So we’ve (as in my husband and I – we are both teachers) been on summer break almost a month now. It has been pure heaven. What have I been doing? Producing? Well absolutely nothing, my dear friends. I’ve had some doctor appointments, dentist, eye doc, you know, just those things that have been impossible for me to manage while working because of the massive fatigue.
But otherwise? I have nothing to show. And how do I feel about this? Delightful!! Fantastic! Superb! It is down right, totally fine. I used to feel guilty about not doing anything, or not being productive every minute of the day. I was always busy. Now, at the time, I enjoyed being active, working, exercising, socializing, and such. But Lyme disease changed all of that.
Over the years (even before I knew I was ill), I’ve struggled with a lot of guilt and angst about not doing enough (these are, of course, self imposed standards of “enough”). I would push myself, as I always have, to make “things happen,” to “get er done” as we say in Texas. While resting, I would stress out about the things I had (self imposed!) to accomplish that I hadn’t completed. Then came along nausea, headaches, joint, pain, severe fatigue. Well, all of this made for a witch’s brew of toil and trouble!
Now, I admit, it has taken time to make this change and there are still times when I click into that previous me mode, and I take it to the limit. It’s usually not a good thing though and if I can catch myself before that manic phase kicks in, well everything is better overall.
Looking back over my 15 years in education (I worked 10 years outside of education so I most definitely appreciate the time off), I realize that I have worked almost every summer for the first 10 years. First, out of necessity, and then, for the extra money and experiences. These past 3 summers of Lyme have been about treating and resting. Actually, the first summer after being diagnosed I taught a 3 week class. What was I thinking? At the time, I thought, oh good, extra money and this Lyme thing will probably be done by the end of this summer after treating for about 4 months at that point. HA HA!!! That was BEYOND wishful thinking for reals!
Anyway, I know this post is kinda all over the place, but I guess one point I am trying to make is Take it Easy. Don’t Kill Yourself trying to do everything you did before. Your body has to heal. You beating yourself up about it is certainly NOT GOING TO HELP your recovery process. Believe me, I learned this the hard way.
What are some ways you treat yourself well? In what ways are you kind to yourself? Please add your ideas to the comments below. 🙂
Since I have some time to do more research right now and the motivation to do so, I have been digging into the aspects of the Lyme controversy in our country (USA). I have been seeing many posts and articles recently that in some way or another compare Lyme disease and its prevalence to that of several aspects of AIDS epidemic here in the USA. As a young 10-20 year old growing up throughout these crisis years, the epidemic was not only the insanely tragic, it was a completely mishandled disease from the start, and ignored way too long by the science and medical fields, think CDC, think Infectious Disease Society of America, think NIH, and on and on, thus costing thousands upon thousands of lives. I just wasn’t so sure that comparing these 2 epidemics would work logically.
But what are some reasons I thought this analogy wouldn’t work? Well, Lyme doesn’t necessarily work as quickly in killing the body as AIDS has and still does (although now we have many ways to treat this infection so there are less deaths, thank goodness). Lyme is a different animal in that respect. The dead bodies of Lyme victims are not necessarily piling up on anyone’s doorstep. We don’t see Lyme disease in the news every day like we did with AIDS. Also, I felt that somehow by comparing the two infectious diseases that I was somehow trying to diminish the horrendous impact that AIDS made on people and their families, and especially on the gay community. I have no idea why I felt this way. I just did. Actually researching though has led me to a new conclusion.
In fact, Yes, the Lyme epidemic is in many ways VERY similar to the AIDS epidemic.
Let’s roll it back a few years, I mean DECADES.
“Besides Acquired Immunodeficiency Syndrome (AIDS), Lyme disease is now the most important “new” disease facing us today.”
Let that just simmer for a moment. “Most important.”
The above quote is taken from an unclassified scientific report conducted by our military. The report is titled, TICKS AND TICKBORNE DISEASES AFFECTING MILITARY PERSONNEL. Written in September 1989, this report is ” Approved for public release; distribution is unlimited. Conducted by Jerome Goddard, Ph.D. Medical Entomology Section, Epidemiology Division, USAF School of Aerospace Medicine, Human Systems Division (AFSC) Brooks Air Force Base, Texas 78235-5301.
Again, this extensive report was written in 1989 after extensive research. By our military. Here we are, almost 30 years later, and let me impress upon you, dear reader, there has been MINUSCULE, almost NIL, progress in researching and understanding of this disease, accurate testing and diagnosis of this disease, and in the treatment of this disease.
In 2013, the CDC reported findings from 2 separate entities that there are approximately 300,000 + new cases of Lyme disease every year. Please find those reports here: http://www.cdc.gov/lyme/stats/humancases.html. The CDC states that it receives about 30,000 cases of Lyme a year (this number is very low as these are only cases reported that meet the almost impossible requirements to identify Lyme set by IDSA.) The other reports the CDC lists on its page are both positive tested Lyme cases and clinical diagnosed Lyme cases, thus the 300,000+.
As Lyme sufferers, like our fellow AIDS victims, we are:
And yet. Here it is 2016. Absolutely nothing has changed. Just like AIDS sufferers, Lyme patients are shunned by doctors who have no experience with Lyme at all, or who rely strictly on the CDC testing criteria and the IDSA treatment guidelines. Even after all of these years, IDSA has yet change any of its treatment guidelines since 2006 when it published its dictated, repressive, and self-serving protocols. We are not treated well nor correctly by the medical field. I myself have been to several doctors who did not believe me nor my symptoms and just blew me off. We are labeled as hypochondriacs and/or attention seekers by both the medical community and our families and friends. Not being believed about a sickness that is so REAL is devastating both physically and emotionally.
Similar to AIDS patients in the early 80s and into the 90s, Lyme victims are not receiving the needed treatment to assist them in healing. Since there is so little being invested in Lyme research and understanding, patients must go to extreme lengths to find a doctor who will take them on and treat them as needed according to many skeletal, neuro, cardiac, and on and on manifestations of this disease. Lyme Literate doctors or LLMDs, do not take health insurance because of the possible legal implications. There have been many doctors brought before state medical boards and stripped of their medical licenses because the doctor had not followed the strict IDSA treatment. So our treatment, if we can even be diagnosed correctly, is extremely limited. Many of us seek our doctors in other states and in other countries.
Like many of those ill with AIDS, we are denied at every turn while trying to get diagnosed and treated promptly (this can happen via better testing and meticulous review and understanding of clinical symptoms). We are told that our symptoms are psychosomatic, all in our head, and we are brushed off or completely misdiagnosed with an autoimmune disease of which Lyme can and is in many, many cases, the root cause, such as Lupus, Rheumatoid Arthritis, MS, ALS, Fibromyalgia, or Chronic Fatigue just to name a few. We are denied coverage by health insurances due the published treatment guidelines from IDSA a DECADE ago. We are denied the opportunity to keep our jobs, our families, and our dignity.
4. (we are) DYING.
But, people might say, well, we never really hear of anyone dying due to Lyme disease whereas throughout the 80s there were reports every single day about AIDS causalities. This is true. First and foremost, I will say again, all aspects of Lyme are being silenced on every front, from politicians to medical practitioners, from health insurers to the media outlets. But the biggest reason we do not hear about Death by Lyme is because an exorbitant amount of Lyme disease sufferers take their own lives. We take our desperate matters into our own hands. Suicide among Lyme victims is in itself an epidemic. Much of what we know about this is anecdotal, again, due to lack of funding and research. For more information, this is a great start“Lyme Disease and Suicide, an Ignored Problem.”
These are just a few things that Lyme disease and its victims has in common with AIDS and its victims. And to refer back to the quote at the beginning, we’ve known for over 30 years that Lyme disease is an EPIDEMIC.
Is Lyme an epidemic? Yes, it is and we’ve known this for over 30 years! Unfortunately, it is a silent one that leaves us rotting from the inside out, slowly but surely. Hopefully, like the AIDS community, the Lyme community can continue becoming a formidable movement, one that will hopefully save lives now and in the future!
Do you have any other examples of how these 2 diseases are similar? Or different? Could or should we possibly as a community learn from the AIDS epidemic and how it was forged into a massive movement? Just having all kinds of thoughts on this topic. Please leave a comment below. Thanks for reading. Peace – Belle
As with most medical conditions, media stories related to Lyme disease generally take one or two of three directions:
General overview and prevention
Human interest (frequently involving a celebrity story)
Occasionally (most often local media in areas affected severely by Lyme disease) stories relating to Lyme disease politics and controversies
But Lyme disease is not a typical medical condition. A number of characteristics make coverage complex, but also offer opportunities for provocative, responsible journalistic investigation.
According to the CDC, Lyme (Borrelia burgdorferi) affects over 329,000 new Americans each year.
Certain regions of the country, particularly the Northeast and the Great Lakes regions, have high prevalence of Lyme disease transmission. However, Lyme has been documented in the majority of the country and is a growing, emerging threat.
“Lyme disease” is entirely unique among diseases in that the common term refers to a number of different possible infections transmitted…
Today has been a tough one symptom-wise. Since we are on break, the last few weeks have been pretty sweet. I can rest when I need to so this helps immensely. But today. Oiy.
I’ve had overall soreness since I awoke at 5 a.m. My lower back, hips, right knee, and ankles have been aching. I canceled an appointment today because, well, yeah, I wasn’t making it. The bed has been my constant companion today along with 2 heating pads and some medication. Oh and some loyal puppies. Maybe I’m herxing. Its been a week or so since I’ve had one. IDK.
But tomorrow is a new day. The quote above just spoke to me in all the right ways. I hope all is golden in your neck of the woods. Peace, friends -B
P.S. Pups in a row from top: Chino, Pico, Boo Boo. 😍
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As a recently inducted member of the Chronic Illness Club (CIC, if you will), I joined several online support groups. And now, 3+ years later, I see many posts about this topic. Many times, as Chronic Illness People, we struggle with how to respond when someone asks us how we are doing. Why do we struggle? Because all of the time, most of the time, there is some pain or symptom(s) we are dealing with at the moment. So when we are asked this question, we feel trapped. We debate on what we should say: Should I say “I’m fine” even though I really am not? Should I say “I’m good” and hope that next time, if I say I am not so good since chronic illness symptoms wax and wane constantly, the other person will understand? For those who have never had nor been around someone with a chronic illness, it sincerely can be a difficult thing to understand completely.
If you have a chronic illness, then quite possibly I am preaching to the choir about the misunderstanding part. And many times, as members of the CIC, this is where we can severely get bogged down in these encounters with our unrealistic expectations, our over-analysis, and our misconception that there is a lack of empathy from others. Yes, there are times we will have encounters where the other person does not meet our minimal expectations,where this other person does not empathize at all. But I hope I can convince you that these negative encounters are or will be guaranteed to be few and far between after you check out my tried and true tips! So without further ado…..
3 Tips for Responding to “How Are You Doing?” :
1. “I’m OK, how are you doing?”
While this may seem like is an obvious one, let’s explore the root of why we may not want or don’t use this response more often and why we often are frustrated after we have the interaction. As CIC members, sometimes, we feel guilty merely stating “I’m OK” because in truth, we aren’t. Many times we are dealing with invisible symptoms, ones that can be very painful and/or ones that make us feel terrible inside such as headaches and nausea. Somehow, we feel that if we do not respond with the absolute truth that we are lying. On the other hand, sometimes we use this response but we really mean, “I feel like CRAP!” and when the other party doesn’t read our mind, we get frustrated, angry, and hurt. We think that the other just doesn’t care about us because he/she didn’t “get” that we merely stated the pat answer but expected a much different response. I know I have done this many times as I have tried to navigate chronic illness and communication. It’s tough. But, none of us are mind readers. If you want someone to know anything, you must tell them in concise words. That’s just how it works.
2. “I had a rough day yesterday, but I’m doing a little better today.”
With this response, perhaps it will feel a bit more authentic and truthful. We have days, hours, minutes, where we have relief, and we can enjoy ourselves. But those moments can change on a dime as we well know. One of the hardest things, I think, for others not in the CIC to understand is how quickly symptoms can change. It was a challenge for me when I first became ill to get the hang of this game! One minute I can be decent. I can hold a conversation with absolutely no problem. Yet, not 5-20 minutes later, I am suffering severe nausea, and I am experiencing word-loss. This occurrence is hard enough for those of us experiencing this to discern, let alone someone who had no idea how this works. Personally, I like this response or a modification of it because I’ve found that people can understand it and relate to it on some level. Another version of this might be “I had a great day yesterday, but today is tough.” Most people get this kind of a statement.
3. “I’m really not doing too well today, but thank you for asking.”
This may result in the other person not knowing how to reply, but in my limited experience, people get this one as well. While you are not explaining the sordid details of why you are not feeling well (you can save that for your BFF who REALLY gets it), you are telling the person, hey I’m not doing too hot. Also, you are acknowledging his or her effort and thoughtfulness to check in on you. Look, bottom line is that if every interaction with us becomes a negative or an uncomfortable one for the other party, it probably won’t happen much, if at all after awhile. This is just human nature. We move towards positive interactions and away from negative ones. Granted, sometimes this can trigger more questions, but maybe that is a good thing! It can open the door for us to have a candid conversation about our illness. This can also lead to more positive interactions, as well as more understanding and empathy.
Regardless of how we respond to the question above, in the end, it isn’t the other person’s responsibility to make us feel a certain way, nor his or her obligation to “guess” what we mean. I know, I know. Psycho babble. But it is to our advantage if we can make these interactions more positive and less stressful for ourselves. All in all, others are sincerely trying to be kind and caring. While this isn’t as easily done with us, it can work. These small and yet important connections with others can be spirit lifting. It can help of feel connected to something bigger than ourselves. It can help us feel less isolated and less misunderstood.
Do you have any tricks or tips to add to enhancing communication with others? If so, please leave a COMMENT! I would love to hear about other techniques.
On a final note, I am on summer break from teaching high school. I just had a colleague text me, “Just checking on you and your health. I hope hope you have been able to relax!” I am replying with, “Yes, indeed! Summer break is so wonderful. I can rest whenever I please. Thank you for thinking of me. How are you doing?”
This completely made my day. Wishing you a both a painless and joyful day. -Belle
With so many things I can do with my time, I have quite honestly never been bored. Even in waiting rooms, hospitals, airports. I’ve always been an active person, so when I got sick or better yet, progressively became very sick, activities began dropping off to the point that my main activity now is work.
These past few years I’ve spent much of my time not at work in bed. Still, I could never say I have been bored. In pain, nauseated, yes. When first diagnosed, I really struggled to read anything more than a few sentences due to the severe brain fog and lack of concentration (many are diagnosed with ADD before Lyme disease).
I occupied ( occupy!) myself with reading a lot of blogs and news stories. I’ve listened to music. I’ve watched mucho Netflix. I’ve used my happy memories to escape from the present symptoms I might be experiencing.
I’ve never understood this idea of “being bored.” Do you? What kinds of things do you like to do to keep yourself occupied or if like me, to keep your mind occupied?
I can’t talk about Orlando. I am absolutely at a loss for words. After a couple days of following the news, which presently seems to also embed social media posts such as Twitter feeds, and other very well developed thoughts (*cue sarcasm), along with the comments going around about this tragedy, about the President, about different groups, different religions, well, it is all very exhausting don’t you think? I have seen an outpouring of positivity and support for others and then….well, there’s always the “but” or the “butt___”!
**Please believe me when I say that I am in NO way saying anything about the character of the anonymous person who authored the original FB post to which I responded. I only use this as an example of clearly illogical thinking (again, not as my personal opinion, but when applying the elements of Argument) and not as an attack on anyone’s character. However, the presumed argument made in the Facebook post below about Muslims and their responsibility as a religious group for terrorists seems to be indicative of how much or how little we all are reflecting on not only this tragedy, but also on the state of our political and social values. (Yes, I know there are also other arguments implied in this particular post but I only addressed the one. It was enough to chew on and ruminate about for quite a spell).
Facebook post- June 15, 2016:
Here he [President Obama] goes on his RANT about innocent Muslims… At this point any intelligent person would be wary of allowing unknowns into our country!!!! He’s a winner… cannot wait until he is out of office… If Muslims do not want to be targets of discrimination then they should fight harder to irradiate [eradicate] the evil among them… They DO NOTHING when they see some becoming inducted into terrorism
(The connection between us is that we are FB “friends” is through shared health issues).
When you see a star, * please insert any other religious group, or for that matter any group based on gender, ethnicity, race, socioeconomic level, etc.
“Using your (the FB poster’s) above words, “If Muslims do not want to be targets of discrimination then they should fight harder to irradiate the evil among them… They DO NOTHING when they see some becoming inducted into terrorism”, I would like to address one of the underlying implications of your idea.
“I would counter then, using your own logic as stated above, that we Americans, or here’s a much better analogy (a comparison) that we as Christians (or use any other religious sect), behave the VERY same as your description of innocent Muslims above. I am guessing spell-check took its toll with the iradiate” rather than “eradicate.” We as *Christians (use any religious group if that suits better say, Jewish, Buddists, Mormons, etc.) stand by, and we watch silently as people, mostly from a low socioeconomic environment and mostly young people at that, are being “inducted” into large and established hate groups (one example is the KK), into nefarious gangs, here, right here, all across America.
“I believe hate groups as well as gangs can, and are labeled, especially with our modern rhetoric, as Domestic Terrorists. And yet we as *Christians (insert any religious or really, any other group here in the argument presented!) stand by, allowing our own young people to be recruited, molded and trained, to be taken into the “flock” if you will (pun most definitely intended). We also arguably do not lift a finger to stop this; then we stand by and allow these people, groups, as well as individuals to do EVIL here in our own country.
“Are we to hold all *Christians responsible for actions of others who claim to be *Christian and who do harm? If so, then logically, the conclusion we should come to after reading your post is that (again, based on your position above about Muslims who are not terrorists and who do not want to be discriminated against due to their religious affiliations) in essence then you are also saying the very same thing about *Christians ( or really any defined religious group) who do not root out evil within their own communities are responsible for discrimination against them as *Christians because the group as a whole failed to make sure that all *Christians behave accordingly? In other and in more words, you are stating that is essentially alright to discriminate against a group of people based on religion. So very Interesting. I could go on about how we have religious freedom here, how the group cannot be responsible for the whole, how every group assembled will have all kinds of peoples as memebers, and yada yada, yada, but this post is already way too long as it is.
“Respectfully, there is no logic in the above statement once one tries to use the same premise with other religious groups. I know this is a long response, but I am really hoping that you can perhaps take a minute to see the flaws in your argument, to see the underlying and discriminatory justifications in your argument, as well as perhaps to see all of this in a different light orfrom a different perspective.
“Maybe I should have just shortened my response to your post into the concise, yet very effective and ever-trusted idiom, ‘try and put yourself in someone else’s shoes….'”
That was what I responded sans the sarcastic tone at times, (those are only for your benefit) along with a few minor edits I noticed while jotting it up here. Even after responding, all of it lingered like a bad taste in my mouth (alas, another idiom!). So, I continued to dig deep on this and what all of this means for us as a nation as well as as individuals. Only my own opinion of course.
At some point while thinking way too hard, I remembered one of my favorite stories as a kid was a Dr. Suess tale. I would like to encourage everyone, if you haven’t already, to read Dr. Seuss’ The Sneetches and Other Storieswith a focus specifically on “The Sneetches” story. Nutshell, the plot consists of Sneetches with stars on their bellies and Sneetches without stars on their bellies. Sneetches with stars think themselves superior to those without and will not engage with the Others. A charlatan arrives in town with a machine that puts stars on bellies for a small fee. Then, he creates a machine to take the stars off for again, a nice fee. This continues on and on, until all of the Sneetches are penniless and completely mixed up. At this point, the Sneetches cannot tell one from another and realize that they are all the same. The charlatan makes off like a bandit, but the the Sneetches end up friends.
Relating such a heavy idea, the idea that it is alright to discriminate against certain religions for ANY reason, to a children’s story is not done in a flippant nor sarcastic way. Sincerely, I think the Sneetches tale could provide many of us with all kinds of awesome lessons and experiences we could apply to our present day lives.
You are so right, dear reader, nothing in this post has to do with Lyme disease! Oh, well other than the fact that the supposed original argument could in fact be stated about the “group” of people who suffer from Lyme disease. That we as a group are utterly and totally responsible for every single person’s behavior and if that behavior is abhorrent, the rest of us with Lyme disease “deserve” to be discriminated against.
Enough of me postulating and puffing up my chest. You can probably conclude that I miss preaching, eh, I mean teaching! I hope you and your families are safe, happy, and open-minded. Let’s all get out there and do our best today.
When I feel really horrible, a migraine, nauseated, joint pain, and it is difficult to be here in the “present”, I escape if at all possible into my mind, into my memories. Usually, it is a worthwhile distraction.
When I was a child, my family and I lived in Upstate New York. My parents married young, my mom 19 and my dad was 21 or 22? My father became a high school Physics teacher in a rural New York township and my mom stayed home with us, me, then my two brothers. I think I was a little over a year old when they bought a very old farmhouse. Located on a mountain and accessed by a dirt road, we were isolated as the only family in that area to stay year round. There were other homes up in that area, although one could not see them from our house, but these other places were weekend retreats for New Yorkers who lived in the City. We lived in this house and in this area until I was 12. Most of the memories I like to escape to are from this time period.
Memory #1 Escape – Snow:
Sometimes, when I feel so horrible I like to think about the snow. Yes, of course I romanticize it; I wasn’t the one trying to keep the house heated, or the one trying to get to work. For me, snow was always awesome and amazing. One of the best feelings ever is being outside in the deep, deep cold, the silent, penetrating cold, breathing hot air into the ski mask you have on because breathing in the cold air hurts your lungs. It’s the simultaneousness of breathing in the bitter chill, burning your lungs and nose hairs alike, then breathing out the hot, the hotness of your breath that turns to steam that rises on your cheeks and into your nose.
So snow. After the storm rides through, it becomes an irresistible and impenetrable quiet. All I can hear is the crunching of my moon boots through the crusty topping of the snowdrifts. If I stand for a minute, the silence itself is almost a sound. Some describe it as a blanket, the snow, but more so and for me, snow is a buffer from the outside world. Out in the wintery landscape, one feels enveloped and safe, encapsulated in the moment. Nothing breaks the eloquent silence and you don’t want it to ever end. The closeness. The buffer. The insurmountable quiet.
It’s cold but I am wearing a snowmobile suit. It takes forever to dress this 6 year- old ragamuffin. First, gloves, hat, scarf. Then legs of the suit and slide into the snow boots. Now, arms in, make sure the gloves are tucked into sleeves (this is why we put gloves on first), then zip up. OH. Make sure to go to the bathroom before dressing for outside. We never had ear muffs. Always a ski hat pulled down over the ears and maybe another scarf wrapped around the ears and the nose/mouth.
Heading out into that stillness, that world of endless white, hours of pure fun and exercise awaited us. One time, a blizzard came through at Easter. It blew hard and the drifts were monstrous. When it finally subsided, my brother Brad and I headed out to the side yard along the rock wall. The drifts were utterly amazing. We started digging. The snow was perfect. The outside of the drift was caked together and solid. It held fast as we tunneled into the pillowy insides. We worked for quite a while, scooping and moving snow. Finally, we could both sit inside. We laughed at our good fortune and our lovely handiwork. Our little hangout held fast for several days until it started to warm up a bit and began to melt.
Our faces burn red from the frosty air. When we get inside next to the warm fire that reaches into our muscles and works into our bones in a way like nothing else, our mom will put Bag Balm on our rosy cheeks and our noses so they wouldn’t chafe. We’ll be exceptionally tired out. The kind of tired that feels good though, you know? While we unthaw, we put up our suits, shake off our boots, put everything by the stove so it will dry out. Once warm, we can barely keep our eyes open to eat even though we are starving. We drift off to sleep into one of the very best night’s rest we’ll ever have again.
Originally posted on Facebook on May 30, 2016, re-posted here with express permission.
This post today in a Lyme disease support group brought patients to tears. It is a beautiful tribute to his wife and a beautiful and moving way to finish Lyme Disease Awareness Month. There are many aspects of this that will resonate with patients and loved ones, and parts and pieces that will especially be helpful for those newly diagnosed, or newly entering the world of Lyme because of someone they love that is suffering.
This was to the post by Carol McAlister, introducing the words her husband so beautifully shared to day:
My husband wrote this today. I have to share it wherever I can. Please read if you or someone you love is struggling with Lyme. This man is my heart!❤️💚
Carol and Jason McAlister with their beautiful daughters. Jason’s advice to anyone with…