Update on Medical Stuff
August 12th, 2009 by (Michy)
Okay, some of you already read parts of this and others haven’t, and I forgot who I updated and who I haven’t, so I’m just putting it all here on my blog so everyone can see it!
First, I want to thank you all for your support during this waiting game we just played. It helped make the wait easier knowing everyone was praying and thinking of me. Thank you to you all for that.
The good news is: it is apparently NOT breast cancer.
The first place that we went to could no accommodate the exam the doctor requested, and I’m currently really pissed at them and might actually be filing a complaint with the ADA group about them (American’s with Disabilities). I haven’t decided yet, but they embarrassed me and made me feel bad during what was already a difficult time. In case I pursue legal issues with them, I can’t really explain how or why they did this, but just know, I am not pleased at all with how they handled things.
My friend, Lynn, then took me to the place where she’d had her mammogram earlier that year. They were able to see me the same day, mostly due to Lynn’s insistence, but they did require I have a mammogram done as well as the ultrasonography. The good news was the mammogram came back completely normal and clear. Yay!
Still, I was there for Inflammatory Breast Cancer screening, and most women with IBC do have normal mammograms. So the sonogram was then performed. According to the sonogram, there is no thickening of the skin or any obstructions they can find. They did, however, find very large lymph nodes, and although she said they appeared quite large, she said they otherwise looked normal. Still, there has to be a reason for the enlarged lymph nodes, and while she said the Lupus could definitely be a cause for that, I do need to follow up with my doc to have her look at the films and such and see why the lymph nodes were enlarged so much. They were painful also, and let me tell you, after her pushing around on them with the wand and after the other lady smashing my boobies trying to get clear pics of my large breasts, I was rather sore afterward!
So…again, it doesn’t appear to be IBC either, although they too didn’t seem to know a whole lot about Inflammatory Breast Cancer, so in a way, I’m really glad I’m writing this up and hope it will lead other women to really pay attention to this disease, since so many in the medical field still don’t really look for it. They did say, however, that they know the pain is real, and that it shouldn’t be ignored, and if the symptoms get worse, it should be monitored and I may need to be retested again sooner than a year.
Lynn has been a blessing to me…. it’s good to have a Buffy! I think everyone should go out and get themselves a Buffy! No, you cannot have mine! I plan to keep her! (Buffy – BFF+)
It’s funny, because everywhere we went, they keep asking if we are mother and daughter or sisters. Lynn is a little bit older than me, but not enough she could even remotely come close to being my mother. Still, I spent all day yesterday calling her, “Mom” just for kicks.
I love you, mom!
We finally gave up and just started introducing her as my sister.
I suppose if it comes down to it, and all they can tell me is that all of this is JUST the Lupus, I’ll take it, but then start properly treating the damned lupus, with the steroids and the other stuff that we KNOW helps. I don’t care if I balloon up to 5000 pounds from the steroids if they take the pain away! I don’t even mind being bitchy (like anyone would notice) if the steroids take the pain away!
The running theme here is: take the pain away!
I do need to find out why the pain is there and why the lymph nodes are enlarged. We have another doc appointment scheduled, and it’s back to waiting again. My hope is, now that this scare is out of the way, they will once again consider steroids. The steroids have been the only thing that’s helped relieve the pain while still letting me function.
I’m so very, very tired of hurting.
The good news is, the vicoprofen DOES help some with pain. The bad news is, it knocks me out so I’m spending more time sleeping than awake, and I just have too much to do than to sleep my life away. The Ami works well for some of the pain I’m feeling, but at doses high enough to kill the pain, it also knocks me out.
So… either I sleep or I hurt. It’s like I have to choose. Seems to me there has to be a better option.
I also need to find out what the rash on my breast is and why some of the other symptoms were there. I also need to find out what the enlarged lymph nodes mean. Awhile back, they tested me for lymphoma because of the large lymph nodes and the presence of large amounts of lymph fluid in my body. The test was inconclusive, and they wanted to do a lymph biopsy. I’m guessing the lymph biopsy is probably one of the next steps. So while breast cancer is ruled out, lymphoma, a type of cancer, is still on the table.
In the meantime, I’m hoping they’ll listen to me at this new doctor’s here in this area, and maybe, just maybe, I can get back on some steroids and have some relief from the pain while they figure out the rest of the problems.
Thank you to everyone who has been supportive, praying, and caring. Your well wishes and energy and kind words sustain me when I get frustrated, when the pain gets bad, when I’m waiting… I love and appreciate you all.
For now, I send up lots and lots of gratitude that it wasn’t breast cancer, and lots of positive energy that the symptoms will all have a definable and treatable cause.
In the meantime, eat lots of Klondike bars for me. I think Klondike should compensate me for the recent surge in sales my blog posts have likely caused.
thank you to every one of you who sent messages, left comments, sent emails, prayed, sent energy, made me smile, distracted me, or otherwise made the wait for results easier to deal with than it would have been without you. YOU are the reason I got through the wait. And just think how many articles all of this has inspired in me, articles I hope will help other women in similar situations.
Thank you to everyone! (HUGS TO ALL)
Love and stuff,
Michy
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Posted in Personal | 5 Comments »


August 12th, 2009 at 6:31 PM
I understand so much of how you are feeling now. We have to be our own advocates, and it’s good for you to pursue this and try to get to the bottom of it. Maybe it’s related to the Lupus, but maybe not. Best of luck in your fight to conquer the pain and figure things out.
On a personal note, I deal with chronic muscle pain daily and believe it or not, meditation works just as well for me as medication ever did, maybe even better. Just the act of silencing the mind, and shutting all of those thoughts up, helps to release some of the tension/stress and alleviates some of the pain.
Best of luck to you with all of this. You’re in my thoughts.
Teri S.
August 12th, 2009 at 6:41 PM
I hope they find conclusive answers for you soon, Michy. You will continue to be in my prayers. I also hope your pain can be dealt with soon. I wish you all the best.
August 12th, 2009 at 6:46 PM
Thank goodness! Prayers continue your way, Michy. You are an amazingly strong woman and you handle the struggles that come your way with grace, but I would love for your life to be struggle-free and easy.
Oodles and oodles of hugs and well wishes,
Beth
August 12th, 2009 at 8:06 PM
Thank goodness the tests came back okay. I am still thinking about you and I hope that you start to feel more like yourself very soon!
August 12th, 2009 at 8:24 PM
So glad to hear that it’s not breast cancer! What a terrible ordeal they put you through. I hope you find some answers to your problem soon, and that you can find a way to get rid of the pain. I know how it feels to be in so much pain all the time- not fun.