Without further delay here are my 30 Things!!!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Trigeminal Neuralgia and suspected Multiple sclerosis.
2. I was diagnosed with it in the year: ....October 2014 I was diagnosed with TN. After TN, which is a first sign in some patients with MS, other symptoms followed. I haven't had an official MS diagnosis because even though I'm highly symptomatic I have to meet certain criteria and docs are reluctant. I've been getting test, for what will be a year in October, that eliminate diseases that mimic MS.
3. But I had symptoms since: I recall years ago thinking I suffered a stroke. My face was numb, my arms were weak, shortly after I begin developing terrible migraines. I'd say it's been at least ten or 15 years I've had episodes of numbing and itching, weakness and dizziness. I never ever thought it was MS and docs chalked it up to migraines. Trigeminal Neuralgia started in July 2014. I thought it was tooth pain because it started like a dull ache in my gums. But it started to increase. It was beyond any pain medication that could be prescribed. Dentist called it an unusual pain.
4. The biggest adjustment I’ve had to make is: With TN I've had to be careful when eating. To much pressure causes electrical like zaps to shoot across my face. It's very painful and often times I don't finish my meal because of it. I have to take caution when ppl kiss my cheek, when I brush my teeth, and when wind blows. All of those things bring pain. With MS symptoms I've really had to adjust. I've cried and felt like I've lost something. I'm getting creative though. I can't let it win!
5. Most people assume: I think ppl see me upbeat, talking, smiling and I'm ok. They don't see the days when I have to go pee several times a day because my bladder is weak, or when I'm trying not to smile to hard because TN might shock me. Ppl can't see when my muscles are tightening, and how painful that is. So they assume I can carry on normal everyday activities and not be affected because I don't look sick.
6. The hardest part about mornings are: THE PAIN! I try to stretch throughout the day. My everything hurts.
7. My favorite medical TV show is: Grey's Anatomy!!
8. A gadget I couldn’t live without is: ...oh don't have many gadgets. When my hands are weak I use hubby or kids hands!
9. The hardest part about nights are: Trying to go to sleep, and stay sleep. I have a lot of hand tremors at night to. They wake me up at times.
10. Each day I take pills & vitamins. (No comments, please) Antidepressants , Anticonvulsant 8x per day (for TN it's the only thing that helps control the nerve pain. Normal pain meds don't cut it). Migraine meds to. I can go a long time with a headache if I don't catch them fast enough. And I usually take Biotin a B vitamin that supports hair growth. Because of nerve damage my hair doesn't grow well in a specific spot.
11. Regarding alternative treatments I: have tried meditation, acupuncture, cannabis oil, essential oils, and herbal tea. Essential oils are my favorite!
12. If I had to choose between an invisible illness or visible I would choose: ahh maybe invisible because even though I want hugs and love sometimes I don't want ppl to look at me and feel completely sorry for me. Then Idk I don't want either...as I think about it I just don't think you could choose.
13. Regarding working and career: The fatigue was so debilitating I had to resign from my job. I was a case manager working with at risk kids. I enjoyed my work.
14. People would be surprised to know: I'm pretty open I'm not sure there are any surprises!
15. The hardest thing to accept about my new reality has been: I have gained weight! Mobility issues keep me from engaging in exercise like I used to. I want to learn to swim. They say water exercise is better, less impact on the muscles.
16. Something I never thought I could do with my illness that I did was: live with it! I didn't know how life would be. I'm living it and I'm finding new ways to do things.
17. The commercials about my illness: Aren't there. No commercials exist for TN. There aren't many for MS either. I hope that changes!
18. Something I really miss doing since I was diagnosed is: running!!!! Exercise causes pain, fatigued muscles, and weakness.
19. It was really hard to have to give up: my work!
20. A new hobby I have taken up since my diagnosis is: um haven't developed a hobby yet... I'm stay at home mom now with four children so I'm still busy. I guess on down time I binge on Netflix.
21. If I could have one day of feeling normal again I would: Go have fun with my family!!!
22. My illness has taught me: To be GRATEFUL. To LOVE. To be patient. To slow down. To be honest about how I feel. To trust the Spirit instead of man.
23. Want to know a secret? One thing people say that gets under my skin is: oh well my legs hurt to....oh well hunni go take some ibuprofen, and my religious friends...don't claim that sickness!!! Lol it's not good with my mind to pretend I don't feel what I'm feeling. I've done what I can do in the prayer department. All I can do now is trust the process.
24. But I love it when people: say, "I'm sorry that has happened to you", or "Let's focus on what you can do", or when people just treat me normal and they don't make a huge fuss...
25. My favorite motto, scripture, quote that gets me through tough times is: The belief that God will get glory from my life. That someone will be touched through my experience. That I still have purpose. Even with this shift my purpose still remains. No quote just those truths.
26. When someone is diagnosed I’d like to tell them: Be patient with yourself. Be frank with people about how you feel with their comments. And be your own health advocate. No one knows your body like you and if your doctor can't get on board fire him and get a new one!
27. Something that has surprised me about living with an illness is: The increased love and openness others do share with you. Oh and how I get over things so quickly now. Some things are so small in relation to having zaps shoot through your face or muscle tremors at night!
28. The nicest thing someone did for me when I wasn’t feeling well was: visit me.
29. I’m involved with Invisible Illness Week because: I understand what it feels like to feel invisible.
30. The fact that you read this list makes me feel: respected!
2. I was diagnosed with it in the year: ....October 2014 I was diagnosed with TN. After TN, which is a first sign in some patients with MS, other symptoms followed. I haven't had an official MS diagnosis because even though I'm highly symptomatic I have to meet certain criteria and docs are reluctant. I've been getting test, for what will be a year in October, that eliminate diseases that mimic MS.
3. But I had symptoms since: I recall years ago thinking I suffered a stroke. My face was numb, my arms were weak, shortly after I begin developing terrible migraines. I'd say it's been at least ten or 15 years I've had episodes of numbing and itching, weakness and dizziness. I never ever thought it was MS and docs chalked it up to migraines. Trigeminal Neuralgia started in July 2014. I thought it was tooth pain because it started like a dull ache in my gums. But it started to increase. It was beyond any pain medication that could be prescribed. Dentist called it an unusual pain.
4. The biggest adjustment I’ve had to make is: With TN I've had to be careful when eating. To much pressure causes electrical like zaps to shoot across my face. It's very painful and often times I don't finish my meal because of it. I have to take caution when ppl kiss my cheek, when I brush my teeth, and when wind blows. All of those things bring pain. With MS symptoms I've really had to adjust. I've cried and felt like I've lost something. I'm getting creative though. I can't let it win!
5. Most people assume: I think ppl see me upbeat, talking, smiling and I'm ok. They don't see the days when I have to go pee several times a day because my bladder is weak, or when I'm trying not to smile to hard because TN might shock me. Ppl can't see when my muscles are tightening, and how painful that is. So they assume I can carry on normal everyday activities and not be affected because I don't look sick.
6. The hardest part about mornings are: THE PAIN! I try to stretch throughout the day. My everything hurts.
7. My favorite medical TV show is: Grey's Anatomy!!
8. A gadget I couldn’t live without is: ...oh don't have many gadgets. When my hands are weak I use hubby or kids hands!
9. The hardest part about nights are: Trying to go to sleep, and stay sleep. I have a lot of hand tremors at night to. They wake me up at times.
10. Each day I take pills & vitamins. (No comments, please) Antidepressants , Anticonvulsant 8x per day (for TN it's the only thing that helps control the nerve pain. Normal pain meds don't cut it). Migraine meds to. I can go a long time with a headache if I don't catch them fast enough. And I usually take Biotin a B vitamin that supports hair growth. Because of nerve damage my hair doesn't grow well in a specific spot.
11. Regarding alternative treatments I: have tried meditation, acupuncture, cannabis oil, essential oils, and herbal tea. Essential oils are my favorite!
12. If I had to choose between an invisible illness or visible I would choose: ahh maybe invisible because even though I want hugs and love sometimes I don't want ppl to look at me and feel completely sorry for me. Then Idk I don't want either...as I think about it I just don't think you could choose.
13. Regarding working and career: The fatigue was so debilitating I had to resign from my job. I was a case manager working with at risk kids. I enjoyed my work.
14. People would be surprised to know: I'm pretty open I'm not sure there are any surprises!
15. The hardest thing to accept about my new reality has been: I have gained weight! Mobility issues keep me from engaging in exercise like I used to. I want to learn to swim. They say water exercise is better, less impact on the muscles.
16. Something I never thought I could do with my illness that I did was: live with it! I didn't know how life would be. I'm living it and I'm finding new ways to do things.
17. The commercials about my illness: Aren't there. No commercials exist for TN. There aren't many for MS either. I hope that changes!
18. Something I really miss doing since I was diagnosed is: running!!!! Exercise causes pain, fatigued muscles, and weakness.
19. It was really hard to have to give up: my work!
20. A new hobby I have taken up since my diagnosis is: um haven't developed a hobby yet... I'm stay at home mom now with four children so I'm still busy. I guess on down time I binge on Netflix.
21. If I could have one day of feeling normal again I would: Go have fun with my family!!!
22. My illness has taught me: To be GRATEFUL. To LOVE. To be patient. To slow down. To be honest about how I feel. To trust the Spirit instead of man.
23. Want to know a secret? One thing people say that gets under my skin is: oh well my legs hurt to....oh well hunni go take some ibuprofen, and my religious friends...don't claim that sickness!!! Lol it's not good with my mind to pretend I don't feel what I'm feeling. I've done what I can do in the prayer department. All I can do now is trust the process.
24. But I love it when people: say, "I'm sorry that has happened to you", or "Let's focus on what you can do", or when people just treat me normal and they don't make a huge fuss...
25. My favorite motto, scripture, quote that gets me through tough times is: The belief that God will get glory from my life. That someone will be touched through my experience. That I still have purpose. Even with this shift my purpose still remains. No quote just those truths.
26. When someone is diagnosed I’d like to tell them: Be patient with yourself. Be frank with people about how you feel with their comments. And be your own health advocate. No one knows your body like you and if your doctor can't get on board fire him and get a new one!
27. Something that has surprised me about living with an illness is: The increased love and openness others do share with you. Oh and how I get over things so quickly now. Some things are so small in relation to having zaps shoot through your face or muscle tremors at night!
28. The nicest thing someone did for me when I wasn’t feeling well was: visit me.
29. I’m involved with Invisible Illness Week because: I understand what it feels like to feel invisible.
30. The fact that you read this list makes me feel: respected!
Thank you my butterflies! Until next time keep becoming.....
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