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Title: Need a few good vibes today... Post by Lizzie2 on Jun 18th, 2006, 11:09am I haven't mentioned this on here at all, but today is my first dose of methotrexate, which is actually a chemo drug, but it is used to treat rheumatoid arthritis at much lower doses than used to treat cancer. While we are still not entirely sure if my diagnosis fits that of Rheumatoid Arthritis or Lupus or both, my rheumatologist feels that it is important for me to take a relatively high dose of a low dose (does that make sense?) of the med in order to hit my immune system with a big punch to prevent my life from being much worse later on. However, by hitting things with a big punch, it means a bit more misery on my part for right now. The one encouraging thing is that Tina (Woobie) has assured me that the methotrexate has not given her any bad side effects, which I'm very glad to hear!! Everybody else I've talked to that has taken it has had a good amount of fatigue, nausea, vomiting, and more instances of getting sick with colds, etc. The biggest and baddest side effects are severe anemias, potential for liver damage, risk of malignant lymphoma that generally resolves when stopping the med, nausea, fatigue, mouth sores, and risk of infection from either your own natural flora or from others. I will be having blood work after the 3rd dose to make sure things are going okay, and I started a B complex vitamin with Folic Acid yesterday to try to help with energy and to try to avoid mouth sores - which I'm told this drug can cause... I am definitely a little nervous about the fact that I work in a hospital, and even though I work with babies, you'd be surprised by what things they can get sick with - I'll be especially nervous if I have to work in isolation and I suppose that by taking the correct precautions, I should be safe enough, but still a little worried about it! I have to take it once a week for at least 2 months, but I will see my doctor in 1 month to see how things are going. I was a little leery of taking this without knowing for certain that I have rheumatoid arthritis, so I called my internal medicine doctor - whom I trust more than almost any other doctor I see. She told me that my rheumatologist tends to be very conservative and would never start a treatment for somebody that she didn't feel was absolutely necessary. I've taken a week to make the decision to take the med, and I knew I had to start it on a day off anyways because I will take 5 pills throughout the day to TRY and minimize nausea/vomiting/fatigue, but we'll see...! I felt a little sad this morning because I woke up to a beautiful day outside. I'm at my parents' house because today is my dad's birthday and father's day, but my parents went to the Jersey Shore this morning for the day, and I knew I couldn't do that with working tomorrow and have some things to try and take care of at home. However, this whole treatment has been pretty controversial in my family, and my mom is very against my taking it. So I didn't tell them that I'm taking it today... They don't need the stress, and I don't want the worry either... However, I guess I'm a little nervous about taking it at home alone - wouldn't have been as nervous if my best friend hadn't said to me, "You shouldn't be alone when taking chemotherapy, even if it is a low dose for something other than cancer." LOL I guess she's right... So, I may post throughout the day so that SOMEbody knows I'm alive and well besides my cat...haha... ;) I still have to drive back to my apartment maybe in an hour or so - I'm putting off the inevitable! :) I know that it could be much worse - I could be taking this for cancer, and I'm very thankful that I'm not. That being said, I'm not overly thrilled that I have to take it at all. I may try to get outside and take a few walks or something - anything to prevent lying down and then sleeping the entire day away and concentrating on feeling bad! Sorry to whine here, guys... If you have a few positive vibes to spare, I could really use them. Thanks! Love, Carrie :) |
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Title: Re: Need a few good vibes today... Post by totka2 on Jun 18th, 2006, 11:19am A few? I have tons of vibes for you. And don't worry :-* |
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Title: Re: Need a few good vibes today... Post by Sean_C on Jun 18th, 2006, 11:29am Hope this helps (mms://66.186.0.101/allaccess/rodnifyo.wma) ;;D Sean................................ |
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Title: Re: Need a few good vibes today... Post by Jasmyn on Jun 18th, 2006, 11:30am ((((((((Vibes coming your way)))))))) |
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Title: Re: Need a few good vibes today... Post by Charlie on Jun 18th, 2006, 3:00pm http://www.netsync.net/users/charlies/gifs/VIBES & MORE.png We're widja, kid Charlie |
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Title: Re: Need a few good vibes today... Post by Richr8 on Jun 18th, 2006, 3:05pm [[[[[[[[[[[[[L2]]]]]]]]]]]} Her yoa go. Keep your chin up. We're pullin' for you. |
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Title: Re: Need a few good vibes today... Post by Lizzie2 on Jun 18th, 2006, 7:08pm Thanks guys! I just took pill #3 and so far it's going okay. I have 2 left to take over the next several hours - been trying to really spread them out, even though I got started much later in the day than I had originally planned! I guess the true test will be how I feel tomorrow, since I work a 12 hour day shift. Been trying to keep active so that if it's going to make me really tired, I won't notice as much...so far I've cleaned my kitchen, living/dining rooms, bathroom....actually dragged out the Dyson for like the 2nd time ever and washed the floors! After dinner, I will start to tackle my room, but I don't know how far I'll get on that...that's my personal disaster area... LOL But at least it's been keeping my mind off it - this is my spring cleaning since I didn't feel up to it in the spring! Plus, I need to get rid of the dust and grime especially with the med and all.... Sean - thanks for the song - I like that one! :) It made me smile, that's for sure. :) I know all this isn't CH related, but I appreciate the support. I have only had 1 hit so far today, so that's a nice break for a change! Even my constant migraine was barely there for most of the day until the last couple of hours. Yippeeeeee....my body was letting me rest one area to get ready to fight another I guess! ;) Hugz, Carrie/Lizzie2 :) |
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Title: Re: Need a few good vibes today... Post by tanner on Jun 18th, 2006, 11:03pm OMG, Carrie I am so sorry that I was away all day and just now saw this post, but big VIBES starting right now and we will keep them coming your way as long as needed. Please keep us posted! I have some friends on Care2.com that have the same or similar conditions and treatments that I would be happy to connect you with. Prayers and Vibes from Tim & Linda Rambow |
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Title: Re: Need a few good vibes today... Post by Lizzie2 on Jun 18th, 2006, 11:10pm Thanks very much Tim! We'll just see how I feel tomorrow...right now I have this aching headache that is a little different from my usual, so I'm wondering if I got the headache from the med. Hard to say since I have a headache all the time, though. :-/ However, the good news is that I got through all 5 pills, and now I'm going to bed - I didn't get sick, but I am really tired...no more tired than my usual though I guess! I don't know how long this takes to really "hit" you. We'll see how the 12 goes tomorrow. I'm trying to think positively about it and deny feeling side effects so that it takes me longer to notice any...LOL That probably sounds crazy, but I really want to believe that I don't have side effects so that at the very least, I won't go running off thinking I have every side effect on the list! ;) I'm so slow in the morning as it is from pain and fatigue - I'm hoping that tomorrow morning I don't feel any worse than usual, let's put it that way. I did take more zofran tonight to try to keep away nausea. Thanks again for the message! I'd love to hear more about the Care2.com website. Take care! Carrie :) |
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Title: Re: Need a few good vibes today... Post by maffumatt on Jun 19th, 2006, 9:19am Hang in there, we are all behind you. |
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Title: Re: Need a few good vibes today... Post by Langa on Jun 19th, 2006, 9:39am [smiley=hug.gif] Hang in there Lizzie... Langa |
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Title: Re: Need a few good vibes today... Post by sandie99 on Jun 19th, 2006, 12:11pm Carrie, lots of vibes from Finland! I hope it's going well in the future. :) Best wishes, Sanna |
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Title: Re: Need a few good vibes today... Post by E-Double on Jun 19th, 2006, 2:35pm Many hugs and thank you for everything |
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Title: Re: Need a few good vibes today... Post by Carl_D on Jun 19th, 2006, 3:06pm Mega vibes and bear hugs going out to you! [smiley=hug.gif] Carl |
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Title: Re: Need a few good vibes today... Post by LeLimey on Jun 19th, 2006, 4:05pm Lizzie you are one brave girl :) lots of love Helen |
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Title: Re: Need a few good vibes today... Post by Lizzie2 on Jun 19th, 2006, 10:45pm Thanks guys... Today I felt like I got hit by a MACK truck....complete with wanting to puke my brains out first thing as I got up this morning. Because I was feeling so awful, I ended up running late and literally RUNNING to the train and getting there the same time as the train. I dragged myself througbh the day because I had an insane assignment with one baby that went to the OR and another one that was transported by helicopter to us. It was incredibly stressful and I couldn't eat in the morning - the first time I got anything for lunch was 3:30pm. Certainly didn't help. I doubt it was a good idea to undertake this drug the day before I went to work for 12 hours...ugh.... And why do I feel like the first time with this is probably going to be much better than the cumulative effects of taking this for several weeks? I don't think my side effects were near as bad as they could have been, but they definitely set in more today as far as the nausea and fatigue... bleh.... Hugz, Carrie |
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Title: Re: Need a few good vibes today... Post by cootie on Jun 20th, 2006, 12:29am I couldn't handle that drug......no way......but I hoped it'd work for you. I just can't get myself to take meds that cause an entire new set of problems to suffer from that put me DOWN like that and seems if ya keep it up it will leave you dull and lifeless. Then ya got a new set or issues and a hole to climb back out of if ya can and can see what it is doing to ya if the side effects are goin to effect your QUALITY of life. Sorry....did that make any sense at all ? I tested negative for RA and was hopein my new doc didn't suspect it either way and try to get me to take that stuff........no way !!! I am way too busy and do too much to let anything make anything any worse........ya wanna get better not worse. So that's my thoughts on it all........went thru a spell where my hand joints swelled and got sore recently......wrists swell too and lots of aches other places real bad someones one sided tho. Pain management is my choice......I get alot done and it's lettin me keep up to my old pace and I do what I wanna do.......and I feel better (not druggy or dopey cuz THAT is not what I want and would not help me keep moveing and stay so active). Pain is still there when I do much or sit long or bend over........or walk on uneven ground (TORTURE !!!) but I feel what I am doing has kept me more.......ME. My girlfriend was on sumthin for her RA and was the chemo pills she said........she took them for a while but her symptoms got worse and worse. She would only take her doses on weekends so she could lay around or sleep cuz she felt so tired and sick. Dureing the week she was needed to haul her husband to theropy for his leg he almost lost in a bike accident last year when we were with him and she has to drive him to work so he can get the hang of his new lighter position while he is learning to get around and possibly drive himself. So she waited to take her meds on weekends so she could DISAPEAR......gosh we didn't hear from her for a long long time and just seen her not long ago and she gained about 50 lbs or more. She's on sum sort of antiinflmatory now which caused her to gain tons and tons of weight fast. She said she is so fat now her chest hurts to breath so she was goin to stop that med too. She found a part time job and has to have the strength to go and stopped the chemo med and started the antiinflamatory crap that has effected her weight so horrbly bad. She said she feels MISERABLE this way. So.....I guess ya gotta outwiegh the problem and the meds and the reactions and is it all worth it and is it doing you some good in the long run to stick with it ??? I wanna keep goin and carry on as usual Pam Good luck with it all and hope sumthing starts to help you !!!!! |
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Title: Re: Need a few good vibes today... Post by lionsound on Jun 20th, 2006, 4:34am [smiley=hug.gif] |
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Title: Re: Need a few good vibes today... Post by BarbaraD on Jun 20th, 2006, 8:38pm Hang in there Liz -- it will get better. Big hugs from Texas here (or LA - whatever) Hugs BD |
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