Friday, June 01, 2012

One day at a time!

By Nicole Sunday, October 11, 2009

 

She is now old enough that she's starting to understand mommy has "boo-boo's" which I've had very mixed feelings about. I hate that she knows what a doctors office is already and that mom takes medicine for her boo-boos. It makes me a little sad that when she gets hurt she puts her ice packs not where HER hurt is, but where she sees me putting ice packs. She wants to mimic everything at this stage. It makes me sad that she has to see mommy on her bad days and we end up staying inside on a beautiful day if I'm in severe pain. It crushes me. On the flip side, I know that no matter where we are playing or how long we play for, she is just happy to be with me.  I know I'm trying my hardest to make her childhood as wonderful as ever, and be as involved as I possibly can be!  She is extremely compassionate when someone gets hurt or she sees something like me stubbing my toe. She wants to kiss boo-boos and rubs my back. At 2 yrs old that is one very sweet gesture. I know I'm raising her with a kind of understanding and compassion for others that perhaps those who aren't around chronic pain may not learn until much later in life. I try to keep as much of it to myself as I can, but obviously when it's just us two together so much she picks up on things. I have one of the sweetest most lovable kids in the world.

 

All in all, I guess I'll never know why I have to deal with this chronic pain at a young age. Will we ever? The choice is how you deal with it. I'm doing my best to go one day at a time...that's all I can do. I have had some life changing experiences lately... a few emergencies and losses, and a scary episode that left me unconscious. I'm told I stopped breathing briefly... and boy does something like that put things into perspective. My first thought when I came to was my little girl. Her smiling face is the best medicine. She keeps me going! Despite the hard pain days, the grief I've had lately, the challenges I face every day... I feel extremely blessed!

 

You may not be able to control your pain, but don't let your pain control you.

Karen Lee Richards, Health Guide
10/16/09 12:38pm

Hi Nicole – It's so good to hear from you and to know that you and your daughter are doing well. I couldn't agree with you more – being a mother is the hardest job there is, but it's also the most rewarding.  My children are all grown now with children of their own.  All of them – children and grandchildren alike – bring me more joy than I can put into words!

 

Your SharePosts and the forum thread you started have been such a blessing to other women with chronic pain who are considering having a baby or are already pregnant.  Whenever I hear from someone in that situation, I always refer them to your posts.  I really do appreciate your willingness to help and encourage them.  My chronic pain problems didn't begin until several years after my children were born, so I can't share firsthand experience with them.  But knowing how much I worried about the health and safety of my babies even without chronic pain and medications to deal with, I can only imagine how frightening it must be for those of you who have those additional complications. 

 

I'm so thankful that you are part of our community here.  I'll look forward to continuing to hear from you anytime you have a minute to share.  – Karen

10/16/09 12:55pm

Smile 

Thank You Karen, for such kind words!

 

Anonymous
Rachsuze
11/ 4/09 7:55pm

Hi Nicole!

 

 

Im in my late thirties, recenlty happily married and recently suffered two miscarriages....Im also a chronic pain sufferer and it's been wearing on me for the last eight years. I think one of my biggest concerns and fears (on top of my age) is going through pregnancy which will add more discomfort to my chronic pain. Can I ask what type of chronic pain you suffer from and what medications helped you in general and while pregnant....Your postings are very inspiring btw!!

 

best,

Rachel 

11/ 4/09 8:14pm

Hi,

I tried to send you a private message but for some reason it's not finding you? Can you send me one??  I'd be happy to talk with you in detail about my experience. What kind of pain do you suffer from? Have you talked to anyone in the medical field about going through your pregnancy with pain? If not, I'd get your doctors on board first and a game plan - so to speak. Find supportive docs that understand you are a chronic pain patient and that pain doesn't just 'go away' when we get pregnant.  

I'm so so sorry about your loss with the miscarriages. I've had one myself, and it's been one of the hardest things I've ever done in my life. I dred the thought of having to do that twice. I feel for you so! Just know you aren't alone on so many levels with all of this... you can have a healthy baby. The pregnancy isn't easy, but it's not impossible. Frankly, it's afterwards that is proving harder for me. Anyhow, let's talk more. I'll look for your message.

 

my best,

nicole

Anonymous
Rachsuze
11/ 4/09 8:06pm

Oh forgot to ask if you can recommend an online support or chat group for women like myself dealing with issues related to chronic pain and pregnancy/motherhood? I too have had the experience that people just sort of 'don't get it' or really grasp the issues we have unless they've walked in our shoes. Thanks so much!

 

best,

Rachel

11/ 4/09 8:20pm

I'm finding there are, but alot of it is specific to the type of pain you have. What type of pain do you suffer from mainly?  There is a thread on this forum here that has other women dealing with this issue that may be helpful. But let me know what kind of pain you have and maybe I'll find some other options for you.

 

My pain isn't visible to anyone just looking at me - so I just recently joined the IDA - www.InvisibleDisabilitiesCommunity.org  and there seems to be many nice people there, although I haven't seen anything about pregnancy yet - but we could certainly look and/or start one!

 

I volunteer on a site specific to TMJ Disorder, and we have a few women there who are pregnant and/or trying to get pregnant that I talk to there.

 

Anyway, yes I think more and more there are women speaking up about this. I felt very alone when i was pregnant and didn't find much, but keep looking!

 

Nicole :)

1/12/10 9:42pm

Hi Nicole,

    I am 11 wks pregnant and I am a nurse, I have been living with pain since my son was born 8yrs ago and it's just gotten worse as the yrs go by.. I have 2 kids, 8 and 18 and now expecting and I was VERY concerned about pain management during pregnancy, they have no idea what it causing the pain at all, I have had every scan known to man and Dr after Dr. I am now with a pain specialist although I have yet to meet him I always see his PA. They took me off all my meds and I really thought I was gonna drop dead from a heart attack right there, just when it was getting a little better I got pregnant. I am happy I am having a baby but it is quickly being over shadowed by all the pain, I also have weakness in my legs which is also getting much worse, so I hurt more, feel more weak and less treatment. I cry alot thinking I can't do this, my husband is very supportive and  my OB well she rocks but I am seeing a high risk OB this week and I am rather looking forward to her input as well. I worked OB for 4yrs and I saw addicts have healthy babies and all the people that people frown on for their activities have healthy babies as well, not that I am saying that drugs can't hurt but I am confident in a controlled medical situation that my baby will be fine and that leaves me that I am worried about, I have so much to complain and cry about but I am also having morning, noon and night sickness so I am gonna close for now and I hope to hear from you and learn more about your journey..            Shannon

1/17/10 2:34pm

Hi Shannon,

 

I've tried to post a few times and it keeps kicking me off! Did you see the high risk OB? How did that go??  I wish this site would work for me right now.. I just wrote you back and now it's gone!! ughh..

 

Anyway.. let me know how it went and we can talk further. Be your own advocate and ask questions, make sure you don't stop until YOU are satisfied with your care. Just b/c you are pregnant, doesn't make your pain go away... there is no reason you should be treated as such.

 

Nicole

1/17/10 7:35pm

Hey Nicole,

   I saw the HR OB it went well, she was rather irritated with my care as far as pain goes, as long as I have been on this regiment she thinks it's not effective as it could be and I am hurting way more than I should be, which she is right I have had to quit work as I am in too much pain and nursing isn't a sit on your butt job and I am so nauseous I just can't do it which is only gonna make it more stressful without $$.. My hubby is supper supportive which is great. I am sick of the bed for sure but I can't handle alot of activity it seems, my legs get so weak and hurt so bad. The worst thing is not having a diagnosis it's just pain with no name. Dr's seem to treat me like an addict and don't care about the pain, I'm 35 so I must be an addict never mind I have been taking lortab for 8yrs and it doesn't work anymore, crazy.. Thanks for writing me back it's nice to have someone who relates to chat with. My pain started about 8 yrs ago after I had my son, it started as lower back pain and moved into my thighs and there it has stayed, getting worse buy the day, weakness began about 3yrs ago, I physically can't run anymore, it's just getting worse. It's a aching, burning, throbbing pain that just never goes away, it gets worse with activity, long hours on feet are the worst. Anyway I gotta get for now, thanks again for your time and have a great day!

                                                                   Shannon

1/17/10 8:58pm

Shannon,

 

Great to hear the OB nurse is on your side and helping you. I assume that means she's going to get you back on some meds to help with the pain?? I hope so. I'm so sorry you have had to give up working, and that the pain is so severe.  Have any of your scans shown anything at all? Some type of sciatic pain maybe? I know that got very bad for me when I was pregnant, and then after. I hope they are able to find a diagnosis for you, as I know some type of "answers" help. I'm still looking for a "fix" for my pain issues too, so you aren't alone there, but having the pain lessened does help in the meantime I know.

 

If you ever want to chat you can email me at Luv2Laugh06 AT sbcglobal DOT net

 

I don't check it as often as I should with all I have going on in my world right now, but I am happy to help you wherever I can with my experiences. Also may be able to pick your brain a bit since you are a nurse and now are working with a high risk OB.

 

I am also young and I know how it feels to be treated like a drug seeker. It's as if you can't possibly be in "THAT" much pain because you are only in your 30's! I've actually been told that.. years ago. I've had my pain my whole life, but never bad enough to require medication until about 8 years ago too.. so I know it's really frustrating and hard enough to navigate through doctors and ignorance and stereotypes, and then on top of it to be pregnant and have all of that. It's not easy! I know you aren't alone though, there are LOTS of women going through this. I get emails like yours all the time!

 

I hope you have a good weekend and rest up. Congrats by the way on your pregnancy!

 

Nicole

3/15/12 5:56pm

Hello, first off my name is Ashley and I read your journey post and it brought tears to my eyes because I finally felt a connection to all the hell I have been going through dealing with chronic pain and being pregnant. My pregnancy was not planned and to be honest my OB had told me my chances of concieving were pretty low and due to many of my medical problems and medications I might be infertile and would need to look into other tests to be sure. Well, suprise came in August 2011 when I found out I was pregnant. However I did not have time to prepare my RA doctor or get a solid team who would stick with me through a pregnancy. So, its been a very painful trial and error situation with managing my pain where the doctor came way down on the pain meds and it has been a fight every month about getting a right dose or medication because I have been in agony. Now, I am 35 weeks and I have to go 4 more weeks but I do not know how I can go on 4 more days with every hour of every day a marathon of pain. I have made a last desperate effort to contact my doctor's and beg them to try other meds but they are uneducated about meds and pregnancy and afraid to do much so I have been suffering as the result. Please could you let me know what are some safe pain medication options that I can present my doctor with so I have something for them to go with and discuss. Please if anyone else has been on a certian pain medicine regimine could you please let me know what it is so I have more options to present my doctor with. Thank you

Ashley

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By Nicole— Last Modified: 03/15/12, First Published: 10/11/09