Tag Archive | fatigue

30 Days of Truth- Day 1

May30

30 Days of Truth- Day 1- What do you hate about yourself?

What I HATE about myself?? Hate is such a harsh word! But if I had to come up with something, I’d say I hate how I cannot quit while I’m ahead. I should know by now that I have a limit on how much I can do. For example, 3 days of waking up early and doing fun stuff non-stop until late at night. The drinking with family and friends probably didn’t help either. But I have noticed a pattern in my behavior. That pattern is, if I do lots of stuff, for an extended period of time, I will pay for it via my Lupus. First, my grandmother came in early May. We had tons of fun, planted lots of flowers and vegetables, and had fun for days and days. Well, a few days after she left, I was hospitalized (of which I wrote about in the previous blog).  I got out of the hospital and within a week my cousin and her husband came to visit. We wanted to give them the ‘Colorado experience,’ so went out to eat at a restaurant in the mountains, we took them to Red Rocks amphitheatre, and went to the casino….all in the first night! I also took them up to Estes Park, and Rocky Mountain National Park, Old Chicago to have drinks with friends, hot tubbing, and a BBQ. Well, by the day they left (Monday), I could barely get out of bed because everything hurt so bad. My wrists, elbows, knees, and ankles were all swollen and extremely painful. My dad had to help me walk downstairs because it felt like I was walking on two broken ankles. Now, I do have to admit that I had a bit to drink the night before, which probably compounded with the fatigue and lupus symptoms. By Tuesday I could walk alright, but I stayed in bed the entire day due to extraordinarily painful stomach cramping and spasms. Which is the same thing that put me in the hospital a little more than a week ago. The only reason I didn’t go back to the hospital is because I just had a full workup and knew I would be ok. So I loaded up on the stomach cramping medicine (doxycycline) which helped minimally at best. It wasn’t until I took two of my morphine pills that I was able to function a little, and went downstairs to make some food to eat.

I was wondering, if anyone who has lupus has this type of stomach issue. It doesn’t have to be accompanied by an ‘upset stomach,’ but can be. The way I’d describe it is like gas pain x 50….or more. And it’s throughout my intestines. A friend and I call it the demons in my stomach, because sometimes you can see it spasming all over. The doctor in the hospital thought it is most likely inflammation in the lining of my intestines, kind of like pleurisy of the lungs…which IS a common lupus symptom.

Anyways, I went to my new primary care physician today and I absolutely love her. Even though I was 25 minutes late (oops!) she sat with me for the better part of an hour, listened to all of my crazy history, and actually seemed to comprehend it and take it all in. She changed around my sleeping medicines because I was concerned 3 different medicines were too many. So now I am going to try 2mg of Klonopin every night instead of Ambien, Klonopin, AND Trazadone. She also refilled my morphine— thank goodness! (I need it worse than ever with this new stomach issue I’m having). She gave me the 30mg extended release for daily use and 30 pills that are 15mg of instant release for breakthrough pain. She also changed my stomach spasm medication to something way more intense, called DONNATAL. Hopefully it will work better, but I don’t pick it up from the pharmachy until tomorrow. So I’ll have to let you know on that one.

My first physical therapy appointment (evaluation) is tomorrow, and hopefully doing physical therapy again will help relieve some of my hip and knee pain. I’m excited to go to the physical therapy appointment, because they will be able to tell me what kind of workouts other than just yoga that I can do at the gym.  Because I am ready to work out and get into super good shape! I have a new goal: to climb all 52 of the 14′ers in Colorado. [for those of you that don't know, that's all the 14,000+ foot mountains in the state]

Back to the subject of what I hate about myself… I hate how I just can’t quit while I’m ahead. As I was saying above, I have definitely noticed a pattern. I will just go, go, go, and I keep going, until I’m falling asleep at the dinner table- literally. Then I’m in bed for days because I just had to have fun with everyone else. I need to learn my limit, which I am quickly doing.  Although, health wise is not the only think I don’t quit while I’m ahead with. I typically talk myself into a hole and wish my foot into my mouth!!! lol.  Hate is a strong word, but I guess being too determined is an alright thing to have to hate about myself.

What about you guys? What is something you hate about yourself? Hopefully nothing! But I’d love to hear your thoughts!

Hopefully the physical therapy appointment goes well tomorrow. I’ll write about it! Until then, ttyl!

xoxo Beccaboo

I’m Still Here!!!

Apr7
DateSATURDAY, APRIL 7, 2012 AT 6:47PM

I’m still here!!! By that, I mean I’m still in Philadelphia. Looks like we aren’t leaving for Denver until the end of the month. Also, I’m still here in the blogging world. I apologize for my absence. I have mostly been sleeping. Since I got the chemotherapy last (in mid March) I have been terribly fatigued. I guess that is part of life with lupus. “Chronic fatigue syndrome.”  The past few days I have actually been awake for most of the day though. So hopefully that bout of fatigue is over. I believe today is the first day I will have gone without a nap in at least a month! Sad, but also exciting.

Meanwhile, a lot has been going on. As you know, I live with my parents right now in Philly. They are moving to Denver for my mother’s job- my mom actually moved out there a few weeks ago. My dad and I are stayinig out here until we get packed up- in about two weeks. They already found a house in Denver and close on it at the end of the month! It’s pretty nice, I’m excited though to customize my bedroom and stuff.

It’s hard to believe SUCH A BIOHAZARD that has to be handled with such carefulness, is what they chose to put in my body: 

But good news…On the subject of LUPUS… I am officially finished with chemotherapy!!! Now I am on a medication called CELLCEPT. Which interestingly enough is an organ transplant anti-rejection drug.  “It works by weakening the body’s immune system so it will not attack and reject the transplanted organ.” In my case, the ‘transplanted organ’ it’s trying to save is my WHOLE BODY. Because the very nature of my disease is that my immune system IS attacking my (good) organs. I’m only about a week into it, but it seems to be working well so far.

I also started a medicine called Cymbalta. It is 1) for anxiety, and 2) it treats my kind of pain!!! (i.e. bone, muscle, and osteoarthritis pain!) The good part is that it’s a non-narcotic that works by “stops the movement of pain signals in the brain.” I’ve been on it for a few weeks and so far- it’s generally working better than the morphine! So now that I’m out of my sleeping spell, I think things are going pretty well for me.

I have one last Philadelphia appointment with my neurologist and one with my rheumatologist next week… then I’ll have to find the same in Denver. I think I already found a set of rheumy’s in Denver at University of Colorado Hospital. Luckily my rheumatologist here offered to talk to a doctor I found in Denver. I say ‘luckily,’ because I ordered my medical records from Hannemahn Hospital just since November… and they came in a box in the mail. The stack of paper is literally 2 feet tall. I think the doctors I hand that to might get a little frustrated/ or just laugh at me. Anyways, I’m feeling pretty confident that it will work out and I will be in good hands (not to mention at one of the leading lupus research hospitals!)

I think I may have my dad take me out to my favorite sushi restaurant tonight… and that’ll be out Easter celebration. Haha. Sounds like a good excuse to eat some sushi to me!

I plan on uploading a bunch of pictures soon, hopefully in the next few days I’ll be adding stuff! So be sure to check it out! For now, I’m going to check on some sushi!   Happy Easter!

Where Am I Right Now?

Mar19
DateMONDAY, MARCH 19, 2012 AT 2:42AM

Such a multi-faceted question. Right now I am in bed. In Philadelphia, PA. I haven’t gotten out of bed since my chemotherapy treatment on Thursday morning (3/15)…other than to get a drink so I could take more medicine, go to the bathroom, or today- make a meal. For the first time since Thursday- I went downstairs and cooked up some macaroni all by myself. Which I couldn’t eat, because I was too sick to my stomach. Where am I? I am hopeful tomorrow will be a better day. I’ve been telling myself that since Thursday and I think I slept an involuntary 60 hours out of  the past 72. However…. I’m awake, and I’ve been awake for more than 6 hours! And I am feeling better than I was. So that is promising for tomoorrow! Hopefully I will be able to  get up around 10am and actually be productive.  (late, I know- but Friday I got up at 10PM!)  Some people lay around all day out of laziness, and/or love it but I CAN’T handle it anymore! Tonight, when I stand up it only feels a little bit like I havepudding running though my veins. Yes, pudding. That’s the best way I can describle it. Or as if my organs are made of lumpy jello.

The super weakening jello-like, pudding feeing in my veins, has been downgraded to non-contsant. So hopefully…tomorrow I can fix up my room/finish washing my immense amount of clothes to get ready for the big move.  It’s just a couple of weeks away. I’m hoping we (my dad and I- my mom is already in Dever working) can get packed and out of here in less than a month so I won’t have to do any more chemo! I’m guessing the no-chemo part will be a failed plan, but I don’t know how well I can handle another round of it. They might as well just send me up to a hospital bed next time until I recover from the treatment.

Back to ‘Where am I?’ I am a recovering newly diagnosed lupus patient- not letting lupus define me. I’m determined to get back to good health- better than before maybe. I’ve been living in Philadelphia for a year, where I moved back in with my parents to take a hiatus from college. But I am moving to Denver, CO. I’m moving near where I just came from almost exactly a year ago. It’s weird though, because I feel more now that I’m moving “back in” with my parents than I did a year ago. I’m not sure if it’s because I’m more reliant on them with money, healthcare, housing, etc, or what… but I feel like I’m jusst now moving back in my parents. Weird huh?

I am excited to move. I am sad to leave the girlfriends I’ve met here, but excited to get a fresh start. Now that I have a diagnosis, a name and a treatment plan for my lupus- I’m ready to get ON WITH THINGS! Where I am right now, is not where I am staying.

When I get moved, I’m going to learn to the piano. I had lessons when I was younger, I know how to read music and all. I love singing… so I think it will be a soothing release, and who knows, maybe in time I’ll post something if it’s worthwhile :)

I’m also going to start back my college classes so that I can finish off my degree and work on my masters. I’m certainly not giving up on anything. Just trying harder.

In addition to getting serious about the piano (in my case-keyboard), finishing school, I’m joining Lifetime Fitness ASAP when I get to Denver, getting a trainer, nutrition program, and a healthy routine. I think it’ll be easiest to make these adjustments as I’m already in the midst of change. Right? right.

I know, totallly random post again- but I had to say something to feel alive again! I didn’t even open my commputer for the past 3 days. Now that’s a big deal.

Ps- Chemotherapy sucks. But I’m gonna kick it’s butt tomorrow doing laundry, cleaning, and doing some minor shopping. Go me!!