Tonight I revisited the basis and foundation upon which I built my blog last summer
HOPE. I have a booklet started with quotations to encourage, song lyrics to keep me afloat when those waves of despair and discouragement come bulldozing down the mood disorder synapses. My antidepressant, a SSRI, had been pretty good at keeping the major mood shifts at Bay when added to the cocktail of meds I take. I am guilty of losing that focus when the cancer diagnosis came. I feel like the day I found out was too soon after my depressive episode to put hope back in my life.
I realized, very humbly and apologetically, I in losing that focus have complained a lot and gotten my blog very far away from what I intended it to be. I, in many ways, had resigned myself to accept that life was probably as good as what it was going to get. I was content trying to manage the pain versus kicking Cancer’s ass out of my immune system. Especially since Christmas, I have been very passive about my approach to everything to do with cancer. Every battle has been harder and I may lose my job tomorrow because I lost my umph and passion there as well. Losing your hope and belief in the future is a pretty scary place to find yourself.
Today, I, (now actually yesterday but I haven’t slept yet), surrounded myself by H.o.p.e. quotes and songs like Swim by Jack’s Mannequin. My goal was to simply make it through til Friday without acting on any impulsive suicidal ideation, especially if I lost my job, health insurance, etc. I had a near fatal overdose in my past during this week as well as lost my mother on that same date and this week has historically been an emotional anniversary date for me to cope with. Now I face possible termination from my job, loss of my health and what feels like a million little losses along the way. I may lose my job today and my health insurance but I will still be here hanging on because the pain at least emotionally will end. I pray the physical pain does too.
“Even rebellions were built on hope.”
Take care my readers. I am needing to sleep for awhile. I am safe. I hope you are as well.
Last week I caught a bacterial infection. It took 3 days for the culture to get back. The practitioner I saw wanted to wait for the results of the culture to start antibiotics. This infection has led to so many things this week I could scream. I haven’t worked since last Tuesday except for paperwork from home. I ended getting IVIG on Saturday and we thought it would help but it didn’t make much impact. I had emesis (a nice word for vomiting) start on Saturday night and continue into Monday and couldn’t get in to see my doctor on Monday. I ended up in the ER by Monday evening for dehydration and tests. They did more tests and cultures on my blood to make sure that I didn’t have sepsis going on. I am still running a fever and feel like death but the preliminary report showed no acute sepsis starting. Yeah! I have pretty much been in bed for a week now. My temp was higher today than all the rest and my doctor is out of the office. The on call doctor is supposed to call…any minute now… It is not fun to go to the doctor as a zebra🦓 (Common Variable Immune Deficiency- CVID patient) let alone one with other issues going on. It takes forever to tell the doctor my hx and I am sick of doctors, hospitals, and illnesses I am ready to revolt.
I supposed to go back to work tomorrow. I am suppose to be calling/ seeing the doctor tomorrow. I still feel wonderful with a temperature. (Yes I am being sarcastic 😜). So I am not sure who will win tomorrow’s battle. Add on top tried to decrease my antidepressant the last ten days, and I am officially certifiable. (Meeting criteria for psychiatric hospitalization.) I jest but have felt quite out of it at times because of where the infection is at and decreasing my antidepressant.
Work is not going well and for all I know, I could lose my job tomorrow as well since I have no more FMLA (a medical leave in the USA for 90 days once every 365 days.) Loss of employment means immediate loss of health insurance benefits. So while trying to function and keep a little positivity, tomorrow might really suck. It feels (not necessarily reality) – just feels- pretty cruddy and lonely right now. I have only vented to two other people so bear with me as whine tonight.
Hope you all are well and enjoying the weather. Tomorrow here is supposed to be really nice. I think I will write a “I am grateful for list” tonight. Weather and Al (my dog) are easy starting points.
I had previously shared that I was going through side effects from the SSRI antidepressant med that I was taking about two weeks ago, my psychiatrist said my options were to discontinue that med, lower the dose of the med by half, or learn to live with the side effects. I thought I was making a good choice by staying on the med but just reducing the dose in half. I was wrong. It has taken about 10 days for my mood to tank and crash. I’m doing what I can to work with my therapist as a number of situational things have happened this week as well. I am a firm believer in seasoned therapists for people who work in the mental health field. We see and hear indirect and direct trauma throughout our day. We need therapists who can not talk shop with us, cut to the chase when we dance around core issues (and, boy do mental health workers have the moves!), and many other things. It is imperative to someone who also has mental health issues. It took me forever to find a good therapist and that I felt like I was actually accomplishing something with and could be totally honest with without any fancy dance moves because I work in the mental health field. I am grateful beyond belief for her.
So messing with an antidepressant (which is taken with an atypical mood stabilizer) is still a bad idea for me. Everyone around me voted to increase the dose back to where it was before because I have so many situational stressors going on that even if I could do it, the timing is awful especially with Daylight savings time starting this week.
I do want to make sure that everyone knows I have a safety plan and I am down, discouraged, and been physically I’ll but have made steps with my therapist to follow that plan.
Due to infection, I apologize for being so scattered in this post. I feel like I took a few 🐰 bunny trails. Hopefully I will make more sense as time goes on.
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 have never been a fan seeing physicians. Since October I feel like I deserve frequent flyer points due to trying to keep infections at Bay and from destroying my immune system. The only thing I dislike more than going to the doctor…is the hospital. It’s full of them.
I woke up with a bump on my head this morning. The last time this happened it nearly put me in the hospital because the infection spread so fast. I am still bald from it even after it healed which took months. I was told to call the doctor’s office and be seen right away. Grrrrr. Nothing like your day getting thrown into disarray. The plan is to open up the bump/lump and do a culture and a biopsy. There is a type of lymphoma that is follicular. I will add these are super painful and I wouldn’t wish them on anyone. So I am sitting and waiting in the doctors office now for the doctor to come in and do her thing. Hopefully it’s not too painful and it will be over soon.
*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 “