and Finally some good news!

Today was the pain pump trial.  They moved it up after my last visit into the emergency room.  I was told that I needed to bring comfortable clothing and someone to drive me home.  My dear husband works at the hospital, so I had the nurses call him right after the procedure was finished. He loves me so much that he couldn't wait for them to call him and showed up just as it was finishing.

The procedure was a bit nerve racking. They allowed me to keep my clothes on (T-shirt and sweatpants) and took me into a surgical room right off of the pain clinic. The doc told me to curl into a ball so my back was rounded. I apparently am so limber that I curled up too much for him and he had me uncurl about half way! LOL  They then numbed my back and stuck a catheter into my spinal column. It was the weirdest feeling in the world. It wasn't painful, but it felt like an intense pressure and I felt an anxiety attack coming on. I remember asking them if they were finished, and they indicated that they hadn't even injected the medication yet. As they pushed the Prialt into my spine, i felt both a cooling and burning sensation at the same time. Then it was over. They wheeled me back to my room (where I was surprised to see my husband) and waited. I was told that I'd be there for about 2 hours while they monitored me. About a half an hour into waiting I began to feel my stomach pain decrease. Then it started to decrease at such a fast rate that I almost started to cry. It was an amazing feeling to experience no stomach pain.  I've lived with a pain on the 1-10 scale at about a 4 as my low level since I was diagnosed, and I could definitively say that my pain was at a 0 once the medication kicked in. The relief was extraordinary!  But then.....

About an hour after the procedure I headed to the restroom to relieve myself and experienced vertigo like I'd ever felt before. The room was spinning so much that I couldn't see straight. I don't remember how I made it back to the room, but as soon as I got back I began vomiting because of the dizziness. The nurses felt that it was basically the result of too much medication and tried to calm me down, explaining that I won't get nearly that amount of dosage if a pump is implanted. They were scared that because of this reaction, I would give up and not want to go through with the actual surgery. I told them to go ahead and schedule it - I wanted the surgery. I wanted the pump because that was the only way I could get the medication that allowed me to be pain free. I needed to get my life back and this was the first sign I'd had in a long time that would lead me in that direction. My dear husband took me home shortly after the vomiting stopped and I slept for the rest of the day in dreamland....

Pain Pain Go Away Come Again Another Day...

Another ER visit...  I fought it really hard this time, but I just can't take this pain anymore. I have the visit with the pain clinic for the trial on Monday, but that seems so far away.  The visit left me in more tears that when I arrived though. I am now convinced that either they don't believe how much pain I'm in or they think that I'm a drug seeker. I don't want drugs. I just want something to get rid of the pain. I hate it that the amount of delaudid that they give me doesn't work. It's not my fault it doesn't work. This time I had a social worker come and talk with me. I think they were wanting a psychological evaluation to see if I really needed the medical help or if I was just seeking more drugs. I am not like that. I hate that someone even thinks that I'm like that. The first thing that the PA said to me after they admitted me to the room was "We aren't giving you any IV pain meds". I don't care. Just take away my pain. I wouldn't be here if I wasn't in horrible pain. Now you are making my head hurt on top of the stomach for not believing me. The only good thing about this appointment was that they spoke with the pain clinic and got my trial moved up to tomorrow.  As soon as they offered to send me home, I took it. I can't be somewhere where I'm being treated as if I'm a bother to them - as if I'm wasting their time - as if I am seeking drugs - as if there is no one here that cares about me.

Intrathecal Pain Drug Pump

I received a call from the pain clinic a few days ago and they said that after the doctor reviewed my chart and records sent over from my GI specialist, that the doc would like to meet with me and discuss the option of a pain pump.   I'd heard about them, but wasn't really sure what was involved. I did some googling and thought "this might be something that I could really do".

I met with the doc today and he told me about the Medtronic Intrathecal Drug Delivery Therapy. Basically, it's a drug pump that delivers pain medication directly into the spinal column at a continuous rate. The pump and the catheter are implanted underneath the skin through an outpatient procedure. The drug that they would be using is called Prialt and the best thing is that it's not a narcotic. Many of the doctors have mentioned to me over and over again that the narcotics that I'm on are also slowing the motility of my stomach and that I need to get off of them. This will help me do so.   They are going to schedule a trial run for me to test out the drug so I can be sure that 1) it will actually work on my pain and 2) that I don't have any allergies or side effects from the medication.

The pump itself is programmable, so the doctor can regulate how much drug I am receiving. They will most likely have to "play" with the amounts until it's just right for a bit after the surgery.  He told me that I can decide where I would like the pump to be implanted, and I have decided that if I get it, I'd like it on my left side, since I tend to sleep best on my right side. Because I'm skinny at this point, I'm pretty sure that the pump will be visible once it's implanted. The pump itself is about 3 1/2 inches wide and about 3/4 an inch deep. Pretty big compared to my tiny 108lb body.

I'm excited about this trial. It's been scheduled for Monday the 28th.

http://www.medtronic.com/patients/chronic-pain/device/drug-pumps/what-is-it/index.htm

 

Idiowhaaaa??

Idiopathic: adj (id-ē-o-ˈpath-ik) : arising spontaneously or from an obscure or unknown cause

That's what my gastroparesis is, idiopathic. They have absolutely no idea what caused it, where it came from, or if it will just as spontaneously disappear. I truly hope that the last is the case.  Most of us with GP have diabetes, I do not. The Vegus nerve that controls my stomach contractions has just decided to send pain signals instead of contract signals. This is one of the most frustrating parts about my disease. Not knowing.

I have now been on a liquid diet for about three weeks - consisting of broths, instant breakfasts', smoothies made from juice and yogurt, and any other liquid I can consume in 4 ounce increments. I have lost at least 10 lbs, thrown up, gotten nauseous, been in pain, gotten dizzy, and learned more than I ever wanted to know about this invisible disease. It's called an invisible disease because if you just looked at me, you would never know that I was sick. You would have no clue that I struggle to digest liquids, that I am exhausted all of the time, and that there are moments that I'm in so much pain I want to scream. I hide all of this from the outside world because I keep telling myself that I'm not sick. That this is temporary. I will get better. I have to believe that I will because believing the opposite can only make me feel worse. I am lucky to have such great support from my family, friends, and co-workers. As much as they try, they can only slightly comprehend what a daily struggle this is. I long to take a bite of that food that smells so good. My jaw aches to crunch on a pickle or bite an apple. I could. Technically, I could eat anything I wanted, but I know that doing so will cause myself so much agony in the following hours that I restrain from doing so. Gastroparesis has consumed my life. I try not to talk about it all the time, yet my aching stomach does not let me forget. Sometimes we all just need to wallow so we have a hole to crawl back out of. That's what this is. I want to feel better and only by wanting it can I achieve it. It's like looking in the mirror and telling yourself that you are beautiful over and over until you truly believe it. Telling myself that I'm feeling better will eventually lead to a day that I wake up and don't think about how crappy I feel.

This is my last post about while in a fowl mood. I will post updates on my progress and vow that even if they are not as pleasant as I hope, I will find that sliver of a silver lining in a truly baffling situation I find myself in.

RIP Herr Fritz Schutzhund

 



Sad day at our home.  We had to let our beloved friend go across the rainbow bridge today. Fritz lived to the ripe old age of 13 1/2 and passed as gracefully as an old man could. He will be missed by every member of our family because he touched our hearts in so many ways.

Fritz's final days were spent surrounded by family and friends. He ate special treats and smelled all of his favorite spots, but his poor legs would finally let him do no more. They gave out before his mind did and we could no longer help him outside with his dignity.

 Goodbye Fritzy.  You will never be forgotten. You will live forever in our hearts and we will see you soon.  We may have had to carry you into the vet's office, but you got to walk out next to us on your way out the door.

Gastroparesis

Well, for the first time on this blog, I have something to be in a "fowl mood" about. I was diagnosed with Gastroparesis - or a paralyzed stomach on the 22nd. It started with an undiagnosed stomach pain a couple weeks ago. I continued to have the pain off an on until it landed me once again in the emergency room. I work in the ER, so luckily I was already where I needed to be and surrounded by not only the best nurses and doctors, but also once who were great friends. My hubby came up from his department to offer his love and support as well, of course. Upon admittance, they still weren't sure what was causing my pain. The original thought might have been pancreatitis, but they needed a CAT scan to confirm. I was given the contrast fluid and a couple hours later sent down for the scan. After coming back, my physician came in and told me that they had an idea of what it was. It wasn't that they found something directly wrong on the scan, instead they realized that even after 2 hours, the contrast was still sitting in my stomach and had not left. My stomach was not contracting to pump out fluids. They drained my stomach and the pain immediately decreased. I was put through a gastric emptying study where I had to eat radioactive eggs and was scanned every hour for 4 hours to determine how far they eggs got in my digestive system. They didn't get far. In fact, 95% of them were still left in my stomach after 4 hours. It was confirmed. I had gastroparesis. My stomach would not empty on it's own. I was given medication and put on a liquid diet. After that, pretty much left to my own devises. I see a GI specialist to follow up in a few weeks, we'll see how I am at that time.

http://www.g-pact.org/
Gastroparesis Patient Association for Cures and Treatments

Today's "Grandma Journal" question:

Did you ever need stitches?

The first time I ever had stitches was from a dog bite. I had to have three stitches in my right arm after a dog bit me on my uncle's property. He was a hunting dog that was tied up under a porch. We were warned to never go near the dog, but I loved animals so much that I didn't see the harm in going to look at him. How wrong I was. He immediately attacked me and tore up my arm (as well as biting my stomach and buttocks, but those were just puncture wounds). I thought three stitches were a lot of stitches when I was young!

Putting my foot down

Yesterday I went to the doctor's office to see about this pain in my heel that I've been having for the past couple weeks. It hurt when I stepped on it first thing in the morning, then it started to feel better as the morning moved forward. After being on my feet all day long it began to hurt again. I was diagnosed with plantar fasciitis. Basically, that's the inflammation of the tissue that runs from your toes to your heel, forming the arch of your foot. The pain, however, is only felt in the heel.  I was given a steroid shot in my heel for the pain. Talk about painful! Doc gave me a numbing shot at first and I couldn't help but say a few choice words when that needle went in. He told me that the steroid needle was much bigger, so i decided to go ahead and thank him for the numbing shot. I believe that the shot was the most painful injection I've ever received in my life. I've had tattoos that took an hour to apply, IVs inserted into both hands at the same time while in an ambulance, and many other immunizations - those never came close on the pain scale to this one small litocaine shot!

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004438/

Today's "Grandma Journal" question:

Tell about a childhood illness that you remember.

I was about 6 or 7 years old and visiting my grandmother in Illinois one summer when I came down with a virus of some sort. I don't remember being nauseated or anything like that, but I remember being so sick that I began to run a very high fever. My fever began to sore higher than 104 degrees. We were miles away from a hospital, so my parents and grandparents did the first thing they could think of to lower my temperature before it got too high and caused brain damage (apparently it worked too!). They put me into the bathtub filled with cold water and ice. I remember screaming because it was so cold. I didn't like it at all! They held me down in the water as long as they could, then left me wet to keep my body cool - returning me to the bed.  I was shivering from the fever and the cold and in my young mind felt worse than I did before. I'm sure my fever must have broken because I don't remember going to a doctor for that illness, but I will never forget that bath! It must be why I refuse to take cold showers when I'm hot or why I refuse to go swimming in a pool that isn't heated. I hate cold water.