End of Month

When I first started taking Enbrel about 7 years ago, I took it every week for a month or two, then I tapered off until I felt pain again.  My doctor said to take it as needed, but to make sure to take it when I felt the pain.   He said there is a lot of damage that happens in my connective tissue when I am in pain and it is fighting each other.  

Now knowing this I do a shot when I first feel the pain coming on, which right now is only about 29 or 30 days apart.  When I first stopped taking it, I went a whole year before I needed another shot.

I feel like I eat healthy, and I strive to live a healthy life.  When I was doing Cross-fit 6 days a week for over a year, I did not find the times between shots get farther away from each other.  I ate a Paleo diet for most of that year about 80% which is pretty good.  

My friend told me about Miracle II Neutralizer that took her pain away and she no longer suffers from pain.  I tried it for a month and it does work!  The only problem was I was not consistent enough.  You have to drink about 4 cap fulls a day in water or whatever, it doesn't taste.  Sometimes I would feel a little pain, and then would drink more and it would help.  The bottles cost about $7 for about 20 oz of this stuff.  I used it for a month and decided I was spending more on this Miracle II stuff than I now was for the medicine.  I went back to the shot monthly.  If I did not have the Enbrel Support where I pay $10 a month, then I would do this other as a good alternative.

EFT

Since the beginning of my pain, 11 or so years ago, I have been trying to listen to my body more.  I feel that everything that happens is because of what I eat, think, or feel.  It seems like I have a lot of emotions that cause me pain.  It's like I wear my emotions as pain in my body.  For some reason I must have chosen this to be one of my challenges in life.  It's not that I meditate daily to see why something is happening, but after ignoring some pain for so long, it starts to scream at me.

My mom had a book when I was younger, Feeling Buried Alive Never Die, where I could look up the pain I was feeling, and it would tell me the negative thoughts that caused it.  These negative thoughts are usually done subconsciously, but regardless they effect you.  The book would have a positive affirmation for you  to say often or tap in using the EFT Emotional Freedom Technique.  You can YouTube how to do this, it is easy to grasp and speeds up the process.

I bought myself a book that was very similar, Heal Your Body by Louise L. Hay.  I have found this book to be very helpful.  It doesn't mean the pain goes away fast.  I am sure it has a lot to do with how deep you have buried your emotions, but I love knowing there are answers, and the negative thoughts usually make complete sense.

I am still working on being more in tune with my body, but I am a work in progress.   I know there is so much  more to this life than just living here.  There are reasons for everything, and I am trying my hardest to listen with an open mind and heart.

FREE!

My friend's husband has RA and takes Enbrel as well.  She told me this year about Enbrel Support.  Basically, it has nothing to do with your income.  After your insurance pays there portion, then Enbrel Support kicks in and pays the rest!

I called and took their little survey and lone and behold, I got it FREE for about 6 months!  I was elated to here that  my medication was not triple my car payment.

No I can be pain free and not worry about racking up our credit cards.  It is amazing how fast a not expected expense of $600 adds up over the months.

Thank you Enbrel Support for being there when I needed you most, not to mention the amazing drug!

After this 6 months there is a charge monthly for each pack of 4 shots, but I think it is only $10 which I can afford.

I love being out of pain, and being "normal".  Thinking back to how bad it is still makes me tear up, so apparently I'm not over it yet.  I certainly should be over it!  I don't suffer from pain anymore unless I am not fast enough to do a shot, but then it is so minimal considering what it was.  So thanks again to Enbrel Support for helping us financially and physically.

Money Issues

Now that I had the miracle drug, I realized I was now paying almost an arm and a leg to get it.  Thank goodness we had insurance.  I believe the cost without insurance for 4 shots, that would last one month was $1,800.  Luckily we had insurance, so our cost was $600 for a one month supply.  When I heard this, I cried.  I didn't even know if this drug would work, and now I was paying $600 a  month  and taking a shot every week.

All I could think, was if I had an extra $600 in my pocket every month, we would probably had paid off our cars.  How was I going to do this.  We managed to purchase the shots, and I took one weekly for about 4 months before I felt super strapped.  I decided to leave a few shots in my fridge and not take anymore until I was in pain again.

I managed to go without a shot for a year, before the pain came back.  And then every time I took a shot it would give me another 6 months and slowly they got closer.  I now do a shot every month pretty much to the day, otherwise I can't walk and it escalates very fast.

It has taken me 7 years to figure out what the on coming pain feels like.  I always thought I worked out wrong, or ate the wrong food, and would just push through the pain until I was almost in tears, and then would realize I needed a shot.  I went a year a Crossfit blaming the Kettle Balls and the box jumps for my pain.  Since we did not do the same thing daily, it would be coincidence that I would hurt the day after doing these activities.  Then I would miss work out days and start to modify my workouts.  Slowly I figured out that Crossfit had nothing to do with it.

My shots use to also kick in overnight.  But If I don't do a shot the day I start feeling pain, then it takes a couple days to kick in, which is NOT fun.  So paying the money for me is worth it.

Food Sensitivity

During the many years before diagnosis, I noticed that certain foods caused my pain to double withing 30 minutes of eating it.  I tried to figure them all out, in hopes to eliminate my pain all together, but that never happened.

I do recall wheat or gluten being one of the big ones for me.  Bread, noodles, even soup would make my hip pain so bad that even the thought of moving would make me want to cry.  Sugar of any kind, except the fake kind seemed fine.  I would use any artificial sugars in my coffee and be fine.  Tomatoes were one of my favorite foods, but would send me through the roof.  No more red pastas, or salsas.  Pretty much my two favorite kinds of food were my worst foods to eat.  No Mexican or Italian foods.  I went through major withdrawals with all my food luxuries being stripped from my diet.

One time I made my kids Top Ramen for lunch.  I love Top Ramen, but seldom ate it due to the super high sodium and calories, but I did let me kids eat it.  Sometimes they would not eat all of it and it would be left in the pan.  I recall cleaning the kitchen and taking just one bite of the Ramen.  I wanted the flavors, and warmth in my mouth.  My mouth was so happy to taste it, and the I remembered the results from just one bite of Ramen.  I went straight to the sink and spit it out.  The hours of my pain doubling was NOT worth that bite of heaven.

I felt like everything caused extra pain, and I could not narrow down all of the foods, so I lived on a lot of avocados and popcorn.  At least I could have those two favorites.  I lost a lot of weight, and loved how I looked, but hated the pain that took me there.  I went from a healthy, athletic, and active 140 lbs to a small frail weight of 116 lbs.  My sister commented once on what a great diet it was and at least I was and how nice that would be.  I told her I would rather be heavy and never deal with this pain again.

Because I Can

After going so long without being able to move without pain, I was very grateful once I was pain free.  My babies were young, and I was a stay at home mom.  I started going to the gym 5 or 6 days a week, and putting my little ones in the day care.  They were too young to retaliate like they are now.  My baby was probably 5 months old.

I stared doing Spin class every day.  Since the gym I went to was sponsoring a Triathlon, they were incorporating Spin with a run before the class and swimming after the class.  I jumped on this ban wagon and was determined to do my first triathlon.  I was never a runner or a swimmer, but I did my best to get better.  I trained all summer for this event, and even bought me a beautiful new road bike.  All I had was a mountain bike, and that would just slow me down and make it even harder for me.

My motto had become, Because I can.  There are so many people out there that can't workout due to pain or a disability, but I could, so I did.

I accomplished my first Triathlon and felt great about the whole thing.  I had a great support group at the finish line.  My husband with our kids, my mom, brother, in-laws, and even a few friends came to show their love.  What a difference it made to have so many people come support me.

I went on to continue to run.  I worked my way up to a 10k, and did many of them in this area.  Someday I may do a half, but that is still far fetched in my brain.  I like my 2 hour runs, they are perfect for me right now.  As long as I am not being a couch potato, then I am better than I was.

Difficulties Caring For My Baby

Before diagnosis it was so hard to take care of my second baby.  I recall many times giving her a bath and not being about to get her out.  I could not lift her, and not because of my muscles, but because of the connective tissue disorder.  I recall holding under her arms and  pulling her out.  She was good for me and must have known I couldn't lift her, but she couldn't get our herself, she could barley sit by herself.

The stairs were a nightmare to climb, I usually crawled up them when no one was around.  The times when we had company, I would go up last and pretty much pull myself up on the railings, or I would just not go up at all.  I tried to move as little as possible.  If I sat still, and only moved my upper body, I was pain free.

With connective tissue disorder it is like the muscles are working against each other.  This is how my doctor explained it.  When one muscle flexes, the opposite has to relax, but mine didn't.  Every time I tried to move my leg at all, every muscle in my leg would flex, or tighten.  I found it much easier when sitting to lift my leg with my hands.  It became habit.  I crossed and uncrossed my legs by lifting my leg with my hands.  My right leg was 2 inches smaller than the left one.

The baby room was upstairs and once I got her out of her crib, I would sit her on the ground and pull her down the stairs with me.  I couldn't go down the stairs while holding her, I needed my arms to carry my weight using the rails, or to go down on my butt with my baby.

During the day I had her sleep in a pack and play in our office for naps.  I only went upstairs when I had to.  I kept her clothes in my room as well.  Anything to ease my pain was worth it.

My Miracle Drug

My doctor gave me two options for drugs, one being Enbrel, and the other being Humira.  He said they were just different brands, but worked the same and cost the same.  I chose Enbrel, and looked forward to getting my prescription filled so I could be pain free again.

Doctor Gremillion said Enbrel is a shot that should do myself and weekly, then after a few months when I felt like it to stop taking it until the pain came back.  He said this way I could see how long a shot would last me.

Hearing this was a shot mortified me.  I hate shots, and have a very low tolerance to pain.  I almost would rather be in pain than to have a shot.  I sucked it up and decided all the pain being gone would be worth a 30 second shot.  Once I was home I tried to give it to myself and couldn't do it.  My sister in-law, bless her soul, would come over and give me the shot in my arm every week.  Finally after my husband watched her give me a shot, I was comfortable with him doing it for me.

The pain was gone the next day!  It was truly a miracle drug for me.  I slept great, and walked as if there was never any pain to begin with.

My Beginning Symptoms of Reiter's

Twelve years ago I had been happily married for 7 years, and did not have kids yet.  I was working and going to school full time.  We had a great life, I believe some people call it DINK (double income no kids).  We traveled and played often.

I started having what  I called hip pain, but now I know it was connective tissue pain.  I limped when ever moving, and hurt really bad.  I figured it was due to working out, or that I had put some kind of strain on it.

I started seeing chiropractors, and doctors, and any natural healer I could find.  No one seemed to find anything wrong with me.  I had blood tests, x-rays, cortisone shots, and whatever else they threw at me.

This went on for 2 years before I got pregnant.  Once pregnant for about 12 weeks, the pain was gone! I hadn't linked the two, but I was just happy to be pain free.  I had a great pregnancy, no sickness, no pain, no problems.  I did request from my doctor to let me take progesterone during my first trimester.  I had had three miscarriages prior and was told that this might help.  I took it and held onto the baby without any problem.

After by baby was born, I breast fed for about 8 weeks and gave up due to everything I ate caused her to SCREAM.  I never went on a all vegetable diet, but I know pretty much every time she nursed about 10 minutes later I paid for it.  Anyhow, about 12 weeks after she was born all my pain came back.  I thought it was because I had quit breast feeding, and I was sure that on my next kid I would keep nursing as long as possible to keep the pain gone.

I started my journey for a cure again, and got no where.  I lived on VIOXX which in my head was a miracle drug.  Anything that took the pain away was great.  Soon it was off the market and I had to result to Ibuprofen (which hardly worked) and what ever drugs the doctors thought would help.  I had muscle relaxers for sleeping because my back would tighten up so bad I would toss and turn, and cry nightly.  I had Loratab and helped me sleep a little.  Sleeping was miserable for me, I would sleep in our recliner often, or take hot bathes in the middle of the night and just cry and cry due to all  my pain.  I couldn't find anything that worked.

WOW just thinking back is making me cry.  All the pain I went through and nothing to fix it.  I contemplated shooting my self many, many, many times.  I thought about taking lots and lots of pills, but worried they would just make me sick and not work.  The only thing that kept me from killing myself was my sweet little baby, my mom and family, and husband who was so good with  me but knew he couldn't help.  My baby didn't deserve for me to be so selfish.  what would she do without a mom.  How selfish could I be to take that away from her.  Here I sit crying, just thinking back on how bad it was.

Diagnosis of Reiter's Syndrome

After three more miscarriages, we finally got pregnant and started back on the Progesterone pills, and we were able to carry our second baby to full term.  Again the pain left while pregnant, and I slept great, and walked as if nothing was wrong with me.

Auto immune diseases go away while pregnant, now I know, and gets worse after each pregnancy.  I nursed my baby past 12 weeks, but the pain came back pretty much to the day.  It came on slow, and quickly got worse than it had been.  My right hip hurt so bad, I wanted to cry every time I moved.  My left knee started to swell, and had a lot of pain.  My middle toe on my right foot was swollen and looked oddly huge, and the bottom of my feet hurt so bad to stand on.  Any pressure on them was agonizing.    

The doctors in my home town took blood tests and saw that my inflammation levels were extremely high, and I was showing positive for Lupus which I clearly did not have.  I knew someone with Lupus and I did not have any of her symptoms.  They also thought I had Rheumatoid Arthritis, yet all my signs proved it wrong.  My joints never hurt once.  There was not a Rheumatalogist in my home town, so I made an appointment with one 5 hours away that my doctor had recommended, Dr. Gremillion.

Finally a breakthrough!  This doctor took my blood and examined my symptoms, and put it all in a computer data base, and lone behold my diagnosis popped up.  

Reiter's Syndrome is a rare form of Rheumatoid Arthritis that attacks the connective tissue, and is only found in the lower part of the body, and zig zags across the body like mine did.  I guess I needed every symptom in order for it to be diagnosed.