Tuesday, December 21, 2010
Friday, December 17, 2010
Today has been a lazy day I work this whole weekend but they are all 7:30pm-12am shifts, yikes. I'm not looking forward to it. I got xmas shopping done for the boy, his mom & my grandma. Just need to get a few other things for some family then I'll be done! Hope everyone is enjoying the holidays. =)
Sunday, December 12, 2010
Wednesday, November 24, 2010
well happy thanksgiving everyone..."
That was my first update on this post. I decided to edit a bit. So I have had a horrid day quiet honestly. I feel like it passed by so fast that the entire day was filled with .. hm, pain and stress and crying. Made tons of phone calls today, 2 pharmacies, 2 doctors, a few insurance companies, a couple lawyers, and ssi.
Mistake for today? yeah i think i'm more happier when i forgot about all this crap in my life and pretend it doesn't exists, oh except for the days that I shoot myself up, that reminds me of just how serious things are. Seriously way to much to handle at age 23.. oh yeah I turned 23 last week on Nov 18th. I've been officially diagnosed ( by my rheumy) with my RA for 1 year. So happy birthday RA and to me.
what's changed? or whats gotten worse? or better?
I can say that my pain has improved since being on biological medication.. but it's not to the point where I would like it to be. I am still in pain .. a LOT. & the winter weather doesn't make it easier either! I've dealt with a lot this past year. & I still feel like i'm grieving! I can't get over the "why me" phase. Not only am I struggling with RA but also the financial hardships it's caused.
how do you all do it? I always used to be so optimistic, but ever since RA all i am is pessimistic!
Sunday, November 7, 2010
Add me and send me a messenge letting me know who you are :D my username is: enchantedxkiss
Wednesday, November 3, 2010
I hate hate hate you RA for making me unable to work 40 hours a week like normal people and earn more money to pay off stupid bills that I owe. & as I type this my wrists hurt too, thanks a lot for trying to ruin my life.
Monday, October 11, 2010
Hi there zoloft remember me? I took you when I was younger for awhile and trying to deal with my mom passing away well it seems that we are now meeting again, but now for a different reason, you see I have Rheumatoid Arthritis and well... It sucks. & makes me cry a lot and feel just.. depressed. I feel like my life has been stolen from me and it hurts to know I can't do things that I wish I could. Do you think you can help me out again? I feel like this might be a big issue and you may not be able to conquer it for me but my Rheumy insisted I give it a shot today while I started crying in his office. You see depression and all this stress is not helping when it comes to my flares. It's not good for me, so maybe just maybe you can help me get my life back on track?
So I had my rheumy appt today. The game plan is to switch to injectable MTX because I am starting to get very sick from the pills and it horrible, I pick up my MTX vial tomorrow and the boyfriends mom will be shooting me up with that once a week. I went back to my Enbrel sureclick since i'm in school and i didn't wanna have to deal with needed someone else to do it but i'm really hoping this MTX injection will work out better on my tummy. Besides that we covered a few other topics such as insurance changes, and switching to humira which i'm gonna hold off on for now. He prescribed me a anti depressant as you would have read above, let's see how that goes =/ Overall i'm exhausted just got home from school waiting for my food to cook then i'm off to bed and have school in the morning. Hope all of you are doing well.
Wednesday, September 29, 2010
Wednesday, September 22, 2010
Wednesday, September 15, 2010
Has anyone else had skin problems with prednisone?
I'm on two other new meds as well that I started up around the same time but i'm pretty sure it's the steriods.
Meloxicam (1 a day) which I have been taking regularly
& Tramadol (up to 3 a day as needed) which I havent been taking.
I was taken off of diclofenac because it wasn't helping any.
Anybody else experience skin problems due to prednisone? I don't think it's stress because that's stayed the same and I haven't changed laundry soaps, I use tide free and clear.
Monday, September 13, 2010
Now looking forward to the switch on dec 1. :)
Friday, September 10, 2010
What else do you guys recommend having for the winter?
Oh & I got the Flu Shot today from Target also, it was free since I work there and it was a special deal they have going on for Team Members. I was kind of iffy about it but after doing some research I figured it was best for me to get it.
Thursday, September 9, 2010
Dealing with state disability is such a drag i've only received 1 check from them so far and it was only for august 21-26. So i'm still waiting on my next check that should be two weeks this time. I hope it comes soon. I get paid tomorrow but due to me not working so much my check is a dollar short of my car payment, thankfully it's not more then that. So i'm still able to pay it. God i'm so stressed! I was so tired today from working last night that I skipped classes today and went to work tonight because I just couldn't get out of bed this morning.
On a brighter note I called Humira to set up the patient support program and what not. I still don't have an appt set up with my rheumy yet because of my SLOW insurance ugh. && as of dec 1 i will officially be off my dad's insurance and on my own through work. It's going to be about 32 bucks each paycheck but at least I can continue my medications. My rheumy visits will spike up from 15 per visit to 55 freakin bucks. Ouch. Looks like i'll be seeing him as little as possible.
Tuesday, August 31, 2010
I started school yesterday night. I'm taking Human Reproduction monday nights 6 to 9p. Then Tues/Thurs I have a journalism class and geography with a lab from 8am-12:35pm so it's not to bad but still more then i've been used to. I just want to get my AA in the spring i'm almost there!
First night of school went well, I find myself doing better with night classes compared to early morning. This morning was tough, I have been having sleeping problems the past few weeks so that doesn't help. I was really tired going there today, and my arms are KILLING me today! :( seriously no fun at all. My feet are sore as well. I have an appt with the disabled student center to go over accommodations and stuff this friday at 11:30am. (god was i happy to have my disabled parking permit at school, i would have had to park super far otherwise! thinking about walking that far to get to class with sore feet makes me cringe) I have to work tonight 5:30-10pm I was able to get out of class early today so I came home checked the mail to mail in my time sheet for EDD and ate food then fell right asleep. So i'm awake now and I feel like i'm charged enough so actually go to work i was thinking about calling off but i think i'll be okay now. Except for the soreness, i'll just have to put some icy hot on it and hope that helps. I've been taking my meds so i don't know whats going on. Which leads me to my next topic.
I'm highly thinking about switching from Enbrel to Humira. I honestly don't feel like it's working as good as It used to. I filled out the patient support thing for Humira today so hopefully that will go through and my next appt with the Rheumy is at the end of sept (suppposed to be but I can't even make an appt yet still waiting for insurance to approve another one) so by then i'm going to ask for a switch.
Saturday, August 21, 2010
So my feet have been my main problem lately in terms of pain. I hate hate hate it! Especially when I get up after sleeping and they are still sore! I am on the hunt for a good pair of shoes that will help my feet out. So my question to you readers with RA, what brand of shoes do you wear? Or even insoles ? Thanks!
Friday, August 20, 2010
Friday, August 13, 2010
It's offical i'm now a walking drug store! I left out the Enbrel in the photographs, don't forget that!
I went and saw my rheumy today. My white blood count still isn't where it should be but we are going to hold off on seeing a hematologist for now and just monitor me which reminds me I forgot to get a standing order for bloodwork crap... i'll have to call them on monday. So he wants me to throw away diclofenac & darvecet & now has me on two new ones, Meloxicam 15mg (1 a day) & Tramadol 50mg (3x a day as needed) let's hope this brings some relief my feet have been killing me constantly. My pill bag is offically jammed pack now with bottles. He still has me taking pred 1 time a day for now as well. Blahhhhh. It's depressing I know.
On a better note state disability was processed so i'll be starting this soon so that's good news. Oh & for getting two prescriptions I got 2 $10 giftcards from target so I thought that was pretty good. They seem to have them in the weekly ad every other week now :D So thats pretty cool at least I can get SOME money back. Jeez.
Thursday, August 12, 2010
1.) Music, music, music. This has always been at the top of my list, I still to this day don't know what I would do without my Ipod. It's nice to be able to escape for awhile and drown myself in music.
2.) My boyfriend, he is my world <3 I honestly don't know how I ever managed without him in my life and now that I have him, I realize how beautiful life can be and to be cared about by somebody unconditionally just feels amazing. We get along so well, we really are a perfect fit. I've never been treated so well in any of my past relationships. This man is in for the long run and he's always by my side and there for me. I love you baby <3
3.) My Nikon D40. I haven't really been making time for my photography lately I've been consumed with other things but today just reminded me how much I really love to take pictures and capture beautiful things. About a year ago I bought a $500 camera from work cause I got a really good deal on it. & let me tell you it takes the most gorgeous photographs! I went to the Botanical Gardens today and goddess it was so much fun! Here are a few shots that were my favs. I took around 90 photos.
&& this was taken of me by my friend Jamie who went along with me :) & then one of us.
So I had a fantastic time! & we are planning a trip to the Zoo for our next photo adventure before school starts up at the end of this month. :) The only complaint I had was that my right hand/fingers were getting sore from holding the camera which sucked. Other then that it was wonderful to get out into the environment for awhile and escape.
Wednesday, August 11, 2010
I got my "Disabled Person's Parking Placecard" in the mail today! I'm excited for this, as I was reading the paper that came with it on the do's and do not's I found some information that I never even knew about. Such as.... I can park in
blue zones (of course), metered zones without paying!, green zones without restrictions to time limits!!, streets where preferential parking privileges are given to residents and merchants.
So I thought these were some nice perks. At least there are some things that can make RA more manageable but like a friend said, "somehow I don't see this as a fair trade...would rather park FAR AWAY and not have to deal with the pain you do.." which is true, very true.
I'm not really concerned about dirty looks or comment's I might receive, and quiet honestly I do not care what other people think about me, I never have. Karma will come back to them eventually. :)
Saturday, August 7, 2010
I really want to move out of my house, the living situation is horrible. I have way to many family problems and I just don't feel safe being here. I might look to be moving in with a friend for awhile and then moving in with the bf later. I just can't handle it anymore here and under these conditions I know aren't good for my health.
I have work tonight 3pm -10:15pm i'm not really looking forward to it, i kinda just wanna lay around all day but I don't have a choice, & now i finally got my speeding ticket in the mail which is $356, =/ sucks so much. Well I think that covers updates for now!
Sunday, August 1, 2010
My rheumy instructed me to start up pred again 2 pills every morning for five days then 1 pill every day until I see him again on august 13th which also means I need to take the omeprazole again too for now. It's helped a lot but i still feel icky taking steroids and I don't wanna get fat. He mailed me another blood paper so i gotta go 3 days before my appt to get that done again. I hope we can just figure things out so i can get on some sort of schedule and deal with what I have.
ps: im working on social security disability benefits right now, oh my gosh lots of paperwork and i'm also going to be filling for a disabled parking permit.
Monday, July 26, 2010
Went in today to get the blood test done. 6 tubes total. Let's hope i'll learn some new info when i call my rheumy in two days. So after getting that done i took a pred pill today, i'm hoping it'll help a bit since the blood is now done i figured it couldn't hurt to have it now.
Oh i've been reading the book "out of joint" by mary felstiner, i'm hooked I downloaded in on kindle for my phone and macbook, cause the sony ereader store didn't have it :( but either way i highly recommend it!
Saturday, July 24, 2010
I had to leave work early I can barely move my fingers without feeling pain! I took some ibprof and a painkiller. Doubt it will work but we will see... I have some herbal compound here but i need to pick up some juice to mix it in. I am so desperate right now, im just glad my Enbrel is at the boyfriends house instead of mine or else I think I would have used it today.
Friday, July 23, 2010
This pain SUCKS.
I HATE RA!
Wednesday, July 21, 2010
I'm really sore again today and emotionally messed up, Norma Lopez of Moreno Valley, CA who was kidnapped July 15th was my brother's girlfriend, her body was found yesterday afternoon in a field, dead. :'( RIP Norma, <3 Please pray for her family and friends who are going through a hard time, thank you.
Monday, July 19, 2010
On a scale of 1-10, i'm pushing a 6/7 on the pain scale right now. I've been dipping into pain pills and ibprofen. I've offically missed my sunday dose of MTX and my thurs shot of Enbrel. As ordered by my doctor until i can get more blood tests done on the 27th of this month. I'll be missing one more dose of MTX and two more shots until then. Let me tell you I am NOT looking forward to an 8 hour shift tomorrow 9am-5:30p and my boyfriend said if I need to leave early then that's just what I'll have to do. :(
After doing some more googling today concerning my skin reactions I've been getting I came across something called: psoriasis guttate
Here's what i've read so far: (taken from here: http://www.nlm.nih.gov/medlineplus/ency/article/000822.htm)
Guttate psoriasis is a relatively uncommon form of psoriasis. It is usually seen in patients younger than 30. The condition often develops very suddenly, usually after an infection, most notably strep throat. Guttate psoriasis is not contagious.Psoriasis seems to be an inherited disorder. That means it is passed down through families. Doctors think it probably occurs when the body's immune system mistakes healthy cells for dangerous substances. See: Inflammatory Response
Skin cells grow deep in the skin and normally rise to the surface about once a month. In persons with psoriasis, this process is too fast and dead skin cells build up on the skin's surface.
The following may trigger an attack of psoriasis or make the condition more difficult to treat:
- Bacteria or viral infections, including strep throat and upper respiratory infections (I have been getting multiple infections lately)
- Dry air or dry skin
- Injury to the skin, including cuts, burns, and insect bites (this has been happening a lot at work)
- Some medicines, including antimalaria drugs, beta-blockers, and lithium
- Stress (which I have a lot of)
- Too little sunlight
- Too much sunlight (sunburn)
- Too much alcohol
In general, psoriasis may be severe in persons who have a weakened immune system. This may include persons who have:
- Autoimmune disorders (such as rheumatoid arthritis) **DING DING*
- Cancer chemotherapy
Okay so WHY didn't my RHEUMY mention this sort to me?! I guess I just have to figure everything out myself.
I saw the my primary DR on friday she gave me some steriod cream to rub on my spots this seems to be helping, been applying it twice a day.
This type "Guttate -- Small, pink-red spots appear on the skin." is exactly what it looks like on me. So I was 99% sure I had RA when i first saw my primary DR and now i'm 99% sure this is whats going on with my skin. Don't ever doubt a patient it seems I know my body quiet well now!
I will be taking this info with me when I go back to see either of my docs and let them know. Just like RA there is no cure for this skin issue. Why is it happening over the past few months? no clue. But as my rheumy says two autoimmune diseases open the gates for all others.
Wednesday, July 14, 2010
ready for it?
I have been ordered to stop all my medications for minimum of two weeks right now. Why? well the past three blood tests my white blood cell count has been to low, dangerously low =/ this last test the end of june showed it was worse then the first. So the rheumy has to do this as a standard procedure to see if it's the Enbrel or MTX causing it which is extremely rare so he doubts it but the next step if it isn't the meds is to send me to see a hematologists (a blood Doc) to figure out whats going wrong or what else i might have on top of RA and Sjogrens.
I am so scared of what else I might have. & not having MTX or Enbrel for TWO weeks is going to be hell i'm sure. See i was already starting to feel sore even with both those so I had a feeling maybe the Enbrel was starting to stop working anyways :'( So I go in to Re Test in two weeks and he is testing me for Lupus also because I have a feeling I might have it. I've been pretty good so far with my "feelings" The thing is that I have been getting these sores on me and i dont know what they are from but my arm is starting to get more of them, well he is puzzled and doesn't know what they are from i've tried neosporin on them as well as cream, nothing works, they itch too, and even when I was on antibiotics for my ear infections and UTI I has this previous month it didn't clear them so he prescribed me the strongest antibiotic he could that he said he gives to people who can't heal themselves =/ It was 20 bucks for 7 pills I have to take for a week, so im hoping that clears up but according to google they may be a side effect of Lupus. So I guess we will start getting some answers in two weeks. I have so many thoughts running through my head I just want to know whats wrong with me. This explains why I've been getting sick a lot and having infections over the past few months, but I don't want to deal with another disease on top of the two I already have :(
Worst day ever yesterday, and I fear this is only the beginning.
Tuesday, June 22, 2010
I've been angry, depressed, exhausted, sad, hurt, tired, over worked and more lately. I've been doing nothing but arguing with my so called father and dealing with an out of control, attitude, druggie brother here at home. Will it ever end? I wish I could move out right this minute. I had to go buy a new door knob with a lock on it just to keep my 17 year old brother out of my room because he takes my shit. My father hasn't been much of a father and everything about him drives me crazy as if he is trying to make my life even worse. Now I don't want to sit here and write a sob story and feel all sorry for myself but jeez I'm sick of everything!
My pharmacy called this morning. They have been trying to work on getting me a refill authorization for my Enbrel from my DR offices but have been getting shuffled back and forth so I called my Primary DR and insisted the lady check my file because she was saying she had no paper about it. Well I hope she felt like an idiot because she did find it and because of her I may not get my medications on time now. Thank you, DR office lady for not knowing HOW TO DO YOUR DAMN JOB. I'm so sick and tired of this bullshit. & my "Father" decided to rub in my face about how I won't have insurance by Dec, Thank you for the reminder you ass hole.
Saturday, June 12, 2010
Other then that i'm still doing the syringes for my Enbrel and i'm still getting the site reactions :( red, puffy and itchy! *sigh* It's worth it right now though cause I have been feeling pain free lately.
On a brighter note I am going to disneyland & cali adventures with my boyfriend and my cousin and her man on the 21st. So we will get to see the new world of color! i'm so excited! :D
Saturday, May 22, 2010
as of May 4th. =D I take Diclofenac as needed now which I haven't needed except a handful of times so far. So the Enbrel and Methotrexate are holding up well! I just hope this works for me. I've been getting headaches lately too but i've read that this is a side effect of Enbrel. I've been thinking about trying on the Injectable Methotrexate instead of the pill form also so that's something I plan on asking the rheumy about next time I see him which will be in about a month in a half now. I've been keeping up with my blood tests every six weeks, Just got it done on the 17th. When I was at the rheumy's he said my white blood cell count was low and that we'd see how it was doing the next time I see him.
I got an ear infection in both ears this past week, I waited because I thought it would get better but that was a mistake :( my bf's mom checked them out and I did have an infection so friday morning I made an emergency DR appt. Went it and got my prescription for ear drops and antibiotics. So the bf has been giving me my drops 3x a day. I don't know what I'd do without him! he's been so wonderful to me. :)
Other then that everything is going well. Life is good, finally. I feel like everything is on the right track heading in the right direction.
Wednesday, April 28, 2010
It's been awhile since I've made a post! I've been doing really good lately. I saw my rheumy yesterday and i get to cut off the Prednisone !!! I will have half a pill for a week then stop completely cause I had already gone down to 1 pill a day when I started Enbrel. Not just that but he said to use the Diclofenac as needed. :D this also means I can cut out Omeprazole after this week!! I'm so happy!!! He checked out my knees and wrists and said he sees a big improvement I had no inflammation! :D The only downfall is that the past 2 shots of Enbrel I've been getting injection site reactions that are red/swollen almost and last a few days then it turns to a bruise. Anyone else get this and have any tips? The rheumy said to give it a few months and if it gets really uncomfortable we might have to change medications =/
I'm still looking for a job with good benefits, each day that goes by makes me worry more and more. It's hard not to think about. I faxed over my resume for an opening for a clerical/legal asst today that my dad found in the paper. So we will see about that one.
Ok but that is not the only exciting news.. i'm so happy about! I have an new boyfriend who is absolutely AMAZING! I've never met anyone like him everrrrrrr. He makes me soooo happy! One of the best things is that my RA doesn't bother him. So that blog I wrote here: Relationships, yeah I was worrying for nothing. He is really supportive and just, I don't know, just to good to be true
& something a friend told me a few days ago..
".... everything that happens has some kind of explanation of reason we ourselves conclude it to be. And yes it is okay, you know your strength and capability of knowing whats worth it or not. theres nothing that isn't or wouldn't be okay unless you, yourself say and believe that it wont be." she is right. :)
Well time to get ready for work. I'm happy i'm off fri and sat!
Saturday, April 3, 2010
I leave for FL this Friday. I'll be gone the 9th - the 14th. This will be my first time traveling with RA. I have a checklist printed and my suitcase is almost packed. Just have to pack up my carry-on bags which include all my medications. Thankfully I will thank my Enbrel Injection that morning before I fly out of CA so I don't need to worry about dragging that along with me. I work tues/wed/thurs but I get off Thursday afternoon so I have time to finished up whatever I need to before Friday morning. My flight leaves in the afternoon 1 something. I'm just hoping I don't get to stiff while sitting on the plane for so long. I do have 1 layover though so that will give me time to get up and move around. I'm really excited though I can't wait! I will be getting a tattoo while i'm there too! It's going to be a dream catcher on my upper arm. I'm not sure how this will work with having RA. I'm expecting a longer healing time for it though, so I'll have to baby it more then I did my other tattoos that I got before RA.
Medication updates: I'm only taking 5mg (1 pill) of prednisone at night right now instead of 2 a day and this was an adjustment, I did notice the day I went down and the day after I was feeling a little sore, but with my second Enbrel injection this past Thursday I've been feeling better. I've read that Enbrel can start taking effect anywhere from 2 weeks to 3 months. I'm hoping sooner rather then later but we will see :) so far so good!
Thursday, April 1, 2010
Friday, March 26, 2010
So today was an important step forward for me, I had my first Enbrel shot. I had the Enbrel Sureclick auto-injectors delivered to my work today because I was there 8am-4:45pm today so i wouldn't be home to wait around for it to come to my house. This all went smoothly, as there is a pharmacy inside my work. I work at a Super Target. So my pharmacist is a sweetheart and told me there would be no problems having them deliver it there for me and i could pick it up after work! Fantastic he called me in my department to let me know it had arrived which was around 11am. So during my lunch i picked it up and took it home to put away in the fridge. I just couldn't wait to get off work so I could have my first shot!!! So i will be during this every Friday from now on. Which works well because my vacation out of state I leave on a Friday so i won't have to take my Enbrel with me on the plane :)
So finally I got off work, and yesterday I called my Uncle to ask if my Aunt would help me with my first shot because she is a RN. They said yes of course so after work I put my Enbrel in my travel cooler and headed over there. I was superrrr anxious but kinda nervous too. Well we read all the instructions together and then I let her give me the first shot because I wanted to know what kind of pain to expect. Well we let it sit out for a bit so it wouldn't be so cold because I had read that it stings if it's to cold. So after that followed all the steps and this is where I got really scared!! I hateeee needles (yet i have lots of tattoos-- how ironic) just something about drawing blood and putting medicine in me freaks me out. Anyways then we used an alcohol wipe on the area which was my left thigh & before I knew it, it was all over!! I got a cute hello kitty band-aid :) and it didn't even hurt like at all!!! I'm sure I can do this on my own next friday, the pain was almost non-existent.
Now I don't see my rheumy till the end of april BUT I really wanna cut back on the prednisone so i'm going to cut back to 1 pill a day at night starting tomorrow and see how this effects me. I'm totally getting the "moon face" my aunt noticed so i'm not CRAZY! finally someone else besides me can tell! That was a relief haha.
Overall today was a success, I can't wait till next friday!! and I can't wait to start feeling better! :) & my aunt even gave me a microwaveable comfort wrap thats cute w/ lavender & chamomile. :) it feels gooood on my sore joints!
Tuesday, March 23, 2010
On another note, I'm waiting to hear back from the pharmacy that will be delivering my Enbrel. I should have it by this week. I wanted it to come Thursday but I didn't hear back from them today, so that'll probably push it back a day.
I just hope I can find the strength to pull through this.
Thursday, March 18, 2010
I called my PC Doctor office today & was told to call back mon/tues because by then they should have an approval hopefully from insurance for Enbrel. So i'm keeping my fingers crossed that this will finally get moving! I received this Enbrel travel kit in the mail the other day, 2 of them actually. I posted a pic. It was free, it's a mini cooler & came with a booklet that teaches you how to self inject and just information and a sharps container and alcohol wipes, this will come in handy as I plan on going to FL for my spring break next month!! So i'm not sure if i'll have to take my Enbrel injections with me or not depending on if I start by then which i'm hoping too. I just need to get a thermometer to make sure it says cool enough on the plane ride. I'm really excited about my vacation, I haven't been out of California is about 3 years so it will be nice to get away and have some fun. My next appt with my rheumy isn't until the end of April which is more then 6 weeks from the last time I saw him ugh but they are booked. Besides that I've been feeling alright, still get sore & although I do have pain meds i've been trying to not take them if I really really don't need too. Anyways off to bed I think, feeling sleepy and I have work in the morning.
Saturday, March 13, 2010
just figured I'd share a few of my favorite photos I took from my nieces birthday today. She turned 1 :) I love her!!! She had so much fun today and was so cute with her cake and presents!! These were taken with my Nikon D40 except the last one of us was on my camera phone :)
Friday, March 12, 2010
I've been feeling like complete shit lately. Hours are picking up at work again now that the scheduling issue's are fixed. So i'll be working about 30 hours these next two weeks. The good news is they are longer shifts 7-8 hours from now on so I will get more days off instead of working crap 4-5 hour shifts. Let's see how this will make me feel =( But gotta make money to pay those bills. Ugh.
Tomorrow is my nieces 1 year birthday party so i'm looking forward to that & spending some time with my family, let's hope i can have enough energy to get through the day. I'm so tired, I'm going to sleep now, just got home from laser tag with friends which was fun.
Thursday, March 11, 2010
Monday, March 8, 2010
Wednesday, March 3, 2010
He comes and goes
Waiting, waiting to strike each time
Breathing fire that doesn’t burn but freezes
Contained by this creature that controls
I struggle for the strength to overcome
Trapped in pain which leads to fear
Is he gone yet?
My fingers throb, my knees ache, my feet sore
This is where he collided this time
It’s over and I’m left frozen
He left behind signs to remind me he was here
Stiffness, Swelling, Pain, Redness and Warmth
Laying in bed waiting, waiting to move again
Pill after pill, shot after shot
The dragon’s taken off, only to return again
Friday, February 26, 2010
My Rheumy Appt went well. I will be starting Enbrel, but there are some tests I have to take first. So i got more blood drawn yesterday to make sure I don't have Hep, and then Monday I have an appt to test for TB, after that's finished and my primary care docter faxes my rheumy the results I have to call him and let him know it's done so we can put in to get me started on Enbrel. I'm excited. He said he planned on taking me off pred but since I was in a lot of pain he decided to keep me on it a little longer until i can start Enbrel and he also gave me a prescription for a pain killer, the cool thing about them is that they are hot pink!! I posted a picture :) so i just have to take it as needed. I got copies of recent blood work & doctor notes that I am going to start asking for every time, so I'm going to get a file system going on to keep track of everything.
In other new; I got a new phone the day before yesterday! The HTC Droid Eris for verizon, I was ready for an upgrade and decided to stay with verizon. I love it! My first day of creative writing class was monday and that went well! & on tuesday I went to disneyland!!! & the good thing? I wasn't sore that day! I had so much fun!!! Here are a few pictures :) I love that I have a annual pass and can go whenever!
Yes i love love love alice in wonderland!! & was super excited that they finally have merchandise you can buy now since the moving is coming out! :) Anyways it was lots of fun and my feet didn't start hurting until the end, the weather was nice too! Good times :)
Friday, February 19, 2010
Thursday, February 18, 2010
Monday, February 15, 2010
I've always felt like my life was a book. *cue music here* I told myself for many years that I'd love to have someone put my life onto paper. As times passes the urge to have it get done only becomes stronger as I continue to face challenging life events. I'm not the best when it comes to writing but I've thought about doing it myself. I just know I wouldn't be able to sit for hours on end writing nor do I even know the slightest bit about writing a book.
From losing a mother, heartbreak, a car accident, struggling with school, thinking I found love again, & more heartbreak, & becoming diagnosed with a chronic pain disease. It would seem to one that my unfortunate events never seem to fail me... of course with one there always comes another. I've had my fair share of happiness mixed into the despair. I think I've experienced what one would call "hitting rock bottom" but this ceases when a bigger event seems to come my way. Yet here I am, still breathing, still living and trying to conquer everything that gets thrown in my direction, one hit after the next. I like people to believe I'm strong, but sometimes I get tired of pretending to be. What's wrong with letting it all out and crying? I get people asking me "how are you?" a lot lately & quiet honestly I just want to scream I'm horrible, terrible, no... I'm in absolute disbelief on why bad things have to happen to really good people. Is this the depression starting to take over? I don't know whether to feel anger, sadness, disappointment or maybe all three. Can't I just crawl in a hole for awhile & stay there? I'm not asking for forever, I'm just asking for awhile, or at least until I know I can stand up and fight back. Don't get me wrong, I have friends & I have a Dad, & even a fantastic step mom, I have an "almost" significant other If I can call her that who's been here through it all over the past 7 years. Yet here I am, still afraid more then ever of what's to come next.
What is it that's missing?
I went to the cemetery a few days ago & told my mom I have RA. Is that silly? I always wonder what things would be like if she were still here. I miss her. I keep struggling to find the strength inside of myself. I'm not dieing right? At least it's something that won't kill me? Is that it? How is that supposed to make me feel better? It doesn't, I mean It makes me laugh thinking about RA in that way, As if I'd rather suffer from this insane pain I get, these stupid "flares". I didn't ask for this, any of it. I can only pray for a cure one day, or wait patiently for that one medication that will help me get my life back on track. I want my happy ending, I want to reach the light at the end of this long tunnel.
She's losing her mind, she's fallen behind
And she can't find her place, she's losing her faith
She's fallen from grace, she's all over the place, yeah"
Friday, February 12, 2010
My feet have been more sore then usual with working longer shifts over the past few days. I got my taxes back today and invested in something for myself before the rest goes towards bills, the sony digital pocket reader! I love it already :) the design is great & it suits my needs perfectly. I already have 10 books on it. Some I downloaded for free & some I paid for. =] I got a fantastic deal at my work (Target) so I couldn't pass it up. I figure it'll come in handy on those days that I'm feel icky and laying in bed for hours. It's so light weight and much nicer then holding books in my hands. I have The Winter Olympics on tv right now, the opening ceremony so far is so pretty! I've never seen an opening ceremony before. I'm so glad I have tomorrow off and can sleep in as much as I want! I hope I get some Enbrel information in the mail tomorrow. My wrist are starting to get sore so this will be a short entry!
Wednesday, February 10, 2010
I'm counting down the days until I see my Rheumy on the 24th this month. I've been so sore lately & the cold weather off and on hasn't been helping. I've been sleeping in bed a lot this past week I think I got about 11 hours of sleep today and that still doesn't feel like enough! I still feel exhausted but I have to work 5:15p-10p tonight & be up early tomorrow again for work at 8am. I'm not off until saturday. I do have FMLA now for work so if I feel like I really can't I can call out without a problem but I really need the money so that's something I have to try not to do :( But the FMLA allows me to miss up to 7 days a month because that's what I estimated I'd need tops for now for up to 8 hour shifts. This protects me from getting fired for calling off to much or if I need to leave work early.
I've been reading lots of Blogs lately about other people who have RA, so many interesting and helpful entries I've found on RA Warrior (dot) com I even order a book called What to Do When the Doctor Says Its Rheumatoid Arthritis, by Harry D Fischer, MD and Winnie Yu. Found here so I'm looking forward to receiving that in the mail.
Monday, February 8, 2010
What is it?
Sjögren’s (SHOW-grens) syndrome is an autoimmune disease that primarily affects moisture-producing glands. The damage caused to these glands leaves you with dry eyes and mouth. Other parts of the body (such as the skin, respiratory system, nerves, thyroid glands and digestive tract) can be affected by the inflammation as well.
In this disease, the body’s immune system mistakenly sends its disease-fighting cells to attack the lacrimal and salivary glands, which produce tears and saliva, respectively. Rather than protecting the body as it is intended to do, the immune system damages these glands causing dry eyes (called keratoconjunctivitis sicca) and dry mouth (xerostomia).
Sjögren’s syndrome can occur in two forms:
- Primary occurs alone and is not associated with any other disease.
- Secondary occurs with rheumatic diseases such as polymyositis, rheumatoid arthritis, scleroderma and systemic lupus erythematosus.
Scientists think that Sjögren’s syndrome is caused by a combination of genetic and environmental factors. Several different genes seem to be involved, but simply having one of these genes will not cause you to develop the disease. Some environmental trigger must activate the immune system. Researchers think that the trigger may be a viral or bacterial infection. Because most people with Sjögren’s syndrome are women, it is thought that hormonal factors play some role in the disease’s initiation.
What are the effects?
Along with the main symptoms of dry eye and dry mouth, several other parts of the body can be affected by Sjögren’s syndrome.
- Eyes: Your eyes may burn and feel dry, gritty and itchy. They may appear red and can be sensitive to bright lights. Having dry eyes makes you more prone to getting eye infections.
- Mouth: Your mouth will feel dry, and you may have difficulty swallowing and speaking. Your sense of taste and smell may be altered. Because you are lacking natural saliva, which contains substances that fight bacteria and cleanse the mouth, you are susceptible to cavities and mouth infections. The fungal infection candidiasis (oral thrush) is particularly common among people with Sjögren’s syndrome and causes redness, burning and a white film in the mouth.
- Energy: Sjögren’s syndrome can cause extreme fatigue that can interfere with your daily life.
- Salivary glands: The saliva-producing glands located under your tongue, in front of your ears and near the jawline may become swollen and sometimes tender.
- Nose and throat: A dry nose and throat can cause a tickly feeling and persistent cough, leading to irritation and hoarseness.
- Skin: About half of people with Sjögren’s have dry skin. The skin may only itch, or it may also become so dry that it cracks and splits. Skin that is split or has been vigorously scratched is prone to infection. Some people with Sjögren’s (particularly when it is secondary to lupus) are sensitive to sunlight and can get sunburn from minor exposure.
- Vagina: Vaginal dryness is common in women with Sjögren’s syndrome. Painful intercourse is the most common complaint.
- Lungs: Pneumonia can be a complication of dry mouth when food becomes aspirated when swallowing is difficult or bacteria from the dry mouth can migrate to the lungs. The disease itself can cause inflammation of the bronchial tubes, windpipe and voice box.
- Kidneys: Some people with Sjögren’s syndrome have a diminished ability to concentrate urine. People may have distal renal tubular acidosis, which gives people acidic urine and can lead to calcium loss from bones. Parts of the kidney’s filtering system can be affected by this autoimmune disease, causing inflammation around the kidney’s filters (interstitial nephritis) or in the filters themselves (glomerulonephritis).
- Nerves: Peripheral nervous system involvement can cause carpal tunnel syndrome, peripheral neuropathy or cranial neuropathy. Carpal tunnel syndrome causes pain, numbness and tingling in the thumb and index and middle fingers. Peripheral neuropathy causes similar symptoms in the legs or arms. Cranial neuropathy causes face pain; loss of feeling in the face, tongue, eyes, ears or throat; and loss of taste and smell. Rarely, Sjögren’s syndrome can affect the brain and cause stroke-like symptoms.
- Digestive system: Inflammation in the esophagus, stomach, pancreas, and liver can cause painful swallowing, heartburn, abdominal pain and swelling, loss of appetite, diarrhea and weight loss. It can also cause hepatitis (inflammation of the liver) or cirrhosis (hardening of the liver).
- Connective tissues: The connective tissues of the body include the joints, muscles, bones, skin, blood vessel walls and lining of internal organs. Sjögren’s syndrome could affect any one of these on its own. In addition, several autoimmune disorders that effect the connective tissues are associated with Sjögren’s syndrome, including:
- Raynaud’s phenomenon
- Rheumatoid arthritis
- Systemic lupus erythematosus
- Thyroid disorders: Grave’s disease (overactive thyroid) or Hashimoto’s thyroiditis (underactive thyroid)
- Lymph nodes: About five percent of people with Sjögren’s develop lymphoma (cancer of the lymph nodes). Lymphoma occurring in patients with Sjögren’s syndrome often involves the salivary glands.
The main goals of treatment for Sjögren’s syndrome are to alleviate the symptoms of dry eyes and dry mouth. If other parts of your body are affected, your doctor will add other therapies as needed. One general tip for anyone with Sjögren’s syndrome is to check with your doctor to be sure that none of the medications you take for any other problems could be contributing to your dryness. You may not be able to stop taking the medication, but perhaps some other formulation will be available.
Dry eye treatments
- Artificial tears: These are available in different thicknesses, some with preservatives and some without. Preservatives may irritate the eyes.
- Eye ointments: These are thicker and longer lasting than artificial tears. Most people use them only at night as they may blur your vision.
- Hydroxypropyl methylcellulose (Lacriserts): You place these small pellets in your lower eyelid; when artificial tears are added, a film covers the eye that traps in moisture.
- Cyclosporine emulsion drops (Restasis): These drops deliver the immunosuppressant cyclosporine directly to the eye. It is thought that using this drug causes the immune reaction in the tear gland to be suppressed, resulting in increased tear production.
- Punctal plugs: Either collagen or silicone plugs are inserted into the tear ducts to prevent what tears you have from being drained away.
- Punctal occlusion: If punctal plugs work for you, the tear ducts can be surgically closed permanently.
Dry mouth treatments
- Sugar-free gum and candy: If your salivary glands are still making some saliva, you can stimulate production by chewing gum or sucking on hard candies. Be sure they are sugar-free so that you don’t contribute to cavities.
- Sips of water: Take small sips of water or other sugar-free drink throughout the day.
- Lip balm: Oil- or petroleum-based balm or lipstick can soothe dry, chapped lips.
- Saliva substitutes: Gel-based substitutes give the longest relief. Some contain fluoride, which will help prevent cavities.
- Salivary gland stimulants: Pilocarpine (Salagen) and cevimeline (Evoxac) are two medications that can stimulate the glands to produce saliva.
- Antifungals: Candidiasis (oral thrush) is a common infection in people with Sjögren’s. Antifungal medications, such as nystatin or clotrimazole, are available to treat the infection.
- Moisturizing creams: Heavy moisturizing creams and ointments should be applied three or four times per day to trap moisture in the skin.
- Sunscreen: If you are sensitive to sunlight, wear a minimum of SPF 15 sunscreen every day.
- Moisturizer: Vaginal moisturizers attract liquid to dry tissues and can be used every day.
- Lubricant: Vaginal lubricants are used only to make intercourse more comfortable, they do not moisturize.
- Skin creams: Regular skin creams and ointments can be used on the vulva (outer surfaces of the genital region).
- Estrogen: Vaginal estrogen creams may be beneficial for postmenopausal women.
- Antibiotics: Pneumonia is treated with antibiotics; your doctor will choose the appropriate one.
- Humidifier: Placing a humidifier in the rooms you use the most can alleviate bronchial irritation and inflammation.
- Corticosteroids: Steroid medications (such as prednisone) may be needed to relieve inflammation within the lungs.
Most kidney problems will not need treatment unless kidney function is affected.
- Alakaline preparations: Renal tubular acidosis is treated with oral alkaline medications that contain sodium and potassium to correct the body’s acid-base balance.
- Corticosteroids: Steroid medications (such as prednisone) may be needed to treat inflammation within the kidneys.
- Immunosuppressants: Immunosuppressants (such as hydroxychloroquine [Plaquenil], methotrexate [Rheumatrex], and cyclophosphamide [Cytoxan]) may be needed to inhibit the immune reaction occurring within the kidneys.
Nervous system treatments
- Pain medication: Pain relievers, such as acetaminophen (Tylenol, etc.) and nonsteroidal anti-inflammatory drugs (aspirin, ibuprofen, etc.) can be used to control the pain caused by carpal tunnel syndrome, peripheral neuropathy or cranial neuropathy.
- Corticosteroids: Steroid medications (such as prednisone) may be needed to treat the inflamed tissues.
- Immunosuppressants: Immunosuppressants (such as hydroxychloroquine [Plaquenil], methotrexate [Rheumatrex] and cyclophosphamide [Cytoxan]) may be needed to inhibit the immune reaction occurring within the body.
Digestive system treatments
Treatment varies depending on the digestive problems you have, but may include the same as those used to treat the nervous system.
Connective tissue treatments
The connective tissue diseases [link] associated with Sjögren’s syndrome are treated as they would be if they were occurring by themselves.
What is it?
Rheumatoid arthritis (rue-ma-TOYD arth-write-tis) is a chronic disease, mainly characterized by inflammation of the lining, or synovium, of the joints. It can lead to long-term joint damage, resulting in chronic pain, loss of function and disability.
Rheumatoid arthritis (RA) progresses in three stages. The first stage is the swelling of the synovial lining, causing pain, warmth, stiffness, redness and swelling around the joint. Second is the rapid division and growth of cells, or pannus, which causes the synovium to thicken. In the third stage, the inflamed cells release enzymes that may digest bone and cartilage, often causing the involved joint to lose its shape and alignment, more pain, and loss of movement.
Because it is a chronic disease, RA continues indefinitely and may not go away. Frequent flares in disease activity can occur. RA is a systemic disease, which means it can affect other organs in the body. Early diagnosis and treatment of RA is critical if you want to continue living a productive lifestyle. Studies have shown that early aggressive treatment of RA can limit joint damage, which in turn limits loss of movement, decreased ability to work, higher medical costs and potential surgery.
RA affects 1.3 million Americans. Currently, the cause of RA is unknown, although there are several theories. And while there is no cure, it is easier than ever to control RA through the use of new drugs, exercise, joint protection techniques and self-management techniques. While there is no good time to have rheumatoid arthritis, advancements in research and drug development mean that more people with RA are living happier, healthier and more fulfilling lives.
What causes it?
The exact cause of RA currently is unknown. In fact, there probably isn’t an exact cause for RA. Researchers now are debating whether RA is one disease or several different diseases with common features.
We do know that the body’s immune system plays an important role in rheumatoid arthritis. In fact, RA is referred to as an autoimmune disease because people with RA have an abnormal immune system response.
In a healthy immune system, white blood cells produce antibodies that protect the body against foreign substances. People who have RA have an immune system that mistakes the body’s healthy tissue for a foreign invader and attacks it.
One example of this miscommunication in the body is known as rheumatoid factor. Rheumatoid factor is an antibody that is directed to regulate normal antibodies made by the body. It works well in people with small quantities of rheumatoid factor. People with high levels of rheumatoid factor, however, may have a malfunctioning immune system. This is why your doctor often will request a test measuring rheumatoid factor when trying to diagnose RA. In general, the higher the level of rheumatoid factor present in the body, the more severe the disease activity is.
It is important to note that not all people with RA have an elevated rheumatoid factor and not all people with an elevated rheumatoid factor have RA. The test also can come out negative if it is done too early in the course of the disease. Approximately 20 percent of people with RA will have a negative rheumatoid factor test and some people who don’t have RA will test positive.
Learn more about the immune system.
Women get rheumatoid arthritis two to three times more often then men and their RA typically goes into remission when they get pregnant. Women develop RA more often than expected in the year after pregnancy and symptoms can increase after a baby is born. These facts lead researchers to believe that gender might play a role in the development and progression of RA. Many are trying to understand the effects female hormones might have in the development of RA. Currently, there are limited answers to these questions. For more information on pregnancy and arthritis, see Pregnancy Prognoisis.
Most researchers believe there are genes involved in the cause of RA. The specific genetic marker associated with RA, HLA-DR4, is found in more than two-thirds of Caucasians with RA while it is only found in 20 percent of the general population. While people with this marker have an increased risk of developing RA, it is not a diagnostic tool. Many people who have the marker either don’t have or will never get RA. While this marker can be passed from parent to child, it is not definite that if you have RA, your child will too. Learn more about genetics and RA.
Some physicians and scientists believe that RA is triggered by a kind of infection. There is currently no proof of this. Rheumatoid arthritis is not contagious, although it is possible that a germ to which almost everyone is exposed may cause an abnormal reaction from the immune system in people who already carry a susceptibility for RA.
What are the effects?
Rheumatoid arthritis can start in any joint, but it most commonly begins in the smaller joints of the fingers, hands and wrists. Joint involvement is usually symmetrical, meaning that if a joint hurts on the left hand, the same joint will hurt on the right hand. In general, more joint erosion indicates more severe disease activity.
Other common physical symptoms include:
- Stiffness, particularly in the morning and when sitting for long periods of time. Typically, the longer the morning stiffness lasts, the more active your disease is.
- Flu-like symptoms, including a low-grade fever
- Pain associated with prolonged sitting
- The occurrence of flares of disease activity followed by remission or disease inactivity
- Rheumatoid nodules, or lumps of tissue under the skin, appear in about one-fifth of people with RA. Typically found on the elbows, they can indicate more severe disease activity.
- Muscle pain
- Loss of appetite, depression, weight loss, anemia, cold and/or sweaty hands and feet
- Involvement of the glands around the eyes and mouth, causing decreased production of tears and saliva (Sjögren’s syndrome)
Advanced changes to look out for include damage to cartilage, tendons, ligaments and bone, which causes deformity and instability in the joints. The damage can lead to limited range of motion, resulting in daily tasks (grasping a fork, combing hair, buttoning a shirt) becoming more difficult. You also may see skin ulcers and a general decline in health. People with severe RA are more susceptible to infection.
The effects of rheumatoid arthritis can vary from person to person. In fact, there is some growing belief that RA isn’t one disease, but it may be several different diseases that share commonalities.
The proper medication regimen is important in controlling your RA. You must help your doctor determine the best combination for you. The main categories of drugs used to treat RA are:
- Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) – These drugs are used to reduce inflammation and relieve pain. These are medications such as aspirin, ibuprofen, indomethacin and COX-2 inhibitors such as valdecoxib and celecoxib.
- Analgesic Drugs – These drugs relieve pain, but don’t necessarily have an effect on inflammation. Examples of these medications are acetaminophen, propoxyphene, mepeidine and morphine.
- Glucocorticoids or Prednisone – These are prescribed in low maintenance doses to slow joint damage caused by inflammation.
- Disease Modifying Antirheumatic Drugs (DMARDs) – These are used with NSAIDs and/or prednisone to slow joint destruction caused by RA over time. Examples of these drugs are methotrexate, injectable gold, penicillamine, azathioprine, chloroquine, hydroxychloroquine, sulfasalazine and oral gold.
- Biologic Response Modifiers – These drugs directly modify the immune system by inhibiting proteins called cytokines, which contribute to inflammation. Examples of these are abatacept, etanercept, infliximab, adaliumumab and anakinra.
- Protein-A Immuoadsorption Therapy – This is not a drug, but a therapy that filters your blood to remove antibodies and immune complexes that promote inflammation.
& a video that explains what RA does: