The Terrible Teens…

Technically, since our toy Poodle, Pootie, is a little over a year old now she is actually entering her teenage years in “people age” according to the current dog charts. Needless to say, she is starting to act like it. She is rebellious, never brings the ball back when we play fetch anymore, has stopped coming to you when you call her and you can just forget the “lay down” command altogether. She has begun to have a mind of her own while walking on the leash and is not following commands like she used to staying close to Mom’s leg and avoiding traffic.

Worst of all, she has taken on this ridiculous habit of barking at any little noise that happens outside our door like it is someone coming to rob us. Here’s the problem…we live on the ground floor and our front door faces the main entrance walkway of an apartment complex!!! Do you realize how many people walk past our door in a single day? These poor people must jump out of their skin when they walk towards the building and are met with this RAWW-RAWW-RAWW-RAWW until we can get her to calm down and realize that a.) they are not robbers, b.)  they are not coming to kill us, c.) she is safe, d.) there is no reason for this insane barking and e.) she is driving us cray-cray in the process!

However, along with Pootie’s tendency to bark at the front door for any noise whatsoever, which is not always a bad thing mind you, she has brought so much into our lives that I thought that I would give you a little photo montage of her past year growing up with us.


Pootie likes to start her day reading the newspaper with Mama. She has to get caught up on all the latest political issues, doggie park progress and sports updates (especially during football season-Go Patriots!) Occasionally, she finishes before Mom so she just sits in the window and watches people go by. Funny, she won’t bark at them when she can see them coming…unless they have a dog with them or if there is a squirrel passing by. All bets are off then!


After reading the paper and having lunch, it’s time for a walk in the neighborhood or on the beach if it’s not too hot. It can get REALLY hot down here in Florida for little doggies like her so there is no way that she is going out there when it is 98 degrees outside with the sun beating down on her. She wouldn’t be able to handle it. But when the weather is nice, she loves to go for a ride in the car just about anywhere you will take her, even if it is just to run errands! She is still shy around strangers because she came from a rescue shelter but we are slowly getting her socialized with both people and other animals. She has come out of her shell quite a bit already.

Pootie couch

When she gets home it’s time for a little snack and a nice long nap either along the body pillow on the couch (like above) or snuggled up with someone in the recliner. Anywhere there is a comfortable lap or throw blanket that she can scratch into a big fluffy pile to settle down into, she is happy and ready for dreamland. That lasts for a couple of hours and then she is full-on puppy speed again for play time with the toys in the living room!

P in Pat's shirt

Of course, everything STOPS if her Patriots are playing football on television that night. All of her toys get put away early, her teeth are brushed, face is washed and she is in her Patriots Pajamas ready to watch the game with Mama until the final second comes off that clock! She doesn’t even notice if anyone passes by the front of the house because she is so focused on the game. It’s incredible. Either that or Mom’s yelling at the TV is drowning out the noise so she isn’t hearing it….. Did I mention that my mother happens to like the Patriots too?

Close up

All in all, I would say that Pootie has settled in nicely to our house and has become an important part of our family. I know that Mom would really miss the quality time she gets to spend with her when she gives her “brushies” everyday and they cuddle. For me, my special time is nap/cuddle time while Mom goes to church every day at noon and I get bedtime kisses every night before she goes to bed, Hey, I guess everybody has their thing with their pets right? Especially if you treat them like your children like we do.

Pet ownership is a lifetime commitment to an animal in our household. It’s the way that I was raised and it’s the way I will always treat any animal that I take into my home. Whatever they need, no matter the cost, I will do whatever it takes to provide for them until they pass from a painless cause, surrounded by love, if at all possible. Our last three pets were a dog who passed at 12 yrs old, a cat at 17 and another cat at 21(!) so we mean what we say. I imagine Pootie has a long way to go and we will cherish every minute of it.

Little did she know… that when that man shoved her in a crate and put her on a plane in China, with her little red passport and papers to safely leave the country (which we now have in our possession), that she would end up in a home like this! I can only imagine what she went through to get to us. So, thank you for listening to my story about the bundle of joy who brings happiness into my life every day, despite her “Terrible Teen’s” lately. I know it is just a phase and this too shall pass. For those of us who were not blessed to have children, such as myself, our pets mean everything to us.

Media Blitz in Delaware…

Hello fellow bloggers. Just caught this quick video as I was reading my random piles and piles of endless media that crosses my bed-desk every night and I came across this awesome news report that was played in Delaware tonight. I watched in rapture as the culmination of all our dreams are finally coming to fruition….. People are starting to talk about the “possibility” that CHRONIC LYME MIGHT ACTUALLY EXIST!!!!!!!!  I was just so excited that I had to send you the link so you can check it out yourself. Just click on the reporter’s face and the video will start playing. It is in multiple parts so even when she stops, just give it a minute and she will come back on to continue ok? Enjoy! We may be gaining some ground here people…..

PS. If you can’t click on the link to make it pop up on your screen, just copy and paste it to your browser search box at the top of your computer screen, then hit enter. You can also get to them through Twitter by searching #47TTBC. Good luck tracking it down, it is well worth the effort!

Tomorrow is my D-Day…


Yes folks, tomorrow is my first official day of home physical therapy. It is time to make those first moves towards getting out of this bed. I am so sick of this disease and all it has done to my body. It has taken all of what was a nicely toned ballroom dancer’s body and turned it into a shriveled up lump of old lady skin. Maybe I am exaggerating a little bit but that’s what I feel like sometimes. When your weight goes from 127 pounds of solid muscle to 97 pounds of skin and bones back up to 134 pounds of NOT muscle, let’s just say it’s not pretty.

This body has been put through torture over the past four years. I have ingested thousands upon thousands of pills, shoved IV fluids of caustic substances into my veins to kill the bacteria attacking me, eaten or drank the most awful tasting substances you have never even witnessed on those “gross-out” shows on the Food Network, been shot with unknown substances claimed to be “beneficial,” rubbed strange smelling oils all over myself, soaked parts of my body for hours in crystals and powders and food substances that were supposed to help detoxify my system….Oh my Lord the list goes on and on! Literally, I really don’t think that there is much more that I could try to make this disease go away.

So now, I am just going to try to make the best of it and live my life with what I have left physically. Right now, that is not too much, let me tell ya. I haven’t been out of bed since the second week of January due to a worsening of my POTS (that’s the head spinny, legs go numb, bp falls when you stand up thing that I have told you about before like a million times…keep up with the blog people….geesh). So, with all of this time I have been spending in bed my legs have gotten pretty weak and my endurance is really poor. I tire easily and get short of breath with little exertion. I have a heart condition, from the Lyme too, so that acts up with exercise which just adds to the shortness of breath and makes me overheat which also makes me want to pass out. It’s like a revolving door, ya get it? Yah, this physical therapist is gonna LOVE working with me.

I met her last Monday for our initial evaluation and she was only supposed to be my intake evaluator because she is like a supervisor who then assigns the patients to the best physical therapist that will suit each case. After Tanya and I had a chance to discuss my history of how I ended up like this, what my current symptoms were, my complaints, my goals and she heard the treatments I had already undergone (this was about an hour long conversation) the next words out of her mouth were, “Oh girl, I’m keeping you. Nobody else can handle your case.” That kinda made me smile a little, on the inside of course. I’m glad she is keeping me. She specialized in cochlear vestibular physical therapy which deals with balance problems which is one of my biggest problems! Since the dang Lyme hit me I can’t walk past a door jamb without becoming personally acquainted!

The way I see it, if you’re gonna be messed up, then be totally freakin messed up right? I have finally found a group of people at this rehab center that are willing to provide me with the help that I need to get better IN MY HOME and my insurance will be paying 100% of the cost. I could not be happier. The fatigue of having to go to them for all of these services would most certainly make me so much sicker, I would end up hospitalized. They are going to get me a medical social worker to help us get more services for the disabled, which we are not taking advantage of and will help us financially.

They are also going to look for a counselor who will do home visits that specializes in talking with people who have chronic illness and how to cope with it. I had tried to find one myself when I was so sick on home IV antibiotic therapy but I couldn’t find anyone! I was most disgusted to learn at that time in my research that I also could NOT find a single place that provided respite services for a senior adult taking care of a disabled ADULT child. My poor mother was beyond exhausted taking care of me alone and there were no professional companies, covered by health insurance, to provide her even an afternoon off. It was a disgrace. It appears that I won’t have to worry about all of these issues AND be the “sick person” at the same time now since I am under the wing of this new home health company. I can have a home care nurse if I want one, a home health aide if I feel I need help bathing or dressing or cleaning etc. This has been sent from heaven and I couldn’t be more grateful.

Where was this two years ago when I was hooked up to my IV pole at home having seizures in the arms of my mother as she tried to soothe my pain while we rode them out together because we had no one to help us? This has been an incredible blessing to finally have crossed our path so I intend to work my butt off at PT tomorrow with Drill Sergeant Tanya. The time has come to liberate myself from this prison of a bedroom. After five years of stealing everything away from me and taking over my life, MY war needs to end. Chronic Lyme Disease is a battle but if you keep fighting in whatever little way you can, you will always have more power over the disease than it has on you.

I know it’s hard to believe when it has knocked you down for the 5th or 6th time but keep going my friends. That’s what I’m doing. Just keep going. Something or someone always turns up to make it all work out in the end. Happens every time! Just trust me ok? I’ll keep ya posted on my Boot Camp training. Talk at ya soon~~

The word is out…

Video via YOUTUBE.COM from Carol Hicks Sanders, 6/24/2015. Thank you! It was very good.


I have been spending a lot of time on the computer lately and it seems that everywhere I turn, people are talking about Lyme Disease. It is fabulous! I never thought that I would see the day. Could I possibly begin to hope that this disease may actually get some recognition before I die from it? I truly didn’t think it was going to happen.

When I first started searching for why I was “sick all the time” in 2008, I started down the road just like everyone else of being laughed out of doctors’ offices, being told everything was normal, it was all in my head, there was nothing wrong with me, there was no excuse for my pain/sickness, etc. It took three years and 14 doctors before I found my way to IGeneX and my diagnosis of Chronic Lyme Disease.

I knew that I was bitten by a tick in the year 2000 but I never got sick immediately after the bite so I thought nothing of it at the time. I had called the doctor when I got bitten and he said, “Only come in if you start to feel sick with fever or see a rash. Otherwise, you’re fine.” Back then, that was the presiding thought about Lyme Disease. Thank God we know better now and are beginning to get the word out to the community that this is simply so untrue. It’s just a shame the toll it has taken on us (the chronically ill), that it has taken so long for the decision makers to finally hear our voices and begin to realize the truth that this is a Chronic Disease. As each year has passed, we have suffered and many have died while waiting for economical treatment of this disease to become available to the masses.

All of that is in the past now and I am looking towards the future. I hope that the trend of what I have been noticing in the papers, on the internet, on television, in medical journals and around general medical circles is that people are aware of the sins of the past but are more focused on how we can make improvements for the future. That is all we have ever wanted. Let the old argument end and just get us some HELP. Let’s move forward.

It appears that Harvard is now going to be opening a center for Lyme Research which is encouraging. There are people willing to have large corporate fundraisers and big pharmaceutical companies are starting to take notice of this disease which is where all the money comes from of course. But, the biggest concern that I have is that throughout all of this, where is the help for the individual people? It is great that the huge R & D facilities will be getting their millions to discover how the spirochete eats, sleeps and breathes but is any of that money gonna trickle down to the patients who are trying to eat, sleep and breathe?

I just hope that as this disease finally begins to get the recognition we have been so desperately fighting to attain, we will finally get the financial assistance programs to help the patients live with this disease. Insurance should be made to cover Lyme Disease in all of its forms and all of its co-infections and co-morbidities (that means other things that Lyme has damaged on you). All drug prescription programs, especially for those who are disabled, should pay for not only the prescription drugs that we have to take but the millions of supplements we have to put down our throats every year too. Lastly, disability benefits should be granted the FIRST TIME they are requested not after a patient has been denied 2, 3, 4 and 5 times while having to get a lawyer, when they are bedridden with illness, having left their job due to their Lyme Disease symptoms, living off their retirement savings, drowning in debt and then waiting years for their settlement to come through. Dialysis patients are granted immediate disability, no questions asked. It should be the same for chronic Lyme patients.

People with Chronic Lyme Disease have suffered enough. They have lost everything they own, their homes, their health, their jobs and their hobbies. The have sold most of their personal belongings to pay bills, their friends have drifted away into their own lives and their spousal relationships have suffered. How they can play with their children is forever changed but most of all, they have endured such immense physical, emotional and mental pain and suffering there are no words to describe it to you unless you have experienced it yourself. It is about time that this is all coming out of the darkness and into the broad, bright light of day so everyone can see the pure ugliness of this heinous disease.

I am so proud of all the Lyme Warriors who for all of these years have been fighting and fighting, year after year to keep getting the word out there. They have marched on Washington, D.C., organized worldwide protests on MayDay, been on television shows, written endless articles, books, blogs, given lectures and trained people on tick prevention. They put up beautiful billboards on highways all over the nation, held concerts, raised money all sorts of ways for individuals who were in need and they always fought for those of us who were too sick to get out of our beds to be there to fight for ourselves.  It is pretty amazing what can be accomplished by getting together this strong Lyme family on the internet from all over the world, who have continually supported each other through thick and thin, when we had no one else to back us up.

It’s OUR turn to be recognized now. It’s a shame that it meant famous people had to get sick to get the attention of our government in order to make changes but maybe that timing is just coincidental… I doubt it. Rather, I will continue to hope that it was just the years of hard work and dedication of the Lyme advocates who have been breaking their backs on our behalf and the people like me who are willing to tell our stories that might bring some positive change into the future of the world. Here’s hoping! Thanks for being a part of that change.

We get other “stuff” too…

As I was lying here in the haze of my second week of sinus congestion, cold medicine and antibiotics for whatever is clogging the left side of my head, I found myself talking out loud….”Whoever came up with Kleenex was a genius. I wonder if Kleenex is really made by the Kleenex company or if someone else makes it and just calls it Kleenex because I basically call every nose tissue Kleenex no matter who makes it!” Then I realized that I was talking to myself again.

It’s been a rough two weeks people. Well, about ten days really. This sinus thing just crept up on me and WHAMMO the entire left side of my nose, eye and head feels like I have been punched by that Pacquiao guy that everyone keeps talking about. He’s a professional boxer if you weren’t sure. So anyways, my point of this conversation is that even when people have chronic illnesses like Chronic Lyme Disease they also get simple everyday things like the rest of you – a sinus infection. Not everything in our lives is related to our Lyme.

Whenever we show up with a medical complaint everything always gets blamed on our Lyme and that can get VERY risky. If a provider blows off looking into a pain you may be having in your back as simple arthritic bone pain from your disease he/she could miss a ruptured disc, a tumor or even a sign of cancer. If you don’t pay close attention to exactly how your headaches behave and attend to them immediately, the way you should, then you could be missing a bacterial meningitis instead of just a normal Lyme Brain day. What I’m saying is you have to be a very good judge of: “What is a Chronic Lyme symptom for you and what is just a simple head cold?” The providers also have a responsibility to treat you like any other person who walks in off the street and not be blinded by your chronic illness. It’s unsafe and unprofessional.

Sometimes the decision of how sick we really are needs to be taken out of our hands because we are not the best judge. The doctor or the hospital is the authority on cases like chest pain, severe seizures that are either the first time for the patient/last too long/happen too often/are abnormal for that patient/or cannot be stopped, unconscious patients, really high fevers, etc. There are many other times when an ambulance should be called to check on your loved one or you should take them to the hospital or doctor’s office to be seen for something that turns out to have nothing to do with their Chronic Lyme Disease.

Just because we have a chronic illness that we will always carry with us, doesn’t mean that we don’t get other “stuff” too. As a matter of fact with our lowered immune systems we are more susceptible to it! So, next time you sneeze or cough, start by thinking allergies? Head cold? Sinuses? Who have I been exposed to? Maybe I should try some over the counter cold medicine (check interactions with your other meds) before you start panicking about your Lyme flaring up. It may just be a simple cold that will be gone in two weeks.

At least I am hoping mine will. I can’t take much more of this. I am off to go talk in my sleep some more and have strange dreams from this cold medicine. Goodnight. Thanks for checking in.


**Disclaimer: Bear in mind, this is my opinion. I am not providing you with healthcare information as a healthcare provider and this is only my opinion in this personal blog. Do not hesitate to seek immediate medical care if you feel it is necessary for any health condition that happens to you or your child, be that from an office, hospital, MD or LLMD.

They offered their lives…

When I think of all the brave soldiers who have died in wars the numbers often rattle me. I can’t fathom hundreds of thousands in a single war. Fathers, husbands, sons, brothers, friends…. Also, women soldiers and nurses died who were mothers, wives, daughters, sisters and friends, some of them carrying children when they lost their lives. The amount of people simply astounds me. I watch the movies they always play during Memorial Day and Veteran’s Day and I can not imagine that there are people walking this earth who have had the courage to face what those people have gone through in their lifetimes and here they stand on the street corner, right next to me like an average person. I think they are amazing!

Not just the atrocities that they have seen and survived, the horror of what humankind has been asked to do to each other but also the environmental elements they have had to endure, the cold, the heat, the lack of basic needs like food, shelter, decent boots or clothing at times in earlier wars, the lack of decent protective gear even in current wars, the terror, the longing for home and the simple need for the feeling of a moment of safety ~ just for one moment in their day, a single moment of personal safety. Most people will never know that depth of fear.

Memorial Day is a time to reflect upon those who gave their lives while serving in our country’s armed services. They are all heroes in my eyes, the ones who lived and the ones who died. Today we celebrate the lives of the ones who never came home. Below are some photos of the existing memorials we have in Washington, DC for those who served in WWII, Korea and Vietnam. The pictures don’t even justify how glorious they are to see in person so if you ever have the chance to go see them, take your families and honor our soldiers.

There is a round domed memorial (you can the find photo on the internet) located in the same Mall area, located in a bunch of trees called the Ash Woods, which recognizes the servicemen of Washington, DC who served in WWI but there currently does not exist a Nationally recognized memorial for WWI soldiers. There is an organization that is trying to raise the funds and lobby the government right now to get that changed. They have a website at for more information.

Today, we also stop to think of those whom we have lost in the Iraq and Afghanistan Wars. These are the wars of MY generation that took our fathers, husbands, brothers, friends and children. There isn’t a memorial for those lost in these wars yet but time will tell when a National plan comes together to put that in place. There are some small local ones in each town for lost loved ones but when there is a National one built, I hope it is beautiful and right there on the Mall with the others.

So, enjoy the photos and have a nice Memorial Day with your families. We are so very sorry for your loss if you happen to be a Gold Star Family who has lost someone in battle all for the sake of our freedom. Thank you so much for your sacrifice and your loved one’s bravery.




NH Post


D-day Quote


Vietnam Wall




Help from above…

Sunbeams I am gonna need some serious help from above people. I have decided to work on the blog’s format. We are headed into unchartered waters here. I am putting out fair warning now that things could get ugly. I have absolutely NO computer experience whatsoever and no friends around here who do either. My brother originally set this thing up for me and then he said, “I work on MACs, Sis, you’re on your own from here on out!” Since then, I have come to find out that he really meant it.

Needless to say, I am learning from the internet as I go along. Tonight I watched a tutorial on RSS feeds and how they work so that was interesting (snore). At least I understood what the guy was talking about! I know that I put the RSS feed on my site so that you could easily click to their page and see all the latest news that is going on in the world of Lyme Disease. Those are the little news headlines on the bottom right side of the page as you are reading the blog (for those who weren’t aware). Tonight I watched how to set up MY page so you can RSS it to yourself. That way, every time I write an updated entry you will automatically get it sent to your device (phone, i-thingy, or whatever you are using).

I know that I have underutilized this blog. I originally had a place for comments but I didn’t have a spam blocker on my site because we had no idea what we were doing. I had to sort through some pretty shady stuff those first few months, let me tell you! I was traumatized. Well, now I have a great spam blocker on there and I have even put up some blocked words in the URL line and the actual content of the comments themselves which will send the messages directly to spam so I don’t have to be insulted ever again. Technology CAN be a friendly place to exchange words with people if you know how to block out the meanies.

Don’t get me wrong, if you have read this blog much at all, you will know that I have a sharp-edgy-witty-cynical-borderline offensive-firehouse banter attitude when having a lively “disagreement” about something but that doesn’t mean that someone has to get downright MEAN about a friendly little discussion. There’s definitely a difference and I would rather not have to tolerate it in the comment section of this blog if you don’t mind. I would appreciate it, thank you. Enough said on that topic, moving on to more developments for the future of the blog!

I hope to find a way to get it connected to Facebook. I tried to open a Lyme Lens Facebook page but I stopped using it because I already have a personal page (apparently you can’t have two pages which I didn’t know at the time). So, I have to look into opening some type of business page or something like that in order to have a second page dedicated to Lyme Lens. That’s why this hasn’t appeared on Facebook much yet. I really wanted to keep it separate from my personal page because my friends get bombarded with my illness enough, they don’t need to have it all over their Facebook pages from me as well. It’s nice to have a place where I can go that doesn’t involve my disease all the time and that is my personal Facebook page. So, hopefully I can get the Lyme Lens Facebook page up and running soon so I can post the blog there and get the comments rolling.

I DO have a Twitter account for Lyme Lens and I always tweet when I have posted a new blog so people can check it out. I know that I get a lot of my readers from Twitter because of that. I appreciate having that forum and I love my Twitter followers! Thank you for reading! I appreciate you. It’s just tough to formulate good conversations in 140 characters or less most times.

As far as any other social media sites, I am lost. I don’t even know what Tumblr is and I think Instagram has to do with pictures so that doesn’t really pertain to writing a blog (although I DO focus a lot of my attention on photographs…). Other than that, I don’t even know the whole Google Blogger system very well at all either. I asked my brother if my blog was part of and he didn’t know so I don’t even know what type of cool features I can use to jazz up the appearance of it! I am terrified that I will lose all of the work that I have already put into this labor of love, although I would love to try the Jetpack features…

So, I am off to study some more or else you will never see any changes on this blog. I don’t know what will happen to the site. Don’t be surprised if someday it has a purple background with magenta letters, the photos are lined up along the sides, there’s no categories or archives or tags and you can’t find anything except that day’s entry….I will get better at it, I promise.

If you want improvement you can’t be afraid to step out there and make a change, even if it means some mistakes along the way. I am getting so sick of looking at that same damn sunrise picture along the top when I open my own freakin’ blog. I can only imagine that you feel the same way. Time to mix it up people!

Picture worth 1000 words…


When I took this photo, I figured that no one would ever really believe that it was a true picture of the sky that morning reflecting on the river. There were no filters used, no fancy touch ups or computer alterations done to it (who knows, that may have made it even better…ha!) but I only shoot what I see.  It was simply brilliant. I had watched the entire sunrise develop and I was fortunate enough to photograph the whole thing as it transpired. I’ve never seen another morning like that again.

Then I realized to myself, there are always doubters in this world. People who question if something is real. Did you really shoot that picture? Are you sure it wasn’t “altered” in any way? How can you prove that the sky was actually that red as you watched the sun come up that morning? So I decided to take another picture that would give me a little security. It is not as aesthetically pleasing to some, but it will certainly show you the incredible sky which I wanted to capture for you. Take a look…


All I did was back it out a little and include our dock in the photo so you could see the contrast in the colors of the sky, the water, the wood and the solitary light still on from overnight on the dock. The whole purpose of these photos is to show you that minor alterations in angles, light, spacing, timing, and composition are everything when it comes to creating what someone is going to interpret from a photograph.

How does this relate to Chronic Lyme Disease? I think it is monumental. I have been fighting this disease for four years now (three years in bed) and I have watched A LOT of television interviews, print media, medical journals with photos of Lyme patients, movies about chronic illnesses of all kinds AND I have a background of 20 years of working in medicine. My point is… I know how a sick person looks when they are not feeling good, when they are putting on a brave face to get through a short period of time like a doctor’s appointment, or when they really do feel well. I know when someone is really suffering or when someone is faking it. I have watched the slow deterioration of the body over time until a person ultimately dies so nothing I see surprises me.

As Lyme Disease and Chronic Lyme Disease are now beginning to come into the public eye, thanks to the many (non-ill or less ill) people who are fighting so tirelessly on our behalf to get the word out about this disease, I believe that there are a few things that we (the bedridden or more severely ill) can do to help them. We can tell our stories and show our pictures when we are not at our “best” so that society can see what this disease really does to people. We can be the faces and bodies of what Chronic Lyme looks like at its worst. I know that this is embarrassing for a lot of people so that is why they don’t want to put their personal lives out there but it is up to us, the REALLY sick ones, to show society how unbelievably devastating this disease is to us and our families.

We need to be willing to expose the photographs of seizures, falling down, needing shower chairs in our tubs and toilet seat risers in our thirties, home IV therapy that we do ourselves, eating our meals in bed because we will pass out if we sit up, going from a cane to a walker to a wheelchair by the time you are 20, having a handicapped placard at 30 years old or younger, not being able to drive and never being able to live alone again if we are going to make an impact on society. The general population needs to understand that managing a pill schedule that includes up to 60-100 pills a day, some with food, some on an empty stomach, some not near others would be confusing for someone who was perfectly healthy, never mind someone whose hands have tremors and their mind is in an utter fog! Those are the photos that society needs to see if they are to truly understand the devastation of this disease.

I will never forget how excited I have always been when some news station or if a national program is going to cover something on Lyme Disease. I get all prepared for new information, cutting edge medicine or research that has been found or even a realistic picture of what a Chronic Lyme patient looks like but that’s not what I get. There is usually a panel of one or two doctors, the interviewer, a Lyme patient who looks like a model that feels perfectly fine who drove herself there that is not allowed to say more than 35 words throughout the discussion and then within 5 minutes, it is over. This is not helping our fight. When it is over, I am left deflated saying, “She didn’t look like me, trapped in my bed for three years!” To the general public, that story just went in one ear and out the other as they ate their dinner.

My suggestion to the Chronic Lyme community is that if our words are not getting the job done then maybe our PICTURES should try getting the job done. They are supposedly worth a thousand words right? We should stop looking all made up and beautiful at these interviews. We should STOP putting on our “brave faces” in front of these TV cameras so we don’t cry in public. We are suffering and there is nothing to be ashamed about. We should look like we always do…if that means hair in a pony tail or baseball cap, no make-up to show the true circles under your eyes from not sleeping, pajamas or sweats because that’s all you fit into due to the new medications they put you on and you’re all swollen, run a brush over your teeth because that’s all you have the arm strength to do today, take your 30 pills and go to the interview because that’s the best you can do all thanks to a little tick bite. Don’t be ashamed, be sick and be proud of your fight!

Even better, ask them to come to you so you can stay in your bed and not suffer the pain, dizziness, nausea, headache, photophobia, noise, smells, chemical sensitivities and it will also not take you three days to recover from having to go out of the house in the first place! That way you won’t have to bother someone for a ride because you’re not driving right now due to your seizures, you can’t climb stairs so their building better have an elevator and do they have handicapped parking because you can only walk about 50 feet at a time before you have to stop and catch your breath ya know? Did they know all that when they booked YOU as their “talent” for today? Oh no, they didn’t even think of ANY of that because they know nothing about your disease and how seriously ill you really are did they? It is up to you to think about all of this stuff to make the interview happen because you are the one who wants to get the word about Lyme Disease out there so you had to beg the news station for the interview in the first place right? Thankfully, not all news stations are like that but some Lyme advocates have struggled for years to be heard.

Coming full circle in this blog, I just want to say that someone was criticizing Yolanda Foster the other day about how many photos she is putting up on Instagram, Facebook and social media in general regarding her disease and Lyme Awareness as a whole. They talked about how her looks have really (paraphrasing) deteriorated, been affected, gone downhill, etc since being stricken with this disease. I wanted to climb through my computer and strangle the author. Who would have the audacity to say something like that to a sick person? Could you walk up to someone with cancer who was losing their hair and say, “Gee, you’re not looking as hot as you used to these days. Damn shame.” You would likely be beaten to the ground by every respectable male in the closest vicinity. At least, I hope you would.

That woman has used her photos to promote awareness of this disease more than any other celebrity who has been stricken with it and we are simply blessed that she chose to be our voice. Without a moment’s thought she said, “I have been given this disease but I can do something good with my burden. I can help others by sharing my story and how I fight it.”  I have never even seen an episode of her show but I have tried some of the treatments she has done (she has more funds than I do). She will always be spoken of in my highest regards. That is a woman of courage. There are so many celebrities that have had this disease that if each one of them were as dedicated to the cause as Yolanda, I think we would be well on our way to helping a good portion of the people who are currently ill in the United States.

It’s Lyme Disease Awareness Month everyone. Consider taking some photos if you are stricken with this awful disease and start circulating them on social media. If society sees what this disease has done to your lives instead of just hearing “blahblahblah needs more money” then maybe they will begin to see us as people and not just an invisible illness. It’s all in the angle of your Lyme Lens.

On my mind…

It’s been too long since I have visited you, my old friend, my blog. A lot has been going on, that’s for sure. I survived the holidays and was doing pretty well. I took a trip to Savannah to renew my Paramedic license which was a grand accomplishment for what was such a sick Lymie in the past. I spent a week up there all by myself, going to class, staying in a hotel and actually taking care of myself for the first time in three years. Not bad eh?

I came home pretty beat up but hobbled my way through a visit from my brother and his family for Thanksgiving which was a rare treat. They have never come to Florida to see us so I really wanted to make the effort to NOT spend their entire visit in my bed. It was tough but I did the best that I could. They only stayed a couple of days and I wish that I could have been a more “exciting” Auntie to the boys but they understand that I am sick. I was just grateful that they could come because it made my mother happy.

Then January came and I hit the wall (as we like to say in my family). It means my world came crashing down physically. My body gave up the fight and I was back in the bed. So, here I am again, back in the bed 24 hours a day ~ 7 days a week since the second week of January trying to recover any modicum of strength from this disease.

For some reason, my POTS (postural orthostatic tachycardia syndrome) has decided that it doesn’t want to play nice anymore. Basically that means that my blood pressure and heart rate are all screwed up if I try to stand up for longer than ten minutes. All the blood pools to my feet, my legs and feet start to feel like they are covered in fire ants, they get all purple-ish-red (new word for me), then my head gets all woozy and my stomach starts to ache and I realize that lying down very flat will be in my best interest rather soon at that time. So I do!

Therefore, I try not to stand up very much. This has lasted three months now despite changes in meds, increased fluid intake, changes in sodium and all of the usual POTS treatments. We still have some other things to alter so we are working on it but I remain supine for now. I haven’t felt like writing much but something I read tonight hit me so hard that I had to forward it to you all so that you could read it.

I have suffered immensely during this four year journey with the inability to share how much I was internally struggling with the losses in my life and how it was affecting me. This woman has written an article that has in one page, summarized what it feels like to “fall out of society” and have to watch it continue on without you as you attempt to accept the new life you are struggling to live. As I read her words I simply lost it. Finally, I had the words to explain EXACTLY what has been in my heart for all of these months and years as I have sat here in silence struggling. I can’t thank her enough for giving me that voice.

Please read her column so you, my friends and family, can finally know what I have been feeling like for all this time. I am surely not alone if there is at least one other writer across this world who has thought enough about this emotion to put it down on paper for the world to read. I’ll try not to stay away so long next time…