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.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

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.

POTS SUX

It has really been an emotional week. Since “the diagnosis” things have not been good. It took a couple of days for Lori before it really sunk in. I think she just built this wall around her, refusing to let anything in. This POTS thing is really bad from what we have read. There are people who have it much worse that Lori, but that’s hardly good news. A lot of the people who have it treat it with high sodium, high protein type diets. It is still freaking us out that the treatment for one disease makes the other one worse!

We bought a new Blood Pressure machine. It is one of the wrist types. So far it seems to be working quite well. A lot easier to use and gets readings the other one wouldn’t. The craziest reading so far was a BP of 85/55 with a heart rate of 163. Unreal stuff goin on here!!!

We also went out and found her stockings last week. She ended up having to go to the full pantyhose type (to the waist). The thigh high would have cut in to her thighs too much and/or would keep falling down. The frellin things cost $110.00. Now that we know what to get we have checked online and can get them for about $20.00 less.

Lori did notice a difference when she wears her stockings. They really make her legs hurt when she takes them off though. She wore them for two days and then kept them off for two. Today she had them back on again. She is sleeping now, wasn’t doing too good this evening. For some reason she got an upset stomach and threw up about an hour ago. Not sure what that is from. She did say she had a bit of a headache earlier.

We have an appointment with Dr Peditto on Thursday. I’m curious as to what she is going to think of this latest “condition”. She has always given us good advice in the past. We’ll see what happens on Thursday.

As I said it has been an emotional week. In addition to dealing with the POTS diagnosis we made the decision not to go to Atlanta to see Dr. Tumlin any more. If you keep up with this blog you know Dr. Tumlin is moving his practice to North Carolina. We just don’t have the resources to fly up to see him and it is just not practical to drive. 2 tickets and a hotel for one night will cost around $500.00. Throw in some meals, airport parking, and a rental car (or a handful of Taxi trips) and you’re easily looking at $650.00 plus the two days downtime. I wish we could do it, but we just can’t.

So, now we get to find a new nephrologist. This has been weighing heavily on Lori. We liked and respected Dr. Tumlin so much. The one good thing is he was about to start a new treatment (the chemo did not work). We have not started it yet so starting with a new Doctor at this time would be good. There is a large Nephrology group in Tampa that we are going to look into. Hopefully they will work out.

Lori also heard from Jim at the Spa this week. He is now officially in charge of the Spa (congrats Jim if you are reading this). Lori REALLY misses working. It was great to talk to Jim but it also made Lori sad. The addition of POTS has added to the reality that Lori may never be able to have a regular job again. It was another blow to Lori’s emotional well being.

On Sunday Lori received a call from her Mom. She told Lori that she and Lori’s Dad were going to sell their condo and move to Kingsport TN. They have both mentioned this before, but this time was different. They had made an appointment with their realtor. It was more than just talk now. This really pained Lori. It really means a lot knowing that her Mom and Dad are near by. If something were to happen to them OR to Lori I know she would want to be close. It bothers her that she can’t visit with them as much as she would like to. It is just too hard on her. She can hardly take a shower by herself and many days she could use help just getting dressed. (I’m getting very good at blow drying her hair). Even though she can’t visit it is very comforting knowing they are there. She was crushed thinking of them leaving.

Yesterday we found out that their plan is to stay in our area (if they can find the right house that is). That brightened up Lori’s day a lot to hear that. Now we just have to hope they can find something they can be happy with and still be close.

Combine all of the above with all of the conditions, medicines, diseases, doctors, etc. Lori goes through and no wonder she had a really bad week. I have always wondered how much she can go through before it starts to get to her. I think I know now. She has had some “feel sorry for yourself” days before, but nothing like this. She is simply tired of it all. She actually appeared to give up any hope of ever getting well enough to lead a semi normal life. There was nothing I could do for her except listen and promise to be there by her side through it all.

After many hours of talking and crying she was feeling a little better (emotionally) today. I know she is still feeling overwhelmed (you can’t fool me Lori). Maybe talking to Dr. Peditto will be a good thing for her. I hope the next couple of days don’t bring too much extra “stuff” for her to deal with.

She just woke up and came in here where I am. It looks like her “Lupus Rash” is acting up again. . . . . . . and away we go!

Cardiologist Visit - Results Are In

Today we went to the Cardiologist (Doctor Kuo) to review the results of all of the tests she ordered. As usual we have some good results and some not so good results.

The Stress Test revealed “No Blockage”. Everything A-OK

The Holter Monitor confirmed the rapid heart rate we told them about but showed no other signs of acute heart disease.

Liver function test as well as the Thyroid test both came back “Normal”.

Most of the blood work came back just fine too. They did not do a WBC count so I don’t know where Lori’s white blood cells are at the moment.

The Tilt Table Test paralleled the results we produced when we did the “Orthostatic Vitals” test. When Lori stands up her heart starts racing while her blood pressure drops. One of the readings from their test was a blood pressure of 55/60, with a heart rate of 149 beats per minute. Lori was on the verge of passing out. I’m sure we had similar results however our “Walgreens Blood Pressure Monitor” doesn’t read properly at that level. This test was the “Bad Results” I mentioned earlier.

Lori now has a new condition to add to her lengthy list of diseases, syndromes, etc.

It is classified as a “Dysautonomia” disease, which is a disease that affects the autonomic nervous system. It is literally a dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. As Doctor Kuo explained to us your autonomic nervous system slows with age. In some elderly people it slows to a point where they have to stand slowly to keep from getting dizzy. This is a normal part of the aging process. What Lori has is not normal. Her autonomic system is “messed up”

The specific condition Lori has is called “Postural Orthostatic Tachycardia Syndrome”, or POTS.

POTS can be defined as:

1. A disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up.


2. A condition of orthostatic intolerance in which change from the supine position to an upright position causes an abnormally high increase in heart rate.


3. Dr. Kuo defined it as “Lori’s reflex reaction to standing is not adequate”

POTS is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing. Lori's is typically right at 150 beats per minute or higher when she stands.

POTS is a chronic illness that can be debilitating at times. POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time. Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease. Most patients will have to make some lifestyle adjustments to cope with this disorder.

HERE is a link to a great web site Doctor Kuo gave to us for any and all the information you need on the condition.

As far as what caused it . . . we’re not sure, we forgot to ask Doctor Kuo and she was not specific. From the research I did it could be a secondary condition to Lupus. There are other causes as well including trauma to the body (which could be associated to chemotherapy). From what I read today many people who have it can not pinpoint a cause. It is a disease that has not been recognized for very long therefore there are many unknowns. It was first identified as a syndrome only 15 years ago, in 1993.

Doctor Kuo said it is something that Lori will have to deal with for the rest of her life. There are no long term complications that the doctor is aware of other than the quality of life issue. The severity can change, even from day to day.

What do we do you ask? That is a problem. POTS can be very difficult to treat. The basic idea behind treatment is to raise your blood pressure. This is contraindicated to the treatment of Lori’s Kidneys.

Lori has been on two different blood pressure medicines for her kidney disease. According to everything we have learned for all of the Doctors over the last two years it is very important to keep your blood pressure under control in order to help alleviate some of the strain your kidneys go through each and every day. Now we are dealing with a disease that, in order to treat it, you have to raise your blood pressure. In order to treat one, you have to not treat the other.

Doctor Kuo has already warned us that it will take some time to get the balance just right. She has ordered Lori to stop one of the two blood pressure medicines. Also she has ordered that Lori no longer use her Diuretic. Next week we go up to Atlanta to see Doctor Tumlin. He is supposed to be revising Lori’s medicines to start treating the Nephritis again (it has been over four months since Lori’s last chemotherapy treatment due to the low white blood cell count). We will see what he has to say about the blood pressure medicine at that time.

The other treatment Doctor Kuo prescribed is a set of custom fitted thigh high support stockings. I’m sure they are very similar to those worn by people with circulation problems in their legs. We have a prescription for them. We just need to find a place to get them made.

Dr. Kuo said Lori may have to come off the blood pressure medicine completely. This would not be done anytime soon. There are other medicines that she can prescribe down the road if necessary. She does not want to do too much at once or we will not be able to tell what is working and/or what is not.

There are a few other things we are to do for treatment

One of them is to get Lori a shower seat. One of the worse things you can do is to stand in a hot shower. Eating different foods in a different pattern may help as well. More meals with smaller amounts are easier for your body to deal with. Lori also has to continue her 64oz of water per day regiment.

Doctor Kuo requested that we monitor Lori’s Blood Pressure frequently as well as her heart rate. If it gets too high we are to call her right away. If not, we go back for our next visit in two weeks.

For now, at least we know the cause of some of Lori’s severe fatigue problems. With the proper treatment she may get some of her quality of life back . . . as long as her Kidneys can hold out.

Back From Vacation, Back to the Couch.

The day's since our return from vacation have been very un-eventful. In the week we have been back Lori has been able to pick up the family room once, made herself lunch once, and mustered up the energy to do one load of laundry.

It has been really difficult for her. She has been able to navigate the stairs ok in the morning and again at night, but has had a great deal of pain in her hips. It is really hard watching her try to do things.

She is much better at asking for help than she was in the past. I'm really glad to see that. I know it hurts her though to have to ask for almost everything to be done for her.

We went for her Tilt Table Test last week. See the "Cardiologist Visit - Results Are In" post for more results on that one. Let's just say - not good - and leave it at that for now.

The bright spot of the week was spending time with the boys (as usual). Ricky and Jason's birthday was this week. On Saturday they came over. We went to dinner and watched a movie. Mike was able to get the day off to join us. It was a really fatiguing day for her, but worth it.

The next day Jay, Ricky, & I went to the Bucs game. Lori stayed home and read her book. A friend of hers brought over a casserole dish on Thursday, so Lori was able to put it in the oven when we left the game. When we got home I finished up the dinner and we ate. It was a good way to get a nice dinner without any effort on our part.

The theme of the week was "Lot's of Naps". Lori wanted to do a few things that she never was able to get done. Oh Well. Maybe next week.

Ahhhh . . . Vacation

It’s Monday afternoon, about 3:00. Lori’s sleeping, good time to do some writing. We’ve been on vacation for a couple of days now. It’s been a very enjoyable time so far.

- -

Thursday night we made it as far a Tifton GA. This is about half way to my brother’s house where we were going to stay on Friday. Friday morning we got on the road about 9:30. We arrived at Tim & Nancie’s house on Friday afternoon around 3:00. It is beautiful.

They recently moved in to their close to 5000 sq ft house. It sits on 8 acres of rolling meadows and mountains. Their 3 horses (and 1 mule) have a beautiful fenced in pasture to graze in. It has just the right amount of trees on it. Tim says the deer come across his property everyday around 3:00 pm. It was very serene and a great way to start the vacation. Lori got pretty tired walking around the property and house on Friday. She also stayed up too late that night talking. She felt she would be OK since we were just driving the next day.

- -

Saturday she was more wiped out and sore than she thought she would be. We sat on the porch and drank our coffee watching the horses. Around 11:00 Tim and Nancie took us to breakfast. We were on the road about 1:00 on our way to Beech Mountain NC. Before we left Tim and Nancie gave us the perfect gift for our trip. Thanks again guys!

The four hour trip to Banner Elk took over six hours! Lori took one of her diuretics earlier so we had to stop a lot for potty breaks. This was ok with me. With all the sitting in the car we didn’t want any water retention.

One of our stops was at the Nantahala River area. About seven years ago we stayed there with the boys and had a great time. It was fun to sit and reminisce. I think Lori got a bit too hot though. We were in the shade but the sun was very hot and it was 80+ degrees.

Once back on the road we hit a detour. We’re still not sure why but the road we were on was closed. They were diverting all traffic off of the highway onto some country road. Good thing Nancie gave us a map! We ended up going through Cherokee and Maggie Valley. There was some kind of motor cycle convention going on in Maggie valley. We passed hundreds and hundreds of motorcycles on the road. In Cherokee they were everywhere. Once we got to Maggie Valley we say what looked like thousands. Someday Lori and I would like to do the trip on a motorcycle. One of those big quiet ones with the super padded seats and helmets with built in intercoms.

We finally rolled up to the condo around 7:30 pm. Lori and I both were pretty tired so we unloaded everything and Lori and I went to the restaurant on site for supper. Shortly after, it was bed time. The Condo is laid out with two levels. The beds are upstairs. There is a spiral staircase to get to the upstairs. This was extremely hard for Lori to navigate. Her heart was racing by the time she got to the top.

- -

Sunday we went to Lori’s Uncle Ken (Bobo) and Aunt Kitten’s house in Tennessee. Our directions said it would take about two hours . . . so we gave ourselves three. On the way there we stopped “Birthplace of Davey Crockett.” Not much to see, but it was kinda cool. There was a nice park there with a real nice picnic area right next to a river. It also had a camp ground. Maybe someday we will return.

We arrived at Lori’s uncles around 12:15. Her cousin Kenneth, his wife and their youngest daughter were there to say hi. After a quick visit with them they left. We then had lunch with Lori’s aunt & uncle. Lunch was served out on their sunroom. We watched the birds eat while we ate. It is a very relaxing. They have a lovely home. It was a real nice visit.

Lori also got to talk to two of her other cousins on the phone while we were there. One of them, Michelle, was best friends with Lori while she was growing up. Lori said it was like they never skipped a beat in rekindling their friendship. They exchanged email and phone numbers. It really meant a lot to Lori to have that contact made once again.

Lori’s Aunt Kitten really fixed us up with leftovers. She gave us a whole cooler full of food to take back with us. She even gave us the cooler. Tonight we’re going to have pork chops, a slab of baby back ribs (the ribs were already cooked), corn bread, peas, and some fresh strawberries and grapes for dinner. All I had to get were the peas. I know it will be delicious.

Lori got a chance to visit with both her aunt and uncle together and individually. It was really good for her to talk to them. She has always felt very close to both of them and talks about them quite often. They really seem to understand what Lori goes through. This was good for Lori since so many of the people we know just don’t seem to get it. One of the things her aunt said was, Lori and she had a lot of the same things going on, but Lori was much too young to have to go through what she deals with every day. Lori was touched. Her uncle said something that got to me as well. He told me that reading this blog has given him a better understanding of what his mother went through on a daily basis. For those of you that did not know it Lori’s Paternal Grandmother had lupus too. It was a factor in her passing years ago.

It was a good day for all of us. We left around 4:00. Aunt Kitten could see the energy leaving Lori as the afternoon went on. She described it as wilting. It was a great description that I’m sure I will use again. I know she was as tired as Lori was. I hope she didn’t over do it entertaining us. Thanks again Uncle Ken and Aunt Kitten. You really made the visit special for both of us.

The trip back to the condo seemed very short. When we got back to the mountain we found a little park with a whole bunch of ducks and some geese. We parked and sat there for about a half hour watching the ducks chase each other. It was a great ending to a great day. After a nice dinner we called it a night.

- -

Today we went to Blowing Rock. It is such a quaint little town. A lot of the areas have changed here since our last visit but this one seems to have stayed the same. I pushed her around the shops on Main Street and we called it a day. We never made it to the “Rock” so we decided to come back later in the week. Lori was really tired so we headed back to the condo so she could rest.

Lori’s waking up. It’s time to cook dinner. We’ll be staying in tonight.

- - - - - - - - -

It’s Thursday evening. Lori’s sleeping so while I have a chance I’ll recap as much as I can of the week so far.

Tuesday morning we changed rooms. The split level condo was just too much for Lori. We moved into a one room suite. No stairs. It is much nicer for us. The room is on the front of the building so our view is actually much nicer. We decided to not do anything on Tuesday at all. We stayed in the room and finished watching 24 season three on DVD. We did drive off the mountain to get some dinner.

- -

Wednesday was our big day. After an early breakfast at “Fred’s Mercantile” we headed to Grandfather Mountain. We spent about 4 ½ hours there. It was going to be a tough day for Lori based on the stairs we had to climb at the top of the mountain to get to the swinging bridge. It was beautiful and Lori said it was worth the climb.

After the swinging bridge we headed down the mountain to the animal habitats. They have 7 bear, including 1 10 month old cub. We sat and watched them for a long time. It was pretty rough pushing Lori around in her chair up and down the paths but there was no way she could walk it.

We had lunch at the snack bar and sat and watched the birds for about an hour. They had about 9 different feeders with an assortment of seed in each one. It was really cool and attracted a lot of birds (and squirrels of course). After lunch we went back for another visit with the bears and deer. Around 1:00 we were on the road. Next stop, Linville Falls.

Lori slept in the car on the way to the falls. When we got there, there was nothing we could do with the wheel chair. The sign said it was a 4/10 of a mile walk to the falls. Lori said let’s go. After some “discussion” we headed down the trail toward the falls. Going there wasn’t bad. It was mostly downhill. Coming back would be another story.

When we got to the falls I fell flat on my face. Banged up my knee pretty good. I was so worried about Lori I wasn’t watching where I was going. Fell right on to a 1.5 million year old rock face. OUCH! After I brushed off and got the bleeding to stop a bit we were able to enjoy the falls. Absolutely gorgeous. We were not able to get to the spot to view the bottom of the falls due to the long walk involved, but what we saw was worth it. We sat for about a half hour and enjoyed the view. Then we started the hike back up the trail.

The 4/10 of a mile took over 45 minutes to walk back to the car. When Lori finally made it she said her legs were numb. Her heart was beating so fast you could hardly read it. I felt really bad. I know she did the walk for me, so I could go to the falls. She really shouldn’t have done it. I know she is really paying for it today, and she will tomorrow and the next day as well.

We came back to the room and she took a nap before we went to dinner. We just went to the pizza place just up the street. She looked so tired. She perked up a bit after we ate so we went for a drive down the “other” side of the mountain. Almost at the bottom we saw three deer on the side of the road. It was quite a sight. We we’re both very glad we took the drive.

- -

Today, Thursday, we went back to Blowing Rock. More shopping (browsing is more like it). After lunch we headed to the actual Blowing Rock Park. They told us it was a 1200 ft walk with stairs involved. No rock for us! It was not worth it. Lori said I could go alone and she would wait . . . what fun is that! We headed out of town and jumped on the Blue Ridge Parkway.

The Parkway was really nice. We pulled over at a couple of the parks and sat. It was so much fun we decided to check out of the condo a day early and drive to Ashville via the Blue Ridge Parkway.

Tonight we will pack up and get out early tomorrow. It is going to be a really enjoyable ride. I can’t wait.

- - - - - - - - -

Friday Evening Update:

Well, things didn’t go quite as planned. But we’re used to that. Last night Lori never really woke up. She got out of bed for dinner, but went right back to bed afterward. Needless to say we didn’t get packed up last night. I packed up as much as I could without waking up Lori.

About 3:00 am I woke up and saw Lori sitting on the couch. She had just taken some medicine. She said she had a migraine. It was pretty warm in the room, that didn’t help. She drank a bunch of water with her meds and went back to bed. I turned the alarm off so she wouldn’t wake up early. We decided then that whenever we got up and got packed would be good enough.

Lori woke up around 8:00. Her migraine was gone but she still had the foggy head. We went “Fred’s” for breakfast and came back to the room. Lori was too wiped out to do anything so she went back to sleep while I packed the car. Around 11:00 we had checked out and were on the road. Lori was feeling a bit better but her hips were really hurting her.

The trip from Ashville to Banner Elk took just under 2 hours last week. Today the trip back to Ashville from Banner Elk took 6 hours. The trip down the Blue Ridge Parkway was really stunning. We stopped at almost every overlook and / or picnic area. We both really enjoyed it.

We arrived in Ashville right at 5:00 this evening and got a room at the Holiday Inn Express. AIR CONDITIONING, WIRELESS INTERNET, AND AN AVAILABLE CELL FOR OUR CELL PHONE. It was like being back in civilization. We planned on going out for dinner but decided to just stay in instead. Lori took a bath and fell asleep almost right away. Tomorrow we’re going to play it by ear. I have the alarm set, but we may just sleep through it. Again we’re in no real rush to do anything. If we get going early enough we’ll finish the Parkway. I believe it ends near Cherokee. If we don’t get going early we’ll just go the direct route to Tim’s. We’re supposed to be there around 3:00, it’s 2 hours away. I think we can make it.

- - - - - - - - -

Sunday Night Update:

On Saturday we didn’t make it to Tim’s house by three. It was closer to 4:00. We really took our time getting there from Ashville. The Blue Ridge Parkway was really nice. I am so glad we took the trip.

Nancie was still working when we arrived. So I grabbed my drawings from Tim and we decided to head to Nancie’s new office to say goodbye. Once there we started talking and next thing you know it was 8:00 and we were finishing dinner. We said our goodbyes and started home.

Lori was pretty uncomfortable in the car. We wanted to go as far as we could. I talked to Ricky earlier on the phone and he wanted Lori and me to be home to watch the Buccaneer’s Football game with them Sunday at 1:00. That meant we had to get to at least Tifton on Saturday night. We pulled in to Tifton around midnight. Lori stretched out and went right back to sleep (she had been sleeping in the car for quite some time). 7:30 in the morning we were on the road again. We got home today right around 1:00 pm. As great as vacation was it was really good to be home.

- -

The previous week was really rough on Lori. She really over did it. There are so many things we do that you take for granted that Lori is not able to do at this time. She really tried hard so “we” could do things while we were on the road. Hopefully she will be able to do some of those things someday and we can go back. We are already planning our return trip. We’re going to do it on a Honda Goldwing Motorcycle. It’s got to be a purple one though.

We talked on the last leg of our trip about how we are rejuvenated again. It has really been a rough year and a half for both of us. So many Doctors and so many obstacles we have overcome. Hopefully the next year will be better. If not, together we are stronger from everything we have been through and we will get through it together.

- -

Oh yeah, when we got home there was a letter from Social Security. Lori was denied her disability claim. Our first hurdle is already here. Maybe the adjuster should have read this blog.

Going On Vacation

We're headin to the mountains for a week. I hope Lori can handle it. It's been 15 years since we took a vacation like this (more than a couple of days). Really looking forward to it.

Lori wore her Holter Monitor on Tuesday. We turned it in Wednesday. They said "unless we find something you won't get the results till your follow up visit". We haven't heard anything - so I guess they didn't find anything (yay!).

I am going to avoid email, internet, blogs, forums, etc while we are gone, so, unless something happens I will not be posting for a week & a half.

Hope everyone is OK while we are away

Cytogenic Study Results Are In . . .

. . . and everything is "Normal" (yay!)

So, for now we just go with an active Lupus flare, or possible side effects of the Chemotherapy (less likely per Dr. Tumlin) as the cause for the low White Blood Cell count.

Hopefully it will get better on it's own soon.