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View Full Version : What is your "new normal"?



Redhead
03-13-2007, 08:13 AM
I keep reading people saying that their life will never be the same again, that things have never gone back to "normal" once they've been diganosed, they'll never be the same person again, etc. I find that to be the scariest thing.

Could anyone be a little more specific about what this has meant to you?

Does "life will never be the same again" mean being in a wheelchair and having to quit your job and being in the hospital a lot and having to have your children sent away from you a lot because you're unable to take care of them?

Or just that you have to take a lot of meds and be very careful in the sun and take a nap every day?

Or something else?

I guess what I'm asking is, what changes have you had to make in your life since being diagnosed, and do you have any tips on coping with them?

Thanks
Jenny

Saysusie
03-13-2007, 01:28 PM
For Me, life never being the same again means:
* I can no longer run 4 miles/day.....so, instead I swim laps when the weather permits and I do Pilates when it does not permit.
* I can no longer sit out in the sun and enjoy the rays....I have to use sunscreen as body lotion and still keep myself covered up
* I can no longer run around from sun up to sun down...now I have to schedule chores and activities and take rest periods and/or naps during the day.
* I can no longer hold a full-time job....so now, I work for myself and from my home writing grants for non-profit and faith-based organizations.
* I can no longer jump out of bed and be immediately ready to face my day....Now, I have to get up slowly, take a handful of pills, allow my joints and muscles to ease out of their stiffness and pain and then slowly and methodically PLAN my day!

I could go on, but I think you pretty much get the picture. Life never being the same essentially means that we have had to make lifestyle changes in order to manage our disease. But, it does not mean that we can no longer live meaningful lives!

Peace and Blessings
Saysusie

papillon
03-13-2007, 01:48 PM
Hi Redhead,

I just wanted to say I just got diagnosed a few months ago and am happy you asked that question. I likewise kept reading these stories and posts and wondering what to think about normalcy now and what that used to feel like and what they will feel like now.

Kat1224
03-13-2007, 05:25 PM
Hi thanks to papillon and redhead, I too wanted to know what changes to expect. Thanks saysusie for your answer!

the wingless one
03-13-2007, 05:30 PM
I don't really know many people outside of this board with lupus but from what I've learned on this board it sounds like lupus really affects everyone differently. There are definitely similarities but a lot of it seems to depend on how severe your particular case is.

Maybe because I was always kind of a couch potato homebody to begin with, but lupus really hasn't changed my life in an extreme way. The main difference is that I take a lot of medicine and I get tired a lot more easily. Sometimes when I am in stores with bright fluorescent lights I feel overheated, sick and dizzy, but I am usually okay in the sun which is good since I live in Southern California. Another difference is I have gotten really used to having my blood drawn and seeing/keeping in touch with my doctors all the time.

Sometimes I think I should change my lifestyle a little more than I have since I still do things that can make my lupus flare up if I'm not careful and overdo it (e.g. I still stay up late a lot and don't get enough rest, go out and party late with my friends from time to time, drink more than I should at times, especially now that I am studying abroad in Paris...) but I guess I feel like I am supposedly still young and I do limit myself a lot, so maybe I've given up enough?

Another thing is that traveling wipes me out in a way it never did before...when I flew through Heathrow to Paris I was so exhausted by standing in the long security lines with my luggage that I had to request wheelchair service at Charles de Gaulle.

So I don't know if this helps at all, but at least for me I still have some semblance of the same "normal" I had before...it's mainly having to be a lot more conscious of my limits and being careful not to reach them.

MARYCAIN
03-13-2007, 06:00 PM
Hi, Jenny! It's important to understand a couple of things about lupus - first, it affects every single person differently - because something happens to one person, it doesn't mean it's going to happen to you. Second, the lupus experiences you will hear about in support groups such as this are not necessarily a "representative sample" of people with lupus, to use a statistical term. Many people with lupus have a milder form of the disease, and will lead a mostly "normal" life - you've probably known people with lupus before and just never knew it. So those of us who choose to share our experiences in a support group are not always "typical" lupus patients. And some of us have other medical conditions, such as a second autoimmune disorder, or a condition like fibromyalgia, that complicate the lupus.

So, normal for me means taking medicine every day, having blood drawn every month, and going to the hospital (outpatient cancer center) every month for IV cytoxan and IV steroids. It also means wearing a lot of sunscreen, which was never anything I worried about before, and having to follow a different diet. I'm still able to enjoy many of the same foods - I just have to fix them in a different way. I still work at the same firm where I've been for years - only now I work in a different department, bill fewer hours, and work from home a lot more. I have children, and I'm still just as active in their lives - the major difference is I don't go to the outdoor sports practices or daytime games. Fortunately they are leaning toward baseball instead of football, and orchestra instead of band, so next year most of their extra-curricular activities will be indoor. I have a very large family in the area, so I never have to worry about back-up child care if I were to get sick. I used to love travelling, now it's something I dread because it tires me so much - same for shopping. I now look for stores that deliver, and do a lot of shopping online. I also have post-it notes everywhere to remind me of things, because my memory isn't a hundred percent reliable any more. We moved from a house that I loved to a smaller one that was easier for me to manage and for us to afford, especially with less income coming in.

Is it a different life than the one I expected? Yes, of course. But it's still a good life, and my blessings far outweigh anything else. And it's definitely made me a stronger person. I've learned how to cope much more effectively with pain and frustration, and everyday, petty annoyances don't seem nearly as important as they did.

utenutter
03-15-2007, 04:00 AM
hello,
so can a mild case off lupus turn into a severe case of lupus.Like if you have discoid lupus can it turn to SLE.


shane

tess
03-16-2007, 05:33 AM
My new normal is that I can't wear an underwired bra anymore because it hurts by ribs. That's more or less it on medication. Not taken a day off work yet (full time junior doctor). Don't assume it's gonna be bad, it may well be fine.

kkelly
03-22-2007, 01:49 PM
My new normal took time to get to. Its been about 4 years and the past two have been much better. Its alot easier once the mental stuff and fear settled down. My husband always says "be easy on yourself" and that is true. Its a tough road to travel but lots of people have tough roads that are different but equally hard so once I accepted the changes my mental space wasn't completely preoccupied with it like the beginning. Try to keep having fun.
Also - keep hoping. Lupus is tough to treat but not impossible and lots of people find a good combo of either meds/diets natural remedies that make things much more tolerable. It can take awhile but eventually you will find a good formula.
all the best
Karen

Saysusie
03-26-2007, 09:19 AM
Utternutter;
The problem with Lupus is that it changes. It is not the same for any two persons and it can change within each of us! Unfortunately, yes...Discoidal CAN evolve into Systemic Lupus. Discoid lupus does not generally involve the internal organs of the body. However, approximately 10 percent of patients with Discoid lupus can evolve into the systemic form of the disease.
A mild case of Lupus can also develop into a severe case of Lupus. However, it is generally held that, if you have a mild case of Lupus and you are taking your medications, doing everything you should do to avoid a flare, making appropriate lifestyle changes, following your doctor's instructions and taking care of yourself, you may not develop a severe case of Lupus.

Peace and Blessings
Saysusie

Redhead
04-02-2007, 05:24 PM
What is the difference between Mild and Severe Lupus?
Are there concrete distinctions or definitions?
Would my doctor be able to tell me which one I have?


When someone has Severe Lupus, does it hit them all at once, or does it gradually get more severe over the years?

Saysusie
04-03-2007, 08:48 AM
Severe Lupus usually invovles the internal organs (as well as fatigue, skin rashes, sun sensitivity etc.) and manifests in symptoms such as pericarditis (heart), pulmonary hypertension (lungs), lupus nephritis (kidney), to just name a few. Yes, your doctor will know, based upon what parts of your body are involved and what organs are involved, if you have severe or mild lupus. Mild lupus may manifest itself by skin rashes, chronic and debilitating fatigue, hair loss, mouth and nose ulcers, etc.
No, not all of us develop severe lupus all at once. The maddening thing about Lupus is that our symptoms change, they come and go and many of our symptoms take time to develop. Some of us find out we have lupus after we've suffered from severe internal involvement. There is no way to distinctly say how any of our lupus symptoms will evolve. For some of us, it takes years before we develop serious symptoms, some of us never develop serious symptoms and some of us start out with serious symptoms! That is why getting a final diagnosis is so difficult and such a lenghty process for many of us!
Elesewhere in these forums are discussions about the tests that doctors will run to determine which, if any, internal organs are involved and how much they have been affected. Perhaps after reading those and comparing them with the tests you have taken, you may have a better understanding of what your doctors are looking for and weather or not your lupus is severe or mild.
I wish you the very best
Peace and Blessings
Saysusie

TammyR
05-05-2007, 02:44 PM
I'd say my new normal is a lot like Saysusie's. I lost my job and I am trying to work at home doing websites, although it isn't quite paying the bills yet. One thing that really irks me is when people find out I have Lupus and they say they know someone with it who lives a normal life and Lupus does not really affect them day to day. It's like I am blowing it out of proportion when I can't get out of the bed the next day after shopping at Walmart for an hour. Some people just don't get it that Lupus affects some people differently than others. Thank goodness for this forum because it is the only place that relates and makes me feel half way sane!

Ruth1980
05-05-2007, 03:21 PM
TammyR is right on the money, especially when she was talking about people knowing someone who has lupus and leads a "normal life". Whenever I hear that it just makes me cringe! Lupus affects all of us so differently that some of us will have mild symptoms and others of us will have severe symptoms and everywhere in between. For me I don't have a "normal" pattern. My symptoms change so frequently that its impossible to have a new normal. What I do have is the knowledge that I have to plan out my day and everything that I do, I have to pace myself and prioritize everything. I never used to be a "list person", but now I live by lists they help me SO much. Some things on my list may not get done, but oh well. I do my best and i've learned that i have to be happy with that.

mnjodette
05-05-2007, 03:32 PM
Tammy and Ruth, you're so right. It's frustrating to hear someone tell me about someone they know who has lupus and that person's life is so normal, no one would even know they were sick. They don't understand how many different shapes and sizes lupus comes in. They may not know what it takes for that person to appear "normal" to them. And, they don't know what that person might have gone through earlier or might go through down the road. I have a few close friends who understand (my boss is one, thank you God!) As for others - I'm pretty tired of explaining. I just try to focus on not making my life about my illness, and I look outward as much as I can. It helps me, and I think it makes it easier for my family.

Brandie128
05-11-2007, 10:19 AM
This is exactly what I have been dealing with myself. I have been sick most of my life, even before diagnosis, due to an extremely rare genetic condition. So normal has never been normal for me. But since diagnosis I was forced to drop out of graduate school and quit my job. I'm constantly in and out of the hospital and most days I have trouble with doing most of my errands before getting too tired. I was also forced to move back in with my parents so they can take care of me especially when I'm doing my infusions. I wonder if it will get better or if possibly I might even get back to the way I was before I got sick from Lupus. It might not have been great but I would definately trade everything to have it back! Being 25 and back with my parents is difficult and I'm about 6 hours away from all of my friends. I don't know if I will ever come to a point where I consider this normal. Right now I think I would just take feeling even a tiny bit better over a new normal. I wish everyone luck in finding a new normal or even getting the old one back!

~Brandie

Saysusie
05-13-2007, 08:36 AM
Brandie;
Just a curious question. You said that being 25 and having to live with your parents so that they can take care of you is difficult. May I ask what makes it difficult? This is just a personal question for me :lol:

Saysusie

Brandie128
05-13-2007, 03:51 PM
Even though I am totally grateful that I have them to fall back on I'm still having issues. Mainly, it's me trying to assert autonomy and be an adult and them babying me. I feel like I'm back in high school compared to living by myself. Don't get me wrong I love them for all that they do but sometimes I long to be back on my own. The fact that that probably won't happen any time soon doesn't help. I know this sounds like I'm wining and I don't mean it that way. I just would like to be treated more like the adult I am and less like a sick puppy that needs taking care of. I have talked them about it and it has gotten much better with my dad but my mom says she doesn't see how she is doing it and gets angry. I guess because I have been down lately it probably seems much worse than it actually is...everything seems bigger when your down! But like I said I'm lucky to have them because I know others of us out there who aren't that lucky. I pray for them and all us every night. Thank you for your kind words on my other post--it made me feel better to hear your story!

~Brandie

Saysusie
05-13-2007, 08:41 PM
Thank you so much for answering my question and for being so open and honest in your answer. It was really important for me to understand your side and your point of view on this issue!

Again...thank you :lol:
And you are most welcome (regarding my answer to your other post). I am glad that it helped you a bit.
I wish you the very best!

Peace and Blessings
Saysusie

delibean
06-06-2007, 08:56 PM
Hmmm... Well at first I thought it all started because I was in the process of weaning our last child. I was tired and mega achy all the time... then I got this weird rash everwhere...went to the doc and they ran lots of blood work...to come back with a + for SLE...

I guess new "normal" for me is
Get up...try and shake off the aches and pains...get downstairs. Feed the girls make lunches...take my pills. I then need to just sit for a bit before I can get the rest of the day off to a start.

I do the same stuff. House work and all. I also try and nap whenever I can ( usually when DH gets home from work) then I get up make dinner and that is it. I find I now need to get to bed between 8-9 30 at the latest or I am buggered.

I schedual my doc appts to work with my Husbands work schedual...he likes to come with me to ask ??? too.