My Online Journal
A Little More Personal
I am a Contributing Editor for
Come join me and read some of my Hummingbird articles!
Below you will find some excerpts from a book that is to be published soon (hopefully it will be soon). All material is Copyrighted.
Did you know that "arthritis" is NOT a disease that
strikes only the elderly? That a large majority of sufferers are little
CHILDREN? Yes, that's right helpless little CHILDREN!
And the worst of it is, it is by far one of the most painful
diseases that you can imagine in your wildest dreams! I know,
I have suffered with this disease for almost a quarter of a
century. And being an adult doesn't make it any less painful,
yet it is so hard to imagine a helpless child suffering such
excrutiating pain! And since there are no visible signs, (no large gashes, no blood) no one can see the awful pain or misery it's victims suffer!
So I would like to make an attempt at helping others to understand, in hopes that they might be little more helpful, a little more compassionate. Even opening a medicine bottle can sometimes seem an unsurmountable task! The
next time you see someone struggling with a heavy load, trying desperately to open a jar or a door, why not lend a hand. You might even find yourself letting someone else go first or have the best parking spot. Who knows? NOT! :-) (Not every disabled person has a handicap permit, I don't) Sometimes we would just like to forget that we are handicapped.
The best attempt I can make at describing this pain is to ask
you to IMAGINE you were cutting up a chicken to fry. Sounds funny, I know, and perhaps a laugh IS in order here.
But now, imagine when you are cutting up that chicken and you twist the leg joints out of their sockets to separate the pieces.
Believe it or not, that pain you IMAGINE is about as close as I
can come to describing this pain. It honestly hurts that bad
MOST of the time. And so begins the vicious cycle.
You take medications to dull ((YES, only DULL) the pain, the medications destroy your stomach(yet you don't dare NOT take them), so you take more medications to control the nausea, ulcers, colitis, and holes burnt in the lining of your stomach. Now you have so many meds in you that you can't sleep so you take sleeping medication because rest is detrimental to your healh as well as controlling rheumatoid arthritis, so you feel groggy and tired all the time. The medications cause you to swell up like a toad frog, along with many other side affects too embarrassing to mention. Now you feel ugly and digusting. Most of the time you "just don't feel like doing anything" but you push onward, what choice do you have? You feel as if your are a burden to everyone...you feel hopeless...useless....And you even sometime wonder why you struggle so to stay alive....then you realize "your not alone" and there are those who love you NO MATTER WHAT! So you struggle through another excruciating day.
Like My Sweet Mother used to say "I was sorry cause I had no shoes 'til a met a man who had no feet." I remind myself of this each and every day of my life. It keeps my feet on the ground. No matter how bleak things may seem, there is always someone who is worse off than you, and although it doesn't make your burden any lighter, it does help to know it actually could be worse! And so I write this in hopes of helping others understand what their loved ones are going through.
Contrary to popular belief, Rheumatoid arthritis isn't an "old person's" predetermined, unavoidable disease! And yes, it is a DISEASE! It is a DEVASTATING DISEASE! It strikes when you least expect it.Young or old--it DOES NOT discriminate! It takes over your life and the lives of your loved ones.
Your every waking moment is controlled by this disease and the medications you must take, in order to survive! There is no cure for this disease. It can be controlled to some extent
with proper medications and the proper care. But there is much
more to it than that, it requires more love and kindness and
understanding than most humans can muster! Such people are very few and far between! And I am sure that the good Lord has a "special" place reserved just for them in his heart!
If you suffer with arthritis, especially rheumatoid arthritis or you know someone who does, please tell them about my page. Hopefully they will find help and comfort in visiting my pages.
The links provided should be of some help to you if you want to
learn more about coping with this devastating diseases. And help in finding proper care. As well as information concerning the
medications prescribed for this disease.
October 21, 1999
Today started out to be one of my "bad" days. I feel so bad. My hands hurt so badly I can barely type. And yet, with no one to talk to, doing this helps me cope. There doesn't seem to be a spot on me that does not hurt! Sometimes I plead with God to just let me either get well, or die! I first started out saying I had RA, but as time goes on and the disease progresses many people (me included) develop many other illnesses. Over the years that I have suffered with this disease, I have developed Fibromyalgia, Hypothyroidism, Osteoporosis, Stomach disorders, high cholesteral...among other things. I have been taking Methotrexate (chemotherapy in pill form), Prednisone (which is steroid), Synthroid (thyroid med), Folic Acid (anemia), Zocor (cholesterol), Prescription strength Pepcid (stomach). Almost all of these are dangerous drugs, and most you aren't suppose to take for long periods of time. I have had to take them for years though, because it seems nothing else works for me. Everything else either causes stomach problems or just plain doesn't work! I have had SEVERE stomach problems, in and out of the hospital so many times! The Zocor and Methotrexate both CAN affect the liver, and it really scares me that I have to take them. Prednisone has too many side effects to name. If it were possible to do without these drugs, I would be so happy! If you or someone you love are looking for information about these drugs, there are many great sites such as:
Click Pharmacy(Get them filled on line)
Another Pharmacy (with Links to manufacturers such as Merck, Monsanto, Pfizer etc.) just to name a few.
Remember, it is SO VERY IMPORTANT that you find a good physician. One that understands that you must work "together" in controlling this disease! You should keep notes, or a journal in=between visits, otherwise you will forget all of the "little" pains and "symptoms" you have before your appointment date. And these may seem small in comparision with your disease, but sometimes they can be EXTEMELY important! Don't hesitate to ask questions, even if they seem stupid to you, you have every right to know everything! Also, before you allow your physician to prescribe any of the above medications (or any others for that matter) you REALLY should check them out! And use them only as a last resort! Hold out as long as you possible can! Just because your physician says something doesn't mean it is written in granite! Make certain you understand all of the facts before you agree to anything!
If you are a family member or care taker of someone with this disease. Please educate yourself as much as possible about it! There are many good links concerning it, but very few can describe the devastation that can take place. Unless you have it, you can't possibly understand it! It is nothing short of a nightmare that will last your entire life once you have developed it. And yes, your entire life even if you are the "just" caretaker, because this disease not only affects and destroys the patients life, but yours too!
First of all, as I have said, there are no gashes, slashes, no blood, no cuts NOTHING that the naked eye can see! But all the time that you are looking at that person, remember THEY ARE IN EXCRUTIATING PAIN! They may feel as if they have a permanent case of the flu. Depending upon the severity, every joint in that person's body feels if it is being twisted. To help you relate, imagine someone is twisting your wrist, ankles, knees, even you neck and refuses to let go! To REALLYunderstand this, twist your own wrist as far as you can. Now, imagine having to stay like this for the rest of your life (but with more of a twist than you could possibly endure doing it yourself)! And, in more joints that just your wrist!
Most of the time, you feel so tired you don't want to move. But you know you must! You can't give up! If you do, the disease has won! You ache all over, your head hurts so much sometimes, you can barely see! You can never run again!
You fear being alone, what if you get in a predicament that you can't get out of without help? I can't tell you the times I have gone into a public restroom and couldn't turn the knob on the door to leave! I would have to wait for someone to come, wait for them to leave and go out with them or ask them to open the door and have them look at me like I was some kind of nut! My hands do show the devastation, but it takes years for this to show. I have had 3 surgeries on my wrists and elbow, but it just helps for a while.
Sometimes, you can't even eat, or take you meds, because you can't get the lids off of the jars! Many times you don't won't to eat anyway because Nausea overwhelms you!
I'm going to have to stop for now...finish this later...please come back, I desperately want to help you understand this for you and your loved ones sake! Bye for now...
Blessed shalt thou be when thou comest in, and blessed shalt thou be when thou goest out. Deuteronomy:28
Come join me and read some of my Hummingbird articles!
Did you know that "arthritis" is NOT a disease that
strikes only the elderly? That a large majority of sufferers are little
CHILDREN? Yes, that's right helpless little CHILDREN!
And the worst of it is, it is by far one of the most painful diseases that you can imagine in your wildest dreams! I know, I have suffered with this disease for almost a quarter of a century. And being an adult doesn't make it any less painful, yet it is so hard to imagine a helpless child suffering such excrutiating pain! And since there are no visible signs, (no large gashes, no blood) no one can see the awful pain or misery it's victims suffer!
October 21, 1999 Today started out to be one of my "bad" days. I feel so bad. My hands hurt so badly I can barely type. And yet, with no one to talk to, doing this helps me cope. There doesn't seem to be a spot on me that does not hurt! Sometimes I plead with God to just let me either get well, or die! I first started out saying I had RA, but as time goes on and the disease progresses many people (me included) develop many other illnesses. Over the years that I have suffered with this disease, I have developed Fibromyalgia, Hypothyroidism, Osteoporosis, Stomach disorders, high cholesteral...among other things. I have been taking Methotrexate (chemotherapy in pill form), Prednisone (which is steroid), Synthroid (thyroid med), Folic Acid (anemia), Zocor (cholesterol), Prescription strength Pepcid (stomach). Almost all of these are dangerous drugs, and most you aren't suppose to take for long periods of time. I have had to take them for years though, because it seems nothing else works for me. Everything else either causes stomach problems or just plain doesn't work! I have had SEVERE stomach problems, in and out of the hospital so many times! The Zocor and Methotrexate both CAN affect the liver, and it really scares me that I have to take them. Prednisone has too many side effects to name. If it were possible to do without these drugs, I would be so happy! If you or someone you love are looking for information about these drugs, there are many great sites such as:
Click Pharmacy(Get them filled on line)
You fear being alone, what if you get in a predicament that you can't get out of without help? I can't tell you the times I have gone into a public restroom and couldn't turn the knob on the door to leave! I would have to wait for someone to come, wait for them to leave and go out with them or ask them to open the door and have them look at me like I was some kind of nut! My hands do show the devastation, but it takes years for this to show. I have had 3 surgeries on my wrists and elbow, but it just helps for a while. Sometimes, you can't even eat, or take you meds, because you can't get the lids off of the jars! Many times you don't won't to eat anyway because Nausea overwhelms you!