joyrose

Hi Everyone. It's just us in the room, right? OK.

Well, you can see by my medical history at the bottom of this frame that I've got a long and painful 30 years behind me in the 27 years of marriage. My husband knew that I wasn't strong and healthy, but he took me as I was.

Intimacy is your relationship with your mate, expressing it in the way of the golden rule-do unto others as they would to unto you. As much understanding and thoughtfulness as you want, make sure that you are remembering to give it.

Sex in the 27 years of our marriage has been wonderful and exciting, and we've had two children.

Sex is also other things too. Sometimes we've laughed the entire time.

I've also cried from beginning to end. I'm happy to be loved and I can't believe someone could love someone this sick, or my body hurts so much.

The act is an awesome gift that you can give to your mate. It doesn't have to look like a movie set, it just needs to be loving, even if you'd rather not be loved in this way right now.

We like to be loved by someone getting our meds, making a cup of tea, taking care of kids, earning money, rubbing our back... you name it.

Look at this person who loves you. Try to figure out what would make it the least painful for you and when you would be the least exhausted.

If it is your body that embarasses you, hiding undersweats and not being intimate doesn't help you or your mate. Your self confidence in whatever size body you are in today is what can work.

Even if your desire is low or non existent, you can still desire to please your mate. You can desire to see that smile that nobody else sees.

I have tried, in the last 27 years, to hardly ever say "no," or ever stop chasing him.

Now I've never shared any of this with anyone else and I'd appreciate it if it would stay just between us! Deb

Dear Melissa,

You deserve a merit badge for Effort because you have put out an extraordinary amount of strength just to "keep on keeping on." That is so tough.

I may be able to find someone to help you. You can email me and I'll give you my phone number. I care. Deb

That is such wonderful news. You have suffered for so many years and it must be so comforting to have someone to affirm your symptoms. Did she mention anything about an "abdominal migraine?" My neurologist will say, that when I have a headache and my gastro-intestinal system is completly off, I am in a migrainous state, a whole body migraine. Dr. Chelimsky is the head of Autonomic medicine at University Hosp. in Cleve. Ohio. He really knows about dysautonomia and trained under Dr. Low at Mayo.

Whatever it is that is causing your pain, I hope that you will soon find relief . -Deb

You have been through the wringer, haven't you? Whatever the diagnosis is, I just want you to be believed, be correctly diagnosed and find relief. Deb

Nina,

You sound like you are suffering so much. I've been hospitalized with sinus infections in the past and I know how terrible someone can feel. I hope that you can pull all your stretched parts together and huddle under a blanket and get better.

To clean out sinuses here's what I've done and I've never had a severe infection since I started doing this when one takes hold. I mix up some saline and put it in a dropper or the smallest bottle. The water should taste pretty salty. Lie down. You can put it in your nostrils now or you can spray a 12 hour decongestant first.

After each spray or drops, roll, back and forth, hang your head over (hear the wind blow )

If you can tolerate the decongestant, it will shrink those tissues and the saline will liquefy and wash out the matter that's filling up your head. It is unpleasant to feel the extra liquids in your sinus but doing this can bring great relief.

Nina, I hope you can sleep so your body can get better. -Deb

Dear, Dear Julia,

What a terrible, horrible day. I agree with the others about the position of your head and neck, combined with the trauma, maybe low fluids, and because of the discomfort, your were tightening up, maybe even holding your breath and doing a valsalva. Put it all together and it's "who needs nitrous oxide?"

I hope that you can snuggle up and take care of that sore tooth and see the doc soon to discuss what is going on. Here's a hug. -Deb

p.s. Hope you billed the dentist twice what he billed you.

I agree with Melissa. Your vision is precious and needs to be maintained and protected. Floaters are normal but when you have a neurological or any other medical issue complicating things, regular visits to the ophthalmologist (if you can see one rather than an optometrist) are in order. You won't regret it. -Deb

Dear Dana,

Welcome! You found us sooner rather than later which is a good thing so you can learn from us. Dysautonomia is a group of symptoms, and different for everyone. All of us can identify with the frustration of dealing with an uncooperative body. I care. -Deb

Dear Morgan's Husband,

You are doing a wonderful job of loving her and being sensitive to your familys' needs. Thank you for letting us know how she is. Take care of yourself too, and let her love comfort you in this time. -Debi

Nina

So glad to hear that things are working again. It's amazing what the rest of the world takes for granted with a little "flush!"

Oh, I know how you feel. I'm on morphine and have gastroparesis anyways. Glycolax sometimes does the trick. I don't want to write a blog but it becomes quite a daily focus, doesn't it?!!

---To hope-ful, I am so sorry that this has become such an overwhelming problem. You are smart to find some treats to enjoy.

---Ithomas, Stimulants full-time? Wouldn't that get to be the slow tolerance build-up and after a few years you'd need a handful? Or is that just the price we pay?

-Deb

Ha, Ha, Ha,

I laughed so hard when I saw this. I, of course, thought that I was the only one in the world with the "shower secret." When I read your postings I felt like I was sitting on a porch with everyone and we were laughing together, until our sides split. Somebody rolls up a pant leg, and pretty soon another round of giggles start.

What stories born out of such pitiful bodies. Aren't we quite a bunch? I'm glad that we have each other and that we can improvise in our need. -Deb

Oh Morgan. Isn't it always with great hope that we enter the hospital? I am sorry that you have to go in but I hope that your doctor, his great smile, and his great brain can help you make some progress. Rest up. I care. Deb

I take atenolol, clonidine, Topimax, morphine, Mestinon, Paxil, Robinul,

Then as needed: visatril, Zofran, Chloral hydrate, Ditropan,

I've been on massive doses on the first 2 drugs.

Since starting on the Chloral hydrate a month ago, I've been able to cut back on my paxil, morphine, ambien and doxepin. -Deb

Dennis,

Have you ever considered Reynaud's? It's a neurological problem and your hands and feet severely cold and white or even yellowish looking. So sorry that you are so miserable. Temperature fluctuations are hard. My doctor prescribed Robinul at bedtime and that helped. -Deb

Dear Nina,

You are so persistent.

You try so hard to find out the answers. You still keep dancing. -Deb

Dear Deb and everyone else who has suffered while looking into the eyes of a doctor,

I understand the pain and lost hopes of telling a neurologist or other specialist my whole story.

"Ah" "Umm" "Yes" He listens. I think..

Then he does the exam and when I remind him that my neck can't do that or my balance is way off (don't you remember? I just told you)

Afterward I wait. What's he going to say? I feel like a puppy. Am I a good patient? Does he like me? Does he believe me? How about my pain level? I hope I rated it so I was believable.

Well, that doctor finished up and said that I'd probably feel better if I was more active in my community. Depression was probably a big part of the illness. Have I meditated? We could start on Tylenol round the clock for pain (!!!!!!) and evaluate in 6 months at my next appt. By then he'd look at my X-rays (that had been in his office for weeks)

My eyes filled up with tears. He probably thought I was full of speechless admiration. That was the end of our relationship. I did meditate--about him on the way home as I passed the community center!

You know yourself, your mind and your body.

It is humiliating and it can intensify all of your pain when it is thrown back in your face. But remember, nobody can ever take away your dignity.

I care. -Deb Byrne

For our family, painful illness and suffering was always there but we learned the greatest lessons of our lives in those circumstances.

I was raised in a home where my mom was "sick" all the time. She was either in the hospital for an operation or she had migraines or something that made her hurt, later diagnosed to be fibromyalgia. My sister and brother and I grew up handling the home, comforting Mom and learning to be sensitive to those in pain.

When Mom could, she was organizing a non-profit ministry that could help families who were hurting.

My sister and I both have bodies that are in constant pain and have many of the problems she had but she didn't know when she young and first married. Every family has something. If it is not illness, then there are going to be other trials. There are difficult decisions.

The people we are most drawn to in life are usually the ones who have suffered the most and can use those experiences to comfort those around them. It's a process.

My sister became a social worker before she had her 3 children. The oldest has cystic fibrosis and my sister has spent the last 23 years taking care of her son, but she also takes care of me when she can and we laugh and cry more than any two sisters could.

My brother has 5 healthy children and they often are reaching out to families who have illness.

And me. I became an RN. I'm married to a man (an RN) who knew that I wasn't strong but he chose me. His love and example is priceless. I worked until we had our two sons. The second son was 3 months early and had barely a chance of living. No chance of normal. My health was so bad I had 12 surgeries in his first 10 years. I had pneumonia over and over.

Then I got POTS, autonomic neuropathy, peripheral neuropathy, autonomic dysfunction, recurrent spinal fluid leak, migraines, fibro, head injury, and seizures. My goal is to project graciousness throughout this time.

We taught the boys to value everyone and that "survival of the fittest" only applies to animals, not people.

We homeschooled them (yes, I wore my PJ's) in an attempt to keep our family together, so they could see that illness does not mean worthless.

Now, the oldest son is married and is an RN in a neonatal intensive care unit, taking care of premature babies in the same unit where his brother was for 3 months.

Our younger son, has had a rough time with his health but is now 20 years old and a senior in college.

It's a family with an extraordinary amount of pain and compassion. We cry. Pain hurts. It's been worth having kids. We knew our parents never regretted having us.

-Debi

Dear Nina,

Wow! He switched road signs on you. You're still going the same direction, in the same body but now you have a million more questions.

Have you had genetic confirmation of EDS? Even though you fit every one of the symptoms, what if? What if you didn't have it? Or, you're at square one ("oh no!") and have to once again go over your history like you were going on display in the Smithsonian.

You have read and studied so much that if there is a link eventually it's going to dawn on you and you are going to see patterns...

I know that you are doing your best. -Deb

The autonomic nerves are some of the tiny peripheral nerves. When they any nerves are in bad shape they can be numb or tingly or painful. My feet and legs have areas of numbness, yet some days I have such pain that is like a sunburn. I have a peripheral neuropathy.

If you are tripping on your own feet, it's probably more than just the skin being numb, but that certainly must contribute. Are you having trouble with balance, or sensing where your body parts are? I know, this is upsetting.

It might be a good idea to take your blood pressure with an automatic cuff and write it down in a notebook. that way you'll know whether it is the POTS that's causing your falls or else it's a combination of other things. You are the best detective. That way you can collect the clues and give them to the doctor and you work together. Sorry you feel so yucky. -Deb

Dear Emily,

Those are some significant bumps and are signs that there is something wrong. Your doctor needs to know before your symptoms snowball.

A rash like that is not an autonomic-like reaction. If it looks like chicken pox, your doctor may consider shingles, a rebirth of the childhood illness that's been sleeping in your nerve all of these years. Usually, however, the bumps hurt terribly.

Hope you feel better. -Deb

We wondered where

You were, dear Poohbear.

Poor Pooh, Poor You.

Our friend we value.

Refill your honey jug.

I send you a little hug.

Deb

Thanks for asking for support. I've prayed for you this evening and will remember you tomorrow. -Deb

For Joyrose, I wanted something that expressed the depth of joy that I have in my heart. I love to touch, smell, paint, photogragh, and arrange roses.

Do not grieve, for the joy of the Lord is your strength." Nehemiah 10:8

Deb,

By any chance, do you take Topimax? One of its side effects is hyperthermia. Another is that is can reduce or even stop the amount of your sweating. All of this would make you crave water but not get the desired effects. -Deb

Oh, dear Nina. Did you check for centipedes before answering the door? It would be quite effective you know, to show him exactly how miserable it was. A cobweb in your hair, a centipede in your palm as you shook his hand.

Seriously, the heat, the cold, it is all so hard to take and our appliances are not just conveniences. Thanks for venting. Good for you for having the good sense to outline the paper in your head. A++++ -Deb