Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club College and AS...

I'm doing school full time, but it's 100% to keep my health insurance. I must admit I'm not doing as well as I should, but as long as I'm enrolled in the classes- I keep my insurance. Being on $20k+ medications, that's pretty vital. After my 22nd birthday in April, my student status won't matter. I've been at a community college for four years, changed my major three times. I can't put my heart and my effort into it, and haven't been the best student, because frankly- I don't want to do what I have spent the past 4 years working toward. I'd love to open a bakery with my sister, but that idea is a bit scary. Maybe years down the road if we were successful, we could hire people and not work all the time...but when we get started, it's a lot of stress on my already suffering body.

I'm in one class that meets 2 nights a week, one night is 3 1/2 hours and it's torture. In casual conversation, I brought up my condition to my professor. I didn't mention it in the beginning of the semester because my pain was pretty well managed, but now, I need to get up and stretch a bit. So I told him, and he was very understanding. I work five days a week, eight hours a day as a nanny, and on school days I head straight to class after work. Having an 11 hour day plus all the driving is starting to really weigh down on me, I just can't wait until it's over.

After that, I have to figure out my path. The idea of not going to school is scary, just because that means I really have to start thinking and making decisions about my future. But I'm happier to do that than to suffer through school anymore. Some people are cut out for school, I am not one of them.

Sorry, this wasn't really advice. But just know I'm with you, in the same stinkin' boat.

I've found that it's best to be honest and up front with professors (and bosses, for that matter!) regarding how you're feeling physically, how many doctor's appts you have, etc. It helps if they understand the severity and chronic nature of what's happening to their student/employee.

When I had my first iritis attack, it was just after spring break. I had two music classes: one, had to drop, and the other I just barely passed with a C. My professor was lenient about me missing three weeks of school because HE had personally had iritis attacks in the past, so he understood completely. Honesty!

My iritis is getting worse, but I'm nearly a senior in college now. I'll do anything it takes to finish with a bachelor's.

My AS came on furiously during my senior year in college. It was *HELL* finishing up my double major in chemistry and biochemistry. I had a few months of just lying in bed because I felt sooooo sick and out of it. And all I had at that point was joint cracking. The pain hadn't even started yet [but by then end of spring semester my ankle was "sprained"]. Just that initial surge of systemic inflammation sucked the life out of me, though.

As far as career path goes... with my background, if you want to rise to the top and not spend your time being a non-thinking robot exposed to toxic chemicals all day long, you must get a phD or got a to a professional school like medical or dental school. The phD route involves 5-7 years of hard lab work and then another 3 years of lab work as a post doc. Med school has crazy hours etc. With this in mind, I am going to have to bail. What a shame! I was definitely on track to be a scientist until AS came. I've worked as a research technician doing full-time labwork alongside PhD students and senior scientists, and I just can't keep up with them because of my fatigue/low stamina. And the breakthrough pain certainly doesn't help.

The more I think about it, I need a career that allows me to set my own hours and work from home. I wish myself luck in pursuit of this career.

Career/education has been a major source of stress for me these past few years. How do you establish yourself in a career path and support yourself as a a young person with these issues? At times I have been kept awake at night hoping that I don't end up homeless or something when I am older.

I've found school to be so taxing, and sometimes it's really hard to keep up with things due to AS. It sucks! For me, my two downfalls are fatigue and constant pain. While I see everyone effortlessly glide across campus or running, I feel so left behind. Another thing I've noticed is every since I've started having difficulty with AS my mind has been very foggy. I'm not sure if it's the medication that does this, the lack of sleep I get due to pain or what, but the it makes the academic portion of it very difficult, and I've always been a straight A student.

A few things that I've found help:

-Be honest with your professor. Unless they have miserable lives, they will usually be understanding, but keep in mind that there is a limit to their understanding.
-Get good rest. I've found that the college party scene isn't a good idea. Staying up late night after night just doesn't mix with AS.
-Eat right! This is probably a "duh" bullet point but pay closer attention. I've noticed a difference when I don't eat meat and drink all the water I can stand and constantly snack on fruits and veggies. Try it out
-Have a support system. Besides us, that is. Everyone needs a friend to vent to, someone who understands or tries to understand what we're going through.
-Don't work if you can. I've done the full time student and full time worker routine for years and I recently quit my job. It might not be reasonable for you, but if you can swing it, it helps so much.
-Exercise. Finding 30 minutes a day to do any type of exercise helps with energy and arthritis.

Anyway, those are the things I've notcied makes the biggest difference over the years.

Good luck.

Chemman, I would urge you not to burn bridges at this point while you still don't have your fatigue sorted out. I am convinced that once you find the right treatment, you will feel 100% better and have your energy back. This could be a matter of months only.

As for setting your own hours, I have a Ph.D. and can perhaps give you some advice. Keep in mind that graduate school is one of the more forgiving occupations you can have for the next few years, precisely because you can to some extent set your own hours. Of course it depends on the precise field, but especially if you do something involving more theoretical or perhaps computational work (e.g., bioinformatics), you are often able to work whatever odd hours you wish and can often work from home or a coffee shop. Even if you do labwork, keep in mind that your fatigue is not permanent and once that goes away, you will be able (like I am already now) to be on your feet all day (in fact I feel better when I'm on my feet and moving around all day than when I'm still, which is not uncommon for AS).

This is not directly related to AS, but I found the book The Anatomy of Hope by the famous hematologist Jerome Groopman very inspiring. I'm referring to one particluar chapter in that book, where he describes his own experience with chronic debilitating back pain due to a botched operation that lasted decades, overlapping with his residency, his fellowships, and his practice as a doctor, and how he dealt with the struggle of only being able to sit for a few minutes in the lab, etc. I think it is a great read for anyone considering giving up, especially for someone like you and me whose prognosis is much better than his was.

Anyway, don't make decisions you may regret later based on how you feel right now.

I can relate to many of you in dealing with AS and going to college. I was hoping to be finished at the age of 26 or 27 with my bachelor's degree. Up until the fall of 2005, I was very healthy and active. I did very well in my classes (except math). I had my first iritis bout diagnosed on Nov. 4, 2005. At the time, I was taking eleven hours of classes. Fortunately, I was also taking online classes. I also had to instill eye drops every hour (including at night) in addition to taking predinsolone pills. I felt tired and did not have energy for anything. When I was not studying, eating going to class or my eye doctor, I napped. The eye doctor told me my left eye cleared up on Dec. 2, 2005. Trying to finish up a semester when I was not feeling well was not fun. But I managed to pass all of my classes.

The only time I was sick in 2006 was when I had a really bad cold and I did not have to go to the doctor that year at all. I did well in my classes and was going to get my associate's degree the following spring.

Shortly after my 25th birthday in Jan. 2007, my joints started to ache, I started feeling weak, my hair was falling out, I had lost a lot of weight. I was also having ankle and foot swelling around spring break. I was also taking yoga and dance areobics at this time for my P.E. credit. I went to the doctor who took x-rays and they could not find any broken bones, but he told me to take it easy. My yoga and areobics teacher was very understanding and let me modify my exercises and watched me like a hawk. It was a miracle that I finished off my semester in my yoga and areobics classes and my other two classes. I made A's and B's for that semester. On May 12, 2007, I graduated with my assocaite's degree.

Summer 2007 was not a fun one for me. I finally was encouraged to see another general practice doctor, who ran a bunch of tests on me. I was tested for thyroid issues, RA, lupus, and everything but AS. I was anemic and my vitamin D was very low. I was referred to a rhemy and had to wait until Oct. 2007 to see her. During this time, I was accepted at Houston Baptist University. During the years I was there, they did not offer any online classes. I started feeling a little better with the vitamins. HBU was on a quarter system until fall 2008. This meant I had classes that lasted for nine weeks and a short ten day break and classes started up again. Anyway, back to my health issues. The first rhemy tested me for everything but AS and gave me pills that did not do anything for me. I had to cut my hours and take fewer classes because I still did not feel like I can keep up with a full time load. During that time, I also had to take physical therapy (I would go to physical therapy about two hours before I was to be in class). I still had problems with my neck and feet and actually begged my rhemy to send me in for MRIs and more X-rays of my spine. She told me that these tests were just overkill and refused send me in for more tests. At that point, I was ready to fire her and go to another doctor. During the summer of 2008, I decided to see an orthopedic surgeon. He ran more X-rays and sent me for some MRIs, which revealed some arthritis, but the doctor was more concerned about my neck mobility. I had more physical therapy and I got a TENS unit. I finished physical therapy in the week classes started up again.

Fall of 2008 was interesting. I still did my exercises and was doing my field work in a second grade classroom which I served as a teacher's aide to the teacher and learned about lesson planning. It was frustrating about the fact that I had to have someone drive me to and form class and field work. Spring 2009 was good because I got to work with first graders and read to them for a month. I was not feeling up to taking the fifteen hours I needed for a quicker graduation, so I took twelve hours or less.

In the fall semester of 2009, I was ready to take a full load of classes with sixteen hours so I could get closer to graduating. Just when things were looking up, my right eye started to bother me. Back to the eye doctor. I had another bout of iritis and had to take eye drops every hour at first (during my waking hours) and gradually lower the frequency of the dosage. My eye doctor told me that my iritis was likely the cause of an autoimmune disorder and the next time I had a problem that she would refer me to another rhemy. I tried to talk her into refering me to the doctor then, but she did not want to put me through that. I wished I had pushed harder. I had to tell some of my professors that I had to leave the room to take medicine (some of my classes were an hour and a half long). My professors were very understanding. I remember how my Math for Preadolesents professor would ask me about my eye, she cared and was very concerned. That semester was when the swine flu and other nasty bugs were going around. A number of my classmates got sick and were coughing and sneezing. : If things could not get worse, I came down with a bad case of brochitis and had to miss several days of classes. My professors were understanding. In addition to my eye drops, I had to use an inhaler, take antibiotics and other pills. My energy level slowed down and I managed to push though the semester. My eye was finally better on Nov. 7, 2009, but my cough lasted until mid November. I managed to get caught up and finish my assignments. It was a stressful time because I still did not have energy from being sick and had to make sure everything was turned in and finishe on time. I made only one C and A's and B's in my other classes. I was proud of myself for sticking it out. I was disappointed in the fact that I could not be like a healthy college student and enjoy hanging with my friends as much as I wanted to.

Spring 2010 was a busy time for me and I did well in my classes, but still had aches and pains. I had to take summer school classes that summer so I could graduate the following spring. I was starting to feel tired, my hair was falling out, my joints were starting to swell again. I managed to stick it out for my summer classes. One session lasted five weeks and the other session last four weeks. During the last week of my second session of summer school, my eye was bothering me again. I waited until I was finished with my finals before calling my eye doctor.

She was able to see me the next day and I told her how my joints were swelling, my hair was falling out, and how tired I was in addition to my eye problem. I also told her that I was going to be going to do field work at one of the schools in a few weeks and I needed to have my health issues taken care of. That was enough for her to finally refer me to the rhemy that she works with. My eye problems was just simply a scratch in my eye. A few weeks later, I saw the new rhemy, who ran x-rays, blood work in addition to evaulating me. He also did x-rays of my spine, because I could not bend over to touch my toes.

I also started my fall semester during that time. Field work didn't start until the end of that September. I still did not feel well. Between the time of my first visit with my rhemy and the day I had to go back for my follow up, I ended up in the ER during Labor Day weekend with my left knee swollen and could not even bend it. My first thought that I had a blood clot.
I did not injure it because I did not have the energy to exercise or could recall falling or twisting it. The ER doctor x-rayed it. I simply had too much fluid on my knee and had to have it drawn out a few days later. The doctor told me to stay off of it as much as possible. Well, that was not an option. My Statistics professor assigned homework for that weekend the Friday before and wanted it turned in the next Tuesday and take a quiz. Since I could not use the computer to show how I solved my statistics problems, I had to do it all in pencil and paper. To get the full credit for my homework, I had to show my work. That meant that I had to go up to the college and turn it in. Tuesday, my mother had to take me to the school just so I could turn in my Statisics homework and and tell the professor that I had to leave. I had to limp my way to the classroom. A number of us waited for fifteen minutes only to learn that the professor was absent, but would be back on the following day. I was ticked off. It would have been nicer if he had his secretary call or leave us a message on our answering machines to let us know that he was not going to be there. The next day, I had to have the fluid drawn off my knee and the doctor wrapped my knee in an ACE bandage. I was again, told to stay off my knee as much as possible. The next day, I went back to school anyway to turn in my Statistics homework, take two quizzes (the professor should have had us take one quiz that day). I will never forget how that fool professor behaved toward me that day. At the end of class, I waited for all of my classmates to leave the room so I would not be in their way. As I stood up and started limping out of the classroom, that fool walks slowly in front of me. It was obvious that my knee was bandaged up and I was limping, that professor was rude. I even sent him an email the day before that there might have been the posssiblity that I had to miss class because of my knee problem. He should have either let me pass or walked around me.

The next week, I got the news of my AS. I was glad they found out what was going on, but sad that my AS would change my life. I started feeling better with Remicade and methotrexate. I had to miss some field work time, but I made the time I missed by staying in my field work an extra week. My mentor teacher and my supervising professor were understanding and I even had doctor's excuses to prove that I had a medical reason to miss some classes for treatments. I had no idea of what to expect out of my first treatment, so I told my Statistics professor the possiblity of my absence the next day in his class. Well, you know what he said? He said that he hoped my treatments would help my allergies and coughing (I did have a cough from my ragweed allergies) and had to tell him that the treatments were for an automimmune disease. You'd think that he would have brain. He actually had the nerve to tell me that infusions were expensive and that my treatments were not working. I was glad to get out of his class with a C in Statistics. I still laugh about how brainless I thought he was.

Anyway, I had to change my degree plan because student teaching did not work out for me and I graduated on May 14, 2011 with my General Studies degree. Maybe in a few years, I may go for my master's degree and maybe, try to go for teaching again. As of now, I may settle for clerical work, or substitute teaching. I still have not heard from the school districts yet, as I sent out some applications. I hope to hear something soon about a job possiblity.

For those of you who are still in collge, you can be successful if you are persisitent and do not give up. Good luck to you.


Thank you for taking the time to read my very long story about how I got through college and how my AS afffected me during that time.

I got through college, 2 master degrees, and a PhD program with AS. The PhD took more years than I thought it would as my health problems, including fatigue and chronic pain became more difficult. But getting through the study programs is actually not as hard as working if you end up in the wrong career. My advice is to not assume you will be as well in the future as you are now. Age alone will make things more difficult over time, but my disease got dramatically worse when I was around 40. Try to aim at a job that will allow you to work flexible hours, so you can work around your disease (flares or fatigue). Don't aim at a physically demanding job, unless you enjoy working out and staying in top shape. Most schools and professors can be quite flexible on deadlines if you have valid medical reasons. Don't be afraid to ask for some accommodation if you need it. But do your best to not have to ask -- don't overdo it or take an overloaded schedule. Lack of restorative sleep can make your whole day bad, with more pain and fatigue, and lowers productivity. That is what I have learned over 30 years of AS with much of it being a student.

I've thought about changing my career path but I'm not going to let this get me. I'm currently in nursing school. It is tough. I noticed this quarter my symptoms were a lot worse while I was in school. I took 17 credit hours this quarter and worked full time as a nursing assistant night shift. It was tough. When I got on break, my symptoms were a lot less. It's a lot, being young and knowing that you are going to be in pain the rest of your life. You feel like you're old. I just started some antidepressants and I think this is going to make a big difference handling stress this winter quarter. Just manage the pain the best you can. You have to live so try to make the best of it. If it is getting the best of you (like it was me), you might need additional help. For me that additional help was antidepressants. Good luck!

If you don't mind, which medication are you using for depression?

Response to these meds depends on the individual patient's biochemistry, but I am just curious.

Hey, I definitely understand what your going through. I was diagnosed with Spondylitis, Sjogren's and some other stuff my junior year of college. I was 21 and thought I was going to lose my mind. I finally realized by after the first year of struggling by myself that I needed help. There are people on campus that are there for you. I confided in one of my professors and she helped my through all of this.
I talked to the office for Students with Disabilities and they helped my out a lot. Were not disabled but we do need extra time to get to classes and if we happen to be sick one morning and miss class.. We shouldn't have to run to the doctor every time to get an excuse. I have arthritis in my hands so I got someone to help me write my notes. Auburn is awesome at making accommodations as long as your willing to make the effort. Its hard.. Even with help when you don't feel good everything else becomes 10 times harder. Make sure you have a good line of communication with a professor. Someone who can help you out. I would love to talk to you more. If you have any questions just ask me. And what ever you want to be.. don't let change your mind. I want to be a physical therapist.. that is a terrible job with a back problem but I love it. Hope this helps!