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View Full Version : Hey to all my Lupies!



professor825
11-21-2011, 08:02 PM
Hello everyone,

I am a new to the boards. This is actually my first post, but I have been lurking and reading your stories. I have received a great deal of info about so many things and I thank you all for that. I am 25 years old and newly diagnosed with Lupus Nephritis. I work full time and I think one of the hardest things I'm dealing with is missing days of work. I am also a full time student (thank God I took this semester off). So many things have happened in this past month, health wise, and its all very interesting to me. I say interesting, because I am a Bio/Chem major so I'm trying my hardest to look at things from the scientific point of view. Truth is, that only gets me so far because at the end of the day I am a patient. Sooooo much on my mind that I cant even begin to express it all. I am set to begin infusions tomorrow and its very probable I will start chemo next week. CellCept helped with the lupus symptoms, but made me very sick, so it didn't work out. Im nervous as hell about tomorrow, mainly because of the expected nausea, but Im trying to stay positive about everything. I look at it this way: I have never really been "sick" in life until this year. I dont have any pain references to compare this disease too. All I can do is compare what Im feeling to how others describe their pain, etc. With that said, I feel there are probably so many ppl worse off than I am. I have good days and then I have terrible days, but I am thankful that Im alive. So thats where I am on the issue. Anywho, just wanted to say hello to everyone and wish you all well. Thanks for reading/listening.

Carli

steve.b
11-21-2011, 11:12 PM
hi carli, thanks for not sneaking around any more.
welcome to the family.

a thing that helps people get to know you .......
is to add some information about yourself on your profile page.

sorry you are going through a hard time at present.
hopefully the new medication will not have toooooo many side effects.

again welcome.

Jaime Bea
11-22-2011, 08:39 AM
Carli,

I am sorry to hear that you are having a rough go! I hope you have some positive supports at home. I am blessed to have a great husband who helps around the house and with our boys. Like you I have my good days and bad days. I am also trying to learn about this disease as it is still fairly new to me. I am glad that you have taken the semester off at school to get some what better. Just don't give up and finish out your education, even if it takes you longer to graduate! So you have been on Cellcept. I was wondering if it helped you to feel better? I am currently on Methotrexate .7ml injections every Friday. It is to soon to see if it will do the trick yet but, it makes me very ill for 2-3 days following treatment. If It doesn't get my blood labs where they should be Doc wants me to move to the Cellcept.
I hope this finds you in good spirits and feel free to friend me! Jaime

Gizmo
11-22-2011, 09:15 AM
Hi Carli, and thanks for coming out of the lurking closet!
First of all, you have an incredible attitude. That will make a huge difference in how this disease affects your daily life. It does help to remember that there are folks worse off than oneself, but you are allowed to feel down and sorry for yourself sometimes, anyway.

What kind of chemo are you starting and what kind of infusions are you already getting?

professor825
11-22-2011, 02:06 PM
Hey Steve,
Thanks for the welcome. I appreciate it. I will definitely update the profile. :-)

Carli

professor825
11-22-2011, 02:17 PM
Hi Carli, and thanks for coming out of the lurking closet!
First of all, you have an incredible attitude. That will make a huge difference in how this disease affects your daily life. It does help to remember that there are folks worse off than oneself, but you are allowed to feel down and sorry for yourself sometimes, anyway.

What kind of chemo are you starting and what kind of infusions are you already getting?

Gizmo, thanks for the welcome! I started Solu Medrol (steroids) today through Infusion, I will start Cyclophosphamide (Cytoxan) next week because I cannot handle the CellCept and we've worked out a new plan of action. My BP has been high so I started on Norvasc today. I am also on Prednisone (60mg/day), Diclofenac (NSAID) for pain, and Starting Plaquenil today. Also taking multi vitamin and iron pill. lol so Im pretty stocked up on meds for now. I will definitely try to keep the positive attitude. :-)

professor825
11-22-2011, 02:29 PM
Carli,

I am sorry to hear that you are having a rough go! I hope you have some positive supports at home. I am blessed to have a great husband who helps around the house and with our boys. Like you I have my good days and bad days. I am also trying to learn about this disease as it is still fairly new to me. I am glad that you have taken the semester off at school to get some what better. Just don't give up and finish out your education, even if it takes you longer to graduate! So you have been on Cellcept. I was wondering if it helped you to feel better? I am currently on Methotrexate .7ml injections every Friday. It is to soon to see if it will do the trick yet but, it makes me very ill for 2-3 days following treatment. If It doesn't get my blood labs where they should be Doc wants me to move to the Cellcept.
I hope this finds you in good spirits and feel free to friend me! Jaime

Hi Jamie,

Its kind of rough, but I am making it. I have a great support system. I am very thankful for them. I was on CellCept pills (2000mg/day). It seemed to helped with the symptoms of Lupus, buuuuutttt it made me sick with its own side effects, so that part sucked. Thanks again and goodluck

ritzbit
11-22-2011, 03:48 PM
Hi Carli! Im a Bio/premed major so I know what you mean about trying to look at it from a scientific view. I'm 19, a freshman, and just missed 3 weeks of class! It was stressful. I'm happy you found WHL =) I have found it so helpful! We're on some of the same meds. I'm sorry cellcept didn't work for you =( for me its my wonder drug. Without it I get really sick. I just had my solu medrol infusions a few weeks ago for vasculitis. Hope everything for you goes well!

professor825
11-22-2011, 09:46 PM
Hi Carli! Im a Bio/premed major so I know what you mean about trying to look at it from a scientific view. I'm 19, a freshman, and just missed 3 weeks of class! It was stressful. I'm happy you found WHL =) I have found it so helpful! We're on some of the same meds. I'm sorry cellcept didn't work for you =( for me its my wonder drug. Without it I get really sick. I just had my solu medrol infusions a few weeks ago for vasculitis. Hope everything for you goes well!

Ritzbit, fellow pre-med. Im going the non trad route (grad school b4 med), but we are headed in the same direction. I understand your frustration with missing class. I went through that before I figured out what was wrong with me. And believe me, it was depressing. Because of the extreme fatigue, etc. I actually thought I was being lazy. I just thought it was from working fulltime and pulling overtime. It began to depress me, because I didnt want to do HW or anything although I KNEW I should. I thought I was lazy, but believe me I am far from a lazy person and my word is my bond. So, it upset me that I wasnt doing my part in schoo. BUUUTTT that is over. Glad I know there is something wrong and am actively treating it. Glad CellCept worked for you. It did great things for me as far as Lupus, but it just had a personal vendetta against my GI system and Kidneys lol. Its quite alright. I pray all works out with this new treatment plan. Hey, let me know if you ever need to chat abt. school work or anything. And thanks for your well wishes. :laugh:

Saysusie
11-23-2011, 08:43 AM
Just wanted to pop in to add my "Welcome" to those you've already received. I am glad that you and Rizbit have connected as she has been with us for quite a while and has always persevered in her determination to continue her education. I think that she could be a good resource for you 'cuz this young lady had been through it and back again, and always with determination and hope!

Many of us have beat ourselves up and thought that our fatigue and inability to do what we once were able to do was due to our laziness. The truth is, we are all so very far from being lazy. Like you, we are all fighting this illness that affects every inch of our bodies and every area of our lives..yet we continue to rise. How many healthy people can you say have the strength and fortitude that we have??? You should be very proud of yourself and your efforts, we are!

I am sorry that you are dealing with so much right now, but your treatment regimen and your meds sounds like they are covering all bases. Some of your meds are cumulative and you will have to give them some time to work before you see significant results. Until then, I do hope that you start to get some relief from your symptoms very soon.

Again...Welcome to our family

Peace and Blessings
Namaste
Saysusie

ritzbit
11-23-2011, 10:38 AM
I was like that a few year before I was diagnosed. I was always so tired and I just didn't want to do anything anymore. I slept all the time. Everyone would tell me how lazy I was because I wasn't getting any of my home work done and was falling asleep in class and didn't do anything around the house and quit cheerleading. Then when we found out I had lupus my mom was like sorry for calling you lazy half of your life lol I'm so worried about having a flare up again with the vasculitis. If Im just feeling tired or other things are flaring up I can still make it to classes but my feet swell up to the point I cant drive or walk so I cant get there. I don't know what I'll do if I get sick again after this semester. All my classes this semester were easy but after this I'm jumping into a crazy 2 year plan to get finished because I already had a lot of credits coming in. I basically am taking bio and chem and italian and thats it along with a math class and eventually physics. I think I'm crazy. I hope everything with your new meds work out well for you!

trustme
11-24-2011, 07:37 PM
wow you have a job? you are stronger than you think. im sad that you have been missing days but that is a accomplishment. you deserve a pat on the back. im majoring in communication disorder also known as speech therepist but im having some time off from school. i do have a associate degree and was looking for a job but i don't know if i will have to take chemo therapy or not. it kind of would be cool to shave my head though. i don't like hair. i shaved my hair once years ago and my mom flipped. i like to wear wigs. if you ever want to talk send me a text. i think i added you as a friend if i did it right. you seem like a really cool person to just be 25. i thought you were my age. i guess that's your maturity level. im glad to have found you on here. i like nice people.

magistramarla
11-25-2011, 08:06 PM
Hi Carli,
I just wanted to welcome you to WHL. I saw that you are pre-med and that you will be going back to NYC. Does that mean that you will be going to NYU?
My oldest daughter is a Neurobiology post-doc there. If you are ever interested in seeing here research, send me a PM.
Fatigue is the enemy that we all love to hate. I used to be a very active mother of five and a high school teacher. Now I'm disabled, retired and a long-distance grandma.
I've had to learn to pace myself and to not schedule too much in a day. It's frustrating to no longer be able to accomplish lots in a day. I do stay involved in things, but by doing one thing a day.
Best of luck to you.
Hugs,
Marla

professor825
11-25-2011, 11:25 PM
Just wanted to pop in to add my "Welcome" to those you've already received. I am glad that you and Rizbit have connected as she has been with us for quite a while and has always persevered in her determination to continue her education. I think that she could be a good resource for you 'cuz this young lady had been through it and back again, and always with determination and hope!

Many of us have beat ourselves up and thought that our fatigue and inability to do what we once were able to do was due to our laziness. The truth is, we are all so very far from being lazy. Like you, we are all fighting this illness that affects every inch of our bodies and every area of our lives..yet we continue to rise. How many healthy people can you say have the strength and fortitude that we have??? You should be very proud of yourself and your efforts, we are!

I am sorry that you are dealing with so much right now, but your treatment regimen and your meds sounds like they are covering all bases. Some of your meds are cumulative and you will have to give them some time to work before you see significant results. Until then, I do hope that you start to get some relief from your symptoms very soon.

Again...Welcome to our family

Peace and Blessings
Namaste
Saysusie

Saysusie,

Thank you for our warm welcome! Yes Rizbit seems very nice and I do admire anyone these days who has health issues and still finds a way to continue their learning. And yes, I really thought I was becoming a lazy person, so its good to just KNOW that Im not. I mean we ALL have a "lazy" day every now and again, but I really felt depressed about this. The bad part is that I didnt know what I had to be depressed about, so I freaked out a lot. Im just glad to be beyond that point. Thank you so much for your encouragement and well wishes. I also want to wish you well. Thanks again for the welcome and blessings. :-)

Carli

professor825
11-25-2011, 11:38 PM
I was like that a few year before I was diagnosed. I was always so tired and I just didn't want to do anything anymore. I slept all the time. Everyone would tell me how lazy I was because I wasn't getting any of my home work done and was falling asleep in class and didn't do anything around the house and quit cheerleading. Then when we found out I had lupus my mom was like sorry for calling you lazy half of your life lol I'm so worried about having a flare up again with the vasculitis. If Im just feeling tired or other things are flaring up I can still make it to classes but my feet swell up to the point I cant drive or walk so I cant get there. I don't know what I'll do if I get sick again after this semester. All my classes this semester were easy but after this I'm jumping into a crazy 2 year plan to get finished because I already had a lot of credits coming in. I basically am taking bio and chem and italian and thats it along with a math class and eventually physics. I think I'm crazy. I hope everything with your new meds work out well for you!

Ritzbit,

You are not crazy! lol If so, then I am too. My last semester I took Calculus, Physics, Bio, and Chem. So I knooooow what you mean lol. Bur I will say that Physics was not as hard as I thought it would be. I totally understand what you mean about finishing because I feel like I have been in school forever and the last semester seemed like it took forever. But one thing Im learning is patience is important. I wish you well! Im sure you'll do great!! And thanks for the well wishes :-)

Carlene

professor825
11-25-2011, 11:46 PM
wow you have a job? you are stronger than you think. im sad that you have been missing days but that is a accomplishment. you deserve a pat on the back. im majoring in communication disorder also known as speech therepist but im having some time off from school. i do have a associate degree and was looking for a job but i don't know if i will have to take chemo therapy or not. it kind of would be cool to shave my head though. i don't like hair. i shaved my hair once years ago and my mom flipped. i like to wear wigs. if you ever want to talk send me a text. i think i added you as a friend if i did it right. you seem like a really cool person to just be 25. i thought you were my age. i guess that's your maturity level. im glad to have found you on here. i like nice people.

Hey Trustme,

I did get your friends request, and I believe I have answered it correctly (still learning to navigate the site). Yes, I have a job and it can get stressful these days, but Im making it. I think because I love my job, it makes it easier. And yea Im only 25, but I've been told I have an old soul. I like to say Im 58 on the inside lol. Dont know why I chose that #, but i think it fits. I too have an associates, in Social Science, but I think its worthless. lol Cant wait to finish my B.S. degree. Im so impatient with it. Thanks again for the request, and hit me up anytime.

Carli

professor825
11-25-2011, 11:58 PM
Hi Carli,
I just wanted to welcome you to WHL. I saw that you are pre-med and that you will be going back to NYC. Does that mean that you will be going to NYU?
My oldest daughter is a Neurobiology post-doc there. If you are ever interested in seeing here research, send me a PM.
Fatigue is the enemy that we all love to hate. I used to be a very active mother of five and a high school teacher. Now I'm disabled, retired and a long-distance grandma.
I've had to learn to pace myself and to not schedule too much in a day. It's frustrating to no longer be able to accomplish lots in a day. I do stay involved in things, but by doing one thing a day.
Best of luck to you.
Hugs,
Marla

Hi Marla,

Thanks for the welcome! Yes I do plan to move back to NYC. I'm actually thinking of applying to a Masters program and NYU-Polytechnic Institute (The merger between NYU and Polytechnic Engineering school). I do also plan on applying to as many other schools of possible. I would love to learn about your daughter's research. I am currently volunteering in a Human Genetics lab and I love it. I think its great you were a high school teacher, that is something Ive always wanted to do. My aunt teaches high school. Fatigue can be terrible, but like you said I have to learn to pace myself. Im learning :-) Thanks for the well wishes. I hope you are doing well too. Have a great night.

Carli