Connecting The Dots...

Although you know about a lot of my medical problems, I think it's important to go over the entire medical history of my struggle to find the right diagnoses. Many people are going through the same thing everyday. It's a terrible thing to go through. It takes forever...lots of pain and suffering before the right meds are prescribed. It's a hard life to live with a chronic pain illness anyway, but getting to the diagnosis is half the battle. 

 

I have Psoriatic Arthritis, Sjogren's, fibromyalgia, CFS, Hypermobility EDS, Osteonecrosis,
Osteopenia, Osteoarthritis, Pseudotumor Cerebri, Endometriosis, and so
much more. I was always a sickly child. I didn't walk until I was 16
mos. I couldn't flush the toilet or turn the door knob until I was 5
years old. I was a dancer starting at a very young age, 2, b/c my mom
thought it would help build up my muscles and strength. I always had
aches and pains since I was a young child, but doctors always thought it was because I danced. Also, the doctors said that my immune system was not fully developed, so I would pick up everything. So I had to be extra
careful around others. A few of my diseases are Auto-Immune diseases,
the others are not.

I was always sick. In second grade, I missed 32 days of school. I would
get strep throat every single time I returned to school. Then I ended up
w/ chicken pox that same school year so bad that it was in the corners
of my eyes, my ears, the bottoms of my feet, etc. My body was covered!

In High School, I had Mono from the Epstein Barr Virus, and was very
sick from it. I had no energy at all. I had heard about Mono before, but
never knew how drained you really felt. It took me 6 months to feel
human again.

Again in College, I had Mono again. It was even worse. I slept through
an entire semester. I was so sick. I didn't eat. I lost weight. It was
awful. I found out that I would continue to get Mono 7 times at least,
each time being worse and worse.

One year I had Mono an Shingles at the same time. I felt like a truck
hit me and put it in reverse to back up over me a second time. Then,
that same year, I got Shingles again. That is when my joints began to
really start hurting me again. I thought it was still from the Mono, but
it just wouldn't go away. I was told that I had Chronic Fatigue
Syndrome, but the doctor said that most medical people don't believe in
it, so I would have a hard time getting treated. I was also diagnosed
with hypertension in 1997. I had a hypertensive storm. It was severely
high--280/120. They told me that it was primary hypertension w/ no
underlying cause.

I got married in 2000, and my hubby knew all about my illnesses, but he
married me anyway. I began having pain in all my joints.The doctors said
there was nothing wrong w/ me, but no one x-rayed my knees or hips or
did any tests on my legs at all. Instead, they did a brain scan to
search for lesions to rule out MS. When that was negative, they no
longer searched for anything physical. They assumed it was
psychological. I was put on antidepressants for depression. I was told
depression could cause pain.

I had horrible reactions to the antidepressants.


We moved to KY in 2002. I didn't have any doctors yet, so I ran out of
meds. I went to see a psychiatrist who said that I wasn't depressed and
shouldn't be on antidepressants. Then I couldn't walk up our back steps.
The PCP sent me to an orthopaedic surgeon who did an x-ray. He found
nothing. But he told me that he had an idea what it was. He sent me for
an MRI. He told me then that my diagnosis was osteonecrosis or avascular
necrosis of both hips. Two months later it showed up on an x-ray. It
was stage 3. One month later, I had core decompression on both hips. The
right hip took; the left did not. I was in a wheelchair the following
year and remained there for 6 months. I had a total hip replacement of
the left hip in Dec. 2003. I was 29 years old. I went from the wheel
chair, to a walker, to a cane. I used the cane for quite a while until I
switched arms and used the cane for the other hip.

I didn't understand why all my joints and muscles hurt so much though if
I had AVN/ON in only my hips. I soon found out that I had AVN/ON in my
knees and shoulders as well, and the shoulders were as bad as the hips.
Then a rheumatologist said that I had to have some type of connective
tissue disease if I had all of these joints involved in AVN/ON. Already
AVN/ON is so rare to begin w/, but to have 6 joints w/ idiopathic
involvement almost never occurs.

I was diagnosed w/ sero-negative rheumatoid arthritis in 2003. Then it
was changed to sero-negative spondylarthropathy
involvement. Then I was also diagnosed w/ Sjogren's that same year when I
found out I had no tear production, and my cornea's had sores on them. I
also had blocked salivary glands b/c no saliva was being produced. I
was put on anti-inflammatories, oxycontin, artificial tears, restasis,
pilocarpine, and an anti-malaria medication (plaquenil) for arthritis.

We moved to RI in 2006, when I was finally diagnosed with fibromyalgia
after having excruciating muscle pain for all those years w/ no relief.
He started me on an antidepressant, hoping for no crazy side-effect like
before, and also a muscle relaxer. It was a good start.

RI was a great place for me to live for a short 9 months. I was finally
diagnosed with psoriatic arthritis when I broke out w/ psoriasis from
head to toe, and I also had a sausage digit indicative of psoriatic
arthritis. I found out later that I had psoriasis when I was a child, so
that would have helped w/ an earlier diagnosis. I also had my
medication changed from plaquenil to methotrexate (a chemotherapy
medication). My fibromyalgia medication remained the same for the time
being.

We moved to GA in 2007. My rheumy there decided that he didn't care what
my medical records said. He took me off all my medications to see for
himself if my joints would swell. I couldn't even believe this was a
real Atlanta doctor. He was even voted Atlanta's Best Docs. In the
meantime, I tried to get into another local rheumy that I heard was a
great doctor. While I waited those 5 months however, I could hardly
move. I also was waiting to get into a pain doctor for the AVN/ON and
fibromyalgia treatment, which also took several months. I had pain where
I didn't even know you could have pain. I had sensations in my body
that I never felt before. I literally prayed to God that I would just
die!

One week before my appt w/ my new rheumy, my elbow swelled up to the
size of a softball. I went to the ER just so someone had record of it
for my new rheumy. They wanted to know at the hospital if I wanted
something for the pain or any treatment, and all I wanted was an x-ray
or mri and written record of proof that my elbow was indeed swollen from
fluid on the joint, that I indeed had synovitis.

I had already gotten in to see my pain doctor by then and was given
oxycontin as well as a medication that works on the central nervous
system for pain for the fibromyalgia called Zonegran. {I actually had
been on it before in 2002, when my optic nerve was swollen. I had
pseudotumor cerebri. No one knew why, but I had severe headaches w/
nausea and other visual disturbances daily. I had also lost some of my
sight. While on Zonegran, it decreased the pressure behind my eye,
causing the pain to go away and my vision returned to normal. I was
taken off the medication after being on it back then until 2003 because I
was told w/ pseudotumor cerebri, after 6 months of treatment, if it
goes away, it won't come back. Well, I noticed that I wasn't really
watching TV anymore, but just listening, then when driving, I could no
longer see the street signs, and then I couldn't tell which way the cars
were facing on one-way streets to know which ones to turn down. Then I
could see nothing, and the headaches returned. The pseudotumor cerebri
came back w/ a vengence. No one understood why, but I was put on a
different medication than Zonegran in 2004. It was called Topamax. It is
used a lot w/ migraines, but it also relieves the pressure. I was just
on an extremely high dose, and I lost a whole lot of weight w/ it.} So
when I went to see the pain doctor and he put me on Zonegran for the
fibromyalgia, I already knew how I would do on it b/c I had been on it
before.

Then I went back to that pain clinic and my pain doctor had left the
practice rather suddenly so I was placed w/ another doctor in the group
who wasn't w/ my insurance. Of course they didn't check on that. I ended
up paying a ton of money out of pocket for an out of network provider.
Then he said I probably needed to up my oxycontin after so many years of
being on the same dose of 10 mg long acting twice a day. He said that
your body gets used to it. I agreed although I wasn't quite sure I
agreed to his decision. He wrote a script for oxycodone 15mg twice
daily. The problem was that this script was not a generic for the long
acting; it was a short-acting medication. The doctor didn't even know
what the heck he was prescribing me. I called the pharmacist b/c I
thought it was odd that it wasn't Oxycontin, and that it didn't say XR
or SR or something like that after it. The pharmacist said it was indeed
short-acting. So I contacted the nurse w/ my concern. He really thought
it was a new dose for Oxycontin long-acting. He apologized and gave me
my original script again. He said he could write me a new script for 20
mg twice a day for the long acting to up the dose. I said "no." firmly
b/c I didn't think I wanted to go up in dose anyway. That same doctor
also said he was going to give me and injection in my shoulder. I waited
w/ my arm out of my sleeve, and he never returned to the patient room.
The nurse came in w/ my fee slip and my script and told me to come back
in a month. He just totally forgot. So I asked to please give me a
competent doctor that was at least in my network. Finally they gave me
the head doctor for the group as my new doctor. One day all patients on
narcotics were ordered to take a urine test to make sure they are
actually taking the drugs prescribed for them. No problem. I voided in a
cup, set it on the counter, and left.

A month later, I came back. The doctor came in and said that my test
came back positive for cocaine and negative for oxycontin. I was
shocked. Obviously, either one of the nursing staff switched it on
purpose or accidentally or it happened at the lab, but the doctor didn't
believe my story b/c he had the results from the lab. I told him I was
going to get a lawyer and everything b/c they didn't even test it
correctly. Drug testing needs to be sealed in front of the patient, etc.
That was not done. I have no idea what they sent as my urine. It was
finally straightened out when I came in a week later and tested again w/
no sign of cocaine and normal levels of oxycontin. It was obvious that
the other urine wasn't mine. They have changed the way they test for
drugs now, etc. The problem is that the first test is already part of my
record. He had to type a letter and put it in my chart stating his
belief that it wasn't my urine. It was a horrible ordeal.

My new rheumy meanwhile started me back on all my anti-inflammatories,
methotrexate, and remicade (an IV infusion for arthritis), as well as
flexeril and skelaxin (muscle relaxers for fibromyalgia). He also gave
me pilocarpine for saliva, the supplements that would be depleted by
methotrexate, and pain patches (non-narcotic). He tested my vitamin b-12
and D levels. They were next to nothing, so he put me on extremely high
doses of those. He did a bone density test as well, which still showed
osteopenia--not quite osteoporosis. He wanted to put me on calcium, but
my bones do not absorb calcium supplements. {Back in 2004, a metabolic
bone doctor tested me out for all kinds of things. He said that I had a
lot of calcium deposits outside of the bone, I also had kidney stones
that were calcium oxalate. He told me that I should cut calcium out of
my diet. Because I had such a low vitamin D, he told me to take vitamin D
supplements instead.} Obviously, the amount of vitamin D that I had
been taking was not enough. Then, when I increased my dose to 2000 IU
per day, my calcium in my blood decreased. It had been incredibly high.
Also, I no longer have the calcium deposits and haven't had any kidney
stones either.

So what I didn't mention was that I also had severe problems w/ plantar
fasciitis, achilles tendonitis, tenosynovitis in my wrists, tendonitis
in my elbows, bursitis in my shoulders, problems w/ my ACL's, my SI
joint, and my neck, and was told that my pelvis looked like it was
crushed in an auto accident.

I've been skin tested 4 times for allergies, and all my allergists have
said the same thing. They have never seen reactions like mine. I am
allergic to everything and w/ a huge reaction. I carry 2 epi-pens and
albuterol. I also have asthma. I have a severe shellfish allergy and
latex allergy--they both cause anaphylaxis. I have many food allergies. I
react to changes in temperatures w/ hives. The sun gives me hives. I
have to have tinted windows on my car. I have so many sensitivities. I
also have endometriosis. I had 2 laparoscopies. I was in menopause for 6
years. I don't even know if I'm having periods or not again, for real. I
was put on the Nuva Ring in 2002, and that is when I began having a
cycle again. Now I keep the ring in to just have 4 periods a year, but I
only bleed for 1 day. So again, I'm not certain that if I stopped the
ring I would still have a period. I had a fertility doctor test my
levels in 2002, and she said I was at the level of a pre-pubescent 5
year old. I'm not even sure what that means. I had periods for years up
to age 21. Then they stopped.

My right shoulder collapsed the day before Halloween this past Oct. I
had to wait until March 29th to finally have it replaced. I have been
working very hard to rehab it. I'm doing very well w/ it, but I'm also
currently in PT for my back and neck, PT/OT for my hands and wrists b/c
of hypermobility EDS, and also using a TENS unit and aqua therapy.

The reason I wanted to share this w/ you is that we all have such
incredible medical histories. Many times we are told that nothing is
connected, and that we have all these different diagnoses. How can one
person who never drank or smoke or did drugs have so many things wrong
w/ them? I was premature. I was born 2 months early, weighing 4 lbs 11
oz. They found nothing wrong w/ me at birth. I believe that I always had
something wrong w/ my immune system that affected immune response to
allergens, and has attacked itself in many ways causing many auto-immune
diseases. I think that they will figure out that a lot more of my
diseases will end up being auto-immune or auto-immune related. So what
about your story? Do you you think there is a connection? Can you
connect the dots?

                                         

Congratulations To....ME! I Received The Versatile Bloggers Award, My Very First Blog Award!

 VERSATILE BLOGGER AWARD!!!!!!!!!

 

 I would like to first start out by thanking Shalunya from Gypsy Shalunya Graceful living under trying circumstances for giving me this awesome award. I am extremely excited to accept it because it is my very first blogger award. I'd like to thank Shalunya, for this truly remarkable award, Susan for inspiring me to use the deep desire to write to start out as a blogger, Mo for being the first person to follow my work as an inexperienced but anxious and eager blogger, Selena for always encouraging me to express more, and Migrainista for being my most devoted follower. Shalunya wrote...

I always love reading your blog and I wanted to make sure I told you so!!! I am passing the Versatile Bloggers Award onto you.  

Rule #1: Thank the person who gave you the award.   Shalunya from Gypsy Shalunya. Rule #2: Share seven things about yourself.   

1. I am passionate about writing, and would love to write for a magazine about health or something like that. I have been secretly writing a fiction novel and auto-biography for several years now. Blogging fills that need to write in me. However, I really enjoy a pen to paper. The books that I'm working on are currently all being done by hand in notebooks. 
2. I was a dancer when I was younger, starting at age 2. I ended up sticking w/ strictly ballet and started dancing for the company St. Louis Performing Arts Centre in MO. It is no longer in business. It was the only Cechetti style ballet in the state at the time. I was in the Nutcracker Suite w/ ballet companies Kansas City Ballet and Dance St. Louis (Missouri State Ballet). I would love to dance again, and although my many joint and connective tissue diseases keep me from physically dancing again, I will always "be" a dancer. No one can take that away from me. In my mind, I am always dancing... 
3. I am living 2 completely separate lives. And in one of my lives that I have kept secret for many, many years, I am beginning to share w/ others my abilities as a clairaudient, a clairsentient, an intuitive (mostly medical), and an energy healer. I'm still in the early stages of understanding it, but I believe my purpose is to help others to better deal w/ pain, lose, illness, and injury as God works through me. 
4. My husband and I are in the process of adopting a baby/a child/siblings. We have been trying to adopt for 6 years and have worked w/ several agencies including the state to adopt a foster child/siblings. The state even lost our paperwork. Now we feel very content w/ our adoption facilitator out of California, Lifetime Adoption. We are at the end, just awaiting a match for a birth mother to pick us. If anyone is interested in finding more about us because you know of someone who is pregnant and thinking about adoption, visit Dana and Jim's Adoption Website. 
5. I love the paranormal and supernatural! It fascinates me! I read and learn all about it from past lives, to ghosts and spirits, to haunted houses, to psychics and mediums, to astral travel, to magic, to animal totems, to angels and spirit guides....and I could go on and on. I even went to a paranormal and metaphysical convention last month in Atlanta, Through the Veil. I met some wonderful people, like Chip Coffey, Chris Fleming, and Christopher Moon--all of which can be seen on paranormal TV programs! 
6. My husband and I have lived together in MO, KY, RI and now GA in our 10 years of marriage and our 16 years of being together (11 of those years were together-together under the same room). Of course, we did stay together a lot when we lived in the same dorm in St. Louis, and I would stay w/ him and his mom in their apartment as well. 
7. Not surprising at all that I have several joint and connective tissue diseases, both auto-immune and not because I have always been so empathic to those around me, feeling what they feel. I have taken on entirely too much pain from those around me in my life, and now have so many chronic pain conditions--I can't even call it irony!  I call it a burden that my body cannot carry anymore. My body's foundation literally cannot carry anyone elses problems, pain or issues anymore. I realized in my late 20's and early 30's that a person must take care of themselves before ever helping anyone else. You cannot help anyone if you are not strong enough to stand on your own.  If someone needed a walker to use to help them to walk, they would not use one that had a wobbly leg. So why would you lean on someone for help all the time, that can't even help herself?  I am helping myself now. My meds are working, I'm exercisng, I had a hip replacement in '03 at age 29 and a shoulder replacement this past March at age 35. So, basically, I'm becoming stronger physically, mentally, emotionally, and spiritually!  

Rule #3: Pass the award onto 15 bloggers who you have recently discovered and you think are are fantastic!!

1. Leslie @ Getting Closer to Myself 
2. Annie @ It's Time to Get Over How Fragile You Are 
3. Maya @ Loving with Chronic Illness 
4. Mo @ Mo Is Blogging...I Think
5. Lauren @ Novel Patient
6. Selena @ Oh My Aches and Pains
7. Kerri @ six until me 
8. Stephanie Lynn @ Sudden Randomness 
9. Kathy @ Fibrocondriac 
10. Judith @ Fibromyalgia and Life Altering Conditions
11. How Can I Explain It To You? Just A Grad Student with Lupus
12. How To Cope with Pain
13. Becky @ Instructions Not Included
14. One Disadventure After Another
15. Lipstick, Perfume, and Too Many Pills a sick girl's quest for normalcy

I love these blogs so much (and Shalunya's and Migrainista's) as well. Of course, Shalunya just received her award in order to pass it on to myself and Migrainista so I'm giving the other well-deserved versatile bloggers their turn for this award! So Rock on Bloggers!!!! Thank you all for giving me so much to read, learn, stop to dwell on for a moment, and some of you who have given me great ideas to expand upon with my blog....

SO HERE'S TO YOU ALL..........................................

VERSATILE BLOGGER AWARD!!!    

When I was first told about the theme being Passion, my mind automatically went to what everyone's goes to...a strong sexual desire...

This edition of Chronic Babe's Blog Carnival went live on June 15, 2010, and the theme is Passion. We would love to hear your thoughts on the topic, which really, could go in any direction!Check out the rest of the Chronic Babe's Blogs!


Hmmm...When I was first told about the theme being Passion, my mind automatically went to what everyone's  goes to...a strong sexual desire...

When you look the word "passion" up in the dictionary, it says,

1. A powerful emotion, such as love, joy, hatred, or anger.

2. 

    a. Ardent love.

    b. Strong sexual desire; lust.

    c. The object of such love or desire.

3.

    a. Boundless enthusiasm.

    b. The object of such enthusiasm.

4. An abandoned display of emotion, especially of anger.

I think when you are talking about someone with a chronic disease or illness, and you ask them to write about their passion, you will get so many answers as well a so many ways to answer it. For me, passion can be used as a powerful, intense emotion. Richard Brinsley Sheridan wrote, "There is not a passion so strongly rooted in the human heart as envy."  I also have passion in my life that is a burning fire, as Oliver Wendell Holmes, Jr. said, "In our youth our hearts were touched with fire [passion]."  Passion can be a feeling of love for another person, or an intense feeling of love for something. And passion is commonly called zeal when we speak of a strong, enthusiastic devotion to a cause, ideal, or goal and tireless diligence in its furtherance. "Laurie [resolved], with a glow of philanthropic zeal [passion], to found and endow an institution for ... women with artistic tendencies" (Louisa May Alcott). So synonyms for passion are fervor, fire, zeal,  and ardor.

I, of course, have a burning passion for my husband. We just had our 10th anniversary on June 10th, 2010, so how fitting it is to speak of passion. Now, we may not have a sex life that others would necessarily describe as "strong" or "sexual," but there is a fire, I swear. After 10 years of marriage, there is still that spark.  Don't worry, I'm not going to go into detail, but although we can't do what healthy couples can in the bedroom, we definitely make do.

Also, I have a passion for my husband that is a love like nothing I've ever felt for another human being. It is a love that so intense, that I would give my life for him.  Now that is the definition of passion. I also have a passion, a love for the environment, for this world. I don't want people to ruin it. This is it people; it's all we have, take care of it! I have a deep connection to people, animals, trees, plants, God, the angels, my spirit guides, and all things that have energy--which is every single thing. Everything has energy, so ever single thing is connected. I feel that connection. I have a special passion for all of those things, God's creation!

Then, there is the passion for a cause. I think that this is pretty self-explanatory. If you or someone you are close to have/has a certain disease or illness, you want to fight for a cure, a treatment or for more research to understand it more.  Everyone out there who has chronic pain from arthritis, fibromyalgia, cancer, etc. wants to find a cure, wants to help those that are in pain like them, wants to support people with the same or similar issues. It becomes a tireless, diligent fight, an endless battle, a passion!  I support causes such as: arthritis, fibromyalgia, AVN, chronic pain, saving the planet, saving the animals, conservation, anything that helps children, and also any cause that will help us to keep our minds open, to reach a higher consciousness, to understand our purpose here, so that this world can achieve a balance of energy and truly be healed!

So this is a list of things that I have a passion for:                              
1. The environment.                                                                         
2. Animals.                                                                                      
3. Unity.
4. Acceptance.
5. Spiritualism.
6. Life.
7. Family.
8. Healing.
9. Friendship.
10. Prayer.
11. My Many Causes.
12. God.
13. My Angels.
14. My Spirit Guides.
15. The Arts: Dance, Music, Poetry, Painting, etc.
16. Food.
17. Water.
18. Writing.
19. Reading.
20. Swimming.

This is a list of what [who] I have a burning passion for:

1. My Husband.

2. My Baby That We Will Adopt Someday. 
3. Max and Cookie "Buddy" (Our Fur Kids). They Are 10 And 13 Years Old.

What I Like To Do To Help Myself When I'm Having A Bad Day...

"Welcome to our fifth edition of ChronicBabe Carnival! We're talking about our favorite self-care tools and techniques. ChronicBabes want to be AWAP (As Well As Possible). But sometimes chronic illness gets in the way and we forget to take care of ourselves. Or we get stuck in survival mode. Self-care can sometimes be a challenge. The bloggers of ChronicBabe Carnival #5 are sharing some seriously useful self-care tools and techniques. Take a look!"

This is an interesting topic because I've had a few bad days--weeks since the week leading up to the Arthritis Walk Atlanta up until now.  It took so much energy to prepare for the day, then finally getting to the day, and actually walking a mile, was a lot more than my body could really sustain.  I can't even believe that I walked the mile without my cane. I haven't been using it since my right shoulder was replaced because (even though I used it in the other hand) it makes it impossible to carry anything. I can't hold anything yet with my arm that had the shoulder replacement, and when you put a cane in the other hand, well, you might as well forget it--you just can't carry anything. I did find a purse/fanny pack that was actually stylish. I can use that!

So then my mother-in-law came into town, and we went to Zoo Atlanta. Although it is a small zoo, it was 90 degrees outside, humid, and I still was fatigued, exhausted and in a lot of pain since the Walk. Also, it may be a small zoo, but it is all hills!

After she left, I just collapsed! I decided that since my orthopaedic surgeon told me that I can go back to the pool at the gym to move my arm around, that would be a great idea to do on Saturday for the long weekend. I went there for 45 minutes while my husband was working out. I started in the hot tub just moving my arm all around. Then I moved to the pool. I can't swim yet because I can't move my arms fast enough to keep afloat, so I walked back and forth, moving my arms in the water with some resistance. It didn't seem hard, and I really didn't feel tired when I finished. Oh, but when I got home, I hurt so bad! I actually took 3 pain pills that day! I went to bed and slept until 10 o'clock the next day. Then on Sunday before Memorial Day, I slept all day long; I just couldn't keep my eyes open! I looked at the clock and it was 11, then 2pm, then 4pm, then Jim was coming home from work and it was almost 6pm!

So this leads to what I can do to help myself when I'm having a bad day...

Obviously, one of the best things I can do for myself is get some well-deserved sleep. It's amazing; I can't sleep worth a damn at night, but when I need to, I'll sleep my whole day away on the couch. It doesn't seem to make much sense to healthy people, but I'll bet you chronics out there get it!  Also, I always feel better when I can easily grab something to eat that is healthy. I really enjoy Kashi. They have good granola bars and other snack foods as well as frozen foods.  It is hard to have to cook when you don't feel well.  I really love to cook, but when I'm so fatigued that I can't stand longer than 5 to 10 minutes at a time, cooking is off the list.  So then there are warm baths...I love a warm bath. Sometimes I'll sprinkle some epsom salts in there. I love natural shampoos and conditioners and body washes. Right now I'm using Tea Tree Oil shampoo and conditioner and for my body wash--pomegranate acai berry wash. I also use Tea Tree Oil in a dish and light a candle under it to burn the oil. I love to use aromatherapy. I find it relaxing. It helps me to feel better mentally as well as physically. I try to find time to get a full body massage or a foot massage or even a pedicure. It's nice to be self-endulgent sometimes!

I like to read and write--journaling is very therapeutic, and actually that is how I began blogging in the first place. I enjoy nature--God gave it to us, and I believe we should take advantage of it more when we are able to. I try to walk the dogs more often. On bad days, I walk them one at a time, and I take them on shorter, more frequent walks instead of longer less frequent walks. Music can be relaxing if you choose the right kind, but of course, it also depends on your likes and dislikes as well. I prefer country music and classical when I'm having a bad day. Anything any louder makes my head hurt more.

I have sparked an interest in energy healing. I have gone to an energy healer and looked into other healing arts. I am a very spiritual person, and I firmly believe that when that person places her hand on or above me, God is working through her. Miraculously, I can feel God's energy pulsing through my body and literally "healing" my pain. I would recommend it highly. The down side is that it is not covered by insurance usually and can become expensive. Try it once and you'll see! Prayer and meditation can also work very well. Also, try to use healing energy on yourself. It is amazing!

I also find that being able to exercise at the gym, for me it's in the pool, is really great if I'm able to. Since I'm unable to actually swim right now, just being in the water is therapeutic to me...

Connecting with others is important to me because I tend to go inside myself on bad days. I withdraw from the world. I like to be able to go online and connect with my different network communities, blog communities, and email friends and family. I also like to be able to pick up the phone and talk to people if I need the company. What I've found interesting is that when I'm having bad days, I'm drawn more to those who are sick like me, but when I feel good (it's all relative) I am able to communicate with anyone sick or not. It seems like it's harder to keep my attention with those that don't understand because they don't live it. And of course, let's face it, even good days, are bad days for those that are not sick, so how can we even explain that our world is collapsing around us? It is just easier to be around those who really get it on those really bad days.

I love to just relax with my furkids on the couch and get all caught up with the Lifetime Movie Network! That is my ultimate bad day revival kit. Take a warm bath, a walk with nature and the furkids. Relax with my favorite book, sleep for hours, awake with my laptop to catch up with friends, grab quick snacks all day long, and then give an old friend a call on the phone. If she stops by, that would make it even better!

Am I Allowed to Be Sad, Angry and Upset on Mother's Day?

I know that Mother's Day is such a lovely day for most people, but to be honest, I hate it!  I try to avoid it all day long. I hope that I get my own mom's voicemail so that I don't have to speak to her and can just leave her a message.  It's just too painful for me. I always send her a card and a gift card to someplace she really likes. This year I sent her a gift card to Talbot's. She works there and loves their clothes. I also send a card to my grandmother. I only have one remaining grandparent alive--that includes my hubby's as well, just the one, Gammie--and she lives in a nursing home with Alzheimer's Disease, if you can really call that living. Then, I send a card to my mother-in-law with a gift card also included. This year she received a Target gift card. This way, she can pick out anything she wants. And of course there's my other mother, my friend Liz's mom Kim. I always send her a mother's day card too. Liz was always like my little sis, and she was even my maid of honor in our wedding, so we share our moms. What we don't get from one mom, we receive from the other.  It just seems to work out good that way. This year I got 2 extra mother's day cards because we have 2 friends who had babies in the fall, so this is their first mother's day! 

Ok, fine on the cards...

Besides that, I like to stay to myself and not really talk to anyone, or stay busy to forget that it actually is mother's day.  I always thought that we would be married and have tons of kids by now. Jim is 36, and I'm 35.  When my parents were 35, I was already 15 years old, and my brother was 10. The same goes for Jim; he was already 15 as well.  I just always thought that would be me. I just thought we would start a little bit later of course because we got married when we were 25 and 26. I thought we would have a baby when I was 27 or 28, and then when I was 30, and then again when I was 33, another at 35, and our last at 38. The perfect house full of kids! I always imagined a house full of children's laughter; children running all around, a big kitchen table--long enough to fit everyone--bunk beds, a tree house, and a tire hanging from an old oak tree.  That is how I pictured it. Of course, when you picture a house full of children running and screaming, you also picture yourself "not sick".  So, when we found out I had all these chronic illnesses, I scaled down my dream a a bit.

I imagined us with 2 children a couple years apart, a boy and a girl--the girl is older. She has dark curls, dark skin, and blue eyes, and the baby is a boy with lighter skin, lighter hair and blue eyes.  And yep, you guessed it, I didn't carry them in my tummy.  Ya know, I never ever imagined that part though. I never thought about what it would be like to be pregnant. So I'm OK with missing out on that part. I always imagined that my kids would all look different, and that none would look like me.  Kinda funny, right? So, yes, you guessed it, I always imagined that our big family would be an adopted family.  And now, I believe that little girl will be adopted, but I'm not so sure about that little boy.  I'm thinking for our second baby, we might think about a surrogate. We would use Jim's sperm and a donor egg. So yes, that baby would still not look like me. It's OK with me though still. I don't need my kids to look like me. I just want kids soooooo badly!  Like I said, I always pictured us with a family. Now here we are married nearly 10 years with no kids, well no human kids. We do have 2 furkids who have brought us a lot of love and joy, but nothing near what 2 human kids would bring us. I just will not feel fulfilled without human children.

So today when I called my mom, as her phone rang and rang, and I prayed and prayed for her voicemail, and suddenly I got it..."Hi this is..." Oh, thank God. I don't have to talk to anyone about mother's day. I'm off scott-free! No sooner did I leave her a message and hang up did my phone ring.  "Did you just call me? I missed a call and when I looked at my missed call, it looked like your area code." Damn. I have to talk to someone on mother's day, a mother, and my mother at that.  I told her happy mom's day and let her know that her card was on the way. She asked what I was doing and wanted to know if the dogs got me anything. She wanted to know exactly what was going on with the birthmother that is interested in us right now to explain it to everyone that was with her at the St. Louis Zoo. It was her and Dad, my aunt and my cousin, and her friend (my other mother) and her family.  For me, it was just like someone rubbing mother's day in my face. They were celebrating the wonderful day, talking to me the odd girl out, wondering what all the details were in the "other way" to become a mom on mother's day.  I explained it to her, but as each word came out of my mouth, I became more and more upset. I really didn't want to talk about it on this particular day.

He will be with you also, all the way, that faithful God. Every morning when you awaken to the old and tolerable pain, at every mile of the hot uphill dusty road of tiring duty, on to the judgment seat, the same Christ there as ever, still loving you, still sufficient for you, even then. And then, on through all eternity.
-- Thomas Kempis

So that is why it is so tough for me to wake up on mother's day. I don't want to even get out of bed and face the day.  It's very depressing to me. I ask myself sometimes questions that I know are not worth asking, that I know have no answers. I want to know why? Why does everyone around me seem to be having babies and getting pregnant, and we keep waiting and waiting--for six whole years!  I feel like we could have had a six year old daughter by now. We have such open preferences, Jim has a great flexible, good paying job. I'm a nurse, even though I stay home now. I ask God all the time, why we are being punished. I know he's not punishing us. I know that it just hasn't been the right time for us. I know that all the other times in our lives wouldn't have worked out with my illnesses, with our moving around all the time, etc. But I can't help but question things because, well, I'm human, and that's what we do.  I have gotten better at allowing myself to "let go and let God," but it is difficult.  Everyday is a learning experience for me. I have to remind myself each morning and each night, that I'm not in control of this adoption. These scripture passages and quotes I have even attached to my email signature. It reminds me that I am not in control and that God is.

God is in Control of My Adoption. 

Fear not I am with you… Isaiah 41:10 

Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord. Psalm 27:14

We have chosen adoption as our option.  

God will show us the way.

So today was a particularly tough struggle. I think it is a combination of my recovery from a shoulder replacement, the fact that I am due for my Remicade infusion in 4 days, it's mother's day, I made the mistake of looking at everyone's mother's day wishes on facebook, so many of my friends either just had babies in the last year or are due in the next year, the waiting part of the adoption is so hard, no one in my family has donated to my Walk Team (I take this personally), and I'm trapped at home because I can't drive yet. The recovery from my shoulder has been easier than I thought it would be in some ways and harder than I thought in other ways. The joint pain is gone completely because it was replaced, but I still have a lot of muscle pain that I wasn't expecting. I didn't have that with my hip replacement. The skin around the incision gets very taut and stiff. I have to pull on it every so often to stretch the skin. It's weird. I'm not sure if it has anything to do with my connective tissue disease or not.  I feel like my range of motion is really good. It is already better than my other shoulder. I still have a long road ahead of me, I fear though.  Always, by the week before my Remicade infusion, my body is ready for it! I already said it; I hate mother's day!  There are too many reminders that I have no children, that my life keeps being put on pause while everyone else's is on play, and that it is yet another year that my family (including my own mother) is in complete denial that I have a chronic illness or that I had a serious surgery.  Being stuck at home makes me think about all of this stuff more and more. I'm not so sure it's all that bad though. It could be worse, I guess, if I began to sink deeper and deeper into a depression. But for me, I think it is helping me to see things as they truly are.  I just would like to be able to escape them once in a while, which is a bit impossible right now.

Jim knows how hard this day is for me so he got me a card from our furkids and took me out to get a haircut. I'm gonna do my eyebrows later.  I know my furkids are very thankful for their mommy!

I'm trying not to be so negative, but I feel like with everything that I've been dealt in this lifetime, sometimes I deserve to vent every once in a while!  Ya know the Arthritis Walk is coming up on May 22nd in Atlanta. I have been doing this fundraising thing for a couple of months now on facebook and with email.  I raised $275, which isn't bad considering that I can't even leave my house. The thing is that all these other people send emails out to their family and friends, and they get donations from their family right away because they're family. I have not had one single family member donate to my walk team. I have had one really close friend donate that I've known for 10 years, a friend that I have recently gotten close to in the last 2 years, a couple of friends from high school (which was let's just say a long time ago), a friend that I really hadn't seen since college, someone that works with my husband and the sister-in-law of a friend of my mom's.  That is quite a list! Can you believe that all of these people donated before my family? Now I know that it's not very good economic times, but you can't tell me that for a family member, you couldn't find something in your life you could give up to give even 10 bucks. You could not go out to dinner once or twice and eat at home instead and donate what you saved to the Walk. My friend here in GA told me that she didn't have the money to donate. I told her that was OK. I said we would love to have her walk with us. She also has arthritis, so for us, we are walking for her too, not just me.  I would have loved for her to walk with us, and even if she couldn't donate, to know that she supported the walk in that way would have been enough for me.  She replied to me and said that she couldn't walk this year. She said that she supports our team and hoped we did well and had a great day at the walk.  How wonderful is that!  Not one of my family members said that to me!  She actually even ended up donating anyway. She sent me an email that she did her bills for the month and had money left over so she donated to our team.  That was so nice, and I will never forget that loving gesture!  

I do admire all you mothers out there; don't misunderstand this post. Mothers have the hardest job in the world. They have the longest hours, the lowest pay rate, and the least time off.  Their children and spouses often forget to tell them how much they appreciate them, so they work without incentives as well. But, they have the most rewarding job in the world. Once you sign on to this job, you will never want to quit! God Bless all the mothers and mothers-to-be!

The Bluebird's Broken Wing...

The other day, I was trying to get my toothbrush and toothpaste out from the medicine cabinet. I have one of those monster big handled battery-operated toothbrushes because I have no more connective tissue in my hands, so it's hard to hold onto small things like normal sized toothbrushes. Well, anyway, the toothbrush fell out of the medicine cabinet hard and broke my ceramic bluebirds right wing off! I wanted to cry. I've been overwhelmed with everything ya know. With a right shoulder replacement, I didn't realize how limited I would be. Although I choose to write most of the time with my right hand, I can do just as much with my left hand because I'm ambidextrous. Except of course, my left thumb has been extremely messed up for about 3 months, so it's a bit harder to do things with my left hand than my right.  So, I've been more emotional about things too. I've also been clumsy, sooooo clumsy. I cannot tell you how many times I've run into the door frame WITH MY NEW SHOULDER ARM! What is wrong with me. Just today I hit my right elbow in the doorknob. I still have the bruises on my elbow from my shoulder replacement shoulder, and now I have a brand new lump on top of that.

So I got to thinking after the poor innocent ceramic bluebird's wing was shattered...

Was there a deeper meaning to it?  Was there something to it that it was it's right wing that collapsed, and it was my right shoulder that collapsed?  Did it mean anything that a bluebird means "happiness," and I broke it?  Not only did I "break" "happiness", but I symbolically kept it from flying and being happy.   Was my shoulder collapsing keeping me from being happy?  Did I feel broken?  Was I unable to fly?

OK, I have a lot of alone time, true...

But ya know when you have a disease like I have, you can't just superglue my collapsed joints back together. The blue ceramic bird you can. The ceramic bluebird can't even fly. Although it is in a still position of it being in flight, it still cannot really fly. Although, I cannot really fly, I can take flight in my goals, in my wants and dreams.  I could soar.  I want to soar. There is so much I want to do...I want to soar. As a matter of fact the name of my Walk Team is AV'N Fun "Psorin'" Above Arthritis!  I spelled it that way because I have psoriatic arthritis.  Get it.  Yeah, I know, pretty creative--the other part is short for "having fun", but stands for AVN (avascular necrosis).  Yep, I just keep 'em coming!

So, although I'm at a rough spot right now in my life, I'm working hard to get back in flight again. I need to soar again!  I'm really only that bluebird of happiness when I can fly, and when I can fly high!  The pain is really not too bad, at least not in the shoulder. It feels more like muscle pain. I'm working to rebuild the muscle that they cut through to place the new shoulder. Now, my knees, feet, ankles, elbows, wrists, neck, back, and hips are another story. I'm due for my Remicade infusion next week Thursday, so my body is letting me know by swelling, being hot, and showing redness.  But it's all my normal routine stuff!

To help with that happiness, we are going to see Iron Man 2 at the drive in movie theatre tonight with friends!  I think I will really enjoy that! It's too bad we can't fly there! LOL!  I guess driving is fine, and relaxing in the car with lots of snacks and candy that's really bad for us!!!

MMMMMM!

My Take on Marriage, Love, And That Confusing Little--No Wait, BIG Thing--That Gets in The Way; Chronic Illness

(This post was presented in  ChronicBabe Blog Carnival #2: Love, Illness and Other Confusing Things on April 20, 2010.  It was the second edition of the ChronicBabe Blog Carnival, "bringing you a big new batch of awesomely babelicious perspectives on love, sex, relationships and chronic illness...working "hard with co-organizer Fibrochondriac to create a real diversity of writing; in fact, she does a lot of the work, Babes, so we owe her a BIG thank you.")

My mom always told me that marriage isn't easy.  You have to work at it--both of you.  Of course if you have to work too hard, I'm not sure the marriage is worth it, but sometimes within the marriage there are challenges that take every bit of your strength, determination, and perseverence. If one of you has a chronic disease, you know what I'm talking about.  With the chronic disease living inside the marriage, sometimes the marriage itself doesn't get the work it needs because so much time is invested in the disease, that there is little time for anything else.

I'm going to talk about my marriage to my loving husband Jim, how we work through the chronic disease challenges as well as day to day issues that affect every married couple.  First of all, just so you know that we have experienced married life for a while with lots of unexpected events, I'll start there, then I'll add the chronic stuff to it and tell you how we handled it as partners.  We will be married 10 years on June 10, 2010. We dated for 6 1/2 years and lived together for 2 of those years before getting married. We have lived in St. Louis, MO; Lexington, KY; N. Providence, RI; and Decatur, GA.  We have had our two senior dogs for 10 years (Max, 13; Cookie, 10). They have lived in every city with us. We have been trying to adopt a child for 5 years now, since we were living in Kentucky.  We currently have no children.  We both went to college, having met as undergrads.  Jim went on to Graduate School to get his Ph.D. He is now a professor. I got my Bachelor's in Nursing.  I worked as a Registered Nurse, and my specialty was a Diabetes Educator.  I am now on disability, which is reviewed every 3 years in Georgia.

We met in college, had the same values, beliefs and religion. Our families were both huge and lived in the same part of St. Louis. Everything started out to seem like a storybook romance and life together.  For the purpose of my blog, throw out any idea you may have in your mind that life with that special someone is going to be like s storybook romance. It ain't happening!  I've said this before in my other blog--"you had me at hello" is only in the movies.

Ask yourself what causes stress in a marriage. Main stressors are finances, kids, work, moving into a new house or a new state/city, losing your job/changing jobs, school, death, and a new baby.  There are others, but you get the idea.  There is one big stressor that I didn't mention on purpose because for many, it causes so much stress that the other stressors pale in comparison, or the other stressors become even more stressful because of it.  That stressor is the big thing that gets in the way within our marriage--that thing is chronic illness.

I can honestly say no matter what seems to be going on at a particular point in our marriage, chronic illness finds a way of forcing its way between us. When we said our vows, we said, "in sickness and in health," but seriously, we never asked for this...

Chronic illness always has to be centerstage. It doesn't care if you've planned a trip for months, decided to accept a promotion with more hours, or if now is the time you and your significant other have decided to start that forever talked about family.  There are so many times that I am feeling great (remember it's all relative), and Jim has a huge work dinner or party. It is gonna take every bit of energy that I can find to over-power that chronic illness this time around.  No matter how many times it comes between us in our marriage, we are just never prepared enough for it. It is depressing, overwhelming, and just makes me so angry sometimes.

We have always wanted children, but were never able to try because of my chronic illness being in the way all the time. Then, 5 years ago, we began the adoption process because chronic illness had gotten so in the way, that my body cannot even carry a child to term now. My joints are just too damaged. Thanks again, chronic illness for your time.  I don't think, unless you actually have a chronic illness, that it is understood how much of a part of the marriage chronic illness is...Let's see, how can I really get this across to you?...

We moved away from our families in 2002. We were the first of both of our families to leave, and we moved to a city where we didn't know anyone.  We were so excited, but chronic illness showed its ugly head so strongly then, that you have to wonder if it has a mind of its own...We had no one there to help us. I had 6 surgeries in our time in that city with just my husband, myself, and chronic illness. One of those surgeries was a total hip replacement. I was 29 years old...

I tell people constantly that having a chronic illness in our marriage only made ours stronger. We only had each other to lean on. By leaning on each other, our marriage became so powerful, and we realized we had chronic disease just where we wanted it. We could do it because we loved each other enough to overcome any of the obstacles that chronic disease threw us. I have written in some of my other posts how humorous it was to have Jim help me recover from a hip replacement. He would bathe me, shave my legs, and wash my hair. I have many of my hip replacement antics in my other posts. I figure, if you can't laugh at yourself, what are you gonna do, cry?  Well, I didn't feel like crying at that point in my life.  We were just beginning this new chapter in our life together, and I wanted it to be a comedy and not a tragedy.  I figure there is nothing wrong with that.  You realize how much that person you are with really loves you, or doesn't for that matter. I know that Jim loves me, otherwise, he would have left me in Kentucky back when I was 29. I would have been OK though. I had a brand new hip, and I am a positive person. I'm glad we stuck it out together though. We only got stronger, but so did chronic disease, only to keep taking more and more of my joints.

Now I just went through a shoulder replacement. It hasn't even been a month. It's been about 3 weeks since my surgery. I'm doing OK, but I'm not as young as my last surgery, and really not as young as my last joint replacement. I'm 35 now!  Wow! I feel like so much has changed, but when people look in from the outside, they may not see it like we do from inside.  We still have the same dogs since before we were married, no kids, and we look almost exactly the same as the day we walked down the aisle.  But ya know we have changed so much. We are so strong, so much more than we were before chronic disease really gave us a run for our money.  Although I didn't actually get a diagnosis until 2002, I had been sick since I was a child. I missed a lot of school, had a horrible immune system, and always had problems staying well. But after we got married and moved away, chronic disease just seemed to try really hard to be the third wheel in our marriage.

This time is a lot tougher on our marriage, I can't lie. We are in an apartment and not a house this time around. I don't like Atlanta as much as I liked Lexington, KY and N. Providence, RI, so I'm not as happy or as content. We seem to be taking on so much. Jim is working all the time. He leaves early and comes home late. I do a lot of the housework and cooking. I take care of the dogs, and they are getting old and need a lot more care. I am involved in volunteer work at a pregnancy center and at the local Arthritis Foundation. My medications are so expensive, and I have to fill them every month, as well as go every 4 weeks to the infusion center for an I.V. We are at the waiting stage for the adoption this time around. We have never gotten this far along. On top of all of that, I'm about 3 weeks out of a shoulder replacement surgery. My right shoulder collapsed the day before Halloween. I woke up that morning, and couldn't move my right arm at all. I knew what had happened. It had happened before to my left hip, but again, we just weren't ready for it to happen at this stage of the game, ya know.  So, we had my mother-in-law come before my surgery to help out with cleaning, laundry, dishes, the dogs, etc. before my surgery. Then while I was in the hospital, she got the place all ready for me to come home. I came home to a gorgeous home--clean and organized, and she had let the dogs out every 2 hours besides. She left the day I came home, and then my parents arrived 2 days later to help out.

One thing you need to know is: don't sweat the small stuff. It's so true. I have been so worried about my home being so messy, dishes in the sink, laundry not washed, and things in the wrong place.  I don't think anyone else cares about it but me, so why be so worried about it. So I've let it go. Yes, I with OCD, who has to always be in control, etc., has let it all go.  I should know better, actually. When you have chronic illness in your life and in your marriage, you are not always in control. Sometimes it runs the show. Sometimes it decides that today you stay in bed, tomorrow you might be able to put some clothes on, etc.  That's how it is with chronic disease--so you better be ready to drop everything and cancel at the last minute, and order in instead of cooking, and go one more day in your PJ's because you just can't get around to getting dressed again.

So back to love in our marriage...You know love is there when your significant other is still there pushing through the rough times with you and chronic disease. You know he loves you when he makes sure you feel OK, when he still asks even though he knows you feel like crap. You know he loves you when he asks you all the time if you need anything.  With this crazy busy time in our life right now, I still know he loves me...He always comes home to me no matter what...He didn't leave me when he knew I was gonna have another joint replacement, and I know he didn't fancy the recovery period of the first one. I know he loves me because he comes home and finds time to do the laundry when he can, washes the dishes before they cover up the countertop, vaccuums the carpet when the leaves and flowers are brought in on our shoes and on the dogs paws, feeds the dogs twice a day everyday and gives Max his insulin after each meal--he's even getting more patient with the dogs because he knows I want him to be. Let's face it, all you people out there with chronic illness that stay home all the time, we have a lot of work to do without having a job, so when he comes home late every evening and then does my housework, I know it's not easy for him.

Also, with the shoulder replacement, I've been sleeping on the couch since I got home. It is just more comfortable for me because I can sleep sitting up. In bed, I lay too flat...He misses me sleeping next to him in bed. I miss him too. It is lonely when you have slept next to someone for all these years, and suddenly you find yourself alone.  Well, the dogs sleep next to me, so I'm not completely alone, but you get my point...

I know he loves me because he does my arm exercises with me. He gets up in the middle of the night to check on me because he thought he heard me walking around.  He takes me to all my doctor appointments. He drives slowly over bumps and potholes so that my shoulder doesn't hurt. I just know that he loves me.

Still, everyday we can't help but look chronic disease dead in the face. I have a 5 inch long incision going down my arm from my shoulder replacement. I don't even think about what it will end up looking like when it heals becaue I already have 3 scars on my legs, 4 other scars on my shoulders, and 5 little scars from my gallbladder. I don't even think about the marks that chronic disease has left to remember it by. I wonder if he does though...I wonder if he thinks about my untouched body that he originally fell in love with...Do all these surgery marks take any of that attraction away? It doesn't seem like it to me. It seems like he just loves ME!

It does seem like times are a lot more trying right now for us in our lives. Adding chronic illness to it only makes it that much harder to deal with normal marriage issues and concerns.  For instance, it is so much harder to deal with an adoption homestudy when you have a chronic illness. You want so badly to show that you are going to be good parents and that you will have no problems taking care of a child. The truth is, I'm scared to death about having a child. We know that is what we want...That is the way we have always seen it, and we won't feel fulfilled without a family.  It won't be a real family without a child or two.  I'm just scared that I will be seen as not good enough to be a mother because of chronic illness. We have overcome so much in our lives not in spite of chronic illness but because of chronic illness...I think that says a lot for any kind of relationship. If you love someone enough, you will make it work together. That goes for a marriage, as well as other relationships, including special friends.

Since I mentioned these special friends, I'd like to say that because of these special friends, we have gotten through some difficult patches as well. Since my surgery, I have spent a lot of days home alone while Jim is at work. These wonderful friends, of whom I love, have brought meals and treats and flowers and taken me out of the house and just came to visit and talk with me for hours and hours.  Thank God for those that love us!

Again, I stress, we do not overcome so much in our lives in spite of chronic illness but because of chronic illness...I think that says a lot for any kind of relationsip when chronic illness is a part of it!

Pain, Fatigue, Sleep...

I must admit that the medication that I'm taking for pain is really controlling the pain. I begin to feel the post-surgical pain 4 hours after I take my pain meds. They are prescribed every 12 hours and every 6 hours. The pain that I feel after 4 hours is not the same as the pre-op pain that I felt from the AVN where the joint collapsed.  It is where there are bruises and at the incision.

The deep bone pain is completely gone!  The same thing happened when I had my hip replacement. The deep bone pain was gone immediately after the hip was replaced.

So I must say, overall, I would say that I'm happy with the pain control.

I am very tired and fatigued. I really need to use this week to get plenty of rest and caught up on my sleep. I'm sleeping well at night as well, which has been a long while since I did that.

I was due to have my IV infusion this Thursday, but have to wait another week to give my body an extra week to heal. That will be kind of tough because my body knows and feels it's ready for the infusion.

I see my surgeon on Monday, and I get my bandage taken off and my order for PT.

Until then, I will continue to wear my sling while I sleep and go out and take it off when I'm at home.  I'll do my exercises 3 times a day that were taught to me at the hospital.

I am getting a little better every day...

Visitors...

I just have to say that my parents left yesterday after staying with us for 3 nights. My mother-in-law had been here for 5 nights prior to my parents coming as well. She came 3 days before my surgery, and left when I got home from the hospital.  I had our place totally clean and organized, ready for people to visit as well as for me to come home, knowing that it will be a while before I can really clean like that. She was wonderful!  She helped with the dogs, did the laundry, the dishes, and cleaned the entire house until it was spotless!  When I returned from the hospital, she helped me to change into comfy PJ's and made sure everything was ready for me while I was home since she was leaving that afternoon. She even had already washed and folded her sheets that she slept on.  While I was in the hospital, she took the dogs out every 2 hours, made sure they always had water, cleaned everything (even what was already clean), went into our bedroom and looked for clothes to wash and did loads of laundry and folded or hung them up, so like I said before, she left our place sparkling clean. I really have to thank her lots and lots. I wish she could come back, actually.

My parents came then. My parents had so much fun while visiting. They enjoyed their vacation. They had us take pictures of them in front of our flowering tree outside that they just fell in love with.  But they were only here from Friday at 3:30 p.m. to Monday at 9:30 a.m.  They were really only here 2 full days!
We went out to eat for almost every meal, went to every shopping center/mall, went out for ice cream, and we drove all over showing them around the area where we live. I went back on my chemotherapy medication that I take on Sundays, so I'm back to watching what I eat so I don't get sick.

Yes, I was able to do all those things with them, but I believe if no one came at all, I wouldn't have gone out to those places at all. I am so exhausted that yesterday and today all I've done is lay around and rest or sleep.  Since I have psoriatic arthritis and fibromyalgia besides the avascular necrosis that led to my shoulder replacement, now I am totally flaring. I overdid it. There is no other way to put it. I can't even put it any simpler. My parents don't see me but maybe a couple times a year though.  So they don't realize how sick I am. They don't understand that with chronic illnesses, we don't complain because it is what we live with day in and day out. So yes, a lot of times I will push myself even harder around people that don't see me as often. For my mom especially, everytime she sees me, she thinks I'm doing great and tells that to anyone and everyone.

I need to just stop and rest now.

So my mom said thanks for making her trip so enjoyable. When they were packing their car to leave yesterday morning, my mom said that she didn't think they ended up being much help. She said that she thought they were a good "distraction" from the pain and the side effects from the pain meds.  I didn't change out of my PJ's. I lay on the couch while Jim walked them out to the car.

I just wanted to cry.

I have been trying to get some laundry done today--8 days since surgery--but I have to do very small loads since I can only use one arm.

I sit here trying so hard to keep from.................................................................... CRYING!

This Time I Really Did Give My Right Arm...At Least My Right Shoulder...

Well yesterday morn, I had a humeral head replacement surgery at Piedmont Hospital in Atlanta, GA.  The surgery lasted 2 hours. I did fine in recovery, and got to my room around 3 pm. They gave me a nerve block in that arm, along w/ general anesthesia.  I actually fely no pain yesterday, the day of surgery...of course, I knew it would be short lived. I was told by my surgeon that a normal sized adult who has a nerve block like I had, would have it wear off by midnight.  He said that for me though, since I'm so small, it probably wouldn't wear off until 2 a.m. Well, I proved him wrong.  My block wore off at 10:30 p.m.!!! That just goes to show you that when you take as many drugs as I do, your tolerance for those kinds of drugs goes up.  It truly is amazing.

So today, I woke up and thought, "who the hell beat the f*@& out of me in my sleep?"  It was a complete 180!

Today, I had 2 shots of morphine in my ass, oxycontin 20mg 12 hours apart, and 10mg of oxycodone every 3 to 4 hours.  It has been tough!  My doc changed my dressing and thought it would be a hoot to move my shoulder in a complete circular rotation!! WTF!!! Then P.T. came to work on my exercises!  Again WTF!!!

This is supposed to be the worst day--the day after surgery--2nd post-op day!!! I've almost made it through.  Tomorrow is another day!

I Ask God Today For Strength...Oh, And By The Way, Could You Also Take My Pain Away If You Have The Time?

Oh my, it is one of those days, where it hurts too badly to get out of bad, but too much to stay in bed!  I HATE these kind of days.  Why am I having a day like this, on a day like this?  It seems like it is going to be a gorgeous day today.  The sun is shining, the air is still, and it isn't as cold as it's been lately. And yet, I am having THE WORST DAY that I've had in a long time.

Ya know, on a day like this, the first part of my day is to ask my God to please give me strength. To ask for strength is a big thing.  I need strength to get out of bed, to get myself dressed, to take the fur kids outside, to bend over to clean up after them outside, to feed them, to draw up Max's insulin, to inject his insulin, to make my breakfast, to clean off my plate, and to get myself to look at least "presentable" before I step out the door to face the day.  I ask God for strength as I try to hold my throbbing hands on the steering wheel. I ask for strength as I feel the tears build up, when I realize I can't reach with my right arm to change the radio station. I forgot for a brief moment, as I do sometimes first thing in the morning, that my right shoulder had collapsed. I ask God to give me strength as a small amount of anxiety begins to build up inside of me as I remember that in 5 days, I am going to have a very serious and invasive shoulder replacement surgery. I take a deep cleansing breath, and suddenly realize that today is one of thoe days that I definitely need 2 deep cleansing breaths, so I allow myself to take another. And I put the car in drive and off I go to start my day!

Strength is an important power to have over yourself, your day, your body, (I tend to separate myself from my body, especially on very painful days, because I am not my disease, and my disease has taken over my body, but it has not taken over ME!) what you say, what you do, and what you choose in life or just on a particular day or moment.  Strength is a wonderful power and quality to attain.  I believe you don't just have strength. You have to work for it, ask for it, and be rewarded with it.  God will give it to you, but it will not be handed to you wrapped in a pretty box.  In order to get strength, you must be faced with struggles, fears, or something that you have to face head-on.  If you are able to overcome it, fight it and win, or walk away without avoiding it, you have gracefully accepted the gift of strength.

Today, I am moving, and continuing with my day head-on! I am not giving up. I am not crawling into bed and whining about the pain.  I am taking a hot bath, exercising my joints, praying to God, massaging my joints,etc. I am trying to overcome my worst enemy--PAIN.  I know that by the end of the day, I will have received a beautiful package from God with love filled with strength, that I worked so hard to receive.

So when I ask for God to also take the pain away if he has the time, eventually, the pain does get better. I know that if I stay strong and stand up to the pain, it will go into hiding.  I like to add a little humor, even talking with God. I am not a God-fearing person. I believe that he is a humorous God.  I think that a good laugh always help to get rid of some of the pain, and God can always join in the laughter.  God is always with me, and we are great friends. He is my father, my brother, my friend. She is my mother, my sister, my friend as well. I see God as a Father figure as a male, but I also see God as a female. I tend to pray to God, the female when I need help in an emotional sense. If I need help with a family problem, with self-discovery and spirituality, and things that are more personal, God is a female to me. When I ask for strength to get through pain and discomfort or something that I would ask my dad for help with, I see God as a male.  So for help with the whole pain and strength, I see God as a father-figure.  When I want to just talk to someone, for encouragement and love, I talk to my female friend, God. But God as a whole is humorous overall, and has a sense of humor.

How to Cope When Things Get Too Painful/Overwhelming!

Today, I woke up at 6am to give my one furkid a drink and take him outside. I've been having to devote so much of my extra time and energy to taking care of him (which already is not a whole lot to be handing out). Max is his name.  We didn't name him; he already had his name when we adopted him. He is a Silky Terrier, and he looked like a big Yorkie (well all 13 pounds of him). We were told that he was 3 years old when we adopted him in Nov. of 2000, right after we got married.  We already had a 9 month old puppy at home, Cookie (a Jack Russell, Beagle, Spaniel mix). I wanted to get him a friend, a companion, a brother.  Max was hit by a car 6 months before we adopted him, and had his back leg amputated. When we got to PetCo, Max was in a cage all alone, and no one was even looking at him.  We ran to his cage (my mother-in-law and myself), the rescue group volunteer came up to see if we needed any help. I said I had read all about Max in the newspaper and that I was there to adopt him.  They looked at me all surprised. You don't want a puppy?  Nope, I wanted Max...Max had went through 12 foster homes, and he was ready to come home, to our home, where he belonged...

Max remained perfectly healthy until 2007, when he developed Cushing's disease--an auto-immune disease that affects the adrenal glands.  It causes the adrenal glands to produce too much cortisol.  Cortisol is a hormone, a steroid. It is like he is on steroids all the time--constant hunger, thirst, change in behavior, etc.  He was started on a medication that was like a chemotherapy drug. It basically attacks the adrenal glands. If it attacks them too much, it can obliterate them.  Exactly one year ago, he went into remission. No one knew why.  We stopped the meds, and he was doing great.  Then, in Nov. of 2009, he began to have accidents in the house. I took him for an urine test at the vet. When they were doing the urine culture, they used an ultrasound to guide the catheter, and that is when they noticed something in his bladder.  He had bladder stones!  We scheduled for him to have surgery.  I was torn.  He was 12 years old, and had already been through so much. I wasn't sure if it was a good idea to put him under anesthesia.  I spoke with a good friend who is a vet in the city I grew up in.  She told me that he needed to get the surgery now before the stones tried to pass through the urethra and cause pain.  Then the surgery would be an emergency.  You don't want that.  So he had surgery on Nov. 20th, 2009, while we were out of town for a wedding. I was so nervous because we left him, but I thought he would actually be in the hospital longer than normal then and under their care rather than sent home. I thought that would be good.  He wouldn't know if I was out of town or just waiting at home for him.  They removed 28 stones from his bladder, which they told me would help him to be able to go potty much better and easier.

He ended up having a reaction to the staples, then 2 months later a suture reaction.  He went on antibiotics multiple times after surgery. He has had no more stones, though. Then he started having more accidents again this past month in Feb.  We took him for another urine test.  There were no stones, but sugar in his urine.  They did some blood tests, and his blood sugar level came back to be 425 (normal is 80-150).  He was diagnosed with diabetes and put on insulin shots twice a day, went blind in two weeks, could hardly walk, licked open his incision from his surgery 4 MONTHS AGO!, and was retested for Cushing's disease, which also came back as positive. I have been trying to decide what to do. He is not in any pain, and he still plays with his ball and his favoritie newspaper.  You have to carry him almost everywhere. It has been so much work for me, though, having all of my own chronic illnesses.  I really needed to make a decision...

For my own self, I began to have more fatigue, more pain.  I could hardly get out of bed to take him out in the early hours of the morning.  I could hardly carry him anywhere anymore.  I was having trouble cleaning up his accidents.  It was getting so hard, and I needed to find a better way to cope...

I needed to get more sleep.  I don't sleep at night. I could say that I don't sleep well at night, but let's face it, I don't sleep at all at night. I am in my most pain. I do my most thinking. I do my most worrying. I can never get comfortable.  The night is THE WORST. So, why not take advantage of my better times and my worst times, and use them for what they are good for.  So, since I can think best at night, I can read and write and do anything that fits into the category of reading or writing, such as blogging or emailing or surfing the web.  Then during the day, I can do some of the various household chores, and take a huge nap.  I don't work anyway, so who's gonna tell me I can't do that?   This is a great way for me to cope, use my strengths at my best times, when I'm least fatigued and have the least pain.  Sleep when I'm able, and when I can't, to hell with it. I might as well do something that I feel like doing rather than focusing on the pain at that time.  Besides, if I lie in bed at night trying to fall asleep and can't, tossing and turning, that is all I think about is how much pain I'm feeling at that moment.  And ya know taking a huge nap in the middle of the day is great because then I'm a whole lot less fatigued!

Prayer and healing go hand and hand with me and are also great coping mechanisms.  Rather I'm on the receiving end or the giving end, I always get something out of it.  Whether you use Reiki, Theta, or another form of healing.  Energy transferred from one person to another is healing!  I have been on both sides. I have been taught how to be the energy healer, and I have received energy healing.  When you are the healer, it is dependent upon the receiver on how well it will work.  So no matter if you are the giver or the receiver, it is always up to the receiver.  So every time I give,  and the receiver openly accepts the energy, I also receive a balance of energy in return.  And when I am the receiver, I graciously accept the energy.  The same goes with prayer.  When we pray, we are always thanking or asking God for something.  So we are giving thanks for something, or we are asking to receive something.  So in prayer we are giving and receiving as well. I believe that as an energy worker, I am a conduit for God's energy or his love, and He/She is sending his healing energy through me to help others who are in pain.  It is a wonderful thing!  Prayer is the same way.  We pray together or alone, bringing the power of God to us to help us here. So Prayer and energy healing are wonderful coping mechanisms.  I use them both on my dogs.  Cookie is living proof that it works. Both of his torn ACL's healed without surgery, and I was told by 5 different vets that surgery was the only way. He has no problems now.  Max's Cushing's disease originally went into remission with prayer and healing energy.  Also, now, as of 24 hours ago, Max is walking on his own, has had no more accidents, is seeing better, his sugar levels have decreased, and he is running around feeling better!  Wonderful coping mechanism!

For days that I cannot get out of my PJ's, I love to read, with a good cup of tea and honey. I prefer chamomile or Earl Grey or even a nice red tea.

I enjoy swimming at the pool at the gym. I feel like I leave my body. It is almost an alternate universe to swim.  You can visit some other posts about how I feel about swimming, but it is a wonderful way to help pain, stiffness, and fatigue. I get a jolt of energy.

I do love a nice warm bath, in the dark with just candles, especially vanilla scented candles. I don't care what season it is; vanilla is always a scent that makes me feel good!

I like to cook to cope!  I just have to be careful. One big problem I have is overdoing things. I have a history of not knowing when to stop. So if your like me, only cook something that will help you to cope and relax you, and when it starts to get painful, or you begin to feel fatigued, STOP!

I love when the sun is shining, and it's warm enough to take a walk with my dogs.  That is so relaxing to me.  I can sit on the swing in the courtyard when I get all tuckered out after the refreshing walk too!

Finally, I love to set an evening routine. I love to wash the dishes in the sink.  The warm water and the movement of my hands with the sponge and the soap bubbles feels good on my hands and wrists. I load the dishwasher, and then I wipe down the countertops, and I feel so calm and relaxed.  It's too bad that as soon as I lie down in bed, every part of my body screams in pain.  Oh well, I guess I can't do something to help me cope with everything! I think I just wasn't meant to sleep at night like everyone else!