A New Look At Pain Management

Image courtesy of LDN Research Trust

Many years ago, I received the diagnosis of adhesions. It was very bittersweet. After years of being told that there was absolutely nothing causing my chronic pain (one doctor even highly suggested that I seek the help of a psychiatrist to figure out what was “really” wrong with me), I was told that I was not only not crazy, but that there was actually a reason that I hurt so bad. The adhesions had completely encompassed my entire abdomen, essentially turning me into “stone” because every organ was completely attached to the organ next to it. My intestines were not only out of place, but connected to my abdominal wall, making surgery to try to lysis (remove) them impossible…so I would have to live with this pain for the rest of my life.

I tried for a long time to avoid opioid medication, and managed to go quite a while without it, until one day the pain had gotten so bad that it was affecting my blood pressure. At that point it was highly recommended that I be put on pain control medication. I was able to manage it with my doctor for a few years. Later, I was also diagnosed with fibromyalgia. This completely changed things because now I was not only fighting severe abdominal and pelvic pain, but also widespread body pain. It got to the point where the doctor could no longer control the pain and I had to seek help from a pain management clinic.

At my first pain management clinic, I tried several nerve blocks unsuccessfully and eventually was given a pain patch that would control the pain 24 hours as opposed to the short term medications I had been taking. It was a very strong medication, but it did it’s job for a couple of years, until I decided that there had to be another way…I just had to look for it…

Fast forward a couple of years…I was able to take myself off of the pain medications that they had prescribed me. (How and why I did this is a very long story for another day)…suffice it to say that I was able to stop the heavy doses of opioid pain medication with little to no withdrawals…and remain off of it for almost a year. However, again, I was unable to control the severe daily pain I was dealing with. I did my research and found another way…an off-label use of a medication that was originally prescribed to treat drug and alcohol addiction. At first I couldn’t believe what I was reading! Instead of being used at the 50-100mg dose that was prescribed for addicts, a doctor (his name evades me right now, but I will look it up in case anyone wants that information) had discovered that at very low doses (1-4.5 mg) this medication actually treats chronic pain and muscle spasms. This medication is naloxone, but used in this way it is referred to as LDN – Low Dose Naltrexone. It has been shown to be very effective at treating not only fibromyalgia pain, but also has done wonders for people with multiple sclerosis! I decided that I just had to try it…but where would I get it? After doing more research (yes…I tend to do a lot of research lol) I found only one clinic here that is using this new medication to treat chronic pain….so, I made an appointment.

After going through a few steps to see the doctor (they have a way of “weeding” people out), I finally saw the doctor and was given the normal starting dose of 1mg. I will take the 1mg for up to two weeks (possibly less if I’m able to handle the side effects, which up to this point have been minimal…actually, barely noticeable) and then I will go up to 1.5mg. I will be honest that the first few days were NOT FUN! I had to completely stop the opioid pain pills I was on before starting the LDN. Then, came the waiting period for it to get into my system (it is taken only once daily…at bedtime). However, after the second day I started to feel better. I am now on day 3 of this new treatment and I can already feel that my mood has improved, as well as my energy levels. My pain is somewhat better, however not yet controlled to the point of full relief. I will definitely keep y’all updated to my progress!

Even though I have been on this medication for a short time, I truly believe that it will help. I encourage any of you suffering from chronic pain to research this medication and talk to your doctors to see if it is an option for you. It feels so much better not to be on the opioid medication! My bowels are working again and I feel more “alert”. I am so excited to be on this journey and I hope you all follow along to see how it goes and how this medication could be helpful to you.

Until next time my dear friends….

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My Experience With Orencia

Note: I wrote this blog post back in October, but I waited to post it until I was sure of my decisions…so, this is my horror story from taking Orencia. I have since found another rheumatologist who immediately stopped the treatments, but is redoing my blood work over a couple of months to get a true reading in order to make sure that the original diagnosis was correct and to see how we should proceed….

Image courtesy of Rheumatology.org

For over two years now I have had the diagnosis of “inflammatory arthritis”, which was my doctor’s way of saying “you have an autoimmune disorder, but we just don’t know which one”. Later, (after moving out of state for a few months…which is a story for another day) he notices just how badly my teeth have deteriorated in the time he has been my doctor (and since he last saw me) and adds “possible Sjögren’s” to his notes…and it stays that way for quite a while. Later, I had massive dental surgery where I had 24 teeth surgically removed because of decay and the teeth basically breaking off right at the gum line. Still, no definitive diagnosis. So I go see an ophthalmologist and mention the problems I’ve had with my eyes to him. After listening and taking a good look at my eyes, his response is to say “based on what I’ve seen and what you’ve said, every ‘box’ that would need to be checked for a Sjögren’s diagnosis has been checked. It’s ultimately up to your rheumatologist, but as far as I’m concerned, that’s exactly what you have”. So at my next visit to the rheumatologist I bring up what the opthamologist said, in addition to the fact that last time bloodwork was taken, my inflammation level was 12 (12!!! The lab marks it high at anything over 4.9!), and the fact that I’m having a flare up requiring a steroid pack at least monthly…and I ask him if he’s ready to diagnose me and be more proactive with my treatment (up until then I’d been on a low-dose chemo…methotrexate). He claimed that he agreed with the opthamologist and we probably needed to add a “biologic” medication to better control the flare ups and the inflammation level. His first choice was Orencia, supposedly because it was the “least invasive” as far as risk of infection. I’m still not sure why he thought that I would be unusually succeptable to infections

A week later, on August 23, I had my first infusion of the type of medication I had heard horror stories about. It was truly my last ditch effort at getting some relief from my “mysterious autoimmune disease” that had plagued me for years. I was both scared and excited at the same time…scared of the side effects and excited that I might actually get better from this treatment. The first three infusions were given two weeks apart, with the fourth and each subsequent infusion given four weeks apart. I was told not to expect results for about two months. So from August 23 through sometime around the beginning of October, I endured extreme fatigue, uncontrollable muscle spasms, indescribable pain (to someone who doesn’t deal with chronic daily pain…majorly increased pain otherwise), and a daily low-grade fever. On many occasions I wanted to give up and stop the treatment, but my husband has been my rock and has supported me every step of the way. He would remind me how much better I would feel once the treatments started working, and he and his love and support has gotten me through each and every day of this living hell. For almost two weeks until the next treatment (two weeks after the third treatment and almost two weeks until the fourth treatment) I started to feel a little better. I honestly believed that the biologic was working and that I was going to get my life back. Boy, was I wrong.

On the 18th, I had my fourth infusion. This time, instead of the effects hitting me the next day, they hit me almost immediately…within 1-2 hours. Again, I’m feeling the full force of this “poison”…muscles constantly on the verge of spasm (despite muscle relaxers), a low-grade fever, and fatigue to the point of barely being able to move. My doctor is completely indifferent to any of the side effects and suffering this medication is causing, and insists that I continue with this drug for a total of 6 months before even considering switching to a different biologic.

At this point, not only have I decided that this will be my last dose of “poison”, but also the last time I see this doctor…

The “Me” That People Never See

 

This was previously posted on The Mighty. You can check it out here. Note, sometimes titles are changed and posts are edited.

 

The funny thing about having an invisible illness is how many people think that we’re “faking it”. Faking being sick, faking needing rest…even faking needing medications. The truth be told, the majority of the time we really are “faking it”…just not like people think. We are pros at faking being well, or of being healthy. These illnesses have affected our daily routines, our quality of life, and even our relationships with friends and family. For that reason, we tend to grasp at anything that makes us feel “normal”.

When I’m able (or required) to get out of the house, I don’t go out in sweatpants and a t-shirt (although leggings have become a staple in my wardrobe). I dress up when I can, and if it fits the occasion. Any other time, I’m adamant about looking decent and matching my clothes and shoes. I’ve even been known to match my cell phone case to the clothes I’m wearing that day (ok, so maybe that’s overdoing it some lol). When time (and energy) permits, I wear makeup. It makes me feel better…more confident…and I want to be (or appear to be) a “normal” person…even if only for a little while. This is what people usually see:

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I don’t want people to see the very dark circles under my eyes caused by either pure exhaustion or from overdoing it on a “good” day. The only people who get to see the “real” me, the “sick” me, here lately, are my husband and my (step)kids…although I absolutely hate for the boys to see me that way either. I want to be a fun mom who can cook for them and play with them, but unfortunately I’m not always capable of that. Sometimes, even around the boys, the mask gets put on. I am a pro at wearing that “mask”. The “I’m healthy” mask, the “I’m happy” mask, and most importantly the “I’m fine” mask.

Normally, the “mask” is an easy, quick fix to appearing to be “normal”. I mean, really, who wants to look sick!?! These past two months, however, wearing that mask has been close to impossible. My doctor started me on infusions of a biologic medication that, in addition to my weekly injection of low-dose chemo (methotrexate), have succeeded in completely laying me out. Many days have been a struggle just to get up to use the restroom without almost passing out or almost throwing up.

For some strange reason, my sister texted me on one of those days to see how I felt. I had no answer for her other than to take and send the following selfie:

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This is me without the “mask”. This is me sick, nauseated, dizzy, in an obscene amount of pain, and completely exhausted although I had only been awake for a little over an hour. This is the part of me that I normally hide from the general public. This is exactly what I don’t want people to see…my weaknesses. It makes me feel vulnerable, and to be honest, worthless. I know better than anyone how strong of a person I really am. I shouldn’t feel the need to “prove” it to anyone by hiding my pain and fatigue. I know that. But I do it anyway…most of us do. We don’t want people to think that we complain too much or that we are hypochondriacs. So what do we do? We simply fake that smile, put on that mask, and adjust that crown…we manage to make it. Some days, that just has to be good enough.

Being Judged…An Open Letter

This was originally featured as an article for The Mighty. You can check out that link here.  Note, often times titles are changed and content is edited.

 

By the nasty look you gave me, I’m assuming that my ability to momentarily get out of the scooter I was using offended you. Not that it is any of your business, but I needed that scooter to be able to get around the store to purchase groceries. Stores aren’t exactly set up to be accessible to people with mobility issues, so from time to time I have to get up in order to get a product that is beyond my reach. I’m also assuming that since I look “fine” you think that I am just being lazy by using a scooter. Well, here are a few things that you should know….

No, I do not have cancer and therefore still have all of my hair (thank God!). However I do have a couple of autoimmune disorders, and the treatment that I’m currently receiving has side effects very similar to those of chemotherapy. As a matter of fact, I am on a low dose chemotherapy that I inject myself with once a week. When that treatment stopped helping and my inflammation levels were sky high from my body attacking itself, the doctor added a new medication by infusion to my already extensive medication regimen. This drug works like chemo in that it kills cells…in my case, white blood cells (T-cells), the “military” cells that attack when you’re exposed to germs or bacteria. Because of this, my immune system is very compromised right now and I have to wear a mask in public to keep from getting sick. YOU and any germs you are carrying could cause the common cold to become a severe infection like pneumonia to me. This medication also causes severe nausea and extreme fatigue, just like chemotherapy does. There are some days that I can barely lift my head and body just to go to the bathroom (recently this has been most days).

With that said, life goes on. I still need groceries just like everyone else. When I’m having a good day and am able to walk around the store, I do. However with my body exhausted from the constant internal battle with my immune system and the constant pain, there are days that walking around the store just isn’t an option. And if I need something that I can’t reach, then I must stand up and get it.

Maybe it would make you more comfortable if I could afford a personal shopper to buy and deliver my groceries for me, but I can’t. Maybe you think I should sit there like a damsel in distress until someone walks by and then ask them to get the product for me. And maybe, if I were bald and “looked sick” you wouldn’t have thought twice about the fact that I was using a scooter. Well, I’m sorry to bust your presumptive little bubble, but there are many, MANY people who fight invisible battles with their health, and I am one of them. I will not apologize for being sick because it’s nothing I did to myself and I sure didn’t ask for it to happen to me. I also will not apologize for using a scooter in order to get around to get the things I need nor for having to stand up to reach something.

I am, however, sorry that you weren’t taught empathy for others. I’m sorry that you felt the need to judge me unfairly. But most of all I’m sorry for the next person who has to deal with your rude ignorance.

Welcome To My Blog!

Hello everyone! My name is Joy and welcome to my blog! The title “Chroniic Illness Chronicles” comes from my daily struggle with chronic illness as well as those of my husband, Chris. That’s right…my husband and I both deal with chronic illness, which is highly unusual. Normallly, one spouse is the patient while the other spouse is the main caregiver. In our house, however, we are both patients and caregivers. It is a very…unique…situation. Luckily, we both knew what we were getting ourselves into. As a matter of fact, that is what brought us together in the first place, and also what helped us in deciding to not only stay together, but deciding to make it official and get married.

Finding someone, be it a friend or relative who completely understands your daily struggle with being sick is hard enough as it is. Finding that in a partner/spouse is extremely difficult.  Luckily, we were blessed to find exactly that in each other: complete understanding (of the disease and emotions that go with it), support (both physically and emotionally, and empathy in what the other is going through. Most importantly, we found true love. It is such a beautiful thing and just…well, when you find the right person, you just know. 

We hope you enjoy visiting our blog, where we will share our illnesses, our treatment failures, and our treatment successes. We want you- as a fellow chronic illness warrior- to know that you are not alone in your struggles. We want you- the caregiver- to know that you are not alone in your struggles either, and also to know the importance of self-care in order to better care for and/or support your loved one or friend.  We also want you- the healthy person looking at this from the outside- to understand what life is really like for us: the daily ups and downs, the judgements we often receive from people like yourself, just because of our “invisible” illness. We would like it if, even if you can’t see what’s wrong with us, to learn that not every illness can be seen.  Please reserve your judgements and try to be patient with us. Our journey may be different from yours right now, but nothing in life is guaranteed. We certainly didn’t expect for this to happen to us…we didn’t ask for this, so please don’t make our already difficult lives harder. Most importantly, we want you to really see what we usually don’t allow others to see, and we hope it teaches you to not take things in life for granted. You were blessed with health, so live your healthy life to the fullest while you can. Be grateful for the gift God has given you, but never take it for granted, because that same gift could be taken away in the blink of an eye…just as it was taken from us. However, because of our illnesses we were blessed as well..with patience, and with gratitude for the good days. We learned how to not only stop and smell the roses, but to admire their beauty- their shape, their color, their mere existence…because one day we may lose the ability to do so. Take life in, experience it, live it, and share it with us. Let’s work together and teach each other. We don’t want your pity.  We simply ask for your understanding!

I hope you’ve enjoyed this introductory post and continue to come back and read more!