Monday, December 22, 2008

An Early Christmas Present

Over 26 years, I have been married to the best husband any man could be. He has been taking such good care of me since (and before, but in a different way) this illness began. Without his love and patience, I might not even make it out the bed until late in the evening each day.

As I've mentioned before, he helps me to sit up, places the icepack on my back and brings me a cup of macchiato in the morning. He knows that the icepack (with meds of course) is my lifeline and without it, I can't even begin to move myself out of bed. He shows me so much love by making sure I'm able to function each day, before he leaves for work. I know, and appreciate, how hard this is when you're trying to focus on getting ready, and making it to work on time. His love shows in all the adjustments, rearranging, etc., he does around the house to make sure I can get around with the wheelchair. For instance, as soon as we moved, he built sort of a deck like ramp so I could get to the car. With steps leading to the drive, it just wasn't a simple type of ramp.

I don't get around much with all the pain and what not, but he makes sure I'm able to get out of the house at least once a week. I have visual high hopes of getting out and about, but my body doesn't seem to let me do all that I want. Mickey says he knows when I'm having a really hard time if I turn down going to stores like "Walmart". I love to just browse around, pick up little odd and ends, and shop for snacks. I don't make it there as much as I'd like to, or even close to it.

Well, Saturday we (me, Mickey, Keonna - daughter, and Tanira - granddaughter) went to pick up a puppy for me. I already knew we couldn't afford a full bred "Yorkie" so we got a "Chorkie". A yorkie and chiwauwau mix. I wanted a boy puppy but they were all black and looked more like a chiwauwau. So, I ended up with an adorable girl puppy who is just the tiniest thing and she was the only pup out the batch that looked like a yorkie. For now, she has a black and brown coat but eventually she'll be a steel cobalt-blue color. She's so precious and playful. Thankfully, she won't grow over five pounds, at least we hope not because that's my weight restriction.

Mickey really didn't want to ever get a puppy so I really appreciate him changing his mind for me. She had an accident yesterday and he said it's alright, she has to learn. I love him so much for always being there for me, in all the ways that really count. We have plenty of ups and downs, just like any other couple but over time they don't seem to be a really big deal.

We say what we feel, one or the other might get upset for a short spell or a couple days, but overall we know we love each other and it will be alright. He even seems to manage (and I don't know how) my deep depression periods. Thank GOD they usually don't last longer than a week and lately they've only lasted as much as a day.

Since Pinky's first accident, she's gone to her spot the rest of the day and night, and again so far today. I make sure to give her a snack afterward, while clapping. I'm so thankful to always be reminded that I have the gift of love and caring from Mickey. He's adjusting to having Pinky around and that's terrific.

I hope everyone is having a glorious day!! Please continue to keep everyone at ASAP in your thoughts and prayers. Remember, guests are welcome.

Friday, December 19, 2008

A Small Christmas Get Together

On Wednesday, before my doctors appointment, I had several friends over to the house. They bought lunch, gifts, and more important, memories, conversation and many laughs. It seemed more like a Christmas party than just a lunch.

We had so much fun talking about old times at work, times spent with grandmothers when we were children, and just about anything and everything. I hadn't laughed so much and enjoyed such a good time with a small group of friends in a very long time. Actually, the rain was so bad outside with flooding everywhere, I thought they might have to cancel. My dear friend Jacque said no way, they were going to pick up lunch and be on the way around noon, so I wished them a safe trip.

There were four (I expected three, I had gifts for three) friends that showed up. After an hour, or so, three had to return to work. We took time for photos and then they left. NoraLee remained behind, bless her heart, she cleared everything away. I got an icepack out of the freezer, then she helped me go through the two baskets of goodies. We had so much fun going through everything, it was like Christmas. One of the baskets had a few decorations in it and NoraLee placed them, in a decorative fashion, on the mantle. We chit chatted for a while, then NoraLee saw me to bed and let herself out.

This was a time I will always cherish. Please keep everyone at ASAP in prayer. Thank you.

I hope everyone is having a glorious time, preparing for the holidays, or just living life!

Thursday, December 18, 2008

Appointment w/Dr. X

I had an appointment w/Dr. X. yesterday. He said the pain in my thighs are nerve related and told me to speak w/my pain management (PM) doctor about prescribing Baclofen. We'll see how that goes. I let him know that the PM doctor was trying to get my pain under control right now and doesn't want to add too much at one time. This way, we know what's working and what's not. Since it was recommended by the main doctor following my case, I'm sure he'll add it.

Dr. X. seems to think that I haven't accepted that this is a permanent condition. I believe I have. I think he said this because I asked if a CT scan will show more than an MRI. I told him that something has occurred in the last few months in order for my pain to spike up so bad, and for so long. He said if the Baclofen, and others medications the PM doctor adds, doesn't work he'll order the MRI. I let him know that I'm currently due to have one in February anyway, according to my Neurologist.

We discussed the spinal cord injury program at Sharp hospital again and I let him know that my insurance company (none of them) won't authorize it because it's considered non-medically necessary. He wants to do a peer-to-peer review but we'll wait until January because Mickey's company is switching from BCBS, back to Cigna then. Three switches in one year, crazy!! Hopefully once he does the peer review, Cigna will cover the program. The program is designed to train patients the proper use of a wheelchair and hand control driving. I need the latter training class. Not that I'll be able to afford the installation and modifications to my vehicle but at least the training portion will be out of the way. Mickey wants me to call Sharp and see how much the program costs, out of pocket. I'll get to that, I have a few weeks to get it done.

Basically, we continue to monitor my situation and make sure I'm comfortable. Dr. X. feels that if I'm able to drive, I will not have as much pain because I'll be able to get up and go whenever I want. He says that being stuck at home isn't good and can have a negative mental impact. Basically, not being able to drive, contributes to depression and pain levels. If I'm able to get the independence of driving back, I might begin to feel better. I don't think so. I'm a passenger in the car and riding contributes to an increase in pain. When we're in the car for longer than 30 minutes, I'm crying from the pain. I carry on because I feel that if I have to be in pain, I may as well be headed to some place fun.

Please continue to pray for all the members, and caregivers, of the ASAP support group. All are welcome to visit:

I hope everyone has a pleasant day!!

Sunday, December 14, 2008

Pain Management Visit - December 9th

I've been having such a hard time managing my pain level over the last three or four months. During that time, I was switched from a pain management doctor to a physical medicine and rehabilitation doctor. My pain management doctor made the switch.

My first visit with the new PM doc, in November, was more of a consultation. This last visit he increased the extended release medication and added an immediate release medication. I began taking them the same day of my visit. So far, I haven't noticed too much of a change and I'm still having to use the icepack more than once each day. Prior to the last three or four months, I would only need the icepack first thing in the morning. My husband would sit me on the pillows and add the icepack. I would leave it on for an hour before attempting to transfer into my wheelchair.

Lately, I've been using the ice packs anywhere from two to four times a day. I've also been sleeping a lot more because when I'm sleeping, I'm not crying from excruciating pain. I'm hoping and praying that this increase does something soon. Overall, between the pain, the progression of other symptoms, and the constant muscle spasms in my thighs, I'm not doing too well health wise but I do still keep a smile on my face most of the time. The deterioration the doctors have spoken of, over the last two years, has become much more obvious to me.

Please continue to keep everyone in the ASAP support group in your thoughts and prayers. We also need to remember to give thanks and prayer to all the caregivers.

I hope everyone has had a wonderful weekend!

Tuesday, December 2, 2008


I hope everyone had a lovely, memorable Thanksgiving. I was able to enjoy a wonderfully glorious Thanksgiving with my family. My brother surprised me with a visit from Chicago, I was excited beyond belief.

I haven't been doing so well lately so I haven't been keeping up on my blogging. This is the worse time I've had since February when I experienced a significant progression. I haven't required nursing care this time but it's still very debilitating and overwhelming. In time, I'm learning to adjust to the changes, and new symptoms, but it's been extremely difficult to say the least.

I'm thankful that depression has not reared it's ugly head this time around. When I cry, it's completely due to the excruciating pain I've been struggling with.

I hope everyone has a great day! Please keep everyone at ASAP in prayer. Each of them is battling a similar evil every day. Special prayers for Angie and Kira, as they are both awaiting decision on surgery. Thank you all.