Help Jackson Cote of Merrimack, NH – critically injured in bike accident

jackson picture of cast signingI am writing this to tell you about a boy and his family that need your help. Originally, we (this includes the Cote Family who started the gofundmepage, Tammy Peavey, and I) created an event page which proved successful in a manner of days, but was “private” and so many could not see it or join it. We have remedied that by starting a regular Facebook page that is open to the public as we want to reach more people willing to help. An event to visit him on the 30th has been coordinated at Crotched Mountain Rehab, 1 Verney Road
Greenfield, NH 03047, between 10 a.m. and 12 p.m.

The link to the page is here: https://www.facebook.com/helpjacksoncote/

At a minimum we only ask that you “like” the page (The “Like” button is close to the top right of the page next to the “Send Email”) to show your support. However, there are other ways you may help as well, such as sending virtual or real messages of support (I will include more about these options below). Before I delve into how you may help, if you choose, please allow me tell you what happened to Jackson so you may understand the gravity and severity of his situation.

On June 28th, 13 year old Jackson was riding his bike home from the library when he was struck by an SUV. This was not a minor event. Though he wore a helmet, the force of the impact caused him to bounce off the vehicle and slam onto the concrete. His helmet was shredded. However, that was just the beginning of his ordeal. When you finish reading this (and I ask that you please do), you will be amazed he is even still alive. We are looking for any support we can get to help with medical bills and his morale.

Immediately after the accident, Jackson was med flighted to Mass General Hospital in Boston where he remained in critical condition and was kept in the Pediatric ICU for one week. He then was transferred to the pediatric unit for another few days. He is now in a rehab facility, but he has a long and tough road ahead of him.

During medflight, emergency personnel worked diligently to manage Jackson as his blood pressure was dropping to dangerously low levels. Some of the injuries Jackson endured include, but are not limited to: Fractures in both of his arms, his elbow detaching from his arm completely, two broken knees, a femur that snapped in half, contusions to his lungs, heart, spleen, and liver, a broken nose, broken teeth, nerve damage, and more. When his bike broke it caused a laceration on in his groin that was so deep it barely missed his femoral artery.

We need your help and there are many options that I will outline below. We would be grateful for any support at all because the family did not want to burden others with their emotional and financial burdens as a result of this accident, but they need our help. Jackson needed oxygen for a week, multiple blood transfusions, and thus far has undergone two major surgeries that each took four hours to complete. The gist of this is the medical expenses are significant, but so is the emotional toll this is taking on his family.

Jackson recently was transferred to a rehabilitation facility and must use a wheel chair to get around; However, with long term, painful, and consistent PT and OT he is likely to someday walk again. Throughout this ongoing ordeal, the family has incurred significant costs to ensure Jackson receives proper care. His road to recovery will be a long and difficult one, but every single person reading this now has the power to show support, such as:

1. Click “like” near the top of the community Facebook page, share the page with others, and/or leave a positive note on the page. You may also reach out using the contact button at the top and next to the “like” button.

2. Donating money (no matter how much or how little) to his gofundme account here: https://www.gofundme.com/2daf8rg

3. Spread the word about Jackson and his plight in any way you can.

4. Send a card, postcard, or letter to him at this address:


Crotched Mountain Rehab
1 Verney Road
Greenfield, NH 03047
ATTN: Jackson Cote

Jackson needs to know we care. I cannot express how grateful his family and Jackson would be for any support you can provide – no matter how big or small.

pic on event page

THANK YOU to all that have provided assistance and to any that will going forward.

We have  private Facebook event going, but because it is private we found it limiting in terms of sharing with others.

jacksonevent

Here are some pictures and messages left on the private event page for those that cannot view them.

pics on event page

Below is the activity and comments from the private page. We are shifting to the community page because event is limiting in terms of who can access it and how long we may run it.

 

Messages left on private event page for Jackson and his family!

Angela Figueroa Whiton

Stay strong Jackson! Wishing you a speedy recovery:)

Chanin Magill Peyton

I was so sorry to hear about your accident. Best wishes from Mrs. P (and Scott and Andrew) for a rapid recovery!
Amy Brodeur Niezrecki

Best wishes for continued amazing recovery and strength. Amy and Anna Niezrecki

Tammy Peavey

We’ll be visiting you again soon Jackson! Keep getting stronger!

 

Melissa Higgins

Jackson, thinking about you every day and hoping you are on your way to healing as quickly as possible even though I know it may seem sometimes like a long and unending journey. There are better times to come. I’ve lived long enough to know that even when it seems life will never get better, it always does.

 

Tammy Peavey

Great words Melissa!!

 

 

Betsy Schartner Schalk

Sending Jackson prayers for his recovery. My daughter goes to school with Jackson and sends her thoughts and prayers as well. You got this, stay strong!

 

 

Melissa Cote

https://www.facebook.com/events/1133360796739617/?ti=icl

JUL 30

Interested

Come visit Jack!

Sat 10 AM · Crotched Mountain Rehabilitation Center · Greenfield

Betsy Schartner Schalk

I will see if we can go.

Sean Powers

Can you all share Melissa’s link to get kids going?

 

Tammy Peavey

If anyone was having issues with the gofundme site not working earlier, it should be all set now! Thanks so much for letting me know! Thank you all for the generous well wishes, cards, and donations for Jackson. It has been amazing!

 

 

Karen Kieltyka Brown

Hi Jackson. We don’t know each other, but we have something in common, I was also struck by a car. I know the challenges you face and all the work it’s going to take to restore your health. YOU CAN DO THIS!!! On the hard, bad days, just get through them! You can start fresh again the next day. It will get easier, I promise.

 

 

Tammy Peavey

Karen! I didn’t know. Thanks for the supporting words for Jackson!

 

 

Pam Crocker

Best wishes for a speedy recovery. 🙏

 

 

Troy Church

Hey Jackson i know we arent friends and we dont particularly like eachother at all, but nobody deserves this and hope for a speedy recovery dude!

 

Tammy Peavey

You’re a great kid Troy. Good for you for sending such a positive message.

Marie Cote

Your kind words touched all of our hearts. Thank you Troy.

Kelly Ann

Hey Jackson I know we don’t talk very often but you are one of the nicest and Happiest kids I know and I hope you recover quickly!🙏🏻

Olivia Gage

Jackson, I know we were never extremely close but it is horrible to see a friend go though this. We’ve known eachother since about 5th grade and you have been one of the crazy chorus kids like me! You’ve always stood out in a crowd. You help people where you can and try to make things better. All of your hard work has shown through, and now all of the people you’ve helped and made an impact on are coming back to help you. You’re in our(me and my family’s) thoughts and prayers, hoping you’ll get better. I hope you’re able to safely come back to MHS for the beginning of school! I’m pretty sure most of the 9th grade will want to help you out as needed! I hope you are doing well and PT/OT does hurt too much. Best of luck to you! And I hope this photo of your musical friends makes you smile!
~Liv

 

Marie Cote

Thank you Olivia. Jackson always speaks highly of you and was so happy to hear you had reached out to him!

 

Olivia Gage

I’m happy to know I was able to help him out and bring his spirits up a bit! Marie Cote

 

Julie Smith Gage

You can overcome this. Keep working and I know that you will be back home with your family and friends soon! Best wishes and prayers to Jackson and his family.

 

 

Andy Straussberg

Best wishes for a speedy recovery. You are in our thoughts.

 

 

Melissa Higgins

Quick update: Donations are up to $2,900 as of this writing! Thank you to everyone assisting by attending the event to show support, sending cards, leaving positive notes, and donating. Please feel free to share the event link with your friends as well using the invite button on the right hand side of the page under the picture. Here’s the link to the gofundme account:

Click here to support Jackson Cote by Ryan Cote

Becky Pollock·

Sending healing thoughts and well wishes from California.

Amy Keiser Bellizia

Jackson, I am praying for you and your family. I hope you know how very brave and strong you are. As someone who spent most of her childhood in hospitals, I know it sucks, but you keep fighting. You’re an inspiration!!!

 

Melissa Higgins

Thank you Amy for such a kind message!

Alan Robinson

God bless you and everyone else who is involved with this great love amazing amen

Diane McDougall

I Pray you are well now Jackson in Jesus name x

Robert Gilbert

We will pray for you.

Debbie Asher Hickman

Best wishes Jackson, feel better soon, your in my thoughts

Al Thomas Jr.

You are in my prayers !!!!!!

 

 

Jennifer Lee

Keep your head up! Best wishes for a fast full recovery 💕

Brandi Wreyn

Hang in there! Here’s to a speedy recovery 🙂

 

 

Jenna Fino

Anthony and I are sending many thoughts and prayers to Jack and the Cote family! We love you guys and hope Jack will have a speedy recovery! Please let us know if there is anything else you guys need. We are always willing to help!

 

 

Chelsea Patierno

Sending happy thoughts and positive vibes for the long recovery! I will have the boys mail a postcard! What a nice idea 🙂

 

 

That awkward question

Realtors are advised to ask buyers if they are currently working with an agent before pursuing them as a client. This can help to avoid the kind of conflict that comes with learning that the buyer a realtor thought was working with them exclusively is really playing the field and going on showings with other agents – probably without having any negative or deceitful intent (some might, but I choose to believe that is not typically the case), but because they are learning the process as they go and rely on an agent to guide and educate them.

If a buyer discloses this information outright, upon being asked, then I would think most agents would be respectful of their candor, and thankful for it as well. If a realtor asks a buyer if they are working with another agent and the buyer says “yes” then the realtor (should) know to back off and politely advise the buyer to work through the agent they have chosen, unless they decide it is not working out and both parties agree to part ways. However, if the buyer says “no” when in truth they are working with one or more other agents it can cause interpersonal, ethical, and perhaps even legal problems down the line.

That said, the responsibility to ask the question falls on the agent in terms of broaching the topic. Asking the question, and receiving an answer, provides the agent with the information needed to determine how to handle the situation, because many buyers simply do not know how the process works, or what problems some actions could cause down the line, and so they may not proactively offer the information as they do not know it is important. Most buyers are likely not trying to hide it at all; they just do not know it is critical for the agent to have that knowledge.

While asking the question during the first interaction may feel awkward or uncomfortable, it is essential, and gives the agent an opportunity to offer the buyer an explanation as to why they asked the question to help them better understand the complicated mechanics of home sales. This may also open the door to further discussions about the buying process and the buyer’s needs if it turns out the buyer is not working with another agent.

On the realtor side of the equation, it helps agents preserve relationships with other agents in the industry by respecting existing agency relationships other agents may have with one or more buyers. This is important because many agents encounter ones they have worked with before on numerous occasions – especially in smaller markets like Litchfield or Merrimack, New Hampshire – where specific agents do a lot of business in those towns. Negotiating with an agent that feels another agent has been unethical or has behaved in an unpleasant, or dishonest, manner in the past becomes exceptionally difficult and can impede a sale, or make one much harder than it has to be due to hostility or distrust among the agents. This is always best to avoid so that negotiations are focused on the best interests of the clients and not the agents.

not exclusive

And then…

not exclusive part 2

 

Real estate agent in some top ten most stressful job lists

I want to write about a misconception people who are not in the real estate business often have about the nature of the role of realtor or real estate agent. I can count on both hands a minimum of two dozen times when a person has expressed to me how lucky I am to have a job that is so easy and flexible. These assumptions used to baffle me, but after pondering this notion for some time I now realize why this career path appears this way to those working in other professions.

Before I present some realities about working as a real estate agent, I want to say that despite the information I am about to share I feel this career is right for me because it satisfies my need to help others in a meaningful way. For instance, I help buyers find the home they want – within the confines of their budget and at the best value possible. I find working with buyers enjoyable because I know that if I do my job right, barring any problems or issues I cannot detect and an inspector does not detect that do cause the deal to fall through for reasons beyond the agent’s control, then I get this sense of satisfaction that I have helped them reach a major milestone in their life – whether they are first time home buyers, second time home buyers, or have purchased many homes. I also love working with Veterans and have done so many times. It is a somewhat different process and so I know that with the experience I have, I can help active and inactive military personnel navigate the process much better than agents that do not.

I enjoy sellers because I treat the relationship like a partnership and so when obstacles arise we work together to resolve them, and I do everything on my end (that is legally and ethically within my power) to do to help them. But perhaps most importantly, I listen to their concerns, ideas, and input instead of forcing a decision upon them.

Reaching the closing table and finalizing a purchase and/or sale marks the end of an often emotional, stressful, exciting, and sometimes unpredictable time span that may last a month or much longer, depending on the circumstances and myriad factors. This is true for the buyers, sellers, and the agents. There is a great deal of stress and uncertainty involved and this can bring out the worst in any person at times. Understanding this can become the key to making it all the way to the end.

That said, I had a friend say to me one day “Hey, I came across this article that said being a real estate agent is one of the most stressful jobs a person can have? Is that true?” I thought about it for a moment, and the ups and downs I have been through in my career – particularly the first year which was especially difficult – and I responded something to the effect that while it can at times become tremendously stressful, it can be at times exceptionally satisfying and rewarding.

I am speaking only for myself, of course, but based on what other agents have told me I know that many in the business remain in it despite the stress, but I believe there are categories of reasons as to why agents remain in the business (especially successful ones), such as: the incredible feeling service-oriented agents get when they get the the closing table, the money (not everyone is in it for the money, because you must spend a lot of money to remain licensed and busy with clients, but for some agents it is all about the bottom line), or the rush they get from winning listings, negotiating contracts successfully, getting paid, and potentially becoming known among one or more communities as a prominent agent.

Getting back to the belief some have that the job is among the top ten stressful jobs (and not all web sources share this opinion), I thought to myself that while I do know the job can at times be very stressful, it is not really fair to compare it to jobs like law enforcement, corrections, those working for fire departments, and many others where people actually put their lives on the line for others or shape the lives of other people, such as teachers and professors – to name a few. Not even close. Those jobs are beyond stressful and they are also absolutely critical, and so I  had to spend some time thinking about how and why the career of real estate agent has made the top ten list on so many different sites. After much thought, I did come up with some answers and realizations about the job that do support a high ranking. Perhaps not in the top ten, but top twenty for sure.

Many people that do not work in real estate, or have not been involved in a transaction for a period of time, do not know how much is involved in the process. Putting a home on the market and selling it is the obvious goal in the mind of sellers. Finding, negotiating, and purchasing the right home for one or more people’s specific needs is the primary goal of the buyer/s. However, there are other sub-processes and happenings that may bring about much anxiety and stress on the part of all parties (of which there are many, including: the buyer/s, the seller/s, the agent or agents, the title or attorney company, a lender if needed, an appraiser if applicable, and an inspector – to name the most commonly included parties, as well as the inclusion of the friends and family members of buyers or sellers that like to view the property and give input). All of the moving parts that are either visible to all parties, and invisible to some, must all come together in just the right way for a closing on a home to occur. Unfortunately, with that many people involved there are plenty of opportunities for challenges and difficulties to arise, but this does not mean the purchase or sale will not make it to closing. Quite the opposite if one is working with a good agent and communication is clear and frequent. Even when agents are 110% on top of their game there are some factors they cannot see or control, or can see but have little to no ability to resolve.

Regardless, in difficult situations I push forward anyway and no matter how bleak a situation seems with regard to a problem with a purchase or sale I think hard about any and all possible solutions. I am an out of the box thinker – a person that does not really believe it when other say something is impossible or a lost cause. I am a persistent person, with an instinct for advocating strongly on behalf of those I am working with. The majority of the time these efforts pay off and the purchase or sale is completed. Once in a while, though not often, a problem or obstacle arises I cannot remedy due to reasons beyond my control (underwriters not approving financing near the end, etc.).

When I sit at a closing table after one of the kinds of sales that have proven very difficult, and realize that despite everything that has happened and I have managed to work with all the parties to keep it all together, allowing  my clients to make it all the way to the end, it serves as a reminder that the stress was (and remains) worth it. This belief is further etched into my brain when a buyer or seller expresses their gratitude or finds themselves compelled to write a nice review about me online, say thank you, or even give my name to others as a referral.

The above are signs to me that I am in the right career. They tell me I am doing my job right, or at minimum to the absolute best of my ability. I have even had agents  on the other side of a difficult deal give or send me thank you cards because they know how hard the fight can be on either side and while they are technically on the opposing side of the sale, the reality is we all have the same goal and that is to get to closing with those involved and leave them feeling as good about it as possible, despite trauma that may have occurred from obstacles, delays, or challenges, experienced during the process.

But is this job extremely stressful? Yes. To back up the claim, I will provide just a few of the sites I came across after I dispel a few (but not all) myths about work in real estate. These are ones I have personally encountered and stand out in my mind as I am writing this.

Myth 1: Real estate is all about “business”and it is not “personal”.

False. Buying or selling a house is stressful, but necessary because people need and want a place to live. People may say it is “business, not personal”, but nothing could be further from the truth. When a person or couple go through the process of buying a home they are looking for a safe haven that matches their needs to the degree possible given location, financial status, and other factors. Sometimes it is a single buyer looking for a place of their own to own and build equity. Other times it is a couple or a family looking for a place to call “home”. The bottom line is the purchase or sale of a home is directed correlated with person or families needs, goals, and dreams.

The process is personal for sellers too. These are people that have likely lived in and made memories in the home they are selling: both good and bad. Some have had and raised their children in the home they are selling, while others bought it with that plan in mind. This is one of many reasons why sellers may be inclined to sometimes price their home too high. They are factoring in sentimental value – that while does not justify a price point that is exceptionally above its market value – it must be understood and respectfully acknowledged by agents and buyers, or else the sellers are very unlikely to change their stance on the value if an offer is made in a manner that offends the seller/s. Some of these homes do not sell, but when parties remain respectful it is more likely that a seller will come down in price, within reason.

Myth 2: All purchases and sales should be smooth and without obstacles if an agent is competent and professional.

False. This is only true if the agent demonstrates signs of incompetence, and/or the obstacles are stemming from sources they may have some degree of control over. It is also false if such an agent is not taking the needs of their client/s seriously, and really listening to what it is they need. Not being responsive, without explanation, is another sign the agent is contributing to the sale falling apart, or persistent problems throughout because it may mean they are not paying attention to deadlines, acting proactively, or working hard to find solutions to issues that arise. However, if the opposite is true and there are many obstacles, but it is evident the agent is working diligently on a buyer or seller’s behalf, then one must understand it is a complex process. Anything can and does happen.

Myth: The job is flexible.

False. This is a common misconception I hear all the time. Agents that treat their work like a business and a career, versus a hobby, are always “on” and ready to work. These agents spend years trying to find a  work/life balance and still work hard enough to earn a reasonable amount of money.

As discussed in another blog post, commissions are structured in such a way that the check given to the agent as closing does not reflect their net income due to reasons such as: broker commission splits (depending on how the company handles that), possible franchise fees, self employment tax, no retirement plan through the broker, no health insurance unless the realtor buys it on their own or has a spouse with one through their own job, referral fees to other brokers or agents that gave the agent the client, costs spent to market properties or assist buyers with showings, and the list goes on. If a buyer calls an agent at 7pm at night and the agent chooses to answer the phone, the buyer might say “There is a house that just came and I want to see it tomorrow morning if possible because I don’t want to risk losing it to another buyer”. Agents each have their own way of handling these situations, but needless to say there are consequences and implications associated with whatever way the agent chooses to respond, or not respond. There is not always a right or wrong response either. Sometimes it has to be considered on a case-by-case basis.

Myth: Few, if any at all, purchases or sales are without some bumps in the road.

The business of selling homes is unpredictable and there are specific milestones that may be especially hard to get beyond. Communication between agents and clients is essential from the beginning. Agents must prepare their clients in a realistic fashion – not in an effort to scare them off, but in an effort to reduce the stress the client feels if they do encounter a bump or ten in the road.

If an agent is going into a listing appointment promising to sell quickly, promising to sell at a higher than market value price, and promising a painless transaction then they may win the listing, but the odds the process will play out that way are extremely low and they know this if they are experienced. Instead, I personally prepare buyers and sellers ahead of time about what they may expect. I do not do it in a way that frightens them, but rather establishes appropriate expectations right from the start. This is helpful because if a problem does arise, the buyer or seller may still experience stress, but they are not caught completely off guard. I also encourage my clients to ask questions, give input, or express concerns as they come up so they do not fester as many are easily addressed. I cannot emphasize this enough: communication is key.

Myth: I have had people say to me on occasion, “You are so lucky to have such an easy job! All you have to do is show houses or put them on websites and they just sell”.

Let me respond clearly on this one.

No.

The showings are relatively easy, though an agent needs to carefully manage time, coordinate multiple showings (and if you have four or five in a row this can be a challenge and a half to make all the appointments on time), be on the look out for problems or red flags at a home showing, research the property and its history ahead of time, and other work that would double the word count of this article f I listed it all. However, showings are enjoyable to me and I love seeing homes so I agree with the idea that this is one of the easier parts of the job. It is the negotiations, getting a house under agreement, getting past inspection, getting past appraisal, getting lenders that are reliable and return calls (some are reliable and some are not; just like real estate agents and other human beings in general), getting the loan commitment letter on time, meeting all deadlines on time, talking people off the ledge when something happens and they panic, and getting the final numbers for the buyers and sellers within the legally required time frame (or it causes a delay in the closing) that can be the hardest parts of the job.

Please know that there are other common and varied causes of stress to agents including: entering homes or coming into contact constantly with strangers that could potentially harm, rob, or murder an agent, the experience of frequent rejection that happens a lot during an agent’s earlier years in the business (it is the nature of the business since it is exceptionally competitive profession and agents have to learn to let the rejection go and move on), not knowing when the next pay check is coming in since a home has to close for an agent to get paid, regardless of the fact the agent still has bills to pay (and dues, insurance, taxes, fees, gasoline, and marketing expenses), and helping clients through the emotional roller coaster of making such a major change and transition in their life.

There are more, but for now I will leave you with links to websites that include the role of real estate agent/realtor as among the top ten most stressful jobs. Some give additional insight into the realities of this job and why it can cause such stress.

Realtor Magazine’s “Top 10 Most Stressful Jobs”

Forbes’ 2011 list of “What are the Most Stressful Occupations”

Realty Times reasons “Why Real Estate Agent is on the top ten list of most stressful jobs”

HSH’s article “Real estate agent: The job can be a killer”

Active Rain’s “10 Most Stressful Job” and it has a slideshow for those just looking to get the gist of the list.

Value is subjective

Realtors and sellers don’t always agree on what adds or detracts from a home’s market value. Reaching an understanding can prove challenging at times.

graves

It’s not Lupus…until it is

The majority of what I have blogged about so far has related to real estate, but I wanted to talk about a completely different topic today: Lupus. I was motivated to do so because of Selena Gomez’s admission she has Lupus. Her disclosure caused some confusion for some – in part because people have little knowledge of Lupus, but also because she explained she had to receive chemotherapy to combat the disease. Chemo is only one of many treatment approaches that may be used to address the symptoms of Lupus, but chemotherapy, for most, is usually associated with Cancer and not Lupus.

Selena’s revelation prompted some important questions for those with little to no knowledge of the disease. Such as: Wait, you mean Lupus is an actual disease? It can be severe enough to cause extreme bodily trauma or death?

The answers to both questions are yes.

Decades have passed since Lupus was considered to amount to a death sentence or at the very least a significantly shortened life span. Much more is known now and medications have come out that help many people live with this disease that otherwise might have died decades back. But make no mistake about it: this disease can and does still kill and so there is a need for it to remain a critical priority among the medical community. There is a need for further study on the matter, investigation of origins, development of more treatments, and finding ways to provide options for those with the disease to experience a better quality of life. Most importantly, however, is the need to make it more of a priority simply to save more lives or lengthen them. However, bringing major problems that demand solutions to the forefront in today’s society only seems to happen through advocacy, knowledge, and increased awareness of the problem. All of this takes work, but even the sharing of knowledge with a great many people could make a huge difference.

Compared to Selena, I am the complete opposite of a celebrity. Any contributions I make through writing, donations, and volunteering are minimal at best. But small actions, repeated many times, by increasing numbers of people, can result in massive and unthinkable change.

Why else is talking about Lupus important to me?

When I read that Selena Gomez had Lupus I was astounded. Not just because she had an illness that I know is miserable and at times quite painful, but because it takes courage for a celebrity (and there are others that have admitted it as well, such as Nick Cannon, Toni Braxton, Seal, Charles Kuralt, Tim Raines, Flannery O’Connor, Michael Jackson, Mercedes Scelba-Shorte, and too many more to even try to name – some of whom have died as a result of their Lupus) to admit to having an incurable disease. Imagine how many others have this disease and suffer in silence, made to feel almost as though having this disease is a stigma versus an unfortunate reality that they won the Lupus Lottery instead of the Mega Millions. Believe me, if people had a choice between the two I think the Lupus Lottery would go bust. Who knows though. We do live in strange times.

Part of the secrecy, I believe, stems from the very real possibility that revealing the problem will destroy one’s career due to negative and often erroneous perceptions that the person with the disease might be too much of a risk to hire. Too sick. Too unreliable. Not sick now, but could get sick and stop showing up to work. The list of negative assumptions made about people with Lupus is likely a long one among those without accurate knowledge.

Yes, people can and do die from this disease, though with diagnosis and proper treatment a person may also go on to live a long (or at least longer) life. Just look at the accomplishments of those that have admitted to having it for proof the above described perceptions can be wrong.

This brings me back to Selena. She knew admitting she had it could harm her career, but she was also faced with the added pressure of having to contend with assumptions that something else was going on – like she was in rehab for drugs or what-have-you. She was put in an impossible situation, but she made the decision to talk openly about it and by doing so, as a person with a celebrity status, there are now many more people that know about the disease and are talking about it. It’s always been kind of a dirty-little-secret and it really still is one, but no person chooses to carry this burden. No person asks to live this kind of life. Ultimately, there are aspects of life we may control and ones we cannot.

I often wonder what would happen if many more celebrities came out as she did (more than the ones that already have because in all fairness there are a lot). It will obviously take quite a few more to really draw the right amount of attention to this problem.

How does it impact one’s life?

Another reason I wanted to talk about Lupus was because in my opinion is it one of the more devastating, misunderstood, and under-diagnosed diseases that is likely to prove much more prevalent in the future than people ever imagined as testing procedures and awareness in the medical community improve. The longer a person lives with Lupus, without a diagnosis and proper management of the disease, the odds of a reasonably positive long-term prognosis may decrease – especially when essential organs are under attack due to the disease, such as the kidneys (there are many variables that determine prognosis ultimately).

It’s Not Lupus. Maybe not, but is that assumption part of the problem?

There was once this little show on television called House, or according to imdb.com was originally titled House M.D. The big joke on the show (and I mean this sardonically) is that the patients featured would come to the hospital with acute, bizarre, life-threatening, horrible, and ultimately confusion-causing symptoms. They were then evaluated extensively and at some point a doctor involved in the evaluation would mention “Lupus” and then proceed to point out their reasoning for considering it as a possibility.

Hugh Laurie, who played Dr. Gregory House, would then dismiss the idea and state that it was not Lupus and sometimes give a brief explanation as to why he was discounting it. This was funny to a lot of people. Like a catch phrase or a joke. Except, in reality, there is little that is less humorous than Lupus. I’m not saying the show wasn’t good or interesting; I’m just saying it had the potential to raise awareness about Lupus (and that could have even been a goal that went a little awry), but really it made Lupus seem more of a rare myth-like disease that hardly ever happens – despite statistics that say otherwise. And that those doctors should look elsewhere for answers to confounding illnesses or medical problems.

I am embedding a YouTube video so you can fully get the gist of this before I move on to the more important content of my blog article today. So here comes the copyright notice: All rights reserved. Content does not belong to me. Fair use applies due to only partial replication of the work made available by another YouTube user that is being used for research and/or educational purposes only.

I recommend watching the video because it provides a lot of information about the symptoms, nature, and consequences of the disease, oddly enough, since it takes clips from many episodes – though it does not give a full picture.

Alright, so what is Lupus then?

If you are still with me, thank you for riding this one out and sticking with it. I know it is a longer blog than usual for me, but I appreciate the consideration of the content.

The strange irony of Lupus is that it attacks a person’s own body, using their own dysfunctional immune system to do it. Put as simply as possible, Lupus is an autoimmune disease (there are many kinds, but I’m focusing only on this one). People without an autoimmune disease likely have an immune system that helps to fight off infections and protect the person from disease or illness. Lupus does the opposite. A person with Lupus almost always produces what are called autoantibodies (The Lupus Foundation of America has a vast amount of information if you want to learn more about this disease and the associated challenges with it). So instead of having a protective immune system, the person’s vital organs and tissues are forced to attempt to fight off the damage in any other way possible that stems from their own immune system (treatment through medication, sheer luck, etc.).

As Amy Winehouse once said in a song with absolutely no relevance to this topic, but could still apply if interpreted only in reference to a few lines: “I tread a troubled track, my odds are stacked, and I go back to black”. The same is true with Lupus. The disease can leave you depressed, hopeless, in pain, and it can make a person lose sight of the possibility of better times to come – because deep down they know that even if the situation improves, which they do not really even think it will, it might only be temporary and they might still be treading that same “troubled track”. If that is the case and the person does not change course they will end up at the same destination. Diagnosis, improved treatments, and more public awareness could provide more options for people in terms of giving them more paths to choose to take so that maybe they are not doomed to the destination they anticipate and fear.

Can Lupus be cured?

Lupus cannot be cured at this time. It can be managed well in some, but not so well in others. It may or may not prove fatal for those that have this disease. One of the cruelest elements of Lupus is the symptoms range so widely, change over time, and appear to mimic other illnesses. Diagnosis and disease management are essential in fighting this battle.

What’s this talk about autoantibodies?

Autoantibodies come in more than one form, but this all gets very technical and so in the interest of keeping it simple, certain types of autoantibodies do not focus on attacking foreign invaders, viruses, and whatever else that could cause sickness; instead, they attack a person’s own tissues and organs. One week they might attack the heart. Another week or year, they might attack the kidneys. And they do not necessarily discriminate when it comes to the organs or tissues chosen. They may attack multiple organs and tissues continuously, or may take a break for a while and allow the person with the disease to into “remission” until or if it decides to again rear its ugly head. And more often than not it does.

What is the issue with diagnoses taking so long?

Lupus is further complicated by the fact that symptoms may come, go, and change over the course of weeks, months, and years. This can make it difficult to diagnose the problem because people often assume that diagnosis of an illness or a disease is based on correlating or predictable symptoms. If your nose is runny, you feel tired, and then get better in a week then the odds may seem high to you that it was just a cold. That would be a reasonable person’s assumption at least because it is a common illness with easily identifiable symptoms. Maybe it was a cold, maybe it wasn’t. However, as long as it passes quickly, it ceases to concern the person that had it.

The other challenge with diagnosis is that most people don’t really know what Lupus is, what it does, or what symptoms may suggest its presence. Doctors know about Lupus (at least some do), but as a person that has had Lupus for a very long time, I can tell you that you can go through ten-to-twenty doctors (if not more) before a doctor realizes the need to investigate further or even runs a test to determine if you have autoantibodies (which may not necessarily mean you have Lupus (odds are high though according to studies I have read if you do have them), but if further examination and testing supports the diagnosis then treatment may finally begin).

Diagnosis is a process, but it is one that has to be initiated by a medical professional and sometimes people must fight an uphill battle to make that happen.

A person might show symptoms as a child or an adult. I have read it’s more common among women and symptoms tend to come out in early to middle adulthood. However, I can tell you from personal experience children can and do acquire Lupus. How or why I do not have a clear understanding of yet. There are still many unknowns.

Why am I sharing this with people I may not even know?

I am by nature a somewhat private person. I have thought about writing about Lupus in the past, but the thought of admitting I have it to people outside of family and close friends used to make me feel ashamed. I made a decision that while I don’t have plans to wear a “I have Lupus” or “Actually, sometimes it IS Lupus” shirt at the moment, I am done trying so hard to hide the problem in situations where it is evident I am unwell and I am put in a position to make statements or give explanations that just really are not quite accurate. If asked (and it happens rarely because I think I do well to keep myself looking presentable even when I feel like my grams probably felt at 94 years old), I reply that “I’m just not feeling so great today”, but then the statement is followed up with a question about what exact sickness I think I have (unless I get lucky and get the “oh no, I’m sorry” response) and then I’m left with the option of telling the truth or a lie.

Decisions, decisions. I consider the situation, the person, and potential future consequences of making the disclosure before deciding what answer to give. Sometimes I say, “I’m not really sure” because while it is not the whole truth, it isn’t exactly a lie either. Because you see, when you have Lupus every sickness is attributed to it – whether it is really related or not. That’s another problem encountered with doctors that see Lupus on your chart.”Oh you have another sinus infection? Lupus.” or “Oh you have unexplained bruising all over your body and petechiae rashes again? Lupus.” So basically you get the opposite once you have this diagnosis than the one heard so often in the TV show House.

 

Can this knowledge help you or anyone else?

The one favor I ask is if one or two or three people read this that you share it with others, or share what you have learned at least. Please take away the lesson that we cannot always rely on our doctors to diagnose us accurately, quickly, or even at all sometimes. We have to advocate for ourselves and our loved ones medically. We know our bodies. We may not know what is wrong specifically, but we know when something is not right. However, advocacy is hard to do without knowledge and information. Sometimes it means you have to be assertive, change doctors, and take other actions that cause you to expend a lot of time and energy. However, speaking from my experience this is the only way I know of to get through it.

You may know someone suffering from Lupus who does not even know or suspect it. If you read until the end you may find yourself in a position to play a role in compelling that person to seek answers for acute or ongoing problems that could potentially suggest an autoimmune disease or something else that requires treatments or management. People with chronic illnesses need support from loved ones. We need to know people care. Sometimes the smallest actions of listening or expressing empathy and compassion can mean the world to someone else.

But you don’t look sick…

A common thing people with Lupus hear when they tell someone they have the disease is “but you don’t look sick”. With Lupus you can experience life-threatening symptoms that occur internally that few, if anyone, looking at you would ever pick up on and this is another reason why I think people ignore the disease, or do not really qualify it as potentially deadly. The worst and perhaps most hurtful thing you could say to people suffering from this disease is that they don’t seem or look sick. They are sick, but one of the reasons they may not look it is because of all the effort they put into pretending to be “normal” or “okay” or “competent” or “worthy”. I know many people that have absolutely no idea I have Lupus and probably never will because I do my best to live a good, balanced life no matter what life throws in my direction. Others with Lupus do the same I am sure.

What symptoms might suggest a problem?

Some symptoms to consider (though these are only a few and may also point to a completely different issue include and are summarized based on this site):

  • Going through bouts of fatigue (severe fatigue to the point it becomes a struggle to get out of bed or even think about doing activities that ordinarily would not be daunting). I cannot stress this enough because it sounds like the least significant of the symptoms, but in truth is it one of many that makes the disease nearly intolerable at times and people that have not experienced have no idea just how terrible it is. Also, the doctors I see have never suggested a means of reducing this feeling. I do find that when I am well enough exercise (running, swimming, squats, weights, or anything else) can actually increase my energy level but only when I’m in remission.
  • Headaches
  • Unexplained seizure/s – grand mal
  • Recurring inflammation
  • Fevers that occur on and off, and sometimes for no apparent reason
  • Recurrent infections (ear, sinus, UTI, etc.)
  • Swelling in different parts of the body like the hands, legs, or feet
  • Pain in one or both lungs when taking a deep breath
  • Unexplained rashes
  • Rashes that occur after sun exposure (not sunburns, but a rash or multiple ones)
  • On and off, or recurring loss of hair (that seems like it is more excessive than ordinary shedding of hair)
  • Problems with blood clotting
  • Ulcers in nose and/or mouth
  • A rash on the face (not all with Lupus get it, but there is one in particular called the Butterfly Rash that spreads across both cheeks and nose) that is a potential indicator of a problem
  • Feeling cold often and when others don’t, as well as having issues where fingers turn pale or blue in the cold (the technical term is Raynaud’s phenomenon)

Concluding remarks:

I used to worry that people would think I was a sickly and incompetent person if I told people outside of my immediate family that I had Lupus- especially in the business world. However, after years of experiencing progressively higher levels of work-related success, despite having Lupus, I decided to put the insecurity aside and write candidly in the interest of trying to make some small difference through my writing. My work track record proves I have managed well despite the illness. For others though, you might want to take it on a case-by-case basis as to who you tell. There does not seem to be a definitive right or wrong answer.

Yes, I do get extremely sick at times and I go through some terrible flares (these refer to periods of time when symptoms are constant and severe), but I take the management of my disease seriously and I do my best to live my life to the fullest. I go for long periods of time with mild symptoms that do not stop me from living an active life where I take care of two kids, work a full time job, and volunteer/advocate when possible. I go through times when I do not even think about the fact I have Lupus because I am doing and feeling well.

But with Lupus the tide can turn, and it can turn rapidly. When that happens and the going gets rough life becomes very challenging in every single way for me. The one positive I focus on when this occurs is I have been though it enough now to know that some of the things that get me through include being proactive in seeking medical evaluation or treatment based on symptoms, continuing to study and learn about the disease, live my life minute-by-minute when I feel as though the disease is taking over completely, and then watching with intense focus for the light to finally appear at the end of what can sometimes be a very long tunnel.

 

Thank you for taking the time to read this. If even one person made it through this entire article I would feel satisfied because then it means there is a possibility that somewhere out there it may someday help another person.