Hi, I am new here « Thread Started on Sept 21, 2009, 1:59pm »
Hi all,
I was wondering around and found this site. I am 47 and recently diagnosed with severe bollous emphysema/copd. Until my diagnoses I really didn't have much of an idea I had such severe problems. I was a smoker who had chest colds twice a year. That's how I was diagnosed, I went in for antibiotics for my cold and had a X-ray that found spots. The rest they say is history.
Here is a little about my life the last few months.
My husband had always wanted me to quit smoking. We were married 26 years and from day one he tried and tried to get me to quit. There were times that my smoking caused problems with our marriage, but my relationship with smoking never stopped.
Flash forward 26 years to May of this year. After struggling with yet another respitory infection my husband tried to "lay down the law".... He told me something like..... "You're breathing is terrible, I lay there at night and wonder if you will quit breathing on this night... Do you really want this to be the reason we lose everything including our home because of hospital bills? Do you really love me that little?" Three days after those comments I had my first diagnoses of Emphysema/Copd. The diagnoses just got worse from there and moved onto Severe.
So with my head down in shame, scared to death of my new diagnoses I came home to face my husband.
In the next two months it became evident that I would have to have some kind of insurance to be treated for this disease. (I have none and my husband made too much $$ for me to qualify for any help) I had already started telling the doctors I can't afford that treatment, or those perscriptions are too expensive. The doctor mentioned lung reduction surgery and transplant and I knew I would have to decline treatment because of $$. So I went to one of our friends (who is an attorney) and asked him to help me file for divorce. Understand that this is a last resort. We have thought and thought about this. When I said those vows 26 years ago I meant them. The papers are now filled out and will be final by the end of next week.
I have had a really difficult time accepting all of this.
Our attorney friend told me that I am giving up everything and he wanted me to be sure of what I was doing. You see in order to qualify for medical help I can't own anything. I now am on his retirement, so that if the unthinkable happened to him I would continue to get his retirement... Not anymore. My named had to be removed. I cannot own anything. So my name had to be removed from the bank accounts, car and house titles.. everything. As of next Friday I have nothing. I have worked all my life for nothing. It's like I never existed. I now can't write a check, use a credit card or debit card, nothing.
It's not just those things that have been bothering me. We had to remove our wedding rings. I have not had my ring off for any reason, and now it's in a jewlery box, the tan line and indent is still on my finger from 26 years of wear.
So needless to say I have been am emotional wreck this week.
He left me this note this morning,
Kellie, A ring is just a ring. In time when the initial part of this facade is over we can put back on our rings. A ring says nothing of what is in my heart and my promise to grow old with you. If I am not treating you special enough, tell me. I love you and want you to be sure of that.
He is a special guy and now you can see why we were married 26 years. I am now in the process of applying for social security.
Re: Hi, I am new here « Reply #1 on Sept 21, 2009, 3:06pm »
Wlw Kelly, I dont know what to say after that. Your husband is such a sweetheart that's for sure. A divorce seems drastic tho, is that what the lawyer recommended? I'm gonna be 50 soon, married 32+ yrs. I have no insurance either. I choose paying bills and eating. I am the only one working, hubby doesnt and I have kids/grands and help them out when I can. For meds, there is ADC (alldaychemist.com) that alot of us get meds from. They are located in India and I would be screwed without them. I just got a 6 month order of Advair and some antis to keep on hand and with the shipping it was just a bit over $100. Not bad. There are things you can do that helps , like eating right and exercising that others will be better at explaining than me. Did you quit smoking then? Believe it or not, even at this point, it helps. Read thru the COPD section for tips and stuff and ask questions as someone here will help. Especially look at ImportantCOPD topics Read thru the daily chat too and you'll see that we all keep on going despite COPD. That alone was a huge help to me when I was d'x in 05. Welcome, hugs, and we are all here for you, ok?
Re: Hi, I am new here « Reply #2 on Sept 21, 2009, 3:10pm »
Kellie, that is a sad story and very extreme! Are you going for disability? I received disability with out going through all that and I am 47 also and very severe. I am sure that has put a lot of stress on you and we will help as much as possible. I will not be eligible for medicare for another year but thankfully I had insurance before I was diagnosed. I am also waiting on a lung transplant but who knows when that will happen.
In the mean time, ask your doctors for all the samples that they Can give you. They usually have some and they will help. Also there is a pharmacy in India that a lot of people from here order from, its www.alldaychemist.com it takes a few weeks to get the meds and the shipping is expensive but well worth it, especially when you know what you need and can order 4 or 6 months at a time.
Please let us know if there's anything else we can do for you.
May your troubles be less, May your blessings be more, May nothing but happiness come through your door Don't take your organs to Heaven; Heaven knows we need them here !
Re: Hi, I am new here « Reply #3 on Sept 21, 2009, 5:42pm »
My husband was a firefighter/paramedic and broke his neck on the job right after we got married. He was 35 I was 24. Being stupid young people when they offered him a medical retirement we took the $$ instead of the insurance that came with it. He also had a disability from the Veterans Association so we thought we were being smart. For most of my adult life I was self employed and never paid myself or paid into social security. Unfortunatley when I went to apply for benefits they told me I didn't qualify because my husband made too much money with his retirement. The state I live in does offer any medical help. That was the reason for the divorce. It was the only way I had a chance to get Social Security. As for medicine right now my doctor is giving me samples. I am taking spiriva and advair and alburterol. I have applied with the drug company of advair for free meds from them but have yet to hear from them. I have an appointment next month at our health department for help with the spiriva and albuterol.
I have been doing a lot of reading about a lung healthy diet. I have quit smoking since June 4th (day of diagnoses), and have begun some excercise. I was walking 1 mile every morning, but we live in forest fire country and the air became to bad for me to be out in. I just bought a stationary bike that I have started to ride. A 1/2 hour in the morning, and 1/2 hour at night.
My biggest problem is guilt. I can't believe I did this to myself and my family. My husband tries to be supportive, but I have to find a way to get over this diagnoses. I guess time will do that.
Joined: Apr 2008 Gender: Female Posts: 1,455 Location: Phoenix AZ
Re: Hi, I am new here « Reply #4 on Sept 21, 2009, 11:53pm »
Hi Kellier, I am going to post to you also. However, go to the Section COPD General. I will start a topic titled Living With COPD. That way we can keep it going in the COPD section.
Re: Hi, I am new here « Reply #5 on Sept 22, 2009, 6:34am »
Hi Kellier, happy you found us! I'm so sorry you are dealing with such a difficult and sad time. You've found a wonderful group of new friends to support you through this.
Re: Hi, I am new here « Reply #6 on Sept 22, 2009, 9:03am »
Kellie, the guilt at first can be overwhelming. I was so bad that I couldn't even tell anyone! Time and support is good for it and soon you'll feel better. We've all been through it so you not alone, I know it doesn't help much but in time things will be much better.
May your troubles be less, May your blessings be more, May nothing but happiness come through your door Don't take your organs to Heaven; Heaven knows we need them here !
Re: Hi, I am new here « Reply #7 on Sept 22, 2009, 2:59pm »
Kellier, I feel so bad that you have to go to such an extreme to be able to afford your medications. I know what you mean by the guilt. I think we all have felt that way. But you shouldn't! Cigarettes are the hardest thing to quit. You aren't alone and there are some here I know will give you very good advice.
I am glad you decided to join our forum. Maybe we can help you a little. I know they have helped me get through some difficult moments. Take care!
Joined: Jun 2009 Gender: Female Posts: 380 Location: Ala
Re: Hi, I am new here « Reply #8 on Sept 22, 2009, 5:52pm »
Kellier,So sorry about your situation, we all feel guilty, but doesn't help, None of us really expected all of this from smoking , When I smoked For a few years I knew i should quit but just kept it in the back of my mind.. we have insurance but the copay is so high, i too started ordering from ADC.. Its affordable, helps us a lot.. I sure wish you all the luck...stay with us and talk ..you will feel better. because we're all in the , well not the same boat but with COPD..Your Hubby seems to love you lots.. A friend...Virginia
Re: Hi, I am new here « Reply #9 on Sept 23, 2009, 2:57pm »
Hi Kellier, I am glad you found our circle of friends. We have a great group of people here and we all care about each other. Don't be so hard on yourself, time will help with the guilt feeings. I smoked for a few years after I was dxed and that was a really dumb thing for me to do. I'm sorry you have had to go to such extreme measures to get help, but it sounds like you have a wonderful husband that loves you alot. No piece of paper can change that. Good luck!
Re: Hi, I am new here « Reply #10 on Sept 23, 2009, 4:11pm »
Hi Keller,
Your story touches my heart but it sure sounds like you and your husband have a wonderful relationship. Your love for each other shines through your post. You are both truly blessed for sharing such a love.
Let me assure you - you have come to the right place for additional support. This forum is filled with loving, supportive and informed COPD patients.
While the initial diagnosis shocked me I have come to learn that it has changed me to be a better person. Life is such a gift and as you build your support team you will probably come to realize how special you really are because you have such incredible friends. Many people go forever without a circle of supportive friends. COPDers are strong, supportive and kind friends. I tend to think of them as my family. Your COPD will embrace you and be with you as you walk this journey.
There are many degrees of COPD. I would think that the best advice I could give you is to ignore the COPD "classifications" as much as possible. Let your body be your guide. Ask lots of questions and become as informed as possible. COPD information is a powerful tool to help guide you should things develop.
Please do not be hard on yourself. There are many that think that COPD is an autoimmune response. Many think this because so many people smoke and never get COPD while other smokers do get COPD. That logic tends to drive the belief that COPD is an autoimmune response. That said, perhaps you would have gotten COPD even if you had not smoked. Perhaps you would have gotten COPD from 2nd hand smokers.
The initial shock is inevitable. Time will come where perhaps that shock will be replaced with an insatiable desire to learn management techniques. We are hear to help you in all ways possible, Please do not hesitate to ask us questions.
Good luck and welcome to our family. You will love this great circle of friends.
Re: Hi, I am new here « Reply #11 on Nov 4, 2009, 10:25pm »
I am sorry I wasn't back here sooner. Life got in the way.
I applied for SSI benefits the first week of September and the first of October I recieved a "presumptive approval". I have been told I qualify for medical insurance through our state that has a "long term care" plan as well. It will take another 45 days for the approval to come through. I applied for perscription help through "Bridges to Access" for Advair and now will recieve a 3 month supply for a year before I need to reapply. I just applied for a program for Spiriva and was told I was approved... I am waiting to start recieving it also. I want to thank you all very much for your kind words and support. I will be back regularly now.
Joined: Apr 2008 Gender: Female Posts: 1,455 Location: Phoenix AZ
Re: Hi, I am new here « Reply #12 on Nov 4, 2009, 11:47pm »
Hi kellier. Glad you are back. Also good to hear that things are falling in place for you for help with the health issues.
This could be a beneficial place for you too. We often seem to help one another more than the doctors can. We are all living with the same disease, even though each is a little different.
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