Friday, September 2, 2011

Mind numbing fear and the blessings that come with it.

Lately a few of our fellow bloggers and real life friends have been having health fun. Health issues are never fun or easy. Some talk about it and some don't. Both ways are fine. Watching people i care about struggle has brought up some memories and so I thought to share some feelings as a show of support and a reminder than even when it feels overwhelming you are never alone in your fear.

When we first moved here my amazing guy decided it was time to push me to really figure out my health. I was tired all the time, bruises took days or even weeks to heal, I looked just plain sickly sometimes even though my weight stayed the same and higher than I would like even though I ate little. Nevada is a specialist state. The rate of lawsuits here are so high that your primary doc handles little stuff and passes you on for big stuff so she sent me to a hematologist. He discovered something odd. While my white blood cells are in the normal to sometimes low count range the percentage of them that are lymphocyte cells are very elevated. He tested again and again and always got the same results. Elevated lymphocytes. Well this can be a fluke or it can be a big deal. Two big deal options were cancer. One would kill me very fast and one may never kill me at all. So while we waited for some very extensive testing results and time between tests to check for accuracy I felt like my life was in this horrible holding pattern. 6 weeks of wondering about my life, my future, my children and their future. I have never been so freaking scared. I rarely slept. Every bruise was a new reason to worry. Every time I had a migraine I was terrified. I researched until I was blue in the face.

Then the results came back. Not cancer but no clue why you have the abnormality. My bruising was chalked up to being so fair. So it was on to more tests, this time to the endocrinologist. I was tested for everything he could think of. More waiting and worrying. Luckily most of his tests wouldn't result in a fatal diagnosis.

Once again I was healthy. I was the healthiest sick person they had ever seen. Sure my blood had weird oddities but nothing that pointed to a specific diagnosis. Then came the rheumatologist. The guy was a complete jerk but was sure it was FMS. And so I had an answer.

Of course sometimes answers don't feel like comfort. The answers can be scary and life altering. They can feel like an awful weight pressing down on our world and forever changing things. I tend to be grateful for answers even when they suck because I would rather know what battle to wage than stand on that bleak precipice and hope I jump the right direction to flee the demons chasing me. It truly is in how you look at it.

So if you are facing challenges please remember that you are not alone, you are loved, and the worst result you can ever get is "Inconclusive". Test on. Push on, fight on. Get your answers and know that whatever the outcome you won't face it alone.


  1. Thank you for sharing that. My ER visit this weekend was troublesome, but the net result was a relief. Passing a stone is VERY PAINFUL, but I've Vicodened it before and I can Vicoden it again. :-)

    Knowing is better than not knowing. And very bad treatable pain is loads better than anything untreatable.

  2. Idiopathic - a word I have heard all too often. That word stings when you've shelled out tens upon tens of thousands for an answer.. or at least a clue as to what is wrong.

    You can't count on doctors to figure anything out. Often.. you can't even count on them to read your medical chart. For several years they diagnosed my sister's now stage 4 pancreatic cancer as .. menopause.

    Get your own medical records.. and learn to read them. Sometimes you have to go through a lot of doctors to find one that will listen. Medical information changes.. and mistakes happen.

    Good luck and I hope you find your health again!

  3. North I have traveled that road. It sucks. I missed Bug's first steps because I was on the floor from the pain of that.

    Anne you are so right. You have to take charge of your own health and keep looking until you find a doc who listens. Thank you for your well wishes. Honestly my problem now is mostly stress related. Having family out of our immediate 4 in the house and being put through the ringer emotionally keeps my own stress up. Hopefully we get things settled down for them and for me soon! :)

  4. My sympathies North, been there and done that too. When you first get up in the morning and "go" and sorta look down and see red... you know its gonna be a bad day ( or several ).

    Lila, my sympathies to you also, I've got at least one cousin with what you have, and dated two women with it. Hang in there.

  5. Hang in there, and yes, knowing IS better... even when the answer is not the one you want.

  6. Thanks Matt and NFO. I am good at hanging in. Surviving and finding the good is a talent I have. ;)

    I just wanted to remind people that even though you may feel crappy you aren't alone and there is always someone loving and supporting and fighting for you. Hope abounds even when we feel awful.

  7. Lila, Thank you for sharing, I pray you improve. Just remember Dr's practice medicine. The key word is "practice" you are the best judge of what might be wrong. If you think they should be doing more, demand it. I know a little of the pain, I lost my wife to cancer in 2005 (9 months after I returned from Iraq) I don't wish to scare you just encourage you to stay vigilant. Your words encourage others who are facing illness also. God bless you, Duke.

  8. Lila- Thanks for sharing, thanks for prayers, just thanks.

  9. Thanks you Duke. I still see my hematologist. We monitor my lymphocyte issue regularly. I also plan to push the rheumatologist. I need to get more on top of it. I sure try to encorage others. So often it is easy to think we struggle alone. I may be anti-social in a lot of ways but mostly just because I seem to be odd to others.

    TinCan you are so very welcome. Continued prayers to you and yours.

  10. Thanks Lila :) The Lithotripsy went well - But as suspected the FMS is now taking it's toll. I'm trying to get back to my Pollyanna self. My poor daughter has seen me sick more times than better. Praying for you and yours as well. I do love your blog :)
    (TinCan Assasin's wife)

  11. I am glad that you are getting some help Becca though sometimes for us it feels like relief is really no relief. My Bug is 9 and she knows that some days Mama just is not on her game and needs to just take it easy. She is super sweet about being helpful. Even little 2-year-old Monkey can tell when Mom needs extra soft cuddles. it still makes it hard because as a mom we hate feel like we aren't 100% for them. I am sure you are doing beautifully with your little girl. Many prayers for you!!

  12. Good luck and best wishes; hope you can get some relief from the FMS. I know a couple of other people with it, and it can wear you down if not treated.


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