shellakers’ blog

I don't really know what to say, it's been so long.  I've just only now read all of the well wishes and prayers that all of you have sent me through some of my cousin Netta's posts and my daughter Danielle.  The pm's were amazing and I wish I had the energy to respond to everyone the way that I should. 

Here's the story in a nutshell.  I was released from the hospital after my 3rd surgery (where they took out more of my stomach and now it's the size of a walnut).  It was on my birthday, April 10.  On April 10 my stomach perforated at home.  I'm not sure what happened.  I'm so used to pain that I didn't know it was really any different than my regular pain so I waited almost too long to get to the hospital.  I waited hours.  By the time I got back there, my body was racked with poison and I was dying.  The surgeon knew I wouldn't live without surgery but he also didn't think I'd live with it.  It had only been 10 days since my last surgery and my insides were like the consistency of gum.  He didn't think I could be closed back up successfully.  There wasn't a lot of hope for me, from what I understand.  Everyone was trying to get used to the idea that I would die.

I don't know why God chose me to live.  I don't know why I'm so blessed.  All of your prayers and all of my family and friends prayers were answered.  I'm really not supposed to be here.  I'm humbled by the outpouring of love from all of you.  Thank you just isn't enough but I don't have any other words. 

I've been out of the hospital for a week now.  Today is the first day I've felt like being on the computer.  I promise to keep up with everyone as much as I can now.  I've missed all of you so much and I just can't wait to see what's going on with you.  I trust that it's been good (or at least I'm praying it's been a good life for all of you).  I love you all, and again, THANK YOU and HUGE ((HUGS))

It's Tuesday, I know, I know:-)

S5002001

1 comment

In keeping with current events, I've decided to bring you ********drumroll please********    - Me and my drug allergy bracelet.  Kind of....  different:-)

Hey!  Sorry I haven't been able to talk to all of you lately.  I just read all of the comments that everyone sent with my last post and I wanted to let everyone know that your prayers worked and were very badly needed.  I don't know why I'm here or why I'm healing the way that I am.  I can't make this a very long post but I wanted to at least try to tell you how much you did for me.  It looks like, if all keeps going well, I might get to go home Wednesday, were I'll be around here so much more.  I'll also get to feel and be there in this beautiful SPRING that we're all happening, instead of being wheeled in a chair around the hospital grounds!  Although, Hotel, St. Anthony's DOES have some mighty fine daffodills!  hehehe

I went into surgery last Thursday.  I haven't even asked how many hours it took.  MANY is what I'm guessing.  The surgery went well.  I have the teeniest part of what used to be my stomach.  All the scar tissue and ulcerated material have been cut away.  Good job.  The surgery is never the problem with me.  The problem is recovery.  I can't quote you on this, but I am told by a reliable source (my mom) that I needed the rapid response team to bring me out of convulsions from a severe drug reaction.  I call it a LACK OF DRUG reaction.  I felt every nerve in my body EXPLODE from pain and every bone seemed to come alive - racked with pain.  It wasn't pretty and nothing worked.  I'm allergic to most of the good drugs, like morphine or anything like morphine.  It was like trying to recovery (on the first day out of surgery) with nothing more than a tylenol!  Was I praying to die?  Um, yes.  I would have paid my mom or day to kill me those few days.  I let them know as much.  I don't know how my mom was able to watch me scream in pain and she still has some of her mind.  She was here alone with me that night.  Ben had a high fever and the flu.  He was able to be here after Mom and Amber put in their time with the hard headed patient (me). 

I guess I'm recovering better than they've ever seen anyone recover from this type surgery.  It's amazing.  It also still hurts but a little mor dealable, THANK YOU JESUS!  lol  I'm still here and I'll be home soon.  This week, I'm fairly certain.

All of your comments made me cry.  That isn't a lie.  Maybe I'm lacking sleep and need pain meds but I have the best friends on vox and probably in the world!  (((((HUGS)))))

Amber anad my family thank everyone for their prayers too.  (She wanted me to mention that she was thankful to all of you).

I'm very sleepy now so if my spelling makes you have hot flashes or my grammer send you into panic attacks, I apologize in advance.  I go into surgery tomorrow morning at 9:30 am.  The surgeon and I have decided to only take a portion of my stomach out, as opposed to the whole entire stomach.  He'll take out the ulcers and the scar tissue also,  This way, if there's any chance for my stomach to heal, it still can.  He believes in being conservative with his approach and I appreciate that.  The downside of this approach is that I can start growing ulcers immediately, like I did this last time and he may have to eventually take out the whole stomach.  The bright side of this is that my size 5 jeans are becoming a realistic dream!  lol

Anyway, before the surgery, I'll be tested for pancriatic cancer.  Apparently pancreatic tumors are responsible for ulcers that won't heal either.  If they find tumors, surgery will be postponed until there is a new plan of attack.

Tomorrow, I'm going to need all those prayers that you've been so generous with.  I'm not so afraid.  I know what to expect even though this surgery is more complex than the last 2 were.  The recovery time doe make me a little nervous.  It hurts like a B!#$%!  I love you guys!

Today, one of my nurses told me that I had such a good attitude about everything that I was going through.  She said that I should start a support group for women who are going through similar issues, when I got done being sick!  lol  I told her that I don't think I'd be good at that because I don't have patience with people who whine and a lot of times, I hear women (and men) whine about their situations instead of trying to make the best of it.  The nurse said that that was why I would be good at it.  She thought I could bring things into perspective with other people.  I have the attitude that my illness is just a "thing".  It's really the way that I feel.  We deal with what we're given and there really isn't a LOT of time to whine and feel sorry for myself.  This is just the hand that I was dealt.  "If not me, then who else", is kind of my motto.  My bad ass attitude got put into place today.

Right after I announced how little tolorance I had with others, I went outside to smoke.  While outside, I met a woman about my age.  She'd snuck out also.  We started talking and I learned that she was terrified because the doctors thought she had lung cancer.  Her story started 5 years ago when she went to the doctor because she'd just been so tired.  She was usually a high energy person.  She thought maybe she was low on iron or something like that.  It ends up that she had hepatitus C, the deadly kind.  They'd given her 10 years to live 5 years ago.  More currently, Thursday, she went to the ER because she couldn't get rid of the flu.  It just wasn't going away.  They ran some tests and so far they think she has lung cancer.  Tomorrow, they'll do a scope on her to biopsy.  If the scope doesn't work, they'll cut her chest open to biopsy that way.  WOW!  Instantly, I knew that God was reminding me that I didn't know how other people felt.  I might have felt like this woman was whining because she went to the ER with flu symptoms.  God was trying to put me in my place.  I prayed for her.

On the way back up to my room, some very sad man held the elevator open for me.  He got off on the same floor as I did which is the cancer floor.  Out of the blue, he says "So this is the BAD floor, isn't it?".  I said that I'd heard stories of it being the BAD floor (meaning cancer floor) but not everyone had cancer that was on this floor.  He said that the doctors just called him because his 40 year old sister who has liver cancer had MAYBE 72 hours to live.  He started crying.  Now I'm thinking to myself "Ok God.  I get it.  I should have NEVER assumed that everyone besides me was a whiner".  I am humbled.

So I'm in the emergency room, which is where I spend most of my life these days.  I was sent directly here because I'm losing so much blood again today.  The next step will be to admit me but I still need to go through the process.  There's at least a 3 hour wait but they'll get me in sooner because of the critical nature of my reason to be here, or so they say.

I've done this so much I could do it with my eyes closed.  I know what's about to happen.  There's nothing for me to do except to watch the people around me.  They're getting on my nerves, btw...  The things that people consider an emergency amazes me.  Because of them, this emergency room stays packed.  There's a grandma who just rushed in with her 2 year old grandbaby.  The mother was already here waiting for the Grandma to get here with her child.  She needed a nebulizer treatment (the mother) because of her asthma.  This could be serious, I know so I don't begrudge her much.  The thing that gets on my nerves is that this 2 year old baby stopped eating and drinking a couple of hours ago.  THIS, my friends, is the emergency with this family.  I don't know about any of you but my kids, quite frequently, stop eating and drinking for a few hours at a time.  The Grandma is shouting at the intake nurse that her baby needs to be seen now.  I'm hearing the intake nurse ask about this baby's medical history.  I'm SURE there must be a medical history for all this drama.  There is not.  They didn't even call the pediatician before they came here because they just knew there's something terribly wrong.  Meanwhile the baby is running around acting like a normal 2 year old.  She' yelling and playing and running.  She doesn't want to be held by the grandma.  The mom of the baby looks like she's about 15!  She has nothing much to do with the situation except to yell at the triage nurse that her nebulizer treatment isn't working.  She YELLED this so I'm guessing that the nebulizer did indeed work.

The next thing on this family's agenda is to start shouting back and forth to each other, "Mom, did you call Matthew?".  I'm assuming Matthew is the dad.  Matthew has indeed been called and he's taking off work to come into the emergency for the big family drama.  The Grandfather and the great aunt have been called too.  Everyone will be here soon.  Now the Grandma hass decided that her knee is in terrible pain because she had to walk across the parking lot holding the 2 year old.  She may need to be seen too, she tells the intake nurse.  Before she, too, can be triaged, she called her son to bring her som Naproxen.  She's very loud and sitting across from me so I can hear her conversation.  "You may need to take off work to go home and get my Naproxen.  My GD knee is KILLING me because I had to carry Autumn across the GD parking lot and I'm about to die now son".  Now she tells him there's no hurry but she's in so much pain that she doesn't know how much longer she can take it.  Nobody is watching the baby. 

All this because a 2 year old hasn't eaten or drank anything for a couple of hours?  I'm hoping that I'm missing something!  These things keep me occupied while I'm in here for my own 3 hour or so wait.  Maybe I'm getting bitter in my old age but these people stink AND they get on my nerves.  I'm wondering when they've had a bath last?  I can guarentee you it hasn't been within the past few days much less the pst few hours.  Blech.

First of all, I really just want to take a second to shout out to some of the wonderful people in my "hood.  One of the most special young women that I've been blessed to know, Adah, has gone out of her way to ask people to pray for me.  She must really have some pull around Vox and people have been coming out of the woodwork to say hello and to send prayers my way.  Adah, I want to thank you, from the bottom of my heart.  If you were here, I'd give you the biggest bear hug of your life!  To everyone of you who have been giving your time to pray for me, OMG!  Your prayers are working and I want to thank you all so much.  SO...   BIG virtual group hug to all of you.  I wish there was something more I could do to express my thankfulness.  I just hope you know that I really mean what I'm saying.  Your prayers aren't falling on deaf ears and they're NOT going unappreciated by me!  I love you guys.  I really feel like the most blessed and lucky person in the world.  I am certainly rich in the area of good friends:-)

Here's where we're at:  I was released from the hospital on Easter day because they could find no more veins to give me the two units of blood that I needed at that time.  They also needed to give me 3 consecutive units of iron because I was losing iron just as fast as they could put it in.  There was nobody in the hospital to put in a central line or a pic line like I needed.  I'd been asking for these more permanent lines since I was admitted but the nurses would not even ask the doctors because there was always a possibility that I would be released the next day.  Several days later, I was still being tortured with these idiots blowing up every good vein that I had.  I was finally told by a supervisor that I could yell and scream and threaten these bastards with the hospital administrator.  This is what I'll do from now on.  So, I got to go home because, either they discharged me or I was walking.  I'm getting mean now.  They let me go if I promissed to come back and get my blood the next day.

I came back on Monday.  My mom took off work to bring me back to the hospital.  I had to go to the "infusion center", where I was told that they couldn't even draw blood from me because my veins were so bad.  They work with a lot of cancer patience and people who are notorious for not having veins, and they are generally AT LEAST able to draw blood.  They couldn't on me so they tried to get me into the radiologist to do a pic line.  Because I was ONLY bleeding to death and nothing more, they wouldn't consider it an emergency and I had to go home and come back on Tuesday, which is today.  8:30 is when they told me to go to admitting to get this party started.  I showed up at admitting, Ben taking off work this time (because I'm too weak to drive), and they told me I was supposed to be here at 8:00.  It wasn't the hospital's problem that Mom and I were told wrong.  NOW I would have to be worked into their schedule and that meant that I might not be seen until 3:00 this afternoon.  I was more than a little pissed.  It takes more than the loss of blood to make me forget that I have a "temper".  At this point, I don't really know what to do because if I show them that I'm as mad as I really am, they could treat me worse and make me wait longer.  You just don't know how it will work out with these people.  I kept most of my cool.  I got my pic line within the hour.  It could have been SO MUCH WORSE!!!!!  Prayer answered.

It was explained to me that because blood takes 4 hours for each unit to process (that would be 8 hours for me), and iron takes 1 hour for 3 consecutive days, that I would be admitted so that they could moniter me and it would just be that much more simple.  I'm packed to stay.  Once I got down to the infusion center, they took my blood to see where I'm at today.  I DON'T NEED BLOOD!  My blood went up a whole point since Easter!  Prayer answered again!  I can just go home now and come back and get my iron for an hour every day.  Not bad eh?  God will only give us as much as we can take and I think he probably knew that I was getting redy to kill the nurses up on the "floors".  My doctors are such good doctors now and I feel so blessed to have them but they only work out of this hospital.  If it gets to the point where I'm feeling postal, I may have to switch doctors again just because I absolutely despise some of the floors they put me on in the hospital.  This last stay made me feel like I was in the nursing home.  One lesson I've learned is that if you ever have to go into the hospital for any reason, TRY to bring someone with you.  I watched some of these people who didn't have family their to back them up not ever get waited on by some nurses.  I wouldn't have gotten 1 single glass of water if it weren't for Ben or Amber or my mom.  The lady next to me wouldn't have gotten 1 single glass of water.  A volunteer changed my bed only 1 day.  I changed my bed the rest of the days.  The lady next to me laid in her own mess for about an hour before anyone would help her.  When they did help, the nurse gave the patient all the stuff to clean herself.  She was a 73 year old lady who was weak from loss of blood too.  They would NOT help her.  I called the nursing supervisor to complain for this lady.  We were given semi better nurses after that.

Where I'm at with the doctors:  I'm being told that because of almost 100% paralysis in my stomach, maybe the best way to permanently fix me is to completely remove my stomach.  I know I've said this before so I'm sorry if I'm boring anybody:-)  My ulcers are being caused from the food laying in my stomach, causing acid and eating holes.  If I had no stomach, this wouldn't happen.  They want to attatch my intestines to my esophagas.  Very little of your digestion happens in your stomach (even for normal people) anyway.  Your stomach just squishes up your food and technically, you can live without a stomach.  The quality of life wouldn't be as good but mine isn't great anyway.  I'm in the hospital every other week and my last major surgery that I wasn't supposed to live through just happened in August.  They think this might just fix me as best as I can be fixed.  The surgeon is going to a conference and will be presenting my case to other surgeons in order to get their input.

There is another option that I think I'm going to choose.  They can make another tube (for a total of 2 tubes) coming off the other side of my stomach.  They can cut away the damaged ulcerated tissure that won't heal with medication.  There is a POSSIBILITY that this might work.  They don't think so.  This is the general consensus of all of the doctors combined.  I think I'm going with this option because it leaves the possibility that I might be able to live a somewhat normal life.  They can always take out more stomach if this doesn't work but if they take out everything now, I'll never know if this could have worked.  To take out everything just seems so drastic.  Besides I want to give this new nutrition stuff that is supposed to rebuild cells, a chance to work.  Just maybe, with prayer, faith and a positive attitude it might work on me.  I'll never know if I let them take everything out right now.

The other positive thing that happened yesterday was that I signed up for disability.  There's almost no way that I won't get it (or so they say) with the amount of hospital records that they have on me.  I'll be getting back pay to 2006!  AND my kids will also get a little amount of money.  Hey!  Anything that we weren't expecting is better than nothing, right?  I never wanted to file because I couldn't get it through my head that I was REALLY disabled.  I think I'm accepting that, for at least a little while, I will be.  The good news is that I don't always have to claim disability.  I mean that if I ever feel good again, I can go back to work.  I guess I thought that once disabled, always disabled.  I just hate that label.  I'm just too proud for my own good.  So proud I'm actually stupid sometimes!  lol  I'll get my first check anywhere from June to August.  Great, huh?

AND another thing is that I took Savannah to get her permit yesterday and she passed!  She only missed one question.  She has a photographic memory so I was pretty sure that she would.  I also took her to open her first checking and savings account that she has control of.  I set up overdraft fee protection that won't come out of MY account too!  Yay me!  I guess I just feel like I need to get things in order in case something really does happen to me.  I know it's negative to actually think that way but to me, it's being realistic.  Even if nothing happens to me, I don't really have too many good days where I'm out of the hospital for very long, so I need to get as much done as I can while I can do it.

So there it is peeps!  Thank you all again and I love you all!!!!!!!!

Show us your favorite flower.

Nothing prettier in my mind than roses and lace.  It makes me feel lost in another time, where life was much softer and the detail is so much more intricate.

I was just pleasantly surprised to see that my daughter, Danielle, joined Vox this weekend and she's already posting!  She says that she's doing this to keep up with me while I'm away in the hospital.  We don't really get a chance to talk too much when I'm in here so she reads my blog to find out the scoop.  I didn't really know she was doing this.  I think I may have scared her about this situation.

Anyway, please drop by and tell her hello!  She's a BLAST and SO funny.  She'll be a good addition to your neighborhood:-)  Oh, and THANKS in advance!

Since yesterday, after all the big happenings with Savannah, I've been throwing up more blood than I've EVER seen.  Today, I had to be scoped again.  The good doc caurterized the bleeding again but was VERY firn about me NOT leaving the hospital until I have corrective surgery.  I won't be able to live without this surgery to remove more of my intestines and my stomach.  The feeding tube is seriously being discussed.  I may not have a lot of options because my surgeon who's perfomed all of my previous surgeries says that he won't be doing it this time,.  I'm too high risk.  My hope is that he and the gastro doc get together and figure out something that they can compromise on.  It's hard for us (Amber and Mom are here too) to hear that I'm basically supposed to die like this because there are no more options.  I'm calling the social worker, here at the hospital tomorrow, in order to find out other hospital options and help.  I want to go to the MAYO clinic to talk to a surgeon if my own, very good, trauma surgeon won't do it.  I can't believe they say I'm a fatality risk.  I guess I'm just supposed to wait til this kills me?  NOT!!!

Everyone here is pretty scared.  The amount of blood loss that I've sustained is significant.  I think they're going to try to keep me here until someone does the surgery (according to the gastro doc),  It's too risky for me to leave here either.  Soooo...  I don't know when I'll be home.  I don't have a private room this time.

I don't mind admitting that this is scaring the crap out of me.  This time I've been the sickest that I've been since this has started 2 years ago.  IF they agree to do the surgery, it will be a complicated surgery (and that's understating it).  I only know that I can't keep coming here to stay at my hospital hotel every other week.     

Please pray for me and my kids and my family.  They kind of like me a lot and the kids are terrified.  We just need to get something done and quickly.