Today is shot day. Today is day when I can go out in public and no one knows that I have yellow poison raging through my veins. No one has any idea that I just gave myself an injection of chemotherapy that will cause my body to explode in pain, nausea and a massive dose of fatigue over the next hour and will rage on for the next two days. No one carries this silent burden but me and my body and no one can fully understand the impact this one day, this one shot has on me and my life.
In hopes to raise a little more awareness for my "Invisible Illness" I am going to share 30 facts about how my autoimmune disease affects my body that you may and you may not be able to see.
1. I take 15 pills a day, 105 pills a week, 450 pills a month and 5,475 pills a year and that is if nothing changes and something ALWAYS changes!
2. I take 8 cc of chemotherapy a week, approximately 32 cc a month and approximately 384 cc a year of this toxic drug called Methotraxate. Yes, as of right now I will be on chemotherapy for the rest of my life.
3. The chemotherapy has lowered my immune system to that of an infant or an older adult and leaves me very susceptible to infections such as the common cold, influenza and all bacteria and viruses. The chemotherapy actually makes me have a higher risk of developing cancer later in life. Basically, I am a walking add for hand sanitizer!!!!!!
4. My hair falls out every time I brush it, take a shower or just change my shirt. It has resulted in a bald spot next to my ear and thinning out so much that it can be uncomfortable to wear my hair down. The only advice the doctors can give me is to take more vitamins.
5. Vitamins........my body no longer absorbs vitamins like most people and in order to properly take in vitamins I am encouraged to get infused on a weekly to bi-weekly basis. It tastes so bad that I have thrown up and actually needed candy in my mouth at all times so that I could not taste the medication injected during the infusion process.
6. My disease has caused severe nerve damage and I no longer can feel with my hands or feet. This is called neuropothay and it is unable to be reversed. My nerve endings can no longer sense things such as heat, cold or even pain in my hands or feet. The odd part is that it causes severe pain to radiate from the hands and feet through my arms and legs.
7. My joints on my fingers swell and give my fingers a sausage like look:-)
8. My joint on my ankle now swells and causes an attach of psoriasis on the ankle joint itself. The psoriasis will become raw and bleed as it flares with my Lupus cycles. The psoriasis has also moved to my finger nails giving them a ridged, pitted look. I fear everyday that they will fall off because I think that would be just gross!!!!!!
9. Lupus causes sores on my scalp, in my nose and in my mouth. This makes it difficult to wash my hair, blow my nose and eat and brush my teethe. Miracle Mouthwash is amazing and numbs my mouth so I can get through the day!!!!
10. I have some sort of kidney issue everyday. It can result from cloudy urine, passing pieces through my urine and constant kidney pain in the lower right side of my back. This must be monitored all the time due to the high risk of kidney failure in Lupus patients.
11. I have white matter on my brain. We are closely monitoring the white matter to document the changes in it so we can get a clear diagnosis of what exactly it is.
12. Lifting my hands above my head is almost impossible everyday.
13. People think I love to be in my pajamas but the truth is, sometimes it is to hard to take them off so I have to stay in them. I would love to be able to get dressed everyday without assistance but honestly most of the time I can not hence the love of the pj was born!!!!!!
14. I have a hard time tying my show and putting earrings in because I can not feel my fingers.
15. I will have days where I feel constant vibrations through out my arms and my legs.........and no, this is not cool.
16. I am not supposed to be in the sun AT ALL!!!!! The sun can trigger a Lupus flare and also can cause adverse reactions in over half of my medications. These reactions range from joint pain, rash and internal organ failure. That is why I am in pants even when it is 115 outside and can be seen wearing long sleeves into the summer. Hats are supposed to help but they tend to lead to more sores on my head and irritation with my hair.
17. Water is all I drink. I have to find a way to be kind to my body because it just wants to hurt itself<3
18. I have not reached REM sleep in over 15 years. It is a common fact that Lupus patients are so tired because they no longer can reach the deepest of sleep where the most rest for our body occurs. This is due to the constant pain we find ourselves in while we are awake and while we are sleeping.
19. The pain can be so intense at times that it hurts to have anything touch my skin. Clothes, blankets and even gentle hugs can cause so much pain for hours at a time. I am a hugger so this has proven very difficult for me.
20. We are unable to control my blood pressure with medication, lack of salt in my diet or exercise so I have to go in and have an ultrasound of my heart done over the next month or so to make sure it is beating properly. I am more excited about this than nervous!!!!!! I am actually going to see my heart in motion!!!!!!
21. I am in some form of pain all of the time and this causes my body to work so hard that it sucks the life out of me on a daily basis.
22. Most autoimmune diseases travel in pairs. They do not like to be alone in the body so I am constantly being tested for other things and will continued to be tested for the rest of my life. I have been treated for Sjogrens Syndrome, Psoriasis and I am examined for MS once a year.
23. I have lost lots of friends over the course of my disease due to cancellations I have to make, missed phone calls I can not return and just the inability to keep up with everyone. It is not that I do not love my friends or don't want t see them, sometimes it just hurts to much to get out of bed or I am so exhausted that a phone call will cost me all my daily activities.
24. I suffer from brain fog. I will forget where I put my keys. I will put the milk away in the cabinet and put the cereal in the fridge. I will forget my phone number and address and the names of my friends. This brain fog can be so hard to understand that I have been tested for early on set Alzheimer's before.
25. I have to take a decongestant everyday because a stuffy nose leads to a sinus infection, a sinus infection leads to an ear infection, an ear infection leads to a respiratory infection and a respiratory infection leads to pneumonia. All of this leads to me in the hospital and I do not like that one bit!!!!!!
26. There is some evidence of autoimmune diseases in my family but not an over abundant amount.
27. If you look at my DNA the doctors can show you where my disease is and where the mutation has occurred. I have always had this mutation but in order for it to become active something had to have set it off. The doctors believe that when I moved from a cooler climate in Ohio to the a warmer climate here in Arizona that set off my disease activity.
28. Just because I have Lupus does not mean that I will pass it on to my children. Also, you can not catch Lupus from me but because I have Lupus I can catch all your germy germs, hehehehehe!!!!!!
29. Due to the pain I feel on a daily basis I have become pretty tolerant. This can be good and bad. I can withstand normal pain a lot better than most but I no longer recognize really bad pain such as the pain associated with kidney infections. So I must be more vigilant with all the other symptoms my body shows me so I can judge when something is really wrong.
30. I am not lazy, I am not stupid and I am not crazy.......I just have Lupus!!!!!!
