SUELYNNES2   3,705
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kidneys failing, ugh, never thought what started as hormones would end up like this.

Friday, February 01, 2013

Well, I have dropped from a stage 3 to a 4 in less than 3 weeks. My docs feel this is terminal. I have had many opinions and as a well educated nurse, I have to agree with them. I am ok with this. Called the attorney handling the ssdi appeals council. he will be getting a letter this week from the doc showing I am terminal and my crappy labs. They will try and expedite before I die. I don't want my husband stuck with these bills. I worked forever while sick and because I was so sick, the savings went a long time ago. At least if they clear this, I can pay off the debt and take care of my funeral stuff ahead of time.

I am not afraid of dying. I am afraid of what will happen to my husband. We are sooo close. I don't want him following me before his time. Our friends will try and intervene. They have been awesome. I really appreciate the prayers and support from here. I am glad you don't mind me writing what I am going through while I am making this journey. Diabete Mellitus is easy compared to Diabetes Insipidus. With DI you lose all your salt and water. You can drink constantly and be dehydrated. I am supposed to take in a ton of salt, but that only works short term. The salt does lessen the muscle cramping. They are horrendous. The ones you get from low potassium, calcium and magnesium are nothing compared to the ones from low chloride levels. I just tend to scream until someone brings me a cup of chicken bouillon.

Any way. I will keep posting while I can. No one knows how much longer I can tolerate this so I will take it as it comes. I am not a candidate for transplant so I will not do dialysis. No sense in that if there is no chance of a transplant. Why make myself and my family miserable.

  Member Comments About This Blog Post:

JUDITH316 5/10/2013 4:07AM

    Dropping by to say hi and lend you my support, love, hugs and prayers, just want you to know you were being thought of today and kept in my thoughts & prayers.. emoticon emoticon emoticon

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JUDITH316 2/3/2013 11:38PM

    Want you to know I'm here supporting you and keeping you in my prayers! emoticon emoticon emoticon

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JUDITH316 2/1/2013 7:05PM

    I don't know what to say, however, one thing I want you to know is that I really care and will keep you in my constant prayers. I am trusting God for a miracle, for healing and restoration. God's Blessings my friend, please keep in touch..Love and HUGS.... emoticon emoticon

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still losing but coping

Friday, January 25, 2013

Well, my endocrine has become very aggressive and that is ok with me. I am so short of breath. I have drastically cut my carbs trying to control these sugars. Man am I ever carb sensitive. When did that happen?? Probably at the same time my pancreas took a nosedive. I guess I could always do Atkins for a while. It definitely can't hurt me any more than I am already hurt. The alpha lipoic acid is kicking in on my nerve pain and helping reduce it enough for me to cope with it now. YEA! I will take every blessing at this point.

I appreciate all the support. I have never found anyone else who had no working endocrine systems so it is hard to tell if this is normal for what is wrong with me. The T3 the doc started is working. I feel a little tiny bit more energy. Of course, my body temp still won't go above 97 so I would venture a guess that my metabolism isn't going to turn back on. I just need to keep helping it where I can.

I am taking my dear hubby in for a knee replacement next month. Can't have 2 of us not functioning. He is getting a very small taste of what it is like to be in pain all the time and I must say he has become much more sympathetic. He has always been there for me, but I had the feeling lately, he was getting worn out trying to deal with everything I am going through, so this should keep his mind on himself for a little while. LOL! Gotta love him.

Well, I am going to keep hanging in there no matter what. I wish someone would pull Social Security Disabilities butt out of there &^*^ so my stuff will go through. Some idiot there actually thought you could fake endocrine failure. Give me a break. I have 52 pounds of medical records in just the past few years and they just don't get it. I guess I need to buy them a coloring book and some crayons. It is more their level.

  Member Comments About This Blog Post:

GRANDMABABA 1/25/2013 10:47PM

    Hope you both start feeling much better.

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4KWALK 1/25/2013 7:23PM

It sounds like you are going through some very rough times right now. I don't know what you are experiencing but I do sympathize. I hope the paperwork will go through quickly re Social Security Disabilities.

I have thyroid problems and I am never warm but I don't have any pain and for that I am very grateful.

Also I hope your husband does okay in surgery and is able to recover quickly. I'm sure he will understand more fully about what you are experiencing after that surgery.

I just hope you have some of your problems allievated today and you can enjoy sparking for awhile. emoticon

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losing this game

Monday, January 21, 2013

Well, the renal guy has decided to put me on comfort care only now. I can't fight the anasarca without the endo finding a way to balance the hormones enough to help me keep my salt levels up. I have heard two birthdays in a row that I would not make it to the next, but for some reason I believe them this time. Something is going to have to change drastically in order for me to survive. Even still, I find myself unable to stop fighting. God give me the strength to keep going.

  Member Comments About This Blog Post:

HDHAWK 1/21/2013 6:19PM

    Bless you. emoticon

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TIME2BLOOM4ME 1/21/2013 6:09PM

    emoticon I found a Dr. who might be able to come up with some good ideas. She does phone consults for free. Let me know if you want to speak to her. emoticon

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TOPS-TORTOISE 1/21/2013 5:33PM

    I don't really know what to say. Reading entries from your blogs has put things into the perspective for me. I've gotten off to a slow start this year due to a knee injury. I torqued the MCL when I slipped and fell while stepping out of the shower. I've been using crutches, taking prednisone for swelling, and oxycodone for pain so I can sleep at night, and I haven't been able to exercise how I would like to. My doctor wants to have an MRI done if it's not any better in two weeks. I've been feeling sad discouraged. I don't need this when I'm trying to eat healthier and get into the habit of regular exercise again.

I really don't have anything to complain about, it's just my knee and with care it will get better. I am so impressed with your resilience, your strength and your will to survive. You must be a very strong soul to deal with all that you are going through right now. Ecclesiastes 3:1 reassures us that there is a season and a time for every purpose under the heavens. We struggle wondering what that purpose is. If we put our faith and trust in God eventually he will reveal the purpose for the trials that we go through in our lives. I will keep you in my prayers.


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    God willgive you the strength you need to face this crisis.

Make Today a Great Day and tomorrow will take care of itself when it gets here.

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Steroid problem can get worse, who knew??

Tuesday, January 15, 2013

Well, the other half of my adrenals crashed so now I am on both steroids, I had to start T3 for my thyroid which is making none and converting none of the T4, started on several insulins because I am now considered a type 1. Apparently my pancreas went on vacation and forgot to come back. I am still blown up like a balloon but starting to drop. We shall see. If I get below 300 I will know the T3 is actually working and nothing else is interfering with it. The salt problem was due to the other half of my adrenals crashing, so hopefully with the florinef that will also improve before it takes out the rest of my kidneys.

I am not allowed to do any exercise except sitting aerobics, so PT suggested I get one of those cycle things you put your feet in from a chair and put it on a table and use it with my hands instead. WOW. It works. And the best part is I don't have to worry about passing out. The adrenals are so unstable right now that I pass out after a few minutes standing because my blood pressure takes a dive. Who knew this could get so complicated.

My cpap mask is driving me nuts so it is time to look at a different style. I am used to wearing it so with the right one I might actually sleep. Wouldn't that be novel. Well, that is my update. I am hoping I can focus a little now and at least level out a few problems. Hope everyone else is hanging in there. Oh yea, the ENT put tubes in my ears and I feel like a new woman, at least at ear level. LOL! I love the fact that they actually clear now and don't constantly pop and squish.

  Member Comments About This Blog Post:

MOMMATOO5 1/15/2013 2:56PM

  Wow, what a ride you are on! Hoping you are able to heal your adrenals. I am praying that I don't end up on insulin before I heal mine. God bless you.

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steroids making renal worse??

Monday, November 26, 2012

Well, I am almost to stage 4 now on my renal failure scale. UGH. It doesn't matter what we do. I will not do dialysis as I am not a candidate for transplant due to my disease, so if I hit stage 5 it wil be bye bye. This is starting to scare my husband, that and the fact that the fluid builds so fast I just can't breathe, but according to labs, I am not in heart failure. According to common sense, I am. That is my cardiologist speaking. Most don't know how to deal with this when it is lack of hormones causing everything. In addition, my husbands oldest sister and youngest sister are both dying. One is 78 and the other 54. It just seems so wrong. I am the one who really should have been a goner a long time ago. I don't understand this at all.

My faith tells me it is not up to me to know the Lord's purpose, but usually it makes some sense. I am finally feeling a little scared for my husband. I am ok with this, but seeing him suffer is making me feel so bad. I know it shouldn't, but it is. I hope i can work through this.


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