QUESTIONS BUT NO ANSWERS.....YET

So, what is it?

Will they ever know?

Or do I just continue to question?

I'm really sick of going to doctors. I guess what I mean to say is that I'm sick of feeling so lousy that I have no choice but to go to the doctor. I have to say one thing. I do have a great doctor. He's very curious and he believes me when I tell him that I feel lousy. This, however, means going for more blood tests.

Do I have any blood left?

After 18 vials...........

Evidently, my thyroid is still borderline. The autoimmune thyroiditis is in full force. Plus, the thyroglobulin ab is very high. They found a nodule in my thyroid. So now I have to go through another ultrasound and then if it's growing there's another fun test. I've been through a few of them already and the nodules just keep getting bigger. Tomorrow, if it has grown again I get to move up in the ranks of testing. What test? A biopsy. If that happens I think I'd actually be relieved. At least then I'd know why I feel the way I do. 

The problem is the symptoms are so intertwined.

I don't know if it's the thyroid or the Fibromyalgia. 

The fatigue is overpowering. I won't even count the pain because that is always with me. It's just that my hands have hurt more than usual. I don't think its the Fibro because I just feel so..........

Different.

I asked her why I can't lose weight. She stated I need to eat less calories. I told her that at, at best, I eat between 1200 and 1500 calories a day. Her advice? Go down to about 700. Do you believe that one????? She's a doctor????

I'm just tired of blood work being out of range and the endocrinologist shrugs her shoulders. 

If the nodule has grown again and nothing is done....

If she shrugs her shoulders again............

I'm going to another doctor.

Pronto.

THE YUCK FACTOR

Well,

it seems like it's back to the drawing board.

Let's hope this works.

I'm really sick of going to doctors. I guess what I mean to say is that I'm sick of feeling so lousy that I have no choice but to go to the doctor. I have to say one thing. I do have a great doctor. He's very curious and he believes me when I tell him that I feel lousy. This, however, means going for more blood tests.

Do I have any blood left?

After 17 vials...........

Evidently, my thyroid is still borderline. 

The autoimmune thyroiditis is in full force.

Everything else? Right on target.

However, they found a nodule in my thyroid. So now I have to go through another ultrasound and then if it's growing there's another fun test. A biopsy. If that happens I think I'd actually be relieved. At least then I'd know why I feel the way I do. 

The problem is the symptoms are so intertwined.

I don't know if it's the thyroid or the Fibromyalgia. 

The fatigue is overpowering. I won't even count the pain because that is always with me. It's just that my hands have hurt more than usual. I don't think its the Fibro because I just feel so..........

Different.

I gave in and went to the endocrinologist. More blood work and I'm back on the Armour Thyroid. I did feel better on this when it was prescribed to me a year ago. Hopefully this will pull me out of the constant feeling of yuck. Why they felt the need to change it is beyond me. 

The symptoms of hypothyroid and Fibromyalgia are SO close. How do I know this isn't Fibromyalgia? For one thing.....my hair. It's very dry and thinning out. The doctor said the Cytomel will do that. Why in the heck did they ever prescribe it? I know it's more precise than Armour Thyroid but it can't be that big of a difference. The other thing is that my skin is much drier. 

Try peeling off the tips of my fingertips. 

The scary thing is that no amount of lotion or cream would stop it. I even got steroid shots but that didn't work either. The only thing the shot seemed to do is make me gain 5 lbs. overnight and that does not work for me. Finally my manicurist gave me some lotion from Vietnam and, believe this, it helped it within three days. Three days later.......it was GONE.

Now I can get my nails done again. 

That problem is fixed.

Now........

All I care about is that I lose weight......

and the fatigue........

and the joint pain.........

and the weight........

THE FIBROMYALGIA SERIES PART I

It's Fibromyalgia Awareness month.
Invisible?
Yes, we are.

I - is for Invisible Illness. We look fine so we can't be sick. It's those lovely little Lyrica commercials that make Fibromyalgia look like a pesky little bug that we can flick off our shoulder and, voila! Life goes back to normal. I don't know whether that commercial has helped us become more visible or it's hurt the cause.

I - is for isolation. Because we don't know what the day will bring we tend to feel isolated. Chronic pain brings it's own type of isolation as well. I know that I get tired of hearing the question, "how do you feel?" I can only imagine what the person asking the question must feel like. I dread giving the answer and I'm certain they dread hearing it. Again.

I - is for impatient. I get impatient with my body but I'm more impatient with my mind on the days that the "fog" has set in with a vengeance. My mirror is full of sticky note reminders. My phone has a calendar that has appointments and notes to self in there. Do I remember to look at either the mirror or the phone? I don't remember.

I - is for irritation. That above mentioned impatience also leads to irritation. Those appointments I forgot about? Well, as I'm looking for my keys to run to them, AT THE LAST MINUTE, that leads to being very irritated with myself that I can't remember to check the calendar to see what the day will bring. 

I - is for inarticulate. That lovely little fog that keeps me searching for words. That same fog that makes me lose my train of thought right in the middle of a sentence giving me that lovely, glowing, deer-in-the-headlight look.

I - is for intelligence. I used to have some.

I - is for individual. This same illness which plagues so many of us cannot be defined in the same way for every person. The same medication that works for me may not work for you. Which brings me back to physicians who need to treat you like an individual and not throw some antidepressants at you and show you the door.

I - is for illogical. The way my body reacts to anything anymore is just plain illogical. What the heck is this new symptom popping up? 

I - is for I. 

I am still invisible because I don't want to appear different than I used to be.

I am still strong.

I am still weak.

I am still me.

I am still chronic illness.

RUNNING ON EMPTY

Just what I feel like.

Just what I'm doing.

I have been dealing with the puzzle of a thyroid that's attacking itself, nodules on my thyroid and a lovely flare that has knocked me on my fanny.

I can't seem to keep my eyes open. I've been sleeping 12-14 hours a day. Normally, I wouldn't mind that but it's been forced on me. My skin looks like alligator skin and it has started to itch. There's a little difficulty swallowing but the one doctor I went to "isn't real concerned about it."

ISN'T REAL CONCERNED?

I feel like crap. 

Let me rephrase.

I feel like something that crap brought in. 

So let's examine the evidence. 

I'm real tired. I'm tired enough that I can fall asleep mid-sentence. 

I'm moving so slow that a slug moves at mach speed.

I feel like I'm going through menopause again. One minute I'm hot and the next I'm cold.

I'm going through lotion like crazy but still have that alligator look.

I'm gaining weight. (THAT IS BAD. I CAN DEAL WITH THE REST BUT THIS????)

I ache more than usual.

My skin is peeling underneath my nails.

My hair is shedding worse than Buster's.

I'm craving carbs. (Ok.....so what??)

I can't remember my own name at times.

I feel like a vampire because I hate the light.

All of this points to problems with the thyroid. This brings me to an interesting topic that I'll write when I can pick my head up. The symptoms of thyroid problems mimick Fibromyalgia.

So I'll write....

What came first the chicken or the egg?

Thyroid of Fibro??

I'm going back to bed.

THIRTY THINGS: INVISIBLE ILLNESS WEEK

Thirty things about ....

my invisible illness....

that you may not know.....

It's Invisible Illness Awareness Week and I read a very cool list about invisible illness on Judy Westerfield's blog, "CreativitytotheMax." It was amazing to read her answers because it was almost like she read my mind. I'm going to attempt to do the same thing. Now, I'm not going to look at the questions from her blog but let's see if I can do this without plagiarizing!! If they sound alike I'm going to apologize in advance to Judy and Max.

1. The Illness I live with is:  I was diagnosed with Fibromyalgia, Autoimmune Hashimoto's Thyroiditis and Chronic Fatigue. 

2. I was diagnosed with it in:  I was diagnosed with Chronic Fatigue in 1988 after a nasty bout with mono that never went away and Fibromyalgia and Hashimoto's in 2008.

3. But I've had symptoms since:  I had mono in 1988 after my former husband and I went to Squaw Valley on a ski trip. I had no idea that is where it started. I was under control by 1994 and worked until 2008 when I had a nasty car accident and the pain "never went away."

4. The biggest adjustment that I've had to make:  I'd say the biggest adjustment that I've had to make is not working in new home sales. I really loved it and miss it. 

5. Most people assume:  Most people assume that I am an extrovert because of my career in sales. I think I fall into both extrovert and introvert groups. I do well with people but after a day of that I am done. I don't want to answer the phone or see people. I have a foot in both camps. 

6. The hardest thing about mornings is:  Let's face it. I've NEVER been a morning person. EVER. Having said that......ever since the Fibromyalgia hit I not only have to deal with not liking mornings but I also am like the tin man before the can of oil. Every bone in my body hurts and the stiffness in my muscles makes me a real peach. I need caffeine to get the cobwebs out.

7.  My favorite medical TV shows are: Well, I love Doctor Oz. Other than that I'm not big in the medical shows. I favor crime dramas like Criminal Minds and NCIS.

8. A gadget I couldn't live without is my:  Well, that has to be my iPad hands down. That little baby is easy to lift and carry around. I love it.

9. The hardest part about nights are: Muscle spasms. I want to take a baseball bat to my legs. It feels like winding up a spring real tight, letting it go and starting up all over again.

10. Each day I take ( ) pills:  I don't take many because I've found that they don't work for me. I tried Lyrica and gabapentin and gained so much weight that I quit them. It wasn't bad enough that I hurt all the time but when I looked in the mirror I decided that I'd take the pain rather than the weight. I take a lot of supplements though.

11. Regarding alternative treatments:  I haven't done many. I just figure that I'll take what I need to cope with the pain. Massage is always nice but, mostly, I can't stand to have someone rub my muscles like that. It hurts too much. I like essential oils for sleep but do they work? I don't know. I figure they can't hurt.

12. If I had to choose between an invisible or visible illness I would choose:  I wouldn't choose to have either one. If I have to choose I guess it depends on the illness.

13. Regarding work and career:   I had to leave it in 2009. I just couldn't take the rigor of new home sales. I miss doing something.......that's why blogging saved me. It gives me an avenue where I don't feel like as much of a slug.

14. People would be surprised to know: Would I surprise anyone? I don't think so. Most people I know would say, "I'm not surprised" to anything that I could come up with.

15. The hardest thing to accept about my new reality is:  The hardest thing to accept is that this is what it is. It's hard to wrap my head around the word "chronic." I've always believed that it would go away. It won't.

16. Something I never thought that I could do with my illness that I did was: I ran a 5k. Well, I kind of ran it but I finished it with my daughter. Despite the pain I still work out. I'd like to say that whoever said that exercise helps the pain is lying. It doesn't but I do it anyway. I'm still waiting for it to help. What it does is help me cope and makes my mind better.

17. The commercials about my illness:  The commercials really piss me off. Just take our little pill and your life will magically come back. Never mind that pesky little side effect like weight gain or suicidal thoughts.

18. Something I really miss doing since I was diagnosed is:  I miss working. I miss going at mach two with my hair on fire.

19. It was really hard to give up:  Working. Giving up that made me give up a lot of things. It sucks.

20. A new hobby that I've taken up since my diagnosis is: Nothing new. I didn't have that many before and I still do them. Cooking and photography. I can still do that.

21. If I could have one day of feeling normal I would: Probably be so grateful that I'd be still and enjoy it. Who am I kidding.....I'd want to run and shop and play till I dropped!

22. My illness has taught me: My illness has taught me to appreciate my body. It cannot be constantly assaulted and abused. I thought I thrived on stress. I was wrong.

23. Want to know a secret? One thing people say that gets under my skin is:   One thing?  How about  "Well, I get tired too." or "It can't hurt that bad," or "If you just get up and move around you'll feel better."

24. I love it when people: Don't treat me any differently than they did before but understand when I say I don't feel well enough to go out.

25. My favorite motto, quote or scripture that gets me through tough times is:  I always say, "it could be worse."

26. When someone is diagnosed I'd like to tell them:  You will get a lot of opinions about your health and how to feel better. Some will work, some won't. Listen to your own body and know that the advice is well-intentioned.

27. Something that has surprised me about living with this illness:  The one thing that has surprised me is how many doctors are flat out stupid and have zero to no compassion about pain and Fibromyalgia.

28. The nicest thing that someone did for me when I wasn't feeling well was:  They didn't question it they just shut out the lights and let me go back to sleep. Then when I could handle it made me get out of bed and get my fanny moving because they knew I needed that too.

29. I'm involved with Invisible Illness week because:  We not only deal with it on a daily basis but I know I help perpetuate it because when people ask how I feel I always say, "fine."

30. The fact that you read this makes me feel: Happy. Useful. Accomplished. Grateful.

INVISIBLE ILLNESS AWARENESS WEEK

MICROBES HAVE BROTHERS

For every microbe you see.

There are a million that you don't.

I learned something new. I was reading an article out of the Costco Connection magazine about Fibromyalgia. What caught my eye was something that I'd never seen before.

Fibromyalgia was classified as an autoimmune disorder.

This really strikes a chord with me. I have a thyroid issue but along with that tags along Autoimmune Hashimoto's Thyroiditis. I also found a spinal issue that I have also on the list. But, to my amazement Fibromyalgia and Chronic Fatigue are also on that list. I'm going to add links to these lists as well. Just click here. We have enough trouble being believed in the medical community, now I find it's classified as an autoimmune disorder??

Why can't someone get this straight?

Like I said, where one autoimmune disease lurks another one is sure to follow. Something always felt wrong about this being a "syndrome" and muscular in nature. Now, things are becoming a little clearer. According to the Marshall Protocol Knowledge Base, a research foundation that deals in autoimmune disorders, our immune system becomes compromised by the very nature of chronic illness. All of our symptoms are so intertwined with other known diseases and illnesses. Is it any wonder that no one knows what the heck is going on with our bodies?

Least of all us.

Is it an issue with the HPA axis? The Hypothalamus, Pituitary and Adrenal axis does interact with the immune system and the control of pain. Let's not even get started on the stress effect. So what does all this interaction tell us?

It tells me we are really screwed up somewhere.

Generally Fibromyalgia is regarded as a noninflammatory and non autoimmune but some show evidence of autoimmunity. Also, in autoimmune diseases, there is evidence of Fibromyalgia. It can drive you crazy looking at all the articles regarding this disease. 

I feel like I'm going in circles.

No, it's more like a maze.

More twists and turns and you can't get out.

AUTOIMMUNE HASHIMOTOS THYROIDITIS

Image via Wikipedia

Hashimoto's Thyroiditis.

The extreme fatigue, muscle cramps, thinning eyebrows, vague joint pain, cold hands and feet, low body temperature, depression, weight gain and the ever-present lack of concentration.

It seems that this has been going on for quite some time. The confusing part is that the normal thyroid panel that is run was in the normal range. I guess the most people have one or the other. I have Hashimoto's thyroiditis and a very high rate of reverse T3. This is basically your fake parking spot for the thyroid hormone but it doesn't know what to do when it gets there. It would figure that I'd have both.

It is inherited. I don't know that much about my medical history but at least I know that I did get this lovely gene from my mother. When I found this out I immediately alerted my daughter to get these blood tests because she has some of the same fishy symptoms.

Image via Wikipedia

The thyroid is a little butterfly shaped gland located at the base of the neck and it wraps itself around the windpipe. Slight trouble swallowing could occur if the thyroid gets inflamed and presses upon the esophagus.

This is an autoimmune disease. Your bodies own T-cells are attacking the thyroid and treating it as a foreign entity. If left untreated this can eventually lead to heart failure. Thank goodness my homocystine levels (a marker for cardiovascular disease) was very low.

The reverse T3 was very interesting. It seems that the body, in reaction to either physical or emotionally prolonged stressful periods will increase the levels of Reverse T3. This is probably the reason for weight gain. A lot of times medication addressing the active T3 levels will allow weight loss without a lot of dietary changes.

Now without insurance the medication for bioidentical thyroid, hormones, progesterone and testosterone was $262.00. How in the world do people do this every month??

Great. More stress. Just what my body needs. I do feel slightly validated. At least I know I'm not crazy about the symptoms. You know that you know that you know but no doctor will believe you or get the appropriate tests to find out what's going on in your body. Then this disease slowly progresses until you feel like a lump. A big, fat lump.

The good old fibro cake is baking and the icing is the thyroid.

THE MAKING OF THE FIBRO CAKE

It's amazing how a chronic illness can change you. You make plans and your body seems to sense that you need something else. You want to go beyond the borders of this invisible disease and right away, your body will betray you. The plans I now make are filled with exit contingencies, attendance caveats and anything else I can possible think of so that if the pain is unmanageable, I don't have to go.

Chronic pain chips away at the person called ME. It changes you. Some changes are for the worse and a few are for the better. I think I've realized what I want and who I am however the implementation gets a little fuzzy. So as the humidity rises and falls, I am again incapacitated.

Most people have no clue about this invisible illness. First and foremost there's the pain, then the unrelenting fatigue, the ever-annoying brain fog. I have low body temperature ( 97.1), low blood pressure, leg spasms that make me want to take a baseball bat to them. I feel like a vampire because my eyes are so sensitive to light. I am a human barometer. I struggle to remember information and do memory puzzles so that the few brain cells that I have I want to keep. Then there's sleep. What sleep?

Trigger points are tender? Sounds like chicken. Forget it, they hurt like hell. There are days, like today, that I can't stand to even be touched.

So lets make this Fibro cake.

Let's take the Type A personality

Add some obsessive compulsive tendencies

Add a dash of perfectionism

Throw in changes in lifestyle, divorce and subsequent financial issues

Mix well

Then add high pressure selling, hard and long hours and endless quotas.

Let this simmer for years.

Add menopause, mononucleosis, accident trauma.......

Finally it's done.

Fibromyalgia and Chronic Fatigue will be served up momentarily.