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New Member

Date Joined Jan 2012
Total Posts : 2
   Posted 1/10/2012 11:58 AM (GMT -6)   
I wrote down a few things that people often say to me or think about me and my disease because I was getting tired of it! Here goes:

I am not lazy. I have fatigue that is so debilitating that I cannot overcome it.

It isn’t “creepy” or “gross” when my fingers turn white or blue. It is called Raynaud’s and it is causing tissue damage that could someday lead to amputation of my fingers.

I am not a drug addict because I have to take a lot of pills. I am trying to keep the multiple symptoms of my lupus under control.

I am not limping because I “hurt my foot or ankle”…I have joint problems in my hips. When it flares up, I am unable to put much pressure on my hip, causing me to walk slower and with a little limp.

I do not cry because I am whiny, or a cry baby. I'm not just depressed, either. I am in excruciating pain, all the time. I cry because sometimes I just can’t help it.

I didn’t steal my grandmother’s handicap parking permit, I am legitimately a 23 year old, seemingly “normal” looking girl who has intense, energy-draining infusions of high powered immuno-suppressive medication that makes me feel like I have literally been hit by a train. Let alone the symptoms of the disease causing even more fatigue and extreme joint pain, along with muscle pain from the fibromyalgia. Also, the lupus affects my heart and lungs, which means I get very out of breath from walking long distances. So tomorrow I may park in the back of the lot if I am feeling well. But right now, I need to get my medicine. Stop looking at me like a criminal.

I am not faking sick, since I was fine yesterday. Lupus is a day-by-day disease. I may have felt good yesterday, and today I feel horrible. This doesn’t mean I am faking it, this means I have a cruel disease that is unpredictable.

I am nauseous almost everyday. This nausea is very real and quite severe. Please don’t ask if I’m pregnant. I’m not pregnant. I have lupus.

I understand that lupus is very complex, but the generalizations and stereotypes can get quite old for those of us who are suffering. Please be considerate before making judgments or thoughtless comments!

Forum Moderator

Date Joined May 2005
Total Posts : 7669
   Posted 1/10/2012 2:06 PM (GMT -6)   
Yeah, that's a letter all of us would like to pass around from time to time.

I'm hoping that the last paragraph is not meant for the Lupus sufferers on this forum...but I'm not sure exactly who it is directed at.

Be well,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 1/10/2012 4:50 PM (GMT -6)   
Excellent point made Hassled and I think the last sentence is aimed at the general public as the post is sort of like an open letter and I understand where you are coming from. I developed Lupus 8 months ago after going on Humira for Crohn's disease and have problems walking and with exhaustion and have just been given disability living allowance and am still able to work but have had to reduce my hours as the combo of the Lupus,Crohn's, arthritis, damaged neck discs, short bowel syndrome, malabsorbtion all fight me on a day to day basis and I need to eat 4000 calories a day as have had so much bowel removed that absorb only a quarter of what I eat so all my colleagues are on post Xmas diets and I sit there eating all high calorie stuff and they say I am so lucky. They don't mean it nastily as they all know my medical problems and know what I have been through and I don't take it to heart and say I would quite happily swop with them but funnily enough they all decline and say they will stick to their celery stick and keep their health. lol

I am getting my disabled parking permit in the post this week and will only use it when I need to but when I do anyone looks at me like i am faking and will more than happily explain why and then ask them to think before they make assumptions. Best wishes.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/10/2012 6:20 PM (GMT -6)   
I like your post.

There are days I feel almost human and days where I just want to sit in my recliner and rest. By the end of a long work day I'm too tired to clean house so it looks like I'm a slob. When I'm off work I'm still needing to rest so things sometimes still don't get clean. :(

I don't feel like I need the handicap parking yet, but there are days I wish I did have it.

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 1/10/2012 7:09 PM (GMT -6)   
You are so young and so wise. I am sorry that you have to understand all this. Hope you feel better, soon.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

Regular Member

Date Joined Jan 2012
Total Posts : 135
   Posted 1/13/2012 1:27 AM (GMT -6)   
I cried when I dead this. MISCONCEPTIONS - O YES I hear/feel/understand your pain!
And I'm so sorry this happened to you at such a young age! It's bad enough at ANY AGE but I seriously wept when I read this bc at least I was 35 & had a chance to experience SOME life, having 2 children (the last preg triggered the disease) & as hard as it is to take care of them...at leastvi have them - tho I fear I wont live to see them grow up.
Please do me a favor & get re-evaluated for proper pain treatment! I would want to not be @ without the pain control I get from fentanyl patches!
I am thinking @ u - my name is Angelina. Pls feel free to contact me at

Post Edited By Moderator (Lynnwood) : 1/13/2012 8:28:15 AM (GMT-7)

Regular Member

Date Joined Jan 2012
Total Posts : 135
   Posted 1/13/2012 3:20 AM (GMT -6)   
Oh & btw I like the SLE snuck in your User name - hasSLEd! You are 1 verrry bright girl & I personally think you should become a writer & document your experience! YOU CAN HELP OTHERS!
I would like to help ppl too

Post Edited By Moderator (Lynnwood) : 1/13/2012 8:28:44 AM (GMT-7)

New Member

Date Joined Jan 2012
Total Posts : 2
   Posted 1/14/2012 11:08 PM (GMT -6)   
Thank you for the kind words and encouragement. It's nice to be able to vent sometimes. :) And also I have been thinking about writing about my journey with this so I can help others, maybe it's time to stop thinking and start doing. Thanks!

Regular Member

Date Joined Jan 2012
Total Posts : 135
   Posted 1/14/2012 11:31 PM (GMT -6)   
YES!! Do it! You have so much to give the world! And it can be @ whatever u choose - even as generalized as PAIN! U GO GIRL! Angelina

Regular Member

Date Joined Jan 2012
Total Posts : 135
   Posted 1/14/2012 11:42 PM (GMT -6)   
Oh I forgot to mention something @ the nausea! Have u ever tried TRANSDERM-SCOP PATCHES? they are little patches that go behind your ear (often used for motion sickness when travel) & they work GREAT! They also stop excessive sweating which a lot of us suffer fro too. I used them for 3 .5 yrs but went off for awhile & going back on next month.
The other thing that helps severe nausea is GINGER ROOTBEER (nonalcoholic) - u can find it at Health food stores only but works WONDERS! Please keep on top of the nausea as your QOL (quality of life) will improve dramatically! Ang
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