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.
*Warning…blog contains information on meds and sexual side effects.
Tomorrow I see the psychiatrist and we are going to one “of the talks” regarding medications. I was extremely down and depressed as I was being diagnosed with lymphoma and in pain and feeling much more depressed as my endocrine system was attacked and hormone levels were all world’s of whacky. I started Prozac to help with depression and OCD symptoms that had gone untreated for years. My mood stabilizer and was better than it has been in years. But as we were adjusting the dosage, they hit like one big wave…sexual side effects killing my libido. While I am not manic, I have never had to have this kind of conversation with my psych doctor. I don’t consider myself a sex addict or hypersexual even most of the time. (After all, my diagnosis is Bipolar I and I know what that is.) I have spent the bigger part of the last two years fighting hormonal I’m balances and have had to work harder to stay out of dark abyssal periods and have reached a level of stability that was rarer in my youth. With my stability has come a more stable relationship with a significant other who I love very much. And since I started on my highest dose of Prozac, I feel like the sexual part of me is dead like an old, small appliance whose electrical chord has been severed. Nada. Nope. Nothing. It’s probably not that bad but in some moments it feels like it is. Tomorrow I hope to ask for a replacement. I don’t even know what other options there are than the SSRI class of meds for OCD but I feel like I am not happy with everywhere Prozac has taken me. I know I may hear grumbling from the psych doctor but I have decide what adds to my quality of life and this is important to me now.
Tomorrow will be the first time I have really had a chance to talk to the psych doctor about my health and new diagnosis with the Big C. I will have to spend some time journalling before my appointment to condense down three very intense months into 30 minutes. She will listen and ask questions though and I am near the end of the her day.
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?
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.
Sometimes it seems when you have chronic illnesses there is nothing worse than having to switch insurance companies in the middle of treatment. Right now I am in a waiting game because I have new insurance and can’t get the treatment that I need because new authorizations aren’t in place yet with the new insurance company.
During the last few days of my old insurance coverage, they denied auths for scans that would have told me where I was at in terms of my lymphoma. Friday I will finally be able to have my first scan to see if the radiation has helped or it continues to spread and more aggressive treatment is needed. I’m pretty sure of the answer as I have already found a new lump on my abdomen. Sometimes this stuff scares the crap out of me. I just want to be pain free for awhile and not find any more growths.