Appreciating the Little Things

Lyme is so weird, yesterday I felt sick but tried to push myself, and it just made me way worse. Today I felt sick, but pushed myself and felt better. You just never know what a day is going to bring. So hard to make plans or keep plans when you just don't know. Today my boyfriend and I  just went on a drive around our town and stopped at our favorite places.

If there is anything I can say about Lyme, is that it has taught me to appreciate all the little things in life, like going for a drive, sitting by your favorite stream, being able to hold your grandchild for more then five minutes. All these things I used to take for granted, now every little thing I do is appreciated.

Here are some of those things that I maybe would of taken for granted before but now, these little moments are the big ones.

When I was away out East, my daughter's boyfriend proposed to her by writing, "Will You Marry Me" on the walls with graffiti, so I wanted to see it with my own eyes.

Fall leaves changing colors.

 

Being Able to Go on Walks and Spend time in Nature

Spending Time with my Kids and Grandaughter

Cuddling with my Pets

And Boyfriend...

and Meeting Lyme Friends for the First Time...

and Spending Time with my Old Friends...

and Family

Seeing all Raya's Firsts

On most days it's the most basic things like being able to stand or shower or a cook a meal that mean so much.

Working on anything Creative

Being Able to Help Someone Else
<3

Vacay in Cape Cod and Reuniting with Lyme Friends

Visiting Connecticut Of course the best part of this two week annual trip we take is reuniting with friends who I actually consider my family. Also meeting with Paul's family who lives in Connecticut. But the first part of our trip is reuniting with our very first "Lyme friends" that I met four years ago at a Lyme gala in NYC.

That trip in NCY was the first time I went to a Lyme event. Thanks to our friend Helen, who's daughter was getting honored at the event, she gave us all a ticket to go for free. That was the beginning of my new "Lyme family." We have all been close ever since. That trip was the first time many of us had travelled or even left our home for that matter in years. We were all sooooo sick we could barely function. But we pushed ourselves and we all met, made awesome memories....and now skip four years ahead..

The Lyme Gala

The first time we all met in NYC. It's funny because everyone says, "You don't look sick." Well look at this group, noone would have any idea that most people in this picture were mostly homebound, Some still are. 

Deb, me & Tracy

Meeting Jordin Sparks in NYC.

Chris and I all dressed up at the Lyme Gala for Turn the Corner, now known as TBDA.

Hanging out with Lisa Markman at the Gala, who will always be one of my bestest friends in the world.

My daughter Brittany, drove us the whole way there. Even when I tried to get out of it, she said, we are going, end of story.

Our group on Times Square. Who would of thought this could ever happen. Eric Rutalante, Deb Rice, Lisa Markman, me, Ashley Van Tol, Chris Nimphius, Chris's friend.

Hanging out face to face with my good online friend Eric Rutalante.

Our Annual Trip Now we meet every year at Tracy's house. Tracy, and her family, Chris, Fanta, Paul and I have met three years in a row now. Each year there are new friends that join us, this year Kara joined us. But each year we meet with old friends and then Tracy has an open invitiation to any new friends that want to join us. So we get to meet new friends like Tia and Tara and Gerald! It's really awesome and I hope each Lyme friend has this opportunity where they live to do this. It's really amazing to be in a room full of people who understand, who do not judge, who are still in jammies too hehe. There is this unspoken bond between us. We don't have to even mention the word, "Lyme." We all know it's there, among us, affecting each one of us. Yet we are here, going on living, still making connections with others and celebrating life. We don't question why someone is still in bed, or why there are twenty supplement containers on the counter or anything like that. We just know and don't have to explain anything.

Tracy's cute cat Sage.

Gerald and his daughter.

Tracy celebrating her son's birthday.

 Taking a trip together to Rhode Island, East Beach

Note: The absense of Tracy. She also suffers from MG, (myasthenia gravis) and is rarely able to join us on our trips.

Paul enjoying the sun.

Fanta looking adorable as always.

Chris splashing Fanta and Kara.

Paul walking along the beach.

Chris, Kara, Fanta, me and Paul.

Looking at back at this picture, I can see where I look tan and happy and like everything is just fine. In reality I was shaking, and feeling like I was going to faint.I remember thinking, "Should I just get up and run out of here?" You know that kind of anxiety that just makes you want to run? That's what I was feeling in this moment. I don't know why, just a Lyme symptoms that through this trip plagued me. 

I was amazed by all the awesome graffiti on this bridge!

Chris, Fanta, Kara, Jenny, Paul, Michael, Ilona and Kelli.

The Waterfall we all met at.

Jenny Rush and Michael Parent being silly.

Everyone waving hi on top of the rock. 

Fanta, Chris and Kara all relaxing on top of the waterfall.

Jenny Rush looking out over the waterfall.

Me & Jenny.

Finally getting to meet my friend Sarah!

Dealing with Resentment Sometimes when we do these trips, we are not sure if we should post pictures or not. We know that those who don't have anyone close to them and can't do these kinds of functions because they are too sick, will feel badly seeing them. But we also still want to post them because we want to show that we have all gotten to a level of functionality after being homebound ourselves, so we do want to offer hope to others. We want others to know they are not alone, that there are people out there who understand and you can make a new family if you are feeling rejected by your birth family.

Judgement from within the community is the worst. I know each time I post a picture I risk getting the comment, "Oh, glad to see you're better, " or "must be nice to be in "the clique," or :"you must be rich or not as sick as me." We get all these kinds of comments on our pictures. I ask that people learn to put this resentment aside. We are all sick, none of us are rich I assure you. We have all just been sick for years and years and learned to adapt and try our best to function around Lyme. We have all been homebound too and are just getting some semblence of life back now. Isn't this what we are all fighting for? To get back to living? So we should be able to vent with each other when things are rough and celebrate with each other when things are good.

Believe me when I say getting all of us to amy destination is no easy feat. We usually end up having to leave someone behind, which makes you feel badly and then we don't end up leaving til late afternoon because that is about the time that Lymies start functioning.  None of us are functional in the morning and it takes time for us to get moving. So we leave late and have a couple hours of living. A couple hours of basking in the sun, and dipping our feet in the water. Man it is pure bliss. I know I for one never thought that I'd ever be able to do anything like that again.

Pauls' Family Then we take a day or two to go visit Paul's family and friends. This is awesome for him and nerve wracking for me since I get nervous being around anyone who isn't sick. But they are so sweet and understanding. Always so very sweet. 

Cape Cod After Tracy's is the trip to Cape Cod. I have always felt like the ocean was healing. I swear I could just sit on a beach everyday and smell the salty air and feel the waves around my feet and listen to the sound of the waves. I love it. Just love it. Since I was little I wanted to live by the ocean. There are multiple places we visit on Cape cod, here are pictures from each place.

Day 1 Chatham Pier and Chatham Beach

Chatham Pier

This is where we go to watch the seals. It's a fishing market that has a pier with fishing boats. The seals swarm around the boats and are there everytime we go. 

If there was only one place we could visit when we do this trip, I'd pick here. Look at these adorable seals swimming around. 

Seal begging for fish from the fisherman.

Chatham Beach

Skaket Beach Sunset
Paul loves photography and sunsets, so one of the things we do is go to different beaches at night to see sunsets.

First Night at Skaket

I started taking pictures of this guy, just because if looked so pretty. But we had no idea the adventure he was about to be in for.

As this man was out there on his board, a team of dolphins raced up surrounding him, played for a minute that swam off, it was amazing!

If you look carefully in this picture you can see the black looking waves..that was the dolphins swimming up to him.

This was the dolphins swimming away from him.

Here's video the dolphins swimming away. I wish I had caught the whole thing on tape.

Day 2

Provincetown

Skaket Beach

Funniness 

Chris holding up the sun.

This was one of the funniest moments ever with us, Chris was trying to post to make it look like he was holding up the sun.

Fanta holding up the sun.

Ok, so she's not anywhere near the sun.

Kara holding up the sun.

We finally get it right.

Apparently at some point on this vacation I broke my neck.

Everyone imitating the "Lisa Tilt."

Fanta carrying around Cody.

Another Sunset at Skaket

Day 3

Highland Light

First Encounter Beach

Tracy, Blake and Buddy.

The Downfall
Emotional:
Everytime we go on these vacations with each other there is a down side. When we leave, you go through a kind of withdrawal from each other. It's one thing to be online with your Lyme friends everyday, it's another to actually have someone near you face to face that totally understands what it is like to be "us." There is such a bond that grows and a love that fills your heart, that you go through a mourning when you have to leave each other again. It's like a empty hole in your heart.

Physical:
Now everyone with Lyme knows this side of life with Lyme. When you do something physical, you will pay for it. Everytime a Lymie has a good day and takes advantage, later that day or the next day they will be in pain, sore, anxious and just plain worn out, Almost like a vaccum cleaner sucked the living energy out of you. It's the price we pay. Sometimes it's well worth it to be able to live again, to make memories with your family, friends and pets.


On this particular trip, in the pictures I know I look ok... in reality I was struggling every single day. Every single one of us did. As I explained up above we basically couldn't leave the house until at least late afternoon and most of the time at least one of us could not make it at all to our little ventures.

My own issues on this trip were pain. I used to be a completely neuro Lymie. My symptoms have always been dizziness, weakness, insomnia and fatigue in the day. I usually feel too weak to walk more then a couple feet at a time. This year something changed and pain was added in. God bless all of you who have dealth with this from the beginning because it's terrible! There is sometimes no relief at all.

My back was an issue thoughout the this whole trip. I can't take pain meds or muscle relaxers, so I ibuprofened it up every four hours starting from the time we hit Chicago (3 hours from my house) until the time we got back. There were times I didn't think I could make it to the ocean, trying to get through the sand would hurt my back and legs soooo bad. I pushed myself of course! I wasn't going to drive 20 hours and not be able to put my toes in the ocean!

On the way home, my back hurt so bad, by the time we got to Chicago, it was in spasms and I tried to take a muscle relaxer I had saved in my purse from last October when I threw out my back the last time. I know I have adverse reactions to everything so I cut the pill in quarters and only tool one quarter of it. I had a bad reaction. I immediately felt "heavy" like I coulnd't talk or move. Then it felt like my throat was closing. Next I got all itchy on my leg and then my muscles started twitching and felt like little muscle contractions. I couldn't stop shaking.

We were in the middle of downtown Chicago rush hour traffic. There is not exactly anywhere to pull over and neither Paul or I have phones. So panic sunk in. I tried to breath slow but felt like I was losing control of my body. I felt like I was going to faint. As soon as we got passed Chicago to a town called, Rolling Meadows," Paul pulled into an emergency room.

Of course there was not much they could do, I can't take many meds, Benedryl makes me really sick and basically I'm a big pain in the butt with my fear of meds. But I just wanted to be monitored to make sure this reaction was going to go away. My head kept flushing, it felt like all the blood was rushing up to my head and not coming down.Really scary feeling.

Eventually they let me go home with a script for Toridal, a non narcaotic anti inflammatory and valium. A muscle relaxer that I can handle small amounts of in the past. Paul drove me to the pharmacy and dropped them off. We got home and realized I had left my purse in the ER. We called but it was gone. We never did get it . So the next week was trying to get driver's licesnses and medicaire and medicaid cards again. Fun. Also when we tried to pick of the prescriptions the pharmacy said Medicaire and Medicaid woulnd't pay for them because they were written by a doctor out of state. So no meds for me.

Since this vacation my back has been messed up. I didn't get to hold my grandaughter for almost a month! To me that's torture! Not only that but I almost feel like I got reinfected. I did pull two things out of my leg, well one from my foot and one from my leg. I thougth maybe they were sand fleas because they were biting the crap out of me at the beach. I had such a bad reaction to them. Noone else did, so I hope I didn't get another infection from them. I have felt extremely tired, back pain from hell, head pressure really bad, just extreme fatigue, like it's hard to make myself get out of bed and walking wears me out like I'm 90 years old. Reinfection? Flare from stress of travelling? Who knows, it's just not been fun.

Was it worth it to see my Lyme friends? Yes.

Will I do it again anytime soon. NO! I need recovery time lol. I'm really scared to try to drive again. Paul is planning a trip for us to go to Florida in December as I'm writing this and I'm honestly panicking. I love travelling so much and finally have someone to travel with and now I don't know if it's possible anymore if my back stays like this. Neither of us can fly so we have to drive. Our dream is to get an RV. But you know how it is in the Lyme life... noone has money.

Which brings me to the next subject before someone even says it.

How do you afford these trips? I know I don't HAVE to explain myself, but I want to. People  have helped me travel to get to Lyme protests all over the country and I feel like they might feel upset to see me travelling on these trips and think, how come you can afford that one?

Well this is how we do it. 

1. We moved to a room. Yep not a house, not an apartment, we rent a room. A tiny tiny room. We did this to save money so we can live together. Since Paul's family is in Connecticut and mine is here in Wisconsin we compromise, he agrees to live here in Wisconsin, if we can travel throughout the year to visit his family who are in Connecticut and Florida. So at least twice a year we have to do these trips. It's my compromise. So rented this tiny ass apartment so that we could save money on rent and put it away for trips. Do I like living in under 300 square feet?? Hell no, I have 2 cats and a dog and me and Paul here. It is very hard and there is no room. My little room is basically a bed and toys for Raya, my grandaughter. I hope next year we can find a bigger yet still cheap apartment because it's too small. But that was 1 sacrifice we made.

2. We signed up for Priceline to get the deals everyday. We got three nights in Cape Cod for $200 by paying early for a hotel. Yes, it was a cheap hotel, not the best hotel but it was somewhere to sleep. And honestly I like the little cheap hotels better because you can pull your car right up to your door, and get your suitcases in and be done with it. No walking through big lobbies, no elevators, no carrying suitcases all over the place up and down hallways.

3. We had enough money for 1 nice meal. That part is really hard for me. Paul does ok with it. I like seafood and when I'm in Cape Cod, I want to eat crab legs and lobster and all that kind of yumminess. But unfortunaly, we can't, so when we did go to the nice restaurant, I ate only half and took the rest back to the hotel for the next night's dinner. We are experts at eating off the Wendy's dollar menu too. Not good for you, not healthy but it's the sacrifice we made to be able to go sit by the ocean with our friends.

4. The whole first week we stay at Tracy's house. She is a blessing, not only is she my good friend, but she invited us all there for a week, never asking for money for anything, food, heat, water, pool... Thank you Tracy and Blake!

5. Gas: This is our biggest expense. We saved $300 for gas on the way down there. That includes tolls and  hotel to split up the drive. Always stop and get a coupon book in the state you are going to stay in! We got a gorgeous room in a hotel in Ohio for only $35 a night. We had enough gas to get there but not for the way back. Since Paul has friends down in Connecticut he asked if anyone had any extra jobs for him to do while he was there. Paul works in computers and one of his friends needed a secrity system set up so the first three days we were at Tracy's house Paul left everyday to go work, for gas for the way home.

6. Everything we go to is free. We visit free beaches, visit lighthouses, and go see the seals at Chatham Pier, drive through Provincetown. All these things are free. Our interests lie in photography and nature, so I guess we are lucky that we are happy to do the things that are free.

So that is it, a summary of my trip. Yep, this is all part of my plan to get back to living! That was the point of this whole blog. Reality has slapped me in the face a couple times, reminding me that no matter how hard I try to wish this disease away, you just can't. I have it, I'm still sick, but I will continue to try to enjoy whatever moments I can, while I still can.