It's Been A REALLY Long Time!!!!!

Gosh, I didn't realize I haven't posted all year long. I guess I've been sleeping my life away these past few months. My pain has begun to increase back to 7-9 again so my pain management doctor was working on trying to bring it back down to 5-7, or better.

It's been a struggle but it seems we're finally getting somewhere, even if it's only because I sleep for several hours after taking each dose of medications. While I'm sleeping, I'm not feeling the pain. It seems like it's a terrible situation but really, it's not. I can remember not being able to sleep because of the pain, so at least I'm able to sleep now.

I can't remember if I mentioned it or not, but my pain management doctor wanted to spend more time on surgeries and less time on patients who only came in for check-up and narcotic scripts. I was switched to another doctor who's a physical medicine and rehab doctor. He started a more aggressive approach for treating the pain, than the PM doctor did. We have more work to do because, although I'm sleeping through the pain, when I'm awake it's still very high.

Mickey's employer changed medical insurance carriers again (due to the buy-out) so when we went to get the prescriptions filled in January there was approximately $140 increase. It made me sick to my stomach to worry about being able to purchase them each month. Lyrica and Oxycontin are the highest, with both being close to $100 each. Thankfully, I had extra Lyrica from when we were trying to work out the correct dosage, that helped keep the cost down for February. Now we'll have to work out March and the doctor said he probably has enough samples to fill a script. I sure hope he does.

I'm trying Skelaxin also. I didn't like the way it made me swell each morning, but it did help with the back and leg spasms. Due to the extreme swelling in my hands and feet, I'll ask if there's something else he could recommend. I couldn't even close my hands and there was one finger on my right hand that would pop before it opened. At least the Skelaxin was provided in samples and I didn't have to pay for it.

My new puppy "Pinky" is wonderful. She's a little cutie pie. We're working on her aggressive behavior but when she's not being aggressive, she's the most loving puppy there is. By aggressive, I mean she nips, barks, growls and bites at me and others. She even tries to push people out of her way with her head. She doesn't like to be left behind, if I leave the bedroom she makes sure she's right behind me. If I leave the bed to go to the restroom, she wants to go. She use to try to type for me but I've gotten her use to laying in her bed when I'm on the computer. Then, no matter what she's doing, she doesn't like to be too far away from me. Mostly, she's right under foot. I didn't think I'd be this happy with having a puppy but I guess I surprised myself. Aside from the aggressive behavior (mostly when she's sleepy, like a little baby fighting sleep), I'm very pleased with her.

Since I've been spending so much time sleeping, there's not much more to add. I'm hoping my body is still just trying to adjust to the addition of the immediate release Oxycodone and the increase in extended release Oxycontin. I really miss visiting ASAP several times a day. It really throws my entire day off track.

I hope everyone is having a pleasant day/weekend! Please continue to keep everyone at ASAP in your thoughts and prayers.

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. www.asap.org/forum

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!

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: www.asap.org/forum.

I hope everyone has a pleasant day!!

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!

Update

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.

New Doctor

My current pain management doctor is also a surgeon. He had gotten so overwhelmed in his practice and working every weekend that he decided to refer all his prescription only patients (this is where I fall in) to other doctors in the area. He chose doctors who specialize in physical medicine and rehabilitation. He now has more time to dedicate to surgical patients without working on the weekend. He told me if I ever have a problem with getting my prescriptions, don't hesitate to give him a call and he'll write my scripts out for me.

So, I saw the new pm doc Wednesday. It was an interesting visit, to say the least. His computer system malfunctioned right in time for my visit. He had all my previous medical records in his computer. He apologized continuously because this was the first time his computer malfunctioned and he does all his work from the computer. Basically, Mickey and I gave him an overview of what I've been going through over the last few years.

I then told him my condition prior to seeing Dr. V. At that time, I couldn't sit or lay down because I'd be in such extreme pain I'd classified it as closer to 15 on the pain scale. The pain scale goes from 1 to 10, with 10 being the highest level. I could only prop up against about five pillows trying not to move.

I explained that prior to the last three months, or so, my pain level was ranging from 5 to 7 throughout the day, sometimes spiking up to an 8. I explained that this was manageable for me. I was able to function. However, the last three months, or so, my pain level has been ranging from 7 to 9 and I'm having a really hard time functioning. I'm sleeping most of the day, and night, trying to keep from dealing with the pain.

I almost forgot to inform him that I've been experiencing a new type of pain in my thigh muscles. I've always had tightness in them, since this whole situation began. Now, I'm experiencing this pain that's so strong it causes me to yell out. It happens whenever I put pressure on my toes. For instance, I'm sitting in the wheelchair and get to the edge to pick something up, OUCH!!!!!!! My goodness this pain is intense and sharp. He nodded as though he knew what he could do to help me with this but didn't do anything yet. He promised that he'd be more organized for my next visit and we would begin to see what can be changed, or adjusted, to help decrease the pain.

I told him that my goal of being in pain management is to have my pain level back at a manageable level. If he could get it lower than that, I'd be forever grateful, but I'd be really happy just be able to function again, with a high (yes) but manageable pain level. I told him it's terrible to say that you're use to high level pain now. It shouldn't be this way. I explained that Dr. V and I were working on bringing the pain back down but so far, the 10mg/day increase in Oxycontin literally does nothing.

At the end of the appointment, the doc was so funny in telling us how he hasn't had to write out prescriptions in years. It's all done by computer. So, we shall see if I can get relief with any changes or adjustments he makes. Time will tell, I'd prefer sooner, rather than later.

Please keep my friends at ASAP in prayer. Everyone in this support group struggles so hard everyday and could really use your help through prayer.

I hope everyone is doing well and having pleasant days!