Sunday, April 22, 2018

SuiHopeless




A HELL of a YEAR!!!!

Hello everyone. I have not written in a while and this year has been the mother of all years with health issues. I can honestly state that I experienced a bit of what hell must be like.
 I am pulling out now and never want to see this again, so I have some strategies in place for my protection.
 First let me tell you about the year. It involved far more then adrenal insufficiency, but ultimately adrenal insufficiency is what was injured the most in the end.

SEVEN MONTHS IN BED! WOW!
 I was in bed seven straight months and found out that the weaker your body gets, the worse your adrenal insufficiency can affect you.
 Here is what happened.
First I came down with the flu. I was sick for a few weeks with that and then a stomach flu. I stress dosed alot for it. I started having crisis after crisis and didn't understand why. I finally put myself on stress injections around the clock at the amount that I was taking daily, but every two hours to get myself evened out, according to my circadian rhythm. I was on close to 300 mgs of hydrocortisone.
That stopped the crisis' but I now had cushings syndrome which had it's own little complications.
I was weak, could barely walk and my potassium went into a free fall.
  I was in the ER at least four times due to that and twice they gave me IV potassium. It affected my heart and caused it to do some funny bumps.  That was uncomfortable too. 
It took me two months to reduce that dose to my normal dose, but I did make it, yeah!!
 Right about the same time this all happened, I got serious pain in my back.  The only way to avoid being in this horrendous pain was to lay in bed in one position.  I could not move at all, or I was struck in both sides of my back like knives going in.

Back arthritis Now I am a drug seeker?
 I went to my doctor and they diagnosed it as arthritis and sent me for an injection. That did nothing for me and the pain lasted about three months. I was on crutches if I had to walk at all or I used a rolling walker.
 I got these spasms at times that were so severe I landed in the ER for pain meds, because regular pain meds I had would not touch them. In fact as I sat there in the ER waiting for help, the pain was so bad I contemplated that if no one would, or could help me, that my life on this earth was over, because I just could not take that pain. It was as bad as giving birth!  I had to breath!!!

Dilaudid my friend.....
  I was always given an injection of dilaudid and that worked every time. I would go home, go to bed and sleep. That stopped the spasms every time.
 I finally got a pain med doctor because my primary physician could not give me pain meds. Well regular pain meds simply did not work for me for some reason, so staying in bed it was. That was my only relief.
 The ER was beginning to get suspicious of me that I might be a drug seeker. I wasn't. But I had no other recourse for this pain. It was very scary.
  That isn't the only thing that sent me to the ER at that time. I got a stomach infection from injections and then blood clots from laying in bed
 I was a regular at that place between back spasms, low potassium and all these other fun things. I think I was there close to 20 times in two months!!

GOT THAT ONE HEALED AND WHAM! HIT AGAIN!
Well that started to heal and I went overboard I guess with doing some things and WHAM!  I got back pain in my lower back. 
 The new back pain caused me some new fun issues.  I felt like I was being strangled by a giant snake entirely around my ribs. That sent me to the ER OF COURSE!
 I now asked for an x ray since this new pain was lower and not related to the other pain. They informed me my entire back had arthritis etc. and later my pain doc read the report from the CT Scan that they gave me, and informed me that I had two ruptured disks. Oh goodie. When did that happen?
This new pain started in December and I didn't get out of bed until March.  So from the beginning which was September, I spent a total of seven months in bed.

Adrenal crisis' again!  Sigh!!
  Well in December, I started having adrenal crisis again and often it seemed for no reason. If I just walked down the stairs, well there you go.
 I went to my back doctor and had a crisis in her office.  I figured out that I was just simply too weak to do anything by now and my body wasn't dealing with anything without a crisis.
I had a toilet by my bed and I could barely walk from my bed to that toilet and back to bed. That was the extent of my energy and ability.
 Even though my lower back was beginning to heal and I was left with weakness where the disks are and not pain, I still could not function due to my adrenals.

ANXIETY???? WHO NEEDS THAT?
 Then I started having anxiety and total panic type fear. I felt like I was locked in this prison of my bed and may never get out. The TV and Facebook were getting really boring and old and I would lay there and stare out a window and cry half the day. I was terrified for my life. I began to tell myself that this is hell and at least it isn't as bad as the real hell that I might land in, if I took my life!

BUT DEPRESSION WAS NEXT...........
Soon I became very depressed and wanted off this planet pretty bad, but at the same time I really didn't want to die. I just wanted to be out of my circumstances that I woke up to every day.
 I tried taking extra steroids to prevent the crisis' that were taking place, as I was having at least two a week for three weeks straight.  I could not even stress dose. Something went wrong with my body and extra steroids were causing me to have more anxiety.  If I got low cortisol, I also got anxiety, so it seemed no matter what I did, I was dealing with alot of anxiety and on top of that the real fear of living like this, locked in my bed for life.
The FEAR was crippling!!

THEN I WAS SUICIDAL OR SUIHOPELESS.....
 I had very few that I could talk about this to. If you tell someone you feel suicidal, they want to lock you up.  
I had one friend who  I emailed and she always eamailed back with encouragement to me in the Bible and I had another friend who came and visited a few hours once a week and we talked.
 Both felt God was going to lead me out, but I felt God had abandoned me completely. I have never felt that way before. Even when my son died, I didn't have this much pain  towards God. I just asked Him why He left me in this agony?
 I resigned myself to living in hell the rest of my days on earth because even though I was suicidal, I knew I would not take my life. I was too afraid I would land in real hell if I did. That is something you can't take back.

God finally speaks!
  Then one day I heard the Lord say start sitting up. I didn't obey that word right away. I tried other stuff and kept crashing, not a crisis but low cortisol that is also painful. 
 Finally one day I decided to get out of bed and just ride with my husband in the car, to pick up our grand kids. I was in that seat an hour and nothing happened to me. By this time I had spent three weeks in bed without a crisis happening so I felt at least that much stronger. But I just didn't do anything but get up to go to that toilet. My husband was cooking and caring for everything I needed.
 The next day I rode again and this time we had errands to run, so I was in the car two hours. I didn't crash then either. That was a huge victory.
 I joined a group of Christian people on facebook that all were struggling with health issues. I asked for prayer.
 Someone sent me a PM who also had gone through a similar situation as I had and she wanted to send me this special water called ASEA that helped her get out of bed.
 I got on it and I know it must have helped. A week later I got a wheel chair from a church that loaned out this stuff. From then on, I just started sitting up all day long instead of lying down. That was a victory, but I was still very depressed and still felt suicidal at times. I hated my boring life.  I had no motivation for anything most of the time.

So I decide I need to fight!
  The next thing I tried was to do a mild 20 minuted dance in my wheel chair. I would put on some oldies and move. That is about all I did was move around in my wheel chair and do a few butt crunches as I knew that was good for my back.
 I tried to do that daily and it made me feel better for a bit. But the battle with depression continued.

Be careful about telling the world you feel suicidal..
Well one day I posted in my new group that I was trying to figure out how to take my life and not go to hell. It was a vent. I wasn't looking for attention and I was not planning to really take my life. BUT it got me in trouble and reported to the admin. I was contacted and informed that I could be reported. The woman was kind to me, but I was very upset and embarrassed. It made me realize that you cannot talk about suicidal feelings anywhere without risk of being reported and locked up.

I decide to speak up!
  The next day I spoke in three other health groups about this issue. People crawled out of the woodwork who were hurting and felt this way but didn't really want to take their lives, but also knew that it was a total taboo subject to talk about anywhere.

Why it is bad to discuss feeling suicidal....
Ok why? More people can be saved if allowed to talk about it and most that are suicidal don't really want to die. They want out of their pain and don't know how to get there and talking about it is the best therapy for it. It can save lives.
yet the world doesn't want to let people talk about it. The words suicidal means self and kill.
So it means to kill oneself.
So I coined a new term that might not scare the world. SuiHopeless.
It means Self Hopeless.
If one is hopeless they need to talk about it and others can listen and encourage them and give them hope. It could save lives.
We as a society are actually killing people by not allowing them to talk about this!

But we need to change this!!
But we don't realize what we are doing. We just pounce on people who are suicidal and tell them to call the suicide hotline. We can't be responsible if you take your life. OMG that is so wrong!
 We cannot shove these people off the planet. We need to support them and help them live. A suicide hotline isn't going to help a person who lives with these thoughts day in and day out. They can't do anything but possibly avert a crisis for one night.
And the ones that probably end up taking their lives are the ones that don't talk about their pain.

I am finally walking out!
  It took a couple more weeks for me to pull out. I am now finally in physical therapy and my depression is gone. My hope is back. I am sure not over this and have a long ways to go to get my body strength back. I still have spine weakness and use crutches and a wheel chair. I still hate TV and facebook for entertainment most of the time, but now I get out as much as I can.
 I am trying to figure out where I might volunteer to do something that will just get my away from my house and my TV and computer. I need to be out with people. However I don't want to be out with sick people due to adrenal insufficiency. So I am praying where that might be since about all I am able to do right now is sit and talk. :) 

Although I still am PTSD, I have hope now!
 I feel a bit of PTSD about all that I went through still. I don't like the feeling of looking over my shoulder to see if something else is trying to come after me.
 I am back to my hope in the Lord and trusting in Him and believing Him for answers to bring me completely through this.  

People are afraid of sick or depressed people.....
 I now have great compassion on people who suffer in pain and sickness daily.  Sometimes I think the world in general runs from people in these places.  No one wants to come out of their comfort zone. 
  It is rather like the grief I experienced when my son died.  After a while I lost friends because everyone thought I should be over it. I made them uncomfortable sharing my grief. So I stopped. 
 I keep it to myself now. 
But I really don't think it should be taboo to discuss when a person feels suicidal. It is though. The world gets scared of it when someone says they feel that way. They some how feel responsible if the person followed through. 
We really can't keep people alive and we are honestly going about it the wrong way!

SuiHopeless!! A new way to present how we feel!
 So I created SuiHopeless as a term that describes what most of us truly feel. We don't want to die. We just don't know how to make it through our pain but being allowed to share and talk about it is one way to get through it. 
 I don't pretend to think I can really change the world's thinking with one new term, but  I do hope that it does help someone.
 I want to write a book about this with the title SuiHopeless
I don't yet feel ready to fill a whole book though. Although this blog is close to one. lol.
  I will share my blog in groups and hope it can make a difference for someone who is dealing with this.
We need hope when we are in this place and I now feel that I can give that to someone, at least by listening. 
Thanks for reading this and spread the word to anyone you know suffering with thoughts of suicide. 

What are my strategies to protect my future?
Ok I started with that idea, so let me elaborate on it.
First I now know that I must stay in shape as best I can. This keeps my back strong and can protect me from the arthritis in the first place. I have spent way too many years with adrenal insufficiency and not worked my body out due to fatigue. Well fatigue or not, I need to build my body.  I must.
Second, I feel a strong need now to get out and be around people. Being home with nothing to do actually lends to my fatigue.
Third, I am praying and confessing God's word about healing. I plan to fight the enemy of my soul as hard as possible to stay strong in the Lord and keep away the attacks.  For those of you who are battling chronic illness, God's word has promises for us. I would rather try them out, then not. It is about my logo. Reach for the stars and if you land in the clouds, at least you are off the ground. 

Life isn't perfect but......
We are not promised perfection on this earth and for some of us the ultimate healing is heaven. But for me, I am going to try to bring forth at least some of it right here on earth. I won't give up.  
Many prayed for me and God heard and He answered. They didn't waste their prayers either. There is hope. There always has to be hope. If I had taken my life in the midst of my pain, I might not have seen the fulfillment of the promise that I am now receiving. The promise is from God that He bore stripes on the cross for our healing and there are many more in the Bible about that. He promised me to see the goodness of the Lord in the Land of the living. I am expecting to see that!!!  He can take all things and make good from them! 
Terry Quinn



Wednesday, April 5, 2017

Pulse Life and DEAL with GRIEF!!




Two serious Crisis in ONE MONTH! 
Lessons learned!

This month has been extremely hard on me. Many unforseen things have landed on me to cause me emotional grief. 

Learn to PULSE LIFE!
Then also, is good and exciting things that  have happened, and I over did it. 
After 15 years with this illness, I have not totally "got" how to protect myself from this weakness.
Number one, I always need to be mindful of how much I do, or over do, and rest in between. I need to pulse my life so that it doesn't take me down. Most of the time I am able to do this. Sometimes I get so OCD about stuff that I continue to hang on until things are done, and then I have gone too far.
So learning to "PULSE" is truly a golden rule that I must stick with.

Managing Emotional Pain!
Second is emotional grief that is much harder to control.  Stuff can hit you from all four corners of the earth and there needs to be some sort of dumping ground that clears that out so it doesn't get carried over.
 But this month, I didn't dump. No I did not. I pulled it all in on me and chewed on it like it was some kind of food I had to eat!!
I suffered from this so badly that I nearly could have died or worse, stroked.
Here is how it went down. 

DON'T OVER DO!!
The first episode was partly my OCD that got involved. I am working at a new business that I love. I am sewing and embroidering and creating items for sale and for fun.
I got involved in a project that I could not put down  and wanted to see the end. So I spend 7 hours one day sewing and other days many more hours. It didn't last long before that took me out. I am not well enough for that amount of labor. I am in bed way too much with this illness and still not really able to exercise much at all. 

Family stress needs to be nipped in the bud!
And friends can be dangerous too!
 So on top of that there were some family stresses and when my kids are angry with me, my heart is torn in two.  Then to add insult to injury a friend walked out of my life. A long time friend and I didn't understand that. There were more things that went down but I am putting the highlights there.
I grieved over my lost friend, my kids anger and all the other little things that were hitting me. All the while, I am sewing for hours.
  I started hitting bottom each day and having the shakes but I ignored it and took solu cortef stress doses.

It hits fast!
  Four days later it came on BIG BIG BIG!  WHOA right out of the blue, suddenly it was serious. I was taking 25 mg injections, one at a time to test how much I needed until over a two hour period, I had 100 mgs and I still was not even close to out of this mess.
 I sat up and all of a sudden my body went totally numb all over and I didn't feel like I was in this world any more. 
 I always check my BP to see where I am at with cortisol as that is a great measure for me. I shoot up some when I am low.
 I went to check and I was not just up, I was way in the danger zone. Well over 200/\over 110.  I turned to my hubby and said "I think something is wrong! I am having very high BP and this medicine is not working."
 Then suddenly just like that, I turned my head and passed right out. I saw the dark for only a few seconds though and put myself right on the floor. I could not move or lift my head for I would start to pass out again.
  That has NEVER ever happened to me in my life and was a very creepy experience. As I am laying on the floor, I am wondering if I am having a stroke? So I tell hubby to call the squad. 
I know he cannot carry me to the car.

The Hospital is adrenal insufficiency DUMB!
The squad came and found  my BP even higher still. so they run me off to the hospital.
While at the ER I was NOT given steroids for my crisis OR fluids. They simply looked at my high BP and admitted me to watch that. They felt steroids and fluids would raise my BP higher but no, both of those things lower my BP because they take me out of the crisis!
They left me in a crisis for an entire night because no one is educated in the medical world that HIGH BP is part of a beginning crisis. So I got alot worse before I got better.
 Hubby brought me syringes and meds in the morning and I took care of ME right there. 
Then they gave me blood prssure meds and I finally saw a doctor at 1 pm the next day. I tried to tell her the danger she put me in, but she argued with me and it was of no use. I signed myself out and came home. She didn't even send me home with BP meds. I will never darken the doors of that hospital again and they are lucky that I did not die or stroke!
  So I came home and took care of me for a few days until I could function again.  And you won't believe this, but it hit me all over again just a week later!

My beautiful dog died! and the 
MEAN PEOPLE FLOATED IN!
 My dog died on Monday. Her story is complex but we had to have her put down. The pain of bringing a happy dog to the vets and killing her, about took me out!
 I cried and grieved for days about this.
I could not over come this and really didn't realize how dangerous even this was, for my adrenals.
Then came the mean people on facebook. I just happened to run into a few situations that are all too common where people think they have the answers and slap their opinions and anger on others. For some reason that was a bad week for those situations. I got a few that hit me. The pain got worse on top of my already horrible pain over the loss of my dog.
 Well by thursday  I thought that I was getting over some of that. I did some cooking and errands on Thursday and on Friday I went out to have eye appointments with my daughter, and hubby, and  I felt ok. sigh............

I was not ok but felt ok?
  So how does one feel ok but the body under it, is not?  Well I guess that is how it can go down because on Saturday morning right out of the blue, I suddenly went into a crisis. Shaking and sick and that high BP all over again. This time I knew there was not going to be an ER. I knew I had to handle this myself, so I did. 
 It is now Wednesday of the following week and I still can't get out of bed. I am weak and worn out, but my steroids are closer to normal with a bit of stress dosing now. This just took alot out of me and I am yet to know how long I will need now to recover.
  So what am I doing now to prevent grief and emotional stress?
I must have a dumping ground. Things that normal people can deal with, I cannot. Those things are dangerous to my life.
 I must protect myself. 
Mom is not the strong one. 
So I have chatted with my children. I have asked them to not hold anger towards mom for things. I don't ever want to hurt them and will be the first to apologize, but let's communicate instead of being angry with mom. Kids think mom is the strongest and can take all their feelings. But a mom with SAI honestly is not as strong, as she once was. Yes I am always appearing strong to them, but my body is saying otherwise. My kids are all adults. We can do this!
  So we have to mature here and try and just be more kind to one another, so that my body doesn't react. I hate that in a way. I don't want to appear weak to my kids or fragile in any way. But hey, I have to be smart here and do what it takes. No one wants to be caring for a stroked out mom and I am not allowing that to happen to me. I must stand strong against that, so that my body weakness is watched over  by my mind. 

How to handle grief?
STRESS DOSE!!!!!!!!
  Next is how do we handle serious grief when we have AI?  Gosh I hope I get that one figured out. But one thing I do know is I didn't stress dose enough for it. I didn't notice the need for it. When adrenaline is running high and emotions are strong, it doesn't allow you to feel weak or tired or shakey. It somewhat keeps you feeling like you are ok, under it. But now I see I was not in the least bit ok. I was in very grave danger.
  So stress dosing is so important in emotional grief, whether or not, you feel the need.

Find a dumping ground!
Next is the dumping ground.  When people are being mean and rude, find a friend to vent with. Dump that pain somewhere else. Don't carry that pain. Maybe not all of it can be dumped. The rest simply needs steroids.

Taking angry and hurt thoughts into captivity.
Let it go. Let God and Forgive!
Third is taking thoughts into captivity. Do not dwell on these people and the issues. Cast those thoughts out of your mind and pray to God to help you put in good thoughts that are healthy for your body. Turn over the people and their issues to God and pray for them.
  Don't carry that pain. It is very hard to do this and it is an exercise in discipline for real. 
But it does work. I know it does. My son died three years ago and I have had to see him alive instead of the dead person I found. I have had to force my mind to see him beautiful in heaven. If I dwell on what I found, it will take me down.  So I force it. I think on those things that are good, righteous, holy and pure and  beautiful.  Not on those negative painful things.


Journal about it. Give it to God!
Fourth, I have started a journal. I am journaling my days and what goes down. I am journaling how much stress doses I take. This way if I see myself going many days of stress, that is a red flag for more steroids and slow down to heal, instead of keeping on walking right into the lions den to a crisis.
 .

Share your journey with me how you stay away from a crisis? 

I am sure others will have more tools that I can incorporate into this package
I would love to hear from you on how you cope with the grief, over doing life and the emotional upset that comes from strife with others.
  God bless you all in your walk through this daily challenge of staying alive and safe with adrenal insufficiency. 
 Learn to say no. NO to too much doing. NO to people who want you to be involved in this and that and NO to their meanness. PULSE YOUR LIFE!!
Walk away from the mean ones. Shake the dust off your feet. 
Vent with a friend and pray for them. Don't carry their meanness with you.  Don't carry grief. Take thoughts into captivity and think good thoughts. Keep a journal. Stay safe!





Terry Quinn

Saturday, May 7, 2016

Taking my emotional cortisol temperature minute by minute is exhausting!




The daily roller coaster:
My cortisol pump has settings to give me cortisol according to my circadian rhythm.
 All well and great, as long as my day doesn't contain any additional stress. or physical activity.
But that is impossible!
So most every day, I am checking and rechecking to see if what I am about to do is going to need more cortisol and how much. OR if what I just did without adding cortisol. or enough of it, caused me to back slide. and now I need to catch up.
Catching up isn't that simple and can usually send me into a day or two in bed feeling miserable.
I pay dearly for any amount of fun activity, any shocking news, any argument with anyone, any mean hateful words spoken to me, bad news, good news, excitement, exercise and you name it. If it takes adrenalin, it costs me cortisol. If I don't pay the cortisol, I pay with a crash. If I don't fix the crash, I pay with a crisis. If I don't stop the crisis, I pay with my life.

I am responsible for my very life:

Totally, daily, minute by minute, I am taking my emotional cortisol temperature to see if this situation needs more by bolus or injection.
If I take too much, I will have weight gain, anxiety, feel hyper, fluid retention and general irritability.
If I don't take enough, I will have anxiety, irritability, general anger, emotional outbursts, cry easily, feel weak, tired, exhausted, nauseated, and depression not to mention suicide thoughts that want to take me off this earth.
Staying in the middle takes constant checks and deciding how much to give myself via bolus or injection. in order to be ok.

It is like being on duty 24/7 365 days a year without a break ever:

I can't ever take a break from this constant monitoring. If I do, I slide downward. My husband can tell when I have slid and he will ask me if I need cortisol.
Everyone expects me to be emotionally sane. as I am a mature mom who raised nine children. I should be this calm together individual who doesn't have a care in the world now. I am retired.
But no, my life was stolen 15 years ago when adrenal insufficiency hit. I haven't had a chance to live that calm simple life. Now I play nurse maid to Terry all day long so that I can keep my sanity and have enough energy to do a little bit in life and not live in bed all the time.
That has proved dangerous to me because I nearly died of blood clots in my lungs last December. I have to move. Moving takes cortisol, but how much?

I am an experiment every day:

Yes I am this test tube. Let me see, I am going on a motorcycle ride. I think 15 mgs extra injection will keep me going. I inject 15 mgs and go. I run around a couple hours and I come home and all of a sudden I am out of gas. Not in my bike. But in my body.
 I realize I didn't give myself enough. So I inject 15 more, but it is close to bed time and that could keep me awake all night. or it could help me sleep. Let me see if the test tube is working. OH no it ran down my leg after I injected it. I have to do it again. So I do. Now I am suffering from the anxiety of too much and I can't sleep.
  I have broken more then one test tube with my experiments. 
In fact I break one almost every day. as no two days are the same. and nothing seems to match. 
It truly depends on the condition of my body when I take that dose whether or not it will be enough, too little or too much. 
 Weight gain has been gradual since this started and 100 lbs have crept on me little by little of the 15 year period. I didn't eat too much food. I just had to spend way too much time in bed not doing life and gaining weight and too much cortisol at times adds to it.
  I can't live in the land of not enough, or I am suicidal and angry at the world. I can't live in the land of too much or I am gaining weight, irritable, hyper and want to eat too many sweets.
 So every day I pick up my test tube and take my emotional cortisol temperature minute by minute to see if I am in the zone.
 The job takes energy all by itself.  That word energy. That is all I am trying to achieve. Energy to do life, not over do, not under do, just do. 
This job was created for my body to take on naturally all by itself. If I had a working pituitary, that would happen and I could live each day not concerning myself with all this emotional cortisol temperature. 
I want it back. I want me back. I want this healed. I pray to God that a miracle can happen and my body will do the job it was intended to do. 
I don't want this job. I want to live a simple happy peaceful life. This roller coaster is awful and the outside world doesn't understand me when I am not in sync. 
Lord let me be healed or show me how to operate this ride. Thank you!! 



Wednesday, December 30, 2015

Surprise your lungs are full of clots!




I asked him three times. ARE YOU SERIOUS?

Are you serious? I asked that doctor three times over.  I really have blood clots in my lungs??  I am sure he thought I was nuts to ask him the same question three times over, but I could not believe it.  I didn't feel anything in my lungs. It was my leg that hurt.

 I had woken up two days prior with groin pain. I thought I must have pulled a muscle in my groin or hamstring.

Hubby had painted the stairs and done every other stair so we could skip one, and go upstairs.  I had to stretch to skip that step. I just knew I pulled my muscles doing that. But boy I felt I must have been in real bad shape to have this much pain!

That night about to go to bed, sitting on the toilet, I noticed my knee felt numb. I felt around my knee and down to my calf and OH MY GOSH! It was all swollen and hard as a rock!

 I have had a previous blood clot and I knew.  I was too tired to go to the ER and just hoped I was wrong. To be on the safe side, I took an injection that I had left over from my previous knee surgery.

 I took that and went to sleep.  Honestly part of me didn't care what happened to me. Since losing my son two years ago, I have not feared death at all.

 Well I woke up alive and even though I asked for prayer before I went to bed,  that it was not a clot, it was still there.

 I didn't have health insurance and I had stated that I would not ever go to the ER unless I was dying, but I knew I had no choice now. It would have been suicide to not deal with this.

To the hospital insurance or not!
 So I went in. Mike dropped me off and sure enough they found a blood clot. Not JUST a blood clot. My entire leg was clotted from top to calf.

 I had been in bed alot since we had been in a car wreck that gave me whiplash and shocked my body. It had given me a slight adrenal crisis and now it had caused a blood clot.

 It didn't end there. They put me in the hospital and tried IV's but my veins would not cooperate. Years of being in bed shrinks the veins. Thank you adrenal insufficiency.

 The machine beeped all day long, about every five minutes,  because my vein kept occluding the IV.

I was miserable. My back and neck hurt from the whiplash. I was swollen up with hives due to the stress on my body, my leg was in bad pain and I am certain I was dehydrated. The hospital didn't listen to me when I told them that, because they were not treating my adrenal insufficiency. So they paid no attention to that.  They gave me heparin to thin my blood, but no fluids.

 I thought I was going to fall apart, but a big part of that was my adrenals were dipping and I didn't realize it.

I WAS MISERABLE!
I cried out to my friends for prayer. After that someone came in with a sonogram machine and found a better vein. They gave me ice for my hives and I actually fell asleep. The next day I woke to the same mess though and that is when they gave me a catscan and found my lungs were full of clots too. One very large one was in a main vein.
 
Again, not afraid of dying, but I didn't want to do that to my kids, at Christmas.

They released me on injections Christmas Eve,  but two days later I was back.

Back to the ER! 
NO ONE gave me any info about all this. They just let me go.  They had told me in the ER that they were going to bust up the clots in a surgery. They didn't do that.

 People were telling me the clot in my lungs should have been clot busted.
I had terrible pain in my legs when I walked. No one had told me to limit any activities OR how long this pain could last. They didn't even give me any ideas to help the pain.  I have since found out that heat does help it some.
 
When I went back in, they gave me the scoop and the dangers of clot busting etc. They explained all of the issues. It wasn't very good news, but now I knew more. My heart was swollen from trying to pump blood into my lungs. I was concerned about that, but a test taken prior to my leaving the hospital, showed it was acting normal, even though it was under stress.

Why couldn't doctors have given me this info before I left?  Honestly living with AI, I find hospitals to be the most unorganized places and their knowledge of AI is really low.

 You have to be an advocate for yourself down here, or you could easily die.

Since I am on the pump, they left me to care for myself in the hospital as far as my AI was concerned. By the last day, I was taking some injections because I was getting really low and battling a migraine.  I left the injections on the table and thought, if a nurse shows up and asks what they are, I will tell her I just got done shooting up meth. (I don't do drugs lol)

 My silly way of being in control when I felt I was so out of control with everything in that place.

Now due to AI, I am at high risk for clots! 
Because of being in bed so much of my life, now I have to prevent blood clots for life. I have this one to heal from and I am trying to figure out how to stay safe forever.
I am looking at different calf pump machines that can make my legs safe on days I am crashed.

I am learning more about Stress Dosing!
Finally I have figured out that stress dosing can help a migraine and it can help my hives.
 I have had to stress dose for days because of this.
My leg is swollen, aching and purple. My lungs now hurt some.
AI the gift that keeps on giving.
My trust is in God always though. He will never fail me, leave me, or forsake me. He will help me prevail.  Back in bed most of the time because I can't walk much.  Trying to keep my attitude positive as much as possible.
If you have AI and are in bed, do some prevention. This can kill you.  Don't take that chance!




Friday, November 20, 2015

The Green Eyed Monster and Thanks Giving





Envy!! That GREEN EYED MONSTER!!!

I sure didn't start out in life planning to live my life in bed.  Thank God that the pump has relieved some of that, thus far.  I can get up and do life.  I still have to be so very careful though because the body is used to a certain amount of cortisol and cannot make any extra if I add "life" on top of normal life for me.
  That is when I can crash and revisit my bed. :(
I am this type A person who likes to micro manage life, organize my house, go and do, and go and do, but no more can I go and do like I use to DO!

Watching the World
It is so hard to watch the rest of the world going here and there and showing it off on social media.  It is my natural inclination to feel JEALOUS!!!  
 How come I can't go and do and show my life off?  Well because I am in bed with a crash due to AI. I did something that was hardly close to as active, as many of my friends, but it dumped me. 
 God doesn't want me to be jealous. I need to be happy for others and grateful for what I have myself.
 Yes that is what I tell my heart, but that GREEN EYED MONSTER rears up and says "Feel sorry for yourself Terry".  "Hate the world for doing what you cannot".  

NO TIME FOR SELF PITY
No it is the most unhealthy emotion possible. It takes you to the depths of depression and ruins your joy.
  I have to work on this constantly. Talk to myself. 
Terry be grateful you have eyes to see so that you can do your art.  
Terry be grateful your legs work and you can get around easily.
Terry you are blessed with two hands that can type and create.
Your brain is phenomenal. You can remember, design in your mind, learn.
God has given me many blessings.
We can always find someone out there who has it better and someone who has it worse. 

Praising God for everything
I have learned that God wants me to trust Him no matter what.  He has a plan for me. No my life isn't want I want in every area, but if I don't stay grateful, for what I do have, I am going to miss out on alot of joy in life, that is not worth losing out on.  It is not worth it to sink into self pity.

Thanks Giving
It is the season that as a country, we are giving thanks.  But we should not think about being grateful only on this day. Every day should be a season to give thanks.
 Praise and gratitude takes the Green Eyed Monster out of our lives and replaces it with a joy that is satisfaction.  One that says, I trust you Lord no matter what, and I am going to live in joy and peace, and not allow envy into my heart.
Thank you Lord for keeping that away for me. I don't want to waste my life with that green eyed, ugly monster. 







Saturday, November 14, 2015

Steroid fear is easing.........




Yes it is getting easier to stress dose!

Well I have now been healthy for a week, and I learned some huge valuable lessons. Stress dosing for two days not only saved my life, but I recovered far faster than the norm.

God created cortisol to mend our bodies, as well as daily gas. It is the fuel for all the hormones in the body.
 I also ended up losing some weight instead of gaining. That makes this girl a happy camper.


AI Is not for the faint of heart!
  Life with adrenal insufficiency can be a pretty bumpy road. I mean how many people are entirely personally responsible daily for keeping themselves alive? 
I know there are other diseases that fall into this category including diabetes, but at least diabetes has some ability to figure out how much medication you need. Blood work. 
Cortisol blood work is in the works though, and when it arrives, it is my strong hope that the FDA will approve injections and the pump so that more desperate people can get this help. Too many are critically
Disabled like I was, on the pills.


Our cortisol needs
 Our bodies create cortisol around the clock. Today's Endo docs expect patients to take one or two pill doses daily and be ok. Hydrocortisone pills last six hours in the body. You get a high concentration to start out, and as those six hours pass, the level in your body wanes down.
 Then if you take a second dose in the evening, you bring your dose up higher than the normal body would make it. This can affect sleep. I had to end up taking other medications to help me sleep and sleep was terrible on the pills.

Then I discovered that I was crashing in my sleep. The body makes cortisol 24/7. I wasn't giving it to myself 24/7 because my doc didn't order it that way.

I was DYING!

Well this was the beginning of AI HELL! I was waking at 5:00 average with terrible migraines and nausea. I was DYING every morning and didn't even know it. This went on for years! I would look at myself in the mirror and see a ghost! Sunken eyes that were dark and no one resided behind them.
 I kept telling my doc how sick I was. He basically listened and did nothing. Eventually he ended up calling my other doc and told him to put me on anxiety meds 24/7.

I was having anxiety but that was not my main problem. Low cortisol will cause anxiety. I was rather zeroed out on cortisol though. It was later that my new integrated doc did blood work on my morning cortisol and almost nonexistent! 
ACTH, that we discovered the problem. My morning cortisol was 1 and my ACTH
 Ok....my gas tank was empty every single morning! How was this body supposed to run? 

 I went to a hormone specialist and found out also that all my sex hormones and DHEA were also
ZERO!  Um this body was so empty that I am literally a miracle to be alive!
 Every morning I got up sick with vacant eyes and I Gulped a large dose of water, sea salt and my hydrocortisone.
Within an hour I began to feel like I could live, but living was pretty rough daily.  I pretty much existed, not lived. I could not do much beyond get out of bed to feed myself and sit or lay down all day. Thank God I had a computer.


"Endo School"

I had already spent a few years in "Endo" school (on my own, online) studying the thyroid issues, and now I was learning about the pituitary, adrenals and other hormones.
Basically I spent about 7 years in "Endo" school total and when I finally had this disease figured out, I was looking out for a doctor who would treat me With the pump. 


Praise God
He led me to the Cleveland Clinic and my current Endo, dr,
Hattipuglo. She saved my life!!  First she put me on injections and I went on them small doses every three to four hours around the clock. So I set an alarm to wake myself at 5 am and took an injection. I also took one before bed. No longer was I waking up close to death.
 The body actually starts rising cortisol a couple hours after you fall asleep. How was my body to sleep normal and wake up normal, when I was flat lining my gas, in my sleep?  It wasn't! I was dying daily!
  As I blog about my pump, I will educate you more and more about how the pump replicates the normal cortisol rhythm that your body makes.


Thank you Lord today for Steroids. They have saved my life. 




Saturday, November 7, 2015

Steriod Fear and Flu danger, drains your tank




Another night of hell and completely OUT OF GAS!

Well ok, so the crash the night before last may have been related to a virus my body was fighting. Yesterday afternoon it landed SUDDENLY.  I was running with diarrhea (that word is hard to spell lol) and then by evening a fever hit me. 
I never get sick like this. It has been at least over two years since I had anything make me sick enough to have a fever. I remember that time well though. That was my night in the ER where the docs spent hours trying to calm my nausea with injections of anti nausea meds to no avail. Finally they gave me 100 mgs of Solu-Cortef and the world became a better place in a few minutes. I even was able to eat a little where before I could not even keep water down, and I was dehydrated.
However that night  they coldly injected me, they then coldly handed me my walking papers and sent me home. I was a baby in adrenal insufficiency and didn't realize that the injection would wear off in a few hours and I would be right back where I started. I remember laying in my bed crying out to God "please help me" as I felt I was going to die. How I didn't die, is  miracle from God.
Well last night it happened again.  BUT this time I am not a baby in AI and I am on the pump. So I started my pump up to 200 percent to stress dose me and I started giving one mg. bolus' to pull me out. It wasn't working. What was my first clue that I was in trouble? It wasn't the nausea since I thought that was the flu related. It was that I was having an argument with my hubby over something silly and I started to cry and melt down. Yes melt downs are part of this.  I also was hit with hives again due to the stress my body was under, so there I sat scratching all over, running a fever with chills, wanting to vomit, running to the toilet and crying. HELP ME LORD!
What do I do now? These one mg bolus' were not working.  Now is where I take you into what steroid fear is.

Steroids make you FAT
Exactly. It is so ridiculous that a doctor called me a steroid seeker in my past, when in truth I hate them.  I have gained 10 lbs a year over a ten year period. GASP that is 100 lbs. I finally stopped gaining after I got on injections and stabilized, then I lost 20 lbs when I went through HIVE HELL.
I am terrified of having to end up on a larger dose of this stuff. 
When I had my knee surgery two years ago, I had to take up to 125 mgs a day to stay alive. That was when I was on the pills. That dose socked ten more lbs on me almost over night.  

I HATE STEROIDS!
Isn't is ironic that the thing that actually saves my life, is the thing I fear the most and hate? 
That is the sad part. That 100 lbs makes me very uncomfortable and taking it off is hard, as I still cannot do a whole lot of exercise without crashing enough, so I spend the next day in bed.

My Awesome friends and my free ER
So I gave up and panicked and posted in my HC Pumpers group what was going on. I wanted to hear their experiences with overcoming the flu through the pump.
Well some very experienced and loving friends guided me through the night and became my free ER. Since we currently don't have health insurance, I didn't want to land there and sink us into debt.
They prevented me from that. Although they had to be very patient friends. They were telling me to inject 100 mgs NOW! I was in steroid panic. As sick as I was, crying and scratching etc. and almost dying from being entirely "out of Gas", I still didn't want to take those steroids! They are the ENEMY!
So I started out with 7 mgs here and 7 mgs there. I was going to see if I could get away with alot less then that 100 mgs.
Well before the night was up, I had injected 100 mgs, had a 25 mg injection set by my bed for any night time coverage needs and my pump up to 200 percent.  
Each increment that I took got larger. First it was 7 then 7 again, then 25. Now I was getting braver. I was not out of the black hole yet. So another 25.  Getting better. Nausea lifting, fever dropped, calming down. No more dying. Still very anxious though. Another 25 and I hit 100 mgs. It took two hours or more to get there. 
I never really obtained an appetite, but had not eaten in 12 hours so I made scrambled eggs and brought my blood sugar up. I topped the night with a hefty dose of sea salt and water, because I salt waste under stress. At that point, I crashed into blissful sleep. 
I woke this morning and never took that injection in the night, but I am a train wreck today so I took that 25 mgs this morning. 
My pump is screaming at me for cortisol so I guess I used up my whole vial in one day with the 200 percent. That means I took 200 mgs yesterday.  
I will survive. I will continue to fight. Some how I will find my way to over coming steroid fear and weight gain. Some how I will heal to the point I can exercise again and lose this 100 lbs I hate carrying.  
God is with me. He will not fail me. Thank you Lord for leading me and guiding me on this path and for the awesome friends you have put on this path to help me through. 
Thank YOU for allowing them to keep me out of the ER and saving my life last night. I love you Lord and I know you are going to give me victory in this process!!