I'm just going to lay it out out there today. Here it goes.
I am seriously trying to not freak out. Today I am majorly struggling with fear. And yes, fear is of the Devil. I know that. I know the truth, but I am still a sinful human being and am struggling with the temptation, nonetheless. I have fear of not knowing what is wrong with me, fear of not knowing what is wrong with our daughter, fear that I have something serious that the doctors aren't figuring out soon enough, fear that I might have cancer, fear that I might drop dead any day if they don't figure it out soon, which would leave my husband alone to care for our daughter, fear that the worst is yet to come, fear that I still feel pretty awful and my symptoms are still very typical of leukemia. Fear, fear, fear. In fact, now with my swollen lymph nodes and not really having any other signs of actual illness other than feeling generally terrible, I have just one more symptom of leukemia I didn't have 2 days ago. It doesn't help that I know for a fact one week ago, leukemia was high on the list of possibilities with my then-high white blood cell count. In fact, doctors were kind of freaking out, mentioning things such as a bone marrow test, and that was, in turn, freaking me out. Oh, and let's not forget the resident doctor who, after hearing me explain how I was feeling, looked at me and coldly said, "Did you google that or something, because that's just too textbook leukemia." Of course, I'm pretty sure she thought I was a drug addict looking for pain meds because that was my only main complaint at the moment and she treated me just awful and couldn't even feel the lumps on my legs because she didn't take the time to properly examine me ("Lumps? What lumps?"). I wanted to holler, "I DON'T WANT A PILL. I WANT ANSWERS!" I know my body pretty well, and I just know something is not right. I just know it. I don't know what's wrong, but I know something's wrong, and I am desperate for answers.
I feel like I just can't get answers no matter how hard I try. I feel like the doctors aren't taking me as seriously as they should be, and I just want to tell them, "Listen! SOMETHING is WRONG with me!" But it seems like all I can get is, "It's weird. Who knows?" Please don't get me wrong, I am thankful for our doctors and I know they are a whole lot smarter than me, but sometimes I expect them to know more than they know and that is not fair to them. The one thing I do ask is that they take me seriously and try their best. I do think that finally some of them are taking me seriously.
Oh, and I'm told it can't be leukemia now because my white blood cell count it normal. That is the only reason they are no longer considering it, as far as I know. I believed that one at first and thought, "that makes sense" until my husband, a very intelligent medical professional, looked up leukemia in his medical textbooks and found out that in fact you can have a low, high, or normal white blood cell count in leukemia. Part of the reason I'm getting worried again is because of my tachycardia (high heart rate). Pretty sure getting worried and having tachycardia is not the best plan. Ha! I thought that this, along with my normal cbc's, was the reason the doctors are no longer thinking leukemia. Turns out that as I look up causes for tachycardia, it's again a classic sign of leukemia. WHAT?? I think I need to stop googling my symptoms. And yes, I told that resident doctor of course I researched my symptoms. Who wouldn't when you haven't got any answers from the medical professionals? Are you telling me that if you were going through this, you wouldn't look up in your medical textbooks to try to figure out what's wrong with you?? Pretty much I have every single symptom of leukemia except the abnormal blood count, which, like I mentioned before, can be normal in some leukemia patients. I am ready to get a second opinion again (make that a 4th or 5th opinion). Is it bad of me to hope that these swollen lymph nodes in my neck and everywhere else develop into a virus or something so that I have an excuse to go back to the doctor to seek more answers? It's scaring me that I have all these swollen lymph nodes but no sore throat, no fever yet, and no cough/head cold, etc. If it would just develop into something, I could go back to the doctor, but instead here I am waiting. Waiting, waiting, waiting. Waiting for my results, waiting to see if I get worse or better, waiting for our daughter's results, waiting for that phone to ring, waiting for my next medical appointment, waiting to see if I am actually sick or not so our daughter can then maybe come back home. I guess I need to learn patience. And as I type this out, the Lord brings this verse to mind:
There is no fear in love; but perfect love casteth out fear: because fear hath torment. He that feareth is not made perfect in love.1 John 4:18
No matter what I may feel, the above passage is truth, and I am thankful for that.
5 comments:
Hi, Jenna ~
I'm just now catching up with all your medical trials. I'm so sorry you have been enduring weeks of not knowing anything, together with your baby girl's frightening symptoms and pain.
I realize you are probably getting all kinds of advice from everybody you know (including the mailman), but I wanted to toss in my two cents and suggest that you ask your doctor to test for Lyme disease. It really is an extremely underestimated infection which can cause symptoms very similar to the ones you are currently experiencing.
Additionally, my own son showed a terrible, raised bruise on his shin when he was three years old. It wasn't your everyday bruise, and since there is childhood leukemia in the family, I had him checked out. Long story short and many agonizing weeks of waiting for lab results (they were lost the first time around), he was finally diagnosed with tularemia, mycoplasm (which causes arthritis), and something else which escapes me at the moment. He was put on two antibiotics for six weeks!
The main thing from the two illnesses that I listed is that they are both carried by ticks. Since you spend a good deal of time outdoors and gardening, it would be wise to rule these out as they can be terribly debilitating for life if not caught and treated early.
Here's some info on lyme:
http://www.webring.org/hub?ring=lymering
I, and others, will be keeping you in prayer.
My best,
Pearl
Thank you, Pearl. I'm not sure if they tested our daughter for it or now, but I know they did test me for Lyme Disease. I'm not sure if the result has come back yet or not, though.
Just one more thing, and I'll let it go: even if you do get a negative result on the lab work, this doesn't necessarily mean it's accurate. Most labratories don't have sophisticated enough equipment to detect lyme (there are about two labs in the US that *are* qualified). Consequently, countless people are getting false negatives and then living in misery, wondering what's wrong with them. At the risk of sounding like a harping alarmist (I prefer the term "realist"), don't hesitate to locate a lab which specializes in tick-borne diseases. In that link I sent, there were a few websites for Canadian organizations which would be helpful in that search.
Be well,
Pearl
Aunt Jewel,
Thank you so much for your comment! I decided not to publish it just because for now we are not letting out our daughter's name. We are a little paranoid about safety and things (even though the chance is so small), so right now we're not publishing names. But thanks again for your comment. It was SO nice to hear from you!! Take care!!
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