"I'm Thankful to See The Next March 29th!"

This is in Chronic Babe's Blog Carnival # 26, "I am thankful for..." Last year on this day, March 29th, 2010, I was at Piedmont Hospital in Atlanta, GA on my first night of recovery following right shoulder replacement surgery. I am writing this post on March 29th, 2011, thankful that I have made it a full year with a wonderful new shoulder! I wouldn't be here today if it weren't for such a wonderful orthopaedic surgeon. He is the best in town, and that is why I picked him. My shoulder had collapsed in Oct. of 2010, and I waited until the end of March that year for that particular doctor to replace it. I could have had another orthopaedic surgeon from another group do it sooner, but I chose him! Thank you, Dr. D! I also would like to thank my wonderful friends from the Young Professionals Arthritis Group. They had brought me food as I recovered. Thank you dear friends, and you know who you are, Susan, Ang, Carlene, Kelbi and Michelle for being wonderful company to talk with and for taking me out when I was stuck at home and couldn't drive yet.

There is so much to be thankful for in this past year. With this shoulder replacement, I was able to get back into an exercise routine that helped me to get my strength back. It helped me to get a routine. Not even 7 months after my shoulder replacement, we were matched with a birth mother! What a wonderful gift to get well for! Thank you to that family for choosing my husband and I to raise Michael. I don't think I have ever been more thankful for anything in my life. With my health on the up rise, I could look forward to being a mommy for the first time in my life!

Although we had our rough times preparing for Michael to come home to us--meaning that the birth family almost changed their minds when they found out I had arthritis. They almost decided against my being Michael's mommy for fear that I couldn't do it because of my joint problems. So thank God for my Dr. W! He agreed to speak with the birth family to let them know that I would be a good mom, and that my arthritis would not prevent me from being able to raise Michael. So thank you, thank you, thank you, Dr. W!!!! I will never forget what you did to change our lives from husband and wife to daddy and mommy!

Thank you so much for all of the support that I have received online. Who would have guessed that people that I never met and probably will never meet in person would have given me so much encouragement and also have made me realize that blogging isn't just for me, it helps others. I am so thankful for all of you out there in cyberworld that have read my blog and have commented and given responses and replies. You have helped me to use my blogging and now Blog Talk Radio to help others in their journey to help themselves by helping others just by telling their story, and by helping themselves by the sheer joy of knowing that you helped even just one person with your story! What a wonderful feeling!

I am thankful that I decided to blog about the pain of waiting to have my shoulder replacement because had I not done that, who knows where I would be today~one year and a half since I began my blog! So thank you all my followers, friends, doctors, cyberfriends, facebook friends, chronic babes, and family that has been there for me and I for you! Remember, if it weren't for you, there would be no blog, and if it weren't for me, this blog would suck! So my story of my struggle has brought humor, love, pain, sadness, and most of all a great read for you all! Thank you all for listening and being there! Hang in there because ya never know when the next joint will need replacing!!!! Blessings and healing to all of you out there!

A Note to Us (Body, Mind and Soul):

A Note to Us (Body, Mind and Soul):

I thought that we had finally reached an understanding. I know that you will sometimes have days when your muscles will tighten up so badly that you can't move them. You will still wake up every single morning with stiff joints that will get better as the day progresses. I know that there are still some unknowns like when the other hip and shoulder will collapse and when both knees decide to totally give up and collapse all together. But what is up with you right now?

Why are you not communicating with me again? We were doing so well for a while! We were able to work together to eat well, exercise, and enjoy life. Now, you are sending out these strange new symptoms from the Body to the Mind and it is really irritating to the Soul! There are hot flashes, sweats, an increase in blood pressure, tachycardia, a decrease in sleep but an increase in sleepiness and fatigue.  The Mind gets these symptoms from the Body and automatically thinks it's something hormonal! Is it something totally new?  Is it menopause or my thyroid? Have we put on weight? Oh my, we have gained 25 pounds in 6 months!!! OK, why has the body put on so much weight? The Mind is obsessed over the weight gain! It is becoming too much for the Soul, for our spirit! It's upsetting us and making us depressed! 25 pounds isn't good for our joints, ya know. We are trying to conserve what we have here!


OK, the doctor said it isn't menopause or the thyroid. Let's really think about it...What is different? 7 months ago, we started a new fibro med, Savella. We looked up the side effects and to our amazement, they are all of our problems except weight gain. Now there are people that have said they gained weight on it. It is an antidepressant, and they do cause weight gain in some people. These particular side effects from Savella that we're experiencing are actually adverse reactions!!! Don't stress, don't stress, don't stress! We will wean ourselves off it. That is the responsible and right way to do it. So we begin...

What are we doing? We are having withdrawal symptoms coming off Savella. We wouldn't be having these symptoms if we tapered the dose, but instead we stopped taking it cold turkey. We did think about it for a good 15 minutes. We went through the pros and cons. We decided to just stop it because we became afraid of all the cardiac symptoms that we were having. We wanted them to stop. We didn't want to have anymore harm done to our heart than what may have already been done! So we just stopped it. To rationalize what we did, we thought about if we had been allergic to the medication, we would have just stopped it; wouldn't we? Now tomorrow we see the pain doctor. What will he tell us? Oh dear!


We just want to feel better. We want to be able to go to belly dancing class again next week and to attend aqua aerobics without feeling dizzy. We were feeling so good. The reason we went on Savella is because the migraines came back so we went back on the migraine medication. By doing that, we went off the medication for fibro and went on the new medication for fibro, Savella...and here we are today.


We are a mom now. We have a 3 1/2 month old baby boy. We must all work together and be on the same page to be strong enough to take care of a new baby. He is getting so big, and we must be healthy to hold him and carry him around the house. 


We are a team. Remember what it was like just 6 months ago when the team was working so well together. We were the right weight. Our joints did not ache every time we bent over and picked up Mick. Our fingers did not stiffen every time we tried to put his diaper on. 


Come on Team Dana! How can we get the team back? When the withdrawal symptoms are better, let's start exercising more! We already walk together. We already attend aqua aerobics together. We signed up for our next belly dancing class that begins next week!

Come on Team Dana! Let's work together Mind, Body and Soul! 

Dear Body, please tell the Mind when you need more help with your symptom checks. Dear Mind, please look toward the Soul to give you strength when you begin to feel depressed and confused by the Body's symptoms. Dear Soul, please do not give up on the Body and the Mind because we need your Spirit to keep us in check! We need all of you to keep Dana all together as a whole person. 

Thank you so much! Hope to hear from each of you soon (Body, Mind and Soul),

Love,
Dana

I Can Be a Mommy & Have a Chronic Illness!

In Chronic Babe's "I can do it!" we talk about something you thought chronic illness would never let you do until you mustered up the courage and went for it.

As you know from following my blog, my hubby and I had been trying to adopt a baby for about 6 years now, and you also know that I have several chronic illnesses that cause pain, fatigue, disability and joint replacements (among other things). Well, I have always thought of myself as a brave person and a strong woman. I was strong long before the chronic illnesses became permanent, so at least I had a good foundation! I never realized how strong or how courageous I truly was until my body tested me to the extremes, and daily life became more and more challenging. I realized when I became so overwhelmed that I just needed to step back and take a good look at myself. I had gotten overlooked. It was awfully foggy at the time and hard to see ME through all the CHRONIC STUFF! When I finally took a good hard look at myself, I realized that I didn't change at all. My health changed. I was still the same Dana that I had always been; well, I was a bit more experienced and a lot more educated about the world. I didn't realize that of course until I saw myself again for the first time.

I still had the same hopes and dreams; the same values; the same beliefs; the same goals. I had to tweak a lot of things to fit a newer, different lifestyle, but above all, I found out that I can accomplish anything and everything I set out to. Now I have to constantly tell myself, remind myself if you will, that things that once were accomplished easier, faster, and more directly are now done more slowly, carefully and what seems to appear as a more round-about way. It is an amazing discovery! I can have chronic illnesses, have goals, accomplish goals, and not lose sight of ME! I love it.

So what is so important about this. Well to me, and to all of you with similar issues, when you become Chronic Illness instead of Dana, that actually becomes your identity. You lose yourself. You lose that want for life, to live for anything including yourself. I'm not even being extreme. I'm not even talking about suicide or anything like that, although it could get that bad for some people if you don't find yourself quick enough. For me, I lost who I truly was--my spunk, my love to laugh, to dance, to see the beauty in things, and to want anything for myself.

When my hubby and I were married, nearly 11 years ago, we vowed to have a family. We new we wouldn't be complete without children. That was something that we wanted for ourselves for so long. Although, we continued to go through adoption agency after agency, the foster care system, and even adoption facilitators (as well as advertising with a facilitator online), a part of me thought it would never happen after approaching the 6 1/2 year mark. I began to fear that maybe it was God's way of telling me that I "couldn't" do it, I "couldn't" be a mommy.  I started to bury the goal beneath the chronic illnesses. We signed with a new adoption place in December of '09. I started to come out of the fog and realize that I needed to start working toward that goal, to be a mommy. I knew if I didn't find that hidden "mommy" inside me, she would be lost forever. I knew I didn't want to lose that want. It was something that was highest on my list of goals. We made a promise to ourselves and God on our wedding day to have a family, and here I was, 35 years old, still childless!

The moment we began with this adoption place, filled out paperwork, had our physicals, got our fingerprints and background checks, and did our home study, Dana had surfaced! I once again was getting those wonderful "mommy" feelings!  Thank God. We waited and waited with this place to be matched with a birth mother.  It felt like eternity! I knew there was a baby out there for us, and that was a good sign to me that I was hopeful once again to be a "mommy." We right away put the nursery together, decided on a theme (forest animals), began decorating, and we bought our first baby layette of bath towels and onesies and set it in the nursery. Jim put the crib together. We made our photo album up to handout to birth mothers that fit our preferences. We were open to any gender, up to a year old, any race or creed and a sibling up to age 8 as well. We began to prepare family and friends. We had our website put together and were linked to as many as 15-20 other websites. We even made a video welcoming a birth mother and baby into our home. I painted a gigantic heart tree and hung it behind the crib. We waited...

The most important thing here is that the waiting wasn't painful. We prayed a lot and had faith that there was a baby out there for us. We thought the baby would most likely be of another race because of statistics, so we prepared family and friends for that. And we waited...patiently...I actually had something in my life to wait for, to dwell on, to pray about besides my chronic illnesses. It was a welcome change of pace.

Then, when it felt like time had stood still, we got a phone call in October, the week before my mom's birthday. A birth mother and her mom had chosen us to parent. Wait a minute...What did she just say? OMG! The first thought that came to mind was, already?  After 10 months with this adoption place, I suddenly felt like we hadn't waited that long. I know, too funny, right?!  Jim was out of town at a university outside of Philly for the weekend. He hardly ever goes out of town, but he was attending a conference. He was in the middle of a Nor'easter as well! It took him 3 hours to drive 70 miles! I hadn't heard from him in hours. I was worried and excited all at once. I didn't want to call him while he was in a storm, so I waited for him to get to his hotel.  I didn't want to make a decision to speak with the birth mother and her mother without talking with my hubby first about the situation. It's only right; after all, we are a team!

I explained the situation to Jim who safely arrived at the hotel. He was so excited as well. The next day, the birth mother's mother called me at home. We spoke for two hours on the phone and hit it off well. Then I spoke briefly with the birth mother. She was very sweet. I told them that they could speak with Jim when he returned home. They agreed, but felt so far that they wanted to go ahead with this. I also agreed. Jim talked to the birth mother 2 days later. It went well. We talked all 3 of us for a while on speaker phone too. We laughed about Jim playing sports, and whether or not Michael would be a good athlete or not. She wanted us to name him Michael Robert. We agreed. We agreed to raise him Catholic like ourselves, to say the rosary, to send pictures of him to the family. We had no problem doing this. Michael was going to be our son!...

Meanwhile, our last name was leaked somehow by the adoption place. We don't know how, but what was done, was done. They googled me and found out that I had several chronic illnesses--joint diseases. Our adoption coordinator contacted me to say they were having second thoughts. I was devastated! Was I right in the beginning to think I couldn't be a mom? Was I not cut out to be a mom after all?  When the birth mother's mother called me, she said some awful things to me about my illnesses and my inabilities to be a mom to Michael. She obviously didn't realize that there are people who are great moms who are in wheelchairs, who don't have the ability to use their arms, who can't walk, who are blind or deaf. To some, these are seen as inabilities to be a mother, but to those that are moms and "can do it", they are just differences. They take care of their children but find other ways to reach the same outcomes. I couldn't think of how to change their minds. I felt so hopeless and helpless, I felt myself slipping back behind the chronic illnesses again. I began to lose Dana and the mommy I was to become in less than 2 months. Think fast! What to do? I offered to fly up to meet them. I offered to have my rheumatologist call them and let them know that I am perfectly capable of taking care of a child...

They just needed time...

Time for me at that moment just made me slip further and further behind the cloud...Then the phone rang. They agreed to speak with my rheumatologist. I don't know what he said to them, but after I arranged for a time for him to contact the family, 24 hours later, the birth mother's mother called and left a message for us to contact her. We called back immediately.  She said that they thought about it all, and they picked us for who we are as a family and how we will raise Michael. Anyone can get sick or hurt at anytime, and we have no control over it, so they wanted us to parent Michael. We said thanks and that we had prayed so hard over this. We felt so connected to Michael already, calling him Michael to everyone we know. He had a name, he was our son already! The phone call we received was the weekend of the feast day of St. Gerard Majella, the patron saint of childbirth and motherhood, also my mom's birthday. Michael was due on the Immaculate Conception. We prayed to St. Anthony every single day for a miracle. All of a sudden, we received a wrist rosary with St. Anthony on it, then a St. Anthony key chain, and while visiting friends in Boston, I looked in the directory to find the nearest Catholic church. 2 minutes from our hotel was the Shrine of St. Anthony. We lit a candle there and said a prayer again for a miracle!  Also, our hotel # was 128, which was his due date 12/8. The birth mother and her mother gave us a gift of a picture of the Holy Family: Mary, Joseph and baby Jesus. We were still in the hotel for the feast of the Holy Family because we were out of town the entire holiday season.  We found out also that the birth mother's middle name was Mary and the birth mother's mother's middle name was Joe, so Michael was like Baby Jesus at the Inn! So many wonderful religious significances in the birth of our baby. We are going to baptize him June 26 which is the weekend of the feast of St. John the Baptizer! Might as well keep with the theme!

Ok, so speaking of theme; I found out that I can be a mommy! I am a darn good mommy. I am home with Michael every day while Jim is at work. I have been feeling great. I am able to do everything that any other mom can do, but sometimes I just have to go about it a different way. I might have to lay him across my lap or carry him in sling. I might have to prop him up on a pillow and feed him a bottle that way. I might have to have Jim open the formula cans so I can pour it into the bottles. Some days, we have lazy days together where we lay in bed together and play in bed. He has adjusted well with his mommy and her chronic illnesses. Ya know, that is the only way he knows it after all. It is normal to him. I change his diapers just fine. As a matter of fact, as long as the supplies are all laid out so I can easily reach them and get to them, we get those messy poopy diapers taken care of in jiff!  We have lots of fun together. I am enjoying being a mom so much. Thank God I didn't keep Mommy Dana hidden behind Chronic Illness. I am so much more than that!

Our big adventures are going to the Farmer's Market together, doctor's appointments (he knows all my doctors now), and taking walks with the stroller and his furry brother Cookie! Life is so beautiful again! I'm so glad I have Michael to share it with, to teach about life and love, and to understand about people with chronic illnesses. He will be such a compassionate and understanding person because he had ME for a MOMMY! All because I decided to search for myself again!

Thanks for listening!

Guilt Is a Real Symptom!

There are so many symptoms of chronic illness that seem to cross over from one disease, illness, syndrome, etc. to another.  Focusing on pain conditions because that happens to be my specialty, chronic pain conditions tend to come with fatigue, pain, loss of sleep, depression, and other widespread symptoms as well as vague symptoms that many don't even know to list as a symptom that go with chronic pain conditions. One hidden symptom that may get overlooked by the person with the chronic illness and by those around him or her is guilt, yes guilt. Now, you may ask how guilt is a symptom and not just an emotion, a feeling, or a result of being sick...so allow me to explain...


Every single day with a chronic pain condition, every decision we make, every place we go, every step we take has consequences. And we know very well that these consequences do not only affect ourselves. Yes, we would love if each decision didn't lead to another, and another, and yet another, but that is how life is. We may plan for certain things, but we all know that planning doesn't always mean a thing when it comes to a chronic illness. We never know when pain, fatigue, exhaustion, or pure overplanning can occur. We may wake up with a day that is a better pain day, but by the time we leave our house, it has shot clear up to a bad pain day. It is not our fault; it could be the weather, stress, or that we have a cold on top of our chronic condiiton. A real problem that occurs with all of this planning and pain, etc. is that we have to tell the friend that we were going to meet for lunch that we are going to have to cancel or reschedule for another day, that we just can't make it today. We might not be able to spend that extra time with our baby or child because we need to have a lot of extra resting today. Maybe you have a baby that you can't hold as much today or a young child who wanted to go to the park to play, and you had to tell him that you have to do it on another day when Mommy is feeling better. Maybe it was an important work day because you were in charge of running the meeting, and you had to call in sick, and worse yet, your boss had to take over your meeting for you.  Maybe you are a religious or spiritual person, and you just can't make it to the church service today because it is so hard just to get going that you know you won't be able to stand up during the service. What do all of these scenarios have in common? The answer is GUILT! Yes the hidden symptom of chronic pain conditions. We don't always see it, and people on the outside looking in don't always see it either. Guilt is a symptom that can actually cause you to feel even worse. You may think there is no way you could possibly feel worse, but you definitely can.

I have felt the guilt build up within me when I have had to cancel on the same friend numerous times. You begin to think that friend must not understand. She must think that I am just bailing on her because I don't want to be with her. It hurts us just as much as we think they hurt because we cancel on them.  We are dying inside dwelling on it over and over again. Will she ever believe that I want to go to lunch with her again? Will she think I am faking? Does she think I am really sick or that I just don't want to be with her? It is awful what it does to us. I have had the guilt of having pain and fatigue and being unable to hold my infant son as much as I'd like because it hurt too much, or my arms were too weak. I felt like he knew something was different. I felt like he thought I didn't love him anymore. It just tears at your heart! You find other ways to be present, to show your love and to play with them, but it isn't the same as holding a little baby in your arms.  They are so sweet and innocent, and hopefully they have never felt pain like you have felt, so they do not understand why you won't hold them when they cry. Instead, you console them in different ways. You lay them on your lap, put them next to you and talk to them and touch them. But the guilt is too big to tuck away.  Although you can't see it, it surfaces in other ways. It causes a pain so deep within your heart, no pain meds can reach it. It can't be measured on a pain scale either!  My son is only 3 months old, so I do not know what it is like to make promises I can't keep to a young child who may want to go to the park or something similar, but I can certainly imagine what it would be like when my son is older.

I do not work anymore, but I did have the guilt of missing work, important dates that I was supposed to be there and had to have someone cover for me because of my illness because of my surgeries. I felt so much guilt! Also, I am a very spiritual person. I love to go to church on Sundays and holidays. When I can't because of my illness, I feel so guilty. I think that God gave me so much, I should be able to go for an hour to thank Him. And yet, I cannot! The guilt is incredible.

Guilt is real. It hurts. It is a symptom not a feeling or an emotion. We cannot ignore it. We must work through the guilt because if we don't, we will find ourselves getting sicker. It is not something that we can hold on to. It will find a way to surface because although it is an invisible symptom, it cannot stay hidden forever!