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sharky456
Regular Member


Date Joined Sep 2008
Total Posts : 30
   Posted 9/14/2008 5:11 PM (GMT -7)   
I kind of missed the boat and didn't bother to introduce myself. I am 25 years old and have had lupus for about 7 years. Beginning in 2003, my senior year of undergrad, I did a year and 3 months of pulse cytoxan because of huge amounts of neurological degeneration, and significant weight loss amongst other things.. I went into remission on the cytoxan and began taking 3000mg/day of cellcept for a year until i got an infection that landed me in the hospital and was pulled off of it. I have taken prednisone for 7 years as well as plaquenil. I have a mood disorder (completely stable since May 2007, no major episodes) and suprisingly low amounts of prednisone can make me agitated and even suicidal (funny thing is that when I get IV pulse steroids or IM injections I have no mood problems... riddle me that!) rolleyes

I try to be as active as possible because that has been a huge weapon against pain, lupus symptoms, and prednisone weight gain. However, in the last 2 years I have gained weight- though I am not overweight, I struggle with ALL of it being on my stomach... My rheum and I added methotrexate a few months ago because the symptoms from 7.5mg prednisone were too much- sweating, nightmares, moodiness, on top of all the usual culprits. (A little bit goes a LOONNG way with me. It makes me feel like a pansy or something when I complain about the side effects but I have always been kind of a lightweight). Anyhow, I felt a ton better after about 2 weeks of injections except the day of/day after nausea that was helped with zofran and as agreed upon I began to decrease the prednisone. Once I got to 4mg I started going about 1/2mg approx every 3 weeks. I was overjoyed that I didn't feel like a crazy person anymore and my skin was getting back its elasticity among other things...

A little more about me, I am finishing up my PhD in engineering in about a year, I am a very stubborn person and I know I can make it through whatever comes at me because of all of this mess. That's about all for now so I can get some work done before bed. Nice to meet you all.

Take care
Sharky

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/14/2008 6:48 PM (GMT -7)   
Hi again Sharky . . .

Thanks for the intro! Are you M or F ??? Most of us are F, but there are a couple men who post periodically as well.

WOW!! Fantastic that you are finishing your PhD !! What a huge accomplishment!! Thanks so much for sharing!!

Its also great to hear that exercise is helping you.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/14/2008 7:49 PM (GMT -7)   
Hi Sharky!
 
Welcome! Yeah, it's fantastic that the exercise is working in your favour. I had a year of exercise back in 2004 where I was in really good shape. I was able to handle a serious cardio workout and weights.  Then it all went to crap..... I can't manage more than about 20 minutes on the bike now. I hope to get back to the place I was at in 2004.
 
All the best to you with your studies!  Sounds like a lot of work!!!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/16/2008 5:58 AM (GMT -7)   

I bid you welcome also.  I was going into a Masters program last year.  all I lacked was signing the papers to obtain the loans, and had a heart attack.  Learned that sometimes our heart will do ok with normal activity, but be unable to handle increased activity or stress.  and so it was with me.  But I don't regret it.  Have always wanted my masters of social work, but it is something i had to let go of.  I am thankful that i still have my life with my family.

I wish you luck and prayers for your engineering Phd.  then you can make the big bucks;)

Hester

 


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


sharky456
Regular Member


Date Joined Sep 2008
Total Posts : 30
   Posted 9/16/2008 1:08 PM (GMT -7)   
Rosie-
I am female- haha I should have mention that somewhere since grad degrees in engineering are almost all male... I actually like it better because 1) there is no catty, hormonal, girl-fight type competition and 2) most of the other grad students are afraid of girls so i can get away with whatever i want! and in a few short months (though it seems like forever!) I will have a PhD in chemical engineering. tongue

I am very lucky to be as active as I am though excessive fatigue has made things harder lately. I also realize that I push myself harder than the average perfectionist. I know the stress is getting to me but it is still hard to hold back...

Serina-
I'm sorry you weren't able to get your masters but honestly, you never know what tomorrow will bring.. One thing that is a HUGE bonus for me is that if you do a PhD in engineering your tuition is paid for and you get insurance and a small stipend to live off of. Though grad studnets make basically no money and spend tons of time in the lab, the health insurance is the BEST anyone could imagine. It covers everything!

I am excited to be making big money some day soon so I can share the wealth. I know it sounds lame, but when I am in a stable, sound position financially, I like nothing more than to give random gifts. One only needs so much "stuff" (and I cant stand clutter! lol).

Ginny-
I hope that you are able to go little by little and get some of the stamina you lost. It is really devestating to feel like you can't move- and super boring! My rheumatologist always asks me how much excercise i am getting (not just because the prednisone is getting me GIANT!) because the burst of energy I get from it and how much it helps my joints.

Alright. Time to take the dog out.

Sharky smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7017
   Posted 9/16/2008 1:18 PM (GMT -7)   
Welcome, Sharky -

I was doing the final research for my dissertation - PhD Computer Engineering - when lupus waltzed into my life and grabbed up all my energy. Since I'm twice your age, I wasn't able to recover to the extent that you obviously have (although I did fully enjoy my engineering career for 25 yrs prior) - I wish you continued success with your educational & career endeavors!

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


sharky456
Regular Member


Date Joined Sep 2008
Total Posts : 30
   Posted 9/16/2008 1:45 PM (GMT -7)   
Lynnwood-

a SUPER nerd, eh!? smilewinkgrin I am impressed by anyone who can handle computer engineering- I have had to write a significant amount of code in C++ and Matlab and though I am a huge fan of programming logic, debugging my own code is a nightmare and always results in procrastination... I was so afraid I was not going to get to grad school or even live until the end of undergrad because I couldn't read and had almost no balance or motor control by the summer before my senior year. The aggressive cytoxan treatment saved my life and my nervous system. I do still have some balance defects and some trouble concentrating- along with the ever-embarrassing hand tremors, but I truly realize I have been given another chance and plan to do everything I can to do as much good as I can while I am still here.

This is going to be a really hard term for me as I am teaching 2 four hour labs a week in addition to research, plus all the stuff that comes with teaching. I hope to be able to support others as well as to complain a bit to those who "get it" in both the academic and the lupus sense.

Take care

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/16/2008 5:32 PM (GMT -7)   
Sharky,

I love your attitude and your energy and I'm so glad you found us. Stick around. Sounds like you have a lot to share!

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/17/2008 3:10 AM (GMT -7)   
Alright. Time to take the dog out.

Sharky smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin
 
I agree with you energy and attitude, and you are the first person to indicate to me that I still have a chance to get that masters degree.  You are right, there is always a chance.  One of my favorite people here, studied for her masters when she was older than i am.  I am 62.  maybe this disease will go into remission for me.  It has happened before.  I had simply given up, and accepted my position in life, when this flare started.  Certainly can't do it today.  I can't even sit up for more than a few minutes  without pain.
 
Thank you for the hope you inspired.
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 


sharky456
Regular Member


Date Joined Sep 2008
Total Posts : 30
   Posted 9/17/2008 3:35 PM (GMT -7)   
Hester-

Honestly, I consider the unpredictability of the disease both a blessing and a curse. You really never know what you are going to get day by day let alone week by week. I understand what it is like to have debilitating symptoms and not be able to walk, drive, or do anything I was used to doing- then there were days that were far less painful- sometimes without rhyme or reason.

I am glad you can again entertain the possibility of a Masters degree. For me, education is important not only for the pursuit of knowledge but for staying connected with the world. Another thing that is nice about education today is that some classes can be taken by correspondence/online. Knowledge really IS power- not only are you learning the subject at hand, you are learning to manage stress, to be empathetic etc and finding a way to connect with people. So never say never, my friend (lol. not sure if I am allowed to call you that as you hardly know me, but it sounded fitting smilewinkgrin )... I know from reading here that a lot of people end up delaying or giving up on dreams- but if you want to really live you can't do that- however you can MODIFY them and change the path you use to get there.

Age is nothing in my eyes- by 21 I had the bones of an old women!! That won't stop you from moving on. I know you have gone though quite a bit and I know your body has paid a heavy price for it, however, from all the things I have read you are strong. The heart attack in 2007 obviously did not weaken your heart in the sense that it matters most. I know you are probably busy, but I hope you will take a bit of time for yourself and take little steps to move towards the things you desire. I'm sorry your pain is so bad right now- I have had times like that too and it is horrible and frustrating. When that happens I make a list of books and demand someone go to the library to fetch them for me! turn I guess the point in all the rambling is don't give up. Just keep remolding your future and hold on to hope. Sometimes it is all you've got but it is very powerful.

Take care.

sharky456
Regular Member


Date Joined Sep 2008
Total Posts : 30
   Posted 9/17/2008 3:36 PM (GMT -7)   
Pat-
Nice to meet you too!

Energy is definately a state of mind for me because if it was a physical state for me, I would be no fun, haha. :)

I look forward to getting to know you.

Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/17/2008 7:17 PM (GMT -7)   
(lol. not sure if I am allowed to call you that as you hardly know me, but it sounded fitting smilewinkgrin )...
 
I feel honored to be called your friend.  After I get straightened out with this flare, I will look into the masters degree again.  All of my studies would have been online, except the three internships I was supposed to do in virginia.
 
I worried about the money I would have to pay back, and my SSB check being garnished to pay them with, if I did not pay them.  Still concerned about that.  But still as you said there is hope.  Will just follow it and see where it leads.
 
Hope the rest of your day is good to you.
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin daily, multivitamin daily, Arthrotec 50mg twice daily, Meclazine 25 mg, as needed 4x daily, Hydoxychloroquine (plaquinil) 200mg twice a day, Metoclopomide 10 mg, 4x daily, Doxepin 50 mg one cap 4x day, Metoprolol 100 mg daily, Levothyroxine (synthroid) 50 daily, Amlodipine 5mg daily, Crestor 10 mg one tab daily, Lisinopril 40 mg, one tab daily, Omeprazole (prilosec) 40 mg daily, Plavix 75mg daily, promethazine 25mg x4 daily, Restasis one drop in each eye every 12 hours
 

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