And Yet Another Blog Bites The Dust: Below are the Blog entries from Teen Fibro-
teen fibro is A blog I started as my daughter was fighting the self-realization that she has fibro and dealing with the reality of life with it. She's only a teenager for 19 more months and is doing amazingly well. as a result, I am so irregular in my posting on teen fibro that I think it's better to quietly close the blog, but not delete it...maybe some teenager, some time, some where, will be searching the web for answers and find some help in its words. I simply will not be contributing on a regular (if ever) basis any longer. My best wishes to those who suffer from fibro's painful symptoms and my Greatest hope for them as well. Love, Jean -
SATURDAY, DECEMBER 5, 2009
The drugs that fibro patients take are critical to their ability to live a less painful day-to-day life, but those same drugs can be harmful to a growing fetus.
This is why it's so important for fibro patients to understand that their ability to have a child is not cancelled out by their fibromyalgia, but the life of an unplanned child might be cancelled out by the drugs they are taking IF they don't plan ahead and work with their doctors as they begin to plan a family.
Medications are not something to guess about. Your doctor can tell you what, when and when not, to take them, ESPECIALLY when you are wanting to get pregnant.
Like everything in life, and life everything in a fibro patient's life, planning makes all the difference.
If you want to get pregnant, talk to your doctor first. Most likely there will be some changes in your medications, whether it's a change in prescription or dosage - it will make the environment your baby will be living in for 9 months much more conducive to nurturing a healthy baby.
NO drugs may not be the answer, so please don't self-prescribe or self-diagnose.
Keep your doctor in the loop if you are sexually active, whether single or married, and whether you are planning a child or not.
Your health is just as important as the baby's health. Don't think one can be sacrificed for the other.
It's not the fibro that will cause problems in a pregnancy, it's the use of necessary prescribed drugs without conversation with your doctor about appropriate adjustments when you are carrying a child.
SATURDAY, OCTOBER 10, 2009
Life can take twists and turns that were definitely not shown on the road map you had been following.
I suppose that's how it is when someone is diagnosed with any unexpected condition, including fibromyalgia. Words may suddenly fail you.
And when that diagnosis and sudden fork in your chosen road appears, the inaccurate road map you had been following isn't going to be of much help. In a nanosecond you feel lost. Suddenly it seems as if you are on your own, even if someone is sitting right next to you in the passenger seat, and only you can turn the steering wheel, only you can apply the brakes, only you can accelerate out of control, only you will determine where to go from here.
So whether at a loss for words or simply lost, you are in the driver's seat.
Yogi Berra once said, "When you come to a fork in the road, take it." Since those who are diagnosed with fibromyalgia have no choice in the matter, Yogi's advice is right on target.
Don't let a fork in your mapped out path derail you completely. Take the fork and remap your gameplan from a new starting point. You don't have to lose time and progress, but you do have to reprioritize.
Suddenly the destination seems further away and the road to get there is now a detour, but the the important thing is that you are still heading toward the same destination. You are still you.
When words fail you, rethink and try another tact. When plans fail you, regroup and try another path.
And even from the driver's seat, you can listen. Ignore irritating backseat drivers, but listen to your front seat passengers -those who care about you, listen to those who have been there before, listen to those who are familiar with your circumstances. No, they cannot and do not feel and know what you do, but they can often be of help. They can provide alternatives, suggest new directions, even give you a sample map to follow.
It's still your life. It's still your reality. It's still your detour. You may want to slam your foot down on that accelerator and just fly on by as if nothin has changed. But that isn't going to help and sooner or later you will run out of gas.
Racing ahead is not the best answer, you need to take a pit stop and examine the critical areas of your life that may be affected by this unexpected change. You need to assess your friends and family for those who can be of help. You need to remember that you may be in the driver's seat, but you aren't really alone.
We are all here to support you, whether it's fibromyalgia or some other unexpected turn in the road. We are just down the street, or around the corner, or at the other end of a phone call - so be careful and don't drive right by the support that is so close that you might not see it; take your foot off the accelorator, brake slowly and use us as your rest stop. Let us help where we can, even if all you need is a peaceful place in the shade to think or a cool drink.
You can do this, I know you can. And we're right there behind you. Just check your rearview mirror.
WEDNESDAY, SEPTEMBER 16, 2009
The good news is that research shows that babies born to women with fibromyalgia are typically healthy, full-term, and of a good birth weight. However, from conception to birth and even the first 90 days following birth can be a challenge for the fibromyalgia Mom, according to some research. Other research showed that the fibro symptoms in pregnant Mom’s tend to lessen or even go away altogether, possibly due to the ovarian hormone relaxin which increases to 10X the normal levels when women are pregnant.
Although pregnancy can eliminate fibro symptoms for some, most women will experience the return of their pre-pregnancy fibro symptoms after giving birth and will experience specific symptoms such as muscle pain when they breastfeed.
Simple precautions that should be recommended for any woman who is breast feeding, not just fibro sufferers, should be taken: find a supportive and comfortable chair, prop your arm on a pillow, make certain the baby is supported and that you don’t have to hold all of their weight, be careful about your own position and posture, find a place that is as tranquil as possible to nurse.
The issue of meds is also of concern, not all medications are safe to continue during pregnancy, but some are. Make certain you talk to your doctor prior to getting pregnant or immediately upon becoming pregnant about your meds.
And of course, eat smart and healthy, keep moving and work out moderately, don’t overdo anything, sleep enough, sit enough, walk enough, eat enough, take appropriate meds, and enjoy your pregnancy.
The best news is that you can stop worrying, because fibromyalgia should have no negative effect on your baby. The challenge is whether your fibro-body can manage a pregnancy. The question is, are YOU up to it?
There’s a baby at the end of these 9 months, what other time will you have such a reward at the end of what may include some very uncomfortable times?
So enjoy, be smart, plan ahead and congratulations!
SATURDAY, SEPTEMBER 5, 2009
Here is Tricia's note in part:
I just read a FDA warning about certain medications that are sometimes used to treat fibromyalgia and cause an increased risk of lymphoma and other cancers associated with the use of these drugs in children and adolescents. It's Tumor Necrosis Factor (TNF) Blockers and are marketed as Remicade, Enbrel, Humira, Cimzia, and Simponi.
Thank you Tricia!
WEDNESDAY, SEPTEMBER 2, 2009
The top picture is of my daughter Kalen with her niece, Kayla - a miniature Kalen as you can see. Kalen suffers from the collective challenges of fibro every moment, just as so many do. But she also chooses to celebrate life...and savor the good moments. She is in college. She is dating. She rides her bike. She eats smart and rests well. She has her bad days, but she lives for the good days. She is brave and beautiful and she is in pain; she has fibromyalgia.
I know that you can do this, and together we can increase awareness and improve treatment of fibromyalgia.
THURSDAY, AUGUST 27, 2009