Health


…..Deep breath……Yea, its been since July since Ive blogged – buuuuuuut

One of my New Years Resolutions was to resurrect this blog with at least one new post a week. For starters, I do have alot to say, but since I am left without a physical voice at least half the year, this is where Im forced to ‘say’ it.

So, here are my scattered thoughts on wrapping up 2014 and looking forward to 2015.

ACCOMPLISHMENTS?

Anyway, as of today (January 4, 2015) I am 669 days smoke free because I switched to ecigs. My health has somewhat improved….I havent had to use the rescue inhaler for quite some time.

Obviously vaping isnt going to improve actual chronic conditions….and the act of quitting combustable tobacco takes time to actually show improvement – and there is reducing your mg of nicotine (Ive gone from 24 mg to 0-3 mg).

Ive increased how much water I drink and only drink a cup of hot green tea a day (I used to be able to down a pot of coffee plus drink sodas all day).

I also spent my Christmas week completely news free. Granted that wasnt exactly a New Years resolution but it was something I needed to do for my own sanity. I believe that may turn into a tradition -depending on the severity of what is going on in the world, of course.

I cleaned up alot of my social media feeds. This covers removing people I dont speak to, inactive accounts, and just otherwise negative folks. I have also kept my exposure to these social networks to a minimum, which actually has made my life alot more peaceful.

REALIZATIONS

2015 was also the year I found out who my real friends are and just how fake others have been.

See-when you have a chronic illness, and your health deteriorates, and you cant travel or even get out of your house – you dont expect your friends to ‘trade’ you in for another person who can do those things. Real friends just dont abandon you like that…..they just dont leave you hang. And they certainly dont just stop talking to you. So goodbye to those people.

CHANGE?

At the end of last year, I asked people to send me suggestions of things that I might have missed…..(music videos, youtube channels, podcasts, Netflix shows/movies) So, everyday in 2015, I will be stepping outside my ‘comfort zone’ to watch things I would have otherwise missed. I also suggest you do the same. Its already been eye opening as to what I have missed simply because it wasnt in my radar.

This is also going to be a year of personal change. Because of my illness, Ive been very inactive this year. I wont go into the details in this post as to what has been going on, but its been difficult to go more than 10 minutes from my home without huge issues. I will be setting a weekly goal to ‘move my body’ so I get in some resemblence of normalcy back in my life.

A continuing goal of mine is to reduce the clutter. This includes clothing you wont ever wear again, papers you wont need, and other belongings that you just dont love/need/want. I personally donate what I can, recycling what I can and tossing the rest.

LETS WRAP THIS UP NOW, SHALL WE?

I have other goals for this year, but those will be mentioned in other posts where they will make a little more sense. But thanks for reading and I hope you stick around for 2015!

I know…..I know….My blog has been silent over a year and I apologize.

 

Anywhooo, I submitted my comments to the FDA today and since so many of you guys wanted to know what I said I figured Id put it here.

So here is what I submitted: (My tracking # is:  1jy-8dh8-3×75)

 

 

“FDA, Docket No. FDA-2014-N-0189, Regulatory Information Number (RIN) 0910- AG38”
Submitted July 28, 2014
Dear FDA Center for Tobacco Products,

My name is Sheila Faulstich and I smoked two packs of cigarettes for over 30 years. I no longer smoke thanks to electronic cigarettes. Since I began vaping a little over 500 days ago, I have also been able to reduce my nicotine level from 24 mg to 3 mg and even sometimes vape 0 mg.
As with others like me, FDA approved methods to quit smoking did not work for me for various reasons. My doctor attempted to help me quit smoking many times due to my health deteriorating. Some FDA approved methods were not compatable because of their side effects and I even attempted hypnosis. Even during my longest stretch without smoking, I still wanted to smoke and eventually went right back to smoking 2 packs a day.
Right before I discovered electronic cigarettes, I was diagnosed with COPD and needed to use a rescue inhaler several times a day. I also suffered from a myriad of other health issues. Ever since I started using the electronic cigarette, I have not needed to use my rescue inhaler and my other health related issues and begun to improve.
*****
While we, the consumers, have no way of knowing the impact of the proposed FDA regulations, there is ‘talk’ in our community that only cig-a-likes would be available. This is a big problem for me. For one, these products are being manufactured by ‘big tobacco’. The same manufacturers who have poisoned me for 30 years. Its also worth noting that these cig-a-likes cannot be refilled with the nicotine level than I currently use, which is significantly lower than what is available with these products.
I am fearful that if these regulations are put into place in the way they are perceived to be, that there will be an underground movement for these products. This increases the risk of the consumer since many of the vendors we work with now, may be put out of business due to the burden of the regulatory process. Many of us, the consumer, personally know our vendors. So many of the vendors we use are living the American Dream of owning a business for the first time in their lives, and employing people. In this economy, I dont think putting people back out of work is any answer.
Many legislators, as well as what is contained in the proposed FDA regulations, are skirting around the issue of flavored e-juice. Quite honestly, I dont vape tobacco or menthol flavored e-juice. I personally do not like them. If I were to list all the flavors I vape, I would exceed the word limitations for commenting. Adults like flavors. Its just that simple. If you ban flavored e-juice, then where is the logic in allowing flavored alcohol or flavored nicotine gum, which is currently approved by the FDA.
Should the proposed regulations go into effect as they are currently written, many would have no choice to go back to smoking. While I am not personally one of them, it is worth considering that many thousands of current non-smokers would be reduced to smoking after (in many cases) a substantial absence from cigarettes.
Not all the proposed regulations are arguable though. I believe that most of us in the vaping community would gladly adhere to putting restrictions of these products out of the hands of minors. However, every vendor and electronic cigarette store Ive used, does not sell to minors already, so Im unsure of the necessity to over-regulate what is already being followed as an ‘industry standard’.
In closing, I am perplexed as to why the FDA would need to step into this growing industry that has had no problems in the 5 years it has florished.

As I stated in my last post, we are now electronic cigarette vaper-ers….

1300mah-ego-t-stainless-steel-vision-clearomizer-ce4-add2

When I first began to vape, I thought I would not like flavored nicotine. I started vaping Tsumani brand tobacco at 24 mg. I should also add that it is 100% pg. This was extremely harsh on my throat. The first day on pure tobacco e-liquid was not pleasant. I got a harsh throat hit and coughed ALOT.

I thought I made a huge mistake.

After reading many forum posts, I thought we should give some flavors a try. My boyfriend wanted to try a blueberry flavor and our sales lady at Safe Smoke told that Pink Spot Vapors had pretty great juice. While Frank really liked this flavor straight, I still thought it was too harsh on my throat but decided to mix it with the tobacco juice…..I had a winner. Not only does it taste good, it makes the room smell fantastic.

I did purchase the Safe Smoke brand coffee at 18 mg that I have vaped straight. This stuff tastes just like a cup of black coffee! I love to vape this after dinner. It doesnt produce too strong of a throat hit, but it does produce a good amount of vapor.

I mentioned in my last post about Fuzion Vapor and the crankberry. I LOVE this juice. LOVE. Seriously. Its described as cranberry/rasberry flavored, but I think its more of a soft watermelon. Even at 24 mg of nicotine, its smooth and produces a ton of vapor. I also mixed this with my tobacco. This strengthened the throat hit and really enhanced the actual crankberry flavor. I also mixed this with Franks US Menthol 24 mg (just a few drops) and created a wonderful minty watermelon taste.

We have been vaping these mixes for about two weeks.

Last night we decided to purchase some additional Fuzion Vapor juices based on reviews I read online. Unfortunately taste testing at Safe Smoke is not doable using clearomizers, but one of the customers let us use his set up that uses similar cartridges as the testers. Whew!

After tasting some of the flavors we settled on 2 additional flavors. One of the flavors I initially wanted to buy was not as good as I thought it would be (the banana one).

Fuzion Vapor Ectoplasm – Oh my! This is like a citrus fruit lemonade. It has one taste on the inhale and another on the exhale and then the vapor smell….Its a good thing we cant drink this. It seemed a little thick in my clearomizer, and Ive let it steep a bit since last night and it seems it has gotten better consistency-wise. I cant tell a difference in taste yet. Some reviewers have said this is hard on equipment, so Im watching carefully. I might rinse the clearomizer out every couple refills though. I got this in 24 mg strength and there is no throat hit. The after taste is good but unless you are chain vaping, it can leave a little chemically taste. Im not sure if it needs to steep longer to get rid of that tho.

Fuzion Vapor Starscream – Words just cant even describe how good this juice is. Ive read other reviewers saying this is like a Cherry Starburst candy, but its so much better than that. I steeped it last night and most of today and it has gotten so much better. I admit I mixed some tobacco (just a few drops tho) and it has enhanced it greatly. The vapor smells so good. The after taste is like youve actually ate a fruity candy. Nothing chemical. I got this in 24 mg also, but I think when I get it again, I work down to the 18 mg because I like to vape it too much!

Both Frank and I wanted to try a stronger watermelon. We decided on Pink Spot juicy watermelon at 24 mg. Both of us chain vaped this on the way home from the store. It tastes fabulous and the smell is too good. It left a great taste in our mouths. I did end up mixing mine with the Fuzion Vapor Starscream and Jeez. Wow. It was like vaping cotton candy. I almost could not stop vaping this last night!

I definitely LOVE the new juices we have. Earlier today I had been out of the room we had vaped in, and when I walked back in, it smelled SOO good. I can only imagine how good the vehicles will smell! Changing over from cigarettes to these electronic cigarettes has definitely been a great thing.

So many of my friends have been asking about electronic cigarettes, that I decided it was easier to post this blog, rather than typing this out each time I responded……

Right around the middle of February, Frank came home raving about electronic cigarettes. He brought home this ‘kit’ and some e-liquid. He smoked menthol cigarettes so I really wasnt in the mood to try it. (I occasionally smoked menthol, but Im a non-menthol smoker) But after a few days, he stopped smoking and was exclusively smoking the electronic cigarette, so I thought, hmm if hes successful, I should really try em. (We have both quit numerous times, but have always gone back to smoking)

So he took me up to a place in the local mall called Safe Smoke (Westminster MD). The sales lady asked me how much I smoked and let me try a few different ‘strengths’ of tobacco.

After choking myself, we settled on 24 mg e-liquid. I mention choking myself because you cant inhale these things the same way you smoke a regular cigarette.

I was using one of the batteries from Franks kit, so I wouldnt have to plunk down $75 for my own kit, not knowing if I would care for this electronic variety. But after two weeks, I HAD to get my own.

Its been almost a month now since Ive went the exclusively electronic route and we have done a little experimenting…..

We are using the ego-t battery with vision clearomizers.

This is what it looks like assembled: l_900mah-ego-t-battery-ce4-atomizer-e-cigarette-kit-59dd

Frank has a green battery and a black battery, while I have a brown battery and a white battery.

We both have four vision clearomizers. (They come in different colors and several different sizes fit on the ego-t battery) We both like variations in flavors so four clearomizers work for us. Clearomizers also seem easier to work with when filling and refilling. They are also pretty simple to clean (we sort of messed up cleaning one, so despite what you see online, do not remove the wick when cleaning).

How to Clean a Clearomizer

The best part about ‘vaping’ is the flavors!!!!

No matter if you smoked menthol OR regular tobacco, you will not have the same taste with an electronic cigarette. Thats probably a good thing.

But…..

We found some really great flavors. They taste great on the inhale and exhale and produce great vapor.

Frank really likes the Pink Spot Blue on the Berry. Its a fabulous blueberry and the vapor smells fantastic! It produces an excellent throat hit.

Im privvy to the Fuzion Vapors Crankberry. Its a rasberry/cranberry mix. Its very smooth, but it doesnt produce a great throat hit, but the flavor way outweighs that. (Buy Crankberry here) Ive heard that the guy who makes these e-liquids was a chef, so most of his flavors have great reviews.

Both of us mix these flavors with our tobacco. I like a few different variations. The sales person at Safe Smoke turned us onto mixing our e-liquid.

But I have to say….the best part about vaping is there is no cigarette smell! Depending on what is in your clearomizer, you can have a fruity smell or no smell at all. You and your home will no longer reek of cigarette. Your breath will not smell like you ate an ashtray. AND, you will be able to actually taste your food!

And, there are several forums online where to get e-liquid reviews, support if you want to wean to ZERO nicotine, and also some pretty neat do-it-yourself mods.

I have to say, my biggest issue with smoking was the hand to mouth action, so I carry my ego-t EVERYWHERE! Frank has the nicotine to overcome. Both are big obstacles when quitting this habit. But electronic cigarettes do fulfill both of these issues and so far, so good. We havent smoked a regular cigarette in over a month!

I apologize in advance if this post is long. I have covered many areas of contention, so please read to the end.

During the election season Ive seen many of my friends make posts that make them seem like, for lack of a better word, jackholes.

You see, I have liberal friends, and I have conservative friends. At times, both sides make generalizations and assumptions that flabbergast me. Sometimes these posts make my brain want to explode.

But right now…..its pretty much the conservative side that has done the generalizations and assumptions.

Depending on your ‘lean’ you might be one of the friends Im going to talk about.  I wont be calling you out by name though, since there are so many of you stating the same generalizations and assumptions.

Most, if not all, center around the entitlements argument.

*Welfare – First some history

Welfare programs similar to AFDC and food stamps existed since the early days in the United States (http://www.welfareinfo.org/history/) In reading the history in the link I provided, programs have pretty-much always existed to help those in need. In the 1930s Roosevelt enacted the Social Security Act and then it was amended to include the AFDC program that still exists today.

We can go further back to even state that programs to help the needy even existed in ‘biblical’ times. It is seen in Judaism and Islamic cultures as well as Christian cultures. (The New Testament even goes so far as to state that Jesus said to feel the hungry and take care of the sick)

Which brings me to the argument about President Obama and the ACA

* Heathcare

First of all, if you are religious, you SHOULD be wanting to take care of the sick, and conservatives…..just as an FYI, republicans were FOR an individualized health care mandate.

See video with Newt Gingrich and Hilary Clinton back in 2005

There is also a discussion regarding health care that makes me LIVID.

Yes, LIVID.

There is a belief that people who support the ACA are lazy and claiming they are entitled. Ill explain.

Those of us with multiple health issues or pre-existing conditions are not supposed to be turned down due to our health histories. While this is a partly true statement, insurance companies charge us out the wazoo for coverage that doesnt include the illnesses we will be treated for the most.

For instance: I have lupus and yet, health insurance would not pay for medications to treat the arthritis, steroids, anti-malarials etc that would be needed to treat that condition.

So, what would I get for my money? Apparently nothing……

Ive been told to apply for medicare. You need to be on disability to be approved for that program. In my case, to be approved for disability would mean that I can no longer work. (Funny how people suggest this considering their argument)

This is where the ACA benefits me directly. No longer will I have to pay the extraordinary cost to begin with because of my health issues, but that coverage would pay for the medications and treatments I would need.

And you know what? I could STILL work FULL TIME and receive these health benefits.

ADMISSION – Ive been on Medicaid because the cheapest insurance I could get was well over $2000 a month and wouldnt cover ANY of the medications I needed to take on a regular basis. Some of you have called me a mooch who is claiming ENTITLEMENT! ENTITLEMENT! because yes, I HAVE worked since I was 16 and I SHOULD be able to afford to keep myself alive.

* Abuses

I will not act like there arent people on social programs who arent abusing the system, because we all know thats not the facts. But we dont know those people or how they got into the situation that led them into the social service office.

We all hear those stories about the lady in the grocery store with 4 kids and food stamps getting into a nice car…..but whos to say she wasnt just recently dumped by her significant other and left penny-less? Whos to say that her husband wasnt recently killed? We dont know how long shes been using food stamps and we dont know how long shes had that nice car. Stop judging people you dont know!

* The luxury of having internet service

For the last two days, I have heard this phrase more than I can even count. Even this morning this phrase was posted in a discussion on my facebook wall.

FACT – We live in a time in which our schools expect our kids to have a computer and access to the internet.

It is a fact that high schools do not have the necessary accommodations or time to allow students to do their work on site. (Remembering how my daughter used to be up til midnight to work on school work)

It is also a fact that even the nicest public libraries do not have enough computers on site to accommodate every student, nor do they allow access for long periods of time if there are other students waiting to use those computers.

Local colleges (including community colleges) usually do not allow high school students access to their computers because they arent students of the school. They also do not allow these kids to check out library books…..

This morning, a friend of mine said that schools should provide computers. It was then that I did actually laugh out loud. Tax payer dollars pay for those supplies. Her response was that this was different. Education money is different than individual money…..

* Free Cell Phones / Obama phones

One has to scratch their head when people start talking about Obama phones. This program can be traced as far back as 1934 with The Telecommunications Act. There were specific provisions to ensure that everyone had access to phone services.

The Lifeline plan was started in 1984 (Ronald Reagan was President at that time) It was further expanded in 1996 (Bill Clinton was President at that time) to ensure that low income and rural citizens had access to these services (http://www.factcheck.org/2009/10/the-obama-phone/) In 1997, they added cellular services. And, furthermore, the Safelink program that everyone likes to associate with President Obama was started under President Bush.

It should be also noted that taxpayer dollars do NOT pay for these phones. The program is fully funded through the telecommunications industry.(http://www.fcc.gov/guides/universal-service-support-mechanisms)

* Lack of empathy

Without going specifically into the Presidential election and differences between the candidates, I can only gather to guess that those who voted against the principles outlines above have a lack of empathy.

And before you start in on the attack for that statement, let me explain…

I paid attention to the election. I listened when one of the candidates actually gave statements like (and Im paraphrasing) making $250000 a year is middle class, ask your parents for a loan, take the money from your savings…..

Those statements are why those of us who live paycheck to paycheck without savings or having rich parents voted for the other candidate.

A facebook friend of mine shared the following ‘fan’ page with a short post about how her child was almost ‘lost’ due to similar circumstances – https://www.facebook.com/JusticeForLucie

Yes, this story is heartbreaking. I couldnt even imagine losing a child, let alone in this manner.

However, there are some things I need people to be aware of if your child is in need of emergency care and is being ignored.

If my child goes to the ER, its usually a true emergency.

My daughter Amanda had alot of asthma related issues growing up. We spent so much time in the pediatric emergency room that the hospital staff knew us by name.

Instead of allowing physician or hospital staff ignore my child, and instead of allowing nurses or other staff chatter amongst themselves about unprofessional topics, go out there and DEMAND that they take care of your child. ESPECIALLY IF THEY ARE HAVING BREATHING ISSUES!

Do not take any of their crap. Dont let them attempt to tell you that some specialist is ‘on their way’. Make sure that someone is taking care of your child. NOW. No, not when they are done with their conversation….NOW.

You see Im what you call a loudmouth. Im not going to allow some ‘stranger’ to tell me some ridiculous nonsense when it comes to the health of my child.

Your child is your child. They cant be replaced. Your child is your priority. The medical issue that had you bring them into the emergency room, needs attending to.

Make sure the doctors and staff take care of your child as if she/he is their priority. And as much money that its gonna cost you for this emergency room visit, get your moneys worth and make them take care of your child!

I dont know if its because Im getting older, or if Im tired of social media, but everyday I see people who have no real health issues complain about pain. So this post is a vent of sorts.

I was diagnosed with lupus in 95. Prior to that, I had a diagnoses of juvenile arthritis. Ive ALWAYS had joint and muscle pain.

Since my diagnosis, Ive had a number of flares of my lupus. During those and subsequently even while NOT flaring, I have joint and muscle pain.

This type of joint and muscle pain cannot be ‘removed’ by pain killers. My body literally gets to the point to feeling like if I even bend a small bit, I will break.

Some days, this pain is excruciating. But, I usually still get up, out of bed, shower, and get ready for my day.

The diagnosis of fibromyalgia came a short time after my lupus diagnosis.

I described that pain and if every nerve in my body is on fire – has needles poking it. Even the clothing I wear feels like its rubbing my skin off.

Ive also had a back injury. Two slipped discs, one ruptured disc, and multiple compression fractures. After months of physical therapy, I required surgery. Several days a month, my back goes into spasm. Despite this pain, I do what I gotta do.

Both of these illnesses qualify me for disability. I have applied for disability in the past. However, my determination to be a productive member of society, coupled with the fact that the disability payments wouldnt pay my bills, has made me aware that I need to work full time.

So yes, despite the fact that my body feels like this pretty much everyday, I get up, shower, and go to work.

I dont want an award for this. Im just tired of seeing people post how much pain they are in and use it as an excuse to not be living to their full potential.

 

Wow, its been over a month since Ive blogged. Ive been really busy, but I will save THAT post for another time…..Today I want to talk about something else…..The SCOTUS and the ACA and how it was upheld this morning.

I am not going to act like this entire bill is wonderful….because there are parts I dont like. It IS a start.

I think I have to say that when the word got out that the Supreme Court upheld the ACA I felt like Erin did: http://queenofspainblog.com/2012/06/28/tears-and-thanks-to-the-supreme-court-for-the-affordable-care-act-ruling/

Erin is like me in many ways. We both have LUPUS. It is a chronic debilitating disease that can attack any organ in your body. Without treatment, many of us would certainly be worse off that what we are.

Today, I have seen posts online that have truly REPULSED me. On days like this, when posts claim that people who are happy about this are lazy, wont work, want things handed to them…..etc etc I get seriously sick to my stomach.

Ive  worked since I was 15. I have paid my share into whatever system should cover people when we need extra help.

If you are truly against paying for other peoples healthcare, maybe you should stop paying taxes. Maybe you should stop paying insurance premiums. And, perhaps maybe you should stop going to hospitals. Because you are paying for other people who dont pay into the system when you pay taxes, pay your insurance premiums and pay your hospital bills.

You wanna know why your tylenol costs more than 5 cents? Well, its because most poor people dont pay their medical bills. They pass the costs of that along to those who DO pay their bills.

So…..shut the hell up about what you pay for and what you dont want to pay for.

I hate to delete half my facebook friends because they post ridiculousness all over the place about how everyone is so entitled….blah blah blah.

You ALL look like selfish jerks.

Yes. ALL of you.

Deal with going to work EVERY DAY when just getting out of bed and getting a shower feels like death.

Deal with doing EVERYTHING right and then BAM being diagnosed with a debilitating disease and going absolutely broke because of that illness AND your then husband walking out on you and your kids. But you still go to work.

Deal with losing EVERYTHING because you paid all your medical bills off and then you get SLAMMED with another flare of said illness.

Try getting insurance when you have an illness like lupus. And IF you can get a policy, see how much that costs.

Try applying for SSI/Disability and waiting for a decision and then being turned down more than once. See how much paperwork is involved in that process.

 

For those people who claim some of us dont need the specialists we do…..yall can just delete yourselves.

Try this. Go to google. Look up how much some of the treatments I HAVE to get cost.

  • * Albumin infusions
  • * Remicade infusions
  • * Benlysta infusions.

And in some cases, they arent even covered at all. It is only thru the tremendous work of social workers at the “Big Pharma” companies that I get these treatments at no cost to me. Guess what? Someone is paying for them. And no, I dont feel ONE BIT bad that someone somewhere IS.

In one case, one infusion treatment costs a MINIMUM of $3700.

That doesnt even include the medications Ive been put on…..or the medications I could be put on.

Im not asking for a pity party. I dont want your sympathy.

I dont even want your money….that obviously is way more important that helping a single mother stay healthy so she can remain a PRODUCTIVE member of society.

Im guessing from some of your posts, you would rather us unhealthy people be placed on some island somewhere to die or something….I dunno.

But heres the rub: If we are not healthy, we cannot work. If we cant work, we lose our homes, our vehicles, our children. Maybe some of us will have no choice but to go on welfare…..which Im guessing is worse than having some of your precious money help us out medically.

I guess losing everything due to an illness is all my fault tho. Cuz ya know…..screw us.

And for all the politicians out there boohooing and getting your panties in a bunch about this……guess what? I wont be voting for you. Especially when your posting about how youre gonna repeal this if elected. I WILL be working for your opposition.

 

Consider me one of those people who have to learn things the VERY hard way. Its official. I am a doofus. Yea, that might sound a little harsh….but its the truth. I spent the majority of my life thinking I could do what I wanted, not listening to the doctors, and be completely fine.

Sure, it didnt start out like that….When I was first diagnosed with lupus in 95, I listened to what they told me to do. I changed my diet, changed my lifestyle, etc. But as I got better and went into remission, I fell back on those old habits.

Since the initial remission, Ive had several additional flares and subsequent remissions. And, while I would like to say that I changed what I had to each time, that would not be the truth.

I actually went a full homeopathic route until this last flare. I am VERY VERY VERY lucky to not have killed myself not getting the correct treatment. And to be honest, I could have actually lost my kidney.

I am still kicking myself for that stupidity.

Ive been in this most recent flare since November. Yes, November.

My current treatment has been at a standstill due to other health issues that have arisen….which, I could just kick myself for, since that is also connected with my unwillingness to do what Im supposed to be doing.

Since my last post, Ive been on rescue inhalers, inhaled steroids, nasal steroids, oral steroids, and antibiotics.

I am not getting better.

I still do not have my voice.

I still have issues catching my breath doing the most trivial of tasks

With one exception, this entire experience is MY FAULT.

And now, Im faced with the fact that my voice will never recover. I may get some vocal range back with intense speech/vocal therapy, but I will never have MY voice again.

My lungs may never recover. With some of the changes Im making NOW, I might get SOME of my lung function back…..SOME.

I am extremely mad at myself because I could have prevented these issues by making REAL lifestyle changes.

And, in case you were wondering just what it is Im going thru…..the diagnoses is two fold. My lupus has attacked my pulmonary system and due to the other factors mentioned above, I now am also diagnosed with emphysema and COPD.

This effectively means that I have NO choice now but to make lifestyle changes.

This is not the way it should have went down. If you are reading this and not watching what you eat and are a smoker (even an occasional smoker), MAKE THE CHANGES NOW!  Do NOT wait til you get THIS sick.

It all started about a month ago. Our local allergy season started off with a bang. Grass and tree pollen are my biggest problems. The lack of rain didnt help.

As usual, I began taking my allergy meds, knowing that if I didnt, I would get really sick. About a week later, I felt myself becoming ‘sicker’ (headaches, coughing, etc) which usually means that all that ‘blech’ from my allergies has turned into a sinus infection…again.

I did my best to maintain…..but then I lost my voice AND had this squeaky type noise after each cough. Initially, I was worried that somehow I picked up whooping cough. (We have a daycare in our building and Ive been reading articles about the rise in whooping cough)

So, off to the ER we went.

Let me just first inform you that my now 22 year old daughter has asthma. She was diagnosed when she was young. We basically lived in St Agnes, we were there so much. But never in all my 40 years, have I ever had to be seen by respiratory therapy…..until that day in the ER.

I got ‘nebbed’. Diagnosis, bronchitis. (Another first)

So, I go home with prescriptions in hand.

You see, I DO lose my voice every single year. Ive had my throat ‘scraped’ several times…..which, Im now told leads to permanent vocal damage.

Just. Great.

Yea, Im a loud mouth. And yea, Im pretty proud of the fact that you can actually hear me over race cars at the track. So, me at whisper levels isnt what we call…..fun.

But to lose your voice for 3 weeks? This isnt normal. It isnt even ‘fun’ for my family any longer.

So yesterday my doctor had me see an ENT and he performed a biopsy of my vocal chords. I even got to see my vocal chords up on a monitor. However, I think he should have prepared me for seeing the tool they used to scrape my throat….

Think sickle…..grim reaper

Im sure my eyes just about popped outta my head.

So, Im forced to write everything I want to say….Im told that after several procedures like this, you can actually rip a part of your vocal chord.

So, Im awaiting the word from the doctors office….which apparently has a strange sense of humor. I was left a message this morning that said, Hey, we need you to stop by this afternoon. Just have someone give us a call if you cant make it. We will assume you will be stopping by if no one calls us to let us know otherwise.

Pretty amusing, huh?

No? Alright then, watch this…..cuz I got bronchitis – Aint nobody got time for that: 

 

 

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