Sunday, September 27, 2009
Caudal Procedures... Not fun. The night before I did my first procedure the doctor casually told me while I was in a group of about fifteen people that I'd be doing a procedure tomorrow. I looked at him like "Wait, what EXPLAIN!" He told me that I would go upstairs for about 20 minutes get stem cell shots in my back then lay in bed for a couple hours. I had no idea what that meant exactly, but I knew to trust him so I said okay. Even though I'm numb I still want to know if something should hurt and if it should how painful should it be. Everyone was giving me different answers about it, saying well it hurts, but not that bad or along those lines. One person kept repeating over and over again that it was the most painful thing they have ever experienced. The rest of that night went fine, and I was supposed to start my procedure at 10 in the morning. I ended up going around 11:15ish. They hoisted me onto a table and the table was then lowered so my head was towards the ground, I felt like I was going to slide right off. Two nurses had to hold my legs down so I didn't slide around. The doctor then took a needle and went to the very bottom of my spinal cord and shoved the needle right on in. He then injected three doses of the stem cells in through that needle. It took about twenty minutes to do the whole thing, roll me in, get me on the bed, do the shots, and get me back off the bed and into my own room. I had to lay flat on my back and the elevator here isn't big enough to hold a stretcher so two men had to hold each end and carry me down the stairs that way. That was so scary I could have sworn I was starting to tip. They got me into my room and transferred me back in my bed. Then came the best part of all of it. They lifted the bottom of my bed up and stuck two bricks under each leg to keep me at an angle. Nobody really told me how long I was supposed to lay on my back for, but my nurse said five hours (others have said four.) I tried to rest for about an hour or two, but then I "woke up" and wanted to move and do something. I then watched old episodes of Melrose place for two hours, and after that got SUPER bored and restless. After finally being told I could move I got out of the room so fast and went down to the lobby to just hang out. The worst part of the Caudal Procedure was that I psyched myself out when they were giving me the injections all because I was imaging what that one person was saying about how it was the most painful thing. I was freaking out because the last thing I wanted was to suddenly feel the most pain ever, and I didn't stop to think about all of it. That one little thought wouldn't leave my mind and I was suddenly getting flashbacks of all the pain I have experienced and that is the last thing I would ever want, to have all that pain again. I've learned from that one experience that no matter how much pain it will take, I am going to do it to get myself well. I'd do anything to be healthy again so pain I guess isn't that much of a deal. I will never fully understand why I freaked out so much, but now I know.
Friday, September 25, 2009
We had been wandering around Haus Khaz Village for about an hour or so when we reached the end of a road and found some Ruins. They were built in 1354 and are so gorgeous. It's amazing how people are allowed to just wander and walk all over these ruins when back home everything would be fenced off and you wouldn't be allowed near really. There was this one wall that I transferred out of my chair to get onto to take pictures. The wall I was sitting on overlooked a man-made lake and you could see all of the ruins from where I was. It was right there, on September 18Th around 1 PM, we discovered something absolutely amazing. I sweat. We didn't quite know how to react, three or four little strips of sweat on my lower back. I thought I had sweat the day before, but we didn't know for sure because I took my shirt in with me when I showered and the shower goes EVERYWHERE in the bathroom so my mom, my aunt, and I just thought I got it wet from the shower. At those ruins it was confirmed, it was truly sweat. Since going numb I quit sweating, it's been a little over a year and a half that I last sweat and suddenly sitting on this wall overlooking these beautiful ruins we discover I've sweat. It's a moment I will never forget. The most ironic part of it though is, I absolutely hate sweat, I think it is the MOST disgusting thing ever and to think it's the first change I have is pretty funny to me. That change came on my third shot into treatment. As soon as we got back we ran into the doctor's office and told him and he was SOOOO happy. He looked me straight in the eye and said wow, it really is sweat. Then he went on to say they had NO IDEA what my first symptom to come back would be. He didn't really know what else to say. He truly believes this is the treatment, and you can tell he means it. This is it, from here you can only get better especially with your attitude and your support system he said. From talking to him I knew I was in for the ride of my life while being here, and I will survive and beat whatever has taken over my body. I will become me again, just from that one little thing everything made sense. Each day since then I've sweat a little bit more and in more places. Now a part of my face sweats, my chest sweats, and my back does :)
Thursday, September 24, 2009
Monica was a "normal," active, healthy girl before April 2006. Her only doctor appointments were for her checkups. During the past three and a half years Monica has seen over seventy-five doctors (Western and Alternative medicine) trying to diagnose or improve her condition. Her illness has been progressive and we have had very limited positive results with any treatments we have tried (temporary painful lower back feeling in Germany - doing the Bionic 880). A big part of the difficulty in treating her is that she is numb and does not have a feedback loop to tell us pain or improvements unless they are very obvious like regaining her vision or the ability to walk. We can only judge improvements based on lab results. Monica has received a diagnosis of Lyme with the co-infections of Bartonella, Babesia, Erlichia, Mycoplasma, and Sensory "Neuronopathy." However, no one has ever seen symptoms like hers before - Monica is completely numb from her head to her toes and cannot feel her muscles, bones, or internal organs. She has no sensation in her whole body: pressure, touch, temperature, or proprioception (where you are in space). Monica has to visually look at a body part to make it move. More than one doctor has stated, "No doctor will probably ever see a patient like this in their lifetime." Her condition is considered incurable and probably terminal based on her progression.
Current Discernible Symptoms
In my next blog update I will let you know her amazing improvements already!
Current Discernible Symptoms
- Legs do not bear weight- cannot stand - in a wheelchair as of April
- Numbness - whole body inside and out - she has to see a body part to make it move. Progression started in February 2007 and ended in May 2008
- No taste
- No smell
- Vision is vertical in the left eye and blurry in both
- Loses hearing periodically throughout the day
- Cognitively: poor short term memory, unable to concentrate, difficulty thinking, difficulty reading (vision a factor), sequencing problems, disoriented sometimes, forgetfulness (cannot do school work)
- Does not sweat
- Muscle twitching / body tremors / seizures
- Insomnia - sleeps three or four hours
- Daily reflux - sometimes vomits
- Vocal sounds are weaker
- Goes to the bathroom on a schedule
- Eats and drinks on a schedule
- Feels detached / amputated from her body - her eyes are floating in space
- Pain: chest, ribs, migraines / headaches, right wrist, both knees, abdominal pain / spasms, lower back (all pain disappeared when she went numb)
- Right leg scissor gait
- Both knees hyper-extend
- Right foot drags
- Body temperature not regulating normally
- Balance off
- Hiccups turn into burps for 20 minute increments
- Gallbladder stones /sludge (antibiotic induced) - emergency room
- Constipation pain - emergency room
- Hips: Red stretch marks - currently white from Bartonella
- Leaky gut syndrome
- Nutritional deficiencies
- Toxic load: heavy metals, petrochemicals, food, water and medicine ingested
- What else . . . . . . . ?
In my next blog update I will let you know her amazing improvements already!
Wednesday, September 23, 2009
My first ambulance ride, and it sure was a crazy one. Two days after we got there I needed to do another test called a SPECT scan. We originally were going to take a taxi, but there was an emergency so they needed to push our appointment back until later that night, little did we know that would also mean going in an ambulance. From reading previous blogs and through talking to people we were told to put me in the front with a seat belt instead of on the stretcher. My mom was on the stretcher for the ride over and my Aunt was sitting next to here practically holding the wheelchair while I was in the front. The funniest part was I didn't even have a working seat belt in the front seat so it was kind of useless. In the states if you see an ambulance it's required by law I think to move to the right and let them pass, yeah that law doesn't apply here. We were treated just like a regular car is. About three or four doors up the street from the place I did my scan is just a community garbage dump, and the place we went to was nice. I waited about ten or twenty minutes for them to prepare the dye that was needed for the correct test results. It was a nuclear medicine that crosses the blood brain barrier to figure out how the blood flows through your brain. After the injection I was supposed to wait for about an hour to let the medicine flow through before they could start the test, I fell asleep within ten minutes of being put on the gurney. The test went by pretty fast and wasn't as loud as the MRI's, but I was pretty sleepy during the SPECT so I don't think I noticed as much. Once I was done, we got back into our ambulance and drove home. You could see the reflection in other cars and we could tell the siren light was on, but of course nobody moved or anything. The ride was pretty smooth, but it was such a different feel from ambulance rides (from what I've heard) in the states because nobody moves or anything for you. We got the results on Monday and they came back abnormal which my mom, my aunt, and I all celebrated about. Yeah I know that it's twisted, but we were very excited a test showed something is wrong with me.
Monday, September 21, 2009
Nine hours after landing in New Delhi and I was already on my way to the GMR Institute of Imaging & Research to do eight tests. Home in California it would take a couple weeks AT LEAST to get just one of these tests done, and we were on our way within nine hours of arriving?! How crazy is that? As soon as we walked in the door they started the tests pretty much right away. They put me on a gurney and almost immediately wheeled me into a room to start the MRI's. The first trip to the MRI machine I did an MRI on my brain, my cervical spine, my dorsal spine, and my lumbar spine. The machine was SOOO LOUD, I can't even come up with something to compare the noise too, and I live with a brother who has a garage band who plays metal music. After about five minutes of being in the machine I started coming up with words that seemed to match the sounds it was making (backpack backpack backpack, partay partay partay, blub blub blub, etc.) Once those four MRI's were done I got back on my gurney and all of a sudden I was being wheeled out into the parking lot to a back hall around the side of the building to do a E.K.G. My mom and Hope were in such shock that I was being wheeled out that we just looked at each other and started laughing and waved. They didn't get their cameras out fast enough because they weren't expecting it so Hope got a picture that looks like I'm going into a morgue. My mom and I then went in this little itty bitty room to get the E.K.G. Where I put on a gown and instead of using electrodes they used these "martian looking little suction cups" and clamped my wrists and ankles and completed the test. I was pretty much totally exposed to about five people (four men and one woman) who spoke no English while they did the test. It wasn't a big deal to them like it is to us because it's just their job and they think nothing of it, it's common. After the E.K.G. I was rolled back into the office to go take a chest X-ray which the only difference from back home is I had nothing protecting me from the radiation. When the chest X-ray was done I got back onto my gurney (again) and they had me do ANOTHER MRI on my whole back (cervical, dorsal, and lumbar) which was just as loud and I am very surprised I can even still hear. Getting back onto my gurney (yet again) I was wheeled back through the parking lot again (this time they got pictures) and Hope came with me to do an Echo cardiogram in another back little itty bitty room. The door could barely open all the way to get me inside because I was still on the gurney. Once the Echo cardiogram was finished I was rolled back inside and changed out of my gown in the X-ray room. Two and a half hours later we had completed five MRI's, a chest X-Ray, an Echo cardiogram, and an E.K.G. all of which would've taken probably around two months to get back in the states. The most amazing part of all of it (which really explains why there is so much medical tourism now a days) it cost 14,550 Rupees which is the equivalent to about $300. Each test back in California costs thousands of dollars and to get all eight of these tests done for about $300 dollars is incredible. When my mom got the receipt she turned to Hope and said "Okay, so is there anything you need to get scanned/tested?" Even though we had already done all of these tests back in the states the doctor wanted all updated ones and everything. The tests all came back normal, which wasn't a surprise, and the staff there started asking me questions like "Okay, so why are you here?" That was only one part of our first day in New Delhi, India.
Saturday, September 19, 2009
From the time we left our house around 6:30 PM on Monday September 14, 2009 to the time we arrived at our room in New Delhi, India, we had been traveling for about 27 hours. Not being able to walk makes traveling a little more interesting than usual. Wheelchairs don't really fit in the alleys of an airplane so they have a special chair you have to transfer into for them to wheel you to your seat. During take off and landings my body freaks out and I get EXTREMELY bad tremors and seizures. One lady in a chair behind stuck her head around the corner (I was in an aisle seat) and asked me with attitude "okay, is your chair broken or something?" I couldn't respond, but my mom looked over and told the lady sorry but she's having seizures. The lady then was super apologetic and trying to be nice, so that was kind of aggravating. Everyone around me was constantly starring though. When we landed in Munich, Germany we had a three hour layover and got shuttled around because we are handicapped. We went through our own special customs and security instead of through the lines with the wheelchair. I slept through most of the flight from Munich to New Delhi which was REALLY good. At 7:00 AM our taxi driver was waiting for us, but he didn't have a big enough taxi to fit Hope, my mom, and I plus all of our luggage and the wheelchair so he had to get someone else to take all of our luggage in a different car. The ride to the hospital was for sure an experience I'll never forget. I can't believe how there aren't as many accidents as you would think there would be here, just in that half hour taxi ride I knew there were MANY new experiences to come.
Day 5 in India: It's taken a couple days to get this up and running, but we did actually make it here. I guess we are just on "India time." We are staying in a "nursing home" called Nu Tech Mediworld in the Green Park Extension of South New Delhi, India. There are twenty in-patient rooms here, but so far we have met around ten people from all around the world, and the states. They are from Iceland, New Zealand, Australia, Minneapolis, Seattle, Las Vegas, and of all places, Mountain View. We have been doing A LOT since getting here on Wednesday morning, and I will post separate blogs explaining in more detail what we've been doing each day. Our plan is to be here for at least two months, and we will try are hardest to keep you updated with everything. Thank you for all of your support, and I hope you enjoy reading about our adventure.