LUANNE'S LIFE LIVING WITH LUPUS

What the $%&@

Mon, 23 Jun 2008 06:40:54 GMT

As we live our life and age we supposedly learn what are called “Life Lessons.” I’m not quite sure what these lessons have given me. I am still, at age 51, in a quandary regarding most things that life throws at me.

One thing that has haunted me for a while now is whether or not I am a good person. Being chronically ill changes the way many people view you. I have for a long time now come to terms with my illness. I have accepted my limitations.

What I cannot come to terms with how this thing “Lupus” has tinted the picture of me. How others view how I go about my day is the dilemma. Why should it even matter? But it does. Big time. And it hurts. It hurts almost as much as this illness does.

At least twice in the past month I have had to defend myself to those who lack any understanding. It has occurred to me that for the past two weeks I explain, rationalize or even better justify how I am living my life, And, it sucks.

No one knows better than I do how much my life has changed since “the diagnosis”. No one grieves more than I do for what (as my dear friend Loretta calls it) “Ms. Lupus” has taken from me.

Yes, the difference in me is remarkable. I am not the same as I once was. And, as many times as I try to explain it, I am not the same woman (wife, mother, sister daughter or friend) I used to be.

So why does it hurt so much when those who are unaware berate me on the subject of what I do not do.

Consequently I have become acidic. Not because I am ill but for the reason that I am discouraged having to constantly spell out that I am sick.

Those who live their lives with a chronic illness understand what I am trying to say here.

Having to explain why I cancel plans, yada yada yada.

As if I had a choice to become sick. As if there were a list of things presented to me and I chose to be ill.

Those of you who cannot understand what goes on in my body on a daily basis please stop berating me. It hurts. And, just so you understand something I not only have Lupus I have Rheumatoid Arthritis, Hughes Syndrome as well as many of the other crap that goes along with auto immune diseases. Again, I need to quote Loretta and say....... I am not complaining, just making a statement of facts.

Please take a moment to read from some of the following websites.

http://www.butyoudontlooksick.com/the_spoon_theory/

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=71&zoneid=9

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?articleid=14&zoneid=17

http://www.womenshealth.gov/faq/lupus.htm#11

http://www.hopkins-arthritis.org/arthritis-info/lupus/

Sat, 08 Mar 2008 15:22:16 GMT

I'm sorry that I haven't written an entry since my last one. I am doing okay. Not great. But better.

Thank you all for your comments and emails.

DEPRESSED

Wed, 02 Jan 2008 13:45:07 GMT

I'm depressed. I am tired of feeling this way. I can't move. Can't think. Can't do a thing.

FLARE, FLARE, FLARE ~~~ BIG TIME

Sun, 30 Dec 2007 11:57:27 GMT

What brings on a Lupus flare? No one (medical community) really knows what brings a flare on.

One web site says:

What can trigger lupus?

It is believed that certain things may trigger the onset of lupus or cause lupus to flare, these include- Ultraviolet light, certain prescription drugs & antibiotics, infections or viruses, hormones & stress.

There are a myriad of things that can cause a flare. I never know what is going to trigger one or when one will occur.

So right now I am hurting. I am experiencing paralyzing fatigue. My head is pounding. My mouth is full of sores. And my bowels are going crazy.

I can't take much more of this. I am going crazy.

Tags: lupus, lupus flare, lupus symptoms

LIFE IS GOOD ~~ SO WHY?

Sat, 22 Dec 2007 11:16:52 GMT

Life is good. We are building our dream house. I am here in SC with my family. Holidays are wonderful because we get to spend them with my brother and his wonderful family.

So could someone please tell me why I am sad. Why am I crying all the time? Why am I so irritable?

Warfare

Fri, 30 Nov 2007 20:57:40 GMT

For the last few weeks I have been battling my illness. Mostly it's the fatigue that is causing heightened problems. But, with this fatigue comes the intense pain. It's concentrated in my legs. Both bone and muscle pain. Although my hands and arms are beginning to give me fierce pain in those areas as well. Plus, I have a sinus infection and a urinary tract infection. The antibiotics are giving me horrible diarrhea.

These days I cry often. I'm really tired of this warfare that I have going on with my own body. This illness that has no cure. Walking is harder these days. Everything is harder these days.

Sun, 07 Oct 2007 11:10:29 GMT

I'm still not feeling great. But, this morning I did wake up in a lot less pain. What is great is that I (at least for now) think I found a good combination of meds to help with the pain. When I tested positive for RA, my NY rheumi prescribed 750mg of Nabumetone. I take two in the morning and two in the evening before bed. I hadn't been taking some of my pain meds. I couldn't handle the grogginess. This med is not a narcotic. Nabumetone is a nonsteroidal anti-inflammatory drug (NSAID) effective in treating fever, pain, and inflammation in the body. Nabumetone is used for the treatment of inflammation and pain that results from rheumatoid arthritis and osteoarthritis.

Here is more info on this med: http://www.medicinenet.com/nabumetone/article.htm

Taken with two 5 mg Oxycodones I feel so much better. It's only been one or two days with this combo and I really hope it lasts. I hope it last just enough for me to get my life back.

What gets me about these things I have is that it not only affects me, it affects everyone around me. Everyone's life has changed since I got sick. My family has had to pick up the slack here. My inability to do things has always bothered me. But, it bothers me more now because even though Gary comes home every night from building our house like a cripple, he still has me as his top priority. As much as he is hurting or is tired, he still has no problem doing stuff here. I feel horrible leaving anything for him. Unlike NY, here there is no delivery of food. No ordering Chinese or Towne Deli subs. No good pizza. He doesn't stop to eat during the day therefore I want to make sure there is a home cooked meal for him when he gets home.

The thing that upsets me the most is lately my mood has been very tense. You see when my lupus flares it's as if my brain is surrounded by this dense, crazy fog. I lose all ability to verbalize rationally. I get snippy and short tempered. I lash out. I wish that I was able to control it, but I can't. Even though I apologize it hurts me that I hurt those that I love. This causes me be depressed. Don't get me wrong I don't feel sorry for myself, I feel sorry for those I am hurting.

What happens is that I try to think or respond and I break out in a sweat and start to shake. I hate it. I hate what it does. Today I hate these illnesses. I am so tired.

The only good thing that is happening (of course, aside from my dream house) is that for some unknown reason I am losing weight. No dieting. No watching what I put in my mouth. The pounds are just melting away. The last time I weighed myself I was down almost 60 pounds. My clothing is actually falling off of me. The other day I had on a pair of jeans that were falling off as I walked up the stairs. Maybe I will be back to my pre illness ideal weight.

I slept pretty well last night. My legs and hips did not burn as much. Pretty little actually. I only woke up three times and actually feel rested this morning.

Have a great day gentle readers. Please keep me in your prayers.

Hugs, Lu

Wed, 19 Sep 2007 09:48:46 GMT

The last few days have been quite crazy. I wasn't feeling well at all this weekend. My back was killing me. I mean really killing me. I was afraid that it was because I was weaning down off the duragesic patch.

Then sometime Sunday night I was woken up with the most intense, stabbing, throbbing, killer pain in my back. It was just below my rib cage on both sides and radiated to the front. I had no clue what was going on. I ended up taking two extra pain pills and then going to the bathroom and it went away as quickly as it came. But it lasted about three hours.

I woke up on Monday morning feeling really great. I took Lauren to work, stopped by to see how the land clearing was going, stopped by to see Carol, my sister in-law, went to Walmart, the thrift store and the health food store. In the car on the way home that pain returned with a vengeance. I don't even know how I managed to get up the stairs to the apartment. But I decided to work through the pain and empty the dishwasher, make my bed, fold some clothes, etc. Then the pain intensified like 100%. Same place as the night before. I started to get a little scared as I remembered my NY rheumi telling me that he was getting concerned with my kidneys. There was blood and protein in my urine and some of the blood work came back off. Not bad enough to warrant further testing yet, but just a cause for concern and to wait and see.

Then I started feeling nauseous and vomited. In the bathroom my legs gave out from the pain and there I was laying on the bathroom floor. I couldn't manage to get up because the pain was just so intense. I called for my son for like 10 minutes but he didn't hear me. I managed to crawl into my bedroom and continued to call for him. By the time he heard me I was riling around the floor screaming in pain. The poor kid thought I was having a seizure or another stroke and called 911.

All the while in my head I kept thinking that my kidneys were failing. The paramedics arrived and took my vitals. I had a low grade fever and my blood pressure was very high. I don't remember exactly what it was but I think the top number was 180 or something like that. They brought me over to the hospital. During the 1 minute drive there the pain was mostly on my right side. He paramedic said....... classic kidney stones. He's seen it a million times.

At the hospital the doctor said the same thing. I was given something for pain and nausea and whisked off for a CAT scan. Let me tell you this, this hospital is amazing. The CAT scan results were back in less than 30 minutes. It showed my urethra was dilated and another stone in my kidney. The doctor said I passed at least two stones because I had two of these episodes. He also said the one in my kidney shouldn't give me any problems.

I feel fine now. It's amazing how quickly you feel better after passing a stone.

But this is the worst pain I have ever had in my life.

Tags: kidney stones, Palmetto Baptist Hospital

Mon, 03 Sep 2007 04:12:52 GMT

I'm in another episode. I hate to call it a flare because I could (and hope to) wake up tomorrow morning and feel fine. But for the last week or so I have been feeling horrible.

I'm quite sure that it's the APS that is acting up again. My INR levels have not been therapeutic for a few weeks. First high and now low. Two visits to the ER. Two sets of blood tests and two CAT scans. One set of each for high levels and then on Saturday another set for low levels. Each time it was head pain that sent me to the ER. Also because I have yet to obtain a doctor. I do have an appointment on 10/2. Hopefully one of the physicians recommended by the the ER doc will see me this week.

What drives me crazy is that when I explain that I have APS (among my other crap) I get that look. That puppy dog head tilt thing. It's frustrating to get that look from a physician. Also, when my blood levels come back I am told that 2.2 is fine. Yup, fine for those with artificial valves but not those with APS. Again the puppy dog tilty thing.

So, this evening I scanned my medical records and found the printout from the coumadin center in NY. This printed listed all my visits, what my levels were and the daily dosages. I found a period on the printout that had the same basic levels I have now. I'll follow that dosage schedule for now.

I am so frustrated.

Antiphospholipid Syndrome (APS)

Wed, 08 Aug 2007 12:48:34 GMT

Good Morning!!

I'm not feeling very well today. I believe that mostly it's the heat that has brought on this flare of sorts. We have been having record breaking temps of over 100 degrees. Aside from my usual flare symptoms, I've developed extremely bothersome rashes underneath my breasts. Therefore, I am going to stay indoors until this heat breaks. Thank God for my son who will be driving my daughter to Anderson today for her training. Thank you Sweetheart!

I want to talk a little bit about Hughes Syndrome. Otherwise called Antiphisiploid Syndrome. You can read about it at http://www.hughes-syndrome.org/.

Way before we even knew I had Lupus or RA I had fibromylagia. Then I started to experience very strange neurological symptoms. It was hard for me to explain these symptoms to my doctors. They were sort of like facial tingling but only on the left side of my face. What would happen is I would begin to feel pulling above my left cheek and this pulling would travel down the left side of my body.

Once I could put this into words my rheumi at the time asked me to remove my shirt and she examined my arms and breasts. What she saw there looked like a webbing of sorts underneath my skin. I never thought anything of this as it has been there most of my life as far as I can remember. She asked me a million questions. Questions about my pregnancies especially. Both of which had been riddled with complications. She ordered blood tests for what she called Antiphisiploid Syndrome. This doctor explained what APS was and she was sure that I had it. Sure enough the blood tests came back positive for APS and the Lupus Anticoagulant (which is not Lupus). Monthly blood tests continue to confirm this dx.

I was put on a baby aspirin a day but my symptoms continued. I was put on Plavix but still I experienced symptoms. Then I took both aspirin and Plavix. My symptoms lessened but did not disappear entirely.

Otherwise I felt fine. My fibro was pretty much under control and aside from these other symptoms which occurred only periodically I went through my life feeling fine.

I need to add at this point that during that period of time in my life, I was the perfect weight. Ate a high fiber, low fat diet. Drank at least 8 glasses of water daily. I didn't exercise regularly, but was very active and walked a lot.

One day (it was May 13, 2003, I remember that day because it was the day before my 45th birthday) on my way to work I started to feel these symptoms again. This time they were very pronounced. I was driving and almost at work so I continued on my way to work. In the elevator on my way to my office my coworker told me that I looked horrible and very pale. I worked at a nursing home and had to pass the nurse's station on the way to my office. One nurse, Pat, noticed me and sat me down. By that point I could hardly speak and was very confused. What happened after that is somewhat of a blur. All I know is that I was later told that my blood pressure was something like 210/170. 911 was called and I was rushed to the ER. Thankfully, my supervisor (the administrator of the nursing home) knew the administrator of the local hospital ER. So he called ahead and explained my medical history of APS. I was given TPA and some other IV things. My condition stabilized and was admitted.

It was decided that I needed to be on Coumadin which is a blood thinner. It is the prescribed treatment for APS. But until my INR (International Normalized Ratio ~ the level of anticoagulant/blood thinner in a person's blood) became therapeutic I remained in the hospital on a heparin IV. I think I was in the hospital for a week maybe less. It was agreed that I had a stroke.

Thankfully I was not left with any serious deficits. Minor left sided weakness and a seizure disorder which they are still not sure was caused by the stroke or the APS.

To this day whenever my INR goes too low I start to experience those symptoms. For the last five years I have had my INR levels monitored regularly. I even have a monitoring device here at home. http://protimetest.com/ It's done with a simple finger prick. I get my INR and PTT levels. But after all this time I know before hand just by the way I am feeling if my levels are too low or too high. Both of which are not good. With a low INR I am at risk for throwing a clot. An INR that is too high can cause internal bleeding. When this happens I have a headache and bruise easily. My gums will bleed when I brush my teeth.

APS has been misdiagnosed as MS. Here is a portion of the above mentioned web site:

Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries.

The main symptoms of Hughes Syndrome can include any of the following:

Headache or migraine	Giddiness
Memory loss	Visual disturbance
Skin disorders	Thrombosis - DVTs
Heart attack	Stroke
Pulmonary embollism	Multiple Sclerosis-like features
Gastrointestinal disorders	Pregnancy problems

Only until recently (maybe a year) has my INR levels remained therapeutic. Diet and other medications can cause a person's INR (while they are taking blood thinners {not Plavix}) to become unstable. Eating too many leafy green veggies (Vitamin K veggies) like spinach lower your INR. Taking aspirin or Ibuprofen.

Because I later developed Lupus and RA and had to be on more medications my INR levels were very unstable for quite some time.

Now that we have moved and have yet to fine a doctor to take me as a patient, I have been self testing. I got the name of a doctor in the area who may be accepting new patients as well as a local Anticoagulation Center from my next door neighbor. She is also the apartment complex manager. I plan on calling them later on today.

In the Hughes Foundation web site it says that once INR levels are therapeutic symptoms disappear. I believe this to be true. I was also told that the cognitive dysfunction will not repair itself. But I am on Memantine (http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a604006.html) and it has helped to avert any further damage to my brain cells. My brain is full of lesions.

I was still convinced that I also had MS. And, after many conversations with my neurologist it was agreed that I needed further testing. My MRIs showed the lesions but she ordered a SPECT scan ( http://www.precisionradiotherapy.com/PE-SPECT.htm) which showed cerebral vasculitis but no MS.

It's important that anyone with any of these symptoms be tested. Especially if you have livedo reticularis. Here is a picture of it.

Read through the Hughes Syndrome web site. Or do a search for antiphospholipid syndrome (APS). It was very helpful for me.

Tags: Antiphospholipid Syndrome, Hughes Syndrome, Hughes Foundation, Coumadin, INR, Anticoagulation, Atypical MS Symptoms