It took me forever to learn what the words comorbidity or comorbid meant. For some reason it just did not want to sink in and register that it was having a mental illness in addition to a physical health issues or having multiple mental health diagnoses. Maybe the word morbid being part of it didn’t help. It should have…my physical health issues have a “morbid” twist to them and I tend to make jokes about my CVID and lymphoma…trauma and PTSD and eating disorder not so much.
I probably confuse most of my blog readers because when I started my blog I truly meant to keep it as a social worker’s perspective of living with a mental illness (or two or three or four diagnoses: Bipolar Disorder, Eating disoder, PTSD, and ADD w/OCD tendencies.) I was diagnosed with CVID(common variable immune deficiency) in 2006. I lack 4 of 5 gamma proteins that help you fight infection. One is given back to me by i.v. every four weeks (IgG). This puts me at great risk for cancer especially lymphoma which I was diagnosed with for a second time this past fall. I have included my physical health issues in my blog because they have been overwhelming at times. I am juggling a lot right now in the health department and have managed to get by fairly well mental health wise with a few crashes here and there mostly involving my relationship due to some type of misunderstanding. Physical health issues have been difficult to overcome… pain is a daily stressor as well as fatigue and I am still learning how to cope with these things. It all gets blurred in my blog.
I struggled over whether or not I would share my lymphoma diagnosis in October and I did after avoiding my blog for several weeks. I sometimes feel like I have been put through the ringer. I really just want to spend time with people I love. Some in my life don’t understand this. They don’t get the pain and amount of effort it takes to fight every day either.
So if it seems like my blog is heading in a scattered direction it is because my life has been since last Fall. Bear with me as my life unfolds. I am watching the process with you.
Much love and peace to you all ❣️ W.L.
I shared I went to Jim Brickman concert for my birthday. It was a gift. The giver has no idea of the value. As a little girl, I learned that music was able to help me travel in my mind through a full size organ that I learned to play amongst turmoil with headphones on. I grew up listening to classical, spiritual, and eventually new age piano music. The latter was able to destress me and I would visualize being free of whatever fear was paralyzing me that moment and dance (freely like a leaf being blown softly in a warm sunny Fall Day.)
While I am an eccletic music lover. I turn to piano music for solace and stress management and find myself drawn to hymns played in the new age style of music. Most people might think I’m nuts which is okay because I have been before and I am probably gonna be again… I can rise above the earthly things when I listen to music and visualize myself dancing. It makes my mood improve, it decreases the unbearable pain that my body feels in increasing amounts, and slows my breathing to help me calm down when at the hospital and I hate being there. I wish I were as good a ballerina in real life as when I am floating with the music
I wish everyone could learn to visualize that intensely.
P.s. the highlight of the Jim Brickman concert was when he played a request for my family of a medley of hymns focused around “it is well with my soul “
At times I find myself thinking about death and dying. I’m pretty sure it comes with the cancer diagnosis. I try hard not to stay here for long periods of time. I have been trying hard to enjoy each day I am given as a gift to remember to stay in the present moment and live it to the fullest extent. I don’t know the future. My gut tells me to enjoy life and my friends and family as much as I can now because tomorrow is not promised. It is my gut feeling that I have been having since I was diagnosed. There have been a few reinforcers since then. Telling those around you that you are thinking of death and dying though goes over over like a lead balloon. The questions start pouring out like the third Inquisition They forget all the stats on CVID and cancer let alone Bipolar Disorder. There are very very few people around in life who are able to handle a discussion with you about life and death without freaking out and losing their poop so to speak, especially those who are closest to you. Though I am not a religious person of sorts due events in my life I am a person who has a deep faith. This conversation or conversations may come down to meeting with a pastor to to relieve some of the things I have been trying to process individually with great difficulty. No one ever said that having a terminal illness would be easy I just watch to make memories happen while I am able to. If you have ever had a chronic illness, there is not a day that goes by that isn’t impacted by it. It is a matter of how much you allow it to impact your life that matters. How much does your mental or physical health diagnosis impact your life? How do you decide?
So much going on and so little time to write. 2/4 I received a call from the doctor that they wanted to move my surgery up…to that day. I had a lump removed from just above the knee joint that was making it terribly painful to move and cope with on an increasing basis. So at 8:00, I was rethinking my whole week and how to tell my boss I was having surgery at 3:30 that day without announcing it in our staff meeting which I ended up doing anyways that morning. I managed to watch most of the surgery… I was given the choice to and decided to watch the stupid painmaker say their final goodbyes. The path report was so so. Carcinoma wrapped around scar tissue. I went on 2/15 to get the stitches out but it hadn’t healed shut yet. We’re watching for infection now as the pain has taken a sudden increase again. I attempted (very poorly) to use crutches the first couple of days but it made me so sore upper body wise I quickly she’d them for a cane. Mostly I am limping along now at a pretty good pace. The cane is there when I need it. Thank God for pain meds for when my work day is over. For those who wonder how crazy I am… I went to the pharmacy first thing the day after my surgery to get gauze and bandages and ointment for the wound…instead of telling the pharmacy tech to have a nice day, I told her to have a nice trip…woops. I asked my friend for a ride that day to and from work but still managed to attend a mandatory training for our team. Thursday was harder. Seeing clients on crutches while attempting to carry your work brief case was an insane task! Thank God I had Friday off because I worked Wednesday!!! I was about dead on a doornail but had a full weekend planned with lots of celebrations.
We have survived the polar freeze here this past week with five days of work called off due to weather. Poor Al ( my dog whose nickname is Alcoholic because he can’t hold his licker) even got three new outfits and a set of snow boots to cope with the -40 degree windshield. He looked pretty hilarious in his multiple layers to go outside to do his duties. He wasn’t to sure about putting on his boots though. We have some pretty funny videos of him learning how to get used to them.
Today was the first day we had work since last Thursday but I had medical tests today to investigate two new lumps in my abdomen. I am praying that the tests results come back soon waiting is never easy. The results will determine what type of treatment I do next. Having cancer is scary at times. This has been one of those times. I never know quite what to say to others while waiting for test results so I usually don’t mention anything until I know something. I have been waiting to have a growth removed from my leg. Surgery is set for March. The pain though is growing exponentially and I am on a cancellation list. We may have to switch specialists in order to get it done sooner.
This week while attempting to juggle things and maintain my nonschedule of shoveling, snowblowing and warming up I completely missed morning meds every morning. That means missing my mood stabilizer and amtidepressant as well as medical meds. Knowing and doing are sometimes two entitely different things. So hopefully one day I will learn not to miss any medications.
As a social worker in the field of mental health for almost thirty years, I have had it drilled into me to leave my issues at the door when I arrive for work each morning. Having mental health issues myself over time has made this a difficult enough thing to work with. But now that I have lymphoma it has become a constant struggle on days that the pain is unrelenting or I just am exhausted or not feeling well. It is so much harder to drop myself at the door and not allow clients into my personal life even though they may eventually see it for themselves if I lose more hair, etc.
I know some of my clients couldn’t handle knowing and some could but I really struggle to say I am okay to them when I haven’t been recently. Ethics can be such a complicated thing. So for now I go on pretending to be okay for their sake.
I’m still waiting on prior auths with my new insurance. It seems like it is taking forever. I just want a status report on the lymphoma and to know where we are heading from here treatment wise. it could change a lot of things quickly.
Hope you all are well.
Probably one of the worst fears as a social worker that I have is that I will find one of my clients dead during a home visit. Over the years, I have lost over 30 clients to suicide, murder, illness, drug or alcohol related issues, etc. This week I had one of these scenarios at work but luckily our worry was unfounded when we later found the client safe in the community.
I do not handle death well. Some may say that I am overly attached to my clients but I do care about them and many of them have lost their natural supports over the years. While I hate when people do safety checks on me I sometimes feel the need to do them to ensure that my clients are safe and okay. What are your thoughts on safety checks?
I think I would rather be safe and sorry for caring too much than letting someone suffer for days because I didn’t act. Thank God that this week the client was safe!
Hope you all have a good day.