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newnormaljames
06-05-2014, 09:46 AM
I have a Facebook page called New Normal where I chronicle my progress with kidney disease. I'd like to share part fourteen with you. You may disagree with parts of it so please just accept it as my own opinion. It's entitled: Inward Parts!


Some things occur by random chance and others through a series of precisely timed sequence of events. The design and creation of the human body is arguably the most amazing reality in all of the universe. Even the most intricately designed structure which man could conceive pales in comparison to what our Creator brought forth from the dust of the earth. The dust! The attention to detail and outward beauty bestowed by it's designer is mind boggling. Yet it also consists of an inner complexity beyond our finite understanding. For centuries physicians and scientists alike, prod, poke, dissect and thoroughly examine the body to further their limited understanding in their often fruitful attempts to get inside the mind of the Creator. This is hardly an insignificant task. Around every corner of new discoveries in medicine, a previously unknown highway of treatment brings forth relief to countless individuals who long to be healed of their particular ailment.


It is true that life is quite fragile and delicate. Scripture reminds us "For you formed my inward parts; you knitted me together in my mother’s womb." (Psalm 139:13) If you ever find yourself doubting this truth, consider examining the evidence. One of the most vital organs integrated within a vast complexity of others systems which keep our bodies functioning minute by minute, are the kidneys. The kidneys actually serve several purposes, the main one being the removal of wastes introduced into our system whenever, and whatever, we eat or drink. Take note of this complex "job description" the kidneys perform when working properly:


"The actual removal of wastes occurs in tiny units inside the kidneys called nephrons. Each kidney has about a million nephrons. In the nephron, a glomerulus—which is a tiny blood vessel, or capillary—intertwines with a tiny urine-collecting tube called a tubule. The glomerulus acts as a filtering unit, or sieve, and keeps normal proteins and cells in the bloodstream, allowing extra fluid and wastes to pass through. A complicated chemical exchange takes place, as waste materials and water leave the blood and enter the urinary system."


When the kidneys do not function as designed, blood is not filtered properly. Soon this effects the various systems within the entire body and diagnosis and treatment must then be sought. Life truly is a delicate balance of interacting systems. They include the Integumentary, Nervous, Skeletal, Endocrine, Muscular, Cardiovascular, Lymphatic, Respiratory, Reproductive, Digestive, and finally Urinary. Think about it, these systems all work together as one cohesive, synchronized unit for the benefit of the whole being. Peacefully coexisting, performing their functions in unison with the others.


Allow me to conclude my remarks on a personal note. Many have sought to remove the role of a Creator and exchanged the truth about God for a lie, worshipping and serving the creature rather than the Creator, who is blessed forever. Who could not bless Him for such an awesome creation. We were made in His image. We are not simply a random collection of molecules arranged in precise order by millions of years of trial and error evolutionary methods. Even if the process of evolution could get just one of these systems to function properly through chance and an extreme amount of dumb luck, there is no way that it could get all eleven systems to development and work together collectively. That strains credulity beyond its limits.


This just scratches the surface. We haven't even touched on the reality and uniqueness of soul and spirit. For man in not simply flesh and bone. We have been given a spiritual nature that is separate and distinct from the body in which it dwells. Meanwhile we groan, longing to be clothed instead with our heavenly dwelling. For we know that if the earthly tent which is our house is torn down, we have a building from God, a house not made with hands, eternal in the heavens.


James

Dirty Don
06-05-2014, 09:54 AM
Need to read the suggested rules James...hope you feel better now.

pberggren1
06-05-2014, 09:58 AM
I really like that James. You are very good with words. Thank you.

newnormaljames
06-05-2014, 10:00 AM
Actually, I have active WG and am feeling quite miserable at the moment. Writing is therapy for me so please indulge me. Thanks.

pberggren1
06-05-2014, 10:02 AM
What treatment are you on right now James? I'm sorry you are flaring.

newnormaljames
06-05-2014, 10:04 AM
Rituxan #4 about two weeks ago. Hoping to feel better next week.

pberggren1
06-05-2014, 10:05 AM
Ah yes, the RTX can make one feel a lot worse when treating a flare.

Marilyn
06-05-2014, 12:48 PM
Hi all, I haven't been to forum for a long time but wanted to comment about the Rituxin. I too, just finished my 4th set of infusions. I was taking it 4 months apart but was able to go to every 5 months. My rheumatologist has me take 1 then 14 days later take the 2nd one. Some times I only feel weak, sick to my stomach, so tired for a few days, then start feeling well. after the last infusion I felt pretty good after the first 2 days, then took the second one, the first 2 days weren't too bad then it hit me at 5am on the 3rd day, and I felt like a truck had run over me. Before I started Rituxin , my ANCA was 636! After first treatment it went down to 136! After the 2nd set it went down to 88, after 3rd, to 66. Normal is below 20. My MD orders the ANCA about 2 months after completing the 2nd dose. My monthly labs have improved. I have had Weggeners since Sept. 2010. I am on 50 mg of imuran. When he increased my imuran my kidneys started getting worse, which is the reason he changed the treatment. I hope this info will someone. Good news, I was married in April!
he loved me even with this illness!

newnormaljames
06-05-2014, 12:58 PM
Happy for you. Be blessed!

Debbie C
06-05-2014, 01:19 PM
Sorry you are feeling so miserable right now James. Were you just dxed recently ? Is your involvement in your kidneys or elsewhere also. Several people here have said that is take awhile for the rituxin to take full effect but you should start to feel better soon. What other meds are you on ?

newnormaljames
06-06-2014, 01:36 AM
Thanks for asking Beverly. I was diagnosed with WG two years ago and am currently on Rituxan #4. I am at 40% kidney function because of it. Fortunately other than BP meds that is all I am on. You are right, in a few weeks I should start feeling better.

newnormaljames
06-06-2014, 02:23 AM
Thank all of you who liked this post. Apparently it was unwelcome by the moderator therefore I offer this explanation: My testimony and my disease go hand and hand, therefore it is impossible for me to separate the two. If Christianity is offensive to some members and the expression of religious beliefs against the rules of this board...even if those beliefs AID in my therapy and healing...then it's best that I refrain from posting here. It is not my intention to sound mean or offensive. I need more than just information, I need a place of support and prayer. This is not a fun and games disease and I need the Healer to move in my body. Sorry if I offended some of you by mentioning the name of The Lord Jesus Christ. Best of luck to you all. Sincerely, James.

Titus3:2
06-06-2014, 03:30 AM
James,I don't see anything offensive with what you have written.I believe the rules not allowing political or religious views is so we don't head down the "Slippery Slope".I am sure some people could get really nasty,and then we would need a rule preventing Wiseasses.I hope you will stick around.Keith.

Alysia
06-06-2014, 04:13 AM
Hi James,
I love what you write. it is so beautiful and touching.
I think that most of us couldn't have survive this disease without God.
I don't think that there is something against the rules of the forum because it is not an argument pro/anti relgion. it is just a beautiful expression of the way you handle tough states.
I hope that andrew can see it this way as well.
please share with us, James. please stay and let us support you and comfort you. I know how it feels to be lonely weggie. here , together, we can get the strength to overcome whatever....
I am sending to you my prayers and hugs :hug1:
I hope that you will feel better soon. it takes some time for the rtx to start working.

pberggren1
06-06-2014, 04:15 AM
You did not offend me James. But unfortunately many people today are anti God.

Alysia
06-06-2014, 04:18 AM
you didnt offend anyone James. at least it seems so to me.

Marilyn
06-06-2014, 05:09 AM
James, I am a Christian and believe exactly as you have written. Your writing uplifted me and I prayed for you. I was the one that explained my reactions to Rituxin. The more we talk about the results of the tx. And side effects, it encourages other readers. I know who my strength comes from and we are never suppose to back down from our faith, and remember Jesus never said it would be easy, but He did say he would go through it with us. Be comforted that you aren't alone in the disease or your faith and be encouraged forHe is with us. Marilyn

Dirty Don
06-06-2014, 06:15 AM
Then why don't you all start a religious faith based WG site for you to acknowledge your ways. Phil is finally getting his way simply due to numbers and ignorance. This was supposed to be an apolitical, non-religious site. I'm outta here...take care all.

Titus3:2
06-06-2014, 06:53 AM
Dirty Don,I admire the work you do here.I am only a lurker.I support the rules against religious and political views.Why?I do not want to see someone using religion to spread hate.I have seen plenty of that.Please accept my apology.We were just talking.

Alysia
06-06-2014, 07:25 AM
Don. My heart is broken because our loss of Barbara. I guess that yours as well. My tears has not being dried yet. Please dont go and break my heart once again. Ok? It is no time for wars. I am sorry if something in this thread hurt your feelings. Hugs?

Sent from my GT-I9100T using Tapatalk

Debbie C
06-06-2014, 07:55 AM
I think this can be handled a little more diplomaticly...Everyone has there own believes and alot ( me included ) pray to God to make things right not only for me but with everything in this world. If some people are offended by what is said on the thread then DON'T read it.
Don, have another cup of coffee,think about it but don't leave.
Andrew I'm sorry if I have broken any of the rules but I don't think I am alone here.

pberggren1
06-06-2014, 08:54 AM
No, you are not alone Deb. Most people believe in Jesus. But there are a few that are somehow offended by Him and His Church.

annekat
06-06-2014, 12:03 PM
The rules about avoiding religious and political discussion are not against Jesus and Christianity any more than they are against Buddhism, Judaism, or any other religion, or against Republicans or Democrats. Titus3:2 is right that they are in place so we don't go down the "slippery slope" and end up arguing about religion and politics all the time, which could create a great deal of hostility and is why we don't need to go there. That isn't what this forum is about. Many of us have briefly mentioned God and prayer in our posts, as in the context of well wishes toward someone in need, with no objections raised, and I think we should leave it at that.

I hope that when Don said he was "outta here", I hope he just meant outta this thread for now and not outta the forum!

vdub
06-06-2014, 03:08 PM
I hope that andrew can see it this way as well.
It wasn't Andrew. It was me and what's happening right now is why the rule exists. Let's move along now to something more productive.

vdub
06-06-2014, 03:23 PM
BTW, Annekat..... Well said.... :-)

annekat
06-06-2014, 03:44 PM
Thanks, vdub.

LisaT
06-06-2014, 04:59 PM
I would hate to see anyone leave the forum because of the discussion, or anyone else feel unwelcome to express themselves when their experience of illness and the path back to health is intricately connected with their belief system. I hold different religious beliefs than those expressed by newnormaljames (although with much in common too) and I found his post interesting and moving. However, I can also see that when members disagree or see these things differently the discussion could devolve and remove the focus from what the forum is meant to be and do. We're here to provide information and support to each other, and both religion and politics can unfortunately divide... Because not everyone has the same beliefs and opinions but everyone's, whatever they are, tend to be strongly held. And for some reason that is inexplicable to me, people often think their belief or idea is the only one that can possibly be 'right ' And everyone else is wrong... Which creates problems.

Perhaps these discussions could continue privately or through Facebook if people wish to share their private contact info... I do hope it's still okay to mention God, prayers, whatever or whomever someone believes in as it would feel unnatural to have to totally censor that part of our experiences.

Dirty don, please stay! Every day I've been on here you've made me laugh and I need that desperately right now. I've been meaning to ask you why Dirty but almost afraid of the answer LOL.

and newnormaljames, it seems many here are interested in what you have to say on the topic, perhaps you could pm those who ask, your blog URL and they can join the theological discussion there? I don't want anyone to go and this seems like a reasonable guideline to me.

Alysia
06-06-2014, 09:33 PM
waiting for reconciliation between Don and Batman..... please, Don ? I will bring you some coffee :wink1:

http://media-cache-ak0.pinimg.com/736x/da/ed/05/daed05846490a3960bb44581d4ca78f2.jpg

annekat
06-07-2014, 02:07 AM
Because not everyone has the same beliefs and opinions but everyone's, whatever they are, tend to be strongly held. And for some reason that is inexplicable to me, people often think their belief or idea is the only one that can possibly be 'right ' And everyone else is wrong... Which creates problems.

This is the crux of the problem. It goes especially for religion but for politics, too. It is why most people don't discuss religion or politics with a group of people as diverse as we are. If you present your view as the only possible right one, you will offend people and you in turn will be offended by what they have to say in response. There will be no resolution, and it will simply get in the way of what we are here to do, discuss and share about the disease we have in common.

On Facebook, anything goes, and I agree that's where these things should be discussed, if at all. There, it is easy to ignore anything you don't want to be involved in. Private messages here are another option, people can argue away all they want, or try to convince others of their "right" views. Mentioning God or praying or faith in regular posts here are not a big deal, since we are not pushing any particular faith when we use these terms.... they are terms we can all relate to whatever our faith or beliefs happen to be.

LisaT
06-07-2014, 02:48 AM
SO, after a good night's sleep can we all hug and make up? Please? Whoever or whatever you believe in, he, she, it, or whatever it is or is not, would not want any of us to lose each other's support or cause each other any additional stress or suffering. It is entirely understandable that people feel vulnerable in the midst of their grief. Let's put aside the differences and get back to providing each other a place of empathy, understanding, and love...:hug1::hug1::love::hug1:

annekat
06-07-2014, 03:08 AM
Yes, let's do as vdub suggested and move on to more productive things.... Focus on what we truly have in common, this wretched disease we call Wegener's or GPA.

LisaT
06-07-2014, 03:13 AM
AND, so much to give each other and learn from each other...

andrew
06-07-2014, 08:56 AM
Annekat thank you for your posts - you put it much better than I could have :)

As a reminder, the rules are here: http://www.wegeners-granulomatosis.com/forum/forum-rules-please-read-before-posting/203-rules-posting-site.html

As vdub says - lets move on to more productive discussions.