Monday, February 13, 2012

One day at a time!

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Nicole

Nicole

Sun, October 11, 2009

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Well... I have received many emails over the past two years and I wanted to say a few things. First of all, thank you for the support! There are so many of you that have reached out at just the right time, and it seems like somedays all this pain is worth it if I can help one person get through the day, or better yet - their pregnancy.  I received an email from a woman who read my posts on here, she was 7 weeks pregnant at the time and terrified. We exchanged emails over the course of her pregnancy and became friends. Her chronic pain challenged her daily, her doctors didn't make it easy at times either, but she kept going. Do you really have a choice when you're pregnant anyway? She is someone I admire - you find a new strength you didn't know you had in you when you are forced to deal with something like a pregnancy AND pain at the same time. Nobody quite understands you either, unless they've been there. I was thrilled to be there for her. I'm so happy to say that her baby girl was born in September, healthy, pink, happy, and now thriving!  Mom is adjusting to life with a newborn, and it's women like her that make me so happy I shared my story to begin with!

 

She is one of many like me that have managed their pain (mostly with some medication) and have had healthy babies. I know that choice isn't for everyone, and really depends on your condition and the type of medicine you require. However, there ARE doctors out there that can help. There are strangers that understand, and become friends and support systems. I know it's terrifying, I've been there, but it can be done and many of us are here to help.

 

Second, I continue to receive emails from newly pregnant (and very scared) women that don't know where to turn. I wanted to say I am still here, and still willing to help if I can. The most disturbing thing is when someone tells me their doctor wants them to abort their pregnancy because they have pain. (yes, as awful as that sounds I have indeed heard that from more than one woman). There are very few conditions that warrant this kind of extreme action if you ask me! There ARE medicines you can take while pregnant, the trick is to find a supportive team of doctors to help you through.  Many doctors tend to shy away when a woman with chronic pain becomes pregnant. I think it's simply because they have no experience with it. This is where a doctor should help you find resources and people that DO have experiences with pregnancy and pain. We just need to keep asking questions and pushing until we get the care we deserve. Pregnancy can be scary enough without the added stress of wondering how you will make it through when you are in severe pain. Educate yourself, talk to groups like this, see multiple doctors if you need to, specialists, etc.. You CAN do it! It isn't easy by a longshot... but not impossible!

 

On a personal note, I get asked a lot how my daughter is doing. She is 2.5 and smart, happy, thriving, healthy, etc.. Since the moment she was born she hasn't had ANY unusual behavior or side effects from my chronic pain during pregnancy. A few months after she was born I left my career (put it on hold I say) and decided to stay home with her....and while that is very challenging - caring for a very active toddler while trying to manage my pain - I am extremely blessed that she is so amazing. I love watching her grow and try new things, teaching her ABC's and 123's.  Being a mom is by far the HARDEST job I've ever had. No paycheck, no guaranteed thank you's every day or promotions for your hard work, on call 24 hours a day, no sick days, etc. It is however, the BEST job in the world. I wouldn't trade it for anything.

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

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