Hope and Life with Rheumatoid Arthritis

I can identify with every thing you've said. Very sorry to hear abot your aunt. I know it must be so emotionally stressful. and emotional stress can really make this disease much much worse to take.

I had a bad day today too, after almost a month of managable pain and relative activity, today I just lay in bed. I guess the last two days attending my best friend's wedding in a different town was too much for my body. I so know what you mean when you say just the hope for one pain-free day helps a lot!

 

Don't give up! This too shall pass! Get the rest you need during you'r stay at your mother's house. Believe that this is only a temporary set back, you will get better!

 

And, thank you for sharing this - you have made me hope again too, and made my bad day much more bearable!

 

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I'm sorry to hear about all the pain you've been in. I also have had a rough time since this past March. It is amazing the difference in my mood on days when I am in pain and on days when I'm pain-free. After a few months of pain, I got in a huge rut of depressing thoughts and a boring life of staying home and not being able to see friends. Being a 20 year-old college student, this was not easy. It is not easy. I can't even imagine having kids with arthritis. I hope that you are on your way to a long stretch of pain-free days. It sounds like you need a break. When I am in so much pain that I can't even think, I listen to music that I like to sing to, and I sing at the top of my lungs. Maybe it's the oxygen or maybe it's just that I forget about the pain, but it really works. Try it. :) Feel better!

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Dear sweet Holly

 

My heart and prayers go out to you.

 

It is frightening when you body seems to be deteriorating --

and you wonder ......

when will it plateau ?

when will it begin to regenerate??

 

And regenerate it will!!

Our bodies are constantly removing old worn out cells

and replacing them with brand new ones!!!

Fantastic!!!

 

I have been in your position

and everything from dressing to toileting to eating,

to not being strong enough to switch on a light or get the ink to flow out of a pen

 

When the disease had a big hold on me

severe diarrhoea forced me to wear a nappy--just awlful

my ESR was a whopping 1,500 !!!

 

Yet that is history

I am now looking for work

I feel strong and my tiredness is not so bad

My ESR is down to 7!!!

 

 

I have experimented with food

 

FOOD IS A BIG THING WITH RHEUMATOID!!!

 

 

Holly, try eating a diet of

white rice,

very lean meat (NO FAT) beef, chicken breasts or tenderloins, all fish 

and a juice of 3 celery sticks including the leaves,  1 lg. carrot, 1apple and a slice of fresh ginger the size of a large grape (or a bit more if you can handle it ).

 

Veges that help are pumkin, carrot, sweet potato, brocolli, brussel sprouts, lettuce, cucumber

 

Beans-canned bollotti, red lentils, canneloni are great!!

Get the ones with just beans salt and water

Add to lean mince and/or rice with olive oil and spinach -good stuff!!

 

Cold press olive oil- 1/2 cup a day- use as a sauce on everything!

 

 

 

Breakfast- white rice with  canned tuna and greens

 

Lunch- celery, carrot apple, ginger juice

          rice crackers- (get olly the ones with rice, salt and oil only)

          advocado

 

Dinner- lean meat, olive oil and any of the above veges.

 

 

               DON'T EAT THE FOLLOWING-

Stay away from preserves, artificial colours and flavours

I was so surprised that 1/2 an hr, after having an orange jelly lolly (an orange snake )

I couldn't walk- yet before the snake, I was very mobile!!

 

Don't eat any of the deadly nightshade family-

                                                            potato, tomato, capsicum zuchinni,onions

 

Also don't go near any fat 

only good oils- fish, olive cold press

 

Keep away from sugar- very bad

 

Chocolate, coffee and tea are no-nos, drink lots of filtered water instead

 

Milk ,cheese, yoguart, butter, margarine are on the band list-

take a supplement of calcium and magnesium 

 

and no wheat ie, no bread, pasta- only rice.

I make a big pot of rice-just boil up the water.

Add to a 4L microwave safe bowl(I use corningware) 2''(thumb depth) depth of rice ,the boiling is 1cm(2 fingernails) above the rice. put the lid on and cook on high for 5 minutes.Let it stand for 10 mins. It is then ready to use. Stir through with a fork to fluff it up . Store leftover in the fridge, ready for breakfast etc. for the next 3-4 days.

 

              Exersise is also important!!

 Hold you stomach in and lift those legs while lying in bed

Twist your waist and just generally wriggle or vibrate.

Movement creates endorphines that make us feel good

 

And a another simple strange exersise that works!! try the following........

HAVE SOMEONE TAP YOUR BACKBONE STARTING FROM THE BASE OF YOUR NECK AND GOING ALL THE WAY DOWN TO YOUR TAILBONE

This is not a strong tap, but they must tap every position say 10 taps, and they must always tap down- to drain the stiffness (think of squeezing a tube of toothpaste- one direction only). You we be pleasantly surprised how this frees up your body

 

 

           Lots of New Medicines!!

There have been alot of developments on the medicine front- Enbrel. Hurmira, Mabthera that work really!!!

I am sure the pharmacy companies will keep on coming up with more drugs!!

 

I am currently on pregnosone 10mgs. per day

Losec to keep the stomach ulcers at bay,and to help absorb my food twice a day

This week I changed Mobic to ordinary panadol

Calcium and magnesium to help with the problem of the pregnosone

Fish oil, olive oil

Claratyne one a day, which is an anti histamine that helps with allegies-                             which we have alot of if we have rheumatoid

and a good multi vitamin-Swss

 

 

 

I firmly believe staying positive  is our strength!!!!

Yes!!!There is hope!!!

 

 

Love to you

You are a tower of strenght to all of us

 

God bless you Holly!!!

 

Debbie

 

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I am 36 and I have been living w/ RA for about 5 years now, maybe longer.  The flare ups SCARE me to death! They come on so fast and soooo strong! I have had a rough couple of weeks myself! I feel like this year has been the worst so far! I hear people say that their RA goes into Remission, I have never had that pleasure!!!! and BOY do I pray for it everyday! I pray every night that I wont have horrible pain in the morning!!! But that never happens! I try to remain as positive as possible! But, sometimes thats impossible! I am so tired of taking medicine all the time!!! Just to survive! I am tired of people not understanding how I feel... So you are not alone! It's very frustrating!!! VERY! I want my life back! I often wonder how I will be in 10 years??? All we can do is make the BEST of it! Try not to let it get the BEST of us!!! No matter what! Hang in there and know there are others out there just like you!

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I was very taken aback by this message. I was looking for hope but not in a very hopeful way.  I haven't signed up for anything and just have been reading other responses, but actually this one motivatedme to respond. Hollybgroovin, since I'm new at this I haven't  followed your posts so I don't know your age, your circumstances, your location etc.  I see you are married but that's about it.

 

Here is briefly my story. I am 50 years old. Oddly enough, I was the director of the Arthritis Foundation, Southwestern Ohio Chapter, for 20 years. Knew all the ends and outs. 

 

Well,aboutten years ago my Mom had a stroke and soon after my Dad passed away. I have had back problems forever. I have severe scoliosis but no Doc has ever said I might want to look into surgery before I get older. So my back was always the center of my aches and pains. Both parents passed away and BOOM (is stress a factor), I started having problems with my hips.  Suddenly, I was told I have RA. Ok. I need a bilateral hip replacement, Ok. Done. 6 months later, your kneesare shot. Plus, if you don't do something with your back walking will just get worse. What is it my back, my knees, my hips?   Just cut me off from my neck down.  Well, after going to a spine specialist and a surgeon, a) the knees are cartiledge (sp) on cartledge; the back is continueing to curve and will be pressing on myorgans. Maybe a few cortisone shots into my lower vertabrae, L14 & L15, before we consider a spinal fusion, did I mentionI was 50? I older youget, the less positive the reaction. Then to top all that off, my shoulders have given out, so anytime I'm ready they need replaced.

 

Good times for all.  However, my oldest son is going to his first year of college at Indiana University next week. Gotta grin and bear it for that, certainly cuz my xhusband is healthy and puts on a good show. Plus I have a 15 year old and a new husband, or relatively new, 7 years.

 

Ok, deal with  it. Wish I had my Mom and Dad to talk to for advice or a sibling or anybody tha t understands.

 

Ok, things are super!. My husband is there for me for my bilateral hip surgery and once my oldest is off for school, planning the knee surgery. Ok, I've come to terms.

 

Did I  mention my husband has Crohns which wrecks havoc with his system.  During all this, he is having some blood in his urine.  What else could go wrong, right? God?

 

Another Drs. appt. They tell us that he has  a rare kidney disease that is progressing very quickly. His kidney is at 40%  functioning and w/i the next 6-9 months will probably go into kidney failure so we might need dialysis or a kidney donation.

 

So when I read your blog, I didn't feel so alone. Much luck  to you. I hope things pick up but thanks for the inspiration.

 

 

 

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thank you so much for what you wrote, it really speaks to me and the situation I am in.  I hate being so young and feeling so old and I know exactly what you mean by the pain swooping in and how it just completely consumes you.  I try to be tough but its freaking hard you know?  I worry my husband will get fed up with having to help me brush my hair and put on my deoderant during flare ups, not to mention how he stays up and holds my hand when I spend all night crying in pain.  RA really sucks but your article deffinitely made me feel way less alone and it is a relief to finally find someone on here who isn't a middle-aged mom or whatever.  I start grad school next fall hopefully and I have so much living to do!

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