i might be new....can't remember

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Juliah
Regular Member


Date Joined Mar 2005
Total Posts : 21
   Posted 8/30/2005 4:46 PM (GMT -7)   
I can't even remember if I've ever posted here before. My memory stinks. I was diagnosed with RA about 6 months ago and have been on plaquenil. I haven't been back to the rheumatologist in a few months because of financial issues. I'm hoping to go back in the next month. I haven't noticed a lot of success with plaquenil, has anyone else gotten by with just that? I have some other health problems that have taken precedence lately...I have cardiomyopathy (congestive heart failure) and ulcerative colitis. I've been losing weight lately and feeling very drained. I haven't felt much like working (I'm a mental health therapist) and we are really struggling financially...which has been very stressful. Anyone else ever made it out of a financial black hole and have tips for me???? I feel lost and drowning right now. I'm grateful that I'm still alive and that things aren't worse....I know so many are much sicker than I am. I hope all of you are doing ok and feeling better each and every day. With love, Juliah

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/30/2005 5:37 PM (GMT -7)   
Juliah,
I am in a financial black hole as we speak. I was working only once a week and could not do that anymore, couldn't use my arms and hands.
I too was Dx with UC on august 5th. It feels terrible to be so weak. Even standing on line is torture and walking too, on top of RA.
The smartest thing I did was apply for Medicaid, SSI and DIS. Also, if you feel you need good RA treatment Humira has a program you apply for by your doctor to get the med at little or no cost which can help your RA from progressing to a point where you HAVE to apply for disability.
Tell the rheummy about the money problems...i did and i got a few visits at no charge.
How many days a week do you work? Can your job put you on temporary disability for a while?? that would be worth asking until you get better treatment to get this under control.
My next step will be dealing with credit cards...in a month i will not be able to pay them, and really do not want to file banckruptcy.
Do you have any family support??
All of this finacial matters has given me a great deal of anxiety, i never thought i would get to the point where i wasn't able to support myself (i'm only 24!).
i'm really hoping i get approved for supplemental income.
this is difficult to go through...no back up plans. who would have thought this anyway.
check out your states public assistance programs. i don't know your income, but i know you have to be under a certain yearly income to qualify.
my heart is with you.
erin

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 8/30/2005 9:20 PM (GMT -7)   
I've been on plaquinil and Motrin only for  a few months - no miracle, but helping quite a bit. I stopped Remicade on may 1st. I take plaqunil 2x a day - one time a day isn't enough and I often can "feel" it when I don't take it - which is actually a good thing as SO many of the meds I've tried in the past do nothing. However, I've been having a lot of blurriness in my eyes and I don't know if it is from the med or some new allergies I may have suddenly.
 
Have you tried taking folic acid or a B super complex vitamin? I know when I was on methotrexate, I was told to take a lot of extra, and my doctor now even tells me to stick with taking it regulary as the disease and these meds are draining. It DOES help with fatigue some (at least for me) and I know the doc was even discussing giving me a vitamin B shot. It's like vitamin C - it doesn't effect the liver and you cannot OD on it, but I don't know if has any reprocussions on UC. Also, if you are not accustomed to taking vitamins, start slowly and keep an eye out for reactions (especially if your health is not tip top) as you may have a reaction (such as hives) and will have to back off and start over again slowly.
 
**
 


Juliah
Regular Member


Date Joined Mar 2005
Total Posts : 21
   Posted 9/1/2005 9:52 AM (GMT -7)   
Thank you so much for replying Erin. It helps to know that someone out there relates, though I am sorry to hear of the struggles that you are feacing as well. I may come to a time where disability (SSI) is necessary. I hope this is not the time. I really enjoy working and most months I can make more than SSI would bring in. I don't have any benefits where I work because I am in private practice. My husband is a teacher and what he brings in does not cover our bills each month. I am seeking ways to cut down on our monthly expenses. Good advice about telling the rheumy about financial problems...I will do that. Also, thanks for the info about humira! Love and hugs to you Erin! Love, Juliah

Juliah
Regular Member


Date Joined Mar 2005
Total Posts : 21
   Posted 9/1/2005 9:55 AM (GMT -7)   
CAMama...thanks for your response! Do you take plaquenil in the morning and at night? I had only been taking it in the morning, but will talk to my rheumy about adding the additional dosage. Thanks also for the info on vitamins....I will talk to my docs about taking the folic acid and super B complex. Thanks so much for writing! Love and hugs, Juliah

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/2/2005 12:30 AM (GMT -7)   

Juliah, :-)

it is funny how many of the same complications we have!  this systemic stuff is the pits.

you know...since you're a mental health therapist, you are  a valuable asset!!  Flopsie has devised a scheduled chat on "coping mechanisms".  that's your area lady!!! cool

i hear ya with work.  i hated having to quit.  just one day a week i worked for a long time, and that deemed too much. sad

i am planning on VOLUNTEERING @ an old place where i used to work at.  they'de love that eh?! tongue  but i have to do it.  i NEED to be helping people and using my skills.  it's such a big part of me & when i left work in May i lost a big chunk of "me" and need to get that me back for myself and my relationship.

i loved my psych rotation in nursing school.  what demographic do you work with? 

take good care

erin 


Juliah
Regular Member


Date Joined Mar 2005
Total Posts : 21
   Posted 9/2/2005 6:57 AM (GMT -7)   
Erin, you sound like a very strong woman! I admire you!

I am a children/family therapist. I love working with kids and their families!

I'd love to be a part of chat! When is it????

love and hugs, Juliah

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/2/2005 10:53 AM (GMT -7)   
Juliah,
Flopsie has the chat date listed & time...i have to double check myself.
We have some recruiting to do!!! last week i understand was a no show...but then again, there was a lot of tragedies going on at that time with storms and all...so maybe things have calmed down for this week.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 9/2/2005 8:26 PM (GMT -7)   
Yes, I take the plaquinil w/breakfast and dinner. I take motrin mid-day. If I feel I can skip that, I will, but end up more often than not, having to take it before late afternoon hits. My stomach is starting to react to it as I've been taking it pretty regularly for a month or two now....PCP was supposed to Rx a med for it to avoid ulcer/problems and forgot. She told me, 'if you feel pain - it's too late' - doh! My bad and now probably my pain! sad
 
**
 

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