~looking into my eyes, from my own eyes.
Good Afternoon;
I know NOT how anyone can ride a roller-coaster. And especially this one...
I have accomplished zero today.
Almost as soon as I thought to become productive, the flashing lights began.
My throat is almost closed, but pouring out its slime- The stuff that makes and keeps one nauseated.
A hard way to spend a day, let alone an hour, of my life.
The homeplace looks absolutely abandoned. As I told Kristin earlier, I cringe to even look out my windows anymore. It is THAT bad.
I fell asleep much earlier- better that way, (for everyone). hehehe
Casey called a few hours ago. Herself being ever~so ill from those damned iron infusions.
Seems as though she feels worse and worse each and every week.
These infusions play havoc with her already severely compromised insides; and it kills me even to hear that little voice sounding so weak and sickly on the phone.
Truth be known, it ANGERS me to no degree that I have ever felt anger before!
This young lady has been through so very much- And they just keep dumping more and more and more and more ON her!
It is NOT fair.
It is unjust.
It is unreasonable.
That it is unjustified makes it even worse somehow.
JFK said it best: "There is always inequality in life. Some men are killed in a war and some men are wounded and some men never leave the country. Life is unfair."
Hating the word "idiopathic" from the very first time they stamped her diagnosis with it.
It is still wrong. (And don't even bother to get me started on that word)!
Am thinking maybe if I get outside, even in this humidity; and maybe if the rains hold off long enough, I can still be a decent landowner and make this all 'look' a bit better.
F*ck it. I am heading outside
"Damn the torpedoes, full speed ahead." (It is the nicest thing I can say right now).
Have a good one.
My love to all.
XOXO
me
What has Dr S had to say about how the treatment is making Casey feel?
ReplyDeleteAnd sorry to hear you have a "head"..... had I known, I would have kept the banging down over here.
XOXOOXOX
Pea.
PS
hehehheh you said a four legged word.
ReplyDeleteHanging in Sweet Pea-
Casey is still waiting to hear what he suggests about the darn enzymes!?! Mad about that.
Dr. Szabo has been in touch with Dr. Sutherland, but he (Sz) was out sick on Tuesday.
She should also have gotten her B-12 that day!!!
To thank you for your comment. I wish you WOULD have kept it down! hehehe
Just back inside now.
Hungry. Tired. And I broke my dang brace.
Time for my shower.
Love you ya know!
XOXO
Me
XOXOXOOXOXO
ReplyDeletePea
ReplyDeleteHmmm...
20+ views.
From my inbox...
ReplyDeleteRick is a fellow TP/AIT Transplant survivor...
***
Rick M.
"Your latest post"
Thursday, May 27, 2010 6:23 AM
***
Hey there!
Sorry to read about your recent troubles. I
’ve had a bad back for over 20 yrs, with a lumbar diskectomy at L5-S1 and a cervical fusion at C4,5&6. The lower back stuff is really painful – many days getting out of bed was a major chore (when it could be done). The neck was another proposition – I had lost feeling in my fingers and hands (not good for one who relied on a keyboard to much of his job). I’ve had multiple nerve blocks, especially in the lower back. If you can find someone who’s good, the block can last a year or more. Unfortunately, the very first block tends not to last very long (I guess it’s like developing a taste for martinis!). The other thing I’ve learned about spine problems is that, yes it is possible to diagnose with CT scans and X-rays, but unless I’m worried about a fracture, I insist on an MRI if the doctor doesn’t.
I’m also concerned about Casey. You mentioned the idiopathic diagnosis. Until I read the pathology report after my surgery, I really didn’t have a cause for my pancreatitis. The pathologist who examined my former contents thought that I was rejecting a transplanted pancreas. When Dr. Sutherland pointed out that it was my pancreas, the path opinion changed to autoimmune pancreatitis. This was probably the key to my winning my disability case. It’s related to my arthritis condition – ankylosing spondylitis. This condition causes the bones in the spine to fuse together and is diagnosed by a genetic marker known as HLA B-27. This marker is also associated with Crohn’s, Ulcerative Colitis, psoriatic arthritis and a host of other autoimmune diseases. The reason I bring all this up is that I’m wondering if Casey doesn’t have something like this going on that is contributing to, if not causing, her current problems.
I’m also wondering about her diet.
I have a blood condition called Polycythemia Vera, a condition of the bone marrow which causes overproduction of and enlargement of red blood cells. The primary treatment is phlebotomy – the modern version of “Get the leeches.”
This works since red cells take about a month to reproduce (as opposed to a few days for white and platelet cells). The goal of phlebotomy is to induce a mild anemia in the patient to slow down the red cell production.
This is a long way to saying that since the TP/ICT I’ve had great difficulty digesting fats –I’m about 20 lbs. lighter than the day before the TP/ICT, and I’m up to 16 Pancrecarb pills per meal (that was before it was put on the FDA shit list), so I make sure that my fat intake is minimal, and that means (for the most part) avoiding red meat.
My last several blood tests have indicated that I’m slightly anemic – the oncologist tells me that the red meat avoidance is essentially a form of self-treatment. He wants me to eat at least 1 serving of red meat per week which means that to avoid the fats in pot roast, rib-eyes, brisket and the like, I’ll be forced (forced, I tell you) to eat tenderloin. And I get to have a good glass of red wine with the meal. The things we have to put up with in the name of health!
Speaking of Pancrecarb, I seem to remember that Casey was taking it or one of the other enzyme products that the FDA dumped on last month.
What is she taking now?
So far I’ve tried Creon 24 and it seems to be doing fine (it has more lipase so I can take fewer capsules) but the manufacturer doesn’t have a patient assistance program like Pancrecarb had (I was getting that drug free). It is covered (to some extent) by my Medicare Advantage policy, but one month’s worth puts me in the “donut hole” right off the bat.
I also got a sample of Zenpep from my local gastroenterologist and it seemed to work well.
Dr. S’s staff is working on finding out which enzyme makers have assistance pro
Anne....I feel for ya. Knowing there is so much to do both inside and outside and not feeling up to doing either is very overwhelming. I have already forgotten what it was even like to have a restful night of sleep and to wake up without pain and feel completely energized. It's hard to get through a day when you feel so awful.
ReplyDeleteI had hoped Casey would feel better after that infusion. Sorry to hear it has her feeling just the opposite. Makes you want to stop doing those things altogether. Since her body processes it differently now, in a few days maybe it will kick in like it should and perk her up again.
Strength of a thousand men I tell ya......hugs Sweet Annie I hope you and Casey feel better real soon hon.
ReplyDeleteSweet PeachieBaby!
ReplyDeleteYou always have so much compassion. (I love you for that too, you know).
Not sure if you read my previous comment to Suzy on my previous blog, but i will be taking KC to the hospital tomorrow. This is just WAY wrong!
Besides, it is always a good thing to get a 2nd/3rd/4th/5th opinion.
I keep waiting for your "one of these days" to happen...
Seems we wait interminably.
XOXO
me
I sincerely hope that all works out for everyone Anna
ReplyDeleteHi Wonderful Mommy,
ReplyDeleteI have just replied to Rick... Told him we'll be making the trip to our local ER tomorrow... Maybe they'll be able to tell us more. They'll do bloodwork and probably a CT scan to see what my insides are up to... Whatever it is, they're up to no good I can tell you that...
I wish I could make your back and migraine better for you, just as I know you wish you could make everything better for me... I guess the best we both can do is take it one step at a time, one day at a time, and see what happens... We both deserve a nice long break from all this crap...
Know that I love you more than words can say, and I'm proud and ever so thankful I've got you for a mother! You've done so much, and continue to give to me that I don't think I can ever repay the kindness/love/compassion and so much more that you've given me...
Hopefully we'll learn more tomorrow... Maybe even how to fix what's going on...
Love you MUCH MUCH!!! (MORE!!! hee hee hee)
~Casey
omg, this is such sad, bad news. won't this ever stop? things should be getting better for Casey and not worse! as for you sweet pea, don't worry about anything that needs to be done, just take care of yourself, relax and sleep off that migraine and back pain.
ReplyDeleteAnne, what can I say that will make you feel better?? Not much I know. I wish I was the Magic
ReplyDeleteFairy and I would drop in and bless you both and make you all better!! Since I can't do that either,
I will pray as usual. Seems to me it's takes much longer now to get a reply than it used to, but
maybe that's because I'm getting older. My health problems are not that great either, but all we can
do is what Casey says...one day at a time, Sweet Jesus!!! I love you both and I wish you both to get better as quickly as possible. All my love and hugs to you & KC. xoxoxoxo