Thanksgiving

This is another post from the PSC Partners Seeking a Cure discussion board. The "friend" in this post is Rayne, of course!

I got an email today from a good friend who has inflammitory Crohn's. We have a lot in common besides our health issues so friendship was natural. Her email was just to say hi and that her husband forgot to get potatoes. My response is as follows:

No! Not the potatoes! Us sick people need bland starches, darnit! lolI made asian food and nibbled on a little of "real" thanksgiving stuff. I did eat pie. Last year I was too sick to eat much and there was no pumpkin pie left by the time I felt a bit better. I threw a pity fit about how it was already bad enough that I had missed out on Thanksgiving stuff and felt too miserable to socialize much and now my last shred of tradition had been ripped out from under me. This year I made sure to at least eat a piece, even if my stomach wasn't thrilled about it.

My friend responded saying she spent days taking Phernergan beforehand and had done alright in the eating department. However, she admitted to me, she was secretly not a Thanksgiving fan because of the emphasis on eating, which is always a struggle for her (and us PSCers). My second reply is as follows:

I'm with you on the "secretly hating Thanksgiving" part. Back before I was veggie I used to spit out my turkey into a napkin when my parents weren't looking. I was used to lunch meat (which I don't think really counts as "meat") but the real thing wasn't something I found very appetizing. My mom is the same way. This year I was able to eat okay, but I ended up getting weepy anyway because I was so drugged that I couldn't be "present" and have a good time. Right now I'm really going downhill and, after a week of being a normal 22-year-old and not going to the ER, it seems so cruel to be thrown back into this sick life. Especially around holidays where you have some sort of Hallmark expectation of yourself.

I thought that probably a lot of you were having some thoughts along the same lines. Maybe holidays can be hard for you because of your illness. If you need to rant about it, rant about it. If you have some tips, please share. Maybe by getting together and realizing that we all struggle on somewhat of the same level with some of the same things around the holidays will help us all feel less alone.

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The Month of Health

From teh PSC Partners Seeking a Cure discussion board:

So, by some miracle, I woke up one morning about a month ago and felt great. Yeah, I had my moments and still needed some pain med. But let me tell you, I was out shopping and driving. I bought high heels and lacy underwear and told myself I didn't have to face a life of Ugg boots and hospital-appropriate panties.

I wore makeup and did my hair. I hung out with friends. I cooked food. I ATE the food. I danced and laughed. My MELD went down to an 11....which wasn't so great, but my health was showing on paper, anyway.

I wanted to share this because, although this board is a good place to come when you need help, it's also a place to come and tell people, "Hey, things will be okay and I'm living proof of that!"

For the past 4-7 days (can't keep track) I've been really starting to go downhill. Back to where I started. It's hard and sometimes that brief breath of healthy air seems like a curse. Like life was taunting me or something. But deep down I know that's not true. I came back with new lessons, a new perspective and some cute new outfits. Before this happened I was pretty sure I wasn't going to live that much longer. I'd even written down some funeral plans and asked my dad to come to Lincoln so I could see him one more time. So believe me when I say, if a one-month-of-miracle-health can happen to me, it can happen to you.

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Continued Health Updates

September 17th:

Just want to let you all know I'm home from the hospital. More info later

September 19th:

Hi everyone,

Well, I'm back in the hospital. This time I'm in room 508 instead of 504. I had some crazy pain last night that couldn't be controlled, went to the ER and they admitted me. One X-Ray session and an ultrasound later all we have is an old, deflated ovarian cyst on my left ovary. It may have been there from the beginning or it may have been a new one that burst. My gyno is coming to visit me and talk about it tomorrow.

In the meantime, my dad is in town and I plan to drink as much fresh veggie juice as I can get my hands on. Gonna see if I can't get my juicer brought in.

September 23rd:

Hi everyone,
I've been so busy recovering I haven't gotten around to updating you all.

I was admitted back into the hospital Friday night/Saturday morning. I was still having fevers and was having so much pain that it took multiple doses of hydromorphone throughout the night to control it. Sunday morning the pain was doing better and my dad was in town so I wanted OUT! And out I got. I've still been having a lot of pain and tiredness but I can pretty much control it at home, although I'm having to take far more narcotics than I'd like to. Hopefully it's only temporary.

During this second hospital stay I had an ultrasound done that found a deflated, small cyst on my left ovary. The pain may have been it bursting. We don't really know.

The diagnosis from my first hospital stay: a had E. Coli, a UTI and, of course, that obstruction (which is now gone to the best of our knowledge).

Anyway, I'm home!

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Painful Thoughts

I’ve learned that there’s a difference between being in pain at home when you’re a comfortable temperature, in your bed, surrounded by those you care about and by familiarity and being in pain in building which is big with high ceilings, kept at a temperature appropriate for storing your perishable goods and filled with architecturally modern, but very uncomfortable, furniture (namely, the hospital plaza with all the doctor’s offices). It makes no difference that warm blankets, beds, small, dark rooms and pain meds are a room away.

Unfortunately, I have two things: pride and chronic pain. I’m too proud to always go around in a wheelchair (and will tell myself I need the exercise until I absolutely collapse). I’m especially too proud to be pushed in a wheelchair by a stranger (and most likely a retired old man stranger) who will ask me all sorts of questions all of which the answer to will be, "I’m too sick to do that." And, frankly, the whole point of the wheelchair is to keep me from experiencing more pain and exhaustion. But do you have any idea how much effort it takes to carry on these conversations retired old man wheelchair-pushing strangers insist on having with a young gal like myself?

Second thing: chronic pain. Doctors don’t like to deal with people who have chronic pain. And when you’re already on a high dose of the world’s most potent opiod, what more is there for them to do anyway? Besides give you the IV version (God forbid!). Doctor’s are always trying to find something else to blame the pain on, too. And I’ve learned that the pain scale is crap. I could say my pain is a 12 on the pain scale and I doubt my doctor would bat an eyelash. Now don’t get me wrong, my doc is doing the best he can and I know it. The poor soul has no idea what it’s like to be me and he doesn’t want to know. And I don’t blame him. He, along with most of my other doctors, is scared of a case like mine. He can’t cure me and one little wrong step on his part could mean severe consequences. I mean, autoimmune disease, plus, on-the-transplant-list, plus chronic pain equals hot potato. No one wants to touch it. Except those really super brainy doctors who come from India. God bless ‘em.

Also, don’t get me wrong and think I love my pain meds or something. I hate having to take narcotics. I mean, I’m a mostly raw vegan. I don’t even put most dairy products into my body. I wish microwaves would die. I get super excited about movies like No Impact Man, Fuel, and Food Inc. Why would I put something as toxic as hydromorphone (Dilauded) or Oxycontin into my body on a daily basis? Because otherwise there wouldn’t be me. I would be dead. Or like Neville Longbottom’s parents (from Harry Potter). Each day would be another level of hell. With these drugs I can cuddle my rats, read books, make origami and spend time with my family. I choose that, even at the expense of putting something horrible into my body.

Even with as much medication as I take daily for pain, I’m usually trying every other avenue first. I’ll try a hot bath, meditation, deep breathing, prayer, etc. If I can get by without the pain med, by golly I will. I don’t want to get into the withdrawal cycle. Many times a good nap and some deep breathing have kept me from having to resort to super narcotics. And even if I do have to take the pain pills I continue my natural methods.

If you were to walk into my room while I was visiting the ER for pain reasons you would hear soft music or Gamma waves playing through some small speakers hooked up to my iPod. The TV would be turned on to the hospitals relaxation channel which shows calm scenes from nature (my favorite are the dolphins). I will usually be keeping as warm as possible and taking deep breaths if I can. After my pain is controlled I may look at pictures of angels, read a soothing book, meditate or just plain conk out.

Anyway, what I’m trying to say is I’m not some sort of narcotics purist and I’m not an addict. However, I will admit that I’m afraid of pain despite its constant presence in my life. So I do choose to use narcotics both for quality of life and because I’m a wuss.

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Health Updates

Later on September 12th:

Let's see...I've been put on Cipro (an antibiotic) and I had a very painful ultrasound of my liver done. UNMC said that if my bile ducts looked dilated that I was to be transferred to the hospital there. I hear the ultrasound looked normal, but tomorrow we'll find out for sure. My fever went down but then this evening went up to 100.2 . I just want to keep my blankets!!!

Been having a lot of aches and pains today that aren't controlled very well. I've also felt very weak and cranky. Not feeling very happy right now. Still, not a bad day. I made lots of origami and gave a string of stuff to my nurse. I have a barf basin on my table filled with origami things with a sign that says, "Take One! -Becca) except instead of a dash there's a heart by "Becca".

Natalie/Ginny came to see me and got me a balloon and real food from Open Harvest. She also tought me to play the card game, Golf. Thanks, Gin!
Well, I'm off to fall into a drug coma.

September 15th:

Hi all.
I'm still in the hospital (Bryan West, room 504). I've still been running fevers and have E. Coli and a UTI. I've been having a lot of pain and nausea so I've been pretty doped up most of the time. I have a thriving origami business going on. I make things for my nurses and docs and other people started wanting them to so I kept making stuff. Now the whole front of my table is filled with origami. There are papers to take, too. One I wrote out about what Origami Wishes is about and what the different things (like turtles or stars) symbolize to me. The other paper is a copy of the newspaper article I was in. I've been given $1 in tip money and now have a little box sitting out that says TIPS.

Kathy brought me veggie juice yesterday. I cannot even tell you how good that tasted.

Today I got an abdominal CT and I'm still running a bit of a fever. We were thinking I might be able to come home today but it doesn't look like that's going to happen. Anyway, there's probably a lot of stuff I'm leaving out but the drugs have made everything kind of a blur.

Later:

Okay, so I may be getting an ultrasound to look at my ovaries to make sure they're not the source of the fever. The fever should be gone by now with this much time on the antibiotic. Also, since bowel stuff is still an issue I'm going to be getting a colonoscopy on Thursday. So I'll be here at least until then.

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Hospital Time

Okay, so I have a fever of 102.8 and have narcotics in me. So, if this update is a disgrace to the English language, I apologize. Happy reading!

September 8th: The past few days I've been feeling feverish, weak, etc. I'm having big time nausea. I go to the hospital to get a shot of Zofran through my port so I can take my meds. The nurse is kind enough to leave my port accessed. This means that the needle that goes into my port is left in like an IV. There's a tube sticking out to administer medication. Accessing my port can be a pain, so having it pre-accessed is nice. Saves me a poke if I have to get more med put in.

Nightime: I'm having bad stomach cramping and lots of gas. I take my breakthrough pain narcotic (hydromorphone) but don't have any luck. I'm up all night with pain.

September 9th:

7:30 AM: We go to the ER to get my pain under control. I get an X-ray that shows I'm somewhat constipated but have a lot of gas. I'm given an enema and I go home.

The rest of the day is spent at Gramma's so I could be in a supervised drug coma. Mom had to work. I continued to have pain and took lots of narcotics.

That night I started to have body aches and a fever of 99.5.

September 10th, 2009

Midnight: Mom and I go back to the ER. An X-ray is done and it turns out I have a partial bowel obstruction. Time to suction! One of those nasty tubes is put down my nose and into my stomach and is them hooked up to suction. I started to get some relief from that, although the tube was a pain in the rear. Or rather, the throat. I'm admitted to the hospital for the night so they can continue to suction and give fluids and pain med.

During the day I have X-rays, blood tests, etc. The main thing is the pain in my throat from the tube. I even had to have major doses of pain med to make it somewhat bearable. I learned from my local GI and some of the on-call docs that the obstruction had happened because scar tissue in my abdomen (from all the surgeries) had tangled itself in with my colon. By late afternoon my tube was pulled. Hallilujah!

I'm on clear liquids, which to me means coconut water, clear veggie juices, water, herbal tea and vegan veggie broth with no MSG. To the hospital clear liquids means enough high fructose corn syrup to give me fatty liver disease. Jello, "fruit" juices from concentrate that have all sorts of weird acids in them and caffinated tea. The veggie broth was tolerable. I had coconut water (high in electolytes, potassium and mighty tasty) and herbal tea brought from home. Otherwise I ate a little jello, veggie broth and water.

At night I had serious itching so they tried Benadryl through my port. Omg, I was so out of it and asleep in minutes. I have very little recollection of the rest of the night other than continuing to itch and getting a pill of some sort that cleared it up.

September 11th, 2009

I'm put on a "soft foods" diet which includes milk, pudding, more high fructose corn syrup drinks and more milk. Thank God for Cream of Wheat. I mean, what's a semi-vegan, lactose intolerant girl to do? I got to have foods of my choice for dinner. The salad was sad, but hey, it was salad! I asked for whole wheat bread and got white bread with brown coloring in it. Mom brought me brown rice cakes. Thanks, mom!

This day I slept a lot. I read. I organized my room. I waited for doctors. Mom was at work so I was alone most of the day. I had a student nurse taking care of me. She accompamied me on an X-ray check-up. A nice guy always pushed me there in a wheelchair. The student nurse and the wheelchair dude were talking about school and careers and whatnot and I realized they were both younger than me. It's werid to be getting older and have people younger than you taking care of you in the hospital....

At some point I spiked a fever around 101.7 . Of course, there was no leaving the hospital with that going on. I had blood cultures, stool cultures, urine tests, one of those nasty nasal swabs and an exam by the doctor. In the evening my temp started going down to about 99.2 . They tell me I can go home in the morning provided my temp doesn't go any higher.

I'm still having body aches and needing pain med for it.

September 12th, 2009

5:00 AM: The tech comes in and takes my temp. It's 101.8. Later it's 102. 8 . My blankets are taken away, a cold cloth is put on my head and my room temp is brought down to 60. It's awful. I'm always cold.

Blood cultures are done, I'm given Tylenol. Now we're waiting for further instructions from the doctor. UNMC will be contacted.

My temp was just taken again and it's down to 101.2

Phew! It's a crazy world.

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Tantrums

I'm very, very drugged right now which means that I can actually sit up (sort of) and write a health update. I just haven't had the energy or been free from discomfort long enough to let you all know what's going on.

It's been a very, very trying time lately. There have been so many ER visits and so many problems that plague me that have no answers. It hasn't been easy for me to be hopefull and positive. I have to admit that I sometimes wish for death since my life (at least these past few weeks) has consisted of staring at my bedroom ceiling and crying or moaning or being stressed out.

I still keep up my routine of meditiaion, yoga and Tai Chi (when my neck will allow it), raw food vegan eating (especially lots of veggie juices) and rat therapy. I would love to get a wheatgrass juicer so I can start juicing and growing my own wheatgrass. Tastes like chocolate to me...go figure.

Anyway, I'm having a really hard time not throwing tantrums at the moment.

I've been itching so much my entire body is covered in scabs and rashes. All I can do for that is put on a special cream. Otherwise the only cure is a new liver (MELD is still 15 by the way). I'm either sweating for freezing. Or both. So far no actual fever has showed up on the thermometer but a breif 99.0. Transplant patients don't run fevers since they're immuno-suppressed but apparently no body cares about a 99.0. Only a 100.5 or above.

I've also had encephalopathy(that's ammonia on the brain) really, really bad. Running into walls, forgetting my birthday, hallucinating. It's absolutely horrid. There is no sense of self. You can't distract yourself because nothing holds your interest and you can't understand it anyway. It's been better tha last couple of days when I stopped taking Benedryl for my itching (it didn't help anyway). But I'm still rather crazy.

Somehow I managed to clean my room today, organize my closet and part of the attic. Excellet day; completely unheard of. Then I slept for almost 4 hours and woke up and immediatly took narcotics because my head was killing me. A nausea pill, two Xansex, a super-morphine, a veggie juice and a ginger/lemon/cayanne/honey tea later I'm very drugged, very itching, but able to at least keep something down and not want to blow up my head everytime I move. Thank goodness for deep breathing, home remedies, raw foods and pharmacutical narcotics, huh? I like to keep my health approaches balanced....

If ya'll didn't check out my blog from awhile ago called "Yellow Girl" you should. ( http://beccaspeace32.blogspot.com/2009/08/yellow-girl.html )
I got the sweetest letter from a fellow PSCer and how I had "changed her life" with that blog.

Anyway, I seriously need prayers, good thoughts, good energy and all that stuff right now. I totally believe in it and I appreciate it so much. Please ask for some extra stenghth, courage and grace for me right now. I sure need it! And pray for my mom, too. She has a sinus infection, a job and then ME, her full-time job.

My liver tests haven't been looking too horrible.
My MRA and MRI looked normal, so no anyurism or anything. Which is good but then....what is it?

My doc wrote us a presciption to go to the newest, fanciest health club that has a really warm wave pool thingy and all that good stuff....Hello hydrotherapy, massage, sauna and yoga class! Oh, and health food bar! Maybe I'll never leave....

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