Homecoming

Today I was once again released from the rehab facility. I am so relieved to be free from all of the confines and limitations and difficult conditions. I celebrate my freedom and my overcoming and my accomplishments. I still have a ways to go, but I have gone so much further than I imagined possible. I use adapted tools for now (special dishes and silverware and pens) but will get back to using normal items. I still cannot do buttons or zippers or snaps or tie things but that will come with time. Thank God for pull on pants and super cute Sketchers tie-less shoes. I am able to do so much more than I could at the end of January and it is a blessing to be home. It feels weird to not be confined to such a small space, to be able to get a drink when I am thirsty, to have a choice over what I eat, to not share a bathroom with four strangers, to not have to wait until it is convenient for someone to give me my medicine. It would be better if my mother were not in the hospital right now recovering from a stroke and a serious infection. I am still lonely and still missing someone to talk to and be with.
Yet for so many at that place there will be no homecoming, no new freedoms, no return to family, no return to a "normal" life. That existence is all that they will know from now on and that breaks my heart. In so many ways it is so wrong. It is so neglectful, so undignified, so restrictive, so demeaning, so limited. People become diagnoses become problems. Many workers are there because they care and want to be there, but many are there because it is a job and it pays and they were hired. They do not have any investment in the job, any compassion, any dedication. It is a paycheck. The system is broken and after 3 months living it I can say how it is broken but not clearly how it needs to be fixed. There are so many things to fix and from so many directions - policy, hiring, staff behavior, staff ratio, facilities, etc.
Most of all tonight I am giving thanks for my return home and prayers for those that I left behind.

Family Means No One Gets Left Behind

I have joined up with the work of Reece's Rainbow to support children with special needs awaiting adoption in countries where being born with a disability is a huge disadvantage from the beginning. I want to introduce the three special children that I will be praying for and advocating for. Their photos are on the right side of the page and by clicking on their photos you can go to their bios and donation pages on the Reece's Rainbow site.

Shannon is six years old and lives in an orphanage in China. She has Down Syndrome, two mild un-repaired heart defects, and is a hepatitis B carrier. Her older information states that Shannon is an outgoing girl who loves to talk. She may only be able to say simple words but she can be the life of the party. She has Down Syndrome and has been diagnosed with two mild heart defects (an ASD and a VSD). She is also a Hep B carrier. Shannon's caregivers say that she just loves life like the rest of the children in the orphanage. She loves to eat play and watch cartoons. Shannon is always playing and smiling.

UPDATE

Rule number one: Never leave scissors out where Shannon can get to them. She currently has little to no bangs due to an attempt to create her own hairstyle. However, even a bad haircut cannot take away from Shannon;s sweet spirit and lovable personality. She is currently 6 years old and waiting very patiently for her mama and papa. Shannon came to the orphanage at about 7 months of age already able to sit and crawl. She has good motor skills but needs help with her speech. Her receptive speech is good and she can follow directions. Shannon can use three word sentences. Shannon is a sweet and huggable girl who is very curious. She loves to play with her friends and thrives in a noisy environment. Shannon is ready to be part of a loving family willing to help her reach her full potential. For interested families, video is available.

Yulia is a four year old girl with hydrocephalus and a club foot living in an orphanage in China. She was born with hydrocephalus and abandoned at the local train station at the age of 5 months. At 9 months old she had surgery to treat her hydrocephalus and has a small scar on her scalp. She also had surgery for an intestinal blockage and has a scar on her stomach. She has good bowel and bladder control. Yulia had a left foot that is clubbed but is able to walk with someone holding her hand. She can use chopsticks, draw lines and circles, and speaks short sentences. She is reported to have normal intellectual development. She is a talkative and active little girl who gets along well with other children and likes to play outside. She desperately needs funds in her adoption fund to help a family cover the costs of her adoption.

Olivia is currently in the process of being adopted by the Graves family in Maryland. They were drawn to the Reece's Rainbow site by another child who was adopted by another family and then through prayer felt led to adopt Olivia. They are currently in the home study process of the adoption procedure. They have three biological children and are calling their adoption journey From Odd to Even. They desperately need to raise funds to cover the costs of adopting Olivia and have stepped out in faith knowing she needs a family and that they have room in their family just for her.

Just Breathe

I will never again take for granted the gift that is breathing. For a while I have been having issues with difficulty breathing due to the mitochondrial disease but nothing like this. Whatever infection hit me hit me hard and set up a chain reaction of lupus inflammation and mitochondrial weakness in my lungs. I am getting by on breathing treatments every 4 hours around the clock (yes you can fall asleep giving yourself a breathing treatment sitting on the side of the bed) and the maximum dosage of cough syrup every 4 hours around the clock plus now steroids. I have had pneumonia, I have had walking pneumonia, I have had bronchitis and never have I had to work this hard to breathe. I am thankful that in the end this will taper down to a new normal for me. That it will ease off once the inflammation settles and the muscles come back on board as much as they are willing. I will probably do breathing treatments forever now, but I am blessed. I can breathe without oxygen (I cut that border line close a few times but I made it), I can receive the treatment I need, I am improving ever so slowly and I know that after this breath there will be another one. I am blessed. For now I am blessed to just breathe.

When the Caregiver Gets Sick

Yes, I am medically disabled. Yes, I deal with a lot of medical issues and use a wheelchair and am unable to work. But in many fundamental ways I am the caregiver for my mother. She has demylination of her brain and has a very limited functional memory. If she leaves the room looking for something odds are she will not remember by the time she gets to the next room what she is looking for. She loses things all the time. We have three sets of house keys so far. She mixes up medications. She does not remember to take medications. She does not remember to eat, or if she has eaten, or what she has eaten. She does not always know if it is daytime or night time. I am her memory for her. I take care of the bills and the paperwork, the items that place a demand on her brain that she cannot handle. I take care of the daily schedule and make sure meals are prepared and eaten on time. I set up her pills into daily pill containers and remind her at the right time to take her pills. I help her to remember and be calm and not feel afraid. Her body may be stronger in some ways, but my mind is stronger and so we work together,.
So what happens when the caregiver gets sick and there is no family to call in to pick up the slack? No family that cares enough to be involved and see the full picture and be willing to commit. No friends that can offer the help needed. Things start to fall through the cracks. When the caregiver is sick and out of the house, a telephone call can only do so much. Meals on Wheels provides one hot reliable meal per day. The others are a toss up. Medication administration that is so well planned when the caregiver is home falls apart. We finally had to set up for a home health care nurse to set up my mother's pills in the pill boxes for her each week while I am gone. But who is there to remind her to take them? I try to call each time a dose is due and remind her but I am not consistently available. Paperwork stacks up as it overwhelms her and is beyond her capabilities, for me to deal with when  I get home. Bank accounts get messed up without supervision. Her health, her quality of life suffers when the caregiver gets sick. And there is no back up plan for this in our society. There is no one to call to step in when the caregiver has to temporarily step out. I could not have planned ahead for this or found a respite placement for her, as it was an emergency situation. And yet the caregiver is responsible.

Kung Fu Fighting

I have been rocking it in therapy lately and have a lot of new accomplishments to share. I figured I would do this in a list form rather than writing out a sentence for each one.
* I can walk sideways while holding on to a bar
* I can walk backwards while holding on to a bar
* I can walk up and down a set of five stairs of different heights
* I can walk stepping over cones (with right leg on one lap, left leg on the other)
* I can then pick up the cones from the ground
* I can eat (very messily) with my right hand with adapted utensils
* I can write (messily) with my right hand with a fat pen
* I can dress myself and pull up my own pants (Hey that is harder than it seems!)
* I am now allowed to transfer in and out of bed and to go to the bathroom independently
* I can manipulate objects like dice and clothes pins
* I can catch a ball

Now for the areas where I still need work.
* I need to work on feeding myself and writing
* I need to work on balance
* I need to strengthen my right leg when bending as it reaches a point and then gives out
* I need to build endurance and strength in all areas
* I need to work on general household tasks
* I need to walk longer distances with a normal gait pattern without cuing
* I need to work on my toes not turning inward when I walk

The BEST news is that I get to go home next Friday (February 26)!!!! I will receive therapy at home and continue to improve but I get to bust out of here in 8 days (not that I am counting)!!

You Put Your Right Side In

I feel like I am playing a perverse game of the Hokey Pokey. First I had to put my left leg in, and my left arm in. Now I am putting my right arm in and my right leg in. Hopefully sometime soon I will turn myself about. Is that what it's all about?
Today in therapy I was able to move my right foot all by myself. This is the first time since the hemiplegic migraine that I was able to  move it forward without assistance and clear the floor (ever so slightly but I cleared the floor). Yesterday the therapist had my foot on top of hers to take steps and pushed my foot along with hers. Today I was able to lift it just off of the ground enough to move it forward. I am also working on getting my foot to move, both opposite of my left foot and together with my left foot. Any movement is good. I purchased a very cheap Kindle Fire online and am using it as motivation to use my right hand even just to slide across the screen with a finger or touch with an isolated finger, things I need to work on right now. As I progress I can download games that require more finger and hand usage.
My perspective for today is that while I may be physically falling apart, I am blessed to have my mental abilities. There is an elderly gentleman parked in his wheelchair in the hallway outside my door where he can be watched for his own safety. He made it from his bed to outside in under a minute and it is freezing cold out today. Thankfully there are alarms on all of the doors. He is considered combative and right now is sitting in his wheelchair having removed his gown and trying to disassemble his oxygen machine. He will be having someone sitting one on one with him for the night to help keep him safe. This is very uncommon in a place like this for them to allocate staff for a one on one situation and probably will not happen again. That is why he is out in the hall, so he can be watched by current staff. He desperately needs individual attention, a dedicated aide, and a safer place to be where he cannot easily get from his room outside. Yet this is the best that his family can do for him right now and that makes my heart hurt for him. Carrying the gene for early onset Alzheimers disease it terrifies me to see how those with dementia are warehoused and treated in our country. We need better options, we need better services, we need better places and people and ways to treat those in need. We can do better and we must do better.

The Circle of Life

So much has happened since I last wrote here that I will try to condense information as much as possible. On December 27 I had a second hemiplegic migraine that impacted my left side. It mimicked a stroke again, and it took two and a half hours for the rehab facility/nursing home to contact emergency personnel. I thank the Lord that I was not having a stroke. This set me back significantly and I ended up being gone from December 4 (in the hospital until December 7 when transferred to rehab facility) until January 22 when I was discharged. That was 42 days in rehab. I was doing so much better. I had started to receive some therapy at home but was doing well. It was so nice to be home. Mom had left the Christmas decorations up for me because I missed Christmas. We went out to dinner to celebrate me being home.
That brings us to now. On Saturday I had another hemiplegic migraine, this time impacting my right side. I was home EIGHT days. Eight days. I am having a hard time coping with this happening a third time in less than two months and throwing my life out of sorts all over again. It is physically exhausting, and it is mentally exhausting, and it is emotionally exhausting. I feel so alone at times. I will once again be going to rehab. I was supposed to go to a rehab facility much closer to home than last time, but they do not have any beds. So as of right now I am going back to where I was last time, with the promise that I will be transferred as soon as a bed is available. This time is harder because I know what to expect, and because my right side is my dominant side, and because I was already gone so long before with just a short break at home. I am trying to be thankful that I had time at home, something many of the residents do not have as they live there day in and day out. I am trying to be thankful that it was not a full stroke causing brain damage. I am trying to be thankful that I have access to medical care that I need. I am trying.