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.  😉

Advertisements

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.   😉