I hate this disease!!

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New Member

Date Joined Dec 2008
Total Posts : 3
   Posted 12/14/2008 12:16 AM (GMT -6)   
Hey everyone! I'm a newbie and just need to vent. By the looks of the postings here, you guys will be more supportive than those around me. I can't talk about how I feel, 'cause no one wants to hear it - so I just keep going and going (just like the energizer bunny.) This disease really sucks! I was diagnosed about 7 or 8 yrs ago. I sometimes think it would be better to have cancer - at least people will believe you. I do my best to be "normal" - have a good paying job, a family that I cater to and a life I wish I wasn't too tired to enjoy. I have Lupus, raynauds, vasculitis, asthma, deep pressure angioedema, and really strange allergies. I react severely to the cold - something no one can understand. I carry an epipen for it and can go into shock after prolonged exposure. I'm not looking to anyone for sympathy, but just a little understanding would be really nice. Co-workers don't understand why I get "special" privileges to park right outside of work when they need to walk a block. I'd like them to walk a block in my shoes on a cold Canadian winters day! Hives, throat constriction, etc. isn't much fun. Does anyone else suffer from this type of allergy? I'm just sitting here - tears streaming down my face. I guess I'm feeling sorry for myself - something I really try not to do. It's really hard when people around you pretend that they understand your disease, but do absolutely nothing to help you out. I still do everything around the house. Then I get the guilt trip 'cause I'm too tired to do what they want me to do after working all day, coming in and making dinner, doing the dishes - I could go on. Sometimes I feel like walking away from everything - my job, my family - everything.
I apologize for dumping on here, but I do feel better talking about it somehow. There are no support groups in my area so I guess I'm kinda looking for it on here.
I'll just keep hoping for a better tomorrow. Thanks for reading!

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 12/14/2008 10:54 AM (GMT -6)   
Hi D and welcome.  You have found a great place for support and understanding.  You came to the right place - there were many times I have come to vent here with tears streaming down my face and the warm support I got from others here helps me feel like I'm not alone in this.  Having lupus can feel pretty lonely at times.  I think one of the really hard things about lupus is that it can be one of those invisible diseases where unless it has crippled you, people can't really see how sick you are and so a lot of healthy people don't realize everything we go through everday just to function.  I quit my job a few years ago, but when I was working, I know that most people did not know how sick I was and what a struggle each day could be.
Don't apologize for your feelings - they are so normal and something we can all relate to.  One of the wonderful things about this site is being able to come here and know that you are among people who truly understand what it is like to live with this disease everyday and that the emotional challenges can sometimes be as big as the physical ones.
I don't know if you have ever read the Spoon Theory but it's a great way to try to explain to others what it is like to live with lupus everyday and it's also validating to read for us lupies.  Here is the website where you can find it: http://www.butyoudontlooksick.com
I'm glad you joined us and I think you will find the support here that you are looking for.  Take care. 
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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


Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 12/14/2008 3:04 PM (GMT -6)   
Hi D,
Welcome! Like Hippimom said, this is a place where you can just be you.  No one judges, we all support each other and do our best to lift each other up.  I also have had many times where I've been in sobbing tears typing posts here.  No one understands what we go through, except those who have the disease, and God! LOL.  I'm sorry your circle of support is lacking.  It must be a very lonely feeling. Well, you have us now, and we're here through the good and bad!
I was diagnosed 8 years ago too.  I've had many ups and downs going through the grieving process. I still haven't fully accepted my limitations and I end up overdoing things and trying to live like I did before lupus.  I'm learning much faster now, that my limitations are real and I have to accept them.  I'm struggling with Fibromyalgia more than my lupus right now.  So that has added to my reality bite.  I'm even more limited with my Fibro.  It's hard to cope and find peace sometimes.  But I lean on God and my faith in Christ to get me through.  Thank goodness I have that!
You can ask any questions you like. We're here to support and learn from each other. 
I have some strange allergies myself. But not what you are describing.  I think lupus being an immune system disease will make allergies very odd!!  You're a Canadian!  Me too.  I"m in southern Alberta!  BRRRRRRRRRRRRRRRRRRR.  -40 with the windchill today. 
I hope you have a good Sunday and I look forward to getting to know you more,
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, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

New Member

Date Joined Dec 2008
Total Posts : 3
   Posted 12/15/2008 6:11 AM (GMT -6)   
Thanks so much for the words of encouragement, I did have a better day Sunday.

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 12/15/2008 10:39 AM (GMT -6)   

Hi D. I really wish you could slow down. There are a few lupies here (myself included) who had to give up great careers and I had a boss who went out of her way to accomodate me. Finally I ran myself into the ground, became very ill, unable to bathe or dress myself and had to resign. Like Ginny said the limitations lupies have are very real. BTW I had co-workers who didn't understand too. I hope things improve for you. I'm sending you lots of positive energy. Love, Butterflake  

Systemic Lupus ('05), depression, diabetes, fibro, gerd, sleep apnea, hypertension, IBS 
 CellCept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin,
actonel, tylenol arthritis, neurontin, phenegren,
flexeril, multi vit, C, flaxseed oil, acupuncture    Welcome to lupus where the strange is ordinary and nothing is normal :Donna

Regular Member

Date Joined Oct 2006
Total Posts : 281
   Posted 12/16/2008 8:11 PM (GMT -6)   
Hi D and welcome. Boy do I know where you are coming from, only I have only had Lupus for 2 years. I also have RSD as well as Lupus and even though people can see my disability in my leg, some choose to still doubt me. It is so hard and I get so tired, but can't do anything about it. I continue to push myself everyday and come supper time I am exhausted and just want to sleep. If only it was that simple though, no matter how tired I am at night, I can't sleep a whole night through.
So I guess what I am trying to tell you is please don't feel like you have to hold anything back here, this place is for us, just to come and have someone know exactly what we are going through.
Can I ask where bouts in Canada you live? I am in Ontario and it is freezing here!!
Take care and vent away, everyone here is so nice and care's about everyone.
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 12/16/2008 9:38 PM (GMT -6)   
Hang in there, D -

It sounds like it may be approaching time to consider options. Many of us slowly had to cut back on our careers/professions when everything became too much -- we each did it our own way, trying out options with home help, childcare help, family involvement, etc. Usually we ended up discussing things thru here first before making any moves -- I remember Hippimom process the best, as we all followed along with her.

Some members continue to have issues, even when the daily stress is reduced (just the stress of an extra 15 minutes of commute time can be a huge lupus trigger!) -- but sometimes a rest really helps the process - I had to retire an entire business, end an almost finished PhD program, and a good bit of personal involvement for several years, but am slowly improving and beginning to think that my professional life might possibly revive in the next couple of years.

Please keep coming back and let us help share the burden -- I totally wish I'd found this group earlier, I had to make some very hard decisions for health's sake, and I may have timed things differently if I had an experienced sounding board like this available at that time.

Take care of *yourself* first!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

New Member

Date Joined Dec 2008
Total Posts : 3
   Posted 12/17/2008 7:55 AM (GMT -6)   
Thanks everyone!
I dont feel so alone now, knowing I have people who understand. I live in Ontario too, Connie!
Thanks again! I will keep checking back.

Regular Member

Date Joined Oct 2006
Total Posts : 281
   Posted 12/17/2008 8:09 PM (GMT -6)   

Hi D. Nope you are not alone at all now that you have found us. I am in Mid Western Ontario, a tiny little town of 700 , right at the corner of four counties, Grey, Bruce, Huron, and Wellington. I hope you are feeling better.



diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Regular Member

Date Joined Nov 2008
Total Posts : 106
   Posted 12/19/2008 1:41 AM (GMT -6)   
Hi Dam no worries about venting it needs to be done to keep your sanity. I noticed you are a municipal employee do you have an employee assistance program (EAP) through work? If you do I would suggest going to see a counsellor it really works it was the one best thing I’ve done for my health. I had recommended the EAP to several of my members when I was the local president of the union never thinking I would have to ever use it. The one thing I did this year was send out a letter with my Christmas cards to my friends and family explaining my disease and the situation I find myself in. I feel like a weight has been lifted off my shoulders not having to carry it all alone. We all get down at times it trying to limit those times that’s the challenge.
DX: IBS 00, +ANA 05, Depression 06, MCTD & Sjogren's 07, GER 08  
Meds: Plaquenil 400mg, Prednisone 10mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg, Metoclop 10mg and numerous other supplements 
Life is what you make of it.  Just something I try to remind myself every day.

New Member

Date Joined Mar 2009
Total Posts : 2
   Posted 3/15/2009 12:50 AM (GMT -6)   
cry Dam Im sorry you are suffering so much...I was shocked to see that you have to carry an epipen for you strange allergies and conditions...my daughter has had Idiopathic Anaphylaxis along with Lupus, Juvenile Rheumatoid Arthritis, Hypothyroidisim,and Fibromyalgia....we carry epipens everywhere we go since she can get anaphylactic attacks with any peanut product someone has eaten, she cant be touched if they ate any, even breathing on her as they speak has triggered anaphylaxis along with peanut smell in the air....she also has had attacks when her body heats up so the air is always at 69 degrees or less......she has allergies to everything and we have to read everything we buy because many foods are mad in places that also produced peanut or nut products..it gets very expensive,difficult and scary. At 15 she can go nowhere but the Doctor's office, and having the other autoimmune diseases also makes it difficult for her to get energy to evn get out of bed every day....so sweety trust me we understand you totally but do not understand why she is allergic to so many things. I was so scared for my daughter that we went all the way to John's Hopkins Hospital to get answers and the answer was that there was no cure and to carry epipens everywhere..so that is what we do and will always have to do. Im glad she is not the ony one out there suffering this way I am sorry though that you do have to go through this but you are not alone anymore. (((((((((((hugs))))))))) and prayers.

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 3/15/2009 8:05 AM (GMT -6)   
Hey D! Just wanted to say welcome to HW! As everyone said this group will be a huge support to you. I like to think of it as my Lupus family! It is impossible for my family and friends to really and truly understand what we have to go through but I know people here do. I am so sorry about all the problems you are having, especailly how you react to the cold, and the fact that you live in one of the coldest places in America....at least in my opinion. Don't know if that is a fact or not but just from what I see on the weather channel....BRRR. BigBry brought up a good point about the EAP, my work offers it and I have used it several times! It is a great program and the best thing...they are there 24/7 everyday all year long!
Take Care



21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 3/16/2009 12:04 PM (GMT -6)   
Welcome D,
I was recently hospitalized for a severe infection and a severe lupus flare. When the transport person came with the wheel chair she said, "I gotta hurry and get that other man to his room, he really looks sick! I was mortified! I had a life threatening infection and in so much pain from lupus I was miserable and she implied that I wasn't sick!!! People just do not understand Lupus and that's all there is to it. Don't let their ingorance or lack of willingness to undersand destroy you. There are people in the world that know exactly what you're going through! Hang in there girl and stick with the forum...you've found a great group of caring compassionate people. God Bless ya, Judy

Regular Member

Date Joined Feb 2009
Total Posts : 20
   Posted 3/16/2009 12:21 PM (GMT -6)   

D, I think most of us have been in your place at one point or another. Right now, I just am tired of being too sick to do anything. Your post reminded me of an episode of "Dr.G:Medical Examiner". The patient she was posting was a 42 year old lupus patient who ultimately died from diabetic ketoacidosis, but when Dr.G looked at her tissues, she found damage from lupus in her brain, lungs and kidneys. She said that when she sees what people live with everyday, that healthy people should be thankful for their good health. I wish everyone could watch that segment. It made me cry...one because the woman was only 42 and I'm 49 and two, because I have lung involvement and now kidney involvement and am on SSD. I have good days and bad- lately it's been bad and my husband is in the midst of quitting one job and starting another so he's working 5 of the next 7 days- 12 hr shifts so I'm playing single mom and am just not up to it. Wouldn't it be nice if we all could take a week or two off and go off the a place that's just for us? Where people understand this disease and try to help us out? I'm blessed to have my husband, who's grandmother had lupus, so he grew up watching her go through the stuff I am now and how his grandfather helped her so much. He'll come home after working all day and make dinner and do the dishes because after about 4pm, I'm totally useless when I'm flaring like I am now.

And at work....when I was first diagnosed, it got back to me that one of the other RNs was saying I was just lazy, that I didn't have anything wrong with me. Funny how karma works- she was diagnosed with fibromyalgia about a year after I was and I know this sounds evil, but I hope she struggles with pain and fatigue as much as I do. After that experience, I told all my co-workers I had lupus and fibro and some days are worse than others. People were much more understanding and realized that I wasn't just lazy, I was sick. Even RNs need some education about lupus and all the complications that goes along with it.

I think you need to just say "NO!" when all the demands become too much. It's not good for your health and in the end, you'll be only hurting yourself if you keep trying to be all things to all people.

And, as hard as it is, try to blow off those people who grumble about the little stuff (that's actually a big deal to us). It's extra stress o you and that won't help either! Best wishes! Sandy:)

Diagnosed with SLE 1994,Fibromyalgia 1994,Interstitial Cystitis 2000,lupus pneumonitis 2002,peripheral neuropathy 2002,cerebral anoxia 2007,
I can do all things through Christ who strenghthens me. (Phil 3:13)
Go Gators!

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