It's snowing...so naturally I can't breathe

So it's a blizzard of a blizzard around these parts (Grayson, GA).  Good news:  My hubby, kiddos, and I get 3 days to do nothing but sit around the house and eat LOL.  Bad news:  my lungs HATE this weather.  
Part of having Wegeners is having crappy lungs.  I first found out I was officially sick when the doctors in Tallahassee, FL (where they give monkey's medical degrees) found nodules in my lungs.  I spent 2 weeks in the hospital thinking I had lung cancer (all the while waiting to deliver my baby girl).  After I had Abigail, they performed a needle biopsy.  WRONG!  So they came back and said I had some disease that no one had ever heard of before.  WRONG! So they put me on 2 months of at home IV antibiotics (bactrim and zosyn).  WRONG!  So after I was off the antibiotics for about a week, I went into the hospital with joint pain and coughing up blood.  They did a chest xray and said I had pneumonia.  WRONG!  So I was in the hospital about a week.  I was coughing up blood.  I was tachacardic (heart beat was resting at about 124).  I was in severe pain.  I was coughing uncontrollably.  I was blowing aliens out of my nose.  I came to Georgia and finally found doctors (thank God for Dr. Lawrence and Dr. Kaplan and ALL the other doctors that saved my life) that knew what they were talking about!!!!  I had another lung biopsy to confirm the diagnosis of Wegeners, but this time they took a piece of tissue.  I was hemmoraging from my lungs at this point.  I was put in a 10 day medically induced coma to help give my lungs a chance to heal.
The point of this story?  My lungs have been through the ringer and suck.  Even now (2.5 years later) I have lung nodules and "asthma."  Needless to say, the cold makes it very hard to breathe, so when my son wants to go sled down our driveway....here comes momma...hacking and coughing and out of breath.  I wanted to sled too though AND I WILL NOT let Wegeners dictate my abilities or disabilities.  My song deserves a momma that can play in the snow and sled down a driveway.  So I decided to google the reasons why I can't breathe in the cold and this is what I came up with:
  The reason why many asthmatics suffer worsening of symptoms when breathing in cold air is due to hypersensitive airways and not a cold allergy. Inspiration of cold air leads indirectly to drying out of the airways and thereby bronchoconstriction. Breathing in through the nose is also more difficult in extremely cold weather. In asthmatics, mouth breathing leads to even more constriction of the airways, as the air is not pre-warmed prior to reaching the airways.

The nose plays a very important role in protecting the airways against untreated air, and it has been shown that the size of the nose has an impact on the ability to breathe through the nose. The Inuit live in an extremely cold climate (in Greenland) and studies have shown that they have higher nasal cavities than many other ethnic groups!  Well that's just great!  I have a collapsing nose that cannot save me from the cold and I have SUPER sensitive lungs.  Moral of story:  No breathing for Sara.

Cold and exercise

It is important to be aware that exercise in extreme cold can lead to worsening of asthma where appropriate protective measures are not taken. So-called exercise-induced asthma may be worsened indirectly by strenuous exercise in cold weather because of excess supply of cold air into the airways. Problems with exercise-induced asthma often occur as a result of strenuous exercise or competition at temperatures lower than minus 15^oC.  Well I don't have to worry about this, because 1. It's hard enough to exercise indoors and 2. I wouldn't be caught dead outside in MINUS 15 degree C weather.  :-)

Normal airways too can to some degree react to exertion in cold weather – both in animals and humans. Tissue samples from the respiratory passages of sled dogs which have taken part in Alaskan dog-sled races have shown various degrees of inflammatory reactions – exactly the same as in our cross-country skiers when competing in cold weather.

It is nonetheless important to remember that physical activity improves fitness and the ability to conquer asthma. Asthm atics are able to participate in regular activity, including in cold weather, providing they are well protected against cold air at the nose and mouth and with the appropriate amounts of preventive medicine. Exercise should be adapted to the individual. In general, asthmatics should not perform fitness training at temperatures of less than minus 5^oC.

Cold and particle contamination

In towns and built-up areas, cold days with minimal wind and high traffic density will result in increased concentrations of gases and particles in the air. Nitrogen dioxide (NO₂) from internal combustion engines (older cars) may contribute to increased air contamination. NO₂ exposure, particularly in asthmatics, can result in reduced lung function. In Norway, exhaust fumes, in particular from diesel engines, contribute to increased atmospheric pollution. Together with road traffic, wood-fired central heating on cold days will also be a significant source of contaminated air, resulting in large quantities of suspended dust, the greatest emissions coming from old wood stoves. Suspended dust can both trigger and exacerbate the disease in people with chronic airways disease. Suspended dust may also act as a vector for allergens, which can trigger allergies.   Good news is I have gas logs and I am running my humidifiers all over the place.  Also, at least for right now there is NO ONE on the roads.  

So basically cold weather just about kills me, but you better believe that I was out there sledding down the drive way and throwing snow balls with the best of them.  I might have had to take a puff off my medihaler and I might have looked completely ridiculous huffing and puffing up the hill, but I did it and I'm proud of myself.  I'm glad I can enjoy the beauty of the outside as well as the inside.  I think that I'm now going to farm my farmville farm LOL and snuggie in bed.  Good night all!

S

Soda and Health

Today I went to the zoo with my friend Marla and her 13 year old (Ruth) and her 3 year old (Isaac).  I was so pleased that I felt well enough to go to the zoo considering yesterday I felt like CRUDOLA!  I'm still coughing and my voice is in and out but overall I'm doing pretty good today.  My kiddos always have a good time at the zoo and it's good exercise for me to walk around the zoo.  Plus it keeps my mind occupied and so it helps battle the depression.  The only thing that was rather difficult was staying away from the soda.  We have always bought zoo cups and filled them with either barqs or coke.  I'm trying very hard to stay away from soda right now.  Did you know:
1. pH of soda=pH of vinegar....ummm gross and not so great for stomach lining.  Pluys I already take a stomach protection medicine (omeprazole) to help protect my stomach...I don't think I need to add to that problem by drinking acid.
2.  Soda leeches calcium...The phosphorous in soda is what causes it to leech calcium from your body.  Again considering the steroids cause my body not to absorb calcium as well (I have to take supplements), it's probably wise not to hinder my body even more than it already is hindered.
3. ”In an interesting experiment the sugar from one soft drink was able to damage the white blood cells’ ability to ingest and kill bacteria for seven hours.” Well that's just freakin' fabulous.  My body's immune system is virtually destroyed, but I think I'll take the few remaining white blood cells and make them worthless...good job me! LOL.
4.  Each Soda increases obesity 1.6 times.  I know it's gotten worse since I stopped drinking diet sodas (which are basically formaldehyde).  I mean I have enough to battle with the prednisone and the lack of energy and the joints hurting...I don't need to damage my diet process with coke...I don't like it THAT much.
5.  Then there are preservatives in soda that can cause rash, asthma, eczema, etc.  Well considering I can't breathe as it is, I guess I should steer clear of anything that adds to wegeners.
6.  Finally....there is NADA, NOTHING, ZERO, ZILCH that is redeeming about soda.  I mean I'm a serious caffeine addict, but I can get that from tea and coffee.  Why would I consume something that has no value?  


All that being said, I REALLY WANT A COKE LOL.  I know those things are addictive so I'm not too surprised I want one.  Today at the zoo it was VERY hard, but I got a lemonade and let the kids drink the one coke that I purchased.  I know I know you are thinking...why would you let your kids drink that crap if you won't drink it?  I shouldn't, but it was either that or $4 lollipops and so I figured 1/2 a coke couldn't hurt them that bad.  Eeek.  They mostly live on severely watered down apple juice and milk.  I only give them water at night, but I'm trying to break them of that habit, because I would REALLY like them to stay dry through the night.  


So all in all, I'm really making some positive changes in my life.  I thought I was NEVER going to be able to kick the diet coke habit and I did and I didn't think I could make it through a Zumba class and I did.  I get to officially join the gym on the 15th.  I'm SOOOOO excited!  You'll get to read all about gyms and saunas LOL.


I'm also a people watcher, so I'm sure with my going to the gym (hopefully often) that you will get to read about all the different folks that go to my gym.  Already I have done zumba with a 65+ year old lady and I've seen a 600lb+ man walking into the gym.  That guy inspired me because I'm sometimes self conscious at my size in the gym...I couldn't imagine how he felt.  


Well, I have many things to do and many clothes to fold.  Buenos noches!


Sara

Stress and Health

Well I don't know why I have to learn this fact over and over again, but stress is seriously bad for your (my) health.  Recently my grandmother (who is 83) became very ill.  She has been battling congestive heart failure now for quite a while, but she had two recent hospital stays that revealed that matters are much worse that they have been.  Let me first paint the pictures of my (oh so fun) dysfunctional family:.  

Player 1:  Jacqueline:  Grandmother to me and mother to my mom and my aunt.  She is as stubborn as an ox and she has always been the matriarch of the family.  I lived at least 1/3 of my time with her while my mom flew for National, PanAm, and Delta airlines.  She lost my grandfather 19 days after their 50th wedding anniversary.  She never wants to admit she is wrong or that she needs help.  She now has 20-15% heart function, dimensia (bad), 90% blockage in one of her upper left chambers, and arthritis.  My grandmother has enabled by aunt her whole life and she continues to do so.  She is oblivious to reality sometimes.  She believes most of my aunt's cons and she even wen tto the jail almost every week when my aunt was "in camp" aka prison.     

Player 2:  MOM (Kathi):  My mom was a flight attendant for 35 years.  She is and has always been VERY politically involved.  She is a die hard liberal and she is not one to keep that fact to herself.  She has offended many a person by essentially calling them stupid idiots because they have beliefs that differ from hers and (in her eyes) cannot debate  their point of view.  My mother divorced by father (who will be featured in a future blog) when I was 8 months old.  She has been a single mother most of her life.  She is very intelligent and educated.  She has SHITTY taste in men though.  She has been married 4 times and they've all been BLAH!  Tom (my step father) has basicially robbed my mother blind.  She gave him all her money and credit to try and "save" his business (which ultimately failed anyways).  She has fibromyalgia and arthritis and asthma.  She is in constant pain from a neck injury she sustained while working for Delta.  She using alcohol to medicate herself (physically and emotionally).  Her therapist says she's a binge drinker, but I think she's more of an alcoholic.  I've never seen her have 1 or 2 glasses of wine.  She has 4+ glasses every time she drinks.  She resents my grandmother for never treating her like she existed and for no acknowledging her for all the things she's done right in life.  She resents my aunt for being the leech of the family and for getting everything she wants.  She wants to be able to go in a fix my aunt and my grandmother, but her communication skills suck!  Besides the booze, one of her coping skills is to get MAD.  She just starts yelling and of course everyone puts up an immediate wall when she offends them.

   

Picture of me (left) and mom (right)..yes we are virtual twins

Player 3: The Aunt:  Karla:  Here we have one of the most complicated players in this game.  My aunt has been a leech and a druggie her whole life.  She is addicted to pain pills.  She has been married a couple of times, but basically leeched off of them until they were of no use to her.  She is bi-polar, adhd, ocd, and borderline mulitiple personality.  She will not seek professional psychiatric care, but frankly she likes being crazy.  She is on disability, but lives with my grandmother.  She's spent HUNDREDS of dollars on farmville cash (a facebook game for those who aren't familiar),  She spend 4 years in jail for reckless driving, driving under the influence, and possession.  She feels like she did her time and now everyone should feel bad for her.  She claims to be sober, but I found a list of medications in the bills I was given, which included fiorinol, loratab, and soma.  She doesn't admit to anything.  She cons doctors and doctor shops.  She is currently the "care taker" of my grandmother.

This is a picture of her with my children (Abigail and Mikey).

Soooo...since I'm the only one in my family that has a lick of sense and communication skills, I have been the one to have to set up hospice for my grandmommy and pay the bills.  We had to go to the bank to get me put on grandmommy's checking account and of course the whole time, Abigail is wailing and grandmommy looks like she is about to pass out.  Then Mary (the bank lady) has an overflow of attitude.  I know she was probably thinking 'Here comes 2 people that I've never seen or heard of before and Mrs Jacque, who looks like hammered hell and they are trying to get Jacque's money."  That is SO not the case!  I just don't want the phone or electricity  to be turned off and I can't trust either her or my aunt to deal with the bills.  Also, I know my aunt is still playing games with the meds.  While reading through the hospice notes, I read:  Patients daughter called to say that patient is in pain.  Upon arrival, there were no noticeable bruising or redness.  Patient is no complaining of pain.  Loratab (5mg) are ordered.  Patients granddaughter will pick up.  WHAT!?!?!  Patient's granddaughter doesn't agree with the damn order!  Then I find out that when the nurse said she was going to order Loratab, my Aunt went to the bedroom and came out with a pill bottle and says "I have Loratabs."  Of course the nurse laid into her and said that my grandmother could NOT take medication that strong.  I would not be surprised if my aunt accidentally overdoses my grandmother.  I feel bad because there is not much I can do to prevent that.  I plan on making a call to hospice tomorrow to at least warn them about what is going on.  

So between the dealing with my crazy family non-stop for 3 weeks and having MORE responsibilities put on me, my body has decided to go into shut down mode.  I was so excited that I HAD been feeling better.  I was even able to do a whole Zumba class, but now my body says "SLOW DOWN BITCH!"  LOL.  I have a cough (that sounds like croup).  I have breathing issues and my throat is WAY hurtie.  All I want to do is lay in bed and drink coffee and/or tea.  I'm taking mucinex and doing breathing treatments.  I'm not changing any of my other meds.  Of course I can't take too many immune boosters, because then my wegeners will go batty.  I'm hoping to feel better by monday.  I can't afford to be sick right now.  I have Mikey's bday coming up and my friend's daughter's bday.  I have a preschool valentines party to plan and of course I have to keep the crazies happy.  :-P 

More to come later!

S

In the beginning

In the beginning there was a patient with Wegener's Granulomatosis aka Vasculitis aka evil fucking disease.   I'm starting his blog to document what it is like living with a disease, but more specifically living with Wegeners.  I highly doubt I will have a following.  I know I'm mostly talking to myself.  I'm ok with that though.  Even if one person gets some knowledge or comfort or really anything from this blog, then it was worth my time.  I know when I was first diagnosed, all I wanted was someone to relate to...someone who had been through what I had just been through and could listen with a knowing ear.  If I can be that ear to someone then I feel like I've achieved one of my life's purposes.  
I will probably reveal my story in one of the blogs to come, but it is complicated and long and today I just want to talk about today.  I know each day is going to bring it's own challenges and obstacles, but today I'm feeling like the obstacles are many.  
For the past few weeks I have been fighting a respiratory infection of some sort.  I don't know if it's bronchitis or something else, but I know that the Levequin (antibiotic) is not working to alleviate any of my symptoms.  When I cough I feel like something (my windpipe maybe) is collapsing.  It is the strangest feeling.  I cough like normal and then all of the sudden it's like someone has launched my lung upward.  It brings new meaning to the term "coughing up a lung."  Of course the hydromet cough syrup doesn't really help and I'm left to deal with it.  I feel like alot of the things that happen because of Wegeners or because of the medicines I take to control the wegeners, are things that have no solution...I just have to deal with them.  
I'm also dealing with extreme fatigue.  I know that this disease can make one tired, but this is fatigue like I haven't had in a long while.  It's like I cannot get enough sleep even though I'm sleeping through most of the day.  Unfortunately, I don't have the luxury of sleeping through my hard times, because I have two children (ages 4 and 2).  Don't get muy wrong, I'm SO grateful that I have them.  They are the reason I keep going and the reason that I've survived the last 2 years.  It's just very hard to be super mom and have wegeners.  For that matter, it's hard to deal with fatigue or pain, when you have two little people that expect nothing less than your best.
Another thing I've been suffering with recently is some depression.  I've dealt with depression in the past, but I can honestly say that I got much better when I started the Zoloft and was given a second chance at life.  The weather has been very cold and dreary though and that makes my mood very blah.  I know I'm also depressed, because I'm just sick and tired of being sick and tired.  I look at the state of my house and I just want the energy and motivation to clean and decorate for Christmas.  I want the energy to play with my kiddos.  I want the energy to dance and sing and really get into life.  Instead I'm in bed writing this blog and thinking about all the things I wish I was doing.  Another thing that causes depression, is my weight.  I'm the biggest I've ever been in my whole life.  I know the doctors and really everyone I talk to says that it's the prednisone (steroids) that make me gain the weight, but just because I know WHY I'm gaining weight, doesn't make it any less annoying and painful.  When I say it's painful I mean literally and figuratively.  Of course it hurts my self image and it hurts my sex life (because I don't feel pretty any more), but it also HURTS to be 230 lbs.  It hurts my knees and it hurts my back.  It hurts to bend and it hurts to breathe.  It takes longer to do things and requires more energy.  Part of me just wishes I could just not eat...that would make life easier, but unfortunately I enjoy food too much.
On that note, I've been nauseous the past few days.  Lawd only knows what this is about.  I'm not usually nauseous, but my stomach has been torn up for about a week or so.  I had a couple days of diarrhea and now I'm past that, but left feeling super blah.  I've only puked once, but I kinda feel like if I could puke more I would feel better.  I feel better when I'm actually eating (like crackers or soup), but after I'm finished eating, I go right back to feeling like I have a hangover.  UGH!  When you combine this with the cough, I'm left feeling like super crap.  
So what this all boils down to, is today is not a good day.  IT hasn't been a good day for about a week now.  I don't want any readers that I might have to think that this is going to be the tone of every entry though.  Today I'm having a pity party, but not every day is bad.  Wegener's might modify my life, but it hasn't destroyed it.  I will continue to push through pain and depression and disease and get as much as I can out of life.  I will not let Wegeners win!  
Well that's enough for now.  Thank you if you are reading this!