More questions!

I guess I should do my update. I am a bad blogger. Gracie is right. Plague feels like the right word. I have taken to describing myself as a medical conundrum. Really. It seems like the longer down a treatment path I go the more questions come up. I haven't been getting better in general. Pain, fatigue, brain fog. I see a pain clinic every month. This clinic is a bit frustrating because 1-they never told me they were not a preferred provider so I got a massive bill. 2- I never see the same doc. Ever. Each month is whomever is on office duty.

So I have had some weirdness and decided to track it. Over the last 2 years I have lost 60 lbs for no reason. No added exercise and no huge diet change. So I asked the clinic for my last few vital stats. A problem was then discovered. My heart rate is never below 110. I didn't notice really. Wanted the stats more for the weight.
Well due to the lack of care I decided to switch doctors. I met with hubby's doc to interview him. He was the one to see the heart issue. He checked it then and it was 117. He said I needed a cardiologist appointment asap. That my heart explained why I am so exhausted. Could explain the pain too. The cold hands and feet.Pretty much all of my issues could be because my heart it going nuts.

So now we have full GI workup because of the Celiac's worry and full cardiology work in the works and I feel so awful I am lucky to go from couch to bed to car. Just shopping is awful. Mopping is torture. My house is a mess. So for Christmas all I want is a maid service to completely clean my house top to bottom. And some freaking answers. Of course I'll settle for the answers.

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.

The Monster List for FMS and feeling rather out there.

As I try to figure out this thing called Fibro (And pull Gracie along because I am pretty sure it is what she has too since she has never been able to get diagnosed either.) I discovered a fellow sufferer who turned her high-octane exhausting career into a wonderful job where she gets to be home but still make money and she helps those of us who suffer with her. She became the Ask.com guru on FMS and Chronic Fatigue Syndrome. She keeps up on research and posts valid tips and things stemming from that research to help us in our own journey's. She has what she calls "The Monster List of Fibromyalgia Symptoms". It has over 60 things related to our lovely life. Some even are their own disorders or diseases. At last count I have 43. I am afraid I am developing another. I feel very frustrated. I feel like such a frumpy failure some days. Not trying to complain and my hubby tells me I am being silly but some days I am lucky to keep track of the girls and cook dinner. I am usually in shorts and a tank. I don't wear makeup. Being raised by a single dad until I was 16 meant that learning girly things never really happened. My amazing guy tells me often how beautiful I am and how amazing and I am so lucky I have that in my life because if I had someone who had no patience for this and who expected some perfectly coiffed barbie all the time I would feel even worse. Ugggg..... That is one of the rough things about this illness. It is ever changing and because we have to limit ourselves and completely change how we do things it means that we learn very quickly if those around us truly love us for better of for worse. I am lucky. I know some who aren't.


On another pity Lila party moment: I had a moment today where I was reminded yet again how very different I am from some of the people who should be closest to me. I don't know how it happened or why but I seem to be even farther away from some of the people I love. I do love them, so much. My life is about love. I just seem to have nothing what so ever to relate to them with. About the only thing we seem to share anymore is a love for my girls but even then it is rough because what we value is so different that often blind trust has resulted in some situations that haven't been ideal. Humph..... This trying to vent but also be respectful is a precarious line. I want to have good relationships with everyone I love but I also don't know how to do that most days. I am happiest at home or with my husband exploring somewhere, metal detecting, shooting, doing what we do. My faith is so important to me yet places a wedge because either they aren't sure they believe at all in anything bigger than themselves or they aren't sure they like what I believe. How do you find a place to heal old wounds to the point of closeness when you are so very different?