Bad to the bone

Well, I am ALIVE even after i thought I had died after my bone marrow biopsy.  Everyone following this blog knows that I have had EVERY SINGLE test under the sun and I have a pretty high tolerance for pain so for me to say that this test HURT LIKE NOTHING I HAVE EVER FELT, I am not being a drama queen.  Why doctors think you should be awake for this test is TOTALLY BEYOND ME!!!!!  Needless to say, that is not going to my top 5,00,000 things to do! LOL. 

Now, we wait…………………………………………….  Results should be in this week or next week so I will keep you all posted.  I have started swelling a lot in my belly which is not so much fun but I enjoy getting the look from people like, “aawww, shes so cute pregnant”.. LOLOLOL!!  Its the least I can do to smile at my current plight.  Have a good day all.

xoxo – Ness

Let’s make a plan.

Hi everyone.  I am not sure if you are all still following this blog but if you are, know that I am still keeping all my close and loved ones informed of what is going on. 

I met with my internist today and the rest of my medical team (feel like I live in Grey’s Anatomy) and we should have a full plan on all things we are chasing on Monday.  All the specialist are getting all the reports from Mayo and getting ready to pick up where they left off.  More tests and such will be done so stay tuned.  It is exciting but of course, I HAVE ZERO patience so I want it all to HURRY up and start but, its all in God’s time. 

Tomorrow I head to MD Anderson for a bone marrow biopsy and aspiration and consult with my Hematologist.  I am a little nervous since I have never had this done and the sound of “bone marrow” makes me queasy. LOL.  Thankfully, my hubby will be there with me so that is good.  I did call my mother in law (a nurse) and asked her to shoot straight with me and tell me if it would hurt and she glady provided details.. LOL. Shouts out to my SUEGRA!!

I will update you all and let you know how I am doing.  I hope to get home as soon as I can and rest all weekend and hopefully return to work. 

Hugs-Ness

The Butterfly is home..

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I am finally home and back to all my loved ones.  My journey taught me so much about myself.  I found strength that I didnt know I had and faith that I didnt realize was so strong.  Being away also made me appreciate the life I had here.  I have so much to be grateful for and with this ephiany, I plan to live my life to the fullest every single day. 

So as you all know, my disease is Systemic Mastocytosis.  I have already begun the process of seeking specialist in the area to see me.  I hope to get into MD Anderson soon as one of the board members of the Mastocytosis Society practices here.  Please dont let the name “MD Anderson” scare you.  Because this is a disease of the blood, it is imperative that we take a more aggressive approach to keep it at bay.  I am going to keep blogging so that you all can see how my progress is going. 

Again, I thank you all for your prayers and thoughts and know that I am ready to fight this with everything I have and I will succeed. 

Love – Vee

I’m coming home…. Tell the world I’m coming home…!!!

Today was my results appointment with my doctor and we were not sure what info we were going to get BUT, thank the Lord, Mayo Clinic has found the issue.  I have Mastocytosis.  Only 200,000 people have this in the US have it which for those of you who know me would MAKE SENSE THAT I WOULD HAVE IT. LOLOL.  It is rare but none the less, it is treatable.  I have never had such relief sitting in a doctors office and then have them say, “This is what you have and YOU ARENT CRAZY” LOLOLO!!  I came out of the office (almost shouting), “YES!!! I have a disease!!!”  I am so happy right now I cannot even describe it. 

Thank you to everyone for their thoughts, prayers and sentiments as I have taken this journey.  I cannot wait to see everyone in Texas but I know that I could not have done this without my family (the Bullocks) here locally.  Having them here made us feel like we were home. 

Most importantly, I need to thank my father.  If it wasnt for his “gentle nudge” to get out here, I wouldnt have this closure in my life.  He has kept me strong and steadfast and now that I have this answer, I will be strong and steadfast in my work. 

I AM COMING HOME!!!!  Look out Texas!! 

The longest 2 days of my life….

Evening all!!  MRI went well.  Lots of holding my breath and focusing on not FREAKING OUT IN THAT TUBE.  They had me slightly sedated so that helped.  I hate ENCLOSED spaces!!  I am still struggling with pain today from the test yesterday but I am good.  I am back at the hotel and resting.  Tomorrow I have another appointment to discuss treatment options so I will keep you all posted. 

Hugs! V

It’s me..

Sorry you all didnt get to read a comical “after anesthesia” post but I was barely able to walk much less write my blog once I got back to the hotel but my AMAZING mom was able to post for me so you could at least know I got back okay.  And when I say AMAZING, I am not exaggerating. She had to literally help me brush my teeth from how out of it I was.  She is AWESOME!!!

Yesterday was a MARATHON long day.  I was scheduled to go into to my endoscopy at 2 but because of an emergency, it got pushed back to 4:00.  Once I got in there, there was some issues with my IV so they had to redo the entire thing which was comical to me but once that medication went in, it was burning like acid was going through my veins.  They kept saying to hold on for a few more seconds bc I would knock out shortly.  Those 20 seconds of pain in my hand seemed to of lasted a LIFETIME!!!!  The last time I saw the clock was around 4:30 and the next thing I remember is waking up in a lot of pain and crying for my mom (yes, I am 31 years old and cried from pain and asked for my mom).  The procedure went well but there were a number of biopsies done and they also resected and retrieved polyps frpm my stomach.  I should have all biopsies back tomorrow.  The doctor also found a new treatment for my esophagus disease which will be a steriod ingested cocktail that wont bother or hurt me systemically.  That was great news to hear!!  We came here for alternative treatments to help control my esophagus better and we have it.  I am very excited!! 

Today, I am heading to do a renal study at 8:30 am and then my MRI at 12:00 of my abodmen and liver which they are knocking me out again for as it is going to be longer than normal and I have a little trouble in enclosed spaces.  I didnt sleep at all last night from the pain and discomfort so another medically induced nap sounds good to me. LOL.

See you when I wake up. xoxo – Nessa 

Puzzle in the desert……… hehe :-)

Today I saw the kidney doctor and the words out of his mouth were, “I am stumped”. LOL!  (Stumping the Mayo Clinic was #3 on my “bucket list” so CHECK) LOLOLOL!!!

Thank the Lord my kidney functions came back good and I do not need a biopsy.  They are going to do an in depth kidney study that is done over 3 hours after a shot and then they tests the kidney function.  He also asked if I had been subjected to asbestos or lead (for some reason he looked at my mom for that, LOL) or had traveled out of a foreign country so that had me smile to say, “Ummm, no”.  So, the good news is that my kidneys are functioning and working!  Had more lab work given and have to do another 24 hour urine study but more in depth.  He just kept telling me over and over “you shouldnt have this go one like this and that if it was a real kidney disease, it wouldnt come back like this”…. The doctor also feels like this can be some form of a “reaction” that I am having to “something” that causes my heart or my kidneys to not work correctly which cause the fluid to back up in my tissue.  He also felt this was something that wouldnt stick with me for a long time and would eventually go away on its own.  That was for sure comforting.  He also up’ed my levels of Synthroid to help level me out more.  He did rule that out as being a reason for the swelling. 

Tomorrow’s schedule is a bit more laid back and requires me to just sleep which I AM GOOD with!  I have to be at the hospital to register for my upper endoscopy and the procedure will start at 2:00 pm (4:00 pm Houston time).  I should be out of the procedure and back home by 4:00 (6:00 pm Houston, TX) sooooo my post might be loopy or highly intelligent based on how much anesthesia they give me so TUNE IN to see how I post.  LOL.

Thank you again for all your thoughts and continued prayers.  Miss everyone! – Vee

Starting a new week….

We have had a wonderful weekend in Phoenix/Scottsdale, AZ.  After spending our Saturday with family and a Sunday at the day spa, we are getting ready for bed to start a new week at Mayo.  My appt is at 1:00 with the kidney specialist and we will be getting test results from labwork done last week.  I left Houston with some kidney issues, however we are hopeful that tomorrow comes with some answers and a good plan of action. 

I will keep you all updated.

xoxo – V

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