Archive for the ‘disability’ Category

There’s More to Lupus Than You Know

May 15, 2009
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Lupus causing extended suffering

May 12, 2009

My previous post was tongue in cheek…but now, this is living hell…the constant itching is actually painful…dr has increased my antihistamine to the point that it knocks me out…when i wake up there is a 1 hour window (now) before i can take my next dose…i have to choose what feels like induced coma, or suffering…the lupus is making me suffer, exacerbating and extending the allergic reaction

Itching, Madness, and True Love (A Lupus Story in Disguise)

May 11, 2009

davidbeckham_wideweb__470x302,0

 

4:00 a.m.  – A lupus story because its about my severe allergic reaction to a lupus drug, said reaction being amplified  because the lupus has joined  with the evil allergy forces to destroy the effects of a drug intended to help me.

This has been the most miserable week of my life-..i have not been able to do anything  but lie in bed with ice packs on me to relieve the itching – every itch  inch of my body- I wake up every 1.5 hours bz of the itch – i’m on steroids and antihistamines- my face is puffed up into a balloon – my ankle is just fractured but still a pain the in ass, i have to wear a brace with sneakers- i only stayed in the hospital overnight because the doctors said they really couldn’t do anymore for me and it would take 2-3 weeks to clear up! they warned that the rash would get worse before getting better, but they did NOT warn that the itch would apparently do the same – it feels like tiny little ants crawling around beneath the surface of my skin, occasionally nibbling at my blood vessels -so at 8 am this morning Alph and i will be parked on the dermatologist’s doorstep, the doctor who saw me in the hospital, for a re-evaluation – no appointment, just begging and if that doesn’t work demanding to be seen.

Alph has been wonderful through all this. Poor man. We have a health crisis every year. Truly. But this was the firat time he had to call 911 for me.  I was commiserating with how awful that must have been to hear me fall to the floor and then come running in to find me unconscious , staring blankly up at him as he tried to rouse me. He replied  in his best John Wayne voice, but seriously, “A man does what he has to do.”   For you kids too young to have ever heard of John Wayne, he was a tough guy movie cowboy, but a gentleman on the inside with a heart of gold.

He has never left my side. John Wayne bringing tea and cookies and pasta and comfort food   and infinite patience..all with the swagger of his youth.  Always making me feel nurtured and protected, even from a barrage of disease bullets. God  I love this man.

1:00 pm – Well what’s wrong with me other than the madness factor that I expected to be refused to be seen? The office staff was very nice and so was the doctor, who none-the-less said he couldn’t do anything for me. It will take another week and a half to slowly improve and I’ve gotta gut it out.  Oh, and the ice packs I’ve been doing have made the symptoms worse due to a rebound effect.

The worst part of it all, the absolute worst, was that Alph was in the examining room and I had to put a gown on and I felt so objectified, ugly, helpless, and embarrassed in front of my own husband when the doctor needed me to stand and take it down so he could see what was going on.

Why should I care, you ask?

Would you want your Hero Prince Charming to get a fast forward of your naked self under flourecent lights, which everyone knows age a woman’s body by about 20 years in the best of circumstances? Red spots bursting out of the pink blotches on your already sagging, steroid water weight skin? What if he was traumatized by the sight? What if….you know….?

How cool that after 20 years I still feel this way about him…

Personal Stories of Lupus

May 10, 2009

Its Mother’s Day here in the USA.  I’m a mother home very sick with a lupus complicated drug reaction.  Since this is Lupus Awareness Month, I hope to blog  something every day about lupus in order to increase awareness. If you want to help me, please share the info and links on your blogs. If you are a woman, or love someone who is, you really  need to know more about the effects of this devastating disease:

Personal Stories of Lupus

Lupus Awareness Month – The Five Stages of Lupus

May 9, 2009

 

Sung by Avril Lavign

You’re not alone
Together we stand
I’ll be by your side
You know I’ll take your hand
When it gets cold
And it feels like the end
There’s no place to go
You know I won’t give in
no I won’t give in

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say (nothin’ you can say)
Nothing you can do (nothin’ you can do)
there’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

So far away
I wish you were here
Before it’s too late
This could all disappear
Before the doors close
And it comes to an end
With you by my side
I will fight and defend (ah ah)
I’ll fight and defend (ah ah) yeah yeah

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just, stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
Nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
[Keep Holding On lyrics on http://www.metrolyrics.com%5D

We’ll make it through

Hear me when I say
When I say I believe
Nothing’s gonna change
Nothing’s gonna destiny
Whatever’s meant to be
Will work out perfectly
Yeah, yeah, yeah, yeah….

La da da da, la da da da da
La da da da da da da da da

Keep holdin’ on
‘Cause you know we’ll make it through
We’ll make it through
Just stay strong
‘Cause you know I’m here for you
I’m here for you
There’s nothing you can say
nothing you can say
Nothing you can do
nothing you can do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

Ahh, ahh
Ahh, ahh
Keep holdin’ on
Ahh, ahh
Ahh, ahh
Keep holdin’ on
There’s nothing you could say
Nothing you could say
nothin you could do
nothing you could do
There’s no other way when it comes to the truth
So, keep holding on
‘Cause you know we’ll make it through
We’ll make it through

The Good News and the Bad News

April 18, 2009

 

Well, I saw my rheumatologist today. He said my blood work indicates not systemic lupus, but mixed connective tissue disease. He was quite cheery because he said it does not attack the organs like systemic lupus, so this is great news and I should be relieved. But me being me (and most of you being you) I researched it online.  

From MedicineNet:

“Mixed connective tissue disease, as first described in 1972, is “classically” considered as an “overlap” of three diseases, systemic lupus erythematosus, scleroderma, and polymyositis. Patients with this pattern illness have features of each of these three diseases. They also typically have very high quantities of antinuclear antibodies (ANAs) and antibodies to ribonucleoprotein (anti-RNP) detectable in their blood. The symptoms of many of these patients eventually evolve to become dominated by features of one of three component illnesses, most commonly scleroderma.

It is now known that overlap syndromes can occur that involve any combination of the connective tissue diseases. Therefore, for example, patients can have a combination of rheumatoid arthritis and systemic lupus erythematosus (hence, the coined name “rhupus”).”

Well woo hoo! Woo hoo!

UTI- Sick Humor

March 16, 2009

Doctor Knows Best

March 2, 2009

I Have “mild lupus IF AT ALL????”

February 17, 2009

I am stymied… I had to get a new rheumatologist (Harvard and Yale educated) for my lupus because I moved two hours from my former doctor of four years. I went to a new one very highly recommended by a dear, very intelligent friend  who is a doctor.

When I went to see him he had all my records, which he read,  but said he wanted to do his own work up  “to see if you even have lupus”. This meant a blood draw of 12 vials and a referral to a neurologist and pulmonologist. I was to call him after the blood work came in. 

I called in yesterday for the results.  The nurse checked w/him on the blood work and the reply was that the only thing of concern was my cholesterol which is off the charts and to speak to my primary about medication.
So that was IT..like the discussion was over..so i said…well, what about the lupus and a treatment plan for it and the prednisone, meds, etc?

So she went  off for quite some time to ask him  and came back and said  “the dr. said there were very minor changes and that you have very mild lupus, if that.” So I said well what about all this pain? And she replied, “Well I don’t know but that’s very good news. You know I think he just doesn’t want to say you don’t have it outright yet at this point. He wants you to decrease your prednisone from 15 mg to 10.”  Then he wants me to come in and discuss things once I see the neurologist and the pulmonologist!!!!

I know I should be happy  but.. then what IS all this weakness and pain and flares when I get an infection????????????  And what caused my stroke if I have a mild case of lupus?  

I read my previous doctor’s records which indicated I was an atypical case and had not responded to lupus medications. We had always discussed this fact. But he had never said what I found in the record, this hypothesis  that it was possibly somatization – that DREAD word meaning psychologically based symptoms-  but that he rejected that because of the history of  stroke.

So now I’m afraid I have the “hysterical woman” label even though I have these terrible symptoms and history…. Or, maybe I have something else even worse…

Your  objective thoughts.. please?

1.5 – 2 million Americans have a form of lupus

February 7, 2009

Do you even know what lupus is ? You should. It can kill you or a loved one. 

Loss: Feeling the Pain

January 28, 2009

I wrote in my  previous post, Final Words, about needing to feel the pain of loss in order to move on….well today I am feeling a loss I can’t identify…related to the present…. I know I feel it because I feel so sad, and I can feel the sadness in my chest….heavy….solid…I notice I’ve been feeling kind of angry at my body lately, how it has failed me by turning on itself and using our autoimmune system to attack it, and me. I look in the mirror and want to yell at it….WHY DID YOU DO THIS TO ME????? The research talks all about genetic markers, but I know that psychologically we can unconsciously do bad things to our bodies. I ask myself, what am I punishing myself for? Then I think maybe its not punishment, but fear causing all this in me. Fear of things I still haven’t worked through.  I also realize that at this time 25 years ago my father was dying. He died on February 5, 1984. I always get depressed at this time of year. Maybe this is all connected…I don’t know….

When I finish this post I will go to prepare for my bible study Friday night. I know that the Lord will comfort me as I read. So I have hope.

Stroke Signs

January 20, 2009

brain-stroke

If this can save ANYONE, ANYWHERE, I will be so happy….

Most people know the main signs of a stroke:

  • Sudden numbness or weakness of the face, arm or leg, especially on one side of the body
  • Sudden confusion, trouble speaking or understanding
  • Sudden trouble seeing in one or both eyes
  • Sudden trouble walking, dizziness, loss of balance or coordination
  • Sudden, severe headache with no known cause

But these are not so well known, and are routinely used in the emergency room.  They were used with me when I stroked. I actually check myself with these when I am having fears of another one:

1. Ask the person to raise both arms

2. Smile and show their teeth

3. Ask them a question that requires a coherent sentence for an answer

4. Ask them to stick out their tongue (it should come straight out).

If ANY of these are even questionable, rush the person to the hospital. If they arrive within 3 hours of the onset of a stroke, there is a drug that can completely reverse its effects.

For more information go to the American Stroke Association.

Lupus Rant

January 14, 2009

I know there are people who have it far worse than me. I appreciate that. But this morning I am feeling just so oppressed by the demands of my disease. I just spent an hour of my life, which I do weekly, filling my pill dispensers. In a few minutes, like it or not, I have to drive 45 minutes away to see my urologist, because I am one of the 30% of lupus patients who has a higher incidence of bladder infections than the regular population.  I am on high doses of prednisone again which make me hungry and fat. Meanwhile I’m trying to live a normal life, continue my professional career, and maintain my relationships with friends and family. Not to mention my sex life. I know I am not saying anything different than anyone else does when they feel the need to bitch about their chronic illness, but this morning its my turn. Lucky you I have to stop now, or I’ll be late for my doctor’s appointment!

Lupus vs Fibromyalgia Symptoms?

December 28, 2008

You know, from what I’ve read, there is much similarity in symptoms of lupus and fibro flares.  I’ve been diagnosed with both, so I find it confusing to know which is which when I’m flaring. My doctor, quite honestly and to his integrity, I might add, also finds it to be confusing.

Would you mind  identifying your diagnosis and symptoms? I will then compile them and make a front page, unifying post out of your comments. Then you, me, and everyone else who suffers from these diseases can benefit from your input.

Thank you.

Would You Want to Know Your Therapist Has Lupus?

December 21, 2008

I struggle with this one since so often I have to cancel people out because I’m flaring.  I advise them that I have a chronic medical condition which unfortunately knocks me out. But I think it also sends the message to patients that my needs are more important than theirs. People are really great about it, but it bothers me that I cannot offer the consistency and dependability people need when they go to therapy. 

For example, I was flaring last week and told people I’d be calling them today, Sunday, to hopefully reschedule tomorrow. Well as it turns out I now have a cold and still need to stay at home.  It sounds so…flaky… and the STRESS of the uncertainty only makes me feel worse .  One thing about lupus is you need to really baby your body when anything comes on because your immune system cannot  defend the body against invading viruses, bacteria, etc.

Therapists are trained to only self disclose for the benefit of the patient.  I’m thinking that if they knew exactly what the medical condition is, they would understand why I have to frequently cancel and the uncertainty of when I can reschedule. But I’m not sure if I’m considering telling them for my benefit, so they won’t think badly of me, or theirs, so they won’t feel blown off and therefore feel badly about themselves. And then I’m afraid that if they understand the seriousness of my condition, it might scare them off…

So I’d really appreciate your input on this, especially if you’ve ever been a therapy patient. Would you want to know its lupus? How do you think this would make you feel? How might you respond?  Or is that way too much information?  Do you think the “chronic medical condition” is enough of an explanation?

Thanks for any help you can offer me here.

If I Were to Die Today (Part 2 – Relationship With Family)

December 18, 2008

Well, I’m still here…stroke symptoms morphed into a lupus flare…ok, I can deal with that, not so scary. Bed and tea and my laptop…small price to pay for some aches and pain!

Yesterday I focused on the spiritual aspects of death…and my not being prepared in that regard.  But today I want to talk about my loved ones. Most of all my husband and children.

I can only write from a selfish point of view on this, so here goes: I don’t want to miss watching my children’s lives further unfold. I have no grandchildren yet. I want to know them. I want them to remember me. Yes…I want to live on a few years longer by having a place in their minds…. I want to see what they look like! Since both my kids are pretty much clones of their father, maybe some recessive gene somewhere would reincarnate my physical characteristics… Narcissistic, certainly. But truthfully, don’t most of us long for a genetic  replica when we, or our kids, are pregnant?

Not so selfishly, I worry about them handling their grief. Oh I know, of course, that we all manage to do it.  But…loss is not a strong point for any of us in this family.  It takes us a long, long time….and I so wish I could spare them what God has decreed to be necessary…(There I go again. God certainly seems to be talking to me…however discreetly…)

My husband? Oh…this is a man who does not know who he is if he doesn’t have someone to give his whole heart and devotion to. He cannot stand to be alone. He would have to, HAVE to, find someone else to spend the remainder of his life with…to give that to… I’ve told him I would want that for him. But just between us….I don’t!!! I can’t STAND the thought of another woman having what was mine…his love, him….the thought of him holding and hugging someone else…I feel sick as I write this…but I also know he would NEED that….its not about ME anymore….but I’m just being truthful..we can all say what sounds like the right thing…but truthfully it makes me feel slightly ill….

Well, I comfort myself with the thought that if I were to die today, I would pass on to paradise, to the place where dreams are made…and later, my husband and kids would follow, and however they’ve gotten through their journey without me, none of it would matter in the WAY BIGGER scheme of things.

Well, I’m realizing that in both these posts I’ve pondered dying in terms of my relationship with others.  Not a word about my relationship with myself. Guess there will be a part 3 coming….

If I Were to Die Today (Part 1 – Relationship with God)

December 17, 2008


20070315093644_stranger_fog

 Copyright Jupiter Images 2008

 

What if today is the last day of my life?

These are the kinds of things you think of when you’ve had a stroke. I’m having symptoms which are scaring me, but I’ve spoken to my internist, and my rheumatologist’s nurse. Neither thinks its an emergency. She’s comfortable waiting for the rhuematologist to get to the office in a couple of hours to run my symptoms by him.

But I’m thinking it might be an emergency. For that matter, anything in life might be. A car accident. A heart attack.  Getting struck by lightening. I got struck by my stroke four years ago this month, actually. You don’t exactly expect these things.  But once you’ve had a stroke, and you read the statistics for recurrence, you become acutely aware of your physical vulnerability and of course your own mortality.  

Most days I remember to thank God that I’m alive and alert and have no noticeable loss of physical function, from which He miraculously spared me.I thank him for my family, and my work, and for every beautiful aspect of the four seasons as I experience them, day by day.

Of the legions of doctors I’ve met with for my various health issues, no one can believe that the perfectly normal looking, active professional woman sitting before them matches the carnage of a brain in the MRI also sitting before them.

But today I’m more focused on wondering if today is the last day of my life. No one, of course, knows the date of their death. Yet every living creature, on one particular point in the line of time, wakes up one morning… and no longer exists the next. 

Think about that. Wakes up one morning and no longer exists the next.

So feeling as I am this morning, I have to ask myself…what if? And what comes to mind, first, is that I have not managed to get into a personal relationship with God. With Christ.  Other Christians talk about it but I don’t know what that means. (If my sister is reading this I’m in deep trouble!)  

A personal relationship with the Almighty????  I picture the Almighty Presence, that gorgeous glow in the sunshine, spilling through the tree leaves and the clouds. I feel Him, and I see Him, in the wind. I pray to him and to His son. I thank Them. I beseech Them. I acknowledge them. But..it doesn’t feel personal…. more like wonder from afar…

The Christians I hang out with “walk closely” with the Lord.  I go to bible study with them but truthfully it feels like The Emperor’s new clothes when they talk of their relationship with the Lord, of their experiences of deep connection with Him. I myself have felt a deep connection to nature, His creation, since I was a child. ..But that’s not what they’re talking about…. So if today is the last day of my life, and I go to meet my Maker, will He welcome me? Will he know me?

I have no doubt of heaven. None. I know. I’ve had signs. I feel it in my soul  to be true that I will be going home again. And my earthly family members who have passed before me will be waiting there to welcome me…with much rejoicing, to use a biblical word.

Then there are my husband and kids.   But I’m getting tired now, and that’s another whole post. (There will be a Part 2 to this post not long from now.)

And since I started writing this, I got a message from my doctor not to worry. No emergency.  Thank you God that its not my time today.

At least I think not.

Even White Girls Get the Blues

December 3, 2008

That title has nothing to do with my post. Its just a play on words of an old book called Even Cowgirls Get the Blues. I don’t know…that’s just where my brain went… Anyway, what I really wanted to mention as a P.S. to the Calling All Racial Minorities post about needing more money for lupus research is this:

 I specified minorities because that’s the majority of people who get it. But not all. I, for one, am Italian American.  My neighbor who has it is a platinum haired Norwegian American.  Just want to say that all the rest of us need to be heard too.

The end.

CALLING ALL RACIAL MINORITIES! No New Lupus Drug in HALF A CENTURY???!!!!!

December 3, 2008

What does “No New Lupus Drug in 50 Years” mean to you? Do you have lupus? Do you love someone with it? Did you love someone you lost to lupus?  What can you do?

And WHY has there been such a shameful lack of research??? Interesting that the majority of victims are minority women…blacks, Asians, Hispanics…. I can’t help wondering how much faster they’d be moving if the majority of victims were white, upper class men… The YouTube I’ve inserted here talks all about the difficulties of research due to the complexity of the disease and the genetic variations of the patients. But still…you have to wonder…

The Lupus Foundation of America invites you to share your story with Congress. FIGHT for more money for research!

Share photos, personal stories, put faces and details on the stats they don’t even have.

God helps those who help themselves. LET’S ALL DO IT! LET’S FIGHT FOR OURSELVES! Go to the LFA  website (link below) for details on how to make your voice be heard in Congress.

I know I will.  C’mon guys. We are all we have. Lets stick together and do this together. Look what Rosa Parks, one woman, was able to accomplish with a single act.

From the LFA Website:

November 20, 2008 marked the 50th anniversary of the last time the U.S. Food and Drug Administration (FDA) approved a treatment for lupus. Lupus Foundation of America (LFA) Medical Director Dr. Joan Merrill and LFA Medical-Scientific Advisory Council Chair Dr. Gary Gilkeson discuss this urgent issue and what LFA has been doing to bring down barriers to lupus drug development.

Homeopathic Medicine? or Scam?

November 28, 2008

Here are the facts of my recent consult. I would really like to know what you think or have experienced, positive or negative, in this area of medicine.

I wanted to try alternative medicine for my lupus since there doesn’t seem to be anything else to try except for chemo which I don’t want to do. I can still function and work and don’t want to live my life around that. I called this particular doctor of osteopathy because I heard he’d really helped a women with lupus for the past 20 years. He’s  in practice with his son,  a tech. First I met with the doctor, who spent over an hour taking a very comprehensive history.  He said traditional medicine teaches doctors to start with the symptoms, come to a diagnosis, and then treat the symptoms.  He explained that what he does is different in that he looks further back to the causes of the disease and starts his treatment there. Ok….sounded reasonable. He took quite a few vials of blood.

The next step was to go downstairs to his son and get tested for the causes. With blind faith I went, not even asking about what the procedure entailed. What it turned out to be was three hours of testing using some kind of probe on the meridians of my fingers which produced computerized data for his father. (For the uninitiated, meridians are the energy fields used in accupuncture.) This cost $550. and was not covered by insurance.

I then went back to the doctor at a later date for the results. The blood tests were unremarkable. But  the computerized meridian tests indicated all sorts of parasites, bacteria, viruses, low functioning adrenals, and lymes disease which I have apparently had for at least 8 years. I have been tested many times by my rheumatologist for lymes and adrenal functioning but he and his son explained the test was for “stealth” organisms which hide by embedding in the organs and escaping detection of traditional medical tests….He said that the hidden stealth organisms are what cause the autoimmune system to attack the body. 

He offered an eight month treatment plan, to the tune of several thousand dollars, none of which is covered by insurance. To start with, animal stem cell injections. Then various kits from his son with herbal remedies which would definitely help my immune system. I reminded him I’d come in for help with lupus and he said, “Oh? IS it lupus?” He suggested I not tell my regular medical doctor about the treatment since they’re so skeptical of alternative medicine, and then let him be surprised after the treatment with the improvement in my health and THEN tell him how I’d gotten better. (Ok, even as I write that I am embarrassed…what BAD medicine it is to NOT practice coordination of care!)

So now I finally decided to do some research (duh) and I find out that homeopathic remedies are so diluted that basically there is nothing of the original “essence” left by they time you take it. Lots of talk by traditional medicine of no research, just placebo effect. 

Responses, anyone? I would so appreciate them….

Cross

November 25, 2008

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Baby Laughing at Wii

November 7, 2008

Ok, this may be a sign of my obsession with wanting a grandchild, but I ask you….can you watch this and NOT laugh just hearing him? I hope this brings a smile, or a laugh, to you today.

 

Being Thankful for Chronic Illness

November 4, 2008

I am rushing off to work right now, so thankful to be in remission these last few weeks. But I read an essay called Being Thankful at But You Don’t Look Sick  which I’d really like to share.  Enjoy your day.

Lupus News

October 31, 2008

Headlines from the  Lupus Foundation of America :

 

“Congress Reaffirms Support and Continues Funding For Lupus Research, Education and Patient Registry

Congress has again provided funding for critically important lupus research and education programs advocated by the Lupus Foundation of America.  President Bush recently signed the Consolidated Security, Disaster Assistance, and Continuing Appropriations Act of 2009 (H.R. 2638).  This legislation continues funding for important lupus programs, including basic, clinical and epidemiological research, and public education and awareness initiatives.
Read more >>>


Fluorescent Light Bulbs and People with Lupus  

 

Some reports suggest that there may be enough UVB radiation in fluorescent light bulbs to cause photosensitivity in people with lupus. Are you one of the people affected by fluorescent light bulbs? Please share your story with us atadvocacy@lupus.org.


Save the Date for Advocacy Day 2009 — March 2-3, 2009!  

 

The Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill will take place March 2-3, 2009! Mark your calendars today!

In 2008, more than 300 people with lupus, their families, and health professionals visited with Members of Congress, and asked them to increase government funding for lupus medical research and to enact legislation that will greatly expand federal efforts on lupus.
Read what others had to say about Advocacy Day 2008.


Sign up to be an e-Advocate for the Lupus Foundation of America  

 

LFA e-Advocates are an important group of lupus activists who stand ready to spring into action when called upon. Our e-Advocates will respond to legislative alerts by contacting their federal or state elected officials to educate them on issues of critical importance to people with lupus, their families and health professionals.
Sign up today.”


 



 


The Present for You

October 17, 2008

 

Here is a present for you:

Focus solely on the present below, thinking of nothing else but the image of that present…the colors….the shapes…focus for as long as you can…and then, when you’re ready, open the present and see what you find…

 

 

In  doing this exercise you are already practicing being present…experiencing peace and release from worries about tomorrow.

What did you find when you opened your present?