Update on my 1st year

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_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 3/4/2009 11:13 PM (GMT -7)   
 I have gotten so much help from this group over the last year since first finding out about my test results, I feel that this is an update that I owe to all of you.  It has been just over one year since getting the test results that started this journey.  I always feel that at the end of a year is a good time to review what has been done.
(to those of you who remember that I am Bipolar- I am on the "downswing" from a mini-manic)
One year ago I was still dealing with my Bipolar diagnosis and trying to find the right combination of medications.  I was a full time first year student at the local community college, and taking care of my 3 young children.  My Husband was also a full time student at the same school and working full time at the local hospital as a CNA.  We did not have time for any more medical problems. 
Then I started to notice that I had a harder time typing than my husband did.  I also could not grip and lift my laptop without pain in my wrist and elbow.  Shortly after it became impossable to hold up pitchers, pass plates, lift groceries and so on.  It was less than 2 weeks later that I had difficulty gripping a ballpoint pen and pressing it down on the paper hard enough to write without pain that shot through my hand and up my arm clear to the shoulder.  That's when I went to the doctor.  
I got a notetaker from the disability office and a voice command program for my laptop.  A couple of weeks later I had so much pain in my hips, knees and feet that I was shuffleing from class to class looking like an idiot in the halls.  At the time I was wishing for a 'riding chair' to get me from class to class.  I took my finals sitting in "cushy chairs" pulled in from the hall because I could not stand to sit in the classroom chairs at the time.  I have not been back to school since that time.
 
For the next few months I have watched my health 'crash' more than I ever thought it would, but if it was just my health that went wrong I might have been able to accept it.  The following school year we decided that I would consintrate on caring for the kids, house and getting my new health issues stable.  He was going to enter the "Nursing" program at school, and continue to work.  Thats a tall order even if you don't have issues at home.  Going into the program we had planned to supplement our income with a student loan- but because of the bank crisis the loan was never delivered on.  We got through the year without the loan, but fell behind on some bills. 
All the while my medical costs continue to grow.  It seems that each time I go to the doctor we start talking about a new medication to add.  No matter what we add I would go through times where I could bearly get out of bed from the pain/fatigue that I was feeling.  Even if I did get up, I didn't get much done because it hurt too much or I was loopy from the pain meds.  My wonderful husband couldn't leave me on my own, so he sometimes set aside studying to take care of household needs. In doing this he lost his position in the Nursing Program.  He swares that it wasn't my fault- but you know that it is.
 
Now we are waiting for the new progran to start up, praying for new school loans, paying our current school loans without the benifet of better jobs/ more money to pay for them.  I am still unable to get a job or return to school, leaving the entire burden on my husband.  I would want to help- but we still haven't found a combination that gives me any type of control.  Some days I look and feel fine- other days

_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 3/4/2009 11:57 PM (GMT -7)   
other days I can hardly function.  It's not just that the joints in my hands, feet, knees, elbows, shoulders and hips might feel like they have 'ceased'.  Sometimes it feels like the joints have "crap" in them, like crosion arround an old battery, that needs to be cleaned out.  Sometimes it's just plain pain.  Like walking into a wall and rapping you hand against the wall- but I didn't and it still feels that way.
It's not just the physical discomfort that keeps me from going back to a job.  Between the bipolar medications, the prednisone, the MTX, the Vicodin and so on- I have this enormous FOG in my head.  Sometimes I have this clear ray of sunshine that produces a clear thought, and if I am lucky I can verbalize it before it dissapears.   But most of the time I wander through the fog in my breain just trying to put together a clear thought. (What do I make for dinner?  Do I have everything I need for that meal?  Is there anyone coming over tonight- how many am I feeding?  Do my kids have homework tonight?  Have they got it done?  Is their laundry done?  Is My laundry done?) I have taken to making lists whenever I have a thought about it, and keeping the book of lists with me.
I would like to be able to help my husband provide for the family (he's working 1-2 extra shifts every week for overtime.  I'm afraid he'sgoing to work himself to death) But I don't think I could hold a position in my current health.  Even if I could get hired to a job that I could do without much difficulty or discomfort, I think the regular "bad" days and constant "FOG" would make me at danger to loose my job at any time.
Now we are in a position that we put more money aside for medication co-pays then we do for food to feed a family of five.  I am looking at what meds can I do without for the sake of putting more money back into the family budget.  I had considered going to a chiropractor who had some ideas on decreasing pain in some of the bigger joints, but decided not to try it because of the additional cost in co-pays.
Did you know that when you start stressing about money (or other stressers) you can bring on the pain- even if you started the day on a good note.  Everything medical is connected to a financial worry as well.  I like being at home and taking care of the kids.  I hope to oneday have RA under control enough that I can do that with more ease.  Right now it is sometimes a struggle just to make the enviroment that they live in healthy for them.
 
There is no real ending here.  I don't know what to do- and don't feel like I explained it well.  In the end- I just want to "get better" and be like I was before I had any pain.

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 3/5/2009 12:58 AM (GMT -7)   

Oh boy, Christina. Thanks for the update, but I wish it had better news!

I completely feel for you, my kids are 7 and 9 and much of their lives I have been in a fog, sick in bed, etc. The steriods can put you in a HUGE fog. It can also make your bones brittle if you take them too long. Is it possible you can stop taking them? Are they even helping? I felt like I was living in a glass box filled with fog when I was on them and I don't think they gave me much (if any) relief.

I wish I had some answers to help you get through this, I've been through similar times....never got any help/relief...just time and things finally calmed down. But like you, 'time' was a really long, stressful, I-don't-know-how-much-longer-I-can-take-this...amount. Maybe it was changes in meds that eventually helped, maybe not...I don't know. 

Is it possible one of your meds is causing this extreme pain? As either a side-effect on its own or b/c it's interacting with something else? Next time your doc wants to try something new - ask for SAMPLES before you go and buy something new. They have them. That's what they are there for. What do they say about your pain?

My prayers are with you and your family.

***
 


_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 3/5/2009 9:01 PM (GMT -7)   

When I wrote this post it was waaaay late at night, feeling very sorry for myself, and after I took my ambien- so I don't even remember writing most of it.  I changed my signature to list all of my meds like some of the other signatures I've seen.  If anyone sees something jump out funny, please let me know.

This morning my husband came home from work (overnights) and told me that he would like me to look for a part-time job to bring in the extra income.  Just 4-5 hours a few days a week doing anything I think I can handle.  I don't know what I could handle.  The last time I held a job I was an undiagnosed, untreated bipolar.  I used the manic to do wonderful things, and was able to use it to carry over my depressions so they weren't so noticeable.  I don't have that anymore.  I don't have a manic to cover over the "bad days" of the RA. 

My pastor came over today to see if I was OK.  I was pretty pathetic on Sunday.  I had pain in my elbow that shot down my arm and into my hand.  It ceased up my wrist, my thumb and my smaller fingers, curling them under.  I hurt so bad that I just held my hand to my chest and used my left hand all morning.  It was like knocking my "funny bone"- but I hadn't.  Over the course of the service it "hit" my other side, but not as bad.  My knees, ankles and toes started to ache.  A friend offered to come over and watch the kids while I took a nap (it was that obvious) and I slept on and off for the rest of the day and night.  Wednesday night I was too fatigued, too cold, too sore to collect the kids and go anywhere.  She caught me just as I took more motrin- so I think I scared her a little.

With all that is going on- on one hand I hope I get offered help.  On the other hand, I hate being the "needy friend".  I know there will be times that I need the help even more than I do now.  I don't want my friends to get burnt out before I really need them.

 

 


 
 
Christina
 
Current medications:
Bipolar treatment-Lamictal, 200mg, Mood stabelizer, daily(main side effect: brain fog) Bipolar treatment-Cymbalta, 40mg, Antidepressant, daily(main side effect: GI upset, decreased clotting, insominia) Anemia, Fatigue treatment- Iron supplement, 65mg, daily(main side effect: constipation) Insominia treatment- Ambien, 10mg, daily(main side effect: amnesia eppisodes between taking pill and falling asleep) Mania treatment- Alprazolam, .25mg, Very rarely(main side effect: fatigue, slowing of thoughts, depression of CNS, can't take ambien or vicodin when on it) RA treatment- Plaquenil, 400mg, daily(main side effect: GI upset, decreased clotting) RA treatment- Methotrexate, 25mg, 1X weekly(main side effects: hair loss, stomach upset, mouth sores, sore muscles, fatigue, brain fog, compromised immune system, decreased Folic Acid absorption) GI upset treatment- Leucovorin Calcium, 10mg 1x weekly(main side effects: ?) Folic Acid defintioncy- Folic Acid, 1mg, daily(main side effects: ?) RA treatment- Prednisone, 8mg(and decreasing...)daily(main side effects: increased manic eppisodes, constipation, brain fog, bone density degeneration, compromised immune system) Multi-mineral Supplement (main side effects: constipation, GI upset) Constipation treatment- Docusate Sodium, 200mg, daily(main side effects:?) pain control- Motrin, 800mg, PRN Q6hours daily(main side effects: GI upset, decreased clotting) Pain Control- Vicodin, 5-500mg, PRN Q12hours regularly (main side effects: brain fog, fatigue)
 
 
 
 


_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 3/6/2009 10:08 AM (GMT -7)   

Today I'm not so bad.  My wrists hurt.  I look at the palm side/pinkie side of my wrist expecting to see a bruise, but I don't.  The pain all comes from within.  My fingers are stiff and sore.  I look at them and expect to see scabs covering the knuckle causing the stiffness and pain, there is no reason for scabs and they're not there.  All the pain comes from within. 

Today my sholders and elbows are sore, but no more than they would be if I had worked out hard yesterday.  The Motrin doesn't seem to do anything for it today.  My hips feel stiff, so do my knees, but not as painfull as they sometimes are.  My ankles and toes are sore when I sit and hurt when I walk.  Today the "fog" seems "thinner" and I don't have a headache.

My fingers are so stiff that yesterday while I was cutting into an apple for my daughter I sliced into my thumb.  I just didn't have the finger dexterity to cut it without cutting myself.  My finger is fine, I covered it in antibiotic gel and a bandaid.  It's cut at a bias, so the "flap" is held to the wound without stiches or a "butterfly" bandage.  I assume it will heal quickly as long as I keep it clean and bandaged. (A Dr. can do no more than I did at home)  Because of the MTX and Prednisone I will watch it for infection.  It sounds a lot more serious than it is.

Does anyone else have more pain in the "dominate side"  of the body?  My right hand always hurts first and worse than my left.  same with my knees, sholders, elbows and feet.  I always notice the right side pain first, then notice the left, but the left never hurst quite as bad as the right.  Is this simply because I am more aware of the right side of my body?  Could it be becaues I use this side so much more there is more inflamation on that side? Dose anyone else notice this?


 
 
Christina
 
Current medications:
Bipolar treatment-Lamictal, 200mg, Mood stabelizer, daily(main side effect: brain fog) Bipolar treatment-Cymbalta, 40mg, Antidepressant, daily(main side effect: GI upset, decreased clotting, insominia) Anemia, Fatigue treatment- Iron supplement, 65mg, daily(main side effect: constipation) Insominia treatment- Ambien, 10mg, daily(main side effect: amnesia eppisodes between taking pill and falling asleep) Mania treatment- Alprazolam, .25mg, Very rarely(main side effect: fatigue, slowing of thoughts, depression of CNS, can't take ambien or vicodin when on it) RA treatment- Plaquenil, 400mg, daily(main side effect: GI upset, decreased clotting) RA treatment- Methotrexate, 25mg, 1X weekly(main side effects: hair loss, stomach upset, mouth sores, sore muscles, fatigue, brain fog, compromised immune system, decreased Folic Acid absorption) GI upset treatment- Leucovorin Calcium, 10mg 1x weekly(main side effects: ?) Folic Acid defintioncy- Folic Acid, 1mg, daily(main side effects: ?) RA treatment- Prednisone, 8mg(and decreasing...)daily(main side effects: increased manic eppisodes, constipation, brain fog, bone density degeneration, compromised immune system) Multi-mineral Supplement (main side effects: constipation, GI upset) Constipation treatment- Docusate Sodium, 200mg, daily(main side effects:?) pain control- Motrin, 800mg, PRN Q6hours daily(main side effects: GI upset, decreased clotting) Pain Control- Vicodin, 5-500mg, PRN Q12hours regularly (main side effects: brain fog, fatigue)
 
 
 
 

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