Rheumatoid Arthritis

The Gupta Programme

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in now way influenced by the company.

The Gupta Programme is a three month program that includes a variety of materials. The program is designed for patients with ME/CFS, Fibromyalgia, and/or MCS. I can attest to how it helps with Fibromyalgia and with the pain and stress my other chronic illnesses cause me.

Overall, I found the program to be all encompassing- it allows learners of all types to get the most out of this program. The program includes the following:

  • DVDs which contain fourteen training modules and over 18 hours of interactive video training modules
  • A comprehensive manual which includes transcription of the DVDs, worksheets, and course handouts
  • 2 audio CDs comprised of breathing and and meditation techniques
  • access to live online coaching and the ability to watch them at a later time if needed
  • a large floor chart/map to assist in retraining your amygdala
  • access to online forums, a facebook group, etc.

I did find it helpful to use the “Stop, Stop, Stop!” method which is that when a negative thought starts to enter your conscious mind, you immediately state the word stop, three times. When I get a feeling that my disease is becoming too much, when I’m feeling overwhelmed and start to think negatively about how my life will go on with this disease, how tomorrow will be awful, etc..this method does help to stop myself from focusing on the future and return to the present.

As a patient with multiple illnesses- Rheumatoid Arthritis, Type 1 Diabetes, Anxiety, and Fibromyalgia, some of the negative thoughts that you try to remove are surrounding anticipating symptoms getting worse, not being able to function/cope with situations or tasks. I have tried to retrain my thoughts to be in the moment, to focus on today. Part of that does include making sure I have energy and low levels of pain so I can enjoy my entire day, not just the early part. It was hard for me to identify with the goal of removing these thoughts from my conscious mind. In order to continue to work full time, care for my family, I unfortunately have to be aware of how I’m feeling, so I can adapt if needed.

My overall opinion is that if you are suffering from one specific illness, an illness that could possibly be cured or easily go into remission, this program might be helpful for you. If you are constantly thinking negatively about your future, about what your disease has done to you, and if these thoughts are consuming you, you may benefit from this program. Anything that helps us to think more positively and helps train our brains to think this way without a conscious reminder, is helpful.

I am a firm believer in that positive thinking promotes positive results. Anything that you can do to make yourself focus on the positive is helpful in my opinion. If you’d like to learn more about the Gupta Programme, click here. Considering the program does offer a money back guarantee, you may find it worth your while.

 

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Rheumatoid Arthritis

I’m tired.

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This morning I went to the ortho to follow-up on my shoulder and knee. My shoulder isn’t better even after an injection two weeks ago. My knee pain is some of the worst I’ve ever felt in my life. Last night it took three hydrocodone pills, ice, elevation, and plenty of tears to get my pain manageable. Earlier this week I called my new rheumatologist’s office to see if they had any cancellation spots, for the millionth time. She’s out of the office this week, so that little glimmer of hope got annihilated. I now have to fit Physical Therapy into my life to try to get my right knee strong enough to have surgery on the other knee.

I’m tired. I’m tired of taking countless doses of pain medication. I’m tired of taping my joints into place every day. I’m tired of swollen, gross looking hands. I’m tired of being nauseous from the cocktails of medication flowing through my body. I’m tired of limping. I’m tired of wearing compression garments and braces. I’m tired of injecting methotrexate and the hair loss and canker sores that come with it. I’m tired of seeing a doctor of some sort every week, sometimes more than one appointment each week. I’m tired of xrays and MRIs that show damage that I can’t change and that’s occurring right now in my body while I wait for a rheumatologist to see me. I’m tired of spending money on this disease in the form of copays, prescriptions, tape, medical bills. I’m tired of all the tears.

I don’t see any light at the end of the tunnel. I see pain and tears. I miss my life without this disease. I am finally mourning it after five years and I’m worried this mourning period will last a long time.

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Type 1 Diabetes

Fingersticks for everyone!

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My Continous Glucose Monitor (CGM) transmitter has died. It was only meant to last a year or two and we have been together for three and a half years. Medtronic is working with my doctor and insurance to replace it. In the meantime, I’m back to fingersticks all day, like some sort of caveman. 

No big deal, right? Wrong. I have become so dependent on my CGM that I truly don’t know how to comfortably live with diabetes without it. 

I have diagnosed anxiety that is typically managed pretty well with medication and mindfulness. Until my CGM stopped working. I found myself feeling so panicked throughout the day. Was my blood sugar plummeting? Was it rising? Did I take enough insulin to cover lunch? Did I take too much?

I pieced it all together today. Growing up, my father had Type One Diabetes as well. My father had quite a few (a lot, honestly) of low blood sugars where he needed assistance. He needed my mom to mix sugar into orange juice and force him to drink it. He needed ambulances. He bit through his tongue once in a bad low, there was blood all over him. I found him one time, passed out at our kitchen table, while the sausage he was cooking for breakfast filled the kitchen up with smoke. 

I learned early that lows are scary. And lows are embarrassing (cue the memory of the only time I’ve needed medical assistance- passing out in the shower as a 16 year old). And I am terrified of going low, especially in public. 

This short break from my CGM is definitely unwanted but, maybe, just maybe, it’s good for me. Maybe a few days of going to the grocery store, going to work, just living without looking at my blood sugar every five minutes, will be good for me. 

It makes seeing a number like this pop up, even more wonderful than usual. 


But don’t worry, I’ll still be stalking my UPS package online, while not pricking my finger every five minutes. 

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Rheumatoid Arthritis

I Did Something Crazy

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This weekend, I did something crazy. Instead of fighting against Rheumatoid Arthritis, I let it win. I let my body rest when I felt tired, I went out when I felt good, ate when I was hungry, and worked when I felt inspired. And I took pain meds when I was hurting. 


I did a lot more resting than usual. Any other weekend, I would have gulped caffeine and pushed on. There would have been tears throughout the day- from the pain, from the exhaustion. But not this weekend. 

I typically push through my errands and cleaning. I am usually in an excruciating amount of pain, limping up the stairs, finding laundry to be torture. This weekend, I spaced the laundry out. I did one errand each day, rather than all at once. 

Speaking of pain, I usually don’t take my heavier pain meds until the end of my day- until my list is done. As if I need to earn them. This weekend, when the pain started, I immediately took my meds. I didn’t hit any excruciating levels of pain the entire weekend. I actually said to my husband “it’s amazing how good I feel when I actually take my pain meds”. It was probably very hard for him not to say he told me so! 

I am going to try my best to stop fighting my body, to stop being disappointed in what it can’t do. I am going to try to listen to it and not view myself negatively. It may take me longer to get laundry done and I can’t make a homemade meal every single night but I’m not a burden and neither is my body. 

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Rheumatoid Arthritis

Hands

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Since I was born, my Grandmom frequently told my mom, and later me, that I had beautiful, long, slender fingers- perfect for playing piano (I chose the trombone in middle school haha). 

Fast forward quite a few years. For awhile now, my left hand has always more swollen than my right and I usually don’t think much of it. Well that’s not true. I often notice how huge my fingers are, how the veins protrude. I notice my hands all day long- while I’m driving, working, sitting on the couch. 

I had my fourth infusion yesterday- this was an important one. If I don’t notice marked improvement, it’s time to move on to another biologic. I found myself checking every part of my body, looking for some sort of progress. Turning my head, bending my knee, etc. I checked my hands and noticed this:


No matter how hard I try, I cannot bend my left ring finger down any more than this. To bend it this much hurts pretty bad. Is it a huge deal? Not really. I can still use my hands, I’m not limited. But it scares me. It scares me because if you’ve ever googled Rheumatoid Arthritis, you come across some frightening looking hands. Some painful looking hands.

I’ve only had Rheumatoid Arthritis for five years, this month and I would like to have many more years of using my hands. They have a lot of writing, knitting, hand holding to do. 

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Hope Rheumatoid Arthritis

Grateful Body

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I have had a Get Fit Book in my drawer for over a year. It got depressing to use because my body, especially my joints, is a constant source of disappointment.  My body doesn’t move the way I want it to, when I want it to. It’s required multiple surgeries, constant medication, and is completely unpredictable. 

I pulled out my fit journal tonight and prepared to throw it away. And then I thought about it. I’m constantly trying to stay positive, to find hope, to see the good in everything. This journal can help me with that. 

Today’s entry is real. I did not move today and guess what I ate? Pizza. Why? Because I injected methotrexate this morning and only moved from the couch to refill my ginger ale. And at 6pm when I realized I had only had a few saltines, a piece of pizza sounded good. 


I’m going to try my best to use this journal every single day. Not just the days that I exercise or only had veggies to eat. I need to celebrate what my body can do, rather than always being disappointed with what it can’t. 

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Family Hope

Regret

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You’ve heard it before “make sure you tell someone you love them, you may never see them again”. I make sure I say “goodbye” and “I love you” to my kids every morning and night. If I died tonight, they would know I loved them. Not because I said the words often. Because they felt it. They know just how important they are to me, they know that I would do anything for them.

But that’s not true with everyone in my life and I think it’s safe to assume that it’s not true for you either.

I lost my dad almost two months ago. My dad and I had a rocky relationship- he battled with anger and alcoholism my entire life. And even though his actions and words didn’t always say it, I know deep down that he loved me. I know that had I ever truly needed him, he would have done everything he could to help me.

But did he know that I loved him? I don’t know for sure. And that hurts. And at this point, there is nothing I can do about it. But (there’s that word again) I can do something to ensure that I don’t end up feeling regretful again. And you can do something too.

My challenge for you this upcoming year is to really let those you care about, know it. If you’re thinking of someone, tell them. Whether it’s your best friend from middle school that you haven’t seen in awhile, your neighbor, or your Mom…tell them. Social media makes us think we are connected. Just because we’re friends on Facebook and we “like” a status every once and awhile, doesn’t mean we have a strong relationship. Go one step further. Simply sending a text, message, or email that says “Hey- I’ve been thinking about you, hope you’re well” is a great start.

I promise, you won’t regret it.

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Hope Rheumatoid Arthritis

Validation 

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A few hours ago, I spoke with my rheumatologist about this nasty flare that I can’t seem to kick. We agreed on the cause, my father’s death recently, but we’re at a loss as to what we could actually do about it. 

My pain management doctor had me do a course of steroids which, for the first time ever, made no difference. My allergies and asthma were fantastically controlled but that was it. My joints remained swollen, the pain continued to be intense, my temperature still rose, and my fatigue was just as debilitating. My rheumatologist agreed that I had taken a high enough dose where I should have felt and seen a difference. 

We also agreed that it was too soon to throw in the towel with Simponi Aria infusions. Having my last infusion the day before my father’s funeral wasn’t a bad idea as I had thought. My rheumatologist said that it would have done something regardless of the state I was in emotionally. But alas, it did not. 

I’m going to proceed with my next scheduled infusion, the first week of January. If that doesn’t work, it will be time to consider Remicade. 

So if I can’t take prednisone again and I’m not ready to switch biologics just yet, what can I do? Not much. I’m going to inject the maximum of methotrexate this weekend (going from .8ml to 1ml). I’m going to try my best to rest- hopefully with my doctor ordering me to to take it easy, I’ll feel a little less guilty about doing so. I’m going to continue to take pain meds all day, every day, and maybe get a joint or two injected at my next pain management appointment. 

Most would have been disappointed after having a similar conversation with their doctor, but I wasn’t. I felt validated- my doctor trusted me to share my current health status accurately without an in person visit. She told me I was doing the right things and gave me hope that I would be on the path to feeling better soon.

If you’re a provider reading this, please know that as patients we know you can’t fix everything, every time. But just hearing us out, telling us that we’re doing a good job, is sometimes enough to encourage us to keep up the fight. 

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Rheumatoid Arthritis

Live like you’re dying

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The meaning behind “live like you’re dying” is usually to live each day to the fullest as if it will be your last day. But that’s not what I’m referring to. 

This past month has been particularly rough for me. Losing my Dad at the beginning of November, set my body into a massive flare. If I’m being honest though, things haven’t been going that well for awhile now. 

This is my life:

Mondays- longest, busiest day at work; when I finally get home, I put together a quick dinner for my kids and am asleep by 8. 

Tuesdays- I wake up exhausted but power through my morning. Pain is bad but manageable. I try to go to the gym after work which sometimes goes well and other times, I barely make it 20 minutes. I usually have to hit the grocery store before heading home. 

Wednesdays- Pain is pretty bad at work. I find myself promising myself that if I make it through the day, I’ll take off Friday to rest. I usually make dinner (or ask the kids to throw something together) and get in bed at 8, even 7:30 sometimes. Heavier pain meds are mandatory. 

Thursdays- Always a ponytail day as my arm can’t support the blow dryer in the morning. I’m in pain immediately upon waking and usually start my day with a fever. Work is hard- cheeks are feverish and bright red for most of the day, the pain can cause me to fight back tears in my office. I have usually packed my gym bag the day before but there is no way I can go today. I make it home and take pain meds the minute I walk in the door. 

Fridays- Everytime I arrive at work on Friday, I’m so proud of myself for making it this far. The fatigue is at its highest point, multiple energy drinks keep me from sleeping at my desk. I keep telling myself that I just have to make it one more hour and then I can leave early. I promise myself this until the day is done. I finally make it home, needing to go to the grocery store but I physically can’t. I take pain meds as soon as I’m home and hit the couch. There are a lot of tears involved- from pain and from sheer disappointment in what my life has become. 

Saturdays- Target and the grocery store with my daughter. I am back on the couch by 1pm to sleep away the afternoon. I inject methotrexate around dinner time and am usually back asleep by 8. 

Sundays- Recovering from methotrexate. Trying not to vomit and trying to stay awake- usually asleep until mid afternoon when I’ll make dinner, do my pills for the week, pack lunch for the next day. All to be back in bed around 8. 

This isn’t living. This is dying. This is struggling to literally meet my own basic needs and those of my family. I love to cook. I love new recipes. But I can’t find the energy or enough pain free moments to cook much anymore. I miss knitting. I miss bowling. I miss the gym. I miss just having energy. 

I am so tired of hurting. So tired of being tired. I am on my fourth biologic in just under 5 years of battling Rheumatoid Arthritis. I’m losing hope that there’s something better out there. That there’s something that can help me. 

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Favorite Things Rheumatoid Arthritis

A Glowing Review for the Oska Pulse

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in now way influenced by the company.

To say I was skeptical when I first saw the Oska Pulse would be an understatement. How could a little, glowing, UFO looking device, help my intense, chronic pain from Rheumatoid Arthritis? In short, it could and it did.

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For over 60 years, PEMF signals (Pulsed electromagnetic fields), similar to those in the Oska Pulse, have been used to treat pain and edema in soft tissue. It’s been established that tissues, including blood, muscle, ligaments, bone, and cartilage respond to biophysical input. Where there is better blood flow (circulation), better structure, and turnover of old structures, significant improvement is possible. The signaling processes of the Oska Pulse are wide enough to respond to the majority of pain experiences and to help the body start its natural internal recovery processes. There are multiple scientific clinical studies that demonstrate the pain relief effects from PEMF signals, click here to learn more.

In short- pain radiates from a damaged area of the body and that same area then exhibits inflammation. When PEMF is applied, your body is stimulated to repair and renovate the damaged area. Immediate relief is delivered by reducing inflammation and long term relief is delivered from the repair mechanisms your body implements while using the Oska Pulse.

 

What do I think?

  • It’s simple. I can’t think of a device that I literally just put on the area I’m feeling pain in (over or under clothing) and touch a button to get started. I don’t have to dial up intensity or go through a series of prompts or buttons to get started.
  • The strap is fantastic. I have used my Pulse for the past few months and the strap hasn’t started to show any signs of wear and tear. Unlike some Velcro straps that seem to fall apart and have threads pulling out almost immediately, this strap seems to be very well made. It also securely holds my device, I’m never worried about it slipping off. The strap is long enough that I can wrap it completely around myself to hold the Oska Pulse on my hip but it’s not too bulky when I wrap it around a smaller joint, like my elbow for example.
  • The device is quiet- no buzzing, no continuous beeping. Simple beeps allow you to know that the device has turned on or off.
  • Most importantly, it works. I have noticed that I have a larger range of motion in joints that I use the device regularly on. I have less pain, especially when I use the Oska Pulse prior to or after things that cause me discomfort. Driving is especially painful for me but my shoulder and knee pain are dramatically reduced if I use the Oska Pulse during each commute.
  • It’s portable- I have used my Oska Pulse in my car, at my desk at work, on an airplane, laying in bed. It’s easy to use anywhere!

 

What could be improved upon?

  • Length of treatment. It would be nice if I could set my device to do more than one treatment without having to turn it back on. Thirty minutes can go by fast and I’d love to see how much benefit I would get if I was able to wear it continuously overnight. But you really can’t beat hitting a button one time to get a new treatment started.
  • The lights. Ok, I love the lights. I love the blue light and think it’s so unique. But- it can be distracting if you wear it on your shoulder while driving at night, for example. Or if you’re trying to secretly use it- that’s not very easy to do.
  • A carrying case. The button on my Pulse can be very sensitive at times and just jostling it in my work bag can cause it to turn on. It’d be nice to have some sort of hard sided case to protect it from turning on accidentally and wasting battery life.

If you’re debating on trying the Oska Pulse for yourself- let me remind you that the device is backed with a 90 day money back guarantee. A guarantee that includes all taxes, shipping, and a return label to ship the product back to their factory if you aren’t fully satisfied. And, if you enter my code “ATJAX” at checkout, you can save 5% off your order! Click here to visit their site!

 

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