Where to begin...I got the job at JCPenney Portrait Studio in Grand Rapids, I started my training last Thursday and I have more training tomorrow. Most of October will be training. I moved in with my grandma because she lives in Grand Rapids. I'm still doing online classes and my grandma does not have internet so I practically reside at the local library. The good thing is that so far it has been easier for me to stay focused and motivated on my schoolwork. God has worked everything out perfectly, it might not have been my first choice but I know it's gonna work out great. I will be traveling back and forth between here and home as I am filling in at the Lansing Mall store as well as working at the Woodland Mall store.
I have felt pretty good so far. I have been exhausted and today I feel a little nauseous but I have been surprised at how good I have been doing with POTS. I am still having a lot of stomach and acid problems and I am hoping the doctors will be able to figure out what's going on and how to fix it.
I have an audition at the end of the month for the Cornerstone University music program. I'm kinda nervous about all of it but at least it's close! I think I will be on the praise team at my grandma's church. I don't want to put too much on my plate so we'll see how it goes. I like my grandma's church and really want to have a church to call my own. The past few months have been extremely weird visiting different churches and not being able to say I have a church.
Monday, October 4, 2010
Friday, October 1, 2010
Changes, changes, changes...
A lot has changed: I got the job at JCPenney as a photographer, I moved to live with my grandma, my grandma does not have Internet, I started my first day of training yesterday, I had my first paper last week and I have my first exam this week... I have been extremely busy packing, moving, working, studying and all the randomness in between. More detailed update coming soon...I hope =]
Thursday, September 23, 2010
Miracle drug layoff...
I updated a few things on the 'A little bit of humor' page. Hope it brings a smile. To catch up on a few things: School is going ok, I struggle with staying motivated but am trying to work on that. I have not heard anything more about the JCPenney job, it's not looking real great. I had two doctors appointments this week and am on some new meds so hopefully they will help some of my symptoms. I go see the gastroneurologist next week so hopefully he will have some new ideas and tests to run. The season premier of Bones is airing tonight so I am super excited! =]
Be prepared for a little bit of a rant: After trying to get my medication for the nausea, Zofran, refilled for about a week I finally got a new prescription when I went in for my appointment. Excited to finally have my 'miracle drug' I went to go pick it up from the pharmacy only to find that our new insurance only covers 12 pills a month. Let me break it down for you. When I am active, even if it's just to go get my hair cut, it drains me. So when I am visiting a friend, going shopping, have generally any plans at all you can just imagine how sick and nauseous I can get. On these days I generally take 2-4 pills...in ONE day. Because I take so much my doctor wrote me a prescription for 90 days=90 pills...and they gave me 12. 12! I already try not to take Zofran when I am just hanging around at home but as you might already know from earlier posts I just had an interview for a job. What if I got the job? How am I supposed to be able to function at work when my nausea roams free throughout my body!? I don't know what I'm gonna do yet but I know I need to do something. This is the only thing that has ever significantly helped with my symptoms. I got through this past year because of Zofran. I can't express how vital this drug is to my everyday life any more than I can explain POTS. It's a miracle drug. Simple as that.
Be prepared for a little bit of a rant: After trying to get my medication for the nausea, Zofran, refilled for about a week I finally got a new prescription when I went in for my appointment. Excited to finally have my 'miracle drug' I went to go pick it up from the pharmacy only to find that our new insurance only covers 12 pills a month. Let me break it down for you. When I am active, even if it's just to go get my hair cut, it drains me. So when I am visiting a friend, going shopping, have generally any plans at all you can just imagine how sick and nauseous I can get. On these days I generally take 2-4 pills...in ONE day. Because I take so much my doctor wrote me a prescription for 90 days=90 pills...and they gave me 12. 12! I already try not to take Zofran when I am just hanging around at home but as you might already know from earlier posts I just had an interview for a job. What if I got the job? How am I supposed to be able to function at work when my nausea roams free throughout my body!? I don't know what I'm gonna do yet but I know I need to do something. This is the only thing that has ever significantly helped with my symptoms. I got through this past year because of Zofran. I can't express how vital this drug is to my everyday life any more than I can explain POTS. It's a miracle drug. Simple as that.
Saturday, September 18, 2010
Possible working girl...
This past Thursday I had an interview for a photography job at JCPenney's Portrait Studio! I finally at least got an interview. I thought that it went very well. She really liked my pictures and seemed possitive about me in general. They did a background check which is good because it means they are interested in hiring me. They told me that after they got the results from the background check and if they are still interested in me then they will schedule a second interview. If they hire me I would get to work at two of their stores because I live kinda close to both. I'm really exited about this job and I pray that I will get it. It is a seasonal job. At the end of the season they will hire 2 people so it's nice to be able to possibly make some money but also not be tied down at first incase I get too sick to work. I'm hoping that it will all work out great and I will get a part-time job there at the end of the season. We'll see! I'm not quite sure about housing or transportation but if I get the job I know God will provide all of that =]
Monday, September 13, 2010
Standing is a gift...
I am currently in the process of figuring out life and how I can actually live it with POTS. One of the things I am trying to implement into my life is a steady job. My biggest frustration is that I can only apply to jobs that don't require constant standing and even the jobs where I could possibly sit won't want me once they find out that I'm broken. I don't fully understand POTS so how am I supposed to explain that to an employer and then be confident enough to where they decide to give me the job? I feel like I'm stuck. I'm stuck in this place where I'm not sick enough not to work or be in a wheelchair but I am sick enough that standing and sometimes just life in general is an issue for me. All you POTS patients know exactly what I'm talking about and for those of you who don't I have some very simple advice; Standing is a gift. DON'T TAKE IT FOR GRANTED! And when you think about complaining that your feet hurt because you've been standing at work all day remember that there are people who worry more about their consciousness while standing then the condition of their feet. I'm not trying to be harsh just honest. Remember how blessed you are, even if you do have POTS you are still blessed.
Thank you all for your emails and comments. I love hearing from you and I am so thankful that I have been able to encourage some of you in a small way but I have to set something straight. I am not strong in this and my attitude is not admirable. I have spent so many years trying to convince myself and others that POTS hasn't really effected me that I started to actually believe that I was okay. Even today while looking for jobs, thinking about future plans, and regrets I would forget about POTS all-together. It's like I subconsciously block it out entirely and once the memory comes back I am shattered once again. I have had very dark days in the past few years, even in the past few weeks. Usually it all comes in waves but for the past few months the darkness of POTS has been constant. I believe that I am either in danger of becoming depressed or I already am. There have been a lot of changes this year in my life and I know there are many more to come. I don't say any of this to get sympathy I just want to be completely honest about where I am. I am hoping that my mother will not read this post because I would hate for her to know how I am really doing but I feel that I am being dishonest if I don't say how I really feel. I pray so often that I could just quite POTS and it kills me that quiting is not an option.
POTS is a constant cycle of new treatment that doesn't work along with test after test that come up empty, and the worse part is that there is no option to opt out...you're in it for life.
Thank you all for your emails and comments. I love hearing from you and I am so thankful that I have been able to encourage some of you in a small way but I have to set something straight. I am not strong in this and my attitude is not admirable. I have spent so many years trying to convince myself and others that POTS hasn't really effected me that I started to actually believe that I was okay. Even today while looking for jobs, thinking about future plans, and regrets I would forget about POTS all-together. It's like I subconsciously block it out entirely and once the memory comes back I am shattered once again. I have had very dark days in the past few years, even in the past few weeks. Usually it all comes in waves but for the past few months the darkness of POTS has been constant. I believe that I am either in danger of becoming depressed or I already am. There have been a lot of changes this year in my life and I know there are many more to come. I don't say any of this to get sympathy I just want to be completely honest about where I am. I am hoping that my mother will not read this post because I would hate for her to know how I am really doing but I feel that I am being dishonest if I don't say how I really feel. I pray so often that I could just quite POTS and it kills me that quiting is not an option.
POTS is a constant cycle of new treatment that doesn't work along with test after test that come up empty, and the worse part is that there is no option to opt out...you're in it for life.
Wednesday, September 8, 2010
My God delivers...
It has been quite a while. Well, for starters I had an amazing weekend in Vestaburg with my life-long friend Abby. It was good to get away and spend time with her. I have felt pretty good the last week except for when I decide to actually do something. Then without fail I load up on my Zofran (nausea medicine). I was quite busy this last labor day weekend and it always surprises me how fast my energy depletes. I can literally wake up, get ready, go out for about an hour and I feel like it's 11pm and time for bed. I need to work at being more active which should be a little easier now that it's getting colder out. Heat can completely destroy my day.
I completed my first week of school. It went pretty good. This week got off to a late start with labor day and then being gone on Tuesday. Today didn't really happen either...I did school work for about an hour and then I was completely exhausted so I slept for another 3 1/2 hours...yeah, not good. I have not been motivated at all and I do not possess the gift of making myself do school work when I feel sick. I need to work on that.
I have been reading through Isaiah and the other day I came to chapter 66. When I get upset I'm very good at expressing to God exactly how I feel about the situation, what I think He should do to fix it, and how messed up my life is. Don't get me wrong it's great to talk to God especially when you're frustrated but the problem is that I usually stop there. I complain, cry my heart out and then eventually fall asleep. I rarely look for the answers to the questions I just poured out at God from my heart and even when I do I rarely pay attention. So, this one particular day everything was just getting to me and I was hoping that a friend would call me. (that's one of my other problems, I always think that talking to someone will make me feel better and fix everything and you know what? It never does but I always keep trying) Anyway, this particular night I realized that no one was going to call me and I didn't need to call and talk to anyone. I needed my God. So I opened my Bible to where I last left off and I began to read Isaiah 66.
Verse 7-9 "Before she goes into labor, she gives birth; before the pains come upon her, she delivers a son. Who has ever heard of such a thing? who has ever seen such a thing? Can a country be born in a day or a nation be brought forth in a moment? Yet no sooner is Zion in labor than she gives birth to her children. 'Do I bring to the moment of birth and not give delivery?' says the Lord. 'Do I close up the womb when I bring to delivery?' says your God.
What a perfect picture. Especially being a girl I have thought many times of being pregnant and labor pains and as much as it scares me to be in that much pain I know that the pain will only last for a little while and then I will have a beautiful baby. So why is my life any different than that? God never lets us think that our lives are going to be perfect and easy. He tells us we will suffer and have trials. But He also tells us in Isaiah 66:9 that He does not bring us through pain and suffering for no reason. He will always deliver. My God always delivers. It's hard to see that now midst the pain without an epidural while life is seemingly falling apart but I will constantly remind myself that my God delivers.
I completed my first week of school. It went pretty good. This week got off to a late start with labor day and then being gone on Tuesday. Today didn't really happen either...I did school work for about an hour and then I was completely exhausted so I slept for another 3 1/2 hours...yeah, not good. I have not been motivated at all and I do not possess the gift of making myself do school work when I feel sick. I need to work on that.
I have been reading through Isaiah and the other day I came to chapter 66. When I get upset I'm very good at expressing to God exactly how I feel about the situation, what I think He should do to fix it, and how messed up my life is. Don't get me wrong it's great to talk to God especially when you're frustrated but the problem is that I usually stop there. I complain, cry my heart out and then eventually fall asleep. I rarely look for the answers to the questions I just poured out at God from my heart and even when I do I rarely pay attention. So, this one particular day everything was just getting to me and I was hoping that a friend would call me. (that's one of my other problems, I always think that talking to someone will make me feel better and fix everything and you know what? It never does but I always keep trying) Anyway, this particular night I realized that no one was going to call me and I didn't need to call and talk to anyone. I needed my God. So I opened my Bible to where I last left off and I began to read Isaiah 66.
Verse 7-9 "Before she goes into labor, she gives birth; before the pains come upon her, she delivers a son. Who has ever heard of such a thing? who has ever seen such a thing? Can a country be born in a day or a nation be brought forth in a moment? Yet no sooner is Zion in labor than she gives birth to her children. 'Do I bring to the moment of birth and not give delivery?' says the Lord. 'Do I close up the womb when I bring to delivery?' says your God.
What a perfect picture. Especially being a girl I have thought many times of being pregnant and labor pains and as much as it scares me to be in that much pain I know that the pain will only last for a little while and then I will have a beautiful baby. So why is my life any different than that? God never lets us think that our lives are going to be perfect and easy. He tells us we will suffer and have trials. But He also tells us in Isaiah 66:9 that He does not bring us through pain and suffering for no reason. He will always deliver. My God always delivers. It's hard to see that now midst the pain without an epidural while life is seemingly falling apart but I will constantly remind myself that my God delivers.
Sunday, August 29, 2010
And the verdict is...
I do not have Gastroparesis. What now Doc? So much for that perfect fit. I think it brings my body joy to torture me with all these 'negative' tests. In 5 years I think the only test that has given me any answers are the ones (i.e. the two) that diagnosed me with POTS. Beyond that I am completely normal...or so abnormal that I have fooled some of the best and brightest doc's in the business. I wish I could just quit but I know I'll never be happy if I give up even if I never get answers. At least I'm trying. Could I get a little credit for that? I don't think it's healthy for a spirit to be broken this many times in such a short period of time. I HATE medicine, I HATE tests, I am not particularly fond of doctors and I absolutely HATE POTS!! UGGHH. A word of advice; research is always good but also dangerously depressing. Take caution.
In my research today I discovered that if I pass out and someone decides to sit me up they could in fact kill me. Good to know! I also learned that although I have the medical vocabulary of most med students I understand little to non when researching actual medical sites that might actually help me understand my own body. Too bad. I think they need to sit down, think hard and write all the information they have about POTS in English and call it 'POTS: A comprehensive guide to your body in terms you can actually understand'. Just a thought.
In my research today I discovered that if I pass out and someone decides to sit me up they could in fact kill me. Good to know! I also learned that although I have the medical vocabulary of most med students I understand little to non when researching actual medical sites that might actually help me understand my own body. Too bad. I think they need to sit down, think hard and write all the information they have about POTS in English and call it 'POTS: A comprehensive guide to your body in terms you can actually understand'. Just a thought.
Thursday, August 26, 2010
Isaiah 53 and me...
Today starts my first day of online classes. I'm kinda nervous I'm gonna screw this up but generally excited to finally have something to do! Maybe now I won't feel so lazy. I am taking 15 course credits this semester so it shouldn't be too much to keep up with. One of my classes is Children's Literature and I basically get to read children's book for a grade...we'll see how much I actually like that. My other classes are US History, World Civilisation, and US Economics...Exciting stuff. I am currently thinking about attending Cornerstone University next fall for a degree in Performance (Contemporary Christian Music). It sounds like an exciting program and I have decided that whether or not I feel 'well enough' to go to school I am going to get on with my life and stop waiting for it to get better. It may never get better and I don't want to look back on my life and say it was unlived.
I was reading in Isaiah last night. I read through chapter 53 and I realized that Jesus not only understands ultimate suffering He also understands my mundane sufferings as well. I encourage you to read this entire chapter. You will be blessed.
I was reading in Isaiah last night. I read through chapter 53 and I realized that Jesus not only understands ultimate suffering He also understands my mundane sufferings as well. I encourage you to read this entire chapter. You will be blessed.
Isaiah 53:3&4 "He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not. Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted."
He took on POTS. He knows what it feels like to live with POTS. I cannot identify with Him in suffering but He can identify with me. This whole chapter is really quite beautiful and amazing. It talks about Jesus' life and death long before He was ever born. But what is most amazing to me is that this chapter really emphasises Christ's sufferings in every stage of His life. From lack of beauty and afflictions to death on a cross. He suffered for me and He suffers with me. What an amazing God.
Monday, August 23, 2010
Here I am again...
I left for New York at 8:00am Friday morning and arrived there 14 hours later. Graduation was long and emotional. I can't believe I was able to finish. This year has been one of the best years of my entire life and also one of the hardest (It amazes me how often those two coincide). I have been stretched and pushed in ways I didn't know were possible. I have been challenged and tested in areas I ignored in my life. God gave me the most amazing friends this year. I was so worried I would get a roommate that I would struggle with the entire year and not only did God answer that with more than one truly amazing roommate He also gave me amazing friends. I hadn't even thought to pray for friends in general but God gave me the perfect ones anyway. He's pretty amazing like that. The down side is that it kills when you no longer see them on a day to day basis...
This year has brought on a lot of firsts... First year at college, First time on my own, First time going to ER, First time riding down a waterfall (not on purpose), First time I really saw God's sovereignty, First time I understood God's complete and unconditional love, First time counseling, First time I pulled a big prank, First time I apologized for pulling said prank, First time writing and giving devo's... I could never begin to fully describe or explain all that I have learned and all that God has taught me through out this last year. I know I have so much more to learn.
POTS makes everything more difficult...I can't even explain. I'm trying to come up with something encouraging and positive about POTS but whatever I write will just be dishonest. I'm not in a good place, POTS is not a positive thing right now, and its has been extremely painful this past year but I will say this; Although I cannot see the good POTS will bring and although I have no idea how I am supposed to live my life with POTS I am certain of one thing...God has a purpose and NOTHING in this world is random or meaningless. I may be angry and confused and frustrated now but one day I will understand God's plan and I will be able to say this was one of the 'Best and hardest times of my life' as these two words together so often describe the times in our lives that have made us who we are.
This year has brought on a lot of firsts... First year at college, First time on my own, First time going to ER, First time riding down a waterfall (not on purpose), First time I really saw God's sovereignty, First time I understood God's complete and unconditional love, First time counseling, First time I pulled a big prank, First time I apologized for pulling said prank, First time writing and giving devo's... I could never begin to fully describe or explain all that I have learned and all that God has taught me through out this last year. I know I have so much more to learn.
POTS makes everything more difficult...I can't even explain. I'm trying to come up with something encouraging and positive about POTS but whatever I write will just be dishonest. I'm not in a good place, POTS is not a positive thing right now, and its has been extremely painful this past year but I will say this; Although I cannot see the good POTS will bring and although I have no idea how I am supposed to live my life with POTS I am certain of one thing...God has a purpose and NOTHING in this world is random or meaningless. I may be angry and confused and frustrated now but one day I will understand God's plan and I will be able to say this was one of the 'Best and hardest times of my life' as these two words together so often describe the times in our lives that have made us who we are.
Thursday, August 19, 2010
Day of torture complete...
Had my test today and was finally able to eat!! Yesterday was excruciating. I felt horrible with extreme nausea and a massive migraine. Eating is good for your body. Just saying. No food and it revolts. Surprisingly today I haven't been all that hungry. Weird huh? Anyway for the test I had the privilege of eating radioactive eggs. Then they periodically took pictures of my digesting food for about an hour and a half. It was painless...except for the whole day before thing. Glad to have it over.
Started packing today for my trip!! Trying to get everything ready; ipod, camera battery, nails...etc. I'm a few things and 15 hours short of walking out the door and getting on the car for about 13 hours. Never fear, I have my ipod charged with new music to check out, crayons, a coloring book and my journal for when I get creative, DVDs, a good book, and my thoughts to occupy my time. I shouldn't be too bored. I am so very excited to see all my friends, this weekend should be a blast.
Started packing today for my trip!! Trying to get everything ready; ipod, camera battery, nails...etc. I'm a few things and 15 hours short of walking out the door and getting on the car for about 13 hours. Never fear, I have my ipod charged with new music to check out, crayons, a coloring book and my journal for when I get creative, DVDs, a good book, and my thoughts to occupy my time. I shouldn't be too bored. I am so very excited to see all my friends, this weekend should be a blast.
Tuesday, August 17, 2010
Tests, stress, and a weekend with the best...
My Gastric Emptying test is scheduled for 8:00am on Thursday which means no food or pills 24 hours prior. I have posted notes on the fridge and pantry doors to remind myself not to eat. I will be drinking a lot!! Especially drinks high in sodium and electrolytes. I apologize in advance for my crankiness and short temper. Remember, I will not have eaten, my blood pressure will be lower than usual and I can't eat salt to fix it, and I will not be able to take medicine for my nausea. You have been warned. I am excited to finally be taking this test and hopefully it will help the doctors help me feel better.
This college thing is not going well for me so far. I went to sign up for my online classes and most all of them are filled. I need to take at least 12 course credits to hold off the payment of student loans. Right now I am signed up for 11 credits and am optimistically awaiting someone to drop a math or english class. Needless to say I am stressed. I don't understand why or how I always do this to myself but here I am once again.
Exciting news!! I will be back in Pottersville, NY this weekend to see all my BI friends...and graduate, of course. It will be a very long drive so I will most likely feel horrible while I am there but I'm hoping I feel good enough to enjoy being with my friends. If not I'll fake hard and crash when I get home =] I'm such a good faker I fool myself sometimes. But my mom is usually there to remind me how I've really been feeling! When people ask I just get so used to saying I'm OK that sometimes I really believe that I am...until I think for a minute about the week I just spent watching movies on my bed because I felt too sick to even sit up. Yeah, that's when it all comes back to me. I prefer to fool myself.
This college thing is not going well for me so far. I went to sign up for my online classes and most all of them are filled. I need to take at least 12 course credits to hold off the payment of student loans. Right now I am signed up for 11 credits and am optimistically awaiting someone to drop a math or english class. Needless to say I am stressed. I don't understand why or how I always do this to myself but here I am once again.
Exciting news!! I will be back in Pottersville, NY this weekend to see all my BI friends...and graduate, of course. It will be a very long drive so I will most likely feel horrible while I am there but I'm hoping I feel good enough to enjoy being with my friends. If not I'll fake hard and crash when I get home =] I'm such a good faker I fool myself sometimes. But my mom is usually there to remind me how I've really been feeling! When people ask I just get so used to saying I'm OK that sometimes I really believe that I am...until I think for a minute about the week I just spent watching movies on my bed because I felt too sick to even sit up. Yeah, that's when it all comes back to me. I prefer to fool myself.
Sunday, August 15, 2010
Who knew...
Last night I was hurting. Sometimes it just feels like some one has stabbed a knife into my heart and disguised it as POTS. I try to be understanding and content but that does not always come easy and if I don't pay attention that contentment slips away. I have tried to figure out God's reasons for giving me POTS for years. I've asked God why over and over and it has seemed like He's ignoring me. The real problem is that I am not paying attention. It's still hard for me to see reason amongst POTS when all I can see is what I am missing and all of the ministry opportunities I am too sick to do. People have told me over the years that I am an encouragement to them and I always took it as another cliche that people use when they don't know what to say. But this year God gave me an amazing roommate who showed me I can still make a difference for God and that I had encouraged her personally. I was beginning to see that one of the reasons God gave me POTS was to encourage others, still I had not quite grasped that concept or felt that I had the ability to encourage.
I started writing this blog because I thought venting might help me cope with this illness but after beginning to write my story I just felt it was too depressing and no one would be interested in the ramblings of a peculiarly sick young girl. Despite the encouragement from my roommates to write this blog I put it on hold. Months later I felt like it was time to explain myself to whoever would listen. Since starting this blog I have received messages, some from people I know and some complete strangers, just to tell me that I had encouraged them in some small way. Some of these people have POTS and some do not but the fact that they have taken time to let me know I have encouraged them has been extremely encouraging to me. I'm starting to see that maybe what I thought was a cliche was really God showing me that I could still impact lives in some small way.
Last night I was crying out to God for answers. This morning a complete stranger wrote me a note telling me how my blog has encouraged them but really I was the one who was encouraged. If a complete stranger can take the time to tell me I'm an encouragement than I guess it must be true. It wasn't cliche and they had no obligation to comfort me. It was just a random act of kindness. Well, nothing is random with my God! I didn't think it was possible for me to be an encouragement but I thank God for the opportunity to be an encouragement in someones life. I hope and pray you are encouraged by what you read and that you come to the realization that true healing and contentment can only come through God. It doesn't always come easy but He guarantee's it will come.
I started writing this blog because I thought venting might help me cope with this illness but after beginning to write my story I just felt it was too depressing and no one would be interested in the ramblings of a peculiarly sick young girl. Despite the encouragement from my roommates to write this blog I put it on hold. Months later I felt like it was time to explain myself to whoever would listen. Since starting this blog I have received messages, some from people I know and some complete strangers, just to tell me that I had encouraged them in some small way. Some of these people have POTS and some do not but the fact that they have taken time to let me know I have encouraged them has been extremely encouraging to me. I'm starting to see that maybe what I thought was a cliche was really God showing me that I could still impact lives in some small way.
Last night I was crying out to God for answers. This morning a complete stranger wrote me a note telling me how my blog has encouraged them but really I was the one who was encouraged. If a complete stranger can take the time to tell me I'm an encouragement than I guess it must be true. It wasn't cliche and they had no obligation to comfort me. It was just a random act of kindness. Well, nothing is random with my God! I didn't think it was possible for me to be an encouragement but I thank God for the opportunity to be an encouragement in someones life. I hope and pray you are encouraged by what you read and that you come to the realization that true healing and contentment can only come through God. It doesn't always come easy but He guarantee's it will come.
Friday, August 13, 2010
More Doctors...
Saw my new doctor on Wednesday. Seemed to go well, she didn't have much new to say. Finally have my appointment for the gastric emptying test on August 19th. Over the past couple weeks my stomach has handled less and less food. I can eat a small burger and feel like I've over eaten for hours or even into the next day. Hopefully this test will show what's going on. It's kinda frusterating eating small meals every few hours. I have been extra exhausted this week and I've at least had enough energy for the past few days to get ready before the nausea really kicks in. I have been wearing my stockings everyday and they seem to be helping to an extent. My doctor told me the other day that I do not have the correct compression for my stockings. She told me that if I'm not struggling to put them on then they are not tight enough. =[ I thought I was just getting stronger! lol
Sunday, August 8, 2010
My nutshell...
Today I was finally able to get ready and go to church! I put on my lovely stockings, drugged myself up and started my very long, busy day.
8:15 Woke up and got ready.
9:10 Off to worship practice.
9:35 Practiced my special music for the morning service.
9:45 Helped teach Sunday school (thank you mom for taking over).
10:45 Sunday school is over.
11:00 Service starts.
1:30 Having lunch with about 30 other people at our house.
2:30 I sneak to my room to lay down and watch Bones =]
3:30 I update my blog.
3:32 Back to Bones!
*POTS update* I ate too much and my stomach is still upset but my drugs are working so my nausea isn't too bad! It's been a pretty good day so far.
4:35 Time to sleep.
5:30 Time to wake up for church
6:00 Church starts
6:15 I get an adoring look for the most wonderful boy =]
7:00 Church is done
7:15 Sunday Night Fusion at my house=Youth group comes over, we hang out, play games
7:30 Catchphrase has begun. Amazing game
8:00 Watch the boys (and Rachelle) play 500
9:30 Connor moves Andy's car. Which was possible because he left his keys on the dash with the window down
9:35 Andy finally finds his keys...right where he left them.
10:00 Everyone leaves and I update my blog post.
10:04 Trying to decide whether I am going to eat some lactose free ice cream covered in melted peanut butter...
10:05 Going to get said ice cream =]
10:09 Eating my delicious ice cream
10:10 Back to Bones
10:55 Spending time with my God
*Today's passage* Isaiah 38 Oh how perfect! This Chapter is entitled 'Hezekiah's Illness'.
Three things we can apply to our own illness' and troubles:
1) It is not wrong to be upset. v.3b After King Hezekiah was told by the prophet Isaiah that he was going to die he cried out to the Lord and then wept. He balled his eyes out! I struggle with the misconception that crying means I am not trusting God but that is just not true. He gives us emotions along with trials because he wants us to feel the pain. Not in a sadistic way but in a loving fatherly way. We need to experience the pain in order for God to use it for good in our lives.
2) It is not wrong to ask for healing. v.2-3a & 5 Hezekiah prayed for God to restore him and in return God gave him 15 extra years. God is the great physician! He knows and understands everything about POTS. He knows what symptoms I have and how they affect me, he knows what I've had to give up, he can see what is not functioning properly without doing any tests, he never bills my insurance, I don't have to worry about a co-pay and he sees me without an appointment!
3) Hezekiah was a writer. v.9-20 Yay!! He released his emotions, frustration and gratitude, by writing down what he felt. He starts out by expressing that he felt cheated. He then said that he was troubled which I think it's safe to compare being troubled to being depressed. It was hard on him emotionally. Then he switches gears by saying 'But what can I say?' He knew there was no point to complaining and staying down. He realizes that this happened to bring good in his life 'Surley it was for my benefit that I suffered such anguish'. He trusted that God had a plan and a purpose.
11:35 I'm again blow away by God's sovereignty and power
11:37 Time to go to bed. I'm exhausted!
8:15 Woke up and got ready.
9:10 Off to worship practice.
9:35 Practiced my special music for the morning service.
9:45 Helped teach Sunday school (thank you mom for taking over).
10:45 Sunday school is over.
11:00 Service starts.
1:30 Having lunch with about 30 other people at our house.
2:30 I sneak to my room to lay down and watch Bones =]
3:30 I update my blog.
3:32 Back to Bones!
*POTS update* I ate too much and my stomach is still upset but my drugs are working so my nausea isn't too bad! It's been a pretty good day so far.
4:35 Time to sleep.
5:30 Time to wake up for church
6:00 Church starts
6:15 I get an adoring look for the most wonderful boy =]
7:00 Church is done
7:15 Sunday Night Fusion at my house=Youth group comes over, we hang out, play games
7:30 Catchphrase has begun. Amazing game
8:00 Watch the boys (and Rachelle) play 500
9:30 Connor moves Andy's car. Which was possible because he left his keys on the dash with the window down
9:35 Andy finally finds his keys...right where he left them.
10:00 Everyone leaves and I update my blog post.
10:04 Trying to decide whether I am going to eat some lactose free ice cream covered in melted peanut butter...
10:05 Going to get said ice cream =]
10:09 Eating my delicious ice cream
10:10 Back to Bones
10:55 Spending time with my God
*Today's passage* Isaiah 38 Oh how perfect! This Chapter is entitled 'Hezekiah's Illness'.
Three things we can apply to our own illness' and troubles:
1) It is not wrong to be upset. v.3b After King Hezekiah was told by the prophet Isaiah that he was going to die he cried out to the Lord and then wept. He balled his eyes out! I struggle with the misconception that crying means I am not trusting God but that is just not true. He gives us emotions along with trials because he wants us to feel the pain. Not in a sadistic way but in a loving fatherly way. We need to experience the pain in order for God to use it for good in our lives.
2) It is not wrong to ask for healing. v.2-3a & 5 Hezekiah prayed for God to restore him and in return God gave him 15 extra years. God is the great physician! He knows and understands everything about POTS. He knows what symptoms I have and how they affect me, he knows what I've had to give up, he can see what is not functioning properly without doing any tests, he never bills my insurance, I don't have to worry about a co-pay and he sees me without an appointment!
3) Hezekiah was a writer. v.9-20 Yay!! He released his emotions, frustration and gratitude, by writing down what he felt. He starts out by expressing that he felt cheated. He then said that he was troubled which I think it's safe to compare being troubled to being depressed. It was hard on him emotionally. Then he switches gears by saying 'But what can I say?' He knew there was no point to complaining and staying down. He realizes that this happened to bring good in his life 'Surley it was for my benefit that I suffered such anguish'. He trusted that God had a plan and a purpose.
11:35 I'm again blow away by God's sovereignty and power
11:37 Time to go to bed. I'm exhausted!
Friday, August 6, 2010
Acting like there are no symptoms...
I realize I have not yet put up a complete list of symptoms for POTS so I thought this would be the perfect time. You can learn more about the affects of POTS while also learning more about why I am the way I am. Here's what I'm going to do, I'm going to list symptoms along with a comment or two and a rating from 1-10 (10 being worst) of how I am affected by each symptom. For those of you who know me you may not think of me as an actor but when have you been able to look at me and see how sick I really feel? I'm a better actor than you thought.
• light-headedness or a spacey feeling = 8
This mainly comes on upon standing. Those few seconds where I start to blackout and feel faint-ish.
• dizziness = 3
Sometimes watching movies where the camera moves around a lot or a lot of action.
• fainting/near fainting = 8
I have not fainted but I have come really close a few times...those were not good times.
• dimming of vision = 4
This really only happens when I stand up for a few short seconds.
• nausea = 10
Nausea is by far my number one worst symptom. It's loyal, it never leaves my side.
• fatigue = 9
Feeling too tired to get up but not tired enough to sleep. See also Frustration!
• exercise intolerance = 7
It's hard to exercise when that is the one main thing that makes you sick. It's a balance.
• muscle aches = 5
Who knew your muscles could ache without even working out?
• headaches/migraines = 7
I get these quite often. The really bad ones can lead to extreme extreme nausea. Not fun.
• tachycardia = 6
For those of you who don't know what this is it is when your heart starts beating rapidly or violently.
• palpitations = 4
For those of you who don't know what this is it is when your heart starts beating abnormally.
• weakness = 8
I am incredibly weak. If anyone ever attacked me I would die.
• shakiness = 7
I can get really shaky when my POTS is bad. Even when it's not visible I can feel it.
• clamminess = 9
Shaking hands is always awkward. Good thing I never had a boyfriend.
• anxiety = 7
I have definitely worried a lot more since I got POTS.
• shortness of breath = 6
I'm not sure if most of my shortness of breath is from POTS or asthma.
• mental confusion such as: brain fog, trouble staying on task, remembering, and finding the right words to say, difficulty concentrating = 8
The last too are the worst, and you can imagine how much I like to find the right words.
• chest pain or chest tightness = 3
This comes and goes but it's never serious.
• Gastrointestinal problems = 7
Not sure if it's anything real major but eating no longer has pleasure...
• sleeping disorders = 5
Lack of sleep can instantly take my day running down hill.
• lower back pain = 7
This is especially unhelpful when I'm too sick to get out of bed.
• excessive fatigue = 9
I am exhausted all the time. Sitting up exhausts me.
• intolerance to heat = 10
I can be outside for all of two minuets but even in that short time my nausea can double.
• light and noise sensitivity = 2
As much as I love music, I love being able to listen to it without my eardrums hurting.
• light-headedness or a spacey feeling = 8
This mainly comes on upon standing. Those few seconds where I start to blackout and feel faint-ish.
• dizziness = 3
Sometimes watching movies where the camera moves around a lot or a lot of action.
• fainting/near fainting = 8
I have not fainted but I have come really close a few times...those were not good times.
• dimming of vision = 4
This really only happens when I stand up for a few short seconds.
• nausea = 10
Nausea is by far my number one worst symptom. It's loyal, it never leaves my side.
• fatigue = 9
Feeling too tired to get up but not tired enough to sleep. See also Frustration!
• exercise intolerance = 7
It's hard to exercise when that is the one main thing that makes you sick. It's a balance.
• muscle aches = 5
Who knew your muscles could ache without even working out?
• headaches/migraines = 7
I get these quite often. The really bad ones can lead to extreme extreme nausea. Not fun.
• tachycardia = 6
For those of you who don't know what this is it is when your heart starts beating rapidly or violently.
• palpitations = 4
For those of you who don't know what this is it is when your heart starts beating abnormally.
• weakness = 8
I am incredibly weak. If anyone ever attacked me I would die.
• shakiness = 7
I can get really shaky when my POTS is bad. Even when it's not visible I can feel it.
• clamminess = 9
Shaking hands is always awkward. Good thing I never had a boyfriend.
• anxiety = 7
I have definitely worried a lot more since I got POTS.
• shortness of breath = 6
I'm not sure if most of my shortness of breath is from POTS or asthma.
• mental confusion such as: brain fog, trouble staying on task, remembering, and finding the right words to say, difficulty concentrating = 8
The last too are the worst, and you can imagine how much I like to find the right words.
• chest pain or chest tightness = 3
This comes and goes but it's never serious.
• Gastrointestinal problems = 7
Not sure if it's anything real major but eating no longer has pleasure...
• sleeping disorders = 5
Lack of sleep can instantly take my day running down hill.
• lower back pain = 7
This is especially unhelpful when I'm too sick to get out of bed.
• excessive fatigue = 9
I am exhausted all the time. Sitting up exhausts me.
• intolerance to heat = 10
I can be outside for all of two minuets but even in that short time my nausea can double.
• light and noise sensitivity = 2
As much as I love music, I love being able to listen to it without my eardrums hurting.
Thursday, August 5, 2010
A little bit of the past...
It's been a little while and honestly I've clicked on 'New Post' about 30 times in the last few days. I even wrote an entire post about compression stockings...it was boring.
So, what to write about...I've been pretty sick for the past few weeks and around this time is where I get frustrated. I don't know if I can handle a job right now (not to mention I have no idea what city to apply in) but I need to do something. Not only for money but also sanity. I need to feel like I'm accomplishing something. I need to feel driven.
These past few weeks have been filled by Hulu.com, Facebook, movies, itunes, guitar, scrap booking, eating, cooking, sleeping, shifting position, staring at my unclean room in disgust, wishing I had the energy and desire to be productive, and last, but certainly not least, wishing I felt...healthy. POTS isn't all bad, it gives my friends something to joke about (which I could really use right now). I realized this year with being away at college that my family doesn't joke about POTS. Now, if you know me you know I'm a joker. That's my number 1 way of dealing with things, along with silence and TV. The difference between my family and friends way of viewing POTS is this; My friends really only understand a small part of POTS and how it affects me so their response is to make me laugh while my parents fully understand POTS and how it affects me. My family (obviously) knows what my life used to be and how much it has changed. Neither of these responses are right or wrong I just wish my family could find the funny in all this and that my friends could understand the serious.
To my friends: When I was a young child I was very energetic. Yes, it's true. I literally bounced around the house. I played T-ball but that was just a cover to talk. That's what I considered outfield, talking time (it's not like many kids hit it out that far anyway). I loved hanging out with my favorite neighbor Mr. Graham. So much so that I would sneak out of the house and run down the street to see him which of course only landed me with a spanking. I did this repeatedly. One day my mother finally asked, "You know you're going to get a spanking, right?" "yes." Thinking she was finally on to a solution she asked "Was it worth it?" and of course I replied "Yes." I was stubborn. As I got older I learned to ride a bike and was constantly riding it. I also learned that I love Soccer. My favorite position was mid-field. I ran the whole field for the whole game...ironic, huh? My favorite things to do were play with the boys. I loved cops and robbers (partially because I had a shorter 'death' time because I was a girl), riding my bike all over town, jumping on our trampoline, and exploring all I could. I was a tom-boy for the most part. As I continued to get older Volleyball became my number 1 sport. I always liked school and never had problems with my grades. I could remember everything so I never really learned how to study. Basically what I'm trying to say is that I had a very energetic, active childhood...right up until POTS.
POTS has changed a lot about my life and although I try to stay positive there are times it has really brought me down. It has held me back from ministry opportunities, job opportunities, from seemingly doing anything producive and most of the time everything feels like a waste. Especially college. Not just the actual action of going to college but also the job opportunities it will bring. Will I ever be able to finish college? Or get a real full-time job? Can I even handle raising kids? I think about this stuff a lot and it scares me. But along with all the scares and uncertainties that POTS has brought, it has also brought me closer to my God. God has opened my eyes to see that He has been trying my whole life to get me to trust Him and I think POTS was the last straw. At first I pulled away from God. I was angry, hurt and confused but over the last few years I have slowly grown closer and closer to Him as I have learned to trust Him. My problem is no longer trust. It has now become contentment but as I have learned to trust while my world unravelled I will learn to be content whether He chooses to knit it back together or leave it a mess. Have your way, Lord.
So, what to write about...I've been pretty sick for the past few weeks and around this time is where I get frustrated. I don't know if I can handle a job right now (not to mention I have no idea what city to apply in) but I need to do something. Not only for money but also sanity. I need to feel like I'm accomplishing something. I need to feel driven.
These past few weeks have been filled by Hulu.com, Facebook, movies, itunes, guitar, scrap booking, eating, cooking, sleeping, shifting position, staring at my unclean room in disgust, wishing I had the energy and desire to be productive, and last, but certainly not least, wishing I felt...healthy. POTS isn't all bad, it gives my friends something to joke about (which I could really use right now). I realized this year with being away at college that my family doesn't joke about POTS. Now, if you know me you know I'm a joker. That's my number 1 way of dealing with things, along with silence and TV. The difference between my family and friends way of viewing POTS is this; My friends really only understand a small part of POTS and how it affects me so their response is to make me laugh while my parents fully understand POTS and how it affects me. My family (obviously) knows what my life used to be and how much it has changed. Neither of these responses are right or wrong I just wish my family could find the funny in all this and that my friends could understand the serious.
To my friends: When I was a young child I was very energetic. Yes, it's true. I literally bounced around the house. I played T-ball but that was just a cover to talk. That's what I considered outfield, talking time (it's not like many kids hit it out that far anyway). I loved hanging out with my favorite neighbor Mr. Graham. So much so that I would sneak out of the house and run down the street to see him which of course only landed me with a spanking. I did this repeatedly. One day my mother finally asked, "You know you're going to get a spanking, right?" "yes." Thinking she was finally on to a solution she asked "Was it worth it?" and of course I replied "Yes." I was stubborn. As I got older I learned to ride a bike and was constantly riding it. I also learned that I love Soccer. My favorite position was mid-field. I ran the whole field for the whole game...ironic, huh? My favorite things to do were play with the boys. I loved cops and robbers (partially because I had a shorter 'death' time because I was a girl), riding my bike all over town, jumping on our trampoline, and exploring all I could. I was a tom-boy for the most part. As I continued to get older Volleyball became my number 1 sport. I always liked school and never had problems with my grades. I could remember everything so I never really learned how to study. Basically what I'm trying to say is that I had a very energetic, active childhood...right up until POTS.
POTS has changed a lot about my life and although I try to stay positive there are times it has really brought me down. It has held me back from ministry opportunities, job opportunities, from seemingly doing anything producive and most of the time everything feels like a waste. Especially college. Not just the actual action of going to college but also the job opportunities it will bring. Will I ever be able to finish college? Or get a real full-time job? Can I even handle raising kids? I think about this stuff a lot and it scares me. But along with all the scares and uncertainties that POTS has brought, it has also brought me closer to my God. God has opened my eyes to see that He has been trying my whole life to get me to trust Him and I think POTS was the last straw. At first I pulled away from God. I was angry, hurt and confused but over the last few years I have slowly grown closer and closer to Him as I have learned to trust Him. My problem is no longer trust. It has now become contentment but as I have learned to trust while my world unravelled I will learn to be content whether He chooses to knit it back together or leave it a mess. Have your way, Lord.
Monday, August 2, 2010
Gastroparesis and the like...
I am currently in the process of studying and re-learning mathematics for my assessment exam coming up. I get to take the exam whenever I feel like it which is kinda nice but could also kill me as I am slightly terrified of taking this test and now have the opportunity to put it off. I am shooting for next Monday so I'll let you know how it goes.
In other news, I am currently dealing with tummy troubles. They have been occurring for about 6 hours now and are beginning to frustrate. I thought I just ate too much but after an hour I figured there was more to this tummy story. My doctor ordered me a gastric emptying test (which is not scheduled yet as the flighty receptionist has not called me back) which tests for gastroparesis.
Gastroparesis: Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and play havoc with blood sugar levels and nutrition.
http://www.bing.com/health/article/mayo-126300/Gastroparesis?q=gastroparesis&qpvt=gastroparesis
I have an appointment with my POTS doctor on the 11th. Her plan for the two weeks between appointments was for me to where my stockings everyday (they are a pain, not to mention a struggle to get on), drink 100-140 oz. of water per day (which has not happened yet but I am drinking about 95% more than I used to) and take a new prescription that is supposed to help ward off headaches as I get those almost daily (not too fond of pills but been doing well so far). By far the hardest thing has been drinking more water. I have to drink slowly as water makes me kinda nauseous (weird huh?), I feel it sloshing around in my stomach and I am currently considering taking permanent residence in the bathroom.
On a more exciting note, I am planning on adding some humor to this sorta depressing blog... not quite sure what that's gonna look like as most POTS humor is not found humorous by non-POTS patients. Maybe it will make you laugh even if you don't understand. I will be expecting comments.
In other news, I am currently dealing with tummy troubles. They have been occurring for about 6 hours now and are beginning to frustrate. I thought I just ate too much but after an hour I figured there was more to this tummy story. My doctor ordered me a gastric emptying test (which is not scheduled yet as the flighty receptionist has not called me back) which tests for gastroparesis.
Gastroparesis: Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and play havoc with blood sugar levels and nutrition.
http://www.bing.com/health/article/mayo-126300/Gastroparesis?q=gastroparesis&qpvt=gastroparesis
I have an appointment with my POTS doctor on the 11th. Her plan for the two weeks between appointments was for me to where my stockings everyday (they are a pain, not to mention a struggle to get on), drink 100-140 oz. of water per day (which has not happened yet but I am drinking about 95% more than I used to) and take a new prescription that is supposed to help ward off headaches as I get those almost daily (not too fond of pills but been doing well so far). By far the hardest thing has been drinking more water. I have to drink slowly as water makes me kinda nauseous (weird huh?), I feel it sloshing around in my stomach and I am currently considering taking permanent residence in the bathroom.
On a more exciting note, I am planning on adding some humor to this sorta depressing blog... not quite sure what that's gonna look like as most POTS humor is not found humorous by non-POTS patients. Maybe it will make you laugh even if you don't understand. I will be expecting comments.
Sunday, August 1, 2010
POTS and college...
I am now officially enrolled in online classes through Lancing Community College! Taking classes online will give me a lot more flexibility in my schedule and most importantly help me continue my education even though I am too sick at this point to attend a regular college. I can do my classes in bed! Which is where I spend most of my time =] I am very excited. I'm not exactly sure what classes I will be taking yet, I need to talk to an advisor on Monday, but my classes will be mostly made up of GenEds. Along with adding classes to MY schedule online classes, especially through a community college, are very inexpensive.
I started thinking about online classes when I was at Word of Life. I knew I would most likely not be well enough by fall to attend any college (My body does not respond well to a set schedule). As I was already planning on taking online classes my dad resigned from his job as Senior pastor at our church. There is now a cloud of uncertainty hovering over our family. We don't know where we will be living in the next few months as it is very likely we will have to move so my dad can have a job. God knew all of this before I did. He knew online classes would be the best thing for me in more ways than one. So no matter where we will be I don't have to worry about what will happen with my schooling because I can take it with me! Online classes are quite convenient.
I started thinking about online classes when I was at Word of Life. I knew I would most likely not be well enough by fall to attend any college (My body does not respond well to a set schedule). As I was already planning on taking online classes my dad resigned from his job as Senior pastor at our church. There is now a cloud of uncertainty hovering over our family. We don't know where we will be living in the next few months as it is very likely we will have to move so my dad can have a job. God knew all of this before I did. He knew online classes would be the best thing for me in more ways than one. So no matter where we will be I don't have to worry about what will happen with my schooling because I can take it with me! Online classes are quite convenient.
Saturday, July 31, 2010
And so it begins...
I have been off all medications except Zofran for about 2 months. I just recently saw a new doctor who specializes in POTS. She has prescribed over-the-counter drugs for acid indigestion as I have had difficulty eating without upsetting my stomach along with difficulty drinking water as water also makes me feel nauseous and sick. She has also upped my dosage of Zofran which I take as needed for nausea. I wear compression support stockings. Compression being from 35-40. They are a pain to put on and are quite uncomfortable but they help keep my blood pressure in a safe range as they literally squeeze the blood from my legs back to my heart.
The past few weeks I have felt debilitating nausea and light-headedness. I have been in bed for the most part. As I am writing this I should probably lay down as I have been sitting up for a couple hours working on this blog. When I start a project I like to finish it but unfortunately that is not always the best for my condition.
I am trying to stay optimistic even though I can feel the energy draining from my body. I was able to sleep in today and that was nice. I have been in bed most of the day writing and watching TV online. I hate feeling lazy, like I'm always wasting my day. I need to do things that I can consider productive. Hence this blog and playing guitar. Oh, and my nails have never looked better! My room needs to be cleaned...just waiting for the energy to start that project...it hasn't come yet.
Well it is 3:08 and I don't feel that great (no, rhyming was not intentional) so I think I will watch some more TV. Hopefully I will be able to be more productive after that...We'll see how it goes.
The past few weeks I have felt debilitating nausea and light-headedness. I have been in bed for the most part. As I am writing this I should probably lay down as I have been sitting up for a couple hours working on this blog. When I start a project I like to finish it but unfortunately that is not always the best for my condition.
I am trying to stay optimistic even though I can feel the energy draining from my body. I was able to sleep in today and that was nice. I have been in bed most of the day writing and watching TV online. I hate feeling lazy, like I'm always wasting my day. I need to do things that I can consider productive. Hence this blog and playing guitar. Oh, and my nails have never looked better! My room needs to be cleaned...just waiting for the energy to start that project...it hasn't come yet.
Well it is 3:08 and I don't feel that great (no, rhyming was not intentional) so I think I will watch some more TV. Hopefully I will be able to be more productive after that...We'll see how it goes.
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