GPACT

I found two pictures, courtesy of GPACT that made me feel a bit better. I'm still vomiting, even after the ERCP. I'm still in pain from healing as well.

I met with the knee doctor yesterday and he's just waiting on the insurance to improve the trial.

More information can be found HERE.

So, I guess I'll wait. Hopefully, if I can control the knee pain, the vomiting will be cut in half since it's my pain response. I'm trying to figure out if the vomiting is actually coming from my gastroparesis or if it's caused by pain. It's a hard thing to determine.

I just feel very tired and weak. I have a cold, too. I've been sleeping a lot the past two days hoping I'll feel better.

GPACT could really use your help if you are interested in donating to help find a cure. The information can be found HERE.

They write on their Facebook page:

G-PACT Fact, Day 31- As we close out DTP Awareness Month 2012, we want to thank all of you for your support!

G-PACT is a non-profit which was founded on Aug. 23, 2001 by a group of patients. Most of us are on disability from this (and/or
a combo of other conditions) and saw the needs that so many patients had. We fight this every day along with you. We are all volunteers which can make this very difficult as our health is very unpredictable. You understand! A small handful of volunteers have run G-PACT, which has become international and reaches out to over 30 countries and all 50 states, from hospital beds, nursing homes, and home computers all over the world.

An added challenge is that we do not work from a centralized location and are scattered across the world. While this allows anyone to get involved, sometimes it can also take us a little longer to get everything done.

These are two unique challenges we face as we fight for you. We volunteer up to 80 hours a week during busy times, so we appreciate your patience and support as we work hard to bring you the best that we can given the circumstances! We are inspired to continue our work because we see progress and feel that our work has made an im-PACT.

There is still time to do things from this month. We extended the media letter writing campaign in order to accommodate some events taking place this weekend. Please send us your letters so we can begin putting final details into the project. Awareness and a cure is important as the death of another member harshly indicates.

If you would like to help us in any way to continue our work, we could use additional funding to continue our work, volunteers to lighten the load on a few of us, or other contributions to help us get things done. Increasing awareness is vital and awareness events are appreciated to help spread the word. If you would like to do anything, please contact us at contact@g-pact.org. Donations can be made through Paypal at accounting@g-pact.org or on our website at www.g-pact.org/giving.html. There are many ways you can help, even if not financially. We appreciate hearing from you and knowing you support the work that we do.

We do this for you and we fully understand what you are going through! That's why we are so passionate!

Even though today is the last day for DTP Awareness Month 2012, we do not stop. We do this year round. Look for activities coming up in 2013 and many ways to increase awareness and get involved in some of our political advocacy work. We are encouraged by the approval of Linzett yesterday, and hope to see many more in the near future until everyone has something that works well for them. We all want to eat normally again! :D

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.

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.