Rheumatoid Arthritis

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StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 12/26/2008 8:20 PM (GMT -7)   
Hi, I am new to this.  I have had RA for 45 yrs.  I was 14 & it just showed up.  I am now 59, married, have grown children & grandchildren.  My life went pretty well until menopause...then it fell apart.  Over the years I have tried so many things...I am just at the end of my rope...tired of feeling like a guinea pig!  Is there anyone out there that has RA as long as I have that can relate to me?  If so, let me hear from you. Thanks, StillStanding
 
 

Kangaroo
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 1/4/2009 6:54 AM (GMT -7)   
 
Dear Still Standing
 
Welcome to the forum. This is such a great site with lots of help and support.
I love your motto-"StillStanding"- it gives the impression that you have  gone through alot and have a lot of expertise to share. I am sorry to hear that you have live with rheumatiod for such a long time. It is such a horrible disease, and my heart goes out to you.
I haven't had the disease for as long as you have, but  I still think I can share with you as can all these lovely people on this forum who are so ready to offer help.
 
I have had severe rheumatiod for the past 11 years. I am finding it hard to remember what it is like to be able to sit on the floor or to walk without feeling I could loose my balance at any moment or to jump......
 
I went through surgical menopause about 6 years ago. I had a complete hysterectomy
due to severe endometriosis. This brought on menopause. I found it necessary to go on HRT(hormone replacement therapy) for a couple of years to keep me feeling sane.
 
As to trying new things ie. being a guinea pig,we are so privledged to have so many new drugs becoming available for rheumatiod. And the newest ones ie. the biologicals work like magic. Check out what others are saying about the relief that they are getting from these new treatments.
 
StillStanding, it can get annoying that flares come, but we can have hope that relief is just around the corner, remaining postitve is something that can help tremendously.
 
 
So keep standing and get some expert advise from a good rhemy. What meds. are you taking? I am currently enjoying the extra freedom of Rituxan (rituximab/Mabthera). This is an infusion that lasts for 6 mths. Over time, I am weaning myself off steroids as this biological takes effect.
 
DebbieLou
DebbieLou


StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/4/2009 12:54 PM (GMT -7)   
Hi DebbieLou,
 
Thank you for your very nice note.  I'm so glad someone answered me.  I did choose my user name because I am happy to still be standing after so many years. 
 
It sounds like you have definitely had your share of pain & heartache with RA.  It is just a miserable disease.  It effects so many things, so many facets of your life & your loved ones lives.  Thank you for sharing your story with me. 
 
I woke up one morning at 14 and there it was, everywhere, except my spine...so I have always been thankful for that.
 
Back in 1963 no one knew what to do with a kid who had an "old person's disease"...my parents took me everywhere looking for help...the best I got was 17 Bufferin a day...really!! Then they found a doctor in the little town next to us...he gave me "mystery" injections and I did very well.  At 18 I moved, alone, from the cold of New Jersey, to the heat of Arizona, where my grandfather lived.
 
All 89lbs of me lived in the sun and I felt great.  I met my husband and we have 2 sons.  Years of running my husband's business office, raising the boys...baseball, soccer, PTA, you name, I would have flares but controllable.  So, I am very thankful I got to do the small things, tie my kids shoes, put on their socks, etc.
 
Now, I can't put on my own shoes and tie them.  I have had 7 surgeries; hands, feet & hip.  I have tried a zillion meds and yes, they work, but the side effects get me everytime...arava, humira, orencia & on & on.
 
Menopause really got me.  I fell into a terrible depression and am still fighting it.  Hopefully my positive attitude will win out as it got me through 45yrs! 
 
So, now you know my story.  Lots of downs, but still lots of ups!
 
I do believe some things happen for a reason...my doctor wants me to try Rituxin...and then you write telling me that is what you are using.  Could you tell me about it?
I'm so hoping it will be the one where the side effects don't get me.
 
Again, thank you for sharing your story with me and I hope today is a good day for you.  Take care & as my Mom always used to say  SMILE :)

Kangaroo
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 1/6/2009 6:07 AM (GMT -7)   

Hi there Still Standing

My RA also struck over night- I couldn't stand the weight of the sheets and I remember groaning with the  pain and then not able to stand. It was as if gravity was pulling me down with a force that I could not escape.Methotrexate and pregnosone along with lots of other drugs came into play over the years.

Pregnosone is the only one out of the dozens that has lasted the distance.

Now I am happy to say that rituximab has been my life saver for a year. yeah yeah yeah

Yes there has been some draw backs such as  minor re-occurring shingles; I know now how to stop them before they appear.

I have heard that some can get a shingles vaccine before the infusion, but that is not available here. Before the infusion I am offered panadol orally and fernergan (an anti histamine) and 5 mgs. of pregnosome in a prep. drip. As I already have a daily dose of anti-histimine(Claratyne) and panadol and pregnosone, they leave out the anti-histamine and panadol, but still give me the extra prenosone.

A nurse routinely monitors my blood pressure and makes sure all is well during my 5 hour infusion. Even though I am scared, all goes well. turn

Rituximab is great! 2 doses, 2 times a year is all that is needed.

It takes about 3 mths. to kick fully in.

I have greater strength, and more awake. I was pleased to be able to do a tech course last year. This was possible because of my new found stamina.

As to your depression, maybe the freedom that the Rituxan gives you may help. You poor thing, not being able to dress yourself is very frustrating (I know). Have you considered any hormone replacement therapy to get you over menopause and its wackiness? I found HRT helpful and is only necessary for a couple of years. Are you having panic attacks? I have had these, horrible, horrible................

I would agree, being positive is of great benefit. I also think that meetings are more than chance. I have a firm belief in God and His presence in my life. He is my strength.

Thanks for your encouraging words,

let me know your thoughts

[[[[[[[[[[[[[[[[gentle hugs]]]]]]]]]]]]]]]]]]

DebbieLou

 


DebbieLou


hopeful56
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/7/2009 12:01 PM (GMT -7)   
What an inspiration the two of u are. I was also diagnosed with RA almost 15 years ago at the age of 43 and like u both it hit overnight.I went to bed fine and in the middle of the night it hit and I was paralized from the neck down unable to take a deep breathe. I can honestly say nothing before or after has scared me so much. I had gone to the dentist a week before to get my teeth cleaned and they scraped my gums which resulted in an infection which resulted in antibiotics which is what they feel opened the door for the RA to take off. I had a baby at forty and during the pregnancy I got what they thought was pregnancy carpil tunnel but we now know was the onset of of RA.I like u both have been on all the drugs up to the cox-2 inhibitors at which point I said no more and now only treat the pain. Two years ago I went into remission and remain there now but the damage done prior to is extensive. I was once an active member of society but have now been house bound for the last four years. I have had fourteen surgeries, knees hips hands feet elbows and nine runs of chemo which has left my body old and tired. The panic attacks are just new but I think they are a result of the ativan and I  too am dealing with depression post menopause. Some days I feel like I am just a big baby other days I feel like I am a hero for still being a happy person who cares about life and other days I ask God if it will ever be better then this and if not how much longer. I think anyone who has a long term illness truly knows the meaning of a rollercoaster ride. My biggest mistake was and is isolating myself from the world. Because I am unable to plan ahead I have a tensity to exclude myself from getting involved which has left me feeling very sad and unimportant. I have come to learn this has also put a very big burden on my kids and something I have decided to change. I guess when I was a professional commanding a good salary I felt useful, when that was reduced down to disability I felt disabled and acted accordingly. It has taken too long for me to see all this but I am so grateful I am beginning to open the door and get involved and here talking about it all is a grateful beginning for me. I have written knowledge of the biologicals but no experience as far as using them. Because I am in remission and in this province they are doing trial tests still I am not a candidate and it is not covered so it is to expensive , I am told $6000 per infusion So for me it is pain meds and mental management for me and I am hoping that will be enough. Have a wonderful day and thank you for listening and sharing so I could.

pr glo
Regular Member


Date Joined May 2008
Total Posts : 78
   Posted 1/7/2009 1:09 PM (GMT -7)   
Hello StillStanding Thanks for writing I find a lot of similarities between you and me I am a 36 yrs old Hispanic Female with 3 kids Married and work full time as a Real Esate Paralegal but I have missed a lot of work due to pain and surgeries and Dr appointments in January of 2007 I was diagnosed with Psoratic Arthritis after too many years of pain all over my body I was told it was Fibromialgia for a long time, I was told it was just depression finally in 2007 I saw a Rheumatologist that tested me with bloodwork and x-rays etc... I am taking Remicade Infussion every 6 weeks and I take Hydrocodone for pain and 5mg prednisone daily and methotrexate once a week I too had a full hysterctomy back in march 2007 due to severe endemitriosis and my arthritis feels worse once I went into Memopause too I wonder why?? I took hormone pills for about 6mnths then I stopped I didn't see where it made a difference except me gaining more weight. I still have excruciating pain from Arthritis I have tried several meds and I also don't know what else to do I did enbrel shots before didn't work my Remicade Infussion has been increased twice so has my methotrexate and had to be reduced because my liver got swollen due to same. I have had cortisone shots,I used to take tylenol with coedine for pain, I just had gallbladder removed 12/11/08 because it was not functioning due to all the meds I have been taking and because of surgery I have not had my Remicade Infussion since 10/2008 so I feel worse than ususal. I also have Barrets Esophagus and take nexium for that and I had carpel tunnel surgery both hands in February of 2005 not inclusing two surgeries to remove endometriosis.  My Primary doctor has also put me on Effexor 75mg a day for depression because I'm just sooo tired like everyone else of being in pain and also being a guinea pig and no med helping I feel you pain and on top of everything I am also a caretaker for my 71 yr old aunt my mom's sister who has advanced alzheimers. Please pray for me and I will pray for you too. Hopefully soon we will be somewhat confortable and be able to do every day things without the pain and suffering. GodBless. PR Glo

StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/7/2009 3:30 PM (GMT -7)   
wink  Hi Girls,  Gosh I was so excited to see all your stories...I am not alone and neither are any of you. 
 
DebbieLou, thank you for the info on the Rituxin.  That really is my last hope, as far as drugs go.  The shingles thing bothers me, as 6 years ago, I had a run in with them...not fun.  If I can find a good place to go for the infusion, I guess I'll try it.  I have terrible veins and my doc's office IV nurse has a terrible time.  After 4 sticks & searching she says, "just hold on I'll run into something soon" !!! She almost did, my fist if I could make one wink  Needless to say, no IV that day.  My doc says 3-4 hr infusion for the Rituxin, I wonder why yours is different?  I'll let you know If I go for it & how I do Panic attacks, you bet!
 
Hi hopeful56,  Wow, quite a story.  All of these autoimmune diseases stink!  I hate to hear that now you are just doing pain management.  I definitely understand, as a week ago I had an epidural block at the top of my neck right into the spine.  They knocked me out, only took 15 minutes, & wow all the pain is gone & my neck moves great. They usually do these shots in a series of 2, but because the pain is totally gone, we're just going to see what happens.  He injected me with Decadron. 
The past year I have done exactly what you did...isolated myself terribly. nono   It's hard to keep up & most people don't understand the pain & limitations at times.  Every day, its an uphill battle to just shower or want to shower!  I've made myself call some friends & my sister, to try to change my ways.  Alone is bad.  My husband is my rock of 35yrs & is just wonderful, but I need to re-join the world.
 
I have a question for you hopeful56.  You said you used to work.  Why are you not on disability?  idea I have had disability through Medicare since 1979 (I was 30). They pay 80% of everything and I have AARP, which pays the 20%.  It costs me $195.00 a month.  AARP offers this 20% ins if you have Medicare even if your not a senior.  So, I am totally covered for anything, except of course the $195 a month.
 
Hi pr glo,  Aside from the arthritis/pain problems, we definitely have a lot in common.  In addition to my husband & boys, both my parents had Alzheimers.  My Mom 7 years, she died in 99 and my Dad, 8 yrs.  He died last year.  Talk about stress, which of course is the worst enemy for all of us!
I wish you lots of strength & hope in caring for your Aunt. 
Remember to just do what you can do, keep her safe & clean.
Alzheimers attackes the whole family, not just the person.
 
By the way, at 14, my niece's daughter woke up with RA too...now they are saying she also has fibromyalga.  We do have a lot in common.  Hang in there! yeah

cool cool cool   cool   cool   cool Anyone for a towel on a beach somewhere!

It seems all of us are dealing with not just the pain/fear & stress of these diseases, we're all dealing with side issues, one of which is depression sad

When my Dad died last year, we were very close, that is what started my panic attacks.  My husband rushed me to the hospital with shakes I couldn't control & the left side of my face & arm were numb...I thought stroke!!! Nope, panic attack.  My doc put me on 30mg Cymbalta daily and ativan when needed...gosh worked like a charm.  Lots of deep breathing exercises and realizing when one is coming on and taking the ativan was the key to controlling them.  Also, me walking around like a nut talking to myself, saying I'm ok, I'm ok... That was 8 months ago and I'm now down to 20mg of Cymbalta and hardly need the Ativan.
 
Well, I better stop this book for now.  Because I'm new at this forum I couldn't figure out how to write each of you individually, so I hope I'm doing this right.
 
Everyone take care.  We all need to think positive for each other and hope they could find a cure...my guess is it all has to do with hormones.  Hope to hear from you all again tongue
LindaAnn
 
 

hopeful56
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/8/2009 10:10 AM (GMT -7)   
Thank you for your supportive words. I am on disability but in Canada and the two medication and disability do not go hand in hand. Here as far as I know disability is just a paycheck with no options for walking aides or experimental drugs. You either have the coverage through a spouse or pharmacare and because the biologicals are all new and experimental they are not covered for everyone. I am in clinical remission so I do not qualify and any damage done is treated with pain meds. I was curious if the biologicals could prevent future flairs some say yes and some say no but either way until I am out of remission no biologicals for me. I have tried all the other pre-bio medications and had no success so opted to stop playing around and just deal with the pain. It was good for a long time but now the fatigue is winning and I am not as mobile as I once was. I need to replace my right knee and hip butfeel my health is not stable enough. Am dealing with thyroid tumor and head anueryesum right now so will await all those tests and make deceisions from there. I too have a wonderful family but.....friends I have none as this illness has just lasted to long for the ones I had when it began and I have just not made the effort to meet new ones. I think I have falled into the feel sorry for me hole and have to exercise some real disicipline to get out. There are days the challenge is exciting and days when it is just exhausting, rather pull the covers over my head and sleep. So it is a full time job just trying to stay truthful with myself and keep a goal in front of me.Today I am going to do laundry and bake and if I can accomplish those two today i will do the happy dance, so my goals are small but critical to my survival. I guess the lonely one is turning out to be my biggest challenge. How to share my joy over doing two things with people who do two things before they get out of bed. It is a tough disease because it seems to be invisible to many, if I sit still in a crowd they have no clue until I have sat so long I need assisstance getting up so it is very hard to convince them I am an important part of society and worth listening to. I try not to discuss my illness because the content rarely changes, you know "same old same old" but sometimes I just want to be b..... about it cause it has been one of those days. I try to complain funny so as not to be a drag but I guess even the humor gets old. So here I am at lonely and I must confess of all the disease has done lonely is the  worst. I have taken to adopting my ego as my new friend and have some very challenging conversations but I guess I am the stae when I would like a laugh I didn't hear before or win an  arguement I did not manipulate. I really do enjoy meeting new people and learning new things so I determined to find a way to do just that because if I am sure of nothing else, this lonely business is not the way I want to leave this earth. So I hope everyone has a grand day and that whatever u do today it offers u the chance to make a difference in just one more persons life as you have mine by being here, listening and making me feel heard..Have a good one.

StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/8/2009 12:02 PM (GMT -7)   

Hi Hopeful56,

I'm so glad to hear from you.  I didn't know you were in Canada, so there goes the Medicare idea. shakehead

I'm so sorry you are so homebound.  This last year that is exactly where I have been, more or less.  Due to the arthritis and the economy...we only have 1 vehicle, so my husband goes to work, and I stay home...gas just got too expensive.  But, it really was okay I didn't & couldn't go anywhere anyway.  Everyday, it was like another joint went bad.  And, like I said, just to get out of bed & shower was a monmoth task, as you know. 

Probably the hardest thing for me was that I have a sister and two  brothers.  All live, what I call, a charmed life.  I must have been hiding behind the door when the charms were given out..haha.  smilewinkgrin   Anyway, none of them understand, at all.  I try to tell them I don't live, I survive....big difference.  My sister one time told me to quit complaining mad

For the past 20 years, I not only had to take care of my RA but our oldest son, at the age of 11, was diagnosed with Lupus..talk about a sneaky disease.  It came out of nowhere, destroyed his kidneys & has never surfaced again.  Needless to say years of dialysis and 2 transplants later, he is 35 years old & a Paramedic....talk about a fighter....he puts me to shame!  Everyday he now saves lives...what a world.

Anyway, we're all still here for some reason, right? 

I think the strongest thing to fight against any of our ailments is the will & positive thinking.  Like the little train, I think I can, I think I can....somedays we make it up the hill, others we don't, but then the next day there we are huffing away trying again.

I do a lot of breathing exercises, visualize my self on a beach somewhere with blue water, and even repeat a mantra, a zillion times a day....I'll be fine, I'll be fine, I'll be fine. Meditate about a great place you'd like to go...it does help. 

Having someone who understands and won't say "quit complaining" is the best medicine of all...so, I am always here, just to gab about the news, TV, each other's country,etc or , of course, to vent anout the raw deal we got. yeah

Take care hopeful56 and keep in touch.  LindaAnn


hopeful56
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/8/2009 12:52 PM (GMT -7)   
Sometimes the gifts that we think are the smallest turn out to be the mammoth in impact. I like you have family who's lives are so charmed that accepting that mine might not be is so frightening to them that actual have decided that I am faking my illness so as to not have to work. I forgive them I understand my illness and it's devasting impact on our lives is very frightening and all people can handle it. But when I think maybe the Universe is a bit busy and I can slide my vocal hurt by him, I have to tell you I do some fair yelling at them for ignoring my pain, and for not trying to make my life easier in any way the Universe has blessed them because if I know one thing for sure it is that at any opportunity I am given even if it is only in an e-mail I jump at thae chance to help a person in painlaugh or give them hug or whatever I fell committed to do for them. So I often tell myself that is the gift of the curse, the knowing when to help and doing it because in the doing I get so much more then I give. My heart feels useful, I feel connected to the world and it gives all this pain some rational meaning. In all the years I have had this illness, thru the vomitting, hair lose wet beds I have never asked why me, because I always knew why not me? But daily I have asked the Universe please don't let it be for nothing make it about something and I think that is where my lost and lonely comes in. I just can't seem to find my purpose for all this and for most of my life I have known. I have been on my own since I was 13 and everything I have or do not have is result of my own efforts. So when this awful disease hit and took away so much I had to find new reason for the new me. Because mine was so rapid, went thru my whole body head to toe in week, I lost alot of what I thought made who I was. I tried very hard at the beginning to be brave and in fact because they figured even with meds I would not last five years it was easy to be brave. It wasn't until I was still here after five years that I lost my direction and fear took over. I asked myself daily, "if u can live with this much pain, how much does it take to die".When I went into remission I was elated, figured everything would return to normal including my life.It was a terrible shock to learn the damage was permanent and where I was is as far as I will ever go.I knew then full time work,independence and all those judgements were mine for life.I hated being defined by my limitations and hated even more that most well people saw no illness. So I shut the door crawled into bed and began to write my way into company.I have a wonderful 16 daughter who just derserves more motivation then I have offered over the last four years so I have come out of my room to here and in one day it has given more "get up and get going" then i have know for some time. So I will return to what feels loving and keep motivating myself to do one more new event per day.But now on those days when I can only do what is already learned i won't feel so ashamed, because I came here. I don't believe in accidents except the ones where my toes gets stuck and I trip over the shoe and the coffee spills on the dog, I believe the Universe gives u exactly what u need when u need it.I was only required to push the on button and follow the links.So today thanks to ur kind words I am going to try to bake cookies and not fall asleep and burn them. If I am successful not only will I be grateful but my husband and my daughter will be. For the first time in years they will not have to choke down awful cookies and smile telling me there are pretty good.Thank you yeah

pr glo
Regular Member


Date Joined May 2008
Total Posts : 78
   Posted 1/8/2009 2:03 PM (GMT -7)   
Hello StillStanding thank you for the kind words I believe this was fate divine intervention that you and I have similar issues and also that I decided to respond to your post. If you don't mind I might ask you some questions sometime regarding the Alzheimers as I am at my witts end and sometimes just need to ask if what my aunt is doing is normal or not and just someone to talk to who can relate I live in Wethersfield, CT and haven't found anyone who I can talk to and can relate because with Alzheimers until you don't live it sometimes you won't understand. Keep your head up take it one day at time StillStanding some day I know we will all prevail. PR Glo    

StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/8/2009 7:13 PM (GMT -7)   

Hi PR Glo,  Good to hear from you.

Even though I have RA, I always have and still do believe that mental health (Alzheimers) is worse than medical ones.  With medical you have a ton of things to try.  With the Alzheimers, there is nothing.  You watch your loved one change and go into their own world.  There is no pulling them back.  My parents were as different as night & day with the Alzheimers.  My Mom was raised Irish Catholic, so very religious.  She was a sweetie of a person, but with the Alzheimers, she would get angry and WOW, could she swear...if the nuns could have heard her..... She became a non sleeper, walked 18 hrs a day, so we had to place her in a care facility where she was allowed to walk all the time.  My Dad was the most gentle man, very loving.  I was always his little girl.  He was ALWAYS there for me, we were very close. He would never raise his voice or hand to anyone.  With the Alz he became aggressive, accused me of terrible things and was hard to handle.  I found an excellent care facility and so he had to go there.  He died 8 yrs later, but to me the father I knew died the first year.

It is a heartbreaking thing to watch.  Between my sister & our spouses, both were visited 3-4 times a week.

No two people are ever alike.  Each one goes into their own kind of world.  They say aggresive people get calm & calm people get aggressive.  No one can ever predict.

The odd thing is that they both died in just about the same manner.  One day my Mom couldn't walk, the next day she needed oxygen, the next day she was bedridden and couldn't talk or eat, the 4th day just a vegetable and the 5th day she just stopped breathing.  My Dad was okay and then he couldn't get out of bed and just stared into space.  The next morning he also stopped breathing. 

All I could do was hold them both in my arms and say goodbye...I'm so lucky to have been with them both.  I cried for myself because they were gone and smiled for them because their "clouded worlds" were over.

Bottom line is, find a place that you trust, that will love them, keep them safe and clean.  Try to visit as much as possible, talk about the old days even if they don't respond.  Keep familiar things in their room, even if they never look at them.  Play their favorite music and hug them...A LOT & say I Love You...you never really know what they hear & understand.

Do you have a Hospice by you?  They are a wonderful group to look to for advice & help.

I wish I could help more, but I'm afraid that's one disease where we're all just lost about.  Please remember caretakers are more at risk than the patient.  So, take care of yourself. wink Anything else I can do, just let me know. LindaAnn


StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/8/2009 7:25 PM (GMT -7)   

Hi Hopeful56,

Glad to hear my email is of some help to you.

That's the only thing we can do is keep going.  Wash our face, brush our teeth and look in the mirror and say,  today I'm going to do...... and then we try our best!

Do you have any groups by you that do home visits?  Just to have a visitor and talk a little bit during the day would be great.

Here in Arizona, the resources for homebound people or seniors is really incredible.  See if you can find anything that might be helpful.

Just remember, on a day you really can't do anything, don't beat yourself up...just keep trying.

I hope your getting this because when I get 2 messages at a time I don't see how to send my message to each persons' user name.  So all I can do is click on post reply.

Take care, hopeful56, I'm pulling for you... yeah   yeah   yeah


Kangaroo
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 1/9/2009 2:18 AM (GMT -7)   
Dear All
 
My heart goes out as I read these posts, they bring me to tears, not so much because of the  disease we share, but because of the beauty and the strength evident by the concern and support expressed in these heart-felt emails
 
Love and prayers to you all. I think we are blessed and special to be brought to our knees (well figuratively)as we have time to reflect on what life is all about.
 
I sometimes take time to get outside at night alone and soak in the vastness of the universe and breathe in the quietness for a few short minutes.
 
I sometimes take time to study my little herb garden and smile and marvel at their growth-where does it all come from............hey caterpillar when did you arrive?
 
I watch  and marvel at how effortlessly those around me move and I cringe sometimes that their speed may end in disaster- but it doesn't as the task is performed without any pain or effort 
 
 
There is a website that I stumbled upon recently concerning panic. The information is free and comes as I think 8 little helpful notes. There is a book that can be purchased, but the free notes are i think good on their own. To date i have received 7 notes without any concern. Click www.panicportal.com/1.htm and take a look
 
 
StillStanding,
 
If you can get Rituxan without the huge price tag, it is really so worth considering.
See if you can get a script for Famvir 500mg, in the biggest packet you are allowed (30 tablets?) and take 1/2 once a day as a precaution against shingles.
I read about people doing this who experience re-occuring shingles. I am doing this at the moment.
 
Since having my 2nd lot of Rituxin on Dec.1, have been able to lower my prenosone dose from 15mgs per day to 5mgs and still moving terrifically! Over the next 5 weeks I will reduce the dose 1mg per week and hope to maintain my strength and agility wink
 
DebbieLou
 
 
 
 
 
 
 
DebbieLou 
            
DebbieLou


hopeful56
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/9/2009 6:28 AM (GMT -7)   
Stillstanding u are such a doll. Today it is going to be a day of get up and be busy for me thanks to u. I don't know what the busy will be or how much but u have made me feel how much does not matter just doing what I can do each day is all that is required for it to be a successful day. I have not had that kind of encouragement and I must tell u it feels FABULOUS.....So thank you so very much for choosing to be the kind of person who reaches out, and gives back inspite of your own very very difficult days. Today it has made a world of difference for me as I am sure u have done for many others before.You have a great day.

StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/9/2009 7:43 AM (GMT -7)   
Good Morning Everyone,
 
The sun is coming up, so up WE go!
 
Remember hopeful56, do as much as you can, keep moving as you can and, of course, Smile along the way.  You are not alone turn turn turn turn
 
Hi Kangaroo, Thanks for the note about the Rituxin & the Famvir.  I will probably give it a gooooooooo..... I'm so glad to hear how well you are doing.  Getting off that Prednisone is the best thing you can do.  After so many years of it, it caused Cataracts in the back of my eyes (which means too much steroids).  I had surgery on both eyes and now I can see...yea!
Take care & keep in touch. LindaAnn yeah
 

pr glo
Regular Member


Date Joined May 2008
Total Posts : 78
   Posted 1/12/2009 1:49 PM (GMT -7)   
Hello Stillstanding, Thanks for listening and for the kind words. My aunt's son is coming from Texas on Friday 1/16/09 and he will be taking her to Texas on Sunday 1/18/09 at 7:15 in the am because I have been caring for her for 1 year on my own with no help from her 3 grown sons except for one son that throws a few dollars her way every now and again. she is my aunt more like my mom but it's too much for me as she progresses and no matter how I explain to her son's how she is doing it's almost as if they don't want to deal with what's going on or just don't care to deal with it because I have been doing it all always so since I have told the one in texas that I can no longer do it alone she needs to be either in a facility or he needs to take her because she is becoming aggressive and I don't have only me to think about I have 3 children that don't need to deal with the aggression day in and out. I have sooo many emotions about her leaving I feel good I was there for her and did all I could for her but other emotions are killing me will they take good care of her what will become of her I know she will regress just because she is moving to a new state and new place she is used to me regardless if she fights with me sometimes. Bit I feel it's time for her kids to step up to the plate and take care of their mom because she did sooo much for them even as adults and I need to get my Life back somewhat and take care of my kids and husband and take care of myself.  again Thanks for listening. PR Glo 

StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/12/2009 2:05 PM (GMT -7)   
 Dear pr glo, You are definitely making the right decision.  Be glad with the fact that you did so much for her the past year.  It is definitely time for her kids to take charge now.  Don't look back, no regrets, your first priority has to be your family & yourself...definitely your health will improve, as stress is very bad for us all & as you know, Alzheiners is nothing but stress for the caregiver....So, be strong, love your family & yourself & be happy for what you have done for her.   Take care & all my best wishes.  LindaAnn/stillstanding :-) :-) :-) :-)

hopeful56
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/12/2009 4:07 PM (GMT -7)   
PrGlo, I agree with StillStanding you are making the right decision for yourself your aunt and everyone involved. Somewhere inside her she knows her kids have not been there for her and somewhere inside she will know they are now coming through for her. You have given a son and a Mom a chance to heal and have new memories before she goes and that is a wonderful gift. How brave of you to have made what must have been one of the most difficult decisions. Many people are unable to face the kind of decision you have and continue on, which in the end hurts everyone involved. I do know that the memories for the Mom may be lost but they won't be lost on the son. I beleieve that disease is the one of toughest to handle for all families and I think you have done a wonderful job. Rest, remember but no regrets. You have to put yourself top of the list now so you can enjoy your family and them enjoy you. best of luck Pam

StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/12/2009 4:59 PM (GMT -7)   

Hi Hopeful56,

How is your day going?  I've been thinking positive thoughts for you. I hope you got my last message which was:
The sun is coming up, so up WE go!
Remember hopeful56, do as much as you can, keep moving as you can and, of course, Smile along the way.  You are not alone. :-) :-) :-) :-)   Han
g in there! Linda/stillstanding  


Gordon22
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 1/14/2009 5:59 AM (GMT -7)   
What drugs do you use for treatment? My aunt usually orders from Costmeds.com It really help her in treatment

Post Edited (Gordon22) : 11/5/2009 12:41:51 PM (GMT-7)


hopeful56
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/14/2009 6:01 AM (GMT -7)   
Good Morning Stillstanding, It was good to hear from you. yes I did receive your reply and I took your advise. I got up smiling and believeing the day was going to be grand and it was . I was able to do laundry, bake muffins and spend a day with my youngest that was filled with more happy then sad. I was also fortunate to catch a documentary on Sunday about theologian who has done a great deal of research into faith and it was a very uplifting two hours as well as giving me a collective phrase for which I can grasp. Beloved by God before birth after death and inbetween. I guess for me my whole journey has been about finding that unconditional love and I think that it has played a huge part in my illness and its hold on my life. I did not play the victim at the beginning, let's say for the first ten years but I have definitely slipped into that state the last 3-4 years and I can honestly say it was worse then the disease. I guess it has lasted so long I felt left behind by those I loved and therefore made no attempt to catch up or find a new avenue to be included. I simply laid down liteerally and let go. I have spent many many hours seek out the my truth in faith and could not quite find what it was I needed to completely believe forsure and I knew it had to be absolutely without out a doubt forsure. I have read many books probably hundreds but the answer just was not there and quite possible because they were all from the same thread of thought, platform christianity. I could embrass some of it but not all of it I wanted to find an intellectual explanantion for faith that allowed me to emotionally and intellectually find faith.I think this is a journey I have been on over thirty years and what I saw Sunday was the final piece of the puzzle for me and now I am in a faith state that is embraceable as well as workable based on my life experiences. So today this brand new day I am grateful for Jan14/09 another to love my family, hate the cold it is -47 here today which will make me love the -6 that is coming but most of all I am excited for what the day will bring even if that is just a day of rest for I now know there is no unlearned days I just wasn't paying attention to the lesson. Like the old saying goes " there is no teacher until the student is ready". I am excited I am finally ready and more then eager for what is to come becaue I know no matter what it is the universe is working out in my best interest therefore it is all good. Feels great to let go and bury my victim status and once again be apart of an exciting day. I hope your day is wonderful, filled with many blessings and little if no cold...Have a blast...Pam

StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/14/2009 6:33 AM (GMT -7)   
Pam, You sound absolutely great; strong & ready to rejoin the world....I am so happy for you.
 
Keep those positive beliefs & thoughts going.  They will make you a stronger, happier person.
 
As for the weather, I can't even imagine the cold you live in from day to day...today in Arizona, it will be about 75 & sunny...I couldn't survive in your weather....keep looking around the corner for Spring...the rebirth of everything!
 
Take care, as always, thinking positive thoughts for you. yeah
Linda/stillstanding 

hopeful56
New Member


Date Joined Jan 2009
Total Posts : 10
   Posted 1/14/2009 7:24 AM (GMT -7)   
STILLSTANDING, YOU HAVE TO BE KIDDING +75 IN JANUARY YOU ARE LIKE THE WOMEN WHO STANDS IN THE HALL OF THE MATERNITY WARD TELLING US ALL SHE HAD A 15 MINUTE LABOUR AND HER STOMACH IS FLAT, WE THRU DARTS AT HER PICTURE. :-) yeah  BUT I GUESS FOR NOW IT IS JUST LONG UNDERWEAR HOT CHOCOLATE AND ALOT OF CUDDLIN' IN ONE BED AT NIGHT NOW WAIT I NEVER REALIZE THAT BONUS BEFORE OH YEA THAT'S BECAUSE THE KIDS THE DOG AND HUBBY AND ME WERE PRESENT NOT MUCH OF PERK THEN. OH WELL MAYBE ONE DAY IT'LL BE JUST HIM ME AND THE DOG MORE ROOMY THEN BETTER TV VIEW YEP GOTTA KEEP POSITIVE ONE DAY ONE VERY LONG DAY YEP OK BETTER CHANGE THE SUBJECT I AM FEELING DEPRESSED AT THE LENGTH OF THAT POSSIBILTY. BACK TO THE COLD IT SEEMS CHEERY NOW...ANYWAY IT IS WHAT IT IS AND I KNOW FROM SOME WITH OUR DISEASE THIS WEATHER IS HORRIBLE SO MANY CAN'T GET OUT EVEN IF THEY WANT TO. WE DO NOT HAVE A GOOD PROGRAM FOR SHUT INS IN THIS PROVINCE IN FAT ALL WE HAVE IS HANDI-TRANSIT AND ONCE U USE IT U HAVE GIVE UP UR LICENCE TO DRIVE. SO FOR SOME IT IS NOT A GIFT AT ALL. HOMECARE IS NOT A LUXURY HERE IT IS VERY EXPENSIVE AND MOST CAN'T AFFORD IT. SO FOR MANY WITH RA WINTER IS VERY LONG HERE. IT STARTS IN OCT AND GOES UNTIL APRIL SO IT CAN BE VERY TOUGH ON THOSE WHO CANNOT GET OUT ON THEIR OWN. MAYBE ONE DAY OUR GOV'T WILL RECOGNIZE THE BENEFITS TO DAYCARE FOR THE DISABLED AND GET A PROGRAM GOING FOR US WE DON'T HAVE TO SELL OUR HOUSE TO PAY FOR. EVEN  THE BIOLOGICALS ARE NOT COVERED IN THIS PROVINCE SO MANY PEOPLE CANNOT BENEFIT FROM WHAT THEY OFFER. SUCKS BUT TIME I AM HOPEFUL TIME WILL TEACH THE GOV'T PREVENTIVE MEDICINE SAVES MONEY. HAVE A GOOD ONE...

StillStanding
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/14/2009 9:46 AM (GMT -7)   

Hey hopeful56,

Have you ever given any thought of relocating to the USA, especially Arizona.  If for no other reason than the heat & medical help resources....I'm originally from New Jersey, and I thought that was cold...I just don't know how you make it in that fridig weather...I'd lose my mind. 

No dart throwing...please...haha.  In the summer, it sometimes goes as high as 120degrees...then we're not so happy to live here smhair we sweat like crazy & air conditioning bills are outrageous!

I hope your day gets brighter tongue Take care Pam.  Linda/stillstanding

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