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Posted 4/8/2013 7:41 PM (GMT 0)
I was dx with Lupus SLE when I was 17 (now 33). My very first symptoms were minor (joint pain/swelling, slight butterfly rash). I was placed on plaquenil and stayed out of a major flare for about 10 years (occasionally would have joint swelling but it would never linger long). Then I had a BIG ol' kidney flare when I was 28. Was placed on Cellcept. Did well on it. Then my mother was dx with stage 4 lung cancer. After fighting for about 2 yrs she passed away a year and half ago. After she passed I gradually got sicker and sicker....I just finished my 5th infusion tx of Cytoxan and have one more to go. I've never felt so tired of being sick. Between my first kidney flare, the dx/care/death of my mother and my current flare I feel like I haven't been able to take a breath in over 4 years. I just want to feel normal again ( I realize is something I shouldn't hold on to).
I'm finding it hard to deal with new symptoms. My hair has thinned so much I'm thinking of buying a wig. I've become very sensitive to UV rays and being an "outdoorsy" person this is heartbreaking. I have to take a Lupron shot once a month to protect my ovaries from the cytoxan and it gives me CRAZY hot flashes and my skin has broken out like a 13year old. I am so fearful that this treatment I have been enduring for the past 6 months won't get me fully out of this flare. AND now that summer is around the corner, I have such anxiety about the sun. I also feel like this disease and the medications are making me age rapidly. I hate everything about it.
I have always thought of myself as a strong and independent individual but I'm running on low. I realize I need to find some support. My family, friends, doctors are wonderful, but they have know idea how hard this is.
I don't know what I'm looking for, maybe just some stories to relate to? To feel like I'm not so alone in this. Just typing all this out was somewhat therapeutic.
Posted 4/8/2013 8:22 PM (GMT 0)
Sorry for the loss of your mother.

I'm photosensitive and miss my days in the sun too. I've found I can get several extra minutes sometimes an hour outside by wearing sunprotective fabrics.
Posted 4/8/2013 9:11 PM (GMT 0)
Glad you joined us. Getting used to the changes in our lives is a common thread here!
Posted 4/9/2013 2:21 AM (GMT 0)
 

Welcome!!!  This is a wonderful place to ask questions, vent if you have to and not feel like you are all alone.  It has helped me a great deal to share my journey and feel like there are people who do understand what I am going through.  I am a complete outdoor enthusiast and often pay the price for not being sun-protected enough when I go outside.....and I have paid the consequence of those kinds of actions.  They make me feel pretty awful, both physically and emotionally.

Laura

Posted 4/9/2013 5:28 AM (GMT 0)

Hi, Bet17 -

First of all, my sincere condolences on the loss of your mother. I can't even imagine how difficult that must be. For such a tragic event to then be followed by such a severe lupus flare must feel like the someone pulled the rug out from under you, at least, that's how I felt last year when I entered into the most severe (organ-threatening) lupus flare I've had thus far.

Like you, I am in my 30s, but I feel (and look!) like I aged tremendously last year. Maybe it's the flare itself, the immunosupressant therapy and various medications, or the stress of it all. Who can say at this point!?!?!?! 

On the appearance front, I'm pretty much bald at my temples due to lupus and lupus meds, but I also sprouted some noticeably silver hairs during that same time. In December, I started breaking out with horrible cystic acne, which I didn't even have in high school! I've lost about 10 percent of my body mass, and because I don't have the energy to go shopping, all of my clothes fit me poorly so I look/feel dumpy. Sometimes when I see myself in the mirror I can't help but think, the only thing worse than being sick, is looking so sick, except, ironically, several times a week some dummy tells me that I "look great"! LOL!!! Does that happen to you, too? :-)

Like you, I am starting to wonder if I am ever going to come out of this flare and return to "normal," although I am keenly aware that it will be a new kind of "normal" whether I like it or not.

Again, if I may, like you I have always considered myself an extremely strong, capable, independent woman, but I am physically and emotionally exhausted from dealing with this disease, and this particular flare, and I can't even imagine having to go through this again and again during the remainder of my life. In addition, for the past three years this disease has robbed me of my two greatest joys in life: hiking and world travel. I feel like I'm just existing.

Like you said, family, friends, and medical providers are great, but unless they've been through something similar, they just don't understand how hard this disease is.

I'm afraid I don't have any words of wisdom or encouragement for you this evening. I just really related to most of what you wrote in your note, and wanted to express that to you.

I hope and pray that the Cytoxan will be just what your body needed to help control, and then heal from, this latest flare.

My best regards,

Nina

Posted 4/9/2013 8:35 PM (GMT 0)
Hi Nina,
It was so nice to nod my head while reading your post. Especially the comments on appearance and feeling like your just existing. When I first started the cytoxan treatments they were also giving me very high doses of prednisone. My kidneys weren't functioning properly and I was retaining fluid. The Prednisone gave me what they call "moon face" (which I still have). I actually had people at work (on multiple occasions) ask me if I was pregnant. I also have gotten comments that I look like a doll because I have such a round face. Nice.
Before I started the treatment I was very thin too. I've gained about 10 pounds (real pounds not fluid) over the past couple of months and so far have held on to it and thank god my kidneys are working better and the fluid retention is minor (with diuretics). I just hope I continue to get better and hopefully can start decreasing all this toxic medication I will be on.
After the Cytoxan treatment they will be putting me back on Cellcept. My nephrologist voiced to me at my last appointment that he would like me to stay on it indefinitely since this is my second kidney flare!!!! ***! He said we could wean me down to a very low dose but he would feel better with me on it.........I hate it.
Have you ever looked into alternative medicine or dietary changes? I currently only eat fish (occasionallY), mostly vegetarian (I've been eating like this since I was 25). I really try to eat as healthy as possible and I read about the benefits of RAW or vegan diets but I don't know if I have it in me and THEN I get down on myself because what kind of person doesn't change their diet if there is a possibility it might help?
Anyway, I do try to practice gentle yoga and it does help when I am consistent.
What kind of things help you?
Thank you so much for your response. It really made me feel better.
Beth
Posted 4/18/2013 5:02 AM (GMT 0)
Hi, Beth -

I feel badly for having struck up a conversation with you last week, and then basically going silent for over a week! Sorry about that!

After being on medical leave for 6 months, I recently returned to work, and it has been grueling. There aren't many evenings where I have the energy to hope online after dinner, but I do tonight!

Prednisone is a real drag isn't it? I mean, the drug can, literally, save your life, but I find it just wrecks havoc on my entire system (including the weight gain and rounded face you are currently dealing with). When I take prednisone I also get increased facial hair (joy!), acne, and weepy as all heck. 

Coincidentally, I've just, reluctantly, agreed to take a prednisone "blast" for four weeks on top of my CellCept, Plaquinel, and Colchisine. Like you, I despise the idea of having so many meds in my system and I hope that at some point I can coast along on the Plaquinel alone.  

I'm sorry that you're nephrologist wants you to restart a low-dose of CellCept after you complete your Cytoxan treatments. Taking CellCept was a really big and scary step for me, as I imagine it was for you. (Not to mention your Cytoxan treatments!!!) I have heard that CellCept is especially good for lupus nephrisits patients, and my hope for you is that the lowest dose possible will yeild the least amount of side-effects and risks.

I thought of you the other day when I was listening to Fresh Air on NPR. They were interviewing a blogger and book author named Laurie Edwards. Are you familiar with her? Earlier this year I read her first book called "Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties." For me, I found reading her thoughts and experiences as someone with a chronic illness to be very validating. Made me feel more "normal," at least while I was reading her book. LOL! :-)

You had asked if I had ever tried special diets or alternative medicine/treatments, and the answer is a big fat YES! You name it, and I'm game for it!

Back in July of 2011, I was desperate for an improved quality of life and I read a book called the "Lupus Recovery Diet" by Jill Harrington. Now, don't get me wrong, I didn't think I was actually going to cure my lupus, but her theories about leaky gut, food allergens, etc. made sense to me, and I adopted a pretty hardcore vegan, gluten-free diet for six solid months. Over the course of those six months it did seem to make a difference in my energy level, which then enabled me to increase my physicial activty, which then helped me feel even better. BUT ... it obviously wasn't enough to stave off the serious flare that started up last year.  

In 2012, I did a a four-week detox (closely supervised by my accupunctruist, but not approved by my rhuematologist; I know, I'm naughty!!!), and although I actually felt really crappy during the detox, I would do it again when I am on minimal meds, just to try and help my body cleanse and heal after all of the medicaiton I've been foced to put into it.

So after those two experiences, I now basically follow an anti-inflammatory/anti-allergen way of eating, and I avoid meat, poultry, cow dairy, and gluten. I do, however, allow myself to indulge in those foods now and then when I am socializing with friends and family. Otherwise, like you, I mostly eat lots of fruits, veggies, grains, fish, and "good fats" and I feel like, at the very least, I am supporting my body while it fights the good fight against lupus.

Gee, I feel like I've really "talked" your ear off tonight, so maybe we can chat another time about non-diet-related means of self-care or alternative treatments. You sound like a very well-informed lupus patient! And, I'm always eager to learn from others.

Would you mind if I ask if you are able to work full time while undergoing your Cytoxan treatments?

I hope that your week is going well, Beth.

Best regards,

Nina

Posted 4/18/2013 9:20 PM (GMT 0)
Nina,

Don't worry about your response time! No big deal:)
I'm so sorry you are exhausted after work. I know how that feels. I have been working about a 32 hour work week while taking the cytoxan treatments (5, six and half hour days). I get my treatment once a month on a Friday and take off Monday, back at work on Tuesday. The first three treatments were really rough and going back to work for the first week was brutal. However, my last two have been pretty good as long as I take Zofran for nausea and a diuretic to ensure I'm not retaining that toxic fluid for any longer than needed. I also have a healthcare job where I am on my feet all day and around sick people. I was really worried about picking something up that would make me really sick but so far so good:) I'm really starting to have more energy, so I have been trying to come home after work and be productive. Aka not napping or vegging out in front of a movie. I have one more treatment and then back to cellcept. Fingers crossed!
I will definitely have to read the book you suggested! Thanks for the recommendation.
I have tried the gluten free diet before. It was difficult and I ended up losing too much weight (after 4 months). Last summer when I was mid MEGA flare I started becoming incredibly sensitive to the sun. By the fall I had a rash all over my body. I even had my car tinted to filter UVA&B light. This spring has been good so far but I have been reading articles about "eating" your sunscreen. Basically there are certain vitamins that help you have a natural sunscreen to your skin. Needless to say, I am trying it! Check it out http://www.bbc.co.uk/sn/humanbody/truthaboutfood/young/tomatoes.shtml.
I have thought about doing a detox, but I will wait until I am stronger. Right now I have a routine of drinking my tomato/veggie smoothie in the morning with a bowl of high fiber cereal and almond milk then a salad with a fruit/veggie smoothie for lunch and then I eat whatever I want for dinner (but usually pretty healthy). I definitely feel a difference when I stick to a routine diet and sleep/work schedule.
I am not familiar with Colchisine. What is it for? Do you do any support groups? I would like to go to one but I can't find any in my area. How does the acupuncture work out for you? I have been thinking about trying it.
Ugh, I am so sorry you have to take a blast of prednisone:/ I had one of those during my 2nd infusion and it was soooooooo uncomfortable. I guess because it was through the infusion it made my face turn so round, so fast that after the initial swelling went down I felt like someone punched me in the face from my skin being so stretched, so quickly. However, I did instantly (a couple of days) feel much better. I had soooo much energy/anxiety I was getting up before work to do yoga so I wouldn't be a anxious nut during work. After about a month I started to relax again. I hope it works out for you.
Hope you start having more days with increased energy:)
Bests,
Beth
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