but I got approved for disability! It’s been so worth the chaos and stress I’ve been through. Now I can focus on getting better. I have a hospitalization at the beginning of June to try and capture one of my seizures to find the source. I really like my new specialist. He told me, “I’m not sending you off to any other specialists. I will find out what is wrong with you and treat it.” Don’t trust doctors, but I will hold him to it since he said it!
So yeah still feeling shit, but I’m glad I don’t have to worry about money issues as much.
When you’re always in pain, so when you’re really sick, you can’t even tell. Like when you think you have a really bad cold, but really it’s pneumonia. Love when the doctor says, “I don’t even know how you dealt with it for this long.” Hahaha doc.
Even though I’m sick and I’m not working because I’m trying to take care of myself, my sister and her wife are CONSTANTLY asking me to watch their 1 year old son. I love my nephew and love spending time with him. There have been a few times when I was just too sick to help, but overall I’ve done a lot!
They keep saying to my mom and me, “Oh we’re paying her by giving her toilet paper and paper towels. (They buy in bulk) And we have her favorite taco dip when she comes over.” Which is all helpful, well and good. But I feel like they think just because I’m not working that I’m just always available. My boyfriend thinks they are taking advantage of my kindness and the fact that I like spending time with my nephew.
There are a few things bothering me. Before their son was born, they would take my daughter for an overnight once in a while or on her birthday take her overnight and then go bowling and what have you. I understand that they are much busier now, but they seem to have time to go out all the fucking time. They haven’t taken or spent anytime with their niece since he’s been born. They are constantly treating her like she’s so bad or going to destroy their house, when really she’s just being a kid. She has ADHD, she’s hyper. Their kid will probably be the same way since it runs in my family. My sister’s wife asked me to watch my nephew while she was studying, but then asked me not to bring my daughter with me because she would talk to her too much. There are a couple times they have asked me to watch him but not bring her.
They are constantly saying how broke they are, but they just got new cars a few months ago. Just this month they got new iphone 5’s, my sister got a new ipad (she had an old one), her wife got a touch screen laptop and my sister got a macbook. Apparently, these were necessities, since my sister is going to school now and wouldn’t be able to do schoolwork on an ipad, also because she has a tendency to accidentally download viruses, the macbook was a better computer for her. Her wife claims that her old laptop (which is the same brand as mine and newer) has all types of problems. (Mine is amazing and works fine) The new ipad was a Christmas present. I told my sister’s wife that I would buy the old laptop or ipad, but they need the old laptop to print off of and they are using the ipad for my 1 year old nephew. They are gonna get some kind of baby case for it so he can watch Blue’s Clues and play baby games. Ok. Whatever I let that go.
This is what kind of threw me over the edge today. Apparently they took my cousins children (that would make them my second cousins) overnight and then took them all to Discovery World. I know that they want to spend time with the baby too…BUT, I think it’s really shitty that they are taking someone’s kids that they barely spend time with, but never spend any time with my daughter.
I feel like part of me is overreacting, but part of me feels like I’m being shit on.
Sorry for the rant. I guess I just needed to let that all out.
Okay I need some help. I take some seizure meds, that are necessary to take. However, they make me extremely sedated and when you have chronic fatigue that is not helpful. I spend at least half of my day feeling like I’m narcoleptic. I go for a walk and try to move around. Are there any natural things I could take or do to make myself not so sleepy all the time? Thanks in advance.
I swear, all of my doctors except my primary, don’t give two shits what happens to me. They say they don’t want to prescribe more meds and I DON’T want more meds, but I would like them to listen to wtf is going on and chart it so that if something happens they do know what I’ve done so far. I’m so tired of all of them telling me that they don’t what to do and can’t help me, or that everything is related to fibromyalgia and chronic fatigue. Yes, that is the main source of my problems, but all of my docs also say I shouldn’t be having seizures because of fibro. But they don’t know what the cause is. I’ve seen EVERY specialist imaginable and they always just send me to another specialist. I’m just so frustrated. And I only continue to go because I have to for my disability. UGH.
During the day, I’m falling asleep while sitting at my laptop, when I want to be awake. At night when I’m tired and want to go to bed, I’m wide awake. I swear if I was allowed to just sleep all day, I would like to try one day and see if I could actually do it.
I’ve been having a rough time lately and I’m sorry if I haven’t updated much. I’m now permanently off of work…at least for now. I’ve applied for disability and have at the very least a 6 month wait, probably longer. I’ve enlisted a wonderful lawyer and I’m hoping that this will help me. Meanwhile I’ve applied for W2 (Welfare) and Unemployment…I haven’t heard anything about unemployment yet and am still waiting for the state insurance to go through. I’m scared because my lawyer told me to keep all of my appointments, but how can I if I don’t have insurance?? Also, the welfare was approved, but I only get $124 the first month, $300 the second month and the first full payment is December for $600. My rent is $600…will I be evicted? My landlord has been pretty understanding, but I now owe him $900. So needless to say I’ve been in a funk and wrought with anxiety and worry.
1. The illness I live with is:
Fibromyalgia, Chronic Fatigue, Depression, Anxiety
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
Coming to terms with the fact that I can’t do everything.
5. Most people assume:
That my problems are easily cured by exercise, yoga, acupuncture, and sucking it up. All of which I’ve tried with some wonderful benefits, but definitely not cured.
6. The hardest part about mornings are:
Getting up out of the bed.
7. My favorite medical TV show is:
I don’t really watch tv, but I guess I would have to say Scrubs.
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
Falling asleep, my mind running a thousand miles a minute, restless legs
10. Each day I take __ pills & vitamins:
At least 20.
11. Regarding alternative treatments I:
feel that swedish massage is really helpful, but never lasts long enough and I can’t afford to have it done more than once a month, but really need it at least once a week. Acupuncture was helpful and seemed to help, but at $90 a pop, too expensive. Exercise is something I do when I can, but wish I could do more of. Basically all alternative treatments that work are expensive and not covered by insurance.
12. If I had to choose between an invisible illness or visible I would choose:
I would rather be myself. So I guess invisible.
13. Regarding working and career:
I have been working since I was 14 and now I’ve come to terms with the fact that I cannot physically work full-time. One day, maybe I can do part-time or volunteer.
14. People would be surprised to know:
I’m an open book, so not much to be suprised about.
15. The hardest thing to accept about my new reality has been:
The fact that I cannot earn money and that I don’t have energy to do much. Also, that my anxiety prevents me from being around too many people, since I truly do like meeting new people.
16. Something I never thought I could do with my illness that I did was:
Go to Warped Tour
17. The commercials about my illness:
Don’t watch tv, but the ones I’ve seen are hugely inaccurate.
18. Something I really miss doing since I was diagnosed is:
Going to concerts
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
Go to a concert, go grocery shopping, spend time with my daughter running around town.
22. My illness has taught me:
Not to judge others and to be more understanding.
23. One thing people say that gets under my skin is:
You look fine.
24. But I love it when people:
Are supportive and understanding.
25. My favorite motto, scripture, quote that gets me through tough times is:
It is what it is.
26. When someone is diagnosed I’d like to tell them:
You have no idea what you’re in for, but it’s not the end of the world. Do not let it beat you down or define who you are.
27. Something that has surprised me about living with an illness is:
that some people can really be hurtful and heartless. I like to believe that everyone is good deep down and will show compassion. This is not always the case.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Hang out with me all night watching movies or just listening to me babble.
29. I’m involved with Invisible Illness Week because:
It’s an important cause that people should be involved in.
30. The fact that you read this list makes me feel:
humbled and happy