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Hi ladies
Its been hard to reply since work and life has just been so busy for me lately.
I think that since I felt normal (no symptoms this past Sat, which is RARE for me), I over did it on Sat and Sunday getting ready for the holidays. Plus, I didn’t sleep well for 2 nights straight and waking up way too early (for those moms with little ones, you know what I mean… my 4 year old son wakes up at the crack of dawn).
I was very restless last night and have hardly slept. I started listening about a week ago to the Brain Sync CD’s (which are great BTW) but it just didn’t do the trick for me last night. My brain just wouldn’t shut down!
Today, I woke up so extremely exhausted and have bodily aches/pains down inside legs, eyes and head hurting. Plus, my intestines feel inflamed. Its weird how your body reacts to this, I feel so ultra fragile right now. I think I just over did it this weekend. Ugh. I hope to get some good sleep tonight even though my 8 year old yellow lab wakes me up in the middle of the night to go to the bathroom (twice a night).
Anyone else feel run down to the point where your body is telling you to STOP/take a break? If so, aside from sleep, what else works for you? I wish I could have stayed home from work today but being that this is the last week before my company closes for 1 week, I just couldn’t.
Anyhow, I pray this goes away soon. I sure wish I had coffee or any sugar today! Its been very hard to be good especially with all of the goodies in the office (luckily, I have not given in knowing the pain it would cause). Wishing you all a Happy Holidays and restored Health to all of us in 2012!!
Sorry
I'm sorry to hear that. Sometimes, no matter what I do I can't sleep at night either. I told Matia in our last appointment and she is working with me on that. I am getting better though the past week I have slept very well.
Sometimes when I feel very run down, I just decide ok I just need to rest when I get off work. No cooking, no cleaning. I just go get a protien burger (lettuce only), and french fries from IN-N-OUT. Then I go home, put on my PJ's then just watch T.V. Sometimes you just can't be Superwoman and you just need a break. Don't feel guilty just do it.
I know what you mean about the goodies at work, there are so many cookies and chocolate boxes at my work. I feel so bad but today I gave in and had some chocolate. I know it's bad, it was just hard because it was the first day of my period and I had very bad cravings.
But you can do it, stay strong! Get some rest!
Hi Adriane, Sorry to hear the
Hi Adriane,
Sorry to hear the holidays taking a toll on you. Last year around this time, i was too depressed to enjoy the holiday season. This year, i am hopeful and trying to enjoy the holidays but i feel like my body can only take so much. I run around and sometimes forget that i need to take it slower and it follows with getting sick somehow, either weak and no energy, or i catch cold/flu so easily i wonder if my immune system is getting worse? I seriously get sick everytime someone sneezes around me!!!!
My only remedy for you is to snack more often, do not miss meals and try to sleep really really early if you feel weak. Before IC, i wouldn't sleep before 1:30 am, come home late after work and had to watch some shows before i can unwind. Now i try to sleep before 12 but if i am not feeling good, i'll go to sleep by 9:30 -10!! I take an extra blanket with me to bed and sleep warm. Feel so much better the next day.
As time goes by, it gets easier to ignore those goodies around the office, you almost don't like or crave them anymore. Once in awhile, i'd crave the seasonal chocolate truffle drink from starbucks, and thank god they don't have it on their menu this year :) Take care of yourself, and happy holidays to you as well.
adriane, i know what you mean
adriane, i know what you mean. there have been one time when the pain has been minimal and i over did it by cleaning the living area, bathroom, bedroom, vacuuming, washing dishes, and getting laundry ready. that evening i had a backache, joint and muscle pain. i feel that whenever i have minimal pain, i try to make up for days i couldn't do much. i told myself "i need to take it easy," but i guess with ic pain when the opportunity is there, i have no choice but to go nuts. and yes, it was so so HARD for me at work. last week, people brought in homemade cupcakes, cookies, cakes, you name it, we had it. i swear i thought about taking a bite, but i cheated on thanksgiving with a slice..or shall i say slices of pumpkin pie. i told myself i'm not going to do that unless it's my birthday. you know what i tell myself when i see sweets, "it's pain june, and besides the eating it takes few or several minutes...will it be 10 min. of ecstacy or lifetime of looking slim & sexy, being happy, and being pain free?"
happy holidays and happy painless 2012 for all of us.
Thanks ladies, I slept well
Thanks ladies, I slept well (been up since 4am). However, my frequency is back to every 10-20 minutes all day with burning. My BM’s are off (loose) and I have gone 3 times within less than 24 hours! this is not good? or is this ok? My legs have stinging/burning again and very hard to sit here at work. I don’t understand this. I’ve been agitated all day due to very slow and frequent urination. I feel like I’m not progressing. This is very depressing. I just need to get through the work day. I don’t understand this disease. I’m now at week 10 and feel like I should be much better but perhaps I’m doomed to take the long road? Or just not get better. I don’t know right now…
I will reply to all’s posts (thank you) once I feel better, I’m really just down in the dumps right now and need to stop worrying about this but don’t know how I will be able to get through the holidays if Dr. B isn’t around. I know she will be but want to give her space so she can enjoy the break. I just cant think rationally right now, I’m just in pain.
Scoop on the poop
While loose is not the ideal - going more than once a day is. Dr. B just loves it when I tell her that I go 3 or 4 times a day. Isn't it great to know that you're excelling at this event? :)
Ok - considering how you're feeling - I'm probably way too cheerful - I'm sorry. This is the thing - I truly believe that you're going to be a new woman here pretty quick.
Hang in there.
Hey Adriane
Hey Adriane,
Whenever Dr. B changes more herb protocol I get very similar symptoms. I get urinary frequency. But with slow, weak urinary flow that doesn't feel like it completely emptys. I also get very loose stools (almost a sand like texture). I have always thought that my body was just trying to adjust to the new herb protocol. For me things usually gets better within a week to a week and a half. But if it just gets worse then that's when you have to email her. She may need to change something with your herbs to make you feel better. I don't think she goes on vacation until 12/22.
adriane, i get it
adriane, i get it. i'm a newbie myself. i've been with dr. b for 2 1/2 months and constantly, i'm thinking "why me, this is so unfair," "when am i going to get better," or "when is this going to end?!" two weeks ago, i wanted to call 911, seriously my pain level was 10. i was crying because i literally thought i was going to die, but here i am....i survived and guess what it was this past friday when i had minimal pain (pain level 2). it was great, i thought i could live the rest of my life like this since my pain is 7 or 8 every 20 min. and down to pain level 3 or 4 right after i pee. i kept on asking dr. b when am i going to see any results....ofcourse she and i both knew it was up to my body. i feel finally i'm seeing a slight change and from few others they started getting better 3 or 4 months into treatment. please read my post "feeling better?"
I PROMISE, you can survive this. remember it's a very slow procress. you'll feel like you r back to square one and that's because this healing process is two steps forward and one step back...and you are taking that one step back right now. by the time you know it, you'll be moving straight forward. :o)
Been up an hour now, since
Been up an hour now, since 4am and in some deep pain, scared but my husband was able to calm me down a bit. I try not to cry because it causes more pain. The pain level crept up this morning to 7ish, just deep vaginal burning, like maybe its actually a UTI? I'm wondering if I should take an in home test... Yes, I did contact Dr. B after lunch yesterday but havent heard back (which is unlike her and I'm sure she is super busy).
On a good note, my husband let me open my christmas gift early before he had to leave to work this morning. He said is was so I can take my miind away from the pain today as he knows I will be in pain all day at work. We have been together for a long time, met at 18 and he just turned 40. Needless to say, he has seen the healthy me and the current me. This illness is a challenge for us all but I am thankful he is supportive (most of the time). He and our son got me a beautiful charm bracelet. The sentiment behind it is perfect... a dragon charm because our son loves 'How to Train your dragon', the letter J for our son's name, Jacob, a blue flower charm and two hearts. I typically am not the person to share something so personal but as I lay here in bed, in pain, I just feel inclined to. I feel so vulnerable, what happened to the old, confident me? Sometimes I wonder if I will make it to next Christmas. I am grateful for making it to this Christmas, albeit not feeling 100% well. I think that as my husband tells me, being on BC for 4 years has really screwed me up in that it physically, hormonally and mentally has caused these things which I'm going through right now. Its hard for me to comprehend this when your brain thinks irrationally during struggles like this. He relates it to like being a drug addict and my body is going through major withdrawals. YOu all are right, its been less than 3 months. But the struggles, the 'humbleness', the empathy which I now see from those who I never even thought of before... I understand now. It could be worse, it could be terminal but its not. So I will move on, somehow. Today will be hard, I dont want to get out of bed, I just want to wallow in bed, turn on the TV and just cry all day. But, that isnt an option. Not sure what my point hee is and sorry for the rambling but it is somewhat cathartic. Perhaps I just needed to do that to start off my day.
Thank you for the support from you ladies. You guys are my rock. When I get down today, I will hear you pulling me back up, telling me to keep going and dont give up. Even if it means me running to the toilet for the 20th time. Living with IC sucks, but I'm determined to fight this to the end.
Oh Adriane! I am so sorry you
Oh Adriane! I am so sorry you are feeling poorly! Of course you will make it to next Christmas....I find that after a tough patch, the next few days are better and that time will increase until you find yourself SO much better! I understand how scary it is to not feel well when you feel you are doing everything you possibly can to feel better ... it feels life just kicks you in the face! (or the bladder.... is more like our reality)
What an incredible gift, from an incredible husband! I am sending you good, positive energy at work today! I really liked the idea (I think it was Junie) has about us all actually getting to celebrate together one day when we are all well. I put that positive image out there a lot on my tougher days when I need to channel some hope. ..Take extra care of yourself today,
Katie
Oh hOney (((((((hug))))))))
Oh hOney (((((((hug)))))))) Your husband is so loving and kind. Add that to your grateful list.
My husband and I have been together for 22 years this year. Can't believe that because that makes me feel old but we started dating when I was 15!!! I fight the guilt feelings often. Where did the cute young blonde go?? But I know I am so grateful too that I hae this partner who has been there through 'sickness and health".
You'll get where you want to be. You really will! This treatment hits huge bumps all the time I feel when we are making big changes internally. I hoe you come out of this stronger and soon!!!
sorry for the awkward grammar- don't have a lot of time but couldn't ignore you!
Praying for you
I am a new patient of Dr. B's, but I have been reading everyone's posts for a week before I began with her on November 23rd. I feel like I know you already Adriane, and I have been praying for you and others when I read of the pain of IC. I have been wanting to write in but my daughter just got married last Saturday, and it's been a bit busy around here. It's so difficult, I know, to suffer with this disease. I developed IC last year (I was 50 years old) and just 3 weeks before we went to get our new 11 month old daughter from China. She is our fifth child, and I had no idea what my body was in for. I remember crying in the tub the night before we left as I was in so much pain and just praying to God to help me make this long trip to get our new daughter. (My other children are all grown up, so we are starting over after waiting six years for our little girl.) I was in a flare almost all the way to China on the plane, it was such a difficult flight. Since I was diagnosed just before leaving, I had no idea what to eat or what not to eat. Progressively, I got worse over many months, even after changing my diet time and time again. I then became a new grandmother twice in two months in addition to being a new mom again. It was so difficult to watch my babies when I was flaring, which became more frequent, of longer duration, and more painful. Then by God's great grace, I found Dr. B! I am doing so much better, but I still have issues, of course, including insomnia among others. You will get so much better, too. I am learning to love List One Foods, even though I cannot tolerate the nightshades (potatoes) and butter. Here is one of my favorite recipes which is my Christmas gift to you, dear Adriane. It is such a comfort food.
Mac N Pesto
2 c. homemade chicken stock
2 c. rice pasta macaroni (I like Cadia brand)
Put in a rice cooker and cook until steam is coming out of hole in lid, there will still be liquid in the bottom. Shut off. Add in:
2 T. homemade pesto (I use 2 cups fresh basil, 3/4 t. salt, 1/2 t. garlic powder and process in food processor, then add 1 1/3 c. olive oil slowly in a steady stream til processed in to make this pesto.)
1/2 c. chopped cooked chicken or other meat
1 c. cooked veggies or frozen broccoli
salt to taste
Stir well, then cover and put on warm til everything is warmed through. My family loves this recipe! I also use leftovers in soup, or sometimes with scrambled eggs, or on top of a salad.
Basil Tea
It's really delicious with Basil Tea. To make this you just boil a big mug of water, then put in 2 t. of dried basil, let steep a few minutes. Then strain through a fine strainer, It's really delicious.
God Bless you!
Welcome Mrs A.! So glad to
Welcome Mrs A.! So glad to meet you! I am so glad you are starting to feel better already! Congratulations on the new baby! My husband and I have often thought of adopting a baby girl from China, I am so glad you were able to add to your family but so sorry you have to deal with IC at this time. Hopefully you will be feeling much better soon!
Thank You, Christine!
I am so thankful for our little girl, the long wait was worth it! When I am struggling with pain, she will pat my hand and say, "It be okay, Mama, it be okay." She is such a comfort to me. :) I am feeling so much better than I was and working through the rest!
Mrs. A
Hello - welcome. I'm so happy that you found your way here. Boy, are your hands full with new baby. My little adopted baby was from Korea - She's now 25! Don't know how that happened.
Best wishes,
Thank you all ladies for your
Thank you all ladies for your support and I’m sorry for the delayed reply. Work is so incredibly busy since we are off for a week closure (I cannot wait) since I hope this will give me time to see how much the work stress impacts the IC and IBS.
Mrs. A – I cannot begin to tell you how much your words meant to me as I read them on my iphone yesterday afternoon. Thank you as it came at the right time while sitting in a meeting in so much discomfort, I almost burst out in tears (boy, would they really have thought I went crazy). But in all seriousness, wow, you sound like truly an amazing person. I too believe in the power of prayer (practicing Catholic) and often times, I doubt in times of pain but I’m learning to not doubt Him for he truly has a plan. Welcome to this site, you will see how great & supportive these woman are.
Thank you for the recipes! I am excited to try them out next week. I’m dying to try the pesto. I think I may add in shredded mozzarella as it doesn’t impact me. I know this will become a staple since my husband loves to try new recipes and I will ask him to make this for me.
About your recent adoption, this is truly amazing. We have one 4 ½ year old son and after a difficult miscarriage, then a hard pregnancy and 28hours of labor, I just don’t think my body can take it. We are hoping to adopt once I’m better and I’m more secure in my career as this economy has really impacted me (I do believe the stress of having lost my job of 13 years/our home, BC has caused me to spiral down and get IC). If it’s in the plan I would be happy to be a mom by adoption.
To all the other ladies whom I haven’t replied to yet, THANK YOU Deir, Tinkerbell, Katie, Junie, Calive (I hope I didn’t leave anyone out). I have read and re-read your words of encouragement over and over the past few days. This has helped to hold me together and keep going and get through the work day.
Dr. B, added back in Siberian last night which has settled things a bit (I’m functioning). I am now taking around 6 supplements altogether (the most ever) and I pray that this gets me as symptom free as possible until I speak with her Jan 4.
I better get back to work but didn’t want you ladies to think I was ignoring you. Hoping you are all well. I really like the idea about getting together and meeting when we are all better. I am up for it!
It's So Good To Be Here
Thank you Denise and Tinkerbell for your warm welcome...I can't say what it means to me to be able to read everyone's posts of encouragement, or even just general conversation. We are all such kindred spirits here and understand each other's pain and triumphs in all the baby steps of overcoming IC.
Adriane, I am so thankful to be of some help to you. I pray all the time, too, and truly believe I could not have gotten through two weeks in China without God's strength. The amazing thing is that my little girl has all the same food allergies as me (well, except potatoes). She is allergic to dairy, soy, and gluten as I am. I was able to address it pretty quickly when we brought her home because of my own struggles with each of these food groups. I was so thankful to God for that!
I am amazed at you and all the gals on this list who are working full time with this disease. You are all so amazing to me. I am a stay home mom, and I can't tell you how many times I have thought of you all working in pain when I am able to be home. You are true heroines to me.
I love to cook. It is my hobby, as well as delight. I had been on the Anti Candida diet for 4 1/2 months before seeing Dr. B. and I thought that diet was difficult, but List One is much more challenging. Especially being gluten and potato intolerant. A little while ago someone posted, "I love my homemade foods!" And I thought to myself, "so do I!" I started thanking God for my "manna" from Heaven on List One, and I've been really enjoying cooking once again. I am 5"7, and my weight is down to 118 pounds, but I have now graduated to List Two since my appointment with Dr. B two days ago. I am so very thankful for her crucial work with us all. She is another one of my heroines.
I had chips and guacamole today. Here is how I did it:
Rice Flour Tortillas
1 1/4 c. brown rice flour
1/2 t. salt
1 T. olive oi
Mix all together and add 2/3 c. water. Mix a bit and let sit 1 hour. Take a golf ball size of dough and roll out thinly and very delicately in rice flour. (You may have to patch here and there, but I don't mind.) Transfer to a flat, hot iron skillet with a big flat spatula. Cook on both sides. ( I love these with sauteed celery, zucchini, yellow squash, celery, and cooked chicken.)
To make chips:
Cut tortillas into triangles, brush both sides with olive oil and bake on a cookie sheet in a 375 oven for 10-12 minutes until toasted.
Guacamole
flesh of one avocado
salt to taste
garlic powder to taste
Mash all together and enjoy with rice chips. It's heavenly to eat a chip!
Hi Mrs A,What a blessing
Hi Mrs A,
What a blessing to have you here and your wonderful recipes as well. Thanks for sharing and keep posting. :)
You said you allergic to gluten; do you use some kind of special brown rice flour?
Thank you Blondy
Thank you for the welcome! The brown rice flour I am using now is Jaffe Bros organic brown rice flour. But if I can't get that, I use Bob's Red Mill. I have to share another recipe. This is a cookie I make for my little girl. It would be good for someone on List four or five, if I remember right. But especially nice for someone gluten intolerant.
Maple Shortbread
1 c. plus half of a 3/4 c. of brown rice flour
1/4 t. salt
1/2 c. olive oil
2 T. maple syrup
Mix all together in a bowl, then spread batter evenly over a parchment lined round glass baking pan. Bake at 375 for 25-27 minutes until lightly browned. Cut into wedges as soon as you take it out of the oven.
This is a lovely recipe with tea. :)