More Ways to Help The Spoon Lady!

Christine Miserandino, creator of the Spoon Theory, is at the halfway mark towards her Go Fund Me Goal. Years of steroid use for controlling her Lupus have caused most of her teeth to fall out. Her dental and her medical bills are enormous and she still needs more dental surgery.

Christine’s Go Fund Me Goal is $50,000. If you haven’t donated yet, even five dollars would be helpful. And if you really can’t help, please share this post or her Go Fund Me link on social media.

But there are even more ways to help! How many chronically ill bloggers have been touched by Christine? How many of us consider ourselves “Spoonies” or even have “Spoons” in our blog title? You can help get the word out by putting a badge publicizing her fund, like I have done in my blog! You can get the code here.

And finally, the website Conscious Crafties, which sells items made by chronically ill people, has made a special shop for Christine where all the money sold from the items goes directly into Christine’s Go Fund Me account. You can take a look at Christine’s Shop and the Conscious Crafties website here.

Christine’s fundraising goal may seem like a lot of money but I have no doubt that she can achieve it!

As I said, if it’s difficult for you to donate money, I hope you will consider some of these other options!

Thank you.

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When I Look in the Mirror…

This is my first time posting with Finish the Sentence Friday. If you would like to link up or check it out you can do so here.

Today’s prompt is “When I Look in the Mirror…”

My first thought is …I see nothing good. Before I became chronically ill with conditions such as Lupus and depression, I though nothing of doing my hair and makeup every day, for work and the weekends. I never thought of going anywhere without doing myself up and I was pleased with my reflection.

Then I became sick and doing my hair, blowdrying it or curling it, became too painful. I could no longer stand up to do my makeup. Eventually I just didn’t bother any more. I was always clean, but could no longer improve my appearance. I wonder now where pretty went to.

I’ve been suffering from depression for a long time and it is both mentally and physically exhausting. I still do not have the energy to do my hair, going outside with it wet even in the winter. Because I have not blown it dry my hair frizzes up and I hate it.

I also see a double chin or two when I look in the mirror. I have gained 50 pounds from the psychiatric medications I am taking. I have lost some of the weight but still hate how fat my face looks.

When I look into the mirror I see someone who is mentally ill. I feel like I stand out in the crowd, like you could pick me out and tell I am sick. I feel like I don’t belong.

There are some things that do make me feel better about myself. I do color and cut my hair on a regular basis at a salon which also does my makeup for free. I feel like I look good every couple of months or so! And I also joined a Facebook group called “Pretty Sick”, which is a group that believes that just because you are sick doesn’t mean you have to look it. Now when I go out I make sure I put on lip gloss, that is easy enough to do.

What do you see when you look in the mirror?

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Trip to the Surgeon

I saw the surgeon yesterday to see about my gallbladder issues and he told me that in the absence of pain he did not believe that my gallbladder was the cause of my problems. Part of me was disappointed because I cannot deal with having this debilitating nausea with no cause and no effective way of treating it. I’d actually would be willing to have an organ taken out of my body if this would mean an end to this misery!

He mentioned that sometimes diabetics have trouble emptying their stomach which could definitely be a cause of my nausea. Actually thrilled to have somewhere else to turn, I looked this up on my smartphone on the way home but just like a gallbladder diagnosis, I did not have enough symptoms to indicate it.

I saw my endocrinologist too and was given a clean bill of health with my diabetic issues.

Today I was on Pinterest and I came upon a post that said something like “5 Symptoms You Didn’t Know Were Linked to Fibromyalgia”. I have been in remission with Fibro but I clicked on it and one of the lesser known symptoms was sweating. Then I just started googling all of my symptoms with Fibromyalgia and every one of them linked back to Fibro, including symptoms that I had chalked up to medication side effects such as dry mouth and hand tremors and even a low-grade fever.

I am some what excited about this being a possibility but I don’t see my Rheumatologist until the beginning of March so I can’t confirm it. Then I got depressed because there’s not a whole lot of treatment out there for Fibro and I pictured myself being nauseous forever and it wasn’t pretty. I cannot take a lot of the medications for nausea because they interact with my mental health medications and the one I am on now takes a long time to work and makes me tired.

My house is a wreck and I can’t do much with Tyler. Jacques waits on me hand and foot but he can’t do everything. Tonight is Bingo night at Tyler’s school and I am praying that I feel well enough to go. I hate disappointing him but sad to say he is used to it and still tells me I’m the best mom in the world. But I wonder if he will resent it when he grows up? There was a time in Tyler’s life when I felt pretty good but he was too young to remember it.

Part of me says I should be grateful because I’ve certainly been sicker than this with the pain from Lupus and the mental illnesses. But for my son, I just want to be better.

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Health and Holiday Update

So I am still experiencing nausea with a low grade fever. You can also add to that periods of excessive sweating and mega thirst and urination. The thirst and urination could be blamed on high blood sugar, except my blood sugar levels are normal when I test them.

I went to see my Gastroenterologist and she said she didn’t think my gallstone could be causing my symptoms. She ran blood and urine tests which came back normal and she also ordered a HIDA scan which would test how my gallbladder was functioning. A few days later she called to say she was surprised to find anything wrong but my gallbladder was indeed functioning at a slower rate than normal. The normal range starts at 35 and mine was at a 24. She suggested I consult with a surgeon but she said, “I don’t know, it’s like 50/50 this is the cause of your symptoms”.

I see the surgeon mid-January but I also made appointments with my Rheumatologist and Gynecologist and will make one with an endocrinologist, leaving no stone unturned. I don’t want to have my gallbladder removed if it’s not the cause of my symptoms!

A lot of my symptoms can be explained by Lupus but I can’t get in to see my Rheumatologist until March! How can I live like this for that long, or even delay surgery that I might need? I will try to see if I can get in sooner on a cancellation.

I felt okay for Christmas and Tyler, Grant, Jacques and I were all able to have a good time. Tyler liked all of his gifts plus the cash we gave him. I guess he is getting to be that age! This was his first year that he didn’t believe in Santa Claus but he was still excited!

The next day I was sick as a dog. Tyler was very understanding but I don’t like him playing video games all day while I just lay in bed. I want him to have a decent winter break with fun things to do. If I feel well enough later today we are planning on going to a movie. Sometimes I feel okay but after a shower the nausea comes, maybe because I am upright and moving about, I don’t know.

If I don’t write again, hope you all have a Happy New Year!

Tyler with his favorite toy!

Tyler with his favorite toy!

Burnt Out!

The other week I went to my new Rheumatologist. After three tries at the Cleveland Clinic, I have finally found a Rheum whom I love!

He questioned my Lyme Disease diagnosis,` and I have an appointment with an Infectious Disease specialist in a couple of weeks, hopefully to finally know whether I actually have Lyme.

It appears that my joint hypermobililty has gotten worse, especially in my wrists. I have been having to immobilize them by bandaging them, and needing to take pain medication. We took X-rays of my hands and wrists.

One of the greatest things about this doctor was that he didn’t hurt me at all! All of my other Rheums, well the ones who actually cared to examine me, would mash up my joints and cause great pain.

But the best thing about the appointment was that because I was not showing symptoms of Lupus, the doctor thought that the Lupus has “burnt itself out”, which means improvement or remission of disease, and no more symptoms of Lupus in my body! According to the London Lupus Centre, “With the evolution of knowledge that has come about concerning lupus, it is clear that for most patients, a normal and active life is entirely possible. Even in those patients going through a long and seemingly endless flare of disease; improvement or ‘remission’ of disease is likely. The disease does burn itself out.”

The blood work may or may not support the doctor’s theory, but I can’t help feeling like it is true!

Of all of the Lupies I know, I am the first one to hear this “burnt out” term. My friends with Lupus, there is hope for us all! New medicines such as Benlysta and earlier detection is making this possible!

I ask all of you whom are fighting this horrendous disease to please have hope. Perhaps our dreams of a total cure are not as far away as we think!

Have any of you been told that your Lupus has burnt itself out?

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Photo credit: Reema Chadha.