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Abandoned

A|bandoned…20150301_103038-1

I live with a disease that is so common yet no one knows exactly what it is. My disease affects 1.5 million people in the U.S., but still there is no cure. So what do you do when you feel all alone? Or when your body becomes infection prone?

What happens when your fears become reality and no one is there to encourage you? I lie weeping in bed, barely able to lift my head-or anything else for that matter. Joint pain, muscle spasms, and extreme fatigue. Silent cries and silent screams as the pain begins to seemingly rip me open on the inside, right at the seams.

What is this life that was given to me? I didn’t ask for this disease.

Abandoned by friends and family. Left confined to the four walls of your bedroom. Isolated in your own home. Frequent invitations turned into “oh no she won’t be able to come.” Plans made and then inconveniently broken. I know they hate it. I hate it. I know they wish things would go back to the way they were. I wish they could too. But no words are ever spoken.

A|bandoned…

It can get really lonely sometimes. Often left alone in uncomfortable hospital beds, relying on physicians with cold to the touch hands, resting IV’s in arm, and needles poking and prodding your fingers and shoulders. It gets lonely sometimes. No one to share these thoughts running through your head. Insomnia and depression takes over you as you toss and turn in your bed. What is this?

A|bandoned…

Before there was a raging war taking place on the inside of my body, and before I was considered your not so typical 26-year-old, I was normal. I had plenty of friends and I never had to cancel any plans. Post lupus, I can count on one hand the amount of people I can now depend on. Lupus has taken away my sanity. It has taken away my will to live freely as I am controlled and forced to live by the way I feel daily…

Abandoned

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12 thoughts on “Abandoned”

  1. First off I know you don’t know me I found your blog while adding tags to mine and this blog post caught my eye…
    My name is Suzette I have had this site since around 2010 but forgot all about it until last year I believe lol..
    Anyways I also have Lupus and a host of other health Illnesses I find everyday to be one heck of a struggle I know that I am probably a lot older than you (45) but I just wanted to tell you that you are NOT ALONE gurl!!!!
    I have lost who I thought were friends I have lost some of my independence I have lost…but I found on here followers that I call friends…
    I am an open book about my whole life and everything in between so I am reaching out to as a follower as I will follow your blog and maybe when you want we can talk and well you just never know become friends…If you want to just cry on my blog I will be there for you…The door is open to you..
    Prayers and soft hugs to you sunshine
    Suzette

    1. Suzette you have absolutely no idea what you writing this comment means to me. I often do feel alone because of the fact that my friends and family can’t relate to how I’m feeling because the don’t live with the disease I battle on a day-to-day basis. And I agree with you. I’ve lost friends and have picked up some awesome friends here that I otherwise wouldn’t have met had it not been for starting up my blog. Thank you so much for extending your hand, your friendship, and your willingness to listen. Thanks for following my blog. I will be sure to return the favor :)

  2. Hey Sunshine!!!
    I need some help I think lol…. I got your comment on my phone from you and you are such a sweet heart ..BUT I have tried everything to follow your blog and it will not let me at all.. it comes up as server not found????… and I only see your comments on my phone… even though I am on my desk top computer…Do you know what is going on?? or how to fix this??
    Hugggggs to you
    Suzette

  3. Awwwww I got it to work hun!!!!
    so not to worry I am following you now : ) >>>Me doing the happy dance lol
    Well if I helped to at least bring a smile to that beautiful face of yours then I am happy too…Or if it made you at least not feel so alone then I am happy to..like I said YOU ARE NOT ALONE!!!!
    I am so glad that you accepted my hand and friendship and that means a lot to me..
    First off let me look around your blog site and get to know you even more then I will be right back k gurly gurl…
    soft hugs to you
    Suzette

  4. Yeah it’s me I am back lol
    I really enjoyed looking around your blog gurl… very inspiring and the effort you put into your blog is amazing as well…
    I am sorry to hear you lost your family and friends too It’s sad that because if you don’t have the butterfly rash (at the time) they all think oh your fine she is just pretending or I got she is just depressed and needs to get out of the house..Or there is nothing wrong with her she is just lazy (I’ve worked all my life) never been lazy a day in my life…and the ones that will call up say my dad and ask oh how is Suzette and he will start to tell them how sick I am they will either start talking about something else or tell her I said to get to feeling better fast…lol Now they don’t even call or ask one reason is since my mom died dad had enough of the shitt from mom side of the family and how they treated me even way before Lupus even as a kid like an outcast and to make a long story short he was just done with them all and so was my better half he has CVS and I was past being done so we are much more happy with that negative energy out of our lives ..They were the type everything is so much better for them the term rose colored glasses that the mother looks through all day and night lol how better off they are then us I am sure you know the type of people that I am talking about…..
    But even dads family don’t get it at all and dad explains what he knows we tell them to look it up on the computer if you are so concerned but of course they never do and they sometimes ask but they just say hope she gets better soon….
    Yes the day to day shitt….OMG!!!
    My hat is off to you gurl you have a child to take care of from what I read.. I can hardly take care of myself… How do you do it all????
    I find it hard to make it everyday to be honest the tiredness the pain the nausea all of it….Speaking of all this I have a doctors appointment tomorrow with the pain dr and the rheumatologist in Dallas 60+ miles one way… I am about ready to fire my rheumatologist she is not helping me at all…I only see her maybe 10 minutes and she just said it’s your Lupus or fibro nothing more I can do..She hasn’t checked my organs nothing like when I fist seen her that was over 6+ years ago and I am having lots of problems so we will see more tomorrow…IF I end up in jail for smacking her will you bail me out lol..jk
    there have been so many times that I should have been in the hospital but I just laid sick in bed and still sick today..any advice you can give me like what to ask her or anything gurl?? I am lost with her…
    What do you do on your worst days? how do you handle it? do you get any help with your lil one? how old is she or he??? you have a guy or gurl to help???? If I get to personal just tell me to shut the hell up lol.. I will understand.. I am an open book so ask away if you want…and if your to tired to write back since I wrote you a book just take your time gurl…
    Yes I am thankful to the friends on here..if it were not for them and you I wouldn’t have any in real life…ok tell me about your hell now and how you deal and family…
    Remember your not alone….See I am here…for you… I do get sick and not able to get out of bed at times but either way I will check WP to see how you are holding up ..
    Huggggs to a beautiful person inside and out
    Suzette

    1. I’m glad you liked the blog. But as far as friends, you gain some and you lose some. I can count on one hand the amount of good friends I have. And most of the time I don’t have the butterfly rash so yes sometimes my family do believe I’m making it up or feeling fine. But I’ve learned to live in my truth no matter who likes it or not. I have a part time job right now. My employers and Co workers know that I have lupus and are surprisingly more supportive than my real family and friends. They help me with tasks I can’t complete and they fill in when I just cannot make it out of my bed. I’m sorry about your mom. I can’t even imagine. You and your father are strong! As far as taking care of my little guy. I have an amazing gf, mother and grandmother who help me out tremendously on a day to day basis. Without them I have no idea how I’d be able to do anything. It’s all about having a great support system. I Hope that your doctor’s appointment goes well tomorrow. Wow 😮 60 miles each way is crazy miles to travel to see a doctor. Throughout the 4 years of having lupus I’ve fired a dozen doctors. Sometimes you have to go through a few doctors until you find the best fit. And I feel really good with my team of doctors. Fingers crossed that you won’t smack her. I don’t think they have well equipped doctors in jail. Lol. But if you aren’t feeling well tell her that you think she should order more tests. What if it isn’t lupus or fibro? What if it’s something else? How would you or she know if she doesn’t order tests and blood work? On my worst day I lie in bed literally all day. I don’t move and I blog for days. My gf is a great help on my bad days. I appreciate her. My little guy(my son) is 7 and he loves to be mommy’s little helper. He’s such a sweetheart.

  5. That is so true about friends …I can get the rash on my chest and face I had to do injections on my chest since it got so bad but so far for a lil while now no rash on my face or chest..Yes it is your truth our truth ..That is amazing that the company and workers help you out when needed and understand that is great i am happy to hear that .. that is hard to find in this day …thank you yeah mom died 6 years ago and then dad had an accident and just had a triple heart bypass so I have been taking care of him for 5 years my house is down the street lol but haven’t been home since he can’t be left alone and I am disabled from an accident but my guy is great and he does so much for us..so it sounds like we have great people that love us : ) I am happy to hear you have a girlfriend that helps you and your son and mom all that is wonderful you are really blessed…yeah I live out in a lil town in the country and the special dr are in dallas so it sucks big time…yeah I will know more tomorrow on how I feel about the dr if she said the samething its just lupus and fibro I won’t slap her since like you said no good dr in jail lololol.. I will just have to try to find another one I just know something else is going on due to how sick i have been for way to long..I’ve been in bed so long that I want to cut it up with a knife lol my better half hates it to and he’s not in it that much not like me lol
    awww 7 is such a fun age I ‘am sure he is your biggest supporter and helper …well as long as we know the truth and we know how we feel day to day and that we do have some helpers then even on our worst day I guess we are still better off then some… we have there love and help…I know we are still sick and hurting and not able to have a life (me) we make the best of it so that is really all we can do…we hang in there the best that we can…that is what I say when friends ask how I ‘am doing I say hanging in there
    I want to thank you for the well wishes too… it is a rough ride and long I go once a month for sure but this time I have to see 2 drs..I know I will get my results from my MRI of my neck so that is good but I also need to see other drs cause I can’t do this much longer…
    well my sunshine I am going to eat a late dinner almost done but then get things ready for tomorrow and rest some….but I want you to remember that you are not alone and If I can’t sleep I will be back lol but really your not alone I will try to be here as much as you need… I am happy that we are talking on here and getting to know each other…ok I have to get moving I am hurting and pain is no fun you know that but again I may be back at any time I am good like that lol
    Huggs
    Suzette

    1. Yes I am fortunate to have a great boss, co workers and support system. And you’re right, it is hard to find these days. You’re definitely a tough cookie to be able to take care of your dad as well as yourself all while dealing with lupus and fibro. That’s true definition of a lupus warrior. I hope that your appointment goes well today. Most likely, when you’re feeling as bad as you do, there almost always is a reason for that. Hopefully the both of you figure that out today. And yes 7 is a fun age. He is such a great help and so supportive. He attends all of the walks with me, he tells all of his teachers and friends about his mommy who is a super hero. He makes me feel so much better. I like to say that I am better off than some, that’s actually what motivates me to keep on. I too try to hang in there and make the best of the life I have been given, even if it is limited.

      Hope all goes well. Hope the ride back home isn’t as long. And I hope that your results come back great for your MRI.

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