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.
It’s been 40 days since I was started on oxygen. In that time, I’ve learned a lot about what it is like to be treated differently now that my illness is no longer an invisible entity. First of all, people are nicer to me. I don’t mean that they weren’t before, but I’ve definitely noticed a change. People smile more, say hello while passing me, go out of their way to ask if I am doing ok, give up their seat for me and all in all are very kind. I love it, I am able to see what I’ve always known before, that people, in general are kind, mean well and want to help.
What is bothering me is that it has been 40 days since anyone has said anything about my height. Pretty much EVERY DAY of my life before 02, someone would make a comment, make a jab or joke about how short I am. But now that I have 02, it is like people are too scared, don’t notice or think I am too fragile to handle it. Guess what people, I am not. I am still the same sarcastic, funny, feisty woman I’ve always been. I am still short and I will not break if you tease me! I may kick you in the shin but I will not break!
Today ended that 4o day streak! A women got into the elevator with me at work and immediately said, “I like you!”. I told her I know why she liked me as she were only an inch or two taller, and she agreed and we laughed! It was great! Yes, I will admit, I have gotten angry sometimes at peoples comments but that was mainly due to their delivery. Who knows, maybe now I am just being over sensitive and want to be treated like I am used to, not like some doll that people pity.
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!
I decided to start this blog to talk about my experiences dealing with a rare condition and as a way to update my friends and family while trying to keep myself sane. I also hope that this can serve as a tool to inspire/educate others.
I was diagnosed with Pulmonary Arterial Hypertension a couple of years ago. This is basically a disease that causes high blood pressure in the arteries of the lungs. This causes the right heart to pump too hard to move oxygen through and can lead to right heart failure. PAH is relatively rare, however, it is difficult to diagnose and often times is not diagnosed because it mimics other illnesses. I have PAH due to a side effect of the treatments I was given when I was a child to cure my cancer. I was treated for Neuroblastoma when I was two until I was six years of age.
The past couple months have not been easy for me. We had a series of terrible fires in our area this summer and the poor air quality, I feel, sort of kick started the PAH into high gear. Most of you know by now, I was put on oxygen and have been in and out of the hospital. I have been through several tests, missed way too much work and slept a lot! On Monday, I saw my Pulmonary Hypertension Specialist, Dr. Joseph (Dr. J). The plan is to start me on a new medication called Opsumit. This drug will hopefully, help slow down the progression of the disease and help improve my life by helping increase my endurance, walk farther and do normal things without becoming so short of breath. I hope to get started on that next week when all the paperwork, insurance has gone through.
Dr. J also recommended that I go to the UW to be evaluated for the potential of a lung transplant. This is huge and honestly scares the shit out of me. He said that because of the damage the radiation did to my lungs to cure my cancer, it has left me with 42% lung capacity. This will unfortunately continue to decrease as I age. I have strong feelings about this but trying not to let my fears spiral out of control. After all, it is only an evaluation. I don’t have to commit to anything yet.
It’s funny because sometimes I feel that I am looking at all of this from someone else’s body. This isn’t really happening to me is it? Haven’t I been through enough already? But it is me and I am going to do what I always do, laugh, keep my head up and pretend I am not scared.