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View Full Version : Newly Diagnosed--Which end is up?



elleinod
08-04-2009, 08:01 PM
Hi,

I was diagnosed with Lupus after a four+ year struggle. I was told it was nothing. I was told it was likely cancer. I am certain if there was no spot on my arm to point to, I would have been told it was all in my heas. I know my story is not unique--but I feel like I have been through a war. The process was first terrifying, then exhausting, then numbing.

After all that, I got a really live diagnosis (sad to be so excited to hear: You have a chronic illness) in March. I now have three problems:

1. I thought I was at the finishline only to realize I am just at the beginning. How do I navigate possible medications and lifestyle changes? One doctor told me antimalarials will only mask symptoms; another told me to avoid steroids at all costs because they will make me "fat and suicidal". Do I really have to stay out of the sun forever? Is plaquenil worth going blind over? I have so many questions but often I am too tired or overwhelmed to ask them. I haven't been able to find a support group near me.

2. After all the doctors and tests and false starts, I really don't have a lot of faith in the medical community. I am having a hard time trusting doctors and a really, really hard time advocating for myself (I am single and in a fairly new city by myself, so this is non-negotiable). I don't trust them and I wonder if they really are taking me seriously.

3. Where do set boundries? Until most recently, I was a typical, type A, workaholic. It is no wonder I didn't hospitalize myself before I knew what all of this was. I have made significant changes to my life and my work to limit stress, but sometimes it still isn;t enough. I have not come to terms with the fact that I can't fix this. I will never just feel better and that is devastating.

Most of all, I am feeling really alone in this. Thankfully, I stumbled upon this group. Looking forward to just being able to talk to people who know what this feels like, and hopefully to figuring out what living with lupus really means. Any advice, resources, etc, etc, etc are more than welcome.

Thanks for reading.

Elleinod

debbie-b
08-05-2009, 05:28 AM
One thing is for sure, YOU ARE NOT ALONE. Welcome to WHL.
All of us here feel like you, but only some of the time, it will get better. You will battle bad days and enjoy good days. We all have them. We all had a idiot doctor and people that do not understand what lupus is. But you will learn to deal with it. We are always here, if you need to talk, rant, cry or b.... .

Debbie

mountaindreamer
08-05-2009, 06:44 AM
hi elleinod,

first, i welcome you to your new best friend , " our family of the sky"....we are here, we will always be here, and you will be surrounded by compassion and knowledge.

This process of getting a diagnosis is so frustrating and frightening....you know something is wrong, but no one can tell you what it is. Then, you get the diagnosis, and there is a sense of relief because now you have a name, but the fear increases because you are faced with the reality of such a beastly illness. One thing that i found, was that after the diagnosis, the drs. started taking me much more seriously and i never felt like a hypocondriac again.

i will try to ease some of your fears and answer your questions. Let me assure you that many other members will be along to support you in this time while you search for what your future will bring.

Your first question about plaquenil....i have never heard that anti-malarial meds only "mask the symptoms", so i can not speak on this. However, i do know for a fact that many people find great relief from this med., and i presently take it as well. you must be patient....the first couple of weeks after starting palquenil could cause some side effects such as nausea, but these will subside. Also, it can take up to 5 or 6 months for the full effect of the med to be realized. Yes, damage to your eyes is a serious side effect, but it is very seldom that this happens. We all get our eyes checked every 6 months, and the drs. watch us closely for damage.

Along with Plaquenil, many of us have additional treatments that we take. Steroids are a common treatment, some take daily, and some only take when in a serious flare or organ involvement. I avoid steroids, and my dr. supports me in this. However, i do have to take a chemo drug called methotrexate....this slows down (destroys) the immune system, thus slowing the progression of the disease. However, there are certainly serious potential consequences for this treatment as well. When the time approaches for you to make these choices, we will certainly be here to help you.

As i said earlier, now that you have a diagnosis, hopefully the drs. will start taking you more seriously. Do you have confidence in your rheumatologist....this is your team captain. It is not uncommon to try 3 or 4 drs. before finding one that fits you....so don't worry if you feel you need to change drs.

yes, you will have to make life style changes....there is a thread here about the changes that we have all made.....check this out and you will see that whereas life changes, it does not end....we just learn to adjust.

No, you do not have to stay out of the sun for the rest of your life, but you do have to protect yourself from the effects of sun. Wear clothing that covers your body, wear hats, sun glasses, and use very high spf sun block....these are crucial.

i will stop now, i have rambled on for too long....just know we are here, and we will help you....you are no longer alone.

dsunshine
08-05-2009, 10:27 AM
Hi Elleinod
Welcome to the site first and foremost. So glad you have found a home to vent, post, and find comfort and support BUT MORE THAN THAT understanding!
I have to say your story is UNIQUE as it is YOUR Story no matter how similar it is to anyone else's! Having Lupus does bring about the feelings you described and I too endured them and some times still have feelings of depression or being angry about filling Rx's or taking ALL the meds and just wanting to be normal. I do have my days when I feel like I am normal again and I enjoy them and use them like they are a FREE PASS to be normal.
I think the meds/steriods effect each person differently. I lost weight being on the prednisone and to date my sight is good and I am on plaqueniel as well. But I do go in for my lab work every 4 weeks. Yes having this disease is a downer but use this site as the senior members like Rastagirl, Mountaindreamer, Amanda, Rob and countless otheres that I can't remember (Brain fog LOL) give wonderful advice and insight, love, and support!!!
Welcome again!

Angel Oliver
08-05-2009, 10:30 AM
Hello and welcome and no way are you alone....you have us all right there with you.
I see you have been given good advice,my heads not with it but i will post again soon.Just know we all care n understand .

Love n Gentle hugs
Amanda.xxxxxxxx

elleinod
08-05-2009, 07:43 PM
Thank you, thank you, thank you so much for responding to me. I really needed that.

I have had some mixed results with Plaquenil. I was on it for a couple weeks and I had a terrible reaction to it--my hands were covered in bumps and then my palms peeled. Skin on my scalp, face and behind my ears got scaly and itchy. My dermatologist--who was the doctor that finally got my diagnosis--was really unsympathetic to this. She told me to wear gloves if it bothered me. Then had hives and some respiratory symptoms and I went off of plaquenil completely. When I went back on about six weeks ago, it was at a quarter of the original dose and it was great! I had more focus and I wasn't so tired. In the last few days I started getting the allergic symptoms again and I am starting to lose the focus and energy.

In your experience, Is that what happens when you have a flare or is it more likely the medicine not quite right?

Phylis-I am off the read the lifestyle change thread!

mountaindreamer
08-05-2009, 08:13 PM
hi elleinod,

most people suffer with side effects from plaquenil for a short period of time after starting....i don't know if your hives, bumps, and rashes are these such side effects, but i am sure someone will be along very soon if they can help.

elleinod
08-06-2009, 06:47 AM
Thanks Phyllis--I will keep my eyes peeled for a response, and I am going to spend some time today looking for a new rhuematologist.

dsunshine
08-06-2009, 11:11 AM
Thank you, thank you, thank you so much for responding to me. I really needed that.

I have had some mixed results with Plaquenil. I was on it for a couple weeks and I had a terrible reaction to it--my hands were covered in bumps and then my palms peeled. Skin on my scalp, face and behind my ears got scaly and itchy. My dermatologist--who was the doctor that finally got my diagnosis--was really unsympathetic to this. She told me to wear gloves if it bothered me. Then had hives and some respiratory symptoms and I went off of plaquenil completely. When I went back on about six weeks ago, it was at a quarter of the original dose and it was great! I had more focus and I wasn't so tired. In the last few days I started getting the allergic symptoms again and I am starting to lose the focus and energy.

In your experience, Is that what happens when you have a flare or is it more likely the medicine not quite right?

Phylis-I am off the read the lifestyle change thread!
I have been on plaquenil since Nov. 2008 no breaks at all. In my experience I have only experienced raised bumps/area rashes on my elbows, chest, and hands which ALL itch like hell...especially the elbows. Strangely the rash comes and goes away rather rapidly. To help with the itch I use Cortaid and I have been told by my Rheumy that this is okay otherwise I would scratch it all raw...no doubt cause scrathin feels so good!!! I haven't experienced flakyness or or dry scalp but i did for a brief moment experience my hair falling out in EXTREME amounts...growing back but left side of my head hair is really thin. Hopefully your new doctor willl be able to adjust your meds and get you on the right track. Sucks we have all these side effects which seem to be normal amoungst Lupus patients. We need updated drugs and not just updated but Drugs that work and more than that we NEED A CURE!
Hope this helps

BTW...GLOVES??? Is she for real...who the heck wants to walk around with gloves on all day like an old school church lady...I know I don't!

widebody
08-06-2009, 01:18 PM
We're all here to help, listen and do whatever else we can from a distance.

Everyone's lupus experience is unique, but you'll find that what you're going through is very similar to what others are facing or have faced. I can totally related, for example, to the type-A workaholic thing :)

Stay wired in here and we'll do everything we can..

Brian

elleinod
08-06-2009, 03:01 PM
Thanks Brian and dsunshine!

:) When my doctor said "gloves", I tuned out. You can make a hat look cute, but gloves? I called a dozen rheumatologists today and finally, I got an appointment with one. Hopefully she will be better.

My hair is falling out. I wondered if that was Lupus related.

Speaking of being totally type A, are there books I should be reading or other places I should be looking for information? Or is this all so specific to each person that research is futile?

mountaindreamer
08-06-2009, 06:36 PM
hi elleinod,

so glad you found a new rheumatologist....hope she is wonderful.

my dr. has me taking 25 mg of folic acid each day...she said it would help with hair falling out and mouth sores...i have definitely noticed a difference in mouth sores, but my hair still continues to gradually get thin, it might have slowed down some, but i can't tell.....it is all too depressing.

you might want to ask you new dr. if she prescribes folic acid for these symptoms.

Saysusie
08-07-2009, 11:49 AM
Hair loss is, definitely and unfortunately, related to Lupus. There are so very many of us here who have had to suffer from the hair loss. The good thing about it is the fact that, once the meds start working on the Lupus, the hair loss discontinues and the hair does re-grow.
You've been given some good advice and I hope that it is helpful to you. I am late in welcoming you to our family, but I want to take this opportunity to do just that......Welcome:yes:

Peace and Blessings
Namaste
Saysusie

Pearl
08-10-2009, 10:44 AM
Hi elleinod -

Just wanted to offer my welcome. You have already received lots of good advice. The most important piece of advice I can share from my personal experience is this - BE YOUR OWN ADVOCATE. Do not care one bit about what any doctor thinks of you. Yes, we all want to be taken seriously. And yes, we have all (I would bet on it) had a least one doctor think we are a hypochondriac at some point during this process. I learned a long time ago that the single most important thing I have to be concerned with regarding lupus is my life. That's pretty important to me. Once I figured out how much I cared about that, about actually living, I no longer cared about the opinions of bad doctors. I fought until I found one with whom I could communicate. Keep searching until you do. Treat this beast like it is the most important business of your life. When you do so, the doctors will take you seriously. Educate yourself here. Be armed and prepared about what your test results mean. Look to change your focus from illness to wellness. Find a doctor who will be your partner in creating the best quality of life you can achieve. When you need support from people who understand, come here. This too is a place of healing.

Wishing you wellness today,

Jana