Interviews Part 3

Hi, so this is the third part of my interview series. After this, I’ll take a short break from them to write a piece on Depression and Self esteem, which was requested of me. After that, I’ll continue with the interviews. I hope these interviews help someone. Thank you.


This is the interview of Dianne Charney 

How old were you when your medical problems first started?

I was 39 years old.

What medical problems / conditions do you have?

COPD (chronic pulmonary obstructive disease), IBS (irritable bowel syndrome), THORACIS AORTIC ANUERYISM 8.5 CM, AFIB (arterial fibrillation, sometimes my heart beats irregular)

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

I got COPD from smoking. Always had bronchitis and it is hereditary from dad. I got IBS from a young age, just didn’t know it back then. Thoracis is also hereditary, did have surgery to fix it.

How were you diagnosed and by what kind of doctor?

In hospital with pneumonia, diagnosed by lung doctor.

How long did it take for you to be diagnosed properly?

It took two years.

What was going through your mind when you received your diagnoses?

That I would have to be on oxygen 24/7 and have problems walking distances.

Is there a cure or treatment for your illness? If so, what is it?

There is no cure.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Not pain in the usual way, but I panic when I cannot breathe.

Are you able to exercise or do sports to help with the pain? If so, what helps?

I cannot exercise or walk long distances.

What are your worst symptoms? How do you deal with them?

Not being able to breath some days. I can’t move so sit in chairs with oxygen. I look forward to some pretty good days, though I tire very easily.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

Will remain the same, as long as I take my medication and quit smoking.

How do you feel about having all these medical problems?

I have an invisible disability, but still feel blessed. There is at least some whose symptoms are worse than mine. I haven’t a greater support system and invisible disabilities groups are always there to listen.

What is the worst thing about having these medical problems?

I love to dance and enjoy and education and working, and cannot do either. Hate that I have no energy.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

I cannot work, I am on SSDI.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

Yes, I used to be able to clean the house, dance and run errands, and now with low energy I can only do little things.

Are you able to have a daily routine? Can you describe your daily routine?

I don’t have a daily routine. It depends on how I feel every morning.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

I can no longer clean the house.

Do you have any tricks to make your life easier in dealing with your medical problems?

No, I just take each day as it comes.

Have your medical problems had an impact on your financial life?

Yes, I made good money when I was working. SSDI does not pay a lot of money.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I love reading a good book.

Do you consider yourself to be an inspiration or source of comfort for those like you?

Yes, because I have already been through the beginning of this.

How do you explain your condition to healthy people?

I explain that I have a hard time breathing, and to please be patient with me.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

If you really wanted to breathe, you could set your mind to it.

Do you feel as if people don’t understand you? If yes, can you explain why?

I feel most people understand.

Are you afraid to be around people? If so, can you explain why?

No, only when I have a panic attack.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

No, I still feel life is worth living.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

Yes, I was always healthy and feel that this has slowed me down and has made me weary from always being so tired.

Do you have a message for others in similar situations that may help them?

Yes, never start smoking, take one day at a time and live life to the fullest.

And lastly, how has this illness / disability affected your relationship with people?

Some people have walked away but my true friends stood by me.


This is the interview of Jaimee See 

How old were you when your medical problems first started?

I was about 5 when my mom noticed I’d cry all the time and say my belly hurt and they thought I just needed to move my bowels.

What medical problems / conditions do you have?

I have been diagnosed with Crohns disease at age 21 , Gerd at age 20 ,map dot fingerprint dystrophy at 28.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

I was born with my issues.

How were you diagnosed and by what kind of doctor?

When I was pregnant they said I had Gerd at age 20. Crohns after pregnancy, though in high school I was very ill and they said I was just a nervous teenager. Map dot fingerprint at age 28; an eye condition.

How long did it take for you to be diagnosed properly?

Gerd right away, Crohns many many years of multiple things wrong and not knowing what really caused them, map dot finger print dystrophy age 28 but I didn’t know it was happening.

What was going through your mind when you received your diagnoses?

I knew it before the Dr’s did with my crohns so I was not surprised. Gerd didn’t really effect me neither did map dot.

Is there a cure or treatment for your illness? If so, what is it?

No cure, just treatments which I’ve tried many of. I just had 55 cm of intestine removed sept 12th.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

Pain is high and normal for me. My Dr currently won’t give me many pain meds because he says that they can kill people like me with my condition as then we don’t know some thing is wrong or that the pain is to bad and we die in our sleep. So I deal with the pain or buy them from friends who have left over meds or when in do get them I stretch them or take my husband’s if he gets any, my mom’s if she has them. I have a mother of joint pain that I believe to be fibro or RA (rheumatoid arthritis) but have not been diagnosed.

Are you able to exercise or do sports to help with the pain? If so, what helps?

They say I can but I’m so fatigued and sore, so I don’t.

What are your worst symptoms? How do you deal with them?

Joint pain, cramping, diarrhoea, back pain, joints cracking and popping. I take pain meds if I can drink lots of water I also drink store bought juice drinks but can’t eat most fruits or vegetables they hurt my stomach and make me sick.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

Worse, I just had a resection surgery sept 12th but this could be the beginning of a long road or I could go into remission.

How do you feel about having all these medical problems?

It makes me stronger but I hate missing things in my life or living like this. I understand my disease at times. I can’t eat this or that at times ugh annoying.

What is the worst thing about having these medical problems?

Living with them and letting this control me.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

No, I work as a hotel manager about 50-70 hours a week.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

Yes, it affects me in how and what I do. But it has not changed me as I have always been sick.

Are you able to have a daily routine? Can you describe your daily routine?

Somewhat. I get up 2 hours before I leave for work to shower and get coffee in me and give me time to get sick before I leave for work if  I need to. Then as soon as I get to work an hour early I give me time to get sick again before working. I don’t eat until I’ve been up 5 -7 hours or I will be very sick. When I can take my humira every 2 weeks, I can live more normally and eat better and also my joints feel good but I always feel as though I have a cold and I hate that.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

Not really but my husband is great he also trips up and down steps when my joints are flared.

Do you have any tricks to make your life easier in dealing with your medical problems?

No tricks. I wish I had some.

Have your medical problems had an impact on your financial life?

Yes, I have so many medical bills it’s outrageous. Insurance doesn’t cover enough.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I repeat just keep swimming and know that I do with 24/7 whatever it takes 24/7.

Do you consider yourself to be an inspiration or source of comfort for those like you?

Yes, my son is being diagnosed and I want to inspire him.

How do you explain your condition to healthy people?

I don’t, or if I have to I tell them it like having the flu 24/7, achy joints, diarrhea and being sore.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

Don’t worry, you’ll be fine. I hate that, I feel it’s disrespectful.

Do you feel as if people don’t understand you? If yes, can you explain why?

yes, they think it’s going to go away or that it’s not a disease.

Are you afraid to be around people? If so, can you explain why?

No.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

Yes, right before surgery I had a year that was not good and I wanted to give up.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

No, I was very broke for a few years. I lived without stuff we needed to get through such as water and electricity and heat and was nearly homeless.

Do you have a message for others in similar situations that may help them?

Just keep pushing through. We have what we have for a reason.

And lastly, how has this illness / disability affected your relationship with people?

I don’t think it has.


This is the interview of K!

How old were you when your medical problems first started / what medical problems are they?

I was 26 age with ptsd, anxiety, pmsd, peri-menopause. 30 years of age when diagnosed with arthritis and 37 years of age with fibromalgia. Teen years diagnosed with spine disorders.

How did you acquire your medical problems? Were they caused by an accident, were you born with it, or something else?

Spine deformities I was born with, ptsd and anxiety due to different traumatic events in my life, peri menopause and arthritis are hereditary and pmsd and fibro I have no idea.

How were you diagnosed and by what kind of doctor?

Gp, chiropractor, gyno, rheumatologist.

How long did it take for you to be diagnosed properly?

Spinal deformities a couple years, ptsd and anxiety by a psychatrist and a psychologist first visit, pmsd and peri menopause a month, arthritis 2 months and fibro 2 years.

What was going through your mind when you received your diagnoses?

I accepted the ptsd and anxiety. I’ve been through allot of stuff in my life. I was accepting of the arthritis and perimenopause and pmsd being hereditary. Fibro I wasn’t accepting of, I ate healthy 90% of the time active and exercised still trying to figure where it came from.

Is there a cure or treatment for your illness? If so, what is it?

I use the chiropractor for pain relief. See the gynaecologist for birth control pills to stop the periods but I still have break through bleeding. Rheumatologist for more pain and diet and activity management. Currently not treating anxiety and ptsd, I feel I have it under control.

Do you experience pain because of your condition? Are you in a lot of pain on a daily bases, or is the pain sporadic? What kind of pain do you experience?

I experience mild to moderate pain if I follow my pain management plan, and if I don’t, it gets sever to the point where I go to the ER for steroids. A day doesn’t pass where I am pain free. Mainly I have it in my shoulders, neck lower back, hips, right knee but I have felt it in both feet legs, elbow, left hand feet ribs and touching makes it worse. I had episodes where I feel like I have the flu; this is arthritis, fibro and spine deformity related. Perimenopause causes random night sweats and hot flashes . Pmsd causes extreme mood swings, severe cramping, nausea, heavy bleeding but the pill works amazing to control all this.

Are you able to exercise or do sports to help with the pain? If so, what helps?

No sports. I gave up running and weight lifting because it made the pain worse. I do walk, stay active, and do range of motion exercises. I stay active cause sitting brings on stiffness and stiffness means pain but omega3 is amazing for morning stiffness.

What are your worst symptoms? How do you deal with them?

I just had my worse symptoms this past summer. So much pain I couldn’t walk, then so much pain in my arm I couldn’t use it. Steroids helped and now I follow my Drs advise. I feel that I didn’t and that led to my severe flairs.

Are your medical problems likely to get worse, or have they come to a stable point where they remain the same?

I was told arthritis is progressive, fibro just has different levels and peri meno pause leads to menopause which will take away the pmsd.

How do you feel about having all these medical problems?

I accept that I have them, but I don’t let it control my life. I self talk I may have these medical problems but I will come out on top every day and I picture myself on top of it. My faith gets me through too.

What is the worst thing about having these medical problems?

Having limited mobility and not being able to do the exercises I enjoyed doing. Dealing with pain and exhaustion every day and you don’t know the levels of it.

Does your medical condition prevent you from working? If no, does it make work harder for you? If yes, what exactly prevents you from working?

I am working, but my boss is just happy if I show up and wait on customers. I work for a privately owned local business. I know nobody else would hire me since I’m a “liability” now.

How do your medical problems affect your life? Has it changed much from the way it was before these problems began?

My house is allot less cleaner and lifting is out of the question, I need help with grocery shopping if my sons are home to eat too. Driving is limited to local only. Laundry my mom does, the deal is she brings her over too.

Are you able to have a daily routine? Can you describe your daily routine?

Routine helps. Work day: up at 9, out of bed between 9thirty and 10am. Birth control pill followed by 1300 mg of tylenol arthritis. I sit for 30 minutes before I make meals for the day and breakfast includes protein powder, cranberry and probotic supplement, vitamin d and b12, omega 3s. Teeth brushed, 15min walk and range of motion exercises, sit for 20 minutes, shower, sit for 30 minutes as it exhausts me. Afternoon, if I have to work I start between 3 and 4 and wont do anything else for the day. Work day ends at 10pm. If I don’t work, 1 thing of housework or errands. Advil 400mg liquid gel at 6, then flexril at bedtime, 5 mg for sleep without pain. I usually fall asleep between 12am and 1am. Through out my day I never sit for more than 1 hour. As for work its continuously on my feet, rarely can I sit down.

Do you need a lot of help with small, everyday things? If so, can you give a few examples?

Laundry, big grocery shopping trips. I can’t lift anything over 10 pounds and find lifting brings on pain so I avoid heavy lifting.

Do you have any tricks to make your life easier in dealing with your medical problems?

A healthy diet, keeping moving, and following your pain treatment plan no matter how you feel. Supplements are a miracle with no side effects.

Have your medical problems had an impact on your financial life?

Not yet.

Do you have any hobbies that help you stay positive throughout the bad days? Can you tell us about them?

I pray and read. I’ve been called a bookworm. I walk and listen to music.

Do you consider yourself to be an inspiration or source of comfort for those like you?

I haven’t yet but would like to be if I can.

How do you explain your condition to healthy people?

I tried and I give up. They don’t get it. I don’t expect them too, unless they have it too they won’t understand.

What is the worst thing anyone has ever said to you concerning your illness / disability ?

Three things I hate to hear: You’re too young for that. You look good. Feel better.

Do you feel as if people don’t understand you? If yes, can you explain why?

I never bothered with what other people felt about me. And having these diseases, I feel even more strongly about that.

Are you afraid to be around people? If so, can you explain why?

Due to my ptsd I cant be near anyone who is around 300 pounds, bald and has a goatee. It reminds me of my husband and I either try to get away or freeze up.

Have you ever reached a point in your life where you wanted to give up? Can you tell us about it?

When I had these 2 sever flairs this past summer I told my oldest son (he’s 19) that I cant do this anymore. He said; ‘Mama I love you and you cant give up. You have us.’, referring to my other son. I never had that thought again.

Is your illness / disability the biggest hurdle you’ve had to overcome in life? If yes, why?

No, surviving rapes and domestic violence is worse than all these health problems combined.

Do you have a message for others in similar situations that may help them?

I am a Christian so I do have to say this; God brought me to this and god will bring me through this. Religion aside you have to control whatever illnesses you may have. If not, it will control you. And don’t be afraid to move, it seriously helps, I feel better moving.

And lastly, how has this illness / disability affected your relationship with people?

The only people that matter is my family, mom and my sons. My sister has fibro too, which we don’t understand how we both got it. It has to be genetic but anyhow, and my BFF and they all understand so thankful for that

A/N: To comment, go to the box on the bottom where these words are above it: Geef Een Reactie, then write the comment and then click Reactie Plaatsen. Thanks

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