Page 113 of 115

Ehlers Danlos Syndrome and Snow Storms

I’m on day 3 of terrible headaches and joint pain that’s worse than usual.  My Ehlers Danlos FB group is filled with members reporting the same thing.  They all agree that the incoming winter storm is bringing us headaches and extra joint pain.  It’s another symptom of Ehlers Danlos.  This has me thinking of moving to Florida!

snowstorms

Living on the East Coast and preparing for a “historical” snow storm, means going to the store and standing in line with all the other southerners who think they must buy about 3 weeks worth of food.  So, we couldn’t even get our normal weekly shopping list filled….ugh.  There wasn’t even one can of chicken broth in the entire store!

Unfortunately, I’ve been unable to help around the house this week.  I’ve been so tired and have taken many naps.  Hubby drove me to the allergist.  Seeing a different doctor this time was a little nerve-wracking, but he was wonderful.  He agreed with all of my diagnosis’s, including the Mast-Cell disorder.  He felt that my auto-immune disorder was probably a lupus disorder, but not conclusive.  He doubled my Mast-Cell medications and changed my “as-needed” medicines into “needed”.  So, I’m taking many more pills.  My pill box is much bigger and my stomach is soooo sensitive to all these pills.  The first night I took them, I woke up kinda vomiting a little.  But, then I was ok.

tired

I’m trying to spread out the pills and take them with plenty of food.  This plan is why I keep gaining weight, though.  The side effects aren’t so great either, including what I read about the long-term side-effects.  I always said I didn’t ever want to get like this……living on pills.  But, what is a person to do.  You’re hurt if you do and hurt if you don’t.

Taking medication is not for a cure, but just to improve my quality of life.  There is no cure for Ehlers Danlos.  We are only able to treat symptoms, such as pain.  So far, I don’t feel like I’ve gotten to a point of real help.  When I get to a point of feeling better, then some other disease attacks.  That’s the problem: we usually don’t just have EDS.  Having an auto-immune disorder, Mast-Cell disorder, POTs, chronic migraines, and more, means that something is always flaring or bothering me.

That’s why I say I’m chronically ill.  I want to be all better.  I try to psych myself up to do what the inside of me wants to do each day.  I just can’t “Will” myself to do that.  So, I’ll continue to get up and do things when I can.  I’ll rejoice when I can cook, clean, change the sheets, or whatever!  I love being able to do a normal activity 🙂  Try to be grateful for the days you can live normally.  You never know when that may be over.  God is good to give us our days, and I’m so thankful to be alive!!!

@2016, copyright Lisa Ehrman

How Chronic Illness Affects Your Budget

Last night and again today, we’re working on our budget.  Since my hysterectomy surgery in January, and all my new drug trials, we’ve ignored it.  It’s not a pretty picture.  Because Hubby is retired and I’m not able to work, we need to live on a strict budget.  We’re seeing that this hasn’t gone too well, because of my medical bills.  Over half of our budget was spent on medical expenses!

Budgets

We’re working to readjust the budget to cut categories that we can, and take more from the retirement account.  Medical expenses are extremely high for chronically ill people like me.  Paying insurance premiums is only the beginning.  We also have separate dental policies.  Having Ehlers Danlos Syndrome, my teeth are very fragile.  Despite taking good care of them, they are in bad shape.  I have numerous conditions, and see specialists much too often.

When I saw the eye doctor recently, he said I needed an appointment to be checked for Diabetes.  I’m constantly being referred for other tests, such as MRIs and such.  This past twelve months I’ve seen: Geneticist, neurologist, eye specialist, dermatologist, dentist, general doctor, rheumatologist, physical therapist, hand therapist, GYN for surgery, and the pain management specialist.

Ehlers Danlos Syndrome, for me, is an invisible illness.  People always tell me that I look fine, and must be feeling better.  I’m sure they don’t think that my illness is a huge burden, financially either.  They probably don’t realize how many doctors that I have to see, or how many drugs I take or have to try.  It’s not something that I want to talk about to everyone, because it makes their eyes glaze over.

Budget Resources

When you have this many appointments and the tests that accompany them, your bills get big.  You begin to worry about the future…if it takes half your money now what is going to happen to you down the road???

Well, I don’t have the answers.  God has provided our retirement that Hubby has worked hard to save.  God has taken care of us so far, and He will in the future.  We pray a lot.  And, we’ll have to work very hard to get this budget in shape.

I Peter 5:7 Casting all your anxieties on Him, because He cares for you.

@2015, copyright Lisa Ehrman

Ehlers Danlos Syndrome Fingers

Now that my fingers are dislocating in the joints, the Ring Splints are really helping to prevent pain.  Now that I have a thumb brace and a right pinky splint, its a little bit noticeable when I wear them both.  Yesterday, I had another appointment getting measured for two more ring splints.  My right index finger has been dislocating a lot the last month.  I want to get it braced before the knuckle gets huge.  My pinky got so big before it was braced.

finger

My left middle finger was also measured for a middle knuckle splint.  Im sure these two ring splints are going to be unnoticeable (sarcasm).  The Hand Therapist noticed that my left pinky looked deformed and needed bracing.  Even though I don’t feel it dislocating, its just very loose.  You can push on it (like a rubber finger) and it gives easily.  I already ordered a plastic ring splint that fits.  She also showed me how to sleep in the right hand ring splint, too.  She said that would keep it from getting more and more deformed.

splint

All of this is disheartening, as I see the future of my hands being covered in ring splints.  I’m glad that they’re available, but they’re expensive.  They’re also hard to fit, and I can tell that I’m going to have trouble with swelling.  Insurance doesn’t cover these lovely little splints.  I guess I’ll have shiny fingers.  I wish they made these for my toes!

@2015, copyright Lisa Ehrman

    SimpleHealth Magnesium Citrate Review

    SimpleHealth Magnesium Citrate Review
    Disclosure: I received one or more of the products mentioned above for free using Tomoson.com. Regardless, I only recommend products or services I use personally and believe will be good for my readers.
    SimpleHealth
    When I am ready to purchase a new dietary supplement, I first remind myself that Im not a medical expert.  Therefore, I do a little research.  What do I want to look for in a dietary supplement?  I want to know that my supplement is pure; free of those things that I dont want in my body.
    SimpleHealth Magnesium Citrate is: Vegetarian, Gluten-free, Dairy-free, sugar-free, Soy-free, Yeast-free.  It also has no fillers or flavors.  These things are very important to me.  When I mixed the powder with water, it was delicious.  It had a very slight citrus flavor. You can add this to any juice or water.
    Magnesium is an important mineral.  This product makes it very easy to incorporate magnesium into your daily diet.  Because it dissolves instantly into water or juice, you can drink it daily.
    If you want to add Magnesium into your daily regimen, you will want to try SimpleHealth Magnesium Citrate!

    Zim’s Advanced Organic Crack Creme Review

    Zim’s Advanced Organic Crack Creme with Hydrocortisone
    Disclaimer: This is a sponsored review.  Products were given to me to review, but no other compensation was provided.  All opinions are 100% my own.
    Image SEO Zim's Review IMG_1485
    Problem skin?  I have it; do you?  When I was asked about reviewing Zims Advanced Organic Crack Creme with Hydrocortisone, I jumped at the chance.  I’ve always had very sensitive skin.  It’s one of the first things the doctor noticed at my birth.  I also have a collagen disorder.  I try skin care products all the time, looking for the perfect cream or lotion that will help with my many skin aliments.
    My concerns now are cracking skin on my heels and eczema.  I have eczema patches on my wrist, elbows, and back.  I’ve tried the Zims Advanced OrganicCrack Creme with Hydrocortisone on all of these places.  It is definitely helping with the itching and flaking of eczema.  I will keep using it because the redness is also decreasing.  My feet are improving a little after two weeks.   The Zims works very fast on insect bites.  The itching and redness went away with just one treatment.  I really like the aloe vera ingredient in the creme and the non-greasy feeling.
    Zim’s Max Freeze
    Image SEO IMG_1507Zimms Max-Freeze Spray
    I also tried the Zims Max-Freeze Spray.  It goes on light and easy.  After a minute you can feel it working to ease muscle pain.  It did help with pain.  I have a lot of back pain, because of scoliosis and will continue to use it.  I would compare it to Biofreeze, but like it much better.  Biofreeze is a gel that leaves a greasy and sticky residue.  The Zims Max-Freeze Spray left no residue on my skin.  After it dried ( which was quick) there was nothing to stick to my clothing.  I liked the pain relief very much!
    To find out more about Zims and all these wonderful products, please visit Zims
    @2014, copyright Lisa Ehrman