Category Archives: Knee Pain

I’m an AS Kicker. Seriously.

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Hello there. Life is good today. It’s Friday.

Wow, so much has been going on! I am happy to say that my stress is at an all time low currently. While this will most likely change in the near future, I’ll take it when I can get it. I have now been back on Enbrel for 5 weeks and I have finished my second  short-course of Prednisone. So much to update you on… let’s see…

1. This past weekend, Andrew and I ran the Rock and Roll Half Marathon. It was Andrew’s first. It was awesome. It was in Pasadena, California and we had an amazing time with amazing weather. Just perfect! I have definitely decided that running reduces my stress levels immensely. I plan to continue doing it. It also helps that running temporarily reduces my AS symptoms.

2. We finally got our new kitchen set-up. This makes me happy because we can cook and we have been and it’s been delicious and awesome! Next step- the rest of the house!

3. Voltaren Gel– it seems to actually work. My knees are still not 100% but the gel does seem to be helping my knee pain a lot. I will continue using it for sure… plus! No cortisone injections!

4. Enbrel– while my pain is not gone, my fatigue has vastly improved over the past 5 weeks. For instance, it is now 2:30 in the afternoon and I am still awake… and all I had was a large green tea today (in the caffeine department). 5 weeks ago at this time I would have had 2 caffeinated sodas, 3 cups of coffee, and a cup of iced tea and I’d still be falling asleep. I am thanking Enbrel for these things.

5. Prednisone– it did seem to help with the pain and kind of jump start the Enbrel working. As you may remember, I was having terrrrrrrrible heart burn. As a result, I went on a 14 day course of Prilosec which I have just about finished up. It has worked wonderfully and my heart burn has died way down. thanks, Prilosec!

6. We signed up for our CSA again! I am super excited— I love going out to the farm and getting fresh produce and cutting fresh herbs. I see lots of food blogging in my future!

7. Finally, we found someone to take over the lease on our apartment— so no more double rent paying!!!! Such a good feeling! This took a TON of stress off of both Andrew and I.

Yes, life is good right now. Calculus is still there and still needs tending. Hopefully after we unpack this weekend I can buckle down and get it done. It’s about time!

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Voltran Gel for Osteoarthritis

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Voltran gel. So, it’s not really called Voltran, but it’s close, so that’s what I’m calling it. On Wednesday, I got to meet with my Rheumy for a much anticipated appointment. Over the past two months, as you know, I’ve been off Enbrel and not visiting my Rheumy because of a Lyme’s Disease and Mono diagnosis. I was really worn down, frustrated, and stressed out when I showed up. The nurse who is always there and works with me (the same one who taught me how to use Enbrel) put her arm around me and led me back to the exam room. She asked me how I was doing and I was completely honest with her. She was so understanding and wonderful. She told me to take a deep breath and said that we’d figure it all out. My pulse was good (72 beats a minute), but my blood pressure was up. The last few times I’ve gone to the doctor it’s been elevated which is weird because usually it’s low and everyone is always telling me how wonderful it is.That’s for the next post.

So anyway, I got my long-awaited and needed direction from him; I can go back on Enbrel! This morning I took my first injection in over two months. It was funny because this time my mentality was, thank god I get to take it, rather than ugh another injection. It made it much easier. So basically the Rheumy said we’ll give the Enbrel two more months and if it doesn’t help, we will try something else. I’m hoping the Enbrel works. He also said that if I don’t feel any better next week to let him know and he’ll probably put me on a short term course of steroids. In addition, I will continue to be on Nambumetone and hopefully that  coupled with Enbrel will do the trick.

Then he turned to my knees. I had complained about them before and how it hurts to be in the car too long, they hurt when I walk, etc. He re-examined my xrays and poked and prodded the knees for a bit and said that it appears to be osteoarthritis and that my bursae are puffy and swollen (inside of the knees). He said that he could give me cortisonal injections (to which I made a face… more injections?). He smiled and said we would try a topical osteoarthris gel first. You 2g of it on the spots of pain/tenderness 4 times a day. The gel, Voltran gel, as I affectionately call it, is another NSAID (as is Nambumetone). I’m hoping the gel will work.

So that’s about where we are. I go back in a month to follow up and get blood work done again. In addition, if nothing improves by next week, I call and go on steroids. Here’s hoping I feel better next week!

Thought for the Day:

Feeling Awesome by Work Out and Crappy by Anything Else

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  Say hello to work out Meghan. Running (well, “running” but it’s not walking, so who cares how many miles per hour it is?) with the breeze blowing through my hair, one foot after the other, busting out an uphill gain (Ok, so it’s only 50 feet, who cares?) while I’m doing a little dance move with my hands to Pink’s “Raise Your Glass.” Perfect. Seamless. True, legs are a little sore, calves still haven’t completely adjusted to the new vibram five fingers or the torturous cold air 4 mile jog that I am putting it through. Yes, my knees are a little rickety and at a time or two I slide ever so gracefully on a small patch of black ice. Yes I am absolutely covered in sweat from head to foot because for some unknown reason, I perspire 1000000000% more than the average human being.  Yes, my earbuds slide out every few minutes because apparently my ear holes aren’t properly formed for the latest Sony bud covers. Yes, my spandex pants are a little too tight, thus accentuating parts of me that I’d like a little more toned. Yes, I’m breathing through my mouth, gently wiping slobber out of the corners of my mouth and off my cheeks. Yes, I MAY EVEN BE mouthing or heaven help us, SINGING OUT LOUD to the song on my shuffle. But, don’t I look happy? I am in my element. I am doing it. I have AS and I’m out of shape and I’m running. And I like it. I even got Andrew out there running with me and putting up with my crazy routes. My butt feels NO pain. Take that SI joints, I have found a way to mute you. Take it! My lower back feels like I have brand new vertebrae of flexible steel. I don’t know if it’s possible, but just imagine it is. My muscles are relaxed and I feel like I could fly.

That’s work out Meghan. Now meet Meghan at any second of the day when she is not working out.

Meghan is broken. Meghan is in pain. Meghan is exhausted. Meghan is ready to throw in the towel. Imagine your neck and back and butt being steam rolled, spat on, and steam rolled again. That is Meghan on no Enbrel and not in work out mode. It could be an hour after working out, it could be in the morning before working out, it could be on a “rest” day. This Meghan is evil. She feels like crap, she is groggy. She feels like she has been up for 5 days straight. She wants a vacation.

 

How is it possible to be both Meghans? I’m not sure myself, but trust me, I know it is! I don’t get it. It exhausts me to start thinking about it (not currently working out). I try to figure out how I can feel so wonderful exerting energy that quite frankly, I don’t even know that I have in me. Yesterday, I did NOT want to get up. I knew we were supposed to run 4 miles and I wanted to run 4 miles but I didn’t want to get up. I hit snooze a couple times. Andrew got up and got ready and then came back into the bedroom. It took everything I had in me to get out of bed. Once I was outside, I felt a little more awake but really sore. I remember thinking to myself, there’s no way I’m going to be able to run 4 miles. But you know what? I did… and I’m not sure how- but I do know that during those 4 miles I felt invincible. So I guess my question is, is it possible to work out all day? Because if I could, I would. If that’s the only way to get relief, I am. in.

Next Monday, I have an appointment with my Rheumy (FINALLY!). I’m really hoping that he gives me the go-ahead to get back on Enbrel. Please cross your fingers– I think if I can go back on, I will start to feel 1000000% better!

 

PSA: Peas Cold Therapy

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Since I’ve been spending the bulk of this past week checking on and hanging out with Andrew as he works through his surgery, I realize I haven’t posted anything regarding AS in a few days. Yesterday, I went off to CVS to pick-up my next round of Enbrel injections. As you may recall, I’ve been having strange injection reactions but my Rheumy wanted me to continue on the path of Enbrel and not give up quite yet… so I am being patient. Next week I have a follow-up appointment with the Rheumy to see how things are progressing and where we will go from here. I still need to schedule my physical therapy and I definitely am planning on asking about the pain/tingling in my fingers and wrists as well as my swollen ankles, which have been making themselves ever present more recently… particularly on my left ankle, where I had surgery.

Regardless, back to my trip to CVS. First off, I again owed nothing for my Enbrel perscription! Thank you federal employee Blue Cross Blue Shield and Enbrel Support! While I was at the store, I wanted to look for some sort of ice pack that I could use on my knees. It is quite difficult to do routine activities while tryng to hold an ice pack on your knee, so I wanted something preferably with a strap. That is when I found peas cold therapy. They have a variety of ice packs for different body parts and most important to me, they have knee packs. These circular ice packs have straps on them so you can simply freeze, place on the knee, velcro the straps and go or sleep or do what you need to. I will say that the ice packs are convenient. They are filled with little gel balls so there is nothing poking you. They flex and form around your knee. The packs is generally comfortable. I will say that my one downfall to this ice pack is that it didn’t seem to last for an exceptionally long time. I found that after an hour or so I needed to throw it back in the freezer… but, at least it worked for that hour!

Anyway, I figured I’d share with you– it cost about $16 and you can purchase them online or in the CVS stores. I saw on their pamphlet that they also carry a wrist ice pack and a lower back ice pack. I plan on purchasing these… Unfortunately, they don’t have adult ankle wraps, only youth ankle wraps, but perhaps in the future!

Has anyone else tried out this ice packs before? Are there others you like?

Today I Ran a Half Mile

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Yes, you read correctly. Today, I ran one half mile. No, it’s not as glorious as a 5K, 10K, half marathon, or heaven forbid, a full marathon, but it was progress and I’ll take it. At my one month mark of being diagnosed with Ankylosing Spondylitis, I proclaimed that I will be running the Rock N Roll Half Marathon next February in Pasadena, CA. Well, I have to start somewhere and today, that start was one half a mile.

For those of you who have ever completed a marathon, first off props to you- it is a great feeling to be in that special group of 26.2-ers. Someday, perhaps I will get back there again. Regardless, remember that feeling you get around oh mile 21? That oh my god, I am literally dieing there is no way I can put my left foot in front of my right foot again- every muscle is tearing and my bones are gone feeling? Well, that is what I had during my one half mile sojourn today. Now, don’t get me wrong, part of that is due to the fact that I haven’t trained in months. The other part of course, is my near and dear friend, AS. But such is life.

Tonight I lay in my bed with aching wrists, ankles, knees, hips, heels and a lower back. My body feels like I was accosted by a group of people with baseball bats. I voiced to Andrew that I hate the feeling of feeling like crap and I feel so frustrated sometimes and just like my body is completely giving up on life. And yet, as I sit here typing this post, I can’t help but smile knowing that today, not only did I get to go on a 7 mile walk with the love of my life and our bestest dog, Franklin, but I actually ran (ok, jogged, whatever) a half a mile.

I am well on my way. Today was a great Fall day and I wouldn’t have changed it for anything.

Trials and Tribulations of Enbrel

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As you may recall, I went to my Rheumy two weeks ago on Wednesday during which appointment he prescribed me Enbrel. That day they submitted the prescription and told me that it would need to be pre-approved by my insurance before it was filled so they would let me know when that process was complete so I could pick up the prescription. A week later (this past Wednesday), I called regarding my uncontrollable itching and also asked about the medicine. They nurse said call on Friday if you still haven’t heard anything. Mind you, I’m leaving on Monday for 8 days in Denver for work so I NEED more enbrel.

On Thursday afternoon my Rheumy called me to check in. We discussed the itching and the lack of pain relief in my knees, hips, and back. He told me to take Zyrtec, Benadryl (at night), and to switch to Nambumetone rather than Meloxicam. So, he sent in those prescriptions. I then brought up the Enbrel- he told me to talk to his secretary about it to get it figure out. The woman I spoke with was very nice, however she said “it looks like you didn’t need pre-approval, just go to the CVS and ask them for the prescription. If they won’t give it to you, let us know.” Rather than showing up like a crazed drug addict, I decided to call. After putting me on hold for about 20 minutes, the pharmacist came back on and said there was never a prescription sent over for Enbrel. awesome.

I called the doctor back and after being put on hold explained the situation. She put me on hold again and then came back stating that she was sorry and it never was sent over, the woman with her was on the phone with my insurance currently and it would be taken care of immediately. I then went online to Enbrel Support to register some extra insurance card thing. It’s unclear to me what it is besides subsidies for Enbrel. I don’t know who pays for it (probably tax payers?) or why I get it, but I do, so I tried to register. It sends you through a variety of questions and asks for contact information and then you hit submit. Easy enough- I already had a card from my Rheumy with an ID number. OF COURSE, the site crashed three times.

Finally I gave up and called the 1800 number. I basically spent 45 minutes on the phone with a guy who although very nice, seemed to now know what he was doing. Even though I explained that I had a card already and had just started taking Enbrel, he continued to ask me over and over how many years I have been on Enbrel and if I was just trying to renew my membership. 45 minutes later, he assigned me new numbers and a new card (god only knows when that will get here). The upside: I was able to use the numbers without the card.

I went to CVS to pick up the prescription. After a little wait the pharmacist brought out the Enbrel from the refrigerator (yay!). I handed over my temporary Enbrel support card and he looked very confused and then told me I would have to wait. Fine. About 20 minutes later, they called my name. I’m not sure what they did or what black magic they used, but bam! I had Enbrel! The even better part? IT WAS FREE! No, seriously. I didn’t have to pay one cent for FOUR injectors. I’m not sure why or how, but I will take it.

Down-Side: About 2 full days of my life wasted trying to get a prescription of Enbrel
Up-Side: Four injectors were free

Giving Yourself Enbrel at Home:
In case you’re wondering what the process is like… this is the set up along with the steps you take to successfully give yourself a shot.

 

 

1. Gather Accessories Andrew’s sister-in-law mentioned that it is less stinging if you take the Enbrel out and let it warm up for about 10 minutes. So I tried that…

2. Wash Your Hands– didn’t take a picture!

 

 

 

 

 

3. Swab the Injection Area with Alcohol Swab– note to self, remember WHERE you swab or you will have to do it again. Also, let alcohol dry BEFORE injecting (less stinging).

4. Remove the White Cap from the Injector– the white cap is what covers the needle. I use my teeth to pull it out- works better when you are trying to do too many things at once.

 

 

 

 

 

5. Pinch Area of Skin Where Giving Injection and Hold– this is weird. My doctor told me to do this, although the directions in the kit say to stretch the skin. Either way, I’m sure it is painful.

6. Ensure there are Not a lot of Extra Air Bubbles in the Liquid- They say to do this, but honestly, the more you tap the little liquid, the more bubbles that appear…

 

 

 

 

7. Push the Injector Down Hard- I’m pretty sure the reason is this pushes the needle into the skin. Surprisingly enough, I’ve found myself freaking out with anxiety over the impending stinging of doom that I can really feel the needle. Oh, in addition, the window viewer should be facing you so you can see the liquid draining (I don’t pay attention to the window, usually my eyes are closed and I just listen for the second click).

8. Press the Blue Button on Top- Stinging commence. No really. A lot of stinging/burning. Awesome. When you press the button, you hear a click. The liquid starts to go into your thigh. It feels a lot like a bee with a long stinger that is pushing the stinger deeper and deeper into your leg. You wait. A. really. long. time. Then it clicks again, signally that you are done.

 

 

 

 

9. Remove Injector and Discard into Sharps Container- I’m not really sure what to do with the sharps container once it’s full, but apparently Enbrel Support will give you a new bigger sharps container. Cool, right?

 

 

 

 

 

 

10. Use Gauze to Stop Bleeding and Cover with Mini Band-Aid-Not much bleeding this time! And you’re done!