Patience
First of all, I really just want to take a second to shout out to some of the wonderful people in my "hood. One of the most special young women that I've been blessed to know, Adah, has gone out of her way to ask people to pray for me. She must really have some pull around Vox and people have been coming out of the woodwork to say hello and to send prayers my way. Adah, I want to thank you, from the bottom of my heart. If you were here, I'd give you the biggest bear hug of your life! To everyone of you who have been giving your time to pray for me, OMG! Your prayers are working and I want to thank you all so much. SO... BIG virtual group hug to all of you. I wish there was something more I could do to express my thankfulness. I just hope you know that I really mean what I'm saying. Your prayers aren't falling on deaf ears and they're NOT going unappreciated by me! I love you guys. I really feel like the most blessed and lucky person in the world. I am certainly rich in the area of good friends:-)
Here's where we're at: I was released from the hospital on Easter day because they could find no more veins to give me the two units of blood that I needed at that time. They also needed to give me 3 consecutive units of iron because I was losing iron just as fast as they could put it in. There was nobody in the hospital to put in a central line or a pic line like I needed. I'd been asking for these more permanent lines since I was admitted but the nurses would not even ask the doctors because there was always a possibility that I would be released the next day. Several days later, I was still being tortured with these idiots blowing up every good vein that I had. I was finally told by a supervisor that I could yell and scream and threaten these bastards with the hospital administrator. This is what I'll do from now on. So, I got to go home because, either they discharged me or I was walking. I'm getting mean now. They let me go if I promissed to come back and get my blood the next day.
I came back on Monday. My mom took off work to bring me back to the hospital. I had to go to the "infusion center", where I was told that they couldn't even draw blood from me because my veins were so bad. They work with a lot of cancer patience and people who are notorious for not having veins, and they are generally AT LEAST able to draw blood. They couldn't on me so they tried to get me into the radiologist to do a pic line. Because I was ONLY bleeding to death and nothing more, they wouldn't consider it an emergency and I had to go home and come back on Tuesday, which is today. 8:30 is when they told me to go to admitting to get this party started. I showed up at admitting, Ben taking off work this time (because I'm too weak to drive), and they told me I was supposed to be here at 8:00. It wasn't the hospital's problem that Mom and I were told wrong. NOW I would have to be worked into their schedule and that meant that I might not be seen until 3:00 this afternoon. I was more than a little pissed. It takes more than the loss of blood to make me forget that I have a "temper". At this point, I don't really know what to do because if I show them that I'm as mad as I really am, they could treat me worse and make me wait longer. You just don't know how it will work out with these people. I kept most of my cool. I got my pic line within the hour. It could have been SO MUCH WORSE!!!!! Prayer answered.
It was explained to me that because blood takes 4 hours for each unit to process (that would be 8 hours for me), and iron takes 1 hour for 3 consecutive days, that I would be admitted so that they could moniter me and it would just be that much more simple. I'm packed to stay. Once I got down to the infusion center, they took my blood to see where I'm at today. I DON'T NEED BLOOD! My blood went up a whole point since Easter! Prayer answered again! I can just go home now and come back and get my iron for an hour every day. Not bad eh? God will only give us as much as we can take and I think he probably knew that I was getting redy to kill the nurses up on the "floors". My doctors are such good doctors now and I feel so blessed to have them but they only work out of this hospital. If it gets to the point where I'm feeling postal, I may have to switch doctors again just because I absolutely despise some of the floors they put me on in the hospital. This last stay made me feel like I was in the nursing home. One lesson I've learned is that if you ever have to go into the hospital for any reason, TRY to bring someone with you. I watched some of these people who didn't have family their to back them up not ever get waited on by some nurses. I wouldn't have gotten 1 single glass of water if it weren't for Ben or Amber or my mom. The lady next to me wouldn't have gotten 1 single glass of water. A volunteer changed my bed only 1 day. I changed my bed the rest of the days. The lady next to me laid in her own mess for about an hour before anyone would help her. When they did help, the nurse gave the patient all the stuff to clean herself. She was a 73 year old lady who was weak from loss of blood too. They would NOT help her. I called the nursing supervisor to complain for this lady. We were given semi better nurses after that.
Where I'm at with the doctors: I'm being told that because of almost 100% paralysis in my stomach, maybe the best way to permanently fix me is to completely remove my stomach. I know I've said this before so I'm sorry if I'm boring anybody:-) My ulcers are being caused from the food laying in my stomach, causing acid and eating holes. If I had no stomach, this wouldn't happen. They want to attatch my intestines to my esophagas. Very little of your digestion happens in your stomach (even for normal people) anyway. Your stomach just squishes up your food and technically, you can live without a stomach. The quality of life wouldn't be as good but mine isn't great anyway. I'm in the hospital every other week and my last major surgery that I wasn't supposed to live through just happened in August. They think this might just fix me as best as I can be fixed. The surgeon is going to a conference and will be presenting my case to other surgeons in order to get their input.
There is another option that I think I'm going to choose. They can make another tube (for a total of 2 tubes) coming off the other side of my stomach. They can cut away the damaged ulcerated tissure that won't heal with medication. There is a POSSIBILITY that this might work. They don't think so. This is the general consensus of all of the doctors combined. I think I'm going with this option because it leaves the possibility that I might be able to live a somewhat normal life. They can always take out more stomach if this doesn't work but if they take out everything now, I'll never know if this could have worked. To take out everything just seems so drastic. Besides I want to give this new nutrition stuff that is supposed to rebuild cells, a chance to work. Just maybe, with prayer, faith and a positive attitude it might work on me. I'll never know if I let them take everything out right now.
The other positive thing that happened yesterday was that I signed up for disability. There's almost no way that I won't get it (or so they say) with the amount of hospital records that they have on me. I'll be getting back pay to 2006! AND my kids will also get a little amount of money. Hey! Anything that we weren't expecting is better than nothing, right? I never wanted to file because I couldn't get it through my head that I was REALLY disabled. I think I'm accepting that, for at least a little while, I will be. The good news is that I don't always have to claim disability. I mean that if I ever feel good again, I can go back to work. I guess I thought that once disabled, always disabled. I just hate that label. I'm just too proud for my own good. So proud I'm actually stupid sometimes! lol I'll get my first check anywhere from June to August. Great, huh?
AND another thing is that I took Savannah to get her permit yesterday and she passed! She only missed one question. She has a photographic memory so I was pretty sure that she would. I also took her to open her first checking and savings account that she has control of. I set up overdraft fee protection that won't come out of MY account too! Yay me! I guess I just feel like I need to get things in order in case something really does happen to me. I know it's negative to actually think that way but to me, it's being realistic. Even if nothing happens to me, I don't really have too many good days where I'm out of the hospital for very long, so I need to get as much done as I can while I can do it.
So there it is peeps! Thank you all again and I love you all!!!!!!!!
Comments
Congrats on the blood!
I don't think I've ever complimented anyone on their blood-production before, come to think of it. I may never do it again. You should feel honored!
It sounds like a totally great day, once you got past the jackasses who told you you'd have to wait.
I think nurses and hospital people become accustomed to dealing with idiots, and when somebody fairly lucid and intelligent comes in, it's a shock to the system. Once they figure it out, they manage to take care of people. Some patients just lean on that nurse bell for every little thing, so the nurses get numbed to it.
I bet they'll never underestimate you (and Amber, etc) again, or they'll do so at their own peril. Great news--thanks for sharing.
((hugs))
Alliebx
You know I'm going to keep praying.
Thanks for the extensive update. I never knew what all you were dealing with. Even with all that was going on you had the time to take Savannah to get her permit. That is amazing. My prayers continue.
I read Adah's post, it was beautiful. You are certainly loved by a lot of people. But, who wouldn't love you, you are an amazing person.
I hate having to wait when I am there on the time given to me,whether or not someone made a mistake. You didn't have a long wait though, that was a good thing.
I truly think all the prayers are working great. I am so happy that your blood count went up on its own. Only you know what option will be best for you. That nutrition stuff made you feel better , didn't it ? I believe I would try this way first also.
I am so glad you decided to sign up for disability. I know you have been putting it off for awhile . It will help you out quite a bit. You want have to ask for money. lol
I am glad Savannah passed her test. Did yall check that car out for her? Well, tell her congrats.
Yehaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa.
<3 Lots of love, Daveb
((((((((((Shell)))))))))) Prayers for all you're going through.
And don't think of it as disability pay from the government. The money is supposed to keep your family (and YOU) from hurting for money while you're going through something that is necessary to keep you around!
"They can always take out more stomach if this doesn't work but if they take out everything now, I'll never know if this could have worked."
I have to agree with you... It makes sense to start small. If your body can handle it, that is.
"I know it's negative to actually think that way but to me, it's being realistic."
Who can blame you for trying to keep your household in check? Isn't that why people make wills and get life insurance?
Keep your spirits high... I'll be thinking of you!
Thanks for the blood production compliment! lol I never thought I'd be excited about something so simple, for real!
I had to share a room with someone (an older woman) who was like the way you described. She layed on the bell for everything. In her defense, she was used to the way that nurses USED to take care of people in the old days. She thought they'd at least bring water, and they did not. I did get a little tired of her calling them for everything. Me? I'm good just as long as my pain meds are consistent! lol
I personally am shocked that people like me! lol What Adah did was so wonderful, it made me cry. I really do think the prayers are what's working. My blood count has never gone up on it's own. Even if it goes down again, at least it was up today and today was good.
Disability.. You've GOT it. I won't have to beg like a little girl for a dollar from my husband! lol I'll have my own money and that's going to feel really good, Netta.
Savannah IS buying that car that Jerry and Dianna had. It's not pretty but it's almost paid for. She made another payment yesterday. She's doing ok with money, really. It felt good to get her stuff out of the way. I feel like I'm racing against the deadline sometimes.
I have always believed that when you are ill in hospital that you need a healthy person there with you to help. I can't believe the nightmare that you are living through. I think that you are amazing for holding it all together and still having spunk to fight those who are preapred to short change you. Go girl!
I have nomedical background, but I would also try the "lesser" treatment first - no stomach is rather radical!
It is good to hear an update, but - dang! - you've got a lot going on! I'm amazed at your spirit - God is good!
And good on you for taking disability - after all, you paid into the system and have a legit need now. That's what it's there for. (At least, I'm assuming you've paid in: in Canada, that's how it works. That's why I don't feel bad for taking my mat leave - partially paid leave for 50 weeks! :)
Great news all around. You just keep at those docs and nurses and make them behave. I so glad to hear that you are getting better and better. Give yourself a chance to heal, you would be surpirse at how good the human body is at healing itself. As my old vet used to say "all it takes is time and patience but most people don't have either."
You are on the right path now just stay the course. Hugs and healing light
(((((((Lost Dwarf)))))))
I'm trying to thing that it's not from the government. Besides, I wouldn't get anything at all if I hadn't paid all that money into it when I was working, right? It's just hard to finally think I'm here and I need it. The good thing is that I can go back to work if this all passes and I start feeling better. It's not a permanent thing. I mean you're not labeled disabled for the rest of your life.
Thank you! I still need the prayers.
You know, it IS a shame that I had to get mad because I'm generally so nice to the people taking care of me. It's gotten to where everyone is just lazy and they want to get paid for doing the bare minimal. It used to be that hospitals were there for patient care and they say they still are. It's the people working in the hospitals that aren't there for patient care.