Today is a pain day. I have muscle spasms in my back that you can feel. It hurts to sit, stand or lay. This sucks.
I need to go to the post office today to mail cards to my family in the Philippines. My grandchildren wrote letters and cards to their cousins and I am mailing them today. I have to go to the post office because it requires special postage. I hope she enjoys them!!
I also need to get a few other things while I am out and about. Like some groceries. Oh joy. Not. People tend to be rude this time of year. I want to get in and out quickly.
I am hooked on this cheese they sell at Krogers. It sounds gross but is delicious. It’s called “cranberry cinnamon goat cheese”. Yummmmm!! I tasted it at a wine tasting and the stuff is like crack!! I’m hooked for sure! They tried to get me to try the blueberry goat cheese last time but I said no. One guilty pleasure at a time!!
My latest urine test showed bilirubin in my urine. Has anyone ever had that? This is a first for me. I looked it up and it says online that it is liver function related. Great. Yet another organ affected. I also had both red and white blood cells in it as well. So, did another test and hope to hear back today how that went. It’s always something!!
Hope you all have a great day surrounded by loving people!!
I admit it. I am a geek. I love the science fiction show called Doctor Who. It amazes me that I like it. It amazes my family too. I am not the sci fi type. That is why it is all the more interesting to me. I fell in love with the show on Netflix. I have watched all doctors at least once. I started way back at the beginning. It is a great show!
Today, in a worldwide simulcast to 76 countries, the special 50th anniversary of the show was shown. It was a BIG DEAL. I loved it! “The day of the doctor” was the title. If you are not a fan you will not understand. If you are a fellow “whovians” as we are called, then you get it.
I am working on getting my grandkids watching it as well. A show that is 50 years old deserves some acclaim. So, on this 50th anniversary, I declare my geeky whovianhood. It is only proper to share it than to hide it. So, my favorite line from the special is this:, “Real men are forged with fire, but it is the privilege of a lesser man to light the flame.” Profound words indeed.
So whovians, enjoy the special and now we await the Christmas special where we will see Matt Smith regenerate into Peter Capaldi. It is always strange at first with a new doctor, but funny how we go headlong into the stories and end up forgetting this us s new guy. We grow and accept the new guy and his ways. Such is life for a whovian.
I’m frustrated. I have had this pressure in my shoulders and lungs for a week now. It feels like when you have surgery and gas gets in your shoulder. Except my lungs feel tight too. Any input appreciated. I just saw my rheumy last week before this started. I also have had bilirubin and white blood cells in my urine. It’s like I am falling apart. I guess I will see my gp on Monday if it keeps up. Sigh
The title says it all. I have been entered into the insurancegate program, also known as obamacare. My insurance company didn’t call it obamacare, but instead used the terms “new government regulations” “new guidelines” “policy adjustments to meet new guidelines” and well, you get the idea. What am I talking about? Let me start from the beginning.
I was opening my mail yesterday to find a letter from my insurance company, United Health Care through AARP. I am naming them out. I feel though this could apply to other policies and companies as well.
This letter was to inform me that as of January 1,2014, the following doctors were not part of my plan and I would need to see new doctors. Which doctors you ask? Oh nothing much, just my rheumatologist I have seen for ten years and the gastroenterologist I have seen for a year that found my precancerous polyp and I am to keep following up with. No biggie!! WRONG!!!!!!
As any lupus and/or autoimmune patient knows, finding a good doctor is of utmost importance in our disease journey. I had found my doctor. Shoot, in the last year I have recommended him to five others who also love him!! He is not just a good doctor, he is awesome!!! He is what most of us dream of finding in a doctor who is extremely knowledgable in autoimmune diseases! Not to mention, he is also the ONLY rheumatologist in Dayton, Ohio, where I go for my healthcare.
Now, according to the “statement” I had read to me on the phone, my insurance company tells me I have to change from my current doctor to a new doctor. They claim it is because to meet these new government guidelines they have had to pare down the doctors they will use to a small core of doctors and since my doctor didn’t make the cut, I must go elsewhere. Say what?
To further complicate matters, a friend of mine who sees the doctor I have been referred to (the replacement doctor) and who has the same insurance, has been told she has to change doctors because HER doctor isn’t covered for the same reasons. Um, what? Basically we both have to change doctors but HER doctor is MY NEW doctor while HER doctor is not on HER plan now. Clear as mud?
This has got to be the craziest scheme in the world. I’m just venting here but truth is I was told there is NOTHING I can do about it. No appeals, no overrides. Just like it or lump it. Crazy!!!
My point in this story is to you all: check and double check your own policies. Don’t get “stuck” in a catch 22. I assume many more letters will be going out. I may yet get more myself. Just be aware and be prepared. It felt like my whole world got flipped yesterday. It did. It’s nuts!!!
I began my day like any other. I woke up at ten, had breakfast and coffee, and sat in my chair to watch tv until I was fully awake. Here is where things went wrong.
I woke up at five pm. Yes, I fell asleep again. It was like I was in a coma. I would wake up briefly but couldn’t move. Like I was paralyzed. After a bit I would doze back off. Lupus brain fog. I hate it!!
So despite being back on steroids, I have slept this whole day away. I got up at five and made some soup beans and toast. I know protein is good for me. I also made another cup of coffee. My brain is still foggy. I I cannot believe it but I truly could go back to sleep again for the night. I guess for today, lupus wins. One battle for today is what lupus wins. However, I will win this war!!!
It’s funny how lupus does this.
By the way, I have a question for you all. Do any of you ever get little itchy blisters on your finger tips that burst and itch more? Just wondering.
I get so angry sometimes over a wide variety of issues. I want to talk about the idiots out there who need a two by four upside the head. You all know who I mean. We all know several of these people.
It’s the person who looks at you and tells you to suck it up. They say hurtful things implying that you are faking your pain. Shoot, sometimes they just say outright that they think you are lazy.
Idiots? Yes. However, the truth is they are to be pitied. Instead of being empathetic they think by putting you down, it makes them look better. Sadly the opposite is true. They really don’t get that by treating others badly, they are showing how sad their lives are.
I pity them. I pray for them. Most importantly, I hold back from hurting them because then I sink down to their level and feel awful. It helps me to think this, “I do not look good in prison orange” over and over until my anger cools.
It’s that wonderful time of year here in Ohio, the leaves are changing colors, the days are getting shorter, the air is crisper, high school football is in full swing and I hurt.
Every year at this time I think about moving south. Why? The weather changes hurt me. Spring and fall the most. Wild weather fluctuations accompanied with big fronts and rain are the worst. In Ohio, we have these in spring and fall. Lucky me. This fall is no different. I want to be out enjoying all the beauty that fall brings but the pain keeps me from doing as much as I would like to. The solution? I would love to move to a warmer climate.
I lived in Georgia several times and despite the mountains and cooler temperatures, my lupus didn’t hurt as bad there. I’m not sure why. I think it is because the weather there, while it does change, is not as unpredictable as here in the Ohio valley, or as we call it sinus valley. Yes it rains down there, but for reasons unknown to me, I just didn’t hurt as bad as up here.
Does that mean I would move back? If I could. My choices of where to live the remainder of my life are (in no particular order) Arizona, Texas, Kentucky, Georgia, and Tennessee. Kentucky is my favorite because my familial roots are there. I know the weather isn’t much different from Ohio but my heart wants to live there. All the others are gorgeous in their own right and I would not hurt as bad. It’s mostly a dream though because my finances say I cannot afford to not only move, but live elsewhere.
Does the weather affect you all? What hurts you the worst? Hope today is a pain free day or as pain free as it can be. I leave you with a picture of me in the backyard enjoying the hammock on a warm autumn day.
In the last week I have been experiencing oral blisters in my mouth. When they first appeared last week, I took my steroid medication (prednisone) and they disappeared. Now they are back in a new location. Naturally. This seems to be an issue right now.
Hmm, I wonder if it is being caused by stress? Ya think?!
I live in a small town. It is marginally bigger since I was a kid some 40 years ago but it is still small. It’s kind of wired to think that many of the folks running this town now are people I know or went to school with. Funny how that has happened.
Anyway, yesterday is the reason I bring all of this up. I have a lot of grandchildren, 12 in fact, and yesterday evening I got to watch our kindergartner in her first parade. It’s homecoming this week and my granddaughter is a wee cheerleader, as the peewee cheer squads are known. She and her squad are so cute! There are only four of them but they cheer their hearts out!!
As grandma, it is my duty to attend functions like this and take pictures and cheer them on. I did!! It was neat seeing other kids I “know” because of their parents being friends. A niece was in the parade too.
Small towns foster this type of fun I think better than larger ones do. Everyone does know everyone else in some way or another. If I don’t know the parents of the kids, it’s likely I know their grandparents. It’s like a big family in a way. We stick together no matter how far we roam. Here we call it Wildcat pride. We are fond of saying “Once a wildcat always a wildcat!”
It’s funny because we do tend to look out for our own, be it our kids/grand kids or someone else’s. I know growing up here that if I did something wrong, my parents usually knew before I got home! In some ways that still happens.
So, I enjoyed myself immensely last night. Here are a few pictures of our parade!
This is my daughters truck with my granddaughter in back!
These are random shots of the band and sport teams.
Hello from Ohio!! I woke up this morning and my right hand was asleep. Or so I thought. After being up for awhile I realized my neuropathy is rearing its ugly head. Great. Nothing like pain to start my day today. Plus this is my busy day. I have to go to the grocery and pay bills. I hate neuropathy. Taking my Neurontin and hoping for the best. Do you have neuropathy? What do you do to deal with it?
Hope your day is a great one!
I am always looking for good things to pass along and I saw this on the tv show,”Kentucky Life”. Amazing! So here is a nonprofit heirloom seed place to get non GMO seeds from the past. Yummy! I am getting mine for next year! Check them out and look at their story on KET’s “Kentucky Life” show!
Here is the link:
I am on hiatus from Facebook right now. However, I did do a daily “attitude of gratitude” to try to keep me focused on at least one thing I am thankful for.
I would like to challenge all of my readers to do the same. Each day stop and write down one thing you are thankful for that day. You would be surprised how much it helps your mind and heart each day!
I have done this for a year now and I have to say that while it seems a simple thing to do, there are days when it is a struggle to find much to be thankful for.
I highly recommend you give it a try! It really does work!
I thought I would share a few graphics I like. Hope your day is a good one!
This is a diary entry of mine from September 2nd, 2013 as I was forced to go shopping with my husband and his mother while recovering from surgery and a ripped abdominal muscle. I admit to being on powerful pain meds at the time.
I was writing my thoughts on how I felt. It’s just my thoughts but I felt it was worth sharing. It’s not pretty.
Here you go:
So tired of bullying because he doesn’t get his way. Most men (apparently) that love their wife, don’t bully or belittle their wife when she is physically challenged. Of course, mine obviously doesn’t love me because each day since surgery has been an ordeal because I am not meeting HIS criteria of what HE wants me to do. Today is another one of those days.
I am so stressed out and feeling alone. Talked to some friends about this yesterday. They were very supportive. The fact is most men would help their mate. I guess my poor judgment is paying me back in spades. Now sitting in the car listening to him malign me and what I say by telling his mom that HE knows that what I am saying is not what I mean. Nice to know he is all powerful and knowing and can tell exactly what I am thinking or feeling. Yeah right. If he did he would know what is really going on. However he honestly thinks HE is god. HE is always right. Even when HE admits to being wrong, HE always blames his actions on someone else. HE is NEVER wrong.
His mom keeps that belief going by catering to his every whim and despite me taking up for her when he ripped into her, whenever he does it to me, like every day, she proceeds to not only excuse his behavior, but also points out how I am to blame for it!! Fork time. I am done. This time for good.
Do you find yourself wanting certain foods at different times of the year? I sure do. Here in the fall, I find myself wanting my favorite comfort food of chili. Mine has no beans. Plus topping it with cheese and sour cream.
So, what is your favorite fall comfort food?
Well, autumn is here again and this begins the seasonal joys of pain. Why? Well for example, this week in Ohio it is going from 90-100 degree temperatures all week to Fridays high temperature being only 65. Now, this is a welcome break from the heat but when the temperatures fluctuate so wildly like that, those of us with autoimmune issues seem to feel pain and headaches from it. Also, asthma flares for me too.
So, how does the weather affect you?
I had to see my surgeon today regarding my “ripped” an muscle. After checking it out, it is now wait and watch. There may be a herniation needing surgical repair. It could be scar tissue. There are a lot of if’s. Instead of going into another surgery, I am to watch for fevers, chills, vomiting, diarrhea and pain continuing. If it continues, a ct will be ordered. Only after all of this, unless it becomes emergent, then surgery may be needed. I am thankful for this. I have not bounced back as quickly because of this whole muscle thing. I am not ready for another round of surgery.
As the title implies, I am still having issues. Actually, it’s one issue. I mentioned in a previous post, I tore my abdominal muscle after surgery. The pain persists and so I called my surgeon today. I see the doctor Thursday morning. It is my hope that this just takes time to heal and I am impatient. I will find out Thursday. Here’s hoping its that simple. I will update when I know more.
The contest has officially ended and thanks to all who shared this blog on social media!
The winner is Brittany!! I will be contacting you soon Brittany on the address where to send the book.
Thank you all for supporting this blog! Hope this finds you pain free and doing well.
Hello everyone! I must apologize for my absence but things are getting better each day!
My surgery is pretty well healed. That’s the good news. The incisions are healed and just itch now. I am still on soft foods restriction but getting around that as needed, hee hee. I know, I know, I am a non-compliant patient. That has been well documented on my behalf. The difference is that my mom and my mother-in-law have ganged up on me and are enforcing the rules for what I can eat. My mother-in-law came up from Kentucky and my mom of course, lives about three miles from me. Despite their vigilance, I have still managed to eat from the non soft food categories a few times. It’s just how I roll.
That is the plus side. I have also lost over 25 pounds since the surgery. I will take it. I hope to lose more than that but for now, I will take it. It is anticipated that I will lose much more, given that my tiny stomach has been halved, but I can deal with it. I hope the weight loss will help with my joint pain too.
Now, on to the negatives. Yes, there are negatives here. In the course of the surgery, the doctor had to cut through an abdominal muscle. It was stitched up before they closed my incisions. Well, and this is my luck, just as I was feeling better from surgery, I had a set back. I sneezed, quite unexpectedly. The result? I tore the stitches in this abdominal muscle and possibly tore the muscle itself as well. Yes, when I say I have ripped abs, I mean it literally. It is my left ab that this occurred with. So now I am literally laid up again. I have to take it easy to allow this muscle to heal. If I overdo it, I can risk more damage and prevent healing from happening. I am in an abdominal binder and hurt worse than the surgery ever did. Yup, score one for me.
Today is actually the first day since the rip that I feel improved. Of course, that could be the pain medicine talking but I am looking at it in the positive sense. I need some good things to happen.
Well, that is the long and short of it. Hope this day finds you all pain free and enjoying these last precious warm days.
Ok everyone I have an exciting giveaway. I will be sending the book, "Lupus, the First Year" by Nancy C. Hanger to the randomly selected reader who shares this blog on their Facebook, google+, Wordpress, tumbler, twitter, blogger or any other social media.
It's easy. Just copy and paste the link below and share it with your friends! Then, comment below with the word "shared" and where you shared it and you will be entered.
Well, I am one day post op from my surgery. It went well. I am hurting like the dickens but I can get out of bed by myself now so that is huge!
I got to interact with a golden retriever while here. They allow certain trained dogs to come in and comfort the patients. I have a photo at the bottom of this post.
I am really hoping to feel better each day. The doctor is giving me prednisone to keep a lupus flare at bay. Yippee. Well it’s time for more meds so I will post again soon !