Catching Up

I have not been on here in a little over a year, and I'm sorry to my followers for that. The next series of posts will be an attempt to catch everyone up on what I've been dealing with. I haven't had the brain power to post but I'm going to suffer through it for now. Here goes, starting with a quick run over of last summer. Basically, last year at this time, so around March, I started on four antibiotics. I had been on three of which I don't recall which ones (I think Plaquenil, Biaxin, Amoxy) for three months since the beginning of January, but they didn't seem to really do too much more than any other treatment I'd been on. That March was a big month for me. I started on Amoxy, Minocycline, Rifampin, Plaquenil and the usual Cat's Claw, Artemesia, and Andrographis herbs. My pills numbered in the sixties per day, but I just kept chugging. By May, I had never felt so well in my life. I was back to a full swing teenagers lifestyle, the tail bone surgery was healed 100% and the hyper trophic or raised scarring I had was softening up (I still have tail bone pain), even my headache that I'd had for 2 1/2 years with no relief, had subsided. On return to the Lyme Doctor in June we decided I was cured, the 'C' word, and started to take me off med.s two months later. That was sure great, and I felt amazing, even accomplishing a hike to the top of Mt. Lafayette, the second highest mount in NH, in August. As golden as things felt with full time school around the corner, a new boyfriend who took the cake, and health, things started to go back down hill that fall. At first I didn't want to admit it, but I have accepted now, month's later, that I've fully relapsed.

Horsetalk Hippotherapy

I figure since It's such a huge part of my battle with this unforgiving illness, that I should talk about the equine programs I am in. I've always dreamed of horses, since I was a kid. My first word was 'horse', and whenever we'd visit GA to see my grandpa, he always let us ride his horses. He used to work on a large ranch, and he'd bring me in to sit on the hay bales, and watch him work. I was amazed at how he handled the big animals, like they were his best friends. he taught me a lot, about watching carefully, making sure not to walk behind the horse, treating them with patience, etc. But we hadn't gone in the longest time. The year before I got sick, November '06 we finally went down to pay both my grandparents a visit. He doesn't work on the ranch anymore, but inspects houses. Since him and Gaga (she wants to be called that, gaga instead of grandma) split up when my mother was a child, we visit Northern and Southern, GA. for a week each. At Gaga's house I went hunting with papa, and at grandpa's house we went on long trail rides through the fields and down the long dirt roads of Tifton. It was great, to hold all those memories. he was certainly the one to spark my passion for horseback riding.

When I became ill, and was doing physical therapy to keep me moving, my traditional doctor gave us a flier she received from another patient. It talked and explained about a program called hippo therapy, right in NH. I was eager to read on about how it did multiple therapies, all on horseback. my mother contacted the manager (speech pathologist/lesson instructor) Toby. She explained how expensive it was, and how it worked, also how she had never done children with a chronic headache disability. She was used to working with Down Syndrome, and Autism. All the worst developmental disorders out there. People came from MA, and VT. She was well known in New England. It would originally cost 90$ to do 30 minutes of this program every other Saturday, but as the week went on and Toby thought about it, she decided to only charge 25$ for the arena rent fee. What a great person.

From there, my dreams spilled out. The first session determined I was very independent with these large animals, and wouldn't require OT, ST, or PT. Then we decided to move it to every weekend. And I got better and better with the horses, I was now doing more of a lesson, and I was up in the saddle. This was a time where lots of healing and hopefulness fell into place. I started staying all day and helping with the horses and other kids. I was having a great time and learning so much! This program, called Horsetalk, was the best thing that ever happened to me. A Thank-fullness was setting in that I had become ill. I would have never been having so much fun, and learning so much that I had dreamed about in earlier years if I was well. Thank god that he opened my eyes to other programs available for my future career.

I started to become familiar to the patients, like their friend. The parents enjoyed my company too, since March '08 when I met them. I started getting lessons which led to strong friendships with Toby and other employees. Over the summer, I got worse and worse, but I stayed active with the hippo and would sleep over Friday nights at my instructor's house so I could help Fridays and Saturdays. Then as school started back and I determined I had Lyme, everything spiraled. I had a very busy life. We started finishing off the basement for my 3 brothers, and we had a big storage truck to empty and remove from our yard. I was feeling worse, and started homeschooling which was a large change. I also started visiting a mini horse farm every Sunday afternoon to play and help train the babies. This barn was closer to us than Bow(now Deerfield as the barn for riding changed), so I spent some time there and became very close to a cute little baby named miracle.

I started missing a lot of lessons within the past months, and the ones I have gone to I have not been able to stay long, since I am more tired and hurting worse. I still go though, and love spreading the word about how nice this program is. I have seen kids go from mute to talkative, from unstable to balanced, from distracted to listening well. I am now a close volunteer to the program. I try to help when I can, and this has given me a sense of strength, something to get better for, a light at the end of the tunnel.

If you want to check out the site, go to www.nhhorsetalk.com
You'll see Toby's page and it explains the difference of Therapeutic riding, and hippo therapy. Hippo is run by medical professionals and run for specific goals and qualities to be met, and Therapeutic Riding is leisure based, with less benefits from the therapy sessions.

Anyway, that's what keeps me going. I love fulfilling my dream, being with horses.

Recovering from Surgery

Hey everyone!
I got my stitches out Tuesday, exactly 4 days ago. I was told I was a tough cookie, had high pain tolerance, and healed nice and fast! I'm still healing of course, but the stitches being out is better. The only thing is she warned me that usually she only takes a few out, and I need to be careful not to over-do it the next week so that I don't rip it back open :-0 so I'm sincerely taking it easy.its hard though when I've spent so much time inside! Wednesday I was not going to go to youth group, but the thing was, it was my 15th day not getting out (other than the doc.s) and I needed to relieve some of my cabin fever...... I miss the horses and riding, and skiing, and being outside in the fresh air and sun! I went to youth group and had a warm welcome! It was awesome! Thursday I was going to go to Concord, NH because a bill was being proposed to protect NH MD's from treating Lyme Disease. I wanted to go so bad but snow kept my ride home and therefore I was stranded with no ride and watching it on the news, seeing all the familiar faces of my NH lyme buddies on New England News! I was sure upset.... But god kept me home for a reason, because I'm glad i didn't over-do it! Friday I stayed home, and hung out. i watched Castaway, what a sad but interesting movie. I made up my own ending to it, so the real ending didn't appear as sad and depressing, but I won't spoil it for anyone... hehe.... Now today is Saturday and I'm missing my mini horse Miracle and wanting to see her so bad, so I'm going to try to convince my mom to take me down to see her for a little while. I'll have to take it very easy though.... But oh, it will feel so wonderful to get out and underneath the blue sky, and feel the cool weather touch me cheeks! Just breathing in the sunshine and fresh air will be a relief! Not including the smell of the barn, and touc of the horses! It's true, horses have healing elements! :-D

New Med.s

Hey everybody, stopping in to give a new update! Started the beginning of this year with a new protocol for my Lyme treatment, and I actually for the first time in 2 1/2 years either feel some side effects or herxing from these three new Antibiotics. I am on Plaquenil, Biaxin, and Amoxycillin. I have been on Biaxin and Amoxy in the past by themselves, and then was on Bactrim and Biaxin together for a little while, but Plaquenil is new, and together with the other two! I've been dealing with lots of nausea, stomach pain, sleepless nights, headaches, neck tension, some tingling and numbness in my fingers and feet, and some surface tingling on my stomach. I've also been edgy and have no concentration at all! This is all new stuff, one night I was up vomiting all night, another night I was up nauseas all night, and many nights I've gone to bed nauseas, or woke in the middle of the night nauseas for a bit. I have experienced some vertigo and dizziness. I'm still taking Carafate for the Gastric ulcer, going to see my GI MD next week.... She is not going to be happy now that i'm on THREE abx.... oh well, got to do what you have to do in order to treat this crumby Lyme Disease.

Pilonidal Cyst

Hey everyone, again...... Well Wednesday the 13th I went in for surgery. For months I have had issues with a Pilonidal Cyst. Basically, the Pilonidal glands are right above and along the tailbone. Some people have issues with these glands as they get older and grow, and the glands may become blocked and create a cyst. The cyst and glands are very painful if this happens, so with my horseback riding and different activities the only result was to remove the problem so that it won't reoccur later on. They went in, with about a 3 inch incision, and scraped out the cyst and glands. This has left me with a very painful cut, with 8 stitches, to tend to as it heals over the course of a month. Its the 6th day after the surgery right now. The 1st day afterward I got really sick from the pain med.s! The 2nd day was a little better but sore, I was finally allowed to shower and run some hot water over it. The 3rd day was yet again a little better and I was on my side the entire day. The 4th day was yet again a little better, but that night I was up throwing up pain medications. The 5th day I was tired but able to sit upright on a soft pillow, and today I am much better. I've been up walking around and sitting on a pillow all day, so its been a good and fast recovery so far! The stitches look good and are only sore. I will be able to move some more in a week or two. The surgery went well, and they did not find any infection or anything. I am on 3 antibiotics for the Lyme Disease, so the possibility of getting an infection there now is extremely slim, I should heal nice and steady!

Hiccups

One thing I've noticed over the course of my Lyme Disease sufferings, is that I will suddenly get an urgent and curious case of the hiccups every now and then. I'll go for a week or less where I get hiccups MANY times a day that will last what feels like forever, and range in severity (these weeks come often spread very far apart, up to 5 weeks apart from each other). They are very annoying and pesky, and everyone has different ways to relieve such spasms. I call it a spasm (because I know there are wide varieties of spasms caused by Lyme Disease), but really as much as I'd like to think that it's a spasm of the diaphragm (or the muscle right beneath the lungs that flexes to cause breathing) it is a much more uncontrollable and widespread motion. I was very curious about this subject, so I did some research which led me to a very interesting and informational article: http://www.scientificamerican.com/article.cfm?id=what-causes-hiccups
This article speaks of what causes hiccups, what is a hiccup, and gives a very detailed and helpful idea on the layout of the hiccup. Hope it helps you some!

Another Bump In The Road

When I was diagnosed with Lyme Disease I was having a discomfort on the left side of my stomach, right under my ribs. We put it off for so long, and there would be times it would get really bad too! Finally within the last few months we started looking into the gallbladder, which can cause pain and discomfort, and worsens after eating. The gall bladder creates another one of those chemicals to help digest food I guess, and the bile it creates is important, the only issue is it can have different issues like gall stones, and pain, and need to be removed. Not everyone needs their gall bladder removed, but we started considering IV Rocephin as my next treatment regimen and we wanted to make sure that we checked the gall bladder in full for any signs of problems before continuing down that path. We first did an ultrasound that checked the structure of all the organs and major things in the gut, including the Aorta Artery from the Heart, the whole digestive track, the Spleen, Kidneys, Ovaries, Gall Bladder, Pancreas, Liver, and so on. It came back clear, and we decided to do the next step which would check the function, instead of just the structure, of the Gall Bladder. This also after 5 weeks came back normal, and nothing was found. Then within two weeks I started going downhill. I had not even the slightest desire left in me to eat, I had no appetite, i was forcing a few bites a day if any food, and wasting lots of food, I just couldn't manage to eat even a bowl of soup! It would hurt if I did force down a lot, and I was extremely tired, and weak, and could not even horseback ride which is my passion! After 2 weeks and about 20 lb.s were lost, we started thinking Pancreatitis. The Pancreas creates enzymes to digest food and if its having problems can instead digest itself causing pain, lack of appetite, and fatigue, along with Diarrhea and dehydration. This could be serious, and the average treatment for something like that was multiple days in the hospital with IV nutrition to let your Pancreas rest. Then a few days after seeing the Doctor, and while we were waiting for the blood test for Pancreatitis to come back, i started having bad stomach pain, noticeably worsened when i ate, to the point where I would hunch over forward to help relieve it. I was nauseous, and not hungry, and tired, and in pain. I fought through but by Thursday evening was so bad I could barely breath, so I went to the ER. They did blood tests, urine tests, and a CAT scan (where you drink the contrast for 2 hours, and then get an IV and take the photos over the last hour), they even put in IV hydration for me and administered Morphine and nausea medicine. All the tests were negative for anything, and we had no clue what to do... I went home and rested, and then Friday my mom got in contact with the GI specialist to get her opinion. The GI doctor wanted me to start a medicine called Karafait that night, and take it 4 times a day over the weekend, and see if it helped any. other than that I was suppose to rest. Well i had a fever Friday evening, but still took the Karafait, and suffered through the night. Then by morning I felt a little better, still tired. By Sunday I was feeling wonderful! No pain, Nausea, nothing! it was virtually all gone! I was hungry, and thirsty and could eat without it bothering me! Like a miracle it was all better! the GI doctor explained Monday that the Karafait was probably coating a Gastric Ulcer and that's why it didn't hurt anymore. it would coat it and give me time to heal. This must be whats wrong. I have taken loads of tests we are still waiting back for, and I know I am going to be healing until the end of January at least, but I'm so glad we found what it was after two whole weeks of pain! This has been just another bump in the road in my treatment, and I will take it with ease and as Dory from Finding Nemo warns : 'Just keep swimming!'