Tuesday, May 17, 2011

Rest in Peace

I found out a friend of mine died on Friday. She was only 38. She was so young. She died in her sleep. That's all I know.

It was shocking news and completely unexpected. I wasn't prepared for it at all. It aaffected me all weekend and I would find myself weeping for no reason out of nowhere.

The thing is, we weren't especially close. She was almost an acquaintance. I say friend because if she needed me for something I would be there. She invited me to parties (that I never attended....) and she was nice.

Maybe part of it is a wake up call to the reality that People Die.

People Die everyday... we just don't know it because we are busy living our lives, until one day you make a call and ask for Brandy and find out she has died.

Perhaps I feel guilty for all of the invites that were unattended? Maybe I wised I would have gotten to know her better. Hope that she knew I liked her. Hope that she was happy when she passed. Was she happy the last time I saw her?

So many things swirl around in your mind after someone passes... and because she wasn't a close friend - I think what it is you are supposed to feel becomes a bit confusing.

I feel better today. It is Tuesday but I had a rough weekend. I found myself talking to her... desperately hoping she was happy and in a good place. Which is strange because we didn't talk much when she was alive. Death and mourning is a funny thing.

I think I am still a tad numb about it. I think it really hit me in a deep place and perhaps the timing of the news wasn't the best. I am alone here in my "Drop House" with just my mattress, TV and Treadmill awaiting school to be over so my son and I can join my husband in Louisiana. I think loneliness magnifies everything anyway.... of course there were other drama's this weekend that aren't worth even mentioning which I sure made absorbing the information even more difficult. But I still take pause every once in a while and find myself so sad at how young she was.

Perhaps this is because she is close to my age. Am I at the age that peers begin to die? Was she sick too? Maybe it is just the reminder of the obvious - People Die. Or maybe this is just normal good old fashioned mourning of a life lost? What are the rules? Am I allowed to mourn someone I wasn't that close to, what feeling of loss is justified in this situation...? Silly things. A beautiful young life was lost and it is tragic.

She is not my first friend to die. My dear friend Rico died 12 years ago. I loved him so deeply.

His death was a shock too. His mom called to tell me. She then sent me the photos of the Hawaiian memorial of his life. I was younger then, so it hit me differently. We were close, so my mourning and the loss that I felt seemed valid. He was Rico. My Rico... The Rico I would go visit in Hawaii for weeks at a time . We would island hop to see my brother. The Rico that when his Malaria would flare, it was me he would ask for. During his flares, his mom would call ME to talk to him to make him feel better - so was the loss I felt then more justified?

Rico was my world traveler. My free spirit soul mate. My Hawaiin Surfer. His mom was an anthropologist - archaeologist so he lived everywhere growing up. She did what I wanted to do had I not taken the teenage pregnancy route - lol. He lived in Niece... that is where he got his malaria. My silly beautiful amazing Rico who I still love SO DEEPLY to this day and miss so much! Another peice of my puzzle that is missing.

So loss and death are not foreign to me... but this one hit home in a far different place and where it hit, I cannot seem to find or figure out. I wonder if my own mortality has something to do with it. My first death and loss since my diagnosis of the Big S? My first loss at my new older age. I don't know the answers to the questions. I just kind of keep pondering them... but like I said - it is now Tuesday and it is easier today.

My heart bleeds for her family. And I hope that when I did (and/or do) talk to Brandy that she can here me and know I thought she was great! Rest in Peace Brandy Reed.


Rico - Classic Form

My Rico - My Clown

Rest in Peace Friends..... I love you Rico!

Carafate is GREAT




Hello There ~

I was thinking about this since I packed and haven't had a chance to write about it - so here it goes......Carafate is Great!

No not just a rhyme... a reality.

It is an amazing medication if you have ANY Gastroparesis or GERD due to The Big S (or anything else for that matter) that affects your tummy or your ability to eat.

Carafate is Old School so the pharmacy may need to order it for you, but it is worth it. And the good news, it is so old school that ins does pay for it and it's cheap.

It is a liquid and it basically "coats" your tummy. Kind of like Magic Shell on ice cream (yum!)

It's like a life saving, amazing, impenetrable coating on your tummy that lets you eat. Hallelujah!

It is not like Pepto or Pepcid.... it is truly a coating for esophagus and stomach that is taken half an hour before you eat and then after if you wish and it alleviates any pain associated with eating, any nausea associated with GP food stalls, or any reflux. It is great and it really does work.

I had a horrible bout of GP with some severe GERD and wasn't able to eat a thing. I mean literally I had GP so bad that I would drink water, bend over and up and out would come the water. Everything was just pooling in my tummy which caused erosive gastropathy and GERD burning symptoms.

My MD prescribed this and advised it was a little pain in the butt to have to schedule eating....but it worked, so I tried it and it was a life saver. I cannot recommend it enough if you suffer with anything of the sort.

Magic Shell for the Tummy!!

I packed my bottle -and the bottle is huge - that is why I have been thinking about it and what prompted me to write. I have had a few rough days with the old GERD and used the Pepcid, but its not the same.

Anyway - Please spread the word. Its great stuff!

Thanks for reading

Love

Stacie

Saturday, May 7, 2011

Labs and Such.......

Hello Y'all !!     (getting my Louisiana on!)

So, I had "Dr. Feelgood" order some labs for me before I leave for La. I love their office. They are SO nice, and he is a really great guy - hence the reason I can requests labs w/o a visit and/or co-pay.

Well, I got them back yesterday and...well not so good. Not so bad, but not so good, nonetheless.

If you have any type of disease or illness I urge you to always ask for your records and copies of your labs...You own them. They are YOURS. And by keeping them, you can see a pattern that your MDs may miss, especially if you see more than one. As an example - you can see tests that are recurrently abnormal, rising, off and on and you can gauge your symptoms and flares to your labs. It is a great help - especially with the "reactive markers" !!  ; - D But anyway, I guess I will take my Sally Field hat off and step down from my soap box

So back to the lab results.

As you know, I have something called a "Monoclonal Gammopathy" which put simply is an abnormal protein circulating in my blood. A lot like the antibodies with regard to my autoimmune disease - only these are proteins in the blood cell/plasma. They should not be there. Apparently this is a bad thing... which in turn leads to a lifetime of oncology-hematology follow up, as these gammopathies can and do turn into cancer.

I have written about it in a previous blog - so I don't want to bore you too much... but mine is an IgG Kappa type with an increasing M-spike - so my particular gammopathy is considered a "Smoldering Multiple Myeloma" or "Cancer in Situ" - which is why I have to have that M-spike monitored every 3 months.  Good Times, right!

I have an appoint with an oncologist on May 19th to follow up and have that M-spike followed (along with something called plasma chain proteins), but previous to that appointment I had my Dr. Feelgood labs come back. Well..... turns out my White Blood Cells and Neutrophils are still elevated. They have been so since January. Not a good thing ever, but especially when you have this smoldering thing in the back of your mind all the time. Along with the WBC & Neutrophils (which are both part of the CBC = Complete Blood Count) - Something called a C3 Complement came back elevated as well.

The C3 Complement is something called an "Acute Phase Reactant", meaning, it becomes elevated when there is an acute inflammation within the body. Well, that doesn't sound too out of the question, as with an autoimmune disease you have inflammation within your body, right?

Well that is where it gets a tad tricky.... When your C3 is chronically elevated, it becomes a tad more worrisome, as it then reads as a cancer marker. Nice! The best way to describe it is - if you have a flare up and have an "Acute (meaning right now) inflammation" happening it works as an inflammatory marker - but if that same test that is supposed to only react during "Acute" inflammation - keeps reacting & coming up - then it shows there is a continuous destruction of cells happening and it is looked at differently.

So, at this point I guess I am a tad intrigued by the continued elevated White Cells, Neutrophils and C3 due to the fact that I have this M-spike - which when it boils down to simply put - IS a cancer marker. I am sure most laymen know that a continued elevation OR decrease of the white cells means something is happening - so I am a little more excited than usual to see the oncologist this month.

Along with the elevations above, I also had the regular abnormals of the "usual suspects" - Positive ANA, Positive elevated Centromere antibody and a slight positive of the RF. So - it seems that the Big S is continuing along as usual - which was no surprise.

I go to the onco on May 19th and at that time I have no doubt she will order the bone marrow biopsy - as it is truly the only way to make sure the elevations are NOT origination within the bone marrow. I think everything is fine, i really do.... as I remember reading a paper (yes, still a dork and still read studies for fun!) that talked about Rheumatoid Arthritis causing a chronic inflammation of WBC and C3, and with that slight elevation of the RF - I think I may be heading that way into an overlap - which - Hellz yea I'll take RA over MM anytime ;- )

Now if I may be a nerd one more time (okay, well I can't guarantee it will only be one more time - indulge me) I again truly think that the Monoclonal Gammopathy and Autoimmune disease are directly related, especially with Scleroderma Type - check it - Scleroderma is a "connective tissue" disease and what is blood? Well blood is a liquid "connective tissue" so?

Which leads me to my next soap box. Warning: High Horse again:
If you have an autoimmune disease, ask your doc if he/she will run an SPEP.
It is a Serum Protein Electrophoresis which analyzes the protein in your cells. It can't hurt and it will only be one less thing to worry about, right?

So some labs to ask about:
SPEP
C3 & C4 Complement
CBC
ANA with reflex titer and complement antibodies (anti-centromere, anti-jo, anti-mi2, smith, etc)
Aldolase
BNP
CMP
CK
LDH
RF
RNP

As always - wishing you all well & hoping you are enjoying this beautiful weekend.

Peace and Love ~

Stacie