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My mom has terminal lung cancer

Apr 09, 2014 - 0 comments

Hi all. I've been away quite busy with being either sick or trying to keep my home standing - no easy job. Mom was dx in December right before Christmas.  She had only the symptoms of her metastases in her tibia. A nass had almost destroyed the entire bone. They put a "nail" in from the knee to her ankle to stabilize it and then did radiation to her leg and lung.

Due to having had breast cancer right where the kungass was we think the radiation for the BC contributed to the lung cancer. Her radiation oncologist thought so too. She had smoked but quit in 89. They used cyber knife to radiate the lung so there wouldn't be overlap where she'd been radiated before.

She got a blood clot which set her back but is a bit better now. She uses my walker and I take her to all her therapy and doctors appt which is really hard. I also take care of everything else at the house etc. Im trying to get my little mess of a house fixed up so she can move in with me. I'm doing all the work myself and its a lot of work.

I had to replace all the floors - rip up the carpet, replace the sub floor and put down cheap peal and stick wood looking vinyl. I used glue thank goodness. Then put in new lower cabinets replaced a couple doors and painted and stained everything. I'm working on bookcases now which is hard - all while taking care of mom and my own health issues. Some days the pain in my body is so intense I scream.  I just dont have money to pay for help nor the family who wants or can help. Not a good situation.

I also list my dear doctor of over 39 years. He retired (forced retirement) due to not being able to practice medicine the way he wanted (the way it should be done). Thats a long sad story snd now I only have a paliative care doctor who does nothing.
NOTHING. I'm so frustrated by it all due to having to be on medicaid I just can't get the care I need. Im trying to not focusbon it but pain has a way of getting your attention. My mom is so dear to me - our birthdays are May 3rd and 4th. Hers us the 4th. She'll be 86. That's a nice long life and shes been healthy too. She doesn't know how to handle illness very well though. Some of her problems are minor compaired yo mine at this point but being 86 and javing declined in fitness makes it hard for her (and therefore me).

Blessings to everyone. I just wanted to write a brief update and say hey. I do miss keeping up with everyone. I'll try to check in more frequently.  

Same old Song

Jan 04, 2013 - 3 comments

I am amazed that I have made so little progress improving my condition.  I have had "resolve" before and yet I've failed to get with and stay with a program to increase strength and general well being.  It seems that I only have one or if lucky two days where I can function somewhat normally.  Then I'm in too much pain to get out of bed.

Or - due to my GI tract damage, I can only go for a day or two without aspirating during my sleep, sending me into severe pulmonary distress, fever, and increased disability.  Right now, I'm taking so much laxative medication of multiple types that I'm nauseous half the time.  Yet, if I don't keep my bowels relatively cleaned out, my gastric contents back up and into my lungs they go.  It's so distressing.  

My house is falling apart - a plumbing leak rotted the kitchen floor, all the cabinets and the stud wall behind - all the way to the basement.  I was able to rip up the multiple levels of flooring, (a year ago) but now have rotting subfloor and I can see to the basement.  I don't have the money to have it fixed either.  Also, I can't afford heating and cooling, so my house is literally freezing.  (my niece gave me an electric throw for Christmas - my cat and I huddle under it)  My adult son and dogs just do what they can.  It's stressful to not have my home put together properly.  It's also difficult to not be able to do all the things I used to be able to do - shoot - I built my last house - designed, contracted ,and did a lot of the labor,.  Now, I complain to myself and feel stressed.  My basement and attic and basement are filled with all the crap from my huge home I had to move out of after my divorce.

I can't believe one person can have as many diseases and conditions as I have.  I can't possibly live much longer, but it just seems like something very basic went wrong long ago that caused a cascade of disease.  As far as I know, my kidneys are the only organs not diseased and dis-functioning.  That's crazy.  I put on a smile the one time a week I go out in public and no one truly knows all of the " " I face.  I can't complain all the time, and no one wants to hear all the problems - I'd have no one willing to be around me.  As it is, I've lost many friends due to them not understanding why I can't be there all the time for them like in the past.  As much as we all would like to think we are good friends to others - lets face it - NO ONE wants to be around anyone who has nothing but problems happen to them.  It makes you feel uncomfortable.

So - I continue to decline.  Unfortunately, laxatives are like narcotics - your body habituates and gets tolerant of them so that they no longer work.  Then you have to take more and more - hence the nausea.  I know there's a colostomy in my future, but I refuse to get a feeding tube because I know it wouldn't solve the problem.  There just isn't a solution.  Because of that, GI doctors run from me.  There also isn't a solution for my MS - I can't take the injections due to extreme reactions - so the neurologists run.  My last one said "you need fairy dust" - I kid you not!  When doctors can't help you, they too, don't want to be around you. I had one (when in the hospital) look at me and nod his head and say "well, at least I know I won't see anyone else today who's in worse shape than you".  WOW - and his specialty is hospice care!

If you hadn't realized it yet, and if I hadn't - this journal entry is a VENT. I just realized I'm really hurting from having the laptop on me, so time to stop complaining.

New Resolve

Apr 27, 2009 - 2 comments

I've been thin or normal/thin all my life.  My family is built that way - small frame and healthy eating habits (usually).  The last 2 years, I've been sidelined more and more to my futon home - my bed.  I'm mobile but just not that often or for any length of time.  I used to be on the move all the time - ALL the time, so I'm dealing with weight gain.  I can't handle it and I apologize for talking about something that many struggle with this way, but it's just that it's new for me and I don't have the money to purchase clothes in this new enlarged version of myself.  Plus, my weight gain is more in my waist that ever before, and that's not good.  I've never put weight on there - thighs or rear, but not waist.  Some is just post menopausal aging, but some isn't.  SO, the only thing I can come up with is to lose weight.  I don't eat very much, and I need all the nutrients I can get, so I need to do 2 things.  They are very obvious - known to all - a real duh!  Exercise more - and eat more wisely!  Sigh...  I'm afraid that I fall prey to the same mistakes many of us make - I eat more later in the day (which is of course bad for my aspirating) and due to meds and some of my metabolic imbalances, I crave sweets and give in too often.  My diet is very low in fats - so I supplement with Omega 3s, and I eat lots of fruits and vegies, but I now pledge to make a concerted effort to stop all unnecessary intake of empty garbage, and increase my activity in little bits - as able.  I also am going to eat more fish again - did while living in Hawaii, but it's hard to cook well when ill all the time. (major excuse strategy of mine)  Food stamps aren't enough to really get through the month either. (I have many good excuses don't I?)  I believe that if I were to get back into a shape I recognize and keep my body active, I'll feel better physically and mentally.  It's a hard thing to BEGIN though.  First steps are hard.  The eating will be easier than the moving.  I need physical therapy, but getting there is hard, so I'm going to start here at home.

Motivational words of encouragement are always welcome.  I need to be able to have something to wear!!!

Jan

I Must Get To The Bottom Of This

Apr 25, 2009 - 6 comments

I know that a body that has developed this many known diseases and disorders, must have several things of a basic nature that have gone wrong.  My research perseverance has pointed to several possibilities.  I think a lot of issues can be traced back to small intestine villi inflammation and damage leading to leaky gut and esophagus damage as well.  I have very low serotonin, which effects GI motility, blood vessel contraction and mood. (all effected in me)  Even though on SSRI meds, it remains low.  I'm looking into supplementing with 5-HTP, which looks very interesting and makes perfect sense.  The SSRIs only hold onto the serotonin the brain already has - it doesn't give the body any new raw materials to make more serotonin.  

Chronic inflammation needs to be dealt with, but NSAIDS are out, and so is prednisone (except in emergencies) so I'm looking for alternatives.  Since I have osteoporosis, I can't keep taking steroids.  My acid levels need to increase, so I need to somehow get off the Proton Pump Inhibitors I've been on for years, but it's a painful, slow process.  Also, with a hiatal hernia and no esophageal motility, and Barrett's, I can't let any acid burn my esophagus - or since I aspirate - my lungs. So that's a hard one.  But I want to FIX IT!!!  My bladder is inflamed as well, with pinpoint hemorrhages (Interstitial Cystitis) so there's no end to the inflammation (CRP is high)  

I of course want to live longer - we all do.  I'm nothing special there.  My kids have had a rough life and need me.  I HATE them having to deal with my illness and downhill course.  If anyone has ideas about holistic approaches, I'm all ears.  My finances are a BIG problem however.  Because of my ex being less than a good husband, I'm impoverished and on welfare and foodstamps.  Yes, I'm a social outcast.  I used to be an upper middle class gal in a big beautiful home I designed and built on a hill with millions of trees.  Now, I'm in a tiny little home squashed in with too much stuff, and trying to survive on SSI.

As God is my witness - I have learned and grown through all of this, but I am nearing my breaking point.  Something must give.  Something must improve.........................or not.  I know that if I keep going this way, I may become totally bedridden and slip away.  AINT READY!

This is a very poor excuse for a journal entry.  But it's what was on my mind.

Jan