Will things get better ?

[Pete]

You should be able to get hemastix at the drugstore. If not, they're available on Amazon.

I take my vitamin D as a combined calcium/D3 tablet at breakfast and supper time daily. If you've been on high dose pred for awhile, you may be developing osteopenia or osteoporosis.

[mrtmeo]

mrtmeo, thanks for the advice about prunes and osteoporosis. I hate prunes so did a quick search to see which other foods are high in boron. Came across the following website - Boron | Boron Rich Foods
Raisins and nuts are very high. Just need my Dr to prescribe some Cadbury's Fruit & Nut!

Here is a link to the study details.
Prunes May Prevent and Reverse Osteoporotic Bone Loss | Natural Medicine Journal

[Carmen11]

Thanks ! I'm getting prunes ASAP !

[Jayne 14]

Welcome Carmen
This site is amazing , help & advice from people who totally get / understand what your going thro
Whenever I feel odd / low / weird I come here & learn its our crazy illness
I'm heavier too due to the pred - which I find hard
Prunes will help too if u get constipated too !!!
You are not alone xx


Sent from my iPad using Tapatalk

[Carmen11]

Thank you Jayne , I can already say I feel a lot more sane knowing I'm not alone. I know my family loves me but they seem to think I'm just complaining to be the center of attention. They have no idea how hard this is and much how the side effects of the meds contribute to everything. I know they have their own problems and work , etc, etc, but sometimes they are so hurtful with the way they respond to me. I don't wish this is anyone but sometimes I wish they could step in my shoes just for day.. then maybe they'd realize I'm not exaggerating. I'm single and don't have a partner and my parents are deceased . I have three sisters who are all married and they were there EVERYDAY when I went through my hospitalization , but now that I'm home it's like they think I'm better..and just dragging this on .

[Jayne 14]

My situation has never gotten as bad as I C U / thank god , but over & over you hear people on here saying all they get is " u don't look sick " so I'm not Suprised u feel like that
But this is a tough tough road to follow - so - don't be so hard on yourself
I'm wide awake - horrific heartburn - feeling sorry for myself . Truly I hear you - we don't drag it on for the fun !!!!
Hugs x


Sent from my iPad using Tapatalk

[Debbie C]

Hi Carmen,well now you have a "new family" and believe me we totally get it. Pred can be our best friend and our worst enemy. Sorry to hear all you went thru but thank God they didn't have to go through with the funeral.I hope you have drs. that are highly experienced with wegeners. This site is worldwide,so there is always someone on here if you ever need to talk,rant,cry..whatever. Oh and by the way..things will get better

[Carmen11]

All of you have given me hope .. something that I had let fade , but I feel validated now and realize I should have became a member sooner . Thank you soooo much !

[Carmen11]

Why are you having heartburn ? About a few months ago , I had to have my gall bladder removed , it all started with severe heartburn , it turned out I had stones , so they ended of removing my gall bladder. Hopefully yours isn't stones . I'm sending you a virtual hug and I hope you feel better asap !

[annekat]

Welcome to the forum, Carmen. Your initial severe episode with WG was a little worse than mine, though I did have severe lung involvement which was cleared up pretty fast with oral CTX. I have not had any collapsed lungs or kidney involvement, so far. We never know what could happen in the future. I've had a couple of minor flares since I was dx'ed in 2011 but they were nothing like the original severe episode. What we have in common is the sinus and ear involvement, which does have a tendency to go on for quite awhile, especially if damage has occurred to those structures and to the eustachian tubes that connect the ears to the back of the throat, below the nasal cavity. I'm doing a lot better overall but still have some issues with dizziness and the ears' inability to drain and I have probably permanent hearing loss. To answer your question, as the others have said, YES, it gets better, and it takes longer for some than for others. Every case is a little different. Just keep reading the forum, asking any questions or sharing experiences, and searching the archives, and you will learn a lot. This forum has been a sanity saver and possibly a life saver for me and I'm sure others would say the same thing. It is a first rate group of people, and I'm glad you have found us and joined us.