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Lynn's Journal: "The Beginnings of My Life with RA"

Mswsdawg@aol.com 

Hi ! My name is Lynn Vealey and I have decided to go ahead and tell my story. As you will notice by the title it will be in Journal form, so it
will be written in installments as things happen whether good or bad. I
haven't been to my first Rheumatologist visit as of yet. It is next week, DEC 13th, 2001, so some back ground is due I believe, to give you a better picture of who and what I am. (Of which, at times my children say they haven't figured out yet, of course that is in fun I hope!)

I am a 44 year old Alabama woman. I live in Mobile, AL. I married at 19,
had 4 children (three girls and one boy), then I went to RN Nursing school. I absolutely love my children and my job. At this time I am three years divorced from their Father and their ages are 24, 23, 18 and 13. The oldest two are married and the oldest has my only grandson so far that is 2 1/2. (He, of course is a living doll!!) I have been an RN going into my 11th year and I have always worked in the intensive care environment. I started with a general intensive care and now am working in a CCU which recovers open heart surgery patients, heart attack patients and any and everything else having to do with the heart that is of a critical nature. As I said, I love it, and indeed I do!! I work 12 hours a day, three days a week and for the better part of each of those hours I am on my feet and that is no exaggeration in
the least. Now, enough with the small talk and on with the beginning of my road toward Rheumatoid Arthritis.

I started having some generalized foot pain about 2 1/2 years ago that
started mainly in my right foot. This pain wasn't getting any better so I
went to my GP and told him about it. He said "Well, Lynn, you need to get a new pair of shoes." That was it!!! No x-ray, no digging further to
determine what kind of pain I might be having, nothing!!! I was shocked to say the least! My response, and I've never been one to hold back was, "You mean to tell me that I paid a $20 CO-pay just to have you tell me to get a new pair of shoes? Don't you think I have thought of that?" Anyway, I dumped him and made an appointment with another physician that I knew had a couple of years extra in the orthopedic realm of learning. (One of my mottos is that YOU hire them and so YOU can FIRE them.)

The next GP was a good and kind man that took my pain seriously. He took x-rays, and asked me to describe my pain, the works!!! He even took blood work and everything!!! He put me on Celebrex and said he really didn't know what was causing my pain but thought that it might be some metatarsalgia and we could try the Celebrex to see if it would help. I, being the studious sort that I am looked that up and found it to be -- pain in the metatarsals, foot bones. Well, the Celebrex did help for a short time, but then the pain would return. So, he gave me some Ultram and I took that, but only when I wasn't working. The end of my typical day of work was to come home and absolutely crash and not get up again until the morning. I would work 7A - 7P and that would put me at home around 8PM, so the pain was past tolerable and I was almost dead from it, at least my foot was. About 6 - 8 months went
by and I was still hurting, but now the pain was beginning to change. It had moved into my other foot, so not only was I having pain in my right foot, but my left as well. The pain was so much more pronounced that I was very obviously limping by this time. (Already qualifying as a gimp but didn't know it <--that statement is purely in fun, okay?) Also, I was unable to put very much weight on my left foot at all. (This puzzled me greatly for the pain began in my RIGHT foot, not my left!) The x-ray that my physician took looked to him that there may be a stress fracture, so he put me in a walking brace for 6 weeks and I was out on sick leave for that entire time. At this time I had to go on pain meds to tolerate it, and that med was Lortab 7.5 mg 2 every four hours.

After the six weeks of the brace I started back to work, I was elated! I was free! I had no more cumbersome brace! I was healed!! I thought, "Surely this will be over now!!!!" NOPE WRONG!!! Almost immediately my pain was back, yet it was worse ... much worse ... a burning pain, a throbbing pain, a stiffness in the mornings, every morning without fail. Now, I had pain after work, but never in the mornings had I experienced stiffness and pain before even standing up! It actually hurt to even get out of bed and put any weight on either of my feet!! What is going on here? What is wrong with my beautiful feet? They don't look diseased!! What shall I do?? Where shall I go? So, I went back to my very kind GP (you know the one that did more than say, 'Get a new pair of shoes', you know, the kind one!) At this time my physician said very kindly "Lynn, I hate to say it but either this is the most severe case of metatarsalgia I have ever encountered or I just do not know what is wrong with your feet. I recommend you see a podiatrist." My respect for him then grew 10 fold. In my reckoning whenever someone can say
that they do not know something, then they can be trusted not to be so arrogant to continue to treat when they don't know, and just don't have the guts to admit it, know what I mean?

So, I went to the Podiatrist and on my first exam he said he would have me jogging or dancing even by the end of January (this was November of 2000, a full year since I had first gone to the smart and caring GP). Now, this Podiatrist was a real cut up, he joked around, made me laugh, and I really enjoyed going to him, however, after dealing with this foot pain for over a year as I had done, I didn't jump at the pie-in-the-sky promise that he made about me jogging and dancing by the end of January. I just didn't want to get my hopes up falsely and I told him so. I said, "Yeah, right! I can't walk now without pain in my feet, yet you, the wonder doctor are going to have me dancing and jogging soon!" I hadn't intended to become so skeptical, but I guess that was part of the process, who knows? He proceeded with the usual x-rays and then he pulled out this strange looking x-ray plate that he said I was to walk across as nearly normal as I possibly could. Now, here he's asking me to do yet something else that I haven't been able to do normally for over a year -- walk, and to add more difficulty to his request, I was to do it barefooted! All this time of foot pain did not prepare me for the pain I was about to experience. I took my first step as normally as possible onto that x-ray plate and proceeded to collapse to the floor with excruciating pain and burst into tears! I could not help crying, and I will never forget the pain I felt that caused it. To make matters worse, I still had to walk barefooted across that plate with my other foot. Because of the pain I was scared to death! But me, being the brave and wonderful person that I am proceeded to walk across that plate with the other foot. Again, I
collapsed to the floor, but this time the Dr. himself scooped me up and
carried me back to the examining room and told me that no one in this world should ever have to endure pain like that. That he would make sure that not only would I be jogging and dancing by the end of January but that I was going to be pain free in the process. A high promise indeed I thought. So, he explained to me the complicated way that the xray plates that I had just walked across revealed how I was walking, how I was putting the weight of my whole body on my feet and that my feet were not able to do this. The pain that I had was due to a malformation of the bones in my feet. He gave me a name for this, and for the life of me I cannot locate what it was but it was some sort of syndrome. The "cure" for this malformation that I had was going
to be some inserts into my tennis shoes that I would have to wear for the rest of my life. This would enable me to go to work and walk around all day, as long as I could, as long as I wanted without foot pain. Also, if I chose to I could go dancing after my feet had become accustomed to these inserts and I could wear some other shoes without the inserts for a few hours at a time if I chose. Sound good? It did to me!!! But here is the catch ... the inserts cost me $350.00 with my insurance paying $60.00. A second pair would cost me only $60.00, and the insurance would pick up the $350.00. Also, while I waited for the inserts to be made, I came in for electro therapy every other day for about three weeks on business days only and between those days the Podiatrist taped my foot up just like I had seen done on Monday
Night Football all my life. (I am a Football Fan also, by the way.) So, I
did it. Of course I did. What was $350.00 in comparison to my foot pain? I could do that! I was going to be able to keep working because he promised me no pain during my wait for the inserts to come in. Also he insisted writing me a physicians order preventing me from being scheduled for three 12 hour shifts in a row any more, and that indeed helped me. And the electro therapy? Well, I never saw any real difference with that, but the taping he did was worth big bucks to me!!!! I could always walk better after he taped up my feet!! No kidding!! No wonder those big football guys can go out limping and come back in not limping at all after a good A # 1 tape job!!!!! I could too!!!!! For the next three weeks I got a tape job three times a week! I was happy, elated, I felt I indeed had found the cure or the proper
treatment for my constant limp and my unrelenting foot pain!!! Wonderful wonderful!!!! Hurrah, hurrah!! Merry Christmas and Happy New Year!!

But then, right at the end of December, I got the inserts, my three week wait was over, the taping stopped and I was ready to go for the inserts full speed ahead. I was surprised that these $350.00 items were so thin and flexible. How were they going to help me any? Oh well, he made some jokes about right foot insert to right shoe and left foot insert to left shoe and sent me on my way. No additional appointment made or necessary. Although he did say to check back in 3 - 6 months and tell him how wonderful he was. ?????? This I couldn't figure, but went along my merry way. I used the inserts faithfully, very faithfully and indeed by the end of January I did manage to walk briskly around my block in my neighborhood. Maybe, just maybe I could have danced a little bit, but I wasn't about to risk that, not even a little.

So, my insurance plan changed in the year from 2000 to 2001 and now I would have to have a referral from my GP officially for any other specialist besides OBGYN, Opthamologist or Dentist. So, next when I had to see my wonderful kind smart GP, it was for a bad cold I couldn't shake and found it to be a slight case of bronchitis and I brought him up to date on the podiatrist visit the latter part of the year before. He looked and acted quite a bit skeptical when I told him that the podiatrist had said I had a malformation of the bones in my feet ... but he did not elaborate he only said something like "I highly doubt that your bones are malformed ... but if your pain is relieved then that is great." Well, my foot pain wasn't totally relieved but so much better than before that I was happy with it. I was able to tolerate it anyway for only two days in a row of working.

I have migraines and for the next several months seemed like the migraines wanted to absolutely take over my life. So between feet being tolerable at work and migraines my summer of 2001 wasn't really going so great. Also, I was getting really fatigued quickly. I was putting things off to do that I never had done before. Things like deep cleaning my room, not feeling up to it to finish the dishes after supper, you know things like that. Because of this unusual tiredness and fatigue that seemed to plague me constantly I began to get depressed. I didn't want to do anything! Just the bare minimum to get by. It became a vicious cycle ... feet hurt, tired all the time, no motivation to do anything, depression ... feet hurt, tired all the time, no motivation to do anything, depression ... kept going on and on. I kept thinking that maybe I am going through the change of life or something, especially when I started having night sweats! I'm telling you, I was indeed a basket case. I so wanted something to be wrong with me so that I could treat it that I got my GP to draw labs twice during the summer to check for the FSH level to be up so I could say YES!! I am in Menopause and THAT IS WHY I AM GOING NUTS NOW!!!!!! But, nope, no elevated FSH for me dearie, that was well within normal limits and nothing else was out of whack either!!! So, the depression just got worse and the fatigue got worse, and the night sweats kept on going ... and then the Nurse Practitioner suggested I take Celexa and see if it might help. She said that since my FSH was normal that we must be dealing with anxiety and not a hormonal imbalance. So, I said I would try it. Well, I still was fatigued all of the time, I still had no motivation, my feet still hurt, but no more night sweats and the depression seemed to me to be a little better. So, I stayed on the Celexa. Now, in October of 2001 one weekend that I worked a Saturday and Sunday I noticed that on the following Tuesday that my outer right foot was red and swollen and quite painful to move or touch. I had a follow up appointment with the Nurse Practitioner for my migraines and to follow the effectiveness of the Celexa on that Tuesday so I brought up the foot thing. Told her this wasn't something I had experienced ever and just thought I would bring it to her attention. So, she xrayed it. Lo and behold the xray showed a dark spot on my fifth metatarsal. She said it was time to see an orthopedist because both she and my GP did not know what to make of it. So the next week I went to an Orthopedist. He looked at my feet, assessed them both thoroughly. Noticed that I had limited movement to all of my toes of both feet and I informed him that had been like that for about a year or so. Anyway, he looked at the xray I had brought with me and gave me three choices. 1) I could wait three weeks and see if there are any changes 2) get an MRI or 3) get a bone scan. Well, I figured there was probably nothing to it so I chose #1 to wait for three weeks to see if it changes.

My next appointment three weeks later my right foot was xrayed and showed the same dark spot, only now there was a crater in my metatarsal head, a change. So the next day I went for an MRI of the right foot. I asked the Ortho to go ahead an MRI both, but he said, "You don't have any symptoms like this one does on that one."
The impression of the MRI was:...2cm in length and in AP diameter aggressive appearing lesion, right 5th metatarsal head with bone destruction and associated soft tissue density mass. This could reflect tumor or infection.... Now I was really getting spooked!!! The MRI was done on a Friday and I worked that Saturday and Sunday so I was able to pull up the results and read them myself before the orthopedic doctor was able to read it. I was very very nervous and felt like every second the tumor was getting bigger and bigger. On Monday morning the DR was in surgery so I still had to wait until 2 PM when I called and spoke with him. He said he had the results in his hands and were reading them now. Then the next thing he sad was ........ come in now for a needle biopsy and I said I would be there in 20 minutes. So they did the needle biopsy and boy did it hurt!!! They sent it off for Culture and Sensitivity to see what bacteria may grow to see if this tumor was due to infection and sent some to pathology for a Pathologist to look at it one cell at a time to see if indeed it was or was not malignant. the results of the C and S were negative ....... yea!!! No infection!!! As an RN I know how hard and difficult a bone infection can be, so this was good news. But now I was worried about the pathological slides and what they would turn up. I was thinking in my mind that if indeed it was malignant then I would just let them cut my foot off and be done with it. Oh, I thought all kinds of things!! Anyway, on the next Monday, the RN who works for the Ortho doc called and said that the path slides showed no malignancy. Hurrah!!!!!!!!!! No malignancy!!!!!!!!! No Cancer!!!!!!!!! I was ecstatic!!!! But then the doc's RN said they still did not have a clue as to what it is either. So, what did I want to do? Just wait and see if it gets better? NO OF COURSE NOT!!!!! IT HAD ALREADY EATEN SOME OF MY BONE AND I CERTAINLY WASN'T GOING TO GIVE IT HALF A CHANCE TO EAT ANYMORE BONE FOR DESSERT!!!!!!! So, I talked with the Doc that afternoon and he said he would remove it on Thursday in surgery.

I went for the surgery and woke up in the recovery room as usual. There were two of my lovely daughters there and they said ....... "Mom, got some bad news." I said, "Okay, spill it." They said "The Dr. couldn't get it all out. He only took a biopsy and the joint that used to be there. They sent part for Culture and Sensitivity and another part to Pathology. Seems what ever it is had so overtaken your 5th metatarsal that there was no way he could have reconstructed your foot." How disappointing indeed!!! I was so distraught and bewildered. "What in the world could this be? Something that eats my bone, destroys my joint and takes over a bone?" Now I am very puzzled.

The next Monday I got a call from the Ortho doc's RN and he said the C & S was negative ...... and the Pathology report should be ready by tomorrow afternoon. Great! No infection!!! But then, that leaves the pathology ...... oh my, what could it be???? Now me and everyone I know are on pins and needles with me on the question of what could it be????? A horrible place to be of not knowing.

The next afternoon the Dr. called me Himself and I knew for him to call could not be good ... He said "Lynn, I am going to refer you to an oncologist. Now don't be scared, I am sending you to him because I have no earthly idea of what this might be. The pathology report only stated that there are multiple plasma cells in the bone. That is not supposed to be there at all. I have researched what plasma cells in the bone might indicate and I only came up with two possibilities, 1)Plasma Cytoma or, 2) Multiple Myeloma. I have already discussed this with an oncologist and he agreed that you need to be worked up by an oncologist in order to determine what kind of cancer this is -- if indeed it is. Plus, since it is aggressive, we do need to know what to do about it. Is there an oncologist that you prefer? Now, Lynn, surely you do not think you are dead, do you?" With this I respond with, "No, I guess not, although I am utterly confused now and I am afraid." I chose an oncologist and thanked him for calling me. I would still be seeing him Thursday at 1100 AM so I would be prepared with any and all questions I might have. And, my Mother would be going with me to make the odds a little more in our favor.

When the time came to see the ortho doc on Thursday, Mom and I had a bunch of questions ... like: all of this waiting while appointments are made and all, that tumor or whatever it is is growing still, destroying bone, joints, and who knows what else. Can we go ahead and get a bone scan to have already done when I see the Oncologist, can we go ahead and draw all kinds of lab work, or perhaps call the oncologist to find out what sort of labs he may need in order to have some results in front of him when I go in to see him, whatever it is that we can do ahead of time let's do so that time can be on our side in case this is cancer and if indeed it is, then we all know that time is one thing that is NOT on our side, so let us get the better of it from the get go. Well, the ortho doc was agreeable to a lot like the bone scan, but not the blood work for he had no idea of what he might order. My Mother lit into him like a lion and did not relent and he was very kind in allaying her fears although I knew she would not give up in her questioning of him. Finally while in the office I held my hands up and called a halt to the questioning and the talking back and forth between the doc and my Mother. (Mother and I had agreed that if at any time that I wanted her to stop that she would when I gave the word, and she was as usual, true to her agreement, she is a wonderful woman and the best Mother any one could ever hope for.) So, my cast was taken off, and my stitches were removed and Mom and I were on our way ... my appointment with the Oncologist was to be the following Monday before Thanksgiving November 19, 2001. We had the weekend to pray, to ponder, to fear what lie ahead. It was one of the most stressful times of my life.

On Monday my Mother came over as well as my daughter Randi who is also an RN. They both were going to take me to the Oncologist. Now, I know that my Mother is a tiger, and as well so is my daughter, so secretly I almost was in fear for the doctor's life!! Ha! Wonderful to have such loving people on my side!!! My 17 year old daughter was also here, although she had to go to work, she did want to call in and come, but I talked her out of it. After all, with me being out of work, she had become a vital bread winner in our household, and a good one she is, for I never had to ask her to be such. She took that responsibility on all by herself. She and I clash a lot with her being 17 and all, also being a senior in High School, but we both always know that true love is at the base and will always be what we have for each other whether clashing or not. The closer it got to be time to go to the Oncologist, the more nervous I became. I have found through this experience that a sure sign of my getting nervous or anxious about anything comes out in the form or irritability. Now isn't that a wonderful way for me to treat these wonderful women surrounding me? By being short, smart alecky and irritable? I could not help it, and they realized before I did even that it was a result of my anxiety and fear of the appointment drawing near. Just before we were to leave, Randi and I realized that indeed she could not come with me. She had my grandson, her son Jay with her who is just over two years old. We had not thought until just that moment that in the waiting room of the oncologist there may be immunosuppressed patients and being around a small child like Jay could frighten them. We know he isn't sick, but they don't, and so it was decided that she would go home and put him down for a nap and await us to call when we got back to tell her how it went. So, off Mom and I went.

The Oncologist was very very kind, I knew him from before. He was my
Father's doctor and I had worked with him in the hospital in a professional environment. He talked very honestly with me. Told me that he never had seen a case where any kind of cancer had ever shown itself in a foot before, but had not ruled that out at all. He also explained to me why the Ortho doc thought the results of the pathology slides pointed to Plasma Cytoma or Multiple Myeloma and explained the two very nicely. He said that his mission was going to be to first of all see if I had cancer, if it was malignant ... and if I did not have cancer he was going to find out what in the world this was. He was going to view my pathology slides himself first thing on Tuesday
morning and in the meantime he was going to draw every blood test known to man to be "cooking" while he viewed the slides. There was a possibility that the slides would not be conclusive and if that were the case, then he would want the Ortho Doc to go back in and get some more for biopsy, although he hoped that the ortho doc had gotten enough already. He instructed me to call him in his office the day before Thanksgiving between 8 AM and 10 AM, at which time he hopes to have an answer for me, or at least an educated guess. He was so authoritative and firm I was so comforted by that. I started to cry and he came over and put his arm around me and said "Lynn, you need not
worry now. I am going to find out what is going on here, and when I do I will tell you and then we can find out what it is that we need to do to get you back to where you want to be, okay? Now, I bet you are in some terrific pain, aren't you? According to what you have told me that you are taking for pain control, the Lortab ... you are getting way too much acetaminophen (Tylenol). We don't want to kill your liver while keeping your pain under control. So take this script and take it religiously every 12 hours no ifs, ands, or buts about it. You call me anytime if it doesn't take care of your pain ... and you can take one Lortab for break through pain occasionally, but if you find you need more Lortab, let me know for I will increase this other med ." It was Oxycontin, and I followed his advice to the letter.

The next morning I got the script filled and took one 20 mg Oxycontin. After about 45 minutes I was completely amazed, I had no pain at all ..... but what was really strange to me was that I had no pain at all in my left foot ... none! It wasn't until that moment that I realized how much pain I had gotten used to having on a regular constant basis. Now, I was waiting for the next morning to arrive so that I could call the doc and find out what he had discovered. The waiting game is such a hard and difficult chore.

Next morning at approximately 8:08 AM as I was reaching for the phone to call the doc, it rang! It was him!!!! He was calling me!!!! I thought, but for only a second that this could not be good since he has called me ... but ... he said ... "Hi Lynn, Michael Meshad here. You don't have cancer! You have a very bad active case of Rheumatoid Arthritis and you need to see a Rheumatologist quick! I will recommend this group, you choose and let me know and I will call them personally and send your records right over, okay?" I said, " Oh, I love you Dr. Meshad! I am so happy not to be your patient anymore, but you do know that I love you, right?" He responded with a laugh and said, "Yeah, I know, ha ha! Now keep taking the medicine I gave you ... your pain will probably not get any better until you start on some anti rheumatic drugs, okay? Have a great Thanksgiving!" Me, "You too!!! And thank you so much for calling me so soon!! Bye, bye!"

That was it! No cancer! Yeah!!! I was ecstatic!! But Rheumatoid
Arthritis? I am a nurse and I know NOTHING about that one!! So off to the computer I go to look it up. I go to Google.com and methodically go through each reference given ... this keeps me on the computer for about 24/7 for several days. Then ... Thank God I get to the reference to Arthritisinsight.com and go there. A Godsend! Truly my prayers are answered here, for I really begin to learn about this RA and what I am up against. So, while I wait for DEC 13th to get here at which time my Rheumatologist visit is set, I am learning, learning, learning. (As well at the time, every day I get up a little bit stiffer, a little bit slower, and I am hurting a lot more ... and now I know why!)

So, I do every little thing that I find out to prepare myself for the first
trip to the Rheumatologist. Like keeping a pain journal, keeping track of
every little pill I have ever taken ever since my foot pain began over 2 1/2 years ago. I find that all of the symptoms I have been experiencing over the past couple of years have fit with RA in everyway. I can now move forward and pray more specifically and with more knowledge of what is going on inside my body. I am looking so forward to the Rheum visit I can hardly wait ... I have so many questions. I cannot wait to get on the meds that will help me to feel better and get back on track with working and everything ... I cannot wait!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


December 13th 2001 Rheumatologist appointment at 8:00 AM

Finally it is here, the day I go to see her! The Rheumatologist, the doctor that is going to help me feel better and help me to get back to work!! I am so excited I could hardly sleep last night!! My Mother is coming with me to be sure and help me take notes and be sure and ask any questions we have written down. After all, we have done our homework to become knowledgeable about this disease called Rheumatoid Arthritis. So, we both know that "Knowledge is Power ... Support is Essential." Mom is coming along as a support to me and I love her for it, she is my best friend and also is an RN, so no dummy to the medical field either, and as well she is feisty and I know no one will take advantage of me while she is here! How excited and anxious
I have been for this day to arrive. To go in and get on some heavy duty drugs to halt the destructiveness of RA. To go in and ask my 30 something questions we wrote down last night. The answer day for me!!!

WRONG ! ! ! ! ! ! ! DEAD WRONG ! ! ! ! ! ! !

The visit this morning was equivalent to the worst horror story you can
imagine. I was completely heart broken. First, when I got there I found out that the oncologist had not sent my records ahead of me at all, neither my orthopedic surgeon. So, when Dr. Oglesby came in she explained that she could not make a diagnosis on what I had been told, and I understand that. She needs to see lab results, pathology results, the works. So, she said they would get them while I was here this morning, gave me a gown to put on and left the room. At this point I began to cry deep and hard, I couldn't help it. When she came back she went ahead and examined me. She asked me a bunch of history questions and felt most of my joints never commenting on her
findings in the least. (Even when some of her touching of my joints hurt and caused me to cry harder.) You see, I was quietly crying throughout the whole thing, I just could not help it, it was taking all I had to not let it all out and sob uncontrollably. I was waiting for her to ask about my pain, the pain I have had and in what joints, how severe, how was I sleeping, you know the usual type questions that any doctor would ask when doing a physical examination. She never asked. So, I figured that she must be going in a methodical way that works for her so I waited for her to get around to asking me more specific questions about how I feel and have felt. (I was doing my best to give her the benefit of the doubt.) Then she said she needed to x-ray my feet, both of them, and this made sense to me. (While I was getting back into my clothes, Mom said she didn't see where she was going to be of any help and I agreed, also she was angry and I could tell, so she went on and left for a trip she had planned and that was fine with me.) After getting dressed I went to the back with the Dr.'s RN to get my feet x-rayed.
After that was done, I got my stuff and thought I would be taken into another exam room to talk with the Dr. again, but nope ... that was not where I went. The RN took me up front and said that I should check out and come back in 4- 6 weeks! I was stunned to say the least!!!!

I said ..."What?"

And she again said come back in 4 - 6 weeks and explained that the Dr. had to look over my lab results and operative reports and all and should ... but not definitely ... have a diagnosis ready when I come back in 4 - 6 weeks!!!

I could not believe this!!!! Seriously!!!! I was absolutely stunned and almost flabbergasted to the point of speechlessness, but me speechless? Never!!!

I said ... "What about the pain I have with this? Isn't that ever going to
be addressed?"

RN ... "What do you mean? What were you taking?" She then looked down at my chart and said "Oh, Oxycontin 20 mg twice a day with Lortab 7.5 mg for break through pain. I guess I should tell you that these doctors here do not ever give narcotics. Never, ever, zip, zero, zilch!"

I said ..."Well, if it is going to be 4 - 6 weeks before I come back I am
still going to be in the pain that I have been having. I have some pain meds left, but not enough to last for 6 weeks, at least not for break through pain. So, would you go and ask Dr. Oglesby if I can get enough of that to last until I come back and if I can take Benadryl to help me sleep at night?" So she went to ask while I wrote out the CO - pay check for $15.

When she came back she said, "We cannot help you out with anything for pain, but yes you can take Benedryl for sleep."

I said ... "What? So what am I supposed to do during the 6 weeks between appointments?"

RN ..."You don't understand, we have to determine what is causing your pain which is probably inflammation and until we know what is causing it, we cannot treat it."

I said ..." So, in the meantime, who cares if I am hurting, right? You
people haven't even given me any anti-inflammatory meds or said to take Tylenol"

RN ... "No, you don't understand, we don't treat until we know ..."

I said ..."No, you don't understand ... you people don't address pain ... she never even asked me about how I feel."

RN ..."You don't understand, ..."

I said ..."Oh yes I do understand! I understand that you don't care about how I feel, how this hurts, you don't want to address my pain ...."

RN ..."Wait, and I'll go get her ..."

I said ..."Oh no, you don't understand. There's no need ... I don't have to take this ... I don't need you nor that quack of a doctor you've got back there..."
With that, I left. I cried all the way home.

A horrible horrible visit indeed!! What a cold, uncaring woman she is .... I have met brick walls with more compassion than she showed ........... When I got home, I sobbed on my 17 year old daughter Rachel's shoulder for about 15 minutes or so. She is terrific, she knows when I only need a shoulder and she just let me lean on her and just cry until I had it all cried out. This is where the phrase "Support Is Essential" comes in so well. I needed that support from Rachel with her willing shoulder for my heart sobs and her unquestioning open arms until I had all of my heartbreak cried out. Then she could ask questions and I could answer them.

After that cry I was ready and it was time for some action. After all, I
still have RA, and I was still going to need a Rheumatologist and remember earlier what I said? YOU HIRE the Doctor, so YOU can FIRE he or she also!!! This is where "Knowledge Is Power" comes into the picture. From researching Rheumatoid Arthritis and knowing what this disease entails and the medicines necessary, the FACT of pain that is experienced, the truth that every patient has a RIGHT to have their pain addressed as well as treated, the facts of how this disease progresses and can destroy joints, bones and tissues, all of this knowledge worked to my advantage to take the bull by the horns and take seriously my need for seeing that I get the compassionate care that I need to move forth and get back to functioning as best as I can in order to pursue MY RIGHT to happiness just like every other member of the human race. Now, I will step off of my soap box and continue on with this day of my first Rheumatologist visit. You mean there is more? Yes, there is, but just a bit more.

I called all of my physicians and told them NOT to send any more of my
records to Oglesby. I told them that I would be seeing another
Rheumatologist and would get back to them when I knew who and when. I also took that opportunity to tell them that I would be requesting my full medical record to be copied and how many copies I may need, which could be as many as three. Funny, how understanding they all were in comparison to the lion's den I had visited that morning. They even said for me just to let them know how many copies I needed. So, there still are kind people in the medical field after all!! Wow!! Then I called my insurance representative and asked about a certain Rheumatologist that I had heard of through a very dear friend
and wanted to know if he was covered under my plan. While I was on hold I prayed that he would be covered and that I hadn't gone out on too bad of a limb. When they came back to the phone, I was very happy and elated to be told that he indeed was on the list as an approved Rheumatologist for my insurance ... Thank God!!! So, I called and got the soonest appointment available. It was February 20th, 2002 at 1100 AM. Long time away, but I already knew I had an inside friend in that office to maybe help me there, and also the best help I have ever had has been prayer, so that to me wasn't going to be such a big obstacle.

THEN THE UNBELIEVABLE HAPPENED!! The Rheumatologist that I had fired that same morning called me on the phone!! I was stunned! Certainly this was out of her character. I wondered if perhaps she remembered that I was a CCU RN that was in contact with a lot of people including her peers and wouldn't hesitate to say just exactly what a wet washcloth she turned out to be!! Or perhaps she remembered how I had told her that a prominent Oncologist in my
area had recommended the group she was in, oh whatever, it surely could not be that she indeed after all, cared about me. No way! And no way was right. She proceeded to treat me in the same manner that she treated me in her office, she never asked me how I was feeling, although I pointed that out to her that she hadn't. I told her at the beginning of the call that I was really glad that she had called because I would feel much better telling her what I was doing and not just her nurse and the office staff that happened to overhear. So, I told her that I would not be using her as my Rheumatologist, that I would not be back to see her and that I had already made arrangements to see someone else. She then tried to rationalize everything she did not
do. But mostly she kept saying over and over that she needed lab results, xrays, operative reports, all of those things to treat me. I told her I knew and agreed with that, as I had in her office. Also that I knew that in order to make a definitive diagnosis she needed every one of those things plus an accurate history, and a good physical assessment, to which she agreed heartily. Then I asked her if she agreed also that she needed the patient's subjective description of pain and suffering, plus limitations that any symptoms may or may not have been present that brought them to the physician in the first place? "Oh yes, of course I agree 100% with that very thing!", she said. So, I followed with, "Well, then when do you think you were going to get around to that? In the next 4 - 6 weeks maybe? Because you never
once asked me how I felt, and you never once wanted to know anything about my pain even when you brought me to tears during your assessment! I have found you to be the coldest person I have ever come across in my life as well as my career as a nurse and I have met a lot of rude uncaring people. Actually I am surprised that you even have a practice to speak of, but thank you for your call. You never recommended an over the counter anti-inflammatory or even a simple aspirin. I do not need you now. I will not be coming back for you are not my Rheumatologist. Good-bye." I hung up.

So, what next you may ask? I asked the same thing ..... and so I slept the rest of the afternoon, a deep sleep that I desperately needed from this exhausting day.

Next installment is what happened the next day and in the interim of my wait for a Rheumatologist visit. Thanks for your interest. And remember ........

You hire them, you can fire them ... and ... most importantly ...
Knowledge is power ... support is essential.

February 19, 2002

Well, folks, here I am again to give an update on my life with RA. After
that disastrous meeting with the horrible Rheumatologist I did sleep all
afternoon, and boy did I need it!!! The next morning I woke up bright and
early and made an appointment with my regular GP for 1:00 PM that afternoon. My plan was simple, all I wanted was someone to take care of me until my next Rheumatologist visit which was set for February 20, 2002. That seemed like light years away, but at the time I figured I could get it moved up someway, somehow.

-----(It is rather funny how I come out of a gruesome day like the day before with that lady Rheum, and the next morning I can be so optimistic and positive with all kinds of grand ideas and hopes. Well, I am a Bible
believing woman and I pray a lot, so I know that God is much bigger than that bad Rheumy and He will take care of me ... so ... I choose to be positive rather than negative, to smile rather than frown, to be cheerful rather than blue.) ----

So, at 1:00 PM I am at my GP's office and we are having a nice long chat. I explain everything to him that has happened to me since he sent me off to the orthopedic doctor because of the bone change in my right foot. I tell him absolutely everything. He says he has gotten nothing in the way of communication back from any of my referrals, so I tell him that I will be keeping a copy of my own medical records and when I get a copy from them that I will bring him a copy as well. See? I am being a very nice patient here, I believe that you take an active part in your medical care however you can whether it is in making extra copies of your records, or whatever. Anything less and you will not be "in the know" concerning your medical treatment, and how can we have the power that comes with knowledge if we don't have the knowledge in the first place? Anyway, I spent about 2 hours with my GP. going over all that I have learned about RA in the recent past and asked if he would put me on Celebrex, for thus far that is the only anti-inflammatory that hasn't caused me any nasty side effects like ibuprofen and Vioxx has.
He agrees to most everything I ask. I am very upfront with him and tell him that I need him to care for all of my medical needs until I get in to see the next Rheumatologist I have an appointment with and proceed to tell him what happened with the one the day before. As well, I fill him in on the pain medication that I am currently on, that the oncologist prescribed for me and made it available for him to change it if he felt he wanted to. He declined to change anything, but did say that he would like to refer me to a pain management specialist and that he would like for me to see an ophthalmologist to get my eyes checked again for a baseline since, he said, RA affects the eyes. I agreed with that, but inside I was thinking --a pain management specialist? Now why in the world would I need that? Turns out that he isn't so comfortable prescribing me Oxycontin for pain management, so I'll go and see the pain specialist.

I started the Celebrex. 200 mg twice a day and lo and behold I started
getting some really bad and intolerable indigestion! Called the GP and he
prescribed me some Zantac to take with it and told me to take it as often as I could. If I could only manage to get it in once a day, then at least that was better than none. That is just about the way it is too. I take it only when I have eaten a huge meal and then I wait to see if it is going to make my stomach act up. If it does I skip the next dose. As it all works out I generally get to take it about every other day. But, at least it did bring the swelling in my hands and feet and face down -- and that was really what I was after with it. Also, my hands felt better in the mornings when I get up since I've been taking the Celebrex. Not so much burning and numbness.

Oh, I did take him copies of my records as I promised to do. I also started my own collection of my medical records. This will keep me in the know, so that I can have power because of Knowledge. Remember? Knowledge is Power!!!!!

I am still playing the waiting game for my rheumatology visit to roll around in February, and have good days and bad days, mostly bad I am sorry to say. At the same time, I know that I am getting very frustrated and saddened, or a better word to use would be depressed over all of this. I am beginning to cry a whole lot more often that I am used to. I am so sad over not being able to go to work, the financial issues are getting to me and I feel like there is no light at the end of this tunnel. The GP's office called me about my appointment with the Pain Specialist and guess when it will be? March 6th!!!!!!!!!! That's even AFTER my Rheumatologist visit!!! I could not believe it!! So, I call the girls that do the referring and tell them to call another Pain Specialist in town that is covered by my insurance, and see if I can get in sooner. They call me back a couple of days later, and I have an appointment for February 6th ...... still a long way off, but before the other one. I keep both appointments in case one or the other calls and moves me up.

So, basically I am just hanging in there as best I can waiting waiting
waiting for the rheumatologist visit. Meeting new and heartwarming friends form Arthritisinsight.com to help me through the wait, give me advice and basically just hold my hand in a sense. But I am getting more and more depressed anyway. I can't seem to help it. I think being in limbo like I am is the worst thing anyone can do to someone. But wait is all I can do.

So, January 9th, the day arrives that I will soon run out of my Oxycontin
prescription, and I knew it would come as well as my GP. But, when I call
him for a refill or what ever, I can't seem to get him on the phone. He
calls me personally the next day while I am in the shower. I am thinking,
"Hey, if the doc has called me personally then there should be some good news about maybe my rheumatology visit getting moved up!" So I hurriedly call him back and leave a message that I will wait by the phone for him to again call me. I do, I wait all afternoon for him to call again. Then, he does, and buddy it ain't nothing like I figured it to be. He actually had the nerve to call me and tell me that he didn't like it that I was on the Oxycontin, he acted toward me as though I didn't need that kind of pain relief! I was very angry and getting angrier by the minute. He had the nerve to say that "Oxycontin is not the drug of choice for a SIMPLE joint pain." JOINT PAIN YOU SAY? JOINT PAIN????? SIMPLE JOINT PAIN? (This call came in early January after the Christmas Holidays and all, I am in the middle of playing the waiting game, remember?") So I ask him ....................... "Is this Dr. Becker? Dr. Eric Becker? The same Dr. that I spent over 2 hours talking with in December about RA and my situation with waiting for the Rheumatologist visit? ------- he said, "Yes it is."
"Well, what happened to you? Did you just go brain dead over the Holidays? or what?" -------- he said, "What?"
"I spoke to you in depth about everything, my pain meds included and even asked you if you would like to change them to something else. You had said no. You agreed that we would stay on this same medicine until I see the Rheumatologist and then let him take over the pain meds."
He said, "Well, I think this is just too strong."
I said, "Oh, really? Well, let me ask you something then. How many stores
did you get to go to this past Christmas to buy Christmas presents for your family? Did you get to go shopping and have a good time? Because I
couldn't! I hurt much too bad for that, although one day I did get to go
into Winn Dixie to get some gravy mix all by myself and I was sooooooo proud of being able to do that you wouldn't believe it! What is it that you think I am doing over here, having parties? Oh yeah, I'll bet you think I am having big drug parties, like maybe I am just handing them out to all of my friends and we are staying stoned over here, well just so that you know, I don't get to do anything at all!!!! If you don't like the pain meds then give me some of those DMARDS to slow down the process of RA then."
He said, "I don't know enough about those to prescribe those, and you know that."
I said, " So then get yourself acquainted with a rheumatologist and get
yourself educated on it. By the way, did you call about trying to get my
rheumatology visit to Dr. McGee moved up?"
He said, rather cocky like, "Yes I did, I talked to him yesterday."
I said, "Yesterday? You said last month on December 14th that you would call him at the beginning of the next week and you have just now talked to him? Well, if my appointment gets moved up any don't take any credit for it, because my orthopedic doctor, Dr. Engerson called him while I was in his office last Thursday. If indeed my appointment gets moved up it will be due to his call and not yours. I trusted you to call just as you said you would and now you tell me you just did it yesterday? I cannot believe this."
He said, "Well, send your daughter over to pick up the prescription, I will
have it ready for her. Good-bye Ms. Vealey."
I said, "Okay, good-bye" and hung up. Then I proceeded to cry my eyes out again. Now, the doctor that I thought respected me and would continue to help me has decided that my pain is not real, or even if it is it is only simple joint pain.

I was very lucky that my friend Lbmpress (L. Myers) was online and I could talk to her about it. She was my support ... you know "Support is
Essential." She made me feel better, she let me vent it all out and listened and even managed to make me laugh. Thanks Laura!!!

I have to be honest, however, I have been caught up in the depression, the reality setting in on this disease of RA I am sorry to say. I don't know
whether I was just thinking I was Super-Woman or what, but I can only guess that in my mind I thought it was going to be like a virus or some type of infection that was going to miraculously go away after a month or so. Do you understand where I am on this? I have been having to face reality. Realities that I do not like in the least. It is strange and I know that I am becoming more and more depressed about it and at the same time I know that depression to be a normal process when facing something like this. I would not hold depression against anyone else in my position and therefore I do not tend to blame myself for being weak for being depressed. (So, at least that is nice, I can be depressed without literally beating myself up for it.)

I am still dutifully waiting for my Rheumatologist visit that arrives on the
20th of February, so at least, with every passing day I know it is closer and closer. As it turns out my GP (remember the one who called and got on to me for taking the medicine that he agreed that I should continue on?) he referred me to a Pain Specialist and I went to see him on Feb 4th. I am so happy that I did! Finally a doctor that not only understands what I am going through, but even understands RA!!!! I couldn't believe it!! After my wonderful experience with the woman Rhuemy that completely embarrasses womanhood and physicians in general with her lack of compassion and bedside manner ... I was helpless concerning the skeptical wall I had erected to guard my heart from such disappointment again. So, in short, yes I had an attitude with the Pain Specialist. His name is Dr. Couch, and goes by Patrick. I was scheduled for an appointment with him for March 6th so the GP gal in the referral department went ahead and scheduled me with another Pain Specialist on Feb. 6th, so the strategy was that if either called to move up my appointment up I would go, and either way, if I didn't like the first one I saw I could check out the second one. (Boy did that woman Rheumy do a number on me! I hire them, so I can FIRE them, right? Right!!) Sounds like a good idea to me. Dr. Couch's personnel called me the week before and moved my appointment up to Monday the 4th of Feb. So, here I am going to two Pain Specialists in one week!!! Finally, once again I feel like I have the upper hand in my medical treatment. I am no dummy, and I know that having some control over my medical treatment, will help my depression. The waiting game had begun to really get to me! I felt as if I was in limbo and only getting worse and worse and then having to fight my own GP for pain relief. I even had to BEG, I repeat BEG the GP for an order to do the water therapy!! As an employee of the hospital here, it was only going to cost me $22.00/mth --- and my Mother was willing to pay that for me because I wouldn't take on another bill when I wasn't bringing in any income anymore. So
......................off to the Pain Specialist I go!!!!!! ..................

I am on time, I am sharp, I am ready to tackle another physician who tries to intimidate me, who tries to accuse me of perhaps "drug seeking" or whatever!!!! I am on the defensive BIG TIME!! I am helpless to do anything about it also, it is a defense mechanism that I developed when that Rheumy did me dirty! As it turns out, the Pain Specialist, Dr Couch, was absolutely wonderful!!! He is 36 years old, and he listened to me! He was shocked that I had not been in any type of physical therapy or water therapy or massage or anything to help me during this long waiting period. I talked straight forward to him as I do almost everyone, but I know that he had to be able to tell that I was on the defensive. There really couldn't be any way that he couldn't, ya know? I even said to him "Hey, I don't think I know quite how to communicate with you here." His reply was, "You are doing just fine, please continue."
Me, "No, I mean I can tell you that I hurt, I can tell you on a pain scale
what my pain is like and all, but I have no proof ... the Celebrex has gotten rid of the swelling in my hands and feet, and there is nothing that shows you my pain. Just my words, and I don't know if you believe me or not." He said "So, do you plan on going back to work?" Then, I lost it ... I cried and said "Oh yes, I love, I absolutely love nursing! It is something I do not consider to be a drudgery of a job, it is something they LET me do and they actually PAY me to do it! Oh yes, I plan to go back to work, the sooner the better!" Then he asked me to do just a few simple little tasks like touch my toes ... I asked "Why?" He said "Well, I need to assess your level of function somehow." So, I did it ... well, actually I didn't do it ... and this was heartbreaking for me ... I couldn't do it ... I began to cry because it hurt ... yes, but I wasn't crying because of the pain only, I was crying because of the stark reality of what I could NOT do! Then he asked me to raise my arms over my head from the side and touch my fingertips together ... sounds simple enough to do, right? WRONG!!! I could not do it because of the pain, excruciating in my shoulders ... and this reality shook me up big time. I now am truly crying because up until now, I really and truly, and honestly did not know what I could not do because of this damn RA !!!!!!!!!!!!! So, I am faced
with some reality here, and it is a hard pill to swallow and I think of Mary
Poppins because 'Just a spoonful of sugar and all!' I tell him "Hey, I exercise to Mary Poppins every morning of my life gently, smoothly ... I do keep moving, I am not just lying around dormant waiting for my joints and muscles to become permanently contracted." He was very kind to me and also very honest ... hard to do at times, be honest AND kind at the same time. He said "Ms. Vealey, it is going to take a multidisciplinary approach to see about getting you back to where we can see if you can go back to work."
...............................................................................
...................................
What?..........See
IF?..........IF..........IF..........IF..............IF.......IF.......???????

????
I suppose if I were him I may have reached over to help me pick my jaw up off of the floor because I know beyond a doubt that my face was the perfect picture of shock and dismay. He then said that he could not say with certainty that I would be able to go back to work, but at the same time he could not sat that I could not. So he reminded me that he wants to help me get back function that I am losing due to this disease as well as due to my long waiting and no one giving me any direction to move in while I am waiting. Then he told me what he is going to do. He is going to set me up with Water Therapy, Physical Therapy, Massage, and Psychological therapy for my depression. Then he said something that really comforted me and made me trust him completely with directing my care ..... he said.... "When you get on either Methotrexate or gold, or any other Antirheumatic drugs, we will know better how and when you can get back to doing what you love." It is at this point that I almost kissed him!! Finally someone that knows something about the DMARDS, something about treating RA!!!! Something about what I will need from my Rheumatologist!!! What a relief!!!! So, in essence I left that place a very happy woman, one with hope. I faced a lot in there with that doctor, a lot of things I cannot do at this point, but I also left with hope now, something no one has given me here personally as far as in the medical community to say that I will not be in limbo forever and that there are possibilities open to me in getting back to work, however they may be bleak and far-fetched ... at least I can now look at them with new eyes. (Needless to say I canceled the second Pain Specialist appointment for this week.) I like Dr. Couch and the direction he is pointing me in.

That same week I signed up for the Water Therapy, although it isn't strictly run by a therapist. I signed up for the opportunity to get in a pool, heated of course and just move around more without the weight of gravity as a hindrance. Also, I went to see the physical therapist that week as well. She is a lovely person and works out of Dr. Couch's office twice a week on Tuesday and Thursdays, the days I will be going. Now, I no longer feel as though I am completely in limbo, I am doing something to help myself!!!!! I feel much better all the way around!!!

The very next week however, I went into what I can only guess to be a flare. The pain in getting up in the morning and all throughout the day was almost unbearable! I could not move hardly!!! This lasted for 5 days straight..... that is why I figure it must've been a flare, although I don't know quite enough about RA yet to know what it was. I was absolutely miserable and had no relief at all. I could do nothing about it. The pain meds I was on did nothing to help it. I called Dr. Couch and he gave me some Tylox for breakthrough pain and told me to do nothing ....... to just take it easy and lie around until the pain is over with. So, I did as he said and on the 6th day, it was over..... my pain was bearable once more. Don't get me wrong, it is never gone completely, but that 5 day stretch of unbearable pain was nothing I had ever experienced up until now.

Now, my weekly constitution is to go to physical therapy twice a week
specifically for lower back and knee pain. I am waiting to be scheduled for a psychologist appointment to help me deal with the depression due to the pain, and I go to the pool, or try to about three times a week. All of this while planning to marry the man of my dreams in March. Ha ha!!! Life does not come to a standstill for me now during this limbo period ... and lo and behold my Rheumatologist visit is TOMORROW .... THE 20TH OF FEBRUARY!!! IT IS FINALLY HERE! YEA!!!!!!!

Well, folks, here I am now the day before my Rheumatologist visit. Yes,
tomorrow I go for my second try at a Rheumatologist!!!! I have had some
wonderful reports on this doctor from many many people. I am praying that all of their reports are truer than true. I am trying not to get my hopes up too much, but that is difficult for me. I will go tomorrow at 1145, I take my own copies of my medical records, so I no longer leave to chance whether the other docs ever send their things over or not. After that first Rheum visit, I will never be caught without my own medical records again. This I have promised myself. Well, I need to get all of my questions together again, and go over the ones I had before to see if they are still questions for I have learned quite a bit since December 13th, 2001 when I saw that nasty Rheum that didn't give a darn about me or her patients.

I'll be back with an update after tomorrow on my visit to the
Rheumatologist!!!!!!!!! See ya then! Wish me luck!!!

March 7, 2002

Hello again from Mobile, Alabama. This is Lynn Vealey back to run my mouth via these typed words and put into written form my so looked forward to visit to the 2nd Rheumatologist on February 20th. Now, remember that I made this appointment on December 13th, the day I had a horrible appointment with someone that I would not take a strange dog to ... let alone myself!!!! And here is it, day and time to go to see Dr. Tom McGee at 11:45 AM!!!! I found out that up until last Wednesday I had gotten so used to seeing this visit down the road, or off in the distance that my fiance and my Mother both reminded me of it because I had forgotten. Can you believe that? That really shocked me and showed me that even in the midst of a horrific flare of pain that got me down last week for 6 days straight didn't put my mind closer to the Rheum visit that was less than 1 week away, I was just thinking and planning how to marry the most wonderful man in the world. So ..........finally it truly is here and I am going.

First of all I would like to say that Dr. McGee was a very kind and compassionate man from the get - go. A doc that looked me right in the eyes and talked to me about me specifically and with a concern that surprised me deeply. His obvious intelligence was magnified by his soothing, sincere bedside manner. This is so damn important to me I cannot express it. We look at all of my records that I have with me. I have everything I could get.... I thought. I had gone to the oncologist's office and they made me 2 copies of my medical records. One for me and one for Dr. McGee. But everything they gave me as far as how that oncologist labeled me with Rheumatoid Arthritis was my labwork. Now, he had told me that labwork PLUS a review of the pathology slide is what made him arrive at the diagnosis. But, I didn't have his dictated summary of the path slides. Oh well ... guess I can't do everything right all of the time! Anyway, Dr. McGee said that he would get that from the oncologist. But here comes the real shocker................................. HE SAID THAT I DO NOT HAVE RHEUMATOID ARTHRITIS !!!! He said that it just doesn't add up. He explained to me that my symptomology was in line with it except that I don't have any pain in my hands. I do have numbness and tingling in the mornings, but no stiffness or pain like a lot of other places. Also, for the past month or so my main source of pain has been in my back ... and RA does not affect the back!!!! Then he looked at my labwork and still the only evidence that would point to RA was the RF factor which was 342. However, I know already through my study of RA that lab in that area can be elevated in other instances, not just RA. I explained to him how the oncologist had told me I had RA and how specific he was and that he said my path slides were definitively RA. So, what in the hell is that in my right foot? The ortho guy left half of it because he though it was cancer and didn't want to disturb it too much for fear of metastases. The Rheum is totally puzzled by the tumor, and he said he was also puzzled that my oncologist would tell me so specifically that it was RA like that. He went further to explain that if indeed the tumor was a destructive factor with RA that I would have some of that same type of tumor in my left foot as well, especially considering the size of the one on the right with it having completely destroying my joint at as well as the head of the 5th metatarsal. He made perfect sense, and this scared me. So, here I am in limbo again ........

I say "Well what is it then?" And he responds with a strong possibility of a severe disabling Fibromyalgia, but he is not sure. He says that all of my pain could be resulting from the tumor in the right foot, but this is a hard pill for me to swallow, for now I walk normally on it. But I will hold in abeyance everything he says for he tells me upfront that he is thinking aloud and studying my symptomology aloud and welcomes any and everything I may add. (Oh yes, I love him deeply now and am considering awarding him my firstborn although she is 24 years old and he already knows her as an RN in another hospital.) He then sends me to get my feet x-rayed and I ask him why not x-ray my back and all as well (-----inside I am wondering if it ain't RA, then what the hell is that in my foot, and with this excruciating back pain as of late, do I have tumors now in my back? Or black spots on my bones in my spine or hips? Like was on my right foot back in October?-----) Being the wonderful man that I proclaimed him to be at the beginning of this update he said "Of course we can do that, and we will examine the x-rays together, you and I." (Inside I vowed to follow him anywhere.) So, off I went to have labwork drawn, he drew CBC, HBLAB27, RF, Chem 19. Then to x-ray. I went back to my room with the x-rays in my hands for us to evaluate. And he did look at them with me. No black spots seen anywhere ....... and the original one on my right foot was very obvious, nothing obscure about it. I was very much relieved and so happy that he accommodated my request. He then told me and my wonderful Mother who has Fibromyalgia in her back in one spot only that he would really like to get a second opinion and make certain that he isn't missing anything at all. He says again that he is leaning toward Fibromyalgia, but will not give a definitive diagnosis yet. Then he explains to my Mother and I that he would like to send me to the Mayo Clinic in Jacksonville Florida for the second opinion. I asked him was he wanting to send me there for their renowned team approach or for a specific doctor. He said he wanted me to see a specific Rheumatologist first of all, and then that Rheumatologist would direct the rest of the team to evaluate me and make certain that nothing was missed. Mother and I agreed. Before I left he gave me enough Effexor ER 37.5 mgs to take beginning that day. I told him I was already on Celexa 40 mgs once a day. He said, "Well, this is going to help your pain. It works to do that somehow, and I will try to explain it to you when I see you next if indeed it works for you. If you do not see some type of improvement in your pain/symptoms within 3 weeks, then call me. Otherwise I will see you in 6 weeks which will be after your visit to the Mayo Clinic, okay?" I said okay and we continued to talk about issues that we both had in common as well as other people both nurses and doctors. He was a gentle kind man. I was very warm to him and his approach to this extremely difficult time in my life.

Before I got home, his office had called according to my caller ID. So, I called them back, and already they had set up an appointment to the Mayo Clinic for Tuesday, March 19th. Wow, he didn't waste a bit of time, and I was even more impressed to think that I was not on a back burner. BUT I am to be married on the 22nd of March, and when I got the big fat packet from the Mayo clinic a few days later the words almost jumped off of the page into my lap that read PREPARE TO STAY FOR FIVE BUSINESS DAYS FOR YOUR FULL EVALUATION. Now this did shock me. I guess I didn't think it was such a big deal, but 5 days? No way, especially on the week before my wedding date! So, I called the clinic and talked it over with someone, and we changed it to the Tuesday after my wedding. March the 26th. So, now I wait to get married and to go to the Mayo Clinic. Very strange to me indeed. I almost don't know how to act. However, I do feel as if I am in good hands with Dr. McGee, and that is completely a new feeling to me. How thankful I am for him and I include him most gladly in my prayers.

Meanwhile, I am going to physical therapy with a wonderful woman by the name of Pam Porter. She is wonderful as is her assistant Karen. Until my Rheum visit, she didn't do what she specializes in which is Myofascial Release. So, the first appointment after my Rheum visit she started it. Indeed I felt that day after she worked on me ...... no pain in my lower back for about 3 hours or so. This was really strange to me. I hadn't been without that pain for about 3 weeks. The experience of Myofascial Release (heretofore will be MFR) was amazing and astounding to me and I indeed want to know everything there is to know about it including ......... Can I learn how to do it? Could I possibly help someone else with that expertise? It would be worth any amount of time I had to invest. That probably best illustrates how well I responded to MFR. Pam had me lie down on an air mattress and clear my mind. She turned out the lights, I closed my eyes, and because I already had been coming to her for a couple of weeks and knew her pretty well it was easy to clear my mind and completely relax under her direction. She took my head in her hands and began to slowly manipulate my head and neck in different positions ever so gently, slowly, fluidly. As she did this I began to feel sensations in the posterior aspect of my feet, my calves, my thighs, my buttocks, my low back, my midback, my upper back including my scapulas, and my shoulders. It was amazing. I cannot really explain what I was feeling, for there are no words I can find to describe it, however I know that I was experiencing something that felt like some sort of relief, a sort of letting-go. She continued to do this for about 15 minutes I think, time seemed to stand still for me. Then she got beside me and put one hand underneath me her palm upward, and the other hand on my pubic bone palm down. She held her hands there for about 5 - 7 minutes and indeed I still felt something, although I cannot explain what. Afterward, she said "Lynn, you continue to lie there for as long as you like, take a nap, whatever you feel like. You may leave at any time after about 10 minutes but please be sure and drink a lot of water this evening and tomorrow. Some toxins from your musculature may have been released and an increase in hydration will help to clear that on out." Before this visit I was considering just going to the PT once a week instead of twice a week, my co-pay is $15 per visit and $30 bucks a week was steep for me since I am not bringing any income in. But after the MFR there was no way that I was ever going to miss a treatment!! So, on my way out I made sure and had my appointment set for twice weekly, and I will do that for as long as necessary. I was also going to the inside pool at the Wellness Center that the Hospital I work for owns and runs. It is only $26 a month, so I go to an Arthritis class for an hour about 4 times a week if I can and can go as often as I like. Plus they have a smaller even hotter pool specifically for Fibromyalgia and other special needs patients.

What I am leading up to here is that the only difference in my treatment since my Rheum visit is the MFR, the Effexor, and the pool trips. I am slowing feeling better I believe. Then on Sunday, March 3rd 2002 an amazing thing happened to me! I woke up without any pain at all anywhere!!!!!!!!! I am serious!!!!!! I could not believe it!!! It was so strange not to have pain that I almost felt high on drugs or something (whatever that feels like)! Finally a light lit up at the end of my tunnel!!!!!!! I woke up early, let my honey sleep in and was just walking on air around the house!!!!!! I was thinking thinking thinking about going back to work, about doing the things I love, but especially about me and Kenny's future. It is obvious to us both that he is able to support both of us and indeed he had just made an offer on a house for us to have together (mine is for sale) BUT------ now, I might be going back to work pretty soon!!! So I am very excited!!!!!!!!!! I love intensive care nursing, and I had been looking into different nursing jobs that are not so much stress and standing at the bedside for twelve hours ... but I am happiest in the life and death situations of ICU and open heart surgery, so I am feeling like ---- All right, I am going to go back to doing what I really really love!!! One day without pain can lead to two, then three, then four .... on and on and on!!!!!!!!! Oh yes, I am excited and thrilled and feel almost reborn.

This absence of pain was for that entire day, Sunday. From sun-up to sun-down. 24 hours of absolutely no pain at all!!! On Monday, the day after, I woke up with some aches and pains, and I wasn't pain free, but it was so much better than before that day of no pain, that I thought it was wonderful as well. On Tuesday I had an appointment to go to a psychiatrist for depression secondary to chronic pain. Part of the holistic approach that the pain specialist is taking with me and I have no qualms about going. Hey, any and everything I can do to help my pain not be so binding and so much of a pain (forgive the slur there) I am going to do it. That turned out to be a very nice visit and I did enjoy it very much. I've never been to a psychiatrist before, yet I have always wanted to just to see if I was as abnormal as I think I am, LOL!!!!

Now, it is March 7th, 2002 on a Thursday and I go to PT this afternoon at 2:00 PM and then to Mississippi to meet my man and look at yet another house we may want. In just a few moments I will go to the pool and swim around after exercising with the arthritis class. I am a busy woman, yet all of my business is mostly aimed toward relieving pain and making myself more healthy. Also, I would like to add that I am 5' 0" and when I started having pain with the feet and all 2 1/2 years ago I weighed 115 lbs. At the time of my foot surgery in November 2001 I weighed 137 lbs. I didn't look fat, but I felt fat, and the immobility that I was beginning to really suffer from wasn't helping me any in the fat cell department and therefore wasn't helping my thoughts of my own self esteem any as well. Well, now after being to the pool for almost 3 weeks now and PT for just as long ...... I weigh 133 1/2 and my tummy is flatter!!!!!!!!! I feel better emotionally, physically and all the way around!!!!! I really shudder to think what would have happened to me had I not been referred to the pain specialist that started the PT, Pool and all.

I get married on the 22nd of March, go on a two day cruise out into the Gulf of Mexico, then when back on Monday the 25th, it's off to Jacksonville Florida to the Mayo Clinic for a maximum of 5 days ...... then the first week in April, my new husband and I go to Orlando, Florida for our honeymoon week. On April 18th I go back to Dr. McGee, and I am praying that by that time I will have a definitive diagnoses and can go back to work at least part time......... so I will check back with you guys then and let you know how it all comes out ...........okay? But of course, my name will be changed to Mrs. Kenny Sanderson which is a dream come true for me, and going back to work will be my next goal.

See ya in April!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Enjoy the beginnings of Spring, I know I will!!!!!

Lynn Vealey
Page last updated on March 12, 2002