View Full Version : IV Steroids Again =(
11-03-2011, 05:34 PM
Went hoping to get some help today and I guess I did but not what I wanted. I am really tired because has been a long day but basically I've been sick and not going to school for 2 weeks, rheum was out of town finally came back today, she basically said well your not taking your meds (I am) and I sat and screamed at her til my mom told me to call down because I was pissed. I have been fighting to be seen for over a week and when I finally am I get that s**t? Thanks. I was so mad. She said all she could do was the pulse steroids, basically because she doesn't believe I'm taking them now. Actually getting them was fun too. Took almost an hour and 4 pokes for them to get an IV in. =( and one thing Im really weird about is IVs I really hate them. Today has been draining.
11-03-2011, 05:40 PM
sorry you are having such a bad time doctors can get you so mad at times, i have trouble having iv put in usually takes them about 8 prods i have bad veins hope you feel better soon hugs
11-03-2011, 05:54 PM
Ritz, it sounds like your relationship with your rheumy is affecting your care. Have you looked around to see if there is another rheumatology group in your area that has good ratings? The thing is, your current doctor has probably put in your chart that you are not taking your meds, so you will probably have to talk about that if you change doctors. In the meantime, can you take your meds in front of your mom every day? That way she can tell the doctor that you really are taking them. I know that is kind of demeaning, but sometimes you have to do things that are hard in order to re-build trust.
I hope you feel better soon. Have you let your professors know that you are sick and asked about making up work and getting notes?
11-03-2011, 06:18 PM
I talked to them last at the beginning of the week. I plan on making appointments to see all of them sometime next week to get caught up.
Im just stressed. So done with docs right now. I saw 3 rheums today. Only one, MINE, was ridiculously rude and acted like a complete you know what! I don't like seeing her and my mom always defends that she is a good doctor. UGH
11-03-2011, 08:38 PM
I agree with Gizmo. It sounds like you need a new rheumy - one who can treat you like an adult.
11-04-2011, 04:21 AM
I'm afraid to get a new doctor for many reasons one of which is the one gizmo said about having in my file I don't take my pills. She flat out said you aren't taking the medrol at all much less did you up them. You lost weight and you aren't puffy at all. For 1 I only went from 4mg to 8mg this week. I wasn't even that puffy on the 8mg last time period. And second of all, since when are doctors supposed to judge medication intake on how you look??? I LOST weight because I always feel sick to my stomach for a week or 2 when I up my steroids and because of that I have only eaten lunch (no breakfast) maybe 2 days in the past week and I've barely touched my dinner. I hate when she does that. I was almost in tears I was so mad and my voice was shaking which I think is when my mom decided I was 100% not lying and stepped in because my rheum was telling me to start actually taking the meds and she'd see me back in 2 weeks. 2 weeks?!?!? Yea Im really going to miss another 2 weeks of classes because you don't want to believe me woman because you never think you're wrong.
11-04-2011, 08:37 AM
Can you switch to one of the other rheumies you saw yesterday that were nice to you? Usually you have to get permission to do that within a clinic, but it might be worth a try. You might think about writing a well thought out letter calmly refuting what the rheumy accused you of, and request that it be added to your chart. You do have the right to amend your medical records if they are incorrect.
Good for your mom for sticking up for you - I still think it would be a good idea to take your meds in front of her so that there is no doubt in her mind that you are doing it. Then she can be 100% behind you instead of waiting until you are shaking and in tears to believe you. You've had to learn a very hard lesson about how fragile a thing trust is and how hard it is to win it back. Unfortunately, your health is at stake, so you don't have the luxury of being a normal college freshman. You do, however, have an incredible opportunity that many equally intelligent people your age don't have. Your meds and a good working relationship with your doctors will be critical to being able to reach your dreams, so try to see them as allies and not enemies. The IV steroids are a tool to help you finish the semester.
Are you still working?
11-04-2011, 11:48 AM
Oh, Ritz, I'm so sorry things turned out that way. Somewhere in Missouri there is an incredibly irate girl who is cursing that damn doc on your behalf!
11-05-2011, 06:21 PM
Going to keep it as short and sweet as I can cuz hands are real swollen. All 3 days had to have IV team come because they poked and proded too much and still couldnt find good veins. I look like a drug addict! I didnt fall sleep til after 6 last night/morning and I been tired all day. Work called because I was supposed to work today and I didn know. They were real nice about it though and just take me off schedule tomorrow and monday so I wont work til next saturday. Im really glad I told my manager I had lupus when she hired me I think it helped because she was so nice and just told me to bring in my papers from the hospital. One less thing to worry bout now. I hope swelling goes down and I get some sleep.
11-06-2011, 08:30 PM
I hope that you are resting and feeling better.
Pace yourself, and don't try to do too much too soon.
11-06-2011, 09:21 PM
I have been very lucky to have so many understanding people in my life right now. All my professors (except one who NEVER answers my emails) have said that they will meet with me this week and help me start to get caught back up. Managers are being nice and told me they will find someone to cover my shifts until next weekend. I have been laying down, trying to sleep, trying to get myself to eat some. I've been in a funk the past few days. Feel really down in the dumps. I think its just all the meds I guess? My hands are still puffy but not nearly as bad. Its still painful though. My knees are acting up so bad right now. They don't like steroids, I don't know why. One of the spots they gave me an IV looks infected or something. I cant straighten my arm right and theres a funny scaby swollen red ozzy spot, should I call them about it or just put stuff on it to keep it from getting worse? I haven't been hungry in a week. Barely eating even when we have good food. My step dad went out of his way to make a really nice dinner for me last night and I couldnt even finish it =( I have also been really dizzy today. I dont know why my body doesnt seem to handle these infusions well. They help in the long run though I keep trying to keep that in mind. Sorry if this made next to no sense I am really tired lol
11-07-2011, 10:16 AM
I'm sorry the meds that are supposed to make you better are so hard on your body. If you have a place from the IV that looks infected, you should call someone. You don't want it to travel into your blood stream. Steroids make you more susceptible to infections, so be very cautious.
Good news about your professors. I hope you are able to catch up and feel better quickly. Hugs!
11-08-2011, 05:19 PM
Calling the doc tomorrow Im still feeling bad. I am trying to down play how much I have been missing in school when talking to my mom but Im starting to worry. I missed something like 3 quizes and at least 2 tests. And thats in the 3 classes I have actually heard from my professors. I went to vote right up the street, and could barely even drive because it hurt to brake, eccelerate, turn, switch from park to drive. Everything felt so hard to do. I don't think its safe to drive 15 min away to school during rush hour on the highway if I cant make it less than 2 min away. I dont really know what to do. My muscles all feel like they are being stretched or something. And I have fallen about a million times, also haven't mentioned that to my mom other than Im really dizzy. I have fallen down the steps 3 times in the past few days. Not bad falls though I just suddenly feel like the steps are gone and I fall down into the banister. Im lucky the banister caught me the first time it happened because I wasnt expecting it and lost my footing too. I think I broke the banister.....lol but seriously Im afraid to be alone doing stuff around the house. I was alone with my 5 year old brother today and told him like 5 times if he heard sissy fall that he needed to come find me and see if I needed help. My pulse is really high again, which Im guessing is from the roids but I dont know. 140 is not a good bp to just be walking around with.
11-08-2011, 07:04 PM
Oh Ritz, this really stinks! The only good thing I can think of to say about all of this is that now the rheumy has to believe you about taking your meds. Your symptoms do sound really scary and I hope the doc gets you in right away tomorrow. Thanks for keeping us up to date. Sending you good thoughts.
11-09-2011, 12:22 PM
My doctor won't see me until next week. I really don't know what to say right now other than I'm really pissed off. She said this is just all stuff from the steroids. I can see why this happened last time because I had 3 days of infusions, then was on like 36mg of medrol. While I did just do the infusions it was days ago, and Im only on 8mg of medrol. I do not think this should still be happening 4 days later!
11-11-2011, 12:05 PM
I felt so awesome deciding to try to go to 2 of my 3 classes today. I get to chem and they are going over a test I missed. She made it sound like we would be doing more than just that and would get to lecture so I stayed. 40 min later she is still helping everyone figure out what their doing. So that was a complete waste of time. Ate lunch with my friend and went to go to my last class and guess what. ONLY 4 PEOPLE WERE THERE. He apparently cancelled class in class the other day, Im guessing anyway, because its a huge class and no one else was there. I was so mad. He is the one who never emails me back also. I am giving him a TERRIBLE review at the end of the semester and plan on giving him a piece of my mind in class on Monday about how I think its a bunch of crap to not email students when a class is cancelled. I wish I had never even gone today it was a waste of my time and gas and energy. I thought 11-11-11 was supposed to be lucky????
Awe sorry that really sucks, I hope you get better soon! I think every lupus patient yells at their doctor at least once, I know I have multiple times. Being sick always makes your emotions really crazy lol.
11-11-2011, 03:13 PM
Steroids make you a little crazy too. Thats my excuse anyway =) haha. It has been a crazy few weeks.