No Fountain of Youth at the Beach

I have a public service announcement: THERE IS NO FOUNTAIN OF YOUTH IN PANAMA CITY BEACH, FL! At least, not that I found over the course of a week. Truth be told, this trip made me feel old. Older than I actually am. I spent 8 nights and days there and guess how many times my faulty body let me actually go down to the beach. 2 (two) visits to the sugar white sand. And two was all I could muster.


The first trip was during the day. I had no umbrella or pop up tent to block the rays from burning my pasty white skin. Mixed connective tissue disease means stay out of the sun. The medications I take for this disease all have warnings about sun exposure meaning stay out at ALL cost. So I loaded down with SPF 100 cream and I went for about one hour to the beach. I watched from afar as my 6-year-old and 37-year-old husband/kids played. Doing things I can not do any longer even though I really want to.
When you go on a trip like this, something we used to do all of the time with no problems what-so-ever, that whole spoon theory really comes into play.

My 6-year-old doesn’t understand it and I don’t expect him to. I don’t even want him to.  He persistently begged me to go to the beach with them every single day. He persistently begged me to go fishing at night at the beach with him every single night. My rationing of spoons told me that if I gave in and went to the beach tonight, I wouldn’t be able to move the next morning. Alternately, they told me that were I to go to the beach today, I won’t be worth a thing when we returned.

spoonisland

I felt like I was letting my son and my husband down. I felt like I was making my husband mad. I don’t know why I felt this way because he never made me feel like he was mad or anything. On the way down there we found this awesome radio station. It was a great mix of older country music and really old country music. Mostly, the music I grew up with. I am a music lover and I love all music. Rap, pop, rock, country, classic rock, punk, heavy metal, you name it, I love it. On the way down the song, “Different” by Kenny Chesney came on. It caught me off guard. I can’t begin to explain why, but it made me cry. And cry…and cry…

There I was, staring out of the window, hoping no one else realized I was balling crying. I couldn’t hide it well. My husband asked me “are you crying?” “What are you crying for?” I told him that I had no idea. And this did make him mad. But I still don’t know what made me cry like that.

Something about being told you have an incurable disease that may eventually lead to your early death makes you see your entire life different. It makes you see your entire future different for sure. It leaves you on an emotional roller coaster ride that you can’t get off of. I have always had a quirky reply to my kids when they say “that’s not fair”. I have always told them that the fair only comes once a year. You buy your tickets, you ride your rides, and that’s all the fair you’re going to get in this life.

Now, I’m getting my moneys worth out of this ticket to this lifelong roller coaster ride.  The highs are rare, the lows are frequent, the upside-down and twisting is constant. My roller coaster ride doesn’t have an attendant. There is no way to turn it off or make the ride end. The person in control of it is in God’s hands. It’s up to Him, me, doctors, and support. IMG_3737

One of the days we were down there my husband talked me into going to play putt putt golf. Side note: I despise putt putt golf. But we went and I have to admit I had a blast. When we got there I quickly realized we were into way more than I originally thought. This place had an arcade, two Farris wheels, bumper cars, bumper boats, and a crazy house, among other things. The golf was inside in black lights. I didn’t win, but I did in my heart. I was having fun. Fun is something that seems hard to attain when you’re in constant pain.  We had a blast. But the trip was much longer than I thought it would be. And my body started to fail me towards the end. My son wanted to ride the bumper boats one more time before we left. I had just started to dry out from the first ride, but you only live once. Something that is much more apparent to me these days.IMG_3745

He also had to go turn his tickets in for a prize at the arcade. I asked my husband if I could ride the roller coaster while they went and did that.  So I did. I rode that roller coaster by myself. And I felt so alive. I felt so free. I felt so content. The ride was fast and short, and rickety. I don’t know why this one ride made me worry I may get sick and lose my cotton candy. Another childish thing I had done that day. I haven’t eaten cotton candy in forever.  It was so good!

My take away from the beach is this: Live every day like you are a kid again if you are able. I’m not, so this rare day wore me out. I didn’t find my fountain of youth, but maybe I did find a sprinkle of it.

I was ready to come home and see my doggies. They missed me as much as I missed them. I felt so bad for leaving them. They don’t understand. But they’ve already forgiven me.  I wish I could forgive myself as quickly as they can.

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July’s Abscence

warriorI haven’t been on here and written much on my blog. I have a lot of reasons why. The first reason is METHOTREXATE! This medication is the Devil and creates the atmosphere of Hell inside your body. I know that its intention is to suppress my immune system and keep it from fighting my body, but it is starting to feel like it kills whatever your immune system hasn’t already battled.

I’m hoping my body will eventually get used to the medication and the bad effects will somewhat diminish.  I start to recover and feel a little better around Friday. So for Friday and then Saturday morning I am back to normal, or my version of normal which still includes pain. Then Saturday I take these 4  Methotrexate pills and the battle begins again.

methcanOn top of the awful side effects of this Satan derived “treatment”, I have started working. I love my job. I am able to work around my schedule and it isn’t a hard job to learn or do. I feel like I should be working during any spare time that I have because I never know when I am going to be unable to interact with the world around me or go down for the count with this disease and side effects.

Another side effect of the disease and/or medications is my inability to sleep. I don’t quite understand it, but I can be so tired and want so badly to go to sleep, but when I lay down I CAN NOT get any sleep. I take Ambien, which is obvious if you have read any of my late night posts. But I ran out of them this week and I was also out of refills. I contacted my primary care physician Monday to inquire about a refill. I had an appointment with them Thursday.  They wouldn’t call the medication in until I was seen. I understand it is a controlled substance. But they have been prescribing this to me for nearly two years. By the time I got there on Thursday I was ill. I was mad at the world. I was mad because I was tired and I couldn’t sleep. breakdown

I started my conversation with the doctor by telling her that I was sorry, but I can’t think straight because I haven’t slept in 3 days. She assured me that she would be sending my Ambien in along with some other stuff she was going to try since my insurance wants $480 a month for Lyrica.  Again, I ended the conversation reiterating my need for my Ambien TODAY. She again, told me I would get it.

I had a late appointment. The pharmacy closes at 7:00 pm. I went to Walmart to get this promised medication and it had not been sent it. All of the other medication had. I called the doctors office again. I was told that the doctor had to sign off on it since it was a controlled medicine. The doctor I had seen was a practitioner. Well, 7:00 rolled around and still no sleeping medicine. At this point, I could spit fire and nails. I literally cried right there in Walmart.

I am not a crier. I just don’t cry in public usually. I am the type of person who will wait until everyone’s asleep and then lay in bed and cry.  I know I shouldn’t keep my feelings bundled up to myself, but I feel as if I appear weak if I cry in front of anyone. Don’t ask me why.

In addition to me not being able to get the Lyrica, my rheumatologist advised me to quit taking the muscle relaxers and Neurontin and didn’t give me any refills of them either. Nor would she refill my Ibuprofen. Ibuprofen is fine, I can get that OTC. The other two, not so much.

So here I am, in pain, now sick from the Devil medicine, with absolutely NO pain medication, NO sleep medication, NOTHING! To say I had a come-apart would be an understatement. Mixed connective tissue disease and rheumatoid arthritis are enough for me to have to deal with. I am going through a lot with it. Is it too much to ask the doctors to DO THEIR JOB? It is so aggravating.

methotrexatepFinally, around 4:00 pm on Friday my Ambien was called in and I got some good sleep last night. My spirits are up a little more today. But today is a Methotrexate day so we’ll see how long that lasts.

I hate to be a Debbie Downer in my posts, but I felt a need to rant and vent about it.

I hope you all have a great weekend!

Small Town, USA

IMG_3584This is from the Florida Panhandle, and I’m sure their Friday night lights boys will one day be playing ours on Saturday’s! But from one small town to another, I’m with you! I love living in this small town which I didn’t grow up. Wether I grew up here or not, it is still My Hometown!!

Source: Small Town, USA