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 lymedisease.org 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 WordPress.com 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…

Firesky

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…

Firesky2

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…

http://www.circlingintocenter.com/reflections/2015/4/16/how-to-deal-with-the-fact-that-everyone-else-gets-to-have-a-life

Remembering with Thanks…

B's Bday

Even though today is Thanksgiving for the entire population of the United States, it is also a special day for me because it was the birthday of my most beloved pet, Bosco, who passed away two years ago. He would have been 23 years old today if he was still with me. I don’t think of him as much as I used to but I still miss him very much and without the ability to have another cat, there is a void that remains in my heart since his passing. He was an extraordinary companion during my time of acute illness and I don’t know how I could have made it through those first few years without him by my side in this bed of pain and suffering. So, for Thanksgiving this year, I will give thanks that the Lord sent him in my path to help me navigate the initial stages of Chronic Lyme Disease.

B's cereal

Bosco liked to wait for me to finish my cereal so he could have the milk that was left over. He would patiently wait at my feet while I ate my Frosted Flakes, staring me down as each spoonful entered my mouth, as if to say, “Aren’t you finished yet?” When I would finally finish my breakfast, I would give him the bowl and after only a few sips of the milk he would have had enough and would simply walk away from the dish with plenty left in the bowl. I never could understand what he was thinking. I guess he just wanted a taste of what I was having.

B's nap

Bosco slept a lot as he got older. He had been very healthy throughout his life having only undergone one major surgery when he was 14 years old to remove an abcess from the back of his neck. Otherwise, he had the typical chronic illnesses of old age, a little congestive heart failure, some arthritis, some hearing loss and vision loss and a little kitty dementia that would cause him to cry if he didn’t know where I was in the house. All of his conditions were controlled by medications and he wasn’t in any pain so we elected to let nature run its course and let him pass when his time came. If I ever were to see him suffering, I would do the humane thing and put him down.

B's buffet

As he got older, he had difficulty maintaining his weight and his appetite wasn’t that good. Therefore, every night he would get a “Bosco Buffet” to see what would strike his fancy for dinner! I figured this was an appropriate picture considering that everyone will be pulling themselves up to tables stacked high with platters full of food on this Thanksgiving Day to celebrate over feasts with their families. My beloved kitty got to eat like this every night just so I could maintain his weight in order to keep him alive and with me as long as possible. He would only take a few bites of each dish and leave the rest, but so long as he ate something, I was happy. I went through A LOT of cat food in those final few years.

B's pudding

Then there was always room for dessert! Bosco’s favorite dessert was banana pudding. He would wait until I had finished my share of pudding and then I would let him lick what was left over in the bowl. He was in heaven. He liked yogurt too but banana pudding was by far the best. He would hover over me on the couch like a vulcher just waiting until I would let him have access to the bowl. I was just so happy that he wanted to eat something that I was thrilled to give it to him! Anything to put some pounds on my little man and I was content.

B's bedtime

Then it was time for bed with Mama. He slept by my side every night (and day) for all of the years that I had him. He was the greatest comfort to me during my time of severe illness and never left my side during his last two years of life when I was bedridden and suffering the most. I know that he would have stayed with me if he could have, if his little heart could have held out longer, just to make sure that I had gotten better. He hung in there for almost 21 years by my side and for that, I am so very thankful. I know that he had to cross the Rainbow Bridge and I mercifully helped him go when he was suffering. It was the right thing to do. I will see him again someday and we will cuddle like we used to.

This Thanksgiving, I am thankful for the cats who have been a part of my life Bosco and Meisha. Each of them played a major role at different times in my life, both contributing in their own way to making me into the person that I am today. I will always cherish the unconditional love, support and compassion these animals have added to my life. Happy Birthday Bosco, I miss you very much.

Life goes on…

Pootie

I would like to introduce you to the latest addition to our family…Pootie. She is a toy Poodle that we fell in love with at a local rescue and she has filled the terrible void in our hearts since the losses of our beloved cat and dog over the past few years. Don’t let this picture fool you, she is full of pep and loves to chase her toys around the house! She watches everyone in the neighborhood out the window while sitting on Mama’s lap in the morning at the breakfast table and never fails to let us know with a resounding “woof” when someone is coming to the door. She has really raised the spirits around here and we are lucky to have her.

As far as my Lyme battle is concerned, things haven’t changed much. I am doing very well physically, thank the Lord. I am getting stronger every day, putting on more weight, able to do more for myself, suffering less and even doing some of my own errands. The battle now lies more in the challenge to resume a normal life.

As I mentioned in my previous post, the ability to transition back to living a “normal life” when you have been isolated from society for four years is a daunting task. I lost everything when I became bedridden. I lost my career, my apartment, my finances, my drive to excel at work, my stamina, my health, my confidence, my connections and my ability to relate to others. I became totally self-reliant, alone and comfortable that way which is not something that is easily undone. I have to somehow figure out a way to reintegrate back into society in order to live a life again.

In the past two months, I have taken some steps to do that. I have seen two doctors to address health issues that were not related to Lyme. Basically, I took care of maintenance issues that had been neglected because I had always been too sick with Lyme to get into an office to see to them before. I also wrapped up a tax issue that was hanging over my head and that was a great relief to me. Now I can move forward with some financial strategies before the end of the year which will lighten my burdens. I saw my primary care doctor and started researching for a counselor who specializes in people who have chronic illnesses that are trying to resume normal lives. Maybe talking to someone will help me work through hidden issues built up over these past four years.

I have also been offered a small job in my doctor’s office one day a week for a few hours, if I can handle it. This will not hurt me physically or disrupt my disability status with the government. I need a reason to get out of bed, a reason to get out of the house and this will give me a chance to slowly ease my way back into a work environment under the watchful eye of my primary care provider which is a win-win situation all around. She can monitor my progress while I work and if I am not doing well, I can always take time off with her understanding why I need to be out. I really can’t say enough about how much this woman has done for me throughout my illness. She is throwing me a lifeline from drowning in a sea of despair as I lie here in this bedroom.

If the office job does not work out for whatever reason, I will have to consider seeking the assistance of a headhunter to find employment. I am qualified to do many things but when trying to make a complete career change, in this unstable market and with the limitations that I possess, I can only imagine that I will need some serious help in finding a job. I can’t believe that having a bachelor’s degree and a master’s degree would be a negative thing. Not to mention, I only want to work part-time, with no benefits and I don’t want to make that much money! One would think I should be pretty marketable. Geesh.

It is very difficult to start your life all over again in the middle of your life but what other choice do I have? I never expected this to happen. I began my career push at the age of 25 when I really put my nose to the grindstone, I found EMS, became a Paramedic and got serious about college. I didn’t stop until I was 32 and had finished graduate school then thought I was going to coast along and reap the rewards of all my hard labor. Six years later, I was bedridden with Chronic Lyme Disease and the entire thing was over.

Now, I will be approaching age 45 soon and will have to start all over again, twenty years after the time that I started my first career path. So many questions remain unanswered. Can any of my past carry over to aid my future? Do I even want it to? I have little desire to remain in the same field that I used to work in. Will my body even be able to handle going back to work full-time? Can I face a relapse of my disease? Will work push me to relapse? Will I find a job before the money runs out? How long will my Mother stay healthy? If she starts to fail, who will take care of both of us?

Chronic illness at the age of 39 was never something that I expected to face. I don’t think anyone plans for something like that. Now that it is here, I am just doing the best that I can to deal with each issue as they arise. I am currently at the stage of “how do I reintegrate back into society without relapsing” and it is turning out to be one of the most difficult stages from the mental standpoint. It is frustrating, hesitant, confusing, dark, lonely, discouraging, fearful and agonizingly slow.

I would like to be hopeful. I would like to think that I am highly qualified to do many things and I have such great life experience with all that I have been through that any employer will think I am a phenomenal asset to add to their team. It would be thrilling to believe that someone could hear my story and think, “Wow, this girl has got some serious courage to survive the past four years and be out here looking for a job to get on with her life. We need someone like her!” In all honesty, I am just not thinking like that right now.

I am only thinking of what a daunting task it will be for me to take a shower, put on a suit, get in the car, drive to an interview and survive a half hour of answering someone’s questions without being so tired that I want to throw up. I will be sitting there with my head swirling as I attempt to clearly decipher what they are asking me as I piece together words that sound witty as they leave my tongue while the sweat runs down the back of my neck. I will smile though my dry, chapped tongue is stuck to the top of my mouth. Then as I rise to leave on my unsteady legs, I will use all my power to gracefully exit the building like a swan hoping they didn’t notice that I have exhausted all my energy stores for the next three days.

As I sit before the blasting vent of the air conditioned car, chugging water, stripped of my suit coat, sweating profusely and waiting for my equilibrium to return so I can safely drive home I will remind myself that this is Chronic Lyme Disease. This is my life. This is my future forever and this is what it will take to get a job. Get used to it sister cause it doesn’t get any easier from here. Welcome to the rest of your life. If you thought the last twenty years was a tough climb to build a career, you ain’t seen nothin’ yet.

Went “dark”…

So, I kinda went “dark” there for about six weeks or so on the blog. Sorry about that. It was a combination of having nothing to say and basically wanting to wrap myself under the covers and shut out the world for a little while. I wasn’t feeling poorly, wasn’t particularly depressed about anything, wasn’t busy with other things… I was just blah.

I got hooked on Netflix and spent most of my time watching British television shows, odd I know. What can I say? They intrigue me. I seriously think that I was born in the wrong country at the wrong time period to tell you the truth. Ah well, maybe I will visit Europe someday and find out if I would really be happy living there in my retirement.

Truth be told, I am a little lost right now with what my next move is in life. That is probably what is contributing to my blah status. I am getting better from my Lyme Disease and it is making me antsy to do something besides spend every day in this bed. I just don’t know what that something is supposed to be? I know that I cannot return to my previous profession because my body would never withstand the pressure of 60 hour work weeks and the mental stress that went along with my job. I would be back in full blown crisis in a matter of weeks.

Not to mention, it would be absolutely stupid of me to sacrifice my disability benefits and Medicare insurance on the risk that I could return to my prior profession knowing that there is such a risk of failure. So, what am I to do with myself for some type of future? I would like a reason to get out of bed every day. A small job that gives me some self worth, brings in a little money to help with the medical bills but doesn’t jeopardize my benefits. Is that too much to ask?

It is such a catch-22 when you are placed on disability because they put restrictions on you that make it difficult for you to try going back to work. I want to TRY it out without fear that I will lose everything and then if I fail, I will not be able to get my benefits back if I have to go back to bed full time.

My situation is even more complicated because I discharged student loans too. The government is watching every move I make because they forgave a lot of money that was spent to put me through graduate school. I don’t blame them and I am not trying to “screw them” out of their money. If I could pay them, I would! The trouble is I can’t even work enough to pay my medical bills let alone provide for myself which is why I am on disability in the first place.

It has been very hard to accept how my life has gone from freely providing for others, spending money at will for gifts and never worrying to where I am at now. I think about every trip to the grocery store and how I can not eat because I don’t want to spend the money. I worry about how I am short $300-$500 every single month on meeting my bills due to medical costs. I watch the credit card bill climb and the savings accounts fall. I cry over how much longer I can hold on without a job. I need a job but I simply don’t know what to do for work.

I don’t know what my body will tolerate. I don’t know what I am marketable for anymore. I have a very specific master’s degree that only qualifies me to do a certain job which I can’t do anymore. How can I turn that into something else? It’s a complicated situation that doesn’t have an easy answer. I have spent months trying to figure it out and the past six weeks rolling it over and over in my brain. I still don’t have a solution.

What I do know is that lying in this bed for much longer isn’t going to find me a job. I know that something has to change. I need to make some type of forward motion if there will be a change in my life. Whether that means getting out of the house more, starting an exercise regimen, seeing a therapist, going out to take photographs more often or simply reconnecting with friends again, I must do something to break this pattern of isolation. I have to test this body now and see how much it can handle. It is fine while I am lying here all the time but I have no idea how it will hold up in the real world.

This is my fourth year of fighting Chronic Lyme Disease. I think it has taken up enough of my time now. I want my life back. Hopefully, once I start putting one foot in front of the other the path will just open up in front of me and show me the way. It’s time to come out of the dark.

When you say, “I am sick…”

The following passage is not written by me. It is completely the words of a woman named “torsum” who wrote on a blog that I happened upon. In order to protect her privacy, I won’t say which blog it was but she was talking about the unexpected death of her son. She so eloquently wrote about what it felt like to be treated by the people around her after his death, even those she had known so well.

As I read these words, all I could feel was how I was treated once I became sick and people in my life started to find out. I hid my Chronic Lyme Disease for at least five years because I didn’t want to be looked at any differently. I was right to do so because once I couldn’t hide it anymore, the dynamics of my relationships started to change. Read her words below and adapt them to someone who is fighting an illness. Maybe then, you will know what it feels like when I had to say, “I am sick…”

I quote torsum as I say, these are the people in your life when something terrible happens:

The comforters – these beautiful people are warm and tender. They look into my eyes and see my tears, and they seem to know intuitively what I need. They can articulate how they feel, and recognize my never-ending pain, and sometimes they don’t need to say anything at all because their body language is obvious. They hug and they squeeze my hand as required. They’re not afraid of their emotions and tears, or of mine. They make it clear how much they care about me and how much they also miss my son. They are, unfortunately, so rare.

The try hards – they have their heart in the right place, but they don’t know what to say or how to be.  I totally understand because I don’t know how to be either. They fumble and stumble with words, but their presence is noted and their love is felt.

The fixers – these people are going to ‘cure’ my grief! They tell me that ‘time will heal’, to ‘keep my chin up’, to read this book, to go to church, to see another therapist, to be positive…..but have they ever lost a child? No.

The drama addicts – these people were once friends, lost through the passage of time and moving cities etc. They came out of the woodwork as soon as they heard Will was in ICU. They emailed, sent texts and were wanting to know the details of my ‘crisis’, and how on earth I was coping. Then after the funeral, they disappeared again.

The avoiders – they literally turn the other way at social gatherings, or in the shopping centre. They have absolutely no ability to communicate, although they did send a card or flowers at the start. And if by chance they do interact, there is no mention of what has happened. It’s like he never existed. These people are good to hang out with on days when you are trying to move forward and pretend it never happened yourself.

 

I have had comforters, try hards, fixers, drama addicts and avoiders since being stricken with this illness and that’s ok. I have come to accept that not everyone knows where to turn when someone that they love becomes THIS sick. They don’t know what to say, how to help, what to do or not do at any given time…they feel helpless. What I won’t accept are the ones who gave up trying.

My body may still be lying here in this bed, withering away from disease and pain but my mind and my heart still function and feel. I know now, more than ever before, who is standing in my corner of life and I appreciate every one of them. The others, I have let go of because they did not deserve to be there in the first place.

There is nothing worse on this earth than wasted time and wasted love because God only gave you so much of each. Use it wisely.

How do I love thee…

IMG_2283

This is a photograph of my grandparent’s wedding, may they both rest in peace. My grandfather died at the age of 52 from heart disease and cancer while sitting in his favorite recliner. My grandmother had gone outside to warm up the car to take him to a doctor’s appointment and when she came back in, he had passed. She carried on with her life, in her grief, for nineteen lonely years until she passed from lung cancer. Blessedly, it was a quick passing. A spot seen on an x-ray which showed a large tumor pushing on her trachea and six days later she was gone.

Her three oldest grandchildren (myself and my two brothers) were in her hospital room, while her five children were convening in the hallway as they had rushed there with only two hours notice. I was at her bedside holding her hand, her eyes closed from the morphine and her breaths labored, willing her to go be with my grandfather. I could vividly see him in heaven, putting on his best suit and tie as he prepared for her to come be by his side. They had been apart for so long. I promised her that we would be fine and that it was time for her to go be with the man that she had loved all the days of her life. I gave her the permission she needed to let us go. No sooner had those words passed my lips, she took one last deep breath and left us.

It was the most peaceful and beautiful passing I have ever attended in my life. After a career of working in medicine, I have had the unfortunate responsibility of being at the bedside while many people have made this journey. Sometimes it is harried, loud and filled with chaos as we struggle to fight against the inevitable while other times it is tranquil, peaceful and filled with the tears of acceptance that there is no way to stop it. Either way, the end result is always the same. A person has to leave this world and hearts will be broken as they are left behind to grieve the loved one who has moved on.

Either way, there is usually that one person who meant more than anything else to the departed. A wife, a husband, a lover, a fiancé, a partner or simply that significant other who never had an “official title” but everyone knew was the deceased’s love of their life. They were accepted by the entire family as such, they were at every family function, every holiday dinner, in every family photo, always on the arm of the departed because they were in love and it was as simple as that. Whether the passing was swift or a long convalescence, the special person left behind is immediately surrounded by everyone as if they can help ease the suffering he/she is going through. Ironically, it is at this time when the person typically wants to be alone the most.

They want their memories. They want their loved one’s belongings around them. They want to cry without having to suppress it or explain themselves. They want to touch the things that give them comfort and they want to stare off into space for hours without being asked, “How are you doing?” They are tired of hearing, “I am so sorry for your loss.” It doesn’t help them. Nothing will help them right now.

They know that people mean well so they try to be courteous but the suffering is immense. It is even more difficult to play the host for the days of the wake and the funeral as they shake hands, accept hugs and kisses on the cheek as people attempt to console them while they convey their sympathies. The only peace they have is when everyone leaves the funeral home and they are left alone with the body of their loved one. Even then, the funeral home directors linger politely in the background and they feel pressured to leave so the staff can close up for the night. Time is moving too quickly and soon their loved one will truly be taken away from them and placed in that cold ground where they cannot touch them. Reluctantly, they walk out the door for the night knowing that the next day the funeral home will be filled with people once again and their private time will be over.

Somehow, they survive the events of the funeral and as they watch the casket lowered into the cold ground the world around them ceases to exist. Everything is silent. They don’t know how they are allowing these men to turn the cranks that loosen the straps which lower the casket into the ground. Inside they are screaming, “NO! STOP! Do not put him down in that hole in the ground. It is cold, it is wet, it is dark…he will be alone. Please put me in there with him….” but no words pass their lips. The tears stream down as the dirt is shoveled into the hole. Each clump is deafening.

How do I love thee? How could I not? You were my entire world. My sun, my moon, my air to breathe, my joy, my sorrow. The hole in my heart will never heal, this I know. I have no intention of letting it heal even if it tries. I will make sure that it remains an open, festering wound for the rest of my life because I had my one opportunity at happiness and it was with you. Now, you are gone and with that, you took my happiness as well. I am ok with that. I will continue on breathing in and out every day until the Lord sees fit to take me to you once again. I will fill my days with trivial, menial tasks to pass the time while I wait but nothing will bring me joy ever again. I don’t expect it to. My fate has been sealed. That is how I love thee.

The best that I could do…

Lyme Flag

When someone is bedridden with Chronic Lyme Disease, life gets a little bit more difficult when they want to do something special to celebrate an important occasion. The month of May happened to be Lyme Disease Awareness Month and being this sick, there was very little that I could do to attend any rallies to support the cause or raise funds for research. I would have loved to travel to Washington, D.C. for the annual Mayday Protest and subsequent rallies that transpired at the IDSA headquarters featured in the following news story:

http://www.truth-out.org/news/item/24027-irate-lyme-disease-patients-storm-dinner-party-at-idsa-headquarters

Last year, in 2013, the entire world got involved in raising awareness about Chronic Lyme Disease by lighting Niagara Falls (lime/Lyme) green on May 17th. Canada really got involved in the cause by lighting up the CN Tower green for an evening in Toronto and turning the Langevin Bridge green for a night which is a bridge in Calgary, Alberta, Canada. It connects Downtown Calgary with north-central Calgary. Lastly, here in the States, Virginia’s Governor McDonnell lit up the Governor’s Mansion in lime green on the night of May 17, 2013 to show his support of the legislation that he is trying to push through in favor of better healthcare for Lyme patients. We have many Congressman, Congresswomen and Senators who would like to see us receive the care that we deserve but we still have a large fight on our hands.

Every year, we fight for what we think is right for the Chronic Lyme Community which is: recognition that our disease is REAL, recognition that we are suffering and need help, recognition that the help should come from our doctors and health insurance companies at little to no cost from us and more funding being spent on Chronic Lyme Disease research so other people don’t end up living the hell we are living. It really isn’t that complicated. The CDC admitted between 2013 and 2014 that their estimation of how many people who actually HAVE this disease was WRONG. They thought that only 30,000 people a year possibly contracted Lyme Disease when in truth, over 300,000-400,000 NEW CASES are contracted every year. If they could be wrong about a silly little thing like that, couldn’t they possibly be wrong about how many of us out here are currently suffering and how many cases have gone chronic by now?

People who are living with Chronic Lyme Disease have worked very hard to get the word out about this disease. Every year we spend eleven months getting ready for May…building up the strength to make the posters, booking the hotel rooms, arranging the carpools, making the phone calls to team up with our friends from last year to see who is well enough to make the trip, sending out emails, arranging for the news stations to be at the rally sites if possible, sending out news stories to the papers in the hopes that they will be interested enough to file them, finding the money to buy the plane tickets when we don’t have enough money for our own medicine, packing our wheelchairs, walkers, canes, bags and bags and bags of IV fluids and medications that we will need for the trip and then we head out to the rallies all over the country, hoping against hope that we won’t get sick and end up in the hospital while we are there.

We muster our strength to spend one month, the month of May, trying to convince the IDSA, the CDC and the World that we are DYING of this disease but no one is listening. Don’t let the pictures fool you. We may look like we are not suffering in some of these pictures but it is often thanks to high doses of pain medications that we are even there. It is often the case that we will be at a rally for three hours and then spend then next four DAYS in bed unable to move, even to feed ourselves, or get to the toilet without assistance. We will cry out in pain and discouragement, hoping that we have done enough but knowing that we will have to be back to fight again next year. You can see all of the events, rallies, protests and support programs that went on around the United States by clicking on the link below. Once you click on that link, please click on each of the pictures and you will get further explanations about what you are seeing. Here are the photos from our United States fight in the year 2013:

http://worldwidelymediseaseprotestus.blogspot.com/

The following link is a collection of all the events, rallies, protests and support programs that went on around the world to get the word out about Chronic Lyme Disease in 2013. I know that the people around the world suffer the same physical pain that we do but their travesty is even greater because their governments aren’t even considering their pleas. Most of these patients are having to travel to our country or other countries than their own for treatment. The situation around the world for treatment of Chronic Lyme Disease is horrific and they cannot get care without having to travel hundreds to thousands of miles from their homes. Our poor neighbors to the north, with whom we share a wonderful relationship, are suffering and we feel helpless when we are sometimes 5 miles across the border getting treatment that they cannot receive in their own country. Please take the time to click on the link and see how they are fighting for their lives:

http://worldwidelymediseaseprotest.blogspot.com/

This May, as I was sitting in my bed trying to figure out a way to do anything possible to contribute to Lyme Disease Awareness Month, I stumbled upon a website where I could buy a flag at www.lymeawarenessflags.com. So, I let my fingers do the work for me and I bought myself a flag to hang in my bedroom window. If I am to be relegated to spending my life in this dungeon of a bedroom with the blinds drawn everyday, then I want the world to know that the person who lives inside here is fighting for her life. It may be a small thing, but it was the best that I could do.