If Anyone Has Read My Blogs And Can Help

I have written about most of my health issues on here, my family, our financial struggles and my everyday life. We have some expenses that we can not afford, we do not have enough credit to take out any loans and we don’t make enough to pay them back.

My husband makes about $30000 a year. For a family of six  it is not much at all. We were barely living paycheck to paycheck before I got sick.

I am waiting for Disability to kick in to help with where we are struggling but so far they need to keep hearing back from all of the new doctors that I go and see to add to my case.

Now we have let so many of our bills go. We are behind on everything except rent because we really can’t lose our home.

I can’t afford school pictures, or any extras for anything. My girls got into girl scouts with a grant to pay for it. I can’t afford to put them into any sports or anything.

We are okay without extras. We are happy to just have our roof over our heads and food to eat.

But there are things that we need that we just flat-out can not afford.

I really need some extra money to get to better doctors that are a little over two hours away. The gas to get there costs, then we have the room for my family to stay in because I don’t have childcare and I can not drive myself, also food out there for the kids because my husband and myself would probably just go without. The whole time that I would have to stay there my husband would have to take off from work and that would be us missing out of half of the months income.

It sucks that I have to ask for help but I feel like I wont be looked down on here.

Anything would help.

 

https://www.gofundme.com/waiting-4sswaiting-4ssi-family-of-6with-sick-mom

 

 

Life Is Too Short To Live In The Past

There is not enough time to let the little things get to me anymore, to waste time fighting with people, or for drama.

Everything that has happened is all done and over with and I just want all of my family and friends back.

I forgive those who have wronged me, who have let me down and who just haven’t been there.

I apologize to everyone whom I have wronged in my life. It is time to just start new.

I am ready to just have all of my family back.

Life is just too short to hold on to the past.

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.

To Clean Or Not To Clean

This morning I wake up to all of my children eating breakfast, my husband getting ready for work and my house is actually quite.

I get up and take my meds, get dressed, help my oldest calculate her breakfast carbs and insulin, get my boys dressed, kiss my husband good-bye for work and finally sit down.

My kids want to cuddle and it is Saturday so its catch up on the house day. We cuddled for a while and watched some cartoons.

I get up and get the kitchen tidied up and start the living room. I need to detail everything because that is what we do on Saturdays. Anyone with kids has one of these days where they disinfect and dust the house. Maybe mop or catch up on laundry and some other little tasks.

My brother came over and brought lunch. I love him so much, he is an amazing brother and uncle. I am happy to have him in my life.

We ate pizza and bread sticks and watched some more cartoons with the kids. Everyone was just so happy, I did not want to push the kids to help out while their uncle was over.

My brother left for work and I’ve finished the living room and am starting my diningroom. I took a detour at the computer and started typing.

I think that I can save some of the detail work for tomorrow and enjoy the rainy day cuddles with the kiddos.

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.

The Poor Moms Birthday Plan, The kids Deserve More Than This

 

I forgot about how much Birthday parties cost. We are planning to have a birthday party in our yard for our girls. My girls are turning 6 and 7 on November 1st and October 28th.

At school everyone invites their whole class to their birthdays and it’s just a general unspoken rule. My girls get invited to so many birthday parties. They do have smaller classes, 16 kids in one class and 20 in the other. Well we invited all of the kids from both of the girls classes.

Then we start adding up family members. We have a GIANT family. I have 11 siblings (full, step and half). My cousins want to attend and to bring their children. We seriously have like 30 to 50 family members coming to this party, if not more.

We are having their party outside so everyone has breathing room. Our home is just not large enough. However we do have a very large yard.

We have a playground that we got for free from Craigslist and fixed it up. Someone is wanting to get rid of a trampoline as well and that would be a nice addition to our empty yard (if they respond to me). We will have out soccer nets and a volley ball net set out, a homemade photo booth under our playground, a hand-made been bag toss, some face painting, and a collapsible playpen that we are paying $6 for online that may or may not work set out for the smaller toddlers and babies. We are borrowing tables and chairs from everyone.

Every activity is so far free, I have put all of my energy into trying to crunch plan and do as much free hand-made things as possible. Which is hard when your hands don’t work well and your always in pain or tired. But I will keep pushing through this because my girls deserve it.

I realized that we can’t afford presents.

My Girls are so great, polite, kind, and they are always doing the right thing. They are both doing AMAZING in school so far this year. our oldest is doing amazing with her diabetes stuff, our second is doing so well with her transition from being home to being in school. I am so proud to have them as my daughters.

THEY DESERVE THE WORLD!!!

I am trying to find a way to get them presents this year but I can’t find any “extra” money this year. We can not let our bills go any longer because if we do then we will be without our vehicle, power or water.

I really want to get them some new size 1 snow boots that are the right size, socks, underwear, and size 8 jeans (they are both the same size)

They would be happy with some stylish boots and pants.

They are so understanding about our financial situation that they do not ask for anything because they know it all costs money and we just don’t have it.

I will attach our gofundme to this post as well.

I hate asking for help. I do not want anybody to feel like they have to help. Just if someone is in a strong financial position and actually can and wants to it would help us out drastically.

https://www.gofundme.com/waiting-4sswaiting-4ssi-family-of-6with-sick-mom

 

What Blogging Has Done For My Stress Levels

I started blogging just four days ago on October 6th 2016.

I started to help people who may be in my shoes or that may have a friend or loved one in a similar situation.

Blogging has turned out to be a huge stress reliever. I have noticed that in the last four days I have not been as stressed over my health as I have been leading up until then.

I have met so many new friends online, I really do read each and every comment and try to get back to everyone. I really appreciate the advise that I have been given and the help that I have received. I feel like I belong somewhere now, aside from in my house taking care of my family.

The sense of belonging does wonders for the soul. I feel just overall relieved of most of my stress.

I might feel this way because all of this is new, or maybe I feel this way because I now have more people to talk to.

I feel like this feeling is coming from the combination of having people to talk to, belonging somewhere and also putting my feelings and experiences out there.

I can’t and talk to many family members about my daily struggles, they don’t listen and honestly it seems like I bother them every time that I share that I have some new health issue.

Here I can post my life, I type my experiences and immediately my stress levels lower.

I LOVE this site. The people are AMAZING, I have the freedom to put how I feel out there and it feels great.

Thank you everyone for being here following my journey.