tag:blogger.com,1999:blog-35163143239755193092011-12-15T19:14:11.580-08:00This is my periodic posting of my life with Systemic Lupus (SLE) and several overlapping diseases. I write about the affects that this disease has on my family and how we are learning to cope with the struggles and the unknown. My life has taken a major turn at the age of 40; one that I didn't see coming...but does anyone ever really see it coming?PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.comBlogger681100tag:blogger.com,1999:blog-3516314323975519309.post-65834703065689465012011-11-17T13:55:00.000-08:002011-11-17T15:15:38.673-08:00

Well...I should always trust that I know what my body is doing much better than my Rheumatologist does. This past August I had a temporary period of time that I felt relatively good. It lasted for a short two weeks and it just so happened while I was back east visiting my girls. I tried to associate it with being in a different environment and maybe that is what would be best for my SLE.

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-16196704931439662372011-11-04T16:06:00.000-07:002011-11-04T16:22:13.528-07:00

Benlysta is the FIRST medication specifically developed for the treatment of Systemic Lupus. The Lupus community was (as I) extremely hopeful during the trial studies for this medication. I was so excited when Benlysta was approved for the treatment of Lupus and began the waiting game for this medication to come to the United States. So, the UK is the first country to deny coverage of this

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-67019866314787215332011-09-02T19:54:00.000-07:002011-11-04T16:03:30.410-07:00

Almost a year has gone by and here I sit - wondering what great things I can write to you all. The first thing that comes to mind is thank you "Lois" for opening my eyes to the importance of writing this blog. I realized just how important it is to you (the follower) as it is to me. When I first started this blog, I was angry and scared. A few years later, I am still the same. It makes me

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-10807006123651999132011-01-16T20:17:00.000-08:002011-01-16T20:18:51.932-08:00

My apologies to everyone that has been following my blog. Life has been busy and it is my hope to get back up-to-date with it. Happy New Year to you all.

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com2tag:blogger.com,1999:blog-3516314323975519309.post-27147550926499958472010-09-03T12:03:00.000-07:002010-09-03T12:08:13.915-07:00

A Letter Written By a Lupus patient who apperently ended up Losing their battle with Lupus by Kym Tomlinson-Ryan on Thursday, September 2, 2010 at 9:09pm (just yesterday)A letter to be shared with friends and family by Theresa Stoops in FloridaWHAT YOU SHOULD KNOW ABOUT ME My pain - My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com4tag:blogger.com,1999:blog-3516314323975519309.post-86131547716031476942010-06-24T19:19:00.000-07:002010-06-24T20:34:28.768-07:00

After reading a comment that I just received from a reader on my last post, I just don't feel that I have much to complain about. I so feel for you and completely understand your situation. I am saddened that you do not have insurance; I just couldn't imagine. I shouldn't complain and yet as I write I can’t help myself. I truly want to let you all know that my intention for sharing this blog

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-6213821991555531752010-06-23T20:19:00.000-07:002010-06-23T20:38:58.265-07:00

I first want to say to my sweet husband that I apologize for not posting for so long. I know that you read my posts regularly to help you understand where I am emotionally with everything and without posting regularly; you are sometimes left in the dark. I love you. I don’t know where to begin. I have had so many downs the past couple of weeks; it feels like months. I was able to attend my

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-65505108474415693892010-05-06T16:29:00.000-07:002010-05-06T16:34:56.686-07:00

Unfortunately, I was not able to have my first IV Lidocaine Infusion today. I have had a 101 fever for most of the day and have not been able to bring it down. So, I have postponed until I return from my daughter's graduation. As for the Savella, I am on day 17 with not much to report. At this point, I think I could take it or leave it. Realistically leaving it is foremost in my mind. I feel

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-87254009953383002412010-05-02T19:23:00.000-07:002010-05-02T19:41:51.179-07:00

I wasn't planning on posting for a few more days, but I found out some interesting information about my sleep pattern. I met with a doctor at the Sleep Disorder Clinic to discuss the possibility of having Sleep Apnea. I was referred by my pain doctor as well and the Endocrinologist (my primary doctor had alluded to my having one done as well). I didn't really take the recommendation seriously

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-79638145654182716712010-04-29T19:47:00.000-07:002010-04-29T20:09:43.318-07:00

Continuing with the Savella without much side-effect. I went to the Pain Clinic today and they are recommending that I begin Lidocaine IV Infusions and Vitamin IV Infusions. I will begin with the Lidocaine IV Infusions for chronic pain by the 5th of May and if all goes well I will then have both infusions done on the same day beginning in June. The recommendation is to have Lidocaine IV

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-30047135573312979872010-04-28T15:01:00.000-07:002010-04-28T15:25:59.959-07:00

I have finished the Savella 4-week Titration Pack increase to this point:12.5mg - 1 per day (one day)12.5mg - 2 per day (two days)25 mg - 2 per day (four days)50 mg - 2 per day (twenty-one days). I am on my second day at the full dosage. The first day was pretty hard as I wrote about before. It then changed rather quickly on day 3 & 4. For the first time in quite some time, I had some

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-67973392820701001542010-04-20T22:03:00.000-07:002010-04-21T09:55:42.177-07:00

Well, I figured that I have been keeping all my readers/supports up on every treatment, doctor appointments, feelings, and such that I would like to take the next month to have you follow along with me on my journey with the new medication Savella. This will be like a note board each day telling you how I am doing, what it is helping, what isn't helping, new conditions or side/effects that I may

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-43992061491113103542010-04-11T22:15:00.000-07:002010-04-11T22:41:43.779-07:00

I have always loved spring. When I was a little girl I remember enjoying the sun and the pretty pink trees in bloom and the yellow flowers that danced along the open fields near my childhood home. I was a sickly child. I would struggle with pneumonia, bronchitis, urinary tract infections, kidney & bladder infections continuously. Somehow, it was normal for me to be sick. As I grew up and

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-22964633538092636782010-03-11T14:37:00.001-08:002010-03-11T15:08:04.348-08:00

Again, another month has past without posting. I appreciate everyone that checks back here. I apologize for the delay. February was a strange month for me mentally. I think I felt overwhelmed of course, tired of it all, and a little hopeless. Sounds so Emo as the kids say today. I really didn't have much else to post really. I was waiting to get in with the Pain Clinic and not much else

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com2tag:blogger.com,1999:blog-3516314323975519309.post-85265581047052059162010-01-29T15:58:00.001-08:002010-01-29T16:27:18.556-08:00

Now that it has been two weeks since my last post and many many blood donations to the laboratory, I have some news. I had my final appointment with my Infectious Disease doctor this afternoon. Today we went over the last round of blood tests that I had taken at the last visit. These tests were for the obvious infectious diseases (i.e., HIV, Syphilis, Hepatitis C, etc.). The good news is that I

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-52292008946154623192010-01-14T13:10:00.000-08:002010-01-14T13:38:42.706-08:00

Well I was sent to the Infectious Disease Clinic yesterday. I had the best visit to date with Dr. Perez. When I arrived he had a previous written sheet of notes based off of my many years of medical files. He first went over the information that he had gathered and then went into an hour and a half of extensive physical examination and another half hour on discussion. After this time I was

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com4tag:blogger.com,1999:blog-3516314323975519309.post-38781135432882940242009-12-28T11:18:00.000-08:002009-12-28T11:45:28.996-08:00

Christmas has come and gone. It was wonderful to have my entire family together excluding my oldest brother. He didn't make it to the festivities. I am now resting my body up for the new year. It is just amazing how much the little things, like not getting a nap can affect my muscles and overall pain levels. It was so worth it though to all be together.We of course had some usual family drama

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-80833350259430662932009-12-15T12:55:00.000-08:002009-12-15T13:03:06.643-08:00

I never thought that I would be excited to go to a doctor appointment in my life. Fortunately, the Endocrinologists' office called this morning and I have an appointment for tomorrow at 1:30 due to a cancellation. My appointment was originally scheduled for January 12th. I have been living my life in a coma-type state with such a low thyroid for no apparent reason. I am hopeful that we can be

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-9836412178035042552009-12-09T16:28:00.000-08:002009-12-09T16:47:25.931-08:00

Not much has changed since I last posted. I am still on the same medication plan and still waiting for the doc's to get their communication together and set my appointment with the Endocrinologist. The last I heard the Endocrinologist had my file and is reviewing my case. Their office should be calling once he has completed his review. I am feeling like it will probably be after Christmas at

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-59585425659656537272009-11-29T20:55:00.000-08:002009-11-29T22:34:58.447-08:00

Thanksgiving has come and gone. hmmm...Now we are focusing on Christmas. With the help of my husband and daughter we were able to hold a "normal" Thanksgiving feast; just the three of us. This is the smallest group that I have ever had to cook for and now that it is over I think that it was one of the best. It was physically draining but fortunately I could rest with the help. The day before

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-51783036621460240112009-11-14T20:44:00.000-08:002009-11-14T21:02:57.005-08:00

Hello everyone! Sorry I am falling behind on the updates. I am having a hard time writing because I am really tired of appearing to be so negative. Well, since Halloween I have had one procedure and have been having a struggle with my chronic infection. The doctors treated me with the seventh round of antibiotics and after my procedure at the Urologist they decided to me on "permanent"

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-86117874442842404142009-10-27T10:23:00.000-07:002009-10-27T10:34:29.196-07:00

I can't believe that we are at the end of October already. Some days when I am alone it feels like the days will never pass. Some times it feels like I can't make it another day when the pain is too bad. Some times the days pass like a dim blur hardly recognizing that I was in one at all. I have not been feeling very well emotionally and when I have those times I just kind of fold up into

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-30897053020061861452009-10-09T16:42:00.000-07:002009-10-09T16:54:05.715-07:00

I have been back now from my trip for a while and still recovering from the bug that I caught. I am pretty happy to say that I didn't end up going to the doctor for it and I believe I am on the tail end. It is big news to us when my body is able to fight off an illness. I have had a lot of personal stress going on at the same time, which has made for a difficult couple of weeks. Hopefully, it has

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-74381249430181402052009-10-01T12:45:00.001-07:002009-10-01T13:17:11.600-07:00

Well the picture says it all. I set out on a 25th anniversary trip for 10 days with my husband and friends. I really tried to pace myself giving some time to down days, just for resting, where I knew I could spare the time to prepare for the next stop. I haven't flown in quite a while and the airplane ride from Oregon to Orlando was very very tasking on my legs. Fortunately we had an evening

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com2tag:blogger.com,1999:blog-3516314323975519309.post-12477588501583511142009-09-17T23:10:00.000-07:002009-09-17T23:12:53.050-07:00

Well, I am going to try and take a trip with my husband, my brother, and some friends. This has been in the planning for months. I am very nervous about it, because I have been real ill lately and I am still not recovered from the car accident. I also still have my infection and they have prescribed the sixth round of antibiotics. I hope it works and that I don't get put into quarantine

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-60181199259789631142009-09-13T17:06:00.000-07:002009-09-13T17:19:47.429-07:00

Well, I went to the doctor this past Friday. Things were so horrible for me Thursday that I almost went to the ER. I have to be near death to go through the process at the emergency room. For anyone that has a bladder or kidney infection you know what I mean. My temperature spiked back up to 101.5 and the pain was excruciating along with the nausea, etc. All this while in the middle of my

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-76339830438085593342009-09-09T22:05:00.000-07:002009-09-09T22:08:19.137-07:00

I am so tired of the Lupus and all of its baggage. :-( I don't have anything positive to say. I guess I should just be happy that I am not in the hospital...that is something positive.

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com2tag:blogger.com,1999:blog-3516314323975519309.post-52874530251232239042009-09-04T19:55:00.000-07:002009-09-04T20:09:57.380-07:00

Well I am now on my fourth round of antibiotic treatment for my chronic bladder infection. I have been fighting this infection since April/May of this year. My specialist and internist have decided to send me to a Urologist for a complete workup to see why I can't shake this infection. There may be an issue because of inflammation that causes me to be more susceptible to infection. I have

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-61457241351288008462009-08-29T23:57:00.000-07:002009-08-30T00:16:17.210-07:00

I am trying not to get too excited, but today is the first day that I actually got cold. I haven't had the sensation of being cold since the last I can remember in April. I have had a bladder infection since April/May that I know of, and have been having consistent fevers for the past year+. We haven't been able to pinpoint if it is the constant underlying infection that I am fighting or

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com4tag:blogger.com,1999:blog-3516314323975519309.post-86991412262623188382009-08-20T16:34:00.000-07:002009-08-20T17:03:33.811-07:00

Well, as the story goes on and on regarding my bladder infection...I received the call this morning that after my second course of antibiotics - I still have the infection. The doctor has now increased the level of antibiotic, yet again, without having to go into the hospital for IV. I have now had this infection as best as I can tell since May. I will know in about 10 days if this one has

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-9715817544926268132009-08-14T23:45:00.000-07:002009-08-14T23:57:34.890-07:00

Today has been one full week since the car accident. I am very happy that there wasn't more damage to ourselves than the usual bruises and aches. However, I woke this morning with a rash all over my upper body. This is my first large rash in over a month. Some of the pain has began to dissipate and now have become more localized in certain areas. I have been trying to make an asserted effort

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-42523615918390986832009-08-12T23:19:00.000-07:002009-08-12T23:42:50.685-07:00

Well it has been five long days since the car accident. I have been having much difficulty with my right side with my thumb, thighs, toe, ankle, with severe neck and back spasms. I am still having shoulder pains and severe jaw pain and head pain. I fee like I have more movement, but it makes it difficult to move around the house, because we have six levels of stairs and I am unable to use well.

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-86545477812373098082009-08-09T12:40:00.000-07:002009-08-09T13:05:57.893-07:00

Unfortunately, my family and I were involved in a car accident yesterday. I was transported to the hospital by ambulance because of neck pain and lower back pain and spasms in my middle back. We were being precautionary because of my Lupus. We were there for about three hours initially and everything checked out well except for the typical muscle pains, etc. We were home for a couple of hours

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-34895369676782192232009-08-05T23:50:00.001-07:002009-08-06T00:02:46.595-07:00

It has been a challenging week to say the least. I am back to being given the run-around with my bladder infection. I have had the same bladder infection for over the past two months. I had another culture done last Thursday and wasn't called until Tuesday with the results. I had a lot of blood, white blood cells, and protein. The Rheumatologist wanted to put me on a different antibiotics

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-6841316395440740402009-07-30T23:01:00.000-07:002009-07-30T23:08:58.245-07:00

I finally saw my Rheumatologist this morning. My results of the echo-cardiogram came back good, but there is some fluid around the lining of my heart (trace fluid). This is typical with Systemic Lupus and is an indicator that I either am recovering from some inflammation or am in the beginning stages of the inflammation. The doctor was sure that it isn't anything to worry about, but I am

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-91612164334705672782009-07-29T17:50:00.000-07:002009-07-29T18:03:22.041-07:00

I may have just received a late birthday present! I had mentioned that I sent a letter of interest to be part of a Lupus trial a couple of weeks ago. Unfortunately, they didn't have a site in Oregon. I was notified today that the Seattle, WA site will be contacting me in a week or two. I am excited to do my part in trying to find a cure or reasonable treatment for Systemic Lupus (SLE). I am

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-26202992489207384452009-07-26T22:52:00.000-07:002009-07-26T23:07:30.983-07:00

I am very happy to have celebrated my 42nd birthday with my family today. Thank you my wonderful husband for making me feel so special and taking great care of me. He gave me the best muscle and back massage that I have had in some time. It has prompted me to get out my doctors prescription for Physical Therapy and get that started soon. I received phone calls from my two daughters that are

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-7945646855158926432009-07-23T13:10:00.000-07:002009-07-23T13:35:50.000-07:00

Well...not much to say today. I am just sitting here pondering if the decision that I made with my recent medication changes was in fact the right thing to do. Since I last posted, I sat down and researched each medication that I am taking individually for their side-effects. I have been having a lot of headaches, extreme nausea, chronic fevers, flushing, diarrhea, blurred vision, hair loss,

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-77595804411522851722009-07-20T10:56:00.000-07:002009-07-20T11:04:48.514-07:00

It has been over 50 years since there has been an approved "treatment" drug particularly for Lupus. The side effects can be even worse than the disease itself. The Largest Lupus Drug Trial Ever Completed is Successful! If interested please visit this link to read more about it:http://www.hgsi.com/latest/human-genome-sciences-and-glaxosmithkline-announce-positive-phase-3-study-results-for-benl-2.

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-57350609602554190052009-07-16T13:49:00.000-07:002009-07-16T14:06:14.438-07:00

I finished my antibiotic regimen but am unsure if the infection is gone. My gut tells me that it isn't; as well as the lingering symptoms. My next "actual" appointment with the Rheumatologist isn't until the July 30th. I am frustrated at their office because they are so overwhelmed with patients that they aren't able to give me the attention to follow-up with me on all of my test results. I

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-41368481257664460252009-07-14T09:06:00.000-07:002009-07-14T09:17:19.627-07:00

Well yesterday wasn't a good day. I did visit the Opthalmologist for my one year Plaquenil eye check-up and at least thank God, I am not showing any signs of Plaquenil build up in either eye. I am very thankful for that. I hope to hear from my Rheumatologist today on the results of my chest CT and Echo cardiogram as well as which Immuno-Suppresive medication she is moving me to. I will go off

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-58276593835395107142009-07-09T12:20:00.000-07:002009-07-09T12:30:21.682-07:00

I just received this from the Lupus Foundation of America:The New York Times website is featuring the stories of lupus patients from across the country as part of their Patient Voices series. With the use of audio interviews and photos, Patient Voices seeks to give a glimpse into the life of someone living with lupus. The stories featured are as diverse as the disease itself, and include actress/

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-71584375027959343022009-07-09T11:11:00.000-07:002009-07-09T22:00:21.338-07:00

I am doing all I can to research each additional medication that they give me or when they consider starting me on a new one; I will not take the medication right away and go to the Internet to do a cross reference of my own to check the interactions that an additional medication may have on my system. The best site that I use is:Drug Interactions Checker at //www.drugs.com/drug_interactions.html

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-55291683626343891782009-07-07T16:20:00.000-07:002009-07-07T17:07:15.798-07:00

Well, I received the early morning phone call from the Rheumatologist as expected. I called prior to the 4th of July holiday because I knew I had an infection somewhere and was hopeful that I would be able to get started on antibiotics prior to the long weekend. I should know better that things never move that fast. I have chronic fevers that range from 99 to 101 on a regular basis, so I get

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com3tag:blogger.com,1999:blog-3516314323975519309.post-37464256235803243152009-07-06T10:42:00.000-07:002009-07-06T10:58:27.233-07:00

Well, I had a lot of testing done in the past two weeks and am still waiting for all the doctors to get their information together and let me know where we are going with my treatment. I am still having difficulty breathing and a lot of headaches. My muscles feel like I have been working out, you know the second day after you begin to work out...that kind of ache. My joints are doing pretty

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-24807304963192331382009-06-29T23:17:00.000-07:002009-06-29T23:46:07.981-07:00

A lot has happened since I last posted. My overall health has been degenerating and I can noticeably feel it. I had my MRI repeat to check on my mass in the upper back left lobe of my brain and the good news is that the Neurologist believes it to be benign in nature and still isn't showing any signs of aggressive behavior. I enjoyed that description, but it didn't really help me other than it

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-12003422981332863572009-06-23T20:43:00.000-07:002009-06-24T10:22:46.098-07:00

As I said in my last post I had an Pulmonary Breathing Test done yesterday at Riverbend hospital. The entire test took about two and a half hours and was very well done and quite intense. I feel confident with the examiner and am waiting for the official tests after they have been read by the specialist. However, this is what I do know...I have lost 40% of my lung capacity and am now functioning

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-87543451643766900312009-06-22T00:36:00.000-07:002009-06-22T00:44:14.559-07:00

I can chalk this day up to a bad day for me all the way around. Now all I have to look forward to is a three hour Pulmonary Function Test tomorrow morning at Riverbend Hospital; I really don't want to do it. Friday I had my follow-up brain MRI and I should get the results back by Wednesday. I am just a little preoccupied with my thoughts with having to do these tests. I see my Rheumatologist

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-83897594420757058182009-06-20T12:31:00.000-07:002009-06-20T12:39:17.482-07:00

I returned from the trip on Tuesday, but I have been struggling with exhaustion and severe muscle and joint pain. I am not bouncing back as quickly as I had hoped. I have been having a problem with my memory and have made a couple of mistakes with my medications because of it. Last night I was not doing well because I had mistaken two medications and had doubled up on one that I should not

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-71402809108163096762009-06-13T20:44:00.000-07:002009-06-13T21:17:09.243-07:00

There were some rough days trying to get ready for our trip, but I couldn't be happier that I have pushed myself to my personal limit. Since being diagnosed and on so many medications I have spent countless days sick and hurting. I wonder sometimes if it is worth taking all the medication to endure the side-effects, but I now know that without them that I surely would not have been able to enjoy

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-39094411020999656342009-06-04T00:55:00.000-07:002009-06-04T01:15:19.861-07:00

Well this has been the first trip for me in two years. I have barely been getting to the store for meds, etc. and doctor visits. Well I am taking my first leap because I made a promise a long time ago to my little girl that I would never miss her 21st birthday. This promise was made prior to any knowledge of what had been cooking inside my immune system. All I can say is that I am not going to

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-41404659773468569022009-05-30T16:48:00.000-07:002009-05-30T17:15:59.050-07:00

I am not proud of it, but in the last two days I have been absolutely the most miserable person to be with both inside and outside of myself. It seems that the sudden withdraw of my most recent medication change has caused quite a big issue for me in going through the withdrawal process. The physician of course, told me that it would be just fine to suddenly stop, but apparently he has not been

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-81552726249828724342009-05-28T17:19:00.001-07:002009-05-28T17:46:15.013-07:00

Well over the past week or two I have been having some breathing issues, not too bothersome but quite noticeable. It could be so many things as simple as allergies but when you have Lupus they need to rule out if it is actively affecting my lungs. It could be medication or Lupus causing my breathing issues. They did my chest x-ray yesterday and it looked good with my oxygen level at 99 (very good

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-15281812006879264352009-05-24T16:59:00.000-07:002009-05-24T17:33:44.100-07:00

Since March of last year, I have probably been to a handful of movies at the movie theater. Going to the movies was a regular pass time. It has just become too difficult to get myself ready, drive, and sit in the theater seats for that long. If I have to stand in line, my family will let me go sit down and hold my spot for me. I have had to change my life completely to work around my good

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-293796859167852732009-05-19T23:19:00.000-07:002009-05-20T09:36:20.256-07:00

I am actually a little taken back by the fact that 25 years is actually here. At times it feels like it and when I stop to think about it, it has completely happened in a blink of an eye. If we sat down and wrote out all the happy monumental times and events that have happened, there are actually more good than bad. I believe that we tend to get overwhelmed by the amount of bad and tend to push

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com2tag:blogger.com,1999:blog-3516314323975519309.post-14116882372861256932009-05-17T19:35:00.000-07:002009-05-17T20:06:05.409-07:00

The last couple of weeks have been especially hard on my muscles and joints. The last couple of visits to my Rheumatologist she has recommended that I take Prednisone. I have already managed to put on approx. 75 lbs. since March of '08 by taking the medications that have already been prescribed and the word Prednisone just doesn't excite me; due to the usual weight gain that comes with it.

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-20929359164834592242009-05-16T11:59:00.000-07:002009-05-16T12:21:26.988-07:00

I have been contemplating since yesterday how to share this on my blog and if I really wanted to. I am so tired and angry about my illnesses and yet I am told that I need to take more pain meds and see a therapist to help me and my family cope with this long-term condition. It seems futile to just sit and talk to someone about what is going on, after all I would have to do so much to just get

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-24409170525228663152009-05-14T12:15:00.000-07:002009-05-18T12:39:13.111-07:00

I have felt pretty sickly all of my life and people seemed to get tired of hearing about it. It was always one thing or another. I had the usual childhood illnesses, but seemed to struggle the most with kidney infections, bronchitis, and pneumonia. Once when I was a child my fever reached 107 degrees for quite some time. Time went along and I would continue to struggle with chronic infections,

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-74812281795306092002009-05-10T12:58:00.000-07:002009-05-10T13:13:38.062-07:00

I truly am happy that I am a mother. It is at least three things that I have done right in my life that I am absolutely sure about. I have a +1 though and that would of course be marrying my husband and sticking with him. The trick was all in brainwashing him to love me a lot before I got sick on him. That is the trick! Mother's Day to me has always felt strange, but this year is a little

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-21622593338032131382009-05-09T18:25:00.000-07:002009-05-09T18:41:23.111-07:00

Well I have been the most active in the past two days than I have been in the past six months. It didn't consist of much, but I am physically and emotionally paying for it now. I drove a total of 4 hrs on Thursday and then on Friday went for a ride with my daughter and made a couple of stops. I didn't do much walking but again my rash is pretty upset at me and I can hardly move. I woke up this

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com1tag:blogger.com,1999:blog-3516314323975519309.post-3737843269082328392009-05-05T14:44:00.000-07:002009-05-05T15:34:43.219-07:00

As I had noted below, my husband had his heart incident on Friday and it has taken me until today to get my body back to where it was then. So, almost 4 full days of recovery from one traumatic hospital event. We have been through many things in our 25 years but it seems that it would take a day or at most two for me to emotionally/physically recover. Now it appears that it takes less time for

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com2tag:blogger.com,1999:blog-3516314323975519309.post-23034335700645360962009-05-02T22:01:00.000-07:002009-05-02T22:47:05.319-07:00

It is easy to say "just don't stress about it". I wish it were that easy, but when things happen to the ones that you love and you are helpless but to watch, controlling stress goes right out the window. My husband of 25 yrs had a severe health issue that scared us both last evening and today we are just counting our blessings that he is going to be fine; after the emergency room performed an

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com2tag:blogger.com,1999:blog-3516314323975519309.post-3457967629984677262009-05-01T11:54:00.000-07:002009-05-01T12:25:26.562-07:00

What can I say...the title says it all? I am so angry that I cannot find words. What has my life come down to? Should I have my family pre-open and loosely leave all the jars in the house open, just in case I would like to make the hike to the kitchen to prepare myself a PB&J. I may want to feel like I am successful at something...anything right now. However, I am defeated by the jelly jar. Where

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-61384235729279721812009-04-30T10:01:00.000-07:002009-04-30T10:23:05.887-07:00

Well for most people when they wake up to the sun shining it gives them a warm fuzzy feeling inside. However, it reminds me that I can’t go outside today. I have a severe photosensitivity to the UV in the sun or any fluorescent lighting and or any lights that are unprotected UVA & UVB lighting. My rash this morning is pretty minimal, so if I go outside or have too many lights on in the house

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com2tag:blogger.com,1999:blog-3516314323975519309.post-87528602186524190332009-04-29T09:58:00.000-07:002009-05-01T12:33:37.940-07:00

Don't you just hate it when you wake up and am confused as to where you are, what you are suppose to do, and what did I forget...worse yet WHERE AM I SUPPOSED TO BE! Well that was my morning. John had left for work and gave me a sweet kiss goodbye (that I remember) and he kindly set my alarm so that I would wake up to take our youngest daughter to school and then go to one of my (8) doctors

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-59392629536939302752009-04-28T13:07:00.000-07:002009-04-28T13:08:49.027-07:00

http://www.youtube.com/watch?v=rC71qpgf2mc

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-31277486459182005432009-04-28T12:48:00.001-07:002009-04-28T13:17:06.853-07:00

It is now 10:00 AM and I have made it down the one flight of stairs to the living room to take my morning medications (i'm late). It is so hard to just put my feet to the floor and make my way to the restroom. I feel as though I have ran a 10k marathon, all night, but without the benefit. My feet, ankles, knees, and hips all feel the "make believe" exercise that my brain feels as though I have

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com0tag:blogger.com,1999:blog-3516314323975519309.post-65596327215019692692009-04-27T21:01:00.000-07:002009-04-27T21:12:19.255-07:00

The initial thought that came over me as I was told that I had Systemic Lupus was just that..."Why me", "What's next" and let me off this ride. What a ride I am in for. I have been on this rollercoaster for many years, but at least now I have a name of the ride and it's not one of those thrill rides at the amusement park. None the less it is a ride that my loved ones and I are on together. I have

PoCo JOhttp://www.blogger.com/profile/16618561189513551752noreply@blogger.com2