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!

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. 

Kidznlildogz@aol.com

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. 

Kidznlildogz@aol.com

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!!

kidznlildogz@aol.com

Out of Gas at 2:38 Am and on the dark road alone

How I got LOST and Out of Gas on a Dark Lonely Road

It is 2:38 am November 6, 2015. I am not sleeping. Why?  I had fun yesterday. Fun sometimes carries a penalty when you have adrenal insufficiency. So here I am in a mild crash and since I am responsible to bring me back to life, I have to bolus my insulin pump that actually runs cortisol, not insulin, into my body.  It is my exterior adrenal gland. I never know exactly what I need, so my foggy head is guessing and adding a unit or two at a time and waiting to see how my body responds. 

It is a task that could boggle the mind of the most capable person on this earth. Everyone's body is different and so there isn't any manual that will tell you how much you need to give your body. I am "Out of Gas", my term for running out of cortisol because cortisol is the gas that runs your body's life, 

Each time I am out of gas, I have to figure out how low the tank is, and what it will take to fill it so my body can run ok again. There are so many issues that can play into this decision.  How bad was my previous stress?  How am I feeling in health, generally? Am I low on blood sugar? Do I need to eat also?  

So I am tanked this morning and I begin the process. One little unit, two little units, three? Take a break. Let my body catch up a few minutes and see how it has responded. Nope, not enough. Repeat the process. Then I raised my pump up to 110 percent. That allows my normal cortisol to go up a bit for a few hours. A bolus is a one time deal, but the pump is set to run 24 hours with a dosage that suits my body's normal activity. But if I have gone beyond my normal activity, I can raise that dose by a percent, and it can help me pull out of low, or it can be used to do activity and provide the gas I need at that time.

The problem is that this girl doesn't always use the preventative method and add more gas when I am under stress, or just plain having fun activity. Then of course I pay the penalty, as I am now at 2:38 am. 

I didn't get back to sleep until 6:30 am.  As my brain is sorting out all of this, I am genuinely scolding myself for not raising my percent when I rode my motor scooter an hour and a half yesterday. Shoot Terry, when are you going to get smart about this stuff?  Here you are now suffering again. Once again. Yes it has been like this for many years. Suffering comes in many forms when you have AI.  (Adrenal Insufficiency).  

How it all started?

Well I will try not to bore you with all the lonely dark details of this disease process, but rather give you a quick recap. I mostly want to spend time sharing my experiences along the way to help others on this journey.

Some where back down that lonely dark road about 15 years ago, I started having migraine headaches very frequently. They happened the most, if I did stuff the day before, and then I woke up with them. It was years before I understood part of the problem was dehydration and years later before I found out it was low cortisol that caused the dehydration and the migraines.  Anyway I had them about 20 days a month which is a bit of pure hell! 

I went to doctor after doctor for tests and tried all sorts of drugs but nothing helped.  It was discouraging. With this came the fatigue and the beginning of alot of bed rest. Terry was simply pooped out. I was raising a large family of teenagers through it all, as we have nine children. Four by birth and five adopted. http://www.parentingfasdkids.com

That sure was hard because my youngest two have fetal alcohol syndrome from exposure in the womb by their birth moms. I was in the schools a lot and trying to help them all with this horrible fatigue and migraines all the time.

Well so now we get to the start of some answers. My family doctor tested my adrenal glands and thyroid. Both were very low. He then sent me for an ACTH test which proved I had secondary adrenal insufficiency.  What was next?

PILLS! Hydrocortisone pills and thyroid meds.  Boy this was the beginning of Endo School for me. I spent the next seven years at least researching everything I could about this illness. I began to believe something was wrong with my pituitary and by now I had an endo doc. He didn't really listen to me. 

Things spiraled  down to endo HELL and I was waking up in the morning DYING daily.  It was horrible.  I kept telling my endo doc  what was wrong, but he just didn't have answers and didn't understand this all well enough himself. He actually determined that I was having anxiety attacks and told my doc to put me on anxiety meds 24/7.  What a hoot. My doc suggested that I might be a steroid seeker.  Could not have made me feel any worse really. I knew what was wrong, but no one was LISTENING!

Eventually I found a doc in Integrated Medicine who tested me further and she actually tried to help me. She proved that my pituitary was not producing ACTH at all and there was such a low cortisol level in my blood that I was close to dying every morning. ANXIETY MY FOOT!  I was DYING!

I also got an MRI for an ear issue and found out I had an Empty Sella Sac in my pituitary. NO WONDER it didn't work. It was all fluid!  Endo hung his head in shame when we found that out, but he still didn't help me further. He was stuck on "all adrenal patients live on 20 mgs a day of cortisol".  Well I nearly died one day. I woke up in the lowest of lows and walked down stairs to put my dog out. I spoke to her and my voice came from another place. WHAT THE HECK?  I was so weak I could barely walk and I turned around and nausea about threw me down to the floor. Adrenalin was screaming through my body, as my adrenals were trying to make cortisol but they couldn't, so they made adrenalin instead.  

I called my son and asked him to come over, as I wasn't sure I was going to make it out of this crash alive. He called 911. I refused to go. I had been in the ER previously with an adrenal crash when I had the flu. They don't get it either. I was given a 100 mg injection of cortisol and it pulled me out, but it was forever before they did that. I was afraid I would die before they helped me there. 

So I was taking hydrocortisone under my tongue and laying down until it kicked in. I told the ambulance guys that I was going to be ok. They left and I continued to save my life gradually with a large stress dose that my doctor didn't really approve of. 

 I did call him later and told him what happened. He told me to get a medical bracelet and called me in an emergency injection to have on hand, but nothing more then that. I continued to be at risk for a couple more years.

The Pump

In my research I discovered that some people were using a diabetic insulin pump for cortisol. I also found out that some people do not absorb the pills too well and it was beginning to look like that was the case with me.

A miracle soon happened and I found an endo doctor at the Cleveland clinic who understood my issue with the pills and was willing to give me the injections first and the pump later. That was the beginning of LIFE~

Hive Hell

Well I took the injections and whoopie they got me out of bed!  After 15 years of life there and an extra 100 lbs, that meant the entire freaking world to me!  YEAH! I was able to garden and do stuff and of course I WAY overdid it!  

Two weeks later I ended in the ER with my heart flipping out. They could not determine the reason but thought maybe my thyroid meds were too high, but the next day HIVE HELL landed on me.

It was a prerequisite to the hives or similar to an allergic reaction that affected my heart.

Hive hell took me into adrenal hell again for many months and after 7-8 ER visits and one hospitalization, I finally figured out help for the hives. A very low histamine anti candida diet and it is helping alot.

ER Docs

This brings me to the place where I want to comment on what ER docs will do with AI patients. They treat you like you are making up your symptoms. In fact I had one doc outside the ER actually accuse me of making this up.  He thought it was all in my head. UM, gosh all those tests must have been wrong?  The way I lived and felt, was made up?  Did anyone realize that I wanted to LIVE and DO LIFE?  This is all so very misunderstood. All of us who have this, have the job of educating the doctors instead of the other way around. We won't survive if we don't. We are responsible for our very own lives.

Today Gas is still a bit low

Now I have given you a snapshot of my history with this disease. This blog is going to be education to the world about living on the pump. I want to help others get this who are suffering like I was.  I have lots more to share and will interject those things in my blog posts.  If you are someone suffering from this illness without help, I pray you can find it. Yes my life now still holds nights like last night without sleep, as I am still working out the kinks in cortisol replacement to do life. But all in all, I am doing life now much better then I was. I am not dropping into the worst places anymore. Last night was mild and uncomfortable and I am very tired today. However it is preventable. Come with me as I learn for myself how to prevent running "Out of Gas" from doing life.  I want to share with you my journey to wholeness.  

kidznlildogz@aol.com