Living Day-By-Day With Rheumatoid Arthritis

Its been a while!

2018-03-08T12:34:00.002-05:00

Wow - it has been a LONG time since I have done a blog post. To be honest - it was hard to keep up with. We had a growing family - working full time and dealing with being sore and tired all the time...just caught up with me. I still deal with RA everyday and it feels harder and harder. My wrists are the worst - they barely bend now - its frustrating when the kids don't understand why I can't do certain things. I now use CBD oil to help with my RA. Its wonderful. None of the nasty side effects of pharma's. I use a CBD cream on areas that are painful if I overexert myself. The oils I use you can find here www.beyounow.myctfocbd.com. I hope to start blogging again at least regularly...hope everyone is living as pain free as they can!

Lifestyle

2011-10-24T15:04:00.000-04:00

Ok...so I finally saw my new Dr. He was very nice and so far I am happy with him. We agreed that for right now I can stay off meds...and he just gave me a script for Naproxen to take as needed. So...I am thinking that a lifestyle change can help. Diet, exercise and supplements...

So...give me your thoughts...what has worked for you to manage your RA?

-L

New Doctor

2011-07-22T18:50:00.003-04:00

So, I am finally awaiting a referral for a new Rheumy close to where I am now. Now I am pretty nervous. It has been a while since I have been to a Rheumy and I know that I am worse now. I don't know why I am nervous...I mean I have had RA since I was 2...so this is not new to me. I guess I am just worried they will want to put my on a boat load of medications...also worried that I may not like the Doc. Oh well, I guess I will see how it goes and hope for the best. I need some relief. My wrists can barely bend at all lately and it makes for a pretty hard day at work...then time with kids who want to do all the things I can't. We will see how it goes and hope it all works out!

-L

It has been a while!

2011-05-11T16:59:00.000-04:00

Wow...it has been a while...too long actually since my last post. I didn't even realize how long it had actually been. I have been working a lot lately and when I am at home I am usually spending time with the kids...if not...I am sleeping. Boy...working really does take a toll on your body. I am tired, achy and more miserable than usual :) Can't wait until I have some vacation time this summer. I just want to relax...sleep...maybe do nothing for a couple of days. On a side note...I still need to make a doctors appointment...that is on my to-do list...that I have to make the time for...I need something. I really don't like medication...but sometimes that's what I need. Ugh...back to work I go :(

-L

What the?

2011-03-23T17:49:00.000-04:00

Okay...so the weather has been sooo nice lately. It was not fun to wake up to SNOW this morning! The kids loved it...but me...not so much. Also, I have been feeling more sore than usual this past week. I am going to have to set up an appointment with a Rheumatologist...which I need to find a new one closer to me. I also need to make an appointment with an Ophthalmologist to check out my iritis. I always seem to procrastinate when it comes to making appointments for me...maybe it’s because I really don't like to go to the doctors! When I was growing up I was at a Doctor’s office or the hospital constantly...maybe that's why? Oh well...I have to suck it up and do it! Well...maybe tomorrow :)

-L

TGIF

2011-03-11T13:15:00.000-05:00

So...the kids are napping...and here I am doing work (and blogging...lol). What a week. Back from vacation...back to work and crazy schedules. I have been so sore this week. I was okay before I left for vacation...and I was GREAT on vacation...but now I am in incredible pain?!? What gives? It takes me like 1-2 minutes to stand up straight some days after sitting. And my wrists hurt pretty badly. Maybe it is just this week...maybe I will wake up tomorrow and feel better...hmmm...maybe wishful thinking on my part? Oh well...TGIF anyway!

-L

Vacation

2011-03-08T08:18:00.000-05:00

So, I have just returned from vacation...and I miss the warm weather so much!!! While we were away...it was nice and warm and sunny and I felt great! We all had such a good time. Then we arrived home to snow...and it was cold! Now...I wake up once again stiff as ever...takes me a good 10-20 minutes to get my joints going. My body just feels worse in the cold. Come on summer! I need the warm weather back. It is amazing how much better I felt while away! Maybe we need to move to a warmer climate :)

-L

Valentines Day

2011-02-14T09:36:00.000-05:00

Happy Valentines Day! I remember when I was younger I used to love this day! Chocolates, cards etc...mmmmm. Now it is almost like any other day. We don't do much here for v-day...and I don't expect anything from hubby. He is soooo good to me all year round, he doesn't have to buy me gifts because of a certain day. I am so grateful of everything he already does. He understands my pain, helps me around the house and helps me with the kids when he is not working. I think he feels the same way about me...lol. When I am not working I do the same. We help each other to get things done around here! But he does help me with more of the day to day stuff because of my RA. I sometimes feel like I am getting on his nerves asking 'can you do this for me''can you do that for me''I can't do this' etc all the time! I really appreciate all that he does...well at least v-day has made me really think about how much I do appreciate and love him! And the kids...they just want chocolate! LOL

-L

Snow day!

2011-02-02T09:44:00.000-05:00

Well, looks like today is a snow day. Now...what should we do today? I am going to take the kids out later to play in the snow...unfortunately I am no fun as I can barely walk in the darn snow lol. I am sure they will have fun though! I remember snow days were the best when I was a kid! They rarely happen so this must be a treat for all the kids home from school. My kids are not in school yet...but aer very excited about all the snow!

So the groundhogs did not see their shadows this morning which means it should be an early spring! But how often are they right?! Well, I hope they are right this time! I want the sunny warm days back! I want to feel better and my joints not to be frozen anymore!!! But it could always be worse...

Hope everyone keeps there chins up during this time of year...smile and be kind to everyone.

-L

Doctor Doctor

2011-01-23T17:04:00.001-05:00

So, I am in the search for a new Rheumatologist and would love to hear from all of you.

I know that Doctors vary, and I have heard from some of you and I’d like to hear more. Does your doctor move your joints for you, or ask you to move them? Does the doctor press on joints and manipulate joints to check for any sort of inflammation? Does the doctor take into account what you say about your joints and your pain?

I have had docs forcefully push my joints…past the point they are able to…and have caused incredible pain. Now that I have been thinking of starting with a new doctor I am getting a little anxious thinking about it…since my pain has increased lately.
We all know that RA is incurable, and effects everyone differently to some degree. So, I know for Rheumy’s there is a lot of trial and error for each patient…as everyone reacts differently to different meds, med combinations etc. But, I have had great docs in the past…and some not so good ones. I like docs who are personable and take the time to listen to my concerns etc. All docs should have the patients best interest at heart right?!?!

-L

Winter Blues

2011-01-19T12:50:00.000-05:00

So the time has come for the winter blues. It has now been almost a month since the Christmas holidays and you can tell peoples mood has been changing. Especially now with the extreme cold we have had. I don't find it too bad...but I am so afraid of falling on all the darn ice! I am clumsy enough without the help of ice!!! I find it hard during the winter because I am usually in more pain that in the summer months...and add that to the fact that I cannot do the usual winter activities (ski, skate etc). So I want the summer back!!!

Also - the last week or so, I have been getting sharp pains in my left wrist. My wrists are always painful...but this is different and it is usually when I am on the computer or writing. Could it be carpal tunnel? Hopefully not as I already have trouble at work with all the typing.

I hope everyone is staying warm and happy during the winter months!!!

-L

On a side note...I am now on twitter, and have no clue what I am doing...lol. I thought it would be easier to know when I have added a new post. Click on the follow me on twitter!

Before and After RA

2011-01-14T09:12:00.000-05:00

One common thing I hear from others or read about on other RA blogs is the theme of the "before RA person" and the " after RA person". It makes me think. I was diagnosed before I was 2. I know nothing different. I was never able to do things growing up that all the other kids could do. I could never ice skate...play sports (I would try though) or even participate in some games (red rover). I wish I was able to do those things at least once...or at least without pain. I also wish kids were not so mean about things they don't understand. That was the hardest part for me about growing up with RA...being told I was faking it so I didn't have to participate in Gym class etc. They didn't understand that I really wanted to...but was unable. But when I read about others "before RA person" I think...they were able to do things...they were able to experience things growing up...but then it was all taken away...so they know what they are missing. I see what I am missing...but they have experienced what they are now missing. There are things I wish I could do and would love to try...like running...I would love to run a 5k or 10k...but lets be honest...it won't happen. I have walked a 3k (for arthritis)...but that ended with a lot of pain. I would love to do a cartwheel! I have never been able to do a cartwheel because of my wrists...and it looks like a lot of fun and I would love to show my kids. It will never happen. It looks fun...but I really don't know what I am missing. Is that a good thing? Is it better that I don't know what I am missing. Either way RA completely sucks. Whether you have had things taken away from you...or you never experienced them in the first place...it sucks. I think I just want to complain today...lol :) Well, now I am off to try to play with my boys without getting injured...lol...they are stronger than I am!

-L

Ouch!

2011-01-03T20:55:00.000-05:00

So...these last few days have been the most painful I have had in a while. I am wondering if I am still trying to catch up on my rest that I did not get over the holidays. It seems like everything I do hurts. I was even changing the channel on the TV earlier and it was like my hand was frozen in that position. I had to use my other hand to slowly move each finger away from the remote...and boy did it hurt. It took me a good few minutes to get up off the floor after playing with the kids this morning. My wrists are aching right now as I type. I really hope once I catch up on my sleep and relax a little bit more...this will get better. Is anyone else still recouping from the holidays? What a way to start the new year.

-L

HAPPY HOLIDAYS

2010-12-24T16:09:00.000-05:00

I just wanted to wish everyone a safe and happy holiday...and a pain free, stress free new year :)

-L

Ugh...I feel old!

2010-12-22T16:17:00.000-05:00

I feel so old today...even more old than usual! I could barely get out of bed this morning...not a good start to the day. Then I had to go out to a couple of stores...oh my...craziness!!! My body feels like it just wants to give up today. It seems I am having a hard time with everything I do, or try to do! So not fun. I hope I don't feel this way over the holidays. I want to be able to play with my kids and there new toys and not be extremely tired and sore. Is that too much to ask?!?

-L

Holiday Shopping

2010-12-16T20:35:00.000-05:00

Oh the joys of holiday shopping. This year was easy for me as we went on a family vacation which took care of most of the gifts. But usually I end up going shopping for what seems like way to much time. I end up trying to get it all done in one day...but half way through the day, I am limping and can barely hold the bags I have. Online shopping is great. It takes away most of the hassle.

How do you complete all of your holiday shopping?

-L

‘Tis the Season

2010-12-13T17:17:00.001-05:00

I can't believe the holidays are just around the corner...it seemed to come so quickly this year! I do look forward to the holidays...more for the kids than anything. But I am not looking forward to everything else it entails! The holidays seem to be so busy! I know it is a time to spend with family and friends…but it always seems like we are running around to various houses and parties and boy does it tire you out! When Christmas day arrives…I just want to stay home for a nice quite day. But then by Boxing Day we are out and about again! The get-togethers…the cold weather…uggghh. Am I the only one that feels this way? I hope not…lol J

-L

Working and RA

2010-12-10T20:37:00.001-05:00

I have heard many stories about working and issues with Rheumatoid Arthritis. I myself find it very hard some days to make it through a work day. There have been many jobs in my past that I could not stay with because of my RA. I have also had employers in my past that did not care about how I was feeling and would sometimes hold it against me. I felt like an outsider sometimes. I once read an article that asked 'should you be honest with your employer about your difficulties at work?'. It was debating whether you hold it in and not let them know your situation in fear of losing your job...like not letting them know how bad it actually is…or if you let them know exactly how you are feeling. Either way it can backfire on you. Even if you are near symptom free because of medications or remission…at the end of a long day you can get really worn out. Obviously age, occupation and how long you have had the disease can play a factor in your ability to work. The Arthritis Foundation offers the following suggestions for making it easier to stay in the workplace:

Maintain a positive attitude.
Create an efficient work environment so you limit the amount of lifting, reaching, carrying, and walking you do.
Try not to sit in one position or do repetitive activity for long periods of time.
Set priorities and pace yourself. Do the most important tasks while you feel strongest and most energetic.
Maintain a schedule. Go to bed at a regular time and get enough rest to carry you through the next day.

I find that I try to maintain a schedule…but that is not always easy. And I try to not stay in one position for a long time.

How do you find working with RA? Does your employer know the severity of your RA and how do you deal with it on a daily basis?

-L

RA can make daily things difficult

2010-12-08T16:32:00.001-05:00

So we all know the usual things that RA can make extremely difficult to do…opening jars, door handles etc. But what about all the other things that are taken for granted? I am sure there is a ton that I have problems with daily…but I am now so used to it. Here is a list I have started…

Closing Sandwich Bags (Ziploc)

Snaps on baby clothes

Using dental floss

Tucking in sheets

Typing on a computer

Writing

Walking to the bathroom in the middle of the night

Using clothes pin-type hangers

Putting socks on yourself or a child

Opening the refrigerator door

Opening a drink with a lid (sippy cups)

Taking the gas cap off

Getting up after sitting on the floor

Opening a can of pop

Even carrying a full plate of food sometimes

Squeezing a shampoo bottle

I am sure there are a ton more I can't even think of right now…please keep going and add to the list.

-L

Pain

2010-12-06T14:20:00.001-05:00

Arthritis pain…I find it hard to describe. I usually don't cry when I am in pain…I usually just keep it to myself. I am not sure why I do that. I sometimes don't want to feel like a burden…and if I always talked about the pain…I would be talking all the time…because even between "flares" there is always a baseline of pain to some degree. It's like sometimes the pain just becomes numb. Some people have said that the pain is much worse than I describe and others say I describe it much worse than it is. But aren't there many different faces of RA? We don't all feel the exact same way or same pain. I find so many similarities with others…but no one is exactly the same. We cannot put each other in the exact same shoes…but we do have an understanding about the pain, weakness and other symptoms of this disease. So my question to everyone is…how do you deal with your pain…do you hold it in, do you cry or get upset?

-L

Appearance

2010-12-04T11:20:00.002-05:00

I always run into situations where I meet a new person and we get into the fact I have arthritis…and I always get the same line "But you can't tell by looking at you…you look fine." I know they say it because most of the time it is true. Unless you look closely at my swollen joints or if I happen to have really sore legs that day…I 'look' fine. But why do people feel the need to say that I don't look like I have arthritis? I didn't know there was a specific way to look. Also, I get comments like 'but you are so young'…and when I tell them I was diagnosed at the age of 2 they usually say they didn't even know that kids could have RA.
Does anyone else get these kinds of comments…do you say anything in return?

-L

Brrr…

2010-12-03T14:49:00.001-05:00

What a day I've had so far! I woke up extremely stiff…took me a good 20 minutes to stretch out my joints and get moving. Then I had to go into work early…did the work I had to do…then when I went to get up from my office chair, I couldn't. I had to stretch out each leg slowly as I had been sitting too long without movement…ugh… Some days I just feel so stiff! Then when I was getting back in my vehicle, I hit my wrist on the arm rest and was in tears because it was extremely painful…what a mess of a morning!!! I hope my day does not continue like this! I always seem to be less mobile when the winter weather starts (and rainy days).

I am not looking forward to the winter at all. Does anyone else feel this way? How are your joints in the cold weather?

-L

Continued…

2010-12-02T13:16:00.001-05:00

Ok…so where did I leave off. Well, as I said, I didn't want to be on any medication while pregnant. So, shortly after the wedding I did become pregnant. For the first 12 weeks or so, I felt ok…just really tired and a little bit of nausea…and mild soreness and stiffness! After that – I felt great!!! My joints didn't hurt for the most part and I had more energy. After the birth of my son, I still felt pretty good day to day. I was breastfeeding also…so I was happy to feel good and not need to be on meds. At about 6 months postpartum…it all came flooding back. It felt like overnight my body changed…my joints became swollen again, I was stiff, tired and in pain. Great…just what I need when I have to take care of the baby. There were many times I couldn't even hold him for longer than a minute or so as my wrists would just give out. I went to my doctor and she decided that I should go back on my meds. So, I started taking prednisone again. A few weeks later…my Iritis flared up again. So back on eye drops I go. This was all helping me with the pain…but I was still extremely weak and stiff some days. When my son was about 1 year old…I took myself back off of my meds…we wanted to have another child sometime in the near future. I dealt with the pain on a daily basis…but I really felt strongly about not being on meds…it was my personal choice. The worst part was not being able to play with my boy the way I wanted to. Whether I was on meds or not, he was becoming stronger than me. He was only a one year old – but could easily hurt me when we were playing, or if he grabbed my hand the wrong way. When I did become pregnant again – I was very happy…until morning sickness hit…blah…lol! Once that started to dissipate, I felt great again. My swelling went down and the pain was barely there. My joints were still just weak. After the birth of my second boy…I was breastfeeding again…and once again, about 6 months postpartum…it all came back. And having a 2.5 year old and a baby…it was pretty difficult. My older son is now a lot stronger than me…and we always have to remind him to be gentle with mommy. Thank goodness for my husband who took time off work to help me out. Unfortunately, my wrists and hands are one of my worst affected areas and they do not have much flexibility in them. That makes it hard to do a lot of things. I have sooooo much trouble un-clipping the kids from their cars seats!!! Does anyone else have this problem? It is such a pain sometimes! And simple diaper changes can be a struggle, they don't want me to change them…they usually get there way…or I have to come up with a great distraction. Even sitting on the floor and playing with them can be difficult…especially when I need to get up…lol! It's not fun being able to be hurt so easily from a 2.5 year old or an 8 month old…but it happens all the time! So as of right now, I am not on any meds. I am hoping to hold off until I finish breastfeeding. I am not sure what meds they will want me on this time…maybe an injectable. I will also need drops again for my eye for sure…ugh.

Some days are better than others…so I take it day by day.

I would like to never have to take meds again. Sometimes the side effects are worse! There have been times when I've gone into remission without the help of medication… Sometimes I just want to live without pain and do easy things like open up jars…or even chew gum.

What meds are you currently taking…or what have you had success with? Is there anything 'natural' out there that anyone has had success with?

I also just want to thank everyone for reading and sharing their stories.

-L

My First Post :)

2010-12-01T12:53:00.001-05:00

Hmmmm…where to start. Well this is my first official post. I guess I should start out by letting you know why I decided to start this blog and a little background information. First off, I decided to start this blog as I thought that sharing my day-by-day stories about living with Rheumatoid Arthritis might help others feel that they are not alone. Sometimes I just want to know that others feel or have felt the same way that I do…sometimes you need to feel the support of others and know that you are not alone.

Now a little background info on me. I was diagnosed with Juvenile Rheumatoid Arthritis when I was 2 years old. I was starting to show symptoms around 18 months of age. First, the disease just affected my knees. Then it slowly started creeping into joints all over my body. I was getting blood tests weekly, Cortisone injections regularly as well as being on a mess of medication. The medication also came with some horrible side effects. This was all through my childhood. It was hardest during middle school…you know…the time you hit puberty and everyone hits some sort of awkward stage. This is also when you try to fit in the most. Well, at that time…my arthritis was pretty bad. I could not last a full day at school. I would have to leave by lunch time almost everyday one school year. I was limping so bad and in so much pain I would have to go home and lay down. I was on Prednisone and Methotrexate during this time. The Prednisone was a steroid…and the Methotrexate was also used in chemotherapy. So the side effect of the steroid is weight gain and the Methotrexate was hair loss, weakness, fatigue…etc. So…at this already awkward and crazy stage in my life…I had to battle all this extra stuff. The worst part was the other kids not understanding. I was constantly made fun of for being “weak”, and was often told I was faking it. So I learned to keep my pain quiet…which sometimes was hard…but I would just think about others who had it way worse then I did…and that would help me get through the pain.

By the time I hit high school, I had been in remission for a year or so. And by that time I had developed RA in over 21 joints all over my body. I decided to go off my medication…that I despised taking anyway. I felt good for a while. When I reached 19 I had noticed something was wrong with my right eye. I went to the eye Dr. and sure enough…I have developed Iritis in my right eye. WHAT?!?!?! I had been in remission for over 4 years, this should not be happening to me now! So then I had to start eye drops and if they didn't work…then back on meds I go. After weeks of the drops not working…they decided to put me on oral steroids. Oh great. Well, it finally seemed to work…my eyesight was improving. In March of ’07 I decided to go off of my medication as I was getting married in June of and I wanted to start a family shortly after that…and I did not want to be on any medication when pregnant.

That’s it for now…my wrists are starting to hurt from all the typing! I will be continuing on about pregnancy, kids…etc soon. I hope to be posting daily to the blog…but sometimes it gets pretty busy around here with work and the kids…so I may not get to it everyday. And it won’t always be only about arthritis…I like to rant about a lot of stuff!!!

Please feel free to comment and share your experiences and connect with others just like you living with this debilitating disease, and of course with me!!!