Am I doing enough?

 

If there’s one thing I’m good at, it’s making sure the office chair doesn’t float away.  Other than that, and very basic household tasks, I don’t contribute much.  I feel quite guilty about being unemployed.  I am grateful we’re in a position that allows me not to work, given what’s going on with the medical crap, but it still feels wrong.  I also don’t like spending money because I’m not earning any.

I want to contribute financially, but I’m not sure how.  I’ve already eBay’d most of my belongings that were of any value.  I’m not even sure I qualify for social security disability to help with my expenses because half of my work history was ‘off the books’.  The caveat of untaxed income.  So what about trying to get a job?  Where could I work?  Who would be willing to hire someone as flaky as yours truly?  I had a discussion with Cass, as she’s being forced back to work even though she’s very ill.  I feel for her, and was trying to think what I’d do if I were in her shoes to sort of brainstorm and give her some ideas that might translate to her situation.  It got me thinking – why in the hell am I not working if I can come up with ways to facilitate it?

I would need a wheelchair, because I still can’t stand or walk for more than about 15 minutes at a time due to the tachy and since the weather warmed up my balance is way the hell off.  Manchild has had to catch me several times this week as I started to totter over, and of course there were the times he wasn’t there to catch me.  If I don’t at least have something to lean against, I’m in big trouble, so even a rollator would be fine.

I would need drugs.  I have those.  LOTS of those.  Specifically, drugs for nausea and pain.  The pain gets worse with activity, so I imagine that would take precedence.  I would need to get a higher dose approved, or try something different.

Then there’s good old Crohn’s.  Obviously I’d need to be within shitting distance of a restroom, spare clothing just in case, a stock pile of imodium, and go back on the keto diet to help make things a bit more predictable.

So far, it doesn’t sound too bad, right?  Maybe even doable.

Transportation will be a huge problem since I can’t drive, so ideally I could get a job nearby and get an early shift, or work afternoons and manchild can drive me to work on his lunch break, then he can pick me up after he gets off work.  Or find out if there’s a way that the car can be modified so I can drive it, but that would be cost prohibitive, and uh, seizures?  I can’t say for certain that it won’t happen again, and it’d be unfortunate if it were to happen while driving.

Sure, most of the time I feel like I’ve been hit by a C-5, and then others I feel like I’m on the verge of death, but I could suffer through it like so many others do.  And I could donate money to friends in need without feeling like I’ve robbed a bank.

There are other sticking points, like no matter how hard I try to control my diseases, they’re still very unpredictable.  And again, who would even hire someone with so many needs/restrictions?  And if I’m able to work, then why haven’t I cleaned house since December (holy shit…has it really been that long!?)?

If I had to work, I could find a way.  Which makes me wonder if I should be working.  Am I doing enough?  I don’t think so.  Am I pushing myself hard enough?  My body tells me yes, my brain tells me no.  I know what happens when I overdo it, and I have yet to find the line between pushing myself and overdoing it until I’ve crossed over and it’s too late.  The fact that it’s not a straight line makes it all the more difficult.  The idea the collective has imposed upon me is that my health is my job.  Man, why haven’t I been fired yet?

 

 

 

28 thoughts on “Am I doing enough?

  1. I often feel guilty about being on Disability. My best friend works for the Post Office. She works 10 to 12 hour days. She never has 2 days in a row off. She hardly ever calls me. I automatically think she doesn’t love me anymore instead of the fact that she’s tired from working! There have been some people who are either resentful I don’t work or are rude about it. They want to make sure I’m not “wasting their tax dollars”. I started working on the books at the age of 14 and worked hard until age 37 when my brain and body finally gave out. It took until I was 40 to get approved for Disability. Disability that I paid into. Your Chronic Kidney Disease is of an unknown origin? Do you have stents? My Right kidney works at 18% and my left at 79%. The Nephrologist thinks this great but said I really only have 1 kidney they count as functioning. I didn’t think it was so great. No one can figure out why I went into Kidney Failure. I didn’t even know I was in Kidney Failure! The only symptom I had was Edema in my feet. It’s a good thing I decided to go to the ER when I did. Another day and I wouldn’t be here. I don’t have high blood pressure, diabetes, or the usual causes and symptoms. I do have Bilateral Ureteral Thickening causing a blockage that no one can find or tell me about. 3 Urologists, 2 Nephrologists, and 1 Hematologist/Oncologist later and I still have no answers. I was so relieved to see that someone else is having health issues similar to mine.

    Liked by 3 people

    • I’ve heard getting approved for SSI is a nightmare, and in my case would probably be denied anyhow. I’d also hate to dip into funds that might be better spent on people who are in worse situations.

      My CKD was attributed to IgA deposits/autoimmunity and tends to get worse after I’m sick, or when my allergies go haywire. Function normally bounces back a bit, but the kidneys can only withstand so much abuse before the damage doesn’t reverse. Most of my symptoms are probably from Crohn’s, but I do feel worse when I’m in acute kidney failure. Have you had a kidney biopsy? I’m assume you have if you’ve been to multiple nephrologists, but if not, it can help them determine the cause. Most of the time, the cause doesn’t effect the treatment (or lack thereof), unless it’s a systemic illness that is causing it, then getting that under control could help.

      Then, of course, there’s a lot of stuff happening that they like to call “idiopathic”, which sounds better than “we don’t have a fucking clue” haha

      Liked by 1 person

      • I have had my kidneys biopsied, my bladder, and several of both ureters. I have Celiac that has led to other autoimmune diseases. The reason the Doctors are so confused are because they hardly ever see a 42 year old woman with both ureters blocked completely. They also refer to it as Stenosis or thickening of the ureters. My kidneys have been damaged permanently now. The biopsies showed some oddities but not the cause of the problem. I always have a low white blood cell count, monoclonal gammopathy, gallbladder disease, and a crap load of arthritis, osteoporosis, spinal stenosis and the list goes on and on. If there is one thing I hate is when they tell me it may be “idiopathic”. I don’t buy it. There are too many findings for it to be. The problem is each new thing contradicts the other. I did actually have a Doctor from Mass General say ” I have absolutely no idea how I could help you. You have a lot going on.” She also swore frequently while looking at my scans. lol My sister couldn’t believe it and was ready to slap her. You really don’t want to hear a Doctor saying ” Jesus Christ” while looking at pictures of your organs. Then she put her face in her hands for a few seconds. It wasn’t a pleasant experience. I’m the type of person that needs answers. I think that’s why I still have a problem with my diagnosis of Conversion Disorder. Your situation sounds just as bad as anyone else. It sounds very debilitating at times. There are so many people abusing the system but I don’t think you would be one of them. Good luck!

        Liked by 1 person

        • Conversion disorder? Are they for real? It sounds like you’ve got entirely too many things going on for the cause to not be organic, and I too have a lot of contradictory symptoms. Watch them try to figure out why my potassium has been high in spite of being admitted for the extreme diarrhea/vomiting. It isn’t long before they send in the psychiatric troupe. It’s so stupid. They were trying to diagnose me with a somatoform disorder before they found crohn’s, and all because I have a history of depression and anxiety. Oh, they make me so mad. There are things doctors, medicine, and science don’t know, and they need to quit blaming the patients for their shortcomings. I certainly empathize and share in your frustrations!

          Liked by 1 person

          • Unfortunately the Conversion Disorder is real. I went to 2 of the top Doctors that deal in Movement Disorders and Somatoform Disorders. After my mom passed away my hands started to tremor whenever I went to do something. I was diagnosed with Essential Tremors. I thought this was odd because this is hereditary and no one in my family has it. It also doesn’t present itself until you are in your late 50’s early 60’s. I accepted the diagnosis but then I started to stutter. Whenever I was feeling upset, sad, depressed, the stutter would start. It was to the point no one could understand me. My Psychiatrist noticed some signs that didn’t fit with Essential Tremors and sent me to the first doctor who had written articles and a book on Conversion Disorder. After testing me he was extremely excited to find someone with a true case of Conversion Disorder. He wanted to video tape me. My sister was with me and became enraged. Here I was trying to understand how my mind was keeping something from me but showing up in physical ways. All I could think was that the stuff I did remember was bad enough, what could be worse? I was crying, shaking and stuttering in his office. My sister screamed at him that I was a human being and not a freak for his entertainment. I didn’t want to believe the diagnosis so I went to another doctor who also confirmed it with tests. Usually when you are told you have Conversion Disorder it stops. It didn’t for me because of coexisting conditions. When you have Bipolar Disorder it is harder to treat. When you have medication resistant Bipolar Disorder and went undiagnosed for over 20 years it’s nearly impossible to recover. I still do what I can but I hate that when I get embarrassed or upset the stuttering kicks in. I research everything I am told by doctors. The doctors hate this. I have one that tells me I have to be my own advocate and I should research what I’m being told. As long as it doesn’t become unhealthy. I find that almost all doctors do not like to be questioned. I’ve had a doctor put that I’m difficult and demanding in my file because I didn’t want my surgery at the same hospital my mom died in and that I have had only bad experiences with. He then said it out loud in front of the team that was going to operate on me right before I was going into the surgical room. lol One of the other doctors said “She won’t pull any of that in my hospital”. Lovely.

            Liked by 1 person

            • Uh….time for the Reality Check Moment.
              Whether or not you have a conversion disorder, you have “Real” (which is medical for Seen On Imaging) physical pathology. Aside from the fact that one of my professors taught that “Crazy People Get Sick Too,” this should not even be an issue with you, unless a conversion disorder can cause your entire urinary tract to be eaten up with inflammation. I do not understand this phenomenon whereby medical personnel utilize a psychiatric diagnosis to deny the Reality of quantitative testing and imaging. This is why I never, never, never reveal my psych dx unless I need inpatient care. Instant poison in the minds of the medicos. What the hell??? If I had the physical strength I’d start a door to medical door campaign to educate everyone from surgeon too fucking psychiatrist that CRAZY PEOPLE GET SICK TOO!!!! (Slogan courtesy of Joel Pasternak, MD, Baseball Coach)

              Liked by 1 person

              • Sorry! I think I wrote my response wrong. They are not blaming Conversion Disorder for anything except my stuttering and tremors. The only time Conversion Disorder was mentioned was because I didn’t want to come out of the anesthesia. I was catatonic for a brief time. I’m up front with Doctors concerning all of my mental and physical diagnoses. I hope in the future we can have Comprehensive Care. I want Doctors to treat me as a whole not just a kidney or someone with mental health issues. This is done in many places but not here. It needs to be done. They need to know when they give me news that is upsetting I might not react like everyone else. I will cry more, start stuttering and shaking. They also need to know what medications I’m on. One of them gives you kidney stones which in my research of the drug I didn’t see. Eventually I’ll find more than one Doctor who is compassionate and sees me as a whole person. The brain is a mystery to even the best scientists and is linked to physical ailments. So I roll the dice and if the Doctor I’m seeing doesn’t respond well I see another one. Kidney Disease can cause depression to worsen. I know in my case it did. It also causes my meds to not work at their full potential. I just try to deal with it the best I can. I don’t have a lot of support but I’m still here.

                Liked by 1 person

                • You are tremendously brave to keep on going as you have! I agree with you entirely, that doctors have lost the ability to see the whole patient. I was just reading an Italian case study of a young woman who had symptoms in four different body systems, so she had four different diagnoses (which made no sense together), and was on anti anxiety meds because after all it was all in her head, since it made no sense. Finally she was seen by a rheumatologist who had a brain in his head, put two and two together and got four, and solved the mystery case. Unfortunately there’s not much to be done for what she has (hyperextensibility syndrome), but at least there is an understanding of the condition and what to expect in the future, which for me is very important.

                  Liked by 2 people

                • It’s good to hear that there was at least one person in her corner to help. If only there were more like that. It’s a slow process but there are places using the concept to treat the patient as a whole not just the sum of their parts. Unfortunately there are only a handful of these places. Of course none are near me. When I went to Mass General I expected so much from them and was greatly disappointed. They are supposed to be the best. It was such a let down. I always make sure to bring my sister or my dad with me to any Doctor appointments now. It’s sad to see how differently some Doctors behaved when I had a family member with me. My sister almost didn’t believe me when I told her how my Urologist treated me. When she came with me she could hear him in the next room berating an elderly man for wanting a second opinion. This angered her to no end. That Doctor didn’t know what he was in for when he came in to see me. lol

                  Liked by 1 person

                • OK, I need some serous hints on how to handle these cocky medicos. Looks like I’m going to Mayo. So what’s your secret? It’s OK to tell me, because I have such horrible PTSD around anything having to do with being a patient, that I just totally dissociate the minute I hear “Come on back!” I think I actually became a doctor so that I would need to see any more, but clearly this only aggravated the situation.

                  Liked by 2 people

                • The biggest thing I did was having an advocate with me. My sister worked in Human Resources for many years so she knows how to handle all personalities. She’s really good with Napoleon Complexes. lol If I couldn’t find someone to go with me I would ask the Doctor if it was ok to record our Consultation because my short term memory is bad and I would understand what was being said more clearly. If they refuse then you know you’re dealing with someone who doesn’t want their bad behavior on record. It’s YOUR APPOINTMENT. You are PAYING THEM. You are allowed to have access to ALL of your information. I download the Blue Button on Medicare.gov because I have Medicare. I can see everything they charged for and every code they put in my file. You can look up the code online for free. I’m always surprised when the first thing a Doctor puts is BIPOLAR. Even when I am not there for Bipolar I’m there for a pap smear or something completely unrelated. It’s hard when that is the first thing you are identified as. I also rely on online reviews of Doctors. I take it with a grain of salt. Patients can be difficult. I see a lot of people who chose a 5 star Doctor not realizing he only had 2 reviews. Big mistake. It’s kind of like ebay the more positives you have the better. lol

                  Liked by 1 person

                • Excellent way of doing this thing! As a physician, I would never object to someone recording the consultation. In fact, there are times when I suggest that.

                  Thank you for the Medicare tip! I didn’t even know about that.

                  Yes, having one’s psych diagnosis preceed the reason for the visit is exactly the reason I compartmentalize my disclosures. Definitely not good practice from a medical point of view, and I certainly don’t recommend that.

                  However, I read an article today that demonstrated a 40% higher misdiagnosis rate in patients perceived as “difficult.” The responding physicians defined “difficult”as anything from belligerent or demanding on one end, to passive on the other. Walking into a room with a new patient with BIPOLAR on the chart??? Instant poison.

                  Liked by 2 people

                • I agree. I noticed they change their tune when I have someone with me. My sister puts on her “Power Lipstick” (Red) and wears her work clothes when she comes with me. It’s fascinating how the Doctors respond when they think there is an intelligent person in the room and not just me. I am intelligent just more thoughtful about subjects and it takes me a little longer to say what I want to say. No one has patience these days.

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            • Aaah, in that context it makes a lot more sense. I thought they were trying to blame your kidney issues on conversion disorder, and that’s when I slammed on the brakes and thought “wtf!”. My neuropathy is documented with an abnormal EMG, but my current neuro still thinks my symptoms are psychiatric because the results of the test are not as bad as what he has seen on someone who has better functioning. Hey MD, everybody is different. It’s not a difficult concept.

              Liked by 1 person

  2. Sigh….I go through this same scenario over and over and over….I WANT to work, dammit! I miss my own profession. I miss my “horse and buggy” practice that I downsized to after I got pretty sick, only to have it ripped out from under me by a huge evangelical “Christian” organization that bought up the hospital that owned my building…And they cancelled my lease, and I had invested all my capital in it, and they wouldn’t compensate me for it, and I found out to my dismay that in the good ol U.S of A, religious organizations are above the law, meaning you can’t sue them for antitrust violations. All of which contributed to such a long and crashing breakdown, that I have never recovered.

    I hear every word of your sifting through the conditions you would need to be in place in order to work. To go to a work place, or even to work at home!

    I used to joke that if all else failed, I could always be a greeter at Wal-Mart…uh, no. I’m not capable of pulling and pushing shopping carts, not more than one or two of them a week. Most days I can’t face other humans without bursting into tears. And I never know what the ol shitter has in store for me on any one day, of course. Like you say, could always go back on the Very Low Residue Diet, blecch. I just don’t know. I used to be religious before all this happened, but I can’t buy into the “being tested” crap. Like, why? I try to live a good and ethical life. For another two years I have some private disability money coming in (you really need to get your SSDI, you do have a minimum amount and at least you would have a bit of money of your own). After my private disability runs out, then what? I gave a few bucks to a lady who was standing on the street with a sign saying she needed two operations and had no money. As I approached her she froze and clearly dissociated. I put the money into her hand–she didn’t have her hand out, but clenched around her sign–and told her, take it, it’s OK, I wish it could be more. She trembled and cried. If I didn’t have four ruptured discs in my neck I would have held her if she wanted, but I can’t, so instead I blessed her and got back into my big fat camping van where I get to sleep safe and more or less warm every night, alone with my dog. From the looks of this lady, who knows where she sleeps? And it’s still in the low 20’s at night here.

    So yeah, work. I tried to work from home for a while, but there are the predictable problems with that, and you know what yours are…I’ve rambled on here at length, but you know, it’s not for lack of longing to contribute to society, to have our own money, a feeling of satisfaction when filling out those tax forms that I haven’t had to fill out in years, because I don’t earn any taxable income…we DO want all these things. It’s just that, for some reason, we don’t get to.

    Liked by 3 people

    • Rambling is always welcome here, and I love to hear your perspective. It is tough to want something, but not be able to follow through with it. What we lack in physical ability, I like to think we make up for in spirit and compassion. I’ve always been somewhat jealous of people who have faith in a higher power, because it seems it would remove some of the burden, but that isn’t a path my mind has allowed me to go down, so I completely understand how circumstances would have an effect on your faith.

      Liked by 1 person

      • In the year I’ve been traveling, I’ve met a lot of people like us, who deal with pain and sickness. Somehow they scrape up the money for an old travel trailer that they can pull with their car, get their meds on the 3 month mail order pharmacy plan, and putter around wherever they damn feel like it. My biggest fear is being hospitalized. What would happen to Atina??? So I do have a profession: nomad.

        Liked by 2 people

        • They allow working dogs to stay in the room with their owners at the military hospitals and red cross comes around with pups to cheer the patients up, so I bet they would allow Atina to stay with you since that’s your only option. I want in on that nomad thing. I move every 4 or 5 years, but after a year I start to get antsy. Its been a year here – I’m ready to travel!

          Liked by 1 person

          • On the service dog front, yeah, whoever it is has to let me keep her by me (although since she is a very good judge of character, she sometimes growls at people I wouldn’t have the sense to growl at myself 😉 That’s one of her jobs. The things that keep me out of work are my spine, which is falling apart at an alarming rate, and my social phobia stemming from Asberger, bipolar, PTSD, and itself. Oh, and I don’t have use of my hands too much. The neurosurgeon thinks I have some degenerative musculoskeletal disorder, isn’t that nice? So I decided that being free to move around while I can would be the best medicine, and Arizona seems to agree, since they gave me a medical card and I just bought my first legal medical cannabis, a high CBD strain that is really helping the pain without knocking me too far on my ass!

            Liked by 2 people

            • Oh shit, that’s definitely not good news. How are you coping? Maybe if we hook you up to a solar panel it’ll recharge your neurological system. I tried licking a 9-volt to see if that would do the trick, but so far no dice. 😉

              I have social phobia/anxiety, and it was quite bad for years, but apathy has fixed that for the most part. I’d say it probably comes from the fact that the world is full of assholes, but more than likely it was from childhood trauma. I’ve tried to write about it, but I just can’t get it out, so here it stays.

              Yay weed! I’m so glad it’s helping!

              Liked by 1 person

  3. Ah, the guilt. No matter who you are or what you believe in, there’s always the guilt. I worked for decades in chronic pain, so I know what would happen if I was forced back to work. Seriously, you can’t really call it a life. Yes, managing the chronic pain has been my life for a long time, and for me, it’s impossible to manage the daily pain while dependent on a job.

    I’ve always wondered what if would feel like to take a vacation. While working, all my time off was for my son or for medical reasons. At one point, I thought retirement would be like a vacation, but many retirees are unhappy, so that doesn’t sound like a vacation. I’ve looked at my disability as a “vacation” from work, but just like you say, caring for myself is a full-time job. Even though I’ve never been on a vacation, I know this isn’t it.

    Like being a mother is a full-time job, even though not many people recognize that, including the government. Just like being a caregiver is often an unpaid job. Having one full-time job is hard enough when you’re in pain all the time, and two is more than I can handle. I know my limits. I’m not SuperWoman. I can blame it in on the pain, and the ineffective treatments for pain, or I can blame it on myself. But blaming myself for something that’s out of my control is very… illogical.

    I’ve decided that my contribution to this world is to be a nice person. Well, try to be a nice person, whenever I can. It’s hard to be an honest person and a nice person at the same time. 🙂

    Liked by 2 people

    • I’m the type who sought approval from others as a gauge of how I’m doing, which is about as illogical as blaming yourself for the things beyond your control. I must be on a Trekkie kick, because I’m totally thinking about Leonard Nimoy right now. Anyhow, someone in my husband’s family made the comment that it must be wonderful to sit at home all day like a “princess”, and I said, “Yeah…” because I honestly didn’t know what to say. It’s not worth it to try to explain and end up sounding like I’m making excuses. My “princess” approval rating went up after I had been in the hospital multiple times, because beforehand I don’t think anyone believed that I felt as poorly as I claimed. The whole ‘you look fine’ thing.

      Liked by 1 person

      • Your husband’s family doesn’t sound very nice. But if she called you a princess, I’d say she was suffering from jealousy. Probably because of your looks. Admit it, you do kinda look like a princess. 🙂

        Here’s your response for the next time you run into a dickhead: “When you talk about things you know nothing about, you look and sound ignorant. I can’t imagine that anyone WANTS to look that way, so I thought I’d say something. You don’t have to thank me — putting you in your place is thanks enough..”

        I think I’ve told you about this response before, which I use a lot when someone asks me how I am: “I’m still breathing, how about you?” It’s my way of being honest and nice at the same time. 🙂

        Or how about this: “Surviving is not easy when you’re disabled, but I do my best. And since Amazon starting delivering bon-bons, I DO feel like a princess sometimes.” You’ll need a sarcastic tone for this one.

        Even though I have a few of these comments stored in my memory, usually I don’t think of a smart comeback until after the conversation is over. But it’s more about an attitude than the words you say. If it was me responding to a rude relative, I probably would have smiled and said “fuck off”. Because I’m old and I don’t care.

        Or maybe something like, “If it was at all possible, I would trade lives with you… Right. This. Second. And if princesses still existed, I doubt they would say the same.”

        Because there’s nothing like the truth, bitch. 🙂

        And if you’re not afraid of the truth, you’re not afraid of anything. 😀

        (Disclaimer: Sometimes I use bad words to catch people off guard, but I’m trying to stop doing that.)

        Liked by 1 person

        • They’re….different. Luckily I don’t have to live near them for now. They aren’t all bad, some I enjoy spending time with quite a bit. They happen to be the people the rest of the family has all but disowned. 😉

          You crack me up! Other than calling his mom a bitch when I was 14, I haven’t told any of them off. There’s plenty of time for that. I need to make a guide of possible comebacks to memorize so I can say something besides ‘derp’.

          Liked by 1 person

    • and I wasn’t done with that reply, but I twitched and hit send.

      I’m still trying to figure out my place in the universe. And you know I admire honesty. People aren’t used to it, so it catches them off guard.

      Liked by 1 person

  4. You are doing the best you can do.
    Yes you can get disability even though you didn’t officially work much, it might not be much, but it helps me to feel like I’m contributing. I filed for it mainly because if something happened to my husband I would have no insurance. Now medicare is really helping since our insurance changed and isn’t great.
    I was denied first, not because they didn’t think I was disabled they had questions about the date. It was weird. So I had a hearing with a lawyer. It was a long wait before I got my hearing, but after that I was approved and had my money within 2 months.
    You have to have a doctor say you are disabled. I got it because I’m so unreliable I couldn’t hold down a job. I tried a few times, it just made me worse.
    Give yourself a break,
    I read your post and thought, yep, I’ve felt that way often.
    Now I don’t.
    Be gentle with yourself.

    Liked by 1 person

    • Thanks Wendy! It’s nice to hear from you, and it’s always nice to get more input on the situation. I go back and forth with it. We’re okay financially for the most part, and my medical benefits are great, although I’m limited to choices of questionable doctors. We are rolling in some pretty hefty debt, though. It’s paycheck to paycheck, but we get by. Like you say, it may help me feel like I’m making a contribution even if it is small.

      Liked by 1 person

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