Category Archives: Quality of Life

God’s Healing Sunlight

Day by Day with a Movement Disorder Posted on March 31, 2018 by  

Healing Sunlight

When I left off in my last post, I had just been diagnosed with my second MRSA infection. And that was right after getting over a Strep infection. So I had a very sick winter. Thank goodness we’ve had some early Spring days, and I’ve been able to get out and sunbathe several times already. God’s healing sunlight has helped tremendously in making me feel better and stronger. Even on cloudy days when I can’t sunbathe, I’m back to walking around the house several times a day. I can feel the strength slowly come back. And I truly believe the sunlight has a lot to do with it.

I have continued to use my RubyLux sunlamp arrangement I’ve set up in the small bathroom, along with the SAD light and the 860mm infra-red light. They got me through the winter, and I can tell they help. But good ole SUN just makes a huge difference for me.

I had routine blood work done recently, and my vitamin D level is very good. I went back on a supplement in the fall. Hopefully I can stop taking it once we get lots of pretty days, and I’m able to sunbathe almost every day.

Sleep Still an Issue

I started having trouble staying asleep somewhere back this winter while I was sick, and I haven’t found a way to solve it yet. I would fall asleep quite easily, but then I would wake up to go to the bathroom and it took hours to get back to sleep. Eventually I just waited for a while and then got up and worked on the computer until time to get up. I’m now making myself stay still and just lie there until I finally do go back to sleep. But my actual number of hours sleeping are too interrupted to be very restful.

Circadian Rhythm Strategies

I’ve worked really hard to use as many of The Energy Blueprint* strategies as I can to improve my Circadian Rhythm. I wake up to the birds singing outside every morning, and I get bright sunshine in my early morning walk. When it’s cloudy, I use the SAD light in my bathroom sauna setup. I usually walk around the house several times a day, too, so I’m getting plenty of sunlight and fresh air, and as much exercise as I can tolerate.

I use blue blocker glasses and a blue light app on my computer and Kindle at night. We use room darkening curtains and red light flashlights if we get up in the night. And I don’t have anything to eat for about five hours before bed. We cool the house down after 8PM all year round. We have a bedtime routine and a regular bed and wake up time. I turn off the WiFi at bedtime, too, and we don’t have any electronics on during sleep.  I’d hate to think how little sleep I’d be getting if I weren’t doing all that.

Constant Headache

Somewhere along the way, a couple of months or so ago now, I started having a headache every day. Sometimes I wake up with it, but it usually starts between about 10AM and noon. Then it goes on until I fall asleep at night. I can ease it some with a hot pad on my neck, and I can distract myself from it while I’m busy during the day. But it’s still there, getting worse as the day goes on.

So I finally gave in and started taking Goody Powders, even though I know I shouldn’t. After using them several weeks, I stopped the Goody Powders. I figured it had probably turned into a rebound headache by then. I toughed out two weeks, but the headache never stopped. So I’ve gone back to one Goody Powder before lunch for now. And yes, I know that is toxic to my body and doesn’t help with sleep issues. But nothing I have tried in the way of stress relief or sleep strategies has stopped the headaches so far.

Doctors

I’ve made an appointment with my Neurologist. I’m hoping to get a referral to a Sleep Specialist doctor I saw years ago when they thought I had Parkinson’s. I weighed 50+ pounds more back then, and I was diagnosed as having Sleep Apnea at that time. I have dealt with urinary incontinence for quite a few years now, and that might be the problem. The brain is supposed to tell the kidneys to stop making so much urine during sleep. It sure doesn’t seem like THAT is working properly! I don’t know what’s causing all these sleep issues, but I do know I need help fixing them.

Immune System Issues, Slowly Recuperating

Day by Day with a Movement Disorder Posted on January 25, 2018 by  

Immune System Takes a Hit

My immune system has certainly taken a hit in the last six weeks or so. Back around Thanksgiving I came down with a bad sinus infection that turned out to be MRSA. The skull base surgeon put me on a powerful antibiotic. Then, the day before I finished the round of that antibiotic, I was diagnosed by my Primary Doctor with a strep throat. So that meant another round of antibiotics. I always take a probiotic, so at least I didn’t have to deal with a yeast infection!

It’s been a long time since I’ve run a fever, but I sure did with these infections. I didn’t feel like doing much of anything. The bad part about it was that dear hubby was also sick with the crud that’s going around in our town. It’s not the flu, but the coughing fits seem to go on forever and the whole mess lasts for several weeks. So he didn’t feel like taking care of me, and I didn’t feel like taking care of him. The poor cats were lucky to be fed LOL. I stayed out of church for several weeks, and we didn’t even go out to eat, either.

Anyway, we’re both pretty much over our infections, and he’s more or less back to normal. I, on the other hand, have been so weak it’s all I’ve been able to do to walk around to do what just had to be done. I had cut way back on my food intake while I was running such a high fever. Food doesn’t taste that good now, anyway, thanks to my sense of smell being so limited for the last couple of years. But the thought of fixing any food was just too much. So, I lost about 5 pounds.

Now it’s time to work to get my immune system working properly again. I’ve gradually returned to the good nutrition I was used to eating. Our diet is based on whole foods, mostly plants, as The Energy Blueprint* program I’m following recommends. I have increased my protein intake, too. I had stayed away from kefir while I had a fever. Dairy products just didn’t sound like a good idea then. Now I’m back to making kefir for the probiotics and growing broccoli sprouts for the phytonutrients every day.

Not Exercising Yet

Up until the last couple of days, I didn’t dare try anything that resembled exercising. Just absolutely necessary walking and standing in the house was quite enough to exhaust me. But now I’ve started being more active. I haven’t vacuumed the house yet, but I did walk once around the yard yesterday and today. I had gradually worked up to 8 laps around the house (about a quarter mile total) prior to getting sick, so it will be awhile before I get back to that point.

And I haven’t been to the gym at all since before Thanksgiving. Maybe next week I’ll try going long enough to at least use the recumbent bike for maybe 10 minutes and then relax on the water massage machine. I have a free membership to a Silver Sneakers gym, thanks to my health insurance. Getting more exercise will improve my immune system and a great way to increase my mitochondrial health.

DIY Sauna

I had stopped using my DIY infra-red sauna setup, too. I was just too weak to dare use the heat lamps for fear I’d faint. But I have now started gradually using it again. And I’m almost back to my full Energy Blueprint* light routine now. The small bathroom now has my 3 infra-red lamps setup that is meant to help with detoxing and increasing cellular energy. I’ve moved the 10,000 lux full spectrum lamp that helps to set my Circadian Rhythm and prevent Seasonal Affective Disorder in there, too. At my skull base surgeon’s insistence, I’ve also started back smelling the essential oils while I’m using the sauna. He still feels like I can get my smell back if I keep working at it.

AND I’ve recently added dry brushing my skin to my sauna routine as a way to improve my circulation. It’s supposed to help with detoxing under the infra-red lamps, too. All the while I’m doing the rotisserie chicken imitation under the red lights and white light, so I can get all the benefits at the same time.

I also recently purchased a special 850 nm wavelength light panel that The Energy Blueprint* recommended. That wavelength increases the photobiomodulation that is supposed to increase my mitochondrial energy. I’m only standing close to it for about 5 minutes or so each day. I want to increase my exposure very slowly, so I get the benefits without causing any issues for my mitochondria.

All the time I’m in my sauna I’m usually listening to a health related podcast or learning a stress relieving breathing program. I pack a lot into that 30 minutes of me time.

Working at Getting Better

So my immune system was hard hit with one infection after another. But I’m gradually improving and feeling more like putting in the work to improve my mitochondrial function. Now to just get myself back to where I was this Summer!!

Oh NO! Revision

Well, I just got a call back from the skull base surgeon’s office. I had a “routine” visit with him last week, and they took another culture. I STILL have MRSA – so now 3 more weeks of antibiotics. UGH!

Cold Intolerance

Day by Day with a Movement Disorder Posted on November 18, 2017 by  

We bought The Energy Blueprint* program to learn strategies to increase my mitochondrial energy. The doctors told me in 2011, when I was diagnosed with Mitochondrial Myopathy, that there was no treatment and no cure. My Neurologist suggested several supplements that might help, and I’ve been on them for years. But I’ve had very low energy and poor muscle strength all those years, too. And my extreme cold intolerance has been a real problem.

I’m ecstatic that I am seeing so much improvement in my energy level and cold intolerance now that I’ve implemented just some of the EB strategies!

Sunbathing and Sauna

The most surprising lifestyle change I’ve made is to start sunbathing at midday! I have had cold intolerance for many years. So my normal habit has been to wear a long sleeve jacket year round – in the air conditioned house and outside of the house. That was even in the Alabama Summers! I was miserable all Winter.

So for this pasty white old lady to buy a bathing suit and lay out in the sun meant starting super slowly – maybe a minute to a side to start with. It took a while to work up to the 30 minutes I can now enjoy. And, just as the program explained, it has given me a tremendous amount of energy. And, for the first time in my life, I have a tan! Someone at church complimented me on wearing makeup (I do not). I laughed when I told her it was my tan.

When sunbathing is not possible, thanks to the weather, I have a DIY sauna setup in the bathroom. I use three RubyLux 850nm infra-red bulbs and a small ceramic heater. It doesn’t help with my tan, but it is supposed to be energizing. The process is called photobiomodulation. The heat feels great, although I’m building up gradually. I sure don’t want to get burned. I’ve worked up to about 15 minutes a day. I don’t sweat, even though the room gets up in the 80’s, and I exercise some while in there. Ideally the room should be much hotter, but it’s make-shift at best. Sweating is one of the ways to get toxins out of the body. So I’m hoping with time I will start sweating again and get more benefits.

Cold Intolerance

I wasn’t expecting to see a difference in my cold intolerance, but I’m making progress. I don’t have to bundle up with a blanket all the way to my chin to sit through church every time any more. I still wear thermal underwear and double socks for church, but now I usually only drape the blanket across my legs to block the draft under the pews.

It remains to be seen how my body will handle the cold Winter weather. I am still walking in the mornings, if it’s not raining. Previously I would never have even considered being outside in 60° weather for any longer than absolutely necessary. It was always a hurried pace to get to and from the car. Now I can walk about a quarter mile, even in the cold air. That’s a gigantic improvement for me.

I continue to praise God for His healing hand, for leading us to this program, and for the wonderful joy of feeling better!

Improving My Circadian Rhythm

Day by Day with a Movement Disorder Posted on November 7, 2017 by 2

I’ve learned a lot in The Energy Blueprint* about improving my Circadian Rhythm. (There are several introductory videos that are free, if you are interested in learning more about this program.) The program has several lengthy discussions on the benefits and issues with different light frequencies. The author, Ari Whitten, shares lots of scientific studies to back up his strategies. I certainly don’t understand all of what I’ve seen, but I have successfully used several of his suggested strategies.

Sleep Strategies

It didn’t take a program to tell me that improving my Circadian Rhythm was a top priority! I wasn’t sleeping much at all after my last sinus surgery. I was on high steroid doses for a month, so sleeping more than a few hours a night was unusual.

So I started implementing strategies from the Energy Blueprint. I bought the blue blocker glasses to limit the blue light frequencies for several hours before bed. That way the lights in the house, and especially the TV light and computer light, were not signalling my brain that it was still daylight. I stopped using the computer and Kindle after 7PM. I bought room darkening drapes to get the room darker for sleep. And I’ve covered up with black electrical tape all the little blue lights that are all over the house. I bought a red light bulb to use as a night light in the bathroom. And we now use red light flashlights to navigate in the pitch black house to use the bathroom during the night. The red light does not stimulate the brain to think it’s time to get up. It’s more like the firelight our ancestors used at night.

Backsliding

I saw a dramatic improvement in my sleep habits for quite a while after working on improving my Circadian Rhythm. But I’m sorry to say I’ve gone back to the old habit of waking up to go to the bathroom. That’s a problem for me, because I can’t get back to sleep.. At least I have more of an arsenal of weapons to get this terrible habit stopped again. I’m taking a Benadryl at night to help temporarily (NOT part of the EB program!), and I’ve increased my daytime activity level as much as my muscles will allow at this time.

I think part of the return of the problem is that it is getting harder to find a day when I can sunbathe. It’s now either too cloudy or too chilly on more days than not. So I’m using the RubyLux infra-red lamps in my make-shift sauna to try and make up for it. It’s obviously not working as well as the natural sunlight in improving my Circadian Rhythm and increasing my mitochondrial energy, but it’s better than nothing. The best way to accomplish this would be to use an infra-red sauna – but that’s out of our price range.

Seasonal Changes

I’m also using a 10,000 lux full spectrum light therapy box I bought on Amazon in the mornings now, even if I go outside and walk in the morning. Too often lately the sky has been so cloudy that I know I’m not getting enough of the blue light that signals, “It’s Daytime!” to my brain. And then the clock change hasn’t helped things, either. I’m struggling to stay awake at night until a decent bedtime, and that’s causing me to wake up earlier than I should.

Improving My Circadian Rhythm

So I’ve kind of made two steps forward and one step backwards when it comes to improving my Circadian Rhythm. I’ll continue to add more of the EB strategies and hopefully get more of the many benefits of better sleep.

Lifestyle Changes = Feeling Great

Day by Day with a Movement Disorder Posted on October 5, 2017 by 8

I’ve made a lot of lifestyle changes over the last few months, and I’m feeling better than I have in years.

Exercising Again

As part of the changes I’ve been making, based on The Energy Blueprint Program*, I’ve gradually increased my activity level over the last few months. I can now walk briskly around the perimeter of our yard four times – maybe 1600 feet. When I started, walking 50 feet wore me out. Hubby and I have used Handicap stickers for years, and we’ve always needed them. With his paralyzed leg, hubby still needs his. Me…. not so much. THAT’s a huge improvement for me.

I’ve also found online a Qigong program that suits me, called the Satori Method Flow Form. The Sensei teaches a Westernized version of the Asian practice. And he’s a good teacher. I used to do Tai Chi regularly. But I quit practicing it as I got weaker, and eventually I forgot how to do the forms. This time, I had a lot of tension from the high powered steroids I was on after surgery. I was considering getting a series of massages as a way to relax and stop the insomnia.  Buying this program seemed to be a better use of the money to me. And I’m glad I did.

I’m still learning how to do this method, but the downloaded lessons are well done and only cover a few moves at a time. Plus there is a practice video for each section. That way I can work on the forms a little at a time and then try to follow as the pieces are put together. The squatting leg movements have done a lot to strengthen my legs, but I still have a long way to go before I can practice for 30 minutes without being worn slap out. But even though I’m tired, and even a little sweaty by the time I stop, I’m very relaxed.

Nutrition Improved

Ari Whitten, the originator of the Energy Blueprint, does not advocate any particular diet style, other than to emphasize a Whole Food Plant Based diet, preferably organic. He leaves the choice to eat meat or not up to the individual, but really does emphasize that any meat needs to be grass fed and hormone free. We haven’t made the change to organic yet. He really emphasizes eating large numbers of raw vegetables and fruits, so we’ve greatly increased the size of our usual lunchtime salad. I’m also eating something fermented at every meal. I’ve even learned how to make kefir and sauerkraut, and I add home grown broccoli sprouts to every meal as well – even breakfast!

Mitochondrial Energy Increased

Energy Blueprint explains many scientifically researched strategies that directly increase the energy level that the mitochondria create in the cells. I’ve consistently been sunbathing since learning that this will increase my energy without having to eat more calories. And I can definitely testify that it is working for me.

Since sunbathing will be out of the question once the cold weather comes to Alabama, I have also made a home-made version of an infra-red sauna in our bathroom. I Googled DIY sauna to come up with something that works for me. I can use this regardless of the weather or season.

Since I have had cold intolerance for many years now – a common symptom of Mitochondrial Disease – the heat feels fantastic. And it’s been so long since I could sweat, I know that’s helping me heal. Hopefully I’m getting rid of some toxins that are released in sweat, but don’t leave the body any other way.

Lifestyle Changes Making a Noticeable Difference

A lot of people at church have been asking me lately how I feel. I think it’s because my tan makes me look healthier, and I’m walking so much better! It’s wonderful to be able to say I’m feeling better than I have in years!

Thanks be to God for his Healing Hand in leading me to the right surgeon to deal with my serious sinus infection and bone overgrowth. And we thank Him for making us aware of the Energy Blueprint Program. Because of that program I’ve made a lot of positive lifestyle changes. I plan to continue gradually making changes the program suggests to improve my mitochondrial function. The reward of feeling so good makes the new lifestyle changes worthwhile, even though it means changing habits of a lifetime!

 

 

IMPROVING!

Day by Day with a Movement Disorder Posted on September 16, 2017 by  

Improving a LOT

I’m really improving, and it’s only been six weeks since my skull base surgery! I saw my own ENT this week to have more debriding done to remove crusting in the nose and sinuses. This was at the direction of my surgeon. As usual, it did not feel good, even though he used a numbing material in my nostrils. And I took a muscle relaxer ahead of time, attempting to keep my neck from such painful spasms afterwards. I did have neck pain, but it was nothing like the last time at the surgeon’s office.  That’s when he removed the splints in the frontal sinuses that he completely re-designed. (I now have one large cavity above my eyebrows, rather than two separate ones with bone in between.)

Energy Improving

I started a few weeks before surgery to increase how much I walked, and I also started a new program that is supposed to improve Mitochondrial energy. Hubby found the program, and we watched the free introductory videos. It appeared to be compatible with everything I had learned on my own about how the mitochondria work. We prayed about it and talked a lot about it. So we decided to take a leap of faith that this program would help me. And we bought the program. I was assured before purchasing that I could get a full refund if I decided my Mitochondrial Myopathy had not shown improvement with the lifestyle changes that were being recommended.

The Energy Blueprint

So I have now been studying and using for the last two months many of the Energy Blueprint* program strategies. It’s all explained by Ari Whitten in great detail in video modules, summary documents, podcasts, and information on a private Facebook group. And I can say without a doubt that I do NOT want my money back! I feel more energetic than I have in years. I am sure a lot of that is due to finally getting rid of the inflammation in my sinuses. But I credit the Energy Blueprint diet and lifestyle changes I have made to improving so fast after surgery. My sinuses are a long way from being healed, but everything is progressing as it should. And that certainly did NOT happen with my first sinus surgery two years ago, when the bone overgrowth first began.

It takes at least two months to watch everything in the Energy Blueprint program and even begin to implement the lifestyle changes. Ari does a good job of offering many strategies, understanding that no one would be able to do all of his suggestions at once. I’ll probably be making lifestyle changes for at least a couple of years to even come close to using every suggestion that is appropriate for me. He always spends time explaining which strategies are more suitable for people with Chronic Fatigue Syndrome and similar fatigue causing diseases. So I feel comfortable going slowly and building up very gradually.

Sunbathing??

For instance, Ari goes into great detail to explain the science of how the sun can increase the energy in the mitochondria. I had never before read that the sun had anything to do with my energy level. So this 74 year old lady started sunbathing at noon, no less, after years of wearing a long sleeve fleece jacket outside, even in the summer. At first I turned over like a rotisserie chicken, staying maybe two minutes total. Because I have cold intolerance, the 100 degree days at noon in the Alabama sun felt good to me.

But I was terrified that I would burn. As I have approached all the changes I’ve made with this program, I increased time to my sunbathing routine extremely gradually. Now I stay on each side for about ten minutes. For the first time I can ever remember – I am beginning to tan – I even have some tan lines! And yes, I can tell I am feeling more energetic, without having to get all my energy supply from food calories. I’m actually losing weight, even though I am eating a huge amount of fresh greens – much of it raw.

If I’ve said anything that peaks your interest in increasing your energy level and improving your health, you can learn more about The Energy Blueprint and about Ari Whitten HERE. There are several free videos you can watch to decide if this is something you would want to try. The course is not cheap, by any means, but I am convinced it was the right decision for me. If you decide to buy the course, I’d appreciate you using my affiliate link* for your purchase. But that’s definitely not necessary, if you don’t feel comfortable doing that.

Thankful!!

I am very thankful that we made the leap of faith to buy The Energy Blueprint program. I am thankful to God for leading us to this course. And I’m thankful to Him for how much I am improving at this point after surgery. I look forward to all the positive changes I will see over the next few years! And I’ll be writing from time to time about some of the Energy Blueprint lifestyle changes I’m making to improve my health and energy.

Frontal Sinus Splints Removed

Day by Day with a Movement Disorder Posted on September 1, 2017 by  

Splints Removed

I saw my Skull Base Surgeon, and he removed the splints up in the Frontal Sinus cavities that he opened up into one large cavity. He is very pleased with the healing progress.

I have refilled the Budesonide plus antibiotic/fungicide nasal rinse capsules and continue with that rinse twice a day. He cleaned out a good bit of blood clots, but it was not pleasant. I think he had to use numbing spray three or four times to get me through it. It was a very strange sensation, as I felt pulling pain way up above my left eyebrow. I pointed to it and asked him if the cavity went up that far, and he said it did. That was surprising.

I could actually see white bone in some areas as he worked, as he uses a camera with his suction tube, and it displays exactly what he’s doing on a big screen. In my understanding of it, the grafted mucous membrane will have to grow over all that white before he dismisses me. Some people would not want to see that, but I’m such a nerd that I like knowing exactly what’s going on. Daughter took me again – no way dear hubby could stay in there watching me hurt and seeing that screen.

Insomnia

I told him about not sleeping through the night. I’ve actually only gone back to sleep after a bathroom visit three times since surgery a month ago. Most nights I’ve been getting maybe four to six hours sleep. and it shows. I’m exhausted. He said I could use the Benadryl until I get this bad habit stopped. I was concerned about drying out my sinuses. But he said as long as I was using the rinse, I would be OK.

So I don’t see him again for 6 weeks. I’ll be seeing my regular ENT in three weeks for more debriding.

Pain and Sleep

The next few days after the rough debriding he did, I had a terrible headache. I finally realized it was emanating from my neck. All the tense muscles I had while he was pulling stuff out of my forehead caused quite a muscle spasm in the area of the fused vertebrae. Once I realized that was the problem, I took a muscle relaxer and used the hot pad – and I slept ALL NIGHT!! The next night was not quite as restful, but still better than it had been. So hopefully I’m headed in the right direction with getting my Circadian Rhythm back in good shape.

Quality of Life

I’m still pretty weak physically, but trying to increase my activity level each day just a little at a time. Going to church was not nearly as tiring this Sunday as last Sunday, so I must be getting a little better. I’m also continuing to sunbathe each day at noon, building up with an additional minute to each side each time I get out in the sun. I don’t look white as a sheet now.

I’m doing the smell protocol faithfully, but haven’t seen improvement there. Hopefully that will begin to show some improvement soon, as it’s awfully easy to get discouraged, doing the same thing and not seeing any difference.

So, with the last of the splints removed, I’m seeing improvement, but slowly. I am hopeful that this surgeon solved my sinus problems. Time will tell, and faith in God’s Healing Hand will get me through all this.

Healing Progress

Day by Day with a Movement Disorder Posted on June 30, 2017 by  

Healing Continues

I saw my ENT yesterday, two weeks after surgery. I’ve not felt good this last week, but he is pleased with my healing progress. I had more noticeable face pain and pressure, but I did quit the pain meds. I’ve been sneezing a lot this week, too. And my throat stays sore from all the post nasal discharge. There’s still some minor bleeding. And I have had a sensation of something being in my right nostril way up high. He numbed my nostrils and used a suction tool to pull out some “crusting”. Crusting is evidently the medical term for scab. Now that the numbing has worn off, I still have a sensation of something in there up high on the right.

Frontal Sinuses Occluded

Even though he is very pleased with the healing progress, he is still very concerned about the totally blocked upper frontal sinuses. He says it’s not unusual to have mucous filled sinuses. But it is unusual for there to be absolutely no air at all in them. And with the drain opening closed up with bone tissue, there’s no way for those sinuses to drain at all.

So I’ve asked him to refer me to a UAB doctor who can do the more involved surgery required to drill through the bone into the frontal sinuses. Hopefully he can find someone who would coordinate surgery with the UAB Oculoplastic surgeon I’ve already scheduled surgery with. I’m hoping each of them can operate while I’m under one round of anesthesia. That way I can have one recuperation to deal with. I’d be more than willing to postpone the tear duct surgery if it means getting both these surgeries done on the table in one session.

I know the inflammation aggravates my Mitochondrial Disease issues. So I’m trying to stay as optimistic as I can that God will work out all this facial mess and allow me to heal properly.

 

 

 

Pain after Allergy Testing

Day by Day with a Movement Disorder Posted on April 19, 2017 by  

Pain after Allergy Testing

You wouldn’t expect to be in pain after having allergy testing, but this last week has been terrible for me. I didn’t have one bit of trouble with my skin from the testing. I didn’t even itch afterwards.

The pain is coming from my neck. It’s as bad as it was before I had the cervical fusion surgery. My muscles are all jangled and spasming all the way down to my waist. Anything that requires lifting my head above eye level even the slightest is extremely painful. And I have a constant burning and throbbing at the back of my head. Turning left or right is not fun, either.

So how did this happen from allergy testing? I had to lie very still on my stomach on a hard and narrow procedure table with no good way to get my head comfortable. She lowered the head section as much as she could, and I had my forehead on it. There was no place for me to rest my arms, so I kind of held onto the sides of the table. By the time the testing was over after maybe 20 minutes like that my neck and shoulders were terribly fatigued and painful.

Pain Meds

I’m off Goody Powders or even plain aspirin in preparation for having more sinus and septum surgery, so I’ve had to use my Methacarbamol to try to relax my muscles. I was in so much pain Sunday after sitting in the pew Sunday morning that I took a Lortab I had left over from my last surgery. Obviously I can’t do that on a regular basis. So I’ve been supporting my neck with the gel U shaped pillow I use in the car and also sleeping on a hot pad.

Yucky

I’ve not been very clear thinking at all thanks to my pain level. And the yucky sinus discharge and blocked tear duct aren’t making me feel any better, either. It seems like everything my body needs to do ends up being harder than it should be. I blame it on my age and the MITO that makes my cells not work as efficiently as they should. It’s very depressing. I thank God that I have Him to help me through all this.

Tear Duct Is Better?

Day by Day with a Movement Disorder Posted on March 26, 2017 by  

Tear Duct

I wouldn’t say it’s completely open, but my tear duct appeared to be better this morning. I went to my eye doctor for the last time with this issue on Friday, I thought. The infection appeared to have finally calmed down. I definitely didn’t have the big painful knot in the corner of my eye then.

But I DO have a small knot there that has puffed up during the day today, so will be calling the eye doctor in the morning to see if I should go back on the antibiotic eye drops.

He used a syringe (no needle of course) of fluorescent liquid in the tear duct openings, top and bottom, and tried to find signs of the bright yellow color in my nostril. No such luck. Then he pushed a whole syringe of saline through. I could feel the pressure, although he had numbed my eye. Still no fluorescent signs in the nostril.

BUT, when I pressed on my eye to wipe off all the liquid around my eye – it squirted out my nostril! He thinks the pressure of pushing the saline opened the duct up at least part way.

Since it’s puffing back up some today, I’m wiping tears more than I was, too, draddit. Hopefully this is swelling from the poking he had to do Friday, and not more infection.

Antibiotics

I’ve now been off oral antibiotics for two weeks and antibiotic eye drops for three days. My digestive system appreciates that, for sure. Of course I’m still taking the probiotics. I am very thankful that all these antibiotics have not caused any tummy issue. I used Zofrin and the probiotics to protect my system. The Zofrin was causing constipation, so I went back on my MiraLax to combat that. So at least my gastric system is happy.

ENT

I’m ready to make an appointment with my new ENT. The eye doc has done all he can for this mess. I’m still having thick mucous discharge down the back of my throat. I’m clearing my throat constantly, just as I was all last year. And that’s keeping my throat irritated and my voice hoarse.

MITO

One thing’s for sure, when you have a mitochondrial disease, you never know how your body is going to react to any situation. I’m just thankful for doctors who understand that I’m not a typical patient!