Wednesday, March 30, 2011
Keeping Up...
I have so much to do today and I am sitting on the computer. All I want is loads of coffee and cadbury eggs (the little ones with the candy shell) 2 things that aren't a good idea with colitis. I am trying really hard to change my eating habits since that can play a huge role in how you feel from day to day. My best friend Shannon is helping me with this...she asks questions like do you really need that? and we try to evaluate what is good and bad for UC since the internet lists of good/bad food is pretty confusing at times. One site says low carbs, low fiber, no raw veggies. Other say get more fiber, high protein, eat healthy veggies and fruits...I know for sure my gastroenterologist wants me to cut out dairy, only having yogurt with pro-biotics. No gum (bad fake sugars), no carbonation, no caffeine. When I saw him last week and I was really sick, he said a liquid diet...I tried but eventually I did get some of my appetite so I had some solid food. Keeping up with little ones when I don't feel like eating and I am cutting back to extremes with my caffeine intake is sooooooo hard. UC can make you tired all day but caffeine can make it so much worse if you are having a flare-up...I assume the stimulants cause more cramping....All I want is a day to get all my chores done and be able to PLAY with the girls too. Without feeling so run-down that I have to take braks just to stop the spinning in my head or catch my breath. I don't have a good a feeling about ever going beyond what I had intended to do in day...just wanting to Keep UP!!!
Where should I begin??? This may be a little messy ;)
Messy...story of my life for the present time. I am working on controlling the chaos into routine to secure some sanity. I am truly living minute to minute most days. Although I have so many things that I know are going to take time and patience to achieve, I have to try to stay calm and remind myself that things won't be perfect any time soon (well ever!) and be okay with the "here and now." I have a hard time with even the "here and nows" unfortunately. I will try and explain some basics about my life to get this first post started...Hmmm, where should I begin...
First and foremost, I am a "new believer" I think is what some would call it. I've always believed in God and have known for a while that I craved for a closer relationship with Him. It wasn't until recently that I made a decision that I want to be baptized and completely except God into my life. I want to be a better person. Read His word and praise him for all that He has done for me. I am learning to "wait" in his light because not all things are going to play out the way we want. So much of my life right now is a struggle wrapped in sadness and exhaustion. But I have learned that He does have a plan for me and my family. I just need help with the patience for waiting for all His blessings to become apparent. Some days are bursting with His compassion and love for me and others are a little too dark for me to see His light. But I have faith that it is there and if I can close my eyes and pray I will be given a new sense of the strength that I long for each day.
Second, I am a mother to 2 beautiful little girls. Whit is almost 4 and Madi is 2. They make my days a challenge to get through with my sanity still there but they provide the most unconditional love (most of the time!) that makes me so proud and grateful that eventhough it has not been easy with 2 little ones and all that I have going on, they just prove how worth all of this they are. They don't even have to try and they show me why I am alive and what/who I want to be a better person for.
Thirdly, I have an auto-immune disease called Ulcerative Colitis (UC is much easier to type!) Since September of 2009, this has run my life. It is a daily battle for me to cope with. I haven't even had it for very long and it has changed me in ways and areas of my life that I had no idea it would effect. I have my WHOLE life to deal with this issue and I guess that is what hurts and terrifies me the most.
Most of my blogs will most likely be about my UC and how it is annoying me! Some will have alot to do with the daily girnd of being a mom. So, I have no idea who will even be interested in following this blog but I needed a place to vent my frustration and possibly find some other people who struggle on a minute-to-minute basis like I do...
OKAY, today is March 29th. I recieved 2 liters of IV fluids in order to try and re-hydrate so I can hopefully receive a Remicade Infusion (an immune-suppressing drug, hence "SUPPRESSED" Melissa) by the end of the week. I am about 5 weeks late on an infusion after I moved across the country. After a long, stressful trip and an added cold/flu virus to go along, I fully kicked myself into a flare-up. BOOOO! Like I don't have enough to deal with right now. Since being diagnosed in 2009, this has been by far the worst flare-up I have had. It has been the most painful and longest to date. Not only is having a "cold" difficult when you are a parent but this particular "cold" was like the flu and mono all wrapped up into one. For over 2 weeks I have dealt with fevers, sore throat, horrible bady aches making my neck stiff, and ear aches. My glands are so swollen they throb and I feel like I had been hit by a semi. So, what you wonder could be expected when my body and mind are on the brink of a breakdown...yup, a flare-up. Oh great...this has made everyday for weeks some of the hardest moments to get though without losing it and crying until I feel asleep. I can't think straight most of the time because my head is so stuffy and I am so weak from constantly going to the bathroom. I don't even have anything to give most of the time when I sit in the bathroom, I just have to try in order to relieve some of the agony of stomach cramping. (Some of my blog may not be the best thing to read while eating, or for that matter if potty-talk grosses you out then a blog by someone with UC is not going to be your ideal reading material...just a warning!) Anyways, I know I am rambling, I'm exhausted. My symptoms along with this sickness from H-E-double L include stomach pain (sharp and cramping), fatigue, nausea, frequent bathroom emergencies, horrible sciatica ( which apparently is something that is common in patients with UC to have due to all the inflammation in the intestines and bowel), and over all aching in my muscles from all the tension. I have had about 4 to 5 days that were honestly so bad that if I didn't already know what was wrong with me, I'd totally go to the hospital. Been there did that and stayed for a week. I am sure that I am driving my doctors nuts with requests for anti-biotics and pain medication. Sometimes and I really don't mean it deep down because I don't wish UC on anyone, but I wish at least the doctors really understood how much it hurts and how much it drains you of any energy you have left. It makes me seriously delirious at times. I want to break down, cry, scream, and sleep until its all over. All these things I can not do because I have 2 precious little girls that don't deserve anything less than a supermom...I just can't physically or mentally do it when I feel so awful. But I try and try to pray for strength just to make it through the day I am living in so that they can look back on this time and not remember anything but that mommy was so happy to be with her girls and that they had so much fun in this challenging time that we are going through. I say "we" because it completely effects their lives and anyone who is close to me. I try not to be impatient or look so depressed all the time. It seriously is so draining that I feel exhausted at the end of the day but I know that the night will only be stressful because I am only usually able to get maybe 2 solid hours of sleeping. The rest of the night I toss and turn because my back is killing me and my anxiety about the next time the girls will wake up and I will feel too exhausted to get them, That never happens though because when I am at least able to get them happy and cozy, I feel a little better that at least they will sleep well. The pain I feel all over my body is terrible. My back is what bothers me the most. Alot of the stomach pain causes me to double over for a moment and that hurts my back too. But my back ACHES constantly and not just a little ache. An ache that feels like my sciatic pain is actually a hot dagger in my back shooting across and down into my right to left buttcheeks and hip sockets. I more than anything want to the back pain to at least ease up. It makes even small things like getting my girls out of their car seats or changing out a load of laundry make me want to cry...something I try to not do these days ever, especially in front of my girls.
Alright, that seems like quite a bit of complaining now doesn't it!?!?! But I gave a warning. I really needed to vent tonight. Obviously because I started a blog to do just that. I am suppost to be making a list of all the things I need to get done tomorrow because God willing I will feel even a little bit better tomorrow and I can get some of the tasks done that I havne't had the mental ability or energy to accomplish in over 2 weeks. I pray that I can be positive, motivated, and have a little extra energy to kick start a great new day for the me and my girls. I have soooo much cleaning to do and phone calls to make. And we had to postpone my 2 year olds birthday party to this weekend...I have some decorations to finish! Wish me luck and say a little prayer for us girls if that is your thing too ;)
Good night...I have fallen asleep a couple times just typing maybe I'll be so sleepy I can get an extra hour of solid sleep with all of this out of my head...
First and foremost, I am a "new believer" I think is what some would call it. I've always believed in God and have known for a while that I craved for a closer relationship with Him. It wasn't until recently that I made a decision that I want to be baptized and completely except God into my life. I want to be a better person. Read His word and praise him for all that He has done for me. I am learning to "wait" in his light because not all things are going to play out the way we want. So much of my life right now is a struggle wrapped in sadness and exhaustion. But I have learned that He does have a plan for me and my family. I just need help with the patience for waiting for all His blessings to become apparent. Some days are bursting with His compassion and love for me and others are a little too dark for me to see His light. But I have faith that it is there and if I can close my eyes and pray I will be given a new sense of the strength that I long for each day.
Second, I am a mother to 2 beautiful little girls. Whit is almost 4 and Madi is 2. They make my days a challenge to get through with my sanity still there but they provide the most unconditional love (most of the time!) that makes me so proud and grateful that eventhough it has not been easy with 2 little ones and all that I have going on, they just prove how worth all of this they are. They don't even have to try and they show me why I am alive and what/who I want to be a better person for.
Thirdly, I have an auto-immune disease called Ulcerative Colitis (UC is much easier to type!) Since September of 2009, this has run my life. It is a daily battle for me to cope with. I haven't even had it for very long and it has changed me in ways and areas of my life that I had no idea it would effect. I have my WHOLE life to deal with this issue and I guess that is what hurts and terrifies me the most.
Most of my blogs will most likely be about my UC and how it is annoying me! Some will have alot to do with the daily girnd of being a mom. So, I have no idea who will even be interested in following this blog but I needed a place to vent my frustration and possibly find some other people who struggle on a minute-to-minute basis like I do...
OKAY, today is March 29th. I recieved 2 liters of IV fluids in order to try and re-hydrate so I can hopefully receive a Remicade Infusion (an immune-suppressing drug, hence "SUPPRESSED" Melissa) by the end of the week. I am about 5 weeks late on an infusion after I moved across the country. After a long, stressful trip and an added cold/flu virus to go along, I fully kicked myself into a flare-up. BOOOO! Like I don't have enough to deal with right now. Since being diagnosed in 2009, this has been by far the worst flare-up I have had. It has been the most painful and longest to date. Not only is having a "cold" difficult when you are a parent but this particular "cold" was like the flu and mono all wrapped up into one. For over 2 weeks I have dealt with fevers, sore throat, horrible bady aches making my neck stiff, and ear aches. My glands are so swollen they throb and I feel like I had been hit by a semi. So, what you wonder could be expected when my body and mind are on the brink of a breakdown...yup, a flare-up. Oh great...this has made everyday for weeks some of the hardest moments to get though without losing it and crying until I feel asleep. I can't think straight most of the time because my head is so stuffy and I am so weak from constantly going to the bathroom. I don't even have anything to give most of the time when I sit in the bathroom, I just have to try in order to relieve some of the agony of stomach cramping. (Some of my blog may not be the best thing to read while eating, or for that matter if potty-talk grosses you out then a blog by someone with UC is not going to be your ideal reading material...just a warning!) Anyways, I know I am rambling, I'm exhausted. My symptoms along with this sickness from H-E-double L include stomach pain (sharp and cramping), fatigue, nausea, frequent bathroom emergencies, horrible sciatica ( which apparently is something that is common in patients with UC to have due to all the inflammation in the intestines and bowel), and over all aching in my muscles from all the tension. I have had about 4 to 5 days that were honestly so bad that if I didn't already know what was wrong with me, I'd totally go to the hospital. Been there did that and stayed for a week. I am sure that I am driving my doctors nuts with requests for anti-biotics and pain medication. Sometimes and I really don't mean it deep down because I don't wish UC on anyone, but I wish at least the doctors really understood how much it hurts and how much it drains you of any energy you have left. It makes me seriously delirious at times. I want to break down, cry, scream, and sleep until its all over. All these things I can not do because I have 2 precious little girls that don't deserve anything less than a supermom...I just can't physically or mentally do it when I feel so awful. But I try and try to pray for strength just to make it through the day I am living in so that they can look back on this time and not remember anything but that mommy was so happy to be with her girls and that they had so much fun in this challenging time that we are going through. I say "we" because it completely effects their lives and anyone who is close to me. I try not to be impatient or look so depressed all the time. It seriously is so draining that I feel exhausted at the end of the day but I know that the night will only be stressful because I am only usually able to get maybe 2 solid hours of sleeping. The rest of the night I toss and turn because my back is killing me and my anxiety about the next time the girls will wake up and I will feel too exhausted to get them, That never happens though because when I am at least able to get them happy and cozy, I feel a little better that at least they will sleep well. The pain I feel all over my body is terrible. My back is what bothers me the most. Alot of the stomach pain causes me to double over for a moment and that hurts my back too. But my back ACHES constantly and not just a little ache. An ache that feels like my sciatic pain is actually a hot dagger in my back shooting across and down into my right to left buttcheeks and hip sockets. I more than anything want to the back pain to at least ease up. It makes even small things like getting my girls out of their car seats or changing out a load of laundry make me want to cry...something I try to not do these days ever, especially in front of my girls.
Alright, that seems like quite a bit of complaining now doesn't it!?!?! But I gave a warning. I really needed to vent tonight. Obviously because I started a blog to do just that. I am suppost to be making a list of all the things I need to get done tomorrow because God willing I will feel even a little bit better tomorrow and I can get some of the tasks done that I havne't had the mental ability or energy to accomplish in over 2 weeks. I pray that I can be positive, motivated, and have a little extra energy to kick start a great new day for the me and my girls. I have soooo much cleaning to do and phone calls to make. And we had to postpone my 2 year olds birthday party to this weekend...I have some decorations to finish! Wish me luck and say a little prayer for us girls if that is your thing too ;)
Good night...I have fallen asleep a couple times just typing maybe I'll be so sleepy I can get an extra hour of solid sleep with all of this out of my head...
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