Real quick these are some of my previous journal enteries that I published on a support website called mdjunction.com I thought they painted a better picture of the progression of my RA.
|May 13 2011|
WARNING RANT AHEAD: I swear I am so sick of well meaning people coming up to me and asking me, “are you feeling better?” the way they say it makes it sound like I have a cold! Why can’t people understand that there isn’t a “better” granted there are some good days, but most are bad, coping with this disease is soul crushing at times but I try my hardest to appear normal. It’s just incredibly irritating. I’m almost to the point where I just want to tilt my head, smile, and say ‘fine’. X[
On the flip side when the people that know me and see my everyday notice how hard I try and fight it is the ultimate compliment. Yesterday my JROTC LTC pulled me aside and told me that he was so incredibly proud of me for handling the onset of my RA and getting proactive about it. He also told me he appreciated that I was one of if not the hardest working cadet in the battalion. But what really got me was when he said that he had seen how much pain I was in even when I tried to hide it, and how he was amazed by my will to fight it and continue to do my job (I’m the chief logistics officer for 230+ cadets). I feel like a lot more people need to be like my colonel (it kind of made my year actually).
|May 09 2011|
A friend of mine who specializes in herbal treatment and has been in her profession for 20+ years recently suggested I try a herb called”kava”. While there is a myth that it causes severe liver damage, it holds no merit. (The rumor was started after a group of people became ill after ingesting a pill form of the kava plant that included the POISONOUS tops of the kava plant that a FORMER farmer had included in his shipment as a way to cut costs not realizing it was toxic.) In other words, kava is completely safe and less addictive that your average pain killers.
Anyways, so Kava has been used as an anesthetic and anti-depressant for many years and I must say it works incredibly well. I felt virtually pain free and my anxiety was more than just under control. Granted when it wore of i felt as though I had been hit with a ton of bricks and then beaten with said bricks but I feel it was worth it. I was able to finish a stained glass project and a good number of things for my classes, and I felt positive about life for the first time in a while. I’m by no means saying that this is a cure-all but I think that there is great potential in kava and that some may find it a tremendous asset. SIDE NOTE: if taken before bed kava has the effect of helping insomniacs fall into a fairly restful sleep. http://www.kava.com/
IN OTHER NEWS:
I am picking up my CPAP machine later today (it was RX’d to treat my acute apnea [apparently i just stop breathing, no snoring] by a dr. recently) I’m going to start wearing it tomorrow night, so we’ll see how that goes.
|May 03 2011|
I’ve had pain in my cervical vertebrae for a few months and have found research online suggesting that it may be RA related. I’m going to ask my rheumy for a neck X-ray or MRI whichever shethinks is best. I just feel like it’s better to keep tabs on all inflamed joints.
So I go to my first 3 clinical study appointments the 20th, 23rd, and 27th. They will be testing to see how my MTX affects me over the next 3 years.
|Apr 19 2011|
I had an AMAZING time at prom. I was able to dance with Drew a decent amount and then got to eat at the cheesecake factory. We went to ‘prom after hours’ which is hosted by our school. I startedwinding down at about 2 a.m. while everyone else was still wired. Went home with drew at 4 and fell asleep instantly on his sofa, poor guy. He tried to wake me up to get me home but apparently I wouldn’t get up XD. I finally got home and slept for 5 more hours. While prom was exhausting it was so worth it and I felt like a princess!
I’m looking into maybe participating in a clinical trial involving MTX with an additional medication (the one being tested) in order to reduce joint inflammation and slow progression of RA. I don’t know if I’m going to go on to attempt to get in or not. Anyone been in a clinical trial before? Thoughts?
|Apr 09 2011|
|Mar 28 2011|
This past weekend I drove from Dallas to Austin for a family function and the next morning drove to Stillwater OK, only to return to Dallas the next day. So in all 16 hours of driving… I managed to give myself my MTX in the hotel I was staying at and then drive 4 hours back to Dallas the next day! I am so proud of myself 🙂 The MTX finally seems to be helping, the rheumy said that my joints look as though they are improving and has decided to raise my MTX dosage slightly (I start the in creased dose this Friday). I am off the Rybix ODT (my pain medication) and am only taking Celebrax as needed! It looks like I’ll be able to go off to college in the fall after all! I’m so glad I finally have good news 🙂
Also the last time I was in Austin (before this last trip) I found a lotion called “Two Old Goats” which claims it helps relieve the symptoms of arthritis and fibromyalgia through the mixture of essential oils in it. I bought a ton of it when I was there! the bottle says that there is a cumulative effect if you use it 2 times a day (which I have yet to experience). It doesn’t make my pain disappear but it definantly took a good chunk of the edge off. I’m not promoting this as a cure-all but just want to share the fact that this thing exists. It’s a small business that runs out of Houston Texas. In the future I will order it online from http://www.twooldgoats.com , again just saying that it helped me a bit 🙂
|Mar 09 2011|
I try really hard to make up the huge amount of make-up work that is thrown my way because of my health. I have can have up to 4 make uptests in one day! I’ve never been very good at math and usually barely pass. So making up math tests back to back is fairly difficult. It really doesn’t help when the teacher confronts me about making an 8 (yes out of 100) in class and makes me feel stupid and like I didn’t even try(on my 18th B-day). I tried to explain to her that I was confusing the different units and she essentially said I was making excuses. I was really optimistic that I was almost made up on everything too… I just can’t keep the different math units separate in my head. She said I have till Friday to re-test but I don’t know if i’ll do much better (I do plan to study my butt off though). I really need this class to graduate.
She emailed my mother expressing how she felt that if I tied harder I would be a lot more successful. I study 1-2 hours a night, have a private tutor, and Drew helps me. I’ve just always struggled with math and when I told her that she said, “I don’t believe that. I believe every one can improve at math if they believe they can.” Yes because sever learning disability has nothing to do with it…. I just don’t understand why I can’t be given just a little understanding….
I’m so stressed from all of this that I keep having panic attacks both while awake and asleep. Drew had to wake me up the other night because I was hyperventilating and he didn’t know what to do.
So my parents have been suggesting that I further alter my diet. Apparently there is a guy named Mcdougall who runs a ‘health camp’ for a week or so where they teach you how to eat appropriately. Only thing is it costs $5,000. Any thoughts?
|Feb 28 2011|
|Feb 11 2011|
I know it sounds childish but I really want to just close my eyes and wish this away. It doesn’t help that every five minutes my mom runs up to me with a new all natural solution. I understood the diet and exercise changes, but she has a new thing to ‘help’ every day! It’s just to much, i know she was trying to help but it’s just overwhelming. I told her and she backed off. It just feels like everyone wants to ‘fix’ me a different way. It’s like they don’t understand that I’M the one dealing with this, it’s MY body. I’m just feeling more frustrated as the days go by. I feel like I live in ‘RA land’, almost everything in my life revolves around RA now, or at least that’s how it feels.
Okay so we’ve all seen the commercials for the ‘RA fit kit’ with the, “my RA is different from your’e RA” girl. Well out of curiosity I requested the fit kit and it arrived today. It looks legitimately useful the exercises seem fairly doable and best of all it was free 🙂 More on this later but it’s worth a shot. http://www.myrafitkit.com
|Feb 10 2011|
|Feb 08 2011|
At least it would be warm there. Mini- blizzard number two seems to be headed my way; what ever happened to spring? The cold is killing me, I’m trying so hard to make school all day every day soI can pass my classes and graduate high school. I’m getting really tired of people accusing me of faking this for attention. Seriously. One of my friends even came up to me and asked I was really sure I was sick and not just blowing this out of proportion… It’s making me nuts. I wouldn’t even tell people about the RA if they didn’t pry about why I miss so much school or why i get to use a laptop and ipad in class ( my hands still aren’t good enough to really hold a pencil for more than a minute or two). Good news is that I was finally officially classified as a 504 (disabled) student [i knew it was happening but the paperwork just came through].
I’m still going to water classes at Aquafit, I’ve lost 5 lbs. It’s not much but after the 25 i gained with the knee surgery I’ll take what I can get. I’m just so tired so much of the time, the MTX keeps me from sleeping. I was going to take to the rheumy about it but she cancelled because of the last mini blizzard. I couldn’t get anything done on the rybix so I stopped taking that too…. I think I’m beginning to sound whiny, I try not to complain to much… this just really sucks to have come on in your senior year…. oh well.
|Feb 03 2011|
GOOD NEWS TIME!!!! I got in to the Oklahoma State University and the studio art departments space there is AMAZING! on my tour there i could have just died of happiness. the housing department is also not giving me a hard time and is actually working with me on my ADA accomidations for the dorms so i have one of the few first floor rooms (very important). Planning to attend in the fall 🙂
as anyone who lives in the midwest or southwest knows we have been hit my an ice storm. i have also learned something. my car functions as both a vehicle and an ice skate; as do my shoes. (Additional information: i live on a hill) this last week has been entertaining at least….
I go back to the rheumy for a check up in 8 hours. I gave myself my first home shot last saturday… I did everything i thought i was supposed to do. I held the needle at an angle and had a nice roll of tummy fat yet somehow it hurt more than last time and was a bleeder. I REALLY hope it’s one of those things that you get better at with practice…. stopped my celebrax because my body thinks it’s what made it sick last week (i started it the same day as MTX for some reason)
|Jan 26 2011|
|Jan 21 2011|
so i stopped taking all my pain drugs and NSAIDs because they had me in such a fog that i was losing hours out of the day and constantly confused (i’d be in one class and look up and be in anotherand not remember moving)
Never made it to school, the shock of being unmedicated made my body shut down on some level and i couldn’t get out of bed till noonish… Took first MTX shot today…. also took celebrax for the first time. shot made me feel pretty darn sick…. still feeling that way. talked about pain meds with RN whos talking to the doc about my allergy to codeine and asking what i can be put on. hopefully i’ll have an answer by monday. must sleep….
|Jan 19 2011|
So this morning I woke up and decided it was all about mind over matter. At about 11:00 I decided to finish my fused glass project thatI started before my symptoms ran amuck. After 10 or so minutes of using the glass grinder I put down the glass and looked at my right hand only to realize the thumb joint was HUGE, swollen, purple, and completely immobile. This being my first complete lock up/ muscle spasm of my arm I went to the nurse. God Bless my school nurse, this woman has been nothing but helpful. She had heard that some of my teachers where giving me a hard time and put together booklets on RA for each of my teachers and made sure they got and read them! Now that’s going above and beyond! Anyway so I go to her office and she looks at it and tells my to call my mom and my rheumy because she thought it was RA related (as did I). I called my mom but had lost the office number so I just left my mom a REALLY detailed message. I figured going home was not going to help anything so I went to class… My friends dubbed it “mannequin arm” since my arm was locked from fingers to elbow. Fun stuff… My ROTC colonel asked what was up with my arm and all i said was, “oh don’t worry it’s fine….” he looked at me like i was a mutant…. super. My arm was stuck like that until 4:00 when my physical therapist magically massaged, warmed, and stretched it out. On a side note I graduated from 8 months of physical therapy today 🙂
So I finally get a text from my mom who had a phone conference with the rheumy over the fact that the Prednisone and Etodolac weren’t helping. Guess who gets to learn how to give herself injections? This guy (I am scared of needles… well shots actually, blood draws are fine i’m used to those). I start Methyltraxate (sp?) friday along with a TON of folic acid. let’s have an overview of tried and failed meds thus far:
1000 MG Naproxen: lost effectiveness
5 mg (multiple tablets) Prednisone: made sick
Etodolac: migraines, insomnia, stomach upset, only helps a little
Let’s hope that this goes better. Has anyone tried Methyltraxate before? How did you do on it? And for the love of god how can u give yourself a shot once a week?! I’m feeling very “not brave” at the moment….. anyways… yeah, fun day.
|Jan 18 2011|
I’m not going to sugar coat it like i normally do by saying, “It’s fine”, “It’s no big deal”, “it could be worse”…. This freaking sucks. It really does, I try to have a good attitude about it but I’m just so tired of it all. The Prednisone makes me sick most days and when it doesn’t the Etodolac does. I’m in the second semester of my senior year and I’m having a really hard time keeping up with school because I miss so much. I’m waiting on more blood work to see what kind of RA meds I’m being moved to (I just feel like it’s taking to long…). My hands, feet, shoulders, ankles, and wrists like to just stop working as of late.
My boyfriend has been amazing through all of this though. He helps me get my meds on time and the right food (trying to cut out corn, soda, and *SOME* gluten). He rubs my joints down and stays up with me when the pain is to bad to sleep. Drew has been god sent these last few months.