My Journals – 3 (Lack of Trust)

Friday, September 12, 2008

            Tony took today off of work so that we could go to 2 of my doctors and get some disability papers signed.  We had to go down to Northside Pain Center, and out to Alpharetta, two different sides of the world it seemed like.  Anyway, we got what we need, but it took all day, so by the time we got home, I was exhausted and in pain.  Riding in the car kills my hips and legs.

                        Saturday, September 13, 2008

            Today was not so bad, not so much pain that I couldn’t handle it.  I was a little sad this morning because I cannot go to Meagan’s softball games yet.  It’s yucky outside and I am achy. 

My nurse came out today to change my vac because we were gone all day yesterday.  I hate it when they change it, because it hurts terribly while they are doing it, plus it hurts for hours after.  Sometimes, it even still hurts the next day.  I feel like I have a lighter held up to my back or someone is sticking a ton of needles in it.

            This afternoon, one of Michelle’s friends, Noelia and her husband Jimmy, came over. To bring dinner and a gift   Noelia prayed for me (she prays so well, I couldn’t believe it).  Noelia told me to wait to open the gift when I had about 30 minutes alone, and read the note she put in there before I opened the gift.  So, right after they left we had to go to get to Stephanie’s to watch the GA game.  So, I decided I would wait until we got back home to open the gift. 

            As I read Noelia’s 3 page letter, I was very touched, but I didn’t cry.  But, when I opened the box, I lost it….it was a personalized journal that says “Kim’s Treasures”.  It is black leather and it is beautiful.  The funny thing is, just the day before I was telling Michelle that I needed a new Journal.  God works in mysterious ways.

            By bed time, I was in a good amount of pain and was extremely tired.

                        Sunday, September 14, 2008

            Today was one of the worst days I have had in quite a while.  My wonderful, loving husband let me sleep until 11:30. He said he figured, if I am sleeping, I am healing.  I don’t get to rest too much during the week because of all the phone calls and people in and out all the time, so I guess I really needed to catch up.

            Although I feel rested, my body hurts terribly.  I have been pacing the floors constantly today.  My hips and legs are killing me.  My wound vac started acting up again and ended up having a leak in it.  The nurse had to once again come out to change it.  It hurts so bad when they do that.  This is the 2^nd day in a row they have had to change it.  I can’t take anymore.

                        Monday, September 15, 2008

            Unbelievable!!!!   Today was another horrible day!  The nurse had to once again come out and change my wound vac.  I don’t know what was wrong with it, but it has not been sucking like  it should.  I had a slight temperature today, which I haven’t had in several weeks.  Also, when the nurse changed the bottom wound, it was tender.  It hasn’t hurt at all in a couple of weeks.  I hope to God I am not getting another infection.  I will be devastated. 

            It has been a very long weekend, and I am so extremely tired and in so much pain.  I don’t feel very well and I have a doctor’s appt. tomorrow, so I have to get back in the car.  Oh, God please help me get through all of this.

                        Tuesday, September 16, 2008

            I woke up this morning at 8:36 a.m., Nikki gets on the bus at 8:07.  I didn’t hear my alarm go off again, so the kids let me sleep in.  Meagan is really becoming such a great young lady.  She got them both up, dressed, fed, and lunches made.  She got Nikki on the bus on time, and was going to leave me asleep and go to school on her own also.  I cannot believe Nikki left here without saying goodbye to me, but Meagan said that they agreed to let me sleep.  They really are great kids!  I am so very blessed, although it makes me feel sad and guilty!

            I was very emotional, in pain and extremely tired all day long today.  Claire came and took me to Dr. Lawrence today.  The doctor told me that I cannot go back on my RA meds. until December or January, and when I do she will switch me from Humira to Rituxan.  She said my RA has progressed from Moderate to Severe Advanced RA.  This Med. Is stronger and is given twice a year via 4 hours IV fusion at the hospital.  She also said that the exposed nerve I have in my back is 10 times as painful as having shingles.  I have never had shingles, but have heard it is very painful.

                        Wednesday, September 17, 2008

            Today was a pretty good day overall.  Dad took me to my Infectious Disease doctor today to have my wounds looked at.  He took the pic line out of my arm and gave me oral antibiotics that I have to take 4 times per day until my wounds are totally healed over.  He said that the fever and the pain in my bottom the other day very well could have been some Staph, but that the antibiotics will take care of it.  He said that unless I developed a fever over 100.5 or a nurse tells me that my wounds look infected, I am done with him.

            This evening my old boss, Missy G., and her other half, Mike James came over to visit.  They brought rice crispy treats for the girls and a card with a $100. Kroger Gift Card in it for Tony and I.  I am so overwhelmed by some the things these people are doing to help us out.  I just hope that one day, I will be able to help some of them.  I honestly do not know what we would do if we didn’t have people feeding us right now.  Money is so tight that there is no way we could pay the bills if we had to go to the grocery store.  I do not even know what we are going to do for Christmas if my disability doesn’t kick in before then.

                        Friday, September 19, 2008

            Today when the nurse came out, she brought another nurse with her.  The extra nurse is actually a wound nurse, the head nurse.  They found what they call an under mining in my bottom wound.  That means that there is a pool up under the skin that fluid has been sitting in, that all the other nurses did not see.  If the original incision of the wound would have closed up without them finding this, it could have gotten re-infected with Staph, and they would have had to cut me open again and start all over.  I am so angry!  I am so thankful that they found this in time.  That explains why my bottom wound has been hurting a little more than it had been.

                        Saturday, September 20, 2008

            Today was Nikki’s B-Day.  Tony and I took her to breakfast this morning.  I was going to home and take a nap before we took her shopping, but Mom called around 11:30 and said that they were ready to go.  I had just laid down, I didn’t get to take a nap at all.  Nikki wanted to go shopping instead of having a party, and had to go to the mall of all places.  I wasn’t thrilled about it, because I knew I would be tired and in pain, but I sucked it up and went.  The only bad thing about it was that I had to be pushed around in a wheel chair all day.  There was no way I could have done all the walking.  I hated the fact that my Mom, with knee problems and my Sister, with her own back problems had to be the ones to push me around.  They said it was o.k., but I felt horrible, embarrassed and angry that I cannot do things on my own.  

            We got home from shopping around 4:00 p.m. and had to be back at Stephanie’s house at 6:00 p.m. to have dinner and watch the Georgia game.  I didn’t have time to nap in between then either.  I was in pain and pretty worn out, so our friend Lisa brought me home around 10 pm.  The game was not over, so Tony and the girls stayed and didn’t get home until midnight.

                        Monday, September 22, 2008

            I had to go back to the Rheumatologist today to have her fill out paper work for the disability attorney.  While I was there, I asked her “since she couldn’t put me back on my RA meds. until Jan., and then they start fusion surgeries in Feb., what were we going to do?”  That is a long time without my meds., because I am already stiff, swollen and having a hard time walking.  She said there is no way we could wait that long, because if we did, I wouldn’t be able to walk at all.  She is suppose to be calling my Infectious Disease doctor and discussing what I can and cannot have.  My disease is advancing quickly and this whole thing about not being able to take the meds. is really scaring me.

                        Friday, September 26, 2008

            I woke up this morning in a lot of pain.  I was very stiff and my hands were killing me.  While fixing lunches for the girls this morning I dropped just about everything I put my hands on.  I even dropped a whole gallon of milk in the floor.  Thank God it didn’t bust open. 

            Every joint in my body hurts.  My hands and feet are swollen and I am stiff.  Every time I get up from sitting for longer than 15 or 20 minutes, I am so stiff, it takes a minute just to be able to walk without limping. Most days, I am o.k. emotionally about all of this, and I laugh a lot, but today SUCKS!!!  I am in pain and angry all over again.  God, please be with me today and guide me through this horrible time in my life.  In Jesus Name.  Amen.