Wednesday, July 25, 2012
This has been a question I've asked myself for so long, the infamous school challenge. For teenagers with chronic illnesses, school is a daunting chore we must all face at some point. However, it doesn't have to be the end of the world. It has taken me a long time to come to grips with this. My entire childhood encompassed the school career. I struggled to receive straight A's, be number one, form lasting bonds with teachers and student aids, keep involved in sports and after school activities like student council, still find time to read and have friendships, and so much more. The ideal picture was the possibility of graduating early, or with more than enough credits, and progressing to a large career field where I could be top of my class and shine like the star I am down inside. When I got sick in seventh grade it killed me to miss school, to miss my first year being secretary of Student Council, miss the application process of National Junior Honor Society, miss the soccer games, and band practices, and lose so many 'friendships'. My heart broke everyday, and it still breaks as I face the challenge of jumping back into school. I have been unable to process, react, concentrate, and remember like the student I once was for an entire 15 months. My brain just doesn't cooperate with me anymore, however I have to keep one foot in the door and attempt my dream to a high school diploma. I never expected that one day my biggest dreams of 8 years of college would be obliterated and all I would pray for was to graduate. Just to make it through. Call me preppy, but taking an extra year to finish school, being left behind by the class I have grown with since kindergarten, and struggling to just keep a B is very painful. There are options out there however. I am receiving help from Partners in Health to refine a legal 504 encompassing my entire health condition, request IEP special education testing, meet with the school and demand a tutor to help me review and finish one class at a time, and re enlisting to my classes through an online charter school called Virtual Learning Academy (VLACS). If I don't have to be in those halls, judged by those teenagers and confused teachers, than I would prefer not to be. I have done well with a few VLACS courses in the past, and I am pushing to receive a tutor and get through my junior year. There is also the option of completing credits at a local high school that offers a night school program and runs it very much like a college class for adults pursuing high school diplomas or students wishing to graduate early. This is an option, but not a great one as they will not accommodate my medical needs fully. At this point I am thinking I need to finish my biology from Sophomore year by this fall, with a tutor's help. Then I will proceed with receiving help to pick up another 2 or 3 classes online, working out of the house still and trying my best to complete them thoroughly and quickly. If I can manage this, holding myself to a daily schedule, then I will consider either returning to school in the spring part time or picking up a few of those night classes along with the VLACS. Its a step by step process to feel out my success in the near future with this new neurological setback from the combined Chronic Lyme, and post concussion symptoms.
A few weeks ago my doctor's appointment was enlightening. We were happy with my progress, discussing removing the PICC line soon, and working on getting me back into school. We switched the Zithromax to Minocin and Plaquenil to better combat my neurological symptoms, and I regret it. I now have suffered such bad symptoms, that I couldn't tell what was causing the problems. I had my first cycle since being off hormone medications, which sparks the Lyme up and messes up my body; the medicine change would could be either side effects, herx reaction, or just me backsliding; an increased stress level on the home front and personal side of things; and then the added challenge of trying to get me back into school work and bible studies all over again. Now, I spend all day every day feeling like the room is collapsing in on me with this weird dizzy vertigo type feeling. My eyes are acting up and so light sensitive again it is actually quite sad. My sound sensitivity has gone back up to the point where phone conversations are a challenge. Within the past week I had a migraine almost every day, managed with lots of mid day naps, a dark room, Tylenol, caffeine, loads of water, and ear plugs. After a nap and some medications it would usually reduce to a manageable point where I could sit up, talk, or eat lightly, but was still nauseas, taking a combination of nausea medicines, and still too dizzy to make it farther than the bathroom. Yesterday I did not have a migraine, I had other problems and stresses to manage. I have not had one yet but I'm trying to update all my fellow Lyme sufferers before it hits and I'm out cold for the rest of the day and night. I stopped the Minocycline, which was the second one I had started right before the migraines hit, and I'm waiting to see if my brain clears up a bit in the next few days. I have stayed on the Plaquenil the entire time so I can better see what is causing my symptoms to be worse. Small steps of change. I plan to be back on my gluten free casein free caffeine free diet as soon as this calms down and my progress changes direction again.
Friday, July 6, 2012
On Christmas Eve my parents received a call at one in the morning. Apparently, when my dad was younger and in the air force, stationed in Georgia, right before he met my mother he was engaged to a woman named Sandy. They were living together and his parents came down all the way from New Hampshire to meet the fiance, when she mysteriously broke it off. Within a few months, Sandy discovered she was pregnant and for reasons unknown she decided not to tell anyone including Jake, the little boy she gave birth to 21 years ago. For the first time, Jake has connected with my father and told him he had another son, and was married to a woman named Shari and had a baby who was 2 years old named Chance. The following week they received the paternity test results, 99.9% positive. Jake, Shari, and Chance came to visit us from the 27th until today, the 6th. It has been a long six months preparing for this week where I met my oldest brother for the first time, my first sister in law, and my nephew! What a Christmas present to receive! My brother Jake got to say happy fathers day for the first time to my dad last month, and we has a great week getting to know them. We went to the beach and had family gatherings for July 4th and ate seafood. Sorry for not posting sooner on this event, but it's kept me busy and I have not had much time the past two weeks to post. I am so glad I was feeling better to enjoy their company this week. They are on their way back to Iowa right now, where they have a house and the rest of their family. It will be a long drive but we hope to see them again soon. My life seems to be like a Jerry Springer episode, always something shocking and dramatic to keep us busy!
My lyme doctor has yet again switched up my protocol a bit. This time it's purpose is to get me back on some medicine that will combat the Bartonella in all it's forms. Minocin is a doxycycline type medicine that is used to treat lyme and is one of the first medications used in most peoples treatment. I have never been on doxy, but this is my 3rd time on Minocycline known as minocin. We just started the Minocin and Plaquenil two days ago and I have been on the Omnicef and IV Clindamycin for atleast a few months. This is my thirteenth month on IV Medication, technically twelfth month since I took April off. Only two have been on Clindamycin and they have been the best two months yet. I am on my third month now and feeling pretty good. Coming off of the Yaz/Gianvi has straightened out a lot of depression symptoms, and coming off of Elavil/Amitriptyline helped my heart rate and dizzy spells. I am on an adrenal support supplement, powder magnesium, Co-Q 10 and sub-lingual b-12 to help with energy and detoxing. The grand scheme of things is hard on my stomach, but you can get a lot of this stuff that is drinkable and dissolves in your mouth to lighten the load on the gut, and increase the efficiency of the supplements. I am more energetic, cleaning around the house and getting out more. If my memory was not still blocked I would even be clear enough to start catching up on schoolwork and finishing my Biology and Spanish from Sophomore year. I am going to start a Physical Education class online to start doing something to get me back on track, and now that my visiting family has left and things have calmed down (see 'Half Brother for Christmas'), I can concentrate more on getting myself back into life. I still need to rest and take it easy, but I have even gone as far as starting to run every other day!