I've seen you on Texas forum, Barb, and never knew. I'm so sorry. Venting is good; you really need to be able to talk about how you feel, sometimes.

I would let those close to you know exactly how you feel; they need to know. It is not a sign of weakness, you know :-) Just a : this is how it is.

Barb, arthritis is challenging and can become limiting and it is frustrating not to be able to do as much as we once did. It is essential to get enough rest, not to push yourself into fatigue, and to explain to other people it has nothing to do with them but that you need to limit your energy and stay in focus to reach positive objectives. It's frustrating to want to do something but not have the endurance or energy to realize an objective. It is also difficult to explain to others who have no comprehension of how you are feeling. It helps to focus on the things that are still possible, accomplish one thing at a time, and set limits. If you aren't feeling well, acknowledge it, explain what you are feeling to those who live with you and they will know better how they can be supportive and comforting. You are not alone.. but each individual deserves to be able to make the best of life. You posted a photo of your garden on another forum and I gave you what I hope was a positive reinforcing response. You have a beautiful swimming pool and back yard. You deserve to enjoy it. EP

Barb I could swear I wrote that message. I have been disabled for so long (not born this way) and lived in a snake pit of depression for what seemed forever. It has taken me a very long time, however, I have come to the conclusion that nobody can feel your pain, no matter,what they think they understand, only to find out that it is impossible for anyone to feel anothers pain. I can appreciate the information you were given, however, I hope you have better luck than I did. I was an extremely independent person and very active in business, community work and loved people and life in general. Then suddenly things changed. I became ill, and for the first few years, people listened when I tried to explain why I could no longer do the things I used to. And as time went by, all the people that I helped in the past and I thought I had made friends with so many. Some as long as 50 years. Then they started to avoid me as they wanted to do things and not hurt me by asking me to join them only to have me say thank you, I will take a rain check for another time. I used to entertain and loved every minute of it. Now that I can no long reciprocate, the invitations have stopped completely. This caused me great pain as I thought that I had so many friends when in truth I found out that every last one of them was not more than an acquaintance. This did not happen over night, it was a gradual. Then one day, one of these so called "friends" told me that people don't like to be around people when everything seems to go wrong in their life. I cried for weeks. Then I came to realize that they all felt the same only didn't have the guts to say so. I almost slipped back into that dark pit and then I decided that either I was going to put an end to all the physical and mental pain or I was going to challenge myself to do things I had never done in my life. I didn't tell anyone except my DH. He has been my care giver for a long time and I thank G-d for him every day. He is not young anymore and has his own problems. It hurts to see him feeling badly because I am in such pain and there is not a single thing he can do to change a thing and I feel badly that I am unable to be of help to him as he still is to me. It was then that I decided to start a very small flower garden. When I told my DH what I wanted to do, he thought I had lost all my marbles. Me, who could never even keep a house plant alive was going to make a small garden. After each surgery, I would return home with 12 to 15 plants and within 18 months I managed to kill them all. I spend the entire winter on the Internet in different forums. I ask a million questions and I was so lucky that there were such kind people out there that shared the knowledge and experience with me. I was used to be very medthodical, I went about starting my garden by getting some graff paper and designed what I thought would look pretty, I chose the colour scheme, and layed all my plans out, drawing areas to scale so that I could leave enough space should the plants grow. Everything I did took an eternity. E-mails that used to take me 10 to 15 minutes to write up and send out, now takes me more than 3 hours to write. Like you, I am unable to stay in any one position for very long. That first year I made so many mistakes, but I decided that this garden would be my salvation and I just was not quite ready to give up my life (such as it was). I met many people in the forums and for about six months they would write very often and then the e-mails came farther and farther apart. It was then that I finally realized that I could kid myself no longer. Nobody wants to hear about your pain and problems for too long. Even my super husband loses his cool with me sometimes and that scares me. I have been put on so many different medications and now in addition to the horrific pain I suffered before (and still suffer), the medications have added their own side bad effects. Every day I can do less and less.
By the way it was a few years ago that I got the idea for this forum. "The accessable forum" I put my whole heart into this forum. There were some who sent letter asking me questions and I never knew the answers, but I wasn't going to let anything stand in my way. For each e-mail I received from family members asking for help for their loved ones who had their own problems, I would spend the next few days searching for the answers. I even wrote to other forums inviting anyone who had any ideas to help me find the answers, until I was able to reply to every e-mail I received and tried to encourage whoever it was that wrote. It was no easy task I had set for myself, and there were several who wrote very mean things, like "who appointed you to welcome all the newcomers" and "do you really think you own this forum". I must admit it caused me great pain. But then I had suffered so much worse before that I wasn't going to let a few stupid people, run me off course. And I can tell you that there were many that tried hard. I am so happy when I see that there are so many still using this forum and that I stuck to my guns. About my small garden, would you believe I planted some roses last year. Take it easy, do only what you are able to and not more. Don't let anyone discourage you. I guess they have problems of their own which they are unable to deal with and so they too are venting. Don't take it personal, some are just thoughtless.
Keep your chin up and be strong. The alternative is awful, take my word for it. I wish you much GOOG LUCK !!!
Punky.

Barb, my advice to you is to go to a few Dr's, get a few opinions, have them make note of everything. Be sure to detail to them what you wrote here and type yourself up a health database in Word that lists Dr appts, main Dr's, Dr's consulted, medications, past medications (even if you've tried them & couldn't tolerate) any tests, as well as a detailed pain history - what brings it on, reaction to meds, side effects, and if you can, include pictures. You say arthritis in your hands- see if you can find some medical pics and edit them with a detailed legand like my {{gwi:338095}} & {{gwi:338096}}. Notice on the pics the marks are different colors, each color represents a different pain sensation (throbbing, stabbing, numbness). I have found that the Dr's I go to appreciate my pics & my detailed pain history chart.

I just had my 2nd court hearing Nov 3rd. Yesterday I posted on another post in the health forum (link below). I hope that my fight will be over. One thing I had going for me was a few years back I had my neuro type a letter about how long I can sit or drive in a car. My Ex & I were arguing over where half-way was for a drop off point for my son. Even after mapping it, he still thought that since he couldn't take a direct route to get there that his time factored in. Anyway, at my last hearing, that letter along with a few others about my limitations may have gotten me disability since that vocational expert "found" jobs for me, like a bank teller,(ruled out due to medications) but since I couldn't walk fast, sit long, bend, those jobs were ruled out. He'd then suggest another list, which then got cut down from letter 2. Each letter's limitations were read, until we got to the last one. It was suggested I could be an "information clerk" (whatever that is) or an "order clerk". Information clerk was ruled out due to my divorce attorney asking where the jobs were located (he really rocked!), since they were out of my driving range, that went. The order clerk went after my attorney asked specifically what kind of store. He then ruled that out due to medications, & limitations. I'll say one thing, my disability attorney going on maternity leave might have been the best thing to happen to me. It just happened that my divorce attorney took on her work load for letters A through K. Since I know he can argue cases (haven't lost a case against the Ex) I wasn't worried going in there this time. I thanked him on the way out & told him how much better he was than her, he said she's a good attorney altho I haven't seen that.

Punky, (((HUGS))) man, I could have written that post! I know all too well about emailing people, even people who also suffer from pain- they don't want to hear it either. I got an email from one "friend" who also suffers from pain. We used to vent to each other, I enjoyed chatting & emailing with her. One day, I made a post at another place about new problems (colon / stomach related) I was having. No one replied- I was shocked. They supposedly were my "friends" it was a rough time, I was at that place where you wonder why you stick around. We chatted & I mentioned no one replying, she then hit me with a wake up call, pretty much what you said. I don't remember if she even mentioned my new problems in that email, but I made a vow not to update everyone about my health. If someone emails asking, I'll say there is no change, or something to that effect but won;t get into it.

I don't think anyone could prepare us for what this does to a marriage. This has to be the worst year for us, the 6 years we've been togather. He used to be patient & loving, now he's moody & loses his temper & throws things. Recently a "paver" came flying 2 ft to my right. It has been the worst year for my "dark cloud", I can't wait until 2005. Every time I turn around something else happens. I'm dealing with failed back surgery (fused Nov 2003), a daughter with problems in school due to ODD (funny, she's fine home), an Ex that blames me for her problems, a son who's father I fought & won for him to go to a really good art college, dropping out due to depression, my son then moving to CA to get away from it & having to move back for our next court battle against his "father" to enforce an order that he finish paying the loan he was ordered to pay. Unfortunatly he beat us to filing, & now my son is faced with the realization that his "father" cares more about $5,000 then him. Add to this my back problems got worse after surgery; all the 2nd opinions I went to said the fusion is fine, and my most recent colon / bowel / stomach problems. How much can a person take?

I know there are people in much worse shape than me, but even knowing that doesn't help when hit with other things popping up that I don't need.

I just want to be able to do things again, to go to work & have money to spend. I want to be able to go on an airplane & go on vacation. I want to take my daughter to the beach & swim in the ocean without worrying about the tide, or someone knocking into me. I want to take her to Great Adventure & ride a roller-coaster again. Heck, I'd be happy to walk the park! lol Who has $40 to rent a scooter? I'd love to bake & sew again & ride the Harley we bought right before I stopped working.

Thankfully, there is gardening. The one place I can go & take my frustrations out on the dirt or prune the perennials down, or even rip them out when they get invasive. I save jobs like this for those bad mood days. I now pot up any invasive plants I pull out & will start selling them in the spring. I purchased a shelf / greenhouse from BJ's wholesale club & have it set up inside. I started trying to grow clematis from seed, it's actually coming up (let's hope it's not weeds). I also started a few rose cuttings, knock on wood, but so far they aren't dying- woohoo! I've been trying to root roses for years with no luck. I just harvested rose hips last weekend & will try to grow from seed. Hopefully, this will give me something to do in the winter months. This is the greenhouse I have if anyone is interested. I'm sure it can be found cheaper, I paid $25 for it. Best price I could find was $50, oh well, not allowed to mention the site here. On preview of post, it said this vendor not allowed. If anyone wants the link, email me. It is $49.99 with $2.95 shipping. I found a few on Ebay, but shipping kills you.

You know, I'd really like to see a venting forum.

Here is a link that might be useful: My responce on another post.

I've been away from GardenWeb for awhile and like some of you, I've seen Barb's posting and garden on other forum.

I have post polio and use a power wheelchair for mobility. I too have pains on my joints when over use my muscles but the pain is nothing comparing to what you're going through. My doc said that it's because I had them for so long and is used to it. Truthfully, I don't normally notice the pain but it's there.

In my case, I had found that my families (sisters, brothers and parents), whom I've lived with for 40 yrs. with my disability, are the hardest people to make them understand what I can do or cannot do or even what I need help with and what I don't. If I try to explain to them so they can see my disabilities, they'd say that I'm whining. If I don't say anything, then, they'd blame me for not explaining my needs. I'm not sure if they are ignorant or what. They seem to always think what my needs are and get them wrong 85% of the time. After 40 yrs. of my life with them, you know what?, I gave up, moved out and have been living happily ever after.

I now have an independent life which is something that my family had always thought it was impossible with me. I got myself a decent job, make fair money and got me a house with a nice yard to do gardening as much as my heart's content with.

I too find gardening very soothing and comforting. I do most planting in pots so I can keep it on my patio area for watering and caring. I would like to turn my back yard into a garden that would have pavements for wheelchair accessibility. I want to do away with grass lawn which doesn't serve me much purpose. It's going to be a long process since I'd be doing as much as financially is allowed but I'd be so rewarding while I'm doing it and once it is completed.

Barb, I hope gardening will keep your mind off the pain and comfort you as it has been with me. I hope that you'll find understanding from your husband. I've always look at it this way, that having a disability is actually a blessing. In time, you will see that those that find friendship in you are the ones that actually like you and love you for the person that is within you. As in my case, my friends see my relationships beyond my wheelchair and disabilities and that is truly a blessing.

Having a disability will also make you strong and bold, patience and appreciative of the smallest thing you can do in every day chores. In these respects, you'll be burst with joy in what you can do rather than being upset of what you cannot do. I hope that you don't see your disability as an obstacle but rather a challenge, a challenge to accomplish your creation of a beautiful garden.

Good Luck Barb and feel free to "vent out" whenever you need to. You're not alone when you're on this forum.

My fiance has RA. For years we did the Mayo Clinic and all the drugs, hard thing was no insurance so we were forced to by from Mexico. We started doing some research on RA and found this website www.roadback.org They recommend taking antibiotics for RA. There are also some great books recomended on the subject. I actually looked up a lady on the internet that was in one of the books. She was in a wheelchair until she started on the anti biotic therapy. She is no longer in a wheelchair. We have started this therapy, it is another one that could take 6 months to a year to start working, but anything is worth it. He still takes his regular meds, which we have been able to get health insurance now, cost is expensive, $2000.00 a month! He has only been taking the antibiotics for about 2 months now, so still too early to tell. Keeping our fingers crossed. Another place to get some of the glucosamine/chondroiton is a website called puritans pride. You buy one, get two free. Not a bad deal. We also love to garden, he does all the hardscape, and I get to do all the flowers and veggies! Plus, we own an irrigation business. Good luck to all of you. Lori

Hello Friends:

I am so very glad to meet you all! I did not know this forum even existed on here! I have been over at Garden Junk for a couple of years now and someone over there was kind enough to add this 'link' in their post, what a Blessing!

If you click on my My Page, you can get a good picture of my situation and I have to tell you, I feel deeply for all of you! There are two main things that have bothered me ever since (way back when it seems like now!) diagnosed with the Osteoarthritis in my knee:

1. Other people cannot see the what is causing you pain, there is no surface bleeding, scabbing or visual signal of what is actually going on inside of your body. So many times, even now, people will say, "Well you are looking so good!" So what? Just because I choose to 'slap' on a little make-up and do my hair means I am not in pain 24-7? Should I go around looking disheveled and haggered so people will 'believe' I have a chronic condition?

2. I had my knee replaced when I was 36 and at both that time and even now, most of the information regarding joint replacements is aimed at a very select group of citizens, generally 50+. There is little information out there about how to cope and live with a replacement and the impact it will have on a relatively young family. Our son was only 2 when I had my replacement done and most of the things I have had to go through have been 'trial and error'.

My situation now is not the Arthritis, unfortunately it is more complicated then that so it is even more difficult for people to understand what I am going through! I fought for and won CPP (Canada Pension Plan) Disability Benefits a couple of years ago and had to come to the conclusion that I do not give a d&*^ what others think, my loving family and good/true friends know how my life is. That I have 'good' days and 'bad' days, that sometimes I just cannot say 'yes' to everything. I will not say it has not been a loooong road because it has been! Last summer was a 'write off' for me, we were and still are struggling financially (having only one income for over a year will do that!), I did not know how to deal with my pain, the guilt of not being able to work, the medications I have to take that would make me in some peoples eyes an 'addict', but I have learned to take it 'one-day-at-a-time', keep my faith strong and remember that there are always, always, others out there worse off then I!

Thank you for this space, I will now get off my 'soap box' and let others speak!

Della :)

I learned a lot about pain from my mom when she fell recently at the gym and strained her back. Mostly I learned that I'm too stubborn to admit something hurts enough to voice my pain. It doesn't mean it doesn't hurt, but somehow I got it into my head that if the pain is caused by my own excessive activity, it doesn't count. If the pain only hurts briefly, no matter how intensely, it doesn't count. If I can still use whatever hurts, no matter how badly it hurts, it doesn't count. Stooopid, stooopid, stooopid!!!!

I also react to both acute and chronic pain differently than she does. I go curl up in a warm bed with a cat or three and go to sleep for as long as I can get away with it. She tries to do stuff and carries on and whimpers. I just stay in my bed until I have to pee, go to the bathroom, and go back to bed. I can't persuade her that sleeping is a good way to cope with pain and/or illness.

Part of it is from my time in the military, I know, where I was either hiding pain because I knew I'd get in trouble if I was caught injured, or because the docs would basically just say: "Take a motrin and have someone call me when you are dead." Part of it is from taking ballet classes for long enough to learn to dance through pain, and to accept pain as a way of life (or well, at least until I realized my motrin/ben-gay bill was bigger than my food bill, and I ate like a horse just to keep weight ON). And part of it's because I have a stoopid/stubborn streak a mile wide.

But bottom line is that I learned that everyone perceives and deals with pain differently, and as much as I might WANT my mom to deal with pain the way I do, it ain't gonna happen, so why get irritated about it?

well, my arthritis, in addition to enlarging the joints, has attacked the fluid pockets that enable the joints to move,large hook like places have developed on the palms of my hands, and soles of my feet. and, my husband has cancer of the brain, slowly loosing his memory--sometimes not so slow.but--i will garden, as long as i can crawl. my prayer to GOD each day, is to allow me to use my hands as long as i have left. so far, HE has. whats with the using a blank instead of printing GOD?(above letter).My children all have their own lives, even if i did get in trouble with them for driving myself to the emergency room this week after a bad fall.it was only stiches! best to all.

I know just how you feel. The discrimination against invisible disabilities is everywhere. I have arthritis, I have knees that don't work right, there is something wrong with my shoulder joints, I could go on, but I won't. I get a pension from the VA and I have a parttime job and a great DH.

Ljrmiller, your Mom sounds like me - a Type A personality. We just can't lay down, but believe me, she will if it's bad enough. You do what you have to to feel better. I laughed about the ballet classes. I swear those backbends the one teacher had us do was the start to my degenerative discs! Hang in there!

Ceresone, God bless you and your husband and I'll say a prayer for everyone here tonight!

OMG, Barb! That so could have been my diary! I've been with GW for a long time now and never knew this exhisted. Finally, others that understand. I do agree that others can't understand and have little tolerance for hearing about our aches and pains and such, as well. I get tired of hearing myself!

I finally learned to keep my mouth shut most of the time and just do what I can. If this upsets family members and/or others---oh well. I have to take care of me first. Because ultimately; they won't. Granted most of time I wind up doing 'too much' and paying dearly for it; but I'm not ready to give my life up! My garden is my serenity and my sanity. No one in my family can know just how hard it is on me. I don't care. I do what I can; and when I can't do anymore, I lay off awhile...okay mostly. But I'll never quit. There have been many a times when I've literally watered my garden with tears from the pain and exhaustion. But having to give up so much in other areas of my life, I feel I have to have 'something'. May God bless everyone of you and feel free to vent anytime here!

Susanne

I just found this forum too. I can empathise with all of you. I have diabetis,conjestive heart failure,high blood pressure,low thyroid,arthritis,bursitis,psorisis and the most dibilating is chronic depression.

My DD lives next door and has pretty much the same as me except she has back pain and spasms too. So we can rant to each other.My DH of 48 yrs died 3yrs ago. I can't seem to get over that.
plus have lost 2 very close sisters in law and a close neighbor. I feel like everyone has gone and left me behind.
I have a lot of trouble voicing my pain and feelings so i just sort of ramble on.
I learned a long time ago that other people don't want to hear about someone elses pain either.
Before i got so bad DH helped me make flower beds and i love growing flowers so much. Before DH died we had a large veggie garden too. I let my flowers go the last 2 years but am going to try to work with flowers this year. Have decided to try container gardening and houseplants.
ceresone,i remember you fondly from ozarks forum. I'm so very sorry about your DH and your problems. My thoughts and prayers are with you as with all the others.
Things are a little slow on Ozarks forum but come back and post some.
Reading this thread lets me know we can go on a
little longer anyway. I'm a long way from having as many problems as most of you.
I also have 2 dogs, a chihuahua-pug mix named cricket and a hound named Dillen that i love very much.
Have the best day possible,
vickie