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alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 2/21/2009 1:54 PM (GMT -7)   
Hi All,
 
I'm a newbie to the forum . . . spending my Saturday in my usual position: flat on my back on the couch (laptop on my lap, surfing) because I refuse to take it easy the rest of the week, feeling like I have been hit by a bus because I am so tired . . .
 
I am 40, and my life is generally unspectacular, living the typical American family life with a husband, 2 kids, 2 cats and a dog. My kids both have Autism, making life a little more interesting than it should be some days and my huband and I travel frequently for work - we both work for the same company, an importer of decorative goods.
 
My road with lupus has been interesting to say the least. It took close to 5 years for a diagnosis. Most doctors saying "you are sick and tired because you are depressed", while I was saying "I am depressed because I am sick and tired"! Endless blood work and tests, with always being told "there is something wrong, but we are not sure what" because my ESR was always elevated, and other things were out of wack. They suggested Lupus, but my ANA came back negative. So, nope, not Lupus. In the mean time, I continued to feel miserable, achey, tired always. As it turns out, I am one of the weirdos that is ANA negative, cytoplasmic staining positive. My previous doctors were only looking at the ANA negative, and (which I did not know at the time) had never pulled a full Lupus panel, only an ANA. All of the other hematologic abnormalities of Lupus are present, just not ANA positive. I have SCLE which seems to be in flare mode more than in remission mode and have had organ involvement and pleurisy as well.
 
I have chosen to go a different route than most, relying on diet modifications, stress management and rest to alleviate my symptoms and that seems to work most days, although there are days that it is really difficult to do anything but lie around because I am so tired and achey. Fortunately I have a family who understands. My husband is one of the 3 men in the world who are willing to help cook, clean and do laundry. My kids are great too, knowing there are days where mom is just too tired and usually try to do their share as well. My employer is great about it, too - if I am having a bad day (and we all know about those bad days, don't we?), all I need to do is call up and tell her that I need a day off. On incredibly achey days, I have been known to show up for work in my pajamas - nobody cares, everyone knows - plus I can work from home if I need/want to. I am really lucky . . . not everyone has the support system I do. Knowing that it is OK to take a day off if I need it and having the support I do at home has really made it manageable for me.
 
Anyway . . . that's me . . . love to travel, love to cook, love to read, love to sleep . . . and most days love life.
 
I look forward to getting to know you all . . .
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 2/21/2009 6:02 PM (GMT -7)   

Hi alienwife, Welcome to the group! sorry it took a while for someone to answer. Things get a little slow on weekends. I'm sorry you are having problems but I'm glad you found us. You are right. You're very lucky to have people to support you like you do. You'll find out there are some other folks on here that have children with autism. Not sure if there is a correlation or not. Than again I saw a comercial that 1 out of 150 children have autism. I would have never thought that. But hey if you can get your kids to help around the house that is a true blessing! Oh my name is Carol aka okie, or goofy,dopey,doc. I've been called it all and I will probably answer to anything. Let's see. my story is I'm 51, a widow for 10 years now. I have 2 children a son that's 28 and a step daughter that is 25. I have 4 granddaughters. Which is weird because for years no one in my family knew how to have anything but boys. I still havn't been DX'd but I have been dx'd and then undx'd. I have been maybe this and maybe that. Right now I am in need of a lung trqnsplant but they are doing lots of tests to find out what exactly is wrong with my lungs. If it's autoimmune then I probably won't qualify. but most days I except things the way they come. I do have my grumpy days though.

You said you aren't taking any meds? I would never suggest anyone take anything that isn't needed but a lot of us are on plaquenil here. It is a very safe drug and it kind of reminds me of a vitamin. You don't really notice it until you stop taking it. It takes several months to really work up to it's potential but boy has it helped me alot. I realized I don't swell up nearly as often and my joints aren't nearly as sore. I don't have a bunch of flares or fevers. I only bounce back and forth on 5 to 10 mg of steroids these days and I am sure it's the plaquenil that is helping.

Well anyway I just wanted to throw that out there. I'm all for exercise and healthy living but I also am not going to say no to something that has a good outcome for me. But we are all different.

anyway I look forward to getting to know you too. I'm sure others will be along to give you a shout and say welcome to the group too.

take care

huge hugs

carol



 CAROL
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 

Post Edited (okie) : 2/21/2009 6:05:25 PM (GMT-7)


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 2/21/2009 7:46 PM (GMT -7)   

Nice to meet you, Carol. My name is Anne. Chose the name "alienwife" because my husband is still technically an alien since he has not completed his citizenship yet (doesn't know if he ever will - he is not conviced he should).

I'm sorry to hear about your problems. I am hoping that your doctors can find the answers and get you the help you need. I know how frustrating it can be when they don't know exactly what is wrong and the dilemmas of actually finding out. In your case, if it is autoimmune, you probably won't qualify for a transplant you need . . . in my case, I will never be able to get health insurance (because my employer does not offer it) and my income level is such where I don't qualify for any type of assistance. Not that I am rich, but I don't fall into poverty level, either. Frustrating situation.

I chose the natural route for now because I wanted to see if diet modification and stress management would work for me and it does, for the most part. I am usually tired and aching, but find that if I push beyond the first wall in the mornings, I can usually cope through the rest of the day. This probably contributes to my complete exhaustion collapses on the weekends, but at least that mode of operation helps me to feel like I am at least somewhat normal. My doctor has recommended Plaquenil, but I figured as long as I have the mental, physical and emotional stamina to push through without, I would wait until I was so miserable I had no other choice. I have a TENS unit for the peripheral neuropathy, which helps tremendously and I have a husband to rub aching joints :)

I guess I came here to meet others who were dealing with my type of issues. It's really alienating when you have to explain to people what's wrong . . . my in-laws are not native english speaking. We go to visit them and they simply don't understand that I cannot partake in the European tradition of the all-night party (my brother in-law-got married last year and the reception lasted until 6:00 a.m. - I had to leave at midnight because I was so tired I was ill). They don't understand that I don't want to go on a 20K hike along the coastline through all the little cities. I have great support with my husband, children, mom and boss (who is also one of my best friends now), but it hurts when the other side of your family doesn't understand.

Ah well . . . enough of my moaning. My problems are pretty insignificant compared to others.


AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy


tntstables
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/21/2009 8:00 PM (GMT -7)   
Welcome to the group...I to am new here but its does seem to be a great place to meet new people and at least maybe be understood. I too have the in-law issues. My mother in law is probably the worst but I do get so tired of trying to explain that I am not up to going all the places and such. Or I get the guilt stuff...well we should stay home...she is tired! Good lord...after 20 years of marriage and 16 years of this disease you think they would get it. NOPE!!!
Its nice to have you here...!
Tishka
Today is a new day...and I will live it to the best of my ability!


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 2/22/2009 5:24 PM (GMT -7)   
Hi Anne,

Welcome to the forum. I'm certainly not pushing meds . . . but plaquenil is quite safe and it 'can' make a huge difference in the way you feel. I have used it for years and it is my mainstay med. I've stopped several times . . . but my quality of life is so much worse w/o it.

My biggest concern is allowing this disease to unseen damage in my body. Sometimes by the time we can see damage on tests and before we have symptoms, we can develop organ damage.

I hope you find some helpful info and some good friends here. It is so nice to have a place like this to go and see how others cope and manage.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/22/2009 7:07 PM (GMT -7)   
Hi Anne, welcome! This is a great place filled with wonderful people, I hope you like it here!

I am with Rosie, some of the meds we take for lupus can slow down the progression of the disease. I don't like taking a handful every day but I have to in order to function. Of course each of us has different views and our illness may not be at the same level, some of us are mild, moderate to severe and everything in between.

I pray your diet, etc keeps your symptoms at a minimum. Take care, I look forward to getting to know you.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 2/22/2009 8:16 PM (GMT -7)   

Hi Everyone,

Thanks for the welcomes . . . I have spent some time here this weekend and have enjoyed getting to know those who I have talked to . . . It's nice to have people to talk to who understand.

I think one of my biggest issues is guilt . . . I feel really bad that hubby and kids have to do so much around the house because I can't. While I have managed to accept that I can't do all that I used to/want to, I haven't completely accepted the fact that someone else needs to do it for me if it is going to get done. Hubby does most of the laundry, alot of the cooking, most of the cleaning. I can usually manage to go to work, but that's about it. Frustrating . . . I feel like maybe I should cut back at work, but I love my job and it helps me to feel normal.

Guess I am having a down day. sad Tired, frustrated. Would love to vent my frustration and throw something, but that would require me to move something more than my fingers.


AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy

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