A reader posted these questions in my comment section. I'll do my best.
1. How do you check to see that your costo is still around? Is there a certain movement that you do or can you just feel it regularly without movement? Is it only on one side?
I feel it constantly, on the left side. Occasionally, on the right as well.
2. Is your chest tender? Can you feel it underneath your clothes?
Yes, tender to the touch and Yes. Always
3. What methods of pain alleviation help you? Have you ever seen any kind of improvement or is it too hard to tell?
That's a loaded question that I'm walking through and working through. The biggest change I've seen is while keeping a calender of my pain, it's gone down a couple of notches as I've figured out what makes it worse. This way, I can nail the sources of aggravation. As you read through the blog, you can see has worked and what has not. And I blog about what I've tried HERE.
4. What kinds of natural anti-inflammatories are there? I'm worried that I am taking too many Ibuprofen and needing to get my kidneys flushed.
Unfortunately, I'm not an expert in this area. I stopped taking anti-inflamms because they didn't help me. I did at one point take natural willow bark. I'd go to your local health food store and chat it up with them. I think it's a balance of taking the edge off...and trying not to mask the pain, but digging to find out why we have it in the first place.
5. How often would you say you check for pain and if so, how do you check for it? Do you think this leads to increased inflammation?
I don't have to check for it, it never goes away. If a costo sufferer has to check for it, that's a great sign. I feel it just standing and breathing. It's not a matter of if it's there or not, it's a matter of if it escalates to where it's stabbing-heart attack feeling-can't catch my breathe pain, or moderate pressure- in- my- chest-I can't -think -about- anything- else -but- THIS- pain. And yes, if a costo sufferer is constantly checking for the pain, I do think it will get more aggravated.
6.a. Has you ever felt this kind of pain in your back?
Yes, when I was diagnosed, I felt I was walking around with a spear sticking through my heart to my back. The massage therapist has saved the day with my back. I still have to be very aware of my posture and stretching so that my back doesn't pain the for the sins of my ribs.
6.b. Is yours only on one side and if so, which side?
Left side, sometimes on the right. But always on the left.
7. What would you say is your daily schedule (Heating, diet, exercise) relating to costo and what methods you think have helped?
It changes depending on what is helping and what's not. I'm always on the hunt for the formula that works best for me. Currently, almost daily, I ice, walk, rest, medical massage therapy, skilled relaxation, keep a calender, journal, pray, read, sauna, eat organic, now trying gluten free. It's all trial and error.
8. Do you believe in the possibility that costo needs to be inflamed in order to get blood flow to the area in order to be healed?
No. I think circulation is key, not inflammation. This is why light exercise, sauna and massage therapy can be helpful in the healing process.
9. What did you in the two years where you were not diagnosed with costo? Did you just continue to work out regularly?
I was terrified every day, not knowing why I couldn't breathe without pain. I continued to work out. Hard. Very Dumb. Very driven, but very dumb. But I had no clue that I was making it worse. At that time the pain was so bad- I couldn't tell the difference between the pain of breathing or picking up a 20 lb weight- it all killed me. I did, however, stay away from the beach press- both a regular bench press and an overhead bench press. I ended up in the ER every time I tried one. Then slowly, I became more debilitated, and stopped it all together. The bouncing from just walking would take my breathe away.
10. What was the exact exercise that led to you having costo?
I was driving down the road to work when I had my first attack. I was just....driving. I do not believe mine is trauma alone. I believe it's auto-immune, emotional, and food related as well. I was training physically VERY hard at the time. I had just changed my diet, my physical routine, and had just had my heart shattered into pieces by my 7 year on and off again cheating man who got another girl pregnant. Ladies, if he shows you who he is the first time? Believe him.
-)
Alright, so there you have it. Ladies and gents, I'm no pro and my answers may or may not help anyone. But if you have learned just one little helpful hint from this blog, I am BEGGING you to put your story out there for others to read or listen to. I don't care if it's on this blog, or an e-mail to a friend, a FB page, or in support group, or a forum, or sharing with all your co-workers. Share your condition. Pay it forward.
You can help others with their condition by taking just a few minutes to talk about yours. Share your story. We gotta tear down the fear and stigma that comes with invisible illnesses. And by sharing with just one person your story, so can they learn from you, it becomes a little less invisible.
End Rant.
Dearest Lucy,
ReplyDeleteI haven't written in a few days but I have been following the blog daily.
I just had 10 days of no pain and no meds. I have been so hopeful and of course I still am, however the pain hit again today. So feeling a bit of a pity party coming on.
I had been prayed for and instantly began to feel WAY better. Like 95% or more! For 10 days! I know God did something as I have never gone that long without pain for 9 months. And I will continue to contend for complete healing for both of us (others too!)I was just so ecstatic to go about daily life pain free!
I have to admit I am a bit confused right now but won't give up.
I am very curious about the celiac and will write more about that later. Have you had any relief eating gluten free yet?
This last post described me so well. Don't have to check for it, left side that sometimes spreads all over, sick of anti inflams...
A new song I'm clinging to "Desert Song" by Hillsongs United.
My love and prayers are with you and for you!
Jenni
Hi friend!
ReplyDeleteCan I just say that I literally SQUEALED when I read that you had 10 days of no pain. I had to celebrate that big time. I chose the robot dance.
....before moving on and wanting to get a huge bag of chips and chocolate and sit on a couch and chat to you about...well...I guess sadness is the only word to share what having no pain and then having it again can feel like. I know you are a strong woman who puts her faith in God and you'll be okay, but you just let yourself feel that sadness so that you can move through it to hope, k?
That's so awesome that people have prayed over you. And that you can receive their love this way. Keep me posted on how the pain goes this week?
So I've had a bit of a roller coaster with the celiac. Was very excited. Then it turns out about everything on this Earth has gluten in it. lol. So get this, so far, I have not made it ONE day without the dad gum stuff sneaking into my food one way or another. Sheesh. It's a sneaky little substance. However, this is cool...I went through my food and pulled out EVERYTHING that I notice makes a small difference in how I feel after I eat it. And ALL of it contained gluten. Wild.
Last Friday I woke up and I could breathe really deep- it was awesome...then I freaking ate bbq sauce not knowing it had gluten and I went downhill fast.
....starting a food journal tomorrow...ick. However, I have a lot of hope in conquering 100% gluten free this week to see how it goes. I'm so curious about it. Hopeful, but tentative. Once I'm 100% gluten free, hopefully I'll see a change or not a change so I'll know.
But I googled costo/chest pain and costochondritis/celiac and found a lot of people who are celiacs with costo. Wild huh? Maybe that was me reaching...but I was pumped anyway.lol.
Forgive for not remembering...does your costo seem affected by food?
God has put this thought on my heart all week about how "we should continue to take steps in faith and let Him control the outcome." So you keep stepping.
..."because we know that suffering produces perseverance, perseverance, character, and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit whom He has given us."- Romans 5:4,5
Lord, please be with Jenni this week, watch over her, keep your strength in her heart. Show her what path you are taking her on. Show her her what's causing this pain in her body. Make her acutely aware of the source of her pain...and heal her. And while you are taking her on this journey, please continue to comfort her, clothe her in peace, and shower her in joy. And we give you glory for those 10 pain free days.
Amen!
And I love Desert Song- BEAUTIFUL!
Lucy
Lucy,
ReplyDeleteThankyou so much for answering all my questions. We share many similarities: having it on the left side, the strange tenderness and our belief in the necessity of blood circulation. The only difference between us is I heat as opposed to ice, :D.
Strangely enough,I had my first attack the day after I worked out rough or maybe I just never noticed it.
After all this time, I think one of the biggest things is just to leave the costo alone. I feel like the few times it has felt slightly better have been the times I tried to forget it was there.Try to take this into consideration, I think it may help.
If I ever figure out an answer to remedying this condition, I'll be sure to tell you ASAP but in the meanwhile I do appreciate you answering my questions.
PUSH ON LUCY!!!!
-Justin
J-
ReplyDeleteMy pleasure! Thanks for taking some time and sharing your thoughts.
I will take that into consideration. =)For me, I think since I spent 2 years not knowing what it was or what to do about it, I may be a little crazy now trying to get it under control. lol. But I can totally respect your peaceful perspective.
You hang in there as well and let me know how you're doing from time to time, k?!
Enjoyed chatting with you. You crack me up. =)
Hugs,
Lucy
Hi Lucy,
ReplyDeleteIs there any chance you could open up a new post where people can share what makes their costo worse! Because I've noticed a couple things that make mine worse, and if everyone could share their differences in what makes it all worse then we could avoid these!
:) Just an idea,
Thanks,
Sophie xx
I just commented on your latest post, Lucy. But since I came home from work early for the first time due to pain that drove me to tears, I have time to finally sit in bed and read all your posts, going backwards. This post started the water works. Thank you to whomever wrote the questions because your answers (even though I already identify with you on so many levels) made me really identify so closely, down to the heart break from an on/off relationship that you think will get better the next time around. And now I can hardly type because my cuter-than-buttons mini-chihuahuas ran to my face when they heard the cries and started licking. Some people find that quite disgusting. It's the sweetest thing, though. I'd like to think they are doing so because they love their momma and don't want to see her hurt. But deep down I know it's because they like the salt. :) Wow. Thanks. Don't know why this one hit me, but it did.
ReplyDeleteBe prepared for several comments from me today. It's a Friday night. My on again/off again boyfriend is out of the country, and I am in bed in pain. What else have I to do but finally read the whole blog and comment. And cry. :) Somewhat happy tears. Or tears of relief that I've found I'm not crazy and imagining this stuff up in my head. I hope every costo sufferer finds your blog!!!!!!!!!!!!
Angela,
ReplyDeleteHey there sister! I just finished writing responses to your other comments and wanted to say that I'm so thankful for all the comments you have left tonight! It's been a real joy to get to know you better. You're so stuck as a friend to me now! The tears, the prayers, the laughter. Hey,that qualifies as friend material to me. lol.
And your little dogs sounds so sweet! What a precious gift. Made me hug my stuffed bear a lot closer. lol.
Thanks for taking the time to read the blog. I'm glad you found it as well.
Many hugs to you!
Lucy
see, now that answers a prayer of mine...for God to give me a new friend. my best friend moved away about a year and 1/2 ago and about that time, i started working like 168 hours a week--yes, even in my sleep.
ReplyDeleteso, it's ok that you live across the continent. seeing as i barely have time to go out with friends, meeting a friend that i could get to know while motionless in bed (but certainly not emotionless!) is sort of the answer to my prayer. not to say that i wouldn't hit it off with you if we were in the same town and could go see a movie with me, or get our nails done together, or drink hot chocolate in a fufu little chocolate shop (to help nourish the girly side of you, of course).
so glad. now stop crying. reading your response made me cry all over again. we've got to stop this cycle. :) so blessed. you make me giggle and laugh. going backwards, i made it to september of 09 on your blog. getting sleepy and will read the rest tomorrow. have a lovely weekend.
see my family's blog about my dad: sawdustandjazz.blogspot.com when you have a chance.
p.s. i'm going to share your blog with my bff who moved away, so now i have to put in the disclaimer that she's still my bff. rach, you've not been replaced! :)
ReplyDeleterach doesn't suffer from costo, but she'll want to read all about it because she cares about me and this condition a lot. she's so happy to know i've identified the prob. now she'll want to be a part of the solution!
and lastly, click on the link on my blog that says ethereal. that's where my photo collaboration with my womb-mate is. i'm gigi. she's georgia. that's where my best work is. and p.s.s. when you scroll down far enough, you'll see one of my black and white photos is of dismantled baby grand piano parts--parts from the culprit of my costo, i'm sure! let me just clarify, playing the piano didn't give it to me; lifting it on to a truck did. my assistant and i singlehandedly (i guess that's doublehandedly) lifted a BABY GRAND on to a truck. why didn't i just go for it and lift a full size grand piano?!?! that's back when i thought i was strong and could lift anything. i remember while lifting, "hmmm, i've always thought of myself as pretty strong, but i think i just might be overdoing it here, possibly even doing damage to my body..." little did i know...
Okay, I'm stopping the crying cycle too. lol
ReplyDeleteYes, being friends will help "nourish my girl side" lol. That's funny!
Thanks for sharing with me the blog in honor of your Dad... and the crying almost started all over again- lol. SUPER awesome blog. He sounds really great, Angela. It's such a beautiful blog. Really. What a tribute to him and such an awesome way to celebrate him!
And the Ethereal blog. WOW! You girls are really talented! I love that it's a blog you girls to together. And once again- I WANT A TWIN SISTER!!!!!!! lol.
And I glared at the piano in your honor-haha.
Lucy
PS -Hi Rach!!! =)
ReplyDelete