new member and not sure of things anymore

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pbjsammich
Regular Member


Date Joined Jun 2012
Total Posts : 65
   Posted 6/9/2012 1:41 PM (GMT -6)   
Hello, I am a new member to this site and I was reading the site rules, especially the one that said don't be afraid to post how you are feeling-good or bad. Well, here goes...
I was diagnosed with SLE and RA this past November and both are advanced. I literally woke up with these two things so I do not have the "pleasure" of growing into my symptoms or diseases. The day the rheumo doc told me my diagnosis he put me on methotrexate and folic acid and told me I wouldn't see results possibly until the next few months, he was treating the RA first so I could get to moving around then go after the SLE. I started seeing results in a week. Things were going ok until a few weeks ago I noticed I was getting tired and beginning to sleep and lay around more and getting winded easily.
My last appt was also lab time and a few days ago his office called and told me to stop taking the methotrexate, it had was causing a drop in my wbc. That number has always been under the minimum since the beginning of my nightmare. It dropped even more. I was supposed to take my weekly does that day of the call. Well, later that night I noticed I was beginning have problems dealing with the constant pain and sleep(not that I can sleep) never came. My hands are starting to swell again and I know the dizzy spells are from the low cell count.
I hate my life now, it is such a drastic turn from what it was. This past year like I said is a nightmare. I lost so many friends because they thought I was lying about being sick or trying to get attention and did not want to be associated with someone like that. My best friend is upset with me although he will not come out and say it because I cannot go visit him, I keep wondering when he will tell me to get out of his life as well. I feel awful because I cannot work so of course no income-no money to pay the bills and I feel like such a burden to my parents. I keep to myself since it is easier that way rather than explain why my arms do not move like they should or why I cannot be in the sun.
I was told things will get easier, but this past month it seems like they are getting worse. I'm not due to see the rhuemo doc until next month. Is this how my "new" life is going to be like now? Nothing but pain and more stress??? I do lie and try to act like things are good. Although I do not lie well. It actually makes me tired. I hate to be such a downer and I do apologize for it. I never used to be this way.
Thank you to whomever decides to read this

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/9/2012 2:05 PM (GMT -6)   
Sorry you're having to deal with this. It does get very frustrating with the pain and all.
A year ago I suddenly became ill almost overnight. So I understand the frustrations you're going through. Life is just flipped on it's ear for us. If you're patient the doctor will be able to find a way to get the pain down to a bearable level. Most days my pain level is a 3 out of 10. Some days lower, some days higher. I take a daily anti-inflamatory, a DMARD, and an occasional Tramadol. Today's a Tramadol day thanks to my grumpy hands.

Do you have Disability Income available where you live?

Can you get the doctor to phone in some type of painkiller for you? If he's willing, ask if you can handle some predisone and plaquenil, too. There are more biologics available out there to help. Sometimes it takes some sampling to find the right mix.
Joy

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/9/2012 2:49 PM (GMT -6)   
As a vet you should be able to get treatment through the VA.

If you take good care of your health you should live to be a ripe old age. :S
Joy

topaz731
New Member


Date Joined Jun 2011
Total Posts : 14
   Posted 6/10/2012 1:38 AM (GMT -6)   
pbjsammich, your post touched me very much. I have felt many of the same things and have gone through many similar things as you in the past year myself, being diagnosed in March '11. I was active in many sports my entire life, especially competitive horseback riding..and that immediately changed. I had to sell all three of my horses- I couldn't work to take care of them. Friends were amazing in helping me move them for sale, but it was heart-wrenching. As silly as it sounds to many people, I still cry and have dreams about getting my favorite back. But they were my life for so long. I also had to give my dogs away as I went to live with my aunt straight out of the hospital, out of state. Thankfully, I was able to have a friend take my oldest dog for about six months, so I've actually been reunited with her. I honestly don't know what I'd do without her- she's pretty much the best part of my day. I can't walk her very much these days, but I love taking her to the dog park. But I know what it feels like to have everything be ok one day, and the next it's a disaster. I had been feeling bad for a while, but I also got Lyme, so it was all a little blurred together. But one day I was at work, and the next I was in the hospital, and three days later I was going into kidney failure. It is still very upsetting to think about what I used to be capable of and now I think about how I'm actually going to be needing a stool at work soon, because I won't be able to stand up for my whole shift. I'm totally embarassed. I haven't even turned 30 yet, and I feel like I'm 50. I feel like I aged those 20 yrs in just this year alone.
And this brings me to friends.... a lot of them surprised me, in good and bad ways. And honestly, so did family. Some of the people who came through for me the most were people I hadn't seen in years, like my father or friends from highschool. And some people were those that had been the ones I was in the most frequent contact with that I completely fell out with- my mother, riding friends. It was very interesting. But at the same time as lupus being beyond frustrating, it also gave me a new perspective on everything. I don't take things as seriously as I used to, I don't stay upset as long about things as I used to, things don't stress me as much- it's very odd actually...at a time when you would almost think the opposite, I'm actually feeling quite zen. :o)
And as for living to 60, we'll see. I think the first several months actually felt the longest. I spent my first month in the hospital. But things, as impossible as they can seem- did get better. I remember feeling quite down around my birthday last summer, and sobbing in the car after a dr's appt with my dad. I had just completely plateaued as far as recovering physically- I was still puffed from steroids, I couldn't walk well- I had a lot of pain in my legs (cymbalta worked miracles for!) and all over my back- from the moment I woke, up I was miserable, and basically wanted to cry. It was hot as hell, humid, I felt sick, achy, and looked bad- and now was beginning to get depressed. I felt like this would never pass, and - what was the point?? What is the purpose of going through all of this, for something so meaningless? (ok a little melodramatic...but still..). I wasn't working, nor could I for several more months, I was living rent-free with my aunt for more than six mo, and my father helped me out significantly without which I would not have had many things. I certainly appreciate feeling like a burden, a Debbie Downer- and apologizing...a lot. I still always seem to do that. It's like when someone asks me how I've been- I'm like, ok- should I be truthful?....or PG-it for them. When I finally have become more comfortable at work telling people about it, now that more people have gotten to know me for me- and I slip in the lupus part- they get a bit of a glazed, far off look on their face. "oh..". Sorrrry! Didn't mean to burst YOUR bubble. lol.

So- I hope by me sharing a bit of my experience in return, you feel a bit better about your own. I haven't shared so much on here before, but like I said, I felt like we shared some similar things in our stories. I know it won't "fix" it, but know you're not alone.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 6/10/2012 8:23 AM (GMT -6)   

Aw Sweetie, I’m so sorry to hear you’re doing so poorly. Sometimes it helps to vent and you’ll always find someone to listen here.  I agree with Joy that you need to call your rheumy and either get him to fit you in or call in a script. I used to be scared to death of narcotics, but over the years I’ve found that I can take them only when I need them most and have never been Jonesin’ for them. Also plaquenil is a rather innocuous drug that takes months to work, but I’ve been on it for years and certainly notice if I’m not. There are many drugs used to treat SLE and RA, but it takes time to find the right combination for you. Then out of nowhere you have to change again.

I feel so badly when I read of you women who are hit so early in life. I was active duty Air Force for 7 years, started running in basic and ran for the next 20. When my knees gave me trouble I took up swimming. I’ve had lupus 10 years (I’m 54 now) and sometimes when I see a runner I still miss it. I also got a BS in medical technology, ended up in a high power job with lots of travel and I no longer have contact with any of the folks with whom I worked. I LOL at the comment Topaz made that when people ask how you are and the moment you’re truthful they get that glazed look…sorry to burst your bubble!

Anyway, regarding your male friend you are afraid to lose, 2 bits of advice: tell him exactly how you feel and have him read the spoon theory on www.butyoudontlooksick.com it’s something everyone with lupus should read. Spoon theory is about half way down the page.

I’ve been hospitalized a few times, 3 times with pneumonia, septic shock, and in a coma 2 months. Lupus also loves to dance in my brain so with the help of anti-depressants and anti-anxiety drugs I can cope. My last piece of advice which was given to me a few years ago on this forum: think of each flare (bad event) as a bridge. Sometimes the bridges are short , it’s easy to see the end of the bridge, and can be quickly crossed. Some bridges are very, very long and there’s no end in sight, but the end is there. I haven’t come to a bridge yet that I haven’t been able to cross. Hopefully you’ll be able to cross your bridges too. Keep us posted Sweetie. Love, Butterflake   aka Donna


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/16/2012 8:42 PM (GMT -6)   
It broke my heart to give all of my beautiful capris away this summer. I used to live in shorts, capris and tees the moment it got warm until I was too cold in the fall.
Now I wear shorts only in the house. If I go out I have to change into jeans and sun shirt.

Most of my friends have drifted away too. Usually I just answer, "as good as can be expected" if someone asks how are you today.
Joy

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/17/2012 2:05 PM (GMT -6)   
Have you checked out coolibar.com or sungrubbies.com?
I think rugged wearhouse and Acadamy sports carry columbia clothing.
My problem is they don't make them big enough for me. I have to wear a man's sunshirt as a jacket for coverage. Also I have a wide brim woven hat for my head and face coverage.
My mother keeps asking me if I'm going to go pick cotton now when I'm dressed up to go out in the sun. LOL!
Joy

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/17/2012 5:54 PM (GMT -6)   
I had to get my haircut to go with my hat. It was flatting it down in areas. Now I have a haircut that goes well with my hat wearing. If I'm scared of mussing it too much for a special activity I wear a special head scarf I bought from coolibar. I look like a sheik when I wear it and get some odd looks down here in the south. LOL! I did have one elderly man come up to me and ask me why don't I wear a sunbonnet?

Coolibar does have some very nice sleek styles in their hats though.

It's hard to believe how different my life is now compared to before Lupus.
Joy

topaz731
New Member


Date Joined Jun 2011
Total Posts : 14
   Posted 6/23/2012 8:12 PM (GMT -6)   
Thank you to everyone who wrote such kind words in response to what I wrote before. I always feel silly when I share my stories, and then here myself complain and then hear everyone elses as well. It makes me feel very grateful for what I had as well. It's so strange how lupus can affect us all so very differently, and so very severely.
 
It took me about a year before I could let a large number of people know I was sick. I was very embarassed about the way I looked for a really long time because of the steroids- and because over half of my hair fell out, and I also felt I had a lot of explaining to do for basically falling off the map for such an extended amount of time. I in NO WAY like gaining any sort of attention for being sick or like sympathy, so I was very very hesitant.  I did it at the same time I did the DC Walk for Lupus Now. So, I put a really positive spin on it. A lot of people I hadn't guessed were super supportive and reached out, and more than you would think already know people that have lupus. You'll know when the right time to tell people is. It was right for me then. It could be much much sooner for you. :-)
 
And yes- sun without suncreen (like spf 90) makes me break out of my face in little red dots. And it can itch. The dots last a while. I call it my pin-cushion face  rolleyes

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/2/2012 10:00 PM (GMT -6)   
Sorry you lost your best bud. (((((hug))))

I've lost a lot of friends thanks to this illness. They just can't phantom how I can feel so sick and look so well. They thought I was a hypocondriac and a complainer all the time.
I'm just now getting my family to understand my illness.

Hang in there. Maybe he'll change his mind later. If not, maybe it was for the best despite the pain it causes you.
Joy

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/9/2012 1:09 PM (GMT -6)   
You need to talk to the doctor about the sadness. I was feeling so down because of all of the stressors in my life lately and I told him what had I'd been feeling.
He put me on paxil. I feel lighter and not as down.

After plaquenil comes cellcept and MTX. Then the biologics...
Joy

LAWCHICK
Regular Member


Date Joined Jul 2010
Total Posts : 468
   Posted 7/10/2012 8:48 AM (GMT -6)   
PbJ I am so sorry to hear about how sick you have been and how hard this is all for you. I understand whats its like to feel like people just dont get how you feel. I always worry people will think I am lazy so I tend to push myself extra hard.

Really the only thing I can say is that the one thing I am greatful for in all of this to have a diagnosis. I spent years not knowing what was wrong. I know you said you just woke up with all of this but atleast you were able to get a proper diagnoses and therefore start treatment. I know it sucks being diagnosed with a chronic illness but its even worse not knowing whats wrong. I guess thats one bright spot in all of this and its always a good thing to atleast find a positive even if its a positive that you dont want.

Im sorry about your bestfriend being upset with you but all you can do is your best. Its not your fault that you are sick and they should understand that.

Hope you feel better soon.

Triple L
New Member


Date Joined Jul 2012
Total Posts : 8
   Posted 7/13/2012 9:25 PM (GMT -6)   
I want to say that this part of your journey is the hardest part. I was diagnosed with SLE one year after the initial symptoms began. I had received my license to practice law 30 days prior to my first symptoms. At the time I had a young son and had no prior health concerns. In fact, I was a three sport athlete. When my life began to be something other than what I planned the anxiety became panic and for awhile I even found comfort in denying the whole thing. The fear is the hardest part in my experience. Try to be you in the midst of this. Don't be a weaker person just because you are different. Remember who you are and you will be that person no matter the circumstance. If you are sensitive to a fault then now is the time to toughen up and fight through the tears. You have a life to save! I have been chronically ill with various types of SLE for 12 years. The only part of my body that has not been under siege to date has been my central nervous system. There are many shocking and pitiable tales that I could share with you but what I prefer to do is to be an example for you. You will be OK just choose to be. I have given many good years over to fear, denial and depression. Stand up and walk toward this different life and choose to live. Get a journal and let the stuff that you can't use set on those pages for later reflection. Today, you can only use your loved ones, your intellect, your faith and competent healthcare professionals. You will be OK!

pbjsammich
Regular Member


Date Joined Jun 2012
Total Posts : 65
   Posted 7/14/2012 10:35 AM (GMT -6)   
Thank you Triple L,
I am trying, since I do not have any type of medication in me or painkiller, it's a whole lot harder to see the good in things. I just came back from my SS exam. I forgot to tell the doc about my sun sensitivity, depression. So I probably messed any hope up for getting my claim to go through. I was having a hard time thinking and trying to get my words out and I noticed I am slurring words.
I used to be so active-being in the military and sports and other interests. Now I'm this useless bag of bones. I can't do much without my affected parts putting me in major pain and sending me to bed for days. I was that way with the drugs and now, it's worse. I'm not seeing a useful future and not seeing myself of any use to anyone now or in the future.
I did find in that exam I now have my lower spine to add to painful areas and probably my hips. I'll be in denial about the hips for now. All I can say is I am glad that doc was behind me when she poked on my lower back. I'd probably have hit her, or tried to.lol
Time to fold laundry. I like getting the towels right from the dryer, it feels good and maybe I'm ocd but I like folding towels but they all have to be folded the same way.lol :-)
pbjsammich :p
RA SLE
Acid Reflux/GERD

Triple L
New Member


Date Joined Jul 2012
Total Posts : 8
   Posted 7/14/2012 2:44 PM (GMT -6)   
Pbjsammich,
You are going to be alright, I promise you! It is good that you are able to find joy in simple things like folding warm towels. We are not cursed to die miserable and misunderstood. We are challenged in somes ways but better in many others. Don't you value your time and loved ones more than you use to? Don't you care about others more than you use to? Don't you know yourself a little better than before? For me, the physical challenges have given me a greater spiritual connection to other people, other places and other things. Truthfully, I'm not caught up in the rat race anymore nor do I feel the need to be more than what I am. Lupus has liberated me in a way that counters the disability. it's a hard sell, I know, but try to be a modified version of the person that you use to be. Get ahead of the pain, rest more, eat right and believe in yourself. You already know what has to be done for you to live with Lupus and while it is difficult you have to.
I have stories but I don't want to spend my time with you extracting kindred sadness. I want you to envision tomorrow dare to plan the rest of your life and go for it! A part of me finds this forum scary and another sees an opportunity to help someone (even if it's only myself) continue believing in dreams.
It is not easy but it's not impossible either. So, it takes more time to do one thing or another. The only difference between us the chronically I'll and the chronically healthy is that odds are we are more consciencious and thoughtful. We are more connected to the universe even if it is a connection born out of desperation and loneliness. Be mindful of those who are defenseless and realize your strength. Study Lupus as though it were the greatest test of your life. Become a professional patient your mind if unaffected is your greatest attribute when you are feeling as if you can't make it. Think, think, think and believe. It's been twelve years for me and I doubt that many hear have had more trauma but if I had had one person tell me to quite crying and fight quite a few years may have been easier to bear. I'm trying to be that for you or anyone who needs me. My family cried with me, my friends cried with me and my Doctor's loved seeing me. The cycle can become depressing and destructive if you let it. My son was nine when he looked me in the eye and asked, "if you die whose going to be my Mom, Grandma?" then and there I said and believed with every thing that I was going to live. It's been twelve years of thinking before acting and introspection but that can't be a bad thing. Your mind and body are so connected that if you don't believe that you'll be alright you won't. There was a legion of us passing in and out of the waiting rooms at the Doctor's offices and those that gave in to Lupus have been eulogized. There is a handful of us left and we don't associate personally but we have a bond. We are pretty similar in our approach in that death would interfere with our plans. You have Lupus, and even when it hurts the most, it does not have you! Fold towels today and find something else tomorrow. I don't even know you but I do know you will be fine, I can tell! Can you?
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