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jaci121
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 5/3/2008 11:01 AM (GMT -7)   
I have mixed mctd, and live alone in the countryside. Alot of days i feel too ill or tired to go out or persue hobbies. I find it hard most of the time just coping with the housework and looking after my dog and cat. I get really depressed about my situation, and sometimes i wish it would all end. I don't want medication, i have tried lots of anti depressants, and they made me feel worse. Looking for others to share their ways of coping, if any. Also i would like to start a relationship, i don't want to be alone for the rest of my life. But i hate the way i feel, and i dread the thought of being and looking ill with someone, and wonder who would put it with a sick girlfriend when he could have a healthy one. I know its negative to think this way, but it feels true. Anyone who's not as negative a me or in a happy relationship i would like to hear from you too.
Thanks
jaci

(Jaci . . . I edited your post just to add a title so more people would see it)

Post Edited By Moderator (AlwaysRosie) : 5/3/2008 12:24:43 PM (GMT-6)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/3/2008 11:23 AM (GMT -7)   
Welcome to the forum Jaci!!

(((((((((( Jaci )))))))))) Hugs to you!!! You have just taken the first step towards actually feeling better. Its great when you can actually articulate what you are feeling. Your post will likely help others too . . . who have similar feelings but are net yet ready to put them into words.

I have periods of feeling pretty well and then periods of needing to spend lots of time in my recliner. I actually use a laptop compute and I spend some time online most days. My favorite way to cope with my down times (flares) is knitting and crocheting . . . . my "recliner sports". I started working on a little project one day and just go t addicted. I have found lots of great patterns, information and tutorials online. I also started attending a local Senior Center on occasion (most Senior Centers offer membership to anyone 55 and older or anyone disabled). There are other knitters and crafters there as well and its a great way to get some help with projects too.

I also like books on tape and I borrow them from the local libraries. Sometimes I listen to a book while I'm knitting or doing housework. Its a great mental escape.

This forum has been a real God-send as the members are so friendly, knowledgeable and helpful.

I hope you make some good friends here!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 5/3/2008 11:25 AM (GMT -7)   
Hi Jaci,
   Welcome to the forum. You have come to a great place for support. It's so hard to cope with these diseases and can be even harder on our loved ones. You will find much helpful advice and kindness here.
   We have alot of members here who have wonderful marraiges and relationships. I live alone also but, I'm probably alot older than you and have gotten settled in my ways... :-) .
   I'm fortunate to be able to work part-time so that keeps me going. I try to find things to occupy my time otherwise. We have a chat room here and a few of us go there often to talk about anything and have a few laughs. I also like watching a good movie, reading, and writing when my brain fog allows it..lol. Sometimes I force myself to go out and shop with a friend and end up having a great time.  I'm sure the others will suggest more fun things to do.
   I do get depressed, as we all do at times. When this happens, I let myself have a pity party and shed alot of tears for a couple of days. Then I start thinking I could be in alot worse shape like so many others and snap out of it.
   Know that you are not alone in this and we will help you in anyway we can. Please take care and keep us updated. You will be in my thoughts and prayers.
                                                    Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/3/2008 1:07 PM (GMT -7)   
I cannot take antidepressants due to very rare reactions with my brain chemistry. I would have loved to avoid other meds, but I found I do much better when I take medications to manage my disease. I take naps when I need them and try to avoid over doing it. I am taking classes online as a way to keep my mind busy and avoid boredom. You might want to consider that option since it is felxible.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/3/2008 5:24 PM (GMT -7)   
Hi Jaci, welcome. This is a great place filled with wonderful, caring, supportive people and we're glad you found us!

I work 32 hours a week and have for about a year now but before that I was full time. Does it wear me out, YES, do I wish I could stay home some days, YES but I know if I did, it wouldn't be good for me. Other than work, sunday school, hubby and 12 year old daughter I have a pretty quiet life. Right now I am in a flare so I am more exhausted than normal but I know this too shall pass and my family is very understanding.

I have been married for over 20 years, 15 of those years I was very healthy and active. I did everything for my family... cook, clean, laundry, shop, etc and now I can't. My hubby has been great through all this, he has picked up the slack for me. Now I am able to do more than when I first got sick but I still needs hubby's help.

I don't like taking all my meds but I know each one has a purpose and if I don't take them I cannot function, so I take a hand full every night after I eat. Do you see your doctor on a regular basis and does he/she have you on a good treatment plan?

Have you ever thought about volunteering just a couple hours a day/week? Hang in there and vent any time! Take care
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/4/2008 7:46 AM (GMT -7)   
Hi Jaci and welcome. I'm sorry you have been so sick. These connectiv tissue diseases are so hard on us both physically and emotionally. I know the two are so closely related for me - if I'm feeling physically better, my mood is better, if I'm flaring, it's harder to stay positive. I think there is a lot of loss and grieving that happens when you get sick. For me, I had to give up things I loved and that were a big part of my life. I felt like I had been shattered into little pieces and had to start all over again. I do have to say that after more than four years later, I have found new things I love to do that take less energy, so I do want to give you some hope.

Regarding medication, I never took meds before I got lupus and really hated having to start taking a bunch of meds, but finally I found a good combination that is working pretty well for me most of the time now. I'm not back to where I was before I got sick, but most days I can be up and around and do things with my kids and have a pretty meaningful life. There was a long time that I felt I was watching life pass me by from the sidelines. I'm another person who can't take antidepressants because of my reaction to them, but there are lots of other meds used to treat these illnesses. A lot of them have the potential for some nasty side effects, but others are less toxic. There is something a friend of mine said to me when I was debating starting a new med - she said "If there was something out there that might help me feel better if I was feeling that sick, I would try it."

I am glad you found this forum - we have wonderful and supportive people here. It's so nice to be here among other people who really understand what it is like to live with chronic illness everyday.

Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



jaci121
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 5/4/2008 9:13 AM (GMT -7)   
Thankyou everyone for answering my e-mail. I really appreciate it. Most of the time reading your messages i had tears in my eyes, not just for myself, but for all of you as well.

I am feeling frustrated and depressed right now, not to mention lonely. I have been ill since i was 22, and i am now 41.I loved working, but feel too tired most days to even tidy the house and do the shopping. I am existing, but not really living.

I know its a struggle for a lot of people, somehow i thought i would cope better than i do.

I do take medication for the illness,prednisolone and cellcept, but i can.t say i feel much better for it, apart from less joint pain. Last year i had kidney problems, then my colon ruptured, so things seem to be progressing. This year i'm having breathing problems. I have just had my heart checked, still waiting on results, and next week i'm having my lungs checked.

The stress and depreesion i feel at times becomes unbearable.I have never had any support from my family, and my fewf riends i have left don.t really understand, and usually tire me out more.

If i tried working again i would have to earn a lot of money just to get by, and i don.t think i could manage that.

Thanks for all your ideas on hobbies and crafts and online studying, hopefully with summer on its way i will start to feel a little better. I do have my own kiln and wheel at home for making pottery, and keep thiking i would like to start that again, but i rarely have much energy, and when i do, it goes on the things i need to do.

Thanks again everone, you have been so kind in sharing your stories.

jaci

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/4/2008 10:57 AM (GMT -7)   
(((( Jaci )))) it's hard when you don't have family and friends to lean on, just remember you have all of us and we totally understand what you are dealing with on a daily basis.

Have you talked with your doctor about how you are feeling? If not, tell him/her and don't hold anything back, they really need to understand how this disease affects us and there may be a different "cocktail" of meds to help you. I know for me, plaquenil really helped with my fatigue and energy level. Have you ever been on it before?

You sound so sad, I wish there was something I could do for you. I do think you will like it here. Hang in there, you are in my thoughts and prayers.
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1548
   Posted 5/4/2008 1:18 PM (GMT -7)   
Hi Jaci. I was married twice (don't want to try that again!) and now live with my boyfriend.  We met when I was 42, my pets and I moved into his house when I was 44. Lupus symptoms started a few months after I moved in. He has never been married or have a live in- I move in and start complaining of depression, pain, neurological problems and get diagnosed with "somatiform disorder" (crazy). I kept complaining and searching for a diagnosis. I attempted suicide once and will never try that again! (Mental health hospitals really, really suck.) Now, the moment I'm feeling suicidal I call my psychiatrist and get my meds adjusted.  My boyfriend stays steadfast at my side even when I whine that he could do so much better. Sooo, don't think that no man would want you. Anyway, I sincerely hope you talk with your physician about depression. It's a horrible feeling that can lead to death. Your doggie and kitty would miss you. Also, we develop friendships here on the forum and we are already looking forward to hearing from you again! Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol actonel ambien multi vitamin C flaxseed oil  PRN: gabapentin promethazine xanax
             Better living through chemistry    Donna
 


sits_inthe_corner
New Member


Date Joined Apr 2008
Total Posts : 12
   Posted 5/4/2008 2:00 PM (GMT -7)   
Hey Jaci,

Welcome..,

The others have said so many warm and support things, so I'll just add a few helpful house work tips.

Like you I have a cat and a dog. They used to be terrible under foot when I was trying to house clean. With the joint pain and being sooo tired, that didn't go over very well. Till I realized they could help me. I made little swiffer booties for the cat so he can dust while he's crawling around on the mantal piece and shelves and other places where he runs when I pull out the vacuum cleaner.

I bought a cloth laundry bag and filled it up with the dirty clothes and taught the dog to "fetch" it to me. Up and down the stairs. I also rigged a little harnes for the vacuum cleaner and taught the dog to mush. Now I know it sounds like I put most of the house work on the dog, but lets be fair. He sheds more. And after all a cat is not all THAT interested in doing house work.

Just kidding...thought you could use a giggle. Except for the cloth laundry bag..I find it easier to throw down the stairs (and if gives me something soft to land on if I should fall). It's also easier to drag back up the stairs.

Glad you found your way here.

jaci121
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 5/4/2008 4:51 PM (GMT -7)   
Thankyou all, so much. You are all such lovely people. Pity we didn't all live in the same village.I would invite you all round for dinner (though it would probably be self service)

I have seen my doctor once in the last year about depression, i sat in his office just crying for around 10 minutes. I can't even remember what either of us said i was so down.Eventually he sent me into another room with a glass of orange, to pull myself together before facing the outside world. I felt worse for not being able to controll my emotions.The subject has never been brought up again.

Thanks for your story butterflake, it has given me a bit of comfort knowing you found someone who loves you just as you are. Around the same age also. I wish you all the best in your relationship. Doctors took years to diagnose my illness, and thought i was depressed (which i am ) but i can.t handle anti depressants, for some reason i have felt even more depressed on them. It is possible its because i have liver damage from this illness, or i have some kind of intolerance. One of the immune suppressant drugs made me really ill, and that was after only one dose. I ended up in hospital i was so sick.

The dog and cat story was funny...thanks. I almost believed it for a minute. Wouldn't it be good if they did clean up and meke tea. I.m sure every family would have them.

Hope to jpin some of you in the chat room in the near future.

Evey one of your stories and advice has touched my heart.

jaci

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/4/2008 6:17 PM (GMT -7)   
Hey Jaci . . . sending you a hot cup of tea right now!!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/4/2008 6:41 PM (GMT -7)   
I will offer you some hope on the relationship front as well since I am so blessed in my husband. I was married once before to a horrible abusive man. I became isolated and even my family did not believe me when I tried to ask for help. I had one friend left after he was through driving them all away. She helped me to get away from him and get my daughters out. I was unable to get custody but I was able to make sure he can never see them again and that I can see them. But that is another story. After I left my ex I had no place to go really and no skills. Worse, I had been ill for years and barely had a high school diploma. I got lucky in one thing, within a month of leaving him I went into a spontaneous remission. I also got lucky in the friends my best friend from high school introduced me to. When I had to move again due to stalking one of them, the man I would eventually marry, offered to help me. I moved to a new state and stayed with him until an opening was available in a local shelter that I had been told offered help getting job training and evetually in job placement. It turned out to be a bad situation. Eddie said I should come live with him and look for work with the skills I had picked up from him and the classes I had been allowed to take. I found work almost immediately. But I soon lost my remission and became ill. I had warned him I was not well and had no clue when the problems would return. By the time this happened we were extremely close, actually we were falling in love. He could have cared less his only concern was that I would be okay. There is a lot of stuff that happened in the middle including the death of our son and my nearly dying, but today we are still together. He gave up living in his home town for me, so I could get decent medical care. He even faced down his mother, who hates me, to be with me. He has never blamed me for being sick, he has alway been understanding and supportive. Heck he pushed me to follow my dreams and go to college. Now I am in grad school and about to have a baby. He has made it clear he will do whatever it takes so I can continue my educations. Add to that he adores my daughters and is very good with them and you can see how I can feel blessed he loves me. There are men out there who will love you for who you are not what you can do or what you look like. I was lucky enough to find one. The funny part was I was not looking and had decided to have nothing to do with relationships ever again. We will have been married for 7 years come July and together for 9 years in December. I am so glad that my friend introduced us, in doing so she made it possible for me to know what it is like to be loved unconditionally- something I had never had before since in my family love always comes with strings.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


jaci121
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 5/5/2008 6:35 AM (GMT -7)   
Thanks for the replies, and the cuppa. That was a fantastic story redrose, i am so pleased for you. I have never had unconditional love from my family either, in fact i havn't had much love at all. I think that is my problem. I found it hard to believe anyone could love me while i was well, and even harder now i have illness. I am having some counceling at the moment with a lady who cured herself. of immune disorders. She was ill for 16 years. So i am hoping i will at least improve my mental state.
.
Someone mentioned plaquinel, and that it helped with energy. I did try it a few years ago, but because i get psorisis it seemed to make it worse. I am thinking i might ask to try it again just to make sure it wasn't a coincidence, as now and again the psorisis flares up anyway.

Thanks for sharing your wonderful stories.

jaci

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/5/2008 6:42 AM (GMT -7)   
jaci, with the plaquenil, some people get a bad reaction from the generic (itching) but do okay on the brand name. I don't know if you took the brand name or the generic, but it might be worth looking into it. It doeas take a little while to get into your system.

My heart goes out to you and I'm so sorry you don't have support from your family and that your friends don't really understand. It is a really hard disease for healthy people to understand. Hang in there and know whe are here for you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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