Kendra's Blog

Lupus whisperer

2012-01-23T23:02:00.001-06:00

Just call me Doctor House. I can smell Lupus miles away. My dad was admitted to the hospital on Saturday night with what appeared to be a blood stream infection. He was put on antibiotics and told the infection had damaged his kidneys. Today we found out that they can not find any infection. They found nothing on a full body scan. His white blood cell count was very low as were his platelets. I told them they needed to check autoimmune. I told them I have had 2 Lupus "attacks" that were exactly like that, drop in white count, spike in fever, no infection to be found. Also, if there is no infection why does he have kidney damage. I am almost sure he had an acute Lupus flare. Then I started to wonder why now. He has been under stress but the I thought about the fact that he took up juicing and some new supplements recently. I just bet he boosted his immune system too much and it triggered a latent Lupus. Tomorrow he sees the Rheumatologist, so hopefully we get some answers!
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Nice days

2012-01-18T01:57:00.001-06:00

Yesterday was my 34th birthday. I don't expect much out of a birthday these days just some time with my loved ones, a nice dinner, maybe a present or two. :). And it delivered. The most special part was the hundreds of birthday wishes I got on FaceBook in many different languages. It made me feel very appreciated! Today was also nice. I have been working on a Products Update Newsletter for weeks now and I finally got the Lupus version out tonight. It will make the Fibro version easy to finish up tomorrow. We also got in our new Double Ring Necklace and Ribbon Ring Earrings. They were so cute I put them on immediately! Tomorrow I have a mani/pedi appt. that's always fun. Vacation is getting really close!
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Vision

2012-01-13T21:54:00.000-06:00

I have been having a terrible time with my vision. I have been legally blind in my left eye since I was 5. My right eye however has always been great, until about 2 years ago. I suddenly noticed trouble with my distance vision was fading. I got glasses that I never wear because I can't see up close with them. I have noticed it getting worse though to the point where I can't read the TV without my glasses. Tonight I was shopping and couldn't read the aisle signs. It's scary! I haven't been to the eye doc in over a year so I need to get there!
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Results

2012-01-12T23:49:00.001-06:00

I learned something important about myself tonight. I am very results motivated. Ok so it's not exactly earth shattering, but putting it together in my mind that way will be helpful when I am having trouble motivating myself. A couple weeks ago I found out that I had lost 18 lbs. over the last couple months. Tonight I braved the Wii Fit scale again and I have lost another 4 lbs. Yahoo! It sure made those Girl Scout cookie cravings go away! No doubt the 1mg decrease of Prednisone is helping. I am also drinking a Slim Fast shake when I don't feel like eating to keep my metabolism going. I have also been trying to move a little more too. The stairs in our new house help that. We will also have our new baby cousin coming for "day care" soon. That is in addition to an almost 3 year old. That ought to get me moving too! I am just so excited to be losing weight! It really makes me want to work harder! I may have even done a song or three on the Just Dance video game.
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Stress

2012-01-10T19:12:00.001-06:00

Today was a better day. I woke up feeling decent and motivated. I got several new items posted on Cure4Lupus.org and Cure4Fibromyalgia.org. I hit a wall this evening though when stress started to get to me. My brain just shut down. I am going to take an ativan and go to bed and expect to feel better in the morning. I just can't deal with stress. It's a killer.
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2012-01-07T23:11:00.001-06:00

I have been feeling sleepy a lot lately. My doc has me reducing my Prednisone so I am guessing that is why. Two days ago I reduced another quarter milligram bringing me to 9mg and today I am very achy and tired. It is so frustrating choosing between quality of life now and quantity of life later. Prednisone is so awful but it gives me a life. Its crazy that one stupid milligram makes such a difference. I am not sure what I will do except I won't continue to reduce unless I start feeling better. I think I will give my body a chance to adjust to the 9mg though. Of course my doctor will be consulted but at this point it is mostly about how well I can tolerate it. He wants me on as low of a dose as I can tolerate. I have a big vacation coming up so I sure hope I feel stronger by then!
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New Year

2012-01-03T19:57:00.001-06:00

We had the best New Year's Weekend. We went to the mountains of Arkansas to visit family. We unplugged from the world. We got no cell reception, no computers, nothing. We played cards, talked, napped, and enjoyed each other's company. It was great! Now our batteries are recharged and we are ready for the new year!
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Merry Christmas

2011-12-25T17:56:00.000-06:00

We wish everyone Happy Holidays! It has been a long time since I have written a blog post. Things have been very good but very busy! We got moved and almost totally settled in. Our new office is a lot bigger and much more functional. We hope to hire an employee soon. It is very difficult at times to keep up when its busy or I am sick. We are going to work very hard in 2012 to improve our customer service and shipping times.

We have had a very nice holiday season. I typically feel pretty good this time of year. The family, excitement, cooler weather and extra exercise I get do me well. I typically overdo though and by January I crash. I tried not to do that this year. I did some baking, but less than usual and I spread it out. We made a big Thanksgiving dinner, but Christmas was more laid back. I didn't stress about shopping, I did most of it online. The hardest thing has been remembering to take all of my pills when I am busy. I have to take pills 9 times a day now and it is very easy to lose track of time.

I look forward to the new year! It is always a time of renewal for me. Both my husband and my birthdays are in January and our 10 year anniversary is February 2nd. We are finally going on a honeymoon and renewing our vows! We can't wait!

2011-10-31T23:18:00.001-05:00

Moving is in full swing. We have both places until the 15th so we can take our time. It couldn't happen any other way! The new baby is coming tomorrow! We can't wait! Life is pretty fantastic right now. I don't feel as good as I wish I did, but I am making it ok. Fall walk season is coming to a close and the holiday season is among us. I have been working on the 2011 Christmas ornaments but haven't had a really great idea yet. I am leaning toward making them out of purple balls this year. I will figure it out very soon!
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Good Stresses

2011-10-20T10:33:00.000-05:00

Things have been going well. We have been quite busy. We are getting ready to move. Our office is just too small. Cure4 has expanded and the office needs to expand with it! Moving is so stressful and my least favorite thing in the world, but at least it is for a good reason and it is exciting. I have been able to do some packing here and there. I usually over do it and end up needing to rest for a couple days. It is a good thing we have some time! We are also on baby watch. My cousin is going to have her baby any time now. We take care of their first son while they work and will help out while she is in the hospital. We can't wait to meet the new little guy!

I did see my Rheumatologist last week and all my numbers have returned to normal, for me. I asked him about something to treat my Raynaud's which has been worse since going off one of my blood pressure meds. With winter coming he gave me a small dose of Norvasc to hopefully help. We also agreed to try to get my Prednisone down a milligram or 2. I don't know how that will go, but it sure would be nice. I have to go super, super slow to prevent my Pseudotumor from acting up. I will start with reducing from 10mg/day to alternating between 10 and 9.5mg every other day for 2 weeks. Then 9.5 everyday for 2 weeks. That may not be slow enough I may have to spread it out to a month on each dose, we will see. Every little bit I can get down though will help! http://www.drugs.com/norvasc.html

Make Lemonade

2011-10-02T23:27:00.000-05:00

We had a wonderful weekend with family! We drove to Des Moines, IA, where I grew up, for one of my cousin's wedding. It was absolutely beautiful both aesthetically and emotionally. I have never seen a more stunning bride! She married her prince and we could not be any happier for the whole family. It was also great to see my aunt and uncle so thrilled! I did pretty well physically. I am not back quite to my normal self but I am doing tons better! I get a little dizzy from time to time, but a Powerade is enough to straighten me back out. I get a little achy, but my meds take right care of it. I am building my energy and stamina back to my normal levels pretty steadily. I was able to dance at the wedding just a little bit. 2 weeks ago, I wouldn't have been able to go. My family is so helpful and accommodating, we brought a chair out to the side of the dance floor and I was able to participate more that way. I recommend looking for things like this. It may feel embarrassing at first but it is so much better than sitting in the corner feeling sorry for yourself! I refuse to give Lupus/Fibromyalgia more than I absolutely have too! I WILL dance at a wedding no matter how I have to do it! I WILL continue to go shopping even if I have to take a wheelchair. I WILL bake Christmas cookies, even if I have to sit on a chair in the kitchen to do it! Lupus has to change my life, it does not have to devastate it! It's funny, when I was a child and teenager and I was going through rough times, people would always tell me to make the best of it. I HATED to hear that, especially from those that were making the decisions I had to make the best of. But, I can now be thankful because I am pretty good at making the best of things now and it makes my life so much more rich!

I was wrong!

2011-09-24T15:24:00.000-05:00

I thought the "Perfect Storm" I experienced (see previous post) was the end. It was just the beginning! I felt ok for about 7 days, mild stomach cramps and slight cold symptoms. The belly skin infection was improving. I had very little of an appetite, I always felt full. So by last Thursday I was dehydrated again. I went for my third ER visit in 10 days and got two more bags of fluid (up to 6 total). My belly wasn't completely healed so I got a new anti-biotic. They also gave me Regalen to help empty my stomach. Meanwhile my husband, who has Rheumatoid Arthritis, had a raging ear infection and cough. He happened to get a TB test and it came up positive. We were panicked. Turns out it is totally dormant and unrelated to his symptoms but it scared us. I can't be tested until I am totally better.

Saturday my abdominal cramps got way worse and by Monday night nothing would ease them. So, back to the ER, another bag of fluids and a prescription for Percocet. They seemed to think it was viral because "my blood work looked normal for me." The next morning when I saw my own doctor she strongly disagreed and said my white count had been plummeting for 2 weeks. The same was true for my platelets and red blood cells making me anemic. She stopped my CellCept for 6 days now, and CT scanned my belly. I went back Thursday (2 days ago) to find out there was no no gallbladder issue, not my pancreas, not a abdominal infection or abcess in my belly. My counts were coming back up and my skin infection was almost gone. I got a bag of fluids and I was told to triple my Prednisone for 3 days. That has got me energized but I am already feeling dizzy (dehydrated) and the lack of CellCept is causing arthritis, and pain in my kidney area (hopefully muscular). Overall I am out of bed for the first time in 2 weeks and Vicodin does make the pain manageable.

I am super thankful to my mother and her husband who drove 2 hours to come help us get our house cleaned up and get Cure4Lupus.org and Cure4Fibromyalgia.org orders shipped. We would have been behind for a month without them! Thanks mom!!!

2011-09-10T21:05:00.001-05:00

I was able to spend some time with my grandma this afternoon in her nursing home for the time. I am so happy she will do so much better there and she is pretty happy with it too. I haven't been able to do much but I have been doing my best! I am also really working on a positive attitude.
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The Perfect Storm

2011-09-08T23:31:00.000-05:00

My holiday weekend did not turn out the way I expected!! I thought we were going to Des Moines for a few days, go to a toddler's birthday party, and come home to clean. Not so much. Thursday I find out my grandmother is moving to the nursing home and we have to clean her apartment out right away. So we went over early and helped with that. I did pretty well sorting and organizing and directing. I did not however take good care of myself, not drinking enough, and I missed a few doses of pills. Sunday afternoon I would pay for it! I started getting dizzy and weak Saturday evening. About an hour before the birthday party Sunday it turned into blackout zaps and disorientation. My husband took me straight to the ER. I got fluids and a script for antibiotics because the found a small patch of cellulitis on my belly. I felt much better but by the time I got home I was a little dizzy again. Monday I felt even worse. The infection had become painful and red, the dizziness had turned into what I later learned were head zaps every 30 seconds, and every joint, muscle, and inch of my skin hurt. I went back to the hospital, this time in Omaha where they know my history. All they could do was give me pain meds, fluids and more antibiotics. They did nothing for the head zaps which was the worst part. I was like time froze for a second while I was shocked in the head. By the end it was every 30 seconds or so. I later found out I had missed 4 days of my Paxil (anti-depressant) and head zaps are a known side effect of withdrawal. 48 hours of sleep/rest and taking my meds right and I feel human again. I think we picked up a bug in the hospital though because we have fevers, aches, and sinus symptoms. One of the biggest reasons grandma moved to the nursing home is because she couldn't take her medicine correctly, maybe I need to go too.

2011-08-31T00:53:00.001-05:00

The last 10 days or so have been mostly a blur. I have been pretty heavily medicated due to the knot in my back. It has not eased at all. It did move a bit due to my husband massaging it. That was a big help because it reduced the numbness I was getting in my arm. I did call today and make an appointment with my doctor tomorrow. Otherwise things are going well. I am just trying my best to be as awake and aware as possible.
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Eased my mind

2011-08-23T22:43:00.000-05:00

Great news from my doctor today, the results from the 48 hour heart monitor. They said I had 10 premature beats but no abnormal rythms. Basically harmless palpitations. They can be caused by many things but I would guess my electrolytes being out of balance is the cause. Now I don't have to worry about it.

2011-08-22T21:47:00.001-05:00

I have been pretty much useless today because I have been dosing myself with pain killers and muscle relaxers. The knot in my back is relaxing though. It feels much better and my fingers are no longer numb. I did manage to send the newsletter out. You can check it out here: http://cure4lupus.org/store/newsletters/newsletter811.htm
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2011-08-22T00:42:00.001-05:00

Football season I'd drawing near and we are excited. It is one thing that gets us up and out for fun. We had our fantasy football draft today, much fun. The rest of the weekend was moderately productive, better than the last several. Fall Lupus walk season is right around the corner so we have to be ready to be busy. I put together a newsletter that will be going out tomorrow. I am still having trouble with my left side pain and fatigue. It is actually worse, but I have figured out the problem. I have a HUGE knot/spasm/pinched nerve in the back of my shoulder. It is extremely painful and is shooting pain down my arm and leg and up my neck. My whole hand is numb and tingling. My husband did his best to massage it out and it helped a touch. I have a hot pack on it now and I took extra muscle relaxers and pain killers, that should help!
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Feeling like a Gemini

2011-08-16T00:08:00.001-05:00

Does anybody else know how it feels to have one side of your body feel completely different from the other side? It is the strangest feeling. My right side feels pretty decent, no pain, some energy, pretty good. The left side however feels awful. It is heavy, droopy, tired, swollen, puffy, and painful. I did miss some pills yesterday, most importantly 2 doses of my diuretic. That is why the puffiness and heaviness. I just don't understand why its only one side. I guess I should be happy its not both. I have to figure out a way to be more consistent with my pills. Its hard because I don't have a consistent schedule. Sometimes I get up at 9am and there are days I don't get up until late afternoon. On days where I sleep 18 hours it is impossible to get 5 doses of pills in 6 hours. It is a constant tightrope act trying to decide which pills to take when. Any advice?
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Today is better

2011-08-12T17:31:00.001-05:00

I am still feeling very sleepy but some things are being worked on. I went to my doctor yesterday about the extreme fatigue as well as heart palpitations that wake me up repeatedly from sleep. There are several possibilities so she is running lots of blood work, did an EKG (was fine), and I am going to wear a heart monitor for 24 hours to try to record it. It always feels better just to know its being worked on. I am also going to dinner and a movie with the hubby. Nice to get out of the house and reconnect.
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Not good

2011-08-10T22:57:00.001-05:00

I am really struggling right now and I need to be open about it. I am just not happy with the way my life has been recently. 2 years ago I felt like I was finally filling my life with all the things that made me happy. I was very happy and satisfied with where I was in life. 2 years later I still very much appreciate all of the wonderful things in my life. I must admit however that I feel a little stagnant. The good news and probably part of the cause of these feeling is that big changes are on the horizon! I am thankful for my lovely home, but we have out grown it. We are moving in Nov. and I guess I am just anxious for that. My husband is amazing and I feel ridiculous complaining about him at all, but lately we have just had different priorities and it has caused some friction. But, the real problem is the way I feel physically. I just feel defeated, like it is so out of my control and I HATE that! Sleeping 18 hours a day would make anybody depressed! I know it is temporary and there will be better days but I try my best to live in the now, and the now really sucks!!
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2011-08-09T22:37:00.001-05:00

I have been working as hard as possible this week on posting new content on http://Cure4Lupus.org. I have added some Lupus Research News, several Lupus Tattoos, and lots of new events on the Lupus Awareness Events Calendar. I have to work when I can and in small doses. Today I slept until 11am got up had breakfast, and answered emails. By 12:30 I couldn't keep my eyes open. I layed down and the next thing I knew it was 4pm. I entered some events, processed some orders, had dinner and again at 9 I was too tired to concentrate. It is so frustrating! It has been like that a lot lately! I don't feel achy or anything else, just sleepy, all the time. I am doing my best to be productive, keep a good attitude, and hope for better days!
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Up and Down

2011-08-05T19:51:00.000-05:00

I have been all over the place with pain, fatigue, GI issues, etc. Some days I feel decent and some days I can't get out of bed. I am doing my best to just take advantage of the good times and get through the bad times as quickly as possible. I have been trying really hard to get the website ready for fall Lupus walk season. It is coming soon and we are not ready! I really love working on both Cure4Lupus.org and Cure4Fibromyalgia.org! The only hard part is not being able to do all the things I have in mind for it! Hopefully we will get somebody else to help us soon!

Where has the time gone?

2011-07-21T23:11:00.001-05:00

As of today I am officially hydrated for the first time in at least 6 weeks. Staying hydrated is my biggest challenge! It seems so simple to others and it doesn't seem like that big of a deal to be dehydrated but for me it's huge. I have to take a lot of diuretics to keep fluid out of my head, ankles, etc. Too much causes disabling migraines and vision loss and could lead to blindness, my biggest fear. The problem is that the water pills also deplete my potassium and sodium and then my kidneys work even less than normal. Consequently, I feel weak, tired, nauseous, foggy brained and horrible. It comes on slowly though and I don't even realize what is going on until I get re-hydrated and suddenly I can get out of bed again and I can think clearly. I also feel so mad that I have just lost weeks or months of my life!

I am also mad because my doctors always argue with me. I tell them I need fluids and they say it must be something else because my symptoms aren't typical dehydration symptoms. They run the blood work and every time I am right. I have been through this probably 8-10 times, I know what it feels like! The reason my symptoms are odd is because my kidney function drops and that is what I am feeling. I just figured that part out tonight though so let's hope they listen next time! Until then, they upped my potassium dosage, so hopefully that will keep me balanced for a while!
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Join Forces

2011-04-22T12:41:00.001-05:00

I am watching an old episode of "The Talk" on my DVR and Holly Robinson-Peete is talking about her son with Autism and their foundation that offers support to families struggling financially with the disease. I am of course reminded about all the Lupus and Fibromyalgia fighters that are also struggling financially. It occurred to me that instead of raising all this money to help these families we could all join forces and spend that time, energy, and money demanding our government do something. Nobody should go bankrupt or worse, not be able to get care due to not being able to pay medical bills. 40,000 Americans die every year because of this! This has to end! I don't care how, I don't care if it is government run or not, I don't care who pays for it, I don't care if my taxes are raised, I don't care about any of the details, just make sure money does not effect how much treatment a sick person gets, that's it. I know it is more complicated than that but it is so important that we need to make it a priority to hash it out and not leave the table until a solution is found!

Slammed

2011-04-19T03:46:00.001-05:00

With Lupus Awareness Month and Fibromyalgia Awareness Day coming up, we have been absolutely slammed busy. I have been doing as much around the house as possible. I have been feeling great thankfully! I am building stamina and strength like I haven't been able to do in years. I still can't lose a pound. I am not focusing on that though. My goal is just taking advantage of the good times to build strength and extend it as long as possible.
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My Concerns about Benlysta

2011-04-12T14:21:00.000-05:00

I am not a doctor and the following is strictly an opinion based on what I have read so far which is by no means comprehensive. I am in no way recommending anyone take or not take this drug. Talk to your doctor if you want to know more about this drug and how it relates to you. I am feeling frustrated and disappointed by the information I am reading about Benlysta.

Huge problem #1: it is insanely expensive! Each vial costs 1477.22. That makes an annual cost for the drug around $35,000. Completely out of the question for the uninsured, and even for many people with insurance due to enormous co-pays.

Issue #2: It is given intravenously. That is not necessarily a bad thing but it does make it a bigger deal then a simple pill.

Issue#3: It is only for people with active musculoskelatal, cutaneous, and immunological SLE that is not responding to standard of care. It has not been studied on severe active Lupus nephritis or severe active CNS Lupus.

Problem #4: During clinical trials depression was numerically more common with Benlysta than with placebo. They even had 2 suicides. Other possible side effects include opportunistic infections, anxiety, and heart problems.

Problem #5: There is serious concern that this drug loses efficacy over time due to a drop in response rates between the 52 week study and the 76 week study.

Problem #6: Those of African American or African decent are 3 times more likely to get Lupus, however there was a small number of patients in the trial from this ethnic group. The black participants that were involved did not appear to respond to the drug. Safety in black patients is not even certain.

I don't really understand who this drug is for. Caucasians with severe active Lupus that does not affect their kidneys or central nervous system and has not responded to standard treatment. They also have to have AMAZING insurance or be wealthy. They have to be willing and able to take IV treatments monthly and are at risk of depression, anxiety, heart problems, opportunistic infections, and even suicide. I can't imagine very many cases where the benefits outweigh the risks.

There are however some great benefits to having this drug approved no matter what it's complications.

Ending the over 50 year draught in Lupus treatment was so needed.
It offers hope that new treatments are being investigated and that we may one day have a cure.
Having this drug approved has put Lupus in countless newspapers, magazines, television shows, blogs and more.
The makers of this drug will be advertising the drug raising awareness of Lupus.
Every study helps us learn about Lupus and how it works no matter the outcome.

Sources: http://www.medscape.com/viewarticle/739018, http://www.rheumatology.org/publications/hotline/2011_03_15_belimumab.asp, http://www.drugs.com/benlysta.html

World Lupus Day

2011-04-05T00:31:00.001-05:00

May 10th will mark the 7th annual World Lupus Day. We have come a long way in that time but still have a long, long way to go. About 10 days ago I asked the Governor of Nebraska and the Mayor of Omaha to proclaim the day. Saturday I got a certificate of proclamation from the Governor. You can do the same, it's easy. Most governor' and mayors' websites have forms for proclamations. You can simply send them a copy of the World Lupus Day Proclamation found on http://cure4lupus.org. Click on World Lupus Day.
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Must admit it

2011-03-29T22:13:00.001-05:00

I admit it, I over did it Sunday. I layed in bed and the pain started to build. I took a couple Tylenol but the pain, mostly in my right hip, kept getting worse. After about 4 hours of tossing and turning I got up took some Vicodin and muscle relaxers and went back to bed. I slept much better but woke up as soon as the meds wore off and felt like I had been beaten. I hung with my hubby an hour or so and went back to bed with more meds. I slept hard from 5pm to about 2am. I felt much better. After some fluids I slept another couple hours. Today I feel achy and groggy from sleeping so much. Hopefully tomorrow I will be back to normal. It's a bummer to lose 2 days but if it ultimately builds my stamina its worth it. Next time though I will try not to push so far, that is always the hardest thing!
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Hot Baths

2011-03-28T02:57:00.001-05:00

I wanted to share how well I am doing so much that it inspired me to bring back this blog. Things have been going well. I attribute it in part to hot baths. Every Sunday night for the last month, and sometimes during the week as well, I take a bath as hot as I can stand it with 2 cups of epsom salt. I don't know if its the warm water, epsom salt, or just the refreshing feeling but I feel energized afterward. I got so much done today, including 4 loads of laundry, I haven't done laundry in years!

I was struggling earlier in the week. I was dehydrated and Thursday I had to go to the ER and get a liter and a half of fluids. As usual it made me do a 180. I was exhausted, weak, shaky, foggy headed, flush, dizzy and nauseated. I walked out of there feeling about 90% better. I had a good meal and a good nights sleep and by Friday morning I felt like a new person! I am going to ask my doc if I can come in once a month and get fluids just for good measure. I hate having to get so depleted!

I am looking forward to a great week! I am still doing physical therapy. I do 15 minutes on the sit down bike with a resistance of 4. My therapist does some head and neck therapy. It seems to be helping me slowly build stamina. At the very least it forces me to get up and out of the house to exercise twice a week. Definitely worth it!
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Pause

2011-03-07T02:21:00.000-06:00

I have decided to put this blog on pause for now. I am just re-evaluating my efforts. I didn't want anyone to wonder where I went. I am still helping on http://cure4lupus.org/ and http://cure4fibromyalgia.org/. I am also still available by email at webmaster@cure4lupus.org.

At a loss

2011-02-15T21:24:00.001-06:00

I have no idea what to do next. I am so tired of being tired I could scream. I can't concentrate. I can't force myself to get things done. I can't keep my eyes open. I try so many things exercising, not exercising, exercising a lit or a lot, in the morning or afternoon. I have tried more combinations of pills than I care to think about. I know pain killers will help me sleep better but they make me lethargic, but I'm more lethargic when I am in too much pain to sleep. I can not strike a balance. When I do have a good day I don't know how to repeat it or if I do, the same thing doesn't work. Then maybe I will miss some pills and not realize what is throwing me off. I don't feel like it is possible to find a level field and I don't know how to be ok with being sleepy 24/7. I could live with needing 12 hours of sleep a day or a 2 hour nap in the afternoon. Its the feeling great and productive on 6 hours sleep one day and sleeping 22 hours straight the next.
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Remember

2011-02-09T14:07:00.000-06:00

Like most people I always want instant results when I am trying to lose weight. Fast results are absolutely impossible for me with my medications, pain, etc. I am trying to be ok with not seeing results but knowing that they are slowly happening. I always want to give up and binge when I work so hard with no visible results. I just keep reminding myself that it will be very slow for me and even if I don't lose a pound I will feel better. I also try to remember that when I do have weak moments that doesn't mean I should throw in the towel. It is about slowly changing my lifestyle, moving more, and eating foods that nourish my body rather than fill emotional holes.

Dehydrated

2011-02-07T20:48:00.000-06:00

We had a nice weekend. We went to Des Moines for a birthday party and to work on grandma's computers and new website. I felt pretty good all weekend and really enjoyed myself. I did however miss quite a few pills over the weekend. I was wondering why I fell asleep at 5pm. This morning was ok at first until I laid down to take a nap. My joints started hurting like crazy, and my muscles started twitching. It took me a while to figure it out but I realized I was dehydrated. A couple powerades, catching up on my pills and a good night's sleep and hopefully I will feel better in the morning.
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I don't wanna do it

2011-02-03T22:07:00.001-06:00

I am sick of writing the same post, but I am more sick of feeling the same way everyday. I am tired of sleeping half the day away. I miss out on most of our time with our god son. That time is so important to me! It makes me smile and laugh and happy all day. For the last few weeks I have been back to sleeping till the afternoon like an hour before he goes home. I start off my day disgusted with myself. I try to get into something, get inspired, get motivated, something. Usually I can't keep my eyes open. I eat too much, I sleep too much, I am depressed. I am frustrated that I can't seem to pull up out of this.
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A little off

2011-01-29T16:44:00.001-06:00

The last two days I have felt a little off. I have been tired but can not sleep for the life of me. I was up until 7:30am last night. I am a night owl normally but I am usually asleep by 2-3am. Tonight, the same thing it is 4:30 and I am no closer to sleep than I was at 8pm when I came to bed exhausted. I have also been "uncomfortable". Not straight pain, just not feeling good. I may be having opiate withdrawal. I haven't had any Vicodin in 4 days and I had been on it for the chronic headaches for months.
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No surgery

2011-01-26T14:26:00.000-06:00

I went to the Sinus Specialist yesterday and I am so happy to say I don't have to have surgery, for now anyway. I was more clear than I was a month ago so it wasn't such a sure thing that I needed it or that it would help. I know people who have had it and it helped and those who said it was terrible and didn't even help. He told me to try doing sinus rinses twice a day and see if that takes care of it. He said I would have to do that the rest of my life if I had the surgery anyway. He said some of the meds I take may be stopping the cilia from moving fluid through and removing irritants and bacteria. A reduced immune system can do the same thing. Your sinuses move 1 litre of fluid a day normally. Rinsing the sinuses helps do that job. So, I am hopeful that it will work. It is no fun, but beats the heck out of headaches!

Pushing

2011-01-19T21:54:00.001-06:00

I am having a bad week. I am so sleepy all of the time. I keep getting nauseous and dizzy. I am trying my best to push through, hoping it will make me feel better. But, I just can't, there's just nothing there. And, of course its frustrating and depressing. A day or two I can handle. It is usually the third day I start getting bored and agitated while my body just lays limp.
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Bad night, bad decision.

2011-01-14T13:11:00.000-06:00

About 5am last night I woke up with Vicodin withdrawals. It is kind of like Restless Legs Syndrome in that I have an irresistible urge to move, however it is not limited to my legs, last night it was my entire right side. When I move/shake the affected area it feels better for 30 seconds or so and then the urge starts to build up more and more until I can't take it anymore and I shake it out again. It takes me a while usually to figure out what is going on, especially when I am sleeping. I keep falling asleep in between and can't get my brain together enough to take some Vicodin which takes 1-2 hours, but always cures it. As soon as I take Vicodin my body kicks in to dependence. I only took one dose before bed 2 nights this time. I usually have to ween myself off of it by taking a half dose for 2 nights and a quarter dose for 2 nights, but that is when I have been taking it for several days. I thought I could get away with it after only 2 days, I was wrong. So, the worst part is I couldn't get up for my appointment this morning. I HATE that. It embarrasses me, it makes me feel bad, and it affects my care, but I don't know how to change it. When I am asleep (half asleep) I am not capable of making decisions. My alarm goes off and a lot of times I don't even remember in the morning that I shut it off. Sometimes I just decide its not important. When I get up later I know I made a bad decision but it's too late.

That's a Switch

2011-01-13T21:02:00.001-06:00

Usually my mind is active and running while my body is exhausted and won't keep up. All of you Lupus and Fibro fighters know that debilitating fatigue that words can't describe, when you wake up feeling like you just ran a marathon and it just gets worse as the day goes on. The last few weeks I have been having less and less of that. I think it is mostly due to exercise. The more I do, the more I want to do, and the more I can do. It makes me feel really good. My mind seems clearer, I am in a better mood, and I just want more of that. Tonight I wanted to check out a dance game for the Wii but mentally I am just too sleepy. I do have to get up early anyway. So it's bedtime for me.
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2011-01-13T16:42:00.001-06:00

I am waiting to have my blood drawn for my kidney doc appt. tomorrow. I am feeling really good. I had physical therapy today and my 10 minutes on the step bike gets easier and easier. My ankle is fully healed there is just a tiny hint of bruising left. I am not sleepy but I did sleep until 1pm, about 12 hours. I am trying to decide what to make for dinner. I think I will finally break out my Christmas present, a dance game for the Wii. I haven't had the energy to this point.
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2011-01-13T00:24:00.001-06:00

Today was a good day. Still not getting enough rest but today was better. A 2 hour nap really helped. I did some updates on Cure4Lupus.org, did a little grocery shopping and worked on my New Years Resolution. If you hadn't read, my resolution is to cook more. So, tonight I made spinach artichoke dip, meatballs, and 4 different kinds of muffins. I am going to Des Moines for my grandmother's college graduation and my birthday this weekend. I am bringing a huge mini muffin basket. I have pumpkin, corn, blueberry, peach, chocolate, banana, and lemon poppy seed. Lots of fun, I really enjoy making it and especially sharing it. The dip recipe I had called for way more spinach than I would have liked. It was more like creamed spinach than dip. It was also the first time in my life I have cooked with onions or garlic. I am a picky eater, I do not like strong flavors of any kind. That is one of my reasons for the resolution, trying new things at my own pace. I did not like the dip too much but I can add more sauce to balance the spinach and I think I will like it a lot. The meatballs were good, we made sandwiches with them. I am ready for bed after all that though. I did get an antibiotic to get me through until my appointment with the sinus specialist. I needed it, the headaches are back.
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Discombobulated

2011-01-10T19:15:00.001-06:00

I feel completely out of sorts. I haven't had a good night's sleep in 2 weeks even though I have been spending 12-18 hours a day I bed. I feel exhausted and go to bed but I toss and turn, waking up every 30 minutes or so. At this point I don't know what to do with myself. Should I go to bed, I am sleepy. Should I answer emails, I can't really concentrate. Should I play a game, I don't really feel like it. Should I eat something, I am not hungry and the last thing I need is extra calories. Should I take something, I have tried everything I have over the last few days, nothing helps me sleep or perks me up. My mind is just spinning in circles. I don't know what to do with myself.
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2010-12-27T20:44:00.001-06:00

My ankle is still VERY, VERY bruised and swollen from the sprain. It looks like I broke it in about 10 places. The swelling has started to go down finally. I imagine the bruising will hold on for weeks, maybe even months. It is a little sore still but I can walk on it just fine.

I had to go to the ENT today for a CT scan and a follow-up. My sinuses got better with the antibiotics and steroids but as soon as I was off of them I started being stuffy, having headaches, etc. Sudaphed has kept me fairly clear. My CT showed congestion in the top of my nose and right cheek. She said there should be nothing there, that it was not draining and that is causing my issues including headaches. She said they could try more antibiotics but they are iffy to work and with my immune system the longer we wait the more dangerous it can get. Also even if they did work it would come back the next time I got an infection which will be 3-4 times a year. I never really heal in between. So, she said I likely needed surgery, and referred me to the "sinus specialist". I am terrified of surgery but I will suck it up if I can get rid of these ridiculous headaches! I had a major one just today. I am so over it!
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Sad day!!

2010-12-11T23:06:00.001-06:00

Today was supposed to be the day my 68 year old grandmother graduated with her masters degree. We were also to have our family Christmas. We were all so excited! Matt and I worked all week to prepare for this as well as a birthday party last night. Shopping, wrapping, cooking, sewing, baking, etc. I made cookies and mints in the shape of graduation hats. I know the rest of my family was preparing as well! We all could not wait to celebrate her accomplishment! She is the leader of our family and has shown all of us so much love, inspiration and encouragement. Many people were in from out of town, and several of us were to drive from Omaha to Des Moines. Last night we were told my uncle was in the hospital, the party was to be at their house. Also, we woke up this morning to a blizzard. We were unable to travel and the ceremony was cancelled. We are all so bummed! She worked so hard and we all were looking so forward to today! We will do our best to get together in smaller groups, and wait for the ceremony to be rescheduled, but it won't be the same. My uncle did make it home today and will be ok. Matt and I took the opportunity to rest up, so we can start preparing for the rest of our holiday plans. I really needed a day in bed, I have been pushing myself too hard.
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Doing better

2010-12-07T03:28:00.001-06:00

Friday I went to the Ear, Nose, and Throat specialist. She said my ear was still looking rough. My nose was also pretty inflamed and irritated. Since I get these nose sores, that started this whole thing, pretty often, she said I may have a chronic/recurrent nasal condition. She put me on a steroid dose pack and ordered a CT scan of my sinuses. I go back in 2 weeks. Since then I have started to feel better. The extra steroids pretty much guarantee that. The extra energy is really coming in handy too! I have been getting shopping, crafting, decorating, and baking done. Well certainly not done, but plugin away. I also got the Cure4Lupus.org and Cure4Fibromyalgia.org December newsletters out over the weekend. We have been quite busy. November was slow but December has picked up again. We have some extra help in the office now as well. Fells great to be going in the right direction again!
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Smells

2010-12-01T20:35:00.000-06:00

I get so sensitive to smells sometimes. Most of the time I have a dull sense of smell. However, there are times when I am sick, nauseous or on high doses of Prednisone when I smell absolutely everything and it grosses be out constantly. Smells will get "stuck" in my nose for days after its gone. It's a weird little thing. It is annoying for the people around me because I am constantly like "what are you cooking?, what are you eating?, get that away from me?, do you smell that?, that's grossing me out!". I don't want to eat, my poor husband will make me a meal, I complain about the smell and take 3 bites and ask him to not only take my plate away but to eat his dinner in the other room. It is terrible, I really don't know how he puts up with me sometimes! Thankfully most of the time I can't smell much at all.
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Not much change

2010-12-01T19:29:00.001-06:00

It has been 3 days on antibiotics and I am still fighting fevers, chills, body aches, and headaches. I was really hoping to feel better by now. Time is ticking down for the holidays. I have had a few good hours here and there. I am thankful for that!
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Grounded

2010-11-29T21:11:00.001-06:00

I often feel grounded when I have a bad day. You know like a bird with clipped wings. Sometimes when I am down I just need the rest and its not preferred but I can take it easy without much trouble. But, sometimes I really struggle with it. I can't help but think about all the things I wish I could do. Tonight is definitely one of those nights. I went back to the doctor today and not only do I have a sinus infection, but I also have an ear infection. I also started having fevers today. So, even though I have a ton to do, I figured I needed to rest away the fever. Hopefully some tylenol and antibiotics and I can make up for the lost time. I am also hoping this has been the cause of my headaches all along. Is a headache free December too much to hope for?
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Another mixed bag

2010-11-28T21:08:00.001-06:00

I had a great/terrible holiday weekend. Most of it was wonderful! Filled with family, fun, food, a princess' 1st birthday, and joy! Unfortunately it was also filled with headaches, dizziness, powerful drugs, and even a mini breakdown. I actually barely remember big chunks of it. The drugs have really kept me out of it. Last night I realized that I hadn't been taking my regular meds right for days. I had missed as many as 3 days in a row on some of them. One in particular was Paxil. You absolutely can NOT stop taking that suddenly. You can have all kinds of physical and mental symptoms. I get really dizzy every time my head moves even a tiny bit. I also get way over emotional. Everything seems like a WAY bigger deal than it is. I once screamed at my radio because it was playing a song I didn't like. I then burst into tears thinking I was losing my mind. I got my meds straightened out and now I am just back to headaches. I guess I will take it.
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Pecan pie

2010-11-24T23:40:00.001-06:00

I Love pecan pie. When I was a little girl my great grandfather would come visit from Savanna, GA and he always brought us pecans. In 2003 my husband and I cooked our first thanksgiving dinner. It was just the two of us and we cooked enough for about a dozen people. I made a pecan pie for the first time. It was perfect! At least once, sometimes 2-3 times every year since, I have tried to make pecan pie and failed miserably! It NEVER sets up. It looks perfect but when you cut into it, it runs all over the place. The couple of times it was set enough to even take a bite of, it tasted terrible. One year it was salty, another I used cheap bourbon and that is all you could taste. You could smell that pie across the room. It was just a disaster, but I love it so much that I keep trying. Well, tonight not only did I finally do it, but I know what I have been doing wrong. That first time I made the crust from scratch. Every other time I used a pre-cooked one. Tonight I used a store bought crust but it had to be cooked, so it was already hot when I poured the filling in. Worked perfectly! I spent the rest of the day getting as much rest as possible so that tomorrow I have some energy. I have been battling headaches all day again. Hoping they aren't too bad tomorrow!
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Switch

2010-11-23T22:20:00.001-06:00

My headache has been pretty mild the last few days, until this afternoon when it decided to move full on to the right side of my head. Once again it started in my face, mostly my cheek and teeth, before progressing to a full on migraine. I took an Imitrex and gave the Fioricet a try. I layed there miserable for about 30 minutes, but then the headache started to melt away. I fell right to sleep and 2 hours later I woke up groggy and totally headache free. The grogginess lasted about an hour. That was 5 hours ago and the headache is back. I will try the Fiorcet again. My doc did call back with a neurologist appointment, but I can't get in until Jan. 3rd.
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Ho, Ho, Ho

2010-11-23T00:05:00.000-06:00

I have been having the best time getting ready for the holidays. My favorite part is planning. I am one of those weird people who love organizing and making lists and that sort of thing. I am sewing most every night lately. I enjoy it a lot! Tonight I made pillows. I have also been working on doll clothes. I am preparing to make pies for Thanksgiving. I am also responsible for the mashed potatoes (my specialty). As soon as we get done with Thanksgiving we have a birthday cake to make for a 1 year old Princess. We are excited about how it is going to turn out! After this week, I have 2 weeks to finish presents that have to be mailed, 10 varieties of cookies, and yet another birthday cake. My grandmother, 68, is also getting her Master's Degree Dec. 11th, I have special cookie and candy molds for the occasion. I am so proud of her, I can't even begin to express it in words!! Of course after all that is the big event. I am so excited! I LOVE Christmas, the whole season really. It's all about friends and family for me. I love nothing more than an excuse to get together. I also love preparing, thinking about what I want to give and how happy the receiver will be. I make a lot of my gifts which is fun and therapeutic for me. The whole thing just makes me happy for months, but it does wear me out!

Good News, Bad News

2010-11-19T17:10:00.001-06:00

Good News - My vision has not changed, my optic nerve is not swollen, and my pseudotumor is still under control. I don't have to increase my diuretic, and I don't have to worry about losing my vision.

Bad News - I still don't know what is causing my headaches, and no solution to getting rid of them. The headaches are now in both sides of my head. Right this moment I feel like I was punched in both sides of my jaw. I got a referral to a Neurologist, it is the next step. I also haven't been to physical therapy for a while. I am going to go back and see if they can do anything. They have helped headaches in the past, but ones that emanated from my neck.
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Possible Answer

2010-11-18T15:51:00.000-06:00

I went to my GP yesterday and she suspects my Pseudotumor Cerebri is the cause of my relentless headaches. It has been well controlled for a couple years now, however a few months ago I did reduce my med (diuretic) because I was getting too dehydrated. I had considered it as a possible cause, however because the headache was only in one side of my head and I had no whosing sound in my ear like in the past. The longer it has gone on though, the more likely Pseudotumor seemed to be the cause. No migraine treatment was working, longer than a few hours anyway. Also, the last few days I have been getting some random pains in the other side of my head. So, my doctor took a look in my eyes, and as she said, she is not a neuro-opthamologist, and I wasn't dilated, but she did think she saw some edema. It just so happens my 3 month check up at the neuro-opthamologist is tomorrow. She will be able to tell me for sure and treat it properly. My GP did give me some more meds to try for the meantime. One of the things she gave me is a needle free injection of Imitrex. It is so cool. You use it just like a shot but there is no actual needle, it uses nitrogen gas to inject it into your skin and fat. What fantastic technology, think of the benefit to diabetics, and others who have to give themselves injections!

At a total loss

2010-11-15T12:34:00.000-06:00

I am at the end of my rope with these headaches. It has now been 7 days of near constant migraines. I have tried everything, ice, rest, Sudafed, tylenol, Vicodin, Percocet, Imitrex, Flexeril, they even gave me Reglan and Dilaudid at the ER yesterday and no dice. Some things make it better for a while but it always comes back within a few hours. At the ER yesterday they said the goal was to get me a good nights sleep, that usually is best for a vascular headache. The Dilaudid helped with the pain and made me sleepy, but by the time I got home it had worn off and my headache was back full force. I was up for hours, miserable. I finally got to sleep and for the 7th morning in a row woke up with a raging headache. I called my doctor and the earliest they can get me in is Wednesday. I can't take another day of uselessness. It is so hard to concentrate on what I am doing when my head feels like there are spikes in it. I have energy and a million things I want to do, but I feel sidelined.

Internet diagnosis

2010-11-12T19:03:00.001-06:00

My husband bugged me all day about going to the doctor about this "sinus infection". This evening he said "You have had a headache for 4 days, you need to go to the doctor.". That made me think twice. As it was Friday after 5, I took to the internet to find out when to go to the ER with a headache. I found out about cluster headaches. I am almost positive this is what is going on. The headaches are only on the left side, like a spike in the top of my head, in my face, eased with Imitrex, and I have many, many headaches over a week or so, and then none for several weeks. As with my Raynauds, I think the drop over the summer in Cozaar (calcium channel blocker) spurred this on. Of course I will go to my doctor for a real diagnosis before changing my meds!
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Make it stop!

2010-11-12T16:11:00.001-06:00

I am so frustrated right now! It makes me so mad that it is always something. I just can't get a break. I am doing so well building energy and stamina, but I have a sinus infection kicking my butt. And, it can't just be a simple sinus infection, it has to give me migraines. It is impossible to focus with a migraine. Then I take pills that make me tired and give me excruciating abdominal cramps. I am just sick of being on this ride. I feel like a broken record.
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Sinuses

2010-11-11T16:10:00.000-06:00

I have been very energetic the last two days. I have been taking a lot of Sudafed and that always gets me going. It helps for about 3 hours and then the intense facial pain and severe headache come back. It is so bad I have had to take Vicodin to sleep, after avoiding it for so long. So, of course, constipation is a problem. I have several mouth sores and the nose sores are still bad. My teeth are also sore, especially when eating. I am sure it is a sinus infection. I just hope it clears up soon. In the meantime I am just taking advantage of the energy. I have been updating Cure4Lupus.org all day.

Downhill

2010-11-09T21:48:00.001-06:00

Since this morning I have really gone downhill. My migraine refused to get better no matter what I threw at it, Imitrex, tylenol, muscle relaxers, tramadol, vicodin and sudafed. The sudafed helped some so I took another dose and I realize it is in my sinuses. The entire left side of my head hurts but my face is by far the worst. I am achy too. No fever and I had a flu shot about a month ago so that shouldn't be it. I have had nose sores for weeks, it probably got bacteria up into my sinuses. No biggie just a bummer.
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Girl's Weekend

2010-11-09T11:10:00.000-06:00

This weekend was the 5th annual Teed family girl's weekend. We went to Galena, IL. It is a quaint little town with lots of shopping. We also went to the chocolate and champagne event. What could be better then a chocolate buffet? We had a blast! I did very well. I had my new cane that folds out to a seat. Just knowing I had it helped a ton! I wasn't thinking about where the closest bench was, could I make it there, etc. I walked all day Saturday and was certainly tired but I made it and I didn't feel terrible. Everyone was tired by then. I had very little pain. About half way through the day, my low back hurt when I was walking but as soon as I sat it was fine. I was so proud that I made it through the whole weekend without Vicodin! I had a terrible time sleeping there. I don't know if it was the excitement, the intense conversations or what but I only got 4-5 hours of sleep each night. On the way home I was so tired I felt drunk. I went straight to bed when I got home, and I spent most of yesterday in bed as well, just to get plenty of rest. I woke up this morning with my 3rd migraine in a week, don't know what that is about. Anyway, I highly recommend you do a girl's weekend! Gather your friends, family or co-workers and find something fun to do. It is fun and a great way to connect with other women!

Costochondritis

2010-11-03T20:35:00.001-05:00

For the last three days I have been getting pains in my chest when I lay on my side. It felt like my heart until a few minutes ago when I pushed on my chest and realized it was very tender right down the middle. I am thinking it may be costrochondritis. It's common with fibromyalgia. It's no big deal just pain in the sternum that can feel like a heart attack. It's not that bad right now. I have also noticed that reducing my Atenalol has reduced my Raynaud's. My hands are still a little hard to keep warm, but they haven't been painful at all. My dehydration has also been better. I think its a combination of the reduction in lasix and the reduction in temperature. It is so nice not to get weak and shaky everyday! I have enjoyed the energy by sewing and putting out both the Cure4Lupus.org and Cure4Fibromyalgia.org newsletters. It feels good to accomplish!
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Diversify

2010-11-01T00:52:00.001-05:00

I am doing well. Still slowly building strength and stamina. I am doing so well in fact that after this week, I will reduce to one physical therapy appointment a week. My neck and back are sooo much less tight. I have also been trying to do different things like sewing and baking to keep from always using the same muscles. It has also given me more mental energy, stimulating my creativity. I am getting ready for Christmas making doll clothes for my niece. It has been so much fun! We had a low key but good holiday. I am just looking forward to another good week!
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What it's all about

2010-10-22T11:40:00.000-05:00

We had a fantastic time in Denver, but we are glad to be home. Cure4Lupus.org was busier this weekend than any other weekend, ever. We have been working very hard to keep up! It's definetly a labor of love though. We feel so blessed to be able to give in this way! It is why I get out of bed in the morning. I spent several years too depressed to do much of anything. 4 years ago I started Cure4Lupus.org and it changed my life. I also now spend more time with my family and that is the real gift. There is nothing in this world that is more important!

Drag

2010-10-16T19:16:00.000-05:00

Havin a great time in Denver. We sat in a pub and watched the Iowa football game and that hurt me pretty good. I am trying my best but everything hurts. I had to breakdown and take Vicodin which is helping with the pain but making the fatigue worse. I hate always being a drag on everyone. My family is always so caring and accommodating but it just makes me feel bad that I can't keep up.
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Denver

2010-10-14T18:22:00.000-05:00

Things are going well. We have been busy with the websites, busy with family and not feeling too bad. I did have a migraine on Tuesday, but my physical therapy appointment took care of that. I have been trying to lay low and conserve energy because we are preparing to head to Denver for the weekend. We are going to the Jets-Broncos game. We are very excited. Neither of us has been to Denver before. Should be lots of fun!

The great pumpkin

2010-10-09T22:19:00.001-05:00

We had a wonderful day! We went out to a pumpkin patch with family. I have never done that before. The kids had a blast and were adorable as heck! I did a TON of walking. I did great! I took lots of breaks, and it wasn't bad at all. My hip got sore a few times, but my energy level stayed pretty decent all day. I am of course toasted now, and I don't expect to get anything done tomorrow, but I am hopeful I'll be able to at least get out of bed. If not, that is ok too, I am already doing better than normal. Plus it was well worth it! Those times are what it's all about! That is one gift I have gotten from Lupus and Fibromyalgia. When you have limited energy and have to carefully choose how to spend it, you learn what is most important to you really quickly! I just don't deal with drama, trivial things, or things I don't like. I wish everyone could have that kind of clarity and freedom!
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Hopeful

2010-10-01T19:55:00.001-05:00

I am looking forward to my rheumatology appointment on Monday. So many things are going better, sleep, stamina, strength, but there are also a few things going worse. I am having hot flashes out of no where. I still battle dehydration every single day. The most pressing and newest issue is knee and finger pain and swelling. The fingers have been so bad that cutting food is often too much to bear. Washing my hair feels like I have razor blades in my hair. I have literally checked my hands for bleeding. As usual I fear a major Lupus flare, but it never is. I just hope I don't hear "this is just part of the progression of your disease". Basically that means there is nothing you can do and that is terrible to hear, true or not.
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Building

2010-09-19T23:21:00.000-05:00

Things have been going pretty well lately. My fibromyalgia has been flaring pretty good, but that is because I am working on getting in better shape. Between my physical therapy appointments, doing the exercises they gave me, and just trying to get out and be more active, I am starting to build some muscle tone and stamina. It is a very slow and painful process. Fibro, similar to Lupus fights you all the way. The wear and tear you get from exercising not only doesn't heal properly, but it can trigger additional spasms, tightening, and pain. So you have to take baby steps. It's really hard to balance doing enough to improve without overdoing and setting yourself back. That is exactly what the Physical Therapy is helping me with. I would recommend it to anyone who has gotten deconditioned from Lupus or fibro! You have to be ready to work for it, and patient. The way I look at it is at least the pain I am feeling right now has a good outcome. One of the ways my fibro has been flaring that isn't helpful is with Irritable Bowel Syndrome. I have really, really, terrible cramps and have only been going to the bathroom about every 3-4 days. My GI doc told me to use Dulcolax every day. I started yesterday and so far nothing is different. It is the same stuff they give you for prep for a colonoscopy, GoLytely. It is a much smaller dose, and it dissolves in water. I remember when I used it for prep the more you drank the more it started to taste and it got to be miserable and almost impossible to get down, but at this dose I don't even taste it. I am slightly concerned it will dehydrate me further but I will be vigilant against that. I am hoping it will just balance me out like the bottle claims.

Busy Fall

2010-09-15T13:49:00.000-05:00

I have been feeling pretty decent lately. I have been working on building my stamina and strength, very slowly! Today, however, I woke up in major pain, all over my body. I didn't do anything particularly strenuous that I can think of. More than half of the joints and muscles in my body hurt. I will just take it easy today and hope it gets better. We are getting ready for the Iowa Lupus Walk. This will be our fourth year attending this walk. I actually was the planning committee chair the first year and the chapter president the second. We hope to attend at least one other walk this season, but we haven't really figured out which one. The closest ones are all happening within a week of the Iowa walk so we will have to travel some. Which is fine, it's just a question of when and where. We have been quite busy lately, fall Lupus walk season and all. Our customized walk design has been very popular. Everyone loves having a t-shirt they can put their team name on without having to order 25 shirts or pay a ton, or wait weeks to get it. I love it when we get a big response to a new idea!

Gotta Love It

2010-09-06T19:41:00.000-05:00

I LOVE, LOVE, LOVE a good family gathering! We had a surprise birthday party for my aunt last night. It was a ton of fun. Lots of family came from Des Moines, Kansas City, Chicago, Arkansas, and Denver. We all wore black and white. This morning we got together again for breakfast. There is just nothing better if you ask me! Catching up with everybody, and playing with all the babies. I took it very easy on Saturday, I was quite sore from Physical Therapy on Friday. Today I am also very tired and taking it very easy. In fact I think I will go ahead and go to bed.

PT Going Well!

2010-09-04T17:09:00.000-05:00

At my physical therapy appointment yesterday I did a new exercise for my shoulders and today my upper arms, chest, shoulders, and upper back are quite sore. It's a good sore though. It's nice to have pain that comes with benefit for once. It motivates me. I just have to hold myself back because my inclination is always to overdo it and next thing I know I am shutting down completely. That is the reason I need a therapist, to tell me when to push and when to rest. The therapy has been going very well. My neck and shoulders are so much less tight and painful. I didn't realize how bad they were before. Now when they hurt it is abnormal. I am not sure however how long this will go on. Originally it was supposed to be 8 weeks or so and it has been that long, but I am no where near ready to stop. I feel like I am just getting started.

Great Doctors

2010-09-01T21:27:00.000-05:00

I can not say enough good things about my current doctors. They are mostly all with the University of Nebraska Medical Center. I especially love my internist. She always makes sure we cover everything, never do I not mention something because I feel rushed. She is happy to consult with my other docs when needed. And they all factor in my ideas and expertise on my own body. As an example, last week when I was dehydrated my labs didn't really show it, but they listened to me and sure enough a little bit of fluids was all I needed. I am very thankful to have such a great team!
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Fill me up

2010-08-27T22:07:00.001-05:00

I think they need a quick lube at the ER. I can just walk in, tell the doctor I am about a quart and a half low and he just fills me up. I feel so much better! I have been so weak and shaky, nauseous, headaches, just a mess for almost 2 weeks. Today I realized for sure that I was dehydrated. A liter and a half of IV fluids later, I feel like a different person. I couldn't walk down my flight of stairs without stopping to rest. I just now walked the 100 yards from the garage and up the stairs. It wasn't easy, it never is, but I didn't have to rest 4 times, and catch my breath for 15 minutes afterward. I feel back to my old sick self, LOL. I am going to talk to my doctor on Monday about backing down my Lasix. I have to take it twice a day to avoid my Psuedotumor Cerebri from acting up, but maybe I can reduce the dosage just a bit to keep me from getting so dehydrated. I am also going to have to sew a water bottle into all of my outfits.

Katrina

2010-08-24T19:59:00.000-05:00

I am sobbing uncontrollably right now. I am devastated watching Dateline's 5 years after Katrina. I am outraged as I was then but it's far more personal now. I watch the very young, elderly and sick people are the ones that didn't make it and I realize that I would never have made it. It was people like me that died of neglect and inaction. If it can happen to them it can happen to me. It is scaring the life out of me! It terrifies me that I am so close to the edge. A few days without medicine would do me in. Take away food, water, air conditioning, sleep, or clean anything and it wouldn't take that long. People take health and life for granted so much! It just really reminds you that life is precious and we have to hold onto and cherish every moment! That, and, to carry a weeks worth of meds wherever I go.
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So over it

2010-08-20T16:59:00.001-05:00

I am really battling depression today. I just can't take this anymore, but I have no choice, what am I gonna do? It is just constantly something. It never ends. I feel bad more often then I don't. I am so over it. I need it to stop, but it won't. It's like the everedy bunny. I am feeling desperate for relief. I am thankful to have this outlet when I am feeling this way! For two straight hours last night I had doubling over abdominal pain. Today I am back to nauseous and bloated. It is exasperating! I just want to be normal. I want people not to ask me how I am feeling every 5 minutes. I want to not have to say terrible most of the time. I want to not have to spend $55 to rent a scooter just to go to the fair that I will have to leave after a couple hours because the sun is killing me and I am exhausted. I don't want to complain any more. I want to not have to plan everything I do around pills, naps, and pain. I want to not have Lupus or Fibromyalgia, and that is a useless desire.
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Dangerous

2010-08-18T14:09:00.000-05:00

When Michael Jackson died I wrote that if he had systemic Lupus I could totally see how he could "accidentally kill himself". The same thing happened with Heath Ledger, Anna Nicole Smith and other celebrities recently. I am not judging or justifying them or their possible drug abuse. I am just saying that if they had medical issues I understand how you can be so desperate for pain relief and/or sleep that you can go too far. It is a very dangerous, sometimes fine line. With my sudden inability to take Flexeril and the resulting insomnia, I have been desperate for rest. Last night I did something I would normally never do and always tell others never to do. I took my husband's Baclofen. It knocked me on my butt. I did get rest but it was a little scary. I don't think anything has ever affected me that powerfully. I couldn't think when my phone woke me up, ringing. I had no idea what was going on. I didn't move an inch all night. Today I feel totally hung over and spacey. I really should have waited to talk to my doctor!!!
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Really frustrated

2010-08-16T19:12:00.001-05:00

I am exasperated today. I just can't seem to get everything going in the right direction at once. If I eat well I can't sleep, if I sleep well I end up over exerting myself, if I don't do that something stressful happens. The latest frustration is that I have been taking an extra Flexeril to help me sleep for about a month now. It was going well until I started having ridiculous muscle spasms. I am talking half my chest vibrating for 10 minutes. It woke me up constantly and started happening during the day. I figured out it was the Flexeril. So the spasms have stopped but I am back to having trouble sleeping. I swear it's like my body is out to get me. Oh wait, that's kinda the definition of Lupus. It is a strange feeling!
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Getting back to normal

2010-08-15T17:33:00.000-05:00

Things have been going well. I have been spending a lot of time on the websites, putting out our August newsletter. I have still been quite tired. I try my best to push through, but it just consumes me sometimes. I have been mostly feeling good otherwise. The only thing I really have to complain about it that my left middle finger is insanely painful. It's not swollen, red or bruised but touching it even very lightly causes intense pain. It's kinda weird. It's been like 3 days since it started. My husband is finally back to normal after his terrible tooth abscess so we are getting caught up on household chores and such. We are looking forward to going to the Iowa State Fair next weekend, that's always fun.

Much Better

2010-08-11T08:54:00.000-05:00

My nap yesterday ended up being 4 hours and not very restful. I woke up achy and even more frustrated. A couple weeks ago I got a new face mask for my CPAP machine for sleep apnea. It is supposed to be exactly the same but it just didn't fit quite right. I switched back to the old mask last night and I woke up at 8am this morning feeling rested, what a difference. I will probably still need a nap, but at least I won't sleep all day.

So Annoying

2010-08-10T14:25:00.000-05:00

I am so frustrated right now. I have only been up for 2 hours. I slept for 9 hours and I can't keep my eyes open. This is how it is most days. Lately it has been less often though which only makes it more annoying because I remember what it is like to not feel this way. Every muscle in my body feels extremely heavy. I have trouble concentrating and if I try to push through, it just gets worse. I have no choice but to take a nap. I usually sleep 2-3 hours. When I wake up I don't feel ready to get up, but once I do I feel better for the rest of the night. I then have trouble going to sleep at night. Frustrating!

The worst doctor in the world

2010-08-03T21:40:00.000-05:00

So I was all excited today because I finally went to the Podiatrist. I have had these rash and nail problems on and off for 10 years. I never deal with it because I have so many other issues to focus on. The first thing the doctor did was raise the chair 5 feet in the air. He glanced at my foot and said it was fungal. He said I have 3 options 1. Lamasil, a pill every day for 6-8 months with possible liver damage, 2. Laser, not covered by insurance, $350 x 3 treatments, or 3. topical creams twice a day religiously gives me a 6-8% chance of healing and it will probably come back. I said I am used to taking pills. He then opens my chart for the first time and as everyone does says WHOA! He said I would have to stick needles in his eyes to make him give me Lamasil. So as I am trying to wrap my mind around that he starts in about antioxidants, and fresh food, and berries, and supplements, and this super berry juice, and how he takes it twice a day and he had a patient with RA take it and got off her prednisone and other meds, and his father-in-law was off his diabetic meds, and in Lupus your immune system is fighting against you and this will help your body heal itself, and it might make the rash go away if you get your immune system built up, and it's totally safe but if it makes you sick stop taking it. I was 5 feet in the air, completely captive. He went on for literally 30 minutes. I HATE those kinds of things but if he had just mentioned it, fine, but I felt like I was at an Amway meeting. I can't even believe how inappropriate it was. I was livid! I was in such shock I didn't even know what to do.

Delusional

2010-08-02T09:35:00.001-05:00

10 hours, 2 shots of morphine, 4 shots of novacaine, and 1 extracted tooth later my poor husband is feeling some relief. I am delirious. Headed for bed!
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My love

2010-08-02T03:32:00.001-05:00

After 11 years with my husband I have never seen him this sick. As a matter of fact I haven't seen anyone besides myself this sick. We are in the ER for the second time today. He has had a fever for a week. He got antibiotics Friday and the fevers eased but he started have terrible jaw pain. He hasn't slept more than a couple hours in days. He hasn't eaten much all week. This morning the pain got so bad we had to come to the ER. He got some Percocet and on the way home threw them up. He has been throwing up everything since for over 12 hours. I have been that sick and ended up on the floor in my own vomit unable to even ask for help. He had to pretty much carry me to the hospital. I knew I couldn't do the same for him so I made him come back. He is on methotrexate for rheumatoid arthritis so it's just as dangerous for him as it would be for me. They think it is an abscess in his jaw but are not positive. Meanwhile I am just doing my best to take care of myself so I don't end up next to him.
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Poor Guy

2010-07-31T17:29:00.000-05:00

My husband has been miserable all week. He has another terrible tooth infection, fevers and fatigue. I feel so bad for him! When he is sick I can't motivate myself to do anything. All I want to do is lay in bed with him. Of course that makes me achy and bored. I over eat and get depressed. I hope he feels better soon!

Announcing Cure4Fibromyalgia.org

2010-07-26T13:39:00.000-05:00

Announcing the brand new Cure4Fibromyalgia.org!

As many as 25% of Lupus fighters also fight Fibromyalgia. We are bringing our format and perspective to the Fibromyalgia community. On the new website you can find:
What is Fibromyalgia
Fibromyalgia Symptoms
Fibromyalgia Treatments
Fibromyalgia Events
Fibromyalgia Support Groups
And much more!

The site is still a work in progress and we need your help. If you know of Fibro events, support groups, or other feedback, email us at Fibro@Cure4Fibromyalgia.org.

We are also looking for Fibromyalgia stories, poems, and articles.

2010-07-23T19:46:00.002-05:00

It has been a good week. I have been sleeping better and have had more energy than normal. I over did it on Monday and Tuesday so my back and thighs hurt a lot yesterday, but are much better today. The shingles haven't been a factor at all. I am so relieved, and now I won't be so paranoid about getting them again. I had several doctors visits this week. I always do this, I push everything off for months and then have a bunch of appointments all together. Nothing really to report except my Psuedotumor Cerebri has gotten a little better. I have been having a lot of headaches lately so it pretty much rules out the Psuedotumor as a cause. It was my third week of physical therapy and that is going well. I have started on the exercise bike. So far I am only at 5 minutes, but it has been easy. I am so excited to launch the new website I have been working on the last few months. Announcement emails will be going out starting Sunday. If you are not on our newsletter list you can sign up here: http://cure4lupus.org/phplist/?p=subscribe&id=6

My worst nightmare

2010-07-17T16:27:00.001-05:00

Today my worst nightmare came true but so far it hasn't been as bad as I feared. I have shingles. I had them 3 years ago and it was a month of the worst pain of my life despite 8 Percocet a day. That was followed by several months of just bad pain called post herpetic neuralgia. It was the worst 6 months of my life. I have been paranoid I would get them again ever since. Three days ago I started getting pain in my back. I thought I just strained a muscle or something. Yesterday the same area started to itch and a rash broke out. Last night I started to suspect shingles, but I thought I was being paranoid. This morning the itching and pain made me decide to go to the ER, because early treatment with anti-virals is important to prevent post herpetic neuralgia. Sure enough the doc confirmed my fears. So far the pain is not severe though so I hope its just a mild case that will come and go quickly!
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Good News/Bad News

2010-07-15T17:16:00.003-05:00

I got up at 7am this morning to have an upper endoscopy. As previously stated my doctor expected to find a hiatal hernia, and one or more ulcers based on my symptoms. He even told me he would likely need to do surgery. Well, today he found no acid reflux, no ulcers, nothing but some irritation. He took a biopsy to check for the bacteria that causes ulcers. He told me that if that is negative my symptoms are probably just a chemical reaction between my medications that is happening in my stomach. I was very shocked. I asked him about diet and he completely changed his tune, said it wasn't a problem. So good news I don't have damage, and I can eat what I want, bad news, nothing can be done about the symptoms.

Perfect Day

2010-07-12T22:53:00.002-05:00

Today was the perfect day, the day I wish I could have 5+ days a week. It wasn't particularly exciting, just normal. I got up at 9am and didn't have to take a nap for the first time in months. I worked on the July Newsletter pretty much all day. I took a break to go grocery shopping during which I was able to walk. I also took all 7 doses of pills, ate a balanced, low calorie diet, and I feel fairly good. I wish so much that could be my normal!! In the meantime, I will enjoy it while it lasts!

Going well

2010-07-12T00:24:00.001-05:00

My new, no acid, stomach preserving diet is going pretty well. I haven't had too much trouble yet other than just trying to find alternatives. I did drink an orange powerade yesterday because I was feeling urgently dehydrated. I think the hardest part will be the meds. I have to add to my 5 doses of pills 2 doses of carafate. It has to be taken no less than 2 hours after or 3 hours before taking any other pills. That has been hard to figure out and get used to. Overall I feel positive about the whole thing, like it will help my digestive system as well as help me be healthier and lose weight. I did have to google to figure out how I was going to get vitamin C without citrus. It's not too hard though strawberries, kiwi, and cantaloupe are all good sources an I love all 3.
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Ouch

2010-07-11T16:46:00.001-05:00

Raging headache times 36 hours
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My Life As I Knew It

2010-07-10T10:06:00.002-05:00

I saw a gastrointestinal doctor yesterday. I have been having a lot of severe lower abdominal cramps and I am still having acid reflux despite 3 different meds to stop it. I had seen a GI specialist 3 years ago in Iowa, but this was the first time I saw this particular doctor. I really liked him, he was aggressive about treating my problems. I like a doctor that recognizes that what might be a nuisance to one person for me is a big problem. The scary part is that my life as I knew it is over. He is doing an endoscopy to check for ulcers. He said he thinks I will need surgery but I have to lose weight first. He also said I can not ever have alcohol, carbonated beverages, caffeine, spicy food, tomatoes, mint, chocolate, or citrus fruit again, ever. I have always known that I shouldn't eat that stuff but having a doctor look you in the eye and say you can not do it is a whole different thing. There was no room for trying to do better. He said you have had your last drink of alcohol, spicy food, etc. The medications I have to be on are just too damaging to my digestive system, I can not afford to do any more damage with food. He also increased my Nexium and Carafate. I am also to talk to my other doctors to re-evaluate my other meds. I am taking it pretty well. I am trying not to think about never having things and focusing on today. I like having something I can do to improve my pain and long term damage. It is also helping me start to look at food as medicine not entertainment.

Hip Dysplasia

2010-07-07T18:45:00.002-05:00

I forgot to mention earlier that off the cuff I mentioned to my physical therapist that when I was born my hips were dislocated known as hip dysplasia. He said that not only is it likely causing some of my hip, back and knee pain, but it is also a possible trigger for Fibromyalgia. When I was born my mother was told I may never walk without braces on my legs, although I never used braces. I have however been waiting for the other shoe to drop because they did say it could cause future problems. I have always been more comfortable with my legs spread the way they were in the harness that treated the problem when I was a baby. The therapist seems to think however that he can strengthen and balance the muscles and it won't be as bad.

Physical Therapy

2010-07-07T12:53:00.002-05:00

Today was my first physical therapy appointment. My therapist has been doing this program for 8 years. He made no guarantees but many of his patient get relief. Obviously it is not a cure, but it can reduce symptoms. The beginning will be identifying trigger points and treating them with deep pressure. Trigger points are different from Fibromyalgia tender points. Trigger points are small contracting knots in the muscles. My therapist found several today. In my hip flexors, the left one being way worse. I have had several doctors push on that area and not know why it hurt. One even sent me for an ultrasound because they thought it might be my ovaries. He did a lot of pushing on it which hurt like crazy but by the time he was done it hurt less than when he started. My range of motion was also better after the pressure. He gave me 1 exercise to strengthen that side. He then moved to my neck where he easily found several trigger points. Some of them, when pushed on sent pain shooting up to my head like a migraine. He said this could ease at least some of my migraines. I am really hopeful that I will get some improvement!

Still recovering

2010-07-06T21:55:00.002-05:00

I am still recovering from my fun week. It has been slow going. I am having a lot of joint pain. My left wrist is swollen up like crazy. I have my first physical therapy appointment in the morning so I am excited about that. My husband has been hurting really bad as well. He had to push me in a wheelchair at the zoo and threw out his back. He has been drugged up and sleeping for the better part of the last 3 days. We haven't even been able to watch our baby cousin. We really miss him! He is sooo much fun! I am going to have to look into getting a motorized scooter because my husband is never going to push me again.

Super Fun Week

2010-07-04T17:23:00.002-05:00

Today I am feeling pretty rough. I hurt all over, pretty bad. This time, however, it was worth it. I had an amazing week! My sister was on vacation and her, my niece and I got a lot of time together. We did crafts, went swimming, and just had a blast. Friday night a bunch of us went to a minor league baseball game and yesterday we went to the zoo and had a BBQ. About 5pm yesterday I crashed. I have been in bed ever since. The only thing that is worrying me a little bit is my creatinine is still 2.4. My doctor told me to lower my blood pressure meds and see if that helps. I still think it is probably dehydration, but maybe I will need IV fluids to get back to normal. Worst case scenario and least likely is that my treatment is failing and this is a flare. I see my nephrologist next week he should be able to figure it out. Until then I am getting lots of rest and lots of fluids.

Lupus defines me

2010-07-02T04:24:00.005-05:00

I heard about a new book today called I Still Dream Big. It is about 17 teenagers who are dealing with chronic illness and refusing to be defined by their disease. I haven't read it yet but I imagine it is inspiring and great. I just was thinking I wish it wasn't a negative thing to define yourself by your disease. I mean if you can put your disease in a nice neat box and carry on normally, that is fantastic, by all means don't let anything stop you! But, they make it seem like if you just want it bad enough and try hard enough you can still do whatever you want to do no matter how you are affected by a disease. That is just not always true. There is nobody more determined, driven or who dreams bigger than I do, but some times the illness rules. Lupus is not the only thing that defines me, but it is a huge part of who I am. Whether I am taking pills, going to the doctor, resting, avoiding sun, avoiding overdoing, etc. Lupus is never far. I have learned to manage it and I don't let it stop me from dreaming big, but what I dream of has changed drastically! I used to dream of going to college, living in a big city, being a mother, being a CEO of a big company, and much more. Those things are not possible for me no matter how hard I try or how badly I want them. I am ok with that, I have come to terms with it and I now dream of making an impact on Lupus awareness and research, helping to raise my nieces and nephews and cousins, and having a fantastic marriage. In the end I am perhaps even happier. Life is what happens when you are busy making plans! Not everyone with a chronic illness has to deal with it 24/7 like I do and great for them! I just wish doctors, advocates, and the public would stop making us feel lazy or attention seeking because we define ourselves, in part, by something that took over our whole life. There comes a point when hiding the tartness of the lemons you have been handed is impossible and you decide to work with it and make lemonade.

Stripped Down

2010-06-30T19:59:00.004-05:00

I have been stripping my life down to the bare essentials for years now. I have very limited energy and strength so I figured that if I could eliminate all non-essential activities that I would be using my limited energy to the greatest purpose. I have been able to do it quite well. I don't do anything I don't find valuable and necessary. I save energy by not walking at the grocery store, having my husband take care of the house and meals, and avoiding anyone or anything that may cause me stress or energy. I set up my world to have everything I need within reach. I spend all of my time sleeping, with family, or working on Cure4Lupus.org. I don't even leave the house but maybe once or twice a week. At first it was great. I was able to put everything I had into the things I love the most. Recently however, I have learned that this is not working for me. It has caused me to get weaker and weaker, more deconditioned, and less available. I am now spending less time doing what I love then I ever was, but now I spend all the rest of my time in bed. I sleep forever, get up achy and tired and 2-3 hours later I want to go back to bed. If I do I don't sleep well because I haven't expended any energy so I wake up feeling just as achy and tired and the cycle progresses. At this point I can't walk up a flight of stairs. I can't stay awake for more than 6 hours, but I can't sleep worth a darn. I hurt and ache 24/7. I am afraid to push myself because I don't want to trigger a flare like I have repeatedly in the past. The good news is I got a call from the physical therapist today. The program is an 8 week program, 2-3 times a week. Just getting out of the house to go to that is a great start! The first couple weeks they just do education and stretching. Then light exercises for a couple weeks and then aerobic exercise for the last weeks. It sounds like EXACTLY what I need. Before I went straight to the aerobic exercise and burnt out in a couple days. I am very hopeful with this program! I will be posting all the things I am learning as well.

Dehydrated Again

2010-06-29T15:24:00.004-05:00

As expected my doctor called and my creatinine jumped up from 1.7 to 2.4. Creatinine builds up in your system when your kidneys aren't fully functioning. I just knew I was dehydrated. It is pretty common for me. A few times a year I get really dehydrated and my creatinine jumps up exactly like that. This is the first time I didn't panic and think it was a major flare. I take a lot of diuretics (water pills). Staying hydrated is a difficult, delicate balance, and summer doesn't help. I have to go back next week and recheck my levels, I am sure it will be back to normal now that I know what I have to do.