More Confused..... Ugh!

I recently moved to Ohio and since moving I've thrown out all my 'good' eating habits and have eaten nothing but junk. . . soda, fast food, pizza (tons!), candy, ice cream, etc.  This has been going on for about 45 days and since I've been eating all that.... I've NOT had a flare up. I've been watching and waiting.....nothing.  Don't get me wrong, I am REALLY happy that I haven't had to lay in bed in pain for days straight, but its so depressing knowing that I haven't gotten any closer to figuring this disease out for myself.   It's not much better, but thankfully it did not get worse. 

I have not had one fester. I've had little bitty ones come up and then break open and drain fairly quickly.  Maybe its the water?  I went from city water to well water (with softener).   I just don't know and I'm driving myself crazy trying to figure it out.   
Now, I'm also not saying fast food & junk food is OK to eat because its not. After eating all that crap my face has broken out with little boils/pimples.  So, instead of getting my already permanent boils under my arms more angry, more just decided to pop up on my face instead. I blame it mostly on the pizza.  Pizza is just too convenient while moving/remodeling and such. I'm slowly getting back into a routine and will keep you all up to date on the progress.  We WILL conquer this disease someday.

One last thing..... I've not had so much milk during this time.....that could be it too. :)

NEW HS SITE!!!!

I've put A L O T of hard work into making my ebook and then creating my HS website.  I'm still working on it but I have a ton of information about HS on there and ways to heal.  

Check it out sometime:

www.healinghs.com

Rash still here a little......

I don't know what I got myself into, but my rash is just now starting to go away. It took a week!!  I used moringa oil, olive oil, vitamin E oil and finally calamine lotion.  The lotion seemed to help it the most.  My skin still has not cleared so I'm not sure if my skin will be scarred or what.  I really do think it was the flea/tick dog shampoo that did it.  I will be wearing gloves next time!! :)

Hope everyone is having a great day.

Like I've said many times ....it could always be worse. Always!

I woke up with a rash all over my body.  Literally from head to toe.  Itches like CRAZY!  I'm not sure what caused it.  Maybe something I touched while bathing the dogs?  Something I touched outside? I just don't know and I don't have good enough health insurance to go to the Emergency Room either so I guess I will have to wait and see.  Anyone have any home remedies for rashes??

On a good note......haven't been in pain for awhile with my Hidradenitis Suppurativa. Whatever I'm doing really IS working.  Love it! 

I hate this skin disease..... Hidradenitis Suppurativa ( HS )

I know I have learned how to control the disease, but I still hate having it.  I guess this is the challenge God wants me to overcome with grace & without being angry I have it. It could always be worse.  Always.

I am thankful that I do not have to take narcotic pain medicine to control the pain for this Hidradenitis Suppurativa chronic infection.   :) 

New Cures?? At least some progress for sure.....

I have come across an HS Institute near Cleveland, Ohio.  I suggest everyone with this disease check it out: http://www.hs-institute.com/ !!! 

LOVE seeing this kind of information.  People are working hard to help us with this disease. :) The work they are doing there seems to be heading in the right track! Their surgery seems to work for some folks, but my concern would be: if it ever comes back, will it then come back under the scar tissue? I still have lots of questions but its a start.....there's actually an Institute now looking into this horrible disease.

HOT NEWS:   I've been hearing alot about a product called Emuaid.  I'm tempted to buy it and try it out.  It is rather expensive, but I have nothing to lose.

Hidradenitis Suppurativa - Vitamins for a Healthy Body!

I was confused about Vitamins until I researched what each were all about.  Vitamins are essential for everyday health....especially those of us who are living with a chronic infection / disease. Dr. Weil gives an explanation of what the vitamin/supplements do to help your body. I didn't know that I needed all the vitamins I did because I guess I just never cared. I don't eat terribly healthy so I need the daily vitamins. Hope this helps clear up your vitamin questions....if you happen to have any. :)

Hidradenitis Suppurativa - **MORINGA** Breast Cancer Gone....WHAT????

My mom, of course, has been telling me about something called Moringa. She had a lady visit her Church over the Christmas Holiday and apparently this lady (from Africa) was telling her a story about how she had Breast Cancer and she cured herself! Yep....one of the things she did was consume Moringa daily. So, of course I found the story fascinating and I opted to look into this Moringa food/plant and see what I could find.  

I found this: Moringa Contains.....

• 3 times the Potassium in bananas
• 7 times the Vitamin-C as in oranges
• 25 times the Iron in spinach
• 4 times the Calcium in milk
• 4 times the Vitamin A in carrots
• 46 Antioxidants
• 36 Anti-Inflammatories
• Omegas 3, 6, and 9

I personally buy my Moringa from a person/small business who ONLY grows Moringa for a living. I believe they are the ones who know best and will produce the best *natural* product. I am seeing more and more Moringa products out there and have read some reviews that say their moringa was a light brown color.  True Moringa is dark green and smells like.....well, grass or tree leaves. 

I have been giving my 20 month old 1/8 tsp of Moringa a day.  He has had approximately 5 ear infections since he was born and I was determined to find something that would help him. I am happy to say that he has had a runny nose off & on (stupid allergies!) for about 3 weeks and he has not developed an ear infection since I have been giving him moringa almost everyday. I can't say for sure that the Moringa was the 'cure', but I certainly think so.  It sure doesn't hurt him having it.  My child eats anything put in front of him......including peppers & onions so I know he's getting all the nutrients his body needs. 

Please Moringa, heal my Hidradenitis Suppurativa!! 

Hidradenitis Suppurativa - Laundry Detergent. . .Allergic Rash? Hives? Soap Nuts? Whhhaaaatt?

So, about 3 weeks ago I changed from Gain detergent to Arm & Hammer detergent because I wanted something cheaper and without all the chemical 'smelly' stuff in it. I washed EVERYTHING I own in the A&H and then all of a sudden I started to get a rash on my knee.  I scratched it, of course lol, and over a period of about a week, it was spread to both lower parts of my legs.  I should have went to the hospital, but we only have one car with 2 children so its hard to make a 6 hour pit stop at the hospital for a little ole rash.  Can't go to my doctor either, but that's an entirely different issue that I'm trying to get fixed quickly.

Annnyyywwaaaayyyysssss.... My wonderful mother told me last week about how she's using these soap nuts as her laundry detergent now.  I said, " Ha Ha Ha...WHAT?  Soap Nuts?"  That was funny to hear. :)  She laughed too and started telling me about these nuts that she puts into a small bag and into the wash with her clothes and they come out CLEAN - Naturally clean!! I was definitely interested since while I was on the phone with her I was using my back scratcher to scratch the crap outta my leg rash.  I looked online and found a smaller package that would probably last about 2 months for our 20 loads a month household.  I ordered them and it cost me about $14.00 (with shipping & tax).  From that point, I started letting the laundry pile up so I could wash everything when the nuts arrived.  A couple days later they came and I was actually excited to do the laundry!! lol

I read the directions, loaded 5 soap nuts into the little laundry bag, added the clothes and away the wash went.  Those little boogers actually washed my clothes and I didn't even need softener. Not one item had static cling. Clothes smelled like, nothing, except CLEAN!  I was so exited.  I washed ALL 5 loads one after the other and never added anything other than the soap nuts (used the same ones for all 5 loads). I even had some stained items, but I just used Shout on those first for about 5 mins.....stains were gone. I am SOOOOOOO happy to have found these soap nuts! Thanks so much MOM :)

Its hard living with HS because I'm basically stuck at home now everyday & all day. Whenever I sweat or wear a T-shirt for too long, it makes the boils worse and hurt bad enough that I can't even move my arms. Having a 19-month old, there isn't an option to NOT MOVE.  He keeps me busy and thankfully I have a FANTASTIC husband who helps as much as he can.

That's it for today. I felt I needed to update since I hadn't been on for awhile.

WEEK 1- Gluten Free to Heal Hidradenitis Suppurativa

I can't believe its been a whole week!  I feel really good today, but 2 days out of this week I felt really week and had headaches.  I'm hoping that its just gluten withdrawals and nothing serious.  I also started my menstrual cycle so that may have something to do with it also.  I'm not a medical doctor so I don't know.  I have a bit more energy....especially today.  I was dancing around the house all day....cooking gluten free pumpkin rolls and Chicken/potatoes/veggies for supper.  Yummmy!! 

For the ladies.....I had a baby 17 months ago and every month after giving birth my cycle has been extremely painful. It was never like that before the pregnancy.  This time is not painful at all so I'm going to chalk that up to being gluten free!! :) I hope it stays this way because the pain felt a whole lot like labor pains and I wasn't liking that at all (obviously!)

My arms seem to be a bit better.   I think I may just be on the road to recovery   That would be so great!! :) 

Rice Almond Bread

I bought some EXPENSIVE ($4.49) Rice Almond Bread at Kroger the other day so I wanted to try it.  I used to eat bread all the time....normally just the cheap white kind.  I toasted a piece of this bread since I had heard that it makes it taste better.  All I can say is Y U C K!  I took a bite, chewed it about 6 times and then spit it out into the trash can!!  I even had put blackberry jam on it to make it taste better. I really wanted to give it a fair shot but it was totally gross.  I've accepted that I'm going to probably have to just live without bread until I can buy a bread maker and make my own. I'm not about to waste my money on any store bought anymore.  I did however remember how much I LOVE pumpkin bread, so when my gluten free flour comes in from Amazon on Friday then I'm going to make some pumpkin bread and chow down!!! :)

I feel WORSE & with more Headaches - Ugh!

I have had a foggy headache all morning.  Took some ibuprofen about an hour ago and that's not helping. I have been on the computer all morning paying bills and reading stuff so maybe I need to lay down. I'm about to put some pork in the crock pot for supper.  I'm thankful I can still eat deer, pork, chicken and beef. :) 

I have been feeling weak, foggy, stiff, depressed and have more headaches since I cut out gluten. I have had mini panic attacks and felt as though I may have a heart attack/stroke or just feeling like there is something bad going to happen to me.  When those times hit, I try to turn on the TV and watch something funny to get me laughing and not thinking about it anymore.  That works, but I hope I'm not just masking something I should really be paying attention to.  I think I'm going to call my dotor today and get some tests run just to be on the safe side.

I'm starting to wonder if I should have cut out sugar instead of gluten??? I was wondering if when going off of gluten someone could feell worse before feeling better and I found a few sites.  If you'd like to read some, they are:

1. http://nutritionaltherapy.com/the-storm-before-the-calm-why-some-people-get-temporarily-worse-on-a-gluten-free-or-casein-free-diet/
2. http://www.allergy-details.com/gluten-free-diet/gluten-free-diet-and-symptoms-get-worse/
3. http://www.probioticsmart.com/blog/three-stages-to-starting-a-gluten-free-diet-successfully/

 I know that gluten can't be 'good' for our bodies, but I'm not sure cutting out gluten completely and drastically was the answer.  I'm not turning back now, I'm just saying. lol  I know when I quit smoking 7 months ago I felt the same way.....I felt worse before I felt better.  I almost gave in several times.  Even occasionally these days I crave a cigarette in hopes it would help me 'feel better' but my brain takes over with that all so clever common sense! :)

Gluten Free Chocolate Cupcakes - Y U M !! :)

I made my yummy chocolate cupcakes today. I'd been craving them for a few days but wanted to get the G-free flour first before I made them.  I must say, even with the G-free flour, they are YUMMY!

I bought the Gluten Free Multi-purpose flour at Kroger. EXPENSIVE at $6.99 for 24oz, but it was the only G-free flour I could find there.  I couldn't find ANY at Walmart. :(  I did find some at Amazon but I haven't gotten it in yet so I can't say if I like it or not.  I will be sure to put my opinion in after I use it.

When viewing this on my end, the picture is sideways. I've tried to fix it and I can't figure it out, so I apologize. I wanted you to see what the product looks like and also the Kroger Gluten Free Tags they put under the products.....that's just awesome!!!

Here is the recipe for the cupcakes if you are interested:

What you'll need:

• 3 eggs
• 3/4 cup butter (softened)
• 2 cups Gluten free flour
• 3/4 cups unsweetened cocoa powder
• 1 tbls vanilla (exract or generic)
• 2 cups of white sugar
• 1 1/2 cups milk
• 1 tsp baking soda
• 3/4 tsp baking powder
• 1/2 tsp salt

**Soften the butter @ room temp & also pull the eggs at the same time to also warm to room temp ( approx. 20 mins)

Grease cupcake pans or use liners and preheat oven to 350 degrees.

Stir together the flour, cocoa, baking powder, baking soda & salt.  Set aside. In another bowl, beat the butter with a mixer on medium speed for 30 seconds. Add the eggs and then gradually add the sugar.  Beat in the vanilla, adding the milk & flour mixture on low speed.  Beat on a higher speed then for 1 minute.  Pour batter into cupcake pan unti 3/4 full (no more).  Bake for 18-22 minutes or until toothpick comes out clean.  Cool for 15 minutes & remove.  Frost immediately. 

Hidradenitis Suppurativa - Day 2 of Gluten Free Diet

I am doing pretty good.  I haven't noticed any change in my energy, but I have noticed I am a bit more light headed. I don't know the reasoning for this, but it makes me feel really strange sometimes. It only happened a couple times.


I had an oops tonight though.....while I was laying in bed I got a little hungry for a snack so I grabbed 3 pretzel rods.  Mmmm yummy.  WRONG.....1/2 way thru the 3rd rod I looked at the bag and seen WHEAT. lol  I didn't come down to hard on myself....just made sure to remember to look at the ingredients more often. Hopefully I will be better. :)

First day Gluten Free to cure my Hidradenitis Suppurativa :-)

Today is the day!  Gluten Free starting today and hopefully get rid of this awful HS disease.  I hope to see improvement in as little as a week, but we will see. 

Hidradenitis Suppurativa - I'm excited!!!

Tomorrow is the big day.....changing my diet to be Gluten Free!! I've done a little research on what I should be looking for on the labels of the food and such, but I haven't come across a website that explains everything to me.  I am going to try and get all the information you can use on my blog so I can help all of you out there who may be dealing with all of the same stuff that I am. I will hopefully be able to make food lists and menus and more.

I don't feel I have Celiac Disease.....my main goal is to help with my HS. If it makes me all around feel better then I will be extremely pleased. :)

Wish me luck......hope I can pull this big change off. (I have faith!)

Hidradenitis Suppurativa - What I normally eat

My mom came for a visit and we've been watching Dr. Oz, of course, and talking about my symptoms.  She has a friend who's husband has celiac disease and he has a lot of the symptoms I do, except the HS.

All I would eat pretty much weekly is:

Pizza  (combo w/Cinnamon sticks)  Frozen & boxed to make myself
Life Cereal (breakfast & snack before bed)
Spagetti or Rigatoni
Macaroni & Cheese w/Broccoli & Cauliflower
Canned or Boxed Soup
Cinnamon & Sugar topped White Toast (2 pcs)
Lego Waffles
Chicken/Deer/Pork/Steak/Ham (but those are all good things :) Thank Goodness!!)
Lots of white potatoes - mashed, fried, twice baked....pretty much any way is good for me.
Canned veggies
Corn Meal (mush...mmmm yummy) 
Mt. Dew - can - at least 3 a day and up to 5.
Decaffinated Iced Tea  (made with 2 cups sugar in 2 qt)
Crystal Light Lemonade
Any kind of Root Beer
Pepsi, Dr. Pepper, etc.....had a lot of soda in the house to drink at anytime.

So, pretty much everything I am eating is probably bad for me.  I have decided that I have nothing to lose and will go on a gluten-free diet starting October 5, 2012. 

I used to just look at labels and read the Sodium amounts.  I was really shocked when I seen the Digiorno pepperoni pizza I was eating was 870mg per serving (serving size 1/5 pizza).  I would eat at least 1/3 I'm sure (3-4 pcs), so that's a TON of sodium.  That's not even the gluten I was ingesting....so needless to say....no more pizza for me.

Right Arm after Hot Hands Heat - Comes to head

Right Arm Boils / Cysts

I felt the boil festering so I grabbed a Hot Hands and laid in bed with the heat for a couple hours. This is considered a little one. Still hurts like heck for being a little one!!

Left Arm Boils & Fluid Pocket

Left Arm with Hidradenitis Suppurativa (HS) Boils

As you can see on this picture....there is a 'pocket' of fluid that is under my skin.  That is from when I had surgery on a boil that first appeared in April 2008.  The procedure was not done correctly and it now is just filled with fluid at all times and that fluid drains out of many other boils connected to it.

Hidradenitis Suppurativa - Open Wound - Very Painful!!!!!

This is my right arm.  It is after I had put heat on a very bad boil and it drained.  I was left with an open wound. :(

Hidradenitis Suppurativa - June

6-15-12 Right Arm

This was after I used a hot hand warmer for about 45 minutes.  Those hand warmers work pretty good & fast for bringing the boils to a head.

Hidradenitis Suppurativa - April 2012 pictures of Armpit

4-8-12 Left Arm

The following week......

4-16-12  Left Arm

The following week......

4-22-12  Left Arm

My left arm doesn't seem to be getting any better.  The inflammation is consistent. I am so depressed.  I can't wear anything over the areas or it is unbearably painful.  Is there no cure for this yet????????? 

Worse...then Better...then Worse again. :(

Left Arm

Left Arm Boils - swollen and H U R T S! ! !

This is the most painful part of the process....when it is swelling. If anything hits or brushes against the area its like someone hit me with a baseball bat. 

This is in my left armpit. I have multiple boils / cysts and one has a tunnel tract from a surgery I had on it when I first got the skin disease. 

The pictures don't do the 'pain' justice. 

Hidradenitis Suppurativa - Update on Left Arm

Hidradenitis Suppurativa After Christmas Disaster

During Christmas this year, I (being a total idiot) decided that I would wear a sweater while visiting family all day. Boy was that a H U G E mistake!  I wanted to look nice, especially for pictures.  I hadn't seen my extended family in quite a few years so I didn't want to show up in a T-shirt. As you will be able to see from the picture below, big mistake, because I was in total pain for the next 2 days.

Agony is more the word.

This picture was taken with a cell phone, but I'm sure you can see how swollen it is.

This picture was taken on the drive home the following night in the car, in the freezing weather!! I had to wear a tank top...brrrrrr!!  I was thankful it busted because I knew that would be some relief.

Hidradenitis Suppurativa Funky looking boil....but still hurts!

Left Arm

Left Arm

I have a layer of Vaseline on....that is the only thing I've found to help a little.

Forming Boils.....O U C H!! Hidradenitis Suppurativa

Left Arm

I couldn't even begin to describe how painful this was.