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Posted 3/10/2008 11:09 AM (GMT 0)
I have found myself scared. Scared with all ive learned as of late. I find myself waking up very alone feeling  scared and tremendously in fear. I lay down with what one would liken to a stomach flu. All kinds of pain in the abdomen.

Although i feel pain bilatteraly in both kidney's, my left is the predominant one. I dont know much of what they'd look like upon ultrasound but there was a distinct diff on the left one. Where she pressed, wow. Also a huge dark, egg shaped area that i observed her taking her mouse and measuring the perimeter of.

I feel like i want to do so much , and nothing at all.

I want to do what i can while i can , but i also am eaten up with wanting to just stare off...and wonder the ugly question of why.

Why will get you nowhere.

I've learned from this life that it rains on all. The wicked, the upright in heart, the short, the tall, the pretty, the ugly etc and so on.

It's of no great time spent, asking why.

What<<is a question worthy to be asked. What do i now do with the time i have.

What should i leave, letters for my children, a painting for each?

What should i allow medically as far as intervention. How far and what am i willing to undergo to remain alive to fight MS? (wow never thought id be asking that lol)

This is merely a post that allows me a vent. I hope that you view it as a support type of thing. So that i dont feel so alone in this, i place my words here. :)

Ms, as crazy a disease as it is, is advancing in treatments. Its done so much damage to those who were not fortunate to have these medicines from the beginning. Even now more are in the  works and i honetly think , (i really do) that there will be medicines coming out that target alot of the uncomfy's.

As far as embarassment or adjusting to life with disability. Imagine that being totally disease free were the disability. Afterall over half of all americans suffer some form of chronic disease.

Ive leraned some hard ones

1. alot of people really dont care about our limp (or whatever your specific thing is) as much as we care about what they think about it.

2. You can actually utilize your shortcomings to do greater things than can the average man. Most will listen to someone with experience before they will lend an ear to one who had been through nothing.

3. We all have a purpose. Even if you have no clue of what yours is, it makes it no less true. So, allow this life to be much like school. As we sit it the classroom let us learn and as the time draws near for summer break (the end of school) let us wistuflly look out of the windows and toward the sunshine).

4. I  know it hurts to hurt. I know its hard to explain to anyone what you feel. thank God though that he's allowed for support chats and the like (such as this) to keep us from isolating ourselves.

5. get out of the house at least 1 time per week, even if it is to feed bread to the squirrels at a local park. Or try visiting a nursing home, i did and its simple. You sign your name as a volunteer and cllip a badge on and begin to make friends. What wonderful companions you meet! Since its a volunteer thing, you can go 1 time per month or 4 days per week. Totally up to you! They are older and have stories that will make you laugh, cry, and envision a life of another time alltogether. Back when they were young.

6.Since MS is day by day and sometimes hour by hour and minute by minute. You really dont have to plan nursing home or squirrel feeding. The nursing home here will be grateful if you stay all day or only 10 minutes!  If you wake up and feel up to it, then theres your day! Sunshine around you , even while avoiding heat, can llift the mood wonderfully!!!!

7. Most of all. we see our disabilities but in alot of ways i see these things as strengths that we have to reaize as such before we can utilize them to their fullest. Afterall has it all been in vain? We have indeed been tested and tried. We still remain. Why? (now ill use the word why)......you have a purpose and its up to you to use it.

Many warm wishes to you all. This world can pack many a punch , it doesnt always seem fair, but i trust in God. the great news is that i do not only trust in him while things run smooth, but i know that he's even closer (if possible) when his children are in need. Yes he can fix us all with a wave of his hand. However, only he knows the larger plan. To think outside of the box is a hard thing to do. but pls know this. Even if you do not know him, he knows you!

thanks,

kiera yeah

Posted 3/10/2008 2:06 PM (GMT 0)
Oh dear Kiera, I'm so sorry you even have to consider any of this. Stay strong. Listen carefully to your doctors. Do what you can to stay together for your children. Hugs from here.
Posted 3/10/2008 2:10 PM (GMT 0)
Kiera, you ask in another post about kidney transplants.  If that is possible for you, I'd go for it! The medical community has made great progress in kidney transplants. They're almost "routine" - -that is, if someone needs one, it really is becoming a "no big deal" sort of transplant. Now obviously there are lots of steps you have to take before you get that far...see what the kidney doctor says, see if there are meds, consider all those options.  Dialysis isn't easy, for sure, but if it will keep you alive, then go for that too. Usually what happens is someone goes on dialysis first, and a kidney transplant is a later option.  In the meantime, all I can offer is hugs.  Take care.

Posted 3/10/2008 3:21 PM (GMT 0)
Hey Kiera

Wow...i'm so so sorry. It's amazing what life can throw at u...but u'r head is on right. Lean on God in all things...this esp...and He will carry u thru this. We can't know His plan or even begin to guess at it. Oftentimes we only see how it all meshes together AFTER we've been thru the valley.

Like Uppity said, if u can do anything to grasp lilfe, do it! One thing u have to remember is that God places people and technology in our lives for our good. This technology..this science...of transplanting is a gift if u need it. Talk to u'r docs and get the inforation and a plan to go forward. This is something that if u don't do for u'rself, u must do for u'r children and husband. They still need u. Hang on friend and keep u'r head on for this. I know it's shocking and hard, but now is the time that u must stay focused with tunnel vision on u'r health.
Posted 3/11/2008 12:02 AM (GMT 0)
Keira,You have touched my heart and many other people I'm sure,God has given you that gift in your writings, I will add you to my prayers,and if you pray the rosary,or don't know how,there is a (vitual rosary) web site you can put in a pray cast request,and people we pray the rosary all over the world for you.I will add you to my pray request.....Debi
Posted 3/11/2008 2:41 AM (GMT 0)
Kiera, May I give my thanks to you for a wonderfully grounding post!  I know you're facing some very tough days, I'll keep you bathed in prayer and know God's plan is wonderful no matter how bad it looks. The best part of knowing Him is we're in a win/win always! I have found myself of late talking to Him about my lofty old age plans to get past 100 (standing joke in my family to outlive them all!) but now to realize it most likely won't happen and so many of your thoughts have rambled thru my head too as I think on these times.

Thank you for sharing such gracious insight. I'm printing your pointers to keep in my bible to keep me grounded when I fall into my little pity parties during pain days. May God richly bless you in all your decisions and may His healing hand be with your doctors all the way.

Posted 3/11/2008 7:11 AM (GMT 0)
Hi Kiera

I'm sorry to hear about all you're going through. My fiance just got a kidney transplant in December and is doing really well. Before that, he was on dialysis for 5 years, the last 2 he did it himself at home. If you have any questions, please feel free to email me at the address on my profile.

Take care,
Shar
Posted 3/11/2008 11:32 AM (GMT 0)
I wish to thank you all.

After alot of prayer i did get a call yesterday. both kidneys are of equal size. This is good in the sense that when failing they usually shrink. They do however, feel swollen. Not much output. Also my best protein spillage was 250 , and the worst being 457 (whle they thought it was non nephrotic) now it is 39, maybe im not understanding this. I was told as kidney disease progresses you cannot filter protein so you spill more, it may be that once they do begin to fail it lowers/ Im not sure at all about this one. Photogirl do you have any idea?

D'awesome, Oh how you humbled me. I can appreciate all that you ponder upon and if noone mind's id love to continue to express here (since ms is where i began) the upcoming things that i go through and think upon.


thank you ms. uppity , if given the choice , even if i find the rest/peace i seek for myself i shall try to remain for my child and my hubby.
Rhonda, ill grasp, pls pray that my hand in held in a grasp that doesnt let me slip (we know that he is able)

Thanks for the email photo, very kind of you, i do plan on emailing you. We've all probably researched MS until our fingers hurt lol, now i need to KNOW what im dealing with . Even as my doctor told me, Your on top of your stuff, thats why you do so well.
I have a half of a clue that since kidneys have a hard time with phosphurus, this is why the bone pain and also why veggies will not suffice. Also kidneys are a great food but too high in protein for myself at this time. I need to work out a diet and know my questions when i meet this doctor. He comes with a whole team (thank God) so it will be more than one mind trying to figure out what needs done.

1mom , im not catholic, and shared 1rst communion with my younger child. He opted not to go with the little ones but remain with me during adult service. Id not take back that time for anything in this world. When my hubby's mother passed away i found myself standing in a huge cathedral and reading passages for her funeral. I've been allowed and afforded many blessings lately.

You all are blessings as well!.....
Some say live today as if its your last..that results in much sadness...I'm beginning to try to learn to live each day as if it is the only gift you have. 1 day. What would you do with the gift of 1 day upon planet earth if per sey you were given a family around you as well? I wish to try and operate from this perspective.

Id like to continue to remain here on this forum as i still do of course have MS. Is this okay with all of you? I don't wish to offend anyone.

Also a request: please pray that i do not go through another exaccerbation as i await the team of kidney doctors on the 19.
Oh and pat yourselves on the back for making me go get the sleep thing checked! You saved at least my life then, and perhaps someone elses!!!!!!!!

D' awesome. Ponder, meditate and seek ,you know you will find:)

1mom your an inspiration!

thanks to all, if you hear or read of anything i should ask, or of any sites that might have links i could use please share , as to be honest my headaches are slowing me on the research end of things for now.

much love,

kiera
Posted 3/11/2008 2:34 PM (GMT 0)

I can't speak for the moderators, of course...but OF COURSE you should stay here! 

I so hope the kidney specialist can figure out what's going on and get you some help. Take care, keep in touch as you can. And hang in there. We're all praying for you in a variety of ways.

Posted 3/11/2008 2:50 PM (GMT 0)
thank you ms. uppity. I do realize your faith is different than some. As all of us differ in whom we are and how we go about things. I appreciate your thoughts and taking the time out to always be there. I've seemed to of needed it so much lately.


I love this support site and to go to a kidney site i dont feel would help me right now. Theres too much with the autoimmune that will come into play even if a transplant is done, that might help someone else someday, should their organs do a dirty on them!

I feel comfy here and began here, and id love to stay here now.

I'm hanging as best as i can. I'm sore and a bit sowllen but as i've learned recently, it can always be worse.

thanks for your support--it mean's alot!

thanks

kiera
Posted 3/11/2008 3:09 PM (GMT 0)
Hey Kiera

Of course stay here. MS or not...u'r welcomed. Please do let us know what the docs say and what u find out about the spillage. Take good care.
Posted 3/12/2008 12:04 AM (GMT 0)
Dear Keira, Thank you, for saying that,but, its not me thats the inspiration.. It's you, that inspires the people you touch.
Posted 3/12/2008 12:49 AM (GMT 0)
Wow, Keira, (head bowed) it's all mutual.  Many prayers for you and all the decisions. Wisdom to your doctor team, hopefully they'll know what's best! 

And I look forward to your reflections for me to ponder :-) many times over as I explore and learn more and more. Already my eyes have been opened alot! 

I too shall be curious what your kidney's are telling you and what is best diet-wise. I tend to be susceptible to kidney issues and have already in recent years baffled the doctors a couple of times with unexplained (stonelike) pain when no stones show, kidney infections and bleeding without warning and in general my GI/UT is always in one uproar or another. So I shall be curious to know what you learn too and praying you great relief as you go along.

I like Rhonda's signature: Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child  So often the Lord has left me in the midst of a raging storm only to prove to me He can calm me by His very presence!

Posted 3/13/2008 1:30 PM (GMT 0)
thank you all for welcoming me to stay!

D'awesome , i had always baffled many doctors with issues of those organs and stonelike pain when there was none as well. Sometimes i think (ive spoken to doctors about this ), stones being so microscopic can pass or simply not show on catscans. The pain can go to a 10 and yes indeed its kidney stone pain, only to have a doctor tell you they didn't find one.

One of the ways they explained to me that when it eludes their tests but you go through something like that, is that if you suddenly with no previous stomach discomfort find yourself in such pain that you double over or cant speak for the pain, (naseau sometimes is there and sometimes isnt) but if after this horrible pain you suddenly feel a real urge to go to the bathroom but once there only find a very small amount of urine come out, this is usually a stone. This is also if you then return to normal after these things have occurred. I guess that sometimes we dont take note of the times we've felt that urge after the pain or how little urine comes out. But this is usually how a "passed" stone will act. I had this happen and was told it was a stone.

I had another experience that was as you describe but when I showed at ER it was treated as infection and I was told that no stone showed. Again the doctor told me that not all stones will show, if its only one and moving at the time etc. Also that some infections can indeed mimmick the pain of a stone.

When you are concerned about your kidney's though, what ive found most helpful in finding out how they are doing is to request a 24hr urine (jug) that you deliver to lab. It will tell you how much protein you spill, if its 50 or less there is no real reason to fret, if it exceeds 100 there is need for further investigation. Also if its accompanied by blood in this same specimen. Im assuming your talking about blood in your urine?...That can be a sing of a type of Chronic Kidney disease or infection or stone. This is why Creatine clearance helps to let you know "your overall kidney function" If your kidneys are not diseased this level will test within normal limits and you can lay aside the worry that disease is present.

There is one kidney disease that forms stones in grape like clusters but those are obvious on scans.

So please if you haven't as of late, ask your gp for a 24hr urine and see what your protein spillage is (if its low this is good) and your GFR or Creatine Clearance (your overall kidney function), if both of these show good, its likely the blood is coming either from stones OR frequent infections. Is this showing on labs or is the blood visible to you at times following the stone like pain (would make one tend to think stone as they cut as they pass and cause blood).

Diet wise, youd really have to know your kidney function before you wish to undertake such a strict diet. Its a low protein diet for as the kidneys decrease function they no longer can filter things such as protein. Supplements for calcium are needed because alot of the needed things to eat for your bone health contains phosphorus and the kidneys cannot process it well.

So, i can indeed lend you many healthy ways to eat as well as speak to you about the Gi part, i have GERD as well, but again, before you begin a diet that is so restricting that it can even cause muscle wasting (limit of protien) please get a 24 hr urine done.

The repeated infections do need to be watched. I do know a girl who has one removed for repeated infections so that it would not damage the other. I dont say this to scare you but there are many things that can be done to find out how to deal with what your going through. Such as have you had urodynalysis done? To see if residual urine in the bladder might be causing uti's that eventually make their way to the kidneys?
If you can start with the 24 hr urine and get the results i can better help you to know what to do next!
(your in my prayers, i know that stone like pain)!!!!!

I like Rhonda's quote as well. I've had that happen many times as of late. Ive also had a deeper hunger for truth and its led to alot of insight i had been short of prior to all of this.


Please let me know if you do get a 24hr urine or if a past one has been done, maybe try to obtain the labs and let me know what your levels were, I can tell you what they've told me about each of them.

Ms flared due to the stress of this but by the end of yesterday I found some peace and acceptance of understanding I cannot control certain things. I will do my best in what I can do and the rest is in his hands.


Much love and prayers to you all,


kiera
Posted 3/14/2008 11:39 PM (GMT 0)
Wow, Kiera, you hit my nail on the head several times and I guess I'm gonna have to start pursuing the low protein thing too... I just went to the doc today with kidney/bladder issues and found out I've got another UTI on it's way to a kidney infection, running the same course as the last one that went to blood.  I haven't had a stone issue in a long time (did many years ago and did pass it) but the phantom stones, I was with a doc then who had his own clinic with the cat scan on site and did it immediately only to be baffled by "not one calculi in my system anywhere" and flushing with cranberry juice is a no - no unless I cut it with water cos it seems to cause "kidney colic"  (cramping).  Thought I was doing a good thing til I realized I was causing it!

I have an appt with my GP in April for my lab's review... the Uric acid is down finally (good and nice low) but this is the 3rd UTI/kidney issue in 4 mos.  So we're gonna talk...

In the meantime, I appreciate all the input and help big time... I'm learning so much I thought I understood and don't know at all!

 

Posted 3/15/2008 1:57 AM (GMT 0)

Dear Kiera,

What can I say?! I was so very touched reading all the posts in this thread! I cannot remember if I had told any of you but I am a clergy and God has certainly taught me MANY things though this journey we call life. Besides the MS I also have Sarcoidosis. Seven years ago my colon perforated and I had to have an emergency colectomy. Six months later I had a dihist and had to have an emergercy reversal. The doctors told my family to get ready that I might not make it. Those days are very fuzzy for me but one thing I remember being told that people were praying for me everywhere! I also remember one night in my "twilight  awareness" singing every hymn I knew and the nurses coming and telling me I needed to rest. I told her, she told me later that I said, "I can't rest, God is going to get me through." By morning that nurse came into my room in tears and said, "you're going to be OK, you've turned the corner!" A couple of years later I was firmly diagnosed with MS. My church would ask me, "Pastor, why does God do this to you?" My answer is, "God does not DO this but allows it for our growth and it is up to us what we do with it! It is in His hands to heal us and He certainly can. I told them "Paul had his thorn in the flesh and still ministered and so will I."

Please bear with me as this subject has really touched my heart. In the last couple of days I have been contacted by two people with whom I was a student clergy with. Both of them are also stricken with illness but, they, like me have decided that the illness will not rule them! And that's the key, I believe! I may have MS but, MS DOES NOT HAVE ME!!

God Bless you Kiera and indeed all of us. May we all keep going and know that we have a purpose and there is someone out that who needs the knowledge and the wisdom we have. In my early years of ministry I preached a sermon called, "the puzzle sermon." As people entered the church they were handed a puzzle piece. In the front of the sanctuary I had a card table. As the sermon progressed I laid my piece on the table as asked everyone to come and make the puzzle. The point? I am only one piece in this life and I need all God's people to fill my life and make the puzzle.

I am not perfect, by any means! There have been times when I have written and needed support and, I'm sure there will be again. I'm human too! LOL

I apologize if this is too long or if you think I have gotten off subject but I hope it serves as an encouragement!

Much love and Prayers,

"Revvie" (if I could change my user name I would use this)

Posted 3/16/2008 1:34 AM (GMT 0)
Yikes, it sounds like you've been having a rough time of it! I admire your ability to stay positive though, and I wish you all the best!
Posted 3/18/2008 2:14 PM (GMT 0)

Revvie,

Indeed your post was encouraging and many i think forget the clergy are human too lol!...Ive seen a puzzle type of thing taught where none of us could recognize what the entire picture was (considering we each only held one blurry piece) once put together it was a gorgeous display of flower gardens. In other words HE see's and know's the big picture!

Paul indeed kept his thorn. Job isn't to give everyone a fairy  tale ending but i do find it interesting that it was once he had accepted his condition AND forgiven his friends that the change was given.

I'm so sorry that you've been through so much. Then again, he's brought me through things that I truly never thought a human would see on this earth. It does allow you to know that he can do all of this and more.

I've had the same questions asked of me. Why is he failing me? He is not. Why does he keep adding more?...etc. So i do know what you mean. I see it alot a pregnant mother, the carrying period is trying and the labor is hard. The delivering is brutal but then there is joy. Sometimes life seems alot like this to me. Also i do agree that it is to teach us. How do we grow? We certainly dont strive for  truth's when all goes well , and we (or at least not i) are not so apt to have the compassion for another's suffering until you've first borne some. It gets very hard as things seem to multiply and add upon themselves. More all the time. Im here though? This is also proof that he can make whom he wishes to stand. I will not fall as long as he holds me up. You've been through alot and singing the hyms, i do that at home sometimes. Blast them or put on the Gaither's and cry and sing lol....I'm very thankful that he brought you around that corner!. Thanks for sharing all of that, are you still actively preaching? Timothy was sick very often, yet Paul knew he would be next.

B'awesome! I definitely would consult your doctor. These diets sometimes arent necessary unless your losing function or spilling large amounts of protein due to CKD. the phantom stone thing i have had as well. I really am not sure. I had the Cat scan too and thought what? How can you NOT find it????...but they didn't. Please do let me know if you find out what your protein and creatine levels are. Sorry your going through another UTI as they can keep the MS flared!!!!! You also want to catch it before it gets to the kidneys. One method is to go on low dose antibiotics for 90 days to prevent the bladder infections entirely. This might be mentioned to you. Bactrim is used alot.

I've begun to have heel pain. Excruciating and have no clue why. It just seem's that things are domino'ing on me. I did complete my stress test and they injected my nerve in the back of my head yesterday for lower nerve type of headaches. I return to all doctor's this week for trying to figure out all results of all tests. Enough to consider a job. I'm feeling like the time i DO have here is being taken up in appointments. I'd like to have a few weeks away from doctor's to simply get my mind off of new tests. I'm running out of veins. I'm a hard stick anyway.

Best to all of you. I've been waking up with hands numb and pins and needles in right one, doesnt seem to be leaving til around midday but at least it does seem to leave--so far.

thanks

use what you have today..........while it's called today! (smile)

kiera

Posted 3/19/2008 2:02 AM (GMT 0)

Kiera, thanks for the advice on the kidneys, right now my GP's got me on Levaquin, it does double duty for me to knock out the UTI and chronic sinusitus.  But when I see her in April I'll ask about the Bactrim for a  low dose deal, that might do the trick since this is repeating itself now.

I"m in the waiting game waiting on my MRI results, the radiologist ordered additional MRI of the lumbar and overlap of the thoracic... in the meantime everything's status quo. I just know more why now.

HL, thank you for sharing so much with us... it is my faith that keeps me grounded through everything I've been thru and everything I'll ever go thru. I cannot imagine a moment without knowing He is beside me every step of the way.

Posted 3/19/2008 2:48 AM (GMT 0)
Deb and Deb ;)

I can't hep but jump in here and say i appreciate u'r willingness to share u'r beliefs. I agree...i can't imagine going thru anything in this life without Him and am thankful for His ever present care and blessings. Keep holding Him close and know that u are in the best possible hands.

Kiera

Hang on to u'r faith and let Him lead u in this and all things...u will never go wrong!
Posted 3/20/2008 11:10 AM (GMT 0)
Thank you Rhonda,

Glad to also know b'awesome that youd consider the mild dose anti's because the prevent and it will help keep your kidneys safer, linosipril (spelling) is a great ace inhibitor that also helps "protect" the kidneys from damage, you might want to look that up when you decide to talk to doctor about low dose. Great combo for kidney infections!


I do hold onto my faith and wow has it paid off, ill be posting on what i feel has been a miracle this past week. Title of thread will be Ms Persons need to know what can Fool Ya!


Best to all and keep the faith!

kiera
Posted 3/20/2008 11:36 AM (GMT 0)
Thanks Kiera, will note that with the docs ... my mom used to have to take lisinopril but I forget for what...

looking forward to your post!

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