How I beat depression

Only a few know this story. I have kept it private for years. Now I am ready to share my experience  I have changed the names as to give the family some privacy.

I met Mia in 7th grade. We didn't get along at first though we did have mutual friends. Eventually we grew on each other and soon we were dancing together to the New Kids on the Block at slumber parties until 3 in the morning at our friend Kayla's house. High school came and we would say hi as we passed in the hall and converse at the same social functions but that was the extent of our relationship. College came and I never spoke to or saw her.

In 2009 we reconnected on Facebook. Went through what we were both up to and how we were doing. I was upset to find out she had cancer and would check in periodically to see how she was doing. At that time I was new to Rheumatoid Arthritis and scared. They had just started me on a chemo med. No way as near the dose for a Cancer patient but scary just the same.

Back in April 2010 I was upset and at a real low point. I was so depressed and I felt so alone. I didn't have a support group, there weren't any in my area at the time. I spent days in bed crying and feeling sorry for myself. I was just told if I didn't get better they would amp up the treatment and I would have to get a port put in my chest. I turned to Mia. She too had a port. She understood what it was like to be in a body that didn't do what it was supposed to. She understood what it was like to spend days in bed and watch the world go by. She understood my fear of the port. She understood how it felt to plan your life and have it all taken away. She was my only friend that had, been there, done that. It was encouraging that she was so at peace with the huge changes in her life.

She was dying of cancer and yet she comforted me and validated all I was feeling. I remember telling her she got the bum deal out of the 2 of us and I should be comforting her. She told me that I got the bum deal. What?!?! Was she crazy? She said I have different struggles because everyone knows what cancer is when she says it but no one knows what RA is so I always have to prove I'm sick. She told me she liked to help because it got her mind off of her own problems. Those words validated so much for me. I knew as long as I had Mia, and saw her strength I could get through anything. She was my rock, though just through Facebook, and she gave me hope. I was starting to turn a corner.

In August of 2010 Mia passed away. I was lost. I had no one. I couldn't even drive to the service to pay my respects and say good bye because I was stuck at the hospital that day.

I wasn't ready to be strong. I wasn't ready to face my illness without Mia's words of encouragement. The fear and darkness came back as I mourned for my friend. My depression returned and it was even worse than ever.

One night I was listening to the radio and this song came on. It's called Held by Natalie Grant. Before you hear the rest of my story you need to read the words to the song. Here you go:

Two months is too little

They let him go

They had no sudden healing

To think that providence

Would take a child from his mother

While she prays, is appalling

Who told us we'd be rescued

What has changed and

Why should we be saved from nightmares

Were asking why this happens to us

Who have died to live, it's unfair

This is what it means to be held

How it feels, when the sacred is torn from your life

And you survive

This is what it is to be loved and to know

That the promise was that when everything fell

We'd be held

This hand is bitterness

We want to taste it and

Let the hatred numb our sorrows

The wise hand opens slowly

To lilies of the valley and tomorrow

This is what it means to be held

How it feels, when the sacred is torn from your life

And you survive

This is what it is to be loved and to know

That the promise was that when everything fell

We'd be held

If hope if born of suffering

If this is only the beginning

Can we not wait, for one hour

Watching for our savior

This is what it means to be held

How it feels, when the sacred is torn from your life

And you survive

This is what it is to be loved and to know

That the promise was that when everything fell

We'd be held

I started crying because the words moved me and I had the strangest feeling that I was being held. I was laying in bed in the dark. I had this vision that I was in the fetal position and I was resting inside someones hands that were faced up at the sky. I cried hard, the hardest in my life. When the song was done I felt at peace. There was a huge weight lifted off of me. I was no longer scared. I was no longer lonely. I was ready to face this head on. I told a few people. Just a few for fear people would think I was crazy and criticize. I knew that God was who was holding me in his hands. I knew that God was going to be my side until eternity and I was going to be ok. Then one day my sister said "It wasn't God, it was Mia, she's your angel". I said "huh, maybe you're right".

In October 2010 I had surgery to get my port in. Something Mia had talked at length about. A hurdle I was dreading since April. I must have read the email Mia sent me about it back in the spring 20x the night before. I had her picture with me at the hospital although I know that she was there anyway. A few weeks later I marched right into the cancer center and used the port. Mia was right. Piece of cake.

Weeks later I emailed Mia's boyfriend. Being that he and Mia lived 2 hours away I had never met him. I'm not even sure he even heard of me. I wanted to tell him the story that I just told you and offer my condolences. What he told me made the above experience even more of a blessing.

He told me he had an experience where he was feeling down so he put his favorite picture of her smiling on his phone. That day whenever he looked at his phone he thought of her. That day he was at the grocery store he pulled out his phone and kissed the picture of her. Instantly their song came over the loud speakers. He immediately thought "she did that" but then thought "nah stuff like that doesn't happen".

He then told me that about a week later he went to a psychic. The psychic said there was someone there that had died. (yeah good guess right LOL). What she said next though... She said that Mia wanted to contact him but she didn't want to scare him. So instead she came to him in his dreams and she plays special songs for him on the radio.

When he told me this I was in awe. He said he thought the person holding me was her and I so agree. It was her! She is my angel. She was holding me in her hands. I think I cried for about an hour then. A good cry. A refreshing cry letting all my sadness go and letting in all of her love.

I feel it an honor to have known her. She changed me, my outlook, and my way of dealing with being sick. I am better having known her. I will never forget the bond we shared though brief. I truly believe she is one of my angels.

Months later I went on to start this blog to encourage people in my situation. To educate those just diagnosed and family members that were in the dark and just thought RA was just arthritis. Months later I started a support group. I was happy. I am still happy.

Welcome to my world

I wake in the morning and lay in bed to wait for my joints to loosen.
I have Rheumatoid Arthritis

I sit up and I grab the pencil on the nightstand (because my hands are achy and stiff) and use the eraser to press the button for the alarm.
I have Rheumatoid Arthritis

I limp to my closet, because my knees are rubbing bone on bone, and get my clothes for the day and a towel for the shower.
I have Rheumatoid Arthritis

I jump in the shower and try to ignore the shoulder pain while I lift my arms to wash my hair.
I have Rheumatoid Arthritis

I get out of the shower and dry off without falling.
I have Rheumatoid Arthritis

Exhaustion already. I lay back down in bed to rest for five minutes.
I have Rheumatoid Arthritis

I get back up and use the hairdryer to dry my hair. My wrists are weak so whatever dries in the two minutes I can hold up the dryer is all I got.
I have Rheumatoid Arthritis

I brush my teeth with a special thick handled toothbrush so my fingers won't cramp.
I have Rheumatoid Arthritis

I brush my hair and let it air dry. Hairdryers are very heavy.
I have Rheumatoid Arthritis

I apply some make up so I can cover up the rashes I sometimes get.
I have Rheumatoid Arthritis

I lay on the bed to rest because I am exhausted already.
I have Rheumatoid Arthritis

I sit up and put my jeans on. I can't stand and do it because of the knee weakness and pain.
I have Rheumatoid Arthritis

It's a struggle to put my bra on because I have to put in on backwards so I can work the clasp then turn the whole thing aroung.
I have Rheumatoid Arthritis

I slip on my shoes and it takes me about 3 tries per shoe to get them tied.
I have Rheumatoid Arthritis

I think you get the idea how many times I am reminded each day that there is no escape from this disease. Not that I want to always be thinking about RA. It's hard to get it completely out of my head. Every thing I do takes an extra few minutes. Those minutes add up to energy used. Rationing my energy is an everyday struggle that I just recently have gotten a handle on. If I go out to physical therapy and to lunch one day then I have to go home and rest so I can be alert enough to spend time with Joe and Julia that night. Knowing your body and your limits is key. Knowing what you can handle and not overbooking yourself is important so you can be the wife/husband or the mom/dad you need to be. I am fortunate that I don't work anymore and my husband supports the household. I can spend the day doing what I need to do to get my energy up so when they come home from school and work I am present in the moments.

It's a constant struggle for people with RA to get their loved ones to understand what they are going through. Why they are so exhausted. Some we can't fault. I mean look at how many times we think about our situation every day. I guarantee our loved ones don't think about it that much. Why would they? Their daily tasks are simple. That is why we need to educate. Make them watch our routines and our struggles. Explain the war going on in your body, in your joints. Tell them what they can do to help. Remember the way you initially start the conversation will set the tone on if your loved one will be receptive. Try not to accuse and say things like "you don't understand". They will just put their defenses up. Say something like "you know, I had no idea what RA was until I did some research. Did you know...(fill in blank)...and that's why I get tired." Make a family plan. Say "if you can let me rest for this amount of time each day then I can help you with things later."

I know this won't work for everyone. I just wanted to share because it worked for me.

My life. Changed forever.

It's no secret that RA causes extreme exhaustion and energy is limited. Taking naps during the day has become the norm for so many of us. Not sleeping at night and not waking up refreshed is a daily struggle for most. A combination of RA and the medications we take to stop the joint damage contributes to much of that. My exhaustion was so bad I could only drive around town. No long trips, I would fall asleep at the wheel. Or so I thought until recently.

Back in August I took a trip across the country and went to CA to see my Squeaky Joints partner in crime Peggy Piscopo. Her family was gracious enough to rearrange themselves and give me my own room. I'm sure that had something to do with the fact that I snore, LOUD. I thought it was due to some weight gain over the past year. Lose some weight and I'd sleep better. So not the case.

Peggy called me when I got back home and gave me some interesting information. She asked if I knew that I gasp for air in my sleep. Apparently I make a choking sound too. She could hear this from her bedroom and actually had come to my room to check on me several times. News to me! Joe never mentioned that he heard anything like that.

I immediately made an appointment with my general doctor and luckily got in the next day. She was concerned and gave me the name of a sleep doctor. A few days later I was sitting in the sleep doctors office going over my health story once again.

It was a real eye opener. She kept asking me questions and my answer was always "well yeah, I have RA". Do I hurt when I wake up, do I feel like I'm not rested, are you in pain? Suddenly, like a light bulb turning on, I realize my RA is not what is making me so miserable. It could be the way I sleep! I'll never forget the hope I felt in that moment!

Dr. H was concerned that I was having surgery in 2 weeks and having undiagnosed sleep apnea and general anesthesia is a dangerous combo. Another thing clicked! I had kidney surgery back in April. A 1/2 hour surgery took 4 hours because I crashed. My BP dropped so low, they had to put a breathing tube in, several complications. I am very lucky. Very very lucky.

Dr. H was convinced based on my symptoms that I had sleep apnea. My airway is as small as a child's. She was ready to write me an RX for a CPAP machine on the spot. For those of you that don't know a CPAP machine forces air into your lungs via a face mask. She ordered an immediate sleep study. She actually wanted me to go right in that night. So off I went to the hospital. It actually was really nice. They have the rooms set up like hotel rooms. Big bed. Big TV. For those of you that have never done a sleep study it's really not that bad. You go to the hospital at your normal bedtime, they put some electrodes on you and monitor you while you sleep.

2 days later I was back in Dr. H's office for the results. Usually they take 2 weeks but she had them expedited because of the upcoming surgery and my symptoms. I was diagnosed with severe sleep apnea. I stopped breathing 40 times an hour, a minute each time. That's 40 minutes of every hour I slept that I was not breathing. How scary is that? She sends me immediately to get a CPAP machine.

I start using the machine that night. I wake up the next morning. I feel pretty good. I use the machine a few more days and I start feeling a bit more rested. I have my surgery and it goes smooth. 2 weeks later I go in for another sleep study this time with my machine. They wanted to monitor me and make some adjustments to the machine settings to make sure I was getting the correct amount of air. I go back to Dr. H for my results and she fixed the settings.

That night I slept like a baby. I woke up refreshed. I woke up and I wasn't stiff. I didn't even hit the snooze button! As I started using the CPAP every night I was feeling so much better during the day. I no longer needed a nap.
Months later I am a new person! I have energy. My RA is under control. The medications I am on are working. They have been working all along. My Rheumatologist had said at my last visit that she was confused at my exhaustion when I didn't have any swelling and my blood work came back that the RA was under control. It was the sleep apnea!

My life has changed forever! I have my life back. I have time back. Exhaustion has taken me away from my family, friends, and all the things I love. I am still limited on what I can physically do because of severe joint damage but I can reconnect with all those I have drifted from. Little things I can do now like help Joe keep the house clean, hang out with Julia, see more of my friends and relatives. Blog more!

Peggy has given my so many gifts. She is my RA soulmate. This gift I will never forget. She gave me my life back and that is priceless. She gave Joe his wife back. She gave Julia her mom back. Thank you Peggy. I dedicate this post to you. I love you.

Blood Work Broken Down

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I don't know about you but all the tests the doctors do sometimes they make my head spin. I never kept track of my blood work and how the results fluctuated month to month. I figured "why bother, the doctor will just tell me when some thing is off". I have an amazing team of doctors so this is still pretty much my attitude.

I have made a promise to all in my online support group to educate a spread awareness regarding this disease. I know many are confused with all the monthly blood work, what the results mean, and if they are really necessary. Below I have broken down the tests as best as I can.

CBC

Complete Blood Count

why it's done
measures the number of red blood cells (RBC)

measures the number of white blood cells (WBC)

measures the total hemoglobin (carries oxygen in the blood) in blood and each red blood cell

the fraction of blood that contains red blood cells

the size if your red blood cells

measures your platelet (circulate the blood and aids in clotting) count

what results mean
high RBC- dehydration, pulmonary problems, heart problems

low RBC- anemia, autoimmune diseases

high WBC- infection, inflammatory disease, severe emotional stress or physical trauma

low WBC- bone marrow failure, liver, spleen, autoimmune vascular disease

high platelets- blood clots can form

low platelets- excessive bleeding

ANA

Antinuclear Antibodies

why it's done
measures the number of antibodies in your blood

what the results mean
ANA appears in those patients with systemic autoimmune diseases

RF

Rheumatoid Factor

why it's done
measures the the IgG (cells that help the immune system fight) and if antibodies have formed

what the results mean
positive results suggest Rheumatoid Arthritis

CRP

C-reactive protein

why it's done
detects the systemic inflammatory process, infection, and if you are responding to antibiotic treatment

what the results mean
elevated levels are consistent with an acute inflammatory process

LFT

Liver Function Test

why it's done
certain medications used to treat autoimmune diseases metabolize in the liver

what the results mean
elevated levels indicate a backup of medication in the liver

ESR, SR

Erythrocyte sedimentation

why it's done
measures inflammation in body

what the results mean
high ESR- anemia, kidney disease, pregnancy, systemic rheumatic conditions

very high ESR- multiple myeloma, vasculitits

lower ESR- congestive heart failure, low plasma protien as in certain liver and kidney diseases

M Component, Paraprotein, Bence Jones Protein

Monoclonal Protein

why it's done
detects the presence of immunoglobulins (antibodies) in B cells which can be associated with inflammation

what the results mean
high levels can indicate an autoimmune deficiency

IgG, IgA, IgM

Globulins

why it's done
monitors immune deficiencies

what the results mean
decreased levels indicate immune deficiencies

Well there you go! I hope this post was informative and has helped you understand a little more about what your body is telling your doctors each time you get a needle prick in the arm.

* photo provided by http://www.managemypractice.com

Rheumatoid Arthritis and Hip Issues by Guest Blogger Elizabeth Carrollton

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Rheumatoid arthritis, one of the most common forms of arthritis, is an autoimmune disease in which the body's immune system attacks the joints. It can affect any joint in the body, but is particularly troublesome in weight-bearing joints like the hips. Left untreated, rheumatoid arthritis can cause gradual hip injury, the inflammation it produces slowly degrading the joint to cause loss of function and disability. Often, with effective treatment, progressive joint damage can be slowed or the disease forced into remission.

Causes

Rheumatoid arthritis is a particularly aggressive joint disorder that is caused by an immune system that has gone wrong. The immune system is meant to protect the body against disease-causing agents, but when autoimmune disorders like rheumatoid arthritis happen, the immune system turns against the body, attacking healthy cells. In the case of rheumatoid arthritis, the immune system primarily attacks the thin membrane that lines the joints, called the synovium. This leads to inflammation and thickening in that membrane, which causes its cells to release enzymes that break down bone tissue and cartilage. The exact cause of the disease is not known, but heredity, environmental factors and hormones may play a role in its development.

Symptoms

Hip rheumatoid arthritis causes symptoms that include severe pain, swelling and stiffness, and the hip may feel warm to the touch. Rheumatoid arthritis pain originating in the hip joint may cause stiffness and discomfort in the groin, lower back and thigh. Other symptoms of hip rheumatoid arthritis may include fatigue, fever, appetite loss, and pain or stiffness in other joints. Symptoms can appear gradually or suddenly.

Treatment

Disease-modifying anti-rheumatic drugs, or DMARDs, are the primary form of treatment for the control of rheumatoid arthritis symptoms. They are often used in conjunction with non-steroidal anti-inflammatory drugs, or NSAIDs, like aspirin, ibuprofen or naproxen, or low-dose corticosteroids. Regular exercise or physical therapy is often part of the treatment plan, keeping hip muscles strong and flexible for good joint support.

In cases where hip injury and deterioration has progressed to the point that severe pain and disability are present, hip replacement surgery is often recommended. This is an option that is quite successful in about 80 percent of hip rheumatoid arthritis patients.

However, it is important for patients to review all implant options with their surgeons to reduce risk of complications. Faulty hip replacement systems have caused serious problems in patients over the last few years, with several products recalled after high rates of failure and complications.

Most of these issues involved metal-on-metal implant systems, which have metal surfaces on both the ball portion of the joint and the socket. Friction between these components caused the implants to shed particles of metal debris into the soft tissues surrounding the hip. In some patients, this caused metallosis, a serious and painful inflammatory condition that can lead to tissue death, bone loss and implant loosening or failure. Many options are available besides metal-on-metal implants.

Elizabeth Carrollton writes about defective medical devices and dangerous drugs for Drugwatch.com.

* picture provided by Columbus Spine

How far we've come

Today marks the first birthday of my support group Squeaky Joints. When the group was started, Peggy (my co-founder) and I never dreamed what would come of this group. Our vision was to have a place where the few friends we had made on Facebook, with RA, could get to know each other more. I remember when we got to 50 members, some being loved ones that wanted to understand more, we were excited. I remember being proud that we had support for ourselves and the friends we had made. I had no idea what was in store for us.

As we watched in amazement the group grew. Members added each week. A few months in we had 200 members! Quickly people started calling themselves Squeakers. They referred to the group as Squeakerville. In the group there was talk of getting shirts and awareness bracelets. Peggy and I soon sprang into action. We consulted with a local artist and created a logo and filed for a trademark. It reflected our personalities perfectly. We designed awareness bracelets of purple (autoimmune) and blue (arthritis). We weren't in it to make a profit. We just wanted people to have something to wear while they weren't on Facebook that reminded them that they had support. That they were loved.

Jan 1, 2012 we launched our website http://squeakyj.com/. By now we had 300 members! The Arthritis Foundation was starting to take notice. I was invited to be on the committee for the 2012 Greater Hartford Walk. I shared my story and soon was asked to be an Ambassador.

By now I was in awe of the group dynamic. There were so many people just like me! Some ahead of me on their journey, some just getting diagnosed. All needing validation that this disease sucked. We shared our pain, our heartaches, loss, and fears. There was something else though. There was laughter, excitement, love, and support. We shared our triumphs and dreams. We shared what inspired us, what got us out of bed in the morning. We all had become one big family. We just happened to have RA.

In May we had our first Squeaker event. The Arthritis Walk. Peggy flew out from CA with her son Max, other Squeakers came from NH and MA. 9 people total from this support group were in attendance! It was a perfect day. To actually hug these souls that we had poured our hearts out to for the last 8 months. It's a memory I will cherish forever.




As I reflect on the past 365 days I am proud. We are over 500 strong and growing. We may be large in numbers but you wouldn't know if you stopped in for a visit. Everyone is welcome and Peggy and I work to make Squeaky Joints your "safe place". You can stop in, vent about your pain, share a laugh, and not worry about what people think. It's a closed group and we have a zero tolerance policy for judgement and bullying. Squeaky Joints is your haven.

Now for a mental note "I must start to dream bigger!" I can't wait to see where this next year takes us!

HAPPY BIRTHDAY SQUEAKY JOINTS!!

Crossroads

We all have them at some point in our lives. When we are forced to choose the best option, the lesser of two evils. A moment when we wish we could fast forward into the future to help us make our decision. I have found myself lost without a map. Unsure of my path and what's to come.

On Thursday I made the trip up to my Rheumatologist in Boston. The visit didn't quite go as I expected. I was confident that we were gonna forge ahead with my treatment and take this RA head on with the strongest of meds. I was way wrong.

The only backup I have to my diagnosis of RA is an ANA tilter of 1:160 and joint inflammation with pain. Based on that I have been treated for 4 years for RA. Four years of toxic medications like chemo (MTX) and biologics (Humira, Enbrel, Orencia).

My Rheumatologist throws me a curveball. I may not have RA. I haven't been responding to any treatments. Even a little bit. She has never seen my inflammation in person other than a picture I showed her. My case stumps her. She has never seen anything like this. I can't go to the next step in treatment, which is Rituxin, because without her confidence in my diagnosis, she can't expose me to that drug.

I'm sitting in her office and I can feel the blood rushing to my face. I'm trying my best not to burst into tears. I remember this feeling. It's the feeling I had at all the doctors visits before I starting going to Harvard Med. I'm suddenly lost again. My head is spinning.

What does this mean? I have RA! I have to! I am the Arthritis Foundations Walk Ambassador. I've been running an RA support group on Facebook for almost a year. I speak at functions for the Arthritis Foundation. Countless hours to spread awareness and what was it for? I have all the symptoms! I don't understand.

What do I do? Do I go off all my meds and hope that they are working and I suddenly flare from not taking them? This is the 4th Rheumatologist I've seen. Do I go get a fifth, sixth, seventh opinion?

RA has not defined me. I just have a real problem with what I've been through these past years. All the surgeries, some because of the RA meds. I processed the disease mentally. I grieved my old life and I rebuilt a new one.

I'm at a crossroads and I hope I make the correct choice.