Embracing the New in Anxiety and Coping with Newness

It’s been a long time since my last post! Since then, I have welcomed the fact that I am autistic, and have become proud of it. There are many traits that I am still working to embrace, but many of them I have realized are a facet of my personality, always have been, and always will be.

I have been living in a new state across the country with my boyfriend for a year and some months, and have been able to settle into my new life. Although we did have several arguments at first, I quickly realized that these were the result of being long distance; we did not have the chance to have “normal” couple arguments being distance, so they all occurred during the first few months of co-occupancy.

I work at a job that I do not like and barely pays enough to meet my bills. I am in a part-time position working full time (40 hours, sometimes overtime when approved), physically demanding job that pays barely above minimum wage for the state. I feel horrible for not being able to contribute towards bills, but he assures me that it’s okay, especially since we decided to protect and build up my credit. I have been searching for a new job in the meantime - perhaps not as intensely as I should. It has been difficult for several reasons: I am on what is essential socialized healthcare, and it is very cheap for very good insurance. I do not want to risk losing it while in the process of receiving several diagnoses, acquiring a CPAP machine for my suspected (undiagnosed as of yet) sleep apnea, and having just found an excellent PCP. My hope is that she accepts most health insurance so I will be able to stay with her after finding a new, full-time job that comes with insurance.

I just had my new patient appointment with her on the 25th of this month, and felt so overwhelmed with everything that I ended up crying and apologizing several times. She ordered a plethora of bloodwork tests, ultrasound, and a urine test. Almost everything came back negative/normal: UA had trace ketones and blood (currently on my period, so expected); ultrasound yet to happen; blood tests came back all negative except for the PCOS test (inconclusive but leaning towards positive, she wants the ultrasound to be sure), and Lyme being positive. As soon as I got the news, I accepted the prescription for antibiotics and spent at least an hour after my shift trying to find a pharmacy that accepts my insurance and could fill the script. I was able to get CVS to take it (I prefer Walgreens, oh well) and they filled it not long after the prescription was transferred over. Tonight was my 5th dose of 42 (21 days, 2x daily).

I do not have high hopes of the antibiotics curing my disease, as I suspect that I have had it as far back as 15/16 years old, if not before. I am cautiously optimistic that it will fix my problems, but with all of my symptoms, I am definitely in the late stage of the disease and may not ever recover full functionality to my body. This is especially discouraging as I am only 23. I am lucky enough to have minimal neurological/cognitive effects (memory and mood have definitely been affected, although mood may simply be attributed to PMDD). I have a friend who has been diagnosed with and treated for Lyme for the past 8+ years and have reached out to him for support, but have not yet heard back which is slightly disheartening. I have received support from those around me including my immediate bosses (their bosses do not know and I wish to keep it that way unless needed), my mom, and my best friend. My boyfriend has been showing his support through physical (not sexual!) touch and by offering to get me things, etc., but I don’t know that he fully understands the potential future I am facing. He is extremely supportive of me and my future career options, even those that deviate from my degrees, yet he always says “let’s not think about that just yet” when I air my anxieties about Lyme and the very real idea that I may be facing it for the rest of my life. I know many people who have friends/family who have had Lyme for several decades, have needed PICC lines, and even have to receive blood transfusions for it, which is a terrifying thought. Not the idea of receiving blood, I trust that blood banks thoroughly test their donations, but the idea that I may have to do the same for the rest of my life.

Tomorrow I have to talk to my boss about pulling back a bit on my hours/getting two days off in a row (a weekend!!) I do not get them often and I am wary about working less than 40 hours/week as we desperately need the money, but my health is at stake. Being officially part-time means that I do not accrue PTO, only sick time. The unofficial company policy is that you can call out and use about 3 days worth of sick time (up to 8 hours each day) without them asking about it, after which they will require a doctor’s note to prove that you are sick and need the time off. As I mentioned, my boss is very supportive and understanding and is willing to work with me to give me the time off that I need. I mentioned that I may be alright to continue working 5 days a week as long as I can get 2 days off in a row and slightly cut back on my hours. My scheduled hours are not necessarily the hours that I work, as I may only be scheduled to work from 7a-2pm, but I will work 7a-3:30pm to get a full 8 hours per day. If I pull back slightly and work my scheduled time, my pay will definitely suffer but it is worth the cost if my health has the chance to recover. I am counting on the antibiotics working for that to matter; if they do not work I will probably feel like it was for nothing, but I am working to remind myself that I need to give them the best possible chance to work. If they don’t, we will move on to other forms of treatment/care and I will be ok. It can be hard to remember that at times but I have been working on improving my attitude and lessening my anxiety.

Ending on a positive note, I have been working on a diamond painting that I put down months ago - it is of Starry Night and I like it quite a bit! I found I don’t care for the square diamond dotz as they are too tedious to place; too easy to put down diagonally and then you have to go back and fix it, etc. I have finished about 50% of it in the last two days according to my boyfriend and have a very small section left. I am excited to finish and frame it - it has been very relaxing to do in a time of quite a bit of stress.

I hope you are doing well and goodnight :)