A Quick Update

I know that it’s been a long time since I’ve written, so I figured a quick update was in order.

Let’s see…first of all, I FINALLY got my car back. The first time it went to the shop with a busted radiator and warped head (gasket? The top part of the motor, anyway). I got the car back and the very next day I was stranded on the side of the road again. This time, it was a broken crank shaft. When I got the car back earlier this month I was scared to death that it was going to break down again. I was even scared to go above 60 mph. The other day, however, I had a lot of running around to do, and was all over this city. Now I have a renewed faith that my car really is fixed. I still have to take it to my sister’s house (she lives an hour away) and if I make it back and forth then I’ll know that it’s really fixed. The only thing it needs now is a new battery and I should be getting that tomorrow :) .

Health-wise, things are a little better. My GP started me on a new medication that is supposed to help with my fatigue. So far, it has helped some with my pain (which is really good!) but no so much with the fatigue. The day I had so much running around to do, my “spoons” did last longer than usual, but the fatigue is still keeping me from being able to clean my house. I was really looking forward to that part, because my house needs a good cleaning. I am able to do the basics…wash dishes and wash clothes, but that is about it. I would love to have the energy to de-clutter and give the place a good once over i.e. sweep, mop, dust, ect. I’m just not there yet. The doctor said it might take a couple of weeks for the medicine to get into my bloodstream, and it’s been two weeks, so I think I’m going to call and see if there is any way we can increase the dose. Luckily this medicine is not an amphetamine. I was (am) afraid of that kind of medicine. The one I’m taking is supposed to work the same way as the amphetamines, but without being one. I don’t know the science behind that, but right now I’m just going with it. Like I said, it has helped some with the pain so I think a little tinkering with the dose and it just might work!

Also, the GP was concerned with the fact that I broke my foot from a simple fall, so he ordered a DEXA scan (bone density test). Luckily I don’t have osteoporosis, but I do have bone loss which is called osteopenia. It means that I am at a high risk for fractures and have to be careful not to fall. I am now taking calcium citrate in addition to the high levels of vitamin D, so hopefully I can keep from losing anymore bone mass.

I have had some trouble with brain fog lately. Not severe, but bothersome. My mood has been ok and my anxiety level is down, which is always good. Now that I have my car back I am looking forward to going back to the physical therapist because she was really starting to help. I am having difficulties with my new psychologist. If you remember, the one I was seeing moved out of town and I was refered to a new one. She and I just aren’t hitting it off very well. I have been to two sessions with her and I have left feeling worse than when I arrived. I just received an email back from my previous therapist with the names of two other ones that I can try. I have already checked with insurance to make sure that they are covered and will be making an appointment with one of them soon. I hope that she will be better than the current one.

So, that is about all of my new news. I will try to write more frequently. There are days that as long as I am able to wake up and breathe, that is good enough for me. Hopefully as the medicine begins to work its “magic” and my fatigue wears off a little, I will be more inclined to write a post or two. Maybe even do a little research and write an informative one like I did in the past. If not, well then I hope you don’t mind simply reading about my life with fibromyalgia and adhesions. After all, that is what this blog is all about…letting you see what life is like for me with my diseases.

Why Do You Take Pain Killers?

Originally posted on EDS Info (Ehlers-Danlos Syndrome):

“Why Do You Take Pain Killers?” by Kitty Kavenaugh

I found this marvelous essay by Kitty Kavenaugh, which luckily encourages sharing it, so here it is:

Most of my friends know that I take oxycodone (Targin, the slow-release version, and then quick-release Oxynorm for break-through pain). They know that I need it in order to control my pain and they know that using it doesn’t make me a drug addict. They get that there’s a difference.

But every now and then, a relatively new friend will make some direct or indirect comment about how I shouldn’t be taking it. Their body language changes. They become tense across the shoulders and lean back a little, suddenly sceptical of my character. After several such encounters over the past few weeks, I feel compelled to explain why I take pain medication, what it means for me and to dispel some myths about opioids…

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Your Pain is Your Fault: What Women Are Told by Their Doctors

joynpain2:

Very interesting results from this survey. Click the top link to read the complete article and the bottom link to see the survey answer percentages.

Originally posted on EDS Info (Ehlers-Danlos Syndrome):

Your Pain is Your Fault: What Women Are Told by Their Doctors – National Pain Report

“There’s nothing wrong with you.” “Your only problem is that you’re fat and lazy.” “You’re too pretty to be sick!” “You brought this on yourself. Your pain is your fault.” These are some of the surprising, disturbing and bizarre things that women were told by their doctors, according to an online survey of over 2,400 women in chronic pain conducted by National Pain Report.

Three out of four women said they were told at least once by a doctor that they’d have to learn to live with their pain. Over half said a doctor had told them they didn’t know what was wrong with them.

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You Know You’re a Spoonie When: fun list

joynpain2:

This post actually made me laugh out loud. I hope you enjoy it as much as I did.

Originally posted on aBodyofHope:

I’m not Jeff Foxworthy but some things about being health impaired are so ridiculous, we might as well try to laugh. Here are a few I thought of along with some additions from my Spoonie friends. Please share yours in the comments section!

10,000 Spoons Poster

10,000 Spoons Poster

You Know You’re a Spoonie When:

-You have more cute socks and pajamas than sexy lingerie’ and heels.

-You are on a first name basis with all of the local pharmacists.

-Your family uses YOU as their excuse for getting out of things they don’t want to do with other people.

-If a stranger comes to your front door, you just hide until they go away.

-You have more salts in your bathroom than the DMV road crews in the winter.

-Your spouse/partner fills your meds for you as a romantic gesture of his/her affection (goodbye flowers!).

-You have become mysteriously artsy/crafty over time…

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Please See Me

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Why do you see what you think you see?
When all I want is for you to see me.

Feeling so alone when you’re right next to me
That’s just wrong…don’t you agree?

There are people in this world who really deal with addiction
Why group me with them based on a prescription?

Do I really look like an addict to you?
How can you possibly believe this to be true?

I am very responsible with these meds that I don’t even want to take,
But every single argument is based on judgements you have no right to even make.

To you I am nothing but a lazy bum
To me I am strong to have carried this pain and sickness for so long.

Why is it that you can’t see
How hard it is just to be me?

Anger

Anger is one hell of a monster. It will eat you alive if you let it. Right now, I am allowing the feeling to be…just be. I’m not acting on it, I’m not crying (which is what I usually do when I am as mad as I am right now). I’m sort of proud of myself.

Today I had an appointment with my new psychologist. The appointment was at 1:00 pm.  Since I had to take the rental car back this morning, I made an appointment with my insurance company’s transportation people to take me to see the doctor today (my insurance company provides 10 free round-trip rides to doctors appointments per year). They were supposed to pick me up at 12:00 for the 1:00 appt. At 12:30 I called to find out what was going on and they told me that the driver would be here any minute now.

The driver showed up at 12:47 allowing only 8 minutes to get to my appt. It usually takes 30 minutes for me to drive there myself. To make matters worse, there was another man that she had picked up who also had an appt. at 1:00. Guess who got dropped of first…that’s right…the man.  I mentioned that it was a new patient visit and that I should probably call to let them know that I was going to be late. The driver told me not to worry about it that she would have someone call for me and explain the situation.

I arrived at the doctors office at 1:30. I go in and was told that not only did they not get a call from the transportation company, but that since new patient visits are scheduled an hour and I was 30 minutes late that they would be unable to see me. I was MAD! Very. Very. Mad.  I called the transportation company and asked to speak to a supervisor. I explained to them what had happened and that thanks to them I had been waiting on them and walking around on a broken foot for nothing. That thanks to them the doctor had refused to see me. I also told them that I had no intention of waiting 3 hours for someone to decide to pick me up and to please send someone ASAP.  The supervisor “fixed” things by offering me a free transport after I reach my max for the year. However I have lost faith in their company and hopefully won’t have to use their services again. I have cancelled my appointments for next week to make sure that I have time to get my car back from the shop before having to deal with doctors and therapists again.

Needless to say that today I am REALLY missing my car. I sure hope that I get it back next week. Luckily the gentleman who came to pick me up was quite the character and made me forget about my anger at least for the ride home. His easy banter and conversation made me feel much better. At least for now my anger has subsided and is just a little whisper in my ear. Much better than when I began writing this post while waiting for them to pick me up.

I Miss My Car (Sort Of)

 

With all the craziness of breaking my foot I forgot to tell you guys about my car. On Tuesday I went to physical therapy. Afterwards I stopped by the local Sprint store to exchange an accessory, and then I headed home.

Now, I noticed that my air wasn’t cold, but since I was smoking at the time, I assumed it was because it was an oven outside and I had the window rolled part of the way down. Once I was done, and the air still wasn’t cold, it finally occurred to me to look at the temperature gauge. It was all the way at the top! I had a hard time pulling over because of an eighteen wheeler who wouldn’t let me over, but I finally got stopped on the side of the highway. My car was smoking! I was so scared that it was going to catch on fire or something, but luckily it didn’t.

After about 20 minutes on the side of the road the car finally quit smoking. Another 15-20 minutes later M showed up with some coolant for the car (I had let my AAA lapse…I know…my bad).  Even with the coolant, the car still wouldn’t crank up. So, we had to find a mechanic to tow the car.

The next day M talks to the mechanic and tells me that the radiator blew up (I don’t know if that’s really a thing, but let’s just go with it) and that since I had driven it without water in it, that it had messed up the head of the engine. GREAT! The grand total to fix my car: $1,000. It really sucks, but it’s a lot less than buying a new car.

In the meantime, M rented me a car to use. It has been great being able to drive a new (model year) car! Unfortunately, my week is up tomorrow and I will have to take it back. Then I will be without a car until at least Friday. That will suck, but hey, it happens. At least it’s being worked on even as I write this post.

At least by having the rental car I was able to go to my birthday party on Saturday. My grandniece’s birthday was the 14th and mine was the 11th, so my niece decided to throw a party for both of us. It was so much fun! My 2yr old grandniece is an angel and I was honored to celebrate with her. It was the first birthday party that I’ve had in a very long time…I don’t even remember the last time I had a party. But we had a blast! Here are some pictures from the party…

 

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Your Opinion Please

I am writing this post for two reasons: 1) M sort of told me to and 2) I am interested in your input.

I suffer from Adhesions which is internal scar tissue that basically “glues” your internal organs together. Any sort of movement including bending, reaching, sitting, even digesting my food when I eat (because my intestines are glued to various organs and to my abdominal wall) is painful. I also suffer from Fibromyalgia, a disorder of the nervous system which affects many things. It causes widespread muscle pain and weakness, sensitivity to light and sound, brain fog (fibro fog- easily forgetting things you would normally remember or not being able to find the right word when conversing). I also have hypothyroidism, hypoparathyroidism, pre-diabetes, anxiety, depression, and migraines. I take a good bit of medicine for these disorders, but lets skip to the one which is obviously a problem in my relationship…the pain medication.

Although I take muscle relaxers for my muscle aches and pains, and gabapentin for my pain, let’s talk about the opioid medications for a minute, also known as narcotics. When you see a pain specialist, their goal is to put you on the lowest dosage possible that still controls the pain to a normal, functioning level. They want you to still be able to feel pain for the same reason…so that you will know if something is wrong with your body. Right now I am using the Fentanyl patch (25 mg) for around the clock pain relief and Percocet (10 mg) 3 times a day for break-through pain. I take these medications exactly as prescribed except for some days I don’t need all three doses of Percocet so I only take two. In other words SOMETIMES I TAKE LESS THAN WHAT HE PRESCRIBES.

You might be thinking “what is the reason for all this explanation?” The reason is that I now know why M told me that the pain is all in my head yesterday morning. Apparently, he thinks that I am making up the pain in order to get more pain medicine. Like I of all people would make up pain. I take pain very seriously. Now, did I ask the pain management doctor for something else to take for about a week? Yes. But first of all understand that 1) I didn’t ask for pain medication from another doctor. I am running it all through the one doctor that handles my pain management; and 2) He gave me a small dose of Norco (a medicine that is weaker than what I am taking now) twice a day for seven days. Apparently he saw the need for added pain relief. Trust me, if he hadn’t, he would NOT have prescribed the Norco. Just ask any chronic pain patient who has had difficulties getting good pain relief. The doctor understands that this is not part of my normal, everyday pain and that also, to be frank, it is a hell of a place to break a bone. I mean, not only is it broken, but I have to walk on it meaning I put my whole body’s weight on it. OUCH!

So, here comes question and answer time…Do you think that it was ok to have asked for one week’s worth of additional medication or was I wrong and therefore I am a “drug addict” as M says? I especially want to hear from those of you who deal with chronic pain on a daily basis, but, I also want to hear from those who do not…in other words, anyone reading this is game to answer the poll below. Feel free to leave comments as well. All comments are welcome.

 

It’s All In My Head…

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Yesterday morning, my left foot was half-asleep. I stood up anyway and started to walk off, but my left foot decided that it didn’t want to move. I ended up falling and breaking my foot. At first, I thought that I had just sprained it, or pulled something in it, but after an excruciating morning, I finally called the doctor to see if they could fit me in. By then my foot was swollen, red, black, and blue.

The doctor took X-rays and determined that I had broken the fifth metatarsal…right in the middle of my foot. He sent me to the first orthopedist he could find that could see me the same day (who just happened to be the orthopedist who just recently had done surgery on the doctor’s shoulder…talk about a good reference!). I went early to the orthopedist because I had never been there before and I knew there would be paperwork to fill out and just like most chronically ill patients, paperwork is like writing a book. It took me about an hour to fill everything out.

The orthopedist took a look at the copy of the x-ray from the other doctor and suggested that I wear a boot for a couple of months. The only time I can take it off is when I shower. I suppose because of the swelling, my foot started hurting worse after the boot was on for a while. I have to go back to the ortho in two weeks to have my foot x-rayed again to make sure that it is healing.

Here is my problem…the pain medication that I am on was taking care of my everyday adhesion and fibro pain, but it is not touching the pain I feel in my foot. I am going to talk to my pain management doctor today to see if I can get something stronger for a week or so. This morning I mentioned that my foot really hurts and M says to me “It’s all in your head, Joy”. REALLY!?! I even asked him “did you really just say that to me?” and his response was “well my back hurts everyday. You are choosing to feel the pain.” REALLY!?! So apparently the pain in my foot is all in my head. It has nothing to do with the fact that I have a broken bone and that I am having to walk around on said broken bone.

One of the worst things that you can ever say to a person in pain is that it is all in their heads. What we need to hear is that you believe us. I mean, of all the hateful, inconsiderate things to say! I am angry right now. Very angry. He is not doing a good job of making up for his disregard of my birthday. Once again, I am seriously doubting if this is a relationship that is worth pursuing.

Happy Birthday to Me :)

Image credit: http://birthdayb.com

Image credit: http://birthdayb.com

Today was my birthday. This year, for once, it wasn’t just another day. I mean, it was because I still went to an eye doctor’s appointment…but it wasn’t because I felt that today was what it’s supposed to be…a celebration of my life.

M has never really celebrated his birthday. He says he doesn’t see the point. I get it. If it wasn’t a big deal growing up or just isn’t a big deal to you, then ok. That doesn’t mean that it’s not a big deal to other people. I respect his wishes and let his birthday be just another day (after the first couple of years when I made him a cake and I could tell it bothered him). However I have made it clear to him that I feel your birthday should be a special day. It should be a celebration of the fact that you’re alive and ANY kind of small gesture can symbolize that.

So, what did I get from him for my birthday today? A single rose? A 99 cent birthday card? Nope. I got NADA except for a “Oh yeah, Happy Birthday” when I woke up. I mean, the fact that I was given life should mean more to him than that, right? I’m not asking for an expensive gift. I truly don’t want an expensive gift. But I would like some gesture that my life is worth something. This has gone on like this for as long as we’ve been together and once again has me questioning if I truly mean anything to him.

My best friend is a woman I met around a year ago right here on WordPress. We have become very close. I can tell her anything and she can tell me anything. We Skype each other just as we are, which is usually lounging in bed in our pajamas because we don’t have the energy to do any different. This woman who I have known for less than a year sent me a gift package today. She made sure that it would be delivered to me on my birthday. It’s not about the gift…which happened to be a card, a beautiful journal, a password book, and a magnet…but about all the thought that went behind her putting it together and sending it.

So the way I see it, I mean more to this woman than I do to a man who has been part of my life for almost seven years. How messed up is that? Now, I know this sounds like I didn’t have a great birthday, but despite M’s lack of caring, this was a totally AWESOME birthday! The gift box sent to me by my best friend meant the world to me. We had our “Birthday Skype” and then she texted me and told me how much I meant to her and how happy she was to have me in her life. That in itself was enough to make it a great day! It almost made me cry to think that I mean that much to one person, and made it even more special because she means that much to me too. She has gotten me through some really tough times this past year when I might have just gone crazy without her.

Therefore, I dedicate this post to my best friend who made this birthday the best I’ve had in years. I am grateful and blessed to have such a wonderful friend in my life. She is more than a friend. She is family.