Interviews Part 2

So, this is the second part of my interview saga, meaning three more interviews 🙂 I must say this is a very interesting experience and I’m very glad I’m doing this.


This is the interview of Tammy Jeanne Friedrich:

How old were you when your medical problems first started?

I was 14. I had Juvenile rhuematoid Arthritis at the age of 37, diagnosed with fibromyalgia, now they think at age 41 it may be MS.

What medical problems / conditions do you have?

Fibromylagia, possibly MS

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

I had Mono for 6 months and then the issues started showing.

How were you diagnosed and by what kind of doctor?

Neurologist and family doctor.

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

3 years and still counting.

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

Frustration, fear, concern, worry and helplessness.

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

No.

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?

Daily pain and then episodes of extreme pain.

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

When I am not extremely flared up, I can do a little bit of walking. And I love to swim. Swimming helps

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

Shooting pain, it feels like electrical shock. I lay down and relax or work through it. I don’t have much of a choice.

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

Doctors are still unsure.

How do you feel about having all these medical problems?

I am a survivor no matter what. So I face it head on and head held high.

What is the worst thing about having these medical problems?

Pain, confusion and lack of energy to do the things I want to do.

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?

It caused me to have to change careers for a sit down job.

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

it has drastically changed my social life as I have no energy, and my home life as its difficult to find someone to be in a relationship with due to the fact many days I don’t want to do anything except stay at home.

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

I have to choose what I have the strength to do in the day. Instead of how most people decide to clean their whole house and cook, I may only be able to cook and clean one room of my house.

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

Laundry and grocery shopping. I don’t have the strength to carry things up my stairs. I live on the 2nd floor.

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

I have learned that I have to relax and take it one day at a time.

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

No, luckily I have excellent insurance and my job has me on fmla so my career is secure.

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

Doing puzzles, listening to music to relax and watching a good movie.

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

Yes, I am a fighter and have helped others remain strong.

How do you explain your condition to healthy people?

That I may look healthy, but suffer everyday with a brain fog, slurred speech at times, extreme pain and a feeling that I am being shocked and that I’m always tired. I explain to them how most people can do a bunch of things in one day, but I have to pick and choose because if I overdo it, I will pay for it for the next couple of days.

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

I was told by a Dr that it was all in my head. And I have been told that I am just lazy.

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

Yes, my friends and family; I have been able to explain to them and they witness the suffering I deal with daily and at times have seen me walk with a cane due to lack of coordination and stability.

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

No, I am not afraid to be around others. I have come to terms that this is me and my life. If others judge that is due to ignorance, so I try to educate others.

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

Yes, I have said to myself that if this is life then why is it worth living? Since then I have grown and accepted it and feel that I can conquer anything, no matter how difficult.

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

Yes, knowing that there is no cure I have had to come to terms with it and accept it for what it is, and to keep being happy as I am blessed to be here and there are always others worse off than myself.

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

Be strong and reach out to others experiencing the same thing. Strength comes with numbers and support from others that understand my illness.

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

Yes, it has dramatically changed my relationship with individuals that do not understand it because they are so ready to judge or choose not to bother with me stating I’m no fun and don’t want to do anything. But it has also allowed me to realize who my true friends are.


This is the interview of Debbie Atwell Emery:

How old were you when your medical problems first started?

I was 47.

What medical problems / conditions do you have?

Fibro and Polyarthalga.

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

I am not sure if it came about when a good friend was in an accident and died 3 times or some personal problems or could have been genetic.

How were you diagnosed and by what kind of doctor?

First came the fibro; I was seeing a neurologist that could not make up his mind, so I went to a rheumatologist who confirmed fibro, then a year later the polyarthalga .

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

1 year to 1 1/2 years.

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

What did I have and what was going to happen to me? Would I end up in a wheelchair? Very scary.

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

No cure. They say to exercise, but it makes me hurt even more to do that.

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?

Yes. Some days it’s like that dull headache that you feel, then forget about, then hurts when you think about it. Other days it hurts so bad that even the hard pain pills don’t even touch it. Hurts to walk; my muscles feel like I was at the gym and overdid it big time. I also get stabbing in my body, some feel like needles and others feel like a 2 inch wide knife. Just moving any limb hurts all the time, just different kinds of pain on any given day.

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

No, it makes it hurt worse. But they say I should. Would love to see them have this and do everything they say I should.

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

When the weather changes; makes my whole body hurt. Cold is even worse. I stay in bed or couch try no to move any part of my body. Take pain meds to put my self to sleep.

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

They seem to be getting worse. I have my good day and bad days.

How do you feel about having all these medical problems?

I hate it. I hate the fact that everything I used to love I have given up. I used to ride my own motorcycle, belong to ABATE of Iowa, woodworking. It has taken everything away from me.

What is the worst thing about having these medical problems?

Read my previous answer.

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 still work. Yes, it makes it harder. By trade I am a painter at a University so very busy.

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

Same as the question as to how I feel about this. Iut I also missed my grandson 1 St birthday because of pain.

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

Yes. I get up at 5 am, get ready for work. At work by 6 am. Work till 3 PM. Take my son to work. I come home and let the dogs out. I get the back into the house and crash. My hubby wakes me up when he gets home, but I don’t leave the house too much.

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

Not everyday, but most days my hubby helps me if I ask. He cooks, does laundry, cleans washes dishes, what ever.

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

Finding something relaxing, like fishing.

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

Yes, very much so.

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

Fishing relaxes me.

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

I personally don’t have very many friends here that I hang out with, I work and come home. I try to give comfort to those on invisible disabilities site.

How do you explain your condition to healthy people?

I tell them what I go through.

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

I’m just getting old and to deal with it. Wah wah wah. I wanted to knock him out.

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

Yes, they think that what I am going through is nothing but old age aches and pains. Or that I am just looking for sympathy.

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

Not really. If I don’t know them I will 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?

Yes I have thought about suicide many times.

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

No. I have been in abusive relationships one after another and had to teach my self how to look for the right person.

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

Don’t let others get you down. Try to keep your stress levels down and love your self. It may not get better and this is your life now, but the only person that can affect you is you.

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

This thing has brought my husband and I closer together. My kids ask how I am and when they are around they help me. My mother and my sister and her husband understand and I can talk to them. My sister had her spinal cord bent in half, she was going into surgery for her back and she was dying and no one knew it until they opened her up and saw her cord. She had all the same kinds of pains that I have so she and my brother in law understand me.


This interview is done by someone who wished to stay anynymous:

How old were you when your medical problems first started?

T2diabetes at around 43 years of age; remainder at 50 years of age.

What medical problems / conditions do you have?

T2diabetes (controlled); arthritis (in one limb/area); partial paralysis of right face; trigeminal neuralgia; double vision; trigeminal trophic syndrome

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

2diabetes – developed, no family history of it. Arthritis – accident at work. Partial paralysis/loss of feeling of right face (brain tumor removal). Trigeminal neuralgia (brain tumor removal). Double vision (brain tumor removal). Trigeminal trophic syndrome (tentative diagnosis at this point) (brain tumor removal).

How were you diagnosed and by what kind of doctor?

T2diabetes – GP. Arthritis – Ortho Surgeon who did the surgeries to fix the shattered/fractured bones. Brain tumor – neurologist. Partial paralysis/loss of feeling of right face – neuro specialist. Trigeminal neuralgia – ENT who referred me to a neuro specialist who confirmed it. Double vision – Neuro-Ophthalmologist. Trigeminal trophic syndrome (tentative diagnosis at this point) – general consensus of several doctors in different fields (dermatologist, ENT, facial surgeon)

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

T2diabetes – accidental diagnosis during normal exam. Arthritis – about 6 months after the fall; I started hurting and then was diagnosed almost immediately. Brain tumor – accidentally found during tests (MRI/CAT scans) conducted after the fall at work. Partial paralysis/loss of feeling of right face – knew about it from self-diagnosis, “officially” documented about two weeks ago (note, it had not caused issues really until recently so, didn’t push for diagnosis). Double vision – knew about it immediately after brain surgeries, “pushed” for being referred when it didn’t clear up within 6 months (sometimes the nerves that control the eye muscles will “heal” within the first 6 months). Trigeminal neuralgia – thought that was what it was but didn’t push on it until the ulceration of the nose didn’t heal (trigeminal trophic syndrome?) and the constant pain got steadily intolerable so, would say about 1.5 years. Trigeminal trophic syndrome – no ‘official’ diagnosis yet and there isn’t any way to test for it nor heal it…it is fairly rare so there isn’t much research, etc. on it either.

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

Basically…”oh shit”, and keep on going forward and do the necessary research to make sure I was informed.

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

T2Diabetes – no cure, management through diet and medication. Arthritis – no cure and NSAIDs for pain. Double vision – surgeries to lengthen or shorten the appropriate muscles and prism glasses, may never be totally “cured”. Partial paralysis/loss of feeling on right face – no cure/no treatment except possibly time (cranial nerve damage can heal however it may take many, many years). Brain tumor – surgery and yearly scans. Trigeminal neuralgia – no cure, various types of medications which may or may not control the pain, etc., not ‘triggering’ the symptoms (hard to do because chewing, talking, breeze blowing on face, getting teeth cleaned, etc. are just some of the triggers). Trigeminal trophic syndrome – no cure, no medications, very rare disease.

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?

Arthritis affects the joint/area of damage and it is more constant during cold/wet weather and can flare with much use of the limb (ankle/leg). Trigeminal neuralgia – constant burning/tingling sensation (think of your foot waking up after “falling asleep” then multiply that feeling by 6…and that is the feeling off meds, multiply by 3 and that is with meds currently trying) with sporadic “electric” shocks (like hitting your funny bone x 3 plus someone pinching and twisting at the same time and a “needle” jabbing). Sporadic electric shocks come out of nowhere; there is absolutely no warning of when they will come so you can’t prepare for them.

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

At this point, I am still unable to do much exercise and definitely no sports.

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

At this time, the sporadic electrical shocks are more painful than anything else. There are some days that it all flares (arthritis, electrical shocks, more burning/tingling of face) at the same time and it can be rather intolerable. I take what meds I have and make sure that they don’t cause issues with my work (sedation, fogginess, etc.) and “push” through it…hopefully without being “not nice” and cranky in the process.

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

Depending on what it is, they can get much worse or can stabilize.

How do you feel about having all these medical problems?

PISSED at times however I am most certainly blessed by God because many miracles have happened in the last two years in relation to the timing of things and the medical issues/problems. Several of my doctors and therapists have called me a “walking miracle”

What is the worst thing about having these medical problems?

At this point in time, I have lost my independence because I can’t drive due to the vision issues and, working through the meds for the trigeminal neuralgia (side effects of the meds, if I have them as the dose increases, need to stabilize).

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 back at work. Does it make work harder for me…well, let’s just say I had to file a disability discrimination suit and leave it at that.

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

My life has changed tremendously since the brain tumor removal and the residual medical issues from it. As I said before, my independence is lost due to not being able to drive and I have had to move in with my Mother so I can pay the medical bills and also be able to put money away for the future.

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

M-F is basically get up and get ready for work (including grabbing a cuppa coffee); ride to work with friend; work through the day; come home; eat dinner; chill for a bit and go to bed early. Saturday is clean house; wash clothes and errands; if the stores aren’t open then on Sunday. Sunday is church and errands. It used to be that Mom would want me to go grocery shopping once a month on a Saturday or Sunday with her (3-4 different LARGE stores) and that STILL exhausts me after working a full week so, she has pretty much stopped expecting me to go with her.

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

Not really anymore. I did earlier in this medical ordeal.

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

Shear strong will and stubbornness that it is NOT going to beat me…and that I will NOT be limited by it. The last on the list of the “conquer it list” is the driving and the remaining surgeries to reconstruct my nose (skin grafts, etc.).

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

Yes. I have had to move in with my Mom to be able to pay the monthly payments, etc. to hospital/doctors, etc. and to be able to put away for the future (retirement in 15 years or so).

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

Until I get more stable on my feet and my independence back, I have “lost” photography. I read, watch movies. I plan to pull out the crocheting to finish a blanket for my son this winter and am thinking about putting together an article or something like it (book draft?) about my medical experiences and the miraculous things that happened in the hopes to be an inspiration to others in similar situations.

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

I believe I may have helped a couple of folks to sort through things when they were diagnosed with brain tumors…and I have shared my story with people (healthy and not so healthy) and have been told that it was an inspiration to them.

How do you explain your condition to healthy people?

I’ve given up trying for the most part. If I do try to explain it, I try to use something that they are familiar with already, i.e. the feeling of your foot waking up from sleep and multiplying it by 6, etc.

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

That I was faking (I wasn’t as ill as what the Doctors and I thought…because I didn’t “look” sick…it was all a front on my part to hide the pain and instability of walking, etc. when I came back to work) and that I fell down the stairs intentionally to defraud the company I work for.

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

Yes, I don’t think my management understands me; however, even before the medical issues…I was a square peg in a round hole so to speak, i.e. didn’t conform to what others thought to be “normal”.

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

Yes and no. I wouldn’t say afraid…just would rather be by myself than to put up with the drama, etc.

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

Yes, I have wanted to give up several times although not to the point of thinking about suicide. Something within me or outside of me (God) always rears up and pushes forward though.

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

Again, yes and no. There have been several significant things happen throughout my life (major ones like abuse of several types, rape, working 2-3 jobs to support my child and myself, nasty custodial issues, sickly child, etc.) and hurdles to overcome…maybe they prepared me for the illness/disability to come later in my life? As a side note, I have had more total surgeries and hospital stays in the last two years than I have had over the last almost 50 years.

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

Don’t let it get to you…keep on pushing forward. There is a reason for you to be here and a reason for what you are going through which only God knows. I have told my child before that pain is the way God tells us we are alive and that we have a purpose on this earth to fulfil.

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

I have pretty much been a loner before with “some social tendencies” outside of work. I am now even more of a loner and would be extremely happy to not have to deal with the work drama, etc. I am really not tolerant of stupidity, immoral actions and ethics, ignorance (and I don’t mean uneducated, I mean educated and IGNORANT. People who don’t have empathy or concern for others) any more (of course, this could also be influenced by my age and growth as a person?). I have always had many “friendly acquaintances” with minimal “trust with my life” friends and now I tend to have even fewer “friendly acquaintances” and the “trust with my life” friends have not decreased…although, they haven’t grown in number either. I can count about 5 friends that fall in that category (and I am not counting my child either)…and those I have known anywhere from about 42 years to 15 years.


Stay tuned for more interviews to come.

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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