Crazy Week

At the start of this week I had planned on reaching out to my blog readers and asking for your prayers. The power of prayer is an amazing thing and my faith is what keeps me going. I wanted to ask that you each take a minute or two and say a prayer for me and my family. During the last nine years of Mike's illness, I have never before been so overwhelmed: physically, emotionally or financially. I did not feel things could get worse and I was looki0ng for your help. It doesn't matter what religion you are, who you pray to or what you believe, I just needed to know that strong and powerful prayers were going out for me. As this week comes to an end, you will find out just how much I need them now.

On Tuesday, right after dinner, a pain, the likes of which I have NEVER experienced before, started in my back. I thought it was gas, so I took Tums. My brother was upstairs resting (he's had his own health issues) and Brandon was with me in the living room, but I had to leave to get Courtney from work (She commutes from Fordham in the Bronx out to Garden City 4x a week for her job at The Disney Store). Driving to get her was a complete blur - the pain was unbearable. I didn't know whether to cry or throw up. When I got to the mall I got out of the car and started pacing (which must have looked suspicious to Security), but I just couldn't sit for another minute. I was going to explain to Courtney that I couldn't wait with her at the train station, that I had to drop her off and run, but with one look at me she said, "mom I'm taking you to the hospital". Two things entered my mind, 1) what about Mike? The ER can take hours and if I'm stuck there for the night, who will prepare his food and meds in the am?; and 2) I have no Insurance. Yes, for the first time in my life, I have no health insurance. I was going to wait it out, but both Courtney and Brandon were convinced that I has appendicitis and was concerned it would rupture. The look on their faces made me cry even more. With all they had been through with Mike, to see their stronghold collapsing in front of them, crying out in pain, they were petrified. I went to the hospital for them. The two hours in the waiting room was the longest ever - I was pale, rocking back and forth and running into the bahroom to throw up. I wasn't saying a word and I felt bad for Courtney each time I went into the bathroom. I could see the look of relief on her face each time I came out - I could read her mind, "what will I do if she takes too long? Did something happen? What would I do?" I wished I could ease her mind, but at the time I couldn't even think straight. 2 1/2 hours later after a CT Scan and some of the worst pain I have EVER felt, it was confirmed that I had a kidney stone. I have a very high tolerance of pain - in fact I had Branfdon COMPLETELY natural, no drugs at all, but this pain was so bad, the morphine they gave me, only took the edge off.

We left the hospital at 1:30 in the morning. Courtney missed her one class on Wednesday. Brandon left school early. Brandon did an AMAZING job getting Mike into bed with my brother and I couldn't have been more thankful or proud of each of them. They really stepped up to the plate when I needed them the most.

On Wednesday the pain was still with me and I tried to figure out how I would know if it passed. I spent the next 2 days drinking 2-3 QUARTS of water and FINALLY last night I believe it passed. Then about 3 hours later the pain started again, and it felt like something else had passed. So far, no more pain. Of course, Mother Nature and/or God has a sense of humor because on Thursday I got my period. Seriously????

THANKFULLY Mike remained status quo throughout, I guess God thought, "enough is enough". Now that my pain is gone, I am left to worry about how I will be paying for the ER visit. The hospital gave me paperwork to fill out for "Charity Care", which I will no doubt send out when I get back to work.

Courtney and I still don't have health insurance and it weighs on my mind every minute. As I said, I have never not had insurance, my whole life. Social Security feels that I make too much money for coverage under Family Health Plus - and they actually sent me paperwork saying I can get coverage if I pay the $3,300/month premium. That would be added to the $1,200/month I'm supposed to pay for Mike's aide (which I haven't done in months). I wait every day for a call from the Agency telling me they have to pull Mike's aide because on non-payment. There's not much I can do because I just don't have the money.

And this is where I get frustrated and angry. I've worked since I was 16 and paid into social security. Now that I need assistance, hopefully only temporarily - I do not qualify for it.......Yet, there are other people out there that JUST came into the country and they qualify for everything. I hate feeling this way, but our government gives me no choice. I need their help, but they don't care.

THAT is why I asked for your prayers. Ironically, I planned my request even before my visit to the ER. The visit only made my request more urgent.

Please, if you read this blog, take a moment and say a quick prayer for me and my family. Pray for our strength and guidance as we travel this difficult road. The power of prayer is amazing!

Thank you and God Bless

Pictures - As Promised

Courtney and Brandon driving the ATV's at the event out in Quogue where Courtney was presented with a check for books for school.

Courtney, Brandon and I at this year's Memory Walk where "henley's heroes' raised $3,800.00.

Courtney, Brandon and I along with Denise and her husband Tom who ran the ATV event . They are good friends of one of my dear friends and during the summer they hold monthly events to give back to different people. They blessed us with a check for Courtney's books.

A picture of Courtney at Fordham University...her dream come true.

Poor Mikey

For the past week or so, we have been dealing with a pressure sore on Mike's right thigh. We were very vigilant as soon as we saw it, and at one point it got worse, before it got better. Of course, while trying to keep him off his right side, we had to rely more on his left side and back. It was only a matter of time before either one of those areas broke down. It is his back. He developed a sore at the very bottom of his back and we have aggressively started to "attack" it. It's a more difficult area simply by it's location, as it is prone to infection just from being soiled throughout the day. We are doing our best and pray our efforts are successful.
In the mean time, it appears that Mike developed the infection on his toe again, most likely the same infection that took us a good 6 months to completely get rid of the last time. The left big toe is red, swollen and open. The podiatrist will be coming by tomorrow to check it out and hopefully prescribe the same antibiotic ointment and possible antibiotic he took last time. Whenever an antibiotic is thrown into the picture I have to carefully weigh the pros and cons. Most antibiotics are very strong and hard on the system, so if Mike can become uncomfortable from stomach irritation or diarrhea, then it may not be worth administering it. I don't want a possible infection to spread - but if he can dehydrate by treating it, then what do I do?
We had a busy weekend. Courtney came home as usual, to work, but I barely saw her. On Saturday morning we met with the head of the Long Island Chapter of the Alzheimer's Association. She would very much like to start a "support group" of sorts for the children of people with Young Onset Alzheimer's and she asked Courtney and Brandon to be co-facilitators. (Brandon was supposed to go to this meeting also, but he had to put in service hours for the National Honor Society by helping out at his High School's Open House). Courtney is a bit concerned that teenagers won't want to attend, so we'll have to see where that goes. After we left that meeting we did our Taregt shopping and then Courtney went to work (Brandon came home then went to his friend's house). On Sunday my brother treated us all to breakfast, which was a treat for me since I didn't have to make our usual Sunday breakfast. Afterwards I went food shopping, while Courtney went to work. I came home and took advantage of the windy day and did Mike's and my sheets. There's nothing better than getting into bed at night with sheets fresh from the clothesline!! Courtney came home from work and I drove her back to school. I got in at 8, got Mike into bed and then finally......relaxed. Oh, I almost forgot, Brandon injured his arm and cannot straighten it. It seems like a pulled muscle, but we all know what great patients men make :)!

Pictures

I know I said I would have pictures up and I haven't forgotten, but I just haven't been able to do it. It's been a little over a year without a home computer, so the only way I can download and post pix is when Courtney comes home from school. This is on the weekends (when she works)and I'm normally running around crazy, so it never seems to get done. I want to share these pictures with you and I promise I will as soon as I can.
Mike is "status quo". It's one day at a time....some better than others.

Fever - No Fever

Last Saturday as I was getting Mike into bed and he felt a "little" warm, but nothing to be crazed about. Much to my surprise, he had a 103.3 fever. I also noticed that he had a pressure sore on his thigh, which was open a little - I did not like the way it looked. The hospice social worker came on Monday and my mom mentioned what happened on Saturday. She in turn called Mike's nurse and so she came Monday instead of Tuesday. When I questioned why he keeps getting these fevers, she just said, "sometimes it's just a part of the process and is not caused by an infection". WOW I wasn't expecting to hear that, but at the same time, reality kicked in. I've been logging Mike's bouts with fever and at first he would get them maybe once every few months, then it was once a month, now it seems like once a week.
Last night, he developed a fever again - 103.5. I had to give him two rounds of Tylenol before the fever broke and he got comfortable. The only difference between last night and Saturday was that last night, he appeared to have some chest congestion. He coughed up some "glop" and he fell back to sleep. Today he woke up with some "gurgle", he didn't have a fever and he was able to cough up some stuff. I just called home and his aide said he seems to be doing OK.
One day at a time.....

Little Kids, Little Problems...

...big kids, big problems. I've heard this phrase many times over the years, but never have I understood it more than I do now.

I guess it's not so much "problems", as it is dilemmas and hurdles. Courtney got into the school she has always wanted to go to, and while she is enjoying the classes and the challenges they bring, she's having a difficult time connecting with anyone. She has a few forces working against her: she's a transfer student and lives off campus, she's not at school 4 days a week (she commutes home to her job) and the biggest of all - she doesn't drink or go out partying. Understandably, college kids test their new found freedoms, and usually go wild. Courtney is not that type and she can't understand how most kids stay out all night and sleep in all day, sometimes cutting classes. While she didn't seem surprised at this situation at Hofstra, where anyone is admitted, she didn't expect the same from the more difficult Fordham. It's not for the lack of trying either, because she has already joined numerous clubs. What better way to meet people who are interested in the same things as you than by joining film and communication clubs. Despite all her efforts, she's finding that she's definitely the odd man out.

This is also the time of year I will begin looking at colleges with Brandon. The realization that he will not be home next September is beginning to sink in. Courtney tells me constantly that if Brandon goes away to school, she will commute because she knows I cannot get Mike into bed on my own. I tell her that it's not an option, but she refuses to listen. I don't say anything anymore, because who knows what tomorrow will bring, let alone next year. I have taken a few days off to take Brandon to visit some schools he's interested in: Seton Hall, Rutgers and Stonybrook. He likes Syracuse, but that's too far for me to go, so we did the virtual tour. He may also check out Scranton. All this needs to be done ASAP, since his college apps. are due into his college advisor by mid-October.

Courtney has been driving for 2 years and Brandon has finished his driving classes and can take his road test any day now. I can't begin to list all the times it would have saved me SO MUCH had we had another car. Over the summer there were so many times Courtney could have done things for me while I was working. She also got a job, is GREAT, but I had to run her back and forth. Now Brandon is looking for a job and he will need to get around. If we could somehow afford a car, then there's the insurance and gas. Kids have survived without cars for time and again, now mine will have to survive the same.

Where does time go? I remember being up with them at night when they were teething, now I find myself waiting up for them to get home. Little kids, little problems..... Life's little dilemmas...dealing with them by myself, sad of what Mike has missed.

TODAY IS WORLD ALZHEIMER'S DAY. LET'S NOT FORGET THOSE WHO CAN'T REMEMBER.

Feeling Down

I hope to have some pictures up this weekend from the Memory Walk and the kids ATV excursion. I haven't been feeling well lately, both physically and mentally. Too much is hitting at once, and again, I am in the overwhelmed stage. Each and every time I hit a valley like this, it takes every bit of strength I have to fight my way out. I am blessed that Mike has been in a "holding pattern" and that the kids are doing better. They each had sinus infections, which I think I may have - or it could be my allergies - I'm not sure. Just feel like s*&t. I honestly don't know how much one person can handle. I have never said "it can't get worse" because I know very well that things definitely can. Every morning I wake up and pray that the day will be better and bring some GOOD news. I'm still holding onto Courtney/Fordham to help me get through this - it's been the one good thing that's happened in a while. I will NEVER GIVE UP and will continue to HOPE.