So I went to the rheumatologist yesterday and I LOVED him. He is very young (literally the same age as me basically) and so he is up to date on everything and still passionate because he is not burnt out yet. Basically, everyone at the office was super nice from the check in person to the nurse to the lab people to everyone...especially the doctor. I have seen my fair share of doctors (see last blog post) and the only doctor I've ever really liked a whole lot is Dr. Brown who was my general physician in Salisbury. I didn't like him all the time though, at the beginning he was like all the others and didn't believe me and blah blah...but once he believed me he was like my best friend. He really tried hard to help me, he never didn't believe me about anything again, he trusted what I told him I was feeling and what I thought I needed to do for me, and backed me up when he wanted me to quit and I wanted to keep working. He supported me and you could tell he truly cared for me. One of the reasons leaving Salisbury was so hard was because I couldn't believe I would find another doctor quite as amazing as Dr. Brown. I may have come close yesterday though.
I mentioned to the nurse yesterday (when she mentioned my blood pressure was sky rocket high which is really abnormal for me since it is usually near rock bottom) I was nervous about the appointment...which is also a little abnormal for me because I've basically done nothing for the past 2 years but go from doctor to doctor and test after test. But when he came in and asked me why I was scared to be there and I told him I wasn't nervous about tests or anything but that I was scared he wouldn't believe me. I gave a little of my background and how I had not been at all supported by the majority of my dr's and I just wanted someone to believe me and figure out what was wrong with me. He assured me that he would believe everything I told him unless I gave him a reason not to and that I could ask questions at any time and he would figure out what was wrong with me. At first, I didn't care what was wrong with me, I just wanted answers. Well, after spending 2 hours with me (yes a specialist that spent 2 hours with me in one appointment...unheard of I know)...I got answers. And let me tell you, I'm so grateful that I was eating dinner and hanging out with my small group last night because it helped me not think about it last night, because know I am getting pretty upset about it.
So we knew I had celiac, we knew I had ulcerative colitis, orthostatic hypotension, and we knew that I had tons of symptoms of some pretty other nasty chronic illnesses. But they weren't officially diagnosed. I found out yesterday officially that I have fibromyalgia, which is not autoimmune but is very common in people with automimmune disorders (which celiac is). I have known that I had fibromyalgia in my gut for a while, but honestly I was really hoping and praying I didn't have it. It is just another chronic illness that I have to deal with that has no cure that I have to deal with for the rest of my life. I have been in intense pain every day for the past 2-5 years and while yes it is nice to be able to say I have this illness, it's not in my head, there is someone who believes me, there is a name for this...I really wish it was something fixable. Something I could just have surgery for and it would be better...something they've missed on one of my MRI's or CT scans. But no, I have fibromyalgia. The only "treatment" he said there is for fibromyalgia is to exercise for 1 hour a day (which I can't do very well because of my other problems) and to sleep for 8 hours a night. There are fibro drugs out there, but he doesn't like medications and he doesn't think the fibro drugs really work. He did give me a med to help my nerves be less stimulated at night to curb the pain some so I can sleep at night and get my 8 hours in.
So after he tells me I have firbo (which is diagnosed by pushing trigger points all over your body and seeing the response to pain from this) he says he's going to do TONS more labs because he thinks I have several other problems too. These range from vitamin b12 and vitamin d deficiency all the way to he is pretty sure I have lupus too. I swear if I have lupus too, I almost want to give up. Literally every body system and organ in my body will have been attacked if I get lupus too. I am so over this. I know I said I wanted answers, but I want cureable, fixable answers. I know I should count my blessings because they aren't saying cancer and I have 3 months to live...but seriously a lifetime of chronic pain all over your entire body...and diseases that attack your organs one by one until they all fail eventually (not that this would happen for a long time, but still faster than healthy people)...and specialized diets...and exercising...and etc etc that I have to deal with already. Why can't I have a cold or the flu? Something that comes for a day or two and then leaves your body alone. My fingers are in so much pain right now from typing I can't even explain that...from typing...and I have that to look forward to for the res of my life. Walking through walmart today almost killed me because there floors are too hard...for the rest of my life I have that to look forward too. But I have a rest of my life to look forward to I guess.
This week in small group the "respectable sins" we studied were ungodliness and unthankfullnes. And let me tell you, the thoughts I have had today are pretty ungodly and unthankful. I am thankful I have an answer, I am just not thankful for the answer. I will get over it though, I always do. When I first started this blog, I talked about how it would be a beautiful, peaceful journey. Right now I feel like I am falling off the edge of a cliff. I am exhausted, irritable, in pain all the time, can barely make it through the school day and still have homework when I get home...but I know it will still be a beautiful journey. I also know that I am thankful that I have met some awesome girls here that I can hang out with to help me stay focused so that I don't get discouraged as easily. Anyways, know both my arms are going numb so I really need to stop typing...so have a good night..and I will blog again soon.
Saturday, January 28, 2012
Tuesday, January 24, 2012
Preach the Gospel to yourself every day
Not much has changed since I blogged last, now my life pretty much consists of go to school, sit through class in pain, try to retain information while I do it, then come home and go to bed. In between classes I hang out in the commuter lounge and do my homework so that I don't have to worry about that when I get home because by the time I get home I am so exhausted and hurt so bad I can barely think, let alone do homework. On days where I have a longer break between classes, I come home and take a nap and eat lunch then go back. I am doing really well academically in my classes though and am enjoying the content I am learning. I just wish that it didn't hurt so bad. Honestly, some days, especially lately I don't know if I even want to be in school. I am so tired and so irritable because I am so tired. Then I'm like, in my head, well now I have disability so I don't technically have to go back to school. But I also don't want to live off the government forever and I don't want to be not a productive citizen for the rest of my life. I want to be able to get this degree so that I can do something productive and good for society, I just don't want it to make me this tired and make me hurt this bad. Hopefully, I will get through it...only like 13 more weeks this semester...haha...
Anyways, this weekend it was super icy here and they declared a level 1 emergency state because of the ice which means that no one is supposed to be driving because of how bad the ice is and you can even get a ticket if you are caught on the roads. Well, I still have been having some minor issues driving under normal circumstances because my muscles are weaker and I have slower reaction times so I knew that I for sure was not going anywhere this weekend because I would for sure wreck on ice. Therefore, I had a nice relaxing weekend in my bed which I needed after the previous week at school. The only time I really left the house was on Saturday night. We threw a surprise party for my cousin's baby shower. We told her we were getting together for her birthday (which was MLK, Jr day) and had her baby shower instead. Long reason why...but the only thing you need to know is it was a success and even with the ice (though some of it had melted by then) there were a lot of people there. Though the whole time on the way to my aunt and uncle's house I was like please don't die, etc...because I was scared even though mom kept telling me it was ok. That is pretty much all I did all weekend though. This Friday (at 2 pm for those of you who like to pray at the exact time people) I will go to yet another specialist...a rheumatologist this time and hopefully get some more answers and get on a road to recovery of my other illnesses. At this point in my quest for health of the past 2 years I've seen approximately (and I say approximately because I may have forgotten some) 1 general physician, 9 specialists (1 orthopedist, 2 neurologists, 2 cardiologists, 4 GI docs), 2 chiropractors, 3 ob/gyns, and a physical therapists. I have had about 5 or 6 CT scans, 3 MRI's, 5 colonoscopies, 1 sigmoidoscopy, probably somewhere near or over 100 tubes of blood drawn, worn a 24 hour holter monitor at least 4 times, had 8 ekgs done, 3 echocardiograms, and a tilt table test, and had 2 surgeries. I take somewhere between 10 and 15 pills a day and that is on a good day when I don't need painkillers. I get infusions of medication every 8 weeks and I get a shot every 3 months to keep me from getting huge cysts on my ovary because they don't know why I get them, but if I ovulate I get them and they won't take out my ovary like I ask them to because I'm too young and could have kids...but all my diseases cause infertility...don't ask...omg...So anyways, all this is to say, prayers would be appreciated this Friday at 2:00 PM to hopefully be the visit to close to one of the last specialists and that this one will have a right answer or at least believe me that I am sick. On to happier parts of blogging...or different anyways...
I am having a really great time with my small group. We have so much fun together, and we are trying at least to hold each other accountable for our respectable sins. The book we are doing is awesome, it reminds us that the sins that we do daily are the same as the 'big time' sins that we as Christians so commonly judge on a daily basis. I didn't realize until I started doing this study just how much I sin and how much it hurts God. Like every time I get frustrated and yell at my mom for waking me up from my nap, or every time I tell a white lie, or every time I complain about the disease that God trusted me to have because I can't be normal, or every time I on and on and on. As you can tell if you have read this entire post, being in this study has obviously not stopped me from committing "respectable sins" because I have complained about my disease in this post already among other things I am sure. I sin probably like every 0.4325 seconds and you do too...but that just makes it so much worse. Because now that I'm aware I'm sinning every 0.4325 seconds I should be able to be like okay God you did this huge thing for me...you saved my life...you sent your sin to come and die for me and I can't even do something so small as to stop sinning and hurting you. But it's impossible, that is why I am thankful beyond a shadow of a doubt for grace and forgiveness and that is why I am so incredibly mad at myself for knowing that I'm willingly hurting my God every day. But that is what we do, we sin, we ask for forgiveness, and then we sin again and then He forgives me again. UNBELIEVABLE! It is unreal the love that my God loves me with...and loves you with! It is unreal to me that my God would love me enough that the disease that I complain about every day that is so small in comparison to what he has done for me to live with He still chooses to heal me from, to let me have good days, to put dr's and friends in my life to save me from death. It is unreal to me that every time I sin it's like He says don't worry Megan, this one's on me, I got your back, you didn't really do that. Unreal. Anyways....I am done ranting about this, for now...I am now going to leave you with some Bible verses and quotes from the book that have really stuck out to me throughout this study. The quotes come from the book Respectable Sins by Jerry Bridges unless otherwise noted.
"Whoever keeps the whole law, but fails in ONE point has become accountable for ALL of it." James 2:10
"But the fact still remains that the seemingly minor sins we tolerate in our lives do indeed deserve the curse of God."
"The acceptable sins are subtle in the sense that they deceive us into thinking they are not so bad, or not thinking of them as sins, or even worse, not even thinking about them at all!"
"Christ Jesus came into the world to save sinners, of whom I am the foremost." 1 Timothy 1:5
"My memory is nearly gone; but I remember two things: that I am a great sinner, and that Christ is a great Savior." John Newton
"Preach the Gospel to yourself every day"
"Blessed are those whose lawless deeds are forgiven, and whose sins are covered; blessed is the man against whom the Lord will not count his sin." Romans 4:7-8
"If we claim that we're free of sin, we're only fooling ourselves...on the other hand, if we admit our sins--make a clean breast of them--God won't let us down; he'll be true to himself. He'll forgive our sins and purge us of all wrongdoing." 1 John 1:8-9
Anyways, this weekend it was super icy here and they declared a level 1 emergency state because of the ice which means that no one is supposed to be driving because of how bad the ice is and you can even get a ticket if you are caught on the roads. Well, I still have been having some minor issues driving under normal circumstances because my muscles are weaker and I have slower reaction times so I knew that I for sure was not going anywhere this weekend because I would for sure wreck on ice. Therefore, I had a nice relaxing weekend in my bed which I needed after the previous week at school. The only time I really left the house was on Saturday night. We threw a surprise party for my cousin's baby shower. We told her we were getting together for her birthday (which was MLK, Jr day) and had her baby shower instead. Long reason why...but the only thing you need to know is it was a success and even with the ice (though some of it had melted by then) there were a lot of people there. Though the whole time on the way to my aunt and uncle's house I was like please don't die, etc...because I was scared even though mom kept telling me it was ok. That is pretty much all I did all weekend though. This Friday (at 2 pm for those of you who like to pray at the exact time people) I will go to yet another specialist...a rheumatologist this time and hopefully get some more answers and get on a road to recovery of my other illnesses. At this point in my quest for health of the past 2 years I've seen approximately (and I say approximately because I may have forgotten some) 1 general physician, 9 specialists (1 orthopedist, 2 neurologists, 2 cardiologists, 4 GI docs), 2 chiropractors, 3 ob/gyns, and a physical therapists. I have had about 5 or 6 CT scans, 3 MRI's, 5 colonoscopies, 1 sigmoidoscopy, probably somewhere near or over 100 tubes of blood drawn, worn a 24 hour holter monitor at least 4 times, had 8 ekgs done, 3 echocardiograms, and a tilt table test, and had 2 surgeries. I take somewhere between 10 and 15 pills a day and that is on a good day when I don't need painkillers. I get infusions of medication every 8 weeks and I get a shot every 3 months to keep me from getting huge cysts on my ovary because they don't know why I get them, but if I ovulate I get them and they won't take out my ovary like I ask them to because I'm too young and could have kids...but all my diseases cause infertility...don't ask...omg...So anyways, all this is to say, prayers would be appreciated this Friday at 2:00 PM to hopefully be the visit to close to one of the last specialists and that this one will have a right answer or at least believe me that I am sick. On to happier parts of blogging...or different anyways...
I am having a really great time with my small group. We have so much fun together, and we are trying at least to hold each other accountable for our respectable sins. The book we are doing is awesome, it reminds us that the sins that we do daily are the same as the 'big time' sins that we as Christians so commonly judge on a daily basis. I didn't realize until I started doing this study just how much I sin and how much it hurts God. Like every time I get frustrated and yell at my mom for waking me up from my nap, or every time I tell a white lie, or every time I complain about the disease that God trusted me to have because I can't be normal, or every time I on and on and on. As you can tell if you have read this entire post, being in this study has obviously not stopped me from committing "respectable sins" because I have complained about my disease in this post already among other things I am sure. I sin probably like every 0.4325 seconds and you do too...but that just makes it so much worse. Because now that I'm aware I'm sinning every 0.4325 seconds I should be able to be like okay God you did this huge thing for me...you saved my life...you sent your sin to come and die for me and I can't even do something so small as to stop sinning and hurting you. But it's impossible, that is why I am thankful beyond a shadow of a doubt for grace and forgiveness and that is why I am so incredibly mad at myself for knowing that I'm willingly hurting my God every day. But that is what we do, we sin, we ask for forgiveness, and then we sin again and then He forgives me again. UNBELIEVABLE! It is unreal the love that my God loves me with...and loves you with! It is unreal to me that my God would love me enough that the disease that I complain about every day that is so small in comparison to what he has done for me to live with He still chooses to heal me from, to let me have good days, to put dr's and friends in my life to save me from death. It is unreal to me that every time I sin it's like He says don't worry Megan, this one's on me, I got your back, you didn't really do that. Unreal. Anyways....I am done ranting about this, for now...I am now going to leave you with some Bible verses and quotes from the book that have really stuck out to me throughout this study. The quotes come from the book Respectable Sins by Jerry Bridges unless otherwise noted.
"Whoever keeps the whole law, but fails in ONE point has become accountable for ALL of it." James 2:10
"But the fact still remains that the seemingly minor sins we tolerate in our lives do indeed deserve the curse of God."
"The acceptable sins are subtle in the sense that they deceive us into thinking they are not so bad, or not thinking of them as sins, or even worse, not even thinking about them at all!"
"Christ Jesus came into the world to save sinners, of whom I am the foremost." 1 Timothy 1:5
"My memory is nearly gone; but I remember two things: that I am a great sinner, and that Christ is a great Savior." John Newton
"Preach the Gospel to yourself every day"
"Blessed are those whose lawless deeds are forgiven, and whose sins are covered; blessed is the man against whom the Lord will not count his sin." Romans 4:7-8
"If we claim that we're free of sin, we're only fooling ourselves...on the other hand, if we admit our sins--make a clean breast of them--God won't let us down; he'll be true to himself. He'll forgive our sins and purge us of all wrongdoing." 1 John 1:8-9
Tuesday, January 17, 2012
school is tiring
I haven't written in forever. I have been so tired, it's not even funny. Last Monday (the 9th) I started school to get my pre-requisites for my hopefully masters degree in Dietetics. My classes have been great, so far, at least. I am meeting more people since I am in school and I am very excited about that. My classes are seeming to be easier than I thought they were going to be and I'm in classes with the 2 professors that decide who gets into the dietetics department and so far they like me. I have also so far made it to every class. However, as soon as I get home I'm in bed. I have no choice. I am tired. I mean I stay awake for the most part, but my body is done being up and about. I have also been hurting pretty badly, but I am toughing my way out through it. So far I have learned a lot and hopefully I will do well enough to get into the program, if not, oh well. My professors have also been really good so far after I talked to all of them personally with if I need to take a break or whatever that is ok. I am very thankful for this. Indiana State is a very different college from Catawba (14000 students vs 2000) and most of my classes have at least 40 people in them, one actually has about 200 people in it. However, most of my professors have already learned my name and realize that I am a little different than most "traditional students"
I also started a new small group at my church and it is awesome! There are about 7 girls and we have a blast. Some of them are married some of them are single. We eat, we talk about God and guys and have a great time. We are doing a book study by Jerry Bridges called Respectable Sins, which I highly recommend. It's all about how "Christians" have these sins that we tolerate because they aren't "as bad" as the big sins like murder and homosexuality and things like that. They are sins like pride and selfishness and gossip and things like that. Sins that we do every day and we do them so often that we don't even realize we are sinning. It is a good book. I really like my small group and hope that I become great friends with the girls.
This weekend was spent preparing and throwing my sister a graduation party because she graduated from Liberty University in December with a BS in Psychology. We had about 20 people over and I cooked most of the food for it. Some of the items included beef brisket, buffalo wings, bar b que, potato salad, muddy buddies, little football shaped chocolates, etc. It was a lot of food, but most of it got eaten thank goodness. Yesterday, my mom sister and I went out to lunch with my aunt and her kids at TGIFridays. After that I went with my aunt and cousins shopping at the mall and some other places. After that I was so exhausted and in so much pain I spent most of the rest of my day in bed. Today I went to school, went to the chiropractor, and found out I got approved for disability. I am making about 1/2 of what I made teaching but considering I had no income for the past 4 months I am so, so, so thankful that I will have income again. I told mom I could make like 200 dollars and it would be worth it. I am making more than that and I don't have many bills anymore besides my health insurance so I am way excited. I was just thinking about declaring bankruptcy because of my medical bills and what not, but I hopefully will not have to now. I am so so excited that I can take some burden off my family financially now.
Anyways, I am exhausted and in pain and have to go to school tomorrow so I think I am going to sign off now. I will try to be a better blogger, but no promises since I'm in school now.
Have a good night guys :)
I also started a new small group at my church and it is awesome! There are about 7 girls and we have a blast. Some of them are married some of them are single. We eat, we talk about God and guys and have a great time. We are doing a book study by Jerry Bridges called Respectable Sins, which I highly recommend. It's all about how "Christians" have these sins that we tolerate because they aren't "as bad" as the big sins like murder and homosexuality and things like that. They are sins like pride and selfishness and gossip and things like that. Sins that we do every day and we do them so often that we don't even realize we are sinning. It is a good book. I really like my small group and hope that I become great friends with the girls.
This weekend was spent preparing and throwing my sister a graduation party because she graduated from Liberty University in December with a BS in Psychology. We had about 20 people over and I cooked most of the food for it. Some of the items included beef brisket, buffalo wings, bar b que, potato salad, muddy buddies, little football shaped chocolates, etc. It was a lot of food, but most of it got eaten thank goodness. Yesterday, my mom sister and I went out to lunch with my aunt and her kids at TGIFridays. After that I went with my aunt and cousins shopping at the mall and some other places. After that I was so exhausted and in so much pain I spent most of the rest of my day in bed. Today I went to school, went to the chiropractor, and found out I got approved for disability. I am making about 1/2 of what I made teaching but considering I had no income for the past 4 months I am so, so, so thankful that I will have income again. I told mom I could make like 200 dollars and it would be worth it. I am making more than that and I don't have many bills anymore besides my health insurance so I am way excited. I was just thinking about declaring bankruptcy because of my medical bills and what not, but I hopefully will not have to now. I am so so excited that I can take some burden off my family financially now.
Anyways, I am exhausted and in pain and have to go to school tomorrow so I think I am going to sign off now. I will try to be a better blogger, but no promises since I'm in school now.
Have a good night guys :)
Friday, January 6, 2012
I am not my disease
So I guess I should do an update and post some new year's resolutions or something like that...
This week has been crap in terms of pain wise. It is probably the weather, but my joints and muscles hurt so bad it takes great effort to get out of bed everyday and most of the day I can't get out of bed. I only really move if I have to. It was super cold this weekend (I'm talking real feel temperatures of negative 3 degrees) and it just killed all the good muscle gaining process I've made. In particular my ankles, toes, knees, wrists and the middle joint in most of my fingers have been hurting especially bad. Yesterday, I got up in the middle of the night/morning to go to the bathroom and literally collapsed to the floor because my ankles were in so much pain they couldn't hold up my body weight. I don't weigh that much, but it was enough to send me to the ground literally. I used mom's cane most of the day yesterday to do the things I needed to do, until the afternoon when everything started working itself out more. I always feel better in the afternoon, unfortunately for me all my classes are in the morning...so that might be an issue. My labs are in the afternoon though, and those are going to be the most intense demand of my energy and body control. As long as I can get to school I can sit there, it will hurt but I can do it, maybe. The labs are what I'm scared about. I remember when I was at Catawba in chem labs I would shake so bad I couldn't get accurate measurements for my beakers and weights of chemicals and what not and now I am tremoring much worse and have much less muscle control so I'm nervous I'll fail my chem and bio labs just because of my physical limitations...but I hope the professors are better/nicer than that.
Anyways, in other health news, and I don't want to jinx it but...my colitis has been in remission for almost a month now. It will be a month next week. I am so freaking excited. I haven't been in remission completely for almost 2 years now. Knock on wood, I haven't had to plan my life around what if there is a bathroom, or am I going to be anemic and need a transfusion this week from the bleeding, or waking up 5 or 6 times a night (though I still usually wake up once but I think it is out of habit and being used to not sleeping because I don't go to the bathroom I just wake up), or being in intense pain in my abdomen. I've still had a couple of "episodes" but nothing like what I was doing and it is usually when I'm stupid and eat foods that I know are not digested well and a lot of them at one time (like a large popcorn at the movie theater) or something like that. Otherwise, I have been colitis flare up free and it feels amazing! I am so happy the new medication is working and now all we have to worry about is this other stupid illness whatever it is. I see the rheumatologist 3 weeks from today and I absolutely cannot wait. I've been keeping a journal for a couple weeks now of every symptom I have and what time I have it so that they can have a good baseline of data. I'm also trying to get all my test results and records from all my different doctors so we don't have to start completely over. Believe it or not, I'm getting a little tired of paying for and doing every test over and over again. So hopefully, in 3 weeks we will be on a diagnosis/treatment journey for whatever this is and maybe my whole body can be in remission and I can be 'healthy' again :)
K, time for some new year's resolutions...
1) Get out of bed everyday, even if I just make it to the couch or table for a meal, get out of bed everyday.
2)Go to school every day I possibly can, do not use my disease as a crutch to skip class and do whatever. This is an opportunity I wanted, don't waste it.
3) New recipe every week...something good to not just like chicken and rice, but more like blue cheese pork roasted salad or something crazy like that.
4) Go to church every week in some capactity
5) Meet 1 new person a month and really get to know them. I'm not talking hey, my name is megan, I'm talking get to know them...I'm lonely here maybe that will be a good way to form friendships. It will probably also be easier since I am getting more involved with my church and school and stuff.
6) See Christine
7) Save money to make this a reality (which will be hard since I don't really make money...but we'll figure that out)
8)Start a celiac support group here...I really miss that thing...
9)Be able to run or walk in a 5k by the end of the summer...I realize this will probably be walk and that makes me sad...but right now walking 50 feet without being out of breath is an ambitious goal and that is sad for a runner...this will also require being correctly diagnosed and treated for whatever I have right now
10)Follow dr's orders...take my medicine every day, rest, do what I'm supposed to so I can get better one day
and last but not least, I want to let my relationship with Christ identify me, not my disease. I have been getting very down lately and it has made me an irritable, cranky, mean person and even though in my head and heart and whatever I know I am not the only one in the world that is this sick I've been feeling like it lately and it is bringing me down. But I need to not let that happen, I need to keep my focus on God and try to stay in a good mood and positive, even when I'm laying on the floor, flat on my face because I passed out or my muscles quit working or whatever. When I'm up at 4 in the morning so tired I want to sleep, but can't because my body doesn't want to sleep. When I'm hungry and can't find one restaurant open that has food I can eat and there is no food in the house I can eat and I don't want to go to the store. When I am so tired I can't stay awake, but have to go to class or the doctor or some other important errand. I need to be happy and positive...because if I'm not happy and positive then the disease wins...and I don't know if you know this or not, but I've read the Bible and the only thing that wins in the end is Jesus...not a disease, not a bill, not a doctor...Jesus...He wins, and we win by having faith in Him. So I am not my disease, I am a daughter of Christ and because of this, one day I will win the battle and it will feel oh so good...and that is my new year's resolution :)
This week has been crap in terms of pain wise. It is probably the weather, but my joints and muscles hurt so bad it takes great effort to get out of bed everyday and most of the day I can't get out of bed. I only really move if I have to. It was super cold this weekend (I'm talking real feel temperatures of negative 3 degrees) and it just killed all the good muscle gaining process I've made. In particular my ankles, toes, knees, wrists and the middle joint in most of my fingers have been hurting especially bad. Yesterday, I got up in the middle of the night/morning to go to the bathroom and literally collapsed to the floor because my ankles were in so much pain they couldn't hold up my body weight. I don't weigh that much, but it was enough to send me to the ground literally. I used mom's cane most of the day yesterday to do the things I needed to do, until the afternoon when everything started working itself out more. I always feel better in the afternoon, unfortunately for me all my classes are in the morning...so that might be an issue. My labs are in the afternoon though, and those are going to be the most intense demand of my energy and body control. As long as I can get to school I can sit there, it will hurt but I can do it, maybe. The labs are what I'm scared about. I remember when I was at Catawba in chem labs I would shake so bad I couldn't get accurate measurements for my beakers and weights of chemicals and what not and now I am tremoring much worse and have much less muscle control so I'm nervous I'll fail my chem and bio labs just because of my physical limitations...but I hope the professors are better/nicer than that.
Anyways, in other health news, and I don't want to jinx it but...my colitis has been in remission for almost a month now. It will be a month next week. I am so freaking excited. I haven't been in remission completely for almost 2 years now. Knock on wood, I haven't had to plan my life around what if there is a bathroom, or am I going to be anemic and need a transfusion this week from the bleeding, or waking up 5 or 6 times a night (though I still usually wake up once but I think it is out of habit and being used to not sleeping because I don't go to the bathroom I just wake up), or being in intense pain in my abdomen. I've still had a couple of "episodes" but nothing like what I was doing and it is usually when I'm stupid and eat foods that I know are not digested well and a lot of them at one time (like a large popcorn at the movie theater) or something like that. Otherwise, I have been colitis flare up free and it feels amazing! I am so happy the new medication is working and now all we have to worry about is this other stupid illness whatever it is. I see the rheumatologist 3 weeks from today and I absolutely cannot wait. I've been keeping a journal for a couple weeks now of every symptom I have and what time I have it so that they can have a good baseline of data. I'm also trying to get all my test results and records from all my different doctors so we don't have to start completely over. Believe it or not, I'm getting a little tired of paying for and doing every test over and over again. So hopefully, in 3 weeks we will be on a diagnosis/treatment journey for whatever this is and maybe my whole body can be in remission and I can be 'healthy' again :)
K, time for some new year's resolutions...
1) Get out of bed everyday, even if I just make it to the couch or table for a meal, get out of bed everyday.
2)Go to school every day I possibly can, do not use my disease as a crutch to skip class and do whatever. This is an opportunity I wanted, don't waste it.
3) New recipe every week...something good to not just like chicken and rice, but more like blue cheese pork roasted salad or something crazy like that.
4) Go to church every week in some capactity
5) Meet 1 new person a month and really get to know them. I'm not talking hey, my name is megan, I'm talking get to know them...I'm lonely here maybe that will be a good way to form friendships. It will probably also be easier since I am getting more involved with my church and school and stuff.
6) See Christine
7) Save money to make this a reality (which will be hard since I don't really make money...but we'll figure that out)
8)Start a celiac support group here...I really miss that thing...
9)Be able to run or walk in a 5k by the end of the summer...I realize this will probably be walk and that makes me sad...but right now walking 50 feet without being out of breath is an ambitious goal and that is sad for a runner...this will also require being correctly diagnosed and treated for whatever I have right now
10)Follow dr's orders...take my medicine every day, rest, do what I'm supposed to so I can get better one day
and last but not least, I want to let my relationship with Christ identify me, not my disease. I have been getting very down lately and it has made me an irritable, cranky, mean person and even though in my head and heart and whatever I know I am not the only one in the world that is this sick I've been feeling like it lately and it is bringing me down. But I need to not let that happen, I need to keep my focus on God and try to stay in a good mood and positive, even when I'm laying on the floor, flat on my face because I passed out or my muscles quit working or whatever. When I'm up at 4 in the morning so tired I want to sleep, but can't because my body doesn't want to sleep. When I'm hungry and can't find one restaurant open that has food I can eat and there is no food in the house I can eat and I don't want to go to the store. When I am so tired I can't stay awake, but have to go to class or the doctor or some other important errand. I need to be happy and positive...because if I'm not happy and positive then the disease wins...and I don't know if you know this or not, but I've read the Bible and the only thing that wins in the end is Jesus...not a disease, not a bill, not a doctor...Jesus...He wins, and we win by having faith in Him. So I am not my disease, I am a daughter of Christ and because of this, one day I will win the battle and it will feel oh so good...and that is my new year's resolution :)
Wednesday, January 4, 2012
Frustration
For the past couple of days I have been extremely, more than usual frustrated with my illness. For the first time really I have become very frustrated (to the point of hysterical breakdown) with the fact that I can't eat anything I want to. I think it is because I know live with my mom and sis so there is tons of gluten in the house. When I lived on my own it wasn't as big an issue because I just didn't buy glutenous foods...now it's everywhere, but that isn't there fault and it's not fair for me to expect them to not have it in the house...it's just bothering me this week for some reason. Also, I have been extremely irritable and taking it out on my family and that makes me sad inside. The pain is getting worse because of the extreme coldness here (night before last the real feel was negative 3 degrees here, in the days the high has been about 24 with a real feel of 17 or so). Right now I am up because my joints, all of them, are on fire, so much so that I am literally sweating because I hurt so bad. So I decided to google quotes about invisible illnesses to try to inspire and motivate me that it will all be ok and found this neato little survey, so I filled it out so that you guys can learn my innermost thoughts about my illness...and I have more thoughts but these are the most of them. I should also point out that I took 2 pain pills tonight because I hurt so bad and I usually don't even take tylenol so I apologize if there is anything offensive and/or non coherent in it. so here you go, enjoy. :)
29 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Celiac/Ulcerative Colitis/and possibly Dysautonomia or Fibromyalgia or some other nervous system disorder
2. I was diagnosed with it in the year: 2009 and will be 2012 for whatever the nervous system thing i have is
3. But I had symptoms since: I was a junior in high school
4. The biggest adjustment I’ve had to make is: learning that on days I have can't get out of bed that is ok, eating only gluten free food, not being able to be as independent, always planning my life around where the nearest bathroom is
5. Most people assume: I am healthy because, I “don’t look sick” and that I am exaggerating my symptoms there is no way I could be this sick all the time.
6. The hardest part about mornings are: getting out of bed, my joints are in so much pain all the time it is very hard to get moving, especially in the cold. I also can no longer take a shower standing up because it takes to much energy and I will pass out so I use a shower stool to sit on to take showers. Yes, I’m 26 and I have to use a shower stool.
7. My favorite medical TV show is: I love most of them, I especially like Grey’s Anatomy, I also love to watch Discovery Health Channel and watch all the mystery diagnosis shows hoping I will see myself on there one day and know what I have finally!
8. A gadget I couldn’t live without is: my back massager/heater for my chair, a heating pad, and my cell phone/laptop so I can stay connected on my bad days!
9. The hardest part about nights are: sleeping-either can’t sleep because I’m in too much pain or can’t stay awake. I also get really achey muscles starting around 8 at night and it makes me very irritable. I also get very bad night sweats and wake up in a pool of sweat several times a night and in the mornings I can usually literally wring my clothes out, especially in the summer. I also have to frequently go to the bathroom multiple times in the middle of the night (although that has diminished a lot:) )
10. Each day I take 14 pills & vitamins. Plus, I get IV infusions every 8 weeks of another medication. But I thank God, it is only 14 pills a day, because I used to take 24 pills a day.
11. Regarding alternative treatments I: love them, I could not live without chiropractic adjustments and massage. I also used to get acupuncture in Salisbury and that helped a lot too, but haven’t found that up here in Indiana yet. I am willing to try anything that is not a pill or something not natural because I am not a medication lover.
12. If I had to choose between an invisible illness or visible I would choose: visible-people would judge me less I think…but if it was visible then people would judge based on looks, I don’t think there is a good answer to this question.
13. Regarding working and career: I loved my job as a severe and profound teacher. It did not love me. I am no longer allowed to work and am in the process of applying for disability. The people who abuse the system though have made it very hard for people who actually need it to get it, so we’ll see. I am going to try to become a dietitian and see if I can do that eventually.
14. People would be surprised to know: I, no matter how much I complain on facebook, or to my mom, or friends, and no matter how much I hurt and how many times I go to the hospital and take pills and whatever else am very happy that I have my diseases and know what they are. The way I see it, God knows what He’s doing and He is trusting me with these diseases. He is trusting me to have these diseases and take care of the body He entrusted me with to try and take care of it as long as I can. I know that I have these illnesses for a reason and I hope that I am fulfilling my ‘purpose’ of having them every day.
15. The hardest thing to accept about my new reality has been: I will not ever be all the way better, I will never be able to do as much as people my age (or even way older can do). I have to slow down and take it easy, which sometimes means not even doing anything that day at all.
16. Something I never thought I could do with my illness that I did was: go back to school (well I haven’t done it yet, but I start next week)
17. The commercials about my illness: make me laugh…and make me feel sad that there are enough people that have my illnesses that there have to be commercials because I wouldn’t wish this crap on my worst enemy.
18. Something I really miss doing since I was diagnosed is: eating out with friends anywhere I want to, being able to be spontaneous and have energy to have fun.
19. It was really hard to have to give up: my job, running
20. A new hobby I have taken up since my diagnosis is: couponing, cooking, reading, arts and crafts
21. If I could have one day of feeling normal again I would: run a marathon, take a hike, eat anything I wanted, and just be spontaneous
22. My illness has taught me: that everyone has stuff, and that some people have harder stuff, but without stuff we don’t know what we are capable of despite bad circumstances
23. Want to know a secret? One thing people say that gets under my skin is: You look so good today—of course I look good, you can’t see my disease, the days I “look good” are usually the days I feel the worst. If I take the time to put on make up and get dressed and try to look cute it’s to cover up the fact that I can barely move and feel horrible because I sometimes think that if I look good then that helps me feel better…or something like that.
24. But I love it when people: talk to me about something other than my illness. I am not my illness. I have real life interests and hobbies and passion about real life things besides my illness. If I want to vent about it please listen and don’t tell me I complain too much, but unless I bring it up please don’t talk to me about it. I am Megan not that girl who is sick.
25. My favorite motto, scripture, quote that gets me through tough times is: I have a couple: “Take pride in how far you have come and have faith in how far you can go” “always remember you are braver than you believe, stronger than you seem and smarter than you think”, “I will never leave you or forsake you”, “You make beautiful things out of us”, “it is well with my soul”, galatians 2:20 and there are tons more scriptures but that is good enough for you to get an idea.
26. When someone is diagnosed I’d like to tell them: be positive, if you aren’t positive, you won’t be able to get out of bed that day. Your physical body has a lot to do with your mental body, you have to be positive.
27. Something that has surprised me about living with an illness is: how judgemental people are and how judgemental I was before being ill. How much people take for granted in their extremely blessed lives.
28. The nicest thing someone did for me when I wasn’t feeling well was: all the people that have visited me in the hospital, cooked for me. One story that sticks out though is an older gentleman that lived across the hall from me in my apartment building that would carry my groceries upstairs for me almost every time he saw me unloading them and after the I almost died hospital visit before my mom could come down brought me a half gallon of milk every day because he knew I couldn’t drive and loved and was craving milk and wanted to check on me and make sure I was ok.
29. The fact that you read this list makes me feel: like you probably know way to much about me right now, but I hope you can understand better what I’m going through and what many others are going through worse than me so that you can educate people about invisible illnesses. I know none of my friends would be judgmental, but there are tons of people that are so maybe YOU can help advocate for us. And maybe you have an invisible illness too (tons of my friends do)…maybe you should fill this in even if just for your eyes. It was kind of cathartic! :)
29 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Celiac/Ulcerative Colitis/and possibly Dysautonomia or Fibromyalgia or some other nervous system disorder
2. I was diagnosed with it in the year: 2009 and will be 2012 for whatever the nervous system thing i have is
3. But I had symptoms since: I was a junior in high school
4. The biggest adjustment I’ve had to make is: learning that on days I have can't get out of bed that is ok, eating only gluten free food, not being able to be as independent, always planning my life around where the nearest bathroom is
5. Most people assume: I am healthy because, I “don’t look sick” and that I am exaggerating my symptoms there is no way I could be this sick all the time.
6. The hardest part about mornings are: getting out of bed, my joints are in so much pain all the time it is very hard to get moving, especially in the cold. I also can no longer take a shower standing up because it takes to much energy and I will pass out so I use a shower stool to sit on to take showers. Yes, I’m 26 and I have to use a shower stool.
7. My favorite medical TV show is: I love most of them, I especially like Grey’s Anatomy, I also love to watch Discovery Health Channel and watch all the mystery diagnosis shows hoping I will see myself on there one day and know what I have finally!
8. A gadget I couldn’t live without is: my back massager/heater for my chair, a heating pad, and my cell phone/laptop so I can stay connected on my bad days!
9. The hardest part about nights are: sleeping-either can’t sleep because I’m in too much pain or can’t stay awake. I also get really achey muscles starting around 8 at night and it makes me very irritable. I also get very bad night sweats and wake up in a pool of sweat several times a night and in the mornings I can usually literally wring my clothes out, especially in the summer. I also have to frequently go to the bathroom multiple times in the middle of the night (although that has diminished a lot:) )
10. Each day I take 14 pills & vitamins. Plus, I get IV infusions every 8 weeks of another medication. But I thank God, it is only 14 pills a day, because I used to take 24 pills a day.
11. Regarding alternative treatments I: love them, I could not live without chiropractic adjustments and massage. I also used to get acupuncture in Salisbury and that helped a lot too, but haven’t found that up here in Indiana yet. I am willing to try anything that is not a pill or something not natural because I am not a medication lover.
12. If I had to choose between an invisible illness or visible I would choose: visible-people would judge me less I think…but if it was visible then people would judge based on looks, I don’t think there is a good answer to this question.
13. Regarding working and career: I loved my job as a severe and profound teacher. It did not love me. I am no longer allowed to work and am in the process of applying for disability. The people who abuse the system though have made it very hard for people who actually need it to get it, so we’ll see. I am going to try to become a dietitian and see if I can do that eventually.
14. People would be surprised to know: I, no matter how much I complain on facebook, or to my mom, or friends, and no matter how much I hurt and how many times I go to the hospital and take pills and whatever else am very happy that I have my diseases and know what they are. The way I see it, God knows what He’s doing and He is trusting me with these diseases. He is trusting me to have these diseases and take care of the body He entrusted me with to try and take care of it as long as I can. I know that I have these illnesses for a reason and I hope that I am fulfilling my ‘purpose’ of having them every day.
15. The hardest thing to accept about my new reality has been: I will not ever be all the way better, I will never be able to do as much as people my age (or even way older can do). I have to slow down and take it easy, which sometimes means not even doing anything that day at all.
16. Something I never thought I could do with my illness that I did was: go back to school (well I haven’t done it yet, but I start next week)
17. The commercials about my illness: make me laugh…and make me feel sad that there are enough people that have my illnesses that there have to be commercials because I wouldn’t wish this crap on my worst enemy.
18. Something I really miss doing since I was diagnosed is: eating out with friends anywhere I want to, being able to be spontaneous and have energy to have fun.
19. It was really hard to have to give up: my job, running
20. A new hobby I have taken up since my diagnosis is: couponing, cooking, reading, arts and crafts
21. If I could have one day of feeling normal again I would: run a marathon, take a hike, eat anything I wanted, and just be spontaneous
22. My illness has taught me: that everyone has stuff, and that some people have harder stuff, but without stuff we don’t know what we are capable of despite bad circumstances
23. Want to know a secret? One thing people say that gets under my skin is: You look so good today—of course I look good, you can’t see my disease, the days I “look good” are usually the days I feel the worst. If I take the time to put on make up and get dressed and try to look cute it’s to cover up the fact that I can barely move and feel horrible because I sometimes think that if I look good then that helps me feel better…or something like that.
24. But I love it when people: talk to me about something other than my illness. I am not my illness. I have real life interests and hobbies and passion about real life things besides my illness. If I want to vent about it please listen and don’t tell me I complain too much, but unless I bring it up please don’t talk to me about it. I am Megan not that girl who is sick.
25. My favorite motto, scripture, quote that gets me through tough times is: I have a couple: “Take pride in how far you have come and have faith in how far you can go” “always remember you are braver than you believe, stronger than you seem and smarter than you think”, “I will never leave you or forsake you”, “You make beautiful things out of us”, “it is well with my soul”, galatians 2:20 and there are tons more scriptures but that is good enough for you to get an idea.
26. When someone is diagnosed I’d like to tell them: be positive, if you aren’t positive, you won’t be able to get out of bed that day. Your physical body has a lot to do with your mental body, you have to be positive.
27. Something that has surprised me about living with an illness is: how judgemental people are and how judgemental I was before being ill. How much people take for granted in their extremely blessed lives.
28. The nicest thing someone did for me when I wasn’t feeling well was: all the people that have visited me in the hospital, cooked for me. One story that sticks out though is an older gentleman that lived across the hall from me in my apartment building that would carry my groceries upstairs for me almost every time he saw me unloading them and after the I almost died hospital visit before my mom could come down brought me a half gallon of milk every day because he knew I couldn’t drive and loved and was craving milk and wanted to check on me and make sure I was ok.
29. The fact that you read this list makes me feel: like you probably know way to much about me right now, but I hope you can understand better what I’m going through and what many others are going through worse than me so that you can educate people about invisible illnesses. I know none of my friends would be judgmental, but there are tons of people that are so maybe YOU can help advocate for us. And maybe you have an invisible illness too (tons of my friends do)…maybe you should fill this in even if just for your eyes. It was kind of cathartic! :)
Sunday, January 1, 2012
Living with passion :)
It is a new year, I wanted to write a sappy new year's blog about what I've been through and lessons learned...but you can look forward to that later this week...because I've been reading a very intense, emotional book for the past 2 days called Sing You Home by Jodi Picoult and it has me ruined of any creativity and thought. Plus, that blog I want to write will take some time and effort and I'm tired. Plus, I'm a little obsessed with Dr. Seuss if you don't know that already and I saw this poster on Pinterest and I really think that it is how everyone should live there life every day and thought it would be great for the new year, so I'm reposting it here for all my blog friends to read and for me to remember so I can strive to live my life by it. I am also going to attempt to make a poster of it before I start back to school next monday...crazy, that is so soon!!! :) So enjoy and be inspired :) Love y'all :)
DISCLAIMER:THE REST OF THIS BLOG IS 100% COMPLETELY STOLEN FROM A POSTER I SAW ON PINTEREST :)
Living with Passion: Top 10 Dr. Seuss Quotes on Life (**Editors note (i.e. Me, meggers) P.S. #4 is usually attributed to Seuss but it also sometimes listed as anonymous so this could be 9 Dr. Seuss Quotes on life and 1 good quote ;)
1. "Today you are You, that is truer than true. There is no one alive who is Youer than You."
Don't forget the special gift of just being you. Don't get distracted trying to be like something or someone else you're not. You are the best You there could ever be.
2. "If you never did you should. These things are fun and fun is good."
Life was not given to us to be filled with regrets. Opportunities await and you can be more fun than you ever imagined if you'll simply take the chance. Take advantage of those opportunities and have a blast. What good can possibly come from saying you never tried?
3. "Be who you are and say what you feel because those who mind don't matter and those who matter don't mind."
Often folks are so worried about what other people think. Be honest and real and those who matter most in your life will accept you no matter what. Those who won't, you don't need. Life is too short to worry all the time what other people think.
4. "Don't cry because it's over. Smile because it happened."
This is our opportunity to see the glass as half full. Celebrate people and experiences that you've had and let the memories live on. So often we get trapped in grief and despair when there is so much to be celebrated.
5. "Sometimes the questions are complicated and the answers are simple."
Aren't we typically our own worst enemy. We make things more complicated than they have to be. When in doubt, go back to the basics and you'll probably find your answer.
6. "I meant what I said and I said what I meant."
Mean what you say or don't say it at all. Resist the urge to not be genuine in an effort to protect or please yourself or someone else. This does not mean be rude or hateful, in those times it's probably best to not say something. However, when you do speak up, make sure it is what you what to say and what you really mean it's your opportunity to live with integrity.
7. "The more that you read, the more things you will know. The more that you learn, the more places you'll go."
Always make learning a part of your life. You know only a portion of what you could possibly know and there are so many more exciting adventures to come from learning new things. Learning keeps you connected and interested which is a key to living passionately.
8. "How did it get so late so soon? It's night before it's afternoon. December is here before it's June. My goodness how the time has flewn. How did it get so late so soon?"
Time flies by. We all know this for a fact. Don't let it sneak past you without being part of it. Time is the most valuable of all the resources as it's the only one we can never get back.
9. "Today was good. Today was fun. Tomorrow is another one."
Be grateful for the good parts of your day. Recognize what was fun and be thinking of what you can do to make your tomorrow even better.
10. "Think left and think right and think low and think high. Oh, the thinks you can think if you only try."
Trying is a key element to success. Without trying success isn't even a possibility. Without trying you can't complain about what you don't or can't have.
Dream big. Think big and Act big.
It will make all the difference in your life. No limitations.
***End of poster***
Isn't that a nice little inspirational poster with some good advice for you to start out your new year and live your life. Have a great 2012 everyone :)
DISCLAIMER:THE REST OF THIS BLOG IS 100% COMPLETELY STOLEN FROM A POSTER I SAW ON PINTEREST :)
Living with Passion: Top 10 Dr. Seuss Quotes on Life (**Editors note (i.e. Me, meggers) P.S. #4 is usually attributed to Seuss but it also sometimes listed as anonymous so this could be 9 Dr. Seuss Quotes on life and 1 good quote ;)
1. "Today you are You, that is truer than true. There is no one alive who is Youer than You."
Don't forget the special gift of just being you. Don't get distracted trying to be like something or someone else you're not. You are the best You there could ever be.
2. "If you never did you should. These things are fun and fun is good."
Life was not given to us to be filled with regrets. Opportunities await and you can be more fun than you ever imagined if you'll simply take the chance. Take advantage of those opportunities and have a blast. What good can possibly come from saying you never tried?
3. "Be who you are and say what you feel because those who mind don't matter and those who matter don't mind."
Often folks are so worried about what other people think. Be honest and real and those who matter most in your life will accept you no matter what. Those who won't, you don't need. Life is too short to worry all the time what other people think.
4. "Don't cry because it's over. Smile because it happened."
This is our opportunity to see the glass as half full. Celebrate people and experiences that you've had and let the memories live on. So often we get trapped in grief and despair when there is so much to be celebrated.
5. "Sometimes the questions are complicated and the answers are simple."
Aren't we typically our own worst enemy. We make things more complicated than they have to be. When in doubt, go back to the basics and you'll probably find your answer.
6. "I meant what I said and I said what I meant."
Mean what you say or don't say it at all. Resist the urge to not be genuine in an effort to protect or please yourself or someone else. This does not mean be rude or hateful, in those times it's probably best to not say something. However, when you do speak up, make sure it is what you what to say and what you really mean it's your opportunity to live with integrity.
7. "The more that you read, the more things you will know. The more that you learn, the more places you'll go."
Always make learning a part of your life. You know only a portion of what you could possibly know and there are so many more exciting adventures to come from learning new things. Learning keeps you connected and interested which is a key to living passionately.
8. "How did it get so late so soon? It's night before it's afternoon. December is here before it's June. My goodness how the time has flewn. How did it get so late so soon?"
Time flies by. We all know this for a fact. Don't let it sneak past you without being part of it. Time is the most valuable of all the resources as it's the only one we can never get back.
9. "Today was good. Today was fun. Tomorrow is another one."
Be grateful for the good parts of your day. Recognize what was fun and be thinking of what you can do to make your tomorrow even better.
10. "Think left and think right and think low and think high. Oh, the thinks you can think if you only try."
Trying is a key element to success. Without trying success isn't even a possibility. Without trying you can't complain about what you don't or can't have.
Dream big. Think big and Act big.
It will make all the difference in your life. No limitations.
***End of poster***
Isn't that a nice little inspirational poster with some good advice for you to start out your new year and live your life. Have a great 2012 everyone :)
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