Saturday, September 25, 2010

What's In a Name?

So I recently got a Twitter (follow me!) and have noticed some interesting things about myself in the process. My Twitter name is lupiestudent, because I meant for it to go along with this blog. However, identifying myself this way has taken a little bit of an adjustment. I have other accounts that do not use this name and seeing myself so clearly identified with my lupus throws me for a loop sometimes.

I guess this has led me to wonder how much of my life I want defined by my lupus. I live my life (whether smartly or not) like I do not have it. Whenever it acts up I try to go on instead of doing the things I know I need to do (like slow down and take a rest). So I guess I can say I live in a kind of denial about my lupus. When I see something that clearly states I have it, I just get uncomfortable.

There is a possibility that I will change my Twitter name in the future. There is also the consideration of future employers, insurance companies, etc. finding out about it and then having to explain the lupus. I try to keep both this blog and my Twitter as anonymous as possible. Well, as anonymous as you can with your picture and state listed.

So, maybe I will get used to seeing myself identified as a lupie and maybe not. I guess time will tell.

In other news, my prednisone taper is going...meh. I have had increased joint pain and an attack of pleuritic pain so bad yesterday at work that I had to lay down on my desk while my boss was out. Yes, on my desk because the floor was too far away. I really, really want to be off this stuff so I am going to push it as far as I can.

I hope everyone enjoys this first weekend of fall! Best season ever!

Tuesday, September 21, 2010

Adventures in Prednisone Tapering

I finally got the approval to start tapering my prednisone! It is a "very fast taper" according to my rheumatologist and both she and I are unsure about how my body will handle it but I am willing to give it a shot. I am tapered to 20mg a day on Sunday and will continue on that until next Sunday. Then I will decrease every week until 10 mg, then 2.5 after that. I see my rheumatologist again in the middle of next month.

All in all I just have been very, very tired but that could be for many reasons. I think the prednisone and my bakery schedule during the summer messed up my sleep cycle so I can no longer sleep in and wake up between 5:45 and 7:00 am every day. Occasionally I can get back to sleep but it is not a restful sleep. I am also extremely busy during the day so I know I am not getting enough sleep as I should.

When I saw my rheumatologist last week she gave my knees the diagnosis of "periarthritis" meaning that the ligaments and tendons are all involved as well as the joints. This is not surprising as I have contractures in my knees and cannot straighten them out all the way. She also suggested I speak to my primary care doctor to see a neurologist again about the increase in migraines/headaches I have been having.

Sorry I have not been posting that much. I am just so busy and all my free time has been dedicated to homework and resting. I hope I can get back to a regular blogging schedule as I have a few that I am working on.

Thursday, September 16, 2010

In Honor of Invisible Illness Week: 30 Things You May Not Know about My Illness

1. The illness I live with is: Lupus and endometriosis. You can throw a couple other things in there as well, but most relate back to these two.

2. I was diagnosed in the year: 2008

3. But I had symptoms since: 2002-ish

4. The biggest adjustment I have had to make is: Accepting the reality of chronic pain/illness and how it makes it harder to be a normal college students. I am constantly assessing the way my body feels to make sure nothing is seriously going on with it. I am unable to do many things my friends are able to do because it leaves me too tired and in pain or worse, in a full blown flare.

5. Most people assume: That I do not live with chronic pain.

6. The hardest part about mornings is: Pain level assessment and then moving if it is too bad.

7. My favorite medical TV show is: Hmmm...Trauma: Life in the ER? Because if I do pursue nursing/medical school then I want to work in acute care.

8. A gadget I couldn't live without is: My computer. Tried it. Doesn't work.

9. The hardest parts about nights are: I am one of the worst insomniacs I know. Also, my pain levels are worse at nights most of the time.

10. Each day I take: Immune system modifiers, pain medicine, medicine to keep my stomach happy with all the medicine, migraine preventative and hormones for the endo. In other words, far too much.

11. Regarding alternative treatments: They are all fine and good in conjunction with traditional medicine.

12. If I had to choose between an invisible illness and a visible one I would choose: Tough one. I feel like I would be judged less and understood more if people could somehow "see" lupus. If you were to look in my insides you would most certainly "see" endo, but that's a little difficult. However, I like that I look healthy, and when lupus made my hair fall out I was very self-conscious. So I guess I would choose invisible because of the way I militantly try to live my life as normal.

13. Regarding work and career: Still trying to figure this out. I have a general idea of what I want to do with my life and I hope lupus doesn't try to take that away from me.

14. People would be surprised to know: Most people I know now did not know me pre-diagnosis so I think they would be surprised at just how sick I was back then. It will be almost three years since my last hospitalization which was absolutely unheard of just a few years back.

15. The hardest thing to accept about my new reality is: The constant reassessment of abilities. I know what I want to do and I hate when my body slows me down.

16. Something I never thought I could do with my illness was: I never believed I couldn't do anything. As the saying goes "I may have lupus, but lupus doesn't have me". It may take longer or be done in a different way, but it gets done.

17. The commercials about my illness: Do not accurately portray it.

18. Something I really miss doing since I was diagnosed: Going out with friends and being able to enjoy myself instead of having to leave early because of pain/fatigue. And wearing heels!

19. It was really hard for me to give up: My perception of a "normal" college student/young adult.

20. A new hobby I have taken up since my diagnosis is: Blogging!

21. If I could have one day of normal again I would: Clubs/bars and actually enjoy it.

22. My illness has taught me: Compassion and unfortunately, who I can depend on and who I cannot.

23. One thing people say that gets under my skin is: I hate judgments about the amount of medicine I take. TRUST ME - I hate it too. Also anything about not looking sick, blah blah blah.

24. But I love it when people: Offer to help, because I hate to ask for it. And when people try to understand.

25. My favorite motto, quote, etc is: Nothing to do with chronic illness. "Once good thing about music, when it hits you, you feel no pain." - Bob Marley. But I guess that can relate to lupus.

26. When someone is diagnosed I would like to tell them: Hold on. One day there will be a cure. Just keep faith and do the best you can.

27. Something that has surprised me about living with an illness is: How alienating it can be. You really see the best and worst in people.

28. The nicest thing someone has done for me when I wasn't feeling well was: Make me soup!

29. I'm involved with Invisible Illness Week because: I want to raise awareness so maybe people will be less judgmental and more accepting and understanding.

30. The fact that you read this makes me feel: Great! Thanks for sticking through it!!

Sorry I have not been posting much lately. I have been so busy. I am hoping to get adjusted soon so I can get back to regular blogging!

Thursday, September 9, 2010

Thoughts On My First Week

It's gonna be crazy. Tuesday, Wednesday and Thursday are going to be marathons. On Tuesday I have class 8-10:45 and then again 1-6, on Wednesday I work 10-1, have class 2:30-3:20 and then work again 4-8 and Thursday I have class 8-4. Whew. Mondays I work in the morning and have one class in the afternoon and on Friday I just work in the morning.

I have already worn myself a little ragged and I am 3 days in. I was exhausted and in pain by the end of today but hopefully that is just my body trying to get readjusted. And also for some reason sitting in the desks is taking a toll on my hips, but I hope that is just temporary too. I do not want to have to walk around with a cushion. In fact, I don't think that I would. I would probably just grin and bear it.

My roommate situation is going well. There are only three instead of four of us in the apartment right now and both girls are pretty quiet. I haven't interacted with them much and I do not think the other two have even met each other.

Anyway, I hope everyone has a great weekend!

Saturday, September 4, 2010

Back to School

So I leave to go back to school tomorrow. I am not packed, but I just finished my last shopping trip so I really have no excuse. Well, actually, not all the clothes are dry, so...

Anyway, this semester is gearing up to be just as crazy as all the other ones. I am going to continue working both jobs and take six classes, plus I just signed up for intramural soccer. It's a little bit of a crazy schedule, but I am hoping all this activity helps me keep off the prednisone weight. My biggest fear, of course, is weight gain. I can stand gaining it in my face, as I definitely have, but not anywhere else. The face will go down once I stop, but I have worked too hard to lose the weight everywhere else to go through it again.

I do not have a meal plan this semester so I will be entirely on my own for food. This is both good and bad. I can have control over everything I eat and control the fat, calories, sodium, whatever else, but I also will have to do more planning out of what I eat. Of course, I think I will be able to get into the dining halls sometimes when I eat with friends.

I'm looking forward to starting this year. It's my last as an undergrad (finally!!) so hopefully it will go well!