Thursday, June 26, 2014

Health Journal

My doctor suggested that I keep a health journal to help determine when I need extra medication. It has really helped me. Simply write down when you feel tired, anxious, or any other problem. Put in the date and time and any circumstances- what you have been doing, exposed to, eaten, emotional stress. See if there are any patterns and discuss your observations and questions with your doctor. This gives him more information to help you adjust your medication.

 If I do not have enough cortisone "cover" I can become anxious and exhausted when I experience any sort of stress such as exercise. One of the reasons is that my blood sugar will drop which causes anxiety. If I need to do more than usual such as a few weeks ago when(I walked half a mile around a bird refuge. then I need to take a little extra hydocortisone about an hour before I exercise. (2.5mg to 5mg of hydrocortisone) I also usually need to eat a high protein snack before and after exercising such as nuts. 

I have been avoiding chemicals for several months and am feeling much better. I have a lot more energy now. I am also more even tempered. When I am around perfumes or other chemicals, I become very depressed. It takes a few days to feel better and about two weeks to feel like myself again. Though I'm not going IN anywhere, I'm thoroughly enjoying being OUTSIDE.The fewer stresses I have in my life, the better I feel. Keeping a journal has given me an understanding what is a stress to me. It really has helped me live a happier life. 

Saturday, February 1, 2014

Places for More Information       One of the best sites. Good practical information on how to live with                                              Addison's Disease.

 National Adrenal Diseases Foundation Support Community
                                        Good support group

Adrenal Fatigue The 21st Century Stress Syndrome by James L. Wilson
                                        Good description of low adrenal symptoms and how to recover.

feeling fat, fuzzy, or frazzled? by Dr Richard Shames
                                          How to tell if you are having thyroid, adrenal, or reproductive balance                                           hormone problems and how to treat  Good medical information about Addison's Disease      Good medical information about Addison's Disease

Topics I've Found Helpful

Surviving Mold by Ritchie C. Shoemaker, MD
                                          Symptoms of mold problems

The Complete Book of Allergy Control by Laura J. Stevens

The Allergy Self-help Book by Sharon Faelten and Prevention Magazine

For Getting into Shape  (When you are really out of shape! Check with your doctor first and quit with you start to feel tired or stressed. Remember exercise programs are not designed for someone with your health problems. You will need to adapt anything for your own needs)

Pain Free by Pete Egoscue       Basic strengthening and straightening exercises by a master therapist
Pilates  -- core strengthening ; I like Louise Solomon's
Ti Chi  -- slow and gentle
Yoga  -- good stretches; most of the strengthening take a long time to build up to
Walking  -- good place to start
Prevention Exercise DVD's -- many types
Qi Gong  --  slow and gentle

Friday, January 31, 2014

Mold and Adrenal Glands

I had never thought about how mold affects adrenal glands until a couple of months ago. In August we decided to do some remodeling in our 67 year old basement. When we removed the paneling, we were shocked to find mold underneath on the drywall. It took us a month to get most of it out of the house. All that was left was old cinder block walls and the ceiling joists.

Within a few days I began to have more energy than I have in years! I could hardly believe it. It didn't seem real after forty years of dragging around. 

The beginning of November I started having some problems. I was having more trouble not being able to get to sleep, and I started to have trouble with my blood sugar going up a lot after eating a regular balanced meal.  I told my doctor and he explained to me that mold can severely suppress your adrenal glands and that sometimes when the mold is gone the adrenal glands can begin to function again. I questioned if it could happen even after taking hydrocortisone for ten years like I have, He said it could happen and wanted me to slowly cut my dose. I would take 5 mg less for three to ten days then drop another five. I checked my blood sugar and blood pressure carefully. I was down to just a couple milligrams a day, and all was holding well. I was excited! Maybe my adrenal glands were coming back to life!

Then it happened! Or maybe didn't happen is a better description. I just quit. It was like a car running along fine, there is a sputter, then nothing. I was so tired I couldn't move and cold, headache, nauseous. and couldn't think. I did have enough awareness to realize that I was going into an Addison's Crisis. Quickly, I started taking more hydrocortisone. In twenty minutes (the time it takes for the medicine to hit my blood stream), I was improving and even able to go to my daughter and son-in-law's for Thanksgiving. 

It took me a couple of weeks to get back to my normal energy level. Though it wasn't fun, I did learn a lot. First, take mold VERY seriously! Mold can destroy adrenal function and greatly stress your body. Susceptible people (like me) can get very sick if they are around mold. Now that the mold is gone, we have been able to cut my dose of hydrocortisone in half. I am back down to a normal dose. 

This month was a real test to see if I could do well on the lower dose of hydrocortisone. I pulled my knee moving my library. Though I was feeling better, I hadn't built the muscles I needed for such a heavy project. Also, I had a stomach flu. I wasn't able to eat much for three days. I was able to keep taking my medicine though and have been recovering well without having to take much extra hydrocortisone. It looks like getting the mold out of my home is really making a difference in my health. 

I also learned that your body can store hydrocortisone for awhile. Apparently when I was cutting my dose of hydrocortisone, I really wasn't doing fine on such a low level. Instead, I was using extra hydro that I had stored when the mold was gone since I no longer needed as much medication each day. This store made it appear like my adrenal glands were producing cortisone when they really were not. When I ran out of stored hydrocortisone, I saw what my body could do on its own -- nothing! But without the constant stress of the mold, I only needed half the hydrocortisone and had more energy and stamina. Also, I began to be able to eat foods that I haven't been able to eat for years. It is wonderful!

I learned that not only do I need to make sure I get enough hydrocortisone each day, but I need to frequently monitor my blood sugar When it begins to rise then it is time to cut my hydrocortisone. Cutting 2 1/2 to 5 mg every three days is about the max you should ever try and do that only after checking with your doctor. My doctor has known me for nearly thirty years and had confidence that I knew how to monitor the process. 

I have learned a lot and am feeling better than I have in a long time. I also realize that I just can't take a set dose of hydrocortison. I will always have to check how I am feeling and my blood sugar and blood pressure to know if I need to increase my dose of hydrocortisone or cut it. It will change with my needs. Normally, our adrenal glands automatically help us adapt to change. Since mine no longer work, I must learn to adjust my cortisone levels myself. It is challenging, but worth it!

Monday, October 14, 2013

Living Within Reasonable Limits

Well, it has been another year and I really am doing a lot better. I am still volunteering, but only eight hours a week instead of thirty. Learning to set reasonable limits has helped me a lot in managing my low adrenal function.

Another big change in my life is MOLD! We found mold behind the paneling in our 67 year old basement. We have had to strip out all the paneling and drywall. The old cinder block walls are a bit scary (we'll eventually cover them), but it was worth it.  My energy has really increased and I am more alert and can think better. In fact, I am able to function as a partner in my husband's handyman business. I have seen that he did ok with the mold in the house, but without adrenal function, I became very ill. I am realizing that a person with strong health can handle a lot more than I can. Having a "safe" environment is important to someone who has an impaired immune system, which I have since my adrenal gland don't produce cortisone.  Every little thing does add up. I have removed most plastics, cleaning products (just use hydrogen peroxide), and perfumes from my home. We have used no VOC paint and do not use any pesticides. I wear cotton clothes, and eat organic foods. It really has made a difference in my health.

It seems that even with taking hydrocortisone there is only so much stress my body can handle. It's like having so much in a bank account. If I don't have to spend my medication on coping with my environment, then I can have more energy and putter around the house, go for a walk, or go out somewhere which is much more fun!

After we got out a lot of the mold, I even had enough energy to help remove the drywall. As I swung the heavy demolition hammer, I wondered if my immune system had healed! In my excitement, I kept doing more and more. After a few days, I was back to my old fatigued self. Nothing had healed. I had just built up a little adrenal reserves and then over did it and depleted these reserves.


I knew I was getting more and more tired each day. That is a sign I should have paid attention to. When I do something and am more tired the next day, then it is too much. It is time to cut back and rest. If I don't choose to stop and rest, then soon I will just stop. I will be unable to move and the only option will be to rest until I recover-- not fun!

Now that I have a "safer" and less stressful environment, I was able to recover from my drywall over do within a couple weeks instead of several months.  I can also now do something bigger, such as a short trip, and only be tired for a day or two afterward.

I am trying to remember that since my adrenal glands no longer work that I will not be "healed" any more than a severe diabetic will be "healed". I can live a good life and do the things I most want to do, I just have to stay within my limits and not become over tired.

Monday, October 1, 2012

Adrenal Collapse

Well, here I am again! Dizzy, achy, dopy, tearful, nauseous, and I can barely walk across the room. I’ve been asking myself, “How did I get to this point?” “Were there any warnings?” and more importantly, “How can I avoid doing this again?”

In the three weeks since I collapsed (that what I call it when I reach this point), I’ve had a lot of time to think. Actually, I’m grateful to be able to think. For the first four days all I could do was sit and stare out the window in a dazed fog. My eyes wouldn’t even focus. Now that I am up to writing, I want to record what has happened while I can still remember it. I also hope that you might learn from my experiences and be wiser than I have been.

I have been sobered to realize that since my adrenal glands no longer produce any cortisone, I could have gone into an Addison’s Crisis. This is the point where your body can no longer cope with stress. You become extremely weak, confused, your blood pressure drops, and you can go into shock. All in all, not a place you want to go. There are warning signs right before this happens: headache, dizziness, nausea and vomiting.

I’m aware of these symptoms and just before I start vomiting, I start taking more hydrocortisone and resting. Consequently I don’t officially hit a “Crisis”, but I sure come close – too close!

I do this fairly regularly and am beginning to wonder how bright I really am. I am also becoming concerned because each time I collapse, I don’t seem to recover to the point I was before I collapsed. Besides it isn’t very fun and takes months to recover. Obviously, I need to make some permanent lifestyle changes.

I started by looking up the symptoms of exhaustion. They are rapid or high heart rate or pulse, dizzy (balance problems), confusion, sweating, fatigue, headaches, pains, no appetite, stomach pain, diarrhea, bloating, nausea, sore throat, sensitive to light and noise, depression, irritability, panic attacks, restless at night, swollen lymph nodes, poor memory, muscle and joint pain, bladder problems, heart palliations, and shortness of breath. I had every symptom! So I was exhausted, but this is how I always felt. I could even add a few symptoms to it: pinky skin, salt cravings, muscle and joint pains, muscle weakness, lethargic movement, dehydration (a 2.6% drop in hydration will double your fatigue), fever and chills, pain in my mid back (adrenal glands), and moments of low blood pressure and blood sugar.

I was shocked!  I was accepting exhaustion as “Normal”!  I’d always been ill, but that was no excuse. I think one problem I’ve had is that things change fairly slowly. When I collapse, I am forced to stay home and rest and relax.  After several weeks I  partly recover, become bored and tired of staying in, and resume trying to do all those things I want to do. At first I when I go out, I feel pretty good afterward. I think, “I can do it now! I’m better!” After a couple weeks, I become a little more tired after each thing I do or outing I take, and it takes me longer and longer to recover. Finally, I reach a point where I feel constantly tired, depressed, achy, nauseous, and can just barely drag myself around. My headaches increase and I have trouble sleeping, then I collapse again and rest!

How can I keep from doing this anymore?  First of all I have to accept that I have Addison’s Disease. I have been tested and my body does not produce any detectable level of cortisone. Cortisone keeps your blood pressure and blood pressure level so you can deal with stress and feel well. I try to take enough replacement natural hydrocortisone to cover the stresses in my life, but like a diabetic you can’t just keep taking insulin and stuff yourself with cake. I’m realizing that I have to live a life within the limits of a reasonable amount of medication. I haven’t been doing this. I’ve not had enough hydrocortisone to match my stress level. I wondered  if I could just increase my medication. No. There are effects of higher cortisone (weight gain, osteoporosis, diabetes, and depressed immune system ).  The only solution I can see is to cut the stress level in my life.

Ok. How do I do cut down on stress? Physically I think I do fairly well. I get to bed at a reasonable time and am now taking the time to rest during the day. I eat a good balanced diet of organic foods. As I recover, I will gently exercise. I avoid extremes in temperature (air conditioning is essential for me) and dress warmly when it is cold. I try and avoid foods and things to which I’m allergic. There is a lot physically that I can’t change, so I am trying to get more rest to help compensate for these stresses: injuries, allergies, chemical sensitivities, intestinal damage, malnutrition, and pain.

Physical stress can be rough, but it also seems that emotional stresses really wear me down. Feeling that I had plenty of time since I was retired, I had taken on several volunteer commitments in our community. I added them all up and was surprised to find that I was spending about thirty hours a week volunteering. With all the time I need to care for myself (rest and exercise), I just couldn’t do it all. I started to analyze each commitment. I loved doing each thing! I didn’t want to give up anything! I also knew that I wouldn’t live a very long or have a very enjoyable life the way I was going. Something had to go! It was very hard, but I chose just a couple of less stressful things that I really enjoy doing and let the rest go.

I’ve noticed a difference since I’ve made these changes. I’m feeling better and recovering faster. I’m finally relaxing, and it feels good! I didn’t realize how much I have been pushing myself. Life seems brighter, and I’m enjoying doing things that are meaningful to me.

I am starting to want to do more, but am firmly trying to resist the impulse to push myself to the max. I know I need to live a low key life so there is something left for all the expected things that happen. I am trying to live within a reasonable about of medication cover so that I avoid collapsing. I am going to do it this time!

Questions to Ask to Avoid Becoming Exhausted

(Signs I'm becoming more Stressed)

Am I becoming more tired?
Do I keep looking at the clock and wondering when the day will end?
Have I quit looking forward to doing things?
Am I enjoying doing things, or am I just trying to get through the day?
Have I quite laughing?
Am I always serious?
Am I depressed?
Do I feel edgy and have trouble relaxing?

Do the stairs seem twice as long?
Am I becoming out of breath easily?
Do I just want to sit and never move?

Am I having more head aches?
Are they becoming more severe?
Is it a sharp pain in the middle of my forehead?
Am I waking up at night with headaches?
Am I having neuralgia pain (nerve pain)?

Am I having trouble sleeping?
Do I have trouble getting to sleep?
Am I achy at night and toss and turn?
Do I have trouble getting back to sleep?
Am I waking up with panic attacks?
Do I feel like I am not getting enough air?
Do I feel anxious?
Am I sleepy in the late afternoon?
Do I feel best right after dinner?
Do I doze a lot in the evenings?
At bedtime do I have trouble getting to sleep and am I then awake for a couple of hours?
Am I keyed up at night and have trouble relaxing?

Have I lost my appetite?
Do I feel nauseous?
Do I have heartburn or lots of burping?
Is it getting hard to get down food?
Do I need to eat more often to feel better?
Do I crave sweets? (blood sugar dropping)
Do I feel more hungry?
Do I sometimes have no appetite?
Am I eating to keep up some energy?
Do I gag easily when eating or drinking?
Am I experiencing bloating, gas, diarrhea, or incontinence?
Do I just want to wear lose clothing? (nothing tight around my middle)

Does my chest feel tight?
Am I getting a cough?
Do my allergies seem worse?
Do perfumes and chemicals seem to smell stronger?
Am I getting headaches around perfumes?
Does print and inks give me a headache and cause my sinuses to burn?
Do I have a sore throat?
Are the glands in my neck swollen (lymph nodes)?
Are my eyes crusty and my nose stuffy in the mornings?
Am I getting sick more often?
Is it taking longer and longer to recover from illness?

Am I getting sleepy and dopey when I go out places?
Do I fall asleep often when I’m out?
Is it talking longer to feel ok after I go out?
Am I very tired the next day?

Do I feel more achy and stiff?
Is it hard to make a fist? (slow movement and stiff)
Is my neck, shoulders and back cramping?
Am I having more leg cramps and jumpiness?
Is my abdomen cramping when I move much?
Do I have pain in my mid back?
Do I have pain in the middle of my chest?
Am I shaky?
Do I lose my grip?
Am I dropping and breaking things?
Am I weak and have trouble lifting things?

Is my blood pressure going up a little?
If my pulse racing?
Am I getting dizzy when I stand, or after I eat or exercise?
Do I feel dizzy even if I am sitting still?
Are my fingers turning purple?
Is my blood pressure dropping?
Am I constantly thirsty?
Is my mouth dry?
Do I crave salt?
Am I retaining a lot of water?
Are my legs, abdomen, and hands swelling?
Do my feet and legs ache?
Is my face becoming puffy, especially under my eyes?
Do I have dark circles under my eyes?
Am I suddenly putting on weight?

Is my face a deep pink?
At times am I very pale?
Am I suddenly becoming very hot, especially my face?
Do I suddenly drip with sweat?
Do I wake up in the middle of the night hot?
Am I very cold in the mornings?
Do I have trouble getting warm?
Do I have cold icy feet?

Am I having more trouble getting going in the mornings?
Do I find that there are many “holes” in my day (time I just don’t remember)?
Am I not getting much done in a day and don’t know why?
Do I forget what I am doing?
Do I have to reread and reread a sentence?
Do I have trouble following conversations and responding?
Do I tend to just agree because I don’t know what they are talking about?
Am I having more difficulty doing math, forms, and other details?
Am I always sleepy and tired?
Do I just don’t have any energy?
Do I have to remind myself to blink?
Do I just sit and stare a lot?
Do I feel like I’m carrying a huge weight around, or like I’m struggling to move  through molasses (slow sluggish)?
Am I having trouble managing my home? (forgetting, moving slowly, too tired)
Do I never feel rested?

Is the world looking grayish and like I’m looking in a tunnel?
Am I forgetting more?
Am I have more trouble thinking and confuse easily?

Do things upset me more easily?
Do I feel tearful?
Do I feel grouchy?
Does everyone seem irritating?
Does everyone and everything seem upsetting?

Do my eyes burn and feel dry?
Am I becoming more sensitive to light?
Can I focus in the mornings?
Do I have trouble focusing on smaller print?
Do my eyes fatigue easily?

Does looking at the computer screen hurt my eyes?
Do I feel pain when I move my eyes?

Am I unable to read?

Is my skin more dry and more itchy?
If I pinch my skin, does it stay pinched for a while?
If I press my skin with a fingernail, does the mark remain awhile?
Is my skin crepey?
(This means I’m getting dehydrated)
Are my nails more dry and brittle?
Are my gums becoming sore?

Am I losing my coordination?
Am I tripping more?
Am I wobbly and have trouble walking?
Do my hands shake some?
Am I getting a twitch by my eyes?
Do I start shaking even with a mild stress?
Does being near anything electromagnetic give me a headache?  (microwave, TV, computer, phone)

Do even small noises startle me?
Is even soft music tiring?
Does the ticking of a clock seem loud?
Do loud sounds make me feel nauseous?
Do I just want complete quiet?
Does riding in a car make me dizzy and nauseous?

Is it tiring just to try and talk with anyone?
Do I just want to be alone?
Am I missing taking my medication on time?
Have I quit setting goals?
Am I not thinking things out, prioritizing, or planning?
Am I just trying to get things done?
Am I not in charge of my own life?
Am I allowing others to think for me and trying to please them?
Am I unable to solve problems or make decisions?
Am I always worried if I will really be able to do something?
Have I quit doing things I enjoy?
Do I dwell on negative news and memories?
Am I too busy to enjoy nature - birds, sunsets, and sunshine?
Do I always feel pressured to get things done?
Do I have long to do lists and lots of notes around?
Do I just want to stop the merry-go-round and get off?
Does it feel like everything is coming at me too fast?
Do I never lie down to rest?
Do I not want to get up in the mornings?
Have I quit caring how I look or about keeping up the house?
Do I frequently feel that I just can’t handle life?
Do I long to just collapse so I can rest?
Do I just want to rest?

Other Possible Problems if you have Addison's Disease

When adding up my stresses, I’m learning that I have to consider other physical problems I might have.  Here are health problems which are common among people with Addison’s Disease.

Thyroid deficiency - 1/5 of all people with Addison’s have either low (most) or high thyroid (a few have hyperthyroidism);  this would effect your body temperature and energy levels

Anemia (low iron levels) and/or B12 deficiency - (atrophic gastritis); caused by damage to the stomach lining
This will make you feel more tired, depressed, and have trouble remembering
a B12 deficiency can cause permanent nerve damage

Celiac Disease - (gluten sensitivity- grains)
causes damage to small intestine
(70% of your immune system lines the small intestine and can be severely damaged by Celiac reactions to gluten)
damage results in malabsorbsion and malnutrition problems
and perhaps allergies and chemical sensitities

Hypotension (low blood pressure) - indicates severe stress and possible dehydration
Hypertension (high blood pressure) - indicates becoming stressed

Osteoporosis - can be caused by a too high of level of cortisone or by malaborbsion problems

Low DHEA (an adrenal hormone) - may cause PMS and menopause difficulties; little libido and little stamina; premature ovarian or testicular failure

Diabetes - insulin dependent; may have sensitivity and over reaction to insulin; may crave sweets

Asthma - may be result of damage to immune system

Diabetes Insipidus - produce lots of dilute urine

Parathyroid Deficiency - results in low calcium levels

70 % of Addison’s Disease is caused by auto immune reactions where the body attacks and destroys its own adrenal glands. Once you have one auto immune problem your body may continue to attack other parts of your body such as the thyroid, stomach, intestines, pancreas, or joints (rheumatoid arthritis).

Since the adrenal glands control the rest of the endocrine system (the pancreas. thyroid, parathyroid, and ovaries or testes), if the adrenals are low, the other glands may also be low functioning.

I must also consider other physical stresses such as: injuries, illness, lack of sleep, and extremes in temperatures. For instance, I’ve learned that  going out in below freezing temperatures requires more hydrocortisone.

The adrenal glands normally produce 26 hormones which help to maintain a state of well being in your body. We can replace the two main hormones produced by the adrenal glands: cortisone which helps to regulate blood sugar and blood pressure, and aldosterone which regulates blood pressure. Though these hormones are nearly identical to what you body normally makes, it is not the same. When you experience a stress, your body produces the necessary hormones in the right amounts and you feel fine. Mine doesn’t do anything. If I don’t take more medication, I will die of shock. Therefore my body is always under some stress and can quickly become over stressed. This is why I must keep aware of the stress my body is experiencing and learn to compensate by resting and increasing my hydrocortisone. If I do not, I will have an Adrenal Crisis.

Adrenal Crisis or steroid insufficiency

severe nausea
smashing headache
severe dizziness
extreme weakness
chills or fever