Sunday, May 30, 2010


The past two weeks have been relatively calm. I’m back at work on a normal work schedule which is nice for my bank account. I did find some more information about the gastric pacemaker. Roller coasters are off limits as for anything else that may shake you or be rough in motion. As for flying, getting through airport check points can be a huge issue. Whenever you go through any detector, it risks turning the pacemaker off. You have to be extremely careful, even when shopping.
All of that information is not stopping me however! I am determined to get a pacemaker … if insurance lets me. I am making a list of things to do before I get a pacemaker because I can’t do these things after I get the pacemaker. I may be doing it for nothing; I may not be approved by my insurance company. There are always “what if’s”. What if I don’t do the things that are on my list? This could be the last time that I could ever get to go to Cedar Point and ride the best roller coasters in the country! I would regret it if I didn’t go and do it.
Another thing that I would really like to do would be to white water raft the Upper Gauley River in West Virginia. White water rafting is by far my favorite thing to do outside. Last fall, Jacob and I went to raft the Lower Gauley. It was wonderful! It consists of Class III – Class V rapids. There is something about when I rafting, I forget about all of the GP issues. I don’t have to think and I love that. I feel exhausted at the end of the day but so relaxed because I loved what I was doing. As for the Upper Gauley, Jacob is going to pass and a friend of mine is going to go with me (if everything goes as planned- feeding tube/pacemaker). It opens in September. It consists of forty Class IV – Class V rapids, Sweets Falls rapid being a fourteen foot drop.
I want this pacemaker more than anything right now. I am tired of having to “clean out” (if you get what I mean) every weekend to push the food on through my GI tract. I realize that I am going to have to give up some things in order to hopefully feel better but at least this time I’m getting a heads up.

Saturday, May 15, 2010

the best doctor appointment of all time!

This month marks two years of me being diagnosed with Gastroparesis and my how things have changed. I had an appointment Wednesday with my gastroenterologist and on the way back Jacob and I stopped at Chili’s to eat. On the menu, there was a Caribbean Salad. Two years ago, I would have possibly eaten that. Today if I ate that, it would either have to be pumped out of me or the lettuce would have to rot in my stomach. It took me nineteen years to learn to like salads and now I can’t eat them. I should have listened to everyone; lettuce isn’t so bad after all. (I still have this itch inside to go back to Chili’s and suffer the consequences because some foods are worth it.)
My GI appointment was the most beneficial appointment I have ever had. We discussed how much stomach I have left which is lingering around 20 percent. Several months ago I was placed on a drug from Canada called Domperidone as a last attempt. The drug is not showing any improvement or help unfortunately. As for the feeding tube, I have dropped down a couple more pounds so I am not out of the feeding tube “zone”. He did reassure me that they are not as bad as they seem so I am becoming less stressed about the idea. As for my job, he told me he would help me in any way possible which was encouraging.
The best part came when he ask me if I was still interested in the gastric pacemaker. I told him that I was still interested. To fill in some gaps, the gastric pacemaker is similar to the cardiac pacemaker. It is inserted into a surgically made pouch on the stomach where two electrodes go into the stomach and help stimulate the stomach. It can help with nausea and stomach emptying. It is still experimental so to get an insurance company to pay for it can be a challenge. When we were talking about this, I was so relieved, if we’re talking about it, maybe? Guess what… I’m on the list for a gastric pacemaker!!!! All we are waiting on is for the insurance to approve.
I have thought about possible issues with the pacemaker. It’s a fifty percent chance it won’t work. Insurance may not approve the surgery. I have met with Human Resources several times about possible medical leaves. If I have the surgery, I am playing with my Gastroparesis; it could get worse and cause other motility issues. However, I am willing to take those risks. I am twenty-three and I can do this. I may end up with a temporary feeding tube before it’s all said and done but that is okay. Everything is working itself out. Yesterday I met with Human Resources and I will be able to take a medical leave when I need one. They even told me that if I have insurance approval issues to give them a call and they will get a representative to look into my case to help me get approval. How great is that? It will be okay. Sometimes things have to get worse before they can get better.

Sunday, May 9, 2010

my visit to the pain clinic

I went to the pain clinic on Wednesday a little anxious. After working in a pharmacy for three years, you tend to label pain clinics. It’s not fair but it happens. I had this whole pain clinic scene painted in my head. I however was wrong. It was a very quiet professional setting but serious. I’m talking; I had to have my picture made and have my driver’s license scanned. Nobody can pretend to be me unfortunately.
I met with my doctor and we discussed what has been going on. He poked around and came to the conclusion that a nerve has been causing the pain. During my appendectomy or gallbladder surgery, the nerve was “messed with” and it just now started sending signals to my brain that something is wrong. It gets complicated; the pain feels deep inside my body which is confusing so it is confusing to my organs. However the pain is actually closer to the skin because it is a nerve. He said that he could numb that nerve with an injection of Lidocaine. He did not know how long the injection would work.
Jacob went with me to the clinic and came back in the room with me.
When my doctor came back in the room with the injection, I had in the back of my mind hoped to watch. He told me it would feel like a giant bee sting and it would burn for about twenty seconds. I then saw the needle followed by the syringe. That was by far the biggest needle and syringe I have ever saw or experienced. There are words to describe the pain that followed but I’m not going to say. I’m sure you get the picture. Jacob said that he inserted the needle; he moved the needle around pushing the Lidocaine out of the syringe. I thought we were finished, “injection” means “one injection” to me. He had another injection to for me. The second injection was worse than the first because I knew what pain was coming and I was already in pain. Needless to say, I didn’t watch but Jacob did. It was an interesting doctor’s appointment by far.

Tuesday, May 4, 2010

Trying to deal

I am so excited yet unsure at the very same time! It’s an odd feeling; I’m full of emotions (poor Jacob). The pain clinic called today about my referral from my GI doctor and they have an opening… TOMORROW!!! We’ll get to discuss how to manage the pain I’m experiencing in my upper abdominal area that radiates around to my back. It is neat how God works things out perfectly. Today has been an intense day, I ate yesterday so I look somewhat pregnant and with that comes pain. I considered calling in this morning because when I rolled over I thought, wonderful, not another day of this. I am not a morning person so I don’t deal well with things like that in the morning because I’m already dealing with the normal morning GP nausea. So, I laid there for a few minutes, got myself together and went to work. Tomorrow, I could have a solution to my pain!
I have been preparing myself mentally for the possibility of a feeding tube. It may sound stupid but hear me out. My biggest medical fears associated with GP are feeding tubes and colostomy bags. I just can’t wrap my head around it. One, the idea that something is going to be inside of my intestines that will be feeding me for ten to twelve hours a night. I will have to be still for that long a day. Six to twelve months is a loooong time. Two, the risks of infections. Flushing it, keeping it clean and protecting the site. And three, I cannot believe that I may have to deal with that possibility. When did my GP get to this point? I know I am being selfish. There are other people whose GP conditions are much worse. It’s just that shock factor mixed in with the numb feeling. I may be able to keep my weight above 100lbs. I don’t know exactly what the future holds; I just need to be somewhat prepared.
I am enjoying my time at home. It is nice to be able eat and not worry about getting sick after. If I get sick, big deal. Overall, I know that everything will be okay; it’s just hard to grasp that right now. God has a plan. He is not going to give me something I can’t deal with.

Sunday, May 2, 2010

An Overwhelming Week (Part 2)

So where I last left you, admittance to the hospital. Sunday and Monday were pretty vague. Blood work, numerous doctors, poking and feeling, pain meds and call buttons. I was allowed to eat and when I eat it makes the pain worse. I woke up Sunday to a breakfast of toast, eggs and grits. I don’t think so. I stuck with the toast. Lunch wasn’t much better. I had jello, mashed potatoes and a roll. Are we noticing a pattern or a lack of food variety? Get this, they brought me pork for dinner and yes I was on a Gastroparesis diet. I was shocked. I haven’t consumed anything of that consistency or nature in two years and you want me to eat that now. I had mashed potatoes and a roll.
Sunday the nurse came in with a shot… it had a needle. IVs do not need needles. It was a heparin shot. I remember people getting them at the pharmacy. Gosh do those things hurt and bruise. I have five bruises across my stomach in a line for proof. However at night, I took Ambien and Dilaudid to help with the pain and sleep. When I took those, I never felt or knew I had the heparin shots. I woke up one day and looked at my stomach and noticed the bruise. I asked Jacob if I got a shot during the night and he said yeah, they came in four times. I never knew.
Jacob was wonderful. He stayed with me every night except the first. As I mentioned before, I would not let him. I am the stubborn one in our relationship. He has accepted with my diagnosis with such grace. He has patience with me. Since my diagnosis, I have learned at lot about life planning and patience. I have a lot to learn though.
Monday evening the GI doctors decided to do an endoscopy to make sure that everything internally was okay. On Tuesday everything checked out. The pain was still there. The doctor overseeing my case came in to talk to me later that afternoon. We talked about my GP and how life had become more complicated at work with eating. After discussing several things, he asked me if I had ever considered taking a medical leave from work or having a temporary feeding tube. When that registered in my head, everything stopped. Nothing else in the world mattered to me at that moment, which is selfish I know. He decided to discharge me and let me follow up with my GI doctor the next day. While being discharged, the PA from the GI department came by. We talked and she felt around and found a tender spot. She said that she would talk to my doctor about it and he’d give me a call.
Wednesday, I didn’t leave my cell phone out of ear’s range. I always lose my cell phone. He finally called. We started at the beginning and went through everything. He told me my CT image was not good. He asked me when I ate on Saturday. I told him I ate lunch around twelve or one. Well, the CT was performed around nine or ten that night and my stomach still had a good portion of food in it. Not good! He told me my stomach was bad. It was as plain as that. He asked about my diet and weight. After discussing it, I told him that my hospital doctor mentioned a feeding tube. He told me yes. He said that at my weight, if I cannot get enough calories to sustain the weight of 100lbs or above, I would be getting a feeding tube. I was numb. It was true. He told me that I should not be afraid of them; they are only temporary, six months to a year.
The whole feeding tube ‘issue’ has left me feeling overwhelmed and numb. I know that most likely I’m getting one. I’ve dropped ten pounds in four months. I only have five pounds to go and I have been fighting to keep this weight. Another liquid diet could drop those five pounds.
I’ve been out of work for six and a half work days. Somehow I got put on medical leave. My employer will evaluate my doctor’s notes about my condition and decide if I can work until I have a flare up and then take several days of my medical leave. I don’t want to sit at home for three months and then get back to work and have more GP issues. I have discussed this with my doctor and he told me that it was up to me for when I think I need to take a medical leave. I planned on going to work Monday. When I mentioned this to HR, they told me I could not work until my doctor said that I was capable. Well I called his office freaking out, it was Friday afternoon and he is going to be out of town next week. I want to work people! The doctor’s office asked why I was going back to work. Ummm….. To wrap this up, they are allowing me to work two hours a day. That is what I am capable of at the current time.
I feel so overwhelmed. I knew that most likely one day I would be faced with taking a medical leave and maybe a feeding tube but I doubted that one, it bothers me. I am twenty-three. I am having trouble processing all of this. Do I do this, what will happen if I do this, it goes on and on? I want to get married in the next one to two years. I told Jacob, how you think it will look with a feeding tube or port under my wedding dress. I never in my wildest dreams thought I would be dealing with this at my age. You can’t plan life.

Saturday, May 1, 2010

An Overwhelming Week (Part 1)

Have you ever felt overwhelmed? Over the past eight days, I have heard and faced more things than I ever expected to at the age of twenty-three. I knew these things were mostly likely coming, just not this fast. (I am going to break this past week up into two long blogs. I told you, it's a lot to take in.)
As I mentioned several blogs ago, I had a sleep deprived night due to my Gastroparesis causing pain. The pain returned a week ago Thursday. It was accompanied by nausea and the losing of food. It started that morning at work around 11am. After having GP for almost two years, if I am dealing with the symptoms that early in the day, it's going to be a rough day. I went ahead and took the normal medications, Librax, Bentyl and ibuprofen for the spasms and pain. I was determined to eat lunch and I figured that eating might help. It never does but for some reason I wasn't thinking straight and I ate. I made it through half of my lunch. I had walked up to the dining hall in hopes of easing the pain because I have learned that walking helps with motility due to the effect of gravity. I was so nauseous, in pain and weak feeling I bummed a ride back down with a friend. Needless to say I left work for the day and spent the remainder of the day on the couch with the heating pad.
When I went to bed Thursday night I planned on going to work Friday as usual. I am learning you can't plan life especially when you have a condition that has no cure. Whenever I woke up Friday morning, oh my gosh what pain! It was all I could do to roll over. I have been through the appendectomy gallbladder route and this pain did not compare. I called into work and said that I'd be in later that morning. I called my doctor's office and told them what was going on. I was told to back my diet down and be sure to take my medications. Are you freaking kidding me?!?!? I am holding the tears back on the phone. I am taking my meds, I promise. And to make things just a bit better, you're telling me to back my diet down? There's nothing below mashed potatoes, trust me I've looked. I refused to do another liquid diet and deal with the pain. I managed to get ready for work and between getting ready and the pain I was finished. I called back into work and asked to take the day off. Like the previous day, I stayed on the couch with the heating pad.
Saturday was Saturday. Jacob and my mom were at a seminar, my dad was out of town and Chase was at work. I was going to have a day of peace and quiet. I had rented a few movies to watch and just planned to lay around all day. The pain was getting to me and being at home on the couch for the third day, I wanted to get out for a little while. I ran into my God-mother and she noticed that I still wasn't back to normal. I caved. I had been doing my best to walk around that store, shop and be pain free and normal! I told her to take me to the emergency room at Wake Forest University Baptist Medical Center. Before we left I did get lunch in. I have learned from previous ER experiences, eat before you go because who knows when you will eat again.
I was going in hopes of getting something for the pain. When I was being checked in, after giving my medication and what was wrong with me, my nurse told me I needed to go see House. I have never been admitted that fast before. I was prepared to educate my doctor on what GP is but I did not. It was wonderful! My doctor was from Ghana and he knew and understood GP. They did the normal things, IVs and blood work. When I heard Zofran for nausea and pain medication, I was good. After having them poke and push on my stomach, I needed something. I had previously had my nurse so that helped ease the ER experience. She told me that the pain medication she was giving me would giving me a head rush and make me dizzy and sleepy. WOW....... she had just finished removing the vial and I got the rush. My godmother said I was so stoned. I then went to X-Ray and later CT. In between the pain got really bad, I'm talking get the doctor now! I need something stronger! They were surprised that I was still in pain so I got more medication and the pain backed off. The main doctor over the ER came over to talk to me about moving me to more comfortable place. At midnight we moved to a holding room with two beds, thank goodness I was the only patient. During this I was still messed up from the drugs. We spoke to Internal Medicine and they decided to admit me. Half of the Gastro doctors were stuck overseas due to the volcano and my doctor was out of town. I finally got into at three. Thanks to my godmother, I didn't know a thing until around seven the next morning. She was playing defense. She told me that she told the nurses, we've not slept, she's in pain, leave her alone. I love that woman.
The next morning I woke up to my mom and brother also. They had came down to relieve my godmother. Jacob stayed in Wilkes by my doing. I made him stay. There was no reason for him to come to my closet of a room and sit while he could be in Wilkes doing what needed to be done. I assured him that we will have many more hospital visits.