So, all day today I kept thinking to myself "is it friday YET?" and within seconds...okay, like 30 seconds for me, I realize 1) ha. its like Wednesday...wait (time for thought, count, guess?? No, no it's Thursday. and 2) Why do I care? I have no idea why I kept asking myself this today. I mean, I seriously think I actually manage to be in bed earlier on the weekends. Unless, we go to church on Saturday night. Which yes, that is my big "night-out" for the weekend. It starts at 7, so it's a late night for the girls too. Shannon and I have managed to rent like 2 movies in the last couple weeks and we have to turn it off half-way through because we are sooo tired. I really don't care that I don't have an exciting night life or crazy weekends anymore...but sometimes I wish I had the energy to even hang out with my BFF past 11 or manage to complete things after the girls go to bed. I am DONE at like 8 FOR SURE!
I am already stressing about tomorrow. I have yet again managed to schedule an appointment that is not going to be super convenient during the day. I have to go to SLO for an infusion that will at least be 2 hours for the medicine to run through and then all the prep-time the nurse needs with the IVs and paperwork...and drive time. Not only was Shannon suppose to be helping with a funeral tomorrow but pretty much everyday she has off, she is ON for the little ladies. I don't think I can ever thank her enough. And Aunt Carrie who has the girls a couple times a week and they DESTROY her house! But the girls love all this time they spend away from Mama. They get "special" attention. They are always so happy when I come home which makes me feel good because they wave me goodbye with huge grins because they know they are in for some fun when I leave! Which is a blessing, I know. They are comfortable and happy with their surroundings...but I think most moms still think "Do they miss me at all!???" Ok, that was besides the point of this paragraph...(I believe I mentioned that I am like the ULTIMATE random thinker/lost thoughts/huh???) I am (here goes another list!) dreading my infusion for the following reasons...#1 I have an overwhelming feeling that it is going to wipe me OUT (usually makes me feel like I was hit by a small clown car, not soo bad I guess, but complete crap! #2 I have allll these things I want to do tomorrow and when I sit in a car or lets say an Infusion chair strapped to an IV for 2 hours, I think about all the stuff I need to do...I honestly, no joke, worry myself into exhaustion. #3 I get super sleepy sitting in that dang chair eventhough they aren't too comfy and I hate naps...it crashes the whole day. I got over trying to rest when the girls did because Madisyn is a great napper. 2 hours! Whitney not so much and I could lock her in a cage and she'd still manage to get out and light the house on fire...okay, okay I exaggerate on the reality but that is not how my brain works. I know things are crazy but I would rather double check the locks on the doors and have one eye open on them to guarantee they are sleeping. By the time you factor in my 45 mins to fall asleep. Forget it! I'll just stay up. Man, what was this paragraph about...Oh yes, why I'm dreading tomorrow...and I am super excited to hopefully be feeling better from the meds. I am not completely a complainer...ha, right! But this is how I operate...All you millions of followers out there! ask one of my close friends...one little appointment...all of these worries. I have got to give it to God. I KNOW! I just got mad at myself. I worried alot today. Ran around being stressed. I packed a bag with my devotional and bible and didn't read it. Ugh. this all just came to me right this moment. Oh Man! I know that would have helped...and I left it all in a bag in my car...which also is on my mental "to-do list." I should write it down, the to-do lidt so I can sleep. And walk my bum out to the car to get my things. I have got to clean out my car!!!!
You want to see my totally awesome to-do list...(if it has a star then Shan: ask me about in the am, possibly not necessary to put all on the world-wide web...don't know if I'll have any stars...ha. probably ;) yay! spelled it right, right?)
1. check out paperwork in car
2. put away the 3 baskets of "get to it laters"
3. Whit's Cubbie verse
4. clean bathroom
5. wash car, clean out car
6. newspaper interview
7. clean out toys
8. begin first draft of letter to Curtis
9. make a calender asap! next week busy again (love spring break!)
10. FAFSA (oh thought, shan-laptop to infusion...start FAFSA, text on questions?)
11. make all my phone calls-attn. list...haha
12. contact prescription-fax
13. return shoes
14. call Dad. miss him.
15. double check with MJ about work for Friday (ugh, thats going to be rough straight from infusion...)
16. call Britt. miss her too. lots.
17. exfoliate (ha. i need a new scrubber thing shan. seriously help me remember, it took me 3 days to put the NEW soap in the bathroom...don't worry I had backup.)
18. always laundry. but not until Saturday ;)
19. take Kavi-Kavi on a walk...too tired tonight. but he loves me and likes to spend time with me!
20. oh crum! say happy belated anniversary to my dad. talked to my mom...27 years! yes, shannon, the dates look funny huh? 6 months later I WAS born...the stork was going on an early vacation...dropped me off ahead of schedule...thats why I am so odd ;) Not quite finished...
Well, that is all I can remember for now. I bet if I look at the 3 already started list I would find a couple more things to add...Oh! Call Cousin Sara and her new baby!!
So, basically I am nervous about tomorrow. I know it will make me feel better in the long run (hopefully short jog. haha. im lame!) and I have no idea why I am working myslef up to assume I am going to be stressed during the infusion...no joke, that just hit me. The realization that I am totally in the middle of a self-fulfilling prophecy...man oh man, I have to stop that. Ok, Im trying...all my might now. I need to take it to the cross...No, "NO" necessary there...PLEASE REFRAIN or I will have to cast the rebellion out of you! opps. Inside joke and I am not even sure if she will read this. I mean all the traffic to this blog may get so heavy that some won't be able to look at it...oh no! ugh. well, all this lame, super lame but fabulous humor is totally a sign that I need to go to bed. Odd, I get a message that I need to go to sleep from that but not about too much else...selective Melissa. Maybe I should change the title of this blog.
PS...got a sad message from another buddy, well my only buddy ;) that suffers from UC and seems to have the same attitude towards it as me. I get a decent day or two and know she feels horrible. Ugh. take a break UC! we have lives! and things to do! oh wait, you have no concern for our schedules, physical and mental health or our relationships...oh, why thank you...aren't you a treat?! NOT! SYKE! YOU ARE....SOOO NOT NICE! 9 yea, I gave it to that auto-immune disease...) pssshhh. I just asked for a flare-up didn't I? ha.
Thursday, April 7, 2011
Wednesday, April 6, 2011
smile, today was awesome enough for 2 posts!
I won't often be writing 2 posts in one day. I can't sleep right now. So, I figured I would write about some good things from today. Whitney's speech evaluation went really well. I left the appointment feeling excited and relieved. The trouble she has may just be a memory issue that could stem from even the smallest amount of brain damage that could have occurred when she was hospitalized. Between her breathing stopping, flat line...to the 7-day induced coma on a little one year old body could have left some brain damage from all the lack of oxygen that occurred while she was so sick. Her getting that sick and watching her struggle for those days is something I am just now, possibly admitting I need to face and get into with my counselor. But that is not important right now. I see a lot of light at the end of this poor speech issue! For now, it is back to basics. Talking to Whitney like she is around 18 months to 2 years old. Single words. Checking to see if she can come up with the word on her own (not saying it and then wanting it repeated back) and making sure when she does come up with a word on her own, having her say it correctly. This sounds so much easier than it is going to be, I know. I have a lot of habits to change in how I deal with her. Her speech-lady (thats what I will call her) gave me some good feedback on how to deal with certain issues and some things to change that all seem so apparently obvious NOW! Whitney did so good at the appointment. She was so well-behaved and cooperated like the sweetest 3 year old I've ever seen. I was and am very proud of her and how well she did at her "special" appointment.
I also ran into an old friend at the park. And it still amazes me how God works sometimes. This particular friend and I have a lot in common. We haven't talked in years. She is taking her child to a speech pathologist also. I saw her literally on my way home from the appointment. I decided to take the girls to the dinosaur park and there she was. She had some good advice and some more routes we could take to get Whitney more help. She also said something to me that I really needed to hear. I have been holding on to a lot of guilt about Whitney not being able to talk well. I feel awful that I am so distracted with 2 little ones and I spend too much time not feeling well. Most days I get caught up in the day-to-day mess of life and I worry that I neglected this "issue" with Whit's speech. Like if I tried harder to spend more time working on her words that she wouldn't struggle with any words. What my friend said was that there are a ton of kids that have parents that aren't good and don't make even the slightest effort and they can talk like crazy. I had never thought about it like that before. She gave me hope that Whitney will be okay...not that I doubted that but moms always worry!
I am so thankful for all the help I get with Whitney and her talking these days. She is making huge strides and we are just getting started. I am so lucky to have the support I have. I am forever and eternally grateful for my friends and family being so supportive. and especially to the Judds. Kippie and Pear-way :) We will get those names right soon enough...eventhough the way she says it now is too cute ;)
I also ran into an old friend at the park. And it still amazes me how God works sometimes. This particular friend and I have a lot in common. We haven't talked in years. She is taking her child to a speech pathologist also. I saw her literally on my way home from the appointment. I decided to take the girls to the dinosaur park and there she was. She had some good advice and some more routes we could take to get Whitney more help. She also said something to me that I really needed to hear. I have been holding on to a lot of guilt about Whitney not being able to talk well. I feel awful that I am so distracted with 2 little ones and I spend too much time not feeling well. Most days I get caught up in the day-to-day mess of life and I worry that I neglected this "issue" with Whit's speech. Like if I tried harder to spend more time working on her words that she wouldn't struggle with any words. What my friend said was that there are a ton of kids that have parents that aren't good and don't make even the slightest effort and they can talk like crazy. I had never thought about it like that before. She gave me hope that Whitney will be okay...not that I doubted that but moms always worry!
I am so thankful for all the help I get with Whitney and her talking these days. She is making huge strides and we are just getting started. I am so lucky to have the support I have. I am forever and eternally grateful for my friends and family being so supportive. and especially to the Judds. Kippie and Pear-way :) We will get those names right soon enough...eventhough the way she says it now is too cute ;)
Tuesday, April 5, 2011
Good day...so far!
I guess that title sounds a little pessimistic...but I am feeling pretty confident that God is going to give me a break for today from major pain, allergies, and worry. Church this last Sunday was awesome. It felt like God had told Pastor Ron that there is a little lady listening that needs to hear this today. It was almost like a lesson for me. especially being a "new" christian. I am in the learning phase I like to call it to myself. I struggle with understanding how to pray, worship, and just grow in my relationship with Jesus. I am finally starting to understand the ways that I feel most connected with Him. I want to make a much bigger effort to do more than just go to church and tune in on Sunday. I really enjoy reading my daily devotional that my Aunt Jeannette gave to me.
On a side note to this blog, it was such a "sign" or however you want to see how it is all coming together. I was trying to figure out a way to be able to do more reading about His word and try to begin to understand it and navigate my way through the bible. It was intimidating for me to just start reading. And I don't feel like I would get as much out of it, if I just straight read it. So, I talked to my BFF's Shannon and Brittany about what kind of bible did they use in the beginning or prefer to read now. There are a couple options that seem good to me. Easier to understand and some gave interpretations that help me UNDERSTAND what is being said. Anyways, I was feeling really down becuase I had made this huge trip and God blessed our way completely. From the wearher to how the girls did in the car for 4 days. And then here I am grateful to say the least for arriving safely but feeling like I was accpeting all these good things and not giving Him the praise and attention He deserves. I was completely broke also...Not just an exaggeration! Bibles and other supplemental books are not cheap! So, back to waht I've been trying to type out...My mom and I stopped to visit my Aunt, Uncle, and Cousins in folsom on the way up to my parents house. It was a totally spontaneous over-night stop but little did I know that God wanted me to go there and he has something special to give me through my Aunt. My Aunt and Uncle are very easy to talk to about my new relationship with Him. My aunt is always honest with me and has been since I was younger. She has a great way of explaining things and I enjoy talking to her because eventhough we don't talk often, when we do I feel like we connect and I trust her advice completely. I knew that she would be an awesome person to talk to about what kind of bible I should begin wtih and also gave me some versus to think about. Before we left in the morning she brought down her copy of "Jesus Calling" a daily devotional by Sarah Young. She said that she read it with her bible study ladies and most days the message applied to everyone in some way. Like he magically changed the writing to fit each woman. This something I have noticed too. It might be for me that I am so thirsty for knowledge and in need of so much direction and prayer that i am able to get something out of each day I read it. It is amazing to me that when I forget a day or two and then go back and read what I missed, it was something I really needed to hear that day and I get reminded of how important it is to read it everyday. Because the days I missed I can feel emotinally. I get down and side-tracked by material things or worries. Those things that aren't important and weigh down my heart. Okay, back to what the this is about...My aunt gave me her devotional and a copy of "The Message" bible. "The bible in contemporary language" they call it. It really breaks things down and speaks all the same truths as any bible does, just in Lame-mans terms for a beginner :) See, how amazing it was that we took this side trip and I was able to talk to my Aunt about how I was feeling about buliding my realtionship with God. And she happened to have worked in a Christian bookstore so she had extra copies of The Message. That is not something that most people just have "extras" of lying arounf their house! I am so thankful for that time that I was able to spend with my family and I know that the next time I go and visit I will leave feeling renewed in some way because I think God enjoys the fact that we will be talking about Him and giving praise to Him by coming together as family. So, thank you Jeannette :) I have no idea if you will ever see this. You have no idea how much it meant to me to spend that little bit of time together and how I think of it as something that was so important for me to have had that time in the point of my journey that I was on. I won't be forgetting it ever because it was a step closer in accepting Jesus into my life. Thank you. I love you!
I recently started a bible study for moms. It is amazing that the woman who started it heard Jesus tell her to do it. And it is right about the time that I needed something like that. This oppurtunity came just when I had such a strong desire to be able to connect with other women and in a way that will be positive in building my realtionship with Him. I am so grateful for this group of women and can't wait to meet up with them every week.
When I came home from Bible study this alst Thursday there was a present waiting for me on my bed. It was from My best friend Shannon. It was a bible. I cherish it just like I cherish my friendship with My Bluebird (Shannon). I am not good at explaining my feelings sometimes, alot of the time ;) I really needed that bible and didn't really know it until it was there, given to me. It is a soft, leather bible and I love the thin pages with gold on the edges. I am sure it is like a lot of other bibles but for some reason I truly feel like this bible was meant just for me. It sounds corny. It's not like it has my name on it or like it was dropped down from heaven above! I just feel like it is MINE. (ha! my girls are very into the "mine") I son't mean it as MINE like a spolied little girl. More like I am connected to this bible by heart strings. So, corny but I have to say it when something that awesome happens and I feel so much about it.
So, this blog rambled on and on. I know it seems all over the place. But that is how I am in my head! So, this I guess really does give some insight into the inner workings of me. It may be hard to read, if there is anyone actually out there reading this!
The girls and I are on our way up to Templeton in a little bit. Whitney is finally going to make it to her evaluation appointment with a speech pathologist. She has made huge strides in her talking and vocabulary since we got to California. There are so many people that take the time to work with her adn help her pronounce things more clearly. It is amazing how much attention she is getting and how many people that surround us want to help Whitney speak better and more. It is all out of the kindness of their hearts. It will benefit some people in the way that we will be able to to understand what she is talking about but besides that all that work is just to help Whitney gain confidence. I am looking forward to hear what the speech pathologist has to say about what may be making it more difficult for Whit to talk clearly and be able to say certain letters at all. So, pray that we get a diagnoses of some degree, even if it is just that she needs more time. Okay, we are off to get ready to go to her "special" appointment :)
Take care anyone who reads this...and remember to take any worries or darkness to the cross! ha. I am really working on that so I'm passing it on as a reminder for all!
On a side note to this blog, it was such a "sign" or however you want to see how it is all coming together. I was trying to figure out a way to be able to do more reading about His word and try to begin to understand it and navigate my way through the bible. It was intimidating for me to just start reading. And I don't feel like I would get as much out of it, if I just straight read it. So, I talked to my BFF's Shannon and Brittany about what kind of bible did they use in the beginning or prefer to read now. There are a couple options that seem good to me. Easier to understand and some gave interpretations that help me UNDERSTAND what is being said. Anyways, I was feeling really down becuase I had made this huge trip and God blessed our way completely. From the wearher to how the girls did in the car for 4 days. And then here I am grateful to say the least for arriving safely but feeling like I was accpeting all these good things and not giving Him the praise and attention He deserves. I was completely broke also...Not just an exaggeration! Bibles and other supplemental books are not cheap! So, back to waht I've been trying to type out...My mom and I stopped to visit my Aunt, Uncle, and Cousins in folsom on the way up to my parents house. It was a totally spontaneous over-night stop but little did I know that God wanted me to go there and he has something special to give me through my Aunt. My Aunt and Uncle are very easy to talk to about my new relationship with Him. My aunt is always honest with me and has been since I was younger. She has a great way of explaining things and I enjoy talking to her because eventhough we don't talk often, when we do I feel like we connect and I trust her advice completely. I knew that she would be an awesome person to talk to about what kind of bible I should begin wtih and also gave me some versus to think about. Before we left in the morning she brought down her copy of "Jesus Calling" a daily devotional by Sarah Young. She said that she read it with her bible study ladies and most days the message applied to everyone in some way. Like he magically changed the writing to fit each woman. This something I have noticed too. It might be for me that I am so thirsty for knowledge and in need of so much direction and prayer that i am able to get something out of each day I read it. It is amazing to me that when I forget a day or two and then go back and read what I missed, it was something I really needed to hear that day and I get reminded of how important it is to read it everyday. Because the days I missed I can feel emotinally. I get down and side-tracked by material things or worries. Those things that aren't important and weigh down my heart. Okay, back to what the this is about...My aunt gave me her devotional and a copy of "The Message" bible. "The bible in contemporary language" they call it. It really breaks things down and speaks all the same truths as any bible does, just in Lame-mans terms for a beginner :) See, how amazing it was that we took this side trip and I was able to talk to my Aunt about how I was feeling about buliding my realtionship with God. And she happened to have worked in a Christian bookstore so she had extra copies of The Message. That is not something that most people just have "extras" of lying arounf their house! I am so thankful for that time that I was able to spend with my family and I know that the next time I go and visit I will leave feeling renewed in some way because I think God enjoys the fact that we will be talking about Him and giving praise to Him by coming together as family. So, thank you Jeannette :) I have no idea if you will ever see this. You have no idea how much it meant to me to spend that little bit of time together and how I think of it as something that was so important for me to have had that time in the point of my journey that I was on. I won't be forgetting it ever because it was a step closer in accepting Jesus into my life. Thank you. I love you!
I recently started a bible study for moms. It is amazing that the woman who started it heard Jesus tell her to do it. And it is right about the time that I needed something like that. This oppurtunity came just when I had such a strong desire to be able to connect with other women and in a way that will be positive in building my realtionship with Him. I am so grateful for this group of women and can't wait to meet up with them every week.
When I came home from Bible study this alst Thursday there was a present waiting for me on my bed. It was from My best friend Shannon. It was a bible. I cherish it just like I cherish my friendship with My Bluebird (Shannon). I am not good at explaining my feelings sometimes, alot of the time ;) I really needed that bible and didn't really know it until it was there, given to me. It is a soft, leather bible and I love the thin pages with gold on the edges. I am sure it is like a lot of other bibles but for some reason I truly feel like this bible was meant just for me. It sounds corny. It's not like it has my name on it or like it was dropped down from heaven above! I just feel like it is MINE. (ha! my girls are very into the "mine") I son't mean it as MINE like a spolied little girl. More like I am connected to this bible by heart strings. So, corny but I have to say it when something that awesome happens and I feel so much about it.
So, this blog rambled on and on. I know it seems all over the place. But that is how I am in my head! So, this I guess really does give some insight into the inner workings of me. It may be hard to read, if there is anyone actually out there reading this!
The girls and I are on our way up to Templeton in a little bit. Whitney is finally going to make it to her evaluation appointment with a speech pathologist. She has made huge strides in her talking and vocabulary since we got to California. There are so many people that take the time to work with her adn help her pronounce things more clearly. It is amazing how much attention she is getting and how many people that surround us want to help Whitney speak better and more. It is all out of the kindness of their hearts. It will benefit some people in the way that we will be able to to understand what she is talking about but besides that all that work is just to help Whitney gain confidence. I am looking forward to hear what the speech pathologist has to say about what may be making it more difficult for Whit to talk clearly and be able to say certain letters at all. So, pray that we get a diagnoses of some degree, even if it is just that she needs more time. Okay, we are off to get ready to go to her "special" appointment :)
Take care anyone who reads this...and remember to take any worries or darkness to the cross! ha. I am really working on that so I'm passing it on as a reminder for all!
Monday, April 4, 2011
Pollen and Pounds...
Man-OH-Man!!! After a round of anti-biotics and maybe 2 days of feeling a bit better, my allergies sneak up and bite me on the bum! I haven't dealt much with allergies in the last couple years. In the south, it was rare that my allergies would flare up. My doctor prescribed a nasal spray that she said is the best for allergy sufferers. BUT, it can take up to 2-3 weeks for it to start working. So, in the now, I have to just continue the benadryl, nasal decongestant, aleve program...and the girls are suffering too. Poor little coughing girls with runny little noses :(
One of the huge issues for me with UC is the weight fluctuating...I can weigh anywhere from 123ish-to 130. And this weight range often changes on a weekly, sometimes daily basis. So, not only do I feel like crap on the inside but I feel like I look like crap on the outside as well. I am ruining my metabolism I bet! Not that I even had a good metabolism to begin with and now I am messing it up all the time. I binge on cheese, sweets, and salt/sodium snacks or meals. If I stuck to a better, balanced diet then my weight could get down to a number I feel good about. I need to work out! Geez, I am soooo out of shape. Keeping up with the girls and doing even a couple small chores makes me feel exhausted. I am so sick of feeling exhausted. I am exhausted of the exhaustion! I just want something to be maintained. Hopefully I will feel so much better after my Remicade infusion...kind of ironic that an immune surpressor is going to help me feel better amd hopefully put me into a state of remission. I can only pray this friday infusion will make a huge difference and then I can FINALLY get caught up on all my chores and important tasks like job stuff. Oh Friday, You can't get here quick enough!!!
One of the huge issues for me with UC is the weight fluctuating...I can weigh anywhere from 123ish-to 130. And this weight range often changes on a weekly, sometimes daily basis. So, not only do I feel like crap on the inside but I feel like I look like crap on the outside as well. I am ruining my metabolism I bet! Not that I even had a good metabolism to begin with and now I am messing it up all the time. I binge on cheese, sweets, and salt/sodium snacks or meals. If I stuck to a better, balanced diet then my weight could get down to a number I feel good about. I need to work out! Geez, I am soooo out of shape. Keeping up with the girls and doing even a couple small chores makes me feel exhausted. I am so sick of feeling exhausted. I am exhausted of the exhaustion! I just want something to be maintained. Hopefully I will feel so much better after my Remicade infusion...kind of ironic that an immune surpressor is going to help me feel better amd hopefully put me into a state of remission. I can only pray this friday infusion will make a huge difference and then I can FINALLY get caught up on all my chores and important tasks like job stuff. Oh Friday, You can't get here quick enough!!!
Saturday, April 2, 2011
So, whether I want to or not...I better face some things...
As far as my UC goes...I am going to have to make my relationship with sugar-free redbull and Diet mt. Dew a "treat" to suffer for. I am trying so hard to drink water instead of jump to caffeine. NOT EASY! I am so tired all the time and really wish I could get jump starts all day. A balanced diet is what I need and I am working on it. I'm just trying to change 26 years of habits like not eating because I'm anxious or eating because I'm anxious... I know I could be worse but DAMN...sorry! I am so burnt out. I wish I could eat decent for one meal, not stress for 5 minutes, and take my meds regularly and BOOM, I'm better. Deiscipline, I struggle with in all areas and I always put myself last. I know its weak but I want to avoid pain with pills, eat when I FEEL LIKE IT...not because I should and not have to worry that the stress I have and don't even want...is making me ill...ugh. I just needed to vent. but I do not actually think that anyone could live healthy like I do know anyways, let alone someone with this awful pain in the bum-disease ( Cant come up with a better word...)
I had an awesome counseling session like I figured I would. But I am trying soooo hard not to cry about my issues, all of them, and that was all I wanted to do. To fight that was hard but I am not the baby here, my kids are. Grow up Melissa, you did it to yourself...and now you wonder why life is hard...anyways, not like everyday is going to be a good day but I wish today and for awhile they could be better. I'm not ready for more pain. Emotional pain. But I guess God doesn't give us more than we can handle and as long as I keep my eye on Him, He won't lead me astray.
I had an awesome counseling session like I figured I would. But I am trying soooo hard not to cry about my issues, all of them, and that was all I wanted to do. To fight that was hard but I am not the baby here, my kids are. Grow up Melissa, you did it to yourself...and now you wonder why life is hard...anyways, not like everyday is going to be a good day but I wish today and for awhile they could be better. I'm not ready for more pain. Emotional pain. But I guess God doesn't give us more than we can handle and as long as I keep my eye on Him, He won't lead me astray.
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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