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 one to 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 a lot 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 me 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!