Denial? | Arthritis Information

Sweetie; I don't know your story; but I can tell you mine. (Course I won't go into all the details)

I was dx'ed over 13 years ago. I've managed very well compared to many; but there's no doubt I have RA. I have two children and work fulltime. Up until two years ago I also worked 2 part time jobs to make ends meet as a single mother. It wasn't easy. Plenty of days I would drag myself into the house and stay in bed for 18 hours after over doing it. BUT; over all I've managed a very productive (happy) life thanks to a good treatment plan.

I won't tell you that everyday has been Sunshine; because that would be a lie. There has been months.....even years where I struggled more than others. Sometimes I walk with a limp. Sometimes I don't. My hands have changed over the years; but no one but me is likely to notice it. My back gives me horrible problems that no one can see; but hinders certain aspects of my life. Close friends and family are the only ones that know I have RA and their the only ones that need to know. Some people have an overwhelming need to tell everyone.....and although I don't hide it; I'm not anxious to share it with strangers in the grocery store. I have no need to explain why I'm limping or why I can't lift the case of water out of the grocery cart. Who cares what they think? Not me; anyway. 

Living with RA is like riding a roller coaster. Just when you think you've passed the last big hill.......another one comes around the corner. Just because you aren't facing the struggles that some here are doesn't mean you do not have RA. Some of what you read here are sever cases and many of us are unlikely to face many of those challanges. There is always a chance though.....and I think that's never far from our thoughts. Trick is not to dwell on negative posssiblities when you have just as good of a chance as living with Mild RA for your entire life.

All your questions and even doubts are normal. We all have gone through that......and honestly at times even those of us that have had it for many years still feel that way.

Stick to your current treatment. Question your doctor about the predisone though. If you really aren't that bad I'd advise to quickly get off that stuff. Save if for times when you really, really need it. We are learning more and more lately that predisone use long term is very bad for a person with a long term illness like RA. Talk to your doctor about limiting the use of that.

Good Luck!

Please don't feel guilty about your level of pain, stiffness and that exhausted feeling. Everyone understands that we have diff amounts or attacks of this 'stuff', if those who hurt more can help those who don't we're glad to do that.  I think this board does a good job of educating people, supporting those who need someone who understands and will listen,. I was fortunate for 15 years to have a mild case, controled by my great doctor with just a little methotrexate. (everyone I knew ws horrified that I was willing to take meds that 'are given to cancer patients, and that do what they do to my immmune system)

Now because of a severe flare up I take some powerful drugs, more methotrexate, infusions of Remicade (increased 3 times the first amount, and 6 times as much methotrexate.

You'll find one suggestion that goes through this board, WE all do what we have to do to control, live with this 'yuck',

your contribution is welcome to me!  You will hear from people with your level of pain and discomfort. Oh and the lack of energy may well be 'worse' than those who don't have it. Who knows?

Sarah

Thank you all SOOOOOO much!!! I feel like giving you all a great big HUG!

This has been such a wonderful place for me--I've read so much great information. Just reading everyone's posts educates me so much more!

I know I can come here and find the support I don't get at home. To my husband, it's just another complaint of mine, or another illness..he doesn't understand what I'm feeling like at all. And I don't know how to explain it. And my kids...I'm so afraid they're just going to grow up remembering that mommy doesn't feel good today, or mommy couldn't go here or there because she was having a bad day.

Anyway....thank you all again for putting things in prospective for me.

Amy

Also; try not to be overly concerned about what your children will think of you. You can be a wonderful mother to your children regardless of your health. When I was dx'ed I had  4 year old son and a new born daughter. My children are now 17 & 13 and they are both growing to be very loving and compassionate young adults. They have not suffered one bit by having a great mom that has RA.....trust me on that one.

Amy, you may want to go to www.butyoudontlooksick.com they have an awesome "spoon theory" that helps explain what we are all going through.  It may be a good idea to have your husband read through it.  It's a long road but we all get through it.  When I was first diangnosed back in January of 2003 my daughter was only 6 months old and I could barely pick her up.  Once they found the right drugs to have me take to control my RA I have been doing really well.  My husband has been with me every step of the way.  It hasn't been an easy road to say the least and many on here know exactly what I am talking about but he is slowly and I mean slowly understanding what I am going through and my daily struggles.  Him and I were talking the other night over dinner and this is the only way I could explain to him why I rarely ask for help (I am getting better though).  He's in the Construction field leaves the house between 5 and 6 in the morning depending on the job and gets home anywhere between 3:30 to sometimes 6 or 7 at night.  I dont ask him for help because the way I look at it is hes out working all day and I am at home all day.  He rarely complains about how he is feeling and his day at work and all I do sometimes is complain about how I am feeling at the end of the day and I dont have much to show for my day.  But this is what his response was....You are doing what you are able to do with your limitations.  You stay home all day with Kelsay (shes 4), bring her to school, make lunch, make dinner and you do what you can.  Never be afraid to ask for help, I am your husband that is what I am here to do.... Now would that have been his response 6 months ago? OHHHH NO but he is starting to realize that I'm not asking for help because I dont want to do something, I am asking for help because either I cannot do something or I have trouble doing it.  Your husband will slowly come along, he just needs to take it all in.  Ok now that I've really rambeled I think thats it for now LOL

Lovie- My Dr had said originally I'd probably be on the Pred. "short term"--like 6 months. But if it's not doing anything yet, maybe it's just not going to work for me right now. Thanks for the reasurrance about my kids.

Kelseysmom-- Hopefully my husband can get to the point yours is sometime. I'll check out that website you gave me too---thank you for that!  My hubby works long hours too....either 7am-7pm or 7pm-7am. Plus he signs up for overtime all the time because we need the money.....I get frustrated because I'm working full time, plus dealing with everything at home with the kids and the house...but yet I know he's working alot of hours. I just want him to know that I'm not just making this stuff up---that I truly am exhausted and sore. Mine seems to be the worst at the end of the day. He gets mad because I never want to "play." (Sorry....TMI) But that's just totally the last thing on my mind. LOL! **Sigh** We'll get it figured out.

It's rare that predisone wouldn't help some sort of inflammatory Arthritis. Maybe RA isn't what you have; who knows....but I would have thought the predisone would have made a difference right away. It made a dramatic difference for me in less than 48 hours. It was one of the ways my doctor came to the dx. I'm what they consider seronegative.

How did they determine you had RA? RA Factor?

ohh believe me i think a lot of us on here know what your talking about "not wanting to play"

It sounds like you have yourself a housefull over there!

My family Dr had sent me to a Dr. (not even sure what "kind"....just called him a hand specialist?)  suspecting carpel tunnel at first...tests ruled that out right away--which if he would have listened to me, I told him I never had any numbness, etc. That Dr referred me to a rheumatologist right away.

He started with blood work and checked me out physically. My RH factor was negative. He said that's common in an early diagnosis....they'll be running blood work again in a couple more weeks. My Sed rate (?) was really high also. I'm not sure what other labs he ran, it was a really long list. I think I still have the lab report somewhere.

X-rays of my hands ( which was my original complaint ) showed joint damage in my fingers and wrists.  My feet and ankles now hurt as bad, if not worse than my hands. The more I use my hands, the worse they get throughout the day. Cutting things with scissors is impossible...it's easier for me to type than write. If Hannah (my 13 month old) is sick or just needing to be held alot....oh my land, then it's really bad. (pushing her stroller is hard too)

But along with Graves Disease, you can have joint pain. So my rheumatologist back in Dec said we could just let me be on my Graves Meds for a few months and see if that straightened out the hand pain. It didn't get better at all.

So I guess that's where we're at right now......

Lovie- Could it be I'm not on a high enough dose of Pred? I'm on 5mg/day.

Shannon- Glad I'm not the only one out there not wanting to "play."

What kind of test did you have to have done for the CTS? Did they do some kind of nerve conduction test? My doctor suspect CTS....and I do have the occational numbness; especially at night! He advised me to wear wrist splints at night and we'd see what happens next. Curious as to what sort of test detects this.

Don't mean to confuse you even more by suggesting that if you aren't responding to the predisone you might not have an inflammatory arthritis; it's just a guess. I haven't heard of many (or any) with RA that didn't respond very quickly to predisone though.

Did you have to see a neurologist to have that test done?

Hi I took 15 preds and had an injection, to stop the pain.

Guess what, Pred, messes with your sex life!, so that's jut one reason to not get on too much and get off when you can.

Sarah

Amy--- no you tell your husband hes not the only one lol  Tell him he'll get it when he gets it and to be thankfull hes gettin it at all LMAO 

Sarah i didnt know it was the pred that messed w/ your sex life hmmm so im B*tchy for more then one reason from the pred i guess then LMAO

Yea im up to 14 (just started lowering YAY, lets see how long this lasts lol) and was at 15 and it works, a pred pak works great too. 

Lovie- Yes- he was a neurologist. I had to go look him up on google to see for sure.

LOL- I've tried telling him he's not the only one out there not getting it...but he just doesn't see the humor in it. He says he doesn't care if anyone else is getting it, he just cares that he's NOT getting it....whatever. He'll have to live with (or without I should say) it leave I guess?

Lorster- That article would be great. I had found one for the Graves that was something like "A letter to family and friends" that helped them understand the disease also...I'll do some searching on-line, see if I can find something.  Sounds like getting off the pred. would be a great thing. When he first mentioned going on it, I cringed. I then called my family Dr and asked his opinion on it....he thought it was a good starting point to relieve the inflammation I guess. I'll be sure to ask him about it when I go again.

Prednisone didn't help me, either. I don't know if a medrol pak is the same thing, I think it is, but it helped for one day only. It seems like every other time I see my RD I ask if he's sure I have RA. Including today. When I was on pred, I only took a low dosage because I was so afraid of the side effects. And when it didn't work within a few days, I went off it altogether. I don't know why these don't work for me. Lots of drugs don't. Humira didn't, now I'm trying Remicade. So far, nothing, but I've only had one IV. Some people get relief right away.

I guess maybe I'm in a little bit of denial, but my hands are getting worse, and my RD is aggressively treating it. So Amylynn, I would say that's it's completely normal to feel the way you do, as so many here have felt the same.

You have a lot on your plate, but you know, all that really matters to your children is that they know you love them.

My hands are pretty sore this morning, but again- worse now than 2 hours ago when I got up....hmmm, go figure.

Have a great day!! And again, thank you all SOOOO much for your input!

Denial is so easy when you hear about how bad everyone else is and you dont feel that bad.There are such varying degrees of this disease and its hard to judge from one day to another how you are going to feel.I denied this disease for many years as all the other people visiting my Drs office for RA looked so much sicker than me.I stopped taking my meds because the side effects were worse than what the RA made me feel. I really wish I hadnt been in denial for so long as the damage is done now .

Take care and dont give up hope

    I don't know what to say to you all who have 'tried' the meds I'm taking that work for me but not for you, it is different for every person, I guess. My next step would have been norcatics and powerful ones (they only treat the pain/brain and stop the hurting) But, the mtx & remicade are now attacking the disease.

   This takes so much sorting out and you of the board kept telling me to be patient!! and let them work, it was hard but I did it.

   Going down from 7.5 to 5mgs of pred today, after seeing my doctor he said, take a month to get off of the 5 mgs. I"LLLLLL TRy.

sarah

Thanks Lisa and Sarah- I'll hang in there!!

Lorster- Thank you so much for that article info, I'm going to go check it out right now.

Thinkthin" LOL! Glad there's another crazy hubby out there like mine! We'll be married 15 yrs in May. Just like you, never a dull moment.

What an impact that article had Lorster!!! I just laid it on the table last night...after highlighting parts that I thought would be of benefit for hubby to read. He came to me this morning and said, "You know, I need you to talk to me...tell me what you need help with, when you need help, etc." I said, " I didn't think you cared....you act like this is all in my head." He said, "I don't think that, I'm just scared. I'm sorry if I made you feel like it's in your head." He wondered what we can "look forward" to with this. I said I didn't know---I believe mine was caught early, so I'm confident that I'll be ok....but I guess I can't know for sure?

SO anyway....big breakthrough for us!! Thank you again for digging and finding that for me!!That's great news!! It makes life so much easier when we have the support of our spouse.
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oh, I wanted to say that I copied and pasted that info from the internet. Lorster, I just wanted to say that I found the article on Roadback.  It's a little gem.  Thank you for posting that info.  I didn't understand myself what was happening during a flare - sometimes it's hard to think straight in the middle of it, and when it's all over - well I just try not to think about it, or even minimise it, to myself as well as others.

 My son always seems to know when things aren't good for me - he says I go quiet!  He also says he remembers from childhood that when Mum was quiet - lookout - something was brewing!! 

Gleeps- remind me to stay away from the Klonopin! Scary stuff!

Thanks Jeanne....me too!For me, I don't think one flare is like the next, there is such a wide variety of
symptoms so it always confuses me and I question if it is a flare. If I am
nauseated and have a headache, I know it is a flare for me. I just hate that
feeling and I get depressed thinking that this is the way my life is going to
be from now on. So Lorster- Can you have a flare for one day and then feel a bit better the very next day? Or does a flare last longer than that? OR does it vary person to person....same as the disease effects each of us a little different?

I snuck off a 100 miles to a medical doctor I heard was sympathetic about a year ago, and he referred me back to a rheumatologist (who two years before said I was just "depressed" and making up my symptoms for narcotics and refused to even test me, after being referred to a rheumy by my primary).  This super secret medical doctor put me on lexapro (antidepressant that ANS son was on when he died) and clonazepam because he said a rheumatologist won't even believe a patient unless they are on antidepressants or some sort of anti-psychotic before they will test them.

Well, the first rheumy and the super secret special medical doctor didn't know that I had already taken myself to a shrink and had the Minnesota depression test administered which proved I wasn't depressed, a little worried, anxious and fearful (I was only in full blown RA with no one believing their own eyes cause I was making it all up), but I took the lexapro for about eight weeks until I suddenly became so depressed for the first time in my life it was, well, depressing.  BUT THE CLONAZEPAM slowed down the seizures and twitches I have in my first vertebrae where my RA is so very bad.  So there you have it.  They gave it to me so a rheumy would even test me, and ended up treating me.  Amazing.  And I never went back to the super secret medical doctor. 

I snuck off a 100 miles to a medical doctor I
heard was sympathetic about a year ago, and he referred me back to a
rheumatologist (who two years before said I was just "depressed" and
making up my symptoms for narcotics and refused to even test me, after
being referred to a rheumy by my primary).  This super secret medical
doctor put me on lexapro (antidepressant that ANS son was on when he
died) and clonazepam because he said an rheumatologist won't even
believe a patient unless then are on antidepressents or some sort of anti-
psychotic before they will test them.

Well, the first rheumy and the super secret special medical doctor
didn't know that I had already taken myself to a shrink and had the
Minnesota depression test administered which proved I wasn't depressed,
a little worried, anxious and fearful (I was only in full blown RA with no
one believing their own eyes cause I was making it all up), but I took the
lexapro for about eight weeks until I suddenly because so depressed for
the first time in my life it was, well, depressing.  BUT THE CLONAZEPAM
slowed down the seizures and twitches I have in my first vertebrae where
my RA is so very bad.  So there you have it.  They gave it to me so a
rheumy would even test me, and ended up treating me.  Amazing.  And I
never went back to the super secret medical doctor. 

Lorster - I see you are an RN, so you are totally exempt from my medical doctors are morons theory.  Because they are, and I love the headlines today as it sums it up:

http://www.consumeraffairs.com/news04/2007/04/drugs_doctors. html

A survey finds that nine out of 10 U.S. doctors have some kind of a relationship with the drug industry, by either accepting gifts, such as food, beverage, free drug samples, or by taking money for lectures or signing up patients for trials.

The survey revealed that the doctors most likely to receive industry payments were the least likely to be caring for the poor. For example, heart specialists were twice as likely as family practitioners to get direct payments from drug companies, although family doctors met more frequently with drug makers than cardiologists. Female doctors were less likely to receive payments than males.  (Medical male misogny, maybe we can apply for a ICDM code).

The more influential the doctor, the greater the chance to receive benefits from pharmaceutical companies. "It appears pretty clear that industry forms tighter relationships with doctors who are really the thought leaders, the ones who are likely to affect the behavior of other doctors," said David Blumenthal, director of the Institute for Health Policy at Massachusetts General, quoted by Bloomberg.

On average, physicians meet with industry representatives four times a month, and medical residents accept six gifts annually from industry representatives.   (No wonder they have no time for us patients, too busy writing scripts to qualify for that free trip to the Bahamas). 

Lorster,

I don't have anything to add to this conversation except that I find it upsetting that so many take meds and don't know what they are taking them for.  I, too, am in the medical field and when giving meds to patients, when I ask them why they are taking a certain med, the say "because the dr. is giving it to me".  There must be some personal responsibility with medical care.  That includes all aspects of medical care. 

Phats

I am ashamed (not really now that I think about it, I didn't know any better) to say that I actually worked as a pharm rep for 2 years.  I HATED it - felt like a prostitute... And I love sales in general - have always been in it and still am as a matter of fact - just not in the medical field.

In defense of the person though, who said that their doc doesn't accept samples or lunches, that is certainly possible. I did have one office (out of a two state territory of GP/PCPs) that did not waver on that policy in my two year tenure.   

Cathy~I would have told your doctors to go to hell! You had to be on an anitdepressant before they would even test you for RA? Are you kidding me? I've never heard of anything so rediculous! (Not that I don't believe you.....just that's it's outradgous!)

I'm in the small group that seems to be pleased with their doctors. I've had three RD's now. The first one moved out of state so I switched to another doctor in that same practice. Then I had to switch to the third due to insurance requirements. All three have been excellent. My current RD is my favorite so far. He always gives me samples when he prescribes something new if he has it. I personally think this is great! It gives me a chance to try something before waisting money on a full prescription that I don't like. PLUS: when I was younger.....and single and had very little money my doctor knew this. He would give me samples of things he knew I needed. Do I think this makes him a bad doctor? Nope....not one bit. What do I care if someone from the Drug Co. buys the entire staff at the practice lunch? Hell; I personally think they deserve it and hope they get goodies like that on a regular basis. Do I think my doctor makes health decisions based on those perks? Nope; not at all. So what if they get bags of pens and pads with a drug company name on it. Rarely does he prescribe anything to me that's of that same name. I really don't know how many times a month my doctor meets with these reps and I don't really care.

I don't understand what all the anger is about. There are a lot of good doctors out there; just like there are many good members of Congress. Just like in life one bad apple gives the entire bunch a bad name. Just because there is some abuse out there......doesn't mean you shouldn't still have faith in many that still deserve it.

Lorster-That's pretty much how mine seems to be acting...and then throw in the Graves Disease--so I'm not ever sure if I ate something that triggered the Graves or if it's an RA Flare. Not that it really matters, either way I feel like crap. Ok sorry everyone but I need to play catch up here lol.

My doc does not accept gifts etc from drug companies and he doesn't prescribe what is not necessary.  I am on a ton of meds because I have different issues.  Like hypertension and asthma.  Let's not forget my nerve damage.  I always know what I am taking any med for and always ask about interactions.  But I was in the medical field too.  People just follow what their docs say sometimes because they believe since they have that MD after their names and a white coat they are all knowing. 

I am one of the lucky few with good docs.  Sometimes it takes searching to get a doc that is a right fit with you. 

Things often get confusing for us all when we see several different doctors and despite what people may think their not all in one big club. They do not communicate with each other unless you go out of your way to insist that they do. I think a lot of the drug interaction comes from that.

Now if you just saw one doctor for everything then it wouldn't be unreasonable to think they should be on top of all this stuff.

I see 2 docs and they communicate very well with each other.  They also used to work together until my RD branched off into his own practice.  I wonder why docs do not communicate with each other.  What makes them think they shouldnt when our pcp's are the ones to give us all of our referrals?  They need to work together as a team for our health.  I guess if mine didn't communicate as well as they do I would just get my records and hand deliver them to the doc I am seeing.  We have to be so proactive for our own health and safety. 

My doc has often checked in front of me for any med reactions I might have with adding a new med to my present collection.  I also ask him about it.  I know I could only take prozac when I needed it because he said anything else might interact with my hypertension meds.  I do have active tremors tho from my meds.  I will live with that so I can get out of bed every morning.  I wish they could come up with stuff without the bad side effects.  URG!

Lovie - its great you have found such wonderful medical doctors and are having such great success with your disease process.  I wish that for every one of us sufferers of autoimmune diseases.  I had wonderful doctors in my first 43 years living in Alaska.  Then I moved to Flor-e-duh, the Sunshine state, where sunshine sets off lupus and fungal infections abound, but I guess that part was missed in the FL CE courses and State medical exams.  

Since I refuse to complain without taking action, I have recently written the new Governor's new (and first ever) State Surgeon General (thank gawd another Bush has finished ruining another State) and actually got a reply that it might be a very good idea for the doctors in Flor-e-duh who moved here because they failed to make it in regular situations could use some courses on how SUNSHINE affects the millions of newcomers the Flor-e-duh Department of Tourism is urging to visit and stay to live. 

Thank goodness I snuck out to the ghetto Hispanic/Haitian part of town and found a South American doctor who recognized the fungal infection in my mouth.  Two leading hospitals, a dentist, an oral surgeon, and six primaries were stumped, but then two of them had the wrong chart until I finally guessed from the weird questions they were examining the wrong patient to the chart in their hand.  And that durn diagnostic clinic that caught a rheumatoid nodule in my hip and typed up the report in the wrong area.  Took five MRIs before they figured out why it had magically disappeared, then reappeared when they imaged the right spot.  Oh, and let's not forget the pharmacy that sent me home with someone else's script.  Good thing I looked at it closely when I put it on the shelf.  It's always something in Flor-e-duh.  I miss the great medical doctors on the West Coast, there's some non-morons.  Cathy

I had gone through excruciating pain of joints, muscles, veins and nerves, was hopeless to suffering and bedridden. But I am extremely lucky to have explore and find wild lingzhi.

God is great to create nature that can counter balance all diseases, I believe. Nature has its power and equilibrium to chronic diseases.

If one does not believe in it, how to know it and get well? It pays to learn, explore, find, and use it. Science cannot fix it nature can.

[QUOTE=miles2go]I live in Florida too, and I love my PC and my RD. They have been very caring and concerned about me, and have worked hard to figure out what's going on with me. In fact, when I move to Oregon I want to take them with me. Now, I have heard lots of bad things about our local hospital, and I've told my husband that if I get hurt or sick and can't talk, make darn sure you take me to one of the hospitals in the next town. [/QUOTE]

we must live in the same town - thats what the locals here say too - dont go to the local hospitals, have someone drive you as far away as possible from the hospitals here.  comforting. 

You can have a rheumatoid factor and no ra.

If your mom has ra, you can have a factor without symptoms, you can also have a factor with liver, kidney or heart problems as well as other inflammatory disorders.

There are new inflammatory disorders popping up daily and i believe it to be a result of pollution, pesticides etc.

Docs like the easy route.  If it looks like RA and the factor says RA, then they go with it.

The truth is, doctors don't know anything, so they shove us full of pills to fix it.

I get worse with pills which confuses my doctor.

But, putting chemicals in our bodies when it is said that chemicals sauce inflammation disorders, it just doesn't seem like the right thing to do.

Jeanne,

I agree!!!!  I have an excellent group of physicians.  I also think it is up to us to find a physician/team that works for us.  I can't say enough good things about my team.  I also think that we "patients" get something in our mind and if we don't hear what we want, we get frustrated.  On the other hand, it is our body and we need to be our own activists!!!!

Phats