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Tuesday, July 31, 2012

Can't Sleep & Surgery Update

I have been awake for two days straight vomiting. My stomach is cramped and my knee burns. I called the Specialist today since it's almost been a month with no word about the stupid Smart Pill Test. I think I may have my records transferred to another specialist. She also hasn't called in my anti-nausea medication and I've gone for two days without it or sleep. Every time I lay down to sleep, my stomach makes strange noises and then I end up vomiting violently. The cramps are almost unbearable. My throat is still burnt and swollen. I'm just so tired and worn out.

I did managed to escape the house for a little bit today to vote. It was nice to leave for about twenty minutes.

I called the knee doctor today too but they haven't received my psych evaluation yet. I had it done last Monday and I thought it would be in by now. The office said they would call the other doctor and call me back tomorrow to let me know what was going on. They also are measuring me for a back brace on Thursday. I hope that will this trial, some of the vomiting will stop. Part of my pain response is to vomit, so I hope if I can control the pain in my knee, that I can tell exactly what's wrong with my stomach.

Read about the surgery and trial HERE.

The more I read about it, the more terrified I become. But, if it will help my stomach and my knee to stop feeling like I set it on fire, then I'm all for it.

I need to call my OB/GYN and talk to him about the Lupron injection as well. So many phone calls!

I hope that I can sleep tonight. I also hope the doctor calls in my medicine soon. I'm tired of doctors and surgeries. I've tried to keep myself distracted with TV, reading, and games but it's not working. I've thought about teaching myself Spanish.

Anyway, this is going to be a short entry because I need to go take a shower and try to sleep before I become less coherent.




Saturday, July 21, 2012

Bitterness

*Please don't take offense to what I have written below. I'm not targeting anyone or anything - just writing down my own personal feelings at the moment. Please don't be angry or think I'm talking about anyone/anything in particular. Just getting out some feelings.*

Bitterness. That about sums up my mood for the Summer. I know that this entry is going to sound selfish but I need to get it out there.

I'm just tired. I feel like I haven't had a break. All of my friends are gone for the Summer - off visiting family, trips to the beach, and having fun. I'm stuck here trying to work on things and that's difficult when I'm vomiting six to eight times a day. Just picture yourself having food poisoning 24/7 and being nauseated all day, it's almost like that. I sat in the bathroom and cried for an hour tonight - just because I was in so much pain emotionally and physically. =(

I'm just insanely jealous. Where's my vacation and my trip to the beach? I spent my 10 year dating anniversary with my husband in the hospital. It just makes me incredibly depressed. I get stuck doing work because I'm home and I'm not going anywhere. It's not that I don't mind doing work or anything like that but I want to go to the beach with my husband for a week and block out school completely.

I sometimes feel like I'm taken advantage of because people know I'm always home. It's why I've been off of the grid for the past three days. It's not that I mind helping or anything like that - I feel like it's just not fair. I know that life isn't fair, but damn. I know that feeling is unfounded, but it's in the back of my mind - chipping away. It makes me even more sad.

I am tired of going to the doctor and traveling with a bucket. Monday is my psych evaluation to make sure that I have the right mental facilities for the permanent implant trial. The leads will be placed inside of my epidural fluid and the wires will come out of my back into a pager sized battery. I will wear it for 5 to 7 days and I will be unable to take a shower with the device in as well as to be unable to move certain ways. I hope it works for my knee.

Also, I'm trying to get the endometrosis in check. There is a special pharmacy that the Lupron is coming from. They will talk to my insurance to get my insurance to cover it and then the doctor will administer the injection. I will have two over the course of the six months. If I don't notice an immediate change, they're going to go in surgically and clean the endometrosis.

I haven't heard back from the Motility Specialist about whether or not the Smart Pill is covered. I should probably call her on Monday and make sure she hasn't forgotten about me. She wants to confirm that I have gastroparesis. I want to throw up on her shoes. I don't like her very much.

Anyway, I'm at home, wallowing in self pity and loathing because I can't do anything other than work or play on my computer. That gets old after a while. I've been reading on my Kindle a lot. It's nice to escape into someone else's world for a while.

I'm exhausted right now and it's only 8pm. I haven't done anything today besides read and watch a movie on TV. My husband and roommate went to see the new Batman movie. I hope that my stomach will stay under control so that I can watch it too. Right now, I'm nauseated and my stomach is swollen and bloated. I have intense amounts of pain from the spasms coming from my stomach muscles. My diaphragm is sore from vomiting violently. My throat is swollen and burnt from the stomach acid that I can barely swallow pills. I've had two pills get stuck in the back of my throat today.

I just want to go back to sleep. When I sleep, there's no sickness. It's peaceful - except for the nightmares.

Thursday, July 19, 2012

Visit with Dr. Levitt - More Surgery?

I went to visit my OB/GYN for my usual checkup and my 2.8cm cyst that the GI doctor found while doing a CT scan. I had an ultrasound done, which was extremely painful and my regular exam was extremely painful, and then found that I have another cyst, that is 2.0cm. The previous one had ruptured and now I have another.

I could have cried.

It's hard to tell when the previous one ruptured because of my stomach pain. It's hard to tell the different pains a part, if that makes sense. But now, I get to look forward to another cyst rupturing. He wants me to take Depot Lupron. This is an injection given once every three months for up to six months - so I would have two injections. If this does not work, then he is going to go in laproscopically, through my belly button, and clean out everything - all of the scar tissue and endometrosis. So, I might have more surgery. I'm trying the injection first. I really don't want any more surgeries.

I'm trying to take care of EVERYTHING that causes me pain so that I can tell what's *just* coming from my stomach.

I'm just really frustrated. I mean, all of this is impacting my life. I want a normal life. I want to just go to class in the fall without any problems. But now, I may have THREE possible surgeries in the fall. How do I deal with that and class? What do I do? Do I just register for Maymester classes? Even if I take an online class, I may miss some of it because I will be on medicine. The nerve medication I'm on now makes me slur my words and makes me sound like the town drunk. I didn't take it today so that I could talk to my doctor without him thinking that I had been drinking.

My drug list is getting longer. I had to buy a bigger pill caddy. I know all of this sounds like whining but I'm just so tired of it all. I'm tired of all of the medication, tired of being under the influence of medication all of the time, tired of not leaving my house, tired of being dehydrated, tired of vomiting, tired of having more problems that may need surgery - I mean, it's a lot to deal with. Sometimes, it seems like no one understands. It just hurts even more. I know my friends are tired of hearing about it and that's why some of them don't come over anymore. That's like a knife in my heart.

It just seems to be one thing after another. I'm not in control and I don't know what to do. Please cross your fingers that this injection works. If not, it'll be another surgery for me. It's not a bad surgery - they go through my belly button - but it's still surgery. And I think I've had enough of those.

Sunday, July 15, 2012

GP, Weakness, and now Ovarian Cysts to the Mix

Today was a good day, so I was able to leave the house for the first time in months. My husband and I are looking for replacement dressers, nightstands, and a bed frame. My current dresser is too wide with a mirror and it takes up a lot of space. I've abused it over the years so the drawers don't quite fit in place anymore. We picked out a three drawer nightstand for both of us and five foot dressers with two small drawers at the top of the dresser for things like socks. They're being built and will be ready in three weeks. Also, My husband is going to take me back to buy the bed frame I want (the picture is included) and a vanity (which I don't have a picture of yet). I'm just excited to have furniture that will last forever, as long as we take good care of it.

After the shopping trip, I have never felt more tired. I was so exhausted and weak. I came home and took a three hour nap. I just feel worn out and sick to my stomach now. I just took my anti-nausea pills but I think I may have overdone it today. We did go to a lot of different places. While it was good to get out of the house, I shouldn't have pushed myself so hard. But, I really wanted to be a part of the decision making process for our bedroom furniture. I can't wait to get the bed! Here is a picture of the frame that I want:



Right now, I'm just really exhausted but this furniture is keeping me motivated. I'm really excited to buy sheets, a comforter, and pillows for the guest beds. I'm also excited to have our room fixed up so it won't be so cluttered. I'm excited to have nice, brand new things. I'm not knocking second hand things because they're wonderful but this is the first bedroom suite I've owned that has been brand new that Jesse and I have picked out together and we couldn't be more excited! Also, it was a lot cheaper than most stores wanted for particle board crap that wasn't even reinforced. This is real oak and the drawers will not fall out of alignment. This store was a great find!

But, I've done too much this weekend. We also bought a day bed for the guest room/library along with a trundle bed so that guests will actually have a place to sleep. That involved a trip to IKEA and that failed. So, we went to The Original Mattress Factory where we've ALWAYS had good luck, and we found what we were looking for there. Here's a picture of the guest bed we purchased:





I've only vomited once today, which is a BIG improvement but I have a feeling it's going to be a rough night. My stomach's decided that it's not finished yet. I'm just so weak. I hate feeling like this.

Oh, and Jesse hung up all of the blinds downstairs in the breakfast nook and the sitting room! Now, I can sit here and read without people peering inside of my house! It's almost becoming home. We're finally putting in the finishing touches! lol

On a sadder note, I just want to feel better. I've been taking motilium which has been helping a lot but you can't get it in the United States even though it's prescribed EVERYWHERE ELSE IN THE WORLD! We have a very screwed up health care system. I've upped the dosage on the pills according to the instructions. I take two to three pills three times a day. It lets me eat. Although, like clockwork, after two hours I vomit but some of it DOES stay down which is a big improvement over what's happened in the past. I wish that Georgia would allow medical marijuana. I really would like something to make me hungry and allow me to eat and to actually FEEL hungry. The nerve medicine makes me somewhat hungry but not always.

If I'm this weak and tired after a shopping trip to a furniture store, campus is going to kill me. *sigh* That's a problem I still need to deal with. I need to get my doctors to write letters and I need to sit down with my adviser to come up with some sort of plan, if I can make it to campus without vomiting.

I'm seeing the OB/GYN on Tuesday to address my ovarian cyst. I'm scared to go by myself but I'm scared to ask a friend to go with me since, it's a GYN trip but those ultrasounds hurt and they're going to have to do a trans-vaginal ultrasound to confirm the cyst is there.

It was originally picked up by the CT scan my doctor did and I have the paperwork that I'm taking with me. I have a 2.8cm cyst on my left ovary. But, it hasn't even registered because of my gastroparesis and knee issues. Sad, huh? Well, I'm trying to take care of one thing at a time. I'm not sure what the treatment options are for the cyst once they locate it. That's why I want an extra pair of ears with me. I don't always catch everything.



Wednesday, July 11, 2012

My Visit with the Specialist

The Motility specialist visit was today. I told her all about my history of anxiety and how I vomit when I'm in pain. She told me that the gastric emptying test at the hospital might not have been accurate because they were giving me pain medication in the hospital which slows down digestion. So, she is going to give me something called a smart pill.

Here is the information on the smart pill

She says that it's good that my doctor put me on neurontin because that will help. If the smart pill confirms the gastroparesis, then she's going to try Nortriptyline. She says that a lot of her GP patients have had wonderful results with the medication. If I can't keep it down, I can sprinkle it on a teaspoon of applesauce and just swallow it.

Information on Nortriptyline


I hope the smart pill is covered by my insurance, but I'll have to check. If it's not, I'll have to do another gastric emptying test (which hurt tremendously last time) and a barium swallow to make sure that my colon is all right - no polyps,
Crohns, or worse.

The original thought that my regular GI doctor had was that the GP was a result of my gallbladder surgery but the specialist thinks it is the result of a virus. She told me to have hope, that the GP will go away if that's how it started.

I'm anxious about school and not sure what to do. I'm going to search around for an online class. She told me that I can't go to class puking, obviously. She's going to try her best to figure out what's wrong but also suggested that I see a neurologist since all of my problems seem to be nerve related. She also suggested that the neurologist check me for autoimmune diseases. I know that I've been tested for Lupus and that was negative. I may or may not have Celiac.

The specialist also suggested that the vomiting could be caused by abdominal migraines. I have never heard of such a thing.

Info about Abdominal Migraines here

I didn't even know that they existed! She has a lot of theories besides gastroparesis and she's going to check them all. She said that doesn't mean that I don't have gastroparesis but she wants to make sure.

I really liked her. My only complaint is that she talked too fast and wouldn't really listen to any of the questions I answered. She would tell me not to interrupt her. But, I guess she's busy and she can't spend all day answering my questions. Other than that, she was friendly and gave me a lot to think about.

The last resort, she suggested the electrical stimulator be placed in my stomach. But we're going to try the tests to confirm, the medicine to see if it works, and then go to the drastic surgery. I just don't want to to the gastric emptying test again or the test with the barium swallow. I'm not going to be able to keep the barium down.

Her nurse is going to check with the insurance and call me back about the smart pill. Keep your fingers crossed because that's the best test option I have. I hope it's covered. I could use some good news. I'll keep everyone posted.

I've lost close to 20 pounds since March because of the gastroparesis. I haven't been able to wear this shirt in two years. You can't really tell I've lost weight ... but I can. It's not the way I would have chosen to lose weight though. She said that I need to change my diet so I need to meet with a nutritionist - but I have to wait until after the tests. She said for me to eat less fiber and less fat. She said I could eat gluten that not eating gluten really didn't matter. I guess I should start eating it again and get another test done to see if I really do have Celiac Disease.

I just filled my pill caddy. The amount of pills I have to take is ridiculous.




Tuesday, July 10, 2012

Motility Specialist Appt Tomorrow

Well, I had a bit of a mix up today. One pain management doctor referred me to another. Now, I don't know who to call for refills. Finally, after phone calls to both offices, and after my new doctor telling me that he doesn't call in pain medicine, I finally got both of my prescriptions refilled.

Also, my insurance doesn't cover Lyrica, which is for nerve damage/pain. They will cover Neurontin, so my doctor called that in instead. I start it tonight and I hope that it helps. Maybe it will calm down my stomach enough to keep me from vomiting, pending that it stays down.

I see the Motility specialist in the morning. I'm a bit nervous and I'm not sure what to expect. I know that I need to ask her about the implant the pain management doctor recommends and how that would work with a pacemaker in my stomach if they decide to go that route. Maybe they'll do a gastric bypass ... I'm not sure. The GP is so severe that any relief would be possible.

The drug cocktail I'm on now, that I can keep down anyway, is making me incredibly sleepy. I've slept for the past two days. I'm not entirely sure if that's from shear exhaustion or the drugs.

I need to think up a list of questions for the motility specialist. I think she's going to give me a diet to follow - but I've already cut out all of the gluten. I've been almost on a liquid diet. But everything I eat, like clockwork two hours later comes right back up. Soup, drinks, etc, it doesn't matter. It ALL comes back up.

To be sure that it wasn't food spoiling in my stomach, I went two days without eating (well, I forgot to eat to be honest), so there was NOTHING in my stomach. I ate half of a can of tomato soup followed by some V8 kiwi strawberry juice. I did this around 11:30pm and two hours later, it all came back up.

I'm just tired of not being able to eat. I want to be normal again. I'd like to go and see the new Batman movie, but I can't. The smell of popcorn alone would make me ill. I want to hike and drive without throwing up. I just feel lost and hopeless sometimes. I hope this doctor can help me. I would be game for almost anything to be able to be normal. I want to finish school - I only have a year left to become a Geologist. I'm scared that I won't be able to take classes this fall unless it's an online class. Also, if I have the surgery, I don't want to start out the semester like that. I would like one semester where I can attend classes without ANY absences and coherent so that I can actually learn what I need to know. I'm just so scared.

I'm just so uncertain of what the future holds and that scares me. I really want to graduate. I've worked so hard to graduate. It's so hard to explain to my professors how sick I am. You can tell people you're sick, but they won't understand until they see it for themselves. I had friends come over to hang out with me and they didn't realize how bad it was until I went to the bathroom about 6 to 8 times while they were at my house.

I wonder if anyone else with GP has this issue. I just don't want a feeding tube. I'm scared of that option. I don't think it will come to that, but I have been losing a lot of weight. I've dropped a pants size and a bra size. This isn't the way I wanted to lose the weight. I gained a lot of weight after the knee problems. But, I didn't want to starve myself. I want to eat my favorite foods again. I know all of this sounds completely selfish because I know there are people who have this worse than me.

My mother told me today that my grandfather had something similar. He would vomit after eating too. I'm not sure if he had gastroparesis or not, and I can't ask him now, which makes me sad because I miss him so much. I am not even sure if it's hereditary.

I guess I'll have more to report tomorrow after I talk to the specialist. Please wish me luck!

Monday, July 9, 2012

Boston Scientific - Electrical Stimulator

I went to the pain management doctor for my knee. They would like to install a device, permanently, near my spine, attached to a ligament.

The link is here: http://www.bostonscientific.com/procedure/ProcedureLanding.bsci/,,/navRelId/1000.1002/method/Procedure/id/10001261/seo.serve

This also tells more about it: http://en.wikipedia.org/wiki/Spinal_cord_stimulator

This is a really HUGE decision for me. I'm not sure what to do. If the doctor does decide to put the electrical stimulator in my stomach for gastroparesis then the two would interfere. To be honest, my stomach pain and vomiting is eclipsing the knee pain. My husband thinks that if I get the implant and stop the pain in my knee, that I won't vomit so much. My pain response is to vomit. Also, gastroparesis causes me to vomit too.

I think I'm going to do the trial and see if it provides so relief. I can't tell you how badly I'd like to get out of the house, eat at a nice restaurant, and maybe catch a movie. But most of all, I want to be able to hike again. I miss hiking. It was the one thing I loved to do. Now with the gastroparesis, I can't do much but sit at home near a bathroom.

I did manage to make it to Columbia and Augusta this past weekend with the bucket in the car. I doped myself up on all of the antinausea meds I was given and hoped for the best. The traveling took a lot out of me and I slept for the rest of the weekend. I woke up sick on several occasions. I want to be able to drive my stick shift again. I hate automatics. There's so many things I've taken for granted that I wish I hadn't.

So far, I've had:
Gastroparesis
Ovarian Cysts
Endometrosis
Osteoporosis
A Septic Knee
Meniscal Tear
Lateral Release
Broken Right Arm (which started all of this mess)
Hypoglycemia

When I see all of my friends having kids, I sometimes feel like I want kids... but I wouldn't want to pass my awful genes to anyone...that wouldn't be fair. I'm like a walking case for Doctor House, even though he might kill me five times to help me. How do people manage to have kids with gastroparesis? I can't imagine how intense the morning sickness would be. I throw up six times a day, at least. Plus, it burns my throat and mouth because I have nothing left in my stomach. Half of my taste buds have been burnt off so that I can't taste anything. I'm not hungry in the slightest. The doctor also put me on lyrica, which is a nerve pain pill. I haven't noticed much of a difference yet.

Back to the big decision...I have to get a psychological evaluation before they can even try the trial because my insurance mandates it. I have that on the 23rd. I'm also meeting with the motility specialist on the 11th. I just hope that no one puts me back in the hospital. I've been so weak and tired lately. I have been trying to drink as much as I can but like clockwork, every 2 hours after I eat or drink something, it comes right back up. I'm really tired of bleaching my toilet.