The realities of life with sever RA at 27

[breconbcs]

Nightshade, you go a head and vent. As you've already read, many have been and are going through similar.
I have no memories when I was young of my mother "healthy". Just after I was born, she was diagnosed with scleraderma - there are two types: tightening of the skin (external) and drying of the body (internal) which affects circulation - my mother had internal. So from the outside she looked normal and people never understood when we were out why us kids did so much for her, they thought she was lazy or being abusive. In the early stages, it wasn't the disease as much as the meds that caused her problems. She was on experimental meds and on meds for the side affects of those and even more for those side effects. She had always taken at least 8 pills at every meal. Even my earliest memories (sis says they are from when I was about 3), I remember helping her get dressed, bath, etc. She couldn't play with me, couldn't teach me to bake or cook. I had to be oh so careful when I would touch her, if she got a bruise it turned into open gaping (gross!) wound, a few she had skin graph surgery for which never healed right. But it never changed how much I loved her, I always knew how much she loved me and as I grew up I came to be a more understanding person about others and never judge anyone based on what I see and my children are the same.
The one thing I will say, it's not a matter of how much time or what you do with your son - just make it quality time. Even if it's just sitting playing cards, board game or my mom's favourite when her hands worked puzzles. I only ever once saw my mother healthy. They spent a year living in a little town in Tennesse. She was healthy, happy and for the first time I ever remember - my dad was hugging and grossing us (dh and I) out with their closeness. It was like they were newlyweds again.
My dh hurt is back at work, for the first while after he couldn't walk the stores with me, just walking into the store from the car was a painful challenge and he had to use one of those scooter things. People looked at him and comment on how he was just messing around in it and should leave it for someone who needed to use it. I just looked at them and said "First off it's none of your business what's wrong with him unless your going to help pay our medical bills or you have a miracle cure. And I hope and pray that you never get ill or have an injury that puts you in this boat so you can be treated as poorly as you have treated him." Most times that made people shut up and look stupid in the store, cause I wasn't quiet about it.
There area always going to be people who feel they can comment/tease/belittle you for ANY reason they see fit to use. Sadly family is the worst for it - I remember what my MOM's family would say to her, my dad's family was more understanding. Just keep your head up, go about what you have to do for you and your family and ignore them. I know it's hard to do, but I do believe they will get theirs in the end (karma). Always remember you are not RA, you are a person who has it and are fighting it. You will have good and bad days, enjoy the good and get through the bad. Your son will be a better person for having been apart of this journey with you.

 

[Dace]

Nightshade, I am sorry about your progressing RA. My best friend is dealing with the same thing except that hers is upper body.
Her Dr just suggested that she go on permanent disability which was really difficult for my friend to accept, but she finally relented and just recently sent in her paperwork. I think that it will be good for her because it will help relieve some of the financial strain.

I hope that your Doc can find a med that helps you so that you can look forward to better days!

 

[nightshade]

Thank you all for being so kind and understanding!

Mackay when you said about the sheets hurting at night I about cried, when I tell people that they look at me like I am off my rocker. That is one of the reasons I spend a few nights a week in the tub till all hours, it is the only place I can get comfortable and it does not hurt, well at least til I fall asleep and the water gets cold. I can not wait til we get moved because in the new place we have a master bath which is attached to the master bed so when I get stuck in the tub at night I can just throw stuff at hubby til he wakes up to get me out. Instead of screaming my head off and pounding on the wall.

my doc says that she really does not want to put me on methodrexate because of my young age and what it can do to your organs. If this round of meds proves ineffective the next likely step would be the new shots they are advertising. Which everyone I have talked to who has gotten them say that they are a life changing thing. But so far my insurance has been saying they wont cover them. I am trying to get them to come around or see if the company has any programs for such a situation because there is no way I can afford them out of pocket.

I was on celebrex in 2003 with little success at the highest dose rate I could get, as well as 5 others at various rates for the next year.When nothing worked I gave up and took nothing which resulted in at least two days a week were I was not able to get out of the bed in the morning. And sleeping most nights in the bath tub because it was truly the only place my legs did not hurt. Then in October I took a hard fall at the local flea market, I cried the whole way home and agreed to go see my hubby's Dr. Which referred me to my RA Dr and here we are.

I just got pulled off 1000 mg of sulfazine last month do to vomiting and high liver counts. So now I am back on prednisone for the instant kick in the butt it gives on a gradual step down and then next month I switch to 400mg of plaquenil with a 5mg chaser of prednisone. Which I will be grateful if it just takes the edge off so I can walk. I don't care if it hurts but if I can get around to me that is like hitting the lotto. If I can do my chores or work at the new farm for a day with out spending the day after in bed that means the world to me.

Hubby seems to somehow be dealing with it better then I am. we got into a huge argument/ discussion about it last night, because we are so young it terrifies me. We have been together since we were teenagers in high school and have know each other since we were little kids. He says this is an advantage because he knows I was not always like this. And I tell him that is probably someday going to be the problem. That all the things that made him fall in love with me years ago will most likely just be memories, because I already can not do most of them.

I was always a very active outdoorsy person. I jogged, spent all the time I could outside, was a very do it myself kinda girl. When I graduated from high school in 2000 I could bench press my weight and was jogging a mile a day when the weather was okay, I had pain but it was take a few advil and deal with it. And now all of the activities that we so special to us I can no longer do. hiking, swimming the in creek, hunting has become so difficult that it is no longer enjoyable most times, which sucks cause it was great to be able to brag to our friends that I always got the bigger deer. I love to salmon fish but it too is something I can no longer do. Which was really hard to deal with this year when my daddy passed away because that was like our thing to do together every fall. If it was raining I was always out catching frogs or digging wildflowers, now if it rains I am in bed with heat pads and weiner dogs on my legs.

Basicly it just really sucks right now.

 

[VT-Chicklit]

nightshade, Have your doctor keep after the insurance. These meds are very expensive and the insurance will try to get your doctor to perscribe all the cheeper meds before theywill ok these expensive ones. I know this because I went though this with the Embrel. They innitially refused the Embrel because they wanted me to use all the less expensive meds first. I had been suffering for 15 years and had already gone through most of the theripies and was pretty bad. My doctor persisted and pointed out how debilitating the psoriasis was, the insurance finally gave in. You also can apeal any denial that they give you. Be persistant and definately persue this. Don't give up. They will try to keep from spending money on the expensive meds if they can. Keep after them.

 

[freemotion]

Hubby seems to somehow be dealing with it better then I am. we got into a huge argument/ discussion about it last night, because we are so young it terrifies me. We have been together since we were teenagers in high school and have know each other since we were little kids. He says this is an advantage because he knows I was not always like this. And I tell him that is probably someday going to be the problem. That all the things that made him fall in love with me years ago will most likely just be memories, because I already can not do most of them.

Just a thought, mostly because I am much older than you are! I know I can't fathom what you are going through, but one thing I know for sure from your comments.....sounds like your hubby is a major keeper. Let him love you for who you are in your heart. Not for your athletic endeavors. That is what we all really want, isn't it? A spouse who loves us for us, and will support us "in sickness and in health."

You are in mourning for your losses, and need support for that. He will have his struggles with that, too, but not the same way you do, or at the same times you do. Good thing, too. Life is ROUGH when both are depressed at the same time!

So let him love you, and don't try to tell him whether he should or not. I said this to a wonderful lady many years ago who was pushing me away to "protect me" from her....her own twisted guilt after being molested.....and I finally said, very firmly, "I am an adult and I will choose who I will have as my friends. You don't have the right to tell me how I should feel, and I love you. So there!" Stopped her cold. She also began trusting in me and that was one more step in her healing. So let him love you, and give him the dignity of making that decision. It will help you heal, and help him, too.

 

[Mackay]

Nightshade, I was in my early 40's when I got hit and I thought I was way too young at that time. The fact of the matter is that there is no good age to get RA. Life always calls, always beckons for those who love living.

I really hope you find your way to some natural help. It is possible and it is real. I have been a nurse for over 26 years and I have never seen anyone get better from the drugs they give. I have seen remission but along with that come all the god awful side effects, weight gain, frail bones, liver and kidney issues.

My aunt had it real bad. I tried to get her to get help. Since she lives in Florida there are some of the best naturapaths in the country there but she would not let go of the fears that the medical community projects.

I still carry the propensity for RA. If I get way to far out in Left field in diet and fortifying my immune system I can head right back into it. I thank god for CMO every day. In fact today I just ran a bottle of it to a nurse co-worker who has developed the same symptoms I had so long ago. They have her on a ton of steroids and its not even making a dent.

Dr Donsbach has had a lot of success with RA in his clinic in Mexico which I think is now closed. But I didn't go there. I just read his books and did what he said and it worked.

This is one of the new products he recommends. Like I said, the CMO I used is no longer carried buy the company he use to own.

This is the closest thing I can find to what I took and is one of his products also. It has condrontin and other stuff to rebuild joints that I didn't need cause I had no joint deterioration, only inflammation. I like that it has niacin in it cause that will help open the vascularity to get the medicine in to hard to get to places. But its got the CMO! and likely as good as the first product he made that I used that is no longer available.
http://www.letstalkhealth.com/Energy-Food-For-Joints-p/132.htm

This product may be helpful. I have read studies on all the ingredients and it truly does work for some people.
http://www.letstalkhealth.com/RE-LEV-IT-p/429.htm

My cousin has arthritis, RA and she uses cats claw and has for many years. She is a massage therapist, so you know its gotta work. Unlike the CMO which I had to take for only a short time, she has to take it frequently, but she is most satisfied. Just think of how much you have to use your body, your muscles, all of your joints, to do massage!

Here is a very helpful book. It could be a key to your cure.
only $1.75! a real DOAL! (deal of a lifetime)
http://www.amazon.com/DONSBACH-TELL...r_1_23?ie=UTF8&s=books&qid=1238971066&sr=1-23

There are so many products out there that help all the different kinds of arthritis. Unlike drugs they are like attacking with interlocking puzzle pieces. You have to find the right alternative therapy that biochemically and biodynamically just fits your particular malfunction and it may take some experimenting. With drugs its like attacking with a bomb, and everything gets damaged in its wake and you never really get better.

 

[everyonesmomtwo]

Nightshade first let me tell you that you need to vent. Whether you do it here or with other friends that will listen it is important that you have a good support group.
Believe me I know what you are going through. At 47 I have been living on SSI disablility for osteoarthritis and MS. I was diagnosed with OA at 18. I have the juvenal form and so do all of my children. My 13 year old daughter was diagnosed at 18 months. Her doctor couldn't believe that someone that young could have arthrities. He swore she must have cancer and was totally shocked when the CT scans came back. We all have the same problem. You can't see whats wrong and people stare and make rude commintes when I pull into that handicapp space especially if I'm having a "good" day and not using my electric scooter. HA HA.
I take so many pills for pain and muscle spasm I make sounds when I walk and all they do is keep it so I don't blow my brains out. Nothing takes the pain away completly and people don't understand unless they are in your shoes. "your taking pain pills how come.." fill in the blank. One of my meds is a thousand dollars a month because I have to take name brand and there is a generic avalable, it doesn't work.
Nightshade don't give up, science is always making new advacement. If you can put in a hot tub that is about the only thing that gives me any relief (unless my MS has flared up ha ha) When people give you rude comments remember that they are just ignorarnt people. You need to set a good example for your child. I know its hard but try and keep moving. Change doctors if one won't listen to you. Use a cane, yes it's hard but it makes a difference, it also makes a difference in peoples attitudes, "maybe there is something there" I know it's hard to give up that part of your independece, so just use the cane when your out and not at home. That's what I do. Course it's caused me to fall and break bones to which has caused me to have more arthrities. Do you see the circle I've set up for myself? It sucks, lifes not fair. So come here vent, scream, cry and know you have friends that are here for you. And have walked or are walking that same #$*## road.
Ruth

 

[Henrietta23]

I don't have much to offer other than cyber hugs, an "ear" and a "shoulder". I agree people can be idiots. My own 81 year old father, who is severly asthmatic and had major heart surgery three years ago, hates to use his handicapped parking tag because of the dirty looks he gets because he can actually walk into a store. If he had to walk across the parking lot he'd be so winded he'd have to sit and rest. Vent away anytime you feel the need.

 

[nightshade]

Went to the laundry mat today with a huge homemade quilt that the goat had an accident on (long story) and thank god my little guy was out of school. He helped so much got my cane when I dropped it and it skipped across the side walk tried to get the door open, he was a real little trooper. Just ignored the guy sitting right inside the doors it took us 10 mins to opens nasty comments and helped mommy right along. Today really confermend that people are jerks but atleast my little guy is so far okay with it.

 

[miss_thenorth]

And that's the main thing--who cares what other ppl think--the ppl who are close to you love you unconditionally--cane or not.