Sunday, November 10, 2013

8 Things To Know About Fibromyalgia

I just read this great article from AARP about Fibromyalgia. It's really nice to read an article that is positive and doesn't make Fibro out to be an illness that is only in your head.

8 Things To Know About Fibromyalgia


Tuesday, October 15, 2013

The fastest appointment yet

Yesterday was my rheumy appointment. I swear it was the fastest I have ever had. Normally this is a bad thing in my eyes, but this time it was great.

The Actemra is working, so I am feeling much better. Not as tired anymore. I don't need my afternoon nap very often now. I can make a fist with my left hand and almost a fist with my right hand.

The Tramadol takes away most of my pain. I still have little aches, but those I can deal with or almost ignore. The only time they really bother me is when it is going to rain or snow.

Two weeks ago I had my monthly blood work done and it showed that my cholesterol is awsome now. Thanks to the Simvastatin. My levels in everything are perfect. My dad takes it as well and says it is a miracle drug. I guess it is.

My liver levels, however, were not so great. They were very high. Almost three times higher than my normal levels. This freaked both me and my doctor out. He asked me to stop my methotrexate and we will repeat the blood work later. The Actemra can also raise your liver levels like the methotrexate can. I was praying that the Actemra was not the cause. I finally found a medication that is starting to work and didn't want it messing things up.

Yesterday at my appointment, we went over my blood work and he gave me my orders for another to test and see what my liver levels were at now after not taking the methotrexate for a couple of weeks. I got a call a few hours after getting the blood work done (I love how fast this lab is) and the doctor was happy to announce that my liver levels were back to normal. He asked me to stay off the methotrexate. Thankfully the Actemra can be used without the methotrexate.

Tomorrow is my next infusion. Looking forward to it. So sad I think. LOL


Friday, October 4, 2013

My Allergist Appointment

My appointment with my allergist was on Wednesday of this week. I got there 40 minutes early thanks to the directions on Mapquest. Anyway, I waited in my car for 20 minutes, then went in. I figured I had to fill out some paperwork. Boy did I ever.

I had a breathing test done first. I am asthmatic and have been since I was like 7 or 8. Anyway, what I though was good breathing, really wasn't. After that, I went into the room where I spent the next hour talking to my allergist about everything any anything that has triggered any kind of reaction to me since I was born pretty much.

I told her how my dad is deathly allergic to bees. He was legally dead for 4 minutes when he got stung once. I had a reaction when I stepped on a bee last summer. My asthma kicked in almost right away.

We went over everything I did this past weekend to try and see what might have triggered the face swelling. Right now, it is narrowed down to a food allergy (no kidding), more than likely nuts. Seeing how the Texas Roadhouse restaurant I was in has peanuts all over the place, and I ate some, that is more than likely the issue.

We also went over my current treatment of my asthma and made some changes. She added a spacer, something I haven't had since I was a kid. She also added Symbacort, but only if using the chamber with my Flovent does not make things better.

My Dr. also prescribed an EpiPen. This kinda freaked me out. She said that the swelling was a serious reaction and the next time I might not be so lucky. So now I have to carry around the epipens ever where I go. I had to ge a bigger purse so that they would fit in with all the other crap I carry around.

In a couple of weeks I go back to get my venom testing done to see if I am allergic to any bees. A couple of weeks after that test, I will have the skin test done to see what else I am allergic to.





Wednesday, October 2, 2013

Lots going on

I know I haven't posted here in a month, but lots of things have been going on here on the homestead that took me away from blogging so much. I have blogged a little on my main homestead blog though.

As for my health, well, I still have the rash on my back, but very little of it left. My rheumy said that it probably was not shingles and that it must be just some dermatitis. So, now we have no clue what this rash is from. It is still itchy like crazy though.

Sunday morning I woke up to a surprise when I looked into my mirror. My cheeks had swelled up so much, I looked like a chipmunk hoarding nuts. It didn't really hurt unless I touched my cheeks. Mostly tender around my jaw line.



This is a before/after picture to show now much I swelled up. The lighting was bad in my swollen picture, so that is why I am orange. The swelling was so bad that every time I bit down to eat, I bit the insides of both my cheeks. It hurt a ton, plus certain foods aggravated the cuts. I haven't eaten much because of it. Lots of soft foods that I don't have to chew, like apple sauce and yogurts.

I made an appointment with my primary dr to see her on Monday. Worked for me seeing how I was going to be in the area at the Apple store to try and get Matt's ipod fixed. No luck there. When my dr first walked into the room, the first thing she asked me was if I had mumps. She would not approach me until I told her that I had the immunization as a kid so this probably is not mumps. I might want to get a booster shot for it just in case. A friend of mine told me that lots of the immunizations we were given as kids, really did not do much for us and that for her personally, she has very little immunity built up to certain "childhood" illnesses.

My primary asked me a ton of questions and then called the head allergist at Mass General to ask what he thought it might be. He said maybe Lupus, but he wanted to see me. He also asked me to load up on either Benadryl or Zertec. Seeing how I take Zertec daily, he said to take 2 instead of my usual 1.

While I was eating lunch, I got a call from his office to make an appointment. Of course the receptionist I was talking to had no clue why she was calling me to make an appointment and when I tried to explain it to her, she was still clueless. She said that I could not be tested for anything unless I was off all allergy meds for at least days. I told her that I was told by the dr there to load up on Benadryl. She decided to put me down as a consult.  I'll just explain everything to the dr again anyway.

Well, off to my appointment. I'll let you all know how it went when I get back.


Tuesday, August 20, 2013

Little excitement today

Well, sort of exciting.

I have had this rash on my back for the past week or so. The hubby has said it is getting worse and I need to call my rheumy to make sure it is not an allergic reaction to my last infusion.

I call my dr and talk to the nurse. Told her what was going on and she said she will give the message to my rheumy and he will call me back.

Not even 5 minutes later, he calls me back wanting to see me in an hour. I so didn't want to have an allergic reaction to this medication because I believe it is working. I mean, I did manage to shuck a few dozen ears of corn yesterday and then cut the kernels off the cobs tonight.

I get to my appointment and my rheumy takes a look at my rash. He said it is not a rash of an allergic reaction. Whew! Thank God for that!

However, it looks like a shingles rash. Joy of joys! Just what I need. I is really itchy and it burns. I do not feel any pain however, but my Tramadol ER could be masking that up. At least I know the pain meds are working. last thing I need is to be in even more pain. Between my fibro and RA, I have enough pain to deal with.

My rheumy gives me a prescription for some medication to calm the shingles down. My understanding is it will always be in my body and it could flare. With my immune system soo suppressed between the methotrexate and the Actemra, the shingles decided to rear its ugly head and join the party. So now I have these huge horse pills that I have to take 5 times a day for the next week. As if I needed more pills to take. Grrrrrr. Oh well.


Tuesday, August 13, 2013

Not feeling so good

So, yesterday was my first Actemra infusion. I have had many infusions before, but this was a new medicine.

I came home from my appointment and went in and laid down in my room. I started to nod off a little and my body started to feel very heavy. It took some effort to life my arms and even keep my eyes open. When Steve came home from work, he came in to check on me. That was when I really noticed I was "heavy". I did get out of bed and was feeling okay otherwise.

Today I have a headache. Nothing bad like the migraines I use to get, but it is still annoying. One of the side effects is a headache though, so no worries there. It did take me a bit to get out of bed today. More so than normal. I figure it is just because of the medication I had yesterday. I have always been tired after having my infusions anyway.

Matt and I ran a couple of errands today and stopped at Subway to get a late lunch. Now, I am back in bed, really sore (my lower back and hips have been hurting me all day), and watching tv. I hope I feel more normal tomorrow. I have to do my food shopping then.



Monday, August 12, 2013

My first Actemra Infusion

After fighting with my insurance for a few weeks, they finally approved the new infusion medication. Today was that appointment. It couldn't have come soon enough. I was a few weeks over due from the last Remicade infusion and that one started to wear off a couple of weeks before my next one was due.

My appointment was for 12:30. I am use to having my appointments at 8:30 in the morning. I tend to sleep through them as well. The Remicade infusions last 3 hours, where the Actemra lasts a little over an hour. Soo much nicer.

I get to the infusion center in the hospital and in my chair and my nurse, Cindy, gets me all hooked up to the IV and starts the saline drip. Normally when Cindy puts the IV needle in my hand, it doesn't hurt, just feels odd while she moves it in my vein. Today it really hurt. It wasn't her fault, it is just my body being stupid. My fibro has been bothering me lately, so I figured that was the reason for the pain.

Cindy goes over the new meds and the process and such. She said that mixing the Actemra was a lot faster than mixing the Remicade. Well, she wishes she never said that. It took about an hour to get the meds. There was a question about the dosage because I lost weight since my last infusion (I am now 173 lbs). Once that gets all figured out, the meds showed up sometime after.

I had my iphone with me as well as a magazine to help pass the time. I read a little and played Candy Crush and solitaire on the phone. I did get tired and wanted to take a little nap, but I knew I wasn't going to be there that long, so I never did.

Once the infusion was over, I had to wait 15 more minutes to make sure I had no reaction. I only had to do this today, because it is a new medicine to me. All the future Actemra infusions I won't have to wait. I had no reactions, but I do have a headache now. I just think I am dehydrated though. I am also super tired, but that is because of the lack of sleep I have been getting. Getting old sucks. Oh well.


Wednesday, August 7, 2013

Very informative segment on The Doctors TV show

I don't normally watch this show, but a member of the Squeaky Joints group posted this little segment of the show. It is all about Rheumatoid and Osteoarthritis. I found it very wonderful and not telling us about any "cures" for it (like on Dr. Oz). It tells it like it is.

Arthritis segment on The Doctors


Oh and by the way, there is not cure for Rheumatoid Arthritis. But if you are reading this blog, than you probably already knew that.


Finally!

My insurance finally approved my Actemra infusion. Took a couple of weeks. Just made my appointment for Monday. It's later than I would want (at noon instead of early am), but I don't care. I am sooo ready for this. Been so sore recently. I am praying that this is the medicine that works for me and maybe put me into remission. That would be the best day ever.

Monday, August 5, 2013

So frustrated with my insurance company

I got a letter a few weeks ago from my insurance company saying that they have denied the Actemra infusions saying that they are not medically necessary. Of course seeing that in writing, pissed me off big time. I went on a tangent.

Apparently my rheumy knew about it a week or so before me and they have already started the appeal process. They have provided Cigna (my insurance) all my medical info that shows how none of the medicines I have been on work for very long, if at all. It has been about 3 weeks and we still have not herd a nay or yay.

So, right now, I am just on methotrexate and tramadol. I am very sore and very tired all the time. Thankfully the pain medicine does take most of my pain away, just not all of it. It hurts to walk, my hips are always hurting and my fingers are stiff and swollen pretty much all day. The Remicade did do a little for me, because I am hurting more than before when I was on it.


Today's Rheumatologist appointment 7/15

You know when your rheumy calls himself a couple of hours after getting blood work done, that it is bad.

At my appointment we talked about stopping Remicade and starting Actemera. Fine with me. The Remicade has stopped working anyway. When I had the Vetra DA test done, the part of my inflammation that was raised, the Actemera blocks, so it makes sense to go on it. Only issue is, Actemera raises your cholesterol levels.

Last year my total cholesterol was 164. Today it was a little over 200. Ugg. I have been eating better, or so I thought, and exercising more. Walking and working in the garden is what I do for exercise right now. Been thinking of adding gentle yoga into my daily schedule. I had done yoga for years when Matt was younger, but life got busy. You know how it is.

My rheumy also said that my inflammation markers were higher than last time. Like I didn't already know that. I can feel it in all my joints and muscles. Granted the muscle pain is my fibro, but when I am having an RA fare, my fibro likes to kick in too. Double whammy of pain. Fun times.

So, today I got two new pills to take. One to keep my cholesterol down and one to help with my nausea and heart burn. That's a total of ten pills to take on Mondays and 9 pills to take daily the rest of the week Man getting old stinks. Who knew that 36 was old? I am getting sick to my stomach just thinking about this.

My trigger fingers thanks to my RA

One of the problems that I have been having from my RA, is my trigger fingers in my right hand. Not only are all my joints swollen and inflamed, but so are the tendons in my hand. I can not grip anything with my right hand or I risk them getting stuck. Of course I am a righty, so this makes things a bit annoying. Today, I was scrapping some food into the trash when my hand got stuck. This is what it looks like:





Sorry for the blurry picture. It was kind of hard to take a picture of my hand with my left hand. As you can see my ring finger is the one that is stuck the most. My pinky finger tends to turn in and twist and my middle finger bends a little at the top joint. When it gets stuck, I have to massage the palm of my hand to see if I n get the fingers to go back to normal. The longer it stays bent, the more it hurts.

Once I manage to get my hand back to normal, I try to keep my hand as straight and flat as I can. I tend to keep my hand open and resting on my leg or bed.

At night, I have to wear a brace so that my hand does not get stuck. Nothing worse than waking up at 3am because your hand has been stuck for hours. It hurts like the dickens. So thankful that my husband is so understanding and will sit there and hold me or rub my back while I cry from pain and frustration.

The brace goes from the second joint of my fingers to the middle of my forearm. It is velcroed on.  It isn't to terribly uncomfortable, but I hate having to wear it. This is what it looks like:







There is a little pillow inside the brace that my fingers rest on and keeps them in a comfortable position, so that the fingers aren't totally straight.

The only thing that seems to help keeps my fingers from curling up is a cortisone shot in my hand. I had one a year ago and it worked very well, up until about 2-3 months ago. Thankfully I see my rheumy on Monday, so I can ask him to give me another shot.


First published 7/10/13


Vectra DA results and what to do next

Last week my rheumy asked for me to get a new blood test called Vectra DA. The vampires take out three tubes a blood a month, what's another one. So I had the test done. Easy peasy for something that costs 900.00. Thankfully insurance covers it or I would never have had it done.

What the test does is gives a number to my RA's activity level. Lower the number the less active it is. I have been feeling pretty good recently, but that could also be this high dose of Tramadol, so I figured my RA was under control and that the Remicade has been working.

Boy was I wrong. I get a call today from my rheumy (it's always bad when he calls) and he tells me that according to this test, my RA is still very active and not as under control as we thought it was. He said that there is still a lot of inflammation that the normal blood work has not picked up.

We talked about what to do next. I am at the max dose for Remicade, so there is not raising that up. I asked him if we can make it every 4 weeks instead of every 6. He would like me to go on Actemera. It's a once a month infusion that only takes an hour to do instead of three hours like my Remicade infusions. It also goes after a different protein in my body that the Enbrel and Remicade do not. My rheumy said that this particular protein is very high and the Actemera is made to go after that.

So, for now I am having my Remicade raised every 4 weeks while I think about switching biologics. I just hate to hear that another medicine has failed. Having RA sucks. FURA!


First published 4/24/13


My MRI and the results

So, this past Tuesday I had my MRI. They booked me an "open" MRI because I am claustrophobic. Thank goodness I had them book it, because if this was the "open" MRI, I don't want to know what the regular one looks like. The tube you go in was still way to closed in for me.

They had me laying on my belly with my arms bend above my head. Because I was having one of my hands done, they had that in a tube thingy all stuffed with pads so that I don't move. That kinda freaked me out. Not having control of my hand. I was given a nice comfortable headset and some nice country music to listen to. Was hard trying to lay still when a good song came on and I wanted to dance. LOL

I spent the whole MRI with my eyes closed tight because I knew that if I opened them, I could see how close the walls were. It was bad enough that my elbows were touching the sides. I was only in the tube up to my chest, but that was enough to freak me out.

30 minutes of loud banging, clanking and whirring, and I was free from my restraints and free to leave. Good thing too cause my neck and shoulders were killing me. I also had an itch from hell on my nose. LOL

Yesterday, my Rheumatologist called with the results. The whole reason I had the MRI was to see if there was any widespread inflammation to maybe explain all the pain I have been in. My blood counts have been good and I shouldn't be in pain.

There was no wide spread inflammation. The third joint of my middle finger was a little swollen and there is damage to the second joint on my ring finger. That I knew. It is very puffy and kinda warped. Because there is no wide spread inflammation and my blood counts show that my RA is pretty much under control, he said that I do have Fibromyalgia (Chronic pain). Guess it is a good thing to know what has been causing my pain and that it isn't all in my head.

I see my Rheumy in 3 weeks and we will go over this more then. *sigh* The joy that has become my life.


First published 3/29/13

My Latest Rheumy Appoinment

This past Tuesday I had an appointment with my Rheumatologist. Of course Mother Nature decided that she was going to drop a bunch of snow on us that day, so I had the hubby drive me. I hate driving in the snow. I should be use to it after living in New England my whole life, but I hate it.

I got to my appointment late, thanks to this moron who was going 15 miles per hour. The roads were not that bad honestly and I only live 10 minutes away from the hospital that my doctor is at.

So, I get called in and my hubby decided to come in with me, mostly to make sure I tell the doctor everything and to make sure I tell him the truth. I have been in a ton of pain, but I am afraid of sounding like a hypochondriac when I ask for pain meds. I know I shouldn't feel this way, but I do.

The doctor asks how I feel. I tell him I am really sore. Hubby looks at me, then at the doctor and tell him that it took me 20 minutes to make the bed the other day and all I did was swear and make noises like I was in pain, which I was. He asks me where I hurt. I tell him my hips, back, elbows, wrists, ankles, feet, toes, hands, fingers, and shoulders.

When he was squeezing all my joints to feel any inflammation or whatever he does. I swear he enjoys doing that just to see me squirm and make faces. He squeezes the tips of my fingers and it really hurt. The tips of my toes have been hurting a bunch too and have swelled up so much that I have blisters on them thanks to my shoes.

He tells me that the tips of my fingers and toes are not normal RA inflammation spots. Same with my hips, back and my shoulder blades. He feels the rest of my joints, my elbows, my knees. My god was I horrified when he asked to lift my pant legs. I was so freaking hairy cause I hadn't shaved in like 2 months LOL.

He doesn't feel any inflammation and the joints are not hot to the touch. All nice and cool. According to my blood counts, my RA is doing good and pretty much under control. He did up my infusions from ever 8 weeks to every 6 weeks and the does from 400 to 600mgs.

He also said that I more than likely have Fibromyalgia, a chronic wide spread pain. Joy of Joys! Something else I do not want. It would explain all the pain in the wrong joints, the extreme tiredness I have and how the pain gets way worse at night. My sleep at night is really bad. I wake up constantly in pain and am always rolling over to try and get comfortable.

I have to have an MRI of one of my hands, my left one hurts the most, so see if there is any inflammation. If there is none, than he knows I do have Fibro. For now, I am going to look into alternative ways to treat the pain, like acupuncture and massage.

He also gave me a new prescription for Tramadol. This time it is the extended release 100mg with the option to go up to a max of 300mg. I took 1 pill (100mg) that night and it really did nothing. I tried the same does the next night, that again did nothing. So the next night I upped it to 2 pills, then I started to notice a difference. I am still sore, but nothing like I was before. I am going to keep it at this dose until I get worse. I seem to always build up an immunity to all my meds. I think most people do anyway.

I am still really tired and sleep still sucks. I have to take my naps everyday and try to take at least an hour long one. Two hours is better, but it depends on when I fall asleep.

A friend of mine noticed yesterday while we were walking, that I seemed to me a bit more chipper. I know it is because my pain was a ton better and so I wasn't so focused on how I was walking so I wasn't in so much pain.


First published 3/23/13


My First Infusion

After trying Enbrel for over 6 months, my rheumy decided to put me on something else. The Enbrel simply did not work for me. It doesn't work for everyone. I hate the commercials for all biologics, like Enbrel and Humira. It makes it seem that if we take this shot, we will be cured. Ya, right. It takes about 3-6 months for them to start working, if they do at all.

Anyway, at my last appointment with my rheumy, he decided to put me on Actemra. It has the same side effects as Enbrel does but it could also raise my cholesterol levels. I have always had an issue with my cholesterol. He did lots of blood work and then called me the next day. Apparently my cholesterol is great, for once. It was 167, down from 264 from last year. Because of the cholesterol risk, he decided to put me on Remicade instead. Fine with me. I have herd lots about it and it works for them.

So, today was my first infusion. I got there a few minutes before my appointment, just in case. The infusion center is a big open room. We have recliners, our own tv's and our own headphones that will stay there. They offered me snacks and something to drink. I was kinda dehydrated so they gave me a bottle of water and gave me intravenous fluids before the infusion. I was even given a nice hot blanket.

My nurse, Cindy was so nice and explained everything to me. She started my iv in a vein in the middle of my hand. She missed the vein or went through it because the saline started to build up in the area around the vein. It didn't hurt but I started to get very light headed almost right away. IV came out and I got put in the blood pressure machine and layed back in the recliner. I was sweating and felt like I was going to pass out. Hate that feeling.

After a few minutes, I felt back to normal and Cindy went back to starting up the IV. Second time was on the top of my wrist. It didn't hurt but man when that tape came off, that hurt.



I guess it takes 30 minutes to mix my Remicade because it goes by your weight, so they gave me my fluids while I waited. I also got a Benadryl and a couple of Tylenol. Good thing I asked my neighbor, Nancy, to drive me. Benadryl makes me tired and I sure was once this was all done.

Once the Remicade was ready, that got hooked up to me. It took 2 hours for that to get into me. I had my phone, a book and come needlework to do while there. I tried to do some of the needlework, but I think me moving my hand, even the little I was, messed up with the IV. I think the alarm on the pump went off like 5 times because the needle kept bending inside my vein. Didn't hurt thank goodness.


So once the Remicade was done, I had to stay an extra half hour to make sure I didn't have any issues. They kept me hooked up to the IV and finished off my bag of fluids. The last hour I was really cold and dozed a little. I was really tired from both the Benadryl and the fact that I was there for over 3 hours. Long draining day. The next infusion is in 2 weeks and that one should go faster, plus I don't have to stay for the extra half hour after.

I took an hour and half long nap when I got home.I think the only reason I woke up was because I herd Matt come home from school. I would have slept longer I think. I am hoping that this stuff works. I am so sick and tired of being sick and tired.


First published 11/6/12


Squeakers Spoon Swap

I found this wonderful support group on Facebook, of all places, called Squeaky Joints. Fits for those of us with RA and other auto-immune diseases. On September 11th the group celebrated its first birthday. As a little celebration, the group admins decided to do a spoon swap. For those that read the Spoon Theory in the past posts about my RA you will understand the reasoning for this.

So, it took me a bit to find the spoon for me to send out. I wanted to find something that screamed Heather. I wanted something that would tell the person who receives my spoon to know a little about me by just looking at it. This is the spoon I found.



It's a spoon that looks like a shovel. I love gardening. The spoon is a pretty good sized and can be used as a tablespoon measure or as a tea bag holder (I love my tea also). Today I received my spoon from a fellow Squeaker. It is a tiny charm on a necklace. It is soo cute! I need to get a bigger chain for it (I like them around 22" so I don't feel like I am being choked. This is my spoon.



I actually wrapped the necklace chain around my wrist twice so this is my hand, not my neck. Isn't the spoon cute? I love it!


First published 9/24/12


Living with Rheumatoid Arthritis Part 3 ~ Daily Life

So, what do I do everyday that is different from everyone else that is not suffering from chronic pain? Please read the Spoon Theory, if you haven't yet, to better understand my daily life and this post.

Now that I am no longer working, my days are a lot less stressful. This is just a brief

When I was working, I would try to get everything done (aka chores) within 3 hours. That includes laundry, dishes, picking up the house, showering, making the bed, sweeping the whole house, any kind of shopping, and making dinner by 4pm. I had to take a nap to function at my late night job, I was down at around 1pm and up at 3pm. I would get home from work at midnight and finally settled and in bed by 2am only to wake up at 7am and start my day all over.

Now that I am not working, I have created a schedule that I try to follow. If something doesn't get done on it, then oh well. I also get up at 6am so that Matt gets up and eats before leaving for school at 7am. I try to be in bed by 11, but that doesn't always happen. This is my daily morning routine:

Get up
Make bed
Get dressed
Eat breakfast
Take meds & vitamins
Brush teeth
Put on make up/moisturizer
Fix hair
Clean bathroom sink
Brush toilet
Do load of laundry
Feed pets
Clean litter box
Wash/put dishes away
Thaw dinner
Pickup & put away
Hot spots
Check e-mail/Facebook
Meditation time

This is based on the book Sink Reflections by Fly Lady. The pick up & put away is the basic picking up things that might be laying around, like a magazine on the sofa. The hot spots are areas in my house that tend to gather clutter very fast. Those areas are my kitchen table, my side of the bedroom (I tend to have a ton of books/magazines on the floor and a drink from the night before).

Again, following the Fly Lady method of cleaning, My house is divided into zones. Each zone gets a one week focus and a deep cleaning. Next week is my kitchen. It is also the week my dad is visiting and the week that the new World of Warcraft expansion comes out. so I may be slacking in the cleaning a lot more. LOL You're probably thinking that this is easy and you can do it in like an hour. Well, this takes me about 3 hours, not including the weekly zone cleaning, any shopping that needs to be done and dinner to cook.

Everyday is also assigned a little list of things that need to get done on that day. For instance, today is Thursday, so I have these to do in addition to my morning routine:

Pay the bills
File papers
Clean out purse (mine is huge and accumulates fast)
Clean out car (my backseat is bad and I have been slacking bad on this)
Clean laundry area

Fridays and Saturdays I try to finish up anything that did not get done during the week for an assigned day. Sundays I relax and go through my coupon binder and new coupons.

This morning I was reading a post that I wrote back in March of 2011 when I was first diagnosed with RA. Man, how my views have changed since then. Back then, I did not want to be on any medication and to do a more natural way. Well, there is no "natural" way that is safe. Even though my joints have not gotten better and seem to be worse, I know the medication has slowed down the damage than if I did not take anything at all. Yes, I hate the side effects, but I also like to be able to walk and use my hands.

First published 9/20/12


Living with Rheumatoid Arthritis part 2 ~ My Medication

One thing about RA is that it is an invisible disease. If you look at me you would never know that I have this life changing chronic systemic inflammatory disorder. There is no cure. Only different medications to help treat it, but it will never go away.

The first course of medication the rheumy started me on was Methotrexate (mtx), as well as continuing the Prednisone. The Prednisone acts like a bridge so that when the mtx finally starts to work, I would be weened off the Prednisone. Didn't really work. Due to the Prednisone weakening my bones (I have been on it many times before because of my asthma), I also take extra calcium and vitamin D.

Over the past year I have come to dread Mondays and Tuesdays. Monday is the day that I take the mtx. It makes me feel like shit, to put it nicely. Imagine your worse morning sickness (or flu for those who never have had children). That is what I feel like, only I don't throw up. It does take a few hours to kick in and then it kicks my butt. I get super ass tired and tend to spend the next two days in bed. Tuesdays I am still tired and nauseous, but I am also in the bathroom. A lot. I will spare you the details. Methotrexate in very high dosages is used to treat cancer such as Leukemia in children. If I feel this bad taking 30mg once a week, I feel for the kids who have to take 1100mg every day.

I started taking the pill form of mtx then changed to the injectable form. I really had no problems giving myself the shot. Maybe at first, but you get use to it. I would close my eyes before stabbing myself in my belly fat, then I would open them and push the plunger. The shot made me more tired but a little less sick. I eventually changed back to the pill form when I learned there was a shortage of the injectable. The kids with cancer need it more than me in my opinion.

Not only does mtx make me feel like crap, but it also damages my liver. I have to have blood work done once a month to make sure my enzyme levels are ok. If they are high (which has happened a few times so far), I have to stop taking the mtx. Eventually a flare happens about a week or so later on. I have to watch my alcohol consumption. Not that I am a drinker, but I do enjoy a margarita during girls night out. My first rheumy told me that I can never ever drink again. He was older, like my dads age and always seemed kind of tired and grumpy. My new rheumy (who is hot and near my age) said that an occasional drink is ok. He said that my girls night out, birthday and anniversary drinks are ok. Both of them also said to not get pregnant. No worries there unless God wants to play a cruel joke on me. The mtx is a very toxic drug and can cause lots of birth defects.

Now, you're probably thinking, "Why don't you take one of those medications they show on tv and be all better?". Well, I am. I have been taking Enbrel for the past few months. What the commercials don't tell you is that it can take 3-9 months before it could work. It doesn't work for everyone and if it does work, eventually it may stop working and then another drug is used instead. Rinse and repeat. It is not a "magic pill" like it seems on tv. So far I don't feel better. In fact for the past few days my ankles have been hurting bad. I know I am in a flare right now. I still have joint swelling and damage being done. I am still stiff and sore. I am still in pain.

Here is all the medications I take just for my RA. Some people take even more than I do.



The orange pills and the vial with the orange tipped syringe are both Methotrexate. I have both forms but only use the pills. The mtx and Enbrel are taken once a week. Everything else is taken daily. They are from left to right, Calcium, Naproxen (I am asking for better pain pills at my next appointment. I have been taking some of my husbands Vicodin at times), Folic Acid, Vitamin D, and Prednisone (which I am not on right now but have extra in case).

Currently I am not on the mtx. My last enzyme levels were extremely high and the rheumy asked me to stop taking it. He called me personally to tell me a few hours after the blood was drawn. Scary times. When he put me on the Enbrel, I asked if I could stay off the mtx. He agreed to see if the Enbrel alone will work. So far it hasn't, so I have a feeling that I will be back on it come my next appointment in November. Uggg.

Off to take a shower and use up a bunch of spoons.

First published on 9/7/12



Living with Rheumatoid Arthritis Part 1 ~ The diagnosis

What does the face of Rheumatoid Arthritis look like? This does.




This is me last year sometime. I am 36 (will be 37 in 3 months Ack!). I am a wife, a mother, a sister, a daughter, a friend. As you can see I am not elderly. RA is not an elderly person disease. Anyone at any age can get RA. Women have a higher tendency to get it and it may be hereditary. My grandmother and great grandmother on my mothers side both have/had it. My mother does not, she has another form of arthritis.

I was diagnosed with Rheumatoid Arthritis in April of 2011, but I suspect I had it way before then. I can remember back in December of 2010 I had this intense shoulder pains. It felt like my arms were being ripped from their sockets. Being the usual stubborn me, I put off going to the doctor. I hate them. I would go for my yearly physical and whenever my asthma was bothering me, but I figured I just pulled something or slept wrong.

I finally went to see my primary doctor (whom I love and have had since I was 18) in February of 2011. She didn't suspect RA at this point and thought the same as me, that I might have just pulled or sprained my shoulders. She gave me a prescription for Naproxen. I was to take 1 pill twice a day and to call her if it does not go away or gets worse. We all know how much I love the phone, so we know that never happened.

I took Matt on an over night trip to the Museum of Science in Boston with the Cub Scouts towards the end of February. I was in so much pain then. Sleeping on an air mattress on the museum floor and carrying around my purse (which is a wanna be Vera Bradly bag that I got when I worked at CBD). It's a rather large bag and I had it filled with snacks, a couple of water bottles and my usual stuff (wallet, book, Kindle (yes both a book and Kindle), planner, meds and other little things).

Next change came to my middle finger on my right hand. The middle finger joint was purple and swollen. I got a kick out of flipping people off to show them my finger. LOL. It hurt to write (I am a righty of course), eat, type, use it for anything period. This kind of freaked me out and when I showed it to my mom, she mentioned I might have arthritis.

So, off to my primary doctor I went. She scolded me for not calling her months ago. This was the end of March at this point. My shoulder was still hurting, but by this point, I got use to dealing with the pain. It was still there, but I just toughed it out. Well, when she looked at my finger, the first thing she said was that I might have RA.

Blood tests were done and the next day Dr. Rodman called me herself. She never ever calls. Normally I get my test results in a message via this system her office uses then a letter. Maybe her nurse calls, but usually not. Well, right away this had me super ass freaked out. She said that my RF factor was very high and she had already set up an appointment for me to see a Rheumatologist the next month.

April comes around and I go to my first (of many) appointments with the Rheumatologist. I felt odd in the waiting room. I was the youngest person there, well my son was, but he does not count. I meet the doctor and he goes over soooo much stuff that my head was spinning. He recommended a book from the Arthritis Foundation to get, which became my "bible" of sorts so help me get the basics of what I have. I still flip through it every now and then. He gave me a ton of pamphlets to go over and we talked about different medications out there. He was giving me 2 weeks to think about and absorb all I could. I left with a prescription of Predisone, which I have been on a ton before because my asthma.

More blood was taken, pee'd in a cup and had a bunch of x-rays done. Mostly of my hands, shoulder and my lungs. Because I am an asthmatic and RA can affect the lungs, he needed a baseline shot of my lungs.

Well, my hands are killing me now. I know I used up a ton of spoons to type this post. Read this story about the "Spoon Theory" to understand what on earth I am talking about.


First published 9/6/12


Sunday, August 4, 2013

Moving my RA posts to here

It's going to be a few days, but I am in the process of moving all my RA posts from my main blog to here. This blog is dedicated to all the things I have to deal with while on this "adventure".