Im not sure if im in the right forum or not oorrr... If this is too detailed for an online forum but i am really in need of help.It has been well over 6 months since I was diagnosed with lupus. It has been quite a roller coaster and I have been on a downhill for a while now and not sure how to get back up.
(Alil back story)
I lost my mother to breast cancer a few months b4 I was diagnosed, this was really difficult for me because my mom was everything and I had 3 other siblings to care for now. (Me being the oldest and 2 having autism). During this time I went to the doctor for Severe joint pain that I had been having for about a month. At that time I was 20yr old and a very active person, I ignored the pain for weeks but it's only became worse and started to affect things I do. I was refered to an rheumatologist which took 3 months to see to get the news that I had lupus(Which was affecting my kidney). Since then I have been different medications (I don't enjoy taking) and gone thur a load of test. I have gotten better as far as my kidney but the flares are still very hard to deal with.
I am 21 and I feel so lost in my life right now. I was a culinary art major and had plans for myself but recently I have lost interest in all of that. I am not in school, Im not interested in culinary anymore much less anything else. I recently quit my job because I could not do the work due to the lupus. I was so bad that I had to moments at work where i had to sit down or I would pass out. I have filed for disability and I'm am now awaiting their answer. I'm very depressed and all I do is lay in bed and sleep. I feel the pain and I try really hard to help in the house as I can but I can't do much, sometimes I feel like I'm just being lazy so I push myself only to spend a few more extra days in bed. The good thing that has happen for me is meeting and marrying my husband, who's has been there for me thur everything since this started. Nowadays though I feel like I'm stressing him, when I'm in pain I take it out on him and my emotions all over the place.
I am not sure where to go at this point in my life. I feel as though I'm jus wasting it in my bed. I no longer know what I want to do. All I know is I want to be happy with my husband without worry about work,money,lupus,or stress. There are many other things that are happening to contribute to these feelings. I don't have a lot of people I can talk to other than my husband but I don't want always be a downer when I am with him. I really need help because i don't know what to do.
Sorry this is long... I thank everyone who takes the time to read it.
First I would like to welcome you to this site. You are young. I too was first diagnosed when I was young...14. Everything was a big blur for me back then. I think that one of the things that helped me to get through it all was a positive attitude. I am so glad that you have a wonderful husband...so do I. I can understand that you don't always want to talk about Lupus with him so this is a good site to talk to others as well as at times with your husband. Are you being treated with medications? When you said that your emotions are all over the place and you sometimes take it out on him....prednisone did that to me.
I hope that you will not give up on your dreams!! Pain will cause you to take a temporary step back, but once the flare passes, go back to school. I truly believe that the happier you are with life, the more you can overcome your disease. Depression is very common with Lupus...I was fortunate enough to avoid that. Losing your mother does not help with how you are feeling right now. I am so sorry for your loss. Try to think...this is temporary. I will need to live with Lupus (for what I know it is never just gone....47 years for me!). But you do not necessarily spend your whole life in pain. I had bad arthritis pain when I first got Lupus. I began to excersice as soon as I wnt into a remission (18), and when my flares came (@3 or 4 more), my arthritis was not nearly as bad. I also had kidney involvement. My kidneys hung around for about 28 more years. I did get a transplant in 1993. I currently am still teaching, have 2 grown girls at home and a wonderful husband as you do. So you have a full and wonderful to be life ahead. This is just a bump in the road. Hand in there!!
welcome to what many of us call our cyber family.
i came to this site for support.
now i am happy to be part of the support system.
please take some time to read a few of the older posts.....
they are our personal experiences with lupus.
i also am unable to work.
i also have had very down times.
unfortunatelly, i also have lost someone. my sister was murdered.
i have learnt that lupus does effect parts of our body we would not imagine.
also lupus can effect different people in different ways.
one of the main problems i have is inflamation.
i believe this inflamation is through all of my body.
therefore .... it makes sence that i have inflamation around my brain also.
i use many different medications to control my inflamation.
one that works well for me is depression medication.
i use it not because i am depressed......
but because i need this medication to lrt my brain function correctly.
please talk to a doctor about this type of medication.
it is also a fact ...... that people with constant pain do go into a state of enforced depression.
this means you act depressed due to your medical condition.
add all of this on to the stress you have had to face recently........
no wonder you have trying days.
I too want to welcome you to the WHL family. So often Lupus shows itself after a very stressful experience such as the loss of your mother. Those before me have given you some wonderful advice but I had to chime in to make sure that one piece didn't get lost.
Even though you have enough going on in your life that depression would be VERY normal on its own, sometimes Lupus changes the chemical make-up of the brain and depression can happen because of that. MANY of us are on or have been on medicines for depression. Some for a short time to get over the initial shock and sadness over what has happened and others for longer periods because the Lupus made those changes in the brain. I think one of the first things you need to do is to go talk to someone about what is going on with you and see if they think a trial run with an antidepressant might be in order. It doesn't fix things but it can help bring you out of the fog of death and this disease long enough to be able to see the good things that are still around. Maybe they can get you to the point where you can find the joy in life even after all of the hard times you have endured.
Seeing help, be it counseling or meds (or a combination) is not weak. Only a truly strong person can admit that they can't do it all alone and are willing to put out the effort to find the help they need. Until then, and for as long as you need, we will be here to help you on your journey
Once again, welcome to our WHL family. We are glad to have you
Neisha, your post isn't too detailed at all. Part of the purpose of this forum is to provide a place for you to say what you need to say -- however long and detailed! -- and get the support we're able to provide each other. And I am so sorry to hear all you've been through and that you are dealing with depression right now. Like others have said, I'd encourage you to find a counselor who might be able to help you work through this illness and the other stresses in your life. When I got sick and was seeing doctors what seemed like every other day and my stress level was skyrocketing, I started seeing a chronic illness counselor, and she helped me come to terms with things and figure out how to manage the difficult emotions I was having. It's something to think about.
And like everyone has said, welcome to WHL. There are good folk around here.
Thank you guys so much. All of your information has helped me to see that I'm not going crazy or anything. Lol For a while now I been feeling like I'm jus being lazy, or I like being in pain or that somehow this all my fault. Everything has happened so fast losing my mom then lupus.. I been pushed into this situation I'm was definitely not ready for. I have always been Alil depressed. My mom was a single parent I grow up way too fast helpin my mom take care of everything, I couldn't be a kid. But I always had my mom to lean on when things got really bad. Now it's gotten worse and I'm thinking about getting anti depressants which scares me cuz it make me feel Alil crazy... But I feel even more crazy without them so it's lose/lose kinda thing. I am taking plaquenil now (which I hate) it works when it want too. I don't take it regularly which maybe y. I was taking prednisone but switch it to the plaquenil because the thought of a steroid scared me a lot and the side effects sound Sooo bad. I havent been to the doctor for a while now because I no longer have the insurance under my mother. If I could I like to go to counseling but I don't know where to even look. I am not used to talking and telling people details about my personal life that's why this forum is Alil weird to me (no offense) but I'm kinda ready to open up because all this stuff i have on my shoulder is getting way too heavy.
Ooh, Neisha, with the Plaquenil, you really have to take it every day for it to be effective. It's one of those drugs that slowly, slowly, sloooowwwwly builds up in your system, and then one day you're like, "Whoa. I think it's actually kind of helping." Of any drug you might take for lupus, Plaquenil has one of the most benign side-effects lists, so I'd really recommend taking it every day, like it was prescribed. Out of curiosity, what do you hate about it?
As far as counseling goes, I found out about my counselor from my internist (my primary care doc). If you live in a larger city and you have limited resources or no insurance, if there is a local college that offers clinical psychology or clinical social worker programs, you may be able to get greatly reduced rates by seeing a counselor who is still in training. My counselor is a licensed clinical social worker, and she is very, very good at what she does.
And I totally understand the weirdness about opening up to people. That's actually why I like this forum-- it's anonymous. People in my real life might not understand my illness, what I go through, or it may just wear them out to hear about it too much. So I find that having a relatively anonymous forum to share the stresses and get the heavy stuff off my shoulders is super helpful. I hope you find it helpful, too, because it's no good to let that stuff weigh you down too much-- you need an outlet!
most of the medications we take need to be taken regularly.
taking them only occasionally does not allow them to work properly.
we take low dosages, so as to limit the side effects.
these low dosages need time to build up to a workable level.
if you do not take them often enough..... the body will remove them quicker than you replace them.
i too do not like taking medicines.
i especially do not like the idea of poisoning my self.
but if this is what it takes to keep me alive............
i take all my medicines as prescribed by my doctors.
not to do so would be .................
Just to expand about the plaquenil. ... You have to take it every day for 3-6 months to get the full effect. As was said above, if you don't take it every day it won't work
Welcome to WHL!
You have found the right place to be able to open up and vent. We've all been there.
My mother-in-law's passing was the trigger that really brought my symptoms to the surface. Stress can do that to you.
As others have told you, you really need to take the Plaquenil every day for months before it becomes noticeable that it is helping.
I can't take any steroid, so my next step up on the meds was to take Methotrexate for a while. It has side effects that are no fun, but it did help.
I hope that you find ways to cope and that life settles down for you soon. We are here to help if we can.