Thursday, November 17, 2011

BINGO Isn't Always a Good Thing

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. Unfortunately, about 24 hrs. after returning home I developed a terrible rash. "That's It", I thought. I am allergic to my house. This disease is tricky and I know that I spend a lot of time thinking of things that could be attributing to my disease process. Between September and November I began feeling really bad again, similar to when I first became really sick about three years ago. My rashes are bad, the joint pain horrendous, chronic headaches, severe fatigue, off the chart fever, etc. My knees have been the size of grapefruits and the color of pomegranates. Ignoring it is impossible.
Those of us that regularly see specialists for the management of this disease can understand when I say that our Rheumatologist can be our best friend and our worst enemy. Sometimes, I feel like I am arguing with her as to whether or not I truly have SLE whell all other doctors agree that I do. I had my regular visit on November 7th. My Rheumy wasn't too concerned with the symptoms that I have been having because she merely goes by the lab results and when the lab results contradict with the symptoms, she doesn't really appreciate how I am feeling. So, over the past couple of years it has been a tennis match with this disease. Well, because I was feeling so horrible these past few months my Rheumy wanted to run my labs for Lupus again. I didn't expect to hear anything from her office because they aren't too involved, but to my surprise and concern they called me twice! They NEVER call. The nurse said that my Rheumy wanted me to come in soon because my lab results weren't really good (in so many words). It turns out that my lab results show that my disease is fully active. All labs were highly positive with the highest positive results that I have ever had. This means that I am in a Lupus Flare.
I don't know why it surprised me and it threw me into a complete depression. It was like I was being told for the first time that I had SLE. I think it was the concern that my Rheumy is finally showing. That is both good and bad. I have so wanted her to take me serious because I feel like the disease is totally eating me alive but my labs were contradicting it. Now that we are all singing the same song my doctor is concerned. I am back on Plaquenil, which really makes me feel worse in some ways but the purpose is to slow down the disease process and that is worth trying.
If you are new to my blog, the way that my Rheumy is positive that I have SLE is by five criteria and they ALL have to be positive at the same time.
1. Positive ANA (you can be positive without any active disease)
2. Positive Anti-Smith (if you are positive on both 1 & 2 then you could possibly have Lupus)
3. Highly Elevated Sediment Rate (It is common for women to have a slightly elevated Sed Rate at different time without any reason).
4. Evidence of active disease (i.e., swollen joints, rashes, fevers, etc.)
5. Positive skin biopsy
This past November 7th the planets aligned and my Rheumy called BINGO! It is so frustrating to have any combination of these at any one time. Well, now my Rheumatologist has completely changed her angle of attack and she is fully engaged with trying to slow down the disease. I am a bit angry because I feel like I have lost three years to this disease that I could have been working on it through medication(s). On another hand I am thankful that I didn't have to take stronger medications for the past three years.
I am very sensitive to medications and they tend to cause more damage than good for me but when I get to this point, I don't have a choice. So, Plaquenil it is...again. I started it today and will be taking it slow to ramp up to the full dosage. I am now back to seeing my specialist monthly instead of every three months.
Managing this disease feels almost impossible. There isn't a week that goes by that I am not in a doctors office. I regularly see my Internist, Rheumatologist, Psychologist, Pain Specialist, Endocrinologist, have periodic trigger point injections, endure Lidocain Infusions, and spend a lot of time at the Pharmacy (my hubby does this for me mostly). So, if you are new to this disease I want you to know that it really takes an Army to manage this process. It especially takes a strong support system.
Today I am just trying NOT to cry because I am overwhelmed.

Friday, November 4, 2011

UK Insurance Co. to Deny Payment for Benlysta-Petition

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 medication. We must be pro-active so that this doesn't pass. If the UK is successful in blocking the payment then the US will surely do the same. Insurance companies are not in the business to help with treatment but are most interested in making money. By blocking payment for this medication, they will only cover the current medications that have been prescribed for the past 50 yrs. that do little to slow the progression of this disease process. Please take a moment and sign this petition for the UK and hopefully we won't face the same issue in the United States and other countries. For those of you that are suffering and for the family and friends that stand by you - we need ALL options available. We don't have time to wait another 50 yrs.

Friday, September 2, 2011

Just a Little Lupie

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 angry that there haven't been any changes with my health other than more illness. It makes me sad that I can't give you all any magic words that can make me or you miraculously better. I sit here dumbfounded as what to write. However, I WILL write! When I was first diagnosed, I was much more scared than I am today and that is something to share. Receiving a diagnosis is just that...a diagnosis. It isn't the end of the world but an obstacle that we can learn to maneuver around, coexist with, handle it, cry about it, get angry about it, and just get over it! They say that there are many levels to grief and I feel as though I am stuck in the angry chapter. So angry that I couldn't write for so long because I didn't have anything constructive to share. I think that those of us that are dealing with loss (of any kind) can truly get what I am saying/feeling. Now, how do I get out of this phase? Now that I have shared with you all where I am on this journey, I will do my best to bring you up to date. I am sorry "Rose" that I did not respond to your post from so long ago. I intend to get my act together and get back to you on your question. I have too many things rattling around in my head as I type this post. I will have more constructive things to share with you once I get a handle on all of these thoughts, feelings, and ideas. For now I am feeling just a little Lupie!

Sunday, January 16, 2011

Just a Little Behind the Ball

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.

Friday, September 3, 2010


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 Florida

WHAT 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 off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability

My forgetfulness - Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.

My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.

My uniqueness - Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,I have shared these thoughts with many "Lupies", as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine -- Do not judge them as you may Not know their Inner pain.==== And always remember I LOVE YOU! ====