All of this was for NOTHING!!

I am just so profoundly sad right now. I had this surgery b/c of my MS. I weighed 270 lbs and I could barely move. I know I've shared with you all about my recurrent health problems. Today, I found out that I will have to be on steroids for the rest of my life. And all of the weight will probably come back. I have been diagnosed with osteoarthritis, rheumatoid arthritis, and fibromyalgia. My joints are already showing deformites, particularly my hands. (I was diagnosed with MS about 8 years ago) The first rheumatologist I saw kind of acted like the R.A. was no big deal. He started me on chemo therapy treatments and said that he thought my illness progression would be no big deal. WRONG! I continued to get worse, and my PCP was getting quite concerned b/c I was still in so much pain and so fatigued. He was thinking fibroymalgia, so he sent me for a second opinion. I saw a really TERRIFIC rheumatologist today. He truly was CARING, compassionate, and wonderful. But he had bad news for me. My joint deformitites are getting pretty bad considering I'm just now 30 years old. I have swelling in pretty much EVERY SINGLE ONE of my joints from to fingers to my toes. I have primary osteoarthritis and secondary fibromyalgia. The fibro is secondary to the rheumatoid arthritis. There were also some neurological abnormalities in the exam (such as my left pupil doesn't react to light and my left foot had a positive babinski, which indicates a neurological problem with the MS). Anyway, I am starting a new drug called cymbalta this month. Next month, we will either up the chemo drugs or begin long term steroid use (depending on how I fare). He said I probably will gain weight - maybe all of it. BUT, it's either weight gain or crippling arthritis. He'd rather me gain weight from steroids than to end up crippled from these aggressive forms of arthritis. I am soooo sad to know that I more than likely had this surgery for NOTHING! The steroids will make me blow up like a balloon. And I will be on them for the rest of my life. The rheumatologist said that he felt my outlook was incredible, and he could not believe that I didn't show more "psychological bruising" than I do b/c of all of this. He said that I certainly had more than my fair share of illness and disease. I guess if there is one good thing- he did say that he will help me get social security disability. He said that I am certainly entitled to it with as bad as my health is, and that it is made for people like me whose health stops them from working to support their families. His support did make me feel better. But to be honest, I think this JUST SUCKS!!!! I think this is terrible, and I'm so angry about it. I was finally starting to sink into the smaller me. I've even gotten rid of all my larger clothes - knowing that this was permanent. Permanent weight loss?? I guess not - at least not for those who will be popping steroids for the rest of their lives. Also, there is really no good treatment for fibro. We can treat the MS and the RA (and the osteoarthritis), but not for the fibro. I just have to learn to live with my whole body hurting and the indescribable fatigue. Anyway, thanks for letting me vent. Hopefully, I'll feel better about this in the morning, but right now, I'm pretty convinced that life just sucks

Hey Les, I am sooo sorry to hear about your troubles. I wish I could make it better for you. I am glad the dr. was caring. My aunt has RA and so I know it can be debilitating (sp?). She's on steroids too and has done chemo as well, but she hasn't gained more than 20 pounds, if even that, since begining treatment years ago. So, maybe there's hope?!! I just want you to know I am thinking of you and placing you in my prayers. Love & Support, Katie

Thanks Katie. Today is a whole new day, and I am determined to not let this get the better of me. I am very glad to hear that your aunt only gained 20 lbs. Maybe I can be so lucky. The rheumatologist said we'd start out on a low dose of steroids, but it would have to be increased over the next few years. If I only gained 20 pounds, then I would only be at 210. That's still better than 270. anyway, thanks for the prayers and support. Les

Leslie - I am SO profoundly sorry that you are going through these challenges in your life. You're right, it totally sucks and my heart is breaking for you. BUT, please don't think your surgery and fantastic weight loss success has been in vain! If you went on steroids and gained weight at 270 pounds you would have been far worse off than gaining weight after you'd already lost a bunch, right? Furthermore, you will eat less for the rest of your life and that has to be a good thing overall. It will most likely help you control your weight somewhat won't it? Leslie - you have so much strength, you are a remarkable woman! Hearing about your challenges has humbled me tremendously. I get strength from you and hopefully you have and will continue to get some strength from us. Love, Sandy

***** Leslie - you have so much strength, you are a remarkable woman! Hearing about your challenges has humbled me tremendously. I get strength from you and hopefully you have and will continue to get some strength from us. Love, Sandy**** Sandy, you've literally brought me to tears. Thank you so much for your very kind words. Sometimes, I feel so overwhelmed, and I feel like I am falling apart. I feel like I am weak and just falling to pieces. And I wonder "why me". But then I remember that *I* shape my own future, and *I* am the one to decide how I live my life - disease or not. And you're right. It is better to gain the weight from 189 lbs than to gain it starting at 270. But I guess I'll never know what it's like to hit the century mark, but hey, that's okay. At least now, I will most likely be mobile for longer, and that's a good thing. Last night, I was really regretting the surgery. That's b/c I wanted to BINGE eat and drown my sorrows in food. I wanted to devour a cheesecake out of grief. If nothing else, this surgery has taught me how to deal with grief and sadness WITHOUT eating those feelings away (although I did have a single twinkie last night. And it was worth it! LOL LOL ) But today is a whole new day, and I am feeling better about everything. I do get strength from everyone on this board. We all have challenges in our lives - difficulties and obstacles we must overcome. And it's important that *I* remember that, so I don't drown in self-pity. ;) I still think this news sucks. But there ARE definite plus sides. I have a GREAT doctor. And he is very concerned about my well being, and that is very important. (When I was first being diagnosed with MS 8 years ago, I was told it was all in my head! What a moron neurologist. Now, my MS neurologist is one of the top MS specialists in the entire nation. He works with the National Multiple Sclerosis Society). Anyway, I am fortunate to have a sharp doctor that knew what to look for. My joints feel inflammed, but when I look at them, they just look like they always do to me. My rheumatologist could feel of them and feel the swollenness and my right elbow was even "warm" to the touch from the inflammation. So, my wonderful doctor is a plus. I know that I will most likely get approved for social security disability now, and that's another plus. Some people are never approved, despite being unable to work. And I can fully concentrate on my health and raising my girls - that's another plus. Speaking of my children, I need to take them both to a pediatric rheumatologist. My doctor said that the average person's chances of getting these forms of arthritis (that I have) are 1 in 100,000. But b/c of me, my girls' chances are 1 in 250. He said that they should be checked out. THAT makes me sad. My poor girls. I hope and pray they never have to know this kind of pain. Anyway, Sandy, your post has truly helped me. It inspired me to find my inner strength and continue to believe in myself. I see myself as weak and falling to pieces, but to know that someone else sees me as strong empowers me. It reminds me that I have more strength than even I realize. Thank you so much ((( HUGS ))) Leslie

((((LESLIE))))) major hugs sent your way! I'm sorry you had to receive such difficult news about your health like this, but I'm encouraged that you've found positive points to lift your spirits this morning. As far as the steroids, my mom was on tons of them and she did swell up some at first, but it settled down a lot after the initial reaction. She did Atkins and was able to lose a lot of weight even while on steroids. Recently, they've been able to taper off her dosage a bit over time and that has helped, but she will be taking these drugs for the rest of her life. (she is a transplant patient) The pain you are dealing with sucks, and I just hope they can make advances with this stuff that can help you soon. You've been so supportive to all of us here each time we've faced health issues and I appreciate that so much. I hope we can return the favor to you. I'm so glad you are with a great doctor now, that will make all the difference for you. Just remember that we are here for you if you ever need to vent or talk. I hope the Social Security benefits can ease your stress level a bit and you can focus on your health and your kids. God bless you Love, Sue

Thanks Sue. ((( HUGS ))) Do you know how high of a dosage your mom takes? I am curious. The doc said next month we'd start out at 5mg everyday, and then we'd increase it as necessary. He did seem really concerned about getting my pain under control.

Leslie, I'll find out for you. ~Sue

Leslie- Sorry to hear what you are going through- can't add alot to what has already been said- just remember we are here for you. Hang in there- Victoria

Thanks Victoria. I appreciate your support.