View Full Version : Hello from the Great Smoky Mtn's

06-04-2008, 01:14 PM
Hello to my new family, My name is Becky, I'm 39 and was first diagnosed in 1996. I'm a mom of 2 boys 16 & 18 and the step mom of 2 girls 16 & 32, plus a (step) grandmother of a 3year old little boy. When I was first diagnosed I went on with life, very active and loving my job of taking care of others with disability. Never dreaming that my life would ever change, and I would become the one that needs help, then my flare ups came more and more and I had to quit my job due to the joint pain, fatigue, & sun-sensitivity. I'm on and off Prednisone. I took Plaquenil for about 2 years and it got to where it wasn't doing anything other than the great side effect of the bathroom runs. Now I've been on Methotrexate for the last 6 months but my dr. is talking about trying something else. I feel so bad for my family they have been so supportive to me and all I want is to support them back but with the bad days out numbering the good I find that just ain't happen any time soon.
I've been out of work for 2 years this past May and waiting on our great federal goverment about my social security, (well it took me from May till Aug. with lots of tears and prayers before I would fill) to make up their minds. There just seems to be no end in sight, the bills keep pilling up and my husdand is doing the best any man can do. I JUST FEEL USELESS.
The only saving grace is I know God loves me and is walking with me thru all of this. If I didn't have my faith I would have gave up long before now.

06-04-2008, 02:29 PM
Hey Becky..

Hello sister...

First of all useless is a useless word, so throw it out. We are not tools to be used. Wife, Mum...children two 16, 18. 32 and a Grandmum.... I would say you are very much needed, love and cared about...and no doubt filled many years and still do with support, love for your husband and your children...

So, I will pretend I never read the word useless.

Still waiting on your benefits..unclear. If so, have you hired a Social Security lawyer...if not do. BY law they can only charge a set fee if you win...like our life is a game. But anyway the fee will come out of the retroactive benefit.

If you have credit debt, pay one off at a time...call and ask for a lower rate interest.

If you want some advice on debt I will be more than happy to suggest some things...ideas.

I know how you feel, wanting to give up..but we don't, we know better. Just take life in small increments. If it has a solution fix it, if not move on and worry not over those things...

Starting small will help you to feel in control again..one thing at a time....

God indeed loves you, this I know too...

Be well...

06-04-2008, 06:48 PM
Hey Becky. I'm sorry you're feeling like I do too. It stinks to feel so "useless." I completely understand. I've always been a Supermom and Superhomemaker wannabe. The good thing is that we don't depend on me for financial stability. The bad thing is I just can't do much these days and I've got 4 kids- ages 10, 5, 4, and 7 months. Thank IPU(the invisible pink unicorn who is my favorite pretend God/dess and I'll invoke her name regularly) that my husband works from home of we'd be in really bad shape.

I have always been so bad at accepting help from others. I hate to admit that I can't do everything I used to. I try, and then I pay for it.

I hope you go into a remission soon and feel better.

06-05-2008, 08:18 AM
Hi Becky,
My name is Lauri, and I am new to this forum as well. I am 40 and jus trecently diagnosed, however, I have been really ill for several years. When I first got sick, I continued to work. then I was hospitalized a few times, and left work. Started to feel better, went back, flare-up then left again! I was denied disability twice, as I was yet no officially Dxd. My neurologist did write me a great letter (he had been my main doc for a couple of years), but we had a falling out and he refused to send the letter!! Nice, huh? Anyway, beginning last summer, I started to feel GREAT! I became a house inspector - was sooo excited!! Then, BAM it hit me like a ton of bricks in January of this year. On and off Prednisone, when I would taper off, the symptoms would come back. I was REALLY swollen and in unbelievable pain this flare. Finally, I saw a new doc in March, and she finally gave the official lupus Dx. My symptoms have never beeen the issue, but the neg. ANA. ALL my other blood work, though, has been off (sed rate and CRP really high, amemic, etc). Anyhow, be aggressive with the disability - thats YOUR MONEY!! I am going to have to apply again, as my hom is JUST coming out of foreclosure (my huband was laid off for a bit - back now thank GOD). I also have a very strong faith, and have to believe that God will not give me what I cannot handle. I have to put things in his hands - my pain, frustration, financial stress, etc). When I truly try to do that, I feel mch better emotionally. He walks with all of us..
Good to read your post

06-05-2008, 01:16 PM
Hi Becky;
Your road traveled, with this disease, is much like the road that many of us have also traveled. We've learned that we can no longer do those things that we were once so easily able to do. However, what we've learned is that we can do different (and often, much more rewarding) things and/or in different ways. As Oluwa pointed out, this illness does not make us "useless", it just makes us "adaptable" and we find creative and innovative ways to accomplish those things that we want to accomplish and to do those things that we want to do.
We are so much more than this disease. Many of us have discovered marvelous things about ourselves BECAUSE we have Lupus. So, I have to agree with Oluwa, you are not "useless", you are now a person who can adapt and change to any situation because, at your core, you are loved - you are valued - you are important!
If, at any time, you start to doubt these things about yourself, or you start to become overwhelmed by this disease...come here to us and we will put you right :lol:
Welcome to our family!

Peace and Blessings

06-05-2008, 01:21 PM
Hello Lauri;
This is a special "hello" to you because it gives me an opportunity to type that name :lol:
We are all too familiar with the Relapse/Remission syndrome of this disease. We have periods of time when we feel good and we are ever so hopeful that it will last. Then, as you described, IT hits us like a ton of bricks and we are, often, laid flat :cry:
Many of us, also, have the same issues with Prednisone as you. I'm glad that you finally found a doctor who made the diagnosis and who is, hopefully, treating your symptoms. That can be a very important issue when trying to manage our lives with this disease.
I'm glad that you joined us! Welcome

Peace and Blessings

06-07-2008, 02:00 PM
Hello and thanks for all the in put,
OK I'm not useless :? , how about if I say I'm sick and tired of being tired and sick so much and so often. :( As far as the social security goes, I was turned down once, hired a ss lawyer, got turned down again and now I've been waiting for a hearing. How long does it take to get a hearing and is there anything I can do to speed this part up, Ive heard of people waiting 5 years on a hearing.

Yes thats been the hardest part of all this, going from supermom and supermamaw, to unable to do for them the way I always did. It helps alot just hearing from others that are going thru the same as I am. And yes accepting help has got to be the hardest part of all this for me as well.
:D Thanks to all I feel so blessed to have found this site. It's help just knowing that I'm not the only one feeling like I do.

Blessings to All

06-07-2008, 03:49 PM
Hi everyone -
Saysusie - thankyou for the special "hello". My name has ALWAYS been spelled that way, though, my official name is LauraLee. They told my Mom when i was born that "lauri" was a nickname and not a Catholic name, so she had to change it. BUT, she has never called me Laura!! lol Its good to read everyone's posts. I went to my doc on Tues eve and she was SOO nice and understanding (Thank you God). I was really upset (crying, etc) and telling her how I didnt want to see a new rheumie as I was really afraid they may come back and say, "youre bloodwork is fine - you're fine". She assured me that there is no longer any dispute that there is a seriouse autoimmune process going on. My sed rate and CRP are really high but...ANA still NEG! She said, "You may not have lupus, but you have SOMETHING! I'd really be more comforable with the rheumie Dxing you. But either way, I am going to put you back on Prednisone and start you on Plaquenil, until we figure out what it is. I am completely comfortable treating you for lupus, as your symptoms are so classic, and Im not going to let the ANA stop me from trying to relieve some of your symptoms." I was sooo happy. I dont care if they call what I have "Pain In the Butt Syndrome"...as long as Im getting treated for something. I really am the worst Ive ever been. So I started Prednisone on Tuesday, and notice a difference already - honest to goodness!! SOOOO happy!! I was able to walk to the community center near my house today for a womans meeting (2 blocks - last week needed a ride) without limping or swelling up, or having to take a nap! YEAH! It is really hot here in Boston, but Im doing shade mostly. In all the years Ive been sick, I have never been real sun-sensitve (a little here and there, but NOTHING like Ive read with some of you). As a matter of fact, my ability to be in the sun kept my neurologist from an MS diagnosis a few years ago. Anyway, the past couple of weeks have been UNBEARABLE. i would step outside for 10 minutes and have to go inside. I am really upset about this as working in my garden, pool, etc are HUGE sources of peace for me. i was almost symptom-free last summer, save a couple of swelling bouts and intermittent pain. I am PRAYING that the steroids make it OK for me to be in the sun even a little. Have any of you found that the steriods help with sunsensitivity? I am obviously fully willing to avoid the sun if it exacerbates my symptoms, but, I would like to enjoy it a little. Any advice from you veterans? Hope evryone is feeling well today. Stay steady!

06-07-2008, 03:55 PM
PS - I also live on the beach....I loooove the outdoors!! Tell me I can be outside a little!! Pretty please????
Stay steady,
BTW - I thought I noticed a few weeks ago another woman posting from Quincy MA. (just south of Boston). Was I mistaken? Wouldnt that be somehting, huh? OK Take care all....

06-07-2008, 06:52 PM
OK - Now Im just being obnoxious. It is later in the evening (a few hours after I posted) and it dawned on me that I didnt explain myself well. I do have sunsensitivity (butterfly rash gets much worse, eyes are really sensitive). I have had this from the begininning. But the bad exacerbations of symptoms is new (generally feeling sick, fatigue, headache, swelling) with exposure to the sun over the past few weeks. Basically just being outside is unbearable - this is definately new - but increase rash is not new.
Im almost certain that these details dont make much of a difference to you all, but I just wanted to be clear - lol. OK, little obsessive with the steroids on board. lol. Going to go to try and sleep now.
Good night all -

06-08-2008, 06:21 AM
HI Becky...

Siick and tired. I know the feeling well..we all do. Matter of fact a Karen uses that as her moniker. I had put an APB out on her and still no word from her.

Describing ourselves with such negative words about ourself, sometimes unknowingly we will buy into and start believing we are useless. It is hard to defend ourselves against ourselves..

We try so hard to defend ourselves against family, doctors, nurses, family, coworker who assume we are just that and/or lazy, hypochondriacs ...and it pained me to see another call themselves useless.

I don't know about the hearing process, others hopefully will pop in, or start another thread in Lauri's Lounge title Social Security Disability questions. Hey, I will suggest Admin to start a disability, finances forum...

I've learned to how to ask and to like, enjoy people helping me...it is nice. I hope you can find that place within you like many of us had.

Follow the link for possible financial assistance in North Carolina...

http://www.dhhs.state.nc.us/dss/programs/index.htm OR try here...

Be well I ask...Hugs

06-09-2008, 10:52 AM
You are not being obnoxious :lol:
I am so happy that your doctor is understanding and is willing to treat your symptoms (in spite of the negative ANA). She is absolutely right in saying that you may not have lupus, but there is definitely an auto-immune process going on. Many of the auto-immune disorders have similar symptoms and the treatments are essentially the same. So, Prednisone and Plaquenil are pretty safe to start with. I'm glad to hear that you are already finding some relief with the Prednisone.
With reference to the sun, many of us have found a way to enjoy the sun for brief periods of time. We slather our bodies with sunscreen (SPF 35 and above) with UVA & UVB protection. We wear loose fitting clothing that covers our extremities, we wear sunglasses with UV protection and hats! It is important that you limit your amount of time in the sun (yes, even with all of this protection) so that you do not suffer ill affects and/or cause a flare-up of your symptoms.
I don't know if steroids help with sun sensitivity, I've not heard that particular benefit of steroids. I think that Prednisone actually suggests that you avoid too much sun exposure as it increases sun sensitivity.
I wish you the very best and I hope that you continue to feel better!

Peace and Blessings

06-09-2008, 12:02 PM
Thank you so much for the response. Well Saturday, I went in and out of the sun, but really couldnt stand it for more than 30 minutes or so. It just make me feel really sick with a headache, really weak, etc. And, wouldnt ya know it - Sunday AM I woke up and looked like someone had blown me up with helium overnight. My eyes were SO puffy, my fingers, shins ankles and there was just a feeling of internal pressure - almost like if it was sprained. Like if I bent my arms or legs too far (OUCH) they would pop. So, I spent yesterday on my screened porch off of my bedroom (can see the beach - so nice) and in my bedroom where my husband had just put in the AC. I was a little bummed, but, its not worth getting more sick over. I have truly been laid up for a couple of months at this point, and really need a break from the symptoms. SOOO, I was a good doobie 8) and stayed inside mostly. I did do some weeding of my garden (this is really LATE for me to be starting my gardening!!) but that was at 6PM and the sun was getting ready for bed. Im still not sleeping great from the steroids, but it wasnt too bad. And WALA! MUCH less swelling this morning!! (YEAH :lol: ) I have to admit that I am better than I was the day before the 'roids, so I am grateful for that. I have to focus on ANY improvement, and have gratitude. Ahhh...This too shall pass...One of my favorite sayings...So, i hope everyone else is feeling OK, too! Bye for now, stay steady!!

06-09-2008, 03:23 PM
It is important for us to pace ourselves and to make sure that we do not over do anything - including sun exposure. Also, getting sufficient rest is also important. Many of us, like you, are not able to get recuperative sleep at nights and have had to make accommodations for that.
I hope you continue to feel better, continue to listen to your body and, yes, be grateful for the small successes!! :lol:

Just checking in to see how you are doing and how you are feeling. I hope that things are getting to be a bit more bearable for you and that you are able to find some joy every day!

Peace and Blessings

06-09-2008, 04:06 PM

Just make the most of the time you can be outside. But know your limits. Light airy clothes that cover well and a hat and really good sunshades.

I went for a walk this morning along the harbour front. It was a beautiful mild morning, and the sun wasn't very strong in the sky as it was still early. I wont go out at noon.

06-10-2008, 05:47 PM
Yesterday, very bad today, I was in lupus fog (as I call it) :? most of the morning to the point I had to let my son that doesn't even have a permit yet drive :roll: now thats very scarey. The day did get better as it went on and I was very proud of how good my son handled the driving. I'm in yet another fare up but that seems to come right after each monthly period.

Today was a better mental day, I had a friend over for a while to keep me laughing, then sleep the rest of the day but that's nothen new. Life with lupus, but, life is what keeps us going.

Hugs & Blessings to all[/quote]

06-10-2008, 05:51 PM
Thanks so much for the replies...it means alot to me. I have been a VERY good doobie, and I have gotten alot of "Hey, you look better!!" about the swelling. Its funny, I dont even have to be blown-up, per say, in order for my loved ones to know I dont feel good. I just have this....look, you know? BUT..lots of "You look good today" Thank you God. I may, however....have done a bit too much this evening. It was my Dad's 65th birthday, and I had everyone over here to eat. My husband did all the cooking, my Dad made potato salad and antipasto, and I had a pasta salad in the fridge. Throw it all together - WALA - birthday party!! It went nice, but I did forget to chill after dinner, and began to clean up. My husband literally scolded me like a child (you get what you ask for!), and I stopped. So - really trying to do as Im told. i have a question... When i was put on steroids in January, I started to feel better right away, and as the taper went down, I started feeling lousy again - actually worse than I had started. I waited until April to go to the doc again (stupid) and was put on them again. Felt better again - then went away. Waited another several weeks to call doc (yes, I knwo, stupid). Anyway, in your experience, does the steroids work great then start to fade off? I am def. feeling LESS fatigued and less pain!! I want it to get even better!! I will be really disappointed if it starts to pan off again. I'll call the doc this time though, for sure, if it happens. Also, the last 2 tims there was a taper, and this is not - just straight dosage everyday until further notice. What do you guys think? Does anyone have similar experiences where it starts to work, and then kind of , wears off? Just curious...

06-11-2008, 08:35 AM
It is not uncommon for symptoms to re-appear when tapering steroids. In fact, it happens to almost all of us. Some doctors will then decide to put you on a dosage that manages the symptoms and leave you there for a while before starting to taper. There is always the chance that, with stress, illness, or other events, the symptoms will re-appear and your dosage will have to be increased to get you through that period of time.
In your case, you may need to be on the smallest dose to stave off symptoms for a longer period of time. It is a good idea to talk to your doctor about this.
I'm glad to hear that you were able to enjoy your party :P And, as your husband scolded, do remember to take it easy after any type of function. We have a tendency to do too much when we are feeling relatively OK! So, be careful and remember to rest, even when you are feeling better.

Peace and Blessings

06-11-2008, 08:38 AM
I am so sorry to hear that you have not been feeling well. How old is your son? I am sure that he was jazzed about getting an opportunity to drive :lol:
You are doing the right thing by making sure that you get plenty of rest.
The "fog" is something that almost all of us Lupies have to deal with more often than not. So, we completely understand what you mean.
I hope that today finds you feeling a bit better with lots less fog.

Peace and Blessings

06-13-2008, 05:59 PM
Hi Becky...

How is life today..still muddle thoughts. My brain feels full when I am in the cloud. I feel numb and can only handle the literature depth of the Enquirer. No brain required for the Enquirer.

Menses..are they heavy, cramps..maybe you can supplement with a B-Complex Vitamin...during the luteal phase. The phase after ovulation. If you are an average girl 28 dayer lets say, that would be from day 13 - to day 28 after the first day of your menses...

I usually babble or I am dull when I am in the fog...Pardon me while IT takes over...

Yes, sleep it away...as Saysusie said...rest..

Hugs..Be well,