So, what have we learned this weekend?

Well, not much :P

I had thought my last day of work was Thursday (which I was low-censused on, so I didn't even work). Little did I know, I was on the receiving end of....not enough information. I got called Saturday morning saying I was being low censused again. Interesting since I didn't think I worked there anymore. So I made a couple phone calls trying to figure it out and I was told that my severance wasn't starting until next week. Fabulous. Glad someone told me that. I was told it was going to start last week, then this week, now next week. They told me they could put me on the list to be low censused again for my Sunday shift since it seemed obvious I didn't want the shift so much (mostly I'm just confused and I don't like that so much, that and I was dizzy all day Saturday, which is also not fun). So I wake up early and call to see what my status is. Lo and behold, I've been removed from the schedule, I don't work there anymore. *eyeroll* Yeah.....I don't know either.

But I'll be calling my supervisor tomorrow to figure it all out.

What else? Well, I've been super dizzy and light headed all weekend. It's been incredibly obnoxious and I can't seem to remedy it. I broke down and put on my thigh-high TEDs today and laid down with my feet up for a while. Didn't help a great deal, but it gave me a little relief. I really hope tomorrow will be a different story because I'm sick of it.

And for an update/change of pace: I'm changing my diet. As with anybody with a chronic illness (or ten), there's a lot of research involved in figuring out what the heck is really wrong with your body and how to fix it. Since my docs refuse to go for the J-tube idea, no matter how much I insist I actually am sick, and my neurologist basically told me there was nothing else that could be done for me since there was no cause for my problem, I had to do some more researching to see if there was something else I could come up with.

Lots and lots of research has led me to gastroparesis more than once. One of the most prevalent problems with gastroparesis is food coming back out nearly the same way it went in (whether that's through the standard exit or back up the way it went in). That seems to be about the only symptom that I don't have. The only thing I can think of to explain that (cover your eyes now if you really don't want to know, that's all the warning you get) is that I'm so constipated that food has to take it's time going through my digestive tract and therefore gets a little more time to digest. And I NEVER throw up because my body has a serious defense mechanism against it. When I vomit, because my esophagus is so sluggish (and because the food is undigested and very viscous) that I stop breathing while I vomit. Even if it only takes under 30 seconds before I get a break, that's a long time not to get to take a breath when you're already choking. So it takes a WHOLE LOT to make me throw up. Last time it happened was when I was in the hospital and was getting way too many meds...my body knew that something was wrong and that it had to correct the situation (and I am thankful for that), but that was a good time to call it quits. And I had nightmares about that for a couple weeks after that.

Aside from lacking those two key symptoms, everything else fits. Granted, my symptoms fit a lot of things. But we've tried treating a lot of things. So let's give this one a shot, shall we?

I'm following guidelines for diet and nutrition commonly followed by people with gastroparesis, tailored to my own needs and tolerances. I'll be sticking to the low-fat, low-insoluble fiber diet, also restricting my dairy intake as well. I'm also going to be pureeing or grinding my foods to make them easier to digest. I'll be in control of what goes into my body and monitoring it closely. Foods will be things that I make in my kitchen myself (with the exception of some canned fruits, because those are rather important on this diet, though I will be cooking and canning/pureeing some of those as well).

The plan I've arranged has 3 meals and 3 snacks per day. Most of it is pureed, mechanical soft, or naturally broken down/easy to digest. I'm making plenty of meals and snacks in big batches and freezing them in portions that I can take out and use easily. In the beginning, my meals will be planned out, with a few options for alternatives in case my stomach disagrees.

I'm really looking forward to trying this and seeing how it does. If nothing else, it's just worth the try. And I'm hoping it'll give me more information to feed back to my doctors. Because I'm sick of all of this. I want to feel better. I need to feel better.

But my doctors aren't feeling as hopeful about it as I am. So here's me spreading my wings and flying on my own.

I've also decided that I'm going off my Topamax. It's not doing enough, or anything at all, anymore. It's toxic, and so hard on my body. And here's the kicker, some of the side effects are things that could be affecting my gut and weight. And with the Botox on board, I think I stand a chance of going off of it. I know the titration rate, I know the signs and symptoms of bad things to look for, and I know what to do if I feel things are getting worse. All of that is good considering I didn't exactly get my doc's okay to stop the drug. But I didn't see her saying yes given her stance on western medicine and the fact that I had just spent half an hour arguing with her about a J-tube. I had every intention of asking her, it just didn't happen after all that. So I'm doing it on my own, and if there are any changes, I will call her. If not, I'll update her (and brace myself) when I go in for my Botox appointment at the end of the month.

I talked to my mom about everything going on lately and my last doctor's appointment. She suggested I gathered up my files and notes from my doctors and have them sent to my old family doc to look over. Even though he hasn't cared for me since I got sick, he still knows me. And he would know the difference of what my healthy state is and what sick looks like for me. That's something I can't convince my doctors on very well right now, that I actually am sick and am fighting every day for two minutes of solace. That I never feel good and can't be active like I used to. That I just don't have me anymore.

She also said that if I whenever I went back to the doctor, she would go with me to talk to the doctor and interject some of her own thoughts. That helps. It sucks not living close to her anymore because she was always there anytime I got sick. Don't have that anymore and it's made things a lot harder.

But, that doesn't mean I'm not going to kick ass and give it my all to keep trying to get better.

For tonight, that means getting some sleep, because it is that time.

Well.....

We'll start with the good, because that's always a great place to start.

I had my phone interview yesterday. And it went really well. While I still don't know whether or not my lack of previous phlebotomy experience or phlebotomy certificate will hold me back, I do know that I felt very confident in the interview and I have high hopes for a sit-down interview with the team leader of the lab. I'm still hoping that they will train me on the job. Really really hoping and praying. I would love to land this job.

--

And for the not so good.

My doctor's appointment did not go well. Or at least, no how I had hoped. My neurologist doesn't think there's any need for me to have a feeding tube (specifically J-tube) put in either. We talked for a long time and looked over many past tests and my medical records and things. And while there are definitely things physically and physiologically wrong with my GI tract, there is nothing that should be stopping me from getting adequate nutrition. My problem is a "sensation" problem. Something in my body is telling me I'm full too soon or that I'm in pain when I eat or that I'm nauseated with little to no stimulus or etc. And while this would be a reasonable diagnosis/cause, it doesn't actually help me. Even if my sensation problem should not be stopping me from getting food and fluids, it is. And it's wearing me out. I'm not healthy and I can't pull myself out of the unhealthy hole that I'm in because the body needs food and water to heal. Without that, I'm just getting sicker and sicker.

I know the risks of a feeding tube, I know what I would be up against, I wouldn't want it to be permanent but I would endure it as long as my body required. I know all of this. I've been caring for patients that require these for years. And I've researched even more in relation to my own conditions. I'm not going into this blindly.

All I want is for someone to see that I want to feel better. That I feel like my body is becoming my prison and holding me back more and more every day rather than being my vessel for exploring life and having fun and enjoying myself. Going through every day feeling like I'm starved, feeling weak, feeling like something could be better....it's just not fair. I used to be better. I know I can be better, that my body isn't supposed to be like this. I know that I'm sick and that my health will probably decline faster than my peers, but I don't expect for that to happen for decades. I'm still young and there's no reason that I can't live a healthier life. I just need for someone else to see that.

.....because I know that if any of these doctors were in my shoes, there would be no doubt in my mind they would be looking for any doctor to do this for them too.

If we do this now, it'll give me more energy to work longer, to care for myself better, and to help doctors properly define what is wrong and right with my body. Because for all I know, half of my illness could be caused by my lack of nutrition. This would help me until doctors could figure out what was going on. There's no reason for me to suffer in the meantime.

When my neurologist asked me yesterday if I was anorexic or depressed, I said no. And I'm not. But, feeling like this, it does get me down. Not like I want to hurt myself, not like I want to die. I don't feel depressed like I did in high school. I just don't feel like my life is what it should be. There's a big difference. My knee-jerk reaction to tell her I wasn't depressed was right, because really and honestly, I'm not depressed. And I think if I told her that I felt even a little down, there might not be a chance to explain that it came from this, not caused by this. And I guess my mind knew that too without me having to sort through it all.

I think I'm going to call my mom and have a long talk with her about all of this. Because she was a little hesitant about the feeding tube idea when I first mentioned it to her, but I need her to be understanding and on the same page as me. If she knows the facts and I can explain it clearly, I know she will feel as strongly about it as I do. She'll still feel upset about her baby being sick, about another surgery (no matter how minor), but I really do think she'll support me and want to do the same thing. Then I'm going to make an office appointment with my gastroenterologist and have my mom come with me, to help explain that I wasn't like this a couple years ago, that I had a GREAT relationship with food, loved it, cooked it, ate it, invented with it, I was never shy on calories (3000 calories a day on average before I started getting sick). I want someone to support me and help my doctors see that I'm not going in blindly and that I know what's best for my body, not just what they think is medically best for the average body.

Because I don't know how much longer my body can physically hold out like this.

Anywho.....there's that. It sucks, but I'm dealing. Like I always say, I have no choice. I won't take it lying down. But that doesn't mean I won't do everything possible to make my quality of life better.

Randomness

I knew it was coming eventually, but it still sucks. My team leader came and found me a few days ago and asked me to come with her to talk. She said I wasn't in trouble, that we just needed to talk (yeah, still didn't sound good to me). We went down to the human resources office where we sat down with one of the HR recruiters. That's not good.

I was told that with the budget cuts and things that have been going on lately (yes, I did know about that stuff) that much of my department was being cut. And I was going to go as well. Fabulous. They told me that I held just enough seniority that I could be offered the one night shift position that was open. However, I don't do well with night shifts. I learned that one the hard way already, and feeling like my body is finally slowing it's rapid decline, I can't go back to night shift, no matter how desperate I am. So I declined the offer.

What I was told is that I would have until Monday (6 days) before the new change went into effect and that I would need to find a new job (great, PLENTY of time. NOT.) They offered to help me find a position at another entity (it's a big network of hospitals spread all over several counties in our area), which is great, all except any other hospital is a good 35-45 minute commute each way. Bummer. And the closest one with the most positions open is in a rotten part of town with a lot of druggies and gangs. More awesome.

So I thanked them for keeping me informed (it wasn't their fault.....it was the big wigs over their heads I needed to scream at) and went back to work, unable to speak about my feelings because I was asked to keep this quiet as not everybody had been told yet.

The next day I got online and applied for a couple positions. I reluctantly applied for the hospital in the crappy part of town because it was closer and the only one that had day shift positions open. Then I applied for a position at the hospital I'm already at, a position different than what I'm doing (and also part time) that I'm not qualified for. But there were so many open, I was hoping that they were willing to give me a shot and train me. I mentioned it to my supervisor, she mentioned it to that department's supervisor, and the next day there was an email waiting for me to set up a phone interview.

I still don't know if I have a shot at all at it because I don't have the certificate for the position and I don't know if they train for it or only require that you come in with the qualifications already in hand. But with that many openings, I had to try. And hey, I have a phone interview. If I do by chance get the position, I'll fill the other hours of my week with a second part time job, anywhere at all. There's a huge shopping center near my house and there's bound to be stores in need of cashiers or restaurants in need of part time servers/wait staff.

So that's where I'm at with my job right now. I hope and pray that I get the position in my current hospital, but I know that I can't hold my breath forever.

--

In other news, I have an appointment with my neurologist Monday. I have three things on my agenda with her. First, I'm going to try and get her support to come off the Topamax. I know her line of thinking is that if it's doing even a little good, it's worth keeping, but I think at this point it's doing more harm than good, and I don't want all these prescriptions flooding my body. I want the Topamax gone. It would take a month at the dose I'm at, and then I would be free from that. That would leave me with three prescriptions (and one is in office every 3 months). Second thing is that we have to schedule my next Botox treatment. I'm due for it at the end of April. so I need to get started on the insurance now. Third thing is my gut issues. My gastroenterologist told me to go see her. He thinks my gut issues may be neurological and is still refusing to put in a J-tube. But I think even if there is something going on that we can treat or even fix, there's no reason for me to be this sick from lack of hydration and nutrition in the meantime. I think a J-tube would seriously improve my current quality of life. I think it would lessen my migraines, it would help with my fatigue and weakness and pain because I would be hydrated and nourished, it would help with my heart palpitations and flutters and the faintness and dizziness that I have constantly from dehydration and electrolyte imbalance. This could all be corrected. I know a J-tube for someone who is fully cognitive and able to function and understand seems like a harsh idea to some doctors, but I'm running on empty. I really need to feel better. And I think this is the only way to get it, at least until we figure out what else might be going on. A tube doesn't have to be permanent; just a means to support me for a while. That's all I want. And that's what I'm going to talk to the neurologist about Monday. I need someone to see that I just don't feel good anymore and I really need this. At least for the time being. If they can figure out what's wrong with me and fix it, then the tube can come out. But I really want it in the meantime.

At any rate, I'm already tired so I'm going to kick back and watch some tv and sip a soda.

Could it be?!

My nausea is less. My appetite is....sorta there. I can eat a little bit before I feel pain or discomfort or nausea or a choking sensation or reflux (it all comes, just later than it used to). I have digestive noises when I didn't used to have them really at all.

I'm cautiously optimistic that this acupuncture might just be helping my gut. I can't believe it. I was skeptical. But it's working. It's actually working. I really need to be thanking God every second for this, even if it doesn't get any better than this, I've felt better the last few days than I have in months. That's remarkable to me.

I've added magnesium to my daily pill popping routine. Starting low, 250 mg in the morning, but I plan to add another tablet in the evenings in a week or two. And I am titrating off the Zoloft right now. After next week I will be done with that. And then I want to talk to my doctor about coming off of the Topamax. With the Botox on board, adding the magnesium, and just starting to show improvement in my gut, I want to get rid of the Topamax once and for all. I think it can only do more good than harm. One of the big side effects of Topamax is anorexia. I never thought I was having serious taste aversions (a few, nothing major) or weight loss related to the drug, but if I'm wrong, then removing this drug could help a lot.

That would leave me with more vitamins and choice drugs/supplements/meds in my routine than prescriptions. I haven't had that in I don't know how long.

Even though I am showing improvement with my gut right now, I feel more improvement in my gut and lower GI than my upper GI. I still have strong feelings regarding the J-tube and still intend to bring it up with Dr M next week. Even if it just gives me hydration and a few extra calories and helps my stomach out when it can't do the job, that would be an extra help. And being able to gain back some weight rather than just maintaining my underweight stature would be wonderful. So I'm not backing down on that.

We'll see how next week goes.

For now, it's bed time.

Good night to all. ::hugs and smooches all around::

Day in the life

I've been wanting to do this for a little while now. Not for anybody's benefit except my own, for later, to see how I grow and change over time. And I was just curious to see how my life looked on paper on a daily basis. So here goes...everything.

On a work day, the alarm clock goes off at 0450. This gives me time to hit the snooze at least twice (some mornings I need three times, rare mornings even 4, but that's pushing it on time). Since it's winter here right now, I sleep with my space heater on in my room to keep me comfortable at night and in the morning. I've learned this is better than any bed warmer, electric blanket, heating pad, stick-on warmers, layers of blankets or anything else. I keep it at the foot of my bed on a separate dresser so that it's far enough away that it can't burn me and that I can't kick it over (because I have one of the rare beasts that doesn't shut off when it tips).

Once I've hit the snooze a couple times (checking the time each time), I reach for my glasses and turn on my iPhone. I lay there in the dark and check my facebook, blog, email, maybe watch a youtube vid....just 10 minutes worth of mentally clearing the cobwebs from the evening drugs and slowly starting to move around. Then I put the phone away (back under my pillow, where it lives at night) and range my joints, to see what needs some work. Usually, it's hips, knees, ribs, wrist. Usually nothing worse than some subluxations that go back in with minor work. Once in a while, a really good total dislocation will slip in there on me and I have just lost precious minutes of my morning and the rest of my day is going to be spent in pain.

Once it's safe to get out of bed without fear of anything completely collapsing under me, I slowly stumble to turn the light on and shut the door. My puppy glares up at me from his kennel and lays his head back down. It's not light out yet, and he doesn't understand why I've turned the lights on. He never does. He tucks his head back down and tries to go back to sleep while I get ready for the day.

Scrubs, t-shirt (or undershirt of some kind) compression stockings, sneakers and socks, and a zip up hoodie. All of which I park in front of the space heater to don. Mmm, cozy warmth. The compression stockings are usually a trick in the morning because I'm not really awake that early and my fingers don't manage them all that well, but after some time and effort, they're up. And they help. So they're essential.

Meds and my water cup are sitting on my nightstand so that I see them first thing in the morning and at night. Morning meds are taken before I do anything else, that way I don't have to remember to come back for them later, because I never will.

I stick my phone and chapstick in my scrub pockets - the chapstick will stay there all day, the phone is temporary, on the off chance I get a call saying I'm not needed - and head for the puppy next.

He has 4 pad locks on his kennel because he's a beast and can give Houdini a run for his money. 4 locks later, me and puppy are headed out to pee. Once he pees and stretches some more, I can finally come in and go to the bathroom myself. I pee, then open the door so I can keep an eye on him (he's a different puppy every morning, I just never know who I'll get each day) . Deoderant, teeth, hair (usually down more than up lately, since the Botox injections have left me with tender spots at the base of my skull - worth it, and hey, my hair looks cute down). Then back outside. By now, puppy will realize he has to poo. Now he's really awake.

I go back to my room, get my backpack and things for work. Stick a Sierra Mist Natural in my backpack and play with puppy for a few more minutes before I have to leave. Then he goes back in the kennel for a while. I feel bad that he has to stay in there, but I only work 3 days a week, and dad gets home at 4 to let him out, so he's not in there my entire shift.

Get to work at 6:30. Stick the valuables in my locker (wallet, keys, meds), grab my cup and head down the hall with my backpack. With the new staffing grid, I never know where I'll be, so I've become nomadic. Whether as a sitter or on another floor, I carry my backpack to make sure I have whatever I'll need.

Today I was a sitter. An ICU sitter. Which is sometimes eventful and sometimes boring. Just depends on the day. I got report from the current sitter, got comfy (home for the next 12 hours) and familiarized myself with the patient via his online file. Then got familiar with the patient as he got fidgety. The reason for his anxiety was pinned down and the nurse was able to help ease his discomfort, helping him rest. So I was left to sit and watch TV. I always bring my Kindle and a notepad with me, but lately, the nausea has been so bad that I can't focus on writing or reading when I'm sitting at work. So I watch TV all day. And today was mostly chill. I watched a lot of TV, got along great with my nurse, and left in pretty much the same amount of pain I usually do for sitting that long (though I did get the comfy chair today).

I was proud of myself for managing to eat three times today though. That usually doesn't happen. I had my sierra mist like usual at the beginning of the day, 3/4 of a danish for late breakfast, half a cup of broccoli cheese soup for late lunch, and two hard boiled eggs for a snack in the evening. It's certainly not a lot of food, but it's not often for me to eat 3 times in one day. And I finished off most of 2 sierra mists and the melted ice in them. That's more than I usually have at work in a day.

And if I've made it through the day with joint pain, subluxations, aches, choking, and any other miscellaneous evils my body likes to throw my way, then I've done good, because at least I've made it through the day. Sometimes I'm ready to scream or cry at any second and the smile on my face is the most fake thing in the world, but I know that I'll be able to scream it out the second I get to my car, and that thought usually holds me over just long enough.

After work, pack up, hike out to my car, head home. Puppy is always happy to see me the second I walk in the door. I either shower or get changed and plop down on the couch with him. He makes a good snuggler at the end of the day. Sometime after 8, I take my evening meds, and park my cane close by. We sit and relax for the rest of the evening until my meds kick in and I go to bed early (no later than 9 if I have to work the next day, sometimes later if I don't). Puppy settles into his kennel. I settle into bed and lotion up and turn on the space heater. I say my prayers, get comfy and close my eyes. Another day will be upon me soon.

Updates

Called my doctors on Monday.

Dr H (GI) still doesn't want to do the J-tube. Which is a little frustrating at this point. Because I've gone from 118 to 110 lbs in a month. The nausea is worse. The lightheadedness and dizziness are getting worse because I'm so dehydrated and malnourished. I don't have energy. I feel like I just am not functioning at the capacity I could be. I'm not expecting to be an olympic athlete or anything, just....better. And it feels like Dr H doesn't want to discuss it. But he did tell me to follow up with Dr M (neuro). He wants to see if there's not a neurological issue going on that's causing all of this. Which, to be honest, is entirely possible. Since dysautonomia/POTS fits into the neuro category of diagnosis. So I am going to bring it up when I see her. But that's not for a couple weeks. The dysautonomia and the J-tube. I just don't want to have to start checking myself into the ER every week for fluids at $75 a pop to keep myself feeling halfway human. It could be easily maintained with a J-tube. I know it could.

So, until then, I'll be weaning off the Zoloft next week. And I started acupuncture last week, which was wonderful. I go back twice this week, then I'm going to start going once a week for a couple months to see what kind of changes I see.

I've gotten to where I look forward to my Klonopin every night just to ease the nausea and muscle aches a little. Some days it's the best part of my day. That's not what I want my life to come to. I need more out of life. I will get more out of life, no matter what I have to do to get it.

ER visit

So, a little more than a month after my hospital stay for a migraine in January, I was back in the ER last night for yet another migraine. I know that a lot of the trouble was that I was dehydrated. Considering my body sucked the fluids down like a sponge (and I didn't even have the urge to pee until I was halfway through my second liter), I'm actually sure that was a major issue. Luckily, it didn't take any pain meds to get rid of the migraine. I had IV Benadryl and Reglan (which is helpful, but at the same time, it increases stomach/GI motility, which makes for some cramping and discomfort), so my body just got to chill and relax and reboot. I napped/rested for a while while the meds and fluids worked. And a few hours later I was back home. Where I took another sedative (my usual evening Klonopin) and slept like a baby all night. It was just what I needed. I called in sick to work today because I knew that after a migraine and that many sedatives I was going to need another day to get it all straight. I had to make sure that I would be able to eat and drink plenty (or at least as much as possible for me) today, which isn't always an option at work. And I was definitely still tired from the drugs. I slept until 8 (much to my puppy's dismay) and was dragging by 10. At 11:30 I was settling in for a nap. 2 hours later I felt a little more refreshed. Still slightly headachy today, but not so much that I'm bothered by it.

But, the matter still stands. I am not getting enough fluids or nutrition. I want to schedule an office visit with my GI doc soon to sit down and talk seriously about this. Because I think it would make a huge difference. I know Dr H still wants to do a couple more tests, and I know that reasonably, that's the responsible thing to do. But at the same time, I know I would feel so much better if I was well hydrated and had more nutrition intake daily (in addition to what I can manage by mouth). I want to have a very frank and clear discussion about this with him.

But until then, I need to call Dr M to follow up with her about my ER visit. I think an office visit is unnecessary. I just need to talk to her on the phone and check in, let her know what happened, how it was treated and how I feel now. And the fact that I still think the Botox treatment is working. I actually think part of the onset was also hormonal. I think that was the trigger, the dehydration and malnutrition were just the exacerbating factors.

And I have my first acupuncture treatment tomorrow. Which I'm really looking forward to. I'm hoping that if I can do this once or twice a month it will help with some generalized pain along with some of my stomach issues. I hope to have something good to report back to Dr H on Monday after the treatment.

Well, my puppy is snoring and I'm chilling. So it's time for me to bail for the night. ::hugs and smooches:: to all!