It makes me angry...but I am grateful!

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Kas0283
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/11/2010 2:48 PM (GMT -7)   
Well, this is my first time posting in this forum (new member). Maybe you would like to know my story...I am a 26 year old mother and wife diagnosed with Lupus. Two years ago, I became ill, thinking it was the common flu, I went to the doctor to get some antibiotics. The visit did not quite go as well as I had planned. I could barely breathe, my chest felt like I had the world on it, my feet and hands (even ears and nose) were blue, I had a rash on my arms and legs, my joints were in constant pain, I had a headache that I just managed to live with, and I was in for a rude awakening! The doctor looked at me and asked if I had Lupus...what is that? I was soon educated! I was shuffled between labs (I think every vampire in the hospital had a vile of blood!), and I was sent to consult with a rheumotologist. After a month of feeling awful, I was finally able to function again. I put Lupus on the back burner, and quit going to see my doctor regularly<--Big mistake.
 
Well, this past week, all the symptoms have been revived. I went to my doctor today...and here I am again, facing the demon that is inside my body attacking it. I became angry, very angry. At times I feel left behind. I WANT to hang out with my friends like I use to, go sit in the sun for hours, enjoy the cold weather, play without getting tired, be intimate....enjoy life. I gets hard seeing those healthy around me. Do I want to take medications everyday? No!
 
Although I get angry at times, I have found Lupus is my biggest strength. It does not dictate who I am, it is just a small being that I must live with. It has pushed me to accomplish things never thought I would do. I am now finishing my Bachelors in Business and being the best Mother and Wife I can be.
 
It is hard living day to day not knowing how my joints will feel and not being able to make long term plans, however, I have love and support.  
 
I am going to live, love, and laugh....however, there is an extra L I must live with....Lupus....It is not who I am or what I am...it is just a small particle that gets in the way at times!
 
~*Kas*~

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/12/2010 4:53 PM (GMT -7)   
Hey Kas!! Welcome to HW! SO glad you found us. You my friend, have just said exactly what I feel for the most part. I am a little younger than you and its is truely the hardest thing to see your friends so healthy and living life to the fullest and here we are having to be extra careful not to overdue it so we don't pay for it for weeks and risk the possibility of hospitalization.

You are right, Lupus has made us realize that we are fighters and to cherrish the little things in life to a day of little pain or even able to complete a day without falling asleep in class or at work from extreme fatigue. Thank you for your post, it was a great reminder to me!!!
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran


If God brings you to it, he will get you through it!!

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 8/13/2010 5:57 AM (GMT -7)   
Welcome to our forum Kas. I'm really sorry lupus hit you at such a young age. My symptoms started in my early 40s and I felt the way you do now. I was in a high power job and exercised regularly. I loved to go to our pool and bake in the sun like an alligator, travel, etc. Three years after diagnosis I went on permanent disability. Psychologically my biggest hurdle is not knowing what each day will bring. Sometimes I just ignore lupus and go out anyway. There is a whole line of clothing that blocks the sun (check sungrubbies.com or coolibar. com) and I have a swim suit that is pants and long sleeves. Don't forget to buy a wide brim hat too.
 
It's great that you have your bachelors out of the way. I know you'll want to spend lots of time with your husband and children. The best way to stay healthy is to see your rheumatologist regularly, tell him/her of anything new, and take your medication. You have a much better attitude than I did when diagnosed. Keep it up! Love, Butterflake 
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease. Cellcept and lots of other meds.  Donna 

Kas0283
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/14/2010 8:59 AM (GMT -7)   

Thank you for the warm welcomes. As you stated it is hard to deal with at times. This past week, and even now, I am having such a hard time taking deep breathes. At times, it feels as though I am suffocating. I go back to the doctor Wednesday for my blood results, hoping everything will be ok.

I found it really hard dealing with this whole disease yesterday. I went to dinner with a friend of mine, and afterwards she wanted to go walking around. I could not because I was sooo tired!

So far, the sun has yet to bother me, but then again I stay out of it as much as possible. I do have Raynauds, so the cold weather really gets to me and so does the heat. I swell up like a balloon. It is hard for my body to adjust to temeratures.

 

~*Kas*~


jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 8/16/2010 2:43 PM (GMT -7)   
I agree, we are not our diseases but they are part of us. I just wish that more people could see us for all the strength that we have to put forth everyday. I usually try to live each day as fully as I can but today, it is extra hard. I just got the call from my MD and my latest ANAs are showing signs of progression. Where is all these stories of remissions and periods of no symptoms in my book? Tomorrow will be a new day and I will race into it with the determination that I stirred up this morning when I hobbled out of bed trying to walk off the night's cramps and aches. I will smile again now, just because I know that I have to. And it will make me feel better. I am so glad that I found this site because reading all of your stories and questions have really made me feel like I am not alone in this. God bless you all and my hugs go out to each of you.
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