gail323

I am 11 years out from a double mastectomy. The first few months, I spent a lot of time in the recliner because I was able to get myself positioned more comfortably. I agree with the others - find some small pillows and make yourself comfortable. It does get better.

Well, I'm coming at this from two separate ends of the spectrum. I am a nurse, retired now because of the cancer treatment that I received, but worked for years with fibromyalgia. Because I am retired, I do not usually end up putting my body into the work environment that would trigger the severe pain. General achiness is still there certainly but I take nothing more than aleve and tylenol to get through my day. I am not depressed - not now, not ever, even during the worst of the chemo treatments. I am a very upbeat, positive thinking individual... That being said, fibro is real. And it doesn't happen just to people as a PTSD component - nothing would have triggered it in my life. Not saying that it doesn't happen to some. I was never a drug seeker - the number of times I have been on pain medication other than the OTC stuff were related to surgery or the side effects of chemo. I think part of the problem is that those of us in health care rarely see someone diagnosed with fibro who is attempting to live the best life they can. In health care, we frequently see those that have tried to cope and ended up seeing doctor after doctor trying to figure out what is wrong with them... and looking for that magic pill that will allow them to get back to some semblance of a normal life... and they give up after a while, and look for anything that will take the pain away. Discouraging - yep. Depressing - most certainly when there way of life is controlled by the amount of pain they are having. Knowing that I have something "more physical" planned for one day means that I will usually take it easier the day or two before. Or if I happen to end up being more physically active one day - helping my husband move furniture or some other such thing - then he knows that the next couple days will involve me trying to get the pain under control. And I know others that deal with life the same way - women and men who were energetic, athletic individuals who have had to give up some of the activities that they dearly loved when they were diagnosed. I really hope that some day someone will figure out why we seem to be so hypersensitive to painful stimuli and come up with a game plan... but until then, can I ask my fellow nurses to just please be sensitive. Not all people who deal with pain are drug seekers. Most of the ones that I know would love to be able to get back to their before fibro activity level. Yes, some seem to thrive on the attention they get, but I don't know that it would be any different with any other "invisible" disease. And if the only time you get attention is when you are complaining... well, if you are stuck in your house because of pain and no one pays any attention to you, you can see how the cycle will just keep repeating itself. This got much longer than I planned but I'm not going to go back and edit it. Maybe there is something in this mess that will help someone else. Pain is subjective. It isn't something that you can measure and we have to count on what our patients tell us and then try to bring them back to as close to normal as we can. That's our job...

Thanks, Leoduola, for the information you provided on the sanitarium in Kentucky. My Mom and several members of her family were diagnosed with tuberculosis around 1940 and Mom spent a couple of years in a sanitarium in Minnesota. She rarely talked about it but as she got older, she said that she always scared doctors when they saw her for the first time because they "removed her lung". When she passed away 3 1/2 years ago, it was because her remaining lung was just plain worn out - she lived for around 70 years after her bout with tuberculosis.

I am another one that had a miscarriage - between the births of my two sons. Even though it happened 32 years ago, I often think of that baby and wonder what it's life would have added to our family. I remember walking into church the Sunday after I lost the baby and having an older woman walk up to me, wrap her arms around me and say, "I've been there too - and there will be days when you think you are going crazy." Those were the best words that I could hear at the time - to realize that I was not alone and someone understood what I was going through. At the time, I wish that someone had told me to name my baby, to do something to celebrate his or her short life, to create or purchase something that would have been a remembrance... but that long ago, people would say they were sorry but then because that baby was never real to anyone but me and my husband, they would forget. I agree with others that suggest some sort of support group whether it is online or in person. She needs to know that she is not alone in her grief. There is a website that I recommend to others that contains the writings of many women who have dealt with miscarriage, stillbirth, SIDS, etc. It may be hard to go there at first but it is a place where she can read the many stories of people who have dealt with similar things. And of course, if the grief reaction seems unusual and she is having trouble coping with it, she needs to see a doctor or a counselor to help her get through it. Gail

My mother-in-law was a resident of the nursing home where I worked at the time - she had Alzheimers. She told me that she had never had a doll of her own as a child, so that was what I bought for her. It brought her great comfort and I often found her sitting in her rocking chair, rocking her baby.

In March, I'm celebrating my 5th year since diagnosis of breast cancer. I worked in a clinic at the time and they tried to work with me. I did my chemo on Monday because my church family is also one of my biggest support groups and I hated to miss out on being with them. I was usually unable to work during that week - I was exhausted. I would work half days during the weeks between treatments. by the time I had gotten halfway through treatment, I had run out of family medical leave act time and sick time. They told me that unless I was able to work full time, they did not have a job available for me. I know I could have fought it, but decided that fighting for my health was more important. They have hired me back on a casual basis, but I don't get many hours at all. It's been ok because I've been able to help out my parents. Financially, well, you know how it is... As they always say, YMMV. Some people that I know were able to seemingly breeze right through treatment. Know that you are in my prayers as you continue this journey. You can get in touch with me if you would like. Gail in MN

Read article in its entirety: http://www.startribune.com/lifestyle/health/14024831.html

First of all, I know that you cannot give me medical advice and I'm not expecting it. Just trying to come up with some ideas. My 83 year old father is having a hard time - doctors keep changing and increasing his medication and his blood pressure is still high... and he's having problems dealing with the side effects. Dad has a history of triple bypass more than 10 years ago and has had hypertension well controlled by low dose medication. He also has parkinsons disease and type 2 diabetes. Weight is well controlled. Currently, he is taking Atenolol 50 mg bid, Losartan 50 mg bid and Catapres TTS 0.1 every week for his blood pressure. He is also on Flurinef for orthostatic hypotension issues. Additional meds include Simvastatin, Metformin, Omeprazole, Fluoxetine, Carbidopa/Levodopa, and Gabapentin. well, you get the picture. Blood pressures are celebrated when they are less than 200/100. Doctor says that we are having problems controlling it because we are dealing the way diabetics and Parkinson's disease are allowing his medication to work. Can you guys see anything that I'm not seeing from so close up. His doctor is good about taking suggestions and we are looking at quality of life, not quantity. I'm an RN with 34 years of experience and know full well that nurses can often see things that doctors can't. I'm not going to make changes without the doctor's ok - just thought with all the years of experience we have here on this group, that we might be able to come up with something. A little note of interest - I live 3 hours away and Dad and Mom definitely feel better when I'm there. Gail

Four years ago in March, I was diagnosed with breast cancer, had a bilateral mastectomy (my choice), underwent 8 chemo treatments - 4 Adriamycin/Cytoxin and 4 Taxol - every 3 weeks. I would have my chemo on Monday and it would be the next week before I would feel up to trying to work - it is an unusual type of fatigue that goes along with chemo. I would work half days through the next two weeks and then be down again. By the time I had finished my first four treatments, I had used up what fmla and sick time that I had available. Working in a clinic meant that I either worked full time or could resign. It was probably one of the hardest things that I have ever done and I could probably have fought for my job - but decided that fighting for my life and health was more important. Then it was time for my radiation. It was a 30 mile one way trip to the radiation clinic so it would have been difficult to work and make it to those treatments. Can you do it? Many people are able to do so - it all depends on how well you tolerate the treatments. I am still not "back to work" but my parents are needing me so much right now so spend time with them every several weeks. I would not be able to do it if I was working. So far, I'm doing well - get my labs drawn again next month and see my pcp. See the oncologist once a year. Gail in MN

Happened to my long and lanky son about 4 years ago - after he had symptoms a second time, they did some testing for Marfans. It was negative. I was told then that it wasn't all that unusual among the tall and skinny.

I was started on Neurontin for problems with chemo induced neuropathy (from Taxol) and I only take 100 mg at bedtime. Yes, it does help and surprisingly, has helped with the hot flashes from the Tamoxifen too. I still deal with some neuropathy - but at least I'm able to sleep at night and that makes all the difference.

I was making rounds with one of our surgeons and we had stopped to see a 90 something female patient - she'd had her surgery and was starting to feel better... I stayed in the room after the surgeon left - did I mention that he was very good looking? After he closed the door, I sat down to make sure she had understood all of her instructions, but I could tell she wasn't really listening to me... and then she said, "I'd let him leave his shoes under my bed any night." and grinned like a school girl...

i agree - i've got epocrates on my palm and would not do without it.