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Wednesday, September 26, 2012

After Surgery - Day 2

Well, surgery went well on Monday. I was amused because the anesthesiologist had to come in and place my IV because the nurses were too scared to poke me. The nurses said they didn't see anything so they didn't want to poke me 8 times. I agreed with them and thanked them for not doing so because I've had some horrible nurses who have stuck me up to 18 times, no exaggeration.

The IV went into my right wrist, so it was in an odd place. The anesthesiologist gave me the medicine to put me to sleep while the doctor was injecting numbing medicine into my back. I yelled ow a few times and he injected more. The anesthesiologist asked me if I felt the medicine yet and I shook my head no. She gave me two small syringes of something plus versed. Then, pushed the Propofol, twice. The doctor realized that my IV wasn't working and went over to my wrist and pressed down on it at a funny angle...and then ALL of the medicine hit. I don't remember anything after that, not even being woken up to see if the spinal cord stimulator (SCS) was working properly in the right area. I woke up and the anesthesiologist moved quickly to unhook my IV because the Propofol was still in there heading to my vein, trying to make me sleepy again. I was amused. The staff at this place are great. I would recommend them to anyone who needs pain management. Their bedside manner is fantastic and it's hard to find a doctor who will actually listen to you first.

After they taped me up, I went into recovery where they fine tuned the SCS with a computer. They gave me a remote where I could control the amount of stimulation myself or turn it off while driving.

I laid down when I got home from surgery and laughed so hard because the stimulation was turned all of the way up. I had to wait for my husband to bring the remote inside.

Last night, I slept without tossing or turning, which is something I haven't done in a long time because I couldn't feel pain in my left knee. I was able to walk around more. It was nice not to have that constant sharp pain along with aches. It was all gone.

Then, I went to sleep the wrong way with my back brace on and moved the leads. Now, they will only work if I'm sitting a certain way or if I lay down. So, I called the doctor and asked them to pull the leads out and that I would like to have the permanent implant done. The Rep for Boston Scientific (who represents this machine I'm using for the SCS) will call the doctor and put me on the schedule to have the leads pulled out tomorrow, which is good because I'm allergic to this tape. It itches like crazy!

So, I will be put on the schedule to have this one permanently and I'm excited about it. If I can get this under control, maybe I won't vomit as much because vomiting is my pain response too.

Then, I can just focus on my stomach. I need to get that taken care of. I have an appointment with the GI doctor on Monday and an appointment with the Nutritionist to go over a diet plan later next week. I'm still severely nauseated, but not as bad as I have been. That could be wishful thinking on part of the temporary implant but we'll see.

I'm just excited to finally have my knee taken care of and to have finally found someone who will help me. Then, I can focus on my stomach.

Pictures of my back are below:

Monday, September 24, 2012

Pre - Surgery Today For my Knee

The doctor is going to do the surgery for the Boston Scientific Electrical Stimulator trial. They are going to put me under, put the leads in, wake me up and adjust the electrical pulses, and then put me back under to complete everything. I will know in a day or three if it works or not. If it works, the doctor is going to go ahead and schedule the permanent implant surgery.

My husband thinks that this will cut my vomiting in half. His reasoning is that vomiting is also my pain response, so it's hard to tell what's gastroparesis and what's my knee. After this, I should know.

I have an appointment with my doctor on Tuesday to talk and follow up. I still need anti-nausea medicine. It helps me function. Without it, I vomit about 8 times a day. It does help keep the vomiting down. I'm just frustrated and tired of vomiting. The doctor wants to figure out why I'm vomiting so much. He says that with gastroparesis that I shouldn't have stomach pain or vomiting. Since the ERCP surgery, I have had less pain. It's no longer sharp and stabbing. Now, it's more like intense stomach cramps.

I had a funeral to go to last Monday and they made me take communion. I was scared because I haven't been able to keep much down. The priest dipped the wafer in the red wine (my stomach can't handle alcohol) and gave me communion. I tried not to vomit up the Body of Christ because it would, in all honesty and jokes aside, make me feel awful. I kept it down for the funeral, so I did not vomit up the Body of Christ on anyone. My stomach behaved until I got home but I had horrid cramps and pain. I also started vomiting again. It's been a rough week with the death of my aunt and then the surgery today. I'm just grateful that I didn't get sick in the church.

I also have an appointment with the Nutritionist next week to go over a diet plan and the insurance doesn't cover it. So, it's going to be $100 a pop to receive advice about my diet and eating habits.

I'm really nervous about the surgery today. The last time I had surgery, I stopped breathing. Now, I'm scared that I won't wake up. I just want to feel better. I'm also worried about the IV placement. The nurses can never find veins. They had to put in a pick line in the hospital. I just don't want to get poked about 12 times.

Well, I will keep everyone updated. My surgery is scheduled for 2pm.

Friday, September 7, 2012

Feeling a Bit Down but I Have Hope

I am feeling a lot better since the surgery. I'm still in a little bit of pain because I haven't healed all of the way. I feel it every time I eat, which is conditioning me not to eat. I'm trying. The vomiting is still occurring but I'm used to it at this point. I'm able to leave my house more even though I still have to carry a bucket. But, that's OK. At least I'm more mobile now that I used to be.

I'm mostly upset because people have been saying that I'm too sick to think for myself - which isn't true. I may have a chronic illness, but I've got full control of my mental faculties. It hurt my feelings but I'm going to move on from it. People are entitled to their opinions, and I can't change it.

I am still waiting to hear back from the knee doctor about my implant and back surgery. I'm waiting for my insurance to get back to the doctor about the trial. I hope to hear something from them soon because I really miss hiking. I'm hoping that the trial cuts the vomiting in half, since that's my pain response also, so that I can get on with my life. As a Geologist, I'm going to be required to hike. Plus, it's something I love.

I thought about trying to attempt to do Yoga on the Wii Fit because I miss Yoga, too. But, I may need a chair for balance. I can't decide if it's a bad idea or not. I can't squish my stomach or I'll regret it later. I may not have any structural damage to my knee but the nerves are still misfiring. I really need to see a neurologist. I need to figure out the cause of all of these nerve issues. Gastroparesis is caused by damage to the vagas nerve and my knee has nerve problems as well. It's just too much of a coincidence to ignore.

Other than that, I'm feeling much better than I have in months. I'm getting used to this illness. I've lost a bunch of weight, so some of my clothes no longer fit. I need to go shopping for new clothes. It's not the way I wanted to lose weight but I've lost about 25 pounds so far.

All in all, I am feeling optimistic. I have hope now. I didn't before. I think I will be able to live with this and be fine. I need moral support, certainly, and not people tearing me down. I know it gets frustrating to listen to someone complain about being sick all of the time, but please be patient with me. I'm trying my best.

Wednesday, September 5, 2012

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.