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!

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.

 

Reblog: A Perspective of Suicide

I have written before about chronic pain and suicide (here). However, here is a post that way better explains this phenomenon. Please give it a read. It makes you rethink the way you see suicides by chronic sufferers of physical or emotional pain.

A Perspective On Suicide

Down Time

I know that it has been a while since I’ve written, but I’ve needed some down time. I did way too much during the first few days of the month and now I’m paying for it. I’ve spent two days completely bed-bound and then another two days where I have been able to get out of bed for short periods of time and then I have to lay back down again.

I have also dealt with some recent disappointments. I would rather not go into details. Just know that I have been sad lately. I will climb out of this hole soon enough. I am strong ad will recover soon from this down time. I have also gotten behind in reading your blogs. Once I’m able to sit up for longer periods of time I will catch up on those.

I just wanted to let y’all know that I’m still here, still kicking it, and will be back soon. I hope you are all ok and having good days.

Guest Blogger: Laura Macky

Image credit: englishwithatwist.com

 

Today I have a special guest for you all to meet. Her name is Laura Macky and she is a photographer, showcasing her beautiful work on her blog lauramacky.wordpress.com. You can read a bit more about her on her “About” page found here. Like many of us, Laura has spent a lot of time with her “happy face” on to the rest of the world, all the while hiding her physical and emotional pain on the inside. I really hope you all enjoy her writing because I’m trying to convince her to write a series of posts (in other words, let’s show her lots of love in the comments section so that she’ll come back 😀.)

Enough of my chattering, here she is: Laura Macky!

I’m honored that I’ve been asked to do a guest blog here. It’s kind of a big deal for me because I’m one who likes to present a smiling face and one who doesn’t show what’s really going on inside. But I think a lot of us are like that, don’t you? Lately, life has been a journey of awakening, spiritual growth and learning how to deal with a myriad of physical and emotional issues. Thankfully, I’ve learned how to awaken creativity inside of me in a new way (meaning photography) which has given me a new lease on life!

Almost as far back as I can remember, I’ve battled depression and addictions due to a dysfunctional upbringing. Growing up was not a happy place to be most of the time emotionally, and when I started having physical problems on top of that, it sunk me further into depression and addiction. Fortunately, I’ve been working on myself with a wonderful therapist who I call “Dr. Bill”. He is a gem and I really don’t know where I’d be today without him.

My physical problems pretty much all started with an auto accident which set me up for a lot of health issues. After having neck surgery, I was left with nerve damage on my right side from my jaw down to my fingers which means I have a very hard time doing simple tasks and have constant pain on that side. Also after the surgery, I developed a severe case of fibromyalgia. For years I kept thinking it would “go away” and I spent a lot of time in doctors’ offices reading a lot of sailing magazines, lol. I’ve often wondered if sailing magazines give discounts to doctors or if there really are that many doctors who sail.

Needless to say, I was very down in the dumps. I could no longer play the piano which had been my “go-to” hobby since I was four years old, gone were the days of working out at the gym which I so loved, and I was so depressed that I really didn’t want to live any longer. I was a mess yet always presenting a smile on my face to the world and my family.

Finally, I realized I had to do something. Slowly but surely I started a Laura Macky overhaul in the way I interact with life. The realization set in that things weren’t going to improve drastically physically, so I had to change the way I viewed life from the inside. I started working on myself through therapy and support groups, but I still missed having a hobby. Hmm…what to do…….

Enter photography! It’s a fairly new hobby for me, more seriously delving into it in the last year, and it’s made all the difference. Photography has given me the excitement of seeing things again. Our world is so beautiful and I’m happy to be a part of it again; not only physically but with everyone I’m meeting via WordPress too. I really enjoy reading others’ blogs of all different types, and when we all share things together it makes it even better!

I really appreciate this opportunity to open up and share what’s really behind the lens.

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

How perception changes an illness: Neha Kinariwalla

This is amazing work being done by Neha Kinariwalla. I believe that it could apply to all illnesses, visible and invisible. Please take the time to read my friend’s post and watch the video. How do you think we could get involved?

 

Patients are profoundly affected by societies perception of their illnesses. So much so, that their own wellbeing can be at stake. Neha Kinariwalla is here to explain why this perception matters, and more importantly what we can do to change it. In this thought-provoking…

To read more and see the video, follow this link:  How perception changes an illness: Neha Kinariwalla.

Appointment: Fail

Image credit: http://www.drfranklipman.com

I had a doctors appointment yesterday with the doctor who missed my UTI right before Thanksgiving. I took a copy of the post I wrote, Open Letter to General Practitioners. I asked him to please read the letter all the way through before commenting. I was hoping that he would understand my concerns and agree with them. However, I wasn’t so lucky.

He immediately became a little bit defensive. He swore that he sees UTIs all the time and that the lab report, which was positive for both bacteria and leukocytes (white blood cells) was not indicative of a UTI. He said that he was not implying that I didn’t have one a week later when I saw my specialist, or that the antibiotic I was given didn’t help my symptoms. Simply that I did not have one when I saw him. I asked if it was possible that I did have an infection, but that it wasn’t bad enough to register (haha) on the lab report. He held his ground that no, I did not have an infection when I was in his office.

As far as the specialists are concerned, he said that I have to remember that I am a very special case with extreme intestinal issues and that I will always need to consult with my specialists. He referenced my pain and anxiety medications as examples of why he couldn’t be responsible for refilling my medication. I told him that I wasn’t referring to those medications and that I was aware that I would have to continue seeing both my pain specialist and my psychiatrist for those particular medications, but that I was talking about the rest of my medications. Again, he said that I am a very special case and that I will always have to check in with my specialists. He was missing the whole point. I never said that I was going to quit seeing my specialists, simply that he be the one I see first. Oh, and remember that this is the same doctor who refused to refer me to a rheumatologist…a specialist.

My current concerns were that I am having joint issues, mainly my knees and my hips. Also, I am having a hard time sleeping. I only sleep for two hours at a time before waking up and having to try to fall back asleep again. He said that he believed that my hip discomfort is a result of bursitis and that my knee discomfort a result of my tendons, not my joints. He said that the only treatment for those conditions are NSAIDs but that since I am sensitive to NSAIDs, he really couldn’t do anything about either one of those issues. He said he believed that once I start sleeping better with the medicine he was going to prescribe for my sleep issues, that he thought that the pain/discomfort I feel won’t be so pronounced. The medication he wants to give me for sleep is a Serotonin re-uptake inhibitor that was originally marketed for depression, but is really not effective for depression. I reminded him that I have an extreme sensitivity to depression medication (for more info, check out my About Me page) He said that since it was never really effective for depression, that he didn’t believe I will have a problem with it. By this point however, I don’t know whether to trust him or not. I think I will call and consult with my psychiatrist about whether I should take the medication or not. I will feel safer that way and besides, if I react badly to the medicine, she will be the one who will have to clean up the mess.

So, all in all, the visit was a FAIL. Since he still feels the need to be untruthful, I will begin researching the other GPs in my area. I will stay with him until I mail in the disability paperwork he signed for me that will help me with my school loans and wait for it to be processed before switching doctors. In the meantime, unless I have the flu or a cold, I will continue to consult with my specialists for all my other medical needs. When I do switch doctors, I will proudly carry a copy of my open letter to general practitioners with me so that we begin our relationship on the right foot. I know that good, honest, transparent GPs are out there because I had one at one point. Because of insurance reasons I am no longer able to see her, but I will continue the search for one like her. I will not give up until I find one.

Chronic Pain and Suicide

Image credit: Pinterest

With chronic pain comes a chronic condition: suicide. when you think about it, it makes sense. When someone hurts day and night for any significant amount of time, feelings of helplessness (especially in regards to the medical system, but also in inability to perform activities one used to do) and worthlessness (loss of income due to inability to work) can add to the burden of living with unrelenting pain.

According to rsds.com:

— Over 30% of the US population is affected by chronic pain

— Prolonged pain conditions are associated with significant interference in physical, social, vocational/educational, and sexual functioning

— Excluding arthritis, people with chronic pain are four times more likely to attempt suicide than other adults (National Pain Foundation)

And according to an article in the Orlando Sentinel:

— Large-scale studies show that at least 10 percent of suicides — and possibly as many as 70 percent — are linked to chronic illness or unrelenting pain.

With numbers like these, it’s easy to see just how big of a problem chronic pain can be in the lives of its sufferers.

I personally have considered suicide a time or two. I have been lucky in that I snap out of it quickly and get back into warrior mode. I however, am lucky in that I have doctors who understand my condition and are willing to prescribe medications that take the edge off of my pain, allowing me to think more clearly and deal with life as it comes. I also have a psychologist and a psychiatrist who understand my pain and work with me on stressors so that I can better deal with the things that life throws at me, including the pain itself.

Others aren’t so lucky. Without the appropriate pain medications and psychological/psychiatric help, the physical and emotional pain can become completely unbearable. Without belief and support from friends and family, the situation becomes worse for the sufferer. To be honest, the times that I have considered suicide, it was because of a lack of a support system.

I am writing this post in honor of a very good friend of mine who is dealing with this problem even as I type this post. I want her to remember that she has friends that care about her and who love her. We understand what she is going through. I pray that she is able to get some kind of relief soon not only from her pain, but from the other struggles that she is facing at this time. I ask that if you’re reading this to please say a prayer for my friend. If you don’t pray, then send as many good thoughts and feelings to her as you can.

Have you ever contemplated suicide because of your chronic pain?

Do you know someone who has been in this situation before? What helped them through it?

Do you believe and support your chronic pain friends or loved ones the way you should? If not, please understand that things like being called lazy or unproductive can reach the very soul of the patient and can cause these types of thoughts.

Are you, as a doctor, doing everything you can for your chronic pain patients, or do you get frustrated and try to pass them off to another specialist? Please understand that we, as patients, place our trust in you to believe us and to help us. We need you more than you can imagine. If you are stuck and don’t know where to go in their treatment, tell them so. Find someone who can help, but make sure that the patient knows that whatever happens with the referral, you are still there for them.

Life is hard for everyone. Try to imagine your everyday stressors and add to that the worst pain you can imagine. Now think how your life would be with that kind of pain 24/7, people who don’t believe that you are in pain, financial hardship because you are unable to work, and on top of all that is your everyday stressors. That is what we, as chronic pain patients deal with daily. Be kind. Understand. And most importantly, look out for warning signs of suicidal thoughts. These are your loved ones, your neighbors, your friends. Be there for them.

My Messed-Up Mind

I just saw a commercial for St. Jude children’s hospital. There are so many innocent children with cancer. It is sad and totally unfair that they should go through the hell that they go through.

Here comes the messed up part. The commercial made me cry. Why? Not for the children, but for me. I know that it is so completely selfish of me, and I am ashamed to admit it, but it did. I guess you’re wondering why it made me think of me. Well, to be honest, I envy them. I know that it is completely insane, but that was my reaction. I was jealous because I have thought on multiple occasions how much easier my life would be if I had cancer instead of adhesions that cause chronic pain.

First of all, people would better understand what I’m going through. There would be no confused looks when they hear of my uncommon, invisible illness. They would understand when I say I’m exhausted after having done absolutely nothing. They would understand when I say I’m in pain. I wouldn’t feel as though I had to explain myself all the time, to explain how I’m not lazy, but sick.

Second, cancer has two outcomes. One, you go through treatments to find out that the cancer is in remission. Or two, you go through treatments and find out that they haven’t worked, and you die. I know this sounds extremely harsh, but that is how it is. I don’t have those options. There are no treatments that will make my adhesions go into remission. They will always be there, making my life a living hell. Sometimes, so much of a hell that I wish, no, pray that God will just end it. I pray that he ends my suffering, and my loneliness. I would no longer have to deal with people’s misunderstanding of me, my illness, and my suffering.

Third, I’m jealous of the children’s strength in the face of adversity. They are so strong, so resilient. They are fighters through and through and through. I wish I had their strength to face my own adversity.

Maybe I’m wrong for this. I’m sure I am. But this is how I feel at times…so misunderstood that I wish it would end. I wish the pain would end. I wish the suffering would end. I truly feel for those children. I know that they are probably suffering the same or more than me, and I am truly humbled by their resilience. It is not fair that any of us have to suffer. I’m just voicing an opinion that I probably am not alone in having. I’m sorry if I have offended anyone with this post.