Saturday, December 31, 2011

Ending And Beginning Anew

2011 was a roller coaster year for so many people. My year began with a lot of stress, which eventually got sorted. The summer was crazy with stuff for Joan and Rick's wedding, and September gave me a new brother in law. September also brought someone new into my life, and the rest of the fall season seemed to go by so quickly with him in it. I think the best thing is that this entire year I've been so healthy, for the most part! I've lost some dear phriends, and gained many new ones. I'm praying that 2012 brings many good opportunities for my family and friends, and a cure for PH!! Happy New Year everyone!!

Well, Crap!


Those were the words used many times by a sweet phriend whenever she was trying to express frustration over something. Those were the same words many of my phriends who knew Annette used today when we found out she had passed away this morning. It came as a surprise to so many of us. She had some health struggles in the past year in regards to her PH, but lately, many who talked to her reported that Annette said she was feeling ok. Annette died in her sleep, which is the only thing that brings me some comfort. I am hoping that she went peacefully.

Annette's PH journey began a little over 7 years ago. She posted quite often on the PHA message boards. She was a 1st grade teacher, and once she was put on Flolan, she tried so hard to keep up with her job. Eventually she had to resign, or retire. I can't remember which. After that, she did volunteer reading in classrooms. She also did so much with the Omaha PH support group. She helped raise awareness by being a part of a large fundraiser that included silent auctions. I was able to donate jewelry one year, and she was so incredibly appreciative of it! The fundraiser always makes thousands of dollars for research, and I'm sure the next one will include something to remember how much Annette did to help.

Annette kept a most entertaining blog. My favorite posts were always about her 2 dogs. She had such a talent of writing about there silly adventures that I often found myself howling with laughter while reading! She often always gave book or movie reviews, complete with how many "puppy paws" she'd use to rate the book or movie. Sometimes I would write my own blog about something I watched or read, and I'd borrow the puppy paws! lol She thought it quite funny!

Annette sent me a dozen roses on my birthday the year that Mason died. She was a sweet person who often thought of others before thinking of herself. Her kindness, her giving of herself, her thoughtfulness, and her laughter are the things we will all miss the most. She leaves a very doting husband and two loving sons behind. We are all heartbroken over her loss, I can't imagine what they are going through. RIP Annette, breathe easy forever.

This was not a great way to end the year. I pray so hard that 2012 is the year a cure for PH is found.

Sunday, December 25, 2011

Merry Christmas!


I wish all of you a very Merry Christmas! I hope you're able to celebrate with loved ones. Remember that Christmas is not about the gifts we give, it's about the wonderful gift God gave to us: His son, Jesus. Jesus was born to show the love God has for His people, and to show that we should all be sharing that love with others. He is the reason for the season!

Thursday, December 22, 2011

Layaway Angels

Last week I read an article about a woman who went into a Kmart (I can't remember what state), and asked if she could pay off some layaways for people who had toys on their list. Since then, I've heard of at least 8 other stories of total strangers paying off layaways for people, mostly at Kmart or Walmart. There were a couple instances in this area, too. I think it's so wonderful that there are some very giving people out there, and I only wish that I had more money to be able to do the same thing. These people are being called "Layaway Angels," and the name is certainly fitting! They are bringing unexpected joy to the families of people who might not be able to have a good Christmas. To me, their kindness is definitely what the spirit of Christmas is all about!!

Wednesday, December 21, 2011

Ooops

My mom didn't make it over here today like she wanted. She was too busy cleaning and getting ready for my sister's arrival on Friday. Oh well, that's ok! I changed the bedding and didn't start a recipe until later in the afternoon, so I only made one thing instead of two. I made the pecan turtle bars, and MMMMMMMM. I'm not sure I can share them. lol I'll make the other cookies tomorrow, and maybe the pecan pie. We'll see how much energy I have!

So, I take my Revatio (Viagra) pills at 7am, 3pm, and 11pm. It's supposed to be taken 8 hours apart. This afternoon around 3, I was on the phone with my mom while I was trying to open the new bottle of Revatio tablets I had, and during the conversation, I thought I had taken my dose. After I got off the phone, I spent 5 minutes struggling to remember whether or not I had swallowed the pills. What the heck??? This isn't the only time I've done this. There have been plenty of times that I go to take my pill (no matter what it is), and then not even 10 minutes later I can't remember taking it!! So today, I kinda thought I didn't take the 3pm dose, so I took it. Again? I don't know. I began to doubt myself as soon as they went down my throat. UGH!! So, for the next hour I just took it easy, and laid down. Just in case I felt faint or something! But since I didn't have any major side effects from the possibility of taking too much Revatio, I assumed that I didn't take a double dose. So, I guess this means I really should buy a pill box, because it would probably be a lot safer knowing for sure that I took a dose!

Getting Prepared

Christmas is 4 days away, and it's hard to believe! I am pretty much set gift-wise. I've wrapped everything except for K's gift, which is in a huge box. My wrapping paper won't cover it at all! I was going to buy some more, but my mom said she'd bring some over later. Once the box is wrapped, I'm definitely done!

My sister, Lisa, is going to make her way home from NC tomorrow. They are driving, so they'll travel to PA to where my aunt lives and spend the night before finishing their trip on Friday. There's no way they could make that trip a full day with an almost 3yr old! I'm so excited to see them! They will actually be here to celebrate Christmas ON CHRISTMAS!! Usually they would come the day after, but this year, they'll be here earlier. My family will be going to Mandy's house for dinner and opening gifts. I'm looking forward to it so much! I'm crossing my fingers that K will be able to come for dessert. It would be nice if he could, but he spends time with his family, too, so I understand if he can't!

I'm supposed to be making some cookies today with my mom. I'm not sure what she's doing since she isn't here yet. lol I'm going to make peanut butter cup cookies, and pecan turtle bars. They both sounded yummy! I had to unwrap all the Reese's peanut butter mini cups and put them in the fridge, and let me tell you how hard it was not to eat any of them!! The recipe calls for 40 mini cups, and I bought a bag with exactly 40 in them. Absolutely no room for snitching, darn it all!! lol

I think the only thing that is NOT ready for Christmas is the weather. Today is rainy and 50 out. 50!! For Niagara Falls this time of year, that is just nuts!! Don't get me wrong, I actually don't mind that it's not freezing out, but I would like a white Christmas. I'm just not sure that's going to happen! If we do get any snow, it'll probably only be a couple inches. But I guess I'll take whatever comes!

Friday, December 16, 2011

It's A Major Award!

Wow, I won! I was not expecting to win, but I did! What did I win? Well, in my last post I mentioned a blog giveaway by Sunshine, and the deadline was last night. There weren't too many who entered, but by random draw, my name was picked to win the prize! I will be receiving a cookbook that supports the Cayman Humane Society, and also a little surprise (which I can't wait to see!)! Thank you very much, Sunshine, for doing this blog giveaway! I've entered a few of these on various blogs before, but this is the first one I've ever won! I will definitely post some recipes that sound delicious or that I end up making after I receive it in the mail! :)

Wednesday, December 14, 2011

Do You Like Giveaways??

Then sign up for this Christmas giveaway, ending on Thursday at midnight EST!! It's a great cookbook filled with hopefully delicious recipes, and supporting the Cayman Humane Society on the Cayman Islands! This giveaway is being....well...given away (hehe) by a lovely blogger I've been following for quite some time named Sunshine! I'm always jealous of her posts because she lives in such a beautiful WARM place!! lol Anyway, if you'd like to participate in this giveaway, please follow the link! Good luck to all who enter!!

http://suchlifeinthetropics.blogspot.com/2011/12/christmas-treat.html

Tuesday, December 13, 2011

Holidaze

Yes, I'm here. I haven't posted in several weeks, but I am here and I'm doing ok! I keep wanting to write something, but I either A) Have so much I want to say and by the time I want to write I'm tired and I just go to bed, or B) I just have so much I want to write that I don't know where to start, and then I figure maybe I'll do better tomorrow. Tonight, it's a combination of both, and so with that, I'm posting this short blurb to say that I am around, and that I really do hope to be able to write something with more sustenance very soon!!!

Monday, November 21, 2011

Cure?

The only cure for PH is a lung transplant. Not everyone is eligible for one, not everyone wants to go through one. It is not an easy fix. Transplant brings along many complications, and an entirely different set of medications for life. This is why we need more PH awareness and a cure!!

Sunday, November 20, 2011

Inhaled Medication

Ventavis (iloprost) was the first FDA-approved inhaler treatment for symptoms of PH. It was approved in 2004. Ventavis is taken 6-9 times a day, depending on the response of the patient. Ventavis can cost around $60-70,000 a year.

The biggest complaint I've heard from patients on Ventavis is the amount of times a person needs to take the treatment a day. In order to fit up to 9 treatments, it needs to be done about every 2 hours. Another complaint is the setup and the cleanup, which can be time consuming. However, Ventavis has helped many PHers, so I guess you just have to look at the benefits outweighing the annoyances.

Saturday, November 19, 2011

Oral Medication IV

Adcirca (tadalafil or Cialis), was FDA-approved to treat PH symptoms in 2009. It works the same way Revatio works. The difference is that Adcirca is taken once a day, whereas Revatio is taken three times a day.

Friday, November 18, 2011

Oral Medication III

Revatio (sildenafil or viagra) was FDA-approved for treating PH symptoms in 2005. It works by relaxing the blood vessels in the lungs, which allows the heart to pump more blood into the lungs easier than when the vessels are constricted. Revatio is taken 3 times a day, 8 hours between each dose. Revatio costs at least $10,000 a year. Nitrates or nitric oxide should NOT be taken with Revatio, as it can cause an unsafe drop in blood pressure.

I began Revatio on August 16, 2007. I felt the need to add something along with the Tracleer, because I didn't feel it was doing enough for me almost a year after taking it. I still waited pretty long before asking about Revatio, but when I finally did, my PH doctor agreed to let me try it. I really feel that the combination of Tracleer and Revatio have been keeping me stable in the last few years! I hope it continues that way, but if I need to, I can increase the amount of Revatio I take before considering another drug to add to my daily regimen.

Thursday, November 17, 2011

Oral Medication II

Letairis (ambrisentan) is another oral medication that can be used to treat symptoms of PH. It was FDA-approved in 2007. It works much in the same way as Tracleer does, only it is taken once a day. Also, just recently monthly bloodwork to check liver enzymes are no longer required, although some doctors may want their patients to continue to get theirs checked. Letairis can cost around $70,000 a year.

Wednesday, November 16, 2011

Oral Medication

Tracleer (bosentan) became the first oral treatment for PH, being FDA-approved in 2001. It is taken twice a day, 12 hours apart. Tracleer can cause liver damage, which is why monthly bloodwork is required by all PH patients taking this med. Tracleer can also cause severe birth defects, which is also why women taking Tracleer must also have a monthly pregnancy test. Tracleer costs almost $70,000 a year.

Tracleer was the first PH med that I started. I took the first pill on Oct. 12, 2003. While I didn't notice any huge difference for quite awhile, the first tiny inkling I had of the med working for me was almost a month after I had started it. I had to go vote, and on the way back to my car from the building, it suddenly dawned on me that I wasn't as short of breath as I usually get from walking a distance. I got in my car and cried. Months later, I was dancing at my sister's wedding. I couldn't believe what a change Tracleer made in my daily living, and it made me incredibly thankful for the advances in science since the time I was diagnosed with PH as a baby!!

Tuesday, November 15, 2011

Another Medication

Remodulin (treprostinil) is another treatment for PH that can be delivered in three ways: by IV through the veins, or subcutaneously (under the skin), or by inhalation (called Tyvaso). There are also trials that are being conducted right now for oral Remodulin, and hopefully that will be approved at some point as another way to use this med. Depending on the dosage a patient is given, Remodulin can cost at least $100,000 a year.

If I were to need another drug added to the regimen of pills I'm taking every day to treat my PH symptoms, I would probably ask my doctors about adding Tyvaso. Once again, the IV treatment would be risky. The huge drawback with the subq version of Remodulin is the pain. I have known many PHers who just can't bear the pain that goes along with that way of using Remodulin. So I'm not sure I could do it, either! But the inhaled version seems to be much easier, so I would go along with that IF I were to need something more.

Monday, November 14, 2011

The Gold Standard

Flolan (epoprostenol) was the first FDA-approved treatment for PH symptoms. It only lasts a few minutes in the blood stream, which is why it needs to be delivered continuously by IV through a permanent catheter placed in a large vein going into the heart. Complications can include jaw pain, foot pain, headaches, rashes, as well as site infections. Not all patients experience all these problems. Flolan can cost approximated $100,000 a year, but may be higher depending on a patient's dosage.

I have not been put on Flolan to treat my PH symptoms, and I may never need it. It's a powerful medication that has helped many PHers improve, but the risks may outweigh the benefits for some. In my case, because of the 2 holes in my heart, my cardiologist feels that Flolan would be a last resort option for me, most likely if I were waiting for a lung transplant. The risk of line infections is too great at this point, when I'm doing considerably well. But I know if I ever needed Flolan, I would do it. Anything to keep me going, even for a little bit, is worth it to me!

Monday, November 07, 2011

Eisenmenger Syndrome

I know I have mentioned that I have Eisenmenger syndrome. Tonight I found a great link describing exactly what it is! I hope you're able to spend a few minutes reading it!

https://www.memorialhealth.com/healthinfo/content.aspx?pageid=P08482

If you don't want to click on the link, the info is copied below:

Eisenmenger Syndrome

What is Eisenmenger syndrome?

Eisenmenger syndrome is a condition that includes a collection of symptoms: cyanosis (pale blue or grayish skin due to decreased oxygen in the blood), pulmonary hypertension (high blood pressure in the blood vessels of the lungs), and erythrocytosis (increased number of red blood cells in the blood due to decreased oxygen in the blood).

Eisenmenger syndrome primarily affects adolescents and adults with certain congenital heart defects that were repaired late (after the first year of life) or that were never repaired. Eisenmenger syndrome, however, can occur in infants or children born with pulmonary hypertension; therefore, symptoms related to cyanosis may occur much earlier in life.

What causes Eisenmenger syndrome?

Eisenmenger syndrome progresses over time as a result of the effects of high blood pressure in the lungs. This high blood pressure, or pulmonary hypertension, occurs because of congenital heart defects that cause blood flow from the left side of the heart to the right side of the heart (left-to-right shunt). Congenital heart defects of this type include:

*patent ductus arteriosus (PDA) - a connection between the aorta and the pulmonary artery which allows oxygen-rich (red) blood that should go to the body to recirculate through the lungs.
*atrial septal defect (ASD) - an opening in the atrial septum, or dividing wall between the two upper chambers of the heart known as the right and left atria.
ventricular septal defect (VSD) - an opening in the ventricular septum, or dividing wall between the two lower chambers of the heart known as the right and left ventricles.
*atrioventricular canal defect (AV canal) - a complex heart problem that involves several abnormalities of structures inside the heart, including an ASD, VSD, and improperly formed mitral and/or tricuspid valves.

Because the pressures within the left side of the heart are normally greater than those within the right side of the heart, an opening between the left and right side of the heart will cause blood to flow from the left side of the heart into the right side. This left-to-right shunting of blood within the heart causes increased blood flow in the blood vessels of the lungs. The increased blood flow in the lungs' blood vessels causes increased pressure in these vessels (pulmonary hypertension).

If the pulmonary hypertension continues without treatment, the pressure in the right side of the heart may increase to the point that the right side pressure is greater than the left. When this occurs, blood will flow from the right side of the heart to the left (right-to-left shunt), which means that oxygen-poor blood is mixed with the oxygen-rich blood pumped out to the body from the left ventricle.

A reversal of the shunt resulting in a right-to-left shunt causes insufficient oxygen in the blood. In addition, high pressure in the lungs causes progressive changes in the pulmonary blood vessels which result in irreversible damage to the lining of these blood vessels. Fibrosis (the growth of scar tissue due to infection, inflammation, injury, or even healing), and thrombus (clotting) may also occur. The changes inside the lung blood vessels may be referred to as pulmonary vascular obstructive disease or secondary pulmonary arterial hypertension (PAH).

What are common symptoms or complications of Eisenmenger syndrome?

Symptoms:

cyanosis (pale blue or grayish skin due to decreased oxygen in the blood)
dyspnea on exertion (shortness of breath with activity)
shortness of breath at rest
fatigue
chest pain or chest tightness
heart palpitations ("skipping beats or racing")
headache
dizziness or syncope (fainting)
paresthesias (numbness and/or tingling of fingers and toes)
blurred vision

Complications:

blood clots (e.g., deep vein thrombosis in extremities)
hemorrhage (bleeding)
stroke
brain abscesses
gout

Worsening of symptoms or new onset complications can be early warning signs of changes in overall condition and should be evaluated by your physician as soon as possible.

The symptoms of Eisenmenger syndrome may resemble other medical conditions or heart problems. Always consult your physician for a thorough evaluation.

How is Eisenmenger syndrome diagnosed?

A child or adolescent with a history of an atrial septal defect (ASD), ventricular septal defect (VSD), patent ductus arteriosus (PDA), or atrioventricular canal defect (AV canal) that has been unrepaired or repaired after one year of age is at risk for developing Eisenmenger syndrome.

The physician may note a change or increase in intensity of a cardiac murmur (a blowing or rasping sound heard while listening to the heart that may or may not indicate problems within the heart or circulatory system) during a routine physical examination. Complaints of change in exercise tolerance or any associated shortness of breath, chest pain, or palpitations, especially with activity, should be reported to the physician for further investigation.

The physician will perform a physical examination, listening to the heart and lungs, and make other observations that help in the diagnosis. Other tests that may be performed to help with the diagnosis include the following:

blood tests - tests to evaluate for an elevated red blood cell count (erythrocytosis) and anemia.

chest x-ray - a diagnostic test which uses invisible X-ray energy beams to produce images of internal tissues, bones, and organs onto film. There may be changes that take place in the lungs due to extra blood flow that can be seen on an x-ray.

electrocardiogram (ECG or EKG) - a test that records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias), and detects heart muscle stress.

echocardiogram (echo) - a procedure that evaluates the structure and function of the heart by using sound waves recorded on an electronic sensor that produce a moving picture of the heart and heart valves. An echo can show the pattern of blood flow through the PDA, and determine how large the opening is, as well as how much blood is passing through it.

cardiac catheterization - a cardiac catheterization is an invasive procedure that gives very detailed information about the structures inside the heart. Under sedation, a small, thin, flexible tube (catheter) is inserted into a blood vessel in the groin, and guided to the inside of the heart. Right Heart Cath: pressure and oxygen measurements are taken in the four chambers of the heart, as well as the pulmonary artery and aorta. Left Heart Cath: contrast dye may also be injected to more clearly visualize the blood flow and structures inside the heart.
magnetic resonance imaging (MRI) - a diagnostic procedure that uses a combination of large magnets, radiofrequencies, and a computer to produce detailed images of organs and structures within the body. MRI may be used to aid in estimating pulmonary artery pressures in the lungs and to clarify any blood shunting.

Treatment for Eisenmenger syndrome:

Specific treatment for Eisenmenger syndrome will be determined by your physician based on:

age, overall health, and medical history
rate of progression and extent of the disease
tolerance for specific medications, procedures, or therapies
expectations for the course of the disease
personal opinion or preference

The goals of treatment for Eisenmenger syndrome are aimed at decreasing the pulmonary artery pressure, improving oxygenation, and decreasing degree of cyanosis and erythrocytosis. Treatment methods may include, but are not limited to, the following:

medical treatment
Medical treatment for Eisenmenger syndrome is based on symptoms. Types of medical treatments include:

medications
Medications that help to decrease pulmonary hypertension may be prescribed. These medications include calcium channel blockers, prostacyclin, and endothelin receptor antagonists, and work to dilate blood vessels which helps to lower the blood pressure in the lungs. If right heart failure develops, diuretics (water pills) may be prescribed to help decrease blood volume.

oxygen
Supplemental oxygen may be used during sleep periods or while resting. Use of oxygen may progress to continuous use for symptom relief.

phlebotomy
Phlebotomy (removal of blood) should not be done frequently, but may be recommended when erythrocytosis causes hyperviscosity (extreme thickness) of the blood. The volume of the blood removed is replaced with intravenous (IV) saline solution to thin the blood. Phlebotomy is generally done only when symptoms are severe and/or the hematocrit (the percentage of blood that is made up of red blood cells) becomes extremely elevated.

other treatments
Eisenmenger syndrome that develops as a result of a congenital heart defect that was never repaired is generally not treated by repairing the original defect, as it would increase the workload on the right ventricle and lead to a poor outcome. Lung transplantation or heart-lung transplantation may be performed when other treatments are no longer effective.

Long-term outlook with Eisenmenger syndrome:

Some individuals with Eisenmenger syndrome who have no other health complications may live into middle adulthood, and a few may survive into the fifth or sixth decade of life.

Considerations related to Eisenmenger syndrome include, but are not limited to, the following:

Pregnancy is not recommended for females of child-bearing age with Eisenmenger syndrome. Pregnancy may pose a high risk of death for the mother as well as complications for the fetus due to effects of low oxygen levels in the blood.

Any anesthesia and surgery is considered high risk and should be carefully planned. Collaboration with a cardiac specialist is recommended.

Air travel and high altitude exposure requires adequate hydration (fluid intake) and supplemental oxygen to prevent complications.

Severe headache, dizziness, syncope (fainting), or changes in level of consciousness should be taken seriously and evaluated emergently.

Smoking and alcohol intake are not recommended.

Coughing should be controlled or prevented with a strong suppressant medication to prevent risk of pulmonary hemorrhage (bleeding from the lungs).

Flu shots are recommended annually, and pneumococcal vaccine should be received according to the physician's recommendation.

Consult your physician regarding the specific long-term outlook for your child, teen, or young adult with Eisenmenger Syndrome..

Sunday, November 06, 2011

Oxygen

Oxygen is something that some pulmonary hypertension patients may need. Some patients need it more than others, some may only need it at night, and some don't even need it at all. I am one of those who was told to use it at all hours of the day, despite the fact that my oxygen saturation levels (sats) never get to 90%. Normal oxygen sats are from 95-100%. For me, because I have Eisenmenger's, it's pretty much my norm to be hovering in the high 70 to mid-80% range when at rest. When I exercise or vacuum or something more physical, I dip into the low 60s, sometimes even into the high 50% range. Yes, that would be deadly for any normal person, but I am not normal!! lol

I found out this past May that there isn't any proof that oxygen really helps Eisenmenger patients. I can actually understand why that is, since no matter how much oxygen I'm on, I will never get my sats into the normal range, and that especially goes for when I'm physically active. I thought hearing this news might mean that perhaps I could eventually wean myself off of oxygen. I've been wearing it for the past 10 years, though, so I was a bit leery. Now, I have always been able to take the oxygen off for awhile (and by awhile, I mean several hours) before I felt the need to put it back on. I've done it so many times, and I've never had major problems. But to go without it for a day? Hmmm, I'm not so sure about that!

So, backtrack to Friday afternoon around 3pm. I had come home after being out for a bit, and the oxygen guy was still at my house because his van wouldn't start. After I brought in my bags, I went out to say hi to him, and chatted for a few before he took off (someone had come to give him a jump by then). I went back in the house and filled the water attachments on the two large liquid oxygen tanks since they were empty, put the tubing on, and went about the rest of my day. Yesterday morning, I had a little bit of chest pain, which is unusual for me, and I tried to figure out what the heck I did to make my chest hurt. A few times, I've lifted something too heavy or did something too strenuous so that I ended up with pain the next day or two. I tried a heating pad for awhile, which didn't seem to help too much. But then I drove out to K.'s house in the afternoon around 2:30, and got back home after 10:30. I felt fine the whole time I was with him, but on the drive home, I could feel the pain again. So after taking a bath, I went to put the tubing back on. Now whenever I leave the house, or even take the oxygen off at home for a little while, I never turn the two tanks off. I just leave them running. So when I went to put the tubing back on, I realized no oxygen was coming out of the nose parts. I knew I hadn't turn the tanks off before I left for K.'s house. And all of a sudden, it dawned on me that I had never turned the tanks on from Friday after the oxygen guy left!!! I wore a cannula as decoration for 24 hours, with no oxygen!!! WHAT THE HECK IS WRONG WITH ME????? No wonder I had chest pain!! DUH!!!! Soooooooo, I went over to the tanks and turned them on to a little bit of a higher number than I'm used to, and since I've had it on since last night, my chest pain is much better!!

So the answer to whether or not I can eventually wean myself off of oxygen? I would have to say that is a no. It stinks to know that, and I kind of figured that I wouldn't be able to, but now I know for sure! I think what I need to do is start writing myself big notes to turn the oxygen on here and at rehab, since in the last several months there have been way too many instances of me wearing tubing without any oxygen coming out of it!! lol

Diagnosis

Pulmonary hypertension may be suspected after having an echo, however, this is not a definite way to diagnosis PH. A true diagnosis of PH is done by having a right heart catherization (RHC). During this procedure, an accurate measure of the pressures in the lungs are taken to determine whether or not someone has PH.

Thursday, November 03, 2011

Cool Dream!

On Tuesday, K. told me that he saw a buck crossing near the area where he was getting his truck looked at. I was a little sad because I was hoping to see a buck when we walked along the trail a couple Saturdays ago. So we made plans to either try going Tuesday night, or maybe Wednesday, and also maybe this Saturday if the weather wasn't too bad. So Tuesday night, I had a dream:

K. and I were walking along a trail, and K. went ahead of me to see if he could find a shortcut. I stood waiting for him and looking around, when suddenly I heard a noise behind me. I turned slowly, and there standing so close was a huge buck! I tried not to gasp since I didn't want to scare it away, but I definitely dropped my jaw in shock. And instead of backing away slowly, I just reached out my hand. The buck moved a little closer and allowed me to pet it. I PET A BUCK!! Now, I know in real life you can't do that, but this was a very cool dream!! So, I'm standing there petting this enormous buck when K. comes back to find me hanging out with a buck! He was completely shocked himself! And then, I woke up.

Yesterday, I drove to K.'s to go for a short walk along the trails again. While we did see a doe and her fawn rather close, and 7 other deer, we didn't see a buck. I thought it was funny, too, that K. did go up a hill that was sort of a trail to see where it led, and I was listening for anything around me in case my dream came true!! Sadly, it didn't! Maybe we'll try for Saturday again, and hope for the best!

Abbreviations

PH = pulmonary hypertension, a general term used to describe PH.

PAH = pulmonary arterial hypertension, which means the right side of the heart is affected. PAH can be treated by 9 currently available FDA-approved PH meds.

PVH = pulmonary venous hypertension, which means the left side of the heart is affected. Unfortunately, for PVH, many of the treatments available for PAH cannot be used to treat symptoms. These meds can actually worsen PVH patients.

Hope this isn't too confusing!!

Wednesday, November 02, 2011

Categories

Pulmonary hypertension can happen without any known cause, which is rather frustrating for those who are diagnosed this way. This is known as idiopathic pulmonary hypertension.

Pulmonary hypertension can be diagnosed secondary to a cause, like connective tissue diseases, congenital heart defects, chronic liver disease, HIV, drugs, and toxins. This is known as associated pulmonary hypertension.

Pulmonary hypertension can also be genetic, which means it can be inherited. This is known as heritable pulmonary hypertension.

Tuesday, November 01, 2011

It's November, And That Means......

....it's PH Awareness Month!! Once again I'm going to try blogging every day for PH Awareness. I hope I can do it, since I've been bad at blogging every day!!

Pulmonary hypertension is high blood pressure in the lungs. It is rare and it is incurable, and can be life-threatening if not treated.

Anyone can have pulmonary hypertension. It does not discriminate by age or race. However, it does occur more frequently in women of child-bearing age.

Pulmonary hypertension symptoms include shortness of breath, dizziness, and fatigue. Simple daily tasks can become very difficult with PH.

Pulmonary hypertension is not a contagious disease. Very often, people with PH do not even look sick. For this reason, it's often considered an "invisible" health problem.

Sunday, October 30, 2011

Clean Freak

I spent the majority of my time on Friday and Saturday cleaning much of my apartment. Oh, I did the dishes and cleaned the bathroom, and vacuumed, but I also did a major dusting in 2 of my rooms, the bedroom and the living room. I have to admit that I did so much dusting as a kid for weekly chores every Saturday that it doesn't cross my mind to dust that often here. In fact, I don't remember the last time I dusted. Which is BAD. And I'm sure it's not good for my lungs. So, I spent a lot of time cleaning things, and throwing things out. I have a hard time parting with stuff sometimes. I see something I've been holding onto for years (sometimes decades), and every time I do clean, I think, "Hmmm, I could still use that," or, "Oh, I remember this!" And then I'd put it back where it was sitting forever. So, I chucked out a ton of items yesterday including jewelry (that was beyond tarnished), some stuffed animals, lots of old candles, candle stands, and some other stuff I'm not remembering. lol It felt kinda nice just getting rid of it! I also put some of my CD holders with tons of burned CDs into the other room, so that eventually I can get rid of all of them. I think most of the music I had on the CDs are already on my computer or mp3 player, and I hardly use a CD player anymore, so it's not like I need them. I should try to figure out a fun project to use them for! Anyway, I felt really accomplished that I got all that cleaning out of the way, and maybe I'll now try to keep dusting to once a week? Maybe once every other week?? Hmmmm. Not too sure about that!!

Sunday, October 23, 2011

Unexpected Accomplishment

Yesterday, I went to a park that had a lot of different trails you could walk, and it was huge. Now normally, I'm not always a fan of walking. Treadmill, sure. Walking down the street,fine. Going for a very long walk, especially when the temperature isn't all that warm, ummm, no. And that is my automatic thought, nope, I can't do it. Well, my biggest motivation to at least try it out this time was K. lol After getting some hot drinks, we got to the park, and began walking along one of the trails he thought I'd be able to do. It was nice, I'd honestly never been on trails before. We eventually started seeing deer, which was cool! I mean, I've seen deer before, but mostly dead on the side of the road. That is not cool! We kept going and going, stopping every once in awhile when there was a bench along the way. I was enjoying myself, not minding the weather too much, and not feeling too badly or terribly short of breath. Shocking for me!!

The trail seemed to go on forever, an K was trying to get us back to where we had started. He seemed to be getting concerned that I wasn't ok, when I had said I don't usually walk this much. I had to keep telling him that I was doing surprisingly better than I thought I would have, and I was happy about that. I could still tell he didn't seem to satisfied with that answer. Now that was starting to make me feel bad! Every once in awhile I would still just stop to take a moment, and then continue on again, but all in all, it was a good walk for me. And I'm incredibly thankful. I even thanked K. I am usually so doubtful in the things that I think I definitely can't do, and I think I need to just go and try them out again first before I say no. If it hadn't been for K, I really wouldn't know that I can go for long walks, as long as I pace myself. Right now, I'm feeling healthy enough to do that. Yesterday was proof! All my working out at rehab and recently on my treadmill at home seem to be doing something for me. And I'm pretty darn proud of myself for trying and succeeding!!

Thursday, October 20, 2011

One Less Pill To Swallow

A couple months ago, I emailed my PH doctor about possibly getting off of Coumadin, which is a blood thinner. I've been on it for about 10 miserable years. I was put on it the first trip I made to the Cleveland Clinic, and I just really have not enjoyed being on it. So I thought I would just ask about the possibility of being on a daily baby aspirin instead. I asked my PH doctor to consult my cardiologist. And then I waited and waited for an answer.

Several weeks later, I emailed my PH doc again about another question. I just wanted to know, for the heck of it, if I'd be able to get a tattoo. I sent the email off, and again I waited.

This time, the wait wasn't as long. Within a couple days, my doc emailed back. He said he hadn't even answered my first email (duh!). He said first of all, that he had consulted with my cardiologist, and they both were not sure I needed to be on Coumadin. My mouth dropped, and quite honestly, I started shaking with happiness!! WHAT?? I was just so excited!! Then he continued on to say that secondly, I could get a tattoo as long as I was off Coumadin, and I go to a reputable place (ok, duh again, like I'm gonna go to someone in a back alley. lol). I was a bit surprised by that answer, but found it kinda cool (of course, I need to actually work up the nerve to get one, so who knows if I ever will lol)! So after my initial reactions, I realized I needed to ask for a reasoning behind why it is they think I probably shouldn't be on Coumadin in the first place. My doc wrote back saying there is no hard evidence out there saying that Coumadin works any better on Eisenmenger patients than a daily aspirin. I decided to research articles regarding this, and he was right. I had a hard time finding stuff that definitely favored one treatment over another. I also asked other Eisenmenger patients what kind of blood thinning agent they were on, if any. Results were mixed. Some were on Coumadin. Some were on regular strength aspirin, some were on a baby dose. And a few were on both. Totally not what I would want to do!! So I wrote back to my PH doc and told him that I would definitely like to try an aspirin a day, but could he please let me know what dose to go on. And then again, I continued to wait!

Last week, after finding out my cholesterol was up again, and having to increase my cholesterol med (UGH), I wrote back to my PH doc yet again to ask about the aspirin dose. I told him I wanted to get off Coumadin so I could eat more salads and lots of spinach and try other things to lower my cholesterol that I couldn't try before because of the dumb Coumadin! He finally emailed me back, and said I could do the full strength aspirin (which is 325mg). Yay!! So last Wednesday, I bought a 130 count bottle of Bufferin aspirin! I started taking it that afternoon. However, by Monday morning, I got another email from my PH doc. He told me my cardiologist wants me to take baby aspirin. UGH! After I had just bought that big bottle of the other one!! I wrote him back saying that I feel like I'm stockpiling blood thinning agents, between the leftover Coumadin and now all that aspirin! LOL! Oh well, I went out and bought a smaller bottle of aspirin to hold me over until I can go back to Walmart for more. I'm just very relieved that I won't be needing constant bloodwork anymore, which was happening more often than not while on Coumadin if my numbers were off. I don't need to watch what I'm eating anymore, either!! Whoooo hooo!!

Tuesday, October 18, 2011

Where Are My Posts? Part Deux

Yes, I'm slacking again. I would like to talk about a certain topic I've had a hard time with for a long time while living with PH, and that would be dating. Now I'm not a newbie at it, I have dated, and I have had a boyfriend, but it was years ago. Too many years ago. It was also before I had to wear oxygen all the time, and before I had to start taking major meds to treat PH. After all that happened, it was really hard to find someone who wanted to deal with everything. One person I found and truly loved was Euan, but he also had major health issues going on, and so it made it so much easier for us to relate and eventually fall for each other. And sadly now he is gone.

I've been on several dating websites, but most recently I've been on one that is totally free. I purposely put pictures up with me wearing oxygen, because well, that's the truth. I figure if someone doesn't like it, they don't have to say anything. Why lie and have someone find out later that I actually do wear it? Show up to a date and "surprise!" I wear oxygen??? I'd be a bit upset if someone did that to me! Anyway, I've had plenty of men send me messages asking me why I'm wearing it, if I have such-and-such disease, and even one who told me I need to take the oxygen off (idiot). Some men I've gotten back to, and they've been inquisitive, and some I've never heard from again. I never actually even got to the point where I'd want to meet any of these guys, mainly because many times, they'd stop writing. Well, ok. Thanks a lot! So it's always been a bit discouraging, and even though I always blow it off as if I don't really care to have someone in my life, lately it's not been my true feelings. I do want to have a friendship with a man that turns into a great romance, or whatnot. I just don't want to be alone, even though, if it had to turn out that way, I'd just accept it. What other choice do I really have?

Well, as unexpectedly as it's been, someone has come into my life, and in a matter of a month, I've gone from no dates to a bunch of dates. It's been fun, overwhelming, and unbelieveable at the same time! I'm trying to have to just go with it, but always in the back of my head is a feeling that something will happen and things will just end. I guess I've had too much of that in the past. This man actually admitted to me at one point that he's never dated someone with major health issues before, and that he's a pretty active guy. He just wanted to be honest. But he keeps asking me to do things with him, so I take that as a good sign that maybe he's willing to give this a try. It's still too early to tell what will happen, but I have to admit that I am pretty happy right now!

Sunday, October 09, 2011

Where Are My Posts?

I have been so neglectful in posting. Most of the time when I want to write, it's so late that I decide to maybe wait until the next day to do it. And then of course, I have so much to write about now that it would take me all night. lol

My sister got married on Sept. 24th, and it was a pretty perfect day all around for her and her new husband. Nothing really went wrong or haywire, and the weather was just so beautiful! I didn't have to worry about carrying around a sweater, since it ended up being sunny and warm. The ceremony was wonderful, there were lots of people in the church. The family pictures were taken in a very beautiful building in downtown Niagara Falls called The Giacomo. Bridal party pictures were taken at The Giacomo as well as the Niagara Falls state park. By the time we got to the reception, my feet were killing me from walking around so much that I took my shoes off and didn't put my replacement shoes on until after dinner! There were around 240 guests celebrating the wedding, and it all just went by in one big blur. Dancing was so much fun, and then before I knew it, the night was wrapping up. The day was just so fast, but I'm glad that it went well for Joan and Rick. I'm sure they had a very good time on their special day!

Several days after everything started calming down, I ended up getting sick. It wasn't a very bad cold, but enough to be really annoying. I was put on an antibiotic, thankfully, and finally just finished it up yesterday. The cold is gone now! I hope I don't have to worry about another one any time soon! I did get my flu shot and an updated pneumonia vaccine. One on each arm, on the same day. OUCH!!

I guess this will have to be good for now, I'm tired and achy and I need to get to bed! lol I am doing ok, just a bit too busy (or forgetful) to update! I'll try to do it more often!!

Thursday, October 06, 2011

Mittens | Vote for the Next Pet Star - Photo Contest | Show Us Your Pet's Healthy Smile

Mittens | Vote for the Next Pet Star - Photo Contest | Show Us Your Pet's Healthy Smile

I have entered Mittens into a contest!! He needs votes! lol The contest ends on Oct. 21, and you can vote once a day. He could win a year of cat treats, among other things. I'm sure he'd only care about the cat treats! LOL If you could click and vote for him, he would much appreciate it!! Thanks!! :)

Friday, September 23, 2011

Wedding Weekend


My youngest sister gets married tomorrow! Last night was the rehearsal and dinner. My sisters and I went out for a drink afterward, and had a nice time together. This afternoon I'm going with Joan to get a pedicure. Tonight's a dinner with much of my family at my parents' house. And tomorrow is the big event! I sure hope I have the energy for everything! I might need several days to recover!

Saturday, September 17, 2011

Happy Birthday To Me!! :)

Today was my 36th birthday! I planned on it being pretty low key, and it was until Mandy asked if we'd want to go bowling after having cake at her house! I haven't bowled in a few years, and I thought it would be rather entertaining to watch the kids play, so I said sure thing! I left the house around 5:30 to pick up a Carvel ice cream cake at Wegman's. I got an Oreo one, which I thought would be the right size for 7 people, and there's a lot leftover. It was tasty! We headed to the bowling alley afterward, and got ready to play one game. The kids got to play bumper bowling. I think my score would've been a heck of alot better if I used it, too! LOL The kids were so funny to watch! H would dance to the music playing while trying to throw the ball down the lane. And S would just run up to the lane and let the ball go flying! The finished their game a lot quicker than we did. We kept having issues with the ball getting stuck in the gutter, and then our turns all got messed up. Eventually we finished. I think my score was 73. Terrible!!! lol But it was a lot of fun! I'm glad we ended up doing something together! My day was made even more special by all the wonderful comments left on my Facebook page. I had close to 200!! Wow!! It just made me feel so happy to know so many cared!! So, all in all, I think this year's birthday was a great one, and I look forward to what this year will bring for me until I have to celebrate year #37. :)

Friday, September 16, 2011

A Sweet Sign?

I was sitting in my kitchen earlier today, just playing around on the laptop, when all of a sudden, I heard a music box go off. It was very brief, only maybe like 10 seconds, but enough to make me completely stop what I was doing and stare toward my hallway in shock. I didn't recall having a music box! So I got up and walked near the bedroom, trying to think what I might have in there that plays music. Nothing. I went down the hallway and stood in the entrance to the living room. There across the room sat the snow globe I received from Euan the first time we ever met in person. I went over to it, and turned it upside down, and gave the winding part a turn. It played the exact same music that I heard just minutes before. I haven't touched the snow globe in about 8 months. There was no rhyme or reason for it to go off. All I could think of was that yesterday was Euan's birthday, and tomorrow is mine. Perhaps he wanted to let me know that he was still around in spirit, when sometimes I wonder if he is really there. I immediately got teary eyed, and put down the snow globe, and just tried to be happy in knowing that he gave me a sign that he was thinking of me. I miss him dearly, but I guess he truly still stops by once in awhile!

Tuesday, September 13, 2011

About Time!

In the mail today, I FINALLY got the letter stating that my Medicaid spend down was paid for the month of September. It's about darn time!! I will be sending my check for October a heck of a lot sooner, probably by the end of this week. Talk about stressing me out. I sure hope this doesn't happen every month!!

I also got a letter stating that my food stamps will be increased again next month. I guess they really want to make sure I'm eating. lol Can't complain about that, though!!

I got pretty sunburned on Saturday from being out in the sun for at least 4 hours at the air show. I admit I forgot to put suntan lotion on, but I used the spray my sister had for the kids twice. The sun won out, though. My arms would look a heck of a lot better if I hadn't been wearing a regular tshirt. Now it looks like I have a farmer's tan, which will NOT look at all good with my sleeveless dress for the wedding!! Today I tried sitting in the sun for about an hour, seeing if I could even things out a little. Nope. I'm hoping my arms will fade so I won't look so stupid. I'll see by the end of the week if it looks any better, or I'll be buying some sunless tanning lotion to hopefully make things look much better!!

Saturday, September 10, 2011

The Air Show!

I had one amazing day today at the Air Show! We got onto the air base after 9am, and explored all the many different air craft that was around. It was really neat! The air show started around 11am with an extremely moving tribute to all the first responders of 9/11. It was rather emotional, and very well done. Then there was about two hours of incredible performances by a variety of planes and jets! I was most impressed by the B2 bomber (stealth bomber), which is the triangle-looking jet pictured down below, and also by the Thunderbirds! They were the main attraction, and the crowd love them!! They are the last several pictures below. Hope you enjoy the pictures!! I had over 100 of them, but I didn't think I should put all of them up in my blog! lol I am just so glad I went today, it was a great day!!




















video

Friday, September 09, 2011

September Weekends

This week seemed to go by quickly, probably because Monday was Labor Day. The weather wasn't all that great, reminding me miserably that winter will be here sooner than anyone wants. I went out to lunch on Wednesday with Renee and Dee, and it was a nice time! We enjoyed our meals at Michael's Restaurant, and then talked forever after. Then we got back to my place and talked forever again! It's always so nice to have such good friends to share so many things with. I'm glad we were able to hang out for awhile!

Thursday, Mandy and I went to Wegman's for some sushi, since it was her first day of having no kids all day. Her son was all dressed and ready for school, with his backpack on, at 7am. lol A little bit too early!! I'm so glad he's enthusiastic about going, though! I hope both he and his sister have a great year!

Tomorrow I'm going to the Air Show at the base for the first time ever! I've always heard the air shows going on when I was growing up, but we just never went. Many of the jets were practicing today, and some of them sounded like they were going to crash right into the house. They were LOUD!! I'm excited to be going tomorrow, but my sister and her family are leaving at 8am since it's going to be jam packed, so I really must get to bed now!!! lol

Wednesday, September 07, 2011

Anytime Now!!

My financial state gets turned upside down last month. I do all of these things to crunch numbers, lower bills, make arrangements for help, and within about a week, I'm somehow able to pay for my bills again, including the medical insurance.

And yet, here I am, still waiting on the good old state of NY to actually tell me my first payment to them was accepted, and that I will have my appts and such covered for September. Come on!!! I bend over backwards to make sure I'm not screwed, and yet, it doesn't seem to matter!!

My caseworker did tell me on Friday that I should just tell whoever I see that I did pay for my Medicaid spenddown for September so in case Medicaid doesn't cover my 20%, they can submit the bill over again. How friggin annoying! I guess that's what I'll be telling the lab tomorrow when I go for bloodwork. I just don't want to end up with bills for anything, because I DID what I was supposed to do!! ARGH!!!

Friday, September 02, 2011

Celebrating Your Special Day

I got my first birthday card today, even though it's not until the 17th. It came from the place I had asked to help me with payments for my Medicaid spenddown, and I was surprised to get it. It was a very nice card, and I just wanted to share what it says on the inside:

The Wonderful Thing
About Your Birthday

Is celebrating footprints from afar
the magical miles of memories
that has made you who you are.
Steps that at times seem faded
and sometimes full of fear
your birthday is a reminder
that you did persevere.
So as you celebrate your life
reflect upon it with a smile
because the path that created you
was worth every single mile.
Gifts that can't be sent
for they will be with you all year long
as you make your next footprint.
*APJ*

I admit that I got a little teary eyed reading the card, because the words ring so true. While some people hate the fact they are gaining years and getting older, I relish it. My parents were told they didn't know how long I might live, so I thank God for every year I get, whether it's one of the best years ever, or one full of difficult obstacles I must overcome. I am so glad to be celebrating another year very soon!! And I always pray for so many more!!

September Days

It's just barely into the 2nd day of September, and I'm already missing the summer. Summer hasn't officially ended by calendar standards, yet to me, whenever September hits, I immediately think fall. Which then immediately reminds me that the dreaded winter is coming soon. Booooo.

Tonight I did something I've never ever done before. I went to the movies. BY MYSELF. I checked to see if the final Harry Potter movie would still be playing tomorrow night (well, really waaaay later tonight, since it is almost 1am on Sept. 2nd), and it wasn't. OH NO!! I did NOT want to be seeing this final installment of the series on a much smaller screen at the cheap theater, and I definitely did not want to end up seeing this last movie just on my tv. There was only one time it was playing, and that was 9:40pm. So, I decided to just go on my own! And I have to say, I really enjoyed it! I felt so daring. LOL! I liked the movie, and I won't be giving away any details for those who may not have seen it yet, but let me just say this. I LOVE Professor Snape. I'm actually more sad to see that character gone than Harry Potter himself. Yes, I'm nuts!

This coming weekend is the last big shindig of the summer, also known as Labor Day weekend. Many people have off on Monday, and the last barbecues and cookouts will most likely be happening. I don't really have plans for it yet. My family is usually last minute at things like these. Maybe we'll do something? Maybe we won't. Considering I don't work, it doesn't really mean all that much to me to have a day off. I guess I don't appreciate it as much as some people do!

School begins here on Tuesday, and for my niece that means her adventure in 1st grade begins! Thursday is the start of full day preschool for my nephew. It also means total freedom for Mandy during the day!!! I think Mandy and I are going to breakfast once she drops the kids off, which will be nice! I know Mandy is looking forward to being able to do more stuff during the day while the kids are in school. I'm hoping maybe she'll be able to create more beautiful projects in her kiln!

I had a nice chat with a phriend this afternoon about working. She told me how she went back to school for a year to be a medical coder, and that she had gotten a job at a hospital full time. Then she was going to move, and she figured she'd get a job in that location, when the place she was working for offered to let her keep her job and do it at home. She agreed, only if she could work part time since full time was actually wearing her down. They said that would be fine, so she works 30 hours a week from home. She suggested going to my local vocational rehabilitation department, which I had been considering. They can try to help someone on disability either get retrained for something else, or find a job. I still would love to be able to do something on the computer and stay in my own house while making money. I have a lot more researching and considering to do, and hopefully something will come up!

I called once again this afternoon about my tongue. This morning when I had breakfast I could barely taste my food. That's never happened before. My doctor would like me to see an ear/nose/throat guy. I actually do go to one, and will see him at the beginning of October. Do I wait until then? What the heck? I've been dealing with this for so long, what's another month? In the meantime, while waiting for the doctor to call me back, I took 2 acidophilus capsules that I've been just swallowing, and broke them open. I poured the stuff inside into a cup, and mixed a very small amount of water with it to create a paste. Then I put some of the paste stuff onto my tongue and just kept it there for about 5 minutes. I rinsed my mouth out after, and repeated. I did the same thing again after dinner. Currently, my tongue feels funny, but it's not burning. HMMMMM. I think for at least the weekend I will keep doing this several times a day, and see what happens. I'm also just going to stop the cephalexin completely. I really think it's the root of everything, and well, I guess despite how it helps my skin, it's not worth losing taste in my mouth. Especially when I want to taste chocolate!!

I guess I'll stop this random blog post of topics to get ready for bed and call it a night!!

Monday, August 29, 2011

Changes

Only a couple more days of August are left, and most nights are already feeling as if it's fall. I'm really sad that summer is ending. I mostly don't like the thought of it disappearing for another 9 months because for those months, I will be mostly cold!!! I know that soon I will be putting away my summer clothes and dragging out the fall/winter ones. I'll have to encase my windows in plastic to keep winter drafts from coming into the house. I need to figure out ways to keep my place warmer without blasting the heat (which I never do). I really need to find out how to keep my feet and legs warmer, because they are the parts of my body that just get coldest the fastest. Long underwear and 2 or 3 pairs of socks and slippers don't seem to be cutting it with me!! Before long, it'll also be bath season!! If only there was a way to stay in the tub all day so that I wouldn't be cold!

The weather changes are bringing me headaches almost every day, literally. Most of the time I don't take anything for them, but sometimes they are so bad that I must. Sunday I had a migraine all day. But usually I just function with them. Until the weather gets pretty much cold and stays that way, I'll be dealing with the headaches as best I can!

I do have to say that PH-wise, besides a little increased shortness of breath, I'm doing pretty good. The weather usually effects that, too, but so far I've been ok. I'm happy about that, it's one less thing I need to deal with right now!

September will be a busy month. I have some appts scheduled, including the local PH doctor. The annual Peach Festival is coming up, which I love to go wander! My birthday is in the middle of the month, and then the weekend after is Joan's wedding! So there is lots going on for the month, and I'm sure like everything else, it'll fly by quickly!

Saturday, August 27, 2011

Painting Project



I had purchased 2 paint by numbers in the spring to work on during the summer, since I didn't think I'd be so busy. Well, I was busy! So I didn't start the first one until the end of July. I worked on it mostly outside in the backyard on my new little table set. I finally finished it last night, and I love it! I plan on getting a frame and putting it in my kitchen. I started the other painting tonight, but that one is insane! It's so much harder than the other one, and will take much more time! I do love painting, though! I just wish I had a natural talent at it rather than relying on numbers!

Tuesday, August 23, 2011

What's Shakin?

I was at my stove early this afternoon making some grits for lunch when my fridge started making a horrible noise. Now, all summer my fridge has been making noises off and on, sometimes sounding like it's thawing out, but when I check it, everything is fine. But this noise was totally different, and it almost seemed like the fridge was moving a little bit. I stared at it and said out loud, "What the hell is wrong with my fridge now??" I glanced in the computer room and Mittens was on the rug, frozen in the middle of cleaning, and staring at me wide eyed. Several seconds later, the fridge stopped making any noise. So then I thought, oh great, it broke! But when I opened it up, everything seemed fine. Hmmm, oh well. Back to cooking!

Minutes passed by, and something in my mind said EARTHQUAKE. And 10 minutes after that, I got an alert on my phone saying that an earthquake had indeed happened, but in Virginia! Whoa! I can't believe it could be felt way up here, although, had I not been standing in the kitchen, I may not have known it even happened! This is the second time in my life that I have felt an earthquake, which is so odd since this part of the country doesn't really get them. The first time I felt one was maybe 9 years ago, and I was sleeping but my bed started shaking and I woke up. I thought a huge truck had hit a pothole on the corner of my street near my house (which wouldn't be too surprising!). It was only a little while later that I read about an earthquake and that many people all over had felt it. In a way it's kinda cool, but I don't think I would really like to feel anything stronger than that!! I'm glad that no one was really hurt in this one, and the damage isn't anything terrible!

Monday, August 22, 2011

FINALLY!

I got up at 9am this morning and proceeded to make several phone calls that I realized I needed to make today. The first was the Medicaid office in Lockport, who told me I had to call my caseworker in Niagara Falls to find out the information I need so I can send in a check to pay for Medicaid for September. Give me a break!!! I left a message for my caseworker, and guess what?? SHE NEVER CALLED ME!! I did, however, finally get the paperwork in the mail this afternoon!! I opened it up, read everything, wrote a check, and flew to the post office to mail it! I sure hope that it is enough time to get there, or else I'm going to be royally pissed off!! I swear, I accept this stupid changes, and I still get screwed over because the dumb state is late sending me the info. At least it feels that way!!

I did go out to lunch today with my good friend, Erin, and her daughter. We went down to The Silo, which was rather nice! Today felt like fall, which was not nice. Not for me, anyway. lol But it was sunny enough to be comfortable, and I was wearing jeans and a sweater. We ate and talked for awhile before finally heading back home!

I have to get up early tomorrow to put stuff on my porch for the Vietnam Veterans of America group. They sent mail a few weeks ago asking for donations, and they provided a bag. Well, I'm going to be putting out 5. I had a lot of stuff to just give away, and my one closet is so much happier!!!

My mom has her other eye surgery way too bright and early tomorrow, so I'm praying all goes well again!! Her right eye is good, and I'm pretty sure she's happy she's getting this done!! I'm sure I'll be stopping over again after rehab like I did last week to make sure she's ok. I'm also pretty sure she'll probably sleep all afternoon like she did last week. I can't blame her, she had to get up at 4am!! YUCK!!

Saturday, August 20, 2011

Awesome Groom!

I saw this on Yahoo! earlier today, and it made me cry. And I'm not a big cryer usually!! Sure wish I could find someone this thoughtful and sweet!!

Bill Shrinkage

I spent Thursday afternoon on the phone with Verizon and Time Warner. Verizon changed my phone plan back down to 450 minutes (UGH), and also completely blocked texting for me. I am thankful for a smartphone that allows all sorts of apps, because I found a free texting app that actually works pretty decently. So, even if I didn't have to crunch my bills, I would have gotten rid of texting anyway after finding this app! In total, I'll be saving about $30 on my phone, which is good!

A friend had told me that Time Warner had a cable modem package called Road Runner Lite. He said he used it for awhile when he had to crunch bills. So I asked the service rep about it when I called, and she said that they never sign people up on that package if they are using wireless service because we would call and complain about how terribly slow it is. What she ended up offering me was an upgrade to what I already had, but for almost $15 less a month. Ooooook, sign me up!! Even though it's only for a year, well heck, it's a year and I'll call them back next year to see what else they can offer me to keep my bills lowered!

I was hoping my caseworker would return my Thursday afternoon call, but she did what I figured she would do: called me the next morning while I was still in bed. I got my glasses on and my robe before I answered the phone! I wanted to know exactly what to do with these green slips I had received, and if the amount I had to pay was really $41 since I had yet to get something in the mail stating what was happening. I need to make sure I send out payments 10 days before the month I need the spenddown, so in order to pay for September, I need to send a check out by Monday at the latest!!

***BREAKING NEWS*** I decided to check my mail as I was typing this, and saw a letter from Social Services. However, it still does NOT explain what I owe!! For crying out loud!!! What the heck????? Guess I need to call yet again on Monday to find out what to do about this. So darn frsutrating!!!

Anyway, I think I have it down to just being able to pay my bills, and nothing much leftover for anything else. I'm still trying to figure that part out. I can either try to do work from home jobs, or maybe I might actually make a jewelry business. Still so much to figure out, but at least I know I won't be homeless, I can still talk to people on the phone and the computer, and I will still have food. I should be happy with that, right??

Thursday, August 18, 2011

Guess What Came In The Mail?

I knew that after typing about not receiving information about the Medicaid changes yet that I would probably get it today. Sure enough, when I checked the mailbox, there it was. I don't understand exactly what I need to do, so tomorrow I will be calling my caseworker, and hope to heck she won't take another week to get back to me. Sigh.

Wednesday, August 17, 2011

I See You

My mom had her first cataract surgery yesterday, on her right eye. My parents had to get up at 4am to make sure they were at the place by 5:30. Why in the world do they start those surgeries so darn early???? I'm very relieved that I didn't have to bring her just because I'd be a walking zombie for a few days!!! Everything went just fine, though! I went over to the house after rehab and had some lunch, helped my mom get some things for her lunch, and then she went to lay down in her bedroom. I stayed for a couple hours doing updating on her computer, and I also washed the dishes before I went back home.

This morning my mom had to get the patch taken off, and when I called to see how she was doing, she told me how shocked she was that she could see so clearly! I'm really glad that she's able to see so good! So, I'm hoping next week's surgery goes just as well for her, so she can see almost perfectly with BOTH eyes!!

Waiting and Planning

I kind of took the weekend off from really stressing about my finances, and spent a great two days in Lewiston at the annual Art Festival. The festival is one of my favorite things in the summer! At least 100 artists set up booths with a wide variety of artistic ideas, everything from glasswork to paintings to jewelry to woodwork, etc, etc. That's just a whole bunch of talent gathering together!! This year, my sister Mandy actually had a booth!! She had her beautiful jewelry and glasswork, and she really did well with sales! I think she's already trying to plan some new ideas that she'll be able to include for next year if she's able to get a booth again. I'm so happy for her, and very proud that she could participate!!

Sunday evening I went to dinner with Joan, my cousin, Ryhan, and my Aunt Jane, who were both in town for a couple days. We went to Applebee's, and Ryhan asked a ton of questions about the wedding, and Joan moving to Canada, and where they were going on their honeymoon. I was very sad at her answer about the honeymoon: they are taking a 14-day cruise to Hawaii. :( I was hoping that 15 years of saving for Hawaii would at least make my dream of going there come true, but there's no way to really save for that now. Well, unless I can figure out a job I can handle that would allow me to pay for my bills and also save for stuff. I just wish I was able to go!!! Not sure if she can just stuff me in the luggage, I'm not that big!! lol Anyway, after dinner, we went to DeDee's for ice cream, and shared laughs outside on the patio. It was a nice way to end the weekend!

Here it is, Wednesday, and I still haven't gotten paperwork about this big change that's supposed to be happening. Of course, the mail hasn't come yet today. I just want to make sure this is really happening. I can't understand why I haven't gotten anything yet, my caseworker told me she would send it out to me so I'd get it this week. It would only take a day to get here!! I have also asked someone else I know who works in Social Services if she could find out any details, but her department is moving this week, so that might take some time, too. So, I'm kind of just waiting for proof as I make plans on how to readjust my finances. And, at the same time, I'm trying not to stress out!!

Friday, August 12, 2011

Surprise! You're In The Hole!

On Monday, I received a letter about my food stamps, and I knew something was wrong. According to the paperwork, I would be getting more money starting next month for food than I thought I should be getting. UGH, it got messed up again?? After reading the letter, the reasoning for the extra money was because I would be paying for Medicare Part B premiums. I knew this was wrong, because Medicaid pays for those premiums. So, I tried calling my case worker on Tuesday. Of course, I had to leave a message with her. Since I hadn't heard anything, this morning I just decided to write a note and send it to her in the mail. I got it all ready to go, and then got a call from her. Wow, surprise! I told her about the notice and what I thought was a mix-up, and she said that she would adjust everything and there would most likely be a change, which I totally expected. So, I went on about my afternoon, spending a couple hours painting outside while it rained around me (I was under the garage door).

I went inside to take Revatio and I got another phone call from Mrs. L. After explaining it several times to me, I realized I was getting really shitty news. It breaks down like this:

I get $944 a month in Social Security Disability (SSD).

The Medicare Part B premium is $115 a month, which used to be paid for by my Medicaid. However, now I will get this taken out of my SSD check every month, which means I only have $829 for my bills.

Also, if I want to keep Medicaid, which I MUST keep, I also need to write a check to NY for $41 a month so that I don't have to worry about things such as paying for oxygen and copays for doctors and tests that I need to have done. So, that leaves me $788 a month for all my bills, gas for the car, money to buy stuff I need (like hair care products, vitamins, Mittens' food and litter, etc etc). Isn't that lovely??

Now I'm sitting here trying to think of what other bills MUST be paid, like the rent, student loan, electricity, etc, and what bills are "frivolous." I guess that would be the internet and tv. What the hell am I supposed to do?? I was already struggling every month trying to figure out how to pay for everything, and now I'm $150 in the hole every month just for medical, which I obviously need. I did call a group called Caring Voice Coalition, which might be able to help me pay for the $41 a month. It's not a lot, but it's something, and if they are able to do it for me, I would be really thankful. In the meantime, I guess I can look for part time work and hope that it won't wear me down eventually. This really just sucks big time!!!!

Wednesday, August 10, 2011

Wide Awake

It's 1am here, and I feel wide awake. I had a bad headache after dinner, so I finally took an Excedrin for it around 8pm, which I knew would probably keep me up later than usual. Considering I was pretty tired almost all day, I find it ironic that now I can't sleep. Sigh.

Yesterday, I brought Shelby to the vet with mom. Shelby had her laser treatment, but I'm wondering how much it's really helping her. Her back leg keeps giving out often, and I feel bad. I don't know how much pain she's really in when that happens, but I'm hoping it's not a lot. No matter what, though, Shelby always has a cute little smile on her face. I think that makes it so hard to know what to do for her, because that face makes it seem like she's always happy!!

By the way, the sister kitties were gone. However, they had 2 more kitties in there! A long haired black kitty and a short haired orange kitty occupied the cage. When I went over to look at them, they were both sleeping together. The orange kitty had it's paws wrapped around the black kitty. It was just so adorable! Still can't have them, though!!

I had to bring my mom to her doctor's appt in the afternoon, but before we did that, we stopped at a jewelry store called Firth's to see about selling some gold. I brought in everything I had that looked gold, even though I knew only a few pieces were the real thing. Most of my rings were sapphires, but I did have one that was a heart-shaped oval. I had them take out the stones, and weigh the gold that was real, and I ended up with $62.40. Not too bad. I'm going to save the money, and whatever other money I can save up, to have a couple of custom rings made. I know it's going to cost a lot. I just hate gold jewelry, and didn't think it would be useful to hang onto the gold when I don't wear it. I am hoping I can get something made in either white gold or silver. I'll have to shop around to see which jewelry place can accomodate me!

Today was a rainy day, which we've needed, but it made me tired! I felt like sleeping in, but I got to take a shower and get ready for rehab. My exercise routine helped a little, but I still felt tired when I got home. Despite that, I did 2 loads of laundry, hosted chat, and made lunch before I finally took a nap around 3:30. The rest of the evening wasn't too bad, except for the headache!

It's started to storm here, so maybe I'll go lay in bed and listen to the rain. I'm sure that'll make me sleepy!!

Saturday, August 06, 2011

Finally, An Answer (Maybe??)

Thursday I was discussing this situation with my sister, and I brought up how I was wondering what the heck was still going on with my tongue. I told her I wasn't really sure now if it was the pill that was the culprit, considering it's been 2 months of not taking it, and I wanted to chop off my tongue on Tuesday b/c it was hurting so bad. I said I was looking up oral thrush again, and still, none of the pictures I saw really represented what my tongue looked like. However, when I stuck my tongue out at Mandy (no, not to be mean, just to show her!!), she said she thought I had it. Why? Well, she had 2 kids that had it when they were babies, and she remembered what it looked like. Sooo, when my nurse called me on Thursday afternoon, I told her what Mandy thought, but I did say I wasn't really totally sure. My nurse said she'd ask my doctor, and had called me back 10 minutes later saying my doctor wanted me to try Protonix, which I guess was for acid reflux. I was thinking to myself, huh?? I know that's not my problem! So I asked if I could just be checked for oral thrush first before taking this med, and my nurse put me on hold, and got back with me 2 minutes later with an appt to see my doctor on Friday morning at 11. Yes!!

I got to my appt, was brought back into the room, and eventually saw my doctor. She took a look at my tongue, and said that while I wasn't presenting the typical signs of oral thrush, that my tongue was definitely irritated a lot, and so she was going to treat me as if I had it. This meant an oral rinse, and she wanted me to do it for 2 weeks. So then she tried saying what else could possibly be going on, and she started bringing up acid reflux again, but I stopped her in mid-sentence. I reminded her that I have been on cephalexin for my acne for about 10 months, and she got this huge surprise look on her face and said, "DUH!!! Did I know that???" I said it should be in my chart, and she started apologizing for either missing that part or just forgetting that I was on this med. Now, part of me was like, no problem! But the more I think about it, why wasn't she paying more attention to that??? Anyway, she now totally felt that it was definitely the cephalexin causing the problem, which I had thought about several months ago. But after stopping it for a couple months, nothing got better, so I figured it was ok to take again. Argh!!! What is frustrating is that it IS helping the acne a lot, and I don't want to just stop taking it. So, she told me to call my dermo and ask for a lower dose of the medicine. I will do that on Monday since I didn't get a chance to call after I got home. Sooo, maybe with this rinse that I have to do, things will get better after 2 weeks??? I certainly hope so! It's been almost a year of dealing with mouth issues, and I'm honestly ready for something to be normal in my life again!!!

And the funniest part of the visit to my doctor was when she was leaving the room. She told me to tell "Dr. Mandy" that she was right!! Of course, I told Mandy later and she told me she'd send my doctor (who is also her doctor) her fee! LOL!

Sunday, July 31, 2011

July, Over And Out!

In 20 minutes, a new month begins. I can't believe how incredibly busy July has been. I remember during the winter, I kept trying to think of things to do to keep myself busy during the summer. I bought 2 paint-by-numbers so I could do them since I have not been working on jewelry much lately. I thought I'd have plenty of opportunities to do them, but I've only worked on one of them twice so far! August promises to be a bit less chaotic, so perhaps I'll be able to do more things around the house, and the paintings! I just don't like the fact that this summer is disappearing quickly!!

Saturday, July 30, 2011

Is This Thing On??

Here we are, a week later since my last post. I swear, I had very many good intentions on blogging this week, but then either something came up and I'd forget, or I'd just plain forget, or I would get ready to do it and figured I was too tired. Ugh. I think part of it is laziness, too! Anywho....

Sunday was Joan's last bridal shower in Canada, and it was nice. It was a cash shower, and there were no games involved, but we sure did eat. If what we had at the shower is any indication of what the reception's going to be like after the wedding, then I might as well start fasting now. Holy smokes, the food just seemed to keep coming! There was antipasto (antipasta??), which included lots of tomatoes and cheeses, ham, pasta salads, etc. Then bowls of pasta were brought out. After awhile, they brought out chicken covered with some kind of mushroom and bacon sauce, little potato puff things, and cooked green beans and carrots. And a salad. Everything was pretty good, although I didn't really enjoy the chicken, but I ate what I could anyway. Then everyone was told they could line up to get tons of baked goodies over in the one corner of the room. There were so many cookies it wasn't funny. This type of table will also be at the wedding. I am not a big fan of many Italian cookies, but there were a few I found tasty after Mandy went and brought us a plate to share. There was also the cake, which was very tasty! It was a vanilla cake with fresh strawberries, and the icing was so light, very good! After eating, Joan made a little speech thanking everyone for coming and for the support for her and Rick, and everyone started leaving after. We all did get prizes, we just didn't play names. Instead, they drew numbers from a bowl every time the course of food changed, and you could go to the back of the room and pick something. I started out with a 4-glass set, and then exchanged it with Mandy because I could really use some new measuring cups, which is what she picked out. So, it was a pretty calm shower compared to the one we had with our family the weekend before!

The rest of the week I spent driving. Between getting groceries, going to rehab, bringing my mom to a doctor appt, going to a few stores, and bringing Shelby to the vet, there was only one day where I had a break from being the taxi. That was Wednesday! On that day, I did a couple loads of laundry (which were both towels), and hung them up on the line outside. Then I took out my table set and painted my paint-by-number for a few hours. The weather was perfect, and it was very enjoyable to be out there! It was also relaxing!

I'm trying to enjoy my weekend without worrying about what's going on (or NOT going on) in Washington with the debt ceiling crap. So far, I haven't seen any positive Yes or NO's as to whether I (and millions of others) will be receiving our Social Security check if the debt ceiling isn't raised by midnight on August 2nd. The thought of not being able to pay the majority of my bills freaks me out a little. Ok, a lot. I know that I wouldn't be the only person in the same boat, though. I think the whole thing sucks, though. NO politician is safe in the next election after this shit is done!!

Ok, I'm off to try the jambalaya that's been cooking in my crock pot for the last 5 hours! I'm excited to try it, and I sure hope I like it, since I have enough to feed around 15 people!!

Saturday, July 23, 2011

Just Some Thoughts

I've been having such a lazy Saturday, and it's been rather nice. I didn't have to worry about getting up early to go to rehab, or bring my mom to the doctor's, or bringing Shelby to the vet. I got up a little late, read the news in bed for a bit, and eventually got showered and dressed. I didn't sit down for breakfast until it was 12. I really haven't done too much since! I shut the a/c off in my apartment, despite the fact that it's currently 90 degrees and feels like 97. Am I crazy? Well, most people would say yes. lol However, I'm so sick of the a/c being on, that I just wanted to use the fan. I'm a little warm, but not uncomfortable. I do wish it would rain, though, so maybe the mugginess would go away!

I got a text alert earlier stating that Amy Winehouse was found dead in her London apartment. Now, while I cracked a joke about it, that maybe she should've said yes, yes, yes to rehab, I have to admit that the situation is rather sad. And, who am I to judge her? I have no idea what it is like to have an addiction to drugs and alcohol, just as much as there are many people who have no idea what it's like to have pulmonary hypertension. I would hate it if someone made fun of me because of my condition, and I'm sure there have been people who've made some sort of unkind remark. So I apologize for my snide comment about Amy's poor misfortune of having been an addict. There are some people who are able to get help from the powers of being an addict, and there are some people who fail miserably because addiction is so strong. Sadly, it seems that Amy just couldn't win that battle.

My mom is supposed to have cataract surgery in August, a week apart for each eye. I don't know why I'm nervous about her having it done, but I know that it's been a pretty routine procedure for thousands of people. And we are all really hoping she can see so much better!! She should be all healed by the time Joan gets married in September, and I'm sure she is going to be so thankful she had it done.

I brought Shelby to the vet again yesterday with my mom, and those adorable kittens were still there in the lobby. Silly me fell in love with them even more after I went over and played with them while Shelby got her laser treatment. They are just too cute!!! I KNOW I cannot get these kittens, but it makes me think about the future when Mittens isn't here anymore. I know (and I hope) that is still many years to come, but I did decide awhile back that I would never get another cat. Seeing the kittens makes me sort of change my mind. And then I get to wondering if I do decide to get another cat, should I get two?? I see how much the little kittens play with each other, and it's just so entertaining, and so I think that maybe having two cats would be a good idea. But I'm getting WAAAAY ahead of myself!!! lol Shelby has another appt next week, and I'm sure I'll be bringing her again. I really hope someone has given the kittens a good home by then!!! lol

Joan's last shower is tomorrow, in Canada. The two showers she's already had were really different, but both very nice, so I'm sure the last one will be the same way! I'm expecting there will be a ton of women at this shower, considering Rick comes from a big Italian family!

Well, I'm off to read the book I started reading yesterday. It's considerably better than the two Danielle Steel books I finished. I used to love her books when I was younger, but I don't know, maybe it's just me, but I think her writing style sucks. Either that, or I grew out of it!! Happy Saturday!