Author Topic: Bad Day  (Read 3367 times)

KoukiGirl

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Bad Day
« on: November 13, 2008, 12:01:47 PM »
I don't know exactly what section this should be under, but I felt the need to "let it out"

Today has been a horrible day. I'm laying on my bed with my laptop and just finding the motivation to sit up and type has been hard. My whole body aches. Everything tingles and every now and then I have sharper pains in random parts of my body and I'm not even moving. My legs and knees are bothering me the most. I feel so tired and so exhausted I don't even want to move to get something to eat. I want to fall asleep, but I'm having trouble because I can't seem to get comfortable. My body feels heavy and I'm sick of it.

Earlier today I got my paperwork to withdraw from the semester. I'm 19 and in my second year at UF. I struggled to keep up my first year at UF and my fatigue was so bad and at the time, I had no idea why. My parents just called me lazy all through high school and up until this summer/fall when I was diagnosed with Sjogrens, Rheumatoid arthritis and fibromyalgia.   It upsets me that it took so long to diagnose. I was having problems with fatigue and swollen salivary glands since I was 14 and it just started getting worse and worse. My primary doctor was convinced that it was nothing and that I should just eat better, and the ENT I went to said I had stones in my glands after having a CT scan when I was 17 and that there was nothing i could do for it except surgery (he didnt seem like he really had any idea what was wrong. stones was just a guess). But now, after a summer of a sleep test, and ultra sound, and 3 blood tests, they finally found the sjogrens. You'd think they couldve checked that earlier considering my symptoms hadn't changed.

But anyway, I was able to get aid from the disability resources center on campus, but by the time everything was official, I was already failing all of my classes. I'm having trouble figuring out what I want to do with my life because I'm already having so much trouble now. I've been on plaquenil (200mg twice a day) and prednisone (5mg a day) for a couple months now as well as daily calcium and vitamin D supplement, and regular multi-vitamin, but I still havent noticed a change.. How long do I have to wait before I start to notice a difference??

Sorry for the rant. I'm just really frustrated and dont know what I'm going to do for the rest of my life. I feel so useless.

Linda196

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Re: Bad Day
« Reply #1 on: November 13, 2008, 12:11:51 PM »
Go ahead and rant, Kouki, it's totally allowed here.

I know you feel useless, but you aren't, your just having a terrible time finding something you can do while you feel so lousy that will let you feel useful!

It takes a while for Plaquenil to show any effect, sometimes up to 6 months, and I know that's not what you want to hear. A low dose of Prednisone (and 5 mg/day is usually considered maintenance after having started on much higher doses, like 30-50 mg/day) might or might not have any effect, maybe your rheumy would consider a "burst and taper" form of treatment, starting on a higher dose for a period of about a week, then dropping it weekly, to see if it would effect the inflammation.

Sometimes the earliest stages of treatment (I won't say early stages of the disease because that's often years of being patted on the head and told to smarten up, as you well know) require a time out...a rest period while you get things controlled and are able to make a decision about how you're going to proceed with your life, allowing for some changes due to the chronic illness, without the pressures of trying to live that life and cope with a flare at the same time. You may need to stop other things for a bit and focus on treating the pain and fatigue, and once that's accomplished, start slowly to pick up your activities.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

eyeamdry

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Re: Bad Day
« Reply #2 on: November 13, 2008, 12:28:53 PM »
Ask your dr about adding methotrexate to your regimen.  You can get feeling better with this disease.  It isn't easy, but you really need to reach deep down and grit your teeth.  I try to make myself do some sort of "exercise" every day.  Even if it's a short walk or some floor exercises.  Don't give up, don't give in, remember this forum is full of people just like you.  Lucy

Katybarstool

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Re: Bad Day
« Reply #3 on: November 13, 2008, 12:47:01 PM »
Koouki

What a horrible time you have had. It's so difficult when you have a sick child and don't know what wrong - believe me, my son was the same in his late teens. As parents, we had to try to encourage him to do as much as he could, mainlyy to stop him getting too depressed, but also because we just did not know what we could do to help him. He finally got a diagnosis of fibromyalgia, but struggled very hard to keep his work. He's 26 now and still has fibro and other things. He has a partner and two small children and life is good for him now. Hopefully, once your drugs kick in, you will get your life back.

The people on the site are a Godsend. You will get lots of advice and support and, hopefully, have a giggle sometimes. That's what really helps, and knowing that other members know what you are talking about, and often have tips that can help you.

All the very best to you.

Kathyx

Victoria05202000

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Re: Bad Day
« Reply #4 on: November 13, 2008, 12:57:05 PM »
Kouki,

I am sorry you are having such a bad day.  Sometimes it feels like it is never ending.  I think the others have given you some good advice about the medicine.  Just hang in there and we will all get through this together. Sending hugs and prayers your way!

Vicky

pudmott

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Re: Bad Day
« Reply #5 on: November 13, 2008, 12:57:29 PM »
Hi Kouki,

rant all you want here honey. that's what we are here for.

Its hard when all you want to do is just crawl onder the covers and hide for a while. Especially when you are not sure of aclear direction that things are heading in. I have recently had to alter my career aspiratins as i could no longer physically cope with the demands of my job. it took a lot oflate nights and deep thinking to get to the point where i could make a decision.

Dont try and make any decisions about your future now. Concentrate on getting well. I think Linda's advice about asking your doc for a "burst and taper" dose of prednisone is a good idea. It might just get you over this hump and on the right path to maintenance.

remember come here anytime and let us know how you're doing.

Pud

Sandra

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Re: Bad Day
« Reply #6 on: November 13, 2008, 01:22:47 PM »
Boy , you deserve a medal. I'm 46 and this is hard to deal with. I mean my life is worked out and settled some and what i want to add i can. For you being as young as you are the hurdles in your mind must be pretty high. I do have some insight though as i became pretty sick very young to started about age 24. I went from full steam ahead to a grinding stop. It was real hard for the head to give allowance to the body. It took me 5 years before i met someone like myself at a hospital to recognize just how hard i was on myself. you see i had battle scars from not such informed doctors too. Constantly being told there's nothing wrong just get up is bad enough coming from a doctor but when parents, siblings and friends are given that same information it's much harder. But remember they are missing the information that you know, you feel it, you know somethings not right they can't know that. So it's hard to blame them, I learned to call them "those darn healthy people" ;D "they just don't know nothing". You are very lucky in a way, I had to wait 5 years to meet someone at a hospital, i didn't have a forum like this one. There is no way this many intelligent people could be wrong, you included. it's the ones who understand that learn to get the help they need, you obviously have started in the right place. making this illness and your body a friend, like it's a sick little kid helps me to take care of myself better. i love my little "kid self" so much she affords me everything good in life and when she gets sick i take care of her the very best i can first and formost. Lower the hurdles a bit maybe and allow yourself to rest and heal. This too shall pass and then you'll be off again. When it's real bad come here. Take care Sandra

Pooh

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Re: Bad Day
« Reply #7 on: November 13, 2008, 01:52:16 PM »
Kouki,
This is the place for all of us to rant, rage, smile, giggle and comfort those that need it.  It sounds like you need a good hug and some good chocolate  ;D if like it.  Maybe, a hot chocolate drink.  Chocolate always solves my problems, well, almost.  :D

As Linda said, the Plaquenil takes about 6 months to kick in and the Predisone "push" and "taper" will give it a kick start.  That's what my rheumy did for me also. 

Try to rest and get yourself together.  Leave all the worry of the future go for a while.  Find a spot to rest and relax, then tackle the big stuff when you're ready. 

Remember, "When you're here, you're never alone!"

Big hugs, Pooh

Collie

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Re: Bad Day
« Reply #8 on: November 13, 2008, 03:11:22 PM »
Kouki,

Everyone here has bad days, and wonders about his or hers future.  A few years ago, I was where you are now, going to school while dealing with an illness no believed I had; plus I was a single parent caring for a suicidal, schizophrenic child. I had to force myself to put one foot in front of the other and keep going; some days it seemed easier to give up, but then what would I have to look forward to, what goals would I have to accomplish.

I know it is hard, but do not give in; do not let this disease have the victory!! It is OK to take time off for yourself just remember not to give up on your goals and dreams completely.

Sending big hugs

Collie

susanep

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Re: Bad Day
« Reply #9 on: November 13, 2008, 04:48:34 PM »
Kouki,   I am glad you are here with us to talk and say how you feel. It is a good thing to be able to come here and do just that very thing. A therapist once told me it helps to have a way to get emotions out and have a place for them to stick. He once told me to write in a journal and tell everything of how I feel. Well, I did until my (ex)husband got it without my permission  and read it.  ;D  I know life isn 't fair, it just is. We are all on the ride, like it or not.  ;)

At school today, I was trying , I say trying to teach these kids, who were doing everything ,but what they were suppose to be doing, while I was hurting so bad like you are talking about all over my body. My bosses attitude is basically , you either do the job or someone else will.  :o

I take one day at a time. It took me a couple of years to be able to do that. I am slow.lol.....I have grieved who I was , and still do at times. It does get better. Both the feelings, and the pain. We do have days where we get and think we could do everything. But, we have to remember we have only so many spoons to use, and I have to know where and with who I will use them on.

It's a process.

I still have a framed copy my mom gave me and my present wonderful husband, that says (God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference). I have oh so slowly really learned just what those words mean, as have many .

I have said a prayer for you. Please take care , and always come with all your feelings .

susanep :)
« Last Edit: November 16, 2008, 09:25:32 AM by susanep »
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

SeaBreeze

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Re: Bad Day
« Reply #10 on: November 13, 2008, 04:56:07 PM »
Hi...
Stick with us for awhile... I'm willing to bet everyone here knows about days like this... I'm kinda a newbie, started Plaquenil August 21 and I believe I'm somewhat improved at almost 3 months, though some/most don't see improvement for 6-8.  Like you I've been taking Vitamin D and I know that is helping... the spasms in my feet are much improved...

If you can, maybe try to weed out what is important 'today'... and leave the rest alone for awhile... When I was first diagnosed I had to stick with the very basics... Do whatever I can to help the pain; physical therapy, doctors or whatever, allow yourself to rest, monitor your mood for depression, and take advantage of the 'good days' to do errands or other stuff... I know its especially hard to walk away from school, but its really expensive to add/drop all year...

One little thing... When I was 25, I was telling a co-worker that I just couldn't go back to school... Afterall, I'd be 29 years old when I was done... She very quietly reminded me that I was going to be 29 anyway..HA !! I hadn't looked at it that way... She was about 60 and had just finished her Masters...  It is never too late... ever.............. Hang in there... Reach out here and get things off your chest...

MusicGuy

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Re: Bad Day
« Reply #11 on: November 14, 2008, 04:56:53 AM »
Kouki...
sorry to hear of yuor struggles...and at a younger age.  hopefully the meds will begin to help you and you can overcome most of the hurdles.  it does appear that we all experience this in varying ways.  i've on similar treatment plan....have been doing good but not anymore!  lol... it's a bad day today... darn lol.

good luck
Dave

lady nova

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Re: Bad Day
« Reply #12 on: November 15, 2008, 06:47:24 PM »
Hey Koukigirl,




    I really am sorry to hear that you are going through the same thing I did in college, except you are doing the right thing by withdrawing. I did not do that until I was forced to do it. During my college years, I was labeled with a million mental disorders it was unreal... well it felt like that anyway. It took me 7 years to finish college. I felt like lame... like a total loser because of it. My point of bringing this up is that so you know that it does not matter when you finish college. I have friends that finished on time, and in this economy they are still struggling to find a job. I doubt that your fellow classmates could get through a day with what you have or your professors for that matter. If they only lived in your body for a day they would probably go and cry to mommy because of the pain. So you have to remember that when you are feeling the way you do, and in school, it is like trying to run a marathon with broken legs, and arms, basically a broken body. Also, I wouldn't worry about the college thing right now, just focus on getting better. On a positive note, your classmates will be in thousands of dollars in debt and no job. So at least be thankful you don't have to worry about that so much. I really do wish you the best. I have been in your shoes. There is also a board on here for us "youngins" to post how we feel, or just whatever we need to say. Feel free to message me or e-mail me if you need to talk.


All Best,


Lady Nova :)