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ritzbit
03-08-2011, 10:34 PM
Was admitted to Childrens after my doctor appointment today. She seemed really worried about my feet because they hadn't gotten any better this past week on the 30mg prednisone. I was hooked up on IV steroids and I have to go back again tomorrow and the next day for the same thing. She didnt tell me in her office but we saw later she wrote that there was modeling on my soles of my feet and we dont know what that means. Anyone here know? Im really worried about all this because I dont know what all is going on with me right now =( They ran more blood work tonight so hopefully that will give some answers.

tgal
03-08-2011, 11:12 PM
Hey Ritz! Are you sure it said modeling and not mottled? Mottled is described as follows"

Mottled skin is patchy discoloration indicating primary or secondary changes of the deep, middle, or superficial dermal blood vessels. It can result from a hematologic, immune, or connective tissue disorder; chronic occlusive arterial disease; dysproteinemia; immobility; exposure to heat or cold; or shock. Mottled skin can be a normal reaction, such as the diffuse mottling that occurs when exposure to cold causes venous stasis in cutaneous blood vessels (cutis marmorata).

Mottling that occurs with other signs and symptoms usually affects the extremities, typically indicating restricted blood flow. For example, livedo reticularis, a characteristic network pattern of reddish blue discoloration, occurs when vasospasm of the middermal blood vessels slows local blood flow in dilated superficial capillaries and small veins. Shock causes mottling from systemic vasoconstriction.
Read more at http://www.wrongdiagnosis.com/s/skin_conditions/book-diseases-8f.htm?ktrack=kcplink

ritzbit
03-09-2011, 07:06 AM
Im not sure =( they just kept looking at the bottom of my feet saying thats not good, and I dont know what it is because I cant bend anything enough right now to even see what it looks like! I like how they just kept throwing things out there then going and typing things up then would leave and come back and eventually they were like "hey were admitting you for and IV infusion" and I was so confused. Then my mom said later my paperwork said somthing weird which could have been mottled I didnt see it because I was helf asleep. Neither of us know what it is. I dont know what to think because I know they dont just pump you full of steroids for 3 days over nothing.

I also like that my doctor flat out told me I obviously hadn't taken my prednisone or cellcept because "your face isnt puffy at all and you actually lost 2 lbs since last week." What kind of statement is that? I've been happy that I didnt get a puffed up face from all this freakin medicine and she accused me of not taking it because I didnt? And I felt really sick to my stomach for days last week and wasn't hardly eating and me and my mom both told her that. My mom flat out said I see her take all of her pills and you need to listen to her because Im worried. That really just aggravates me that thats always her first conclusion about everything with me. I know I've given reason but when everyones saying hey shes taking her medicine and this is still what she looks like then maybe she shouldnt say that because it makes me incredibly angry.

mountaindreamer
03-09-2011, 07:35 AM
morning ritz,

yuk. so sorry to hear about the IV steroids...i know you and your mom are worried, and i hope everything works out ok. please keep us posted.

i don't have any information about what is happening with your feet....however, Mari certainly provided some great information. thank goodness we have members like her who can search the internet and find this information.

best of luck, and i will be sending you gentle hugs.

ritzbit
03-09-2011, 07:46 AM
I have another infusion today and tomorrow at 1:30. I see my doctor again after the one tomorrow and I guess I'll know more then when I talk to her. I am not looking forward to more of this IV today. I hate getting them. I dont know where they're going to poke me today. I wish they would have put in an IV that could just conviently stay in my hand for 3 days so they didnt have to do it again each time.

SandyR
03-09-2011, 07:51 AM
Ugh - this doctor is still not listening to you when it comes to those meds and that really aggrevates me for you. I know you had a period of time where she was right not to trust you with them but that was about a year ago - maybe even two.

Thank goodness your mom was there to stand up for you. That makes me very happy indeed. I know it's been hard getting your parents to understand exactly how sick you have been feeling and thankfully right now she can see it and believe it.

I know you didn't want to go to the hospital but I'm glad that the doctor is being so aggressive in treating you right now. Vasculitis is not anything to play around with. I think the chart probably said mottling like Mari said. I know, as a diabetic, it is something I am supposed to routinely check my feet for as Mari correctly pointed out - it is a sign of poor circulation and can also be a sign of underlying disease activity in your body. Try to keep your feet elevated above your heart as much as possible right now. Your doctors probably already told you that. That'll help bring the swelling down quicker. (((hugs)))

ritzbit
03-09-2011, 07:57 AM
I told her I was willing to do anything to make my feet feel better. I hope that the vasculiltis is still just affecting my feet like they said last week. I dont want it affecting any more than it already is. I've had my feet up and my doctor acted like that wouldnt help at all and I told her I felt like it did and she just looked at me like "sure whatever you say". She is not a very nice woman at all, and for my last 3 visits has brought in this other doctor from the office she knows I like more than her. When my doctor leaves I always tell the other woman how mad it makes me when she says Im not taking my medicine and she looks at me like I know what you mean.

ritzbit
03-09-2011, 12:16 PM
Im currently sitting in a very small child size bed (lol) with my IV but no meds yet still waitin for them to get up to my room. Hopefully it doesnt take so long today to get done with this.

wolfwhisper
03-09-2011, 12:34 PM
I keep forgetting your several states away. I was going to hop in the car to go visit you ;)
I have sworn to myself to go to appointments with my mom since the doctor seems to listen to her rather than me. Sandy beat me to my original statement about it most likely being mottled (unless they plan to put you on the "Lupus Runway", although it sounds like you're there already). Sorry that I have nothing sufficient to add, but I'm happy that you are actually being taken care of by other doctors rather than just your pcp.

ritzbit
03-09-2011, 12:40 PM
Thank you =) Im hoping that all this makes me feel bettteerrr lol sick of feeling like crap.

GoodDog
03-09-2011, 01:01 PM
My thoughts are with you sweetie. (((ritzbit)))

ritzbit
03-09-2011, 01:11 PM
Thank you =)

tgal
03-09-2011, 02:16 PM
morning ritz,

yuk. so sorry to hear about the IV steroids...i know you and your mom are worried, and i hope everything works out ok. please keep us posted.

i don't have any information about what is happening with your feet....however, Mari certainly provided some great information. thank goodness we have members like her who can search the internet and find this information.

best of luck, and i will be sending you gentle hugs.

LOL Phyllis! Actually I used to have a parrot and they "molt" every year which means they would lose its feather and get new ones. Since they were looking at the bottom of his feet I wondered if it might be the shedding of skin like Roger used to do. Once I had that THEN I searched the internet to find information to paste in here.

SandyR
03-09-2011, 02:23 PM
are the IV meds helping Ritz?

ritzbit
03-09-2011, 02:33 PM
Not yet but she said I probably wouldnt feel it yet today. I feel a little better just from lying around for about 3 days now though lol which is nice. I've been in a bed or a wheelchair so my feet havent been seeing alot of action.

ritzbit
03-09-2011, 07:53 PM
Woke up and I was so uncomfortable. My face is on fire. Nothing is helping. We took temp and blood pressure and they are ok. Doctor called us back about it and they said I will probably be ok unless any of it gets worse and then to call back. Im about to stick my face in a cold bucket of water. =(

mountaindreamer
03-09-2011, 08:24 PM
hey ritz,

hang in there sweetie. it is so good to hear that your mom is being so attentive. i know she is very worried about you, and i am sure that the two of you will work through all of this.

i wish you could see the nice dr. all of the time instead of the mean dr. who doesn't believe you. she is not a good team member....there has to be trust. if you tell her that you are taking your meds, then she should believe you....so sorry that you have to deal with her.

ritzbit
03-09-2011, 08:29 PM
Im glad the other one was on call tonight when we called she was really helpful and made me feel better. I was freaking out because my face was seriously ON FIRE. My mom felt it and took my temp thinking I had to have a fever but I didnt. They thought maybe it was my blood pressure and we just happen to have a monitor at home because my mom has a lot of blood pressure problems. It was normal so she said it could just be a weird reaction to the steroids and to call back if it got worse. Still hot but not nearly as bad. Hope it goes well tomorrow.

mountaindreamer
03-09-2011, 08:32 PM
yo mari,

that is so funny,,,,,it never dawned on me that your knowledge about mottling started with a pet parrot...i once had a pet parrot, but all that i can remember about him is that he did not like girls, and he barked like my little dog....lol

i am always impressed when someone can offer a link to a site where peope can hopefully find answers to their questions...you are very good at these searches, and i am so thankful that you are a part of my "family of the sky."

mountaindreamer
03-09-2011, 08:39 PM
ritz,

hooray for the nice dr. being on call. Are you able to find any relief for your burning face? I have only had a reaction like this once, and that was with Non steroid anti inflammatory (NSAIDS). I had to get several IVs of benedryl and morphene, so I am very careful not to take any NSAIDS. Hopefully they will determine what med caused this reaction.

I hope tomorrow is better for you too...

ritzbit
03-09-2011, 08:46 PM
Thank you me too. The only new thing I've been on is the IV prednisone steroid and the Cellcept for a week. I hope I find some relief tonight but so far I haven't. Just laying down and trying to keep my feet up.

SandyR
03-10-2011, 07:51 AM
Hey Ritz,

How's the face? Still on fire? And the feet?

ritzbit
03-10-2011, 07:57 AM
Face thank god didnt feel hot anymore when I woke up. Still feel all swollen, and Im pretty sure I shouldnt still be feelin like that. I'd like to hear my doctor say now "oh you're obviously not getting the infusions which is why you still feel like crap". If I still dont feel better when I see her tonight I dont know what we'll do from there. My mom is making me pack a bag just in case I have to stay for some reason. I didnt sleep like AT ALL. I couldnt get comfortable at all and even took extra sleeping meds and they didnt help. Woke up at the crack of dawn and couldnt fall back asleep. My hands are all puffy too. This whole thing is just so frustratinggggggg. Hoping that it'll get better as the day goes on.

SandyR
03-10-2011, 08:15 AM
I know you are frustrated. I would be too. But I am glad this event seems to finally be getting your mom and your doctors to actually listen to you. I hope they work something out soon.

ritzbit
03-10-2011, 08:20 AM
ME TOO. I just walked down to my room and back upstairs and feel like I ran a marathon my knees hurt so bad. I feel better when Im just sitting but the second I have to do anything I start to hurt. Which isn't really conducive with living. I cant just sit all the time. RAWR.

SandyR
03-10-2011, 08:54 AM
Just sit for now. Don't worry about next week or year or the rest of your lifetime yet. You still don't even know why you are so swollen and it might not take a week or a year or the rest of your lifetime to have your feet feeling better. This is an excellent excuse for you to do a little extra studying, start the draft on your college essays, watch some movie you haven't had a chance to see, skype with some friends, read a book, take a nap and have your siblings wait on your hand and foot. Just try to not get too stressed and drink your fluids. As silly as that sounds it'll help bring the swelling down.

ritzbit
03-10-2011, 09:15 AM
I had a change of plans. Now on way to doctor instead of infusion. My knees hurt to stand.


On a side note as Im speaking a flower truck just pulled up? Im glad I have people in my life you care about me... =)

tgal
03-10-2011, 09:42 AM
fingers crossed for you!

ritzbit
03-10-2011, 04:48 PM
So anyone ever had extreme pain in their arm seconds after getting an IV? because I did about 3 or 4 hours ago and its still sore. They dont know why they said it made no sense that the bottom of my arm would hurt from it. I have to go back in the morning and if I dont look good enough for them they're keeping me in the hospital all weekend. Not really looking forward to that. Im still just tired and uncomfortable.

magistramarla
03-10-2011, 05:06 PM
Oh Ritz,
I'm so sorry that you are going through so much! That doc really needs to learn to treat you as an adult.
It might be a good thing if you stay in the hospital this weekend. It might give the docs a chance to really figure things out.
Keep us informed, and good luck!
Hugs,
Marla

ritzbit
03-10-2011, 05:09 PM
Im just hoping we get things under control. Im sick of feeling bad from one thing or another. =(

GoodDog
03-10-2011, 07:16 PM
I'm glad you're able to come here and talk all of it through. We're all here for you, darlin'. As others have said, don't judge life by what you're going through right now. It won't always be like this and you'll be listened to before it has to get this bad again.

wolfwhisper
03-10-2011, 08:15 PM
So anyone ever had extreme pain in their arm seconds after getting an IV? because I did about 3 or 4 hours ago and its still sore. They dont know why they said it made no sense that the bottom of my arm would hurt from it. I have to go back in the morning and if I dont look good enough for them they're keeping me in the hospital all weekend. Not really looking forward to that. Im still just tired and uncomfortable.

Maybe the vein collapsed? I know that one of my friends veins collapsed while donating blood (not really the same as IV) and I think she said the same thing. I don't know why it's lingering though. Can't say much about personal experience though because most of my flares are in my lower arm, and everytime I get a needle in it, I flare. Talk to the doctor about that too. If she says "you didn't take the IV", ask her if she wants a front row seat next time.

ritzbit
03-10-2011, 08:45 PM
She expected me to get puffy and fat or something and I guess I was lucky because I didnt. Woke up with my feet swollen again =( my arm doesnt hurt as bad but I cant straighten it? weird. go back at 11 tomorrow morning.

mountaindreamer
03-10-2011, 08:58 PM
hi ritz,

just reading through your latest reports. you are definitely going through a terrible time right now, and i am so sorry. I do agree with marla, maybe it would be better if you stay in the hospital this weekend. they can keep an eye on things, and mayb someone can start coming up with some answers. Just take a bunck of comfy pillows and your own blanket with you, and let people wait on you for a couple of days.

hope tomorrow is a better day.

ritzbit
03-10-2011, 09:04 PM
I already have a "just in case bag" packed in the car in case I need to stay. either way I dont plan to move much this weekend. both my doctirs are in call this weekend which is part of why they thought staying might be a good idea. I'll know by noon.

mountaindreamer
03-10-2011, 09:10 PM
take extra pillows so that you can be really comfortable....i have yet to find a hospital pillow that is comfortabe...i think they are all "throw aways".

you sound relaxed this evening...hopefully you will have some answers and treatments very soon.

SandyR
03-11-2011, 07:27 AM
Hi Ritz! Are you at the hospital yet? Do you feel any better today?

lovehubby
03-11-2011, 07:34 AM
I thank Tgal is right about that word. Ask the nurse what it saids and then ask your Dr. to tell you what it means take care get better soon

ritzbit
03-11-2011, 08:09 AM
I'll be leaving in about an hour. I have a bag packed just in case they make me stay. My feet are actually looking and feeling a little better but the past few days my knees have been killing me. She said that could be from the steroids. I woke up in the middle of the night sweating but it wasn't the same intense heat that I had in my face the other day. I hope she thinks I look good enough to get to just stay home, everyone keeps fussing over me. My step dad said he'll grill out cheese burgers if Im home this weekend (it just snowed yesterday lol). I dont feel like I've slept in a week even though I've been laying down all the time and have been taking an extra sleeping pill to try to knock me out. Im looking forward to attempting to get some good rest no matter where Im at the next few days.

magistramarla
03-11-2011, 11:49 AM
Hey Ritz,
I'm thinking about you. Good luck and keep us informed.
Lots of Hugs,
Marla

ritzbit
03-11-2011, 01:09 PM
She said my blood work from after the second infusion looks better and so she sent me home =) she said she thinks I'll continue to feel better over the weekend. She is switching me from prednisone to medrol because she said it will be a little easier on my body. She seemed very hopeful that I would be walking on Monday and would be able to go to school. She said to just take it easy this weekend and call her on Monday to let her know how Im feeling and then I have an appointment on Thursday. She said as long as things continue looking better and with me feeling a little better she thinks that everything we've done so far will be enough to get me back to normal. I sure hope she's right =) she said if Im still having a hard time walking on Monday and people at school give me any problems she would have someone call up there about it. I'm hopeful after seeing all my blood work coming back slightly improved =) The numbers are still high but have gone down. Glad to just be home =)

SandyR
03-11-2011, 01:36 PM
great news! hooray!

ritzbit
03-11-2011, 01:43 PM
Im pretty happy about it =) as long as everything goes well over the weekend I dont see how things could get worse than they have been for 3 weeks. On a side note my doctor also seemed very confident that the vasculitis wasn't affecting anything huge like my kidneys or brain. Which made me feel ALOT better. I hope the weekend goes smoothly so I can get back to life next week. Im ready to feel like I can function again lol

ritzbit
03-12-2011, 11:51 AM
So I had high hopes of feeling better yesterday and this morning. However, I still feel like crap. My mom thinks I should have stayed at the hospital. I have a bunch of little white spots popping up on my legs and feet. At first my mom noticed them and asked if I have any scars on my feet, but thats not what they are. They dont hurt or anything though but theres a handful of them. They are white and shiny looking? Anyone know what that might be? And I was wondering what it should feel like to have fluid build up in your knees versus something else. Because my doctor said my knee pain is more than likely fluid build up from the steroids, but this pain just isn't what I would imagin fluid build up would feel like. It feels like something is ripping in my knees, and even laying down doesnt seem to make it feel any better. I am frustrated and tired. I took more of my sleeping pills last night, as instructed, and still feel like I didnt sleep well at all. On the bright side, my original problem of insane swelling in my feet has gotten better.

debbie-b
03-12-2011, 11:59 AM
Hi Ritz,

Wow, you are really going through some crap right now.
All I can say to you is, try and hang in there, it has to get better soon.
Do you feel that you are in good hands with your doctor?
Wishing you the best.

Debbie

ritzbit
03-12-2011, 12:06 PM
For once I think she's listening to me 100% and I feel like I've gotten much better with everything she's been doing but I still feel like crap. Maybe I'm expecting too much too soon? She made it sound like my knees would be a lot better though and they really aren't. The frustrating part about that is that my knees weren't even bothering me until I had all the steroid treatments. She's on call this weekend, along with my other rheumy since I am lucky and have 2 working with me right now, so my mom is going to call and talk to them in a few hours if things still aren't seeming better. Im not waiting til Monday if I feel like crap to find out I should have called today. Im just really discouraged right now and feel like things aren't going to get better =(

lovehubby
03-12-2011, 02:10 PM
You hang in there it will get better it always does and keep up positive thinking it gets you were you need to be.

ritzbit
03-12-2011, 04:06 PM
I apparently have white hives? I feel like Im like in a dream because I feel so groggy and out of it I dont feel all the way there. My mom keeps checking me like every half hour to hour to see what I look like. I feel like crap.

serand4
03-12-2011, 08:10 PM
Oh these Rheums!!! I'm so sorry about what you're going through, however, right now I wish I had a central line and could come and go from the hospital instead of taking the 50mg of Prednisone they have me on now. For some reason the IV steriods don't swell my body up like the pred. However, without the pred, I can barely walk from weakness and the pain is just indescribable. I no longer even see a Rheum as I wait to see if I get admitted to the local "dream team" hospital so I'm stuck with the pred as my only line of defense. Two of the Rheum's I've seen said I don't have Lupus because my ANA is low. Really?! Really?!! My pcp thinks I do. My nurses think I do. The ER team at the hospital I always end up in think I do. Everyday is a new adventure in symptoms. My joints hurt so bad today I'm really close to taking a sleeping pill (one, not lots) and hopefully sleeping through this stage. There has got to be a better way to research and handle this disease. The frustration we go through just to find any relief has to irritate the condition. And while I don't know if my feet are moddled, they are one of the absolute worst pain centers in my body. And yes, they show all the signs of Reynauds -- I gave a brief seminar for the nurses during my last hospital stay. Honey, you have my heart and my prayers. The fact that a doctor dare speak so flippently to you just cheeses me off. I filled a pain script today and you would thought I was buying meth. I just reminded myself that I don't owe anyone an explanation, let alone a pharmacy tech at the local grocery!

Take care and tell your doctors that I have ALL the swelling you don't! Add the butterfly rash and I look like some crazed walking balloon! God bless and hang in there!

ritzbit
03-12-2011, 08:52 PM
Right now it really looks like I have 2 knees. Like you can tell where my knee cap is, then there is this HUGE lump under. Its like that on both legs. My face is getting puffy now, yay for delayed reactions. I look like Im on drugs or something because I cant walk straight, look confused, and keep putting my arms out to keep from falling. I am dizzy and my head feels heavy. If this is supposed to be me getting better....
I feel so worn down. =( nothing Im doing is helping. I thought taking a bath sounded like a good idea since I feel gross beyond belief and thought it would be easier on my knees than standing in the shower. WRONG. I couldn't get myself out of the bath because I couldnt stand up. I've just had a terrible day and keep hearing "well give it time" "the doctor said it'd get better" "the doctor said the swelling was from the meds" I KNOW. Im sick of hearing all those things like they change anything, because they dont. I dont care what the doctor said because my legs aren't getting better yet and they still hurt and Im still tired and in pain. I have been really mean unintentionally all day. =( I really hope I sleep tonight...

tgal
03-12-2011, 09:53 PM
Oh Ritz I am so sorry you are going through all this! I know how excited you were about stepping down off the steroids so that you didn't have all the side effects. I really do hope that the doctor is right and that it will get better soon. Until then we are always here (((hugs)))

ritzbit
03-12-2011, 10:03 PM
I hope that tomorrow is better. If I could get any good sleep I really feel like it would help but my doctor wont let me take anymore of my sleeping meds than Im on right now =( if its not better by Monday Im going to miss school AGAIN. We just started a new term last Monday and I havent been to school since Tuesday, so Im already way behind. And when they let me not take my exams I was supposed to make them up on Wednesday, which I didnt because I wasn't at school. So I got my report card today and they put in ZEROS for my finals and my grades are terrible. I better still be able to take those when I get back or I'll be SO MAD. My day has just been getting worse and worse and now my legs feel like they are on fire AGAIN. =(

SandyR
03-13-2011, 07:59 AM
Wow! you have been through a lot this weekend. Let me say that as someone who has taught - don't worry about the grade right now. They just had to report something. When you take your test they will adjust your school record. When the colleges you apply to get your official student record it will look right.
How's the swelling today? Are you still so swollen?

ritzbit
03-13-2011, 09:23 AM
My feet are getting better. But when I walk at all they get swollen again! And my knees still hurt. I feel like if it was all really getting better then I would be able to get up and walk around without them swelling back up. I cant just sit here for the rest of my life. I slept somewhat better last night but still woke up at the crack of dawn and sort of fell back asleep for a little while.

mountaindreamer
03-13-2011, 09:32 AM
hi ritz,

did your dr. give you a medrol injection or pills? when we really have to get a flare under control, my dr. gives me a medrol injection (insurance usually won't pay for it, and it costs me $90.00 but it is worth it.) when i get the shot, i usually feel better within a couple of days. it is not immediate, but it is quicker than with the pills.

wish you were feeling better this afternoon.

ritzbit
03-13-2011, 09:46 AM
I was getting it through an IV for 3 days then when I went home I started taking the medrol pills instead of prednisone. She acted like I would be feeling better by now =( I think Im going to go back in tomorrow to see her if my knees dont get better today because she said if they didnt we would need to get an xray of them to check on whats going on. I dont want to wait for my appointment on Thursday if they're still hurting bad tomorrow because thats just going to be 3 days of my week wasted at home again. Everything is looking a little better since I got up today, but I always look good in the morning and then it gets bad again as the day goes on so its too soon to know if its really getting better or not. Guess I'll have to wait and see.

ritzbit
03-13-2011, 07:05 PM
Legs are on fire AGAIN. Im getting tired of playing this game with my legs. They weren't great today but they were somewhat better then I got up for dinner, walked to one end of the house, bathroom to wash my hands, and now they are on fire and swollen and popping and HURT. Its ridiculous how drastically they change within minutes of me standing up or walking at all. My mom and boyfriend had their hands on my knees and even they can feel something moving in a weird way everytime I even twitch! It feels like something is ripping =( Im getting myself up early tomorrow and calling the doctor to ask what to do about them. I dont know if Im expecting things to be better so soon or what but I need something to relieve this at least a little bit because I cant do ANYTHING. I've been in the same chair for the better half of the past few days..

mountaindreamer
03-13-2011, 07:16 PM
so glad you are calling the dr. in the morning....i know everyone is worried, and it is time for your dr. to figure this thing out....hope you get some answers really soon.

i just can't imagine how frustrated you must be. you are doing an exceptional job of keeping your cool.

ritzbit
03-13-2011, 07:24 PM
I know she said we'll need xrays if they dont get better so I dont know if she means tomorrow I'd need to get them or if she wants to keep my appointment for Thursday or if she wants to see me tomorrow. I am just sick of all of this. Having a few days to relax and take it easy should have been nice and gotten me back to normal in my mind but I've only gotten a little bit better, and the stuff they gave me to get better is just making the problem worse. I hope she does something about this tomorrow because Im not going to sit here for another week waiting to walk.

GoodDog
03-13-2011, 07:40 PM
mountaindreamer is right...we're all worried about you. I check in throughout the day to see how you're doing and I'm sure many others do too.

If you can, try to stay calm when you talk to your doctor tomorrow. They don't like to have their shortcomings pointed out to them, especially in a confrontational way no matter how much you want to. Of course that's easier said than done when you have had so many problems lately. Try to get your Mother to fight that battle if you can - bad cop/good cop kinda' thing. Hopefully your Mom has learned and will continue to step up for you. (((ritzbit)))

steve.b
03-14-2011, 05:17 AM
hi ritz,
thinking of you.

SandyR
03-14-2011, 07:02 AM
did you call the dr? Did they check you for vasculitis.

ritzbit
03-14-2011, 08:17 AM
I do have vasculitis thats what started this whole mess. I just got a call to come back in today at 1:15 to get looked at yet again. I keep getting like, hot flashes. I woke up twice in the middle of the night sweating profusely. My face and knees still keep randomly getting really hot and red. I can walk better today but its still not all the way there. And I know that more than likely it'll get worse as the day goes on because every morning Im pretty optimistic and they get sore and swollen the longer Im up. Maybe today will be different thought.

SandyR
03-14-2011, 08:55 AM
*head smack* DUH! I knew that. really I did. I just fog-got.

ritzbit
03-14-2011, 04:08 PM
So I went back to the doctors today and she thinks all my problems are a result of the steroid treatments. She said that since I didnt get better as quick as she thought its just going to take some work to get back to normal. I got xrays of my knees and the bone looked alright, which is good. She also set up a physical therapy appointment today that I went to and it made me mad that the simplest of things like lifting my leg or walking from a counter to my wheelchair was hard. I have felt like I was running a marathon all day. My pulse was 163 today; its been racing for the past two days. She said she thinks once Im sleeping better again and getting back on my feet with less trouble it'll go down and if not we'll look more at it then. I have to call her with updates the next few days and have another appointment for Thursday.

steve.b
03-14-2011, 06:44 PM
(((hugs)))

kim,l
03-14-2011, 09:23 PM
hope you feel better soon sorry i missed your post hugs kim l

ritzbit
03-15-2011, 04:27 PM
I think Im going to try school tomorrow =) I figure I might as well try and I can always have someone pick me up throughout the day if I can't handle it all day. I'm glad to be feeling a little better. These exercises hurt so much! I've done them several times today. I can't believe how hard it is just to lift my legs or anything like that. These exercises the physical therapist gave me seem so easy but to do them I work up a sweat! My doctor called and said my blood work from yesterday shows further improvement =) glad to be back on the way to "normal" lol

lovehubby
03-15-2011, 07:56 PM
Just checking in to see how you ae feeling today. I hope it is alot better. take care big hugs fom michele

ritzbit
03-15-2011, 08:05 PM
I'm up and walking =) just not far and not fast. Still hobbling around a bit but I'm up =) Still swollen but I think that the exercises the physical therapist gave me are helping. Going to brave school tomorrow and see how that goes. I'm nervous, I look a mess and I know there's probably going to be a million questions from people who don't already know whats been going on. I hope I dont start having a hot flash in the middle of class, that'd be embarrassing....We'll see how it goes. My aunt said she'd come get me if I cant make it through the day, but I hope I can.

mountaindreamer
03-16-2011, 05:57 AM
hi ritz,

wishing you a great day at school today....take it easy, and let your friends help whenever you need it.

steve.b
03-16-2011, 06:04 AM
it is reading the posts of people like you, that make this a family.

hope all goes well at school.

SandyR
03-16-2011, 07:43 AM
I hope you made it through the school day. Make sure to rest and relax when you get home. You're body's going to need it.

ritzbit
03-16-2011, 12:44 PM
Today didn't go well =( I woke up this morning and hurt really bad but thought it was probably from all those new exercises I took a Naproxen and laid back down for awhile and felt better so I decided to be a big girl and go to school still because the pill seemed to be helping. Made it around my first few periods slowly but surely then by the end of the day my feet looked just as bad as they did before all these treatments and new medicines! I am in so much pain right now and feel soo discouraged =( I came home and for the first time since all of this started had a nice "self pity" cry. I dont know what I'm supposed to do if I cant be on my feet =( I keep trying to get ahold of my doctor and no one will pick up! Im so frustrated, wouldn't you think it'd be somewhat better by now...?

tgal
03-16-2011, 12:59 PM
Ritz I am sorry about your feet but we saw this coming. You have to let things get better completely or this is going to keep happening. My favorite quote is "if you do what you always do you will get what you always got". I know you are discouraged and it feels like you are falling apart but PLEASE let yourself get completely better before pushing yourself and sending your health to what it was before.

I understand your frustration. I really do. I lost my job because I couldn't get well fast enough. I have cried just like you are right now so I do understand the pain you are feeling. I wish I could put my arms around you right now and give you a shoulder to cry on. All I can say is that this will pass. It will be even longer unless you let things get completely better before pushing youself.

You do need to get the doctor on the phone. What he is doing isn't working so we need to do something else! Love to you my friend

ritzbit
03-16-2011, 01:07 PM
My doctor acted like I'd be good to go back to school. I thought that getting back on my feet would help them a little. She thought I'd be back on Monday...I cant afford to keep missing 3 AP classes =( I already have tons of work I've barely touched..My mom said if this woman doesnt get this swelling under control next week we're going to see someone else because even though I've still been having a lot of complaints she keeps saying to try this or that or wait, and none of it is helping. I can seriously barely stand right now.... =( I dont know what to do. I just called like 5 times and no one is picking up. I know if I leave a message no one will get back to me today and they need to. I have already taken all the pain meds I can today, with no relief. I need something to helppp. =(

tgal
03-16-2011, 01:25 PM
Oh I am so sorry! I am with your mom on this but I don't know if I would wait until next week. If this doctor isn't helping or answering then get a new one! I am here if you need a place to vent. Don't forget that we love you

ritzbit
03-16-2011, 01:34 PM
I dont know what I would have done this week without you guys. I have been trying to keep up this "oh its all going to be ok, its not a big deal" kinda thing with all my family but today really just broke me. Everyone could tell I was sick. And kept asking what was wrong. And I had to explain so many times. And act like it was ok. Because I dont like people fussing over me and making a big deal of it. But Im really miserable. I've been crying for like an hour. I keep thinking I should be feeling better. If all my blood work she's looking at says I am getting better, why do I still feel horrible? My feet hurt so bad and I dont even know what to do for them right now. They feel so big and heavy and even having them up isn't making them feel better. I have called my doctor every 5 min for almost an hour an NO ONE WILL PICK UP. Finally gave up and left a message, and they better get back to me today or Im going to be very mad. I've been doing everything I was told to do for 2 weeks now, almost 3, and still everything is just getting worse. Everytime I think its getting better everything goes back down hill....

tgal
03-16-2011, 01:49 PM
Jus reminding you that you are loved. We are always here

ritzbit
03-16-2011, 06:31 PM
I finally got ahold of one of my rheumys and she called in a script for some pain medicine that my mom just picked up. She told me to come back in tomorrow. I hope it kicks in soon I've been miserable for the past few hours =(

mountaindreamer
03-16-2011, 09:00 PM
hi ritz,

so glad that you got some new meds. i hope you are sleeping now, and that you have a very peaceful rest.

i have to agree with your mom and especially mari, things need to change quickly, or your dr. needs to call in for help in finding the answers for you, or you need to search for another dr.

it is time for them to get you some relief, and i hope that starts tomorrow.

sweetie, i too wish i could be there just to put my arms around you and let you cry on my shoulder....i think you could use more than one right now.

wishing you sweet dreams tonight.

ritzbit
03-16-2011, 09:09 PM
Thank you guys. My mom called AGAIN (she worrys so much) because my stomach is HUGE today and she was freakin out thinking organs were swelling or something even though I told her nothing hurt. One of my rheumys was on call and she thinks tomorrow we need to look at what Im taking. She thinks that maybe Im not handling the medrol well, even though they put me on it because it works better for most people? So maybe I'll just switch back to prednisone which I really had no problem with to begin with in my opinion but it wasn't really dont anything for me. I just hope they figure it out tomorrow, my little brothers birthday is this weekend and we have a lot of family plans and a party for him. I dont want to have to miss out on all of it =( My feet are still huge, and my knees. The pain medicine did help some. Hopefully I sleep well tonight.

mountaindreamer
03-16-2011, 09:17 PM
hi ritz,

i am sure that your mom is very worried about you. i am also sure that it makes it easier for you to rest knowing that she is onboard and watching over you...i hope tomorrow brings some answers.

again, sweet dreams.

ritzbit
03-17-2011, 08:04 AM
I have found that its not just walking that makes my legs and feet swell. Letting them hang down at all makes them huge. So I think just from SITTING yesterday at school was enough to make them swell back up. I am going to sit up instead of lay down until I go to the doctor later at 2 so she will see truly how bad they look. My feet are also all purple today from my Raynauds; it hurts to wear socks and they are freezing! I cant tell what is purple from the Raynauds and all the other strange discoloration I've been having. My whole pinky toe and up the side of my foot, on both feet, is a very deep purple right now that looks different than my usual Raynauds purple. More like a bruise. The top of my foot looked like that yesterday too but it went away after like 20 min with my feet up.

SandyR
03-17-2011, 11:27 AM
Sorry I missed what's been happening with you the last two days. I'm beginning to suffer from the ankle swelling again too and know that even sitting at a desk almost all day at work I still have to put my feet up when I get home because anything below heart level and they swell swell swell like water balloons. I know you want them to be swollen when you go to the doctor but when you go to bed try putting some pillows under your legs from the knees down and sleeping with the feet elevated like that. It's difficult at first if you're a turner like me but it really helps. You also need to loosen the flat sheet from the bottom of the bed to have more leg room. If you're like me you will have too much pressure from the sheets if you don't do that. I know it sounds cliche right now - but drink lots and lots and lots of water. And when you go to the dr ask her about your potassium levels - make sure you have a recent reading. It may be a long shot but when my ankles were like yours and I was at the ER all the labs looked "normal" except the potassium was too low. They gave me a giant pill and an order to eat a banana a day and that seemed to help.

ritzbit
03-17-2011, 07:21 PM
Today was a little crazy. Left for my appointment around 1:30 because it was at 2:15. Waited over an hour to see my doctor. Then she said this is all still from the steroids. So she's cutting them in half and taking away one of my 2 doses of medrol a day. So now I'll just be taking 16mg in the morning. She said in the next few days that will help with the swelling Im still having really bad. She also said that should help me with my sleep, considering Im basically getting 4-5 hours of sleep a night lately. Then after addressing the swelling she FINALLY acted like maybe my heart rate (which was 160 again today) wasn't normal. So she's finding someone who can look at my heart outside of Children's because she "wants to make sure she isn't missing anything". Good to know she's more concerned about covering her own ass. She also acknowledged the fact that we've been saying for months that Im always short of breath. So because of all this I had to get a chest CT to check out my lungs and heart, mainly blood clots. Thankfully they did not find anything. However, everyone before I did it was saying they weren't expecting to find anything so I could leave when I was done and they'd call us right away if anything was actually wrong. So then when they were done with it they tell me the radiologist wants me to stay and wait for the results while they go talk to my doctor. So I sit there for at least an hour freaking out and they finally take me back and I only met with a nurse who basically said "they told me to take your IV out and that you dont have any blood clots. Go home". And she kind of looked at us like sorry they wouldnt tell me any more than that. So Im calling back up for the rest of the results tomorrow if I dont get a call in the morning. So aggravated. I dont know why they couldnt just tell me while I was there, because I feel like there must have been something but it wasn't bad enough to admit me so they weren't worrying about it. They obviously saw something if they were talking to my rheumy and making me wait around instead of going home. What else could be wrong that wasn't serious enough to have to admit me? Sooo much on my mind.

mountaindreamer
03-17-2011, 07:39 PM
i don't know Ritz, sure sounds like they needed to address something that the radiologist saw. But, maybe they just wanted to be extra attentive to your case, and they did not want to make you go through the hassle of going home and then possibly having to come back and get the IV reinserted. Don't know what their reason was, but they certainly should have talked with you and explained their reason.

Remember, you are the leader of your medical team. you are an equal partner, and you need to be told of any concerns/questions.

mountaindreamer
03-17-2011, 07:56 PM
ritz and sandy,

i remember when i was having a lot of trouble with my ankles and feet, i found something that really helped me sleep at night.

you can go to the medical supply store, and get a bracket that fits under your sheets and around your mattress. It holds the sheets up over your feet, so that they are not touching....really helps keep the feet comfortable and warm during the night. not sure what it is called, but just tell the store clerk that you need the bracket that holds the sheets up off of your feet....they will know what you are talking about.


they are not expensive, i think mine was around 35.00, and well worth the price.

ritzbit
03-17-2011, 07:58 PM
I just feel like they must have seen something or they wouldn't have been calling my rheumy. I dont know why they wouldnt have just told me though. Im just so tired and aggravated and if its not from one thing lately its another. Too much on my mind.

And my doctor told me to get something to wear on my legs called "TED stockings". We're going to get them this weekend.

magistramarla
03-17-2011, 08:34 PM
Ritz,
I'll be thinking of you, sweetie. I hope that you get a call tomorrow to explain all of that. The radiology tech is not supposed to talk to the patient about findings. It's up to your doc to give you the info. I hope that they don't wait forever to let you know.
I think that those stockings are compression stockings that are supposed to help with circulation. I don't wear them, but I've found that my knee-hi nylons even help some.
Hugs,
Marla

lovehubby
03-17-2011, 10:45 PM
Hang in there girl keep smiling and have happy thoughts. Hugs from michele

Hunniebun
03-17-2011, 10:55 PM
Haven't been around for a while because I am moving in less than 2 weeks so I have been busy packing. Read all the posts and I hope you get better soon ritz! I always have swelling in my hands and a little bit in my feet and I'm STILL waiting on seeing my new rheum so UGH, it sucks.

Have you tried sleeping on your back with a pillow under your knees at night? I'm not sure if that will help or be of any comfort for you, but it's what I do each night because my left hip is so bad it hurts to even lay on something soft so I have to be arched a little to be able to sleep with at least a little comfort. The pain in the hip makes me swell and then sends it down and swells my knee and then sends it farther down to swell my feet. It's wonderful isn't it? Haha...I swear my veins pulsate in my hands too, that also hurts, and then there's the weirding bruising on my legs, its never ending.

Wishing you the best!

ritzbit
03-18-2011, 04:54 AM
I've been sleeping with two fluffy pillows under my feet trying to keep them up but I dont know how much its actually helping. I woke up sweating and in alot of pain around 3 this morning and tried to quietly yell for my mom to come help me get my pain meds but I live downstairs and on the other side of the house. Finally got up and went upstairs to get some medicine then fell back asleep on the couch only to wake up sweating and in pain 3 hours later. And guess what is so weird about the pain? IT GOES AWAY WHEN I STAND UP. Its like intense pain in my feet and nowhere else, and when I stand it feels better. Thats completely backwards and doesnt make any sense. But I paced around our living room til my knees couldnt take it anymore to make my feet stop hurting. I plan on calling for my results if no one has called me by 12 because thats when were leaving for the day to take my little brother out for his birthday ( he's 5! =) ) He is so excited to go to Chuckie Cheese and Im going with everyone but Im just going to pick somewhere to sit and stay there. Im afraid I'll get sick so Im planning on avoiding touching anything except my own food.lol

SandyR
03-18-2011, 06:57 AM
I think you said they did the scans at the hospital? Call the hospital radiology department and tell them you were there yesterday for tests and the nurse discharged you but the doctor hasn't told you the results of your test yet. Ask for a copy of the radiology report. It will tell you exactly what they found. They only thing I can think with them calling the rheumy after the chest xray is what I have - Sarcoidosis- but if that was what you had or they suspected then the regular doc or the rheumy should have sent you to a pulmonologist or cardiologist. Also, since the doctor called the rheumy, the rheumy probably already has a copy of this report so you can also call them to see what's the deal.

ritzbit
03-18-2011, 07:10 AM
Thats what Im planning to do if no one calls me. Im going to call my rheumy and see what exactly they were talking about and what the test showed. I know that when I did it the first time they came in and said we need to flip you on your stomach because there was some "gunk" on the other one. Im sure that could mean anything lol but it made me think they might have seen something weird. I dont know Im probably worrying too much I just wish they would have just told me last night so that I wouldnt have to still be worrying about it now. My rheumy told me last night before the chest CT that she was trying to find a good adult cardiologist for me to go see about the tachycardia because she said that the doctors at Childrens dont deal with that as often. Sooo maybe now from whatever they saw last night she'll finally be a little faster about that. She finally actually put those things in my records, "tachycardia, dyspnea, myositis, vasculitis". We have talked about these things many times but the actual names of these problems never seem to make it into my paper work so Im glad they are finally there and recorded.

SandyR
03-18-2011, 11:14 AM
That's a giant step forward. I'm glad he finally wrote the names in your notes. Now when a new doctor sees you it will be there in black and white documentation.

ritzbit
03-18-2011, 02:10 PM
Got the test results back from the chest CT; everything looks good. So she is going to ask around and see if they might have some thoughts. She's apparently going to some conference next week with radiologists (I think) and is going to ask them what they think of my scan or something along those lines. I also think she is trying to find a pulmonologist for me to see about it. So at least she isn't brushing it off like I felt she was before.

ritzbit
03-18-2011, 05:12 PM
What do you feel like when you start going off your steroids? Because I have felt weird the past few hours and Im wondering if it could be because I didnt take my second dose today? I know most people usually taper off but my doctor felt like cutting my dose in half was needed because of how my body was responding to the steroids with this excessive swelling below my knees. What do you feel like when going off steroids?

GoodDog
03-18-2011, 07:12 PM
What dosage are you on? I've always heard we have to slowly taper down and NEVER reduce it by much all at once. Apparently it can cause some major problems.

ritzbit
03-18-2011, 07:20 PM
Thats what my doctor said too but she said we were going to try to cut it in half. I was on 16mg twice a day of medrol. I took away the afternoon dose so now Im just on 16mg in the morning.

Colleenc
03-18-2011, 07:58 PM
Be careful when tapering the steroids!!! I got into major problems back in Jan when trying to do this to quickly. I ended up in ICU (mostly because it took them meaning rural canadian docs to long to figure out what was going on which made it worse) on IV steroids for 4 weeks and I'm now on 40mg pred and just beginning to taper. Docs think I have an adrenal problem that may prevent me from ever being able to get totally off a steroid. Make sure if you start feeling worse or get any new symptoms you call your doc immediately!!

Take Care
Colleen

ritzbit
03-18-2011, 08:05 PM
I've been having more problems then usual with my heart racing. Even when Im laying down I feel like it is. But my mom checked my blood pressure on her monitor and my blood pressure and heart rate were what they usually are. I have also felt shaky all day. Im supposed to go back to the doctor on Tuesday to check blood work again I believe.

magistramarla
03-18-2011, 08:23 PM
Ritz,
I'm so glad that your doc is finally paying attention to you.
Be very careful with those steroids. I don't have any experience with them, since I can't take them at all, but I've seen lots of people on here talking about how important tapering is. If you don't feel right, don't hesitate to call your doc this weekend.
Hugs,
Marla

ritzbit
03-19-2011, 07:43 AM
I feel a little better this morning. I just felt really weird yesterday. Maybe it helps that I actually slept last night :D It was probably the best sleep I've gotten in 2 weeks. SO HAPPY lol I've been so tired and out of it all week. I just remembered this morning my doctor said something about checking my thyroid this coming Tuesday at my appointment. Whats the thyroid do that she would be checking that because of my heart rate? I completely forgot she even said that until 15 min ago. Just curious if anyone knew.

serand4
03-19-2011, 06:33 PM
I do the exact same night time routine with the pillows and loose sheets. I don't think I could sleep if they pressed on my feet. I also eat one or two bananas a day and it has definitely cut down on the calve/foot cramps. I don't know if that will help, but it's worth a try.

SandyR
03-21-2011, 08:38 AM
I just remembered this morning my doctor said something about checking my thyroid this coming Tuesday at my appointment. Whats the thyroid do that she would be checking that because of my heart rate? I completely forgot she even said that until 15 min ago. Just curious if anyone knew.

The thyroid is like the bodies hormonal thermostat. It controls metabolism, temperatures, even organ function. Here's a good article showing the thyroid/heart link.
http://heartdisease.about.com/od/lesscommonheartproblems/a/thyroidheart.htm