This blog goes out to all whom reads this and can empathize with how very frustrating it is being a young woman in her mid 20's with Lupus. It's been a while since I have actually sat down and fell well enough to write in my blog, but I find myself tonight being not able to sleep ( a very common occurrence in my life these days). Every night I have trouble sleeping , I'm not truly sure the cause of this, it could be an array of things that keep me from sleeping. For example it could possibly be my medicines, the pounding migraines I often get, the constant itching fits, the hives/welts, painful skin lesions, escrutiating pain in my stomach, ,nausea, the painful and stiffening inflammation in my joints, the sore bumps on my head I sometimes get or possibly it's the fact that I feel restless a majority of the time yet don't have enough energy to really do anything that seems to matter. It could be that at night when I go to lay my head on the pillow, I just lay there worrying about all that weighs heavy on my heart. I constantly worry about all the things that I have been unable to accomplish during the day, and the fact that all the things I want to accomplish appear to be getting bigger with every passing day and are seeming to be mounting up to become impossible tasks.
I'm not sure if anyone actually reads this, but I know that just being able to vent out how I feel, helps allieviate some of this anger and frustration that i feel inside of me.
I hate this disease!!! I once heard in this really excellent PSA announcement by the the Lupus foundation of America , where one woman makes a comment about how she feels that Lupus is a disease that is robbing her of her present and she's terrified of it stealing her future. This to sum it up is how I am lately feeling! Lupus isn't a new disease to me , I've been dealing with it and it's effects in my life for some time now. I've been battling it for over 8 years and before that I fought it with my sister's diagnosis for 7 years, until she lost her battle to this disease at the early age of 24 .
I have always approached having Lupus in a positive way , not allowing it to put me on the sidelines of life, but recently after gaining over 4o lbs because of the massive dose of prednisone, I find myself getting angry and frustrated beyond words. I am a woman of strong Faith in God, I have seen Him use hardships in my life as stepping stones to great blessings . But I have to admit right now I feel like I'm at my Witt's end. I try and try to get better, and just when I feel like I'm finally getting somewhere I end up getting sick again, and I'm back to square 1 again.
You know it's like taking 5 steps forward and then you end up going back 10, and then your even worse off then when you began. I NEED HELP!!! I'm exhausted of living like this!!!
Tomorrow is my birthday, I'll be 27 years old. I can't believe it!!! I always thought I would be much further along in my life than where I find myself. My biggest accomplishment is getting up and not feeling like crap, and possibly accomplishing at least one thing on my to do list.
I always thought that by now I would have traveled more of the world, finished my masters degree, lost the weight that I have always battled, been married, started the orphanage, maybe even began my own family.... but NO, none of these things have happened yet. I don't understand why everything has to be so hard for me.... I feel like I'm trying to dig myself out of a sand pit, the harder I try, the deeper I seem to fall. It just doesn't seem fair, some people have perfect health, yet have no idea what there purpose in life is, i on the other hand know exactly why God created me and the purposes He has placed on my life to fulfill. I do count my blessings through all of this, and I know there could be worse things in life, but where my frustration stems is that I just want to fulfill the purposes that I was made for and the disease is my biggest obstacle.
I know there is this expression that says, the hardest of trials go to the strongest of character. I do believe this expression and do acknowledge that having this illness has made me a stronger person, in my faith and character. But at the same time it just doesn't seem fair! I'm not someone who wants worldly things, I've never asked for fame, beauty, or lots of money or the things that most people strive for everyday. I just want to be healthy, not to have to deal with the constant health obstacles of Lupus, so I can accomplish the desire of helping others and making this world a better place.
Like I said before I'm at my Witt's end!!!
Trying to keep my head above water! Sincerely, Coolbeans
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6 comments:
Hiya Cool Beans ... thanks for the email. I've added you to the LFA blog. :-)
Hang tough ... there are resources out there. You might want to check out the LFA message boards. http://www.lupus.org/messageboards
Lots of folks are there who can offer you support, encouragement and understanding.
And happy birthday a day early!!
best, Wick
LFA
hey there coolbeans..... I came across your blog thru the lupus foundation pages.... I was diagnosed with lupus when I was 21 and I am now 35! Sorry to hear that you are frustrated and worried and all the emotions that lupus entails ... i certainly can understand. One bit of advice is to try to relax and not worry about what you can't do for whatever reason..lupus thrives on stress so please try not to feed it... it's hard I often have to remind myself. i will read your blog promise and give any advice or shoulder you may need as best as i can. please know you are not alone and someone is listening (reading). if you are able to see my email address feel free to use it but it's okay if you would rather just blog. Remember Hakuna Matata!!
Bernadette
Im a 30 yr old mother that's lived with lupus for 6 yrs and its been hell. Lupus Sucks is all I can say....
Happy Blogging
Chronic Chick Talk
Hi coolbeans, pleased to meet you,I am a 27 year old living with lupus for 3 years now.just like you i sometimes get frustrated but also just like you i am taking a day at a time.Anytime you need a friend i will always be here.Big hug all the way from Malaysia.xoxo
Hey cool beans, I am a 20 yr old college student in California. I was diagnosed with lupus right before entering college. It totally changed my world; all my plans were turned upside down, it was very depressing for a teenage girl who just wanted to leave the nest. Now I'm learning to enjoy life at a slower pace and savor the small victories (like when my doctor decreases my dose by a milligram ;p) Be strong, you're not alone, and I hope to get advise from you as I continue my journey with lupus.
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Writing from Texas.
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