My Future In A Poetic Cup Of Tea Leaves

Someone a bit further down the road I am traveling wrote a searing first person account of the day before being placed on a feeding tube.

This is the address: http://tlohuis.wordpress.com/2014/07/18/broken/
Or  You can read it here.

It was scary to read, but at the same time unavoidable.

I came close again this spring to having to sit in that office and talk about a feeding tube, when at the last minute, after fighting for 2 years, NH Medicaid finally gave in and covered the 3 cans a day of ensure I need for 24 days. So far it is working, and my weight is slowly going up. However, no word yet if they will continue to cover it or not.

Someday though, I will lose the battle with gastroperesis, an unwelcome gift from the lesion damage of multiple sclerosis. Already it takes my stomach over 4 hours that a normal person is rid of in under 60 minutes. A dairy free vegetarian,  almost everything I eat is inheretly low fat. On the days I plan to do nothing more than lay in bed and write, I must eat over 1700 calories. If I want to be active, washing dishes, writing, gardening, or any of 100 other tasks, I sometimes discover that I must consume as many as 2500 calories between 6am and midnight.

It gets exhausting to eat, and on the budget allowed on a low fixed income, the ability to have variety is near non existant. Some days I swear I can’t do it any more, can’t pay this thing away. Some days I swear I can’t do it,  then a commercial ad “looking for this?” bruskly moves me out of the area I was in, and convinces me that yes, I can eat food pantry oatmeal for breakfast every morning, twice. Down an ensure while dressing. Eat food pantry rice or pasta with home grown veggies at lunch, and another ensure at 3. For dinner? More rice, pasta, beans…broken up exactly 12 times a month by a single Morningstar item that makes me feel like I am eating real chicken or steak in a parody of whatever cooked from scratch Betty Crocker miracle I have made for my guys. When we can, I have whatever cake, brownies, pies, or candy we can scrape together money to buy. Down an ensure with bedtime meds. 

Actually, even thinking about what I will be eat in 3 hours is exhausting. That’s one reason I have home care aides. They know to just cook something, anything, as appetizing as their skill level allows, and take away the burden of trying to stare into a half bare pantry, mentally subtract the things I must save for the guys, and choose. Sometimes, picking what’s for dinner is a supreme act of mercy.

This writer has hit the wall. The only way to pump enough food into her mouth to keep her weight on even a somewhat sustainable level is to surgically insert a tube to constantly push in bags of unflavored Ensure. So she will never tase cinamon again, or the crisp of a potato chip. Just a sense of fullness as one bag empties, to be replaced by another. She speaks of the pain, the questions, the wishes for more time, even as she knows they don’t matter.

It is like looking at my future in a gypsy’s tea leaves….that God, science, and I may delay….but which will, like the grey hairs on my head, come unbidden and most likely without warning. One would think it would cause me to slowly savor each bite, roll it around my mouth tasting and feeling the texture. Sometimes, I still can, but all to often eating is a mechanical thing I do, a life sustaining procedure no more enjoyable than the 8 times a day I take medicine, or the monthly trip to the Doctor.

I decide to try, after reading her poem, to go find dessert that I can actually enjoy, can take an extra minute to let sit on my toungue. “Yes” I say to myself “There has to be a bit of caramel, or chocolate left I can drizzle over the pantry cheerios. That would taste.”

I glance at the clock, and it glares back that it is 9:56pm, and I am 400 calories short for the day.

No time to hunt for caramel, I double up on the ensure by adding 200 calories of soy powder to it, and choke it down fast so I don’t taste the chalky bite. Exhausted, I head for bed, wondering if  tomorrow will be my turn to be like her…broken.

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2 Comments

Filed under Cooking, disability, Mental Health, Multiple Sclerosis and other Neurological Diseases, poetry

2 responses to “My Future In A Poetic Cup Of Tea Leaves

  1. It’s me, the person you are writing about. I am so sorry that you, too, are suffering from this horrendous disease. I’ve gotten to the point where I don’t even get hungry. I have no idea what it feels like to be hungry. It was 11:00 p.m. before I noticed that we hadn’t gotten my tube feeding for the night, started. I’m shaking and for the first time since my surgery, last Friday, I’m feeling very sick to my stomach, feeling like I could throw up any minute. I put a call in to the on call home health nurse and I’m just waiting for a return call to see if I should turn it back down to 40cc/hr. I’m to increase the rate to 80cc/hr within 7 days. Tonight I turned it up to 50cc/hr and within half an hour I became really sick to my stomach. 5 days of no nausea WAS great. I was hoping that I could, at least, be nausea free, if nothing else. The food sits in my stomach for over 6 hours more than a “normal” person. Plain and simple: Gastroparesis sucks and has, forever, changed my life. I’ll keep you in my prayers and pray you never have to get a feeding tube. this is my second time. About 4 years ago, I had one for 9 months and it about killed me, literally, when they put it in. I developed staph, abscess, and cellulitis, the very next morning and spent 18 days in the hospital fighting for my life. On day 14 I was, finally, “well” enough to be taken back to the OR and have that feeding tube removed, opened up ( I now wear a lovely 5 inch scar on my abdomen, along with all my other scars from previous surgeries for all the other things that are wrong with me) to remove the abscess, closed back up, and another feeding tube was implanted on the opposite side of my abdomen. That is why I was so terrified. Been there, done that. I had a few complications this time. The doctor was unable to advance the feeding tube from my stomach down into my small intestines, so when I awoke, I was in some pain I cannot even begin to describe because the feeding tube was coiled up inside my stomach, which is about the size of my fist. I was then taken to radiology and the radiologist messed around with it for 45 minutes and was finally able to get the damn thing in place. So, an hour of surgery and 45 minutes in radiology, and I was finally done and spent 4 nights in the hospital. I was going to get to come home Monday, but when I went to get dressed, I noticed how distended I was and in a lot of pain and discomfort. I looked as if I had swallowed a bowling ball and felt as if I would rupture, any minute. The nurse called the doctor and I had to stay another night til the doctor could see me in the morning. I was given milk of magnesia Monday night and it got things started, just a little, and I was able to come home Tuesday afternoon. I do feel stronger, already. I had become so weak, I was on the verge of collapsing. I was so excited to have 4 days with NO nausea. Nausea is just a part of who you are when you have gastroparesis, like another limb. I’m feeling really disappointed and hope it will cease, once and for all. I know, that’s only a dream, but hey, us unfortunate ones that have been “blessed” with this idiotic disease, that’s all we have, DREAMS and that’s all they’ll ever be, to be truthful about it. There is no cure for this demon.
    I can’t even fathom having to eat all those calories you talk about. I’m doing 3 cans of Ensure through the feeding tube, to start with. They want me to do 6 cans, but that is way too much for me and 6 cans won’t even fit into the bag and I refuse to be tethered to this machine 24 hours a day. I was told I can start with clear liquids and advance as tolerated, REALLY? I can’t not tolerate anything in my stomach, that’s why it bypasses the stomach and goes directly into the small intestines. sigh………………. I have so much more I could write, but I am really tired. I would like to get to know you better, I think we can become fast friends. I look forward to that, if you have any interest. I really don’t have anyone else that really understands what it is we go through and having someone like you would be great. Let me know what you think. It’s bittersweet because I really hate to even think that anyone else would have to go through this, too, but at the same time we need a support system, a support system that REALLY gets it, and you have to have it to really get it. I’m so very sorry for you. You mentioned having MS, as well. I don’t have that, that I know of, but what I do know is I have a long list of invisible chronic illnesses and an autoimmune disease that the doctors can’t seem to give a name. I know which one it is because I’ve read complete books on the disease and done tons of research and I have some really tell tale signs of the disease. Doesn’t really matter because add them all together and it’s pure HELL, no other way to describe it. Now, that I’ve written a chapter of my never ending novel, I’m going to shut up and lay down and patiently wait for the nurse to call because there will be no sleeping, the way I’m feeling. I wish you the best on your journey and I would really like to walk beside you, to wrap my arms around you and give you the biggest hug ever. I hope to hear back from you and let me know what you think about this chapter. I really want to write a book one day, but not sure I have the skills needed to do that. Just another DREAM of mine. Take care, friend. I look forward to hearing from you. I would love to skype with you since there’s so much to say, it would be much easier, but I have no idea whether you skype or not. Sleep well, my friend. Until then, peace and hugs,
    Tammy :) not smiling about this demon. Smiling because you found me.

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    • I just got this because I have been working myself into illness for my wedding…August 16, and there is so much to do it is crazy. I have a laundry list too, both physical and mental, and so does my fiance Brian. I have to get back to wedding stuff for now, but yes, will definitely keep writing, and if I ever get the time try skyping. I have had it for a while, but still not very good at it. If you look on my facebook group Not All Catholics Are Roman…But All Catholics Are One, you will see where most of my blogging time goes and why this blog is so slow…

      Still managing to not have nausea everyday all day. I have it, but it comes and goes and so far I am able to quiet it down with the zofran. My test was that about 50% was still left after 4 hours, but it appeared that by hour 6 it all cleared, so they sent me home with the six meals a day. I went from 115 to 133 over the next few months, mostly because I can still eat things with sugar like cake and cookies. Then this spring I had two separate bouts of viral stomach bugs and lost weight each time, but because we have so little money for food (and Medicaid wouldn’t cover the ensure) I went right back down to 115. Last week I had a good amount of stuff from the pantry, it wasn’t too hot, I have the ensure now and I weighed in at 124. This week I am having yet another premenopausal period, there wasn’t as much choice, and I ended up over sleeping some days, so I waS down today to 120.4 Also found out they had trouble waking me up because I am running a fever..low grade 100.1, but yeah any fever in an MS patient is a problem.

      My fiance has post concussion syndrome, a brain injury, and even though he is doing awesomme in the rehab program, there are just some things he has trouble wrapping his head around. He has gastroperesis too, but his is much much milder than ours. He flunked the one hour, but passed the four hour, and they think his is from all the GERD damage he had over the years. He has a fair amount of scar tissue in his stomach and some parts of his esophagus. Since his GERD is better controlled now, they aren’t expecting his gastroperesis to get much worse over the next few years as long as he avoids high fat food, alcohol, etc etc. Sometimes he gets it, that eventually I will lose the battle and have to be on a tube, some days he doesn’t and gets angry at me “thinking of the worst” instead of hoping for the best. Considering I already sometimes have to use an intermittent catheter, and since I have both retention and incontinence I wear depends, he has a better understanding about the other tubes I will eventually have.

      Last year, my MS doctor told us to go ahead with a trip by motorcycle to North Carolina. “You are in the best shape you have been in years. Everything is stable. Go, even if you are getting married next year, go and make this your honeymoon trip because I can’t promise that next year you will be ok to do it. I think, since your lesions have been inactive for 3 1/2 years you have a good chance of being together 20 years, but these next ten are going to be the best, so go live as much as you can.”

      I foolishly went ahead and decided to launch a media company with a partner for all my writing, blogging, and video projects. Took out a loan at a crazy rate and payment, started working in November, and then spent all of the next three months shoveling snow, getting wiped out, taking longer and longer to recover – all the while not getting any work or significant writing done and the wedding kept getting closer and closer with my sewing machine not even open, never mind making the corsets, skirts, vests, and so on for my wedding. Worse still, our other bills went up, food stamps got cut off, and so now, well, you know.

      I hate the weekly weigh ins. I love seeing my granddaughters who are 7 and turning 5. They are from my ex-stepdaughter Nicole, who is the closest family member I have after Brian and his son. Then I have two more ex-steps, Kayla and Mary. They are probably the next closest, and only live one town over. They are all in the wedding. If you count the one I adopted, the two I gave birth two, the ex-foster kids I cared for (many of whom I still talk with), the ex-steps and my new stepson I have 15 kids. I have a grandson I used to see quite a bit until his father moved and I split (on friendly terms) from his grandpa. There’s probably more grand kids out there, but only three of them know me as Babka, Slovak for Granny. Everyone except Mary and my stepson Jamie are adults, scattered all over the US. At one time, Brian and I dreamed of getting a motor home and traveling around to see them and the country, get out of the cold in the winter. Medicare is taking forever on writing up what the rules and coverage will be for chronic disease home care though, so right now we have to stay here in NH, and have to stay poor enough to be on Medicaid. Neither of us could manage without our aides and home care nurse unless we had someone live with us full time. Nicole and I almost bought a house together just for that reason, then when the tea party shut down the government in January last year, our RD mortgage we were pre-approved for was axed as part of the deal to reopen things. Without it, and it’s special terms for section 8 borrowers, we were done for. Brian and I decided to just try and stay here in this tiny old cabin, and to try to add enough storage so we could fit the things in we needed. Some days it works, some days it doesn’t, like now when the entire dining are is awash in wedding sewing. He and Jamie love the lake just across the street and go fishing and swimming all the time, and I love being able to have a garden for my rosebush and veggies, so it is ok. Hard to afford, and it is slowly killing me to try and keep it up, but what can you do right? At least here, I can get protein from the fish they catch, we can get water, grow food, and if the zombie apocalypse comes be far enough from the city to have a little bit of a chance to survive. There’s even woods, although how the hell I would manage to track and kill a deer now is beyond me. I know I could trap rabbits, and I know how to butcher and skin them and poultry. I already buy the guys meat bulk and do the butchering to save money, even though it can wipe me out for days after.

      Brian just came in to remind me we have to get wedding stuff done…will write more later. Or if you are on facebook, private message me there! you take care, ok Brenda the half nun….(another more funny story)

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