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.