Once again, I feel like I've hit a roadblock with my treatment. I'd be lying if I said I didn't feel defeated right now.
In case you are reading this and don't know the backstory, about a month ago now, I found out that the tacrolimus side effects were becoming too strong. I went off for a few days and started having skin and stomach issues, so I then resumed a lower dose to see if things would even out, to see if I could get the benefits without the overwhelming side effects. At first I was handling it ok. Then in the last few days, the weakness side effect started becoming overwhelming again. My legs started to feel shaky and I felt faint and dizzy all the time. I started struggling with the abilities I had just discovered I could do again.
The reason I say "medication is my frenemy" is simple. When I look back at how I was doing at this time last year, I was in pretty pitiful shape. I had to have help for just about everything, and my mom said I felt pretty much like dead weight when she'd help me out of chairs and stuff. I had a lung function test and found my lungs were weaker than normal, and I wasn't even surprised since I felt short of breath all the time. My heart was racing quite often and my chest hurt, and the echocardigram showed inflammation of my heart. I could tell this was not just affecting my muscle strength anymore, but my organs. I felt terrible and pretty much helpless.
Now, after a year of tacrolimus, I have regained some strength back. (Strength I didn't realize I had gained back until I was off the medication.) I still have so many abilities I can't do and I am still working on, but I'm actually doing some things I couldn't do a year ago. Even something as simple as opening the refrigerator door is a big deal for me right now! My lungs feel a good bit stronger and it's been a long time since I had a heart racing episode. So it has done a lot of good.
The problem lies that while I'm on the medication, I can't feel the good it's doing. The fatigue and weakness become so overwhelming I don't even feel like myself. The problem is, without it I could lose the progress I have made, and I definitely do not want to return to the place I was a year ago.
Without the medication, things could get dangerous again. With it, I'm exhausted and feel like I'm losing my mind. Both my friend and my enemy. Ugh.
So here I am, dealing with my frenemy. My weakness from the disease is better; but the weakness from the medication is just counteracting that. I really had no idea I had gained strength back until I was off the medication. Then I started to do things I couldn't do previously. More so, I felt like me again.
So here I am again, not sure which direction to turn from here. I am praying for peace and strength and wisdom right now.
Wednesday, September 26, 2012
Saturday, September 22, 2012
Happy (Belated) Myositis Awareness Day!
I had every intention of posting this ON the actually Myositis Awareness day but due to various interruptions this week this ended up being a little late. Oops. For one thing, the survey was longer than I realized and took longer than I expected; for another being the week in which I went to Duke my week was kind of turned upside down and messed up my plans a bit.
I think it is kind appropriate that I'm a little late with this though--that's what juvenile dermatomyositis (or JDM) has done for me throughout my life. I make plans, and somehow things go awry. Sometimes I'm just not having a good week. Other times I'm having a good week, but it's a busy week so I still don't have all the energy I need to accomplish what I would like to because there are too many things going on. It's a constant presence in my life, day to day.
So a little bit about Myositis Awareness Day:
September 21st is Myositis Awareness day! In 2006 Myositis Awareness Day was created by the United States House of Representatives. Sadly, though this was created six years ago, you rarely hear anything about it on the news or in the paper. I had every intention of contacting local news stations this year, but realized if they chose to do a story about it, I would not even be in town on the days leading up to it. Next year, I'll have to plan my doctor appointment a little more carefully!
There is more than one type of myositis-- In children there is juvenile dermatomyosits and juvenile polymyositis;--then there are at least three types of adult myositis--dermatomyositis, polymyositis, and inclusion body myositis.
To learn a little more about the different types of myositis, please go to www.curejm.org or www.myositis.org
In September, we also have invisible illness awareness week. I'm not sure if it's nationally recognized (though it should be) but as part of rest ministries attempt to raise awareness about invisible illnesses, they have issued this survey to fill out. Since myositis is often invisible, it seemed appropriate. So in honor of Invisible Awareness and Myositis Awareness Day, here goes....
1. The illness I live with is:
The "big dog in the fight" is juvenile dermatomyositis (JDM). I will always be considered to have the juvenile form as it began in my childhood. The main symptoms are muscle weakness, pain, and a rash that is painful and itchy. It's also not uncommon to have stomach issues due to the lining of the stomach being inflamed. It can start to affect organs, and my lungs and heart have been slightly affected (thankfully not as badly as the could be, and from what we can tell the damage there is possibly reversible at this point). Another symptom I deal with regarding JDM is calcinosis. I basically have little lumps of hard calcium deposited under my skin. The ones on the nerves really hurt. However, as with all autoimmune diseases they rarely come alone. I once heard someone say that autoimmune diseases are kind of like that annoying person that comes to your Christmas party uninvited and then they bring all their obnoxious friends with them. Yeah, that is a pretty good comparison. ha! I also deal with Raynaud's phenomenon, fibromyalgia, and high sensitivity/allergies to drugs which greatly complicates the treatment of the previous issues. However, when my JDM is more under control, so are the other issues.
2. I was diagnosed with it in the year:
In December of 1993, at age 9. Pretty scary for a kid.
3. But I had symptoms since:
I had definite symptoms since early in 1992. However, I was always a clumsy kid and never exactly strong, and had some skin issues from early on. They may not be related, but given my long history with this illness, I do wonder if it began much earlier than I or my parents noticed or realized. In 1992, that was when it first really affecting my day to day life and abilities. I stopped wanting to go to dance class. I couldn't stand up from the floor the way most kids did. Various things like that kept happening, and that was when we first realized that something wasn't quite "normal."
4. The biggest adjustment I’ve had to make is:
Hmmm... this one is hard since I was so young when it first hit. I would say, probably just have to adjust and realize that I couldn't do everything everyone else did. Probably the hardest thing is I'm always have to "readjust" my adjustments. There are times I've been better, and times I've been worse. What I can do one month may not be the same the next. I've had to learn a lot about listening to my body, resting up for certain things, and resting after certain things. It can be hard to find the balance sometimes between doing too much and doing too little. I've learned sometimes I have to say "no" not because I don't WANT to do a certain thing or help with this or help with that, but because I have to make a responsible decision in order to protect my health.
5. Most people assume:
I wouldn't say necessarily "most" people but I know "some" people who definitely assume things that are very far from the truth. The biggest assumptions I've run into are because I'm positive things aren't that bad, or that I'm making this up to get attention. I'll never understand why people think that or why they even care. The truth is, the reason I'm positive is that I learned that my contentment could not come from how I felt physically. If it did, I'd be miserable to be around. I wouldn't want to be around me! My contentment comes from my faith and nothing else.
6. The hardest part about mornings are:
Fatigue and pain. :( Most days are very difficult until afternoon. My pain is always at it's highest and it takes a long time to work it out.
7. My favorite medical TV show is:
Ha! My life is a medical drama so I have no interest in watching them. If I'm watching TV, I need to have some comic relief. Please give me sitcoms! I love the oldies the best--Leave It to Beaver, Andy Griffith, Gomer Pyle USMC, etc. Sometimes they are great ways to help take my mind off things when I'm in the midst of a really bad day.
8. A gadget I couldn’t live without is:
I'm very thankful for my laptop, as it is often my "window to the world." However, in the last year I've learned to really appreciate accessibility equipment. Yes, I just said I'm thankful for accessibility equipment. That's not to say I won't be overjoyed if the day comes I don't have to use it, but one night when I was not feeling too positive about having it, I ran across a video on Joni and Friends about their Wheels to the World ministries. It really opened up my eyes to how some people don't have accessibility equipment easily accessible to them. I am so blessed that I live somewhere where I am able to get "gadgets" to help me out when my body is failing me. I really don't know what I would do without them!
9. The hardest part about nights are:
The nights I'm completely exhausted but can't go to sleep--sometimes it is due to pain and sometimes it is due to side effects of medications, but it can be very overwhelming and frustrating.
10. Each day I take __ pills and vitamins. (No comments, please)
Right now, I think I take around 19 pills??? But some of them are the same medication, just taken at different times of the day or I take more than one for a higher dosage. It's a combo of immune suppressants (mine is technically a transplant drug), pain meds, antihistamines, and vitamins.
11. Regarding alternative treatments I:
I haven't heard of any "alternative" treatments that I feel comfortable with, but I think it is each individuals choice. Unless you consider "vitamins" an alternative, which then I am not opposed to and am on a few myself. You do have to be careful though because some vitamins/supplements can interact with other medications so always talk to your doctor and do research first about any change to your treatment plan.
12. If I had to choose between an invisible illness or visible I would choose:
This is an interesting question. My illness has been invisible at times and then in the last few years as I've gotten worse, it's more obvious from the outside, so I know what is like to be in both those categories. I still look a lot better (thankfully!) than I feel, but the signs that I'm weaker and fatigued are there. When the illness seemed completely invisible to the untrained eye (knowing the symptoms of the disease, I could see things other people couldn't), I had a lot trouble with people accusing me of not being sick, and at times they were pretty hurtful and judgmental about it. It is hard to explain why it is so difficult to have people say it's not there when it is, and I know it really doesn't matter what other people think of me, but it can still be hurtful nonetheless. The best way I can explain it is for you to think about something that causes you great hardship or pain or grief... maybe it's an illness, a loss of a loved one, or a financial crisis or the loss of a job.... now think about how would you feel if someone told you that "you were just making that up" or "it's not that bad" or "you just want attention." You'd be hurt right? Because you'd need understanding and support yet you would get judgement and insensitivity. Even though I was better at the time (when my illness was less visible), I still struggled substantially to the point it affected my daily quality of life and got frustrated when people were insensitive to that. However, since my illness has become visible, my abilities have gotten less and less until just day to day activities such as putting on my own clothes or doing my own hair or standing up on my own have become impossible. So for that reason, I would say I wish it was invisible again just because that would mean I was doing better and feeling better, and I honestly greatly miss all those "little things" I can't do--they seem so much bigger when you can't do them anymore.
13. Regarding working and career:
I'm not really sure if that will ever be in my future. Right now, my illness is a full time job. I've tried to quit that job, but that hasn't worked out so well yet. I've learned not to plan too far ahead because sometimes the illness does throw curve balls that I'm not expecting. I take it a day at a time, sometimes moment by moment and pray that if God wants me to have a career, that He'll open up to doors for that to happen and restore my strength and energy to the point where it can.
14. People would be surprised to know:
Everyone with myositis is going to have a different journey. You can't assume that just because one person goes into remission that ALL people with myositis will. This is true for a lot of other autoimmune conditions as well. There is no one-size-fits-all treatment plan that works for everyone. It's very much guesswork sometime figuring out what medication is the best for you. For every treatment plan that has failed me (and there's been a lot), somewhere out there someone will refer to it is as their "miracle drug." Then there are things I can take, other people may not do well on. It's very much trial and error. A diagnosis of any of the forms of myositis is life altering even in the best of circumstances and there are some that go into remission; however, there are also many who just do not respond to treatment and eventually pass away due to complications of the disease. I've always fallen somewhere in the middle of those two extremes. My point is that you can meet two people with the same illness, but don't expect them to have the same story or the same limitations. Listen and learn and be compassionate to where they are in their personal journey.
15. The hardest thing to accept about my new reality has been:
I hate when I have to say "no" to good things, especially when it comes to Godly things like serving within my church. It's often hard to find a reason in that. However, I've learned that it's not just our actions but our attitudes and our thoughts that we serve God with. I may not be able to work in the children's ministry I desperately miss, but I can handle my struggles with a smile and often God uses that in other's lives. I'm often reminded of the widow and the coins. (Mark 12:41-44, Luke 21:1-4). It wasn't so much how much she gave, but the sacrifice she made and the spirit in which she gave. I think that goes for more than just money--it works for our talents, gifts, and energy. It's not about having the most but making the most of what you have.
16. Something I never thought I could do with my illness that I did was:
When I was first diagnosed I wanted to finish school with the classmates I started with. I didn't know if it would be possible, but I was going to try my best. I worked hard and many times my few hours of energy would be dedicated to finishing my school work. I just wanted to do the best I could and knew if I did that I would be proud of myself, no matter what happened. I was pretty surprised my Sophomore year when I was given the news I was ranked 1st in my class. I continued to work hard and graduated Valedictorian. I am thankful that God blessed me with a good mind and a determined spirit or I would never have been able to accomplish this goal.
17. The commercials about my illness:
ha. ha. ha. That's FUNNY. There are not any commercials about my illness. When your illness is considered rare (I'm not sure of the exact stats--when I was diagnosed it was 3 in a million, now I hear 5 in a million, either way it's not exactly common) it doesn't get a lot of press time. I've had more people say "Der-mato-myo-what?" more times than I can count. I will say that it bothers me when I hear commercials about other illnesses and it will make remission sound like a sure thing. I know it's not true for everyone. When they say it's a 55% remission rate, there are 45% that are not going into remission from that medication, yet I know those people are probably faced daily with people saying "well, why don't you just try _____ because remission is possible!!!" And then they have to say, "well actually I tried that and it didn't work." It can make an already difficult situation worse.
18. Something I really miss doing since I was diagnosed is:
This changes because I'm constantly having to adjust to whatever my body is doing at that time. Right now, I miss really, really simple things. I miss being able to care for my own basic needs that I now have to ask for help to do or complete. I am thankful that some of my abilities have begun to return that I lost last year, but it will be a long time before they are all back. I look forward to the day when fixing my hair isn't a big deal and when I can stand up successfully from a chair 100% of the time. Sometimes I miss doing silly things though too.... like being a Wii Athlete.
19. It was really hard to have to give up:
My children's ministry at church. That was several years ago when things were digressing and I just wasn't strong enough to keep the commitment anymore. I miss working with kids and the funny things they do and say.
20. A new hobby I have taken up since my diagnosis is:
I love taking pictures. I love video/photo programs on my computers. In the past year or two, I've really enjoyed painting and being creative. Because I have to be at home so much, my cats are a big part of my life too.
21. If I could have one day of feeling normal again I would:
Go the Disney World!!!!! I honestly don't know what I would do. I hope I'd use that time wisely though.
22. My illness has taught me:
So much. God is in control, even in the midst of the storm. Don't take things for granted and count your blessings. You are never so low that you can't find a way to lift up someone else. A little compassion can make a world of difference in someone's life. That contentment is a choice, you can find a way to be joyful through anything.
23. Want to know a secret? One thing people say that gets under my skin is:
I could probably write a book on things people should NOT say to the chronically ill, but probably the worst one to me is: "You aren't trying hard enough, and if you were more positive you would be well." This one really bothers me and really hurts. Some days just making it through the day is an exhausting effort. It's a challenge and sometimes I have to constantly remind myself to focus on the positives in my life just to get through. Doing little day to day things are sometimes huge problems for me. Yet, for the most part I keep smiling. I keep laughing. You have to learn to be positive in the midst of the pain, fatigue, and weakness--it's key to surviving the emotional toll illness but will not heal or cure the illness. I've tried to "try harder" thing many times before and just ended up flaring, and losing abilities instead of gaining them. My body has to rest, no matter how much I wish it didn't. I don't know if healing is in the cards for me or not--it's God's call and timing, not mine. I'm just supposed to be faithful during the storm. The illness may take a lot from me, but I'm determined that it will not and cannot take my joy or contentment.
24. But I love it when people:
Listen and learn. Just having someone show they care, means so much. There are times when I am having a bad day and I just need an encouraging word or someone who will just hear me. Nothing more. You don't have to fix my illness. You can't. Just be a friend, and let me be your friend too.
25. My favorite motto, scripture, quote that gets me through tough times is:Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. -James 1:2-4 and "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. -- 2 Corinthians 12:9-10
26. When someone is diagnosed I’d like to tell them:
First and most importantly, God is in control. Secondly, they are their best advocate. They need to research the illness and learn as much as they can, and they need to find a doctor that is educated on the illness. However, they need to realize as they research that they will read "worst case scenarios" and yes it is overwhelming to read them. It's good to remember in those cases that just because it can happen, doesn't mean it will, and it's incredibly important to take it one day at a time. Also, as overwhelming as it is, they'll be surprised what they can handle if they allow God to give them the grace to get them through. If someone told me on the day of my diagnosis I'd be dealing with this almost 20 years later, and the worst of times were up ahead, I'd say I'd never get through it. Yet here I am. It's not that there are not days that I don't want to give up; but somehow something always happens to pull me out of that pit.
27. Something that has surprised me about living with an illness is:
This kind of goes back to the previous answer. I'm surprised that I've managed to live this long with the illness and yet not allow it to completely break my spirit. I know that it has very little to do with me, but how gracious God is even in the midst of suffering. Usually when I get to my breaking point, something will happen, unexpectedly to relieve some of the strain. I know that is God moving. On top of that, God has blessed me with a wonderful family (especially my mom) and friends that have helped me get through my darkest moments.
28. The nicest thing someone did for me when I wasn’t feeling well was:
I'm thankful for anything nice people have done for me. Care baskets. Cards. Phone calls. It all means to the world to me and I'm so thankful. Just knowing people care makes the hard days easier.
29. I’m involved with Invisible Illness Week because:
I have been blessed with some wonderful people in my life--family, friends, church family--who have done a lot to show they care and support me. I wish I could say that this was ALWAYS the case, but sadly, it is not. I have also had people be completely judgmental and hateful regarding my illness. The sad truth is, every person who has ever hurt me in this way claimed to believe in Christ and went to a church every Sunday. If I hadn't come to know the Lord before encountering these people, there is no way I would have been drawn to Him and would have been turned off completely. The sad thing is, there are people out there that are lost and suffering and they need the hope that can only come from a relationship with Christ. Instead of being met with the love of Christ at church, they go and feel defeated and torn apart, they become the center of gossip and leave without any idea of who Christ really is. This needs to change. I feel that awareness leads to understanding, and I hope understanding will lead to change. I hope that I can be a voice for awareness so that others will learn to be compassionate to the suffering of others. Galatians 6:2 tells us to carry each others burdens and in doing that we will fulfill the law of Christ. It's time churches start living that verse.
30. The fact that you read this list makes me feel:
I'm very honored. I'm very thankful that you care enough to read. I'm also very sorry that it was so long. I guess I have a lot to say! I hope that you learned something and I thank you for your time.
I think it is kind appropriate that I'm a little late with this though--that's what juvenile dermatomyositis (or JDM) has done for me throughout my life. I make plans, and somehow things go awry. Sometimes I'm just not having a good week. Other times I'm having a good week, but it's a busy week so I still don't have all the energy I need to accomplish what I would like to because there are too many things going on. It's a constant presence in my life, day to day.
So a little bit about Myositis Awareness Day:
September 21st is Myositis Awareness day! In 2006 Myositis Awareness Day was created by the United States House of Representatives. Sadly, though this was created six years ago, you rarely hear anything about it on the news or in the paper. I had every intention of contacting local news stations this year, but realized if they chose to do a story about it, I would not even be in town on the days leading up to it. Next year, I'll have to plan my doctor appointment a little more carefully!
There is more than one type of myositis-- In children there is juvenile dermatomyosits and juvenile polymyositis;--then there are at least three types of adult myositis--dermatomyositis, polymyositis, and inclusion body myositis.
To learn a little more about the different types of myositis, please go to www.curejm.org or www.myositis.org
In September, we also have invisible illness awareness week. I'm not sure if it's nationally recognized (though it should be) but as part of rest ministries attempt to raise awareness about invisible illnesses, they have issued this survey to fill out. Since myositis is often invisible, it seemed appropriate. So in honor of Invisible Awareness and Myositis Awareness Day, here goes....
1. The illness I live with is:
The "big dog in the fight" is juvenile dermatomyositis (JDM). I will always be considered to have the juvenile form as it began in my childhood. The main symptoms are muscle weakness, pain, and a rash that is painful and itchy. It's also not uncommon to have stomach issues due to the lining of the stomach being inflamed. It can start to affect organs, and my lungs and heart have been slightly affected (thankfully not as badly as the could be, and from what we can tell the damage there is possibly reversible at this point). Another symptom I deal with regarding JDM is calcinosis. I basically have little lumps of hard calcium deposited under my skin. The ones on the nerves really hurt. However, as with all autoimmune diseases they rarely come alone. I once heard someone say that autoimmune diseases are kind of like that annoying person that comes to your Christmas party uninvited and then they bring all their obnoxious friends with them. Yeah, that is a pretty good comparison. ha! I also deal with Raynaud's phenomenon, fibromyalgia, and high sensitivity/allergies to drugs which greatly complicates the treatment of the previous issues. However, when my JDM is more under control, so are the other issues.
2. I was diagnosed with it in the year:
In December of 1993, at age 9. Pretty scary for a kid.
3. But I had symptoms since:
I had definite symptoms since early in 1992. However, I was always a clumsy kid and never exactly strong, and had some skin issues from early on. They may not be related, but given my long history with this illness, I do wonder if it began much earlier than I or my parents noticed or realized. In 1992, that was when it first really affecting my day to day life and abilities. I stopped wanting to go to dance class. I couldn't stand up from the floor the way most kids did. Various things like that kept happening, and that was when we first realized that something wasn't quite "normal."
4. The biggest adjustment I’ve had to make is:
Hmmm... this one is hard since I was so young when it first hit. I would say, probably just have to adjust and realize that I couldn't do everything everyone else did. Probably the hardest thing is I'm always have to "readjust" my adjustments. There are times I've been better, and times I've been worse. What I can do one month may not be the same the next. I've had to learn a lot about listening to my body, resting up for certain things, and resting after certain things. It can be hard to find the balance sometimes between doing too much and doing too little. I've learned sometimes I have to say "no" not because I don't WANT to do a certain thing or help with this or help with that, but because I have to make a responsible decision in order to protect my health.
5. Most people assume:
I wouldn't say necessarily "most" people but I know "some" people who definitely assume things that are very far from the truth. The biggest assumptions I've run into are because I'm positive things aren't that bad, or that I'm making this up to get attention. I'll never understand why people think that or why they even care. The truth is, the reason I'm positive is that I learned that my contentment could not come from how I felt physically. If it did, I'd be miserable to be around. I wouldn't want to be around me! My contentment comes from my faith and nothing else.
6. The hardest part about mornings are:
Fatigue and pain. :( Most days are very difficult until afternoon. My pain is always at it's highest and it takes a long time to work it out.
7. My favorite medical TV show is:
Ha! My life is a medical drama so I have no interest in watching them. If I'm watching TV, I need to have some comic relief. Please give me sitcoms! I love the oldies the best--Leave It to Beaver, Andy Griffith, Gomer Pyle USMC, etc. Sometimes they are great ways to help take my mind off things when I'm in the midst of a really bad day.
8. A gadget I couldn’t live without is:
I'm very thankful for my laptop, as it is often my "window to the world." However, in the last year I've learned to really appreciate accessibility equipment. Yes, I just said I'm thankful for accessibility equipment. That's not to say I won't be overjoyed if the day comes I don't have to use it, but one night when I was not feeling too positive about having it, I ran across a video on Joni and Friends about their Wheels to the World ministries. It really opened up my eyes to how some people don't have accessibility equipment easily accessible to them. I am so blessed that I live somewhere where I am able to get "gadgets" to help me out when my body is failing me. I really don't know what I would do without them!
9. The hardest part about nights are:
The nights I'm completely exhausted but can't go to sleep--sometimes it is due to pain and sometimes it is due to side effects of medications, but it can be very overwhelming and frustrating.
10. Each day I take __ pills and vitamins. (No comments, please)
Right now, I think I take around 19 pills??? But some of them are the same medication, just taken at different times of the day or I take more than one for a higher dosage. It's a combo of immune suppressants (mine is technically a transplant drug), pain meds, antihistamines, and vitamins.
11. Regarding alternative treatments I:
I haven't heard of any "alternative" treatments that I feel comfortable with, but I think it is each individuals choice. Unless you consider "vitamins" an alternative, which then I am not opposed to and am on a few myself. You do have to be careful though because some vitamins/supplements can interact with other medications so always talk to your doctor and do research first about any change to your treatment plan.
12. If I had to choose between an invisible illness or visible I would choose:
This is an interesting question. My illness has been invisible at times and then in the last few years as I've gotten worse, it's more obvious from the outside, so I know what is like to be in both those categories. I still look a lot better (thankfully!) than I feel, but the signs that I'm weaker and fatigued are there. When the illness seemed completely invisible to the untrained eye (knowing the symptoms of the disease, I could see things other people couldn't), I had a lot trouble with people accusing me of not being sick, and at times they were pretty hurtful and judgmental about it. It is hard to explain why it is so difficult to have people say it's not there when it is, and I know it really doesn't matter what other people think of me, but it can still be hurtful nonetheless. The best way I can explain it is for you to think about something that causes you great hardship or pain or grief... maybe it's an illness, a loss of a loved one, or a financial crisis or the loss of a job.... now think about how would you feel if someone told you that "you were just making that up" or "it's not that bad" or "you just want attention." You'd be hurt right? Because you'd need understanding and support yet you would get judgement and insensitivity. Even though I was better at the time (when my illness was less visible), I still struggled substantially to the point it affected my daily quality of life and got frustrated when people were insensitive to that. However, since my illness has become visible, my abilities have gotten less and less until just day to day activities such as putting on my own clothes or doing my own hair or standing up on my own have become impossible. So for that reason, I would say I wish it was invisible again just because that would mean I was doing better and feeling better, and I honestly greatly miss all those "little things" I can't do--they seem so much bigger when you can't do them anymore.
13. Regarding working and career:
I'm not really sure if that will ever be in my future. Right now, my illness is a full time job. I've tried to quit that job, but that hasn't worked out so well yet. I've learned not to plan too far ahead because sometimes the illness does throw curve balls that I'm not expecting. I take it a day at a time, sometimes moment by moment and pray that if God wants me to have a career, that He'll open up to doors for that to happen and restore my strength and energy to the point where it can.
14. People would be surprised to know:
Everyone with myositis is going to have a different journey. You can't assume that just because one person goes into remission that ALL people with myositis will. This is true for a lot of other autoimmune conditions as well. There is no one-size-fits-all treatment plan that works for everyone. It's very much guesswork sometime figuring out what medication is the best for you. For every treatment plan that has failed me (and there's been a lot), somewhere out there someone will refer to it is as their "miracle drug." Then there are things I can take, other people may not do well on. It's very much trial and error. A diagnosis of any of the forms of myositis is life altering even in the best of circumstances and there are some that go into remission; however, there are also many who just do not respond to treatment and eventually pass away due to complications of the disease. I've always fallen somewhere in the middle of those two extremes. My point is that you can meet two people with the same illness, but don't expect them to have the same story or the same limitations. Listen and learn and be compassionate to where they are in their personal journey.
15. The hardest thing to accept about my new reality has been:
I hate when I have to say "no" to good things, especially when it comes to Godly things like serving within my church. It's often hard to find a reason in that. However, I've learned that it's not just our actions but our attitudes and our thoughts that we serve God with. I may not be able to work in the children's ministry I desperately miss, but I can handle my struggles with a smile and often God uses that in other's lives. I'm often reminded of the widow and the coins. (Mark 12:41-44, Luke 21:1-4). It wasn't so much how much she gave, but the sacrifice she made and the spirit in which she gave. I think that goes for more than just money--it works for our talents, gifts, and energy. It's not about having the most but making the most of what you have.
16. Something I never thought I could do with my illness that I did was:
When I was first diagnosed I wanted to finish school with the classmates I started with. I didn't know if it would be possible, but I was going to try my best. I worked hard and many times my few hours of energy would be dedicated to finishing my school work. I just wanted to do the best I could and knew if I did that I would be proud of myself, no matter what happened. I was pretty surprised my Sophomore year when I was given the news I was ranked 1st in my class. I continued to work hard and graduated Valedictorian. I am thankful that God blessed me with a good mind and a determined spirit or I would never have been able to accomplish this goal.
17. The commercials about my illness:
ha. ha. ha. That's FUNNY. There are not any commercials about my illness. When your illness is considered rare (I'm not sure of the exact stats--when I was diagnosed it was 3 in a million, now I hear 5 in a million, either way it's not exactly common) it doesn't get a lot of press time. I've had more people say "Der-mato-myo-what?" more times than I can count. I will say that it bothers me when I hear commercials about other illnesses and it will make remission sound like a sure thing. I know it's not true for everyone. When they say it's a 55% remission rate, there are 45% that are not going into remission from that medication, yet I know those people are probably faced daily with people saying "well, why don't you just try _____ because remission is possible!!!" And then they have to say, "well actually I tried that and it didn't work." It can make an already difficult situation worse.
18. Something I really miss doing since I was diagnosed is:
This changes because I'm constantly having to adjust to whatever my body is doing at that time. Right now, I miss really, really simple things. I miss being able to care for my own basic needs that I now have to ask for help to do or complete. I am thankful that some of my abilities have begun to return that I lost last year, but it will be a long time before they are all back. I look forward to the day when fixing my hair isn't a big deal and when I can stand up successfully from a chair 100% of the time. Sometimes I miss doing silly things though too.... like being a Wii Athlete.
19. It was really hard to have to give up:
My children's ministry at church. That was several years ago when things were digressing and I just wasn't strong enough to keep the commitment anymore. I miss working with kids and the funny things they do and say.
20. A new hobby I have taken up since my diagnosis is:
I love taking pictures. I love video/photo programs on my computers. In the past year or two, I've really enjoyed painting and being creative. Because I have to be at home so much, my cats are a big part of my life too.
21. If I could have one day of feeling normal again I would:
Go the Disney World!!!!! I honestly don't know what I would do. I hope I'd use that time wisely though.
22. My illness has taught me:
So much. God is in control, even in the midst of the storm. Don't take things for granted and count your blessings. You are never so low that you can't find a way to lift up someone else. A little compassion can make a world of difference in someone's life. That contentment is a choice, you can find a way to be joyful through anything.
23. Want to know a secret? One thing people say that gets under my skin is:
I could probably write a book on things people should NOT say to the chronically ill, but probably the worst one to me is: "You aren't trying hard enough, and if you were more positive you would be well." This one really bothers me and really hurts. Some days just making it through the day is an exhausting effort. It's a challenge and sometimes I have to constantly remind myself to focus on the positives in my life just to get through. Doing little day to day things are sometimes huge problems for me. Yet, for the most part I keep smiling. I keep laughing. You have to learn to be positive in the midst of the pain, fatigue, and weakness--it's key to surviving the emotional toll illness but will not heal or cure the illness. I've tried to "try harder" thing many times before and just ended up flaring, and losing abilities instead of gaining them. My body has to rest, no matter how much I wish it didn't. I don't know if healing is in the cards for me or not--it's God's call and timing, not mine. I'm just supposed to be faithful during the storm. The illness may take a lot from me, but I'm determined that it will not and cannot take my joy or contentment.
24. But I love it when people:
Listen and learn. Just having someone show they care, means so much. There are times when I am having a bad day and I just need an encouraging word or someone who will just hear me. Nothing more. You don't have to fix my illness. You can't. Just be a friend, and let me be your friend too.
25. My favorite motto, scripture, quote that gets me through tough times is:Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. -James 1:2-4 and "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. -- 2 Corinthians 12:9-10
26. When someone is diagnosed I’d like to tell them:
First and most importantly, God is in control. Secondly, they are their best advocate. They need to research the illness and learn as much as they can, and they need to find a doctor that is educated on the illness. However, they need to realize as they research that they will read "worst case scenarios" and yes it is overwhelming to read them. It's good to remember in those cases that just because it can happen, doesn't mean it will, and it's incredibly important to take it one day at a time. Also, as overwhelming as it is, they'll be surprised what they can handle if they allow God to give them the grace to get them through. If someone told me on the day of my diagnosis I'd be dealing with this almost 20 years later, and the worst of times were up ahead, I'd say I'd never get through it. Yet here I am. It's not that there are not days that I don't want to give up; but somehow something always happens to pull me out of that pit.
27. Something that has surprised me about living with an illness is:
This kind of goes back to the previous answer. I'm surprised that I've managed to live this long with the illness and yet not allow it to completely break my spirit. I know that it has very little to do with me, but how gracious God is even in the midst of suffering. Usually when I get to my breaking point, something will happen, unexpectedly to relieve some of the strain. I know that is God moving. On top of that, God has blessed me with a wonderful family (especially my mom) and friends that have helped me get through my darkest moments.
28. The nicest thing someone did for me when I wasn’t feeling well was:
I'm thankful for anything nice people have done for me. Care baskets. Cards. Phone calls. It all means to the world to me and I'm so thankful. Just knowing people care makes the hard days easier.
29. I’m involved with Invisible Illness Week because:
I have been blessed with some wonderful people in my life--family, friends, church family--who have done a lot to show they care and support me. I wish I could say that this was ALWAYS the case, but sadly, it is not. I have also had people be completely judgmental and hateful regarding my illness. The sad truth is, every person who has ever hurt me in this way claimed to believe in Christ and went to a church every Sunday. If I hadn't come to know the Lord before encountering these people, there is no way I would have been drawn to Him and would have been turned off completely. The sad thing is, there are people out there that are lost and suffering and they need the hope that can only come from a relationship with Christ. Instead of being met with the love of Christ at church, they go and feel defeated and torn apart, they become the center of gossip and leave without any idea of who Christ really is. This needs to change. I feel that awareness leads to understanding, and I hope understanding will lead to change. I hope that I can be a voice for awareness so that others will learn to be compassionate to the suffering of others. Galatians 6:2 tells us to carry each others burdens and in doing that we will fulfill the law of Christ. It's time churches start living that verse.
30. The fact that you read this list makes me feel:
I'm very honored. I'm very thankful that you care enough to read. I'm also very sorry that it was so long. I guess I have a lot to say! I hope that you learned something and I thank you for your time.
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