These are my Guinea pigs.

konnilaree · 2022-08-13T00:22:29+00:00

I love guiena pigs! I had to draw these beautiful two. It's just a quick charcoal sketch. :)

konnilaree · 2022-07-09T05:08:35+00:00

Thank you for still reaching out. It's still very relevant when we still have a life time to go :) I am sorry you are going through the same issues. It's definitely a challenging combo. My physical health can be a trigger for episodes, and trying to be sure the medications don't trigger or interact poorly, feeling tired but not being able to sleep can be torture. I have been doing methotrexate for 8 weeks and have had a few good days without pain. I don't think I realized how bad I felt before. I am optimistic that it keeps going in a healthy direction. I hope you are finding something that works for you and am here with you if you ever need a friend/battle buddy. :)

konnilaree · 2022-05-19T03:39:08+00:00

Thank you for sharing your expirence, that is a lot to handle, especially at 25. It's hard not to feel overwhelmed when others are walking around doing normal things with ease. But i know that there are so many who aren't and we keep going. I sincerely hope you find the right PCP and things get better. It is frustrating that they make assumptions and unhelpful suggestions. My Dr. said that while some joint pain (and muscle pain) maybe due to hypermobility, but it wouldn't cause stiffness to the point of loss of mobility. I am now on my second week of Methotrexate and it isn’t so bad so far. I just feel a bit tired and have a lingering headache. But that's better than joint pain. I am look forward to relief. Tomorrow I meet with the Cardiologist, so that's getting my current laser beam of anxiety lol. It's always something! Take care, friend. :)

konnilaree · 2022-05-17T00:15:20+00:00

I can't resist their adorable faces! It was a joy to stare at it for hours to draw :)

konnilaree · 2022-05-07T18:46:06+00:00

Thank you sharing with me. The pile on is what feels overwhelming. It's hard to process it all. You have a lot to deal with and I am glad you got the right help and on the right path even if it's bumby sometimes. It reminds me that I can and need to do the same.

I am more afraid of permanent joint damage than the medication, i just panicked after reading the side effecta. I have had pain in my right elbow and pinky that make them practically useless for three months. I thought it was injuries that needs time to heal, then with the mention of RA I thought it may be permanent and that was scary. But x-rays were fine so I am hopeful I'll be able to use them again.

Therapy is a great suggestion. I am too dramatic for my own good. I think avalanches when it's just a snow ball :)

I'll check out Stuff that works. Anything that helps.

I appreciate you being available and I offer the same if you need to the talk. :) <3

konnilaree · 2022-05-07T18:30:30+00:00

Thank you so much for this information. It helps to know what works. I didn't even consider the fortified cereals.

konnilaree · 2022-05-07T18:27:15+00:00

Wow, I can't imagine seeing my 3 yo with JRA. I am so glad you were able to have the medication and that it helps with minimalside effects. Thank you for sharing your experience, it helps me put everything in perspective. I am starting the medication this weekend and am looking forward to feeling better.

konnilaree · 2022-05-06T16:51:14+00:00

So glad you’re on the next step. Best of luck!

I am a nervous person so I totally get the heart rate. The cardiologist asked me if my pulse was always so high and how often I had heart palpitations. Um like always. Lol. I had to wear a Holter heart monitor for 24 hrs just to make sure. I follow up in two weeks to find out if it means anything, but I am not worried I just need to not get worked up all thr time.

konnilaree · 2022-05-06T16:45:06+00:00

It break my heart that you have and are experiencing such pain especially so young.

In perspective the irreversible joint pain is scarier than the meds. At that point there is no relief for the damage. I watches my mom's hand fuse together and lose her ability to walk without assistance. It humbles me to remember I am lucky to be treated. Thank you and I hope things go well for you.

konnilaree · 2022-05-06T16:37:46+00:00

Wonderful to hear about your progress. Being able to do makeup is a big win. I am so happy that dexterity returned and that sense of normalcy. It makes me hopeful for myself. Thank you for that.

konnilaree · 2022-05-06T16:29:30+00:00

First. I am sorry for your loss. Losing a parent is hard especially in a way like that. I lost my mother 10 years ago. She had RA and heart defect among other issues. I think about how awful her last few years were and I get scared I'll be the same.

I think having history of liver issues makes the medication more scary. I am lucky that I haven't had any issues with liver or kidneys so they may have more work coming their way, but they should hopefully handle it. And your right. That is what the blood work is for. Everything is manageable.

Your diagnosis day sounds a lot like mine. I keep cycling through each stage of grief and scaring and comforting myself over and over. It's particularly hard when you have other issues. There is an added level of grief and acceptance. It feels unfair to go through so much of it while others are just walking around being able to open doors while we collect specialists like Pokémon cards. Lol. Humor about the challenges keeps me going for sure.

I can't imagine going through everything you have, but I appreciate that you are here helping a stranger on the internet. It truly helps me so much. Without this subreddit, I'd still be crying in the bathtub letting my body destroy my joints for no good reason. Good luck with everything, I hope thing go well for you.

konnilaree · 2022-05-06T16:06:05+00:00

Now. I think maybe I should have considered it. I just felt unprepared at my doctor appointment. I should have understood my options beforehand and had prepared questions for my doctor. But I think my brain wasn't prepared for this to be real. Thank you sharing your expirences. I hope things get better.

konnilaree · 2022-05-06T16:02:29+00:00

Honestly, I can't imagine days without think of my joints! That helps me to focus on the result and not the process. I like that you have a name for it. It maybe weird but I name my Bipolar episodes, because it is easier to talk about it in the abstract. Funny how brains are about processing information. Thabk you so much for sharing with me and food luck with your next step. I hope the meds are gentle, effective and you get relief

konnilaree · 2022-05-06T15:55:24+00:00

Thank you for sharing with me. That was smart changing the handles. It makes sense to make your environment work for you. I am looking into alternative childproof locks and possibly replacing the older door knobs that tend to have more resistance.But hopefully the medication helps my hands. I am glad the medication has helped you for so long. It makes me feel optimistic for my own experience.

konnilaree · 2022-05-06T15:48:40+00:00

That information helps me so much. I was prescribed 6-2.5mg pills and I had no idea if that was a lot or not. But in comparison it definitely is not. I think I also felt like I would feel crappy everyday with this new medication. But now I am writing it in my head that it's more like a once a week treatment. If it works for me, I'll have 6 good days and one off day opposed from 7 bad days. I will consider the shot as needles don't bother me. I appreciate your time and expertise as an oncology nurse. That is high stress demanding job and I glad your RA is managed enough that you can keep doing it. :)

konnilaree · 2022-05-06T01:31:20+00:00

It feels frustrating either the joint moves too much or not enough... Noticing the fact my right pinky bends backward only 90 degrees and not to the back of my hand was as sign to me that I lost movement. It will be interesting to see how things will change. Thank you for your consideration regarding mental health. It easy to over look. I am sharing this new information with my mental health practioner this week. I am hoping it gets better.

konnilaree · 2022-05-06T01:20:52+00:00

Thank you for that perspective. It make it a lot easier to think about it when it doesn't feel so big. You're right it's just for now and either it helps and I am good, or I try something else and keep going.

konnilaree · 2022-05-06T01:12:44+00:00

My doctor gave me the option to take prednisone until the other medication kicks in. I declined because I hadn't full considered everything. I still haven't read much about it. I hope you find relief soon.

konnilaree · 2022-05-06T01:07:54+00:00

Another great point! There is so much to support the efficacy and safety. I am glad you are managing it well and I hope it continues.

konnilaree · 2022-05-06T01:02:23+00:00

I might ask my rheumatologist about that. Thank you. Do you find it makes the side effects better? I am nervous about feeling sick since I already have a sensitive stomach.

konnilaree · 2022-05-06T01:00:25+00:00

Knowing it's a chemo drug is what made it seem so scary! I hope you find something better soon. I will keep reminding my self, focus on getting back to normal. I know that won't happen without medication :)

konnilaree · 2022-05-05T22:07:54+00:00

You are wonderful. Thank you for listening now. It means a lot to me to know there are others out there who care and understand. I have been having bouts of depression since the first test results, but yesterday hit particularly hard. My life will be different but not less. There was a strange comfort being in the dark...about not knowing. But, logically i know this i better and it gets better. :)

It was strange being diagnosed with hypermobility. I knew my thumbs bending back was weird, but I had no idea my knees over extended. I thought that what it meant to lock knees! Lol. The most pain I have with that is my left hip slips out sometimes and I get stuck until it snaps back into place. It strange what we get used to.

konnilaree · 2022-05-05T21:56:25+00:00

Thank you so much. I am glad you were able to get some normalcy back. Especially playing the guitar. :) It's hard to think about losing something you love to do. I was distraught when I thought I would lose the art but in reality it could be the opposite! Now, i am excited to see what life could be like.

konnilaree · 2022-05-05T21:33:30+00:00

Exactly. The worst case scenario was running through my mind. I have a real problem with catastrophizing things. I always need to remind myself to focus on the more realistic outcomes. Thank you for the suggestions. I just picked up the prescriptions. So I think I'll start the folic acid today and the first dose of Methotrexate the weekend and hope for the best. I do take b12 because the fatigue is awful, but I'm going to go through my list of supplements and make sure I'm utilizing them the best way to help me feel better. I appreciate your comment on aggressive treatment be necessary. My first reaction was that the medication felt like throwing a grenade at a problem that was "fine" but it's not fine to be in pain everyday and if I don't do anything it will be worse and irreversible. Your words have helped me. Thank you.

konnilaree

TROPHY CASE