I have noticed that having my daughter around (7) I have to put on my
strong face. I realize today, with her being at my parent's, that
I don't allow myself to grieve. At least I haven't properly since
this came on.
I have highs and lows. When I am feeling decent, it is such a
high to be in lowgrade pain. I find myself elated to just not be
miserable.
I feel so guilty that I can't be the mother I once was. It has
been so difficult adjusting to this. I hope it gets better and
easier with time and acceptance.
I accept that I have this, and I am and will fight for my health as
much as possible, but emotionally it gets a lot to carry around by
myself.
How long did it take for you to "adjust" and let go of what you are losing and just become you again, not you with RA?
Honostly, I dont think I have gotten to that point yet because there are still days when I ask myself if maybe I am just imagining that my pain and stilffness is really THAT BAD. I wonder is I was misdiagnosed. I guess you could say I am still in denial.
I have two young kids, ages 6 and 9. I talked to my daughter about what was happening to me when I had the really bad flare in Jan/Feb. Kids know when something is wrong and it can really scare them if they are left to their own imaginations about things. I have had one or two mini meltdowns, esp. before my first dose of MTX (I was so worried about side effects) and I reserved that for my husband. But it seems that all people need to grieve the loss of things that they love, including freedom.
I think it is healthy to get it out and not walk around with that bottled up inside. We are here to listen when you need us but sometimes a good cry is what you need too. I think I was down because I was alone this morning. I usually
have her around in the a.m. to take care of, so that forces me to get
going. I am feeling better now that it is afternoon. I am
sure I will feel considerably better after I get on some
medication. I am med free and I know that doesn't help the pain. You know, I just realized that part of the whole thing for me about thinking about what I used to do is not gonna hit me untill I lose weight. I cant do things that I used to do because I am fat and I used to be skinny which for me means I used to be healthy and energetic, confident and now I am unhealthy and slow and more content to hide in a pair of track pants and a big t-shirt! But what happens when I get skinny again (okay lets not kid ourselves) when I lose enough weight to not fit into the fat category, and I still feel tired and stiff and cant walk etc. ?? I think it might hit me a little bit more then...if the RA doesnt go away with the weight. wow, that was kind of an epiphany for me just now. Okay, now I am a liitle bummed. (sigh)Yes, exactly. We all try to 'make deals' thinking that if this
happens and that happens the RA will go away. Then you realize,
its not, it won't and we still are sick. With luck, therapy helps
and we can conduct ourselves more normally and not be in so much pain
ALL the time and live a more normal existence. Yes I grieve. I was dx a long time ago and I still grieve but it is a different type of grieving than initially. Now it is more a "well crap, RA really changed my career goals, my plan for how I was going to raise my children, and my marital status." RA also changed my retirement plan, my insurance plan and my future. So in comes frustration, so I deal with frustration on a daily basis, some days more than others. I think over time you just grow accustomed to it, maybe adapt a bit but not in the general sense of adapting. It is more like if you lived in a warm climate all your life and then have to live in Alaska or somewhere cold and you adapt but it is a struggle and it really effects your everyday life. I've never have grieved about the fact i have RA along with the limitations that come with it. I'm an older guy and age has put it's own limitations on me. I really believe i have to "accept life on lifes terms" and play the cards that are dealt to me. I watch those who thru accidents or what have you are wheel chair bound and unable to even feed themselves or wash, use the bathroom, or cloth themselves, and i realize how lucky i am to have RD's that can provide me with the meds to keep me mobile but not pain free. I know that as i get older my health will deteriorate until my death. But until then, i'm going to enjoy what i have today along with the many terrible things i could have and don't have. LIFE IS GOOD! DON I second that one, you are not welcome here. How can we get rid of this guy??? Any idea's?? Leave us alone!!! Troll Alert!! I love it Marisa; that's Hilarious!!
I've been dealing with RA for a long time now. In my case I think the word grieve is a little strong....but even to this day I struggle with limitations and disappointment caused by this disease. I do feel like there comes a point where you accept that this is your lot in life....but even once you've done that the boundries or restrictions this disease puts on your life....and the lives of your family is down right upsetting. Hang in there guys. The mental aspects of life with a chronic illnes is at times worse than the physical aspects. That doesn't nessesarilly go away even after years and years with this illness. Just like the pain....some days will be better than others. Eventually you just come to expect it. Some how that does make it a little easier to deal with. I grieve and have been off and on for the last 5yrs. I too miss the things I once was able to do. I cry it out and pull myself up by my boot straps and keep on going. I try not too think on the RA too much. I know first hand how damaging this disease can be. My Mother and My Uncle both suffered with it. The hardest thing was seeing my uncle and mom suffer. But they continued going. My uncle was bed ridden. They dx'd him too late. YET...he taught and preached from his wheel chair and later on from his bed. My mom...she was a fighter. She had a better dx's and faster. She taught school for 42yrs. And when she retired...she took her and 3 girlfriends to Europe. My mother wrote poetry and loved to cook and decorate. They won the battle, even though their bodies decayed. So, that is where I got my Log On Name...WILL WIN 2...from the fact...I have RA...but it won't always have me. I couldn't understand it, until now. It has almost been 6 yrs. I have not fully excepted this disease. My Son is 13yrs old...I hate when I have to tell him I'm tired and hurting. He is my heart...but because he too suffers with a chronic illness, he has been my best buddy. My husband as well...he is a ray of hope when I am about to throw in the towel. There are days like today...I cry from the pain...hard to walk... had trouble brushing my teeth and getting dressed, everything hurts...even my scalp hurts...but I am still here. NO...this is not how I saw my life...BUT...I would never have met all of you if RA hadn't come along. So...NO MATTER HOW MUCH I HATE THIS DISEASE...
I thank GOD everyday for you all...
Roblyn
Thanks for the reply. :)
I haven't grieved but I have cried a couple of times which is saying a
lot for me, I am not...repeat not a crier. Like Crunchy I'm still
somewhat in denial, I go through periods of depression and the periods
of anger and frustration, then back to depression again. So maybe
this is just part of the process you are referring to? The longer
time passes however, the less hope is there. I know there is a
long road ahead trying to find the right combo of drugs that will work
for me, so far, that hasn't happened yet.
You know when you have pain every single day for year and years on end
it works on you, makes you a little crazy I think, that and the lack of
quality sleep. You imagine that you are imagining it or that it really
isn't that bad or that its temporary and you will be able to do the
things you once did.
I keep hoping I was misdiagnosed or that the magic of drugs will
finally begin for me. Lately, that optimism is more and more of a
losing battle and I believe I am coming to accept it, just not
completely, not quite yet.
Like I said in another post here, this is a journey. Thank God we have such good companions here.
It is a journey, and I have to remind myself of that. It is all
that you described and I feel so confused without a
rheumatologist. I am left to my own imagination, and that isn't
always a good thing! ha
Arizona, I was diagnosed last May and I am still grieving Some days I am stronger than others. This morning was
particularly harder than usual. It seems to come in waves.
I am feeling a lot better tonight, mentally, not physically.
I am so greatful to have found this board and learn from all the wisdom and experience. It helps me a lot.
Hmmm...I don't think I've ever grievedIt's been 4 years for me. I still can't get past the moments of what I USED to be able to do and admit that I can't do them anylonger. I wake up some days thinking that hey... I can work maybe I should start looking. Then by noon I am in the bed or just trying to make a cup of soup and find it painful or difficult. Reality sets in and I find that I am still in denial of a lot of things. 1/2 way though making a dinner I get frustrated that I can't finish or with pain so bad that I am pushing to just get through it. I don't have young children (mine are 22 and 24). I couldn't imagine what you are going through with a younger one. Just remember that we are all here for you ... and venting is a GREAT way to rid yourself of pain, mental and physical. Grieving? Yeh,at least once a day I think about what I used to be
and what I used to do. In my mind and in my heart I feel that I
can and should be able to do anything and then reality sets in along
with pain and depression. Kind of a vicious cycle isn't
it? But I do have good days now and then and then I have to
make the decision to clean the house or go out shopping. My dust
bunnies are named eenie, menee, minee and mo. lol.
Take care,
Luv, Justme dostamble();
Being young and feeling like your 90 is tough no matter how you slice
it. I think the key is finally getting to the acceptance phase of
all this. I'm not there yet...I've been going through all the
Kubler-Ross phases but keep jumping back and forth between anger and
depression. Acceptance hasn't really come.
Once that acceptance comes though then you are faced with the daunting
task of adaptation. I keep postponing some of that,like getting a
housekeeper in every once in awhile, etc. Its still part of the
whole denial process. I think I'll be able to handle it in a few
months, of course its actually been YEARS.
We shouldn't feel guilty or bummed about any of this, its natural, its
normal and just part of dealing with a chronic debilitating
disease.
So true. I have a long row to hoe.Look at my sig and take it to heart. One day at a time.
Cope with stuff when you have the strength to and try not to worry too
much otherwise. Now if I could only follow my own advice.
I am definitely grieving!!!I am sad a lot and worried about the future. I feel a little guilty feeling bad because I am , at this time at least, not even close to most of you on the pain scale . I was told by my dr I am in the early stages, have been for years,even though just diagnosed last summer. I worry how this will affect my life. I feel sooo overwhelmed at times. I feel like I should have been on DR Phil because soo much was going on at the time I was diagnosed. I have great support but I often don't have the energy to talk. I also don't want to complain a lot because I don't want to be a downer.
Just because I am not dying of cancer, doesn't mean my experience is
anymore invalid. I appreciate what I have and I don't sit around
feeling sorry for myself. But I woke up one day as a 90 year old
lady. That is a loss and takes adjustment and acceptance. I
really just wanted to hear about how other people have emotionally
adjusted and dealt with it.
I really don't think there is anything wrong with grieving. If
you have always been a ray of sunshine, even when you can't stand, well
that's great for you. You have superior coping skills. I
just feel like my pretending I am fine hasn't been helping me because I
am not facing reality.
I'll be in a year or two, how much the medicine is going to help, how sick
I'm going to get. I have high expectations that it'll all be better soon. And,
as Don said, I've had a really good life. My daughter isn't grown, but she's
not little anymore. Even though I have RA, I'm still so much healthier than
my mother was at this age (she had her first heart attack at 47), and I'm
so much better off than so many of my friends who have other, serious
problems. I miss being able to play music more than anything. And I
miss a good night's sleep. But I don't grieve yet.this product will give you a good night sleep.
www.fomentbag.com
maybe the website is not working now. you can just rembember it and maybe wait the news. i will try to prove it in public soon.
GO AWAY AND DON'T COME BACK....HOW MANY TIMES DO WE HAVE TO SAY IT?? YOU ARE NOT WELCOME HERE.
I was told,last year, that I had lupus as I had a +ANA test. This put me into a tailspin and I felt as if my whole world was falling apart. All of this on top of what my boss was doing to me. So here I was out on disability and not knowing what was going on. I already knew that I had OA in my hip ,knees, and lower back. My GP doc sent me to a neurologist as I was having numbiness and tingling in my left hand and thumb. The neurologist DX me with carpal tunnel. Had to wear this brace at night. To make a long story short, I finally went out on workmen's comp for the carpal tunnel but the ortho doc found the separated cm thumb joint and won't operate without doing both. So after workmen's refuse the operation, I'm sitting home, no way could I work, and didn't know what to do. Enter the lawyer and a new ortho doc. More blood tests, RA doc, hand specialist, and more forms than you can think of.
After several trips to hand doc for injections, etc, and much complaining, which I loath, the ortho doc found out that I had OA in my left shoulder.
The good part was that I didn't have lupus but RA and a very bad torn shoulder with the problem hand and thumb. My mind just raced with all the what if's and this treatment isn't helping. Just as I start getting things under control, my insurance dropped my RA doc. My hand and thumb was getting better and I worked to regain my range of motion in the hand but shoulder was getting worst. Then my left knee started to feel different. The pain was so bad and the leg felt numb. I was to cut out my meds 1 wk before surgery but couldn't as Tylenol did nothing. Then found this wonderful board and all of my new friends.
I do miss some things that I enjoy doing but life has taught me to accept the things that I can't change and to see what is possible and than figure out how to make it happen. I get my blue days, have my good cry and then pick myself up and get on with it. I have learn, from this board, to let my feelings out and to know that I'm not alone in this. I feel as if I have found this terrific family who care about each other.
So to anyone who is reading this, this board is THE BEST!
MarisaI really appreciate all of you sharing your stories. And Marisa,
I am a court reporter and I work for the Industrial Commission taking
testimony in workers' compensation hearings. I understand all too
well how unfair it is on people with real problems and how bad some
insurance and doctors can be. You are inspiring to have gone
through so much and to still remain so positive. I am in the
beginning of my journey, but I feel like I have an advantage getting
feedback from all of you.
alone in the world. No one around me understands how I'm feeling,
just how much pain there is because they only remember the active
person that I was just 6 months ago.
After severe toe pain, I was misdiagnosed with gout four years ago.
The pain and swelling moved to my ankle last fall, being the
stubborn person I am I tried to work through it but there was no
working through it - I was limping.
After going to several other doctors, my aunt (who has had RA for
over 10 years) finally talked me into visiting her rheumotologist. He
was very angry about the misdiagnosis as I am not the typical gout
patient. He extracted fluid from my toe and there were no gout
crystals but there was RA and severe bone loss in my toe.
I'm go from grief to anger to denial. I was remarried last year, I have
2 young daughters who are active with sports, I have a busy career.
And now I don't know if I will have enough energy or stamina to deal
with any of it.
The pain is terrible sometimes, Sunday I could barely get out of bed
- I had pain in my hips, which I hadn't experienced before and my
neck felt like someone had hit me with a baseball bat!
Today is better, my doctor is upping the MTX and I might be able to
start Remicade soon. Thanks for listening - I know that I will lean on
you for support and understanding.
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