Comorbity and juggling multiple illnesses

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.

Wonderings

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?

Wendy

Fear

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.

W L.

Celebrating 100+

Thank you all so much. I now have over 100 followers on my blog. I couldn’t have done this without you!!!!

You inspire me to keep going and sharing even when things are difficult. I appreciate your feedback and support and kind words of encouragement.

Thanks for helping me making this milestone happen.

W.L.

Work

I had someone ask me this weekend how I managed to work while dealing with my mood disorder. I calmly explained to them that I basically started working in the mental health field before I graduated from college and was taught to drop yourself and your issues at the door when beginning your work day when I first started out in the field. It was not an easy lesson to learn but now has become so ingrained in my life that I allow it to spill over into my personal life sometimes by not letting my guard down with safe people. I have to work harder at letting my clients know me then worrying about keeping myself put together. I am assumed to be more serious than I am because I struggle to smile due to having been diagnosed with tardive dyskinesia and grimacing when stressed. I have been assumed to be a witch with a capital B at times because of this. It makes me feel pretty bad because it is so far from the truth. I go above and beyond for most all of my clients. So it hurts when I had the TD happen and assumptions made. I would give anything to not have a mood disorder but they run in my family and I was the lucky one to get Bipolar I Disorder. It took forever to get a proper diagnosis with nearly ten years of misdiagnosis occurring before I got my diagnosis and was put on the right meds. During this time I shared very little with my co-workers and family and it took me almost dying from a drug overdose before people knew I was diagnosed with Bipolar disorder. I do not make it public knowledge but I don’t hide it under a rock either. I suppose one day I will have to retire from the mental health field and do something different for my sanity. I know I have good clinical skills though. When I struggle my paperwork suffers more than anything. I contemplate working in another area of mental health or a different field some days when I am really struggling. I don’t know if it is possible. I would need more schooling to do certain jobs. Some seem overwhelming to even think about. So one day you might hear me say, I am going to do something totally different with my life. You never know…

Tardive Dyskinesia

Tardive dyskinesia is a disorder that results in involuntary, repetitive body movements. This may include grimacing, sticking out the tongue or smacking of the lips. Additionally there may be rapid jerking movements or slow writhing movements. In about 20% of people, decreased functioning results. It is caused by the long-term use of anti-psychotic meds (or some other types of meds such as stomach medications.)

I was diagnosed with Tardive Dyskinesia after being on high doses of two, anti-psychotic medications for several years as my mood stabilizers. I had lip smacking and grimacing that was interfering in my interactions and my psychiatrist did not catch it. When I finally brought it up to my psychiatrist, we had to pull me off both anti-psychotic medications (one quickly and one titrated over several weeks) as we started a new med to stabilize my mood that would hopefully have less side effects. The problem was though that in all of the twelve years that I had been on anti-psychotic medications as my mood stabilizers, no one had ever done an AIMS (Abnormal Involuntary Movement Scale) test to check for tardive dyskinesia.

In my job I attend a lot of psychiatric appointments. I have to say that I don’t see a lot of AIMS tests being done by the psychiatric community as a whole for the folks that they are prescribing anti-psychotic meds for. If you are being prescribed anti-psychotic medication for Bipolar or any other mental illness you should be having an AIMS test done at least once every three to six months at minimum. The potential for the involuntary movements associated with tardive dyskinesia to become permanent is there and if suspected should be followed up on by a Neurologist not a psychiatrist.

Most people with Medicaid and Medicare where I work are still being given Cogentin for involuntary movements which is actually contraindicated for them. There are two new meds on the market for Tardive Dyskinesia…Austedo and Ingrezza. They are very new and very expensive and most people have not even heard of these meds yet. They are for those people who have been having difficulty functioning with their involuntary movements. The National DBSA website has a whole page on their website dedicated to educating people regarding Tardive Dyskinesia. If this is something that impacts you, I strongly encourage you to visit the page to educate yourself and then have a conversation with your psychiatrist or physician about it.

W.L.