2246 days ago

    Comment edited on: 3/2/2012 10:42:17 AM
    i am so sorry this has happened to you. We can never really understand God's plan for each of us, but inspite of your medical issues I think you are correct-you need to live the best possible life you can.
    If you have discoverd new limitations, find ways around them, but never give up the fight for your life and your happiness.

    God does not make mistakes, you are His daughter and you are perfect.
    I wish you the very best in your journey,
    2247 days ago
  • Add Your Comment to the Blog Post

    Log in to post a comment

    Disclaimer: Weight loss results will vary from person to person. No individual result should be seen as a typical result of following the SparkPeople program.