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"

Wednesday, June 11, 2014

Sitting on the other side

Today I made a simple phone call that ended up being pretty hard. 19 years ago one of my best friends and I drove a half hour down to West Haven, CT. We drove to a bone marrow drive that was free to get tested and get put on the National Registry. Since then I prided myself that I was going to save someone someday and make a difference. At the time I did not weigh enough to give blood. Damn I miss those skinny minnie days! 

Today I was watching MTVs True Life and there was a man on there that needed a bone marrow transplant. I thought "hmmm can I still donate with my RA?". I looked up the medical guidelines and guess what? I can't. 

So I pick up the phone and I get Matt. I tell him I need to be removed from the list and why. He said we don't actually remove you. We just change the status of your profile in the off chance you will need us as a patient. 

Need them as a patient?  Whoa!  I don't like being on this side of things. Well then again who does? Standard procedure for Matt. For me this is MY life. Rant over.

Tuesday, June 3, 2014

Methotrexate: what you don't know can kill you

For many, injectable methotrexate or MTX has been a God send. With fewer side effects than the tablets it seems to be the favorable choice for patients with RA. There is however a common misconception that could kill. 

Injectable MTX comes in 2 forms, with preservatives or preservative free. No matter if you have a 10ml vial or a 2ml vial you can't go by quantity for how long this medication will last. 

MTX preservative free is one time use. Without the preservatives, once you puncture the rubber, the medication is compromised. It starts to grow bacteria. 

MTX with preservatives is good for 28 days after puncturing the rubber. After 28 days bacteria starts to grow also. 

So let's say you inject 1ml a week. You have a 10ml vial with preservatives. Doing the math quick you would think you have a 10 week supply. That is incorrect. You have a 4 week supply and you must discard 6ml. If you keep using it then on weeks 5-10 you are injecting a medication with bacteria that won't work as well. 

Having a compromised immune system plus injecting bacteria could have very serious consequences. Please pay attention to your vials and this detail. Below are the different forms MTX can come. You will see under the pictures it will tell you if it's preservative free or not. 

Knowledge is power. I'm not doing this post to knock MTX because for me, this medication has changed my RA for the good. I'm just spreading awareness.


*MTX picture courtesy of epocrates apple app

Thursday, May 29, 2014

The Hatchet Job

Today marks 3 weeks post op. From my point of view the surgery went well. I stayed over night in the hospital. My parents brought Julia to see me. I was starving because I was on a liquid diet. The pain wasn't as bad as I expected. Honestly it was the same as when I had the cysts so I was a little used to it. Then again I religiously took my pain meds. My Dr. manged my pain beautifully in the weeks following. Making sure I felt nothing so my body wouldn't stress and send me into a flare. 

Last Friday I had my 2 week post op. The surgeon in Oct f***** me up. It took her an hour to cut through all the adhesions I have and get the robotics in place. (Only plus she had to cut some fat out) I have adhesions connecting my large intestines to my abdominal wall. They can never be removed to risky. Endometriosis was starting probably from the surgery also. Polycystic ovaries. (thought I just had 3) and some tumors inside the uterus. Pathology on everything was fine.

Seriously I was blown away. I've calmed down. I'm not as mad as I was last week.  She doesn't know how I'm still up and about with what happened and the pain. I'm still on pain management but on an as needed basis. I've been getting sharp pains that last about a minute a few times a day. 

The adhesions will be there for the rest of my life. My intestines are stuck to my abdominal wall. STUCK TO MY ABDOMINAL WALL! WHAT?! Every time I bend over it hurts. I know what the pulling sensation is. I feel it more prominently now that I know. 

So as I recover I am left here with my thoughts. How could he do this to me? He took an oath to do no harm. I took that same one for both medical careers I had to leave for RA. I feel numb honestly. It's so hard to wrap my head around the fact that he did this. 

On another note...the knee saga continues!!

So back in Dec I went for a follow up on my knee. My surgeon said I could get the hardware in my knee out after a year. My year anniversary for the knee surgery was back on Feb 22. First he said I had to deal with all my abdominal issues before he would touch me. 

Last night as I was going to bed I noticed my knee looked a little funny. I felt it and looked closer and realized the screw had popped out of the bone! Of course just the thought of that isn't enough to get my point across so I included a picture for your viewing pleasure. 

Oh!  I almost forgot to tell you! Squeaky Joints reached 6,000 people this week! Unbelievable. Super excited. That's a lot of people with RA.

Tuesday, May 6, 2014

Looking through the rearview mirror

So from my previous post you know I am due for my surgery on Thursday. A total hysterectomy. I wanted to do this blog entry before then while my emotions are still raw.

One thing I did not anticipate was the unsolicited advice I would receive. I know intentions were out of love and the need to comfort me. Coming from the community of people it did I was surprised. 

As a person with Rheumatoid Arthritis when my body is screaming in pain on the inside I may look my prettiest on the outside. A common comment from a stranger is "you don't look sick". People not understanding is a constant compalint from almost everyone with an invisible illness. 

I have always been an open book with my illness, treatments, and struggles. I do have a blog right? This is the first time I have not felt supported by the masses. Don't get me wrong my friends and family have been amazing. Let me explain myself a bit more. 

My uterus is the only part of my body RA has not sunk it's teeth into. My lady parts are healthy. I have never had pain or cramps. My cyle was always on time and never beyond a few days. I am one of the lucky ones. Everything there is perfect. 

These last few months I've had a 4.8 cm cyst in my right fallopian tube. Your fallopian tube measures .06 to 1.2 cm so you can imagine the pain I am in. This being the first problem I've had it was a shoker that I am going to lose everything. It's a decision that was not made lightly, trust me. What it comes down to is me having a 85-100% of getting uteran, ovarian, or cervical cancer. Since the doctor has to go in there anyway we are going forward with the procedure. We took into consideration my age, my disease, my risk of surgery being high, having more kids, etc. With that said I still feel like my body made the decision for me and I am still accepting that.

Usually I can let comments just roll of my back. Not this time. I am writing to change your perspective. 

Here I am with my healthy lady parts and all everyone is saying is "its the best decision I ever made". Um HELLO. I am healthy. I told you that. Are you not listening? Stop saying that! 

These people that are assuming that I will think this is the best decision ever are the SAME people that complain about so called ignorant comments made about their RA. The SAME people. You would think if anyone they would get it. Nope.

So I guess the point I want to get across is the next time someone says something that you take as not understanding your RA remember this blog post. Know they they are just trying to comfort you like you were to me. 

Tuesday, March 11, 2014

I can't make this crap up I swear!

I apologize for the length of time in between posts but when I fill you in, you will understand. Last we left off I was getting a second opinion in Boston for Diesel. (Click here for the first part of the story) My Rheumatologist had a doctor she recommended. We did the 2 hour drive on a Monday morning anxious for what he would tell us.

Let me back up a bit. Sunday night I was looking over all my medical records. What I found was disturbing. For months I had been complaining to the surgeon about lower right quadrant pain. That's actually what sent me to the hospital. I thought it was my appendix. Well after my surgery and the weeks following my doctor wasn't giving me solutions. He just threw dilaudid at me. It turns out Diesel was actually located under my breast bone. I had never felt pain there. This pain I was having was from 2 cysts on my right ovary. One was 4.8cm and the other was 1.8cm. It also turns out I had cysts in my kidney too. I was livid. I was so mad I could cry. Why would he not tell me these things? After I vent to my husband I'm ok. Tomorrow I will be getting the best care up in Boston so he can go screw himself right?

We go to Boston. We met the new doctor and he spent an hour with us. He listened to everything. The story, our concerns, our plan. He was awesome. He said "We'll figure this out." I go back to Boston that following Friday and do a bunch of tests he had ordered. Including an ovarian ultrasound for my lady parts doctor, which he encouraged me to go see ASAP.

A few weeks go by and the new doctor has had a chance to look over my old scans, bloodwork, and pathology. He compares them to the new scans, bloodwork, and pathology. He calls us with his findings. He speaks to Joe. (I was getting some beauty rest). 

Ok here we go...deep breath...There was no mass, tumor, or Diesel. He's about 95% sure. He's also positive that I had pancreatitis and it went away. That and the ovaries were causing the pain. He also said the pathology from the biopsy was just fatty tissue which everyone has. You can just imagine my heart and mind are racing. I'm floored. I'm beyond mad. You know the mad you get and you just have to laugh because if you act on your true feelings you would end up in jail? Yeah that mad. 

It took me a good week to process this information. All this time not on my RA meds and I was close to flaring and staying that way. A high risk major surgery was done that I didn't need. Every time I looked at the huge ugly scar running down my belly I wanted to cry. My sister has always told me I should be proud of my scars. I'm still finding the strength to do so. I know I will at some point. 

My next step was to get the other medical issues taken care of. I went to my nephrologist down at Yale and he assured me my kidneys were great and he'd keep an eye on them. Phew {wipes brow}...NEXT!

On to my lady parts doctor. Actually this was a new doctor to me and someone my sister recommended. So last Tues I go to my appointment. We talk in her office, she looks at my ultrasounds they did in Boston. She asks me for family history of cancer and I tell her to look at my sisters chart because I have no idea as far as the women are concerned. She then tells me I'm high risk for surgery because of my RA, narrow airways, and sleep apnea, so she probably wouldn't do it. She would just drain they cyst and it would probably come back. I was pretty disappointed because it was causing a lot of pain. I mean wake you out of a dead sleep some nights pain. 

Next we go into the ultrasound room and she does an ultrasound of my ovaries. She says "ok left one looks clear and healthy. So does the right one. Ohhhh how does April sound for your surgery?" Yeah let me translate. I do have a 4.8cm cyst...IN MY FALLOPIAN TUBE!!! And next to it is not a cyst but backed up fluid taking up the space of 1.8cm. Holy crap!! Considering the fallopian measures in circumferance .06cm-1.2cm. Yup. You read that right. So now I am in danger of the tube bursting. Luckily we have some time (just weeks) because cysts grow slower than an ectopic pregnancy. And why does the cyst hurt worse now that I've been validated?

Fast forward to last Friday. I'm down in Jersey and call to schedule my surgery. The doctor calls me back. I have found out that ovarian, uterine, and cervical cancer run in my family. I also am a carrier for the HPV virus. So more than likely she said I will get cancer. Because she is going in there anyway to take of the cysts she decided a full hysterectomy is needed. Wow. My uterus is pretty much the only body part that has cooperated all my life. I've been told I have a perfect uterus. No abnormal pap smears, no endometriosis, no cramping during periods, very short and on time cycle too. I hang up the phone and I just sit there.

I'm in my thirties. Granted, my high thirties but still. I'm in shock. It takes me a while to react. Then I cry. "I'm not done", I say. "I'm not done". I had held on to a small hope that oops I'll get pregnant again. Julia was an oops. I desperately all these years I wanted another oops. 

I have struggled the last few years with the decision to not have more kids. I have watched so many with diseases just keep having kids and they are spread thin. Barely making it through the day. I chose to be a quality mother and give all my energy to one child because at times I know I will only have 40%.  I'm not judging those that do. I'm just saying it's not a fit for my family. 

A hysterectomy is so final. You can reverse a vasectomy. You can harvest eggs once your tubes are tied. It's been a week,and I can't wrap my head around it. I've been in a daze just going through the motions. Everyone keeps telling me "oh it's the best thing I ever did!". But this is ME. My head agrees this is the best option rather than risking cancer and them having to go back in. My heart is what's broken. I feel like I'm mourning a child that isn't mine, that I was never going to have. Is that normal? 

May 8. That's when it's going to happen. I just wanna fast forward to when I will be ok with all of this. 

Well I think I've written enough for now. I'll be back sooner than later. Muah.