Feeling down

[LilyPony]

Just got to vent on here because hubby's just running out of patience for my mood swings lately. I got impatient with my quest for a JH appointment and called. I was told they've received my records and would get back to me soon. They're scheduling in May right now so it's going to be a while, but I knew that already. Somehow I thought possible neurological involvement was going to bump me up in priority but I'm not in a life threatening situation and cannot expect to be treated as such. My GP didn't want me to waste my time with a neurologist here because of the %$#@ every new doctor is giving me trying to disprove any sort of vasculitis. He told me to go up to 35 mg pred (from 30) and see if it helped. My poor little pinky fingers are still totally numb but thankfully function just fine, and numbness on ring fingers is just intermittent now. Nose bleeding has stopped which is exciting but today both ears are hurting terribly. I know this is always going to be a roller coaster. I've just always had it in my head that the roller coaster was for other people not me. It was such smooth sailing for so many years. So now here I am all moody and crabby about me me me while so many other people have it so much worse than I do. Yeah, I know it's the prednisone but it still sucks to feel this way!

[vdub]

Yeap, been there done that.... Very frustrating, but it does get better. Hang in there!

[drz]

Just got to vent on here because hubby's just running out of patience for my mood swings lately. I got impatient with my quest for a JH appointment and called. I was told they've received my records and would get back to me soon. They're scheduling in May right now so it's going to be a while, but I knew that already. Somehow I thought possible neurological involvement was going to bump me up in priority but I'm not in a life threatening situation and cannot expect to be treated as such. My GP didn't want me to waste my time with a neurologist here because of the %$#@ every new doctor is giving me trying to disprove any sort of vasculitis. He told me to go up to 35 mg pred (from 30) and see if it helped. My poor little pinky fingers are still totally numb but thankfully function just fine, and numbness on ring fingers is just intermittent now. Nose bleeding has stopped which is exciting but today both ears are hurting terribly. I know this is always going to be a roller coaster. I've just always had it in my head that the roller coaster was for other people not me. It was such smooth sailing for so many years. So now here I am all moody and crabby about me me me while so many other people have it so much worse than I do. Yeah, I know it's the prednisone but it still sucks to feel this way!

Yeah, I think we all would rather watch than ride the roller coaster, but that choice isn't usually ours to make. We have to learn to enjoy or tolerate the ride and it can be rough at times but like roller coasters they go up as well as down if we can just hand in there long enough things usually change. Enjoy the smooth parts when you can and hang on the best you can when the ride is bumpy.

Ask you husband if you can trade roles for a while? Tell him to be moody for awhile so you can snap at him cause that might help you feel better!
Sometimes humor helps those rough moments.

[Sangye]

drz, that's great advice about the rollercoaster. I've found that the less I try to "fight" Wegs and its complications, the easier the ride is.

LilyPony, this might be a good time to start seeing a therapist. It can help you figure out how to channel your anxiety and anger without hurting others. You're stuck with pred right now, but you don't have to be stuck with the way you deal with it.

As far as your JHU appt goes, once the doctors do a thorough review or your records they may decide you need to be seen sooner than May. You can trust them to make the right decision.

[Chris G]

I'm so sorry you're feeling so frustrated. It's SCARY when a new symptom pops up. Our friends and family members try to understand and be supportive, but they can't TRULY understand the frustration and desperation we feel sometimes. That's what makes this group such an awesome place.....we all understand each other perfectly.

I hope that Sangye is right - maybe they'll review your records and bump you to the head of the line! Fingers crossed.

[LilyPony]

LilyPony, this might be a good time to start seeing a therapist. It can help you figure out how to channel your anxiety and anger without hurting others. You're stuck with pred right now, but you don't have to be stuck with the way you deal with it.

Yes, totally agree. I'm not an angry person, more of a pouty crybaby type but know I"m causing unnecessary stress on my family who has to see me like this. I had a long talk with an friend today and we decided that I needed to speak with someone and might need some sort of medication to help balance me out a little.

It's so hard being a control-freak and having to deal with losing that control over both my health and my emotions. Two toddlers in the house and a hubby who works long hours don't help either. So thankful for everything I do have though!

[delorisdoe]

It's so hard being a control-freak and having to deal with losing that control over both my health and my emotions. Two toddlers in the house and a hubby who works long hours don't help either. So thankful for everything I do have though!

This is EXACTLY how I feel as of late. I dont think I waould go to a therapist though. Id feel even more like a hypochondriac...

[LisaMarie]

I feel that way alot lately ...going to see a therapist today to try and get some perspective before I divorce my husband who is my jelly fish and has his head in the sand again since I do not look sick...like i did before and am weaning off the O2...therapy is good...it gives you a person on the outside to vent to and give you a different prespective....I usually mediate and pray but lately things are just getting too crazy...water leak in the basement...insurance won t cover ...children that won t help out in the house except whe you loose it ....tapering and pred and being scared to death......that wg will rear it s ugly head ...and not being able to do what I used to do...especially with baseball season started for my boys...I hate this roller coaster...matter a fact i hate all roller coasters...so to therapy I go

[Kathie28]

I hope you get an appointment soon. I am so thankful that my meds seem to be working for me now but I remember all too well just a couple of months ago that I felt like I was falling apart and that I wasn't going to be able to raise my toddler. It was so frustrating waiting to get answers and the necessary help. It's hard not to get down sometimes with this disease. Couseling can always be helpful during rough times to help get us through. As much as we love our families it is very hard for them to understand and we need support from other sources.