Been A While 

It’s been quite a while since I’ve posted. I don’t have a computer or Internet anymore so I have to use my phone. I am old-school and would rather type so, that’s why I haven’t been on.

Husband’s health:

The sleep study showed that he had stopped breathing 29 times an hour in his overnight study. The doctor said he has obstructive sleep apnea and he now has to be on a smart CPAP machine.

He just had an EEG done and we see the doctors next week to go over the results. His neurologist thinks he has some form of dementia in his frontal lobe. I will find out more next week.

Because of my husband’s breathing problems, he was ordered a chest x-ray and it showed spots on his lower left lung. So far, the doctor thinks it’s emphysema but, she has ordered a CAT scan to rule out cancer or a foreign object. He’s not able to have a CAT scan until June. In the meantime, he’s been put on an albuterol inhaler. He had a breathing test done and it showed that he wasn’t getting a good intake of oxygen. I hope we will know more soon. He has a really hard time with walking around and even can get winded sitting. He’s not overweight, but he is a smoker so we have quit smoking.

Husband’s Birthday:

My husband just turned 39 May 2. Def Leppard and poison came through town and we missed them. Since my husband has never been to a concert in his life, we went ahead and bought tickets to an Alabama concert to see Def Leppard, poison, and Tesla. It was a nine hour trip, but it was so much fun. I got to meet Bret Michaels! As I was coming out of the women’s bathroom he was hanging over the fence where they were doing the meet and greet and say hi to everyone. I took a picture of him and then I called his name so he would look up and I could get a better picture. When he looked up I snapped the picture and said thank you. He waved me over and shook my hand and told me to have a good time.


That is Rikki Rocket next to him! I actually didn’t recognize him at the time without all his big hair. I’m so used to the 80s version of Poison ha ha.

On the way home, my husband’s truck decided to take another dump. We got rid of the truck and bought a car the next month.

As of now, we are sick of Florida. We have news on where we will be living in my next post. It’s been a fun ride so far.

No Air

Here are the results of my husband’s sleep study:  The patient had a prolonged sleep latency. Once achieving sleep mild respiratory events noted. The patient did not meet split night criteria before 2 am. However the patient started having severe respiratory events after 3am.

I am waiting for a call from the doctor to go over what needs to be done next. I am asking for prayer. He, when awake, has issues breathing. He can get out of breath easy just doing light work around the house. I am 5’10” and 227 pounds. He is 5’11” and 201 pounds. He gets out of breath before me. We are trying to find out if it’s his medications, brain, or something else causing this issue.

Comcast/Xfinity Complaint

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On 4/11/2017, after dropping my husband off at his sleep study with the VA,  I called Comcast Xfinity to set up internet and cable TV. I was told I would be paying $109 plus tax a month for both and $15 to pick up equipment from the nearest store to “self install” my services. I was promised on the phone that my services would be ready to go once I got home with the equipment because the last person to live here had services. I paid $100 up front for the services via my Visa debit card and I drove that day to the City Station store in Jacksonville, FL to get the equipment. This was a 12 mile drive and about 26 minutes away. I ask the lady who gave me the equipment if I was ready to go once I got home. She told me I was turned on and just had to plug it all in.

I got home, plugged everything in correctly and….nothing worked. I re-plugged everything in and restarted the DVR and WiFi boxes 3 times before calling technical support for help. The technical guy I talked to told me that I had hooked up everything correctly and that someone would have to come out and turn me on at the pole. He also said I would be charged $60 for someone to come in and hook me up. Please keep in mind that I was already billed $15 for a self install. He said, all I had to do was call in and request a refund of the $15. I was told by this man that someone could not come out until Friday to finish the job.

Since it was only Tuesday, I called 3-4 different customer service agents to get my problem fixed. Each time I called, I was connected to someone in the Philippines who only repeated back to me everything I said and offered no help in setting me up correctly. Please keep in mind I was told someone already had service here before and it should be ready to go. I gave up and left a note with Comcast on their website has a dissatisfied customer. I then called back technical support and was assured that I would not need to be charged $60 because the service was just not turned on at the pole and that someone would call me to set up a time to turn it on. At about 9PM Alex from higher up called from higher up that said someone would be out the next day (Wednesday) to turn me on at the pole and that I would not be charged the $15 for a self install since I had to drive 12 miles to pick up the boxes and do the install myself. I was told that $15 was only charged when someone is shipped the equipment. I was told I did not have to be home, that it was just a turn on from outside. Alex said if I had issues that I should Email him back.

At 2pm on Wednesday, I left to go pick up my husband from the hospital. I saw Comcast outside and thought everything would be fine when I got back. We returned at about 4pm, the Comcast truck was gone and we still had no service. I called customer support who told me no one could come out until next Thursday and that someone had to come in to my home to put in outlets and that I would be charge $60 for this. I already had 2 outlets hooked up, but agreed. I emailed Alex this information and he emailed back that someone from regional would be calling me.

Thursday, while we were getting our truck fixed, someone from Xfinity regional called me to let me know that someone would be out to my home Friday between 10am-12pm to fix my service. I told her that would be fine and hung up. When we got home, we checked our mail and were already charged $133 for Comcast!

Friday at about 12pm a young man who looked about 18-19 came to our apartment to fix and hook up the cable and internet. He stripped the wire coming from my living-room  floor and removed the outlet from my bedroom wall. After doing this, he asked us were the maintenance man was. We told him which apt he was in and noted, after looking outside, that he was not home and they do not work on weekends. When he could not contact the manager and maintenance man, we advised him that it was also Easter Weekend and they’re car was gone. He said, since we were on the 4th floor, he was not installing our service. I told him that was unacceptable as I was paying $60 for the installation! He said to call back when the maintenance man ran the wiring. I told him it was not the landlords responsibility to run wires for the cable company! I told him that, at this point, I wanted him to take the boxes back and to have my $100 I paid up front refunded to me. He said no! I told him I was going to call his boss. He said, “You don’t even know my bosses name!” I informed him that I did, and that I had been working with Alex and regional from higher up to take care of this issue and, because of them, that is why he was here. As I started calling the Xfinity number I was given if I had issues, he booked it out of my home. He left both outlets ruined and my equipment behind. I reported the issue and was told someone would be calling me in 2 hours. I waited over an hour, boxed up the equipment, and drove back to the same Xfinity store I I got the boxes from to return them, shut the services I never got off, and to refund our $100 back to our bank. The man at the store turned off services, took our boxes, gave a receipt showing we returned the boxes, and told us to call our bank for a refund of $100! How is this my banks responsibility??? I called my bank, they gave me a temporary refund, and are investigating this company.

When we got home, I still had received no call back as promised. I called 2 different customer service agents who told me they could not refund my money. The 3rd person told me it would take 4-6 weeks for a check t be mailed! I said, “No! You were quick to take my money, quick to bill me, quick to ruin my outlets, and quick to shut me off….I am NOT waiting 4-6 WEEKS for a refund!” I then emailed regional to let them know what their technician did. I sent them pictures of the damage as well and that I wanted a refund.

I got a call back a few hours later from a man named Ganga who told me he was refunding my $100 and having a technician come out that next day on Saturday to fix the damaged outlets. He got my debit card info to refund my $100 and told me if I had any issues, to just call him back. We have unlimited data on our cell phones with 8GB of wifi to use on my computer if I need it and just signed up for Netflix. We decided, at that point, to just forget about Comcast since we would be moving in a few months anyway.

On Saturday (4/16) a man named Jason Ramsey called to let us know that a technician was on his way to our home. He promised that our outlets would be fixed. I informed him that we would not be getting service and that was fine with him, he just wanted to fix the damages done.  Evair came out to our home, he looked at the damage left and said all the last tech had to do was run it down the wall and set up a splitter in our bedroom for internet and cable. It only took him about an hour to do so. When he was done, he left. 20 minutes or less, Evair called back to let us know that Jason Ramsey wanted him to come back and install us. I called Jason back and let him know I did not want to pay another $100 to get hooked up and that I just wanted a refund. He assured me that I would not have to pay $100 and that I have already been credited the $100. He explained they just wanted to give me the service I was promised and wanted to make the issue right. I agreed and told him to go ahead and set us up. Evair came out and finished the job. We now have cable and internet.

Today, at about 6pm, someone called from regional and told me they would not be returning the $100 as promised because I had service. I told them, “Oh no! I only agreed for service AFTER being promised it would still be refunded after the disaster that took place!” She said she would talk to someone and get his fixed. At this point, if promised are not kept by tomorrow, we are returning the equipment AGAIN and saying good ridden to Comcas/Xfinity! I will go with Satellite TV and Internet before I go with this company! They are liars just out to take our money and run! They will say ANYTHING to get a sale and get you in with them. People, save your money! Get unlimited data with boost and get Netflix or something! Save your money! These guys lie so much!

The Light Was NOT A Train!

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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!

 

 

Better Days?

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It’s been a while since I have been able to write. We’ve been homeless and I’ve been without Wifi. We were lucky to have help with a hotel room for a while, but kept getting bounced around between St Augustine and Jacksonville. 

I’ve secured a good customer service call center job and just moved into a small, studio apartment today. It’s not the prettiest of places, but more peaceful than where we lived in Daytona. A major plus is we have no one above us. 

It’s downtown and not the nicest of areas. We plan on keeping to ourselves for sure! We’re just going to fix up a little sanctuary and forget the outside. I’m sure we can find fun things to do when I’m not working to get us out of the house. 

My husband and I just about split up through this. I’m under so much stress, I felt like just running from it all. As I write this, I’m in the emergency room with a fever and nasty infection. I wouldn’t have come if not for the high fever I’ve been having for 24 hours. I took some Advil to bring it down some and now just have a sweating issue. I’m still in the waiting room just waiting to get this over with. On a good note, I found I can get low income medical insurance through the hospital here. 

I’ll put before and after pictures of our apartment when I’m feeling better. As for my marriage….we have a long way to go. 

In the shadows 

I’m just a veterans wife. I don’t matter. I’ve learned that now from every one. I’m just in the shadows. The only time I matter is when I play the caregiver roll and, even then, I’m a nobody. I’m just the veterans wife. We don’t matter and we’re given zero credit or respect. We are here to suffer in the shadows. 

Another Day

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Today was an interesting day to say the least. My husband’s doctor finally wrote a note for him to help get approved for his pension and SSDI. He is still having seizures so, she doesn’t want him left alone. She said he needs a caregiver until he can get stabilized. He also is not allowed to drive. His diagnosis is partial complex seizures and encephalomalacia with memory loss for the basis of needing a caregiver. Encephalomalacia is softening of or missing brain tissue. It is difficult to treat encephalomalacia. It is not possible to cure, as destroyed brain tissue cannot be regenerated. Treatment consists of detecting the underlying cause and treating it. Severely damaged brain tissue may be removed by surgery. He also has Gliosis of the brain, which is scar tissue of the brain. She wrote he is not to be left unattended because of his seizures. His liver function test was a bit high too, so they are thinking of changing his seizure medication again. She also questions if he even had Bipolar 1 because his symptoms did not start until after he started his seizure medication. A neurologist and mental health doctor will work with my husband and I to figure out his next course of treatments and medication needed. At least we have the paper to help him get his pension so we can pay for rent and bills while he is being treated.

We were approved for housing today and should have something by the end of this week. I am excited, but worried because we have zero money coming in. It’s hard for me to get him everywhere, care for him, and work. I am not sure how I can do both if he is not supposed to be left alone. If his pension does not get approved in a couple of weeks, I have no choice but to find a night job and take him to appointments in the daytime. I will have to work 8 hours at night and care for him in the day in order to pay our bills too. His seizures are mainly in his sleep, so I will just have to pray he will be ok while I am gone.

With all this going on, I have been having major chest pain off and on for weeks. I get pain in my neck and arm too. When I try to go to sleep, I am jolted awake by the pain and have to try and go back to sleep. This can go on for hours every night and has caused me to have sleep deprivation.

Tonight, at about 8PM, I started having the chest pain while just sitting and playing a game on my phone. I took a bath to calm down, but I just felt worse. The pain caused me to go into full-blown panic attack. My husband was sleeping and I had to wake him up to take me to the ER. He didn’t help me get dressed and seemed upset that I woke him. When we got to the ER, he didn’t help me into the building. He stayed behind to smoke. I passed out and someone in line had to help me into a wheel chair. I was rushed in to get an EKG which just showed a faster than normal heartbeat (128bpm). I was given papers to fill out. By then, my husband was by my side and didn’t even help fill out anything or push my wheelchair to the room. He was more worried about being hungry and mad at the staff for walking by with pizza. Is this how my life is going to be forever? No one giving two shits about me? My spouse only worried about him and his needs?

The Doctor told me my heart is ok. No blood clots, X-ray was fine, EKG fine, cholesterol and electrolytes fine, everything is ok. He said I have panic disorder and I need to start taking care of me! He is right! I am going to the free mental heath facility he told me about and going to see a counselor and possibly get on anti-anxiety medication. I am also going to quit smoking and REFUSE to do every little thing for my husband. He only needs driven around and monitored for seizures. He does need reminding of things he needs to do, but I am going to start making him write his own reminders down and have him put them in his phone as well. He can fill out his own paperwork and talk to his own doctors about his needs. If he gets frustrated or forgets something, I will be there to help. That is the only point I will step in and speak for him to his doctors unless I am relaying important medical information I know he doesn’t understand.  He also has issues comprehending what the doctors say and, for that, I will explain everything to him and write notes.

I am not abandoning him, I am just going to make him do the care for himself I know he can do. We did this for patients when I worked in nursing homes. It helps them be more self sufficient, keeps them active, and teaches them coping skills. I am also not going to put up with being called names or taken for granted. He needs to learn that if this treatment does not stop he will be alone for sure. I will leave. I deserve better than this. I have already given up everything to help him. If he continues with this treatment, I am going to go. I just can’t take anymore. I now have panic disorder because of all of this. I deserve to be loved and cared for as well. This all can’t be one sided. He thinks that he gets a get out of jail free card because of his brain injury. He does not. He can’t keep mistreating people and expect them to stick around.

Tomorrow I am quitting smoking and going to the walk-in mental health clinic. I am going to take care of me tomorrow! It’s time I do something to help me for once. I am also taking that walk around town and on the beach that I missed out on today. Of course all this will have to be worked around my mental health needs and our housing needs IF the case manager wants to meet with us tomorrow. I’ll take housing over the beach for sure!

Word of the Day: Psalms 27

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As my husband and I get ready for the day, I felt the need to search for a daily Bible reading. I have been filled with fear the last few days, but trying to trust in God though our trials. I have a job interview today and my husband needs to see his Doctor. I said a small prayer to ask for favor. Favor for getting a good job and favor that my husband will have a good Doctor. When I search the daily Bible reading, this came up. I think it’s perfect for today and I claim it for us.

Psalms 27

A Prayer of Praise

1The Lord is my light and my salvation; I will fear no one.

The Lord protects me from all danger; I will never be afraid.

2When evil people attack me and try to kill me, they stumble and fall.

3Even if a whole army surrounds me, I will not be afraid; even if enemies attack me, I will still trust God.

4I have asked the Lord for one thing; one thing only do I want: to live in the Lord‘s house all my life, to marvel there at his goodness, and to ask for his guidance.

5In times of trouble he will shelter me; he will keep me safe in his Temple and make me secure on a high rock.

6So I will triumph over my enemies around me. With shouts of joy I will offer sacrifices in his Temple; I will sing, I will praise the Lord.

7Hear me, Lord, when I call to you! Be merciful and answer me!

8When you said, “Come worship me,” I answered, “I will come, Lord.”

9Don’t hide yourself from me! Don’t be angry with me; don’t turn your servant away. You have been my help; don’t leave me, don’t abandon me, O God, my savior.

10My father and mother may abandon me, but the Lord will take care of me.

11Teach me, Lord, what you want me to do, and lead me along a safe path, because I have many enemies.

12Don’t abandon me to my enemies, who attack me with lies and threats.

13I know that I will live to see the Lord‘s goodness in this present life.

14Trust in the Lord. Have faith, do not despair.

Trust in the Lord.

Sleeping Beauty

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Last night, my husband was a bit agitated and his emotions were all over the place. Yes, we argued a little, but he calmed down soon after. We have been under stress, so I just assumed he was just overwhelmed. We watched The Walking Dead and went to bed at a normal time.

The hotel room we are in has two, small, double sized beds. With all the tossing and turning we do (and his snoring), we frequently sleep in separate beds. Last night, we tried to sleep next to each other and I noticed he was twitching more than usual. He seemed to be having small seizures again. I honestly had hoped the medication change he had in January was working. It’s not. He got up in the middle of the night and slept in the other bed. I only noticed him coughing a few times and, after making sure he was ok, I went back to bed.

My husband is usually the first to rise and first to go to bed. We had a VA doctor appointment today at 10AM. I got up at 7AM and he was still a sleep which is not like him. It took me a good 30 minutes to get him up and going. He was about an hour late taking his medications because of it and seemed a little dazed. I knew then he had had a seizure in his sleep.

When I got him to the VA, he called his caseworker for the housing and couldn’t even remember who she was or why he was calling. He just said he was checking on his case. I had to explain to her later that he had a seizure the night before and is out of it today. He got blood drawn for routine lab work and the technician noted his blood looked a little thick.

Normally, my husband is ok by the middle of the day after a night seizure. However, when we got home at 12:30PM, he went straight to sleep and slept until 5PM. This is not like him at all and I am a little worried. I had to wake him up to get him to take his medication, which took about 30 minutes to get done. He’s awake now and still seems very tired. We see his primary care doctor tomorrow at 1PM who will set him up with all his seizure, brain injury, and mental health doctors and address the seizure last night.

On a good note, he is begging to go ghost hunting tonight . I told him I think we should just rest today after his seizure incident. I have to do something for work tomorrow at 11:30AM and then we see his doctor, so I think doing any late night fun should be on a night we have have a free day after. I am happy to see him interested in something more than just TV watching, though. This shows me his depression is getting better. We used to take walks on the beach all the time but, after living in such a horrid place for 3 months, we both slowly became depressed and stopped the walks. Living in St. Augustine has been so much fun and so full of blessings, things are starting to slowly look up for us.

We are so excited to move into our new home! We met with our housing caseworker and we should be approved by the end of this week for a place. This hotel is a blessing and we are forever grateful, but it will be nice to have a hot bath/shower. That’s the only thing wrong with the hotel. We have had cold showers since we got here a week or so ago. But, you know what? It’s still a heck of a lot better than living in a truck with NO water, bed, TV, mini fridge, microwave, or bathroom. It’s also a heck of a lot better than living underneath loud, drug/alcohol users. For that, we are blessed.

If my husband is feeling better tomorrow, we will be doing a day tour around town after appointments. I hope to get a lot more pictures and learn more about the town. I am studying for my tour guide test and it helps to put a “face” to a name. I’m hoping tomorrow will be a good day for both of us and am praying for no seizures!

Keeping the Faith

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My husband and I are keeping the faith through this hard time. We are counting our blessings every day. I’m not saying I am perfectly at peace with everything, I am just saying that I am keeping my eyes on God and the prize of a happy ending to all of this.

My husband’s Veteran’s Pension and Social Security is still not decided on, we are still waiting to find out about housing, and we are enjoying our last night in this hotel room.

I have secured a part-time job doing ghost tours in the area and studying to take my required City Tour Guide test. This job will not pay all our bills, but it’s a start. I will be applying to full-time day jobs tomorrow and Tuesday. I have a job I can do in sales, but they may not hire me because I have no address and they are not sure what store to put me at because of this. What started out with a job offer turned into,”We will let you know by the end of the week.”

We were told by our housing case manager that we might have to live in a town that is about 40 minutes from here. I will find out more tomorrow but, if I take a job here and we move 40 minutes away, that means I will have to find a job closer to that area. I’m just going to take any job I can get and pray we can find housing here. Otherwise, I will pay a lot in gas to commute each day. Either way, I need a job now.

Tomorrow we will be in the truck and will be living in it until we can get housing secured. The Veteran’s organization could only pay for our hotel until tomorrow. We can’t go to the shelter because of my husband’s seizures. They would separate us and, if he has a seizure, someone may not know what to do. They might not even know he is having one. We feel it’s better if we just stay together in the truck. We can eat a hot meal, take a shower, and do laundry at the shelter if we have to. He hasn’t been having day seizures and is rarely having them at night now, but I just don’t want to take that chance unless we have no choice.

My husband finally got his medical and mental health transferred to the VA in this area and he has his first appointment tomorrow morning. We meet with his housing case worker after that and then I have 5 interviews to go to. He has another Doctor’s appointment Tuesday and we set up all his other appointments as well. He has to get his sleep study done ASAP, see the neurologist, a psychologist, a psychiatrist, and get back into anger management classes. After his sleep study for apnia and seizures is done, he has to start seeing a speech therapist and neuro-psychologist. I might have to work a day labor job just to pay for his gas to get to all these places.

Looking at his appointments, you would think that this man is so bad that he can’t work. I feel he can. He may be limited in what he can do, but I think he can work doing something if he just tried. I am starting to feel resentment and anger kick in. I do just about everything for us. I take care of all the business, medical, pension, social security, bills, and more. My husband sits around watching tv and smoking. When I am in pain, having a panic attack, or feeling like my heart is messing up (shooting pain in my neck and chest)…he just sits watching tv or he might glance over and ask, “what do you want me to do?” He rarely moves a muscle to help me. Once, my back was hurting so bad I was screaming in pain and asked for a back rub. He was right beside me and got upset because he was trying to sleep. I never got that back rub. His needs come first. This hurts so much! I feel taken for granted and alone. He is able to work when he wants cigarettes. He will go to a day labor place and do construction clean up for a days pay just to fun cigarettes or his gas. He can, therefore, work. When I tell him he needs to find a job, he reminds me of all the medication he is on and appointments he has to go to. When I remind him that he works a couple times a month for smokes and can find an evening job, he then reminds me of how hard I have worked for his pension and social security thus far and how he would hate to see it all go to waste. Am I being too hard on him? Why should I work and take care of everything while he gets to sit around doing nothing. I have to beg just to get a half assed, 5 minute back rub. He enjoys the fruit of my labor doing fun walks around town with me. I just feel so alone and uncared about in this marriage. He’ll even eat up a snack or drink up a whole bottle of soda and not even think so save me any. Conserving food, money, or anything is not an option with him. If this just all part of his brain injury? It also not uncommon for him to get upset with me and tell me to shove things up my ass or fuck off at any given moment. Then, an hour later, he will be all nice and loving. I don’t know what to think anymore. I feel like I am just living with a room-mate that I take care of. We don’t even make love but maybe once or twice a month anymore.

Wow, this post was just going to be about where we are heading and I am now venting. I think I am just tired of holding it all in. I do love him, but feel so taken for granted. I wish he would just contribute more to this marriage. He is capable of making his own appointments, capable of doing some sort of work, able to write his own notes down, and so much more. I need to stop doing everything for him. I don’t even take care of myself anymore. When I do try and care for my own needs, I feel so guilty. When can the world stop revolving around him? His first wife he had in Germany, before he was disabled, said she left him because he refused to work or keep a job. He had no seizures or doctors then. She said he would just play video games all day while she worked. How is he any different now?

Maybe I am just overwhelmed and will feel better once I get us on our feet. I am not sure how I am fully feeling at this point and not making any rash decisions until everything is better with us. I do know that we have been talking about our marriage and he is asking how I feel about things and what he could do better, which is a start. He did say that if we keep getting the run around with his pension and social security, he will go call his employment case worker and see about finding a job he can do. This caseworker works with disabled veterans and can find him work that will not interfere with his disability or appointments. Even if he worked a part-time job, that would help us tremendously. I am happy to hear that he is willing to try to work on us and his career options. I know many people have seizures and brain injuries and work. If his seizures start getting bad again OR his brain damage gets worse, I will understand and support him not working. I will also support it if his doctor puts in writing that he is not able to work. If they can explain to me why he can’t do anything work wise, I will understand. I also understand that he is limited to what jobs he can do now and I am willing to let him take his time in finding a job he will succeed at. I do love him and will always support him as his wife as long as he is making an effort in this marriage.

As I am writing this, we got an email from the Veteran’s homeless organization stating they will be paying for us to live one more week in this hotel. I am SO SO thankful! Things will be ok, I know they will. I am just overwhelmed and feeling a little worried. I got this! We got this! WE can do this! WE will be ok! In Jesus name, we will be ok!

As I was writing this, I also got a call from my oldest daughter. Poor kid (she’s 25 in May) broke her little toe. She was walking around her living room an caught it on a the side of her couch. She heard it pop and knew it broke. As you can see from these photos it is, in fact, broken. At least she got a pedicure first. Poor kid! She’s a housekeeper and so worried about losing her job. I think she will be ok. I doubt they will fire her over something that was not her fault. Plus, she is coming into work anyway, which looks good on her part as well. I know she worries about her job and bills. She is mom, we do that. She will be ok.

 

I want to end this on a cool note. We went on a ghost tour for free through the company I am going to work for soon. I caught something in these two photos that I think my fellow ghost hunters will like. Dust? Bug? Ghost? It was taken at a place were slaves used to be kept and it was not raining. You can be the judge. I can’t explain these photos, but I am not fully convinced they are ghosts either.Yes, I believe in ghosts. I have heard them, seen shadow figures, and seen things moved. However, I have yet to see a full-body apparition. I would love to catch an EVP or photo someday.