Lately, I have been dealing with a lot of depression. I have not posted much on fb or twitter or any of the other social media sites like I normally do.. except on FB i have been putting out some thoughts I have had, and I know it has been alarming to some.
I'm usually light and cheerful online, I should say, my online persona is. In real life, depression plagues me nearly daily. Even if I'm having a good day, laughing with family or friends, enjoying a walk in the neighborhood, or whatever, the darkness is still in the back of my mind. I know it's there, how could I not. It's always nagging and pocking at me thoughts. I have found myself, especially these past few days, stopping to think about something, and finding a few minutes later, that the darkness had enveloped me for what felt like a life time, but truly was only a few minutes.
I sat outside the other evening, enjoying the fresh night air, ,the first time I had gone outside of the apartment in 4 or 5 days, waiting for my daughter to come pick up something she had forgotten. I took a breath in and found myself a few minutes later with tears being held back by sheer will. Someone had stopped to speak to me and I pulled out of the darkness. This isn't unusual for me.
Yes I'm on several types of antidepressants and have been for many many years. not the same ones. You wanna know why the doctors call what they do "Practicing Medicine"? Because they haven't gotten it right yet. not for me anyways. I have had so many different types of antidepressants, it's not even funny. i bet you wouldn't be able to name any that I haven't been on, and even some that weren't meant for depression, but they wanted to see if it would work.
I have a list ready and available of coping skills.. i could rattle them off now, but i dont wanna bore you. I use coloring as wayl to try to remove the stress somewhat, but when your life is filled with stress like mine, ours, nearly everyone's-
how can it not be? -
as a parent I worry about my daughters and my granddaughter. I worry about my family,my mom, my siblings, nieces and nephews, inlaws, etc. i worry about my phriends and friends. I worry about the planet and the atmosphere.of course, many people have called me a worry wart, but i have found a way to keep my mind pretty much blank...
netflix, tv shows, movies etc, and at the same time, crafting of some sort. i used to craft like crazy for my grand but now that nearly 3,000 miles are between us, i doubt i will be doing that anymore. christmas gifts are all but done... just a few more to make.. i used to craft for awareness month, and conferences... sold the proceeds and presented it to pha. last conference was 120 for jewelry and ribbons. lots of fun! music and friends .. wow i guess i did tell you my list, basically. so i know how to care for myself when i get down.
i just dont care right now to care for myself. i dont, i have family calling and sending me pm's. go see a shrink. pray. God will help you. take your meds. etc etc etc. right now, none of these help and i dont care if they do or not. i know when to seek help, inpatient i mean... and those who are close to me know that i have been inpatient for suicidal ideations several times. ok ok many times. like i said, i know what to do and when to do it
I truly truly appreciate and love all the love and support I have gotten online, in person, via phone or text, etc. I even got a skype call from a dear dear friends across the county. It means the world to me knowing that you guys care and pray for me. I do for you guys too.
I'd like to say that this too shall pass, but for those of us with mental illness, it doesn't pass. it doesn't go away. it gets a little better, and then comes back, and gets better and comes back....
Wednesday, November 4, 2015
Saturday, October 24, 2015
Thursday, September 3, 2015
18 years ago.....
Eighteen years ago today, Doctor Frost from the Methodist Hospital (at the time), in Houston Texas diagnosed me with Primary Pulmonary Hypertension (PPH). Primary just means that i have the condition due to unknown causes, it is now called Idiopathic and PH has been categorized by types, so PPH is now known as Pulmonary Arterial Hypertension.
About a week later, I returned to the Methodist Hospital after passing out in the small town I lived in. I woke up from my very first Right Heart Catheterization (RHC) and found myself attached by catheter, tubing and other medical device, to a pump infusing medication into my heart 24 hours a day. Flolan, the med I had to mix every single day, and keep on ice while attached to the pump, came with some heavy heavy side effects. Nausea, vomiting and diarrhea made me loose nearly a hundred pounds in a matter of months. Pain in the jaw didn't help, that I would get with every first bite during each meal, or snacking, of the day. If I salivated at all during the day, I'd get jaw pain. If I thought of food, got a craving, became at all thirsty or hungry, this jaw pain would hit. it was so bad thata most of the time, I'd skip meals to avoid it. Exhaustion, a symptom of Pulmonary Hypertension, was even worse for me while on Flolan. So was leg pain and fatigue, which I still to this day get, when walking for any length of time. There were many more side effects, but these were the some of the worst.
Four years later, Tracleer came on the market, an oral pill taken twice a day. Taking a pill a day took place of mixing powdered medications vials, with sterile diluent, a fluid used to make the powdered Flolan into a liquid. Unlike Flolan, Tracleer had very few side effects, dizziness and the possibility of elevated liver enzymes, were the worst, and were easily tolerated by me. Monthly blood draws helps to show if the liver enzymes became elevated and if they did, they would either lower the dose, or discontinue the use of Tracleer. I was on Tracleer for 11 years.
On my eleventh year, I was diagnosed with Pulmonary Venous Hypertension, (PVH) also called Diastolic Dysfunction, HFPEF, Heart Failure with Preserved Ejection Fraction.and a few other names. I was transitioned off of Tracleer and put onto Sildenafil, the generic form of Viagra. Tracleer, like most other PAH medications, negatively affects PVH.
I have learned a lot through my eighteen years since diagnosis and the two and a half years prior , where I was constantly being misdiagnosed with things such as depression, anxiety, and my fav "We dont know why people pass out, they just do".
a few things that I've learned off the top of my head:
1. You must advocate for yourself. and if you can't (Like I cannot, have never been able to), take someone with you to doctor's appointments and hospital stays or ER visits to advocate for you.
2. Always keep a list of doctors - with phone numbers and addresses - in your wallet or purse, or cell phone. Also add all your medications with dosages, who prescribed them for you, and what they are used for. I keep a written document on my computer to print out when I go see the docs, and I keep a list on my cell phone.
3. Use the ICE - In Case of Emergency - on your phone's contacts. I have my sister, her husband, and myself as ICE. I have myself because in the notes section of the contacts, Be sure, if you do use ICE, the people you chose know your condition(s) and medication(s) and any allergies you might have....
4. Know the meds you are on. Know any side effects. Know the dosages and what it's for. If you have multiple conditions, (CoMorbidity), it's even more important to know what they are for. If you are on IV or subq meds, know your dosage and when you increase the rate.
5. Be prepared for any emergency. the Pulmonary Hypertension Association has lots of ideas to help you be prepared. Contact your local fire department, emergency room, electric company, to notify them of your condition. Fire department to let them know what PH is, in case they have never heard of it, to let them know to NEVER turn off your pump, if you are on iv therapy,and what to do if your catheter line breaks. Emergency Rooms also need to be contacted. PH is such a rare disease that a lot of small town hospitals dont know about it. I had to educate the head nurse on what to do, how to mix my Flolan, and phone numbers to call if she needed more help. The Electric Company should be called if your medications need to be kept cold, if you are on oxygen and use a concentration, in case of loss of power due to storm or anything, they need to put you on a list of people who need their power turned on as soon as possible. Sometimes they will advice you to go to the hospital and use their fridges for meds, and use their o2. Mine did this, but that was only because we expected electricity to be out for a few days due to a hurricane that became a tropical depression. Call them too if a storm is expected. Sometimes they are so swamped they don't always check the lists.
6. Make sure to have all your docs communicating with each other. Sometimes, it's as easy as a letter of what happened at your latest appointments, or results from blood work, echo, or RHC. If at all possible, keep all your doctors in one hospital system. It makes things so much easier!
7. Get as much support as you can. Any Chronic Illness will take so much out of you and can cause depression. With a big support network, of people you can rely on, you know you will always have a meal if you don't have enough energy to cook, or a way to get to appointments if you cannot drive yourself. But more importantly, in my opinion, is emotional support. Online, people you can talk to on the phone, clergy, family, can help so much!! Lean heavily on your beliefs. Pray often. Believe and have faith that a cure will come! and when you can't pray or believe, call someone to help you!! or jump on line.
There's a lot more I'm sure, but just can't think of any at this precise moment.
There is one more thing I have to say. I know I pretty much told you all the bad things about Flolan, but if a doctor were to tell me I needed to get back on it, I'd do it in a heart beat! Flolan saved my life all those years ago. Flolan gave me back a quality of life I never thought I would have. And after being given two years to live, Flolan gave me 4 years and if not for Flolan, I doubt I would be here today!!
About a week later, I returned to the Methodist Hospital after passing out in the small town I lived in. I woke up from my very first Right Heart Catheterization (RHC) and found myself attached by catheter, tubing and other medical device, to a pump infusing medication into my heart 24 hours a day. Flolan, the med I had to mix every single day, and keep on ice while attached to the pump, came with some heavy heavy side effects. Nausea, vomiting and diarrhea made me loose nearly a hundred pounds in a matter of months. Pain in the jaw didn't help, that I would get with every first bite during each meal, or snacking, of the day. If I salivated at all during the day, I'd get jaw pain. If I thought of food, got a craving, became at all thirsty or hungry, this jaw pain would hit. it was so bad thata most of the time, I'd skip meals to avoid it. Exhaustion, a symptom of Pulmonary Hypertension, was even worse for me while on Flolan. So was leg pain and fatigue, which I still to this day get, when walking for any length of time. There were many more side effects, but these were the some of the worst.
Four years later, Tracleer came on the market, an oral pill taken twice a day. Taking a pill a day took place of mixing powdered medications vials, with sterile diluent, a fluid used to make the powdered Flolan into a liquid. Unlike Flolan, Tracleer had very few side effects, dizziness and the possibility of elevated liver enzymes, were the worst, and were easily tolerated by me. Monthly blood draws helps to show if the liver enzymes became elevated and if they did, they would either lower the dose, or discontinue the use of Tracleer. I was on Tracleer for 11 years.
On my eleventh year, I was diagnosed with Pulmonary Venous Hypertension, (PVH) also called Diastolic Dysfunction, HFPEF, Heart Failure with Preserved Ejection Fraction.and a few other names. I was transitioned off of Tracleer and put onto Sildenafil, the generic form of Viagra. Tracleer, like most other PAH medications, negatively affects PVH.
I have learned a lot through my eighteen years since diagnosis and the two and a half years prior , where I was constantly being misdiagnosed with things such as depression, anxiety, and my fav "We dont know why people pass out, they just do".
a few things that I've learned off the top of my head:
1. You must advocate for yourself. and if you can't (Like I cannot, have never been able to), take someone with you to doctor's appointments and hospital stays or ER visits to advocate for you.
2. Always keep a list of doctors - with phone numbers and addresses - in your wallet or purse, or cell phone. Also add all your medications with dosages, who prescribed them for you, and what they are used for. I keep a written document on my computer to print out when I go see the docs, and I keep a list on my cell phone.
3. Use the ICE - In Case of Emergency - on your phone's contacts. I have my sister, her husband, and myself as ICE. I have myself because in the notes section of the contacts, Be sure, if you do use ICE, the people you chose know your condition(s) and medication(s) and any allergies you might have....
4. Know the meds you are on. Know any side effects. Know the dosages and what it's for. If you have multiple conditions, (CoMorbidity), it's even more important to know what they are for. If you are on IV or subq meds, know your dosage and when you increase the rate.
5. Be prepared for any emergency. the Pulmonary Hypertension Association has lots of ideas to help you be prepared. Contact your local fire department, emergency room, electric company, to notify them of your condition. Fire department to let them know what PH is, in case they have never heard of it, to let them know to NEVER turn off your pump, if you are on iv therapy,and what to do if your catheter line breaks. Emergency Rooms also need to be contacted. PH is such a rare disease that a lot of small town hospitals dont know about it. I had to educate the head nurse on what to do, how to mix my Flolan, and phone numbers to call if she needed more help. The Electric Company should be called if your medications need to be kept cold, if you are on oxygen and use a concentration, in case of loss of power due to storm or anything, they need to put you on a list of people who need their power turned on as soon as possible. Sometimes they will advice you to go to the hospital and use their fridges for meds, and use their o2. Mine did this, but that was only because we expected electricity to be out for a few days due to a hurricane that became a tropical depression. Call them too if a storm is expected. Sometimes they are so swamped they don't always check the lists.
6. Make sure to have all your docs communicating with each other. Sometimes, it's as easy as a letter of what happened at your latest appointments, or results from blood work, echo, or RHC. If at all possible, keep all your doctors in one hospital system. It makes things so much easier!
7. Get as much support as you can. Any Chronic Illness will take so much out of you and can cause depression. With a big support network, of people you can rely on, you know you will always have a meal if you don't have enough energy to cook, or a way to get to appointments if you cannot drive yourself. But more importantly, in my opinion, is emotional support. Online, people you can talk to on the phone, clergy, family, can help so much!! Lean heavily on your beliefs. Pray often. Believe and have faith that a cure will come! and when you can't pray or believe, call someone to help you!! or jump on line.
There's a lot more I'm sure, but just can't think of any at this precise moment.
There is one more thing I have to say. I know I pretty much told you all the bad things about Flolan, but if a doctor were to tell me I needed to get back on it, I'd do it in a heart beat! Flolan saved my life all those years ago. Flolan gave me back a quality of life I never thought I would have. And after being given two years to live, Flolan gave me 4 years and if not for Flolan, I doubt I would be here today!!
Thank you to much loved ones my friends and PHriends. My family and PHamily. You guys are so amazing! I doubt I would be here today if not for you guys too!!!! I love you more than you will ever know!!!!
Monday, August 3, 2015
 |
| I do think this is true but.... = |
I dont want to end this post on a negative or sad note. I didn't want this to be about me. I didn't want this to be a sad post. I wanted it be more like , well not this..... i dont know what I want, what I wanted to say...
doesn't it always feel like i'm complaining about something? I thank you from the bottom of my sick heart ( lol ) continuing to read this and hopefully you wont stop reading this blog... If you dont mind, leave me a comment and let me know what you think about this post or my blog. thanks!!!
HUGS n Periwinkle Kisses
Thursday, July 30, 2015
Traveling with Pulmonary Hypertension
I was very fortunate to be able to go to the Pulmonary Hypertension Association's PHA On The Road. One The Road is a mini single day conference. Information, support, friendship and hope abounds at On The Road and Conference a like! I was asked to speak about Traveling with Pulmonary Hypertension... I have had lots of experience traveling with PH, while on the iv medication Flolan, and on regular oral medications. So I felt confident talking about this subject.
I usually feel very nervous when speaking in front of people, even though I love the feeling I get when I'm told that people learned from me, like I did after this On The Road day. But since I'm so nervous, I like to have written down what I'm going to say, so that I'm not sitting there going uhm! uhm! uhm! lol
the following is what I said at the PHA On The Road
#PHAware #PHAssociation #PHAOnTheRoad #SickGirlProblems #HugsnPeriwinkleKisses
Travel like Most things in Life can be as stressful or stress free as we make it out to be. Even outside influences can be made easier with a bit of planning. In order to get here at a good time, i made plans a-b and c. I had to watch my granddaughter Ellie over night so my daughter could work a 13 hour shift. If my daughter couldn't pick up my Elie before 8, I wouldn't be able t get a ride with my sister and her husband, and I would have to find a different way to get here. I researched grey hound and found the ride was about 4 hours long and a little more than $20. Then , I thought, if she's not here by 10am, I'd have to figure out something else. I called a friend I knew was coming and told her of my dilemma. I went to bed felling so much more confident that I would make it here without too much hassle!
Planning what you will take with you is very important but knowing where you will put ur belongings can become a matter of life and death, when traveling with a chronic and rare disease like PH. if you pack your flolan or Remodulin in ur check in luggage on an airplane, did u know it will freeze and become basically useless. What if ur check in has been lost? All ur mixing supplies, meds, oral meds, etcetera could be gone. where would you go to get them replaced?
Researching and planning for these unforeseen and unfortunate events could very literally save your life. Did you research local ph docs before coming here today? What about ordering O2 for the day or night ?
Have you flown since being on IV meds? When I was on flolan, I flew at least once a year home to SoCal. Going thru security I was always told to remove my fanny pack. No matter how many times I insisted they still said I needed to remove my cadd pump. That's when I would take out my medical binder from my backpack. By planning ahead and talking to my doctors before hand, dr frost, my specialist, agreed to write a letter to anyone who insisted I remove my catheter, or asked me why I was carrying around 20 bottles of meds.
Your pumps should also never go thru the X-ray machines. The frequency of these machines can mess up your pump, either by screwing w the dose or other just as dangerous things.
Flying with your Cpap can also cause issues if you are not prepared. Just like ur laptop, your Cpap or bipap machine has to come out of its bag at security. Under the discretion of the tsa agents, they may remove the Cpap from the conveyor belt and swab the machine. You have the right to request they use a clean pair of gloves and a new swab stick & pad. You should never let ur machine out of your site either. Walk with the agent as they check it, making sure u 1. Don't lose it, and 2. It's not dropped or broken.
Before booking your tickets, if needed, you can request a wheel chair at all locations. I do recommend getting the wheel chair. I always do. Travel is exhausting for me , packing and preparing for the flight, driving the airport or taking a shuttle, unloading luggage standing in line and more. Who knows how much energy I'll have after all this. So I always ask for a Wheelchair.
If oxygen is needed on the flight , at Your destination or anywhere in between, contact your local O2 company who will give u the info you need. Plus now, you need your own personal portable oxygen concentrator for any flights. Tanks are no longer provided.
As with most all things you do for the first time after being diagnosed with pulmonary hypertension, consult with your specialists to make sure it's ok for you to travel out of state or out of the country.
As you can see with a little preparation and research you can actually enjoy your trip and not be stressed out before ever leaving your home.
I usually feel very nervous when speaking in front of people, even though I love the feeling I get when I'm told that people learned from me, like I did after this On The Road day. But since I'm so nervous, I like to have written down what I'm going to say, so that I'm not sitting there going uhm! uhm! uhm! lol
the following is what I said at the PHA On The Road
#PHAware #PHAssociation #PHAOnTheRoad #SickGirlProblems #HugsnPeriwinkleKisses
Planning what you will take with you is very important but knowing where you will put ur belongings can become a matter of life and death, when traveling with a chronic and rare disease like PH. if you pack your flolan or Remodulin in ur check in luggage on an airplane, did u know it will freeze and become basically useless. What if ur check in has been lost? All ur mixing supplies, meds, oral meds, etcetera could be gone. where would you go to get them replaced?
Researching and planning for these unforeseen and unfortunate events could very literally save your life. Did you research local ph docs before coming here today? What about ordering O2 for the day or night ?
Have you flown since being on IV meds? When I was on flolan, I flew at least once a year home to SoCal. Going thru security I was always told to remove my fanny pack. No matter how many times I insisted they still said I needed to remove my cadd pump. That's when I would take out my medical binder from my backpack. By planning ahead and talking to my doctors before hand, dr frost, my specialist, agreed to write a letter to anyone who insisted I remove my catheter, or asked me why I was carrying around 20 bottles of meds.
Your pumps should also never go thru the X-ray machines. The frequency of these machines can mess up your pump, either by screwing w the dose or other just as dangerous things.
Flying with your Cpap can also cause issues if you are not prepared. Just like ur laptop, your Cpap or bipap machine has to come out of its bag at security. Under the discretion of the tsa agents, they may remove the Cpap from the conveyor belt and swab the machine. You have the right to request they use a clean pair of gloves and a new swab stick & pad. You should never let ur machine out of your site either. Walk with the agent as they check it, making sure u 1. Don't lose it, and 2. It's not dropped or broken.
Before booking your tickets, if needed, you can request a wheel chair at all locations. I do recommend getting the wheel chair. I always do. Travel is exhausting for me , packing and preparing for the flight, driving the airport or taking a shuttle, unloading luggage standing in line and more. Who knows how much energy I'll have after all this. So I always ask for a Wheelchair.
If oxygen is needed on the flight , at Your destination or anywhere in between, contact your local O2 company who will give u the info you need. Plus now, you need your own personal portable oxygen concentrator for any flights. Tanks are no longer provided.
As with most all things you do for the first time after being diagnosed with pulmonary hypertension, consult with your specialists to make sure it's ok for you to travel out of state or out of the country.
As you can see with a little preparation and research you can actually enjoy your trip and not be stressed out before ever leaving your home.
Monday, May 4, 2015
Alex Flipse's Personal Page for 2015 Days of Unity
Alex Flipse's Personal Page for 2015 Days of Unity
This is my o2breathe.org webpage for my unity walk! I am again going to try to walk in honor or all of us, the PHighters, the Warriors, The Heroes! and of course, for all our loved ones that have passed due to this horrible disease! I plan to begin my walk tomorrow, May 5, 2015, the World Pulmonary Hypertension Day 2015. all proceeds go to the Pulmonary Hypertension Association ! #PHAware #TeamPHenomHope #UnityWalk #DaysofUnity#WorldPHDay2015 #SickGirlProblems
Please help me raise $500 for PHA and help us find the cure!
thank you so much for reading my blog and if you can, for donating to this very very important, and close to my heart (pun intended) cause!
Saturday, April 18, 2015
I saw this and I had to write and write and write.....
 |
| A graphic I saw on facebook tonight |
This is my every night. just wish something different might happen every once in a while. you know? yes I know i just got back from a wonderful wonderful vacay!!! however, here I sit, watching grey's anatomy trying to get caught up... maybe my kids are right. ? maybe I'm not really living. maybe i'm surviving. i just feel so old lately. not enough energy or umph or whatever. maybe do you think i'm set in my ways? arggggg i should be filled with happiness for my wonderful trip meeting so many wonderful family members!!! seeing my niece and nephew and spending the day with the... seeing my sister, spending a day with her... getting a few minutes with my Godmother.... I'll take any time I can with my family... i'm glad to be home. dont get me wrong. i'm soooo glad I went!!! I'm SOOOOO GLAD I went!!! Grateful to my family that paid for me to be able to go! but then I come home to the same old same old. I dont know. Am I asking too much? Am I expecting too much? I think maybe I am.... I guess if I had someone to sit with me and cuddle with me and watch tv with me... maybe I wouldn't be so much like this.... i just dont know why I can't make ME enough for ME. I'm trying to learn, to expand my horizons... to better myself. yeah. it's only been two full days that i've been back from SoCal and Mexico... maybe I am expecting too much from myself. I mean, I am chronically ill. I do get tired very easily lately. I can only do so much with my time and energy and I have to keep watch over my limited amount of energy...
why does everything in my life, in my body, my mind, my plans, why do these things have to have PH hanging over it? I have been sick with Pulmonary Hypertension for 16 years.... SIXTEEN YEARS! I can say I have been struggling to breathe, to survive... but now I'm wondering, have I been fighting to live? and have I really been living if I spend so much frikin time online.. watching tv, crafting? I took some amazing pics while I was on vacation. I mentioned to a friend that one of my uncles works for the government in Mexico, in their tourist dept. They PAY him to travel and take pics of his surrounding areas. Why, I asked, Can't I find a job like that. her answer was I could if I really tried. but of course, my response was, I never went to college, never studied photography, dont have any experience job wise, taking pics... and of course, I'm chronically ill. who would want someone who's chronically ill to work for them?
these are things that I think about all the time. honestly. I do want to know if someone would want to hire a person who would call in sick let's just say 1/4 of the time. so that would be, what? let's say for shits and giggles, 2 days a week, they would be too sick to work. ok now let's look at me.... with my pulmonary hypertension, i can say that I barely missed work. however, with my fibromyalgia, panhypopituitarism, chronic pain due to sciatica and so many more other autoimmune diseases, I started having to miss work 3-4 times a week. yeah... no one would want me to work for them....
Of course, you dont say that in an interview do you? I'm all about full disclosure from the get go. I want them to know what in the heck they are getting into with me. you know? It's also illegal for me to NOT say that I'm disabled. In fact, in all my jobs, as far back as I can remember, I have had to call into the IRS automatic phone line to answer some questions, including: Are you disabled and receiving social security disability insurance? why yes. yes I am. and then they take you to a live operator who asks you all kinds of other questions. so they will know. and if you don't tell them, they can fire you for it. soooooo I'm all about full disclosure. this is me. this is who I am and how I think.
I also would not want to wait to tell someone, that I was interested in, that hey, and btw, now that we have been seeing eachother so such and such a time, i wanted to let you know, I have a chronic, progressive, incurable disease, oh and btw, it will someday kill me. let me just throw that in there too. you think? no. could be why I've taken myself off the dating sites. I dont know.
So Friday night,, twelve twenty-three a.m. and I'm about to turn off these lights and go to sleep.....
GN!
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