Something a Little More Serious

Sorry folks, not too much humor was found in our house this week so I have bowed out of Pillow Talk. Nothing horrible has happened. Its just been one of those weeks that dragged, stressed, and exhausted. 

I know I've been needing to update on my health and such, mostly regarding my HHT but I just barely got around to calling in all my referrals. For those who don't know, I was diagnosed with a blood disease. Its called hereditary hemorrhagic telangiectasia (HHT) and it used to be called Osler-Weber-Rendu syndrome. For most people it doesn't really affect them but for me, it has created a lot of health issues, complications, and is progressively getting worse.

I meet with my new Hematologist/Oncologist on Monday. I'm apprehensive about walking into the cancer center. I know there are so many people in the world suffering terribly and who are so ill that even just contemplating walking in there with a head full of hair and in a relatively healthy state (in comparison) makes me feel overwhelmingly guilty. 

I had a long phone conversation yesterday with his head nurse and someone who will be involved in my care. She was calling to get as much information and medical history as possible. Between my anemia, hypoglycemia, and HHT she noted I'll be a handful. Upon hearing about my stomach issues, cholecystectomy, partial appendectomy, laparoscopies, and my misscarriages and ectopic pregnancy she let out a low whistle. 

We talked about infertility, the pain -physical and emotional- that comes from losing precious babies, and the struggle to balance life after gaining the knowledge of, "You'll never have kids." She was sweet and sincere. She said, "There are other ways to have kids." I know. We know. 

She then asked for family history of cancer and heart problems in my immediate blood relatives extending to grand parents and their siblings. She first asked if there is any history of skin cancer. Yes. Breast cancer? Yes. Lung cancer? Yes. Heart attack? Yes. Heart murmur? Yes. I told her my paternal grandfather passed away with no warning while walking out of the gym. We speculate a brain aneurism or heart failure. I told her my paternal grandmother's brother has had cancer but I wasn't sure which type. My maternal grandfather had Parkinson's disease. I let her know I may be surgical again but won't find out until I see my OB in July. She asked if I knew much about HHT. I told her I had just done my own internet research. My dad and his sister have varying degrees and my dad hasn't really been affected since he was a child. I let her know I have never spoken with my grandmother about it and didn't really know anything other than my aunt was able to tell me. She questioned me about my symptoms and asked if the degree of severity has increased or decreased over time. Definitely increased. Nosebleeds every day. If I'm lucky I'll only have one a day and it'll only last 15 minutes. I cough up large blood clots and experience vertigo daily. I pass out. Luckily I have never hit my head. Mr. Superman is always there to catch me. My migraines never fail to make me feel as if my head is in a vice grip or as if an anvil has just dropped onto it. The lights and sounds make me nauseous but my head ct came back completely clean. No medication has ever worked. I'm looking forward to getting ANSWERS. 

She let me know that its something the doctor would talk with me about but just from hearing what I had to say, seeing my labs, and reading reports from past doctors as well as my current PA's on base, my degree of HHT indicates my increased probability and risk of liver failure and/or liver cancer, kidney failure, heart disease and/or heart failure as well as my blood cells doing a bunk, mutating, and shutting down my organs. I had read about all of this but didn't ever think too much about it. If my HHT were to continue to worsen, since their is no cure or really any treatment, this stuff usually hits early-mid thirties. 

Last night Mr. Superman and I talked. I apologized for being so broken. I then asked if he ever worried. "Not really. Well, not yet. You're tough. You're resilient. You always bounce back. Nothing keeps you down for too long. Plus you know I'd kill you if you died." I promised I wouldn't die until we have a child. It was a serious talk but not TOO serious. We'll find out a whole lot more on Monday and see what and if anything can be done. 

I also have incredible faith in my Heavenly Father. He will never give me more than I can handle. I trust and believe in him and the path he has set before me. Life is life no matter what stage or realm it is in. Complaining does nothing but make the situation harder. I pray and have others who pray daily on my behalf. I have people conduct special fasts and place my name in the temple. I am surrounded by so much love and so much faith that it would be tantamount to stupidity and ignorance to not trust, know, and believe in Him. I'm not terribly worried either. 

Come what may and love it.