6.26.2010

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. 


30 comments:

Army wife said...

Hi, I'm somewhat of a new follower, but I just wanted to say that you are in my thoughts and prayers. My father was diagnosed with Non-hodgkins lymphoma a few years back,and as of now he has been over 2 years cancer free (remission). But that was a rough time for me, and our family. But I strongly believe in the power of prayer and faith. It seems like you are a strong believer as well. Stay strong, I know in the beginning when all you want are answer is the worst time, but keep your faith and everything will work out.
Thinking of you!!

♥Miss Brittney♥ said...

Ohh Hun, I am so sorry. Reading posts like this breaks my heart, but I am amazed at how much of a strong and beautiful person you are! You're faith and trust in the Lord is inspiring. You will definitely be in my thoughts and prayers, and I hope everything goes well with the Doctors and such. Keep your head up and a smile on your face! You're amazing!!! :) Sending hugs your way!

Team Mama said...

Much much much love!

Jessica @ {Mis}Adventures of an Army Wife said...

*Hugs* Sending prayers your way.

Wife on the Roller Coaster said...

Oh girl, I had no idea you were going through such intense physical issues. You will be in my thoughts and prayers. Please keep us posted about what you hear.

I'm so glad that you're such a positive person and that you have such an amazing husband. Take care of yourself. Hugs your way. Email me if you feel like venting.

BryceandWhit said...

My thoughts and prayers are with you and I hope your Dr. appt goes good... HUGS

Mel said...

I am thinking about you so, so much. These things are so hard and I am sorry that you are dealing with them. On the other hand, it sounds like you have a wonderful husband and are very resilient yourself, both of which make these struggles easier.

I'm sending prayers and hugs your way.

Carmen said...

My lovely Mrs. S,

I can truly understand what you are going through (well, not exactly but pretty close) because I too have many health issues. But, this isn't about me, this is about you lovely lady. =)

Anyway, please keep me updated. I had no idea that you were dealing with so many health issues and I would love to help you in anyway I can. Please feel free to chat with me if you ever want to. I'm always here for ya! I'm send you prayers and lots of love. I'm glad that Mr. Superman is there for you through all this. It's always great to have a great support. Love ya darlin'!

Expat Girl said...

You are strong and beautiful, thinking of you and praying for you xoxo

Jordan Streetman said...

I had an appointment with the oncologist this past week it was so nerve racking to go into a huge building that said "Cancer Center".
Hugs and prayers coming your way.

Allie said...

I know I have not been following your blog too long but your post really touched me. I too have/had a lot of weird health issues and waiting for answers is so incredibly frustrating. I will be keeping you in my prayers and I hope your faith carries you far. I know I'd be lost without mine!

jack+alli said...

rachelle, i had no idea. you are tough and you really have such a positive and upbeat attitude! that's so great you have such a supportive husband! unfortunately we sometimes don't know why we have to go through the things we do, but we're better because of them!
xoxo

Alia said...

Your faith in the Lord is incredible! I'll keep you in prayer this week :)

Ashlee G. said...

my sweet rachelle.

my heart is just so heavy from reading that. this is just another reason why you are my hero. you should write a book. your strenth, courage and faith is something to be admired and im so glad to call you my friend.

plenty of love and prayers coming your way.


love ya!

SpitFire said...

Hey sweetie..I'm glad you're finally getting some answers. I think that's always the most frustrating part..is the big looming "what's wrong?" At least it is for me.

Skinnie Piggie said...

Prayers coming your way!

L.C. said...

Oh gorgeous! I really hope you get some answers too!! I will be praying for you!! Stay strong and keep that lovely sense of humor with you :)

Catherine said...

Sending hugs and prayers your way! Keep your chin up.

Jordan said...

hi pretty lady!
OK, so i read this and the nurse in me kicked in and I have a couple things to tell you. You may already know some of these but I thought I'd bug you because reading all of this makes me worried for you.
First off: these constant nosebleeds worry me. For some reason you may be over-coagulating (lamens terms- your blood may be too thin) read up on what these labs are and bring the levels with you when you go to the doctors office. Make sure and ask your Dr. what your results are of these when you get your labs back
Labs:
INR, PTT, PT, Platelets, Hemoglobin
My guess is that your blood may be too thin which is why you may be bleeding so freely. This is NOT something you want to have a problem with if you already have issues with anemia. Basically because your blood count is already low due to the anemia, you dont want it to be thinner, causing you to bleed, causing you to loose more blood than you already had with the anemia.
Second,
The nurse and info you have read is absolutely right in saying that you do have a very high chance of other co-morbidities (other diseases such as heart failure, etc.) This doesnt mean you have to! The best thing you can do for yourself is keep yourself healthy!
Dont let yourself be overweight, eat the right foods, exercise, dont smoke and check your blood sugar frequently(which im sure you already do bc of your hypoglycemia). All of these healthy living choices can help you to make sure none of these other diseases can ever be a problem for you.

and third,
Just because you have all of this scary information right now DOES not mean you cannot get over this and lead a long long long healthy life. You have been through a lot but you can get through this!

OK...sorry for writing a novel or telling you things you may already know. If you need anything or have any questions at all just email me jventeicher13@gmail.com

The Sawyer Bunch said...

I am so very sorry to hear about your struggles. This post nearly brought me to tears. I can't believe you're dealing with all of this and have such a great attitude. You are an amazing strong woman. Your faith in Heavenly Father is remarkable. He will bless you for your faithfulness. Prayers coming your way. ((hugs))

Bonnie said...

I hope you're ok and will be ok!!!

Marissa said...

I didn't know that it was so bad! Sending prayer and thoughts your way!

Happy Life As An Army Wife said...

I'm praying for you, beautiful girl. You're a tough cookie and I know this can't be easy. I have RSD and I know what it's like to go for years without answers. I also know what it feels like to be in constant pain. Nothing can really make you feel better sometimes, so I won't try, but just know there are so many people who love and are praying for you. Heavenly Father is ALWAYS there for you.

Dave and Ashley said...

((HUGS))... hang in there! you are such a strong, beautiful woman! know that people out in this big, big world are thinking of and love you!

Miss E said...

I will be praying for you! I hope that you are able to get the answers that you need!

Mrs. Ma'am said...

Girl, you are strong, absolutely beautiful, and have a wonderful support group. You are definitely surrounded by much love! You are in my thoughts and prayers. Be sure to keep us updated!

Ashley said...

You are in my thoughts and prayers!! I know your positive attitude will beat anything that comes your way!! Stay strong and remember you always have your husband when it gets tough! HUGS!!!

KelseyC said...

Oh girl. You are one of the strongest people I know on here. I agree with Mr. Superman. You're going to be fine...you're strong, resilient and you will bounce back from this! God has a plan for you and this is just a minor bump in the road. I'm sending all my good thoughts your way!!

Star Spangled said...

I'm so sorry to hear that you are having to go through all this. You have amazing strength and your faith is inspiring. I will be praying for you too! :)

Amelia Kate said...

Ra-freaking-chelle.
When were you diagnosed?
Why havent i been informed?
And dont go sitting there saying out loud, it wasnt a big deal Mill. No need to freak out. Seriously, its not that big of a deal.... and continue on if your
non-chalant ways of life.

I love you, and you are one of my best friends...and I know that I am one of yours. Yes the self assurance is pouring out of me right now. You live half way across the freaking country, with your new life and friends and support group, but please dont forget about me here! I love you, and want to keep up to date on whats going on with you...and not just with reading your blog!

PS...I am with Cody. I'll kill you if you call me with news of death. No cool. Stay freaking healthy. And stop breaking! ILOVEYOU!