Another Sleepless Night & Another New Symptom

I am so exhausted.

I can't sleep and all I can do is to curl up in a ball and whimper. The pain hurts. It's one huge spasm after another and the vomiting makes the pain worse. I'm pretty sure I pulled a muscle in my back vomiting this last time.

My fraternity's local alumni association had a holiday get together today. My husband is deeply involved in this organization and he's been here to support me, so I wanted to be there today to support him. The holiday get together was at a local soul food restaurant. Now, just the smell or image of food had me gagging this week, but I was determined that I was going to get through this lunch. I felt like I was marching to an execution and praying I didn't get sick at the restaurant. I took all of my medicine before I got into the car which includes Bentyl, Levsin, Zofran, Phenergan, Zanaflex, and my vitamins I've started taking. I added a multivitamin to the mix along with Vitamin B, because that was recommended to help my new symptoms of confusion. I've also been trying to add more potassium to my "diet."

I was quite proud of myself. I didn't get sick in the car and when I walked into the restaurant, the smell didn't knock me out like I thought it was going to. I managed to make myself eat a teaspoonful of dressing, two teaspoonsful of lima beans, and a few bites of banana pudding. After that, I was full. Also, a new symptom developed. Right after I ate, my belly started to swell. It looked like I was pregnant or that I had a balloon under my shirt. It was very uncomfortable and full of cramps. I actually had to change my pants later because they were too tight after I ate.

I managed to last the entire lunch without vomiting several times. I had to leave and get some air towards the end of lunch because the smells were making me extremely nauseated.

After getting into the car, the nausea became worse. Nothing helped. Not looking outside, not counting trees, not trying to relax, nothing. My stomach felt like someone was banging on it with a hammer. It was this intense, throbbing, sharp pain. It continued to do this until I got home. The spasms started happening and then I started vomiting. At least I had something in my stomach to vomit up, so it wasn't just stomach acid. My throat is still rather swollen from previous vomiting and it probably sounds and looks like I have strep throat.

I was up all last night vomiting and now I've been up all tonight vomiting. One of my friends said something, probably not meaning to be offensive but it came out that way, and I finally just broke down and cried. I sat there and cried for a good two hours. My wonderful husband, who lost his father this week, sat there and held me while I cried. He didn't ask what was wrong, he just stroked my hair. I felt so guilty because I feel like I should be comforting him, you know?

After crying, I vomited again. At this point, I left my bedroom to come upstairs to watch TV. I don't want to wake my husband up and my stomach isn't going to let me sleep anytime soon.

I managed to read all of, Gastroparesis: My Personal Journey and realized that I have the same symptoms. This isn't in my head. I can't tell you how many doctors have told me that the sickness is in my head and nothing more. I've had several friends remark about how strong I am but I don't feel strong. Then, I read something like this book and what this woman went through and it motivates me to be an advocate for myself.

I'm going to stick with facts and what I do know. I know that I vomit 6 to 8 times a day. I know that I'm dehydrated. I know that I'm still technically overweight but I've lost about 25 pounds since I was diagnosed. I've dropped a bra size and pants size. I can put two photos of me side by side from this year and last year and you can see that my face has thinned out considerably. I know that I look sick and that my skin is a weird pasty color. I know that if I make myself eat, even small and frequent meals (liquids), I will vomit.

I know that I can't leave the house without a a bucket of some sort to vomit in. I know that I have a year of college left and I'm not sure how I'm going to go to labs. I know my GI doctor doesn't know what to do for me at this point so he's referring me to the Mayo clinic. I know that I have mental confusion, depression, and my stomach becomes really swollen if I do manage to eat something. It doesn't matter what I eat, it all comes up. Liquids, solids, gluten free, gluten, etc. I've tried all of the different diets. I know that I'm scared (and I have a suspicion that I have an autoimmune disease at the heart of this problem - but I don't know what I've been tested for).

I also know that I am determined. I know that other GP fighters suffer worse than I do. I know I have loving family and friends who support me, even when I post six million times a day on Facebook to keep myself distracted. I appreciate all of the help my husband has given me and his support. Without him, I'm not sure I could do this. I know that I've found a wonderful support group online that has helped me so much with venting and answering most of my gastroparesis questions. Also, it makes me feel better to know that I'm not the only one.

I know that I'm going to keep fighting.

Motility Specialist Follow Up

I had an appointment at 8:30am this morning with the Specialist but let me give you some background on the past two days. I was up all night, really, really nauseated. I took my pain medicine and my anti-nausea medication but it did nothing to get rid the knot in my stomach. To explain how my stomach feels - imagine you're nervous before a test and your stomach is in a huge knot. Then, add an intense burning, sharp pain like you've been sucker punched in the stomach with an ulcer. Then, imagine that you had food poisoning and you just felt like there was a giant greasy ball just hanging out in your stomach. If you combine all of those feelings, that's how I feel on a daily basis with the nausea. That's the best way I know how to describe it.

So, I was up all night getting sick. I thought maybe the vomiting would help but my stomach managed to spasm enough that I pulled a muscle.

I had an appointment scheduled for the Motility Specialist, which was lucky, and got to go in this morning to talk with her about my Smart Pill results. She said that the Smart Pill did show a delay in my gastric emptying, confirming what I already knew, I have gastroparesis. She told me I needed to follow up with my GI doctor now, so I'm wondering what was the point of seeing the Specialist if she's not going to treat me for this rare condition.

She did prescribe an antispasmodic, which should help with the pain after eating. That's leftover from the ERCP that my regular GI doctor did. However, both doctors cannot explain the vomiting. The best theory that I have gotten is from my regular GI doctor - the food that I eat sits in my stomach for days until I get food poisoning and vomit it up. So, essentially, I always have food poisoning. I have to make an appointment with the Nutritionist and come up with a diet plan.

Vomiting is also my pain response, so I hope that once I get this trial for my knee, the vomiting will be cut in half.

The Specialist then told me to see my psychiatrist because I'm already on an antidepressant and anxiety medication. The drug to help treat this is also classified as an antidepressant. You can read about Nortriptyline HERE.

I called his office and I'm waiting for him to give me a call and let me know if he will prescribe it. I just saw him two days ago, and he knows about my gastroparesis. I don't think he'll have a problem prescribing it but I would like to start it as soon as possible since it takes a while to work. This should help with the gastroparesis, some. I don't understand why the Specialist couldn't just prescribe it. It's not controlled. I get the drug interaction thing but she knows ALL of the medications I'm on. Oh well, I'll wait around and see what my other doctor says.

So, that's my news. Gastroparesis is confirmed, which I already knew it would be. I've had the ERCP and I'm going to try this medicine. I would really like to have my normal life back. I miss being a social butterfly and I miss leaving the house.

My friends and family have been a great support network. I cannot tell you how much it means to me for the encouraging words, funny pictures to cheer me up, coming over to hang out because you know I can't leave the house. It really does mean so much to me. And of course, for reading my blog. I wasn't expecting for it to be as popular as it is. I just wanted to say thank you to everyone for being there for me. It really does make me feel better knowing that I have such great friends and family, and of course, a wonderful husband. I honestly could not get through this without you guys.

It's also nice to feel validated that this isn't all in my head. I've gotten that from a few past "friends." I felt isolated for a while because people viewed me as negative and attention seeking, but I know my body better than anyone and I'm glad I stayed persistent. I try not to be negative but I have bad days just like everyone else.

If there is anyone out there who reads this blog and has medical issues, my advice is to find a doctor who will listen. I cannot tell you how many bad doctors I've gone through until I found someone who understood and helped. Keep trying. I know it can be discouraging but you have to be your own advocate.

My doctor was right about starting this blog, though. It has helped me to get everything out and to channel those negative feelings into something positive for someone who may have the same issues I do without a diagnosis. I think my friends understand me better now, too. You can tell someone you're sick all day long and they'll get annoyed at you for always being sick, but you have to help them to understand. This doctor is the best doctor I've had yet and I'm glad that I finally know what's going on.

It's hard living with a chronic illness and it can get you down ... but be strong and fight back. I am going to. I am determined to lead a normal life again, and I will; one day at a time.

Severe Emotional and Physical Pain

For the past few days, the abdominal cramps have gotten so much worse. I've had esophageal spasms more than I usually do. My stomach feels like I've been sucker punched and I have NO interest in eating at all.

I've been keeping a food diary to keep track of what and when I eat and I haven't eaten very much in the last week. I miss food. I hate that food is the enemy. I don't understand how I'm not losing more weight though. I mean, my weight, I've lost about 15 pounds total, but now it's staying steady. But I'm not really eating...so I don't understand.

My friend has been staying with me and she helped take care of me this past weekend when everyone was gone. My husband was at a convention, my roommate was in San Fransisco, and my other roomie was visiting her parent's. I'm glad my friend was here because I went hypoglycemic about four times. This is still new to me but she was able to make me eat and get some food in me, it didn't stay down, but it got me to stop slurring my words so I guess some of it stayed down.

I'm frustrated and tired. I just want to give up. I've got a lot of unnecessary stress on me right now and it's making me feel worse. The depression has really hit me today and usually, I'm not a depressed person. I had dreams last night and each dream had me buried alive or trapped in some way. It was horrible.

I'm worried about school and if I don't take this one class I need then I have to wait ANOTHER year to graduate. However, at the rate my stomach is going, I won't be able to take a class because I vomit about 6 to 8 times a day, even if there's nothing left. It burns. My throat is so swollen that I can barely swallow pills. I have no energy today. I feel drained. Emotionally drained too, like I have just gotten done with a funeral.

I'm really just upset and sick. Last night was horrible. I need to get out of this house, somehow, for a little while. I really want to go and watch Abraham Lincoln Vampire Hunter to get out of the house. I know that the smell alone will make me ill but I wonder if it would be worth it, just to get out. Or even have my husband drive me around the neighborhood to the park so I can swing for a bit. I just need to do SOMETHING! I feel useless and unloved, which is stupid because I know I'm loved.

My birthday is on Saturday. I was looking forward to my party because it's zombie themed and everything is just going to be amazing. But now, I just am so lethargic that I feel like, why am I doing this? I don't have the energy for this? I just feel so extremely tired - like the fight is gone out of me. I'm tired, so very tired.