On strike!

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I consider myself a good patient. I bet if you took a survey of my doctors and asked them if I am a good patient, they would also check that box. A significant credo in my life is that a treatment plan won’t work if you don’t follow it. After surgery I have rested, iced, exercised, strengthened and physical therapied myself back into shape. For RA, I have swallowed pills, exercised, X-rayed, and watched my diet. I have also injected once a month, once every other week, once a week, and once a day as well as suffered through hours-long infusions that did nothing more than left me with a headache and nausea.

But I am also an active participant in my health care and, at the moment, I am

- Attribution: Shopify.com

Attribution: Shopify.com

actively NOT taking my biologic.

It didn’t start out that way. At the end of March, my rheumatologist took me off leflunomide (Arava) because my liver enzymes were elevated. When I saw her in mid-April before the trip, she started me on 10 mg of prednisone to keep me going through our vacation. I was hopeful that she would also switch me off the Kineret, which is a daily injection because (1) I really didn’t think it was working anyway and (2) I really didn’t want to babysit 14 pre-filled syringes all over Europe. But she was reluctant to take me off both leflunomide and my biologic without a different treatment and she didn’t want to start a new medication right before I left the country for two weeks. So off to Europe I went, still on the Kineret.

Things went pretty well until one day in London there was a mishap with the mini-bar fridge where I had stored my Kineret. The remaining syringes spent at least 12 hours being warm which is not what you want to have happen to a biologic that’s supposed to be kept refrigerated. That event coincided with the fact that I was getting sick so I made the decision just to forego any more Kineret until after I got home. Either it wouldn’t work because it had gotten warm or it would work and I would potentially get even sicker because my immune system would be further compromised.

So since that time (a little more than two weeks ago), I’ve taken nothing for my RA except for 10 mg of prednisone a day. I did refill my Kineret prescription when I got home. And I’m pretty much over the crud I had. I just can’t seem to get motivated to restart the Kineret. I don’t think it’s working for me and frankly, I hate the daily injections. The prednisone seems to be enough to keep the inflammation generally down and the flares at bay without being strong enough to interfere with sleep or produce any of the other noticeable side effects.

So here I am, Ms. Poster Child for patient compliance being on strike against taking my biologic. Not exactly an earth-moving revolution, but for me, it’s a pretty significant step.

I don’t know that prednisone is a long-term solution. While I love all the good things it does for me, it has a very dark side. But I’m down to two biologics that I haven’t tried yet, Rituxan and Acterma. Given the choice, I’m not sure I wouldn’t just rather ride the prednisone wave a bit longer.

I see my rheumatologist in about 10 days. My plan is to stay off the Kineret until I see her again. Then we’ll see what comes next and whether I can regain my “good patient” status.

I hope whatever revolt you happen to be leading at the time is a huge success. Thanks for checking in.

Thank you, Healthline!


At some point while I was gallivanting around the European countryside, Healthline paid me the immense compliment of once again naming Carla’s Corner as one of the rheumatoid-arthritis-bestBest Rheumatoid Arthritis blogs of 2015.

I happen to be in excellent company as many of my favorite bloggers are also on the list. I hope you’ve had the opportunity to visit the site and either renew your acquaintance with some great RA advocates or meet some new ones. (See the full list here.)

There and back again – travels with RA

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I’m not even sure where to start. Almost immediately after my return from the HealtheVoices conference, I left for two weeks of vacation in Florence and London. I guess there’s a good reason I feel like I haven’t slept in my own bed for a while.

First home base was Florence. This is the view from the Ponte Vecchio.

First home base was Florence. This is the view from the Ponte Vecchio.

Let me first say that it was an amazing trip. My husband and I had a wonderful time and thoroughly enjoyed ourselves. However, when you have a chronic disease, there are always two parts to the trip. There’s the trip itself, then there’s dealing with the disease while you’re traveling.

The most challenging part of the entire trip was getting from Dallas to Florence. We took a flight from Dallas to Houston where we had a four-hour layover before picking up a British Airways flight to London Heathrow. We then had to clear customs and immigration and make it across London in rush hour traffic using the London subway system (and dragging our baggage) to London City Airport where we took a second BA flight to Florence. By the time we made it to the hotel in Florence, we had been traveling 28 hours. We were completely exhausted and jet lagged (there is a seven-hour time difference between Dallas and Florence).

We had been to Florence before when I was sent on business and my husband joined me for a couple of days at the end of the trip. This time we really got to explore the city and enjoy it at a reasonable (slow) pace. Our hotel was located just outside the city center — a few steps from a tram and bus stop that took us into the city within a matter of minutes.

The Basilica of San Lorenzo is just a few steps from the train station.

The Basilica of San Lorenzo is just a few steps from the train station.

Of course, in addition to all the sites, Tuscany is famous for its wonderful food (of which we took more than ample advantage). Since I was there last, Florence’s Central Market had added a floor of restaurants above its main market floor where you could get incredibly fresh food cooked to order.

Bistecca fiorentina, or T-bone steak, is a Tuscan favorite. At this restaurant in Florence's Central Market, they cut the meat immediately before cooking it for you.

Bistecca fiorentina, or T-bone steak, is a Tuscan favorite. At this restaurant in Florence’s Central Market, they cut the meat immediately before cooking it for you.

Sweet shops abound in Italy.

Sweet shops abound in Italy.

We used Florence as a home base to visit both Venice and Lucca. Venice is, of course, the city of the fabled canals. Lucca is a smaller town close by that has a wall surrounding the city. You can actually go up on the wall and walk around the city or bicycle.

St. Mark's Square in Venice.

St. Mark’s Square in Venice.

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The interesting ladies’ “toilet” at the Lucca train station offered some challenges, particularly with hip and knee replacements.

We had also planned to go to Sienna, but it came to the point where my husband and I were both just completely worn down by the travel, so we swapped the side trip for a day of rest where we did just that — slept in late and took it easy the rest of the day, venturing out only for something to eat.

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I need a walk-in shower because it’s difficult for me to get in and out of tubs. This is the “accessible” shower in our Florence hotel. No shower curtain, so the place was soaked when I got done.

After a week in Florence, it was time to head to London for the second part of our trip. London is one of our favorite cities and we’ve been fortunate enough to visit at least once a year for about 12 years. I’m not sure that RA will let me make many more trips. But it almost felt like coming home.

I dislike crowds and really don't like heights, so of course we took a turn on the London Eye.

I dislike crowds and really don’t like heights, so of course we took a turn on the London Eye.

We tried a different hotel this time, the Marriott AC St. Ermin’s, which was wonderful. Not only is it a great hotel with a superlative staff, it was conveniently located close to both the Underground and major bus routes. We were also only a few blocks from Buckingham Palace.

St. Ermin's has more than 200,000 bees at their "Bee Hotel" and they use the honey throughout the hotel.

St. Ermin’s has more than 200,000 bees at their “Bee Hotel” and they use the honey throughout the hotel.

We visited most of our favorite haunts and restaurants in London and then took our life in our hands. We actually rented a car and drove north to Duxford, the location of the Imperial War Museum’s aircraft museum. Other than the terrifying experience of driving on the “wrong” side of the road, it was a perfectly lovely trip.

I never found out what was growing in these beautiful yellow fields we saw on our drive to Duxford.

I never found out what was growing in these beautiful yellow fields we saw on our drive to Duxford.

We saw the very rare site of an SR-71 "Blackbird" stealth bomber was being towed to a hanger while we were at the IWM at Duxford, north of London.

We saw the very rare sight of an SR-71 “Blackbird” stealth bomber being towed to a hanger while we were at the IWM at Duxford, north of London.

We were fortunate to take in the London Film Museum’s collection of Bond cars. In addition to the cars, they had supporting information such as story boards and early drawings of the cars. For Bond fans like my husband and I, it was great.

Bond in Motion - the most complete collection of Bond cars in the world.

Bond in Motion – the most complete collection of Bond cars in the world.

Kate and William’s new daughter, Charlotte Elizabeth Diana, the Princess of Cambridge waited until we were in town to make her appearance. Even the taxi cabs celebrated the new princess. (See sign on cab below that proclaims “It’s a GIRL!”.)

Even the taxis heralded the arrival of a new royal princess.

Even the taxis heralded the arrival of a new royal princess.

On our final night in London, we took in the theatrical production of “American Buffalo” with John Goodman and Damian Lewis. It was probably one of the best plays we’ve seen.

American Buffalo. Image courtesy of Sheffield Theater.

American Buffalo. Image courtesy of Sheffield Theater.

I often say I can tell how good of a time I had by how beat up I come back from a vacation. I must tell you that I am black and blue in most places plus have a pretty good case of the crud. I couldn’t have done the trip had I not had steroid injections in both my knee and my shoulder and been on 10 mg of prednisone during the entire time. Even then it was a struggle.

I am off one of my RA meds due to elevated liver enzymes (something that I now need to address since I’m home). My biologic, Kineret, is a daily injection that has to be refrigerated, which means that I had to take 28 pre-filled syringes with me to Europe and keep them cold for two weeks. Not an easy feat. I’m not sure the Kineret is really working so the prednisone was the only thing standing between me and a total flare during the trip.

Kineret comes in a box holding a week’s worth of injections (seven syringes), so I packed two boxes in an insulated bag with the ice packs that the specialty pharmacy uses to ship them in. I really didn’t have a problem getting the medication through security at DFW, they just sent it on through. We stayed inside security at the Houston airport, so I didn’t have to do a second screening. Halfway across the Atlantic, I got worried that the ice packs were thawing, so I asked the flight crew to fill some zip-lock baggies I’d brought with ice. That helped, but the bags leaked and soaked everything in my carry-on tote, including some of our travel documents. It was when I got to London City Airport to catch the flight to Florence that I ran into the first issues. They wanted to look at everything, they needed to see the note from my doctor prescribing the drug, they needed to test the ice packs to make sure they were ice packs and not explosives. All this was fine, but it added another 15 minutes getting through security (which already takes a long time since I set off the metal detectors).

Once I got to the hotel in Florence, I was able to store the drug in the minibar and the night before we left, I got the staff to refreeze my ice packs for me to use for the trip to London. Everything went well from Florence to London and then at the hotel until about halfway through the trip. Then there was a mishap with the minibar and my syringes became unrefrigerated. At that point, I had decided I should quit taking it anyway because I was getting sick. (And we all know you’re not supposed to take immuno-suppressive biologics if you have an infection.) The itchy, scratchy throat I’d developed in Florence (and thought was allergy related) turned into a real sore throat with a very active, very productive cough. This eventually spread to my nose and sinuses and down to my chest, finally enveloping my left eye in a bright-red case of conjunctivitis (pink eye) the night before we left London. I was visibly ill and I was actually very concerned that they might not let me on the plane and/or let me back in the country. Since the entire Ebola scare, the immigration folks at DFW are pretty gun shy when it comes to sick passengers.

But it all worked out. We had a direct flight from London Heathrow to DFW which made the trip about as easy as it could be. I have antibiotics now that I’m home that seem to be helping the nose/throat/chest infection and some antibiotic eye drops that are helping the eye. Now comes all the unpacking, laundry and getting caught up with real life.

It was a wonderful trip, but I’m really, really glad to be home again.

Thanks for checking in.

 

Hear Our Voices!

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Sometimes I (erroneously) state that RA has never brought blessings into my life. The fact is the connections I have made because of my illness through the online community and, increasingly, social media, are some of the blessings I cherish most. This was underscored during the past weekend’s HealtheVoices conference sponsored

View of the Manhattan skyline from the conference hotel.

View of the Manhattan skyline from the conference hotel.

by Janssen Biotech which brought together online advocates not only from the RA community but a multitude of other chronic diseases including diabetes, cancer, Hepatitis C, and other debilitating conditions.

There were two things that struck me profoundly over the course of the conference. (Trust me, as you get older, there are fewer and fewer profound moments, so this was pretty amazing.)

The first is the commonality across all the various forms of chronic illness. We don’t necessarily suffer the same symptoms, but we all face similar challenges: communicating with our doctors, fighting for treatments, battling insurance companies, making difficult life decisions affecting family and work, and many, many others about which healthy people have no inkling. While it’s easy to feel isolated when you have RA or other chronic conditions, the reality is there is an amazing range of people who are just like us. Thanks to “e-voices”, the voices in the wilderness making connections via the Internet, we are able to share experiences, offer and receive support, and build a community of out of individuals who would otherwise, indeed, be isolated. Instead of differences, we are finding common ground and common causes.

The second thing that so affected me was the realization of how powerful and important the patient voice has become in healthcare. Again, thanks to the power of the Internet, patients have a platform and a voice and are now being heard like never before. Whether its been through a natural evolution or whether we’ve shoved our way to a place at the table, I don’t think that genie is every going back into the bottle. If anything, the patient voice — through its online and social media advocates — will continue to resound through the halls of government, through the classrooms at teaching hospitals, across the ivory towers of insurance companies, all the way down through the individual examination rooms where we meet with our healthcare providers. The patient voice is not only powerful, it is empowering, providing each of us with the knowledge and confidence to make a difference in not only our personal healthcare, but how healthcare is managed and provided going forward.

It is not just the RA voice, it is the voices of RA combined with Hepatitis C combined with Cancer, combined with Diabetes, combined with HIV, combined with the great mosaic of other acute and chronic conditions. This combination of voices is creating and will continue to create a cacophony that will be heard.

We are, after all, the consumers of healthcare and there is no greater force in a capitalistic society than that of the consumer. We simply have to understand this power and use it effectively.

There are no words to thank Janssen enough for this experience and for their continued mission to meet the needs of patients — not only by providing leading pharmaceuticals that cure or alleviate chronic diseases — but also supporting the less obvious needs by actually listening to the patients who benefit from their research.

Note that in the pursuit of full disclosure, Janssen paid for my travel expenses for the summit. However, all thoughts and opinions expressed here are my own.

Joint Replacement: A Chat With My Surgeon

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While certainly not inevitable, joint replacement is a viable treatment option for many people with RA when the effects of joint damage is no longer being adequately managed by other means. I consider myself a veteran having had three (hip, shoulder, and knee – in that order). Pain and decreased range of motion or mobility that interfered with my ability to take care of every day tasks were the driving factors in my decisions to have joint replacement. I suspect the same is true with other patients. But what, I wondered, is the surgeon’s perspective on the subject?

Dr. William F. Tucker, Jr., MD, is a noted orthopaedic surgeon. His areas of special interest and expertise are hip and knee replacement and revision surgery and arthroscopic surgery of the knee and shoulder. He was the first orthopaedic surgeon in Dallas to perform minimally invasive total knee replacement and performs minimally invasive hip replacement where appropriate as well. He instructs practicing Orthopaedic Surgeons in the performance of minimally invasive joint replacement and is a Clinical Professor of Orthopaedic Surgery at the University of Texas Southwestern Medical School. I have been privileged that he and his wonderful staff have been taking excellent care of me for a number of years. We’ve been through a lot together. Not only did he perform both my hip and knee surgeries, he’s done multiple soft-tissue surgeries and more joint injections than I care to remember. He referred me to the highly talented and qualified surgeons who performed my shoulder replacement and back surgeries and, importantly, he’s the physician who referred me to a rheumatologist that led to my diagnosis and treatment for RA. (You can learn more about him on his website, www.williamtuckermd.com.)

The following is a recent conversation Dr. Tucker and I had about joint replacement. Note that this should not be considered medical advice. You should always discuss any medical issues and treatment with your personal health care team.

Read the rest of the article at: http://rheumatoidarthritis.net/living/joint-replacement-a-chat-with-surgeon/

In the know …


Don’t you just love it when you get a sneak peek at something great? Or perhaps learn a wonderful secret before anyone else? I’m feeling that way now after spending some time with Joe Coe and Dr. Ben Nowell of Creaky Joints.

It’s no secret that I’m a fan of Creaky Joints and all the advocacy they do for people with rheumatoid diseases and I feel privileged to be associated with their Joint Decisions team. But I am really, really excited about Arthritis Power, their new arthritis research initiative. Okay, let’s face it. I’m in favor of research into RA because the more knowledge there is, the better chance we have of finding a cure. But not all research projects are created equal. I love this one not only because Creaky Joints is involved, but because the patients who participate in the research get so much back! And yes, the Creaky Joints team has partnered with the outstanding folks at the University of Alabama in Birmingham, so there are some top-notch people behind the initiative as well. But did I mention how great it is for the participants? (Oh, right, I did, but it bears mentioning again.)

Arthritis Power

Arthritis Power

The research is done either through your computer (at the moment) or mainly (coming in May!) an app on your SmartPhone. It tracks five key areas: Pain interference, physical function, sleep disturbance, fatigue and the RAPID3 general health assessment. But not only do they gather this information for their research, you get reports back that let you track this data over time, either for your own use or for sharing with your care team. In addition, you can enter your current drugs/treatments and those are tied in. I love it. It’s not research that sits on a shelf somewhere, it collects information that you can actually use.

One of the things that I love about it is how accessible it is for everyone. Even though the survey is highly scientific, it’s written in very clear language and is easy to enter and navigate (a few clicks of the mouse on the computer).

Obviously, the more participants there are, the better the research, so I’m giving you a heads up that YOU NEED TO SIGN UP FOR THIS. (Sorry, was I yelling? Let me just say that again: YOU NEED TO SIGN UP FOR THIS.)

The one catch? It’s not quite ready for prime time yet. I was given a sneak peek in to the “early access” site that still has some “quirks” and the real launch will happen in May when the smart phone is launched. But if you want to go look now, the link is https://www.creakyjoints.org/arthritis-power/#share.

Be aware that you will be asked to read/sign some consent forms because this isn’t just an ordinary website, this really is serious research so Creaky Joints needs to be sure things are legal. If you’re already a Creaky Joints member, it’s a bit quicker because you can just link to your existing profile. And if you’re not already a Creaky Joints member, you should take a look around the site and see what you’re missing.

At any rate, I hope you’re excited about this research initiative as I am. (And if you’re not, you should be!)

Thanks for checking in.

 

Be careful for what you wish

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We all know that drugs have side effects and there’s a risk-benefit balance between whether the cure is worse than the illness. I’ve been pretty lucky that I haven’t really had any bothersome issues with side effects from my RA drugs other than the occasional injection-site reaction when I’ve started a new drug.

That is, of course, except that leflunomide (Arava) has turned my fine, straight-as-a-stick hair to a kinky, curly mess.

Red Foo

Red Foo

I’ve been on leflunomide for about four years now, starting with 10 mg. a day and increasing to 20 mg. a day about a year and a half ago. The curly hair started innocently enough with a few waves in the back. The waves got progressively curlier and crept from the nape of my neck upward to the crown and around the sides of my head. The top of my head is still just wavy, but I can see the writing on the wall: that someday soon, if I stay on leflunomide, I’m going to look like a beardless Red Foo.

Even though women spend hundreds of thousands of dollars every year getting their hair permed or trying to add body to their hair, I’m not one of them. I like(d) my straight hair. So ever since my hair started going curly, I’ve been begging my rheumatologist to take me off leflunomide. She has been reluctant to do so because we’ve been going through a number of biologics trying to find an effective answer. While we were working on finding the right biologic, she wanted to ensure that we had a DMARD that we know has helped.

That changed today in a rather dramatic fashion.

Similar to having a policeman show up at your door, getting a call from your doctor usually isn’t a good thing, especially when you weren’t expecting it. A call from the nurse, okay. A call from the lab, maybe. An unexpected call from your doctor — probably not.

I had my regular labs done yesterday and my rheumatologist called me today to tell me that my liver tests are way out of whack.

Normal AST levels are between 10-40. In December, mine were a nice, low 24. Today they’re nearly three times as high at 67.

Normal ALT levels are between 7-56. In December, mine were a normal 44. They’ve also increased more than three times to 143 — more than double the normal levels.

So after a discussion of what might have caused such a sudden increase, we came to no conclusions, but my doctor did take me off leflunomide (which impacts the liver) for now.

I learned a long time ago that everything has a price of some kind. Given that it took potential liver damage to get me off leflunomide, I’m not sure I would have made that trade. I reached out to my PCP who has also had me hold off on taking my statin until we have a chance to discuss further.

Geeze. Now if my hair would only go straight at the same rate my liver enzymes went out of whack.

I hope that whatever results you get in your life today make you happy. Thanks for checking in.

 

 

Being flexible (redefined …)


I’ve always been flexible. As a youngster I could put my ankles behind my head. Even as an adult I was able to stand and put my palms flat on the floor (in three-inch heels) and stretch to put my forehead to my knees.

All that pretty much came to a screeching halt after my hip replacement surgery a couple of months after my RA diagnosis. Bending more than 90 degrees at the hip can dangerously stress an artificial joint.

Since then, my RA has progressed and my joints have stiffened. Just getting a full range of motion on some days is a major accomplishment.

Read the rest of the post here: http://rheumatoidarthritis.net/living/being-flexible/

 

Two recent things of interest

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Seems like I’ve been neglecting my blog lately (more about that in a later post), but I wanted to bring your attention to a couple of interesting things. If you follow the same blogs I do, you may have already learned about these, but I think that just underscores their interest quotient.

Show Us Your Tats!

I don’t have tattoos so I can’t join, but Healthline.com has a wonderful collection of RA-inspired tattoos (who would have thought?) and the inspirational stories behind them. The collection can be seen at the Healthline site:  http://www.healthline.com/health-slideshow/rheumatoid-arthritis-tattoos#2

Healthline is currently accepting new submissions. If you have an RA-related tattoo that you’d like to share (and you know who you are …), send in a clear photo of the tattoo + short description, with the subject “My RA tattoo,” to Nicole Lascurain at nlascurain@healthline.com There are some other guidelines at the beginning at the tattoo slideshow (size of picture, word count, etc.), so please visit there first.

Help Document the RA Patient Experience

I have been having both live and email conversations with Keith Olsen at Zitter Health Insights which gathers both patient and physician experiences connected with various conditions including rheumatoid arthritis through http://www.yourcaremoments.com. They send out various surveys (all of which pay a few $$ each to a PayPal account) that become part of overall research. In the light of full disclosure, the research is then sold but I think that the more information available about RA the better. You can learn more about the experience via Wren’s excellent post at https://rheumablog.wordpress.com/2015/03/09/your-care-moments-surveys-money-for-free/. If you want to sign up, the registration link is www.yourcaremoments.com.

So, enjoy, if you wish to participate. Even though I don’t have tattoos, I loved the slide show and the various stories people shared. I’ve chosen not to participate in the Your Care Moments surveys, but that’s a purely personal decision (I can’t take advantage of every opportunity I’m offered) and has nothing to do with the validity of their program.

Thanks for checking in.

RIP, Michael Graves

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Michael Graves is considered an icon of American architecture, lending a brilliantly colored voice to the mosaic of what we consider design. Many know him as the designer of the Portland civic center, which is considered the first postmodern building in the U.S. His greatness in design combined with a trademark whimsy reaches from Disney resorts to the scaffolding for the renovation of the Washington monument.

He felt that good design should be accessible by anyone and extended design aesthetics to everyday objects. His singing stainless teakettle has a built-in comfort

Michael Graves Teakettle

Michael Graves Teakettle

handle that is also heat-resistant (good design) and when the water boils, a bird on the spout sings (whimsy).

What many people don’t know is that Graves became paralyzed from the waist down in 2003 and was confined to a wheelchair for the rest of his life. Graves wasn’t feeling well when he returned from a European business trip and found himself fighting a mysterious infection that led to his permanent disability.

Graves and bathtub handle design

Graves and a bathtub handle design for seniors and those with disabilities.

Rather than defining him, Graves claimed the change in his life made him a stronger designer. He had a first-hand perspective of what accessible design really meant. From addressing Congress to bringing the force of his design aesthetic to everything from building to daily tools, he integrated even more accessibility into both structures and products. He was quoted as saying that good design promotes healing and bad design can inhibit it.

I believe that his focus on accessibility and designing for universal access brought a new level of awareness of those needs to the architectural and design community, not only in the U.S., but globally. And while often a controversial figure in the industry, his designs are nonetheless studied by architectural and design students around the world, training a new generation in thinking about the broader needs of the whole population.

Thank you, Mr. Graves. May you rest in peace and your legacy live on so that future generations are better served.

Buildings at St. Colletta

Buildings at St. Colletta, a school for those with disabilities.

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