Friday, September 3, 2010


A Letter Written By a Lupus patient who apperently ended up Losing their battle with Lupus by Kym Tomlinson-Ryan on Thursday, September 2, 2010 at 9:09pm (just yesterday)

A letter to be shared with friends and family by Theresa Stoops in Florida

WHAT YOU SHOULD KNOW ABOUT ME My pain - My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability

My forgetfulness - Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.

My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.

My uniqueness - Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,I have shared these thoughts with many "Lupies", as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine -- Do not judge them as you may Not know their Inner pain.==== And always remember I LOVE YOU! ====


Naeemah said...

I normally do not read blogs or scour the internet on social network sites. Your blog fascinated me but more importantly it educated me to a certain degree on Savella which was given to be 3 days ago to help treat my Lupus. I was diagnosed with this disease in August 2009 but had symptoms since 2004. With 4 children, a career as a Controller making $75K a year and helping to run my husband's home improvement business, I made excuse after excuse as to why I was feeling what I was feeling. Today I am as a stage where it is hard to control this pain as I can't really explain it or give it a number on a scale. I played varsity basketball in college so spraining an ankle or dislocating a finger was the norm for people in my circle. I explain my pain to many as like having a sprained ankle all the time but 10 times worst or my exacerbation as being reallt sleepy but 10 times worst than that. I went to a pain management specialist on Monday and he subscribed oxycodone for 15 days and Savella for 14. Ok, this may be a step in the right direction but the Savella makes me paranoid when I read about the side effects and the Oxycodone is giving me a false positive when the pain dissipates for 2 hours and I cannot take another for pill for 6 hours.

Please believe me, I am not one to complain. I am a Christian woman who believes that God has blessed my life greatly even with the diagnosis of a disease I consider impossible to treat effectively. As a type this comment, my fingers are aching and my back is painful. The difficulty in treating this disease is that there is not one person's symptoms the same. I have been switched from pain medication to pain medication to pain medication.

As my mother has always told me, "that which does not kill me will make me stronger."

Stay strong and keep the faith!

PoCo JO said...

Thank you so much for your response. It has really touched my heart. I am so thankful that my posts regarding Savella has been educational for you. I am completely open to discussing medication regimen at any time. I am open to any questions, etc. I am no expert, I am just another woman with Lupus and the overlapping diseases that go with it. Please do use me as a resource and if I can’t help or have any helpful responses for you, I WILL find the right answer for you. We just need to hang in there together. Take Care!

Ann said...

Very well written. I couldn't explain what my body is doing any better then you just did.

rose said...

Well I obviously meant to comment on this post, I am so sorry, I am new to a lot of things I guess. Lupus and blogging, lol..Anyway, as i said before, it helped me greatly, thank you so much for that post, it made me feel normal.