Living with Ankylosing Spondylitis: My Journey with Invisible Pain

 

Today, I want to talk about something deeply personal: ankylosing spondylitis (AS). It’s a type of arthritis that primarily affects the spine. In my case, the vertebrae in my spine are fusing together—that is what the “ankylosing” means. The result? Pain. Stiffness. And a very different way of moving through life.

AS doesn’t look the same for everyone. Some people experience little to no pain. For me, it comes in waves. I was diagnosed around 2008, after what we initially thought was just a pulled muscle. But the pain got worse—so bad at times that I would literally pass out from it.

I haven't had a severe flare since 2015, when a five-hour surgery forced me to lay flat on my back. That position triggered a brutal recurrence. Since then, I can't sleep on my back without days of lumbar spine pain.

My History with Treatment

Back in the day, opioid prescriptions were handed out like candy. I was told to take 4–5 opioid pills a day, along with very high doses of Gabapentin. I didn’t follow that plan exactly. I took the opioids at lower doses, three times a day at most, and they didn’t make me feel any kind of way—I was careful to use them only when I truly needed them. The Gabapentin, on the other hand, was prescribed at very high levels, but I found that much lower doses were enough to calm the neuropathies. Even so, it started affecting my memory, and some of those issues have lingered. I’m grateful I listened to my body and adjusted things, especially now that we know how dangerous and addictive some of those medications can be.

Now, things are more complicated. I take Xarelto for blood clot prevention, which means I can’t take NSAIDs. Tylenol is technically "safe," but for me, it might as well be a sugar pill—it does nothing.

Recent Flare and Modifications

For the past two weeks, I’ve been in a pretty severe flare. I don’t know what triggered it, but the pain hit hard. I had to adapt my surroundings. My bed is on a platform, which makes it easier to get in and out of—but it still requires sitting up and bending, which has been tough.

Blessedly, I found a lift chair recliner on Facebook Marketplace for just $25. My youngest son picked it up, and a friend helped fix the minor issue it had. It’s been a game changer. I can now recline and stand without straining my back.

I visited the doctor, got a steroid injection, and it helped quite a bit. I'm going for lower spine x-rays soon to assess how far the disease has progressed.

Other Symptoms: Vertigo and Neuropathy

On top of the spinal issues, I’ve been dealing with vertigo. When it hits, the room doesn’t spin—I just get deeply nauseous. Sometimes it feels like I’m standing sideways when I’m upright. I’ve avoided taking meds for it because they make me too sleepy. Instead, I use peppermint essential oil, which helps. I have little vials placed around my house—by my chair, bed, desk, kitchen, and bathroom.

Then there are the neuropathies. The extra bone growth from AS can trap or pinch nerves. Sometimes, it feels like my face is on fire. Other times it’s a burning hand, stabbing arm, or a foot that feels electrocuted. It’s unpredictable and exhausting.

I also have degenerative disc disease. The last time I was checked, I had two vertebrae with no disc left—just bone grinding on bone.

Living with Invisible Illness

Here’s the most important thing I want you to understand: This is an invisible illness. People look at me and maybe think I have bad posture. But it’s not just posture—it’s fused bones. I often stand or move in ways that minimize pain, even if they don’t look “normal.”

It’s not that I don’t want to do things. It’s that I can’t. Every day is a choice:

• Can I stand in the kitchen long enough to cook?
• Should I batch meals for the week or just try to get through today?
• Can I go to the store—or will I have to pay for delivery (which isn’t easy where I live)?

Even something like carrying groceries requires careful planning. Because of my aortic aneurysms and AS, I can’t lift over 10 pounds. I either use reusable bags with just a few items or get 10 plastic bags for 10 items.

Dog food? That’s another project. I can’t lift a 50-lb bag. So, I use a scoop and a wagon to move it bit by bit into bins and feeders. Friends and family help when they can—and I’m so grateful for them.

On Gratitude and Grace

Despite everything, I’m thankful. I’m thankful that I’m not in pain every single day. I’m thankful that I have support when I need it. And I’m thankful for the good days when the pain is manageable.

Generally, I live at a pain level of about 3-4 on a scale of 10. For the past couple of weeks, it’s been closer to 9. Thankfully, things are easing up after the injection—but it has affected my ability to work, especially my gig work and hustles. I’ve had to pause things like mystery shopping and inspection jobs that require driving or walking. Sitting has been unbearable and watching a computer screen

Please, Don’t Judge What You Can’t See

If you take nothing else from this, take this: Just because someone looks fine doesn’t mean they are. Your friend who used to be the life of the party? They still want to go. They just can’t.

Be kind. Be patient. Offer help when you can. And take care of your body. Stretch. Eat well. Go for walks. Hug your loved ones.

Because one day, you may find yourself facing invisible pain too.

---

Want to Learn More?

Here are some resources I recommend:

• 💙 The Spoon Theory by Christine Miserandino – A great way to understand chronic illness and energy management
• 📘 Spondylitis Association of America – What is Ankylosing Spondylitis?

Should I Blog About Chronic Health Conditions? I’d Love Your Input.

 

Lately, I’ve been thinking about adding a new topic to this blog: chronic health conditions—specifically, the ones I live with.

No, I didn’t say suffer from. That’s important to me. I live with these conditions, I manage them, and while they affect my life, they don’t define it.

Here’s what I’m thinking, and I’d really appreciate your feedback:
Would you prefer that I write about each condition separately—maybe even create sub-blogs or categories for each? Or would you rather I focus more on how they all affect me together, as a whole, in daily life?

Because the truth is, that’s how I experience them. Not in neat little boxes. They overlap. One flares, and it triggers another. Some days are hard. But honestly? Most days, I get up, go about my life, and don’t even think about it until it’s time to take medication or supplements. Even then, it’s more like, “Oh yeah—I take this because it helps with that.”

So I’m considering a blend:

• Individual posts or sub-pages for each condition (for those looking for specific info or shared experience),

• And then main blog posts that talk about the big picture—what it’s like juggling them all, how I manage, what’s helped, what hasn’t.

Would that be helpful to you? Would you want to read it?

Please scroll down and drop a comment to let me know your thoughts.
I want this space to be supportive, informative, and real—and your input truly matters.

Thanks for being here. 💜

Seasonal Allergies

This post contains affiliate links.


As many of you do, I have seasonal allergies. Spring and Fall are actually my favorite seasons. The weather is just right for anything outdoors: camping, fishing, yard work, gardening, even good choring weather.

Unless--you have seasonal allergies! You know, stuffy nose, that creates a breeding ground for bacteria so you end up with a sinus infection. These things lead to just being so tired!

I have discovered some other things, not so limiting, that do help. 

1.  Cover your hair--Our fore parents covered their hair to keep it clean and to not have to wash it so often. Not a bad idea. But seriously, pollen gets in your hair and sticks to it and all the products in it. Then when you are sleeping, all that wallowing around in the arms of Morpheus, loosens up that pollen and you breathe it in. 

2.   Rinse your sinuses--Invest in a good sinus rinse device that you are comfortable with. I use the Neil-Med pictured below. I use the saline packets along with Alkolol. 

I rinse my sinuses at least twice daily during Spring and Fall. 

3.   Invest in a good diffuser--I use The Breeze, which can be purchased here. 

4.   Use the above noted diffuser. Mine runs almost 24/7! My personal base essential oil is eucalyptus. Other essential oils I add together or alone are peppermint, rosemary, spearmint, and/or lemon. 

Elderberry Syrup

• Please note: This post contains affiliate links.

I recently heard about all the benefits of Elderberry Syrup. My thoughts were, "Yeah. Natural IS the way to go, but only Slippery Elm heals what ails you. Its the best cure all out there." Well, my thinking has changed.

I started here and here.

Then my eldest daughter had a virus that is hard to get shed of. She talked with her Health Care Provider about anti-viral herbs. After careful research she was sent to this website. Low and behold, Elderberry is the very first one listed.

I have been a follower of Dr. Christopher and his Herbal Legacy for many years now. So off to that website I went. Elder and Elderberries are AMAZING.

You may think this is a short an not very informative blog. I can hear you now, 'If this is her come back blog post--I'm gone."

Let me explain--I am all about education and education is hard won. Research you do yourself is more readily retained. Click each of the links I have provided and do some more.

You can purchase a kit to make your own Elderberry Syrup by clicking the here:

3 of 4 quarts of Elderberry Syrup made from Beeyoutiful's kit
 and 1 quart of Elderberry tincture making from the left
over Elderberry Pulp and 100 proof Vodka.

Hashtags- #elderberry  #naturalmedicine  #herbs  #holistic  #crunchy  #healing  #health

Catnip--Not Just For Cats!

Catnip

This is first of at least seven harvests of catnip that will be coming in from behind my boyfriend's Mom's chicken house. Isn't it beautiful?

Catnip is also known as catmint, catnep, catrup, catswort, & field balm. In my experience, there may be ten more things it is called by different people in different areas of the world.

When my oldest child (born in 1986) was a couple weeks old, Mama took me to meet an older lady, really, I think Mama was going to buy a roll (not a bolt) of cloth from her son. At any rate this lady was looking at Virgillia and said, "That youngin's a gonna have the colic. You got some catnip? Can tell by looking in her eyes."

I did not have any catnip growing so she had her great grand daughter go get me some, a lot. It was a paper grocery sack plum full! She told me, 'Now that ain't a gonna be enough, but it'll get you started on saving your sanity. Make a gallon at the time and I reckon that you'll a be going through a that every day. It'll be starting in about two weeks."

Well, she was right. Colic set in. I made catnip tea by the gallon every day for the baby and another half gallon for my nerves! The doctor gave me Mylicon drops for her, the older nurse winked and said, "Don't stop making that tea." 

It helped. It kept me calm. It calmed her for varying time periods. Someone at church recommended onion tea when the catnip ran out and I couldn't find anymore. It helped too.

Years later another friend, Hilda, told me to give my son, Franklin some catnip. He was five weeks old and had not broken out in that baby acne yet. She said the catnip would break him out, (all my others had had it at 4 weeks) and that if they did not get it by six weeks, they would die-so the old women said. Well, i did not give him any, he never broke out in baby acne and he died just a few minutes shy of being 80 days old. (I don't believe that is why. He was sent here for a mission and he did accomplish that. That's another story for another post.)

Back to catnip, it is currently included in many commercials teas that are sold for "calming" or "sleeping".  It can bought in bulk from many sources. As anyone that has ever planted just a sprig or two will know, it is very prolific and virile!

It has a mild minty flavor. It does drive some cats crazy. Others will just look at it, sniff and walk off.

Scientific Name-Nepeta cataria

The medicinal part is the herb.

Through the centuries it has been used for many reasons. New research suggests it is useful for other things also.

Some of the uses through the ages:

1. Anodyne-soothes or relieves pain
2. Antispasmodic-relieves or checks spasms or cramps
3. Aromatic-agreeable odor and stimulating qualities
4. Carmanitive-expels gas from the intestine
5. Diaphoretic-promotes perspiration
6. Anti-diarrheal
7. To help Chronic Bronchitis   
8. Planting around the garden to repel aphids and squash bugs.

New Discoveries:

1. Attractant-irididial has been shown to attract lacewings which eat aphids and mites.
2. Nepetalactone when extracted from catnip is said to be as good as DEET as a mosquito, roach & termite repellent.

Anytime you give an herbal tea as medicine, do not add sweetener of any kind. In the case of catnip, it is sweet on its own. If you have a patient that flat refuses to take it without sweetener, use a small amount of local, organic, un-processed honey that the the bees have not had access to GMO plants. Do not boil catnip. Bring water to a boil. Cool slightly-about 3 minutes. Pour over catnip in a non-metal & non-plastic container. Let steep.

Catnip tea can be given for upset stomach, colic, spasms, flatulency and excess acid in the stomach. 

Catnip can be taken as a tea, tincture, in capsules, juiced, as a poultice or smoked.

Please refer to my page on how to prepare herbs for use.

Resources:

The Herb Book by John Lust

Wikipedia

Please click here to read Medical Disclaimer for this blog.

Talking to Surgeon

I went yesterday and spoke to the surgeon. She is a very sweet lady, I met her before, she did my biopsy. She explained to me that having adenomyosis, which is what they believe I have, is the better choice. I also need to have a rectocele repair. (I have had this for 22 years after a doctor felt the need to use high forceps on me & for reasons beyond any other OB/GYN, refused to repair it.)

The other option for adenomyosis is to have an ablation. This would be done out-patient and I would have to return for the rectocele repair. Also, though I prefer to keep my cervix, doing so, could cause the repair to by stress.

This sweet young surgeon does not charge for her work during surgery for Faith Family Clinic. (Please consider donating to this wonderful facility providing medical care for the working yet uninsured.).

She performs these surgeries at The Women's Hospital at Centennial Medical Center. It will be a laproscopic hysterectomy, leaving the ovaries, unless they have problems. Then the rectocele will be repaired.

She says I should up and about in 3 weeks, with restrictions such as no lifting, no floor care, etc. She will tell me fully after she exams how I have healed to that point.

Her surgery scheduler will call me soon and we will pick a date after the first of the year. Then I will go to the hospital and find out who my anesthesiologist is, how much they are going to charge me ($0-$?????) and what the hospital bill is going to be.

I believe I will schedule early in the year, say January, so I can be functional by time to put the garden in.

Facing Surgery

At 45 I have only had two surgeries and been under general anesthesia four times. The prospect of the "little death" is actually more scary than the surgery itself.

The first time was when my third child, David Israel, was born. He was posterior. My midwife had transported me to the hospital due to the fact I was having so much pain between contractions and my babies were so large. She also could not determine what part of the baby was presenting. Fear of a transverse presentation  (I did experience this with a later delivery) and a possibly rupturing uterus, we called for an ambulance.

This was not a good birthing experience for me. The doctor refused to allow me to have any support person what so ever in the labor room with me after giving me pain meds-actually giving me "Twilight Sleep". Had I known this before, I would have refused. Had it known it was "Twilight Sleep", I would have refused. In the delivery room, I was given ether, tied down by my wrists and ankles, "delivered of the child by use of 'high' forceps" and woke up later in a 3rd bed in a recovery room (3rd room), asking for my baby. I was told it was a male and nothing else could be told me to until my mother-in-law arrived. They refused to let my husband any where near me, with good reason for their safety. The child was born "coal tar black", not breathing, and suffered a seizure a few days later that caused enlargement of the ventricles in his brain which also results in shrinkage of the brain itself. This resulted in a diagnosis of Severe Spastic Cerebral Palsy.

You can only imagine how this affected my view of hospital births, (my previous 2 had been born at home), and anesthesia during birth. Please note, this happened in 1990.

The next time I went under general anesthesia was in 1994 when my fifth child was born. Sabrina Eden had been breech. My doctor attempted an External Cephalic Version. This child got transverse with her head right under my heart and very literally started shaking her head, "NO!" We could see it on the ultra-sound and my belly! She is still the child will dig her heels in!

Needless to say, her refusal to even go back to a breech position, resulted in a C-Section two weeks later when labor started spontaneously, four weeks early. (She weighed in at 9lbs. 3 oz. & was 21 inches long). This was a different doctor. Different hospital. Different county. Not the home-birth I had so wanted again, but a much better hospital experience than before.

My next general anesthesia experience was four years later in 1998, had my gall bladder removed after they saw "gravel" in it when doing an ultra sound of my kidneys. I came out of surgery with elevated blood pressure. I remember waking up to the recovery nurse telling me to open my mouth, she wanted me to take a sub-lingual dose of Corgard.  I had warned the doctors and nurses, before surgery, that this medication had been used on me before and it always bottomed out my blood pressure., a potentially life-threatening condition, especially as it dropped to something over 63. (Note-I was at the hospital I gave birth to David Israel in.)

The last time was in 2010. I had a LEEP procedure performed. I woke up once, no drifting in and out, no recovery of senses but no eyes open, just suddenly my eyes were open. The nurse came in a few minutes later, took my vitals, told me to go get something to eat, went over after-care instructions and sent me home. I puked my guts out as I stepped out of the car at the house.

As you see, I have mixed experiences  with "going under". I have some serious reservations about loosing body parts. (Have always regretted letting the gall bladder be removed.) But I have lots of things to consider here.

In seven short days I go talk to the GYN Surgeon to see if she will take my case or refer me to someone else. As a self-pay patient, making less than $20,000 a year, I am also considered a "charity" case. If she will take my case, I will need to already know what I want to do so that I can make pre-payment arrangements with her and the hospital.

The GYN agreed to administer an injection of Progesterone to buy me some symptom relief for 3 months. I asked for this. Those that have known me any length of time, will know that would not be a normal choice for me. However, I am sick of vaginal bleeding every day, menstrual cycles that have been diagnosed as "hemorrhaging", all degrees of uterine cramping, severe anemia and all of its symptoms.

I have been one of the lucky ones, to be very in touch with my body since a young age-in my teens. I always know when I ovulate. I know when something is wrong or right. I was very blessed to actually know the very moment of conception of each of my ten children and therefore to have truly known them and communicated with them from that very moment. I have always been at peace with my body and being a woman and having a uterus-bleeding on a regular basis. It was a a blessing of God. But in recent years, the past 3 or so, the spells of actually hating my body have become increasingly longer & more frequent.

I have 6 days to consider all the options and the pros & cons of each. My inner student is doing lots of research. 

Help Heal Phoenix

UPDATES ARE ADDED AT THE BOTTOM.

Phoenix and his twin brother Malachi were born prematurely by emergency c-section. Their Mother discovered her pregnancy when she went to the doctor for missed periods and he told her that as she had undergone a tubal ligation and was using back-up birth control she wasn't pregnant. After an exam the doctor said she had a "missed miscarriage" and wanted to do a D&C. 

Misty refused. She preferred to wait to see if her body would do this on its own. Weeks later she was told was pregnant-one baby. She planned a weekend retreat to tell the Daddy. Before that weekend came, he was killed in a car wreck .Now she is told she is expecting twins. She chooses names. Though her heart is breaking, she has other children and these two wonderful Gifts from God on the way. She must go on. Now the news is that the babies are sharing not only an amniotic sack (bag of waters) they are sharing the same placenta.(Learn more about MoMO Twins here.) This makes it nearly impossible for both babies to live to birth. As a matter of fact, she was told no less than three times that Phoenix was dead. 

She is put on bed rest. During this time my husband was nearing the end of his walk on this earth. Misty had offciated at our Wedding. He asked for her. She came. Sat with us as much as she could. When he passed, she was there to bless the gound and perform his last Ceremony.

A few weeks before the birth Misty was told Phoenix had a "small hole" in his heart. Nothing bad-they would give him some medication for 24 hours after he was born and all would be well. I got there right after the Cardiologist left--Phoenix indeed had a small hole in his heart-along with several other heart defects. There was a name for it-Tetrology of Fallot. He would need to be kept calm at all times. No crying. Several surgeires throughout his life. For the first few months he would have to be fed very small amounts around the clock as to not stress his heart. He also had to gain weight slowly so his damaged heart could keep up.

Fast forward five months. He goes in for surgery. They find another hole in his heart. He has been splayed open, fixed temporarily until he grows so much more surgery is needed. He has complications but is sent home. Now he must not be exposed to many people and definitely no germs for six weeks. his Mom and God-Mother take up residence in the master bedroom of the family's apartment to keep as isolated as possible.

Misty has not been able to work in months. She has a family to support. Times are tough.

Please, consider making a donation to help this family make it through these times.

There are three ways to donate--if you are in the Nashville, Tennessee or Dickson, Tenneessee area just go to a Cornerstone Credit Union Branch. Tell them you need to make a donation to the Phoenix Garrett Account. Or you may send a donation through PayPal to twinphoenixboy@gmail.com. any amount, no matter how small is needed. Small actions will add up to something big. Or you can go to Indiegogo by clicking here or on the box to the upper right.

UPDATES

Sept. 3 2012 Phoenix is still having crying spells that last up to an hour. The doctors warned this could happen. It happens around the clock. His heart rhythms still are not correct so they are now saying another surgery soon to put in a pacemaker. 

This will entail another blood drive. His blood is B negative. The doctors do not want to tax his already taxed body by giving him O negative. If you are B Negative and can get to Nashville be on standby and contact Misty below at her Facebook page so she can set the appointments up when the time comes. 

No matter your blood type, but especially if your Rh factor is negative, please donate blood on a regular basis.


Sept. 5, 2012 Phoenix saw his Pediatric Cardiologist yesterday. His heart is still out of rhythm. She wants to do a 48 hour test on him but the stickers have to go where his scar is. She wants to wait until that his healed so as to not risk irritation that could lead to infection. It does look as though he will be needing a pacemaker. 

He has also lost his appetite so the doctor has decreased his lasix dosage (this is to move the excess fluid from around his heart and lungs). He is already on 22 calories per ounce of intake and may need to go to 24 calories ounces per ounce.

Here is the link to the first story done by Fox17 Nashville.

Misty can be contacted through her Facebook page.

I can be contacted through my Facebook page.

Brother Goes Home After Hip Replacement

Don had his surgery last Monday, 12 October, 2009. The doctors got him opened up and they had to remove a lot of hardware that was put in place earlier-screws, plates, a rod, etc. Then completely replace the left hip. The bone had grew back after the accident, curling at the ends where the new growth was. This had to be trimmed. Extension plates had to be put in.

On Tuesday he was up walking some in the morning and he walked " a lot" Tuesday afternoon.

On Wednesday he was in extreme pain. He could not do any physical therapy. Of course the hospital staff just thought that maybe he was not wanting to do the therapy and took him down anyway. Once the tears started, they took him back to his room, but the nurses just treated him as though he was not really in that much pain. The pain was coming from his back in the area of his kidneys.

Eventually one of his home health physical therapists came by to see him and saw the pain and went and talked to someone. His pain medications were adjusted and his doctor called.

The doctor called in a Urologist and many blood tests were run. His creatinine levels were elevated. Don was told to make sure the test results were given to his primary care physician and urologist.

The Orthopedist asked for Don to be transferred to a Rehabilitation Hospital/Physical Rehab Center but the one in Greenwood, SC does not have a standing contract to accept Medicaid (Don is receiving SSI) and Medicare denied to pay for it.

He will however, continue to receive Home Health Services. They are even coming out today, Sunday, to check on him and get him set-up.

He can put as much weight on his leg as he can stand, he can walk with the aid of a walker.

This hospital stay has lead Don and the medical staff to realize he is allergic to regular tape and must use paper tape.

I could hear the pain in his voice over the phone yesterday. He told me his goal is to do everything the therapists tell him do and a little bit more.

The Pastor at our church (Hodges Church of God will always be my home church no matter where I am at) is stepping down after many, many years of Pastoring. His last Sunday is the 25th of October 2009--Don wants to be there for that.

He has set himself a lofty goal all things considered.

With many prayers and a lot of dedication and determination he will make it.

Again, many thanks to all my loyal readers for their thoughts and prayers.

Brother Has Hip Replacement

As many of you will remember, my brother, Don, was in a bad car wreck April of 2008 and pretty much crushed from the waist down.

He has spent many long hours of rehabilitation/physical therapy and had several surgeries.

Grady Hospital doctors in Atlanta, Georgia had him on the table for hours a week before sending him home to our elderly Mother in South Carolina.

He fought and finally got SSI and since then has been able to get the medical attention he has needed.

The doctor's went in Monday, 12 October 2009 to replace his left hip. It ended up being a good bit more extensive.

They had to remove all the hardware previously placed in there. Pins, rods, screws, etc. Bone that had not grown back properly.

Then they had to put more hardware in--the new hip joint that ended up being that plus bone extentions.

Don is in a lot of pain. He lost a lot of blood. His blood pressure keeps dropping.

It has not been a full 48 hours yet, but he's doing well.

Now we pray for a fast recovery, pain relief, and approval for his rehab/therapy.

Days of Caring--Alzheimer's

As some of you that know me and/or follow me on other places on the web, already know, my fiance's sister has Alzheimer's as does her husband and we are caring for them.

This is not an easy task as it is only us. Let me introduce each of us to you, the blog reader:

Me--I am 41 with a birthday coming up soon. You can actually read my profile to learn more about me. I do want to note some medical conditions here as they have a bearing on this particular blog entry-hypertension, spondylosis, and rheumatism.

Dave-He is 65½. He has had open heart by-pass surgery and four heart attacks afterwards. He is now showing signs of congestive heart failure. He has also had four arteriograms.

Robbie-Dave's 79½ year old sister. She was diagnosed with Alzheimer's about 2½ years ago. She also has a low thyroid, and is B vitamin defienct, and suffers with hypertension. She has a dominant personality.

Bob- Robbie's 83 year old husband who will be 84 in a few weeks. He also has Alzheimer's and was diagnosed at the same time she was. He lost a kidney about six years ago to cancer. He has also been diagnosed with renal failure, hypertension, brain aneurysm, and two femoral aneurysms. The left femoral aneurysm was repaired in July 2008 when he underwent an above the knee leg amputation due to PAD. Bob is a docile person.

Some of Bob and Robbie's medical conditions, if not all of them, worsened as her Alzheimer's progressed. See she had it for many years before anyone noticed. They all just assumed it was her eccentric personality getting worse with age. As has been discovered, she was not allowing Bob to take his medications nor was she taking hers, this only made each condition worse.

About two and a half years ago, several family members had tried to call and for several days not gotten an answer. A sister sent her husband and niece down to check on them.

Robbie was in the floor half naked and Bob was just ignoring that fact and the phone and door.

Dave was called and he came down. The niece had dressed Robbie and placed her in a wheelchair she still had from breaking her leg several years previous due to osteoporosis.

At this time Robbie had ataxia and just could not remember how to walk. She went to a nursing home for what was supposed to be a twenty day stay for rehab--to teach her how to walk again.
At eighteen days they called us and told us to come get her immediately or they would be placing her in a mental health facility as she had obtained a nail file and tried to stab a member of the staff.

A few of Robbie's escapades at the nursing home:

1. Going in other people's rooms and taking their clothes.
2. Going in other people's rooms and putting her clothes in their closets.
3. Locked herself in a gentleman's closet with a trash can. She was peeing in it.
4. Trying to run away.
5. Jerking the covers off of sleeping patients at night and yelling at them to get out of her house.

We have had to put double key deadbolts on all the outside doors. There are cam locks on all the cabinets in the house. We had to add a door to the utility room. The fridge and freezer have padlocks. All the clothes have been removed from her room and put behind lock and key. The bathroom has been emptied for her safety. The stove is not functional as she "cleaned" it to the point it will no longer work--she was taking the eyes out in the dark. (Yes, the electricity is off to the stove.)

There are no typical days. Robbie slide off into yesteryear a long time ago. She maybe in 1975, 1982 or 1946 and not on different days, sometimes all in the same hour.

Bob forgets he only has one leg now and will try to stand and walk.

They both have hallucinations and delusions and sometimes she has paranoia.

Sometimes Robbie is aggressive but not as much now with medications in her system for sometime at this point.

They both have sundowners at times.

Robbie also exhibits repetitious behaviors.

Please, learn the warning signs of Alzheimer's. Getting an early diagnosis can add productive years to your loved one's life.

Please, go here to sign a petition asking President elect Obama to make Alzheimer's a priority.

Handicapped Parking Spots

Sometimes, people, myself included, just do not think.

I want you to take a moment and close your eyes and picture a handicapped person. What do you see?

My car, sadly, sports a handicapped license plate. I park in the handicapped parking spot at work and other places. Several weeks ago a lady came back and told another employee that she wanted to lodge a complaint--an employee was parked in a handicapped parking spot.

It apparently never occurred to this woman that handicapped people have limitations and are productive, contributing citizens.

As the conversation ensued this woman expressed that surely I could not have any handicapping conditions as I was gainfully employed and did not use a wheelchair.

People, not all conditions that limit mobility are visible.

You can not see into my spinal column and see the bone spurs that are prying my vertebrae apart and at times cause nerves to be pinched thus causing excruciating pain that can and does bring me to my knees. There are times the pain is bad enough I faint.

You can not see the spinal stenosis that is causing my bony spinal column to close in around the nerves of my spinal column and that movement, such as walking, can cause the nerves to rub against those bones. Again, this is extremely painful.

You can not see the rheumatoid arthritis in my hips, knees and other joints that has been damaging these joints since I was nine (9) years old. You can not see the pain that causes me.

You can not see the rheumatism in my lungs that makes breathing difficult.

Then there was my Daddy. He had gout in the soles of his feet. It looked like someone had implanted golf balls in them. I could see the pain on his face as he would walk the shorter distances from the handicapped parking spots to the door.

I also saw the tears as people yelled at him for being lazy and taking a spot he did not deserve.

No one could see the enlarged heart beating in his chest overworked by the exercise of walking those few feet.

I continue to work because I refuse not to. My Daddy continued to go to the store whenever he had a good day.

Think before you judge someone.

Life Gets Busy!

I haven't said much about this before, but my boyfriend and I take care of his sister, Robbie and her husband, Bob. They both have Alzheimer's.

Bob had his left leg amputated above the knee on July 30th of this year. He went to a nursing home for twenty days. He came back home on this past Monday.

He is doing pretty well. He is, understandably, afraid to stand on his one leg. At six foot tall, that would be a long fall.

He has lost the ability to know when he must urinate and wears diapers now. That sensation may return. He knows when he needs to sit on the bedside commode to defecate, but does not know when he actually does.

Robbie, bless her heart, tries to care for him, but she just isn't able to. When he wants an extra blanket, she will take the he one has and put another one on him.

He has learned that he can raise his hips and pull his own pants up.

When the staples come out of the stump, September 4th, they will start shrinking it so that he can be fitted for an artificial leg.

Please, learn the signs and symptoms of Alzheimer's so that if a loved one of yours develops it, it can be caught early and treatment begun.