Do you ever want to call it quits?

[ktfabian]

I started writing this in response to Thea's topic about having a good day, and the discussion that started about depression, but though it would be best moved to a new topic.

I'm at that point now - depressed and ready to call it quits for good. I've been very fortunate that for almost 4 years after my last back surgery my Sjogren's was pretty quiet. I had a few flares, but nothing too unbearable. That came to an end with Hurricane Sandy and life has become very hard to deal with. I've told my husband that, if I weren't so afraid that I'd make things worse, I would probably check out now.

Adding to the stress, my husband lost his job last Feb. We lost our insurance and I had to switch to a Medicare Advantage plan.I made it into the donut hole by mid-March this year. The financial strain has been horrendous. We're on the waiting list for a low-income senior apartment, but that could take another 12-18 months. Our house has fallen into disrepair, we have a lot of work to do to get it ready to sell and neither one of us is up to it.

That and other family issues have left me feeling like my body and life are spinning out of control. The bright spot in all of this is that I've found a new family doctor (because of the insurance change) who isn't afraid of my Sjogren's and is willing to work with my Sjs specialist find answers for the problems I'm having. The worst part is the episodes of nausea and vomiting I've been having that last anywhere from 12-16 days at a time. I just had my 5th in 2 years. I don't know if I can do it again.

I had to go off my Cymbalta because I just couldn't afford it and we don't qualify for help. I don't understand how that can be, given that we're living on my disability and my husband's SS retirement. My medical bills have eaten up what retirement saving we has, and my husband is about to lose his unemployment because congress won't get off their butts and reinstate extended benefits. I did find a group called Simple Fill which is helping me get some of my medicines at much lower prices, but I don't qualify for my most expensive drug, Rituxan because Sjogren's is still considered off label use.

I tore my Achilles tendon some time last fall, I have no idea how or when, and tho the tear has healed, my heel is badly inflamed and I've developed bad bone spurs which are interfering with how the tendon attaches to my foot. My foot surgeon injected it again today, #3, but said if we don't see improvement in 2 weeks, he's going to have to go in and clean up my heal and make sure the tendon is  healing right.

I was recently diagnosed with Cluster Headaches after a week of headaches that made my head feel like it would explode and really bad nausea. I'd been told they were regular migraines by past doctors. My doctor started me on a beta blocker and a medrol dose pack, which helped stopped the cluster headaches and the Sjogren's headaches I get, but , I ended up with a very bad case of thrush and I started vomiting. Twelve days and 2 ER visits later, during which I managed to bring up every nausea medicine my doctor could prescribe, including Zofran,  the vomiting stopped with antivert.  I saw my rheumatologist right after puking stopped, and he said it's likely related to my Sjogren's and could be gastroparesis.He's ordered a few tests and hopefully we'll get an answer.  I'm still battling the nausea it and having trouble eating. The upside? I lost the 24lbs. I gained over the winter while my right foot was immobilized.

My body feels like it's been hit by a bus at least twice I wasn't able to get my full dose of Rituxan in January because of repeated infections. Both doctors feel I would benefit from IVIG, but we've been trying for 6 months to find a doctor in my area to oversee the treatments. Otherwise, I'll have to have someone drive me 3 hours to Philly for the treatments several times a week. Once we're sure I can tolerate the IVIG, if my insurance approves it, I might be able to administer the IVIG to myself at home, but we don't have a doctor or insurance approval yet and I'm not holding my breath. My last insurance turned me down, even with the Sjogren's and an IgM deficiency. I now I've developed an IgG deficiency.

Sorry to go on and on, but I'm really, really tired of all of this. My husband tries to understand, but he really can't.

Anyway, I'm trying to figure out what to do or where to turn next. If anyone has been in this spot, can you tell me how you got past it? I need to get my life back under control.

Thanks for listening if you've made it to the end of this long post,
Tracy

[irish]

Oh Tracy, I am so sorry that you are going through this. I remember when you went through a couple of other rough times, but I don't know if they were as complicated as this one. I think as we age we have more issues and they wear us out faster. Please do not do anything to harm yourself. You are worthwhile and there has to be some hope somewhere.

I would think that it is time for you to see a counselor and see if they can't get you on an antidepressant again and also get you hooked up with a company that will supply you with free antidepressants and maybe some other free drugs.

The one thing that upsets me the most about all the suffering people go through is the fact that in this day and age we don't see people getting together and several families living in one house. I know it is hard to do this, but in the depression they did this and it helped to have several families sharing the bills. If you stop and think about it is really is crazy the way people in this country have gotten so used to living in big houses with big payments and high taxes. In reality all we need is a roof over our head and a place to feel safe. Sorry if I digress.

WE have had several people on here go through what you are and I know that others come here with some ideas. I know that oneo should always seeks out social services in the community and see what can be derived from the local government and then also the state and federal.  Please keep on posting and checking out places for help. I know if you get back on your antidepressant you will have a somewhat better outlook and ability to deal with all the crap that is happening. Please know I am thinking and praying for you and your circumstances.

Have you ever thought of calling someone in politics and telling your story about the insurance. Maybe your congressman could help you. Irish

[Joe S.]

I know that my point of view is different. First, get treatment for your depression.  I use cognitive behavior therapy.  "Feeling Good" by David Burns can help with this if you do the exercises. I also see a shrink once per month.

While I do experience severe depression, I do not believe suicide is a solution after reading "Life After Life" stories. This often puts me in a more difficult place mentally as I want the pain to end but death is not the end of pain. I have had to learn techniques to manage the pain. Often I has taken months or years to manage a specific issue. You can manage your pain.

Finances are often a contributing stressor related to my depression. I came out of the military near the end of the Viet Nam war with extreme PTSD. My work record has been very spotty to add to our financial stress. Then all of the doctor visits, tests, and medications have added to the financial stress. I have to keep reminding myself that like gas, this to will pass and I will feel better.

[Thea]

As a Canadian, I don't understand your medical or benefits system, so have no advice there. I cannot imagine having serious financial issues along with all you are suffering through. It's hard enough for us--because I can't work at the moment my DH had to come out of retirement, and my meds and special stuff sure do add up. H

It seems to me that your depression is a natural and normal response to a totally rotten situation. I think you should be frank with your doctor about how desperate you feel, and ask him/her for advice on where to get help.

As for the house, I wonder if Habitat for Humanity could help you? I know they normally build houses, but maybe they would have a work party to help you fix up yours? Or perhaps a local service organization could help? I remember when I was a kid my dad was seriously ill, and our house needed a new roof. The local Oddfellows Lodge got together a work party and did it.

I am glad that you do at least have a partner, and you can face this together. While you are waiting to get some answers and solutions, try to find a little joy in the small moments. I know that sounds trite and Pollyanna, but I do believe it can help.

Many hugs to you. Remember all your friends here, and do not feel alone.

[Carolina]

Oh yes Tracy,

I want to call it quits, but there's no one to take my resignation!

I would think there must be some form of Affordable Care Act insurance that would work for you, or that you are eligible for Medicaid?

I can get so worked up about medical care availability, and I've done everything in my power to make medical care available to everyone, so your situation breaks my heart.

Unfortunately my broken heart is no use to you at all, Tracy.

The companies that make IgG for infusion will work to insure that you have it, once you are considered to need it by your medical team.

But how do you GET a medical team without medical care? 

I can't go there....  It is so unfair and there's nothing I can do.  Right now we have a campaign worker living at our house, who is working to keep our Senator in office in Washington, to support universal medical care....that's how strongly we feel about it, Tracy.

But that doesn't solve your problem.

Hang in there.

Hugs,  Elaine

[quietdynamics]

Tracy,
There have often been times I have wished someone would just take me out of this misery.. meaning those long periods of symptoms, when volleyed about, looking for answers: then putting answers on the 'back burner' in favor of relief.. to just be able to catch my breath.

A debilitating symptom.. then finally relief via treatment (more meds.)

Then the sudden appearance of a 'new severe symptom".. the chronic headaches for months was one of "those' times for me.
I actually envied pets that could be 'put down'.. sigh. I have never shared this before.  It is simply how bad the head pain was.
Anti-seizure meds finally helped with the headaches, which for me where not cluster.

Financial worries, loses, family obligation..  feel like treading water.. and it is not my water.
This is cold ocean water, and I prefer something more soothing and gentle. 
We are tired.. and want to float.. not be hit by frigid waves.

I have support through a therapist, a nurse practitioner, under a Psychiatrist MD. She treats a number of pts with autoimmune.
Generic for Cymbalta is DULOXETINE  Works just fine.
Medicare should be sending you monthly prescription statements..  they make suggestions on the sheet for generics (to save money and co-payments. I got a call to use their prescription ordering through the mail for 90/day supply to save more) 

Tel # for National Help Resource Data is #211 or http://www.211.org/

Life issues unmet.. cause anxiety.  I keep everything to the number '3'. 
I have a very high chance of accomplishing 3 things. So high rate of daily success = I feel better and more productive.

Sit down with husband and do a written reality check list.
Really look at the home you need to sell with buyers eyes. Get rid of the excess 'stuff' and have a 2/3 realtors come over.
Let the realtor advise you realistically. Spring/summer market has parents w/children who want to be settled before school begins.
Some buyers prefer to do their own work..then pay for someones else taste. (That gets you out from the mtg/taxes,upkeep, etc)

I find we need to go for a walk or a car ride .. something to get away from the home. A 'we' time. Cell phones off!
The home is/has become the place of medicine containers, calender with appts,, legal papers, bills,  phone calls... people pulling at us.
That we could easily lose ourselves.. our feelings of 'just the two of us'

And at times I do what I refer to as 'run away from home' for the day.
I leave, turn off the cell. And go out.  Because I could easily lose me. 

Try the list of '3'  .. weekends are OFF.

"Rituxan® (rituximab)  The patent on rituximab does not expire until 2015,   Updated.
.. despite this fact, other companies, including Boehringer Ingelheim [4], Stada Arzneimittel and Gedeon Richter [5], are also reported to be working on biosimilar versions of the drug. iBio, self-proclaimed leader in the plant-made pharmaceutical field, also announced in October 2011 that it had produced rituximab in non-transgenic green plants, paving the way for lower cost production methods for biosimilars 
http://gabionline.net/Biosimilars/News/Sandoz-s-biosimilar-rituximab-on-track

[ktfabian]

Thank you, everyone, for the kind words and great suggestions.

My husband and I sat down last night and again this morning to talk about these issues, most importantly, my depression. I will call my doctor's office for an appointment when she comes in this evening (she teaches at a medical college that opened about 4 years ago in our area). And I'll ask for an antidepressant before I see her. I've done really well with Paxil in the past. I know it doesn't have the pain relieving part, but at least I can afford it.

One of the things we decided this morning is that we need to make a list of all the things we can reasonable do between now and when we get the apartment, most likely sometime next year, to make the house more attractive to buyers. My younger son has said he'll help out where he can, but between a full time job, two kids and a third on the way and his commitment to the National Guard, I don't expect he'll have much free time. My oldest has also said he'll help, but he's fighting his own depression demons, so again, I'll be happy for what help we can get but won't  let myself expect too much and then be disappointed.

Joe, I used to think I couldn't commit suicide because it does go against my beliefs, but 22 years of this has just taken it's toll. I know when it comes down to the actual act, I probably wouldn't be able to go through it, but sometimes, it just seems like the only way out. It's not just feeling sorry for myself, but I see all my husband had gone through and continues to goes through to try to keep us afloat, and it breaks my heart. He did just set up a meeting for Friday with the gentleman from church who has counseled people who are in our financial position because of medical hardships, and we're hoping he'll have some good suggestions for us.

I'm actually having my first of what will probably be 3-4 yard sales this weekend to start selling off things we don't need. Our town has it's city-wide yard sales this weekend, so there's been a lot of publicity and there's always a lot of traffic. I'm also putting my own ad in the paper because I have a lot of handmade crafts and craft supplies to get rid of that aren't usually found at these sales. I don't expect to make tons of money, but every little bit will help.

Thea, finding a bright spot doesn't sound Pollyanna-ish at all. My bright spot is my grandchildren. We had to fight hard to be able to see them...my daughter-in-law cut us off at first. She turned me away from the hospital the day my granddaughter was born, and when we finally saw her the next day, she wouldn't let me hold her. My son adopted her son when they got married, and she had it stuck in her mind that we would not love our grandson as much as we would our granddaughter.
We've finally gotten past this hangup, for the most part, and I treasure every moment I get to spend with them. We were just there for Mother's Day and my grandson made Mother's Day cards for  me and his other Grandmother for the very first time. It's precious and is front and center on our living room entertainment center, along with the clay birthday cake complete with crayon candles he made for my husband who spent his birthday last year in the Progressive Care Unit of our local hospital with a very bad bleeding ulcer.

I plan to spend today working on my granddaughter's birthday present. She'll be 2 tomorrow and loves Disney anything, so I'm making her a princess costume similar to the ones worn by the Disney princesses.

Life doesn't seem quite as bad as it did last night, and again, I thank you all for your responses. They really help. My husband actually works for Habitat for Humanity about 10 hours a week at their ReStore, where they sell building supplies that have been donated but can't be used in the houses they build. I'm going to call him now and suggest he speak to his manager about any help they may be able to provide, or if they know of other groups that might help.

I'm off to make a princess outfit, you've all made life seem a bit easier to handle.
Thank you,
Tracy

[warmwaters]

Glad to hear you've found some things to help you move forward. Just read this thread now, and I'm sorry at how bad things feel.  But you are finding some ways to move forward.

We're in the process of moving, and some days that means I pack one box a day, because that's all I can do. But I try to pack at least one.

I have a friend who says "Getting old is not for the weak". Boy is she ever right! 

I hope your granddaughter enjoys her new outfit.