PICC Line Setback

I am once again home from the hospital-this time the local one. Early Sunday morning I rolled over in bed and pulled my PICC line out. For those who don't know, it's an IV line that goes into your arm and threads its way up and around and into your upper heart somewhere, that you can use for IV feeding(TPN) or antibiotics. I use it for the former.

I woke up with Roxy, my Chihuahua, at my side happily lapping something, thrilled because the bed had never offered such ambrosia before. It was my liquid  "food" pouring out. I panicked a bit when I realized the PICC  line was out of my arm, then called the company providing the TPN, and the sleepy nurse said it might have broken off inside, I probably should go to the ER. So we did, arriving at 6:00 AM.

A very long eventually later, the ER doc was sure he felt it in my arm, not listening to me when I told him that he was feeling scar tissue, and admitted me, around 2:00 PM. I was scheduled for a removal and insertion the Monday morning. They came for me at 1:45PM, took me to radiology and told me that if we had measured the PICC line that came out, we could have known if any was left inside!

The X-rays taken the day before showed nothing, but a radiologist had not gotten around to reading it yet. We called Rene at home, she measured the length of the line that came out, and it became clear that it had all come out, andnobody-especially me- would have had  to do all the worrying about free floating pieces of plastic tube floating around in my arm or heart! Such stupidity, not on my part(how was I to know) but on the part of the nurse and ER doc.

I'm home now with a new PICC line, hoping I can have a few quiet days before the next shoe hits me in the head.

Blessings, Margo

Frustration

Twice I have tried to make an entry to say I am still alive, still plagued but little problems and big, and am struggling onward. Each entry actually had a smidge of humor. And twice AOL ate the entry. I am swearing up a storm, but will spare you because I'd rather not get TOS'd. I'll try again tomorrow or the next day. Margo

"Just a Small Setback"-Yeah, Right

  I am home from the hospital, with a very small hole in my pouch that apparently burst through a little more than a week ago. I went for what everyone believed would be a routine Upper GI, and low and behold, a pinhole that lets food trickle into my abdomen. The solution? No food in the pouch for two to six weeks. They are calling it a small setback.  

I am devastated. Not by the setback itself, or even by the 12 hours a day I must now be hooked up to a feeding tube, though neither makes me happy. I am devastated that they have to pump in more calories than I should have by my doctors WLS standard, because I need extra calories to heal.  

Now I know, it's still less than before, and I know I have to heal, and I know this is just a not-too-common but small side effect of the surgery and I know it could be so much worse, and I know a setback does not mean the end, etc, etc... I have heard so many look -on -the -bright side facts in the last few days, that they sound like platitudes, and all from people who have not had to choose to go through the hell that is WLS(and people still say it's the easy way out)  

But I have gotten through so far, concentrating on the recognition that this is the prime time for weight loss, that it gets harder after the first couple of months, use it well and wisely, and I certainly was. I had lost 53 pounds, and was proud. So far I have gained back 5 pounds. And I can't even call the pharmacist at the company which makes the food replacement stuff to find out how many calories I am forced to take in until tomorrow because he's not available on weekends(This is something Dr. Bell suggested I check on, because most feeding liquid is made to fatten people up! )  

All I do is whine and I mourn. I am still exhausted from no sleep in the hospital, and sad and enraged and stuck and miserably sorry for myself. Sorry to spew my misery out into J-Land, especially during it's Second Anniversary Celebration. I want to celebrate, too, but cannot dredge up the necessary energy.  

I don't want anyone to panic on my behalf- I will crawl out of this pit as I always do, I just am hating that I have to be here yet again.  

Blessings, Margo     

Margo's update

Hi everyone

It is me again ------ Rene

I have an up date on Margo We went  back to Yale Hospital for a test to see why she was having pain 2-3 hours after she ate.  She also had an upset stomach at the same time.   The test revealed that there is a small leek in the new stomach that has not healed yet.  The solution is not to eat or drink anything for 2 to 6 weeks. All fluids will be interveinous (sp).  At first it will be in the hospital ---  3 or 4 days ---- and then at home with the watchfull eye of a Visiting Nurse.

I will let you know how things are going as I find out more.

Rene

Depression

Depression is such a difficult and insidious disease with which to have to live. It creeps around the corners of the mind like faint tendrils of mist, almost unnoticed, then settles in like a pea soup fog without warning. Forget little cat's feet fog, this one's more like wet woolen blanket.  

People who have only been through brief or transitory bouts with depression, even those who have been felled by the death of a loved one and managed somehow to drag themselves back to life don't understand long term, chronic, repetitive type of depression. It can be like living in some frozen outer limit of hell, crawling out, then falling back down over and over again, a recurrent nightmare.  

I have worked long and hard in the fight against depression. It is no longer forever lurking right there in the shadows, ready to grab me if I am ruffled by a stray breeze. I take meds and work very hard to live in the light. And I do well, a lot of the time, not looking over my shoulder, not looking only down, living my life the best I can.  

I  have learned that no depression will last forever, and  I have crawled out of any number of dark periods, and will continue to do so. I no longer believe depression is my birthright and can claim how strong I am.  

But it still slips in unnoticed sometimes, like the fog, and I move from cup-half- empty to cup-never-gonna-have-a-drop-in-it-again. And suddenly people on all sides are telling me I have to make the decision to think positively and act-as-if and stop being so negative, and I am catapulted back to all those who told me to "just cheer up" and "just move on" when I was so depressed that I could not get out of bed.  

I say, I will do my process, I know how,  I always do, just back off, give me time. But too many don't or can't. This week three important people in my life have pushed too hard at me: work not to be so negative and things will get better. That feels like: hurry up, you are wallowing. Of course, all this serves to make me see only the negative, to put up defenses like crazy, because I feel unheard and discounted.   

I can see my depression clearly now. I think it's normal under the circumstances, I know it will get better as I do the things that work for me. I can certainly understand their frustration, and comprehend that they think they are helping me. They are wrong though, because looking at the positive is the next stage, one for which I do not yet have energy.  

Right now that energy has to go into drinking Glucerna and water and not throwing up. Into getting my necessary meds in and keeping them down. Into getting to tomorrow when my surgeon's nurse wants me to call again. Into the struggle of finding a new doctor and a new shrink who can evaluate my meds. Into the energy to do 6 or 7 minutes a day on the stationary bike, and into not stumbling because I am dizzy a lot.  

This entry is not a pity party, although some will think so. This entry is a concrete reminder to me of where I am, of what my priorities must be, and that I must not beat myself up for responding negatively to people who care about me. They are wrong to be pushing now, and I must find the energy to acknowledge my own negativity, and still tell them to back off for a while.  

I'm not sure what direction the world sees me moving, but I know I'm stumbling along at the right rate for me.  

Blessings, Margo

Setbacks Galore

One step forward, three or four steps backwards.

Rene said today she cannot stand my knee jerk negative reaction to everything, which was bad before, but much worse now. I am not too happy about it myself, but oh, lordy do I not have much energy to work on that change at the moment(and it does take energy.)  

We both agreed that for two years we have been saying life's got to get better if we just hang in, but today we recognized that it has not gotten appreciably better, and much worse since my bypass. It will get better, I do know this, but apparently not soon.   I called my surgeon's office today because I cannot get anywhere near enough food and water down as I need (especially water.) By 2:00 PM my stomach starts to hurt, and aches until I fall asleep. His nurse put me back to 3 ounces of food a day( I had been approaching 4 a day) and told me if I was not better by Tuesday, she'll have me come in for another barium swallow. I am probably just healing slowly, but better safe than sorry. 

And my Primary Care Physician of 10 years- who I like and trust-a rare combination-"fired" me today, because he believes I am using too many or trying to get more pain meds than I should. It was a shock, then a terrible betrayal. Luckily, he's wrong, I am proud of never once taking more meds than were prescribed by my pain management doc, and usually taking a lot less. I ended up between pain management docs recently (Worker's Comp issue) and made the mistake of calling him for help, then crying when his nurse called back 24 hours later to tell me no.  

I hate the medical system, and I feel betrayed by a doctor who could not even take the time to offer counseling or a place to go if he does think I am addicted. I need another top notch PCP, now, immediately, to take on my complex medical situation, not an easy thing to find in this (or any) area.  

 It has not been a good day.  

Little Orphan Annie would say, "The sun will come out tomorrow!" and all I can say is, yes it will, to another 90 degree day with high humidity so going to out tomorrow (which I have to do) will cause chest pain and SOB. Bah Humbug.   Setbacks are difficult when one is feeling fragile anyway, but I will slog through this, too, and emerge. I always do. I am just really tired .  

Blessings(and we all need them), Margo  

MagogoS'S Musings on a Changing Life

 Mood: Pensive

Two years ago today, at 7:45 AM my life changed so radically that it is still hard to believe. I was at work at the Women's Prison, when I got up to run to the bathroom before the day began. I didn't know the phone cord was wrapped around my ankles and took a fall that rocked the whole Medical Unit. You can read about it in my first Journal entry, July 21, 2004(I have yet to learn how to link entries-maybe someone could tutor me). 

 I not only broke my right elbow, but shattered my right upper arm to smithereens(it was no longer connected!) and damaged the radial nerve, probably beyond repair. I spent 16 days in the hospital, had surgery, came home with a frozen shoulder and elbow, an uncontrolled drooping hand, and what eventually turned into chronic pain.  I have not been back to work since, although it was my dream job-HIV testing, counseling, and education, and running an HIV positive support group. I still miss the inmates dreadfully.  

This was the catalyst for the changes which have now taken over my life, dragging me along, sometimes kicking and screaming, occasionally flowing along smoothly with surprising (to me) courage.   I've learned a lot about myself. First and foremost is that while I hate change, I can be rather good at it at times. I went into physical therapy a fragile mess, and emerged 15 months later with the ability to move hand, elbow and shoulder close to normally. I have learned to cope with more pain than I ever thought possible, both acute, then miserable moderate to low, long term. I have accepted I will have serious radial nerve damage for the rest of my life. And I had to fight Workers' Comp every two months for more sessions  

I have become Warrior Woman with the Medical System, fighting and demanding and refusing to see mediocre doctors, even when I am sobbing with frustration between phone calls. And lately it has been literally screaming with frustration between phone calls, which is more satisfying somehow.  

I started going to a gym seven weeks after surgery, literally staggering in, mortified by my size, clumsyness and weakness.Now have a personal trainer(this still make me laugh) to whom I have been going for almost two years. I will never be buff, but I am stronger and slightly more mobile. I lost 45 pounds, gained 60 back and said, enough, never again. I spent hours researching Gastric Bypass, and chose to do it despite all I knew it would bring into my life.  

Of course, not all change is wonderful. Being home full time has lead to depression and self-pity and a real loss of identity-am I still an HIV counselor even though I may never go back to it? It has been hard on Rene, who is happily retired, to have me home and often miserable, and has put such a strain on our relationship that we're now in counseling together. And my WLS has not helped at all, causing more tension in the house.  

Still and all, change is inevitable, and while I will probably never go skipping happily forward into it, I now know that I can live with and (eventually)embrace the changes I am given by life. It will never be easy for me-my poor mother made that impossible-but I now know I can do change when it is thrust on me, and even choose to change when I know it is right for me. Not bad work in just a couple of years.  

I started my Journal one year and three weeks ago to muse on my changing life. I never dreamed that the support I would get from my new friends would often give me the courage to keep going during some very bleak times-but it is true. Thank you all so much, you have come to mean the world to me.  

Blessings, Margo            

Categorizing

  It feels now as if the world falls into three sometimes overlapping categories. The first is that of friends and neighbors, many of who care for me a lot, who are concentrating on the outer aspects of this thing I'm going through. They ask, quite sincerely, how I'm doing, tell me I look thinner already around the face and belly(and I do) and inquire if I am feeling better yet, any healthier, any more energetic, any thinner yet.  

I am smiling at them, to the best of my ability, and saying the correct things, thank you for complimenting me, for the support you offer, no I'm not feeling more energetic or healthier yet, but that will come, I know. I'm working at it, eating as best as I can, riding my exercise bike. All this is true, plus it is what they want to/expect to hear. And I truly know they are working hard to be supportive and I honor them for it.  

The second category is those who recognize that I have been through a physical trauma, and will continue to suffer pouch pain and vomiting for months to come. I was not a great candidate for surgery (most gastric bypass patients aren't) with my added problems of 30 years of diabetic damage, heart condition, and need for oxygen, I did not exactly bounce back, In fact, I have just moved from dragging myself across the floor on my hands and knees to lurching upright into a stagger. Adding small bits of food one at a time has been a difficult problem which has left me with belly pain almost full time, and I am not close to my food and water requirements yet. But I'll get there.  

Most of these folks have had major surgery of some type, or chronic pain, and I do appreciate them a lot, because they "get" how wearing pain and exhaustion is over any length of time. I am still not sleeping well, and every excursion-to Wall-Mart or a doctor's appointment- sets me back on energy reserves.  

The last category is a small one, consisting of the few people who realize that I am not just wallowing around in misery, but slowly and in my own obscure way processing a loss as big as the death of a beloved spouse. Most people don't get that I love food on many, many levels, and that in many ways it worked well for me. It looks and smells and tastes good, it is a center around which people gather to socialize, to connect with each other, to cement bonds.  

It also worked extremely well for me emotionally. It calmed me when I was enraged, comforted me when I was sad, filled me when I felt emotionally empty, soothed me off to sleep, pacified the pain of life-both physical and emotional, and enabled me to keep on living when times were really bad. Even being fat, then obese, then grossly obese was not a deterrant.The fact that I knew it was killing me didn't matter for a really long time.  

I would go back to eating in a minute if I could, and live obese and deal with the prejudices and rude comments and negative judgements, except I don't want to die yet. WLS is the only tool available to me to force me to move away from my addiction to the way food makes me feel. And I am already getting pressure to accept the changes, and move on. 

This is what few people get.. It take energy to move on, and I am teetering on the brink of an energy abyss. The best I can do now is get up in the morning and take my meds and force down two tablespoons of egg or yogurt, and deal with the physical pain, and sip water as much as possible and ride my bike for seven minutes and get through the day as best I can. When the crying jags hit, I try hard to summon energy for them, too. And when I feel anger, I let myself yell swear words. This is all the all I have energy for right now.  

I am truly grateful to all the people in my life who are trying so hard to be supportive, and most especially for those few who fall into all three categories.The the support that helps most, however, is the emotional understanding and patience of those who can just sit with me in my pain without trying to fix it, or push it along. Their honoring of my process is a gift beyond words.  

Blessings, Margo