Sorry I haven't posted in a little while. There was an unexpected tragedy with a family friend and we have been by her side since it happened. I will resume my posts soon.
Until next time...
xo
Sunday, November 14, 2010
Thursday, November 4, 2010
Inflammation & Immunity
All information can be found in and has been cited from; The Lupus Book (Fourth Edition) A Guide for Patients and their Families by Daniel J Wallace, M.D. (pg. 17-19)
Inflammatory and immune responses are responsible for many of the symptoms seen in systemic lupus. The body of a healthy individual is always on the lookout for foreign invaders that pose a threat. Hence, one's immunity.
There are many different components regarding one's blood supply. One's blood supply consists of different components, including:
Red Blood Cells (erythrocytes): responsible for the carrying and exchanging of oxygen. If someone has a low red blood cell count, they are suffering from something called Anemia.
White Blood Cells (leukocytes): it is these cells that make up the body's main defense system. White blood cells play a huge role in inflammation.
Platelets: it is one's platelets that are responsible for clotting blood.
Plasma: it is plasma that makes up the majority of our blood supply. Plasma contains lots of proteins and other substances being transferred to different parts of the body.
There are (5) types of white blood cells that have been identified all relevant to Lupus. The list is as follows:
- Polymorphonuclear Cells: Cells also known as neutrophils or granulocytes, which are made, and found, in our bone marrow. They circulate the blood for a few days which are then passed into tissue. 50%-70% of our circulating white cells are neutrophils (pg. 17)
- Eosinophils: These particular white blood cells make up 0% to 5% of our entire white blood cell supply. Eosinophils are involved in allergic responses. (pg. 18)
- Basophils: These particular cells don't have a defined function. Tissue based basophils are known as "mast cells". These cells fight against parasitic or fungal invasions to the body. They also play a huge role in allergy. (pg. 18)
- Lymphocytes: Gate keepers to our immune system. Also produced in the bone marrow, can survive up to 20 years. (pg. 18)
- Monocytes: The circulating blood component of the "monocyte-macrophage" network. It is these cells that are responsible for processing foreign invaders (antigens) and the destroying cells and tissues that are products of inflammation. Macrophages can be present in blood as well, however they are mostly found in tissue. (pg. 18)
This information is to solely be used as a resource tool for people living with Lupus and auto-immune disease. I thought the information would be an amazing tool for all of us :)
Talk soon...
xo
Monday, November 1, 2010
University of Athabasca
The possibility of achieving a post-secondary education seemed next to impossible after my health began to worsen. I was forced to withdraw from my program at a local university just a few short years ago. I never in a million years could have imagined that the opportunity to achieve my degree would have presented itself, especially with the numerous road blocks called my health. After explaining my situation to a student advisor at a nearby university, I was told about a credible, known university that is completely based on individualized and online programs. I was extremely hesitant at first, not knowing too much about the university. If I have learned anything at all, high schools aren't very accomodating to students with disabilities wanting to pursue a post-secondary method of study. It wasn't until 2 years after high school that I heard about this amazing opportunity. I went so long trying to fit my needs into the expectations of various universities, I never thought about having a university fit my needs. With the knowledge that things would always be a little bit harder and more challenging, I knew from the moment I spoke to my student advisor that this school was the perfect fit!
There are a few things you need to consider when registering for a program...
1.) Am I able to complete the suggested assignments, tests, and exams in a timely fashion without procrastinating?
2.) Am I ready to complete a course without deadlines?
The amazing prospects involved with the University of Athabasca begins to grow by leaps and bounds. Not only is Athabasca accomodating to students with disabilities, they are extremely supportive in wanting to see you achieve. I could have never found a perfect fit, even if I had dreamt it! One thing that really sold me was the opportunity to complete a course without deadlines. It became quite clear early on that I would not be able to attend lectures and classes on a daily basis due to my inability to sit or stand for long periods at a time, as well as the fear that I wouldn't be able to complete my assignments on time because I get acutely sick so often. No deadlines! If you are able to complete the course in an aloted amount of time, this is perfect for you!
What are some advantages to being a part of the students with disabilities program that is offered with the University of Athabasca?
1.) You are given the opportunity to utilize 3, 2 month extensions if needed without charge
2.) Each student is given the opportunity to apply for accomodations regarding the final exam. (This was the most important for me)
3.) Lastly, students with disabilities are given the opportunity to take advantage of helpful equipment to help achieve success in completing their degree.
For more information regarding admittance and tuition, visit www.athabascau.ca
You may also want to browse the different program offerings from both undergraduate and graduate programs. You can also go on to achieve your Masters in various areas of study.
If you have any questions regarding the University of Athabasca, don't hesitate to ask!
Talk soon...
Xo
There are a few things you need to consider when registering for a program...
1.) Am I able to complete the suggested assignments, tests, and exams in a timely fashion without procrastinating?
2.) Am I ready to complete a course without deadlines?
The amazing prospects involved with the University of Athabasca begins to grow by leaps and bounds. Not only is Athabasca accomodating to students with disabilities, they are extremely supportive in wanting to see you achieve. I could have never found a perfect fit, even if I had dreamt it! One thing that really sold me was the opportunity to complete a course without deadlines. It became quite clear early on that I would not be able to attend lectures and classes on a daily basis due to my inability to sit or stand for long periods at a time, as well as the fear that I wouldn't be able to complete my assignments on time because I get acutely sick so often. No deadlines! If you are able to complete the course in an aloted amount of time, this is perfect for you!
What are some advantages to being a part of the students with disabilities program that is offered with the University of Athabasca?
1.) You are given the opportunity to utilize 3, 2 month extensions if needed without charge
2.) Each student is given the opportunity to apply for accomodations regarding the final exam. (This was the most important for me)
3.) Lastly, students with disabilities are given the opportunity to take advantage of helpful equipment to help achieve success in completing their degree.
For more information regarding admittance and tuition, visit www.athabascau.ca
You may also want to browse the different program offerings from both undergraduate and graduate programs. You can also go on to achieve your Masters in various areas of study.
If you have any questions regarding the University of Athabasca, don't hesitate to ask!
Talk soon...
Xo
Never Give Up!!
I am SO excited, I cannot contain myself! After alot of hard work and determination, I finally got my marks back from my exam! I PASSED :) It has only proven to me that if you work hard enough, anything is possible. Before I started my Psychology program with the University of Athabasca, I was scared and skeptical. I really thought I could never do it. With the encouragement of my parents and my boyfriend, I decided to throw myself into the course full force. Although it took me longer than the average person due to unforseen circumstances, i ended up proving myself wrong! I passed my course with flying colors :) A 50% is required to pass the course, and although i didn't do as exceptional as i would have wanted, I did pretty darn good for my very first year as a university student. Considering all of the aspects of my life that were working against me, i did well! I finished my course with a 69%, and have enrolled to start again on December 10th :)
If any of you take away any message from this post, i would want it to be that anything is possible with a little bit of hard work and determination. I don't care how daunting it looks, it is possible! You have to be committed, and you also have to realize, and let go of the idea that everything needs to be an A. Although that is what i strived for, I am certainly not dissapointed in the grade I got. That's all I want for all of you - strive for the best! If you are unable to meet that goal, don't beat yourself up about it, it was SO hard for you to get the grade you did.. you should be proud of yourself!
I have to be honest, my first attempt at the exam - i failed. I was extremely down on myself, but.. it only meant I had to work harder the next time. With each course you take, you have 2 chances to achieve a grade of over 50% however if you do not achieve it the first time, you have a second chance. The second chance was all I needed, and the hard work paid off! I will discuss a little bit about The University of Athabasca for those of you who are interested.
Talk soon, and good look on your studies <3
xo
If any of you take away any message from this post, i would want it to be that anything is possible with a little bit of hard work and determination. I don't care how daunting it looks, it is possible! You have to be committed, and you also have to realize, and let go of the idea that everything needs to be an A. Although that is what i strived for, I am certainly not dissapointed in the grade I got. That's all I want for all of you - strive for the best! If you are unable to meet that goal, don't beat yourself up about it, it was SO hard for you to get the grade you did.. you should be proud of yourself!
I have to be honest, my first attempt at the exam - i failed. I was extremely down on myself, but.. it only meant I had to work harder the next time. With each course you take, you have 2 chances to achieve a grade of over 50% however if you do not achieve it the first time, you have a second chance. The second chance was all I needed, and the hard work paid off! I will discuss a little bit about The University of Athabasca for those of you who are interested.
Talk soon, and good look on your studies <3
xo
Thursday, October 28, 2010
You should take your own advice :)
You would think that you would be prepared when life threw you a curve ball.. turns out, I wasn't. I don't think you could ever be prepared for the unexpected aspects of life. It doesn't matter how much you have been through in your lifetime, there will always be something that will catch you off guard, and damage you. After years of struggling with what I have been given, I was finally starting to see the light at the end of the tunnle.. Albeit small, very small, actually.. at least I could see a glimmer of hope. I finally felt like I was actually getting somewhere. Was it the perfect way to do things, no, probably not. I did a lot of things that had I known what I know now, I probably wouldn't have done. At the end of the day though, life is one big ball of crazy and you need to learn how to have fun with it. It doesn't matter what you do, or what you don't do.. you will always be criticized. If you're not educated on the matter, and you've never been through it.. you will never, ever know what someone is going through. I don't care how much you think you may know about me, or my illness.. you know nothing. I like to look at this illness as a filter; a filter for all the bad in my life. Without it, I wouldn't know who I could and couldn't trust. It's not always the easiest way to learn about people but, it's effective.
I have had a really hard month, both physically and emotionally. Maybe it's that people don't understand me, or maybe it's that they don't understand what I'm going through, either way.. just because you "know" me, doesn't make you an expert on me, or what I'm dealing with. People can talk until they're blue in the face, but at the end of the day, you're not up with me at 5:00 in the morning, not having had any sleep, in so much pain that just laying down makes you sweat. I don't know what it is ..... {I am exhausted, and I keep falling asleep at the keyboard.. I will write back tomorrow}
I have had a really hard month, both physically and emotionally. Maybe it's that people don't understand me, or maybe it's that they don't understand what I'm going through, either way.. just because you "know" me, doesn't make you an expert on me, or what I'm dealing with. People can talk until they're blue in the face, but at the end of the day, you're not up with me at 5:00 in the morning, not having had any sleep, in so much pain that just laying down makes you sweat. I don't know what it is ..... {I am exhausted, and I keep falling asleep at the keyboard.. I will write back tomorrow}
Wednesday, October 27, 2010
30 Things You May Not Know About My Illness....
I saw this on a fellow Lupie's blog and I thought I would fill it out as well...
1. The illness I live with is: Lupus (SLE), Epilepsy, Polycystic Ovarian Disease, Gastro Esophagual Reflux Disease, High Blood Pressure + rapid heart rate, Bipolar Disorder, Raynauds Phenomenon, Fibromyalgia.
2. I was diagnosed in the year: 2010
3. But I had symptoms since: I started to notice minimal changes in my joints around the age of 13 starting in my hands. My severe symptoms didn't begin until around 2008. It has been an extremely progressive journey, each year, I am faced with a new and daunting challenge.
4. The biggest adjustment I have had to make is: The quantity in which I do things. I try to do minimal things to avoid stress, and flares. It's the quantity in which i do things that I focus on the most now. One thing you will learn, very quickly, is that each day, minute, and hour is never the same.. One minute you will be feeling okay, and the next you feel as if you've been hit by a truck. My sleeping habits have taken the biggest hit...
5. Most people assume: That because I have a full face of makeup on and I look okay, it must mean I feel okay. Wrong - inside, my body is deteriorating.
6. The hardest part about mornings is: waking up after a relatively okay day, to find that I can no longer walk on my own anymore. It's mornings such as those that are the hardest, it reminds me how sick I really am.
7. My favorite medical TV show is: I would have to say I have 3; Mystery Diagnosis because i can closely relate, ER, and Dr.G: Medical Examiner.
8. A gadget I couldn't live without is: It's a total tie. I don't think I could live without my laptop though. Second would have to be my blackberry.
9. The hardest parts about nights are: Falling asleep. Sometimes, I am in so much hurrendous pain, that the thought of falling asleep is discouraging. I can never seem to get comfortable. Some nights, even after taking my meds, and having a heating pad on my back, hip, and legs, I still find myself lying bed, awake, and in pain.
10. Each day I take: an entire "makeup" bag full of medicine..
11. Regarding alternative treatments: I think alternative treatments are a great idea as long as you work with your primary care physician and naturopath to create the perfect treatment plan.
12. If I had to choose between an invisible illness and a visible one I would choose: This is such a hard question.. I think about it often. There are days where I wish I didn't have an illness, especially one that doesn't show how sick I feel. A lot of people disregard you as being "lazy" or "unreliable" because of certain limitations you might have. But then, there are some days where I thank God, and truly believe it is a blessing in disguise that people can't tell how sick I really am. I hate when people stare because you look sick, I know they are just curious but it kind of hurts.
13. Regarding work and career: I am still at the point in my disease where I haven't begun treatment, it will be a journey to get where I want to be but I'm not giving up. I go to school part-time, and I am currently looking for a job that works for me, not a job that I work for. Ultimately, i want to be happy and I've come to the realization that it doesn't happen over night.. anything in life worth something takes time, and a lot of hard work.
14. People would be surprised to know: That i take 16 pills a day.
15. The hardest thing to accept about my new reality is: nothing is ever promised. Things that used to be so easy, and done without thought, are now as hard as ever, and have tons of thought put into it..
16. Something I never thought I could do with my illness was: To be a mom. It is something I have always wanted, however never thought I could have the opportunity to experience. When the reality of my disease was in plain sight, I thought that was it for my dreams about becoming a mom. From what my doctors have told me, it's totally possible!
17. The commercials about my illness: The only commercial I have ever seen is on Global, and it's been the same commercial for the last 8+ years.. to add onto it, it's only shown around Lupus Awareness month. It doesn't portray the disease at all, it's a celebrity talking about how her mother's Lupus effected her.
18. Something I really miss doing since I was diagnosed: I really miss sitting for long periods at a time, whether to watch a movie, or read a book. I usually can't sit for longer than an hour before starting to feel the pain really badly.
19. It was really hard for me to give up: Cooking. I love, love, love cooking. I used to cook every single night for my parents. They would come home every night to a home cooked meal. Since my disease has progressed, I have been unable to cook as I used to - my hands, back, legs, and hip hurt was too badly to keep up.
20. A new hobby I have taken up since my diagnosis is: Youtube :) it has become part of my daily routine... it's so much fun for me and I love being able to help people!
21. If I could have one day of normal again I would: Have a fun-filled day of old traditions; hiking, baking, bike riding.. Oh, how I wish..
22. My illness has taught me: There is always somebody worse off then you... sometimes you need to look at the positive in life and look for life's blessings - they ARE there.. you just need to look for them.
23. One thing people say that gets under my skin is: Maybe if you didn't take so many pills, you wouldn't be so sick.. they are what is making you sick! Oh, the best one is.. maybe if you went to the gym more, your joints wouldn't hurt so much.. really? who gave you your PhD!
24. But I love it when people: Acknowledge your fight. It makes me feel like I'm doing something right... we all need a little bit of encouragement sometimes.
25. My favorite motto, quote, etc is: "These things were sent to try us..." AND your biggest worries are the ones that don't happen.
26. When someone is diagnosed I would like to tell them: Learn to laugh. When you want to cry, learn to be silly.. eventually, things will get better.. life is a journey. It helps keep things interesting :) =
27. Something that has surprised me about living with an illness is: How fast life can change.. One minute, everything is fine.. the next, life is changed forever..
28. The nicest thing someone has done for me when I wasn't feeling well was: To come lay with me.. to keep me company. Usually when I'm really sick, just having company makes the world of difference.
29. I'm involved with Invisible Illness Week because: I'm not too sure what invisible illness week is so I'm going to go look it up after I finish this questionnaire.
30. The fact that you read this makes me feel: so honored. It is because of this that I do what I do. Not only do I love to educate people about my illness, I love to help people so they know they're not alone.
Thank you so much for taking the time to read this.. if you have any questions, don't hesitate to ask :)
1. The illness I live with is: Lupus (SLE), Epilepsy, Polycystic Ovarian Disease, Gastro Esophagual Reflux Disease, High Blood Pressure + rapid heart rate, Bipolar Disorder, Raynauds Phenomenon, Fibromyalgia.
2. I was diagnosed in the year: 2010
3. But I had symptoms since: I started to notice minimal changes in my joints around the age of 13 starting in my hands. My severe symptoms didn't begin until around 2008. It has been an extremely progressive journey, each year, I am faced with a new and daunting challenge.
4. The biggest adjustment I have had to make is: The quantity in which I do things. I try to do minimal things to avoid stress, and flares. It's the quantity in which i do things that I focus on the most now. One thing you will learn, very quickly, is that each day, minute, and hour is never the same.. One minute you will be feeling okay, and the next you feel as if you've been hit by a truck. My sleeping habits have taken the biggest hit...
5. Most people assume: That because I have a full face of makeup on and I look okay, it must mean I feel okay. Wrong - inside, my body is deteriorating.
6. The hardest part about mornings is: waking up after a relatively okay day, to find that I can no longer walk on my own anymore. It's mornings such as those that are the hardest, it reminds me how sick I really am.
7. My favorite medical TV show is: I would have to say I have 3; Mystery Diagnosis because i can closely relate, ER, and Dr.G: Medical Examiner.
8. A gadget I couldn't live without is: It's a total tie. I don't think I could live without my laptop though. Second would have to be my blackberry.
9. The hardest parts about nights are: Falling asleep. Sometimes, I am in so much hurrendous pain, that the thought of falling asleep is discouraging. I can never seem to get comfortable. Some nights, even after taking my meds, and having a heating pad on my back, hip, and legs, I still find myself lying bed, awake, and in pain.
10. Each day I take: an entire "makeup" bag full of medicine..
11. Regarding alternative treatments: I think alternative treatments are a great idea as long as you work with your primary care physician and naturopath to create the perfect treatment plan.
12. If I had to choose between an invisible illness and a visible one I would choose: This is such a hard question.. I think about it often. There are days where I wish I didn't have an illness, especially one that doesn't show how sick I feel. A lot of people disregard you as being "lazy" or "unreliable" because of certain limitations you might have. But then, there are some days where I thank God, and truly believe it is a blessing in disguise that people can't tell how sick I really am. I hate when people stare because you look sick, I know they are just curious but it kind of hurts.
13. Regarding work and career: I am still at the point in my disease where I haven't begun treatment, it will be a journey to get where I want to be but I'm not giving up. I go to school part-time, and I am currently looking for a job that works for me, not a job that I work for. Ultimately, i want to be happy and I've come to the realization that it doesn't happen over night.. anything in life worth something takes time, and a lot of hard work.
14. People would be surprised to know: That i take 16 pills a day.
15. The hardest thing to accept about my new reality is: nothing is ever promised. Things that used to be so easy, and done without thought, are now as hard as ever, and have tons of thought put into it..
16. Something I never thought I could do with my illness was: To be a mom. It is something I have always wanted, however never thought I could have the opportunity to experience. When the reality of my disease was in plain sight, I thought that was it for my dreams about becoming a mom. From what my doctors have told me, it's totally possible!
17. The commercials about my illness: The only commercial I have ever seen is on Global, and it's been the same commercial for the last 8+ years.. to add onto it, it's only shown around Lupus Awareness month. It doesn't portray the disease at all, it's a celebrity talking about how her mother's Lupus effected her.
18. Something I really miss doing since I was diagnosed: I really miss sitting for long periods at a time, whether to watch a movie, or read a book. I usually can't sit for longer than an hour before starting to feel the pain really badly.
19. It was really hard for me to give up: Cooking. I love, love, love cooking. I used to cook every single night for my parents. They would come home every night to a home cooked meal. Since my disease has progressed, I have been unable to cook as I used to - my hands, back, legs, and hip hurt was too badly to keep up.
20. A new hobby I have taken up since my diagnosis is: Youtube :) it has become part of my daily routine... it's so much fun for me and I love being able to help people!
21. If I could have one day of normal again I would: Have a fun-filled day of old traditions; hiking, baking, bike riding.. Oh, how I wish..
22. My illness has taught me: There is always somebody worse off then you... sometimes you need to look at the positive in life and look for life's blessings - they ARE there.. you just need to look for them.
23. One thing people say that gets under my skin is: Maybe if you didn't take so many pills, you wouldn't be so sick.. they are what is making you sick! Oh, the best one is.. maybe if you went to the gym more, your joints wouldn't hurt so much.. really? who gave you your PhD!
24. But I love it when people: Acknowledge your fight. It makes me feel like I'm doing something right... we all need a little bit of encouragement sometimes.
25. My favorite motto, quote, etc is: "These things were sent to try us..." AND your biggest worries are the ones that don't happen.
26. When someone is diagnosed I would like to tell them: Learn to laugh. When you want to cry, learn to be silly.. eventually, things will get better.. life is a journey. It helps keep things interesting :) =
27. Something that has surprised me about living with an illness is: How fast life can change.. One minute, everything is fine.. the next, life is changed forever..
28. The nicest thing someone has done for me when I wasn't feeling well was: To come lay with me.. to keep me company. Usually when I'm really sick, just having company makes the world of difference.
29. I'm involved with Invisible Illness Week because: I'm not too sure what invisible illness week is so I'm going to go look it up after I finish this questionnaire.
30. The fact that you read this makes me feel: so honored. It is because of this that I do what I do. Not only do I love to educate people about my illness, I love to help people so they know they're not alone.
Thank you so much for taking the time to read this.. if you have any questions, don't hesitate to ask :)
Note to Self
I was reading a fellow Lupie's blog this morning, and came across a post she had written at the beginning of September about a woman who lost her battle to Lupus. With her sudden passing, a letter was left, for all those both living with the disease, or coping with a loved one who suffers from the disease... this letter really pulled on my heart strings and I think they will for you too......
A Letter Written By a Lupus patient who apparently ended up Losing their battle with Lupus by Kym Tomlinson-Ryan on Thursday, September 2, 2010 at 9:09pm
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! ====
A Letter Written By a Lupus patient who apparently ended up Losing their battle with Lupus by Kym Tomlinson-Ryan on Thursday, September 2, 2010 at 9:09pm
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! ====
Subscribe to:
Posts (Atom)