View Full Version : Just plain scared
07-10-2005, 08:25 PM
The Lupus is not the problem, at least the worst problem. I was diagnosed at 18, 22 yrs ago. I recently had a chest CT to determine scared tissue as a result of pleurisy. They found Lymphnodes that are larger than the norm and more of them than the norm. This could all be the result of the immunosuppresent drug, cellcept. I am waiting now for the radiologist to read an old CT to see the progress of the lymphnodes. The possibility of lymphoma is terrifying with three children 14, 11 and 5.
I just wanted to tell someone how scared I am, my mom is not an option, she nags a lot. My DH is the very annoying voice of reason ie, "Don't get upset until we know for sure".
07-11-2005, 04:53 AM
Aren't those voices of reason just plain anoying sometimes? While your dear husband might be right, you're not ready to hear that, you want a hug and a shoulder to lean on.
All I can offer from a distance is a virtual hug, my thoughts, a note to say that I hope you will learn the diagnosis very soon, and that it will be OK.
There's a prayer I learned years ago that has stayed with me all that time. A piano teacher gave me the prayer on a bookmark. While I no longer consider myself a Roman Catholic, this prayer still holds comfort for me. I hope it will for you as well.
St. Theresa's Bookmark
Let nothing disturb thee
Nothing Afright thee
All things are passing
God never changeth
Attaineth to all things
Whom God posseth
In nothing is wanting
Alone God Sufficeth.
May you find some peace today, Chocolate/Karen, now ask that husband of yours for a warm hug.
07-14-2005, 01:01 PM
Karen, please post your results and know that there are people reading this forum and in your life that feel for you and wish you the best. I am not religious but, having been through cancer and HepC treatment and now lupus and the single mother of a small boy, can attest: Prayer works! Ask people to pray for you no matter what the religion.
Meanwhile, everyone knows that you cannot change what is, only your reaction to it. Perhaps the support you are receiving from this board and other places will help you and cushion your reaction. I sincerely hope so as this type of support helped me.
07-18-2005, 04:42 PM
Hi Chocolate :lol:
I chose not to give you a bunch of information about Lymphoma because I know that is not what you need right now. I want to give you my support and, as best I can, a hand to hold and an ear to listen. We are all here to support you and to provide you with whatever you may need from us.
It is quite all right for you to be afraid, to scream your fears as loud and as often as you can!! There is no such thing as being unreasonable when you are dealing with an illness!
Please let us know the results of your test. I know that there are so many different types of lymphoma and also so many new treatments. Remember, we are here for you. Let me know if you would like me to research anything at all, I will be happy to do that when you feel you are ready.
In the meantime, You Are Not Alone!!
Wishing You Much Peace and Many Blessings
08-14-2005, 10:47 AM
I got the news back from a PET CT and there is no sign of lymphoma, they have even decided against a biopsy. Just another scan in 6 months. This is a major relief for everyone in the family.
Thanks for the good thoughts,
Karen, I'm new here, but went straight to your post. I am so glad the biopsy was normal. Celebrate! The number of tests we endure with this disease is unbelievable; how wonderful that such a scary possibility disolved into the ether.
I've had a lot of pleurisy myself, and if you wouldn't mind, could you be kind enough to explain how this happened to you? Did you experience the pleurisy as I do--pain in the lung girdle of muscles that feels like you have pneumonia or severe bronchitis? Did you also have internal inflammation that you had to treat with inhalers? I'm sorry to bug you with questions when it's probably the last thing you want to think about, but all of us here need not just support, but as much information as we can get, so I am presuming on your good will (but not offensively, I hope).
On the same note, I have found that the doctors I see know very little about this disease, how it works, and are unwilling to listen. How did you get your doc to treat you seriously? What exactly did they biopsy? Where did the scar tissue form? I'm sorry to pepper you with questions, but pleurisy has been a pretty constant problem for me, and I would like to hear from you (not my doctor) about what's happened. I thank you in advance.
You can email me to talk privately, if you prefer.
08-16-2005, 10:14 AM
That is, indeed, wonderful news! I am sure that it was a great relief to both you and your family.
I absolutely love to get good news, you have brightened my day :lol:
Remember, we are here for you whenever you need us!!
Peace and Blessings
09-14-2005, 08:16 PM
Well, I will try to answer your questions. Sorry it has taken me so long to get back to you.
The pleurisy came about a few years ago. I thought that I was having heart problems, because of family history. The symptoms were chest pain and shortness of breath. The scare tissue would have been from the on damage from the pleurisy, which was luckily minimal. I was never put on any inhalers, my treatment was always prednisone.
I have been extremely lucky regarding doctors. When I lived in Florida, 22 years ago, I had a doctor that recognized the symptoms, had the appropriate tests, and comfirmed a diagnosis. When I moved to Indiana, I had a little problem finding a doctor, so I went to Chicago. I have recently switched to a wonderful new rheumy in the area.
I really don't mind answering questions as long as you don't mind waiting for the answers.
Let me know if there is anything other info I can give you.