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View Full Version : Life of a Lupie...venting



professor825
03-30-2012, 01:25 AM
Hey guys,

I hope all of you are making it through okay. I've been in a flare for a while and I wanted to reach out to you guys and let you know how I've been.

First off, for the last few months I have been developing these lumps/knots on my head. They aren't bumps but lumps/ knots. They first started appearing in the areas I lost hair from either lupus or chemo. But now they are all over. My Rheumy and derm docs think that they are manifestations of the discoid lupus. So I got steroid shots in some of them which did absolutely nothing. On a follow up with my Dermatologist, her and her attending doc looked at them again. There were some that looked like the discoid ones but then there were some that apparently the attending had "never seen anything like it" (her exact words). Soon, they decided to biopsy and see if I have developed an infection b/c im so immuno suppressed b/c of chemo and steroids? I will get those results next Thursday. I'm hoping it's all good. I don't really want an infection, but if not then what the hell is happening to me? Any thoughts??

Next, I've been having terrible mood swings. My poor girlfriend has to deal with my foolishness. I wish I knew a way to control hem

Next up: Brain fog. I have been more forgetful with things I should know and remember. Its extremely annoying and it's not the best time for this, as I am in school and cannot afford to just forget things. i.e. before spring break, I forgot I had a paper to write and showed up to class dumbfounded when everyone turned theirs in and I had nothing to show. People forget things all the time, but I've always had a very good memory, so this is upsetting. I "forgot" the name of my brother's other nationality when discussing cultures one day, which doesn't seem like much, but it I really could not think of it. It just upsets me because I'm forgetting things I KNOW. Its happening a frequently with things that are common and easy. I'm studying Chem and Bio which are based on memorization and knowing different processes. How am I to do well if I cant retain info or remember what I learned years ago? Sorry, for the rant. I don't expect you to know the answer to that. Just frustrated. *Since I've been noticing this happen more often, I've been writing things down more often. Thank goodness for sticky notes!*I'm also misplacing things and not being able to finish thoughts because I'm forgetting what I was going to say. I shared all of this in an email with my doc over a week ago and she hasn't responded. That is frustrating all in itself. She is very busy and sooooo nice so I don't want to feel ignored, but I do a little. I have an appt. with her Tuesday so we can discuss it then.

To top it all off, I've developed a sinus infection that gave me dental problems and my face HURRRRRRTSSS! I've never had a sinus infection so I don't even know how it's supposed to feel. I just know the lupus is making things more magnified. I was in the ER for 7 hours on Wednesday. Got some antibiotics and was told to use my tramadol for pain. Which does not work. The pain is so stupid! The tramadol makes me nauseous and my nausea makes me sleepy. That doesn't help much when it comes to work or school. I overslept and missed school several times based on this combination. I took some Tylenol 3's I've had for a while and that helped with the pain for an hour and them it returned. But I don't want to keep popping those. I'm nauseous now b/c I took a tramadol before bed. Ooh and I went to sleep at 2:15 am and was back up at 3:42 am. I don't sleep throught the night and can't take the ambien because I have to be up again @ 6am to get ready for my day. Frustrating!!!

Other than these things, for the most part I am physically doing*OK. Like all lupies I have good and bad days. I've been trying to test my limits. That annoying flank pain showed up again this week which was upsetting because it had been a while. Overall though, I won't complain. I KNOW there are people going through far worse issues than these I've listed. And its because of this that I push through my pain. I pay for it later, but I don't wan't to be "that person" that goes to the hospital and bothers the doctors over every pain or issue, you know? I am pretty much at my wits end with all of this and I don't know how to proceed. My Rheumy doesn't know why I'm flaring. All my levels are good and the meds are helping with everything else. We discussed switching but I'm scared to do that and risk feeling worse or my counts declining. Any thoughts??

I'm only venting and like I said I know people have it way worse than I do right now and I feel terrible for complaining. I just want to get you guys' views on my case. Again I hope everyone is doing okay. Thanks for hearing me whine. Have a great day all!!

Carli

steve.b
03-30-2012, 02:14 AM
hi carli,
sorry you are having a rough time.
thanks for the update.

debbie-b
03-30-2012, 03:54 AM
I hope this rough spot is over soon.
Let us know, what the tests reveal.

Debbie

magistramarla
03-30-2012, 10:50 AM
Hi Carli,
It's good to see you here again, but I'm sorry that you are having such a bad flare.
We've all been there with the failing memory, the pain, the fatigue and the weird sleep patterns. There have been a lot of threads about them in the past, and I think that I've seen you on a few of them.
Be sure to write down all of your symptoms and questions for your doc, and don't forget to take them with you!
I'm glad that your dermatologist is on top of your skin issues. Let us know what she finds out.
Hugs,
Marla

Saysusie
03-30-2012, 11:05 AM
Hi Carli;
Good to hear from you again, but I am so sorry that you are having so many problems right now. It sounds as if your doctors are, at least, being pro-active. Please keep us updated on your test results and what you and your doctors decide to do as a treatment regimen.

Peace and Blessings
Namaste
Saysusie

Shine
03-30-2012, 05:08 PM
Carli, it sounds like you're having such a tough time of it, and it must be so hard to study and be ill like this. Have you spoken to your tutors and let them know about your struggles? They may offer extra assistance or time to do things. From your post I can see that you're probably the kind of person who wouldn't want to ask for help...but even so, it's best that they know whats going on otherwise they make think there's another issue.


Hey guys,


Next, I've been having terrible mood swings. My poor girlfriend has to deal with my foolishness. I wish I knew a way to control hem




My girlfriend deals with the same! (She get's a double whammy because I have Bipolar Disorder too, bless her.) I think it must be hard for partners, but I'm sure she understands...with your symptoms and the levels of stress you are experiencing the mood swings are inevitable. Just make sure you talk to her and explain how you're feeling. You'll also feel better if you know she understands. Maybe our girlfriends should start a support group for themselves lol.

Best wishes, Helen x

professor825
03-31-2012, 10:17 PM
I want to thank all of you for your support and well wishes. I appreciate it. I cannot wait until my appointments this week. I hope we will have something to work with. I felt better today, but had spurts of facial pain. Mostly a good day. It was busy at work so fortunately I didn't have much time to concentrate on pain. I'm hoping and praying for the best. How are all of you doing? I hope you are well. Helen, I think you are right, they should start a support group. Lol I'm sure they'll have lots to discuss! Saysusie, my doctors have been great. I feel blessed for that. A few of them live in the building where I work and are extremely helpful. I usually don't like "bugging" them w/ things at their homes, but they all check in frequently. Richmond is not a huge city, but my school (VCU) is the city's big research university so. Im lucky to have access to plenty of physicians. It's good for me personally and professionally since I plan on becoming a doctor. And by the way, I have reservations about that. I'm scared the stress of med school and residency will send me into terrible flares. :-(. It's a risk I'm willing to take though :-). Well, enough blabbing from me. I will update you guys when I hear from my Drs. Have a Spectacular Sunday! And many well wishes!!!

Carli

DrinkofWtr
04-01-2012, 09:57 AM
I am glad you are making more notes for yourself. I know that helps me a lot now that my memory has gotten worse. Hang in there.

tgal
04-01-2012, 10:30 AM
Keep us posted!

E42brchick
04-08-2012, 10:09 AM
Hey Carli,

I just posted something similar so I have somewhat of an idea what you're going through. I'm working on two thesis papers to finish my Masters next month. I also speak Russian but have been forgetting so much of it with all this brain fog and it's so frustrating! I've been writing a lot of things down more often too. But I do a lot of reading and research right now and I have to take TONS of notes because otherwise I'll forget what I just read. You sound just like me, burning the candle at both ends, stressed to the max and so our bodies are freaking out and the lupus is going nuts. I'm slowly learning that I need some kind of an outlet for my stress because I'm normally so high strung and energetic but the lupus just gets me super down when I can't feel/be my normal self. I would offer to help with chem, but I totally suck at it! LOL Much better at languages oddly, despite both being based on memorization.

Tramadol doesn't work for me either. I'm on hyrdrocodone and oxycodone but only because NSAIDs landed my in ER for severe abdominal pain. They do help but sometimes can make me sleepy so I usually drink a Monster energy drink. I know it's not the best thing for me but when you have a baby, work full time, and are in school you gotta do what you gotta do. I hope you try and relax!!

professor825
04-09-2012, 06:14 PM
Hey Carli,

I just posted something similar so I have somewhat of an idea what you're going through. I'm working on two thesis papers to finish my Masters next month. I also speak Russian but have been forgetting so much of it with all this brain fog and it's so frustrating! I've been writing a lot of things down more often too. But I do a lot of reading and research right now and I have to take TONS of notes because otherwise I'll forget what I just read. You sound just like me, burning the candle at both ends, stressed to the max and so our bodies are freaking out and the lupus is going nuts. I'm slowly learning that I need some kind of an outlet for my stress because I'm normally so high strung and energetic but the lupus just gets me super down when I can't feel/be my normal self. I would offer to help with chem, but I totally suck at it! LOL Much better at languages oddly, despite both being based on memorization.

Tramadol doesn't work for me either. I'm on hyrdrocodone and oxycodone but only because NSAIDs landed my in ER for severe abdominal pain. They do help but sometimes can make me sleepy so I usually drink a Monster energy drink. I know it's not the best thing for me but when you have a baby, work full time, and are in school you gotta do what you gotta do. I hope you try and relax!!

Hey,

I couldn't imagine working on a Masters with this brain fog. I'm sure it's hard. I plan to go to grad and then med school so I hope I get it together quick. And you have a little one on top of it all. I completely applaud all of you with children and any illness. I know it's hard but you guys do it. I tip my hat to ya! Oh and surprisingly enough I suck at chem too lol which kinda sucks for me. I think I'm going to ask my Rheumy to switch my pain meds to something else. We spoke about it Tuesday.

Oh by the way everyone, she's recommended I taper down the prednisone 10mg a week until I'm down to 10. She thinks it is causing a lot of my issues. So we will see what happens. Went to the Derm to get my biopsy stitches out, and my results aren't back yet so as soon as they come back I'll know if I have some sort of infection(besides the sinus infection). Because of the sinus infection, I couldn't get my cytoxan this past week because it was too risky. So, I'll get it next Monday providing all my lab work comes back ok. My Rheumy is so awesome, she's been extremely helpful and even wrote down things we discussed and reminders for me in case I forgot. She also told me to take a calcium supplement and vitamin d. To raise my levels. Whelp, thats all I know for now, so I'll update you all when I know more. I had a big Medical Microbiology exam today and drank coffee(2 cups) for the first time today. Is coffee ok for us?? I feel ok, just a little hyper, but I needed to do some studying before the test today. I've found that studying too far ahead of the test(even by a few days), I'll forget the info. So now I study the day before and the day of. I've got to do it again Wednesday for an even bigger exam so I hope I'm ok on coffee consumption. I hope all of you are feeling good and if not I hope it gets better. Till next time...

Carli

steve.b
04-09-2012, 08:55 PM
....My Rheumy is so awesome, she's been extremely helpful and even wrote down things we discussed and reminders for me in case I forgot. ...

she sounds wonderful. you are lucky.

magistramarla
04-09-2012, 09:07 PM
Carli,
I'm the queen of coffee drinkers. No matter how bad it might be for me, my morning cup of coffee and glass of iced coffee with lunch is a vice that I refuse to give up. Actually, it's safer for everyone around me that I get that coffee!
Like red wine, studies have been finding that coffee is actually good for most people. So drink up in moderation!
Good luck on those exams!
Hugs,
Marla

professor825
04-22-2012, 02:49 AM
Hey guys,

I wanted to updat you all on my case. So after two weeks of waiting for biopsy results, I found out the pathologist that usually does the labs was at a conference and didn't have a chance to get to mine. Then after another week, my results came back BUT were inconclusive. At this point I thought they were playing a trick on me. :-/ So I had to wait ANOTHER week. my results finally came back Wednesday and they showed Lupus Profundus. Which pretty much is lupus inflammation in the fat under the skin. So this led to the knots/lumps in my head. Soooo now my dermatologist and rheumatologist will consult and come to me with a plan as to how to combat this. In other news, I've tapered down to 30mg of prednisone from 60mg in increments of 10mg. Eventually I'll get to ten. Hopefully my body will be ok with that. So far so good. Well, that's all I got for now. Are all of you guys doing okay? I hope so. Let me know. Happy Sunday. Lol. Later

Carli

steve.b
04-22-2012, 06:55 AM
i am glad that you have a result.
sorry it is so conclusive..... but glad you have it now.


now, as you said, time for the docs to do there thing

professor825
04-22-2012, 06:50 PM
Thanks Steve. Yea, it's all bitter sweet. I trust my doctors will step up and we can come up with a great plan. Here's hoping!

magistramarla
04-22-2012, 08:25 PM
Hi Carli,
Thanks for the update. It's great that you have a dermatologist and a rheumy who will work together.
I hope that the two of them come up with a way to get you feeling better.
Hugs,
Marla