Long time no blog.

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Hi. It’s me, Dani. Long time, no blog.

This month has been very multi faceted for me. A lot of layers and intricacies. Like an onion.

My depression hit hard near the beginning of the month. I was in tears by the end of every evening.

Then I got a bladder infection. Then a kidney infection. Then I had no infection at all. But the pain persisted. Everyday I would acquire a new symptom.

About halfway throughout the month my mother said she didn’t feel well. I mean, the signs were clear. She wasn’t leaving the house. She became very quiet.. She hadn’t’t bathed in two days. She said, “It’s getting bad again.”

I knew what she meant and how she felt.

I spent days on the phone with her doctor trying to get her in to an appointment. All of the sudden, her wonder drugs, her tailored cocktail, was no longer working. She did not want for this to go on any longer. I don’t believe she was a danger to her self. But sooner or later, that decision, that choice to ask for help, wouldn’t be there much longer.

After my sister, dad, and I took off work that week to watch her around the clock to ensure she was never alone, her doctor’s appointment finally arrived. They upped her meds that took effect immediately. Not lifting her out of paranoia, but turned her into a zombie. Even today, she barely leaves the couch, only alternating from sitting up and staring into space and then to laying down and blankly staring at the TV.

For those of you who don’t know, my mother is schizophrenic. She has suffered from symptoms most of her life, but was not diagnosed until 2017. She was put on a few different medications and she went from 80 pounds back to a normal weight, seemed happier, would go out and do things, and was active in the community.

However, this past month and a half, she has been staying home more, less talkative, less energetic. She would make subtle comments to me that she didn’t feel like her normal self. But there was nothing I could really do until about three weeks ago when she admitted she needed help.

As of today, her symptoms have not gotten any worse, but they haven’t gotten any better either. I feel like she isn’t receiving the help that I think she needs in order to return to baseline. I don’t think hospitalization or inpatient services would help her in this case. She is afraid to leave the house and that would be one thing; she doesn’t have to leave the house to do much anyways. But the fact that she cannot be alone… well, let me clarify. She *can* be alone, however, she does not want to be and it heightens her paranoia. My dad works 80 hours a week and is only really home on weekends. Not only am I I going to school, but I work two jobs and cannot miss any more work because I have literally no leave on the books. My sister has been helping out when need be, but she is married and has her own life to live. I don’t have the answers to this particular issue, but having someone stay with her around the clock is not feasible any longer…

As for me, my physical health and mental health are both in the toilet. I mean, my mental health has been in the trash for a while now, but undergoing the stress of taking care of my mother once again triggers the trauma response in me by putting more pressure on myself to take care of her more than I do myself and putting unrealistic pressures on myself.

As far as my physical health, since August 9th, I have been experiencing infection and a bladder disease flare up. I have been to the ER three times, my urologist at least four times, and have called in to my doctor nearly everyday because my symptoms are progressing. Of course, this started out with extreme UTI symptoms because, news flash! I had a UTI! I was put on antibiotics and my symptoms progressed and was then diagnosed with a kidney infection and given different antibiotics.

However, after being on the second antibiotic, I developed a rash on my belly and became very itchy everywhere and had allergy symptoms such as congestion, cough, fever, severe chest tightness and chest pain, etc. I was switched over to a third antibiotic and in my last bloodwork panel, my kidney functioning had reduced greatly. Usually you want a GFR kidney level of over 90, which for six years with interstitial cystitis, I have had. But on this most recent bloodwork, my GFR level was 71.

To give you some perspective, above 90 is good or normal, 15 or below means kidney failure. 60 or below indicates there is something wrong with my kidneys or may be the beginning of kidney disease.

This last week, my doctor has not been in the office and since going to the ER again was not an option, I went back to work on Wednesday, August 25th. I was supposed to work my 12.5 hour shift. About halfway throughout the day, whispers spread amongst staff that the nurse that day had tested positive for COVID-19. One of the gals I worked with was sent home because she was not vaccinated. I, however, despite feeling all the kidney, flank, abdominal, and pelvic pain in the world, also was experiencing these covid like symptoms that I originally thought were allergies.

Once the admin people came in because the supervisor that day had also gone home because she was not vaccinated for the virus either, I was sent to get COVID tested at the ER because I had not only covid symptoms (not to mention I have severe asthma and I am an everyday smoker), but my kidney issues had not resolved.

So Wednesday night, they tested me for covid and a bunch of other illnesses as far as my pain went. My covid test was negative, but I was told to quarantine until Monday, August 30th and that was the earliest I could return to work. As far as the tests for my mystery illness, they did not find any answers.

As of this point, I felt defeated with the severe pain I mentioned above, still have this severe rash and itchiness, I have severe UTI symptoms and related symptoms. After two ultrasounds, a bunch of bloodwork, a lot of UA’s, no one can figure me out. I mean, it could just be that this is an intense flare up in my chronic illness and this pain will be my new reality, but I just don’t understand why my treatment thus far was working just fine up until now and for what reason? If there is different treatment elsewhere, I will take it if needed.

I was retested for covid at a local urgent care Saturday and that test came out negative and I just have some bug that is apparently going around.

Not to mention the fact that university started for me Monday, August 23rd! This is supposed to be the most exciting time of my life, yet I am faced with the above physical issues, my mental health has been put on the back burner, I am constantly contemplating how to help my mentally ill mother who isn’t getting any better, I have missed THREE weeks of work, and now at the end of my second full week of school, I feel as though I am spinning my wheels and nothing is being done.

As far as the first week went for school, I completed all of my work on time and out of the three graded assignments thus far, a 92% has been my lowest grade. Granted, it is now only the second week of a sixteen week semester, but hey, I gotta take pride in my work in everyday that I can.

On Monday, the 30th, I went to the urologist for the firth time that month and I received antibiotics for a bacterial infection that was caught on this special urinary test that no other testing has caught. I have been on the antibiotic now for four full days. My flank, kidney, and pelvic pain has subsided which is outstanding because that was the pain that was keeping me from working originally. Tuesday, I called my places of work to confirm that I was good to return to work after the covid exposure and then receiving two negative covid test results.

I returned to work Wednesday and the shift went remarkably well. Same for yesterday’s shift.

Today (Friday, September 3rd) I got up at 4:45am because a) I couldn’t fall back asleep and, b) I have a ENT appointment to address my obstructive sleep apnea. I have a feeling that this will be more of a surgery consult than anything else because my cpap machine isn’t helping me because I can’t keep the damn thing on my face. Now mind you, I have the full on face mask so it’s a bitch to get off but I somehow manage to wrestle it off my face so I am not meeting the required time each night to wear it.

Like I have mentioned before, the thought of having yet another surgery sounds absolutely terrible. However, if I can get more restful sleep that would be wonderful. For the initial time that I did use the cpap machine and did not rip it off my face, it worked miracles. I was well rested and didn’t need any caffeine to function.

Because I am working two jobs and a full time student, I take 100mg of modafinil which, for lack of a better word, is similar to a stimulant and I consume about 16oz of Red Bull in a day. I am still suffering from extreme fatigue though. I am hoping that if I do need surgery, it is effective and I won’t be nearly as miserable.

Well. That’s it for me at the moment. I am hoping to blog at least once a week so that I can recap life happenings and focus more on mental health as far as content goes rather than rambling out a long post like this where it isn’t very cohesive and I know that there is a lot of detail that has either been omitted or forgotten about.

Much love to all of you! Thanks for reading.

Dani

2 Comments Add yours

  1. fishrobber says:

    I’m sorry to hear about your mother. My daughter’s mental health is slowly going downhill also, and she won’t do anything about it. I try to help, but she doesn’t want my help..

    I use a CPAP also. I’m curious why you keep taking it off. Is it something you do involuntarily during the night? My problem is that the head gear wears out too quickly and the Velcro won’t stay velcro’d so the mask fits too loosely unless I tighten it so much my face goes numb.

    Liked by 1 person

    1. I thrash around a lot in my sleep and even though I have the full on face mask, I end up taking it off no matter how tight the Velcro is. I have tried setting alarms to wake myself up to try to put it back on but it hasn’t helped yet

      Like

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