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 “
I started my day at 3 a.m. with a shower and getting ready for an arrival time of 4:30 a.m. for a MRI with a half hour drive from home to the hospital. Now you know the arrival time is early when you have to buzz Security to let you in an American hospital. Too often they are more than willing to take your money for the testing. Our big hospitals here schedule tests 24 hours a day 7 days per week to get the tests done. I have a habit of getting assigned graveyard shift (12 a.m. -6 a.m.)
I remembered most things but kind of forgot a few important things. With MRIs there is always a form to fill out regarding pain, surgeries, etc. Forgot to add my most recent surgery…oops. Only kind of pertainite considering I still have stitches inside the tissue above my knee. Hopefully tomorrow I will be able to hear the test results. Waiting is never easy
Maybe tomorrow I will be able to hear the test results. Waiting is never easy. It always takes by far more time to wait than to have the actual test
I would say let’s hear it for good news. I’ll settle for ok news on this one.
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?
My eyes are leaking (crying) and my brain is saying “ENOUGH.” I want a break from February and how it’s gone so far already…surgeries, complications to those surgeries, car problems, being away from home and Al temporarily, being at the hospital more than I can stand, and feeling confused and alone than I have in a while.
I find myself turning to old coping skills to get through long days that others.dont really understand like using my phone to play games to dissociate with to escape the pain, triggers,and all the medical stuff coming at me day in and day out. I’ve lost 7 pounds in less than 2 weeks. Stress and food are old allies in my history. It’s a slippery slope right back into old habits. Right now a path that could be more dangerous than usual. I find myself wanting things to return to precancer moments. I don’t want to stay stuck in this space because I don’t believe in feeling sorry for myself or getting pity from others. I do desire to make the most out of each day and I wasn’t able to do that on my own the last few days with doctor appointments, tests, hospitalization, car problems, etc. Add a dose of feeling alone in the mix and I plummeted to the places that I didn’t want to go.
The saddest thing is that today I pushed people away and hurt people who love me before I could be hurt 💔 Sigh. I want a shower and clean clothes and my sister right now
I have 9 hours before the tests start again which means getting up and ready to go even earlier. Praying I can restore my attitude by then. Thanks for listening.
Three days after my surgery, was my 50th birthday. It fell on a Friday and we had plans for Friday, Saturday, and Sunday get together with family and friends. Add in a dose of much needed IViG and it was a happening weekend. We got to see Jim Brickman in concert which I enjoyed a lot. I missed a funeral due to needing an IViG treatment badly but had no choice. It was a must after surgery.
I felt down by my birthday. In a world we live on social media, I miss plain old phone calls, surprises from my family at work etc. I felt like it was a big deal to me that I made it to 50 this year. However, all my friends wanted to celebrate individually and I just didn’t have the energy for it. I feel bad for feeling disappointed. I never thought that I would make it to 50. I have been so suicidal at times and then came cancer. Is it wrong to want to celebrate living while I can? I guess other people don’t understand that or don’t want to. It makes it an awfully lonely place to be. Sigh.
Having cancer sucks. Wanting to live the most each day possible becomes mantra because you never know when things will come to a screeching halt. I guess its my fault for having such ecclectic friends. Asking them to put themselves in a room together is not easy even if it is for me. I am not a narcissist. I am afraid I will die alone of this lymphoma thing because no one was able to be there at the right time. I just want to spend my time left with loved ones building forever memories. I want to laugh until I have tears running down my cheeks. I want pics, memorabilia, etc.
Am I silly? I feel like I am right now. I don’t talk about how bad the cancer is because I have had one person not believe me even, etc. That was offensive more than anything. I felt very angry afterwards.
The hardest group of people to get this across too is my family and few close friends
Oh well. We cannot control everything. Despite our measly attempts to try.
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.