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Posted 8/26/2005 6:35 PM (GMT 0)
i really hate to write this, but i am desperate to know of anyone who has hit absolute rock-bottom.  this has been the worst i have ever been.

i'm really sad that i am not responding to all of the meds i've been on & i'm afraid of what the near future brings.

i probably wouldn't be feeling this way if i had at least a glimpse of improvement.

days like today are really devastating when the least that i am doing is trying to prepare for an exam and i can't recline long enough or sit upright to study due to back and joint pain.  barely made it through a shower, enough to stand up.

i never thought this would get to a crippling point.

the last time i was able to be functional was back in like the very beginning June, end of May.  and by that i mean :walk a little everyday, enjoy the day, do moderate things with tolerable pain, and work 1 to 2 days a week.

i feel like a failure on top of feeling worthless.

i've noticed my range of motion is getting less also.

my ability to not write very well or long enough bothers me tremendously.

trying to hold things to eat or drink or even carrying a bag is bad.

i have no back-up plans.  i thought that by now i would be able to take care of and support myself and be able capable.

is it possible for someone to not respond/get into a remission despite taking biologics?

i know some people never respond to biologics & Dmards and end up going in for joint replacemts...how fair is that?  that's a horrible thing.

this is starting to get very depressing.  it's like being a prisoner.  i don't know if i am handling this disease well anymore.  if something positive would happen i suppose i would have a little more confidence.  i mean, i'm 24 and getting knocked out from taking a shower because it's exhausting and it hurts to hold a washclothe??  there was time were i had to crawl to the bathroom because i was too weak and in pain to walk, but that was years ago; i had a different picture in my head as what this time would be like.

i don't know...i don't like the unpredictableness of this.  trying to keep things in perspective like remembering i'm fortunate enough to breath on my own and i'm not paralyzed.

perhaps i need help in trying to adjust to this.

thanks for listening

erin    

Posted 8/26/2005 6:59 PM (GMT 0)
Be patient and hang in there.
I was told, and have read several places, that Enbrel and MTX usually take 4-8 weeks to start working, and that was my experience. If I remember correctly, you have been on the Humira for about 3 weeks now. I would guess that it may take just as long as Enbrel to kick in.
It seems that everyone who can tolerate Enbrel/Remicade/Humira has gotten some relief, unfortunately not everybody can tolerate these drugs. I have not heard of anyone who can stay on these who doesn't feel better, any other opinions out there?

Don't get down on yourself Erin, and don't give up. Get angry, get mean, get upset ... at the disease, and keep trying and fighting.
Oh, and talk to your Rheumatologist daily if that is what it takes, asks them what to expect and how long it will take. If they tell you to be patient (as I have been told) then do it.
Craig
Posted 8/26/2005 7:55 PM (GMT 0)

Erin!!!! Ask for help. Call your PP if need be and ask to be referred to someone you can talk to. Even call your clinic/hospital/medical group to find a support group or counceling so it doesn't cost you anything. I'm awful AWFUL about asking for help and boy I really SHOULD have many times. I've been bed ridden for months on end before barely conscious enough to watch my children grow. I wasn't able/allowed to even have my kids SIT on my lap for over 4 months!  I've thought maybe the family would be better off if I just wasn't here being a burden.  But, things will get better, but it is SO HARD to see that light when it can take SO LONG and you don't get the RELIEF you need. You really need to talk to someone who can help manage your pain via regular discussion and possibly meds.

You have to keep fighting those doctors and get some answers! Like Craig said, keep fighting! You are such a wonderful soul Erin, don't let this knock you down for long - get up and keep at those doctors for answers!!!!

Your depression CAN and WILL make this worse - trust me, I know from personal experience and from a family memeber who's undiaganosed depression caused her to be a bed-ridden hermit for 2 years (the physical problems she endured would blow your mind.) GET HELP - you are going through WAY TOO MUCH to handle this alone w/o more help!

Hang in there, things will get better!

***

Posted 8/26/2005 8:20 PM (GMT 0)
Erin: Please listen to CaMama she is absoultly correct on asking for help. Has it crossed anybody's mind maybe the MTX might be making her feel worse? It just seemed to drain me then it got the the point I physically got ill. I now take a different anti inflamatory.

Saying a prayer for you keep on fighting I know it is so hard.
Catz
Posted 8/26/2005 8:33 PM (GMT 0)
YES CRAIG, YES CAMAMA,

Erin please listen to the wonderful advice you have been given.

Fight! You are way too young and smart to lie down and let this illness get the best of you. From what I am hearing in your writings, you are about to let DEPRESSION knock you down.

Call the doctor, go to the nearest Mental health Clinic, they will help you with this. YOU CAN NOT LET IT WIN!

 

I know you have said that you do not want to take meds for this and you  do not think you are depressed, but girlfriend, I think you need to rethink that decision. You know from your education, when we are in constant pain...depression follows.

Call the doc and talk to them about the (I forgot to remember what med you are on Enbrel/Humira?) med. As Craig said, it may take more time for that to start working for you. However, you need to address the Depression TODAY! No quality of life, because you let THAT MONSTER defeat you, that is not our erin. Our erin is a bright woman who will do everything in her power to overcome, if only she will accept and acknowledge this problem.

We love you and want you better. Please listen to advice you would give to a patient in the same situation.

flopsie

Posted 8/28/2005 12:20 PM (GMT 0)

Erin, I just "met" you thru this forum and I think you are awesome.  I cannot imagine going thru school with all of this and you are doing it.  So it takes years, you will get there.  You need to take care of yourself and start by calling your doc.  At one point my PCP gave me his personal office line because he knew I hated calling and getting the receptionist.  He knew that I was depressed even though I fought that diagnosis and meds too.  Finally I just gave up and trusted his judgment and now I feel better.  I don't really like myself on antidepressants either but I don't spend hours every day contemplating what might have been.

Posted 8/30/2005 11:07 PM (GMT 0)

i know that Craig will be very happy to read this post and what i have to say.

reality:  i am not making physical improvements.

so my plan of action is the following:

i would rather be ill and happy than ill and miserable

so i am going into full Yoda mode, "either Do or Do not...there is no try..."   StarWars can be very philosophical can't it???

i know i can not hold a part time job, so i will be DOING my specialty clinincal rounds starting in 2 weeks and volunteering @ the infusion center when i have extra time.  

i'm just going to start.  not going to think about what my body is like at the end of the day or how difficult it is to do things. and the only way i will not DO is if i get sent home by supervisors or something.

no more "letting my body take time to heal and take a break".  i've been taking a break since May....and it ain't gettin any better.

i know this will get "me" back....which i feel will be the best healing of all.

love

erin 

Posted 8/30/2005 11:48 PM (GMT 0)
Erin,
I always tell my son (12 y.o.) to do smart things, I think it is good advice for anyone at any age. Of course, it is not always easy to determine what smart is.
You have to make sure you get out of your own way, that you are not part of the problem, but you also have to listen to your body, and know when to take it easy.
It was easy for me before the disease, if I did not feel like working out hard, I was being lazy, plain and simple. Now, it is not so simple, sometimes I can get stronger by taking it easy. I'm still trying to figure this all out, I suspect I will be for some time to come.

I don't want you to make yourself sicker by working yourself too hard, but I don't want you to get in your own way of recover either by just sitting back (miserably) waiting for the drugs to take control.
Either way, a positive, take charge attitude will help, I have no doubt about that. And instead of focusing on the pains, disappointments, and short-comings of the day, find the things you improved on, the moments you forgot about the pain, the aspects of the day that went well because you made them go well.

Life is not quantum, very few things happen in great and glorious leaps (accept in movies). It is a collection of small improvements, little, almost imperceptable changes in direction, movements towards the person you think you want to become, and if all goes well, probably never reach (who can't keep improving).

I'm glad that you "know" the approach to take, and you very well may be right, but don't be too proud or foolish to change that goal as you go. And don't forget, you will have setbacks, but you'll have to fight through them. Everyone has setbacks, everyone, but fighting through them is what really sets some people apart.

Do or Do not, there is no try!
Craig, owner/operator of the Pekingnese Ranch
Posted 8/31/2005 1:26 AM (GMT 0)

Very nice words, Craig!

Also, Erin, don't forget - you are doing wonders here on HW. You were really there for me when I started in here and were such a positive inspiriation with your kind and energetic words. I know it is not the same helping people face to face, but watch out, like Craig said, for getting in your own way!

**

Posted 8/31/2005 1:49 AM (GMT 0)
same to you Camama...i'll never forget our late nite chat way back.
sometimes i know i work on adrenaline and shear determination and challenge.
i am giving this my best go!
if you can understand this...i found on days when i was in the hospital doing rounds and caring for patients...it was the ONLY time i was "outside" myself. in nursing...you have to be 300% to your patient and YOU do not matter. and i kinda like that.
it will be risky....but i yearn for it and i think by doing this it will help me mentally.
if it so happens that i get really really bad to the point where i will harm myself i will stop.
but staying home is literally killing me. i am not getting any better and i want to at least accomplish some dreams and goals.
i know when to throw in the flag.
i really do love it here at HW and i have grown so much and love talking to you and everyone. we all help each other. this is what makes the world go round.
i don't know what the future has in store for me and i have waited long enough....i want to at least be able to say i never gave up.
people will be mad at me (my mother does not know i am doing this). my family thinks i should be on disability..i think so too...but i have to take action now or else i'll fall into a great depression.
this decision may be very good for me and i will not know until i start.
i have to save me & my relationship. and a big part of me is my love for nursing and helping others. i need to focus on happiness.
this will not be easy...but it's something i must do.
so keep your fingers crossed!!! i am thoroughly psyched to do this. who knows...shear will and drive might pull me out of the flare and maybe i will start to gain some stamina and muscle back.
{{{{{{{{{{ hugs }}}}}}}}}}}}
erin
Posted 8/31/2005 1:55 AM (GMT 0)
and thanks Craig,
i definitely know when enough is enough. but sometimes by just "doing" and not thinking too much about it got me through some terrible ordeals.
i truly believe by doing this i will gain some confidence and therfore it will slip over to my physical well being.
i have a lot of aspirations and i don't want to leave or quit them.
so we shall see what the next few weeks may bring
you're the best
erin
Posted 8/31/2005 1:56 AM (GMT 0)
Sometimes Erin it is all in the motivation. You go girl and knock 'em dead. (Not literally). I am behind you here!!!! You have the determination to do this and do it well. Sometimes the best healing comes when we stop thinking about the disease and start living life. I wish you all the best and hope that you can finish your clinical with lots and lots of energy to spare.
I'll be praying for you through all of this.
Oreo
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