Since I’ve Been Gone

While freezing my butt off on a cold winter day (today) I decided that it had been long enough since writing about my life. I had been waiting for something to happen since my life is so terribly interesting (cough cough) but then realized that in my absence on WordPress that a lot has happened. Too much to really discuss in one post. So, I suppose I will start from where I left off and see how far I make it.

The medication that the doctor had just started me on the last time I wrote definitely does not help with my fatigue, but it really does help with my pain. My average pain level has gone from a 7 (when I started going to the pain clinic) to about a 5. That is a major improvement and makes it worth taking an extra medication.

My car is still functional, although it doesn’t have my complete trust yet, especially on these really cold days. However, it does get me from point A to point B and I have roadside assistance just in case.

My niece and her daughter moved in with me for a short time (about a month). It was great having family here and getting to babysit my grandniece was so much fun! However, I misplaced my trust and got burned by it. My niece had a key to my house and I didn’t have my medications locked up. The very last thought on my mind was that I wouldn’t be able to trust her. I ended up with at least 6 percocet, 20 strattera, and about 30 tramadol missing. It breaks my heart that she would break my trust, but it hurts even more to think that she has a drug problem. I have literally watched her grow from a baby to a woman and she just isn’t the person that I thought I knew…she isn’t the same person she used to be.

To end on a positive note, I had a wonderful Christmas. I had a real tree and was able to get presents to put under it. Family came over and we celebrated for two days with way too much food. It was the best Christmas that I’ve had in years. I hope you all had a wonderful holiday as well!

Please See Me

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?

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…

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.

My Visit to the Rheumatologist

If you remember from my previous post A Couple of Normal Days, I had been given a dose of steroids that made me feel like a normal person for the first time in almost three years. The general doctor told me that he wanted me to see the rheumatologist because he thought that I might have had that reaction because of an autoimmune disorder. In the meantime, I have been using an inhaler and a nasal spray which contain corticosteroids. It has helped me to have more energy than before. It had gotten to the point where I was in bed most of the time and it was all I could do to even shower much less do things around the house.

Well, today I was able to get an appointment for the rheumatologist’s nurse practitioner for the hip injections that help my bursitis. While I was there, the doctor came in the room and I asked if he had a second to discuss something. I told him about the GP’s suspicions and he said to run all the details by the NP and she would discuss it with him. So, that is exactly what I did. I told her how I felt before the steroids and how I felt while taking them. She told me to continue to take the medications the way I am except for the Plaquinil that they had given me for inflammation. I am supposed to double the dose by taking it twice a day instead of once. In the meantime, they are going to do some more blood work. If the tests come back positive for inflammation again, she said that they would probably start me on a low dose of a medicine called Methotrexate. It was originally used as a chemotherapy drug, but in lower doses has been used to treat autoimmune disorders.

To be completely honest, the thought of taking a chemotherapy drug scares me. I am hoping and praying that my tests come back ok so that I don’t have to take it. If they don’t, however, then we will know for sure that it is some kind of autoimmune problem. If that is the case, then I suppose I will do what the doctor advises even though it scares me a bit. That is his specialty after all. I guess I was just hoping that it wouldn’t come to such drastic measures. Basically it is a quality of life issue. Before, I had no life. Now, I am able to get around better than I have in years. I will do whatever I have to do so that I don’t have to go back to that dark, lonely place that I was in before.

Weekly Update…

Well guys, this week has been a doozy. It was going pretty good until today actually.

Tuesday was physical therapy. It was much better this week than that one week that it sent me into a flare. No flare this week, just a couple of really tender trigger points in my hip area that had to be worked out. Honestly I don’t know that the trigger points were released seeing as how they’re still hurting. Of course, it could be my bursitis acting up. It may be time to pay my rheumy a visit to get injections in my hips again.

Wednesday was a sad day. It was my last visit with my psychologist seeing as how she has married and is moving to another city. I will start seeing my new therapist mid-August. I had gotten used to things with my therapist and I really hate to see her go. Even more I hate to think about having to start all over again with someone who doesn’t know me. The good thing that happened Wednesday was that the keyboard/case for my iPad came in the mail. It is a lot easier to write posts using the keyboard than using the screen of the tablet.

Thursday was supposed to be a day of rest knowing what all I had to do on Friday, but it turned out to be a bit busy as well. The screen protector that I had purchased for my iPad on Monday was already starting to peel up. So of course, I took it back to the store for a refund. Then I decided to buy one from Verizon and have them put it on for me. It was a good decision. I have never seen any screen saver (phone or tablet) not have at least one bubble until that day. The man did a beautiful job with the screen protector, told me that once it was scratched to come back and he would put one of the two remaining protectors on for me, and sold me on a glass screen protector for my iPhone. Then, I called the police station and finally found out why it was taking so long on the police report…they had “misplaced” it. So then I had to drive downtown, purchase the police report, and then take it to the rental place. Like I said, busy day for a “rest” day.

Friday was like every time I get my check. I run all across town paying things that I am unable to pay by phone. Depending on the lines that can take anywhere from 2 to 5 hours. This day took 3 hours, so not too bad. Then I went back to Verizon, bought the glass screen saver and a car holder for my iPhone, and to Target to buy a case. By the way, for those who don’t know, Target will match prices- even online. They will match Amazon’s price just as long as the product is sold and shipped by Amazon and not a third party. So I was able to get a $35 case for $22.99 thanks to Amazon’s scanning ability and Target’s competitiveness. After that I got a hankering for a new purse, so I went to Burlington and found a beautiful red leather purse and matching wallet on sale. Happy with the day’s purchases, I made my way home (aching body and all). Shortly after getting home the mailman came with my birthday package from my best friend. So now I have a set of bluetooth headphones to use when I’m driving or when I’m doing housework and want to listen to music without carrying my phone around. All in all a very good day, but completely exhausting!

Today is Saturday. I slept in late (It was about time I got some good sleep) but I still woke up utterly exhausted. I really need to go grocery shopping, but my body hurts so badly that I don’t know if I’ll be able to. Not to mention that I have dishes and laundry to do. I would really like for my day to be productive, but I just don’t know if I can. I have used my inhaler and taken a pain pill, so maybe in a little while I will have some energy and less pain so that I can go. I know that if I do I will have to use one of those electric cart things and I absolutely hate using them. But, I suppose it’s worth it to have food to eat, right?

I still haven’t heard anything from the rental place about whether or not they are going to replace the iPad. M said that he is willing to finish making payments on it, so at least I won’t have to worry about that bill anymore- whether or not they replace it. I just hate to lose all of the money that I put into it. I want it to be worth it to someone whether it’s M or my sister (who also said that she would be willing to take over payments- well who wouldn’t? There’s not that much left to pay on it!)

How was your week? Did something exciting happen or something sad? Feel free to leave a comment about how your week went.

Product Review: Axon Optics Glasses

With Axon Optics glasses

It has been a while since I won a pair of sunglasses from Axon Optics and Michael Fernandez at MigraineDiscussions.com. This company makes glasses for migraine sufferers or for anyone with a sensitivity to light such as someone who is at a computer screen all day. I can’t really say anything about the indoor glasses since mine are for the outdoors. However I do have some things to say about the ones I own.

First of all, I was surprised that for a pair of “over Rx glasses”, these are remarkably stylish. I remember when I was a kid and they made the lenses that fit over the prescription eyeglasses and flipped up…not so cool. These, however, are just the right size to fit over my glasses and hide them from view. It looks like I simply have on a pair of sunglasses. So as far as style goes, it’s a thumbs up. 👍

The frames are lightweight. I mentioned in another post how a previous pair of sunglasses I had made the bridge of my nose hurt after about an hour. I can wear these glasses almost all day (or at least a few hours) before they start to bother me. However, when they do, a simple adjustment in the placement of my Rx glasses and I’m good for another little while. So, for comfort…another thumbs up. 👍

Now, as far as doing what they claim to do…helping with migraines: Since I received the glasses (it has been about 3 weeks) I have worn them every day when going outside. In that time I usually would have taken my migraine medication (Maxalt) to keep a migraine at bay at least 5 times, sometimes more. I have only taken one dose of Maxalt since receiving these glasses and it was taken at the first sign of a headache to prevent it from becoming a full-blown migraine. It is possible that it wouldn’t have developed into one, but like they say- better safe than sorry. By providing full coverage from the sun even on the sides (unlike most sunglasses that allow the light to come in from the sides and sometimes the top and bottom of the lenses) the use of these glasses have kept me from having to take as much medication as before. Therefore, I have to give it another thumbs up. 👍

Since I haven’t had a full-blown migraine, I have not been able to use these glasses yet during the light-sensitivity part of the headache. However, because of the coverage, I believe that it would be safe to assume that they would be very helpful when having to be in a well-lit room during a headache. I think that they would provide relief in that situation as well. In this area, I have to reserve the thumbs up for when this happens. I will keep you guys posted on that front.

I am so very grateful to Michael and Axon Optics for providing me with these great sunglasses. They have met all my needs so far and may help any of you who suffer from migraines or other types of light-sensitivity. If you would like more information you can go to the Axon Optics website here or contact Michael Fernandez at MigraineDiscussions@gmail.com.

Another Great Week!

This past week has been a hard one, but a great one! It was hard because of physical therapy. This time, even though I felt ok immediately after PT, the soreness of the next day has lasted me most of the week. I suppose that’s what I get for telling my physical therapist that the week before was a breeze…I won’t make that mistake again. The manual work she did made it feel like I had done a two-hour workout, which anyone with a chronic illness knows is a no-no. It brought on a flare that I am still dealing with. I am hoping that it will get better soon.

It was a great week because I celebrated my birthday a month early. How did I celebrate, you might ask. Well, I have been having problems with my cellphone which was an Android. Being that I am an Apple lover and have a MacBook laptop and an iPad, and previously had an iPhone until I washed it in the washing machine (oh yeah- I did that) the Android was truly a let-down. I was unable to sync my calendars between my other devices and my cellphone, I was uncomfortable with the operating system, it had no memory (well, it had 2GB which is basically nothing), and it kept rejecting my SD card. So, even though I have been trying to stay away from a contracted phone service, I broke down and signed up for a two-year contract with Verizon and got the new iPhone 5s. The best part? The normally $199 phone was 50% off, so I ended up paying only $99!!!

Image from http://www.techradar.com

I am in love with my new cellphone! I hadn’t realized how much I missed the iPhone until we synced everything up (simply by signing into my iCloud account) and all of my contacts, appointments, and apps were automatically part of my new phone. YAY! This will make my life so much easier! Plus, the phone service I had before didn’t work where my sister lives. I would have to make calls using her WiFi. Verizon’s service so far has been outstanding here where I live and where my sister lives (thanks to a trip I took yesterday)…everywhere except for in my house. That is the only downside I have found so far. Trying to have a conversation while inside is a bit of a chore seeing as how I only have one bar and calls keep getting dropped. Oh well- it is SO VERY worth it to have a phone I don’t hate.

So, all-in-all a great week…another HAPPY week. I am loving this “happy” trend I have going on. Here’s to wishing for many more great weeks to come!

One Year Anniversary

Today is my one year anniversary with WordPress…and what a year it has been! I started this blog as a way to vent about my medical issues and hopefully help other chronic pain patients at the same time. I believe that I have accomplished what I set out to do. I wrote a lot more towards the beginning of my time with WordPress, but I just had so much to say back then. There was a lot of catching everyone up on my issues and informing you guys about adhesions. Since doing that, my writing has slowed down quite a bit, but most of you have stuck it out with me. Also, welcome to all of my new followers. I have met some truly amazing people and made some very good friends…all in all a complete success if I do say so myself 🙂

This week has been great. I am still feeling better from the increase in the corticosteroids. Not quite as well as I did those first three days, but much better than I have these past few years. Just to show you how much better I have been feeling, I will use cleaning as an example. Since my adhesion symptoms worsened a few years ago (but especially since the start of the Fibro fatigue), mopping and vacuuming have been pretty much impossible. I could sweep on occasion, but definitely not as much as one should…especially being a fur-parent. The other day I found a small, lightweight vacuum cleaner and a steam mop (both for $30 if you can believe that!) and I have been able to vacuum the carpet in my bedroom. Today I vacuumed the hardwood floors in the living room/dining room and steam mopped them! I am exhausted at the moment, but it feels so good to have been able to get it done. The steam mop ended up being heavier than I expected (harder to push and pull) but I was still able to get it done. For the first time in a long time I feel as if I have accomplished something big…and I suppose I have.

Physical therapy started this week. I will be going once a week to a new physical therapist. So far, I think that she and I will work a lot better together than the therapist I used after mine moved to a new clinic. She is more “hands on” like the first therapist was and even uses a technique I’ve never seen before. I believe that I might start to see results soon, and that’s great since the second therapist I used never really helped much at all. She would just watch me do my “at home” exercises…what’s the point in that?

The last past of my great week was winning a contest! Michael Fernandez at MigraineDiscussions.com had a contest in June for Migraine Awareness Month. There were two grand prizes for two winners…a pair of Axon Optics sunglasses. Axon Optics specializes in glasses for migraine sufferers. I entered the contest with a post I wrote for Migraine Awareness Month entitled My Migraine Story. Michael announced the two grand prize winners with a You Tube video and it shocked me to hear him say my name! He had two pairs to give away. One was a pair of “cats eye” women’s sunglasses and the other was a unisex pair that can be worn over prescription eyeglasses. Guess which one I won…yes, I won the pair that can be worn over my own eyeglasses! They came in the mail on Friday and I wore them all day yesterday as I was doing a bit of running around (the all day long kind of running around). I was amazed at how lightweight they were. They didn’t make the bridge of my nose start to hurt until the afternoon. The pair I was wearing before would start to hurt after only about an hour at which point I would have to take them off. These new ones I was able to simply reposition and keep going. I will write a review of them after I’ve had a few weeks to wear them, but so far so good! Here are pictures of me with and without the new sunglasses:

Without Axon Optics

With Axon Optics

So, I rounded out a not-so-great year with a wonderful week! I will try to get back to writing more often again. I just wanted to thank all of my followers, new and old, who have stuck by me throughout this year and more often than not have been my support when I had none. Thank you for listening to my rants, my tears, and my triumphs, and for being my shoulder to lean on. Here’s to another year of blogging and many more new friends to be made!

A Letter to Patients With Chronic Disease

A Letter to Patients With Chronic Disease.

These are good things for all of us as chronic illness patients to remember. Please have a read…

Also, I would like to thank Zyp for always finding great articles.