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Day 72: PLEASE Don't Listen to Them!!

Tuesday, March 13, 2012

This is something I have been wanting to scream from the roof tops since I got my splenectomy and started feeling better.
It all started after having my boys. When I was pregnant with Jacob I was SICK for 9 months. Throwing up everyday, being exhausted, low blood levels, the works. Just bad pregnancy stuff though I thought and sucked it up. After I had him I was still "off", tired, etc. but I really thought it was just a bit of postpartum. And it wasn't long before I was pregnant with Joey. (They are 21 months apart.) Again, I was SO sick. I felt horrible. Could barely move some days, my levels would get so low. My OB would take all kinds of tests but couldn't figure it out. They did finally figure out that I was telling the truth and I was taking my Iron but it made no difference to my levels. I made it through, had Joey and then again COULD NOT shake off the tired feeling. I KNEW this time that it was not postpartum. I just knew something was wrong. My OB at follow ups would take a few more tests but with nothing new and no suggestions. I went to SEVERAL family doctors. One would say, It's your hormones, you just need birth control and you'll be better. Another jerk, I mean doctor, would laugh at my google efforts and say it's just depression and prescribe me anti-depressants and tell me to let him be the doctor. I think I had my thyroid checked a dozen times. And more than that was told that there was nothing wrong. But I KNEW there was. I just wasn't alright.
So finally my SIL suggested I go see her hematologist since it started with my levels dropping so bad when I was pregnant. That's when things started to turn around. It was still a LONG road. I was on steroids for almost 2 years. going to get my blood tested from bi-weekly to weekly. I got a bone marrow biopsy (I do not recommend that). OWE! Had every part of my body scanned a few times.
They found my spleen was the size of a small basketball. I went to Duke University and to Wake Forest University. It was Duke that found that I have a rare blood disorder, Spherocytosis, where my blood cells are round not oval and not like a donut so they weren't able to pass through my spleen.
Finally with the help of yet another hematologist I was able to get my spleen removed which now allows my blood cells to pass through my body freely. NO MORE STEROIDS!! And I don't even have to see my hematologist anymore unless my rhuematologist finds my levels start to drop again. I still have to see my rhuematologist every 4 months because I also have an auto-immune disease/disorder that plays like lupus but doesn't show up on the one lupus test, BUT I will take every months over every week any day.
The point to all of this is to listen to your gut. If you just KNOW something is wrong with your body, Listen to it. It took me over 8 years to feel better. I would let months go by between seeing those doctors in the beginning and think maybe it was just me. Maybe I was crazy, or depressed. Don't let it take you that long. Listen to your instincts, listen to your body, listen to your heart. No one knows better than you. And be persistent. Don't give up. Never, ever give up.
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Member Comments About This Blog Post
    Thanks for this post I just found out I have spherocytosis as well I had a lot of the same symptoms it feels good to know there is hope and I may feel better soon thanks
    3396 days ago
  • no profile photo CD10364891
    Wow, I'm so glad that you kept pushing and finally found out the reason for the symptoms. Thanks for the reminder to listen to ourselves. emoticon
    3429 days ago
  • EMKO0916
    This is an excellent reminder! Glad you were persistent and got yourself taken care of!
    3429 days ago
    If we didn't stand up for ourselves where would we be?? Glad you got it all sorted out!!
    3429 days ago
    Happy to hear you finally found the culprit and can now feel better!
    3430 days ago
    I totally agree. I didn't listen back when I was pregnant with my first daughter & she's in Heaven now b/c of it. Then a few years ago my now 16 yr. old will even tell you, she might not be here if her mama wasn't so PIG HEADED. emoticon Yes I am & PROUD of it. She was having problems & she is a child that #1 doesn't get sick & #2 doesn't complain or miss school so for her to Call & ASK to go home ((RED FLAG)) somethings wrong. They blamed to on Everything except what was wrong. I wanted test done, they didn't want her EXPOSED to radiation emoticon It's not like she does it every week, finally to SHUT ME UP they agreed & it was a Good thing b/c her appendix were ready to bust! They had to do Emergency surgery, her dad Barely had time to get there.
    So ALWAYS, ALWAYS!!!! Listen to your gut! I'm so glad you stuck to what you NEEDED!
    3430 days ago
    I'm so glad you didn't give in to them!
    3430 days ago
    Way to go. You're right, we know best about our bodies and we need to be our own advocates when we know something is wrong.

    I'm so glad you finally got the treatment you needed and are feeling better!
    3430 days ago
    That's insane, thank you for posting your story.
    3430 days ago
    Doctor's think they know everything. I don't care how many years these people went to school, they don't listen (not all of them, but a lot of them). a person knows their own body and know when something isn't right and it shouldn't be dismissed as a psychological problem. It is annoying!!
    Thanks for sharing, and have a great day!!
    Pam emoticon
    3430 days ago
    Way to not give up. My cousin passed away from cancer and the first two doctors told her she had an infected lymphnode and gave her anitbiotics. You know your body and you weren't afaid to tell them they were wrong. My hats off to you. I hope you are doing well.
    3430 days ago
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