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View Full Version : Well hello fellow Lupies!



MissDIY
09-03-2013, 07:55 PM
Hey everyone!

As you know I am new to the site - and new to forums in general.

I am 30, married for over 7 years, no kiddos....yet. :)

My basic story is that it all started in High School when I got diagnosed with chronic Lyme disease (I'm originally from PA). The doctors suspected I had been bitten over a year and a half prior to DX, therefore it wrecked my body. About a year after my first DX, they found that I had been bit again, and was treated with the meds again.

I was also DX'd with a heart/BP issue called Vasodepressor Syncope which meant that upon standing too long (more than a few minutes) I would likely pass out. One episode resulted in a seizure which hospitalized me for 5 days and lead to the official diagnosis.

Over the next 10 years I suffered from migraines, stomach issues, joint pain, fatigue & other minor ailments.

In 2008 random severe joint pain lead me to a Rheumy (we shall call her Dr. No-good), who found no cause, but a positive ANA and told me to take Ibuprofen and brace the effected joint for immobilization until pain was gone. This lasted over a year, and upon switching to a desk job gradually took a back burner.

In 2010 my 29 year old husband was DX'd with Stage IV Colon Cancer and underwent surgery and 7.5 months of aggressive chemo. In July 2011 he was successfully in remission. (Yeay!!!)

4 days after his clear PET scan my body completely failed me. I was bedridden with excruciating pain, fevers, hot flashes & nausea. Back to Dr. No-good who did a ton of blood work and gave me a prednisone taper. Long story short, she was no help other than to get that prednisone in me. Over the next 9 months I went to many doctors including my husband's oncologist/hematologist who found the DS-DNA, the Antiphospholipid Antibody Syndrome, numerous other worrisome markers, an enlarged lymph node in my neck for 6+ months, and an enlarged spleen and referred me to a colleague Rheumy (we shall call her Dr. Awesome!) who immediately DX'd with SLE Lupus. That was March 2012.

I did not tolerate Plaquenil well, so we decided to treat flares with steroid tapers. I blissfully thought that I could live my life like normal (Ha! Silly girl!) and every now and then shock my system back to reset with some 'roids...NOPE! Not how Lupus likes to play the game!

I am about to start a month long Prednisone blast & taper leading to daily low dose prednisone (5mg/day - I think?) Anyone else on that treatment?

So, I am now navigating the reality of chronic pain. Being only 30, my friends just don't really understand the limitations and how exhausting dealing with pain is every day (though they really try!), so here I am seeking friends who get it. :)

My husband and I are trying to get pregnant - and Lupus just makes that pretty scary.

Thanks for getting to know me, I look forward to getting to know you!

kim,l
09-04-2013, 03:44 AM
welcome to whl family sorry you having bad time we are all here to support one another. my name is kim I am from queensland Australia. I take prednisone 5mg a day plus plaquenil and mexotrexate I was diagnosed about 5 years ago but rheumi seems to think had it in childhood I am married 29 years and have 3 children 26 year old boy and 25 year old daughter and 18 year old daughter. look forward to getting to know you.

debbie-b
09-04-2013, 02:28 PM
Hi and welcome to WHL.
You did find people who get it.
You are pretty much the poster child of Lupus, almost all of us had a long journey, until we were diagnosed.
I am Debbie, 57 years old, diagnosed with Lupus in 2006, RA in 2008 and Sjogrens and Autoimmune Hepatitis last year.
As for having a baby, we have had several ladies here who made us aunts and uncles.
I am glad you have joint, this is a very nice group of people.

Debbie

SleepyInSeattle
09-04-2013, 03:43 PM
Howdy, and welcome! Sounds like your body held out as long as it could...funny how things happen like that, isn't it? I'm sorry you had to go through such a scary time with your husband, but I'm glad to hear the excellent outcome. Modern medicine can be pretty miraculous these days....

I am 45, diagnosed a few years ago though probably had Lupus for a long time before that, like most of us. I also have Sjogren's, APS, and Raynaud's. I've had some clotting issues in my eye from the APS (thank goodness nothing worse!), and my main symptoms from the other stuff are fatigue, brain fog (pretty disabling before treatment), achiness, muscle and joint pain, constant low-grade fever, low blood pressure, night sweats, occasional migraines, etc - you know the list! Pretty much the usual....except last year for some reason the lupus decided it didn't want me to have ears, and my body attacked itself so now I am deaf in one ear (autoimmune hearing loss). It sucks, but I am glad it wasn't a kidney or my liver, I guess.

I take Plaquenil, methotrexate (I started that after losing my ear), a daily full-strength aspirin (for the APS), and a bunch of supplements recommended by my Neuro and Rheum, as well as staying away from foods that seem to trigger disease activity (also on docs' advice). I have been on steroid bursts now and then, and have been on 5mg/day of prednisone for the last 6 months or so, but I am trying to wean off it - I'm at 3mg/day as of 4 days ago, and am feeling pretty lousy - not happy about that. I was hoping to eliminate it altogether, but we'll just have to see. I would say that in general, now that I am on a good diet and medication regime, I am at 90% of "normal" most days, give or take. Before treatment I was at 25% or less much of the time. I call that successful treatment!!!!

The Plaquenil and methotrexate have both made a HUGE improvement in my health, but they did take a while to adjust to. I had to start with low doses and gradually work my way up to full dose over 2-3 months. At first, I had side effects, but those faded and now I have almost no side effects from them at all.

I hope that helps you in some way - at least to know you are in good company! This community is very supportive and understanding, and has TONS of good advice and information.

Best of luck to you, and I hope you enjoy being here.

annabanana
09-11-2013, 05:27 AM
Hello! I am new here, too. It's been a rough week of feeling like complete crap and something is wrong... fevers x5 days with left upper abdominal pains, accompanies by very itchy soles of feet and palms of hands. I have never had anything like this. Went to doc yesterday and am awaiting some test results. It brings back the LOOONG unknowing journey which led to the Lupus Dx. I just hope we can figure it out! It's nice to be in a place where everyone understands. I always feel like I am whining too much and people who feel good all the time, just don't get it... they say "you sure don't look sick", which is flattering, but also very frustrating.

tgal
09-11-2013, 07:22 AM
Hi Anna and welcome! Sorry you are feeling bad but glad that you found us. Vent away. We get it

PearlGirl
09-11-2013, 07:58 AM
Hi MissDIY!

I just wanted to say hello! I am new to this forum, as well. I am 33 and can totally relate to being pretty young and wanting to feel and act like it. Healthy people definitely don't get it, though it is nice to have people who try. I am married with two boys, conceived and born before any major health issues/diagnosis. Before I got my UCTD dx, we were trying for a baby for over a year with zero luck. I still haven't gotten to the bottom of my fertility issues. My rheum doesn't feel that it's related to my disease, because AI usually causes miscarriage and not fertility problems. I'm not buying it. For whatever reason, my body does not feel equipped to carry a baby. And at this point, as badly as I want another baby, I don't feel anywhere near physically prepared for a pregnancy. Though someday I hope to!!! Pregnancy, and the unknown that comes along with it, is scary with this type of disease. On a positive note, my rheum told me that pregnancy could have a positive impact on the health of CTD patients. Anyway, I just wanted to say that I understand what you're feeling. And I wish you lots of luck going forward!

Lindsey

Creekbank
09-11-2013, 10:01 AM
Miss DIY,

Welcome to LWL. We are all here to support and listen to you always.

I am 33 years old with a husband and 2 kids. I am one who has not been formally diagnosed, but all signs point to Lupus. I can totally relate to Dr. No-Good!! Haven't found Dr. Awesome, but you give me hope I may. I also can relate to wanting to feel like a regular 33 year old woman. I feel so ugly some days. I have been on 5mg of Prednisone a day for months, upped now to 10mg per day. I am concerned of the long term effects on my body, but can't seem to be off them.
I wish you luck with a future pregnancy. I will be praying for you.
Creekbank

BonusMom
09-12-2013, 06:58 AM
Welcome to the WHL family!

As you can see, we all have our own lupie story, but it appears that they have a common thread-from onset of symptoms to diagnosis, there seems to be a delay. Sometimes, it's because of incompetent medical professionals, other times it's because our symptoms/labs don't fit squarely in one box. Whatever the reason, it makes our lives very unpleasant (for a lack of better terms).

I'm happy to hear that you've found Dr. Awesome and getting a treatment plan together.

Good luck with getting pregnant. My eldest son and his wife are going to be making me a Glam•Ma this month (due Sept. 25). Seems like yesterday I gave birth to my son and here he is, getting ready to be a Daddy-Do-Right himself!

Congrats to your hubby for beating cancer. It's a vicious bastard that's greatly impacted the lives of many of my loved ones, as well as many on WHL.

Again, welcome aboard!

kmae
09-12-2013, 06:59 PM
I am also new here my name is Karen i have been married 31 years.I was recently diagnosed with lupus 3 months ago. I have 4 children 3 that are grown and my 11 year old surprise and 3 great grandchildren. I had always wanted a career so when my children where up big enough I got my GED and went to college. I graduated with a 3.4 gpa in social work.2 months after graduation I lost my baby sister to cancer that's when i started to get sick. Everyone said it was all in my head 2 years later I lost my older sister at 49 from complications of diabetes. I tried for about a year to get a job but I just kept getting sicker. I was diagnosed with fibromyalgia then lupus.i do not know much about lupus I just know that I hurt all the time. Sometimes I feel like i'm going to lose my mind what in God's name makes you quite hurting long enough to get a good nite sleep. I am trying so hard not to let this illness interfere with my whole life but how do you not?

Saysusie
09-13-2013, 06:41 AM
Hi Kmae;
I am so sorry to hear that you are suffering so much and that you've experienced two great losses. This disease can he heinous. Many of us have decided that we must find a "new normal" and make important lifestyle changes in order to help us manage our disease. This can take many forms which should also include working closely with your doctors and taking all prescribed medications.
You did not mention what treatments you are taking, if any. Do you have a rheumatologist? Are you under the care of a doctor specifically for your Lupus and Fibromyalgia?
There is a wealth of information here on our site (both in the stickys at the top of each forum and in the forums themselves). Please take the time to read some of the information in order to learn a bit more about both of your conditions. Also, please know that we are here to help you in any way that we can. I wish you the very best.

Peace and Blessings
Namaste
Saysusie

Shanna
09-15-2013, 09:49 AM
MissDIY,
My name is Shanna, I was dx a few years ago with SLE, Reynauds,Cutaneous Lupus,Sjogrens. I feel for you, I know this sucks...lol. In response to your question about treatments, are you only taking prednisone tapers? Although they can be a godsend at times,they are a catch 22,because they can cause other side effects that can lead to problems later. I'm on Cellcept and I also receive monthly Benlysta infusions at my local hospital, there are a couple different meds to help treat Lupus, and by taking those you might be able to limit the use of prednisone, have you asked your doc about some of these other meds?