I’ve not been able to blog for a while due to having no internet. I am happy to report that I am back and have good news. Right before I thought the light at the end of the tunnel was a train, it turned into a rescue mission from God. I have big news and a LOT has happened, so please read this all. *smile*
Last I blogged, we were looking at a studio apartment to move into, I got a new job, and I was in the emergency room with a nasty infection in my leg. Here’s the update on our lives:
The apartment: It’s in a bad neighborhood in Jacksonville, FL where WE are the minorities. The place is run down and the apartment is small, but it includes all utilities and is QUIET! We stay to ourselves and everyone is respectful to us as we are to them. No one harasses or bothers us and we like it aside from the sketchy area. We chose a month-to-month lease and are on a few waiting lists for apartments in St. Augustine. The Veterans organization that helped us move in here with first months rent and deposit gave us a brand new bed and someone else donated a couple dressers. It’s $575 a month here with all utilities covered. We just pay for cable and internet.
My Health: I had to have surgery on my leg last Thursday. I developed an abscess (first one ever in my life) in my left upper groin area. It was the size of an orange. This all started with a small bump that I thought would go away. However, in 48 hours, I developed a fever and chills with a large abscess on my upper left leg. I could hardly sit and was crying in pain. When I got to the ER, the Dr had to shoot the wound with 3 numbing shots. That hurt so bad that I screamed and cried. It was like someone poked me with a needle filled with lava! My poor husband had to hold me down while the Dr numbed me up and then cut my infected leg open. He said that, after she removed a large blood clot, that the fluid from the infection turned different colors as she was cutting into me and draining it. I went home with about 2 foot of wound packing strip in my leg that I had to remove and repack myself each day. I had no money for the pain medication I has prescribed and had no way to fill my antibiotic that I was to take for 7 days. My Grandparents were nice enough to send me some money via Western Union for my antibiotics two days later. I still have an opening and it still drains. I can’t see a doctor until April 25th so, I hope it doesn’t get infected again before that date. I have zero insurance, so I have to just wait to see the free clinic.
The infection on my left groin area is from a condition I have where my sweat glands do not work correctly and become clogged. The pictures I googled for hidradenitis suppurativa are not pretty, nor is my issue. I have had the problem since about 2006 under my left arm. Now, for the last two years, it have move to my groin area. My left armpit no longer grows hair. When I get hot, the sweat can’t go anywhere so, a large bump of puss will form. The bump get’s large, painful, pops, and then just drains constantly. No amount of antibiotics help it. I clean myself in the affected areas several times a day, but that is all I can do. I was told weight loss and quitting smoking will help and I am working on that. The last option is to remove the affected glands via surgery. I was advised in 2015 by a doctor to have the glands removed since all other treatments have failed. To know more about this issue..you can read Q/A and Treatments. I am working on getting insurance back so I can have the surgery needed to heal myself. I also have scoliosis and a herniated disk in my lower back, arthritis in almost all my joints and spine (my upper back and neck are fusing together), and Eosinophilic Esophagitis. I live in pain almost every day and refuse pain meds other than Advil. I also REFUSE to file for disability until I am forced to when I am no longer able to function as a normal human being. I suffer from depression and anxiety disorder as well and am going to seek free mental health care for that. My depression and anxiety are just over the situations I have been through and I know I can overcome them. All I want is to live the best life I can have, while I have it. I don’t and won’t do drugs or drink. I have chosen to start losing weight, stop smoking, and get healthy. I REFUSE to let these above issues beat me!
My husband’s health: My husband had gotten his Veteran’s Healthcare transferred to our area. This is thanks to my many days of calling to get it all done. I got him back into primary care, mental health, neurology, an eye doctor, audiology, and he got his sleep study. His audiology and eye appointments are to check his light sensitivity and hearing from his temporal lobe damage. He is not fully comprehending what people are saying and seems to have hearing issues. Florescent lights in most every building cause his eyes to go red, he get’s agitated and restless, and can sometimes have seizures later in the day/night. His sleep study he had Tuesday (4/11) showed no seizures (he took his meds), but showed he was having trouble several times with breathing while asleep. No seizures in his sleep is normal because he is on medications and is only having sleep seizures a couple times a week. He can sometimes have day seizures that are so slight, I hardly notice. However, they are there. He will just stare off into space or twitch for a few seconds and not even know what happened. His comprehension and memory is getting worse too. We see the neurologist next week to go over all of this.
He is no longer able to manage money now, either. I can have him walk to a store, he will call when he gets there, and forget the amount he can spend and what I just said minutes after talking to him. I now go with him or alone to pay all bills and shop for what we need so we do not over spend and the correct things are bought. My job is now 100% my husband until he can, if possible, recover. I attribute this to the frontal lobe dementia that was found last year in a PET and MRI scan. I am sad to say he will never get better and may just get worse. Only time will tell. Because of his frontal lobe damage, his anger and emotional numbness are causing marital distress. There have been several times the last few months and days that I have wanted to just leave. I feel so alone because he is not fully able to show emotions and I feel neglected and uncared about. He is working on this every day. I just need to be patient and have faith. I know he loves me, but is having a hard time showing it due to brain damage. That leaves me feeling neglected, unloved, and that I don’t matter. Most of my life revolves around my husband and I have to take extra measures to make sure I am taken care of emotionally, mentally, and physically as well. If you Google the effects of frontal lobe brain damage, you will understand where I am coming from. My friends on Facebook will tell you that some days, I throw in the towel and say FUCK THIS SHIT, but I end up staying. I stay because he really is trying. He avoids arguments because he knows that his brain can’t filter his mouth and he will say something he will regret. However, if he is already in “fuck you” mode, it will let it all out. “go fuck yourself”, “I don’t give a rat’s ass”, and “shove it up your ass” are his favorites to say to me. My oldest has been on the phone during these moments. It’s not until I go for a walk to get away from him that he will calm down and come find me to fix the issue. Most of our problems and fights have been over finances. Most married couples have those fights but, to someone with a brain injury, the effects can be worse. I will explain the difference below….keep reading.
I am getting the run around on his anger management, though. After 3 weeks of trying to get him back into his court ordered anger management he was already doing in Daytona Beach VA clinic, I am going to have to go IN PERSON to get something done. I have endured 45+ minutes on hold with the Jacksonville, FL VA only to be disconnected, been told no one knows who does what, OR been told that he can’t get the treatment unless he is a substance abuse user. I am going to have to push harder to get him back into a program that was so easy to get him into in Daytona Beach, FL VA. When he is done with the last 14 sessions of anger management, he is done with and graduates veterans court with no record and we can be free from Daytona Beach Courts for good.
My husband, before he was diagnosed and started treatment for Bipolar and Anxiety, had anger issues. His issues started full on when he started his Anti-seizure medication. Before medication, he was more verbal due to his frontal lobe injury. After medication, he became violent and was diagnosed with Bipolar disorder 1. Due to this, he was arrested for domestic abuse on me. He pushed me into a glass coffee table and was arrested. His actions were wrong but, in fairness, we were just in the VA clinic begging for his mental health/anger issues to be treated the day before this incident. After the arrest, he was given mental health treatment and medication. I think, if he was given help before this, that he would not have to be dealing with veteran’s court today. I think this is all medication induced, even though his doctor thinks it is brain damaged induced. I was told to address this with his mental health and neurologist. I feel this way because he was not showing signs of Bipolar mania until he started Keppra and Depekote. He was started Keppra for seizures and given Depekote for his Bipolar AND seizures. One of them is now hurting his liver and his primary care doctor has urged us to speak to his neurologist about switching to a better treatment. We will do just that next week.
Husband’s Court: When we were going to become homeless, I called my husband’s probation officer. She was not in the office and the person filling in for her listened to our issues and the fact that we had no help in Daytona Beach for housing and gave us permission to go to St. Augustine for help. When we called the next week, my husband was violated for leaving without permission. He went to court last week and did not get in trouble with the judge, but this was salt in our wound! We became homeless due to my job loss, I tried to get us help in Daytona Beach for housing with no luck, was told we could leave to get help that we DID get in St. Augustine/Jacksonville, and was slapped in the face.
The light?: On march 28th, when we saw my husband’s primary care doctor in St Augustine, his doctor filled out an aid and attendance form for him that stated he could not be left unattended due to his memory loss, brain injury, and seizures. I mailed and faxed the Veteran’s Pension department this form. I also was given Power of Attorney for all my husband’s medical affairs. On March 30th, while I was begging for help with money for medication for my infection, my husband was approved for his pension. The pension was only back dated for 2 months payment, even though we filed and they approved the pension starting on January 17th 2017. The pension is for he and 1 dependent (me). His pension was approved before they received his aid and attendance form. Once they approve his aid and attendance (I am his caregiver), he will receive more pension. They have deemed my husband disabled. We have fought for this for almost a year. His pension is non-service connected. We are still waiting on SSDI/SSI from Social Security and a Service connected hearing from the VA. WE have attorneys for both.
We have caught up on car insurance and all other bills with the pension. We are also looking for better housing now that he has steady income. For now, my husband is not able to be unattended. Therefore, I will not be able to go back to work until he is able to be left alone. I miss work SO MUCH! However, we are just going to focus on my husband’s mental and brain health, my health, and our marriage for now. I got his court costs paid so, as soon as anger management is done with, he will be released from veteran’s court and we can be free!