Ankylosing Spondylitis and Pregnancy

When I found out I was pregnant I was scared and happy at the same time, I didn’t know if my conditions would get worst will my pain increase is it even safe to continue with the pregnancy but then I thought about my boys and what a blessing they have been in my life and we made the decision to continue with the pregnancy. I’m now 20 weeks and I’m having my lil baby girl I’ve always wanted so yes we made the right decision. So far it hasn’t been as bad as I thought it would be I had regular morning sickness the first month cramping for a few weeks all normal things to expect when your pregnant the morning sickness has now passed And I’m feeling ok. I don’t think my pain can increase anymore than what it is because of all the damage that I already have mayb my baby girl will heal me 🙏🏾 It hasn’t been easy but I will get through it because I’m a fighter plus I have to this is my girlllllllllllllllllllllll 👧🏽👧🏽👧🏽🤰🏽🤰🏽

I’ve been off of all meds including medical marijuana for a few months now which is scary because I know AS can not go untreated for too long but I’m going to try acupuncture because it’s safe in pregnancy. I do light yoga at home, warm baths and my hubby gives me massages which is helping a lil, I take pretty good care of myself and I have a great support system so I think I will be ok!

Here’s what you should know if you are pregnant, planning to become pregnant and breastfeed.

For a woman considering pregnancy, some questions are universal – will I have severe morning sickness? Should I have natural childbirth or get an epidural? Will I use cloth diapers or disposables?  But if you have ankylosing spondylitis (AS) you probably have some unique ones – will my disease or medication affect my baby’s development? Will my symptoms worsen during pregnancy? Will arthritis affect my delivery? Will I be physically able to care for my new baby?

In most cases, the answer to these questions can be quite reassuring.

Here’s what you should know about common concerns when you’re thinking about having a baby, during pregnancy and after the delivery.

There is no evidence that having ankylosing spondylitis will affect your ability to conceive. But pre-planning is important, so practice effective birth control until you decide the time is right for you to have a child.

Ideally, you should discuss family planning issues with your rheumatologist early on, not just when you’ve decided you would like to start trying to have a baby.

Effect of ankylosing spondylitis and medications on baby: Planning will always involve a discussion of which medications you can and can’t safely continue during pregnancy. Methotrexate is one drug used in AS treatment that should always be stopped before attempting pregnancy, due to its effects on fertility and possible risk of birth defects.

The risks of most drugs prescribed for AS end when the drug is out of your bloodstream. Neither the drugs you took in the past nor AS itself should affect the development of your baby.

Passing on AS: There is a genetic component to autoimmune diseases, such as AS.  While there’s a possibility that your child may develop AS or another autoimmune disease, it’s really important to remember that many women with autoimmune diseases have healthy babies who don’t develop arthritis or any other type of autoimmune disease.

Disease activity during pregnancy: Similarly, having a baby will not likely have a significant impact on the course of your AS. Research dating back to the late 1990s suggested that women with AS have a roughly equal chance of having their disease activity worsen, improve or stay the same during pregnancy.  A 2018 study published in Rheumatology found that for women with AS, disease activity tended to stay low and stable throughout most of pregnancy with disease activity peaking in the second trimester.

Caring for new baby: A study published in the Journal of Fetal and Maternal Medicine in 2016 found that for about one-third of women AS flare in the months after delivery, which could mean you’ll need some extra help caring for your baby if that happens.

AS’s effect on delivery: 

If arthritis affects your back or hips, you may notice more pain in those joints as your baby grows and places more stress on those joints. Ask if your obstetrician has experience working with women with disabilities. If possible, find out the same about the anesthesiologist who will be working with you in the delivery room. In some cases, involvement of the hips and spine could make a vaginal delivery more difficult and inflammation of the spine could make it difficult to administer an epidural – the injection of an analgesic directly into space around the spinal cord to numb the lower half the body during delivery.  You should discuss these possibilities with your doctor.

If disease becomes more active during pregnancy or you develop any complications, you should speak with your OB/GYN about a referral to high-risk OB/GYN. However, a 2016 study in the Journal of Maternal-Fetal & Neonatal Medicine found no increase in adverse pregnancy outcomes in women with AS.

Planning for your newborn’s care: During pregnancy it’s important to plan for the help you’ll need after you deliver. Even if your disease is well controlled you may have more fatigue than other new mothers, so you’ll likely need extra help once the baby comes.

Ability to breast feed: There’s no evidence that AS lowers milk production. However, some women experience pain when trying to hold their babies to breastfeed, especially if their AS is not well-controlled. While you can’t pass AS to your child by breastfeeding, you can pass along some medications. Many medications are safe to use in lactation, and medication passage through breastmilk is relatively low in many cases.

For most women with AS a healthy delivery and baby is possible.

Disease activity: If you notice worsening of symptoms, contact your rheumatologist, because a flare is more likely in the months after delivery. And even if your disease is stable, childbirth and caring for a newborn is exhausting, so fatigue is likely.

Medication and breast feeding: If controlling your disease after delivery requires a change in medication, let your doctor know if you are breastfeeding. Many medications, but not all, are safe for breastfeeding.

Caring for baby: Taking care of yourself now is especially important – take your medications, eat healthfully, nap when the baby naps and get help from your partner, trusted family and friends and even paid help, if needed or possible. Parenthood is a challenging, lifelong job, but may provide unique joys. Taking care of yourself now can help ensure your ability to care for your child in the years ahead.

How to still stay stylish while living with a chronic illness. Fashion with chronic illness!

I fully understand how difficult it is to find clothes that are not only stylish but also comfortable. I also know how difficult it can be to even get up, wash and dress…let alone thinking about what outfit to put together. I have researched clothing that can be dressed up or down depending on how you are feeling that day. Even if it is a low energy day you can still pull them on, without having to think about it and know that you look good and will feel comfortable. 

It might seem like a superficial thing but expressing your personality through your clothes is a huge part of what makes you unique and I seriously struggled with feeling unattractive some days. Not being able to dress myself how I liked just added to the feeling of a loss of control that I had over my life. One major issue with chronic illness is that the outside often doesn’t reflect the inside. Fashion becomes more functional when you are disabled or chronically ill. My hope is that this post will show you that you can still have some control over how you express yourself and still find clothes that are fashionable yet comfortable and easy to put on.

Most of the women I know with chronic illness live in pajamas or leggings as nothing else is comfortable. I want to help you see that you can be both fashionable and comfortable. It won’t take your chronic illness away but I know from my own experience that when I felt like I looked good and desirable, it lifted my mood and I felt better mentally even if I couldn’t feel better physically.

Functional fashion with chronic illness

Fashion for me now also needs to be functional. I suffer a lot with temperature irregularities so I need clothes that will be warm. I like soft fabrics which are comfortable and move easily and high waistbands that don’t dig in. However I find this type of clothing is not found easily on the highstreet and will often cost more to buy from specialist shops. People with chronic illness are often unable to work and have huge doctors bills so having to source clothing from more expensive specialist shops can be an issue.  

Actually going shopping used to be a nightmare so I would purchase most of my clothes online and still do. The harsh lighting and excessive noise from loud music playing in the store would have me bedbound for weeks after a shopping trip. I also found the fitting rooms too small to easily try on clothes as I would often need a second person to help me dress and most didn’t have seats to rest in between trying on clothes. Some stores now have disability changing rooms but when I once asked to use one I was told I couldn’t because I didn’t have a wheelchair. I think there needs to be more education and awareness that not all disabilities are visible.

Having a disability doesn’t mean that you are depressed!

I honestly don’t think that women with chronic illness or disability are considered enough or represented in the fashion industry. Everyone wants to look nice even when sick. I think that when people see someone being disabled and dressing up and having fun it helps challenge the stereotype that all disabled people are depressed or that their life sucks. Being chronically ill or disabled is of course a part of you, but it’s not the only part of you and that also needs to be recognized. Inside is the girl who still loves fashion and wants to look nice and represent her personality even if she has no control over her body. That desire doesn’t go away when you get sick.  

So here are ten pieces available online to help you still show your love for fashion with chronic illness.

Sunday Ten. 

1. Jersey tie waist midi dress €23.99

Jersey Midi dress from My Chronic Style. Fashion with chronic illness. Read more on www.allaboutrosalilla.comJersey Midi Dress €23.99 My Chronic Style

This soft jersey dress comes from the online company My Chronic Style. My Chronic Style is the worlds first clothing range completely focused on comfort and fit for those suffering with invisible illnesses.  
All of their clothes have been chosen with soft fabrics and waist bands that won’t dig in even on days where you may feel bloated or in pain. This beautiful dress is comfortable and can be dressed up on a good day or for an occasion but is also comfortable for couch bound days. It is also affordable and comes in colours grey, khaki and navy. You can shop this dress here.

2. ASOS DESIGN co-ord jumper and skirt in ribbed knit €34.56, €38.71

co-ordinating ribbed knit skirt and jumper.ASOS DESIGN

This soft knit co-ordinating knit skirt with an elasticated waist and beautiful v-neck jumper with volume sleeve is fashionable, warm and comfortable.

3. ASOS DESIGN Plain Cape €24.89

Soft Grey Cape. Fashion with Chronic illness. Read more www.allaboutrosalilla.comSoft Grey Cape €24.89

Sometimes when you are not feeling well you just want to wrap yourself up warm and cosy. This beautiful soft grey cape is perfect for those days you just want to wrap yourself up but is also stylish enough to confidently express your individuality.

4. Animal Print Jersey Peg Trousers €30.00

Comfortable jersey peg trousers. Fashion with chronic illness. Read more on www.allaboutrosalilla.comM&S €30.00

These jersey peg style trousers from M&S have added stretch and an elasticated waist, that work together to keep you feeling comfortable while looking chic in these animal print trousers. The tapered fit creates a stylish silhouette with these peg trousers, while the animal print adds a stylish touch. 

5. M&S Pocket Waisted Midi Dress €54.00

Pocket waisted Midi dressM&S €54.00

This beautiful Midi dress from M&S is made from a linen blend material with 100% cotton lining that makes it both soft and lightweight. My favourite thing about this dress is its oversized pockets which give it a charming retro vibe. It is light for those days when any material feels too heavy and can be layered with either a jumper or cardigan for extra comfort.

6. Turtleneck Sweater €23.99

Elegant Loose Turtleneck SweaterMy Chronic Style €23.99

This one is all about comfort. It is the perfect item for layering and can be added on top of any outfit for extra warmth and comfort. The sweater is loose enough to be comfortable but warm and soft enough to snuggle into. This elegent loose turtleneck sweateris again from My Chronic Style and comes in four colours, grey, black, green and this gorgeous blue.

7. Hooded Sweatshirt Dress €14.00

Hooded dress. Fashion with chronic illness. Read more on www.allaboutrosalilla.comShein €14.00

This hooded sweatshirt dress from Shein is such a simple and stylish way to dress comfortably without having to put much thought or effort in. It is a very affordable item to add to your chronic illness wardrobe.

8. QED London kimono cardigan with floral embroidery €33.18

Kimono cardigan. Fashion with Chronic illness. Read more on www.allaboutrosalilla.comKimono Cardigan €33.18

This beautiful relaxed fit and lightweight kimono cardigan is the perfect way to easily dress up any outfit.

9. Black Hanky Hem Jersey Midi Dress €22.99

Black Hanky Hem Jersey Midi DressNew Look €22.99

This cute little dress from New Look is loose, light and easy to slip on for days that you want to look nice but when energy is low. I just love the dipped hanky hem on it which adds a bit of edge without having to put in too much effort.

10. ASOS DESIGN plisse midi dress with elasticated waist in spot print €52.54

ASOS DESIGN plisse midi dress with elasticated waist in spot printASOS €52.24

This beautiful dress is easy to put on with a pullover style but is super fashionable and has a gorgeous vibrant colour with spot pattern detail. This dress is an instant mood lifter and will suit many occasions from days when you are resting to those special occasions where you also need to remain comfortable.

So as I said previously today’s Sunday Ten is a matter close to my heart. I literally spent the majority of my very ill days in pajamas because I didn’t have the energy to research clothing on top of everything else. I know that I wish that I had a blog post like this to help source items that were both functional and fashionable so I hope that this blog posts help others in this way.

stay stylish ladies 🤗🤗🤗 This set is from https://www.fashionnova.com/

Support Groups

Many people find peer support a helpful tool that can aid in their recovery. Support groups are a great resource for people to maintain control over their lives, to give and take the wisdom and experience that comes from living with a devastating illness. An effective support group helps recovery through mutual support and provides updated information about causes and treatment.

I started my online support group in February of 2019 after I came out of a deep depression from being diagnosed. Having a support group and being able to help others have been such a proud accomplishment in my life battling AS and fibromyalgia, most days are hard but having support makes it a lil more easier to cope with because you have people who truly understand what your going through and who are there to lend support and share experiences. My online support group has been so successful that I was granted the opportunity to lead my own in person support group in my hometown of North Myrtle Beach SC. If you or someone you know is suffering with a chronic illness and is looking to join a fun loving support group please go to https://www.spondylitis.org/Community/Support-Groups/North-Myrtle-Beach for a support group near you.

Adenomyosis

I was recently diagnosed with Adenomyosis like Ankylosing spondylitis I have never heard of this disease before diagnosed, seems like once you get one autoimmune disease so many other things start happening in your body that you can’t control and no one has the answers as to why so i’am left with yet another disease that causes discomfort and pain 😔

Adenomyosis (ad-uh-no-my-O-sis) occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. The displaced tissue continues to act normally — thickening, breaking down and bleeding — during each menstrual cycle. An enlarged uterus and painful, heavy periods can result.

The cause of adenomyosis remains unknown, but the disease usually resolves after menopause. For women who have severe discomfort from adenomyosis, hormonal treatments can help. Removal of the uterus (hysterectomy) cures adenomyosis.

Symptoms

Sometimes, adenomyosis causes no signs or symptoms or only mild discomfort. However, adenomyosis can cause:

  • Heavy or prolonged menstrual bleeding
  • Severe cramping or sharp, knifelike pelvic pain during menstruation (dysmenorrhea)
  • Chronic pelvic pain

Your uterus might get bigger. Although you might not know if your uterus is enlarged, you may notice that your lower abdomen feels tender or causes pelvic pressure.

When to see a doctor

If you have prolonged, heavy bleeding or severe cramping during your periods that interferes with your regular activities, make an appointment to see your doctor.

Causes

The cause of adenomyosis isn’t known. There have been many theories, including:

  • Invasive tissue growth. Some experts believe that adenomyosis results from the direct invasion of endometrial cells from the lining of the uterus into the muscle that forms the uterine walls. Uterine incisions made during an operation such as a cesarean section (C-section) might promote the direct invasion of the endometrial cells into the wall of the uterus.
  • Developmental origins. Other experts suspect that adenomyosis originates within the uterine muscle from endometrial tissue deposited there when the uterus first formed in the fetus.
  • Uterine inflammation related to childbirth. Another theory suggests a link between adenomyosis and childbirth. Inflammation of the uterine lining during the postpartum period might cause a break in the normal boundary of cells that line the uterus. Surgical procedures on the uterus can have a similar effect.
  • Stem cell origins. A recent theory proposes that bone marrow stem cells might invade the uterine muscle, causing adenomyosis.

Regardless of how adenomyosis develops, its growth depends on the circulating estrogen in women’s bodies.

Risk factors

Risk factors for adenomyosis include:

  • Prior uterine surgery, such as a C-section or fibroid removal
  • Childbirth
  • Middle age

Most cases of adenomyosis — which depends on estrogen — are found in women in their 40s and 50s. Adenomyosis in these women could relate to longer exposure to estrogen compared with that of younger women. However, current research suggests that the condition might be common in younger women.

Complications

If you often have prolonged, heavy bleeding during your periods, you can develop chronic anemia, which causes fatigue and other health problems.

Although not harmful, the pain and excessive bleeding associated with adenomyosis can disrupt your lifestyle. You might avoid activities you’ve enjoyed in the past because you’re in pain or you worry you might start bleeding.

Trapped in my own body!

Some days I try not to think about what my life has become living with a chronic illness that no one can see that most people haven’t even heard of and other days that’s all I think about it’s a never ending battle fighting my own body I feel trapped in a body that I can’t control everyday is a challenge from feeling tired not sleepy tired but body tired my body gets so tired literally the pain drains my body n soul the feeling of not being able to do the things that were once so easy and simple have now become the hardest things you have to do just to get through the day can become depressing you start to feel useless lonely misunderstood because no one understands your pain no one understands or believes that you can be in pain all day everyday. The pain never goes away the burning, stabbing, numbness, tingling, muscle weakness, joint pain, fatigue is there ALL DAY and all i can do is keep fighting through it to enjoy life still, that’s no way to live if you ask me. I’m grateful for my new journey I’m helping people in ways i never thought I could just by sharing my story and opening up a communication network for those suffering also u see I can’t do the things I use to do but I can do new things that can change someone’s life, when I was first diagnosed I went into a really deep depression I napped all year hence why I choose that name for my blog n social media networks I didn’t adjust right away I was moody always upset for no reason and just wanted to sleep the pain away I was just mad at the world for taking away what I loved it took me some time but as I educated myself I realized i’am Stronger then this and I will defeat this and fight in 2019 I told myself nay it’s time to fight and take your fab life back don’t let this stop you and I remind myself everyday when I have those moments where I want a give up but I’m fighting not only for me but for everyone else who is facing chronic illness although my life has changed drastically i found a new purpose and the reward of helping others cope is priceless if my story can help one person I did my job! If I can inspire one person I did my job if I can motivate one person I did my job if I can be a friend a listener I did my job see this journey is not only my journey it’s a whole MOVEMENT! This is my awesome support group 💙💙

What is Banana OG & Strawberry Cough?

I’ve been vaping medical marijuana for about a year and a half now and I’ve tried many different medications that have not been affective in my treatment plan and had very harmful side effects so I turned to medical marijuana it’s the only thing that helps some it doesn’t completely take my pain away but it def calms it enough to function a little I’ve tried many diff strains and brands of medical marijuana I continue searching for one really good one that will hit my pain, I’m trying these 2 bad boys out now keep u posted on the effects! #vapelife #medicalmarijuanapatient 💨🤪

Banana OG is an indica-dominant cross of OG Kush and Banana. With a smell and flavor of overripe bananas from a terpene profile dominant in limonene, caryophyllene, and pinene, this hybrid definitely earns its name. Banana OG has THC levels ranging between 19-24% and has a reputation as a creeper, leaving those who over-imbibe in a near comatose state before intense hunger and sleepiness sets in. Patients treating muscular pain, appetite loss, and insomnia may benefit from Banana OG.

Known for its sweet smell of fresh strawberries and an expanding sensation that can make even the most seasoned consumer cough, Strawberry Cough is a potent sativablend with mysterious genetic origins. The skunky, berry flavors will capture your senses while the cerebral, uplifting effects provide an aura of euphoria that is sure to leave a smileon your face. Strawberry Cough is a great solution for managing social anxieties and to balance yourself in times of elevated stress.

Femoroacetabular Impingement

I recently got an MRI of my hip and this is what they found feeling like I’m falling apart inside and I can’t do anything to stop it 😔😔😔😔😔😔😔😔

Femoroacetabular impingement (FAI) is a condition in which extra bone grows along one or both of the bones that form the hip joint — giving the bones an irregular shape. Because they do not fit together perfectly, the bones rub against each other during movement. Over time this friction can damage the joint, causing pain and limiting activity.

Anatomy

The hip is a ball-and-socket joint. The socket is formed by the acetabulum, which is part of the large pelvis bone. The ball is the femoral head, which is the upper end of the femur (thighbone).

A slippery tissue called articular cartilage covers the surface of the ball and the socket. It creates a smooth, low friction surface that helps the bones glide easily across each other during movement.

The acetabulum is ringed by strong fibrocartilage called the labrum. The labrum forms a gasket around the socket, creating a tight seal and helping to provide stability to the joint.

In a healthy hip, the femoral head fits perfectly into the acetabulum.

Description

In FAI, bone overgrowth — called bone spurs — develop around the femoral head and/or along the acetabulum. This extra bone causes abnormal contact between the hip bones, and prevents them from moving smoothly during activity. Over time, this can result in tears of the labrum and breakdown of articular cartilage (osteoarthritis).

Types of FAI

There are three types of FAI: pincer, cam, and combined impingement.

• Pincer. This type of impingement occurs because extra bone extends out over the normal rim of the acetabulum. The labrum can be crushed under the prominent rim of the acetabulum.

• Cam. In cam impingement the femoral head is not round and cannot rotate smoothly inside the acetabulum. A bump forms on the edge of the femoral head that grinds the cartilage inside the acetabulum.

• Combined. Combined impingement just means that both the pincer and cam types are present.

(Left) Pincer impingement. (Center) Cam impingement. (Right) Combined impingement.

Cause

FAI occurs because the hip bones do not form normally during the childhood growing years. It is the deformity of a cam bone spur, pincer bone spur, or both, that leads to joint damage and pain. When the hip bones are shaped abnormally, there is little that can be done to prevent FAI.

It is not known how many people have FAI. Some people may live long, active lives with FAI and never have problems. When symptoms develop, however, it usually indicates that there is damage to the cartilage or labrum and the disease is likely to progress.

Because athletic people may work the hip joint more vigorously, they may begin to experience pain earlier than those who are less active. However, exercise does not cause FAI.

Symptoms

The most common symptoms of FAI include:

• Pain

• Stiffness

• Limping

Pain often occurs in the groin area, although it may occur toward the outside of the hip. Turning, twisting, and squatting may cause a sharp, stabbing pain. Sometimes, the pain is just a dull ache.

Home Remedies

When symptoms first occur, it is helpful to try and identify an activity or something you may have done that could have caused the pain. Sometimes, you can just back off on your activities, let your hip rest, and see if the pain will settle down. Over-the-counter anti-inflammatory medicines, such as ibuprofen and naproxen, may help.

If your symptoms persist, you will need to see a doctor to determine the exact cause of your pain and provide treatment options. The longer painful symptoms go untreated, the more damage FAI can cause in the hip.

Doctor Examination

During your first appointment, your doctor will discuss your general health and your hip symptoms. He or she will also examine your hip.

Impingement Test

As part of the physical examination, your doctor will likely conduct the impingement test. For this test, your doctor will bring your knee up towards your chest and then rotate it inward towards your opposite shoulder. If this recreates your hip pain, the test result is positive for impingement.

Impingement test.

Reproduced from Armstrong AD, Hubbard MC, eds: Essentials of Musculoskeletal Care, ed 5. Rosemont, IL, American Academy of Orthopaedic Surgeons, 2015.

Imaging Tests

Your doctor may order imaging tests to help determine whether you have FAI.

• X-rays. These provide good images of bone, and will show whether your hip has abnormally shaped bones of FAI. X-rays can also show signs of arthritis.

• Computed tomography (CT) scans. More detailed than a plain x-ray, CT scans help your doctor see the exact abnormal shape of your hip.

• Magnetic resonance imaging (MRI) scans. These studies can create better images of soft tissue. They will help your doctor find damage to the labrum and articular cartilage. Injecting dye into the joint during the MRI may make the damage show up more clearly.

• Local anesthetic. Your doctor may also inject a numbing medicine into the hip joint as a diagnostic test. If the numbing medicine provides temporary pain relief, it confirms that FAI is the problem.

Treatment

Nonsurgical Treatment

Activity changes. Your doctor may first recommend simply changing your daily routine and avoiding activities that cause symptoms.

Non-steroidal anti-inflammatory medications. Drugs like ibuprofen can be provided in a prescription-strength form to help reduce pain and inflammation.

Physical therapy. Specific exercises can improve the range of motion in your hip and strengthen the muscles that support the joint. This can relieve some stress on the injured labrum or cartilage.

Surgical Treatment

If tests show joint damage caused by FAI and your pain is not relieved by nonsurgical treatment, your doctor may recommend surgery.

(Left) A cam bump on the femoral head. (Right) After the bump has been shaved down during surgery.

Reproduced from Diaz-Ledezma C, Higuera CA, Parvizi J: Mini-open approach for the treatment of FAI in Sierra RJ, ed: Femoracetabular Impingement. Rosemont, IL, American Academy of Orthopaedic Surgeons, 2013, pp 81-91.

Arthroscopy

Many FAI problems can be treated with arthroscopic surgery. Arthroscopic procedures are done with small incisions and thin instruments. The surgeon uses a small camera, called an arthroscope, to view inside the hip.

During arthroscopy, your doctor can repair or clean out any damage to the labrum and articular cartilage. He or she can correct the FAI by trimming the bony rim of the acetabulum and also shaving down the bump on the femoral head.

Some severe cases may require an open operation with a larger incision to accomplish this.

(Left) During arthroscopy, your surgeon inserts an arthroscope through a small incision about the size of a buttonhole. (Right) Other instruments are inserted through separate incisions to treat the problem.