Family Sucks, People Suck

I pay my step sister to bring my girl’s home from school and today she is sick so she can not.

My sister is just sitting at home and refuses to help, the same with my brother. I could call the kids out earlier so that picking them up wont interfere with their days but nope, no can do. They can’t ever help me. I feel like my family just sucks.

My mother is actually taking off work a little early to get them today. This is the first time ever. She has let me know that it is a one time thing and she can’t do this in the future.

I would just walk up to the school if my back wasn’t fractured and giving me this much pain. I might even attempt to walk up there once it warms up.

Right now its super cold here and there is snow and ice everywhere. My son with Sensory Processing Disorder will not walk in the snow and its next to impossible to push a stroller through the snow and use my walker. I can’t even do it with my cane.

Today my littlest can’t stop puking. Leaving the house is not really an option.

I need to get a cheep van. Then I won’t have to rely on anyone and I can just go drive to get them.

Everyone says make them walk but it’s too cold, they’re only in kindergarten and first grade and my first grader is type one diabetic.

This is getting hard. I am making a go fund me to help with a van. I don’t need anything pretty just functional that has enough seats.

 

https://www.gofundme.com/b3j6u2-needing-a-vehicle

 

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So I Got Denied SSI

Awhile back I had applied for Supplementary Security Income. I am disabled and have many health issues going on.

Part of my back is broken, an ongoing skin disease which every flare hurts like death (HS), fibromyalgia, bipolar, depression, PTSD, anxiety, RA, PG, severe asthma, and just so much going on.

I can hardly walk through my house to use the restroom.

I can’t really reach to wipe my own but without the magic wand because of the inflammation in my spine.

I can not drive because of all of my meds.

I have to be mostly reclined with my feet up most of the day.

I was Denied.

The letter states that my skin disease that will never go away has healed, that I can walk enough to have a job, that I can sit in a desk and that I do not qualify.

I have not been seen by one of their doctors only by a one of their psychiatrists.

My doctor says that I am disabled.

I have a cane and a handicap placard.

I am planning on contacting a lawyer on Monday. I think that this is unfair and I qualify in more than one way.

So As Everyone already knows, I Have Health Issues

Well two more teeth broke last night. I shouldn’t have accepted the kettle corn.

Before the pyoderma gangrenism started, before I fractured my back, before I got really sick I had tons of dental appointments scheduled to pull all of my broken teeth that have been drilled and filled over and over. I grind my teeth in my sleep and gag on the mouth guards. The plan was to get partial dentures.

Now I can not have any teeth worked on or pulled for a whole year after the pyoderma is treated misdiagnosis are confirmed.

This just adds to my list of pain.

If I didn’t have the PG I could have my pain treated and be in so much less pain.

I didn’t have dental care until I was an adult. The first time that I went to a dentist I had multiple cavities. More and more teeth began to fall apart after each pregnancy. As I started to get sick and just kept getting sick all of my teeth began to crumble.

Some advise; always take care of your teeth because they will hurt so much later if you neglect them. Also take your children to the dentist so that they can receive proper dental care.

All of my health issues stacking on top of each other are seriously making me feel like I have lost control, like I am losing the battle and nothing is getting better. I am happy that I have my husband and children to get me through this, I don’t know what I would do without them.
Here is my gofundme if anyone can help out. Thank you for reading.

The Spine Doctor: A Surgery Is Needed

Today I went to see a spine specialist. I have all kinds of stuff wrong with my back, I already knew that. So far what has been found out is; Lumbar Spondylolysis, Bilateral Sacroiliitis, Lumbar Raduculopathy, multiple degenerative disks, pars defect, a L5 fracture, slipped disk, herniated disk, and nerve damage.

Also we found out that I have arthritis in my pelvis. That explains some things.

With all of the issues at this point the only way to get the much-needed relief is a surgery, spinal fusion surgery.

This surgery will help in the long run. I will have probably around a five-day hospital stay The first six weeks at home will be a painful period with limited movement. After the first six months I might have relief and be able to move around and be in less pain.

I am really scared to have a surgery like this done.

I will not have the adequate healing time after because my husband can’t take off six weeks of work. My sister can take off the time period that I will be in the hospital and she can care for our children. My husband can take off two weeks from surgery but not much more. I am looking into child care assistance to help with the first few months after because I wont be able to lift my children or really do much around the house.

Right now is the time period to figure it all out. So far my sister can help, my sister-in-law can come help one week, and my other sister-in-law can help random day s around her schedule. My parents do not help with these kinds of things often and my husbands parents aren’t living.

This sucks but the positive to it is that I might have relief six months out from surgery.

(Still Behind On ALL Of Our Bills and It Sucks

I am so far behind on all of my bills. We are making minimum payments so that we can still have food on our table and a roof over our heads. We can not mess up our lease by missing rent, so that is the only thing that we are up to date on. It is really hard to find a house in our town and we can not downsize with our large family. We currently live in a 2 bedroom house with an extra room that has the furnace and water heater inside. My husband and I have this make shift bedroom. At least we have a roof over our heads.

We have been homeless before due to employment issues then credit issues and I can’t do that to my family again. My husband has a great job and everything was all good until I got sick.

We will qualify for heating assistance through the winter which will keep our electricity from being shut off. We are still struggling on water, car payment, and phone bill.

When we got the van that we have now we were forced into buying a vehicle. I had driven two and a half hours away with the kids to visit my brothers and my van engine blew. (Back before I broke my back and could still drive.) It was over a decade old and had an oil leak but I really wanted to see my brothers and the kids received free event tickets to dinosaur quest that happened to be where my brothers lived. I made it close to their house and then the engine blew. I was able to cram the kids into my brothers truck and I rode in the back just for fifteen minutes to get to their house. I had my van looked at and had absolutely no money. The engine was broken so bad that it couldn’t be repaired. I was stranded two and a half hours away and couldn’t have my child ride in the front seat of an old beater truck for two and a half hours and I couldnt make it in the back for that long on the highway. At the time his truck wouldn’t make the drive out either.

So while I was stuck my husband was stuck trying to find a way to bring us home. We only had one vehicle because we had just got on our feet. His work was right across the street from where we lived and he could walk so he did not have to miss work. We did have to come home because the three weeks being stranded was way too long for my daughter to miss work and my brothers could not afford to keep feeding the kids and honestly the kids eat a ton. He went everywhere to look for a vehicle with a 0%down plan. He found a pricy plan. We got a used Kia Sedona and it would cost us $180 every other week and then we had to have full coverage. Full coverage turned out to be extremely expensive, $195 a month. Well there is almost $600 extra a month out just to have a vehicle.

That was last November. We are now stuck with this van for the next 5 years unless we let it go and get it repossessed, even then we can’t be without a vehicle. Payments are way too much and we can not save anything to buy anything different because there is nothing left to save.

So now our bills are way too much.

BILLS;

$700 rent

$150 electric

$140 water

$100 phone

$195 car insurance

$180 x 2 sometimes 3 for van payments

GRAND TOTAL: $1645

My husband only brings home about $2000 after taxes.

That gives us $355 after we pay our bills. If we pay on them. So far everything is behind because we can not afford anything.

Food is expensive for a family of 6. My daughter is diabetic so she needs things that insurance does not cover. We need about $100 a week for gas to take my husband to and from work now that we moved, to take me to all of the doctors that I see every week, my daughter to her endo appointments, my son to his appointments, the kids home from school, my ER visits and then our trips out to get groceries.

We do get food assistance, a womping $280. It helps but does not get us more than a week and a half of groceries. There is a local food pantry that we can visit once a month and it helps but it does not last either.

I clip coupons, budget and always shop the sales for groceries. Even all of that isn’t enough.

I am waiting for disability to kick in. I am certainly sick enough and have enough chronic conditions and pain that I qualify but the process takes at least a year where I live.

I have to somehow make it to May 2018.

I don’t know how I will do it. My husband wants to get a second job but then I would have no way to get to appointments or to get the kids home from school.

I wish that I could work but I can not pass a work physical to even try. I am at risk for falling because of the spinal injury. I am simply not qualified to do much. I started college but had to put it on hold due to health issues.

We are just in a slump.

I Really NEED A New Sleep Spot

I have been sleeping on the couch lately for two reasons. One being I can not make it to the bathroom. The nerve damage is just too bad. Sometimes I don’t know that I need to go to the bathroom until I already start going. Second is because I can not get up from my bed. I get too far from the edge in my sleep and can not roll off to lean over to stand up.

My back is hurt so bad that I can’t get comfortable anywhere. Last night I tried the floor so that I could cuddle my husband. It was a bad idea, what was I thinking? If I can’t get off my bed why in the world would I be able to get up off of the floor when I start to go to the bathroom and need to clean up?

So the couch is my sleep spot. It is super uncomfortable and it sucks. However there are two things that make it better, I can get up off from the couch and with it being leather I can wipe it down if I soak through my clothes.

I have issues with falling asleep anywhere. I am in so much pain that I basically stay up until I drop. I have horrible anxiety at night-time. I often worry about falling asleep and not being able to get up in the morning, having an accident, how much more pain I will be in when I awake to the meds wearing off, ect.

I need to find somewhere more comfortable to sleep because that would relieve some of the tension pain. I can’t sleep on my bed because It is flat and I can’t get up from it. I can sleep leaning on the armrest on the couch at a slight incline but it is such a hard surface that I still hurt all over while I lay there. There is no being comfortable for me.

I am starting to feel that I might I need something to knock me out and give me a better quality of sleep as well as a new sleep spot.

I am thinking that I need to find a soft recliner. I have some thick crib covers that protect the kids beds, I could always lay one underneath me if I get a new sleep spot. If I get a recliner I would be able to control the recline without walking to the kids closet and steeling the guest pillows. I would be able to put my feet up and alleviate some of the knee and hip pain. I am looking all over for used ones that are almost free or free but every one that we have found has either had owners with animals which will not work for me because I am allergic to pet dander or cigarette burns with the lingering smoke smell which wont work either because of my asthma.

If I could afford it I would get a bed that moves to recline and lifts under the knees.

That option is not really one I see in my future. I am part of a family of six, our daughter is diabetic and my son has many issues going on with sensory and some other things, We live off of $30,000 a year if my husband does NOT miss ANY work. He has had to miss so much work to take care of me on my worst days, to get me to appointments (because most of the time with specialists they tell you when you need to come back due to their full schedule and wait list), to frequently take me to the emergency room when things get way to out of control to deal with on my own, and also to get the kids to everywhere that they need to go (appointments, clubs, school, ect)

My husband is the only driver in my home. We can’t afford for me to take cabs to appointments and if we did take a cab I would have to haul car seats and most cab companies only have cars, nothing with enough seats or room for four carseats. I can not take a bus because I live in a small town and we do not have busses. If I did find my own way to the ER I would not be allowed to check in without another adult there to care for my children. I wish that self driving cars were cheaper because then I could at least take the kids to their appointments and all of their other things that they go to.

Something has to give eventually.

A Little Health Update; Could This Be Cancer?

I DO NOT HAVE CELIAC DISEASE, the GI had convinced me that I had it then they did the blood work and I DO NOT.

I now have to go in to endoscopy in the middle of November and have a scope go down my throat and take samples the way back up from my lower intestine.

We are looking for CANCERS because something is causing the Pyoderma Gandrenousm. Also the GI informed me that my normal for bowels and eating habits is in fact not normal at all. I have liquid stool most of the time and usually am only able to keep down one light meal a day and some crackers. I guess it’s not IBS like diagnosed before if its constant. She still said that I have IBS but there is also something more going on.

I was hoping that It would be some disease, cancer will be a bad diagnosis and I am not sure how my husband would take that. He is already going through so much with all of my other chronic illnesses and my chronic pain.

I have been waiting for months to get in to see all of these different doctors who are all trying to put the puzzle together. I have at least two days a week with appointments all day and then other appointments around my husbands work schedule. I can’t drive.

My back diagnosis is that I have a slipped, fractured, herniated bulging disk and I just really need injections to bring down the swelling. They finally believe my pain, I am not just some 25year old, looking to get high. I take only what I need and honestly I feel like I need more at the end of the day. I am in major pain, if I did not have my family I would probably be staying in the hospital continuously for pain management and treatment.

I will require surgery if the swelling is not contained. The back doctor/ pain management needs clearance from the CIC to do an epidural. It could take months for them to see me. So far they keep telling me that I need to be seen here or there first because something is mostly the underlying cause of the pyoderma. So more than likely I will have to have spinal surgery after the PG is treated.

I am in the largest circle jerk of doctors while my health and sanity are deteriorating. I am being sent back and forth and told that some other doctor will treat this or that. I need to have better control and find my voice and make a doctor get on top of all of this or I am going to die waiting.

I have a gastrointestinal doctor, Pain Management/ spine specialist, Rhumatologist, dermatologist, Neurologist, Breast Specialist, Physical therapist, Therapist, and I see my Primary all of the time. I am sure that I have seen others but at this point I can hardly keep their names and faces straight.

I filed Medically Exempt and Medicaid confirmed and authorized it. I am supposed to have a team of people on top of my health stuff and have been calling every day and told that someone would contact me for the past month. The team is supposed to consist of a crisis person, a doctor, a 24hour nurse, and I think someone else. I am also supposed to receive help with transportation so my husband can miss less work. We are really struggling.

With the PG I can not have any surgeries. Did you know that a tooth extraction counts as a surgery? I can not finish my dental work, can’t have them start anything new for the nest year. I was planning on getting on top of things before I got so sick. I wanted to have the Gastric Sleeve done, to get my tubes tied, my tonsils need out, and I was planning a breast reduction before it exploded.

All of my doctors have diagnosed so much but none of it is in the list for possible PG causes.

I am sick of all of it, I am sick, I am tired and I just want to get better for my family.