At this point, there are too many things going on medically with me and I am not about to write a medical dictionary to include to this post. I ain’t got time for that! I guess the main thing is that my lungs are getting worse which causes my heart to work harder to pump blood through my body. Which leads to fluid retention in my abdomen that forces the other organs upwards. Right now I can feel my liver right up against my rib cage. I have been taking care of this for the past year using heavy duty diuretics to help get the water off. However when you do that, you’re also putting strain on other parts of her body so my kidneys started to fight back and all the other cells and what not in there or fighting trying to figure out where to go and what to do and it’s like they have a referee in there but nobody knows where to start first who’s going to win this battle. All of this leaves me extremely exhausted and short of breath doing minimal activities. I’m very weak and very very short of breath even changing my clothes are taking off my socks. I was glad my mom is here because I need help getting dressed after I shower due to pure exhaustion.
You can imagine how frustrating this is for me as well as others around you see the struggle. I need to see a endocrinologist ASAP because something is out of whack with my parathyroid. Spokane doesn’t have an Endochrinologist available that would be able to see me without being on a long 3 to 6 month wait list. So I am most likely going to be going to Seattle to see my pulmonary hypertension specialist at the University of Washington and see about transferring my care there for the time being. I think that would be the quickest way to get things resolved and to be able to see the specialists in a timely manner and that will give me and my family peace of mind. My main motivation to do this right now is because we have a family vacation planned to go to Kauai in March! I am not going to miss that trip! So they are going to do everything they can to fix me before my flight leaves March 1st!
I appreciate all your words of encouragement and prayers and the love you all have showed me this past year. I enjoy knowing that you read my thoughts and often times help me remember that I am strong. Life is rough, it can be a difficult bitch that can break you but only if you let it!
As I sign off, I realize maybe this is not a very coherent blog. But it’s real and it’s raw so I’m not going to edit it.
I feel like Dorothy in the Wizard of Oz off on an adventure to find the wizard. The wonderful Wizard of Oz who is going to help them all. I just need to find my wizard! A pair of some ruby red heels wouldn’t be bad either!
Wanna hear something weird? Ok, hear me out. I’ve been telling my husband this is what I want to happen, yes it’s my magical thinking but you never know. I want 3D printed lungs. I want to be able to take a pill (you know those little spongy dinosaurs you buy for kids that when you put them in water they expand?) and the pill would be spongy tiny lungs. I would swallow it and it would expand and regenerate/replace my asshole lungs! Then I would just poop ’em out. I know I am a bit odd. But I am going to UC San Diego next month and I will propose this idea to them. They may order a psych consult…OR it may get them thinking. Either way, I feel I have put this idea out there into the universe and set it in motion. I’d like to hear your thoughts or ideas!
It’s time for an update, too much has happened in the last couple weeks I need to catch you up! So we will play bullet point catch up! So, if you want more details, comment below or send me a message.
- San Diego transplant team called me back after reviewing my records and want to see me in person! This means that they do not feel they can turn me down for transplant without seeing “the whole patient”! Which is weird cause three other places said no without seeing my smiling face but whatever. I still feel that 99% I am not going to be a candidate but hey, it’s San Diego so I will go and have a short beach vacation! I will probably be going there in June.
- Heading back to UW tomorrow to see Dr. Leary and get the results of my sleep study and see how to proceed. My medication seems to be working wonders even though I still have some pretty rough days.
- It’s May and it feels like summer! The warmer weather has been a godsend for my health. I am outside more! I walked around the block with Buster yesterday and barely had to stop! I also walked a great deal Sunday when I met my husband downtown after he ran Bloomsday! This is HUGE because six months ago I was barely able to walk 1/4 of a block!
- Something interesting is happening to my palate. I suddenly love spicy foods, the hotter the better. I also found that I was craving sour patch kids yesterday which I never cared for. Holy crap, I nearly ate the whole bag and then hid it from my son before he came home from school!
- Concerts I will see this month in order: Aesop Rock in Seattle on Friday (if I don’t have a heart cath), Violent Femmes on the 17th, The Cure in Portland with my bestie on the 28th and then I see The Cure in Boise again on June 2nd!! I am so excited!
- After a lot of debating, my best friend set up a Gofundme page on my behalf. I couldn’t be more appreciative of all who have already donated and been so generous! We truly have so many wonderful people in our lives! The donations will help with my medical bills and traveling to all these appointments! With funds already donated, I was able to order a small portable 02 unit. It’s so light wt and will help me get around so much easier! Thank you to all who donated, every dollar helps! Check out the link to learn more about the unit that is going to make me so happy! https://youtu.be/volW7IqOyP0
I didn’t always know what I wanted to do when I grew up. I still don’t think I will grow up….yes, I know I am short, I am done growing though! However, I did develop into an adult, even though I am not “mature”. I laugh at dick and fart jokes, and what not. However, I did manage to go to college and get a “REAL job”. I became a Social Worker but not because I wanted to change the world or anything like that. I am not what most think, a bleeding heart social worker that will bend at whatever poor soul bats their eye lashes at me. I learned that the hard way as an ER Social worker, getting duped by drug seekers who knew how to turn on the tears with their stories just to get meds. Oh no, I am a hard ass, some even called me The Hammer! I believe that people should indeed help themselves, while it was my job to assist them in finding the right resources that will enable them to do so. I became a Social Worker to give back all the energy, love and compassion that my family and I were given when I was a child with cancer.
The picture above was taken in 2012. I’ve always wanted an official picture in front of the American flag like some kind of VIP! Sometimes I look at it and pretend I’m the first woman president. Most of my career as a Social Worker has been at the VA caring for our nations brave Veterans. A career cut too short, nearly making my 10 year pin. I would have been made ten years in April. I worked at the VA as an Acute Care SW, helping to ensure veteran’s were safe discharging from the hospital. Then I took on the job as the Caregiver Support Coordinator. This week I sadly say goodbye to a job as the Cancer Care Navigation Social Worker. I helped to build this new program that I hope will continue through out all our VA’s in the country. It is a new approach to cancer care and helps our Veteran’s and their families navigate what is too often a very complicated system and helps to make sure they get they cancer care they need an eliminate barriers to their care.
I never thought I would have to retire so early. However, due to my health reasons I must now take care of myself and my family. I am very sad to leave and in a state of emotional turmoil about it. I will miss my patients, my coworkers, the friends I have made and most of all the challenges. So on my last week of work, as I pack up my office, I will think about all that I have learned. I will think back to all the lessons I have be taught and patients who have touched my heart. I will thank my mentors, the wonderful supervisors (Cathy and Tom) and amazing friends I have made had along the way. It’s been a great experience. It is now time for me to put my focus toward new possibilities.
Today was pretty productive. I saw Dr. Joseph today who didn’t have a lot of answers for me which was kinda upsetting. He says the new medication may take time to work and he is deferring to the University of WA specialists for now. He recommends that I stay on my oxygen and is supportive of me no longer working. I am coming to terms with this more and more. After a long talk with my husband, we both think this will be the best. I finished what I could of my social security application today as well as the paperwork for medical retirement through work. I think I will work until the next pay period and then be done. As sad as this is, I need to do what is right for my health and family. My son is beyond thrilled that I can spend more time at home with him and so am I! I figure, I will keep my SW licensure up to date though, so at some point if I get better I can return to work!
After sitting at the computer for three hours completing paper work, I am done, put a fork in me! I am looking forward to the holidays with my friends and family! Merry Christmas everyone!
I worked three days in a row and I have no words to explain the level of exhaustion I feel. First two days were great. I went to work was productive was able to catch up with work and friends. Maybe it’s the cold air making it harder to breathe? Maybe it’s not and it’s just my disease progressing. Either way, I’m not sure I can go back tomorrow. I’ve been on my new medication almost a month now. I don’t feel any different yet. Good thing is I’m not experiencing any negative side effects either.
I saw a new cardiologist last week and had an echo done last Friday. I will meet with my PH MD on Monday and we will reassess where I’m at and likely schedule another heart cath to measure my pulmonary artery pressures again.
My life is trying to balance family, doctors appointments and working when I can. Im also up to my eyeballs in paperwork trying to fill out paperwork for social security and medical retirement for the VA, while trying to smile, get ready for the holidays, etc. Needless to say I’m extremely overwhelmed, cranky and just want to hibernate and wake up with a new set of lungs!!
I’m bitching a lot I know! So I will go to bed and close saying I’m grateful to my friends and family who are helping support me through this! I appreciate the hugs, check ins, meals and offers of help and hope!
Living with this illness sucks. I had a bad few days last week and realized that it was due to the poor air quality. Pretty much EVERYONE had been out of power for days and was burning wood stoves for heat. It’s been very cold and virtually no wind which has left the air stagnant and nasty. Having PH is like breathing through a straw. Now imagine, breathing through a straw and all you are getting is dirty air. It’s left me more short of breath than usual and causes my heart to race out of control! The above picture shows my 02 sats and heart rate just after taking a shower.
Besides not breathing well, I’ve had a lot on my mind the past couple weeks. While I love to work and LOVE my job, I am starting to realize how hard it is for me to do anymore. A few days there and I am wiped out. It had been suggested that I apply for disability. At first, this was something I didn’t want to consider. Hell, I still don’t but I am not sure how much longer I can work full time. I am not even at work today because I needed more time to recover from last week.
I usually do not let my mind go down the rabbit hole. Sometimes it can get scary down there. However, I need to be realistic. While, medication can help slow the progression of this disease, there is no cure. I know that not one of us knows how much time we have left on this earth. I could die today in my sleep or by going out and getting hit by a car. Any of us could. I have always been one to stress living each day to the fullest as life is too short. However, unless you are given a life limiting disease, you really don’t have to think about the clock ticking.
My one true goal is to see my son grow up and graduate high school and get into college. If I live to see that then I can plan my next goal of seeing him get married and have kids. Until then, I want to spend as much quality time with him as I can. This is the only thing that make me feel applying for disability would be worth it. He is in 7th grade right now so I have only a limited time he will be home. I would like to be here for him before and after school, and be able to take him to his after school sports. I don’t want to leave my husband out either. I want to be the best wife I can be. Going to work leaves me so tired that when I get home I don’t feel like doing anything. This often leaves him to figure out dinner and do all the of the chores. I figure I could continue working and be too exhausted to do anything, or I could focus my energy on family.
Applying for disability is not I am deciding now, but as you can read it is being considered. I would qualify. I looked up my condition on the SSA website and it says that anyone with PAH whose pressures are 40 qualify. My pressures are in the 60’s. I started a new medication called Opsumit on 11/21 and I am hoping it helps making me feel better. So far I don’t notice a difference but I am not having any negative side effects so that is a bonus. Is it more important to me to feel good at work or to feel good at home with my family? I am so torn with this decision and need to look at all my options. I would like to hear from others who have faced something similar, especially if they have PH.
If you want more information on PH please do not google. Go to http://phassociation.org/ for most up to date information.
Sometimes it is the smallest things he does. He has no idea how grand these small things actually are. I am fortunate to have him in my life. My husband is the world to me. I worked a full day today and I am exhausted. Working was great, I was able to go through my thousands of emails, make important phone calls to some of my patients and talk to friends. I got home and immediately helped Evan with his homework and made sure he had everything done that he needed to turn in for tomorrow. I thought about dinner for a second, opened the fridge and quickly shut it, making my way to the couch. I stayed there until Scott came home. Without a complaint or question, he was in the kitchen making us waffles for dinner. They were amazing! Waffles and tater tots that he cooked in the waffle iron. Waffles that were as comforting as they were delicious. It is these moments in our life that I know I married the right guy. He is my rock and I know I would not be able to face this without him. Cheers to you Mr. Wilhelm, I love you!