Consumption

I’m not sure if it’s dealing with a cold/flu on top of all of my other symptoms or if it’s just having been sick for so long, but I’m so tired of feeling terrible. I’m tired of everything in my life revolving around how I feel. I’m tired of having to weigh how I feel against what activity I want to do or what chore I need to get done.  I’m tired of watching my life go by and not getting to be a part of it.  I want to wake up before my kids in the morning.  I want to have the energy to take a shower and make dinner in the same day.  I want the constant headache, nausea, dizziness, and pain to go away.  I want my circadian rythym to be back to normal so it’s not excruciating to get up in the morning and I’m not wide awake when everyone else is sleeping.  I don’t want to be disabled by fatigue.  I don’t want the first thing I think of to post as a status update on facebook to be related to how crummy I feel.  I want to be a partner to my husband instead of feeling like a burden.  I want to play and ride bikes with my kids.  I want to feel normal, not portion out every step of my day so that I don’t run out of energy before I run out of daylight. 

I’m scared that it will just keep getting harder and harder to get by every day.  I’m scared that I’ll lose all my friends because I can’t connect with them the way I want when I spend so much time in bed.  I’m scared I’ll forget something really important.  I’m scared that I’m going to use up the little bit of fight I have left to go to ANOTHER doctor and still not have a treatable diagnosis or any real answers.  I’m scared that the only memories my kids will have of me will be of me sick.  I’m scared that my marriage will suffer. 

I’m scared that this new doctor will find that I have a tumor on my pituitary in my brain…and I’m scared that he won’t.  I’m scared that I’ll have to have brain surgery and I’m scared that my body will react poorly the way it did the last time I had surgery.

I’ve been battling this dis-ease for over 4 years now.  I struggle EVERY day with how I feel.  Lately I feel like I can’t cope and “get by” like I used to.  Now I’m being referred to the 8th doctor I’ve seen for these same symptoms for even more tests, appointments, pills, and with diagnosis comes surgery.  Dr. L is a neuroendocrinologist at Swedish and the new diagnosis that is being considered is Cushing’s.  The good news is that he seems to be the expert on this condition.  People fly out here from all over the country to see him and he has determined the best testing route to get solid answers on an illness that is very rare and hard to diagnose. 

Quick Synopsis:  In Cushing’s, basically, there is an overproduction of cortisol in the body.  When the amount of cortisol in the blood is adequate, the hypothalamus and pituitary release less CRH and ACTH. This ensures that the amount of cortisol released by the adrenal glands is precisely balanced to meet the body’s daily needs. However, if something goes wrong with the adrenals or their regulating switches in the pituitary gland or the hypothalamus, cortisol production can go awry.

To everyone I love…I’m still here.  I still love you.  I wish I felt better so that I could be more involved in your lives.  I’m working as hard as I can to figure this out and I hope you’ll all still be around once I do.  Until then, please bear with me.  I will tell you if I don’t feel up to something and I will tell you when I need to rest.  Just know that if you come by unannounced, I might be in bed.  And I might be in my jammies.  Unless it’s after midnight.  😉

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I’m A Spoonie

spoon_NorproWhat do you think of when I say SPOON?

An 80’s Valley Girl… “Gag me with a spoon!”
Mary Poppins… “A spoonful of sugar!”
A truck stop diner… “The Greasy Spoon.”
Soundgarden’s classic song… “Spoonman.”
Snuggling with your honey… “Baby, let’s spoon!” A friend of mine shared an article that she found which sums up how I’ve been feeling lately.  You can read the full article here:  But You Don’t Look Sick  Basically, it describes the life of someone with a chronic illness.  It lays out an analogy using spoons to measure how much energy you have each day and how easily you can use up that energy.  It describes how little things that you never used to think about (like taking a shower AND doing your hair, making dinner, etc.) can become huge obstacles. 

This week, I ripped through all of my spoons on Tuesday and Wednesday trying to juggle 5 kids and all the rescheduling from the previous week’s snow days.  It took more energy than what I had reserved so I borrowed spoons from Thursday and Friday to get it all done.  This means that on Thursday I snuggled in bed next to Corbin and slept while he watched movies beside me.  I had to sleep sitting upright because lying supine put too much pressure on my hips.  I felt drugged-I was so tired.  And today every joint in my body aches.  I feel like the Tin Man’s little sister.  Not because I’m missing my heart, but because I’ve rusted solid.  I feel like I’m dragging anvils lashed to my arms, legs, fingers, and shoulders. 

My heart breaks for the time this takes away from my family.  My kids don’t understand why mommy can play, and move, and cook, and organize, and have energy on one day, but not the next.  It’s hard for my hubby to understand that by the time he gets home, I’ve already been forced to use up all my spoons just taking care of the kids.  And, I’m sure, it’s even harder to have worked all day long and have to pick up so much slack because I’m feeling so crummy.  So I shared the Spoon article with him today and I think it helped to paint a better picture of my current physical condition.  I think he realized that I’m not picking and choosing when I feel good, that I don’t have control of when or how hard the fatigue bashes me over the head like a giant sledge hammer.  And that I wish I had more to give…especially to him. 

When I was talking about taking Tatyana to wrestling in the morning, he asked me how I would have enough spoons to get up at 6am and drive her to the high school.  I know it sounds weird, but that quick question was so good for my heart.  To hear that he understands better than anyone can from the sidelines and that he wants me to have as many spoons as I can each day really affirmed his love for me.  When we spoke our vows, promising to love each other “in sickness and in health”, I honestly expected that we’d spend most of our marriage in the latter half of that commitment.  And while it means the world to me that he will stand by me, even when I’m utterly spoonless, my hope is to find answers, regain my previous vigor, and to heal so that my life is, once again, overflowing with spoons…so many that I forget to even count them anymore.

Reflection

I have been feeling drowned with fatigue and struggling to cope with the tasks of my daily life because of it for quite some time. Granted I have 5 kids in 3 schools with busy schedules and that can be a lot to manage when I’m at the top of my game. Some days are better than others and I feel like myself again, easily multi-tasking motherhood and enjoying life.  Other days I feel lucky if I’ve had a shower, done a chore, and no one’s been lost in the shuffle.  😉   In retrospect, I’ve been water-boarded by this feeling in varying degrees since Eden was born. 

A month ago, after another severe flare and feeling like I had the flu, I went again in search of answers.  I visited the general practitioner just to quickly rule out something contagious.  After getting the usual assumptions of thyroid, blood pressure, diabetes, etc. and passing each test with flying colors, the doctor was sure it was a virus similar to Mono because of my elevated liver enzymes.  

Two weeks, my usual doctor, and 3 vials of blood later, my naturopath called to say that she had run a Sed Rate Test and the result was high pointing to inflammation.  My Elevated Liver Enzyme results had doubled since my last test.  She also told me that my ANA Test results were positive and that based on the fatigue and my many other symptoms, she was pretty sure my diagnosis would be Lupus, a chronic Autoimmune Disease

Dr. Karen wants me to see a specialist to get a definite diagnosis.  So I’m in waiting mode until just before Christmas when I have my initial consultation with the Rheumatologist.  I’m proudly not scaring myself by scouring the internet for horror-stories, which can be easy to do in this age of technology.  I am gathering information so that I can make informed choices.  I’m preparing questions for the doctor and familiarizing myself with terminology and jargon so that I don’t need an interpreter to explain the conversation with Dr. J in December.

I was sitting in the Safeway parking lot when I took the call about my results, fat rain drops trickling on the windshield.  I had scrambled to gather up groceries and buckle Giant Baby into his carseat and I remember thinking the raindrops were symbolically welcoming tears.  But I wasn’t sad.  I felt vindicated.  I felt like all the symptoms I’ve had were finally being justified.  Finally, proof that I wasn’t going crazy.  That I wasn’t overly sensitive, make-believing sensations, or being a hypochondriac.  I’m not crazy!!! 

At least not about how my body feels and is behaving.   😉