Re: Need a Listening Ear...Marla and a Question for Anyone

[Guest guest]

Hi Marla,

Yes!...I feel your positive thoughts!...and thank you very much for your response!!! ...

I am feeling much better mentally today than I have for the last number of days. I had been fighting back the tears and emotions for too long ... well, yesterday, the waterworks were turned on -- ALL DAY LONG! ... I opened my eyes in the morning, got up, put my feet on the floor ... and the tears started from that moment on. My poor husband was thinking he did something wrong ... which could not have been further from the truth ... he is so sweet ... there is nothing he can't or won't do for me ... I still can't believe he thought he did something! ... men! ... when they do do something, they don't think they did ... when they don't do something, they think they did!

Anyway, when Joe asked me why I was crying, I told him that I just can't take the pain any more ... and that I try to hide it, but just couldn't any more ... and I didn't want him to know how much pain I was in ... and how I was feeling about myself ... etc., etc., etc. He said, "Joan, you are in pain all the time ... you might think you are hiding it, but it is written all over your face, so just tell me that is what is wrong! ... why is today different than any other day?" ... then, he proceeded to tell me that he has seen this coming for a while and that I had to pull myself out of this depression (it's not the first time he has seen it) ... I cried more and said, "I want to, but can't!" ... "I can handle a few months of pain and being helpless, but I reached the breaking point!" ... I went on with how he does so much for me and is so good to me and that I feel I add nothing to his life anymore, etc., etc., etc. ... it was that type of conversation. He was shocked I even thought that. He proceeded to tell me all that I do for him to make him happy -- how I make him laugh without even trying to be funny, how much he enjoys my company even if we aren't doing anything ... how much he enjoys my nutty sense of humor ... and how much he loves and needs me ... said it makes him feel good to be able to do things for me ... and the only reason he would ever stop doing things for me is if I were feeling good and wanted to do things for myself.

Then, there I went being mad at myself for allowing myself to reach that point (again) and upsetting my Joe (again), too ...

I saw my GP today, too ... I told him he should be very happy my appt. was not yesterday! (yes, my GP has been the recipient of my waterworks on occasion, also). As far as my visit with him ... the thoracic MRI showed "something", but the radiologist wants a "plain old" x-ray to see the bones further. He told me that my neuro's reports to him are not "optimistic" -- which I find ironic since my neuro doesn't really show much of any expression to me at all. My doctor also told me that I have to try the higher doses of the neurontin (2400-3600 mg's) the neuro wants me on ... he said the 900-1800 mg's I'm taking a day are just not enough for the nerve endings. He also told me I had to see the dermatologist again ... that my lesions are too out of control. I asked him about an immunologist. He said there are none around this area, but there was a good allergist who has been making some progress in immunology. I reminded him that if it were the last allergist I saw many years ago who "found my lesions exciting" and who put me on prednisone (which I had not been diagnosed with sarc by that point and did not know what prednisone did) ...anyway, if it was that doctor who did not bother to wean me off the steroids and how my lesions came back with vengeance ... no way would I see him again. My GP indicated that it was a different doctor he wanted me to see, but he wants me to wait until I see my dermatologist on 9/29. He also wants me to see my pulm. doc ... which also is on 9/29. I believe he is trying to get several specialists to all agree that prednisone is the answer and that if all were in agreement, that I would give in and take them. I told him I joined this on-line group and that I've learned prednisone is not the answer, but I was still confused as to what was. My doctor then told me, "we have to halt your immune system now ... Joan, you are well aware that all of your symptoms are out of control ... it's got to be stopped."

Here is my question for anyone ... So gang ... what am I supposed to do when all the specialists recommend prednisone?!?! ... which I know they will. If I fight them on it without presenting any alternatives, they are going to fight me ...

My neuro also told my doctor he put me back on the Lortab. I then told my GP that the neuro prescribed 1 3x/day and that it wasn't enough. My GP then changed it from the 5/325 dose to 7.5/500 dose and that I could take 4 a day ... as long as I took absolutely nothing else with acetaminophen.

So ... not an all-round, good-news visit, and not thrilled about the narcotic need again, but at least I am not in the "agonizing" pain at the moment and do not have to fear the mornings when my feet hit the floor for a while...I am very relieved to get a temporary break.

Joan