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.

I’m Back!

I suppose it’s time for me to write a new post. I know that it has been a while and that many of you have been worried about me. I am truly sorry for any of you who have worried. My life…mostly my personal life…has been a wreck for a while now. For that reason I needed some time away from blogging to think about things and to process what I’ve been through. I am very sorry, but I still am not ready to touch on that subject in any more detail than I already have.

Health-wise I suppose I have been doing ok. The emotional stress that I have been through has been challenging and has of course taken somewhat of a toll on my physical well-being. However, I suppose that all in all I am doing well. I stopped taking the Lyrica and I am now taking a medication called Gralise which is an extended release version of gabapentin. At first I was worried about side effects since many of you have had trouble taking gabapentin, but so far I have been doing well with it. It is helping much more than the Lyrica and after a month I still haven’t noticed any side effects. I have however been having a lot of trouble with my teeth. I went undiagnosed for a very long time with hypoparathyroidism which broken down in simple terms is an extreme deficiency of Vitamin D. That deficiency causes the body to actually take calcium from the teeth and bones for use elsewhere. I have been on a huge dose of Vitamin D which has helped to regulate the parathyroid gland, but since it went undiagnosed for so long my teeth have really taken a beating.  I have several teeth that have broken off at the gum line and others that are on their way to doing the same.  Although I have medical insurance, I don’t have dental insurance.  So, getting my teeth taken out and dentures made (which makes me sick to have to do at my age) just isn’t on the table right now. The cost is very high and I have more things that I need to worry about right now. The problem with that is that I am in extreme pain from the exposed nerves in my mouth.

I have an appointment with pain management today and I will hopefully be able to explain all of this to them. Hopefully together we can come up with some plan to manage the pain until I can save up the money to have the dental work done.  It’s strange that my mouth hurts more right now than the pain from the adhesions and/or fibro.  I will try to keep writing and let you all know how everything goes, but I am still not ready to write every day.  I do however promise to do my best to not only get back  to writing, but to go back and read everyone’s posts that I have missed out on. I still have them all in my inbox just waiting to be read.  You have all been so supportive of me since I started this blog and I am sorry that I haven’t been around to be equally supportive to all of you.

Thank God!

Image credit: http://agilemindstorm.com

Literally! I was finally able to go to the pain management doctor yesterday, just in time to avoid going through withdrawals. (See post Sitting ’round the Kitchen Table 2) So, here’s how it went:

ALDOT (Alabama Department of Transportation) finally got the roads and highways cleared of the abandoned cars from the snow and ice from Tuesday (my appointment day). The roads were sanded to help with the ice (yes, they use sand instead of salt. Why? Don’t ask me!) and the staff at the doctors office were able to make it in. I called shortly after 9:00 am to see if they were open, but the message on the machine said that they were still closed because of the weather. I started panicking again because I was completely out of pain pills and my patch was supposed to be changed today (Friday). Around 1:30pm I sat crocheting trying to calm my nerves and the idea popped into my head to call the doctors office again. I was convinced that they wouldn’t open clinic back up until today and then not be able to get me in because of how many patients they had missed. However, I had this URGE to call, so I picked up the phone and dialed (ok, that’s a lie. Who dials anymore? I pushed “call” on their contact page in my phone…doesn’t everyone?). To my surprise, the “this office is closed due to extreme weather conditions” message was gone and it gave me the option to speak with the receptionist. I was thinking “this can’t be…it’s a joke, right?” but I was put on hold and less than 30 seconds later a receptionist answered the phone. The first words out of my mouth were “Thank God you guys are open!” I proceeded to explain that it was impossible for me to make it to my appointment on Tuesday because of the roads being blocked by wrecks and abandoned cars and how I was completely out of my medicine. I truly expected to be told that they wouldn’t be able to get me in until next week, but a few seconds later, the lady asked me if I could come in that afternoon. Hell yeah!

Actually, I said “absolutely” and she gave me an appointment for 3:30 pm. I was ecstatic. After so much worry and anxiety about not being able to get in and having to go through withdrawals, it was definitely good news. I threw my hair up in a ponytail, got dressed, and ran slowly made my way out the door…hey, there’s still ice around here. I made it safely to the doctors office where I was seen in record time. I told the nurse practitioner about how scared I was and she told me that they would always get me in and that I didn’t ever have to worry about going through withdrawals…not because of something like this…and when the time comes and I’m ready to stop taking the medication, then they will wean me off in a safe way. It made me feel better knowing that they aim to prevent it as much as I’m scared of it.

The visit went well. I am staying on the same dose of medication since it has been helping and has finally gotten me out of bed! We discussed nerve blocks again. There is only one nerve block left that they can try. I have been debating this one for a while now, but finally agreed to go for it. Who knows, it may be the one to work. That is assuming insurance will pay for it. So, I figure if it’s meant for me to have the nerve block then it will be approved by insurance and if not, then it won’t. I am totally leaving it in God’s hands right now since he “spoke” to me yesterday. For the first time in a very long time I don’t feel as though He has abandoned me. I’ve always known he hadn’t, but honestly sometimes I felt like he had. Well, yesterday he made up for it. Oh, and the NP gave me the number to a place that does “the ROLF method” or visceral manipulation (I think they’re the same, but I need to look it up and check in case any of you have questions about it). This was very exciting because I have looked into various “alternative” treatments and this seems to be the best suited for my ailments. I still have to check with insurance, but I don’t believe that it will be covered. I’m hoping and praying that the treatments aren’t that expensive because I would love to be able to try it to see if it actually helps. The thing is, I didn’t even know there was anyone in this area who did this type of manual myofacial manipulation so it is quite exciting to know that there is someone locally.

I got out of the doctors office in record time and made it to the pharmacy without incident. I got my medicines refilled and made it back home safely. I truly thank God for his help today and for finding a way to take care of my needs.

Sitting ’round the Kitchen Table 2

Image credit: eBay.com

This week has definitely had it’s ups and downs. The ups were that A) I’m doing better on this new medicine B) M and I decided to work things out, and C) I bought a chromecast which is really cool. Now, the long list of downs. First of all I have been spotting this week. One day spots, then two days without. Two days spots, then one without. The last time this happened, I had a polyp or two on my uterus. I’m praying that this is not the case this time because I really don’t want to go through another surgery right now. I’m hoping that it’s one of two things. 1) Not taking my BC pills at the same time each morning (it only varies by an hour or so, so that shouldn’t be it) or 2) not doing my stretches like I should. These were the two suggestions given to me by ladies in my adhesions group on Facebook. So besides the menstruation-like pains and the severe bloating, my week was pretty good until today.

Image credit: http://briansroom.com

M and I had a long talk and we were trying to work things out. While this made me very nervous, it strangely settled my nerves at the same time. He had a list of rules and he knew that any breach in those rules will put us back where we were before. Today was a rough day. I had an appointment at pain management. They called to say they had a lot of cancellations and did I want to go in early. Sure. It was cold, snowing, and I wanted to get back home before it got any colder. Well, what would normally be a 30 minute drive took 3 hours. Every time we chose a road, it was blocked because of a wreck. So we would go another way just to find it was blocked. We tried four different routes before M started to loose it. I decided that it must be the stress of driving on very icy roads. We finally gave up and came back home. My nerves were shot. I took my medicines and a nerve pill and then decided that I would crochet to finish calming myself down. Since it was 7:00 pm, it was too dark for me to see with just the lamp on my bedside table. I asked him to turn the light on because he was closest to it. He conveniently ignored my request. When I asked again, he blew up. Same as old times. He said that he was going back to “his” room where I wouldn’t ask for the light to be on all f*%$ing night long (it was only 7:00!!!) that he guessed that was what I wanted anyway because I am happier with my cigarettes and my drugs. Whoa! Where did that come from? So, once again, I am just a drug addict according to him. I am so very tired of being insulted. I’m done. If someone in his family is reading this, I’m sorry, but I have put up with as much of his self-centered, insulting, bullshit as I can take. I’m done.

I had bought a Chromecast. Since all I have is a digital antenna in order to save money on cable, this Chromecast is awesome because all the cool stuff I can watch on my laptop or tablet can now be watched on the big screen. Well, he decided to take the tv with him when he left the room. So much for my new toy.

You know, when I started writing this post yesterday it was full of good news. Positive things. However, in one split second, all of that has changed. I had to erase most of what I had written to tell you guys about what’s going on now. My good news about M is bullshit now, I can no longer watch the chromecast I bought because I don’t have another TV, and I am so upset that I am physically shaking. Oh, and the icing on the cake is that I don’t know when I will be able to get another appointment with my pain specialist. Since they are only allowed to write the script for a 30 day supply and those 30 days are over, and because like usual no one answers the phone there, I have no idea when I will be able to refill my pain meds. So, now withdrawal…the one thing that scares the shit out of me…is most probably imminent. I need a friend so bad right now. Of course, I know that there is nothing that can be done or said to change anything that has happened. It just hurts so bad – I hurt so bad – physically and emotionally. It’s my own fault for getting my hopes up again on a sorry SOB (no offense to his mother because I love her) who doesn’t deserve my tears. That doesn’t make them flow any slower. I so wanted to write a positive post for a change, but I promised you guys I would be real, so here it is. My real life for all the world to see. I guess I should feel ashamed for “airing my dirty laundry” publicly, but I only have you guys who care about me. I guess that’s it. Off for a good cry now and to try to figure out what was so bad about the freaking light being on. If it was 2:00am I could understand. But 7:00pm…really?

Image credit: http://we heartit.com

I Hate My Life Sometimes

Image credit: http://briansroom.com

I hate my life sometimes. Today is one of those days. This morning the alarm on my iPad goes off to let me know that it is time for my pain medication. I open the drawer to retrieve it and…BAM! It is not there. Panic mode set in and a million thoughts went through my head:

• Did I move it?
• Did someone steal it?
  

  Image credit: http://drgenecobb.com

• Where would I have moved it to?
• Why would I have moved it?
• Was someone in the house?
• I haven’t had any visitors.
• Did someone break in?
• I just knew I should have purchased a safe.
• Why haven’t I priced small safes?
• This can not be happening?
• What will I tell my doctor?
• Will he believe me?
• Will he replace it?
• There’s no way he would replace it.
• What am I going to do for the next week without any pain medication?
• I will be completely bed-bound. Worse than I am now.

I proceed to go on a wild goose chase looking for my pain medication. I re-checked the drawer. I pulled the drawer completely out to look to see if it had fallen behind. I checked the other drawer (meaning I pulled every bit of junk out of it – and there’s a lot of junk!) to make sure it wasn’t there.  I looked under the bed. I looked on top of the bed. I looked in my crochet bag. I sat down and cried. Then I had the strangest thought. Did I throw the box away? I checked the trash in my room, but I had taken it out the day before. So out I go outside in the cold (without a jacket because like I said, I’m panicking) to bring in the trash bag from outside. I cut open the bag and found the smaller bag from my bedroom.  I cut it open and began pulling things out. Finally, I found a box. I’m thinking, please God let this be it.  Luckily, it was.

I bet you’re thinking “well, if you found your meds, then what’s the problem?”  Well, the problem is that life shouldn’t be this way.  Not for a 32 year young woman. First of all, I shouldn’t have had the brain fog that would allow me to throw almost a whole box of medication away. Second, I shouldn’t have to panic and worry about the immense suffering  that I would go through without my medicines. That one thought alone scared the shit out of me. I’ve been on medication for a long time and it seems my pain was just starting to rear it’s ugly head when I started taking it.  The one time that I forgot to take any of my daily medications was because of a partial seizure. It’s easy to forget medicines at a time like that because with partial seizures you don’t feel pain. When I finally came out of it, the whole day had passed and it was around 5 or 6 in the evening. I had missed at least two if not three doses of my medicines. When the sensation of pain finally hit me, I was miserable. Actually, miserable does not come close to describing what I felt. So the thought this morning of going back to that kind of pain truly scared the shit out of me.

I am just starting to calm down a little thanks to a dose of Ativan. My thoughts now are in pricing a small safe in case a visitor or a thief decides to “borrow” some of my medications. Of course I know that’s not what caused the panic this morning, but there is absolutely nothing I can do about the brain fog making me do stupid stuff. I will, however, try to be more aware of what is going on around me. I mean, I go into my medicine drawer four times a day. I should have noticed before today that the box was no longer in there.

I hate feeling this way. I hate the fear. I hate the fact that I NEED this type of medication. I’m sure my day will get better, but for now, I am throughly freaked out.

 

What do you do to protect your controlled substances? Do you have a safe? If not, do you ever think that you might need one?  How does it make you feel to have to take this type of medication? Do you ever think about what your life would be like without it?

Related articles

• A Pained Life: Medication Jeopardy
• My Story: Walgreens is Ruining My Life
• Partial Seizures: Partially as bad?

 

Sitting ’round The Kitchen Table

Image credit: eBay.com

 

I was reading some of my older posts yesterday and realized that the way I write has changed. The change wasn’t intentional. Instead I guess it just goes to show how you evolve with time. I suppose another reason that I don’t write as many “what I’ve been up to” posts is that since I have made so many good friends here, I have been discussing these day-to-day things with them. The blog was originally utilized as an ad hoc support system (it still is- I love all you guys) a way of getting all of those thoughts and feelings out that you would tell a friend sitting at the kitchen table over coffee or tea. I don’t have any doctors appointment stories to tell y’all since I rescheduled all of my appointments this past week because of the weather. But I can tell you basically what I’ve been up to.

This week was a wonderful reprieve from my normally busy schedule of doctors appointments and physical therapy. I spent most of my days resting, and reading and writing blog posts. I bought a big, cushy Lazy Boy recliner so that I would be able to get out of bed a little, and thanks to a recent medication change I have spent the majority of my days in said recliner other than lying down. That alone is a major improvement since the one position that most aggravates my pain the most is sitting up. Granted, I wouldn’t have been able to do that in a regular chair, but my new one is perfect. It’s big enough that I can cross my legs while sitting in it, which helps to relieve some of the pressure from being in a regular, seated position. I have also recently noticed that I can go longer without taking my break-through pain medication while resting, but I still need it to do any sort of house work. Small victories, but I’ll take what I can get.

I have been working on crocheting my first lap blanket. I got quite a bit done when I realized that I might run out of yarn because I had made it WAY too big. I bet you’re thinking, ok so just buy more yarn. Nope. This yarn was given to me by my sister and there is no telling how long ago she bought it. I have looked to see if I could find the same yarn at the store and NADA. So, I sucked it up and unraveled two skeins worth of work. Today while sitting in my chair (that’s what I wanted the blanket for anyway) I will make sure that the width is what I want it to be before proceeding with starting ALL. OVER. AGAIN. Argh! It’s ok, though, because it was good experience and I will know next time to measure better.

As an update, my dog Bailey who had surgery a while back is doing great! She has completely recovered from her surgery and is finished with her special food, meaning that she has been able to go back to a regular diet and eat with her brother and sister again. I know that she is glad about that. I also finally finished paying off the vet bill for said surgery. Even though the vet I use charges fairly and allows payments, it was still a big bill and the three payments they allow were a lot bigger than I would have liked. However, my babies are worth it to me. Next to go to the doctor will be Molly. She has recently gained a lot of weight even though she eats the same amount as her sister. She also has a hard time getting around. I don’t know if the weight gain is the reason for her mobility issues or if the mobility issues are the reason for the weight gain. It kind of reminds me of the chicken and the egg. Once the underlying issue is dealt with, I am assuming that she will be put on a special diet as well. I’m not too excited about that because the prescription dog food is EXPENSIVE, but like I said before, my babies are worth it. They keep me laughing and like they say, laughter is the best medicine.

So which posts do you like better? The ‘sitting round the kitchen table’ kind or the more informative kind?

Update

I have updated the page My History (Back Story). It is now called About Me (My Story). I hope that if you haven’t read it before, or even if you have, that you will read it now. It is truly the only way to understand who I am, why I’m that way, and why I write what I write.

https://joynpain2.wordpress.com/about-me-my-story/

It Was A Flop

Image from: http://painmanagementlasvegas.com

I was waiting to post until I knew for sure if the nerve block I had done on Friday was going to work or not. It was a flop. It was very interesting how the procedure went. Normally I am put to sleep when they do a nerve block on me, but this time was different. Instead of going in my back, they went in my lower left pelvic area. It was called an ilioinguinal nerve block. It was meant to ease the pain in the pelvic area.

Image from: http://nezhat.org

A part of me knew that it wasn’t going to work as I saw it done. They use ultrasound to find the nerve that runs close to the hip bone. Problem is, my intestines are glued to my abdominal wall by adhesions. The doctor was unable to see the nerve, so he just injected the surrounding area as close to where the nerve is supposed to be as he could. Instead of instant pain relief, it actually hurt worse because he had introduced fluid to an already very tightly filled space.  But, I remained optimistic that it would work within the 24-48hr time frame I had been given.  Not so lucky. When I go back, I hope to discuss one more option that I have found doing my own research. It is called the pudendal nerve. We’ll see what happens. I’ll keep you updated. I will never ever give up hope.

 

Time for Joy

Image from: http://legacy.weeverapp.com

I have had a great couple of days. The pain is finally gone from weeks past and I am left with my everyday pain. What does that mean? It means that for the past 3 days I have been able to do my yoga/PT stretches. Yesterday I was SO SORE! However it has worn off some today and I am left with the good feeling that exercise brings. I have dedicated a whole hour each day to ME. 30 minutes with my stretches and another 30 minutes (to cool down) using a guided meditation or guided yoga nidra. They are basically the same thing. The point is that I haven’t been able to be out of bed for an hour in 3 weeks! This is huge!

I’ve noticed that once my pain levels subside, my mood improves (well who’s wouldn’t, right?) and I am able to see the blessings in my life more clearly. I have gone from a 9/10 pain level to a 7/10 (when I’m sore, but soreness is so much different than PAIN) to a 6/10 baseline.  I’m hoping that the more my muscles loosen up with the stretches that number will continue to go down. The lowest I’ve been since the adhesion pain reared it’s ugly head has been a 4/10. Oh, would I ever welcome that number again! Another benefit to working out: I have been sleeping better. So what if that sleep came during the day or while talking to a friend (sorry Tammy!) the point is that I have gotten some much needed rest.

I have another nerve block planned for the 20th.  Wow, I just realized that’s this Friday.  I am “hoping and praying and wishing and dreaming” (what was the name of that song?) that this nerve block finally works. You know the saying that God never gives you more than you can handle? Well, this would be a good time for him  to discretely intervene. If I understood the nurse practitioner at the pain clinic correctly, there are very few places left where they can try to do nerve blocks (if any at all), so I’m kinda counting on this one.

For those of you who have been wondering how things at home are doing (or I guess I should say if you are wondering what happened after that night), I’m thinking about writing a password protected post so that I may write freely on the subject but don’t risk the wrong people reading it. I have been able to tell a few of you because we have contact outside of WordPress, but I know that there were others who prayed for me and were there for me who might be interested. If you are, could you just comment below and/or email me with your email address so that I can send you the password once it’s done.

Scarf Update:  I have finally finished the scarf I was working on.  Once I get it washed with softener I will take another picture. I have since started a new one. This one I’m doing differently. It is a double crochet whereas the first one was a single crochet. Actually, I haven’t decided if it is going to be a scarf or a throw. I made it plenty long (or wide) just in case.