step by step

The last few weeks at rehab have been to busy for me to blog as much as I'd like to, now that I have a few moments I will update you all to my progress. Since starting rehabilitation my progress is phenomenal. Now by that I mean I'm able to do small things that I was not able to before. My largest accomplishment is my ability to take a few small steps with the help of a brace,walker,and therapist. I couldn't believe it. They are teaching me to use my ab muscles to advance my paralyzed leg. It is so cool. I haven't been so happy in a long time. I know small steps will one day lead to big steps. There's no such thing as only small steps in the world of rehabilitation.

standing up

Today I stood up using the parallel bars for the first time. The therapist moved my legs to help me take some steps while I grabbed onto the bars to hold my balance. Kessler is doing a lot of good for me. I am really excited to continue making progress in therapy. I'm glad to be at rehab.

Kessler day 4

I really like it here.it's a wonderful facility,I feel like I can get a lot accomplished. Today in physical therapy I tried the standing frame. It was so cool to be standing,even if it was only for a short time. I couldn't stand so long because it made me lightheaded. We also worked on balance exercises and neck strengthening. They work me really hard every day. I like it. I hope hard work produces results. Day by day.step by step. It'll happen.

Kessler day 1

I started my therapy sessions today at Kessler. We worked on stretching, trunk strengthening, and other leg exercises. It was hard work but I'm happy to work hard to get my desired results. After my therapy sessions I played scrabble with a recreational therapist and another patient who is my age. It was a tiring but productive day.

good news

finally after weeks of waiting i found out i got accepted into kesslers rehab program. I am extremely excited because i will finally get a shot at the therapy i need. Im getting admitted on sunday. I cant wait to begin therapy. One of my major goals for when i get out is to be able to walk. It would be amazing if that would happen. Im ready to work hard.

Post op

Yesterday i had my post op appointment with the surgeon who removed my gallbladder. Good news. Im healing up nicely. After that i had an appointment with a doctor at kessler rehab hospital for an evaluation. Everything seemed to go well. She said we will know something on tuesday. Fingers crossed.

Surgery update

Its kind of depressing for me lately. I see all my friends are going off to college and I have to stay behind. I know its the logical choice its just a bummer because id rather be off to college with my friends. The healing from my surgery is really slow. Its still really sore. Im glad to have it out already because i dont need to take the galbladder pill anymore. That pill tasted so nasty. Glad to be rid of it.

gallbladder out

yesterday i finally got my operation to remove my gallbladder.Everything went well. Im very sore right now and need a lot of rest but i think ill be ok soon.

decisions

Througout my illness i have been faced with many choices. It still doesnt make deciding on a major decision any easier. Ive been given the option to either go to school this up coming semester or take the semester off to go to rehab. Although i really really really want to go to school based on how things are playing out in my life right now, ive decided to take the semester off. I am still waiting to hear if the rehab facility will accept my case..fingers crossed. Only time will tell if i made te right decision. It would be nice to be able to get on my feet thoug. That would make missing the semester worth it.

8/8/12

Yesterday I went to visit doctor katz to get an ivig treatment despite the reaction I had. We changed the brand and pumped me up with pleanty of antihistimine and steroid. Everything went ok, my throat only seized up twice. For now I no longer have the luxery of being able to get home infusions due to the high risk of anaphylaxis. I desparately need treatment so Im willing to drive up to connecticut weekly if i have to. i  would do anything to get well.

update 8/5/12

This week has been pretty eventful. I met with the surgeon and got a date for my surgery. I really cant wait until the operation because the symptoms suck right now.I am also stuck on a diet limiting what i can and cant eat even more. On wednesday I will go up to connecticut to see Dr.Katz. I am looking forward to my appointment with him. On monday i will go to the hospital to have some presurgery testing done as well as an anesthesia consultation. Hopefully, everything goes well. On friday i met with a new doctor. Doctor Bransfield. He is another doctor with a large amount of experience with lyme disease. He put me on a few new meds. Hopefully they will help.I liked him he was very nice.

Money sucks

Im really pissed off because college is so expensive. Im sure many other college students are going through this same frustration. But, its not fair. Its bad enough that I have to work harder than the average student to stay in college but now that i managed to get the grades money once again stands in the way. I am worried that all my hard work is now in jeopardy because school is so expensive. This is really upsetting to me because school is the one ounce of normalcey i get. I really hope that everything works in my favor for once.

ER last night

Last night I had to be taken to the Emergency Room. I called my new PCP and she told me to go to the ER after telling her how Ive had fever and abdominal pain for the past three days or so. So, I went to the ER and sure enough my gallbladder was the culprit. I was not at all surprised since the sludge has caused me problems before. I hope the problem can be solved so I can have one less issue to deal with.

I cant take this anymore.

Im tired of my illness ruling my life. Its like I have no say. My mom is all like why dont you take a year off from school.. I tell her the same thing every single time. School is my only sense of accomplishment/productivity I get. Right now lyme disease has presented nothing but let downs. I still cant walk, this treatment doesnt work, ect... With school I feel productive, like im achieving something. I have my heart set on studying abroad spring semester. I brought it up to my mom today and she said you can only go if I can walk. like i have the ability to choose. I am so frustrated and angry because once again my illness decides what in my life I get to do. Studying in Sweden is something I knew I wanted to do since before even going to college. Spring semester is my chance to go.. my illness is once again the only thing standing in my way. Im sooo fed up. I want to be able to have a say in what I want to do. Ive missed out on too much of my life because of stupid Lyme disease. I really dont want to miss out on this too. Id do anything so I can get well enough to go. Please fate work in my favor. I beg you.

its so hard to say goodbye

My boyfriend left back for canada yesterday. I had so much fun while he was here. I love his company and dread the day when he has to leave. I love how he accepts me for who I am instead of  only seeing my disability.  The visit started out grim because the first week he came in town I was still in rehab. He is so devoted that he visited me everyday from start of visiting hours until late into the night. The second half more than made up for it. We even got to take a two day trip to Niagra Falls. He promised he'd take me out of the country since I often complain to him about my lack of traveling. (he is really well traveled and i wish i was ^^ ) At the stage I am at right now traveling is like playing Russian roulette. You hope for the good days but count on bad ones coming up. Lucky for this two day trip it was only good days. I guess the forces that be decided that i deserved those two days being good ones because they messed with my plans by causing me to be hospitalized while my boyfriend was in town.
I am extremely thankful for everything he does for me. I know it must take a lot of patience to be with an ill partner. Especially on the bad days. I dont know how he does it but he does a great job.
Saying Goodbye to him yesterday was just as hard as it was last time. I wonder if it ever gets any easier. Probably not. I hope I get to see him again soon.If Im lucky I might get to see him on my birthday. That would be the best birthday present I can get.

Home from rehab

I got released from rehab today. I have mixed feelings about it. On one hand I am really happy to be home and on the other hand I feel like I could use more rehab. I was hoping to be standing by the time I got out but unfortunately, it didnt happen. My goal is to be walking (on crutches or cane at the least) by Christmas. I really hope I can achieve this goal.It does feel good to be home though. I missed my dogs especially. I went and surprise visited my grandparents. I wanted to introduce them to my boyfriend. Things went well and I had a really nice time with them as always.

Fourth of july

I spent the holiday with my boyfriend. Despite being in rehab still, we managed to enjoy our time together. We even managed to go out on a day pass to dinner and frozen yoghurt. It was so nice being able to see him. My boyfriend is from canada so the time we actually get to be together is extra special. I hope those who celebrate hope u had a happy 4th of july! :-)

Good day

I had a good day today. It started off with productive therapy sessions. In physical therapy we did e stim, in occupational therapy we did coloring exercises, and in speech i was given a banana to practice chewing and swallowing. The therapy dog was brought in today. I was so happy to pet him. This evening i went out on a day pass to get my boufriend from the airport. I surprised him because he didnt think i was able to leave the hospital. I was so happy to see him. It made my week. I cant wait to see him again tomorrow. For now im going to get some sleep. Good night.

Saturday

I had a very productive day today. In physical therapy i did some weight bearing excercises. It was extremely difficult but i know its necessary. I felt good afterwards because i feel like im working hard. The physical therapist i saw today said i have a lot of potential but need a lot of therapy. Im up to the challenge. As much as it stinks to be in a hospital over break, i dont mind too much. I know that being here is what i really need.
       my grandparents surprise visited me today. It was definately a highlight since i often get lonley. My grandy made me laugh when she pointed out that we are the opposite of the rest of the visitors. The visitors were grandchildren visiting their grandparent while in my case it was the grandparents visiting the grandkid. Its pretty funny. Tomorrow is the day where there is no therapy...i have no idea what im gonna do all day. Thank god there is cable here :P. 

Busy day at rehab

I had a very eventful day at rehab today. I started treatment in physical and occupational therapy and had a speech therapy eval. I worked really hard today.im so sore. The best part of today was this evening. My twin sister came to visit me and she surprised me by signing me out for an hour and takin me for icecream. I have the best sister ever. Im so tired now though. See you later!

Rehab finally

I finally got out of jersey shore today. Now im rehabin it up at meridian rehabilitation. I didnt start any therapy today since it was the first day. I look forward to doing the therapy because i need it very much. It is going to be a lot of work, but its worth the benefit in the end. Anything in life worth getting takes hard work :-) . The harder the work the more rewarding the end result.

Waitin on rehab...

I am still in the hospital for starters...the docs say i should be sent to rehabilitation. I am really looking forward to going despite the fact id rather be home.im looking forward to going because i can get some intensive therapy and hopefully get my leg braced.my physical therapist says that the brace will help me immensley.i feel kinda homesick though. The hospital is extremely lonley. I wish i was at the shore instead of jersey shore hospital. However, i know that right now the hospital is where i should be. I find out tomorrow or monday which rehab ill be admitted to..either kessler or meridian. Ill keep you updated when i know more.

june 19th

I feel like writing an update yet im not really sure what to say. lets see where this goes...For a start, i am still in the hospital. still having trouble swallowing. it is so boring here. the room here reminds me of something out of a movie, its so dreary. I guess ive been too accustomed to the childrens hospitals. i have no idea when ill be out of here but i hope its soon. i want to enjoy some of my summer. 
my grandparents have been keeping me company while im here. they are the best and i am so greatful to have them. they live over an hour from the hospital and still come to visit everyday while my mom is at work. after work my mom comes to the hospital to visit. im so lucky to have such a loving family.
i know i dont mention it as much as i should but i am so greatful for my sisters. they give up so much so i can get the support i need. the main thing they give up is normalcy. they sacrifice so much and hardly complain.i couldnt have better sisters. i cant wait until i can come home and spend some time with them.

frustrated

its day 13 of no swallowing and i can not begin to voice the amount of frustration i feel. 13 days of no swallowing means 13 days of no eating. the doctors say encouraging me to eat could be helpful. thats all fine  and dandy but i think my starving stomach has the encouragement under control. i am genuinly worried about loosing too much weight. i reallly  hope they find some way to get food into me.

NG tube

im finally getting the nutrition i need. yesterday the doctors put in an NG tube. getting the   tube in was so painful. having it in is just slightly more comfortable. i hope they can get me to swallow again.

hospital again

I am once again admitted to the hospital. it is because of the swallowing problem. i feel really frustrated because im so hungry and cant swallow. i really hope they can help me. my  family and friends are the most amazing people ever. they are helping me keep my spirits up.its so nice to have a good support network.

Still not swallowing

Four days after my reaction and I still cant swallow. It  is so obnoxious because im friggin starving. I havent eaten much more than a little bit of baby food and soggy mashed potatoes. Im obviously dehydrated because Im ¨pale and dry¨ according to the pediatrician I saw. She recommends I go back to the hospital so I can be treated there. I am unsure whether I want to go or not. Everytime I go to the hospital its so aggravating.
 Despite this I attended a physical therapy session today. It was a good session, I worked hard leaving my muscles sore. We did e stim (electrical stimulation) today on my right leg to see if we could get the muscle to react a bit. It will take a while before we know if anything improves from the e stim.

Long day

Yesterday started like every other friday. Fridays are when I get my IVIG treatment. I was upset about it because treatments take a huge toll on my body but I wasnt worried. The treatment began as usual. Start with a dose of anti nausea medication, then a shot of steroid and then the IVIG starts to be infused. This is when things were not so normal. My nurse asked me if I was feeling ok. I looked at him and told him I felt kinda funny in my throat and my face. He told me to tell him if I feel anything else unusual. The treatment continued on and moments later my face swelled up and my throat was more swollen. The treatment was stopped and I was administered IV benadryl. Next thing I knew I could barely breathe at all. I was really scared. The nurse then gave me an epi shot and 911 was called. My body was beginning to turn blue. When the Emergency squad arrived they put on an oxygen face mask and I was off to the hospital.
I was in the hospital about 10 hours. While at the hospital I kept getting shots of benadryl and a steroid drip trying to keep my airway open. The doctors diagnosed it as Anaphylaxis.

Physical Therapy ...first day back

Today I went back to physical therapy for the first time since I ended school. We did an evaluation today to assess what kind of shape my muscles are in. The good news is, my left leg gained some strength. The bad news is my right leg is worse.The contraction that was there, is now barely there. There is no voluntary movement of it, only palpable contractions and spazms. My therapist says its too early to give a prognosis so Id have to wait to see if I have a chance at regaining movement completely.

5/30/12

Today has been a pretty rough day for me.  The hot humid rainy weather makes it awful on my joints. Last night was a patch change night. The pain was horrible. It felt as if my limbs were being torn off my body. Distractions are always good. It helps to help you not think about the pain. Although the pain is physically killing you, if you dont put all your attention on it, it makes it easier to cope. Thats how I get through the really hard days. I am getting really tired of my illness already. Especially the pain. I want to be able to enjoy being a young adult. I cant believe that five years of my life are just gone. That is time that I can never get back. Time I have spent being tortured like I never thought was possible. I can not wait until I am better and can regain my freedom.Until then, I will keep on fighting.

Skepticism

Living with lyme is so hard. Besides the physical hardships of the illness, many of us lyme patients have to deal with skeptics. Not just skeptics of you but skeptics of the illness itself existing. How are you supposed to get help if when you go to the hospital, the doctors there dont believe your illness even exists. Its the worst position to be in ever. Instead of getting help like any other patient would, we are stuck trying to convince medical professionals that we need help. It is extremely frustrating. I think it is time that the infectious disease society come up with better guidelines on lyme disease. So physicians can actually have a way of helping lyme patients. News flash, the three weeks of doxy is not sufficient. Maybe if Lyme was caught really early, but since the testing for the disease is not reliable, many  cases are caught too late. Its about time for a change.

May

I am finally done with school.  It gives me mixed feelings. I like being home but, its hard because the distraction school gave me is gone. I have visited the ER only once this month. It was a pain issue as usual. I plan on spending the majority of this summer working on my health. I really hope I can find something to help ease the pain. I also hope to become more mobile. I have a goal to study in Sweden Spring semester and I want to be mobile by then so I can go.

Missing in action

Hello everyone,
I am so sorry to be gone for such a long time. Had so much on my plate lately due to school and treatments.Ill update you all so you are up to speed on whats going on. I have started my IVIG about a month ago. At first I was thrilled because I was told that treatment would help a lot. But like the many other treatments Ive been through that didnt last. The first treatment went fine just had some exhaustion and nausea. No big deal, nothing i couldnt handle. The second treatment was not so smooth. I got my treatment as usual along with the exhaustion and nausea. The next day i woke up feeling a horrible stabbing pain in my eyes. I literally felt like i had someone stabbing me in my eyeballs with a fork. Tons of fun. So I thought ehh this sucks but i can handle it. This treatment is really important. So i sucked it up for another treatment. That treatment went as usual the exhaustion nausea and stabbing pain.However, that didnt last long because when i awoke the next day, I just kept vomiting and vomiting and having killer diarrhea. Absolutely miserable. Worried we phoned the doctor and made an appointment. The doctor took me off the treatments temporarily. When I had my appointment about a week or so ago the doctor perscribed me some steroids to combat the side effects. I havent continued the IVIG yet but I will soon and will let you know if the side effects subside. I hope so. Other than that much has not been happening.My health condition is pretty much the same and Im just getting through school as usual. Ill try to be better at writing since school is now winding down. Happy Spring!

Finally IVIG

I am really excited today. My appointment to start IVIG is set up and its next week. I have been waiting for this treatment for months. My doctors say that this treatment is promising and I really hope it will help me. I will keep you updated.

Home from the hospital

On sunday afternoon I was taken to the hospital from my school by ambulance. It isnt as bad as it sounds, I was just really lethargic and had a major shaking episode which concerned my roommates.(so glad i have roomies who are concerned about me). Anyway.. I was taken to YNH childrens hospital and was admitted. I had a four day hospital stay. I was asleep most of the time. The doctors concluded that I caught something which my immune system (or lack there of) couldnt fight off by itself and they administered additional antibiotics. I was discharged on Tuesday and now am home in New Jersey resting. My doctors advised me to rest and drink gatorade while i recover. I plan to return back to school on Monday.

Thank God its Thursday!

When seeing this title the first thing going through your mind is why the hell doesnt it read thank god its friday. Well curious readers, Thursday is like my friday. I dont have class on Friday so I technically have a three day weekend. Its awesome. Today I went to the doctor. Nothing of major importance happend there. When I got back to school I started on my homework and then went to the cafe for a family dinner with my roomies. It was nice. I have great roommates because they are so helpful to me. Since my campus is not exactly wheelchair friendly as I probably mentioned in several other posts, I need to take the longest possible route to get to the dining hall. Instead of taking the short route, my roomies took the long route with me. I really appreciate it because it is not too fun being outside in the cold connecticut weather longer than you have to. I am so glad that its the weekend. I have a lot of makeup work to do as well as homework. I also hope I can have sometime to just unwind. The week can get so stressful.

Update

I have returned to school after my winter break. My spirits are quite down at the moment but Ill try my hardest not to keep them that way. Overall I am just so sick of being sick. I want to be able to just live my life pain free. No more meds, no more medical equiptment. I dont know how much more of this I can go through. Its really frustrating. I really hope that there is something out there that will help. There has to be because the one thing I know for sure is I will not spend the rest of my life like this. There are too many things I need to do with my life. I just really want to get better.

Pain sucks

Last night was not fun at all. It was a perfect storm for misery. No pun intended. My pain meds were low, I worked hard in physical therapy, and it was raining out. For those lymies reading this, you could easily imagine the agony this situation caused me. It was awful. Although this pain I was feeling sucked a lot,it came now where near the pain I feel 24/7 in my head. But, the suckiest part is, I had this going on at the same time as my headache from hell. Lucky for me, I have an extremely dedicated mom for a caregiver. She held me through the pain until the early am hours. Eventually, I fell asleep from exhaustion. It was definitely not a fun night.

Todays Post January 09 2012

This week has been a tough one for me because I have been feeling a bit under the weather. Today I summoned up the strength to go to physical therapy. Dispite not feeling so great I think it went quite well. What sucks though is now I am feeling under the weather and sore.Meh. I know it is worth it because it brings me closer to my goal of getting better. I dont  know what it is but lately I have been feeling more cranky than usual. I believe I am just fed up with everything. I am tired of being in pain, tired of having to put a shit load of effort into the simplest of tasks. Its mentally and physically exhausting! All I want is to get better already. I miss my old life where I was able to stand up and go where I pleased. Not like now where I need to take 10 years to stand up and even longer to get where I am going. Im nineTEEN not nineTY. The problems I am dealing with now seem more fit for someone decades older.

Therapy

Happy New Years Everyone! I hope its a happy and healthy one. The first real thing I did this 2012 is begin physical therapy. I am glad because one of my new years resolutions is to get better and part of getting better is walking again. I will admit the actual therapy part is not fun at all because it causes be a lot of discomfort. Especially when the therapist pushes your boundaries which just so happens to be 90 percent of the time. I guess the saying no pain no gain applies here. Lucky for me I have a great physical therapist who I work well with. Although its unlikely, I hope I can get my motor wheelchair before going back to college on the 18th. Its starting to get really cold out and that makes it suck 100 times more to get around. Ugh but theres not much I can do about it.