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}
Thursday, October 28, 2010
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! ====
Thursday, October 7, 2010
Yet another day...
With anything meaningful or purposeful comes change, and with change comes routine. I'm not necessarily someone who loves routine or change for that matter but I'm going to try my absolute hardest to keep with this new routine I have for myself :) I'm finding this way of doing things to be much easier than getting my computer ready in an uncomfortable position on my bed. I will try very hard, every night before bed to post a little blog on my dat and it went.
I had one of the most awful days/night yesterday. I cannot explain to you the torture that my body was put through :s I was able to take a short, hot bath today which took the edge off of the pain. Tonight proved to be much better than last night but still pretty much sucked. Lol... I never said I was always going to be positive!! Every now and again, you need to learn to laugh at yourself... Otherwise - well never make it through this!
Its a crisp fall night.. My window is open so I can hear the breeze and the leaves rustling in the air... This is my favorite time of year :) I was also able to carve my first pumpkin of the season..
Anywho.. Its late, and I'm exhausted.. I will check back in soon.. Plus, I have some pretty exciting news :D
I had one of the most awful days/night yesterday. I cannot explain to you the torture that my body was put through :s I was able to take a short, hot bath today which took the edge off of the pain. Tonight proved to be much better than last night but still pretty much sucked. Lol... I never said I was always going to be positive!! Every now and again, you need to learn to laugh at yourself... Otherwise - well never make it through this!
Its a crisp fall night.. My window is open so I can hear the breeze and the leaves rustling in the air... This is my favorite time of year :) I was also able to carve my first pumpkin of the season..
Anywho.. Its late, and I'm exhausted.. I will check back in soon.. Plus, I have some pretty exciting news :D
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