This week has been and continues to be a scary one. I have been in the ER four times and had six emergency appts with the opthalmologist since Tuesday. I was originally diagnosed with allergic reaction and this was changed within 24 hours of diagnosis to an aggressive infection in my Left eye. I can no longer see through the ulcer and infection on that eye. It is just one big blur that has remained in intense pain in light or added pressure from bending over, etc. I am putting in eye drops every hour on the hour to attempt to fight the infection. In the words of several opthmalamologists now the matter is serious and my eye sight at risk. The pain is excruciating and because of the opiod crisis the opthalmologist was not willing to prescribe anything. I have finally had enough and am returning to the ER to get pain meds today. I hate the doctors new fear of opiods. Praying that my sight returns in my left eye soon. Much love, Wendy
This week marks the one year anniversary of my blog. I still struggle to balance my time between work, treatment, recovery and rest. The past few months have brought a job change that is less stressful, continued treatment, and continued work towards recovery. This year has been a year of progress in so many ways. It has had some major challenges and set backs at times but my mood is so much more stable, I have been in a stable relationship for nearly a year now, and have a more stable med med regimen. I have also slowly been learning to accept my weight and body shape at whatever weight or shape I am at. I am grateful for so many things.including all of my followers and their support.
Thank you for a memorable first year.
Being my rather OCD self, I went to the library in my hometown to look for the most recommended books on habits yesterday. Once I set my mind to something I become pretty determined to accomplish it. One specific book, recommends focusing on one task at a time to change. Right now I have about 30 times that on my list. I went to the dietician today for the first time in months to talk about goals. I had a list of seven when I walked in the door to meet with her and was able to explain each one and the reason behind them. They are prioritized so I know which ones are the most important to focus on and there are some that are simple like making phones calls or completing labs. The dietician didn’t seem to think I had lost all my marbles but a few of them were rolling through the Kerplunk game a little faster than normal this week.
I have spent some time time contemplating the one vs multiple changes occurring at the same time the last 24 hours. I am left with “radical recovery.” I think of several people who I know who made the decision to finally get clean or sober and did 90 meetings in 90 days and basically overhauled their lives to maintain their sobriety. When I think about making changes to my life, that is what comes to mind. Most people in mental health recovery don’t have the type of support offered by AA or NA meetings. The closest thing we have here is a Depression Bipolar Support Alliance (DBSA) meeting once a week for people with mood disorders and their supports. I do have supports in my life who would support me if I shared I was making major overhaul changes though. Probably more than I realize.
In order to make multiple changes at once and be successful I have created a list of things that needs to be a priority or commitment to eventually succeed because I am not delusional. I realize I may fail at some, hopefully succeed at some and make progress at other goals.
Change toolbox for success
- Make health and exercise a priority
- Persistence and perseverance
- Not afraid to fail
- Take full responsibility for my life
- Create my own morning routine
- Have a support system
- Takes initiative
- Surround yourself with like minded people
- Communicate clearly
- Good listening skills
- Value alone time
- Discipline and self control
- Follow through with what you say (no excuses, only results)
Love the journey more than the results.
I know I might be dreaming but I made the choice to change some key things in my life pretty radically and the only way to be successful is to follow this list.
I have been struggling with depression still and re-evaluating my goals and self discipline that are needed for me to achieve and accomplish my goals. In light of recent events I have been trying to decide what my values are at this point. It seems like a daunting task on some days.
Re-defining yourself in the wake of what could be a terminal illness is scary. Old goals seem obsolete and unimportant. Working for money’s sake does not seem to be such a priority. Wanting to spend time with loved ones and be in the best possible health does. Spending time doing a meaningful career seems much more important. Spending time doing things I love feels more valuable than time fillers like watching TV. Getting rid of clutter is essential. Doing my bucket list more pressing than before.
I don’t know if I have shared that I have taken care of others for most of my teen and adult life. I am feeling like I’m kind of over it right now. I need to take care of me and frankly I don’t think I have been doing well at it. Harsh reality check.
So you will hear me blogging on self discipline and change and goals for at least a month ( it takes 21 days at least to start a new habit.) There will be word art (I have a new app on my phone and a new printer), regular art, goal setting for short and long term projects and other happening things.
Take a trip with me and see where we go. I may face the world jobless this week but I am trying to believe that may not be a bad thing.
Be blessed on your own journey’s my friends.
Well, I have to have a release to work to return to work. I couldn’t go in anyway because I still have a stupid fever which keeps spiking up high and then will go back down to a low grade fever. It wouldn’t be too bad, but my leg hurts really bad today. It has been the most painful process of the last four to five months. So not fired yet. My mood is better today. I, also, chose to reinitiate the larger dose of my antidepressant for now. I can try again in the summer if I want when we have good weather and I can get out and exercise every day.
So, for now I am waiting on my doctors office to call me back and speak to me about how cruddy this undulating fever is as well as the pain.
Peace and gratitude be yours today
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.