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skysthelimit
New Member


Date Joined Dec 2009
Total Posts : 9
   Posted Today 10:27 PM (GMT -7)   
I am new to this site and I am glad that I found somewhere to talk to people about this and feel open to be completely honest about everything.  I will start by explaining or telling my story.  I had been back from a vacation to Florida the summer after I graduated high school for about a month when I started to get really sick.  The doctor thought it was this and that from gallbladder to gallbladder stones to stomach ulcers.  I did test after test and took a week off work to get as many test done as possible.  I went to the ER serveral times because my parents were begining to get worried because I was so sick.  I lost close to 20 pounds in two months... and as a result my eyes were sunk in on top of having the dark cirlces under them. So when I went to another specialist he thought I could have lupus.  He did a full blood screening test for that and other things that could be triggering such a reaction.  Everything came back normal yet agian.  I was beginning to think it was all in my head... and maybe everyone was right the whole time who kept telling me that.  Then last winter my knees started to hurt really bad, and nobody really understood how much they hurt.  I began to go up stairs and down very slowly due to the pain.  They did test on my knees because they were swollen and red but once again everything showed to be normal.  I was getting fusterated thinking back to all the test I had done before for the same result- nothing showed to be wrong.  I went to physical therapy for about a month and a half and there wasn't any improvement and the things we were doing there I could do at home and not have to pay to do them.  I stopped going and then I realized that the same time my knees began to hurt I had gotten really weak... hardly able to carry a basket of clothes without being winded.  So I went to my docotor in late Feb early March and found out in March that I did have lupus.  I have been doing pretty good with the medicine I am on- I take Plaquenil and I also have Tramadol for the pain.  It's just hard to explain it to others especially my husband what exactly it is that I go through because I have this.  Or why it gets worse in the winter time. He doesn't understand why I am not wanting to do anything much of coming home from work and doing a few things around the house and relaxing.  They don't understand why it is some days I am fine and cleaning all day and doing odd and end jobs don't bother me but then there are days getting out of bed, going to work, and driving home take all the energy out of me.
Jayme


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 12/4/2009 7:49 AM (GMT -7)   
Jayme,

Your story is sadly a very familiar one to all of us and we understand what you're going through. One of my first struggles was getting my husband to really understand what I was going through. I didn't talk about it all the time, but finally sat him down and had a long and frank conversation with him. He's now totally on board but it took a couple of years for him to get it.

Have you read the spoon theory? It's a great thing to give to your loved ones so that they can hopefully understand what you're going through. You can find it here:

www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

And check the Resources page at the top of the main Lupus page for a lot of good information.

Hang in there, and stick around. You'll meet some nice folks and get the support that you need here.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 12/4/2009 3:39 PM (GMT -7)   
Hey Jayme! Just wanted to welcome you to HW! Most of us understand what your going through and we are here when you need to talk, vent, cry, laugh, pretty much anything! This is a great online family and hope you stick around :)! Pat gave you a great link for the spoon theory. This has helped my family and friends almost understand what it is like to have a chronic illness such as lupus! Hope things start getting better for ya!

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 12/4/2009 10:23 PM (GMT -7)   
Hi Jamye,
Welcome to the forum. I'm glad you found us. You will find a wonderful group of people here that will listen and help you in anyway possible.

My first symptoms of lupus were after a vacation in Fl. back in 1977. I had no idea what was going on with me at that time. Finally, 13 years later I was diagnosed with Lupus.

I'm glad you got a diagnosis and your on a treatment plan. The cold weather is rough on the joints. I hope you get some relief soon.

Hopefully, your husband will read about Lupus and begin to understand what you are dealing with on a daily basis. He can ask questions here if he would like.

Take care and keep us updated. You will be in my thoughts and prayers.

Babs

Artickat
Regular Member


Date Joined Dec 2009
Total Posts : 26
   Posted 12/5/2009 7:53 AM (GMT -7)   
Jayme, if you find a successful way to make your husband understand...please, please let me know.

Ashley

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 12/5/2009 7:58 AM (GMT -7)   
Jayme and Ashley, have you taken your husbands to your doctor's appointment? If they are more involved with your medical treatment, maybe they will learn to understand.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex


Artickat
Regular Member


Date Joined Dec 2009
Total Posts : 26
   Posted 12/5/2009 8:10 AM (GMT -7)   
Yes, he has been to all of my appointments. When we are there he asks many questions...like is there anything she can do to make things a little better and things like that. My doctor actually told him at one point to calm down he is only going to upset me. This is something I will have the rest of my life it isn't gonna go away. I don't know if he is in denial or what it is. He makes me so frustrated...one minute he is devastated but then when it comes to actually helping me more he acts...well i dunno. I will go do something I want and then when I get home I am dead...and his response is, well if you felt this bad you shouldn't have gone or you would have come home earlier. He has told me I use this illness to my advantage...When I don't want to do something I act crippled and when I do I am fine...He is only like his mother though...She had the nerve to call my mom and cry and tell her how devastated everyone is and has offered to come help me but has never come and actually told people she doesn't like to come to my house because it is cluttered and DIRTY....yes DIRTY...you would have to know her to understand the blow that was...her house is absolutely filthy...my 3 year old nephew told her that twice and demanded to go home...she has no job and is a lazy, rotten person. She offers to help me and then not only won't goes and makes fun of me...yes, I go to school full time, have 2 children, 2 dogs, and a husband to take care of...I am slack a little in the house cleaning department but I would not consider my house dirty in any way, shape, or form. I guess all of this is what has made this illness sooo frustrating.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 12/5/2009 10:17 AM (GMT -7)   
Welcome Jayme, this place is filled with wonderful understanding people. Feel free to vent, cry, ask questions, etc. I am sure you will like it here and I look forward to getting to know you.

Lupus is very unpredictable, we have good days and bad. Pat gave you a great link to the spoon theory, it may help your hubby understand what you deal with on a daily basis. Healthy people just don't have a clue when we talk about what we're going through especially fatigue. Here lately I spend my weekends mostly resting, recovering from the week at work and preparing for the next week. It gets a lot worse especially when I'm flaring.

I hope the meds continue to work well for you. Keep us posted on how you are doing and feel free to ask more questions.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 12/5/2009 12:51 PM (GMT -7)   
My husband is gone away right now...he's been gone for 8 months, and will be back in another 4...he too has a long way to understanding how this disease affects me, and everything else involving lupus...it's going to be a bridge we cross when he comes back home. I'm reading these posts and others to glean info on how to help getting him more involved in my health issues too..I like the idea of him coming into my doc's appnt's...he never has before, but then again, I haven't invited him. I didn't realize the help that could be. Something to think about for the future. I know that I need my husband to be a partner with me in this. Right now he isn't either. I think it's not a lack of willingness, just something he hadn't considered. He too doesn't realize fully how sick I am...or how quickly this disease can turn on us/our bodies. I don't think he realizes the possiblities that one day all of a sudden I could have kidney troubles where I didn't before...etc...I have no intention of scaring him, but it's not healthy to live completely in the dark. For now I will read over others attempts to get their husbands/close support network more involved, or knowledgeable in the diease we have and how it truly effects us. It's very humbling to have been a very self-supportive and driven individual and then to have to admit that I'm not up to doing something like housework...that it just feels too much energy wise some days...but we all know what that's like, don't we? Ok, just wanted to add my two cents..that's all. Artickat just know that you're not alone in having a husband that doesn't fully get it...I think it'll be an over-time thing...people always have to adjust...heck, we're adjusting ourselves, aren't we? We're just forced to do it quicker, 'cause our bodies aren't letting us pretend we can't do things that we really would do if we weren't sick. I just hope that he continues for your sake to be interested enough in coming to your appointments, and that one day things will truly click for him. Take care.

Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops
<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/5/2009 1:34 PM (GMT -7)   
may I recommend The Lupus Book by Dr Wallace as reading for your husband? I really wish I could offer more but am having a rough day
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


skysthelimit
New Member


Date Joined Dec 2009
Total Posts : 9
   Posted 12/5/2009 9:58 PM (GMT -7)   

I would like to thank everyone!  I did find out about the spoon theory and have sent it to him by email and my parents and close family as well.  My mom read it and she said it did a great job explaining things!  Your knowledge and suggestions were great and well apperciated!  Thanks Again.  my husband has seemed to understand better after reading the spoon theory.  Yesterday after he read it he helped put supper away and has been asking what he can do to help a lot more.  I am hoping that it sank in and that he continues to help and offer a helping hand.  He doesn't understand the pain and why it comes so fast but I am trying my best to explain it to him when it does come and why like for the cold etc. 

I am glad that I found this for after I posted my lost one I felt a big relief lift off my shoulders.... it felt great to talk to people who understand or even read what others were going through and understand what they were saying. 

He has come to one meetings but the specialist I am currently seeing is kind of hard to understand and he is not use to people like that so I think he was a little timid to ask any questions.  I am going to a new one soon and I am hoping that if/when he goes again he will be more willing to ask questions.  It may also help to that the new specialist will be a male doctor.  We will see after the new year when I go and get the blood work done. 



Jayme

Post Edited (skysthelimit) : 12/5/2009 10:01:14 PM (GMT-7)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 12/6/2009 9:38 AM (GMT -7)   
Jayme, The ideas you've gotten here are a start. It takes patience on our part to get them to work with us rather than turn into the little boys some of them want to be. I never got mad at my hubby, because any of his actions were caused by ignorance of the disease, rather than anger towards me, but I'd get frustrated at not being able to get the help I needed. I took time and patience on both our parts. When I'd come across a site that explained one thing or another (esp fatigue) I'd email it to him. Everyone understands pain, but the fatigue we experience is so hard to put into words.

One day, a few years ago, I printed out a thread on this forum and asked him to read it. We were all talking about this topic and trying to help each other with these partner issues. Someone described her fatigue like this: "It's like if you drop your pencil on the floor, sometimes you look at it for 30 minutes trying to figure out where you're going to get the energy to reach down and pick it up."

It was when he read all of our comments that he finally looked at me and told me that he was sorry, and that he finally got it. Ever since, he's been an angel.

If he's a reader, give him Dr. Wallace's book to read. If not, give him bits and pieces from legitimate websites. And be patient with him too, because this is as scary to him as it is to you. It changes life as you both knew it.

I once asked a mental health professional what their definition of good mental health is and he told me that it's the ability to handle whatever life throws your way. It's hard, and it takes time, but we can all learrn to deal with our health issues and live as normal and happy life as we can.

I'm so glad you're here.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex

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