Facing Forward: "Broken"

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name:  I blog under "Broken"

Location:  I live in central Missouri, USA

Diagnoses: Hypertonic Pelvic Floor Dysfunction (I have no voluntary relaxation of muscles below the waste on my left side just under the ribs to just above my knee); Permanent Structural Damage to my Bladder (I can’t void without a catheter)

Age at Diagnosis: Hypertonic Pelvic Floor Dysfunction at 43; Permanent Structural Damage to my Bladder at 46

How are you currently treating your condition?
My Hypertonic Pelvic Floor Dysfunction is treated by internal vaginal physical therapy, biometric Estim physical therapy, trigger point injections into the Levator Ani, and pain medication. I spend a lot of time sitting on a heating pad because my butt always hurts or I take a really hot bath (my husband will boil water to add to the tub so it’s hot enough to release the tension.

The permanent structural damage to my bladder is from a neurological condition and not musculoskeletal and not associated with the pelvic floor dysfunction. I have urodynamic testing and cystoscopy. I have a 3 MRIs scheduled and the results of those tests will tell me what neurological disorder caused the structural damage and will allow the doctors to “see” the best place to insert an InterStem device which is basically a pacemaker for my bladder.

I was also diagnosed with arthritis at 13. As a child it affected my knees. As an adult it’s my hands. In the mornings I can’t even squeeze my toothpaste on my toothbrush or pour my own coffee. I’m good to go about an hour after I take my Celebrex for the rest of the day and has very little impact on my life; or I have so many other problems it’s not something I notice. I do drop things quite frequently, but I think that has more to do with left side muscle weakness than my arthritis.

What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I have faced since my pelvic floor dysfunction was diagnosed has greatly affected my sex life as my physicians would prefer if I don’t participate in any type of penetrative activities. My spouse and I had a very active and healthy sexual relationship prior to this. It has been nearly 6 months since we’ve been able to engage in traditional sexual conduct. Coming up with ways to maintain that physical closeness so that both parties are comfortable, secure, and satisfied has been extremely challenging. 

The diagnosis on my bladder came totally out of left field. I was able to pee, then one day I couldn’t. I was expecting a simple diagnoses, like maybe I had a kidney stone stuck in my urethra. Something with an easy fix. Leaving the doctor’s office with catheters for use on an as needed basis rocked my world. I’ve had to learn how to use a catheter, which isn’t easy. It gets a little easier every time, but I haven’t quite managed to use one without making a mess. I’m now on an every 6 hour schedule. I’m hoping to be able to get the implant which will allow me to void my bladder organically because the InterStem will send electronic stimulation that will tell my brain it’s time to go; right now the condition has worsened to the point I can’t tell myself when my bladder needs to be emptied, hence the schedule.

What are your favorite tips and tricks for managing everyday tasks?
Managing hypertonic pelvic floor dysfunction is an ever changing condition. Some days my muscles are so weak, I need assistance getting out of bed and down our stairs and my pain level is through the roof. On those days I do only what’s necessary and possible. Other days, my pain level is low and I can manage to most tasks on my own. I have to avoid things like squatting and heavy lifting and being on my legs for long periods of time. Doing anything that will strain those muscles cause spasms that are painful. I have more good days than bad days on that score because I’ve started listening to my body and paying better attention to what It’s telling me. Occasionally the inguinal ligament will get jammed between my hip joint and socket and on those days I need the use of a walking aid until the pelvic floor relaxes enough to release it.

For the structural damage to my bladder, I have to set a timer to make sure I don’t miss a scheduled catheter time. The more the bladder fills and the longer it remains full causes further damage.

How do you manage to keep facing forward every day?
I have a great mental health care provider. I don’t like having to use a catheter in a public restroom and started suffering social anxiety and panic attacks. With the help of an anti depressant and some anti anxiety meds, I do pretty well mentally. I know eventually my pelvic floor muscles can be retrained to function properly. I still have plenty of room for improvement. I just have to maintain my therapy sessions and trigger point injection appointments. The doctors are looking for an answer on the structural bladder damage. They have indicated to me the level of and suddenness of the permanent structural damage to my bladder is typically seen with advance cases of patients with MS. So knowing there is an answer out there and I’m not being neglected by the medical care providers leaves me with a feeling of confidence I am in good hands.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
My hypertonic pelvic floor dysfunction was misdiagnosed as sciatic nerve disorder for over 18 months. I would tell my past self to make sure the specialist examining me wasn’t embarrassed by a question relating to sex. When I asked my orthopedist if penetration is normally painful with someone who has a pinched nerve and he stammered and blushed, I should have immediately requested a second opinion. I would also tell my past self that emptying your bladder once every 12 hours is not normal and mention it to my physician earlier before the damage became permanent.

Do you have a blog you would like to share?
My blog address is https://www.afterrdarkk.com. I’ve also written an article for #ThatsNotAVagina which you can read here.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

“Treating Us Right: Lesbian, Gay, Bisexual, Transgender Considerations” at the 2016 American College of Rheumatology Annual Meeting

The 2015 ACR Annual Meeting was the first year to have a session specifically addressing the special medical needs and concerns of the LGBTQ patient population. Here's my review of the 2016 session.

Read more at RheumatoidArthritis.net!

Everyday Health: Best Rheumatoid Arthritis Reads of the Year

While my Facing Forward series doesn't focus only on individuals living with rheumatoid arthritis, I'm honored and excited that the series was recently recognized by Everyday Health as one of the Best Rheumatoid Arthritis Reads of the Year! 

I want to thank each and every person who has submitted their story to this series. At this point I've featured more than 70 individuals living with at least 80 different types of diagnoses! (If you haven't yet been featured and are interested, please send an email to mariah@fromthispointforward.com)

Check out the article (which also recognizes some of my other favorite bloggers!) here: Everyday Health: Best Rheumatoid Arthritis Reads of the Year

Facing Forward: Valerie

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name:  Valerie

Location:  North Carolina

Diagnoses: Fibroymalgia, CFS/ME, Hashimoto's Thyroid Disease, Raynaud's Disease, MTHFR gene mutation, IBS, Osteoarthritis, Scoliosis and Lyme Disease

Age at Diagnosis: I was diagnosed with Fibro, CFS, Osteoarthritis, IBS and Raynuad's disease in my late thirties. My Hashimoto's, MTHFR genetic mutation and Scoliosis diagnosis came just a few years ago and I was diagnosed with Late Stage Lyme Disease at the age of 43 this past March. I have been sick for nineteen years.

How are you currently treating your condition?
Lyme disease is difficult to treat and there are many, many options. Right now, I am under the care of a Lyme doctor who is treating me with antibiotics, tinctures, and supplements. A typical day of treatments consists of over fifty pills and tinctures which I take at various times throughout the day. It is a lot to handle, but I am hopeful to see improvements soon!

I am also taking supplements to support my MTHFR issues. I see a rheumatologist for my arthritis problems as they have become much more severe within the past year. I try to eat a gluten-free diet to improve my IBS and Lyme symptoms.

Since I homeschool my children, I try to rest when I can and not set my expectation levels too high! I have learned to pace myself and take frequent breaks.

What are the biggest challenges you have faced since your diagnosis?
When I was diagnosed with Lyme disease this past March, I was relieved to finally have a real answer as to why I had suffered so much over the past nineteen years. That relief was short lived when I realized that Lyme is not recognized in North Carolina by the CDC or main stream medicine. I have had to fight every inch of the way to get the treatment that I need.

It is equally difficult to explain my illness to my friends and family. They often struggle to understand what I am going through and that I am not able to do the things I used to do!

Treatment for Lyme is difficult at best. The treatments that have been prescribed for me, have made me sicker than I was to begin with. The common saying that you have to feel worse before you feel better definitely applies to Lyme disease treatments. I hope in time to see a real improvement.

What are your favorite tips and tricks for managing everyday tasks?
I have a terrible habit of pushing myself to the limit.

Learning to pace myself and take frequent rest breaks has been a real learning curve for me. If I fail to do this, I can count on being down for days. Pacing, as boring as it sounds, is my best friend. 

My mantra has become Rest to live and live to rest.

How do you manage to keep facing forward every day?
Being real and wearing the reality of the sickness I am fighting on my sleeve so to speak helps me to feel that I am not so alone. By letting those who are closest to me see the struggles that I face, they are able to help me when I need it the most.

My family is my biggest support system, I am so thankful for them.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back, I would go back nineteen years ago and ask to be tested for Lyme disease. Because I did not realize that Lyme is in North Carolina, I did not ask to get tested when I first got bitten by a tick! By waiting nineteen years, this disease has progressed to far beyond what it should have. It has permanently damaged my heart and nervous system. I am forever changed because Lyme did not enter the picture as a possible diagnosis for so many years!

Do you have a blog you would like to share?
I blog over at Lilacandlyme.com about my journey with chronic illness and the insights and lessons I have learned along the way. If you are interested in learning more you can connect with me there. You can also connect with me on Facebook, Twitter, and Instagram.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Facing Forward: Oren

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name:  Oren

Location:  Sebastopol, CA

Diagnosis: Osteoarthritis, both knees, right thumb (so far).

Age at Diagnosis: 52

How are you currently treating your condition?
I had a right total knee replacement in February 2015, after an arthroscopic "clean out" surgery was unsuccessful and they found that I had an osteophyte that had torn up my meniscus (knee cartilage) and even had chunk of it speared like trash on one of those sticks they use to clean up parks.  

After the TKR, I worked my physical therapy very hard.  Because of my inability to exercise (and a job that required way too may hours and too much stress), my weight had ballooned, so I tried to walk frequently and watch my weight.  I had a three month off work recovery period and when I returned to work, I quit.  I saw that the job was a major impediment to my recovery and that it was a major factor in exacerbating my symptoms.

After my replacement knee was strong enough, I began to try to ride my bicycle again.  It had been quite a few years since I rode it seriously (that darned job and all).  I could only ride it on very flat trails and only for about three to six miles before I was physically exhausted and I needed to ice and elevate my replacement knee.  I knew I had to keep up with it, but it was hard.

September of 2015, I learned that a friend of a friend was riding his bike from San Francisco to Los Angeles.  I was intrigued and figured that having a goal like that would help focus my training and recovery.  It was something I could build up to in five or six years, or - more realistically - never.   Then I learned that it was to raise money to help fight arthritis.  I'd heard of charity bike rides for such causes as AIDS, lung cancer, leukemia, diabetes, etc.  I had even participated in some.  But I had never heard of an arthritis ride.  I took it as a sign from God (fate, or whatever) that I HAD to do the ride and right away. 

So, I signed up for the 2016 California Coast Classic (CCC) during the 2015 CCC.  I was committed. I was going to do the ride. I wasn't concerned about the potential of losing the $75 registration fee, I was concerned about the "loss of face" of not doing the ride, because I had told everyone I knew (and many I didn't) through Facebook.

I spent the next six months in dread and fear about not being able to do the ride.  I was in NO shape, whatsoever, for such an undertaking.  I would lie awake at night, unable to sleep, thinking "What in *#$*) have I done?!"  Meanwhile, I joined a local bike club and struggled to keep up with the slower riders on the easier rides.  Between riding 5-6 days a week and watching what I ate (having more free time meant that I could cook most of my family's meals and control what went into them), I steadily lost weight and gained strength and speed.  Six months in, and I was hanging with the faster riders.  A few months after that, and I was being chided by the other riders for being too fast and too strong.

In preparing for the CCC, I rode 7,180.5 miles and lost some 90 pounds.  That led to strengthening my replacement knee, but the arthritis in my left knee continued to progress.  It's been a balancing act between the progress of the disease and the relief I have from weighing a lot less, thus putting a lot less stress on my knee.  Because it doesn't involve full extension, I can - with care - ride for long distances without left knee pain.  However, I can only walk a few blocks without limping and pain.

The 2016 CCC, itself, was a challenge, but I was more than physically ready for it.  It was a great joy to see everyone working so hard to help fight arthritis.  I signed up for the 2017 CCC, too. 

I know that the CCC raises lots of money that does lots of good for lots of arthritis sufferers.  I know that it did lots of good for this arthritis sufferer. 

 

What are the biggest challenges you have faced since your diagnosis?
See above.

What are your favorite tips and tricks for managing everyday tasks?
 I ride my bike to feel better and to lose weight and get in shape.

How do you manage to keep facing forward every day?
Like there's a choice.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
It's time to change your life around.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

New FDA Pregnancy Labeling Standards – Not As Boring As It Sounds!!

The FDA has new rules concerning how medications are labeled for use during pregnancy and breastfeeding!

Read more at RheumatoidArthritis.net!

Maintaining a Healthy Sex Life With RA

I'm always excited when I get offered an opportunity to write about RA and intimacy. I may not always have anything particularly new or exciting to say, but every chance I have to bring more attention to the subject is another opportunity to reach someone who feels like they are struggling all alone. And the more confident patients feel requesting help with sexual issues, the more likely healthcare professionals are to provide it.

So check out my newest guest post for NewLifeOutlookRA!

“Sex and Intimacy in Chronic Disease” at the 2016 American College of Rheumatology Annual Meeting

While RA patients may want to ask their healthcare providers for advice on issues like pain or fatigue, the subject of sex can often be difficult or uncomfortable for patients to bring up.

Read more at RheumatoidArthritis.net.

Facing Forward: Lene

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Lene

Location: Toronto, Canada

Diagnoses: Juvenile arthritis, fibromyalgia, migraines

Age at Diagnosis: I was 4 when my juvenile arthritis started, but wasn't diagnosed until I was 9 years old. I've had migraines since my teens, and developed fibro in 2004.

How are you currently treating your condition?
I'm primarily using a biologic to treat my JA and miracle of miracles, it is working! There were no treatments for the disease for most of my life, so it's astonishing to finally experience what it's like when something works. Because it's taking care of my autoimmune arthritis, my fibromyalgia is quieter than it was when things were active. It is still there, though. I mostly treat that with a variety of painkillers and muscle relaxants. I also try to meditate, but I'm bad at remembering to incorporate it in my every day. I've used a variety of alternative treatments throughout my life, but as things are pretty good right now (knock wood), there is less need for that. I see a doctor of naturopathic medicine several times a year, though. 

 

What are the biggest challenges you have faced since your diagnosis?
Over the last 50 years, there have been quite a lot, but if I think in terms of the absolute biggest, there are two. One is having to use a power wheelchair since I was 16. Because there were no treatments when I was growing up, the disease wrecked every part of my body. Starting to use a wheelchair was actually liberating - I'd spent the previous two year lying in a hospital bed waiting for custom-made hip replacements. When I was 16, I had both hips replaced and that enabled me to sit up again, go home, and create a life. Still, having a disability is one hell of a challenge in a world that is made for the able-bodied.

The second of my big challenges was the big flare I had in 2004. It was the second time my autoimmune arthritis tried to kill me and that time, it came pretty close. The flare burned so high and so bright that the only way I could see out of it was to commit suicide. I gave myself a deadline, but thankfully the funding for Biologics came through first and the medication worked.

Come to think of it, there's been an additional challenge. Earlier this year I got the flue, which thanks to my asthma (forgot to mention the asthma) turned into pneumonia, which turned into something even nastier. I spent a long time in the ICU on a ventilator in an induced coma, and had to have an emergency tracheostomy. That itself was a challenge, but recovering has been quite difficult, as well, especially the emotional aftereffects.  

What are your favorite tips and tricks for managing everyday tasks?
Reachers are an essential part of my life, but not the ones made in North America. The fact that you have to squeeze the handle in order to keep the grabbing tongs closed is completely ridiculous when you consider that someone who needs a reacher likely has dexterity or strength issues. I've found this fantastic reacher that is made in Sweden, but can be found for sale in the US. You squeeze the handle to open the tongs and they stay closed when you let go! It's significantly more expensive than the North America-made reachers, but very durable and well worth the money.

I also use forks for a lot of things besides eating. They are excellent for opening Ziploc bags (stick the tines in between the interlocking plastic to create a gap), as well as pop cans. And I take a nap every afternoon. Without it, my pain levels would be skyhigh. To avoid people making ignorant comments about how nice it must be - because we all know that a nap is not an indulgence when you have a chronic illness - I call it my mandatory rest period.

How do you manage to keep facing forward every day?
The big flare I had 12 years ago taught me a lot. Getting my life back was a miracle, a second chance that I take seriously. I decided to stop pretending to be doing better than I actually was and find a way to be the person I'd always wanted to be. I work hard to look at what I can do, rather than what I can't, and to find the positive in every day. Living authentically and focusing on joy is hard work, but I am so much happier now than I've ever been, even though I in many ways am more limited than I used to be. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Cry as much has you need to cope. And know that you can cope with this and have a good life. 

Do you have a blog you would like to share?
The Seated View

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Rheumatoid Arthritis in America 2016 National Survey

Rheumatoid Arthritis In America 2016 is a national survey of more than 3,100 individuals who identified as living with rheumatoid arthritis (RA). The results this year's study show that initial symptoms are often invisible to others and that receiving an accurate diagnosis can often prove difficult for patients. 

Ok. I know these results seem almost hilariously obvious to those of us actually living with RA. (Anyone else a child of the 90s and have the undeniable urge to shout "no duh!"??) However, this study is important, because having data to back up the invisible realities we face every day is key to helping us be better understood - both by our healthcare professionals and by our friends and families. 

If you'd like to learn more about the study, you can read the rest of the press release (including a quote from yours truly!) on EurekAlert! The Global Source for Science News.  I'll also include the infographic with an overview of the study findings below! Maybe consider sharing it with your friends and family members who are having trouble understanding what you are going through? And/or use it as a reminder that you are not alone!