Doctor's appointments

Going to the doctor makes me crabby. I get crabby even thinking about it. I hate sitting there waiting by myself. But I do not want anyone there with me. I do not want anyone else besides my husband to see me at my weakest and hear everything that is wrong with me. I want him there but I do not want him to take off work. I tell myself if I have to have something major done like surgery then he can take off to be there.

First you go in and have to explain all your symptoms to the nurse first. I don't even know which symptoms to explain. Just my new ones or all of them? Then there are some symtoms that are intermittent. Do I really need to go over all of it again and then it also depends on which doctor I am seeing. Then the doctor comes in and I explain all over again. Then when I am unsure how long which symptom has been going on for they look at me like I am dumb or crazy. Or both. I have been sick for so long I feel like it all blurs together. How do you explain that to someone who is healthy. Before I became sick I would not have understood. Just getting through a day without falling apart is sometimes hard enough.

My primary care doctor doesn't even need to review my chart much because he has gotten to know me so well. He even knows I am sarcastic and a smartass. So he frequently cracks the right dry humor jokes to make me laugh. He is caring even if he is a little reserved. Lately he tells me how sorry he is that I am so sick and questions whether I should be working full time still. I appreciate his concern but it makes me want to start laughing hysterically and ask him how else does he think he will get paid for all my visits. Seeing the pity in his eyes make me want to have a breakdown. I do not want to be a sick person. I do not want to be viewed as just that. It makes me want to scream because I want the old me back.

As he reviews my labwork to see if there is anything else he can test me for while I am waiting to get in to the neurologist I again want to laugh hysterically when he says I have had full bloodwork done. I am examined and my painful abdomen is gently palpated. Even though it is gentle it makes me clench my jaw. We discuss nest steps and I can tell he is as frustrated as I am by the lack of findings on my tests. Everything so far is normal except my stomach doesn't digest food properly. Normal range and no significant findings are dirty phrases in my vocabulary.

Then once again I will have to have blood drawn. The lab staff knows me by now and usually my blood draw is quick and almost painless. If I have to have other tests run I spend time in the office or on the phone when I get home scheduling it. Always having to wait. A few weeks is typical. This time I can't get in to see the neurologist for 2 months.

I leave always feeling frustrated and upset. Anxious they will never find out what it wrong with me but also anxious that I might not like the answer I get. With a medical background I know what they are testing for most of the time. This is a blessing and a curse. A few times I know the test is for cancer or a debilitating disease and then my anxiety runs high until the results come back.

I do not want to go to the doctor again. No more tests, no more exams, nothing. I want to mentally fling myself on the ground and refuse to move. But I know that this is an impossible thought. I will never find out what is wrong with me if I do not go to the doctor. I never used to understand why people stressed out about going to the doctor. I now know it have nothing to do with the actual doctor visit. It has everything to do with my anxiety and fears of the unknown.

Rambling

I sat down and made a list of my symptoms. A real list of every little thing I feel and have. Since I have decided to not lie to myself anymore my list is true. The truth hurts right. The list takes up over half of a page of notebook paper. The length of this list scares me.

I no longer can remember when some of the symptoms started or how frequent they occur. I wonder if that is a symptom. My forgetfullness. Some days seem blurry, almost foggy. The details of how the day went or what happened are just out of reach of my memory. Like a hazy childhood memory. Could that be a symptom or is it a result of my malnutrition and/or fatigue? Then I wonder does it even matter. It occurs therefore it is.

Part of me wonders if I am crazy. If craziness and anxiety are causing all these symptoms. Maybe I just need a shrink or a padded room. Some anti-depressants & a Xanax. But the rational part of me slams a door on this theory. The rational tells me that a whole lot of crazy can cause a whole lot of physical problems with a body but it cannot cause some of my symptoms. I do not believe it can cause my stomach to not work properly, cause extreme muscle cramps, cause numbness/tingling/weakness in my legs, cause my muscles to twitch & shake at times. To cause my heart to race at odd times and become dizzy. So I push those thoughts of craziness away. But I wonder if this illness will cause me to lose my sanity.

I want to be better. Better with my health of course. But also a better friend, wife, mother, daughter, etc. I could go on and on. I feel like I have grown emotionally & mentally so much since I have been sick but my body is holding me back. I look at my husband and kids and want to do so much more for them. I feel like I constantly fail every day. Hearing my daughter ask why mommy always has to get sick on fun days broke my heart.

My emotions go up and down so much sometimes. One day I feel so positive about life and I roll with the punches. The next I feel so drained emotionally. I want to curl in bed and just sleep it away. Then the next I am so angry at everything. Bitterness makes me bite my tongue.

So I am going in this week to see my doctor and get a referral to a neurologist. I am trying to be hopeful that this time I will get answers. But I am tired of having my hopes broken with every "normal" test I have had.

Letting go is hard to do

I am stubborn. I can hear my husband laughing loudly as he reads this. He has known this for years. I have finally come to terms with it myself. My stubborness has not allowed me to admit to myself that I am stubborn. If that makes any sense. My tenacious attitude has led me to hang on to things way past the point I should have let go.

Letting go is hard to do. I have had to let go of much in life. That is part of being human. We let go of bad relationships, friendships and jobs. We let our loved ones go when it is their time. But I have always struggled with it. Especially since I have become sick. I have had to let go of time with friends, fun events, visiting family and most importantly myself. I have had to let go of parts of myself. Pieces of myself fall away and I have been desperately trying to pick them up. Recently I realized that I cannot do this. I cannot view myself as Humpty Dumpty who fell off the wall into pieces.

Instead I try to watch my pieces fall and look for the new shiny, raw piece of myself underneath. I have to let go. Sounds so simple, so easy but it is not. Breathe deep. Let go.

The one thing I have decided to let go of recently is a big lie I have been telling myself. I have been telling myself that I am not getting worse. My stubborn nature had dug its heels in and I refused to believe that my health is worse. That every new symptom that pops up is not a big deal. Let go of this lie. I am getting worse. I spent Mother's Day in urgent care receiving IV fluids and sleeping on the couch. Less than a month later I am rushed to the ER with chest pain and shortness of breath. A night in the hospital and many tests later I still have no answers.

I do not want to get worse. I do not want to spend more nights in the hospital with my husband's sad eyes watching me. I do not want to be a "sick" person. I do not want to miss more baseball games and zoo trips with my kids because I am bent over a toliet. I do not want to seek second opinions and travel to Mayo. But I am getting worse. So I must let go and accept it. I am hoping this quote will become true.

“Last night I lost the world, and gained the universe.”
― C. JoyBell C.

Hopefully if I let go and lose my world I will gain the universe. Cheers to letting go.

What can fatigue do for you

fa·tigue

/fəˈtēg/

Noun Extreme tiredness, typically resulting from mental or physical exertion or illness. Extreme tiredness is the definition of fatigue. The dictionary makes it seems so simple when in fact fatigue is a complex creature. Before I became sick I was tired. I am a mother and spent many months waking up with 2 beautiful babies. Every human being has felt exhausted. Long days at work, crazy vacations, living life to the fullest can be exhausting. We all go home at the end of a long day and say "That was the longest day ever! I am SO tired!" But I never understood what fatigue meant until I was sick. I have family and friends with chronic illnesses. I am ashamed to say I had NO idea what they were going through on bad days. Fatigue is not just extreme tiredness. It is so much more than that. Fatigue means I have to decide if it is worth it to put on makeup, sweep the floor or carry laundry up and down a flight of stairs. Fatigue means even on my good days I am still learning to discipline myself to not overdo it. Fatigue means sitting at my son's baseball game and being so overwhelmed that I watch a inning. Then I sleep in my car for a few innings while my family enjoys the whole game. I wake up for the last few innings and feel mom guilt over the part I missed. Fatigue means missing out on jumping on the trampoline with my kids. Fatigue means I could sleep anywhere at anytime. I feel I could snooze in a room full of screaming kids. I could lay down on the dirtiest floor and not even feel disgusted because the need to just lay down and close my eyes is all consuming. Fatigue means the task of heating up a bowl of Ramen noodles seem like too much work. But even though fatigue has taken so much it also has given back. Fatigue tells my body to slow down. To stop and smell the roses. Fatigue has given me wonderful conversations with my kids as I lay in bed and ask them to tell me a story. Fatigue has given me a deep appreciation for the good old days of endless energy, long workouts, late nights and running a half marathon with my husband. Fatigue has given me the ability to let the dishes wait, to read one more chapter in a book or to snuggle more with my love while watching a movie. Fatigue has taught me to sit back and observe life as it happens instead of rushing through it day by day. Fatigue is teaching me to let go. To let go of control, let go of stress, let go of guilt. With every negative there is a positive it is just up to you to search within and find it. So what can fatigue do for you?