Immunosuppressive Therapy: So it begins…

Day 3. 40 mg of prednisone. I am lit. I cannot stop talking and pacing and doing and moving and thinking and saying and all the things are happening. I have slept a total of 4 hours in 3 days and that was at the point of complete exhaustion and collapse. Im in constant pain because of the constant moving.

It’s not good.

Again, it’s Day 3. Chemo still awaits. (insert heavy sigh)

 I need sleep.

 

Fat discrimination in healthcare

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I have to vent. I have to say this. This needs to be said.

I am sick and tired of doctors associating and dismissing everything if you are a patient who is overweight, to you being overweight.

Yes, I am overweight by medical standards. I know that. I know how much I weigh, I know my BMI. But I also know that I eat well and I exercise. So, while my weight may not fit into your box, if you actually looked at the food and exercise I log, instead of down your nose at me, you might discover something else. You know, something you might discover if you actually PRACTICE medicine. What if fat is a symptom and not the cause?

I have PCOS. I have autoimmune antibodies. Antibodies attacking my optic nerve. Antibodies attacking my connective tissue, scleroderma. Scleroderma has caused me to have gastroparesis. Gastroparesis makes me eat a low residue diet. Low fiber.

So when Im suffering from excruciating stomach pain and you look at me and assume I need to eat better, eat more fiber, that’s actually the WORST thing I could do. That would cause an obstruction. It could kill me. I know it goes against everything you’ve been taught about how the body works and what we should eat, but guess what? Its how MY body works. Try actually living against all the things you’ve been taught about eating.

All bodies are different and should be treated as such. I know you’re taught to look for horses and not zebras, but zebras exist. A zebra is never going to be a fucking horse no matter how much you try to make it one.

Rant over.

I’m still in here

Received an email from my new neurologist at the Cleveland Clinic today regarding testing results. There is a “significant” issue with my sympathetic nervous system. I need more testing. Blood, imaging, biopsy.  The wind had already been taken out of my sails because I’m currently dealing with a flare up with my gastroparesis. This lovely app on my phone indicates that my “quality of life” has dropped two points in the past month. This is an indication that I need to return to a liquid/mush diet. Perfect timing since I’m hosting extended family for Christmas dinner (insert heavy sarcasm)

I really try to put on the brave face, push forward and not let the disease rule. Today, I just need to collect myself. Back on the grind tomorrow….

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You might have a chronic illness if …

*I refresh this list as they come to me*

Sometimes you wanna go where everybody know your name and they’re always glad you came but you wish it wasn’t your doctor’s office.

You watch House and discover more probable ideas than your real life doctors have come up with.

You see your doctors more than your family members.

You and the pharmacist are on a first name basis.

You have a medication and doctor for each of your symptoms and for each side effect caused by the treatments and medications. Repeat. Repeat.

You know exactly how long it takes for your medication to take effect.

When people say, “Hi. How are you?” you no longer instinctively answer “Fine.”

You bring printed answers to new doctor’s offices and write ‘See attached’ under medications, diagnosis, surgeries …

Walgreens is your favorite store.

You get really excited upon finding a new Morton’s Epsom Salt LOTION.

What happened was …

Last June (2013)  I became very ill.

Between June to September I was sick on my stomach EVERYDAY. Nothing I ate stated down or in for very long and I was constantly nauseous. CONSTANTLY. Let’s stop to think back on the worst stomach flu or maybe food poisoning you’d ever experienced. Now try to appreciate what it would feel like to be that sick Every. Single. Day.

I was exhausted all the time, even when sleeping upwards of 16 hours a day. My hair started to break off near the root, leaving me with very itchy patches of stubble here and there on my scalp. Oh, and I also started dropping weight like crazy.

Being a female, I’ve been dieting since I was ten years old. I’ve done fad diets like Atkins, South Beach, 30/15, cabbage soup, I’ve done the calories in vs. calories out, I’ve lost 80pounds and gained it back. I beat my head into the wall trying to figure out why no matter how much I worked out and how little I ate or carbs v. protein, after having kids, the weight just wouldn’t go away. I figured out through testing that it was due to polycystic ovary syndrome and I guess that made it ok in my mind that the struggle existed, well at least it made sense. I promised to keep up the exercise in order to be healthy. I stopped being worried about the number on the scale. So, go figure that once I arrived at that point, my health went in the shitter.

For the first time in my life I was dropping weight without trying. People started to notice and tell me how awesome it was but I couldn’t agree. Having put health over scale, I knew there was nothing awesome going on. It was bad and I was scared. This tells you how absolutely shallow people can be. I am embarrassed that I had ever fallen into the thought pattern myself. Seriously, people, there are WAY bigger things going on in life and world than our weight. It’s superficial.

Anyway, I ended up having to go see a gastrointestinal specialist. I found out that I had this disorder called gastroparesis which is quite literally what it sounds like paralysis of the GI tract. The doctor said that he had additional concerns (because already losing most of your vision and having a stomach that doesn’t work wasn’t enough) because he believed that it may be autoimmune in nature.

Then I was sent to see a rheumatologist at the Cleveland Clinic. The way she reviewed my paperwork and gave me the once over made me uneasy. It was like a stereotypical therapist on TV who says “mmhmm” and makes notes after everything you say and you’re sure something you’ve said has revealed some deep down personality you know nothing about. I felt very vulnerable. The hospital gown didn’t help.
She runs blood work and says she will call me with the results.

Turns out…I have an autoimmune disease called scleroderma. I won’t go into the details because frankly they tend to send me into some sort of post traumatic stress. Basically it means that your body attacks the tissue in your body, producing too much collagen causing the tissue to harden. Not just your skin, but any tissue, like the tissue that is a part of your vital organs. Since It seems that I already have internal involvement….well, it is likely I will develop “complications”.

And that’s the explanation for my hiatus here. Now that it’s all out on of the table I will try to carry on.

The ‘Know It All’

Today my housemate’s Mom told her that she had a vision about me. She said she knows what’s wrong with me.

Apparently, my tattoos are causing my autoimmune issues. She looked it up on the internet, clearly the most reliable of sources. Everybody knows that everything on the internet is true! (sarcasm) I get that people without tattoos do not understand people with tattoos sometimes, but guess what? I don’t care if you understand and I don’t care if you approve. I can assuredly guarantee that I will not be concerning myself as to why she doesn’t have any. Normally, this would not bother me at all. My grandmother doesn’t like my tattoos. Fine by me.

But this is why I’m so irritated:

1. She’s bat shit crazy. That’s fine by me, but get some therapy or take some meds to help with the chemical imbalance so that you don’t keep spreading crazy around. This is the whole reason why her daughter and granddaughter are living with me.

2. She hates tattoos. She thinks they’re trashy.

3. I have 4 tattoos. All after the medical issues began. They have really been symbolic to my journey and have helped me heal a great deal of emotional wounds.
One specifically is my self harm insurance policy. It’s next to a scar. It reminds why I will never need to do it again.

And about a week ago there was a whole other incident in which she revealed her wicked witch persona and accidentally made an ass of herself in front of myself, my husband and children. Then she made the mistake of trying to excuse her behavior by blaming my friend and when I politely pointed out the flaws in her argument, she decided to attack me personally and since she didn’t have anything to point out that I had done to her, she’s now trying to make a character flaw out of my uncontrollable medical circumstances and then also decided to blame my tattoos because that too is something she deems as a character flaw.

This woman irritates the piss out of me because she is downright emotionally abusive to my friend that is living with us. In fact, she’s the reason why she’s living with us. The emotional and verbal abuse was so bad that it was toxic to my friend and her daughter and when she realized that I had offered to take her in, she evicted her own daughter and granddaughter a week before Christmas.

Clearly, I am the bad guy here.

And I quote …

Most of us at some juncture in our lives have played out in our minds how devastating it would be to have our doctor hand down cancer diagnosis or to warn us that we are at risk for a heart attack or stroke. Magazine articles television dramas and news headlines all bring such images home. But consider an equally devastating health crisis scenario, one that you rarely hear spoken about openly, one that receives almost no media attention. Imagine the slow, creeping escalation of seemingly amorphous symptoms: a tingling in the arms and fingers, the sudden appearance of a speckled rash across the face, the strange muscle weakness in the legs when climbing stairs, the fiery joints that imerge out of nowhere – any and all of which can signal the onset of a wide range of life altering and often debilitating autoimmune diseases.  —The Autoimmune Epidemic

Chemo

No matter how much you prepare and educate yourself, its just not enough when you actuality hear the recommendation for chemotherapy from a doctor.

I do not have cancer. I have a rare autoimmune retinopathy that is stealing my vision and in time will cause bilateral blindness. After months and months and a plethora of testing, bloodwork was sent to the one lab in the country that is able to detect antibodies that attck the eyes. I have them. This is a new area of medical science and detection so not a lot is known about causes or cures. The current “theory” is that you go through chemotherapy as immuno suppression, essentially to reboot. Like chemo for anything else, you commit to months or year plans and there is no guarantees. It would nor be rhe most heavy duty form of chemotherapy but it would be strong. I’ve been told that I need to weigh the cost v benefits of this.

My dark humor & sarcasm could spin off in hyper drive in defense of ‘what-ifs’ at this point. But the bottom line is that these options suck and frankly Id just like to raise my middle fingers in their general direction at this point and call it a night