New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/29/2007 8:03 AM (GMT -7)   
Sometimes I feel as if I can't complain around my family.. and although they're amazing, especially my mother dealing with me being so sick I still feel horrible for complaining, sometimes she feels like she can't complain about anything.. and I know that complaining to her makes her feel helpless because she can't do anything about it.
So I must say, I'm very thankful for this place, because as many people know that are in the same shoes.. doctors and people make you feel as if you're insane a lot, because you have so many things wrong with you. So the venting begins...
I'm 25 years old, and although I HAVE been sick since I was 13.. it's gotten worse lately, as I've stated before. All the doctors appointments.. never being able to work, and having no insurance but just now being diagnosed with something bad enough to get on disability for. Despite the fact that before I got dxed with lupus, I had A-fib, tachy cardia (which has now changed to SVT.. my heart rate gets over 200 at times), high blood pressure, Renal stenosis, Biliary C, horrid migraines (which I was told are lupus headaches, or headaches from FM) FM, (Which I was told that most people can't get on disability for because the symptoms vary so much, and it's really hard to have a definate testing for) Seizures (that they couldn't figure out, because my EEG and MRI's didn't show anything) an ovarian tumor, nueropathy..arthritis.. anyway you get the picture. I'm not on insurance, and I have to go to a free clinic for general practice and I have to pay out of pocket for all the specialists. It urks me when people say things like.. "You know, it could always be worse, and you should be thankful for what you have." I AM thankful for what I have.. I thank God everyday for my amazing mother who has always taken care of me.. but aren't we entitled to our bad days too? I know that nobody else understands unless they've been there.. which is why I'm very thankful for this place. The winter time is horrible. I'm having to use a cane.. and I feel ridiculous needing to use a cane at my age. Sometimes I can't get out of bed.. other days I don't feel like getting out of bed, but I do anyway. I feel as if I've never fully been able to experience life like most people. I've never been able to work.. dance.. do things that most people my age have been able to do. I get frustrated when people ask me what's wrong, I say lupus.. and they haven't a clue what it is.
Alright, I had to get that off my chest.. thank you for reading my venting.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted 11/29/2007 11:11 AM (GMT -7)   
Rebecca, I know how you feel. I have no insurance at the moment either and I have to pay for medicines and specialists out of pocket as well. My parents are helping me out with that and I feel like I can't complain to them either! They work so hard and are trying their best and I just want to get better so they won't have this extra stress.

I really hate the be thankful for what you have speech as well. It feels to me like people say that because they don't know what else to say. It's like, yeah your life sucks, but you shouldn't complain because there's worse out there. I'm sorry, it sucks, and I'm going to complain if I feel like it. Well except to my parents. With me, a lot of people where I'm originally from seem to think that lupus is a death sentence. When I tell them I have lupus, they think I'm going to die. Even if I explain otherwise, they still think I'm going to die. It's annoying.

I hope you feel better though. As for doing things that people our age do, I understand the envy. Though sometimes my friends' lives are so complicated I think I don't mind my life.

I hope you feel better. Please keep us updated and take care!
21 yrs old - Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, spironolactone, nexium, furosemide, oscal + d


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/29/2007 6:45 PM (GMT -7)   
Rebecca, my heart goes out to you and melissa and the others who are so sick and don't have insurance. It has to make getting treatment so much harder. You are right about what a great place this is - it has been like a lifeline for me and it can be such a blessing to come here and be among people who truly understand the ups and downs of living with this disease.

First of all, I don't think that you are complaining. You have been through a lot and you need to be able to talk about it. I think those of you who get this disease at a young age have even more to deal with emotionally because you probably missed out on things healthy people your age did. I think that most of us here try to stay upbeat and positive, but there are times when everything just gets to be too much and you need a compassionate ear and a shoulder to cry on and we are all here for you. So many things about this disease are unfair and there is a lot of greif that goes along with this disease.

I'm finding it hard to talk to family about my illness lately too and want to figure out a way to do it withought seeming like I'm asking for pity because I'm not - I just want people to try to understand. It's hard because most people just don't know much about lupus or understand it very well at all.

Hang in there. I'm glad you were able to talk about your feelings here and I hope it helped. You can vent anytime.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/29/2007 7:19 PM (GMT -7)   
Thanks so much for the understanding and well wishes. It's been really hard on me lately.. and this place is amazing, I was just thinking about how I felt before I even knew I had lupus.. and how sick I was.. I didn't think anyone would ever understand how it makes you feel to be misdiagnosed, looked over, looked at as if you're out for a hand out, or pain medicine, or goodness knows what ER's have thought about me. It was really hard before, for me to even tell anyone about me being sick because I was afraid they'd give me sympathy or pity.. or think that is what I was after. I'm the same way.. I just wish people could have a little more understanding.. but I decided to tell as many people I could about my story, and what lupus is.. just to try and inform people. Melissa, I understand the family thing.. my grandfather whom, I'm very close to.. thought lupus was a horrid death sentence. I tried to explain to him what it really is.. but yeah, I thinks he still has the bad outlook. It's so hard to talk to your family about all of it.
At Thanksgiving it was the first year that everyone in my family has been together in 17 years. Recently my hair, eyelashes, and eyebrows fell out.. apparently because of an odd reaction, to depakote (or so that's what the ER doctor said recently) I'm having to walk with a cane as well.. and it took a lot of strength to just go.. and then of course as most people know during flares, especially.. I only lasted about 2 hours before I had to take a nap. Everyone just kind of acted like I was just fine.. except my grandfather.. he walked on eggshells. Is it bad that I don't want people to act as if there is nothing wrong.. but I don't want people to walk on eggshells? Just a little understanding.. that's all.
Thank you very much for the positive feedback. I appreciate it.
I wish you all the best.
Diagnosis - SLE, FM, high blood pressure, A-fib, SVT, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis. chronic kidney stones.
Medications - Depakote, ativan, lyrica, metrapolol, zantac, predisone, shots of cortisone, shots of lidocaine.
http://www.myspace.com/lupusgroup
Help spread awareness.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/30/2007 2:55 AM (GMT -7)   
((((((((((Rebecca)))))))))))

In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 11/30/2007 7:26 AM (GMT -7)   
Rebecca and Melissa (((HUGS))).  You both are going through so much at such young ages.  Rebecca, I'm glad you're able to vent here so you can feel a bit better Sweetie.  I'm sending you lots of positive energy.  Love, Butterflake

Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 12/3/2007 6:31 PM (GMT -7)   
Thank you very much, it's been really hard lately. Actually I just got of the hospital, fun fun. This time of the year is never fun for the joints.
Diagnosis - SLE, FM, high blood pressure, A-fib, SVT, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis. chronic kidney stones.
Medications - Depakote, ativan, lyrica, metrapolol, zantac, predisone, shots of cortisone, shots of lidocaine.
http://www.myspace.com/lupusgroup
Help spread awareness.


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted Yesterday 4:09 PM (GMT -7)   
Hang in there Rebecca. When I have bad joint pains, my mom got me this lotion thing with emu oil. They say emu oil is a good anti-inflammatory. It helped me out, so maybe you can try it. Take care.

Thanks for the well wishes everyone.
21 yrs old - Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, spironolactone, nexium, furosemide, oscal + d


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted Today 2:56 PM (GMT -7)   
Update:
I was in the hospital for only 2 days.. thank goodness. I was hoping it wasn't going to be worse than that. It was one of my worse flares to date. I was having to use a cane because of my hip.. that has just had a lot of worn down cartiladge.. and now, I'm having to use a wheelchair for when I seriously need it. I also had to shave my head, between most of my hair being gone and the sores on my head... it seemed easier that way, the pain is horrid... so they put me on 1 to 2 7.5 oxycodone when needed. They also upped my Plaquenil, and predisone.. and gave me some phenagran. Oh and they did have to up my depakote.. I had quite a few seizures. Most of my family has been great.. but one of my best firends, just seemed to have tinkered off... He's the one that took me to the ER, and he's the one that came got me.. but past that he hasn't seem in the past few days..he says it's just work, but anyone knows no matter WHAT situation you're in something can happen tomorrow.It's just sad to deal with.. and I hope it won't last much longer, I'll give him his space in the mean time, I'll spend time with my family who loves me very very much.
I hope everyone TRIES and stays well!!!
Xoxoxox
Diagnosis - SLE, FM, high blood pressure, A-fib, SVT, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis. chronic kidney stones.
Medications - Depakote, ativan, lyrica, metrapolol, zantac, predisone, shots of cortisone, shots of lidocaine.
http://www.myspace.com/lupusgroup
Help spread awareness.


melissa2k12
Regular Member


Date Joined Aug 2007
Total Posts : 39
   Posted 12/7/2007 10:53 AM (GMT -7)   
I'm happy to see that you're keeping things upbeat Rebecca. Enjoy your time with your family and don't worry about your friend. Hopefully he'll come around soon enough.
21 yrs old - Diagnosed SLE 2002, Raynaud's and Hives 2004, Lupus Nephritis 2007
cellcept, prednisone, plaquenil, zrytec, cozaar, spironolactone, nexium, furosemide, oscal + d


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 12/9/2007 11:02 AM (GMT -7)   
Thank you, it's been hard trying to stay upbeat, when I was in the hospital they gave me large doses of auto-immune suppressant drugs that caused the rest of my hair to fall out.. so I had to shave what little bit I had off, between that and the horrid storm we're having that's causing havoc on my arthritis and everything it's been pretty bad. My friend said that being in any sort of relationship with me was too much respondsibility, this was the first time he's seen me this sick.. he pulled back as soon as I was put into the hospital.. it's disinheartening but I have a family that's very loving and supportive, and I'm thankful to God for that. I'm trying to not let depression rear it's ugly head, but it's coming.. I'm just thankful for this place and everyone being so uplifting.
I hope everyone is staying well.
Diagnosis - SLE, FM, high blood pressure, A-fib, SVT, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis. chronic kidney stones.
Medications - Oxycodone, ativan, lyrica, metrapolol, zantac, prednisone, plaquinil, cellcept, phenagren, potassium, shots of cortisone, shots of lidocaine.
http://www.myspace.com/lupusgroup
Help spread awareness.


lupus fighter
Regular Member


Date Joined Nov 2007
Total Posts : 50
   Posted 12/9/2007 2:40 PM (GMT -7)   
Rebecca you are in my thoughts and prayers. I understand how you feel. Praying that you feel better soon.
Loving Life 
 
 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
 
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 12/9/2007 5:31 PM (GMT -7)   
Thank you, very much. I appreciate the thoughts and prayers.
Diagnosis - SLE, FM, high blood pressure, A-fib, SVT, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis. chronic kidney stones.
Medications - Oxycodone, ativan, lyrica, metrapolol, zantac, prednisone, plaquinil, cellcept, phenagren, potassium, shots of cortisone, shots of lidocaine.
http://www.myspace.com/lupusgroup
Help spread awareness.


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 12/11/2007 8:49 PM (GMT -7)   
I needed to whine again.. it's been a bad few days, I just got out of the hospital recently, and now I'm throwing up.. having horrible acid reflux, the sores in my mouth are really bad.. and it's hard for me to even move. I don't have insurance so I can only go to the doctor at a few different clinics when they're available.. and in the town I live in the hospital is horrible, so I have to travel an hour to go to the ER.. and I haven't had the strength to even go to the ER. I go to the doctor on thurs. and I'm sure that if all this keeps up he'll put me in the hospital.. he's the one that put me in the hospital a week ago. It's just such a a pain to already be sick and then it gets worse.
Thanks for reading my whining.
Diagnosis - SLE, FM, high blood pressure, A-fib, SVT, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis. chronic kidney stones.
Medications - Oxycodone, depakote, ativan, lyrica, metrapolol, zantac, prednisone, plaquinil, cellcept, phenagren, potassium, shots of cortisone, shots of lidocaine.
http://www.myspace.com/lupusgroup
Help spread awareness.

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 7:33 AM (GMT -7)
There are a total of 2,732,494 posts in 301,027 threads.
View Active Threads


Who's Online
This forum has 151186 registered members. Please welcome our newest member, debbixij.
264 Guest(s), 7 Registered Member(s) are currently online.  Details
John_TX, Huddie, Buzzlymeyear, franko63, Traveler, trumpet123, (Seashell)


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer