Unrelenting Symptoms??

In June of 2019 I went to the ER after feeling poorly for a week or so. I was weak, tired, shakey, confused and just wanted o sleep.  ER told me I was dehydrated, gave me a liter of fluid, some HC and sent me home.  It took the ER nurse four times to stick me, and when I suggested she call someone from the lab to help…….she got very testy. My blood pressure was very high, and the doctor was more worried about that than my AI.  He told me that in Addisonian Crisis BP went low….not high.  I shook my finger at him and said “not necesarlly”, that was when he decided he didn’t like me.  (I must note that my endo is not on staff at the hospital I went to)

At home, I felt no better.  Weeks went by with no improvement in my symptoms.  I was in daily contact wih my endo by phone, and she couldn’t figure out what was going on either.  I went from my bed, to my recliner to the couch.  I updosed, drank liters of water, increased my salt intake, and slept a lot.  I stayed in this “flu-like” condition for weeks and weeks.

I have not feel well since.

It seems that the ups and down of this disease are just stuck……no ups….just downs.  I haven’t had a good day in months and months.

On top of the AI, I developed bursitis in my hip, and nothing has helped that either.  Pills, physical therapy, ablations, and steroid shots.  My pain level can go from a three to an eight……….I know the pain is stressing out my body, which isn’t helping me at all.

I am going to try and start blogging again, with not so much bitching and complaining!

 

 

Medications that messed me up!

I have had terrible experiences with a few prescription drugs and didn’t know what was wrong at the time.  After 15 years of dealing with chronic illness and drugs that are supposed to help you, I decided to share my stories.  When you are newly diagnosed with an illness you’ve never heard of, it’s tough to handle.  I was so ill in the beginning, I took anything my doctor wrote a prescription for believing it would help.  It didn’t always help.  Some drugs  actually made me feel worse, and some created side effects I couldn’t manage.  Add to the mix the doctors that tell you that your body will adjust and just give it time.

In 2001, when I was first diagnosed with Adrenal Insufficiency, I had an endocrinologist who was an excellent doctor, but she knew little about my condition.  She learned, and took good care of me, but she just couldn’t understand why I continued to be so sick.  She was of the opinion that if I was taking my steroids I should feel better.  I am on my fourth endo and have finally found someone who is knowledgeable about my condition.  She gets it.

The first medication that messed me up was Paxil.  Of course I was depressed.  Of course I cried all the time.  Of course I felt hopeless.  But depression was not my problem.  But doctors thought Paxil would help me, so like a good patient I took it.  It was a nightmare.  I slept all the time.  My vision was so horrible I couldn’t read.  I experienced “brain zaps” buzzing electric shock sensations in my head, jumping movements in muscles in my hands, feet and legs. (I kicked my Hubby a lot during the night) I fell down a lot and fell out of bed often.  If I had to get up to use the bathroom during the night I would get confused and completely disoriented.  I finally talked to someone else who was taking Paxil, we compared notes, and realized that some of these unusual symptoms might be from the drug.  I was referred to a Neurologist who weaned me slowly off Paxil.  It took a while, but all those scary things stopped.

But the Neurologist started a whole new nightmare for me.  In my next post I will discuss that long long struggle with another medication.

 

My Blood Pressure

My blood pressure has been high for several years now.  I have taken many different medications, but none has solved the problem long term.  I saw my doctor on October 19, and my blood pressure in his office was 153/100! Yikes.  He changed my medications around, added a new one, and yesterday when I took my blood pressure it was 107/75.  Much better.

Let’s hope this medication keeps this problem under control for now and keeps it controlled long term.

My older sister went to the eye doctor today and she has cataracts.  She will have surgery sometime in early 2016.  I fear this is something else I will develop because of my daily steroids I take for my adrenal insufficiency.

Thank you steroids.  You keep me alive, but you’re killing me!

 

 

What the Heck is STRESS??

1. Stress:  A state of mental or emotional strain or tension resulting from adverse or very demanding circumstances.
2. Stress: Your bodies way of responding to any kind of demand or threat.  When you feel threatened your nervous system responds by releasing a flood of stress hormones, including adrenaline and cortisol, which in turn rouse the body for emergency action.

But, if you have adrenal insufficiency, your body doesn’t produce the hormones needed to handle stress.  I have adrenal insufficiency and it is a life-threatening illness.

I could go on and on about stress, but most people only think of the normal stress that everyone experiences on a day to day basis.  The stress that aggravates you, puts you in a bad mood, makes you cross with your family or co-workers can land me in the emergency room. An injury or illness can stress out my body so quickly that I don’t see it coming.

Several years ago, my Father-In-Law was suffering from cancer and was moved to a nursing home.  We had out of town family staying at our house, and when he passed away we had all the planning and arrangements to take care of.  A very stressful time.  My family kept a close eye on me, made sure I “stress dosed” and got enough rest.  I made it through the whole thing perfectly.  Two weeks later, my cat died.  I ended up in the hospital with my worst adrenal crisis to date. Dangerously low potassium, sodium and blood pressure.

Another incident that lead to an adrenal crisis was food poisoning.  A UTI threw me in the emergency room with no warning also.

If you have adrenal insufficiency, you must always be prepared! Let people around you understand the importance of your emergency injections, and getting you to the hospital quickly for IV steroids and treatment.

You never know what can start an adrenal crisis, be aware of what your body is telling you.  Don’t ever think you can “ride it out” and get better on your own.  Go to the hospital!

 

 

Fatigue Monsters

Yesterday the overwhelming “fatigue monsters” started moving in, and today they have made themselves right at home.  I slept thirteen hours last night and then spent the whole day on the couch.  Too exhausted and weak to do anything.

Adrenal insufficiency can really knock you down and do it quickly with no warning.  I have been handling a stressful situation lately, and no matter how hard I try to overcome it, my body goes haywire.  Stress is my worst enemy, but there is stress in everyday living, you just can’t avoid it.

So, I am resting and taking it easy today. Hopefully tomorrow I will feel better and not like someone could knock me over with a feather.

Am I Old Yet?

I just turned 62.  Am I old now?  I remember when 62 meant you had a foot in the grave, or maybe both.  The worst thing about being 62 is that 63 will be here in a blink of an eye.  Years move faster now, unlike me, and there is nothing anyone can do to slow down the passing of years.

Remember how long it took to go from Kindergarten to eighth grade?  EONS!

Four years of high school……eternity!

My twenties took forever….which is good because my twenties were

 A W E S O M E !

Soon however, things sped up.  My Mother told me that once you have kids, time means nothing, and after that, years just fly by.  She was right.

I imagine that we are all traveling on a huge conveyor belt marked with our decades.  I have passed the one marked “60”, I hope I will pass up “70” also.  Unfortunately, I can’t see the end of my conveyor belt, but maybe that’s good.

What does it feel like to have MS?

Great post trying to explain how you feel with MS. Good read!

lisaslunacy

Because common words, like “tired,” “fatigued,” “achy,” and “confused” don’t really convey what it’s like to have MS, please humor me on this little journey. Try to picture everything you read happening to you.

Your boss calls you into her office and says you have to leave immediately to go to Russia for a conference. You feel panic rising, but you get home as fast as you can and pack a carry-on bag. You put too much in and it becomes bulky and heavy, but you don’t have time to care. You race to the airport, worrying that you’re going to miss your flight.

All the way through getting your ticket and going through security, you continue to check your watch, hoping you’ll make your flight. You finally get to the plane and you are the last person to board. You are seated in the middle seat in the very…

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Trying something different

Since diagnosis of secondary adrenal insufficiency in 2001, I have tried several dosing schedules and doses trying to find what will help me feel “normal”.   Five days ago I changed my dosing times, starting at 6am with 10 mg HC, then 10mg at 9am, 5mg at noon, and 2.5 at 3pm.  So far…. so good!  I am waking up earleir with less drowsiness during the day,and having an easier time with sleep at night.   There has been much discussion online about the generic HC manufactured by Lineage,which is what I have been taking for months now,  Some people are reporting that they feel much better with the brand name CORTEF, so I contacted my doctor, and she ordered me some.  I should get that within a week, and hoping that helps me also.  Of course, I know that you can try something different, change things up and it doesn’t always work, you don’t improve much or for long. But I am willing to try this, pay the extra money for the brand name medication and take a chance.  I have an exciting summer coming, my son is getting married in June, in Colorado, in the mountains! High altitude, happy stress, traveling, different climate……all of which are not the greatest scenarios for us sickies.  Keeping my fingers crossed that a change will be a good thing for me for now.  

I JUST WANT TO BE OKAY

Day by Day With My Adrenals

“Someone asked me what are my “Favorite/most useful coping skills – for pain, depression, and all the silly side effects that come with having chronic illness?””

Hmmmm?  Do I have any coping skills, or do I just roll with the flow?  My first thought is that I am only able to cope with my illnesses with the help from my medications.  Other than that, I don’t handle this “chronic illness stuff” well at all. But, I have made it  through many a bad day by remembering some basic things:

• Accept what you have and don’t argue with God anymore…I don’t mean give up…just accept it
  

• Accept help from the people who love you

• Accept that your HUSBAND and kids are as frightened as you are about this new thing called “chronic illness”

• Help your family understand what you need…I don’t mean a glass of cold pop or a sandwich…You need to tell them you need rest, understanding , companionship…

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When You Have a Chronic Illness or Disability You Are Not Obligated But You are Allowed

sunshine and chaos

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