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Old 03-30-2007, 07:37 AM   #1
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Hard time dealing with emotions

Hi everyone...man am I having a hard time emotionally! I had a positive ANA and high SED rate in October but just got into the rheumy on the 15th. They drew about a gazillion tubes of blood and we got some results back. A little blood in the urine, high liver enzymes, a negative ANA this time, something abnormal with my clotting factor, and it does show some inflammation but my SED rate was normal, I think she said...but the doctor has not verified my tests yet (this was the nurse calling) and when I asked more in depth questions, she said she wanted to talk to the doc and get more information before she talked to me more...I was frustrated. That was Monday!

Anyway, I thought that once I got to the rheumy and they confirmed my diagnosis, that everything would be okay. And the doctor did say that he believes that in 3-6 months on Plaquenil and I will feel so much better and get my former life back...this should all make me feel good right?

But then why I am experiencing such depression! I can't stand being around my friend who has been my friend for almost 13 years. All it seems she wants to do now is tell me what to do..."you need to be working out", the best one was "you just need to push yourself in your house even when you don't feel like it, I do"...this is a person who works out 5 days a week come hell or high water even when she is sick no matter what. She has been telling me how to do my bible studies and I just can't share with her the depths of my emotion right now, because she has had to live through this 4 years...everyone around me is sick of it and I don't blame them. But the end result is, you end up not talking about it and feeling isolated.

So, I was wondering if any of you have had relationships change because of this.

See...I got the intestinal flu 6 weeks ago and had it for 5 weeks...but after reading a couple of your posts, I think it may have turned into IBS? I lost almost 10 pounds during that time and was so weak so needless to say, my housework took a beating and everything got behind. I was so down about my house that I even called Merry Maids to find out how much it would cost to have them spring clean...well, it is very expensive, and I am still considering it...but I am now trying to do one room at a time.

Anyway, my Dad was over here this weekend and he was like..."well you know..you need to get your kids involved and you just need to do a little bit every day" I just wanted to scream at him...my kids do help...they clean their bathrooms at least every other week, help with laundry, but he just doesn't get how much laundry 3 kids and 2 adults put out and how much energy it takes to get them organized and trained and how they have homework every day.

I mean, I spent the whole weekend on laundry and still was not finished. Then I spent Monday spring cleaning our kitchen/dining and had a migraine on Tuesday and was stir crazy depressed on Wednesday so I went to have lunch with my husband and then spent all day yesterday spring-cleaning our living room and passed out around 9:30...and this morning, I am exhausted this morning.

I know I sound like I am whining but I do not feel like I can share how down I am, how frustrated I am, how scared I am about what those tests mean and how angry I am at being judged! I think they all think I am lazy!

Can I get an Amen? I don't know where else to turn! I just know there are people on here who have to understand.

Thanks,

Diane

 
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Old 03-31-2007, 11:57 AM   #2
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Re: Hard time dealing with emotions

Diane, do you have other Lupus symptoms? did the reum. diagnose you with Lupus? If he did, the plaquenil will definately help you with the fatigue. After you get the fatigue under control you should notice you are not so depressed. You are dealing with alot right now, and family and friends rarely seem to be supportive when you don't look like you are sick, which is usually the case with Lupus patients. Extreme fatigue is an awful thing to deal with, and only us other sufferers realize how bad it can feel. Healthy people just don't understand, they feel tired sometimes and to them your fatigue isn't any worse than their's. There is no way for them to know how bad you really feel. I am in no way sticking up for your friends and family. I guess what I'm trying to say is that you most likely are not going to get them to change their thinking because they are not in your shoes. I'm not going to suggest things that you can do to improve you situation, because I know how it feels for people to do that to me. Just know that there are other people that do understand your fatigue and are going through the same thing that you are. Take the plaq, give it time and hopefully you will notice things getting better, don't give up. Sarah

 
Old 03-31-2007, 12:23 PM   #3
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Re: Hard time dealing with emotions

Hi there! I do understand where you are coming from...some days are emotional rollercoasters. Most of the time you deal with it on your own because like you said nobody wants to hear it any more. You are not whining, you need to vent because holding it in hurts too much. I learned from experience...things were so bad for me and the depression was extreme. I found a 'lupie' board like this a few years ago and spent a little time each day talking to other lupies. When you can relate to some one and realize that the exhaustion you feel is not in your head, the pain in your muscles and joints is real, the feeling of helplessness seems to lift a little and you find a person to talk with and share your honest feelings instead of hiding them to please everyone else. I almost walked away from my husband and two boys because i felt i could not take the pressure of trying to be the perfect mom, wife and housemaid....depression can be very scary at times.
Then you realize how lucky you are that you can find a place like this to share your feelings and find others who understand. My prayers are with you...it does get easier! Just remember you are not alone in this...

 
Old 03-31-2007, 01:56 PM   #4
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Re: Hard time dealing with emotions

Sarah and Willow...in answer to your question, yes, I have had, over the last 4 1/2 years after a serious bout with HIB pneumonia, coxaxie (sp?) virus and strep all at the same time (I do not remember 4 days of my life) and was acutely sick for 3 weeks after and then that whole winter I bounced between pneumonia, the flu, strep (several times for each) and then that May I had my tonsils out because we thought maybe that was the site of of an ongoing infection in my body. After that, my life has never been the same. Previous to that, my migraines, which I have had since I was 11 but usually only with menstration and during pregnancy, became almost daily and I became depressed and had anxiety attacks.

Since then, I have had pleurisy, multiple cases of pneumonia every winter, bronchitis, frequent migraines, fatigue, mood changes, inflammation in my gums and benign lesions in my mouth, joint pain in my fingers, flare ups of neck and shoulder pain.

When I went to see the rheumy, I did show him a spot on my scalp that I have had for at least 6 months that has not healed. I thought it was a reaction to a product I was using, and I do not pick at it. And I wanted to make sure it wasn't cancer or something. The minute they looked at that, it seemed to seal the diagnosis for them. They called it a "lupus lesion".

So, yes, I believe I have met at least 4 of the 11 and may be as many as 6 of the accepted symptoms for lupus and they feel I have it as well.

And willow, I so understand why you would feel like leaving. I have felt like a burden for over 4 years! And even if you have a wonderful husband, it can become very hard on them and tiring.

Thank you so much and I definitely do need a safe place to share. The emotional ups and downs are hard to be sure, especially because I am one of those people who talks things out instead of works it all out in my head or on my own.

It also is hard to hear your liver enzymes are elevated and you need a liver ultrasound and not understanding all about that or what the other elevated tests mean. I think the reality of having really having a condition is setting in. At first I was glad to know iI wasn't a hypochrondriat and then I was glad to know there was medicine to treat it, but then these tests results came back and some of the reality of the fact that there may be some other things going on in my body and that this will be a condition that may be part of my life. Now, I may be in remission, but there will still be medicine to take and eye exams...so I think the reality hit this week.

So, I am realizing I am going to have to find a place to reach out, but a place that believes in looking forward. So thank you and please, keep responding if you have been where I am. I am feeling a little crazy right now!

Thanks!

Diane

 
Old 03-31-2007, 04:28 PM   #5
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Re: Hard time dealing with emotions

Hi Diane!

Amen! I was dxed in 1998 and I think that telling family and friends that your fatigue is akin to the the extreme fatigue that chemotherapy causes will enlighten them that your fatigue is far more "hit the wall, fall flat on your face tired" than their feeling tired is. You are sick and you didn't choose to be. This happened without your vote or assent and they must understand that what you deal with because of it isn't your choice either. It's a bummer, but it's how you cope with how you feel. You do what you can when you can and sit or sleep when you can do no more. The critics can feel free to pitch in and help!! You're not crazy. You're not lazy. You're sick and your body finked out on you without your consent. Bother and bummer!

I feel so virtuous when I have laundry and/or the dishwasher running while I nap!! I recommend it! The secret is to pace yourself, work when you can, sleep when you need to, and to forgive yourself for what you cannot do, or need to rest before you do. It's okay. You're doing the best that you can for now.

Take care of yourself and I do hope you're in remission.

Wishing you well! Barbara
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Old 03-31-2007, 06:13 PM   #6
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Re: Hard time dealing with emotions

Diane, Here's another AMEN. Barbara summed things to a "T". Plaquenil does take some months to reach its maximum effect. FYI, among other things, it gradually changes the pH balance in our cells (acid-to-base), which reduces autoantibody production. (Dr. Wallace writes about this at some length in his hardcover, which is in most libraries & bookstores.)

I also wanted to smack a few friends & one beleaguered hubby when I was at my most tired. Give yourself some time, OK, and think kindly of yourself. Sending my best wishes, Vee

 
Old 04-08-2007, 06:25 AM   #7
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Smile Re: Hard time dealing with emotions

Hello Diane,

I have just replied to a question about emotional issues with lupus in a previous post here - temper and lupus.

Only my thoughts on it but it might be worth your reading.

Take care

goldenwings
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Old 04-09-2007, 06:58 PM   #8
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Re: Hard time dealing with emotions

HI, I can really realte to what you are saying about an emotional rollercoaster.. no one rerally wants to hear what is wrong and they certainly don't understand what we are feeling!! I was diagnosed with undifferentail connective tissue disease and get migrating joint pain and stiffness. Fatigue is a real battle. I have a young family and work full time and I feel frustrated because I have no one that understands how I feel. My symptoms continually vary and I have some good and bad days. When I feel really "jointy" it is so hard to explain to my husband!! Everyone says it is weather realted, however I know it is autoimmune related! Can you relate??

 
Old 04-19-2007, 05:09 PM   #9
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Re: Hard time dealing with emotions

: Hi my name is christie and I too have undifferentiated connective tissue disease. About a year ago my foot swelled to extremes causing pitted edema. First my doc thought it was gout which came back neg. Then I was sent to an orthopedic doc who had a theory of connective tissue disease which then led me to my Rheumatologist. The foot stayed swollen for about two months and then more symptoms started to occur. Chronic fatigue, hair loss, joint pain, muscle pain & fatigue, headaches, leg swelling, etc. I started taking Plaquenil about 7 months ago and it seems to have subdued the pain until recently. I now have issues with dry eye, and redness of the, cheeks, nose, forehead, and chest. I look in the mirror and I barely recognize myself. I work full-time as an Art teacher and Find it extremely difficult to get tthrough the day let alone get out of bed in the morning. I am very depressed and feel very alone. I wish I could get a difinitive answere as to what type of disesase I have. The ANA test was neg. about six months ago. My rheumie will test again some time in the future. I really just need to know that I am not alone and it helps to read your posts.

 
Old 04-19-2007, 06:05 PM   #10
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Re: Hard time dealing with emotions

Hi Diane and everyone.

I can totally relate to what you said about your friend and relationships changing. Your friend means well when she is telling you to push yourself etc. but she just doesn't understand since she hasn't experienced how you feel physically and emotionally. I lost a friend who could not deal with me being sick and ended up screaming at me to get my *** in gear, but fortunately most people are not that extreme!

I'm not presently diagnosed with lupus or RA, since I don't fulfill the criteria, but I have some kind of arthritis and I've been taking Plaquenil for one year. Prior to starting on the Plaquenil, I had fatigue like nothing I'd ever experienced before or since, although I still have bad days now and then. Just getting dressed in the morning was a major project and I was not depressed.

The good news is that after 2-3 months on Plaquenil I felt much better physically and mentally. Hopefully you will too.

Last edited by jenilee70; 04-19-2007 at 06:06 PM.

 
Old 04-21-2007, 09:14 PM   #11
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Re: Hard time dealing with emotions

Quote:
Originally Posted by christie71 View Post
: Hi my name is christie and I too have undifferentiated connective tissue disease. About a year ago my foot swelled to extremes causing pitted edema. First my doc thought it was gout which came back neg. Then I was sent to an orthopedic doc who had a theory of connective tissue disease which then led me to my Rheumatologist. The foot stayed swollen for about two months and then more symptoms started to occur. Chronic fatigue, hair loss, joint pain, muscle pain & fatigue, headaches, leg swelling, etc. I started taking Plaquenil about 7 months ago and it seems to have subdued the pain until recently. I now have issues with dry eye, and redness of the, cheeks, nose, forehead, and chest. I look in the mirror and I barely recognize myself. I work full-time as an Art teacher and Find it extremely difficult to get tthrough the day let alone get out of bed in the morning. I am very depressed and feel very alone. I wish I could get a difinitive answere as to what type of disesase I have. The ANA test was neg. about six months ago. My rheumie will test again some time in the future. I really just need to know that I am not alone and it helps to read your posts.
Hi Christie, It is really nice finally "meeting" someone who has the same undifferential dX as myself. I Have been battling this condition for over a year and I have good and bad days. I started out with a dx of a piro virus.... and I have had fifth disease (all related from an arthritic point of view) a few years ago. The problem that is most stressful at the moment is my gastro problems, fatigue and on & off joint pain. I am now going to my GP to refer me to a Gastrointerologist. I have a feeling however, it is all connected to my undifferentail connective tissue disease. I am not on any meds and have been wondering about the benefits of Plaquenil. I have no idea what is related to my condition and what is not anyomore. My spirits are still up and I am putting on a good front for family and friends, however inwardly I am scared, angry and frustrated about the lack of a diffinitive diagnosis. My Rheumatologist is great and will see me as needed. She claims that not have a definitive diagnosis is good.... I hate to complain but I feel as Though something is always wrong with me physically. I go to the gym regularly and try and walk daily but my stamina has definately decreased... People really have no clue what we go through!! It is nice to know that there are others out there who understand.

 
Old 04-27-2007, 10:25 AM   #12
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Re: Hard time dealing with emotions

Janmar and Jennilee,

I completely understand your pain and frustration. I have just about the same things going on as you both, and am really having issues with my husband understanding my un-wellness. I go to see my Rheummy on Tuesday and go over my most recent test results. I have + ANA (it has been 1:640, 1:320 and 1:1280) in the past and everything else Negative. I have severe reynauds of the nipples (rare, but I have it quite bad), Sever joint pain in the hands, feet, knees, wrists, ankles, and overwhelming fatigue. I have also been battling memory problems, concentration problems and other cognitive difficulties. I also get migraines quite often. I have also had a couple of weird rashes, and 3 blood clots in my legs. Dr. is thinking Sero-negative lupus or RA at this point. I am probably going to start plaquenil when I see him next. I had x-rays taken (per the nurse--mild arthritis in the feet) and a lymes disease titer that is pending. I am now on prednisone for a horrible flare that started a couple days ago. I cannot tell you how wonderful I feel on this steroid. I have not felt this good in such a long time--it is incredible. I know steroids are not good for you, but If there was anyway for me to be medicated so I feel this great--I will be so happy. It has really made me realize just how unwell I have been feeling lately. I forgot what it was like to feel somewhat "normal" My ffatique is so much better, and the arthritis pain is very much improved. I literally called the rheummy and said he had do to something, because I was not going to make it through the day--I was in that much pain. I understand how you feel and how hard it is for your family to believe your hurting so bad when you look so good. It is very frustrating. I am still in limbo waiting on a diagnosis or some help of some sort. Hope you all fell better soon. Take care!

Kelley

 
Old 04-28-2007, 03:35 AM   #13
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Smile Re: Hard time dealing with emotions

Hiya Kel,

It is so good to read an uplifting message like yours regarding a medication.

Thing is though Kel, steroids affect different people in different ways. Some people have a really bad time with side effects and others get on ok with them, with no or few minor side effects. I have always heard the main problem being one of weight gain. I can honestly say that yes, I gained weight initially and had a moon face but I was on massive doses for a long time, but as soon as I tapered down, my weight went down and my moon face went too. I would see if and how they improve things for you before making a decision as to whether they are good for your or not.

This is only my personal opinion. I think that we have to give things a fair go and see how they affect us. This is why I think coming here is such a good thing to do. Getting opinions of people who have actually taken and do take this medication regularly is the only way to get an unbiased opinion I think.

I read quite a while ago about someone bemoaning the fact that they had read that steroids put so much weight on and so on. When I looked into what this person was saying, I found out they were talking about "anabolic" steroids and had been reading about this instead of therapeutic steroids. This is the danger of reading articles and things, some of them are even so out of date too. This is why I said previously it is a good thing to come here and get the opinions of others.

I personally have been taking them for over 30 years. I take them every day. I started on massive doses, went to smaller doses and I am now at a maintenance level. If I feel unwell, I increase them until things improve and then drop them. I try to be on as low a dose as possible so that when I increase them, I really feel the benfit. I then taper back to my maintenance dose. I do this with the permission of my doctors'.

Steroids actually saved my life and I can't praise them enough.

I hope you continue to feel better.

Take care

golenwings
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Last edited by goldenwings; 04-28-2007 at 03:39 AM. Reason: misspelling

 
Old 04-29-2007, 05:51 AM   #14
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Re: Hard time dealing with emotions

Goldenwings,

Thank you for taking the time to post back to me. I truly feel better than I have ever felt. I am hoping that Plaquenil can be of some benefit for me so I won't need to be on steroids to feel better. I have an appt with my rheummy on Tuesday. I am glad to hear that you have found some benefit and relieve from medication for your pain. I am new to all of this and just starting out, but hoping to get my prior life back so I can enjoy myself and my kids. Sometimes I feel so guilty having to tell my kids I don't feel well and can't play outside, or that I need a little nap. I truly feel like I am 80 years old some times. I just want my energetic, healthy self back, or as much of it that I can re-claim as possible. Thank you for all of the good info. Take care
Kelley

 
Old 05-28-2007, 06:32 PM   #15
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Re: Hard time dealing with emotions

Hi Kelly, I completely understand what you are going through. I just started on Plaquenil last week and so far so good, no bad side effects. I understand it takes awhile to work.... I also got a steroid injection in my backside which seems to have helped mask the symptoms to some degree. The key for me is learn to pace myself. It is easier said than done, as I too am a high energetic person who enjoyed to exercise, play with the kids and be highly functional. I guess we all have to fine a way to adjust to our "new normal". When I am feeling good I am ok emotionally, however when I am having a bad day, I can get so depressed! My husband is trying to understanmd and is helping more around the house. I still do not have a diffinitive diagnosis besides UCTD....Whatever it is, it is frustrating dealing with the ups & downs of this condition. Hope you are getting some help. Regards, Janmar

 
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