sick and tired of being sick..

dawns71

New Member

Joined : Jul 2010

Posts : 1

Posted 7/4/2010 1:25 AM (GMT 0)

Hello all.. I am new and will try to keep it brief..but i have no where else to turn.. I can relate to almost all of the postings.. but here is my story, and i so far feel like a freak for being sick with so many freaky diseases!!

PCT (phorphyria cutania tarda)

HS (Hydradinitis Sup..)

MCTD (Mixed connective tissue disorder)

Raynaud's syndrome

Vertigo

Mild Lupus

Asthma-breathing problems

Severe Depression

.. many other symptoms which i have no diagnosis for yet..

... I am only 38yrs old.. and every week it seems like I am experiencing a new symptom or disease that they tell me is not common... when is enough??? My family is good with most of it.. but my hubby and kids seem to forget that i get sick sometimes.. how can I remind them that just because I look ok.. I may not be ok??? I am sooo depressed because of my face and the physical changes that my body has undergone... I sometimes wish I could crawl into a ball and just fade away..... I cry alot and my doctors just seem to treat me every six months and send me on my way.. I am at a loss.. please tell me how any of u handle being thrown wierd and rare diseases that no one thinks of!!!!! ... i really need help..

dawn

Jenny S.

Regular Member

Joined : Oct 2007

Posts : 80

Posted 7/5/2010 1:57 PM (GMT 0)

Dawn, I can 100% relate to your posting. I've had Lupus for 10 years & always come to the doc with new symptoms that are just part of Lupus. I'm very much a planner & like to map out my fun activities far in advance - but frequently have to cancel at the last minute when I wake up feeling sick & tired. I do take my meds & follow doctors' orders, but there are times I just do what I want despite the consequences. I'd rather live my life how I want & to the fullest rather than missing out. I hope this is an inspiration for you. Things will get better, I promise!

Butterflake

Veteran Member

Joined : Jun 2006

Posts : 1650

Posted 7/5/2010 11:17 PM (GMT 0)

Welcome to our forum Dawn. In my signature line I have listed major depressive disorder along with everything else. While I was in lupus diagnosis limbo I attempted suicide. Now I realize the importance of taking my anti-depressants and anti-anxiety drugs. Even while taking my meds I recently slipped into depression. My psychiatrist changed my meds and I'm doing pretty well now. I hope you're seeing a psychiatrist regarding your depression and not just your primary care doc. You're going thru a very rough situation now and need all the help you can get. Love, Butterflake

flower woman

Regular Member

Joined : Oct 2009

Posts : 40

Posted 7/7/2010 2:38 AM (GMT 0)

Hi,i have'nt been on the site for a while but could'nt sleep and i can relate to all your symptoms. I've had SLE and APS now for about ten yrs and you never get used to it! There are lots of people on here who have far worse than i suffer however when it gets you down it's hard to get back up there so i log on here and feel thankfull there's others out there who do understand! The constant pain of my illness is waring me down again at the moment and i feel so so tired! Just thought i'd say hi and have a good moan to someone....hope you're having a good patch soon!

jeanneac

Veteran Member

Joined : Feb 2009

Posts : 1930

Posted 7/14/2010 1:19 AM (GMT 0)

Dawn, it isn't easy. Wow, porphyria. That is a very rare and unusual disease. Does anyone else in your family have it? Having this forum is awesome as far as dealing with the illness. If things ever get too bad for me, I will go to counseling. I am in my mid 50's and I feel blessed on the days I feel ok. I really have to get a lot of sleep and through meds I can get some relief. I am lucky that I have a very understanding husband. We haven't been married that long either and I got sick. I don't know what it would be like to be like this and be young with kids. I guess you would suck up as much as you could for them. It might be a good thing! Good luck Dawn.

nasalady

Veteran Member

Joined : Sep 2009

Posts : 1176

Posted 7/21/2010 5:06 AM (GMT 0)

Dear Dawn,

Welcome to our forum, although I'm sorry for the circumstances that bring you here! You're too young to be dealing with so many diseases!

I had an explosion of diagnoses in 2008 and 2009....it seemed like every time I turned around I had something new. Some awful autoimmune disease. Then 6 months ago I was diagnosed with Lyme disease, and some of the coinfections like Babesiosis, Ehrlichiosis, and Bartonella. Now it all makes sense, because Lyme disease can both mimic AND trigger AI diseases.

You have so many diagnoses, and some are AI diseases....have you ever been tested for Lyme disease? I'm not a doctor, so can neither advise you or diagnose you of course, this is just a thought....most people don't realize that Lyme is becoming epidemic in the United States, and they think you only catch it if you go camping or something.

The reason I ask about Lyme testing is that I had just run across a comment about a Lyme connection to secondary porphyria on another board (www.cpnhelp.org/lyme_poryphia_mopping), here is part of the comment:

"Lyme is very toxic to the liver and can damage the ability of the liver to process chemicals. Therefore, that can result in a secondary porphryia (as my doctor explained to me).

Patients with MCS - multiple chemical senstivities, he felt, all had problems with the C P-450 detox phase and would have variations of porphyria as a result.

Some attention was given to secondary porphyria about 10 years ago in the CFS patient population due to problems with the C P-450 pathway.

Therefore, IMO, it's in everyone's best interest to be aware of this and take precautions.

For some, it is hereditary but can go undiagnosed. I was dx with two types of chronic porphyria in '95 - before being dx with lyme and 2 other tick infectionsi in '97. then Cpn and HHV-6 two months ago."

In any case, this is sheer speculation on my part, so please take it or leave it as you wish.....you and your family are in my thoughts and prayers, Dawn!

Take care,
JoAnn

jdrea

Regular Member

Joined : Aug 2010

Posts : 124

Posted 8/17/2010 2:56 AM (GMT 0)

Dawn,

I have 3 special needs children, my hubby is very ADHD and my mom is like a 12 year old who always needs me to make her decisions and my 20 year brother is a drug addict. I am their support system. I have MCTD, depression and now I am looking at a dx of MS. I drive my daughter to school everyday and I have at least one meeting per week with either one of my sons. Then there are all the other school things that require my attention constantly. Not to mention all the housework and cooking. I am not complaining just as you aren't either. One thing that I have learned over the years of dealing with my problems, that makes me feel a little better, is to look at other people's situations, and something I find interesting is that there is always something worse out there. I have learned so much from looking at others problems. Other people's problems have truly helped me see what I do have. I hope that this doesn't sound hard or cold, that is the farrist thing from my heart. On those days that I feel like no one understands me, I think about where I am, where I have been, and where I want to be. I look at each of those angles from someone outside looking in at my situation and I repeat the process with someone else's life. Most of the time, I realize even on our worst days, we are still blessed. We have each other, and yes my family would run me into the ground (not meaning too), but I have them, and for now, I am still alive and I am still willing to do whatever I must to take care of them. And some days, I get the opportunity to help someone else when they are in need. Even if it is just by giving them a smile. I am blessed.

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