A guy (who is a regular at work) told me today “you’ve gotten ‘slower’ since you dyed your hair red.” At the time I wasn’t really thinking about it cause I was busy trying to get his transaction done. But now I’m sitting here thinking. What an ignorant ass comment to make. The truth is yea I am slowing down. NO it’s not because I ‘dyed my hair red’. It’s because every day my pain increases. Today especially, was a hard day for me. Constant cramping/stabbing pains. On top of it my stomach/bowels are acting up. I just love how people never once think about what they’re saying before they try to put you down for something that they have no idea about. 😦
On another note I’ve done some research and since I started the Lupron shot 6 months ago (I am done with it) my blood pressure has been high. But now that I am off of it my blood pressure is still not coming down. I’m considered Prehypertension, borderline High Blood Pressure. My pulse is higher than it used to be. I also ran a low grade fever the entire time I was on Lupron which was very odd for me since I’ve always ran rather low and lower than the norm. Thankfully my temp has come down recently but the blood pressure and pulse, no, it just keeps rising.
When I tell people I feel different, even if I can’t explain how/why I feel different, believe me I’m not the same at all. This is one of those instances where I can prove the difference as well as the 20+ lbs I have put on since April. I was 115 when I went on the shot..granted I had just been sick and lost a little weight. I am now up to 138-140lbs. I have NEVER weighed this much.. it might not be a lot to you but when I no longer fit into anything that I just recently bought because of weight gain, it upsets me. I just feel different. I don’t feel like me anymore.
UPDATE: After seeing the neurologist today… I have to get an EMG test done. Poke me with needles and stimulate my nerves to find out what is wrong with my right side. He did note my right leg is definitely weaker than my left. He also upped my Elavil. So I see a: Reproductive Endocrinologist/OBGYN, Neurologist, Gastroenterologist, and Nurse Practitioner (My PCP). That’s ALOT of specialists/Drs. I feel broken and I’m just their guinea pig.
Unfortunately I can’t get in for the EMG until beginning of November, then have to schedule another appointment to get the results and I’m waiting for a call back to find out when my colonoscopy will be. I just really hope my hysterectomy doesn’t get pushed too far out because of all this. My RE was shooting for mid November but I don’t know. A little overwhelmed…
Now just trying to relax because I’m in a good amount of pain right now. Heating pad, Couch and Vicodin you will be my friends today!!!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Endometriosis/PCOS/Infertility
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: 2012
4. The biggest adjustment I’ve had to make is: Never having children & living with pain EVERYDAY of my life.
5. Most people assume: I exaggerate/fake it.
6. The hardest part about mornings are: Moving around/Showering/Getting dressed with severe pain.
7. My favorite medical TV show is: The Doctors
8. A gadget I couldn’t live without is: Phone
9. The hardest part about nights are: Trying to lay down in bed when my body hurts so badly from the current day.
10. Each day I take 3+ pills & vitamins.
11. Regarding alternative treatments I: have tried Fertility treatments, Surgeries, Birth Control, Lupron, Herbal Meds and they did not work. I’m contemplating a hysterectomy that will definitely help.
12. If I had to choose between an invisible illness or visible I would choose: Not sure but I think people would better understand an illness that was more visible.
13. Regarding working and career: It’s nearly impossible. I hardly make it through the day, the days that I am able to actually work.
14. People would be surprised to know: that I have spent 6+ THOUSAND Dollars on trying to conceive a baby and IVF would cost me an additional $15,000 per try.
15. The hardest thing to accept about my new reality has been: I will never have children.
16. Something I never thought I could do with my illness that I did was: make it through the day.
17. The commercials about my illness: depict barbed wire wrapped around my abdomen. Pretty accurate.
18. Something I really miss doing since I was diagnosed is: having a sexual relationship with my husband.
19. It was really hard to have to give up: having a family. No one will ever understand that loss.
20. A new hobby I have taken up since my diagnosis is: Blogging.
21. If I could have one day of feeling normal again I would: try to get pregnant.
22. My illness has taught me: to be thankful for everything that I do have in my life.
23. Want to know a secret? One thing people say that gets under my skin is: I know someone who got pregnant with what you have, it’s not impossible. You’re still young you have many years to get pregnant. (NO I don’t have many years and NO it’s NOT that easy for EVERYONE to get pregnant. My disease is very severe.)
24. But I love it when people: try to understand and don’t judge/attack me for the truth of my disease.
25. My favorite motto, scripture, quote that gets me through tough times is: Never Give Up. When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure.
26. When someone is diagnosed I’d like to tell them: It’s not going to be easy but don’t give up.
27. Something that has surprised me about living with an illness is: how quickly people/friends/family will judge you and how people think they get it when in fact they have no idea.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband listens to me, rubs me when I’m sore, helps pick up the house and takes care of the animals when I can’t.
29. I’m involved with Invisible Illness Week because: I want people to be more aware of Endometriosis and how life altering it really is.
30. The fact that you read this list makes me feel: good.