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Pulmonary Rehabilitation Dropout


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#1 miocean

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Posted 21 November 2011 - 12:02 PM

I started pulmonary rehab and was looking forward to its benefits. I qualify due to Interstitial Lung Disease. Medicare will cover 36 sessions/once in a lifetime. I have 55% lung capacity and a diffusion rate of 43%. I carefully researched facilities and chose one that I felt would be best for me. My session consisted of weighing in, blood pressure, pulse oximetry with either a finger or forehead probe (I have Raynaud's and often do not get a reading from my finger), stretching, and easy 12 minute walk on a treadmill, 12 minutes on an arm bike, 12 minutes on a reclining step machine, stretching and a short education session. My oxygen and blood pressure were taken on each machine. I didn't desaturate below 92% and my heart rate and BP were fine. I rated the activities as fairly easy with mild shortness of breath. However, when I got home my legs hurt so badly I would have to go to bed and rest for hours. :crying:

I found this to be very depressing and anxiety creating. It reminded me of dialysis, hours taken out of my day in an environment with sick people and machines, then in bed for hours. I was losing 3 days of my life each week.

My achy legs started shortly after my kidney transplant over a year ago and at first I attributed them to inactivity but now feel it is medicine related. Just about all of my meds have achy limbs as a side effect. The pain is worsening to the point where I want to cry (and I don't cry). I took myself off the statin a over a week ago and have put rehab on hold, all with doctor permission. The other meds I can't go off. I didn't have a problem with my legs before, even though I was going to Physical Therapy 2x's a week and Occupational Therapy 2x's as well for about 5 years.

I went to see my Primary who spent almost 2 hours with me, going over everything. I have to go to my vascular doctor and have the pressures tested in my legs. More doctors.

I do fine with moderate walking and managing the stairs at home. I don't understand why such an easy workout would debilitate me so much. Now I just want to crawl back under the covers and hide most of the time. I know I am depressed. My doctors are not in favor of adding anti-depressants to my already too many pills. I am looking into talk therapy, have to straighten out some insurance issues.

I'm sure this is part of my cycle: the sudden onset of scleroderma with renal failure and major organ damage, loss of job and life as I knew it, years of depressing dialysis > kidney transplant, feeling so much better, trying to return to my past self, slow realization that this is not possible because I have scleroderma > depression.

I know many of you can relate...thanks for letting me share.

miocean
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#2 Shelley Ensz

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Posted 21 November 2011 - 01:11 PM

Hi Miocean,

I'm sorry you're encountering so much difficulty with this.

I know you'll keep in mind that I'm not a doctor and have no medical training at all.

But just FYI, I wouldn't consider 12 minutes on a treadmill easy, or even possible to begin with, and I don't have even a fourth of the issues you do. Every time I go back to trying to work on a treadmill, I have to begin at just 3 minutes and build up very carefully from there (one or two minute increase at a time, if I am tolerating the prior level okay), or I am laid flat for a few days and if I am not laid flat, I am suffering a lot of fibromyalgia, or joint pain, or sciatica pain or all of the above, together. I tend to max out somewhere in the 10 to 15 minute range (a few times I've managed to build up farther than that, with enormous patience and persistence), and that's your starting point, which I think is pretty astonishing!

My question is, have you tried just doing three minutes, and if so, are you able to live through that amount, and be able to tell about it the next day?

I don't know why the treadmill is so much different than regular walking, except I think I always go just a little bit faster pace on a treadmill, whereas my normal pace is very slow (more like a mosey than a walk, usually) and I am always trying to keep up to other people or often just giving up on it after hitting a few breathless paces,and lagging behind. But happily, I can walk a lot farther if I am going at a pace I can easily tolerate at the moment, and I am far less likely to suffer relapse from it, too. The experts might not consider it acceptable progress, but I do, because it works for me and I can get from point A to point B in one piece, and live to tell about it the next day, too. So progress has become much more important to me than speed; a turtle and the hare sort of thing.

You are aware, of course, I think, that they believe there may be subtle differences in heart/lung function that makes it more difficult for people with scleroderma to tolerate exercise (see our main site for more on that). So it bears looking into making sure all is okay with your vascular doctor.

I take an older, generic antidepressant for insomnia, and it is so pleasant (and non-addictive) that I think it should be put in the water supply. It gets far more complicated to find a good antidepressant after transplant due to drug interactions, but it is still probably possible with enough researching and keeping in mind that some meds can be swapped out (for example, you 'll need to keep the transplant meds but maybe swap out a calcium channel blocker for another blood pressure med, perhaps). In general there are better outcomes when talk therapy and medication are combined.

You might have already solved the problem by discontinuing the statin, though, since they can cause both muscle pain and depression. So it remains possible that you might be secretly healthier and happier than you appear to be at the moment.

You've overcome it, though, just by realizing it and acknowledging it. Now it is only a matter of time and trial as to what exactly is going on, and how you can go about feeling better. I know how everything looks gloomy under the haze of depression, but you are on the road to recovery so I'm sending lots of warm healing hugs and good wishes your way! I know you can't do a Sclero Happy Dance just yet, but I do see one in our future for you.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#3 Amanda Thorpe

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Posted 21 November 2011 - 01:19 PM

Dearest Miocean

I am so sorry that something meant to help you has initially send you into such a spin. You must have been so looking forward to feeling better and improving your health, to then end up in pain and bed ridden, no wonder you feel disappointed and upset.

You make the comment "trying to return to my past self, slow realization that this is not possible because I have scleroderma > depression." You have identified yourself that what may be behind some of this, the realisation that you can't get back what you had and who you were. Why would you because the person that you are now is a far better person because you have allowed trials to make you better! (Not that there was ever anything wrong with you in the first place of course!)

Having totally recovered from kidney failure you could have harboured secret hope you would totally recover from scleroderma. It's hard to know what we all eventually know...that ain't gonna happen.

I have always referred to my life as pre and post scleroderma making it clear to myself and everyone that pre scleroderma is over and never coming back. What I have to do is make the most of what I have post scleroderma. Actually that's all I can do!

You have had the most amazing experience, a kidney transplant that freed you from dialysis and of course you want that with scleroderma. Sure some people with scleroderma recover so well as to return to the life they had (I only know of one) but most of us don't and you're one of most of us. I know that you don't want to be part of that particular club...sorry!

Pursuing talking treatments is a really good idea, my husband is going to look into bereavement counselling for me, the first person I even met with scleroderma had bereavement counselling and found it extremely helpful.

We forget that we have lost our lives, we may still be alive but we have lost the lives that we were living prior to scleroderma, that's going to have an impact on us somewhere along the line. Let me stress that it is possible to have an even better lives after scleroderma, I insist on having one!

What you do know going into this is that you can come out the other end triumphant because you have before. If anyone can do it you can. We people with scleroderma just have an amazing ability to triumph!

Take care.
Amanda Thorpe
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#4 Joelf

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Posted 21 November 2011 - 02:57 PM

Hi Miocean,

I'm so sorry to read your post, especially as you had started so well with your Pulmonary Rehabilitation.

Amanda and Shelley have been able to give you such wise advice. I would just add what a friend of mine said to me when I was bemoaning (shame on me!!) the fact that I couldn't run and exercise as I could before I joined the Sclero Club. He sensibly suggested that I should concentrate on what I could do, rather than worrying about what I couldn't and I must admit it made me feel even more grateful that I can still have a good quality of life, even if it's not exactly what I'd envisioned. I think I'm one of the more fortunate Sclerodermians in that I was diagnosed so quickly and my treatment was so successful but I wouldn't have met any of the lovely people on these forums without Sclero, so I have a good reason to be very thankful at the way things have panned out.

I think you should feel very proud of yourself over the way you have fought back against the health problems you've had to contend with and I'm sure you will be able to keep on fighting, improving and hopefully, perhaps once you can maybe change around some of your medications, carry on with the Pulmonary Rehabilition and eventually get the benefits from it that you were hoping for.

:emoticons-group-hug:

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#5 judyt

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Posted 21 November 2011 - 07:10 PM

Hi Miocean,
There was a time a year or two ago when I would turn on the computer with the express purpose to see how you were getting on in your search for a kidney. Now you have it and from my point of view you are coping famously. Perhaps not at the rate you used to, but still getting there.

Not so long ago I was starting to get concerned about my ability (or lack of) to keep reasonably fit. I joined an international women's gym and started going 3 times a week for 30 minutes. Before long I realised that I could not cope with 3 times so I cut down to 2. Those two sessions were usually followed by a 2 hour sleep, and that in fact was the thing that bothered me most. I could accept that I would be tired but to spend all that time asleep negated the whole purpose of the exercise. I have had to give up completely at the moment but I live in hope of getting back. They say that walking is the best exercise but like many of us I can't walk far because of my faecal incontinence. Happily I am en route to having a go at improving that condition with an SNS but in the meantime I have given up even trying to do more that what I need to each day.

No Shelley I haven't got sitting disease, I have never been one to sit for much of the day. I seem to wander about the house and garden doing a little bit of this and a little bit of that and occasionally sitting at my sewing machine making something. That usually entails quite a lot of getting up and down to the iron and the cutting table so can't really be called sitting. Of course I do spend a bit of time here on the computer too as you all knowl.

We have stairs in this house but we are already thinking of moving on to a single storey home. We live in a fabulous position right by the sea and would not want to lose that, but we will find another smaller house in a similar spot. New Zealand has such a long coastline that there will be something somewhere for us. Stairs really are too much for me in spite of having no lung disease and only minimal heart disease. My legs just can't push me along, I would love to know why but I will have to accept that they just can't!

Lots of you girls out there are much younger than me and lots of you were very fit I know, whereas I have never been able to do as well as my friends, and I am probably fortunate in that way because the gradual (steeper lately) decline has been less noticeable for me.

What is important to me is to keep in touch with others. I have two groups of women friends I see every week, Stitchwitches on Tuesdays and Epsom Salts on Fridays. We sew, and talk and set the world to rights. We weep and laugh and give each other phenomenal support and in my opinion they are my family. They make allowances for me. They will meet me at my car and help me unload, and they give me the easy jobs so I can contribute too. Today's session was spent starting a Hug quilt which will be a joint effort by 11 of us, for a friend who has heard that her 30+ year old son is ill, probably terminally. Others took their sewing machines - mine stayed at home in my sewing room.

Miocean I know that you are doing things to help others, and of all the things you do, don't let that go. It is so important to move outside your own head. I know I am preaching to the converted but it does us good to write it down and read it back.

Do what you can, rest when you have to, be kind and thoughtful and the world will come to you.

Sending you all a bit of our summer sunshine
and loads of Hugs.

JudyT

#6 debonair susie

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Posted 26 November 2011 - 01:12 PM

Hi miocean,

I am so sorry you had such a bad response to pulmonary rehab, yet as hopeful as you were about the benefit it could have had on you overall, I wish you hadn't had this kind of result.

I would like to reiterate on what has already been stated; You have been such an inspiration to so many of us here on the Scleroderma Forums, just in case you may not realize it.

We stand circled around you :emoticons-group-hug: in support! You have shown us how strong and determined you really are and I am sending Special :emoticon-hug: s, to be used freely.
Special Hugs,

Susie Kraft
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#7 susieq40

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Posted 27 November 2011 - 09:12 PM

Miocean,

I'm so sorry your having so much trouble with exercise. Are you using oxygen when exercising? It takes time to build up to where you can exercise and feel like it's doing any good. Plus, I'm always exhausted after I exercise, that's why I do it before I go to bed, or do it before I take a long nap. My lungs are still at 54% and still have PH. It's really hard, and I thought it wasn't doing me any good. I've been at a standstill for losing weight, and it frustrates me to pieces to know that I am working my butt off and feel like I'm getting no where. But guess what....when I did my PFT test in Sept. my lungs are the same, but my fitness level is twice what it was when my lungs were better 2 years before.. I would have never thought that was possible. I bought a bike, and eliptical, and treadmill, so I could just go in the spare room and exercise without having to get all dressed to go to the hospital to work out. But I did graduate from the hospital program, learned to monitor my oxygen and also learned that taking it SLOW and STEADY!!! My motto...SLOW and STEADY wins the race. I will never be able to exercise at the level I would have if I would have exercised when I had good lungs! But it can be done!! Miocean, I feel for you I really do...I am where you are, except the kidneys. I too had horrible cramps in my legs while taking statins, once I quit doin that...things got a little better. I still hurt a lot, my goal is to do 10 minutes a day unless I'm flat on my back...and once I get started I'm able to do way more. I've built up now to 1 hr to 1 1/2 hours...every day. I love you and even though it's hard right now, this too shall pass, or at least that's what I keep telling myself..HUGS HUGS and more HUGS!!!

Love LOVE and More LOVE

#8 Joelf

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Posted 28 November 2011 - 07:05 AM

Hi SusieQ,

That's very good news that you're so much fitter than you were!! :emoticon-congratulations:

Good for you; your workout programme sounds most impressive!

Long may you continue to maintain, or even be able to improve your level of fitness!! :emoticons-yes:

Kind regards,

Jo Frowde
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#9 Amanda Thorpe

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Posted 28 November 2011 - 01:08 PM

WOW!!! Susieq that's all I can say. You're amazing and thank you for sharing and encouraging us all. :thank-you:
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#10 KayTee

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Posted 28 November 2011 - 05:50 PM

Miocean: You are always an inspiration to me and others with your eloquent descriptions of all you have gone through. All the posts have been sadly wonderful to read and it does help me (and I'm sure others) to read and digest words of wisdom and sad experience. I read a quote recently: She had the disease but it didn't have her.
Warm regards to all
Kay Tee

#11 miocean

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Posted 28 November 2011 - 10:29 PM

SusieQ,
I was wondering how you were doing. :emoticon-dont-know: Everything you say is so encouraging.

Kay Tee,
Thank you so much and continue to post. :thank-you:

miocean
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#12 miocean

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Posted 30 November 2011 - 09:34 PM

I stopped the statins on Nov. 8th and am happy to say my legs are a lot better. :yes:
They no longer ache in the evenings with normal exertion. The true test will be the next coming days. Tomorrow I go to my sclero center for a full day of testing starting at leaving here around 7:30 a.m. and getting home around 5 p.m. The testing is spread out throughout the day so my husband and I are going to try and explore the area around the hospital. Then on Saturday I am going into the city (for those of you not from my area, the only city is New York City :P ) and will be doing some walking. Not to the holiday areas :lol: or the Occupy Wall Street :rolleyes: but to small specialty stores and some Thai food. Both days will involve more activity so I will be letting you know how I do.

miocean
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#13 Shelley Ensz

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Posted 02 December 2011 - 01:03 AM

Miocean, I'm delighted that your legs are lots better from discontinuing the statins. Hip hip hooray! :terrific:

I'm sure you plan lots of pacing too so that you don't succumb to exhaustion. It sure sounds fun. I love Thai food, wish I was there with you!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#14 Margaret

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Posted 02 December 2011 - 08:01 AM

Hi Miocean ,

When I read this two weeks ago, I wanted to respond on two things....the statins and 12 minutes on the treadmill. My Mom only lasted two weeks on statins before she found her legs were too weak to walk much. That was her only new med so she was quick to make the connection. Second, Gareth doesn't have lung, kidney or heart issues and there is no way I could get 12 minutes out of him on the treadmill!!! I have always assumed it's the *fatigue* due to UCTD because he used to play sports so well. I'm glad to hear you're doing so well.....you're all an inspiration to me!!!

Take care, Everyone.
Margaret

#15 miocean

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Posted 02 December 2011 - 09:23 PM

Thanks everyone!

I am happy to say I was able to complete my busy day of testing at my scleroderma center yesterday, involving hours of my time and quite of bit of walking. I got up at 6 a.m. :yawn: and arrived at the hospital on time. The road I have to take turns into a parking lot during rush hours so we were very lucky. Usually I do not have my husband stay with me and he goes off and shops the ethnic grocery store in the area but I was concerned with all the walking I had to do that I might have problems and he stayed with me all day. :wub:

My day started with a 6 Minute Walk Test. This meant going from the parking garage to registration, then to Pulmonary, then to the second floor and walking at the fatest pace I could for 6 minutes. This center does it exactly according to protocol, using a forehead probe. I just had one done with a finger probe at the rehab center and desaturated to 83% after 4 minutes. I was given one with an ear probe in 2009, desaturated to 85% and put on oxygen and test that has now been determined to be invalid. The GREAT news is my saturation was 96% at the end! :emoticons-yes: That is the best it has ever been.

Then I walked back to Pulmonary and had a Pulmonary Function Test. When I entered the room I saw a large plastic box and questioned it as I have often been asked if my PFT's were done in a booth. It is called a plethysmograph booth. They asked me if I wanted to be tested that way this time and being the adventurous person I am said sure! I don't have the official results yet but the bad news is my diffusion has gone from 43% to 36%. However, I am also aware that numbers are just numbers and they can often be misleading and will wait to see what my scleroderma specialist and pulmonologists have to say. It is confusing to me to have such a high saturation and such a low diffusion. :emoticon-dont-know:

We then went upstairs to the cafeteria for a quick bite, then through the hospital and across the street to the Radiation Lab where I had a High Resolution CT Scan of my chest. I have the cd's but will have to wait for the report to see if my fibrosis has increased since last year.

Back through the hospital and down to the parking garage to put away all my heavy files, then up and out of the hospital and down the street for lunch. We have never done that before as I just wasn't capable. We walked backed to the hospital and had to go back to the parking garage because I left my script for my Echo in my bag, the back up to the second floor for the test. Back down to the car and on the way home we stopped at an orchard for apples (after all, NJ is the Garden State :happy1-by-lisa-volz: ) then back to home, arriving around 5:30 p.m.

My legs didn't even hurt! :emoticons-line-dance: I still had spoons! :spoon: :spoon: :spoon:

Today I feel like I have mild shin splints, a familiar feeling from my days of running. I took it easy today so I can be good for tomorrow in NYC. But I am not completely debilitated. :emoticons-yes:

Next week I see my sclero specialist and in January the pulmonologist at the center. I will let you know what results I get.

miocean
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#16 judyt

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Posted 03 December 2011 - 03:44 AM

Hi Miocean,

That sounds just great, to be able to get through the day and still have spoons left is a great achievement. I bet that has lifted your spirits no end. :emoticon-congratulations:

Best wishes for good reports when you get them all.

Hugs and a

:emoticons-line-dance: From JudyT

#17 Amanda Thorpe

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Posted 03 December 2011 - 01:21 PM

Fantasticly well done Miocean! Shin splints, ah yes, remember them well, they put an end to my running days before scleroderma got there!

Take care.
Amanda Thorpe
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#18 susieq40

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Posted 04 December 2011 - 09:22 PM

Miocean,

So glad you sailed through all your tests and had a great outting with your honey :emoticons-yes: I look forward to hearing what the doctor's have to say about the wonderful 6 minute walk :yes: I'll be crossing my fingers for good results. HUGS HUGS HUGS!! :emoticons-line-dance: :emoticons-group-hug:

#19 Shelley Ensz

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Posted 05 December 2011 - 07:17 AM

Hi Miocean,

I'm very excited to hear that you have your endurance back, at least enough to survive a rousing day of clinic visits. What a thrill that must be for you!

:emoticons-yes: :emoticon-congratulations: :woohoo:

Does this mean that you'll be able to pick up again with pulmonary rehab, after this round of testing is completed (if you overall fare okay)? Or do you need a minute or two to get your oomph and get-up-and-go up to speed, before tackling it again?
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#20 miocean

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Posted 15 December 2011 - 08:36 PM

I was all set to return to rehab. I called the hospital I started at and asked about starting up again and I need to submit all my recent tests and then they said they might not have room for me. Since I wasn't really happy there I decided to go back to the other hospital which I ruled out originally because they administered a 6 Minute Walk Test to me incorrectly and I was put on oxygen. My lung and scleroderma specialists have since ruled out that test as invalid, so not only did I have to carry O2 and have a converter in my house but it cost my insurance company a lot of money.

In order to return I would have to get clearance from my pulmonologist and have an appointment for next week. I happened to be there today for Nutritional Counseling and it is right at the rehab so while I was there I asked if I could see the facility. I was brought into a large area, part of which is open to the public as a gym (one of the reasons I was against it in the first place due to germs) and a side area for rehab. The people there looked old and sick (same as my last location and I found that depressing). I asked some questions and found out they would use a finger oxomiter. When I explained that doesn't work on me due to Raynauds they said they could use an ear probe. I told them that was what was used for my 6 Minute Walk Test and that it was found to be invalid by my specialists and that I needed a forehead probe. They said they didn't have them there, I said I would buy one if I had to.

End result is I left there KNOWING it is not the right place for me, I will be unhappy and my readings won't be right. I am planning on calling my pulmonologist tomorrow and cancelling next week.

I just can't justify spending my insurance company's money again.

I have decided just to work on my own for now. My husband and I have started walking into town in the evening, a delightful little place full of shops, galleries, and restaurants. I have seen the town go through several stages over the years and it is now in a revival and quite beautiful for the holidays all lit up in white lights. It is just a couple of blocks away. This time of year the way the wind whips even on a relatively mild day seasonally the beach is really cold so that is out. I am happier walking and breathing the fresh air even though I walk slowly. I have decided to do what I did when I was a runner, go for distance first and then step up the speed.

And my legs still don't hurt!!!
:emoticons-line-dance:
miocean
ISN Artist