Tag Archives: treatment

Why a Diagnosis is a Reason to Celebrate!

 

 

 

 

 

 

 

 

Before receiving my first chronic illness diagnosis in 2001, I would have scoffed at the idea of celebrating anything other than hearing my doctor say that all tests came back showing nothing wrong.  However, my attitude changed quickly when one test after another showed nothing wrong when their clearly was something very wrong…….

I have celebrated each and everyone one of my diagnoses.  It wasn’t because I wanted to be sick.  Seriously, who in their right mind would want to have psoriasis, fibromyalgia, psoriatic arthritis, degenerative disc disease, coccydynia, and a belly full of adhesions (from endometriosis and surgical scarring) that to this day are attacking her bowls and bladder? Not me!

You are probably wondering why I would even contemplate celebrating a list of conditions that aren’t curable.  I have celebrated each one, because they gave me insight to what was going on in my body. Instead of knowing something was wrong, but having no clue as to if there was something I could do different to make it better or if I was making it worse was maddening.  Knowing what I was dealing with helped me move on.

*Disclosure: This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in my Facebook groups.

 

 

 

 

 

 

 

 

 

 

 

 

 

Having a diagnosis validated my instinct.  Like when I knew there was something severely wrong going on in my belly, yet 22 surgeons either blamed it on fibromyalgia or said it was all in my head.  Click here to read about how their ignorance and refusal to listen to me put my life in danger. Every nurse and physician in the recovery area were in shock and horrified by what my surgeon had discovered during surgery, but not me.  I was smiling ear to ear, because his findings validated everything I had been saying for two years! I wanted to go to the rooftop and shout “Who’s crazy now??!!!???!!”

Without a diagnosis, friends and family believed each and everyone of those incompetent surgeons.  They would even suggest to my face that I wanted to be sick.  Living without a diagnosis is devastating, not just physically, but it has the ability to kill relationships.  Do you know how hard it is to trust those who believed the physicians over me?  To this day, there are some relationships that will never be mended.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I could research symptoms until the cows came home and still have no idea what was going on.  Having a diagnosis to research gave me insight to what my future may look like.  It helped me accept that I had to make changes to how I lived, did things, and what I expected from my life as I grew older.  A diagnosis allowed me to let go of my old life, to make modifications to how I did things, to experiment and find ways to improve my health and lower my pain.

Having a diagnosis makes talking with others a little less frustrating.  Instead of saying I don’t know what the hell is wrong with me, I had a disease to declare! Of course nobody seems to get that my diseases are not curable, but that’s another issue.  At least I had a name of an illness that they could look up to learn more if they chose.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A diagnosis made it possible to meet others who are experiencing the same thing.  While we each have our own unique struggles, it is nice to bounce ideas off of each other and sometimes we find something that helps us all.

Do I wish I had never become chronically ill?  Of course, but I am thankful for each diagnosis, because without them I wouldn’t have been able to find a way to live with my symptoms or to reduce the pain that comes with them.

Was there a time in your life that you knew something was wrong, yet all the tests came back showing nothing wrong?  How long did it take for you to be diagnosed and what was your reaction?

 

 

 

 

 

 

 

 

 

 

 

 

PEMF therapy with Oska Pulse has taken my pain management plan to a whole new level! Click here to see how it has improved my chronic life and click here to learn more about the device and how it may help you too! BTW My discount code DIVA will save you $55.00 when entered at checkout!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Is How You Practice Self Care Constructive or Destructive?

Is How You Practice Self Care Constructive or Destructive?

There was a time when I thought that self-care was just doing something that made me happy or comforted me during a flare.  Turns out I was wrong!  While self-care can be pleasurable, there is a lot more to it and it’s not always pleasant.  Today I share why we need to focus on all forms of self-care and not just the ones that make us happy.

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What is considered self-care?

Self-care is defined as the practice of taking action to preserve or improve one’s own health and the practice of taking an active role in protecting one’s own well-being and happiness, in particular during periods of stress.

Self-care may look different from one person to the next, but we should have the same end goal of improving our physical and/or mental health.  Ways to do this are through personal hygiene, exercising, eating healthy, pacing ourselves, resting before we completely exhaust ourselves, napping when needed, following a schedule, adhering to a treatment plan, listening to our bodies,  etc.  Some other ways of practicing self-care are to care for our mental health by allowing ourselves a night or afternoon out with friends/family to laugh and let loose a little.  While not often fun or exciting, dealing with issues that are creating extra stress and anxiety in our lives is a must.  The longer we let things go, the more impact they have our lives and health.

One of my favorite forms of self-care is to spend time at the beach.  Sitting in the sand and listening to the waves crash soothes my soul and body.  Going for walks and eating healthy meals used to feel like a form of punishment, but in the past year and a half they have become my number one form of self-care.

What isn’t self-care?

Self-care is not a punishment! If it feels like one, it may be time to reevaluate why you believe it is.  Instead of thinking of cutting out or reducing how much comfort or junk food you eat as a punishment, consider what that food is doing to your body.  I found that the foods I was finding comfort in were actually contributing to my pain and fueling my chronic illnesses.  Once I was able to accept that I was responsible for some of my downtime and pain, I was able to see choosing healthier options in a different light.  I am not suggesting that I never indulge, but that when I do I call it what it is: an indulgence, NOT self-care.

Self-care isn’t about creating more pain, anguish, stress, or health problems.  Another reason that comforting myself with food isn’t a form of self-care is because it often leads to weight gain.  Gaining weight won’t help my chronic illnesses, in fact it will just add more stress as I attempt to rid my body of it.  To be clear, I am not saying that weight loss will cure me, but that instead my body will be under less stress.  I don’t care if you have one or fifty chronic illnesses, consistantly choosing to eat poorly and adding more health issues is never the answer.

Self-care isn’t about avoiding confrontation just because it is uncomfortable.  Self-care is standing and speaking up for yourself when necessary.  Self-care is caring for, protecting, and improving your mental and physical health.   Don’t stop caring for your heart and lungs just because your ovaries, kidney, muscles, or joints decide to be assholes.  You need all the strength you can muster up to face your chronic illnesses every day!

How to know if your form of self-care is constructive or destructive

The best way to determine whether or not your form of self-care is constructive or destructive is to observe what happens afterwards.  If you spent the night puking in the bathroom and can’t lift your head from your pillow after an evening out drinking with friends, it is safe to say that you weren’t practicing self-care.  There is nothing wrong with going out with friends if you are up to it, but you don’t have to drink alcohol.  Wouldn’t you have rather enjoyed laughing with your friends then going home for a good night’s sleep and be able to get up and do something else the next day?  Did your favorite comfort food force you to spend the afternoon on the toilet?  Unless you were severely constipated, there is no way to call it self-care.

Not everything you do will improve your life at that moment or at all, but a sign that what you are doing is a form of self-care is that it didn’t make your life worse!  Sure maybe standing up to your doctor or removing an abusive person from your life may feel stressful or painful for a moment, but in the long run your life will improve. Eating a healthy meal may not decrease your pain, but over time you will feel better than if you were consistently eating foods that fueled your chronic pain.

Take some time and think about how you are practicing self-care.  Can you identify what needs to change?  If not, try keeping a journal detailing how you practice self-care and your results.  If you see a pattern of destruction following some of your favorite forms, it may be time to make some changes.

Don’t know where to start?  Check out my eBook Make Pain Your Bitch: How to Dominate Your Chronic Life.  In it I share many of the changes I made in my chronic life and challenge you to acknowledge and make changes that will better your life.  Click here to order and download your copy today!

Join my Facebook Groups!

Alternative Pain Fighting Forum: Where we discuss natural and alternative ways to reduce chronic pain

Fitness Buddies: Support and encouragement on our wellness quest, because having a chronic illness is not a reason to not care for our bodies.

Spoon Rest: Support, laughs, and friendship.

Product Picks: Products that will improve your life, comfort you, or just make you smile.

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Julie’s Psoriatic Arthritis Journey

Julie’s Psoriatic Arthritis Journey

Today Julie from It’s just a bad day, not a bad life  shares how she treats psoriasis.  Please remember that Julie and I are not medical professionals and cannot give medical advice.  We are just sharing our experiences and opinions.  Check out It’s just a bad day, not a bad life and be sure to follow her on Facebook, Twitter and Instagram.

In the beginning

I started having knee problems when I was in fifth grade. At first, the doctors treated me symptom by symptom, but soon were unsure of how to help me. When I was in middle school, my orthopedic surgeon suggested I see a rheumatologist. I ended up getting two opinions. One said nothing was conclusive, but the other suggested I had psoriatic arthritis. Because I wasn’t even through puberty yet, he didn’t think it was a good idea to start on the new drugs that has just hit the scene – biologics. He suggested I treat the flare ups as they came.

I never believed what he said. I remember my Mom and I having screaming matches when she would suggest my problems were arthritis related. I was a young teen, not a grandma. How could I have arthritis? We didn’t have the internet to do research and I certainly didn’t know anyone who had psoriatic arthritis. My family and I had no idea what psoriatic arthritis even meant. None of us truly understood what it meant until about 17 year later.

What started as a simple surgery (my 4th knee surgery) in June 2012, turned into having another surgery in September (my 5th), resulting in a week long hospital stay in December 2012. As I laid in that hospital bed, I wanted anything and everything that could get my pain and inflammation under control. I couldn’t even move without pain shooting through my whole body. I spent weeks on end not being able to rest or function. After “officially” being given a diagnosis of psoriatic arthritis I was put on methotrexate. About 3 months later, I began taking Humira. I first started taking Humira bi-weekly, but after a year of taking it I switched to weekly.

During the course of 2012 and 2013, I was put on so many different medications. At the height of it all, I was on 9 different prescription drugs, plus two different injections. It was for a myriad of different conditions – psoriatic arthritis, avascular necrosis, complex regional pain syndrome, depression, anxiety, prothrombin thrombophilia and melanoma. Every time I went to the doctor with a new symptom, I was given a new prescription.

Time for a change

I really started to get fed up and knew there had to be a better way. Learning from others on Twitter, Facebook and through blogs, I started a journey to change my life.

I became a data crunching machine, logging EVERY little thing about myself. I created my own pain scale so that I could accurately reflect my pain on a day-to-day bases and a massive excel spreadsheet to log every little data point I could think of. My chiropractor has always taught me that everything can be traced back to a physical, emotional or chemical cause. I was determined to figure out what was making me sick and how to manage it.

In the end, I was able to create my own personalized treatment plan. I started putting things together and began to eliminate foods, toxins, activities and other things from my life that caused me flare ups. I went being on disability, spending 5-6 days not able to get out of bed, to working and even teaching yoga twice a week! After all my research, there are 5 main pillars to my psoriatic arthritis treatment: Diet, supplements, avoiding toxins, meditation, and yoga/movement.

I was able to get off of ALL of my medications after making these adjustments. I stayed off of Humira for 2 years, but just within the last few months I did have to start back on Otezla. It was a tough pill to swallow (pun intended), but I know I have to do what’s best for my body.

 

Living an amazing life

Every day I have to focus on managing my condition. Whether it’s the food I eat, the amount of rest I get, how much work I’m doing or focusing on self care. My condition never gives me a day off. BUT, having said that, I still live an amazing life.

Throughout all of my health struggles, I’ve truly found my strength. I’ve found my passion in life, I’ve met some pretty inspiring people (like Cynthia!) and I even had the opportunity to present at Stanford Medicine X this past year a case study on all of the changes I’ve done to manage my psoriatic arthritis. Had I not gone on this healthy journey, I wouldn’t be where I’m at today. And for that, I am grateful.

Click here to read all of this month’s guest posts!

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Different Ways to Treat Fibromyalgia

Different Ways to Treat Fibromyalgia

May 12th is Fibromyalgia Awareness Day, but I am declaring it Fibromyalgia Awareness Week!  All week long a handful of fabulous guest bloggers and I are sharing the different ways that we treat our condition. There isn’t a perfect treatment plan, but we all have found various ways to combat the pain that this ugly disease creates.

What Makes Fibromyalgia Less Frightening for me ~The Disabled Diva

Mr. Fibro Became His Best Advocate ~Norman Hanley

 Kim From Grace Is Sufficient Recognizes Her Fibromyalgia Triggers ~Kimberly J Penix

How The Girl With Five Lads Functions With Fibromyalgia ~Ness

Nikki from Brainless Blogger’s Formula for Fighting Fibromyalgia ~Nikki

 

Alisha shares her long road to relief from psoriasis

Alisha shares her long road to relief from psoriasis

Today Alisha from Being me in my own skin shares how she treats psoriasis.  Please remember that Alisha and I are not medical professionals and cannot give medical advice.  We are just sharing our experiences and opinions.  Check out Being me in my own skin and be sure to follow her on Twitter and Instagram.

Before the early 90’s there were no vaccines for chicken pox. Chicken pox is an itchy, blister-like rash that usually comes and goes away after about a week. As a kid, it was a virus you were expect to catch, it wasn’t a big deal. Some parents would even purposely expose their children to other kids who were currently contagious with the virus so they could get the process over with before they became too old. The vaccine for chicken pox was approved in the early 90’s for kids, so this virus is a thing of the past. Unfortunately I acquired the chick pox virus at the age of 7, around the same year the vaccine became available.  Prior to the virus I had patches of dry skin on my knees and elbows, but my family didn’t think anything of it. After chicken pox, you normally have scars left behind, which signify your encounter with the virus and the amount of scratching you did. My grandmother noticed my “scars” were a little different than what normally appears after the virus leaves. She then took me to the dermatologist who surveyed my skin and determined I had psoriasis.

At that age it was hard to comprehend exactly what it meant to have psoriasis. I knew I was different but the ideas of beauty did not manifest until around the 5th grade, this is when the pressures of good looks and school crushes came into play. The treatment side was also a challenge. Up until the age of 18, the only treatments I could use were topicals, phototherapy, and occlusion. My grandmother was desperate to help me to achieve clear skin. She would take me to phototherapy at least 4 times a week. The trip to the doctor was about 50 miles there and back. As you cabn imagine she spent a lot of time and money to ensure I received the best treatment. Unfortunately light therapy was not the best treatment for me because it did nothing for my skin but at that time it was really the only option I had from the time I was 7 until my late teens. Around the age of 16 a team of doctors worked to get me on enbrel. At that time it was only available to those who were 18 or older, but my case of psoriasis was so bad the doctors wanted to see if I could get special approval. Unfortunately the company said no, and years later I was afforded the opportunity to use the drug, in which I found it did absolutely nothing to improve my skin. Up until my ;ate 20’s I was covered with psoriasis by 90%.

 


Once in my early 20’s I had WAY more options when it came to treatment, I also had more of a say-so than when I was younger. Around 21, I started with medicine in a pill form. The doctor prescribed an oral steroid which I was instructed to take for a few weeks only, then I would have to discontinue for period, and then start it again later. The issue with this medicine is it cleared me completely, but I suffered from severe depression while on the drug so it was not something I could function on. After that I moved on to my first biologic, which I mentioned earlier. The first one was enbrel, which did nothing to improve my condition. It wasn’t until almost 5 years later that I had the opportunity to try Stelara, which for the first time in almost 20 years cleared me up by 80% with in a year. I was elated to be on a drug that actually worked. But almost 2 years of using the drug, my body became use to it and it stopped working, which for some is a common issue for those on biologics. Unfortunately when the drug stopped working I started to show signs of arthritis, which is apparently a disadvantage of using biologics, sometimes your disease can worsen when and if the drug stops working or you stop taking them. I had always had slight pain in my knees, but the pain seem to appear in other areas such as the joints in my hands, something I had never experienced before.

 

Currently I’m on taltz, which has cleared me 100%. Since I didn’t have much trouble with the arthritis the mobility part of the disease is not currently a huge concern, but is something I monitor closely. Since my psoriasis is gone my quality of life has improved by 100%! I am more vibrant, more confident, and way more outgoing. My anxiety and panic attacks have also decrease by a significant amount. Although at this time I’m psoriasis free I’m not totally absolved from the disease. I worry about this current medicine one day no longer working, and honestly this drug is really my last hope at the moment. I don’t have any other options if this drug doesn’t work because I’ve tried everything available at this point. I also worry about the severity of my depression if my disease comes back. I can’t imagine being 100% clear and going back to the state I was once in.

Don’t forget to check out Being me in my own skin and be sure to follow Alisha on Twitter, and Instagram.
Click here to read this month’s entire series which includes how I treat this condition.

 

 

 

How Aimee from Chronicwriter.net is Combatting Endometriosis

How Aimee from Chronicwriter.net is Combatting Endometriosis

Today Aimee from Chronicwriter.net shares how she treats her endometriosis.  Please remember that Aimee and I are not medical professionals and cannot give medical advice.  We are just sharing our experiences and opinions.  Check out Chronicwriter.net and be sure to follow her on Facebook, Twitter, and Instagram.

Warning: This post contains graphic photos from surgery.

I was diagnosed with Endometriosis after a traumatic 11-month battle involving numerous trips to A&E, hospital admissions and acute pain management. I received this diagnosis on my birthday; 16th January 2015 via a laparoscopy.  

My endometriosis was initially treated with excision during my diagnostic laparoscopy. My surgeon freed the adhesions from my organs and pelvis and removed the endometrial tissue. I was then advised to have the Depo Provera injection, which as a contraceptive would stop my ovaries from releasing an egg therefore avoiding a period, and the damage it caused. Within a month of having this injection, I knew it wasn’t for me. It severely affected my mood, which given my recent and life-changing diagnosis only caused me to feel desperately low. I didn’t have another injection when this wore off 3 months later. Instead, I was put on Cerazette, a form of contraceptive pill AKA the ‘mini-pill’. However, this didn’t seem to be strong enough to stop the bleeding and oddly, I began to spot/bleed every day. My doctor then prescribed Norethisterone in an attempt to stop the bleeding. So, at this time I was taking 4 tablets a day just to control my cycle and prevent a period.

 

After moving GP surgeries and finding a new specialist, I finally found relief with Zoladex injections. Whilst on the zoladex injection, my periods stopped completely and the pain abated. After a few weeks, I started to notice menopause symptoms, such as hot flushes and irritability, trouble sleeping. Although annoying, these symptoms were much more manageable than the severe pain I experienced during menstruation. However, it is not possible to conceive whilst on this treatment. Therefore, I decided to stop having the monthly injections, to try and conceive (naturally). It wasn’t long before my symptoms returned and the only treatment was to try and manage the pain as best as I could while trying to conceive. During this time, I had to have a 2nd surgery, which revealed multiple cysts and this led to having my right ovary removed due to a borderline cancerous cyst.  A year later, I’m still having severe pain, no sign of pregnancy and I have scheduled a nurse appointment to go back on the zoladex injections. I am devastated that I’m back to square one and my life seems to be falling apart again. But I am hopeful things will improve once I start the treatment.

Whilst on the zoladex treatment, my pain abated and my periods stopped. I was able to do more, and my quality of life improved. I’d gotten my life back, even if it was for a short time. I was so grateful to not be in pain every day. Without this treatment, my pain management includes Fentanyl Patches, Tramadol and Diclofenac, along with Cyclizine for sickness. This isn’t always successful, but there are no other options at this time. I also find that heat wraps, hot baths and a TENS machine can help.

 

Once I start the injections again, I’m hoping for a good few months to recover and rebuild my strength; I feel so drained. I’ve been battling pain for over a year now, whilst trying for a baby. My consultant has advised that it is unlikely that I will conceive naturally, and so will need to consider IVF. Which can coincide with the zoladex. It’s just IVF is so expensive and I’m not entitled to a free cycle with NHS funding.

Currently, I’m struggling to find some relief, even with my prescribed meds. I am on the waiting list for an appointment with a bowel specialist and the endo has caused my bowel to adhere to my womb. I’m facing another operation, to include surgical intervention on my bowel and to remove the active endometriosis. Due to the positive effect of the zoladex, my specialist has suggested that eventually, I will need to consider a full hysterectomy.

Don’t forget to check out Chronicwriter.net and be sure to follow her on Facebook, Twitter, and Instagram.
Click here to read this month’s entire series which includes how I treat this condition.
Looking for an affordable yet effective TENS unit? Check out my review of TechCare.

 

 

 

How Lori-Ann from City Girl Flare Contends with Psoriatic Arthritis

How Lori-Ann from City Girl Flare Contends with Psoriatic Arthritis

Today Lori-Ann from City Girl Flare shares how she treats her psoriatic arthritis.  Please remember that Lori-Ann and I are not medical professionals and cannot give medical advice.  We are just sharing our experiences and opinions.  Check out City Girl Flare and be sure to follow her on Facebook, Twitter, and Instagram.

 

My name is Lori-Ann Holbrook.  I am married, live in Dallas and am disabled due to my Psoriatic Arthritis.  That’s right, disabled.  Although I was only diagnosed five years ago, I believe I’ve experienced PsA symptoms as early as 25 years ago. 

It was tough to get to a diagnosis, as my symptoms would usually only present one at a time.  So, my initial diagnosis was obesity.  After we relocated from Atlanta to Manhattan, my immune system flipped out and I started experiencing all my symptoms at once.  I did not know what was going on with me.  I had lesions on my feet, could not straighten my right leg, was in pain all over my body and was exhausted all the time.

 Unfortunately, my doctor was forced to try step therapy with me.  Step therapy involved trying the least expensive treatment that MIGHT work, then allowing approval of a biologic treatment after failure of two to three other drugs.  First, I was on gold therapy.  This did not work and upset my stomach.  Second, I was on a sulfa drug.  This was so dehydrating I thought I was dying while out in the sun.  Finally, I was put on a biologic, coupled with a low dose of chemotherapy.  Over time, this biologic causes weight gain and, as I flared, I sometimes took steroids and opioids.  These caused even more weight gain that my biologic had to be increased to keep up with my BMI.

 In moving to Dallas and meeting with a new rheumatologist, I discovered I had been dosed for RA, instead of PsA.  The PsA dose is much higher.   Now, with the right dose, coupled with a higher dose of my antidepressant, my pain is under control and I’ve been able to wean off my opioids.  After a year and a half, I am finally feeling more like myself.  My biologic helps with pain and stiffness, my antidepressant helps with brain fog, depression and pain.

 I currently have no plan to change my medication, but there are new drugs coming down the pipeline for PsA.  What I really hope for is legalization of medical marijuana in the state of Texas.  I believe this would be more beneficial to me in the long run.  I hope, when the time comes, my rheumatologist agrees.

 

Don’t forget to check out City Girl Flare and be sure to follow her on Facebook, Twitter, and Instagram.

Click here to read this month’s entire series which includes how I treat this condition.

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