Wellness

[ANewHue]

From very young I suffered with chronic pain illnesses. I had a few brief years of relief and was diagnosed with another painful illness. I feel robbed, if it weren't for my health God only knows what I could have accomplished. With every decade a new health issue arose. Was just wondering how many like me are out there and how you handle it?

[Pandalady]

Hi ANewHue, I am usually a very private person and I keep my feelings and the story about my health inside. This thread inspired me to share in the hopes that I may help someone and be helped by others and their stories, as well.

I had seizures as a baby and was diagnosed with tuberous sclerosis at 6 mos. The seizures stopped but basically benign cysts began to grow on different areas of my body. Although the cysts are not cancerous, they can grow and become bothersome as the years progress. Growing up, it was on my face (manifested much like acne and rosacea) and I was made fun of. Now, those are not as pronounced as I've gotten older. As an adult, they are attacking my internal organs (heart, liver, kidney and lungs). Eleven years ago, I developed a lung disease (LAM) as a"companion" of the TSC. I am on supplemental oxygen due to diminished lung capacity. The cysts on my kidneys have enlarged enough just this past year to warrant surgery to cut the blood supply.

I cope one day at a time. Although, I am on supplemental oxygen, I still manage to teach full time. I have a wonderfully supportive family. My parents have been through this with me for 45 years and my husband for almost 20. We don't have children and he has understood this would be our life since we've been married. There are support networks with people with TSC and/or LAM. I met a wonderful woman who has both of my diseases and has gone through so much with her own battle. I feel that God only gives us what we can handle. I try to handle everything with Him in mind. I won't say that some days I don't get down and cry but then I think that there are so many people with things worse than me. I certainly cannot do this on my own. I am grateful everyday for the love and support of God, my family and friends!

[Mom2Dogs]

I am sorry about the chronic illnesses you both spoke about...I have been blessed with good health but I do have a family member that has been ill since her early 20's....several serious illness and she has had to have to 'replacement' surgeries due to medication....she was a single mom and finally met a great guy and is re-married...now one of her kids is in serious trouble with the law....I am so angry ....I am concerned that this family member will suffer a set back with her health since she is so worried and her child. She is currently under care for another limb replacement........

[ANewHue]

Panda lady. Thank you for sharing your story and I am sorry for what you endure. You are lucky lucky that you are able to work. When I was younger I was on the fast track in a job I loved, I am thankful I had great health benefits when I needed them. Unfortunately I was passed over many times for upper management positions because of my health issues. Since my illness is chronic it has been hard to have normal friendships. Some understand but most don't. During cold weather months I'm basically a shut in . I do the best I can but there are times when I just can't move at all. Over the years I've become used to missing events, like holidays , weddings and parties. Sometimes I have to weigh my options, is it worth pushing myself to do such and such which could result in me being sick for weeks. My DH understands but there are times that I know he resents it. All in all I know God has been with me and I still consider myself as being Blessed but there are times when I have a hard time living the reality of it all. Many I have met that suffer with the same illness are so different than I am, as bad as it may get at times I refuse to give in.

[Pandalady]

Momtodogs: It is completely understandable how circumstances can have an effect on your family member's health. I will certainly pray for her.

ANewHue: Thank you, again for starting this thread. I understand about cold and even extremely hot weather (which we get here in Georgia) and having to stay indoors. Due to my breathing limitations, I don't talk on the phone to people very often. I also can empathize with having to make a choice in whether or not to attend events. You are absolutely right, some understand and others do not. My MIL was mad at me for years since we were not having children. I am not entirely sure she is over it to this day. DH sides with me. We don't bring it up during family functions but for years, it was the "elephant in the room." I will keep you in my prayers.

I hope we keep this thread going to support one another.

[ANewHue]

Thanks again panda lady, I feel I do pretty well playing with the cards I dealt. In the very beginning it took a lot of willpower but I finally got to a place where I was okay. The few conversations I had with others who were in my shoes just depressed me. A top doctor told me that it was obvious what I was doing was working so if He was me he wouldn't change anything and I haven't. Other than the illness I'm a pretty positive person and prefer to be alone rather than spend time with others that would bring me down. When I feel good it's like I am my old self. People who don't have limitations don't know how lucky they are but truth be told I'm in better shape than many of them. I maintain my weight and I workout when I can so for someone who doesn't know my situation I look like there is nothing wrong. I've been through the mill with many things due to people's perceptions. Many years ago another told me after surgery that I was a very strong person mentally because another weaker minded person would have blown their brains out if they had lived with the pain I had without taking pain meds. The surgery he performed confirmed what I had been living with although many other doctors before him told me it was all in my head , so for years even though I knew it wasn't I was labeled a hypochondriac. I also live with the fact that I suspect another family member suffered from the same condition which was kept secret. Again I thank you for sharing and it would be great to keep this going .

[shoekitty]

On 2/1/2015 panda lady said:

Hi ANewHue, I am usually a very private person and I keep my feelings and the story about my health inside. This thread inspired me to share in the hopes that I may help someone and be helped by others and their stories, as well.

I had seizures as a baby and was diagnosed with tuberous sclerosis at 6 mos. The seizures stopped but basically benign cysts began to grow on different areas of my body. Although the cysts are not cancerous, they can grow and become bothersome as the years progress. Growing up, it was on my face (manifested much like acne and rosacea) and I was made fun of. Now, those are not as pronounced as I've gotten older. As an adult, they are attacking my internal organs (heart, liver, kidney and lungs). Eleven years ago, I developed a lung disease (LAM) as a"companion" of the TSC. I am on supplemental oxygen due to diminished lung capacity. The cysts on my kidneys have enlarged enough just this past year to warrant surgery to cut the blood supply.

I cope one day at a time. Although, I am on supplemental oxygen, I still manage to teach full time. I have a wonderfully supportive family. My parents have been through this with me for 45 years and my husband for almost 20. We don't have children and he has understood this would be our life since we've been married. There are support networks with people with TSC and/or LAM. I met a wonderful woman who has both of my diseases and has gone through so much with her own battle. I feel that God only gives us what we can handle. I try to handle everything with Him in mind. I won't say that some days I don't get down and cry but then I think that there are so many people with things worse than me. I certainly cannot do this on my own. I am grateful everyday for the love and support of God, my family and friends!

You inspire me! Thank you for sharing

[Pandalady]

Aww...thank you, shoekitty! That makes me so happy! I feel that if I can offer hope to someone, I have fulfilled my purpose!

[05gage25]

On 2/1/2015 panda lady said:

Hi ANewHue, I am usually a very private person and I keep my feelings and the story about my health inside. This thread inspired me to share in the hopes that I may help someone and be helped by others and their stories, as well.

I had seizures as a baby and was diagnosed with tuberous sclerosis at 6 mos. The seizures stopped but basically benign cysts began to grow on different areas of my body. Although the cysts are not cancerous, they can grow and become bothersome as the years progress. Growing up, it was on my face (manifested much like acne and rosacea) and I was made fun of. Now, those are not as pronounced as I've gotten older. As an adult, they are attacking my internal organs (heart, liver, kidney and lungs). Eleven years ago, I developed a lung disease (LAM) as a"companion" of the TSC. I am on supplemental oxygen due to diminished lung capacity. The cysts on my kidneys have enlarged enough just this past year to warrant surgery to cut the blood supply.

I cope one day at a time. Although, I am on supplemental oxygen, I still manage to teach full time. I have a wonderfully supportive family. My parents have been through this with me for 45 years and my husband for almost 20. We don't have children and he has understood this would be our life since we've been married. There are support networks with people with TSC and/or LAM. I met a wonderful woman who has both of my diseases and has gone through so much with her own battle. I feel that God only gives us what we can handle. I try to handle everything with Him in mind. I won't say that some days I don't get down and cry but then I think that there are so many people with things worse than me. I certainly cannot do this on my own. I am grateful everyday for the love and support of God, my family and friends!

May God always bless you! You sound like a wonderful, kind and loving person. So sorry for the hand you have been dealt, but you are an inspiration to all of us!! I am thankful that you have the support of your family and friends.

[ZoetheCat]

I'm so sorry for what you've had to endure, ANewHue. I kind of understand in the sense that I had a lot of physical problems in my teens and twenties. In fact, I kind of feel like I was not able to advance career-wise because of those issues. But I've been so fortunate in that I am now in great health at age 53 (54 next Friday). What I've learned is that you never know what the future may hold. I also strongly believe that it's important to be kind to everyone you meet because everyone is battling something. It's not always obvious, but we're all hurting in some way. I truly wish you the best.