Today – Worse Than Yesterday…

… and yesterday wasn’t that good! Lori did manage to squeak out a couple of hours of computer time in during the morning hours. That was about it for yesterday though. She also managed to muster up the energy to cook dinner. She pretty much passed out after dinner. Woke up for a bit around 9:00 and then went to bed at 10:30 (ish)

This morning she woke up feeling pretty bad. It was raining. I’m not sure if the rain had any effect or not but Lori was very sore. Also it was a “potsy” day. Couldn’t stand much at all. In fact just making a couple of phone calls today took everything she had.

Lori became a bit emotional earlier. Ricky & Mike (both have sprained ankles) had Doctor appointments this afternoon. Lori wanted to take them so I could keep working. Unfortunately she knows she just isn’t able to do something like that. It is not possible on a day like this. Even on a good day it would be difficult at best. It really gets her down as it would anyone, I believe.

By dinner time Lori was pretty well done for the day. It’s 6:00 now and she is ready for bed. I think she will go soon, right after she gathers everything for tomorrow’s Dr visits. EDIT: 6:20 and she just came in to say good night.

We see both Dr Segal (new Nephrologist – saw once) and Dr. Richards (new Rheumatologist – haven’t seen yet) tomorrow. Our 1st appointment is at 9:45. We leave here about 6:00. I’ll let you know how it goes when we get back. Hopefully I’ll have some good stuff to post at that time.

Not A Good Day

As expected it was a couch day. No energy at all today.

We really have to find out what the pain is in her backside. It has really become debilitating. Sounds like possibly Sciatica. Not sure. Lori did have a similar experience during one of our trips to Atlanta for chemo. I’ll have to check back and see what was going on back then.

Whatever it is she needs some relief soon.

More tomorrow

The Daily Updates Begin

Friday

Yesterday was a fairly typical day. Lori went to the bank and to the drug store. When she got back she rested. Later in the afternoon she made a few phone calls and then more resting.

Her backside was really hurting. Even lying down hurt. Also had a headache. She planned on making dinner – at 5:45 I made us some soup. Lori wasn’t able to get up and cook. No big deal. We usually have some “instant” type dinners ready to go for just such an occasion.

Lori didn’t make it to our SciFi Friday shows. She went to bed about 7:30.


Saturday

Lori slept for 13+ hours. She woke up feeling pretty bad.

Has a real foggy head and in a lot of pain. After making her breakfast I got her set up on the couch for the next few hours. Today looks like one of those “don’t leave the couch” days.

More later.

End Of Round Two . . .

. . . Social Security – 2, Lori - 0

That’s correct. The great bureaucracy, in their infinite wisdom, has declined Lori’s disability claim yet again. They cite as a reason, We understand you cannot do heave lifting but that should not limit you from doing your job.” HUH!?!?!?  Uh…OK.

EDIT: I listed a long rant of things Lori can’t do but deleted it. We all know Lori’s limitations. It’s a shame the Social Security Administration does not see it.

The next step is a court appearance in front of a judge. We have been in contact with the attorney. They informed us it will take about 6 months to get the court date. At that time the attorney will fly down (they are located in Washington DC) to meet with us and then we will have our “day in court”. They also told us most cases are approved once you appear before a judge. What a joke.

For us it is not a major issue if it takes another 6 months. Lori’s disability insurance sends us a check monthly. For people who do not have that type of insurance and find themselves disabled they would be without income for a year and a half! That’s just not right. I understand the government has to combat fraud someway but…

So I will be going back to documenting Lori’s everyday activities. Not sure if we will need it when we meet with the lawyer but I would rather have it ready.

2005 The Good!

As I posted previously 2005 was an “emotional year with Lori dealing with the fact that her life has changed, and, at least for the near future, will not be the same.” Here is a chance to focus on the good things that happened last year.

From what I see the best thing that happen to Lori in the year 2005 was the re-establishing of relationships with some family and friends that she hasn’t talked to in years. It really brightens her days to talk to everyone and reminisce about the past while talking about the future. Thanks to all of you who have made the effort to contact Lori.

I also want to mention how Lori’s relationship with her Mother has become very close this year. They talk to each other almost every day. Lori wishes she could do more things with her Mom. Unfortunately, due to Lori’s health, they don’t do much, but the time they spend together is really precious to Lori.

In it’s own bizarre way the diagnosis of POTS was another positive event from last year. It allowed us to stop worrying about “what else is wrong” and gave us something to start treating. The disease is terrible, and the treatment is very contradictive to the treatment for the nephritis, but this is a good news post so we won’t get into that. Let’s just leave it as we now have something to treat, and that's a good thing.

Then there are the girls. Ah yes. Lori’s girls. Chatty, Hannah, Bug, Tiffany, Muffin, Jo, Holly, Emmy, Annie, and Haley. The girls give Lori so much joy. We started the year with one. The Chatty Cathy I gave Lori a few years ago as a Christmas Present (Chatty) was the only one we had 12 months ago. By the end of the year she was up to ten. Each has their own personality and enjoys doing different things with Lori (and me). Only two more to go and we can make our own calendar!

We moved some rooms around and turned my office into what we like to call “Lori’s Playroom”. Perhaps I’ll post some pictures soon. It is Lori’s paradise. She can spend the whole day in there, sleeping, playing, listening to music, reading, and now, with her new tea set, she can enjoy her afternoon tea in there as well. We also set up a sewing area as well as a crafting area. The idea was to spend some time making outfits for her girls, unfortunately the energy required is usually too much. The couple outfits she has made are very cute. The girls love them.

Of course there are the Boys. We couldn’t be prouder of all three. Jason and Ricky are both doing great in their 2nd year of college. Mike graduated, was voted most valuable senior in the band, and, after taking a semester off and putting some money in the bank, he is now in school working on his Teaching degree.

Lori treasures every moment she spends with all her boys. Nothing makes her happier. Being home all the time does allow her to be here whenever the guys are here. They are all real good about taking time and watching movies or playing games with Lori. I couldn’t be prouder.

Perhaps a year from now, when I recap the 2006 year, I can post some positive movement in Lori’s health. One can only hope. Until then, we continue to focus on what is truly the best part of life, Family and Friends.

2005 A Year Of Adjustments

The year started out with the realization that Lori was no longer able to do her job, and it was not a temporary situation. It was shortly after the year started we went to the Spa to gather what was left of Lori’s personal belongings. It was a very difficult thing to face for all of us, but hardest on Lori.

We started what was supposed to be 6 rounds of chemotherapy in January. Due to a low white blood cell count we had to stop after only 5. The treatments were very troublesome for Lori. After the first two they did get a bit better (as did our planning for what was to come).

Lori’s blood problems forced us to stop the Chemo treatments. It was a bit scary as her White Blood Cell count was in the critical range for about a week. It got better but stayed in the serious range for about a month. Even today her WBC count is still low.

Another issue we had to deal with at the same time was losing Dr. Tumlin as our nephrologist. His leaving to go to a new Hospital forced us to make a tough decision to find a new nephrologist. It was a rough decision to make. We really respected and valued Dr Tumlin.

Throughout the year Lori’s fatigue never let up. As the year went on her symptoms actually worsened. During a trip to the Emergency room in August we discovered a possible cause for some of Lori’s problems. A few tests and a couple of Dr visits later Lori was diagnosed with POTS. It helps know what is causing some of the problems so we can treat the symptoms properly

From my point of view the diagnosis of POTS has given us some relief. What I mean is we now know what is causing most of the problems. It is no longer a guessing game. We no longer are hearing the Doctors saying “[insert disease name here] should not be causing you the fatigue you are experiencing”

Since the diagnosis we have been living one day at a time. Nothing new, which is a blessing I suppose. Some days are good. Most are not. The aches and pains are a daily occurrence. Most nights we sleep in separate beds with Lori sleeping on the air mattress. (Maybe this year we can get a real airbed).

Shopping, cooking, cleaning, working. All of these are no longer a part of Lori’s daily life. She now showers while sitting in a chair and cooks once or twice a week. She has gotten used to parking in handicap parking, using the electric chairs at the stores, and me pushing her around in her transport chair. It has definitely been a year of adjustments.

I should mention Social Security has denied Lori’s claim for disability. Her disability insurance company has provided a law firm who is handling the appeal. No word as of this writing.

Two years have passed since Lori was diagnosed with her Kidney disease. The treatment still continues. 2004 was a very difficult year with Lori fighting to keep her way of life in tact. 2005 was an emotional year with Lori dealing with the fact that her life has changed, and, at least for the near future, will not be the same. 2006 is a year still in it’s infancy. All we can do is hope it turns out to be a good year.

Better?

As hoped yesterday Lori woke up feeling a bit better today. She did not have the energy to do anything so she watched a couple of movies with the boys. It looks like she is on the way to recovering from the trip (yay). Maybe tomorrow she will be able to ring in the New Year (HA! Only if it comes around 10:00).

There is one thing she mentioned yesterday that occurred again a few times today. It is some kind of sharp pain at her right temple. Happened about 8 times in the last 24 hours. Probably some side effect of the migraine but with the long car ride a few days ago it has me a bit disturbed. There was no numbness but she did have some trouble concentrating a few times today as well as some rather bizarre twitching constantly in her right eye. I took her history and will be watching her.

I’m sure tomorrow will be better.

A Quick Update

At the rate she is going Lori will be sick right into next year! She said her migraine was almost gone but to me it looked like it was still lingering. I’m not sure she was being totally honest with me (or herself).

Her whole body looked sick today, especially around her eyes. I am really worried about her. She hasn’t looked this bad in quite some time. I know she will perk up a bit soon; I just hate to see her get like this.

Sleeping on the blow up bed is a must again. Lori is back to the point where it is hard to even get up the stairs. Right now that’s where the bed is though. It’s difficult with Ricky’s sprained ankle to get all the beds right since Ricky can’t do the stairs at all this week. I think tomorrow I’ll set Lori up down here in the family room and we’ll just move the coffee table.

She missed seeing her Brother again this year. It’s too bad he only comes by once a year for a day. Last year and this were both a couple of days after Christmas. Lori has been very sick (recovering from Christmas) both visits. Lori was saying it has been almost 2 years since she saw him. It was really hard for her to miss him again. Sorry Lori, maybe next year.

Tomorrow’s Friday. Even if Lori wakes up feeling better she is just so drained she won’t be able to do anything. From past experience I can tell you it will take a couple of days for her to get back to semi-full strength once she wakes up feeling “pretty good”.  If tomorrow is the feel good day she might be better in time to ring in the New Year.

I’ll let you know.

Christmas Has Come and Gone . . .

. . . but the pain lingers on. 1300 miles in 5 days was a bit too much for Lori to handle. The aches and pains are pretty bad. The fatigue has set in and looks like it might be here for a while as well.

We did have a good time and it was a really great trip. We rented a large passenger van and packed the 5 of us plus the 2 dogs and headed to northern Georgia. Our leaving Thursday was a bit delayed due to a work crisis but, thanks to the boys doing all the packing and loading up of the van, we got out of town at a decent time. The first couple of hours were a bit restless due to the dogs getting settled in. Our plan was to have them sit on the floor in the back. About 2 blocks from the house they each had their seats picked and stayed there for the rest of the trip. Once they became accustomed to the van and the driving it was smooth sailing.

The drive itself was pretty nice. We talked and had some Christmas music playing in the background. Lori didn’t sleep too much on the way up. I think she was too excited. The first stop was Atlanta for 2 nights. We had a real nice 5-room suite with plenty of beds and furniture to keep the 7 of us comfy for the couple of days. We arrived pretty late. It was almost 11:00 when we finally got settled in to the room. Once we unpacked Lori went right to bed while I stayed up and wrapped presents for the next day.

Friday Lori and I headed to see Lori’s sister and her family. We left the dogs with the boys at the hotel. I was going to go back later and pick them all up. Lori really enjoys spending time with her niece and nephew (8 and 5…I think). She was very excited as we drove over to Jennifer’s house. We had some breakfast and then Lori played a couple of games with the kids. Lori did great. She was glowing as she played with the kids. After lunch we watched a movie (good chance for Lori to rest). As it turns out she didn’t get much rest while watching the movie. She sat with both her niece and nephew and spent most of the movie talking to them (answering Morgan’s questions actually!).

During the movie I went to get the rest of our gang. The balance of the day went well. We had dinner and opened a few presents. Around 7:00 we headed back to the hotel. You could see in Lori’s eyes she was wilting fast. Once back at the hotel she perked up a bit again while she boxed up the last few presents and then crashed hard when she finished. I’m not sure if it was from the drive the day before, the cold, or the long day at her sisters’ house but Lori was pretty achy. We put one of the blow up beds up so Lori would get some joint pain relief for the night. The next day we were back to driving.

Saturday (Christmas eve) we got up, ate breakfast, packed up, and headed to my brother’s house in North Georgia. The drive was a lot shorter than I figured. We arrived at their house around an hour and a half after we left the hotel. It was a pretty easy ride. Once there, Lori pretty much just sat with her feet up. After lunch she took a nap. It was a very relaxing day. Around 9:00 that night she went to bed.

The next day was Christmas. It is one of Lori’s favorite days of the year. For many years Christmas has had a very special meaning to us. It is always enjoyable but is also very emotional. Again the day was extremely relaxing for Lori. She sat and visited and when she got too tired she went and took a nap. Unfortunately for Lori, while she was napping in the afternoon I took the boys out for a drive. The dogs (who were locked up in the basement) started howling. She had to go sit with them till we got back so her nap was cut short. Still it seemed to be enough to recharge and get ready for the rest of the evening, and what a nice evening it was.

Lori didn’t go to bed till after 11:00 that night. She was really tired. I figured we would talk a bit before we went to sleep but Lori fell right asleep (as did I). We were heading home the next day. I figured the traffic would be pretty bad but we were not in any real hurry to get home. The plan was to get up, eat some breakfast, and be on the road by noon.

I was right about the traffic on the way home. It took 12 hours (it should have been closer to 10). Lori slept for about 8 of those. It would have been better for her if we broke the trip up into 2 days but with 6 people (we added my 19 yr. old nephew for the trip back to Florida) and 2 dogs it would have been difficult. It was great to be home. Lori looked really bad though. When she is with people she uses her energy to keep up her appearance and smile. Once we were home you could see just how much that actually did drain her.

Yesterday was to be a sleep day. The plan was for Lori to rest / sleep while I unpacked and did some laundry between movie and TV watching. The day went really good. The evening was not as good. When the boys came home from playing basketball (at dinner time) we found out Ricky hurt his ankle pretty bad. I took Ricky to the emergency room while Lori stayed home and worried. The worrying was not good to say the least. Ricky will have to be off of his foot for at least a week.

Today Lori woke up, took a shower, and got dressed. Her brother was coming into town to visit with Lori’s parents later this afternoon. Lori wanted to go see him. Unfortunately, after her shower, she began to get a headache. As the day went on it turned into a full-blown migraine. She was also pretty sore and tired. After she scheduled a follow up appointment for Ricky with an Orthopedist she went to take a nap. That was a few hours ago and she is still sleeping. I hope she wakes up and her headache is gone.

It’s about time for me to get dinner going then get back to work. The next few weeks are going to be very busy. I hope Lori can get to where she is “self sustaining” soon. I know she is worried about Ricky.

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10:30 in the evening

Well, Lori woke up to get some dinner a couple hours ago. The headache was still there. She said she felt better, but it didn’t look like it to me. After she ate she sat with us for a bit, the she got sick. She barely made it to the bathroom it time. She is now in bed once again.

Tomorrow’s another day.

New Doctors, New Clinic, Renewed Hope

We had a pretty good experience on our trip to se Dr. Segal this week. Our initial impression was a good one. He comes across as being very mild and soft spoken. He seems to know what he is talking about. Even when we threw the POTS diagnosis at him he had a response for it. There was nothing we asked that he didn’t know about or even hesitated when giving a response. Speaking of POTS, Dr. Segal said that some of the Orthostatic Hypotension could be caused by the Kidneys not working properly. It is his opinion that, once we get the kidneys back to functioning properly Lori’s orthostatic intolerance will improve.

He spent about 30 minutes with Lori and me mostly talking. It was obvious he had read all of the information we sent up to him by the questions he asked. He took a complete history of Lori’s Lupus, from the diagnosis until now including any and all treatments. He simply asked questions and took notes. No comments were made on any previous treatments or Doctors.

Once he completed the history he talked about his treatment plan and what they actually do in his office. As it turns out, he works as part of a Lupus Clinic that is run in conjunction with the Rheumatology department. From the information we have right now it looks like the Rheumatology Department actually runs the clinic with the assistance of the Nephrology department. This makes sense since a Rheumatologist is the Doctor who treats Lupus in general. The research grant I linked to in the other post (click here) is actually run by the Rheumatologist in charge of the Lupus Clinic. His name is Dr. Hanno B. Richards (info link).

Dr Segal asked who Lori’s current Rheumatologist was and if she would be willing to be seen at their clinic for both her general Lupus treatment as well as her Kidney involvement. We were more than willing to go with this route. In fact it was great! For the 1st time in over two years we will have a Rheumatologist and a Nephrologist working together! You wouldn’t think this is a great accomplishment but it is. We have seen 5 Nephrologists and 4 Rheumatologists in the past 2½ years and they all (with the exception of Dr Segal) question the other professions’ ability to treat or method of treatment regarding the Lupus and/or the Nephritis. Now we will have 2 doctors who not only will agree on treatment but will work together to get the best overall results!

So we will be seeing Dr. Richards as well as Dr. Segal starting next month.

In addition to treating the patients the Lupus clinic is very active in research. Dr Segal asked Lori if she would be interested in participating in any applicable studies. Lori said she would be more than happy to help in any way she could. Dr Segal was happy to hear that and, when he was done with his exam, he introduced us to one of the research assistants. More on that in a minute.

Dr Segal was pleased with Lori’s proteinuria level. It was down at 1400. For those of you who don’t remember it was as high as 12,000. It should be less than 150. The 1400 reading is the lowest it has been since the diagnosis of Nephritis. (Yay!) We were amazed at the results as well since Lori has not had any medication to treat her condition in over 6 months! Dr. Segal said he was sure the decrease in protein was due to the Chemotherapy treatments from the beginning of the year. Dr. Tumlin also said it could take a few months for the effects to be seen.

The next course of action is a heavy dose of CellCept® ( Mycophenolate ) CellCept® is an immunosuppressive drug that was developed to help the body aid in healing and prevent rejection with transplanted organs. Lori was on this drug previously. The dose she is taking now is higher than the previous dose. No prednisone or other steroids were prescribed at this time however Dr Segal did hint that they may be in Lori’s future (again). We’re not sure what other treatment Lori will be undergoing once she sees the new Rheumatologist (Dr. Richards).

Our follow up visit with Dr Segal is January 17th at 10:30. We also have an appointment with Dr. Richards at 10:45 the same day. Dr. Richards’ nurse said we would probably be seeing both at the same time this visit, followed by alternating Doctors with each successive visit.

Now, back to the research studies. Lori was asked it she would be willing to participate in two different studies. She was very excited about this. With all of the trips to Emory we were never asked, nor was any mention ever made, of any specific research studies.

The 1st one was a simple, one time donation of blood for a DNA study. Lori’s blood will be added to a bank that is used for DNA comparisons research. We were assured that no clones of Lori would be created. (HA!)

The 2nd one will be ongoing. Lori will give a couple of tubes of blood each time she is at the clinic. The blood will be used to aid in proving or disproving any new treatments. As it was described to us when there is a new treatment in the works they can use the stored blood to see how or if it truly will work. With a store of blood that carries different diseases in different stages they can do a lot of research quickly.

As Lori said anything she can do to help with any research she would be happy to. At this time there is no benefit for Lori directly other than helping Lupus research in general. Lori got a laugh out of the assistant when she asked if her “blood donations would be tax deductible”.

Between the blood for Dr. Segal’s orders and the blood for the 2 studies Lori had to give 12 tubes of blood. A new record!!! Her previous record was 9. After a serving of cranberry juice I wheeled Lori back to the car and headed for the hotel to rest.

The trip to Gainesville itself was quite pleasant. It is going to be much nicer than driving to Atlanta. The 8 hour drive was just so long. It took a lot out of Lori. This one is a breeze. We should be able to make our future trips very enjoyable. Most we will do as day trips but we did find a very nice Holiday Inn Express right down the road from the hospital.

So that’s about it for our trip to Gainesville. The bottom line is we, once again, appear to be heading in the right direction.

New Nephrologist!

Tuesday we go see our new nephrologist. We hope we like and respect him as much as Dr. Tumlin. It was really hard to leave him. He was one of the few Doctors that really listens and also knows what he is talking about.

We will be seeing Dr. Mark Segal. He is a Clinical Assistant Professor at the UF College of Medicine with a specialty in Lupus Nephritis. Shands Info Link

He is, as was Dr. Tumlin, involved in clinical trials with the Lupus Research Institute. ( Link to one I found ) Google is not working tonight and I am having no luck using the other search engines. I know there is much more info on Dr. Segal available, I just can’t find it tonight.

It is unfair, I know, to compare the new Doctor to Dr. Tumlin. After this post I will try to avoid it.

The ride to Gainesville will be a whole lot better than the ride to Atlanta was (2 ½ hours compared to 8 hrs for those of you who don’t know). If we can get mid morning appointments it will be a day trip instead of 2-3 days. That in itself would be great.

The important part is Lori feel comfortable with him. With the POTS diagnosis a while back we need to get someone we trust. The treatment for POTS is bad for Lori’s Kidneys, and visa-versa. Lori has not done much to treat either condition while we waited for the new Doctor. Once we talk to Dr Segal, and get back in touch with the Dr Kuo (the Cardiologist) we can hopefully start treating something again.

I’ll let everyone know how it goes on Tuesday night.

Hey – Not Quite Two Weeks This Time

Sorry everyone, It’s been very hectic around the house for the past month. I will try to post more often from now on.

For the most part Lori is doing OK although the day of my last post she started feeling pretty bad. Her joints were really hurting her. We moved the blow up bed downstairs and she has been sleeping down there ever since.

It’s been one day do stuff, one day sleep, one day do stuff, one day sleep. Mike is no longer working so he has taken Lori out a couple of times in the past week. It’s good to have him around to drive her places so I don’t have to. Besides, they have a lot of fun when they go places.

Earlier in the week Lori went to get her labs done for the new Nephrologist. We go see him on Tuesday. See the next post for more info on that.

Thursday Lori woke up with a couple of red bumps on her back. I guess she figured it was nothing so she didn’t say anything to me. Then, yesterday, she woke up with hundreds of these red bumps. Some of them had little heads on them. It was really freaky looking, and the fact that they popped up so fast seemed bizarre. So we called Dr. Peditto and headed out.

Dr. P didn’t like the looks of it. She had the Doctor who has a practice next door to look at it. Dr. P does not see children (who are always coming in with rashes) the other Dr. does. The “official” diagnosis was a Hot Tub Rash, although Dr. P was a bit hesitant to simplify it that much. With Lori’s history Dr. P is always watching out for the worst case. Sometimes she may be a bit too cautious, but that’s OK with us. She prescribed a broad spectrum anti-biotic and told us to watch it closely.

Today they started itching. There do not appear to be any more bumps. That’s a good thing. Hopefully it will go away without any side effects.

Another 2 Weeks Have Past . . .

Thanksgiving came and went without any real troubles for Lori. We had everything covered from shopping & setup to cooking and cleanup. Lori was able to just sit back and enjoy. She did go and take a nap on Thanksgiving Day (right after dinner). I don’t even know if anyone really noticed she was gone. The whole day was great. Thanks to everyone who helped out and especially to Tim and Nancie.

Friday we were up and out the door at 9:00. We went to sit with my Mom & Dad at their hotel before they headed home. Then we were to meet Tim & Nancie at Best Buy. (Yes, we went to Best Buy the day after Thanksgiving). We grabbed a handicap spot by the door, got Lori’s chair, and headed in to the abyss with the masses.

It’s amazing how people do not care if you’re in a wheelchair. We don’t look for any special attention but ‘people’ in general won’t even move out of your way if you are trying to get passed. Some seemed to move into our way. Fortunately Best Buy had hidden all of their shopping carts and instead passed out nylon shopping bags as you came in the door. It would have been a nightmare if everyone there had a cart! They did have a lot of isles blocked off at one end (to keep the traffic flow regulated I guess). It made for a lot of crowed u-turns in the wheel chair. After an hour or so (and a sack full of ‘specially priced’ DVDs) we headed to the car.

Tim and Nancie were far from done for the day. In the parking lot Nancie said, "Is there a Pottery Barn near by?" [queue ‘dramatic pause’ music] Time freezes . . . people stop dead in their tracks, heads turned our way . . . Lori and I look at each other . . . then at Nancie . . . and then back at each other. Pottery barn is by . . . *gulp* . . .  “The Mall”! [cut to scenes of people running screaming] Even a handicap-parking permit won’t help you there on Black Friday. “Y-Y-You want to go to Pottery Barn?” Lori asks. Nancie says “Uh-Huh”. So, we pack up, and with a series of deep breaths we head for the mall.

AHHHH yes. The mall. Thousands of people eating Cinnabon rolls and looking for that 'special something' for people, most of whom they don't really even like. It was pretty crazy. After an hour or so of navigating the great unwashed Lori was really beginning to wilt. Not sure if she was getting really tired, or just tired of looking at people’s butts and crotches. When we reached the halfway point in the mall we told Tim and Nancie it was naptime and we would meet them back at our house later that day.

Lori crashed right away when we got home. She woke up a couple hours later, had a plate full of leftovers, and we headed off to the Christmas Store. (FYI the Christmas Store is one of those places where Lori can feed off of the energy in the store for strength.) After spending almost 2 hours there we came back and watched a Christmas movie. I think it was around midnight before she finally went to bed.

Saturday She slept till 9:00. Then, around 11:00 she went to take a nap. With the exception of a couple of potty breaks she ‘napped’ until 8:00 that night. Then it was bed at 11:30.

The days since then were pretty good. Sunday, more napping. Monday and Tuesday I was gone, she slept. Today is a pretty good day as well. She just woke up from her two-hour afternoon nap. She did go to the store this morning for a bit.

It is really good to see Lori has ‘learned’ how to do things without getting too sick. She has learned her limitations (which are really big actually) and does not try to do any more than what she knows she can do. We know just doing anything will wipe her out. We have decided that, if she is going to get wiped out and have to take 9-hour naps, it might as well be from doing something fun.

The next couple of weeks should go pretty quick. I have a ton of work to do. Hopefully Lori will be ‘self sustaining’ and even able to cook a couple of meals in there.

On Dec 13 we go see the new nephrologist.

Then after that . . . Christmas!

WOW! It's Been 2 Weeks Since My Last Post!

I swear… this is going to drive us both crazy. I just read the last post, a mere two weeks ago. I spoke of hope and how good it was to see Lori having some “periods of energy again”. Please notice I said how good it was…

For 10 Days now Lori has had absolutely zero energy. Since Thursday the 3rd it has taken everything Lori has to do the little things again (like getting dressed). We planned on starting our Christmas decorations the weekend of the 5th. Our goal was to have them completed by Thanksgiving.

On Thursday when Lori wasn’t doing well I happened to see Jason on-line. I asked him if he and Ricky would help that weekend. They said they would be happy to come over and help (like they did last year). Lori sat and directed traffic from the couch. We managed to get a lot done that day, but not everything. No big deal. We figured Lori would get some of her energy back in a day or to and she would be ahead of the game with what we had already completed.

A day or two came, and went. Then another, and another, and another, and another. In the mean time I was back to doing everything. Making breakfast, lunch & dinner; cleaning up afterward, laundry, shopping, etc, etc. Stockings on, or no stockings, it didn’t matter. Lori couldn’t do much at all.

Her pain level had increased as well. We moved the blow up bed back downstairs and set her up on the Living Room again. Once more I called on the Boys to help finish up the decorating. They all three helped on Friday (the 11th). We cleaned the house from top to bottom and did a bit more decorating.

In the 10 days since we started decorating Lori was able to put pictures (as ornaments) on our big tree (4hrs), decorate the little Christmas tree in her room (2hrs), Finish what one of the boys had done in the bathroom (1hr) and decorate her Looney Tunes tree for the kitchen counter (2hrs). That’s about 9 hours worth in 11 days.

A couple of weeks ago we went to JoAnns to get some Holiday material so Lori could make dresses for her Chattys. This too turned out to be more than Lori was able to do. She was forced to abandon the idea of making her own dresses this year and just use the dresses she bought in the past couple of years. The girls still look beautiful in their pretty dresses but I know Lori wanted to make her own.

It looks like all of this can be attributed to the POTS. It really is a nasty disease that, in many respects, is much worse than Lupus. It is just so relentlessly debilitating. This flare has been constant for almost 2 weeks without letting up at all. I said it before and I know I’ll say it again POTS SUX!

Through all this I’m happy to say Lori’s attitude is as good as can be expected. She would love to do more in the way of decorating but realizes her limitations and is OK with letting us do everything. Many times since we started we have had to revise our goals downward and do less and less. Whatever we have completed this weekend will be it. No more messing around with it after that. Once Thanksgiving has passed it will be time to enjoy what we have done until we take it down.

Speaking of Thanksgiving, we’re having it at our house this year again. Lori knows she is not allowed to do anything. Tim & Nancie are coming in on Wednesday and said they will do all of the shopping. On Thursday they are going to come over early and do the cooking. The boys and I will clean and set up the house, serve and clean up the mess afterwards. The plan is pretty informal this year. We will be using real plates (you have to for this kind of a dinner) but plan on paper cups and plastic utensils (hooray – no silverware to wash).

It is going to be a pretty big gathering. My Mom will be unable to walk (she had surgery a few weeks ago on her ankle and cannot put any weight on her foot at all) so she and Lori can sit and keep each other company. Besides Tim, Nancie, Timmy, & Ashley, and my Mom & Dad we will have Jim, Lora, and their gang. Also, Brandon (Nancie’s son) and his wife and baby will be joining us. My other brother Tom will be having surgery on his foot Thanksgiving eve, so he and his wife will not be there. Lori’s Mom and Dad decided to stay home this year, so they will not be there either. We’re still not sure about Lori’s brother Reed. We’ll have a place set if we don’t hear from him before then just in case. The rest of Lori’s family usually spend Thanksgiving elsewhere.

As you can see it is going to be a gang! Lori is really looking forward to it. She loves to ‘entertain’ so much. It always has been one of her favorite things to do. I just feel bad that she has to do it all from the couch.

Hopefully the next week will be uneventful and I can post something about the great time we had at Thanksgiving next.

Quick Update!

It is really good to see Lori have some periods of energy again. If you keep up with this blog you have read that not to long ago I was very concerned about her state of mind. She had almost lost her positive attitude. Now, simply being able to do some of the small things that the rest of us take for granted, has really given Lori a boost mentally.

She was all excited about being able to pass out the candy tonight. Here is my post from last Halloween:

It's about 9:30 pm. Lori's migraine seems to have dissipated. She missed the few kids we had Trick-or-Treating. Bought her a tweety Halloween shirt to wear when she passed out the candy too. Oh well . . maybe next year.  

Well this year she did wear that Tweety shirt and passed out the candy herself. In fact she set up a little table (with a schpookie tablecloth of course), set up a chair and had a candle hanging from a hook behind her as she sat outside waiting for all the kids to come.

It’s really amazing what a simple thing like hope can do for you.

Labs Are Back

Sorry it took so long to post the latest Lab results. I’ve had a busy week and don’t feel too good myself. Some kinda head cold thing kickin’ my butt for over a week now.

Anyway, the labs are back and they look surprisingly good! The proteinuria has dropped to its lowest level since May 2004. The Total Protein is 3186. Keep in mind the ‘normal’ level is supposed to be <150, so we have a long way to go, but this improvement is without any treatment for the past 5 months due to the low WBC Lori had.

At this point we are hopeful that this downward trend will continue and eventually the Nephritis will go into remission. We have yet to hear from the Nephrologist in Gainesville.  I will give them a call next week if I don’t hear from them on Monday.

The Low White Blood Cell count has improved also. The count is now at 3.3. 3.8 is the low end of the normal range, so we’re almost there. We’re still not sure what caused the severe drop to begin with. We’ll probably never know for sure. If it were the chemo it should have ‘fixed’ itself quite some time ago (according to Dr. Tumlin). Perhaps with everything going on it just took some extra time to build itself back up. Keep your fingers crossed it keeps going up.

Lori’s energy level is about the same as it has been since she got her support hose and revised her meds. She has been able to do some activities, followed by some serious naps. Kinda like the old days. Oh well, at least once again she is able to do something.

We haven’t filled the prescription for the new steroid that is supposed to treat the POTS. I think Lori is afraid of going on another steroid. The side effects are similar to Prednisone but according to Dr. Kuo they shouldn’t be quite as bad. Everything I have found out about the drug says the side effects will be as bad. I’m sure Lori has found the same information. I don’t know if that’s why Lori hasn’t filled her prescription or not, but my guess is that’s it.

Tomorrow is Halloween. Some of you know what that means, but for those of you who don’t it is when we start decorating for Christmas. Last year Lori could not do anything. It was a pretty depressing time. Here is the post I did last year. The Christmas Miracle I asked for never happened. Maybe this year. Lori is going to try (a little at a time) to do the decorating again. I know what ever she does will be wonderful.

I update you on her progress later in the week.

Low Energy Level . . . Still

The energy from last weekend never came back this weekend. Lori did manage to muster up the strength to sit outside for a few hours on Friday and Saturday. It was a neighborhood garage sale. We had a few big things we wanted to get rid of. Time spent for dollars earned it was not worth it, but we did get rid of a couple of things.

After we finished Friday (around 2:00) Lori went right to sleep. With the exception of about an hour for dinner she slept until 7:30 the next morning. Saturday we finished around 12:00. Lori didn’t fall asleep but she stayed on the couch until after dinner. Then it was off to bed till this morning.

Today, even with her stockings on she never had any energy. Big difference from last week.

Tomorrow we go for some more blood work. I’ll post all of the results in a couple of days, including the latest protein numbers.

The good news is Lori’s spirits are much better than they were a couple of weeks ago. So, were simply back to just taking things one day at a time.

Hit the Wall

On Monday I posted “the combination of the support hose and the decrease in the blood pressure medicine seemed to be having some effect”. This is still true however the downside is Lori is back to ‘crashing’ hard.

This weekend she did more than she has done in months. By the end of each day she was really tired and usually fell asleep right away. The next day she would wake up feeling ok. She would put on her stockings and would get a bit of energy again. But now, after almost 5 good days (4 ½ really) she has hit the wall.

Tuesday evening she really looked like she was wilting fast. We decided she wouldn’t try to do anything on Wednesday. She wasn’t even planning on wearing her stockings. Just planned on a day of rest. Hopefully feeling better by the end of the day.

It turned out a bit more than that. She was hardly able to do anything yesterday. With the exception of a couple of phone calls she slept all day. She tried to do a few things in her room and just ended up falling asleep in her chair. Around 7:00 she woke up and asked about dinner. After a quick sandwich she went back to the couch, watched a little TV, and went to bed. There was no sparkle in her eyes at all.

This morning she doesn’t look any better. When I asked how she felt she said “worse than yesterday”. Hopefully she will perk up in a little while and not feel as miserable as she did yesterday.

Maybe she overdid it this weekend, or maybe she is getting a little bug. Whatever the case I hope she gets some energy back again soon.

POTS Questions and More Treatment Options Discussed With Dr. Kuo

Yesterday we had our 1st follow up visit with Dr. Kuo since she diagnosed Lori with POTS. Dr Kuo was very anxious to find out what our Nephrologist had to say. Unfortunately we had to tell her that we did not go last week. We explained the situation. She understood and said she wants to know what the new Doctor has to say when we see him.

Dr. Kuo was pleased with the slight improvement in Lori’s condition. She reminded us again that it would take a while to ‘play’ with the medicine until we get the maximum benefit with the least amount of distress to other conditions.

We asked her if the POTS is related to or could be caused by Lupus. She said that people with Auto Immune Diseases such as Lupus are more apt to develop an Autonomic Dysfunction such as POTS. While the two aren’t necessarily related they can go hand in hand.

We discussed the compression stockings. Lori legs really hurt when she takes the stockings off. Dr. Kuo said that was not unusual and should go away as she gets used to the stockings. She also told us Lori should wear the stockings as much as possible.

One of our questions was whether or not we should see a neurologist for treatment. She said there really was no need for it. There are only a couple of treatment options available. The bottom line is you have to raise blood pressure. She felt another Doctor would not necessarily help the situation.

She added a new medicine to Lori’s treatment. It’s called Florinef. Unfortunately it is another Steroid. Many of the side effects are similar to Prednisone, but not as bad according to Dr. Kuo. She is starting Lori at the lowest dose available (0.1mg). We are supposed to call her back in 1 week and she will discuss raising the dose at that time, depending on Lori’s results that week.

The last topic was just how high should we let Lori’s blood pressure get. The goal, according to Dr. Kuo, is a Systolic reading of less than 140 with a Diastolic reading less than 90. We are to monitor the results ourselves and report to Dr. Kuo either at our follow up visit or immediately if Lori’s BP goes too high.

On a side not I have had a couple of phone calls with the new Nephrologist’s office in Gainesville. The ‘new patient’ process goes something like this. Get the referral from your doctor and send any pertinent information to their office where someone will review it with the Doctor. At that time IF the Doctor decides to take you on as a patient they will call you to set the appointment. The secretary at Dr. Peditto’s office said this is happening more frequently lately. As of yesterday we had sent them the referral sheet from Dr. Peditto and Dr. Tumlin’s latest office visit notes.

Today I received a call looking for a couple of more items. I put together a fax of 15 pages of lab results and test reports. I hope they have enough information to make a decision now.

Some Possible Relief?

The combination of the Support Hose and the decrease in the Blood Pressure Medicine seem to be having some effect. There have been a couple of days where Lori has been able to do things. In fact on Friday she went to Wal*Mart by herself. With the use of their cart she was able to "shop" for over 2 hours. She only bought a few things but I know it felt good for her to get out on her own.

Yesterday we weren't to a couple of stores together and she did OK. Today we went to her Mom and Dad's house for lunch. Lori was very happy that she felt well enough to go over there. Once we got home she was really wiped out and went to sleep, but it was nice for her while it lasted.

The biggest drawback so far to the stockings is how bad Lori's legs hurt after she takes them off. Hopefully that will not last.

We go to Dr Kuo on Tuesday. I'll let you know how it goes.