What They Don’t Tell You

As a person who suffers from chronic illness, I am finding I miss things I swore I hated.214460-I-Miss-You-Pig-Time

I swore I hated cooking.  Sure, it is nice to have a home-cooked meal and it is an amazing feeling when you are the genius who concocted a delicious masterpiece the times you got it more than right.  But let’s face it, there are times we all bomb out and knowing you just poured your blood, sweat, and tears into the yucky meal you are all but forcing yourself and your family to eat is a miserable, embarrassing feat. Not only did you work your butt off for it, you now have to eat it and clean up the mess. There are times there are so many leftovers but you know there is no sense in putting off disposing of it by putting them in the refrigerator.

I thought I hated it, but I would soon come to realize I didn’t. I still don’t like cooking because of the reasons mentioned above. However, I wouldn’t have quit trying if I had the choice.  I still cook but it is a rare occurrence.  I don’t have it in me to churn out a meat and three 5 to 6 days a week. Now, I’m lucky if I do this one day a week. ff5ad80873f9181d287eaebbd4b7d9b6

I still eat and my weight is the most obvious verification of this. But I don’t eat as healthy and I don’t enjoy it the way I used to. My grandmother was the best cook to ever walk the face of this planet. I do believe that in some of my dishes her talent was obviously passed down. However, unlike me, I can’t recall her ever producing a bad meal.


I hated cleaning. I still hate cleaning. But what I hate even worse is not being able to keep my house as tidy as I should be able to. Even asking the kids to pitch in doesn’t suffice in this area. Kids cut corners. I know this to be true because I once was a kid, even though that seems like a gazillion years ago.  My house is a perfect example of it not being done the right way, also know as my way. I-Miss-Myself-simple-title-graphic


Your house is supposed to be an example of you. If my house is an example of me, well, I am very unorganized. It isn’t at all nasty or anything. I don’t have a bug problem or things growing from uncleaned spills or dishes. I have a home that looks “lived in”. And there is a whole lot of living going on in my house. However, silently, I am not living the way I want to or how I envisioned. Nobody wants to hurt. Nobody wants to be sick. Nobody.


I have always thoroughly enjoyed a good shopping trip. Now, I dread a simple trip to the grocery store. I despise going Christmas shopping. I despise going shopping for anything. Even if I have plenty of money to spend, the drain it puts on my body is something with no monetary value.

Speaking of Christmas or any other holiday, this too is an area I don’t particularly enjoy any longer. This is probably the hardest thing to have to admit. Christmas had always been my favorite time of year. It is supposed to be a cheerful occasion. Now it means several shopping trips are needed. Decorating the house is needed which also means taking the decorations down is in the near future. Cooking is needed as well as the trip to the store to get the correct goods followed by another trip to get the things you forgot. youdontkno_ivpyrEDR

I used to put up so many decorations it looked like Santa threw up all over my house. I have Santa figurines I have collected since I was a kid and they are usually spread throughout the house. I even had a tree in the kid’s bedrooms and plenty of decorations to decorate them all. This year instead of dragging all of my prized decorations out, I went to Walmart and bought a few jumbo packs of decorations and put them on the tree. Not a single Santa was displayed from my collection.


viciouscycleAnd here is the thing that sucks the most about what they don’t tell you you’re going to miss: The knowledge that you have of things not being the way you want them or think they should be. The house isn’t cleaned the way I should be able to do it. The dinner isn’t healthy and doesn’t taste as good as it would if I had cooked it. The holiday wasn’t as exciting as it could’ve been if I had been able to accomplish what I once could. It is all MY FAULT. I can’t blame it on a single other person and there is nothing I can do to fix it either. It is a vicious cycle.  A cycle that doesn’t seem to be breakable. And one that makes you look like a lazy person who doesn’t care enough about these things. And to keep from looking even worse or like you are blaming your disease on every missing aspect of your life, you just accept fault. You are defeated.

Bitter Cold Break

I have been on a small hiatus from writing on the blog lately.  I have fussed about this before, but maybe it bears mentioning again.


My insurance policy I had last year decided they no longer would cover my Methotrexate in November. I was also still dealing with the broken foot which is, quite possibly, the most painful injury I have endured in my life. youknow19


I have also complained a great deal about the side effects of Methotrexate and I promise you now, I will NEVER do that again. You see, you don’t realize the extent that a medication is helping until you abruptly quit taking it and your disease kicks into high-gear. No, Methotrexate is certainly not a walk in the park, but MCTD and RA mixed with mending bones and the wonderful winter we’re having this year are far worse than a Methotrexate hang-over (for lack of a better word).


In Alabama, where I live, it is extremely rare to see snow. We have no idea how to handle snow here and our entire state shuts down at the mention of it. So for it to have snowed twice in one year is kind of a big deal. Years ago, I would’ve loved it. It’s exciting to experience snow when you aren’t accustomed to it. But when your bones ache all over on good days and alarmingly alert you of unstable air outside on not-so-good days, they darn near give up on snow days.


Another problem which I still haven’t found a resolution to is cold feet. I have written about this before. I am so determined to find a good solution to this problem but I am starting to feel deFEETed. I know that isn’t how you spell that.


My feet will be cold for so long that they pure hurt. And then when I have finally found the perfect combination of cover, sock, heating pad, and position to warm them they quickly go from Jack Frost to Satan’s den. There is no in between.


The morning of the last snow day we had I awoke thinking I may be running a fever. I thought this because I couldn’t get warm. I couldn’t get warm because our heater decided to take the day off. Not only was it not heating, it was blowing cold air. I think it took the better part of the week for my body to warm up from that problem. Luckily, my husband is friends with the local AC/Heater repair guy.


I couldn’t tell you the technical name for the thing-a-ma-do-hicky that is broken on our heater, but I can tell you that it works intermittently now and that if I want to fix this it’ll cost around $500.00. Considering the fact that in Alabama we typically need heat at night and air conditioning during the day and that it still works some of the time, I can not justify that expense right now. If it ain’t broke (completely), it doesn’t need fixin’ right?


With all of this being said, I have had a lot more going on this winter which I will save for another post since they have been few and far between.


My son has the flu so I am off to spray some more Lysol. Ya’ll pray that we keep it from spreading to the rest of the family and pray that he gets well soon.  He says he’s never been this sick in his life and coming from him, that speaks volumes!


It’s Football Season Ya’ll

lovebamaMy favorite time of year is finally here. I have to admit, I hibernated at the end of last years football season.  I take Alabama football seriously.  And by seriously I mean, insanely so.  I have a selection of lucky shirts, socks, pants, blanket, underwear, and even where I choose to sit and in what position is of great significance to whether The Crimson Tide wins or loses.  If the combination of attire and position isn’t working and we are doing badly in a game I have to change something, if not everything. I get mad at anyone else who isn’t playing along with my mind games too. Alabama performed badly for an entire half of one game last year and ya’ll, it was entirely my husband’s fault. He wore the wrong hat.

tidecomingI am fully aware that all of these shenanigans are insane. I don’t care. It is something that I have done for as long as I can remember.  And I know I’m not the only one who does this stupid stuff. I mean one of the things that my husband and I really hit it off on when we first started dating was Alabama football and our silly rituals. One of us got stuck watching the remainder of a game in the bathroom.

So, this year I am in the market for a new “lucky” Alabama shirt. I am guessing the luck wore off of all of the other ones in the final game of the year last season. The national championship game. The cause of my hibernation for a little while. I guess I am a sore loser. Alabama fans, myself included, have become spoiled. God bless Nick Saban. I don’t know what we will do if he decides to retire anytime soon. Being a hard core Bama fan has had it’s up’s and downs. Prior to Nick, we had several Mikes to enter and be ran out of the Alabama family. None of them would ever add up to Bear Bryant.  We had some good coaches and we came through every now and then, but not enough to make National Championship t-shirts and memorabilia expire.  Our 1992 National Championship car decals and shirts were good for 17 years. (mine weren’t due to size issues)bamacrew

If you are a football fan then you either love Alabama or you love to hate Alabama. That is part of the deal that comes with being legendary. I am good with it. What I am not good with is losing and knowing we should have, could have, would have won a game that we lost. The BIG game. The one that determines who is the best.  It was decided last year that Alabama was not the best. And that chip on the shoulder of those big boys will shine this year. It won’t (I hope) happen again! But I must do my part. I must find the winning combination attire.

alabamaweekAlabama football is not the only favorite of mine. My Choctaws started their season with a win Friday.  My teenage boys both play. They didn’t play this game. The youngest is having to pay his dues as a youngster on the Varsity team and the oldest hurt his shoulder in a scrimmage game week before last. He is okay, he will play this week. So, I have a dilemma… Alabama’s first game is against FSU. FSU and my Choctaws have the same tomahawk chop and chant. I know that if I partake in this Friday night, my luck significantly changes for Saturday night.  OH MY GOODNESS, I AM CRAZY!

flareflareIn other news, I feel like crap. T-Total, poo. I guess I am having a flare. The pain associated with these abbreviations is constant. It’s hard to tell if the pain is just getting on my nerves or if I am having a flare which is more painful than the constant pain I experience. Last night, winter came. I have been waiting on winter for 7 seasons now. It finally came, and now we have to wait an entire season to see what else winter does.  And guess what fellow Game of Thrones fans. Now that winter is here and leaving us hanging for an entire season, we now know that the next season will be the last. What the what? I realize the budget for a show such as this can get pricey. I realize the actors now demand better pay. I understand every drawback HBO seems to have. But what I don’t understand is the business decision to end the best show HBO has ever produced. I guarantee they have gained more subscriptions solely because of this show. I know that HBO is NOT cheap. I know they’re making money and significantly more because of GOT!

Last night, winter came. I have been waiting on winter for 7 seasons even though the raven and John Snow can go back and forth from Winterfell in one episode. It finally came, and now we have to wait an entire season to see what else the slow walking, dead winter does.  And guess what fellow Game of Thrones fans. Now that winter is here and leaving us hanging for an entire season, we now know that the next season will be the last. What THE wha—-at?

I realize the budget for a show such as this can get pricey. I realize the actors now demand better pay. I understand every drawback HBO seems to have. But what I don’t understand is the business decision to end the best show HBO has ever produced. I guarantee they have gained more subscriptions solely because of this show. I know that HBO is NOT cheap. I know they’re making money and significantly more because of GOT!

They better have some huge, expensive tricks up their sleeves to appease the humongous fan base for their final season. HBO, you have been warned. got

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.


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.

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!

How To Begin a Work-From-Home Search

workathomeAs many of you know, I have been on a mission to find work from home to support my family and medical bills. I have been at my wit’s end with it and I have searched for what feels like years. In reality, I have only been hard at it for about 3 months. But still, 3 months is 3 months. Because I now have some knowledge of the many different opportunities out there, I felt a need to write about it in hopes to help someone else out.


Now I’m not getting rich over here. Not in the least. But, I am making an okay hourly rate doing a job that isn’t very challenging. And the best part –I do it in my pajama’s while watching TV.  After a little time of vigorously looking for reputable work-from-home opportunities, I felt defeated. I had applied for so many, and I would get accepted to some only to find out the pay wasn’t worth the time.  I have come across so many scams that I can’t list them all. Some of these scams seem so legit until all of the sudden it’s so apparent that they’re not, that you feel like a royal idiot.

ratraceFinally, last month I was reading comments on a post that showed up in my newsfeed on Facebook. The original post was, indeed, another scam. I learned very quickly to read the comments on listings such as this before gullibly trusting the pitch. I found a couple of posts that talked about one website they had found to be the best, scam free, work from home portal. That site is www.ratracerebellion.com. You can thank me later. Go ahead and sign up for e-mail notifications with them. They’ll send you daily e-mails on the newest, best listings. Some of these fill up fast so you will want to stay on top of them. I made it a job to find a job.  I was finally getting somewhere when I started to apply for these jobs. I was taking tests left and right and I was finally hired by a company called Appen. Now, this company isn’t the greatest in the world, but it does pay. The testing for the jobs they offer is long and a little confusing.


I worked for them for about two weeks until I found another, better paying job. Here is another little nugget that offers hundreds of work-from-home opportunities. This is the one I am currently using to pay the bills: www.upwork.com

When you sign up with Upwork there will be some tests you can take to help kick-start your profile. Don’t worry, if you don’t make a good score on a test you don’t have to include it in your profile.  You will also want to fill out your work history and write a small bio about yourself. Upload a picture. You don’t HAVE to have a picture, but when you are working for people you will never meet in person, they want to be able to put a face to your name.

I have been scammed once on Upwork. I got an invitation from a company who wanted to hire me and they wanted to talk to me on Google Hangouts about the job. The pay started to sound too good to be true and my guard went up. Then the so-called employer told me that they wold be sending me a computer and a check to have the software installed on the computer. They said I was to take the check to the bank and deposit it and send them a picture of my deposit slip once I had. DING! DING! DING! DING! This round was over for me! The next day I received a check by FedEx for $4,500.00. The guy who I had spoken with about this job the day before was now calling me repeatedly. I told him that I would deposit the check once I received the laptop from them. That only made sense to me. I also told him that I would not, under any circumstances, send a copy of my deposit slip to him or anyone else. That check is still collecting dust somewhere. So the takeaway from this for me was to make sure that whoever you are dealing with on Upwork has verified payment and has actually already paid some other people within the Upwork community.


To get work through Upwork you have to send the employers proposals. Some jobs are for a flat rate fee and some are for hourly work. You will see how much they have budgeted for the jobs. Keep in mind that Upwork makes a percentage of what you make and it will be deducted out of your pay once the work is completed. This may scare a lot of people off, but I look at it this way… I would rather give my banking information to one company with a more reputable name than to hundreds of different companies any day. The fee’s that they take are as follows:

  • 20% for the first $500 you bill a client across all contracts with them
  • 10% for total billings with a client between $500.01 and $10,000
  • 5% for total billings with a client that exceed $10,000

This sounds like an awful lot, I know. But if you factor this into your proposals you defeat the problem before it ever becomes a problem.  Also, you can renegotiate pay while working for a client. There is a plethora of help to be found from the Upwork community as well.

If you are beginning your journey to find work-from-home jobs, I hope my approach will help you find your way. A lot of really great jobs require you to have worked from home before. This seems to be the best way to get that experience added to your resume’ that I have found.

I have also been using a lot of different reputable sites to do survey’s and coupon type apps. Again, here you will find a lot of sites are scams. I won’t delve too much into this in this article because that may get lengthy, but I will leave the ones I use to make the most here. Please use these links I have listed because with the majority of these companies, you make money from referrals. Also, the people you refer get a nice starting bonus.


Pinecone Research




Vindale Research

Inbox Dollars


Panel App


I will update this list because there are more. Happy money maker hunting!


Thoughts on Methotrexate

I stated that in the end of May I went back to my rheumatologist. I forgot to mention the new game plan. Imagine that. My ADD butt forgetting to post an update.

image1 (1)

We came to the conclusion that the root cause of my rashes was the Plaquenil. She also said that many of my painful areas are trigger areas for fibromyalgia. So here’s what we did as far as meds go:

Stop taking Plaquenil immediately and give it three weeks to allow it to get out of my system. After that period I will start taking Methotrexate.

Stop taking Gabapentin and Flexaril and replace it with 75mg of Lyrica twice a day.

My three weeks will be up Monday. From what I have read, the Methotrexate doesn’t look like a whole lot of fun. I’m interested in hearing from any fellow spoonies who take it and see how it has helped you and what drawbacks you have. Lyrica didn’t have much if any, effect on me. (As usual, my Ambien is beginning to have one on me as I type)


To make matters worse, I’ve apparently, unbeknownst to me, moved to the Amazon rain Forrest. It has been raining for nearly 4 months now. Rainy days get average people down, but they take away spoons from people like me. It’s been rough. I have already been complaining about the rain and then Cindy brews up and brings in more rain than I have seen in a long time, if not ever.


Back to medicines, what do you do to get the cost of your medications which do not come in generic form down? I need advice so that I don’t have to take out a 2nd mortgage or anything next time I visit the pharmacy. I hope you all have a dry and great weekend.