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dnvrsangel
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/6/2010 9:51 AM (GMT -7)   
Sorry to bother ya'll, but I am a newbie to this site.
I have been having an unusually stretch with this flare -- but let me preface by explaining what is going on:

In Sept 2009, my father was diagnosed with advanced pancreatic cancer that has moved to liver, lymphnodes and lung. He chose NOT to go thru chemo and instead chose to do things that he wanted to do for the remaining months.

In Dec 2009, my very best friend in the whole wide world, little sister & her family had to relocate to Alabama. We have lived here all our lives and her 2 boys have literally saved my life -- and been a part of my life since the moment of their birth. Their family has always lived 20 minutes from me - i could stop by, be there to help them, etc. Needless to say, having this happen has broke her heart and my nephews as we are all very close to our father.

Our mother passed from breast cancer that moved to brain, bone and lung in 1987, so we have been a family that was brought together in tragedy and seen the joys of grandkids/nephews and sharing our lives.

Needless to say, watching our dad suffer and shrink and get sicker and sicker has not been easy, but combine that with saying good bye to my sister and my nephews has changed my whole world. I have had numerous phone calls from Alabama where either my sister or one of the nephews is having a 'meltdown' of how horrible it is there, how they want to come home, etc. I listen and do the best I can to help them thru their meltdowns -- and when I hang up, I cry to the depths of my soul -- cuz I want them back here too -- but I would never say that to them.

Over the past month, my symptoms have just multiplied to the nth degree, and the one thing that I know is that stress plays a huge role. I was supposed to go see my dad today, but because my symptoms are so bad, and our agreement was if there was anything off base at all, do not go see him. He can't afford to get sick at all.

My question to anyone is this: part of the symptoms I am experiencing along with the swelling, pain, rashes, is that I cannot get warm. When I go out to walk the dog, I have 4 things on under my huge winter coat and I come back and just cannot get warm. I do get night sweats horrible -- but its the cold and the itching that is driving me nuts. I am wondering if the sadness; the pain in my heart -- its a phyical pain when I think of my dad and my sister could be exacerbating everything. I saw my dr - and found that i am anemic on top of everything else. I want my mind/body to be as one, but I think they are in two separate places - (I know -- DUH, right).

Anyway, any suggestions for this horrible itching that is occuring with this round would be helpful. The rashes are red/white bumps that cluster on my arms, face and legs. I'm kinda used to them, but now I just want to be able to see my dad and not be so miserable.

I apologize for dumping.
I hope this is safe.

Thank you in advance.
Patty
A smile means everything to the one who receives it.
_____
Lupus SLE, Bi-Polar (diag 2001)


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 2/6/2010 10:04 AM (GMT -7)   
Welcome Patty. First off I am so sorry for all that you are dealing with. ((((HUGS)))) Have you seen your rheumy or pcp, lately. I think you should print out your post and go in and discuss it. You are dealing with much more than your illness and that will cause additional problems!


Hope you feel better, soon.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


dnvrsangel
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/6/2010 10:09 AM (GMT -7)   
Thank you for responding. I do have an appt set for Monday -- and they are aware of what I am dealing with. I had to go see them the day after I helped my sister and family move out of their house here and cleaned it before they took off. He increased my anti-depressant, gave me another round of prednisone and then gave me Celebrex -- but I found it has some pretty awful interactions with some of the meds I am on. So I had to go back and give him a peice of my mind. (I'm learning I have to stay on top of these things as well as the doctors).

Anyway, I am probably feeling the symptoms more heavily today because I could not go see my dad. So I apologize for not really realizing that my sadness is more than likely making things worse and just hang in there until Monday.
A smile means everything to the one who receives it.
_____
Lupus SLE, Bi-Polar (diag 2001)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 2/6/2010 10:34 AM (GMT -7)   
Stress and worry does play a huge part in how I feel - in keeping flares at bay and under control.

We often have situations that are out of our control - like all the things you are mentioned that are going on with your family.

For me, I've learned that just because something is wrong does NOT mean I need to worry about it, or "worry it" like you'd worry or pick at a hole in your jeans.

Yes, it's sad that you can't visit your father today. But you can't change that fact, so why think about it all day and make yourself even more stressed and worried?

I don't mean that in a hard-hearted way, just making a point that some of the stress/worry can grow much larger than it needs to be. You can't go, you need to take care of yourself. So concentrate on that - there is a saying "keep your head where your butt is" - which means think about where you are physically at and what you are doing or can do there --- don't think about things that are physically separated from you that you can't do anything about right now. It's a way of thinking that takes practice, but it helps.

Another tool is to let yourself feel really sad about it for a timed period - like 5 or 10 minutes - then you've honored the feeling , let it out, and can go on. For a long while when I was grieving the loss of my pre-lupus life, I allowed myself to cry in the shower. But when the shower was over, I had to go deal with the day and whatever that day brought me.

There was one other thing I wanted to add, but the fog has come and I can't think of it. Sigh.

Take care of yourself,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/6/2010 11:16 AM (GMT -7)   
Hi Patty, welcome to the forum. This is a great place filled with wonderful, supportive people, I really hope you like it here.


(((( hugs ))) I am so sorry you are having such a hard time right now. Unfortunately stress is one thing that does not go well with lupus but it's the hardest thing to avoid. We all have stressful moments in our lives, we just have to deal with it the best we can. Guilt I think is the hardest, but Lynnwood is right you have to realize you are doing the best you can and don't beat yourself up (I know it's hard). Take a nice hot bath, drink some hot tea and take good care of yourself and get better so you can see your dad.

It sounds like you have a wonderful family and offer great support to your sister and nephews, just keep doing that and I think it will get easier for you. We're so lucky this day and time, we have the internet, cell phones, etc so it's easier to keep in touch with our loved ones. Maybe you should get a webcam for you and your sis that way you can "see" your precious nephews and they can "see" you when ya'll talk! I don't know sweetie, I'm just throwing out ideas here, I know your heart is broken and I will be praying for you and your family. Take good care of yourself and keep us posted on how things are going. :-)
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 and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


dnvrsangel
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/6/2010 11:17 AM (GMT -7)   
Lynnwood,
I love it -- no holds barred -- and that is exactly what I needed! I was having a patty-pity-party and yes, it does not do any good. I have now, after reading your reply, put my 'man' pants on and have decided to fluff my pillows and fluffy bed, get my tea, and get into comfy clothes and let the day just be 'me day'.

THANK YOU FOR YOUR STRAIGHT FORWARDNESS!!!
I sooo needed that smack upside the back of the head.

And may I wish all who have replied, a truly wonderful Saturday -- where all find peace, relief, love and joy.


(((((HUGS))))))
A smile means everything to the one who receives it.
_____
Lupus SLE, Bi-Polar (diag 2001)


dnvrsangel
New Member


Date Joined Feb 2010
Total Posts : 12
   Posted 2/6/2010 11:33 AM (GMT -7)   
Hi Stacie,
First off - I love your scripture choice -- its my mantra!! <3

Secondly, I set up all their computers/lap tops with Skype, so that we can chat and see each other.
You are so right -- today's technology makes you feel like you're there.

I talk to them daily -- still -- just not 20 mins from me to go over and have dinner or wine and chats or texas hold em or football games. But, in the big picture, stepping outside of myself, I am blessed beyond blessings and know that tomorrow will be a new and exciting day and that there are many people truly suffering (Haiti, those who are terminally ill, homeless) and that this too shall pass in time.

I cannot believe that in the short amount of time I have been on this board and poured myself out to you, that I am 180 degrees better in my thoughts/mind than I have been for the past week. How can I ever say Thank You enough for this???

Thank you all so much. Each of you touched me -- and I do feel this is a safe haven -- and that is not easy for me to admit.

Love,
Patty
A smile means everything to the one who receives it.


_____
Lupus SLE, Bi-Polar (diag 2001)
Drugs: Plaquenil, Propranolol, Xanax, Prednisone, Lamictal, Synthroid
OTC/Natureopathic: Bayer Aspirin, Advil, Omega3, B-complex, C, Acidolphulus, Calcium (magnesium & zinc), Vitamin D drops


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 2/7/2010 5:48 PM (GMT -7)   
Hi Patty,

First, I just want to say how sorry I am about how much you are going through with all the things going on with your dad and your sister and your family. I can truly feel the sadness in your post and it breaks my heart especially that you cannot be with the ones that you love right now because of how you are feeling.

I agree with everyone's replies that you need to try and let as much stress go as you can. You need to remember that there are a lot of things that are beyond your control and ironically that will help you get things under control. Taking care of yourself is what you can do and is in YOUR control and will also make your family feel better for you as well.

I'm glad you were able to find this forum. As you can see, there are many wonderful people here and they have helped me tremendously. I have taken a hiatus from the site... big mistake I realize because reading here reminds me how much I need this and the support. The people are a truly a gift and blessing.

(((hugs))) to you...

Des
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 5 mg/day, Methotrexate 10mg/week, Arava 20/mg (what next???), Vicoprofen PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

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