Here I am, another sleepless night. I like to blame it on all of the anti-convulsants I am on for my trigeminal neuralgia. A facial pain disorder which started about six months ago. The pain is so bad that at times I end up in the ER begging for pain relief. My face hurts so bad that I can’t function. This is the newest ailment in my bag of conditions. It all started with endometriosis when I was a teenager then, osteoarthritis, celiac disease and fibromyalgia. Then right after I got married, at age 30 I developed thyroid cancer. At the same time I found out I had hashimotos thyroiditis, an autoimmune disease destroying my thyroid. I had my thyroid removed and went through radioactive iodine treatment. That was a couple years ago and my scans for the disease have been clean ever since. I struggle everyday with pain from the arthritis, the fibromyalgia and the trigeminal neuralgia. I have to keep gluten out of my diet for the celiac disease and still have a lot of bowel problems related to it. I take a lot of medications. Not only for my physical ailments but for mental health. I was diagnosed with bipolar II disorder about 6 years ago. Every day is a battle. But I make it through. My husband is the most supportive person I have ever met. He has spina bifida and uses a wheelchair to get around. We understand each other. And accept each other. I have built up a support system of friends and family and medical professionals. And I always keep on top of things. If I don’t feel right about something the doctor says or prescribes, I talk to them about it or I go for a second opinion. I am always my own advocate. You have to be when it comes to your health. You have to take care of yourself. Things are complicated. Surround yourself with medical professionals who get the whole picture. And don’t feel like you are stuck with a particular doctor just because they are working for you. You can hire someone you feel comfortable with.
One way I cope with my conditions is I have become involved in local support groups. These help a ton. I even served as support group leader of my local endometriosis support group back in college in Nebraska for several years. It is very rewarding to help others, to share your story. To know you are not alone.
Rachel
Kentucky
Submitted 3-20-11
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
Rachel,
This is the first time I have seen ANYTHING where someone else has Trigeminal Neuralgia! I have TN, Fibromyalgia and Levido Reticularis. I am on a lot of medications, but seeing what you have been diagnosed with, makes me think that I am on nothing, compared to you. You and your husband are PROOF that relationships can make it through anything. You give me hope that there is someone out there for me willing to take on the troubles and tasks that come with FM, TN and Levido. I wish you the best and I definately feel what you are feeling. I wish I could make your pain stop just as much as I could make mine.
Happy Thoughts
Erica
I really hope you recover as it appears you have the best family and friends. Having a partner who supports you and friends who are there for you in difficult times, that’s what I have been missing. Even my fight is with thyroid only, I wish I had greater support network.
Wish you all the best.