Wednesday, December 17, 2014

Almost there, for now

Things have been slowly declining with my osteoarthritis. It kind of just snuck up on me really. A few weeks ago I partially tore my rotator cuff on my left side. The ER doctor gave me a sling  to wear during the day. Then some pain meds to take so I could get some relief and sleep. I'm not gonna lie. It was amazing. I had no pain. I was able to rest and my shoulder is healing great. I'm doing the exercises I learned in physical therapy from the first time I tore this back a few years ago. 

When I say I had no pain I mean NO PAIN. My knees felt heavenly. At one point a went down to take a nap and instead just laid there. I wanted to be awake. I wanted to soak in this new feeling.
After a few days I was off the pain meds. While my shoulder was just bothersome, my knees were killing me! I couldn't stand, walk, use stairs, or sit with my legs bending without extreme pain. I dusted of my walker and crutches. On Friday I got out of my sisters car. I was walking like a 90 year old and she said "ok you are calling your doctor now. Something isn't right."

Tuesday (which is today) I had x-rays and an appointment with my orthopedist first thing in the morning. My OA is declining and something is up with my "good" knee. The knee I had surgery on. Both knees were very swollen and inflamed. My doctor took one look and said "what the hell happened?" 

After some talking he came to the conclusion that my good knee is compensating for the pain and lack of function in my bad knee. My doctor drained about 25 ml of orange fluid from my good knee and gave me a shot of cortisone. Usually in the past I would get an injection of Synvisc in my bad knee,  a synthetic gel to take the place of cartilage temporarily. Aetna, my insurance, stopped covering this. My only option was to receive a cortisone shot which most of the time doesn't work, and push my surgery on the bad knee to be as soon as possible. Oh and he thinks he is already booked for January. 

I'm trying to look on the positive side and think that I am almost there. Almost to the end of this knee saga. 24 months down, 10 to go. I'm working hard not to be discouraged. I can do this. I know I can. For tonight...pity, party of one.

For those that haven't checked out our new online magazine and support group for all things arthritis click on the links below.

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Saturday, November 22, 2014

Life is Good

It's no secret the last 30 days have been challenging. My family and friends have made me feel blessed once again. With their support I have overcome. I love the direction my life is going.

Let me paint the picture for you. Kara (my sister) and I were up in the Berkshires for some much needed R&R. We go to dinner at this cute little Mexican place. Sipping on margaritas and eating ridiculously good food. The smell of lime and cilantro in the air. Enjoying the escape and the weight lifted off our shoulders.

The moment came upon us. It was right. I hand Kara my phone. She hits the button. Just like that we launch our online magazine's first edition. We clink our glasses. It's amazing how things just fall into place organically when you are on the right path.

With that said, I give you the link to our site!

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Saturday, November 1, 2014

When a Door is Closed

It's been a crazy few weeks! I'm thinking maybe it's time to let you all in on what I've been doing.

As you know I am the founder of Squeaky Joints. 5 years ago it was my Arthritis Foundation walk team name and has been every year since. A little over 3 years ago I met a woman online and we discussed the lack of support, at the time, in communities and on social media. The next day I created a FB support group and added this woman as an admin and together we would run Squeaky Joints the support group. 

Fast forward to Oct 11, 2014. Squeaky Joints was growing with 8,700+ members. I asked the other admin about some questionable things that were going on. Unfortunately it wasn't taken so well. I was deleted and blocked from the support group. Since then I have kept pretty tight lipped about this and have been bashed all over social media by this person and harassed with messages and threats. I think the worst part is all my members thinking I left voluntarily. That I abandoned them when that's the complete opposite of what went down.

Now on to the good news! I have been blessed with so much love and support from my friends and family. So many have rallied behind me making something that should have been hard that much easier. 

Knowing that there are still people in need of support I wasted no time in getting a new group and a new brand up and running. It is with great pride I introduce to you Arthritis Rebuild. A safe haven to get support without judgement. Within a week of opening we had 400 members. The visions and the possibilities I have before me are endless.  A few weeks in and the logo and website are almost done. We have a some great people that we are calling The AR Administration Leadership Team. They will be helping out with some side groups I have put in place. A place to show off crafts, share recipes, fellowship, fitness, and saving money. 

This is an exciting time and I am happy to share the news with you. Had I been holding on to the loss of Squeaky Joints, my hands would not have been free to open this new door! I'll keep you posted.

Please come check the group out. All are welcome!

Thursday, October 30, 2014

1 year anniversary

Tomorrow marks the 1 year anniversary of my botched surgery. I'm still having the abdominal pains and no one knows why. The stabbing pain in my right side didn't go away after my hysterectomy. Tons of CT scans, an endoscopy, a colonoscopy, an ER visit, and tons of doctors appointments later I am at a loss. It may be just a super tight adhesion. That's the part that makes me mad. Another 40+ years with this pain doesn't sit well with me. 

So off I go, to my team in Boston. Praying that they figure this out. Wish me luck!

Saturday, October 25, 2014

Think outside the box!

A hard part of RA is not being able to do the things you once did. For me I struggled before my work with the Arthritis Foundation, the group, and starting my blog. I had just quit my job at the pharmacy because I couldn't open the pill bottles and I had to walk and stand a lot. I loved to help people. I felt like a failure not contributing to society. Below is an excerpt of something I came across today.

[A woman named Nancy put this ad in her local newspaper: “If you are lonely or have a problem, call me. I am in a wheelchair and seldom get out. We can share our problems with each other. Just call. I’d love to talk.” The response to that ad was surprising—30 calls or more every week. What motivated this woman to reach out from her wheelchair to help others in need? Nancy explained that before her paralysis she had been perfectly healthy but in deep despair. She had tried to commit suicide by jumping from her apartment window, but her fall left her paralyzed from the waist down.]*

For those of you struggling with the loss of your physical ability I encourage you to reinvent. Think of how you can get that feeling back. The feeling of doing something you loved. Approach from a different angle. Do some brainstorming. Rekindle that fire in you. I dare you!

*Vernon Grounds~YouVersion~Our Daily Bread

Friday, August 22, 2014

Change your world

I have always been the type of person that is a "go getter". If you don't like the way something is, you fix it. If you don't like your job, a friend, a significant other, you go out and find one you do like. Relying on others to make you happy is not realistic. You will never be happy . You will always have something to complain about. Outside elements aside, you chose how you react to everything. You can either be positive or negative. So why am I writing this here and what does it have to do with RA? Well I'll tell ya!

When I was first diagnosed with RA I went looking for a support group. I contacted the Athritis Foundation. They said I could make my own support group or I could volunteer with them and meet some people that way. I ended up doing both and learning a valuable lesson in the process.

The support group Squeaky Joints was started almost 3 years ago. It was first just for those diagnosed and has since branched out to being support for family members, not yet diagnosed, and those with other autoimmune diseases. With the change in the type of members we were attracting Peggy and I added our slogan: Raising awareness about Rheumatoid Arthritis one Squeaker at a time. (The group members call themselves Squeakers)

Our new mission was to be heard. To educate the world on this misunderstood invisible disease. With articles being published about us, several speaking engagements, and winning various awards I would say we are slowly changing minds. My thinking has always been that we would do for RA what advocates did for HIV in the 80s. That 10 years from now everyone will know what RA is. 

One of the things that used to upset me were those darn commercials about RA medications. Take this medication and you can build a playground, run on the beach, ride a bike, or play 18 holes of golf. I get they are marketing a product. They just have no idea that most of us were on those medications and we couldn't get out of bed from the pain. Others are frustrated too. I hear it everyday in Squeaky Joints. 

Honestly I don't get upset anymore when I see those commercials or when someone says I don't look sick. Why, you ask? Well I made the decision to be postitve about my RA. When others don't understand I don't get frustrated with them. If they make some ignorant remark like "you're to young" or "my grandmother has arthritis" I educate them. These commercials. They are a stepping stone for us. They are a chance for us to educate. RA is already being put out there in the universe. Who cares how! It's there and it's being talked about. 

I have been struggling with a way to say this without offending anyone. My challenge to you is to stop complaining and do something. You don't like how RA is perceived? Well get off your butt and do something about it. Don't just sit there and criticize. Make your own commercials. We all have smartphones with video recording capabilities. Start a blog. Write about your struggles. Host a fundraiser where the proceeds go to research. The possibilities are endless. 

I look forward to seeing your ideas come to life!

Thursday, June 26, 2014

Stem Cell Therapy

A member of the Squeaky Joints Support Group was kind enough to document his journey on stem cell therapy for his Rheumatoid Arthritis. He is a 49 year old male classified as having severe RA. Here is his story:

"In July 2012 I went for Adipose Adult stem cell therapy. it took about 2 months until I felt something and soon to follow it healed me to about 80% and lasted till about Aug 2013 till the curve started. Now I was on Remicade with prednisone(20 mg per) and many pain killers (30 mg morphine 2x per and perc 10 4x per) around Feb 2013 i stopped all pills. A few flares had popped up in the following months but were far from what i was. (bad flare every few days) both knees are in need of surgery as well as hand/wrist but during that span it wasn't an issue. 

so... in Dec 2013 I went again and am not feeling much on the recovery. I noticed muscle mass, and had slowed the flare process but had not reversed like last time.(unsure if reason is no biologics) so now am back with Rheumy and did tests. Round two took a while to take hold but it has indeed set in fairly well. Not as well as the last time back in 2012 but has helped with flares and relieved the pain levels tremendously. Being i'm in need of surgery asap i'm thankful for the added length of time. I had a fallout with my last rheumy so i never did get on the biologics, but my primary wants to start me up on Enbril or Humera. 

So after the rheumy I had started MTX with prednisone, and am taking 5Mg of vico's 2x daily. after a debate with him about the stemcell, he tried to make me go on Simponi, but found out my copay was 500.00$ I freaked! after 3 days of phone calls and a ton of stress I got it down to 95$ per month (still out of my range) so I had asked for another bio and after that discussion I noted he is hell bent on Simponi (after saying Actemra first, which I can afford) i decided to leave that rheumy. now my primary is talking about enbrel or humera. my goal here is to gain the upper hand on this RA while my body is at its healthiest. But finally have a Dr who is in agreement with my viewpoint, and I just saw him today. My TNF is good, lowered from last check. no need for any biologics he says, and agrees the stem cell has helped (unlike my rheumy) doing a check on the liver via ultra sound. all in all things are looking much better. so to celebrate i'm going to work on a deck repair job.... yay lol"