Not Even Gonna Try to Get Caught Up . . .

. . . Sorry.

There’s no way for me to completely catch up on the past month. To say I have been busy would be an understatement. Part of the problem is the lack of any routine. My work load has been spotty for the last month. This is in some respects a good thing since there has been a lot of other things to keep me going.

Without going into too much detail here is what has been going on.

Regarding the Pain in Lori’s back/leg. /the 1st shot ended up giving Lori some relief. The pain never really went away but it did get much better. 2 weeks after the 1st shot we went for the 2nd shot. You could see by the x-ray the difference from the 1st time. The inflammation was way down. The 2nd shot went without any complications. Since then the pain is almost completely gone. I believe Lori has had some re-occurrence, but nothing even close to the way it was 6 weeks ago. We go for our follow up visit Wednesday with Dr. Brown. Hopefully this can be a chapter we can close, even if it’s only temporary.

Lori’s Mom has been home for a couple of weeks. She ended up being in the hospital and rehab facility for 38 days. Once she was home again there were a lot of things Lori wanted us to do to get her set up at home. It took quite a bit of energy out of Lori to get her mom settled in. There are still thing Lori wanted to do that we haven’t been able to get over there to do.

There are still some issues that we don’t know how they will turn out regarding Lori’s mom. She had a bone marrow biopsy last week. She is suspected of having Multiple Myeloma. Then of course there is the Aneurysm – stable for the moment. Lori is also concerned about her Dad. He has his own issues he deals with as well as taking care of Lori’s mom.

The bottom line is Lori has been suffering for the past 2 weeks from all of the activities of the previous 6 weeks. There have been a couple of “breakdowns” including a pretty severe one last week. It is really hard for her. She wants to do so much, but her body won’t even let her do even the simple things most of the time. She struggles with this most if the time but is really tormented by not being able to do things for her mom and dad.

The past 3 days Lori has been really ill. She has been getting real dizzy when she stands up. Yesterday she was nauseas all day. She is also running a low grade fever. If she doesn’t snap out of it in the next day or so I guess we’d better call Dr. Peditto.

So that’s the condensed version of the last month. Like Lori said the other day, “It’s always something. As soon as the pain in her back goes away something else takes its place”

Relief is Here… Or Maybe Not

…or maybe so?!? Wednesday was terrible as I posted. Thursday there was some relief and a lot of hope. Friday it was the same as Thursday. Today we’re going the other way again, more pain than not.

The good news is there are times when the pain is less severe. It is the 1st time in many, many weeks that there has been any type of a break. The hope is it will continue to get better (or at least not get any worse) for the next week or so. Any relief should allow the nerves/muscles/whatever to become less inflamed and start to heal. In another 10 days we go for the next treatment. If everything is even slightly better going into the next round it should improve significantly after the second shot. That would be GREAT! ! !

Lori’s Mom continues to improve daily. Lori spent about 4 hours with her yesterday (too long, I know). It was good for both of them though. It looks like it will be a couple more weeks before Lori’s mom gets out. Probably on or around the 11th. Sometime next week (I’m guessing towards the end) we will have to figure out what she will need at home to get by. The rehab facility will send someone out to the house to do an inspection and to make recommendations. I guess we take it from there.

No visitors at the house this weekend. Lori’s brother from Tallahassee (Jimmy) could not make it. Not sure why. Didn’t ask Lori – she probably knows. I think he is planning on coming next week but don’t quote me on that. Her brother Reed (from Orlando) just came in for the afternoon and evening. He should be on his way back home by now from what I understood.

Since Reed was here Lori did not go up to see her mom today at all. She called her a couple of times but never went up there. I guess since Reed wont be here tomorrow Lori will head back up for a couple of hours. It really lifts her mom’s spirits when someone is there with her. I’ve got a job I’m trying to get out by Monday morning so it’s another long weekend for me (bout 24 hours between Saturday & Sunday). Maybe one of the boys can go up with Lori tomorrow. Hope she doesn’t stay too long and over-do it. Are you reading this Lori :o) Oh well, you do what you have to. We know you want to be with your Momma as much as you can. Gotta take care of yourself too though!

So, back to the pain. As I said there is some change, and right now that is a good thing. Not a miracle cure by any means, but at least a little change. Perhaps it will be over soon.

Two for Two, Waiting for the Rest!

Expect to be numb for a few hours after the procedure,  CHECK

Then sore for a few days,  CHECK

Well, we’re two for two. Definitely numb, and without a doubt sore. Next the anti-inflammatory is supposed to kick in. 24 to 48 hours according to the discharge notes. Still waiting for that part…

The procedure was completed yesterday afternoon. It seemed to go smoothly, without any complications. Lori’s right side stayed numb a bit longer than they hoped but we simply put her in our wheelchair and headed for the car. The nurse said she would get the feeling back in about a half hour or so. She did.

It was kinda funny when she stood up to go home. As she put weight on her right leg, her hip kicked out to the right. I told her it looked like she was doing the Hokey Pokey or something. She didn’t see the humor. Well, she did, just not as much as I did.

Last night was really rough. She was in tears from the pain. It was terrible. When I came to bed she settled down a bit but the pain was tremendous. Sometime around 1:00 am she got sick to her stomach. Instead of waking me up she went downstairs, took care of herself, and finished sleeping the night on the couch. I guess it was more comfortable for her.

This morning she woke up feeling crappy all over. At times she said the pain was a little better then it had been, other times she said it was worse. Not as unbearable as last night, but still bad. It almost seems like she has the flu or something. No fever though. It could be the events of the past month have just really taken their toll. Perhaps it is some type of reaction to the procedure yesterday or just some kind of Lupus flair with terrible timing. I guess time will tell. Tomorrow morning will be about 42 hours after the shot. Lori should be feeling some relief and any after effects should be gone by then.

I set up the blow up bed downstairs again. The plan is to keep it set up for the next couple of days. She “naps” better if she stretches out on the bed but doesn’t want to (and sometimes can’t) go upstairs to take a nap. So the logical solution is to bring the bed to her.

It’s been over three weeks that Lori’s mom has been in the hospital and rehab facility. It has become a part of our daily routine around here. Quick visits, long visits, and drop what your doing visits. Early visits, late visits, “can you bring me a heating pad” late in the evening visits. Lori’s Dad is holding up OK but all of the visits are taking a toll on him as well. He has been having some issues with his neuropothy. It really hasn’t been easy on any of us, but still not as bad as it’s been for Lori’s mom.

Lori has been doing a lot trying to keep up with her mom’s progress in the past week. There have been some setbacks and minor complications. None of them are major but it still takes a lot to stay on top of things. I find it amazing how much you have to follow up and keep after people to make everything happen that is supposed to happen in a timely manner. In my opinion Lori has done a good job staying on top of things while she is there.

Yesterday was the first day either Lori or I (or both) haven’t been up to see Lori’s Mom since she went to the hospital on the 4th. Didn’t make it up there today either. Lori has called her a couple of times each day though. She really feels bad we haven’t been there. I know her mom understands.

I’m not sure what is going on this weekend. Last I heard we would have out of town guests. Lori’s brother will be here from Orlando and her other brother and sister-in-law will be here from Tallahassee. If Lori does not show some improvement in the next day or so we will not be able to have them stay here at the house. Jimmy said that wouldn’t be a problem and Reed hasn’t even said he was staying here. Not sure what his plans are. Hopefully Lori will be feeling better when she wakes up tomorrow and we can make plans accordingly.

A Couple Of Good Days!

The past few days have been pretty good for Lori. She is dealing with the pain as best as she can. Her Mom seems to be on the road to recovery as well so that helps tremendously.

Speaking of Lori’s Mom, she was moved to a room right near the back entrance to the rehab facility. This is great. Lori is able to drive herself up there in the morning (before it gets too hot) and, using her walker, get to her Mom’s room by herself. She has been up there every day since her Mom was moved. It is really good for her to be able to do that on her own.

The 1st day she went by herself she stayed a bit too long and paid the price later. Since then she has done a much better job of pacing herself. She said a couple of times this week how much she likes having her walker. I’m glad it helps her.

This morning Lori brought Kimberly up to see “Grandma”. Kimberly is the 14th of Lori’s 15 Chatty Cathy dolls. Lori and her mom have had quite a bit of fun with “the girls” over the past year. The girls even made Grandma a get-well card with their picture on it. They all signed it too. I think Lori, her Mom, and Kimberly are having too much fun today. Lori has been up there (at the rehab facility) for almost 3 hours now. She’s going to be really hurting if she stays up there much longer. It’s also getting pretty hot for her to be walking out in the sun.

Perhaps I’ll check in on her after I post this and make sure she is OK.

I believe Wednesday is when we go for Lori’s Epidural. Hopefully it will work. I’ll make sure to post the results.

Did I Say Burden

In my last post, while discussing Lori not doing well I mentioned the “extra burden of out of town relatives staying with us”. I hope nobody was put off by this statement. Those who stayed with us were, and are always, welcomed to stay here whenever they are in town, especially under the “emergency” type circumstances we all experienced.

What I was trying to say is this. Anything that breaks the daily routine for Lori becomes a burden (as defined as “Something that is emotionally difficult to bear.”). Whether it is a Doctor appointment, an unexpected trip to the store, or unexpected house guests, it all has an effect on Lori's strength.

What I forget that a lot of you don’t realize is, things most of us do daily, without even thinking about, (showers, a load of laundry, stopping at the store while out to get a gallon of milk, etc) are things that we have to plan as part of Lori’s day. Any variations to her routine have their consequences. This is just something we deal with daily.

The other part of what some of you may not realize is Lori and I decided many months ago that Lori is willing and happy to do things that she knows will have an adverse effect. For a while we were able to keep her from doing things that affected her, but the time came where everything she does affects her. This is when we decided that she will do what she wants, and can, and we then deal with the effects later (we know they will come)

The out of town guests were one of those decisions. We knew having people stay with us would affect Lori, but we made the decision that the joy from visiting and the comfort of having her family so close would be worth any problems that would come from it.

I promise that, if we did not feel we could have someone stay at our house, I would be the 1st to ask them to get a hotel room. You all should know me well enough to know I am not shy when it comes to something like that.

I hope I have made Lori’s and my feelings a bit clearer with this post. And I hope the family continues to feel that they can stay here anytime they wish.

Not Doing Well

Lori is not doing well at all again. Her mother was in the hospital for almost 2 weeks including 2 days in intensive care. Between the stresses of her Mom not doing well and the extra burden of out of town relatives staying with us Lori is completely drained both mentally and physically. Her mom was moved to a rehabilitation facility on Sunday. Hopefully she will be home soon.

Lori has spent a lot of time sitting up. This is really creating a lot of pain for her with her back/leg. She has overdone it, that’s for sure. It was really hard for her with her mom in the hospital. She wanted to be with her the whole time but just couldn’t. With her mom in Rehab it has relieved some of the stress but I know Lori won’t be happy until her mom comes home.

We had our follow up visit with the Physiatrist (Dr. Brown) last week. The appointment went as expected. Since the SI Joint injection did not work Dr. Brown is going to treat Lori for Chemical Radiculitis(1). The plan is to use two separate Epidural Injections(2) spaced two weeks apart. Our 1st appointment April 25th. The second one is two weeks later. If this process does not work she will have to pinpoint the specific nerve and perform a nerve root block(3).

It has now been 4 months of increasing pain. The pain pills offered some relief at the beginning but do not do much now. Lori has been taking stronger medicine, which again worked for a bit but is loosing its effectiveness. Lori is also concerned with becoming addicted to them.




(1) Chemical Radiculitis - The discs between the vertebra are like gel filled sacs.  When the outer covering of the sac gets a hole in it, the contents can leak out rather than pushing out (as in a herniated disc).  When the gel leaks out over time, it can lead to an inflammatory condition known as a chemical radiculitis.  This is usually best treated using epidural steroid injections or selective nerve root blocks.   If the inflammation isn't reduced, scarring around the nerve roots can develop.

(2) Epidural steroid injections have become a mainstay in the treatment of pinched nerves and herniated discs.   The procedure is done under fluoroscopy (a real time x-ray so the doctor knows where the needle is going) and involves injecting anti-inflammatories around the nerves in the spine.  Since many herniated discs involve some chemical radiculitis, this can help calm down the swelling and prevent scarring around the nerve roots.  Expect to be numb for a few hours after the procedure, then sore for a few days (after the numbing medicine wears off and before the anti-inflammatory kicks in).

(3) A selective nerve root block is what it sounds like.  A needle is placed near the exiting nerve root in question using fluoroscopy (a real-time x-ray that helps the doctor see where the needle is going).   Anti-inflammatory is injected around this nerve in an attempt to calm it down and reduce the symptoms of a herniated disc or radiculitis.  Since the needle is in an exact spot (unlike an epidural steroid injection which is more of a general approach), this technique can help identify which specific level is involved.

Pain Update

Well we had the SI Joint injection (that I spoke of in my last post) last Tuesday. The injection was a combination of two drugs, Kenalog and Lidocaine. Kenalog is a synthetic corticosteroid. The Lidocaine works as an anesthetic to deaden the area where the shot is given. Relief is supposed to take anywhere from immediately, to within one week. It has been over a week now and nothing. No relief of any kind. Not even temporary relief the day of the shot.

Our follow up appointment with Dr Brown is next week, Wednesday I believe. When Dr Brown discussed the SI Joint Injection she said it would either give Lori some relief, thus letting us know how and what to treat, or it wouldn’t do anything and we would be ruling out the sacroiliac joint as the cause of the problems. As of now it looks like we ruled out the sacroiliac! If Dr. Brown still follows what she told us her course of treatment would be, the next step would be to treat for “Chemical Radiculitis”.

I have found a number of causes and treatments for this so I don’t even want to speculate on what Dr. Brown’s approach will be. We’ll find out next week I guess. I’ll let you know then.

In the mean time the pain continues to worsen. No matter what Lori does she cannot get comfortable for more than a few minutes. About the only position the offers some relief is laying on her left side. She is starting to adjust the way she sits, stands, and walks so much I’m afraid she is going to wack her back out or hurt her spine or hip or something. We really need to get something happening here soon.

The POTS is as bad as ever. Lori now has spells after almost every meal in addition to those when she stands up. If she eats a big meal it looks like she is going to pass out right in the middle of her plate. At Mike’s birthday dinner (we had steak) my Mom couldn’t believe how fast Lori’s heart rate got just from eating. It scared her a bit. It is something that is really hard to describe until you see it happening. POTS is a really strange condition that’s for sure.

Lori's latest labs looked pretty good, some of the best results Lori has had in quite a while. We’ll have Dr Peditto do another complete set in w couple of weeks and I’ll post the results. If results keep moving in a positive direction Lori’s WBC should be well within the normal range very soon. Lori’s proteinuria has dropped greatly too.

So I guess along with the good news of Lori’s labs leveling out we can take the bad news or the back/leg pain not getting any better.

I’ll post more when I have more to post

What the Heck is a Physiatrist ?!?

Our visit with Dr. Peditto went as expected. She was disappointed that the physical therapy did not help. She also had the next course of action ready to go. Our next stop was going to be a Physiatrist. Dr. P informed us that she would call her directly and talk to her about Lori’s condition in general and her treatment so far on the leg pain. She also said she would do what she can to get us in as quick as possible.

That was yesterday. Today we had our appointment. I can’t say enough how good the people are at Dr Peditto’s office. Not only did Dr. P get the appointment but in less than 24 hours they had the referral ready to go as well. Any of you who have had to get an appointment with a specialist and get the insurance issues completed knows how very awesome this is.

So, what the heck is a physiatrist you ask?

A Physiatrist is part of a branch of medicine specifically dedicated to the diagnosis and treatment of physical disability. Physiatrists are doctors who are certified as specialists in rehabilitation medicine by the American Board of Physical Medicine and Rehabilitation. The area of medicine they practice is called "physiatry."

Physical Medicine and Rehabilitation (PM&R) was born in 1946 in response to the challenge to help disabled citizens reach their maximum potential. What is so special about these specialists? After completing medical school and obtaining an MD or DO degree, they study four more years and take two extra examinations, one written and one oral. The purpose of this extra training is to make sure that physiatrists are focused on the patient as a whole person. Most physicians deal with illness and possible threats to life. The physiatrist deals with functional loss and threats to living fully -- the physical and psychological disabilities remaining after initial medical or surgical treatment.

The physiatrist often coordinates a team of other doctors and health professionals in developing and carrying out a comprehensive rehabilitation plan which extends beyond hospital walls into the patient's family, community, occupation, friends, and ultimate life style. This rehabilitation team may include physical, occupational, and/or speech therapies, nurses and doctors from various specialties, including neurology and orthopedics, psychologists, counselors or social workers, rehabilitation engineers and others.

The physiatrist's success comes through a team effort where the patient is an integral part of the team process. Each improvement in function, however subtle, can significantly improve the life of a patient.

Now you know what a physiatrist is (

Our Doctor’s name is Dr. Lee Ann Brown D.O. She is a board certified and fellowship trained Physiatrist specializing in disorders of the spine. She completed her residency in Physical Medicine & Rehabilitation at Northwestern University and is a graduate of West Virginia School of Osteopathic Medicine. She completed her fellowship in Interventional Physical Medicine & Rehabilitation here at Florida Spine Institute. Dr. Brown is a member of Physiatric Association of Spine, Sports & Occupational Rehab, American Academy of Physical Medicine & Rehabilitation and the American Osteopathic Association.

After her exam she said Lori’s case was difficult to diagnose properly due to Lori’s overlapping conditions and symptoms. She felt it was either one of two things. One was Chemical Radiculitis . The other possibility was inflammation of the SI Joint (otherwise known as the sacroiliac joint). Yes this is the one Bugs Bunny always complains about.

The 1st thing we are going to do is a sacroiliac joint injection. A sacroiliac joint injection serves several purposes. First, by placing numbing medicine into the joint, the amount of immediate pain relief experienced will help confirm or deny the joint as a source of pain. Additionally, the temporary relief of the numbing medicine may better allow a chiropractor or physical therapist to treat that joint. Also, time release cortisone (steroid) will help to reduce any inflammation that may exist within the joint

This is done using x-ray guidance to ensure the precise location is being medicated.

The procedure is not yet scheduled. It should be next week. Dr Brown needs authorization from Dr. Peditto to stop Lori’s Plavix for the 5 days prior to the injection.

In the mean time Dr. Brown prescribed a new medication for Lori. It is called Lyrica. Dr. Brown said it was a drug used to specifically block the pain receptors in the nerves. Lori is to take it 2x’s a day as well as her pain pills.

Hopefully some relief is on the way. If nothing else we have a new direction to go in.

A Month Has Passed

Sorry to all of you who look here for updates. To those who sent emails and or cards THANKS!

I’m not going to even try to catch up with everything that has been going on. I will do the best I can to re-cap the past few weeks though.

The POTS is an ongoing problem that Lori is learning to deal with. We bought her a walker to use when she can. I’ll post some pics in the next day or two. We are trying to find out what helps and what makes Lori’s condition worse. So far we know that after eating Lori feels POTSY. We haven’t been able to tie it to any particular food, just eating in general. We do know that if she eats a big meal she gets VERY POTSY. Learning to live with this is something we are working on all the time. Some days are better than others.

I guess the biggest issue Lori has been dealing with at the moment is the constant pain in her butt. It is, and has been, non stop for at least the past 5 weeks. Her leg gets numb off and on. Lori can’t sit at all for more than 5 minutes without changing positions. Even standing hurts. About the only time Lori gets relief is lying down.

As I wrote last, Lori had an MRI and an X-Ray of her lower back. No problems were found. We went to see a physical therapist on Feb 21. He evaluated Lori and set up a treatment plan. Due to Lori’s POTS and other conditions she was limited as to what she could do. All of Lori’s exercises were done in a lying position. The therapist showed Lori how to do her 1st set of exercises and stretches and made an appointment for later that week.

We went 2 times a week since then. After the 1st time they added a couple more exercises to Lori’s routine. The whole process takes about 20 minutes to run through.

At our last visit we discussed Lori’s progress (or lack of) with the therapist. She said she would discuss it with the guy who did the initial evaluation and let us know something on Thursday. She also said she thought we should make an appointment with our Doctor for our follow up because the therapy wasn’t working.

Today we worked with the 2nd of 3 therapists we had. She was the best in my opinion. She too told us the therapy wasn’t doing anything and we had no reason to come back. One of her concerns was if the pain was from an orthopedic problem, the therapy would have worked. The pain could possible be radiating from another area she said. She advised Lori to continue with the stretching exercises but should hold off on the rest until we see the Doctor again.

After our session with her we once again met with the original therapist who did Lori’s initial evaluation. He reviewed everything and told us he would send a copy of his findings to the Doctor. That was it. We were done. It was very upsetting for Lori to have worked so hard and get nowhere. Tonight was not a good night.

We go see Dr Peditto on Tuesday. I have no idea what will be next. A neurologist maybe? I don’t know. What I do know is Lori tried with everything she had to get this headed in the right direction. She did her exercises everyday as ordered. Now we’re 6 weeks into it and still in the same boat we were in back then (sounds familiar to me). A friend of mine today told me “You guy’s deserve a break sometime don’t you think?!”  Well you would think so. I guess this isn’t one of those times though.

We do have a fun weekend planned…Income Tax Time!!! Talk about a real pain in the butt (image placeholder)

MRI Results

Impression: Minimal degenerative changes are present.

Dr. P’s notes: No Disc Problems. Mild Arthritic Changes.

Lori will be glad to hear that when she wakes up. Dr. Peditto’s office is setting up an appointment with the Physical Therapy department in their building for evaluation and treatment. I hope they can get us in soon.

Headache Is Gone!

Lori’s headache is finally gone. She was actually smiling earlier this evening. She slept most of the day. When she woke up she felt much better.

No word yet from Dr. Peditto on the MRI results. We called her office just before lunch. The receptionist said they received the results and they were sitting on Dr. P’s desk waiting her review. She said Dr. P would do her best to review them and get back to us but they were really swamped.

They have always been very good at Dr. P’s office about getting us any results. I’m sure we will hear something tomorrow. If Dr. P has found something she is probably already working on an appointment with a specialist.

In the mean time we are anxiously awaiting the results.

Pain in the Head - Pain in the A$$

A Mini hooray this morning. Lori's migraine has turned into a regular headache. She is talking and just had a cup of coffee. Not sure why it came on so quick and so bad. Perhaps the MRI the night before had something to do with it. Anyway, I hope it is truly on it's way out. It was a bad one this time.

Lori's pain in the butt is still there, but has changed a bit. She still has the shooting pain when she moves as well as the off and on numbness in her leg. What is new is the constant localized pain in the right buttock itself.. The pain is not quite sharp but definitely not dull, In addition to the pain, the same area is very swollen and hot to the touch. We're going to try a heating pad this morning and see if that helps.

Lori's Valentines day present (not really but...) came yesterday. I'll post more about that tomorrow.

Migraine Update No.2

11:00 pm and still going. Not as bad as earlier but still there. The nausea stopped this afternoon around 1:00. Since then she has had some soup and a few crackers and has kept them down.

Maybe tomorrow it will be gone.

Migraine Update

On a scale of 1 to 10 with 10 being the worst I would have to give this one a 10 ½

Waiting For Test Results

Short post today. Not much to say.

Yesterday Lori could hardly move again. She was very uncomfortable all day.

We had an evening appointment for her MRI. That seemed to go well. The Radiologist will read the test and get the results to Dr. Peditto by tomorrow. At that time Dr. Peditto will review both the x-ray and the MRI and let us know what is going on.

Today is a migraine day. When I woke up Lori was on her way to the bathroom to get sick. I saw on the counter she had already taken her Migraine medicine. I’m not sure when it came on but it looks like a good one.

She is resting with an ice pack on her head. I hope it breaks soon and doesn’t get any worse.

Super Bowl Sunday - Not So Super

"I feel yucky" Those were Lori's first words this morning when she woke up. You could see it in her eyes she just felt like cr@p. I haven't seem her like this since she was 'recovering' from our vacation at Christmas time. Very listless. No energy and on top of that no strength.

The oxycodone seems to be helping with the pain. It is making Lori sick to her stomach but not so bad it can't be controlled with Pepto-Bismol. We moved the Air Bed downstairs so Lori can stretch out and watch TV (by watch TV I mean sleep). She does appear to be able to get more comfortable than she has for the past week or so. That's good.

I'm not sure if it's the upset stomach or just generally not feeling well but Lori isn't eating very well. Today she hardly ate anything. She is also going through hot and cold spells. She will be freezing for about ten minutes, then a bit later, she will be burning up.

Bottom line is Lori is a real mess again. Don't know why. Mike made an observation earlier that "She [Lori] usually gets like this after you go to one of these out of town Doctors". When I told him that in the past it was because of the Chemo his response was "She used to get like this before she started doing Chemo". Perhaps he is on to something. The long drive and the long day will wear her out. Mike also mentioned the fact that Lori worries about going to see any of these Doctors. I know she was nervous about Dr Richards. He just might be on to something.

Tomorrow we should get the results of the x-ray. I'll post the news as soon as I can.

Saturday Update

Quote from last night: She is in bed now. I thought she was sleeping but I just heard her walking around up there. I should go and make sure she is OK. She needs to sleep well and have a restful night.

Well, she was awake. I decided to go to bed. We talked a bit. I know I keep saying it but she really is in a lot of pain. Unfortunately she didn’t get the “restful night” I was hoping for. She in fact, woke up 6 times between midnight and 7:00 a.m. Obviously she didn’t sleep well. She then awoke a couple more times before finally getting out of bed around 9:00.

The new pain medicine (oxycodone) does seem to help. That’s a good thing. At least she has some temporary relief until we can find out what exactly is happening and how to treat it. Tomorrow she is going to take her 1st dose around 7:00 a.m. and then go back to sleep. Hopefully, when she wakes up (usually between 8:00 & 9:00) she will feel OK. Today it was after 9:00 when she took it. It took a while to take effect.

Fingers crossed for a better nights sleep tonight and a better day tomorrow.

The Back and Leg Pain Continues

Thursday was another day filled with discomfort and pain. Unfortunately Dr. Peditto was not in her office so we did not get in to see her. We did make an appointment for 11:00 Friday. As the day went on Lori complained that her lag was getting numb in addition to the pain.

She took a nap in the afternoon that lasted a couple of hours. Her plan was to cook dinner but was unable. We did go in the hot tub later in the evening. It seemed to give Lori some relief although it really messed with Lori’s POTS.

Today we went to see Dr. Peditto. She was concerned and a bit surprised by Dr. Richards’ prescription for Physical Therapy since he did not first order an x-ray of the lower spine. On a side note she was also amazed when we told her Lori was denied for Social Security Disability again. “Unbelievable” was about all she could say.

Dr. Peditto ordered the x-ray, along with an MRI to see just what is going on with Lori’s lower back. She also gave Lori a prescription for a stronger pain medicine to give her some temporary relief.

We left the Doctors’ office and went right away to get the x-ray. We will have to get the MRI next week. Dr. P will need to get authorization from the insurance company first. We should get the results of the x-ray on Monday and find out when Lori’s MRI will be.

On the way home we stopped and filled Lori’s new prescription. It was almost 3:00 by the time we got home and finished lunch. Lori was really wiped out. She fell asleep right away.

After dinner we went in the hot tub again. It didn’t seem to help as much today as it did yesterday and Lori got too hot while she was in it. You just can’t win sometimes.

She is in bed now. I thought she was sleeping but I just heard her walking around up there. I should go and make sure she is OK. She needs to sleep well and have a restful night.

More tomorrow...

Our Trip To Gainesville = Disappointment

Our drive up to Gainesville was nice but filled with anxiety. We had no idea what to expect with the new Rheumatologist (Dr. Richards). We were very happy after our last visit (to see Dr. Segal) and excited about the possibilities of the two Doctors working together. Unfortunately the visit did not go well.

Dr Richards actually runs the Lupus Clinic. He was very condescending to us and treated Lori more like she was there to help them with their research rather than treating Lori for her illness. He ignored me completely (this was not a big issue as many of the Doctors we have seen ignore me on the 1st visit). He also hardly spoke to Lori. He directed the majority of his comments to Dr. Segal and the Resident that was there. Even that we could deal with. Many Doctors don’t have a good bedside manner. Also, if his job is focused on teaching, he would address his colleagues more than the patient. These issues alone would not stop us from continuing to see him. There were, however, other  problems that came up.

When the nurse took Lori’s vitals, her blood pressure was 144 / 102. Very high (for most people that is). As you know high blood pressure is unacceptable with any type of Kidney disease. As I have previously written Lori’s BP goes from super high to almost non-existent due to her POTS. On our last visit Dr. Segal appeared to know all about POTS and did not seem too concerned. In fact some of our fears were alleviated when he told us the POTS would get better as the Kidneys improve. We’re not so sure he knew what he was talking about now.

When the Doctors came in the examining room (they both came in at the same time) the first thing they said was “we have to get your blood pressure down” they reviewed Lori’s BP medicine and wanted to put her back on one of the meds the Cardiologist took Lori off of a while back. When I pointed out that “Lori’s BP was high because she was sitting and if they wanted a lower reading all they have to do is have her stand up and take it again” they completely dismissed my ability to understand Lori’s condition. Dr Segal just looked at me and then turned back to Dr Richards (who had his back to me). No comment was made to Lori or I. They started talking to each other about changing her meds and which one to add back to Lori’s daily dose of meds. Again and I reiterated my point. “If you want another reading it is as simply as changing positions. You will get three different readings if you have her lie down, sit up, and stand, with the standing reading being the lowest”. Dr. Segal, appearing not to believe me, said something to the effect of “Let’s see it”. I told them Lori would have to stand for about 2 minutes and then they will get a nice low reading.

Lori stood up and the resident got up to take her BP. About a minute later she took Lori’s BP. As expected (from both Lori and myself) Lori’s BP dropped drastically. The reading was 103 / 52. Both Doctors looked at each other with a strange look on their faces (I couldn’t see Dr Richards’ face but Lori said he looked quite surprised). They stopped talking about lowering Lori’s BP and immediately switched to “What is the Cardiologist doing about this”? We again told them that her treatment is to remove Lori from both BP medicines and keep her on a high salt diet.

At this point it looked to us as though they did not know what to do. Dr. Richards changed the subject with a “ What else do we have to address” type of comment directed to Dr. Segal. Dr. Segal asked Lori what else was going on. Lori told them about the “Pain in the ass” she has been having (the way she put it was quite funny though no-one but me laughed)

Their diagnosis was either Sciatica or Piriformis Syndrome, which is a cause of Sciatica…I think. CLICK HERE FOR LINK  They said Lori’s best option is to go to Rehab for treatment and pain relief. Dr. Richards wrote a prescription for rehab. When Lori asked if there was anything they can do to help alleviate some of the pain now they said “No”. I specifically asked about a cortisone shot (which has offered temporary relief in the past) Dr. Richards replied to Lori with ”You have pain pills at home correct? Just use those”. When Lori pointed out that the pills make her nauseous neither Doctor made any suggestions. When I add Lori’s reluctance to use Vicodin on a daily basis (so she doesn’t become addicted) again there was no response other than “Rehab is the best method”. So, no relief anytime soon I guess.

On his prescription Dr. Richards also put “General Conditioning” as part of the rehab. Dr. Segal suggested Lori start walking and try to get to 2 miles a day before our next visit. Dr. Richards suggested a Stationary Bike and / or Treadmill.  HUH!?! 2 Miles?!? Treadmill?!? Stationary Bike?!? Lori can’t make a sandwich without almost passing out from her low BP.

At that point, both Lori and I knew it was a lost cause. Without speaking we could tell by looking at each other we were on the same page. We both stopped asking questions and just wanted to get the appointment over with. There was one last thing Lori and I both took issue with. As we ended the appointment Dr. Richards asked Dr. Segal “When are we going to have “This Patient” come back. “This Patient”!?! He had her chart right in front of him with Lori’s name all over it. I could see her name from where I was sitting, yet he refers to her as “This Patient”. Unbelievable.

On the ride home we discussed it quite a bit. Right now the plan is to get an appointment with Dr. Peditto to discuss the Sciatica and treatment for it. We also have an appointment with Dr. Kuo (Cardiologist) to discuss and “rehab”. We will follow Dr. Kuo and Dr. Peditto’s advice on both.

As far as going back for our next appointment (3 months from now) it all depends on what we find when we receive our copy of the Doctor’s notes. The Clinic manager said it would take about 10 days for the labs to come back and she will fax us all results and notes at that time. If the notes are good and there appears to be a good understanding of Lori’s conditions and a treatment plan listed then we will probably give them another try. If not we will again be looking for a new set of Doctors.

In the mean time Lori still can’t get comfortable. She took a pain pill. It helps a little. Next stop Dr. Peditto.

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.