Why I've been MIA
I haven't forgotten about any of you on beBee and I'd like to remind so many what a great impression you've left with me. I've learned a lot and gained some wonderful friendships thanks to beBee.
Tonight someone messaged me on Facebook asking me to come back and telling me I was missed. My gut sunk because I don't want anyone to feel I've been avoiding you or beBee for personal reasons. My avoidance has been family related and unintentional. I must say, the person who got a hold of me struck a chord and made me homesick for those of you I've built relationships with over the years.
My life has turned upside down over the past year and in turn, it's caused me to withdraw in many ways. In part, withdrawing wasn't a conscience decision. My husband (as many of you know) has suffered from a few rare lung conditions and we were hoping things would begin to look up after his Doctors prescribed a medication with hopes of shrinking the many granulomas in his lungs so he would be able to breathe better. He was on the medication for a year and a half and had no improvements, as a matter of fact, he began developing lung infections and his breathing continued to decline.
When the doctors realized the Pulmonary drugs weren't working they decided there may be another issue affecting his breathing... his heart. I was really hoping they were wrong but they did find through testing that his heart had been affected, to what degree, they weren't sure at the time. It wasn't until June of this year, 2018, that the Doctors were able to pinpoint one specific problem, they found Diastolic Left Heart Failure after a series of tests including, a heart Catheterization. Before they came up with a diagnosis with new medical treatment I was feeling helpless and highly fearful. I kept telling my mind not to go 'there' but it did. For the first time in my life, I was gripped with the fear of losing my husband. We have been going back and forth to Doctors since 2011 and it wasn't until this year they were able to pinpoint another issue. What really upsets me is the fact that he had a heart Catheterization in 2011 at a different hospital and it showed "Mild Pulmonary Hypertension." I had no clue what that meant but the Cardiologist at the time said he wasn't concerned about it.
The Cardiologist he did see in 2011 should have followed up with my husband after the initial results of the Cath but he didn't. I didn't understand what Pulmonary Hypertension was, so I blew it off. I actually thought it had something to do with his blood pressure, how wrong I was. Because the finding of mild Pulmonary Hypertension was put on the back burner and the only focus was on his lungs, his condition worsened over the years.
There are no cures for heart failure of Pulmonary Hypertension
We used to see Pulmonary Doctors in Erie, Pa. Since 2012, we've been with a group of Physicians at UPMC- Pittsburgh. It's taken this long to find the proper multidisciplinary team to continue to figure out what is causing the root of my husband's breathing difficulties, along with severe fatigue and a new symptom that reared over the past 6 months or so, fluid retention in upper abdomen and lower lungs. My husband just had another invasive heart procedure done last week and we are still waiting for the results. In the mean time, he's on different medications which allow him to function for part of the day and that's an improvement compared to 6 months ago. So, even though there isn't a cure for either illness, they do have medications to help improve the quality of life of a person suffering from these illnesses. The test he had done last week was for purposes of getting the insurance to approve research medications which are proving to work in people who suffer from Pulmonary Hypertension. It will be another 2-3 weeks before we get the final results of the testing.
This isn't about me
But, it sure does affect a person both, mentally and physically when you are determined to help a loved one. So, I have put myself and my own needs beyond the back burner. I haven't been myself for some time. I'm just now realizing that if I don't work on me, I won't be of any help to my husband because my mind and body feel that burned out. I lost my mom 2.5 years ago and it wasn't long after she passed that my husband's condition seemed to worsen. I admit, I have a major fear of loss. I'm sure that has added to my mental exhaustion because you can't help but worry about losing another person you love when reality smacks you right in the face. I do not say this for sympathy, it's just a fact. I decided to go back to counseling recently and I'm hoping to find better coping techniques so I can be 110% present.
My husband seems to be "nesting"
I thought it was my imagination but I found out from a person who he works with that he wanted to be sure all the paperwork was correct so I would be taken care of. Honestly, I know the person meant well but, it broke my heart to hear that. He's also been busy putting in new windows, having our home painted as if he's on the time clock. Again, I was hoping that too, was my imagination but he came into our den the other evening with tears in his eyes telling me that he's doing this for me. My husband went on to say, "I need to get the home updated for you and it's been long over due.. please don't be upset with me that I'm not able to go anywhere because getting the house done is very important to me. He added: But, I promise when I'm done, we will go somewhere together and just relax. We haven't been anywhere together with the exception of the hospital since last October. I just want time with him, it doesn't matter where. I want to see him relax and take his mind off of all this medical shit, if even for a week. For the record, I have not placed any guilt on him with regards to what he's been doing but I do remind him how special it would be to take a small break for his sanity and physical health. I think he's struggling with both, getting things done he's put off and yes, wanting to spend time with me too.
I will continue to support any decision my husband makes, this is his life and he has the right to do what makes him feel at peace even if I think it's causing him more distress.
I've also realized it's important for me not to feel frozen in time because I think that's where I've been over the past year or so. I can't promise I won't retreat again but I'm trying to work on me too, in order to be a positive influence in my husband's life along with not losing the energy I need to keep forging forward. The thought of losing him has made me feel angry lately and that isn't healthy either. I'm hoping that with new drugs, we will see an improvement and he will be able to do a few things he's not able to anymore. He's not even able to walk in the woods or go hunting anymore, which has been hard on him. Going out into the woods and hunting was his form of meditation.
I wanted to tag a few of you who've stayed in contact since I haven't written a blog in so long. I want to remind all of you what great friends you've been and how much I appreciate so many of you. I won't tag many, I don't want to overwhelm people.
In the mean time, I may be on again, off again.... and that is because life keeps throwing some major curve balls. My thanks to my friends Paul Walters, Ken Boddie Claire L Cardwell Milos Djukic Joyce 🐝 Bowen Brand Ambassador @ beBee , Debasish Majumder and Cyndi wilkins for staying in touch. I left many out but not on purpose.
Cheers and I am putting on my positive cap... that's the glory of utilizing a research hospital, we've found very compassionate doctors who have made my husband's health a priority, I will be forever thankful.